Glioblastoma (GBM) is a vicious cancer. The statistics don’t lie. Most people don’t survive five years. The numbers are bleak even for two year survivors. There are outliers though, people who for whatever reason survive ten years plus with no recurrence after the initial tumor was diagnosed and treated, or who survive despite suffering recurrence after recurrence. Those outliers are the reason we ever had a glimmer of hope. Some people survive. Some people get lucky. Some people are cured.
Matt’s cancer came back in February 2017, 8 months after his initial diagnosis. I wish I could say this was shockingly fast. It felt shockingly fast to us. But, in the grand scheme of GBM, 8 months is exactly the average time for a recurrence.
Matt made a decision then: he was done trying treatments (like surgery and immunotherapy) that would only prolong his life. He wanted more than a bandaid. He didn’t want to be in and out of MRIs and doctor appointments every few weeks for the rest of his life.
We had heard, back when Matt was initially diagnosed, about an incredible treatment at Duke that had been granted breakthrough status by the FDA. People had been cured. The medical world was excited. The results, so far, were stunning. People had been cured!
The theory behind Duke’s clinical trial is that a re-engineered polio virus (re-engineered to replace the deadly portion of polio with a bit of cold virus) would destroy the tumor from the inside out and (AND!) awaken Matt’s immune system to the presence of the cancer it never noticed before so the cancer couldn’t come back. A two-pronged attack.
This new, modified polio virus would be dripped straight into the tumor via a catheter inserted on the same day a biopsy was done to confirm that the tumor was, in fact, GBM. No major surgery required even. People were cured!
We were treated like celebrities by the nurses and receptionists at Duke, applauded and congratulated for gaining access into an exclusive club that everyone wanted in on but few were admitted. Matt and I joked about him making it on the next 60 Minutes documentary.
That was the first night I went to our hotel room by myself. Matt’s dad had already left to fly back home and, after I made sure Matt was settled, I called the hotel shuttle to come pick me up. This may sound insignificant but it felt momentous. Matt always called the shuttle. Matt made the small talk and charmed the driver. Matt made sure we didn’t eat cheese sticks and ginger ale from the hotel store for dinner.
It had been a day full of hope and jokes and smiles; the biopsy had been a piece-of-cake, no complications, easy-as-can-be procedure. But as I made my way from the elevator to our room, which was now just my room, and listened to the hollow silence where Matt’s voice should have been, the hallway seemed to stretch out a mile and I wasn’t sure I’d make it to my room. My legs felt suddenly too heavy to carry me any farther, overcome by the staggering weight of reality. The polio treatment was experimental. It had cured people, but it had killed people, too.
Tomorrow would be a long day, the 6.5 hour IV drip. Tomorrow would be back to hope and jokes and smiles and the certainty that Matt would be one of the lucky ones. But that night, in my traitorous head, when I finally, finally, made it to my room, I let myself worry.