Sunday, June 5, 2016, was our last innocent day, our last day of living without the unimaginable weight a brain cancer diagnosis on our minds. After this day two years ago, the life we knew collapsed and we spent everyday finding a way to rebuild it.
Matt took H to meet a friend for a boy’s day out. When he came home, he told me that he might need a doctor.
He said he’d been driving home with H when he’d felt the urge to go to the bathroom. He said he’d planned to wait until he got home because he was only about ten minutes away from the house, but his body had different plans. And this time, there was no kilt to pretend it never happened. This time, Matt couldn’t blame the beer.
Whatever eggshells we’d been walking on around each other disappeared. Maybe we couldn’t figure out why we were off, but now, finally, we were presented with an actual problem we could solve. We jumped into action mode and called a urologist (we assumed the issue must be prostate-related). When voicemail answered, we decided Matt shouldn’t wait. He went to an urgent care clinic. An hour or so later, he came home with a prescription for Spring allergies. (I still can’t figure this one out. Either Matt failed to mention the incontinence or urgent care clinics deserve the bad reputation following them.)
A while back I wrote about lasts, and how often we don’t remember lasts because we can’t know something is the last until long after that last has faded into distant memory. Until starting today’s post, I never thought of June 5, 2016 as our last “before brain cancer” day. (Which is noteworthy because Matt and I frequently thought of things in terms of before and after, most famously, we joked with his sisters and cousin that his life was split into Before-Elaine, BE, and After-Elaine, AE.) But I remember this last all too clearly.
I remember the moment Matt told me what had happened to him and that it had happened the day before, too. I remember the look on his face and I wish I knew the words to describe that expression, some complex version of vulnerable and terrified and confused. I remember being stunned speechless when Matt came home with a prescription for an antihistamine, which he then filled.
As was so often the case during our battle against Glioblastoma, we had nothing to do but wait. We were waiting on June 5, 2017, too. For Matt’s first Avastin infusion at Columbia, for Matt’s next MRI which would show us, we hoped, how much progress he’d made, and especially, for the moment the doctor walked in and said he was cured.
I haven’t written too much about this post-hope year in the last few days for two reasons. One, I haven’t known what to say, how to explain this four month mark without instantly depressing everyone reading (which is never my plan). And, two, when writing about these last before-brain-cancer-days, I can’t help but hate that I questioned us, that I doubted Matt for even a second, that I didn’t stop long enough to remember who I’d married and realize there must be some bigger than my imagination reason for the changes I saw in him.
None of that really cooperates with my message of hope.
Which maybe is okay, because, after all, this is the post-hope year. But also, maybe, in some small way, all that messiness does complement hope. Maybe hope doesn’t have to always be poetic. Maybe sometimes the words can feel inadequate and the story can hurt and all that matters is that you wrote the words and told the story and didn’t quit when it all collapsed again.
Maybe hope is nothing more than finding a way to rebuild despite the unimaginable weight of the after.