On August 18, Matt went to work, I took G and H shopping for school supplies and back packs, and Matt and I took turns calling Duke. An appointment for gamma knife radiation had put on the schedule for him and we hadn’t been consulted. We weren’t ready to commit to Duke’s plan without at least discussing the surgery option Columbia had put forth.
In between texting each other updates about our efforts to get through to Duke, we texted about the annual father-kids camping trip in September. There was no question that Matt would go with G and H. That’s hope manifested, right? In between text messages updating each other about doctor calls and test results, we texted about a camping trip with the assumption that Matt would be fine. Difficult now did not mean difficult forever, or even difficult a month from now.
Later that day, Matt and I heard from Duke. The doctor explained that surgery was not a great option for Matt because he’d need to stop the Avastin for at least four weeks before surgery. (Once again, that drug that I swore Matt would never take, that had been marketed to us as nothing but an uber steroid, closed doors on potential treatments.) The problem would be inflammation, before surgery and after surgery. Her rationale made sense to us. And besides, Duke was still the only one offering a cure. Although in hindsight, I wonder whether at this point the Duke doctor, who had never spoken the words “quality of life” to us, was still offering a cure via poliovirus, or if even she knew a cure was no longer a possibility for Matt. I have to begin wondering now, through the cynical lens of hindsight, if at this point, Duke was beginning to lose sight of Matt as a patient, and seeing only Matt, the statistic (or footnote) in their clinical trial report.
That may be unfair, but as Matt’s disease progressed, it was a thought that gained more and more traction in my mind. But maybe I’d already started looking to cast someone in the role of villain.
The Duke doctors told us the radiation oncologists who would be performing the gamma knife radiation wanted us at Duke from Wednesday to Wednesday of the next week. My stomach bottomed out. There were the logistical concerns: the kids were still on summer break, we were supposed to be leaving for the shore for our annual family trip, and much of the support system we relied on for help with the kids was away during that week. But the heartache I felt wasn’t at all logistical. It was simply wildly irrational. The thought of leaving G and H for a week—even though we’d had to leave them before—was unbearable. I told Matt maybe we could bring them to Duke with us. He’d receive radiation in the mornings and then we’d explore North Carolina in the afternoon. (Clearly in my stress I’d become delusional.)
In Post-Hope, I have a better understanding of the reluctance to leave G and H. I know when things feel impossible, when I feel like I’m losing my control over reality, my priority becomes protecting G and H, shielding them from a storm, and somehow, whether true or not, it feels easier to do that when they are right beside me.
On August 18, 2017, we decided not to make any travel and scheduling decisions until we spoke to the radiation oncologists, who were supposed to call the next day.
That night, Matt fell down the stairs. Just two steps, and he landed onto a carpeted floor. He was fine, upset with himself, but fine.
In true Matt fashion, he’d fallen, and he’d gotten right back up.