November 30, 2017: Three Hundred Days

One year ago today, Matt started whole brain radiation in an effort to treat, or stall, or slow the growth of a tumor that had spread all throughout his brain. It was the first time he’d done anything to treat or stall or slow of the growth of his disease since September 6th, when he had his last Avastin infusion. Everything that we’d done since September 6th had been an effort to treat or understand symptoms.

Why the two month pause in treatment? It’s a question I asked myself often when Post Hope started, when I began this project and outlined our year. The answer is two fold. One, Matt wasn’t strong enough to undergo treatment. After the shunt surgery, his body and mind had been too weak for treatment—surgery or chemotherapy or otherwise. And two, we (Matt, me, the doctors) didn’t know what to do next. We’d discussed brain surgery to remove the tumor in the left parietal lobe. We’d considered a chemotherapy or two. But we wanted to understand how the lesions on Matt’s spine and ribs, the glowing yellow PET scan, fit into the picture before rushing forward into a plan. Matt’s disease moved faster than any of us could have predicted.

So, the what ifs pour in. What if we hadn’t spent time on PET scans and bone marrow biopsies and thyroid biopsies? What if we’d scheduled a surgery to remove the tumor for the end of October? Would the ending of our story have changed? The truth is that I don’t know, but I don’t think so. Because I know how our story ends. I know the final, heartbreaking plot twist. The better question is would our third act have been different? Could we have avoided some of the heartache? The truth is, again, that I don’t know. Maybe. Maybe it would have been an easier third act. Maybe harder.

We arrived at Columbia a bit late (thanks to a surprise traffic jam) and took the elevator down to the basement floor of the building which housed the radiation machines. We checked in and waited, surrounded by other patients, some who were alone, some who were accompanied by a friend or family member. We did not feel young and naive. We were worn and weary, maybe a little jaded, but full of hope.

We didn’t have to wait long before Matt’s name was called. He waved goodbye to me and followed the nurse into the back room where family and friends weren’t allowed. I don’t know how he felt when he saw the radiation machine, when he saw the mask—the plastic mold of his face that attached to the table to ensure that his head was in exactly the same position from day-to-day. Frustration or defeat, or, maybe, hopefully, determination.

Today marks 300 days in Post Hope. As with all the milestones we’ve hit in Post Hope, three hundred days feels like a lifetime and a heartbeat. For the last three hundred days I’ve found comfort by spending time in the past, sometimes tunneling so deep into the past that I can’t keep track of the days in the present. For the last three hundred days, I’ve found comfort in keeping everything–down to the half-full (never half-empty) Poland Spring bottle on Matt’s nightstand–exactly as it was when Matt walked out of the house on January 15th.

It’s what I needed to do to survive three hundred days in Post Hope. It’s what I need to do to survive. But I recognize, have always recognized, that one day I may need to do more than survive. I suspect the real Matt (pre-GBM Matt) might have wanted me to do more than simply survive.

I’m not ready to do more than survive. Not yet. It hurts a little too much to do more than survive. But yesterday, on the heels of two exciting new opportunities, after hours of internal debate, I put Matt’s Poland Spring bottle into the recycling bin, telling myself it doesn’t mean I love him any less. It means that I’m surviving, and maybe, hopefully, eventually thriving.

2 thoughts on “November 30, 2017: Three Hundred Days

  1. What an amazingly brave thing that you were able to recycle the water bottle & use this story of post hope to move forward! I’m so in awe of your strength!!


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