Reunited, and it feels so good .... this is the little song lyric I'm humming to my orange velveteen sofa this morning. last night i finally came home from a week on the 11th floor oncology ward, dealing with what i went in for about a month ago, but which never seemed really to resolve. last week it reared its ugly head once more, only the head seemed much bigger and more ferocious this time.
so last time, we thought i'd developed colitis from one of my immunotherapy drugs (as more than 2/3s of patients take immuno drugs do), and it *was* that, but at that time it had not just you know, come into its fully and lustrous glory. holy smokes, what an unpleasantness.
i'm not getting into the specifics here-- too gross even for me. so if you know a poor someone who suffers from this or from Crohn's disease, please ask them, or just google it and then curse me for you letting you in on it.
i think i kept expecting the painful cramps to somehow resolve themselves, like, how exactly? i don't know. in some kind of magical, non-morphine way? and when it didn't resolve, well, that just jacked up my anxiety something fierce, and have you ever met me? my regular, normal anxieties are formidable.
but once they did many tests to rule out the possibility that this was any kind of infectious disease, i was able to start a course of steroids to stop the inflammation, and get off morphine and back onto tylenol or whatever. (wait, don't steriods suppress the immune system, and isn't suppressing the immune system the opposite of the trial drugs are trying in part to achieve? Yes and yes. but here we are.)
apparently a short course of steroids will not "significantly negate the efficacy" of the trial drugs. assuming the steroids do the trick on their own. if not, you get a one-time application of yet another immuno drug, and the combo usually does it. but that 3rd drug may or may not alter the efficacy. OMG whatever. i am feeling really teenager-y about this all right now.
next question: do people recover from a colitis flare-up and then safely return to their drug trial? Yes they do. And of those people, about how many have another flare up? how many never have colitis again? i'm sure you can't guess: it's 50/50! It's a like a Russian doll set of unknowns, this whole stupid business.
alas, if you return to said trial and do happen to get colitis again, well, the jig is up. you are out of the trial. and that makes sense, right? no medical professional can claim they're "doing no harm" if they continue you on a drug that does that to you. no one wants to end with a GI bleed, am i right? even if the drugs that cause it are the ones saving currently saving your life.
this is the kind of stuff that shakes me up the most, i think. like if i'd happened to break down that kind of scenario into small pieces at any point of reasearching the trial, i would've have come to the same conclusion. but i didn't break it down (did anyone?) and then i was there feeling like hellfire, being reminded again that so many of the key crucial details that direct my life are not in my control.
I can change my diet drastically to be so kind to my colon, but it only matters a little. It's not my body producing the effect, it's the drugs. they'll do whatever the eff they want to do once they're inside me.
people living with cancer and many other illnesses generally come up with all kinds of ways to distract our own dark thoughts. and if we're really good, we get some decent mileage from them (i, for example, "enjoy" trying to master laminated dough. it keeps me very very busy). but it still pisses me that we don't get to decide how many miles. just around the corner is some grim fact to realize or reality to be reminded of: that in some ways, even our magical thinking is not entirely our own.
i spent many hours awake at night in the hospital (because steroids) listening to my roommate snoring (wait what, you have a roomate? and she also has something related to colitis? you guys at least have your own bathrooms, right?) wishing someone else could feel this even if just for a few minutes: the white hot fury forged from every bad scan, terrible doctor conversation, and helplessness of every time you sat in your car screeching every unanswerable question to the steering wheel. wishing someone else could feel this and know that they can't back away.
but maybe you've felt this kind of rage & intensity already, about something else (cancer doesn't have exclusive rights to it as far as I know), in which case, I feel you, let me give you a well-masked, distanced hug.
thanks for hearing me out. this was a rough one. i'll check in my with trial doc in a few days and talk about going forward. so far it looks like i will be able to continue on the trial but i am sure there's lots more to learn around all of that. stay tuned hahahaha.
cancer still holding steady, no growth. so, worth it.
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