June 19 Updates

tl;dr: I have a small stretch mark on my right calf from the swelling before I got it down. Got a cheap manual treadmill for walking so I don't get my skull destroyed on a walk by the crazy hail we got. Not likely to be lymphedema, my own normal socks are better than the compression ones they sell at the store anyway. Lactic acid is GREAT for bringing down retention swell. Got Sandalore, got health coverage. Found a bakery, learned everyone I live with is a shameless pig that will happily eat their weight in carbs if I'm not around to call them out. IV site for chemo was very painful and had to be re-sited for the last drip because it burned. Ended up staying 2 hours later than usual. Several nurses asked me if it's my first treatment still I still have a full head of hair, just thinner. The swelling is shitty but manageable, sorta. Treadmill was a good idea. About 4 DEX seems to be my limit before it starts affecting my vision; I was originally prescribed 7 of them. Broke my fast. Very tired. New fridge keeps fucking up, trying to avoid another possible bout of food poisoning that could come from it if I'm not careful. If I'm not in the stream, either I fell asleep again or something happened and I needed to go to ER or something.


June 13: Acquired cheap treadmill; a nice woman (who turned out to be a nurse) had gotten it for walking during quarantine, but ended up not using it. It's a manual and seems great for walking, but anything faster than a brisk jog is tricky on the small thing. Given the deadly hailstorm we got, it's a good alternative if I can't go outside, but it's definitely not a full replacement.

Elevation and massage don't seem to be doing anything for the leg. I'm thinking it's not lymphedema going by this and where my tumors were, but you never know. Tried wrapping it with bandages and a knee brace but it doesn't seem to help, and the bandage makes shit worse. I have foregone the bandage and just stuck with the elastic thing I was using before on my calf as it has the best results. The downside is that it's too short so there's a bulge under it, and I now have a ring where the elastic terminates. The compression socks I got at the drug store are more loose than my regular socks, so fat lot of good they do.

June 14: The retinol + lactic acid combo definitely works. Nothing else has had such a drastic effect in lowering the swelling. I've switched some tall calf socks I had sitting around, and they're nice and tight with the bonus of having thicker padding on the bottom. My left leg is still more swollen than the right, but at least it looks more even now. I can't seem to do much about the swell near the ankle. I've been focusing so much on how much bigger the left is than the right, but I can see both of my legs are swollen all the way up, it's just more intense below the knees. I did my lifts, but reduced the number of sets since I'm both fasting and dealing with edema. Looking into tui na if something fucks up badly in me, a few places nearby offer it. Noticed the provider for my emergency phone has been double-charging me every month, so I'll have to deal with that tomorrow.

June 15: Stayed up all night until my appointment time so I'd make it and be somewhat-lucid. Felt like shit. As we pull up to the cancer place, I feel an instinctual and reflexive wave of loathing wash over me every time. They stole more blood from me, I can't stand IVs at all now. At least it wasn't as painful as the emerg one, just the entry stung. Met Honda nurse again, she seems pretty okay. The onc's nurse was nice enough to give me a printout of my blood tests for me to take home. Sodium was just fine despite not taking any in, so I'll avoid it for a while so as not to contribute to the edema.

My NP counts were lower than I'd hoped/been aiming for at 2.5, but it's enough where another torture session is permitted. My previous count was 10+, for comparison. You want to be at least 1 and above, otherwise your defenses may be considered too compromised to continue and you have to wait. Onc and his nurse pretty much confirmed that the likelihood of the swell being lymphedema is very low, and that it's likely just fluid retention from the DEX. I fucking hate that fucking steroid. Apparently, if you're getting a normal dose of chemo poisons, the DEX's contribution to lymphocyte death isn't huge, so you can reduce it just fine. I was getting a half dose of Vinblastine, so the DEX took up some of the slack. I did notice that the tumors didn't shrink as much this time, but they're barely there to begin with and the bulk of what I feel is this semi-yielding dead mass that just feels like scar tissue around the formerly-huge one. We decided to up my Vin from 50% to 75% and just watch it. I'm really sensitive to Vin and DEX, if my previous infusion of liquid hate was any indication.

I asked about my topical experiments, and the onc said if it works for me then great, he can't argue with the results. Not much of a discussion. Once again, I found that the nurses are FAR more interested in the shit I'm doing. The guy I talked to thought it was pretty cool, and said that if it's edema then the lactic acid is probably the one doing most of the heavy lifting. Makes sense, and looking at the drainage amount vs how much lactic I'd used, it lines up as well. I looked around a few places for a top up of lactic acid for further testing, but I can't seem to find it anywhere anymore. Forgot to tell onc that my confusion in the shower after the first treatment was my forgetting to turn the water temperature down, and the resulting vertigo combining badly with the chemo side effects.

Acquired the Akynzeo pill for tomorrow. Picked up some food, a new bamboo steamer, and some shampoo the worker rec'd at the supplement/health store I went to before. Had another incident with the cashier at the market where she didn't know what the fuck I was; the mask covers some of my more racially-incongruous features and no one in the market even gives me a second look when I have it on. Cashier struck up a convo and was surprised I was born here. "You look just like us". Well yeah, it's leafland, you can be anything. Guess I can add "Chinese" to my list of Shit People Think I May Be, a bit more specific than the trademark "some kind of Asian" I'd get at my other job. The lack of an epicanthic fold throws them off a lot in these cases, I've noticed. Tried to call my phone provider but the customer service line just automatically hangs up on you now, so I guess I'll have to deal with them via website chat to get this sorted out.

The Sandalore arrived in the mail along with my newly-approved health card. The oil smells pretty strong, so it's not difficult to keep the scent around for the hair receptors to grab. I kept hearing "you smell like sandalwood" all evening. We found a local bakery to replace the one we had to move away from. Apparently the cinnamon rolls don't compare but their bread is amazing. I'm on a fast, so this is all hearsay from a certain person who ate an entire half of a sourdough loaf in one go, and a certain person who went against their junk limitation declaration, enjoying all those desserts in excess. Went for a walk and gathered some plants for the mice to play with (desk mouse demolished her chamomile flower immediately), did my stretches, taught bread-roomie how to use a steamer. Put on some hair oil so it all soaks in and the stronger scents dissipate since I don't want to make other patients ill. When everyone goes to bed I'm left only with the encroaching dread of having to go in and get more toxic shit pumped into me again. It's a weird thing, not being particularly social but needing someone around in order to avoid the deep-think brood that overtakes you. I don't like the cancer tumors, but I hate the chemo way more. It feels wrong in an artificial way, different from the wrongness of the disease. This horrible aversion that comes from somewhere deep and primal. I never want to go in, but here we are.

June 16: Applied some biotin serum to scalp, did some cardio with lots of kicks to loosen my legs up. Within 10 minutes of taking the DEX, my limbs start to feel heavy. By 20, they hurt a bit and my mouth is dry, start to feel really fatigued. My neck starts to hurt, breathing makes me feel a tightness across my throat. If what the DEX adds to the cure rate is "not much" with an increased dose of Vinblastine, I question why I have to take this garbage at all. I went from 7 pills to 3, and the only thing I noticed is that I can actually walk because the swell isn't as bad, I hurt less, I can sleep when I'm tired, and I don't have shortness of breath as much. All it does it harm. I just started walking with most of the limp gone and now I have to do this all over again.

Saw a license plate on the way there that said just IFW, but it looked like TFW. I felt it. There was another one that matched the name of the guy's repair business decal on the side, but the logo was in Comic Sans so it looked ridiculous. The screening person recognized me from yesterday. Got a nurse that was okay but that I didn't mesh with. You know, normalfags. She made joks that weren't particularly funny but made decent launchpads if I got the chance. I think because I'm deadpan and don't do the polite laugh thing put her off, doesn't help I'm stressed to hell and back. She mentioned that by now, usually people lose all their hair and it was unusual that I still had a full head of it. Experiment is bearing fruit.

We tried the left arm, but even when I got my last treatment on my right, the left ended up hurting. Maybe it's the edema? We tried poking it but it hurt a ton so we switched arms. Turns out pretty much every poke she made hurt like a damn, and the few times it didn't, she started twisting the needle around like she was digging or gold and that usually did it. We got one that continued to hurt a lot even after the needle was in, not a good sign which I tried to say, but the blood return was good. I got her to pull it out a little since having it in all the way made the needle end hurt a lot, pulling it back a bit stopped that particular poke. We did the A push, and we had to make it VERY slow and diluted compared to the last time because the area was so sensitive. Then the Vinblastine was a drip this time instead of a push, and that hurt as well. By now my arm feels really swollen around the injection site even if it doesn't look it, and there's discoloration I don't like from premature bruising.

It took 2 hours to get through them, and then came the Dacarbazine. This shit is caustic enough to eat through the floor in its pure form. When we started the IV, I felt the burn inside and I've never felt that before. It started as a band around where the needle entered, and it would go up to my elbow on the inside, like a chemical is burning you. Means it was damaging the vein, probably. We tried a few times with extra dilution, but no-go. The burn was always there, just less immediately intense. So they had to move the injection site. I'd already been poked a million times, so this was tricky. The normalfag nurse tried a few more times, but she seems to have a knack for always hitting exactly the wrong spots and it hurt every time. The last one was okay, but then she started twisting around again and it got pushed in too far on the last twist, which made my arm reflexively jerk back. She pulled it out with this and said she was done trying and that she doesn't like torturing people.

A nurse on the floor that sometimes works pediatrics gave it a try on the outside of the arm where I'd said to try the first time. She found a vein without much pain, but it "blew" which is what they say when they can't seem to get it to stay there and get uptake from it, basically. It was a good effort. Next came the nurse that they called the shark, since she was a shark at finding veins. She found one on the outside that hasn't been poked and risked leakage, and while the initial entry hurt through the thicker skin (expected), it didn't afterward. A nurse that works with my onc came down. He spoke all soft and agreeable, and pretty much lowkey encouraged me to die by saying I can quit at any time. I dunno what the doc's angle is, but the unintentional dark humor was enough where I didn't call him out. I just hope he doesn't try that with anyone else who hasn't had their humor twisted by decades of awful shit since, judging by all the "hang in there" crap on the walls it probably wouldn't go well. When the D drip started, and it hurt initially around the forearm and elbow from all the swelling by IV site #1whenever the Dac cycled through between cold saline flushes, but that eventually faded as my poor arm got a break from the shitty IV placement. I just apparently have a lot of nerves and valves, and my inner arms are really sensitive. I know for a fact you can do whatever you want to the outsides when they're not swollen up, the skin is just tougher.

Due to the extra time, I had to be moved to another floor that was open later to finish this bullshit. Apologized to normalfag nurse for pseudo-traumatizing her with all the shitty horrendous pain before I left. Looks like Shark works that floor, since she was behind the desk the whole time. Turns out I left my emergency phone in the bed downstairs as I"m not used to having one, and it had gotten sent to laundry. Normalfag nurse managed to dig it out and said I owe her my first-born. I said she's gonna be waiting a long time, but I could do something else (semi-joke). She said it was fine, but that's just a challenge. Given how she's a paranoid neat freak, I'll probably avoid snacks and go for something made of paper where COVID couldn't live long. I paced and walked the whole time, useful when I had to go to the bathroom and makes my leg hurt less. They had me on double saline bags, so this was the first time I tasted it. Kind of like that slightly stale taste you get when you wake up in the night dehydrated with a dry mouth, the kind that makes water taste fresh and sweet.

My leg had started to feel like it was packed with cotton partway through, and everything was swollen by the end including my fingers and face. Looked in the mirror and I look like hell. Back of my left knee hurt a lot. As usual, I was very tired near the end, and that's how I know I don't have much left. Paced and walked a lot, but leg kept on swelling. In total, I stayed about 2 hours later than usual due to all the sensitivity shit that probably could have been avoided if we'd just used a vein on the outside like I wanted initially. Funny how much smoother shit goes when people actually listen. Went home, on the drive my calf started doing the cramping mambo again. Pains around the abdomen in the cradle of the pelvis. Mouth still dry despite being pumped with several liters of liquid. Water tastes sweet again. It didn't at first, but it slowly started to from the left side of my tongue. Less fatigue this time, but more heart palpitations during the drip, which can be chased away with some breathing tricks and small coughs. Now I just need to piss a lot and find more lactic acid.

The treadmill was a good idea. The cycle is great if you just need to make your legs move and get your heart up, but it doesn't beat using your muscles to stand and move. Shame the belt slides over to the left every 5 minutes and needs to be adjusted with my right foot. Not sure how much the gait abnormality is affecting it. Tuned it with an allen key and it seems to have fixed it. Put some more hair oil on, walked on the treadmill for a while. Made a ghetto bandage binding for my face/around my jaw to see if it helps, even if it looks retarded. Arm was good but the first IV site has started to hurt on and off. The first site is still sore and bruised with visible irritation next to it, and site #2 had a bruise but it's already healed. My healing factor only seems to apply to anywhere by the underarms, the scale missing from my under-armor. Not hungry per se, but I am craving certain foods, the kind of "that would be nice" urge you can easily ignore. Noticed I'm on twice on June 30th for systemic, so I'll have to call and get that straightened out.

Gonna try walking on the treadmill for 20-30 minutes every hour to give my legs a chance to also rest between activity. The last round left me so exhausted that I couldn't lift myself off the couch all day, and it took a lot of prep to finally stand up and make myself go to bed, so that likely contributed to the swell getting as bad as it did. After trying the plan a couple times, some fatigue started to settle, and while I knew I could probably still do 20 minutes, I'd be pretty tired as a result, so I stuck to around 10 instead, with some topical lactic acid application. Hours later, my left ankle hurt most but the swelling is definitely down, and I can remove that ring I was wearing finally. Legs still get stiff and heavy if I sit too long and let shit gather, though. Face also went down, though the skin on either side of my nose is red, making me look like I have Oblivion-style nasolabial lines. Guess that's why the nurses guessed my age as a bit older than usual, and it remains a reliable way to track how I'm doing health-wise and also get mildly annoyed when everyone keeps saying the cancer such a shame since I'm "so young". It's useful for fucking with people, though.

Haven't lost much hair today unlike the previous round, at least so far. A couple eyebrows and eyelashes. It's interesting how it affects different parts of my body. Scalp is the most obvious, and I definitely shed more than usual. The worst of it is always when I bathe, so cleaning the scalp gently is necessary. I lose some eyebrows, but the other ones just grow back as the others leave, making this bizarre but somewhat-coherent replacement within the pattern of the arch. Eyelashes come out in small amounts of 1-5 and it's not enough to really notice visually, but the ones that haven't fallen out (most of them) are longer than they were before. Half of down under is simply missing with no further explanation. The steroids made more hairs appear on my legs, but the chemo prevented them from growing much. I shaved the hairs as an experiment and it takes like 2 weeks to see them return even a bit. Arms are similar with no noticeable extra growth and grow back a bit quicker, same with under the arm. Can't comment on facial hair since, like roomie prime, I just don't deal with that shit. He shaves all of his off. There's no beard or mustache in the house, only mouse whiskers on the smallest members.


June 17: Woke up very early and couldn't sleep again. Brushed teeth and laid back down anyway, until I could get a few more hours of sleep. The swell came back, and some of the bloat. The one in your face gathers around the jaw and pulls your face's skin down, makes you look crappy every time, like you want to order tapioca off the seniors' menu. Had some pain and tingling in my right heel a couple times last night, a longer bout when I'd laid down. I don't have it now, but my left knee hurts again. Took some baking soda water and read a book for an hour to let it settle before taking the DEX. Went with 2 just to see if I actually do have a handle on keeping the side effects under control. Half hour later and I'm getting some gas and more bloat already. Washed face, applied oil. Time to call systemic, my phone provider, and make use of that treadmill.

The mixup with systemic was pretty easy, they just forgot to take the initial booking off the schedule before they printed it. As usual, the phone support provider was an absolute pain in the ass to get ahold of, but they sorted shit out. Turns out my bank turned on two-step verification for the entire site and it was using my old phone number that hasn't been active in like 3+ years, so that was another call. Their menus were very long, but the dude who picked up got shit solved pretty quick. No more calls, thank fuck. Neighbor had an extra cupboard laying around, so I also have a pantry now.

As of right now, the big tumor in my neck feels like it's gone, there's just this flat mass of dead tissue sitting there. The smaller ones above it are still about the size of a pea and very slightly raise the skin. They've been like that for a while, and don't seem to want to budge. I can't tell if they're just permanently enlarged, or packed with dead tissue, or not responding. They always feel bigger right after a cycle of chemo due to the swelling and extra fluid being drained, so I dunno. I'm pretty sure none of the topical stuff I'm using interacts with this regimen, I tried to be careful about that.

Both knees hurt, and my calves are starting to look like grapefruits. Starting on the bike for 100 cycles loosens them enough where I can use the treadmill. Neck feels like it's an inflatable collar, can feel the chest tightness again. It's all fluid swell. Thankfully my lungs seem unaffected. Had to walk around the block a few times until I could use the perma-inclined treadmill for more than 10 minutes. The neutropenia is hitting he pretty good, and I feel out of breath a lot when I walk or talk. Bottom of my left foot swelled up enough where the modest arch of my running shoes were digging into it pretty bad. Hilarious, while the left is still worse pain-wise and is more stubborn, since it was bound this whole time the right calf is actually the bigger one now. Fucking hate DEX, can't believe it of all things is being touted as a possible gate to a COVID cure. Better hope those doses are lower than the 4-8g I take, one of the side effects can be shortness of breath after all. Enjoy your fucking swelling. Least I think it's doing something; feeling lots of unpleasant twinges around the neck and chest area where the tumors are.

Water still has that vague, unpleasant sweet taste. I crave sour shit a lot for some reason despite its taste being mellowed a lot by all this, no idea why. I've been addicted to mustard throughout this.Guess I'll have to add some to something when I break the fast. Had a bath, was worried that all the hair I didn't lose on treatment day would happen in the tub but it was about the same as every other bath. The epsom salts really do help with the edema.


June 18: DEX kept me up since it doesn't let you sleep. Desk mouse didn't want to go back in her cage, so we stayed up together. Broke my fast when the sun was up, which was fairly early in the day. Coconut water and that vegetable broth I made. Intestines woke up. Had some bone broth afterward. Everything has woken up and refuses to sleep. Had fish, all of this took about 2 hours with the pauses. Waiting for another hour to pass for an actual small meal, I fell asleep at my desk and 2 ended up going by. Woke up to a very swollen foot/ankle on the left, close to same on the right, and my right eye not focusing properly. No more DEX, I think. It doesn't hurt, but it's making reading things further away a chore. I'll wait and see if it goes down on its own with the rest of the edema. Had some food and water, used the cycle a bit before sleeping to try to pump some shit out of my legs.

Woke up a couple times, but managed a collective 8 hours. Swelling in calves is down, ankle on left has gone down, ankle on right went up. Swapped bindings. Blurring in right eye still present but much less pronounced. Trying to fix malfunctioning fridge, think it may actually be the thermostat for the lower part. I THINK I have it working again, but we'll see. Cleaned self up, applied hair oil, had some more coconut oil and bone broth. I can feel where there's extra fluid settled in me like usual, and it's a disgusting feeling. Did some stretches to try to work it out.

Had a semi-normal meal; never start with red meats, fibrous vegetables, stuff that causes gas, grains like wheat, or dairy if you can. Stick with stuff that's easy to digest, high in vitamins and proteins, fats are fine. I go broth --> broth --> fatty fish/shellfish --> simple carb + seaweed + fish --> broth --> simple carb + fermented vegetable/protein + poultry --> grapes/berries. So far, anyway. I should be able to graduate to less limited fare when I wake up next. Eye blur is ALMOST gone. Had a session of scalp itch that I immediately applied oil to. Lost some hairs, but looks like I caught it early. Was gonna lift some things and try to get some sleep, really fucking tired. Ended up passing out at desk. Will lift during stream, I guess.


June 19: Feeling really tired today. Woke up to a puffy face and lots of dry skin around my nose for some reason. Swell in my legs is down, but not the ankles. Right seems worse in that regard. Rather than a fat deposit around the middle, it's more like a thin band of fluid. It's like having a thin belt with liquid in it laying across your midsection, like a partially-filled rubber glove but smaller. Most of the hair under the belt is just kind of not there; I haven't found any in my bed or clothes, so where the fuck it's going is anyone's guess. It wasn't in the bath water, either. Head hair is holding out, though. Eyebrows always thin slightly each treatment then start growing back immediately. Neck's sore around the base, feels swollen but can't tell if it is by sight. Avoiding taking Naproxen due to the edema and it being known to also cause vision problems, sometimes, so I'd rather not combine them for now. Had some eggs and toast and stuff. IV arm really hurts around the first site.

Taking it slow with activity wind-up, making use of the cycle and treadmill to slowly get myself up to a form where I can do some stretches and then maybe move shit. It's been hours since I got out of bed, but it still feels like I just woke up. Seems like each treatment is fairly different, but every single one kicks the shit out of you.