#A lot of my pain lessened upon taking half an aspirin.

[blackwaxidol]

Woke up briefly. I like that you can always tell which star is Procyon because it's always doing some strobelight bullshit.

[braindamageforbeginners]

Week 1, Day 1, Treatment 1

I’m back home, after a day at the hospital. If things continue at the current rate, well, I’ll probably be dead in the near-future (median life-expectancy of GBM patients is 14 months), but at least I’ll make a dent in the reading list.

I began my day with a potentially dangerous, experimental drug. I’m going to focus on the positive and think that this is a step closer to being Hunter S. Thompson, and try to forget the fact that the nurse had to put on protective laboratory gear before handling something that she then injected into my veins. Also, because I’d been warned about keeping super-hydrated throughout this process (and because I have hard-to-find veins), I’d been chugging Gatorade since I rolled out of bed, so hooking me up to an IV  to hydrate me was just gilding the lily. Or over-filling the water balloon, to be more accurate. Anyway, apart from spending a disturbing amount of time, uh, let’s say, “discarding” all that excess fluid, there aren’t too many side-effects worth reporting (we’ll get to that shortly). Admittedly, spending about ten minutes peeing after 18 hours being pumped full of an unknown substance is disturbing, but if that’s the worst I suffer today, I’ll count it as a victory. However, the day is not over, and I have not taken my bed-time chemo drugs, and, as Herodotus wrote, “Judge no man fortunate until he is dead.”

However, as far as side-effects, I’m not too worried about vomiting any more. The nameless anti-nausea drug is amazingly effective; like, I could easily see myself becoming addicted to this stuff. Not because there’s any sort of fun, psychedelic effect, but because I hate puking, and this medication is so effective that I think I could wolf down a rotting raccoon carcass without any side effects (other than contracting rabies, I mean). Obviously, I’ll be putting that to the test over the coming weeks, but life would seem to have improved significantly in that regard (and, I’ve been told the chemo side-effects should be further lessened if I continue my extreme hydration-regimen).

I am, however, experiencing some side-effects; I feel bad, but not horrible. Specifically, my muscles feel sore and cramp-y, which, while unpleasant, isn’t the worst I was fearing. And, according my mad scientist oncologist (specifically, my Southern California Mad Scientist Oncologist), side-effects are indicative that the miracle drug is working well. And, based on how my muscles feel, it’s working. The major complaint, apart from lethargy, is, I shit you not, hallucinations. So, I plan to spend tomorrow lying on the couch, being tormented by my subconscious. This is different from normal because now there will be a visual component, and I’ll have a note from my doctor (also, I’ll eventually have to pry myself off the couch and get irradiated). Also, the worstest side-effects aren’t predicted to show up until week 2 or week 3; bad news is, they don’t think I’ll start recovering until week 10. Worse news - much, much worse news - is, after the six-ish weeks of radiation (for those of you keeping count, I have 30 radiation appointments, but since they don’t work on weekends, that works out to six weeks; and chemo every single day throughout), assuming that’s successful, I’ll get on a chemotherapy rotation, which means I’ll get three weeks off, and one week of chemo, for a whole year. FOR. ONE. WHOLE. YEAR. Which means, at my current life expectancy, I’ll be on some sort of unpleasant drugs for the rest of my life. Still, as I’m very aware, the phrase, “we’re extending treatment” is vastly preferable to the phrase, “we’re stopping treatment because it’s not working.” Also, if I do lose any hair, the clinicians think it’ll be in a very small, specific spot. Still, adding even another unpleasant side-effect seems excessively cruel.

And, I got some very reassuring signs today regarding my physicians. I never had any reason to doubt their competence, but, I have survived three tumors (so far) for fifteen years (the breakdown is; I got tumor #1 removed fifteen years ago, since then, I’ve had two more tumors), but it’s always good to have that confidence affirmed. Before I get there, a brief restatement to all future cancer patients (and humans in general); I’ve said it before, the crucial difference between a fatal disease and a dangerous disease is your medical team. Do not screw around with this, your life will depend upon it; do some research (Yelp does not count), and go straight to the best (the actual best, not the “Trump Steak” best). We now continue with the anecdote currently in progress.

During one of my many, many administrative/clerical intake interviews/vital signs monitoring sessions, an aide asked who my oncologists were, and I said, “Drs. X and Y,” and she, “Oh, they’re the best.” Now, it’s always possible - especially since we have a commander-in-chief who is hell-bent on destroying superlatives - that she was exaggerating, or just saying it because they bought her coffee or something, but, I know from fifteen years on the receiving end of modern medicine, that the nurses and administrative staff are usually where the buck stops, and they know a lot more than they let on, so their endorsements are usually reliable. Also, immediately prior to my serum injection, I was visited by Research Coordinator (and, to preserve everyone’s anonymity, I’m going to be extremely vague), who assured me that they only test drugs that are extremely promising. Which seemed like a regurgitation of Bioethics 101, until he also admitted that my oncology team will occasionally accept money to test drugs they know won’t work, then weasel out of that commitment through various medicolegal means and just keep the money. That might be some sort of standard, cancer research hack, but it’s still brilliant. And, even if they weren’t acting within the bounds of the law, there’s not a jury that would ever convict them.

As far as the radiation treatment, it went mostly-fine. To dwell on the negative (or to forewarn all future brain cancer patients), the weird plastic-mask thing is the most disturbingly claustrophobic thing I’ve ever encountered. I thought it was freaked out about it when they were fitting me for it, and it felt like some sort of weird fetish. Now, it feels like being smothered. The good news is, if you can resist the impulse to panic, and just remember to breathe, it’s not too bad after the initial shock (hopefully, that’s applicable to all my experiences over the next year). So, if you have claustrophobia or a fear of being smothered (a greater-than-average fear of being smothered, let us say), I’d definitely recommend asking about sedation beforehand. Hell, I’d ask about sedation the minute you get a cancer diagnosis, but especially look into it if you have claustrophobia and you’re getting radiation treatment and/or MRIs.

Anyway...

WEIGHT: about 210 lb (95-ish kilos). There were some fluctuations throughout the day (I got weighed several times throughout the day) between 209 lb to 217 lb, but that’s explained by both the incredible amount of fluids I’ve consumed throughout the day and whether I remembered to remove my shoes. CONCENTRATION: Pretty good; I made some decent headway in the Wodehouse novel I’m reading, even while being pumped full of saline and super-soldier serum (which is really saying something, because I really needed to use the restroom during that whole process). MEMORY: Not bad. I’m still missing or forgetting occasional stuff, which is a little upsetting, but I can still quote pertinent studies I read a few years ago. APPETITE: Decreased, but I’m still eating. I’ve also been drinking way too much water and/or Gatorade, and I started the day with a large, bacon-egg sandwich (heart disease be damned), and all that would chip away at the appetite even before factoring stress and experimental drugs in. ACTIVITY LEVEL: Normal. Normal-ish. I’m feeling sluggish now, at 9 pm, after a long day spent in waiting rooms, so it’s not like I turned down the opportunity to go jogging because I was feeling poorly (spoilers: I only ever run when being chased, or when I’m late for a plane). SLEEP QUALITY: Pretty good, for me. I got eight-ish hours of sleep last night, which is great for someone about to start cancer treatments, but I still have a big sleep debt. COORDINATION/DEXTERITY: Not bad, but I’m very slightly wobbly when finishing tasks/movements that require coordination. Starting them and the middle, I’m fine with, for some reason. PHYSICAL: Very much the same as yesterday, which is good. No new headaches or body-based symptoms, and the eternal suture-headache is quite tolerable. SIDE EFFECTS: The muscles in my upper body hurt. A lot. But it’s no worse than if I’d gone to the gym with someone named “Biff,” so I suppose I shouldn’t gripe too much, but it still hurts. And I can’t take aspirin, because I’m already at risk for bleeding thanks to the damned chemo drugs (I guess that’s my pain level - “Needs aspirin and will complain bitterly if deprived, but will survive without”). I’m peeing a lot - an awful lot - but I’m also keeping extremely hydrated, so I’m not sure that’s a side-effect. I feel oddly alert - like I’ve had half an espresso - but my body isn’t moving fast enough to keep up with my mind. It might seem excessively negative to keep track like this, but I actually intend to take careful notes in this area and send them all to my researchers at the end of all this.