One year ago today, on November 28, 2017, Matt and I drove to Columbia for a bone biopsy.
Almost exactly two months earlier, on September 29th, in a fit of paranoia, I’d dragged Matt to the emergency room for a chest x-ray to make a desperate attempt to pre-empt the next disaster. The trip to the emergency room did nothing to prevent the next down cycle (hydrocephalus), but the chest x-ray revealed sclerotic lesions on Matt’s spine and ribs. Two months later, after an inconclusive bone marrow biopsy on October 13th, an inconclusive thyroid biopsy on November 2nd, and an inconclusive—and alarming— repeat PET scan on October 24th, we were left with one final test.
The Columbia doctor had hoped to avoid a bone biopsy. We wanted to understand Matt’s sclerotic lesions—ensure there was nothing sinister going on in his bones—but a bone biopsy was a long, painful procedure, and theoretically, unnecessary when a PET scan or bone marrow biopsy or thyroid biopsy could give us the answers we sought.
But Matt was a mystery. Two months had gone by and we’d learned nothing, done nothing. Two months after learning about the lesions on his spine and ribs, after every other test had been exhausted and unhelpful, we still needed answers. Though I hated the idea of putting Matt through more tests I wanted to know what exactly we were dealing with. If there was a secondary cancer, I wanted to face it head on.
We arrived at Columbia at noon for pre-procedural paperwork. I don’t remember much of the paperwork. I don’t remember Matt going in for the procedure or what I did while I waited for him to finish. I do remember the hours after the procedure, the kind nurse who found Matt a sandwich and offered one to me, who rushed us through the discharge procedures because she knew the difference between getting on the George Washington Bridge at 4:15 versus 4:45 could mean an hour in traffic, who gave me a name for what Matt was experiencing.
Expressive Aphasia. Every time Matt said one word but meant another, every time he couldn’t find the word he was looking for, every time he grew frustrated that I wasn’t understanding his meaning fast enough—all of that was expressive aphasia. Matt wasn’t suffering from a handful of symptoms. He was suffering from one, which manifested in a variety of ways.
There’s a power in naming things. Giving something a name makes it real, makes it tangible and manageable and less terrifying. Giving Matt’s symptoms a name made them less isolating. The subtle logic behind the relief I felt when the nurse named Matt’s symptoms could best be explained like this: If the symptoms have a name, then Matt isn’t the only one who’s suffered with these symptoms. Our singular experience is at least somewhat universal; We’re not the only ones who’ve faced these struggles.
Essentially, giving Matt’s symptoms a name reminded us that we weren’t alone.
Living with Glioblastoma, providing care to a patient with Glioblastoma, is an intensely isolating experience, even when surrounded by family and friends. Every moment is fragile. Every detail of life is flipped upside down and turned inside out in a way that’s impossible to put into words–not unlike Post Hope.
One year ago today, a nurse told me a name and made our experience feel more manageable and less lonely. It was an invaluable gift, one I’m grateful for even a year later.