An old friend got in touch with me regarding my recent anniversary (25 months post-diagnosis)(I’m always a little fuzzy about this, since the dates of discovery, start of treatment, diagnosis (made via biopsy samples — I guess it wasn’t totally clear at the time), and No Evidence of Disease are all different dates; but the standard rule for brain tumors is the diagnosis date). She complimented me on my will to survive. Specifically, I’m guessing, the 41 infusions (Marizomib), 90-ish oral chemo doses (Temodar), three neurosurgeries (over 15 years, so I did have a bit of breathing room between those). She wondered if she could do it. I know she can, even if she doesn’t.
Once you get diagnosed, yeah, you lose a horrifying amount of privilege you probably never even realized you had, and staying active in society is much, much harder, but, at the same time, Planet Cancer and its inhabitants do open up to you, in a way that we don’t, necessarily, for researchers or the general public. And here’s the thing. Amongst survivors, I am just an insect. I’ve met a man who has had four neurosurgeries, and is undergoing more radiation for metastatic prostate cancer. I’ve heard of survivors undergoing 100+ infusions. I know of people who are terminal, who elected for experimental treatment and/or palliative care (so, bit about that — there are two different views on palliative care, the predominant one being that it’s to ease pain and address end-of-life issues)(the alternative view — one my oncologists patiently explained to me after I had a melt-down at seeing one of their listed sub-specialties being “palliative care” — being caring for people who have multiple underlying, dangerous conditions — obviously, if you’re in it to win it, you want people who ascribe to the latter school of thought, not the former). There are, realistically, probably as many different ways to survive a terminal diagnosis as there are humans on the planet. Grim and dour as it might sound, you’re all going to be there, someday.
Cancer patients are hardly unique amongst humanity in that regard — we’re not really so different from anyone else, we’re just ahead of the curve, in terms of accrued tragedies. And anyone can — and will — do it.
To start, a David Foster Wallace quote that’s applicable:
The so-called ‘psychotically depressed’ person who tries to kill herself doesn’t do so out of quote ‘hopelessness’ or any abstract conviction that life’s assets and debits do not square. And surely not because death seems suddenly appealing. The person in whom Its invisible agony reaches a certain unendurable level will kill herself the same way a trapped person will eventually jump from the window of a burning high-rise. Make no mistake about people who leap from burning windows. Their terror of falling from a great height is still just as great as it would be for you or me standing speculatively at the same window just checking out the view; i.e. the fear of falling remains a constant. The variable here is the other terror, the fire’s flames: when the flames get close enough, falling to death becomes the slightly less terrible of two terrors. It’s not desiring the fall; it’s terror of the flames. And yet nobody down on the sidewalk, looking up and yelling ‘Don’t!’ and ‘Hang on!’, can understand the jump. Not really. You’d have to have personally been trapped and felt flames to really understand a terror way beyond falling.
The way to get into a survivor’s head, here, is that we know denial and/or refusing treatment leads to a horrible, Hallmark movie channel death. Treatment may or may not work — but, when faced with an uncertain outcome or the certainty that’s been hammered home by the Hallmark channel, that uncertainty starts looking pretty good. If the choice is, “Literally starve to death because cancer has completely hijacked your metabolic processes” or, “Hundreds of infusions, potentially resulting in more life (or, at least, a less-gruesome death,” Option B starts to look really damned good.
The biggest, hardest mental flip to make in survival is learning that uncertainty is, suddenly, far more preferable to certainty. You probably have lived most of your life with a strong preference to certainty and security. Everyone has. Now, let’s pretend that you are in an alternate dimension where the news only comes in three flavors: bad news, worse news, and no real news. That last option looks really good in that light; and it’s how survivors can announce, “Well, the tumors haven’t shrunk, but they aren’t growing, either,” with a smile. Yeah, the situation has not improved, but it hasn’t deteriorated, either. Again, if you’re a healthy, able-bodied person, yeah, a bad situation that stays statically bad is a sub-optimal outcome, but, on Planet Cancer, the Golden Rule is, there is no situation that can not get worse. No one here likes uncertainty any more than you probably do, but we’ve just learned that, of all the likeliest outcomes, it’s not a bad outcome. In Wallace’s analogy, it’s like surveying the skyline as the flames are approaching, and noticing a lot of those neighboring buildings are closer than you first thought. Yeah, you might break a few limbs on the way, but it beats burning to death. You’d leap at that one, too.
If there’s one thing to take away, it’s that survivors aren’t motivated by any abstract benign motivations like courage or bravery or even willpower. It’s simply that our fears of the likeliest outcome completely dwarf and subsume any other fear, pain, or complaints we might have. Don’t get me wrong; we’re not happy about it, and that myth about the stoic, even-tempered, consistently wise dying person is a myth. We’re probably just as surly, terrified, bad-tempered, and cynical as you’d expect. We are, in point of fact, just like you. We’ve just seen some serious shit you haven’t seen, yet.
Two things you need to know if you or a loved has cancer, or plans on getting cancer (because I’m inundated with questions/requests related to how I “beat” a terminal diagnosis, even though, by definition, you can’t “beat” it — it’s just a question of whether it’s terminal now, or later)(hint, later is always better), first, that the half-life of all medical knowledge is four years, and only a few survivors qualify for further treatment in the event of metastasis or recurrence (usually due to oncologists doubting the success of treatment and/or that the patient will survive it). In such cases, your goal should not be to survive or beat a terminal diagnosis — it should be to survive four more years, and remain a candidate for further treatment. That makes your overall goals much easier and more attainable. Again, though, you’re going to have to get comfortable living with uncertainty. A lot of patients (or friends/relatives of patients) aren’t terribly happy when I point out that there isn’t some sort of secret magic cure (I mean, I was on an experimental treatment, but, if my estimates are correct, MRZ should be on the market before 2021), but this is really the difference between survivors and caregivers — they want a magic cure, because that’s the lie our society has fed us — that there is a consistent, constant, linear progression of scientific development, instead of it going in fits and starts. Most survivors usually have strapped in and are mentally preparing for the poop sandwich we’re facing.
And we’re not going to start out sunshine and roses, nor is it fair to expect that of us on Day 1. The first few rounds of treatment are hard, frightening, and unfamiliar. And either it doesn’t work (in which case, review my articles highlighting the importance of tenacity and adaptability), or it does work. In the case of MRZ, it’s really hard to see “improvement,” because the drug isn’t designed to attack or shrink tumors — it stops them from growing and spreading. Literally, the only evidence you have that it’s working is that things don’t get worse. Which brings you that much closer to your four-year goal. In Wallace’s analogy, you’re not going to get a rescue helicopter, but you maybe spot a rickety-looking fire-escape you might be able to jump to on an adjacent building. Survivors face a host of horrifying possibilities and set-backs, but I’ve been able to identify, in successful survivors, the key words there are “survivor” and “possibility.” And the resignation that things will get worse before they get better (to better address my friend’s issues, cancer survivors know — on some level — that life is going to get worse, and that process will, eventually, stop — the choice we face is, if we recover at that end of it). The thing is, like leaping off a burning building and aiming for that rickety fire escape next-door; once you make that decision, you’re committed, no matter how many second thoughts you have on the way down.
So, to everyone worrying if they’re going to be able to do it when it’s their turn in the hot seat; you can. I actually found a quote about this, in a series called Shadow Ops (by a guy named Myke Cole). The only thing you need to know is, in this series, magic is a real thing, and people randomly develop (frequently frightening, dangerous) magical powers (in the series, referred to as “latency”)(there’s probably a metaphor for another vulnerable minority in there), and then come under governmental purview.
“Right. That’s me, a fucking folk hero. No, skipper, I was a J1. I pushed paper. Before I came up Latent, I’d never pulled a trigger off a range. And then came FOB Frontier. First I had to fight. Then I had to lead. I was suddenly responsible for thirty thousand men and women and a couple bilion dollars of equipment in a war zone. I kept shaking my fists at the sky and crying, ‘I wasn’t trained for this! I’m the admin guy!’ I compared my insides to other people’s outsides. I kept thinking that the 11B types around me were spit out into the world steel-eyed and ready to kill.
“And now I’m standing here looking at you, salty as hell, running cutters for what? Ten years?”
Bonhomme’s eyes narrowed. “Thirteen.”
“Thirteen years.” Bookbinder nodded. “Master of his element. I’m realizing that everyone has this experience. All of a sudden, you’re in the hot seat and you feel like a fucking fraud. Am I right?”
Bonhomme said nothing.
“Of course I’m right. But that’s everyone. We’re all frauds. We’re all just pretending that we know what we’re doing. The trick is to pretend so well that you convince yourself long enough to get through the rough spot.”
“This is your crucible moment, only you can’t see it because you’re in it.” He reached out and gently put his hands on Bonhomme’s shoulders again. “But I can see it. Because I just went through it myself. And I can tell you, the guy that comes out on the other side isn’t going to recognize the guy you are now. But that guy needs the guy you are now to pull the fuck together. You can do this. Believe me. I know.”