November 22, 2017: Thanksgiving Eve

On November 22, 2017, with Duke’s grim assessment of Matt’s future weighing over us, we (Matt, his parents, and I) headed over the George Washington Bridge to meet with Matt’s neuro-oncologist to discuss the lingering glimmer of hope that kept us from falling over the edge into hopelessness.

We left the house right after G and H boarded the school bus in an effort to beat the Thanksgiving Eve morning rush hour traffic. Our neuro-oncolgoist had squeezed us into her schedule, which meant she’d likely double or triple booked herself in order to get us onto the calendar. It was a kindness. And also meant that we couldn’t really complain when we had to wait more than an hour for our appointment.

When the doctor arrived, she sat down and clasped her hands together. She asked Matt a series of questions to test his cognition. The questions had changed from the ones he was asked months and months earlier. No longer was he asked to remember a grocery list. No more apple, penny, and table. Instead, she pointed to her nose, to her pen, and asked him to name the objects. He could. She asked him the date. He knew it. She asked him how much money she’d have if she had five quarters. He asked for a piece of scrap paper—a habit he’d gotten into with his cognition homework—but couldn’t answer her question.

We talked about the MRI. The doctor showed Matt’s parents the images Matt and I had seen the week before. The images were no easier to view and the doctor’s voice softened as she pointed out all the places to which the tumor had spread. That endless report.

Afterward, she looked me in the eye and told us that a cure was off the table, that we were at a point in Matt’s treatment where we needed to decide how hard we wanted to fight. Her words echoed Duke’s from the day before with one critical distinction. She didn’t give us a timeline. Refused to give us a timeline, actually. Because radiation had worked so well once before, because Matt, despite all his cognitive deficits, still defied her expectations. Because his case was not like any other she’d seen. Which meant, in my mind, that though a cure was off the table, hope wasn’t.

The doctor asked Matt if there was a tipping point, a point at which his quality of life became more important than fighting back the tumor. He answered in the exact way I expected, the exact way he’d always answered. He said he wanted to do whatever he could for as long as he could to fight. He said he wasn’t done.

And some selfish part of me had hoped for that answer. Because I knew how to fight alongside Matt, but I didn’t know how to stop fighting alongside Matt. The idea of doing nothing was the most frightening suggestion I’d heard put forth since Matt was diagnosed. Doing nothing was too hard.

After the appointment, the radiation oncologist made time to meet with us. He told us Matt would need fifteen rounds of radiation—five days a week for three weeks. Which meant we’d be driving into the city every day during the heart of gridlock season. I could expect no shortage of stress, traffic, and delays. The radiation oncologist went on to explain the side effects—dry mouth, headache, hair loss, and a 50% chance that Matt would lose his short term memory, either temporarily or permanently. But he also agreed with the neuro-oncologists. Whole brain radiation could work. Whole brain radiation could not only slow the growth of the tumor, but maybe, possibly, hopefully reduce the tumor.

Whole brain radiation—the stress and side effects—could all be worth it.

No decision we made was easy. The odds had been against us since the beginning. But like I said so long ago, we always chose the road that offered the most hope. Every time.

On November 22, 2017, our hope for a cure was gone—although, to be very honest, a not-so-small part of me couldn’t stop hoping that poliovirus would make an eleventh hour appearance to cure Matt—but a different hope remained: the hope that Matt could come back to himself, that we’d get more time together. That hope remained as glowing and warm and reachable as ever.

12 thoughts on “November 22, 2017: Thanksgiving Eve

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