From a Gryt writing prompt:

Think of a time when you were feeling low. What was something that was said that was inspirational or changed your mood?

So, when you get cancer — especially if you get it before 40 (I’m at three times and I haven’t hit 35 yet) — you’ll get loads of people trying to send you inspiration porn. I get it; this is still a heavily-stigmatized disease, and no one wants to “come out,” even if it’s a fellow member of the tribe. So, you get a lot of stories about grandparents (thanks), and they usually — two-thirds, based on my count — end with, “And they died.” Now, I get that’s the inevitable, unfortunate end to every single human story on the planet, but, when you’re actually in the belly of the beast, you don’t really need that. And you don’t need that sort of peppy, “You can do it” crap from able-bodied people who aren’t about to sign up to have pieces of their body cut off, irradiated, and poisoned (from a reductionist point of view, treatments are pretty horrifying)(once you know the biomedical rationale of all of it, it’s still amazingly horrifying). Whenever anyone had a story that didn’t end with, “and they died,” it was good. I had a friend saying her mom had gone through chemoradiation and been cured. That helped. I had one friend who told me his mother was given six months to live, and she made it four years. Not as good as, “and they lived happily ever after,” especially if your goal is to make it past 40, but it helped.

The all-time prize-winner, though, was from a phlebotomist named Rose (normally, I try to respect my medical providers’ anonymity, but I doubt you’d be able to track her down based on the information provided here, and I don’t know if she’ll ever see this). Because I was in a clinical trial to establish drug safety (sort of; chemo, even the lighter-touch, more-targeted stuff I was on, is still poisonous)(and it needs to be — that’s the selling point), I had to get blood draws once a week. For an entire year. Usually, I got that done whenever I had my weekly infusion (which required an IV), but, on my one week “off” a month, I had to go in to the phlebotomist. This was around Cycle 3, so, my scans were still coming back murky (the initial 6-week radiation and chemo can give a lot of false positives, so you don’t really know how things are really going until Cycle 5 or 6), and I’d been reviewing the statistics (grim)(really, really grim if you have brain cancer).

Before we continue, I’d like to offer a visual of Rose. She’s Asian, in upper-middle age, and, if you know anything about Yoko Ono’s artistic endeavors (briefly; she was married to John Lennon, and all you need to know about her career is that that is the least-interesting thing about her), Rose looks pretty much like how you’d imagine Yoko Ono to look — bright blue hair, giant, sequined/rhinestone (I didn’t a long enough look to figure out which they were) Elton John glasses. After months of extremely professionally dressed doctors, nurses, and other phlebotomists, her insanely successful attempt to stand out, visually, was appreciated. She commented that I looked glum. Instead of exercising my usual sarcasm and pointing out that she was about to stab me in the arm, I — and this is a rarity for me, I will admit — went for sincerity, and admitted that the statistics for people with my diagnosis were rather grim (less than 5% of GBM patients make it ten years). She blew my mind with the best line of the month:

You can’t trust statistics. I know one girl, they gave her six months to live; I’m still drawing her blood seven years later.

It almost doesn’t even matter if it’s true, it bucked me up. And that’s the thing for all the healthy people out there interacting with AYA cancer survivors; we don’t want to hear about your cousin (or other urban legend-level relation) who struggled valiantly and died, we want to hear about someone in a similar situation who lived. And that’s why I advocate that all survivors — or anyone struggling with any chronic illness — be very public; you never know when someone you’ve never met will hear your story and smile. And your story is the best, most-lasting legacy you can leave behind.

Written by

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

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