Ok I turned 22 and the most annoying thing is having to answer people when they ask “What did you do for your birthday? Was it fun?” First of all, no, nothing is fun because my body hurts and itches like crazy 24/7. Pretty sure you could take me to a 5 star resort and I would still manage to have a bad time. Secondly, I spent it where I spend most of my time: at a doctor’s appointment.
The patience I have had to have with my body this past month has been heartbreaking. The tightness and fluid in my abdomen, back, arms, legs…basically everything…prevent me from even simple tasks. Taking a shirt off might take five minutes. I just have to remind myself to stay calm, to breathe, keep trying until I get it. But I’m physically losing abilities that I can’t power through. Nothing can make my arm bend if it’s glued shut with GVHD.
The decisions I have made about my care and my life this past month have been excruciating. What is a life worth living? How much am I willing to risk dying (of an infection from immune suppression) in order to find a treatment that offers some relief? I have learned that I’m willing to risk a lot, and that suffering in this way is not a life to me. I’ve been on IL-2 about a month and started imbrutinib a few days ago (after a long, long insurance debacle that literally should have been illegal). It is very hard to believe that anything will work when so many things have not…tacrolimus, sirolimus, prednisone, rituximab, infliximab, ruxolitinib, photopheresis.. I’m exhausted.
I spent most of thanksgiving “break” at good ol’ CHO because they decided to admit me at clinic the Thursday before break. I really can’t blame them. I’m starting to retain a lot of fluid, unclear why but probably just general inflammation from the GVHD. I gained 10 pounds in a week. All of the fluid makes it hard to breathe, and I can’t walk more than a minute before I’m panting. It is also pressing on my stomach, so I spit up like a weird baby when I try to eat. I am literally being tortured. We were able to get some fluid off while I was inpatient for 5 days, and I went home on oral lasix, but I’m still 35 pounds heavier than I was in August. While some of that is probably because I was underweight after not eating all summer with the mouth GVHD, I definitely have not gained 35 real pounds in three months.
I have no idea what my plans are for the next few weeks, months, etc. I don’t know if I even want to finish the quarter. None of it feels like it particularly matters. Unclear if I’m depressed or if I’m just having the logical reaction to my life sucking so much or both (probably both). Never in a million years did I think I would be doing WORSE at two years out than I was at a year out. The self pity is getting real strong. It’s Giving Tuesday – give to childhood cancer research, Be the Match, or the Leukemia and Lymphoma Society if you feel inclined.
Here is a fun picture of an IV mishap: