Forty-eight hours had passed since our appointment at Hackensack and our deadline was creeping uncomfortably close. The morning of May 19, 2017, Matt gave up hope that Duke would convince Hackensack to administer the Avastin. As of 10:30 a.m., the two doctors hadn’t connected.
Matt emailed the clinical trial nurse at Duke and asked her to make him an appointment for Tuesday or Wednesday of next week. The clinical trial nurse wrote back in the early afternoon and agreed maybe it was time to schedule an appointment at Duke, “just in case there is continued push back from [Hackensack].”
I forewarned that the story gets tricky to tell, that there is no villain and that in many ways, I am an unreliable narrator, tainted as I am by judgments and perspectives, and now, retrospection. It’s the retrospection about these days that is tripping me up more than it has in other posts. I’m stumbling attempting to explain how we perceived the situation between Hackensack and Duke then, because I don’t know if I agree now. Hindsight and all that jazz.
Then, we believed we were the unlucky, forgotten patients caught between two big, clashing egos. It seemed to us that the Duke doctor couldn’t be bothered to call Hackensack. It seemed to us that the Hackensack doctor refused our request because he didn’t want to be Duke’s puppet, because he couldn’t see the bigger picture Duke was drawing and wasn’t willing to try.
Now, I can’t decide if I agree with our perception all those months ago. With respect to Duke, we knew we weren’t the only patients in the world. We knew the the doctor we were nonstop calling had back to back to back appointments and more patients than hours in the day. But we couldn’t help feeling abandoned. Was that fair? I still think yes, but I’m biased. With respect to Hackensack, knowing how spectacularly the polio virus would fail, knowing how Matt’s tumor would lash out and spread, was Hackensack right to try and steer us away from Avastin? Were we wrong to perceive ego in a doctor who maybe was simply being practical, who had seen patients like Matt and was trying to save us from walking toward a nightmare wearing a blindfold made of hope?
I’m going to end that line of questioning there, though I typed and deleted a dozen more similar questions. I said in my post on May 4th that I had made a choice not to question our decisions and I’m making that choice now. Because, I don’t know whether anything would have turned out differently if we’d gone the route suggested by Hackensack, and it’s not like I can go back in time anyway (especially since, despite my comparisons, this isn’t actually a YA fantasy novel.)
Matt went ahead and made the arrangements to fly to Duke on Tuesday of next week, though he still held onto hope that the doctor at Hackensack would change his mind after speaking to the doctor at Duke. That night, as far as we knew, the doctors hadn’t spoken.
On May 19, 2017, we were in the fight of our lives against a Goliath of a disease, and to us, it seemed as if the two doctors who were supposed to fight alongside us, had forgotten all about us.