One year ago today, Matt booked a flight to come home. Overnight, after an excruciating headache that had lasted most of the night, he had decided to forego the rest of the trade show. He was devastated, but sure it was the right move. He booked a 4 p.m. Chicago time flight home and planned to still spend the morning at the trade show. He ended up leaving early.
At 1:45, I helped Matt with a texting issue and he responded: Thanks. I’m obviously a mess. He wrote (later) that he was glad to be coming home.
My heart broke for him. If he was admitting the truth, how could I not?
I went into overdrive, calling and emailing Duke to let them know Matt’s symptoms were worsening by the day and scouring the Internet for a story that might calm the panic. I read the studies about Gamma Knife radiation that I’d read a thousand times before. I paced and worried and tried to figure out what exactly it meant that Matt was coming home. (Funny side story: In the flurry of stress, I’d accidentally thrown out H’s homework sheet and was forced to dig for it in the recycling bin that was already out on the curb waiting for pick up. Not my finest parenting moment.)
I texted a friend and told her that Matt was acting the way he did when the poliovirus caused the swelling in the left parietal lobe. She asked whether the symptoms (the confusion, trouble texting) could be side effects of the Gamma Knife radiation. I told her I didn’t think so. The radiation Matt received had been to the right parietal lobe of Matt’s brain. Wouldn’t the symptoms look different if another part of the brain was swelling? I admitted I didn’t know. I couldn’t even put forth a cute theory about what was happening.
I did know that someone—a medical professional someone—needed to intervene. I did know that Matt was coming home to me, and as of that moment, we had no appointments scheduled or contingency plans in place to prevent him from getting worse, or to make him better.
At 5:33, I spoke to the nurse at Duke. She told me she’d pass on Matt’s symptoms to the doctor. I expected I’d hear back about next steps in the morning and I breathed a sigh of relief. That was all I needed to hear. That there were next steps. That there was something we could do. I could wait until the morning. Or so I thought.
Matt landed around 7:30 and was home shortly after 8:30. G and H were already in bed. Matt walked into the house and beelined toward his favorite spot on the couch, leaving his suitcase by the door. We watched a show together, and I remember thinking: okay, he’s not so bad. I was overreacting, as always.
We went to bed around 10.
Just before midnight, I awoke to the sound of Matt groaning in pain. I turned to his side of the bed and it was empty. He was lying on the floor at the foot of the bed, writhing in pain, holding his head. I shot up out of bed and asked him the question the doctors had ordered me to ask any time Matt had a headache: On a scale of 1-10, how bad is your pain?
In the fifteen months since Matt’s brain tumor diagnosis, he had refused to answer this question—for me and for the doctors. He hated the arbitrariness of the one to ten scale. I asked, expecting him to be annoyed, but knowing that when I called Duke’s emergency line, they’d want to know. I asked, because I knew the answer he provided, if he provided one at all, would determine what to do next.
For the first time, Matt answered the question.
On a scale of 1-10, how bad is your pain?
His answer: 1000.
And with that, the bottom of everything dropped out from beneath our feet.