Navigating Life With Epilepsy
This post sheds light on the reality of navigating life with epilepsy, the toll it takes and explores coping mechanisms to empower yourself and others.
As the summer comes to an end, those of us in Canada and the United States have a long weekend, affording us the opportunity to reflect on the summer past and look forward to a new school year.
This has been a particularly challenging summer. A lot has happened since I last posted about my cancer journey, and given the amount of adversity and challenges my family and I have faced – I thought it appropriate to give another update on my journey.
August 23, 2023 I received news that my tumor had stopped responding to my clinical trial. I was to be unenrolled from the trial and scheduled for radiation and chemotherapy treatments shortly. Those of you that know me, or have been following my journey, know how much triathlon helps me maintain positivity, focus and purpose along my cancer journey. Almost a year ago – September 10, 2023 – is one of my most cherished memories. My wife completed her first IRONMAN 70.3, and the best part is we did it together.
After our race while waiting for treatments to begin, I had another seizure the start of October. My wife panicked because it was the first time she had seen me have one, and it was by all accounts not good. I couldn’t breathe and blacked out. By the time I came to the paramedics were tending to me and my lips had turned blue. They took me to the hospital for observation, and just a few days later my wife had to rush me back to the hospital due to auras – seizure precursors – where they were able to intervene medically. These events served as a wake up call that I was not as impervious to cancer as I had thought.
October 10th, I started my treatments. I underwent a total of six weeks of chemo and radiation – chemo daily, radiation each weekday. It was exhausting, but I got through it. With my final treatment on November 20th, I was cleared for travel and spent my holidays in Mexico with my wife and son. The following January I had another MRI and two days later met with my oncology team who shared the fantastic news that the treatment was successful. Not only was there no growth, there was actually some shrinkage of my tumor! They also soberingly told me that after some more rest, I would be scheduled for more chemotherapy.
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Check out the article Timelapse & Facts for a breakdown of the unbelievable logistics required for my daily treatment.
While undergoing radiation and chemotherapy, on October 20th I signed up for IRONMAN Arizona the following November. It had been a dream of mine to complete an IRONMAN and I had no doubt that I would. I trained throughout radiation and chemotherapy when I had the strength, and once my treatment was done, I stepped up my training.
In February, I started my first of 12 cycles of chemotherapy. The first few cycles were great, I had enough energy to stay on top of my training, but with each new cycle I was starting to get more physically drained. My blood work results didn’t always meet the required levels so I was forced to take additional rest weeks between cycles to allow my counts to climb back up before continuing. Throughout this time I kept up my training, but after my second of two warm up races I was drained.
This Labor Day, I’m scheduled to begin my 7th cycle of chemotherapy. Given the previous delays I hope to be done with my treatment before March 2025. Unfortunately if the physical strain wasn’t enough, I was about to have my mental health put to the test.
The same day I started radiation and chemotherapy, my mom underwent a biopsy for her own cancer battle. Trips to the hospital became more frequent and as the new year came, her health started to decline more rapidly. My sister brought her to visit us in the spring and it was shocking to see what cancer had done to her. More doctor visits brought more bad news.
In July, my wife and I traveled to Montreal to visit her, and my sister and brother-in-law, where we were blessed to shared her last great night. I returned two weeks later to visit her in hospice and spend a few days with her to say my final goodbyes. Afterwards she was mostly asleep until she finally passed peacefully.
It’s hard to believe she’s gone. I had my cancer diagnosis well before her and yet I am still here.
It was now August and I was completely drained. I had always tried to push through any adversity I was faced with, but my mom’s passing had finally taught me to listen to what my body was telling me, and to give myself grace when it came to my cancer journey. I canceled my IRONMAN Arizona race which I never would have done before.
ABOUT GRACE:
My mom’s passing had finally taught me to listen to what my body was telling me, and to give myself grace when it came to my cancer journey.
I have started pulling back on pushing myself so hard. In Canada, every 3 minutes someone is diagnosed with cancer and their lives are forever changed. My mother, father, aunts, and cousin have all battled it, and some have lost that fight. This coming Labor Day I will be starting my 7th of 12 rounds of chemotherapy, and that’s the race I’m training for now.
CANCER FACTS:
In my home country of Canada, every 3 minutes someone hears the words, “you have cancer” – and their lives are forever changed. According to the WHO, cancer is the second leading cause of death globally. It's not some unseen assailant – my mother, father, aunts, and cousin have all battled it, and some have lost that fight.
Less than two weeks ago, I received fantastic news – my tumor is still responding to chemotherapy and has even shrunk! As for my dream of becoming an IRONMAN, I’m still training – albeit at a more sustainable pace – at least until my treatment is over. I have registered for IRONMAN Ottawa at the end of next Summer and hope to see the starting line, but in my eyes I’ve already proved everything that I need to. None of us know what the future holds – all we can do is be smart, present, and win at the ultimate endurance race – life.
The best part – I know my mom would be proud.
This post sheds light on the reality of navigating life with epilepsy, the toll it takes and explores coping mechanisms to empower yourself and others.
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