I don’t remember much from June 24, 2017. Matt and I left G and H with a babysitter and went out at night, but nothing in the texts or emails from this day helps remind me whether Matt was reluctant to go or whether he was looking forward to going, knowing we were only seeing a small group of friends. Our text messages don’t help me remember whether he had fun or he felt out of place. But I do remember being acutely aware of the calendar, and the fact that in nine days we’d be at Duke. I was anxious about the upcoming MRI, of course, but more than that I wanted someone with a medical degree to look at Matt, exam him, and tell me everything was fine. Because then I could stop overanalyzing Matt, I could stop giving in to that pinch of worry.
On June 24, 2017, all I wanted was to get to Duke so a doctor could look at Matt—really look at him, the way I did—and calm my growing anxiety.
In retrospect, that was too much to ask for. With brain cancer, sometimes the changes are too subtle to be picked up on by a stranger in a twenty minute appointment. Even a stranger with a medical degree and a specialty in neuro-oncology. Sometimes, the initial symptoms that could signal something is wrong are so tiny, so minor, they are all but invisible.
I started to write the symptoms were invisible unless you shared a life together, but that’s not quite true. They were invisible to me, too. I could not tell, on June 24, 2017 whether Matt was slightly off or I was slightly (thoroughly) overdramatic. And this internal conflict raged throughout Matt’s battle. Even months later. I spent just as much time questioning my own instincts as I did Matt’s actions. I often equated living and loving a Glioblastoma patient with the ultimate form of involuntary gaslighting (and I’ll explain that in a few months when it appears more prominently).
A year earlier, on June 24, 2016, Matt and I spent the day focused on a task that should have taken up the time of one phone call, but ended up consuming our day.
The well-respected doctor at Duke had told us to get a new MRI; he’d given us an instruction and hung up. We understood that meant it was up to us to figure out how to make this MRI happen. We called Duke, the main line and every other phone number we’d gathered via that extended network, and asked them for a prescription for the test their own doctor had ordered. They told us to ask our local oncologist. Not particularly helpful since we didn’t have a local oncologist, yet. Not officially, anyway. (Hence the phone calls to Duke.) We asked Hackensack to write Matt a prescription for another MRI. Hackensack told us that if Duke wanted Matt to get a MRI, then Duke should write the prescription. Which is not particularly helpful, and a little catty.
On May 9th, I wrote about foreshadowing. I wrote that the pattern of Hackensack and Duke clashing repeated frequently after the initial disagreement over whether or not to continue Temodar. As it turns out, I was wrong. The actual first clash between Hackensack and Duke came much earlier than I had remembered. (And therein lies the problem with imperfect memories and not planning blog posts in advance; I forgot about this early squabble between Hackensack and Duke until today.)
On June 24, 2016, we needed a simple MRI and all those who could give us access to a MRI, who could have helped us speed up the decision making process, pointed us to someone else.
Two years ago today, we went to bed without a prescription for a MRI. One day closer to needing treatment, not even a moment closer to making a decision. And all we wanted was somebody on our team.
In retrospect, that was not too much to ask for.
When I refer to our year in hope as a battle, these are the days I think of. The days we looked to the doctors to fight for us, but for whatever reason, they couldn’t. And we had to find a way to scrape and pull ourselves through to the next day on our own. We had to help ourselves.