June 21, 2017 was the first official day of summer break. G and H had playdates in the morning, and later that night, I took them to the lake to roast marshmallows. Matt decided not to meet us and that pinch of worry I wrote about yesterday was back. The story of this day one year ago does not look all that different from the story of the day before.
But, a year prior, on June 21, 2016, our story took a very dramatic turn. Matt and I went to Sloan for a second opinion appointment with a doctor we’d never met. I remember the moment this man who we’d never met walked in. I remember the paper in his hand and the heavy way he fell onto the stool. The way he looked at Matt and shook his head and sighed. I remember every heartbeat of the moment when I knew a truth I’d been dreading was about to be spoken aloud.
Two years ago today, we heard the results of the pathology report. The doctor at Sloan confirmed that Matt’s tumor was primarily a Glioblastoma, Grade 4. He told us that most people don’t live more than 18 months. He said only 25% of people make it past 2 years and after that the numbers drop significantly. He advised that Matt should get his affairs in order.
He stomped out hope.
We sat, stunned, as the doctor talked treatments. The recommended timeline to start treatment was 4-6 weeks after surgery and Matt was already two weeks out. The doctor conducted the most comprehensive mental and physical exam I’d seen to date, using instruments that wouldn’t appear in our lives again until Matt was in the ER at Columbia. Afterward, Matt and I sat outside and tried to wrap our heads around the news this stranger had delivered. And the more we churned over Sloan’s words, the more shock turned to anger. And we could do something about anger. Call Hackensack and accuse them of misleading us, betraying us, even. How could Hackensack have told us that Matt would be fine and Sloan tell us to get Matt’s affairs in order?
The doctor at Hackensack admitted that the picture he’d drawn with his words of comfort the week before had changed with the pathology report. But he told us not to look at the statistics. He told us that some people beat the disease, defy the odds. Matt’s tumor contained an IDH-1 mutation and studies had shown that patients with this mutation generally live longer. He gave us a reason to hope.
We went home to where Matt’s parents were babysitting the kids and, sitting on the playroom rug, we told them what Sloan had said. We talked options. We talked Duke and treatment overseas. We talked about never going back to Sloan. That day, we said whatever we did, we’d do as a team.
For me, I’d found my next glimmer of hope, my next research project. I read every study I could find that looked at IDH-1 mutations in GBM patients, and I clutched every positive statistic like a lifeline.
I write often about how I felt when we received bad news. I guess at what Matt was feeling. But I know exactly what Matt was thinking two years ago today. It’s all there, in text messages he sent. He talked about Duke, the side effects of radiation and chemotherapy (which I’ll get into in the coming days), and the sudden deadline we faced to pick a treatment plan.
And he added this final thought, loaded with disappointment and realism, hope and selflessness: So overall pretty shitty report but again this guy [Hackensack doctor] thinks I might have some mutant gene where I am fine so sorta back to unknown for another week or so. Even with the bad diagnosis, it’s not immediate, although 2 yrs flies by. I don’t want ppl worried about me but of course want to live and raise kids and not leave elaine, etc.
Matt was right that time would fly by, though we didn’t even get two years. And we didn’t know—couldn’t even begin to guess—how much of the time we did have would be consumed by doctor appointments and hospital stays and pinches of worry as Matt pulled away from himself.
Writing this post, remembering that two year milestone, has left me somewhat speechless. I’m not sure how to make sense of the fact that two years ago today, a doctor told us Matt wouldn’t make it two years, and he was right. There’s no way to spin that positive. But I warned from the beginning that this story had a sad ending. I was never writing to make sense of our ending. The story I wanted to share has always been the one of everything that happened in the middle. The relentless drive to find a cure and the teamwork that strengthened already powerful bonds. The good days and the bad days and the unfaltering hope weaved through it all.