November is Stomach Cancer Awareness Month
November is Stomach Cancer Awareness Month, so I thought it was fitting to share our story of my husband’s experience with the CDH1 gene mutation. In this post, I share an interview with the Beetin Genes sisters on Life After a Total Gastrectomy: The Spouse’s Perspective. Beetin Genes are two sisters who both tested positive for CDH1 and are motivating others with genetic disorders. In this interview, I share intimate details I have rarely discussed publicly about our life before, during, and after my husband’s total gastrectomy.
In this post, we cover the following topics:
- How We Discovered the CDH1 Gene and its Connection to Stomach Cancer
- The Ethics of Genetic Testing and the Difficult Decision to Remove His Stomach
- Preparing Your Home and Family for a Total Gastrectomy
- Recovering from a Total Gastrectomy
- Depression After a Total Gastrectomy
- Eating After a Total Gastrectomy
- Healing After a Total Gastrectomy
- Other’s Opinion About Prophylactic Measures to Prevent Stomach Cancer
- Nutrition and Energy After a Total Gastrectomy
- Advice to Spouses of Total Gastrectomy Patients
- Digestive Enzymes and Probiotics After a Total Gastrectomy
What Led to My Husband’s Total Gastrectomy
Before we jump into the interview, let’s give a little background on how we got here.
In February 2015, we received news that rocked us to our core yet revealed our strengths and weaknesses, but most importantly…our unwavering faith. My husband’s brother researched the rare cancer their mother passed away from called Hereditary Diffused Gastric Cancer and its connection with the CDH1 gene mutation. This gene is the indicator for HDGC; if you’re a carrier, your probability of developing the cancer is over 83%. When a parent carries the gene, the offspring also have a 50/50 chance of carrying it.
His mother was diagnosed with HDGC, which spread to esophageal cancer, when she was 48. Since HDGC hides in the stomach lining, her death was preceded by her diagnosis just a few months prior. In addition, his maternal grandfather passed away from HDGC when he was 50.
Genetic counseling facilitated testing specifically for CDH1, and we both underwent genetic counseling before getting tested. Andy tested positive, leaving him with a high probability of meeting the same fate as his mother and grandfather unless we take progressive and rapid preventative action… Having a total gastrectomy, removing his stomach in its entirety.
Making the decision was incredibly difficult, and I can’t say I was entirely on board at the beginning.
But seven years later, after a BRUTAL recovery, he is now in the best shape of his life, mentally and physically! His perspective and gratitude are infectious and so inspiring! He’s also a beautiful example of strength and bravery to our kids. Not only that, but to watch the love of your life risk the unknown with such a drastic change, so they can raise your kids together and grow old together? It’s the most selfless expression of love to our kids and me!
Interview With the Beetin Genes Sisters, Taylor and Polly
How We Discovered the CDH1 Gene and its Connection to Stomach Cancer
Taylor & Polly: Hey everyone, we are Taylor and Polly from Beetin Genes, and today we are interviewing Jennifer. This is the first time we’ve talked to somebody who is the spouse of somebody who has undergone a total gastrectomy. We’re so excited to talk to her and hear about her experience, journey, and feelings toward everything.
Taylor & Polly: We’re so excited to talk to you and get the spousal perspective. This is important because we’re both married and will eventually go through it. I think it’s vital for the spouse or the partner to understand what all of this entails and that it’s not all roses. A couple of weeks ago, in the symposium with NIH, they talked about how that’s lacking in their education involving the spouse.
Jen: Nobody in our circle of influence had ever heard of it or dealt with it, not even the doctors here in the area where we live. When he returned, I wanted him to have a local team of doctors that kept an eye on everything, but we had nobody. It was a vulnerable feeling… it gives me goosebumps just thinking back. I felt so exposed. It would be best if you had a community. I wish we had dug deeper into this community, and I wish we had found you guys because I think it would have helped us both.
Taylor & Polly: You’re right. I don’t think it was as big as now because he had surgery seven years ago. At that point, we found out that we carried it, but there wasn’t much. There were only 100 people in the NIH study at that time.
Jen: We connected with some people who had blogs in Australia and the UK. Countries outside the U.S. seemed way more open to doing something prophylactically and talking about it.
Taylor & Polly: So, why don’t you take us back seven years ago when Anders had surgery, but before that, when he discovered CDH1? It was his brother who found out initially, correct?
Jen: Yes, it was his brother. It was 2015, around in there. At the time, his brother complained to his then-wife about stomach pains. His brother was very close to their mom, and he watched his mom deteriorate fast. She was diagnosed in April and died in June.
As you know, HDGC is found in the stomach lining. So, it had spread to her esophagus undetected. That’s the hard part about that cancer. She knew she was off, but all the doctors were coming back, “You’re fine.” Kind of like, it’s all in your head. It’s incredibly difficult to watch somebody you love to lose that much weight. You know something is wrong, but nothing comes back definitive. His brother had more of a front-row seat to all of that. We had been married a couple of years and had already moved to Montana. His brother felt like a lot of us do as kids and young adults; We feel like we’re going to end up like our parents, whatever the case may be. He always had it in the back of his head, and his stomach started hurting. I think he was stressing himself out thinking he had cancer. His wife at the time asked him to get tested and do something about it. His brother tested negative, and that’s when he called Andy.
The Ethics of Genetic Testing and the Difficult Decision to Remove His Stomach
Taylor & Polly: Wow, and how did you feel about him getting tested? Were you on board?
Jen: We have five kids, and I had six pregnancies. With every pregnancy, when it came time for amniocentesis, I always thought, “I don’t want that information.” Everyone is different, but I didn’t want to know. I just wanted to have my baby. This scenario felt similar. I would rather not see if he had it because I just wanted to live life, and if there is an 83% chance he’s going to have cancer, then there is a 17% chance that he won’t get it. My God is big. Even if you had a 2% chance of not getting it, God is enormous and could still do miracles. It was a real struggle with my faith. If we go in this direction, is that going against my faith? It was a strange time and a hard battle for me.
Moreover, a big part of his story is that he’s always struggled with depression. At this point, we had been married for 20 years and weren’t in a great place. His depression had a lot to do with it, so in my mind, I was thinking, “You’re going to get tested, and if you find out you’re positive, how are we going to survive your mental health?” Just remembering that moment gives me goosebumps. This was bigger than what we could handle and scared me to death. How would he work through all of this, knowing what he struggled with?
So, we wrestled and fought.
Taylor & Polly: That’s smart of you to think about that because I didn’t even think about how my results would affect me. I just thought I’ll get tested…whatever it is…it is, I didn’t even consider how it was going to impact me. Not at all; we didn’t at all. But then, when it came back positive, our world’s ended.
Jen: I get it. At the time, our kids were 13, 12, 10, 8, and 7. I struggled but then took my struggle away from Andy because it’s Andy’s body; it’s his decision in the end. So, I took my fight back to God and wrestled with Him for six months. I mean knockdown, drag-out wrestling match.
Taylor & Polly: And this is after you found out that he was positive, or before he tested?
Jen: This was before he even tested.
Taylor & Polly: Okay, yeah, because it’s almost like God has your life planned out, and you would rather not interfere with what he has for your life.
Jen: Yeah. So, ultimately, it was like, all right, this is his body, and I can’t argue with his passion for ensuring he’d be able to grow old with the kids and me. He’s now so victorious, and his heart…oh my gosh, his heart is gold, you know? I couldn’t argue with that.
Taylor & Polly: Yeah, that’s the hard part when you have kids. It’s this whole new layer on it.
Jen: Yep, And then you layer on the 50-50 chance of them getting it. That is a different interview.
Taylor & Polly: So, you finally talked to God and decided it’s Andy’s decision to do this.
Jen: Yes, he got tested, and we both had to undergo genetic counseling. We had to do some Zoom interviews and make sure we were ready.
Taylor & Polly: Oh, that’s nice! I didn’t get any of that. I spit in a cup and sent it away.
Jen: It was with Shodair Genetics Laboratory. They required that before they did the testing.
Taylor & Polly: That’s impressive.
Jen: I think it’s essential because imagine if someone (not that we’re mentally stable, LOL), but imagine if someone wasn’t. A lot plays into your recovery, and we now know that.
He got tested, and it was positive, and I was devastated. He was devastated, but we both realized we needed to pivot and reframe quickly. You don’t stay in that; you can’t stay in that headspace very long. So, we pivot.
Another interesting piece of this tug-of-war was my request to drive to Seattle to see specialists and get second, third, and fourth opinions. We live in Montana, so Seattle is an eight-hour road trip. We left on a Friday night after work and drove over with our two youngest. Not only that, but we got hotel rooms and met with specialists on Saturday morning. They said, “No doubt you need to do a total gastrectomy,” and I would say he’s wrong…LOL…so we’d go back again. We did this for four weeks in a row. After meeting with four specialists, everyone agreed that Andy needed to have his stomach removed. So, I gave up that fight, and we scheduled the surgery.
We had people praying for us, and our oldest came, along with Andy’s brother. The two of them hung out in Seattle during the surgery and recovery. We thought the fight of our life would be a successful surgery because it’s a big deal.
Preparing Your Home and Family for a Total Gastrectomy
Taylor & Polly: Yes, so before the surgery, how did you prepare? Your home and your kitchen? I want to know what you prepared. Was it the right thing to prepare? Or can you not prepare?
Jen: Right. Gosh, I wish I had this excellent homemaker answer for you. You need to prepare thoroughly. I think you can, for the most part, if you’re like you guys… You’ve figured it out better than we did; juicing, gardening, and having food canned is a big deal. But even then, you don’t know. I’m certain, like you guys, we read things where people had feeding tubes for a year or had no feeding tubes. Everyone’s story was so different, so we didn’t know what he would need. It was such an unknown. And with the craziness of having five kids in that age range, we were trying to get them all organized at my parent’s house. I don’t even know if we thought about life after.
Taylor & Polly: How long were they with your parents while you were with him in the hospital?
Jen: I want to say it was a good three weeks
Taylor & Polly: Oh, that’s a long time away.
Jen: We might have pushed four weeks.
Taylor & Polly: Did you get to see the kids during that time?
Jen: No, we face-timed with them. My oldest was with us, and I had a friend who lived in Seattle. So, Andy’s brother and my son stayed there while Andy and I stayed in the hospital for a week. Then he recovered at her house for the following weeks. The doctor didn’t want him to return to Montana even after a week because so many complications could arise.
Recovering from a Total Gastrectomy
Taylor & Polly: When he came out of surgery, was he awake and aware?
Jen: He had a tough time. He had a really tough time. His body was unhappy, and I don’t remember the issue with his heart rate. The pain was very intense. That first hour when I was allowed to see him in post-op was scary, no doubt about it; it was so frightening.
I think he told you guys he beefed up before. When we look back on pictures, we’re like, you DID beef up. So, he had many reserves… I don’t know if it works that way, but he had many reserves to work with. But it was crazy; I saw him get tinier and tinier every day.
Taylor & Polly: Did the hospital in Washington have him eating right away?
Jen: Nope. His doctor gave him a feeding tube. His surgery was done laparoscopically, so he didn’t have a big scare. It was all these tiny holes, and they gave him a feeding tube. A feeding tube specialist came to his room and showed us how to get the cans and connect everything. The funniest part of all of this is that I hate bodily fluids. Even though we have five kids, I was the mom (I’m still the mom) that said, “It’s bleeding? Okay, your dad gets home in about four hours. I’m not touching it.” If someone throws up or if someone spits, and I have four boys, so you can imagine… I hate bodily fluids. It’s gross to me. LOL!
So, here he is with a feeding tube and in so much pain. He’s the love of my life; I fell fast in love with him when I was 17 years old…it rocked my world. I was not prepared for that at all.
Taylor & Polly: Seeing him in that state of being unwell. Like not recognizing him?
Jen: Yeah. Seeing all of his muscles slowly go away and then him being in constant pain at the beginning. He was in continuous frustration; I’m sure there was some pride in there. His pride was hurt; he’s a fighter and just so determined. That can be good and bad, you know?
Depression After a Total Gastrectomy
Taylor & Polly: Did his depression come back during that time?
Jen: Yes, so if we fast-forward… I think he told you guys this story. He was at work and went upstairs because he worked at a hospital and had the GI doctor yank out his feeding tube because it was so painful, and it kept reminding him that he was sick. And the mental part of going into a hospital healthy and choosing to leave less than, like you left part of yourself in that hospital.
Taylor & Polly: Moreover, he got his results and did not have any cancer cells that probably affected you if you wanted to avoid doing it from the beginning, right?
Jen: It didn’t affect me like, “Oh my gosh, why did we do this?” It was more like we both knew he would get it, and whether it was there or not at that point, it’s whatever; we did what we needed to do; there were no regrets whatsoever.
Taylor & Polly: And you’d want it that way. You want to avoid finding anything. It would look different. You’d be doing chemo and who knows what else.
Because you didn’t like bodily fluids, what was your role when he was recovering at your friend’s house, not even in your home environment? What was your role like during those first two weeks?
Jen: A caregiver. It was all caregiver. It was a beautiful thing. Not only that, but it’s almost like you can compartmentalize your roles, you know? Like, “I am a caregiver right now and will handle all bodily fluids, feeding tube, etc.”
Taylor & Polly: Oh, you did it?
Jen: I had to. LOL! I had no choice.
Taylor & Polly: I thought maybe you asked your friend
Jen: No, no, no, no, no, that was my job. It was honestly a whirlwind looking back. He’s very independent and stubborn, so he did much of it on his own. Interestingly enough, he always had GI issues since we had been dating and married, so diarrhea and all of that weren’t new to us.
He recovered, and then we headed home. After the recovery, we felt like, okay, you did it! But the most challenging adjustment came out of nowhere while adjusting to his new normal. He would get sick and have gas. It would smell terrible. I don’t know if people ever talk about that, but it was so bad for him. That was his reality; he would be on the couch, moaning in pain. He just had to get through it.
As a mom, I always feel like it’s my job to keep the energy positive in the house, and after a while, his energy was affecting everyone. This was his reality, but it wasn’t their reality. Energy is a real thing, so when someone we all love is in so much pain, it alters the whole house. All of a sudden, it felt like there was a dark cloud over us.
Taylor & Polly: Oh yeah, right. I can see that.
Jen: I tried to be gentle and asked if he could lie in the bedroom and shut the door. Furthermore, I didn’t want him not to feel supported, but this wasn’t their reality. Oh, man! That was tough, you guys. I don’t even know how to explain; It was tough.
Taylor & Polly: The kids didn’t understand. Did you guys tell them about all of it?
Jen: Oh, yeah.
Taylor & Polly: It was scary to watch that, knowing it could be a potential reality for them.
Jen: Yes! That was a tricky part. Even last week, he was having tons of pain and now knows… this is seven years later… to go lay down. We know he needs to get through it. He’ll lose all color in his face during dumping syndrome, and we can recognize it now. During recovery, his eyes would darken, almost black, and his face was sunken with no color. I didn’t even recognize my husband at a certain point. It was scary because you know he wasn’t getting proper nutrition. The feeding tube provided some, but it was another difficult thing to overcome when he was introduced to solid foods. How will his body respond? Everybody’s different. We read so many things about what to avoid. He would avoid those things and still get sick. We always joke that you don’t know when his intestines will go on strike. Like, “We’re done!” Even if he ate something yesterday that did OK, you never knew if that same meal would cause him pain the next day.
Eating After a Total Gastrectomy
Taylor & Polly: Was he preparing his food at this time, or was that you who was?
Jen: No, no, he’s good at that. I’ve never prepared his food. He’s remarkable. He’s always been a better stay-at-home mom than I am. Likewise, he can open the fridge and figure out what to make. I’ve never had to do that for him.
Cereal is one thing that gets him every time, so he can’t eat cereal. But you know how the human spirit is… When you can’t have something, you want it even though you know you’ll pay the price. He can eat steak and potatoes. When we go out on date night, we’ve learned to split dishes, which is suitable for both of us.
Once he was healed physically, it was a tough season for us because he felt less than. He felt guilty. He felt like he had brought massive disruption to our house and such an intense situation to the kids’ lives. Not only that, but he was guilt-ridden and wondered if he should have done it. He questioned if he had made a mistake… Just beating himself up, which sent him into an intense depression.
Taylor & Polly: That will make me cry because that’s what I’m afraid of.
Jen: If you’re aware of it and have loved ones around you, take it one day at a time.
Taylor & Polly: Was it something that you were constantly like, “Okay, kids, we need to talk to you?” Was it constant communication between the seven of you about how everyone was feeling, or did you try to stay happy and move on?
Jen: We took it day by day because the reality was that I still had to make money. I still had to get the kids to sports and school. My reality couldn’t stop. If we stopped and talked about this all the time, we’d live under the bridge because none of us could make money. LOL! So, you can only talk about it so much, and the reality is that life has to go on. There was a point a year after the surgery where I was like; I’m done hearing about it; I’m done talking about it. We always said we wanted to avoid walking around and have “smoke and ashes” around us from the fire we walked through.
Taylor & Polly: You didn’t want it to be your whole life like it revolved around it.
Healing After a Total Gastrectomy
Jen: Yes! And I think for him, he had to go through that depression. There was a time when he was suicidal when he thought we would be better off without him. It’s such a lie, and we know that, but we were also not doing good in our marriage. The constant tension was overwhelming. We joke about it today, but I remember thinking, … No, let ME take you out! It’s not funny, but that was the reality of his recovery.
We thought the physical surgery would be the hardest, but it wasn’t. It was the aftermath. I needed to fall in love with this new man again, physically and emotionally. We needed to find our new normal; what does that look like? But the bottom line, which is why he is always so positive when he talks about it, is that he wanted to show the kids how you can overcome this surgery. The likelihood of one, two, or three of our kids having this same surgery is pretty high. Do you want them to look at you like, “Oh My Gosh, I would rather not do it because look at how miserable daddy is?” No, you did this so that you could stay around. There’s no crystal ball; there could be a car accident…there are no guarantees, but you can remove that risk. You did this so that you could be present. So, what legacy do you want to leave?
And now, that is his platform. “I am victorious through this!” And Polly, that’s why he is so optimistic about it because he’s still here! And he’s now one of the most fit you guys I’ve seen, and he’s so confident. He has a depth about him that he never had before, which I always prayed for. This whole journey has developed a beautiful character in him. It’s beautiful. He’s victorious, so now the kids can look at that… they’re all teenagers now, and of course, they’ll be scared, but they won’t look at it thinking I would rather not do what daddy did. Instead, he’s such a beautiful example of strength for them.
Taylor & Polly: He came out a better man after all of it.
Jen: Only so many parents are willing to lay down their life for their kids. I only know a few that would do what you’re going to do, Polly. It’s just not common, and you’re doing it for them. That makes him attractive as a wife because it’s just beautiful, you know? It’s so beautiful that a man would be willing to sacrifice his physical appearance, like a piece of him is gone, for his kids, so they don’t have to live without their father.
Taylor & Polly: Moreover, to be that excellent role model if they needed to go down that path. That’s a big drive for me. I don’t think I would otherwise.
So, did he seek therapy or counseling, and did that help him through it? I know that the vagus nerve and your gut have a lot of serotonin in them, and that just in and of itself can be harmful to someone who never struggled with depression.
Jen: Absolutely, and it’s your second brain.
He went to therapy. He went through a lot…and a ton of journaling. That’s why I said, coming out on this end, the man you see today? He’s up at 4:30 every morning and working out in the basement. He journals every single morning. Not only that, but he is so disciplined because his life depends on it.
Taylor & Polly: And what about you? Did you have to get counseling?
Jen: You know, I never got counseling, but I probably should. I have strong faith, and I tend to talk out my issues. Journaling, hiking, and the gym are gigantic parts of my mental health. But I think everyone could use therapy. I tell my kids that I will save up for therapy for them and not college.
You know, we also faced plenty of opinions about his decision.
Other’s Opinions About Prophylactic Measures to Prevent Stomach Cancer
Taylor & Polly: Oh, I’m sure it doesn’t just come before the surgery; it continues, so how do you guys deal with that?
Jen: For the most part, now, we don’t even care. Those people don’t matter. I mean, everyone matters, but their opinions don’t. They’re not in our life, and even if it’s close family, they don’t understand the hours of research we have done… you can’t explain that to a loved one. You can’t explain that to someone on the internet. You can’t explain it in a 10-minute run-in at the grocery store, how you arrived at this decision. There’s no way you could try to explain it to somebody.
Taylor & Polly: So, I guess you say it’s personal.
Jen: Yes, it’s personal, and it’s something that we feel like we were supposed to do. You don’t even have to justify it.
Taylor & Polly: You don’t. Yeah, my in-laws don’t even talk about it. It’s a mute subject. It’s awkward… something so life-changing for me, and they won’t even mention it.
Jen: If you lose a baby, you don’t want people to tiptoe around it. But you want people to talk about it and ask you about it. People are scared to ask me, “How does Andy eat?”
Marriage and Intimacy After a Total Gastrectomy
Taylor & Polly: So, how is life today? Are you still struggling with the whole thing?
Jen: No, not at all. We’re so healed… it’s remarkable. God used what could have taken us out to strengthen us individually, his character, and our marriage. It’s honestly never been better.
Marriage is about constantly recommitting to that person, the new person. We don’t get the luxury of staying in love with the person we fell in love with. That’s not how it works. It’s the commitment of recommitting to the new person. It’s like I had this unknown man with whom I fell in love. He’s not the same physically, but I now love this new man.
It’s so good because we don’t have smoke around us anymore. We don’t have ashes around us anymore. Yet, we can share our story from a victorious platform and encourage others because it doesn’t matter whether it’s a total gastrectomy or a double mastectomy or whatever. It’s adversity, and we can all learn from each other’s adversity, whatever it is.
Taylor & Polly: Exactly… that’s beautiful.
How long did it take to get to that point? You said that he changed physically. How did that affect your relationship as far as intimacy goes? How long did it take for you to introduce that back?
Jen: It was tough because intimacy is a big part of our marriage. And we don’t shy away from talking about it on social media. I don’t remember the date, but I will never forget it. We were in Whitefish, Montana, on a business trip, staying in a hotel room. He had his feeding tube out, and we had not been intimate since his surgery, and I was scared to death. The man who held me before surgery was so muscular and strong…it makes me sound vain, but since we dated, he was always very into working out, which was attractive to me. But that night, the man who hugged me in that hotel room felt utterly different. His body was soft and felt tiny. His muscle tissue was spongy, and I could feel his bones when he held me. I thought I would hurt him, which psychologically messed with me. Intimacy for me has to feel safe, and I felt like I was trying to make love to someone I didn’t know.
Taylor & Polly: That’s so sad.
Jen: It was sad. I have pages in my journal written about it. I just bawled. Not only that, but I was grieving losing the man I married. I let go of that and had to say goodbye to whatever the new normal was…which is so stupid. None of us have a normal, but I had to say goodbye to whatever our normal was, and I had to grieve and go through the healing process. I surrendered myself to God and prayed that we would be stronger than ever on the other side. But the process from here to there sounds exhausting because you’re still trying to raise kids, make money, and pay bills. Life doesn’t stop.
Taylor & Polly: That is a lot for you to take on, and it’s good that you allowed yourself to grieve. Were you open with Anders about how you felt about that?
Jen: We’ve been married so long that he knew… he could feel it.
Taylor & Polly: Did he feel that way, too? Like less manly?
Jen: I think he did. But you know, fast-forward, and I can’t keep my hands off him now, so it’s such a beautiful process. It just strengthens your marriage. You have to be committed to the process. It’s not going to be overnight. Anything that is beautiful and worth building is a long-term commitment.
Taylor & Polly: Absolutely.
Jen: And everybody’s situation is different.
Taylor & Polly: Right, it is so different, and they’ve learned so much about CDH1 and gastrectomy in just the short time since he’s had surgery.
Nutrition and Energy After a Total Gastrectomy
Jen: Which is so encouraging. We flopped through his recovery. We were alone with no team to confide in and ask if this was normal. Because every day, I would ask him to call his doctor to ask if something was normal… “Are you supposed to be throwing up? Are you supposed to be in this much pain?” There was no one to reach out to.
Taylor & Polly: Didn’t you have a nutritionist working by your side?
Jen: He tried to find one, and they had never worked with a total gastrectomy patient.
Taylor & Polly: So, how many years did it take from his surgery to feel himself again?
Jen: It was about three years, so that would have taken him to 2018. It was all good after that…life found a new normal. He still gets sick now and then; sometimes, his energy levels aren’t where he’d like them to be. Great supplementation changed everything for him.
Taylor & Polly: What about you, however? Are you ever like, I want him to go on this long hike, but I know that he’s not going to be able to keep up with me?
Jen: In the beginning, yes, I would do it alone, but now he can kick my butt in anything. He will do my long hikes with me and honestly run circles around me.
Taylor & Polly: But you were okay with that in the beginning?
Jen: Yes, it’s a bit challenging initially because you want your man to be a man. LOL! But you know it’s temporary, and at the time, I remember thinking, well, if this is what it is, this is what it is. We have him here; that’s what matters, so we reframe and pivot.
Taylor & Polly: Have to get back to the basics.
Jen: Yes. We must get back to the why and let go of any expectations. That’s marriage 101, but you have to get rid of your expectations and go with it because as much as I struggled as the spouse, I can’t even imagine how much he was struggling.
Taylor & Polly: And then Taylor and I wondered about cooking and prepping food and how
That has changed for you as far as your eating habits. Do you emulate him? Are you snacking more along with him and eating smaller meals?
Jen: Nope. I probably should, but I eat four meals a day anyway. We always ensure we get protein, healthy fats, some carbs, and tons of veggies for each meal. We haven’t changed much. He just barbecued some steak the other day. Today, seven years later, nobody would know that he doesn’t have a stomach if they came into the house. He might not eat as much, but nobody would know.
One of my favorite memories is when we first had tequila to celebrate after his surgery. It hit him so hard. He was on the couch, and the color drained from his face, and he just sat there staring at the TV. I could not stop laughing… I said, “Oh, we’re going to have fun with this! You will be such a cheap drunk!”
That was one of my favorite memories because we could take a serious situation and laugh at it. We just needed that pressure release, too.
Advice to Spouses of Total Gastrectomy Patients
Taylor & Polly: Right? Humor is always a good thing.
Do you have any advice for other spouses or partners going through this journey? What is one thing that you want to leave us with?
Jen: I would have someone to talk to because when you hold it all in, like that night in the hotel room… I felt such guilt. Not only that, but I felt shallow and had so many emotions. It started to build up anxiety and stress until I was able to call some trusted girlfriends to talk to privately about it and pray with me. They committed to praying for Andy as well.
Digestive Enzymes and Probiotics After a Total Gastrectomy
Taylor & Polly: That’s fantastic advice.
Did this experience branch you into this lifestyle of health with the supplements?
Jen: Yes. My previous company was skincare, and when I saw him struggling…his eyes were dark, and he had dark circles under them; we knew his reserves were depleted, and he wasn’t getting proper nutritional absorption.
I was introduced to a nutraceutical company by my girlfriend, and we put him on their best-selling multivitamin immediately; I saw color come back to his face. I noticed his mood lightened, and I saw a brightness in his attitude. And honestly, there’s no better guinea pig than someone without a stomach. If it works for him, and he can absorb it, it works. People had offered and sent him stuff, and we would see it a day later still encapsulated in his stools. So with this one, we knew right away that it was getting absorbed properly, and that is tough to find. That takes a lot of chelation and bioavailability and words we won’t talk about. Not every supplement and vitamin is created equal.
Taylor & Polly: Yes, there is something to those digestive enzymes Anders sent me.
Jen: Even the probiotics are spore-formed and designed to survive the stomach acid, which he doesn’t have, so they work in the intestines where it counts and has been phenomenal for him. So combining those two things, the digestive enzymes and the probiotics, are just lifesavers for him. He can use the enzymes daily for maintenance, but then he also uses them on an as-needed basis.
Taylor & Polly: I’m so glad we got to talk to you because I know many people out there will struggle through this experience. Thank you for being open with us.
Jen: Absolutely! Let’s stay in touch! I’m so excited about what you’re doing here at Beetin Genes!
You can find Taylor and Polly on their YouTube channel, Beetin Genes.
I am a coach, writer, and speaker.