Deja Vu

My husband, Crow, had a seizure on Thanksgiving.

He’d never had a seizure before, ever.

A few hours before the grand mal seizure, Crow had an episode of aphasia. We were sitting together at the dinner table, well after our Thanksgiving meal, reading the Black Friday ads. We were at his mom’s house, visiting, and we’d planned to go Black Friday shopping, as we do every year, the next day.

Crow’s step-father, Bob, was making out his Christmas list and asked Crow if he knew what a certain type of wrenches were.

Crow responded, “What about your username?”

Since he’d been reading an ad at the time, I thought that he, like me, was only half-paying attention to the conversation. But I looked up.

Bob asked the question again.

Crow’s response was equally as confusing as it had been. He looked at us like he couldn’t understand why we didn’t understand him. “What?” he asked.

We explained to him that his response had nothing to do with what Bob had asked. I wasn’t sure whether he was goofing around, but I started to get a little scared. I’d heard of aphasia (from an episode of Star Trek: The Next Generation, but I since had learned it was a real thing because I look everything up) and I knew it was a sign of a stroke or something equally as serious.

Crow told us he needed to drink some water. We’d split a 24oz beer, he’d had about 3/4th of his, and he was convinced he was just reacting weird to the alcohol. It was the only beer we’d had all day. I’d opened it to relieve the tension of a day spent with the in-laws, which is always nerve-wrecking to me because I feel like I have to be on my best behavior, carefully choosing my words and being on guard. I’d wanted to cut a little of the edge off that I was feeling.

Privately, I told Crow that I’ve been drunk and I’ve been around a lot of drunk people, but I’d never known anyone drunk to not understand what was going on. The episode had subsided and he started feeling more normal so he was shrugging the whole thing off.

I told him that what had happened was a sign of something serious and that we would see a doctor when we got back to Akron (since we were in Toledo for the weekend). He seemed okay, but I did not want to take any chances; I’d learned from never forcing Mike to see a cardiologist after his cardiac incident in Detroit that I should take all medical issues seriously. Crow still didn’t seem convinced.

(I learned in the days that followed that Crow had actually experienced a sudden bought of dizziness and an inability to understand the words he was looking at in the ad.)

He was acting weird as we got into bed, however. He had a headache and he kept getting up to go to the bathroom. He even took out his cell phone and started to try to tell me the password to an app he uses to track all his account passwords.

I was just starting to get to sleep when he nudged me awake. He sat up in bed and looked at me, but said nothing. His stomach was making really weird noises and I thought that maybe he had to throw up. I asked him what he wanted — did he need me to get him a garbage can to throw up in, or did he want me to help him get to the bathroom? He did not respond.

And then his whole body started to shake. He slumped on his side and his head and arms and legs jerked around. He was making very loud breathing noises–each exhale was a loud burst of air. I recognized immediately that he was having a seizure, even though I’d never seen one before (except on TV).

I ran downstairs to where Bob was still up doing dishes.

“Craig is having a seizure or something!” I said frantically.

Bob asked if he should call 911 and I said yes.

I ran back upstairs to find Crow still having the seizure. Now he was foaming at the mouth. I didn’t really know what to do at that point, so I just kind of stood there. Bob eventually came upstairs with a cordless phone because the 911 operator wanted to talk to me since I was witnessing the seizure. She told me to make sure he stayed on his side.

The seizure stopped and Crow seemed dazed. He sat up on the bed with his legs over the side. I called his name but got no response. He looked up at me with lost, dazed eyes. I wondered fearfully if the seizure had made Crow permanently unable to speak. Was he lost forever now? Like a stroke victim?

Crow’s mom arrived in the room and he slumped against us. We rubbed his back and called his name but he said nothing. Meanwhile, I was keeping he 911 operator appraised of his status while listening for the arrival of the paramedics. She stayed on the phone with me until I heard the sirens outside the house.

When the paramedics arrived in the bedroom, Crow immediately stood up. “I have to go to the bathroom,” he announced, his first words since before the seizure.

I blocked his path and put my hands on his chest. “You have to stay here,” I said. “The paramedics are coming.”

He pushed forward, stronger, and again insisted that he had to go to the bathroom.

The paramedics had reached the room by this time and they were a bunch of big guys. Crow insisted again that he needed to use the restroom so they helped him walk downstairs to the bathroom.

When Crow came out of the bathroom, the paramedics had a bit of a time convincing him to sit on the stretcher. He was kind of belligerent with everyone, which is completely against his nature.

“I know, I know,” he grumbled when one of the paramedics asked him if he could sit down on the stretcher. “I heard you,” he barked, but then he remained standing. They finally managed to convince him to sit down and then lay down on the stretcher. When they started strapping him in, he started to try to sit up and grumbled that he didn’t want to go.

Even though he appeared to be conscious, Crow remembers none of these details of that night. The last thing he remembered was nudging me awake because he felt weird. The next thing he knew, he was being wheeled into an ambulance. I know what this is like, somewhat, as I once got into a bike accident in Colorado where I actually woke up in an ambulance having no immediate recollection of how or why I’d gotten there. Even today, all I remember is hitting a dog that ran across the road, and then waking up in the ambulance. It’s scary as hell to realize something happened to you that you don’t recall at all.

Once again, I found myself in the front seat of an ambulance while my husband — of whose condition I was uncertain — was in the back as a patient. I did feel comforted that he had been conscious when they were wheeling him into the ambulance, but I was frightened because I did not know what was going on in the back. Did he lose consciousness again? Had he had a stroke? Why had he had a seizure?

Unfortunately, the answers to that question were a lot more scary than I could have ever anticipated.

***

Crow spent 5 days in three different Toledo area hospitals. The first was merely an emergency room in Bowling Green where they took a CT scan and made sure he was stabilized. He was then transferred to St. Luke’s for further tests. And then transferred again to Toledo Hospital for additional tests and possible triage if necessary. They ran batteries of tests from infectious disease (a spinal tap) to neurological. We left Toledo with very few answers and some way-t00-far-in-the-future follow up appointments with Akron doctors.

Fortunately, Crow’s PCP was on the ball and got better referrals faster. The primary concern throughout the entire time was the fact CT scans and MRIs presented a 1.3cm – 1.6cm lesion on Crow’s left temperal lobe. It wasn’t necessarily presenting like a big, scary tumor so its pathology mystified most of the doctors. We eventually ended up seeing a neurosurgeon at the Cleveland Clinic, however, who was convinced it was a tumor.

On Christmas Eve, Crow had a biopsy and a procedure called laser ablation in which they “cooked” the visible tumor with a laser to kill it. A little over a week later, the results of the biopsy came back and we found that the tumor was stage iv glioblastoma — a very aggressive form of brain cancer that a mere 200,000 people a year in the US are “lucky” enough to get. Unlike a lot of other cancers, there really is no explanation as to the cause of glioblastoma.

Tomorrow Crow begin 6 weeks / 5 days per week of radiation therapy. He also begins taking a chemotherapy pill (Temodar) daily 7 days a week. The hope is to destroy an unseen microscopic cancer cells that were missed by laser ablation.

It’s not going to be an easy road. Glioblastoma is notorious for recurrence. It’s almost guaranteed. Our lives will now be lived between 3-month MRIs to monitor for tumors. He may still have to take Temodar for five days a month for several months after the radiation regiment as well.

Because he is on seizure watch, Crow cannot drive a car for 6 months to a year (which is tracked from Thanksgiving when he had the seizure). Fortunately, they will allow him to ride a bicycle once he’s fully recovered from surgery (6 weeks out) but he must always do so with other people around in case he has a seizure.

Our lives are altered forever. We’re hopeful right now. I want to believe that maybe he’s just one of those random people who get a cancer and that it never comes back. I try to be realistic too. Either way, I wake up every morning in a panic. I spend the whole day trying to make myself feel more positive. We both feel a little stuck and unable to plan for our future. At the moment, I am also out of work because I have been trying to start my own business since August. Things are tight and the world is less secure than it was in the beginning of November.

So far, I’m not happy with 2016.