A journey within a journeySeptember 20, 2013
It’s been just over four weeks since I said goodbye to some of the most incredible and inspirational people I will ever met. However, this statement could be held true whenever I’ve had to the opportunity to be a part of a Young Adult Cancer Canada (YACC) experience. Having attended the YACC Survivor Conference in Toronto in 2012, followed by my first Retreat Yourself experience this past May in Abbotsford BC—both of which were life-changing experiences—I couldn’t wait to attend the Retreat Yourself Adventure this past August in Newfoundland.
Let’s start at the beginning
My whole life prior to my diagnosis was always full of some sort of physical activity that would push my body to its limits—and in some cases, break them. Ever since I strapped on my first pair of skis at age three or four, I have had the urge to live fast and on the edge. Some might even call it reckless, and to be honest, I’m sure I have been at times (or even still). My body has taken its fair share of beatings as I progressed from skiing to skateboarding to snowboarding where I eventually turned professional. During those years I had many injuries, and ultimately they forced me out of the game. My passion for all those sports still keeps me playing, but at a slightly slower pace (most of the time, anyways). So when I was diagnosed with testicular cancer roughly two and a half years ago, I just saw it as another injury I had to overcome. Things quickly snowballed and my life would be forever altered in an unimaginable way.
While I awaited the biopsy of my testicle and follow up scans, I was also awaiting a second confirmation test of a rare hereditary gene mutation called CDH1. It’s a mutation that causes the body to form Diffuse Gastric Stomach Cancer without the body showing any signs usually until it’s too late. Being hereditary, it becomes part of the bodies genome, and therefore the body never really detects anything wrong until you’re too sick to react. With that, people who possess the CDH1 mutation are usually encouraged to take preventative measures and have a total gastrectomy (to have one’s stomach entirely removed).
Now the only way I knew to even get this checked was when I received a letter from the Ontario Government stating my family’s medical history. Why from the Government, you ask? I was adopted at birth and therefore never knew any of this information, so in some way I was really lucky to be contacted and since reunited with my biological family.
The two results came back within close proximity of each other, and neither of which were something I’d wish upon my worst enemy (if I had one). The biopsy showed my tumor was 20 per cent seminoma and 80 per cent teratoma. The doctors originally felt that the operation would be sufficient, but the scan results showed that the testicular cancer was in stage two and had spread to my lymph nodes in my lower abdomen. Since the majority of my tumor was teratoma, a tumor type that is immune to radiation and chemo, the doctors felt it would be best to opt for surgery and not to go through radiation or chemo since it would likely yield no positive effects, and would possibly cause further problems.
I wasn’t given much time to soak that in; I received the news that I was indeed a carrier of the CDH1 mutation and that I had a massive decision to make. Life without a testicle? Whatever. But life without a stomach? I wouldn’t have been able to imagine it if I hadn’t met my biological mother and a great fellow that the BC Cancer Agency introduced to me. They had both undergone it due to the same reasons. I saw it was possible, but I also heard and read how hard the recovery was and that some people really struggled, period.
I love food, being active and enjoying life, all of which was now a big question mark moving forward. What made the decision really hard though, was that there was no signs of cancer, so I was basically making a decision without knowing if it was necessary or not. The odds were definitely in favour of cancer forming, so it was an obvious decision in some ways.
Once the decision was made, my doctors organized it so that I would undergo both the total gastrectomy and lymph node removal the same day: May 30, 2011.
As no one in their right mind can imagine—except those that have undergone a total gastrectomy—it was how those that have experienced it sold it to me: extremely tough! I’m sure there are more difficult things to go through in life, but I can’t imagine them, and I’ve been through five knee surgeries, a broken back and then some before this.
Needless to say, the operations were successful and biopsies showed I had pre-cancer cells growing on the outer wall of my stomach. That was bittersweet news during the recovery as learning to function without a stomach is long and hard. It has been just over two years now, and I’ve adjusted to a point that life is as close to as it once was as it’s going to get, so I’m content.
This is where my connection with YACC began, and has made my experience with cancer a positive one. Yes, I said “positive.” While all cancer patients experience similar emotions, it’s the young adults that experience some unique trials and tribulations. In most cases they are living away from their families, finishing school or starting a career, beginning a relationship, starting a family, and are still finding their ways in life, unlike children who are surrounded with family every possible second and have no financial worries, or middle-aged to seniors who have their finances and families sorted.
It is that understanding and support that YACC has so graciously created within the experiences I have had while attending their functions. There has not been one person at any of the functions I’ve attended that has not been on the same page, or hasn’t been understanding of what the others have been through on an emotional level. Isolation and a need to connect to those of a similar age is by far the most recognizable issue. Most do have some support from friends and family, but it’s not the same, and it’s hard to explain unless you have experienced it.
Everyone attends with the same anxiousness as well; they don’t know what to expect, but everyone always leaves as rejuvenated and much more connected individuals. The conversations are “real” and there are no social barriers; everyone is equal, and so they should be. Life is fragile and every second counts, even for those you may never meet in your lifetime, and it’s these functions that YACC puts on that really emphasize this, none more so than the Retreat Yourself Adventure.
Retreat Yourself Adventure 2013
The Retreat is packed full of amazing adventures, and it really does challenge the bodies and minds of the participants. We hiked a total of 22 kilometres along some of the most beautiful East Coast scenery imaginable, kayaked six kilometres of the Atlantic Ocean among the jagged cliffs, and rode 10 kilometres of zip lines through the trees high in the hills.
There is so much more to the Retreat than just supporting each other with the all we have been through while battling our cancers. We strengthen connections and everyone is taking on so much more than just the emotional challenges cancer creates. It’s just simply amazing!
YACC is family, and all those I have met through them will forever be close to my heart. The only thing I wish is that life was always like being at a YACC function, and that is why I say cancer is now a positive experience in my life; I have now had the extreme pleasure to meet, get to know, and form lifelong bonds with some of the most incredible and inspirational people I will ever meet.
Thank you my YACC Family. Love.