So, the tenth of every month, I put on my nice Captain America shirt (yes, I have more than one; don’t you?), dig out my Stetson, and snap a selfie (actually, I don’t; I usually get a friend or family member to do it). If the outfit seems oddly specific, well, it’s what I wore to almost every one of my chemo infusions (there were one or two where I wore “guest shirts” that friends had sent me)(I got the hat prior to going bald, because, after doing some research, I figured baseball caps and beanies were outdated). And I didn’t die, nor did my tumor regrow or metastasize. Which means that get-up is now, officially, “lucky.”
My step-mother, who knows I’m skeptical by nature, still ribs me about the concept of “luck.” This from a female Baby Boomer who was born into the right place and time to get an affordable education that lasted her entire lucrative career. The scientific term for that is, “dependence on initial conditions,” and you’d know it better as, “Chaos Theory,” or, “the rationale behind one of the Jurassic Park sequels.” And, I really don’t know. I know that I have a diagnosis that is so dangerous, prognosis is measured in weeks or months (not years), I know that it is so unpredictable, the disease actually jumped several tumor grades in a few months — virtually unheard of. And I was in the perfect place at the right time to be recruited into a clinical trial targeting the specific mutations of my tumor. I am painfully aware that random chance governs human existence to a degree we don’t admit to (my go-to exercise to demonstrate this is, “Make a list of all the times your life was changed — or would’ve been changed — if you’d been twenty minutes late or early to something”)(in my case, my cancer would’ve gone undetected, likely for years, until it became fatal). See? Luck plays a bigger role in our lives than we’d care to admit, especially in a society that plays to the egotistical illusion of self-made people (or self-made anything).
This month will mark 17 months progression-free survival (for those of you new to the world of incurable diseases, “progression-free” is the technical term for “the disease hasn’t progressed”)(which is what you’re hoping for). And I’ll get an MRI. I’m scared shitless about the MRI. Don’t get me wrong, I’m not wild about the procedure itself, but I’m far more worried about the results. Healthy people usually chime in, “You don’t have any reason to think you’re sick, do you?” No. I just have history and basic math on my side. So, unlike other cancers, brain cancers are particularly dangerous not only because of their poorly-studied (and rare) nature, but because there usually aren’t any symptoms until it’s too late. The brain has no pain receptors in itself, so you don’t get headaches until it’s too late. And, if your skull formed properly, you can’t really feel yourself for lumps. Which means that you’ll continue life as-planned until, BAM, sudden cluster migraines and/or fatal seizure. By which point, it’s usually too late to do much.
My story is much stranger and more horrifying. In the standard cancer survivor story, a healthy person gradually gets sicker, and, after misdiagnoses and mismanagement, eventually gets a dreadful diagnosis, and, after enduring horrible treatment, gets better. I was diagnosed at age 17 — this July, I will have spent more of my life with brain tumors (sort of) than I did when healthy — and have suffered the drastic side-effects and consequences of treatment ever since. Literally; my entire adult life, I have never been both tumor-free and side-effect free simultaneously. And the diagnoses have consistently gotten worse, until I got a terminal diagnosis; glioblastoma. Now, I have great hope that I’ll live long enough for Tocagen and other biotech/pharma groups to develop some sort of better, longer-lasting treatment, and I’ll live happily ever after. But that’s betting against 17 years of recent history; so, when people ask me if I have any reason to be afraid or nervous; I usually respond that I didn’t the first three times, either, and was still caught off guard. So, for me, getting a scan feels rather less like opening the big envelope from Stanford or completing a marathon, and much more like sitting down at the table to play Russian Roulette. As far as I can tell, I’m far from alone in that particular neurosis, but other survivors with recurrences talk about how they knew — from physical symptoms or complaints — that it had come back. I, on the other hand, feel fine. Which is exactly how I felt, physically, every single time I’ve been diagnosed. You can imagine the fun new, almost-Woody Allen-esque set of neuroses and hypochondrias that come when you have a disease that has a 100% recurrence rate, and the primary symptom is that you feel okay. Or you suddenly get struck by a fatal seizure.
People are right in that you can’t live life like that, but you can’t really escape or forget it; even with the powerful and exotic psychiatric drugs that were made immediately available to me upon diagnosis, it’s hard to put it out of your mind. Especially when you need an MRI every three months, and various pills and prescriptions constantly on refill. It’s the elephant in the room… that follows you out of the room and into the next one. And just stares at you uncomfortably.