Aug 25, 2017
TRANSCRIPT
This is Episode 003 of Glioblast-O-Cast. What was radiation like?
Hello, and welcome to Glioblast-O-Cast, a podcast about life beyond glioblastoma. I am your host, Meg Turecek.
In this episode I'll talk about the radiation portion of the standard treatment, and I'll share what I did to lighten its toll and get through it with my radiation shoes.
With glioblastoma, there are not a lot of treatment options. The standard of care today all over the world is surgery to remove the tumor, or as much as possible, chemo in the form of a daily pill ‑‑ that's for another episode ‑‑ and radiation, which is the topic right now.
Radiation's done, at least for me it was, over the course of six weeks, five days a week. This is because the full concentration of radiation in one dose is just too much for the human body to handle. And like anything, radiation has its own risks.
I wasn't too keen on the idea of radiation or chemo, as I had seen my mom go through those treatments 25 years prior for ovarian cancer. I saw how destroyed she was, so much so she never recovered from treatment. I didn't want that for myself.
But the protocols used today are somewhat different and improved. Despite that, I still couldn't get over certain memories of my mom.
When my mom was on treatment, and this was 1989 or 1990, TV sets were big boxes. Lots of people did not have cable and needed an antenna for reception. I remember static on the TV whenever Mom walked into the room. There's probably no connection between Mom's radiation and TV static, but that was my memory and my concern with my treatment.
Would I become radioactive? Would I glow in the dark?
My radiologist said no. I asked.
Well, where's the fun in that? Really, there isn't any fun with radiation treatment. That's why I make my own. It helps me to laugh and keep mostly positive. I think that's been key for my recovery.
For radiation to the brain, you have to stay very still. That's why there is a plastic mask molded to fit precisely to keep you exactly in the position each time. Check my show notes for my goofy radiation selfie photo. When treatment finished, I got to keep the mask.
So at each daily radiation treatment, I was strapped in place. It actually took longer to position me than the actual dose, only a couple minutes five days a week for 30 sessions.
For me, I did have some side effects from the radiation that started in week 3. I started to lose my hair, but only at the entry and exit points of the radiation. My eventual bald spots were two little triangles. Losing hair in clumps and handfuls in the shower or when combing it is not exactly fun. For some, it can be really sad. Others find it to be liberating. I think I was mostly just annoyed. But with my hair tied together in a ponytail or like I wore it for treatment in pig tails, I easily covered up the bald spots.
It was still no fun on the treatment path, though. So I made my own fun. That's my tip from this. Make your own fun. Find something to help you smile and get your mind off the treatment moments.
So how did I find the fun?
In a way it was about the appearance, like the pig tails. Sure, that hair style was practical for me during radiation. But I decided to also make it a little bit of fun. I used neon green hair bands, and it wasn't just pig tails. There were braids. And, of course, I wore my radiation shoes to each appointment.
Okay. There's really no such thing as radiation shoes in cancer treatment. I just called them that because every appointment I wore my gray Nike running shoes with the neon green laces and soles. I'll have photos of that on my show page as well.
A brain tumor and treatment and prognosis are certainly not fun. So I made myself smile. I made myself laugh.
I think about baseball players that wear the same socks over and over once they start winning... or sports fans who wear their lucky jersey to a game hoping it's going to ensure a win.That's why I kind of had a little uniform for myself going through treatment, my radiation shoes.
Thank you for listening. This has been Glioblast-O-Cast Episode 3.
Theme music for Episode 003: “Feelin’ Good” Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License, http://creativecommons.org/licenses/by/3.0/