Congress decided to make July 17 GBM Awareness Day. Fantastic. All it took was John McCain, Beau Biden, and a lot of other people. Far too many, really. Look up Wikipedia’s list of people killed by GBM, it’s astonishing. I’m aware that, because many cancers (lung cancer immediately springs to mind) tend to metastasize to the brain, and “Death by cancer” isn’t specific enough to put on a death certificate, GBM sort of serves as a broad catch-all for most people killed by other cancers.

It’s a common complaint amongst survivors that practitioners throw around terms like “lucky” when there’s nothing lucky about it (or, to quote Sir Terry Pratchett, “When someone is saved from certain death by a strange concatenation of circumstances they say that’s a miracle. But of course if someone is killed by a freak chain of events — the oil spilled just there, the safety fence broken just there — that must also be a miracle. Just because it’s not nice doesn’t mean it’s not miraculous.”). Having a minimal amount of clinical training, I’m aware that, statistically, there are certain diagnoses that are better than others, certain treatments that are better than others (speaking of luck, I got into a very promising chemo trial that seems to be much more effective than was originally advertised, but that’s an entire novel unto itself).

Then people start dying. People with your diagnosis. In the last year, three people — one of whom I knew personally — in my circle of acquaintances died from this disease, another has recently taken a turn for the worse. When you’re the last man standing, you have to conclude, there is a horrible truth behind the concept of “lucky cancer.” It’s like being forty minutes late to your job in the World Trade Center on September 11th. You’re definitely grateful you hit the snooze alarm that third time, but, surrounded by the flaming wreckage of your career, friends, and colleagues, it definitely doesn’t feel lucky. It feels like, “There, but for the grace of God, go I.” And it feels like God is double-checking the Rolodex of smitings.

Which brings us to you, you lucky, currently-healthy person. I’ve tried to make it clear in my blog writings that your time in the hot seat is fast-approaching. The NIH currently cites the odds of getting cancer as about one-in-three. That’s twice as bad as the odds you’d get playing Russian Roulette, and, even though you’re probably not spending most of your Friday nights with a pistol to your head, you are, figuratively, playing those odds almost every day you’re alive. As my immunology and cancer biology professor in grad school pointed out, “Cancer is an unfortunate, inevitable by-product of the way our immune systems and genetics are designed.”

The problem of incurable, invisible, lethal chronic diseases is somewhat compounded by the Baby Boomers’ obsession with classic societal problems — addiction, crime, and poverty. All of these are bite-sized, pre-cooked phobias are designed to distract from the unfortunate fact that, if you can readily comprehend a problem, you can immediately work to solve it. Part of what makes life with cancer so frightening — what makes survivors the last, great philosophical “other” — is that almost all of the experience, from Day 1 to lingering scanxiety — is incomprehensible until you’ve been through it. And, in the initial weeks, the goblins just keep marching out of the basement; there is a new panic every hour of every day. I often wonder how many of us make a fatal decision or mistake in those first hours of crushing fear. In my particular case, a million little things had to go right, and one of those was that I got a wonderfully tolerant medical team who were able to “talk me off the ledge” before things spiraled out of control. Whenever I asked what I should do if the treatment didn’t work (that was a frequently-asked question), they’d usually respond, “We’ll try another treatment course.” I’ve since learned that not everyone’s oncologists are that patient or tenacious from the start. I’ve also learned that not all patients get put on the hyper-aggressive treatment plan I was on. Again, I hit the “Snooze” button one magical time too many and avoided death via fiery inferno. But our society doesn’t really allow for concepts like “random chance” when we can blame our (or other’s) fortunes on things like “hard work,” or, “I earned it.” I have to ask, what did I do to “earn” an extra corporal term, when hordes of other, probably-worthier, people have died from the same disease?

One of the weirder aspects of survival is that, all your life, you never get credit for things you don’t do. No one high-fives you for not murdering your colleagues and family, you don’t really see any benefit to being a decent human being (meanwhile, we see a disproportionate number of people with sociopathic tendencies — somewhere in the range of 30–40% according to journalist Jon Ronson in The Psychopath Test — in leadership positions in the corporate world and government). That really kicks into overdrive when you’re in treatment — your boss won’t extend sick leave/vacation, despite putting in ten years without being late; your landlord and creditors won’t give you an extra month grace period. Then, after you’ve “won” (you don’t really “win” with a chronic, terminal disease, but we’ll get there later), people show up to high five you for surviving, or being brave. “I’m not brave,” most of us usually say, “I just didn’t die.” Then you get to deal with a whole host of issues/body horror when you realize your own genes betrayed you and tried to kill you (that’s another story for another time).

If society isn’t set up for cancer survivors, it’s most definitely not set up for trauma survivors, in general, because we usually come back angry at the system. And, to tie this thought together with the concept of getting credit (or not getting it) for things not said or not done; I have to bring the medical profession into it. A lot of GBM patients can’t even get care; let alone decent, well-qualified care, thanks to a host of insurance issues (which the GOP is working over-time to increase). I get that the issue of non-maleficence (first, do no harm) vs beneficence (doing good) is at the heart of medical ethics, and, when in doubt, the former wins. This was initially instituted in the wake of World War 2 and the revelations of the Tuskegee Airmen, when it was realized that the rationale of “for the greater good” could be used to do some really evil stuff. And it worked, mostly, for a while. Now, from a patient perspective, that ethic has swung back and become an excuse for inaction in the face of a plague. And, in terms of survival statistics, that analogy is extremely apt. According to Ahmad Tamimi, less than 5% of GBM patients survive five years post-diagnosis (for everyone worried about their friend with brain cancer, it’s not like every single person drops dead at five years; they just stop tracking us at that point). According to historian Ole Benedictow, the death rate of the 14th century outbreak of bubonic plague had a death rate of 60%. You would be more likely to survive the plague with 14th century medicine than the most aggressive form of brain cancer with the full support of the modern medical-industrial complex.

On September 11, 2001; 2997 people died, according to CNN. That was enough for America to declare war twice, pump up an already-bloated defense budget, and shred what little stability was left in the Middle East and post-Soviet central Asia. We can discuss the politics and morality another time, but the point is, it took 3000 American lives to spur us into dramatic action. According to Bristol-Myers Squibb, 27000 people in North America will be diagnosed with GBM per year. Admittedly, a solid chunk of that population includes Canadians, Mexicans, and various Caribbean nations our country doesn’t really care about, but even taking the ridiculously low-ball estimated occurrence rate of two per 100000 (given how stigmatized both cancer and neurological diseases are, and how GBM is the horrible overlap of both, I strongly suspect there’s a lot of under-reporting), 7000 Americans will be diagnosed with it this year. 6650 of us will be dead within 5 years. Imagine two 9/11s. That’s the death toll from a single year of diagnoses (and, if my estimates are correct — and these are the estimates the biopharma industry uses to make investment decisions — the rate is going up). Admittedly, this disease tends to occur more frequently in the elderly, but that should just spur the people in charge of research funding (I’m going to go out on a limb and guess they’re mostly old white men)(GBM is also more prevalent in men, just FYI) to pour more into it. Twice the casualty numbers of 9/11. Just one 9/11 was worth us throwing our national budget at it.

I’m always incredulous when people talk about universal health insurance or increased research funding as some sort of dreamy, whiny liberal ideal, when it costs tax payers a million dollars a head to train a spec-ops soldier (admittedly, my source on that is “Generation Kill,” so it’s hardly a solid estimate, but we know we pay $775 a head to keep undocumented immigrant kids in concentration camps), and we have only decisively won one war since WWII (and that was Desert Storm). That’s hardly a solid investment for anyone who doesn’t own stock in Raytheon. Meanwhile, again, over 6000 Americans will die this year from a disease that is eminently cureable. Allow me to explain the logic behind that statement; prior to 1995, most researchers and physicians weren’t terribly interested in GBM, and usually sent us off to quietly die (inaction in the face of a tragedy is not “doing not harm,” it’s “actively siding with the tragedy”). In that year, Benjamin Williams was one of the first GBM patients to convince the medical establishment to treat him. In the world of brain cancer, he’s Patient Zero. Since then, three new treatments have been developed; admittedly, none of them have definitively cured it, but in the context of an orphaned disease — abandoned, really — that was only the pet project of a few researchers and philanthropists, in 25 years, with virtually no budget, three new treatments? That’s not an unstoppable juggernaut of cancer; that’s an easily-treated disease that has just been criminally neglected by researchers and doctors.

So, this Glioblastoma Awareness Day (you are now aware; kudos); I think I speak for all GBM patients when I say we want better, more-definitive treatment. And this isn’t some sort of outlandish wish; again, we’ve increased life expectancy from three months (untreated, so, prior to 1995) to 14 months. As an able-bodied person, you might, as I was initially inclined to, write that off, but, once your neurooncologist asks you if you want a glass of water, you want those extra months. As a matter of simple math, that’s an increased life expectancy of 4.67 times. If we could do that with your life expectancy, you’d live over 300 years. In the geological span, that’s nothing, but you’d still probably want that time. Imagine a disease that sees a five-fold increase in life expectancy with virtually no acknowledgement from the medical world, and you can appreciate how “beatable” this thing is. So, yeah, I’m figuratively standing in front of you, like Oliver Twist, begging for just a little more gruel. Or just a little more research funding into this thing. Before 6000 more Americans (and many, many others) die. Before it’s you or your children in the infusion center. As gun violence victims have shown, thoughts and prayers do very little to solve anything, so we’d appreciate you actually calling or sending an e-mail to your congressman or senator (or even state assemblyman). It’s easier than lighting a candle in the Vatican (I’ve had three friends do that for me)(of course, I’ve also had three different brain tumors, so maybe I should stop trying to get the Almighty’s attention). If you are in a position to do more, and feel inclined to do so, check out the Al Musella Foundation, or Our Brain Bank.

Please.

Written by

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

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