Patrick’s Story

10/01/2020 By Patrick Koske-McBride

You’d be amazed at what you can endure. I learned that in March, 2002; when I rolled my car at age 17. Most ERs require scan any time there’s a chance of significant head/brain trauma, and doing a barrel-roll in an SUV counts. Unfortunately, my scan showed a tumor in my frontal lobes. Fortunately, all that benign tumor (it was a grade I neurocytoma) required was neurosurgery; unfortunately, it left me with tremendous memory problems that took almost 10 years to recover from, with the help from a local mad scientist researching neurological recovery and neurofeedback (a specialized form of biofeedback). Despite extreme, below-normal electrical activity in my right frontal lobe, I managed to get a BS and an MS (not with impressive grades, I’ll admit, but, hey, I had severe, clinically-detectible brain damage).

Unfortunately, at age 28, my neurooncologist detected another tumor in my right somatosensory lobe. Again, that was just a benign tumor (a grade II astrocytoma), and, fortunately, a simple neurosurgery was enough to get rid of it. And, more fortunately, all the side-effects of that treatment were physical. I know that sounds absurd, but after years of not being able to recall obscure biochemical pathways or cellular components, and being held back educationally by that, a little vertigo and wobbliness seemed like a relatively minor inconvenience. In the year it took to recover from that, I got a part-time job as a researcher for a biotech investment consultant to research the economic and scientific feasibility of developing vaccines for brain cancer (you can probably see where this is headed). It’s horrible to think that pharmaceutical companies could put a price on human life, but it’s far, far more horrifying to learn there are some diseases that are so rare, there aren’t enough patients to run FDA safety tests on.

Last year, my oncologist spotted another little blob on my MRI in the area of Tumor #2, and told me I’d be a candidate for a vaccine trial instead of traditional (and usually ineffective) treatments if I was willing to postpone surgery for a month or two. However, in just that time, that little blob grew unexpectedly and dramatically into glioblastoma. Terminal brain cancer. The surgical team did a superb job of scraping it out before there was any noticeable metastasis. I lost all sensation on the left side of my body for a week as a result of their aggressive mental flossing, but it probably added to my long-term odds. And, since I last professionally did any research on the subject, science got busy trying to figure out how to prolong and improve GBM patients’ lives. That includes the experimental chemo clinical trial I’m currently in – and will be for another six months. If that keeps the disease at bay, I’ll sign up for a ten-year subscription.

And then, a quarter of the way into my maintenance chemo year, after the surgery and radiation, three months without metastasis or recurrence, something in me just kind of snapped. I stopped worrying about the future, or my own inevitable demise. I just wanted to beat this one damned glioma solidly before exiting the ring. Which means lots and lots of time in the gym, and eating a viciously boring diet. Cancer treatments are still extremely dangerous (radiation and chemo are designed to take you apart on a molecular level – that’s not an exaggeration), and one of the major determining factors in GBM patient life expectancy is when side effects and associated damage is greater than the risk of cancer. Retaining that last bit of crucial agency – being able to demand more treatment, and more aggressive treatment – is now one of my life goals.

Six months cancer-free as of August 2016, although I won’t be out of chemo until next February, but I intend to be there.

GRYT is struggling with a disease (in different forms) for 16 years

GRYT is learning to read again at age 17 – and still graduating college just a few years later.

GRYT is learning to walk again at age 33.

GRYT is when you realize your survival is important to people you’ve never personally met.

GRYT is realizing that the only measure of success in life is the ability approach your own mortality strong, confident, and unafraid.

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