Scanxiety
So, I’m going in for an MRI next Tuesday. I have one every three months. If that seems a little excessive or inconvenient to you, I absolutely agree. However, “every three months” beats the hell out of “every four weeks” which is what it was when I started cancer treatment in December 2017 (after a very successful surgical resection). It would be something of an understatement to say I’m worried. According to the CDC, glioblastoma has a higher five-year mortality rate than HIV, but, even with my “lucky” ATRX mutant gene (a predictor of how effective conventional treatment is), I get a 30–50% five-year survival rate (for everyone wondering, it’s not that, at five years, all cancer survivors drop dead, that’s usually when most studies stop tracking us). I haven’t had any new or particularly interesting symptoms, apart from worse-than-usual allergies.
Most people — even other survivors — might be a little surprised to learn about my level of apprehension regarding upcoming events (everyone understands scanxiety, but some of us are a little surprised at the varying levels of that anxiety from person to person), especially since there have been no new, noticeable developments. This is where my unique survivor story and history comes into play. In most survivor stories, there’s some protracted or suddenly-acute illness that spurs them into action — something like, “…and then my foot exploded, and I KNEW my life would change.” In most cancer survival stories, it’s a sick person who gets sicker or continues to be sick through a series of misdiagnoses, until some enterprising young physician (traditionally played by someone like Ellen Pompeo or someone else who is unrealistically good-looking)(NOTE TO SELF: see if “Zoolander, MD” is trademarked) takes note, orders the correct test or makes the correct diagnosis, and then the survivor goes through treatment, and, after chemo, starts feeling normal.
My cancer story is dramatically different — it’s of a healthy person being told they have a brain tumor, then slowly succumbing to treatment. I was recently told by an 82-year-old, multiple stage 4 cancer survivor that she was initially diagnosed in her 30s, after she’d started a family, established a career, all of that, and couldn’t imagine getting major, nine-hour neurosurgery before she could legally vote (yeah, if you’ve met me after 2002, you’ve only known the severely brain-damaged and/or organic brain disease-y version of me). I’ve never had that, “And then my nose fell off and I knew I was in trouble” moment, which is almost troubling unto itself, for reasons I’ll discuss shortly. Literally, all of my “You’ve got cancer” moments started with me feeling physically fine (sort of — they caught Tumor #1 in a CT scan after I rolled my car, and, since then, I’ve been tagged and tracked), and then a doctor saying something like “We’ve noticed something strange in your results.” The most recent one — actual, full-blown, typically-terminal (we’ll get back to that shortly, too) cancer — had been tracked for the better part of a year, and was initially diagnosed as a recurrence of a low-grade astrocytoma; I’d been waiting for a slot in an immunotherapy trial to open up, and, by the time it did, I went in for the initial scan; after that, my neuro-oncologist asking me if I was comfortable before we got started (note to all my physician friends, if you have to deliver really bad news NEVER start by asking if the patient is comfortable or if there’s anything you can do for them — that is now the medical equivalent of the pick-up line, “Did it hurt when you fell from heaven?” — you’re not comforting them; you’re emotionally priming — possibly even triggering, in my case — them for horrific news), and proceeded to inform me that my tumor had jumped a stage, was now considered brain cancer, and I was, unfortunately, no longer a candidate for the clinical trial I was in. I’m condensing and paraphrasing the conversation; she was far more empathetic and kind that I’m making her out to be. Understandably, my memory of events is a little blurry.
My, “I have cancer. I am fucked.” moment came right after that meeting when my mother leaned over and said, “Her mascara was running.” When one of the top-rated oncologists on the west coast is worried about you, that’s when you know you’re neck-deep in it. The only other survivor I’ve met with a similar story is my leukemia friend, Sarah, who thought she had a really bad case of influenza and was told, after going to the ER, that she needed to be admitted for treatment immediately.
That was almost exactly two years ago (my diagnosis didn’t come until a week after neurosurgery, when the pathology report came back)(literally up until that point, even my surgeons thought this was just an aggressive grade 3 astrocytoma). And right now, physically I feel fine. Just like I did before tumors #1, 2, and 3. My life has now become my favorite Dilbert strip:
DOGBERT: Have you heard about the Idaho Death Flu that’s going around? You feel fine one minute, then, bam, you die.
DILBERT: Hey, I feel fine right now!
DOGBERT: My work here is done.
Historically, glioblastoma has a near-100% recurrence rate (the number of cancer survivors who have only ever had one incidence of cancer I’ve met is… well, I can probably count them on one hand), which brings me to my last, best hope (“A fool’s hope,” to quote Lord of the Rings), that this last tumor is the third one (cancer is defined by its ability to metastasize to distal parts of the body)(usually the brain, ironically)(so, in the most technical sense, brain tumor patients never really get cancer, because it can’t metastasize outside of the central nervous system), and I’ve met plenty of survivors who had three or four cancers and limped along just fine. The other aspect here is that I did get treated with an experimental chemo drug that, according to scuttlebutt on the cancer web, is far more effective than originally predicted, and there are only 200-ish survivors who completed treatment with this drug (my estimate is based on the statistically fool-proof method of looking up my trial in the FDA database, noting it was a “Phase 1C trial” with 72 participants, assuming the “C” part indicated three similar trials were in progress and had a similar number of participants).
Am I scared? Oh, yeah. Do I have any concrete evidence upon which to base that fear? Absolutely not. Just like the previous three tumors. And right now, any hope I have is largely based on conjecture, speculation, and rumors (on the other hand, new GBM treatments are being developed at a hyper-accelerated rate, which is good, but most of them are still a while from market — certainly, not soon enough to swoop in if I get bad news on Tuesday).
All of which, I guess, is my way of griping to the world that life is hard, it’s notably harder if you’re a cancer survivor, and it’s utter misery in the run-up to The Next Scan. If you’ll excuse me, I’ll be with my valium salt-lick and watching the ongoing Trump Decline.
