#the influencer is using an actual eyeball to demonstrate btw

[hikaaa-bi]

calling it rn there’s gonna be an episode with an ASMR storytime where the person narrates a deeply disturbing and gorey event, real sounds included

[braindamageforbeginners]

A Moment of Introspection (or, Why Positive Thinking is Actually a Bad Thing)

Since starting the whole end-stage brain cancer thing, I’ve gotten a variety of messages from assorted friends and acquaintances wishing me well - it's quite heartwarming, actually - and, although it's universally well-intended, a significant percentage (about 20-40%, I'd estimate) have the glaring subtext, “Cheer up, for Chrissakes.” I appreciate that, for most people, that's intended as a sincerely well-meaning sentiment, but, uh, no; no thanks. I was never a cheery person, I'm unlikely to turn into one under current conditions. All of this reminded me of why I'm fastidiously documenting this whole process. We tend to see dying people as “the great other,” (believe me, we really do, you just don't experience it until you're on the wrong side of the equation), and that colors a great amount of my interactions - you can kind of simulate this experience, by spending a day where you don't discuss, or do, anything pertaining to a time frame after the next six months. It'll be easier for some of you than others.

The ClifNotes version of this rant is how to properly respond when you hear bad news about a friend or neighbor, and why positive thinking isn't such a good idea. We’ll tackle the second one first, because I'm a Star Wars fan.

When you develop a dangerous disease, you will be overwhelmed by many things, but the most annoying are people telling you to remain positive. This is a bad idea on many levels, not least of which because it could kill you. When I first found out about the latest tumor in July, I was told not to panic, that this was a fairly slow-growing tumor, and I had some time to deal with it. When my tumor was removed in November - that's about 4 months, for those keeping score - the tumor had leap-frogged from stage II to stage IV.  If I had freaked the fuck out the minute I heard the word “tumor” and had it removed immediately; I would be in a completely different diagnostic category, with a completely different prognosis and life expectancy. And that wasn't even positive thinking, that was just relying on well established medical facts and/or probability. So you can understand why, perhaps, I'm suspicious of positive thinking at the moment; it’s demonstrably dangerous to me. So, you'll forgive me for operating under the assumption that this will be my last Christmas. That may or may not be accurate, it's simply an inference based on current events (speaking of which, there's an excellent chance I’ll eventually lose my insurance if that despicable tax bill becomes law, which will result in blocking access to care, which will inevitably end in a sub-optimal result for me). I suppose you could take that the other way, and assume, “Well, the disease behaved unpredictably already, that could swing the other way, too,” but it's still not a bright idea to bet on a team on a losing streak. Also, I already beat the odds - for fifteen years. This is just the law of averages catching up to me.

We are also an outcomes-oriented society - no one’s about to show up and give me gold star for living 30-odd years as a decent, kind human being who never really achieved anything of import; it's unlikely I'll get credit for weathering this particular shitstorm with grace and dignity (BTW, dignity is the very first thing that gets jettisoned in these situations; I think I left any remaining scraps of that on the floor of the shower when I had to have a nurse physically support me throughout the entire shower/basic hygiene process). I should get credit for not strangling any of the nitwits who try to cheer me up the wrong way.

THE PROPER WAY TO CHEER ME UP: Tell me about your aunt who beat brain cancer (I’m actually being sincere). Maybe leave out that epilogue about her living a full three years past what the doctors expected; I'm not in a position to refuse any extra time, but I'm ambitiously hoping for more than five years. Call me crazy! Or, y’know, just treat me like a regular person who's in the middle of a bad divorce. I'm aware that my situation is much worse, but I can not escape the constant reminders that I'm in a really bad way (I'm taking very strange meds that give me insomnia and heartburn; I'm on the phone with my doctors, nurses, and insurance company every hour or two; I could go on), so it's nice to be treated as a person, and not a disease bound in human flesh. I love Oprah, I love Oscar Wilde, but until they're sitting in a waiting room next to a man with literally only half a face, please don't spout inspirational garbage unless you want to make it onto the “To Stab” list.

Speaking of being an outcome-oriented society; a great deal of my (and probably most other cancer patients’) dread and anxiety is based on the uncertainty of outcomes. We tend to be of the mind-set that our fear of an event is much worse than the event itself; and, normally, I'd agree with that sentiment. Except, at almost every single step in the diagnostic/discovery process, the outcome has not only been far worse than my worst fears, it's outstripped my doctors’ predictions. True, I have gotten slightly lucky in a few ways (the surgery went far better than expected, I do have a mutation that gives me a 40% chance of survival with conventional treatment, I'm in a drug trial that should improve those odds, and I might be able to get insurance next year), but even those all come with caveats and qualifications. And they're weighed against an uncertain future in which even death isn't the worst possible outcome (remember Two Face in the waiting room? Yeah, it's not likely to happen to me, but neither was stage IV brain cancer). So, you might understand why, with a future that's decidedly more S. King than B. Potter, even with the rosiest predictions (and not a whole lot of future, at that). The happiest baby rabbit photo in the world isn't going to improve those odds, so keep the motivational posters to yourself. If things are looking better in a few weeks, yeah, sure, I'll be cheerier, but I haven't even started treatment yet.

I realize that most of these misfires come from the human impulse to do something to help each other (again, knowing that people are just well-intentioned idiots has saved a few of those idiots from a much-needed eyeball gouging), and it just comes out wrong. I try to preface everything I write with the warning that I don't speak for all cancer patients, just me. Today, I'm going to abandon that stance and speak as Cancer Man (but not the cool, X-Files one), patron saint and mouthpiece for all patients with terrible afflictions, and give you, dear reader, the perfect response when you hear that unimaginable tragedy has struck someone you care about. I'm so confident in its efficacy, that it will work not only for cancer, but for almost all diseases, and, indeed, tragedy in general, from unexpected weight gain to a neighbor losing their child. However, before we get there, let's look at the very best, and very worst, reactions (there's only one of each, I won't hold you in suspense for too long).

So, far and away the best response to my situation came from a former boss in the biotech industry, who had heard of several promising clinical trials, and offering some advice about trial eligibility. I knew I was a decent employee, I didn't think I was that good.

Now, the very worst response - and the one I've possibly received the most - is, “"I could get hit by a bus tomorrow.” Or something similar. Usually this is whenever I bring up the odds of me making it five years (about 40%), because Americans don't understand how probability or basic math works (this also explains our economic policies). Fortunately, most people realize it's kind of a dickish thing to say, “I can completely empathize, because I am also mortal.” It took me a while to figure out the proper response to that, which is; “"I'm so glad you agree, let's play some Russian Roulette.” Once I break it down that way - that I'm in a life or death situation over which I have absolutely no control - most people back off.

Anyway, here's your go-to response whenever tragedy strikes someone you know; “"That's awful. I am so sorry, and I have no idea what to say. Is there anything I can do?” That will work for every unpleasant disease you can imagine, I'd wager my life on it (another phrase that used to mean something).

And the only person who's inquired - unprompted - about my emotional state was my radiation oncologist. She was sort of double-checking that I was depressed (or trying to figure out if the cancer was causing it, I'm not sure). Either way, the implication was the disease could be directly influencing my emotional state and/or outlook. If you're still having trouble understanding why I'm slightly upset, imagine having an alien parasite in your brain that can alter your very perception of reality - what we usually call our sanity - and knowing that, if science fails, things will get much, much worse, and eventually, you will die. That's not a problem if you're Kirk or McCoy, but let's say you're slowly becoming aware - like Rosencrantz and Guildenstern - that you're a nameless red shirt. BTW, if Spock doesn't synthesize an antidote in time, these dispatches are going to become very surreal as I descend into madness and pain.

Finally - and don't worry, I'm mostly done with self-pity - you'll have to be patient, I literally found out about all of this five weeks ago. It's all a little much to adjust to in less time than it takes to establish residency in most places. Hell, just for comparison, my chemo/radiation course is - minimally - six weeks. Which brings up my final point (hang in there, we’re almost done), why I'm writing these things. In our society, we tend to view dying people (or those in grave situations) as The Great Other. We want Morrie Schwartz, or we want sick people to shut up and go away (BTW, the feeling’s mutual on the other side of the fence, sick people just want you to give us morphine and let us die in peace). I have not heard of anyone undergoing this, uh, process, while maintaining their surliness and cowardice (and you would be, too, if you were only getting a few hours of sleep every night) - not that I'm dedicated to those traits, but they come naturally to me in crisis (or this particular crisis; I don't know what I'd be like if I was sleeping well and didn't have to call some specialist or billing department or coordinator every hour or so) - and I think future cancer patients should be assured that a bit (or a lot)(or even massive amounts) of griping and fear is fairly normal and has no real effect on the outcome (it doesn't, I haven't seen a study conclusively showing any correlation between attitude and patient outcomes). And this whole writing project will help me keep track of my efforts to find the world’s funniest cancer joke. It has to be out there, somewhere; I've been unable to shake the feeling that I'm somehow involved in some horrible, tasteless joke (and I've crunched the numbers; this whole thing is so statistically outlandish that finding out I am some sort of fictional character in an elaborate story about end-of-life issues would not be the most surprising (or upsetting) discovery I've made this month), and damned if I'm going to leave before figuring out the punchline (of course, I'm about to be damned, anyway; my mother described the radiation waiting room as “the line to cross the Styx”). And finally, I'm doing this because I still can; there may well come a time when I'm unable to write - a thought that scares me far worse than dying. And it may very well may happen; after all, we live in a universe rich in possibilities.

In conclusion, if you feel the need to cheer someone up, there are other cancer patients you can bother. Some of them are probably serene and wise, even (those are the patients with personal assistants to wade through the vast pile of BS that is the bureaucracy of the modern medical-industrial complex). If, on the other hand, you're interested in seeing how far down the rabbit hole goes, with a host who isn't afraid to ask, “This is really fucked up, right? This isn't just me, is it?” I'm your man. For good or bad, my life looks the way it does because I'm too lazy to pretend to be someone I'm not (well, that, and life-long neurological disease); and I'm certainly not going to work on that skill while simultaneously trying to survive what promises to be the very worst (possibly even the very last) two months of my life. Speaking of which...

UPDATE: I met with the researcher running the neurocognitive assessment trial, which is kind of fun (the neurocognitive tests are kind of like some sort of therapy for dementia patients (which, I suppose, could describe me soon enough); you get to draw things (sort of), you play word games (sort of), and you get to play with blocks (sort of)). And then I got to fill out some forms to assess my current neuropsychiatric state. I realize I use synonyms for “fear” a lot on this blog, but the questions on the psych form were deeply upsetting in their implications (”Have you had recent troubles articulating your thoughts or feelings?” YOU. MOTHERFUCKERS. Writing is the last thing I have any real control over; don't you dare take this from me). Good news; the researcher assured me that current radiation treatment is much less nuclear holocaust-y than old fashioned radiation treatment, and the goal of this study is to demonstrate just how much better it is for patient cognitive abilities. She was less happy about my constant pestering her about specifics (”Have I experienced balance problems in the last week? Yes, but since someone was sawing through my somatosensory lobe a month ago, I don't think it was a psychiatric issue.”), so she eventually told me to shut up and scribble any notes or caveats in the margins (I don't think anyone will be amused that, after I rated the statement “I am afraid of dying” (I very strongly agree with that statement, obviously), I wrote, “There is about a 60% chance I'll die in the next five years, it's not a fear, it's just basic math.” Still, it was reassuring when she told me that she does see most patients again at the three month follow-up, and that most of them are mostly-intact. And, in surprising news, I finally saw the psychooncologist; and she seemed remarkably empathetic and intelligent (I guess it's just the administrative staff that are cruel and incompetent). I guess I have adjustment disorder (no shit, Sherlock)(also, there's probably a few readers who saw that coming). But, bigger news, the antidepressant I was on is linked to anxiety, insomnia, and, wait for it... seizures. So, I will be transitioning to a less dangerous (for me, anyway) antidepressant over the next few weeks, so things might get a little odd around here during that time. She (the psychiatrist) also said something to mull over; (and I'm paraphrasing), “Any time you cut into the brain, you permanently change the neurochemistry. And we've done that to you three times since you were 17.” I also got a call from my original mad scientist oncologist in Northern California (or one of her Igors, anyway), reminding me that she wants an MRI a month after starting radiation, which is reassuring. I have no illusions about her investment in me; it makes for a much better case study if the patient lives longer, and I am a once-in-a-lifetime medical specimen (I don't mean that in a sleazy, “Welcome to the gun show” way; I once calculated that there are fewer than 250 people with similar medical histories... on planet Earth). Still, the more people who want me to live, and are in a position to help make that dream a reality, the better. Now for the bad news; the radiation department is still haggling with my insurance company, and that's holding up this whole process. However, they're expecting to hear back in a day or so, and, as Dad noted, the insurance company has been quite generous and almost-mammalian during this whole process. All I want for Christmas is chemo.