Oh how to start off this post. I could talk about another sunny day, or I could talk about watching Liam get a little award for his recent Russian poetry ability, or talk about Nico, Liam and Finn entertaining me with play this afternoon. Unfortunately, I will be talking about how tired I am of every time I feel like I might be actually creeping out from the potential avalanche of fear which is hanging on the slope just above me for the past year I am forced to switch back. I am again headed back out on to a treacherous slope. I have mentioned that my liver has not been liking some part of my changes in the last month. I had hoped it was meds, but full well knowing it could be GVHD. I wish I could say I knew the answer. Hell, I wish someone knew the answer. As with most issues this last year my opinion seems to be different than the Seattle team.
My liver enzymes did get worse over the past week. Last weeks slight improvement was a trick I guess. The interesting twist with the liver issue is that if it was truly GVH, or maybe clearly GVHD is a better description, than my bilirubin, alkaline phosphatase (another liver enzyme) as well as the tow enzymes ALT and AST would all be going up. Instead, only the AST and ALT are rising. I feel nothing that feels like a flare of the GVHD in the gut or skin which I have experienced in the past. In my heart of hearts I really feel like this is my body trying to cope with having boat loads of medicine dumped into for over a year. It is ready to be clear of the toxins with accompany the life saving components of the medications. My thinking may be flawed or clouded by my wish to just be off the immunosupression and antibiotics. Yet, it is tough to argue against while I start to feel so much stronger.
My other labs are looking fairly stable. My kidney’s are clearly liking the decreased cyclosporine as is my marrow as my hemaglobin and hematocrit climb back toward normal. Knowing this I can’t help but wonder if I have one more week of cyclosporine why can’t I just finish the taper and stop bactrim. No one can answer that question. The obvious fear is that if I have worsening GVHD in the liver it could be horribly tough to treat and waiting could be bad news. I just wish someone could tell me “if it is GVHD and you don’t get on it now it will kill you” then I would go along with increasing the meds. Yet, no one can say that and in fact if I am right that it is medication caused then I will be making the situation worse.
This whole year I have rarely fought back about the plan my physicians have laid out for me. I did balk early on about not getting a bronchoscopy for some respiratory difficulty which did turn out to be a virus as I had believed. I also argued about the length of my third chemo round but relented which lead to a prolonged hospitalization for liver issues (although that could have helped keep me in remission until the transplant). I fought about my nausea being worse just before I left Seattle, I accept the plan eventually, which the team changed and did an EGD anyway only to find out that it wasn’t GVHD but a CMV infection. So on the battles I have choose I feel like I may have a better record. I guess the alternative could be that by the law of averages I have to be wrong eventually.
We likely won’t know for weeks or longer who is right. I just hope we don’t find out quicker that one plan was horribly wrong. The fact is I really hate the mental gymnastics of being sick. I know that as a physician I may have been caught in this situation before. I usually try to explain very clearly what is going on. Today I circumvented Dr. Lui and called Seattle myself. This did little good as no one could answer me any further than to follow the protocols. I guess for this reason I am left with a flip flopping brain, full of doubt as I cartwheel through the air. I don’t know if I will land on my feet, and I sure do hope there is some kind of foam pit I am going to land in to soften the choice to follow the teams plan. What is so hard about this routine is that yesterday I felt so dam good. Today I feel like I just can’t get a grip on that elusive bar, or stick a landing to finish off what seems like a decent performance. UUUHHHHGGG! Fucking cancer!
Head Up, Heart Strong. I need a cure.