Two days ago, I wrote that my records from 2016 become scarce. I told the story of how Matt ended up in the standard of care treatment arm of a clinical trial for unmethylated patients. I called that story part one of wrapping up 2016.
Part two of the story from 2016 finished about two years ago today. Matt and I took the kids to the town’s 4th of July carnival, I decided not to look for a child therapist for G and H (because Matt was back to work, off the Dex, and back to himself), and Duke reviewed the MRI. In my memory, when the phone rang, Matt and I were again sitting outside on the deck after the kids had gone to bed. In my memory, the phone call again lasted a few breathless minutes. That well-known doctor with the poor bedside manner told us what Hackensack and Morristown and Sloan had already told us based on the original, post-surgery MRI: the surgery was well-done.
Matt explained that he wanted something more than the standard of care treatment and asked if Duke had anything to offer. The well-known doctor who ordered the second post-surgery MRI because the first was too blurry for him, the one whose office didn’t help us get access to a MRI, whose request had sent us into a tailspin of stress and delays, told us that at this point, it was too late for Matt to start the process of enrolling in a clinical trial at Duke. The time it would take to travel to North Carolina, complete the necessary lab work, and sign all the paperwork, meant that Matt wouldn’t start treatment within the suggested timeframe. We understood that to mean a delay in starting treatment would be more dangerous than a clinical trial might be beneficial.
That second MRI that had taken over a week to procure added nothing to the conversation. And now we were too late.
(The feeling here: anger, frustration, and the sense that someone was playing mind games with us.)
We were left with a single option: the standard of care treatment at Hackensack.
Not just a single option, but the single option that offered the least hope. I remember hanging up the phone, the disappointment a palpable energy pulsing between us, and saying it would still be okay. Maybe standard of care didn’t work for other unmethylated brain tumors, but we’d find a way to make it work for him. I remember thinking if the treatment on its own was insufficient, I would green juice, and supplement, and will him into perfect (or at least, cancer free) health.
If the medical world wouldn’t give us the hope we wanted, we’d make our own.
And we did. We created so much hope that one year ago today, Matt signed a three-year lease for his next car. Brand new to the showroom, hot off the assembly line, sleek and streamlined in gun metal gray.
I’ve said often (too often?) that I read the text messages and emails and I search between the lines for the hope. I rely on my imperfect memory to help me go back in time and extract the hopeful thoughts pushing us forward. I very rarely find hope as tangible as I do in the memory of a year ago today. We were three days away from the first post-poliovirus, post-Avastin MRI and we never, not once, questioned whether Matt should sign a three year contract.
That’s not reading between the lines. That’s hope, manifested in action, in deed, in real life.
Matt drove that car for only six weeks. Even after he was unable to drive, he never entertained the idea of surrendering the lease. He remained sure, until the very end, that he’d recover, that he’d drive his car again.
That car was a symbol of his hope, manifested in gun metal gray.