Sunday, October 28, 2012

What a state I'm in

The bargain I struck with my doctors before starting treatment six weeks ago was that in exchange for an eventual return to health of unknown duration, I would be punished by side-effects of indeterminate intensity. Until a week or so ago, this all seemed like a pretty good deal. Now I’m left to wonder.

In a cancer survivor narrative like mine, this state I’m in is dead air time. It’s like an inadvertent interruption in a broadcast during which there’s no sound. I’m not in a medical crisis, but not quite finished with aggressive treatment either. There’s nothing much I haven’t already said that illuminates my situation. What’s mostly inside my head right now is the background buzz of a brain set on pause.

I have a single infusion of ipi to go. I know pretty much what to expect from its systemic effects on my body. The worst of them is itchy skin, which makes me a little crazy. It can be scratched, however, and at least momentarily relieved. Then there’s my nearly bald head, just recently relieved of its thatch of hair. It leaves our home feeling 10 degrees cooler than it really is. I wear a beanie sometimes just to warm myself up.

What’s most disturbing to me is my loss of appetite, not just for food but for life itself. Never have I felt the need like I do at present to just crawl inside myself and hang out a “Do not disturb” sign. My dry mouth makes all food unpalatable. It’s a hard phenomenon to describe, as you’d think some kind of favorite food would prevail. It doesn’t—I’ve tried them all. No matter what’s on the plate in front of me, I eat two bites and put down the fork.

If not for Ensure, I’d probably be in the hospital with a feeding tube up my nose.

I’m told that my appetite will likely return as the effects of whole-brain radiation gradually subside. I’m hoping some of my initiative will with it. My eagerness for a return to an enhanced quality of life cannot be stated strongly enough. This whole exercise has been about knocking down, if not out, the melanoma that lives within me. The price for this opportunity is what I’m now paying.

5 comments:

Elisa said...

Hi Peter,
I'm glad to be able to read your blog... I've thought of you (& Ellen) several times the past week or two and wondered how/what you were doing. Now I have an idea. I am truly thankful that you are blogging about your experiences and struggles - it really helps to understand and pray.

Steve said...

The end is in sight, Peter. The fact that you're able to write about this, and do it well, is a good sign. Hang in there, things will return to normal. All of your friends and relatives are praying for you. God hears us.
Steve

Nancy said...

Peter, you have a whole army of supporters here on the sidelines, praying for you. I pray that the cancer is exorcised from your brain, and that you write about it and share your feelings as well as you do. Hugs and hope to you and Ellen. Nancy

Karen said...

Peter, I am praying for you and Ellen too. God IS teaching you through this experience and through that you also teach us. May HE continue to strengthen you daily.
Karen

Cam McCandless said...

Hi Peter,
Stephen and I join the chorus of well-wishers and cheerleaders. Thanks for keeping up the writing. Your writing on bad days puts my writing on good days to shame. I wonder if this period isn't really the hardest. One of my favorite poems, because I remember Mom quoting it, is AA Milne's "Halfway Down" from When We Were Very Young. In its entirety: Halfway down the stairs/Is a stair/Where I sit./There isn't any/Other stair/Quite like/It./I'm not at the bottom,/I'm not at the top;/So this is the stair/Where/I always/Stop./Halfway up the stairs/Isn't up,/And isn't down./It isn't in the nursery,/It isn't in the town./And all sorts of funny thoughts/Run round my head:/"It isn't really/Anywhere!/It's somewhere else/Instead!"