So far I’ve managed to tell my story while ignoring the elephant in the room: death. In March of this year I was diagnosed with an incurable brain cancer known as “glioblastoma.” It’s terminal, meaning I’ll die from it unless something else kills me first. It’s also highly aggressive, meaning it will probably kill me sooner rather than later. I’ve been treated with the standard of care.

The end of chemoradiotherapy in early June was an important milestone for me. In late March I’d been diagnosed with a tennis ball-sized malignant brain tumor, a terminal condition known as glioblastoma. Since diagnosis, most treatment decisions had been automatic because my doctors were following the “Standard of Care” (SoC). This consisted of, first, surgery to remove and characterize the mass.

Once the initial novelty wears off, chemoradiotherapy becomes routine. You commute to the cancer center. You check in. You wait in the lobby to be called for your treatment session. You’re led back to the treatment unit to get irradiated. If I timed it right, the entire excursion could take me less than two hours including commute time. These trips would eventually start to feel like a job.

On June 8 my brain was irradiated with megavoltage X-rays for the last time — ever. I had mixed feelings about this. On the one hand, I was glad to be done with this phase of treatment. Just over two months previously I’d been diagnosed with glioblastoma, a terminal, incurable, and highly aggressive form of brain cancer. A surgery had removed all of the MRI-visible tumor, and then some.

In the days following brain surgery to remove a tennis ball-sized glioblastoma, one term I heard a lot was “next-generation sequencing” (NGS). The idea seemed straightforward enough. Drugs and radiation are blunt instruments, but each tumor is genetically unique. NGS would reveal my tumor’s specific vulnerabilities, which would translate into more effective, targeted treatment.

Being diagnosed with terminal brain cancer is bad enough without conflicting medical opinions. But in mid-April this is exactly where things stood for me. Dr. Neuro-Oncologist and Dr. Staff Surgeon, two members of my treatment team, had looked at my recent brain MRI and arrived at diametrically opposing interpretations. One said a new tumor, growing like crazy, had appeared since my surgery, and the other said there was nothing unusual going on.

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.

March had been a tough month due to a terminal brain cancer diagnosis, but April was in many ways tougher due to the after-effects of surgery. I could walk, but only with a walker — then just barely. Both my left leg and left arm were weak and imprecise. My right side had atrophied due to deconditioning. My balance was atrocious.

By early April I was at home, doing my best to forget the worst two weeks of my life. I’d been diagnosed with a tennis ball-sized brain tumor, which had been surgically removed. Both imaging and pathology were consistent with glioblastoma, a fatal, rare, incurable, and ferocious form of cancer.

On the afternoon of April 4, I was discharged from the hospital. Due to ongoing disabilities, I wouldn’t be headed home but rather to an Acute Rehabilitation Unit (ARU). The doctor working on the transfer added the following note to my medical record: I was still walking unsteadily, so I was transported by ambulance.

By March 30 I was doing well enough that talk of discharge from the hospital seemed realistic. During the previous six days I’d been admitted via the ER after experiencing a range of bizarre symptoms. An MRI revealed a lemon-sized malignant brain tumor, which had been surgically removed. By all accounts, this procedure had been a success. Unfortunately, surgery had left me with worse physical symptoms and new cognitive symptoms.