I start every summer with a long list of ambitious to-dos. That list has included anything from paint a wall in G’s room (very ambitious and completely unrealistic) to clean out the kids’ closets in order to make space for the next size (not so ambitious and yet also, apparently, unrealistic). Every year, the summer flies by, most of my list remains untouched, and I find myself asking what I did with all that time I had while the kids were at camp.
I know what I did last year with all that free time. I wrote. I listened to audiobooks while making green juices for Matt. I Googled. I looked at my long, untouched list of to-dos and opened the laptop to search the same terms I’d searched the day before. “GBM and new tumor” or “GBM and separate lesion” “or “Glioblastoma in a new location”. The results that appeared never confirmed or denied whether it was uncommon for a tumor to move around so much. The results never confirmed or denied whether Matt’s newest tumor was more concerning than Duke had let on.
When Google failed me, I turned to the brain cancer forums. I scanned the stories posted by patients and caregivers and looked for a story that sounded similar. I checked again to see whether the woman who’d said she was cancer free after receiving the poliovirus vaccine at Duke had responded to my message or posted again. I paid particular attention to the fact that her tumor had returned post infusion, but that her poliovirus-infused immune system had fought off the tumor cells. I memorized the words of her story and imagined writing our story of triumph one day.
Digging into the depths of these forums, I found less than flattering opinions about poliovirus and its side effects. In those forums, I also learned the horrors associated with late stage GBM. My heart broke for every story I read, stories I never shared with Matt because he didn’t need to know, stories that I swore would never be ours because they seemed outside the realm of possibility. These were stories about horrors that could not actually happen. Especially not to us, not to Matt, who was so smart and strong and young. But I read all the stories, all the time. Because knowledge is power, right? Because some part of me thought if I knew what could happen, it would not happen. Glioblastoma had snuck up on us three times already, but this time I’d be armed with all those stories and I wouldn’t let GBM sneak up on us. I’d outsmart it. With will power and Frankincense oil and a stubborn refusal to lose to this aggressive disease.
When the story became ours, when I lived the things I’d only read about, the story still seemed outside the realm of possibility.
Most days in Post Hope, this story, and the horrors buried within this story, still seem outside the realm of possibility.
A year ago today, when the kids came home from camp, I shoved every awful story I’d read to some faraway compartment in my mind (to be retrieved the next day when I restarted that useless Google search), and took them out for ice cream with their friends. Matt went to play tennis at the lake. When he came home, he was disappointed in how he’d played, which wasn’t unusual—everyone’s entitled to an off day—but warning bells silently pealed.
I often talk about how our hope was accompanied with naivety and denial. But maybe we weren’t as naive as I thought. I knew exactly what the future could hold. I knew, in sometimes gruesome detail, the horrors that had befallen others who suffered from Glioblastoma. I just also knew Matt.
And Matt defeating GBM, even an unusually aggressive form of GBM, was not outside the realm of possibility.