“How will you eat?” and Other Frequently Asked Questions Answered

I’m going to try posting a lot in the next couple of weeks in order play catch-up. I want my blog to be up-to-date and cover every piece of the journey so it can be relevant and relatable for others in my situation.  With that being said, here is one of the most relatable topics for my fellow soon-to-be-stomachless friends: the questions.  

Q: “NO STOMACH?! HOW WILL YOU EAT?!”

 

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Real Answer: The most simple way to explain the anatomy of the surgery is this: I will still be all connected in there. After the stomach is removed, my esophagus (the place where food goes after you swallow) will be connected to my small intestine (the place where the partially digested food from the stomach goes). Over time, my small intestine will stretch, creating a pouch-like pseudo stomach. Before that happens, I will eat many tiny meals throughout the day and will have to be careful about sugar intake. While it will be different than before, eating will most definitely still happen. 

Hanna’s Answer upon the 500th time hearing this question: Every week, I will check myself into the hospital and I will be given an I.V. which contains all the necessary nutrients for human survival. I will never eat or poop again.

Q: “OMG you will be like SOOO skinny, won’t you?!”

A: It is predicted that a T.G. patient will experience weight loss of about 20% of their total body weight. During the 5 days directly following the operation, no intake of food or drink is allowed. For the next 2 months or so, eating hurts. Some people never have feelings of hunger again. So yeah, weight loss is a thing.

Disclaimer: Whether or not your friend/family is going to “look really hot” after her T.G. should not be a concern of yours. Please get your priorities in check before asking this question and pissing the patient off, okay? This is serious business, not a modeling audition. Also see: “Will you have a big scar?!”

Q: “WILL YOU HAVE A BIG SCAR?!”

Real Answer: Although as of recently, doctors are able to do the surgery laparoscopically (mimimally invasive), my surgery will be done by Dr. Sam Yoon at Memorial Sloan Kettering hospital in New York. He is the same doctor that operated on my father and did a wonderful job. He does this procedure as an open surgery. He is also the best surgeon in the United States for T.G. I’m going to stick with that and deal with the scar. 

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Hanna’s Answer: A major internal organ is being removed from my body. Yes, asshole. 

If you are a friend/family member of someone who is having a total gastrectomy, please, please, PLEASE use no stomach for cancer (link right here) as a resource to educate yourself about the procedure a little bit. It really means a lot to me when friends who have taken the time to learn about it can talk to me about more than how I will look afterwards, or can even step in once and a while and answer questions for me, (something my friend Shannon has already taken the liberty of doing on one or two occasions. Thanks, girl.) 

Happy learning, people! 

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I have the mutation. What now?

The day I moved into my junior year apartment at University of Hartford was when I got the call from my genetic counselor that I had the gene mutation. My mom had left the campus minutes before my phone rang. I had been waiting for the call for weeks now and so we all knew it would happen any day. While Devanshi was talking, I was thinking to myself “What about the others?” and “It’s better me than them.” I wrote down as much information as I could with the nearest writing implement (a green crayola marker), asked her as many questions as I could come up with, and got off the phone.  I told my family, and in return, received the terrible news that my brother and sister had the mutation as well.

Luckily, one of my best friends, Allison, was planning to visit that same night. She has been with me every step of the way and it was a relief to know one of my people from home would be able to give me a hug in a few short hours. In the meantime, I unpacked my stuff with a few sporadic breaks for sobbing, self-pity, and melodrama. Then I contacted my closest guy friend at school who naturally, reacted in a different type of panic after receiving my cryptic text stating simply, “Paternity test results are in: It’s a girl!” After explaining on the phone that he was not fathering anyone’s child, but instead, I was making a joke pertaining to the inheritance of my father’s rare mutation, my poor friend was very sympathetic and rushed over to give me a hug.

As soon as Allison showed up, I was in party mode. The test was positive, but I’m getting it taken care of this summer. In the meantime, I should give this stomach a run for its money! That night, I drank more than a person should ever drink in one evening. The next morning, I made the wise decision to keep my alcohol intake the same as before I got my test results. After all, the point of this whole ordeal is to not die young.

In the following months, I tried to relax, but was experiencing anxiety-induced stomach pains and indigestion. (If I have learned one thing from this, it’s that I am more like my dad than I originally thought possible.) To help with the anxiety that I was experiencing, I began to self-medicate with marijuana. (For all of my family members reading this, it’s legal in 2 states already. Get over it.) Weed helped with a lot of the physical pain I was experiencing and silenced the constant negative thoughts running through my head. For all of you who have just found out about your gene mutation, I recommend grand daddy purp to help with your stress (Is this bad?). But really, I think that with our rare circumstances, we can deal with the emotional toll however we please.

I have loved eating for as long as I can remember, but something about knowing that in a few months, your stomach is being cut out of your body, makes eating even more of an important ritual. With this mindset, it was inevitable that I gained a substantial amount of weight upon finding out the bad news. After a few months of the “don’t-give-a-fuck” diet, I realized that fat is not a good look for me. Knowing you’re going to lose weight in surgery is not an excuse to make yourself obese. You have to be as healthy as possible going into the gastrectomy, so my advice to my genetically challenged readers is to eat A LOT of really well-prepared, delicious, healthy food. I have lost most of the excess “I-feel-sorry-for-myself” weight since winter break and I am feeling much better. And god damn, is exercise a great stress-reducer!

A few of my school-friends and I have dyed parts of our hair purple in an attempt to mimic the stomach cancer awareness periwinkle color. Then when people would ask us about our hair, we would educate them about the CDH1 mutation. The plan was more effective than I thought it would be; the entire girls’ rugby club knows what’s up with my DNA. (Thanks, Bec!)

Right now, it feels really great to be away at college dealing with this. While it was tough at first, I think that reaching out to my friends and being open about my problem has helped tremendously. The classes, studying, and homework can be stressful on its own, but if nothing else, serves as a distraction from having to think about my personal issues. Now, in the beginning of February, everything’s out on the table, I’m feeling healthy again, my siblings and I just got clear endoscopy results (YAY!), and I am far less stressed about the reality of the situation. My roommates and I joke daily about how next semester in school, I’ll be saving money on alcohol and food, and spending it on adult diapers. (You know, shit happens.)

Intro & A Bit About the CDH1 Gene Mutation

Hey. I figured I would dedicate my first post to educating people about the gene mutation that has been passed on through my family for generations. Most of the people that will be reading this blog, I assume, are not sharing in my genetic woes. Many of my friends are knowledgeable about my condition to the extent that they realize I will no longer have a stomach, and that they can start feeding me pudding – lots of pudding – about 2 weeks post-op. If you are those friends, let me just say right now: thank you in advance, pudding-bringers! However, if you have a genetics-related cancer risk, or are planning to get a T.G. and have somehow stumbled upon this site, HORRAY! I hope that my blog can help you with your journey in some way, and I will try not to make it sound too horrible.

About Me. My name is Hanna. I am 20 years old and am currently studying to be a physical therapist at the University of Hartford in Connecticut. I am halfway through my third year of school, with plans to suck it up and serve four more years in the American education system to get my doctorate. I have two younger siblings; a brother, Jake (18), and a sister, Maggie (16). (These two will be getting a post of their own later.)

About CDH1. In August, Jake, Maggie, and I found out that we all have the same mutation on our sixteenth chromosome. The mutation affects one gene on that chromosome. In our case, the fucked-up gene is called CDH1. This happens to drastically affect our risk of getting a few different types of cancer. Hereditary diffuse gastric cancer (HDGC) is a specific type of stomach cancer that is much more difficult to detect on an upper endoscopy (stomach cancer screening test). This means that the cancer is most often detected in the later stages, and by that time, not much can be done. Having the mutation means that we all have an 85% or higher lifetime risk of developing this kind of cancer. We also have an elevated risk of colon cancer and Maggie and I have an approximately 40% chance of developing lobular breast cancer (and guess what: that’s hard to detect, too). So, this summer the plan is for Jake, Maggie, and me to all have total gastrectomies (our stomachs removed). After that, at age 35, I will begin to have regular colonoscopies and MRI breast exams. Snazzy, right?

If you are looking for more information about this gene mutation, I suggest you check out Karen’s website http://www.nostomachforcancer.org

A Family Affair. In 2004-ish, my family caught onto the fact that something was up with us. My great aunt Nancy was extremely sick and no one had any answers as to why she was losing so much weight and declining in health so rapidly. When they were able to test her blood, they told us about the gene mutation. Nancy was adamant that the rest of the family be tested so that she could be the last one that would have to die that way. Unfortunately, she was not; genetic testing was not for everyone in my family. Finding out bad results are productive for some, and for others, it creates too much anxiety and decreases the person’s quality of life. My dad was one of the family members that did get tested. He also is the type of person with a low tolerance for stress. (But lets be honest, who wouldn’t be stressed about learning you have a 90% cancer risk at age 40, when the age of onset is 40?!) He found out about the mutation in August 2007 and had his stomach removed in September ’07. In the weeks leading up to the surgery, my siblings and I literally had to be sent away to live with my grandmother because my parents were both just too stressed out for us to be a part of the mix. After his surgery, my dad was back in the game earlier than anyone expected. Being a still-experimental procedure at the time, no one knew if he would ever eat an actual meal again. They definitely didn’t predict that he would be hitting up the McDonald’s drive-through on the ride home the day he was released from the hospital. He ordered a cheeseburger. The fact that he had an appetite was a triumph for all. My brother, sister, and I all knew that at some point, we would have to be tested for my dad’s mutation. Now that we know we have it, we all know that we must have our stomachs removed. The system my siblings and I have in place is “All or Nothing.” My mom loads us up into the minivan and shuttles us to hospitals where we get our procedures done together. First, we had a consultation with our genetic counselor and were tested for the mutation. Next, we all got put under anesthesia together for our 1st round of upper endoscopies. And this summer, we’ll be shuttled to New York City where our stomachs will be removed! Goodbye 85% risk! No stomach, no cancer.