A vicious wind and rain storm moved through New Jersey causing flooding and flight cancellations. I only vaguely remember the storm but it must have been bad because the airline preemptively cancelled Matt’s flight to North Carolina for April 7, 2017. Yes, he had to go back so soon. Though only a week had passed since the infusion, and nobody expected to see side effects or even results for months, the trial protocol was strict. He was to return one week after the infusion for blood work and labs. Then a week after again for more blood work and labs and then two weeks after for a MRI, then monthly visits, which would turn into every other month visits, and then the trial protocol was done. Hooray?
For these first two appointments, which would be nothing but blood work, labs, and a check-in with the clinical trial nurse, the plan was that Matt would travel alone. Fly in early morning, fly out by afternoon. Easy as can be. Except, neither appointment ended up being particularly easy—and April 7th’s flight cancellation was the easier of the two. The Duke medical team allowed Matt to get his blood drawn locally and sent to Duke for testing. It meant he missed some of the other workup, but they’d see him in a week and no big deal.
For me, at least. For Matt, it meant getting on the phone to get the prescription he needed, finding a lab, waiting a million hours to be seen, getting his blood drawn, and making sure the workup was sent to the right place.
At this stage in our story, I was not the point person for the doctors and schedulers. Matt made the phone calls, he drove himself to the lab, he handled his own care and I was simply back up, a role I didn’t mind and one that allowed me to convince myself nothing had changed.
After Matt’s craniotomy in June 2016, the neurosurgeon who performed the resection found me and Matt’s dad in the waiting area. He led us around the corner to a line of plastic chairs where we sat in a row and angled ourselves to look at each other. With a practiced gravity, the neurosurgeon told us that he believed, from experience, that the tumor he removed from Matt’s brain was in fact malignant; it looked cancerous. He gave us an education in what the treatment would look like: Temodar and daily radiation for the first six weeks. He said patients generally can drive themselves to radiation and then go to work after. He knew a lawyer who did exactly that. He said it’ll be nothing but an annoyance and our life won’t change.
Our life won’t change. He’ll make it to his kids’ high school graduation. Those were the words, spoken from various doctors, that I held onto, that I parroted back when asked how Matt was doing, that I repeated to myself when anxiety clawed through my dreams. And the neurosurgeon was right. At first. Things changed but the outlines of our normal life were still there. But at some point Matt’s disease progressed off the determined path, acted out in ways no doctor could have guessed and we were so deeply entrenched in those promises, spoken so early on, that we continued to believe nothing had changed until things had changed so drastically that we couldn’t recognize our lives at all.