Scott, my story so far

  November 20, 2018

Brain tumours have different types and classifications. Within each of those is a situation unique to the individual. No two brain tumours are exactly the same and no two tumours cause the same issues or impact a person in the same way. I hope this information can clarify some of the more typical questions people have and provide some specificity to my situation.

I had begun to get extremely bad headaches which were always referred to as migraines. I was told any number of things could be the source of these and was given different types of medications to try and help control them. There was no follow up on my situation. I had been waiting for 3 years to secure a primary care personal physician and there was a waiting list. I received my care through walk in clinics and the ER at the local hospital. Therefore the migraines and the mental exhaustion were not acknowledged as anything but minor issues. It was suggested to me that the mental exhaustion was a result of a stressful job (which I did have) and the physical exhaustion was probably a lack of proper nutrition and sleep. These statements about nutrition and sleep were assumptions, not based on any conversations I had had with any doctors.

Along with the migraines, my job became increasingly more difficult to handle on a day to day basis. My body would shut down by about 3pm, making the next hour or two extremely difficult in terms of staying awake and functional. One night, Kendra, my wife, woke me because I was flailing around and making all kinds of “crazy” noises. My lower back was in extreme pain and I figured I had either injured my lower back or I was dealing with kidney stones. We went to the Emergency Room and they wanted to do a CT scan for kidney stones. Kendra somehow convinced them to do a scan on my head as well. That was no easy task. She had to argue for quite some time before they relented (mostly because we were in St Thomas and the ER was empty). They returned and told me it was good news. I had no kidney stones. Then they increased my pain medication and as I was drifting into la-la-land I heard the doctor (who had turned his back towards me at this point) telling Kendra they found a very large brain tumour and that I had likely been having seizures. The seizures were confirmed quickly, and I began a year long journey of finding the correct seizure medication combinations and the correct doses. It was also at that precise moment they asked for my license and punched a hole in it, telling me I was no longer legally licensed to drive. At this point we were weeks away from moving into our brand-new home in Mt Brydges which might as well have been on the moon for a guy with no ability to drive. It turned out to be the least of my worries.

I was given steroids as well which were no fun either. I spent my days by myself pondering my shiny new tumour and what was going to happen to me. My mood swings were stressful. I put on a fair bit of weight (which I was thankful for when I could no longer eat properly). I also didn’t sleep very well. Eventually they took me off the steroids because the side-effects became worse than any of the possible benefits.

I was placed on what they refer to as “watch and wait” while I visited a number of different specialists regarding how to handle the tumour. This was the scariest part of this whole process. I was determined to have a glioma but they were unable to be more specific. The tumour is on my left side and is described as a 5cm perisylvian grade 2 glioma where the MCA traversed through it. Perisylvian describes the location of the tumour. As the tumour grew it began to cause issues such as a significant stutter and an inability to speak well beyond just the stutter. I was having difficulties swallowing and of course the epileptic episodes (seizures). The MCA is the “middle cerebral artery” described by Healthline’s Medical Network as “the largest of the three major arteries that channels fresh blood to the brain. It branches off the internal carotid artery. It supplies blood to lateral (side) areas of the frontal, temporal, and parietal lobes. The frontal, temporal, and parietal lobes control the sensory functions of the arms, throat, hands, and face.“

The tumour itself is completely inside of the brain and is inoperable. There is also danger of damage to the artery which is now inside the tumour. As the tumour grew, it restricted the blood flow and began to cause a number of the symptoms I was experiencing.

At the time of this diagnosis I was told I could expect to live between 18 and 24 months. The way this information was delivered was quite terrifying. We discussed all the possible treatments and the fact it was inoperable, but the doctor made it seem promising. At the very end of the conversation he dropped the life expectancy and then said, “Any questions”? We were so stunned and still trying to process whether we had heard him correctly when he stood up, shook my hand, wished me the best and then he was gone. We were left alone in that room until we were ready to leave and made the silent trip home.

Fortunately, we were able to find a specialist that dealt with tumours more along the lines of what I was dealing with and I was eventually given a much more promising diagnosis. They proposed a chemo and radiation protocol specific to a grade 4 glioma that they felt might help stop the tumour from growing for a while. That was my best-case scenario. Before moving forward, they wanted to attempt surgery to at least try to biopsy the tumour to confirm what they were thinking. Beyond hours of missing time during an awake craniotomy, I don’t know much else. When I “woke up” I had a terrible shake in my right hand that has essentially destroyed my ability to write cursive or print legibly and I can’t hold a drink without wearing it. They decided I needed to start the chemo and radiation right away. That’s where it got extremely difficult. My insurance company decided they would not pay for the chemo because it was for a stage 4 tumour. It was explained that I would never reach stage 4 because of the way the tumour is squeezing out my artery, and the insurance company stuck to their guns. Thankfully my doctor was able to convince the pharmaceutical company to treat it as a clinical trial since the drugs had never been used in this manner before. That fact surprises a lot of people but if it weren’t for that, I wouldn’t be here right now.

I went through 35 days of chemo and radiation (5 days on – 2 days off) and at the completion of that I did another 12 months of chemo (once a month for 5 days). I had an MRI one week prior to starting chemo, which was repeated each month, and I was shocked to find out that my tumour had actually begun to shrink. I was weak, and by the end of that 13 months I had lost a total of 58 lbs. I had been on a keto diet that my family had stressed over for months trying to perfect. I had gone straight into ketogenesis immediately and never fell back. To this day I believe that my diet as well as the treatment saved my life (Thanks Kendra, Mom, Dad, Kate, and Olivia). It was a very stressful time for everyone and at one point I had to stay with my parents to get the care I needed as well as giving my wife a bit of a mental break from the insanity that had become our lives. I felt sick thinking about the stress I put my family through. I also had some great friends pitch in to really help me out. Specifically, John, Kim, and Brett. My neighbours pitched in with the driveway shoveling and lawn care when possible and I’ll spend the next 20 years saying thank you to you all for that help. Especially Brian who would pitch in no questions asked and just always seemed to be there when needed.

When I completed the treatments, I immediately began to feel stronger and decided to get back to doing something to aid in my physical recovery. I began taking fitness classes at the end of February and met a group of the most amazing people who encouraged me and pushed me every step of the way. Tracy – there’s just something about you and your crew that made me excited to get up every day and rush over to your torture chamber. You are a special kind of person and when I needed someone like you the most you were right there. I also realized there really isn’t anyone else like you. You love what you do and it’s infectious. Thank you all for helping me pull myself out and getting me into the best physical shape I have ever been in. I didn’t know I could be this strong. Michelle and Jaime introduced me to yoga and helped me to create a me that I’ve always wanted to be. I feel mentally strong (most days) and now I realize how impossible it is to explain the positive impact that yoga can have on someone’s life. You’ve all made me understand what synchronicity and serendipity are and it’s amazing to see what it truly means when it happens.

I’m sure I’ve forgotten someone. That’s what I do now. My memory is muddy, and I can never remember the exact word I’m looking for. It’s why I love writing that much more – I have the time to pause and let the words come to me. Under pressure, I have no ability to speak in this manner. It’s why I can’t go back to work. It would take me 5x as long to do each task because of my memory issues. I’ve been writing this for nearly two weeks now. At any rate for those I have forgotten to mention, I truly apologize. It doesn’t make your contribution to my recovery any less important.

My tumour has, after almost a year, finally stopped shrinking. I have some natural suggestions I intend to follow up on, to hopefully rid myself of this for once and for all. Know this though, as long as it’s not growing, I’m not dying. I have no intentions of letting this thing win. I feel far too strong for that.

So now I work on continuing to build myself up physically and mentally and accepting certain limitations in my way (for now at least). I know some people with brain tumours who get upset when others say, “oh that happens to me too” or “that’s what happens when you get old”. I appreciate it. I know you mean it in a way that helps me feel normal. It does. We all have our “thing” and I don’t try to hide behind mine. It’s not my excuse for anything, it just is what it is. One of the best parts of my “thing” is that I’ve learned to shut up and listen. I feel like one of the best ways we can make this a better place is by listening to one another. So, I’ll just be here learning what I can for however long I can.