Friday, January 1, 2016

Feminist Body Struggle

This is a another post about the life of a woman with a brain tumor, and the consequences of taking many, many pills each and every day.

Yesterday, as we reached the waning hours of New Year's Eve, I wrote an email to my MUSC neuro-oncologist.  You may not have noticed this, but my cheeks have swollen.  JUST a tiny bit, but noticeable.  My brother Trey observed earlier this month that my cheeks were changing, and he was right.  So yesterday I wrote:

Dear Great-Guy-Who-Won't-Be-Named-But-He's-Awesome: 
I'm a little surprised.  Since when am I a woman who cares about my appearances?  But I read a feminist book last semester about the fact that I can be a radical AND interested in how I look.  So I'd like some thoughts that popped into my mind.  You are the audience:

  • My ability to communicate is, of course, crucial to me, second only to Maybelle (and I'm feeling better at letting my guilt fade as others help).  Gotta start here.
  • But under all the truly important things,  I find that I'm sort of obsessing with my face.  My body, too, sure, but whatever.  I'm looking at pictures from two months ago, and I really look different than I do today.
  • So, what about that?
  • You said you and I could step back a bit from the dexamethasone [a steroid].  When would that happen, and why?
  • Is this appearance—the slightly noticeable but visible face—going to get larger?  If I just keep looking this way I can work looking through it.  But if it keeps getting larger, I will have TOO MUCH material for this book I'm writing.
  • Oh, minor question:  I took dexamethasone pills last night.  I'm planning to do it around mid-day, when I'll be able to eat and have more.  Do I do one more day, or am I done since I'll have gone through two pills, twice?

I had a lot of these thoughts at 3:30am.  Then I went and got an Ativan, and at least I could rest.  But I didn't forget the questions I wanted from you!
Thanks for taking care of our Feminist Body Struggle.

My Great-Guy-Who-Won't-Be-Named-But-He's-Awesome wrote last night:

So sorry for the late reply. It turns out you are already on a reduced dose of steroids, from where you were.  The steroids are now only around the irinotecan infusion every few weeks.  I think you're currently experiencing the cumulative effects of the prior more frequent dosing.  I expect the puffiness in your face to stabilize and slowly decrease.

How nice that it's the New Year's Day.


  1. So glad to hear the puffiness will start to reduce soon. It's horrible when your face gets so puffy you have trouble seeing out of your eyes (this actually happened to a friend of mine, also a feminist ahead of her time).

    1. I'm glad that your friend and I ARE feminists and WERE puffy people.