Ask a Survivor 1

From the Gryt app writing prompt,

How has your personality changed after cancer?

It’s a fair question. Everyone wants to know what the “new normal” will look like, post-cancer; but that ignores the inconvenient fact I’ve encountered, there is no “after cancer.” Once you get that diagnosis, you wear that big scarlet “C” on your chest for life, and you can’t escape it. You’re only in or out of treatment, you’re never cancer-free; horrible as that may seem.

Life after treatment is hard. It’s especially hard for me, because I got my first neurosurgery when I was 17. My entire adult life (such as it is) has been with cancer. And that first surgery took 20 IQ points off the top (not that I’d consider myself dumb, or trust an IQ test as the final arbiter of intellect, but any decrease in intelligence at the starting line has some dramatic effects on the outcome). I did get a lot funnier, as a result; humor has always been a safety valve for me, and that got turbocharged when confronted with my own mortality. The great travel/adventure writer Tim Cahill once wrote, “The worse the trip, the better the story. Ergo, there are no bad trips.” When I came to after a week under the influence of heavy-duty, pharmaceutical-grade narcotics (this was before the opiate crisis but post-DARE, when we weren’t terrified of drugs or addiction), it was to a nurse at the foot of my bed, holding my foot in one hand, and a needle in the other. She noticed me, and, displaying the sort of bedside manner that would probably get her flogged nowadays, said, “I just need some blood, go back to sleep.” I do not know what the Nazis told their victims as they herded them into the Zyklon B chambers, but I feel very safe in assuming it was more-soothing than that sentence. That is the line you use when you never, ever want someone to go to sleep. If you’ve ever walked on glass, you can probably relate to the next ten minutes of my life. Horrible as it was, there was an odd, shrill voice in the back of my head saying, “This sucks, but the story you can tell will be amazing.” That was probably the start of my saber-toothed wit, even though my memory took a nosedive (and my scholastic ambitions with it).

Brain tumor survivors get screwed over in a myriad of ways, but, among them, is that we’re not usually considered cancer survivors by most of the medical establishment (this is based on a technicality; cancer traditionally has to be able to metastasize to distant sites of the body; because your brain and spinal cord are locked into a different anatomical and biochemical system, brain tumors can’t really metastasize to your liver or lungs). If my physicians had started using the terminology they used when I actually got brain cancer (we’ll get there in a minute), it would’ve changed my thinking about both my disease and my life, both of which would probably look rather different now as a result.

When I finally-albeit-inevitably did develop what the pathology board agreed was brain cancer (with an intervening tumor after the first one), I went to pieces, as you would expect. When you survive the worst-case scenario at age 17, it leaves you dramatically under-prepared for when you experience the real worst-case scenario. Far worse than death, it seemed, were the horrific side-effects of treatment I’d been hearing about from other survivors for years. That it fried their mental abilities (mine weren’t in great shape to begin with, as a spelunking expedition through the frontal lobes tends not to foster intellectual capabilities)(and our society is obsessed exclusively with the sort of intelligence that can be measured on a multiple-choice exam). It changed their personalities. It left them a shadow of their former selves. They wished they hadn’t survived.

So, let’s dispense with a few things right now: If you are diagnosed with cancer — even if it’s terminal — if you forego treatment or go with acupuncture and leeches instead of medically-recommended stuff — it’s not like you’ll get 6–24 months of health and then drop dead. Life will get progressively worse, until medical intervention won’t make a difference, and, when that happens, you want to be in a state with Death with Dignity laws, because the end will make anything in Dante’s Inferno look like a tea party. Treatment may or may not work, but you want to seize the Puncher’s Chance and demand the harshest, most-effective treatment you can. If you have a disease traditionally considered terminal or incurable (and, remember, all diseases are terminal, right up until people start surviving them; you want to be amongst those pioneers), I’d recommend not bothering with Standard of Care, and just going directly to experimental options (I was extraordinarily lucky in that my physicians understood my mind-set from Day 1, and immediately got me into a chemo clinical trial). Secondly, most of the classic “chemo brain” are — based on my experience — largely based on fatigue and exhaustion. In the last 18 months, I’ve had a neurosurgery, followed by 4 weeks “off,” followed by 6 weeks of chemoradiation where I got daily radiation and chemo (and once-a-week infusions), followed by a few weeks off, followed by Standard of Care chemo (5 nights a month on Temodar) and experimental chemo (three infusions a month — that’s more than most lymphoma patients, I think), for a full year. It’s tiring just to write that sentence. It’s near-fatally exhausting to live it. Another aspect here is Cartesian Duality, which is bullshit. Even though you wouldn’t look to NFL linebackers for book club ideas, and you wouldn’t walk into a Mensa meeting looking for bodybuilders, the body is the home of the mind. You keep your body in decent shape throughout, and your mind will suffer less than you might fear.

Another factor to keep in mind is, even if you’re untouched by brain cancer, survival is a traumatic, arduous process. The mere act of enduring what most people would consider unendurable is going to change your personality. I had to get much more assertive and aggressive, especially when dealing with the bureaucracy of the medical-industrial complex. Pro-tip: screaming in public, while not exactly a great PR move, will usually speed things up (fortunately, I never had to do that, all of my screaming was done via phone)(almost as effective). And, once you find that sort of will-power within yourself, you see yourself differently. Not as a dead man walking, but as an irresistible force just waiting to be unleashed in the right direction. Once you make that leap, there is no going back.

Of course, there’s the downside that recovery is lengthy and exhausting in itself, so, if you’ll excuse me, I have to take a nap.