What finally convinced me to add low dose chemo to my radiation schedule was Dr. Akerley saying that I wouldn’t lose my hair. I quote: “I give this regimen to blue-haired old ladies and they’re fine.” Being a reporter at heart, I ask for clarification: “They keep their blue hair?” I got the solemn nod.
You have to remember that the chemo is not being used to get rid of cancer cells directly, but to make the radiation work better. With my particular kind of cancer (thymic carcinoma), there’s really no hard evidence that any of this will help keep the cancer from coming back. So in the big picture, no one has proven that adding or not adding a poison regime affects the big picture. The chemo add-on is completely optional, just a little bit of insurance. Or maybe not. You can see why the decision to add chemo wasn’t a slam dunk, especially when considering possible side effects.
For 23 days, things were great, on my head, anyway. The Hairball of Knives and Fire comes and goes in intensity. It’s the end of the week, so it’s the Aggie bonfire right now in my esophagus. On day 24, I took out my hair band and lots of little hairs came with it. Horror. I ran my fingers through my hair: More mutineers. The next day, I go to dinner and there are strands of hair on the table. I remember this. This is looking like the harbinger of Chemo Bald. This is the point when I had all my locks shorn in 2001. I’d been dreading this as much or more than the nausea that usually accompanies treatment. (Cross fingers, still no nausea, neuropathy, ruined fingernails, mouth sores, bone aches, yellowy-green skin or any of the other lovely extras from chemotherapy.)
Here’s my calm and rational email exchange with Terry, my oncology nurse later that day:
Me: MY HAIR IS FALLING OUT!!! YOU AND DR. ACKERLEY SAID THIS WASN’T GOING TO HAPPEN!!!!!!!
Terry: It gets thin on some people, but it doesn’t all fall out.
Wendy: Because if it keeps falling out, I’m going to shave it into a mohawk, and that won’t be good for anybody!!!!!!!!!!!
Terry: Hide the razor. Resist the razor. I know it’s scary.
Truthfully, Terry, it’s not really scary. I’m even combing my hair again, after five days of thinking that dreadlocks or a rat’s nest would be better than no hair. Now, I have a plan. I figure the hair falling out now is the result of the first or second chemo treatment. I’ve had three, and I have one more (LAST ONE, YEA!!!!!) next Tuesday. If my hair loss gets noticeable, my MOvember is going to be a Mohawk Movember. As my Livestrong pal, Jerry Kelly, suggested, should I find the razor irresisitible, visualize a fundraising opportunity for my Livestrong Survivor Summit.
And, as my friends remind me (not that I need reminding), I’ve rocked a mohawk-fauxhawk before:
That’s at the Headdress Ball in Orlando. My hair had just started growing back in. Being a contrarian sometimes, I shaved it off and we created this fauxhawk for the evening.
All very cool, and it is a plan, anyway, but of course, I still don’t want to shave my head. For one, it’s 28 degrees and snowing in Park City today. That’s the practical side. The emotional side is that that bald head tells people you’re sick, right? Even as it tells people you’re fighting like hell. Oncology nurses will tell you that losing one’s hair is the side effect that often freaks people out the most. So for now, I’m going to do what Terry proposes. I’m resisting the razor, so forgive me if I leave a trail of DNA everywhere I go. Hopefully the “thinning” Terry describes doesn’t mean I’l look like the witch that tries to cook Bugs Bunny in the cauldron. Or else it’ll be ME sending another shouting email saying something like: WHAT’S UP WITH THIS, DOC (AND TERRY)?????