September 14, 2017: High Expectations

Early in the morning on September 14, 2017, I received a call from the hospital. There was some confusion over whether Matt had a new secondary bleed and whether another tumor had been found. I panicked, left my mom to get G and H off to school, and raced to the hospital.

Or, rather, I wanted to race to the hospital. The heavy rush hour traffic had different plans for me. I crawled to the hospital, the twenty minute driving taking just longer than an hour. When I arrived, anxious, terrified, and so, so overcome by road rage, I found Matt still sleeping, all but unconscious. The nurses told me he’d just had a MRI and was receiving pain medication via IV. We agreed he didn’t seem to be currently in pain.

I set my things down in the chair beside a sleeping Matt and went in search of the doctor in charge of Matt’s case. I learned that there was no new bleed, no new tumor, and there’d simply been some confusion because the recent CT scan had been compared to a MRI from June 2016. On top of road rage, I added outrage rage.

After speaking with the doctor, I texted a friend and wrote: I spoke to the doctor this morning but I feel like he doesn’t know what he ‘s talking about—yep I’m at the point where I think I know more than the neurology doctor.

In truth, I didn’t know more than the neurologist (obviously), but I did know more about Matt’s specific case. I was an expert in Matt and, whether fair or not, I expected the doctors treating him to be experts in him, too. They didn’t need to memorize his medical history like I had—that selective photographic memory came in handy—but I did expect them to review his file, to not ask me the same questions and force me to repeat the same warnings. (Matt often teased me for always having high expectations of people. No shame.)

I went back to Matt’s room and sat beside him while he slept on and on. I spent the hours texting updates to friends and family, calling Duke, and keeping Columbia in the loop. I learned that hospital time doesn’t pass like normal time. The minutes drag on while the hours seem to pass too fast.

At some point, the palliative care doctor arrived. She walked into Matt’s room and slid closed the glass door dividing us from the rest of the Intensive Care Unit. She brought two chairs together and, with a furtive glance at Matt’s all but unconscious form, gestured for me to sit. She explained to me the purpose of palliative care and what her role at the hospital entailed. She told me that Matt’s disease and current state were serious and that I needed to start considering…things I hadn’t yet wanted to consider. She used words that, even in Post Hope, I don’t want to hear (or see typed out). Not this early in the story, anyway.

I took her business card, thanked her, and with all the kindness I could muster with the beeping of the machines monitoring Matt’s vitals in the background, told her we didn’t need palliative care or hospice. I told her, my voice shaking, that we didn’t even have the results of this MRI. I told her that she didn’t know the potential of the poliovirus, the optimism in every Duke phone call. I told her that she simply didn’t know Matt. She didn’t know how much he’d already overcome, and how much strength he had to fight.

She left (probably thinking I was delusional) and I paced and fumed.

The theme of this day was rage. It was an easier emotion than the alternative, which was simply despair.

Looking back on the first of the September hospital stays (there will be three more), I see that these were the days when I was forced to learn to live without Matt. I couldn’t consult with him on decisions—for himself, the house, or the kids. He couldn’t call me before he went to bed or when he woke up in the morning. We couldn’t talk or laugh or tease at all.

One year ago today, I had no reason to hope. A doctor had walked in and all but told me to stop hoping. But I didn’t. I looked at Matt and thought of every day we’d spent together, every moment when we’d faced that darkness together, and I knew we had so much more story left together.

I was right.

I mentioned, in a post early on, that our story was full of down cycles and upswings, and noted that the upswings sometimes arrived breathtakingly fast, though they’d never reach quite as high as before. I was right when I told the palliative care doctor that she didn’t know Matt, that we weren’t ready to use the words she used. Matt had a lot more fight left, more down cycles, but also more upswings. We had so much hope left.

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