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 

a place I never wanted to be

This is the story I never wanted to have to write.

This is the story I know will never have a happy ending.

Wait, no. This is the story of how I don’t get to have a happy ending.

Two weeks ago, I found out I have cancer in my lungs and my liver. My disease is no longer curable.

Let me be excruciatingly clear. This means, no matter what measures I do or do not take, I am eventually going to die of cancer.

I have lived with this possibility for a long time. The survival rates for relapsed Wilms are not exactly confidence-inspiring, but when I made it a year and a half past transplant I thought I may have landed on the right side of the odds. But almost eight months ago, I learned my cancer had relapsed again. I had surgery and radiation, and I dared to hope for the near-miracle of getting rid of the disease one more time.

The scientific part of me, though, couldn’t help but run the probabilities and know that gamble was most likely destined to fail. It’s why I kept radio silence about my latest relapse, only telling the people I see and speak to most often. I couldn’t bear putting on a hopeful face online, letting everyone think this was just a hiccup, when I knew so much worse news could--and likely would--be coming. 

There’s only so many times I can stand watching my news cause pain to the people I love. Please know, if I didn't tell you personally, it was only because the telling hurt too much to keep doing.

There is so much I want to say and so much I don’t want to say. I've felt so numb for so many months now, and with this latest shock it's hard for anything to feel real anymore.

In those moments when I do feel everything with clarity, I am overwhelmed with fear and anger and sadness and a deep, deep feeling of loss. I didn't know until now that you can grieve for your own life, but that is what I feel: grief for the life I had and all the people I love who I will lose, and grief for the life I might have had and all those dreams that will remain, forever, dreams deferred. It is an impossible feeling, this grief, and it is a feeling that makes me long for the numbness.

This is a place I never wanted to be, and it's hard to know what to say, how to tell this story.

I know what I have to say, and what I desperately need you to listen to: acceptance is not giving up.

I accept that the doctors and the MRIs are not mistaken; that, all miraculous occurrences aside, this disease will eventually kill me. Denying this reality only hurts me and the people around me. But just because I’m willing to accept this doesn’t mean I’ve lost hope. I still hope for a miracle. I still hope that I will be able to do so many more of the things I’ve always wanted to do.

I still find courage and hope in the love and support of the people around me. They make the days I have worth having, even as I ache at having to leave them.

My faith is a battered, fragile thing right now, but I still believe in things greater than myself. I still hope for better things to come.