On Thursday, June 22, 2017, I took the kids to the town’s 4th of July carnival. Matt didn’t meet us and, once again, that pinch of worry returned. The story of a year ago today doesn’t look all that different from the day before, or the day before that, except for one critical difference: I was starting to make excuses. Whenever anyone asked about Matt, I found myself finding valid reasons to explain why he couldn’t make it. Looking back, I wonder whether I was trying to ease that pinch of worry for myself, too.
A year before that, we were still reeling from Sloan’s prognosis, still clinging to the hopeful spin Hackensack put on Sloan’s prognosis, and desperate to figure out a plan. We were determined to make sure that plan involved Duke, the best brain tumor center in the country, the institution that was blazing a path toward the cure.
Days earlier, we’d called the main line at Duke and a voicemail picked up. The recording said something along the lines of: your call is important to us; we will call everyone back, but since the 60 Minutes special, we’ve been overwhelmed with phone calls and we can’t guarantee when that callback will occur.
I said just a few days ago that I would never use the word lucky when it comes to what happened to Matt. But, in writing the story of today, I realize that I may have to add an asterisk to that sentence. Because while we weren’t lucky when it came to what happened medically, we were incredibly, enormously lucky with the friends and family who stepped in to fight alongside us, who called on their friends and family to get our name in front of the care coordinator. And thanks to that extended network, the care coordinator returned my call just hours after I left a voicemail. She told me to send Matt’s medical records and MRI and I did.
My clearest memory of June 22, 2016 comes after the kids had gone to bed. I remember the blue-black color of the sky and the annoying swarm of mosquitoes attacking our arms and legs. I remember sitting outside with Matt, talking about something I can no longer remember (although cancer and treatment plans would top my list of guesses), and freezing mid-sentence when my phone started buzzing. A blocked number. I answered and the voice on the other end of the line belonged to a doctor at Duke, the most well-known doctor at Duke.
This well-known doctor, whose bedside manner is as notorious as his brilliance is respected, told us he’d received and reviewed Matt’s medical records and MRI. But the MRI was too blurry for him to accurately see anything and we’d need to get another one to send to him. Then he hung up. The call lasted maybe two minutes. I think we managed to whisper a shell-shocked thank you before the line disconnected.
At this point, we weren’t sure how Duke would fit into the treatment picture. We knew only we needed them on our team. So, if Duke wanted a MRI, Duke was getting a MRI. (If only it was that easy.)
Looking back, I know we found valid reasons to choose Duke long before that first brusque conversation. But knowing how the story will unfold, all the ways it often felt like Duke abandoned us, I can’t help but be unsure as to which light to view this memory, this initial contact. Good memory or bad?
Before Matt was diagnosed, the words brain cancer and Glioblastoma weren’t anywhere near my radar. I did not know Duke was one of the most (the most?) respected brain tumor centers in the country. And as I was writing this post, I was trying to remember how Duke entered the conversation, who told us that Duke was the place to go for treatment. I keep trying to think of the moment Matt and I pinned our hopes on Duke, rather than any of the other top ranked brain tumor institutions. I’m not sure we did much research on the others at this early stage. I think we watched the 60 Minutes feature, traded articles featuring miracle stories of patients who were treated at Duke and thriving, and internalized Duke’s motto: At Duke, there is hope.
That’s all we wanted. Hope. Because we couldn’t fight a disease if we didn’t believe we would win.
Which means, even with all the benefit of hindsight, I’m choosing to remember how excited we were to have received a call from this well-respected doctor. How we laughed off his brusqueness. How we felt halfway down the road to a miracle. Good memory.