I still forget that I’m a brain tumor patient. Recently, an editor from Kiplinger’s interviewed me about my health for an article and I found it difficult to get back into that mental space. The first thing out of my mouth is always, “I’m fine.” It’s more complicated than that, of course.
Last February, the doctors at NIH told me that my tumor’s behavior was so strange that they were going to retest it. Pieces of my brain were in a freezer somewhere, stuck in layers of beeswax (how weird does that sound?), and they were going to run a genetic panel on it. Maybe we were wrong, they said. It might be something much more benign. We’ll test it and let you know.
It’s strange to be told good news and feel nothing but grief. How in the *#$! does this happen, I asked? Well, it’s been six years and testing has come so far, that’s it’s entirely possible, they said.
I went home, telling myself I wouldn’t get my hopes up. Nothing had changed yet. I had arranged my life to fit what I knew and I couldn’t change anything yet. I was still angry - how dare science to this to me?
But it’s what I wanted, ultimately. My anger began to thaw, and I thought maybe, just maybe, everything would be ok. Maybe I had served my time on the Island of Misfit Patients and I could live normally again.
The waiting stretched on for months.
At my next appointment in the spring of 2016, they handed me a stack of genetic results. My original diagnosis was intact, much to the doctors’ astonishment. We have never seen this, they kept saying.
Nothing had changed. I’m special in a way nobody has seen before.
It feels like a bad movie plot: tell yourself you won’t get your hopes up, do the exact opposite, and then learn that it’s better to hope and be disappointed than never hope at all. I don’t know. Again, science has searched the world over for where I belong and it’s here, in no man’s land. And I don’t like it.
I had another MRI last month, and this time the head of the whole department gave me the news. Your tumor is shrinking, he said, and we don’t know why.
It’s so interesting, he continued. We have no idea what’s going on, but it’s good news. How about I see you in six months?
I always thought of diagnosis as somewhat static. People get diabetes. They break an arm. It’s a label, a known constant. But it isn’t. I’m a brain tumor patient, but science doesn’t quite know what to do with me. I know my tumor’s genetic markers and mutations, but I don’t know what the future holds.
And so when people ask about my health, I do forget. It’s honestly how I keep from going crazy. I have other things to do: work on my mental health, keep Nate fed and happy, buy more yarn.
This is my place, where I belong. And I’m doing the best I can.