My dad just diagnosed

Dear Rae -- My heart aches for you and your family. It is a tough decision for your Dad to decline getting chemo, but from my husband's experience, it was a wise one for him. He had a large tumor in the right lobe of his liver (inoperable) He felt well and enjoyed life for at least six months without having to suffer the ill effects of having chemo. He lived life to the fullest, so to speak. Soon he lost his appetite and some foods (especially meat) did not taste good to him anymore. He was still able to enjoy foods that did appeal to him otherwise. His system obviously started weakening (he developed blood pressure problems) but he still did not feel horribly bad. He entered the hospital to be rehydrated and suddenly did have one evening of intense pain, which was alleviated with drugs. Sad to say, within a week he passed away, but when I look back, he was blessed at least with many good days that he might not have had if he suffered through the effects of chemo during that precious time.
Blessings to your Dad and you, his family!!!
Love & hugs,  Jean

Dear Jean -- Thank you so much for your reply.   I'm so sorry to hear about your husband.   The words seem so inadequate, but your reply is a great comfort to me, so I hope mine is the same for you in a small way, at least.

It is a hard decision not to go with chemo.  I feel guilty not telling my Dad to fight, but I DO think it is the right decision.

I am relieved to read that your husband was, for the most part, pain-free.   My Dad has lost some his appetite, especially for chicken and other meats.  He does still enjoy pasta, peanut butter, eggs.  I'm thinking protein shakes are a good idea for him.  He has lost so much muscle tone so quickly.

My Dad has two granddaughters (my daughters, 9 and 7 years old.)  He said his one regret is not being able to see them grow up.  I'm hoping he will at least have lots more good visits with them before he leaves us. 

Love to you and your family,
Rae

Dear Rae,
I think you will see that a lot of people on this board opt NOT to have chemo -- it's something I agonized over with my mother, and in hindsight, I would never have allowed her to do chemo at all - we just said we'd give it a try for a bit and if it was too much, we'd stop. Everyone is different and there is no right answer - I know I felt guilty advising my mother against chemo, like we had given up, and we were pressured by doctors to try it, but after her 2nd round of it, I just flat-out told her she was NOT going to have any more chemo, and she agreed. I couldn't stand seeing what it did to her, mentally and physically, and I believe it actually hastened her death by weakening her. Not to mention that she had to be dragged to the oncologist and made to wait for hours in a waiting room when she wasn't feeling well -- it was so dehumanizing and she wanted to be in charge of her own destiny and her own death.  I greatly admire the fight my mother put up, especially at the end when she had given up chemo, and I also admire those who continue different chemo regimens and keep fighting in that way. Some people tolerate side effects better than others. I would say that my mother's history of autoimmune problems made her a very poor candidate for chemo, and the same could probably be said for someone with diabetes - it complicates everything.
I'm just rambling on and on when what I really mean to say is please, don't feel guilty! It's your father's decision and you're doing the right thing by respecting his wishes. The guilt still gnaws at ME but I know in my heart that no one knows the right thing to do in these cases, and you have to make sure you have good quality of life for as long as possible. I know your father is making the right decision for his particular case, and as long as he's at peace with that, all you can do is support him and show your love every precious minute that he has left.

I feel for you and wish you and your family the best - I know there are miracles out there and I hoped for one for my mother, but maybe your father will be the next miracle - who knows? The only thing I would advise is that you make sure your father has accepted the possibility of his own death -- my own mother became very depressed near the end and it helped her immensely when she saw a hospice counselor and then a clergy member. Sometimes it's hard for parents to discuss these things with their children and/or family and it helps to have a disinterested party to talk to.

Again, all the best going your way,
- Joyce

Dear Joyce - Thank you for your reply - it helps enormously to have your support for my Dad's decision, and the affirmation that my mother and I are doing the right thing in not urging him to do the chemo.   I'm so sorry about your mother.   My prayers go out to you.

I completely agree - everyone has to make their own decisions, and there is no right answer.   It takes enormous courage to battle this disease with or without the chemo.  My Dad has already amazed me with his strength and ability to make this hard decision.

Our main focus right now is trying to preserve the quality of Dad's life and keep things as normal as possible for as long as possible.   Even with the weight loss and increasing fatigue, I think we are still in a bit of a state of disbelief and shock.  I'm worried about what will happen to his mental state once the disbelief wears off and if he continues to physically decline.  I think it is an excellent idea about the hospice counselor - that had not even occured to me.

My dad has gained two pounds this weekend.  We have persauded him to cut back on the treadmill at the gym - I found out he was burning 500 calories doing this (!!), which is a lot to make up if he's trying to maintain/gain weight.  Not to mention that he was exhausting himself.

My prayers best wishes to you and your family,
Rae

Rae,

My wife, Kathleen, was also seen at Mayo Clinic by Dr. Nagorney and he performed a second resection of her liver 3 years ago.  The cancer came back again and she has been through chemo and other treatments since then.   She is scheduled to begin another round of chemo (sorafenib) any day but she is dreading it.  Since Kathleen was diagnosed 5 years ago, I think is is safe to say that the chemo periods have been the toughest on her.  She has been very courageous during this struggle and if she ever said "no more chemo" that would be a brave decision also.

My only question after reading your initial post was whether your father had seen any other oncologists about this.  My wife has had excellent care at Mayo and we like their technical expertise.  But her primary relationship is with an oncologist in Mpls that not only provides a second opinion but is also a very compassionate human being.  Another physician's opinion may or may not be of value to your father.

The other thing Kathleen has done is see a cancer counselor a few times a year.  This is someone who sees a lot of cancer patients and has many helpful comments and suggestions based on what she has seen with her other patients.   It's often more difficult to get us guys to go for something like this but your father and/or family may get some benefit.  Kathleen and I sure did.

It appears to me your father and your family are really taking control of this rather than letting it control you.   I wish the best for you, your father and your family.

Bill