As it turns out, I couldn’t simply go along with my day on August 24, 2017 without hearing about that latest MRI, even knowing that likely nothing had changed.
I spoke to the radiation oncologist who confirmed that there’d been no significant growth in either tumor. She mentioned that even a millimeter of growth could cause a change in symptoms, and likely that was the cause of the double vision. She urged me to call Matt’s neuro-oncologist at Duke and confirm with her what to do next, if anything.
Around 9:45 a.m., I texted Matt the highlights of that conversation. An hour later, I hadn’t heard back and texted him again to make sure he was fine with me nudging his doctors on this issue. He responded with this: I got a brain tumor floating around. We are going to duke in like 5 days. Just took Avastin yesterday. In a week we will be there [back at Duke]. I’m 100% fine today. For all I know I might be able to drive now just playing it safe. I’m not seeing double when I look or talk to someone. Let the medicine work. But I don’t want to ever tell you not to do something so if you would feel better emailing or calling them, then go for it.
In our pre-hope life, Matt would have added the words “same team”—his way of reminding me that we may disagree about the means, but our end goals were always the same.
In looking back, there’s no question that we should have been calling the nurse and the doctors. Calling, emailing, pounding on doors for their attention. But in the moment, the decision was more nuanced. The MRI hadn’t changed in a week, but Matt had. The doctors had just seen him, but they’d let him fly home, told him to enjoy his few days of vacation and come back in a week. If I called and emailed and shouted about Matt’s symptoms too loudly, I was breaking from Matt’s view that everything was under control—and I couldn’t do that. Matt knew best, didn’t he? He was the lead in his story; I was the supportive sidekick. Also, if I shouted too loudly—if I was the one voice shouting when all the voices who knew better seemed so rational and calm—I’d risk looking like the hysterical wife and would lose credibility when it mattered. Like the boy who cried wolf. And yet—
I did call and email the nurse, but stopped short of pounding on the door for attention. (That’s next week.) And I did so exactly for the reason Matt suggested—to make myself feel better. It made me feel less alone to imagine the nurses and doctors reviewing Matt’s symptoms, spotting details I’d missed, ignoring details I’d blown out of proportion. It made me feel better to think they were on my team, to believe they were as anxious about every new change as I was, and to know they were there as a second line of defense if I wasn’t quick enough to spot the symptom that would change the shape of our fight again.
The nurse called me back at the end of the day. I was busy with G and H and missed the call. (Obviously I was supremely angry with myself for missing that call.) When I called back, she’d already left the office for the evening. I emailed her letting her know I’d call in the morning, and typed out what I wanted to discuss. I wanted it in writing so that I didn’t miss anything on the phone.
By evening, Matt’s back and neck pain had become so severe he could barely move his neck from side to side.
One year ago, Matt and I disagreed on whether to call the nurse, and I didn’t take his lead as I had so many times in the past. That renegotiating relationships I introduced to the story begins taking root and sending spiderweb thin cracks through the solid foundation of our marriage.
The story of today is not to pat myself on the back—the emails and phone calls over the next few days did nothing to impact the days and weeks ahead. The heart of today’s post is the realization that the story is going to start to split. Up until now, most of the time, the story has been ours, mine and Matt’s. After today (more or less), the story I can tell is mostly only mine. The things Matt and I left unsaid, the cruelty of brain cancer, all of it came together to try and divide us.
The story of today sounds suspiciously like heartbreak, but the story of today isn’t heartbreak. Our story split, but that didn’t mean we were divided. How could we be divided when our hope was unbreakable, when we remained, simply, on the same team fighting for the same thing?
And that same thing–nothing less than a cure.
One year ago today, despite it all, our eyes were still locked on that very, very highest star in that interminable darkness.