Speaking Up for Stomach Cancer

When we started this journey and created this blog, our intention was to post regularly. We’d seen several people be active bloggers but stop posting as they moved further out from surgery and we didn’t want to do that, but that’s exactly what’s happened. Life has been blissfully normal and quiet lately, so we really haven’t known what to post.

We did step out and do something out of the norm last week though. We traveled to Washington D.C. and on February 11^th we gathered with almost 100 other stomach cancer patients, caregivers, and supporters to participate in Debbie’s Dream Foundation’s 8th Annual Capitol Hill Stomach Cancer Advocacy Day. You see, it’s expected this year that roughly 27,600 Americans will learn they have stomach cancer, and more than 11,000 will die from the disease. The overall 5-year relative survival rate of people with stomach cancer in the United States is 32 percent according to the American Cancer Society. At Stage IV, the five-year survival rate is merely five percent. The initial diagnosis of stomach cancer often is delayed because up to 80 percent of patients are asymptomatic during the early stages of stomach cancer, leading to poor survival rates. At present, there are no established screening tests for stomach cancer and there are very few treatment options to offer those diagnosed with stomach cancer, particularly at late stage. These facts and statistics are not okay, we must do better. That is why we met with members of the House of Representatives, Senators, and legislative aides to discuss topics directly affecting funding for stomach cancer research.

The first major topic of discussion was requesting their support to keep stomach cancer on the Depart of Defense list of cancers for the Peer Reviewed Cancer Research Program. This program exists to fund innovative basic, applied, and translational cancer research to support service members, their families, and the American public. Stomach cancer was added to the list in 2015, and since that time the PRCRP has invested, through 34 awards, more than $17.4 million in stomach cancer research. Studies funded by the PRCRP are addressing critical research gaps and unresolved questions within the field of stomach cancer. Our ask was simple, sign a letter to the Appropriations Committee requesting stomach cancers ongoing inclusion on the PRCRP list. Inclusion on the list one year does not guarantee your place the next year, so every year it is important to go back and fight for our spot. We did get a little push back from one aide that the DoD shouldn’t be funding medical research but focus solely on defense matters; however, the reality of the situation is that to give our country the best defense possible, we need our service members healthy and well cared for. Stomach cancer is a service-connected malignancy for service members who experienced hazardous exposure to ionizing radiation. Additionally, due to past and present deployments, U.S. Service members and Veterans may have an increased risk of stomach cancer, especially if diagnosed with H. pylori. Studies suggest that the risk of H. pylori infection, the primary identified cause of stomach cancer, increases among military personnel during long-term deployment. For the most part everyone we met with was extremely positive and supportive, I think we can all agree that ending cancer is a non-partisan issue. Going into this year, only one representative from Alabama had ever signed a letter to the Appropriations Committee supporting the inclusion of stomach cancer on the PRCRP list. After last week, we except to see a few more on the list for FY21.

The second ask we brought to our Congressional leaders was focused on funding for the National Institute of Health (NIH) and National Cancer Institute (NCI). Congress has historically been very supportive of cancer research and funding for the NCI has consistently gone up. As the NCI budget goes up, so does the number of research grant applications and the demand is still outpacing the funding; there simply isn’t enough funding to support all the wonderful research ideas out there. In order to support a robust suite of research opportunities we asked Congress to fund the NIH at $44.7 billion for FY21, a $3 billion dollar increase from FY20. Of that amount, the request is for $6.9 billion for the NCI, a $500 million increase. In our home state of Alabama we actually have a few institutes that have benefited from funds from the NIH/NCI, including the University of Alabama at Birmingham (UAB) the hospital that has taken care of Nicole and I since we were diagnosed with our CDH1 mutation. I think this is the reason most of our Alabama representatives were so receptive and supportive of funding the NIH and NCI, progressive, groundbreaking research is taking place right here in our state.

One of the best parts of participating in these events is time spent with others who have faced stomach cancer in a variety of ways. We heard stories of survivors, current patients, caregivers, people who lost spouses, children, and friends, and fellow CDH1 mutants. Most of these people we only see or talk to once in a blue moon, but they are our family, we share a bond that you can’t understand until you’ve been in the same trenches, faced the same fears, celebrated the same milestones (like eating steak or drinking your first glass of wine stomachless). While Nicole and I are called the “stomachless sisters,” the truth is we have a whole group of sisters and brothers whom we love dearly.

What’s on the horizon? We have several events and causes we’d like to push forward in 2020-2021. Here in Alabama we’d like to push our state House and Senate to pass a resolution officially declaring November “Stomach Cancer Awareness Month” in the state. While this seems largely symbolic, the truth is that stomach cancer is something most people don’t have on their radar, they don’t know the early warning signs and as mentioned earlier, that leads to a late stage diagnosis and lower survival rates. Any measure to draw attention to the disease can only help improve public knowledge and even if it only leads to one person pushing for early testing, one life saved would be worth every effort. In October we will be back in DC for No Stomach for Cancer’s Spotlight on Gastric Cancer event. This falls event will be very exciting as it is set to include Dr. Parry Guilford, the man who discovered the CDH1 mutation and is tirelessly working toward a better treatment alternative for our children. We are also working with our team at UAB to hopefully host an event for NSFC here in Birmingham in the near future. UAB is an amazing facility, one of the top 10 hospitals in the country, but somehow it doesn’t seem to get the attention or credit it deserves, and we would love to see UAB recognized in a national program supporting stomach cancer patients. Supporting fundraising efforts for No Stomach for Cancer is always at the top of our list. With that said, we are looking for ideas for fundraising events that are unique, that people would want to participate in, and that could be carried out simultaneously across the country by other NSFC supporters. Please bombard us with ideas and as we come up with things, we will post them on our Facebook page for feedback.

Almost four years have passed since we started this crazy, stomachless roller coaster. It seems odd to say that we are grateful for surgeries and losing body parts, but at the end of the day this gave us the best shot at a long, healthy life and that’s so much more than many people get. We are also incredibly thankful to be surrounded by family and friends who support us, take care of us on rough days, and always champion the cause of stomach cancer. We love you guys!

2018 Stomachless Sisters CDH1 T-Shirt Sale!

It's here! The 2018 T-Shirt Sale for CDH1 Research is live!

Once again the wonderful Kristi Sasser has worked her magic and designed an awesome

shirt around the stomach theme. We are offering short sleeve tees, long sleeve tees, and a crewneck sweatshirt this year. They will be Gildan brand and available in Ash Gray or White. 

We will be accepting orders from now until November 30th and shirts should be ready December 14th. As always, local delivery is available in the Birmingham, Hartselle, Talladega, and Andalusia areas. We also offer domestic and international shipping using USPS Priority Mail Flat Rate fees. 

The proceeds from this sale will be donated to Dr. Perry Guilford at the University of Otago. Dr. Guilford is the researcher who discovered the CDH1 mutation and its link to hereditary diffuse gastric cancer. He is currently working on an oral medication to prevent HDGC in individuals with a CDH1 mutation, eliminating the need for a total gastrectomy. We firmly believe he is the biggest hope for Caden, Liam, and Andy if they carry this mutation. 

So how do you order? You can fill out the Google Docs Form below, comment on this blog post, comment of our Facebook post, message us through the Stomachless Sisters Facebook page or email jessica.j.sasser913@gmail.com.

We are so grateful for the success of the sale over the past two years and we know this year will be even better!!

Much Love,
Jessica and Nicole

Google Docs Order Form
The Stomachless Sisters Facebook Page

We Hate Cancer!!

Nicole, Me, and Allison

Cancer sucks! I wish I could come up with a more eloquent way to phrase that thought, but that’s the cold, honest truth. It’s relentless, uncaring, and attacks ruthlessly.

This week cancer is one again attacking our family hard. On Sunday our precious sister-in-law Allison lost her beloved grandmother to pancreatic cancer. Mrs. Christine Paris fought so hard over the past few months and it was amazing to see her family rally around to care for her during this battle. Our faith tells us that even though cancer claimed her earthly life, she received the ultimate healing and stepped into the presence of her Savior for a joyful, pain free eternity. The Paris family is devastated over the loss of their matriarch and we ask that you lift them up in prayers as they prepare to say goodbye to Mrs. Christine, a strong, beautiful woman who will be deeply missed.

Over the past two months or so we’ve also been processing the news that our selfless, caring, funny, all around amazing father has prostate cancer. Dad will undergo a radical prostatectomy tomorrow, September 11th. His cancer is of an “aggressive” nature, but with prostate cancer even the aggressive forms are slow growing, so our hope is surgery will be curative and no radiation or additional therapy will be needed. For Nicole and I it’s been very emotional; we have every hope that he’s going to come out of surgery fine and that this will just be a bump in the road, but we remember watching what our Mom went through and it’s scary to even think of the possibility of anything similar happening to our Daddy.

Nicole, Dad, and Me

Our Dad has faced many challenges in his life; the sickness and loss of our Mom, losing both his parents, too many orthopedic surgeries to count, watching his daughters go through total gastrectomies, and watching me, his baby, almost die last year. He’s handled it all with so much grace and his signature sense of humor, so we know he’ll tackle this battle the same way. He also has our wonderful stepmom Rhonda there to care for him and push him to return to normal as soon as possible.

Please lift up our family, our sister-in-law Allison and the Paris family this week. Cancer is strong, but faith and prayers are much stronger.

Much Love,
Jessica & Nicole

Pumping That Iron!

Let’s talk about heavy metal! And no, I don’t mean bands like Metallica!

We are officially well over the two year post total gastrectomy mark. When we first started planning to have our surgery in the spring of 2016 we asked numerous times about vitamins and minerals that we would or wouldn’t be able to absorb with our new anatomy. We were told by our medical team that B12 would be the only vitamin we’d never be able to fully absorb. No problem, we take a shot on a regular basis and bing, bang, boom, B12 levels stay up. One thing no one ever mentioned or prepared us for was that with a roux en y reconstruction comes an increase in the chance of iron deficient anemia.

If you have followed our story then you know we like to do things together, even subconsciously. Over the spring and summer we both started experiencing extreme fatigue. For the most part we passed it off as just a side effect of our busy lives working, chasing kids, and being involved in a million different things. Then we started having headaches, leg cramps, dizzy spells and a love for munching ice. Something was up, but we still didn’t worry much about it. Then within a few weeks of each other we had our 6 month labs to monitor certain markers. Both of our Ferritin levels (the measure of the bodies iron stores) had absolutely plummeted. The hematologist told us they like to see a number over 50, Nicole was 8 and I was 3. The nurse practitioner made the comment to me “I bet you feel like crap.” Why yes, now that you mention it, I do feel like crap. Thankfully the hematology team didn’t play around and we both did two infusions over the course of a week of an iron product called Injectafer and we’ve both felt much better since shortly after the second infusion. Now the plan is to check those iron levels every 6 weeks or so and when we see them start to fall we’ll do another round of iron infusions.

So the point of this blog post is really for our fellow “TG’ers” or those getting ready for a gastrectomy. Apparently iron deficient anemia is very common after a total gastrectomy with roux en y reconstruction. I’m not very anatomy savvy, but here’s my basic understanding: iron is primarily absorbed in the duodenum (the first part of the small intestine immediately past the stomach). With the roux en y reconstruction the duodenum is rerouted and food bypasses that area. There is secondary absorption of iron that takes place further down the small intestine, but it’s just that, secondary absorption, you’re not getting the same full effect as if it were being absorbed in the duodenum. Your body stores up iron and you usually have about a two year store, hence why ours crashed when it did. The way the hematologist explained it, we could pop all the supplements we wanted but our bodies would never absorb enough of the iron to maintain us.

So stay on top of those routine labs, listen to your body, if something feels off talk to your doctor. Luckily there is an easy fix for iron deficient anemia, iron infusions are quick, simple, and offer relief pretty fast.

So that’s our PSA for now on keeping a check on your iron. We will try to do better with our blogging as we do have some exciting things coming up! As always, thank you for all the love, support and prayers that have been poured out on us during this crazy journey. We are thriving in this stomachless life and we owe it all to God’s grace and the unending support of family and friends.

Much Love,
Jessica & Nicole

2017 CDH1 T-Shirt Sale is Here!!

We are so excited to kick off our 2017 t-shirt sale and start accepting orders! This shirt was designed by my amazing cousin-in-law, Kristi Sasser. I mean, she is seriously talented and we are so lucky she always jumps in to come up with these awesome creations! We will be accepting orders for the next two weeks (until November 30th). Like last year, you can pay myself, Nicole, Rhonda, Benny Jo or any of our other family and friends in person with cash or check or you can pay via PayPal or Venmo. We will offer shipping across the United States and all over the world again, last year we shipped to Canada, Australia, and New Zealand. Last year we sold about 150 shirts and sent $1500 to Dr. Guilford's at the University of Otago where he is working on an oral medication to kill off mutated stomach cells in patients with a CDH1 mutation, eliminating the need for future generations to undergo a prophylactic total gastrectomy. We would love to surpass 200 shirts this year and send over $2000 for this vital research. All the options and pricing info is included in the picture below, but please feel free to message me on Facebook or email me at jessica.j.sasser913@gmail.com if you have any questions. 

2017 Night of Healing

So we were incredibly honored to share our journey with CDH1 and total gastrectomies Saturday night at No stomach for Cancer's Night of Healing. Here is a video of our speech that night. As we mentioned during our talk, we believe God chose us for this and perhaps it was show others that their is hope for a wonderful, happy, healthy life after such a major surgery and lifestyle change.

What's So Special About November?

In the month of October it's so wonderful to see all the pink ribbons, pink socks on NFL players, pink hair extensions, and all things pink to raise awareness for breast cancer. Having lost our mom to lobular breast cancer, October has always been a special month for us to see people celebrate those who have battled this awful disease and honor those whose lives were cut short by it. But for the past two years the month of November has taken on a special meaning to us too. You see, November is stomach cancer awareness month.

Let’s talk about stomach cancer for a second. Most people probably don’t spend their lives worrying about stomach cancer. In fact, you probably only worry about “the biggies.” According to the American Cancer Society here are the top 10 cancer diagnosed in the United States:

1. Breast
2. Prostate
3. Lung
4. Colorectal
5. Uterine
6. Bladder
7. Melanoma
8. Thyroid
9. Kidney and Renal
10. Non-Hodgkin’s Lymphoma 

For many of these we have guidelines in place for monitoring and recommendations for how to prevent them; no smoking, wear sunscreen, limit use of hormonal birth control, etc.  An average person really only has about a 0.8% chance of being diagnosed with stomach cancer in their life. So why worry about something you have such a low chance of ever developing? Because stomach cancer is incredibly deadly. Even though the actual incidents diagnosed are so low, it actually has the third highest mortality rate. Only about 30% of patients will survive past the 5 year mark. And that’s only the stats for here in the US. Globally, stomach cancer is the fifth leading cause of cancer and the third leading cause of cancer deaths, with only about 10% of patients surviving past the five year mark.

Why is stomach cancer so deadly you may ask? It’s because most patients are either asymptomatic (showing no noticeable signs) or have nonspecific symptoms in the early stages, symptoms that can be written off as other things, like heartburn or a nagging stomach bug. For most patients, by the time symptoms occur the cancer is often in advanced stages and has metastasized to other areas of the body. What are the symptoms you may ask? Early cancers may be associated with indigestion or a burning sensation like heartburn, abdominal discomfort or loss of appetite. Advanced cancer can cause weakness, fatigue, bloating of the stomach with meals, nausea and occasional vomiting, diarrhea or constipation. More severe symptoms may include weight loss, vomiting blood or bloody stools and difficulty swallowing. Diagnosing stomach cancer often includes a physical exam, an endoscopic exam, or a CT scan. There is also a lot of research into breath tests as a minimally invasive way to identify stomach cancer.

There are several factors that can lead to gastric cancer. It is twice as common in men, so there is a thought that estrogen may aide in protecting women from the development of this form of cancer. The presence of an infection called Helicobacter pylori (aka H. pylori) is a risk factor in 65-80% of all gastric cancers. As with other cancers, smoking and obesity are also correlated with an increased risk of stomach cancer. Diet is not a proven factor, but some foods, like smoked foods, salt rich foods, red meat, processed meats, and pickled vegetables appear to be associated with a higher risk of stomach cancer. Lower rates of stomach cancer are tied to a Mediterranean diet or a diet filled with fresh fruits, vegetables, citrus, and antioxidant rich foods.

There there’s genetics. About 10% of cases run in families and between 1-3% of cases are due to a inherited genetic syndrome, like hereditary diffuse gastric cancer (HDGC) syndrome. HDGC is tied to a mutation of the CDH1 gene. This is the genetic flaw that led Nicole and I to learn so much about stomach cancer. Current estimates are 1 in 9 million people carry this genetic mutation, but these people have an 83% risk of developing HDGC. That staggeringly high number is what led us to the decision to prophylactically remove our stomachs 18 months ago. And sure enough, even though we showed no real symptoms and had just had a clean endoscopy with 40 biopsies each, we both had stage 1 HDGC. It’s so crazy to know that there was absolutely NOTHING we could have done to prevent this. There was nothing we could have eaten or not eaten, no magic pill we could’ve taken. One simple little mix-up in our genetic code and we were destined to have cancer.

It’s hard sometimes to think of ourselves as stomach cancer survivors. We never underwent crippling chemotherapy or radiation treatments. We never even knew we officially had cancer until it had already been removed from our bodies. But in the most technical sense of the word, we are survivors. It’s crazy that in this day and age, with so many advances in science and medicine, that diagnosing stomach cancer early is still so difficult to do. For those of us who carry the CDH1 mutation, we have no real option for preventative screening, life without a stomach is our only shot at warding off cancer. How insane is that?!

Hanging with our stomachless pals at Night of Healing!

We had the honor of being at the Spotlight on Gastric Cancer symposium at City of Hope in Los Angeles, CA this weekend. We heard leading medical professionals talk about advancements in therapies and surgical approaches and we also heard from patients who have fought this awful disease with extraordinary courage, people who have lost loved ones after a long battle and others who are preparing to undergo a prophylactic total gastrectomy to stop cancer in its tracks. We bonded with people who can be described as nothing less than amazing, people we’ve “known” online for almost two years now but finally got to meet in person. And we got to share our own story of the wonderfully normal life we lead now (I will share a video of our speech soon!). We left LA on Sunday with nothing put hope for the future. You see the day is fast approaching when Caden, Liam and Andy will be tested for the CDH1 mutation and there is a good chance they will have to look stomach cancer square in the face and make some hard choices. This is why Stomach Cancer Awareness month means so much to us. We desperately need advancements in screening and treatments so that our babies have better options than we did.

Later this week we will unveil our new t-shirt design and start accepting orders. Just like last year, the funds raised will be sent directly to Dr. Parry Guilford in New Zealand who is currently working on an oral preventative chemo to kill off mutated stomach cells, replacing the need for a total gastrectomy for CDH1 patients. We are so excited for this year’s shirt, they look awesome! Last year we sold around 150 shirts and sent $1500 to Dr. Guilford, our goal this year is 200 shirts.

We can’t wait till we live in a world where ALL cancer is easy to detect and cure. Until then,  every November we will rock our periwinkle to support stomach cancer awareness.