If I showed a doctor our text message conversation from April 17, 2017, about whether Matt was going to paddle tennis with a few guys, they’d see a typo. Matt wrote they instead of that, so what? The doctors couldn’t see what I saw when I read that response. Without the benefit of thirteen years of exchanging text messages (about 500 a month!) and emailing daily, his answer would seem perfectly fine. But, that text message was everything that was going wrong.
First, Matt loved tennis. He never passed up an opportunity to play. When we moved to our first house, and neither of us knew a soul in a thirty mile radius, he found a stranger to play with via some tennis matchmaker website. The only thing that could tear him away from a tennis match was a fantasy sports draft. So the fact that he wasn’t definite about going was alarming.
Second, Matt was really social. He loved going out, being out, talking to people. Even if he wasn’t in the mood to play, he’d probably go just to hang with the guys.
Then again, it’s easy for me to always blame brain cancer.
I really do wish I could tell, when I compare emails from 2009 or 2012 with those from 2017, whether the differences I note were caused by brain cancer (and brain surgery and medication) or whether those slight shifts were due simply to that fact that Matt had two kids, a mortgage, a terminal cancer diagnosis, and a wife that wouldn’t stop asking if he was okay. (Fun fact: I can and do get more annoying during each downward spiral, so much so that the kids started calling my litany of questions the daily checklist…but that’s still a few months away.)
Would Matt still have been over tennis and socializing even without the cancer diagnosis? I think that’s the hard part of brain cancer, for the patient and for the caregiver. It’s impossible to separate the person from the disease. What was Matt and what was tumor? But maybe that’s true always and you can never separate a person from their circumstances and any attempt to try is wasted energy.
When I started this project, I didn’t know how widely I’d share it, if I would share it at all. A lot more people are following me along this journey than I’d expected, and I’ve panicked and second guessed myself half a million times. But, then I think to the day I decided to share. I ran into a woman who had a family member recently diagnosed with GBM. I offered her doctors’ names and numbers. She didn’t need them. What she wanted was to hear Matt’s story. Just his story. And that was all I’d wanted when we were in the thick of treatments. To hear someone else’s story. To know we weren’t alone on this speeding train with an invisible monster we couldn’t understand.
I still don’t know how to explain the unique challenges that come with brain cancer in a way that does justice to the experience. All I can do is show snippets of daily life, explain how a text message could send every nerve in my body into high alert, and describe how I pinned my hopes on that May 1st MRI.