1 (edited by Lisa Mon, 21 Jan 2008 13:35:24)

Topic: feeling guilty about feeling good

I was dx with ccc in August 2007.  The symptoms were severe itching and jaundice, and a CT scan and MRI confirmed the dx of bile duct cancer.  Since then, I've been through radiation combined with Xeloda, and am currently on Xeloda and Gemzar.  I have a stent in place which seems to be doing its job.  One thing that is kind of weird is that my tumor markers are in the normal range.  A blessing is that my liver seems to be functioning currently at an almost normal range.
I feel good - in fact I have to remind myself that I have cancer and can't do some of the things that I want to do, like go skiing.  Reading this board, I feel guilty about my continuing good health, but I want you to know that ccc, in some cases, may not be absolutely devastating to your health. 
I wonder if it is possible that the prayer/faith/medical treatments have or can shrink the tumor so much that it goes away without surgery?  I've really not altered my diet except to eat more fruit and veggies and stop drinking alcohol and cut way back on caffine.
I am trying to stay positive and hopeful for the future.  At 45, I'm too young to die - and I owe so much money I can't afford to die!  smile

Re: feeling guilty about feeling good

Lisa - you should never, ever feel guilty about feeling well or having a positive experience so far. Even if one lives to be 100 there are never enough days in life and we should strive to enjoy every single one postively!

One thing I regret my dad did not do while he was still in good health was take as much advantage as he could have. While we spent great quality time together, travelled and had many conversations I feel we could have done even more. He was always too cautious and reserved and I think he could have been happier.

I have always believed that we get one shot at life and every day is a blessing; living is a verb and doing it to the fullest should be your priority. This is important not only for you but to your loved ones who will be happiest when you are feeling well.

I hope you continue to feel great for many, many years and that you ask yourself this question many times in the future.

Best of luck!!!!!!!

Re: feeling guilty about feeling good

Amilcar---- Loved your post!  Lisa I can only say Dito to what Amilcar wrote.  I too have had many guilty feelings of being such a long term survivor and seeing such great people being stricken and taken away by this disease.  I often ask why is this disease taking me down so slowly.  I then count my blessings and tell myself, this is the way it is meant to be and hopefully each day I still hang around may be a benefit to others in some way.  Maybe I'll recieve a miracle who knows.  Don't feel guilty Lisa; just thank God and cherish the gift of each and every day we have to be with our loved ones. Those who have already left, are no longer suffering and in pain and I Thank God for that also.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: feeling guilty about feeling good

Lisa,
  I'm glad you are doing so well. I understand your feelings because I have mixed emotions sometimes  posting about my husband being a "miracle" as far as I'm concerned. He went through the same treatment as you followed by brachytherapy and has been a great success story so far.!9 months and no sign of the tumor and no treatments for 14 months. It's very hard to read all of the posts from the grieving families because I keep wondering when things are going to fall apart! But we can't do that- we have to be happy and enjoy each and  every day. Continue everything you are doing and I would check into some supplements if I were you. My sister-in-law was diagnosed with recurrent colon cancer in August and had been having a lot of pain and problems with protein in her urine which was keeping her fron getting her Avastin. She started on the regiment of supplements and foods that I have been giving my husband about 5- 6 weeks ago and this past week was the first time she had no protein in her urine and all of her bloodwork was good. She has more energy and has not had to take any pain pills for more than 2 weeks and can even sleep on her back which she couldn't do before.She can no longer feel the swollen lymph nodes in her abdomen either. Prior to starting the supplements there was some shrinkage but nothing significant.They were just hoping to keep things stable.The worst thing is the nurse flipped out when she told her what she was taking now and said she should quit immediately but when my sister-in-law asked her about the bloodwork and she had to admit that it was better than it had been in 6 months she didn't know what to say! As far as my brother and sister-in law and we are concerned if they aren't going to promise a cure and  are telling you that you are going to die you really have nothing to lose and everything to gain.At this point I would have a hard time even going along with the whole chemo regime. I really wonder whether it actually causes the liver to fail.It would be my husband's choice as it is yours.I do think some people are simply able to handle it better than others. Take care Lisa and keep up the great attitude!!  Mary

Re: feeling guilty about feeling good

Dear Lisa,
Ditto to what everyone said, and congratulations on doing so well! I can honestly say, as someone who lost someone to cc, that I'm SOOO happy to see a success story - I don't begrudge it all, and it is uplifting to myself and others to hear that this horrible disease can be beaten back. Keep posting your good news - we love to hear it  and we NEED to hear it!
-Joyce

Re: feeling guilty about feeling good

LISA, never feel bad about feeling good!  I remember the first few days after I had stopped the Tarceva, it was almost like I didn't have cancer at all!  Then I started feeling guilty, as if we're supposed to look and feel sick all the time, hogwash.  Feel good, feel great as a matter of fact and tell us about it, it's a message of hope that we all could use.
Barb

Re: feeling guilty about feeling good

Good news is a blessing for all of us. Feeling good is a blessing to all of us. NO GUILT and tell us all about how wonderful you feel. Hope is often in short supply and it is the miracle drug.

KRis

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: feeling guilty about feeling good

Lisa,
This is a post I wish I had had the presence to write.  I feel so fortunate to have drawn a long straw but I feel so keenly the loss, pain and suffering of so many of us here.
We are truly a community with all the love, loss, joy and pain of any family or community.  Thanks  for that reminder and I join everyone else in loving to hear your good news!

-Peter

p.s.  If you all see less of me on this board for a while it is because I am away from home helping my 90 year old Mom who just fell.  I don't have internet where she is but will try to check in via a local library as I'm able.

Re: feeling guilty about feeling good

Would like to add to all the other great posts that I also love to see good news coming this way.  It is that what makes us surge forward in the quest of finding early detection and treatments for this cancer. 
Marions

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: feeling guilty about feeling good

We all need the encouragement of good news.  Please be sure to share with us.

Karen

Wishing all God's blessings!

Re: feeling guilty about feeling good

We went skiing yesterday at Mt. Baker.  I had a blast - I went down about 7-10 runs before basically collapsing of exhaustion!  Overextended myself, of course, but who wouldn't on a perfect ski day?  We'll see what the blood counts look like tomorrow smile

Re: feeling guilty about feeling good

Lisa -

Glad you had a great time.  Keep posting about your progress.

It's obvious that prayer is a mighty powerful tool.

Steve

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   God give strength to everyone affected by this terrible disease.

God give strength to everyone affected by this terrible disease.