July 24 Updates

tl;dr: Had stomach flu. There's fluid swelling around my eyes, most notably in the left. There's an integrated cancer clinic but they're really expensive and I dunno how well it'll work. Took Akynzeo and 1 DEX as an experiment to see if it helps with the eye swell, all it did was make my mouth dry and my soles swell. Took too long trying to figure out why so many parts of me were "NOPE"ing at the prospect of doing treatment at this particular time that the Dacarbazine expired and I couldn't do it that day anyway. Got some updates medical papers, scroll down for the linked examples if you're curious about PET scans and how DS scores work. Next day I tried again and after around 8 stabs and no luck finding a safe usable vein, they called off the treatment for safety reasons. I'm probably not going to go back. If things go south, leave your name/address along with things you like if you want to be on my will, just in case. Tired, swollen, arms really hurt.



July 18: Definitely had some kind of stomach flu, digestion still draining itself and burping sulfur. My fast started today, but I had to take some throat lozenges because the back of my throat was sore and wouldn't quit; there's no "real" sugar in these things, so hopefully it won't fuck up my fast. Took a Claritin to stop sneezing.

July 19: Feeling a bit better but more tired. Want to eat but don't at the same time. Digestive system still sorta moving, which is a bit concerning since it's supposed to be going to sleep but I'm thinking it's just the flu. I don't have a fever, hopefully that flu won't fuck anything up. Noticed I'm having trouble remembering words I wanted to use more often. Someone shoot me. Hair loss hasn't slowed like it usually does, despite having an extra week to recover. Thought it was but then I lost another 2 handfuls, one before my shower and one during. There's notable edema under my left eye I can't seem to get rid of, though both of my eyes have it around them. Lifted a bit and went to bed.

July 20: More bullshit tomorrow. Forgot to pick up the Akynzeo so I had to do it tonight. I really, really, really, really, really, really, really, really, really, really don't want to go. Something in me is saying "don't do it right now" but I dunno why. Chemo is terrible and I want to stop anyway at all times, not sure what the warning is about. Dying ends in death, that much I knew. Since I already know how that path ends, I wanted to experiment and see what I could learn. I've experimented, I've learned. Curiosity sated, now stop fucking torturing me. Really tempted to just stop or off myself. Doc keeps asking if I want to continue, and I always want to answer "no". I think he's tired of dealing with me, and I don't blame him since I'm tired of it, too. Eye edema is still there, looks terrible. Finally found the integrated clinic roomie's contact had mentioned working for someone she knew, I'll have to call them tomorrow.

July 21: Still don't want to go. Called that clinic, they want hundreds of dollars for anything they do, and I severely doubt it's covered by my health shit. It's poison myself or die. Everything in me is warning me not to do it today, I have no idea why. It's a similar feeling as the time they prescribed a full dose of DEX before my first treatment and I got an internal "nope". Leaving aside the usual stress bullshit, I was very concerned and couldn't pin down why my body was saying "don't do this shit right now", and I spent a lot of time sitting in the chemo chair just trying to figure out where the concern was directed. Seemed to be mostly head, neck and legs? Nothing specific that I can pin down at the moment. I did spot some petechiae on my lower legs, but apparently that's normal when your platelets are low; my specialty is neurology, not hematology you see. In any case, I'd taken the Akynzeo and a single DEX just to see if it helps with the orbital edema.

I kept getting my train of thought interrupted by a conga line of well-meaning people, some more welcome than others. For the few human ones (including today's new nurse, who had also gone through chemo, most of the good ones have) I didn't much care if they were there one way or the other, noise that was neither invited nor unwelcome. She asked if I wanted to see the onc and I said no. The charge nurse, however, was called and after 2 sentences I could tell it was a bad fit. Getting personally defensive when a patient is in turmoil is one of the #1 Don'ts in psych help of any sort. I had to tear my head away from the problem I was having to babysit her feelings with words and find an eloquent wording that would dismiss her to her other duties while implying that she wasn't needed further at this chair. She seemed to take it as "go get the onc", the last fucker I wanted to see. He acts a little more bouncy when the nurses are around, which I found interesting; now I'm not sure if he feeds off the other person's energy like I do or not. He took the dismissal with simple grace and went off to his likely very busy office, which is one of the reasons I didn't want him away from his workplace.

The nurses that talked with me were nice enough to answer some questions I had regarding both the edema AND the lump in my arm veins that the onc and his worker didn't comment on; looking at it, she thinks it's just scar tissue and shouldn't interfere with anything or cause clotting, and that they do eventually lessen but it takes time. This nurse took my traditional "can you give me a bullet to the brain stem" half-serious gallows humor worryingly, unlike the other nurses that just took it for what it was before. As a result, I got to talk with a psych just as I was coming to a decision about investigating shit and maybe seeing how it goes. More noise, but it was honest, genuine noise so it didn't bother me as much as I tried to pinpoint just what the fuck the problem was in me this time around. We shot the shit, I answered some questions and she returned the favor. I got to hear an anecdote about her granddaughter making her a birthday card that had an original pun in it that would make the stream proud. (It was great/awful, as puns should be.) She stayed until she had to go to another patient, though I'd encouraged her to leave to help the other people sooner.

The first came back and said that the Dacarbazine had expired so we couldn't do the chemo today. They prepare it far in advance, apparently, and the Dac is only good for 8 hours, compared to the others' 20-30 hours. I actually felt pretty good knowing that I wouldn't have it in me, and that I'd inadvertently caused some of it to "die" in a small rush of accidental petty vengeance. I know it causes them inconvenience and I don't want to do that, but the small rush of victory I felt was still nice to feel. The nurse scheduled me in for tomorrow at the same time-ish, though they will only mix the meds if I come in and say I'm ready. It'll take about an hour to do so, so it'll all be fresh which worries me a bit. This also throws off my eating schedule a bit by adding a fast day and shortening the refeed time, as well as the meds; I'd already taken the Akynzeo today and it lasts around 2-5 days total (in my personal experience it's around 3-4). Not taking any more DEX, so far all it's given me is swollen foot soles. On the whole, at least I get to rest a bit and maybe actually squeeze in a cardio workout like I've wanted to for the past 24 hours but keep getting sidetracked with new lines of research. Other than that, it was just a few medical staff singing praises about my textbook knowledge and now different it was from the usual patients they get, who are apparently "normally [...] clueless about everything" [sic]. Fat lot of good it's done me. Also someone mistaking knowledge for intelligence, but that happens fairly often.

I requested the latest updates on my medical profile, as well as pics of the PET scan if they had it. The papers were no problem, but apparently I needed the images from Nuclear Medicine, and unfortunately the only person "behind the desk" was a good-humored, but openly confused technician who didn't know much about these forms or how to acquire the media I was after. After some desktop chicanery, I said not to worry about it. That said, now that I have the papers in front of me, I can now put what they say properly here:

July 13th PET Scan = Big neck tumor is partly necrotic (just scar tissue) and has shrunk from 3.3cm x 2.8cm down to 2.0cm x 1.4cm, with SUV 3.5. The one in my chest went from 7.5cm x 5.5cm down to 6.0cm x 3.2cm, SUV is 3.6. If you don't know what the last number means, it's just "activity"; the liver is usually around SUV 2-3ish, and if a mass has SUV 2.5 or more it needs to be investigated for malignancy since it's higher than the average liver baseline activity. The activity in my tumors is slightly higher than my liver, but not by a lot. There was also some background uptake in some other places (like my esophagus), but they're generally not considered to be cancerous activity and are generally associated with biological functions or physiological stuff. The tumor fuckery means my Deauville category is still 4, sadly, and it's the main thing that contributed to my "unfavorable" prognosis. If they can just calm the fuck down as bit then I can come out PET negative and stop this shit properly. If you're curious, the bottom set is what it looks like when the cancer gets culled and most of the activity defaults to the kidneys and (later) liver instead of malignant stuff (the big black spots are the brain and bladder, ignore those). The poor fucker in the top set is DS5 all the way through. If I can get my hands on my PET scan I can probably explain the difference better, but mine would be much more faint compared to any of the ones with noticeable masses since I'm not a "proper" DS4, but they don't do decimals in the official list of shit at the end.

I just don't want to be stabbed anymore. It's not the same as a blade or an ass-kicking and I could deal with it just fine if it were, but it's this thick-ass needle long catheter sitting in your vein for 3+ hours. It's this horrible, unnatural thing inside you in a place you don't want it to be, putting terrible toxic shit into your body and often causing a ton of pain itself. Anyway, I'm absolutely exhausted since I've stayed up nearly 24 hours at this point, but the DEX has some time before it wears off. May as well work on some things and see if I have enough leftover energy to get my heart moving. I'll look into scanning the papers I have and emailing them to that clinic to have the doc look over them and see if coming in for a consultation is worth it.


July 22: Woke up feeling somewhat rested for once, with enough energy to get out of bed relatively quickly. I can't tell if the single DEX helped with the edema or not. I'd also applied palmitate oil (vitamin A) to the area and it's gone down a little. The feeling from yesterday is still present but nowhere near as strong. Before it was a clear "don't do this, bad idea", today it's more of a "you can try if you want, but really watch closely". It didn't go away the hour I had to wait for them to order the drugs, I jogged a bit around the building hoping to see if it was something relating to that, but it wasn't. Figured the extra day may be beneficial anyway since I wasn't sure if the lozenges would fuck up my fast or not.

They got the nurse from #4 to do it this time since it went so smoothly the last go. The feeling didn't abate, though. She gave it her best shot, but I ended up having 3-4 different nurses give this a try and no luck. I got stabbed 6 times in my left arm and twice in my right. Out of those, 3 were okay but they either lost the vein, it didn't flush, or the line blew; 2 were extremely painful and this is the first time I'd ever begged someone to take the line out. Naturally the nurse that did that one didn't listen and kept on trying to get the vein because they only care about that, like I'm overreacting or something. It hurt terrible the whole time it was in and even the saline flush stung when it wasn't supposed to. Similar thing happened on the right. They even tried the inside against my best judgement, but the burn from the saline alone was so bad that we couldn't do it. For safety reasons, they canceled the treatment. You can't put caustic chemicals into someone with that many holes in their veins.

They keep trying to talk me into getting a PICC line or a port, but I know I'd just end up pulling it out or cutting it out at home. People like to praise me for my supposed level-headedness, logic, unflappability for some reason I never really got. I generally just think of myself as some dumbass faggot and don't understand the hype. Maybe it just seems that way to people for some reason, but I've always been quite primal. If something isn't right, it gets picked up on and unnaturalness in my body gets the extreme treatment even if it seems illogical, reduced to some slathering wild beast when cornered. Maybe that's why so many people compare me to things that are "predatory", even when I feel like I'm just a bottom feeder. I felt around the time of the last PET scan that my body was pretty much done with all this, and I suppose that's what the feeling was. I'll look into the alternative routes and see what comes of it. In case it doesn't leave, send me your name/address if you want to be on my will. I have vidya and stuff, some books if you want, mostly classic lit and science.

I did manage to get both of my PET scans and looked at them in detail. Gotta say, my frontal lobe is breddy nice. The first scan shows my neck and chest lit up like a Christmas tree with very little uptake by the organs since the cancer was stealing it all. Even the bones lit up a bit more. In the latest one, you can barely see anything in the neck, and the one in the chest blends into the background organs, can't even tell where it is without comparing the two. Looks a lot like the second pic in the remission series I linked, better than I'd thought. Here's hoping I can kick the last of it without more torture sessions. Broke my fast, may as well. Ended up having to go to bed early due to fatigue.


July 23: Woke up tired, arms still really hurt where the IV placement was bad. The one on my right where they didn't listen in particular is pretty bad, and I can't have anything heavier than my shirt sleeve touch it directly. Ate and managed to stay awake about 6 hours before needing to go to bed again. Slept and woke up only to chug some water and sleep again.


July 24: Arms still hurt a lot. Everything does, actually. Either it's fluid swell since I haven't worked out for a couple days, or the nerve damage is more extensive than I could feel. Probably some combo. I'm all swollen, from my eyes down, though interestingly my legs seem to have been spared somewhat this time. Actually felt hungry for the first time in ages, forgot what that was like. The single DEX that I took for the experiment on Tuesday still seems to be enough to grind digestion to a halt for a few days, so going with some fibrous cereal mixed with flax powder and protein. I'll have to rely on cardio to drain all this bullshit and try to see if I can get my energy levels up in order to actually do it. Tired of looking like I got my face stung by bees while all of my hair falls out. Those sulfur burps are coming back, too, so whatever was causing it survived the fast.