I’ve often compared this story to a novel. I’ve noted the first plot point and the midpoint. The story is now heading into the third act, which is preceded by the second plot point, the moment in the story when the last tidbit of information is exposed, when the protagonist is put on a straight road toward the villain.
One year ago today, Matt and I drove over the George Washington Bridge and headed to Columbia to meet with a doctor who was filling in for our usual neuro-oncologist to hear results nobody had wanted to share with us.
We didn’t wait long. The doctor arrived, opened the MRI results, and started speaking while pointing to places on Matt’s brain that showed tumor. And she didn’t stop speaking. Long after my own brain had stopped processing, stopped understanding what I was being shown. It took hours until the truth of what the doctor had said sunk in.
This post is difficult to write. I don’t know how to make this next part easier to read. My thoughts are still, apparently, largely jumbled. I stopped and started and deleted about a hundred sentences. The problem is that I don’t know where to start, how to share what the doctor told us and explain all the thoughts that collided at once. I debated skipping the details—maybe it doesn’t matter what the MRI showed. But, that didn’t feel right. To understand Matt’s strength, our hope, it’s important to understand exactly what we faced.
So, for today, I’ll stick to the facts and I’ll let the rest of the story–all the thoughts, feelings, theories–unfold in the ensuing days
On November 17th, I wrote this (blunt) text message to a friend who’d asked about the appointment:
The cancer has exploded. The tumor that had been infused with the poliovirus has grown—unchecked, apparently. And separate from that tumor, there are cancer cells throughout his brain: in the wrinkles, forming little nodules in more places than I could keep track, on some pituitary thing that’s blocking his vision, in the dorma—or whatever the lining is called between skull and brain. Basically, it’s widespread in the cerebral spinal fluid. The doctor said it’s something called leptomeningeal disease—a very rare condition in a GBM patient.
Rare, because GBM doesn’t spread. That’s what we’d been told. That was the premise under which we’d operated for more than a year.
We left the appointment stunned, terrified, and trapped in a world that seemed impossibly dark. Impossibly dark, but not hopeless. Before we left, the doctor offered us an option: whole brain radiation. It sounded terrifying. It was certainly a long shot. But the doctor believed it could be worth the effort. Because Matt had responded well to radiation twice—the first time in the summer of 2016, and the second time in September 2017, when Gamma Knife radiation (stereotactic radiosurgery) had made one of his tumors vanish within weeks. A tumor had vanished once before and maybe…
It was a chance, a glimmer of hope in a moment overcome by darkness.
It was that glimmer of hope that lit our way forward.