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Paula,
I’m so sorry to hear what you are going through. My dad died a week ago at the age of 81 and his final stages of battling this disease were very similar to what you’ve described. I can’t offer much wisdom other than to say doing all you can to make your dad comfortable is the best you can achieve. Your father sounds quite lucid and part of his concerns over morphine may be related to him losing that mental awareness. With his body failing I can’t slight him for wanting to keep his mind intact and focused.For what it’s worth, my dad was a fighter all his life, until one day not too long ago he told me that he wanted to die. That was hard to hear but I admired his willingness to look death in the eye and say “I’m ready.” I understand what you are feeling but in no way is your dad simply giving up. On the contrary. He is a brave man facing the most difficult step of his life and acceptance is an important part of the process. There is a time and place when the battle will be over. For some the fight will wage on for years. For others the time has come. Your father’s ability to recognize what lies ahead is a life lesson he is giving to you.
He is lucky to have you by his side through this and, as you see this through to the end with him, he’ll depart this life knowing he succeeded in raising a fine daughter of whom he is no doubt very, very proud.
Tiffany,
I understand what you are feeling. My dad died on Wednesday and, towards the end, his decline became steeper and things seemed to happen faster than we could grasp. But rest assured, pain can be controlled and I do not believe he suffered in the end. To us, his comfort was paramount. In his final days we could see him slipping away until one morning, he breathed his last breath. You needn’t be afraid. This is the natural process for all living things. Just take comfort in knowing your mother is very proud of you right now, and she always will be. It sounds like you are doing everything right.Thanks so much for your kind words. It’s never easy losing a loved one, but knowing my dad is no longer suffering and that we put up as good of a fight as possible makes it a little easier to bear. As we sat by his hospital bed shortly after he had died, there was this strange empty moment in time. After the months of coordinating, orchestrating, scheduling, and researching, it suddenly hit me: It’s over. There’s nothing for me to do now but let him rest.
The last 6 months have been tough and sad, frustrating and distressing, but there also have been some flowers in amongst the weeds. I’ve learned a lot and hopefully absorbed some of the kindness, wisdom, and simplicity of self that was my dad.
This discussion board is a marvelous resource for anyone with a connection to this rare and devastating disease called cholangiocarcinoma. It just saddens me it’s so desperately needed.
In hindsight, I don’t see it as we lost this fight. The deck was stacked and the odds all but impossible. But victory isn’t measured solely by winning. It is earned when we never surrender and when we willingly enter the battle, either for ourself or for a loved one, knowing death will inevitably win. We never gave up on my dad and I know individuals like each of you and everyone who enters the fray against this adversary called cancer will never give up either.
This morning at approximately 9:25am my father passed away. The end came quickly and peacefully with his wife by his side.
Both my sister and I were en route to his bedside when he died. While we were both too late to be there when he finally let go, my sister believes that, while he wanted his wife with him, he didn’t want to die in front of the kids. That’s most certainly something my father would do.
We are still taking all of this in and the coming days will be difficult, as many of you already know first hand. Perhaps it is some small solace that my dad chose this day, February 29th, as his last day on earth, knowing the date comes around only every four years so there will not be the yearly anniversary of the day our father died.
It is so very sad to have my father gone. But like all living things, he will always exist in the universe in some form.
Goodbye dad.
In the last two weeks there have been a few better days mixed in with several bad, but since the weekend my dad’s health has declined precipitously. On Friday he managed to sit upright in his wheel chair for a short while, still able to smile at my bad old joke about the panda that walked into a bar. As of this afternoon, he is prone on his hospital bed, drifting in and out of consciousness, his eyes are closed, and breathing heavy. He is all but wordless. Because he is unable to swallow his pain meds, he has been shifted to morphine.
We know where this is headed and, at least in a general sense, know what to expect thanks in large part to this wonderful community on cholangiocarcinoma.org. We’ve prepared as best we can and now all we can do is make him as comfortable as possible in the days ahead.
Forty years ago he was diagnosed with melanoma and was told he had six months to live. Despite the odds against him, he won that battle and was able to see his two children grow up and he lived to grow old with the love of his life, my mother. But every story has an ending and this one is in its final pages.
He may not even realize this now, drifting in and out of his hazy morphine sleep, but he is teaching his children one final lesson. How to die with dignity and grace, and how to bid a proper farewell to a honorable life well lived.
Sharonlee,
I understand your feelings that you want to do all you can by exploring every option. I can tell by your posts that you are doing a great job taking care of your mom despite the obstacles in front of you. She’s lucky to have you on her team.
Take care.It seems things keep sliding downhill. We went to the doctor yesterday and, as I suspected, he was too weak for chemo. I had pre-briefed the ONC and this gave her a good opportunity to broach the subject of “what’s next”. My dad was very straightforward with the doctor and with us. He’s tired of fighting and wants to quit. He said that if he could just go to sleep now and never wake up, he would. His weight keeps falling, his physical strength is all but gone and, as of this morning, he’s now starting to complain of significant and specific pain. This from a man who has had severe scoliosis his entire life and never complained about that, so we know he’s hurting. I understand and respect his feelings regarding his future. We now have the information to begin exploring hospice and our main focus is on making him as comfortable as possible. I’ve also reached out to the ONC and am taking immediate steps to address the newly appearing pain issues.
I wish there was more positive news to report. But like so many of you who have witnessed the awful trajectory of this disease, you realize there’s nothing that can stop what’s happening. So staying focused on making my dad comfortable and letting my mom know her kids are there is what’s important now. I can’t imagine what’s going through her head now as she faces losing her husband of fifty eight years.
Thanks. I appreciate the concern. I actually have a message out to the doctor to ask if addressing the ascites will help any of his symptoms. I suspect that if he isn’t healthy enough for the chemo this week, the ONC will segue that into a discussion about hospice.
No real progress to report. His cough has diminished a bit. The doctor feels it is likely bronchitis. Other than that, he keeps getting weaker, sleeps all the time, has no appetite and only forces himself to eat so that my mother will eat something. He is unable to get into/out of bed or even a chair without help. Some abdominal pain, although it seems non-specific. Edema and ascites as well.
We are scheduled to go back to the ONC on Wednesday. He has decided against the liver directed therapy so ONC wants to put him back on the gemzar since it seemed to be the best weapon we have. (Very slight tumor growth in 6 months.) Not sure if he’ll be up to it or not.
I know these symptoms sound a lot like what others have witnessed with their loved ones and things aren’t looking great. I don’t know if it’s unusual, but his numbers on paper (liver panel, CBC, etc.) still aren’t all that bad. But lab results only tell part of the story.
Lainy,
Thanks. I do maintain a strong separate line of communication with the ONC (as I do with all the doctors) but haven’t talked post x-ray. The issue of hospice has been brought up by the ONC as well as the GP, the interventional radiologist and the surgeon, but there’s still a large amount of denial still at work. If it comes down to it, I will do the advance scouting if for no other reason than to have the next moves planned, whether they are needed in 2 weeks or 2 years.My sense is, this just needs to be given a couple days to play itself out to see what direction this is heading. I know we all wish we had the script for how things are going to play out so we could act preemptively, but we don’t.
Haven’t posted much since there hasn’t been much new to post about. For the most part, he’s been doing well, considering. Normal routine of chemo and constant fatigue with general malaise seems to have been his biggest complaint since November. (He has lost almost 20% of his normal body weight.) The doctor put him on a daily does of steroids and that seemed to keep energy level from falling further. Because he’s been holding up fairly well, they felt he was a candidate for liver directed therapy since his last scan showed limited tumor growth and measurable tumor necrosis since the previous scan in September.
However, not sure if he picked up something in the hospital or if it’s coincidence, but following the mapping for his procedure, his condition has worsened by magnitudes. (They hadn’t gotten to the radiation stage so side effects from the directed liver therapy were ruled out.) He now sleeps a lot more, has had a couple days where he could barely get out of bed (or ended going back to bad), is back in his wheel chair to get around (he was able to use a walker at Christmas) and he developed this horrid, wet-sounding (but non-productive) cough. Hearing it, our first thoughts were pneumonia although the chest x-rays didn’t show anything. Concurrent with this decline and with two weeks of “very bad days”, his outlook and optimism has faded immensely and his comments have gotten more grim. He doesn’t have a fever but does have abdominal pain. No appetite to speak of either. (Up to now, he’s wanted to eat.)
Not sure if this is a passing virus (or bacterial infection) or if it has other significance, but the cough is troubling. Any experience with these symptoms?
Right now, the doctor is giving the antibiotics time to work to see if that takes care of the cough.
Marion,
A liver transplant isn’t currently on the horizon, but potentially chemo-embolization (or other forms of liver-directed treatments still tbd) to augment the systemic chemotherapy.Thanks. As always, I will be asking plenty of questions.
Part of the reason for meeting with the interventional radiologist now is to bring him in the loop. Both the oncologist and the surgeon (who saw the tumor with his own eyes) feel my dad is a viable candidate for directed liver therapy if his overall health holds up. So we do have the CT scan that was completed in September as well as a first-hand report from the surgeon to give the interventional radiologist something to work with. In all likelihood, he probably wouldn’t start a procedure until after the second round of Gemzar, which would be about the same time as the next CT scan is scheduled to run. So, more or less, we’re trying to choreograph this on multiple fronts.
Another part is, after I asked the surgeon (who my dad respects) if directed liver therapy was an option and he said “definitely”, and my dad’s spirits lifted. When the oncologist repeated this endorsement, they went up another notch. So simply knowing we have one more weapon in our arsenal means the fight is far from over, so that helps too.
For what it’s worth, his ad hoc team of doctors are concerned about maintaining as much quality of life as possible and are aware that his circumstances as a senior are different than those of someone younger, but at the same time are aggressive enough to be willing to try things as long as my dad wants to keep at it.
Not much news to report. CBC is improved, due no doubt to last week’s transfusion. The oncologist felt he was doing well enough to have a third session of Gemzar, which I think came as a bit of a surprise since she was originally talking about one week on/one week off or, at best, two weeks on/one week off. So this counts as progress. Still no discernible side-effects from the chemo itself, although fatigue seems to be omnipresent which I assume to be “normal” from the tumor.
Also, I reached out to the interventional radiologist who performed his liver biopsy just to get a sense of whether setting up an appointment for him to take a look at my dad to see if liver directed therapy might be on the table. He was amenable to that so the appointment is in two weeks. We shall see.
He’s also scheduled for a CT scan in five weeks. That will give a good picture into how this fight is going.
Mainly, I’m trying to make sure we’ve covered all the bases and not overlooked any options, even if they are not viable.
Dear All,
Well, he is feeling better today. (Yesterday was pretty bad.) Covered a range of issues with the oncologist. He is on steroids, but she increased the dosage to help address the lack of energy. His CBC results are mixed. White blood cell count is back into the normal range, iron levels back to normal, although his hemoglobin is down from last week to 9.1. (It was 9.8 a week ago and 13.8 in August.)The doctor gave him the option of skipping this week’s chemo but he decided he’s willing to go with the two on/one off schedule. Figures it’s best to charge ahead as long as he can. He is scheduled for a transfusion on Friday. His first. Hopefully this will address the hemoglobin issue. It’s for one unit since his legs are still swollen and she didn’t want to add to the problem by introducing too much fluid.
The funny part is, he said he had a taste for fried chicken. As someone who hasn’t had an appetite since summer, that was good news. I snuck out of the room while he was getting chemo to ask the doctor to give my dad “permission” to eat something deep fried and not feel guilty. She obliged.
