My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

You’re doing fine LIsa, you’ve got it right!
Much love to all of you x

Dear Lisa,
I can empathize with so much of what you’re going through, not just because we both have a dear parent with this terrible disease (see, I still talk about my mother in the present tense a lot – I just won’t acknowledge that she’s in the past sometimes).

I apologized for being a downer because I know people have different ways of coping and I don’t want to kill anyone’s hope, as we all need that to just keep going one day at a time. But like you, I had problems with my family making me feel guilty when I suggested that we should make plans for the end — my sister was in total denial, and our good family friend, my “adopted” brother, Bobby, got very angry if I suggested my mother wouldn’t bounce right back. I know how alone you must feel – as I felt, because I knew from my mother’s symptoms and blood work that she wouldn’t have much longer, and no one else knew and no one else WANTED to know. So I bore the burden alone and tried to put on a positive face for my mother AND for everyone else. It’s bad enough to watch your loved one die, but to have everyone around you in a fog about it doesn’t help either! I’m sure your resentment towards your siblings is well-justified and will get stronger as the days pass – anger is a great vent of all the bottled-up emotions you’re hiding from the world. But you’re a kind and reasonable person, so I know you won’t be eaten up by hostility and hatred – just normal anger, and I know exactly how you feel. Especially since you’re the one closest to your dad, you feel a sense of possessiveness towards him – not possessiveness in a bad way, but I can’t think of the right word — I felt it with my Mom, like I knew what was best for her and I was most in tune with her since I spent the most time with her, before and during her illness. I think I was right – my sister kept trying to drag her to acupuncture and try out new therapies on her, and my mother was just too tired and sick to do any of that. Even the welll-meaning people who kept urging my mother to “EAT! EAT!” drove us both crazy, as you can’t keep nagging someone who’s nauseous and can’t hold much. I put food in front of her, tried to get her to eat, without being too pushy (I hope), since she got so irritated with everyone telling her to eat. OF course she would LOVE it if she could eat and enjoy it – she tried – and the chemo made everything taste funny, so that made it worse.

Anyway, family can sometimes just complicate everything – I’m glad you have your Mom to be with you to discuss things realistically and go over the options and support you. And your doctor sounds wonderful – even if he’s wrong, at least he has a strong and educated opinion about what to do and what the diagnosis is and he’ll talk to you at length. That’s where it’s absolutely necessary that SOMEONE in the family research the disease – you can talk to doctors and get some answers and understand them. I was treated like an idiot by so many doctors – when my mom got an infection they just told us they were putting her on antibiotics and didn’t say why, so I asked if it was cholangitis, which I’d read about on this board, and they were so shocked that I knew that big word and they could converse with me! Damn doctors.

My mom never thought she wanted chemo at all, especially since her symptoms weren’t too bad, so I advised her to wait until she felt really bad. About 2 weeks after that, she was so nauseous and in such discomfort that she thought she’d give it a try. I called the oncologist and asked him pretty much for a guarantee that chemo wouldn’t make her quality of life WORSE – of course there are no guarantees, but of course an oncologist’s job is to push chemo, no matter what- I asked him what we should do if we didn’t get chemo, and he said, “I don’t know – but you wouldn’t be seeing me as your doctor anymore.” Oncologists only know chemo – it’s their religion – and hospice workers are the opposite and they always oppose chemo in favor of palliative care. Both sides can be too extreme and fanatical, as every case is different and some people would benefit from chemo, some not. It’s a really tough call to make and there is no right answer, because nobody knows. My mother also said she would try chemo because if she did nothing she felt like she was giving up and that depressed her – she was still holding on to hope, understandably so. So I guess it was worth it for her peace of mind, though that didn’t last for long. Long story short: you’re letting your father make his own decisions, which is the right, loving thing to do – but just make sure he’s not doing it to make the family happy and he’s doing what HE wants. And if you think the chemo is making things WORSE, then do what I did and just take over and tell him he has to stop – or at least take a break. It might be a relief for him to have the decision taken away from him at that point. Actually, my mother’s first chemo treatment, after the side effects went away, gave her about a week of feeling a bit better – so chemo wasn’t ALL bad. The second treatment just knocked her for a loop though, and I don’t know if it’s because she was so far gone with so many tumors, or it just sapped the last of her strength.

I’m telling you all this partly out of the need to go over my mother’s story till I’m blue in the face, but mostly because I hope it may help you when you have questions about your own course of action, and/or similar experiences and questions crop up for you. You’re not alone in this and I wish I could relieve some of your burden. You’re doing a great job of taking care of your dad: respecting his wishes, being there for him, savoring each moment. That is the greatest gift anyone could ever ask for – don’t let annoying relatives convince you otherwise! You are a very wise and caring person and your parents must be so proud of you – and relieved to have you there. When my mother came home to hospice care, 2 weeks before she died, she begged me, “Joyce, please stay with me – no one else knows what they’re doing , they’re a bunch of nudniks.” (My mother loved to call people “nudniks” and a word she coined herself – “jablooks.” ) It was my honor and privilege to be there for her when she needed it and I was touched that she asked me – she wasn’t the type to ask for ANYTHING as she was so proudly independent. I’m sure your father is relying on you and your mom in the same way.

I hope you can keep taking one day at a time and basking in the love of your father and enjoying him and his relatively painfree existence for a very long time.
-Joyce

Lisa, you stick to your beliefs, you and your Mom obviously are doing what is best for your Dad and what he wants. Your siblings are going to have to deal with their guilt or whatever in another way. Absolutely pray for miracles, but reality is not the same as hopelessness. What’s that line from “Steel Magnolias”? “I’d rather have 3 months of wonderful than a year of nothing special”, well, in our case I’d rather have 3 months of dignity and not suffering than a year of suffering for me or my family. I am going with chemo for now, but my circumstances are different, I am younger, probably a little healthier (for now) and I have a 10 year old son. But trust me, when things start going downhill, where chemo just looks like it is delaying the inevitable, I will stop. I want my son to remember his MOTHER, not some broken down shell. My doctor’s keep telling me “Quality of Life”, well, quality of life is not the same thing as extension of life.

Hi THECDR- I am glad that you felt comfort at reading my post. I try to be careful when I post because I don’t want the reader to feel that my Dad’s story will be their story… there are unique circumstances in every illness.

All anyone has is today. When things are running relatively smoothly, we forget ths and go about our daily lives not giving our mortality a second thought. For me, I always imagined having my parents with me until a ripe old age. When my Dad became sick I became aware of just how precious each moment is… the simple things were even more precious than the big events.

I have always been one to do my best to make memories… often surprising my parents with tickets to something so that they could experience something new. I would always buy the best seats and make reservations to the best restaurants to make the occasion as perfect as it could be.

The few weeks where my Dad was sick taught me that it is the togetherness that counts. We had a simple Christmas in the hospital- no one around, no decorations, no turkey… just a simple meal and the three of us sitting together and enjoying being with him. The only thing any of us has is the here and now. It is unfortunate that it sometimes takes these types of life changing circumstances to reinforce this reality.

I wish you peace and comfort… and what I said to my Dad’s oncologist when I first met him… I am hoping for a miracle and I am praying that God guides your hands in such a way that it is accomplished.

Brightest Blessings,
Missing U

Hi Lisa- it looks like we were both posting at the same time… I posted just prior to your last one… I guess, I was hoping to encourage you with my response.

I agree with you wholeheartedly, each person is different regardless of the statistics presented.

I am so glad that your dad is eating better and the pain is being managed… this is truly wonderful news!!!

Enjoy the precious moments with your dad and if it is appropriate to say to him… please let him know that he has a group cheering him on in cyberspace… if not, just give him a hug from us…

Missing U