On November 15, 2016, I saw our first rainbow—the rainbow that appears in the background image of this blog.
I took the picture and posted it on Facebook from the waiting room of a doctor’s office. We were awaiting the results of Matt’s “first” MRI—and I’m using the word first loosely here. He’d had MRIs done in the hospital—pre– and post- brain surgery. He’d had an extra MRI done for Duke. He’d had a MRI before he ever started radiation and after the six week block of radiation. But this was the first MRI following nothing but two cycles of Temodar. This was the first MRI after he’d spent two months away from doctors and offices and MRI machines. This was the first MRI in which he’d gone two full months without monitoring and a shimmer of worry traced every moment while we sat in the waiting room.
The MRI was clear. The doctor walked in with a smile and told us all was looking good, exactly as expected. Matt went to work. I went to get G and H. And we continued with our lives, blissfully unaware that one year later, we’d be scrambling to get a MRI, all would not look good, and nothing would be as expected. There’d be no rainbow.
On November 15, 2017, I put G and H onto the school bus, told them I’d see them in the afternoon, and hurried Matt to the local hospital to ask for a MRI based on the eye doctor’s findings. The local hospital informed us that they didn’t do MRIs in the emergency room. They offered a CAT scan, which theoretically would show whether anything needed to be urgently addressed. By 10:46, the CAT scan results were back. Nothing alarming. The tumor maybe, possibly looked slightly smaller. Great! Although, why the blindness? Why the cognitive changes? We were still plagued by unknowns. The local hospital consulted with Columbia, who wanted Matt to be admitted overnight for observation and a proper MRI, just to be safe.
The prospect of an overnight in the hospital for observation was distressing. The prospect of an overnight in the hospital when the next day was our son’s birthday was simply unacceptable. We couldn’t miss H’s birthday.
At 12:45—four hours after arrival—the ER doctor—the same one who’d stitched Matt up after he fell—arrived and told us they wanted to transfer Matt to Columbia. The shunt for his hydrocephalus needed to be recalibrated after a MRI (something about magnets) and the local hospital didn’t have the means to do the recalibration. (Recalibration turned out to be a constant source of frustration over the next few months.)
We decided not to wait for the local hospital’s transfer, which would require more paperwork and waiting. Sensing that we were in for a long afternoon, I recruited family and friends to help with G and H after school, and then drove over the GW Bridge to Columbia’s emergency room—the place we’d brilliantly planned to avoid.
By 3 p.m., we were in a bed in the emergency room waiting for a MRI.
At 5 p.m., we were still waiting for the MRI.
At 8:16 p.m., we were still waiting for the MRI. And patience, mine and Matt’s, went out the window.
At 10 p.m., he was taken into the MRI. While in the MRI, the ER doctor suggested to me that Matt may need to be kept overnight. His vision tests were worse than expected. There was a fear of permanent blindness or a new tumor in brain lining. I remember telling the doctor that we had a five—almost six—year old son at home who wanted to wake up to his parents on his birthday.
At midnight, we were still in the emergency room. We’d been shuffled from room to room. Matt had been stuck with needles, examined under lights, and questioned endlessly. We were exhausted, impatient, and desperate to get home in time for a birthday.
A friend texted to ask how I was holding up. I said, “Nothing to worry about yet.” Denial or delirium or blind hope? One year later, I don’t know. I just knew we didn’t have the luxury of falling apart.