The infusion is in.
Now we wait.
Got my CAR-T infusion today. It was anticlimactic — the infusion took two minutes total (they spent more time taking my vitals before and after than they did giving me my hopefully-life-saving, new-and-improved, double-receptor-engineered T cells). But we'll take anticlimactic over eventful any day. Sometimes people have an adverse reaction to the preservative mixed into the cells, but I got out with no side effects other than some grogginess from the Benadryl. Thank you so much for your prayers and well wishes.
Thank you also for your prayers over lymphodepletion chemo, which many of you knew I was absolutely dreading. It ended up going great (as far as chemo goes), and was sooo much better than any other chemo cycle thus far.
Thus kicks off my hospital chapter. Being in this ward feels like learning to navigate life on an alien spaceship. Thirty hours and ten-plus vitals checks in, I am discovering the ropes: how to talk my way out of bed alarm (a dreadful state of high-observation where you're not allowed to get out of bed without an alarm going off), how to negotiate time un-hooked from the machines (still lobbying the stakeholders on this one, but I have high hopes for tomorrow), and how to catch windows of sleep between vitals checks. After negotiating with two different doctors and three different nurses to postpone their through-the-night checks at least once — to give me a six-to-seven-hour window to sleep — here I am lying in bed, unable to sleep, wasting the precious window I fought for. After trying for a while, I've decided to share my updates.
I'm tempted to tell you my growing list of gripes with hospital life. Instead I'll share some of my goals:
1) Breathing. Post-surgery, plus chemo and radiation fatigue, my lung capacity is low. My doctor put me on an incentive spirometer — a plastic thing you breathe into to test and exercise your lungs. I casually tried it for the first time tonight, assuming I'd barely need it. Turns out I'm supposed to be at level 2500. I'm at 500. I'm supposed to practice ten times an hour for the next few weeks.
2) One foot in front of the other. To aid recovery, I'm supposed to walk — nevermind that there's nowhere to go (I'm not allowed outside the vacuum-sealed, triple-doored CAR-T and transplant unit). Today my mom and I walked 22 loops around the tiny unit to hit one mile of steps. Well — my mom, me, and my IV machine, while I'm still hooked up around the clock.
3) Counting down. Now that I've gotten my infusion, we wait. My doctor expects symptoms to show up in the next week, if they appear (my trial's version of this therapy tends to hit a few days later than usual). I'm getting ICE-tested a couple of times a day: they ask me my name and what hospital I'm in, then ask me to count backwards from 100 by 10s. It's ominous to think that one of these days they expect me to get one of those questions wrong.
So here I am, thrust back to the basics. I wake up and I take deep breaths. I put one foot in front of the other, even if I'm not getting anywhere. And I recite who I am and where I am, multiple times a day. All in a day's work.