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Monday, June 29, 2020

July 3 Updates

 tl;dr: Losing more hair, can't tell if it's more than usual though. Fucking with my sleep schedule sucks, normalfag hours are anathema. Turns out the DEX isn't actually a part of my regimen and was just for nausea control, so I'm probably just gonna drop it entirely. Tried it for this go around, no nausea so far but lots of liquid waste during and after treatment. Mind is clearer but body is a lot more tired. I'm on normal food again, no nausea still.


June 27: Not much happened since I'm just sleeping/not sleeping to adjust so as to be able to make it to the next appointments. Wanted to jog but I still felt too tired, so I just wandered a bit and looked at the moon. Legs are still swollen.


June 28: Bottom eyelids have joined the swell again, great. I love looking like Steve fucking Buscemi. Cleaned everything so I don't have to deal with it when I'm at my worst, as usual. Weirdly, I feel more normal today and less spacey than yesterday. The bump on the side of my neck is indeed smaller. Most of the shrinkage seems to happen when I'm not actively recovering from them dumping shit into me, so like the last 2 days before they do it again on a regular schedule. May just quit after this depending on the CT scan, but that was the plan anyway. It's small enough where I may be able to nuke the remainder on my own without all this bullshit.

Took a bath, lost a lot of hair. Doesn't fucking stop. Really tired of pulling hairballs out of the carpet and seeing it all come out in the bathroom. Can't tell if it's more or less than usual in total since I only seem to actively shed when I touch it. Could be compound shedding, I have no idea.


June 29: Blood test at some ungodly fucking hour in the morning. Dunno why it has to be so early, mornings always make me feel nauseous. Extra motivation to keep fasting since it gets rid of that, but I just stayed up all night to make sure I was lucid and did some stretches. The place they poked for blood testing hurt for a while afterward, and I'm hoping it doesn't come back. I reported all of my side effects, and the onc wants to go ahead with 85% Vinblastine. He also said that drinking green tea as a home diuretic should be fine on my regimen, which goes against the "don't drink caffeine teas" rule everyone was spouting, and that's not the only change. Contrary to what I was previously led to believe, the Dexamethasone is NOT a part of my regimen insofar as fighting the cancer, though it can contribute since it does fuck up that cell type. It was primarily for nausea control, apparently. Even though we went over this and it was pointing to the contrary. That means that I have, essentially, been torturing myself with a corticosteroid for NO FUCKING REASON FOR TWO MONTHS. The onc said he wants me to take them on treatment days for the nausea control, but if that's the only reason I outright said I'm probably just going to drop this shitty garbage and light the remaining pills on fire for science. Fuck steroids. I'm so tired of my insides turning into a waterbed, getting covered in acne, and not even being able to sleep normally for a week.

My neutrophil count was much lower than the previous round, which is probably why I was so tired. My sodium and potassium were kinda low as well, so I've gone back to drinking a bit of salt water every day to equalize shit. Without the fucking DEX I'll likely swell a lot less, so I won't have to be as careful with sodium. Got my hands on some pretty nice resin and oil that kicks the shit out of the stuff I've been enjoying up until now. If I could get my hands on a certain gold isotope I'd have all three wiseman gifts. Really tired, debating whether to do my lifting now or after I sleep a while.


June 30: I slept before doing my workout. I've decided to omit the Dexamethasone for this round to see how it goes. Most times Akynzeo is used in combination with the DEX in order to block a bunch of pathways that cause nausea and the onc said it's used in combo with it, but looks like non-Hodgkin's patients are on a regimen with a similar emetogenic profile and they've been tested without DEX administration in conjunction with the Akynzeo, and the results were just fine. I'm fairly confident that my lack of eating can help with the acute problems and cover many delayed effects, may as well put it to the test.

Since they allow visitors now, I had one of my very few irl contacts come along. We mostly just shot the shit and it was great for taking the early stress off since that tends to be the worst. It helped that my nurse for the day was a personable sort that liked novel talk, so we all chatted about stuff. She asked what I did before this and thought I had a medical background; not the first time I've heard that, maybe I can spoof my way into a quack position someday and make bank. I told the nurse that using an outer arm vein would be worth the time investment and it was best to do this. Turns out it wasn't harder to find veins on the outside, and there was a big one that was visible even without a tourniquet with great blood return. It kept poking and doing wee stings, but we think it was just irritation from the cleaner that was used mixing with the usual needle-end poke bullshit. Lots more tingling in my feet on this round of increased Vinblastine, not the best sign. The sting went away, I just had an occasional twinge if the IV angle changed too much, along with some ache near the elbow during the always awful Dacarbazine drip. My left leg did get fucked again, particularly at the joints, and the bottom of my right foot hurt, but neither are new and I only have to keep an eye on the degree. Funny how smooth shit goes when people actually listen. I made sure to thank the nurse by name for doing so.

The differences I noticed without the DEX was that I was more alert in general, and less tired by the end. Normally I would wait to type this out, for example, but I just got home a few minutes ago. Pretty much no new swelling so far. No nausea, though I did feel a weird pressure, like the water I was drinking wanted to come up... almost like it couldn't roll over into nausea? Turns out I just had air trapped in there and releasing it fixed the problem. Another difference was that I now had to go to the bathroom for two reasons rather than one. I knew the DEX constipated me, but I didn't think it prevented that kind of thing during a round of chemo. When I close my eyes, some of the fatigue goes away, so maybe my light sensitivity is contributing. So, my hypothesis about the Akynzeo and fasting taking care of the nausea seems to be holding out so far. The acute phase is over, now we just need to monitor delayed.

On that note, I did take a B12 supplement to see if it combats the neuropathy. There's other ingredients in there, but I'm pretty sure a small shot of sucralose should be fine as that doesn't cause an insulin response, so I should still stay in the proper state of avoid any nausea. Slathered some lactic acid on my legs to ease the bit of swell I got from all the fluids. Asked a nurse about the hair, she said I'm ahead of the game if I have any, so a full head like mine is really damn good. Apparently it most often tends to go in large amounts by 3 weeks; a person's scalp will get really tender and then shit just starts falling out when it's fated to all go away, so there's a very good chance I'll actually keep a good bit of my hair through this.

Went to bed since I was tired, though. You have no idea how nice it is, what a blessing it is, to actually be able to fall asleep when you're this worn out. The DEX would have me suffer through at least 6 more hours before I could nod off. I slept for about 4 hours and was awoken by some malaise, that pseudo-nausea that tells you that you need to go to the bathroom because there's something in your intestines it doesn't like. It's the same sensation I had when I got the food poisoning that kicked off this whole thing that says, "go to the bathroom right now". I followed its advice, and it was around this time that my temperature spiked enough to make me sweat, which isn't unusual in this scenario. Once I let my body do its thing, it went back to normal and I felt well again within minutes, though I do feel a lot of air moving around in my stomach. I went back to bed and contentedly just dozed for another 4 hours or so, letting my head go over old books and clips I've seen. I don't know if my memory has been affected or not, but the audio-visual part still seems spot-on for now. I read a bit, played some vidya, noticed my left hand felt funny and was swollen. Removing the IV bandage solved the problem, then I dozed off again.

July 1: I'm starting to get what they mean when they say the DEX makes you "more alert". My head is a hell of a lot clearer without it, but my body definitely has a lot less energy. Everything seems to take a lot more physical effort, including just focusing visually on things, but that also may have more to do with the fact that I was in bed for 24 hours (giving my head and neck a lymphatic massage seems to fix most of the issue). This isn't helped by the 10% increase in Vinblastine we went with that wreaks havoc on your peripheral nerves. I know that VIN and DEX have an interaction that makes the former less effective and I bore the risks in mind when I omitted the latter from my regimen, so I essentially made the former more effective. Of course, this means effective in GENERAL, not just against cancerous cells. I was still dealing with some remaining DEX swell when I went in for the latest infusion, so the general swell you get from getting this bullshit pumped through you was stacked on top of what was already there. My face, neck, arms and legs are puffy, but nowhere near what they are normally when I'm on the corticosteroid. I have to burp a lot but it doesn't want to come out without a struggle; never thought I'd have to list "difficulty burping" as an experienced side effect for anything. Walked around a bit.

I wanna say "fuck DEX" with 100% conviction, but that minor malaise occasionally comes back, localized around my throat when I feel something down under. If that doesn't go away by tomorrow, I may actually have to take one to avoid a possible manifestation of ACTUAL nausea. I also have that metoclopromide that I haven't even touched yet. My legs feel really heavy (thanks VIN) and my left ankle really hurts, particularly around the Achilles tendon. Walking on the balls of my feet made the pain go away, but I don't know whether it's good to do so or not. My vision kept pulsating and my head felt both heavy and light most of the day, but after a rest, I walked around a bit, used the cycle. Emptied my normal water bottle, so I chugged some h2 water from the full one; I just wanted a drink, but I felt a lot better after drinking it. Kinda forgot about the effects since you end up distracted by other stuff, but I really can't recommend this shit enough. My heels hurt on both feet, more pronounced on the left. It's not as sharp as before.

July 2: Lost a lot of hair at once, like always right after a treatment. Took a shower, went to bed. Slow getting up, but enough energy to stretch and go for a walk, unlike the first day. I'm always impressed with my body's healing factor. I'd cut my thumb open on Saturday and it seemed like it was going to stay as a nasty gash for some time since it just kinda stayed there, but I guess something kicked in and half of it is gone overnight. Same with the two mosquito bites; they were open wounds last night (I think I scratched them in my sleep) but they're just closed-off patches of pinkish skin now, like they were never open to start with. My immune system is much the same way, so naturally the problem I got was the one that hijacks your immune cells. I think anything else would have gotten nuked pretty quick, like usual.

I broke my fast late, partly out of caution, but mostly because I kept dozing off around midday. Since the DEX-free infusion cleared my digestive tract, I didn't have the usual bathroom runs when I drank my broth. Added in some peppermint and ginger tea to the mix, but it seems it wasn't necessary. No nausea at all. Neck and ankles are tense and hurt like a bitch, mostly the latter, so I'll probably be fucking around with some anti-inflammatory measures. In the meantime, time for solids. Seafood, as usual. Some burping, no other side effects so far.


June 3: Slow getting up still. I can't tell how much is from the absence of the steroid and how much is just the cumulative fatigue effects, or just from the sledgehammer of Vinblastine. Had that thing where I woke up after 4 hours to go to the bathroom, then went back to bed. Got up, had some food and coconut base. Been trying to take notice of the state of my eyes, just in case. My right has that dried stuff on it when I wake up, but my left eye is dry. Very tired physically, also I have bouts of head spinning, sorta. I think it's because my neck is so tense and fucked up; loosening it a bit helped a lot.Worth mentioning that I took the L-Glutamine and Acetyl-L-Carnitine before I went to bed. My legs were really painful, and today they're not at all. Just some occasional ache around the ankle(s). It's like it vanished overnight like magic.

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