These May days seemed relatively normal, and it was somewhat easy to put anything cancer related out of our minds and focus on everything else, but we were actually on a deadline and the clock was ticking. On May 9th, 2017, one week had already passed since Matt’s first Avastin infusion. That meant he had two more weeks with relatively no wiggle room until he needed his next dose. We needed a local doctor.
We turned our attention to Hackensack and the doctor who treated Matt when he was first diagnosed, the same one we’d chosen over the doctor at Sloan because of his positive outlook back in 2016.
When I started looking back through emails from this date, I ended up routed back to February 2017, to a few weeks before Matt’s second tumor appeared on a MRI. At that point, Matt had been on Temodar, the standard chemotherapy used for treating Glioblastoma for 6 cycles, and we had a decision to make. Hackensack recommended that Matt stop Temodar. Duke wanted him to continue for another six months. They each emailed Matt with compelling reasons to follow their recommendation, but we were Team Duke from the beginning. We walked into the appointment with Hackensack ready to follow Duke’s decision. Mostly, because Duke is one of the top brain cancer centers; they had a possible cure sitting in their labs and a Sixty Minutes special shining a light above them. Ultimately, none of it mattered because the decision to stop Temodar was made for us by Matt’s aggressive tumor.
If this story was fiction, I’d call that scene foreshadowing. Because looking back, this pattern, this cycle of events, replayed again and again.
In May, with respect to Avastin, the drug that had brought Matt back to himself, it didn’t even occur to us there’d be any conflict between Hackensack and Duke. But when we spoke to Hackensack about administering Avastin based on Duke’s orders, we didn’t get an easy yes over the phone. The doctor at Hackensack had some concerns about our plans (remember, Avastin may have worked a miracle, but it was still a dangerous path to go down) and he needed to see Matt in person and speak to the doctor at Duke. We gave Hackensack the contact information for Duke and set a date for an appointment next week, the first Hackensack had available. That clock was ticking.
The story gets tricky to tell here and I’m struggling with the best way to frame it without making anyone seem like the villain. I do believe the only villain was and is cancer, but if you’d asked me in the moment, I might have had something less generous to say. The truth is, despite the disagreements and the delays and the frustrations, everyone in this story had a version of the same goal. The problem was that neither Matt nor I realized when we made the decisions that we did, that a version of the same goal was not the same thing as the exact same goal. And if you’re not working on the exact same goal…
I really will do my best to tell these parts of the story without judgment, but I’m sure some will creep in because I can only speak my version of the truth. I can only tell the story the way I perceived it, through my lens with all its flaws and delusions and stubborn refusal to release hope. If this story was fiction, I could be called the unreliable narrator.