August 23, 2017: The Checklist

One year ago today, Matt met with the Gamma Knife radiation team at Duke, while I listened in on speaker phone. After the call I texted a friend and said I was impressed with the radiation oncologist we’d met. She was compassionate and knowledgeable and patient with Matt as he repeated his entire medical history to her, not failing to include all the details— that kilt. Afterward, Matt went to another MRI and then a simulation to determine the best placement of his body for the radiation beams.

Around noon, Matt left Duke. I asked if he’d gotten the results of the MRI and he said no. He didn’t expect them to even call with the results because he’d just had a MRI the week before. What could have changed in a week? I hoped the answer was nothing, but this tumor had snuck up on us too many times already. I told Matt that I’d like a live stream of exactly what was happening in his head at all times, if that was an option. He laughed and told me his flight was delayed due to bad weather.

When Matt finally landed, he fought through rush hour traffic to get home. I have a vague memory of Matt arriving home. His double vision had returned during the drive home. His headache returned. The pain in his neck and back had returned, grown even more severe.

The story of today is another last. That somewhat perilous drive home from the airport was the last time Matt drove a car. He stopped driving out of an abundance of caution. The double vision wasn’t constant yet, but we agreed driving with the risk of double vision returning at any moment was too dangerous.

The story of today is another first. The beginning of what Matt—affectionately and irritatedly—dubbed the Checklist. The beginning of the days when I’d ask Matt about each of his symptoms—headache, neck, back, vision—and assess whether any particular symptom seemed worse or better that day. The beginning of the days when I stopped hiding my concern from Matt. And also from G and H. They frequently began to chime in, asking me whether I’d done the Checklist yet, asking Matt whether he’d answered the questions on the Checklist. In the early days of the Checklist, before Dex made a comeback in our lives, he was a good sport about the Checklist and indulged his anxious wife.

Looking back on the first day of the Checklist, on Matt’s last day of driving, I cannot wrap my head around the idea that this was all only a year ago. Or that on this day one year ago, we had exactly five months left until January 23rd, the day the sky caught fire and my world came crashing down. Or that yesterday at 9:37 p.m., two hundred days had passed in Post-Hope. I spent the entire day trying to decide if it all still felt like a nightmare, whether I was still half in denial that all of it actually happened or whether reality had sunk in. At the end of a long day of allergists and dentists and dripping ice cream cones, I didn’t have an answer.

So, I did what Matt and I always did at the end of a long day. I read two books to G and H at bedtime, went through the good night rituals, and found a reason to hope.

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