We love sharing stories from our tribe. Check out this piece written by alum, Denis Raymond, sharing his journey from incurable cancer to a clinical trial to freedom. Denis is based in Ottawa, Canada and traveled to India as part of our 2016 India Odyssey Program.

Three years ago, at the age of 26, I found out I had brain cancer. Not just any brain cancer. Grade IV Glioblastoma Multiforme (GBM for short) brain cancer. The most aggressive, invasive, and deadly, type of brain cancer. The one that, with the best treatment currently available, has a median survival rate of approximately 15 months. It is incurable.

Before this revelation, I had traveled and volunteered abroad extensively and had recently returned to my hometown, Ottawa, to spend time with my family after the birth of my nephew. This turned out to be a fortunate decision; for it would be my sister, mother, and father who would come to my rescue at the height of my health crisis.

The Diagnosis & The Aftermath

Increasingly severe headaches, and 24 hours of diaphragm spasms, led to a CT scan that showed an orange-sized tumour lodged in my right frontal lobe. I was under the knife within 36 hours of the scan. It was deemed “successful”, with most of the tumour removed, and little-to-no post-operative neurological issues. I bounced back after the surgery and the following two weeks were spotted with parties and optimistic planning for future trips. The surgery was behind me, so therefore, I could move on, right?

Wrong. We were called in to the Hospital to sit with an oncologist. The pathology report indicated the presence of GBM cells.

Shock and survival took over. I researched possible treatments (severely depressing), complimentary and alternative therapies, and “cancer-killing” nutritional supplements and diets. After a seeming eternity of clutching at straws, I discovered a promising clinical trial. Though not a cure, it had a strictly positive impact on the experimental group’s PFS (progression-free survival) and OST (overall-survival time). The trial involved following the “standard treatment” for GBM (surgery, radiation and chemotherapy), alongside 2 years of using a medical device called the Optune.

The Optune took over my life. A device attached to my skull – it required a constant cycling of medical-grade batteries and changing of scalp electrodes. My equipment? A battery charger the size and weight of a microwave, a 15 lbs backpack I would need to keep at my side 24 hours a day, and a pile of single-use electrode arrays. The device and its demands robbed me of my former freedom.

Thankfully, I could still work as a teacher at a small Ottawa-area private school that could accommodate my special technical needs. I’d like to say I maintained a positive outlook about my future, but I did not; I worked towards accepting my life as it was, making the best of my time on this Earth, and having as much of an impact as I possibly could despite my limits.

The Two Year Mark & The Start of A Fresh Chapter

Fast-forward to the 2-year mark of wearing the Optune. I had just left my teaching job to pursue other projects. My MRIs had been continuously “stable” for over a year, and I was feeling a bit anxious about giving up the security of the device I had been attached to for so long. My oncologist echoed my sentiments, and we decided to continue using the device. However, thanks to surpassing the median survival time, my oncologist began to allow me the occasional “break” from the device in order to pursue outdoor-adventure activities, which would otherwise be unattainable due to the inconvenience of the device. At the end of each trip, I became more uneasy when it came time to “reattach” and return to the routine of using the device.

Then came India.

After going through the interview process, I was over the moon when I got a call from the Founder of A Fresh Chapter, Terri Wingham offering me a spot on the 2016 India Odyssey program. The experience was everything I hoped for. Our diverse group quickly took to each other, building a tightly-woven sense of community and support. The new-ness of India excited me. The people intrigued me, and their culture amazed me. My volunteer placements were wonderfully fulfilling. I was reunited with the sense of adventure and the passion for people I had forgotten so long ago. The intensity of this feeling of rediscovery overwhelmed me. I embraced every moment in the two weeks in New Delhi with my new Tribe, and every moment during the additional two weeks I took to explore Mumbai and Goa after the program’s end.

The trip home was sleepless and uncomfortable. I had not wanted to leave India. In the days leading up to my flight, possibilities had opened up to me to further extend my stay. I pushed these out of mind due to a single thought: I need to return to the device. I need the device. I can’t go longer without using the device.

It was, at this moment, that I had a revelation; what if I were to cut the device out of my life permanently? No more worrying about battery life and electrode-changes, no more feelings of dependency, no more constant reminders of the status of my health. After all, I was initially only going to use the Optune for 2 years (it was now 6 months later). According to my research, the complete absence of neurological issues and two years of stable MRIs are great indicators for long-term survival (>10 years) for GBM patients. Incredibly, my oncologist supported the idea, going as far as playfully encouraging me to sign a 35-year mortgage. “I have no medical reason or opinion that leads me to recommend your continued use of the device. Carry on.”

And thus ended a chapter of my life. Because of Terri, A Fresh Chapter, and my lovely new friends, I’ve been able to *finally* turn the page. Though I am not “cured” or “in remission”, I can look forward to many years of “real” and “present” years. Future issues will be dealt with when they present themselves; until then, I’m alive and free.

Have you been impacted by cancer and want to turn the page to the next chapter in your story? Whether you’re a patient, survivor, or caregiver, we’re happy to have you in our tribe. If you’re new to A Fresh Chapter, sign up here to be the first to know about our 2018 domestic and international programs: Become A Participant.