One year ago today, Matt was away on his corporate retreat. We didn’t text very much, and when we did exchange messages, they were quick updates about our days. Instead of texting, Matt called me. Phone calls were highly unusual for us, reserved solely for emergencies and Matt’s work trips. Whenever Matt was away for work, I could expect a call from him when he woke up, before he went to dinner, and before he went to bed. Looking back, I could almost believe that we spoke more often when he was away for work then when he was home. Call it a twenty-first century marriage.
But that’s not much of a story. No blip. Nothing obvious. If there was anything subtle to notice, I wasn’t there to witness it.
I didn’t have to search too hard for a story from another year. I remember this week in 2016 too well. It’s a week I’d promised to return to regarding a topic that is all too familiar to many cancer patients: hair loss.
Two years ago today, Matt started losing his hair. Not from the chemotherapy, which is the usual cause of hair loss. His hair loss was a direct result of the radiation he’d been receiving five days a week for the past month. Which meant, his hair loss was confined only to the area receiving radiation, the front left side of his hair.
When Matt and I walked into Hackensack for our very first appointment, we took the elevator down one flight to the neuro-oncology floor and sat in the waiting room among all the other patients. We were easily the youngest couple in the room by two decades. There were patients in wheelchairs, caregivers with tired eyes and bleary expressions, and a man with thick, wild hair surrounding a perfectly circular bald spot on the left side of his head. And I remember looking around and thinking this won’t be Matt, that can’t be us; we are too young and too close to happily ever after to have it ripped away. The life we have is too special to lose.
After we left the appointment, Matt remarked on the man we’d seen. We assumed that the bald circle was where the man had received radiation. (And from then on, I imagined Matt’s radiation as a laser beam into his skull. Though, I’m not sure that’s accurate medically.) Matt said he didn’t understand why the man wouldn’t just shave his head. Why walk around with a perfectly round bald spot?
Matt’s hair fell out slowly. At first, a few wisps on his pillow. I remember standing in the kitchen with Matt debating what he should do. Could he hide the hair loss with a combover? Should he shave his head?
Vanity certainly factored into Matt’s self-consciousness. But I think the debate to shave his head or not spoke to something more than vanity. It spoke to perception, the way he saw himself and the way he worried others would see him.
After diagnosis, but before losing his hair, when Matt looked in the mirror, he didn’t see a man suffering from a terminal disease. He could believe that when strangers looked at him, they didn’t see a man who had a disease that carried an eighteen month prognosis. He was simply Matt. After Matt started losing his hair, he was still Matt, but when he looked in the mirror, he saw the missing patches of hair and the scar that had been mostly hidden. In other words, he saw the cancer. Everyone who looked at him could see the cancer. That invisible monster had been made visible. Those first few wisps made it all real in a way surgery, chemo, and radiation had not.
Despite frequently joking that he didn’t mind losing his hair because it wasn’t his best feature, the idea of shaving his head didn’t sit well with Matt. Suddenly, we understood the man in the waiting room with the wild hair and the obvious patch of radiation baldness. Suddenly, Matt was the man in the waiting room with the obvious patch of radiation baldness and the uncertainty over what to do next.
Turns out, I was wrong when I said Matt would never be the man with the radiation baldness in the waiting room. I was also wrong when I believed Matt would never be the patient in the wheelchair and I would never be the caregiver with the tired eyes and the bleary expression.
But I was right, too. Because we were too young to have lived what we lived and we were too close to happily ever after—in our twenty-first century marriage—to have had it ripped away. And we did have something too special to lose.
I think, maybe, the cruelty of brain cancer—all cancer—is everyone in the waiting room had something too special to lose.
For Matt and me, it’s gone, but not lost. It’ll be preserved in memories and photos and, hopefully, if I succeed, in this blog.
I have a feeling that when something is too special to lose, it can never be truly lost. I hope so, anyway.