A year ago today, I finished a final revision of my then latest manuscript. I typed “the end” and sent it directly to Matt. Slightly off or not, in the clutches of a slow descent or plateaued, his opinion was the one I still sought out first and trusted the most. He responded that he’d print and read it during our family’s annual end of summer trip to the shore—that promise turned out to be too hard to keep; by the time we arrived at the shore, Matt’s vision was too impaired to read long passages.
Matt and I texted a few more times throughout the day. The nature of the text messages one year ago today is different than in the days prior. I can hear Matt’s humor in the words he typed. I can see his excitement in his use of exclamation points. The feel of the messages is simply the Matt who existed before brain cancer.
That’s the constant challenge of brain cancer, for the patient and the caregiver. The descent is slow, but not steady. The descent is complicated by peaks and blips and bursts of moments that make it easy to believe all the anxiety has been for nothing. One good day can erase a hundred bad days.
The story of the day is the way our days became unpredictable. One day was a nightmare and the next wasn’t so bad, and the only constant was that I woke up each morning not knowing what to expect. But it’ll be easier to show that particular cruelty of brain cancer later in this story, when the nightmare is more than a missed joke and a lightning fast headache.
Once again, I wasn’t sure what to write. That’s been the theme of the week. The daily commitment is proving to be more difficult than I imagined back in March. In my memory, our year was a whirlwind and every day brought a new development. My memory apparently glazed over so many days that were full of nothing but anxious waiting for a test or a result, pacing and overanalyzing and finding ways to keep busy as our world slowly changed around us.
I considered publishing this post at 214 words, after the line about a hundred bad days. 214 is initially about the length I envisioned for each post, anyway— and fun fact: 214 is my favorite number and, coincidentally, the exact number of guests at our wedding—but 214 words wouldn’t have done justice to August 10, 2017. Because August 10, 2017 is an example of a day outlined with quiet hope. Even as the world was falling apart around us, we allowed a single bright moment to erase all the uncertainty of the days before. That single moment became the norm, everything else was the exception.
As the story tends to the darker and I write about vision changes and personality changes, heartbreaks and fears, that’s the fact to never forget. The moment was dark, but the future, we hoped, was always brighter. The darkness was always the exception, never the rule.