I have too many great memories of Scott to share here, Cuba, Panama, concerts, being extras in an indie zombie movie. He was my brother, he is missed and I will always love him. Bull

I met Scott over twenty years ago, initially online. We shared some mutual friends, in an online community, and lived in the same city. I remember chatting with him one night, it was nearly midnight, and he asked if I was up to meeting up finally in person. Despite it being so late, I said yes.

I drove down to this super sketchy area downtown Toronto where "the loft" was, and as I walked up the cold, grey stairwell, I almost turned around. But I was young and about 75% stupid at the time so I kept climbing and finally found his door.

When he greeted me at the door, he let out a big "Hey hey!", the way Scott does, gave me a big hug, and poured me a drink (whisky of some kind).

We hit it off immediately. We talked, and talked, and talked into the night (which I'm sure his roommate at the time just loved), and then he suggested a movie. He chose Legally Blonde, a movie in which I remember being in stitches over that he, "Mr. Punk Rock", would choose.

That night was the beginning of a 20-year friendship, which was more than a friendship to me. To me, he was my family, the big brother I never had, my champion, my confidante, my heart.

From the crazy loft days, where I would never want to leave at the end of the weekend, to your wedding in Cuba, to seeing me off when I moved to the UK for a couple years, piercings and tattoo parlours, that crazy week in Punta Cana, Scarborough weekends, Valentine's Day at Call the Office, my annual pilgrimages to Chatham and Mount Brydges for Kendra and I's birthday (where I always seemed to end up in the hospital), the hours long phone calls, and everything in between, I will cherish every memory of you and with you, for the rest of mine.

“Our dead are never dead to us until we have forgotten them.” — George Eliot

Liz Van Gerven

Published by Brain Tumour Foundation of Canada

November 20, 2018

Scott, My Story So Far

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.

Scott Meades

So sad to hear the news of Scott's passing; my early years with Scott were fundamental in developing real life survival skills, and I wouldn't be where I am today without him. We had so many fun times that it is hard to pinpoint any specific one. From slamming in the moshpit at CTO, or going to the Polish Hall to see a band...there are just too many. Watchin the Leafs at the old TML Gardens is certainly up there...I remember watching the anthem from the Hotel room (getting ready I guess lol), then running down, and getting to our seats before puck-drop. There also was the trip to TO to watch Danzig (who never made it across the border), which turned in to an epic house party that I will never forget (most of it). I could add a few more, but struggling to find the words right now....although we drifted apart after the early years, I have always reflected on my time with Scott as one of a kind, and I wouldn't have wanted to do anything differently (well maybe there were a few things lol)....Scott will always have a space in my mind, and sad to see him depart this world for now.

I always knew Scott as a kind, fearless and brave soul. From the very beginning he was always ready for the next adventure or finding the humour in a situation.

My heart goes out to Barb and Doug, Kate, Pete and Kendra. He was loved and will be dearly missed.

I only knew Scott for a short time. It was very obvious how much he was loved by his family, and how much he loved them as well. A great memory of mine was our time spent at the cottage this summer as Scott did not miss a moment to comment on how beautiful and peaceful it was. One of my favorite memories of Scott was having dinner at his house and even though he was sick you could tell he enjoyed our evening as he proceeded to break out into dance after dinner.

To his wonderful Parents Barb and Doug my family send you our love and prayers you are truly wonderful and special.

To Pete my deepest condolences I’m thinking of you my Friend.

To Kate, you were a special little sister to Scott and he adored you as you did him. He loved your gentle foot rubs and face massages to ease his pain. I know how much you looked up to and loved your big brother. I am always here for you.

Kendra I wish you all the strength and love returned to you ten fold that you have given over the years to Scott you could not deny how much love you had for each other.

My Heart goes out you all of you with Love

May Scott rest in peacefully

Love Shawn

I met when Scott and his beautiful wife Kendra when they attended my yoga classes in this small town in southern Ontario. Kendra a long time yogi thought yoga would be good for Scott’s recovery from his first battle with a brain tumour.

Soon Scott was a fixture in all the yoga classes Jaime Burnham and I were offering.

Scott and I would stand around afterwards and chat about yoga then it evolved to discussions about script writing and soon we found we had many connections from our Toronto days - we both knew musician named Spooky Ruben, he and Kendra were related to me by marriage for a bit through our Ottawa families, he wrote film scripts, produced live events, we both have a thing for skulls, we shared short films, and the connections continued. We were meant to be friends.

Scott joined our 200 Hours training at Mothership School of Yoga in 2019/20. He became a yoga instructor and inspired all of us with his hard work to build a strong body and mind. He was determined to be the exception to outcomes for his diagnoses and for a couple of years he was.

The pandemic was hard. Isolation and disconnection from yoga community was hard but Scott pushed through. We had many conversations and a couple distanced drive way visits during that time. Always looking forward.

A month ago, Scott popped out on the porch to say hello. I got the best hug, “Ship we can hang out all the time now!” he said. We laughed. It was heart medicine.

My life is better for having you in it. You are endlessly entertaining, I will miss your stories. You lived 10 lifetimes in your one. I know our paths were meant to cross so that I could be a part of your story. We talked often that there are no coincidences.

God Speed Scotty- go ride your banana seat bike and stand on your head and raise the vibration of the afterworld with your brilliant personality - tear sh*t up until we meet again.

In life, we come across so many different people. Some of the most beautiful souls impact us in ways we can never explain, but forever feel deep in our core. Scott Meades was one of those people. He always spoke as if it was others who made him strong, but in fact, it was he who brought us so much laughter and joy, that it made a circle of strength. You will be missed friend. You have finally found peace where there was so much pain. With love, Trainer Trace