So, on October 5, on computers everywhere, Gryt Health is hosting an online conference for cancer survivors, and invited everyone to make a five-minute video on their experience. Everyone who’s met me knows I can take five minutes just introducing myself; discussing my cancer struggle will probably take years. However, more to the point(s), here are the touchstones they want everyone to address. It would take at least ten minutes to hit them, but I might be able to generate a five-minute read.
Did you have cancer or someone you care about?
I have had cancer; I’ve had No Evidence of Disease since February 2018, but since I’ve had three different brain tumors over the last 17 years, this is probably just a break between tumors (also, since brain tumors/cancer can not metastasize outside of the central nervous system, and cancer is defined as an ability to metastasize to distant organs, technically brain cancer isn’t really cancer).
What type of cancer, stage etc.
First brain tumor was neurocytoma, stage I or II (I can’t remember), second one was a grade two astrocytoma, third one was initially thought to be a recurrence of Tumor #2, but turned out to be glioblastoma, which is technically stage IV brain cancer and considered incurable, and near-universally fatal — all the worst things you think about when you think of cancer. According to most statistics I’ve read, I should be dead in a month or two, but that doesn’t seem very likely at the moment (at my last scan in July, there was No Evidence of Disease).
How old were you at the time
I was 17, 28, and 32; I am now 34; at this point, I’ve lived longer with cancer and brain tumors (or the side-effects from them) than I’ve had healthy years.
Feelings you had hearing the news
Unbelievable, overpowering shock and terror — every single time; you’d think it gets a easier or at least less-shocking the third time you hear the words, “you have a brain tumor,” but it only seems to get worse. On my second diagnosis, I literally almost walked in front of a moving bus after being told — it wasn’t a suicide attempt or anything; I literally was so divorced from my senses I didn’t see or hear it coming. The most recent time, I literally have no real memory between hearing the words, “I’m so sorry, it’s Stage 4,” and kind of coming to a day or so later dry heaving into the toilet bowl.
Feelings you had/having through treatment
I’ve been treated — depending on the tumor, with neurosurgery alone (for Tumors 1 and 2), neurosurgery, radiation, chemo, and experimental chemo for Tumor #3, and it’s always some sort of exhausting, debilitating, horrible — it’s pretty much what you’d expect, as an able-bodied person, but, as you go through treatment — over a year for GBM — you do develop a sort of confidence as you go further without recurrence, as the possibility that treatment might be working seems to be working, as you get more and more familiar with what to expect and how to cope with it, and even though it gets psychologically easier, the physical symptoms do get worse. The physical symptoms were terrifying, especially because I was in the Phase I clinical trial — that’s just for establishing basic safety standards, and potential side effects. More specifically, I was part of the group establishing maximum safe dosages; it’s one thing to hear, “We think this unproven, experimental poison is your best bet,” it’s quite another to be told that you’re going to be given the maximum estimated dose just to see if you survive. Emotionally, I tended to waiver between “unrelenting horror” (as you’d expect) and “unparalleled joy” (there is no greater sentence in the English language than, “the scan looks good.”), sometimes in the same week (sometimes as a side-effect of treatment — Temodar can cause panic attacks). It’s that sort of emotional roller coaster that survivors aren’t told about, and the cancer support community needs to get a little better discussing.
Side effects you saw/had from treatment
I have memory issues, but my memory has actually improved since the first surgery due to neurofeedback therapy; I have some other neurocognitive issues with multitasking or multi-step sequential tasking, but I usually have to be in a very specific, stressful environment before those show up, I did have a “ministroke” or TIA as a result of radiation, I had a seizure due to drug side-effects.
I lost my hair in radiation in a weird strip that went from my right ear around the back of my head to my left ear — that’s all grown back (there is hope, kids). I have balance issues on my left side — when I got out of neurosurgery #3, I literally could not feel anything on that side at all. It’s getting better, but it definitely got fried a bit from chemo — the experimental chemo gave me unbelievable pain in my arm and shoulder — at the injection site, radiating up my body (my lasting contribution to science is that this drug will come with the warning, “May cause pain at infusion site”), and it also gave me hallucinations and really weird hyper-intense nightmares. Temodar made me exhausted, constipated, gave me really bad insomnia. and gave me bad “chemo brain,” although I don’t know whether that’s from the chemo itself or the fatigue or lack of sleep — that started getting better when I started using CBD. I also used edibles (specifically, CBD and THC/CBD Can-Tabs and RSO) during chemo (CBD only on infusions, because the infusions gave me vivid hallucinations and dreams, and my major complaint was pain and neuropathy)(which CBD helps a lot with). It’s worth noting that I was treated in a Phase I clinical trial, so I could grow an extra arm tomorrow, and it might be considered “normal.”
How have you been handling/coping (support group, family, resources)
I took up writing and photography; I wrote a blog about my experience; I’m a member of several support groups, and I had this really cool, unique thing where all these random people from my past — old friends from high school, former roommates, people I honestly hadn’t thought about for a decade; people I’d never even met but followed me on social media — came out of the woodwork to wish me well, buy me a beer, whatever — but it did give me this odd sensation — I’ve heard other survivors describe it, when people invest in us at our lowest — that I was a part of something larger and better than myself, that it wasn’t just me alone in the depths of hell, that I was part of something larger and stronger than myself.
I get asked a lot how I “beat” cancer — even though my first response is that you don’t technically “beat” an incurable disease; but a large part of that is that my oncologists put me on the harshest, most-effective treatment immediately, and, from minute one, everyone around me was just all hands on deck in making sure that, anything I needed, from financial support to emotional support to picking up prescriptions, without any concept of debt or repayment or anything. It was always, “What do you need from us to stay healthy and motivated to keep in treatment,” which is what anyone connected to a survivor needs to be, from the second your doctor offers to get you a glass of water.
To all my fellow survivors with a rare, incurable, or terminal diagnosis; my main advice for incurable disease survivors is not to think in binary win/loss, cure/die terms; it’s to figure out how you stay alive another four years and stay healthy enough to be a candidate for more, or more aggressive treatment. Four years is the half-life of medical knowledge; you make it that long, there’s more treatment available, your odds and life expectancy go up, that’s a much more achievable, “doable” goal than “How do I survive a disease with a 95% five-year mortality.”