I hope that you have already read my bit about radiation
Now that we are all caught up, I can fill in a few more details about my experience. I cannot stress enough that all brain tumors are different, all people are different, even practices vary from one institution to the next. My experience is probably not the same as yours was/will be.
I have a brain tumor buddy who heard back in 2014 via our small town rumor mill that my tumor had started to reemerge. She knew that I was slated to get radiation, which she had had several years before, and we met up at a bar to talk (she is A LOT more fun than I am).
Anyway, this friend showed me the pinprick sized tattoo that her radiology team gave her to ensure that she was in the same position every day. I was a little excited about this - I'd be getting a teeny tiny tattoo! - but when I asked my team about it they told me that they don't do that.
(At this point I still naively believed that brain cancer specialists had a common understanding of best practices. The longer you live with this shit the more willy nilly it all starts to seem).
This friend was also able to work full time throughout her treatment. Hats off to her, I know it wasn't easy.
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Another friend suffered severe nausea while undergoing radiation. She was raditated a few years after I was and asked me how I could stand being so sick to my stomach all the time. It was never an issue for me.
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A third friend struggled with his balance to the point he couldn't walk.
Back to me. (I’m not actually my favorite subject, my story just happens to be the one I know best).
As I said before, radiation plumb wore me out. (I am currently writing in Google docs, which is suggesting that I change “radiation” to “the radiation.” I will leave it as is, but am sharing that suggestion for you to mull over).
I also lost a ton of hair, MUCH more than everyone else I know. Even the doctors were surprised by how much hair I lost. Yes, other people lost their hair, but they seemed to be able to obscure it with a sweep of their bangs. My whole head was toasted and the cosmetic proof lingered (hair did grow back in most areas, thinner in places, but as you all know a permanent burn scar remains).
I have been asked about losing my hair. Did it thin? Did it come out on my pillow at night? In a hairbrush?
My hair came out in clumps, just like a nasty old dog sheds its undercoat. There was some discreet difference between my curls that were still ok, and those tufts that had let go and I spent many afternoons crying in front of the bathroom mirror, lifting entire locks of hair out of my head. It was horrible.
I had been warned that the radiation would burn my bare skin, that it could hurt or even blister like a bad sunburn. It burned me - that’s why I have the burn scar - but I don’t remember it being especially painful. It was raw but certainly wasn’t blistered or anything.
I was not allowed to cut my hair after I started the radiation - it would make my mask fit too loosely - so I kept a long braid with my bare top. I wore ball caps for some time (both to hide my head and to protect it) but the baldness extended beyond what could be hidden by a ball cap.
Enter my oldest sister who gifted me a hat from Etsy that I would recommend to anyone getting their brain radiated. It was soft! Though it wasn’t painful, my head was tender (I don’t think I realized how much until I stopped wearing a ballcap). It was washable, it was cute. It wasn’t too hot (it takes a long time for hair to start growing so my extreme baldness was with me throughout the year and summers are long and hot here).
I think this link will take you there (or give you an idea of my hat). I’m not getting paid for this, I’m not getting paid for anything, I’m just spreading the good news.
Cry, laugh, or gasp like each of my doctors did when I took off my hat as you look at these pictures of my dingdanghead.
Above: sitting in my funky little apartment. No, I never lost those little wisps.
Below: Posing with one of my FAVORITE doctors. This guy really is the best but I don't get to see him anymore (that's a good thing, if I have to see him again, I'm not doing well). I think this was taken before the above pictures, you can see I had a little more hair.
Similar to the one above, here I am waiting for the oncologist (it was always a one to two hour wait to see her and I was always ornery by about 10 minutes in)
That hospital lighting doesn't do anyone any favors, does it? It also makes you delirious with impatience/migraine activity/hunger. Whatever negative feeling or thought you have is magnified by time + florescent lights.
Below: What's that guy with the ring? And a close up where you can see my surgical scar and some of the sadder textures of radiated skin.
And finally, approaching summer, baby hairs emerge. (Self portrait in that same funky tiny apartment oh I miss it).
