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.
The kids’ pinwheel that I shattered when I collapsed.
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.
Leaky Presta valve and hex multi-tool.
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.
Wee-Ride Off
Tag-along on
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.
View from where I fell into the bush after flailing at the window.
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.
UPDATE:
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.
I’ve written before about the True Self. It’s something I come across in many works– spiritual, self-help, even books on sports psychology. Being in this flow of the True Self feels great, like a heavy burden has been lifted. I think our daily lives in this modern time (before COVID) make it very difficult to go into this state, but it is achievable if approached with great intentionality. (Side note: There is no “false self”, there’s only a shadow of the True Self. But when you view things from a lens of True Self and see lying, deception, manipulation, and selfishness it becomes easy to think that a “false self” is a real thing. I think HBO’s Succession should be subtitled How To Be The False Self.)
Today, I believe the biggest obstacle to achieving this state are the limitations required of us due to the COVID pandemic. Wherever you lie on the spectrum on caution during this time, it’s impossible to go about your life with the choices you had, say, a year ago. You can’t gather with friends, except with very careful precautions. You can’t strike up a conversation with a stranger on the street and shake his or her hand. You can’t even take a walk without being cognizant of physical distance and face masks. I heard someone on a podcast say something to the effect of, “I’ve never been so afraid of the word ‘droplet’ in my entire life.”
If you read one book, watch one movie or show that I talk about on this blog: WATCH THIS DOCUMENTARY. You can stream on a PBS app or you can just click here.
This past Monday (4/27) PBS aired a documentary on their Independent Lens program. Jim Allison: Breakthrough serves as a part biography and part history of cancer treatment. Although the documentary is an hour and half, it feels like it goes by in 20 minutes.
Jim Allison is the reason I’m alive and well today. His work led to the development of the drugs used for all immunotherapy treatments. He spent half his life chasing his own theory on effective cancer treatment and then finally found an indisputable medicine using the body’s own immune system. But just because you have a cure for cancer doesn’t mean it gets made and distributed. Allison has dedicated the rest of his life (not just professional career– his life) to making sure that this treatment got developed and distributed. And it was quite a war.
One of the things this documentary shows to you is that even with incredible breakthroughs and solutions, it still takes the mechanism of the business world to implement those solutions and put them on the streets. Many times businesses don’t have the courage to do it. It’s much safer not to spend the money, not to take the action, not to incur the possible liability. We live in a very real vetocracy. It’s a system that nearly kept one cure for cancer from getting to cancer patients! Jim Allison, for very personal reasons, refused to let his cure die on the vine. And he wasn’t alone– there had to more champions within business to make this happen (specifically, Dr. Rachel Humphrey).
The documentary also features someone who was diagnosed with melanoma in her 20s in the early 2000s. This was before immunotherapy had been accepted as a possible treatment for melanoma. Despite conventional cancer treatments, the tumors spread to her brain, leaving her with metastatic melanoma– my same diagnosis. Through various twists and turns, she becomes one of the first patients to undergo immunotherpy. Her tumors disappeared. Completely.
There is a chance moment when her doctor gets to introduce her to Jim Allison, the inventor of the treatment that cured her. In recounting that meeting, she says these words:
I just couldn’t talk.
How in the world are you suppose to adequately thank somebody, standing across from you, that you are 100% positive that without them you wouldn’t be here?
There is no “thank-you” for that.
Sharon Belvin
Those words touched me. They have a lot to do with what I write about in this blog. This sense of “There is no “thank-you” for that.” I’ve called it grace. Maybe it’s something that can’t be contained in words at all– something ineffable. But it is real. I’m living proof.
Again, WATCH THIS DOCUMENTARY! Look for Jim Allison: Breakthrough on PBS’s Independent Lens series, or click here. You’re in for quite a ride. Jim Allison does not project the scientist-curing-cancer vibe you might imagine!
I am grateful for my cancer. Cancer has taught me to focus on the moment. No matter what happens to me, nothing can take away the moments I’ve lived in. It is impossible to fully take in a moment without love. Without love there is no inner peace, there is no stillness. Can you imagine fully appreciating a hot shower, a quiet walk, or looking out at the stars without love?
I’ve read that 99.9% of our universe is composed of empty space. But I don’t think so. I think it’s composed of love. It’s hidden in plain sight, right in front of us, waiting to be taken in.
Yes, there is also great suffering. But suffering can show us how love unfolds. It can show us the infinite dimensions of love.I don’t know why we need suffering to really see it, but we do. Suffering forces us to focus of the moment with sharp resolve.
There was once a man who was running in through the jungle, chased by a hungry tiger. After breaking through a clearing, he came to the edge of a cliff. The long fall into the river below would be fatal. The tiger forced the man to stumble and fall but he grabbed onto the edge of the cliff with his hands. The tiger was relentless and started for the man’s hands. The man saw a branch growing from the face of the cliff just below him and he managed to grab onto the branch with his hands. Dangling from the branch, the man saw a plump strawberry had sprouted out of some greenery on the branch. Hanging on to the branch, he reached out and grabbed the strawberry and popped it into his mouth. “This strawberry tastes delicious,” he said.
I remember the first moment we decided that we were going to shutter-in because of COVID. It was March 13th and I ran some errands. I was at Publix and I felt like I knew a secret no one else did– I loaded up on food and milk to get us through what I hoped would be a couple weeks (it wasn’t). It was a Friday so it was easy to slide into a typical weekend routine and just tell the kids we were eating at home and not going out for meals.
Then we woke up on Saturday and it’s been the same day ever since. No work to go to, no school for the kids.
I’ve got the flu. It was very bad Tuesday night and all of Wednesday. When you’ve got flu-like symptoms no one wants to see you. The cancer center didn’t want me to come in at all even though this is the lowest I’ve felt since my fainting / fever spell in December. I considered going to the emergency room. I went to urgent care and strange enough, I tested negative for flu. The doctor immediately starting talking about false negatives. The paperwork I left with still says I have the flu. I know what you’re thinking– don’t think that. It’s not. Is it some universal joke that after I survive the big C-word that now’s there’s another c-word that’s scaring everyone? Another c-word. Great.
[Preface: I have amazing support from my family, Paige, my church, friends, doctors & other health professionals. I am lucky. But it’s still a struggle.]
“It’s a terrible thing, I think, in life to wait until you’re ready. I have this feeling now that actually no one is ever ready to do anything. There is almost no such thing as ready. There is only now. And you may as well do it now. Generally speaking, now is as good a time as any.”
Hugh Laurie
For me, the revelation came after a sequence of words. Like a certain combination and cadence unlocked a door. “You’re not feeling yourself today, are you?” That was what my nurse asked at my latest cancer center check-in. Before the question was even done I felt the tears welling up in my eyes and then hot streaks down my cheeks. “No,” I answered weakly.
On Monday I had to go to the DMV to register a vehicle. I had planned for it to take the entire morning. Most depictions of the DMV regard it as a sort of place of misery and torture- it’s comically referred to as hell and the workers there are often cast as uncaring, cold, and lovers or bureaucracy.
But for me, the second I walked into the office door, it was completely different. Yes, there was a long line, but I like lines and I am carefully not to take out my phone during lines (I’m a believer in the right to be bored). The line twists around in a strange way that it required some pacing around to find the end. Once there, I saw other people come in and do the same thing. The line snakes in front of the entryway so people in line had to move for the door to open. As opposed to being annoyed or giving off frustrated sighs, people gladly moved and helped others find the end of the line. When I looked around I saw every sort of person in the City, every color, well-off and not-so-well-off, lots of different nationalities. People were being friendly in line and making each other laugh.
I think the last time I was in a public place for government business was to vote. The lines and demeanor there was completely different. Everyone tight-lipped. Anxious sighs and glaces at watches. People guarding their space carefully and making sure no one cut the line.
The DMV was a welcome change. A lady in line in front of me helped a younger gentleman with all of the paperwork he’d need to complete his task. He realized he was missing some items and left the office. The lady called out from the door, “And you’ll have five days to change your insurance!” She’d either just been through the same thing or was an expert in DMV procedure. I got to the line and told them why I was there, showed them I had the paperwork, and got a ticket. I took a seat and waited. I was called up and the nice lady at the counter helped me out and asked if I was ready for Valentine’s Day. This is how cancer survivorship can just come up in conversation. I told her I wasn’t sure, we’d been talking about just agreeing to not doing anything given our state at the moment, and it’s been rough going for a bit. She genuinely looked concerned and asked why, and I mentioned survivorship. She was sympathetic for me, but still urged me to do something for my wife like cook a meal or get her something small. She had this conversation with me while working on all my paperwork. She finished and wished me well, as I did to her, and I was on my way. I actually really like the DMV.
There is a certain form of a secret handshake among survivors. A knowing nod. A recognizable depth to the eyes. When a person has gone to the edge of the unknowable and yet is still present in this world, that person cannot hold themselves the same.
Survivors speak the same language. Cancer has its own vocabulary. While some forms might require new terms or lingo, we still understand each other– like an American and a British person speaking to one another.
One afternoon I was in a doctor’s exam room. It is actually one of Paige’s doctors. This doctor in particular had advanced stage breast cancer and was absent from her practice for a long while. Eventually, she returned as a survivor but forever changed. On a checkup, Paige heard her story. Then when everything happened to me, Paige told her my story. The doctor and I actually have the same oncologist and radiation oncologist. I remember sitting in that chair and drifting in and out of sleep, exhausted from the high-dose steroid fatigue and lack of sleep.
