July 18, 2017 was exactly one week into the 6 week CCNU cycle. The handout we’d received from Duke had informed us that the worst of the side effects—low white blood cell count leading to risk of infection and low platelet count leading to risk of bleeding—wouldn’t manifest (if at all) until week three. Aside from the minor personality differences that I noted, Matt seemed fine. He hadn’t had a headache since July 11th. He’d scheduled all the Avastin, blood work, and MRI appointments for the near future. We were settled into our summer in a way that felt like we finally had a handle on our lives.
A year ago today, I texted Matt two pictures. One, of H actually participating in an activity at camp, and another, of G using the basketball hoop that had taken Matt all weekend to build.
He responded by saying: you have no idea how happy that pic makes me. Or maybe u do 🙂
On July 18, 2017, I did know what made him happy, or at least I had a good idea of what made him happy. I knew which photos of the kids would make him smile; I knew his favorite dinner, his favorite drink, his favorite author and favorite show. I knew what to say to make him laugh in the middle of an argument or what not to say when he was ranting about work.
And then one day, I didn’t know, anymore.
One day, everything I said made him more irritated. One day, there was no funny story I could tell or snack I could bring that made him smile. Suddenly, it was easy to believe that I was never saying the right thing or supporting him the right way. Logically, I knew Matt was no longer in control of himself, that brain cancer had taken over, but illogically, I couldn’t stifle the voice that had slipped into the places where my heart had broken, the voice that questioned every moment, that told me I was doing everything wrong.
I wrote a similar post to this one on May 31. I wrote that even in post-hope, it’s difficult to admit that many days it felt like I made his day worse instead of better. And the closer the story takes me to those days, the more the fear creeps in. I’m afraid that it’ll be obvious that it was my fault I couldn’t make Matt happy. I write so often about villains and I am terrified that in true unreliable narrator fashion, the story will reveal that I am the actual villain. Apparently, that quiet, slippery voice is still there, still cruel and questioning.
But the painful reality of brain cancer is that “one day” and “suddenly” are lies. The sad truth is that there won’t be a day in this story when I’ll write today is the day Matt stopped being Matt or today is the day I let that cruel voice grow too loud. It was all a slippery slope.
I can’t go back in time and tell myself not to listen to that voice. I can’t warn the July 18, 2017 version of myself to hold on to those texted words and the smiley face that accompanied them because too soon the smiles and banter will be gone. All I can do is tell the story, find a way to stop listening to that voice (through telling this story), and, as always, hope to make a little good.