Imagine hearing that based on available information you have a 70% chance of getting cancer. A cancer that has a 5 year survival rate of 20%. The recommended “treatment” is to remove a “non-essential” organ. You do some research and find that 1 in 3 people who wait are diagnosed early enough to be treated with surgery. Your brother, your hero did not get the chance to make this choice. He was not one of the 20%. What do you do? I guess it depends on what organ they want to remove. In this case it is your stomach. Something we take for granted everyday. Wait… this is a non essential organ? When you think about it, there are plenty of people who do this. The procedure is the same as having gastric bypass. In this case, instead of bypassing your stomach they remove the entire organ and connect your esophagus directly to your small intestine. Does is help you make your choice? You will spend 7-10 days in the hospital and need at least 10 weeks to recover. It is an open procedure so you will have a midline scar from sternum to belly button. Let’s consider your lifestyle after surgery. You will lose  weight, 10-20% on average, maybe more. Sounds good, but remember this is not weight loss surgery. A temporary feeding tube can help slow the weight loss. You will need to eat several small meals throughout the day. This might be a challenge because your stomach makes a hormone that tells your brain you are hungry. So imagine the need to eat often but never feeling hungry. Eat slowly and chew everything well to prevent large pieces of food from getting stuck where your esophagus meets your intestine. There won’t be a sphincter muscle to help move the food. Chewing also helps with digestion. Eating this way will introduce air into your digestive tract so find yourself burping a lot. Good new is you can eat whatever you want. You will want to monitor your dietary protein to keep from losing too much muscle mass. You will need to monitor your the amount of sugar and carbohydrates in what you eat. How much is too much? Everyone is different so you will need to figure that out on your own. After a few bouts of severe diarrhea and passing out a few times from reactive hypoglycemia and you will know what your limits are. You can still drink alcohol, just be careful. Without a stomach to dilute the alcohol, it will be absorbed into your blood stream quicker and so you will become intoxicated more easily. It will be difficult to determine if you are getting enough nutrients in your diet. Assume you are malnourished and take a multi vitamin daily. You will need to take a vitamin B12 supplement as well. No stomach means your body won’t make enough intrinsic factor, which means you won’t absurd enough vitamin B12, which means you won’t make red blood cells efficiently, which means you can become anemic. Your risk factor for osteoporosis increases to 40%, so you need to take 500mg calcium supplements three times a day. You might need to sleep with a wedge pillow to prevent bile reflux at night. Your post surgery anatomy would allow the bile that normally just runs through your intestines access to your esophagus. If this happens, it burns way more than stomach acid. Aspirate even a little and it is like setting your airway on fire. Post surgery hair loss is possible, but if you are a 57 year old male, you are probably losing hair anyway. Finally, there are the unknowns. Everyone is different and no one knows how their body will respond after major surgery. Have you made your choice yet? 

Two years ago, I made a decision that changed my life. There are days I regret my choice but it is not something I can take back. Those who know me, and have seen me can tell I lost weight, about 20% of my pre surgery weight. One of the unknowns is a negative body image. I never cared before. I was overweight and happy with my dad bod. I now have a low but normal BMI, but I know I look sick. My dear friends who care enough to ask if I’m okay because of how I look confirm it. Good fitting clothes helps disguise it. I share this as one of the more personal aspects of my life. I heard on the news that the average weight gain during the pandemic was about 2 pounds a month or 24 pounds over the last year. I sit quietly and listen during those conversations because most people cannot understand how someone would want to put on weight. Early on I would eat to the point where I became nauseous. I stopped exercising to limit burning calories. Then I would step on the scale and at my highest weight I gained 3 pounds since surgery. So back to exercise and I stop eating when it becomes uncomfortable. (With the exception of last night when we celebrated Conor’s 21st birthday at Fogo de Choa. I may not get hungry, but that does not mean I do not enjoy food. It was delicious and steak is a good source of protein. So I surpassed my level of comfort.) Regardless of how I look, most days I feel really good and that is all that matters. 

 I have adapted and my life is more routine. There is a morning ritual that includes 5000 micrograms of liquid B12 under my tongue, a probiotic, a multi vitamin and calcium supplement. I typically drink a high protein Ensure. 16g of protein because if I go over 20g I get cramps. Most days I make a 1 egg cheese omelet for some additional protein for breakfast. In between meals I eat often protein bars but regular snack foods as well. Nuts are a good source of calories and protein. Fish, chicken, ground beef are staples, easy to digest. Cheese on almost everything for the added protein and calories. 

I understand my physiology enough that dumping syndrome is rare. My biggest challenge is reactive hypoglycemia. My blood sugar drops and I get weak and light headed. Occasionally I have some tremors. I lie down and a 40 minute nap lets my body reset. Recently, I have had some success with eating small amounts of simple sugar when the fatigue begins. Seemed counter intuitive at first because it was the sugar and carbohydrates that dropped my blood sugar to begin with, but 5-7g (approximately 1 cookie) seems to get my blood sugar back in 10-15 minutes. I have been lucky to only experience a few episodes of Bile reflux. Most people can relate to the pain of a burn, getting too close to a fire or touching a hot pan. Imagine that burning feeling in your throat and chest.  There is nothing to do but wait it out as it clears over the next 5-10 minutes. Bile reflux seems to occur when I eat too close to bedtime. Being aware not to eat late or staying up when I do eat later has worked so far. 

This sums up how things are going 2 years after having my stomach removed. 

One year without a stomach! First thought this morning was I wouldn’t be here without the support of friends and family. Every visit, voice, text, thought and prayer helped me get here. I am also grateful for the doctors, nurses, assistants, and staff that were there to help me through the worst of it. I have thought of them often this past year. When I started getting out of bed and walking the floor, I had a nurse who did not like to see me walk alone and would join me. At first I thought it was because I was listed as a “fall risk”. Later in the week, when she was no longer assigned to my care, she would see me walking and join me. It was just her nature. I had another nurse from the neurology floor. She was moved to the surgical floor because they were short handed and the supplies in my room and on the floor were arranged differently. She probably worked the hardest to make sure I was comfortable and laughed with me when things did not go as planned. The certified nurse assistant had to wake me several times a day to take my vitals, and made me laugh every day. I think about the 7 roommates I had during my 10 day stay and hope they are well. Most of them were not surgical patients. They cycled through my room while waiting for a bed to open on another floor. The first was admitted around 3:00 AM the morning after my surgery. I woke when they turned on all the lights to prepare his bed. The staff did not realize I was in the room. The patient was hard of hearing so I got his whole history as the doctors shouted at him. (There was no HIPPA in my room.) His wife was bringing his hearing aids in the morning. I asked about all his coughing and was assured he was not infectious. Turns out they moved him the next day because he was infectious! Initially, I was amazed by the patient who had surgery for pancreatic cancer. He was up and about working his insurance business on the phone the next day. Turns out the secret to all his energy was his hypertension. He was not being released until his blood pressure was under control and once they brought it down is energy and working disappeared. The patient who kept asking to be discharged because he had nurses visiting his house everyday to take care of him told me I should also ask to be discharged and get some home nurses. One of my favorites was the guy who came to the ER because his foot was infected. It was still healing from a severe burn (down to the bone) that occurred 4 months earlier. It wasn’t his first infection. He was telling the doctors that their treatment plan had not worked in the past and he was pleading for what he was sure would. He asked for specific antibiotics and wrapped his own wound. The doctors were trying to get in touch with the person treated him previously to confirm what he was saying. That guy should teach others how to advocate for themselves. I hope they are all doing well. To all who visited the hospital and visited me home, thank you! The only visit that concerned me was from a co-worker who told me stories and had me laughing so hard, I thought I might tear a suture. I am also lucky to work with many amazing students. They reached out to offer support and encouragement. I was gifted many protein bars, some good, some bad, all appreciated. To everyone who has been part of my life this past year, I cannot adequately express how grateful I am. THANK YOU!

I do not focus on the negative experiences, but it is important not to forget. I have described previously most of the challenges in detail and will not recap them today. While one year later, I have no complaints, it was a long year. Hours and days went by slowly. For the most part, my pain was managed well. The earliest days and weeks were not easy. There were plenty of struggles and I missed the time lines I set for most of my recovery goals. The good news is that I got here. It is important for those who will go through a similar experience to understand that recovery and learning a new life style will be challenging. Patience and perseverance are the key.

What is life like one year later? My morning routine does not vary much. I take a probiotic and multivitamin every morning. I take a liquid B-12 supplement under my tongue to prevent anemia. Five hundred milligram calcium supplement 3 times a day because my risk for osteoporosis is now around 40%. I have an ensure high protein shake for breakfast and a protein bar later. The focus on protein is to try and maintain muscle mass and some of my strength. Occasionally, I will cook some eggs, maybe a slice of bacon or sausage. Pancakes are out. Even without syrup, a single pancake can cause hypoglycemia, so unless I want to take a nap after breakfast I avoid them. I still have trouble drinking straight water. It leaves a heavy feeling in my abdomen. Like I just drank a large, thick milkshake. I often add various flavors of crystal light to my water. I stopped drinking coffee a few months before surgery and have not gone back. Crystal light adds caffeine to some of their powders so I still have that option to help on those rough mornings. RXBars are my go to protein bar. I can manage foods with less than 20 grams of protein. Anything higher in protein makes me nauseous. I often graze on something during my drive to work, peanut butter crackers or nuts. At work I teach in a 3 hour lab that is scheduled 2 or 3 days a week. Early on when I was still loosing weight, that was a long time to go without eating. It is not the hunger, I still have none, I can go days without eating. It boils down to how much I can eat in a day and trying to get enough calories to keep my weight stable. I usually eat to fulfill whatever craving I have for lunch. Often lunch is finished a few hours later as an afternoon snack. Dinners are similar. I have a few favorites because I know what is easy on my digestive system. I do not have trouble with chicken or ground beef. The family benefits when I crave steak because fillets are the easiest on my digestion. Steamed vegetables are good, but I do have occasional cravings for raw vegetables. Mashed potatoes and apple sauce are comfort foods. I usually pass on dessert. When I crave sugar, my limit is one cookie. Try to have another snack after dinner. Eating has become a routine. For the most part, I eat all the time which would mask any hunger I might have if that part of my physiology has changed. One of the more popular questions I get asked is, can I drink alcohol? The answer is “yes”. While I do not drink often, when I want to join the adults around me, I know beer makes me uncomfortable. Wine and other options are okay. Without a stomach, my intestines absorb alcohol quickly. I try to stick to one or even a half a glass of wine. On one occasion I had 2 glasses of wine which lowered my inhibitions. No, you do not get a story of me falling down drunk. You get the uninhibited consumption of cookies which I paid for later. How many people do you know who have to watch how much they drink because it might lead to eating sugar? Many of my memories from this past year revolve around food. Some bad: like plugging the first time I ate out at a restaurant and learning how to throw up without a stomach; some good: Like how happy I felt to eat a single slice of Sam’s pizza with my mom in Wildwood eight weeks after surgery. My diet one year later is fairly normal. I need to focus on high protein and low sugar. I need small portions multiple times a day. For the most part, eating has become routine. It seems ironic that much of my life without a stomach centers around food.

At 157 lbs my BMI is about 22 which is in the normal range. I know most people would be happier to see a skinnier version of themselves in the mirror, but it took me time to realize that the slighter version of me is healthy. I remember how a walk around the nurses station would tire me out and lead to the need for a nap. At home, I started with a walks in the yard or to the end of the block which also required a nap afterwards. During this “stay at home” period, most days I walk about 4 miles for exercise. The muscle mass I lost has made me weaker. I walk slower. This was most noticeable during college tours with Kiley. I was often lagging behind the group as we walked campuses. Kiley would drift back to keep me company and managed to make me laugh about it. Basic tasks around the house also remind me that I am weaker. Weight lifting is part of my exercise to maintain strength and bone mass. I go to the gym at work with colleagues. Be warned. If you join us and are not working hard enough, you will be accused of lifting “Mike weight”. I tried going back to training karate around 12 weeks into recovery. After about one month of training, I took another 8 weeks off. I could manage getting through a class but was exhausted and was losing more weight from the calories burned. Eventually, I realized that I could not put weight back on when I was not training and accepted going back to the dojo and a few less pounds. I had not thought about or planned for the change that 40 lbs would make training karate. Karate is not about strength so that should not be an issue. Being noticeably weaker meant I needed to work more on speed and focus, which were not that good to begin with. I also learned at my center of gravity has changed. Suddenly, I find myself off balance from turns and moves I have done hundreds of times. All is good because those who instruct and train with me have always been part of my support and I will continue to “seek perfection of character”. My original goal was to get myself back to where I was prior to surgery. I am not sure that goal is something I will ever achieve. For now, the new goal is to keep improving and be the best I can be.

There are so many things to reflect on from this past year, so many things to be grateful for, so many people to thank. That list will grow as I embrace Year Two!

Grey’s Anatomy, the show that gets credit for keeping applications to medical school at an all time high. The show that keeps me employed. The show that causes many medical students to realize that reality is nothing like the TV show. There are 15 seasons of this show to binge on Netflix. I personally have no desire to watch, but I will admit to watching one episode, Season 5; episode 17. It is the one that has CDH1 patients. Spoiler alert as I will recap. Briefly woven into all the drama going on around the characters, there are 3 siblings who lost several family members to Hereditary Diffuse Gastric Cancer. They all carry the CDH1 mutation and are at the hospital because they decided to have prophylactic total gastrectomy. The show does point out that with their family cancer history and the CDH1 mutation they are at a “3 out of 4” risk for diffuse gastric cancer. They also mention they all had negative endoscopes. As with most TV shows, things that usually take days or weeks happen in 1 hour, so I can forgive them telling the surgeons that they want their stomachs out and the operations happening the same day. Doubts about their decision arises when they are told the potential post operative complications. What they do not mention is weight loss, malnutrition, vitamin B12 deficiency/anemia, or calcium deficiency/bone loss. Of course, dumping syndrome is mentioned, but the deal breaker is “anal leakage”. I don’t know if this was suppose to disgust the audience or make them laugh. To set the record straight. An endoscopy and the biopsies they take only scan about 1-3% of the stomach’s surface areas so a “negative” just means, they did not find cancer and not that you are cancer free. One of the reasons the recommendation for CDH1 mutation is prophylactic total gastrectomy is because it is difficult to diagnosis diffuse gastric cancer. If you decide to have the surgery, it is likely you will have a CT scan, with and without contrast. This is another way to look for cancer, but it also lets the surgeon know if you have any anomalies in you anatomy that could complicate the surgery. Pre-surgical blood tests also on the list. One of the reasons, I respect my surgeon is that after meeting with him and telling him I decided to have the surgery, he talked to me about the procedure, recovery, and life after. He gave me some print information. Then he said, this is serious, major surgery; nothing to take likely; so I want you to think about it; we will meet again in 4 weeks and if you still want the surgery we will set a date. Not only did this give me time to think, it gave me the chance to attend a support group meeting before surgery. That meeting had my head spinning. They accurately described how awful recovery was, but they were also passed their adjustment period and all were happy they had it done. I had doubts even while I was being prepared for surgery. I guess that was one message that the show was able to relay as one of the siblings decided against surgery. It would have been nice if they dedicated an episode to focus on gastric cancer, but Grey’s Anatomy is a show about doctors not about medicine. I wonder if House ever had a CDH1 patient?

Perhaps it was fate… I wrote previously about the one small, overlooked piece of advice that I would share with others recovering from a total gastrectomy, buy a belt. For those who like to shop, you can replace your wardrobe several times as you lose weight and your body transforms. Shopping for clothes is not one of my priorities. I waited for my weight to stabilize before replacing my clothes. In the meanwhile, I learned a good belt will keep your pants up. I started buying clothes that fit after I lost 30 lbs. It was time. Most of my pants had several folds at the waist since I lost about 3 inches. My baggy shirts made me look sick. As fate would have it, I got sick on two occasions after about a week of wearing things that fit which lead to losing an additional 10 lbs, an extra 1.5 inches off my waist. That’s okay, I followed my own advice, I had a good belt. Flash forward several weeks… We fly to Atlanta, GA for a college visit with Kiley. Berry College is located near Rome, GA about 90 minutes from Atlanta. We had a nice 3 day weekend. Saw the college and got to spend time with family in GA. Back to the Atlanta airport. Security was loose, shoes could stay on and no scans. Except… I get chosen for the random screening. Shoes and belt off. Step into the scanner. TSA asks if he can pat down my left leg. This isn’t the first time this has happened. Must be something about the anatomy of my left leg that looks suspicious on the scan. All is good. I go to collect my things and… no belt! I ask the TSA agent what he did with it. He said he put it on the conveyor to be screened. They look to see if it fell off the track, they looked to see if it was stuck, but it was gone. I can only guess that someone mistook it for theirs. It was not fancy or worth stealing. It was a $15 belt. So there I was, loose pant and no belt. I only packed the sketchers that I was wearing, no shoe laces that I could tie together as a belt. I picked those shoes because they would be comfortable for all the walking on the college tour. So the image that best sums up my first year of life post gastrectomy is me walking through the airport, carry on over my right shoulder, my left hand grabbing my waist line holding up my pants, and Kiley laughing with me. And yes, our flight left from on of the furthest gates and arrived in Philadelphia at one of the furthest gates. Probably would have never happened if I had not written about buying a belt. When I think back on this past year and the more difficult challenges I like to reflect on this one. It reminds me to accept my fate and laugh a bit.

It has been a while since I put thoughts to paper. With some anniversaries passing, there has been a lot on my mind. I will begin with April 10, the one year anniversary of Brian losing his fight against diffuse gastric cancer. I can’t stop asking myself, “why him?” It could have just as easily been me. I carry the same gene mutation. So why him? To justify, I believe the answer lies in the fact that his star shined brighter. To me it was the subtle, or not so subtle, things he did that made him special. This is the guy who did not hesitate to walk through a mall in footie pajamas to have his picture taken with Santa. The same guy who brought a pie at the market and asked the baker to write “Life of” on it because it was part of his annual academy award celebration to have food items representing the best picture nominees. Someone who wasn’t afraid to laugh at himself and make others laugh. If you didn’t hear his version of his visit to the CNN building or the one about being trapped under a trashcan full of mulch, you missed out. I won’t share them here because his versions were priceless. They still bring a smile to my face.

Brian was my roommate for 17+ years. Joe, Brian and I shared a bedroom for about 10 years and Brian and I continued to share a room after Joe got his own room. We were often on the same basketball or baseball teams. You would think that during our teenage years, we would have wanted more separation but that wasn’t the case. I remember him telling me he decided to attend St. Joseph’s University and asking if he could put my dorm, Greaton Hall, down as his dorm preference. Why would I mind? I am proud to call him my brother. I am blessed to have many great memories growing up with him and Joe. Many of those college memories I keep to myself, not because Brian would be embarrassed, but because Brian would tell the stories better.

When I think of Brian, I think about how important family was to him. I will share one story for now, but as I think back on this day, I wish Brian were here to tell it. Conor and I met Brian and Matt at Great Adventure one summer. We had a fun day going on on rides. Brian suggested that Conor and I ride Rolling Thunder. This roller coaster existed when we were teenagers, a wooden coaster over 30 years old and riding it you could tell. I should have known when Brian said he wasn’t going on but Conor and I went on anyway. The first roller coaster I ever road where part of the scare was feeling that the tracks might break while you were riding. It shook the fillings in my teeth and banged us around good. I commented about how awful the ride was when I got off and and Brian smiles and says, “I know. That’s why I didn’t go on.” He could have said, “You don’t want to ride that.” What he knew was that the nostalgia of riding that roller coaster one last time was still worth it for me and he was right. That was Brian, subtly making things happen.

I grew up admiring my brothers, Joe and Brian. As the middle child, I thought I was suppose to be an example to my younger brother, but I wanted to be much more like him. He excelled at many things. He was the best at engaging people in conversation. He would have made a great late night talk show host. The questions were always about your life and what you are doing. Many of my memories are watching him interact with Conor and Kiley. It was never just, “so what have you been doing?” It was always followed by a series of questions or “Tell me more about that.” Years ago, I was waiting for a flight at Philadelphia International Airport. Jim Gardner, the 6ABC news anchor was waiting for the same flight. He was engaged in a conversation with an elderly couple. I could not hear the details of the conversation, but I could see from Jim Gardner’s mannerisms that he was interviewing this couple. Their life story was important to him. That was Brian when he spoke with you. Your life story was important to him.

As the one year anniversary of my total gastrectomy approaches, I will share other stories. For now, I will say that everyday I’m reminded as I take my supplements that my life has changed. I don’t worry about my CDH1 gene or diffuse gastric cancer thanks to Brian. He is and always will be my hero. Over the past year, I have cried many times. Several times a week, recently. I miss him. While his stories live on and make me laugh, I’m reminded that he is not around to share them. The beauty in life is that I never know when some random life event will remind me of Brian. The smile and tears battle. It doesn’t matter who wins. Brian is with me.

This whole thing started around this time last year. Brian asked Joe and I to stop over because he had something he wanted to tell us. That something was that he knew the cause of his stomach cancer. He tested positive for a CDH1 gene mutation. He layed out all the information regarding what is known about developing cancer if you inherit this mutation. He also mentioned that the recommended treatment option is a total gastrectomy. I distinctly remember two thoughts. First, not to worry because I know I did not inherit this gene. Second, even if I did, there is no way I am having my stomach removed. Who would do such a thing? Very few people knew what was going on. I did not want to get into the “I might have…” conversation. So I tested and awaited the results. You know how that went. And in hindsight not a big surprise. Growing up I often heard how much I resemble my mom. Guess I got more of her genes. Anyway, I stayed quiet. I needed an endoscopy and colonoscopy to make sure my GI tract was healthy. Up to that point I did not discuss any of this.

When I decided to go ahead with the surgery, I still was not sure how to tell people. I spoke with my kids separately. Kiley was not happy that I was “keeping a secret”. I explained to her that up to that point there was not much to tell. I would not have been able to answer any of her questions if I had told her what was going on in the early stages. I remember telling family/cousins about this after Brian’s funeral. Almost all were there and by that time we knew the inherited pathway was from my mom’s family and they did not need to worry or be tested. Colleagues at work was a different story. I knew I would need to take a medical leave of absence so I needed to tell them and make plans for my responsibilities to be covered. My first attempt was to play it off. I told a co-worker that “I was tired of the extra weight and I decided to have my stomach removed”. The response was something like “Are you serious?”. “Well, not about the weight but yes about the stomach removal”. It got easier after that. Just get down to the facts. “I inherited the same gene mutation that my brother had. This puts me at risk for also developing stomach cancer. Since there are no good screening methods and no good treatment options, I am following the recommendations and having my stomach removed”.

I remember participating in a group panel in which we were sharing with students some difficulties in our lives that we had to overcome. Hopefully, helping students realize that the path to success may not always be smooth but they should endure. I was relating the long and sometimes obstacle filled path that I took before I landed my current faculty position. I honestly did not feel I was contributing much to the panel because my colleagues were relaying some serious life challenges. All the while, I was asking myself, “Is now the time to bring this up?” I did not, because at the time the event was being organized, I had not made a decision to the surgery and still had more questions than answers. I was not ready to share. Inspired by the stories of my colleagues, I did manage to share with them in private what was going on in my life. From there I made it clear to those I spoke with that it wasn’t a secret, they could share with anyone who asked but I was not going to make a broad public announcement.

The reason for this post is that this is one topic I have not seen discussed. When to tell. How to tell. I decided that the topic may be too sad (for lack of a better word) to post updates on Facebook or other ways. I created this blog for anyone interested in following along and being updated. I have had a few people ask me about my weight loss not knowing the background. My favorite was “You look good, but are you okay?” and “Were you trying to lose weight?” Still not the most comfortable in telling the story. “The weight loss was not intentional but it was expected. I had my stomach removed because I carry a gene mutation that put me at a high risk for developing stomach cancer.”

One last story… Kept to the end for those who are reading. I promised Kiley “no more secrets”. That she would know everything going on as soon as I did. I kept that promise. Unfortunately, I did not know what my recovery would be like after surgery and as best as I tried, I did not prepare her well. The lack of energy and the weight loss left her with the impression that I was not doing well. She related the weight loss to that my brother experienced. When I realized she was worrying in silence, we had a nice talk and I reminded her that I would keep my promise. I am not sure it helped much. What did help was time. She saw that I was getting stronger. I would fall behind the group walking during some of her college tours. She eventually would laugh when I would say that it is all good, “I am just walking in the cancer lane. It is a little slower.” And recently, we were out shopping and got stuck behind two people who walked even slower than I do. Guess the recovery continues if you can walk faster than people who are younger and probably healthier.

So keep the secrets as long as you need to. When it comes time to reveal, I have no answers. Highlighting the facts seemed easiest. Then answer questions as they come. I did what I thougth best. I tried to tell those closest to me in person before the story spread.

It all started about a year ago. The journey continues…

It is the holiday season, and like most of us I am concerned about gaining weight. For those that may be slightly jealous of relative ease at which I can lose weight, don’t be. The struggle is real. In November my work schedule changed. Teaching labs run for 3 hours and interviewing applicants for our program can also run for 3 hours. Since I had been feeling good and have energy, I was not thinking that 3 hours without eating is a long time for me and my new physiology. Interestingly, it was the fact that I felt physically thinner that got me back on the scale. During the week surrounding Thanksgiving, I somehow managed to lose 8 lbs. What concerned me was my BMI of 20. Still “normal” but closing in on “under weight”. What caught me off guard was how it made me feel. I realized that I am still at a point where I have to work everyday at eating regularly. Having 3 meals in a day is psychologically comforting but not an option. The work situation was an easy fix. I take breaks during labs to eat something. I always have a protein bar in my pocket so if I get caught in a long meeting I can eat something. I almost always have my water bottle with me. It is usually filled with some flavor of Crystal Light since straight water still causes discomfort. Most of my coworkers know my situation and that it is not my intention to be rude eating in a meeting. For the past 2 weeks I focused on getting calories every hour or two. I am hoping that my body adapts because this schedule means I am often nauseous or uncomfortable. I stopped the cardio exercise to limit burning calories. I need to work this back in not just for the physical benefits but the mental boost as well. The good news is that over a 2 week period, I was able to gain 6 lbs back. What I learned from the last few weeks is that there was a part of me that thought “recovery” would include getting back to my pre-surgery lifestyle, but life changes.

Happy Birthday, Brian! I would give anything to say that to you face to face, but life is not fair. You would have turned 56 today. I typically go through my days focusing on eating but do not think about being stomachless, gastric cancer or CDH1. I think of you everyday, but today is different. I cannot help but be sad. You saved my life and I am forever grateful.

One of the groups that I belong to on Facebook is CDH1 Gene Mutation. Many of the posts are inspiring stories of people who are pre or post total gastrectomy. Following along for the past few months I realized that there were not many posts that described a more open and realistic view of what one might expect, so I decided to post the following…

YOUR JOURNEY WILL BE UNIQUE! I’m grateful to everyone who shares their stories of success and setbacks. I have been motivated, encouraged, envious and jealous of the amazing experiences that many of you have shared. What follows is simply my story. I am covering a few topics that I see few posts on. Some of you may not want to read the negative experiences that follow. My intent is to be open, so that those of you who have challenging moments know that you are not alone.

PAIN! Let’s begin with “I was not brave!” (And that is okay). I have been told I am.  I don’t argue, but it is far from true. I learned that I had the CDH1 mutation in January, had and endoscopy and CT in February and a total gastrectomy at the end of April. Things moved quickly as I watched my brother lose his battle with diffuse gastric cancer. Waiting to be wheeled back to the operating room, I decided that it didn’t make sense to remove a perfectly good stomach and I should just leave. Timing and anesthesia prevented me from acting on my doubts. When I woke post-surgery, my first thought was “I’m alive.” My second thought was “OMG, what have I done?” The pain was horrible. On the 1 to 10 scale it was a 10. For me it slowly improved over the next 2 hours as the fentanyl epidural and morphine took effect. After that first day I consider myself lucky, I only needed Tylenol to manage the discomfort of spending so much time in bed. I had a nasogastric tube for 4 days which made swallowing uncomfortable and often painful. I had trouble managing feeding through the J-tube. Flushing the tube was painful because it would stretch my intestine. Being patient and flushing the tube slowly reduced this to minor discomfort. The worst pain in my life was experienced approximately 6 days after surgery. I started on a feeding tube about 3days after surgery. I had not yet had a bowel movement and this continued over the next 3 days. I started experiencing nausea and pain which went from about a 3 to an 11 (yes, this one goes to 11) in about 30 minutes. While my doctors were uncertain as to the source of the pain, I was confident that my intestines were fully distended. It is a closed tube and nutrition was constantly being pumped in with nowhere to go. I convinced my doctors to turn off the feeding tube and the pain began to subside about 20 minutes later. I also convinced my doctor that a suppository would not hurt me and had further relief about an hour later.  I suppose my point is there will be pain. You will get through it. You don’t have to be brave. Stay strong.  In reality, you can’t fully prepare for what you will go through. Your experience will be unique. Just be mindful that relief and recovery is coming.

CRYING! I hope I’m not the only one (if I am, that is okay). I lost track of how many times but a few are memorable. There were plenty associated with watching my brother battle his diffuse gastric cancer. Then there was hearing that my genetic test results indicated I carried the CDH1 gene mutation. Several rounds associated with post-surgical pain.  My daughter’s FaceTime call from her prom while I was in the hospital, since I wasn’t home to see her (some tears are happy). Learning my son inherited the CDH1 mutation. Several weeks after surgery, I began experiencing nausea and abdominal pain. I thought it was associated with my gastrectomy. Turned out to be a kidney stone. The pain became intolerable early on a Sunday morning so I went to the emergency room. After checking in at the desk, I sat down in the waiting area and began bawling. I couldn’t handle the thought of being back in a hospital. These are a few examples. Overtime, there is less crying, so for any of you feeling the need, my recommendation is cry away. 

I AM A CLUTS! I will just share one example. First day home; the doorbell rings; it is the nurse to walk me through operating the pump for my feeding tube. I stand, and the end of the feeding tube gets caught on the edge of the seat and I’m in immediate pain. It subsides quickly and I have no trouble with the nurse’s instructions and hooking myself up. I can feel the discomfort of the supplement distending my intestines.  I stand to say goodbye to the nurse and notice my shirt is wet. The feeding tube was partially displaced when it got caught. The sutures were still in place so the tube could not be replaced without opening up the incision. We decided to go without the feeding tube. I suspect I may have had more energy and recovered quicker, but it all worked out in the end. So, if you are clumsy, like me… that is okay.

GOALS! Everyone in life should have goals. I was told it would be good to set goals for my post gastrectomy life. Based on what I read and heard, I thought my goals were realistic, not overly aggressive.  I’m here to say I MET NONE OF MY GOALS (and that is okay). We can start with the goal of being home in a week. My struggles with eating, feeding tube and infection led to a 10 day stay. Weight loss… I was hoping to level off at 20-25 lbs. I’m down 40 but holding there.  I was hoping to catch up on leisurely reading while recovering. In reality, I had trouble focusing for the first 6 weeks after gastrectomy and could not recalling what I just read. I tried to return to mild exercise around 10 weeks post-surgery. My fatigue led to me waiting another 6 weeks before trying again. This time with more success. While I missed every benchmark that I hoped to achieve during recovery up to this point, I remain focused on my goals. I have made noticeable progress and I’m happy to be active and work towards increasing my strength and stamina.  

DIET! The one thing that bothers me most is reading posts regarding a anyone telling you what they can and cannot do. Yes, too much sugar will send you into dumping syndrome, but how much sugar your body can manage may be different than what works for me. The first nutritionist that saw me told me I would be on a feeding tube 24 hours a day for the rest of my life. I was 2 days post-surgery, and didn’t have the strength to educate them, so just thanked them for stopping by. I go back to my first comment… “Your journey will be unique!” No one will be able to tell you what your post gastrectomy life will be like. I have no hunger. I went 3 days without eating when I had the kidney stone because of nausea and still no hunger. I eat often and enjoy the tastes and flavors. I am constantly looking for new options that give me high protein, low sugar (but still has calories) and does not taste like cardboard. Like many, water gives me some discomfort. It will be up to you to decide how much you want to explore options. I can eat a scoop of vanilla ice cream. The same volume of cookie dough ice cream will result in dumping syndrome. My blood sugar levels drop after eating a pancake (no syrup). What’s up with that?  Mashed potatoes and applesauce are wonderful but I crave variety. So take chances.  Introduce foods slowly or in moderation. Don’t let anyone dictate what supplements to take; kids vitamins, adult, chewable, liquid, gummy; you will need to figure out what works for you. Your doctors, nurses, nutritionists have a wealth of knowledge, but they have no idea what will work best for you. So let us know what works for you. Keep sharing your experiences. Your posts help all of us learn.

GUILT! I mentioned my son inherited the CDH1 mutation. My daughter is 17 and has not tested yet. Their lives are forever changed and it is my fault. We had no known family history of diffuse gastric cancer prior to my brother’s diagnosis. My son was 19 when he learned the results of his genetic test. This was 7 months after I learned I had the CDH1 mutation. Understanding that I had no knowledge of our risk factors for diffuse gastric cancer at the time my children were conceived does not change things. Don’t argue. Don’t try to explain why my feelings are illogical and irrational. When it comes to your family, in this case my children, logic and rational thinking does not apply. I have guilt (and that is okay).

HOPE! I chose to be open about some of the reality that accompanied my total gastrectomy and living with a CDH1 mutation. This is already too long and there are more topics I could cover. Do not misinterpret this as negative. It is just my story. The truth is this whole experience has taught me a lot about life. I said that I am not brave, and that is true, but I am strong. I made it through some tough times, but I was never alone. Family and friends have been with me the entire time. Taking care of me when needed, encouraging me, telling me I looked good when I knew it was not a good day, they were the reason I pushed through every day. I am truly blessed. I am coming up on my 6 month anniversary since my total gastrectomy. My life is wonderful, and I hope it is for all of you!

Another experience from the end of August that I did not post. As an update, my vocal strength improved with practice…

Part of my job involves teaching in an auditorium with up to 270 students present. In the past projecting my voice over the low rumble to get a class started has never been a problem. I could easily shout above the conversations even without the microphone. Last night was my first class of the fall term. Even with the microphone, I found it challenge to project my voice. An unanticipated side effect and weakness that I need to work on.