May 23: Can't really put an update here. I'd stayed up well over 24 hours on Friday so I just slept for 15 hours and woke up sore from my workout. It was like 11pm by the time I got out of bed. I fixed up the spelling in previous updates, including re-adding a few lines that had apparently gotten eaten in editing, and a simple summary of last week at the end of the entry. This is mostly for my own benefit to keep track of when I started something and what occurred at what time, but maybe someone else will find it useful.
May 24: Stretch, cardio workout. Tried to find any scrap of info I could on the statistical difference a treatment delay causes on OS (overall survival)/PFS (progression-free survival) for HL, but I can't. I can find combined studies where they have every stage, sex, age, and symptom lumped in, things on breast cancer/head and neck cancer (VERY different from HL), and yet nothing on treatment delay. The closest is studies in the elderly, but there are so many other factors with infusing old people with shitty chemicals like alternative swaps, existing conditions, weakened bodies, and dose reductions all across the board that they're not reliable.
The side effect and dosing standard charts state "the outcome's very reliant on sticking to the schedule and dose intensity" but the ONE study it cites to back up this claim is a paper that just compares ABVD to AVD, with a conclusion that it's cool to omit bleo since it does shit all except affect the cure rate by like 1%, and make people miserable with its toxicity for the rest of their lives. Which I already knew, and why I had it removed from my regimen entirely. But it has NOTHING to do with the chart's assertion at all. Combined with all of the other studies that include every stage, reduction, and delay across the board showing almost no deviation with the OS/PFS, I think I'm probably fine with this one extended delay to get my leg back in a semblance of working order, particularly when the plan is to get back onto a normal cycle schedule.
The last call with my onc is still in my head, and him saying that I can decide to "let nature take its course" out of nowhere when I'm talking about just pushing the visit back a week annoys the shit out of me for some reason. I already know I can do that, my ongoing ability to decide to just opt out or an hero is what's letting me stay calm enough to deal with this stupid bullshit in the first place. There's also nothing natural about lymphoma. The more I learn about this fucking thing, the more I see really discomfiting patterns. Everything's on the rise, even in pets. The more westernized a place gets, the more they seem to get this shit. It shows up a hell of a lot more often where certain chemicals seem to be found (waste dumps, burn sites, pesticides, &c.) and new cases seem to break out in clusters. Said before that I wouldn't be at all surprised if my neighbors or fellow workers around my job get diagnosed soon, or were recently.
May 25: Cleaned a bunch of stuff. Lifted things. Reported some updates on side effects.
Think the ALC worked, kinda forgot about it since it's just another pill I take and don't think about. It's not really a noticeable thing, you just suddenly realize that you haven't had any major nerve problems for a couple of days. I have only been taking the B12 supp when I'm not gorging on fish, so I dunno what effect that had, but I'd been doing that all week before the ALC and hadn't noticed anything happen until right after the ALC dosing. My knee still hurts and is stiff, so I think the chemo may be giving me osteoarthritis symptoms. I really hope it's not avascular necrosis. Either way, gonna eat more garlic and see if that helps since I've been lagging in my intake of that anyway.
May 26: I am extremely sore, but in a good way. Sleep schedule's messed because I'm trying to slide it back over to normalfag hours for the clinic visit. Shedding everywhere, tired of it. Right ankle's being a bitch. Not much happened today other than laundry and a shower.
May 27: Another sleep day. Not much to report since I went to bed in the first half of the day and woke up at around 2-3am the next day, on the 28th.
May 28: DOMS is pretty much absent. Did some stretches, lifted things. My hair is noticeably thinner; it started a while after the first infusion and gradually increased over time. I'll have an itch on my scalp and 1-5 hairs will come away. This doesn't SOUND bad until you multiply it by the 30 itches you get every day.
Heavily debating completely canceling my treatment and just seeing if I can water fast the last remnants of the tumors away instead of risking going through all of that again and dumping even MORE bullshit on top of my already damaged nerves. I seem to be able to manage them when they're small, so long as stress is under control. Officially can't deal with the smell of rubbing alcohol, like in hand sanitizer, which isn't the best thing in a pandemic. Keep getting random itches and pains around my neck, knee, ankle and wrists. One on my back came out of nowhere, turns out it was an acne spot remnant making a nerve freak out again. Sense of touch is mostly back in fingertips EXCEPT my right index finger, as well as my right thumb which actually seems to be worse for some reason.
The cancer place called with regarding a physio ref so I guess the nurse came through, no thanks to the onc. Going in on Monday so I can get them to check my gait and joints. Everything about this thing is pissing me off. Reminder to self to bring those letters and the prescription bag into the social office so the worker can see if they're being ripped off on drug costs; she was VERY interested to hear about the difference in marked med prices on my bag vs. what they had paid for.
May 29: Slept late again. Noticing a pattern? Any attempted changes to my sleep schedule always revert. This week's attempts at changing it back are being met with a lot of opposition on my body's part, but normalfag clinic hours don't give a fuck. I'm always wondering why I should, doctor clearly doesn't. Why'd I even do this? Should have just let it kill me. Think my light sensitivity has gotten worse, too.
Shit I've had reinforced from all this:
>only people very familiar with you will ever give a shit about you
>as they get used to your condition they normalize and become tired of it, even as it gets worse
>no one else cares unless you're dying or profitable, and there's a lot of crossover
>any concern is just job-related or knee-jerk because it's just "what you do"
>it's all about money
>the world sucks and no one should be trusted
>being alive is a curse and it only ever gets worse and harder to deal with
Don't care if it sounds angsty or edgy, it's all true. All I'm doing it putting it to words because I'm tired of having it sit in my head for decades. A kid in the fucking third grade shouldn't have been asking themselves if this was all there was to life, not contemplating dying in elementary school and being interested to find that they didn't mind the idea. All this work and struggle for nothing. The hilarious thing is that I'm not even alone in that. What's your legacy?
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