This past week I was invited to go to the City of Hope’s Symposium on Stomach Cancer sponsored by No Stomach for Cancer. It was here that I finally got to meet Heather Huus, Nicole McDonald and Jessica Sasser, Hannah Davis, Wagner Viana and the head hanchos for No Stomach for Cancer. It is safe to say I have never been surrounded by so many stomachless people it my life… and it was amazing! Meeting these incredible humans in person, sharing about nausea, dumping syndrome, pain management and talking about our bowels as if they were normal topics of every day human conversation was a uniquely freeing experience. Eating at a restaurant together was basically a hilarious inside joke. To the waiter, we are all on diets and we are all diabetics. It works every time. This week in LA was a tangible reminder of how amazing the CDH1/HDGC community really is as I watched the team share stories and support others in various stages of the journey from diagnosis to 5 years post-surgery.
Being at the City of Hope in the company of the top surgeons, researchers and geneticists in the area of gastric cancer gave me hope for the future because I got to see and hear about how far research for Gastric Cancers has come, but also how much further we have to go. One of the advancements in total gastrectomy research has come from the collective pool of patients who have undergone TG’s over the past few years. At the time of my surgery, I thought a fully open surgery was the only option, but this weekend I’ve learned that patients with laparoscopic gastrectomies statistically have far better outcomes (according to Dr. Woo from City of Hope). While it was a little to my annoyance to know my surgeon refused to consider a laparoscopic operation, it does tell me how much our stories contribute to bettering practices for total gastrectomies. Research is now pushing towards new procedures which include a more wholistic approach to patient care and even robotic surgeries. Unfortunately, there is much more work to be done in regard to early detection which has not advanced much.
Our experience of the symposium wrapped up with a night of healing for patients. Heather, Jessica, Nicole and I got to share our stories and I was moved to hear about their journey with all of the challenges and the hardships. After our time of sharing we were able to answer questions and others stepped up to share their stories which I was deeply encouraged by.
My favorite part of the night was taking my friends for a celebratory donut from myfavorite donut shop of all time: Donut Man! I got to introduce my friends from Alabama and North Dakota to the life-changing Tiger Tail which they all agreed was delicious! Together, we each had a bite or two of various donuts which was a perfect conclusion to an amazing week.
I was reminded at the Symposium of the importance of continuing to share our stories. It really is the only way we can walk through the worry, anxiety and fear. The sentiment was shared between all of us: knowing what we know now on this side of surgery, we would not have been so afraid.
As a health update:
3 years out of surgery, I have basically normalized my diet. I still struggle with blood sugar issues, but that speaks more to my love of donuts then it does to life without a stomach. Chronic bowel obstructions are still an issue although Kate and I have been managing onsets from home which has saved us a few trips to the hospital. When the pain gets really bad we have a protocol at the hospital and also what to say to the doctors to get them up to speed. I cannot underline enough the power of being your own health advocate – it will save you the frustration and will allow you to get what you need without the guess work.