One year ago today, I panicked. The best way I can describe my thought process is to say that I was worried the other shoe was about to drop and I thought I might be able to catch it before it crashed to the ground.
The day was difficult. The pain, the temper, the inability to have a true conversation—all his symptoms—returned with the addition of a new, terrifying symptom. Matt’s breathing pattern had become erratic. I first heard it the night before when I’d put my head on his chest while we watched television.His heart was beating too fast. The quickened heartbeat returned to normal after a few minutes. I tried (and failed) not to worry. The next day, Matt’s breathing pattern fluctuated. He’d suddenly begin breathing faster, as if he was running a race, though he was doing nothing more than sitting.
My thoughts instantly darted to what I believed was the worst case scenario: a pulmonary embolism, better known as a blood clot in his lungs.
I had a good reason for worrying about a blood clot in Matt’s lungs. During Matt’s latest hospital stay, the hospital doctors had ordered an anti-clotting medication, a standard drug for patients who are largely restricted to their beds. I had refused the medication on Matt’s behalf. Why?
The answer is simple. I refused the medication because Duke hadn’t ordered it. Matt wasn’t a regular hospital patient. He wasn’t even a regular Glioblastoma patient. He was one of 61 people who’d been injected with a highly experimental virus that could save his life. He was an Avastin patient and a stereotactic radiosurgery patient (Gamma Knife). Every standard medication, every standard test, needed to be considered through that lens. The only people qualified to make that consideration worked at Duke’s brain tumor center.
During Matt’s last hospital stay, I’d refused the anti-clotting medication because I’d wanted to get Duke’s permission first. But Duke hadn’t call back right away. We (I) couldn’t get an answer about the anti-clotting medication. By the time I did, (the answer: fine to give the medicine because there would be no adverse reaction) it was too late for Matt to get the medicine.
Which meant, when his breathing turned erratic, that if he had a blood clot in his lungs, it would be my fault.
I called Duke. This in and of itself wasn’t surprising—I spoke to the nurse at Duke daily during this last week in September to give her updates on Matt. We’d begun to establish—I thought (hoped)—a friendly repertoire. I knew when she had to leave early to tend to a medical emergency with one of her own kids and she knew the way G and H had started reacting to Matt outbursts.
Duke told me to take Matt to the emergency room to have him checked for a blood clot. Better safe than sorry. I called in help. Again. Matt’s parents stayed with G and H and I drove Matt for another late night (if 9 p.m. is late night) visit to the emergency room.
We arrived and Matt was taken in for tests. The difficult day melted away. His pain eased and some of that Matt charm returned—he really, very truly always managed to find a way to perform in front of the doctors. In retrospect, it’s somewhat incredible how consistently simply being in a doctor’s office made his symptoms disappear.
We left the hospital around two in the morning. The blood tests and chest x-rays showed no sign of a blood clot. I was relieved, finally able to breathe normally myself, and feeling more than a little foolish. I’d worried everyone for nothing, added layers of stress to the night and forced Matt to undergo more tests for no reason at all.
Without the benefit of hindsight, this late night trip to the ER looks like nothing more than a waste of time, an example of how panicky and paranoid and overdramatic I’d become. But this story is nothing but hindsight, and that late night trip to the ER wasn’t a complete waste of time (though it may still be an example of how panicky and paranoid and overdramatic I’d become.)
Matt didn’t have a pulmonary embolism. The hospital doctor confirmed as much when he called us the next morning. But he’d found something else.
It’s only in hindsight that I see the truth of September 29, 2017. We’d gone to the emergency room for the sole purpose of attempting to catch that other shoe. The only problem: we weren’t looking at the right shoe.
The shoe that dropped wasn’t supposed to ever drop. What happened to Matt wasn’t supposed to be possible.
I’ve said before that we weren’t lucky medically. The truth of that statement will become obvious as the story heads into the final months.
I’ve also said that hopefully our story will help someone else—maybe someone who also seems to be living a nightmare that wasn’t supposed to be possible. Maybe it’ll help medically. Maybe it’ll help simply to know you’re not alone.