My Journey with Cancer

Summer 2016 was a highlight and a milestone for me in many ways. I had just finished 5 years of University, visited many family friends across Canada on a long road trip, and capped it off with a trip to California and Mexico to visit my aunts, grandmother, and cousins. This was my travel and relaxation before the next stage in my life, which would be to work a few years and eventually begin Grad School. Things were looking very promising and I felt like nothing could get in my way.

August 2016: I was visiting Mexico during the end of July and the majority of August. The plan was to return to Canada for September in search of a full-time job in my field. I was driving around Mexico at this time in my Tía Luisa's van, when I noticed the car in front of me would vertically split in two. This was subtle and quick, going back to normal in seconds. Later that week, I was sitting in my aunt's office and observed the vase in the corner splitting, this time splitting further. I remember the phone call that followed, calling my best friend Aya and describing what I was seeing. I was due home in a week and would see an optometrist the day following my arrival. 

September to November 2016: Although my vision would split from time to time, I did not let that slow my life down. I caught up with friends, and began searching for jobs. At the same time, I saw an optometrist who could not figure out what could be wrong and referred me to an opthalmologist for December. I saw walk-in doctors asking about the same thing. The double vision was becoming more frequent and longer, making it difficult to read or work with a computer. Before long I began to work as a Jr Data Scientist beginning in early October. I remember within 2 weeks of that job, I began to wear an eyepatch to work as this was the only way to deal with my double vision. All I could do was wait to see the opthalmologist and hope they had a solution. At this point in my life, I had just turned 23 and there was no illness or health problem a pill or a little exercises, and lots of sleep couldn't solve.

November 4th, 2016: Friday afternoon at 4:30 pm, my two colleagues and I are in our "Data Incubator", a small room with a large table and white-board walls around every edge. I wanted to write a note at the top of the wall, so I took a chair and stood on it for height. What followed was the catalyst for my journey. As I was standing on the chair, I passed out, fell backwards, and landed hard on my head. I was only out for a few seconds, before I opened my eyes, sat up, and muttered to my colleagues, "Are you two okay?". I only received stares of shock in return. Other managers from neighbouring offices came to check on me after hearing the loud bang of my fall. Being as stubborn as I am, I would have gone home and slept it off, but I decided to call my best friend who insisted I go to the hospital. I left work immediately, and went straight to Royal Columbian Hospital in Burnaby.

I had been at the hospital for about 4 hours now, and was starting to lose patience. I had done a CT scan and was awaiting the results when a nurse came and asked if there was anybody they could call to come in such as family or friends. I told her that we could call my father but I don't see a need. I asked why. "We found something on your CT scan and we think it's best if you have someone here", she said. I had no idea what that could be, but there was no point in worrying about it. They called my father who happened to be heading to a night shift at work, and redirected himself to the hospital.

With my father at my side, the doctor came in with a sketchpad in hand, and explained what they found. What we said, I don't remember, but his sketch stays with me. It was a larger circle - being my brain - with a smaller circle in the center. This was a brain tumour. He said I would be seeing the neurosurgeon in the morning, and to take care. I squeezed my father's hand and stayed silent. Were there even any words that could describe what I was feeling at that moment? If anything, I felt hollow. Hollow as if I was suppressing every emotion to the point I felt none. Then the emotions start to push their way through, one by one. As my dad attempts to console me, to say that no matter what we will get through this, I recall the first emotion hitting. "What are the chances I get a brain tumour. What are the chances this happens to me?" It was hysteria. I begin to laugh and repeat to my father, "what are the chances?". Very quickly that hysteria became uncertainty. What will come next? What about work? What about my driving? This was me worrying about everything other than what was important, almost trying to distract myself from the bigger things.

Finally, the sorrow set in. I squeezed my father's hand and began to  weep. I said nothing; I just cried. The worry had left my mind, and all I wanted was to sleep and wake up from this nightmare. There was never any doubt in my mind though that this was real. Throughout my life, I always had a "What's next?" attitude to bad situations, of how to get out of them. Baby steps. This was no different for me. As my crying got quieter and eventually stopped, I thanked my dad and told him I loved him. All that was on my mind was seeing the neurosurgeon in the morning. Baby steps, one thing at a time. 

November 5th - 14th, 2018: I had a friend sleep over that night and take me to the hospital in the morning to see Dr. Andrew Lee who would become my main neurosurgeon and neurologist for the coming years. He brought me into his office and showed me the CT scan, where the tumour was and what the next few steps would be. We planned for an MRI on Monday the 7th before we could plan further.

Monday's MRI came, and at this point I was chipper. I was just happy that things were getting done and moving forward. I met with Dr. Lee a couple days later in his office to discuss.

He explained the tumour in detail using the MRI images and a model to describe it's location, size and effects. It was approximately the size of a golfball, and was located on my pineal glad - at the top of my brain stem. The tumour's location and size was causing hydrocephalus - an increase of fluid in the brain. With nowhere to drain, the brain fluid had been building and was causing a constant dizzying feeling to which I had apparently become accustomed without notice. This was the reason for my collapse days prior. Our first step, he said, was to take care of the hydrocephalus and get your brain back in a proper fluid balance to reduce dizzying and faint feelings. We planned for to install a ventriculoperitoneal (VP) shunt, a thin tube through which would flow brain fluid from my brain, through my neck, and into my abdomen for absorption.

November 15th, 2016: My first of a series of planned and unplanned surgeries related to my tumour, this was the instillation of my VP shunt. They made a half-moon incision in the upper-right of the back of my head, a small incision on the right side of my neck, and a 1.5" incision in my abdomen (an incision which would prove to cause many problems). The surgery last about an hour, and I was home the next day. Up to now, I still kept my joy and was eager to find out the next step.

November 16th - 24th, 2016: If you were to ask anyone who knows me well to describe me in one word, they would likely say "stubborn". Some would even say I'm "too stubborn to die". To illustrate that point, I was working from my couch on two days following my surgery, and was back in the office the next day. I absolutely refused to let any surgery slow my life down. My head was shaved, staples in my scalp, clear bandages covering the mound, gauze on my neck, bandages on my abdomen, and yet I was at work. I really shouldn't have been, but this case wasn't at all an outlier in the years to come. 

I got a call over the weekend from Dr. Lee who told me that they were unable to find any tumour cells in the brain fluid extracted during the surgery, and that a brain biopsy would be necessary. He gave me the option of the 22nd or the 29th. I saw no reason to delay the biopsy, and chose to do it a single week after my VP shunt surgery.

One minor problem that arose was that m tongue was still frozen after surgery. Normally, this should be gone minutes if not hours after surgery, yet my tongue would not unfreeze.

November 21st, 2016: The night before my brain biopsy was the first time I felt dread and felt fear. I was up all night, worrying about the biopsy given the location of the tumour and the described procedure. What would happen to me? Will I retain my memory? Will I retain my cognitive abilities? What about my motor skills? Everything that defines a person's personality and characteristics is in the brain. You could say that a person is defined by their brain. Who am I if I come out a different person, different character? I had 100 questions and could only wait and see.

November 22nd, 2016: Since the tumour was located at the pineal gland above the brain stem, the only way to reach it was through the two halves of the occipital lobe. My doctor's stellar reputation did help in putting me at ease, and in we went. 

The surgery took 5 hours and caused an intense amount of swelling. The tumour had two blood vessels sitting on top of it, meaning that bleeding was a risk. The goal was to extract as much of the tumour as safely possible. Dr. Lee was able to extract about 50% of the tumour in all. For me, that meant I was half-way out of the problem at hand. What I didn't know or anticipate were all the problems that would follow.

After the surgery, while I was in the recovery room, I was thinking a lot. After having just finished brain surgery, my number one concern was whether I was still the same person and whether I could still think. I was going to Math proofs, and reciting sorting algorithms in my head. After just finishing my Bachelors, it would be a pity if I forgot all my schooling over this surgery. My mind checked out and I let myself relax.

I arrived in my hospital room and was greeted by my father and two brothers. I don't remember what we spoke about, but it wasn't about my surgery. Any questions from my father about my health were about whether I was hungry or thirsty, or whether they could do anything to make me more comfortable in my bed. Being in the hospital, especially for a surgery can be a scary thing, but my family was great at making me feel at ease.

That evening, Dr. Lee came to me to give me a summary of how the surgery went. He told me how much they were able to extract, as well as the complications involved. He explained to me that my brain was swelling a great deal, and so they could not replace the piece of bone they extracted. I would be taking dexamethasone (a brain steroid) for the next month to control the swelling, and I would get my bone back once the time is right.

November 22nd-November 25th: Minutes after my surgery was when I noticed the first thing that wasn't normal - my vision. I had double vision, or dyplopia, and it seemed to change as I moved my eyes. Prior to my brain surgery, I was seeing signs of vertical strabismus that would come and go. After my surgery, that vertical strabismus had become more significant and stabilized.  On top of the vertical strabismus, I had horizontal strabismus (a horizontal shift), as well as torsion - all in the left eye. This made seeing with both eyes quite dizzying and I wore an eyepatch for the remainder of my hospital stay.

The day after my surgery was the first day I was allowed to get up, although I was surprised when a physiotherapy nurse came to see me. At no point did I consider the physical toll that brain surgery could have on my body; I was only concerned with my mind. Of course, the brain controls all aspects of your being, and it wasn't long before I found out I could not stand unassisted. 

Days in the hospital seemed to last a lifetime, and I spent the majority of that time sitting on the edge of the bed. I am stubborn, more than I should be, and although I couldn't walk, I refused to lay in bed all day. The nurse got me a cane, and I would try to walk around the Neuro Floor, hovering my cane above the floor and dropping it only when I felt unstable. I was committed to walk again.

Each day, I noticed more things that were out of the ordinary. First was my trouble with reading. I couldn't yet figure out why I had trouble reading, just that I did. The hospital signs were hard to read, so I asked my older brother to bring me his secondary pair of glasses (he has a higher prescription). I hoped that they would help but they didn't. Things were more magnified but letters were still hard to make out. He got me a novel from the downstairs shop, and I did my best to get through it. I still had Grad School in mind, and couldn't afford to lose my sight. It wasn't until later I found out why I was experiencing this problem.

The next thing was my hearing. At the time, I had developed hyperacusis, or an extreme sensitivity to certain frequencies. This wouldn't be a problem until I got home, but I did notice it was uncomfortable whenever the bell or an alert would sound on the PA. 

The last thing was my right-hand motor skills. Although my left was okay, my right was shaky and unstable. Things like drinking from a waterbottle became difficult, as the bottle would violently shake as I tried to tip the water into my mouth. My hand was also quite slow. I could write at half the speed as before and that loss in speed translated to my typing. For a while, my writing would also be very sloppy due to my shakiness, and my writing resembled that of a 7-year old and took just as long.

November 26th: A friend of mine visited me in the hospital and brought me his favourite dish of seafood noodles from his favourite chines restaurant. I was sitting with him in my room, fighting with my fork when my neurosurgeon came in with a concerned look on his face. I asked my friend to exit the room while I spoke to Dr. Lee.

"I received the lab reports for the piece of tumour we sent them. The unfortunate thing is it came back as a pineal germinoma, which is cancer. From here, you'll be dealing with the BC Cancer Agency. They'll call you in a few days and you'll proceed with them. They know how to kill these types of tumours without surgery, so the good news is that you won't have to worry about any more surgeries for a while. Do you have any questions?"

I had a million questions but - unsurprisingly - I only asked about how long before I could get back to work. I wanted to get back to my life as soon as possible.

My friend came back in, and I told him the news. I didn't dwell on it. I casually said "It's cancer", and tried to change the conversation. It would take a long while before I took my predicament seriously. Especially at that moment though, I didn't want to talk about it and justifiably so. 

November 27th: It was finally time to go home. My nurse cleaned my wounds, unveiling my ghoulish surgery wounds, and applied new dressings with extras for later. My dad came to pick me up and took me home, but not before getting me a fast-food chicken burger. When you're eating hospital food for more than 4 days, you get serious cravings!

November 28th - December 8th, 2016: Due to my difficulty walking, I kept the majority of my things downstairs, including my laptop, chargers, headphones, books, and notebooks. 

I wore an eyepatch once I got home, and tried to get used to life without depth-perception. When eating, I would slide my hands along the table until I reached my glass or plate, and asked my family to pass me objects whenever possible. 

The hyperacusis only posed a problem in two circumstances. One was when using the downstairs washroom where the fan would turn on with the lights. As the fan was unbearable to my ear, my only two options were to crawl on all-fours to the upstairs washroom, or to use the downstairs washroom is the dark as there were no windows.

I stretched my legs several times a day and would walk laps in my living room between the two couches so I could have a space to fall if I couldn't make the 5 steps. My cousin would offer me her walker or her old cane, but I refused; I was going to walk again.

I had blank notebooks where I would practice my writing. Like a child in elementary school learning how to write, I started with repeated letters. A typical day would have 5-10 pages double sided of repeated letters, one letter per page, two pages for lowercase and uppercase. The mathematician in me also practiced greek letters in preparation for Grad School.

Everyone copes in different ways, and my dad coped with my cancer by reading into a lot of psuedo health-science. Every day he would be making me some kind of fresh squeezed vegetable or fruit juice, or mixing powdered magnesium into water become they were supposed to help me get better. I'm sure fruit juice and vegetable juice is good for you, and magnesium is good for the bones, but it's not going to cure my cancer. That being said, what else can he do? He cared, and he reminded me daily with his efforts.

I finally got my call from BC Cancer Agency and things were finally getting started. I would first meet with a radio-oncologist, followed by a chemo-oncologist. My dad drove me to Vancouver to the appointments and accompanied me. I didn't want him to leave my side. The first appointment was filled with paperwork, and body measurements. 

The radio-oncology appointment was first. He told me that my tumour could be killed with either chemotherapy and radiotherapy together, or a higher dosage of radiotherapy only. The radiotherapy sessions would be daily, regardless on which I chose. Since it was radiation on the brain, I had a higher chance of developing dementia as I got older, and most side-effects wouldn't present themselves for many years, if at all. He assured me that they can almost always kill these types of tumours; however, if the tumour came back, the second round of radiation would be more intense.

Then came the appointment with the chemo-oncologist. He explained to me that chemotherapy tends to work better on children and radiotherapy worked better on adults. I was an awkward age in between, he said. I was 23, technically an adult, but I had a "pediatric" tumour. For this type of tumour, there was no scientific evidence to suggest one method was better than the other. Given these choices, I told the doctor that I would rather take the higher dosage of radiotherapy only.

December 8th - 9th: My steri-strips that were holding my abdomen wound closed had come undone a few days too early, and the wound began to open. It had sealed along the most inner part of the wound only, and it began to leak what I imagine was brain fluid leaking out my shunt.

I was scheduled to see Dr. Lee at his office in New Westminster when his secretary called to reschedule the appointment because the surgeon was called on emergency. My father was driving me at the time when we received the call, and since we were already in New Westminster, he drove me straight to Royal Columbian Hospital to have my wound looked at.

I was taken into the ER and was asked to stay overnight. My doctor came to see me, sewed my wound up, and said they'd keep an eye on me. I had a CT scan on my abdomen, and I recall my wound leaking while I was in the CT machine. I was told that the shunt was leaking fluid out of my wound, and would be having another surgery in the morning. 

December 10th: I was awoken at 6am and taken down to Surgery Daycare. Although my first two surgeries brought me a feeling of angst, this time I was just thankful I was having another surgery and could not wait for it to be done. 

The surgery was finished, my abdomen was filled with stitches, and my tongue had unfrozen! I was happy, all things considered. I would stay in hospital overnight and have another CT to ensure all went went with the re-adjustment of the shunt in my abdomen.

December 11th, 2016 - January 6th, 2017: I happily went home, still unable to walk mind you, and was eager to continue on my road to recovery.

I spent the my time at my dad's house continuing as I've been doing up to this point - walking between the couches, crawling up the stairs and moving onto two feet with the rails, and pulling myself onto and off the bed to work on my arm strength. 

Throughout my time at home, I had friends come visit me at home and bring food. My dad, caring for my health in his own way, would make me beet, carrot, and apple juice 3 times a week to strengthen my eyes and blood. He would also make me tumeric tea and make me plenty of vegetables. Everyone copes in different ways, and for my dad it was a deep dive into health foods as that was the only way he knew how to help.

This, of course, on top of being an incredibly supportive father. He would drive me wherever I needed to go, make my bed for me daily, and would come home for lunch when he worked close by just to spend more time with me. He truly is my hero.

January 7th, 2017:

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Although my dad is religiously Christian, I would call him moderately religious. He goes to church twice a week, has a bible study with my younger brother once a week, and the rest of the time he focuses on providing for his family. My step-mom on the other hand is strictly religious. Her religion comes before everything and everyone else, even her own kids as she so proudly states. I will touch on this later.