After my seizure experience I am attempting to pick up the pieces and reconcile my two very different experiences of near death.
If someone hears about a brain tumor most people would think it’s the end. A seizure, on the other hand, happens fairly often. But for me, it’s the seizure experience that has me seeking out ways to cope with the trauma.
My brain tumor experience was full of messy emotions, mystical experiences, and saying goodbye to everyone. It was long and drawn out. I waited five days in a hospital room for the surgery. I had Paige by my side nearly every minute. My parents were there, I had visitors from church who brought flowers, and we had family drop everything to take care of our kids for what ended up being my nine day hospital stay. I really felt like I left everything there. I was full of gratitude and awe looking back at my life and what I had experienced. There was no bitterness, no regret, no desperation for anything more. Before being wheeled off to the operating room, I was held by my wife and my parents, and I told them where they could find me if I left my body. It was sweet, serene, and peaceful.
The seizure experience was the exact opposite end of the spectrum. There was no build up. There was no time to contemplate. It was a futile struggle of myself against my own body, failing to cooperate but knowing that something was very wrong with my brain. I flailed at a window in front of Paige and my children, asking for help, and then fell into a bush and went to black.
This past Tuesday I experienced a seizure. It was a partial seizure followed by a complete seizure. This is the scariest thing that’s happened to me yet.
I was working on the bikes outside. It was nice out, and I was trying to get the kids some exercise. I had set up shop along the sidewalk that faces the living room windows of the house. Paige and the kids were inside playing a card game of Sleeping Queens.
My bike had a flat tire. My bike also had the tag-along on it (a kid’s bike with an attachment you hook up that makes it look like a double bike). I tried fixing my flat, but realized something was wrong with the fancy presta valve I have on my mountain bike. Something had dented the valve itself, and it wouldn’t hold air for very long. I tried to brute force straighten it, but nothing worked. I realized I’d need to attach the tag-along to my wife’s bike.
Currently, my wife’s bike had a wee-ride on it, which let Will ride almost on my lap. It was a pain to get off, but I finally tossed it aside and lifted the seat post to slide the tag-along attachment through it.
The last step was to tighten the hex nut holding the seat post in place. I used my hex multi-tool and tightened it. After I finished, I looked over my left shoulder at the sky. But something was wrong because I kept looking over my left shoulder at the sky. At first I thought I was repeating the movement to be funny, even though no one was around. Then I realized I couldn’t stop performing this movement. With every fiber of my being, I couldn’t stop. I was stuck doing this awkward movement. It was like I was a bugged video game character, stuck repeating the same ridiculous series of movements, no matter what input you give the controller. I was able to turn and face the window where I saw my family. Somehow, still turning to look over my shoulder constantly, I was able to hop toward the window. I was stuck repeating one word over and over: “Help.” I managed to flail one of my arms at the window. I heard Paige call out, “JOHN! JOHN! JOHN!” and the last thing I remember was falling into the bushes. I blacked out.
Paige later told me I came to three or four minutes later. She had told the kids to go upstairs to Mina’s room and then dialed 911.
I had been shaking and starting to foam at the mouth. She thought I was dying in her arms.
I called her “Mina” a few times and tried to get up under my own power: she wouldn’t let me, and I didn’t have the balance. I heard sirens in the background. My eyes closed again. When they opened again, I was surrounded by emergency personnel– EMTs and firemen. I saw a gurney being rolled next to me and realized what it meant. I was trying to answer their questions. There were so many faces to focus on, and Paige’s face and assurances, too. I could see my neighbor in the background running in and out of his house: he’d soon be taking care of my kids for a few hours.
Once I got in the ambulance, Paige was calmly answering a series of questions. This calmed me down, too. I was answering questions. Or, at least trying. I kept giving them a 7-digit social security number instead of the full 9 digits. I eventually got it right. The EMT hooked me up to a heart rate monitor and started giving me oxygen. My heart rate was through the roof. I tried not to look at the back window because I could recognize the streets, and it was making my head swim. Paige was not in the ambulance with me, but she was following it after taking the kids to the neighbor’s house. I tried making conversation with the EMT to prove that I was stabilizing. The hospital we chose is only 15 minutes from our house. I insisted on not going downtown– I’d done that ambulance ride before, and if I could get everything I needed at the closer hospital, it’d be better. I was given a face mask and placed in a room in the ER with a bed. (COVID hospital experience was just like the usual, except everybody had face masks.) I was able to scoot off the gurney and on to the bed under my own power. Paige was then with me. A nurse came and gave me an IV hook-up. They would soon be giving me Keppra, an anti-seizure med I was on earlier in the year, but the doctors had stopped prescribing to me in June. During conversation, the nurse mentioned that she was an epileptic. I asked about restrictions and limitations. “It could be different, but South Carolina law doesn’t allowing driving for the first six months.”
I tried not to react. I was alive and being cared for– that was a blow, but it was also something I’d dealt with before, just not for that long. A tall, long grey-haired ER doctor who looked like my old boss attended to me. They would be giving me a CT scan to see what was going on in my head. They were sure it was swelling, that they could give me a steroid to stop the swelling, put me back on Keppra to stop the seizures, and send me home that night. This was great news to me! No nights in the hospital. (After a 9-day stay in a hospital, no duration sounds appealing.)
The CT scan was quick. The results took a while to process, but it was deciding what to do with me that took the hospital staff their time. The ER doctor came back and explained, “Nine times out of ten, we give you a steroid to stop the swelling, get you an IV of Keppra and a script, and we send you home. But you’re the one out of ten. Because you’re already on a steroid and trying to taper off, we’re going to give you that steroid, the Keppra, and keep you overnight for observation.” My heart sank: I looked dead-eyed at Paige. For a few minutes there, I was going back home, but now I was checking into hotel “who-knows-what?”
Paige ran home to pack me a bag. I wasn’t alone very long before she was back. We were then informed I was getting an MRI for my head that night. Previously they said it was too late.
We saw the hospitalist, who asked me a series of questions before having a room prepared for me. We said our emotional goodbyes, and I was moved to a wheelchair to be taken to get the MRI with my bag on my lap. I was the last MRI of the day for the hospital. It was pretty standard procedure– loud noises and a claustrophobic mask. I usually meditate very well during MRIs, but this one was different. I had trouble coming back from my distractions. Afterwards I was wheeled up to my room and laid in the bed prepared for me. By this time it was 9:30pm. I had my seizure about 4:13pm, as noted by the call log on Paige’s phone, when she called 911.
A nurse came in to place electrodes on my chest so they could monitor me via an EKG. They took my vitals and told me they’d be in every 2 hours to check on me.
I tried going to bed, but I couldn’t sleep.
The next morning, the oncology doctor assigned to the hospital did rounds and came to see me. A nurse practitioner was with him. There were communication issues from the very beginning when I explained that I’d like to record the conversation since my wife couldn’t be there and she picks up on stuff I don’t. “Ok, is she on the phone yet?” “It’s recording.” “She’s on the phone?” “I’ve hit the record button.” “Is she on?” The nurse practitioner had to interject. I was then informed that they were scrapping my previous steroid, Prednisone, and giving me the steroid they wanted to give me yesterday, Decadron. At this point, I didn’t care, but I had been tapering off of Prednisone for over a year. I had to start taking it due to the toxicity effects of my treatment giving me immunotherapy-induced hepatitis. Now I guess I was starting something from scratch. Whatever. It also meant I’d have to stay another night for observation, since I’d be starting this new drug. The doctor then informed me that the swelling was either caused by necrosis from my radiation treatments or from a recurrence of cancer in my brain. He urged me to consult with my radiation oncologist, my usual oncologist, and my neurosurgeon. Then they left.
I sat pulling up MyChart– the doctor communication app on my phone. I could write messages to all those doctors from my bed. My fingers were still not working well enough to text. I had to use voice-to-text, which, as a writer, feels awful. I wrote messages to my neurosurgeon and my oncologist. My radiation oncologist was the only doctor I couldn’t reach on the app. Paige was working that angle and was supposed to hear something back.
My neurosurgeon, my superhero brother, was the only one to review the previous night’s MRI and reply. “Swelling looks to be effects from radiation therapy and not cancer recurrence. Feedback should also be sought from radiation oncologist and hematology / oncology.”
So necrosis? Dead brain tissue? Yay necrosis?
For the life of me I still don’t understand why I was the one reaching out to those doctors that Wednesday morning. Those doctors were his colleagues. Wouldn’t it be easier for him to pick up the phone and call them? Why put this on me, in my condition?
Wednesday morning progressed, and while stretching, I starting hiccuping. It lasted for hours. I tried everything– nothing worked. I slept through most of the day Wednesday; I was still so tired and woozy from Tuesday. I could’ve taken a sleep pill Tuesday night, but forgot to ask for it. I wouldn’t forget to ask Wednesday night.
Later in the day I talked to my nurse about discharge. I would be able to get out Thursday morning after the oncology doctor made his rounds and got to me. Until then, I was stuck. I wouldn’t be hearing from my radiation oncologist or my normal oncologist at the hospital. Paige was told the radiation oncologist “didn’t work here anymore.” But I had received my cyberknife treatment at the hospital where he was currently working. It sounded like they expanded and offered him a better position. Paige was told that, regardless, an appointment would be set at discharge. It wouldn’t be: I would come home from the hospital without an appointment to see him. The paperwork only contained his name, his old address, and a recommendation to see him. An appointment for my normal oncologist was set for the end of the month, which seemed forever away, but there was no changing it (I called at home and tried– it was a no-go).
The sleeping pill on Wednesday night worked wonders. I woke up early Thursday morning and was waiting on the doctor’s rounds. He came with the nurse practitioner later than I expected. I mentioned the hiccups since they were so terrible. He recommended I plug my ears for 30 seconds. I didn’t push him on anything else since I really didn’t think this guy was helping me very much. I just wanted to go home and see my typical doctors. After they left I asked for the discharge nurse and called Paige. I was home by 12:15pm.
The first thing the kids told me in the car was that I was a silly-billy for knocking on the window like that. Apparently, nothing scared them. They watched the fire trucks and the ambulance pull up from the second story window in Mina’s room.
It’s hard being home. It’s not like my first hospital visit. Now I have the creeping thought of “What if I have a seizure?” every time I go to do something. I’m scared to do anything alone. I’m googling seizure apps and am looking at smartwatches. I keep hiccuping. I’ve discovered it’s a side effect of the Decadron. I got a pill to try to take care of that, too, but it took 3 hours for it to work last night and might have some psychotic side effects (great).
I can’t sleep– I guess I’m starting over with this steroid stuff. I was awake at 4:15am and decided to start typing this.
We’re on pins and needles waiting on Monday afternoon’s appointment.
We had the appointment. I’m fighting necrosis now– dead brain tissue caused by the cyberknife treatment I needed in order to clear out the cancer cells from my brain. The swelling was not caused by a cancer recurrence, so that’s the good news. I’m trying to come to terms with this newest setback. The doctor confirmed that under South Carolina law I won’t be able to drive for six months. I have an MRI scheduled in three months to check progress. If it worsens, then I’ll need to have a procedure done at Duke or Wake Forest to clear away the dead brain tissue. COVID is going to make this very hard on our family.