5 Years Without a Stomach!

5 years ago when our surgeon told us the earliest available date for my total gastrectomy was going to be March 6th, the day after Ash Wednesday, we knew it was the right call.

As a pastor, the season of 40 days leading up to Easter is an opportunity for personal reflection and refocus on what is most important in life. Over the past 5 years we have been on a crazy journey as a family. I have been thankful for the redemptive opportunities to encourage and support other cancer/CDH1/HDGC patients through No Stomach for Cancer simply by telling my story. Life without a stomach has not meant slowing down for us, in fact, it seems like it went into hyper speed. So what am I reflecting on my 5th gastrectoversary?

Can’t Stop, Won’t Stop – my family and friends still like having me around.

Before surgery I thought my life without a vital organ would slow me down, but in reality, it has gotten busier. My family grew about 2 years into this journey with the birth of my youngest daughter, Felicity. When we began this journey, it was important to me to journey forward with courage and grace for my family and my friends, but especially for my two daughters who both have a 50/50 chance of inheriting CDH1/HDGC. My exuberance and desire to soak up all life has to offer might some crazy to people on the outside, but I have come to realize how incredible life can be despite our circumstances.

I continue to grow in my career as a teaching pastor at my church. My growing skills opened up opportunities to guest speak in various contexts for the cancer community and beyond to encourage others on the journey. it continues to be a blessing to see my gifts, talents and passions intersect with my health journey. These opportunities have become a redemptive aspect of my disease – to know nothing is wasted, not even bad genetics.

Pain is part of the Journey, but I wouldn’t have it any other way.

There are some annoying parts about life without a stomach for sure. Constant blood sugar issues, chronic bowel obstructions which guarantees a 4 day stay in the hospital, and frequent gastrointestinal pain, in the grand scheme of things, it is all a part of life. To live life is to experience pain, but it is also part of the journey on the way to experiencing greater hope, joy, love and adventure. Flying still causes discomfort as the gas expands in my bowels like a bag of potato chips at high altitude, bust since “slowing down” is not in my life’s vocabulary, it has not stopped me from traveling to Israel, Guatemala, Paris, Zurich, Hawaii, and all the adventures everywhere in-between. To this day, I try my best to cherish every memory, every taste, and ever experience because it makes the journey through the pain worth it.

The Growing Seahorse Community – We Don’t Have to Journey Alone

We have met some incredibly inspiring people who are doing doing amazing things without a stomach, and this is just the beginning. Each newly diagnosed patient is followed quickly by a flood of encouraging comments from others in their stomach-less journey. Our varied experiences still surprise me, but the community is starting to see some common themes about our struggles: dumping, reflux, energy, and blood sugar. Over the past five years we have celebrated countless numbers of people who are now

declared, “cancer-free” and “cured”. Our community has also rallied around our own mascot, the Seahorse, a naturally stomachless creature.

Amid celebration, our community has also experienced heart break as we said, “goodbye”, to a couple of our fellow seahorses. The difference in community over the past half-decade has grown to abounding abundance in stories and experiences. While the struggle is real for all of us, our mutual encouragement and commitment to each other means we do not have to journey alone if we take the risk to share our story.

I do not know what the next 5 years without a stomach will hold, but I’m expectant, hopeful, and anticipating more and more. Thanks for journeying with me.

Grace and Peace,

Steve