May 24, 2017: We

On May 24, 2017, we were back in that holding pattern we’d be in before Matt went to Duke. I mentioned yesterday that Matt had secured a promise from the clinical trial nurse that they would help us to find a local oncologist to administer the third (and we hoped, final) Avastin infusion.

But by the next day, we hadn’t heard a word from anyone at Duke. Not something to be especially alarmed about; it had only been twenty-four hours and we had three weeks until we needed another infusion. But we’d learned that no doctor would administer a drug as serious as Avastin without at least meeting the patient beforehand, which meant actually we needed time to fit in two appointments. One for a meeting, to create a baseline relationship, and a second for the actual infusion. We’d learned the hard way that three weeks crept up quickly.

So, after twenty-four hours we weren’t anxiously awaiting a phone call—Matt spent the day engaged in work drama, ranting and pacing about said work drama when he got home, and making plans to play tennis over the weekend—but we were paying attention to the passing silent hours.

Today is the kind of day where the storyteller in me wants to pick up the pace, throw in an action scene or skip to the plot twist on July 3 or October 8. I can’t do that. The story does move slowly here. May 24 was nothing more than paying attention to the fact that, once again, we’d heard nothing from Duke when we had hoped to hear something.

This is why everyday life doesn’t really make for a great novel. One day isn’t all that different from the next. Stories move forward in micro-bursts and most days don’t look all that different from the day before. Until they do, and then you find yourself looking back nostalgically on all those monotonous days when the story was mostly stagnant.

A few people have asked me if it’s hard to look back on these days when we had every reason to believe everything would be fine. I’ve said before that these days are hard to write because they are not the days that fill my thoughts most nights. Sometimes, it’s hard to think of something to say about a random day in May. But otherwise, it’s not hard to look back on the easy days which are nothing more than vague memories. There’s a quiet joy in re-reading our texts and emails and noting how everything was “we”. We needed another infusion. We had an appointment. We could use .5mg Dex pills so we had flexibility in adhering to the new tapering schedule.

Because at some point, that “we” vanished. It became, “Matt has an appointment,” or “Matt needs bloodwork.”

I remember when I realized I’d shifted away from saying “we have an appointment” and I remember being horrified with my betrayal. We were still fighting together, everyday, so how could I have stopped saying we?

Now, with the benefit of hindsight, I can understand why my language changed without me realizing it. We were still a “we”, but it was harder to convince myself that “we” were fighting for our lives when I got to go home every night and he was trapped by tubes and wires and machines in the hospital. Hard, on the worst days, to convince myself that we were still a “we” at all when sometimes he looked at me like it was all my fault, when it felt like he was already gone and only the GBM was left.

Brain cancer shattered the “we” I used so casually in May with stunning speed. That’s the brutality of brain cancer, the unique horror that comes with this particular disease. The “we-s” are destroyed even before lives are lost.

So, even though revisiting May 24th does not make for a page-turning story pace, there’s something easy about remembering “we,” which was a word that was ripped away weeks and months before February 3.

Today’s post inspired by this email.

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