Monday, September 10, 2018

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

Wednesday, September 5, 2018

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

Wednesday, November 15, 2017

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 if you have any questions. 

Tuesday, November 14, 2017

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 is 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. 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.

Monday, September 25, 2017

17 Months Post OP and Another Surgery

It’s been 17 months today since our total gastrectomies. We’re both doing great and loving life more than ever! Last time we updated, I was about to undergo a prophylactic total mastectomy.   As you may recall, Jessica wrote that I had several suspicious spots show up on a breast MRI in July. The doctors then ordered a mammogram and an ultrasound with biopsies. The mammogram didn’t pick up anything suspicious, but the ultrasound showed even more spots that the doctors were concerned with. All of the post op biopsies came back benign, so even though the doctors encouraged me to go ahead with the procedure as a precautionary measure, I wasn’t too worried that they would find anything in the pathology. On August 15th, my doctor called me with the pathology results. My right breast was completely clear and all pathology was benign; however, my left breast was a different story. She explained to me that everything was still in the precancerous stages, but that I had a couple of different issues that most likely would’ve turned into cancer. I had Multifocal Lobular Carcinoma in Situ (LCIS) and atypical lobular hyperplasia (ALH). I also had fibrocystic changes including stromal hyalinization, duct hyperplasia, apocrine metaplasia, and columnar cell change. Now, I’m not exactly sure what most of that means, but my doctor keep saying, “I’m just so glad we decided to go ahead and do the surgery when we did.” I am too! She couldn’t believe that none of this had been found in any post-op testing or biopsies. I was exactly 36 years and 3 months old at the time of my mastectomy. I didn’t even realize until after surgery that my beautiful mother had been diagnosed with the lobular breast cancer that took her life when she was 36 years and 3 months old. I can’t help but think she’s had a hand in this whole process. I can’t even begin to imagine how if would feel to be my very age and diagnosed with terminal cancer. Although she lived a very short life, she touched so many people and through her death, she has saved our lives and the lives of many family members.

Me & Jessica at my first post mastectomy check-up!
I had my surgery on Aug. 9th and my recovery has gone amazingly well. I went back to work at about 3 ½ weeks post op and have had very little pain throughout the whole process. I had expanders placed during surgery and started the expansion process two weeks later. I’ve had five fills so far and they have all went well. There is some burning and tenderness for a few days following the fills, but nothing unbearable. I go once a week for expansion and they add about 60 cc’s of saline at each appointment. The exchange surgery is currently scheduled for Nov. 20th. I only plan to be off work this time for one week. Throughout our journey with CDH1, the diagnosis, the surgeries, and the recoveries, the one thing that has helped us the most is knowing there are others out there like us that we can call on when we have questions, concerns, or just need someone to talk to. We have made many stomachless friends and they have helped us so much along the way. One of those friends, Mary Lemusu, also has a blog called Mummy Without a Tummy. She lives half a world away in New Zealand, but we both had our mastectomies on the same day. We  have checked in on each other regularly over the past couple of months and it has been so nice to be able to communicate with someone that understands exactly what you’re going through. If you’re just beginning your journey, I encourage you to reach out to others through online support groups, Facebook, the No Stomach for Cancer website, and other blogs to connect with others who carry the mutation. Although it is a rare mutation, these groups are full of others like us that are more than willing to offer support and guidance throughout your journey.

As always, thank you for your prayers and support. Please look for our next fundraiser to help support Parry Guilford’s research in November which is also stomach cancer awareness month. We plan to do another tshirt sale with a new design. We will post that information on our blog and on the Facebook pages soon. Also, we are so excited to speak at No Stomach for Cancer’s Night of Hope at City of Hope Cancer & Research Center in Los Angeles, CA in November. Please keep us in your prayers.Thanks for your continued support!

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.