Ask a Survivor — Social Distancing Version

So, I’m trapped indoors, I’ve canceled my gym membership for the immediately foreseeable future (this is true). Which means I’m trapped indoors with no end in sight. Obviously, this has some deep, sinister “Shining” implications (especially as my family has a worrisome tendency to isolate everyone in a not-terribly-healthy way even when there isn’t a quarantine). However, to distract myself from the wretchedness of this situation (if you’re a friend or neighbor; I love you; DO NOT COME OVER)(this can not be emphasized enough; on Day 1 of the self-made quarantine, we had neighbors visiting, people going door-to-door selling stuff, etc. — You begin to understand why HIV is so dangerous when you realize that the spread of a disease is partially-dependent upon how utterly resistant to changing habits people are), I thought I’d bring up some often-asked questions, as well as ones I’ve seen on various groups and message boards (that’s right, folks, we’re up and running again, online).

What are you doing to combat the boredom?

Uh, writing. Catching up on Netflix documentaries. My reading list is massive. The issue here is less about me going stir-crazy and more to do with cutting off human interaction (if the Internet was an adequate substitute, human life would’ve ended in the mid-90s, with the advent of Netscape Navigator)(and dating apps would’ve completely subsumed actual dating). For everyone out there inconvenienced and suddenly forced to cancel weddings, parties, graduations, and all of these things you thought would be big milestones, there’s a great comparison to AYA cancer — all these things you thought you’d do are suddenly called off for reasons far beyond your control. And it sucks, but everyone for this week is an honorary citizen of Planet Cancer. The only difference is, you get to leave, eventually.

We all have a rich, beautiful inner world deep inside. I know that sounds like some New Age, Yoga-and-essential-oils crap (the BEST response to coronavirus I’ve seen this week is from another AYA cancer survivor — “For everyone concerned about Covid 19, have you tried essential oils and yoga?”), but it’s true. Everyone has — or should have — some sort of internal dialogue; now is your (possibly last) chance to develop it. People callously wonder what would have happened if artists like Van Gogh or Da Vinci would have done if they had access to Ritalin and SSRIs. I think Van Gogh wouldn’t have died an early, weird death. I do wonder if they would have been crazy, artistic geniuses if they’d had access to Instagram and Tinder, though. Even though these things are still around and accessible, they’re just extensions of modern distractions. I got really good at doing nothing during my Year of Chemo, especially on those post-infusion days when the infusion pain and fatigue pretty much limited my activity to “sitting and staring.” Have you sat in your kitchen and noted how the change in light as the day passes changes the colors and the entire aesthetic of the room? That’s not just my kitchen, it’s everyone’s (trust me). Now’s a good time to develop those observational skills. Write, paint, play chess against your computer, embrace the nudist lifestyle, go completely bonkers as you’re tortured by ghosts and kill your whole family with an axe; these are all things that require privacy and peace, and you now have both in abundance. If all else fails, there’s a Google Earth version of Carmen Sandiego.

Any of my fellow cancer patients who currently have a Port or have had one in the past know how long I can go without flushing it? Or any nurses/docs/healthcare professionals who are familiar with this know?

I didn’t have the answer to this one, but this where the importance of getting out of the house and actually interacting with people is important, because one of my support groups has a member who had decent input (she’s also due for an infusion, so she’ll be asking this question on everyone’s behalf).

I did not get a port or venous access device, for reasons I’ve previously discussed (I was just out of neurosurgery and having an actual physical reminder my days were numbered just seemed to be far too depressing to contemplate). The recommended time is every 4–8 weeks, but my OG survivor friends say 6 weeks is fine.

Having said that, this is where you can spot the difference between great healthcare and good healthcare. A few months ago, I had an MRI during a nurse and medical technician strike. I didn’t have to do anything; I got a robo-call a few days before alerting me that my scan was still scheduled, although I should plan on possible delays, as well as warning me that the primary hospital parking lots were closed, but I could use the overflow lot in Temecula, with the bus service (okay, that’s a slight exaggeration, but when you have a limp, a distance of several blocks you hadn’t planned on is suddenly intimidating). I have a scan in a month; I have no doubt that I ain’t got no problem, the logistics staff are on the motherfucker. Until that point, worrying is a futile activity.

How did you “beat” glioblastoma?

I have no information that’s not also available to the general public, but I see variations on this question so frequently (and I’m asked variations of it so frequently), and my answer to it changes so frequently that I feel obligated to answer it a few times a year, as I learn more stuff (also, it’ll kill an hour, which is important in this exercise). As I’ve written, by definition, you can’t cure a terminal condition. But you can treat it as a chronic, recurring condition. Which is Step 1; view this as a manageable, dangerous disease, rather than some horrific monolithic death sentence. There are two types of cancer patients, I’ve noticed; those who tend to do as little to treat their condition as possible, and those who douse everything they eat in napalm and Agent Orange (okay, that’s a slight exaggeration, but not as much as you’d think). Because I was “primed” by two previous (benign) brain tumors, I was ready to throw-down with this thing from minute one. I’ll admit that I have some “lucky” mutations (yes, there is “lucky cancer” — it’s any cancer you can survive), and I was lucky enough to get into a clinical trial; but you do want to develop teatment-seeking behaviors. Which means staying healthy enough to survive treatment (lots of exercise, sleep, fiber, water, and protein)(obviously, my gym regimen has taken a serious dent in recent weeks, but I’m trying to sleep more and work on my diet), and, possibly more importantly, learning to tolerate treatment (there are antidepressants correlated with better long-term outcomes; I’m on one — Remoran)(and, even though there is the possibility of abuse and addiction, look into ativan — do not exceed recommended dosages, etc.)(I feel fine recommending that, because the steroids all survivors eventually wind up on — even temporarily — are extremely physiologically addictive and amazingly dangerous, but no one’s advocating a decadron-free surgical recovery). I’m also on melatonin (it’s also a very weird irony that the person railing against ativan because it causes drowsiness also tells people they MUST be on 20 mg of melatonin)(which would put you to sleep for a few weeks), which is also correlated with better outcomes; and RSO (CBD is a far better, safer pain-killer than aspirin and tylenol)(and there is some evidence THC makes chemo more effective). Apart from that, it’s mostly standard medications and treatment (I mean, apart from the experimental treatment, psychiatric meds, and medical marijuana). The hard part really is staying healthy (or close to it) while your body is turned into a toxic, radioactive warzone; I’ve written that I’ve met more GBM patients who discontinued (or were cut off of) treatment than those who completed it. There are actually physical therapists who specialize in oncology patients who can make better, more personalized recommendations about keeping healthy, and I’d recommend tracking one of them down.

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Science journalist, cancer survivor, biomedical consultant, the “Wednesday Addams of travel writers.”

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