On October 24, 2017, Matt returned to Columbia for a full body PET scan, which I described as a full body MRI. Due to the timing—which was out of our control—Matt’s mom agreed to drive and stay with him during his appointment so that I could be home for G’s and H’s bus and after school activities. (The need to be in two places. The luck of being surrounded by the friends and family who surrounded us.)
I texted a friend and said I was grateful for the break from doctor’s offices. The night before my dreams had been overwhelmed by images of waiting rooms, phone numbers, and lab coats.
When Matt arrived at the test, the nurse handed him a container full of a liquid to drink. The liquid consisted of tracers, which, according to Google, collect in areas of the body with high levels of chemical activity and show up as bright spots on the PET scan. Clusters of cancer cells would show up as bright spots on the PET scan.
We were again investigating the lesions on Matt’s ribs and spine. We were again asking whether a secondary cancer was impacting Matt’s road to a cure. We were again not yet addressing the tumor in the left parietal lobe of Matt’s brain.
Matt struggled to finish the liquid. The taste of the liquid and an imperfect ability to focus on the task at hand undoubtedly played a role in his slow progress. After two hours of reminders and cajoling, Matt finished the liquid and went in for the PET scan. I’m sure the nurses were as frustrated by the delay and the need to constantly remind Matt to drink as Matt was to receive the reminders. I’m sure the hours in the waiting room surrounded by the comings and goings of other patients wore him out.
Matt returned home around 4:30. He went straight upstairs to nap and didn’t come down until dinner—that cruel transition when G and H started missing him, even though he was right upstairs. I texted a friend and said that he seemed pretty out of it. One year later, with my memory full of so many other events, I don’t know what I meant by pretty out of it. Pretty out of it could mean any number of things from the struggle to have a conversation to a toned down—flat—personality. Pretty out of it could refer simply to the fact that some spark was missing in his eyes, a flare of wit and humor and presence that had once been intrinsic to Matt.
What I do remember is that despite dreaming of endless phone calls to doctors’ offices, I did not call Duke or Columbia to tell them that Matt was pretty out of it. I’d spent all of September on the phone with doctors discussing Matt’s symptoms—the headaches, double vision, and back pain—but I couldn’t call for pretty out of it, even though pretty out of it was as concerning as the headaches and double vision and back pain. Pretty out of it was too vague, too impossible to quantify by a 1-10 scale. Pretty out of it was something we had to navigate alone—the cruelty of brain cancer.
Today marks exactly nine months since the day I saw the MRI image that destroyed hope. We (Matt, Matt’s parents, his neuro-oncologist and I) will see the results of this PET scan on Friday, October 27, 2017, but, somehow, we didn’t actually see the results until January 24, 2018. Somehow, for three months, we didn’t see the stark truth.
In writing for the next three months, I suspect all I will be able to see is truth.