How I Found out I Have Cancer
And not just any cancer, but grade IV brain cancer with an average life expectancy of 12-18 months
My brain had been giving me subtle nudges for a year or so before my cancer diagnosis. Episodes where I suddenly felt completely off with an acute sense of impending doom (no, it wasn’t while reading the global news), followed by slurring of words and impairment on my right side. You know, the droopy smile and all. All these nudges had resulted in a call for an ambulance, but by the time I had been transported to the ER, the symptoms had passed and I was sent home. In January 2023, the symptoms were witnessed also by paramedics instead of the usual first-on-scene crew of firefighter EMTs, so the ER doctor ordered CT imaging to rule out a stroke. The final diagnosis was a transient ischemic attack (also called a mini stroke), as CT showed no evidence of a full blown stroke. (CT is not a modality used to diagnose brain tumors, but MRI machines are scarce in Canada) I was discharged again, but this time with a referral to a neurologist. I met her a month later, and her working hypothesis was that I have some rare mitochondrial disease that causes neurological problems. She would read up on those disorders, she promised. I felt relieved - I felt I can live with a mysterious and intriguing medical whodunit. An MRI was ordered, but with the delays in the Canadian health care system, I assumed my number in the MRI imaging queue will be called post mortem. I wasn’t particularly concerned, my neurologist didn’t seem worried either, and I went on with my life. At the time, my life was that of a middle aged overweight woman, fully buried under an identity crisis as my clumsy approach to motherhood had pulled a suffocating weighted blanket over me. Honestly, I thought this was some psychosomatic manifestation of the lack of direction and stress I was feeling in my life.
But then, my brain, frustrated that it wasn’t heard, delivered a punch. It was a beautiful evening in April of 2023, I had just returned from a long and stressful overseas trip, and was walking home from a short jog (I had been a runner for nearly twenty years at that point). My phone rang, I fished it out of my sweaty pocket, but after the first few sentences my throat seized up, for a brief second I couldn’t breathe, my body wouldn’t respond to my commands, I dropped the phone and it slid away from me on the smooth pavement, and then violent convulsions took over the right side of my body. Everything happened as if in slow motion. The street was quiet, I tried to wave down a couple of women walking on the other side of the street, but I couldn’t make a sound, and eventually I fell onto the ground. My mind was blank and calm the entire time, the only feeling being the acknowledgment that washed over me that my life from now on can be divided into before and after. The convulsions became less frequent, my right hand delivered one last goodbye which seemed like the wave motion crowds do on stadiums except taking all parts of the movement on by itself. And then everything was still and quiet. Eerily quiet in my body. After a couple of minutes, a man ran up to me, said he had seen my seizure from his window, and called an ambulance. Another passerby stopped, repeatedly asked me what happened and whether I’m ok, but I couldn’t talk, and even if I could have, I felt such irresistible peace with my mind floating above the tree lined street in the evening glow of the Spring sun. The peace was eventually lost and my body and mind descended back into the reality - namely onto the pavement that at that point had cooled down significantly. I don’t know about you, but my usual jogging attire for a brief city run isn’t so versatile as to accommodate working up a sweat in the warm sun and simultaneously be supportive of an hour+ day dreaming on the cold pavement in the quickly approaching evening. The firefighter EMTs had arrived, established that I’m still alive and am not displaying any obvious signs of immediate dying, and my low blood oxygen was easily fixed by supplemental oxygen. So there we all waited, me on the pavement, still unable to talk or move my right hand (later to be understood as Todd’s paralysis that can follow after a seizure), and firefighters idling around me, taking vitals every so often. They couldn’t transport me into a hospital, only an ambulance could. Eventually the ambulance did arrive, I was able to already get out a few sentences by that point, the young male paramedics loaded me into their vehicle, and casually informed me during the ride that what I had experienced, was probably just me pushing a bit too hard on my run. Upon arriving in the ER, I heard them repeat the same story to the ER staff. Laughing, albeit discreetly behind the curtain that separated my stretcher from the rest of the room. When the ER doctor finally came to see me, discharge papers already in hand, he asked me to open my mouth for a check - perhaps feeling slightly guilty for not examining me - and found bite marks on my tongue, often a tell tale sign of a seizure. Surprised, the doctor stepped back and opined that perhaps I did have a seizure after all. But alas, the doctor felt that the moment of doctoring had passed, and I was discharged. And I was done being laughed at. It was at that point nearly midnight and I wanted to get back to my young child and go to sleep.
The calm of the immediate post seizure moment didn’t return. I spent the subsequent three weeks in distress, feeling like my brain was “broken” and obsessing about any new odd feeling in my body, fearing it may be the beginning of a new seizure. My MRI had been requested “in the system”, but due to Canadian healthcare crisis, said “system” wasn’t able to reveal any potential date for the imaging. Upon my request, my neurologist sent a referral for a private fully out-of-pocket MRI, which had a much shorter wait. In the mean time, days went by. Days with anxiety and stress, being a full time caregiver to a four year old, pretending for his sake that “maybe it’s not that bad”, although I myself no longer believed it. Another day passed, I started to have trouble with fine motor skills of my right hand - holding the toothbrush felt funny, I stumbled while playing the piano. Another day passed, I looked in the mirror and saw the right side of my mouth drooping down. A sense of impending doom loomed over me, followed me anywhere, like I could explode at any minute and die. I called my neurologist and she prescribed me an anti-anxiety medication. I felt helpless like I’ve rarely felt before. It’s not because no one at that point thought that I could have a brain tumor, and an aggressive and fast growing one at that. It’s that no one thought anything at all.
On a warm late May evening, three weeks weeks after my big seizure, we were at home, packing for a camping trip. But the sun was beckoning outside, so we loaded our four year old into a running stroller and headed out on a run. A run! I had been too scared to go on a run after the seizure, but this time my husband was with me. I was excited. We crossed the first intersection, I grinned at my husband and asked him whether my mouth still drooped. Hearing his no, I sped up, feet finally hitting the paved running path that I had so missed. My excitement didn’t last very long. Barely half a kilometer into the run, I murmured “seizure” to my husband as I felt first my mouth, tongue and then my right side twitching. He called 911. We parked the stroller on the side of the path and I sat down on the grass. The firefighter EMTs showed up within minutes, but couldn’t transport me to the hospital. They called for an ambulance via the radio and afterwards, we all sat or stood around, on the grass or near a stone wall, off the running path, in silence. The minutes went by, and I kept seizing. More and more minutes. Seizures, one stopping, another starting, washing over me like waves. Me now laying down on the grass, firefighter EMTs still around me. Waiting for the ambulance. Barely a kilometer from a hospital that serves zip codes, including my own at that time, of communities in a city where houses cost millions of dollars, but prompt delivery of basic emergency or any medical care of that matter isn’t possible. The EMTs were getting antsy. They suspected a stroke due to my right hand weakness, drooping mouth and slurred speech, and we were nearing the end of the “golden hour”, the first 60 minutes after the onset of the stroke where restoring blood flow and protecting the brain from damage is most likely. You know, the acronym FAST. The ambulance still hadn’t come. All units were busy. Then, like in an exaggerated and cheesy first responder TV drama, one of the firefighters decisively told my husband that we simply can’t wait anymore, and offered to jog to our apartment with my husband and son (still strapped into the stroller, but thankfully too mesmerized to see a firetruck and firefighters up close to notice that something serious was going on). And once home, to jump into our car and drive back to me, meet me on my sunny grass spot, load me into our car, and then my husband was to drive me into the nearest Emergency Room behind the fire truck that was to lead the way. I honestly didn’t care anymore at that point. I was still seizing, I was laying down on the grass, and was pretty much ready to die. A few minutes after the running crew had left, unexpectedly an ambulance showed up. Two very nice and empathetic (female) paramedics took over and transported me to the ER. The seizures still hadn’t stopped. The paramedics stayed with me until I was finally admitted into a room. One of them gently asked if they can let my family know where I am. Through the twitching, I was able to get out the words no, I don’t want my son to see me like that. She squeezed my shoulder and nodded. More seizing, now non-stop. Last thing I remember, was a young dark-haired ER doctor sitting next to my bed, without saying anything, intently leaning towards me, seemingly deep in thought. After that, it all went blank.
I woke up the next morning in a multi-patient room on the neurology floor of the same hospital. The rails of my hospital bed had seizure pads on them. I was in shockingly good spirits. My very low key agenda didn’t include much besides meals and - drum roll - finally an MRI, which would determine the course of action. I was elated to have the MRI done, but not worried about the results. It was Saturday, so whatever the course of action was, it wasn’t going to happen on the weekend. My husband and son came for a visit and brought me books to read, I encouraged them to still go camping for the weekend.
The neurologist whom I had first seen in the outpatient clinic, the one who had hypothesized that I have a mysterious mitochondrial disease, was on call in the hospital, and came to bring me the news from the MRI results. Her face was sorrowful and serious. The MRI had shown a mass in my brain. A tumor. I didn’t say much in response. What was there to say? She left, I started searching the internet (what else was I supposed to do?). A brain surgeon popped by a bit later, showed me images of my now apparently diseased brain looking like a Halloween skull with a lightbulb in it (lit up by the injected contrast agent). He said I needed emergency craniotomy. And he was going to do it, he just needed to borrow some tools. The tumor was in my motor strip, affecting my right side. Hence all the symptoms I had been experiencing, all the seizures. The plan was a craniotomy, drilling into my skull and fiddling with my brain. Apparently it needed to happen as soon as possible. I wasn’t in a position to adequately discuss my options. The surgeon looked like he was barely out of college, and I tried not to think too much about the tool borrowing comment, hoping he wasn’t waiting for a sale at Home Depot. He said he couldn’t tell based on the images alone what kind of a tumor it was, and if he had an inkling, he sure didn’t reveal it. He seemed giddy and excited. We were in a relatively small hospital so it probably wasn’t every day that he could resect brain tumors. He rushed off, it was six in the evening. I had shared this shocking moment with all the other patients and visitors in the room, as the only privacy I had was a thin curtain separating my bed from the next. I laid there, stunned. A quiet elderly lady in the other end of the room was refusing to eat. Her visiting granddaughter encouraged her by somehow weaving the news I had just gotten into her pep talk for her grandmother. I had been drafted into a lifelong service of featuring in the “yes, your situation is bad, but at least not as bad as hers” comments.
And then the waiting began. For the tools, for space in the operating room. I did a lot of internet searching. Was it really such an emergency that I needed to be in the hospital without time to weigh my options? My neurologist dropped by. By that point, things had started to sink in, I had tears in my eyes. She nodded approvingly. “Now that’s the right reaction”, she said. I was being a good girl. I mean, patient.
The operation was scheduled for Tuesday following the Saturday MRI. The night before I was pumped full of anti-seizure medications, and felt half euphoric, half nervous. When it was time to walk over to the operating table and lay down, I started to cry. The surgeon was standing away from the operating table, with his back towards me, reviewing images. Anesthesiologist, a kind woman, leaned over me and said reassuringly: “I will take very good care of you”. I don’t remember her face, but I remember the feeling she gave me. Of hope and safety in the face of ultimate uncertainty and forced blind trust. Like the exercise when you stand in the middle of the circle and need to fall backwards and wonder if anyone is there to catch me and who they even might be since they all largely stay mum. And then I went to sleep.
After the craniotomy, I woke up groggy, and had a magnificent half moon of staples on my head that was shaved on the left temple. The surgeon was hovering over me and asking me to lift my right arm and move fingers, and smile to see how much of my right side was paralyzed. I did ok. I spent the next couple of days in Neurology ICU, being woken up every four hours for tests. It felt peaceful. I had nothing to do. I peed in a catheter, I was on IV fluids, I couldn’t and didn’t want anything to eat. My husband slept at my bedside, in a chair. A friend kept vigil when my husband stepped out. The anxiety was too overwhelming when I was alone. A couple of days later, I was moved to the “regular” neurology wing, this time mercifully into a private room. My right side of the face was fairly numb and paralyzed due to a severed nerve, which made it difficult to speak and eat. The right side of my mouth still drooped down and made my smile crooked (I was asked to smile a lot). My right hand’s fingers had either sensory issues or couldn’t move properly as their communication with my brain was compromised. I ate liquid and mushy food, practiced sounding out my name and date of birth for the endless parade of nurses and therapists coming in and out, and wrapped my misbehaving fingers around a pencil to make them rehearse writing letters. My friends had brought me fresh blueberries and it took all my courage to try to chew them and swallow after a liquid diet - a task that seemed as Herculean as swallowing a whole orange. My brain was swollen, I couldn’t handle much stimulation, and parallel threads of thought were impossible. Overall numbness of mind made me forget what had been already said. As I got closer to discharge, the number of rehabilitation specialists started to swarm around my room. My husband took endless notes, I needed to demonstrate the ability to make progress on eating, and ability to walk around. I could walk, but my brain would start hurting as in a pressure cooker as soon as the pace conversations got quicker and responses were expected. Once, while two well meaning medical professionals were presenting rehabilitation options and exercises in a rapid fire double monologue, I started crying, covered my ears and yelled that I want everyone out of the room. Looking at me quizzically, the therapists of this or that backed out of the room.
A week after the craniotomy, I left the hospital. I had barely seen my son for 10 days. I was in the bed in the bedroom when he came home and saw me for the first time since the hospital. We both felt awkward. He peered at me cautiously and suddenly, without any small talk or hello, launched into a pretend game we often played together in the mornings snuggling in bed. And the rip in the tight knit fabric, of our deeply connected lives, the breaking of the colorful threads that had happened so suddenly and violently between us, was instantly mended.
I still didn’t know what kind of cancer I had, as the pathology report had not come back by the time I was discharged from the hospital. I had spent plenty of time looking up all the possible options online, from the most aggressive to the most benign. I went to a walk-in clinic to have my staples removed. A chatty elderly doctor pulled them out, one by one. We were talking and laughing. Then he suggested he’ll go look at my chart to see what the pathology report says. I didn’t want to know. I already had an appointment in a week at a cancer clinic that would deliver the news along with a plan. There was nothing to do until then. I had a visiting out-of-town friend waiting for me at home. “But it will only take a second”, he insisted, and rushed out. I didn’t stop him. Only it didn’t take a second. When minute after minute went by and he still wasn’t back, that’s when I knew what kind of brain cancer I had. The current me would have left, pretended I still didn’t officially know as the words hadn’t been spoken, hadn’t been uttered into the universe and fully brought to life. I would have gifted myself a carefree weekend with my visiting friend and another week of enjoying the early summer with my family. I would have gathered my things, walked out the door and headed to the exit at the end of the floor. I knew where it was. But the old me waited. So new to the medical world, I waited. I was a good girl. When the doctor finally slowly walked in to the room, his gaze firmly on the floor, his shoulders slumped, he told me what his long absence had already made clear: I had glioblastoma. “Do you have any questions for me?” he finally lifted his gaze and looked at me, stunned, confused and sad. “Nope”, I smiled my crooked smile, and did my best to walk out as nonchalantly, unhurriedly and inscrutably as I could.