Saturday, April 5, 2014

I see colors, I don't fear the choice
Sometimes we're only flying for awhile

These posts are never easy to start, but that's always been the way with writing for me. Maybe it's because I often don't know until I get going just exactly what I plan to say. I shunned outlines in college, and had to rewrite most of my introductions when I wrote my original thesis into something else entirely.

This post in particular I've started and restarted. See, there's something I have to tell you, and so many of my previous attempts have focused on trying to explain.

Forget it. I don't want to explain myself, and I don't need to, really. I know I've made the right decision, and my family supports me.

I've declined to pursue further treatment beyond palliative care. No chemo. No phase I trials in far-flung places. No flying out to DC to see national experts.

In some ways, it was an easy decision. Nearly two years ago, as I struggled to recover from the damage surgery, chemo, stem cell transplants and radiation had inflicted, I made a promise to myself. I promised myself that I would never, ever do this to myself again if it wasn't going to cure the disease. No more chemo. No more treatments that would make me feel so miserable, ever again.

I'm keeping that promise now.

I waffled, because I was scared. It took me a few weeks to admit aloud that I would not be getting treatment. It took a lot of thinking and some desperate prayer. But when I did, when I confirmed the choice with my doctors and my family, I knew I had made the right choice.

It wasn't just knowing that my logic was sound, my pro-cons thorough. It's just that I've hardly felt so right, so sure, after making a major decision, than I did when I decided not to pursue treatment. It was as if finally, for once, my mind and gut and soul were in perfect agreement about the right thing to do.

What happens to me next, well, that's out of my hands now. The thing is, it always was. No matter what treatments I do or do not have, the end result of this recurrence was always going to be the same. You may not believe in a higher power, but I do, and this has felt less like turning my life over to God than accepting it's been in his hands all along.

a promise kept

I see colors, I don't fear the choice
Sometimes we're only flying for awhile

These posts are never easy to start, but that's always been the way with writing for me. Maybe it's because I often don't know until I get going just exactly what I plan to say. I shunned outlines in college, and had to rewrite most of my introductions when I wrote my original thesis into something else entirely.

I was torn when sitting down to write today between a need to explain and the childish feeling that I shouldn't have to explain myself, but I've realized it's not so much the need to explain as the need for you to understand.

For you to understand why I'm not pursuing any further treatment.

Nearly two years ago, as I struggled to recover from the damage stem cell transplants and radiation had inflicted, I made a promise to myself. I promised myself that I would never, ever do this to myself again if it wasn't going to cure the disease. No more chemo. No more treatments that would make me feel so miserable, ever again.

I didn't say it aloud, or write it down. I told only one person, my friend Cathy the only witness to my conviction that I would not and could not go through the tortures of treatment again.

I started listing those tortures here, but honestly no list I make can make you understand. Not unless you've been through it yourself. Or you were there firsthand to witness how treatment hollowed me out, devastating my body and scarring my mind and hardening my heart.

I tell people that I am feeling well, that I'm doing okay, but for good on three years now that's been a lie. I've spent so many years with a broken-down body and diseased lungs that I think I I've forgotten what healthy actually feels like. The only "healthy" I know now is relative, but it's been enough. Enough to fake normal and push my body to do all the things I want to do, enough to go to school and have a food blog and go out with my friends and even dance a little at the bar.

Enough, as long as I don't catch any kind of illness. I've spent the last two weeks nearly incapacitated by a sinus infection; I can't get up the stairs to my own room without needing a break.

As long as I don't