December 27, 2017: Decisions, Choices, and Possibilities

One year ago today, we returned to Columbia so much earlier than we had expected. I don’t remember very much about this particular appointment. Thanks to text messages I sent to friends after the fact, I know a few things: we arrived fifteen minutes late due to traffic on the George Washington Bridge; the doctor agreed Matt had experienced severe changes in his cognition and processing and it was unlikely those changes were a result of swelling from the whole brain radiation; and Matt didn’t know what year it was, even after a hint. Even after a bigger hint.

Months ago, in April, I wrote that Matt—in the throes of poliovirus induced swelling—had trouble remembering three words: apple, penny, and table. I wrote that I couldn’t believe the doctors and nurses weren’t panicked about his poor memory. I wrote I didn’t know that the questions could and would get easier, that Matt could and would do worse, that I’d wish for days during which he struggled to remember an arbitrary word.

On December 27, 2017, the resident who arrived to complete Matt’s initial cognition exam did not ask Matt to remember a grocery list of items. She did not test his long term memory with the words apple, penny, and table. Instead, she asked him his name. His date of birth. All correct. Answered without hesitation. Of course. Of course he knew his name and date of birth. His cognition was suffering, his reality was warped, but of course he knew his name and date of birth. The resident then asked Matt the year. Again, I expected him to answer correctly, without hesitation. Of course he knew the year. He didn’t.

He stammered and thought about it. Then answered. 1977. The doctor gave him a hint. He tried again. 2001. The resident told him the new year was just a few days away. He shook his head. He simply didn’t know the answer.

And I’m not sure how to describe that feeling. The combination of shock and terror and pure disbelief that accompanies the realization that your husband doesn’t know the year. That Matt’s amazing brain had fooled me—I knew he wasn’t okay, but I still assumed even his warped reality was informed by a set of basic facts.

In retrospect, maybe I shouldn’t have been so surprised. Our morning had been impossible. For the first time, Matt had needed help getting dressed and lashed out when I tried to put a shirt on over his head—because he’d asked for pants, which he was already wearing. By the time I’d made my way downstairs to make breakfast for G and H, my energy—mental, physical, and emotional—had been depleted.

The doctor ordered a MRI for Matt and discussed starting Avastin infusions again (that black box drug that I’d vowed Matt would never start in the first place), assuming the MRI didn’t show any new hemorrhages. We agreed to begin tapering the Dexamethasone, as originally planned, in the hope of decreasing some of the pain in Matt’s joints and weakness in his legs. The doctor warned that his cognition would get worse, but maybe decreasing the Dex would make him steady—keep him safe.

One year ago today, there were no easy decisions. Avastin was dangerous and caused so many problems, but it had also brought Matt back within twenty-four hours once before. Dexamethasone created weakness in Matt’s joints, but it kept us from spiraling down even further.

And I remember, at the end of the appointment, at the end of the day, I found comfort in this fact: we had decisions to make. Because decisions, to me, meant choices. And choices meant possibilities. And possibilities meant hope.

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