August 22, 2017: Double Vision

August 22, 2017 is the first time the text messages reveal a symptom that becomes crucial to the story. It appears in the story as a single question that I texted Matt at 10:07 a.m. You can drive right? No double vision for driving. He responded: I will see how I feel in 30-45 minutes but right now I’m okay.

In 30-45 minutes, Matt’s vision was still fine and he decided he could drive himself to the airport for his overnight at Duke. He missed the exit on the way to the airport. He nearly missed his flight because he didn’t hear the announcement that his plane was boarding. He’d forgotten to pack a couple of things that the pre-brain cancer Matt wouldn’t have forgotten.

Matt had traveled alone to Duke for overnight visits and same day in-and-out visits half a dozen times, and when we’d made the decision—just days prior—that he would travel solo for this trip, we were thinking of all those previous trips. We weren’t thinking of how much Matt’s physical and mental health could decline in just a few days. Despite all we’d been through, we were still unprepared for the swiftness and unpredictability of brain cancer.

When Matt landed and arrived at Duke, I remember breathing a sigh of relief. He was spending the day and the night and the next day in the hands of the very best brain cancer people in the world. They would see what I saw through expert eyes. Their level of worry after seeing what I’d been seeing at home would inform my level of worry. The rationale: if they weren’t worried after observing and listening and examining Matt, then I shouldn’t be worried.

That night, Matt completed blood work at Duke and received another dose of Avastin. Afterward, he emailed the doctor at Columbia.

Matt wrote: I decided to go back with Duke. They made a compelling case about why we can’t remove the tumor. I am going to get Avastin today at Duke and continue treatments tomorrow and then late next week. I will certainly keep you updated and look forward to seeing you soon. Thank you for your support and guidance.

The doctor responded with this: I understand completely. Yours is a complex case with no clear right or wrong. Please keep me posted.

I don’t know exactly when Matt’s double vision started, but after today “double vision” appears in the text messages Matt and I exchanged and in the emails we sent to Duke. Where it does not appear is in the correspondence with Columbia. Whether by oversight or because we believed Columbia wasn’t invested in Matt’s case (a wrong assumption) or because we’d told Duke and that was enough, we didn’t mention this new symptom to Columbia one year ago today.

The story of today is another step in the slow decline, but the devil is in the details of today’s post. Not only in the detail that we didn’t mention the double vision to Columbia, but also in the less important details that Matt scheduled his own appointment, he booked his own hotel room, and he talked to the doctors and understood their explanations. Over the next few days and weeks, these details become significant.

I’ve written before that, as the narrator, I control the direction and feel of the story; I can choose how to frame any particular day. I’ve also promised to show the light when I cannot soften the sharpest edges of this story. And so, as we enter into the razor tipped edges of the last week of August, it’s also important to note this: the day was not all missed exits and missed opportunities. There’s more in the text messages Matt and I exchanged than what I’ve shown in this post. There’s Matt’s good-natured realization that I spoke to his mom and together we’d made plans for him. There’s Matt affirmation that he felt 100% fine after he landed. And there’s always the hope. Between every text message, every smiley face emoji, and every earnest “how are you feeling?” there was always the unwavering belief that we’d defy the odds.

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