Sixteen days before February 3, 2018, we (the doctors, Matt’s parents, and I) made one last desperate attempt to bring Matt back.
When Matt’s mom and I arrived at Columbia in the morning, Matt’s room was already a flurry of activity. Nurses and techs and doctors were bustling around Matt, drawing blood, prepping for transport, recording vitals. The surgery wasn’t scheduled until noon, but everything was already happening.
I remember the moment when Matt was wheeled into his first resection. I remember when he was taken into the operating room at Duke for the biopsy and catheter insertion for the poliovirus. I remember when he disappeared behind the doors marked restricted at Columbia for the shunt implantation. Save for a few fleeting seconds in an elevator large enough for a hospital bed and walking in a slow procession behind the nurses and transport techs, I don’t remember the moment he was whisked away for this final surgery. I find that unbelievable, and I wish it wasn’t true.
While Matt was in surgery, we (the doctors, Matt’s mom, and I) planned next steps. The doctor ordered a full spinal MRI, just in case, and the radiation oncologist suggested a small dose of radiation—three days—to that drop of tumor on Matt’s lower spine in order to preserve bowel and bladder function. In my heart, I knew it was too much. Too much fighting for one person, for one heart and soul and mind. Too much radiation for a body to undergo. But, I agreed to the radiation oncologist’s proposal. Because this treatment was not intended to cure or heal, this treatment was meant to preserve bowel and bladder function. I agreed to this treatment with an eye toward Matt’s quality of life, his dignity. The logic was this: if the brain surgery worked—all that hope, balanced precariously high on a razor’s edge—if he came back and we got those few more years together, he would need his dignity. If nothing else, maybe I could preserve his dignity for him.
After a few hours of waiting, the neurosurgeon walked into the waiting room and told us the surgery had gone well. When I pressed him to quantify what he meant by well, he said he’d been able to remove about 85% of the tumor. It was a success; we should have been thrilled. And there was cautious relief, but the worry hadn’t eased. The neurosurgeon explained that we couldn’t go see Matt yet because he was still in the operating room; they (whoever they were) were having trouble waking him up from the anesthesia.
An hour passed and it felt like a lifetime, an eternity. As the minutes ticked by with no information, I began to badger. I called the recovery room—maybe the nurses had forgotten to tell us Matt was out of the operating room. I texted the neuro-oncologist’s nurse (who no doubt regretted giving me her phone number). No one had any information and the worry escalated. And though this is a story of hope, in those moments, I believed the worst. I believed the possibility that had been haunting us since the moment the MRI revealed the tumor had spread all throughout his brain had arrived.
I don’t know how to describe the feeling of trying to stand upright, trying to breathe when everything, absolutely everything, is hanging by the most fragile thread. All I could do was pace and swallow the fear and push away the looming breakdown, because I knew that if I broke down this time, I wouldn’t have the strength to get back up.
A little more than two hours after we spoke to the neurosurgeon, we got the notification that Matt was in the recovery room. His mom and I went to see him. He was sleeping when we arrived in the recovery room, but we learned he’d been awake in the operating room, had answered questions and known his name. The nurses expected he’d now sleep through the night without incident. More cautious relief, but still that worry, still that uncertainty–still too much unknown.
Today marks three hundred posts—more than 150,000 words—and a part of me didn’t expect it to be so difficult to write today’s post. I’ve written about other hard days, I’ve shared the details of breakdowns and meltdowns. But this day feels different.
Because, in retrospect, with that perfect 20/20 hindsight, this day should never have happened. If we’d known the truth of what the spinal MRI would show—the truth that no one could have guessed because Glioblastomas aren’t supposed to behave the way Matt’s tumor behaved; it was the absolute truth we’d been told back when we first learned the word Glioblastoma—I don’t think we would have gone forward with the surgery. I don’t think the doctor and surgeon would have even suggested a surgery.
But we didn’t know—it was too far outside the realm of possibility for anyone to even guess—and we made a choice with the information we had. We made a choice so that I could look G and H in the eye and tell them with complete honesty that we’d fought as hard as possible, that we didn’t give up while even a reflection of a glimmer of hope existed.
Maybe one of the hardest truths of the story is this: Matt’s surgery was measurably successful. 85% of his brain tumor was removed and the whole brain radiation stabilized his leptomeningeal disease. Whether Matt, the real Matt, had returned is a question that will be answered over the next few days, but by the numbers, by the scans, the surgery had worked, had bought Matt more time.
In the About Me page of this blog, I wrote that we didn’t lose Matt because of brain cancer; it wasn’t that simple. And that’s the story that’s left to tell.
I don’t know how many hours I slept that night. My guess is not many. But when I did sleep, I went to sleep knowing the road we’d now travel wouldn’t be easy. I went to sleep grateful knowing we (Matt and I) still had a road to travel, at all. Which is a heartbreaking truth, but also a testament to the amount of hope still left in this story; sixteen days before February 3rd, there was still so much hope.