December 20, 2017 marked Matt’s last day of whole brain radiation. Fifteen doses of whole brain radiation to slow, and hopefully beat back, the leptomeningeal disease, the tumor that had spread all throughout his brain.
We left the house earlier than usual on December 20th. On our way into the city, we stopped at Dunkin Donuts and bought huge boxes of donuts to distribute to the people who we’d come to know over these last weeks. A box for the men and women who worked in Columbia’s parking garages; a box for the receptionists, nurses, and technicians at the radiation clinic; and a box for those who worked at the neuro-oncologist’s office.
The overall feeling as we drove into the city for Matt’s final radiation appointment was relief. We’d made it through yet another round of treatment. Now, we simply had to wait. The radiation oncologist had confirmed that likely some of the worsening difficulties Matt was experiencing with cognition—word finding, confusion, irrationality—were due, at least in some part, to the brain swelling from whole brain radiation. The radiation oncologist noted that in a normal case, the patient would be put on steroids, but Matt had ceased being a normal case more than a month ago. Matt was already on a high dose—and already suffering the side effects of that high dose (anger and joint pain)—so the doctor was hesitant to increase his steroid. We could do nothing but wait for the swelling to subside on its own and for the radiation to work against the tumor.
I remember when we delivered the donuts to the receptionists at the neuro-oncologist’s office. We didn’t have an appointment—and no doubt they feared we’d stopped by for another impromptu appointment, thereby scrambling their calendars once again. We (Matt and I) delivered the donuts and made a joke about seeing them next year. They laughed and told us to enjoy our break, they’d see us on January 22nd, the date of Matt’s next scheduled MRI. It never occurred to me we’d be back much sooner than I expected.
When I look back on December 20, 2017, I see nothing but hope and joy. I remember being able to breathe easier on December 20, 2017. I remember feeling as if I was skipping from building to building as we delivered the donuts. (In my memory, I can’t stop smiling at the people we spoke to.) We were done. Now, we just had to wait until things got better. I even texted a friend and said I could handle whatever else came our way because the end was in sight. In reading that back, I realize I should have included the word happy. I believed our happy end was in sight.
Maybe it was naive. We’d been told a cure was no longer on the table. But what if. We’d made miracles before and what if works in both directions. What if this treatment works a miracle for Matt? What if our story has another couple of happy chapters?
In many ways, December 20th was one of our most hopeful days. As the darkness of Matt’s disease gathered around us, deepened and closed in, we somehow saw light and hope, enough to believe better days were on the horizon.
One year ago today, Matt was sent home with a black tote bag. Inside was the mask he wore during radiation. Neither of us knew what to do with it then. Now, I still don’t know. It’s a symbol of what Matt underwent, all that he endured in the hope of defeating a tumor that was simply relentless in its attack.