I’m asking everyone who knew and loved him to take a moment to think of him. Remember his laugh, his wit, his smile, or simply a moment you shared with him.

Please hold him in your thoughts today.

With love,
Ronnie

Jasper was my husband, my best friend, and one of the most important people in my life. He was also a son, a brother, a friend, and so much more to the many people lucky enough to know him.

Jasper was loyal, incredibly smart, stubborn more often than not, sharp-witted, endlessly curious, always dependable, and blessed with the best sense of humour. He loved good food, good conversation, travelling, and being surrounded by the people he loved. He had a way of making people laugh, making them feel welcome, and making even an ordinary day feel like something worth remembering.

For the past year and a half, he has shared pieces of his life with glioblastoma here. So many of you have followed along as we navigated the diagnosis, the treatments, the setbacks, the hope, the fear, and eventually the devastating reality that there was nothing more we could do to stop the cancer. His cancer was cruel.

Jasper fought incredibly hard.

But Jasper was never just his cancer. He didn’t let it define him. He was a person with a life that was so much bigger than the disease that took it from him.

He and I built a life together that I will always be grateful for. There were adventures and meals and trips, endless plans for the future, ridiculous amounts of laughter, and all of the little routines that, at the time, seemed so ordinary but now feel like some of the most precious parts of my life.

And there was Arlo, of course. Our little family of three.

Above all, Jasper was loved. So incredibly loved.

He leaves behind his father, Don, his brother, Sacha, and a huge circle of family and friends who loved him dearly. He was preceded in death by his mother, Sovita, whom he loved deeply. There is some comfort in imagining that he has found his way back to her now catching up, laughing, and probably cooking something delicious together.

As we all know, his life was far too short. There was so much more he was supposed to do, so many more places we were supposed to go, meals we were supposed to eat, and years we were supposed to have together.

I don’t know what this space will look like from here. For now, I just wanted to tell the people who have been here with us that Jasper is gone. A concept I am still trying so hard to wrap my head around.

Thank you to everyone who has read these posts, reached out, checked in, sent love, offered help, or simply kept Jasper in your thoughts.

Jasper will be remembered for his warmth, his generosity, his intelligence, his love of food, his humour, and his ability to make people feel like they belonged.

He will be missed beyond words. And he will be remembered always.

A celebration of Jasper’s life will be held at a later date. More details will come soon. Friends and loved ones will be warmly invited to come together, share stories, raise a glass, and celebrate the extraordinary person he was.

I love you, Jasper. Always.

You’re my Seoul mate.

—

If you would like to make a donation in Jasper’s memory, donations may be made to The Neuro (Montreal Neurological Institute-Hospital) to support brain cancer research.

You can find his official obituary here.

In Jasper’s last post, he shared that things were trending in the right direction, and they were! Until they weren’t. It crept up on us, and he’s been fighting this regression since mid- to late December.

While we were in Vienna and Budapest, soaking up the Christmas spirit by visiting their holiday markets, we noticed his right hand weakening. He had a planned MRI in early January, so we waited until then. The results showed there was some growth around his original cavity, which appeared to be necrosis, according to his surgeon. Relief washed over us.

Later in January, he had his first seizure. I’m not going to sugar-coat it… it was scary. It wasn’t like a regular epileptic seizure, though. It looked more like twitching. Uncontrollable twitching. And his head trying to turn on itself. We rushed to the hospital, where they pumped him full of Ativan and steroids. That did the trick. He was given more anti-seizure medication, diagnosed with a focal seizure, and was sent home. But more complications started to pop up over time.

Over the next couple of months, Jasper had the occasional seizure, but more importantly, a new symptom appeared. He started to slur his speech. Another MRI here and there, and necrosis was still deemed the culprit.

Come April, the scans were still not looking promising despite the yo-yoing of medications to help keep the necrosis and seizures at bay. His speech was also still slurred. With some hesitation, surgery was scheduled with the goal to help alleviate the pressure the necrosis was putting on his brain by removing the necrotic tissue.

April 24th.

Almost a year later, day for day, from his first surgery. But we were feeling good because it was necrosis after all… right?

The surgery went as well as it could have. The surgeon came to see me in the family waiting area (picture a scene from Grey’s Anatomy, minus the scrubs). He told me that they had removed one-third of the mass, which was the most they could remove without impacting Jasper’s quality of life, and that it was necrosis. Relief instantly consumed me. Tears started to roll down my face after he left.

As for Jasper, he did great and was already on his feet the next day, eager to bounce back as quickly as possible. Not his first rodeo, after all. His speech was definitely worse, which was expected, but we were told that it should come back with time and practice. He was discharged two days later. We were both excited to go home.

May 6th is a date I will remember forever.

We were in Jasper’s oncologist’s office at the Neuro for a standard post-op follow-up. We went to sit down, and as we were doing so, his oncologist asked if we had received the official biopsy results from his surgery.

My stomach dropped.

The tone of his voice and that question alone told me that our world was about to fall apart.

And it did.

He went on to read the report to us and explained that 40% of the mass removed was cancerous, while 60% was necrosis. Jasper was to start chemo again the following week. Jasper then asked about his prognosis for the first time. After all the assumptions and prefacing jargon that the doctor needs to say, he was told he had 6-12 months. We went home in shambles, in disbelief that this was happening all over again. The rest of the day is a blur.

The cancer was back.

That following Monday, Jasper took his chemo at home (Lomustine, for those who are curious). A different medication from the one he took last year. Much stronger. Much harsher. The dose is taken once every six weeks, which made coordinating meals and schedules much simpler, from a caregiver’s perspective, to be honest. But I was nervous to see how Jasper was going to react.

The next few weeks went by. Jasper was very, very tired, but thankfully he didn’t experience any of the other scary side effects they warn you about with Lomustine.

His speech was still funky, though, and still is today. That worried me, and obviously still does. From our research, Jasper seems to have some level of bradyphrenia and a form of anomia. Basically, finding words is incredibly difficult for him, along with processing information and answering questions. His short-term memory has also been affected, which means a lot of repetition for everyday things. His long-term memory, however, is still intact.

June 17th was another earth-shattering day.

Jasper had another follow up with his oncologist in anticipation of his second dose of chemo. However, things took a turn. Jasper was told he would not be taking his next dose of chemo. His most recent MRI did not show what we had been hoping for: that the chemo had helped stabilize the tumour. On the contrary, the tumour had grown, and the chemo had been unsuccessful. The oncologist said there were no other tricks he could pull out of his hat. There was nothing else he could do. Surgery and radiation were not an option anymore. And as for next steps, it involved the CLSC palliative care team, which would follow up with us at home instead of at the hospital. Before leaving, Jasper made sure to ask about his prognosis again, and the oncologist cut it in half from the previous timeline given.

So here we are.

I don’t know how else to say this, but Jasper is unfortunately not doing well.

He is slowing down.

Walking is becoming more and more difficult. Speaking is limited. Cognitively, he is declining.

It breaks my heart that these are the words I need to use to describe his current state.

On the bright side, we have moved into a condo with an elevator and no stairs to be found anywhere (unlike our old place… IYKYK). It’s big and bright, and we moved at the perfect time for Jasper’s mobility needs. It also just so happens to be across the street from my parents (which was by design), who have been nothing short of amazing throughout this whole thing.

On a final note, I just want to thank everyone who has already shown us their support over the last couple of weeks and months. Whether it’s bringing us food, running errands, sending gift cards, packing and unpacking our 100+ boxes during the move, building furniture, organizing our closets, the list goes on and on. We couldn’t get through any of this without our community. Our village. Especially our families - Carole, Shaw, Don, Sacha and Nikki.

Please keep Jasper in your thoughts and prayers. Light a candle or have a drink for him. We need all the positive energy we can for what’s to come.

With love,
Ronnie

April 1st, 2025 - The CT Scan that kicked this all off

There it is, the first view of my tumor. It’s quite faint on the image, but you can make out the contour. Definitely not something that should be in anyone’s brain! Nor was I anticipating the path it threw me down. It took over 16 hours in the ER for me to get an initial diagnosis from this scan: A left frontal intraparenchymal lesion measuring ~16mm in diameter with surrounding vasogenic edema. The kicker? The imaging report stated “less likely primary brain tumor.” Instead, it alluded to an infectious lesion. However, it also recommended a neurosurgical consult and MRI, which is exactly what happened next.

April 5th vs April 16th, 2025 - A glimpse at how quick this bugger grew

After my first MRI, on my second day at the Neuro, the diagnosis was trending towards a cancerous primary tumor. The craniotomy biopsy confirmed it. When comparing my first two MRIs, it took eleven days for the tumor to grow 25%; surgical resection on April 17th was the right call. For context, an MRI scans cross-sectional images, taking a few dozen to a few hundred images per scan. Here you can see a few of the images of the same cross sections, at different dates, which show how aggressive this thing was.

You can see that there was a second tumor that started to quickly grow around the first. On the last set, you can also see the swelling on my head caused by the first surgery. Left untreated, I would have had a few months, maybe a year at best. Again, I’m very glad I listened to my body and stubbornly stuck out that wait in the ER to get the care I needed.

April 19th, 2025 - A hole new perspective in my brain

The tumor was successfully removed! Not even any indication of edema; a clean scan. Here, you can see the cavity in my brain with and without contrast. My running joke when someone does something dumb is “I might be missing part of my brain, but I still have more brains than you.” Veronika doesn’t find it funny. I think I’m hilarious. I’ve got a few more that I use, such as calling myself saint-like (hole-y). After all, being able to laugh and keep it light and humorous are key to a positive state of mind.

Now for the next step in my treatment: radiotherapy. The goal was to “mop up” any cancer cells not removed during surgery.

May 14th, 2025 - Preparing for radiotherapy

Here you can see that the hole in my head has been healing up and swelling around the cavity has decreased. This shows my brain was more stable and ready to start my radiotherapy treatment. This scan was done to map out the contours of where the tumor was so they would know exactly where to clean up any remaining cells. This was also done so they could prepare my mask to hold my head in place during treatment. Next step: a total dose of 60 Grays (radiation unit of measure) fractioned over 20 sessions (3 Gys per session), while taking chemo concurrently.

July 5th, 2025 - My unscheduled MRI

June 23rd, I finally finished my radiotherapy treatments. However, only eleven days later, I had my unexpected overnight visit to the ER. The ER doctor ordered an MRI, which I got on July 5th. In the first image, the lighter area shows how far the swelling spread and impacted my brain functions. The impact of the motor control on my speech was the scariest one. The second image shows the necrosis caused by the radiation. That’s those webbed spots right below the cavity. You can also see the swelling: the darker area around the cavity. During the July 9th consult, Dr. Petrecca explained that these were all expected side-effects. The goal was now to reduce swelling and contain the necrosis. How? Steroids, of course. My favorite.

August 12th, 2025 - Some light at the end of the tunnel

After about six weeks on steroids to stabilize the necrosis and reduce swelling, I had my sixth MRI. At this point, it’d become quite routine. I didn’t even feel the contrast injection in my bloodstream anymore and caught myself dozing off towards the end of the scans.

A few days later, I had a scheduled consult with Dr. Petrecca on August 15th. Veronika and my Dad were there. As we walked in, he stopped and asked me to walk around a bit more. After noticing how I swung my right leg outward, he corrected my movement, telling me to focus on stairs and hills to build the muscle back up and keep my gait straight. Wouldn’t want hip surgery down the road.

Once in the consult room, Dr. Petrecca pulled up my MRI and debriefed us. He started by saying that everything he saw looked great.

On the first set of images you see the necrosis has so far been contained. You can see there is also little to no edema spreading around the cavity.

This third image shows just how much the edema which caused the swelling decreased; it was pretty much gone! You also get a different view of the necrosis here.

He then explained how GBMs typically spread 0.8 cm beyond the contrast lines on an MRI. The resection went to 1 cm. Next, he showed us that the necrosis added an additional 1.5 cm to that perimeter, effectively overkilling the tumor and any residual cells. There was still a remote chance that I could have a random recurrence in my brain, but the window for that was closing quickly. He then looked at me, grinning, and said “You hear that, it’s not coming back!” He finished by saying I’d need to be on steroids for the next few months to manage the necrosis, and it could cause problems for me in five to ten years. Not “I have five to ten years,” a potential problem to deal with in five to ten years. That really sunk in.

Everyone’s mood was lifted after that meeting. I went from having a death sentence hanging over me to instead seeing it as a “dark cloud” period. Don’t get me wrong, I’m not out of the woods yet. But, this really does flip the odds.

Since then, I’ve had another MRI on October 6th, and my next one is scheduled for November 19th. I’ve also had consults with Dr. Abdulkarim, Dr. Owen and another upcoming one with Dr. Petrecca on November 19th. All three have said things are trending in the right direction. For now, I’ll just keep pushing through and focusing on my therapies, exercises and recovery. I’ll have more to share shortly!

-Jasper

The day after my consult with Dr. Petrecca, July 10th, I had lunch plans at Clarke Cafe with Jean Christophe (JC), my work partner in financial crime (don’t panic, the books are clean). It felt great catching up, talking shop and discussing how everything in our lives was going. Before leaving, I mentioned that my therapies were still downtown. He suggested I swing by the office if I was up for it. Without skipping a beat, I responded, “I’ll be there next week.”

Over the weekend, we hosted friends for dinner on Friday and Sunday. Great food and drinks, flowing conversations, card games, and above all, wonderful company. Did we talk about my cancer? Absolutely, but Veronika made a point of not letting it take over. I still had some fun medical stories to tell at my expense, but it felt better to talk about lighter topics. It gave us a sense of normalcy where we could just enjoy the moment with our friends.

Monday ended up being a busy day for me. I started my morning with my weekly back-to-back kinesiology and music therapy sessions at Villa Medica. My kinesiologist had me follow our usual routine. I started with a warm-up on the treadmill, without any walking assistance, and then did various strength-building exercises for my arm and leg. These included wall sits, modified lunges, squats, bridging, crunches, pulling bands and numerous free weight exercises.

Next, with my music therapist, we continued to focus on my coordination and dexterity. She had me play the piano a lot, given that one of my main goals is to use my keyboard with both hands again. When we’d first started, I could barely do a single scale, and my arm had to be supported. Now, I could lift my arm and go four octaves. Unfortunately, my pinky and ring finger did lose some motor control due to the radiotherapy. Recovery isn’t linear, after all. We also used junior hand bells again, placed in various positions and heights to practice arm and finger coordination, gradually speeding up to increase my accuracy.

Not long after finishing my therapies, I met JC for lunch. Afterwards, we went up to the office for a quick visit. It was my first time back since March 26th. 111 days. It felt strange walking in, but it was still the same familiar place. Walking into the main area, I could see most people focused on their computer screens, not noticing me. I used my moment of anonymity to play a small joke on one of our developers, Eric, and told him I had an IT issue while he wasn’t looking. He turned around and it took him a second to recognize me. He lit up immediately. A crowd of about 15 to 20 colleagues and friends quickly gathered around me to welcome me back. I stayed about an hour, chatting with everyone and sharing how I was doing.

The following day, I went out to eat with my dad, my brother and Veronika for dinner. Our first family outing in a while. I even rode the metro with my brother and dad. I had already taken it a few times to get home after some appointments. Trying to respect local social norms, I stood on the right side of the escalator going down. Unfortunately, I lost my balance and fell backwards on my butt. Luckily, someone further up quickly pressed the emergency stop and I was able to get back up without much trouble. Most importantly, I didn’t injure myself. My fall taught me a clear lesson on my limitations: I have to use my good side. So, sorry Montrealers, I’m going to have to be “that guy” who stands on the left.

Wednesday morning, my dad brought me to my appointment with Dr. Owen at the Neuro. I was to start my higher dose chemotherapy cycles soon. During the consult, he walked me through the next steps: I would be completing six consecutive cycles, each cycle lasting 28 days. I’d be taking chemo for five days and then recovering for the rest. Additionally, one week before starting a new cycle, I would need to get a blood test to ensure my body was strong enough to sustain the next round. He also told me that my riskiest period was between days seven and ten after my last dose, where I was most prone to infection. If I got sick, I’d have to go to the hospital to be treated. Seemed straightforward enough.

I then asked if there were any benefits to going beyond six cycles. He told me there was no clinical evidence that that was the case, but they could reassess after the initial treatment if need be and go beyond. I finished with two questions for him: “Should I worry about my diet?” and “Can I travel while on chemo?” He reconfirmed my pregnant woman’s diet, but said there were no issues with travel, just to be mindful of potential costs of an emergency. Good! He finished by handing me my prescription and left us with the oncology nurse, Sunny.

Sunny very helpfully walked me through my schedule and informed me I would be starting the following Monday, July 21st, and answered all other questions I had. She also told me I would need a blood test before leaving. Thankfully, the Neuro had a blood draw area for just this reason. Unfortunately, I had to deal with an incompetent blood tech. First, after being given the vial labels by Sunny, I brought them to the tech who refused them because I didn’t have a paper form, even though it was in the system. She wouldn’t budge. So, my dad went to get Sunny, who in turn went and had to re-explain everything to the tech, going as far as asking her if this would be a problem going forward since it was already electronically in the system. The tech finally got the message, and hopefully understood she was wasting everyone's time. Next came the fun part: she couldn’t poke my veins correctly. It took her six bloody tries to finally be able to draw two vials - three times in my hands and three near my elbow. On one of her attempts, she even vigorously wiggled the needle and it was the first time I told anyone drawing blood to stop. I ended up having a bruise on the inside of my elbow for two weeks. Hands down, the worst blood draw experience I’ve ever had. Not that they’re enjoyable, but this was ridiculous. After that, I decided I would go elsewhere for my monthly blood tests.

The rest of the week went by quietly. I kept to my routine of household chores, meal prepping and basic cooking, being on my laptop and TV, and doing my exercise program. Being on steroids, I felt like I could keep on going and going and going. Sunday evening, however, the negative effects of the steroids finally caught up to me. I was on edge, tired, irritable and wanted to be mad at the world. Veronika was the only one around to bear the brunt of it; with monk-like patience I might add. We were in the middle of planning logistics for an upcoming group trip and I was just being negative and seeing all the things I couldn’t do. I was hyper-focused on my limitations, and just wanted to whinge about it. Veronika eventually managed to talk me through it, even jokingly saying “Welcome to your first period,” which got a chuckle out of me.

Soon enough, it was Monday, July 21st and I started chemo again. While my initial doses went well, this time my dose was doubled. Still, throughout the week I only suffered one side effect: constipation. Luckily, I had been prescribed meds for that. And they worked! There really is a pill for everything.

Tuesday evening, Veronika and I went over to our friend David’s place and met with the group to plan for our trip. I was in a much better space, having cleared the negative air of my limitations from before too. I was actually quite excited to be going, as it was going to be four couples in the south of France in October! I won’t spoil any more, as I will keep this for a future post.

Wednesday, I saw Dr. Hamel for one of our therapy sessions. We spent a good amount of time talking about my mother, the grief I felt was unprocessed and still held onto to, and how the writing really connected me with her. I was tearing up towards the end of the session, but it was happy tears about being able to express and process what I hadn’t been able to before. I still had a lot of raw emotions there, since everything went so fast with her.

Thursday through Sunday ended up being a big milestone for me. Veronika was leaving for a weekend bachelorette, and I was going to be alone at home for the first time since she went to Dublin in March. It’s important to me that she still be able to live her life and do what she wants socially. I couldn’t walk Arlo alone, though, and was unsure about taking care of myself independently. So, we had arranged for my dad to come and help me with all that over the weekend. It was also a good excuse to spend some quality time with him. We got to talk a lot, went on a few outings and shared wonderful meals, and had a good conversation about his experience with my mother Sovita’s cancer. It gave me a good perspective, as I wanted to get his feelings about how quickly it all went. I felt like it was something that had been long overdue to talk about and was very pleased he shared with me.

Friday evening, we went to Satay Brothers with Carole, Shaw and Sacha. I wanted to thank everyone for all they did, so it was my treat. We all had a great time, and it was the least I could do for everything my family had done for me.

That weekend ended up being quite a confidence booster for me. While my dad was with me on Thursday and Friday, as well as the weekend mornings, I was on my own for evenings and Sunday lunch. Being alone actually felt natural to me. Most importantly, I didn’t feel dependent on someone for my needs. Because of all that, I felt like I took a large step towards regaining my pre-diagnosis independence.

Sunday evening, I had friends over for dinner. These were people from high school and cegep (Quebec pre-university school) that I hadn’t seen in years. They were initially shocked when I texted them the news. However, it didn’t dampen the evening one bit. In fact, it felt good catching up with them, as if just picking up where we left off. The only difference they noticed in me is I was balder from the radiotherapy and rounder due to the steroids.

The end of July passed quickly. I did start to feel another side effect from the chemo: fatigue. I couldn’t tell if it was just that or also a combination of restlessness brought on by the steroids. Regardless, I listened to my body and rested when I needed to, saving my energy for therapies and socialising. In fact, during a dinner we hosted, one of my good friends, Jessy, said something that really resonated with me: “Only you could make me forget you have terminal brain cancer for the past few hours.” It really got me thinking. Yes, while I have brain cancer, I’m not letting it define me. I am the driver; cancer can be the passenger now.

-Jasper

I want to acknowledge and thank someone who has been essential in sharing my story: Sacha Fyson, my little brother. While it has been about my journey with brain cancer, he has been equally important in making sure the quality of the content has been up to par for you. Helping me with flow, structure, editing and other general feedback, this has been a project we both share and I find has been a great way for us to connect and spend more time together. For those who know us a bit more, we weren’t the best of friends growing up. In fact, I was quite mean and spiteful to him as a child and teenager (sorry Sacha…). It wasn’t until much later in life that we started finding more common ground, understanding each other and our quirks, and appreciating each other’s dry and witty Fyson humour with a side of banter. For me, this experience has been one more positive that has brought us even closer. It has also been a way to honour our mum, who loved writing and sharing short stories, and blogging about her own brief journey with brain cancer.

On that note, thank you very much Sacha. I hope to keep this up together as long as I am able.

Love,

-Jasper

P.S.

Since my ER visit and consult with Dr. Petrecca, I have been in a good headspace overall. The steroids have significantly helped (except for sleep). I'm mostly keeping busy with weekly therapies, house chores, reading and writing, exercise and walking, and spending time with friends and family. I also completed my first cycle of chemotherapy and am pleased to report my body reacted well. I will be sharing a more detailed update of how these last few weeks have been very soon. Until then, here's a video of me ringing the bell to celebrate my completion of radiotherapy.

Suddenly, my grip gave out and I dropped the loofah. “That’s odd,” I thought. I looked at my hand and my fingers all started curling inwards like a claw. My wrist began to bend inwards too. Even my elbow began to freeze and contort. “Oh shit!” I exclaimed, eyes in disbelief. All of a sudden, I couldn’t control my lower right arm at all; only my shoulder would move. I was so shocked I couldn’t even appreciate that my arm had become like a T-rex’s. Water still running, I focused my energy on finishing up. I bent down to pick up the loofah with my left hand, quickly washed and rinsed myself off, dried off, got dressed and went to sit on my bed.

I felt winded after that ordeal, so I took some deep breaths to relax. As I was doing that, I could feel a little control coming back to my lower arm. It wasn’t much, though. Shortly after, more symptoms started showing. I could feel some tingling sensations across my right side: on the tip of my fingers, on my foot and toes, on my cheek and lips, and on my lower abdomen. My foot also started to intermittently shake uncontrollably. Now I was getting worried, and immediately called Veronika over for help.

It passed after a few minutes, so my first reaction was to call the radiotherapy department number I was given, but unfortunately I did not get an answer. Next, I decided to write an email explaining what happened to Dr. Abdulkarim so he was aware of my situation. Not long after that, my symptoms came back. We decided to leave and head to my favorite place: The ER. This needed to be dealt with ASAP. We quickly headed to the car and drove off.

During the drive, I could feel the tingling coming and going. I was giggling because my abdomen felt ticklish, but I was far from laughing at the situation. Veronika was getting nervous, but remained focused on driving. As we were pulling up to the all-too-familiar MUHC Glen site, something even scarier happened to me: I lost the ability to speak.

I was trying to tell Veronika “That way,” giving out directions, but all that was coming out was “Tha. Th. Th… Tha… Th.”. I couldn’t even picture the words in my head, as if I completely forgot the concept of a word. Veronika thought I was joking, but quickly saw my eyes wide with panic and knew I wasn’t. I was stuck in this loop for about a minute, but it felt like an eternity. To snap me out of it, Veronika told me to take a deep breath and say my name. I inhaled, clearly pictured my name in my head, and blurted out “Jasper!” after a few seconds. Thank goodness I was able to reboot. It took me an incredible amount of energy and concentration to say my next few words to her. I had to visualize each one before saying it out loud, and I couldn’t go more than a dozen at a time without taking a short break. I sounded very winded, as if I had just sprinted a mile.

Moments later, we walked into the ER and were seen within minutes. Still slow with my speech, I explained my cancer situation and current symptoms to the triage nurse and she bumped me to the top of the list. She said they wanted to rule out a stroke. After a few tests and a blood draw, taking into account that my condition was stabilizing, they ruled that out. They sent me back to the waiting room to see the doctor. In the consult room with the doctor, I explained my symptoms and situation and she ordered a CT scan. The scan indicated swelling in my brain, most definitely caused by the radiotherapy.

Back with the doctor, she told me I would be treated with my most “favorite” drug: steroids. Specifically, Dexamethasone. “Sleeplessness and insatiable hunger here I come,” I thought. Nevertheless, that’s the prime choice for treating brain swelling. She also told me they would keep me overnight and perform an MRI tomorrow to rule out any additional variables not visible on the CT scan.

Moments later, a nurse, Ian, walked in with a syringe containing 10 mg of Dexamethasone. He was very friendly with us. He told us how his own mother also had a glioblastoma, so he knew what I was going through. He then injected the steroids into my IV, and seconds later my entire body suddenly began to itch intensely. I jolted up and had to scratch all over my body for a very long minute. Thankfully, the itching passed quickly. He then brought me to a gurney in the hallway where I would be spending the night. He also went and found me a sleeping mask and some food. I was so grateful for his kindness. I was already having a crap day and his care really helped me end my Friday on a better note.

At this point, it was late and we had spent several hours at the ER. Both Veronika and I were exhausted and felt defeated. While it was a relief it was getting dealt with, the reality of being back at the hospital hit us hard. We had just started easing back into our life routine, and had plans to see friends the following day. Instead, we had to cancel them, waiting around a gurney for a brain scan.

I slept no more than four hours that night, so I felt miserable and cranky in the morning. To make matters worse, when I asked the nurse who brought my morning pills when my MRI would be, she responded, “Oh, it might be Monday in the end since we don’t have anyone for the weekend.” Lovely… it just kept piling on. Veronika was in disbelief when I told her after she arrived. Given the severity of my symptoms and this unforeseen delay, my dad immediately drove from Quebec City to see us that Saturday and take over for Veronika. She really needed a break, and it was a good opportunity to spend more time with him.

A few hours later, I was told my MRI would actually be that afternoon. What a relief! I was so eager to leave. Around 2:00 p.m., someone finally came to get me for the scan. This was my fifth one, so I knew the drill. I actually found it peaceful, even dozing off during. Afterwards, we headed back to an inpatient waiting area. Not long after, a nurse came by and told me Dr. Beique - the same ER doctor who had initially found my lesion back on April 1st - would come see me shortly. My eyes light up a bit. “I’ll get a chance to give him an update,” I thought. After chatting a bit, he remembered me and was very pleased that I had a top care team surrounding me. He handed me a prescription for steroids and said the words I had been waiting to hear all day: “You’re good to leave.”

And I was out of there! Veronika and I said goodbye to my dad and thanked him for bringing us some goodies and company. We had plans to go see friends at a barbecue that evening, so we rushed over as quickly as we could. Going from a windowless ER area to a backyard barbecue with great company and delicious food really lifted our mood. A huge relief and complete 180 in our mental state. Just knowing and experiencing such a good support system really helped put things in perspective. Boy did I have a story to tell that evening too!

Sunday, we took it easy. We were just happy being back home and resting. That morning, I also got a response from Dr. Abdulkarim, saying he would call Monday. The following day, he explained in a very reassuring tone that after looking at my scans this was indicative of an expected side-effect of the radiotherapy. Based on my symptoms, it was all localized in the treated area and the steroids were the proper course of treatment. He also mentioned that the techs suggested on the MRI report that there might be a recurrence, but he quickly dismissed that possibility. He finished by telling me not to hesitate to reach out if there were any other symptoms that surfaced.

I felt relief after that call, but it soon faded with another unexpected call from the Neuro: Dr. Petrecca wanted to see me in person on Wednesday morning, July 9th. Initially, my next consult with him wasn’t supposed to be until August 13th. I assumed he’d already seen my scans and had news to share. Both Veronika and I started to worry a little, our “scanxiety” gradually building over the next few days.

Wednesday morning, Veronika and I went to see Dr. Petrecca. A few moments after arriving, he called me to his office. He started by asking what the symptoms I experienced were. After I summarized everything, he showed us my MRI scan. First thing he confirmed: the cancer was not back. Instant relief! He then compared my pre- and post-radiotherapy scans, showing where cerebral edema had spread and explained how it had caused my symptoms. He then pointed to another area on the scan and stated “See this area? It’s necrosis. This is expected with the high level of radiotherapy you went through. The goal is now to contain it and make sure it does not spread.” He explained that having treated many cases like mine, he did not need to operate again to remove the necrotic tissue. Great! I wouldn’t have to go in for a third surgery yet.

As a treatment, he prescribed Dexamethasone for at least the next month. On top of increasing my appetite, restlessness and wakefulness, he told me prolonged use could cause other undesirable side effects; osteoporosis and muscle atrophy to name a few. However, this was the best way to get the swelling down and contain the necrosis. I gladly accepted the lesser of two evils. Plus, I figured I could put the extra “energy” it would give me to good use.

I then showed him my right leg’s mobility. While sitting, I moved my ankle up and down. Next, I stood on my right leg only, and, using his desk for balance, did some shallow squats. He looked over at Veronika and said to her, smiling, “He really is a unique and particular case.” Pointing at the cavity on my MRI, he said, “Where is his leg?” to the both of us. The brain truly is marvellous. According to him, he took my leg out during surgery. He then finished by saying he would schedule another MRI in August to see how I would progress. As we left, I thanked him again for everything and shook his hand with my right.

Overall, this was a scary experience. Losing control so suddenly was unexpected. Unfortunately, it’s probably not the last time I’ll have to experience something like this. However, we’ll be ready for the next time it does. I’ll continue to face this head-on with determination and stubbornness. As long as I still have my wits about me, I will not let it dictate what I can and can’t do.

-Jasper

In June, I focused on resting and easing into a home routine. My radiotherapy sessions were always in the afternoon, Monday through Friday, so my weekdays revolved around that. Additionally, Mondays I had blood drawn for tests, and Tuesdays I had consults with one of my radio-oncologists, Dr. Abdulkarim or Dr. Khan; all that at Cedars too. Aside from that, I kept busy by doing exercises from my program, walking with Veronika and Arlo, and resting on the couch while either reading, watching TV, gaming or napping. I also kept busy with house chores, so much so that Veronika started calling me Dobby the house-elf. Guess I have my next Halloween costume idea. We also went on occasional outings such as to the grocery store, market or a restaurant. Most importantly, we had many visits with friends and family. To this day, I’m still seeing a lot of people. Thank you everyone, it helps enormously. Overall, this adjustment period really gave me back a sense of normalcy and helped me turn off my brain for the first time in months.

I also started seeing a psychologist, Dr. Marc Hamel, at Cedars through an MUHC referral program. Talking through my experience with cancer has helped my mental health a lot and he has been able to provide me with excellent perspectives. One topic we covered was how important it was to believe in hope, despite the prognosis. When he told me this, I fully agreed, but asked: “How?” He explained that it was good to think concretely and gave the example of my right leg. Pre-op, Dr. Petrecca had expected I would lose full control of it. Look at my leg today: it's functional and it keeps improving. “That's hope,” he stated. That really resonated with me.

Furthermore, I’m pleased to say that I only started experiencing my first side-effect from radiotherapy around my fifteenth session: hair loss. Up until that point, Veronika and I had joked that I was just getting a placebo treatment. It sank in after that. Nevertheless, I was relieved it wasn’t worse… at the time. Before I knew it, June 23rd arrived and I had my twentieth and final session. Immediately after finishing, I got to ring the ceremonial bell while wearing my “Shit Happens” baseball cap from Cedars - a great purchase that’s very much me.

That same week, my music therapist contacted me about continuing weekly outpatient therapies. We scheduled an appointment for the morning of the following Wednesday, July 2nd, and since then I have had weekly back-to-back sessions with her and my kinesiologist at Villa Medica. Occupational therapy and physiotherapy will start again later, at a different facility and with new therapists.

A few days before my therapies, I started to notice that my right-hand ring and pinky fingers as well as my wrist weren’t fully extending. “Must be because I’m not exercising enough and also because I’m holding a game controller a bit too long,” I initially thought. During my first outpatient sessions, both therapists agreed with my assessment. I had expected recovery to have some ups and downs, so it came as no surprise to me. As they say, use it or lose it. Or so I thought until the morning of July 4th…

Getting back from the hospital, I had a busy week ahead, including the start of my chemotherapy. Monday began early, with a visit to the fertility clinic. Unfortunately, my treatment involved risks of infertility. Therefore, as an insurance policy, I went to bank a specimen. I arrived at 8:00 a.m., starting with a blood test; Canadian fertility clinics are required to test for certain STDs. The nurse poked me six times just to get two vials. “Small veins,” guess you get used to it after a while! Next, came the banking. I was told to go into one of two rooms and place my specimen in a cup which would then be placed in a metal vault on the wall. The room was dim, containing one recliner, flickering lights and a desktop. I did not even want to go near that desktop, nor did I want to spend much time in the room…

After I finished, I made my way back to rehab for my scheduled therapies, starting with physiotherapy. While I couldn’t walk much with my gout, it didn’t stop me from doing exercises lying down. Namely, balancing my legs on a yoga ball, holding a bridge, low-weight bench pressing and working my abs out. Still got my sweat in! That afternoon, I went to see my occupational therapist. We started with some control and dexterity assessments, comparing my left and right side. Obviously, my right side scored significantly lower than my left (definitely because I’m a lefty). We then worked on exercises to build back my shoulder extension, since it was still too weak to hold my arm up. My day finished with a pleasant surprise, though: I was able to lift and hold my ankle. I did not have this pre-op.

The following day in the afternoon, I had another occupational therapy session. Again, we worked on shoulder and upper arm exercises, but at a slight incline so gravity was against me. After that, I met with my physiotherapist, who was thrilled to hear that I could move my ankle. We worked a bit on ankle movements along with the previous day’s exercises. She finished by having me pedal on a seated stepper for a few minutes. That night was another milestone: I was taking my first dose of chemo pills (Temozolomide). Just like all the other firsts in my journey so far, I had a lot of questions. Would I be nauseous? Would I be too tired for my rehab? Would it weaken me, physically and mentally? I kept reading reddit threads about people’s experiences, but at the end of the day there really is only one way to find out. So, the evening nurse handed me my pills and I took them with a large glass of water. Nervous, I was anticipating something to happen or some reaction in my stomach. I kept waiting, but thankfully nothing happened and I’m pleased to report I felt no side effects. I slept like a log that night.

Wednesday morning, I saw my physiotherapist. Same exercises, but at a higher intensity. In the afternoon, I had an assessment meeting with my therapists. Veronika also joined via phone. We went over how rehab had been going, what the next steps would look like based on my set goals and level of motivation. Everything was going in the right direction. They also proposed signing me up with two new therapists: a kinesiologist and music therapist. The goal was to increase the intensity and add complimentary exercises to my recovery. Yes please! The more I do, the more I recover. I’ll take any opportunity I’m given. I was also told I was getting a new physiotherapist, since my current one had been promoted which unfortunately meant no more patient sessions. Nevertheless, I was really happy for her! I ended the evening with my second dose of chemo. No side effects again. Good!

The following morning, I met my music therapist, Hélène. We started by getting to know each other, talking about my goals and treatment. She then asked if I knew what music therapy was. I said “Absolutely no idea,” but that I was very open to learning. She explained that it was the use of instruments and rhythm as a therapy to stimulate the brain. In my case, it would be applied to help redevelop my dexterity and fine motor coordination. I was convinced on the spot! We spent the rest of the session doing some right arm exercises. First, she held out a set of hand drums. She would have me hit them with my right hand and then move them to a new position, working my arm extension quite a bit. Next, we played the piano. It was too hard to hold my arm up, so we supported it with a pillow on an arm rest and focused on finger movement. I started by trying to play any key, then just the black ones. It was challenging but I had a good range and control of my hand. Given I work on a laptop, it felt great to see that this skill could come back. In the afternoon, I had another shoulder and elbow extension session with my occupational therapist, upping the intensity ever so slightly once more. This time, I was pushing bean bags up an inclined plane and over a ledge. I did over 100 reps. Repetition, repetition, and more repetition. That’s the key to this. I finished with my physiotherapist. My gout being under control, we went back to walking. We got me in a harness and I was on my feet the entire time. Walking with a cane, with a walking stick, going sideways, going backwards, walking without any support even! I fumbled a lot, but hey! That’s what the harness was for. It just felt good to be on my feet again.

Friday morning, I had another victory: independent bathroom use. The previous week, my occupational therapist had shown me techniques to transfer from my wheelchair to the toilet and hold on with my right hand while my left managed my trousers, but told me to go with supervision and practice for a week before clearing me. Despite the added handicap of a gout-riddled foot, I managed to perfect my technique. When I showed my occupational therapist, he was comfortable enough to let me do it on my own. “Thank god! No more waiting on the bells to be answered. Such a time-saver,” I thought.

I then went to meet my kinesiologist, Grégory. We got to know each other as part of the introductory session and went through my objectives and goals. He explained that he would complement my physiotherapy exercises, focusing more on overall strengthening, breaking down body movements, and improving my core and balance. We then finished with baseline assessments: knee raises, sitting and standing without using my hands, and modified ab crunches in a chair. An enjoyable and sweaty first session! I finished the day off meeting my new physiotherapist, Maxime. He was much younger and really pushed the boundaries with me. His goal was to keep my heart rate elevated within the yellow zone (i.e., above 70% of my max heart rate). And boy did he. All in all, I walked about 250 m and went up and down 14 steps. Including breaks, my average heart rate during the session was 129 bpm. Not quite boxing level - I used to push 165 - but I’ll be back there in no time! In future sessions, my average heart rate would only go up from there.

Shortly after my final session of the week, I was back at Carole and Shaw’s for the weekend. Spoiler: I did not go to the ER this time. Over the weekend, I decided not to use my wheelchair. I was lent a cane, so I thought, “Might as well put it to use.” Going to the bathroom? Walk. Having a meal at the table? Walk. Going to bed? Walk. I also had enough balance and strength to brush my teeth, wash my hands and shave, all while standing. More wins and gains towards getting my “normal” life back. It also felt good to be in a home setting again, especially for my mental health. Before I knew it, though, Sunday night came around and I was back at rehab.

The following week, I really started to get loaded up with therapies - eleven across all four therapists. My physiotherapist wasted no time. He had me on my feet and working hard that week. On top of all the assessments and walking exercises, he also had me put on 14 lbs weighted vests while I walked to add more resistance, had me drag 60 lbs’ worth of weights tied to my waist with a rope, and I walked up and down several flights of stairs. We finished the week with a 1 km walk outside (broken up in chunks of several hundred meters), alternating between gravel, the sidewalk and grass. It was a grueling 50 minutes, but taking such a long walk for the first time outside was incredibly satisfying.

With my occupational therapist, the game was repetition. Every day with him I was doing hundreds of shoulder extension exercise reps. I even did the exercises while standing to use my legs and balance. And, each new day, he would up the difficulty of the exercise. Day one: the exercise surface was flat and I was reaching with my arm extended so my shoulder would move back and forth, back and forth. Day two: same movement, but while holding a cup. Day three: moving my shoulder in more varied directions. Day four: working on an incline so gravity would be against me. Each session, I was doing 3 to 5 sets of 100 to 150 reps. During the so-called “rest periods” between sets, I was doing wrist extension exercises. By the end of the week, I was able to lift my whole arm straight above my head for a few seconds. A major accomplishment.

With my kinesiologist, we focused on balance and trusting my right leg again. The muscle was still there, but the control wasn’t. Using my hips as a guide, he told me to shift them rightwards. Then, he had me close my eyes and stand still for ten seconds. Initially, I had a lot of trouble, but I caught on quickly after he used a mirror so I could see the movement - funny how the brain needs that visual cue to develop the reflex again! After using the mirror, I was up to thirty seconds. He also taught me some stretches that helped relieve a huge amount of pressure; sitting in a wheelchair will do that to you!

With my music therapist, we also kept upping the ante. Using the same instruments, we increased tempo and duration. She also incorporated castanets, which I was able to manipulate and alternate between fingers with my right hand only. Great for my dexterity! On the piano, we also did exercises where I had to mimic the notes she played.

Each therapy session was effectively a workout; by the end of week I was exhausted! Still, I’m glad I was able to keep up. I’m walking that fine line between maximizing intensity and not depleting all my energy. So far, so good. Additionally, since I was back to moving on my feet much more, Dr. Hamidou (the rehab doctor following me) decided to take me off my blood thinner (Heparine). For those who don’t know, this was a twice a day stomach injection that I was on for a month - and you know how much I love needles… However, my mum’s official cause of death was a pulmonary embolism, most likely caused by the GBM impacting her mobility and her doctor’s decision to disregard blood thinners as necessary (despite my parents asking about it). So, acutely and intimately aware of the risks, I had gladly opted for the needles. Getting off of them was another big win.

I also had my radiotherapy mask fitting appointment. They did an MRI (fourth one) and molded the plastic to my face. In my previous post, you can see it on the table. It’s effectively a hockey goalie mask with my eyes and nose uncovered, immobilizing my head during treatment. And, of course, I was still taking my daily dose of chemo; two weeks in and still no side effects. Good!

Back at Carole and Shaw’s for the long weekend in May, I again kept pushing to do a little bit more every day. I walked to the grocery store with Veronika (500 m each way, took me 25 minutes per direction), unloaded the dishwasher and put dishes away, served myself food from the fridge, got up at night to pee instead of using the urinal, and did not use my wheelchair at all. Every little increment matters to get back to where I was. Funny how you can take things for granted for so long. Time flew by, and I was back at rehab.

The week of May 20th, I had one goal in mind: go HOME for the weekend and sleep in MY bed. I had a lot of therapies lined up that week, so I knew what to work on. For context, I live on the third floor of a walk-up. Therefore, with my physiotherapist that meant one essential exercise: stairs. And that’s what we focused on. We started the week going up and down three stories (each story was about 14 steps), then pushed to five, and just to beat another patient’s record, I went to nine floors up non-stop (sometimes even skipping a step), took a small break and then did all nine down again non-stop, for a total of 126 steps each way. I was really pleased with my progress! Despite all those stairs, he didn’t relent when it came to walking. He had me fast walking, walking without any support, walking up and down a parking garage ramp, walking while carrying weights in my right hand or dragging them behind me. We even tried getting me on a stationary bike - getting on was the hardest part by far. I only pedaled a minute, but I was thrilled that it was realistic for me to hope that I might one day get back on a bike.

With my kinesiologist, we focused on my strength, especially in my hamstring. While my quad had been getting put through the ringer, I still had difficulty bending my knee below 90 degrees. Sitting down, he had me drag my heel across the floor and bend my knee towards me as much as possible. We also did some right leg presses, assisted right leg squats, knee raises, and bridging with a yoga ball. We also incorporated some core strengthening and sitting pushups, where I would sit up by pushing against my knees with my arms.

With my music therapist, we just kept increasing intensity and difficulty. The goal was to improve my speed and accuracy as much as possible. And it was working! She also tried a new instrument with me: junior hand bells. These bells had a push button on the top of the handle, so I had to control my arm and, either using my finger or palm, press down on them to play. This was surprisingly difficult thanks to the dexterity component.

My occupational therapist was on a well-deserved vacation for the next few weeks, so I was assigned to a new one, Camille. She was the one who had cleared me to pivot from my wheelchair to my bed on my first weekend at rehab. I was proud to show her my progress. Other than the usual wrist and shoulder extension exercises, she also incorporated more functional tasks for me to try. These included carrying an empty glass in my right hand, transferring into a shower chair alone, pushing a dry Swiffer mop on the floor, and using a washcloth in circular motions on a flat surface. I finished the week with a complex task: cooking breakfast. Unfortunately for those who remember the Nxtsens Christmas breakfast, I didn’t try to cook an elaborate meal from crepes, fruit and puff pastries. Instead, I was content to make scrambled eggs, toast and filter coffee. Still, I was on my feet and had to figure out everything myself: gathering ingredients, preparing and cooking the eggs, toasting the bread and buttering it, measuring out and brewing the coffee, and finally serving it all out. I dare you to try that with a shaky, semi-functional arm. It was therapeutic to be in the kitchen again.

On Friday, May 23rd, Veronika came to get me around noon. As we drove home, the anticipation was building for me. Soon, we were on our street and pulling into our parking spot. I got out of the car, started walking up those familiar steps, heart pounding and emotions rising. I made my way to the top, opened the door and finally stepped into my own home. Veronika asked me how it felt. “It feels weird,” I responded. But it was a good, overwhelming and comforting weird. I was also relieved. It took 54 days, but I did it. That night, my bed had never felt more comfortable. I slept like a rock. That weekend, I was thrilled being with my own creature comforts too: my couch, my tv and my gaming console. Spending time with my beloved wife and dog in our home was nice too, I suppose. All good things come to an end though, and I was back at rehab Sunday evening.

The following week, I received some big news: given my progress, I would be eligible for a discharge the following Thursday, on June 4th. This was great! I had been expecting to be there longer, but having had a taste of home I was eager to be out. Nevertheless, my therapists didn’t let me off easy. So, on top of all my ever-increasingly intense exercises, they worked on building me an exercise program for home.

This was also the week I started photon radiotherapy. I had a total of 20 sessions to complete, Monday through Friday for four weeks. My radiotherapy was administered at the Cedars Cancer Center, at the MUHC Glenn site. My first session was May 27th. During that visit, I was told I would be getting weekly blood tests (yay…) and scheduled consults with my radio-oncologist. Shortly after, my name appeared on the call screen, prompting me to go to my assigned machine. There are a total of eight linear accelerators at Cedars, four pairs specializing on a given body area. My pair were machines 1 and 2. Following the signs from the waiting room, I walked down a very long hallway, turned to see an even longer hallway and finally made it to the end to another waiting area with two doors, each going to one of the machines. One of the radiotherapy techs called me and I entered through the control room door. They confirmed my name, date of birth, and when I last took my chemo pill - it had to be at least an hour before treatment.

They brought me through another corridor into the machine room. The tech's nickname for this room was “The Bunker.” I found out why it was called that when I saw there was no reception on my phone; they had to contain all the radiation coming from there. Inside, I laid down on the table, placing my head on the back half of the mask. They clipped the front of the mask on me to immobilize my head and raised the table, lining it up using a green positioning laser. I must’ve been at least five feet off the ground at that point. The tech left the room and directed some X-ray panels to scan my position. A few moments later, I felt the table tilt a bit as it adjusted to the result of the scans; these machines have to be precise down to the millimetre. Finally, the linear accelerator started. Through the glass, I could see these small metal rods moving up and down, controlling where the radiation would be targeted as the machine spun around. After a few rotations, the machine stopped. Shortly after, the tech entered, lowered the table and unclipped the mask. The process only took about 15 minutes. “All done, see you tomorrow,” they told me. Tomorrow. That’s right, I had another 19 sessions to go.

And so, my stay at rehab was coming to an end. In these last few days, I had regular therapies in the morning and radiotherapy in the afternoon. With every passing day, my eagerness to go home was turning into homesickness. To make things easier for myself, I did what I always do when changing environments: build a plan. Veronika and I worked on clearing as much out as possible. We also created a schedule between my dad, Veronika and her parents to plan on who would take me to radiotherapy and when. I’m really grateful to have such a good support system and a wonderful family. I also ordered any equipment I would need: footdrop brace, walking stick, cane, home weights, etc. On June 3rd, I also had a debriefing with my therapists and Veronika to set at home expectations and next steps, which included being followed by outpatient therapists.

June 4th was finally here. I was out of there by 11:00 a.m. Carole and Shaw picked me up and I stayed with them over the weekend, since unfortunately Veronika had a work conference out West. Still, I was out and worked hard for it. I was brought back to Pointe-Saint-Charles on Monday with Arlo, and Veronika joined us that evening. I was finally, truly home.

-Jasper

Living on the top floor of a walk up, I had to get used to going up and down the stairs again. Here’s a video I took while practicing.

I’m going into my fifth week of chemotherapy and so far an, I’ve got no symptoms from that. I also started radiation therapy. I’m on my ninth treatment; eleven more to go. For now, I’m only slightly fatigued from that and the physical therapies I’m going through. For those of you who’ve never seen a linear accelerator and mask, here’s the one I've been in:

My arm strength has made good progress too. Initially, I was barely able to move my wrist and extend my arm. Over time, I've managed to get a good amount of my control and mobility back

Regaining control over my muscles has even allowed me to lift weights again! In the video below, I’m lifting an eight-pound kettlebell.

As you can see, I’m doing very well! I’ll give you a more detailed update in the following days.

- Jasper

A good time to relax, right? Wrong! Throughout Saturday I could feel a growing soreness and swelling in my right foot (especially around my big toe joint). As the day progressed, the pain worsened. It got so bad that it woke me up in the middle of the night and I couldn't even pull sheets over my foot without being paralysed from the pain. Once again, I was kept from falling asleep. At first, I thought my bunion and the new velcro shoes I got from rehab caused this. It was a lot more painful than previous experiences though, so I looked up my symptoms online. Well, after a bit of research, I came to a different conclusion: I was having a gout attack.

I got a text from my Dad early, around 5 a.m. I told him what I thought it was and he responded that when he saw my foot Saturday it looked a lot like gout. “Great… I inherited his hypertension, and now his gout. Hopefully, I at least get his low cholesterol too,” I thought. He suggested the last thing I wanted: another trip to the emergency room. Unfortunately, I knew it would only get worse and I needed treatment to deal with it. So, I begrudgingly accepted his offer to drive me there. We arrived around 7:30 a.m. at the same ER waiting room I had sat in on March 31st. “Back to square one,” I said to myself. Again, I got triaged quickly. This time, I made sure to use my brain cancer card (one of the select times cancer can be a benefit) and told the triage nurse I had to go back to rehab in the evening. It worked; I saw the doctor directly within two hours this time, not sixteen.

During the consult, I showed him all the meds I was taking and he examined my foot. He agreed with my gout assessment and said that the steroids I had been taking were helping mask it due to being an anti-inflammatory. Just to be 100% certain, he scheduled me for a consult with the on-call rheumatologist. He gave me two Advil, and back to the waiting room I went. Another two hours went by and I got called again.

I went to see the rheumatologist. She examined my toe and asked about my medical and family history. Based on those factors, she told me it looked like a classic case of gout. She still wanted to run some blood tests (needles, my favorite) and take X-rays of my feet to check for broken bones, misaligned joints, or anything else out of the ordinary. Thankfully, she spared me the most accurate, yet painful diagnostic test: an extraction of joint fluids performed using a large needle. After a nurse came by to draw some blood, I left the room to get my X-rays. After having those taken, I returned to the waiting room.

After about an hour of waiting, I was called back. The rheumatologist confirmed that this was highly likely a gout attack, that my uric acid levels were slightly elevated and that the X-rays showed nothing abnormal. Now, here's the kicker. The usual medication for treating gout attacks is Colchicine. However, it's very harsh on the liver; given that I was starting chemotherapy imminently, this was not an option. The solution? More steroids. For the next fifteen days. At least it was Prednisone, which is much less potent than Dexamethasone. Regardless, I thought, “more sleepless nights, here I come!” I left the hospital with a prescription and drove to a pharmacy with Veronika to get my meds.

So, there you have it. My first weekend home in five weeks included an eight-hour visit to the ER. Great way to spend your Sunday! While I’m glad this got dealt with, I hope the gout never resurfaces.

- Jasper

Friday afternoon was busy, and I could feel my stress building. Around noon, I got my orientation by the admin nurse, Julien. He started off by bringing me lunch. While I ate, he walked me through what to expect during my stay; daily therapy sessions during the week, transport to medical appointments, and other general administration and medical management items. I asked a lot of questions (of course I did) and he was very friendly and informative. He finished by telling me that depending on my progress, I could get a weekend pass as early as the following week. My eyes lit up and I thought, “Alright! An objective to work towards for the week.”

Not long after, I had a consultation with Dr. Hamidou, the on-site doctor following me. We went to my room and he asked about my medical history, and performed a physical assessment of my motor and neurological capabilities. As always, I had all my detailed and endless questions ready to fire at him. And as always, the answers were given with care and attention.

Finally, I saw one of the occupational therapists, Catherine. She assessed the functionality of my wheelchair and my general capabilities, and got a better understanding of my routine at the Neuro. We practiced a pivot from the wheelchair into bed. I managed fairly well, but she still recommended I always have assistance for any transfer I would do. Perfectly fair. The last thing I wanted was an injury to set me back.

By the end of the afternoon, I was frazzled. So much information and a completely new environment to contend with. To ease my mind a bit, Veronika found a Scrabble box and we played a round. Guess who won? Well, I finished with twice as many points as her - I'm still very competitive. It helped, but soon, I was obsessing again, this time over my meds - the schedule was all messed up. Thankfully, the evening nurse walked me through my new medication schedule. I spent the rest of the evening with my dad, but was still out of my element and rambling. I did not sleep well that night.

I completely crashed over the weekend. My body exhausted, I took a lot of time to rest. I also familiarised myself with my new environment, and adopted new routines to be ready for Monday. In hindsight, arriving on a Friday was beneficial due to the adjustment period it gave me before therapy started. I also got a birthday present from my dad: my own, personal wheelchair. It was much more comfortable and had better usability than the loaner. Even if I were to use it for only a few weeks, it made a major difference for me. Furthermore, because its brakes actually worked, unlike the loaner’s, the occupational therapist cleared me to transfer from my wheelchair to my bed without supervision. One more step closer to independence.

Monday morning, I tackled some administrative work; mainly writing out a detailed schedule to manage my countless medications, my meals, therapy sessions, medical appointments, and, of course, my numerous personal visits. Seeing everyone has really shown to me how appreciated I am and made me feel like more than just someone who’s sick. Organising my weeks kept me busy that morning.

In the afternoon, I had my first session with Annie, the physiotherapist assigned to me. After getting to know me and discussing my goals and treatment plan, she wasted no time to get me on my feet. She put me in a harness, handed me a four-prong cane and had me practice walking. She stayed by my side the whole time, providing me with pointers on how to use and trust my right leg. Over the course of half an hour, I built up a good sweat by walking about 200 steps. The rest of the evening was spent taking it easy and watching the Canadian elections unfold.

The following day, I had another demanding physiotherapy session late in the morning. We started by testing out how well I could move my arm. She had me try out many, many different movements, including a sawing motion (pulling was easy, but pushing was astoundingly difficult), finger guns, holding my elbow to my chest, rotating my forearm on itself, and bending my wrist. I didn’t pass every test, but I actually managed to perform relatively well with most of them.

After that, we got to the main activity: walking. We didn’t use a harness this time; I just had my foot-drop brace and cane. I had to teach myself to walk on my bad leg, putting weight on it and making sure it was bent at just the right angle. I went two laps around a 35-metre track, only stopping between each lap. I was fairly uneasy on the first lap, with the muscles in my right-hand side tensing up, arm included. I was so focused I forgot to breathe at times. After getting used to the motion, I had a much better time with the second lap. Overall, I had a great time exercising; I felt so gratified, beaming uncontrollably. For the remainder of the day, I took it easy and rested up for the next day, which would prove to be the busiest of the week.

As usual, I received my daily schedule in the early morning on Wednesday. Seeing an appointment at 9:00 a.m., I felt anxious and rushed for it given the limited time that morning to get ready. The nurse who took my vital signs even said I had high blood pressure; so high she couldn’t let me leave. She had me take a ten minute break before heading to my appointment to calm me down. In that moment, I realized something important: I couldn’t stress out over being on-time and perfect about everything, especially things that were beyond my control. Since then, I’ve done my best to follow that way of thinking, and it’s kept me steady.

Once at my physiotherapist appointment, I told her I regularly did cardio boxing before my operation. She had me wait for a few moments, and left to get some gloves and pads. It was thrilling to have the gloves on again. While I sat, she had me throw a few punches at the pads she was holding; jabs and crosses, then hooks, and finally uppercuts. My left still had it; my right definitely needed work.

After I completed my exercise, she performed hot/cold and sharp/soft sensory tests on me. My arm’s reaction speed was up to par, but there was a slight delay in my foot and leg’s reaction. I still passed the tests without issue. We finished up by walking another few laps around the track. Notably, this was the first time I managed to walk without constantly staring at my feet.

Later that morning, I had my first appointment with my occupational therapist, Charles. We had an extended discussion over my story, lifestyle, hobbies, etc. He wanted to get an understanding of what my life was before cancer. He also wanted to know what my immediate goals were. Most importantly, I wanted to be able to go to the bathroom alone. Additionally, I was hoping to stay with my in-laws over the weekend. I shared pictures of their condo and measurements for wheelchair accessibility. After reviewing everything, he didn’t seem worried about those living arrangements. He finished the session with a few more assessment tests for my arm and wheelchair mobility. Before leaving, he provided me with a few shoulder exercises to practice.

That afternoon, I returned to the Neuro. I spent the latter half of the day bouncing between consultations with Veronika. We started with radiation oncology. The resident fellow showed us a summary of the radiation treatment plan as well as details about the tumor. He explained how I would have twenty sessions over four weeks, as well as the potential side-effects, most distressingly difficulty with concentration and short- and long-term memory retention. Shortly afterwards, the attending radio-oncologist, Dr. Abdulkarim, joined us. He told me the first step to start radiation therapy would be to get my mask made. He couldn’t have it made for me before all 32 staples on my head were removed, however. He even joked about taking them out then and there just to get things moving! As he left, he handed me a card in case I needed him for anything.

Next, we met with the oncologist for chemotherapy, Dr. Owen. He told me I would be starting next week with orally administered temozolomide. I would be taking one dose a day for six weeks daily, followed by six 28-day cycles where I would be taking one dose daily for five days before taking a break until the next cycle. He also went into various lifestyle changes I would have to make. Among others, I would have to restrict my diet quite a bit. No raw meats, no raw fish, no unpasteurized dairy, no alcohol... The list went on and on. “So he’s basically on a pregnant lady’s diet,” Veronika remarked when Dr. Owen listed those restrictions. He chuckled, “Yeah, that’s a good rule of thumb!” Speaking of pregnancy, fertility was also a main topic for him as he mentioned that some of the side effects could impact family planning. He had us put on a list for an appointment with a fertility clinic. I needed to make a deposit before I could get started with chemotherapy.

Finally, we met with the oncology nurse, Alex. She was the one who managed to answer the more granular questions we had about chemotherapy. She provided us with information on the treatment course and what to expect; how to handle the pills (which are toxic even to the touch), what major symptoms to watch out for, and other precautions to take. With every appointment concluded, I returned to the rehabilitation centre. I spent the rest of the evening relaxing with Veronika.

The following day, I met with my occupational therapist just before 9:00 a.m. on my floor to work on mobility and quality of life. We tried out techniques that would allow me to go to the bathroom on my own, for one. He suggested I try changing how I maintained balance. Instinctively, I would use my left hand to stabilize myself, but I wasn’t able to pull my pants up and down with my right. Holding myself up with my right hand would allow me to use my better side for the more complicated movements. Using the same setup, he also encouraged me to try standing while cleaning myself at the sink. We finished the session with him providing me with a wrist brace and clearing me to go home for the weekend. Freedom (ish), finally! After five weeks, I would at last spend a night not in a hospital bed.

After therapy, a nurse came to remove half of my staples. For safety reasons, they couldn’t be taken out all at once. Let me tell you, it’s nothing like having stitches removed. It felt like my hair was being pulled out, but without any kind of pain. So weird. At least it didn’t take long. Once that was over, I met up with my in-laws, who brought me lunch. They wheeled me outdoors where we ate homemade egg salad sandwiches, and caught up. They were especially glad to know I would be going back with them on Friday.

My afternoon appointment was with my physiotherapist. We started by going up a few stairs, which I managed to do without difficulty by supporting myself with the railings. Afterwards, I practiced balance by stepping on a platform with my left leg first, putting all my weight on my weaker right. It was necessary to learn how to shift onto my right to move around with less support. As in the previous sessions, most of our time was spent walking. This time, I had a walking stick, which provided less support than the cane I used last time. Our last exercise was a bit of cardiovascular activity; a pedaling motion with my legs. She handed me a cane, a foot brace and a shoe horn for the weekend before leaving.

I got ready to go that evening. Just like I did at the Neuro, I wrote up a packing list that I would diligently check off the following morning. This time, I managed to get everything ready on my own.

The final preparations for my temporary return to the outside world were completed Friday morning. My occupational therapist had me try to pivot into a car using my left arm and provided me with some more exercises to practice; the nurse removed the last of my staples and gave me my medication for the weekend. I left for home around 11:30 a.m. I could finally enjoy a peaceful weekend with family. Or so I thought…

- Jasper

The night following my resection on Thursday, April 17th, Veronika broke down. Very understandable. I'm almost surprised it didn't happen earlier. She expected my leg to be gone (not literally). My right arm barely moving, though? THAT freaked her out. She's done so much for me, my mental state and fortitude would not be where it is today without her. She has been my compass throughout all this. My true partner. Even with me being me, she truly has adapted to this unique situation. So, it's my duty and responsibility to make sure I can regain as much independence as I can so we can go back to living our “normal lives.” I tried so hard to comfort her and told her everything was going to be okay. But the truth is, even I didn't know. I definitely wasn't expecting brain cancer, yet here I was. I hated seeing her in this state, I just wanted to reassure her. Give her some normalcy. I didn’t let my paralysis hold me back. Quite the opposite, it kicked me into high gear and motivated me on my road to recovery.

With the long weekend ahead, this gave me time to understand my new reality. I was learning to rediscover my muscles and my body. One day at a time. I was also on steroids which kept me quite wired, even more so as someone who doesn't need much sleep in the first place. It didn't help that I had to sleep in a different position than usual to keep my head elevated. So, I thought to myself: “If I'm awake, I may as well do something productive with my time.” I exercised to tire my body out in the hopes of falling asleep. And it worked. Leg raises, knee extensions; holding those positions for five, ten, twenty seconds, until I couldn’t anymore. Then, my biceps: squeezing it, trying to lift it, seeing how far I could hold it. Holding my right wrist with my left hand, I would practice touching my thumb to each of my fingers one after the other. Again. Faster. All those little movements, just learning to rediscover my body. Every day I would see improvements. They were small, but each additional movement was so gratifying. I felt true joy, practically grinning each time I exercised. At the same time, I felt exhausted from the intensity. Still, I wouldn't let that hold me down. This was my new routine.

Tuesday came around faster than we realized. It was a very busy day.

I started by getting up at 7:00 a.m. I propped myself up in bed, changed my socks, toiletries ready by my side, and pressed the call bell for assistance to pivot into a chair. I explained that I wanted to go to the bathroom, and that I would be sitting there for about half an hour or so to do my business and clean up. I awkwardly opened my toothpaste tube, brushed my teeth and flossed. I then used soapy washcloths to clean my body as best as I could, dried myself, and put on my hospital gown. I pulled the call bell for assistance to bring me back to my room. This was my new morning routine. I did everything I could on my own, keeping as much independence as possible. I thought to myself: “I might not be able to walk, but at least I have my left arm.” Once back in my room around 7:30 a.m., I decided to spend the day sitting in a chair, having been bed bound for the weekend. I did not go back to bed until 7:30 p.m. Aside from when I had some physiotherapy, I spent the entire day sitting up. A win in my book.

Like I said, though, it was a very busy day. My first visitors were my in-laws, Carole and Shaw. They arrived around 9:00 a.m. They've been here every other day bringing me breakfast and other little goodies to keep my spirits up. It’s nice to keep things light and have fun conversations with them, while exchanging a bit of dark humor with my mother-in-law.

Around 10:00 a.m., Dr. Albeloushi came in to check on my progress. I showed him what I could do with my right hand, arm and leg. I also told him my pain was pretty much non-existent. I managed to get along with Tylenol, rest, hydration, staying well fed and, above all, keeping my mind occupied. While I initially took morphine after my operation, I knew it would be best to wean off it ASAP, which I did in four days. The doctor was pleased on all fronts. He continued by telling me the doctors would be meeting tomorrow to review my case and pathology report, and to develop a recovery game plan for me. He also mentioned that my oncology consult would probably take place the following week. “Good! Next steps are moving quickly,” I thought. I asked him if I still had to sleep at an angle on my back. He said, “No. Sleep however you'd like.” Great, another win.

He finished with a statement that caught me off-guard: “You'll be moved to a live-in rehab facility, full-time.” Up until that moment, I thought I would be going home in a few days. Still, I was pleased to know that my care would continue and that this would give me the best possible chance to recover my independence. At the rehabilitation centre, I would be following an intense program with physio and occupational therapy five days a week. I thought, “Good, that's exactly what I need.” They would also take care of any transport necessary for my offsite medical appointments. Additionally, there would be onsite nurses to manage my medication.

In that moment, I also felt a sense of relief. I had assumed I would be discharged and sent straight home. Veronika and I live on the top floor of a three-story walk-up building, and we had been scrambling to find an alternative. We’d ultimately decided to temporarily move in with her parents, whose condo building has an elevator. I was relieved — not just for myself, but also for Veronika and her parents — knowing they wouldn’t have to shoulder the full burden of this situation. It also meant we could delay the immediate purchase and installation of all the medical and accessibility equipment that I’d need.

After Dr. Albeloushi left, the nurse liaison came to my room around 10:30 a.m. She gathered and verified my personal information for my application to the rehab centres. She also walked us through the application process and logistics as this was all foreign to us. She explained that I would be going to one of three sites available based on my postal code, and mentioned that there were no guarantees of a private room unfortunately. She said she would call back regarding the oncology consult to confirm the date and time, for which she called back an hour or so later to confirm it was the following Wednesday, at 1:00 p.m.

Within 30 minutes of the nurse liaison leaving us, the physiotherapists arrived. Teri and Oliver. They quickly got me on my feet and got to work. It felt satisfying. We practiced standing, walking, hip raises, foot placement, and pivots. They used a mirror to help me visualize my limbs as well as my knees’ and feet’s position. Keep in mind I am still partially paralysed in my right foot and right arm. They also gave me a sling for my right arm so I wouldn’t feel its weight pulling on my shoulder. Additionally, Oliver taught Veronika how to spot me and showed me how to ensure my knee was always locked when standing. This was confusing because I’d never learnt or even thought about locking my knees. The workout was very tiring, but at least I got a good sweat in.

As the physiotherapists finished, the social worker, Melissa, also came by to speak to me. She mentioned that the paperwork for the rehab centre was already in motion and that everything was going well on that front.

Sharon, my nurse for the day, came by as she normally did to check in on me. I asked her about how I could vote for the election. She said she would look into it for me. About an hour later, she came back with positive news: “I managed to flag down representatives from Elections Canada who were already on the floor. They'll come see you shortly.” Success! When they came to see me, I filled out my ballot and put it in the box. Even brain cancer couldn't stop me from performing my civic duty.

I took it easy in my chair for the rest of the day. I saw my childhood friend Nathaniel for dinner. He brought one of my favourites, Dobe & Andy.

That night, on the doctor’s orders, I laid down on my stomach for the first time in twelve nights. The relief was instantaneous. Up until that point, I had been told to lay on my back and remain at a minimum 30° incline. As a side sleeper who lays flat, to call it "uncomfortable" would be an understatement. Still, I was doing what I needed to for my recovery. Veronika applied some pressure to crack my back. SUCH a relief.

Wednesday was just as busy. I woke up a little later, but followed the same morning routine. After a few hours of sitting, I had Veronika help me exercise, applying what Oliver had shown her. Together, we practiced standing and locking my knee. It felt very unusual, but I had to learn. I had to focus intensely on this, even forgetting to breathe at times. About an hour later, Oliver showed up and we practiced walking again. I walked for about 50 steps. I don't know who sweated more, Oliver or myself. Despite the short distance, I felt overwhelmingly prideful in my efforts.

After another jam-packed day, I wanted to release some pressure from my back again. I also needed to give my hips and lower back a rest from constantly sitting in my uncomfortably rigid chair and lying down in my hospital bed. Let’s just say neither option was ideal for decompressing. Thus, I spent some time resting on my stomach on my bed. Much more enjoyable that way.

Dr. Petrecca knocked at the door and walked in. He laughed. This was the first time he’d ever seen a patient lying on their stomach. Sheepishly, I tried to shuffle around so I could face him for our conversation, but he told me not to move for him. After exchanging a few pleasantries, he confirmed that my post-op MRI came back squeaky clean; not even an edema. He was still very content with my leg’s mobility and was confident that my arm would come back based on the MRI. “Recovery is exponential”, he said, motioning a curve with his hand. I asked if the pathology report results were in. He confirmed that this was the most aggressive type of glioblastoma. With a sigh, he reconfirmed that performing the surgery was the right call. The one silver lining in all this.

Because the glioblastoma was so aggressive, I asked about resurgence and what my options were if and when the time came. He shook his head and told us that he didn't even want to address or to think about resurgence. He told me he wanted us to focus on the immediate treatment and recovery plans that oncology had in store for me. When he asked if I had a consult on the books yet, he was disappointed to hear that it was booked for next week. At least things are moving forward though. The follow-up finished with him sharing that my next MRI scans would be two months after chemotherapy & radiation were complete. Before leaving, he said he would set that up for me.

As I said before, I’m someone who’s already functional on little sleep and when you add corticosteroids to the mix, and with all that happened Tuesday and Wednesday, my brain was wired. I slept roughly six hours over those two days. Everyone has their limits, and my body’s were well exceeded. My exhaustion finally caught up to me on Thursday.

That morning, my in-laws came to visit me around 9:00 a.m. Due to lack of sleep, I was already feeling drained and irritable. I tried to push through, but I had trouble concentrating. I was getting frustrated easily, I wasn't cracking jokes and couldn't engage in conversation. Despite all this, they remained patient and understanding with me. I see the love they have for me and I truly appreciate them. I love them too.

They stayed for about an hour. After they left, I tried to get through my tiredness by continuing to sit in my chair, closing my eyes and meditating. It did not work one bit. I was getting more irritable, tired and uncomfortable by the minute. I tried to tough it out for another hour until a nurse walked in and asked if I needed anything. I said, “Yes, can you please help me into bed?” I explained the steps of transferring me from the chair into my bed. I’d gotten somewhat used to explaining the necessary movements and support I needed to get me from one place to the other.

Once back in bed, I tried to shut my brain off. I was still pretty stimulated, but boy did it feel good to lie down. I put my earbuds on and started listening to crashing wave sounds just to drown out the noise around me. I passed out in minutes. My body really needed that.

About an hour later, the nurse liaison walked in and said that I would have a bed the following morning at 9:30 a.m. at the Villa Medica Rehabilitation Centre. That perked me right up. It was time to plan for my move over the next few hours. I immediately called Veronika and my dad and we began coordinating.

Thursday night, Veronika and I were in “get shit done” mode. Naturally, we created a spreadsheet and listed off as much as we could, going through what needed to be done immediately and what could be finished over the weekend. We made sure the room was fully packed that night in preparation for moving day. We also reviewed the patient booklet guide from the rehab centre. It was important to know what to expect.

That night, I actually slept almost five hours; the most I’d had in a while. I was up at 6:00 a.m. on Friday, and I carried on with the same routine that had been working for me. There was one difference though: this was the first time I wore my own clothes since April 4th. Finally, no more hospital gowns. I mostly managed to get dressed on my own, but I needed some help finishing up. I was still weak in my right arm, after all. I called over the patient attendant to help put on my right shoe and tie my laces, for which I still lacked the dexterity for the time being. They helped me stand and pull my bottoms up since I needed to hold the grab bar with my left hand. They then wheeled me back to my room.

For breakfast, I had everything ready to go in a lunchbox. This time, I asked the patient attendant to bring the lunchbox and a spoon. I actually managed to open and eat everything by myself, including a mason jar of overnight oats and a box of berries. Big win! One step closer to independence. It felt greatly motivating.

Veronika arrived just before 8:00 a.m. with some pastries from Mollo, my favorite bakery up our street. She also brought coffee from Tim Horton's as a small “Thank You” for everything the care team had done for me. The contrast between my treatment and my mother’s still shocks me. I was ready to leave the hospital by 8:15 a.m. I sat there, taking in a final view of the room I’d stayed in for the last 15 days.

My transport arrived around 9:30 a.m. It was refreshing to finally go outside, see the streets and breathe a bit of that crisp Montreal air. I arrived at my new “home” a few minutes later, ready to start my rehabilitation.

Jasper

I’ve had a very busy, yet productive week. All is trending well.

Pain has been virtually non-existent; I am only taking Tylenol preventatively. Appetite is still in full swing - are you even surprised? Everyday, I am seeing improvement in my mobility, which is a good sign according to the doctors, nurses and onsite physios. I’ve had a lot of follow ups with them.

The biggest update of them all: I will be moving to a rehabilitation centre tomorrow, April 25th, around 9:30am. While there, I will be going through intensive physio and occupational therapy on a full-time basis. My ultimate goal is to walk out of there with my independence. Furthermore, during my stay, I will also be going through chemo and radiation therapy. My oncology consult is next Wednesday April 30th.

I plan on sharing a more detailed update of my post-op experience over this coming weekend.

Again, thank you to everyone who has been so kind and supportive. It means the world to me to have such a strong community around me. It has definitely contributed to my state of mind and overall morale.

PS: I finally found out my blood type.

After my consult with Dr. Petrecca on Tuesday, April 8th, I knew I was getting surgery Thursday morning. At 7:30 a.m. In 39 hours. And so the prep work began. Wednesday was a long day; I just counted down the hours all morning. Dr. Albeloushi, the primary resident on my care team, came to see me in the early afternoon to explain the procedure and answer my questions. He was very composed and took the time that I needed.

Here’s how our exchange went. I asked: “How long will the operation be?” He responded: “No complications, two to two and a half hours.” “Can you walk me through the operation at a high level?” “Absolutely. We’ll make an incision at the top of your head and remove a part of your skull. This will be the same opening used for your resection next week. Once inside, we’ll go in to remove a piece of the tissue for the biopsy. You will be under during the entire operation.” “Should I expect any side effects post-op?” “It’s possible, but for the biopsy we do not anticipate much difference. The resection will be different, but we will assess at that point.” “How long until we get the pathology report?” “Typically it takes five to seven days, but it should not impact the resection. We’ll try and get it quickly, but unfortunately it could take a bit longer than we’d like.” “What’s my blood type?” “I’ll have to look in your file, let me get back to you.” “Any dietary restrictions?” “No, just nothing after midnight.” “Thank God,” I thought to myself on that one!

I might have looked calm, but so much was going through my head. Right before leaving, Dr. Albeloushi asked if there was anything else he could answer. “Yes. much, much more,” I thought to myself. Still so many questions, so many unknowns in my head… I was about to get brain surgery after all. Instead, I said flatly that there was nothing else and thanked him for his time. He left.

A few more hours went by, and this time my nurse, Marie-Sol, came in. Very apologetically, she explained she had to draw blood from me. “How many vials,” I asked. “6… I’m so sorry.” “No worries, just talk me through the process.” Again, I asked for my blood type. She said she’d try and get back to me. No return unfortunately.

It was 6:00 p.m. My anxiety kept rising. But, I was still committed. No going back now. Veronika clearly saw it in my face though (no hiding anything from her) and flagged down another nurse, Colleen, who spoke with me. I asked her if there was anything else I needed to do. She said yes and walked through the exact steps I needed to follow. Anxiety down a smidge. “Shower before going to bed, change all your bed linens, no food or liquids after midnight, be up around an hour before to use antiseptic wipes from neck to toes.” Good, I had my checklist now. However, sleep didn't come easy… I slept maybe three hours that night, awake as of 4:00 a.m. Just a few more hours to go.

Veronika showed up a bit before 6:00 a.m. and helped me with the wipes. That was an interesting process to say the least… Let's just say after that we knew TRUE intimacy. Once wiped down, I sat on the side of the bed waiting for my transport to the operating room. A few moments later, a staff member, Freddy, showed up with a gurney to wheel me to the OR. As we made our way over, we exchanged pleasantries. His friendly demeanor was very soothing. We arrived at a small surgical holding area and stayed together for a few more moments. He left me alone, and in walked the resident anesthesiologist.

He introduced himself and started asking me what I assumed to be standard questions: “Have you ever been under general anesthesia?” “No.” “How often do you drink?” “I usually have about seven to ten drinks a week, typically in a social setting.” “Do you take any other drugs?” “Yes, I occasionally take THC and CBD. Years ago I did other stuff as well, but nothing recently.” “Do you smoke?” “Yes, I vape about the equivalent of a pack of cigarettes annually.” “When was the last time you ate?” “Before midnight. I made sure to have a steak.” He chuckled. “Do you know your weight?” “Approximately 225 pounds, but I'm assuming it's probably gone down since I got here.” He also asked for my height, to which I responded six feet. I said: “Do you need my BMI?” “Don't worry, we can figure it out with those two numbers.” He left.

Next came the surgical nurse. She checked the standard stuff: my bracelet, my name and date of birth. She asked if I had any tattoos or piercings (I have a tattoo) and if I'd eaten anything recently, all of which was no problem. Finally, Dr. Petrecca and Dr. Albeloushi walked in. Dr. Petrecca asked in a very calming manner the same first question he always asked: “How's the leg?” “Same old, same old,” I told him. He then asked how I was doing. I said I was tired and didn’t sleep much. I was a bit rambly, but he didn’t pay too much attention to that. He pulled out some paperwork and asked for my signature in two spots. He said tersely: “surgery, anesthesia”. I signed quickly but shakily. Dr. Albeloushi stood to the side and watched the interaction. They then left and went into the OR. A few moments later, Freddy came back and I was wheeled into the OR on the gurney.

I was placed beside the surgical table and asked to transfer over onto it. The anesthesiologist said: “I'm now connecting you to the IV.” “No problem.” After that, an oxygen mask was placed on my face. I was told to take deep breaths and that it would be hard at first. As I took those deep breaths, I kept asking: “What's my blood type?” Their response was: “Okay, stop talking now,” effectively telling me to shut the fuck up and that it was not the time. The last thing I remembered was Dr. Petrecca asking me if I was cold. I said yes, and he brought this big, warm blanket and placed it on my chest. I passed out within seconds and don’t remember anything after that.

And so went my biopsy. I can't recall if I was dreaming or in a trance; I was just out of it. However, it felt very peaceful and restful. At one point, I heard my name: “Okay, Jasper. Time to wake up.” Suddenly, I was very much alert and I was like, “Oh! Time to wake up,” as if I’d had a deep, deep nap. I ended up waking up in the recovery room on a gurney, gradually being fed ice chips. I was parched. I spent the next several hours there, very alert and very awake. There was this older couple that was sharing the area with me. We started up a conversation that lasted for a good hour or two. It was a relief to know that I still had my marbles, and that it wasn’t difficult to concentrate on a longer conversation at the time. Veronika kept me company during all of this. However, I had an additional piece of medical equipment: a Foley catheter. I hoped that would be the last time I would have to use one of those. Alas, there was a second surgery coming so I already knew it was going to happen again. Great... After a few hours, I was finally wheeled off to a new room, room 438-G.

Room 438-G was a bit smaller than my previous room, but at least I had my own bed and privacy. The patient attendant who wheeled me in asked if I could slide from the gurney to the bed. I responded, “Yes, but you'll have to give me slack on my catheter…” She was practically holding it above her head. Not a fun time… About an hour went by, and two people came into my room to say I needed to be on my way for a head CT scan. I assumed it was standard practice after having brain surgery, so I left to get my scan. But this time, I took no chances and firmly held the catheter close to me and made sure it was not getting tugged. When I got back, they took it out. Thank God. Again, really not a pleasant feeling, but I was relieved it was out after only a few hours. Next, the nurse said: “Let's try walking to the bathroom.” So, I got up. I felt woozy, but I was able to stand on my feet. I was still able to walk despite the limp. Good, I thought to myself. I got there and sat down to pee. GOOD. After that, I slowly wound down for the rest of the day. “OK. One down, one to go.” I still had one question unanswered though: what's my damn blood type? Well, it turns out they only test what you’re compatible with, so there was no way of me finding out.

Over the next few days, I worked on building my strength and making sure my body was ready for the second surgery. I still felt relatively the same post-biopsy: good appetite, minimal to no pain, and I actually scored a higher physio score than my pre-op one. All in all, my recovery was going well. This gave me a lot more confidence for next Thursday.

On Friday post-biopsy, Dr. Petrecca came by for a brief visit. He confirmed that I would be needing the resection, as what he saw was most likely a glioblastoma. I went through the same motions once more, but this time I knew what to expect. I was prepared. Tuesday rolled around, and Dr. Albeloushi came for a quick check on me. Our conversation was a bit more brief, but still very appreciated. I asked: “How long will this operation last?” “Approximately the same amount of time.” “What are my anticipated side effects?” “Definitely more weakness in your leg and potentially elsewhere.” I had a few more questions, but that was the gist of it. Wednesday afternoon, I went for an MRI. Second one, so I knew the drill this time too. That evening, I was told to not eat after midnight, shower the night before the surgery, change all my linens, and clean myself with antiseptic wipes in the morning. All routine for me and what I was expecting at this point.

That night, I decided that we would order more steaks for dinner. Funny enough, our dinner had a bit of foreshadowing to it. My brother and I ate these wonderful New York strips, perfectly cooked with no issues with them. Veronika ordered a filet mignon. It looked fine on the outside, but something was wrong on the inside. The center had turned to a pasty mush. The last thing you would expect in a beautiful piece of meat. That was a pretty damn clear reflection of what was in my brain. After dinner, I decided to rest for the evening and tried to get some shut-eye.

Unfortunately, sleep didn't come easily to me once again. This time, it was from all the anticipation. I slept maybe three hours that night, and was up at 4:00 a.m. again. I distracted myself with my phone, chatting with relatives across the planet for a bit. Soon, 6:00 a.m. rolled around and Veronika was back to help me out with the antiseptic wipes, again. This time though, I was calm and ready. Impatient, even! By 7:00 a.m., I was practically counting down the minutes. During those last few moments, I thought to myself: “I hope Freddy's the one to bring me.” A little after 7:20 am, my gurney finally arrived. Disappointingly, it wasn’t Freddy. Not to worry though, I knew the drill this time. I was wheeled to the same waiting room, but this time I was left alone for about five minutes. While I waited, I took in whatever sights I could. I stared at the halogen lights on the ceiling. Squinting a bit because I didn't have my glasses, I noticed these white bubbles moving through the lights slowly. It reminded me of blood moving through a vein. It was mesmerizing.

The anesthesiologist then walked in. Different guy this time. We made a bit of small talk and even started to banter and joke a bit. He asked me one question: “Were you comfortable last time?” I responded: “Do exactly what you did last time, it was perfect.” He smiled. I told him that my weight was now 215 pounds. He noted that down right away. He noticed in my file that I am a CPA (Chartered Professional Accountant). He then asked if all my clients were taken care of, to which I replied that I have none since I work at a company department. We discussed a bit about taxes after that. It felt good to have a brief moment of normality. I also thought to myself that the CPA order needed to up their awareness campaigns; we don't just do taxes!

Shortly after, Dr. Petrecca and Dr. Albeloushi walked in. Dr. Petrecca once again asked how I was feeling in a very reassuring and composed tone. This time my response was that I felt peaceful, that I was ready to do this. It was just another day in the OR. He smiled and we talked a little bit more lightly this time. Importantly, he also mentioned that getting the surgery that day was the right call. In the twelve short days between my MRIs, my tumor had grown significantly. Had I waited another four weeks, I would have been guaranteed to lose mobility in my right arm and not just my leg. I was glad I made the call then and that treatment was going in the right direction. He then handed over the surgical and anesthesia consent forms to me. I signed them immediately. Right after signing, I told him, smiling: “If you see any opportunity in the moment, you have my full consent to take any action that you deem necessary.” He laughed and said “Don’t worry, this isn't a medical drama. We plan for these and we know exactly what we are going to take.” I laughed back and said, “Perfect.” He then headed into the OR.

The OR nurse came in and asked me a few technical questions. At the same time, a patient attendant asked if I was able to walk to the OR table. I said I could, so he put surgical scrub slippers on me. I got up, took a few steps into the OR and got on the table. I was expecting these to be my last steps for a while, so I enjoyed what I could. Once on the table, I was covered in these warm air pads to control my body temperature, and they started to set me up for the operation. They connected me up to an IV and the anesthesiologist explained to me that he was beginning the injections. As this went on, Dr. Petrecca was chit-chatting with me, joking about how quickly my hair grew back, while also commanding the room, much like a conductor. It was clear that he was the leader in this room, and I felt very confident with my brain in his hands. After I laid down on the table, he instructed the team to move it a few more inches closer to the anesthesiologist. Next thing you know, the oxygen mask was on my face. I still didn’t know my blood type, but I knew better than to ask this time. I took a few deep breaths as the anesthesiologist told me to keep doing what I was doing. He mentioned I had great lung capacity. After a few deep breaths, they took the mask off and I started to feel the anesthesia coursing through my veins, the taste of novocaine in my mouth. Giddy, I started to smile uncontrollably. I saw the anesthesiologist reading from a piece of paper explaining what had been put into my system. I saw Dr. Petrecca listening intently, his game face was now on. He was the warrior that would be fighting for me over the next few hours. I fell asleep within a moment, feeling very relaxed.

This time, I woke up in the OR. I was alert, yet blissful. Still as well-rested as last time. I was wheeled off to the same recovery room. I don’t fully remember the journey there as I was still pretty loopy. As I got there, I started to feel sharper, more awake. I was asked the standard questions: “What’s your name?” “Jasper Colin Chander Fyson.” “What's your date of birth?” “April 3rd, 1992.” “Where are you?” Without skipping a beat, I responded: “3801 rue University, in the recovery room on the 4th floor; and I believe I am facing West (I was actually facing North, whoops).” The nurse chuckled, “The Neuro would have been just fine.” He said I would be in the recovery room for a little while, but that if there was anything I needed, to let him know. I asked if he could contact my wife and he said: “No problem, how can I reach her?” I gave him her phone number. She was at my side within minutes.

I stayed in the room from 11:30 a.m. to 4:00 p.m., after which I was sent to get another head CT scan. Once again, I had the pleasure of a catheter inside me. I was wheeled back to room 438-G, where my nurse greeted me. Other nurses who recognized me came to say hello and check in on me too. I’m amazed how kind the staff has been to me during my stay here.

Dr. Petrecca also came to see me after my surgery to check in on how I was doing post-op. He said the surgery went well. He explained that they had performed a supramaximal resection as initially planned. This involved a total removal of the tumor and a surrounding perimeter of healthy tissue upwards of 1 cm in some areas to ensure maximum chances of no regrowth. He said that if I were to get an MRI, it would come out clean. He then checked the strength in my right arm and leg. As expected, my lower leg did not see any improvement. However, there was a minor surprise when Dr. Petrecca asked me to move my leg in a certain way that engaged my quadriceps, which I managed to do with little difficulty. He said that it was great for walking. As for my right arm, I had some unexpected weakness, but I’ve been learning to live with it. I can’t lift or bend my arm for now, but the doctors seemed confident that with some time, rest and physiotherapy it will be almost back to normal.

Over the weekend, I took the time to focus on my body and get in tune with my new reality. It was a long weekend after all, so I had time to adapt. I knew next Tuesday would be a big day. And I still don’t know my damn blood type.

Jasper

I’d just like to take a moment to thank everyone for your messages, well wishes and love received throughout this entire journey. I’ve been trying to stay off my phone and focus on my new reality. Rest assured, everything has been going well.

After 3 long weeks, it was nice to finally be able to go outside and sunbathe a little in the crisp cool April air.

I will share a more in depth update about my surgeries, hopefully tomorrow, by Tuesday latest. I’ve really enjoyed documenting and sharing my journey so far with you all. I hope to keep this going on a regular basis. More to come.

Love,
Jasper

Jasper came out of surgery around 11:30 this morning and has been recovering well. After feeding him a few ice chips, he quickly asked for real food, so I knew he was the Jasper we all know and love. He got moved back to his room after a quick head CT around 4pm. We have been taking it easy since.

More to come on his recovery and mobility progress. We are hopeful and keeping up with the positive vibes.

With love,
Veronika & Jasper

I like to consider myself as someone who is relatively active in life. I won’t go run a marathon, but I can hold my own on a bike or in a cardio workout! Unfortunately, I’m also someone who likes to push his limits - if it hurts, push through. If it still hurts, keep pushing until you really can’t. Not the best idea and I don’t recommend it… But, this is me. So, after an intense leg workout at my boxing gym on March 25th, I started noticing weakness in my right leg. I typically shake my leg while at my desk, but this time I wasn’t able to keep a constant pace; it would just stop on its own. I thought, “that’s odd, I guess I pulled something”. Solution? Go for another workout on March 26th. During that workout though, I knew I pushed myself too much and realized that now was the time to rest my leg, sorta.

On March 27th, I hosted my friend Dylan for dinner. We met up downtown after work and decided to walk back from the metro station to my place (~1.5km). I was limping, but still on my feet (so much for resting right?). After dinner, I offered to drive him home. I figured, “it’s not a far drive and we can spend a bit more time together catching up.” However, that was probably one of the most stressful drives of my life. The moment we hit the road, I immediately had trouble controlling the pedals with my right foot. I ended up having to use my right arm to apply pressure on my leg to properly engage the pedals. Thankfully, I got home safe. But, I knew something was more serious with my leg. More importantly, I could absolutely not get behind the wheel again until this was dealt with. So I limped my way back up the stairs at home, and immediately booked a physiotherapist appointment to get my leg looked at. The first available appointment was for the following Monday, on March 31st.

Friday rolled around and at this point I was barely able to control my foot. It took me almost three minutes just to put my shoes on. I went out to walk my dog Arlo and it was a STRUGGLE. No pain, no gain though, right? While I was walking sir-sniffs-a-lot, I was thinking: “Fuck, I’m gonna have to do this all weekend too because my better half is in Dublin.” So, being the resourceful person I am, I reached out for help. Thankfully, my brother was able to come and spend all weekend assisting me with Arlo. I spent most of it on the couch and I introduced him to the Witcher 3. As the days progressed, I was noticing less and less control in my leg at this point - I couldn’t wiggle my toes, move my ankle or even flex my calf. At the time, I was positive it was a pinched nerve.

Monday finally came, but my physio appointment wasn’t until 2:30 pm. My brother was back home too, so once again I had to walk the dog. At this point I had total foot drop and took at least five minutes to put my shoe on. That damn walk also took twice as long and a lot of effort. As I limped along, I was thinking: “Hmm, the physio is about a ten-minute walk away. Better give myself thirty.” I was also still convinced this was a pinched nerve and the physio would manage a very specific stretch and that it would pop right back. 2:00 pm rolled around and I started making my way out the door. I made it there by 2:25 pm. Not bad! As I walked in, I saw the physio finishing up with someone else, giving me a few moments of rest for my tired leg.

A few moments passed and I introduced myself to him and he invited me over for the consult. I explained my symptoms, showed him my leg. He took a quick look and within five minutes he told me there was nothing he could do. Instead, he said the last thing I wanted to hear: “You need to go to the hospital and get a scan done. Today.” He told me I should not drive (duh), and he directed me to the McGill University Health Centre, Glen Site ER. He also made sure to give me a note that explained the situation (yay, proof!). So, even though I was dreading the thought of having to spend hours in an ER waiting room, I knew this was the only path to get it fixed. I took his recommendation seriously and prepared myself mentally. And I am glad I did. As I walked out the door, I called my in-laws to help me get to the ER and come take the dog.

I got dropped off around 4:00 pm and so began my journey at the hospital. I got triaged pretty quickly. It took about half an hour, so I figured it wouldn’t take too long to be seen, right? Wrong! I waited until 5:30 am just to get seen by a nurse for a first visit. I was tired, hungry, uncomfortable and irritable. However, I knew this is where I needed to be to get this solved. So I pushed through and stayed despite feeling miserable. And once again, am I glad I did. It took another three hours to finally get seen by the doctor. I got the call on the PA system to go to room #10. Inside, a nurse asked me to change into a gown and told me the doctor would be right with me. She left immediately. Getting changed was another struggle… ever try taking your socks, pants and shoes off with a bum leg? But it had to be done. I managed to get changed and sat on the stretcher in the room for a few minutes and the doctor finally walked in.

I explained my symptoms to him and within a few minutes he knew they were signs of a more serious underlying condition. He ended up telling me that this appeared to impact at least two or three nerves. He immediately ordered blood work and a head CT scan. I was thinking, “That's odd, my foot is the issue no? He's the doctor though, so he knows best and probably just wants to rule out the worst.” Not thinking much of it, I complied. After the scan, I went back and waited another 45 minutes and then got called for another set of scans, this time a chest X-ray. The technician had the same thought as I did: “Why is he checking your chest, isn't your foot the issue?” I shrugged at her. Doctor’s orders, they knew. Well, this one doctor really knew.

Within 15 minutes of that scan, I got called back to the room where the same ER doctor, Dr. Marc Beique was waiting for me. I vividly remember him sitting against the sink and telling me in a calming but matter of factual voice, “There’s no easy way to say this: we’ve found a lesion in your head and we are admitting you now. I also checked your chest, but thankfully nothing was found.” I had no reason to doubt him and I could see the seriousness in his face. I was actually very glad he did his due diligence and found something so quickly. I was surprisingly calm at that moment and asked him if he knew more. My mind immediately went to cancer. He responded that more tests were required, but that I would be getting the care I needed.

I got transferred to a more private area in the ER and this is where I saw my first familiar face - Dr. Edward Harvey. I couldn’t hold it in anymore. The tears started coming down my cheeks and words were just not coming out. I breathed through it though, and processed it as I spoke with him. He talked me through my situation very calmly and was very comforting about it all. By the way, he was also the credit for my motto, which I have taken to heart. A few minutes later I was told a gurney was available for me in the hall. I was still in tears but speaking had become easier. Halfway to the gurney, I realized in my messy state of mind that I forgot my phone, so Dr. Harvey went back to get it for me.

I finally made it to my gurney and so began my second chapter at the hospital - waiting for a transfer to the Montreal Neurological Institute-Hospital, aka the Neuro. I ended up staying in a gurney in the hall for four days. During that time, many people visited me, including my father, my brother, my in-laws and of course my wonderful wife, Veronika. One of those days was even my birthday, so my in-laws brought balloons. Every person passing by wished me happy birthday, which was pretty nice all things considered. I got a few birthday wishes too, but had decided on not sharing my news too much. It was important to celebrate the good times whenever and wherever you could. I also kept myself active during that time, going on walks and exercising by my bed to maintain what mobility I had in my leg. While there wasn’t much privacy in the hallway, I knew this is what I had to do to get into one of the world’s top neurological hospitals. I was finally admitted on Friday afternoon.

I got to the Neuro around 2:00 pm on April 4th. It's a very different place from the Glen, in fact it's a hospital of extremes. As Veronika said, we weren't in Kansas anymore. Due to renovations and budget cuts, it’s currently in a very old, falling-apart building with limited space. But, that does not matter one bit. This is still one of the top neurological hospitals in the world and there is nowhere else I would want to be. Most importantly, the entire care team is incredibly dedicated, wonderful and highly competent in what they do and face on a daily basis. And, the facilities and equipment are state-of-the-art. This was the place to be for my condition and I knew it.

On Saturday, they ordered an MRI. I got the results of that test on Monday, April 7th. It wasn’t good news: the scans revealed cancer in my brain. The next day, I had a consultation with my neurosurgeon, Dr. Kevin Petrecca. He started by showing me my scans and explaining that MRIs are a very poor diagnostics tool, but that was what was available. He told me that while everything was pointing towards cancer, for someone of my age it was very unusual. Because of this and the potential impact on my leg, he recommended doing a biopsy first and then a resection if the biopsy conclusively showed cancer. As he was leaving, he said I had time to decide. But my mind was made up. He is THE expert after all.

After the biopsy, I was moved to a new room. Dr. Petrecca came to see me again and gave me more news. I have a glioblastoma. Now, I’m waiting to get it removed on Thursday, April 17th. After the surgery, I will almost certainly no longer have the use of my lower right leg. So this is my new reality. My late mother went through this two years ago almost to the day with her own glioblastoma. Her experience has given me a lot of perspective and the mental strength to face the battle ahead of me. Like she did, I’m going to document my journey on this Substack page. If you want to see how I’m doing and what I’m doing, follow this series as I update it. Being rather pragmatic, I’m going to take this step by step and day by day, while still looking forward to what I can and still enjoying life.

Jasper