Ed Mizerk

Ed Mizerk

My story begins in August of 2018. At 51 years old, I got my colonoscopy done. They found eight massive polyps, and most were precancerous. Since I was adopted and had no family medical history, the doctor suggested a genetic test. Since I was at my deductible, I thought, why not? The results did not come in until December of 2018. The results showed that I had a genetic mutation called CDH1. Like probably everyone else in the world, I said, “WHAT? What does that mean?” I wasn’t told any more details about CDH1 at that time. A month later, I went to meet with an endoscopy doctor. My wife, Lisa, and I were quite confused about what CDH1 actually was. The doctor explained that I had a two-out-of-three chance of getting stomach cancer because of this genetic mutation. We set up an endoscopy appointment, and the doctor stated, “I almost hope we find some cancer, so then you won’t have to decide to have your stomach removed.” I thought this was an odd thing to say and walked out of the office, still thinking, ‘what is going on’?

A little background on me, I’m an extremely positive person and have never had any health issues or physical pain. Really, I am never in pain. I am often told that I am pretty much the happiest and most positive person people know. My wife jokingly calls me “unaffect-ED” because nothing really bothers me, and I have a powerful gift of not being upset, angered, or stressed.

After the endoscopy, the results showed nothing unusual, and I said, “see? I’m fine,” But the endoscopy doctor still set me up an appointment with a surgeon to talk about getting my stomach removed. So, in March of 2019, we met with the surgeon who explained the same thing: I needed my stomach removed because it was the only way to prevent me from getting stomach cancer. I was told I had some time to make my decision but was advised to make it by May or June at the latest. I personally didn’t feel that was some time. I felt like I needed to choose, and I needed to choose soon! So now, my wife and I were looking for second opinions, and my wife got a referral to a reputable genetic counselor at the affiliated hospital. I called and set up the appointment, but about 10 minutes later, the counselor called me back. She stated that their practice doesn’t know very much about the CDH1 and, between the two hospitals, she could count on one hand how many cases they had seen. She then referred me to the University of Chicago Medicine, which was doing a study on CDH1.

My first appointment with the University of Chicago Medicine was in April of 2019 and was with two doctors. I was hoping to hear something different. However, they too explained that my only option was to have my stomach removed. They told me about their team environment and how they were there to help me with all aspects of the process. They understood that it is a hard decision and suggested that I come to their conference on June 1, 2019, called No Stomach for Cancer. All the doctors would be there, as well as people that have had the procedure. This was the first time I really broke down and cried about what I had to do. I couldn’t believe I was actually sick. I felt completely fine! And what if I really didn’t have stomach cancer? I decided to put my own team together – my family and friends.

My wife wanted me to do the surgery right away, but I needed to do more research. A lot of my friends thought I shouldn’t have the surgery despite the odds of getting stomach cancer, and it being too late once it was discovered. I spoke with my two daughters, Haley and April. Both were confused, and they too felt that I should not have the surgery. They weren’t very happing when I informed them that they needed to get tested for the gene too. At this time, Haley was very close to being finished with her nursing program. She became a vital part of my small team (which was ultimately just Lisa, Haley, and me). Haley did her own research on CDH1 and came to the conference with use. Lisa and I really needed Haley because I had a tendency to remember only positive things the doctors said, and Lisa tended to remember the scarier things. But Haley balanced us out because she remembered everything, and, with her medical training, she was able to help us understand the whole picture. She is going to make a great nurse! Before the conference, Haley and I were still on the fence about whether or not I should have my stomach removed.

After the conference and speaking with my bigger team, I decided that I was going to have the surgery. It was just too risky to simply hope for the best. My daughters even agreed they needed to get the genetic test done. Was the conference important? Yes, it was. I was able to speak with people who had had the surgery and see how they were living. This was extremely helpful in showing me first-hand what my life would be like. And it didn’t seem too bad! They were all carrying on regular lives. We ate with a woman who was a year out from her stomach removal, and she just sat and ate with us like anyone else.

On August 5, I met with the surgeon, Dr. Roggin, and he went over everything. I learned that he did ten surgeries in 2018 and that he averaged about three surgeries per month in 2019. He also stated that 95% of the surgeries he performed came back, showing cancer cells in the stomachs that were removed. Dr. Roggin was very informative, and his knowledge was comforting. It made it my choice to have the surgery soon a bit easier. We set up the appointment for September 18, which was a little sooner than expected. Being a person who likes to joke around, my favorite question to ask all the doctors was, “If I have no stomach, will I be able to lose my stomach on a roller coaster ride?”. Many of the doctors thought this was a funny, but very interesting question and said that they had never been asked that before.

After I made my decision about the surgery, I made another goal: to get fatter than I ever have been in my entire life. A week before the surgery, I reached the goal. I fatted out of many pants and shirts and weighed 240 lbs. I was told that I looked like I was going to explode!

Eleven days before the surgery, I was hanging with about ten of my friends from high school. I told them for the first time that I had decided to have my stomach removed. I completely freaked all of them out! This was something nobody hears about. They asked me over a hundred questions. Then they started asking if, should something go wrong with my surgery and I don’t make it if they could have “your hair, blue eyes, your calves?” which I obliged. That was a great weekend for me. As I was driving home, I was thinking about all the questions they asked, and I think I answered every one of them. I remember thinking, ‘I’m doing the right thing.’ Five days later, I meet up with my friends again at a business party. Each one came up to me individually to let me know that I was at the right hospital, and I was doing the right thing. I was in shock that my friends did their homework and looked up CDH1 and UC.

The night before the surgery, I fattened up even more. I invited friends and family to come over and pray, but more importantly, have Portillo’s cake. My friend and pastor of my church also came over to pray with us and have cake. I always say I’m the best person to go through this because of my faith and positivity. I live my faith the following way: Love God, Love yourself and Love others. The hardest thing to do is love God and yourself; however, if you can do that, then the easiest thing to do is love others. Through this process, I struggled with loving God. I thought, ‘why me?’ Which brings me to my next way of life. One of the greatest motivational speeches I have ever seen, and still watch a few times a year, is Jimmy Valvano’s – Don’t Give Up, Don’t Ever Give Up. Jimmy V was terminally ill at the time of the speech and could barely get out of his bed that day. My favorite part of the speech is when he states, ‘to laugh, think and cry each day – that’s a heck of a day!”. And going through this, you can’t believe how true that is. I just watched it again, and it brought me to tears. It’s amazing that he needed help walking up and down the stairs to the podium. With my great support system, I have made many people laugh, think, and cry. But laughing was the focus. Jokes like “you’re going to lose your gut feeling” and “will you be able to stomach that anymore?” and mine “since I won’t have a stomach, will I still lose my stomach on a roller coaster?”

September 18, 2019, was the day of my surgery. Everything went great. It took about 7.5 hours. With the help of my wife, my family and friends were kept in the loop about my progress. Afterward, my recovery went quite well. I was back to work in 2 weeks. I met with the nutritionist, and we came to the conclusion that I was probably the healthiest patient she has seen go through this process. Eating was going great for a few weeks, but then I started having a hard time keeping food down. Me being the optimist that I am, I thought I would fight through it. But my wife called the doctor, and they had me come in right away. They needed to go down my esophagus to view the connection. It turned out that in the area where the staples connected the esophagus to the small intestine, that tissue was closing up. It was down to only a 7 mm opening, and they needed to make it larger. The ideal size was 15 mm. I went back at least five times to stretch the tissue. My last procedure was on December 23, 2019, and the opening was now measuring 16.5 mm.

During my many visits to the hospital, I got to know a lot of the nurses and doctors. A funny discover was made during these visits. I didn’t realize that I cannot open my mouth very wide, but whenever I was asked to open my mouth as wide as possible (for the purposes of intubation), every person said, “is that it?” I heard it from everyone! One of the anesthesiologists came in and actually didn’t say it when I opened my mouth. I started laughing and said, “you didn’t say it!” She said, “I was told not to.” I laughed even harder.

While at the hospital, nurses and doctors began to recognize me and would stop by to see how I was doing. I always said, “I love seeing you, but I hope it’s the last time!” I really felt, at this point, that I should have had my own coffee mug there. While waiting to go in for my last procedure, one of the doctors that I had met during my first appointment was walking by. She walked by but then stopped and came back. We started talking, and she knew everything that was going on with me. I was so impressed she recognized me and knew everything about my surgery and progress as well as setbacks. This shows me what a great team UC Medicine has. Before she left, she looked at me and said, “You’re the roller coaster guy, right?”

It has been five months since the surgery, and I’m doing great. I’m understanding my eating and have been maintaining my weight for several weeks. I have lost 65lbs and have had to buy new clothes, which is fun for my wife. I have started working out regularly again, too, and I feel very healthy.

For now, my story is ‘to be continued’. I will be answering the roller coaster question this coming summer of 2020 when I take my family to Cedar Point. I will be doing my test on my favorite roller coaster, the Millennium Force, which has a 310-foot drop and goes 92 miles per hour. All the doctors have asked me to follow up after, and I absolutely will – we’ll see if I lose my stomach again.