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Elizabeth Parcells Colon Cancer Messages

This is the symbol for colorectal cancer awareness.  It was recently adopted by all colorectal cancer societies along with the phrase

"Preventable, Treatable, Beatable."

In July, 2003, I heard the devastating diagnosis that I have advanced colon cancer.   Since then I have lived with the terrible consequences of this disease; the difficult surgery, the chemotherapy, the symptoms and complications.   There are other challenges too; keeping the faith, hoping where there is no hope, fighting with courage and humor.  I have met many brave people who face these same challenges which can bring out the worst or the best in a person.

And the kicker is, this cancer is indeed preventable.  With timely screening, a colonoscopy by age 50 at the very latest, many cases can be treated effectively and even cured in the early stages.  It is my most fervent wish that everyone who is at all at risk (family history, age, colitis, dumb luck) make that vital appointment for a colonoscopy and avoid becoming dangerously ill.  Remember, denial kills.  I pray for you every night.    Elizabeth Parcells

March 30, 2005 Radio Interview

American Cancer Society Colon Cancer Alliance Medicine Net Information ACOR Assoc. of Cancer Online Resources Colorectal Cancer Coalition

Date: Fri, 19 Nov 2004 18:05:46 EST
From: Elizabeth Parcells 
Subject: Re: Avastin and It's Side Effects

Hello all,

I'm new to the board.  So here goes.

I too have noticed additional hoarseness since beginning Avastin last March.  I find it troublesome only because I am a singer, but the usual remedies seem to help, hot tea with lemon and honey, some careful vocalizing and deep breathing to move the phlegm off the cords, and stuff like that.  I did not think the Avastin was causing the problem necessarily, but after reading the posts, I guess it is.  I asked my doctor at one point and he suggested a special mouthwash for sores and hoarseness, but I like my hot tea better.

I am on Avastin, 5FU and Leucovorin for stage IV colon cancer.  I was diagnosed in July 2003, had surgery that August and started chemo on FOLFAUX in October 2003 and have been on it ever since with only two interruptions when I got too "toxic." I have had to deal with nausia, vomiting, dehydration, fever spikes, infections, a DVT (deep vein thrombosis) resulting in pulmonary embolisms and the *&%$# blood thinners to control them.  I have been in the hospital twice for the side effect related issues.  Chemo is no fun!

Otherwise I am in good health and feel lucky not to have pain or other debilitating conditions.  I do have mets to the liver and elsewhere, but they don't hurt yet.  So far, I am doing pretty well, considering, and am grateful. 

God bless those of you who have these serious challenges.  I pray God will give each of us what we need to survive each day. 

Regards, Elizabeth

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Date: Tue, 23 Nov 2004 19:23:48 EST
From: Elizabeth Parcells 
Subject: Re: FDA approves FOLFOX for Stage III disease


11/23/2004 12:04:02 PM EST, theyerlp@ writes:

My husband, Dennis, will be starting his treatment (FOLFOX6) beginning Dec.1.  We've received some encouraging news from another list member as far as side-effects - but I'm asking for anyone on the list who is receiving FOLFOX to reply back with any advice about the chemo and\or side effects.  Like so many of the "newbies" - we've never been down this road before - can I sit with him when he gets the treatment? And speaking of the "road" - I'm not sure if I should take pillows or blankets for the drive home? (approx. 2 hours) My husband's attitude is so good - someday I feel guilty because I'm not always "up".  thank you all for this LIST! I have learned so much in a very short 5 weeks! Thank you - Pat - wife of Dennis, dx 10/16/04, Stage III, 17 of 23 nodes positive.

Dear Pat, I am Elizabeth, dx July, 2003, stage IV, sigmoid tumor with mets to liver, pelvis and lungs, but clinically doing exceptionally well!

I started my FOLFOX treatment in October 2003 following a six week recovery period from surgery.  At first I had a hard time with nausea and vomiting.  It seems in retrospect that I did not alter my activity level to suit the chemo and thus caused some of the problems by: over-doing it, not drinking enough water and not adjusting my eating correctly.  The Oxaliplatin also causes some sensitivity to cold which was annoying but didn't set me back much. 

As I went along I learned to rest thoroughly for at least three days after chemo.  The first day, I came home from treatment and just went right up the stairs without thinking and found I had to throw up right then! So don't go jogging after treatment! Keep the Immodium and Zofran handy at all times and take more Immodium than prescribed on the package when there is severe
diarrhea .  Take the Zofram at the first sign of nausea if not sooner.  Drink plenty of water, eat Jell-O or anything else you can do to keep your fluid coming in.  Stay away from raw or hard-to-digest foods or foods that cause gas.  Eat small portions and eat slowly!

If you don't believe me or the folks advising you, you'll have to learn the hard way! LOL like I did.  You just don't realize right away the limitations within which you have to live as a chemo patient. 

These days, I am feeling quite okay, much better than a year ago.  So yes, it can improve.  Your husband is stage III and may only get treatment for a prescribed period of time.  As a stage IV, I have to live with the chemo indefinitely so I have found ways to tolerate it better. 

Yes you can accompany your husband to the chemo treatment room and sit with him there.  Take reading material or your favorite knitting project in case he tends to sleep thru treatment.  I find the Anzemet they give before treatment makes me sleepy.  If he has any problems during treatment, call a nurse.  They are there to help.  At first the treatments should go fine.  Later when the chemo has built up in his system he may notice side effects worsening.  Be sure to let the doctor know in detail how he is reacting and feeling.  Sometimes the doses can be adjusted.  He will probably get the steroid Decadron before treatment to promote healing and help him deal with the side effects better.  I found it helpful at first, but later when I felt better, I decided I could do without the steroids and have dropped that med.  Do what he feels is best for him. 

As far as the road, yes take pillows and blankets since he may feel like resting and will want to stay warm in the car.  If he gets car sick, keep a container for him if he has an "oops." It might be advisable to stop if he really feels nauseous while traveling.  Wait and see.  This chemo side effect thing can be unpredictable so just be ready. 

There is lots more I could tell you , but I don't want to "hog" the board.  Feel free to email me if you have specific questions.  Hope all goes well with you both, and best wishes!

Elizabeth

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Date: Sat, 27 Nov 2004 10:38:37 EST
From: Elizabeth Parcells 
Subject: Re: clinical trial eligibility


I would like to comment on the messages below on the merits and challenges of clinical trials from my own point of view as a patient with advanced cancer:

I understand the disappointment when treatment options dwindle, since options always represent hope.  But even when treatments cannot deliver us, there is always room to hope for the right things.  Thanks to Kate and the other list managers for helping so many of us with their understanding and expertise. 

When my colon cancer was diagnosed in July 2003 at stage IV, I was otherwise in very good health and 51 years old.  At the very first visit with my oncologist we discussed clinical trials.  I was a good candidate because I had had no treatment other than surgery and my cancer was considered incurable due to mets to the liver and beyond.  I jumped at the chance to try a new treatment right away.  It was an experimental pill version of an anti-angiogenesis treatment in a trial sponsored by Novartis. 

Upside: I was realistically optimistic that I was "part of the solution" to cancer research for the future, that I personally had a 50% chance of being in the experimental group receiving a cutting edge new treatment, and that there was reason to hope for better results for me. 

Downside: The treatments could only be given and monitored at one location, which nailed my feet to the floor.  Worse, I had a very bad reaction to the new drug and had to drop it.  I continued with the FOLFOX treatments which were aggressive but which I tolerated reasonably well without the experimental pill.  So much for the placebo theory! It took me some months to stabilize and "get used" to my regular treatments. 

I've now been in treatment for over a year.  In the meantime, I have stopped the Oxaliplatin because of allergic reactions and begun treatment with Avastin, which I am tolerating well.  Without the constraints of a clinical trial, my treatments can be tailored to my own needs and wants, I can take treatment at other locations (I have had a wonderful time living in the country and getting my chemo at the local hospital just 30 miles away) and am reasonably comfortable and optimistic about my future.  I believe my prognosis has improved. 

In fact, when I spoke with my oncologist recently, he mentioned a new trial I could try with a genetic strategy.  However, we both agreed that I personally prize my freedom to go where I want and do as I like more than the off chance that participation in some trial might help me.  The key to any treatment is being able to tolerate it and seeing some kind of good result.  Otherwise, to He** with it!

So, although I am still an eligible "candidate," I feel I can choose against entering a clinical trial in favor of my quality of life without feeling that I have missed out on some silver bullet miracle.  I see plainly that my treatments are palliative, that is, intended to treat symptoms and prolong survival.  Acceptance of this has given me peace of mind and the serenity to face the road ahead with dignity and without fear.  My hope is for continued good times and that I will be able to control the cancer for a long time to come. 


However, when the treatments finally do "fail" and I am in decline, I hope to be well cared for and comfortable for the duration without heroics.  I have informed my family of my wishes and have a living will with advanced directives in place.  So when my time comes, I guess I'll just cut the engines and glide in for a smooth landing.  I hope to cause as little pain to my family over this as possible.  The Good Lord in His infinite wisdom and mercy will see to the rest. 

In the meantime, life goes on. 

This is my own point of view, for what it's worth.  Thanks for listening.  God bless us all. 

Elizabeth

11/26/2004 5:48:13 PM EST, katemm@ writes:  On 26 Nov 2004 at 15:33, Ona Nowina-Sapinski wrote: I just wanted to express my disappointment and depression over the fact that a week ago I asked our oncologist about clinical trials for Robert.  He replied that in the shape Robert is in now, he wouldn't be eligible for any.  So, is it more often than not that by the time you have exhausted all your options and are looking at trials (probably Phase I or Phase II), you are no longer physically going to meet the inclusion qualifications?

This may or may not be true.  It is difficult to be part of the most mature Phase III trials if you have already received most of the drugs and drug combinations.  In addition, many trials want to be sure that both liver and kidneys are in reasonable condition to process drugs. 

If the liver is not functioning well, it may not be able to "clear" drugs from the bloodstream and there will be too much toxicity.  The same is true for kidneys.  So trials may not admit patients whose liver or kidney function tests are abnormal. 

Many trials also look for a "performance status" of 1 or 2 to be sure that patients will be able to withstand treatment.  Finally, some trials want to know that patients have a life expectancy of a certain number of weeks or months. 

All of these factors tend to eliminate patients who are very ill or close to death. 

Phase I trials have the least amount of known information and are only testing safety.  Whether they will be effective or not is really unknown.  We know a bit more about drugs in Phase II trials, including what a safe dosage is. 

Whether this is fair to individual patients or not is difficult to judge.  It is really important to realize that clinical trials -- especially in the early phases -- are research aimed at better treatments for future patients. 

I believe strongly in the clinical trials system.  It has brought us where we are seeing better survival rates and longer lives, but I worry when patients put all their hopes in a clinical trial basket.  A clinical trial does not make a good last resort. 

I wish there was better news . . .

Kate

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Date: Sat, 27 Nov 2004 17:00:26 EST
From: Elizabeth Parcells 
Subject: Re: clinical trial eligibility


11/27/2004 4:24:25 PM EST, jaybyrd1@ writes: This is a complicated subject with no "right" or "wrong" answer.  The recent posts that I have read on this thread have been somewhat conflicted at best.  When one is younger with small children at home to raise, their opinion of what is best may be different than someone who is somewhat older whose children have grown older and are independent. 

Is Oxaliplatin considered "palliative" for someone with stage four disease who is ambulatory and otherwise relatively healthy?  I don't think so.   Certainly not for the person whose liver tumors have shrunk enough while undergoing oxaliplatin treatment to allow for a resection, and I do believe that this has happened. 

Dear Jay,

In case I was misunderstood: I rejoice for anyone who has taken Oxaliplatin and seen their liver mets shrink! Having a shot at liver resection, a tough go, is real hope for recovery.  I encourage every patient to fight with all their might to get treatments that offer them a chance at longer life, remission or cure.  People of any age want to survive.  All of us have reasons to live. 

And, oh yes, any treatment that is aimed at helping reduce or arrest the cancer or relieve symptoms can be considered palliative or curative, depending.  No patient is denied any treatment they can tolerate because they are considered incurable.  I have never noticed a "what's the use?" attitude toward me by my medical team.  They are overjoyed and smiling each time my CT scans come back unchanged.  I am doing much better than expected, in fact. 

We chose an aggressive FOLFOX regemin which I took from October 2003 until March 2004 when the Oxaliplatin started causing rashes and itching (a form of neuropathy).  Now I take the 5FU and Leucovorin with Avastin.  Though there is no "curative intent" I have been helped significantly by the treatments.  I was not lucky enough to see my tumors or mets shrink, but the "good" news is, they have not grown.  Since my mets are to both lobes of the liver and beyond, I will never be a candidate for liver resection.  So I'll take "no new progression" any day! I am clinically in good health and enjoying life right now. 

I will take any and all treatments I believe to be beneficial to me and that Blue Cross will pay for! LOL I don't much care what the FDA says about who the drugs are for.  If my doctor chooses them for me, I'll take 'em! If I choose not to, then so be it. 

Yes, this is a complicated subject and every person must make his/her own decisions.  Every case is different.  As far as my decisions for myself go: The buck stops here. 

God bless you all, Elizabeth

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Date: Sun, 28 Nov 2004 15:58:19 EST
From: Elizabeth Parcells 
Subject: Re: hair

As to coloring hair and chemo: I was advised not to perm or color my hair during chemo.  But I wonder if a little natural henna would hurt? Just a thought...Elizabeth

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Date: Tue, 30 Nov 2004 10:11:56 EST
From: Elizabeth Parcells 
Subject: Re: Status of My Ileostomy Reversal at 9 Months

Dear Rick,

Thanks for your story.  I have a permanent colostomy from my sigmoid resection surgery and you are right.  The reasonable adjustment period is roughly a year, tho it sounds to me like after six months you were already well on your way to recovery.  In our impatient world where we have come to expect immediate results, a year seems like eternity, but it is not.  Your perseverance will inspire and help many others. 

Thanks for sharing! Elizabeth

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Date: Tue, 30 Nov 2004 13:39:21 EST
From: Elizabeth Parcells 
Subject: Re: Questions about PET scan vs. CT scan


I've been thinking about the PET scan thing too.  So far I have had only CT scans.  I know already that there are tiny lesions in my pelvic area that the CT doesn't pick up but which were seen in surgery last year.  Recently my Onc mentioned two "very small" lesions in my right lung that were running somewhat under the radar.  He said in two or three months when we repeat the CT he would let me know if these were going to be bothersome. 

I wonder if a PET scan would tell us more than we need to know.  I'm stage IV and in treatment, with systemic chemo as my only option.  Since surgery and rads are ruled out for me for various reasons, is it really necessary to know in greater detail what tiny new lesions are coming down the road? Is there such a thing as TMI (too much information) with cancer? Should I start or stop agonizing over stuff I can do nothing about? Or is there something out there somewhere that CAN be done? Or would I be subjecting myself to more pain and aggravation from new and aggressive treatments needlessly? ...? ...? ...?

Questions we all ask ourselves and our doctors I'm sure.  I can't say I know the "correct" answer since my reactions to such questions seem to change with what mood I'm in: Fight, coast, whatever, fight harder, search for more answers, coast, whatever, che sera sera, fight, fight, fight, grim determination, deep, heavy sigh. 

Mind bending isn't it?

Elizabeth

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Date: Wed, 1 Dec 2004 00:43:45 EST
From: Elizabeth Parcells
Subject: Re: Questions about PET scan vs. CT scan

11/30/2004 11:42:31 PM EST, kimbyy71@ writes:

I have had two ct scans, one noted a small spot on my liver, but an MRI came back that it was a fatty focal(?) I think.  Before I begin my chemoradiation regime prior to surgery my med. onc. is insisting on my getting a pet ct scan.  He doesn't want to start any treatment until after he gets these results.  So far in the MRI and ct scans they have not seen anything else but my med onc. wants to be sure and I know he specifically is looking at my lungs as well.  I was a bit annoyed with the delay, I couldn't get an appt for a scan until next week, but boy am I glad my doc is on-top of things. 

Kimberly

Dear Kimberly,

What a blessing these scan technologies really are! Even when the results are ambiguous, a mixed blessing, the scans are miraculous diagnostic tools today that are invaluable for managing treatment, the key to long term survival. 

I don't have to imagine the bad old days only a few decades ago: the '50s and '60's when I first had cancer.  The doctors had to perform the dreaded exploratory surgery on me twice!! They would have to cut you open for a diagnosis because the x-rays were so poor and needle biopsies hadn't been invented yet.  It was a horror! And for what? How many cancer patients were lost in exploratory surgery I wonder. 

Nobody talks about exploratory surgery anymore! How barbaric and antiquated! Now you just slip onto the CT scan table and they can see most of what they need to see.  No more tears! My parents waited seven years to know if my treatments had worked.  The only way to tell was that I was still alive! Today we get impatient when we have to wait a week or two for test results! Ah thank goodness for modern times! (I stress over test results like everyone else, believe me!)

Kimberly I am so glad your doctor is on top of things and can give you a diagnosis right now.  A weeks delay to be sure of the diagnosis is no biggie.  I hope all goes well for you.  Remember to thank the pioneering doctors and patients of the past for the wonders of today that help and save so many. 

That's my pitch for the past building a better future.  Elizabeth - cancer survivor for over fifty years and counting. 

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Date: Wed, 1 Dec 2004 00:10:12 EST
From: Elizabeth Parcells
Subject: Re: Questions about PET scan vs. CT scan


11/30/2004 10:48:33 PM EST, Franrauba@ writes:  Hi Elizabeth:  Considering your staging and results from CT scans, I would definitely fight for a PETSCAN.  It could determine if you were eligible for a trial or surgery to eliminate any mets that could be cut out.  Fran

Hi Fran,

Even tho a PET scan may be too much information in my particular case, who wouldn't be curious to see exactly what is going on down there? To think that lesions may be forming beyond what we already know about is unsettling to say the least. 

If I decide to join a clinical trial or need to reconsider surgery (hate the idea) I would push harder for a PET scan.  That nagging hope that all is not lost keeps me fighting on.  It just doesn't feel right to kick back and coast yet.  However, I want to be reasonable too and not demand procedures that will make no difference or do no good, or could even set me back. 

I certainly intend to discuss this issue with my Onc next visit.  Thanks for your thoughts. 

Elizabeth

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Date: Wed, 1 Dec 2004 11:41:55 EST
From: Elizabeth Parcells
Subject: Re: Healing Circle -- Steve


Dear Kate and Steve's healing circle,

I am praying hard for Steve to prevail thru all of this.  He is such a valuable soul! Hoping for the best.  Strength and courage to you. 

Elizabeth

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Date: Wed, 1 Dec 2004 23:05:32 EST
From: Elizabeth Parcells
Subject: Re: post-op. passing blood


Hi,

Don't quote me, I'm no doctor.  But I had colon surgery to remove a sigmoid tumor (with colostomy) and did have something kinda disgusting exit my rectum some week after.  I had been told to expect some mucus and dark or black blood to come out, residue from the healing process I suppose.  It only happened once and there was no other bleeding or discharge after that.  I was told it was nothing to worry about. 

For what it's worth, hope this helps. 

Elizabeth

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Date: Wed, 8 Dec 2004 12:00:41 EST
From: Elizabeth Parcells
Subject: Re: Time to go


Dear Jim,

I wish you and Aurelia peace and courage for both your transitions, into this life and the next. 

Sincerely, Elizabeth (dx colon IV 2003)

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Date: Fri, 10 Dec 2004 15:38:17 EST
From: Elizabeth Parcells
Subject: Re: Hysteroctopy tomorrow


Hi Dagney,

Good luck with the hysterectomy surgery!

About the chemo break, I have had to take breaks from chemo a few times since starting it in October 2003.  I took a six week break in Dec and Jan, then skipped a round to take a Florida vacation.  I will play hooky again this Jan-Feb so that I can go to NY to sing a concert. 

So far there has been no progression of disease and that for over one year, in spite of the breaks in chemo. 

I am not your Onc, he knows best of course.  But for me the breaks were more beneficial than harmful, giving me a much needed respite from the effects and a chance to regain some strength.  I don't believe the breaks had any influence on my outcome. 

I hope that is one less thing to worry about for you,

Elizabeth

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Date: Sat, 11 Dec 2004 01:24:08 EST
From: Elizabeth Parcells
Subject: Re: SSD Social Security Disability

Here's how I went about applying for SSD:

I first spoke to my doctor and the hospital social worker who assured me that I qualified for permanent disability.  It is your doctor that has to sign the application medical portion. 

I got the number of my local office and called in.  They were very helpful, in fact the agent there interviewed me over the phone and filled out the application for me.  the agent didn't want me to come to the public office since I was on chemo and vulnerable to infection.  She was very nice.  I prepared for the interview by first downloading and printing out the application and qualification rules so I had answers to all the questions.  Some of them seemed rather moot like how many hours per day did I need to be on my feet for work and so on.  But you have to answer them all!

Your disability is rather open and shut if you have advanced (incurable) cancer.  So I got my disability status within eight weeks, with no need to appeal or reapply.  Right after that I was able to get my blue parking tag which has made life easier. 

The checks don't start right away since there is a waiting period of three months from the day you became disabled until you are officially declared disabled.  I think this is to make sure you have not "recovered" in the meantime or something.  So you should apply ASAP to avoid waiting too long for your checks. 

I had heard that getting the disability status could be complex and difficult, but that was not my experience.  Things like chronic pain or mood disorders often get booted the first try and you have to jump thru hoops, but a terminal cancer diagnosis gets their attention and they did not give me any trouble at all, in fact they were very very nice about it. 

Hope this helps,

Elizabeth

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Date: Sat, 11 Dec 2004 01:58:47 EST
From: Elizabeth Parcells
Subject: Re: my beloved

12/10/2004 8:52:06 PM EST, nscoates@ writes:  My husband Robert died yesterday.  He was 55. 

I will stay subscribed to the list for a few more days to see if any of you have suggestions on how to cope with grief and despair beyond measure.  I would lay down and die too, except for our two toddlers whom I need to take care of. 

My deepest thanks to all of you for your advice and support over these last few months. 

Ona

Dear Ona,

I am so sorry for your profound loss.  From your posts, I know how hard you fought for his life and how much you loved him.  The memories that pain you now will become treasures you will cherish and pass along to your children.  They will learn from you what a wonderful, loving and courageous father and husband Robert was. 

You ask for suggestions on how to cope.  I know that this group will have many suggestions for you as you reach out for support and consolation.  You are a caregiver, the most valued individual a cancer survivor can have! All of us who are patients will sooner or later have to rely on a caregiver for our needs, and I am sure we all hope it will be someone with your strength and devotion. 

We also know that our loved ones will have to endure the pain of loss and bereavement for our sakes.  That is not a happy thought.  But that pain is the price of great love, and love is a thing beautiful in the eyes of God.  Great love. 

How to cope each day? I think before long you will be telling us how, offering encouragement to others going thru what you have.  On the other side of grief comes wisdom, hard earned and valuable.  You will go on sharing your great love and that will pull you through. 

For now, I can only offer my condolences for your loss and my enduring admiration for you.  The world needs people like you in it to make this life precious and beautiful. 

With love and respect, Elizabeth

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Date: Mon, 13 Dec 2004 00:37:44 EST
From: Elizabeth Parcells
Subject: Re: SSD Social Security Disability


12/11/2004 12:54:48 PM EST, Superdee565@ writes:
EParcells@ writes: {The checks don't start right away since there is a waiting period of three months from the day you became disabled until you are officially declared disabled.}

Aloha -

I believe that the wait is 6 months.  Most people can use their TDI (temporary disability insurance) from their jobs during this period. 

Dear Dagny, I stand corrected.  Chemo brain or something.  And yes, the doctors reports are key to getting accepted. 

EP

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Date: Mon, 13 Dec 2004 20:15:23 EST
From: Elizabeth Parcells
Subject: Re: SSDI vs.SSI and dieting!

12/13/2004 10:32:47 AM EST, katemm@ writes:  I am facing the fact that I've let illness dominate my thinking about health for too long.  I've become overweight, thinking I had no choice. 


Hiya Kate,

Good point.  We should never allow any one issue to dominate our thinking or limit our choices! Even cancer.  I am suitably busy with my cancer but do try to keep up with other things and people as well.  I look on the bright side of my situation.  With all the new problems I have because of illness, some problems have vanished because of it too!

My favorite no-more-worry is that I don't have to do weight loss diets ever again. 

After a lifetime of struggling to keep my weight down, I get to eat whatever I want! Operative word is "want" here, since the appetite is not always good and my weight tends to drop.  So when I feel like some Key Lime Pie, I eat it without guilt! If anything, I can congratulate myself on keeping my weight UP!

Okay, Okay, I know, good nutrition is important now more than ever.  Ya gotta eat the good stuff too.  It's still not okay to load up on sugar, fat and carbs.  I find that a protein rich diet suits me well during chemo. 

Main thing is, we all need to take good care of ourselves.  Kate, I wish you well with your full return to health and fitness.  If you ever want to tap my vast experience with dieting, feel free to write me.  I had it down to a science!

Elizabeth

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Date: Wed, 15 Dec 2004 02:26:50 EST
From: Elizabeth Parcells
Subject: Question on Blood thinners and Avastin

Hello friends,

I have a question.  I recently informed my Onc that I am unwilling to take the blood thinner (Innohep, one daily self injection, a drug similar to Lovenox) anymore.  This is because of nasty side effects that seem to have worsened since beginning Avastin.  I was bruising very badly and bleeding more than seemed right.  Since stopping the blood thinner, I still have nose bleeds and trouble stopping bleeding from small nicks or cuts.  But I am bruising much less. 

The blood thinners were to reduce the chance of embolisms from a DVT in my right leg.  I was told that the chemo therapy, surgery and the cancer itself could have caused the clot to form and that I should take blood thinners daily "forever." But lately I have been most uncomfortable with the daily shots, bruises, welts, nose bleeds and episodes. 

My question: Anyone out there on blood thinners having increased trouble since starting Avastin? Could there be a correlation?

This is really a "Lady or the Tiger" situation.  I don't want to die of an embolism, but I don't want to bleed to death either! Any thoughts?

Thanks, Elizabeth

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Date: Wed, 15 Dec 2004 02:29:54 EST
From: Elizabeth Parcells
Subject: Re: Next CT


I get CTs every two months.  Frequency of scans ordered for cancer patients probably varies widely depending on various factors. 

Elizabeth (Colon IV liver mets and beyond)

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Date: Wed, 15 Dec 2004 13:57:54 EST
From: Elizabeth Parcells
Subject: Re: About me

Dear Kate,

Thanks for your biography.  You are so articulate about cancer and its treatments that I learn a great deal from your posts.  This is THE best list on the subject out there, largely because of your contributions.  You are right to caution each of us to use any information we get with discretion.  Your posts do help round out the info we have to get thinking and make better decisions. 

I admire your perseverance and life energy during all the cancer incidents you've endured.  Each time bad news comes our way it can be devastating.  To pick up and keep on fighting again and again shows "True Grit." Bravo!

With great respect, Elizabeth

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Date: Wed, 15 Dec 2004 13:57:49 EST
From: Elizabeth Parcells
Subject: Re: Question on Blood thinners and Avastin


12/15/2004 7:58:58 AM EST, katemm@ writes:  Lovenox or Innohep is pretty strong medicine.  Low-dose coumadin is the more usual preventive for blood clots.  Was it prescribed because you already had had blood clotting?


Hi Kate, thanks again for your informed insight.  I was put on Coumidin first n Dec. 2003 after spending five days on Heperin in the hospital for pulmonary embolisms to both lungs.  This occurredand four months after surgery and two months after commencing FOLFOX.  The DVT had not been noticed up til then, but the embolisms were visible on a CT scan I had the very week the chest pain and breathing difficulty started.  (I got lucky I guess.) At the time, I was taking a "break" from FOLFOX because of toxicity and side effects. 

Coumidin was going okay until I resumed the FOLFOX in January '04.  I had a couple of bleeding incidents and trouble keeping the values stable since Coumidin and chemo apparently don't mix.  So I started Lovenox.  That was going tolerably well (I hated the twice daily self injections) until I started the Avastin in March '04 when the side effects from the thinner seemed to get worse. 

I see that I have a choice to make: Keep the Avastin in spite of the risks in hopes that it will slow down progression and grant me some extra time, or drop the Avastin (in which I had placed much hope) and take the blood thinner on the chance that a stroke or embolism can be prevented.  Hmmmmmmmmm...........  the Lady or the Tiger?

Yes, I have been talking to my Onc about this.  He is a very good specialist in whom I have faith and he has advised me well so far.  He wasn't thrilled with me dropping the blood thinner, but we had a deal from the start that I would be making the final decisions on my treatments and meds.  So he respected my decision, tho he made his opposing view on it clear.  Mitigating is that my cancer is not progressing (much) and that I am physically active enough to keep the blood moving.  He reserves the right to push the blood thinners later on. 

He is also suggesting moving me over to Erbatux by March (after my NY concert) and considering a trial or new treatment then. 

Thanks again for listening, but this Avastin question might be of interest to many here on the list. 

Elizabeth

----------------------------
Date: Thu, 16 Dec 2004 00:56:45 EST
From: Elizabeth Parcells
Subject: Re: Avastin -Blood Clots & Procrit and Blood clots


12/15/2004 5:58:08 PM EST, ELanzendorfer@ writes:  The onc said no Avastin while on coumidin.  The Avastin brought the CEA level down from 45 to 9. 

Hi Elaine,

I have been on Avastin since March and it did bring my CEA down some.  But lately my CEA level has been creeping up again, from 30ish back to 40ish.  Though CEA is supposedly not a reliable marker, it still seems to get the doctor's attention. 

As I stated in an earlier post, I chose to drop the blood thinner I was taking because of bleeding and bruising.  Your doctor's advice, "no Avastin while on coumidin" caught my eye.  I keep wondering which I should choose, the promising cancer treatment or that annoying blood thinner! With my CEA rising in spite of the Avastin treatment, it may be time to consider a change in treatment after all. 

Thanks, Elizabeth

---------------------------------
Date: Fri, 17 Dec 2004 01:28:04 EST
From: Elizabeth Parcells
Subject: Re: Avastin -Blood Clots & Procrit and Blood clots-reply


Hi Elaine,

Thanks for the words to the wise.  I am aware of the risks of not taking the thinners.  Having gotten thru my embolism incident alive, I know I have used up one of my nine lives.  I am doing my best to weigh the odds and make my choices.  Since my care is palliative, my Onc has told me that the decisions lie with me.  He makes sure I am informed and acting responsibly.  The treatments are helping me live a better, longer and more comfortable life.  However I am focused on quality of life too.  There are some things I want to do. 

I am taking another break from treatment to recover and gain strength.  In March I will begin a new plan of attack.  There are still treatment options for me to consider. 

Again, thanks and good wishes to you and your family, Elizabeth. 

-----------------------------
Date: Sat, 18 Dec 2004 09:57:44 EST
From: Elizabeth Parcells
Subject: Re: Inner Peace


Hi Dr.  Phil,

Thanks for your latest posts on Health Advice and Inner Peace.  I found the smiles and laughter they inspired most helpful to lighten up my mood.  A very capable onc nurse who treats me advises the three things a cancer patient needs most:

"Hope, Humor and Drugs"

Thanks for your steady doses of the second one! Or: Thanks, I needed that!

Elizabeth

---------------------------
Date: Sat, 18 Dec 2004 10:10:45 EST
From: Elizabeth Parcells
Subject: Re: Avastin -Blood Clots & Procrit and Blood clots for Rich


Hi Kate and List friends,

Kate, enjoying a little beer now and then sounds like bad advice medically, but from the "quality of life" point of view it makes perfect sense! So here's a little German poem I'd like to share with the list:

Im Himmel gibt's kein Bier So trinken wir es hier. 

(In Heaven there's no beer, And so we drink it here.)

Coffee doesn't rhymn.  but I'm hoping there's a Starbucks up there. 

Elizabeth

---------------------------------
Date: Thu, 30 Dec 2004 10:11:13 EST
From: Elizabeth Parcells
Subject: Re: Barium Enema?


12/29/2004 10:33:01 PM EST, olis1@ writes:  I've never heard of a BA being a follow up to a colonoscopy.  Usually the other way around. 

Jon

Hi Jon and List Friends,

At the time I had my colonoscopy for suspected colon cancer, the growth in my sigmoid colon was too large to allow the probe to pass it into the rest of the colon.  As a result, a barium test was done to get a look at the rest of the colon prior to surgery.  So the BA can be used as a follow up to a CT under special circumstances. 

Elizabeth

----------------------------
Date: Thu, 30 Dec 2004 17:00:41 EST
From: Elizabeth Parcells
Subject: Re: I'm done with Folfox - WOOOOHOOOOO!


Congratulations! How sweet it is! to have the freedom from the treatments and the bright prospect for feeling better. 

I was on FOLFOX from October 03 until March 04, six months.  The last two treatments gave me such itching that we had to discontinue the Oxaliplatin.  We replaced it with Avastin which I am still taking. 

I have been told that my treatments are palliative and intended to help relieve symptoms and gain time.  Therefore it is my call whether to treat or not.  This freedom has allowed me to feel "in control" of my routine and thus more motivated to take the meds. 

However, after more than a year on chemo with no end in sight (that is a good thing actually) I am longing to take a lengthy break from treatment to regain strength and get my life back. 

I wish all chemo patients and survivors a good outlook and courage during treatment.  We all deserve purple hearts and our caregivers deserve sainthood!

Regards, Elizabeth

------------------------------
Date: Fri, 31 Dec 2004 14:24:48 EST
From: Elizabeth Parcells
Subject: Re: OT - Inspired Giving


What a beautiful message! Thank you and God Bless. 

Elizabeth

--------------------------------
Date: Mon, 3 Jan 2005 23:27:52 EST
From: Elizabeth Parcells
Subject: Re: Forced to quit FOLFOX early?


Hi,

I did FOLFOX for about nine rounds too, but had a bad reaction twice.  I got severe itching (not fun) 30 minutes into the infusion and had to be given benedryl to stop it.  I had neuropathy symptoms from it too which I still have nine months after stopping the Oxaliplatin. 

My Onc told me that Oxaliplatin is not a drug that can or should be taken for extended periods.  It is actually typical for patients to become intolerant by the seventh or eighth round. 

Speaking from the patient's point of view, I was glad to be off the stuff, it was awful.  The Onc pointed out that there are other treatments on the rack to try and that all is not lost just because one drug has to be discontinued.  So, as concerned and disappointed as you may be, think of it as a relief to your Mother and a chance to try something else. 

I don't know anything about the study you mentioned, but I am pretty sure that the Oxaliplatin is still present in my body after all these months.  Maybe it's still therapeutic, who knows?

Best to you and your mother, Elizabeth

---------------------------
Date: Thu, 6 Jan 2005 23:00:17 EST
From: Elizabeth Parcells
Subject: Re: tom


Dear Sharon,

Thanks for your post on Tom.  You and he are an inspiration to me.  I wish you both courage and serenity in the coming time. 

Elizabeth (CC IV Dx 7/03)

-------------------------
Date: Sun, 16 Jan 2005 13:55:17 EST
From: Elizabeth Parcells
Subject: Cancer Awareness Bracelets
X-To: info@countmeblue.com, info@hopebracelet.com


Dear Sirs:

The now famous yellow "Livestrong" bracelets have raised significant awareness and funds for the fight against cancer.  So I was very glad when the blue colorectal cancer awareness bracelets became available.  I ordered 200 of them right away.  I am distributing them to my family and friends and to anyone who will listen. 

As a colon cancer sufferer in an advanced stage.  I am trying very hard to make everyone I can reach aware of this terrible and insidious disease.  By the time symptoms are noticeable, it is usually too late.  My cancer was found too late and there is no cure for me. 

That is why people aged 40 and over MUST act before they become symptomatic by getting screened for colon cancer via colonoscopy.  I have personally encouraged several people near and dear to me to get colonoscopies and in three cases, their lives were saved via early detection. 

With regret I notice that bracelets just like the cancer awareness bracelets are now being sold to express political views, school spirit and soon I am sure, many other fashionable statements. 

Cancer is such a significant threat to the population and awareness so vital and life saving, it is a tragedy to dilute the message with these other bracelets. 

Who will hear our plea over the din of this fad?

Thank you for listening. 

Elizabeth Parcells

----------------------------
Date: Sun, 16 Jan 2005 16:44:12 EST
From: Elizabeth Parcells
Subject: Re: Cancer Awareness Bracelets


My last post is the letter I sent to the producers of these fad bracelets that are competing with the cancer awareness bracelets.  I hope I have at least made my point. 

Thanks, Elizabeth
---------------------------
Date: Thu, 20 Jan 2005 18:33:59 EST
From: Elizabeth Parcells
Subject: Re: achy bones with avastin

Hi,

I have been on Avastin for ten months.  I notice a raspy throat, dry sinuses with nose bleeds in the days following treatments, and over the past few months, very annoying neck muscle and rib pains.  With the 5FU and Leucovorin ongoing, the usual fatigue and queasiness are omnipresent, but I am not experiencing any debilitating effects. 

I have no idea what is causing which pains, but there it is.  I take regular Motrin when I get too uncomfortable.  It is hard to know if side effects or symptoms are "normal" or not.  I have given up jumping to conclusions. 

Elizabeth

--------------------------
Date: Fri, 21 Jan 2005 07:33:25 EST
From: Elizabeth Parcells 
Subject: Re: next?


Hi Cynthia,

The thing the doctor wants to put in your father's shoulder is called a port.  It is placed under the skin on the chest below the collarbone.  The procedure is considered minor and is done outpatient.  The port will be very helpful to your father by making the administration of chemo much easier for him. 

I had a port put in before starting chemo and I would not want to be without it.  The site will be sore for a week, but will heal completely.  The port is accessed with one poke and allows chemo to be infused easily, no need to access veins in the arm which might break down or be harder to access. 

As far as how aggressive his chemo should be, your doctor will consider treatment options according to the patient's general health, age and preferences.  These days, patients who wish to participate in decision making are helping determine their own treatments to optimize therapeutic effect while considering quality of life. 

I know this cancer stuff is complex and confusing, so there are no "dumb questions." Feel free to ask all the questions you need answers to and make sure you understand the doctor's answers. 

Good wishes to you, Elizabeth

---------------------------------
Date: Sat, 22 Jan 2005 20:40:50 EST
From: Elizabeth Parcells
Subject: Re: ebatux stop workin


1/21/2005 9:10:09 AM EST, Rslindley@ writes:  There are lots of stage IV cancerteers that shock their doctors. 


Hi Suzanne.  I would be glad and interested to hear more about the stage IV cancerteers you mentioned.  I would like to be one of those who makes it past the magic five year point.  How are you doing it?

I am taking a break from chemo, ending my Avastin.  Next I will try Erbitux.  I look to the list to hear about similar experiences. 

Elizabeth (CC stage IV dx 7/2003)

---------------------------------
Date: Mon, 31 Jan 2005 10:30:11 EST
From: Elizabeth Parcells
Subject: Locks of Love and Donor Intent


Hello List Friends,

I would like to add a few comments to the discussion below:

Wigs for kids is certainly a worthy charity in my view.  The other question is, does the organization accepting donations and providing the wigs adhere to the high fiduciary and moral standards required of a 501(c)3 charitable organization?

From my experience (25 years on the stage wearing all kinds of wigs), I know that hand made custom wigs of real human hair are not cheap.  Anywhere from $1000 to $3000 is not unreasonable depending on length and quality of the hair and the labor involved.  It takes the equivalent of three "heads of hair" to make just one such wig, so of course, donated hair has to be sorted for type and quality and then combined to produce each wig.  Human hair wigs are also more difficult to maintain since they need regular styling and cleaning to be worn properly. 

Artificial hair wigs are very inexpensive compared to custom human hair wigs.  $100 or less will buy you a nice one.  They are very easy to maintain, simply hand washed in the sink and dried, ready to wear again with a simple comb-out.  (I myself have been using such a wig to look better in spite of my thinning pate.) But young children can look conspicuous and awkward with an artificial hair wig.  The advantage of a custom human hair wig is that it can look much softer and more natural on a child. 

So I find it plausible that an organization like "Locks of Love" could be spending an average of two grand per wig, and even that their CEO is paid fifty grand a year.  I also accept the raising of cash from selling unsuitable or unused hair to pay for wig manufacture. 

Disturbing is that accurate audited financial reports of this or any other 501(c)3 charitable organization are not made readily available for donors and the public to review!! Donors absolutely should follow up on organizations to which they give to be sure that their intent is being appropriately honored.  Tax exempt charitables are bound by law to provide financial information on request. 

So, DONOR BEWARE! But then, that rule applies to all charitables and all donors.  Hope this helps. 

Elizabeth

1/30/2005 9:46:44 PM EST, katemm@ writes:

On 30 Jan 2005 at 19:27, Arlene Margolis wrote: I hope this gives the info you desire.   http://www.give.org/reports/care2_dyn.asp?733  > > 1/30/2005 7:09:15 P.M. EST, > robin_hannel@ writes: > > Dear list, > Hoping this question is acceptable here as it is not directly colon.  I have > been asked to donate my hair this coming May to Locks of Love.  Does anyone > know the recommendations for this?

I read the charity report on Locks of Love and am a bit disturbed by it.  They raised about $375,000 and provided 113 real hair wigs and 39 artificial wigs.  That comes out to about $2,500 per wig donated.  That seems high, but perhaps it is not. 

Also, $150,000 of that money came from selling hair.  So your donation of hair may only indirectly help children in need of wigs when it is sold to raise money.  Another $200,000 came from cash donations. 

They have an Executive Director who is paid about $50,000.   In addition, they cannot provide an audited financial statement.   I may be way off base on this one, but perhaps this is not the best use of volunteer gifts. 

Kate

------------------------------------
Date: Sat, 5 Feb 2005 11:36:28 EST
From: Elizabeth Parcells
Subject: Re: Avastin/Nasal complications


2/4/2005 11:31:13 AM EST, Deborah.Schab@ writes: I am wondering if anyone has had sinus/nasal problems as a complication of Avastin.  I know that Avastin can cause bleeding in the colon, small bowel, and other epithelial linings.  The sinus area contains these same type of cells, so I thought this might be the cause of my sister's problem.  She has been having blowing blood from her nose since she was on Avastin.  The Avastin was discontinued in July, but the nose problems continue.  Now there is a small spot showing up on her PET scan in the nasopharynx.  I am hoping it could just be inflammation or irritation from the damage done by Avastin.  Any chance my assumption could be correct? I do not want to think it is the other alternative, such as a distant metastasis. 

Can anyone tell me if there's a connection with Avastin and nasal side effects. 

Thank you in advance for any help you can give. 


Hi Deborah,

About the problem you mention below, I am on Avastin and have noticed the same thing: bleeding nose, increased bleeding in general in fact, and some gravel in my voice that wasn't there before.  (I am 53, a professional singer, dx cc 7/03 stage IV with mets to liver and pelvis, recently noticed lung spots) As a singer I am hyper-sensitive to changes to my voice and mucus membranes in the sinuses.  Others on this list have reported the same effect from Avastin so I am not imagining it. 

But I don't believe this side effect is serious or life threatening in any way.  For me it's just a damned nuisance! (Laughing a little) So don't panic.  I have decided that if the Avastin can help with the much larger problem of the cancer itself, I can put up with a few nose bleeds and gravel in the voice. 

In fact, this month I will be singing on three different concerts in spite of my compromised singing voice.  I am not taking this cancer thing lying down, y'know, and will sing until they carry me off the stage!

Yes to life! Elizabeth

-------------------------
Date: Fri, 11 Feb 2005 12:41:11 EST
From: Elizabeth Parcells
Subject: Re: CEA tests

2/10/2005 12:11:27 AM EST, Franrauba@ writes:  Hi Merle:

As Ray said CEA is not a reliable indicator for everyone.  My CEA did not rise when I had a met to the lung and usually remains pretty much the same within a few fraction points.  My Onc therefore relies on symptoms and exam to determine if I need a CT or PET scan or any other diagnostic test.  I see him every 4 months with blood work done before the visit.  Hope this helps.  Fran


I too am mystified by the CEA values.  I've been told they are not reliable markers, but have noticed that the doctor pays keen attention to them none the less.  Prior to surgery, mine were up in the 160 range, tho I was told that much higher values are seen at this stage too, like 800 or even over 1000! yikes.  After surgery to remove the primary tumor in 2003, my CEA dropped to under 30, stayed there for some months.  Last summer it began to creep up again, first to 33 then 37, then to 44.  The doctor has not suggested a change in treatment until recently when he noticed two very small lung spots, but was relying on CT scans as the deciding factor.  The cancer has been stable all along.  In March, depending on what the next scan shows, we will talk about changing the treatment.  Or not... ??? hmmmm......

So, I don't exactly know what this CEA thing means for real.  An indicator as they say, I suppose.  I'm keeping an open mind. 

Elizabeth

-----------------------------
Date: Fri, 11 Feb 2005 23:41:42 EST
From: Elizabeth Parcells
Subject: Carnegie Hall and Blue Buddy Bracelets

Hello everyone,

I'm Elizabeth Parcells, 53, dx CC 7/2003 at stage IV.  I've been thru the wringer since then but am feeling better and stronger these days.  In my "real" life, I am a professional classical singer with a successful singing career to look back on.  After I became ill, I thought I would never sing again.  (Prognosis was pretty gloomy!) But here I am, not out of the woods, but still in the game! I can't express how great it feels to be getting back into my life! Knowledge is power, and this [COLON] list has helped me learn how to survive. 

On February 23, 2005 I will be performing on a concert at Weill Recital Hall at Carnegie Hall, New York.  On that occasion I plan to kick off the CC Awareness month by distributing blue bracelets and urging my audience to be vigilant with their health, to find the cancer early, to avoid my fate.  Claude Debussy, the great French composer, died of colon cancer in 1918.  His very last composition, Suite for Violin and Piano will be performed on this concert. 

If any of you are in the New York City area on Feb 23, I would love it if you could come to the Carnegie concert.  Tickets are only $20 and there's a blue bracelet in it for you!

Cheers and warm regards to you all, Elizabeth

--------------------------
Date: Sat, 12 Feb 2005 22:22:34 EST
From: Elizabeth Parcells
Subject: Re: Unlocking the Pearly Gates


Dear Sheila,

It is hard to find the right words.  Know that you are in my prayers and thoughts and those of your many friends here.  I wish you continued strength and comfort in the coming days.  Prayers and blessing to you and your family.  Love lives forever.  Elizabeth

--------------------------
Date: Tue, 15 Feb 2005 21:25:27 EST
From: Elizabeth Parcells
Subject: Re: Carnegie Hall and Blue Buddy Bracelets


Hi, I may be a very, very distant cousin of the coach, but do not know him personally.  Why don't we send him a buddy bracelet anyway? Everyone could use one!

Elizabeth

--------------------------
Date: Tue, 8 Mar 2005 12:31:56 EST
From: Elizabeth Parcells
Subject: Carnegie Concert and the Blue Bracelets

Hello fellow survivors and caregivers, This is Elizabeth Parcells reporting back to you on the Feb.  23 concert at Carnegie Hall in which I participated.  Success! Here is an excerpt from the first concert review which will appear next month in a New York City Concert periodical: ************************************** Maria Bachmann, violin Jon Klibonoff, piano Elizabeth Parcells, soprano Felix Justen, guitar Weill Recital Hall at Carnegie Hall February 23, 2005 On Pro Musicis February 23rd concert, one of the most memorable nights of the season, Maria Bachmann and Jon Klibonoff were impeccable, and Elizabeth Parcells made a heroic return to the stage after battling cancer during a two-year absence.  Parcells brought along her long-time musical partner, guitarist Felix Justen, and presented music by Roberto Gerhard and Jacques Bondon.  She sang admirably and tenderly, inspiring the large crowd in attendance.  Gerhards selections were from his Cantares: Seven Spanish Songs for Voice and Guitar.   Parcells lent a silken beauty to her high register and a solemnity to her low, and she brought integrity and profound calm to her performance.  Understandably, her voice sounds a bit weak and withdrawn, but one couldn't have asked for more in this first comeback.   Justen's guitar playing was her fine compliment, although at times he was dynamically overpowering.  In Jacques Bondons Trois Complaintes for Soprano and Guitar, Parcells brought darker and more spiritual aspects to her characterizations, especially in the middle movement in which deep sadness is depicted, and in the uplifting final movement.  Everyone, it seemed, could sense the irony, as if Parcells was living and breathing this music based on her own recent experience........ A decorative, yet loyal arrangement of Summertime (from G. Gershwin's "Porgy and Bess"), performed by all four of the evening's artists, brought this unforgettable concert to a heart-warming conclusion. -Anthony Aibel **************************************** Before I began to sing, I made a few remarks.  I thanked Pro Musicis Foundation for their faith in me over the years, and especially when they invited me to sing in spite of my cancer situation.  Then I spoke directly to my audience and told them that I had a very personal message and a gift for each one of them.  I asked them to be aware that colon cancer can be treated early and even prevented by a colonoscopy, that there was a buddy bracelet for each of them to remind them or a loved one of this, to get the bracelet, to wear it for me, and get the test for themselves.  I added that if my initiative saved but one life, it would all be worth it.  When I came back on stage after the intermission, it was a joy to see a blue bracelet on every wrist in the hall! Of all the triumphs I could wish for as a singer and a human being, this was the greatest moment of all.  Warm regards and love to you all, Elizabeth

----------------------------
Date: Tue, 8 Mar 2005 13:06:25 EST
From: Elizabeth Parcells
Subject: Decision Point and Pain Management


Hello, its me again, (CC dx 7/03 stage IV Liver, lung and pelvic mets)

Back from my feel-good trip to New York, it is time for real life again.  So on Friday I had my routine CT scan, and yesterday I met with my oncologist to discuss our next moves. 

The CT scan shows that, since November, the liver lesions are active again and increasing in size.  Also, several lung mets are now clearly visible.  I had been on 5FU, Leucovorin and Avastin for over ten months before I took a break from all treatment to prepare for my concert in NY.  Indication is that the treatment had already stopped working and it was time for a change.  The oncologist urged that we begin Camptosar asap, which will be Monday next. 

I asked about any new treatments that could target the liver, such as the SIR Sphere radiation delivery technique, but was told once again that, since my cancer has spread beyond the liver to lungs and pelvis, that systemic chemo is my only real option.  Any comments on this?

Also, I have been having pain in my right ribcage and right shoulder areas, more or less severe, for many months.  The pain has become very aggravating lately (the location of this pain impairs my breathing for singing and I felt that keenly on stage this time) and I asked what I should do about it.  The oncologist said that this pain is typical for liver conditions and that only a pain killer of some kind is indicated.  Now that I realize it's not just a pulled muscle and in fact that this pain is cancer related, I am thinking hard about pain management.  Any comments on this would be appreciated. 

I am really looking for pain relief without messing up my stomach or undue damage to my liver, or is this mission impossible? I am sure many of you face the same challenge, so your experience will help many more of us.  Thanks, you guys! Elizabeth

--------------------------------
Date: Tue, 8 Mar 2005 13:11:55 EST
From: Elizabeth Parcells
Subject: Re: Carnegie Concert and the Blue Bracelets
X-To: katemm@


Hi Kate,

You reach many hundreds of people, maybe even thousands, with this listserver! What a "niche" !!

You are right tho, each of us has an opportunity to make a difference every day.  Let's keep doing what we're doing!

So many clueless denialists, so little time! :)

Elizabeth

---------------------------------
Date: Fri, 18 Mar 2005 23:44:28 EST
From: Elizabeth Parcells
Subject: Re: Quality of life

3/16/2005 11:53:25 PM EST, houmeri@ writes:  Tony's cancer has become systemic.   His oncology team are now talking about extending his life rather than a cure, although they haven't given up on that entirely.   It's important to both of us that Tony's remaining time be as good as we can make it.  Can anyone else recommend medications/lifestyle changes that can keep the quality of life high for as long as possible? Norma

Seize the day, put no trust in tomorrow.

Hi Norma, hello friends,

Quality of life becomes the main issue for those of us no longer seeking a cure.  I was told at diagnosis that my case is incurable and that, without treatment, I had a year or less to live.  So in the first phase I opted for aggressive treatment, hoping to at least gain more time.  I am very glad for the time I have won, giving me a chance to live my life and look for more treatment opps to extend my life.  It has turned out to be a strange balance between my willingness to endure the rigors of chemo and my determination to have quality of life in spite of it. 

The compromise for me and my oncologist is to provide theraputic treatment that relieves symptoms and prolongs life (the word is palliative) and still leaves me feeling well enough to pursue favorite activities.  I have been thru many months of FOLFOX, Avastin and recently, Camptosar.  There have been complications like DVT with PEs, dehydration from excessive fluid loss, trouble eating, things that are not cancer symptoms but rather treatment side effects, along with the expected nausea, fatigue and so on. 

I have seen fit from time to time to take "breaks" from treatment to regain my strength and well being and to have quality of life to do things like take a family vacation, finish an important project or perform on concerts.  These reprieves have been very important to me, giving me the feeling that I am still truly alive, not defined by my illness. 

When I do have to go thru treatment and unpleasant times, I take to my bed and make my surroundings as comfortable and comforting as possible.  I have wonderful caregivers to help me.  Lately I have been having pain from the liver mets and have been thinking about pain management.  I try to deal with pain by resting, taking baths, keeping my mind occupied, trying to relax.  The pain is worse when I over do it. 

I too am looking for ways to make my time as comfortable and good as possible.  There will come a point when I decide to drop the treatments, probably when their effectiveness has been exhausted.  Actually that sounds pretty good to me right now! Chemo is nasty! In the meantime, I am fighting for more time and hoping for better times. 

An observation I have made: there is a profound difference in thinking between patients who have a chance at a cure and those who do not.  For patients hoping for a cure, quality of life can wait as they pursue every treatment avenue open to them, willing to do whatever it takes to improve their chances of survival.  This is obvious. 

Patients like me for whom there is no cure find themselves more and more interested in making the most of the time they have.  I never thought I would hear myself say that quality of life has become more important to me than quantity.  It is as if my most basic survival instinct, survival at all costs, has been reprogrammed.  I have truly had a change of heart on this issue. 

We talk a lot about positive mental attitude in the fight against cancer.  Quality of life is very much about attitude, emotional and spiritual well being.  These are easier to maintain when the body is not in pain or distress.  Any help I can get to feel comfortable, free from pain and happy are more important to me now than living an extra month or two thanks to some unpleasant treatment. 

It is hard to trust the future when it is so uncertain.  It is hard to face decisions like this when you are unsure and feel so inadequately informed.  I have second thoughts and wonder "what if?" One thing is certain, the only one who can know what is right for the patient is the patient himself.  Each of us has to decide what is right for ourselves.  These are tough decisions which earn respect. 

Thanks for listening, Elizabeth

------------------------------
Date: Tue, 22 Mar 2005 22:36:31 EST
From: Elizabeth Parcells 
Subject: Re: Liver challenges - continued

Hi Harry and Bella,

I am so glad that Bella was able to travel and visit her grandchild as she so dearly wished.  Some things are just that important.  I sure am glad I took some quality time (away from treatment) for my heart's wish too, I'll never regret it. 

Here's prayers, energy and support coming your way from me. 

Elizabeth

----------------------------
Date: Wed, 23 Mar 2005 13:43:42 EST
From: Elizabeth Parcells
Subject: Re: Liver challenges - Miracles

Hi,

Miracles are wonderful.  Each of us has experienced them if we know where to look.  Some miracles seem common because they happen every day, like life for instance.  Others seem more special because they seem to occur less frequently, like unexplainable cures.  Miracles come in large and small, ordinary and extraordinary, hoped for and unexpected. 

We all hope for miracles, a few of us dare to ask for them.  The very possibility of a miracle keeps our hopes alive, our faith strong.  And hope is what keeps us mortals striving and living onward. 

I see miracles all around me, all the time.  We may not receive the miracle we prayed for, but God in his infinite love and wisdom will give us something even better.  So, along with faith and hope, there is trust. 

As a "hopeless case" myself, it is ironic that hope is a greater part of my life than ever before.  I am more full of hope now than before I became ill.  So I am really a "hope-more case." The trust part is accepting a higher wisdom that knows better than I do what I truly need.  Being hopeful, I continue to pursue treatments and do all I can do to help the miracle along.  (Like the old story of the drowning man who trusted God to save him, but drowned anyway, to which God replied, Why didn't you get into the boat I sent you?)

Well, thanks again for listening, Elizabeth

-----------------------------
Date: Thu, 24 Mar 2005 17:35:31 EST
From: Elizabeth Parcells
Subject: Re: Blood clots, Coumadin, and Avastin

Hi Colleen,

Yes, I have experience with this.  I had a DVT clot form in my leg which embolised to the lungs in Dec. 03.  The embolisms were noticed on a chest CT and I was having symptoms (severe chest pain, difficulty breathing) so I was hospitalized on Heperin for five days, after which I began Coumadin.  At the time I was on FOLFOX which made the Coumadin too unstable to use safely.  I was switched to Lovenox, a dense molecular heperin that is more reliable in tandem with chemo. 

I had problems with bruising and welts from the twice daily self injections, and bruising from minor trauma like brushin my leg against a coffee table, very annoying!

When I switched from Oxaliplatin to Avastin, the bruising and bleeding problems seemed to get worse.  My injection sites looked like battlefields and I was running out of places to inject.  I HATED the whole thing.  So finally, after eight months, I simply decreed that I would not take the blood thinner anymore.  NOT recommended! But hey, I'm stubborn. 

I knew I was taking a chance that the clot could embolise again, this time, with possibly fatal results, but I was determined to finish the Avastin.  I am not saying this was a wise or even educated move on my part.  But that's what I did.  The Avastin did stop working for me eventually so that I have changed over to Camptosar.  But I am very naughty, and have not resumed the blood thinner injections.  I DO NOT recommend this course of action to anyone, it is what I took upon myself to do. 

The doctor has told me that chemo MAY help, that blood thinners MAY prevent embolisms, that Avastin helps in SOME cases; not exactly cast in bronze if you ask me.  So I weighed the "options" and acted on my own instinct and personal preferences.  That is why I say, each of us has to make decisions for ourselves, based on sketchy information, unreliable prognosis, and things that cannot be known.  Lady or the Tiger? Do we feel unsure? Am I still here? You bet!

Anyway, I wish I could offer you a clear path to your decisions, but the truth is, no one can.  Just decide. 

Good Luck! Elizabeth

-----------------------------
Date: Thu, 24 Mar 2005 20:43:59 EST
From: Elizabeth Parcells
Subject: Re: Liver challenges - continued

Dear Jenny,

Thanks for your post.  You wrote: >>Will my next CT show evidence that I took 7 weeks off treatment? Perhaps, but what it will not show is the real story - that I danced all night at our only child's wedding. 

You are right - some things are just that important.  Jenny<<

Yes they are. 

Onward! Elizabeth

---------------------------------
Date: Fri, 25 Mar 2005 19:53:07 EST
From: Elizabeth Parcells
Subject: Re: What do we tell the patient?

Hello friends,

Reading all the posts on this topic, I realize again how individual each case is.  Still, even in the case of a child, when it's bad news, the patient has a right to know.  The art is in the telling. 

When I had cancer in childhood, no one ever said the C word to me.  I was in my twenties before I discovered that the thing that had haunted my dreams and had damaged my body was indeed cancer, an inoperable Neuroblastoma diagnosed in 1953 when I was two.  But even after the danger had long passed, my parents and physicians never told me what had happened.  I had to sleuth it out for myself! Lo and behold, as a 20 year old, I went thru all the stages of grief over my cancer as if it were just happening to me.  It took time, but I worked it out by myself. 

The thing that angered me most at the time was that I was to be released into adulthood, expected to take responsibility for myself and my health, with no knowledge of my history!

This time when I was diagnosed as a fifty year old, there were no parents, husbands or guardians to take the news for me.  The doctor had no one to "fall back on" and told me directly and completely what was wrong.  After my earlier experiences, I found it refreshing! I was glad and determined to be in the driver's seat this time, calling the shots if you will.  And, difficult as it was, I lost no time informing my loved ones.  The truth is stringent, it stings as it cleanses. 

I realize that there are individuals who may not be capable of advocating for themselves and need the help of others to deal with their condition.  This is a prayer for understanding. 

The Art is in the Telling. 

Elizabeth

P.S.  It's no wonder that nobody wants to be the bearer of bad tidings.  Messengers have been shot for less!! :)

-------------------------------
Date: Sat, 26 Mar 2005 18:19:35 EST
From: Elizabeth Parcells 
Subject: Re: I need advice!


Dear Andrea,

I am older than you, but wanted to comment anyway.  Since it is unusual for a 29 year old to get colon cancer, it is often missed until it is late stage.  You can consider yourself extremely lucky that this was caught so early. 

You are correct to get second opinions because then you will have more confidence in your treatment decisions.  Don't be afraid. 

There are many places on the web that have information on colon cancer with decision trees and treatment descriptions on them.  Use all your resources to be as informed as possible. 

The many friends on this list server will be a great pool of experience to help guide you too. 

Count your blessings! If you don't have to take Chemo, that is GOOD! Believe me. 

Elizabeth

-------------------------------
Date: Sun, 27 Mar 2005 22:57:46 EST
From: Elizabeth Parcells
Subject: Re: Treatment options for resected metastatic Stage lV.

3/27/2005 11:09:23 AM EST, Jtracewear@ writes:

The oncologist was very confident and straightforward with my first-line regimen of chemotherapy.  This time the Doctors seem to be indecisive and that is very disconcerting for me. 

Hi Janet, I am in similar straits as you.  After my surgery in Aug 03 I was started on FOLFOX which I took for ten months.  Next I was on 5FU, Leucovorin and Avastin, also for about ten months.  Currently I am taking Camptosar alone.  The decision process in each case was the oncologist giving me options, his educated recommendation, and me deciding what I would do.  Usually I would go with what the doctor recommended. 

As a stage IV, my oncologist has explained to me that I should stay on some kind of treatment indefinitely.  Since my cancer has progressed some, I agree with him.  He also told me that I could choose to take treatment or not. 

My treatment goal is palliative, that is, to slow or stop progression of disease, relieve symptoms, prolong survival without sacrificing too much quality of life.  The treatments I choose need to be compatible with this goal. 

It is a problem if your doctors make an indecisive impression on you.  However this may be because they need to know what your treatment goal is.  They provide you with options and information, and then they help you decide what you want to do.  It's a little like a financial advisor helping you decide what to do with your money, long term investments or income producers or quick cash, depending on your needs.  It is up to you. 

We are faced with many decisions along the way.  The doctors can help us decide, but we need to tell them what we want. 

I hope this helps a little.  Regards, Elizabeth
----------------------------------

----------------------------------
Date: Wed, 30 Mar 2005 13:28:48 EST
From: Elizabeth Parcells
Subject: Get in the Boat - Therasphere radiation to the liver


Hello all,

Good news! I have been accepted for Therasphere radiation therapy to the liver (go to  http://www.mds.nordion.com/therasphere/  http://www.mds.nordion.com/therasphere/  to see more info) and will begin in April.  I am thankful for this opportunity and hopeful that this will bring significant benefit in the short term to reduce my liver tumor load and perhaps relieve my liver pain. 

I discovered this new treatment in the Wall Street Journal, reading investor news on medical topics.  After some research online and some consultations, I was referred to the doctor in Chicago that performs this procedure. 

At first I worried that I was ineligible because the treatment is FDA approved in this country for primary liver cancer only.  In fact, my oncologist had already ruled out radiation or surgery in my case because of my prior history and did not believe that I would be considered a candidate for it. 

But NW Hospital in Chicago does offer Therasphere treatment as off-label/compassionate use to patients with secondary liver mets and even extra-hepatic disease under the correct conditions.  Because the treatment is truly targeted, it will not burden my other tissues as more conventional methods of radiation would do. 

So I sent down my latest oncology records, blood work and CT scans (on CD ROM, so cool) and waited to see what they would say.  I am happy to report that I have indeed been given an appointment for evaluation on April 11 and am considered a GOOD candidate!

I will report back to you on my experience with it.  This could be a good treatment opportunity for some of us stage IVs to treat our unresectable liver tumors, even in the face of mets beyond the liver.  It is certainly worth a look and a question to your doctors.  But be persistent, since this treatment is new and only offered at a few locations so far.  I had to ask and ask again.  Thanks to my patient advocate at Blue Cross and some members of our ACOR list who have had this treatment and wrote to encourage me, I too will be able to benefit. 

I am reminded again of the drowning man who trusted God to save him.  Only this time, he gets into the boat!

Regards, Elizabeth

--------------------------------
Date: Wed, 30 Mar 2005 14:27:02 EST
From: Elizabeth Parcells
Subject: Re: Get in the Boat - Therasphere radiation to the liver

3/30/2005 2:15:48 PM EST, jaybyrd1@ writes:   Therasphere procedure was available as early as 2001.   I'm confused by the different names (Therasphere versus Sirsphere) for what seems like basically the same procedure ... what is (if any) the difference in the two?


Hi,

Therasphere and Sirsphere are two like products from two different companies.  http://www.sirtex.com/  http://www.sirtex.com/  is the sirshere site, http://www.mds.nordion.com/therasphere/  http://www.mds.nordion.com/therasphere/  is the site of the therasphere makers.  Hospitals offer the therapy using one or the other product.  They each do the same thing. 

I was never offered the "micro sphere" style treatment by my doctors, nor have I seen it mentioned on any colon cancer site where one looks for treatment options.  (Or maybe I wasn't looking hard enough?) I feel like I had to go on a safari expedition to find this out on my own.  Obviously this is not yet considered a "standard of care" treatment for liver mets. 

I keep searching high and low for options that have not been mentioned yet.  This demonstrates how very important it is for us patients to be pro-active and involved in the treatment process. 

Elizabeth

----------------------------------
Date: Wed, 30 Mar 2005 14:39:06 EST
From: Elizabeth Parcells
Subject: Re: Colonoscopy

3/30/2005 2:33:59 PM EST, CWITTE@ writes:  They are giving me the runaround. 


Hi Constance,

Don't let them get away with this.  I hope you find lots of support and help to make sure this doesn't happen to anyone else. 

Elizabeth

----------------------------
Date: Wed, 30 Mar 2005 18:27:44 EST
From: Elizabeth Parcells
Subject: Re: Get in the Boat - Therasphere radiation to the liver


3/30/2005 5:35:15 PM EST, jaybyrd1@ writes:  I agree with you in that it appears to be an under utilized option for many with liver mets. 

It is curious that this type of therapy is so slow to take in this country when the outcomes reported from the trials are so promising.  I reserve judgment in my own case until I actually have the treatment, but from what I have read on websites and heard from patients, this therapy is very effective.  That is why I am so hopeful. 

It is not a cure in my case or even a replacement for systemic chemo, I know that.  But relief from pain and prolonged survival are just as important treatment goals to me.  I am hoping to add at least several months median survival time to my prognosis. 

The pain and frustration of waiting for systemic chemo to control progression of these tumors has worn me down, especially as I counted off treatments to which I became intolerant or which stopped working.  Lots of us have felt this frustration, dreading the day when they tell you, there is nothing more. 

Therasphere/Sirsphere therapy is already standard treatment in other parts of the world, Australia, New Zealand, Asia.  But I feel as though I had to "stumble" upon it by chance in this great nation of ours.  Very curious indeed! Makes you wonder what else might be lurking out there...  I will never give up looking. 

Elizabeth

--------------------------------
Date: Wed, 30 Mar 2005 23:20:48 EST
From: Elizabeth Parcells
Subject: Re: mom's hemicolectomy is done

3/30/2005 10:38:53 PM EST, makeupbuddha@ writes:  on a positive note, the dr.  said she only saw one spot, which gives me hope that if there is any spread, it is confined and can be treated more successfully than multiple mets.  on a frightening note, I've read that a met would mean a stage IV diagnosis, and the average survival period for this stage is less than two years.  is this true? I'm so scared!!!


Hi Truc,

A stage IV diagnosis would be scary, but for now, hope for the best and try not to be scared.  The statistics you have been quoted are for all stage IVs but there are differences.  If the liver has only one lobe involved and no mets beyond the liver are detected, then the liver can be treated effectively right away.  If this is so, even an NED (no evidence of disease) is not out of the question.  You will hear from people on this list with stage IV who have survived much longer than "average" and some with remarkable stories. 

Statistics cannot be applied to individuals, since each case and each person is different.  Who wants to be "average" anyway? Why not be extraordinary!

I pray for your Mom that she gets the best possible prognosis and the best possible treatment! Meanwhile, don't let the statistics rule you. 

Elizabeth

-----------------------------
Date: Thu, 31 Mar 2005 00:22:31 EST
From: Elizabeth Parcells
Subject: Re: Get in the Boat - Therasphere radiation to the liver

Hello Harry and Bella too,

I hope for you and with you! I will be interested to hear more, and I promise to report back on what I learn in Chicago.  April 11 is going to be a very long day for me! Evaluation takes all day.  Then I will know for sure if the treatment is for me.  Hey, I even get to skip a round of Camptosar for this, cause for celebration right there!

Meantime, I'm praying hard for us all. 

Elizabeth

--------------------------------
Date: Fri, 1 Apr 2005 23:36:28 EST
From: Elizabeth Parcells
Subject: Re: Get in the Boat - Therasphere radiation to the liver

4/1/2005 3:04:07 PM EST, lovellom@ writes:  Hi Elizabeth, I will be waiting to hear of your success with this new treatment, tell me do you have lung mets also? I am Stage IV with multiple liver & lung mets & at this time have an inoperable liver.  But my chemo treatments are continually shrinking the tumors. 

Margret


Dear Margret,

Glad to hear that your tumors are shrinking.  I hope this opens up some more treatment options for you. 

Yes, I have mets beyond the liver, to the lungs and some to the pelvic area.  So far, the chemo I have been taking since 10/03 has not reduced any of my tumors, but at least until recently there was no progression.  I'm hoping this treatment will finally reduce the liver tumor load the chemo did not. 

Good luck to you that you continue to see improvement. 

Elizabeth

-----------------------------
Date: Sun, 3 Apr 2005 17:31:43 EDT
From: Elizabeth Parcells
Subject: Re: to Johann J

To Johann and all the other Johanns of this world:

Ditto and Amen to all the wonderful posts to you thus far! You see the power of compassion and support in the list members' reactions and responses to your plight.  So much sharing and good advice!

Think about it, if perfect strangers can show you such an outpouring of love and support over the Internet, think how wonderful and comforting it will be to have the love and support of your dear loved ones! The Art is in the Telling.  Tell them how much you love them and how concerned you are for their welfare.  Then say you are facing a great challenge and need their love and support.  Tell them exactly how they can help you so they are not at a loss, and then assure them that together, you will overcome all difficulties. 

Find the words to tell them yourself.  Sooner or later, they will find it out, and it is far better they hear it from you first.  Remember, they will need YOUR support too.  Stand tall in the truth.  That is what family is all about. 

How you deal with the workplace is another matter.  At work, your health issues are your private business.  Take a sick leave and the less said the better.  Again, they will probably find out, but not necessarily from you.  Since you are going to recover, of course!

Your initial reaction to the news that you have cancer is natural, but you won't be this upset all the time.  When you are feeling calmer, take a hard, objective look at your situation.  Begin the great learning process we all have to tackle to find out as much as we can about our condition and our options.  Then we can work with our medical team as pro-active partners.  You will need your wits about you as you hear test results and recommendations from your doctors and try to learn how to interpret them correctly.  Take someone along to appointments and take notes. 

The Internet is a great tool for learning about your condition and all aspects of coping with it.  You may not think so now, but knowledge can actually reduce your fear.  Know the enemy well and you will conquer it.  Do not fear the unknown, expose it.  Soon you will be poised and fearless in the face of the Beast.  Faith and Trust will give you back your Hope. 

Me? I am practicing what I preach.  As a stage IV colon cancer patient, my outlook is not great.  But I am finding the strength and spirit to keep fighting because I have the love and support of my family.  Could I keep something like this from them? They would not have it! I am sure your father and your daughter love you very much.  Your circle of love will sustain all three of you through whatever comes. 

Thanks for listening, Elizabeth

-----------------------------------
Date: Sun, 3 Apr 2005 17:43:12 EDT
From: Elizabeth Parcells 
Subject: Re: family

4/3/2005 8:45:49 AM EST, nanaj1151@ writes:  What I've learned from all this is priceless.  I've learned to not sweat the little stuff, just fix it and go on.  I've seen the courage, love and true caring from the people on this list.  It has helped fill the emptiness in my heart.  Because for a very long time all I could see ahead was emptiness, darkness. 

So right now I hope that somehow these simple words can help with the emptiness in someone else's heart and maybe help them go on. 

Jean


Dear Jean,

I am sure your words will help many here.  Your story moved me.  I survived childhood cancer (by some miracle I'm told) and often times I have thought of the many youngsters who did not.  Survival is a joyous thing to be celebrated, but a pang of sadness always lingers.  I have lived my life since then with both joy and pangs, bittersweet. 

Thank you for sharing your story, Elizabeth

--------------------------------
Date: Sun, 3 Apr 2005 18:01:58 EDT
From: Elizabeth Parcells
Subject: Re:

4/3/2005 12:44:22 PM EST, micro1@ writes: Hi again all, Can anyone tell me if I can ask my GP for some tranquillizer to help me through the next few days and weeks???

Is it on to take something to help me or is it not advisable. 

Johann J N


HI again Johann

Sounds like a good idea if your doctor approves.  I was given Ativan, they said it was for nausea and stress on the body.  Only it said "anti-anxiety" on the bottle...  Slept like a baby! Later I found I didn't really need it. 

I hope you begin to feel better soon.  Elizabeth

---------------------------
Date: Wed, 6 Apr 2005 20:38:55 EDT
From: Elizabeth Parcells
Subject: Re: to Johann J
X-To: micro1@

4/4/2005 3:11:01 AM EST, micro1@ writes:  Of course eventually I will not have a choice, but facing them with this news, will tear me apart.  They have never done anything to deserve this much hurt and pain that I will now cause them. 


Dear Johann,

I am sorry that you are still feeling such strong emotions over your diagnosis.  No one "deserves" the things that happen in life, good or bad.  You can't blame yourself for this or feel responsible for the pain of others.  You have not "caused" any of this. 

Fear is the enemy.  Information and knowledge prepare you for a fight to win. 

You need to find out soon your exact diagnosis and the stage of disease you have.  It sounds to me like you are anticipating the worst case scenario and that you are experiencing more fear than need be at this point.  "Hope for the best" sounds like a platitude, but that is what you must always do in this situation. 

You only need to tell your family what you actually know, not what you fear. 

It is easy to let your mind jump to conclusions when faced with uncertainty.  The doctor has told you that you have an illness, but does not know yet how serious.  The cancer word has you scared s**tless, (literally!) and you automatically think the worst.  That is a trap of the mind.  Waiting for results of scans and biopsies is a test of your patience and calm.  But face your fear, because the more you know, the more fearlessly you can fight. 

The good news is, the disease is caught and will be treated. 

"Good news, everybody! My cancer is in treatment and chances are, I will stay healthy for years to come! Thank God we didn't miss it!" Put like that, it sounds like you should throw a party! You can avoid causing your family undue pain by taking the high road of optimism when you break the news. 

I have cancer.  There are plenty of negative emotions that go along with that.  It is a difficult time.  Yes.  No doubt.  It is also a time of introspection, priority setting and a time to choose happiness and hope over despair. 

I wish you well, Elizabeth

---------------------------
Date: Thu, 14 Apr 2005 10:36:35 EDT
From: Elizabeth Parcells
Subject: Get in the Boat - Therasphere treatment in Chicago

Dear List Friends,

This is Elizabeth reporting to you on my TheraSphere treatment experience so far.  I was evaluated on Tuesday and am back home today.  This will interest any of you who are looking for targeted treatment of liver cancer or of metastatic disease to the liver where surgery to the liver is not an option. 

Turns out, Northwestern Memorial Hospital (NMH) in downtown Chicago is the only location in the US where TheraSphere treatment is offered to patients with unresectable metastatic liver disease.  The FDA has approved it only for use in primary liver cancer.  I am being offered this treatment "off-label" as part of a study being conducted at NMH.  The title of the study is:

NU 1365-002: A Humanitarian Device Exemption Use Protocol of TheraSphere(R) for Treatment of Unresectable Metastatic Cancer to the Liver. 

I quote (paraphrase)* from portions of the study protocol and consent which I signed before being evaluated:

*Therasphere is a "device" consisting of microscopic glass beads that contain a radioactive substance called yttrium-90 (Y-90).  The TheraSphere are injected into the artery of the liver that supplies blood to the tumor(s).  As they flow to the tumors, they are not able to pass through and become trapped and release Y-90 to deliver a large local dose of radiation to the tumors. 

*This device is classified by the Food and Drug Administration (FDA) as a Humanitarian Use Device (HUD).  A HUD is a device used to diagnose or treat a disease or condition that affects fewer than 4,000 individuals in the United States per year and for which no similar device is available.  The FDA approves the use of a HUD based primarily on evidence that it does not pose a significant risk of injury to the patient.  Also that the potential benefit of the device to the health of the patient outweighs the risks of its use.  Participation in this study does not involve investigational or research procedures.  This device is approved by the FDA. 

Principal investigator is Dr.  Riad Salem, MD, MBA and the supporting institution is Northwestern University. 

So far so good. 

As the title suggests, the good doctor has to apply for permission from the FDA to perform this procedure on each study patient.  This is extra paperwork for the hospital.  However, the research nurse, Patricia A.  Gowland, who spoke to me before the evaluation, was extremely glad to see me and thanked me for making the extra effort to find them and for coming all the way from Detroit to participate.  She pointed out that all of their study patients were intelligent, well educated self starters like myself who took the extra trouble to seek out this type of treatment study.  I remarked that indeed, they sure didn't drop many bread crumbs for prospective patients to find.  I have searched for many months for a treatment opportunity like this, combing the Internet and asking and asking.  I don't understand why this particular light is under such a bushel!

One by one I met the team of doctors and nurses who would be working with me.  They are all very competent and friendly.  Everything went smoothly and near painlessly too.  It was a full day starting at 8:00AM with checking in, consultation, then the angiogram work in the OR, which I followed on the monitor screen with great interest.  The catheter was inserted into the artery at the groin and was guided up to the liver.  Contrast was released into the various tributaries that go into the liver and surrounding organs and images made of each.  At last, the radioactive tracer substance called TechneScan(R) MAA was injected.  Surgery over with, I was transported directly up to nuclear medicine for a scan to observe where the MAA tracers had traveled, making sure they did not go anywhere but the liver.  A CT scan finished my day and I was back at the hotel by 5 PM.  The following day I had a PET scan as well. 

When I talked to Dr.  Salem after the liver angiogram, he was happy and optimistic, saying there was good blood supply to the tumors meaning that the Theraspheres would be very effective.  (Hmm, ten months of Avastin had not phased the blood vessels in my liver apparently!) He confirmed that actual treatment will be given this coming week Tuesday.  So I will be driving back to Chicago for that, with more optimism than I have felt since this whole thing began!

Dr. Salem also confirms that my treatment goal of reducing liver tumor load and relieving the liver pain that has worsened, is more than realistic.  Again, not a cure, but a big step in the right direction.  Healing I think we call it. 

So, if any of you are looking for this type of treatment, you can write an email to Dr.  Salem's Physician Assistant:

ACourtney@nmff.org Angi Courtney, PA-C (312) 926-5343

Karen Barrett is Dr.  Salem's nurse and she will be an additional contact person for you. 

Karen Barrett, RN 676 N. St. Clair, Suite 800 Department of Radiology Chicago, IL 60611 (312) 695-1791 phone

These ladies are very good responders and very friendly.  They will let you know what you need to do to apply for the study and become eligible for treatment. 

In the Bible it says, "Ask and you shall receive." But ya gotta ask loudly!

Good luck to all of you, I hope this information is of use to you. 

Elizabeth Parcells

----------------------------------
Date: Thu, 14 Apr 2005 12:43:39 EDT
From: Elizabeth Parcells
Subject: Re: Get in the Boat - Therasphere treatment in Chicago

4/14/2005 12:38:17 PM EST, curecancerfirst@ writes:  I can feel the glow in you post, wonderful news.  You didn't mention an HAI pump, did you already have one, or is one to be used at all?

Michael

Hi,

Nope, no HAI pump is to be used.  Those are used to deliver chemo therapy directly to the liver over time.  The TheraSpheres are injected into the liver in a matter of minutes during the procedure itself.  I have never used an HAI pump, since my doctor has preferred to rely on systemic treatments so far.  It was my own initiative and decision to choose this targeted treatment for the liver because of increasing pain of late. 

Yes, I am optimistic!

Elizabeth

------------------------------
Date: Thu, 14 Apr 2005 15:47:13 EDT
From: Elizabeth Parcells
Subject: Re: sort of off topic...

4/14/2005 1:38:05 PM EST, rbeckler@ writes: Okay, so am I having fun yet?  For starters, back in January, my oldest son comes home with an abandoned Beagle.  She wasn't house trained, had worms, ear infections and a belly full of puppies.  But she's sooo cute and only about a year old. 

The pups are now about 7 weeks old and pooping like there's no tomorrow.  Since Lucy, the mother, can't be trusted in the house, they're all penned up in the mud room.  Every morning it's a disaster area.  You can't clean it with the puppies in there because all they want to do is play.  Of course, that means play using those same feet that have been mashing the poop into the floor all night.  I've got to let them out on the deck but now they've learned to climb stairs so I spend half my morning chasing puppies around the yard and back in the field. 

Meanwhile, Lucy's in the house.  My wife (who has no love for Lucy) is away on business.  Lucy heads right upstairs and pees on my pillow.  Gee, thanks Lucy. 

So, I've got two choices.  Toss the pillow and explain to my wife who will want to shoot the dog, or just wash it.  I've washed pillows before, no problem.  So, I take it downstairs, give it about 5-6 rinses in a bucket and toss it in the wash. 

It breaks open.   In the washer.   It's a feather pillow. 

Now I've got to toss the pillow, clean out the washer, clear the feathers out of the drains and hope the drain field's not already clogged up with feathers. 

But here I am counting my blessings.  It's been two years now since I finished chemo.  What's a few feathers?

Ray Age 50, Stage II, T3N0M0, sigmoid resection 8-20-02, six months 5fu/leuc ended April 2003.  Currently NED


Hello Ray,

You remind us how important the little things are in life, and never to make little things into big things.  With priorities straight and the right perspective, the march thru life becomes a joy and never a chore. 

Keep your days bright with happiness,

Elizabeth

---------------------------
Date: Fri, 15 Apr 2005 21:08:15 EDT
From: Elizabeth Parcells
Subject: Re: Get in the Boat - Therasphere treatment in Chicago

4/15/2005 11:12:15 AM EST, ssbrett@ writes: Elizabeth:   am so pleased that that the evaluation went well and that you are a good candidate for the treatment. 
Regards,  Sandy


Thanks Sandy, I am hoping for the best.  I will keep reporting on this. 

Elizabeth

---------------------------------
Date: Fri, 15 Apr 2005 23:48:19 EDT
From: Elizabeth Parcells
Subject: Re: Is the glass half-empty?

4/15/2005 12:40:05 PM EST, Mooncrazy@ writes: Norma,

I'm not looking forward to my sister's PET just because of the high rate of false positives I've heard about.  The radiologist has thought on 3 occasions that I had stuff that was suggestive for cancer and so far he's batting 0.  Hang in there. 

Randi

Hi,

I had my first PET this week and will see the report when I go to Chicago again on Tuesday.  I am glad to know that this scan is up for interpretation and not everything on it is "hard evidence" of new cancers in all cases.  I will keep an open mind when I see the report and not to go crazy if I lit up like a Christmas tree. 

Since scans are really done to help make treatment decisions, there may be such a thing as Too Much Information (TMI). 

My PET scan was done in keeping with the study protocol for the Therasphere treatment I will be receiving, to give some baseline values for the researchers.  This information won't influence my treatment decisions since I already know about my mets.  I wonder if I should see the PET report at all...  but I am sure my curiosity will get the better of me!

Elizabeth

--------------------------------
Date: Sat, 16 Apr 2005 11:18:49 EDT
From: Elizabeth Parcells 
Subject: Re: Is the glass half-empty?

4/16/2005 10:46:59 AM EST, Mooncrazy@ writes: Elizabeth,

I think you need to see all your reports if you are making the decisions.  My sister is leaving everything up to me regarding treatment , or so she thinks, and we are going to the hospital Monday to get her pathology reports and all radiology reports.  We are assuming the Pet Scan will be ok and are making appointments with a thoracic surgeon and an interventional radiologist to go over options.  We want to be as proactive as you have been and find the best treatments.  You have to have all of the facts to do that. 

Randi

Hi Randi,

Of course you are right!  Give it all you've got!!

Elizabeth

-------------------------------------
Date: Thu, 21 Apr 2005 17:11:47 EDT
From: Elizabeth Parcells
Subject: Re: Update on Bella

4/21/2005 1:59:35 PM EST, harryrezz@ writes:  We have our fingers crossed that the improvement will continue.  A month ago our doc said that if the Erbitux was effective she might have two to three months, and if not maybe a month.  We like him a lot and trust his judgement in most matters, but we're out to prove him wrong on his prognosis.  Wish us luck! Harry, Stage III R/C, dxed 4/04, last chemo 1/05; husband and caregiver to Bella, Stage IV C/C, dxed 5/04; stepfather to Bill, age 36, Stage III R/C, dxed 1/05. 


Dear Harry and Bella and Bill,

It is wonderful to hear that Bella has improved since last we heard.  That is one thing we worry about, sometimes it seems like we will never get better again, and then we DO! Not only surprising the doctors, but ourselves too! Bella is a real fighter, and I admire her. 

I don't even ask the "how long" question anymore.  My doctors are happy to leave that question unasked.  I am on my own schedule and no one can accurately predict the "when." Focus on the future, focus on now. 

Thank you for sharing this good news of Bella's improvement, it is very inspiring. 

Love, Elizabeth

------------------------------
Date: Fri, 22 Apr 2005 14:56:42 EDT
From: Elizabeth Parcells
Subject: Re: Good News Revisited

4/22/2005 1:34:49 PM EST, suewarner16@ writes:  Regarding good news.  Has anyone experienced a recovered cancer patient or someone who belives they are recovered doing their old stuff, but 10x more extreme. 


Dear Susan,

Funny thing you should ask...  Your daughter seems to have experienced the epiphany that comes to some people who have had a "brush with death." She has turned her negative experience into very positive energy in her life.  Her actions are consistent with the values she has always held, but the "more so" comes of realizing she has been procrastinating and putting off things she wanted to accomplish with her life.  She is in a hurry to make up for "lost time." This is actually a very good reaction.  I think you will find a number of people on this list who have reacted the same way. 

I had childhood cancer diagnosed when I was 22 months old in 1953.  I was given a 10% chance of surviving, prognosis poor.  With what was then experimental radiation therapy, ten cobalt treatments in one month, my tumor began to shrink.  I was closely watched until I was nine years old, when another exploratory surgery was performed.  The tumor had gone benign and could now be removed safely.  I was cured.  Nothing short of a miracle, they said. 

The "miracle" was not shared with me until I was twenty, the C word being taboo.  I had always know there was something wrong or different about me, since the cobalt had damaged me severely.  But no one shared the bad news/good news with me.  Things would be quite different today, I'm sure, in our open book society. 

When I did figure it all out, I had the overwhelming idea that I should do something very meaningful with my life, something outstanding and wonderful.  I knew I would never have children so homemaking was not to be my path.  I worked very hard on the one unusual talent I possessed and became a singer, and a pretty good one at that! Living on the edge as a cancer survivor, I devoted my career and all my energy to my singing.  I had always wanted to sing, but my drive and ambition were far greater than my rather shy personality would have indicated, and people were forever underestimating me.  But my "more so" made me want to be more than anyone expected.  I struck the word "normal" from my vocabulary and surprised the people again and again. 

Now, after a very interesting life and career in music, I am 53, have stage IV colon cancer and am looking back on my life as a survivor.  I am glad I have this time of reflection to understand it all.  True to my pattern up to now, I am trying to be more than expected, to live longer, be healthier and stronger than my chart would indicate.  In this crazy race against cancer, the object is to reach the finish line as late as possible, and if necessary, be dragged over it kicking and still fighting. 

So the "brush with death" thing can be a powerful motivator to do something good and meaningful with your life.  Adversity really can bring out the best in a person.  That's what I call looking on the bright side. 

Elizabeth

-----------------------------
Date: Mon, 25 Apr 2005 15:36:19 EDT
From: Elizabeth Parcells
Subject: Song without Words


4/25/2005 5:06:42 AM EST, strongsgifts@ writes:  The hardest thing right now for me is that there are many people who I considered friends of ours over the years that have not even contacted me to express their concern.  No card, nothing.  That really hurts.  A mutual friend of some of them told me that they wanted to see me but didn't know what to say to me. 

Hi Sheila and list friends,

I was struck by this comment about the difficulty people have communicating their concern when tragedy strikes.  I think all of us have felt this type of isolation.  It disappoints us that even our friends and family are at such a loss for words that they end up saying nothing at all.  And it does hurt. 

Perhaps a little guide book on what to say when there is nothing to say would help out in this situation.  We recently had a thread on "What do we tell the patient." This thread could be called, "Words that Comfort."

I find that most people react to bad news by trying to say something encouraging.  Often their well intentioned comments backfire because they set aside or gloss over what they have just learned.  They might try to say, "But cancer is so much more curable these days, isn't it?" or "If anyone can beat it, YOU can." All they needed to say in most cases is, "I am so sorry.  Is there anything I can do for you?" When appropriate, a nice hug is very comforting too. 

Being in the company of the grieving can feel terribly awkward for many people and so they simply avoid it.  If these folks had a little arsenal of comforting words they could rely on, they might be less afraid to confront the situation.  Again the old stand-by, "I am so sorry, is there anything I can do?" is never misplaced. 

The bottom line to saying the right thing:

Acknowledge the grief, bad news.  (Denial is not comforting.) Be sincere in your helpfulness, show support and love.  Be willing to listen. 

The other side of the coin, of course, lies with ourselves, the afflicted.  We may as well accept the fact that we will need to reach out and break the ice with the people who have been avoiding us if we don't want to continue to be isolated from them.  We may well have to reestablish contact with them ourselves.  By doing so, a tense situation that will only worsen with time can be resolved.  The friends and family you reach out to will be relieved and glad that you let them "off the hook."

As a patient with advanced cancer (the polite word for terminal) I felt a strong urge to reach out to as many old friends and family as I could.  It paid off wonderfully in waves of support and love from them.  My campaign culminated in my trip to NY in February to sing at Carnegie.  It gave me a tremendous lift to see so many friends, some I had gone to school with thirty years ago and had not seen since! What a great reunion it was!

I could burst into song at this point, something about lighting just one little candle...  but I won't.  (Whew!) We have all learned from our experiences how rare and precious those people are who step right up and do and say just the right thing for us in times of trouble.  Most of us are far from perfect in this regard. 

The moment you begin to feel lonesome and isolated and you want your friends to be around you, invite them back into your life.  Set the tone and let them come in.  And if they don't know what to say, never mind.  Sometimes Life is just a Song without Words. 

Thanks for listening, Elizabeth

--------------------------------
Date: Thu, 28 Apr 2005 18:46:13 EDT
From: Elizabeth Parcells
Subject: Get in the boat - Therasphere continued

Hello all,

This is Elizabeth reporting back to you on my experience with the TheraSphere treatment so far.  You may recall: TheraSphere (R) is an FDA approved device for targeted radiation treatment to the liver.  (Another company produces a similar product called SirSpheres.) So far, the FDA approves it's use on primary liver tumors.  But I have joined a study at Northwestern Memorial Hospital in Chicago with Dr.  Salem to evaluate its use on metastatic liver disease.  The hope is that the FDA will approve a broader use of TheraSphere to help more patients.   TheraSphere website

My case: CC dx July 2003 at stage IV with mets to liver and pelvic area.  Surgery, permanent colostomy, chemo FOLFOX as first line, then 5FU and Leucovorin plus Avastin, lately, camptosar alone.  No progression apparent until March 2005 when lung mets were noticed and the liver tumors began increasing in size.  Last few months, increasing liver pain and increasing bone pain in the right chest wall. 

I have been down to Chicago twice now.  The first trip was for evaluation on April 11.  My sister drove me in her van with an air mattress in back for me to lie on as I can't sit in the car for that long.  We stayed at the Wyndham Chicago which is steps away from the entrance to the hospital, very convenient.  And they offer patients of the hospital a nice discount!

The day at the hospital began with signing in and getting the paperwork done, filling out forms with redundant info that I like to call the "Patient Literacy Test." We met the nurses and the doctor briefly.  The team is young and energetic and very capable.  Then I prepped for the procedures of the day: a liver angiogram, imaging the angiogram, installing "coils" in veins to contain the spheres, and finally the release of tracer TheraSphere.  The procedures were long but virtually painless.  Immediately following this, I was wheeled up to nuclear medicine for a scan to see where the tracers had gone to.  After this, a CT scan.  By the time all this was over and I was released, it was 5PM.  The following day I had a PET scan to finish the evaluation phase. 

One week later, on April 19, we were back for the actual treatment.  The doctor told us that the scans and tests were all very good and showed that I was a good candidate for the treatment to the right lobe of the liver where the two large tumors are.  He said I could expect good results from the treatment to reduce the size of these tumors and to relieve pain.  The actual procedure was fairly brief, since all they needed to do was access the artery as before, bring the catheter up to the liver and then release the TheraSpheres.  I was discharged with instructions and a few prescriptions. 

Again the procedure itself was painless.  I did have some nausea the first several hours afterwards.  Also fatigue is an issue.  The past week has been tough.  For some reason my stomach decided to act up and I was unable to take my pain med for three days.  I called the nurse in Chicago and asked if this type of reaction was expected after treatment.  She said no, but that I might have some unrelated GI problem going on and suggested I take anti-nausea meds for it.  The tummy upset lasted about two days, but now I feel all right again.  But the treatment itself seems to have caused me no severe problems at all. 

On May 17 I will be back for my 30 day evaluation and will be able to report to you on my progress.  The hope is that the liver pain will be less and the tumors significantly smaller.  I'm crossing my fingers!

Hopeful, Elizabeth

PS The PET scan lit up an area in the right chest wall that is "suspicious" and may explain the pain I have been having in that specific area.  This is a separate problem from the liver, and I will address it with my oncologist tomorrow morning.  I'm told that local radiation can relieve pain from bone lesions, so if that is what this is, that is what I hope to do for it.  So with this darned metastatic cancer, it seems like you are constantly putting out fires!

----------------------------
Date: Thu, 28 Apr 2005 23:18:21 EDT
From: Elizabeth Parcells
Subject: Re: Hippee - CT scan results

4/28/2005 10:47:31 PM EST, Superdee565@ writes:  I love to laugh and know that I am screwing up my oncologist's statistics by surviving so long!!! And he only gave me 18-24 months.  HA-HA to him!!!

Dagny


Hi Dagny,

So great to hear you have been progressionless since the start.  I too was DX in 2003 and am still doing okay! Statistics being what they are, it is fun to show the doctors what those gloomy numbers really mean to the individual.  Like, not much.  I was told that the median survival at diagnosis with liver mets was about 15 months.  Without treatment, I was expected to live a year or less.  With treatment, no one could say.  Still, here I am at the 22 month mark, in treatment and fighting.  Each day is a gift. 

The "how long" thing bothers me from several angles.  The doctor really cannot know if his "prognosis" is accurate for the individual patient and the patient tends to think the doctor must know or he would not mention it.  I felt like I had been kicked in the stomach when I was told, a year, maybe less.  I am glad that I did not sink into despair, but decided to fight.  The battle of hopelessness vs.  hopefulness could commence. 

Learning to hope for the right things keeps me going.  I have never asked the doctor the "how long" question again and don't intend to.  Each of us is unique and each of us has a destiny to fulfill.  No doctor on earth can tell you what your destiny is. 

Congratulations on a nice and boring, unchanged CT scan.  I am laughing with you, HAHA!

Elizabeth

------------------------------
Date: Fri, 29 Apr 2005 18:09:34 EDT
From: Elizabeth Parcells
Subject: Re: Get in the boat - Therasphere continued

4/29/2005 5:12:23 PM EST, suewarner16@ writes:
Elizabeth,
Are your liver mets in both lobes? Do you only have two?

Thanks, Susan

Hi Susan,

Actually I have multiple lesions in both lobes as well as extra hepatic disease.  The two largest ones are in the right lobe which were treated.  Obviously this does not in any way treat the lung or pelvic mets, I just hope that reducing tumor load to the liver will help my overall picture.  I want to last longer and feel better. 

Elizabeth

--------------------------------
Date: Tue, 10 May 2005 23:02:30 EDT
From: Elizabeth Parcells
Subject: Bad News ...  Good News

Hello Friends,

The past three weeks have been harrowing and interesting for me.  First, the bad news: I have been having terrible pain from my right ribcage area.  It was very worrisome since a PET scan in April had indicated "suspicious" new stuff in that area.  We were concerned about possible chest wall or bone lesions.  And the pain was getting worse day by day.  It got so I could not sit or stand for more than 10 minutes without serious pain and even lying down at night I could not get settled or sleep.  It was very upsetting to have so much pain and to be so unsure what was causing it. 

The Doctor prescribed Darvon, which seemed to work for a short time.  Then we moved up to Vicodin, and finally graduated to Morphine.  The pain was hardly manageable and I began to have bad constipation and vomiting from the meds.  Very disheartened, I finally had to fast and purge my system for three days to avoid becoming blocked up altogether.  Misery and fear began to overtake me. 

Now for the GOOD news! Last week, upon further scanning with conventional X-ray to and detailed bone scans, it was determined that there were no new lesions in that area at all.  What I had was merely a broken sixth rib!!

WHEW! Funny when you realize that having a broken bone can actually be a good thing compared with what you had feared! So, smiling thru the pain, I began anew to manage my pain with the morphine and an aggressive anti-constipation regimen.  I had not realized how deeply the stress of unexplained pain with suspicions of cancer progression had burdened my mind.  Between the pain and the morphine, I had even been unable to check my email and read through all the posts!

How did I break a large rib bone, you are asking? Well, I was not out jumping my Lipizaner stallions.  I have a preexisting parathyroid condition that causes bone loss.  So the ribs are more brittle now and heal more slowly.  One good cough could have caused it.  I am now on Zometa to help my bones retain minerals. 

So now I am thinking hard about pain management, fear management and the irony of life, all topics upon which I could (and probably will) expand in the future. 

Now that I feel better, I have read with interest the 150 posts I had been missing the last few weeks.  So I acknowledge all those belatedly now.  I am still learning from all of you and empathizing with your stories. 

So that's my little story.  On May 17, I will be in Chicago for follow-up evaluation on my TheraSphere treatment to the liver.  I am hopeful that I will have nothing but GOOD news to report after that.  This very promising treatment will improve my overall picture and maybe even grant me some quality survival time.  DARN that broken rib, or I would be feeling pretty good these days!! But thank the Lord that's all it turned out to be. 

Be well and at peace, Elizabeth (CC Stage IV dx 7/2003)

-------------------------------
Date: Wed, 11 May 2005 14:35:07 EDT
From: Elizabeth Parcells
Subject: Re: Bad News ...  Good News


5/11/2005 10:55:29 AM EST, rbeckler@ writes:  As I was reading your post, I immediately thought, "broken rib".  I broke one once during a coughing fit from pneumonia.  Very, very painful!

Had I experienced that pain after being diagnosed with cancer, a broken rib would have never entered my mind.  I'd have immediately thought the worst.  I guess that's just the way we are. 

Hello Ray,

You are right, it is hard not to think the worst when you are hurting like Hades.  The PET scan lighting up like that did not help my state of mind much either. 

There is a lesson here: Just because you have cancer, doesn't mean you can ignore all your other health issues.  We tend to dwell on the cancer and neglect other possibilities. 

My oncologist likes to complain that all the doctors blame his chemo for everything that happens to a patient.  And yet, a false diagnosis can mean that a problem will not be appropriately treated, as in my case.  I went without the requisite pain management while they "ruled out" cancer spread. 

So, at the moment, I am managing.  Pain is reduced to tolerable.  Now it's the issues caused by the Morphine that are getting me down.  If it ain't one thing, it's another!

Sorry you broke your rib, Ray, hope the pain is forgotten now. 

Elizabeth

-------------------------------
Date: Wed, 11 May 2005 15:01:59 EDT
From: Elizabeth Parcells
Subject: Re: broken ribs... 


5/11/2005 12:06:23 PM EST, shamchak1@ writes:  During our adolescence, we often indulged into some dangerous games.  A particular one I remember is, we used to lie on the stomach, and another boy (almost full grown) stands on the back, and slowly moving and thus massaging by his feet.  This was considered very manly, since you prove that, you are strong enough not to get your your bones broken.  Must be the strong sunlight had given us really strong bones .... 

I shiver often when I remember these pranks nowadays, and when I read people get their bones broken even from cough or laughing ... 

Shyam


Hi Shyam,

Turns out it isn't that hard to break a rib.  I broke one while rehearsing on stage for an operetta in Basel years ago when a colleague (not the sharpest pencil in the box) took a flying leap and landed on top of me as I lay on my stomach sprawled over some steps.  OOOOUUUUUUCH!!!!!

But I was younger then and healed quickly.  As a youngster, we rode horses and climbed trees, played hard.  I grew up with three brothers, need I say more.  Until very recently I was still pretty active and felt strong.  It has been a major identity change for me to accept these new limitations. 

Ah well, more time to write and be with my family is not so bad.  I was often homesick during my years abroad, so I don't complain about being a homebody now, I appreciate it. 

Here's to Freedom from Pain and Quality of Life! Elizabeth

-----------------------------------
Date: Fri, 13 May 2005 13:26:43 EDT
From: Elizabeth Parcells
Subject: Re: repeating oxyliplatin?

Hi,

I was given Oxalyplatin with 5FU and Leucovorin (FOLFOX) as first line treatment starting October 2003 for ten months.  I tolerated it moderately well with cold sensitivity and neuropathy becoming issues as time passed.  Finally, the treatment caused severe itching on my back and feet while being infused, so that Benedryl had to be given by IV right away.  So the Oxaliplatin was stopped and I continued on with 5FU and Leucovorin and added Avastin. 

At that time the doctor mentioned the possibility of returning to the Oxaliplatin later on, since we had seen good results with it, at least no progression.  I took the Avastin for several months but stopped chemo in January 2005 in preparation for a concert trip to New York.  I began to notice more pain from the liver and my CT scan in March showed progression of liver and lung mets.  The doctor wanted to continue with Camptosar alone, but I chose to seek treatment with TheraSpheres in a study at NWM Hospital in Chicago.  April 19, 2005, I received TheraSphere treatment to the right lobe of the liver, after which the liver pain has been much reduced. 

Soon we will discuss resumption of Chemo treatments.  As great as the TheraSphere are, I do have other mets to worry about in the lungs and pelvis.  We will probably go with Camptosar, but I may also revisit the Oxaliplatin issue since it worked well last go-round. 

It may not be appropriate for every patient to repeat a treatment, but the question is certainly valid. 

Elizabeth

------------------------------------
Date: Mon, 16 May 2005 11:42:46 EDT
From: Elizabeth Parcells 
Subject: Re: TheraSpheres ??

5/14/2005 9:55:57 AM EST, dbeatty213@ writes:  I would like more information on this treatment.  My husband has done all the other treatments (diagnosed Jan 02) but now has larger tumors in both liver (11.5 cm) and lung (4 cm) as well as new tumors in the cervical and thoracic spine and pelvis.  They took him off the Camptozar and Avastin and are considering putting him back on Camptozar and Erbitux after the radiation.  His CEA went from 708 to 1387 in two months and his pain has increased greatly.  He will not take Oxilipalatin again as the side effects from 2003 are still causing most of his pain.  What does the ThereSpheres regiment involve? Diana

Hi Diana,

this very day I leave for Chicago for my follow up evaluation on the therasphere treatment I received 30 days ago.  If you check the archive for my previous posts you will find my other posts on this topic.  Keep in mind that this treatment is solely for the liver tumors, not the others located in lung or elsewhere

What is involved in getting this treatment is to be accepted for it by a team such as the one at Norhtwestern Memorial Hospital under Dr.  Raid Salem.  Dr.  Salem is conducting a study in hopes of getting TheraSphere treatment approved for secondary liver mets by the FDA.  Your liver tumors must be considered inoperable to qualify for treatment. 

Ask your doctor to refer you.  Contact Angi Courtney who is Dr.  Salem's assistant by email at _acourtney@nmff.org_ (mailto:acourtney@nmff.org) with your request to be considered for treatment.  She will advise you to submit your medical records and latest CT scans (which you can have put on a CD rom for them). 

The team at NMW is excellent.  However, this may be too great a distance, so see if you can find other centers that offer this treatment "off label" "compassionate".  I would consider the Chicago team worth the journey if you are accepted. 

Well, I'm off to Chicago now, motor's running and I need to get started.  I hope to return with good news similar to Suzanne's and will report back to the list asap. 

Good luck to you, Elizabeth

--------------------------------
Date: Fri, 20 May 2005 12:07:15 EDT
From: Elizabeth Parcells
Subject: Re: TheraSpheres ??

Hello Kathy,

Sorry I'm late responding to you.  I've been busy "putting out fires" so to speak.  Let me answer your questions as you have put them to me:

5/17/2005 4:40:23 PM EST, Reggie74@ writes:  I have been following your posts, and hope your follow up went well and brought good news!

Thank you, yes.  Dr.  Salem is pleased with my progress and says the liver tumors are already markedly reduced.  I took this latest CT scan home with me on CD ROM for my Oncologist at Ford to look at and he too is impressed.  I am glad because my liver pain has disappeared.  I was having a lot of muscle pain in neck shoulders and back.  I am very glad I had this opportunity. 

My husband is stage 4 (10/03) with mets to liver and lungs and has been on all conventional therapies without improvement.  To compare my case with his, I was diagnosed 7/03 stage IV with mets to liver and pelvic area.  Lung mets have developed since then.  I have been thru standard first line and second line treatments which have only served to halt progression temporarily. 

I have a few questions about the Theraspheres, is the treatment plan at Northwestern a research protocol? Because I talked with the nurse at the Liver Cancer Center in Pittsburgh that is also doing the Sir Spheres and she said it was not covered by insurance if you have mets outside the liver, theirs is not a protocol for colon cancer patients it is just for liver cancer.  It is true that this type of treatment has been FDA approved only for primary liver cancer to date.  The Northwestern protocol is a study.  Dr.  Salem heads the study and must ask FDA for permission to perform the procedure on each of his off label patients.  He is very pro-active on this and believes strongly that this treatment should be approved for a broader group of patients.  My insurance was billed but it seems that my Blue Cross will cover it.  Angi Courtney at Northwestern could answer this question better than I for specific plans. 

I thought you had mets in your lungs as well, correct? So was yours covered under a protocol? Did they bill your insurance, if they did, did you have problems getting it covered? Are they treating you with anything systemically for the lung mets? Or do they plan on after a certain time? Yes I do have mets beyond the liver, but this was not a hindrance to my participation.  Note that this treatment is only for the liver and does not affect any other areas or mets.  You will have to continue to treat your cancer systemically.  But getting the liver tumor load reduced certainly improves the overall picture and may even help prolong life.  That is my hope.  Chemo can be continued as soon as two weeks following the treatment. 

Thanks, Kathy wife of David

You are most welcome, Elizabeth

----------------------------------------
Date: Fri, 27 May 2005 18:08:34 EDT
From: Elizabeth Parcells
Subject: Sidewinder - tough to diagnose!

Dear friends on the list,

Some strange goings on with my case that raise several questions.  First, the reason I have been so quiet lately is because I was in bed with level 9 pain in my right rib/chest area.  This pain was different than the liver pain I had over the past year and the pain caused by a broken rib since March.  This pain kept increasing over the past four weeks especially until I was literally bedridden and unable to do anything for myself. 

While in Chicago for Therasphere treatment I was carefully evaluated with a CT liver scan and a full PET scan on April 9.  It was my first PET, by the way.  That PET lit up some "suspicious" cells in the right chest wall which the radiologist believed to be cancer cell deposits, notwithstanding the inflammation caused by the bone break nearby.  However the Detroit team did not concur with this opinion.  They began to treat me for pain only with Darvon (not strong enough), Vicodin (tolerated dose too weak) and liquid Morphine (a real colon stopper causing constipation and stomach upset along with nausea and vomiting).  I was begging for mercy, somebody please stop this horrible pain and stop making me so sick to my stomach!

On my return to Chicago for the 30 day follow-up exam on May 17, I was in such distress that I had to be put on a stretcher and transported around the hospital like an in-patient.  I barely tolerated the CT and PET scans and became very sick from the contrasts and could hardly stand the pain of lying on the flat tables.  It's not at all like me to weep in public. 

Dr.  Salem, bless his soul, saw me and was shocked at my condition.  He took immediate action making sure I was properly hydrated and treated before my long drive home, which I spent on an air mattress in the back of my sister's van.  He also called Detroit and gave them a good talking to.  The day after my return I was at the hospital for more hydration and hoping to find a suitable answer to my problems.  However the Detroit team was still unconvinced of a new cancer issue and prescribed another pain killer, this time a synthetic morphine called Oxicodon.  For a day or two I was a little better, but the evil cycle soon resumed with constipation, cramps and vomiting. 

That is when I finally got angry.  No more of this! What pain is this so great that nothing helps it? A broken rib? PAH! I don't think so.  We got on the horn to the hospital and insisted I be seen by a radiologist PRONTO who could read all my scans and come up with something for the pain.  At last, I saw the radiologist who had been reading my scans from the beginning, but who had never actually seen or met me.  After talking with me and my sister for awhile, he went back to the drawing board, that is earlier scans before the break and compared with the latest ones from Chicago which I had brought with me on CD ROM. 

Suddenly he had a positive diagnosis: a tumor forming on my chest wall on the right side which he was able to localize and measure with diagnostic CT scan.  45 minutes later I was being treated with appropriate radiation. 

The following morning I woke up from a nights sleep nearly free of pain!! You can't imagine my relief and gratitude! Far from feeling badly about this new cancer progression, I was glad that the root of the pain had finally been nailed and treated.  I will have a total of five radiation treatments and should feel much better for it.  I am exhausted and worn down from weeks of sever pain, forced bed-rest, semi-starvation and attacks on my system. 

My questions now range from effective pain management without morphine, how to identify new problems and get faster reactions to them, how to make sure my medical team does not give up on me and keep myself from despairing when the going gets tough?

Sorry to write such a lengthy saga, but perhaps there is courage and help in shared experiences.  I have such regard and respect for everyone here on the list that I feel able to share with you like true friends. 

Your, Elizabeth

----------------------------------
Date: Fri, 27 May 2005 18:48:16 EDT
From: Elizabeth Parcells
Subject: Re: Sidewinder - theraspheres

5/27/2005 6:39:33 P.M. EST, jaybyrd1@ writes:  Have you learned of your response to the Theresphere treatment yet?
Carl

Hi Carl,

Yes, the therasphere treatment seems to have made a significant impact on the liver mets.  The Doctor was very satisfied with the results.  Future scans will show the progress, but I can already say, the liver pain is down to near nothing.  That is progress!

Elizabeth

-------------------------------
Date: Sat, 28 May 2005 14:07:50 EDT
From: Elizabeth Parcells
Subject: Re: Sidewinder - theraspheres

5/28/2005 12:44:20 A.M. EST, jaybyrd1@ writes:  It seems that the Therasphere treatment is underutilized in the treatment of colon cancer.  I hope that you continue to improve and also that you continue with your wonderful writing here. 

Take Care, Carl

Hi Carl, I'm with you.  Dr. Salem is conducting his study at Northwestern Mem Hosp in Chicago to achieve FDA approval for the TheraSphere device use with secondary liver cancer, that is liver metastasis patients, a far broader group of patients than just the primary liver cancer group.  I support his activism and initiative all the way. 

Elizabeth

---------------------------
Date: Sun, 29 May 2005 09:12:16 EDT
From: Elizabeth Parcells
Subject: Re: shrinkage???


Hi Norma,

You can be happy with 20% because that is very good.  I took the FOLFOX and Avastin for close to a year but with only temporary halt to progression and no regression of tumors.  The chemo was only effective in slowing the cancer down in my case.  As already mentioned, the response to any of these chemo agents is very individual. 

I rejoice for you that it worked so well for Tony.  Celebrate any good news you can get. 

Elizabeth

---------------------------

Date: Sat, 4 Jun 2005 15:36:58 EDT
From: Elizabeth Parcells
Subject: Re: ASCO results 2005
X-To: katemm@

Dear Kate,

Thank you for your tireless efforts on our behalf.  Your report from the ASCO is so informative.  I am facing more decisions right now and it helps to know what's "out there" and what's not. 

I just spent several days in the hospital with a suspected embolism in my right lung, so I'm back in the Coumadin club.  Pain is now much better since radiation last week, liver is showing good values and reduced tumor load since therasphere treatments and the broken rib is healing.  I keep trying to put out these fires and get strong enough to resume chemo. 

Doc says Camptosar is next, since 5FU/Leuco and both Oxalyplatin and Avastin have ceased to be useful.  I don't know if the Camptosar will slow progression or not, so I am sorry to have to try it. 

After the misery of the past six weeks, the progression I've seen and the pain, it is easy to get discouraged.  All I want is to feel better.  Fighting is very hard. 

So the decision point I reach now is to treat or not to treat.  Still I can't help thinking it is too soon to give up on modern medicine.  (I could never give up on myself, it's just that my faith in the meds is shaken.)

I know that millions of fine brains are working on this problem day and night, that new meds and new approaches are being developed all the time.  Like you, I search for a sign that there is something new available that could improve things.  I also have no doubt that in the next ten years they will find something really significant to fight all cancers.  We get closer each day. 

Faith in the future could help face the challenges of the present.  Did I just give myself a pep-talk?

Elizabeth

-----------------------------
Date: Sat, 4 Jun 2005 17:02:58 EDT
From: Elizabeth Parcells
Subject: Anger - a patient speaks

Hello friends,

The ANGER thread sure got a rise out of you all! I read it all with fascination and some dismay.  Most of you were expressing the anger of friends, family and caregivers that can arise against the patient.  Though anger is a natural and understandable reaction to a catastrophe like colon cancer, it is also stressful and potentially destructive.  Fortunately, anger is a strong emotion that passes with time.  But feelings of regret and remorse can remain in its wake. 

"Preventable, Treatable, Beatable"

Upbeat and courageous words in our Colorectal Cancer slogan, imprinted on the blue bracelets, in large letters next to the star symbol, a promise and a warning to all. 

But those words also sear and burn me when I think that my own advanced cancer was "preventable, treatable, beatable." That slogan reminds me of my missed opportunity to prevent, treat and beat it. 

Angry with myself, all the what-if's and why-me's and if-only's torture me in the wee hours.  Look what I am putting my family thru, I won't grow old with my siblings or enjoy the pleasures of retirement, I will miss out on the future I could have had.  At fifty three I would have hoped for another thirty years of life AT LEAST! Why didn't I hear or heed the warnings?

What now? Can I go on kicking myself around the block? I have tried to warn others, passing out the blue bracelets and encouraging people to avoid my fate with a simple test.  Some have listened, been tested and have been rescued! But some members of my own family have refused to listen and that breaks my heart.  I get angry at THEM for not going in for their colonoscopy.  I could not bear to see it happen again in my family!

But my anger does not convince anyone to take action.  So I try a new approach.  I explain that I have made the fatal error and will die an untimely, avoidable and tragic death.  But if someone I speak to heeds my message and goes for the test because of me and is spared, that will be a pearl in my crown when I get to heaven. 

I have become an unwilling prophet, with a message very few want to hear.  No one could be angrier with me than I am with myself.  But if that anger is turned to energy for doing good, then it is good anger.  Channel the anger to good purpose and then you can indulge in as much anger as you like. 

Caregivers are defined as saints who take up the cross of another for love.  Angry? Hurt? In pain? Yes.  Doing what has to be done?? God bless you all. 

Elizabeth

----------------------------------
Date: Sat, 4 Jun 2005 17:36:40 EDT
From: Elizabeth Parcells
Subject: Re: Elizabeth, hope & anger

6/4/2005 4:32:39 P.M. EST, strongsgifts@ writes:  Elizabeth I'm so sorry for all these trials you have been facing lately.  I have been following your saga with much interest in the theraspheres treatment that you & Suzanne have undertaken.  I think it may well be a life line for many here on the list. 

I enjoy your posts so much---you have a very expressive writing style, and your courage and fortitude should inspire others to 'look on the brighter side' if you will.  Stage IV'ers, if you are like my Michael was, are thankful for every day & will fight tooth & nail to defy the beast as long as possible.  I would have loved to be present for your performance at Carnegie Hall--how special that must have been for you. 

And now for some reason, you are enduring these setbacks.  I try to think that everything in this life happens for a reason-----but as things relate to the beast---I cannot find a reason.  Then we get into the anger phase. 

My anger is directed to the medical community in general and I guess somewhat toward Mike's family & his PCP.  I firmly believe that his disease could have been prevented or at least found at a much earlier stage if medical guidelines looked at the grandparent generation for increased cc risk.  Mike's maternal grandfather died at 54 (before Mike was even born) of advanced cc, and his paternal grandmother had cc in her 70's which was a contributing factor to her death.  Both had colostomies.  Neither of Mike's parents have been scoped EVER---both are 75---and that makes me MAD.  His two sisters are in the process----1 done with no polyps---the other to be done next month.  Therein is the main source of my anger.  WHY didn't someone in that family ever follow through with at least asking questions about cc screening----and Mike's oldest sister is a RN! AAAAGH! Instead, Mike goes to the ER at 42 for a kidney stone & ends up being diagnosed with stage IV cc---ABSOLUTELY NO PREVIOUS SYMPTOMS---tumor nearly obstructing---already broken through the wall of the colon, mets to liver & lung "with more extensive disease than we like to see at initial diagnosis" were the words of the onc at the first visit. 

Here I have trouble finding the reason why. 


Now, I too, am a relentless & vocal 'pain in the butt' to make everyone aware of screening so no one else has to endure the hell we have been through.  It still breaks my heart that Mike had to endure so much & was gone after only 20 months. 

Dear Sheila,

GMTA! We must have each been writing our posts at about the same moment, since I just wrote in response to the ANGER thread.  I know you feel the same frustration, anger and regret that I do about the weaknesses in the medical system, about the denial of people at risk for serious illness, about that word PREVENTABLE in tall burning letters heading up our slogan, about the terrible loss and tragedy of this disease.  As wife and caregiver, you got sucked up into a disaster not of your making, you had to bear the burden for your beloved. 

Let me tell you, the saddest thing I ever heard was what some of the nurses at the oncology ward of the hospital told me: How marriages often break up over cancer, how many people there are that don't have what it takes to face the challenge at the side of their loved one, how they cut and run leaving the patient to face the beast alone.  The nurses told me of patients who lay in the ward for months with no visitors until death was near and the "vultures" showed up, arguing with each other across the sick bed.  Sad tales of human frailty!

The people on this list and others like them are the fighters, standing tall in love and strength.  Like the Marines in a way, their pretty uniforms belying the ugliness of the business of war yet expressing the courage and honor they display.  The few, the proud... 

Standing by and sticking to it when cancer strikes is not the obvious and obligatory thing to do.  It is beyond the call, the extra mile, the exception that shows God that we humans are indeed redeemable beings worthy of His love.  No one should ever take that kind of love and care for granted!

You have every right to be mad as hell.  Cancer is war and war is hell, bringing out the worst in some and the best in others.  It brought out the best in you, your courage and love, and yes, your anger. 

I am glad you stay in touch with this list, I promise to write whenever I'm having a good day. 

Proud of you, Elizabeth

-------------------------------
Date: Sat, 4 Jun 2005 17:42:50 EDT
From: Elizabeth Parcells 
Subject: Re: Elizabeth, hope & anger

6/4/2005 5:37:20 P.M. EST, suewarner16@ writes:

Because of your research and posts here, I have mentioned Thersapheres to my mom's onc.  She is stage iv cc, with mets to 50% of the liver.  They aren't ready to treat the mets with surgery, since chemo is still working (after 21 months of fighting), and her disease is stable.  Although her CEA has gone from a low 24 in November 2004 to 84 in May 2005, I think this is good news.  This may be due to the fact she only gets HAI pump chemo not, systemic. 

The cool thing was that I mentioned it to him before and he said that he had heard of it, but didn't think Mom was a candidate.  After the ASCO conference, he had to do a crash course to present and now he sees it as another promising option for stage vi cc patients with mets in the liver, especially if they have the HAI pump. 

Bravo Susan! I love that the doctor had a change of heart because of your persistence! I hope this treatment can be available to many, many more patients very soon.  Elizabeth

----------------------------------
Date: Mon, 6 Jun 2005 20:12:26 EDT
From: Elizabeth Parcells 
Subject: Re: Theraspheres at Northwestern

Hi,

Quickly, TheraSphere treatment is a type of radiation delivered directly to the liver in this case.  The treatment is at present FDA approved for unresectable primary liver cancer.  The program at Northwestern offers this treatment for unresectable secondary liver cancer as an off-label study conducted by Dr. Salem.  You can see information on the TheraSphere device itself at the web site:

http://www.mds.nordion.com/therasphere/

A few of us here have personal experience with this treatment, so if you have more questions, feel free to ask. 

Elizabeth

-----------------------------
Date: Mon, 6 Jun 2005 20:21:02 EDT
From: Elizabeth Parcells 
Subject: Re:

6/5/2005 9:23:57 A.M. EST, thecents@ writes:

My song, I gave to Tom.........

How did I ever get so lucky To be lying in your arms I wouldn't trade my life For someone's millions I'm just thirsty and you are water... Some want wisdom Some need fame Some want a mansion far away All I need is your tender loving I'm just thirsty And you are water... The way I feel when I hear you call It's just like heaven, when a gentle rain falls... I know the good Lord must have smiled On the day he made you And I'm just grateful that he heard me praying He said "You're just thirsty" And he gave me water I'm just thirsty And you are water Patty Loveless

I apologize for the length but thank you for listening.

Sharon Proud Wife of Tom.....still


Sharon,

Thank you for your beautiful post.  I don't cry often, but you got me. 

Peace and love to you, put aside regrets and remember the triumph of the human spirit and the victory of true love. 

With admiration and thanks, Elizabeth

---------------------------------------
Date: Tue, 7 Jun 2005 16:09:50 EDT
From: Elizabeth Parcells 
Subject: The System

6/5/2005 12:19:36 P.M. EST, amwells1@ writes:

All I seem to get is run around.  Meanwhile I am getting worse and more morbid in my outlook. 

I called one of the admin.assts.  and asked her to check with doctor to see if I could get stronger medication for pain, and medication to help me sleep at night.   I was shocked when she replied try herbal tea that will help you !!!!!!!!!!

I have even tried calling after hour doctor in group for pain meds and was told to go to emergency room. 

Anyone have any ideas on how to get past these admin.assts. to Doctor ? or get my test results ?

Hi gang,

Time to *itch about the failings of large hospital "health" systems again.  I am being treated at such a large hospital system.  The obvious advantages are having your case and records all in one place so that your assembled team of doctors and nurses always have access to them, convenience of "one-stop shopping" and having access to great resources and personnel.  Doctors from the various departments meet regularly to review patient cases together, sort of a built in second opinion for the patient. 

The down-side: in the health system's efforts to be cost effective and efficient, often the patient loses out on some basics.  After my health system changed their central phone system, it became nearly impossible to talk to anyone at the hospital but a triage phone operator who takes your "message." Then you can wait a very long time before anyone returns your call. 

It's no fun sitting in a wait loop on the phone hearing "Your call is important, please stay on the line blah blah blah ...  music and ads ... blah blah blah ... Your call is important ..." Talking to your doctor directly becomes a rare occasion indeed.

When you do get someone on the phone, it is usually a resident you have never met.  They treat you over the phone, or if they feel they can't help you, send you to the ER. 

I have been to ER more times than I like to think about because my illness doesn't keep good business hours.  It's expensive and you are again dealing with doctors you don't know and who don't know you.  They keep you waiting for hours and often have to cut through miles of precautionary tests and red tape before they can help you at all. 

I feel like an old car that never gets serviced except by calling AAA emergency roadside service! Going to ER means that once again, your regular physicians have escaped the necessity of seeing, examining or treating you. 

Health care is so expensive these days that even top of the line health insurance doesn't guarantee satisfactory care conditions.  I suppose if you buy a wing or two, give millions, get the place named after you, the hospital might give you preferential treatment.  That's not most of us.  We wait our turn. 

Speaking of which, whoever invented waiting rooms should be shot at dawn.  The patient spends entirely too much time waiting, and if you have a bone lesion in your rib and need to lie down, the experience is far from pleasant.  A few times sitting in a waiting room, I have been so overcome with pain that I started to weep and sob, and THEN the nurses came for me.  Do I have to create a scene to be seen?

To whom can you complain? Who has the power to change and improve things? I think probably the place to start is in accounting.  Then require psychological evaluations of health care personnel regularly to see if they are becoming jaded and callous.  Then I should have my head examined for even putting up with such situations!

The health system was built for us, the patients.  But it has become so corporate-like that it tends to make changes that benefit itself, not the patients it should be serving.  Doctors and patients are estranged by its workings, money is spent in the wrong places and health care becomes ever more impersonal.  Forgetful of its mission, it's business only. 

If I am being too harsh on these big hospitals, let me know.  But once you get inside a system as a receiving end patient, you are literally painfully aware of its flaws.  For us, it is well to recognize the flaws in the system to learn how to PLAY the system.  When I complained that it takes five weeks to get an appointment with certain doctors (I should live so long!) the nurse suggested I make a series of appointments now for later in case I need them, and cancel them later if I don't.  Hmm.  Creative!

I know this *itch session applies to large health systems mostly, but if we think of how to beat the system, maybe we can get better attention from our care providers.  A few well placed complaints to the system or insurance companies may bring relief, its worth a try... 

Thanks for listening, I feel better for the venting, Elizabeth

---------------------------------
Date: Tue, 7 Jun 2005 16:20:37 EDT
From: Elizabeth Parcells 
Subject: Re: Theraspheres at Northwestern

6/7/2005 4:05:08 P.M. EST, lfitz@ writes:  Elizabeth, Thank you for your email and the link for Theraspheres.  I guess I wouldn't be a candidate for this procedure as my liver cancer is not primary cancer - it has spread from the colon.  Thank you Lynne


Lynne, you might be a candidate for TheraSpheres IF you doctor has told you that you cannot have liver resection (surgery).  The doctor has already told you your liver involvement is secondary to colon cancer, so the Study at Northwestern Memorial Hospital with Dr. Salem might be a possibility.  That is because they will treat patients with secondary liver cancer in their study program.  If you are not sure about this, call or email _acourtney@nmff.org_ (mailto:acourtney@nmff.org) who is Dr. Salem's PA and she will help you.  She will request certain of your medical records and scans and let you know if you qualify. 

Don't give up, Answers are out there, Elizabeth

--------------------------------
Date: Wed, 8 Jun 2005 16:23:49 EDT
From: Elizabeth Parcells
Subject: Re: Bone mets

6/8/2005 11:05:53 A.M. EST, mullins417@ writes:

During my husband's 6 month round of 5FU, he developed severe lower back pain.  He had an MRI which showed no metastes but what his onc called bulging discs.  She sent him to an orthopedist for treatment.  He received one steroid shot to the lower spine that had no effect on his pain.  We tried another orthopedist who specializes in bulging discs.  His assessment was that he was suffering from arthritis, not bulging discs.  He put him on Bextra which controlled his pain somewhat.  After it was pulled from the market, he was given Celebrex, which didn't work as well.  When his liver mets were discovered last month, he opted to take morphine instead of Celebrex.  The pain is getting no better and is now radiating into his pelvis.  Should we be asking for another MRI? Thanks, Beth, Dan's wife


Dear Beth,

YIKES!! You already said it in your subject "Bone mets." I too had mysterious pain which it took the doctors too long to realize was a bone lesion.  I kept saying, no broken rib or soft tissue lesion I've had ever hurt like THIS! Pain killers be damned, the pain was unmanageable!

The bone lesion was finally caught on a PET scan, and even then the docs took awhile to come around to it.  At last the pain was so bad I insisted on radiation.  And sure enough, the radiologist was able to confirm that it was a bone lesion as I had suspected. 

Get a PET scan and a bone scan to catch this lesion, if it is one.  Pain that bad has a reason and the sooner you find it the sooner they can get rid of the pain, probably with some radiation.  My pain improved dramatically within hours of the first treatment!

Wish you luck, Elizabeth

--------------------------------------
Date: Thu, 9 Jun 2005 13:20:36 EDT
From: Elizabeth Parcells
Subject: Re: Bone mets

6/8/2005 9:04:40 P.M. EST, katemm@ writes:  The editorial writers are bold enough to question whether US radiologists are practicing evidence-based or reimbursement-based medicine. 

Radiation is effective in relieving pain from bone mets.  It is not a treatment to destroy them nor does it improve survival times.  But they can be extraordinarily painful. 

However, you might want to question whether 10 trips to the radiologist, when you are already in pretty significant pain, along with 10 sessions on a hard radiation table getting positioned for treatment is necessary.  Copy the editorial and take it with you to back up your query. 

I've also posted a link to Cancer Advances which is ASCO's consumer-directed newsletter.  They report out some of the most important outcomes from ASCO 2005. 

Kate

For more information: http://cnews.blogspot.com


Dear Kate,

Thanks for this very useful information.  I have had many questions about the various complications I have experienced.  Bone lesion in the rib is the latest.  Very painful indeed! I had five radiation treatments for it.  After the very first one my pain improved greatly. 

I had already had trouble with DVT and PEs not long after treatment began.  Last week, in the middle of the radiation cycle, I again experienced shortness of breath with a suspected embolism to the right lung.  Back to the hospital for four days. 

These two things, clots and bone lesions, were not mentioned to me as things to look for with colon cancer.  Both took me by surprise. 

If it is true that certain complications are unusual for colon cancer, then the reaction time of both patient and doctor is bound to be slowed.  In the case of bone mets, when they are not diagnosed in a timely way, the patient endures needless pain.  With clots, the consequences can be fatal.  It is frightening to say the least. 

I will try hard to be on the lookout for any unusual symptoms now and be very loud and persistent when I do notice any.  Better to cry wolf than to miss something important. 

I have appointments coming up where I will be talking serious stuff with my doctors.  I'm not a happy camper right now. 

Elizabeth

-----------------------------------
Date: Thu, 9 Jun 2005 23:11:02 EDT
From: Elizabeth Parcells
Subject: Re: Bone mets


6/9/2005 8:34:42 P.M. EST, mullins417@ writes:

>I think some oncologists and their staff are afraid to trust patients with the >truth.  It's a sort of pat on the back and "Don't worry dear,"

Boy, we found this to be true today.  My husband had a ct on May 10 that showed multiple liver lesions.  We went to a large cancer center for a 2nd opinion and the surgeon informed us he also had several lymph nodes pressing on his ureter and compromising his right kidney.  When his onc was asked today why they hadn't been mentioned, she said that when there are several affected areas, they wait and see if the chemo works before mentioning them since if the chemo works, it will work everywhere there is disease.  I was furious! I wasn't present when she told this to my husband, but the next time I see her I will certainly tell her we want to know every site that it has invaded.  We left the 2nd opinion consult stunned that our supposedly reputable onc AND her radiologist had missed cancerous lymph nodes when in reality it was just a case of her deciding what we should and shouldn't know. 


Amen! Withholding information defies the patient's right to make his own informed decisions.  It undermines patient confidence and creates the fear of "what else aren't they telling me?" We are asked to sign forms ahead of treatment that say we have been fully informed.  But have we?

If a responsible adult is not handling the truth, there is counseling available from professionals.  I wonder if the Oncologist is overstepping his role by deciding what information the patient can or cannot "handle" psychologically. 

I prefer to be told everything.  I am learning from harsh experience to be persistent and vocal.  Ask and ask again. 

We once wondered on this list, what do we tell the patient? Now we need to discuss, what do we tell the doctor?

Elizabeth

-------------------------------
Date: Sat, 11 Jun 2005 17:50:01 EDT
From: Elizabeth Parcells
Subject: Re: Health care


6/11/2005 12:50:28 P.M. EST, shamchak1@ writes:  Must be I am intellectually challenged, otherwise, why I did not understand the head or tail of GPS's posting?

I also did not understand what he means by socialized medicine.  But it is true that, the medical system what I see in these North European countries, and what I hear from the list members in US, I get a cold shiver in my spine.  Its true, I earn much less than my contemporaries in US- may be about 1/5th.  But, I get a comparatively good health care- at a very moderate cost, and that goes primarily to every body.  Probably the same surgeon who operate upon the President of Finland (if needed) who operated me.  The same medical oncologist and facility would be available to everybody.  The only difference is, probably in the priority. 

I read postings where an anguish of getting bankrupt is expressed.  I am deeply saddened.  Somebody should raise their voice- not only in this list, but outside also. 

- shyam


----------------------------------
Date: Sat, 11 Jun 2005 19:18:35 EDT
From: Elizabeth Parcells
Subject: Re: Health care


Sorry about that, I wrote a response to this and then it somehow got dropped.  O well... 

E
-----------------------------------
Date: Sat, 11 Jun 2005 19:43:01 EDT
From: Elizabeth Parcells
Subject: Re: Health care

Shyam,

I lived in Germany for twenty years under the socialized health package they had at that time.  During those years, the German economy was sound and the health system had money.  They even paid for things like thermal mineral baths and "cures" of up to six weeks in the country.  Massages and homeopathic medicine was paid for on prescription too.  But as the general economy of the country faltered, the benefits the health system was willing to pay for began to dry up. 

Socialized means that all citizens use the state health plan paying in via their employers.  Comes right out of your paycheck.  I don't remember being offered a choice in the matter.  In order to offer the plan at low cost, everyone must participate.  It is rather like our Social Security in that regard.  But what was a great idea in the 1950s has become a nemesis under rising health costs of modern medicine. 

Add to this, the system was abused by many, especially the doctors and Kurbad resorts.  Every time I visited the doctor in Germany, he took blood, urine, wrote prescriptions and urged x-rays.  The system pays the doctors for the prescriptions they write and the tests they do.  And the pharmaceutical industry there played along with high prices.  I used to buy things like Aspersing and Maalox at home in the States, because they cost a small fortune in Germany. 

When I returned home in 1997, I immediately joined Blue Cross.  Okay, no thermal mineral baths or country retreats, but I have been much happier with the care I get here.  I never trusted the German system to do right by me if the chips were down.  I was diagnosed with stage IV colon cancer in 2003.  I feel very lucky to be back home in America. 

The dream of cheap health care coverage for all is still a ways off here.  It is a matter of the ideology of freedom of choice.  I am nervous for members of my family who chose not to get coverage, and my heart goes out to those who simply can't afford it.  Cancer loves to ambush people.  All I can do is urge those who can get coverage to do so. 

The stories I hear from Canada bring back memories of Germany. 

Elizabeth

6/11/2005 12:50:28 P.M. EST, shamchak1@ writes:  Must be I am intellectually challenged, otherwise, why I did not understand the head or tail of GPS's posting?

I also did not understand what he means by socialized medicine.  But it is true that, the medical system what I see in these North European countries, and what I hear from the list members in US, I get a cold shiver in my spine.  Its true, I earn much less than my contemporaries in US- may be about 1/5th.  But, I get a comparatively good health care- at a very moderate cost, and that goes primarily to every body.  Probably the same surgeon who operate upon the President of Finland (if needed) who operated me.  The same medical oncologist and facility would be available to everybody.  The only difference is, probably in the priority. 

I read postings where an anguish of getting bankrupt is expressed.  I am deeply saddened.  Somebody should raise their voice- not only in this list, but outside also. 

- shyam

----------------------------------
Date: Sun, 12 Jun 2005 04:52:25 EDT
From: Elizabeth Parcells
Subject: Re: Bu

Dear Shyam,

Wow, I'm moving to Finland!

I guess the main reason I am glad to be in the USA is because it is my home.  I am well aware that our free enterprise health insurance system leaves much to be desired and many people without coverage.  That is a wrenching problem.  I also admire the social programs in northern Europe and hope they survive economically.  Other things that are free in Germany are a university education and the Autobahn.  Germany has a system they call "capitalism with a heart" that promotes free enterprise while paying for many social things like health care and education.  The combination is tricky to maintain without very high taxes.  My paycheck in Germany got whacked by over 50% for taxes and social programs every month.  So I was certainly paying for all the "free" stuff. 

Here at least, you get to decide...  and because I am a US citizen, I even get to vote!

Elizabeth

---------------------------------
Date: Sun, 12 Jun 2005 22:37:15 EDT
From: Elizabeth Parcells
Subject: Re: Bu: was Health care


6/12/2005 8:14:43 A.M. EST, shamchak1@ writes:  Dear Elizabeth,

I said, I am not a very big fan of Finland- they are a new nation and still trying to figure out how to deal with foreigners- a big problem I face every now and then.  And the long cold and darkness.  But if you can tolerate these- some people are really nice- for example, my oncologist and my surgeon (widely respected, though I had a fight with him after my surgery). 

there is nothing called a free lunch, or for that matter, free education, health care etc.  Somebody has to pay for it.  This comes from taxes.  The good thing is that, nobody is stinkingly rich in this system, so wealth does not accumulate like fat on the belly and buttocks.  You get a decent life rather than riding a Ferrari.  Off course, not everybody would agree with me.  Greed is a widely recognized virtue (and known as market economy).... 

And its also true America is your native country.  That also matters.   BTW, have you heard Sibelius? What is your frank opinion about him?

- Shyam

Hi Kate,

An ideological discussion would indeed be out of place on this list and I do not want to start or contribute to one.  I have lived in many places and have learned to be an observer.  As a classical singer in the public eye it was never my place to express political opinions.  I will not start now.  Thanks for the clarification. 

Hi Shyam,

It's true about the long dark winters in Finland.  And the summer when the sun never sets.  If you didn't grow up there it is a very hard adjustment.  Like having jet lag all the time. 

But I am glad that you have had such good luck with your health care in Finland.  It sounds like the health system there is treating you well and keeping your cancer at bay.  If you find the darkness depressing, ask about light treatments.  An hour a day exposed to the correct light rays can do wonders.  Turn on the lights and listen to Sibelius Finlandia which I think is wonderful music. 

Elizabeth

------------------------------
Date: Mon, 13 Jun 2005 04:30:18 EDT
From: Elizabeth Parcells
Subject: Re: a short story

6/13/2005 12:27:05 A.M. EST, thefoxfamily@ writes:  I was wondering what people thought of the Cancer Treatment Centers of America? I would greatly appreciate your time and feedback.  God Bless all of you and do not give up on the fight! Missy, loving wife of Andrew

Hi Missy,

I have taken a long look at the CTCA.  They are good responders when you first contact them and call you up and send you info and stuff.  I'm sure they are fine, though I have no first hand experience with them.  The reason I decided to stay close to home is that I can get the same quality and types of care in my home city and wanted to spare myself and my family so much traveling, as the nearest one is six hours drive from us. 

Maybe you will hear from someone here who has been treated there and can say more about them specifically.  But if you can get good care conveniently near home, that would be my pick.  Now that I feel worse, I am awful glad I don't have to travel far away to my doctors. 

Elizabeth

------------------------------------
Date: Thu, 16 Jun 2005 17:44:12 EDT
From: Elizabeth Parcells
Subject: Re: anti-depressives

6/15/2005 5:29:46 P.M. EST, jaybyrd1@ writes:

someone said: "Whatever you do make sure that Toni isn't given something like Zanax.  I took a valium after my dx of colorectal cancer ------Oh my Goodness----no muscle relaxers please.  I was vomiting , voiding at same time for about a day.  Zanax is similar to valium and often given for light depression."

We are throwing "blanket advice" around here, maybe not the best thing to do.  Some medications work for some people, but not for others.  For some, morphine is a Godsend for pain relief ...  for others, this same drug can cause life threatening illness. 

Best to get advice from a medical professional when it comes to doling out the drugs. 

Hi folks,

I think we can talk about our own experience with a certain med that might help someone else put their own experience with that drug into perspective, without actually giving medical advice.  It is true that each of us is different and react differently to medications due to our unique equations of conditions.  Even a doctor with first hand knowledge of his patient and the med finds the prescribing and dosing tricky.  To be safe, none of us should be giving out specific advice. 

But we can continue to share our personal experiences.  I have learned a lot from the stories I have read here.  Still, I ask the doctor first for my own case.  But let's keep telling our stories. 

Regards, Elizabeth

-------------------------------------
Date: Thu, 16 Jun 2005 18:02:53 EDT
From: Elizabeth Parcells
Subject: Re: Thoughts on CC


Hi Margaret,

Loved your thought on CC.  You are so right on with the risk factors.  This thing can hit anyone at anytime.  So when the guilt trip comes on, I like to say:

FATE not FAULT

Illness, as with other calamities, is not picky about its victims.  I am glad to see you have a fighting spirit.  Your energy will go far toward your recovery since you plan to aim it that way.  After nearly two years of fighting, I admit to feeling discouraged at times, but somehow I keep finding good reasons to carry on. 

You are in the right place to vent.  Feel free to air your feelings here, we all understand perfectly.  Godspeed on your journey. 

Elizabeth

-----------------------------
Date: Thu, 16 Jun 2005 18:28:54 EDT
From: Elizabeth Parcells 
Subject: Re: stereotactic radiation on lung tumors

6/16/2005 10:30:46 A.M. EST, Mooncrazy@ writes:  My sister and I consulted with a radiation oncologist about her primary lung cancer yesterday.  He said the 2 largest tumors which have shrunk with 2 rounds of chemo.  just a little (now 4.2 and 1.8 cm.) can be destroyed with stereotactic radiation.  He feels about 90% positive of completely eliminating these.  The other 4 or 5 are too small to do anything with.  I was all for doing the radiation immediately, he's saying 3 treatments.  My sister wants to continue on the chemo until it's no longer effective and then do it.  If she does this she'll get kicked out of the clinical trial using IV Iressa aas a first line chemo.  She is set to start the Iressa in 5 weeks.  I can't remember hearing anyone on this list is getting stereotactic radiation for lung mets.  Has anyone had it at all for anything?

Randi


Randi, I'm confused.  Does your sister have primary lung cancer AND primary colorectal cancer, or are her lung tumors metastasis from primary colorectal? This would make a very large difference in your treatment decision tree. 

I have primary Colon Cancer with mets to the lungs.  No radiation to the lungs has been suggested in my case.  I am doing systemic chemo to address the metastsis in several areas of my body. 

It is important to know where the cancer originated. 

Elizabeth

----------------------------------
Date: Thu, 16 Jun 2005 18:58:18 EDT
From: Elizabeth Parcells
Subject: Re: Hissey Fit!

Hi all, time for me to vent. 

I had a hissy fit at the chemo suite today.  I asked for a printout of my CT scan report from Tuesday this week and was refused.  The chemo nurse said she couldn't give it to me until my doctor had talked it over with me first.  At first glance that seems reasonable... 

Background: I have been in an intense fight against liver tumors, pulmonary embolism, severe pain issues and side effects from pain meds, a broken rib and a bone lesion over the past few months.  We took some wrong turns along the way because tests seemed inconclusive, and in some cases I was having a hard time getting complete information.  I have been x-rayed scanned and scanned again for these complications, and have had to rely on what I was told.  The bone lesion was missed for over a month, so that I endured level 10 pain when a simple course of radiation would have brought relief long since. 

There is a history of keeping information from me which I need not elaborate upon here.  The friendly chemo nurse was willing to give me a copy of my labs, which report the upsetting news that my CEA has shot up to 299.1 from under 100 two months ago.  But when she was unwilling to give me my latest CT scan report, I think I lost it.  I tried every argument I could think of, but she politely refused. 

Tomorrow I will start a campaign to get printed reports from ALL tests done since January including the ones the doctor didn't talk with me about specifically. 

In refusing my request.  the nurse cited some "rule" about CT scan reports and doctor consultations.  I would like to read the rule book where that is written. 

Remember, I have already heard all the bad news they have to tell me.  This newest report would only be keeping me up to date on what I already know: that stage IV colon cancer will progress and ultimately kill me.  So what could there possibly be in this report that is so unexpected? I am well educated and have a right to complete and timely information on my case. 

I say, if a patient does not want to know, or would like some hand holding, fine with me.  But when a well informed patient asks and requires to know, that is well within his rights. 

I will let you know how my talk with the records department goes as to what "rules" they have on disclosure to the patient of his own information.  This is so BOGUS!

Ahhhhhh I feel better now.  Thanks for letting me vent too. 

Elizabeth

---------------------------------
Date: Thu, 16 Jun 2005 19:55:34 EDT
From: Elizabeth Parcells
Subject: Re: Hissey Fit!

6/16/2005 7:11:06 P.M. EST, nra127@ writes:  I certainly understand your frustration, believe me.   And I am sure that you have taken into account the fact that an RN is not in a position to deliver these kinds of results to a patient, no matter how hard they try! I can tell you, from working in a hospital that we nursing staff are reluctant to take on the role of delivering results that it is traditionally the role of the physician to deliver.   The RN saw this as an inappropriate action, I am sure.   It is just too bad that she could not have called the physician to see if he could spare a moment to discuss the results with you at that time.  

I do understand the nurses point of view.   I would not want to get her into any trouble.   But trust me.  With or without the docs, I SHALL have my info.  I just have to get the rightly authorized person to comply with my request.  Maybe they will put this in my chart after I get to be a big enough nuisance.  "Whatever she wants, just give it to her."

I'm cooling off, but still somewhat pissed. 

Elizabeth

-------------------------------
Date: Fri, 17 Jun 2005 02:56:54 EDT
From: Elizabeth Parcells
Subject: Re: Hissy Fit!


6/16/2005 9:38:50 P.M. EST, jaybyrd1@writes: Have you ever thought of taking up kick-boxing?

Carl

Hi Carl, thanks for the validation.  Actually I find verbal lashing just as effective as a kick in the head.  Wish me luck. 

Elizabeth

--------------------------------
Date: Fri, 17 Jun 2005 03:06:09 EDT
From: Elizabeth Parcells
Subject: Re: Lung treatments

6/16/2005 9:46:24 P.M. EST, Mooncrazy@ writes: By the way, my sister has primary lung cancer, no other cancer and none anywhere but the lung. 

Randi

Hi Randi, That clarifies things.  Since I don't have any experience with primary lung, I have little to say on treatment decisions.  And there are many varieties of lung cancer.  Some are more aggressive than others and this also effects the treatment decisions.  There are a couple of very good places on the Internet to study up on the precise diagnosed form of cancer your sister has and the American Cancer Society at Cancer.org is a good starting point.  Google searches are also very fruitful. 

I have heard good things about a thing called the Cyber Knife, a form of very precise radiation treatment to "cut" out lung lesions, but you would have to study that further and ask your radiation oncologist about it first.  Lung cancer is a very mainstream condition and there is a huge about of research out there on it. 

I wish you well on your journey, Elizabeth

--------------------------------
Date: Sat, 18 Jun 2005 21:29:53 EDT
From: Elizabeth Parcells
Subject: Re: Trial breakthrough as 'super drug' makes inroads on cancers

Hi all. 

I'll weigh in on the issue of new "breakthrough" information.  I too read whatever comes over the wires about new drugs and treatments just to keep up with the trends.  I have a sister who is heavy into alternative stuff and food supplements.  She keeps me up on those trends too.  Well meaning friends and family have also dangled "cures" in the form of such news articles or testimonials as seem always to lurk around. 

I try very hard to keep it all in perspective.  For one thing, many of the news items begin as press releases intended for investors who are looking for promising long range investments in the possibility of a significant market in the future.  These news events do not pertain to cancer patients who would need that undeveloped medicine, say, starting next week?

Medicine needs to be available now to be of service.  It is frustrating to wait for things to come to the market.  Clinical trials are part of the answer for some patients. 

Hope is a wonderful thing.  But false hope can be devastating.  So when someone tells me that some fabulous fruit juice with antioxidants, or an isolated protein represent a potential cure for my stage IV colon cancer, I have to stop them there and make sure they understand.  It doesn't help me or them to bask in false hope.  Better to concentrate on the treatments that ARE available now and keep your treatment goals out front. 

Hope for the future is comforting.  As a life long cancer survivor, I have unshakeable faith that cancer, all cancer, will be curable someday.  Millions of brains are working on the problem and I know all that brainpower is going to pay off some day, perhaps soon.  In the meantime, I have promised myself I will not be vulnerable by desperation.  I will fight my battle today and cherish hope for future generations. 

Elizabeth

-------------------------------------------
Date: Sat, 18 Jun 2005 21:59:10 EDT
From: Elizabeth Parcells
Subject: Re: Hospice

Dear Kathy,

I am so sorry to hear that David is getting so weak.  But you are wise to consider Hospice at this point.  When you meet with them tomorrow, I'm sure they will be able to offer you a number of approaches to consider.  Your questions will come to you as you discuss the options. 

Back in 1995 when my mother was dealing with end stage melanoma, the hospital offered us hospice service.  They were releasing her as there was nothing more they could do.  We were unprepared for that situation, but I opted to stay with her and take care of her.  She was upset by the idea of strangers at home.  She didn't want to have a sick room or any special equipment around to remind her.  We indulged her, and I did my best.  But after two weeks, I was so exhausted and sleep deprived I could not go on.  We did finally get in a night nurse. 

After it was over, I began to realize how much better and easier things would have been for my mother and for me if we had been willing to accept hospice help.  I have thought about that often since then. 

My own cancer is progressing and I feel too unwell to get up or go out much.  Some days are better than others.  I was diagnosed in July 2003.  I have gone through most of the chemo treatments available, and have tried the Therasphere treatments, hoping for good benefit.  I think I have done well. 

But when the time comes, I will seek help with hospice to make things easier on everyone.  I will want my privacy too, letting the pros take care of my needs while spending quality time with my family. 

I wish you well and hope you find the best possible solutions for David and yourselves. 

Elizabeth

-------------------------------------
Date: Sun, 19 Jun 2005 22:49:32 EDT
From: Elizabeth Parcells 
Subject: Re: Hospice

6/19/2005 2:48:44 P.M. EST, harryrezz@ writes:  So, as I said, make sure that ALL details are discussed and settled - including making sure that your understanding of what things mean matches their definitions (might even get special items in writing) - so you can avoid such nasty surprises down the road.   Best Wishes - Harry


Dear Harry,

First, I think Bella is phenomenal the way she keeps bouncing back! Please convey to her my undying admiration for her fighting spirit.  

You have given me some food for thought.  I had heard that there is a divide between what the insurance will pay for in treatment mode and what they won't pay for in Hospice mode.  It appears that Hospice is not just a service, but a patient status. 

It seems very difficult to draw a clear line between treatment and hospice care for a given patient.  All of the treatments I receive are considered "palliative" that is, to relieve symptoms and prolong life.  And yet, it seems there are even palliative treatments that would be discontinued under Hospice.  I find this confusing.  Someone will have to fill in the blanks for me. 

If and when I consider becoming a hospice patient, I think my questions will center around treatment and insurance matters, thanks to your post. 

A middle ground for relieving caregivers and helping patients might be some form of private home care.  Here again, this might be an expense not covered by insurance and out of reach financially for many people. 

Thanks for pointing out the potential flaws in this system so we can all be on the lookout. 

Elizabeth

--------------------------------
Date: Wed, 22 Jun 2005 12:39:27 EDT
From: Elizabeth Parcells
Subject: Re: Hospice- Are visits covered by Medicare & Other Insurance?

6/20/2005 10:38:27 P.M. EST, katemm@ writes:  Palliative is a difficult word -- chemotherapy given for metastatic disease is palliative.  Its "intent" is not curative but to reduce symptoms and extend survival time.  Hospice does not provide this level of palliative care. 

My understanding of how chemo reduces pain (and I may be wrong) is by reducing tumor size or by keeping tumors stable.  When chemo can no longer do that, other pain management approaches are necessary. 


Hi Kate,

Yes, "Palliative" is a word that seems to be used with more than one definition, and being an adjective, is by degrees or levels.  More or less Palliative, sort of like more or less beautiful. 

I do have trouble establishing a common vocabulary with my medical people, since I tend to understand the same word differently than they do.  Palliative is one of these words. 

My recent experience with a painful bone lesion and the attempts to control that pain with various opiates and morphine taught me a little something about palliative care.  Pain drugs are not always the answer either.  I could not tolerate any of them! The only thing that brought me relief from that severe pain was radiation treatments.  Would Hospice have covered this?

On the one hand, as I get weaker, I could use a little attention at home and support for my family.  On the other hand, I don't want to compromise my options to treat my pain. 

So based on our discussion here, I would have many questions and concerns for a switch to Hospice, which sort of tells me, I ain't nearly ready for Hospice!

I am thinking about the future and what my needs might be.  I was always a planner and planning helps one feel in control.  "One day at a time" is hard to stick to for planners like me, and my mind tends to race ahead.  No one knows the future, really, and the old adage still holds true.  "Life happens while you were out making other plans."

It is good to be informed of options and choices, to gather information that may be helpful later and to tuck it away for when it is needed.  A lot of my planning ahead is intended to help my family with decisions by expressing my wishes now.  I appreciate this list because we can explore these subjects ahead of time, which is the best and most comforting support a patient can have.  Thanks to you all. 

Elizabeth

--------------------------------
 

Date: Wed, 22 Jun 2005 13:22:30 EDT
From: Elizabeth Parcells
Subject: Re: Soothing Parcells

6/21/2005 10:28:48 A.M. EST, katemm@ writes:  Last night, in quite a bit of pain, I was eased to sleep by a CD by Elizabeth Parcells (soprano) and Felix Justen (guitar) called Night and Dreams.   I assume that the beautiful, clear voice singing Schubert and Brahms was our own Elizabeth Parcells.   I am a great believer in music as therapy and am so happy to have found another wonderful resource for peaceful rest and dreaming. 

Sadly, I think I bought the only copy available from Amazon.com.  However, I suggest you might want to hunt up anything recorded by Elizabeth for your CD player during treatment or during those times when you need something very special to help you rest and let go of anxiety. 

Thank you. 

Kate

Hi Kate,

Yup, it's me... I am so glad you found a copy of that one, Felix and I produced it ourselves and it was originally distributed by KOCH-Schwann International.  It's out of print now.  But we the artists own the rights to the production.  Perhaps an Internet re-issue would be appropriate?

It is a great sorrow to me that I am not strong enough to sing anymore, but singing enriched my life tremendously.  I have a good sound archive, but wonder how best to make it available in this changing music business environment.  My brothers want to help me set up a web domain where some of my work can be downloaded or streamed.  Your kind words about my singing inspire me to push this project forward.  It is important to be heard, and my work does no good sitting in a drawer. 

Elizabeth

------------------------------------
Date: Wed, 22 Jun 2005 17:38:21 EDT
From: Elizabeth Parcells
Subject: Music and hair


Dear Karen, Erika, Janet, Allison, Margaret, Sylvia, Dancing, Y'all,

Thanks for the encouragement! I'm gonna call up my computer Internet savvy brother right now and see how quick I can get some of my work up and stream-able for you to hear.  In all, I have three CD recital productions of the Duo for Voice and Guitar, one of which was released, being "Night and Dreams".  "Hodie" a Christmas collection, and "Songs of the Half-Light" a collection of American and British 20th century works were not released.  When I went to New York in February, I performed with my guitarist at Carnegie since the Duo is the work in which I have the most personal pride. 

There are other recordings, but I don't own the rights to them.  Look for "A Jenny Lind Gala" from Northeastern Records.  There's a "Home Sweet Home" on there that will slay you.  The oldest recording was from Forlane Records with Leopold Hager conducting the RTL Orchestra doing Bach's Brandenburg Concertos, with Cantata 51 at the end, for trumpet and soprano.  One that is still in print stars Lydia Kavina at the theremin, I guest on one piece called "Whims of the Wind."

Your interest in my music will get me moving on my long delayed web domain.  These are interesting times, when for pennies, artists can publish and distribute their work online.  Isn't it amazing?

Kinda makes you forget how nauseous you are!

I have relied on soothing music to get thru tough times like long sessions in the chemo chair, endless nights in the hospital, boring stretches at home.  Music is good because you can close your eyes, rest and let the music carry you somewhere else.  Listening intently can be an aid to meditation, relaxation, positive imagery and sleep. 

By the way, on hair loss, especially for the ladies, yeah that is a drag.  I used to have long pretty hair (here is a link to my picture Pro Musicis: Elizabeth Parcells  and it was a big part of my image as a classical singer.  When I began chemo, they told me it might thin significantly.  I could not imagine having long stringy hair, so I decided to cut it off while it was still thick and nice.  I put the locks in a box.  I got a short do that was much easier to handle, and then bought a short wig to match it.  Long hair wigs don't look good on older gals like me. 

My hair thinned severely so that the wig was necessary.  People had gotten used to my short hair by then and didn't notice the wig transition so much.  Later, when I took time off from chemo, my hair began to return.  It is still the same color as before, but has some curl to it now.  I cut it very short for the summer and now it looks downright thick! Compared to my old headshot, I look like Peter Pan now.  Everyone says it looks youthful.  Okay, I'll take what I can get. 

Try not to worry too much about the hair.  Your health is much more important, and it will grow back later.  Take it as an opportunity to get a make-over, to change your look to something fun.  There is a wonderful program offered free at many cancer hospitals called "Look Good Feel Better" that you should ask about.  I found them very helpful, especially all the great free makeup!

If you ever feel self-conscious in that new wig, the best thing to do is hold your head up high and smile! Confidence always makes you look like a million bucks. 

Love, Elizabeth

-------------------------------
Date: Thu, 23 Jun 2005 13:52:12 EDT
From: Elizabeth Parcells 
Subject: Re: Listen to Elizabeth - the hair thing

Hi Janet and Susan,

The hair thing is such a personal decision I think, each of us decides according to our own feelings and instincts.   I went for the makeover thing because I knew I was in it for the long haul.   My chemo continues indefinitely, so trying to take care of my long hair did not seem practical for me.   It would of course be different if I were on chemo temporarily or still hoping for a cure and to be back to my "old self" when it was over. 

For me, short hair is much more practical now that much of my time is spent laid up in bed.  I don't have the energy to hold up the hair dryer long enough to dry or style long hair.  So, to avoid looking like a pillow head all the time, I let go of the long hair.  I am happy with my decision. 

It is the change we fear.   In the face of so many changes that illness can bring, to sacrifice our old, familiar appearance and hair style just seems to add insult to injury.   If things had been different for me, I would have kept my waist length brown hair in a tight braid until the danger passed.   As it is, my new short hair makes life easier for me. 

There are good reasons to keep the status quo, and sometimes, good reasons to embrace the changes.   Either way, being as beautiful as you can be is what's important, and that is your radiance from within. 

Best of everything, Elizabeth

----------------------------
Date: Sat, 25 Jun 2005 00:31:03 EDT
From: Elizabeth Parcells 
Subject: Soothing Music

Hello,

Thank you all for encouraging me to start a project I have thought about for a long time.   I have a website now where you can go to hear my CD.  One of the songs doesn't work yet, but I will fix that soon.  Here's the link: http:... 

I hope you enjoy hearing the songs, which Kate found to be soothing.   I am glad the music can serve in this manner for healing, relaxation and rest.  The last piece on the list is actually a lullaby. 

Peace, Elizabeth

--------------------------------
Date: Mon, 27 Jun 2005 10:32:40 EDT
From: Elizabeth Parcells
Subject: Re: venting

Hi folks,

Commenting on "practical" care and advice: I too have plenty to vent about.  Living with cancer and its treatments and complications is frustrating and would test the endurance of a saint.   Add to this the problem that the patient and his caregivers need specific and practical answers to their questions which no one seems to have time or is able to answer for them, and the comfort zone is left far behind. 

In researching my own condition and available treatments, I found mountains of material intended for medical professionals that was very difficult to translate into "English."  I wandered from one website to the next and found tons of information and first-hand stories, and even this message board, which I consider an absolute goldmine. 

Even so, the information on these sites soon becomes repetitive, going over and over the same few treatments and the same decision tree I had seen elsewhere.  This may be because the treatment options are still so limited for colon cancer, but I also see that many of these pages have not been updated in many, many months.  There are no adequate pages on what to do about various side effects, and often the wisdom is glib.   "You don't have to go thru pain or side effects because we have so many drugs to help you.  Just ask" and that sort of thing. 

Another "cop-out" on many sites is the time spent on how to deal emotionally with the initial diagnosis, but with little attention given to longer-term survival issues.  Spiritual and emotional support abounds, but not much practical advice for the long haul. 

What can we do about the "health system" and its failings? How can we make doctors more accessible, nurses better able to spend time with patients, treatments and drugs more tolerable and side effects less painful?  The questions become rhetorical when you see how large and immovable the system has become. 

And what can we do to help the patient and his caregivers cope with this often frightening situation? Because of the sheer cost of professional medical care, a very large portion of care falls to the spouse, a family member or friend, who steps up to the challenge with no prior training or knowledge.   The learning curve is enormous and the responsibility weighs the heavier with the insecurity of inexperience. 

On a positive note, I do have a patient advocate provided by my health insurance who calls me every week and steps in when there is a problem.   She is also there to answer my questions and often makes suggestions for my care when needed. 

But none of these things are available after hours, holidays or weekends.  Murphy's Law, things happen outside regular business hours, and you hate to end up in the ER again and again.   There has to be a better way!


The "case by case" handling of patients' needs makes some sense because yes, each one is different.  But what we have discovered on our beloved ACOR List is what we all have in common.  It is our common ground here that helps us help each other. 


Just another point of view, Elizabeth

-------------------------------------
Date: Mon, 27 Jun 2005 12:12:46 EDT
From: Elizabeth Parcells
Subject: Re: CEA levels

6/27/2005 11:03:51 A.M. EST, ggariani@ writes:  If the CEA goes from 10 to 20 to 130 to 400 etc.... Does that mean the chemo is not working? Is there a scientific guideline telling the oncologist if and when the treatment is effective based on CEA levels? My wife was on Folfox, Folfori ,Erbitus, Xeloda but the CEA kept rising and new CT showed new spots in the lungs.  The oncologist terminated all treatments citing that nothing is working. 

!!! I fear I am soon to be in similar straits.   But at the moment I am on Camtosar (Irinetecan) alone, hoping it will work soon.   My CEA has been way up too, but this is only an indicator, as I understand it.    The doctor is really looking at tumor activity in deciding whether treatment is working or not. 

Still, if my oncologist told me we were out of options, I would definitely get a few more opinions before I accept that just yet.  I wish you well. 

Elizabeth

--------------------------------------
Date: Wed, 29 Jun 2005 16:26:53 EDT
From: Elizabeth Parcells
Subject: Re: Pre-TME

6/29/2005 1:49:13 P.M. EST, mail4barts@ writes:  i everyone, I'm scheduled for my surgery tomorrow.   Any last minute advice?  Anything you wish you had known before you went to the hospital?  Thanks,

Margaret


Hi Margaret,

My suggestion, take a Walkman or CD player or radio, something compact to listen to music with.    Headphones too for privacy.   I was often too tired to watch TV or talk, but I could listen to music and the radio on headphones and found it very helpful and enjoyable.   It was really good for zoning out the hospital noises and so on and very relaxing. 

I took a robe and slippers along for the required walks down the hallways.  Loose fitting and light is best. 

Don't take any valuables or clutter stuff.  You won't need em anyway.  Ever notice how you move into the hospital with a small bag and have to move out with a duffle? People keep bringing you stuff!

Best wishes and good luck to you for a speedy recovery.

Elizabeth

----------------------------------------
Date: Wed, 29 Jun 2005 16:57:22 EDT
From: Elizabeth Parcells
Subject: Re: Marsha's restless symptoms

Hi Michael,

You've already gotten some expert advice here so I won't enlarge on that.  I am sorry that Marsha is having troubles and sorry that you are losing so much sleep.  This is tough.   My thoughts are with you both. 

When my Mom was sick back in 1995 with melanoma, I took care of her the last three weeks.  She had a brain met for which she was receiving radiation.  Also, she was taking an array of medications including Ativan to relieve anxiety and prevent seizures.   She was discharged from the hospital because she dearly wanted to be at home.   But it was more difficult for me, the caregiver, because she declined home nursing or hospice assistance. 

She was short of memory and restless, as has been described.  I had to watch her all the time because she would get out of bed, forgetting that I had told her to call for me, even forgetting she was sick at all.   A few times she fell, which upset me a lot. 

At night, I slept beside her with our nightgowns tied together so she couldn't get up without waking me.  But I didn't get much sleep anyway. 

I didn't have the benefit of a listserver or information to help me with the situation.  Both Mom and I were in deep denial.   Now when I hear you all talk about these symptoms of restlessness and disorientation, I realize what my Mom was experiencing.  All I had in my arsenal at the time was great love for her and a willingness to help any way I could to keep her happy.   We got through it somehow. 

Knowledge and shared experience are the invaluable advantages we have from our list, and of course, great love that makes all the difference to the patient.  So when things seem very difficult, I hope you have what you need to get through. 

Best wishes Michael and Marsha, Elizabeth

---------------------------------
Date: Wed, 29 Jun 2005 17:13:08 EDT
From: Elizabeth Parcells
Subject: Re: what to tell everyone???

6/29/2005 4:49:27 P.M. EST, ess1058@ writes:  I know it would really help mom also but she doesn't want to bother anyone. 


Dear Eileen,

My opinion: ask your Dad if he would like to see some of his friends.  It should be up to him. 

As for your Mom not wanting to "bother anyone."  There is a thin line between being selfless in the extreme and selfish.   She has an issue she hasn't talked about.  I am not going to analyze it, but whatever it is, it is preventing her from reacting to your father's situation with openness.  She needs to be honest about why she is shutting out the world. 

Excuse me for being blunt.   As an advanced cancer patient myself, perhaps I feel inappropriately entitled.  Forgive me.  I understand the problem, sympathize too.  However, you already feel that the situation needs to change.  Follow your instinct and your heart. 

Elizabeth

--------------------------------
Date: Mon, 4 Jul 2005 11:40:07 EDT
From: Elizabeth Parcells 
Subject: Angels

Hello all,

I read with sadness of Michael's watch for Marsha, of losses and grieving.  It is difficult to find words that might help or comfort.  But this list and its members always amaze with human compassion and empathy for each other.  It helps me and my "caregiver in training" to know from your experiences what the road ahead might be.  Life is a precious thing and it is not over until it's over.  The end of life is a time to be closer than ever.  I wish all of us here that comfort of closeness and love to the very end. 

With love and respect, Elizabeth

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Date: Tue, 5 Jul 2005 23:49:53 EDT
From: Elizabeth Parcells 
Subject: Re: The last time I held Marsha Pagan

7/5/2005 9:26:16 A.M. EST, curecancerfirst@ writes:  7/2004 Spent last days in her own bed with her loving husband


Dear Michael,

this is the line that moves me.  Being so close to her as she died and so respectful and loving afterwards, how beautiful.  If death can ever be sweet, you made it sweet for her with your very great love.  Talking to her and holding her those last hours, she surely felt your love coming through. 

Now that she is in God's loving care, I wish you a time of peace and renewal, so that your love for each other continues to enrich your life and bring you joy in sadness.  My heart goes out to you. 

Love, Elizabeth

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Date: Tue, 5 Jul 2005 23:55:03 EDT
From: Elizabeth Parcells
Subject: Music

For those of you who have been visiting my site at www.parcellsco.com , this site will not be updated, Please change your bookmarks to:

www.elizabethparcells.com

I have published much more music here which you might like, including more Voice and Guitar.  It's a work in progress, so stay tuned. 

Elizabeth

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Date: Wed, 6 Jul 2005 10:20:24 EDT
From: Elizabeth Parcells
Subject: Re: Oncologist--What do you wish you had asked?

Hi Kate et al,

What I wished I had asked... I was tongue tied at first, since I had no idea what to ask.  It was hard enough to absorb what I was hearing.  However, after some study and research I had questions.  Since every case is different, I wanted to know specifics about my case.  I avoided letting the doctor lump me together with all cases.  However, diagnosed at stage IV, I was given few options.  That was frustrating.  It was hard to accept that there was so little they could do. 

So I dove in and studied (via Internet) all the available options and when they are indicated or contraindicated.  I wanted to KNOW why the doctor said liver surgery was out for me, why radiation would not be done in my case, why this chemo or that chemo, clinical trials, new treatments, whatever I could find.  I needed to understand my diagnosis thoroughly and why a particular treatment was appropriate for me or out of reach.  I could not face difficult decisions without the confidence of knowledge. 

My doctor was generous with his time.  My sister came with me.  We asked our questions and he gave good answers.  I did notice in time that he did not volunteer much information beyond what he wanted to tell us or what we asked him outright.  This I found curious, but then, I learned to ask more probing questions. 

I was given such a bad prognosis (a year maybe) that I didn't concern myself much with long term issues.  Now here I am embarking on my third year (dx July 2003) and wondering how I will cope over the longer term. 

I wish that I had asked, "What if I live MORE than a year, or two, or three?" Doctors do have patients who exceed their prognosis all the time.  Surely they can tell you more about what's down the road and around the bend.  But they don't like to.  It's always, "One day at a time." Concentrate on today so you can get to tomorrow.  Okay, fine.  But I wish I knew more about really LIVING with cancer, not just treating it. 

That's what I wish I had asked. 

Dx 7/2003 colon IV Surgery 9/2003 Chemo FOLFOX starting 10/2003 Avastin for ten months Break from chemo 1/03-6/03 Progression in liver and lungs Bone lesion radiated for pain 6/03 started Camptosar and Zometa 7/03 weak but okay

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Date: Wed, 6 Jul 2005 19:51:33 EDT
From: Elizabeth Parcells 
Subject: Re: God takes another

7/6/2005 7:46:23 P.M. EST, Reggie74@ writes:  At 4:50 am July 6th, 2005, James "David" Allen took his last breath.  After a courageous 21 month battle with colon cancer David slipped peacefully away, surrounded by his family.  His huge smile will be remembered by all who knew him.  Thank you to all who knowingly and unknowingly provided support through this list.  I will be forever grateful for finding this list.  God bless you all.  Regards, Kathy Allen, wife of David 1/18/62 - 7/6/05 10/03 dx Stage 4 colon cancer with mets to liver 6/04 mets to peritoneal wall 11/04 mets to lungs


Dear Kathy,

I am so sorry for your loss.  His peaceful passing surrounded by family tells of the love he had during his life.  May that love sustain you now. 

Elizabeth

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Date: Thu, 7 Jul 2005 12:18:50 EDT
From: Elizabeth Parcells
Subject: Re: home from surgery

Hi Margaret,

I recall being nauseated after surgery because of the pain pills I had to take, not from the surgery itself.  Take another look at your meds and see if there is any nausea effect there.  Do you have some anti-nausea meds to try? Also, be careful what and how much you eat.  And rest, rest, rest!

Hope you feel better quick!

Elizabeth

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Date: Fri, 8 Jul 2005 16:54:03 EDT
From: Elizabeth Parcells 
Subject: Re: My Angel

7/7/2005 9:40:50 P.M. EST, lambyq@ writes:  I am very sad to report that my precious husband died last week.  He had been in the hospital for 3 weeks and finally came home to die.  He had terrible liver damage from his HAI pump and I am so sorry we ever got it.  But.. "what ifs" and "if onlys" don't change a thing.  He fought a good fight and his suffering is over.  Judy


Dear Judy,

I am so sorry for your loss.  Ah, but the second thoughts! How the difficult decisions and trade-offs still haunt us! But no, you are so right.  Let it be, what was, and look for peace and comfort in what is.  A fight well fought, a life well lived, a husband well loved; those are the greatest values now.  I wish you peace of mind and heart. 

Love, Elizabeth

www.elizabethparcells.com I keep adding music! Dx 07/2003 colon IV Surgery 09/2003 Chemo FOLFOX starting 10/2003 12/03 DVT and PEs 03/04 dropped Oxaliplatin, started Avastin for ten months Break from chemo 01/05-06/05 NY concert, then complications 04/05 TheraSphere treatments to liver 05/05 Bone lesion radiated for pain 06/05 started Camptosar and Zometa 07/05 two years since dx, weak but okay

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Date: Sat, 9 Jul 2005 00:23:59 EDT
From: Elizabeth Parcells 
Subject: Re: Oncologist--What do you wish you had asked?

7/9/2005 12:22:19 A.M. EST, Franrauba@ writes:  Hi Elizabeth:  Even had you asked, I doubt they would have had an answer on how to live with cancer.  How can they know if they have not experienced it.  Yes, they have all the medical knowledge needed to keep us alive thank god, but they have no idea how we live with outcomes of surgery and treatment.  I do feel the chemo nurses have a lot more empathy and can help us surmount our fears and symptoms.  At least that has been my experience.  So I am thankful for this list where we learn so much from each other.  Fran


You are so right.  When I want to learn how to live with this, I come here. 

Elizabeth

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Date: Sat, 9 Jul 2005 21:08:43 EDT
From: Elizabeth Parcells 
Subject: Re: Avastin

Hi Abby, I presume,

I was on Avastin for ten months.  Much like your sister, I am entering my second year and have had the same drugs she has, except the Erbitux, which is probably next item on my menu. 

The only trouble I had on Avastin was its tendency to thin the blood, as I was already taking anticoagulants.  But I had no serious issues with it.  It was one of the "friendlier" chemos, because strictly speaking, it isn't chemo.  I guess. 

They have to tell you about the possible side effects, and scare you out of your wits, because of informed consent.  But the statistics show that the really bad ones are rare.  Keep in mind the possible benefit when weighing the risks.  Getting some more months of life is not a bad trade off for the remote possibility that you are in that small percentage of patients that have serious trouble. 

You decide, but I say go for it. 

Elizabeth www.elizabethparcells.com Dx 07/2003 colon IV Surgery 09/2003 Chemo FOLFOX starting 10/2003 12/03 DVT and PEs 03/04 dropped Oxaliplatin, started Avastin for ten months Break from chemo 01/05-06/05 NY concert, then complications 04/05 TheraSphere treatments to liver 05/05 Bone lesion radiated for pain 06/05 started Camptosar and Zometa 07/05 two years since dx, weak but okay

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Date: Sun, 10 Jul 2005 17:11:57 EDT
From: Elizabeth Parcells 
Subject: Re: Hello out there!

So, um, Nussbaum, tell us a little about yourself. 

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Date: Sun, 10 Jul 2005 19:57:09 EDT
From: Elizabeth Parcells 
Subject: Re: Avastin

7/10/2005 7:46:30 P.M. EST, jaybyrd1@ writes:  You said: "06/05 started Camptosar and Zometa"  I ask:  What is Zometa?

Zometa is medicine for the bones.  I have been having trouble with spontaneous breaks in my ribs because of bone loss and a bone lesion.  This is supposed to help keep the minerals in the bones.  It is not a cancer med as such but I take it for the complications I have because of the cancer.  It is taken thru the port like chemo, maybe that is why I mentioned it along with the chemo. 

Elizabeth

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Date: Mon, 11 Jul 2005 05:53:51 EDT
From: Elizabeth Parcells 
Subject: Those who stand by

Hi all,

Responding to Bari and her husband, it is a major frustration that a person can't do the things he used to.  If you have been the backbone of the family and a pillar of the community it is the hardest thing to give up that status, or shall we say, give up the activities that define that status.  Feeling useful and busy is very important to many people. 

I had an active, hard-working life, ability to focus on a task, to perform well under pressure, and to finish what I started.  Now it has become hard for me to get out of bed.  I find here on the list many more caregivers than patients writing in, am I right? I only mention it because it seems that the caregivers who stand by have more troubling issues on their minds than even the patients do.  I only have to look at my 85 year old Dad who loves me to distraction as he watches me get sicker to see how much anguish this is causing him.  I am in the driver's seat as the patient, concentrating on the road if you will.  It is my passengers on the journey who are suffering emotionally, even more than I am. 

As hard as it is to be ill and in pain, it is harder for them that stand by, "stabat mater." It makes me want to comfort them, to downplay my pain, to spare them.  Matt's pool cleaning urge might be a way of telling you the old, "Don't worry, I'm fine." He is hanging onto what is "normal" for him in an effort to convince you both that things are still okay.  Yet if the tables were turned and you were the ill one, he would be carrying you around in a sedan chair by now!

Well, overdoing things physically when you are ill is not productive.  What use is a clean pool (a metaphor for I'm-okay-you're-okay) if the job causes a serious setback? Far better to let that go and set other priorities.  Isn't it strange, the things we cling to?

I am now realizing that I will not be singing anymore, I had to cancel my master classes at the opera house this summer, no more teaching either.  I'm just not up to it.  That's a tough realization for me.  So I am coping by doing this website of mine, going thru my audio archives and fairly giving my music away over the Internet! Crazy, huh? But putting the music out into the world makes me feel like part of the world again.  I have something to do, and people are responding to me.  It isn't like a concert tour, but almost! I just don't want to disappear!

As our ability to perform mundane, routine tasks diminishes, it would be well to turn our attention to our unique contributions.  Get the family photos out and write on them who, what, where, when.  All those pictures are worthless if no one knows who they are.  Write the story of your life for your family, they may know less about you than you think and they will appreciate it.  Talk to old friends, volunteer, whatever.  But let someone else cook and clean fer-gooness-sakes!

Anyway, I hope you find some good coping skills that make sense.  Tell Matt it's okay to let the pool guys come.

Love,

Elizabeth www.elizabethparcells.com Dx 07/2003 colon IV Surgery 09/2003 Chemo FOLFOX starting 10/2003 12/03 DVT and PEs 03/04 dropped Oxaliplatin, started Avastin for ten months Break from chemo 01/05-06/05 NY concert, then complications 04/05 TheraSphere treatments to liver 05/05 Bone lesion radiated for pain 06/05 started Camptosar and Zometa 07/05 two years since dx, weak but okay

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Date: Tue, 12 Jul 2005 09:39:55 EDT
From: Elizabeth Parcells 
Subject: Re: Those who stand by

7/12/2005 12:13:13 A.M. EST, Blg11960@ writes:  Dear Elizabeth, Thank you for your enlightened post as always.  Whenever I see you have posted I am sure to read because I know I will l learn something wise.  I don't know if I 100% agree with you that it is harder for a caregiver.  To feel lousy for over two years a lot of the time would certainly wear me down on top of the fear of losing the battle (especially with two young children).  My hubby has been so brave and tenacious in his war, willing to do anything to fix things so he can be here for his children.  For him this battle is all about being a dad and he isn't giving up!!!! I on the other hand have been forced to look at my life and evaluate things.  It was a real wake up call!!! Work is much less important, my family is much more precious, nature is so much sweeter, and basically I think I have just changed my "kharma".  It sounds awful to say that there can be positive things that come out of such a tragedy but there can be and for myself there definitely has been a new found awareness.  I appreciate every single good thing in my life and cherish each new day.  Oh and by the way the pool guys are coming this week!!!! Best Regards, Bari wife of Matt

Hi Bari,

You are right.  In a crazy kind of way, good can come of this kind of trouble.  It is a learning experience in life that cannot be learned in theory.  People can't comprehend what it is like to be ill with cancer or to be the loved one of a cancer survivor until they experience it themselves.  And if you are of strong character, such a thing can bring out your best and finest qualities.  You do learn what is really important and you act on your higher values. 

I keep asking myself about these hard lessons; must I learn this the hard way? Well, I'm sure the lesson will stick!

In the good news department, there is always good news.  I am relatively well and mostly pain free, two years in.  Matt seems to be holding his own too, as active as he is.  And I keep reminding myself, I am a fifty year cancer survivor already.  I had a childhood cancer when I was two (Neuroblastoma) back in 1953 when there was no chemo.  It was inoperable, and was treated with the then highly experimental cobalt treatments.  (They don't use that stuff on humans anymore, too toxic!) And I survived!!! The life I have had is due to that miracle alone. 

Cancer IS beatable.  I know it from experience.  The thing that binds us all is our mortal nature.  We all share that.  What really counts is what you do in the meantime.  A challenge like this tests our courage, love and patience, and if we stand tall in our adversity, we have beaten it.  We beat it each day. 

Now isn't that good news? Elizabeth

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Date: Tue, 19 Jul 2005 13:40:51 EDT
From: Elizabeth Parcells
Subject: Re: good news update

7/19/2005 9:52:11 A.M. EST, lfitz@ writes:  wish me luck everyone.  Lynne, Halifax, Nova Scotia, Canada


I wish you luck, blessings, and courage.  Fingers and toes crossed here!

Elizabeth www.elizabethparcells.com CC stage IV dx in July 2003

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Date: Tue, 19 Jul 2005 19:56:06 EDT
From: Elizabeth Parcells
Subject: Re: shower

Hi,

When I had a pump there was lots of extra tubing so I could set it down.  I have a port so keeping my chest dry was a challenge, so I switched to baths.  Everyone's different!

Elizabeth

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Date: Wed, 20 Jul 2005 08:58:06 EDT
From: Elizabeth Parcells <EParcells@AOL.COM>
Subject: Re: blood infections - Who is "me"?

I was going to send this to Bari off list, but couldn't send to her email address, so here goes...

7/19/2005 11:31:11 P.M. EST, Blg11960@ writes:  Matt came home today and just as you said he is beyond exhausted.  My concern is that his ascites has returned and they can't tap it due to the staff.  He is having a tough time breathing and was barely awake all day.  I would hope he could go to visiting day on Saturday but if not I am so glad I went up last weekend and brought the kids home to see him.  I did take the time this morning before I went to the hospital to take an early morning yoga class and I have to say it makes all of the difference for me.  I am so frightened lately that this beast is winning and about being an single parent.  The thought is so overwhelming that I try not to think about it.  I keep telling myself now and forever one day at a time or I will crack up.  Sometimes I don't even know the old Bari anymore.  I never want to put on makeup or get dressed (and I own a great clothing store).  I wonder if I will ever be me again.  I am not sure who that is anymore.  So much has changed.  Thank you for all of your kind words and encouragement.  Love as alway, Bari wife of Matt


Hi Bari,

I am writing off list today for you.  I don't really know you so I hope you don't think I am being presumptuous, but a few things you said got me thinking.  Of course the challenges you face taking care of your husband now and your fears and concerns for the future are foremost in your mind, and there is very little room for "Bari" in there.  That is probably why you say, " I wonder if I will ever be me again.  I am not sure who that is anymore.  So much has changed."

I know that for me, cancer changed many things.  Physically of course, many changes, but also my lifestyle, plans cast aside, career ended, limitations to accept, fears and attitudes to adjust, the list goes on.  It is like the old "me" was just wiped away and I had a whole new identity.  For those around me, the same kind of thing.  They have to accept that I will never be the old "me" again. 

In life, change is inevitable; we get older, we move on, things happen.  But usually it is all part of the forward flow of progress and all to the good.  When changes happen because of a catastrophe like serious illness, they are unwelcome changes, and very fearful things. 

But I try to look at the things that have not changed, what about me is still "me." I still love my family and they love me, I love my friends, especially that special guy of mine, my music, my faith.  I am interested in many of the same things as before.  When I talk with old friends or work on my music (that crazy website of mine has given me a big chunk of myself back again) there are moments when the old me returns, a comforting feeling.  The important things don't change after all. 

You mention the things that are important to you; your children, your business (the clothing store), your fashion sense, your home.  You seem like a person with plenty of independence and your own outlook.  I can't help but think that you will right yourself and sail on. 

The love you have for Matt, the strength you bring, your capacity for love, that is the main ingredient for greatness in your life.  If you can do this, you can do anything.  And you can.  And you do. 

Hard? Hell, yeah!

I send you energy and lots of hugs and encouragement.  And undying admiration. 

Love, Elizabeth www.elizabethparcells.com CC dx stage IV July 2003 Hangin' in there. 

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Date: Fri, 22 Jul 2005 08:41:05 EDT
From: Elizabeth Parcells 
Subject: Re: Steve Dunn

7/22/2005 6:24:00 A.M. EST, katemm@ writes:  Robin has written that Steve's digestive system has shut down.  He will no longer be receiving hydration via IV's or be fed through the feeding tube.  He has been moved to a hospice in Denver.  The doctor expects that he will die within 7 to 10 days.  His parents are with him, along with his wife. 

Steve's site http://cancerguide.org remains one of the best sites for patients who want to take control of their lives.  It's tough and full of information you won't find anywhere else.  His loss is a devastating to all of us. 

Kate

Dear Kate,

This is very sad news, I'm so sorry.  I have visited Steve's site many times.  His no-nonsense approach and information have been very valuable for me, and reflect his unique personality.  I hope his site will be maintained and kept online as part of his legacy and for the good of cancer patients.  A practical suggestion would be for an organization like ACOR to take it on as part of their domain and maintain it with the continuity it deserves. 

I am sorry and extend my sympathy to you and his other friends on the team that supports and empowers so many of us here.  Special prayers for his family at this time.  We are all losing a great friend in Steve Dunn. 

Elizabeth

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Date: Fri, 22 Jul 2005 10:29:01 EDT
From: Elizabeth Parcells
Subject: Re: bone pain

7/22/2005 10:09:04 A.M. EST, rbeckler@ writes:  Any thoughts on the leg pains and the accuracy and value of bone scans?

Ray Age 50, stage II, T3N0M0, sigmoid resection 8-20-02, six months 5fu/leuc ended April 03.   Currently NED pending bone scan. 

Hi Ray,

I began having bone pain back in about January this year, in my rib.  It was mild at first, didn't really bother me that much.  I got through my trip to New York in February, but in March the thing really started to hurt.  An X-ray showed a broken sixth rib on the right side, but there had been no trauma.  When the fracture failed to heal and the pain got worse, I asked about a possible bone tumor.  This was not taken seriously at first.  A pet scan done to evaluate my liver showed inflammation in the area, but was not considered conclusive for a lesion.  A bone scan was also done, but somehow only showed the fracture.  Somehow the bone lesion in my rib was missed until the pain was so horrible I literally could not sit up. 

Scans and tests were not reliable enough in this case to get me treatment for the pain and the lesion in a timely way.  I was finally complaining of such severe pain that a lesion seemed likely for that reason alone and I was finally more thoroughly examined and treated.  The radiologist did a diagnostic CT scan of the area and compared it with the older, pre-fracture scans and was thus able to "see" that a two inch lesion had formed on my rib, probably causing the break and preventing it from healing. 

But the tip-off really was the pain level and the fact that it kept getting worse and worse.  So, you should definitely get the bone scan, which is time consuming but utterly painless.  If it shows nothing suspicious, then probably there is nothing wrong.  However, if you find the pain increasing or becoming really significant (like level 9 or 10) then you have to follow up and ask that there be a more thorough examination. 

All scans are not created equal.  Sometimes they do a series of different types of scans to get the answers. 

My scans did not show the doctors how much pain I was in, I had to TELL them.  It was an important lesson. 

I hope this helps, Elizabeth

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Date: Sun, 24 Jul 2005 18:51:44 EDT
From: Elizabeth Parcells 
Subject: Re: for Allison----purpose of this journey - Soup and a Sermon

7/24/2005 6:30:08 A.M. EST, strongsgifts@ writes:  Sometimes I feel that I am driven to try & make a difference in someone else's life.  I certainly don't want to have to care for someone else fighting the beast.  Does anyone else have this strong feeling that they have been called to this "mission"? Or am I becoming a fanatic?

My thoughts are always with all of you who are still fighting the beast, and with those who are the caregivers.  The life of a caregiver is sometimes thankless, but oh so necessary to the health of the patient and to their state of mind.  God be with you all. 

Sheila, wife of Angel Mike 


Sheila, you are right, and you are not a fanatic. 

Think of poor Cassandra, princess of Troy, beloved of Apollo.  He wooed her with a godly gift, that of vision.  She became a seer and foretold the fall of Troy.  Unfortunately for her, she rejected Apollo's advances, so, unable to take away his first gift, he gave her another.  Yes, she would have vision, but no one would ever listen to or believe her.  She warned her father the King of what was to befall Troy, and would not give up.  At last, she was thrown into the dungeon for being such a pest.  And Troy fell. 

I feel very much like Cassandra. I know what could happen, but will anybody listen?? So I have this nutty website of mine, "giving away" all my music. But on every page there is this star shaped blue symbol.  I call it "Soup and a Sermon." If I lure people onto the site with the songs (remember the Sirens who lured ships to their doom with their compelling singing?) perhaps they will hear the sermon as well as the music. 

Cassandra forgot to offer incentives.  Everyone thought she was a nut.  So you just keep delivering your message and if you save just one life, it was all worth it. 

Love, Elizabeth www.elizabethparcells.com

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Date: Sun, 24 Jul 2005 20:14:30 EDT
From: Elizabeth Parcells
Subject: Re: infection

7/24/2005 9:02:03 A.M. EST, houmeri@ writes:  Tony, my partner, died of an abdominal infection late on Friday night.  Earlier the same day his doctors were confident that they had the infection under control and we were due to re-start chemotherapy in a few days.  Norma

Seize the day, put no trust in tomorrow. 


Dear Norma,

I am so sorry for your loss of Tony, especially as it seems to have been unexpected, since you were still making plans.  It is humbling.  I am thinking about you and wishing you comfort and time to heal. 

Love, Elizabeth

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Date: Wed, 27 Jul 2005 13:01:41 EDT
From: Elizabeth Parcells 
Subject: Re: stable cat scan

7/27/2005 12:30:24 A.M. EST, puckmommy@ writes:  he is still asymatic eating well, aruging with me.  seems like somtimes he is pushing me away.  he says he is getting me ready for the worst....like this is helping me.  is this normal?

joe's wife mickey


Hi Mickey,

It is good that you are involved in Joe's care and helping with decisions.  I am stage IV and am lucky enough to have a dear friend taking care of me along with my family.  Sometimes I feel like it is very unfair to the people I love to be taking up such a large part of their lives to help me.  I think this feeling of guilt is normal.  I have heard lots of people mention the same feelings.  There was one cancer survivor I chatted with online who was living all alone and had no one.  She said she didn't want to bother any of her friends because she was "on the way out" anyway.  There was even a boyfriend willing to help, and she pushed him away. 

This seems to happen a lot.  When you get very sick, your self esteem can go way down and you don't feel like you are "worth it" anymore.  This might be part of the general depression that patients often have when adjusting to their situation.  I have felt this way at times too.  When I was first diagnosed, I told my boyfriend it was time for him to "get another girl." Fortunately for me, he refused to leave me and is now inseparable from me.  The hardest thing in the world for someone who is depressed or feeling a sense of worthlessness is to accept love and help. 

I guess you have to try to understand how he is feeling right now and not take it personally at all.  It is a mood that will pass.  He is in stable condition which is a blessing, giving you quality time together now.  If you concentrate on now and try to avoid dwelling on what's coming, you can enjoy happy times together. 

Make sure he knows that you have made your own freewill decision to be with him and to take care of him because that is what YOU want.  He is concerned for your welfare, so he needs to be reassured that this is what is best for you, to stay with him.  Then things will seem much more okay. 

Good luck to you both on your journey, Elizabeth

------------------------------------
Date: Sun, 7 Aug 2005 19:37:10 EDT
From: Elizabeth Parcells 
Subject: Fatigue and other lifestyle adjustments

Hello,

I've been reading about the various questions about fatigue brought on by chemotherapy.  In some posts, I am amazed at patients who continue their patterns at work and at home almost as if nothing had happened and complain that they need to nap more often.  Or how they can't fit in as much golf as they used to, or how they struggle to continue waiting on their spoiled men, doing laundry and cooking and housework.  What a picture! Mom's got cancer, the men are still stretched out in their Laz-e-boys, and expecting dinner right on time.  The accusation of "laziness" really got my goat.  How deep does denial go?

My own experience with chemo has been that the more I fight it, the worse I feel.  The first treatment of FOLFOX I received did not cause me all the dreaded side effects right away, so I got over confident and resumed normal activities.  Soon I realized my mistake.  Pushing beyond a certain point caused me to vomit, feel faint, dehydrate, spike a fever, nasty stuff.  I asked the nurses again to explain to me how to behave on chemo.  This time I listened carefully. 

The goal here is to get well, if that possibility is in your prognosis.  In the meantime, a cancer patient in treatment must accept that they have a serious condition and must care for themselves accordingly.  Rest and more rest is the most obvious change in the daily pattern.  Dietary and eating patterns, drinking LOTS of fluids, reporting side effects to the doctor and paying close attention to what your health providers advise and then following it.

If the people around you do not fully grasp your situation, or cannot accept the changes in your life, you may have to give them time.  But you can't let them influence the way you take care of yourself.  I have brothers, so I know how they can be, LOL, I have told them many times not to give me chores anymore, but they want the old times back, and their behavior pattern toward me will not change anytime soon!

Well, those are my thoughts on that.  Fellow cancer patients, we are on our own.  Take good care of yourselves!

Elizabeth www.elizabethparcells.com Dx 07/2003 colon IV Surgery 09/2003 Chemo FOLFOX starting 10/2003 12/03 DVT and PEs 03/04 dropped Oxaliplatin, started Avastin for ten months Break from chemo 01/05-06/05 NY concert, then complications 04/05 TheraSphere treatments to liver 05/05 Bone lesion radiated for pain 06/05 started Camptosar and Zometa 07/05 two years since dx, weak but okay

--------------------------------------------
Date: Mon, 8 Aug 2005 02:10:50 EDT
From: Elizabeth Parcells 
Subject: Re: Fatique and other lifestyle adjustments

8/7/2005 7:57:28 P.M. EST, akingston@ writes:  OK< I am thinking I probably misinterpreted your email now that I read it again.  So anyway, am gonna post this regardless.  I feel better for giving myself a RAH RAH speech. 

Take good care of yourself... Allison


Hi Allison,

You are an excellent fighter and full of good spirit and lust for life.  You are right to pursue your activities as best you can.  I do the best I can too.  I try to keep busy with something appropriate.  When I overdo it, I get the receipt immediately.  I did a concert in New York in February, skipping two months of chemo to be able.  After that occasion, which I do not regret for an instant, I took a terrible downturn which I am still paying for.  Last week I produced a fundraiser event with plenty of help, but three days after that was headed for the hospital again with severe bone pain. 

I think I am pep talking myself as much as anyone, because I know both sides of the issue.  I am the worst offender in the overdo department, and yet, have had to learn serenity to rest and recuperate from my excesses.  I don't do any daily chores and am hardly able to care for myself without help, but NOBODY calls me lazy!! I am cautioning myself and others not to sacrifice their health for the wrong reasons.  If you are going to indulge in over activity, at least make it count!

This fight is a fight to the finish and I will never give up until they wheel me away.  Still, there are times when I have to back off and take it easy.  No use being unreasonable. 

I wish you worthwhile and fulfilling times, and the rest you need to achieve your goals.  I am glad you are doing well. 

Elizabeth

--------------------------------------
Date: Tue, 9 Aug 2005 13:14:48 EDT
From: Elizabeth Parcells 
Subject: Re: Fatigue and other lifestyle adjustments

8/9/2005 10:15:17 A.M. EST, sherrimcfarland@ writes:

I feel lazy


Banish that thought! Right now. 

That is my message.  You are engaged in a battle that takes every ounce of your strength to win.  You are fighting the worst beast with all your might, so no wonder you are too tired to cook dinner!

Lazy, my A&&!

YOU are a HERO!

Love, Elizabeth

-----------------------------------
Date: Wed, 10 Aug 2005 17:16:39 EDT
From: Elizabeth Parcells 
Subject: Re: Fatique and other lifestyle adjustments

On the juicer thing: I tried it out but found the reason I did not tolerate the "healthy" juice was because it was raw.  I actually do better with watered down, pasteurized juices I have been told are not as tasty or as nutritious as the juicer ones.  So I gave away the juicer and went back to OceanSpray. 

Hope this helps, Elizabeth

-----------------------------------
Date: Sat, 13 Aug 2005 14:58:44 EDT
From: Elizabeth Parcells
Subject: Update on "her"

Hi all,

When I talk about my situation, often I feel like I am talking about someone else.  So I am writing in as my own caregiver in the third person. 

Update on Elizabeth:

I have reported on what Elizabeth had been dealing with recently, and here is an update.  She has been having terrible bone pain from a lesion in her right rib, which actually broke a few months ago.  Now her upper spine is hurting, and a lesion to her 7th and 8th vertebrae was seen on a recent bone scan.  She is now being treated with radiation for both spots.  Unfortunately the radiologist has noticed other spots on the bones forming as well.  This will be a continuing problem, looks like. 

The overview is this: Doctor says that the spread to the bone indicates that the cancer was present years before it was diagnosed two years ago, since the bone involvement is usually seen in "older" cancers. 

Two months ago she started on Camptosar alone after FOLFOX and Avastin had failed.  The most recent CT scan shows that there are again new spots on the liver and lungs, so that this chemo appears to have failed as well.  The Oncologist is preparing to add Erbutux to the Camptosar in hopes of some benefit. 

Elizabeth is in a lot of pain and feeling discouraged.  It is hard to know what to say at this point.  On Tuesday she will meet with the oncologist to discuss options, but she is worn out from the chemo which has not been helping her for close to a year.  Bone pain is very bad, and hard to control.  Add to this that she is one of those patients who simply can't tolerate opiates or morphine, and treating this pain with Tylenol and Advil feels like pelting peas at a tank.  Her feelings become easy to understand, and harder to console. 

A clinical trial would be appropriate to consider, but as long as she is in radiation treatment, she is not allowed to take chemo or other treatments.  The radiation is helping, thank goodness, but she is far from comfortable. 

The list of frustrations grows.  She is already living on "bonus" time that the treatments up til now have given her, but the sinking feeling that time is running out is hard to escape.  She keeps busy at her computer and has visits from friends.  There is life but very much limited compared to life before.  Big challenge is to stay positive and focused on feeling better. 

Well, I wish there were more that I could do for her, but this thing is running its course and is bound to be difficult at times.  Any thoughts on ways to treat the pain? Anyone else dealing with bone mets? Any trials available in Michigan for such a case?

Regards, Elizabeth, caregiver to Elizabeth... 

-----------------------------------
Date: Sat, 13 Aug 2005 20:13:00 EDT
From: Elizabeth Parcells
Subject: Re: Update on "her"

Hi Kate,

Back to writing as myself.  I am not allergic to the opiates, but they make me very sick.  I have tried a number of variations, like Vicodin, Darvon, Oxycodone, Morphine sulfate, even Tylenol 3.  But each time, within 48 hours I am so constipated that I can't eat, and throw up when I try.  This resolves itself only when I quit the med and do a water purge (I drink lots and lots of water until the bowel moves.) Stool softeners and laxitives just don't work against this.  With an ostomy, no fun. 

So I have given up on the opiates.  There was one suggestion from a compound pharmacist that I use a morphine nose spray that bypasses the whole GI tract.  Ever heard of this?

Fentanyl and Biphosphonates I have not tried yet.  I am ready to head for a pain clinic on this one though.  The pain has me immobilized. 

Today was my niece's 5th birthday and I nearly missed it because of the pain.  Finally I took something stronger so that I could at least sit in a reclining chair and watch the fun.  But it was hard to see the looks on the adults' faces as I struggled to my seat.  They know I have cancer but were disturbed to see me in such pain.  No way was I missing the party.  Little Claire and I have a bond and she was overjoyed to see me.  Besides, never break a promise to a five year old!

I will consult with pain specialists next week, promise.  This is chasing me out of my own body, so I do feel like I am someone else, not me.  The loss of mobility is very difficult too.  I need help with every little thing. 

Thanks for being there to listen and help.  I am very glad my music helps you.  It gives meaning to my life. 

Love, Elizabeth herself. 

www.elizabethparcells.com  Dx 07/2003 colon IV Surgery 09/2003 Chemo FOLFOX starting 10/2003 12/03 DVT and PEs 03/04 dropped Oxaliplatin, started Avastin for ten months Break from chemo 01/05-06/05 NY concert, then complications 04/05 TheraSphere treatments to liver 05/05 Bone lesion radiated for pain 06/05 started Camptosar and Zometa 07/05 two years since dx, weak but okay 08/05 struggling with severe bone pain from lesions

-----------------------------------
Date: Sat, 13 Aug 2005 20:15:36 EDT
From: Elizabeth Parcells 
Subject: Re: Update on "her"

Hi Lora,

You mean Ativan, a med intended to help with physical anxiety caused by pain, or to control seizures.  It does make one very sleepy, but for a rest from the ravages of the pain, it is probably worth it.  Thanks for the reminder.  I still have a bottle of it in my medicine "bone yard."

Love, Elizabeth

---------------------------------
Date: Sun, 14 Aug 2005 15:03:57 EDT
From: Elizabeth Parcells 
Subject: Re: Update on "her"

thank you julia, I will consider this.  I hope to get with a pain management specialist real soon.  Right now I manage by lying flat and not moving. 

Thanks again for the info. 

Elizabeth

-------------------------------
Date: Tue, 16 Aug 2005 08:21:54 EDT
From: Elizabeth Parcells 
Subject: Re: Update on "her"

Hi to Kate and Lora and Julia, Sharon, Erika, Deborah, Jenny, and friends,

Thank you for your supportive and informative posts to me.  I am working on all the options you suggested, including adding some safety equipment to my bathroom and environment.  It is becoming hard for me to move around and getting up and down on the toilet is only one of the problems I have.  For now it turns out I have a lesion on my right femur too which pains my leg.  The doctor says he doesn't like bone lesions on weight bearing bones because they tend to fracture over time and that is bad news. 

I am becoming suspicious of every bony ache I have these days.  Right now I am handling the pain with a combo of Tylenol and Advil, which obviously are not strong enough for the breakthrough pain when I move around, but keep me comfortable at rest.  As this thing progresses, I know I will need stronger help.  My problem is that I hate drugs even more than I hate pain.  Stubborn me again. 

So I am still going into radiation oncology for treatments daily.  Only yesterday a curious thing happened at the hospital: I couldn't get treatment because the computers were down with some virus! In fact, all the radiation treatment machines were rendered useless, including the ones at other satellite facilities in the entire health system of the main hospital!

Only a few months ago the health system had proudly announced the implementation of a unified health data web that connects all their clinics and hospitals under one networked computer system, allowing comprehensive data access by doctors to patients within the system.  You could get a scan or X-ray at one place and the doctor or doctors could all see it on their computer screens moments later from anywhere else on the system.  Sounded great at the time.  But don't' we know how finicky and volatile computer networks can be!

Probably some kid somewhere thought it would be fun to hack the hospital's wonderful new system and show 'em where god lives.  Well, the only fail-safe is to keep paper charts and make sure you can still do your work with a pencil and a flashlight.  And most hospitals have backup generators.  I think the IT people at the hospital had better build in a fail-safe for computer viruses.  It is as terrifying as the blackout two years ago that rendered the hospital nearly useless, forcing the cancellation of my initial surgery!

Meantime, there I lay on a stretcher waiting for the computers to come back up, and finally had to give up and go home untreated.  It's not a perfect world yet, I guess. 

Ah well, we will do the best we mere mortals can.  Gosh, if it weren't for this pain, I would feel pretty good.  Sigh. 

Cheers, Elizabeth

----------------------------------
Date: Tue, 16 Aug 2005 08:25:11 EDT
From: Elizabeth Parcells 
Subject: Re: Update on "her"

8/15/2005 7:20:07 A.M. EST, angels@ writes:  Elizabeth, do you have a port/line/catheter that was surgically placed?

Julia


Yes, I do have a port. 

Elizabeth

-----------------------------------
Date: Fri, 19 Aug 2005 12:32:00 EDT
From: Elizabeth Parcells
Subject: Re: Update on "her"

Dear Karen,

That is a sad story about your grandmother.  It is awful to think back and wonder why one stayed away from a real doctor for so long.  We don't want it to be true that we are sick, we avoid, we procrastinate and bargain.  But cancer will not be bargained with. 

I have a sister who believes very strongly in diet and vitamins and essential oils and antioxidants to keep her safe from cancer.  She refuses even to be tested or to get a physical from a real doctor for that matter.  I don't think she has had a physical in 25 years! What a waste of a health insurance plan if she won't even use it.  I have talked myself blue in the face but she won't listen.  Of course, I have not taken any of her potions either and she is sure she could "cure" me if only I would.  This difference between us has not cost us our good relationship, but we have been angry at each other over it many times. 

I hope she "gets away" with it and never gets sick, which she will believe was due to her regimen of special compounds, not the grace of God.  She will believe that I died because I refused to take her Wolf berries and gannodermas.  Whatever.  But oh, I shudder to think what \will become of her if she does get sick!

So it is a terrible price to pay for our procrastination and inattention to go thru a serious illness.  I feel that I too am a sad example of this, having been diagnosed too late. 

The situation in my bones is a clear metastatic spread of the original cancer.  Since I am being monitored carefully, I don't think the bone lesions will have a chance to cause the kind of trouble your grandmother had.  But I will of course step up my vigilance.  Unlike my sister, I believe the "real" doctors can do a lot to help me.  My radiation treatments to the bones continue and on Monday I am scheduled to begin Erbutux as a single agent, adding the Camptosar back in when the rads are done.  Apparently, rads and camptosar don't mix. 

I am still laid up with the breakthrough pain in my back when I try to sit or walk.  I am comfortable at rest at least.  The daily treks to the hospital are a painful chore.  They wanted to admit me, but I would far rather be at home.  I am having an MRI of my spine done on Tuesday next which may shed light on this persistent pain.  But Opiates are still OUT. 

The three most important quality of life elements to me today are the ability to 1.) think clearly 2.) eat well and 3.) defecate same.  The opiates make it impossible for me to do any of the three! They befuddle the mind, constipate and cause me to be unable to eat.  Being laid up in bed is not so bad as that!

So I struggle along with my condition and my tough choices.  My care is good, but I don't want to hear the doctor say again, "I can only help you if you let me," when I continually refuse to take certain meds that make me sicker.  We had a pact from the beginning that I make my decisions and the doctor has to respect that. 

Onward Christian soldiers, marching as to war!

Love, Elizabeth

--------------------------------------
Date: Sat, 20 Aug 2005 06:05:06 EDT
From: Elizabeth Parcells 
Subject: Hope - Pandora's other box


Hello friends,

Upon reading the latest posts from Andrea and the responses to her, I am moved to mention Hope again.  It seems a strange thing to bring up when we all know that the situation is "hopeless" meaning that someone is dying, and suffering for it.  It all seems so senseless and cruel.  I myself am a "hopeless" case, meaning I have no hope of surviving this disease in the long or short term.  It is "hopeless" that I will die of old age or something else.  I am being confronted by the certainty of my own death by cancer at an age when most people are still looking forward to long and productive lives. 

I know that whatever anguish I am going through over this is compounded by the pain of those who love and care for me.  I feel their pain along with my own.  I try to be brave for them, show them I am "okay" and "fine" and all those polite, but often untrue reports we give of ourselves.  The standard "How are you?" has become such a loaded question.  "Do you REALLY want to know?" I think, and then simply say, "okay."

I am far from okay.  And when the pain is bad and I am feeling sick, sure I start to think about something "better." That's where Hope comes in.  I hope to feel better, for relief, I hope there is help for me to better deal with my illness.  And yes, in the wee hours of the night, I sometimes hope that the great last sleep will come with sweeter dreams and greater peace than I can imagine now.  What manner of sleep it is, that is a matter of Faith.  But how restful it will be, that is a matter of Hope. 

Yes, I think of that more often these days.  But what of survival, the preciousness of Life, the will to live? Don't worry, we are all endowed with a very strong will to live that gets us through many a trial.  I know I will sleep the great sleep, but I also Hope that I will stay "awake" for a good while longer! I do not contemplate ending my life before my time.  That would be the ultimate act of hopelessness. 

We are all mortal, and will face death.  In the meantime however, Hope is our greatest survival tool. 

When Pandora opened her box and released all the evil into the world, human life threatened to become unbearable.  But there was another box, remember? In that other box was sweet, sweet Hope.  Hope came into the world to be there for us no matter what.  It accompanies us through all our darkest hours, urging and comforting. 

To be human is to hope for something.  The big three, Faith, Hope and Love, are what make our lives meaningful and spiritually joyful.  Faith against despair, Hope against pain, and Love against chaos.  I don't think that any specific religion has a corner on this concept, though many religions teach it.  These are qualities of the human soul that no one can take away from you, without your permission. 

Sorry for the sermon.  I want to be helpful in focusing on the things that can make us strong in the face of such adversity.  I would never impose my beliefs on anyone, but there is this thing called the "human condition" which all of us share, no matter what else we believe. 

With Hope, Elizabeth

www.elizabethparcells.com

---------------------------------
Date: Sat, 20 Aug 2005 12:31:52 EDT
From: Elizabeth Parcells 
Subject: Re: Hope - Pandora's other box

Dear Kate,

Yes, hope changes.  What we learn is to hope for "little" things which turn into big things as they become more important to us.  Wasting time and energy on lost causes, like graying hair, is cast aside as we focus on higher priorities.  We learn what those are as we go along. 

Anger wastes time and energy too.  While I am that angry, I am no help to anyone around me.  Any of the destructive emotions can take away the ability to move forward and be constructive.  Anger can motivate us to do something about or remove the injustice.  But helpless rage against something we can't change or help is crippling. 

To see your friend Donna at the reunion will be a joyous thing, but not if you were angry at her fate.  That would only cloud the happy occasion. 

Don't get mad at the mountain, climb it, or mad at the ocean, cross it, or mad at the illness, live with it.  Hope to climb, hope to cross and hope to live. 

My next goal is Christmas.  I hope the Erbitux will help me, I hope to get rid of this pain, and I hope for more quality time with the people I love.  My hope is ambitious, but not impossible. 

Thank goodness Pandora opened the other box!

Love, Elizabeth

----------------------------------
Date: Sat, 20 Aug 2005 13:12:27 EDT
From: Elizabeth Parcells 
Subject: Re: Hope - Pandora's other box

8/20/2005 7:07:26 A.M. EST, andrealev@ writes:  Dear Elizabeth, your message is very true.  I wish I could comfort people right now, but i cant even comfort myself.  hopefully that will come.  I hope every day of my life that a new drug will come on the market that could save and extend precious lives for any kind of cancer.  I dedicated my life to helping my sister Sharon who has recurrent colon cancer with it spreading even though she is on cpt11 and erbitux.  she still has such a positive outlook on life.  I'm actually trying to learn a little from her, but I am so afraid.  I had hope for a while, but every time I did, something would dash that and it would be gone.  I wish for you all better days.  you are in my thoughts and prayers all the time.  Andrea



Dear Andrea, You see, there is hope in your message in three places.  Those are worth clinging to.  Hopes can be dashed, and that is painful.  We think if we stop hoping then we will not be so disappointed.  This is a mistake.  Hope and hope again.  Thank you for hoping for better days for me, that is my hope too.  There may be worse days, but I sure don't hope for those! Don't give up on hope.  If one hope is vain and gone, it is replaced by another.  Fear is the enemy of hope.  Ask yourself, what are you really afraid of? Facing the fear can make the fear less intense.  We fear what we can't understand, can't see.  By facing it, we can break it.  Then hope blossoms forth again.  You do hope, I can tell, it is the fear you have that holds you back.  You can learn from your sister, because she sounds like someone without fear.  She can tell you how she can be so positive in spite of her situation.  Better yet, she can show you.  I hope you will find hope again, courage and peace.  These are not clichés, and even if they are, I hope they help you anyway.  Happiness in this life is right between the ears.  It is our thoughts and feelings that are either happy or unhappy.  Finding a way to be in a positive state of mind is the key to happiness.  No one escapes the sorrow and grief of loss, or the pain of watching suffering, and we would be cold and heartless if we did.  The lowest insult of all is to be thought inhuman.  Life doesn't always go our way, we do have loss and pain, and yet somehow it is always worth living.  Existence can be worthwhile even in unhappy times, as Emily Brontë once wrote in her poem "Remembrance": "And when the days of golden dreams had perished, and even despair was powerless to destroy, then did I learn that existence could be cherished, nurtured and fed without the aid of joy." If you feel, strong emotions, then you know you are alive.  And human.  Love, Elizabeth

------------------------------------
Date: Sat, 20 Aug 2005 22:57:57 EDT
From: Elizabeth Parcells 
Subject: Re: MY Dave


Dear Debby,

I am so sorry.  May you find comfort and peace in the time to come.  You are in my prayers tonight.

Elizabeth

-----------------------------------
Date: Thu, 25 Aug 2005 12:35:38 EDT
From: Elizabeth Parcells 
Subject: Re: Elizabeth

8/25/2005 2:16:55 A.M. EST, moods68@ writes:  Hi All, has anyone heard how Elizabeth is? My thoughts are with her.  I miss her inspirational messages,even when she herself was feeling at her worst.  Hope your still being strong, Luv Karen


Hi Karen, Hi all,

I'm okay.  But I have not been able to come online because of my worsening bone condition.  Monday morning I woke up seeing double.  I was very concerned and upset.  I was at the radiology that afternoon and could speak with the doctor, who also showed concern, but after interviewing and examining me said it was probably some bone involvement at the base of the skull pressuring an ocular nerve responsible for the movement and tracking of the eye.  He recommended a head MRI be done immediately if not sooner. 

I was given an appointment for Friday, which didn't seem soon enough, so I bargained with MRI saying I was willing to come in at any time, after hours, at night, whatever.  Otherwise the doctor was going to admit me.  I had the MRI at 10 PM that night.  I had a spine MRI the following morning, so the doctor had both reports quite presently.  Yesterday, the head and my left shoulder, which is hurting me, were CT simulated to pinpoint the areas of treatment.  Pinpoint literally, with little tattoo marks made for accuracy, ouch.  I got one of those cool mesh masks they make of you to keep your head in position.  It felt like a hot facial.  Freaky.  So Friday the new treatments will begin.  I have been in radiology daily for over two weeks. 

Meantime, the oncologist sees progressive disease in spite of systemic chemo, meaning the Camptosar has failed.  He started me on Erbitux alone on Monday, saying he will add the Camptosar back in after radiation treatments have stopped.  It seems that this combo raises the effectiveness of both drugs, even after Camptosar fails. 

The bone lesions are moving fast, from the chest wall, diagnosed in March, to the spine, and now left shoulder and two places in the skull.  There are more lung and liver spots to report, though the old ones treated with TheraSpheres have not grown. 

Clinically, I am in bed mostly now except for my outings to the hospital for treatment.  The aches and pains are bearable, but coupled with the disorienting double vision, life is tougher than it was.  So here I sit with one eye patched so I can see with the other one, juggling my side effect meds and trying hard to be cheerful for my little niece who is visiting me with her parents from New Jersey.  She just turned five. 

Darn this sucks! I try not to think ahead, since things seem to turn some other way I don't expect anyway.  Good news, I guess, is the doctor said the brain itself isn't involved "yet." He could have left off that last little word...  I sure pick up the signals the doctors and techs send out subconsciously, even though they are trained not to say too much. 

So, you could say, I have a feeling in my bones...  feeling my mortality, thinking it is wonderful to be alive in spite of everything, but looking ahead to the Hope I have of Faith in that timeless time to come.  It is a matter of perception whether you think you are losing ground, falling, declining, or moving forward, upward towards some great anticipation, scared but curious to know, where or what the goal is. 

I am in good spirits and comfortable, wish I didn't have to go in to the hospital so often.  They haven't managed to snare me into a hospital bed or convince me to take meds I don't like or want.  They use all kinds of persuasion but I stand firm.  I want to Think Eat and Poop. Of course eyesight would also be nice... "But they'll never break me!!!" I scream.  I'm doing things my way.  Stubborn like I am. 

Sorry I was radio silenced for a while, I can't sign on so often as before.  Hope all of you are doing okay. 

Love, Elizabeth

---------------------------------------
Date: Fri, 26 Aug 2005 08:47:48 EDT
From: Elizabeth Parcells
Subject: Re: Treatment for bone mets

Hi Kate,

I have printed out your info on Boniva and will ask my doctor about it on Monday.  Thanks!

Elizabeth

--------------------------------------
Date: Sat, 27 Aug 2005 07:58:24 EDT
From: Elizabeth Parcells <EParcells@AOL.COM>
Subject: Re: Mets to Lungs - Same Boat

8/25/2005 10:42:01 P.M. EST, esther.hart@ writes:  I still don't know what to do...  I will explore a few more avenues for a second opinion but I do have a fair amount of trust in my oncs as according to the WHO, Canada is the number one country for dealing with colon cancer and the work done at PMH is at the core of that. 

I feel like I am trying to buy some time before or at the end of chemo.  If that were to be the case, I think I would have it before.  I was to stay positive, but the news is fresh and I am still reeling a little and trying to get a grasp on hope.  I have lost trust in my intuition for the first time in my life! My onc said that she has never seen a Stage IV cure.  Some people survive months, some years, the average is 2 years from diagnosis.  I would be happy to live long enough that my daughter has a memory of me (a few more years), which is on the optimistic side of the stats.  Well, no, I lie.  I want it all.  I want to be in that 5%!!! It is just feeling very elusive to me, not realistic, given the aggressive nature of my disease.  So, what to do with the time I have? It is hard to say when I have no idea what the timeframes for any of it (pre-chemo, chemo, survival) will be! At the moment, I am going to take the advice to prepare for the worst and hope for the best.  Just getting through the latter part of the plan is very hard to do! But I will fight, and maybe Erbitux will be approved in Canada by then!

Andrea Leventhal and Erin Jacobs (and anyone else with lungs mets): I read your posts with keen interest but cannot help either of you right now as I am not as far down the road but lets keep each other informed!

Esther: Age 37, dxed 5/04, Stage IV C/C, 6 mo.  FOLFOX, mets to lungs, waiting for treatment I intend not to be threatened by a life-threatening disease, but to live a disease-threatening life. 

Dear Esther,

Your message below really hit a chord with me.  We are indeed in the same boat.  Losing trust in your intuition is a devastating loss of control.  I too am at a loss to know what to do.  I have Stage IV CC with mets to liver, lungs and bones, which are being treated as they become symptomatic which is clinical speak for painful.  There are no treatments being tried with any curative intent, because there is no cure for unresectable stage IV. I am already two years in and starting to feel the full effect of this cancer on my life. 

You have a good outlook in that you are honest with yourself about your situation.  Like me, still hoping to beat the median survival time by a good margin, but all too well aware that this is not an old age plan.  I give my little niece the "biggest hugs ever" and trust in the future for her (I have no kids of my own) but wish I could stick around to be more a part of her life and growing up. 

I am taking Erbitux now, which doesn't negatively interact with the radiation I am receiving to control pain in the bones, but have no guarantee that this will be effective.  The whole thing starts to look bleak at this point, which, as you say, makes it double hard to keep Hope alive. 

Up to now, I have tried not to ask the "how long" question, but as the goal posts get closer, it is natural to want some kind of "timeframe." No one can say with any accuracy "when." We hear it every day on this list, "My doc told me x months, and here I am x years later, still here." Just because you fool the doctor, doesn't make the doctor a fool.  We all would love to fool the doctor on this matter.  We take courage from the ones who have and hope to be like the long term survivors. 

Preparing for the worst is prudent for all people not just sick ones.  How many people are surprised by a sudden demise with no more chance to prepare as they should have.  It is a good feeling to know that whatever comes, your affairs are in order.  I am at least glad to have had "fair warning" to take care of that. 

I am also glad to hear that you trust you Onc and doctors.  But waiting for treatment? Erbitux not yet approved in Canada? That would be a subject to make some noise about.  Perhaps a letter to your Rep or a petition? Anyhow, you are not the only Canadian "waiting for treatment" it seems. 

I can tell from your last line that you have a fighting spirit.  Again, same boat.  Keep that spirit, I wish you the very best and commend your courage. 

Love, Elizabeth www.elizabethparcells.com

-------------------------------------------
Date: Sat, 27 Aug 2005 22:22:46 EDT
From: Elizabeth Parcells
Subject: Re: My daughter

Dear Gene-Paul,

I am so very sorry.  A father has a special bond to a daughter, so I am particularly sorry for your loss.  I hope time will help you find comfort and solice in your memory of her.  You are in my thoughts and prayersIAs a daughter, I feel for you.

Love, Elizabeth

---------------------------------------
Date: Sat, 27 Aug 2005 23:50:18 EDT
From: Elizabeth Parcells
Subject: Re: Pain


8/27/2005 10:28:45 P.M. EST, gsalls writes:  I ask this question as I just wrote that my daughter died a few days ago from breast cancer.  The question is .  She was in severe pain through out all the surgery , treatment and was having a morphine pump installed the hours before she died.  Is there any reason NOT to get the patient pain free. 

As you all know I have a bunch of cancers and have had all the surgeries , including double back fusion and in all the years was kept free of pain.  I now take, morphine 160 mg.  2X day.  and am pain free.  They did not do this for Leigh and said to my self there must be a reason why they did not do the same for Leigh.Please let me know.  Thank's ............Gene-Paul

Just to add this to my medical history .I am now a member of the Paralyzed vets of America.and use a power chair most of the time to get around. 

..Dancing on a dime.. the junk yard dog

Hello again Gene-Paul,

One of the biggest attitude adjustments of recent years in the medical field is the approach to pain.  Long ago we patients were told to bear up, and too often the pain was not treated, even when the patient desired it.  I experienced this first hand at the age of nine with my childhood cancer. 

Today there are whole pain management departments with specialists and a growing acceptance of so called alternative pain treatments at modern hospitals. 

I have been offered pain management at every turn.  Though I have tried many different meds, including morphine and several of its variations, I have had bad reactions to every one of them.  Severe side effects have forced me to refuse all opiates.  Although post surgery the morphine helped me, I do not tolerate a longer term usage of it. 

I do not know anything about your daughter's situation.  But I am quite sure she was offered pain management as I was.  It may be there was some other medical reason why the pain management part of her treatment was unsatisfactory or less effective than hoped for. 

It is very hard, I know my own father is having a hard time witnessing my decline and pain.  I wish I could spare him all this, but I live at home with him so it's tough.  He is 85, has a slow moving Lymphoma himself, but is one of the strongest people I know.  For his sake, I would love to be pain free.  But the promise of freedom from cancer pain is not always fulfilled.  I still have trouble with pain management in spite of all the solutions I have been offered. 

So, no there is no reason not to address the pain but like so many things about this disease, sometimes it doesn't work to our satisfaction.  I don't have a better answer for you than this.  In time, you may gain wisdom or find the information you seek to better answer your question. 

I wish you well and hope you find peace.  Elizabeth

-----------------------------------------
Date: Sun, 4 Sep 2005 11:18:58 EDT
From: Elizabeth Parcells 
Subject: Re: MY FIRST MATE SAILS ON AHEAD

Dear Harry,

Thank you for your post about Bella's passing, letting us share her final time with her family and her peaceful passage.  I am so sad for you at this time, you know I will pray and think of you along with so many of your friends.  Bella was a great fighter.  The extra time you had with her was a great gift of sacrifice and love. 

It is good to know that you will stay with us on the list where we can continue to offer each other friendship and support.  I wish you comfort in the coming days. 

Love, Elizabeth

-------------------------------
Date: Fri, 9 Sep 2005 17:28:13 EDT
From: Elizabeth Parcells 
Subject: Re: Janet- stage IV survivor

9/9/2005 9:22:45 A.M. EST, lfitz@ writes:   Are there any more stage IV out there who are still living?? Best regards Lynne

Yes Lynne, there are.  Me, for instance.  Still trying to make sense of it all, seeking sense where there is none.  Since the doctors spoke with me at diagnosis in August 2003 and "explained the incurability" of my condition, it has been a campaign for more time.  That is what survivorship is all about. 

I would say, 150% of life is being there.  And living is about time, time to be and interact with your loved ones, time to put things right, time to make your stand and your peace.  Cancer, even late stage, used to be a sprint, now it's a marathon.  Ever heard of "Heartbreak Hill"? It has been the despair of many a Boston Marathon runner, and yet the champions have the heart to finish. 

Survivorship with late stage illness is the true test of what you believe in, what is important to you, and what you fear.  You learn a lot about yourself at a time like this.  I dare say you learn some things about the people around you as well! You can't let yourself get into "anyway" mode, like I am dying "anyway" so what's the use.  That is akin to despair, the end of any capacity for happiness in life no matter what your circumstances. 

It sounds trite but yet is so true: One Day At A Time. 

So, yes, living and life go on with stage IV because they must.  Even with the finish line coming into view, the race is not over until you get there. 

Thanks for listening to a weary runner.  Love, Elizabeth

---------------------------------
Date: Fri, 9 Sep 2005 18:01:37 EDT
From: Elizabeth Parcells 
Subject: Re: Buddy Bracelets Work!

Hi Fred,

Bravo! You are right.  I have a few similar stories since I began handing out bracelets.  Sometimes we can save a few, and that feels really really good. 

Love, Elizabeth

--------------------------------
Date: Sat, 10 Sep 2005 10:32:40 EDT
From: Elizabeth Parcells 
Subject: Re: GREAT day for Canadians!

9/10/2005 9:26:34 A.M. EST, esther.hart@ writes:  Hello All! Go out and grab a Globe and Mail newspaper, turn to page A6 and read the great news... Erbitux and Avastin are approved by Health Canada!!!

HOORAHHH!!! I have been so worried for our Canadian neighbors dealing with the shortfall of treatment options.  I am so glad to hear this great news!

Elizabeth

-------------------------------
Date: Sat, 10 Sep 2005 10:57:12 EDT
From: Elizabeth Parcells 
Subject: Re: my Matt is at peace

Oh, Bari,

I add my condolences to those of your many friends and loved ones at your loss of Matt.  Your message is full of love and consolation, speaking of how he did it his way, peacefully.  After all you and he have been through, this is a blessing, and tells of a good and just life.  I hope this knowledge sustains you as you face life on your own. 

Love, Elizabeth

9/9/2005 6:07:12 P.M. EST, Blg11960@ writes:  Dear Listmates, It with my heavy and broken heart that I let all of you know that my husband Matt passed away yesterday at 3:30 in the afternoon peacefully in his own bed.  My children and I let him know that we would be okay if he let go and soon thereafter within minutes of me taking my son to basketball practice (5 minutes) from home he passed.  I think that he did it his way and the peaceful look on his face that appeared after he died was something that had been absent for so long.  He will be so missed but it was his turn to have his peace.  He fought so hard for 30 months with this dreadful beast for his children and myself and now it gives me a sense of calm that the suffering his suffering is over.  I could not have ever gotten all of this without all of the kindness and support of this amazing list serve and I thank all of you from the bottom of my heart.  Love as always, Bari wife of Matt

-------------------------------
Date: Mon, 12 Sep 2005 09:03:16 EDT
From: Elizabeth Parcells 
Subject: Courage

9/10/2005 11:04:37 P.M. EST, Blg11960@ writes:  Dear Elizabeth, As I sit here teary eyed over the fact that I have to bury my beloved Matt tomorrow I am, as always inspired and enlightened by your truly brilliant posts.  As a caregiver I could never quite feel exactly what it would be like to be in the shoes of the patient but the courage that I see on this list serve truly amazes me and forces me everyday to be a better person, to live a fuller life, and to inspire others to do the same.  In my religion the Torah often repeats itself because the idea of repetition is that one kind act begets another kind act.  This list serve is an example of this, one person helping another and on and on.  You are a fine example of this and I thank you for making my life richer.  Love as always, Bari wife of Matt

Thank you for your encouragement and kind words.  It is a good thing that you do not wear the same shoes as us patients.  But it is very good that you have become empathetic and appreciative of life because of your experiences.  I have often thought about both roles, caregiver and patient, wondering if one was "harder" than the other.  I have been in both roles in my life, seen how my parents reacted to my childhood cancer way back when, and how I reacted to theirs (Mom had aggressive Melanoma which took her in 1995 and my Dad has a more merciful Lymphoma that he is living with).  Putting aside the pain and misery many cancer patients have to endure, is it really easier to care for a loved one with cancer than to be the one with cancer from a spiritual standpoint? Is the level of courage required really that different?

I will let the question hang in the air.  Because it doesn't really matter what adversity we speak of, it is the courage itself that counts.  The ability to love, and more to the point, be loved, is the source of that courage. 

The helper and the helped share a bond of love and caring that transcends the adversity itself, making the display of courage the natural product of the bond.  This is more often observed by others than by oneself.  The caregiver and patient both feel overwhelmed and inadequate in the face of this challenge, unsure at every step if they are doing the right thing, making the right decisions.  Yet others, observing them, will hail their great courage and determination.  I can tell you, no caregiver or patient feels as confident as all that!

Courage is a necessity rather than a choice.  Faced with a situation you can't change, Life demands that you rise to the challenge.  You can't change that you got sick, but you can work on treatment and healing (even when a cure eludes you) and live as fully as you are able.  Your loved ones and caregivers can't avoid the fact of your illness, but they can surround you with love and support and help and quality of life.  For people capable of loving and being loved, these choices come naturally, yet are defined as proactive courage. 

Courage in the face of death and loss comes naturally to loving people.  But is it harder to die or to grieve? Another question hangs in the air.  The pain of separation is unavoidable no matter how great your faith.  And this is truly the one situation no one can change.  Courage is a necessity again.  And as before, it is a phenomenon more observed by others than by oneself.  Both the dying and the grieving feel overwhelmed and unsure, but their courage shines forth to inspire those around them. 

Bari, I know that your own courage is more obvious to others right now than it is to you.  Just know that your love and inner strength are carrying you through this time of grieving and will bring you to better, brighter times.  I admire your courage. 

Love, Elizabeth

-----------------------------------
          Date: Sat, 24 Sep 2005 11:48:04 EDT
From: Elizabeth Parcells 
Subject: Re: Radiation Pain?

Hi Beth,

Your question: does radiation cause pain or additional symptoms? Short answer, probably not to the degree you describe, no. 

I am going thru similar stuff right now.  (background: stage IV dx July 2003 with liver and pelvic mets and lymph involvement, liver nonresectable, started FOLFOX after colon surgery, then Avastin, then Camptosar, today taking Erbitux and Avastin combined with Camptosar, radiation to treat bone pain recently)

I have a number of mets to the spine now too,a few of which are causing pain.  Recently I was given ten radiation treatments to the region of the 7th and 8th vertebrae where the lesion had become larger and threatened to press on nerves.  The pain was significantly helped, but I began to notice trouble swallowing and irritation to the digestion.  I asked the radiologist what might cause this and he said the close proximity of the treated spine area to the esophagus could well cause this reaction. 

Other than this, the only radiation related symptoms I noticed were fatigue (I slept a lot) and some extra nausea.  I had no pain from radiation. 

Other areas radiated to control pain and symptoms from bone pain were my left shoulder rotator cuff, and the base of my skull were a lesion was pressing on an ocular nerve causing double vision which thankfully has been resolved so I can see normally again.  Again, no pain or GI symptoms from the radiation itself.  In fact the radiation has been very effective against the bone pain I was having.  (And bone pain is AWFUL.)

The other symptoms you describe could be related to the chemo (FOLFIRI is notorious for some of the symptoms you describe like appetite loss, dehydration and GI troubles) to new lesions or other types of things.  Be sure to list these symptoms great or small to your doctors so that they can be addressed.  Spending too much time at bed rest can also create problems like joint pain, changes in bowel activity and digestion, and so on.  There isn't much left to blame on the radiation treatments. 

I hope this helps.  Elizabeth www.elizabethparcells.com  

9/21/2005 9:25:13 A.M. EST, mullins417@ writes:  Hello all, We learned in mid-August that my husband Dan has 4 spinal mets (in addition to his multiple, inoperable liver mets).  He began daily radiation Sept 6 to kill them and the 3 nearby lymph nodes that were the source of the journey to the spine.  The day after he began radiation, he started FOLFIRI (FOLFOX wasn't working).  We thought we were prepared for the inevitable diarrhea with sandostatin shots, both short acting and the long acting release.  However, he couldn't keep even a little water on his stomach and after 3 days of vomiting, ended up in the hospital for the weekend with dehydration. 

The nutrients and prescriptions for Kytril and Reglan did wonders and everything was groovy until a few days ago his lower back and left hip began to really hurt.  Prior to the discovery of the spinal mets, his right hip/thigh were the problem areas.  They really aren't an issue any more.  He also is complaining of a full feeling in his left side (back).  Does radiation cause additional pain like this? Also, out of the blue yesterday, he began the vomiting again.  Is all of this to be expected or do we need another MRI or CT? Sorry for the length of this, but thanks for any replies. 

Beth

------------------------------------------
Date: Sat, 24 Sep 2005 11:54:38 EDT
From: Elizabeth Parcells 
Subject: Re: past, not future

9/23/2005 8:50:02 P.M. EST, rbeckler@ writes:  Today was my three year oncology followup visit and I heard words I hope and pray everyone gets to hear.   With two clean scopes, normal CEA, no symptoms and clear CT scans, my oncologist said, "I think I can say with confidence that this is part of your past, not your future."

Dear Ray,

This is really wonderful.  You move forward into life with joy and a new appreciation of life's blessings.  You really couldn't ask for more!

You know of course, the best way to protect your treasured good health is continued vigilance, but that is such a small thing that you can do that with little interruption.  You are truly under a lucky star!

Love, Elizabeth

----------------------------------
Date: Sun, 25 Sep 2005 09:23:45 EDT
From: Elizabeth Parcells 
Subject: Re: The Very Worst News

9/25/2005 3:28:27 A.M. EST, christineanne985@ writes:  Christine, wife of Ron, lucky enough to be married to the love of her life. 


Dear Christine,

You are lucky indeed to have known and to know such love.  It is rarer than we think.  I am so very sorry for your loss, I know you will miss him every moment.  It is so that the price we pay for great happiness is sometimes great sadness, just as the price we pay for life is death.  The Universal Human Condition.  Personally, I have found the journey most worthwhile, even with all the ups and downs.  I hope you will find that happiness and joy in your life again that you shared with Ron. 

With love and deep sympathy, Elizabeth www.elizabethparcells.com   CC IV dx 7/03

---------------------------------
Date: Tue, 27 Sep 2005 10:46:12 EDT
From: Elizabeth Parcells 
Subject: Re: Ulcerative Colitis new dx Cancer

Dear Karen,

My heart goes out to you as I read of your trials and troubles.  The pain is especially demoralizing and the trouble eating and keeping weight up really takes a lot of joy out of living.  We each have our crosses to bear, and so comparisons with other folks burdens are never right on.  But we do have common ground in all of this. 

When you say, most people just plain don't understand what you go through, you are right.  How could you describe this to a healthy person with no experience of what this is like? Even the medical personnel who are trained to take care of us don't fully comprehend.  I have an inkling of what you describe out of my own experience, but it is still not quite the same. 

Still, I think you find more understanding in a group like this one than trying to express yourself in healthy circles. 

I wish I could help or suggest something to ease your pain.  No doctor am I, but I do wonder if something more could be done.  Do your doctors have any more sweeping solutions to your dilemma?

With cancer, the treatments I sum up are cut, poison and burn.  None of these sound terribly healing or soothing, but until now, they have been our only options.  Work is ongoing to find other, less destructive treatments.  But for cancer, we often turn to the surgeon first to cut out as much disease as we can.  Then chemo and radiation are utilized to help control or finish off the disease.  That in a nutshell is the course.  What all goes along with that fills volumes. 

With colitis, I know that is another subject.  The threat of cancer forming out of a long colitis history is real.  In my case, I had no pre existing conditions and was without any symptoms when my cancer was found.  "Out of the Blue" I guess you could say.  Fair warning is not given to all of us.  If you can avoid adding cancer to your list, it is worth whatever it takes. 

Take good care, and I will pray for healing blessings for you and that your life will improve in health and wholeness. 

Love, Elizabeth

---------------------------------
Date: Wed, 28 Sep 2005 19:31:34 EDT
From: Elizabeth Parcells 
Subject: Re: Ulcerative Colitis new dx Cancer

9/27/2005 6:40:05 P.M. EST, skkjwalker@ writes:  Dear Elizabeth,

I wanted to tell you how much your message meant to me.  I am having an especially awful time with it over the last 3 weeks or so.  I am crying as I type - it is just plain awful right now, and your message was wonderful to read on a day like this.  I couldn't even shower today until 1:00!!

Rarely do I even talk about my disease to anyone, because first of all, they probably wouldn't want to hear about it, and secondly, they just can't begin to understand.  So I joined this listserv even though I don't have colon cancer, because I couldn't find a group with my complex situation.  There are UC lists, but those folks are able to live and work like I used to.  They are not on a chemo, not fighting mouthsores, hair loss, or having the complications that I have with joints and things. 


Hi Karen, well, remember, if you can't vent here, then where? Don't worry about that.  You may not have cancer in particular, but you are still in the right place with this list.  The side effects and symptoms you are dealing with are very like what folks here are experiencing. 

Balancing family, household and personal concerns in the midst of all that is challenging, even if you were healthy.  So don't be too harsh on yourself because you can't help with "normal" things.  Your family loves you and accepts you as you are and are willing to help you always.  Your children are learning important lessons from your life and example of courage and high values.  How easy it would be for you to give up and stop caring! But you don't.  You really do care for them and worry that you are letting them down.  Trust that they know that. 

Main thing is, you are there for them.  Alive.  Life with them is better than no life.  They have their Mom and that is what they treasure.  So, when you slow down, don't feel despondent.  Just go with it and try to relax in the assurance that your priorities lie higher than a little household grime or unwashed dishes.  I would rather live in a dirty house full of love than a clean one full of coldness.  Besides, there are these handy maid services for heavy cleaning, and not as pricey as you think.  Get 'em in a few times a year for the rough stuff, does wonders. 

It is so hard to let go and let others help you.  You want to spoil the kids and pamper the husband your way, and the frustration you feel is understandable.  There are some things you just can't delegate.  Just keep the priorities straight and you will see that Love comes first, expressed in sincerity, not just good cooking and a clean house. 

I know your heart is in the right place, what else really matters?

Love, Elizabeth

-----------------------------------
Date: Thu, 29 Sep 2005 12:57:42 EDT
From: Elizabeth Parcells 
Subject: Re: coverup for rash

9/28/2005 1:15:08 P.M. EST, jpeter2338@ writes:

Sorry to keep going back to this subject but it seems like more questions arise after every dose of the Erbitux, as the rash changes everyday.  Has anyone used any makeup (e.g.  concealer, powder) that they would recommend to cover up the rash, or at least reduce some of the ugliness that it causes.  Not to sound vain, I just have never had to deal with acne and its difficult to look at myself, let alone other people.  Thanks for any suggestions,

Hi,

I am on Erbitux now, and got a rash on my face from it.  It just feels scaly and dry, almost like a burn.  Unfortunately I am a bit of a scratcher, so I may have made matters worse by touching it in my sleep.  I put some antibiotic cream on which helped, and also plain moisturizer.  Fixed it up with a little makeup power to dull the redness and it doesn't look too bad. 

The rash has improved now after a month of Erbitux, so it doesn't look bad now.  But I do have to take good care of my face, washing often and applying the creams, keeping my hands off it and letting it rest and heal.  I didn't have any spread beyond my face, so I guess I got lucky. 

Hope this helps a little, Elizabeth

--------------------------------------
Date: Sat, 8 Oct 2005 14:34:40 EDT
From: Elizabeth Parcells 
Subject: New phase

Hello Kate and all friends on the list,

I just came out the hospital where I was treated for side effects and pain for five days.  I am feeling so much better than last week! On Monday I went in for chemo, but the oncologist told me I was just too sick.  So he admitted me.  Good move.  I was having a lot of GI trouble, unable to keep food down and crampy.  Also, general weakness, plus the very daunting pain from increasing development of the bone lesions in my spine.  I must have looked awful.  The Erbitux rash had broken out, so my face looked like a battlefield, I had thrush in my mouth, I could not stand or sit for the pain so I'm sure I was not wearing a pleasant expression, and the Dr.  didn't like it at all.  He feared I might have an obstruction, so he took no chances. 

After two years on chemo, and according to his evaluation of my current stage of disease, he finally said the words none of us want to hear.  He said that in his view the chemo part of my treatment was now more detrimental to me than beneficial and that we should stop now.  He was gentle, reasonable and intelligent in his explanation of this.  He said, when I was ready, he would prescribe hospice care for me so that I could stay home and not have these very difficult pilgrimages to the hospital or any reliance on ER care. 

I know he is right.  It is not unexpected at all, but still it is a jolt to hear it from him.  Anytime a treatment option falls away, it is hard to accept.  I have been fighting so hard, for which he praised me, saying that a second year chemo patient traveling to New York and singing a concert at Carnegie Hall shows exceptional strength and determination.  That's what a Diva loves to hear, well done!

But of course, I had some tears over this revelation.  I am strong but not made of stone.  My dearest friend and caregiver Ric was also very moved.  It is hard to see my beloved suffer for me.  But I have determined that this is the right thing.  I am so very ready to feel better and recover my strength.  Also now, I am concentrating harder on pain management with the chemo side effects out of the picture. 

In the hospital, the pain folks came to puzzle over me and my intolerance of morphine and all its cousins.  They decided to try a Fentenyl patch, which I wore for 12 hours, until in the middle of the night, I reacted badly yet again.  I became very drugged, heavy chest, seeing shooting stars, and becoming verbally incoherent.  Brain befuddled, and nauseous, throwing up several times, I was miserable again.  They removed the patch, but it took another 14 hours for it to wear off.  My Dad came to visit me in the morning and I still couldn't express myself, which upset him and me too! So that is it! No more of that stuff either. 

I kept asking for the radiation to my spine I had been promised to control the pain.  So in this case, the procedure was planned and carried out while I was inpatient.  Called "radio surgery", usually used on the brain, the doctor in that department explained to me that he had pioneered the use of this particular machine and software to treat spines.  Thursday I was on the table for the non-invasive session with radiation right to where it smarts.  I am waiting for the effect to kick in, and can hardly wait to get the hoped for relief. 

Meantime I am managing with tylenol and altram.  So far so good.  Pain or no, I don't want my pain meds to make me a drooling idiot.  I found my loss of mental faculties very upsetting, and kept weeping with frustration during the whole patch experience.  My plan is to get better now, not worse. 

Today I feel so much better already, I am feeling good about this new phase.  I see it as the logical next step in my care for myself, in reducing pressure on me, and thereby defusing the stress my family and friends feel for me.  I am in great spirits and accepting of the situation.  It is important to me that the people around me feel relaxed and comfortable with me and don't see any anguish or distress in me over things that are what they are.  Sure I worry about what lies ahead for me, fearing the complication from disease that can happen, but I take back my power as I plan for eventualities as best I can. 

I know many of you are focused on continuing treatments and clinical trials, fighting the beast every step of the way.  I admire all my cancer comrades, all the activists working politically and in the health system for change, research and the ultimate cure.  The battle can never end if we ever expect to vanquish this horrible disease.  I feel I have done my part too, surviving the first cancer when I was but a toddler, and starting out my treatment this time with a clinical trial in the interest of future generations.  Each of us has something to contribute to the effort. 

Let me not speak of myself in the past tense.  I am very much here and intend to stay awhile.  I am enjoying life in spite of all, and life is for living.  I am so thankful for the blessings of love and family, loyalty and devotion, faith and hope in my life.  I can truly say, I am content. 

The posts to this list are important to me and I follow then like a fan of this great group.  I will write more often now that I am feeling so much better.  I love you guys. 

Elizabeth

----------------------------------
Date: Sat, 8 Oct 2005 23:10:28 EDT
From: Elizabeth Parcells 
Subject: Re: New phase

10/8/2005 2:51:25 P.M. EST, akingston@ writes:

You have the most eloquent postings.   I have tears in my eyes as I cannot imagine facing what you have faced so far.  But I suppose in some ways these tears are for me also.  You are where I fear I will get to.  When they say, well buckle up cause the ride is coming to its end. 

I hope this is not too crude of a way of expressing myself.  But I have been dealing with very difficult side effects from the very invasive HIIP abdominal surgery and find myself daily wishing for feeling good.  Remember when you used to take that for granted? That is something you and I will never do again.  These days when you feel good enough to think and feel outside of your realm of pain and misery, it is a marvelous day! Does that make sense?

Anyway, thanks so much for continuing to share your journey.  May you have many days of feeling good and aware and independent. 

Many blessings to you, Allison

Thanks Allison,

It feels even better to know you understand what I am saying.  I am slowly making the new phase clear to my family, especially my Dad who keeps things inside where they tear him apart.  So I am "rehearsing" how I sell the package to them.  You and I can understand the need to feel better, on the old "feels so good when it stops" theory.  But some people might think this is "giving up." When every fiber in our being cries out, SURVIVE at all costs! After all, survival is one of our very strongest instincts.  It goes against our every instinct ever to give up. 

So I don't give up.  Not at all.  I am here, I will stay here.  This is a new phase, not goodbye.  Thanks for your good wishes and understanding. 

Love, Elizabeth

----------------------------------
Date: Sun, 9 Oct 2005 07:10:47 EDT
From: Elizabeth Parcells 
Subject: Re: New phase

Hi again, Sherri, Rebecca, Erica, Nancy, Deborah, Cynthia, Allison, et al,

I had a hard time writing this string because I know the spirit and courage in this group depends heavily on optimism and hope.  And yet your responses to me have been no less than I expected of you, so understanding.  sympathetic, and above all lovingly supportive.  For that I am thankful to you all.  Let's talk future tense, because I think we are getting to the good part.  Stay tuned. 

Not wanting to depress anyone, but still as truthful as ever, I had to let you all know what is up with me because the purpose of this list is communication on all aspects of colon cancer.  It helps me tremendously to be able to express myself here so freely and receive such wonderful, useful feedback from people who are on the same path.  No one likes to bring bad news, so the best thing to do is concentrate on the good part.  All of us in the Stage IV Club keep the optimism and hope on top of our survival kits. 

My hope is that I can recover strength and well-being now, live better and longer without the awful strain of Chemo treatments.  I am very sensitive to meds of all kinds, reacting badly even to the meds that are supposed to help the side effects.  I persisted all this time because life is the whole point.  Right now my feel-good program includes Protonix, Dedadron, Altram and Tylenol.  Nothing burdensome there.  Pain is subsiding in my bones, appetite is good, spirits high.  This to me is excellent news. 

How about the future? Ah, well, who can know! Lots of things could happen, if I take the time and energy to worry about it.  I'll stick to the classic "one day at a time" pattern and seize the day.  I'll keep writing, try 'n stop me, and in touch with this fine list and the friends I've made.  Have you noticed, I am feeling quite wonderful just now. 

Love, Elizabeth

---------------------------------
Date: Sun, 9 Oct 2005 14:45:03 EDT
From: Elizabeth Parcells 
Subject: Re: New phase

10/9/2005 2:00:12 P.M. EST, jaybyrd1@ writes:  " I can truly say, I am content."

I guess that these seven words sum it all up.  

The hard core, never give up caregiver part of me (yes, he's still there) is tempted to say please reconsider before you throw in the treatment towel ...  but, the fact of the matter is that I've never had to go through the horrendous systemic chemo that you've been through, so I guess that I'd be talking out of church somewhat. 

You owe to yourself to do what you think is best and to enjoy the best quality of life that is available to you. 

It's interesting, to some a good quality of life means battling phase one clinical trial side effects to keep a glimmer of curative hope alive ...  to trail blaze for the others that will be diagnosed this time next year ... and for others it means beginning a new type of hope, as is what you seem to be describing. 

Good luck to you as you enter this new phase of your life.  You seem very at peace with your decision and with yourself ... which is a lot more than I can say for myself! :-)

Carl

Hi Carl,

I hear you loud and clear.  Hope for the future is based on the progress of today in treatment and prolonged survival.  I have taken advantage of this progress, always receiving the best of care and the newest in treatment options.  I began my treatment by joining a clinical trial for the very reason you describe, to contribute something to that progress.  I went to Chicago for the TheraSphere treatment under the compassionate use clause to help Dr. Salem with his campaign to get this device FDA approved for secondary liver cancers.  This treatment can be used palliatively to prolong life.  I believe it has done that for me.  I may well have gained a significant number of months from it, where my liver function is good and the worst of the liver lesions slowed or stopped.

My first line chemo was FOLFOX, which halted progression for over a year.  Not bad.  I did Avastin and Erbitux too.  Radiation has helped keep the bone mets at bay.  So I have never been reluctant about treatments, even with all the nasty side effects I've had to endure.  And I have studied the specific treatments and new developments avidly, always searching for that prolonged survival factor.  I also have that same never-give-up spirit that you do. 

Although my doctor and I are ruling out chemo now, he is still my doctor, on the case for as long as I'm here.  I am glad of that, because we have a good rapport and he knows me well by now.  I wouldn't look forward to "breaking in" someone else.  The way he explained it to me, he said I had reached a point in my endurance and tolerance of the chemo where the risks outweighed the benefits.  Chemo is toxic and causes serious problems of its own.  These problems were manifesting themselves more and more dangerously in me and he worried that he was doing me more harm than good by treating me so aggressively. 

The minute he said that, I knew he had made the point, as it hit my brain and spirit in the right place.  Spontaneously and without much hesitation, I acknowledged his opinion and agreed with him.  Funny, I didn't figure I would be so willing to accept that scenario at first, but truth is, when you get to that place with perfect honesty, you will know. 

This is a process.  You can't know just how you will feel about a situation/decision point until you get there.  If you are still in fight-like-Hell mode, throwing in the proverbial towel would be simply unthinkable, and was for me all this time.  And really, I don't feel I am throwing in anything I can't well live without now.  I read the statistics on how much and how long these treatments can benefit patients, and it's limited.  I knew that going in.  To take chemo while disease continues to progress as in my case is futile.  Much better to turn to other options than to waste your life on something that is clearly not working for you. 

So it's time to bulk up for the next part of the campaign.  Acceptance of this decision helps me move forward promptly to other positive steps I can take on my own behalf.  What's done is done, rethink, plan and act.  My style, works for me. 

So Carl, I really can say it, without agonizing over what is decided, I am content.  I will stay right here combing for other options, being supported, supporting and interacting, and fighting my illness with everything I've got.  Thanks for your message and concern, you keep me thinking. 

Love, Elizabeth

-----------------------------------
Date: Mon, 10 Oct 2005 00:43:57 EDT
From: Elizabeth Parcells 
Subject: Re: New phase

Hi Gene-Paul,

I always enjoy your unique perspective and way with words.  I have been aware of the HPV vaccine development for some time before it hit CNN evening news.  Breakthroughs in research are rolling in all the time.  I have often teased the chemo nurses that chemo will soon be obsolete and they will all have to look for new jobs.  They grin and say, "Gladly!" It can't be easy on them poisoning people day in and day out for the good cause.  Cancer is so tough on everyone.  The doctors and nurses who specialize in it are all incredible in their dedication. 

I dream of the time when cancer is chronic not fatal, or cured all together.  The possibility that something new will come along that could help me is still in my mind.  Where there is Life there is Hope.  And I feel terribly alive and very hopeful.  You have experienced this, having survived far beyond what was expected in your case, your hope is real and justified.  How tremendous to achieve survival against all the conventional wisdom!

And say, you may remember, I had a neuroblastoma when I was two years old.  It was inoperable and I was given but a few more months to live.  There was no such thing as chemo in 1953, so an experimental treatment was tried, cobalt radiation to the tumor.  Then watch and wait.  After 8 years, I had exploratory surgery again and the shrunken tumor was found to be benign and could be removed.  A miracle? A "deus ex machina" at the last moment to save the day? God had a plan for me and spared my life? I have had over 50 years of survival to ponder this. 

So I am a very old cancer soldier, not easily ruffled by questions of mortality.  I have lived my life dancing, singing, becoming an artist, cultivating my soul and knowing my savior.  That is why I so admire other survivors.  We differ from "regular" folks because we are so keenly reminded that our lives here are temporary.  But think of the opportunity for growth and development of the spirit that comes with this enlightenment.  Your priorities are snapped into balanced perspective, you think on what's really important. 

Geee I'm talkative today.  I am feeling so good, I'm like a geyser! Excuse me for dominating the board this way.  I just seem to have a lot to say all of a sudden.  So thank you for listening.  Keep surviving and seeking the cure. 

Love, Elizabeth

10/9/2005 11:29:45 P.M. EST, gsalls@ writes:

Elizabeth: I think you have reached the path of which we must travel.  Some will have flats , some with engine problems and some that run out of gasoline.  In each of the above we fail to follow a normal day , in some cases revolt. 

I cannot come close in telling you the right path as we are all very different.  The advances being made right now in cervical cancer is a reaction to a wish, and very hard work If they were to ask me to try the new vaccine would be pleased to try.  When they said I was terminal some years ago I told myself ." Do anything , go any place ., try anything , and I have done that "

I went through 7 years following a Colon cancer and at that moment an additional cancer, mantle cell.  I knew then as I know now that I'm not finished , as they will find more and I will do whatever necessary to try to have a life. 

Think that the vaccine is necessary.  To know that to this very day they are hunting down these killers. 

I wish I could be the person to press the triggers to start a new vaccine probe and would go any place to get that job done

As you can see I am in a fighting mode and hope that I can continue., mentally , for that is key element that will allow some of us to continue . My Doc. will tell what is going on as I will be going to the clinic again early Dec.and this time only blood draw . No Cat now nor anything else .

I hit upon the key element to our living with cancer and that is the ability to keep our minds in good condition.

It's time to hit the silk...........Gene-Paul.

..Dancing on a dime..


----------------------------------
Date: Wed, 12 Oct 2005 14:49:50 EDT
From: Elizabeth Parcells 
Subject: Re: Overwhelmed

10/12/2005 11:19:33 A.M. EST, Lois@ writes:

Thank you Chris for you kind and wise words.  I am going to check out a support group tomorrow that meets near my work.  Funny, George and I met at a support group for parents having problems with their teenagers.  I told George about this list on Monday night and this morning he asked me to show him how to get on this list to take a look. 

Lois Anne


Hi Lois Anne,

You have gotten such great response to your overwhelmed thread, but I thought I would just chime in a little.  Very good news that George is curious about this list.  It is a great way for him to keep his privacy and still deal with his issues with this wonderful group to help.  I know it has helped me tremendously, in many ways, better than a regular support group.  This way I can write about what I feel day or night, reach the group at any time, read the other posts when I am able and never even leave my chair or bed.  It is the greatest. 

I am a stage IV, pretty sick right now after a two year struggle so far.  The sheer convenience of communication on the Internet is invaluable to me, because I really can't show up for a meeting in person.  I hope George will read what has been written here already by cruising the archive.  He will find plenty of good and useful stuff. 

If he is willing to look, I think you are on a good path to where you would like him and you to go on the communication and denial issues that have had you so concerned. 

Good wishes, Elizabeth

----------------------------------------
Date: Fri, 14 Oct 2005 00:17:44 EDT
From: Elizabeth Parcells 
Subject: Re: New phase

Hi Karen,

Thanks for your thoughts.  I hope you are feeling better as you say.  Sorry to hear you have been ill. 

Update on me, home from the hospital, I have been on strict TLC and rest now, and am actually enjoying life more.  I have plenty to smile about, being comfortable and fed, rested and with my symptoms subsiding, things sure are looking up.  I have been on an Internet shopping spree, ordered some flannel pajamas from Victoria's Secret, cute as heck, polishing my nails and putting my jewelry back on.  I pamper my poor face, oil my feet, write letters, and lounge enthroned in my large comfortable bed.  Spoiled rotten and waited on hand and foot.  Friends come to visit and are happy to see me so content and relaxed. 

The radiation a week ago hasn't had enough time to really work, but I am moving better now.  I do have nursing care here a few times a week, so at least I get up and washed regularly.  That feels good too.  I am very tired physically, but alert mentally.  Life is fine. 

The whole hospice thing, I just look at it as home care covered by my insurance, much cheaper than a private nurse.  I do need attention at home and this is the way to get it.  I am not going to wait for this advantage until I am too sick to care.  Let them come and take care of me, why not? I hate the ER and want to stay at home.  So this week or next I will sign up for it. 

I view this also as something I can change if some treatment for me comes along.  I remain flexible in my thinking and continue to search for solutions. 

I do like to write, as you see, and will keep doing that.  I don't want you to worry about me, things are really quite okay.  I feel I have adjusted to this and still have a clear mind for the future and for hope. 

So Karen, please take good care and feel good and strong.  That is the way to beat the beast. 

Love, Elizabeth

10/13/2005 11:11:16 P.M. EST, skkjwalker@ writes:  Dearest Elizabeth,

I have been thinking a great deal about you, and wanted to write to you earlier after reading your spectacular post, but unfortunately I have been too ill to do so. 

Your post was so beautifully written - even when having to now speak the very difficult phase you are entering.  I admire your grace and dignity in the way you are choosing to spend your time.  It is certainly far better to find a way to enjoy your loved ones and spend meaningful time with them rather than end up miserable with the medication side effects.  Still, it is just so unsettling that they really have no alternatives to relieve your pain. 

I have been praying for you, for relief at least with the help of the radiation you just had, and for the strength you need to continue to fully embrace your life in the way you want to.  It would be unsettling, I am sure, to now have to consider hospice at some point - but perhaps they may have some techniques that would leave you feeling better able to function with a clear mind. 

What a journey you have experienced - and yes - absolutely with great effort and fighting this wretched beast as you have.  I find myself wondering if you have been keeping a journal or if you have written a book.  Your messages are so clear and inspiring - you clearly could be a writer. 

It is so good to hear of your feelings of contentment, and the relief you have from being set free from the chemotherapy.  I will continue to pray that your coming months will remain such that you can be very comfortable. 

Take care - I am sorry this message is written so awkwardly.  I greatly enjoy you here on the list, and so wish there was a cure in your future! Consider yourself hugged.... 

Love to you, and many prayers,

Karen Walker


--------------------------------------
Date: Fri, 14 Oct 2005 13:28:18 EDT
From: Elizabeth Parcells 
Subject: Re: A little less overwhelmed

Hi Lois,

So glad to hear you are adjusting well.  As a patient, I can tell you a few things to do to help George cope with his condition as it is now. 

Concentrate on his diet and good, appropriate food.  His appetite and tastes will get specific to certain foods and sometimes things he liked before won't be on his menu anymore.  Be sure to ask him what foods he is wanting currently and be careful with portions.  Taking care of the food for him is a relief to him. 

He does need rest, so he'll need reminders to take extra time for it.  If he feels that he can kick back and not have too many chores or responsibilities in the household, he will rest more.  I had a hard time adjusting to that part, accepting help and reducing my activities.  It takes a little time and experience. 

I get a lot of help from my sister who I have designated as my patient advocate.  She handles the insurance company, helps with appointments and comes with me to hear what the doctor has to say when test results are in.  She does not get involved in my decision making, which I insist is my area, but she is always ready to listen to me, and she will offer her view if I ask her for it.  Just getting the insurance work and reimbursements managed is a huge load off of me. 

My dear, dear friend, Ric, who never leaves my side, he is my main caregiver.  From him I have companionship and the comfort of a presence through the sometimes restless nights.  He is very calming and accepting of me, brings me whatever I need, and is my best friend.  He is always willing to listen to me when I need to talk.  God is good that I have him. 

So I am saying, there are many things you can do to lighten the load for your patient, by taking on certain annoying responsibilities and keeping things well organized and convenient to save the patient's precious energy.  This ensures a better overall quality of life for him, and you by the way. 

Hope you find these ideas helpful. 

Love, Elizabeth

-----------------------------------------
Date: Sat, 15 Oct 2005 05:31:49 EDT
From: Elizabeth Parcells 
Subject: Re: New phase

10/14/2005 6:22:03 P.M. EST, suewarner16@ writes:  Elizabeth,
When we moved to hospice care with Mom, the enrolling nurse told me that Mom could "graduate" from hospice care.  So, I like to think that you can too. 

I think it provided Mom some comfort knowing that she could move out of hospice care. 

Be well, Susan


Hi Susan,

You are correct, I do have options.  Right now I am needing care at home and someone to call on nights and weekends to avoid ER.  However, if I rally, and if there are treatment options available, I can leave hospice if I choose.  That is what we always have to remember.  Options are always ours.  I still feel very much in control of things.  Thanks for the reminder. 

Love, Elizabeth

-----------------------------------
Date: Sat, 15 Oct 2005 06:03:13 EDT
From: Elizabeth Parcells 
Subject: Re: Stage IV

10/14/2005 10:40:56 P.M. EST, Franrauba@ writes:  Hi Meri:

I am only replying to one part of your message.  Your Dad is young and has treatment options that I am sure Kate will respond to. 

I was dx'd in 98 at the age of 58 with stage III and underwent chemo and radiation.  Met to the lung 4 years later with surgery and chemo. 

I guess what I am perplexed about is why has your Dad has not been told about his diagnosis and future treatment.  He is the person who has this disease and entitled to know what is happening to his body and to make decisions about it.  You or any other family members do not have the right to make decisions for him unless he is incapacitated.  You might think you are protecting him but you are denying him the right to know what is happening to his body and what could be done for the outcome and what he is willing to do to fight the disease. 

Sorry to be so harsh, but if it were me I would be mad as hell if my family kept this from me.  I would also be mad as hell if the surgeon or Onc would not consult with me first before they told the family.  This disease is beatable and many of us on this list have gone on to be survivors because we are knowledgeable about what treatments are now available and what might be on the horizon.  I hope you will continue to be part of our list and your Dad also.  Fran

Hi Fran, Hi Meri,

I remember a thread we had awhile back on "What to tell the patient" where we discussed this very issue.  I am a fifty something, mature, unmarried woman, so when the doctor had to tell me my bad news, there was no one else but me to tell.  I am glad I was told directly, in private, one on one.  I wanted to tell my family in my own way, not have them telling me.  My health is my responsibility. 

Where do these doctors get off talking to the family INSTEAD of the patient anyway? Seems bizarre to me.  The harsh news is hard to put nicely and we all complain that the doctor was cold or unfeeling in the telling.  But these days where patients are encouraged to take the lead, make informed decisions for themselves, it is simply not appropriate to keep a responsible adult in the dark.  You can't go into this voting booth for someone else. 

The first option I was offered was to take treatment, or not to take treatment.  Then, having decided to take treatment, what treatment.  Decision points arose again and again.  Always, I was in the drivers seat, no one else, and personally I would have it no other way. 

So what do we tell the patient? Everything.  Especially how much we love and support them. 

Love, Elizabeth

---------------------------------------
Date: Mon, 17 Oct 2005 15:56:57 EDT
From: Elizabeth Parcells 
Subject: Re: tips for the shortened colon

10/17/2005 1:05:00 P.M. EST, gail.imig@ writes:  I am watching this discussion very carefully and wondering if anyone else has problems with constipation.  I am stage 3cc, 8 months after colon surgery and 3 months after chemo.  I eat a high fiber diet with lots of fruit and veggies but things just don't come often or easily.  Thanks Gail


Hi Gail,

I had chemo long term and my diet changed quite a bit.  The constipation problems I had were related to the pain morphine I tried.  The chemo made it very hard for me to eat any fresh or raw fruits or vegis.  The insoluble fibres are not digestible and can cause hard stools that are especially difficult to pass thru a colostomy.  Certain vegetables and legumes cause painful gas too and ought to be avoided.  Broccoli and beans especially. 

The nutrition person told me at the start to forget all the good things I learned about healthy diet before and eat the things I can tolerate instead.  Gone the bowls of pitted fresh cherries, the teeming salads, the sauteed vegetable pans, the raw juices, and bean pots.  I found high protein to be my friend and the right carbs.  Lots of Ensure to make sure, and remembering which foods had helped or hindered. 

We each have our own stomachs, but you might try adjusting your thinking on the healthy fruits and vegetables and see if less of them in your diet help you with you digestion. 

Love, Elizabeth

------------------------------------
Date: Mon, 17 Oct 2005 17:08:39 EDT
From: Elizabeth Parcells 
Subject: Re: Trouble swallowing

10/17/2005 4:42:38 P.M. EST, fz34@ writes:  Charlotte, My husband, Bill has had trouble swallowing, and complains of hoarsness and a sore throat ever since he started Avastin.  He said that he feels raw all the way down when he swallows.  They sent him to an ENT last week, who found nothing wrong.  His voice changes to very squeaky if he talks too much and when he first gets up in the morning. 

The ENT man said for him to try to speak with a lower voice so that he would utilize the center of his larynix instead of the sides.  This is all he told him.  No other advice was given.  Francie, wife of Bill dxed 2001, stage IV colon cancer. 


Hi Charlotte,

I'm a singer who they put on Avastin for awhile and I too noticed a lot of hoarseness from it.  Really bothered me to have my voice of all things affected that way.  But as you say, there was nothing they could do or tell me to resolve it.  So I reached for my old singer standbys like warm tea with honey, light salt gargles, a little steam, chicken soup, and vocal rest. 

Sometimes the doctors don't have any better answers than something soothing you can make on your own stove at home.

Love, Elizabeth

----------------------------------
Date: Tue, 18 Oct 2005 04:26:44 EDT
From: Elizabeth Parcells 
Subject: Re: We take one day at a time - Michelle's update


10/17/2005 9:48:13 P.M. EST, gleann@ writes:  I know my next email will be very difficult but I have gained knowledge and strength from reading others on the list.  At this time peace is what she needs. 

Regards

AnnMarie - mother of Michelle dx 12/03 cciv (age 22 now)

Hello AnnMarie

I am so glad that this list has been able to help you so much, I know it has been helping me too.  Your beautiful daughter Michelle sounds like someone I wish I could meet.  Your loving description of her character, personality, care for others and her real approach to life and destiny as such a young person truly inspire me.  What a wonder mother you are!

I am praying for you and your family in these days and wish you great strength, comfort and love. 

Love, Elizabeth

------------------------------------
Date: Tue, 18 Oct 2005 05:02:09 EDT
From: Elizabeth Parcells 
Subject: Supportive Care talk

Hello everyone,

Today I have a feeling of real accomplishment.  I officially entered the hospice program of my health system for the supportive care they can provide for me and my family.  I learned a few new and important things about this area that may help some of us make this decision. 

First, according to the hospice social worker who came to my house for our first interview, the requirements have changed for joining.  The prognosis is no longer limited to six months for "terminal" patients before the insurance can pay.  It is now generally recognized that this amounts to "playing God." Hospice cares for many chronic conditions as well.  I was told that these days, they have patients much longer term than in the past.  So, with this time-constraint out of the way, there is no reason to wait after treatment to take advantage of this wonderful service.  No more gloomy prognosis talk.  I consider this a sea change in attitude on the part of the system. 

For me, the new convenience of this service is going to be great.  A nurse will visit me at least once a week, check me out, check my meds and make sure all my prescriptions are up to date and refilled and even picked up from the pharmacy and brought to me.  She will be in touch directly with my doctor on this and I need not be bothered with it anymore.  My medical supplies, including my ostomy supplies will be delivered to me thru hospice now too, all covered by the insurance thru hospice. 

Most of my care will be at home.  But if for some reason I do need to go to hospital, hospice will ambulance me to there and I will be admitted directly to one of their rooms without going thru ER.  Ah, that's really nice to know.  I can be at the hospital and the hospice team there will care for me.  NO more ER!

The 24 hour hotline is foremost in my mind and a service I have not had adequately until now.  We all know how hard it is to get help on nights and weekends without resorting to ER.  Being able to call a nurse anytime is an improvement over what I have had to endure.  This is also a great comfort to my family and helps with their peace of mind as well as my own.  Annoying about ER is that often, the issue could have been dealt with at home without all that circus. 

So, even though I can't escape the notion that my treatment options have been limited, I feel I have taken back control of my care.  I have taken steps to do things my way, without overly relying on my family and dear friend.  Quality time with them is more important to me.  I know my decision will help unburden them.  Oh, and I do plan to be here for a good long time to come, not to worry.  I am feeling well. 

It was an interesting day.  I will keep you up on this experience and hope it helps some of us take good and positive steps on this journey. 

Love, Elizabeth www.elizabethparcells.com if you like good music

------------------------------------
Date: Tue, 18 Oct 2005 05:20:31 EDT
From: Elizabeth Parcells 
Subject: Re: Supportive Care talk

Elizabeth again,

PS to this, I forgot to mention that my decision to enter hospice today is by no means a permanent one.  If any kind of aggressive or effective treatment becomes available that hospice does not cover, I am free to exit hospice and be a "regular" patient again.  Any treatment I need for pain or symptoms is always available.  So I can still have it all. 

This is important to us all, to keep hoping and working toward abundance of life.  Hospice is by no means a no.  I'm saying YES to life. 

Love, Elizabeth

-----------------------------------
Date: Tue, 18 Oct 2005 12:31:14 EDT
From: Elizabeth Parcells 
Subject: Re: Reversal Tomorrow!!!! OOPS!

Harry, so good to hear from you again, sounding so upbeat and busy! Best of luck with your reversal and getting back yet another level of healing and normal into your life.  The boat sounds dreamy and fun, and you amaze me with your recovery and getting back into life full swing.  I am a big fan of yours. 

Love, Elizabeth

-------------------------------
Date: Fri, 21 Oct 2005 11:47:52 EDT
From: Elizabeth Parcells 
Subject: Re: Sleepless in Seattle

10/21/2005 7:38:59 A.M. EST, lois@ writes:  The duality of my thoughts is maddening: I will have a thought, feel guilty for having that thought, be angry for feeling guilty for having that thought.  Yes this is about him and it is about me and about us. 

Thanks for letting me vent, it helps a lot to be able to get this out. 

Lois Anne, wife of George CC IV, diag 7/12/05


Hi Lois Anne,

You are welcome to vent here, as are we all, one of the main benefits of this list.  Feelings need expression, and this list can act as a valuable buffer so that you dump it here instead of on your loved ones.  I am glad that you are in a good live support group too, which means you are taking action to deal with your very real issues.  It would be no good for you to bottle it all up. 

Negative emotions go with the territory in a situation like this.  Anger we accept as a normal reaction to disaster and unwelcome, unexpected change, when despite our plans, life proves unpredictable and fragile.  The downside of anger is the regret, remorse and guilt it often leaves behind.  A sense of helplessness, loss of control over one's life, feeling the ground drop out from under your feet, man oh man! Lots of us here know just what that is. 

I am in George's camp, the patient around whom everything is revolving now.  I have my own set of hopes, fears, emotions positive and negative, which I can more or often less share with those around me.  I try really hard not to dump negatives on them.  I want calm, smiling faces around me, peace in the house for my well being.  I can understand a patient not wanting to start awkward emotional scenes with his caregivers to avoid that extra stress.  It may appear that the patient is closed up, or unwilling to express himself, which is frustrating when his spouse needs that special communication from him that was always there before. 

Where then does the caregiver go with her/his complex feelings and needs? Here to this list for instance, or to a counselor, support group, best friend are good things.  Keeping a written journal might help you too.  One burden of care giving is indeed providing for the patient while setting aside one's own needs.  As the patient, I am very aware of this and so appreciative of the selfless care I have received.  I know what pain my loved ones are suffering over my illness and in anticipation of the outcome.  Everyone involved has had huge adjustments to make, emotionally and circumstantially. 

One thing about strong emotions is that they are like storms, violent at first, but which weaken again with time and adjustment.  Like the pain I sometimes feel, somehow it abates again, no matter how I think, oh no, this pain is here to stay.  Anger will cool.  The trick is not to do or say things in anger that will leave that guilt behind.  It is that "Send" button we all have that we should only hit when the message is acceptable. 

I've been sleepless lots, trust me.  Sometimes the meds just won't let me sleep.  My mind is going all the time, working out all the complex emotions and coping I need to set correct priorities and keep my energy for what matters.  It is best to sleep on these things, to restore balance.  Sleep, a great healer in the coolness and calmness of the night. 

Thanks for listening to me also.  Love, Elizabeth

----------------------------------------
Date: Sat, 22 Oct 2005 08:49:22 EDT
From: Elizabeth Parcells 
Subject: Re: CAT scan results


10/21/2005 8:48:27 P.M. EST, lois.konrad@ writes:  Any thoughts? Does this drug switch sound normal? Is anyone currently on these drugs or have been in the past and can tell me what it is like? Is it usual to have the cancer grow like this?

I am worried and scared that a bad situation has become worse, should I be?

Lois Anne, wife of George IV CC, diag 7/12/05


Hi Lois Anne,

I began chemo on the folfox regimine which is still considered first line and is often assigned to cases like mine or George.  I was advised at the time that any chemo they try will be monitored for effectiveness for at least two months.  I was also made aware that the chemo agents work differently on different patients, and on some patients, not at all.  A baseline work up including a CT scan is done and then compared to the ones after a time on treatment.  The hope is for the tumors to get smaller of course.  The best I got was that they didn't grow.  So we did continue with the folfox as long as it was "helping."

There came a point it was time to stop the Oxaliplatin part, and so Avastin was added instead.  Later, when this one didn't appear to help, and I was experiencing more and more side effects, we moved over to Erbitux. 

So yes, it is common to move from one of these agents to the other according to the diagnostics and judgment of the oncologist.  They will do their best to find the optimal group of chemos and drugs for the individual patient.  There is some trial and error involved so we patients have to try, wait and test.  It is our best chance to find the right things. 

It sounds like your doctors are following the good procedures and most accepted, proven ways to help George. 

Love, Elizabeth

-------------------------------------
Date: Sun, 23 Oct 2005 16:13:24 EDT
From: Elizabeth Parcells 
Subject: Re: Bone mets

10/23/2005 1:14:21 P.M. EST, jarmarec@ writes:  Do bone mets hurt all the time? I've had a few pains in my lungs (lung mets as well) and had a bone scan but do not have the results yet.  The pain comes on fairly quickly and then subsides within 24 hours.  I thought bone mets would hurt all the time and be continual in pain. 

Thanks

Rebecca


Hi Rebecca,

My own experience with the bone pain is that it can come and go.  I have some bone mets that don't hurt at all located on my skull.  The ones that hurt more are within moving joints or near the spine or if they are pressing on nerves.  I have had several treated with radiation to help with pain which worked well for me. 

I do have one at the spine that hurts when I have to be up on my feet, but does not hurt me when I am lying down.  So, no they don't hurt all the time. 

Hope this helps.  Elizabeth

------------------------------------------
Date: Thu, 27 Oct 2005 02:47:42 EDT
From: Elizabeth Parcells 
Subject: Re: The next incline on the cancer rollercoaster

10/26/2005 8:53:51 P.M. EST, Rslindley@ writes:  That was a great article and overall I was impressed with the outcomes of the trial.  However, I also wanted to point out that these are just the responses noted from the trial.  I had both lung and spinal mets at the time of my Sir-Spheres procedure and excellent response.  I hope I'm not speaking out of turn, but I believe that Elizabeth (who had Theraspheres) also showed good response in spite of extrahepatic mets. 

Just goes to show that everyone is different.  Suzanne

Yes, Suzanne, I had the therasphere version which is just the same, and I am still benefiting.  I have mets outside the liver, but the main thing is, my liver function is good since the treatment.  One less problem is always worth the effort. 

Elizabeth

-------------------------------------
Date: Fri, 28 Oct 2005 10:48:53 EDT
From: Elizabeth Parcells 
Subject: Re: When is "tumor humor" appropriate?

10/27/2005 10:19:51 P.M. EST, ELSpeaks2@ writes:  Just because cancer enters our lives does not mean joy has to exit!


Amen Eddie,

Humor is a vital tool in our survival kit.  It is not the cancer that is funny, and SNL is a cabaret, old friend, with a big old legal department to handle complaints.  So if they have stepped on toes, oh well. 

What we need to do is keep humor in our hearts that overcomes our negative feelings about what is happening to us.  We can still laugh over our human foibles and weaknesses, gathering courage by recognizing that we are not perfect, but can rise above adversity with a defiant laugh. 

I did quite a lot of humor as a performer over the years and learned what the heart of humor can be.  To laugh with and not at, for instance.  Humor is meant to be shared, not used to injure.  On stage, sometimes people would giggle nervously at the serious scene, but far worse was when you tried to land a joke and no one laughed.  Ouch. 

So, I tease the nurses, tease myself, quip with the doctors, smile with my caregivers over the strange predicament in which I find myself, the divine comedy of life.  They say, shall we send you the hospital chaplain? I say, sure, if he's having a bad day, I can cheer him up, happy to help! They give me some pain medicine that causes me to crisis, I tell em, don't try this at home.  They come in with some big old needle to hurt me with, I say to the nurse, hurt me, I've been very, very naughty.  I enjoy catching these Pros off guard!

Sure, we can laugh over what is happening.  It is a source of strength in sharing.  Hope and Humor are so divinely Human. 

Love, Elizabeth

---------------------------------------------
Date: Mon, 31 Oct 2005 13:56:50 EST
From: Elizabeth Parcells 
Subject: Re: Need for Encouragement

Hello Michelle. 

I understand your feelings very well.  You wonder why you are not enjoying your triumph over stage III CC and why you are still so afraid.  Having had cancer, even when you battle successfully, I know you can continue to live under a cloud.  Doubt, fear, like post traumatic stress can still grip you at times.  I know because I had early childhood cancer from which I made a full recovery.  But when as an adult I realized what had happened to me, I too had to walk thru that darkness after the fact. 

So it is that life has really changed, even with the best outcome.  You can draw courage and hope from your victory, but true peace of mind is more difficult to achieve.  It is something to work on and choose.  I think I have lived more fully and taken on more opportunity because of my past than I ever would have, compensating for the limitations I was left with after cancer.  Now that I am indeed sick again, I look back on fifty years of survival I could never have foreseen and I am thankful. 

Keep your hope alive, keep the best thoughts out front, and take the best care of yourself you possibly can.  Then you can live fully with joy. 

Love, Elizabeth

---------------------------------
Date: Wed, 2 Nov 2005 14:23:19 EST
From: Elizabeth Parcells 
Subject: Elizabeth recovering

Hello all, (caution: long post!)

I am following our list with attention as usual.  Very interesting information on new clinical trials and new approaches being tried with the existing treatments show how much work and hope are going into the fight against this disease.  The newcomers to the list are getting the all important support they need to deal with new diagnosis and all the issues and challenges that come with that, which is so valuable here.  My heart goes out to each of them. 

I can identify closely with Meri and her Dad, since his case sounds much like mine, and I appointed my sister as my patient advocate.  A stage IV diagnosis is very difficult to absorb, factually and emotionally.  The initial anger and feeling of helplessness is so fresh in my mind.  I remember the days following surgery waiting for the exact pathology findings, wondering if the surgery had gone far enough to nick the cancer, especially the lymph and liver.  I had even been prepared for a hysterectomy which was skipped because it would have increased my time and risk in surgery.  I felt frustrated that the surgery had left so much cancer behind. 

News came to me as the doctors knew for sure, and the interview with the oncologist after surgery was the moment of truth.  I, the patient was being asked to take in the whole story and begin participating in treatment decisions.  My patient advocate had the job of sitting in on the meeting to help me listen and understand.  But it was made clear to me that I would be making the decisions if this was my wish.  Of course, it was. 

The oncologist was very good at the counseling part.  He laid out three clear alternatives for my general decision: Informed treatment decisions on my part, leaving treatment decisions up to the doctor, or choosing not to treat at all.  Being in my early fifties, I opted to be an informed, participating and treating patient, and encouraged the doctor to begin aggressively.  I was looking for life prolongment. 

I was offered either FOLFIRI or FOLFOX and a clinical trial.  The doctor offered no guarantee that any of this would be effective in my case, since some patients admittedly do not respond to chemo as could be hoped.  But I decided some odds are better than none.  The better statistics for first line treatment seemed to lie with FOLFOX at the time, so we went with that one.  It did arrest progression for about a year, so not a bad choice. 

Just remember when you are dealing with statistics what Mark Twain said, "There are lies, damned lies, and then there are statistics."

Statistics are perhaps general guides, but well might not apply to individual cases.  So beware of relying on them too much.  Choosing the "right" treatment then is somewhat subjective after all.  Oncology is hardly an exact science yet. 

I look back on each decision point that followed and see that there was my own grim determination to keep going with unpleasant treatments, and then the point would arrive when an allergic reaction, or a bout of intolerance, or news of progression would rule out that option beyond anyone's control.  Then it was no longer a decision, but more a situation I had to accept and own. 

I did search, ask and research options even my wonderful oncologist did not know of, which is how I came to do the TheraSphere treatment to my liver.  That has paid off very well in keeping the liver progression in check.  That avenue is still open to me if the doctor in Chicago feels it would help again.  So it pays to be on the lookout. 

So these two years of struggle and treatment have been worthwhile although difficult at times.  I am glad I took it as it came, day at a time.  It is easier if you keep you eye on what is happening in the now and not dwell on the things that might come, or your fears for the future.  This would have wasted a lot of my emotional energy, and many of the worst things you imagine don't ever happen anyway. 

The decision I accepted recently to end the aggressive treatments was "my" decision in that I take full responsibility for it, as I have for all of "my" decisions.  This is how I feel an adult should carry on a life.  I don't want my family, patient advocate, significant other or anyone other than myself to feel they decided something on my behalf that might turn out to be wrong, and then feel remorse or guilt.  They might well have tried to encourage me to continue with treatment in an effort to hang onto me somehow, to feel something proactive was still being done.  But, It was really inevitable, and I had reached a point where I knew it was right for me to begin to recover from the ravages of chemo.  I have been able to make this clear to them.  And it is the most personal decision I have ever had to make. 

Recovering means getting back some of my strength and being relieved of physical burdens so that I can live longer and reap the benefits of the treatments I worked so hard to make successful.  How do I know when I am making the right choices? Well, I don't really, but I do the best I can for myself, and I can only go by what I feel is right.  You can't always know.  Being wise does not mean you know anything.  But I sure know I feel better now.  And I know that the time I have now is due to the good effects of the treatments to give me time. 

Recovering is also for the people around me, my family and friends.  I hope they can have good quality time with me to remember later.  This makes my recovery time both medically sound and sensible for life, so that I can feel good about it on both levels. 

Speaking as the patient, with all due respect to my caregivers and dear ones, I will continue to do things my way.  Thank you all for listening to me rationalize again.  Helps me. 

Love, Elizabeth

-----------------------------
Date: Mon, 7 Nov 2005 01:07:32 EST
From: Elizabeth Parcells 
Subject: Re: Husband diagnosed last week

Hello ht jenkins from the UK,

I'm Elizabeth, and I'm glad you found this list.  There are many here who are sharing and have shared your present experience.  People with a lot of knowledge can help you look for all your options.  And there are a few like me who are cancer patients speaking from that point of view.  You are in the right place. 

My stage IV diagnosis came as a surprise because I did not feel seriously ill at all, though I had finally noticed the mass forming in my lower left abdomen.  I was sent for a CT scan quite soon and was in great suspense until the result came in.  With your new diagnosis, you are being asked to wait for test results to finish an accurate and exact staging.  This is very stressful. 

Learning to wait calmly until all the data is in is one of the hardest things to do in this situation.  And yet, with cancer and treatment, we have to do it over and over again as more CTs and tests are done to evaluate the best treatments and how they are working.  So we test, and we wait, trying hard not to go nuts.  I call us gals the Ladies in Waiting. 

Find a calm place to wait in, a favorite project, an interest, some music.  You can only think about it in sips at first, and G will need to keep his mind from rushing ahead to worries and wait for facts.  The most helpful attitude boosters are the old standbys of Hope and Faith.  One day at a time, one test at a time.  And the love you have forms the happiness you choose together.  I can tell you, all is possible, especially joy in life.  Don't let fear take that away from you. 

Welcome, Elizabeth

11/6/2005 10:09:42 P.M. EST, ht_jenkins@ writes:

Finally, a forum !!

We found out last Friday that my husband - Grahame (43yo) has large bowel cancer.  No history of bowel changes or anything like that, just that he had been anemic for a while.  His Hb was 7.7 and they thought maybe it was a slow bleeding ulcer, but his endoscopy was clear, and although he had been on 600mg iron tablets, his Hb dropped further to 7.1.  So our GP sent us to the hospital and it was confirmed on USS.  It is an 8cm mass. 

Obviously we are both devastated, but they think at the moment it is the most operable/curable type of cancer until we are told otherwise.  G is hanging onto that, and is extremely positive, its not so easy for me, particularly being an oncology/palliative care nurse. 

I am so used to telling my patients and relatives what an emotional roller coaster it is, but experiencing it first hand, is a different matter completely.  My thought process is all over the place, I am more than a little scared, scared for him, scared for my future, afraid of being widowed.  All sorts of emotions and feelings.  We have only been together 5 yrs, married for 2. 

I saw the wretched thing (tumour) when he went for his colonoscopy on Weds, nurses privilege I guess to be able to go in with your husband.  (some privilege eh?).  It looks nasty, although I must admit, in my experience, all tumours do look nasty.  He has a CT scan on Tues, to make sure it hasn't spread to his liver or lungs.  Then on Friday we have to go back to the hospital to discuss his biopsy and CT scan.  He is booked in to go into hospital on 21st Nov, to have an op on 22nd.  They are going to do a right hemi-colectomy. 

It couldn't have come at a worse time, I had had my gallbladder removed the week before he was diagnosed, as I had a stone in the neck of the gallbladder which was causing a lot of problems.  Unfortunately, I haven't been able to heal as well as I should.  With all the stress and coughing post op, I split the wound in my belly button, so am having that dressed every other day by the district nurse.  I am still in a lot of pain 2 weeks on. 

Hoping I am able to get some support from this site.  I am from the UK

-----------------------------------
Date: Mon, 7 Nov 2005 17:00:43 EST
From: Elizabeth Parcells 
Subject: Re: Husband diagnosed last week

11/7/2005 6:16:37 A.M. EST, ht_jenkins@ writes:  I now work in a hospice, which is why I am finding this so hard to deal with.  I've forgotten what it's like to deal with curable patients and seem to be focusing more on the terminal/palliative care side of things. 

I understand better now.  I certainly admire you for your hospice work, dedication and caring.  But it is not good to take it home with you.  We all know that these days more and more people are surviving cancer for many years or even indefinitely.  More cancers are curable than ever before, hope is everywhere.  So it is very important to wait for all the facts before concluding anything about a prognosis.  And even when things look bleak, hope is still there. 

In fact, hospice has changed recently, I'm sure you know, to not requiring a gloomy prognosis of six months or less to accept a patient, not wanting to play God.  Hospice is a service, not a sentence. 

I survived an inoperable Neuroblastoma as a toddler in 1953 until the present with only cobalt treatments to rely on.  How, no one knows.  I have gotten fifty years of borrowed time, so far.  All is possible.  There are many other great stories of survival here.  So you and G can take heart and courage from such examples. 

Hope you find this encouraging, love, Elizabeth

---------------------------------------
Date: Thu, 10 Nov 2005 01:45:35 EST
From: Elizabeth Parcells 
Subject: Re: lots of questions

Hi Imke,

To add a little more experience from a fellow chemo patient: I started out with FOLFOX treatment as already described my Kate M.  I got the two day fanny pack pump too.  After reading the pamphlets on the chemo agents I would be taking, I too had serious misgivings.  My first chemo day I had no less than four family members and my friend in the visitor chairs around me to offer support.  They all gazed at me the whole time waiting for something to happen.  But the first chemo went off with hardly a whimper.  So as the chemo became more routine it was just me and my friend Ric sitting there. 

Yes, the side effects did show up, but the pre-meds I was given kept things under control and after that I had things to take at home.  Personally I found that Zofran worked best for nausea, the Immodium resolved the diarrhea very well, and the neuropathy from the Oxalyplatin was annoying but not intolerable. 

Most take the chemo for a max of six months I suppose.  I was on chemo for two years.  By the end of that time, I was having toxic reactions to it and the cancer was not responding.  So chemo has been suspended in my case.  But it was a long time before it came to that.  Chemo novices, like I was back then, need to keep in mind that each patient is different in their reactions and that in many or most patients will not have the side effects so severely as described in that literature, if you check out the statistics, and to take a calm wait and see tack when undergoing treatment. 

Chemo is administered under close supervision by oncology nurses with the doctor never far away.  So rest assured, anything that happens will be dealt with promptly.  Chemo was effective for me and definitely gave me a significant amount of time that could not be promised without it. 

Good luck to you, relax and concentrate on getting better, Love, Elizabeth

-----------------------------------------
Date: Sat, 12 Nov 2005 11:30:24 EST
From: Elizabeth Parcells 
Subject: Re: We now have an angel

11/10/2005 5:15:35 P.M. EST, gleann@ writes:   Michelle is now at peace!

Regards, Anne Marie

Dear Anne Marie

My deepest sympathy for your loss.  Michelle gave so much and was given so much, living a full and productive life, her memory will live long afterwards.  Her influence will be felt in such positive ways into the future through your wonderful tributes to her, the Michelle law, the scholarship, and her moving story.  You have every right to maternal pride in your beautiful daughter.  My prayers are with you and yours. 

Love, Elizabeth

-----------------------------------------
Date: Thu, 17 Nov 2005 07:11:16 EST
From: Elizabeth Parcells 
Subject: Oh my aching bones!

Hello all,

I'm reporting to you on how I'm managing the pain in my back and broken rib.  My main problem has been my complete intolerance to morphine, which is usually the gold standard for controlling bone pain. 

Review: CC diag July 03, surgery, chemo for two years, the usual suspects FOLFOX, Avastin, Ebutux.  Radiation for bone mets and a successful TheraSphere treatment to the liver.  I have fought very hard the past two years.  However, the chemo was not effective anymore by the two year mark last month, and had become very toxic for me.  I was in a lot of pain from my bones too, so my oncologist and I decided to stop chemo and admit me to the hospital to resolve my side effect and symptom issues.  I was there five days. 

A week later, I took my doctor's advice and applied for hospice care.  Hospice specializes in symptom and pain management to keep the patient comfortable, and after all I had been through, boy, was I ready to feel better! The hospice people have been wonderful and so helpful, for whatever I need.  And I'm at home. 

The bone pain has been very stubborn.  I have had the best in radiation therapy including radio surgery, a pinpoint ray to the small mets near my spine.  This has helped, and hospice has covered it.  But I have a broken sixth rib and more mets causing considerable breakthrough pain when I have to get up and walk for more than a few minutes.  Trips to the bathroom for toilet or shower are agony.  I need help with everything, can hardly get out of bed myself. 

Problem: I do not tolerate morphine or any opiates at all.  The fentenyl patch we tried at the hospital caused a cardiac crisis and I became incoherent.  It wore off in about twelve hours, but that was the last time we will ever try opiates again.  So I tried to control the pain with Tylenol and Advil.  Not too effective, but better than nothing. 

Solution: After joining hospice, I was seen by a doctor who made a HOUSECALL!!!!!!!!! Wow, I haven't had a real doctor come to my house to see me since the fifties! He looked me over, heard my morphine saga, and then began to think about other ways to solve the pain problem.  I was already on some steroids post radiation, so he asked me to continue those.  Here is the cocktail he suggested

The steroid Decadron Celebrex Neurontin A Protonix chaser Tylenol as needed

The Neurontin was given in small dose at first and raised day by day to the therapeutic level so that I could adjust to it.  It has taken about a week to become effective, and I am now noticing good improvement of my pain and ability to move.  So I am very happy. 

I don't like the Decadron, when the dose is too high it harms my skin, makes my face swell up and causes GI problems.  But I am told it is important to control inflammation which helps the pain and prevents the mets from pressing on nerves.  So I try to keep a smile on my bloated visage.  We have backed off the dose so that my skin is healing and I hope the swelling will go down. 

The Celebrex seems to work well in tandem with the other meds and I notice no adverse effects. 

The Protonix helps my GI tract handle the other meds, and the Tylenol is taken when I feel achy. 

Now a little over a week into this regime I can get up by myself, I have less pain, and am able to sit up longer when at the computer or writing.  With less pain, I can concentrate better and have more energy.  Any improvement is very welcome to me.  And I have read on our listserver that patients have usually died before the bones could become involved, so I feel like an "old" cancer patient, beating the odds each day.  Feeling better is my triumph over adversity and the nasty beast. 

I hope this tale can help others of you who are dealing with pain and are sensitive to Morphine.  Apparently, there ARE other ways to control pain if you keep probing.  I am also having a reflexologist come to the house.  The foot an hand massage and the quiet time are beautiful.  I am doing lots of feel-good things to improve my QOL (quality of life) like splurging on pretty PJs and comfy bedding, eating things I love whenever I can, and generally pampering myself.  After the pain setbacks of late, it sure feels great to see improvement and fills me with hope for better times. 

Love, Elizabeth

-----------------------------------
Date: Tue, 22 Nov 2005 01:46:56 EST
From: Elizabeth Parcells 
Subject: Re: Colostomy

Hi Cecelia,

Sorry to hear about your father's illness and need for surgery.  I had a sigmoid tumor and now have a permanent colostomy which I have lived with for over two years now.  At first I was hardly thrilled with it, and it took me some months and some nursing help to learn how to take good care of it and get used to the new body part. 

But in time I have not only made my peace with it, in some ways I see certain advantages.  I have had many problems with my GI tract due to chemo, and have to say, the pouch lets me choose when I go to the toilet to empty my output, I don't need to sit on the john endlessly when I have diarrhea for instance.  My backside never gets irritated or sore and stays nice and clean because all the bad stuff goes into the pouch.  Now that I am stuck in bed most of the time, I appreciate my "front loader" even more.  I never soil myself or my bed.  And with an ostomy, I am less likely to experience certain cramps. 

Downside, yeah, it's a chore I don't enjoy keeping the spot changed and cleaned.  But I am used to it by now.  I like to joke a bit, that God had some good reasons to put the a&&hole in the back, and the little story about the fashion conscious lady bemoaning that she will never find shoes to go with that bag, y'know.  You can cry or you can laugh. 

If you need suggestions on ostomy care or products you can research, let me know.  You can look up these products online.  Any of them will happily send you free samples to find the best one for your father.  Special ET or colostomy nurses are standing by to advise you too.  Mainly, concentrate on your father's treatment and good health.  You will find the ostomy is not such a bad thing at all, but is actually part of the solution. 

Elizabeth

-----------------------------------
Date: Tue, 29 Nov 2005 01:40:15 EST
From: Elizabeth Parcells 
Subject: Re: Venting

Dear Nancy,

I feel moved to respond to your specific question:

"When did life get so complicated? Was it when the doctor told both of them, "It's treatable, but not curable!" I still find it unbelievable to think that a doctor, who is a virtual stagna, could deliver such devastating news to us that would change our lives forever.  What must it be like to be the bearer of bad news?"

I have stage IV CC diagnosed in July 2003.  At that time I was told everything truthfully and fully by my doctors, including the fact that my condition was treatable but not curable.  Hearing that I have a serious, progressive disease that will lead me down the difficult path of treatments and symptoms with an unavoidable outcome was very hard.  What would I tell my family? I knew they would suffer perhaps more than myself at this news.  The doctors had the relatively easy job of telling me.  But helping my family and myself over the news was going to be the far more difficult path.  It was time to plan my care and adjust to my new situation. 

The news that my death would arrive ahead of schedule shook me, of course.  Thoughts that flashed by me, I would not grow old with my sisters and brothers, watch my niece grow up, write a book, invent something, see China, retire...  But as my mind wrapped itself around the "news" I began to realize that I was merely being reminded of the universal condition of human mortality which all of us share and prefer to forget.  What had really changed in that regard? In fact, I was being given fair warning to put my life in order and properly prepare for what is the most meaningful moment in this life, the transition to the next. 

My family and I have struggled against the fact that I am going to be terribly missed, separated from them by an illness outcome.  I am haunted by the fact that, given early detection, this whole thing might have been avoided.  Two years of treatments to give me more precious time have been worth it, but very hard.  My niece is five, the sweetest child in the world, I must trust in her future. 

Back to that moment when the doctor broke the news to me: I did not find this to be cruel on his/her part, there was a surgeon and an oncologist involved in completing the diagnosis and prognosis reports, I was aware that it was their duty to tell me, a responsible adult, everything I needed to know.  They would have been severely remiss if they had not.  Would I really want to be blissfully ignorant of my prognosis, and would I have been making the right informed decisions as to my treatment and care? And if I had not been told, would not the doctors and hospital be liable for my uninformed mistakes, shortening my life? On this issue there is nowhere to hide. 

My status now is, after two years of treatment, the chemo has ceased to control the disease and, together with my oncologist, I have decided to end treatment, go home and join Hospice for the special care they can offer me now.  This moment was another kick in the head for my family and me, but I'm not in denial.  When I notice how I can't get along without help anymore, talk about a bed potato, I guess I need to have somebody around to care for me.  The changes in my condition take place faster than I can mentally adjust to them, so on days when I can't get up by myself and my dearest Ric has to hoist me out of bed, I shed a tear or two.  The day the bedside commode showed up in my room, I was unhappy. 

The truth stings.  Yes.  I am sitting in the middle of a whole lot of truth.  It's a cold bath at times.  But there are other truths that come to our aid, make us strong and confident in those great truths.  Faith, hope and love.  The power of life.  The high values we hold dear.  The priorities that float right to the top when we realized there are much more important things in life than seeing China.  Right now, comfort and quality time with those I care about are more precious to me than anything I could plan in the unseeable future. 

I write this as much for me as for you, venting you call it.  Well from my point of view and that of your brother and husband, they may be dealing with the news somewhat differently than members of their families, or even you as spouse and caregiver.  It is very important for you to listen to them, carefully.  Their wishes and hopes are what they will rely on for gaining peace and acceptance and the ambition to work hard on life prolonging treatments. 

Be sure they know that their decisions will be respected and followed.  I have my family in training for this.  And I am putting the legal documents in place to make absolutely sure my directives are followed. 

Patient choice, no matter how you feel or perhaps disagree, must be respected in my view.  I hope it is a long way off for your men-folk, but don't hesitate to get help in, such as hospice, to provide professional, supportive care when the time comes.  I have done this for myself where I don't believe my family would have, and I am glad my doctor urged me to do it in timely fashion.  Now I know that my family and dear friend are not totally saddled with a situation they are unprepared to face, and I am confident that I will be comfortable and cared for as I need it now.  Life is so much better knowing that.  I can smile and keep my life affirming sense of humor every day. 

I wish you strength, courage and wisdom along the way, my thoughts and prayers are with you, your brother and husband, to all patients and their saint caregivers and loved ones, we are all in this thing together. 

Love, Elizabeth

11/28/2005 7:55:50 P.M. EST, NSTeach49@ writes:  Hi all,

It's just one of those nights when I feel like talking ..... if you can listen, it's much appreciated. 

With the holidays approaching I begin to think about those things that I am grateful for and those things that send me "over the edge"! I am on two lists - colon and prostate - because my husband has advanced prostate cancer and my brother has liver cancer.  Fortunately, they both feel well right now.  My brother (58) resumes his chemo tomorrow in an effort to shrink his liver lesions.  My husband (50) is undergoing hormone treatment, which thus far, has kept his PSA low.  He will continue on this regime until March when he will have to go off the hormone shots in an attempt to extend the length of the treatment. 

When did life get so complicated? Was it when the doctor told both of them, "It's treatable, but not curable!" I still find it unbelievable to think that a doctor, who is a virtual stagna, could deliver such devastating news to us that would change our lives forever.  What must it be like to be the bearer of bad news? I vomited when I heard the report ...... both times.  Do you think the doctor was upset by that? Did it matter? Of course it did ...... their job is difficult too.  I wish I could go back to a time when spontaneity was taken for granted, and I complained about the mundane.  I wish I could be as "carefree" as I felt before the diagnosis of both my husband and my brother ..... but, of course, I can't.  I am grateful for many things .....  Christmas carols, my sons, my mother ............... the warmth of my comforter and my kitten purring at my side. 

Did you ever see a full moon shedding light on your yard at 4:00 am? It's truly beautiful.  It reminds you that there is a power greater than ourselves.  There is a universe that is beyond our personal problems and connects us with that power.  Am I rambling? Sorry.  That is the wonder of the Internet.  We are all one in cyberspace! Thanks for being there to listen. 

Nancy from NJ

--------------------------------------
Date: Tue, 29 Nov 2005 19:18:31 EST
From: Elizabeth Parcells 
Subject: Re: Venting
X-To: suewarner16@
 

Dear Susan,

I had the same honor.  I took care of my Mom and was there with her in her last times.  She died in my arms.  But lacking an advanced directive, or any other legal paper with instructions, we had to endure the intervention of the EMI, with resuscitation attempt and ambulance trip to the hospital, and waiting for a doctor to come in the middle of the night to make the pronouncement.  It was not a drama that anyone needed, least of all Mom who was dead when I laid her back down in her bed that early morning. 

What did I learn? Get your ducks in a row, that's what.  If you the patient don't make these decisions, they will be made for you, either by your next of kin or by the law.  And make them in writing in proper legal documents with witnesses and the whole ball of wax.  This is not difficult, in fact, Hospice offers services from their social workers to help you do just this kind of thing. 

My Mom was in some denial, and she "didn't want to upset the children" so she rejected signing these documents and would not let Hospice in the house.  Her care fell to me, and I was not prepared for it.  How could I be? She too would try to do things for herself, sneaking to the bathroom when I had told her to say put.  I would step away for just a moment, hear a sickening dull thud, and there she was, on the floor.  And no amount of scolding helped. 

She was a great lady, determined and independent: Admiral traits in a healthy person, but somewhat dangerous when you are a very sick patient.  When my diagnosis and prognosis where pronounced on me, and I gave the matter great thought, I realized that I could learn from and avoid repeating the mistakes, or shall we just say, the misconceptions we had been acting on in Mom's case.  I had an opportunity to "do it right."

My time is coming (who knows when) and hospice is here, doing a very fine job, and my family and I are getting the education in adjustment that we missed before.  My mother actually left us the example we or at least I required to make the right decisions for myself. 

Although I feel as if Hospice issues really belong on the ACOR hospice listserver, Kate permits me to speak of it here as a matter of common interest.  And the ACOR hospice list shows hardly any activity at all.  It is not possible to initiate any discussion there.  So bear with me.  This is where I am right now, I will endeavor to keep my posts relevant to all.  More thanks for letting me vent. 

Love to you all, Elizabeth

11/29/2005 1:49:03 P.M. EST, suewarner16@ writes:  I am so thankful that I could be there for Mom in her last days.  Was it easy, no, it was very difficult and until you personally go through it, no one can prepare you for.  Deciding to get care from hospice was a great idea and allows for a slower adjustment for the next phase for you and your family.  We received hospice late in the game and it was a crazy adjustment. 

I wish you a peaceful time and hope that you can rest well as a bed potato.  You have allowed me into a very special place through your posts as a patient and I so appreciate it.  It helps me understand some of Mom's resistance to or help and the medical aids they gave us. 

Take Care, Susan

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Date: Wed, 30 Nov 2005 01:29:43 EST
From: Elizabeth Parcells 
Subject: Re: Venting

Hi Fran,

What to do for the dying? Anything they ask you to do! I have a sister who is very big on nutrition and what we would call alternative curatives, the sort of thing we don't discuss on this board.  She is sure that the sugar I eat is very bad for me.  Well I guess she is right, in the long run.  But if a piece of cherry pie helps me with my pills and gives me a little moment of comfort and joy, hey, who cares if I'm feeding my yeast or my cancer or whatever? She needs to deal with her denial that it even matters.  Gimme my pie!!

No I'm not a real writer nor am I published.  I am inspired to write these days about the jouney I'm on that is so amazing compared to the others I have been on.  All that, the school days, the career, the personal travels, were all just trips.  Now this is a journey! Singing is out, and so I write.  I must say, it's cool to have readers. 

So on with the cookies and danishes, on with the massages and pedicures, Let's have the good times and plenty of venting! Feel good time!!

Love, Elizabeth

11/29/2005 8:02:03 P.M. EST, Franrauba@ writes:  Hi Elizabeth:

What a strong caring and inspirational individual you are.  I so admire your determination to best prepare yourself and your family for life's last journey.  I feel it is the best inheritance that we can leave them.  I too learned from my mother's death on what not to do for the dying.  When my husband became ill we also had Hospice who were our earth Angels and we fought to have them sooner rather than too late.  They not only helped with the practical things for a bedridden patient, but offered compassionate honest answers to questions.  I could not have been a good caregiver without them and I know my husband died free of pain.  You write so eloquently.  Do you have any published pieces? I wish you peace and know you are surrounded by love not only from your family and friends, but this list.  May the Angels watch over you.  Love, Fran

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Date: Sun, 18 Dec 2005 07:35:58 EST
From: Elizabeth Parcells 
Subject: Merry Christmas

Dear Friends,

This morning I woke up early to a box with over 200 emails in it.  I apologize for having let it get so full! Today I would like to make up for it in the old fashioned way by wishing you a very Merry Christmas, and a happy holiday with all best whishes for a healthful new year. 

I have been as well as can be expected and am finding my hospice experience very positive.  The help and care from the people there has been wonderful.  My whole family is here for the holidays and are not only a lot of fun to be with, (as always) but also are capable helping hands. 

My Dad is doing great.  You'll be happy to know my little niece of 5 years old is coming today.  So the presents are piling up, getting wrapped, and very soon a large Christmas tree will be emerging out the living room floor.  No Grinch is gettin' in here. 

"...and to all a good night."

Love, Elizabeth