Thursday, August 3, 2017

14 Months Stomachless: An Update On Our CDH1 Journey

Wow, summer has flown by! We haven't updated in a while, so we wanted to let everyone know how the past couple of months have been and what's on the horizon.

Enjoying a sister night at New Kids on the Block
The last post was at the beginning of May, six weeks after I (Jessica) underwent emergency surgery for a twist in my bowels. Honestly, this recovery was a lot worse than the recovery from the gastrectomy, probably because I was weaker going in. There is also now the theory that I probably had a small "kink" in my intestines the whole time that slowed digestion, which is why I never really experienced dumping syndrome or malabsorption issues like a lot of TG patients go through. After the emergency my bowel had been run twice and any kink there was gone, so my body finally felt the full effects of the TG on top of the bowel repair. Towards the end of May I started on digestive enzymes and started seeing some improvement in my ability to digest foods. I still I have to be careful with what I eat, mainly high fat foods and sugars, but most days are pretty good. My weight dipped to right around 100 pounds at the lowest, which for a 5ft 9in girl is tiny. But I'm actually back up to almost 115, so my doctor is super happy. Goal is to be 120 by the end of the year.

Mentally our family is doing better, but still recovering. My doctor's do feel that I'm suffering from anxiety and PTSD from the whole episode. They say it's very common for people who have near death experiences and medical emergencies to go through these issues after. Yes, I realize how lucky I am to be alive and I do realize that God worked together a series of miracles for me to get to UAB and the doctor I needed. But it was still traumatic to go from totally healthy on a Monday to near death on Tuesday. I've started medication and as a family we've started counseling and it really feels like we are mentally on the right track.

The next big concern on the horizon is our high risk of lobular breast cancer. The plan has been to screen us via mammograms and MRI's every 6 months (with MRI's being the most accurate form of imaging) until a time we were ready to pursue prophylactic mastectomy. Nicole and I both learned the hard way that due to our weight loss over the past year we no longer have enough body fat for accurate MRI imaging of our breasts. Nicole's last MRI showed a spot they wanted to take a closer look at. An ultrasound revealed another spot, so they decided to perform a biopsy. During the biopsy they discovered more small knots than what had been seen in the images. Luckily all the biopsies came back clean; however, after consulting with the breast surgeon it was determined that since imaging was not accurate and she was already dealing with these cysts and facing frequent biopsies that she should go ahead with the mastectomy now instead of the fall of 2018 like she had planned. So next week, August 9th, Nicole will undergo a prophylactic double mastectomy at UAB. Here's where things get a little tricky. The reason she wanted to wait till the fall of 2018 was because her husband Heath left for a year deployment to Kuwait on July 16th. Thankfully the first few weeks of his deployment he is still in the US at a base in Texas and will be able to come back to Alabama for her surgery and be with her for a few days after. We went through our gastrectomies together, but I'm glad we will be doing the mastectomies separately so that I can help take care of her once Heath has to leave. Hopefully she will be able to return to work in 4-6 weeks. Due to her small frame they can't do reconstruction right away, it would put to much strain on the skin. Instead, they will place expanded during the surgery and at set times over the next few months the expanders will be filled with saline to allow the skin tone to stretch and adjust. Once they reach a good size and the surgeon feels like her body is ready a second surgery will be performed to swap the expander for implants. The recovery from this second surgery is apparently a walk in the park compared to everything else. And with that, Nicole's journey to beat hereditary diffuse gastric cancer and lobular breast cancer will come to an end and she will have kicked cancer in the rear end!

We are also so excited that No Stomach for Cancer has invited us to take part in their Night of Hope at City of Hope Cancer & Research Center in Los Angeles. The event will take place in November, which is also Stomach Cancer Awareness Month, and we will be speaking during the patient spotlight. From the moment we were told we carried this mutation we knew we wanted to raise awareness for CDH1, the cancers associated with this mutation, and the importance of knowing your family history and going through the process of genetic testing. This gives us an opportunity to speak to medical professionals and share with them the patient side of gastric cancer. We also hope to do another fund raising effort in November to correspond with Stomach Cancer Awareness Month and send the money raised to Dr. Guilford in New Zealand again. His research into an oral preventive drug is such a promising ray of hope for us that our children may be able to avoid a stomachless life, so we want to support his efforts in any way we can.

Over the past year and a half we've gotten to know so many people with CDH1 mutations like us who face the same challenges we do. I can't even begin to tell you how wonderful it is to have a group of people who understand exactly what you mean when you talk about things like bile reflux, malabsorption or food getting stuck. We've found an amazing "stomachless family" who always laugh with us about the crazy things we encounter, offer encouragement on bad days, and cheer us on with each milestone reached. And as always, we are both so grateful for all the love, support, and prayers that have been poured out on us by all of our family, friends, and people who just run across this blog and send us an encouraging thought. Despite any setbacks we've faced in the past 14 months, we are both living happy lives and we know a lot of that is due to all the love and kindness you all have heaped on our families along this road. In the coming months we do ask for continued prayer, specifically in these areas:

1. A successful surgery and recovery for Nicole.
2. Heath's deployment and their family as they go through this year without him.
3. Continued physical and mental healing for both of our families.
4. Advances in research into CDH1 and the cancers associated with this genetic mutation.

We love each and everyone of you. From the bottom of our hearts, thank you for caring about us and our families, for understanding our limits and always encouraging us to push to be the best we can be. 


  1. Jessica and Nicole,
    I got the chills reading this because I met Nicole's husband Heath and his good buddy Hugh when we attended the Unit Movement course together awhile back! I actually had numerous meals with them.
    I am one of those females that is a wife and mother that goes to a course that is typically all Males and stays to herself because I really don't trust anyone. But when I talked to Heath and Hugh a few times I knew that they were genuine and I could trust them! we developed a good friendship in just a few days and I remember Heath telling me about Nicole and her surgery and I just thought to myself, wow, what an amazing woman to be going through all of this, something that is rare and doesn't happen to many people. I think I remember him saying that her sister had the exact same medical conditions and I was shocked that this could be happening to two sisters at the same time. I will be praying for you both as you complete all of your needed surgeries and recoveries. I will also be thinking about Nicole and her children as Heath is on his deployment! Nicole you have an amazing husband that showed me just through his words how much he loves you with all of his being. Heath and Hugh are two of the funniest people I have ever met, I think that their accents definitely added to the humor!
    1LT Kimberly Ann Herb

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