And now a return to the main storyline.
At 12:08 on May 17, 2017 I sent this text message to Matt: How are you?
Earlier that morning I had dropped H off at a friend’s house and met Matt at Hackensack. He was already in one of the smaller exam rooms when I arrived. We weren’t there for an exam or test results or treatment plans. Very honestly, we were just there for protocol, to check off the correct boxes, to say we’d listened to the risks so we could sign our names on the dotted line and get pointed in the direction of the Avastin.
We had to wait a while. Annoying, because Matt had to get to work, but ultimately not surprising because the doctor was squeezing us into his undoubtedly jam-packed schedule.
I remember Matt and I were laughing about something when the doctor finally walked in. He took a seat across from Matt, diagonal to me, and proceeded to smash through the reality I’d built for myself, the one where Avastin’s long list of side effects didn’t really apply to us because Matt was only using Avastin as an uber-steroid, not as a treatment. He told us Avastin only made MRIs look better and that it concealed ugly truths. (Too complicated to explain but relevant to note for later.) He said if we chose to continue with Avastin, we’d likely close the door on any surgical options. He suggested surgery and/or another immunotherapy, Keytruda. We thanked him for his concern, but reminded him that we didn’t want a treatment, we wanted a cure. We wanted to be free of cancer forever.
His response was that he wasn’t even sure if we’d gotten the same dose that had cured the first patients.
At this point, I need to pause and explain something about Phase 1 clinical trials. Phase 1 clinical trials are dose finding studies. That means groups of patients receive different doses of a trial medication in an effort to determine the highest and lowest doses patients can tolerate without adverse side effects, while still receiving the benefits of the medication. The Polio trial was Phase 1.
The doctor at Hackensack wasn’t sure if Matt had received the dose that had cured people, or if possibly he’d been in a group that had received a slightly smaller dose. This is about the time my ears started ringing. Because of course Matt had gotten the dose that would cure him, right? He was in an experimental trial but he wasn’t an experiment, right? (This is also an idea I will come back to frequently, especially in the winter months.)
We did confirm later that afternoon that Matt had received the cure-delivering dose. PHEW! But it’s relevant that the Hackensack doctor didn’t know. Matt and I had given Hackensack Duke’s information a week ago. The doctor should know. He would have known, if Duke had called him back. Hackensack had tried to reach out but Duke never returned the call.
For all the reasons he cited, because he believed he’d be harming Matt if he gave the Avastin, the Hackensack doctor refused our request. He would not give Matt the drug needed to keep the swelling and bad days at bay. With less than a week until he needed an infusion, our local doctor, the man who’d first given us hope, refused to help, and threatened to demolish our carefully built world of hope in the process.
So when I texted Matt to ask how he was doing, shockingly, I wasn’t checking in on his physical health. I was checking in on his emotional wellbeing. Was he upset? Had he lost hope in polio? Was he at all having second thoughts about the path we’d chosen?
Matt’s response to my text message was: Fine. Wut’s up?
Unwavering, unfaltering, undiluted hope.