Expect the Unexpected
Death is always unexpected. I know that’s the sort of pithy insight that keeps you all coming back for more, but stick with me. It occurred to me while writing about Dad yesterday that if he suddenly dropped dead, it would shock us all. Except it shouldn’t; he’s in his mid-70s, has several chronic diseases, and is now a cancer survivor (cancer survivors see a 30% reduction in life expectancy). Statistically, he’s approaching is due date, so to speak. And, yet, apart from that, he’s healthy.
Same goes for me. Admittedly, a 34-year-old dropping dead should be a surprise, but I’ve survived three brain tumors and am at 17 months post-diagnosis for glioblastoma (the median life expectancy’s 14 months). And I went through A Year of Chemo, including both the harsh-by-oncologist standards, and experimental, extra-spicy chemo. I should’ve, statistically speaking, drawn my last breath months ago.
And then there’s my grandmother, who’s in her 90s (I mean, uh, her 70s)(yes, she insists on that, which, by the time you’re 90, I think you’ve earned it). She also has osteoporosis and glaucoma. No cancer or heart disease, though. Again, statistically, if she were to die, it should not be a surprise, but it would. Apart from her age and chronic illnesses, she’s healthy.
If it seems like I’m qualifying a lot of these by ignoring statistics, well, I am; and that’s how humans work. Especially desperate humans. Christiaan Maurer, a hospitalier in Colorado recently-diagnosed with glioblastoma, said that he suddenly understood why terminal patients choosy risky care options with diminishing returns (or continue treatment with those diminishing returns).
On one of the cancer support groups I’m in, a common initial question/theme is, “Why bother if there’s only a 5% chance of success?” And I get it; I asked the same question 17 months ago. And the answer I give is, “Well, what other option is there?” If you don’t treat cancer, it’s not like you get another year of health and drop dead, you will see dramatically reduced quality of life on a week-to-week basis. Which is why you throw everything at it and pray something works. Another issue with brain cancer is how unbelievably rare it is. Yeah, 5% works out to one-in-twenty people, but what the statistics don’t show is, there might only be twenty people in the system with that diagnosis. It doesn’t change the stats, but it does make it seem more survivable. GBM is so extraordinarily rare that I’ve only personally met one other survivor. And then, because there’s so few of us, in another really weird, welcome to the upside-down world of survival, people actually started contacting me — strangers I’d never met — via social media to say that I’d inspired them to give treatment another go, or helped them dig up the strength to do more research and get a second opinion. That’s some crazy, hole-in-the-space-time-continuum shit that should never, ever happen; my life should serve as a cautionary tale, not an inspirational one. But somehow, as so often happens with a dangerous, unpredictable life based on a dangerous, unpredictable disease; it shifted. Again, statistically I shouldn’t be surprised that my life — and life’s purpose — switched dramatically; the last year has been characterized by chaos and unpredictability (and I’m still single, ladies). But, like the possibility of suddenly dying in my sleep, that sort of statistical certainty still caught me off-guard.
Which brings me to today’s message to all survivors and caregivers: even if you had no real purpose prior to diagnosis (as I did), you now have a solemn obligation to do your best to stay alive as long as you can, so the next group doesn’t have to ask, “Why bother?” I realize just staying alive to improve statistics might seem like an odd, intellectual exercise, but I’d ask; how would you have changed your approach to treatment and life if the stats were different at the start? It seems odd, but your mere survival will become important to someone out there, who will take the next step into the inky darkness after we’re gone. Again, humans don’t like statistics, we like stories. Make sure the next folks in line hear yours. And live life in such a way that, even if you’re statistically “overdue,” it would still seem a shock if you died in the night.
