On June 26, 2017, the kids had their first day of camp, I tried out a new chia-matcha-coconut pudding recipe for Matt, and H had his first t-ball practice. As far as I remember, it was an uneventful day. The kids had a great first day at camp, Matt hated the pudding, and he didn’t end up coming to watch t-ball practice–because I told him not to. The practice was indoors, at a batting cage, and G and I barely had any room to stand ourselves. I told him not to worry about coming because he’d come to an actual game, outdoors, where there would be plenty of room to sit. He agreed standing in a cramped space seemed miserable; he’d come next time.
When I boil that conversation down to its most basic assumption, I find this hope filled premise: we had a lifetime of practices and games to sit through; We—he—could afford to miss one.
On June 26, 2016, the pictures in my phone tell me we spent the morning at the lake. The texts reveal nothing of what we did or what we were thinking. And for those reasons, I was mostly at a loss for the story of the day. Until I looked at the emails. A single email Matt sent while we were at a BBQ with friends reminded me how many issues we were juggling all at once, how we could never stop juggling, even on a Sunday, even at a BBQ with friends.
I’ve written about the quickly approaching deadline to make a decision on where to receive treatment. I’ve written about Duke’s request for a new MRI and how that was proving to be an impossible task. I haven’t yet touched on the idea of clinical trials and the question of methylated versus unmethylated tumors.
To explain, I need to backtrack slightly. When the pathology report arrived and the Sloan doctor delivered the devastating news, one particular piece of the brain tumor puzzle was still missing. Was Matt’s tumor methylated or unmethylated? Methylated tumors do better with the standard of care treatment (radiation and temodar) than unmethylated tumors. We already knew Matt had one favorable genetic marker (the IDH-1 mutation) and we were anxiously waiting to learn whether he also possessed this second advantageous factor. As of June 26, 2016, we didn’t know.
Despite not knowing, Matt was feeling pressure to sign up for a clinical trial at Hackensack and we were busy researching the trials for both methylated and unmethylated tumors. My memory is fuzzy, and my understanding might be skewed, but this is how I understood our options. If his tumor was methylated, the ethical rules demanded that he be put into a trial that also offered him the standard of care treatment (ex: standard of care + an experimental drug or standard of care + placebo). If his tumor was unmethylated, the clinical trial could compare the standard of care treatment to an experimental drug (for our purposes, that drug was Nivolumab) because the standard of care would likely be ineffective, anyway.
Matt was hesitant to enroll in anything at Hackensack until he learned whether Duke would take him as a patient. We reasoned we’d have a better chance of qualifying for the Polio virus clinical trial—which was only available to patients who’d experienced a recurrence—if we were established patients of Duke from the outset. The hope was, obviously, that Matt would never have a recurrence, that whatever treatment he did would destroy his tumor for good. But if not, polio was our backup plan.
On June 26, 2016, a dozen different roads stretched out ahead of us. Looking back, when I boil down how we approached every decision, I find this hope filled premise: the polio virus vaccine—the clinical trial featured twice on 60 Minutes—was going to cure Matt. It was just a matter of time.
When I write about our days, I often try to find the hopeful subtext in a conversation or decision, and often find myself in awe of how intrinsic hope was to our fight. How it was there, in everything, without us even realizing it. In post hope, there is no need to boil down every conversation and decision to its most basic element to find a hope-filled premise. Which sounds sad at first, but it’s not. It’s simply a reflection of the fact that hope isn’t hidden in subtext anymore. It’s extrinsic. It’s a conscious choice, everyday.