January 5, 2018: Why Am I Confused?

One year ago today, while G and H were at school, I tried to talk to Matt about his latest MRI and the choices that the doctor left us to consider: surgery, Avastin, or wait and see. I tried, but I don’t think I got very far. A week earlier, attempting a conversation with Matt resulted in a snap of anger. It ended in hurt feelings and lingering bad tempers—both on my part and likely on Matt’s, as well. But by January 5, 2018, that steroid induced rage was gone and talking to Matt resulted in heartbreak, in deep breaths and pushed back tears.

Months earlier the Columbia doctor had warned me that Matt might not be capable of making nuanced decisions. Once again, her warning proved too true. Matt wanted to be as aggressive as possible, but as we spoke about the different options, it was hard to be sure he understood the risks and extent of the rewards. It was hard to be sure he remembered that—save for a miracle—Columbia had already taken a cure off the table and Duke had given up hope.

As we spoke, as I spoke, really, Matt stopped me to ask questions. I’d answer, and he’d furrow his brow, tilt his head, and ask, “Why am I so confused?”

My memory of the first few weeks of January is dominated by that question: why am I so confused. I remember how Matt looked at me as he asked, with an innocence and an earnestness that simply tore me apart. Sometimes I’d tell him it was the tumor and we (the doctors and I) were doing our best to fix it. Sometimes the heartache would be too overwhelming and I’d simply say, “I don’t know, love.” Sometimes he’d nod, sometimes he’d look worried, sometimes he’d just accept that there was nothing else to say.

One year ago today, I ordered a cane from a medical supply company. Matt’s unsteadiness—a result of decreased muscle mass due to the steroids or increased tumor or both—had become more pronounced and more worrisome with each passing day. We could no longer ignore that he was a fall risk.

I remember when Matt was first diagnosed, when we sat on the far side of the waiting room at Hackensack and looked across the room at all the other brain cancer patients. We noted the missing patches of hair, the limps, the wheelchairs, the canes. We couldn’t imagine that within the space of eighteen months, we’d be the patients across the room. We couldn’t imagine our story would follow that too familiar brain cancer path. Maybe that was naive. But maybe also brave. Maybe it’s brave to come face-to-face with a likely inevitable nightmare and decide to stand up and fight with all your heart and soul, anyway, for that one in a million chance.

When I told Matt about the cane, he rejected the idea. I wasn’t surprised. I hadn’t even mentioned the idea of a cane to him until I received shipping confirmation because I knew how much he’d hate the idea, how much he didn’t want anything to do with a cane—tangible evidence that he couldn’t do the things he once did without help.

That night, I found Matt lying on the floor beside our bed. I remember the way my heart dropped as I saw him. I remember the confusion I felt when I called his name and he answered calmly, as if it was perfectly normal to be curled up on the floor. When I asked Matt if he’d fallen, he said he hadn’t. When I asked why he was on the floor, he said he didn’t know. To this day, I don’t know if Matt fell or curled up on the floor for reasons I can’t begin to imagine. I know only that he wasn’t hurt or scared. I know only that he somewhat laughed at himself as I helped him to stand and then he fell asleep on top of the covers in his clothes.

I know only that Matt wanted to keep fighting and he trusted me to define that fight, to weigh the risks and rewards when he couldn’t, to carve our path forward. I know only that Matt didn’t complain that he was confused or unsteady. He didn’t complain once, choosing instead to believe in our power to create miracles, to ground hope into conviction, to soar when the ground had all but given way.

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