June 28, 2017: Flashback #14…Wrapping up 2016

On June 28, 2017 our story is flat. We were on hold. Waiting for a flight to Duke and a MRI that surprised everyone. In advance of that MRI the doctor at Columbia wrote, “Given how good you are doing from a neurological perspective, I imagine it will be good….” (That amazing brain, again.)

A year ago today, I asked Matt whether he thought I should send my resume to a company looking to hire a part-time editor. He told me to do it. By the time I got the call for an interview, our world had flipped. I turned down the chance. Not relevant to today’s story in 2017, wildly relevant to post-hope.

On June 28, 2016, we had an 11:00 a.m. appointment at Hackensack and we set the date to start radiation. At Hackensack. Not at Morristown, where the radiation oncologist who I’d cast as the villain in our story worked and destroyed the hopes of her patients. Aside from that, I searched through the text messages and emails and photos and I could not figure out what we talked about during this appointment.

The methylation status was yet unknown. We could not sign up for a clinical trial without knowing whether Matt’s tumor was methylated or not. We could not move forward with Duke because Matt hadn’t even had his MRI appointment yet. I have no idea what we covered in the appointment. I can guess at how we felt—frustrated, anxious, a little desperate to act—but I don’t know for sure.

And after tomorrow, my records from 2016 become scarce. I don’t know the date we found out Matt’s methylation status. I don’t know when exactly Matt learned which trial arm he’d been sorted into. So I can guess at the dates, or I can start wrapping up the 2016 story and turn the focus back to 2017, back to the impact of a clinical trial only 60 other people received.

So, part 1 of wrapping up 2016: Shortly after this date two years ago, we learned Matt’s tumor was unmethylated. His tumor would not respond well to the standard of care treatment (Temodar + radiation). Because of his methylation status, he was disqualified from the trial we’d been aiming for, the one that combined the standard of care and Nivolumab. My memory fails me and I’m not sure if we were left with only one trial at Hackensack, or if we were steered toward only one trial at Hackensack. The trial Matt enrolled in, specific for unmethylated brain tumor patients, compared patients who received only the standard of care (Temodar + radiation) with patients who received radiation + Nivolumab. Patients were randomly sorted into one of these two arms. Matt was sorted into the arm that received only the standard of care.

I do remember the way my stomach dropped when we learned that Matt was sorted into the trial arm that received (only) the standard of care. I remember it so clearly because I was furious. For weeks—weeks!—the idea that unmethylated tumors do not respond to the standard of care treatment (particularly Temodar) had been drilled into our heads. It was the single, unequivocal fact we’d been told over and over. And suddenly, despite every attempt to get anything other than the standard of care, we were left with no other options.

A part of me thinks that even the doctors at Hackensack were blindsided by Matt’s methylation status. His amazing brain lulled them into the belief that he’d have all the best genetic markers. They backpedaled on their earlier commentary. They told us standard of care might be good for Matt, despite his methylation status, because he was young and healthy. They told us the standard of care still held promise for Matt.

His tumor came back within 8 months. The standard of care failed him miserably. And I think this might be one of the hardest parts of the story to come to terms with. Matt wanted a clinical trial drug, we fought for a drug with hope and promise, but because of rules and red tape and regulations, Matt was barred from receiving a drug that might have helped.

Only might have.

It was always a gamble.

When we were presented with the option of the poliovirus clinical trial, we knew that it was a gamble, too. We aimed for the highest possible prize along with 60 other people. We shot for the miracle.

When I re-read this post, I tried to decide if I was still angry that we were sorted into the standard of care arm of the clinical trial. That’s something I do often—check in with whether I’ve hit the anger portion of the stages of grief. I don’t think I have. (Or I’m in denial. One or the other.) But what I do know is I can’t be angry at us for shooting for the miracle and aiming for the highest prize and believing with all our hearts that we had a chance.

So not angry. Sad, obviously. But also…overwhelmed with love for that young hopeful couple we were, that kept going and believing.

7 thoughts on “June 28, 2017: Flashback #14…Wrapping up 2016

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