Hope with Cancer

With regards to Harvey Milk, who once said, “I know that you can live on hope, alone, but without it, life is not worth living.” He nailed that, but cancer survivors are robbed of so much else in our lives, hope is the one thing we cling to, like a limpet. I should point out that I’m not of the “Cancer is a gift” school of thought — it’s a curse that ends and limits lives, and any sane, benevolent deity would’ve sent it the way of Great White (the band, not David Duke or the shark). But, survivors are stuck with this disease, so we don’t really have a choice. We genuinely must believe that this treatment will work, that this treatment won’t be as brutal as the last one, that this will buy us more time. You have to hope, or you risk giving in to despair. One thing that actually gives me great hope is that, despite insurmountable odds, we’re still here. Those same terrifying odds frequently scare the hell out of the newly-diagnosed. Americans are the first to moan about how terrible we are at arithmetic, but we race to scientific sources to tell us how much time we have left, and just how royally screwed we are. Weirdly enough, those exact same statistics give me a faint, dry sense of hope. Buckle up, people, it’s going to be a bumpy ride.

My stance — and this will probably be on my tombstone — is that cancer statistics are not only fundamentally misleading, but the way they’re gathered and presented is, in itself, a series of lies by omission. Cancer statistics, as they are, are the unfortunate intersection between biology and culture in their laziness. All creatures are wired to prefer laziness to activity. We live in a world characterized by scarcity, and creatures that run marathons without a caloric reward died. Put another way, the wolves that took a postprandial nap after bringing down a moose were better-able to make that one meal last than the wolves that took a victory lap. The other factor is that the concept of Divine Right is thoroughly baked into every aspect of our culture. I’ll admit that no one out there is arguing that Queen Elizabeth is Queen of England, and the Commonwealth Realms because Jebus said so, but what about billionaires? We don’t like to go picking apart their background, education, generational wealth, and family connections that gave them opportunities not available to 99.9999% of us, so we just say they worked hard, because that’s easier than living with the knowledge that we live in a fundamentally unjust society that artificially chooses winners and losers based on which zip code you grew up in, and we could dismantle that system tomorrow if we put some real time and effort into the endeavour. Similarly, it’s easy to write off peoples’ misfortune as, “They won the worst lottery in the world.” This allows us to rest easier than the gnawing knowledge that, if we’d failed shop class in seventh grade, we would be that homeless guy on the corner. It’s an easier, more-comforting illusion to believe cancer survivors are randomly chosen by spiteful furies than to understand that the same errors present in our genes are there, in yours, just waiting for an errant UV ray or rogue electron to cause catastrophe. Very few people have the sort of macabre bent that I do, to go through the black box data of a human life, and add context to the generally useless cancer statistics, which also informs me as to the biggest dangers, risks, and challenges of cancer survival, and how to avoid those issues. But that’s just me.

The first thing you ask after a cancer diagnosis, is “Will I lose my hair?” The second thing you’ll ask is for a prognosis. This is also a great way to differentiate the quality of your medical team. The better ones will ignore you unless you press them, then they’ll discuss the outdated nature of statistics, the medical advancements, but, if they had to hazard a guess at gun-point, people with your genotype might live two years to two decades. They’ll probably warn you away from the Internet, in a scripted dialogue written by the people who are clearly unfamiliar with how human brains work. And then you will hop down the Google Hole for endless nightmares. One of my friends is a lymphoma survivor, and she finds my fascination with statistics fascinating unto itself. I should point out that it’s not the raw numbers that interest me; it’s the stories they tell — or fail to tell, that make me hopeful.

Let’s discuss the biggest factor that nobody ever accounts for: missing data. If you’ve ever seen what a “0” on a mid-term or an “Incomplete” mark can do to your GPA, you know that no grade is far worse than a terrible grade. Similarly, even though cancer was first described by Hippocrates (sort of; it’s not like the ancient world had great record keeping, and a number of sources suggest he inherited a lot of data from the Egyptians, who definitely mummified sarcoma patients), the historic conditions of humanity more or less kept this disease from both developing, or being accurately diagnosed and recorded. Even though I have no doubt that adolescent and young adult survivors like me have always been around; cancer is primarily a disease of the elderly (if you want the exact physiological details of why that is, let me know), and, until very recently in our history, humans didn’t live long enough to get it. Previously, I have no doubt that cancer patients who died were written off as victims of plague, famine, witchcraft, or war — any attempts at historic data would be like looking for heart disease in the middle of a multi car pile-up. Best of luck with that.

And, while record keeping and medicine have improved dramatically, it’s not as if we hit the 19th century and we got PET scans, the WHO, and all the modern bodies so critical to cancer statistics. Hell, I have no doubt that a few Constitutional Framers died of cancer, but everyone assumed it was some rare case of super-syphilis (lookin’ at you, Franklin). I operate under the assumption that incompetence, bad records, and lies of omission are still at the heart of most statistics to this day. How can I be so certain of that? Every single time I meet a new oncologist (if you’re a career-making case study, every oncologist in the time zone will want a word), I deal with the question, “What do you think caused your cancer,” which I always want to respond to with, “Well, you have the MD, what do YOU think caused my cancer?” Asking cancer patients what caused our cancer assumes a vast knowledge of oncology that isn’t present, and undoubtedly skews the statistics. What if I just started telling everyone I snorted rubber bands on a daily basis prior to my diagnosis? Would anyone actually believe me, or would someone call me on that blatant lie? What would that do to shape the narrative around cancer?

Here’s where simply putting some statistics together starts productively shaping the decision-making process, in regards to my own diagnosis. The average glioblastoma patient is 69 and a half years hold. The global average life expectancy is about 73 years. So, off the bat, the odds that someone of average GBM age has another five years in them is a faulty premise to operate under. I’m not trying to victim blame; just noting that “My great grandfather lived to 95 and died in his sleep” is a fundamentally different narrative than, “Even though he was mostly-healthy, my great grandfather had a few minor heart conditions that he never discussed or sought treatment for, and one morning, he woke up dead.” It just adds a little context, and, with that, you know you should watch your blood pressure and heart health as a health strategy.

Whenever I start mentally going over various statistics and survival stories; yeah, there is a certain desperation if one just accepts the statistics as Gospel without further questioning, or context. Once you start adding that context, the narrative immediately shifts away from, “This is a deadly, unstoppable force of nature; I’m so sorry God chose you for punishment, I’m so glad this will never, ever be my problem,” to, “We have criminally underfunded research and education on this disease, and everyone will pay a price for that.” Consider, if you will, that modern cancer treatments were initially developed in the 40’s and 50’s. That’s not just “relatively recently,” that’s, “Within my uncle’s own lifetime.” It is perilously recent.

My own disease, glioblastoma, was initially discovered in the 19th century, but has only been aggressively and systematically treated since the early 90’s. That’s within my own lifetime. Even if we want to completely stack the deck and claim that science started treating GBM in 1980, that’s just 42 years. In that time, the life expectancy went from “months, possibly weeks” to an overall life expectancy of 8–24 months (and beyond, in some cases). Taking the high-low of, let’s say six months in 1990 and eight months in 2022, that’s a one-third increase in life expectancy. If the general population saw a spike like that in life expectancy, global life expectancy would be 114 years old. As a percentage, that’s massive.

If that doesn’t give you hope, here are some other contextual points that should. In 1993, basketball coach Jim Valvano was diagnosed with cancer. In his famous speech at the ESPYs, he mentioned that cancer research received just 10% of funds compared to HIV/AIDS. Ten percent. Admittedly, Mr. Valvano was not a scientist or researcher, but, if there’s one group I think can be trusted to memorize and regurgitate statistics accurately, on demand; it’s coaches. The popular narrative of all cancers, and especially brain cancer is that it’s like Godzilla — it climbs out of the Pacific every so often to decimate Tokyo, as the horrified Japanese citizenry helplessly looks on, and guns, tanks, and jets won’t stop the destruction, WHAT CAN ANYONE DO, WE’RE ALL COLLECTIVELY POWERLESS AGAINST THIS MONSTROSITY… No, the true story of cancer is that this is a case of some desperately poor black high school kids who accidentally discover an abandoned bag of Lacrosse equipment, form a team, and, despite teachers and coaches constantly tellling them to give up, make it all the way to the state finals in two months before finishing third. Americans inevitably go straight to the conclusion, “But they didn’t win,” which is both accurate, but completely misses the point. The game was rigged against them before those students ever found that bag. Nobody wanted them in that game, nobody wanted them in the league, they played at a level that surpassed a rigged system. The better conclusion is, “Wow. I never knew Lacrosse prodigies were a thing. Someone track that team down, send them a real coach and equipment, and keep a close eye on them.”

Similarly, the brain cancer community weren’t supposed to live this long, nobody particularly seems to want us to do well, but, on a shoestring budget and virtually no real government support, we’ve gone from physicians flatly refusing to treat us (a fate I fear if the bodily autonomy protected by Roe v Wade is rolled back), to an overall 8–14 month life expectancy, four different treatments, and, in one memorable moment, a grizzled brain tumor survivor flatly telling me, “If you play this thing really well, you could have decades left.” Imagine if someone with real power gave half a damn. Imagine if our politicians decided that, instead of spending 20 years and two trillion dollars to make Aghanistan safer for the Taliban, they demanded that medical research initiatives receive a comparable amount of funding as “hypersonic weapons” (whatever those are). Imagine if there was an eminently solvable catastrophe happening in your neighborhood, and you, personally, could actually do something about it.