I’ve crawled out of the oncology inpatient ward, muttering “IT IS COLD IN THE WINTER”, clutching pills of various sizes and counts, reclaiming the divot of my bed as my Throne of Illness.
(“It is cold in the winter”, besides being a certain type of passive construction that I despise, is the sentence I had to write several times a day while being monitored for cognitive side effects of the CAR-T cell infusion. I joked with the nurse[s] that I will be very confusing to the folks who one day take care of me in a long-term care facility…. “Oh, that’s Charles, he doesn’t talk much, but he does say something about the winter. Something traumatic must’ve happened when he moved north of the Mason-Dixon Line for university.”)
The meat-and-potatoes update: I’m home. I was released on day 9 of my treatment post-infusion, which means I technically beat the 7-10 day odds (estimate) for needing inpatient care. I was quite (and expectedly) feverish for a couple days, which was a sign that my t-cells were reintegrating and that my other white blood cells were tussling. Otherwise, most of my vitals have been fairly level, with the counts for other bits of my blood rising and falling in expected ways. The only present annoyance is fatigue and a dry cough. The fatigue is totally normal; the cough could be a side effect of the “living drug” now inside me (see one of the previous posts for more on that). All the various scans and tests continue coming back clear, so the hope is that it just goes away.
But of course, as I’ll be travelling back-and-forth to the hospital three days per week for the next month or so, either someone will find something, or I’ll get annoyed being asked about it day after day.
On the whole, the stay in the hospital wasn’t bad. The food was…not good, but I did at least have the ability to order off a supplemental menu. It’s just that when you have absolutely no appetite, it only takes a couple days before you’re known around the ward as the “Alphagetti and Diet Ginger Ale Guy”. I’ve been called worse.
So I must reiterate how incredibly grateful I am for the amount of effort taken especially by my partner to keep the little fridge in my room stocked with high-protein snacks, even if I didn’t end up finding many of them appetizing. For some reason I craved orange juice the whole time, and have probably drank more of it in the past two weeks than in the last two years.
One of the more interesting aspects of my stay was the request to have someone with me for large portions of the day—particularly, family who know me well enough to point to odd neurological quirks developing in their earliest stages. My partner and my brother know how generally surly I am, so they, for example, would be able to point out to the nurse if I suddenly became extra surly. I say this in a joking manner, but I am legitimately grateful for them just being willing to hang out in a boring room and watch YouTube with me for so many days in a row. And the community that surrounds us here to help take care of meals, care for my son when it’s needed, etc…. All of that continues now as I’m even more severely immunocompromised than I was before, and I just have no idea how we’d be able to do any of this otherwise.
(Especially childcare; we ended up pulling him out of daycare a week before we’d planned because one day another kid went home with a fever. Then we got a notice a week after that hand/foot/mouth was starting to go around, and my partner and I read the notice and just absolutely belly laughed. Obviously we don’t want anyone’s kid getting sick, but the feeling of “I can’t believe we made the best decision about something” is so sweet because it feels so rare as parents.)
So: unapologetically, that’s all for now. And thank heavens that’s all for now. I’ll repeat here the refrain of the nurse practitioner that has been attached to me:
Let’s keep it boring, Charles.
Thank you for keeping us informed. I hate that you have to go through all of this, but I love that you still have your sense of humor!