When I sat to write today’s post, I reviewed the text messages I sent to a friend describing the appointment Matt and I had with Hackensack on July 6, 2017, and I felt dizzy, overwhelmed even in retrospect, and slightly breathless. Patterns I’ve written about before re-emerge today. Old decisions come back to haunt us. Subtexts are presented and ignored. Some parts of this day I had remembered without the help of my messages, and some parts, I couldn’t believe I’d forgotten.
The previous day when Matt had called Hackensack, the doctor said he’d like to speak with him in person. Hackensack found space in their schedule to meet us at 1 p.m. We arrived at the appointment separately—Matt had gone to do a breathing test prior to the appointment in preparation for the new chemo—and I made it into the exam room first.
Matt arrived and cracked a joked about being the out-of-favor patients banished to the small exam room in the back corner. We waited. Not for long. Certainly not three hours, and shortly after Matt arrived, the doctor walked in along with a nurse.
If I was writing this as fiction, and if I consider Matt’s diagnosis as the inciting incident, and our decision to enroll in the poliovirus clinical trial as the first plot point (the point of no return, the point at which the story truly begins), then this is the midpoint, the point at which the story changes direction, a plot twist is revealed, allies betray, and the protagonists fully commit to the goal. If I was writing this as fiction, I would have known the battle only intensifies from here.
Hackensack was harsh. They said, in no uncertain terms, that the treatment Duke prescribed had no chance of working. CCNU, the chemotherapy Duke recommended, would not be effective. And (and!) not only would the CCNU be ineffective, but the treatment plan Duke had prescribed bordered on dangerous. Given the fact that Matt’s blood counts dropped while on chemotherapy in the past, the combination of CCNU and Avastin would hurt Matt more than it helped him. The doctor suggested we abandon hope that the poliovirus will begin working and start on a different immunotherapy. He also urged us to contact Duke, confront them with the concerns he’d raised for us, and push for answers.
No chance of working. Dangerous. Remember, we’d picked Hackensack over Sloan once before because Hackensack was full of hope. They were the ones who said Matt would be fine from the beginning. And now? Now, Hackensack was talking quality of life and looking at us like they knew something we didn’t. Everything was distorted.
We left the appointment and called Columbia, the tie breaker, the doctor who’d agreed to administer Avastin and was willing to do whatever it took to keep Matt healthy. She had an entirely different take on how to proceed. She didn’t think Duke’s idea was as dangerous as Hackensack seemed to believe, but, she said, before continuing with chemo, we should go to a neurosurgeon, pick the tumor most likely to cause problems, and remove it.
I’m struggling with how to condense the story of this day, explain why we ruled out certain options, closed our minds to others, and failed to see potential ulterior motives. I’m finding it impossible to write the twists and turns in a straightforward way, particularly with the added cruelty of hindsight. I almost want to copy and paste the text messages I sent and let the July 6, 2017 version of me explain. But, even those texts seem confusing. The day was simply a lot to process then, and now. So, for today, I won’t try to explain every option. I’ll save the explanations and rationales for the coming days. And I’ll simply end with this thought:
On July 6, 2017, we were faced with three wildly different treatment plans from three esteemed brain cancer institutions. What to do with three different opinions? I don’t know what the answer should be. I can only know what we did: we chose to recommit to the goal.
And remember, the goal was never anything less than a cure.