Since my surgery, I have been scanning my facebook support groups as well as instagram hoping to find locals with CDH1+ who also had a total gastrectomy. Given that the CDH1 genetic mutation is rare with only 1 in 9 million affected, the chances were slim that I would find someone. But I kept searching #CDH1, #totalgastrectomy, #nostomachforcancer hoping I’d find somebody.
In March of this year I found a post on Instagram from another person with the CDH1 mutation who also had their surgery with Dr. Swallow at Mt. Sinai in Toronto. I was pumped. I sent her a private message that went something like this, “Hi there, I also had my stomach removed by Dr. Swallow at Sinai in 2014 as well as my mom in 2010 due to the CDH1+. I wish you the best of luck in your recovery!!!!”.
A few days later I heard back from her. Her name was Heather and at that time she was recovering from a post operative complication from her total gastrectomy. She had her surgery on May 6, 2016 – almost an 2 years after mine. After sharing some personal stories about how we found out about the CDH1 genetic mutation in our family, we realized that we only lived an hour apart. A meeting was definitely in order.
Due to Heather’s post op complications as well as my unfortunate IVF and miscarriage misadventures, our meet up was delayed; however, we finally managed to connect in person on October 20th.
What were we going to do? The fall colours were in full blast at that time and my hometown is known for waterfalls and hiking. So, we decided to go for a hike and then get food (obviously). As soon as Heather arrived, we immediately hit it off. Heather’s story was one of sadness and triumph. Her mom had lobular breast cancer 8 years ago and survived. Unfortunately, she developed diffuse gastric cancer and by the time it was detected, it was metastatic and too advanced to do surgery. During this time, her whole family was tested for the CDH1 mutation and her and her aunt tested positive for the gene. Heather decided to have her total gastrectomy. Her immediate recovery was much better than mine. She only spent a few days in the hospital versus my 10 day run. But later dropped a significant amount of weight and needed to be re-admitted to the hospital. Sadly, during this time, her mom passed away.
But you wouldn’t know about this sad story unless you talked to Heather about it. She was the most positive, optimistic, and outgoing person. You also wouldn’t realize she lives without her stomach as she is a mother, farmer, graphic designer and small business owner. She owns “Feeder Flower Farm” focusing on growing specialty cut flowers as well as running holiday workshops.
We spent the whole time gabbing and sharing stories that we both forgot to take any pictures of us hanging out that day. We decided that we needed to meet up again. This time with our husbands and family.
Brandon and I drove up to Heather’s neck of the woods. We were going to go for a hike as well that day. But plans quickly changed. We met their dog, Zelda. Jay, her husband and their wonderful almost three year old son, River.
Jay was wearing a Zelda t-shirt. For those who know me, know I love Zelda. Zelda was also special to them. We all gathered around and sat in her living room and drank delicious coffees. Brandon was the centre of attention as their cat and River all surrounded him. I noticed that they had a PS4 with a stack of video games and an X-box. Gamers. For those who know Brandon and I, know that we also are big into video games. If that wasn’t enough, I noticed that they had a shelf filled with board games, BUT not just regular board games, highly strategic ones that cool nerds play. Board Gamers. We had more in common than just having the CDH1 genetic mutation and missing a favoured organ.
We ended up bailing on the hike (since it was cold and gross out) and ended up playing a board game, chatting, and eating delicious food. It was a wonderful Sunday afternoon. Just before we left, Heather and I remembered, we must take a picture! It was the first but definitely not the last.
The thing about CDH1 genetic mutation is that it sucks. It really sucks for so many reasons. When I was diagnosed, I told myself that I may not understand why it happened to me but the answers would become clear as my life moved on. This has been all true. The past four years have brought many positive things into my life, and now I can add Heather and her family to my list.