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. 

Monday, May 1, 2017

Setbacks and A Whole New Recovery

This post has been really hard for me to start writing, I think because in some ways I still cannot wrap my mind around everything that has happened in the past six weeks. Several people have asked about what took place and have seen vague Facebook posts, so I thought it’d be best to lay it all there and tell the whole story.

Our last post saw us both doing really well, we had just come back from a cruise with our families, our weight had stabilized, we were both eating whatever we wanted and living a normal life. Since that time we have actually both gone through a hospital stay and surgery. In February Nicole gave us a scare. She started having some pain in her lower abdomen and her CT scan was not very clearly showing a problem. Her lab work looked good and her pain was controlled by pain killers. But after several days of monitoring by our surgeon at UAB and consulting with our surgeon at MD Anderson she underwent exploratory surgery. Luckily, everything GI related looked great; however, her ovary was quite large and discolored, so they did have to remove it. Pathology all came back clear and after a week of recovery she was back to work and feeling like herself again. Little did we know this scare was gearing us up for the big show that would come a month later.

It really kind of began on Saturday, March 11th. I had an odd pain in my left side, right over my J-tube scar. It came on after I scarfed down a taco taking my son to baseball, so I dismissed it as gas pains. Over the next day or so the pain got worse, extending to my whole abdomen and back and causing some bloating. But it was never unbearable and by Tuesday I was back to normal. I was incredibly busy that week helping organize and run a consignment sale at my church, but I felt great. I was eating pizza, mini brownies, and running all over the place with lots of energy. On Tuesday, March 21st I woke up with the same pain in my left side and as the day wore on it became increasingly worse, I was incredibly bloated, and started having spells of nausea and vomiting. Trying to be Super Mom I loaded up my son and took him to baseball practice, but by this time it was incredibly obvious that something was wrong. My husband came to take me to the ER and a close friend came to take Andy home. We told him bye and that we were going to go see the doctor and be home that night. We were wrong.

Our first stop was to a freestanding ER center not far from our house. It’s a new facility, super efficient with a CT machine and we’d been there before when I had a GI bug and needed fluids. We figured I’d be evaluated, have a CT and some pain meds and be told to follow up with my doctor the next day. As we were there being evaluated the pain kept getting worse and worse and reached an unbearable level when I drank the contrast material for the CT. At this point my blood pressure also started to go up and up. This was alarming because my blood pressure is usually a perfect 120/80, even during labor. They gave me morphine and three rounds of Dilaudid for pain and that couldn’t even touch the pain. My CT results showed something called mesenteric swirling, which is a sign of an internal hernia or twisting of the bowel. The decision was made at that point to place an NG tube down my nose to help relieve pressure and to transport me to a hospital to be evaluated by a surgeon. And here is where a series of miracles takes place.

We were asked what hospital we wanted to go to and immediately said UAB. That’s the best facility in the state and Dr. Heslin, the surgical oncologist we’ve worked with since returning home is based there. We were told that UAB had no beds available, the ER was full, and they were diverting patients to other facilities, so we’d need to select another hospital. We asked for the second-best facility in the area for GI issues, St. Vincent’s and were told the same thing. At this point they said they wanted to send me to UAB West, a small hospital outside of Birmingham that had never seen someone like me (a stomachless 32 year old). My husband, my hero, was not going to accept this, he was making sure I got transferred to a hospital where they could properly treat me. I was in extreme pain and after all those pain meds I was loopy, so poor Steven had the weight of all this on him. After being in the ER for several hours, his phone was dead and mine was down to 5% battery. We had no clue we were going to end up in the ER all night, so we didn’t think to bring a charger. For those who don’t know, Steven is a medical device sales rep and he sells instruments used in some GI surgeries, so he has a work relationship with our surgical oncologist as well. Since his phone was dead, he recalled Dr. Heslin’s email from memory and sent a desperate email from my almost dead phone asking what we needed to do. By some miracle, Dr. Heslin happened to pull out his phone to check something and saw the email and immediately got on the phone with Steven (who had wrangled a charger from a doctor at this point) and started discussing lab results and symptoms. He also called UAB and made sure they found a bed for me and arranged for an ambulance to come and get me. We have learned that Dr. Heslin is the MAN at the UAB and if he wants something done then it’s going to happen. Shortly after getting off the phone with Dr. Heslin the ambulance arrived and off to UAB we went. When we arrived, we met with one of the residents who took more blood to run repeat labs and sent me to X-ray to make sure my NG tube was placed correctly. At this time he told us he didn’t think I needed immediate surgery, so I told Steven to settle in and get some rest. It was around 1:30am at this point and we were exhausted. TMI alert, but I want any fellow CDH1/TG friends to be aware of every symptom. When I returned from X-ray I felt like I needed to go to the restroom and when I did it was all blood. At this point I knew something was really wrong. As I was explaining this to the nurse the resident came back in and explained that my labs had significantly worsened and that I was being taken to immediate surgery. Everything moved so fast at this point, they started prepping me right then and there and Dr. Heslin came in and could only really tell us at that point that they believed my bowel was compromised. The last thing I really remember is being placed on the table in the OR with Dr. Heslin holding my hand and telling me everything was going to be okay.

Here is what we would find out. During my total gastrectomy in May 2016, a portion of my intestine was tacked up for the feeding tube to be inserted. My bowels became twisted at this spot and my superior mesenteric artery, the major source of blood supply for the intestines, had become twisted as well. What my lab work was showing was sepsis and as soon as they opened me up (and this was a full on open surgery, incision from sternum to below my belly button) they saw that my entire bowel was gray and dying. After surgery my family was told had I not made it to UAB when I did and been taken to the OR when I was then I more than likely would have died. I had around a 25% chance of survival when I entered the OR. Only a 25% chance of living. That’s hard for me to even type. I almost lost my life, I almost left my baby boy, my husband, my sister, my family and friends. It scares me so much to think about how close I was to dying. And it makes me even more grateful that my husband could keep his head clear and email Dr. Heslin during all the chaos of trying to get a hospital to take me. As soon as the bowel was untwisted the blood rushed back in and almost everything turned from gray to pink immediately. There were a few spots that stayed dark and were concerning to the doctors, so the decision was made to just close my skin incision, leave me on the ventilator in ICU, monitor my labs and take me back into surgery the next afternoon to make sure all blood supply had been reestablished and no part of the bowel had died. All of this was explained to family, but of course I had no idea, so I wake up restrained in recovery on a ventilator. Hands down the scariest moment of my life. They kept me in the recovery area most of the day Wednesday so that Dr. Heslin could monitor me between cases and later that afternoon I was moved to ICU. There was a precious resident named Lindsay who stayed by my side all day and after a while she asked if she could trust me not to pull out the breathing tube and when I nodded yes she removed the restraints from my arms. That was amazing because I could actually use sign language and write notes to my family, it was so hard not to be able to communicate. They kept me pretty sedated while I was on the ventilator, so most of those first two days are a fog to me. What I do remember is being surrounded by the people I Iove the most: my husband, my big sister, my parents, my sister-in-law Amanda, and the most amazing friends in the world, Brittany and Kim. Praise God my labs continued to improve over those two days and on Thursday afternoon I went back to the OR where everything looked great and they were able to close me up and remove the ventilator. I returned to ICU for the night and moved to a regular room the next day. I stayed in the hospital over the weekend and was able to go home that Monday evening. I can’t tell you how good it felt to be reunited with my little boy after such a scary ordeal.

Without a doubt this recovery has been much harder on me than the recovery from the total gastrectomy. I had been doing so well with eating prior to this set back, I had a lot of energy and was maintaining my weight. Now I am struggling to eat again, dealing with food aversions and what I would call extreme dumping syndrome daily. Mornings are the worst for some reason, nothing I eat or drink agrees with me, but by the afternoon (after my midday nap) I can tolerate more foods. I have lost another 16 pounds and I am literally a walking skeleton at this point. For the sake of transparency, I will also say that I am really struggling mentally too. I have nightmares of waking up tied down and being unable to speak, just like when I woke up from my first surgery. I get overwhelmed very easily and cry more than I ever did after the TG. I think the shock of it all has really taken its toll on me. We have made the decision to seek counseling with a professional who handles trauma victims to try to get past this hump. This has also been incredibly difficult for Steven and our sweet Andy. We thought Andy was handling everything well until there was a mix-up at school and his number didn’t get called during carpool, he thought we forgot him or were back in the hospital and had a complete meltdown. His teacher also told me that some days he doesn’t play on the playground, he just sits beside her and will kind of snuggle up to her. Hearing this completely broke my heart. My sweet little boy is always so full of life and loves to run and play, but there are days he just needs to sit and get extra love. He’s so much like Steven, he puts on this brave face and holds everything in until he just can’t hold it anymore. So, we’ve also decided to seek some counseling for him. He’s been through so much this past year and we want him to be able to talk about his feelings and not hold on to things that hurt him.

I don’t want to end this post on a negative note. Despite all the bad the past month has held, we’ve seen God’s hand caring for us at our lowest point. I am a firm believer that God will give you more than you can handle at points in your life and these unbearable moments are when we learn true dependency on Him. We also believe that we serve a loving God and that these things don’t happen to punish us or because we weren’t faithful enough. My husband reminds me all the time that we live in a fallen creation and we can’t let the circumstances of this world define us, we must stay firm in our faith and let God’s hope shine through us even when we’re deeply entrenched in pain and suffering. At the end of the day, I look back on that night in the ER and realize that the things of this world were lining up for me to not receive the treatment I needed and to die; however, God lined up a series of events that would get me exactly where I needed to be, when I needed to be there and ultimately I was spared. On my absolute worst days, all I have to do is look at Steven and Andy and I’m relieved to be here with them, no matter how awful I physically feel.

We have also seen a tremendous outpouring of love and compassion during this ordeal. Every need we’ve had has been met before we could even speak it. God has truly put us on a path and surrounded us with an amazing group of people who love us and lift us up in our hardest times.


Hopefully our next post will find us all healthy and in great spirits!

Tuesday, January 24, 2017

8 Month Post-Op Update

We realized it had been a while since we posted an update on our post-op progress.  In all honesty, we’ve been so busy living and enjoying life that the past few months have flown by. We each have battled some hiccups and bad days along the way, but for the most part life is normal, we just eat a little bit different than most people.

We are 8 months post total gastrectomy, which is so crazy. January actually marks a year since this process officially began. I met with the geneticist for the first time at the end of January 2016. Who knew it would lead to this wild ride?!

Merry Christmas from the Bahamas! 
So what have we been up to since our last post 4 months ago? We have been chasing kids, working, spending time with family and friends, enjoying the holidays. We even took a cruise to the Bahama’s a week before Christmas! The trip was much needed and so much fun. The boys played with dolphins, hung out at the Atlantis resort, ran all over the beach in Nassau, had breakfast with the Cat in the Hat, and played their hearts out. Nicole and I were a little worried about losing weight on the trip because we were so active, but we actually ended up eating really well and it all balanced out. It was a great way to close out a hard year.


Our boys health has kept us occupied recently too. My son Andy was diagnosed with juvenile arthritis right before Christmas, so we’ve been going through testing to try to narrow down his specific form and adjusting to weekly Methotrexate injections. Nicole’s oldest son Caden broke his kneecap in a wrestling match a week and a half ago. At first they thought his femur was also broken and that surgery might be required, but luckily an MRI revealed the damage was not as bad and for now he is just immobilized to hopefully heal the kneecap. Nicole’s house has also been hit by strep and the stomach bug over the past few days, both boys have been sick. So she’s donning masks and gloves, spraying Lysol like crazy, and we are all praying she doesn’t come down with either. Unfortunately we found out on New Year’s Day that people without a stomach can still get the “stomach bug” since it actually occurs in the intestines. I got sick that morning and ended up in the ER getting fluids that night for dehydration. Way to ring in 2017! According to the GI these things will be “exceptionally violent” in us as our intestines are more sensitive due to the amount of work they do. I had a lot of abdominal pain for days afterwards and found out it was actually from swelling that happens in the intestines when you have GI bug. Since our intestines are more sensitive and we no longer have any real fat padding in the abdomen, we will just be more aware of the swelling that takes place. So we really need this bug to quickly leave the McDonald house and Nicole’s immune system to fight it off.

Around the time of our last post point Nicole was having trouble with her incision not closing. She underwent a surgery on September 28th where the wound was cleaned out and a wound vac was placed. The wound vac was a pretty painful experience for Nicole; however, it was effective. After a few weeks with the vac on the wound started to close and it is now fully closed and healed. Nicole has also had some issues with fat malabsorption and was dealing with some sickness after eating foods with a higher fat content. She started taking digestive enzymes with high fat meals to help her body absorb more nutrients from the food and they have really helped her out. They aren’t 100% and there are times she has issues with foods, but for the most part the enzymes have made a big difference in her ability to absorb and digest food properly.

Stricture (a narrowing at the area where the esophagus and small intestine were joined) turned out to be an issue for us both. I had dilations performed in August and September for what was called a “significant stricture.” At my first dilation the area was pretty much closed off and I even had food trapped in suture wire that was left from surgery. I had a really awful reaction to the first dilation and they felt it was because the area went from barely open to wide open and it was just a little bit aggressive for my system. The second dilation went much better and I finally hit my stride eating and maintaining my weight. I was supposed to have a third performed in October, but I was doing so well at the time it was deemed we’d wait until a problem arose instead of putting me through another procedure. I started having an increase in swallowing difficulties in early December so we set-up another dilation for January 13th. Turns out it was a lot worse than expected, the area was almost completely closed again and a lot of scar tissue had to be cut away before the balloon could even be place to dilate the area. I had some issues for a few days after with nausea and reflux much like the first dilation, but it passed pretty quickly this time. I will undergo another dilation on February 3rd to hopefully prevent the drastic closure that happened before. Nicole also had some difficulty with food getting stuck and underwent a dilation on December 28th and luckily that provided some relief for her. Since strictures can be pretty persistent they are going to perform another dilation on her tomorrow (January 25th) to hopefully stay on top of the issue. One cool thing that both of our EGD’s revealed is that we are both starting to form our own little stomach pouch under the anastomosis. How cool is it that our bodies can adapt that way?!

Since we both had stage 1 hereditary diffuse gastric cancer at the time of surgery, we are being monitored every 6 months for any sign of recurrence in the abdominal area. We both have had CT’s and everything came back clean! We will repeat scans again this summer. Lobular breast cancer is the next big concern we have to face and a prophylactic double mastectomy is on the horizon for both of us. We are being monitored every six months via mammogram or MRI (we both just had clean mammograms over the past month). Nicole is leaning towards having surgery in the summer of 2018. Steven and I want to evaluate my health around the two year mark to see if another pregnancy via IVF with genetic screening is possible. If so, we will pursue that route and I will have the mastectomy after having another child. If another child not possible, I will go ahead with the mastectomy sooner.

Our silly boys enjoying a train ride to the North Pole! 
Our fundraiser we held in November was very successful! We raised over $1500 to send to Dr. Guilford’s research center in New Zealand. Around the time we sent the donation we got a really cool update from his lab. They have actually been able to grow miniature stomachs that will allow them field test the medication in the lab. Our boys may be able to bypass this whole TG thing! One of the ladies in our CDH1 group collected photos of everyone’s children and took them to Dr. Guilford’s and they are now up in the lab to remind him of why he does what he does. When we emailed him telling him we wanted to raise money for his lab, his response to us was “we are confident your children will have better options.” Talk about goosebumps! In the future we will be doing other fundraisers for his research and we hope to have the same positive response that we had to our first effort.


As we approach the one year mark it seems like our bodies are really starting to adjust to this new life. They say it can take up to three years for everything to fully settle into place, but most of the big stuff will resolve in the first year. We probably won’t post a ton going forward, just because there shouldn’t be a lot of action as far as our TG healing goes. But we will posts as milestones approach, as news and developments about CDH1, TG, or HDGC/lobular breast cancer occur, any fundraising efforts we undergo or if anything crazy happens further into the recovery process. As another CDH1 friend and blogger Marne put it “the best thing about life after TG is LIFE.” So we intend to live it to the fullest, to enjoy every moment with our families, and to offer love and support to others who have to walk this path. We can always be reached by commenting on this blog, reaching out to us on Facebook or emailing us at Jessica.j.sasser913@gmail.com or mc0826@hotmail.com

Saturday, October 1, 2016

Raising Awareness and Funds for CDH1 Research

In our last post we talked about how our focus has shifted to raising awareness and funds for CDH1/Hereditary Diffuse Gastric Cancer research. Our biggest hope is Dr. Parry Guilford, a researcher in New Zealand who is working on a drug that would be taken every 2-4 years to kill off early cancer cells in the stomach, meaning a prophylactic total gastrectomy would no longer be the course of preventing HDGC in people with CDH1 mutations. We have three little boys who have a 50/50 chance of carrying our same CDH1 mutation and in about 7 years the first of these boys will be tested to see if they are a carrier. While we are so grateful we had the option of removing our stomachs when we found out about the mutation, we obviously want better for our children. Dr. Guilford is confident in the research his team is doing and truly believes our children will have better options than we had. It takes a lot of money and time to bring a drug to market, so we want to help provide funds for this project and also let the world know about advancements taking place in this field.

Thanks to my talented cousin-in-law Kristi Sasser we have a great t-shirt designed and we are ready to start taking orders! Here is an image of the shirt and it will be on a periwinkle, Gildan brand t-shirt since perwinkle is the color associated with gastric cancer awareness. We love the seahorse image, as the seahorse does not have a stomach and sustains itself by eating round the clock, just like us! The cost for the shirts is $15 for sizes Youth XS – Adult XL and $17 for Adult 2X & 3X. For people in the Birmingham, Hartselle, Tuscaloosa and Talladega areas we can arrange a time to meet and distribute shirts, but we will also offer shipping for a flat $2.50 rate. Payment can be made to myself or Nicole via cash, check, or PayPal. We will take orders from now until Wednesday, October 19th and we will need payment to be in by that date as well. The shirts should be ready for delivery by Monday, November 7th.  You can order by commenting on this post or by emailing me directly at jessica.j.sasser913@gmail.com. Please let us know what sizes you need, if you will need your shirts shipped and how you would like to arrange payment. All of the proceeds made from the selling of these shirts will be sent straight to Dr. Guilford and his team at the Center for Transitional Cancer Research at the University of Otago.

We are so excited about our first fundraising project and hope you all love the shirt as much as we do and support this effort. Please don’t hesitate to reach out to me or Nicole if you have any questions about the shirts or ordering.

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: https://drive.google.com/file/d/0ByoYyITMwrkgekR4NTZkdktBdU0/view. 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: http://www.stuff.co.nz/national/67457475/otago-researchers-identify-drugs-to-beat-hereditary-cancers. 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!

Saturday, August 20, 2016

3 Months Post Op and Bumps in the Road

We are officially 3 months post total gastrectomy! For the most part the past month has been good, but we have each had a few bumps in the road.

Nicole has had a lot of problems with her incision. It would never fully close at the bottom and was leaking a lot. A few weeks ago she went to our Birmingham doctor to get it checked out and they found a few inches of knotted sutures that her body had not absorbed. They cleaned it out and packed it with the hope it would heal and close. Thursday the area opened back up and tissue was visible in the opening. Nicole spent all day Friday  at the UAB ER and there was some fear that an abscess had formed. Luckily a CT and blood work ruled out an abscess, but they did have to open up the area, clean out what was there and pack it tightly. She will have to keep it packed for the next two weeks and then go back to Dr. Heslin to have it evaluated.

I had finally gotten over my bad nausea spell and was rocking along and then I started having trouble eating. Whenever I would start to eat the food would get stuck and I'd have to bring it up. I was also having chest pain in the general area where the esophagus and small intestine were sewn together. A swallow test confirmed that I had a stricture, a narrowing at the anastomoses. Yesterday I had a procedure called esophageal dilation performed. It's basically an endoscopy where they use a ballon to open up the narrow area. Dr. Ahmed showed us some images after and it was definitely very narrow and my internal sutures had trapped food in the anastomoses. The bad news is that strictures tend to return several times before the area finally stays permanently open, so they want to aggressively treat me. In two weeks I will have the dilation performed again and based on the narrowing over the two week span they will determine how often this should be done. There is also a possibility of them having to place a short term stent at some point to hold the area open.

With a surgery of this magnitude I think some complications are to be expected, so we are really trying to not let these issues get us down. They are small bumps in the road and we have a great medical team working to resolve them and get us back on track.

Friday, July 22, 2016

Update: Two Months Post Op!

It’s almost hard to believe that we are 8 weeks post total gastrectomy. In some ways the past two months have crept by, but in other ways it feels like just yesterday we were in the hospital!

Life has definitely changed over the past two months, but overall it seems as if we are both starting to settle into our new normal. I went back to work this week and I’ve been surprised at how well it has gone. I have a desk job and actually work from home three days a week, so it’s really easy for me to graze all day. I’ve been a little tired by the time I reach the end of the day, but nothing unmanageable. Nicole has been able to go to school and work in her classroom some and will start back on August 5th. As a teacher, I know it will be a little harder for her to be able to eat throughout the day. Nicole and I have both had our first B12 injections and that seemed to help a lot with energy levels (B12 is the only vitamin fully absorbed in the stomach, so we will have to supplement it).

So what hurdles and issues have we faced the past month? Around the 5 week mark I did have a week of severe nausea and trouble eating. We did some tests to rule out major complications and overall the determination was that I “hit a wall” and my new set-up just needed a rest. After a few days of liquids only I was able to start adding foods back in and have had no real trouble since. I do still have small waves of nausea, but usually it’s because I am hungry and once I eat it passes. We both still have times where we either eat a little too much or certain foods don’t agree with us and we get discomfort. Usually laying down for a little bit helps this pass. Our bodies are pretty quick to let us know if we eat something that doesn’t agree with our new set-up. What we have discovered too is that one day we will eat something and be totally fine, but the next time we try it we may have problems. Case in point: I ate a Krystal chick sandwich one evening and was fine, a few days later I had one for lunch and was dry heaving in the parking lot after. Another issue we deal with is making sure we take small bites and chew well. If we don’t do that then food becomes stuck in our chest and it’s very painful, it feels like you can’t breathe and we have to go to the bathroom and get the food up. The last thing of note is our hair, which has been falling out and breaking like crazy. This is mainly due to nutritional deficits and most people say this should subside within six months of surgery.  What’s odd is how the texture of our hair has changed, my hair dresser even made a comment about it the other day. I usually have oily hair and if I don’t wash it every day it looks like I just poured grease on it, but now I can get away with not washing it every day and just using some dry shampoo. Nicole actually decided to combat the loss and went ahead and got a sassy new short-do! This is all a learning process and really every day, every week things get better.

So now the good stuff, new foods! We are getting braver and trying new things all the time. Some highlights of the past month: Reese pieces, peanut and peanut butter M&M’s, Dipping Dots, Mexican pizza from Taco Bell, cheese dip at Mexican restaurants, Subway sandwiches, Sonic cheese fries and cheese tots, shortbread cookies, s’mores (this was Nicole and she took her time, it took about an hour to finish it, but no dumping syndrome!), Mata’s pizza, and jambalaya. I still get a little nervous trying new things in public, like at restaurants, just in case it doesn’t it agree with me. Also, for both of us it seems like our weight loss has really stalled. In the past eight weeks I’ve lost 25 pounds and Nicole has lost about 10 pounds (she’s a total rock star).

We are now shifting our focus to raising awareness and money for CDH1 research. We are constantly reminded that in a decade we will be testing our children and they will face decisions if they do in fact carry this mutation. Our hope is that they have better options for screening and prevention and don’t have to go through a total gastrectomy. We are currently looking into setting up a walk to raise money for early November and will hopefully have some details on that soon.


As always, we are so grateful for all the prayers and acts of kindness that have been given to our families the past two months. Even though we are two months out, we are still very much in the early stages of healing and we know your prayers will carry us through any bad days we may encounter. Every day we are reminded of how precious life is and we are so thankful we have a chance to play with our kids, be with friends and family, and just live. Through our blog and connections in the “stomachless community” we have met several people who are actually about to have their gastrectomy surgeries in the coming weeks, so we ask that you keep those families in your prayers as well.