By mid-April, preparations for chemo-radiation therapy were in full-swing — at least by the medical team assigned to my case. The assumption was clearly that I wanted to move forward with this as part of the standard of care. But I was on the fence. Everything was moving way too quickly and the stakes were far too high.
I was leaning toward no treatment. I knew that there was no cure for the terminal illness I faced and I knew that the standard of care was, to be charitable, not up to the task. I'd read and seen enough to know that cancer treatments are necessarily aggressive. They can take a heavy toll in terms of reduced quality of life, bodily damage, and side effects. Why spend the brief time I had left chasing something that was not a cure and which could actually make things worse?
As I hemmed and hawed, I was hoping to find better information on which to base the decision. I was about to learn how unrealistic that hope was. I would also learn something about why glioblastoma remains incurable despite decades of research.
The radiotherapy part of treatment required a brain map, which would be generated from an MRI. The idea was to concentrate the radiation beam on tumor while avoiding everything else. The brain map would help the team do this. Accuracy was crucial, and that meant getting a new brain MRI. So back into the tube I went.
A few days later my wife and I would have back-to-back meetings, one with Dr. Neuro-Oncologist and the other with Dr. Staff Surgeon.
The meeting with Dr. Neuro-Oncologist was mostly uneventful. The MRI showed nothing unexpected and treatment should proceed as planned. The resection bed (the area from which the tumor was removed) showed "blood products," which was normal.
After a short break my wife and I were waiting for Dr. Staff Surgeon. I knew something was wrong within seconds of his entry into the room.
"I believe you've had a chance to talk with Dr. Neuro-Oncologist about your recent MRI."
"Yes," I said.
"My conclusions differ from those of my colleague," Dr. Staff Surgeon said.
Unfortunately, this didn't come as a surprise. My at-home physical therapy routine had been getting more difficult. Movement of my left leg in particular was becoming less precise despite my best efforts. My symptoms seemed to be getting worse after steadily improving. Worried about this, I'd even told my wife prior to the MRI to brace for bad news.
Pulling up some images of my brain, Dr. Staff Surgeon explained that a new tumor was growing in the resection bed. It measured 3 cm in diameter. It was not present in the MRI taken shortly after surgery. The thing had grown from invisible to 3 cm in just a few weeks.
Pushing aside a hundred thoughts I managed to ask, "How common is this?"
"I'd put it in the top 10% of recurrences I've seen."
Dr. Staff Surgeon went on to explain that the tumor would continue growing until it outgrew the resection bed. At that point the tumor would push against the motor cortex and vision/speech centers. My left-side symptoms would get worse. I could also start to experience new symptoms, including changes to vision, difficulty speaking, and severe headaches due to pressure build-up within my skull. For all of these reasons, Dr. Staff Surgeon wanted to expedite chemo-radiation treatment.
I couldn't bring myself to look at her, but I heard my wife crying.
Later I'd learn about the correlation between fast tumor recurrence and poor prognosis. Apparently, I'd decline even faster and die even sooner than I previously thought. Or not.