Losing My Grip on Control

A Preview of What Progression Could Be Like

Friday morning, July 4th, started like any other day. I woke up. Stayed in bed a bit, reading on my phone. Got up, showered standing up; I don’t have to use the shower chair anymore - another win. My last two fingers still weren't fully opening and my wrist was sluggish, but I still easily shampooed what little hair I had left on my head, scrubbing with both hands. Next, I grabbed the body wash with my left hand and my loofah with my right and started to squeeze soap out.

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