#ft horrible anatomy even with a reference

[lucywucy126]

Day 4 - with someone from another fandom or another dcu character

[braindamageforbeginners]

Campbell’s “The Highwayman”

So. I'm starting treatment tomorrow. Which means this might be my very last post. Sort of.I should point out that, although I'm afraid of dying (that's hardly unique), that's never been my chief fear. Don't get me wrong, I'm very scared of that possibility (and it's still one of the likelier options), but, far and away, the greater fear has always been that I'll suffer some sort of severe, permanent brain damage resulting in noticeable neurocognitive defects. Or, to make that less cerebral (as, indeed, my oncologists will make me - literally), I'm worried that treatment will make me dumber. Or mess up my memory abilities. Or steal my scientific literacy. Or steal my literacy. Or just make me less... well, me. I'm not great at being myself; I think I'd be hilariously bad at being someone else.

I've written elsewhere about how neat and strange individuality is - just on a biological and biochemical level (I’ll be repeating and/or paraphrasing some stuff I’ve written elsewhere, so forgive me if you’ve read this). To help me out this time (because I no longer have enough time to be direct), I thought I'd use Zeno's Paradox. Zeno was an ancient philosopher, who came up with the following hypothetical, and I've updated it for the modern reader (you're welcome). Let's put LeBron James in a race against a tortoise; however, that's hardly fair, so we'll give the tortoise a 20 ft (6 m, to my communist friends) head-start. LeBron will never even reach the tortoise, because, before he can overtake the tortoise, he has to cross half of those 20 feet (10 feet); before he gets there, he has to cross half of 10 feet (5 feet), and so on. The numbers get ridiculously small, but you get the idea - you have to cross infinity to get anywhere (which is also what it feels like convincing the insurance company to pay for radiation treatment, but that’s a different topic for a different time). The fact that people walk didn’t deter or invalidate Zeno’s hypothesis (philosophy, while fascinating, has very little practical application); then, many centuries later, in one of those moments I live for, science and math overtook philosophy and invalidated it. In this case, it came in the form of calculus, which takes all those infinite little fractions and adds them together to get a real, usable number (unlike philosophy, mathematics is enormously helpful, albeit sometimes in highly specific situations). The biological punchline of all this is that you are the end-product of countless interactions, collisions, mistakes, and encounters, from the sub-atomic level to the moon’s gravitational force on Earth (the tides are important for life on this planet). Human beings are very similar; it takes a lifetime of small, slight, random encounters, interactions, and collisions to make you who you are; perfectly formed by countless infinitesimal incidents that we can’t recreate.

The second part of this concept requires a little help from you, dear reader (I know, homework; I’m sure there are a few of you would switch places with me to get out of it)(also, if that swap were possible, I guarantee you that I would take it, no questions asked). Make a list of things that make you who you are - in excruciating detail, and including the most minute and irrelevant details; from the stuff that barely counts (”has a weird recurring dream about Godzilla”)(I can’t be the only person that happens to) to the big stuff (”loves spouse/kids/dog”). To connect this to Zeno; this is an endlessly long list. You want to write a lot of assorted details (”fully remembers details from Thanksgiving 2010″) and random quirks. Now, you’re going to hand that list to a random stranger and ask them to cross off five items on this list; those things are no longer a part of you. According to Zeno (and my oncologists), those things probably aren’t important in the grand scheme of things, and you will still be you. But will you, really? Will you know who you are? Will you know what’s missing from that list? And can you get it back, or is it gone forever, or is it not worth it to recover what’s missing? And when do you stop being “you?” Obviously, there are a few big-ticket items that would permanently - and terribly - alter you (see that “loves spouse/kids/dog” one), but, if you look at that list, it’s not a dozen major things that define you, it’s the countless, tiny, unimportant things (I realize there’s some overlap with the Theseus’ Ship, but I like math). Again, according to Zeno and my oncologists, these probably aren’t worth fretting over, but it’s not them on the chopping block.

The concept that we’re working toward is a working understanding/empathy of what it’s like to live with brain damage/neurocognitive impairment/neurodegenerative disease, so I’ll be a little more blunt. Imagine a life in which you are unable to remember where you put your keys, phone, and wallet. The minute you set them down, bam, they’re gone from your mind, even if you leave them in the exact same place you always leave them. If you want to leave the house, you have to physically look for them until you find these items. You’ll still experience the same aggravation and frustration as anyone else, the only difference is, you’re usually unaware that there was a time - very recently - when this wasn’t a real problem. Those are the good days - the ones when you’re smart enough to observe these sorts of deficits. Other days - and these constitute at least 75% of your time - are when you don’t have that frame of reference; you’re just aggravated and upset that leaving the house now takes 45 extra minutes. And tired. And, a philosophical question that I can answer; what’s worse than being dumb? Being not-quite smart enough. Imagine a world where you’re intelligent enough to be ambitious - but not intelligent enough to accomplish those ambitions. That’s the fun little parting gift from neurosurgery #1. This is why I’m get a little paranoid whenever a clinician admits that there will be some brain damage - it’s like statisticians using the word “dismal,” it’s got to be really bad if they’re going to warn you about it prior to starting treatment. And there are still no guarantees that this will work, or even that it’ll buy me anything more than a few months, and that’s just a few months of my heart beating. What if this is as good as I will ever feel, for the rest of my life? I’m not feeling great right now, but the thought that this is as good as it gets is, to say the least, exceptionally unpleasant (on Thursday, in the final pre-serum screening, I was given three words to remember - “truck,” “apple,” and “blue” - and I couldn’t remember them at the end of a ten-minute interview. Not exactly hopeful, since I haven’t even started treatment, but the stress and lack of sleep is definitely a factor to consider). And that’s definitely not going to get better in the near future, unless my doctors start prescribing me more powerful drugs (with my luck, I come down with a horrible disease the minute the medical establishment starts getting paranoid about opiate precriptions)(but, hey, thinking positively, marijuana will be legal here in a few weeks)(I mean, uh, drugs are bad and you should never take them, kids)(unless they’re nearly-fatal drugs prescribed by a licensed doctor to, uh, kill very specific pieces of you)(yes, that’s how this medieval cancer treatment monkey-business works).

I’ve also thought a lot about the stages of grief, like you do when you’re mostly just waiting to either die or the treatment to work (and this sort of horrible uncertainty is - far and away - the most unpleasant emotional situation I’ve ever experienced), however, no one seems to have informed my limbic system, because I’m hitting all five of those simultaneously. Sort of, I’m still stuck in “bargaining,” I still can’t escape the idea that, maybe, with the right treatment and doctors, I’ll make it past this one - of course, the basic mathematic probability that I’ll almost certainly die within the next decade hasn’t really sunk in, but that’s also because I’m so exhausted and scared all the time that basic planning beyond a 72-hour window is completely beyond me (this might be some sort of self-preservation thing).

This is not to say that I’m automatically opposed to change, but the potential for dramatic and immediate neurocognitive change is dangerously high. Imagine the sorts of personality and emotional changes that occur just due to hormones, or antidepressants, or other drugs, and you can imagine the changes that can occur by dramatically altering my anatomy. Sort of; this is more like slowly stripping out pieces of me, and potentially who I am. Which is unpleasant enough, but, because I’m still tumbling down the rabbit hole, I recently learned something just as problematic: you only get one radiotherapy course per organ per lifetime. Which means I am pretty much all in on this gamble, and if this disease ever returns (spoilers; this is the second time I’ve come developed a malignant (or potentially malignant) glioma), thanks for playing. I will probably, thanks to my lab rat connections, be in line for whatever crazy new, experimental treatments that science can concoct, which is a good thing. But, how many AIDS patients died waiting for science to catch up to them? And, since we’re cutting funding for health insurance and medical research, is that realistically a good gamble? These things bother me in an abstract sense, but that 72-hour planning window is helpful in this situation.

This blog exists to painstakingly document my path so that the next person in my position might have an idea of what to do (or not to do), but, more importantly (to me, anyway), I’m doing this for the exact reason any human has ever done anything - from making the great pyramids to having children (although I realize the stated rationale at the time might be slightly different) - that there might be some small scrap of me that remains in the world, if the battle goes ill. It’s sort of like scribbling “Kilroy was here” in wet cement (and blog sites owned by Yahoo will last forever, right?). I’m not going to leave any grand legacy for the ages, unless everything goes much, much better than expected and, even then, I’m not likely to change the world (for all you future generations that might be reading this, your self-confidence decreases dramatically when faced with a grisly ending). This blog is also, if everything goes right, a baseline, a form of self-reflection for me to figure out a way to get back here, if everything goes well (again, even if everything goes flawlessly and better-than-expected, there are still going to be some neurocognitive changes). I don’t know who will be writing this thing in 24 hours, or in several weeks (major side-effects and problems are expected to start showing around Week #3), hopefully that guy won’t be too different from the person typing all this, and, if that’s the case, hopefully this will be some sort of guide to get back to normal (well, “normal” for me). And maybe someone else can get similar use out of this thing.

Obviously, there are going to be some days where I don’t feel like writing (if I go weeks without checking in, you can start to panic), or I’m too busy (if, God forbid, you develop cancer, you’ll spend many, many happy hours in the hospital), so I thought I’d just give a quick run-down, starting with height and weight (I realize those are mostly-irrelevant, and I won’t mention my height again, unless that changes). Hopefully, that won’t be too hard to keep up with over the coming weeks. HEIGHT: 6′ (183 cm) WEIGHT: about 210 lb (95-ish kilos) CONCENTRATION: Good, though I’m somewhat distracted; ability to start and focus on tasks is great, although completion isn’t always guaranteed (I still haven’t finished watching the latest episode of “Happy,” for example). Basic tasks are still pretty easy, but you don’t get many points for that outside of a psych researcher’s office. MEMORY: Not good, for me (I usually have close-to-eidetic memory), but still better than the average person’s. Still, using myself as a baseline, there’s been some noticeable-but-not-significant deterioration in that area, but, again, I’m not getting much sleep and I’m super-stressed. Still, I’m not forgetting the important stuff, yet. APPETITE: Good. I’m still eating as much as I usually do, which is a lot. ACTIVITY LEVEL: Good. I didn’t go to the gym today or yesterday, but since I went to the gym four or five times over the last week, I’m not going to beat myself up too much for it. SLEEP QUALITY: Nowhere near good, but much better than it was two weeks ago (but that’s not saying much, since I’ve gotten about 2-6 hours of sleep, on average, over the last month). Still, I’ve never slept very well (and I’m probably never going to sleep well again, not counting general anaesthesia), so it’s a little hard to gauge that. COORDINATION/DEXTERITY: Much, much, much better than it was this time a month ago, but my whole left side is still about 5-15% below-normal. I’m readily completing basic two-handed tasks, but I’m not going to be a concert pianist any time soon. Or in the next life, come to that (assuming there is a next life).

Tune in soon for the continuation of the reality-TV remake of “Flowers for Algernon.” And a very merry fuckin’ Christmas.