How to Survive a Terminal Diagnosis, Part 1

It occurred to me, earlier — like, almost a year ago, during The Year of Chemo — that I’d been lectured to by my elders (the Baby Boomers) about how a single bad decision inevitably Destroys Your Life. This is the rationale behind the DARE program, abstinence-only education — most of the “scared straight” tactics that, ultimately, don’t really do anything other than scare people. I started my cancer journey (again, I don’t like that analogy, nor warrior analogies — this is a survival-horror movie) at age 17, with a benign tumor that was almost completely-resected. Which set me back 20 IQ points and took ten years to recover from. I have to wonder what my life would’ve looked like without something that substantially disruptive at the start (especially since a later neurosurgeon thought that one would’ve been a good candidate for the Gamma Knife, which is a little less invasive than a spelunking expedition through the frontal lobes). And, yeah, it’s true that one decision had a major impact, but I compounded it with a thousand other, little, bad decisions.

Most survivor stories I’ve heard are similar, in that there’s either an initial fortuitous event or discovery that is either acted upon — or ignored, which sets the tone for all subsequent decisions. You’re in reactive mode, not proactive — possibly for the rest of your life. You‘re probably familiar with Christopher Vogler’s line, “Every villain is the hero of their own story.” Cancer is horrible because, suddenly, you’re not even a supporting character in your own story. I relayed this to a friend who was concerned about a cancer patient friend of hers who hadn’t taken the most-aggressive treatment course possible, like I had. I didn’t really have any choice in the matter; when you hear the words “stage 4 brain cancer,” you start looking for a solution — any solution — no matter how radical or potentially dangerous it might be. It was pure luck I was eligible for an experimental chemo course — unpleasant as it was. But, it’s worth noting, everyone involved built upon that initial stroke of luck with better decisions and follow-through, myself included (for the most part).

In America, we get fed this motivational crap that, at some point, it’ll be okay to stop giving it 100%. You graduate from high school or college, and, usually, the tone is, “Congratulations! You made it!” when the real message should be, “Congratulations, now the real work starts.” This is so endemic to our society that it’s not at all uncommon for the truly lucky — Powerball winners — to go into debt not long after winning the lottery.

I think that — and granted, my pool of subjects isn’t really enough to draw any concrete conclusions (which, again, is indicative of glioblastoma in general) — far too many patients and doctors see “incurable” and “terminal” as interchangeable, and as permission to give up. And then, mistake gets piled on mistake until you’re a very-interesting cadaver. Just like a thousand little things had to go right to get me here (18-months progression-free), I suspect a thousand little things have to go wrong to kill a patient. Of course, my sample size is small.

So, when you find yourself with an incurable cancer, I’d recommend that your response shouldn’t be to roll over and enjoy your remaining time. It should be your call to get to work. Same thing, when you hear the words “No evidence of disease,” you should hear that as, “Keep it up.”

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Science journalist, cancer survivor, biomedical consultant, the “Wednesday Addams of travel writers.”

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