Sick Life Dude

2024

A 100% true story about life and sickness, written by a dude who endures the tragedy, laughs at the comedy, and loves the absurdity.

We were living in Ottawa at the time because, well, that’s the kind of people we are. We both found ourselves unemployed a few months into the pandemic and so decided to go try out the inter-Canadian migratory experience for a while. So we got rid of all our furniture, packed the car full of clothes, pots and pans, computers, and life’s little knick knacks, and headed East. We left with an open-ended plan but ended up staying a year. It was quite pleasant; A few ups and downs, sure, and it did feel a bit pointless at times, but it’s not like either of us came home with cancer or anything—at least not that we were aware of.

THE END OF PERFECT HEALTH

On December 30, 2020, I woke up more than a little dizzy and nauseous. When I opened my eyes, I had the sensation of having just spun around on the spot really fast: the room around me spun on a wobble, sending that churning feeling to my stomach. I rolled over and buried my face in a pillow, trying to ignore the sensation and get back to sleep. But seconds later I was sitting up straight and then stumbling as quickly as I could to the bathroom for a puke. After finishing up I expected some relief, but none came. I just sat there on the edge of the tub in the spinning bathroom, waiting for it to stop. About an hour later I finally made it back to bed. Ana, my wife since 2016, brought me a bucket, because from then on moving my head an inch would induce more vomiting, which quickly became dry heaving.

After talking things over with a doctor and a nurse on the public health telephone line, I was advised to go to the hospital. There was nothing else for it but to call an ambulance. I’m stuck in bed, and I can’t move—certainly can’t drive. So I make the call.

Overall, it is not a fun trip to the hospital. There is a pandemic going on, and the waiting room is chock full. After four hours I get called in to see the doctor. I’m in a wheelchair because I still think I can’t move, but the paramedics had given me so much Gravol I could have easily been on my feet.

The doctor was quite nice, but he didn’t seem to see the gravity of my situation like I wanted him to. “Have you heard of BPPV?” he asked. “Benign positional paroxysmal vertigo?” Of course not. “It’s not uncommon,” he went on. “In the inner ear there are three semi-circular canals. Each one contains little balance crystals, which sometimes, as in your case, can come out. When this happens your balance is impacted, and so the idea is to get these crystals to go back where they came from. To do this, you need to do a specific head maneuver. The kind of maneuver depends on which semi-circular canal the crystals came out of. In most cases, the Epley Maneuver will work.”

“Ok,” I replied. “How do I do this Epley Maneuver?”

“You can easily find a step by step video on YouTube. But we’ll also set you up with the balance clinic, and they’ll call you to arrange an appointment.”

“Ok, and when will that be?” I inquired.

“I can’t really say. Probably a couple weeks, maybe three,” Replied the doctor. I was silent for a moment, wondering how long until my life would go back to normal. “Ok?” queried the doctor. “All good then?”

“I suppose.”

Back at home that evening I was able to find a number of helpful videos about the Epley Maneuver on YouTube. I quickly learned it and did it a couple times before going to bed. I didn’t realize it right away, but this maneuver makes all the difference—it is practically an off switch for this type of vertigo.

Over the next few months, I developed some new symptoms that I look back on as minor annoyances, all things considered. For instance, for the better part of three years I had this whooshing sound in my ears — pulsating tinnitus — as if I could hear my blood pumping. I also got an intense pressure in my head every time I tried to exercise, particularly if I did push-ups, the plank, or if I went for a jog. As for vertigo, I had seven or eight more episodes until the last one in November 2021. For a while these really got the better of me, leaving me weak, nauseous, dizzy, unstable on my feet, scared, and without the confidence to leave the apartment for weeks at a time.

But eventually vertigo became something I learned to live with. For instance, To this day I don’t sleep on my left side, as that is a position that encourages the balance crystals to become dislodged. Once I figured that out, nearly a year into it, the episodes basically stopped.

More presently, with the coming of Spring, while the vertigo attacks were still new and debilitating, I learned a new trick to help get me solidly back on my feet. I had always been into hiking, but only for the reward of reaching the top and enjoying the view. During these times I learned to really appreciate and crave the actual grueling grind of a hike. I’d always use trekking poles, which grounded me with two extra limbs, making me move like a spider, slicking across the hillsides and up and down the mountains. With each step I could feel myself regaining the power, balance, agility, and confidence necessary for both a challenging hike and a fulfilling life. In the early Spring I focused on the trails and hills around Ottawa, but by the end of April I was venturing out into more mountainous areas with higher and steeper elevations. The feeling was miraculous, and  it was addictive, as if I were learning to walk again by hiking. Each foot planted firmly on the ground in front of me was a firm stamping out of all that hindered me, as if nothing could ever stand in my way again.

THE BLINDING BEGINS

Sometime that Spring we decided we would make our way home at the end of the summer. Not for health reasons or anything; apart from the sporadic vertigo attacks, a general unsteadiness on my feet, the whooshing sound in my ears, a semi-permanent nausea, and the inability to exercise, I felt totally fine. During those winter months at the start of 2021, I had paid a number of visits to walk-in clinics, which always led to the same conclusion: after a blood and urine test, there seems to be nothing wrong with you. So I figured I’d just live my life as normal—what other choice did I have? I’m twenty-five. I’m getting old. This is life.

After spending May, June, and July exploring Ontario, Quebec, and New Brunswick (the pandemic prevented us from visiting the other Atlantic provinces or the United States), we sold all our furniture again, repacked the car, and headed west in mid-August. As with the way there a year earlier, we took just over two weeks to get home, making a point to see the country.

We arrived at home, back in South Surrey, BC, in early September, and into our own little apartment uptown White Rock in November 2021. I had my last vertigo attack in that apartment, and then my health stopped being on my radar 24/7. I still had those annoying symptoms, but I got so used to them they became simple facts of life for me, like boogers or farts.

The following year, in September 2022, I began the teaching program at Simon Fraser University. Around this time, I was doing a lot of reading in the various coffee shops that surrounded us, something I had always wanted to make a habit of. I soon suspected that my reading was getting slower, but I didn’t understand why until, one day in late October, I noticed little blurry spots in the mirror. These spots were small, but they got bigger the closer I moved my head towards the mirror. I later came to realize that I had a blurry patch right over my central vision in my left eye, and this made it difficult to focus on anything small like text or that one little nose hair I was trying to pluck. For everything else, I could see fine, and I continued to live normally, not wanting to interrupt my life again for an annoying health complaint—that is, until my last round of golf.

We had some unseasonably sunny weather that Remembrance Day long weekend (November 11th), and so me and three friends – Miller, Nick, and Garrett – decided to go on a mini golf trip to Chilliwack: three rounds of golf in three days. We took my car and I drove. The first two games went well, and I had no trouble following and finding my ball. But on the third day, November 13th, my twenty-seventh birthday, things came apart. I couldn’t find my ball on a single hole, and for well over half of them I needed help finding the flag from the tee box. What’s more is that, on the drive home that evening I had mentioned that it makes it all the more difficult to drive on this crowded highway now that they’ve removed the white lines between the lanes. The response I got was silence, followed by “Umm… the lines are there.” I gave my head a shake and rubbed my eyes violently.

“Alright, alright,” I said loudly. “I’ll see a doctor tomorrow.” And I meant it.

“…Should one of us drive?” suggested Nick.

“No,” I said absentmindedly. “Shut up.”

At this point in the pandemic, it was still difficult to get in to see a doctor at a walk-in clinic in South Surrey. And because I had no family doctor, my choices were limited: go to Emergency, schedule a telephone appointment with a general practitioner, or go see an optometrist, which would cost about $150. I decided to see the optometrist, mainly because I lived across the street from one, and it seemed like the quickest option.

I was able to see an optometrist the day I called, but once there it took them a long time to figure out what was going on. At the end, this is what I was told: “You have a little piece of skin at the back of your eye that is growing into your macula, obstructing your vision. It’s not uncommon, but it would require surgery to remove. Now, your vision isn’t that bad. I suggest we keep an eye on it for now, and if it gets worse or starts to bother you, then come back and see us.” After sitting there for nearly two hours as they took various pictures and measurements, blew puffs of air repeatedly into each eye, and made me read all these eye charts and identify shapes, colours, words, and Images, I was pretty irritated with this conclusion.

“What will you do when I come back saying it’s worse?” I asked.

“Then we’d refer you to an ophthalmologist,” she replied.

“Ok, can we just do that now? Because it already really bothers me, and I think it’s getting worse.”

“Certainly,” she said sweetly. “I’ll get that referral started for you right away.”

It was now mid-November; my appointment with the ophthalmologist was scheduled for February 2023.

Over the next three months my vision would continue to get worse at a steady but not necessarily alarming rate. And because I now had reason to believe that it would be temporary, there was no need to panic. I had done some Googling and found that the condition the optometrist was most likely referring to was macular pucker. It didn’t seem that bad, except that the surgery involved draining all the fluid out of the eye and then replacing it with artificial fluid. This I would tell anyone who would listen over those three months.

For Christmas that year the whole family decided to go to Nelson, where my Grandparents live, as well as my sister and her family. Ana and I drove there in our car, in the snow, and for the last two hours, in the dark. She doesn’t drive, so the pressure was on me to get us there. Although she can be quite helpful from the passenger seat.

Nevertheless, this is where I set a rule for myself: I cannot drive in the dark. From Castlegar to Nelson I did not go faster than 40 kilometers per hour, despite the speed limit of ninety to one hundred and the giant trail of cars behind me. And Ana had to tell me whenever the road curved, or we would go shooting off the mountainside into a snowy abyss. On the way home we split the drive up into two days, so we could do the whole thing in daylight. And that was my last time driving out of town.

Before we left for Nelson, we had moved out of our uptown apartment and back in with my parents. Again, not for health reasons, just because we were both going to school again now and we wanted the opportunity to save money.

In January my first practicum began, and so I spent most of that Spring semester in a social studies classroom at Clayton Heights Secondary, a high school near the Surrey-Langley border. Learning to teach with declining vision became the ultimate goal of my education.

In February my long-awaited appointment with the ophthalmologist came and went. The doctor looked at the images of my eyes, showed me a picture of something red, asked me, “Does this look red?” and that was it. He said I needed to see a neuro-ophthalmologist, and that the referral would be for some time in March.

“So there isn’t a piece of skin growing into my macula?” I asked.

“What? No,” he replied in a busy voice. “That isn’t it.” He was standing at a computer, typing in a hurry. “We need a neuro-ophthalmologist to diagnose this.” He went back to typing, and then added, “It’s nothing in the eyes themselves. Most likely the optic nerves.” I forget exactly when, but sometime between Christmas and this appointment my right eye had started to follow suit with the vision loss; the blurry patch again first appearing in the center and then slowly expanding outward.

Before that upcoming appointment with the neuro-ophthalmologist I made two new rules for myself regarding driving. The first was that I would no longer drive anywhere unfamiliar. The second was, a few weeks later, that I would no longer drive at all; it just became too dangerous. I enrolled in Metro Vancouver’s HandyDart program, a door-to-door bus and taxi service that takes you where you need to go within your municipality for three dollars a ride.

A DIAGNOSIS

On March 3, 2023, I arrived at Clayton Heights Secondary with my lesson planned out and ready to go. My vision was blurry but usable. If I looked you in the eye I couldn’t see your face; it was just a smooth, skin-coloured blob on top of your shoulders. But if I looked one or two feet above your head then I could make out its details in my lower periphery.

I got to my classroom at the end of the upstairs hallway and set my briefcase down on my desk. Time to prepare for my class, which I would teach after lunch. Not much to do, really. Just need to go down to the copy room and photocopy my handouts. After I had those sorted into a small pile, I sat back, drank my coffee, and waited for the day to start.

During the first class of the day, which my supervising teacher taught, I borrowed her printing card and headed down to the copy room. Once I had finished, and was walking back to the classroom, down that same second floor hallway, I was hit by a sudden dizzy spell, accompanied by a shaking in the knees, numbing in the lips and mouth, a severe headache, and momentarily extra blurred vision. My heart rate also seemed to spike, and I was, for a moment, shrouded in confusion. This all came on at once and had me searching frantically for a place to sit. Luckily, these hallways were lined with benches, except they were placed so that the railings, which prevented falls down to the first floor, were right where a headrest would be—so that when I sat down and leaned back, I smacked my head on the metal rail, compounding the headache, numbing, and the blurred vision.

Astounded, I sat there a while and had a good think. What was happening to me? Why all these symptoms at once? Just suddenly like that? After fifteen minutes or so I felt fine, but I was still angry with the school for arranging these benches like this, and I was scared about the implications of what I had just experienced. My heart was still beating pretty fast and I wanted to talk to a doctor.  Should I go home? I wondered. Or should I stick around and teach my class? The incident is over now, I reasoned. I can always go to the hospital if it happens again. Or I could just go to the emergency room once I get home.

So that was that. I decided to stay for now. Just a quick scare, no lingering pain, walk it off and get back to the classroom. I stood up and started walking, my photocopied stacks in hand.

The rest of the day passed without incident. There were no more dizzy spells or numbing in the face, no weakness in the legs, and my vision went back to its normal poor state and stayed that way. When I got home, I just ate dinner and then took a cab to Peace Arch Hospital and checked in at the emergency room, where I arrived around 6:30pm.

I only waited about an hour to get in. When I told the doctor the story, he asked me why it took me so long to get seen. I told him I kept trying to tell doctors at walk-in clinics about my symptoms, but no one thought it warranted anything more than a urine and blood test. As for the declining vision, I was always waiting for another appointment.

“Have you seen a neuro-ophthalmologist?” he asked.

“Not yet,” I explained. “My appointment is in a couple weeks.”

“Ok well, the neuro-ophthalmologist will order a brains scab right away, but we can do that right now if you like. It’d just mean sticking around for another 3 hours. That sound alright or do you want to do that later?” he asked.

“Yeah, right now is good,” I replied. “That’s what I’m here for.”

“Ok great,” said the doctor. “You sit here and get comfortable, and I’ll go get things started.” It was in fact a superbly comfortable place to sit; I was in a reclining armchair with a footrest and everything.

“Awesome, thank you.”

A CT scan only takes about five or ten minutes. The rest of the three hours is filled by waiting for other patients, the technologists to prepare the machine, and the radiologist to write the report, which they do by just looking at the image produced by the scan and dictating into a microphone. In most cases, the radiologist is the one making the diagnosis, since they are the ones who really know how to read and understand CT images. So an hour or two after my scan, the doctor came in carrying a few papers.

Here my memory is not quite intact enough to be able to piece together this entire conversation. I still want to give both as complete and accurate an account as possible, so for this next bit, I’ll just write down what I remember for certain was said.

“Eli,” said the doctor as he came in. “Your brain scan is not normal…”

“Ok…” I said, expecting him to continue. I knew it wouldn’t be normal.

“…Lots of tumours… Benign… Disease is called neurofibromatosis… Type 2… No cure… Not usually life threatening… You will have to deal with a number of symptoms like the ones you’ve already been dealing with, for your whole life. But you won’t be alone… We’ll set you up with a team of doctors and specialists to work with you… I’m sorry, I know this probably isn’t the news you were expecting to hear tonight… And frankly, neither was I. I’ve never diagnosed this before… It’s very rare.”

The doctor finished up by giving me a bunch of papers, including the contact information of some doctors I would be seeing in the next weeks and months. I thanked him for his help and assured him that I had been expecting some sort of diagnosis along these lines for a long time coming. I then made my way back to the entrance and called a cab to take me home.

It was now nearly midnight. There had been a lot of waiting around throughout the evening, which I spent keeping Ana up to date with what was going on. So by the time I got home there was nothing really to report. We just kind of understood each other, silently agreeing it was one of those nights where we would light a joint and walk to the cul-de-sac. She met me in the doorway, and we went out into the night together.

SOME HARD TRUTHS

Two weeks passed before I heard any follow up from my trip to the emergency room, which was ideal because it meant I could keep living as usual for a while longer—always my strategy in dealing with unwelcome health news. I then got a call from a neurologist while I was observing a class at Clayton Heights. I slipped out of the room and answered the phone.

I remember feeling really good after this call, but not actually receiving any good news. We talked for about half an hour, as the doctor gave me an introduction to neurofibromatosis, NF2 from here on. She told me that I can expect things to progress slowly, as tumour growth would be slow. I would need to get an MRI right away, and I should also get one of my spine, since it is common for NF2 patients to grow tumours there, too. The basic strategy she presented was to constantly keep an eye on things, and to continually manage symptoms with prescriptions, surgeries, or other treatments. “New tumours will grow, new complications will arise, and we will search for new management or adaptation strategies.” She made it sound simple. She said that while she was happy to be my lifelong neurologist, she would not be my main doctor, as I would meet several more specialized doctors in the near future that I would work with more closely.

At the end of the call, she left me with a feeling that I was in extremely good hands, and that a lot of really capable people were looking after me. She didn’t actually say these words, but somehow, I was led to believe that pretty soon we could do some surgery to restore my vision, which was still the number one thing on my mind in those days.

The next doctor I was introduced to was a neurosurgeon at Vancouver General Hospital. I got a letter in the mail telling me the date and time of my appointment. It was still mid-March, and the date was scheduled for April. I had never had an appointment scheduled like this before, without consulting me about my availability. It made this doctor seem super busy and important, as if to say: If you want this life-saving appointment, make yourself available—or else good riddance.

On the day of the appointment my Mom dropped Ana and I off at the Diamond Health Center, that tall skyscraper next to the emergency room at Vancouver General. In the waiting room there was one other couple, probably in their fifties. The man had a shaved head with a circular track of stitches near the top corner, behind one of his temples.

“How’re you two doing?” he asked. His voice was soft and kind, his tone heavy with an intimate sympathy for the four of us.

“Good,” we both quickly replied at the same time. “Fine,” I added, fearing we came on a little too positive, like we were here to fix the computers or something, not talk about brain tumours with the neurosurgeon. “How are you?” my training in automated politeness prompted me to ask.

“Not too bad,” he replied. “The worst of it is over, that’s a relief. But I still have a long recovery ahead of me.”

“Hmm,” was all I could muster.

“Hmm,” said Ana, thoughtfully. Uncomfortable silence was the reward for our social skills.

When we were called into the doctor’s office, he was not there. We took our seats in front of the desk and waited. It was a beautiful office. Much of the art was Japanese, which we figured based on the cherry trees, the writing, and his Japanese sounding name. We were on the twenty-somethingth floor, and Ana assured me that the view out the window was incredible: the downtown peninsula, the Burrard Inlet, and the North Shore Mountains all twinkling in the sunlight.

“Hello,” said Dr. Akagami as he came in. “Sorry to keep you waiting.” He took his seat at his desk across from us and got settled, turning on his computer and arranging a 3D model of a human skull, which came apart in all the places the brain could be accessed.

He started the meeting by opening up an image of my recent brain MRI, which I could hardly see, especially not in any meaningful detail.

“What’s interesting in your case,” Dr. Akagami began, “is that it is your vision that is first to be impacted by the tumours. In most people with NF2, it is their hearing that is first to go. Vision is usually only impacted much later—decades after diagnosis, if ever. And I do have reason to believe that hearing loss is something you will have to deal with in the not-so-distant future. If you look here and here,” he pointed to the left and right sides of the MRI image, “we can see what appears to be two small tumours on each vestibular nerve, which are very close to each auditory nerve.”

“Huh,” I said, skeptical, not really wanting to accept the proof, wanting to believe I still had decades before hearing loss kicked in.

“I recommend you start learning sign language and lip reading,” the doctor concluded. I furrowed my brow  and curled my lip at the absurd image of me learning to rely on my eyes to replace my ears but stayed silent. Listening to these words, spoken so casually, was like being waterboarded—there was that gradual, creeping drowning feeling in my nose and throat, while my body tilted backward in a numbing undertow that was putting me to sleep. Suddenly, I was having to deal with letting go of a lot more facets of life than my conversation with the neurologist had prepared me for. I mean, forget all the other NF2 stuff; if I’m blind and deaf, do I even want to live? I spent a good part of the meeting after that point trying to imagine myself experiencing joy, satisfaction, human connection, or fulfillment of any kind as a deaf and blind person. The harder I tried, the more my throat felt like it was closing in.

“What else is interesting,” continued the neurosurgeon, “is that it is not clear where your vision loss is coming from. There is no obvious tumour as the culprit. I am not even sure if it is NF2 that is causing it. I will need to talk with the neuro-ophthalmologist to determine whether it is possible to either restore your vision or else prevent any further loss.” Whether I viewed this information as good news or bad, I have no idea.

Here my memory again gets foggy, as emotion becomes the bulk of what was retained. I remember very clearly how I felt sitting in that chair, and I believe I remember most of the information I was told. But most of the conversation from this point escapes me, so again I walk the line between trying to tell the complete story while also wanting to stay as accurate as possible.

At one point Dr. Akagami started talking about what I can expect in the near and distant future regarding possible symptoms. He said that after hearing loss the next most common symptom was a drooping or loss of control of the facial muscles, which may or may not impact my eating or talking. In the distant future he said it was possible that I may require a wheelchair, but that cognitive impairment or memory issues were not typically associated with NF2. I asked him if this disease could kill me, and he said not usually, but it is common for it to take a few years of life expectancy, as it makes living in old age much more difficult.

As the meeting wore on, I was forming an image of myself as a blind, deaf, decrepit old man in my forties, unable to walk, slouching in a wheelchair with a sagging, structureless face, talking with a thick, drooling slur, eating without the ability to keep food in my mouth, obliviously spitting everywhere, yet with perfect cognition but nobody taking me seriously. Utterly written off as a conscious, sentient being; roped in with the dementia patients when I belonged with Stephen Hawkings.

Although it certainly took its toll on my mood, in the end this was a very helpful and informative meeting—and long. Nearly two hours. “I scheduled you in for a much longer than usual time slot. I figured you’d have a lot of questions,” I remember the doctor saying this near the end of the meeting, at which point Ana started firing off a bunch of brain related science questions while I sat there with my eyes glazed over.

My Mom picked us up where she dropped us off. A few minutes into the drive home I remembered I was hungry and that I had a sandwich in my coat pocket. I took it out and started unwrapping it. The sound of the crinkling wax paper hit my Mom’s ears like some sort of alarm. “Put that away,” she said. “No eating in this car. It’s gone its whole life without anyone eating in it and that’s not about to change. If you want to eat, I’ll pull over up here,” she said as she saw a spot to easily parallel park. “There’s a nice spot right here in the sun.”

I chuckled as I stepped out of the car. I’m going to be blind and deaf, and my face is going to droop and sag to the floor, and all that other stuff, but here is someone who really does not want crumbs on the floor of her car. I realized at that moment I would never again be able to care about the little things in life like that. I wondered if this would be a blessing or a curse.

THE DETECTIVE DOCTOR

It was still April 2023 when I finally met my neuro-ophthalmologist, who quickly became my main doctor. My vision loss was still a mystery to the neurosurgeon, and so it was left to this neuro-ophthalmologist to play the detective and figure out what was causing it. As long as we didn’t know the reason, I could not lose hope of one day seeing clearly again. So I spent the bulk of the summer juggling two or three appointments a week, along with the third semester of the teaching program. The neuro-ophthalmologist wanted to leave no stone unturned, so she sent me everywhere and set me up with every test imaginable.

Starting immediately, she put me on some vitamin B12 shots, which Ana had to administer. There were about fifteen of them, to be injected into my bicep once every other day. Vitamin B is good for the optic nerves, was all I understood. These shots gave me such a headache, and ultimately had no noticeable effect.

The next thing we did was a lumbar tap. That’s where they lie you on your front and stick a giant needle into the bottom of your spine to extract a bunch of spinal fluid, which, by the way, is the same thing as brain fluid. It’s all from the same reservoir; The fluid your brain floats in runs all the way down your spine. The reason they extract this fluid is primarily for diagnostics, but also to relieve headaches caused by high cranial pressure.

When I arrived for my procedure, again at Vancouver General Hospital, I was laid down on my stomach on the radiology table, with the live X-ray camera pointing at my lumbar. The first thing to happen is someone comes up and loosens my belt and yanks my pants down about four inches. Then the doctor comes and talks to me for twenty minutes, and I have to have a serious conversation and ask all the questions I had prepared with half my butt crack sticking out.

When the first needle goes in—this is a local anesthetic—I am awakened to a brand new sensation and a spot on my body I had no idea was there before. The pressure was intense, and although the pain was in such a tiny area in the small of my back, it caused my whole torso to seize up, briefly halting my breathing. Getting through it is purely a mental game; you just have to tell yourself to wait and not move.

Then the numbing needle comes out and the extraction needle goes in. Despite the anesthetic, the pressure is still insane, and this needle stays in for about half an hour as the doctor moves it around to get into all the little cracks and crevasses. In the end he extracts about ten milliliters, enough for a complete diagnostics test.

When the extraction needle came out, I exhaled two fat lungfuls of hot, pent-up air. Life without a needle in your spine feels just amazing, I thought to myself. I put my butt away and crawled off the table with considerable effort, as my body had become rigor mortis stiff from all the clenching. Ana met me in the waiting room, and we took the Skytrain and bus home. Needless to say, I did not walk normally for a few weeks after that.

I forget exactly how they run the diagnostics on spinal/brain fluid, but it involves checking the glucose and protein levels, as well as for bacteria, viruses, and fungi. In any event, my results were another piece of the puzzle in diagnosing my vision loss, but in the short term they really only created more uncertainty.

Around this time, still in April, I was invited to come into Surrey Memorial Hospital for a hearing test, called an audiogram. I didn’t really want to go, because my hearing was fine, but for some reason I agreed and made the appointment. Probably because it meant I could stop by Denny’s on the way home. At the appointment I learned I was going deaf already, before I even noticed anything. My right ear failed to correctly identify one-syllable words twelve percent of the time. This was kind of a sad day for me, given that I had just been told about the possibility of deafness less than a month before. But I didn’t dwell on it. I wasn’t going to let test results overrule my own living experience of how well I could hear. I could hear fine.

As the summer wore on, so did the search for answers about my vision. My neuro-ophthalmologist decided to have me tested for a rare eye disease called Lieber’s, which required special permission from the provincial government because of the rarity and high cost—$900 for a blood test. I failed that blood test, meaning the result was negative, which was a shame because that would have been a way more chill diagnosis.

Hitting a wall, I was then referred to an infectious disease specialist, who could look me over with fresh eyes and try to figure out what was causing my vision to deteriorate. He began by sitting down with Ana and I for a long interview about our lives over the last ten years, so that he could identify any possible risk factors for certain infections that may impact the eyes or optic nerves, and then set me up with the appropriate tests. I have forgotten most of these tests, but all of them came back negative. I do remember being tested for some sort of bird chlamydia, since we had a pet budgie in Ottawa, and for tuberculosis, since we took the train across Russia during our honeymoon in 2016.

So again, we were left with no answers, and I was losing my patience. However, I continued to see this neuro-ophthalmologist. the best thing she did for me was prescribe me a drug called Diamox. This drug is designed to keep the pressure in your head low by draining any excess brain fluid and disposing of it through the urine. I believe this drug can be credited for how long I was able to hang onto my deteriorating vision, and how long I continue to hang onto this last, tiny fragment of hearing. Today, it seems obvious that my vision and hearing loss are due simply to the pressure caused by the presence of so many tumours in my head, as well as the unfortunate locations of a few of them. This pressure chokes out the optic and auditory nerves, while the Diamox does a decent job of keeping the pressure down by removing unneeded brain fluid. This understanding was strengthened in October of that year, 2023, when my vision and hearing both slipped considerably as I went off of Diamox for nearly a month.

My last appointment that summer, before Ana and I took a break from all this healthcare noise to go travelling, was with a spinal surgeon. The appointment was over the phone. We went over the details of my recent MRI of the spine: There were seven tumours of note, meaning larger than half of a centimeter, and a smattering of tiny, inconsequential ones. We discussed the need for surgery on the biggest one. He was surprised that I had no symptoms from it, no arm or back pain or weakness in the limbs. He warned of quadriplegia and the irreversibility of letting this tumour grow out of hand. And given its location on the spine instead of buried in the brain, it was easily accessible and did not present an unacceptable risk to remove. But I was just not in the headspace to contemplate surgery on an area where less than ten minutes ago I wasn’t even aware there was a problem. It was my hearing all over again. My spine feels fine. I don’t want to do surgery unless I have to. Leave me alone and let me pretend I am a normal, healthy person for a while. That’s how I feel, minus the faulty vision.

He said he understood completely, and we agreed to talk again in September. In the meantime, I would call him if any symptoms at all materialized: Tingling fingers, pain in the back, arms, or legs, numbness in any limbs, trouble manipulating my hands, any changes in how I walked, etcetera. I thanked him, got off the phone, and got ready for our trip.

That August Ana and I went to Churchill, Manitoba, a barren town of 800 on the Arctic shores of Hudson Bay, well north of the tree line, and saw the polar bears and beluga whales. I could only make out the animals through binoculars, relying exclusively on the peripheral vision of my right eye, and I was able to see about half as many as Ana could, but what a thrill, nonetheless.

Two weeks later we went to Prince Edward Island, Nova Scotia, and Newfoundland. There we stayed in fancy hotels in the capitals, took tours through the legislatures, government houses, museums, and colonial buildings, and ate every meal like royalty. I knew this would be my last vacation with sight, and it was special to us because we had now been to every province and territory in Canada, except Nunavut. This was a huge victory for us, since this had been a goal of ours for a long time.

I can’t get over how good it felt, and continues to feel, to have finished seeing the country just before my eyes closed forever.

A BAD CASE OF THE PRE-BLIND AND DEAF BLUES

I had three months left of vision when we got back from our Atlantic Canada trip on September 2, 2023, and it pains me to think that I spent half of that time moping around and wallowing in bed, dreading what was to come. I did have a good September though.

Now that September had started, we both had work to do: Ana was starting her cyber security program at the British Columbia Institute of Technology (BCIT), and I was starting some computer skills courses for blind people at Vancouver Community College (VCC). I was supposed to start my final semester of the teaching program that Fall, and complete my certifying practicum, but I had lost too much vision to continue without knowledge of screen readers. My plan was to take one semester off and relearn how to use computers before completing the program the following semester. While I did this, I figured I would also learn braille. That way I could hang onto some form of communication if and when I did end up blind and deaf.

I stuck with this plan until the middle of November. In that time, I was able to get fairly comfortable navigating a PC without vision, but not yet proficient enough to complete my teaching degree. Today all I can really do on a computer is type, edit, read, and manage my files. I am also now fluent but slow in uncontracted braille, which is handy but rarely useful outside of elevators.

My vision and hearing throughout the summer of 2023 stayed fairly consistent. My left eye went out sometime in May, but my right held strong for a lot longer. The central blurry patch was always expanding, pushing into the usable periphery, but it was slow. And then it closed like a curtain as November became December. My hearing, meanwhile, gave me nothing to worry about until mid-October, and then I have never stopped worrying about it since.

My right ear had started to go back in April. The progression was quick but unnoticeable, since the left one remained perfect all summer. And having low or no hearing in one ear just didn’t bother me that much anyway. So, when I had my second audiogram in early October, I was not too upset to find out that my right ear was officially trash.

But then on October 15, I remember very clearly, my left ear dipped for about five days, and suddenly I could hardly hear a thing. This was a huge shock and sent me fast spiraling into a pit of despair. For the next few days, I carried an empty paper towel roll to school to hold up to my ear to try to hear people better. I must have looked like an idiot; but mercy, that is one care the blind get to leave behind.

For the next few weeks, the hearing in my left ear faded in and out, leaving my mood entirely dependent on how well I could hear that day. By mid-November it had settled in a permanently low state and has remained on a gradually decreasing trend ever since.

These events led me into the most bitter depression of my life. I lost my appetite, I refused to brush my teeth, my shower frequency fell to once every ten days or so, I wouldn’t get out of bed before four or five pm without a reason, and while I wallowed there, I didn’t even care to be comfortable. If I was lying in a position that hurt my neck or back or something, I remember it taking well over an hour to gather the energy and motivation to reposition myself. As the days wore on, I would just lie there thinking, I’m killing time, just killing time.

Not that this headspace dominated my life all day every day for two whole months—I still made it to school three days a week, and to all my appointments—but this was the general mood of the season. And there was something else keeping me down during this dark, desperate Autumn.

October had introduced to me two new kinds of pain, each one sapping the motivation to get up and face the day more than the next. The first was an arm pain that lived in my left bicep but frequently radiated down to my elbow, up to my shoulder and neck, and across my upper back. I spoke to my spinal surgeon about this, and he was confident the pain was being caused by that problem tumour we had talked about exerting pressure on my spinal cord. Before hanging up the phone, we made plans for the surgery to remove this tumour, but it ended up being scheduled for January. In the meantime, I took Advil, Aspirin, and Tylenol 1s (codeine) almost every day.

The other pain that October had in store for me began on the evening of the 9th. Ana and I were walking down the driveway, about to head out for an evening walk, when out of nowhere I nearly doubled over. I felt like I had been stabbed from the inside; the sharpest, most excruciating pain had just halted me in my tracks and made it nearly impossible to stay on my feet. The locus of pain was at the lower right flank of the torso, where the kidney is. “We need to turn around and abandon this walk,” I said. “I can hardly move… I gotta go sit down… Wow! I don’t know what this is.” Ana was gracious and kind.

“Ok let’s go back,” she said. “Can you get there, or should I get some help? Or I could bring you a chair and you could rest here a bit.”

“No, I think I can make it. I can just shuffle there. The house is right here.”

Back inside, the pain was so extreme I couldn’t sit down for more than a couple minutes, and it hurt even more to lie down. I tried for the next hour to get comfortable, but nothing provided the slightest relief. I was scratching my face and scalp in frustration, moaning like a mother in labour. Eventually Ana fell asleep, and I was left rotating between sitting on the armchair for a minute or two, trying to lie in bed for a few, kneeling on the floor and resting my face on the bed, pacing up and down the hallway, and going to the bathroom to throw up. I ended up spending the whole night like this. I don’t know why I didn’t just go to the hospital. I remember thinking it had to wait until morning; clearly, I was not thinking straight.

In the morning my mother drove me to Peace Arch Hospital, where I sat in the emergency waiting room clutching at my side and moaning like a drama queen. When I got in to see the doctor, I made sure I got my injection of hydromorphone right away. Then I had a CT scan to confirm it was a kidney stone and to get the measurements to see if it would pass on its own or if it needed surgery. It was only two millimeters, so it would easily pass. I got some pain killers and drugs to make it pass smoothly and quickly and then went home.

The annoying thing to discover was that kidney stones are one of the side effects of Diamox, that drug I had been on since May which was keeping the pressure in my head down. I was outraged. Why didn’t anyone tell me this? At this moment I didn’t even care about my head; I cared about pain. I had just spent the last twelve or fourteen hours in severe pain, and I did not want to go through that ever again. So, I did that really unadvisable thing and stopped taking my meds without telling my doctor.

With the pressure in my head running higher in the absence of Diamox, the tumours must have exerted more pressure on my optic and auditory nerves, because during the month of October, when I was off the meds, my hearing and vision both slipped considerably. But I didn’t care. My head was in a place where all I wanted was to avoid pain.

But then on October 30 I woke up with that sharp, familiar stabbing feeling in the kidney. I didn’t wait around; I called an ambulance instead of catching a ride with my parents. I was hoping the paramedics would give me a shot of hydromorphone right away, but it turns out they don’t carry painkillers.

When I got to the hospital it was the same routine as last time, except now the CT scan showed a three millimeter stone stuck in the left ureter, causing the pain, as well as a fifteen millimeter stone attached to the inner wall of the right kidney, which would require surgery to remove, since once it became dislodged it would be much too large to pass. So, I would have to come back on November 18 for surgery.

In the meantime, I talked to two doctors on the phone, both of them trying to talk some sense into me. My neurologist explained that in my situation, my head had to take priority over my kidneys, and if I didn’t see that then I wasn’t thinking straight. My new neuro-ophthalmologist told me that many of her patients use Diamoxe and that many had kidney stones at first, but by drinking enough water that risk can be almost entirely eliminated. All in all, I was convinced, and I agreed to go back on the Diamoxe. But the damage was done; by the day of my surgery my eyes were on their last legs, so to speak.

The surgery only took about an hour. Once I was asleep under the anesthesia, they first inserted a catheter, and then the doctor went up my urethra with a laser, passed the bladder, through the ureter, and into the kidney. Once there, he used the laser to pulverize the stone into dust, which I then had to pee out.

I woke up in a confusion, rather frightened to discover the catheter still in place. “Is it over?” I asked.

“It sure is,” a nurse replied. I got the impression there were several nurses walking around me.

“I have to pee,” I said.

“Go ahead and try,” she said. “The catheter automatically drains your bladder. It’s empty. That whole cup of pee is yours; I swear it isn’t mine.” I chuckled. “I’ll take it out in a minute,” she said. When she did, I got the sensation of spraying pee everywhere, but the spot remained dry.

Now it was my job to pee out the rest of the kidney stone dust, which hopefully would not contain shards. When I got the urge to pee again the burning, cutting feeling was quite the shock, but short lived. I quickly received an injection of hydromorphone and was able to pass the rest of the dust in under an hour.

When I got home the next morning I crawled into bed and continued my depression until the middle of December, fearing pain, taking Diamox, regretting getting off of it, and picking up my anticipation and dread of living blind and deaf where I left it. My right eye, always the good one, let in its last ray of light sometime between the last week of November and the first week of December 2023.

A TALE OF TWO SURGERIES

…THE FIRST ONE

It was early December 2023, and I was having an appointment with my new neuro-ophthalmologist, Dr. Sheldon. This appointment had become something of a counselling session, and she was really good to me. I complained that neurofibromatosis, NF2, was originally presented to me as a slow moving disease that would be with me my whole life without necessarily shortening it, but that this was not aligning with my experience.

“I feel like I’m falling apart,” I said. “I don’t see how I could possibly still be alive three years from now. I feel like a decrepit old man. I’m fully blind, I barely hear, it’s getting harder to walk, my balance is awful, and my legs just can’t keep me straight, I’m tired all the time, I’m super weak, and I just get the impression that I’m at the end of my days.” She seemed to take me seriously.

“It’s interesting to hear you say this,” Dr. Sheldon began. “I have been looking over your past MRIs recently, and honestly I get the feeling that your tumours are growing a bit too fast for NF2.” I froze up for a minute upon hearing this. I guess I was complaining in hopes of better medical outcomes, not a worse diagnosis.

“So, uh,” I stammered, “what do you think that means?”

“Well,” she replied, “I am going to set up a conference with all your doctors and we will discuss our possible options. There is one treatment I have in mind, although it is hard to get approved for the funding. It’s called Avastin. It’s a bit like chemo, except it has been known to work on NF2 patients. But we would need to prove to the ministry that you for sure have NF2. That would mean getting a biopsy of one of your brain tumours, so a quick brain surgery, if you’re into that. But I would need to confer with your neurosurgeon before we can get that ball rolling,” she concluded.

In the end, I was quite happy with this appointment; I complained and got an instant, meaningful, actionable response. And she’s going to organize a conference where a bunch of doctors are going to discuss my health. What a good doctor, really listens to and cares about her patients.

Sometime in the second week of December I got a phone call from my neurosurgeon, Dr. Akagami. All he said was that I was to have a biopsy at Vancouver General Hospital, and that I was to report to the emergency room there by 3:00pm on December 18 and come prepared for a four to six night stay. He also told me he would not be performing the biopsy; it would be his colleague, Dr. Fatehi. All Dr. Fatehi would have to do was make a small incision into the side of my skull and then stick a needle into one of the tumours to extract some fluid, which would then be tested. The assumption was that this test would prove conclusively that I have neurofibromatosis, clearing the way for me to get the Avastin treatment.

“Seems chill enough,” I said over the phone. “I’ll be there, thanks for calling.”

On the 18th my parents drove Ana and I to Vancouver General Hospital, perhaps the nicest facility in the province to have surgery. We checked in through the emergency room and then got settled into a little curtained off area with a bed up on the fifth floor. We then just kind of waited for tomorrow, perplexed at why we had to arrive a day early. But the time passed, and pretty soon visiting hours were over and Ana had to leave. She would be staying the nights with a classmate and his girlfriend, who lived a few blocks from the hospital, a very convenient arrangement for us—especially for me, as Ana made my time in the hospital a pleasure with her conversation, errands, and help with eating and drinking. It can be super dull lying in a hospital blind and practically deaf, which renders pretty much all entertainment devices useless. I could talk on the phone with patience and an equally patient conversation partner: someone who agreed to talk slow, loud, clear, and with enough space between their words. But otherwise, my only source of entertainment and comfort was a living, breathing, willing human to sit with me in the flesh.

My surgery got underway the next afternoon. The preparations took forever. First, they cleaned the hell out of my nostrils, which felt like a couple of those deep nasal COVID tests. Then they hooked up two IVs to my arm; one for the anesthesia that would keep me sedated, and one as a backup. Then they jabbed my wrist with a lidocaine injection to numb it up for a much bigger injection, which I suspect went about five inches down my forearm, starting from my wrist. This needle they left in there and attached the exposed end to a small box about the size of a pill bottle. This would let them easily draw blood at any time, as well as keep an eye on some of my vital signs.

After that I was all set up on the operating table and ready to go. Dr. Fatehi introduced himself and gave me a quick recap of the procedure, and asked if I had any questions. I said I didn’t and then the anesthesiologist came back to say lights out.

I was supposed to be out about two hours, but I came to in the recovery room five or six hours later. Where am I and where is my underwear? I asked myself as soon as I became conscious. Why do I have a friggin catheter in? Nobody told me this. “Hello!?” I inquired loudly. “Is anyone here? Ana?” No one addressed me, but I heard voices.

“He’s shaking a lot, eh,” one nurse said.

“Yeah, that’s fine, it’s normal,” another replied.

“Why do I have a catheter in?” I called out.

“Oh, he’s awake,” I heard a voice say. “So you can pee,” called the voice. “Your surgery went a bit long, so we needed to let you relieve yourself.”

“Am I ok?” I asked. “Did anything go wrong?”

“No, not at all. Everything went fine, but I’ll let the doctor talk to you about it a little later.”

“Is my wife here? Can she come in?” I asked.

“She is here, but she can’t come into the recovery room. Once you are done in here, once we’ve deemed you sufficiently recovered, we’ll send you on to the neuro ICU, where you’ll complete your hospital stay for a few days. She can meet you there.”

A couple hours later I met Ana in my room at the neuro ICU—Intensive care unit. After having waited around nervously all day, she was sure glad to see me conscious and alive. “I thought things had gone horribly wrong. You were so much longer than they said you’d be.”

“Yeah, I dunno what happened,” I said. “They said everything was fine. It’s probably just harder than it looks, extracting fluid from a brain tumour.”

It would have to wait until morning to find out what the delay was. For now visiting hours were ending, and I was having a bit of pain set in. I was given an injection of hydromorphone, which made me puke pretty quick, although it did take the pain away. And then Ana had to leave for the night, and the nurses wouldn’t give me dinner because they thought I’d puke again. Good thing Ana left me some granola bars.

Before I settled in for bed I was to be bathed. I am telling you there is no privacy for a blind man in a hospital. Not that I had much need for it—Why do I care if something I can never see sees ne? But it is a bit unsettling the first few times, nevertheless. Two nurses approached me and said, “it’s time for your bath.” It was a statement, not a question.

“So…, yeah?... ok…,” I was curious about how this was going to go. All of the sudden my gown was just simply lifted off of me and I was lying there naked, two female nurses standing next to me on either side, making light conversation:

“What did you do for work before you went blind? Do you have any kids? How did you meet your wife?”

And I’m just lying there, feeling the warm, soapy cloths massaging, warming, soothing my shoulders, forearms, chest, neck, ribcage, pelvis, hips, back, thighs, knees, calves, and feet. Meanwhile, the question that is running through my mind is: Is this really covered by the Medical Services Plan?

Good deal.

I awoke the next morning to some shocking news. The resident doctor wanted to share with me some information about my surgery. He had been in the operating room with us, but he didn’t seem that informed.

“So, Elias, am I the first to tell you that you don’t have neurofibromatosis ANYMORE?”

I was silent for a minute, not sure if I should trust this guy. “No” he continued. “, it was never NF2, it’s always been skin cancer, since the first tumour started to metastasize. Does that make sense? Do you have any questions?” A couple questions came to me in my confused, tired state.

How big was the hole you made In my skull?”

“About the size of a looney,” he replied.

“How did you seal it up again?”

“Two thin sheets of titanium. And then we put the skin back, closed it like a curtain, and stapled it in place. There’re about eighteen or so staples under there.”

“When can I take the bandage off?” I asked.

“About five days.”

There was a pause as I couldn’t think of any more questions—not even the one about why the surgery went long.

“So it’s looking like melanoma,” the doctor said. We got some dermatologists outside waiting to talk to you and give you a look over to try to discover a source.”

“Ok, thank you.” I said.

“You take care now.” And he went out and let the dermatologists in for what would be a long, intimate interview.

The dermatologists were a man and a woman, in their forties and fifties, I think. They explained that the initial results of my biopsy showed a possibility of melanoma, so they were here to follow up with that suspicion by searching my body for moles caused by the sun. And again, just like last night, my gown was simply lifted off of me and I was lying there naked and helpless. I cared much less this time, as I was used to this now. As fingers started crawling all over me, I closed my eyes and tried to imagine I was at a spa. The search started at the shoulders and then went down the legs, and then did the back, and only turned to the bits that make you giggle at the very end. When they started exploring my crotch, I couldn’t help but mention that “I am pretty sure there is a slightly raised freckle on the underside of my scrotum. But I’ve never done any perineum sunning, so I cannot imagine that one being  caused by UV rays.”

“We’ll take a look,” the male doctor said very seriously. I think he thought I was messing with him, because he was a bit rough there; I felt him stretch out all his fingers and actually lift my lower body clear off the bed by my scrotum.

I guess they decided nothing about that one, because they didn’t say anything about it. Finally, they said, “lastly, if you could roll over, it’s time for the buttocks,” and then I just quickly rolled over once to the left, and once to the right, felt some combing fingers trying hard to be professional, and then it was all over. They found nothing, which pretty much ruled out skin cancer, or that’s how they interpreted it anyway. I was left not knowing what to think.

Ana arrived later in the morning and spent the day killing time with me: we talked, played trivia, talked, went to the bathroom sometimes, using the bed urinal, since the nurses wouldn’t let me stand up yet. And we talked some more. At one point Dr. Fatehi, the surgeon, wandered in.

“Elias?” he asked.

“Yes,” said Ana and I at the same time.

“I’m Dr. Fatehi, your neurosurgeon. I was hoping to chat with you for a few minutes about what we found.”

“Fantastic,” I said. “That would be great. We have questions.”

At the end of this chat, this is what we understood: The surgery went long because he decided at the last minute that he could do me one better than extracting a bit of fluid from one of my tumours. He saw a large tumour, about the size of a golf ball, positioned right at the back, to the right of the brain stem, that he thought could be safely removed entirely. This way, the pressure in my head would ease up a bit, there would be one less tumour threatening the brain stem, and we would still get what we needed for the biopsy. Another benefit of this removal was that I no longer got headaches when I lay on my back, something I had been experiencing since the summer of 2022. This was a really amazing feeling and was the ultimate burst of emotion that ended my depression.

He then went on to explain that I in fact did not have neurofibromatosis, but that it was not skin cancer either, or at least it does not look that way at this point. The pathologist was still working, and this is a very difficult case for them. It could take about eight business days for their report to come in. And today was December 20, so there would be a lot of holidays coming up. I might not get home for Christmas. They want to keep me here to be able to run further tests and do some MRIs.

Dr. Fatehi then went out, promising to get in touch with us as soon as he heard from the pathologist. That was good enough for us and we thanked him profusely for going above and beyond the call of duty in my surgery.

By this point I was really starting to get my strength back, buoyed by the lightness of one less tumour in my head, and pleasantly surprised at how non-invasive it ended up being, penetrating my skull. Another thing that gave me a huge boost was text messages I was receiving from two of my good friends, Nick and Kevin. They were both saying the same thing, just adamantly insisting that we go out for lunch whenever I get out. Their persistence was heart warming and made me really excited to go home. Lunch would be at my favorite spot, De Dutch, which serves gluten free and dairy free crepes. It was just so nice to know that was waiting for me after eating chicken and rice every night in the hospital.

On December 21, we got a surprise notice saying I can go home. All the tests and MRIs would wait until after Christmas, as nothing could be done in the next few days anyway. I stood up out of that bed the happiest post-surgical patient that hospital had ever seen. I was ready to celebrate my victory with food, friends, and Ana, and it was truly a great  tine. We attracted a lot of attention  with our loud voices, laughter, good natured profanity, and my partially shaved head with this long scar made out of twenty-something staples. It felt like the whole restaurant was sitting at our table, enjoying the moment with us.

And then I had my spinal surgery on January 9, and that put me into quite the funk for quite a while.

A TALE OF TWO SURGERIES

…THE SECOND ONE

I never ended up hearing back from Dr. Fatehi about the Pathologist’s report on the black golf ball of a tumour that was removed from the back of my head. Instead, I received a letter in the mail on December 29 from BC Cancer, telling me in just one sentence that I had an appointment scheduled for January 24, 2024 with an oncologist at BC Cancer to discuss the beginning of my systemic treatment. And that was it.

“Kinda seems like You have cancer,” Ana said after she read me the letter. We were sitting at the kitchen table. “I don’t know why they don’t just say it though.”

“Well,” I said. “If it’s that Avastin treatment for NF2 it would still be done at BC Cancer, and an oncologist would be involved, so in that case it wouldn’t be cancer.”

“Yeah, but we know for sure that you don’t have NF2. I mean, I know we thought we knew for sure that you did have it, but now we have biopsy data. Before we only had MRI data,” she explained. “It’s cancer.”

“I’m sure it is too,” I said. “I mean, a benign tumour is a non-cancerous tumour because it doesn’t grow, right? So, a tumour that grows has got to be a cancerous one, no? Or is it defined by whether it spreads? But I got a whole bunch of them. Oh, why don’t they just explain? That’s the whole point of a letter.”

And so this was the state of uncertainty we lived in for the next month. I was not complaining. I had the time to think about what cancer would mean, about things like chemotherapy, going bald, coughing blood, losing weight, and dying soon.

“I always thought the worst thing about NF2 was that it didn’t kill you,” I said. “Huh. The idea of death changes pretty damn quick once it becomes even slightly real.”

But regardless, this letter did not affect my happiness during this period. I remained agnostic about the future and just focused on being happy in the present. And besides, before I could worry about something new like cancer, I had something else to worry about that was  coming up in the very near future.

I was told to arrive at Vancouver General Hospital at 5:00am on the day of my surgery. I was also told to shower the night before and the morning of using this special anti-microbial soap. And then once we got there, the first thing they did was wash me again. They covered me with this soap without washing it off, and then wrapped one in a hospital gown made of plastic, making me incredibly itchy. After that I sat in a bed in a surgery prep room answering questions and getting all sorts of markings drawn on me and stickers stuck on me. And then they got me into the operating room and under the anesthesia quickly. I was pleasantly surprised that this time they could hook up that wrist injection after I was under, so I didn’t need to feel that pain. They even did my lung X-ray once I was under, which is nice. As soon as I get in the operating room, I am anxious to go to sleep right away. The sensation for me is always that I wake up the minute I go to sleep.

While I was having surgery, estimated to take about five or six hours, Ana left and hung out around the city. She would be back when it was over to hang out with me, my ever-faithful companion. In the meantime, I will try to the best of my ability to describe to you the details of the surgery.

The objective is to remove a specific tumour from my spinal cord. There are about seven tumours of interest in there, just excluding the micro ones, but only one presents any real threat for the time being. And they all seem to be slow growing. But this one, located somewhere between the vertebrates C-3 and C-6, is big enough to threaten limb movement and serious pain. In the months leading up to this point, I had been taking an increasing amount of Tylenol 1s and Tylenol 3s, which contain codeine. And in the few days right before surgery the pain had become excruciating, I started taking Trimodal, which makes me throw up all day but is the only drug I had that could take care of that kind of pain. This tumor, like the others in the spine, presses right up against the spinal cord itself, which is encased in a bone tubing that only provides about one centimeter of wiggle room. So it had reached its maximum allowable growth. “The cup is full,” my surgeon would say. When I asked him what the tumour’s material was made of, what it felt like, whether it was hard like a nut or soft like a sponge, he told me it had the consistency of a gummy bear. There was some give, and it could be squished to a point, but there was a limit.

So, what the surgeon had to do was, first remove those three vertebrates so he could access the area, and then cut the muscle away so he could get in there, and then scrape this tumour off of the spinal cord without touching the spinal cord at all. Inevitably, there would be a little tumour left behind, but that is no big deal. I could become paralyzed forever if he hit the spinal cord in the wrong way.

After surgery I was in a vulnerable state and got to the spinal ICU area to meet Ana feeling much weaker than last time.

I had assumed that spinal surgery would be a lot less invasive than brain surgery, but it turns out the recovery could be just as Long and invasive. Anyways, at the ICU, meeting Ana again for the first time since surgery, she was happy to see me, and had some news. She had talked to the spinal surgeon, and he had revealed that he knew perfectly well that I had cancer, and that all of the tumours in my spine were part of it, and they were also black. For some reason this didn’t really affect my understanding of my condition. I guess I was just still so happy not having reached a conclusion on that front. Ana is very logical and rational, and just wants to get to the truth no matter what it is. Normally I am the same way, it’s just that, well, give me a break on this one.

Around this point my nurse approached and introduced herself. Like just about every single nurse at VGH, she was absolutely a pleasure to have around; highly professional and kind.

“The first thing we have to do this evening is a neurological test, if you are feeling ok,” she said.

“Of course,” I said. “Let’s do it.”

Neurological tests are incredibly dull, and I had done so many of them over the last year, I could do it myself. They touch you here, do you feel this tickle you there, you feel that? But this one was after an invasive intrusion into the spine, so it needed to be more thorough.

“Ok, I’m going to either prick you with a pin, or touch you with the dull side, and you need to tell me which side I touched you with, sound good?” said the nurse.

“Yes, I guess,” I replied, not too eager about the pin pricking. It didn’t end up hurting at all, but it did go on for a while.

She went on with a few more tests, which also took a while, until I asked about dinner.

“Oh, you’ve missed dinner,” she said. “It came around while you were still in the recovery room.”

“At like five o’clock?” I replied astonished. “What is with this hospital and its laissez faire attitude about people missing dinner? I think in prison it’s considered cruel and unusual treatment to deny an inmate dinner.”

“Calm down Eli, I can go pick you up some takeout if you want dinner,” said Ana.

“Want dinner? Why wouldn’t I want dinner? I mean, thank you, but I think we should assume it is a universal truth that everyone wants dinner every day, no?” They did not engage with my rage.

“Yes, I think that is a good idea,” said the nurse. “If you go get some take out now, you can get back in before visiting hours are over. And once you get back in, I won’t make you leave right at 9:00pm. As long as you’re quiet you can pretty much hangout here as long as you want.”

“Ok great, thank you,” said Ana. “What do you want? There’s a Boston Pizza around here, that ok?”

“Yeah that should be fine. I just need something easy to eat, I can’t really move my neck or shoulders, or lean forward at all,” I said.

“You better hurry,” said the nurse,” and we have to finish up the neurological tests.

“Ok that’s fine,” I said. “Let’s just figure out what to get from Boston Pizza.”

“She already left,” said the nurse.

“Without taking my order? Sheesh. Alright,” I said. “Let’s get back to these tests. I’m so good at them.”

“Um, ok,” she said. “For this one I have to check your rectal sensations. So I’m just going to insert a finger into your rectum and then you’re going to tell me if I point it upwards or downwards, ok? And then you’ll just give my finger a hard squeeze so I can confirm you still have good muscle power there, alright? That all make sense?”

“Yeah, I think so,” I said. “I tell you if your finger is pointing up or down, and then I give it a squeeze.”

“Exactly,” she said, pulling on a latex glove. “Are you ready?”

“Yep,” I said, thinking to myself, nice job getting Ana out of here for this.

The next day in the ICU went as expected. I still couldn’t walk but I was content with the pain medication they gave me every four hours, and the meals kept coming regularly, three a day from then on. But by the third day the pain had become a demon, and I was constantly fighting with the nurses for more hydromorphone. By the way, Hydromorphone is just synthetic morphine. It works well for post-surgery because it can be scaled up and down as needed, and doesn’t really cause any side effects, except constipation.

But for those eight days after surgery the pain far exceeded the ability of four milligrams of hydromorphone to keep it in check. One time I asked the nurse if I could have my four milligrams of hydro, as well as a four-milligram injection. The injections work instantly and with more pain killing power, but the pills last far longer—three and a half hours instead of one, in my experience.

“Sure, no problem,” said the nurse. She left and came back in twenty minutes with a little paper ketchup cup with four tiny pills in it.

“Thank you,” I said as I swallowed them. “We’ll do the injection now?” They just add it through the IV; it’s not another injection.

“No,” she said. “We can’t. You are only allowed four milligrams every four hours.”

“But I just asked you and you very clearly said yes,” I responded, getting frustrated and grumpy with the growing pain.

“No, sorry I didn’t mean it like that,” she said pathetically.

“I need the injection. It hurts so bad,” I pleaded. “Come on, you just said.”

“his won’t take long to kick in,” she reasoned. “This is the maximum allowable amount and it—”

“I need the injection now!” I shouted. What had come over me? This was not me, but wow was I mad. It was silent for a few seconds after my outburst.

“Ok,” she said finally. “I’ll get you an injection.”

“Thank you,” was all I said.

When she returned with the injection in hand, we didn’t talk about the dosage. I think I assumed it would not be the full four milligrams, but perhaps I could believe it was. The pain in the neck and shoulders was unbearable, it hurt to think. She added something to my IV and then I felt pain melt away momentarily. Pretty good stuff, and I was able to get to sleep before it wore off.

The next day the pain stepped up another notch, and it became difficult just to lie comfortably in a position. The nurses had to keep coming and helping me shift positions because I did not have the strength to move myself an inch on the bed.

For this hospital stay, we decided Ana would come spend the day with me every other day, as it was a long bus and Skytrain ride home, and she felt it was overstaying her welcome to sleep on her friends’ couch for this long. On one of the days,  she was there with me, my brother Jordan came for a visit too. It was a great visit, although I could barely hear him, he’s such a low talker. But the three of us played trivia and I was able to get comfortable for a while. But then a new wave of pain hit me, and I called the nurse for an injection. It was a male nurse this time. After I got the meds, he helped me reposition to get more comfortable. As he did so, he explained how I was lucky to have a male nurse tonight, since male nurses are actually proven to be more sympathetic, gentle, and caring. I was in the process of agreeing with him, but then I suddenly puked. My dinner included a banana, and that I remember came out last. But the thing is, I had such little strength and energy, I couldn’t expel the puke out of my mouth or even throat for that matter. The banana sat there in the back blocking my breathing, making me scream as I intended to gag and exhale with everything I had. Eventually this thick, huge mass of food toppled out of my mouth and onto my gown and blankets. Despite the recent injection of hydro, this set off a whole new round of pain, particularly in the neck and shoulders again. I don’t have any other memories of screaming and yelling in pain like I did that evening. I remember just shivering there with a numb brain thinking it was over for me for sure this time.

Eventually the physiotherapists started coming by and spending the necessary time with me, getting me back on my feet and learning to walk again. It was a slow-going process, and I only took a few steps around my bed using a walker on the first couple days, but by the end of the fourth day I was walking up and down the stairs using my white cane. I was still very cumbersome on my feet, and every step felt like a risk of a tumble, but I could do it and each day was getting better. Before I knew it, the physio therapist cleared me for discharge, but not before sending off a form to the Red Cross requesting they loan me a walker, a shower stool, and a thing to sit on my toilet seat to heighten it, so I wouldn’t have to bend so far to sit down.

When I got home it took me a few days to adapt back to normal life. Lots of basic tasks were now difficult. Taking on and off my shoes, hanging up my coat, eating anything off a plate, finding anything in the fridge, sitting down and getting up again, showering, brushing my teeth, or really anything that required the slightest bending of the neck or spine. Since my depression ended with the brain surgery, I had made a point to brush my teeth twice every day, no matter what. But after one excruciating experience of that post spine surgery, that plan slid away from me, actually for a lot longer than I care to admit. Although I did not fall back into a depression, I lost a significant spark in my step. I did not automatically wake up happy like I did between the surgeries, or like I do now.

Although the bulk of the post-surgical pain was gone by the end of February, the neck pain only really started to fade at the end of April.

SYSTEMIC TREATMENT

January 24, 2024, was just around the corner, which brought with it my appointment with my new oncologist at BC Cancer. In the time spent at home after spinal surgery I had learned a few new things about my condition. Namely, it was definitely cancer, but a type that did not carry a typical set of implications. For instance, it was confined only to the tumours in my brain and spine and had not spread anywhere else. I was not sure exactly what this meant, but I was prepared to think of it as “cancer lite” for the time being. We also found out the name of the specific cancer: Primary Meningeal melanocytosis. Apparently, this is an incredibly rare cancer: only one in ten million people get it. At first this excited me and made me feel like I would receive some extra special care and attract a lot of interest in researchers, and that maybe they’ll preserve my brain when I die. But now I realize that there are tons of really rare cancers, and I don’t think anyone cares.

On the 24th Ana and I arrived at BC Cancer, Surrey, which is connected to Surrey Memorial Hospital. There we met my oncologist, Dr. Suo, an expert in cancer treatment with a sufficiently loud voice.

“Your cancer has presented itself rather frustratingly,” he said as our meeting got under way. “Making you blind and nearly deaf so early on… And unfortunately, I don’t think I can cure this.”

“No,” I said. “I wouldn’t have thought so.” I told myself that I would not ask how long he expected me to live, because I didn’t think doctors were particularly good at making such judgments, and I didn’t want this number to sit in my head the rest of my life.

“Before we get into different treatment options,” he said, “why don’t you tell me what you know about your cancer so I don’t have to waste time telling you stuff you already know?”

“Yeah, for sure, I can speak for a bit on my understanding of things,” I said, and I told him what I knew.

“Ok good,” he said. “You know a lot about what you’re dealing with. Makes it easy for us to begin.

“First of all,” he continued, “I want to say that this treatment plan has been discussed and put together with the help of a panel of specialists, oncologists and neurosurgeons. The first consensus was that we should treat your case like a case of stage four skin cancer because it looks very similar to that. This means we recommend a course of immunotherapy. This is not chemotherapy; it’s newer, more effective, and doesn’t cause as much sickness. Immunotherapy works essentially by teaching your own immune system to identify the tumours and then fight them yourself. These tumours are able to grow in you because they have been able to hide from your immune system and just grow like a regular part of your body. They are a part of you.

“Immunotherapy would be administered here, every three weeks. Each infusion would take about an hour and a half, as two separate drugs are injected into your IV, one at a time, over about thirty minutes each, with time to set up each dose. Now, these drugs carry risks, and Eli, I need to tell you, people have died from these drugs. The risk is about one percent. Now that’s only if they cause your immune system to attack either your brain or your heart. That becomes fatal fairly quickly. The other risks are all manageable, and these are if the drugs cause your immune system to attack other organs. Often this can be managed with prescriptions only, or else sometimes a brief stay in the hospital if it’s something like the stomach or a kidney.”

I needed a brain break. This was becoming a bit too much for me to handle in rapid succession like this. It sounds laughable in hindsight, but I really didn’t like the idea of risking death in trying to treat a death causing disease. At the very least, I wanted to make sure I understood the numbers properly before continuing.

“I stand a one percent chance of dying if I opt for immunotherapy?” I asked.

“Less than one percent of patients have died from immunotherapy treatment,” he clarified. “This happens when their immune systems attack either the brain or the heart.”

I was telling myself not to ask, but now I felt I had no choice. I couldn’t make an informed decision without knowing. “Without the treatment, how long would you say I can expect to live?” I forced out. And then I added, for some odd reason, “About a year?”

“Yeah, I would say that’s about accurate,” he said. “Eli, you are very sick. This is a good treatment plan and the risks are reasonable and manageable.”

“I know, I realize that” I said. “I just want to make sure I’ve got all the facts and details correctly understood. I’m sure I’ll do it. I’m not going to send you back to the drawing board… When do you think we should get started?” I asked.

“As absolutely soon as possible,” he replied. “Usually there will be a two or three week waiting period.”

“Ok, well, let’s do it, I guess,” I said half heartedly.

“I’ll get the ball rolling and we’ll be in touch,” said Dr. Suo, enthusiastically. “We have a couple more things to go over though. The first is side effects. I need to know everything. You get an itch or a rash, diarrhea, a headache, fainting, low appetite, whatever it is, I need to hear about it every time. Not saying there will necessarily be tons of them, but I need to be always in the loop. About fifty percent of immunotherapy patients don’t get side effects, by the way.”

“Hmm,” I gruffed. “Alright, that’s no problem,” I said, sitting up straight.

“The other thing is, we’ll give you a couple cancer cards with the names of the immunotherapy drugs on them. You’ll have to show these to any pharmacist, doctor, dentist, or health care professional you see, and make sure they don’t give you anything that can’t be combined with them.”

“How long will I be on immunotherapy?” I asked.

“It depends,” he replied. “As long as possible is the short answer. Some people stay on it for a year or two, while others have to stop after a few months because of the symptoms. It’s different for everyone. Others stay on it for five years or longer, until their cancer goes into remission. It’s all about how your immune system interacts with the drugs.”

“Well let’s see how I do, I suppose,” I said. I was nervous. I felt like I was signing up to trade the last year of my life away, which would otherwise be spent feeling fairly decent, for maybe two years of feeling horrible. But who can actually choose a shorter, happier life over a longer, more miserable one? It takes tremendous courage and premeditation.

“So I will be seeing you every three weeks from now on,” Dr. Suo continued, “on the days before your infusions. And on the days before you see me you’ll get a blood test so  I can ensure you are still healthy enough to continue with the infusions. Sound good?”

“Yeah, for sure,” I replied. “Thank you.”

“Ok, we’ll be in touch. Great to meet you, take care now,” he said as he rose to leave.  

“Thank you, good-bye,” said Ana. She hadn’t really been silent the whole meeting, I just can’t remember anything specific she said during this one.

The next day I got a phone call from BC Cancer saying they had good news: they had a cancellation; a slot for my immunotherapy sessions to begin could open as soon as tomorrow, the 26th. To me that sounded like someone else’s death being presented as good news to me, but I have never been the type to mourn the nameless or the faceless, so I didn’t exactly bring myself to care. And actually, I didn’t see this as good news; the thing I was nervous about was now brought within one day of me rather than two or three weeks. But I accepted the schedule change and said I’d see them tomorrow all the same.

When we showed up the next day I was pleasantly surprised at how well I was treated. I was led to the room where the chemo and immuno patients received their infusions by a very kind nurse, who spoke loudly to me and asked me pleasant questions not about my health. The chairs in this room were plump and luxurious, and reclined all the way to 180 degrees, and I was offered a pillow, blanket, and juice. Ana was there with me and as ever proved to be a most dependable conversation partner whenever I was stuck in a chair connected by an IV.

Once the drugs started flowing my mind seemed to soften up on the whole immunotherapy idea. One percent chance of death didn’t seem like much anymore, especially now that I understood that the whole point of these drugs was to get the tumours to stop growing and possibly even start to shrink. I realized that it was necessary to take a risk to achieve this, and this was the only way. What kind of fool would turn this down?

When I was done, we received all this paperwork; phone numbers with contacts we could call with questions, a 24/7 oncologist on call phone line, a pamphlet explaining all the side effects and symptoms of immunotherapy and how to identify and deal with them, how to reach Dr. Suo and his secretary, and a blood test requisition for my next appointment. We left feeling confident in this treatment, thinking, what a good time to be alive.

  A week later I developed the beginnings of an itchy rash on my back, which quickly spread to my sides, shoulders, chest, stomach, arms, neck, thighs, calves, and eventually my whole body excluding my head, hands, and the bottoms of my feet.  The itchiness was insane, and for some reason I was not proactive about it. I received a phone call from Dr. Suo’s office asking me if I had had any symptoms yet, and I explained the rash. This was on the first day it appeared though, before it was very bad. The nurse recommended Benadryl and then to call back later that day if it didn’t go away. So that’s what I did, and it didn’t go away. But it was Friday and nearly 4:00pm by the time I called—nobody answered. So instead I called the oncologist on call, and was given the advice to buy Aveeno moisturizer, because of the oatmeal in it. I spent the weekend putting Aveeno on myself and eating Benadryl, to absolutely no avail. It soon became pure torture, and all I could do was give in to the itch. I looked like a roasted duck that had been tossed on the barbecue, my skin getting tough and sharp where it started to crack apart. Sleeping was a nightmare.

Finally, the next week—I know it wasn’t Monday and I have no idea why not—I called Dr. Suo and got from him a prescription for a steroidal cream which worked much better than the Aveeno. Apparently that rash is the most common side effect of immunotherapy, and it is common to come back throughout one’s time on the drugs. This put a huge damper on my optimism about the treatment.

At our next appointment there was not much to discuss, and I was cleared for another round of the drugs, so the next day I was back at BC Cancer getting another infusion. The spark was no longer there though. I was tired, groggy, and feeling depleted. Mild stomach aches bothered me and kept me worrying about stomach or gastrointestinal issues, my least favourite type of ailment.

The three weeks after the second infusion were rough. I was so tired, literally all I did was sleep. I would get up in the morning, eat breakfast holding my head up with my hand, neck still in pain from the spinal surgery, and then sleep on the couch with my pillow and blanket. Then get up for some cold lunch, if I felt like it, and then go back to sleep on the couch, then wake up for dinner, where again I would struggle to get the food down and keep my head up and eyes open. Then I’d pass out on the couch again because I would be too tired to make it upstairs to bed. But around midnight I would feel compelled to make it to bed, where I would then lie wide awake until morning. This went on for at least four or five weeks, starting maybe a week after my second infusion and continuing into my third. And the rash crept back, but with the steroidal cream it never got too itchy again but was there all over my skin for the better part of a month and a half.

At the appointment before my third infusion Dr. Suo said my liver enzymes were starting to die. He said it was not fatal at this point, so we could do another infusion and look at the problem after, so that’s what we did. But that ended up being my last infusion, on March 8, 2024. After that he said I would have to take a pause to let the liver heal, along with the help of Prednisone, a steroid. He put one on a twenty-day course that started with 50 milligrams, and then tapered down every five days to 25, 15, and then 5. Steroids are sort of a miracle drug for immunotherapy, because they stop an immune system’s self-attack dead in its tracks. Essentially, when your immune system attacks one of your organs, it causes it to swell, and steroids are a powerful anti-inflammatory.

The plan was to just miss one infusion and get back to it as soon as possible. But before my next appointment I started having a worrying shortness of breath. Again, I was not proactive about it, and I just allowed myself to cough shallow coughs, and take slow breaths. I just made myself move around slowly instead of calling Dr. Suo and informing him of the shortness of breath, I don’t really know why, but it wasn’t that painful or scary, until it was. One day at the end of March I picked up the phone and called him instantly when it hit me. I had walked up the stairs and the effort left me wheezing and fighting for air for over ten minutes at the top. I felt really stupid for leaving it this long.

I only got through to the nurse in charge of symptom reporting, but she got through to Dr. Suo very quickly and told me he said to go to the Emergency Room right away. So that’s what we did.

Everything went pretty calmly in the ER. It took a couple hours to get in and see a doctor, but once I did I was able to get a CT scan of my chest pretty quickly. This scan clearly showed the openings of my lungs extremely swollen, hardly letting in air. The ER doctor said this seems clearly to be the cause of an immune system attack and would be brought down by steroids tomorrow when your oncologist prescribes them.  

The next day Dr. Suo faxed my new steroid prescription to the pharmacy and Ana walked up to the shopping center to pick it up. This time he started the dosage at 100 milligrams, tapering it down to 5 over the course of six weeks. “The pharmacist said he had never seen a dosage of Prednisone this high before,” Ana told me when she returned with my pills.

“Really?” I raised my eyebrows, still in bed. “Crazy. must have been a bad attack on the lungs. Can’t believe I didn’t get the sense of urgency until the last minute.”

“Yeah, you got to be more careful. You got to say something way earlier next time. All those times the nurses asked you if you have chest pains or trouble breathing. Why did you always say no?”

“I always figured they were talking about COVID.” I answered pathetically. “I don’t know. It was very stupid of me. And now I don’t think I’ll go downstairs for a few days, or until these steroids start working. I am way too scared to go through all that coughing and wheezing again.”

And so my dearest Ana brought me all my meals upstairs for the next two days.

The steroids were able to bring down the swelling in my lungs very quickly, and I started feeling better that day in fact. I still waited two days before venturing down the stairs though, still fearing the struggle for air. But otherwise, this incident marked the beginning of a very good and happy time for me. Because you can’t do immunotherapy while taking high doses of steroids, and I was on a six-week course, I knew I would get a solid break from dealing with those side effects for a while.

But a couple weeks into this little vacation I developed a new, splitting headache in the right temple, which came every morning at the same time. I could easily deal with it with hydromorphone, which I had been carrying by the hundreds in my pocket at all times since January’s spinal surgery. But there was something curious about this headache. It radiated down to my jaw and made both rows of teeth hurt on the right side. Chewing started to hurt too. Ana helped me figure out that this must be a tumour pushing on the right trigeminal nerve, which runs from the brain, between the eye and temple, down to the jaw, branching off into the center of the face in three spots: under the eye, under the nose, and under the lower lip. Within a few days all these areas became numb, only on the right side. My whole forehead, my eye, so that I couldn’t tell if it was open or closed, my lips, the roof of my mouth, my tongue, my cheek, and my chin all became numb. And it stayed this way all the time. Eating became difficult, and my jaw seemed to have moved out of line, so that I still cannot connect my right molars, and the scissor effect of my front teeth is gone so that I can no longer bite my nails.

At my next appointment with Dr. Suo he took this with a great level of concern. “This is evidence of progression, and it seems to be moving quite quickly,” he said. I was nonchalant.

“I can handle this,” I said. This was probably the steroids talking. They have a slight mood boosting effect, and I have found they make me more optimistic and talkative.

“Sure, for now,” Dr. Suo replied. “But progression is what needs to be avoided in order to keep you alive. All we can do is try to prevent tumour growth, because who knows what effects will happen next time?”

“I understand. So what then? Get off the steroids and go back on immunotherapy?”

“No, we can’t do that,” he replied. “The risk is too great for a repeat attack on your lungs, and I don’t think you realize how dangerous that was for you.”

“Hmm. I probably don’t,” I replied.

“I’m going to talk to the radiation oncologist and see what he thinks. It seems to be the last option. But he was against it before. I’ll have a discussion with him and one of us will get back to you either this week or next.”

“Will that delay the possibility of going back on immunotherapy even longer?” asked Ana.

“Probably for a bit,” Dr. Suo answered. “Especially if we use steroids to manage the side effects of radiation. But in the future, if we ever do immuno again, it’ll be on a half-regime, meaning only one drug per session instead of both, and every four weeks instead of three. And the risk of a repeat lung attack will always be there.”

We left that meeting with a lot to think and talk about. I always like that kind of meeting. I think we were both well past the point of fearing any news from the doctor, and we both were sort of following my path perhaps as you are now, as a TV show or a blog series for entertainment. We loved learning about new brain details and cancer treatments and whatnot; previously I had known almost nothing about cancer. This has been an effective coping mechanism for us; looking at our situation from a bird’s eye view, as if we are just characters in a story, and simply following the plot with intense curiosity. That, And the fact that I don’t really mind the idea of being dead. I wasn’t complaining during that long boring period before I was born—I don’t see myself complaining once I return.

Anyway, I got a call from the radiation oncologist’s secretary a couple days later asking me to come in for a consultation meeting. This she could schedule within a day or two. I booked the consultation, and then the next day I got another call asking to book the radiation sessions.

“I haven’t even had the consultation yet,” I said, flabbergasted.

“Yes, I know, we usually try to book the first sessions so that all you have to do is give us a yes after your consultation and then everything is ready to go.” She wanted to book the first session for that Friday, but I pushed for Monday. I was going to host a brunch on Sunday, and I didn’t want any radiation side effects messing with my plans. I was on a health vacation, remember?

The consultation with the radiation oncologist was long—two hours. It didn’t exactly sit well with me, but I knew I just had to accept it and live with the outcome.

Essentially the consultation was to go over the expectations, benefits, and risks of radiation. I was told that there would be five sessions total, one per day from Monday to Friday, and that each session would be only five to ten minutes long. I would lie on a table similar to a CT scan machine, and the radiation would be sent into my head, and that would be completely painless. “It’ll feel like an X-ray.” I should report any side effects right away, but usually these would not appear during the five days but would start about one or two weeks after.

The benefits were the possibility of stopping tumour growth, or at least slowing it down. The best case scenario would be for it to simply kill the tumours dead where they stood. However, this outcome would likely not become evident for a matter of months.

“I have had a conference with several other radiation oncologists, as well as your other doctors,” said the radiation specialist. “We have decided that in your case it is best not to target specific tumours but to instead target the whole brain, since there are not any pockets of tumours that are safe to ignore. At first we looked at your case with attention on the new, fast growing area by your right temple, but that is only one of several problem areas.”

“Ok, I see,” I said skeptically. Then we got into the risks.

“Most of the risks are mild, and they tend to involve amplifying the symptoms you are already experiencing,” began the doctor. “For instance, if you are having headaches, each session of radiation will likely increase the headache, in the short term. If you are having seizures, you will likely have more. Other common side effects that many people experience are tiredness, which increases with each session, as well as dry skin. But these will likely subside within about two to four weeks.”

He went on to explain other, less common side effects, like skin discolouration around the head or face, patches of hair loss here and there, and the possibility of brain swelling, which he assured me could be easily managed with steroids. He was happy to hear that I was already in the middle of a course of steroids, which would likely help prevent me from feeling side effects for the most part.  He explained that a swelling brain could produce seizures, and that it sounded scarier than it was, and again he reiterated the incredible power of steroids. “It really is a wonder drug,” he said.

Finally, it was time to talk about the worst side effect: the 40 to 50 percent chance of developing short-term memory loss six to eight months following radiation therapy, according to the statistics. This risk I could not easily stomach and took some convincing. Throughout my whole experience with this sickness, although the center of the illness was in the brain, I had experienced virtually no brain malfunction, no cognitive impairment, memory loss, confusion, brain fog, or delirium, I mean. I felt really proud and lucky about that and did not want it to change. That might be an obstacle in my quest to live as long as possible. Do I still want to stick around if my brain deteriorates? I mean, I don’t think I would choose assisted suicide, but I wouldn’t choose my cognitive function for more days on Earth, that is for sure. O Of course, I realized that short-term memory loss is not life without cognitive function. But is it a slippery slope? My other consideration is that I am blind; I can’t refer to notes and lists. I need to be able to hold stuff in my mind. I am a writer. One of the only things I do when alone for entertainment or fulfillment is to be at the computer writing or working on projects. My mind is all I am, and memory, even short-term, is a huge part of that. I can write with pain a lot easier than without a short-term memory.

“It’ll not be so bad,” the doctor assured me. “You’ll ask things like what’s that guy’s name again? Where did I put the keys? And that’s if you develop this side effect. It’s not a guarantee.”

“I have to look at those odds as a virtual certainty,” I replied, stroking my chin like an intellectual. “If I was a gambler, I would only bet what I could easily afford to lose on those odds. I cannot easily afford to lose my short term memory.”

“You have other tumours threatening both your short- and long-term memory function,” the doctor said. “Not necessarily imminently, but they are in areas where more growth could result in significant memory impairment in the future. If this radiation works, you could potentially save further memory impairment.”

This news made my heart drop like a rock, all the way down to my colon. “Sheesh,” I said. “I didn’t realize that. I keep forgetting the role of time here. I know tumours grow with time, and that time is therefore the killer. Ok, all we can do is try to stop growth, that’s what we’ll do. Without treatment, I’m likely not alive in six to eight months anyway. Ok, hard to let go of life one piece at a time like this. Ok, let’s do it. I’m ready. It’ll be cool. Do you agree Ana? Are you ok with these risks?”

“Yes, of course,” she replied. “I mean, it’s totally your choice, but I agree it is a good choice, there is no good reason not to do it.”

“Thank you honey,” I said with a big, crooked smile, because of the numbness on the right side of my face. “Sign me up Doctor, we’ll be here on Monday.”

And that’s what we did. Five days in a row, from April 29 to May 3 I lied on the radiation table and received my dosage of radiation in solid comfort and confidence. My side effects ended up being extremely minimal, especially during the sessions. Starting the week after I became tired a lot but resisted the urge to nap during the day. My skin became very dry but who cares, just let it exfoliate off yourself and leave little piles of dead skin cells all over the house. My hearing dipped even lower though, and that always sucks.

Two weeks after radiation ended my hair started to fall out. I could just hold a thick strand and pill gently and it would come loose like it wasn’t even connected. To me this was laughable. Being blind is a great liberator of caring what you look like. Within two weeks it was basically all gone. I still have a thin layer of down feathers, some soft bottom hairs that are still long, that just sort of cover slivers of my skull, a bit like Gollum from Lord of the Rings, I would imagine. I really don’t mind it. In my mind I think it looks bad ass, but I’m sure it doesn’t. I asked my friend Alex, who is himself losing his hair, but very slowly, if he thinks I should shave it.

“Would you shave it if you were me?” I asked.

“If I could see,” was his response.

Well, I don’t see. I feel. And it feels soft, and I shampoo and everything.

We are in the present now. That’s where I’ll leave things. Generally speaking, I am very happy. I don’t experience pain these days. That trigeminal nerve pain and all the numbing in the right side of my face has gone away since the radiation. It remains to be seen what that means for my longevity.

The only real health complaint that I deal with is my very low hearing. It is about as low as it can go—about three to five percent remaining in the left ear. Nothing in the right. This impairment leaves me teetering on the edge of the vegetable pale. I don’t even know how to consider living blind and deaf. I have buried those old fears, not dealt with them. I never got around to learning tactile sign language, and don’t worry, I feel stupid for it. But hey, today I feel good. I’ve been feeling this way for about three or four months now. I wake up happy every day. Every day is a gift, I know that, and I appreciate the juice out of it. I take pleasure in sitting at a table talking to someone, their mouth six inches from my ear. I love, cherish, and enjoy the company of my wife Ana more than ever. I like to work on the computer, and these days I feel like I could return to work. Any feeling of normalcy or basic health is pure ecstasy to me.

It is early June 2024.