August 25, 2017 was Matt’s last day of work before we headed to the shore for a family vacation and then to Duke for another round of treatment. The plan we came up with gave us four days of normalcy at the beach with G, H, and the rest of the family before we had to return to the world of brain cancer.
One year ago today, I waited for the nurse at Duke to call me back. I’d sent an email with a rundown of Matt’s symptoms the night before and left a voicemail in the morning. I could see that the email had been read, so I hoped her silence meant she was consulting with the doctor, getting a plan together for Matt.
At 1:58 p.m. I texted Matt to ask how he was feeling. He responded with this: Same story. Good in spurts. I recoup fast but the double vision sucks for a while. Then gets better. But definitely on and off all day (and last few days). He followed up that text with a picture of himself with one eye closed.
I’ve said that so many days are a blur in my memory. I’ve said that our lives began to spin out of control, one episode on the heels of the next and I barely managed to process one new development before we were hit with another.
But I remember the moment I received that photo of Matt. I remember the physical reaction I had to seeing him with one eye closed. The way my stomach dropped. The way an anxious current started in my heart and shot through to my fingers, which shook as I responded, my stress and fear manifesting in less than a compassionate response. I texted: Way to fuel my anxiety. I hope that’s on purpose.
I owe this story honesty. And honestly, sometimes I was too afraid to be compassionate. And for reasons I can’t pin down, that picture scared me more than it probably should have.
Matt told me he couldn’t text without closing one eye to see but I began to worry that he also was having trouble controlling the muscle in that eye, that the eye was closing without Matt realizing it.
I picked Matt up from work and we went out to dinner with G and H. I remember the moment the Duke nurse returned our call. I remember glancing at Matt, knowing he’d think I was overreacting, as I told the nurse about the double vision, headaches, and neck pain. I told her that Matt might disagree, but that it all seemed worse to me. She said the doctor had decided to put Matt back on Dex in an effort to hopefully relieve some of the symptoms. She said he should continue taking nothing more than an Extra Strength Tylenol for the pain. And she referred Matt for a full spinal MRI during the few days we’d been at Duke for the Gamma Knife radiation.
I was relieved when she suggested the spinal MRI, though it meant a long and uncomfortable test for Matt. The unspoken fear that Matt’s intense neck/back pain was caused by the tumor traveling into his spine had taken root in my mind. I’d been losing sleep for days worrying, staring at Matt’s neck and posture, telling myself that I’d simply read too many random studies and I’d implanted too many worst case scenarios into my head. I’d spent endless hours reminding myself that GBM does not leave the brain, except in the rarest of cases, and Matt was not that rare case. Of course not.
He was. And somehow we didn’t know until January, weeks before the last ember of hope extinguished.
And the questions I’m left with are how–how did it escape notice for so long–and why–why did Matt’s tumor run rampant in the unbelievable way that it did.
I don’t know whether this story will provide those answers.
What I do know is that what happened to Matt is rare. I searched the dregs of the Internet and found almost nothing comparable. I’ve almost convinced myself that the way his tumor mutated and ravaged his body and mind is a nightmare unlike any the doctors had witnessed before. (Always overdramatic, even in Post Hope.)
What I do know is that his story needs to be told, not because it may help someone at this point—because I truly hope no one can relate to the story about to unfold—but because any fight that is fought with the strength, courage, and heart with which Matt fought deserves to be told and shared.