July 7, 2017: Decisions

Yesterday I wrote that we had three opinions from three different institutions and we had to make a choice. That wasn’t quite true.

We dismissed Columbia’s plan first. When we agreed to start Avastin all those weeks ago, we knew we were closing the door on any surgical options. Avastin is associated with a dangerous bleeding risk and patients need to be off Avastin for four weeks before surgery. In order to go through with Columbia’s plan, Matt would have to stop Avastin.

But we were too afraid to stop the Avastin for four long weeks. What if the swelling in his brain returned without the Avastin to hold it at bay? We couldn’t risk Matt’s cognitive state deteriorating again. On July 7, 2017, the worst thing we could imagine was returning to those bad days in April.

As a result, we turned down Columbia’s plan. Which is significant for this reason: Avastin. That black box drug that I swore in 2016 Matt would never take, that black box drug that had been pitched to us as nothing more than a stronger steroid, had forced a door closed on us. Maybe surgery would have been the best option, but it wasn’t even a consideration. We were in the exact scenario Hackensack had warned us about back in May, when they disagreed with Duke about starting the Avastin at all.

As for Hackensack, I foreshadowed this moment in a post in May. (That pattern: Duke and Hackensack disagree, we choose Duke, the cancer creates a plan of its own.) Once Columbia confirmed the treatment Duke suggested wouldn’t be dangerous, we turned down Hackensack’s plan. We believed they just didn’t know about poliovirus. We believed Hackensack wasn’t privy to all the miraculous results Duke was seeing from the other poliovirus patients, and couldn’t advise, not in any real way. The implication there: the poliovirus was leaps and bounds better than any treatment Hackensack had ever seen, and the doctors at Hackensack simply couldn’t fit their experience around this unparalleled cure.

But it wasn’t just that Hackensack couldn’t advise on poliovirus because they didn’t have the experience with the experimental treatment, it was also that Hackensack had moved away from hope. The hopeless subtext in their treatment plan was clear. And as I’ve said before, we never listened to anyone who didn’t have hope. We always turned away from the doctor who didn’t believe that Matt had a long future in front of him. Always. With a conviction that now seems slightly naive, but mostly, incredibly fearless.

We did agree with Hackensack that we needed more answers from Duke. We had walked away from the Duke appointment completely off balance, needing more information, but having no idea how to phrase the questions we wanted to ask. We emailed the Duke doctor after the appointment with Hackensack. As of July 7, 2017, a day later, we had heard nothing in response to our email.

That afternoon, I came home to a FedEx delivery slip on the front door. FedEx had tried to deliver a package that required a signature and nobody had been present. We had believed, up until then, that we’d have to go to a special pharmacy to pick up the chemotherapy when it was ready, so we weren’t waiting for a FedEx delivery. Nobody had told us the chemotherapy pill was coming by FedEx that day and required a signature. Nobody had told us anything, at all. If I’d been looking for patterns then, I would have noted this moment, this day, when we were terrified and confused and lost, and waiting endlessly for a phone call from the doctor that was supposed to save us.

As of July 7, 2017, we hadn’t officially committed to Duke’s treatment plan. We wanted to wait to hear the answers to our questions before Matt took that chemo pill, but, the choice had been almost obvious. For this reason:

Columbia and Hackensack had used the words “quality of life” when discussing Matt’s options. The minute those words were spoken, Matt and I stopped listening. We never wanted to hear “quality of life” because that phrase meant a shift in priorities. And, we weren’t ready to shift anything. We weren’t ready to give up the dream of a cancer free life that had captured us the moment we saw the poliovirus segment on 60 Minutes. Anyone who spoke those words to us was, at best, uninformed about Matt’s amazing brain, and at worst, the new villain in our story.




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