A year ago today, after waiting for hours to see my oncologist, I received the news that my tumor was essentially dead. After years of struggle, surgery, physical therapy, medication regimens that I thought might break me, it was finally over. At least I was hopeful in that moment that it might be. A year later, I’m less hopeful.
My latest MRI showed increased cell activity in my big tumor and while that doesn’t necessarily mean I’ll receive news that it’s growing at my next scan, every desmoid patient knows how that information looms in your head. I’ve never gone longer than a year and a half without a recurrence. My next scan will be a year and a half after I got word my tumor was dead. Hopeful, I am not.
When I started writing about my tumor, how this disease invaded my life, I thought about the very first person that I saw with this disease. I thought about how his presence on the internet made me think for the very first time since my diagnosis, I’m going to be okay. I wanted to be another voice saying, it’s going to be okay, but today I’m not hopeful.
I was reluctant to write anything about what I was feeling a year later, after being so very hopeful and so wonderfully enthusiastic about my prognosis. I hesitated to show you the other side, that a year later, I’m less hopeful.
The reason why I’ve let you in after hemming and hawing for an hour at my keyboard, the reason why I didn’t pull the covers over my head this morning when I really wanted to is because sometimes hopeless is part of the deal.
Sometimes it’s dark in my head.
Sometimes I feel guilty when I’m well and my friends are not.
Sometimes I hate what this disease has done to my body.
Sometimes I cry because I can’t hold it in anymore.
Sometimes I’m tired of being in pain.
Sometimes I dread being awake.
Sometimes I am so angry this happened to me.
Sometimes I’m bitter and resentful.
Sometimes I’m hopeless.
But most of the time, I’m not. Most of the time I’ve accepted that this may be a chronic condition for me. Most of the time I understand that oral chemo may be a big part of my life and I’m thankful we’ve found something that works. Most of the time I realize I’ve got it easier than a whole lot of other people. Most of the time I feel lucky as hell for going through this. But sometimes I don’t. And sometimes you have to say that, you have to feel that, you have to let everyone know.
So, I’m letting you know. A year later, I’m less hopeful.
I’m less hopeful today. I’m crying reading about how excited I was a year ago, remembering that I thought I might never have to deal with my tumor ever again. I’m letting you know I’m scared and I feel weak. I’m letting you know I’m less hopeful today, but I’m letting you know that’s okay.
A year ago today, I got some good news. A year ago today, I was hopeful. A year later, I’m not and that’s how it goes. Tomorrow I may tell you, things are not that bad. But today, today I’m less hopeful and I’m letting you know.
I’m letting you know it’s okay. I’m letting you know I’m okay. And I’m letting you know you’re okay even if you’re feeling less hopeful.