June 2: Progress

One year ago today, on June 2, 2017, Matt and I walked into a building, rode up an elevator, and stepped into a waiting room that would become as familiar to us as our own home. And the strange thing is that I don’t remember that moment or most of the major moments of this day.

Here is the story I can tell only through text messages, pictures, and assumptions based on a collective set of experiences. That morning, I brought G to the bus stop, dressed in her field day best, and drove H to his school. I snuck in a run to burn the edge off the building anxiety before I had to pick up Matt at the office at 11:15. We arrived at Columbia, checked in, and sat in a waiting room with one window and a dozen chairs arranged in a “L” shape facing a fussy Keurig and a basket of individually packaged snacks.

A nurse showed us into an exam room and took Matt’s blood pressure, height, weight, and temperature. When the doctor entered and asked why we’d come in, Matt launched into his version of his diagnosis story, his slightly exaggerated, sometimes blatantly incorrect story, that always went on ten minutes too long and never failed to include the fact that he was wearing a kilt the Saturday before he was diagnosed. (I often wished Matt would stick to the facts of his diagnosis story, skip the colorful details and flourishes and focus on what the doctors needed to know, but he never did. Looking back, I think he just wanted control of his narrative and to maybe, make a stranger smile around all the sharp edges. Now I think, who can blame him?)

The doctor examined Matt, checked his motor skills and memory and cognition and I’m sure I held my breath as Matt passed each test with flying colors.

By the end of the afternoon, the doctor agreed to work with us and Duke. We walked out with an appointment for an Avastin infusion for the next week. Progress!

Here is what I do remember:

We made a snap judgment when the doctor walked in. She looked young and inexperienced. She looked like she couldn’t handle the story we were about to lay at her feet. I remember Matt and I walking out of the building and thinking the only reason she’d agreed to administer the Avastin was because she was so young and inexperienced. The subtext being that we’d become so jaded over the last month that we believed only a young and inexperienced doctor looking to build a practice, possibly develop a relationship with Duke—the top brain tumor center in the country—would agree to work with Duke and take on the risk that had scared Hackensack away.

Our snap judgment was wrong, as snap judgments tend to be. We soon learned the Columbia doctor wasn’t that young (a compliment that we thought she was!), she certainly wasn’t inexperienced, and we didn’t trick her into anything. In looking back, I think she understood what Hackensack and Sloan couldn’t: that we’d chosen a path we couldn’t detour from, that we needed Avastin to keep Matt from deteriorating, that we needed a partner. I think maybe she saw a young couple determined to beat a nearly unbeatable disease, and she was willing to take a risk with us.

And even though most of the day is lost in my memory, this I couldn’t forget: we’d found someone who was willing to be on our team.

IMG_0746

Part of a joke or conversation we had in the car after the appointment. A year later, I cannot remember what we were talking about.

2 thoughts on “June 2: Progress

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