I saw this on one of the message boards on a brain cancer group I help moderate, from the spouse of a glioblastoma survivor:
GBM doesn’t give us a fight that can be won. It’s a devastating prognosis. Just know there is nothing any of us can do or not do that would keep them alive.
As someone who is now at 25+ months, it’s a little horrifying seeing that sentiment coming from a caregiver.
When you’re interacting with other people — of any age — you never know what will be a “teachable moment,” or what will stick with people. And it’s not always 100% one way or the other, which is the sort of binary thinking that kills cancer survivors (and LGBTQ folk, but that’s another discussion for another time). Back in the 14th century, when I was in middle school, I took chess as an elective. For calculating winners in officiated chess tournaments, a “win” is entered as “1,” a “loss” is entered as “0,” you add them all up to determine the winner (I might be oversimplifying that — it’s been a long time). Simple enough, right? Except there’s a third option. “Draws” and “stalemates” (a situation in chess which is just as specific as a checkmate — it’s when neither player can win and/or make a legal move — it’s almost as hard to achieve as a checkmate, although I’ve done both before) count as “0.5.” My chess teacher (also my math teacher) pointed out that, if you can not win, or have abandoned that goal, you shouldn’t forfeit — you should try to play to a draw or stalemate, because half a point is better than none at all.
Possibly the biggest advantage I have over other GBM survivors is that I never saw this disease as a win/lose proposition. I’m aware (I’ve pointed this out in other articles) that medical knowledge has a half-life of four years. My primary goal, from the first maintenance cycle was just to last that long. In other words, I didn’t frame it as “Well, I can’t win, I might as well quit;” I played for a stalemate. This is actually a thing in cancer survival; called “progression-free survival.” It means the disease still there, there’s probably evidence of it, but it isn’t gaining ground. BTW, despite the biopharmaceutical industry’s framing, there is no such thing as a curable cancer. The vast majority tend to come back, or metastasize, or… There’s a long list of potential sub-optimal outcomes that survivors get to see in full technicolor every night when we close our eyes. “Curable cancer” or “definitive treatment” are concepts that need to go to the rubbish bin of history, along with physiognomy and phrenology, and racial theories — and for the same reason; they’re inaccurate. Worse, it primes survivors to freeze when they hear those nigh-inevitable words, “recurrence.” I had my first brain tumor 17 years ago. Because the medical establishment used terms like “definitive treatment,” I was completely caught off-guard by Tumors #2 and 3. If, instead, the discussion was, “We can treat this tumor, we can keep you relatively healthy and halt the disease in its tracks, but you’re going to have to count on it coming back some other way,” I think I’d have bitten the bullet and gotten much more aggressive treatment much earlier. Of course, playing the “what if” game is not helpful; I’m just pointing out that we need to change survivor’s thinking from “cure” or “die.” We also need to make the general public acclimated to the concept that there are some diseases we can “cure,” but those costs — physical, psychological, and mental — may be so high that survivors might prefer death.
I realize that sounds dark and horrible, but we are discussing one of the most horrible set of diseases on the planet, it’s not like this is the fodder for a Walt Disney film.
I’m focusing particularly on this quote and mind-set, because projections of failure tend to be performative on Planet Cancer. Not that it’s all going to be cheery and work out if you have positive attitude, but my stubborn inability to psychologically abandon this meat-lump I’m trapped in at the first sign of trouble probably contributed immeasurably to my survival. Again, if you can not win, play to a stalemate. Statements like “curable” and “incurable” should always be avoided with cancer survivors not only because they give some people subconscious permission to withdraw or discontinue treatment, but because they invite the most harmful of all human assumptions: Tomorrow will be the same as today. When I was in high school, the civics/economics teacher thought it would be a̶ ̶f̶u̶n̶ ̶i̶n̶d̶o̶c̶t̶r̶i̶n̶a̶t̶i̶o̶n̶ ̶o̶f̶ ̶p̶r̶e̶d̶a̶t̶o̶r̶y̶ ̶c̶a̶p̶i̶t̶a̶l̶i̶s̶m̶ ̶a̶s̶ ̶t̶h̶e̶ ̶s̶o̶l̶e̶ ̶v̶i̶a̶b̶l̶e̶ ̶e̶c̶o̶n̶o̶m̶i̶c̶ ̶s̶y̶s̶t̶e̶m̶; I mean, an important educational experience. to invest nonexistent money in the stock-market (this was before we all realized that money is only a collective illusion we all agree to). This was 2003-ish, and, although the tech bubble was slowly decreasing, stocks were still doing well enough to make it seem like index funds and IRA investment accounts would be a valid thing. I often wonder what happened to the classes of 2007 and 2008; of if the economics teacher was smart enough to learn that teaching students that the future is inherently predictable and guaranteed is a really, really bad lesson to teach teenagers (for all the Boomers wondering why my generation is notably less consumerist than previous ones, it’s because we don’t have any money, and we got to witness the devastating results of unchecked greed and consumerism). Anyone, really. Does anyone with investments in the industrial sector think those investments really a good long-term bet in the wake of nearly-irrefutable proof that the planet is melting down (Australia and South America are on fire; this is the warmest decade in recorded history; it doesn’t matter what you think of G. Thunberg, if you simply open a window or contact a human being on any other continent, there’s a growing mountain of evidence that she’s right). Why don’t we all just give up now? Because, on some level, we are aware that, despite the comforting lies we tell ourselves, we are aware that the rules of the game do change.
If you have a currently-incurable disease, the critical adjective is “currently.” And do not give up. I understand that it’s far too easy to go down that rabbit-hole of, “What if this treatment doesn’t work? What if the cancer comes back worse? What if…” There were literally days when I just sat in front of my computer, hitting the “refresh” button on the FDA’s human trials website. Then something happened. A company called Tocagen announced immunotherapy trials for recurrent Glioblastoma. You have no idea how close to the edge you are until something as simple as a press release from an obscure biotech company can dramatically improve your week.
Then John McCain died of glioblastoma, while vocally calling for reforms and improvements. That was a major game changer; the week before he died, there were about 125 FDA-registered studies on GBM, the week after he died, 1200. That was the moment I started to seriously contemplate the concept of having a future. Not that anything is guaranteed; I’ve demonstrated that on multiple occasions. But that swings both ways; your demise, while inevitable, need not be next week, necessarily. In the meantime, you need to play it as if your skill, luck, and determination will determine if you get another week. “Winning” is not a realistic goal for any cancer survivor in the foreseeable future (the key word being, “foreseeable,” because, as I’ve established, our species has a miserable batting record at accurate projections), but you can play to a stalemate. It’s not winning, but it’s a far better option than losing.