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Finding hope in a pandemic – Felix’s story

  July 28, 2020

I’ll never forget the moment I was diagnosed with glioblastoma multiforme, the deadliest brain cancer in the world.

I’ll never forget the significance of the date: Aug. 2, 2019, my dad’s 55th birthday.

I’ll never forget the prognosis: a 90 per cent chance I’d be dead in a year and a half.

I’ll never forget how my parents reacted: my mom, clutching her forehead, wailing in agony as my dad stood frozen, in complete shock.

And the whole world will never forget when COVID-19 became public enemy number one – the invisible assassin, bolting us all indoors, pushing us further and further apart from one another. It’s even worse for cancer patients – those who can’t get tumours removed because of crammed hospital slots; or those who are lying in cots like I did, unable to get the full care and attention they require because of overworked staff.

I first heard about glioblastoma through the coverage of legendary rocker Gord Downie, who died of the cancer in 2017 at the age of 53. Later, I found out that he and I shared the same doctors. Let’s just say that I wasn’t particularly thrilled to share the same cancer or doctors as Downie, regardless of his international renown, indisputable musical talent and all that jazz.

GBM patient Felix Wong
Felix and his mother, Irene.

One of my fatal tumours was planted in my left basal ganglia, the other in my third ventricle. My short-term memory was crushed to a pulp and my long-term memory took a couple of devastating hits as well. Never mind calling my friends to let them know the terrible news – I couldn’t even remember their first names. Luckily, two of them heard through my dad and came to visit me as I lay dying in the hospital bed. Thankfully, they didn’t ask me to refer to them by their names – the embarrassment would have driven me beet red.

Most of these tumours tend to appear in adults between the ages of 45 and 75 – I was 22 at the time. I remember my dad later asking me why I never cried. In hindsight, I think it was partly because I was initially in absolute disbelief. I had waited almost a quarter of a century to finally be independent: to someday meet and live with an intelligent, kind and caring woman, to raise a dog and to one day host Q on CBC. Never mind all of that being put on hold – it was highly likely none of that was ever going to happen at all.

No one knew – and still, to this day, no one knows – how the tumours found their way to the centre of my brain. The doctors asked if I was exposed to large volumes of radiation throughout my life. Did I smoke? Did I watch flicks too close to an old-school CRT television or stand next to the microwave on the daily?

It was all a solid “no” from me. My dad, though, still thinks to this day that the radiation emitted by the gorgeous LCD 55’ plasma flat screen I bought and set up right next to my bed half a year ago might be partly to blame. Needless to say, I disagreed, and we quarrelled about it up until a few weeks ago, but who or what pulled the trigger wasn’t as crucial as dodging the lethal bullet.

The treatment that took place in the following months was painful at times, tedious at others. Worst of all, everything just seemed to be utterly meaningless. Was there really a point in continuing treatment if I was just going to die in a year and a half, I asked my dad?

GBM patient Felix Wong
Felix in hospital prior to the COVID-19 pandemic.

Yes, he replied grimly, because if you don’t do the treatment, the doctor says you’ll die in two months. And so I soldiered on during the day, more for my family than anyone else – gulping down a few pills before reporting to radiation from Monday to Friday at the hospital for a month and a half straight.

The first few weeks of treatment, I was just going through the motions. I wouldn’t attribute my attitude to sorrow, because honestly, I wasn’t even all that sad. Whenever I thought of the things I would miss out on – things I had waited my whole life for – I felt despondent, but most of the time I was just numb. Half-dead, even. I was just waiting to die – the swelling and drowsiness from all the chemo pills, the insomnia from my memories of screaming roommates at the hospital, all of it eventually meant nothing to me.

Nothing meant anything to me anymore.

Up until December, the tumours had shown only a fraction of shrinkage, not that we found those statistics particularly encouraging. At the time, my best friend was extremely concerned about me, worried about how I would be able to carve out my place in society if I couldn’t even remember the name of the street I lived on.

It wasn’t until Christmastime that a glimmer of hope appeared out of thin air. A report came in from the hospital: both tumours had shrunk by roughly 10 per cent. It wasn’t enough to make me want to throw a thunderous house party and twist and turn ‘til the sun rose, but I was encouraged, to say the least. Reinvigorated by the first step in the right direction, I began attending therapy sessions at the Toronto Rehab Rumsey Centre in January.

At the beginning, my memory was so wasted from the tumours that I scored in the first percentile – the absolute lowest – for short-term memory. My memory was so dysfunctional that conversation was often completely one-sided – sometimes, I would forget what someone had literally just said to me.

But over time, I saw the scores rise steadily. At home, I kept pushing myself, training my memory skills with my dad. Soon, I was able to recall three random items he listed to me in the morning that I was asked to recite in the evening. By the end of February, fortune was still grinning down at me. This time, my tumours had shrunk by 40 per cent and 50 per cent compared to their original state – a massive step in the right direction.

By mid-March, I was not only able to recall four or five items my dad listed in the morning, I could finally remember what we ate for breakfast, lunch and dinner – something I had no hope of even coming close to recalling over the course of the past year or so. Moreover, I was able to have fluid conversations with my friends once again, reminiscing about the good ol’ days: before the tumours and the coronavirus barged into all of our lives, guns blazing.

GBM patient Felix Wong

It was around this time that COVID-19 swept its way across the globe and infiltrated my hometown of Toronto. My family’s concerns surfaced immediately: would I still be able to go to all my secondary medicinal institutions: acupuncture, the rehab centre or the neuroclinic? Most importantly, would I still be able to get my hands on my last batch of chemotherapy pills during the first week of April?

My parents and I debated whether I should continue to go to acupuncture or not, even if it were to stay open amid the global crisis. Theoretically, by stabbing people with a dozen needles or so each session in their limbs, feet, hands, stomach, back and even the face (ouch!), acupuncture keeps all the bodily organs in prime condition, functioning the way they’re meant to.

The medicinal practice has legions of supporters as well as its fair share of skeptics, but my dad reasoned that whether acupuncture was medicinally effective or all just a hoax was irrelevant at this point – my tumours had been shrinking month in and month out, after all. He thought it would be best for me to continue, arguing that doing anything and everything to cure my terminal cancer was more important than eluding the potentially fatal virus. But my mom and I both believed that it would be absolutely devastating if I somehow picked up COVID-19, given that my pre-existing medical condition would make me more susceptible to severe illness – possibly even death. I reasoned that there might be infected patients at the clinic, resting in the exact same beds I would be lying in, with only a quick sheet change to somehow mitigate the potential damage that might be caused.

Coincidentally, the acupuncture clinic called a few hours later to inform us that they were indeed closing up shop until April 6. A few weeks later, they once again pushed their tentative reopening date back to the first week of May. This decision also prompted us to take a break from the neuroclinic I go to on Saturdays, which examines my brainwave activity.

Finally, we pulled out of my rehabilitation program at Rumsey Centre, where I still had two weeks of speech and occupational therapy left to complete. Luckily, I was able to reclaim my driver’s license on my last day of attendance, which will be enough for me to get behind the wheel once everything is validated by my doctor at Sunnybrook.

Fortunately, I was still able to get an MRI scan done at the end of April, and although I haven’t yet been informed exactly how much the tumours have changed in size, I was told that they are even punier than before!

Even without the assistance of acupuncture, rehab and the neuroclinic, I continue to pray that my last round of chemo pills, the Chinese medicinal tea and my biological temple continue to stand strong in the eye of the raging storm. I need all the rock-solid resilience I can muster up – and a wee bit of luck – now more than ever.

Now that we’re halfway through the war and the backdrop seems to have changed entirely, I’m left wondering what resources are left for me to cling to. Thankfully, my dad was still able to get his hands on the medicinal tea provided by the acupuncturists, which he believes is one of the main reasons why my tumours have been continuously shrinking, on top of the exceptional care provided by all the hospital staff. He was also able to get ahold of my last batch of chemo, passing a quick check at the doors of Sunnybrook hospital and doing his best to avoid potential carriers indoors.

Felix and his parentsI joke time and again that there’s no need for any medicine at all – the tumours are simply too afraid of my big-ass brain. I don’t think there will ever be a more appropriate time for that to be true: I have to rely more and more on the raw strength of my mind and body during these perilous times.

If there’s one thing that battling terminal cancer has taught me, it’s that it’s far too easy to resign yourself to pessimism or apathy. There were many times when I was lying on the hospital bed and didn’t want to wake up; so many days when I had grown weary of being stabbed over and over again by sharp needles; too many moments when I just wanted to take one last breath and call it quits.

But ultimately, I realized that it’s pointless to give up hope. Life isn’t worth living if you have no will to push through the carnage and bask in the warm comfort of the things and people you love. Once I was able to paint a clearer picture of where I saw myself in 10 years, the things I would be doing and the people who would be there for me, I started to push aside the dark thoughts and feelings of nihilism that had overshadowed my entire life. Now and again, I’ll catch a glimpse of the unadulterated beauty of mere existence, the way it was all meant to be experienced.

Now, even as the entire world takes shelter from our viral adversary, I continue to keep my mind on how we can make the most of another few months of self-quarantine. I am confident that if take all the necessary steps to contain the spread – meaning we do our research, stay vigilant and keep our heads out of high water – we will emerge not only stronger but more prepared than ever before for what’s to come. Even in the darkest of times, when you may be facing unemployment or wondering if you’ll be able to scrape together enough to pay next month’s rent, you have to keep your head up and fight until your last, dying breath. That’s all we’ve got in these trying times: our conviction, our resilience and one another.