A few days ago, I wrote that we emailed our doctor at Duke a list of questions we wanted answered before Matt officially started with the course of treatment they suggested. What I did not say was that we labored over that email. I drafted questions and emailed them to Matt. He responded with notes: what to cut out, what to add, what to rephrase. We sent half a dozen drafts to each other in the hours after we met with Hackensack, and finally landed on five questions we thought would clear out the lingering confusion we’d been left with after July 3rd. The answer to these five questions, we hoped, would make it feel less like the ground was about to give way beneath us.
Four days after we sent the email to Duke, we received an answer. At 10:33 a.m., on July 10, 2017, the doctor at Duke responded to our five questions.
My text message to Matt reminds me that I was driving when I received the alert on my phone that I had a new email. I couldn’t wait a second longer. I pulled over to the side of the road to read the Duke doctor’s answers. And I remember, after reading and re-reading the doctor’s extremely hope-filled and positive responses, being left with a sense of disappointment. Disappointment in the response, which was made up of a lot of words but not a lot of context, and disappointment in myself, because somehow despite all those drafts, I must not have asked the right questions to elicit actual answers.
All the questions were critical, but this one stands out in memory. Have other patients who received the polio virus infusion developed tumors in new areas? Were they treated with CCNU? How did they do?
The doctor’s answer: Yes, and they did great.
Somehow, we didn’t feel reassured by the answer. Somehow, the ground didn’t feel any more stable. Somehow, we believed the answer to that question required more than five words.
One year ago today, I did not question Duke’s motives. (That part comes many months later.) But I can’t write about this day, with all the benefit of hindsight, and not start to question those motives now, start to analyze whether Duke was acting in the best interest of Matt, their actual patient, or for the benefit of their famous clinical trial when the doctor responded with five words. I can’t help but start to wonder, knowing what I know, whether Duke was so blinded by their own hopeful search for a cure that they couldn’t distinguish between the patient and the treatment. It’s question and an analysis that will arise frequently.
I’m struggling with what to say next, how to write my feelings about the answers to this email without villainizing anyone, if only because I want the story to speak for itself. But as I said yesterday, I am the unreliable narrator, and I do get to pick and choose what I show, and I am showing this question and this five word response that hardly qualified as an answer.
I think, for now, simply showing is enough because the truth is, we didn’t push for more words or more context. We let that answer guide our hope for the next few weeks.
In post-hope, with the benefit of hindsight, I understand the disappointment in myself better, too. We’d asked five questions, but I could have asked five thousand and still have felt disappointed in the answer. I didn’t yet know, on July 10, 2017, how to phrase the question nagging at my thoughts. I wasn’t yet ready to admit that the question I most wanted to ask might have an answer I didn’t want to hear.
Because, I think, the question I was to afraid to put into thought or words was: what’s going to happen? Are you truly sure poliovirus is working for Matt? How has this third tumor changed Matt’s prognosis? Will the treatment you suggested still give him that magical timeline you promised all the way back in 2016, when you said Matt will see his kids graduate high school?
What I wanted to say was: I cannot imagine a scenario where Matt isn’t here, so will your treatment keep him here?
I don’t know if it was fear that kept us from asking the questions, forming words out of that vague, unsettled anxiety lingering after July 3rd, or something else. All I know for sure is that the answer wouldn’t have mattered; we would have always found another reason to be hopeful. It’s what we did, every time. The only option was to keep fighting and living and looking for a glimmer of hope in the darkness, whether we turned that darkness into fully formed questions or not.