Thursday, September 22, 2016

Four Month Update, Faith, and Our First CDH1/Stomach Cancer Fundraising Project

Here we are, four months post total gastrectomy. I know for my part I am amazed at how much life has been returning to normal over the past month. It feels like each week and each month things get better. Our families are planning a Christmas cruise to the Bahamas and we are so looking forward to sun, relaxation, and swimming with dolphins. Who would have thought we’d be planning a cruise six months after having our stomachs removed?! I celebrated my 32nd birthday over the weekend and I reflected on how much has changed in the past year. Last September we’d never even heard of CDH1 and within a year we discovered we carried this mutation and had prophylactic total gastrectomies. This time next year we will be even further down the road and adjusted to this stomachless life.
If you read our 3 month update then you know we were each experiencing some complications. Nicole’s incision has been a big problem for her. It would never fully close at the bottom and she’s had several procedures done in the doctor’s office to try to stimulate the incision to heal, but nothing was working. Nicole got our surgeon in Houston involved and after hearing her symptoms and seeing pictures of the incision he felt the best course of action would be for her to have another surgery to excise the wound and have a wound vac placed. He felt that it would heal within a matter of weeks if this route was pursued. Our surgeon here in Birmingham didn’t really want to perform surgery or insert a wound vac because he thought it would be hard on her. Naturally this has been a very frustrating situation for Nicole. Of course no one wants to go through surgery, but it’s been over 18 weeks since surgery at this point and not being totally healed is preventing her from doing things that she needs or wants to do. One thing we’ve learned from this whole experience is that we have to be our own advocates and push for our own care sometimes. Nicole has stayed on top of the problem and been in constant contact with both doctors’ offices. After another check-up, removal of debris, and CT scan, our Birmingham doctor has finally decided to move forward with surgery. She will undergo this procedure next Wednesday, September 28th and the hope is that this will put her on the path to finally healing. 

I had an esophageal dilation performed on August 19th to repair a stricture. While that dilation did improve my ability to eat, it also opened up the passage for bile to start coming up. For the first two weeks after the dilation I had persistent nausea, a bad headache, and my mouth tasted disgusting all the time. When we went in for my second esophageal dilation on September 2nd it was determined that I was experiencing bad bile reflux. I was placed on Xifaxan for 10 days to kill off any bacteria that may have been in my gut and I was given a tip that has made all the difference for me, add acidic foods and drinks to my diet. Bile is alkaline based and since I don’t have a stomach to produce acid anymore I can become too alkaline. We may need to buy stock in Tropicana based on how much Trop50 orange juice I have been taking down recently! Since the second dilation my nausea has been much, much better and I have been able to eat very well and have even gained a few ounces back. I am meeting with a GI specialist in two weeks to hopefully try some meds to help with the bile and then I will have one last esophageal dilation at the end of October to make sure my pipe is staying open.

It’s no secret that our faith in God and belief in His perfect plan has been what has sustained us through the early days of diagnosis and the surgery and recovery. I was asked to tell my story at church a few weeks ago and wanted to share that with anyone who may stumble across this blog: Psalms 139: 13-16 tells us “For You formed my inward parts; you knitted me together in my mother’s womb. I praise You, for I am fearfully and wonderfully made. Wonderful are Your works; my soul knows it very well. My frame was not hidden from You, when I was being made in secret, intricately woven in the depths of the earth. Your eyes say my unformed substance; in Your book were written, every one of them, the days that were formed for me, when as yet there was none of them.” Our CDH1 mutation was not a shock to God. He knew from the beginning that this was part of us and He knew that if we would trust Him then this could be used in a magnificent ways for His glory.

Now that our surgery is behind us we want to turn our attention to raising awareness and funds for CDH1 and hereditary diffuse gastric cancer. Our hope is to one day have an annual walk to raise money, but our recovery just does not allow for that this year. But thanks to my fantastically talented cousin-in-law Kristi Sasser we will be selling a specially designed t-shirt and all the proceeds will go to Dr. Parry Guilford. Dr. Guilford is a genetic researcher in New Zealand who discovered the link between the CDH1 mutation and hereditary diffuse gastric cancer and lobular breast cancer. He is currently working on a drug that would be taken every 2-4 years to kill off early cancer cells. Here is a great article that explains the drug: In the next 10-15 years Caden, Liam, and Andy will be tested for this mutation. Our hope is that if any of the boys carry this mutation they will have the option of taking this drug instead of having to undergo a total gastrectomy like we did. We will post the design and ordering information very shortly and we hope you all will support this endeavor!