Matt finished with day two of Gamma Knife by eight in the morning. We had the entire rest of the day to ourselves. Twelve hours, at least. The story of August 31, 2017 is long and scattered and to be honest, slightly tragic. August 31, 2017 is not only a day with a heartbreaking last, but also a day that I can’t help but look back on and ask “what if.” Despite my best intentions to avoid the question, I can’t help but ask “what if” and single out a villain.
After Matt finished day two—again with no immediately apparent side effects—we rode the elevator upstairs to the neuro-oncologist’s office. The Dex the doctor had prescribed helped somewhat with Matt’s neck and back pain, but the double vision was only getting worse. Matt struggled to read and watch television. In our email correspondence, the nurse had never specifically addressed Matt’s worsening double vision so we decided to skip email and phones and ask our question in person. (Pounding on that door for attention.)
We weren’t granted access to the doctor. She was off-site and every other doctor was busy with back-to-back-to-back patients. Instead, a nurse (one who was filling in for our usual nurse) came out to speak with us. The nurse sat us down in a corner of a waiting room and listened as I explained the pain and Matt’s worsening double vision. The nurse told us to see an ophthalmologist for glasses.
Matt and I thanked the nurse for his time and agreed that a visit to an ophthalmologist made sense. We tried to sightsee downtown Durham, but Matt’s headache returned with a vengeance. We went back to the hotel for Matt to rest—close the curtains, shut out daylight, and sleep. As I had the day before, I made my way down to the courtyard to write. This time, I wasn’t alone outside.
Despite all the empty tables in the courtyard, a man with a cane sat at the table nearest to mine. I recognized him—Matt and I had seen him sitting at the bar the day before and chatting with the concierge that morning. He smoked cigarette after cigarette while I stared blankly at a screen waiting for words that didn’t come. After a while, he struck up a conversation with me. I learned that he was a patient of Duke’s as well, and living in the hotel for the next six weeks while undergoing a first round of radiation for a brain stem tumor. He told me the tumor was inoperable, that he’d lost feeling in one entire side of his body—hence the cane—and that he was staying at the hotel alone, though his ex-wife was coming to visit that afternoon.
I gave him a rough sketch of Matt’s story and told him we were in the poliovirus trial. He said he’d been ineligible. In that moment, I couldn’t help but feel grateful, again, that Matt had made it into the poliovirus trial, that we had this true glimmer of hope in our lives.
The conversation ended when Matt called to tell me he was awake and the man’s ex-wife was due to arrive. The man wished Matt good luck and I wished him the same.
Matt was feeling better and we decided to see a movie and go out for dinner. We watched Lucky Logan, a movie I’d never heard of until that day. Afterward, we went out for dinner to a place called M Sushi. We sat at the sushi bar and ordered plate after plate. Matt was as himself—sarcasm, humor, sharpness—as he’d been in days.
August 31, 2017 stands out in my mind—without the help of text messages and emails and photos—for three reasons.
One, I remember how bleak the man sounded when he spoke about his diagnosis, how my heart ached for the lonely man undergoing treatment day after day without a single loved one around. I remember thinking there is no one who is fighting this brutal disease who doesn’t want only to be seen and heard and treated as more than a number in a clinical trial by someone.
Two, the moment Duke told Matt to get glasses for the double vision and dismissed us from the waiting room remains stuck in my mind. I cannot think of that moment without my stomach knotting up. I cannot help but think “what if?” I have to use all the strength left in my body to keep from screaming, from pointing my finger at those minutes in the waiting room and believing that I’ve found the moment Duke truly failed us. They should have asked more questions. They should have paid more attention. They should have seen what Columbia saw all those weeks later.
Their failure, their epic dismissal and failure to pay attention to what Matt and I were saying, won’t be discovered until early October while Matt battled for his life at Columbia. Their failure, their epic dismissal and failure to pay attention to what Matt and I were saying, is something that I don’t know I’ll ever be able to forgive.
I’ve said before that my goal is not to tell the story to make anyone look like the villain and that remains true. The truth is that Duke may have made a mistake and it may have impacted the end of our story, or it may have done nothing but shift the lines of our hope. The truth is that I may have made a mistake by failing to keep Columbia in the loop. (That moment I’d lost faith in them becomes crucial.) The truth is that even identifying the moment the story could have gone into a different direction doesn’t change the direction in which the story went.
And yet, that “what if” and that outrage lingers on the periphery.
The final reason August 31, 2017 sticks out in my mind is this. Matt and I hadn’t been ourselves in weeks for the dozen or so reasons I’ve already given. I’d warned at the beginning of this month that, by the end, our lives would be turned upside down and nearly unrecognizable. But on August 31, 2017, sitting at the bar of M Sushi, ordering plate after plate of (delicious) food, we weren’t patient and caregiver or ailing husband and worried wife. We were simply Matt and Elaine. August 31, 2017 is a last—our last truly fun date night, the last time I remember being us.
That sounds sad and it is—five months remain in this story and in those five months, the memories in which I can say we were simply Matt and Elaine become nearly impossible to detect—but I find myself comforted by the memory of August 31, 2017. So many lasts, including the last “I love you,” are lost to the tapestry of memory, but not this one.
August 31, 2017 could be a day defined by anger or regret or heartache. But it’s not. Because when I think of August 31, 2017, I think first of that fun dinner, and find myself grateful to have the memory of laughter and love burning brighter than all the rest.