Matt and I had a full schedule at Columbia on November 29, 2017, the prep day before the official start of whole brain radiation. We had a MRI scheduled, followed by an appointment with our neuro-oncologist, followed by a radiation simulation—comparable (the way I understood it) to a dry run of the actual radiation.
We arrived in the city and checked in for the MRI only to be told we weren’t on the schedule. The receptionist sent us to another building. Matt and I walked the city block to the other building and were told we didn’t have an appointment there, either. We had reason to be frustrated. Not only was traipsing around the city difficult for Matt, but our schedule was so tightly packed that if one domino fell, the entire day could fall apart.
But Matt also wasn’t Matt one year ago today. He was frustrated and irritable and he blamed me for the MRI mixup. In truth, I’d mixed up enough reservations in our lives that I couldn’t truly rule out the possibility that I’d somehow mixed up this MRI. (Side note: Eventually, we learned that the mixup was not my fault.)
I called the neuro-oncologist’s office and spoke to one of the two receptionists who scheduled appointments for the doctor’s patients.
Columbia’s automated phone system was a daily frustration. The robotic voice frequently cut out. The system often hung up on me. Sometimes, the automated system just failed to answer. Too many times I found myself screaming in frustration as I pressed redial again and again and again. But when I did reach a person, I got in touch with two of the kindest receptionists I’d met during our brain cancer battle. They knew Matt and me by first name. They never complained when I asked them to, again, comb the schedule for a more convenient time, because they understood that we had two kids we wanted to rush home to see.
When I called, nearly in tears—because Matt wasn’t Matt (there was too much anger in his expression and not enough love and humor), because we’d been ping ponged from building to building for the last hour, because it felt like we were losing our battle against Glioblastoma and we couldn’t handle anymore delays—the receptionist told me she’d handle it. She put me on hold and, after a considerable wait, returned to let me know she’d found us a MRI appointment. She said we’d make the timing of everything work and she’d be there to help.
Two hours later, Matt had a MRI. Thirty minutes later, his shunt was recalibrated. Thirty minutes after that, his radiation simulation was completed. We arrived in our neuro-oncologist’s office for our 12:30 appointment at 3:45, only to learn that the doctor was in a meeting until 4:30. We chose not to wait. We had a handful of appointments already scheduled for the end of the week and the days following.
One year ago today, I remember sitting on a bench in a sun-drenched lobby feeling completely unfit for the role I’d taken on. I didn’t have Matt’s ability to charm people to get us to the front of the line. I wasn’t qualified to be in charge of Matt’s care. I needed Matt’s help—the real Matt.
One year ago today, we made it where we needed to be. We did the things we had to do.
In Post Hope, with the power of hindsight behind me, I realize most, if not all, caregivers probably have this same moment, this same who-thought-it-was-a-good-idea-to-put-me-in-charge moment. And I suspect most, if not all, caregivers follow up that moment of doubt by getting done all the things they need to do in the hope of saving the person they love from a vicious disease.
The truth is no one is prepared or qualified. The truth I learned after too many days of feeling helpless and unfit is that love, and a little hope, are enough.