Inasmuch as a heavily-stigmatized, isolated, vulnerable minority group can communicate with each other, as a long-term glioblastoma survivor (25 months!)(the average maximum life expectancy is 24 months), I’m frequently contacted by the newly-diagnosed asking me how I “beat” it. I usually try to manage expectations and heavily qualify my experiences (I prefer another survivor’s idiom, “the cancer is dormant”), but, reading between the lines, there are some common urban legends about cancer (in particular, brain cancer) that need to be addressed.
The first, biggest one, is the insinuation that there’s some sort of hidden, magic herb in the Andes that only a remote lost tribe knows of, that somehow cures cancer. That’s the heart of it, although it comes in a variety of forms — Ben William’s “chemo cocktail,” “big pharma has hidden a cure” (and, yet, biotech executives are still dying of cancer), “repurposed anti-malarial drugs cured cancer” (you think I’m joking; Google “mebendazole”). Like all persistent urban legends, there’s a kernel of truth to this one that keeps it going — oncologists do use off-label drugs to treat seemingly unrelated cancers (the experimental drug I was treated with was originally designed as a multiple myeloma drug), and, yeah, if treatment seems to be sort-of working to keep the disease from progressing, but your tumors aren’t shrinking, you might wind up taking multiple chemo drugs to manage the disease — but this needs to be seen more in the light of someone with a chronic thyroid condition, or HIV, or diabetes taking multiple drugs and/or courses of treatment to manage the condition. It’s not a guaranteed cure, nor is it meant to be; it’s meant to buy the patient time until the next big breakthrough is made (that might seem disheartening, but, remember, when science first discovered HIV, the average life expectancy was measured in months; now, it’s decades). When you hear the words “Stage 4,” your goal shouldn’t be finding some sort of hidden, miracle cure (just ask any of us who are long-term survivors, we’re pretty open about what treatments we used, and how we feel about them), it should be to live long enough to see that next new treatment. I realize that’s not terribly encouraging, but scratching out just a few more years is surprisingly doable (I realize it may not be doable for every single cancer patient, but if I have to qualify and specify every bit of advice I give, this essay will outpace J. Clavell’s Shogun). Your ideal goal is just four years. That is the half-life of all medical knowledge. You make it that long, not only will there more (and probably better) treatments, medicine will know a lot more about your disease — even if it’s exquisitely rare.
Speaking of rarities and cancer survival, I have two main support groups: the youth support group (modeled closely on Stupid Cancer and other AYA groups), and a standard, general cancer support group. The next-oldest person in that latter group, after me, is 40; and we’re both half the age of the average survivor in that group. I bring this up, particularly in reference to age, because, when the older folks hear about cases of rhabdomyosarcoma or Ewing’s Sarcoma, there is much gnashing of teeth and wailing about the injustice built into the fabric of the universe. You don’t see anything like that amongst the AYA groups, because it’s happened to us, by definition. The fundamental difference between these two groups — as it applies to other survivors — apart from age is, most elderly survivors have had a lifetime of reinforcing cause-and-effect thinking. This is just part of the wiring of the human brain — any time something happens, we look for a cause. Or we link what we do to an effect. 99% of the time, this is a good, desirable trait — it’s what keeps you from burning your fingers on the stove after you do it once or twice. It’s what prevents you from acting on impulses, and it’s generally a good thing. The only problem with that sort of thinking is that it doesn’t adequately prepare you for the concept of completely random chance (to the point where we had to develop the philosophical concept of “divine right” rather than, “that schmuck won the game of womb roulette”). In the same vein as, “Where is the top-secret cancer cure,” the next-most common issue I see coming from survivors is, “Why me?”
That question is completely irrelevant to your survival, unless you’re a three-pack-a-day smoker or bathing in toxic waste. If the causes of cancer were obvious and immediate, no one would get cancer. Instead, look at it as winning the lottery — the worst lottery imaginable, but it still works. In your zip code there’s probably one or two mega millions winners, and no one’s scratching their head trying to figure that one out. They simply got lucky. I hate to admit it, but that’s a large factor in my survival — I was in the right place, at the right time, with the right diagnosis, to get into a clinical trial. To be fair, you can hedge your bet and look into clinical trials that are recruiting using the FDA’s search engine. Apart from Google-fu, the only “skill” aspect of cancer treatment — which still involves a lot of luck — is surviving the treatment longer than the cancer. To that end, I have some pretty solid advice across the board. Get more exercise. Eat more fiber (that’ll help with some of the less-well-known side-effects of cancer treatments). Drink more water (that’ll also help with chemo). Cut back on sugar. Get more sleep than you think you need.
And, weirdly enough, enjoy it. I realize that sounds strange, and it’s hard to contemplate a future in which you aren’t there, but, at the same time, there may be no long-term consequences of your actions. Get that tattoo. Write that book. Slash your boss’s tires. Wear a tux to your infusions (I’ve heard of survivors who go to infusions in formal evening wear, which only seems crazy until you’re in the hot seat — treatment’s hard, and you do have to do something to psych yourself up). An important aspect of survival that often gets overlooked is getting the motivation to get out of bed and get poisoned and nuked — even if it’s something as trivial as just knowing your survival can improve the statistics. Despite the title of this essay, I don’t believe in the “Law of Attraction” (the pseudo-philosophical idea, not the concept of romantic love), but this is one of those weird little areas of life where belief does become fact through repetition (that and national politics). Survivors need to know this going in, because, far too often, we start from a very dark place, emotionally and physically, and things do not get better. Not for a while, at least. Naturally, this inclines people not to continue treatment or cultivate multiple medical opinions in the (likely) event that treatment doesn’t work or doesn’t go directly as planned. Again, there’s a horrible amount of luck involved in cancer survival, but the trick is to keep on keeping on despite any setbacks, and remain adaptable. And realize that things are going to get worse, one way or the other; the unanswered question is whether that’s how your story ends, or if it’s just chapter (okay, so many chapters, in my case) in a longer story.
That is the secret.