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