So, this is in response to numerous questions I’ve seen floating around social media on GBM survivor groups/sites, boiled down.
I’m terrified. What do I do?
So, first off, the fact that you’re scared shitless is actually a good thing; it indicates you’re aware of just how alien and horrifying your situation is. Honestly, you should be more worried if you’re feeling fine (my radiation oncologist earned a lot of goodwill with me very early on by using my awareness of my circumstances as a way to gauge my mental/psychological status)(none of my oncologists are stupid, but that woman is so clever, her foot might fall off)(if you get that reference, kudos; if you don’t get that reference, I’d recommend looking up Blackaddder)(watching Blackadder is also a great distraction technique). The first thing every cancer survivor needs to hear is; you are not alone. And we are all very afraid.
The good news is, even if things get worse, you’re probably at your most psychologically low point (I suffered a TIA — a “ministroke” — during treatment, had a seizure between surgery and treatment as a result of an error weaning me off of dexamethasone, and had various “flairs” and abnormalities/radiation scarring show up on scans during treatment — and all of that sucked, make no mistake, but it still wasn’t nearly as psychologically horrible as hearing the phrase, “Stage 4”), and, if you do make it over this hump… well, it’s not all daisies, and it never gets easy, but it does get easier. Early in treatment, I noticed I had a tendency to obsess about a future that was dominated by an incurable, chronic disease, or the horrifying possibility of death. In short, we live in a society that teaches us to focus on the future, without the firm caveat that we can not actually accurately predict the future. We’re taught the old parable of the grasshopper and the ants, without the more-accurate ending, “And suddenly, due to global warming and increasingly erratic and unpredictable weather patterns, there was a disastrous blizzard that killed both the grasshopper and the ant, because sometimes terrible things happen, despite the best preparation and planning in the world.” I’m still trying to process that revelation — that life is innately chaotic and unpredictable, and sometimes all the foresight and planning in the world are worthless. Even though most of GBM survivors’ fear of a gruesome, early demise is just that, I suspect a lot of it is just grief at the loss of your planned future, and grief at the loss of the most human of innocence — that you have a future, and there is a discernible, comprehensible correlation between cause and effect.
There were two critical concepts that I had to lean into; the first was to accept Ronald Spiers’ advice from Band of Brothers, “ The only hope you have is to accept the fact that you’re already dead. The sooner you accept that, the sooner you’ll be able to function as a soldier is supposed to function: without mercy, without compassion, without remorse. All war depends upon it.” Even though I dislike warfare comparisons in conjunction with The Most Terrifying Disease Known to Medicine (TM) because they connote a much more valiant and active struggle and mystique to a process that’s literally just sitting around, being poisoned, and hoping the poison kills the disease before it kills you; this one sort of helped. Assume you’re going to die at the end of treatment, and your goal is suddenly to get more treatment and extend it for as long as possible. Don’t dwell on any emotions — positive or negative — for too long, or you’re likely to be consumed by them. If that happens before treatment is concluded, you lose. You’ll have to operate in a much colder, more-calculated fashion than you’re used to, but the bonus is you won’t be quite as hindered by fear. Which will enable you to stomach the idea of risky, potentially-dangerous treatment, which is, sadly, the only way forward.
The second concept is living in the moment without being bothered by certainty. This is tough, because even though you can find classes and teachers on Mindful Living, they’re still operating from the luxurious position that you have a future, and any current problems are temporary set-backs or struggles to be overcome. When you know that the struggle only stops at the grave, you quickly learn to enjoy it. Was a year of chemo horrible and debilitating and painful? You bet your ass. It was made much more bearable by the realization that, at the end of it, that would literally be the End of It. Enjoy that book you’ve been putting off reading. Write that book you’ve been putting off writing. Don’t skip an infusion or radiation treatment, because they make you feel bad, embrace them because, the alternative is never feeling anything again.
I also recommend anti-anxiety meds (particularly klonopin and/or ativan)(ativan’s also an anti-nausea medication, so you’re likely to end up on that sooner or later). If you’ve decided to go ahead with stuff like surgery, radiation, and chemo, you’ve already discarded any semblance of a “natural life” (Dan Riskin points out in Mother Nature Is Trying to Kill You that “natural” is a completely artificial, Western myth usually used by one group to shame or scam another group, when, in reality, a natural life would consist of dying in childbirth or being eaten by large carnivores before 30), so you might as well double-down on that bet.
And just take it in 20-minute segments (you can use whatever time-frame you want, my infusions were done in 20-minute stages, so I learned to focus on just making it through each 20-minute stage, which also makes a two-hour infusion much more bearable). Don’t focus on the rest of treatment, or the rest of your life; just make it through the next twenty minutes. And then the next twenty.
I dislike accusations of bravery, because they imply I had a choice in the matter. I only had one choice: death, or gamble on experimental treatment (combined with SOC, I might add). Obviously, that gamble paid off for me, but I honestly don’t know how it might work for you or your loved ones. But you will become bolder as treatment continues, and you’ll adapt to living a life defined by uncertainty.
You’ll have to; you don’t have any choice.