October 11, 2017: This Patient

Yesterday I wrote that I was afraid of the visual that might imprint on G’s and H’s mind. October 11, 2017 left a visual imprinted on my mind that I know will be there forever.

When I arrived in the morning, Matt was in the cafeteria, belted into a wheelchair, wearing the standard issue medical dressing gown. His clothes had been bagged and sealed. His arms looked pale and thin, diminished, after long weeks of lying semi-conscious in a hospital bed. His phone lay, unused, beside him on the table. He sat, hunched over, staring at nothing. I slowed as I approached him realizing I’d almost walked right past him on route to his room. I almost hadn’t recognized my own husband.

We talked about his memory. The morning before, I had brought him a bagel—his favorite bagel sandwich from a deli nearby—and later in the day, when his mom asked, he couldn’t remember who’d brought the bagel. I asked whether he knew why he was at Kessler and he didn’t. I explained again. I asked whether he remembered seeing G and H, and he did. A small victory.

He ate ice cream with a fork and snapped at me when I suggested a spoon. I dropped the suggestion. Eating ice cream with a fork wasn’t going to hurt anyone.

When I left to pick up G and H, I called a friend in tears. I said I believed we (the doctors and Matt and I) could find a cure for him. I would devote my life to Matt, to his cure and his recovery. But what if he never returned to himself? Would Matt want this life? Would he be happy in this state?

The question was and is impossible to ask. More impossible to answer. I just wanted Matt with me. We all just wanted Matt. But what was Matt and what was the tumor? I didn’t know. I knew only that I had to believe Matt would come back to himself. No what ifs.

The Duke doctor called me later that afternoon. She wasn’t against surgically removing the tumor in the left parietal lobe—the one that had been treated with poliovirus—because the poliovirus was now (theoretically) working in his system, anyway. But we’d have to wait until he was much stronger. We canceled the October 15th MRI at Duke and said we’d re-evaluate when he was stronger.

I remember the shock that had coursed through me. The feeling of betrayal. So many times doctors had suggested surgery to remove the tumor in the left parietal lobe and time and time again Duke had said no, had told us that the poliovirus was working. We had taken that to mean we couldn’t remove the tumor without removing the chance at a cure. Everything we did was for a chance at a cure–the highest star in the sky.

But when had the poliovirus entered his system? When could we have removed the tumor that was turning our lives into a nightmare—stealing Matt away one smile, one laugh, one heartbeat at a time—and still have reaped the benefits of poliovirus? Matt had suffered so much, could it have all been avoided?

In that moment I thought, fairly or not, that Duke didn’t care about Matt. They didn’t care about how difficult our day-to-day had become, or the way our marriage had changed, or the things our children had seen. They cared about their clinical trial, the way the statistics looked on paper. This patient survived this long. This patient survived that long. Matt was just a this patient. In that moment I wanted to scream. Matt wasn’t a this patient. He was a husband and a father, a son, a brother, a friend. He was everything, except an experiment to drag out.

I don’t know if that’s fair to say. I don’t know if it’s true. As I have said so many times, the only villain is cancer and I am, at heart, an unreliable narrator, prejudiced as I am by grief and the memory of moments that have changed the very shape of my heart.

October 11th was another day that hurt and October 11th was also one day closer to an upswing. One that hadn’t suddenly appeared and wasn’t aided by Avastin. This upswing was due exclusively to Matt. His hard work. His desire to get home to G and H, who he never forgot even on those worst days.

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