One year ago today, a friend asked how Matt was feeling and I wrote that he was “kinda concerning actually.” When my mom texted to ask how Matt was feeling, I wrote to her that he was very disoriented and struggling to make any kind of logical conversation. I didn’t go into detail, which means that I don’t have details to share.
I can guess. I can guess that he had trouble finding the word he wanted to say. That he struggled to answer questions. That our conversations looped in irrational circles and we both grew frustrated trying to communicate. That he asked G to turn off the television and then was upset with her when she did—because what he’d meant to say was something else entirely.
I can guess all of this because it’s what our lives began to look like. Every day. Every moment, every word, every look was impacted by brain cancer.
November 11, 2017 was a Saturday, which meant our usual doctor—at Columbia, because in my mind we’d all but officially transferred care from Duke—wasn’t in the office. I debated whether to call anyway. I considered what the doctor would do or suggest—move up the MRI or prescribe more steroids, which Matt despised. Neither option would give us (our family of four) the help we needed.
The cruelty of brain cancer: every moment was charged and desperate, and sometimes–much of the time–the doctors couldn’t help.
I decided to wait, to swallow the panic and let Matt rest. I believed maybe the cognitive decline I was witnessing was a side effect of a busy two days in Hershey Park. I remember vividly the stab of guilt associated with that thought. Maybe Hershey Park had been a mistake. Maybe he’d done too much and I’d not only let him, but encouraged him.
A year before that, on November 11, 2016 we (our family of four) were in the Dominican Republic on vacation. Matt was Matt, with a few slight tweaks. He drank less. He ate a little healthier. He tried not to miss a moment with G and H. We were days away from his first MRI after two rounds of chemo (aside from the initial six week treatment that is part of the standard of care). On the beach, Matt spotted an option for parasailing and looked at G, who has an intense fear of heights, and said let’s go. And G, who was—and is—a Daddy’s girl, said okay. We signed the waivers, Matt helped her into her life vest, and I watched as Matt and G sailed away with a boat full of future para-sailors.
The story I heard afterward from Matt was that G was the youngest person on that boat, that she panicked when it was her turn and refused to go. That Matt, plus a little peer pressure, somehow convinced her. That she loved it and everyone clapped for her when she finished.
To this day, G remembers how Matt snapped at her for doing what he’d asked her to do last year. It’s as clear a memory as the moment a boat full of strangers clapped for her.
One year later, I still find myself stunned by the speed with which brain cancer invaded our lives, shattered our normal, and left us scrambling to pick up the pieces.