Blogging is a great way to reflect on where I’ve been, where I’m at and where I’m going.
At this phase in recovery, a lot of people around me in life don’t realize I don’t have a stomach. And when I do mention it, I feel like I’m weird for even having said anything. Lately I’ve been trying to figure out how to explain my circumstance when necessary in the ‘condensed elevator speech’ version that doesn’t make me or them feel so awkward.
So a few weeks ago, I was lucky to be able to attend No Stomach for Cancer’s Spotlight on Gastric Cancer event in Philadelphia with Dr. Parry Guilford as the keynote speaker. It was an awesome conference with great insight into the future of the medicine for CDH1ers. I learned about a possible future cancer prevention pill which would attack mutated e-cadherin. This means that in 15 years, CDH1 mutation patients could keep their stomachs and live!!
I got to meet my fellow stomachless blogger Rachel and her energetic stomachless mom!!
On the way, a lot of people from Houston were flying to Philadelphia for the larger conference hosted by the American Cancer Society. I’d bet most people heading there were researchers or worked for the pharmaceutical companies.
When a man on the plane asked me a simple question, here’s how the conversation went:
…
Him: “Oh, why are you going to Philadelphia?”
Me: “I’m going to a gastric cancer conference.”
Him: “Oh, are you in research?”
Me: “No.”
Him: “Oh, then you’re a doctor!”
Me: “No, actually I’m a patient.”
Him: Look of astonishment, turning to feeling a bit awkward for having asked the question.
…
I am fairly young. I consider myself to look pretty healthy, somewhat athletic, and maybe too skinny. So when people see me, they don’t think I look like someone who had cancer or who is missing a stomach. How do you explain your circumstance to people who feel your physical appearance is incongruent with what you’re telling them?
Here’s conversation two, as I was picking up my young son from after-school care:
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Son (while nonchalantly playing with a toy): “Yeah, my mommy doesn’t have a stomach. Yeah, she had it removed so she could have me.”
Older girl classmate: Look of absolute confusion. Looks toward the teacher for an explanation.
Teacher: Look of even more confusion. Looks at me, looks confused back at the confused girl, looks at my son who thinks everyone knows you can live without a stomach.
Me: Awkward laugh.. “Yes, he’s telling you the right thing. I don’t have a stomach. I had my stomach removed. It wasn’t so I could have kids though”
Teacher: Still confused. “What?”
Some silence
Me: “It was because of cancer.”
…
I don’t feel like I had cancer. My gastrectomy got all my cancer out before it became a problem. It was curative with no chemotherapy. I don’t feel like I can “claim” I had cancer, but quite frankly it seems to be the simplest explanation that most people can get their head around. And everyone knows that cancer sucks.
And the conversation I have at work every week or so. Most stomachless folks will smile as they read this because I’m sure they can relate.
….
person: “Can I come to your desk to discuss XYZ topic?”
me: “Sure thing. I’m here.”
person (sees remainder of food I need to finish at some point): “Oh, I’m so sorry. You’re eating. I can come back.”
me: “Oh no!! Just ignore the food. I kind of just eat all day. I promise it’s not a problem.”
…
Maybe I’ll get better at explaining my circumstance as time goes on, but for now it’s just a bit strange when it comes up.
Onto regular life, as I continue to supplement iron multiple times a day (with vitamin C to increase absorption), my strength continues to grow. I’m able now to work out 4 days a week, and I think I’m holding to gaining weight. (Yes, my scale actually broke, and I haven’t replaced it.) The current routine I’m trying out is an attempt to include my love of running with some more strength classes. I run 5-6 miles 2x a week, then take a bodypump class and a boot camp class (which is more like athletic conditioning). I can tell I’m gaining muscle strength; I don’t have a trainer to tell me what I’m accomplishing in body composition, but I can tell. And during my workouts, I can tell that my strength is growing. I’m able to lift more, sprint harder, complete the entire class without feeling like giving up. This is a great place to be at now. I’ve notice my growing strength is really helping my running pace again, much to the chagrin of my running friends who have to push to keep up with my increasing pace. Haha!!
My regular pants from before my gastrectomy fit me again. 6 months post surgery, I had lost so much weight and muscle mass that I was swimming in all my clothes. Now I feel like I’m back!
On the food front, a blog commenter Jeff mentioned I focus on food more now. I’d have to agree. Ironically, my gastrectomy has made me more appreciative of good, quality foods with lots of flavors. If you can eat good quality proteins, add all the flavorful elements and feel good afterwards, it’s a big win! You appreciate everything that tastes good, makes you feel good and stays down. Not many people have had to go through an extended phase of not being able to hold food down, so they can’t quite appreciate what it means to eat food and keep it down.
On the life front, I’m happy. My CDH1 diagnosis focuses me on what truly matters in life. I don’t think about it everyday, but it sits in the back of my mind. It gives me a good reminder to push away what doesn’t matter. I strive to strike the right balance between God, family, my health, and work. So long as I keep my iron up, I seem able to keep up, although a bit hectic at times. I try to remember everyday to build up the people around me and remember they too have a story. People and true relationships matter. And everyone has a story.
One final note to articulate just how everyone has a story. I met some new folks for a group run last week. One guy was faster, so we ran ahead for a great run!! I chat while I run and got onto the subject of not having a stomach. (The good thing about distance running is I had plenty of time to explain my story!) We were talking about genetics, its link to cancer, medical protocol and more. As we were talking, he mentioned how odd it was to hear my story. He then proceeds to tell me that his mom was diagnosed with esophageal cancer many years ago. She was told she would live 1.5 years without surgery, but with surgery could live 3 years. He pushed his mom to have the surgery because he wanted his mom with him for the full 3 years. After the surgery, his mom had so many complications that she passed away within one year anyhow. He felt guilty. He said, “I think about my mom a lot when I go running.” I said, “Yeah, I understand. I think about my dad a lot when I go running too.”
Everyone has a story.
Marne, Thank you for sharing your experiences about explaining to others. I will share some thoughts soon. Gratefully, Frank
This post made me laugh, its easier for me to tell baristas I have diabetes as the reason for sugar-free, I get less questions that way. You have to tell me all about your trip to the conference! Maybe I’ll have to try and make my way out there next year and join you guys! Glad you are doing well!
Marne,
You are right! I laughed out loud at your comment about the person who didn’t want to disturb you at your desk when you were eating. Happens to me all the time since I have lunch on my desk from about 11:30 to 2:30 every day. (Then I move to my endless supply of clif bars.)
Regarding the awkward conversations you describe, I have found a few tricks to make them less awkward. Before my surgery one of my doctors said “the stomach is over-rated.” I have passed this line on hundreds of times to relate my story. It gets a laugh from people and makes it less awkward to talk about my situation. Then I follow-up with a trivia question: “What is the only essential function of the stomach that can’t be done anywhere else?” Vitamin B12 Absorption! I go on to explain how my wife gives me monthly B12 shots. It helps to get people more interested in the science of it and less focused on feeling sorry for me which I really don’t need. If people are really interested, I might then get into how a stomach (and a pylorus) is a really useful thing to have to help with absorption and how I have a hell of a time keeping up my weight without it. I spoke to the 5th grade class of one of my daughters about all this and it went really well. We had a lot of laughs about it.
Regarding the chat with your running partner, I thought I’d mention I am actually a stage 3 esophageal cancer survivor rather than a stomach cancer survivor. My doctors at MSKCC had determined that the tumor had spread far enough into the stomach so that the whole thing should be removed. It isn’t that common for esophageal cancer patients to have complete gastrectomies so I often feel like I have more in common with stomach cancer survivors like yourself. I don’t know what you mean by a “CDH1 diagnosis.”
I think part of the reason food tastes better now is that I am almost always a bit hungry since my body just can’t get enough calories.
Jeff
Hi Jeff,
I actually had my stomach taken out preventatively because I tested positive for the CDH1 gene mutation. CDH1 gene mutations lead to a bad e-cadherin protein encoding. E-Cadherin is the protein that basically binds cells together. For some reason that means we have a nearly impossible to screen for stomach cancer. And when doctors can finally see something during the endoscopy screening, it’s usually stage 3-4 and the survival rate is very low.
My dad, aunt, grandma and others in my family tree have all died from stomach cancer. Before having my gastrectomy, my endoscopy and 100 biopsies found nothing. My post-operative pathology showed 6 foci of adenocarcinoma.
The gastrectomy is curative, and I am cancer free because of the surgery alone.
So now you know about CDH1 mutations! 🙂 A lot of people are more familiar with the BRCA1 and BRCA2 breast cancer genes. It’s the same concept.
The guy who ran the triathlon (www.dangsteve.com) also had the CDH1 mutation, and there are several other bloggers as well. I like to say that there aren’t many of us but shrink the world through the Internet and there’s quite a few of us able to connect!
Thanks for the tip for telling people about being stomachless!! I will use that angle more.
Marne
Marne,
That is amazing! I actually had heard about this because there was a brother/sister in an NYC support group I was attending who had the same story. They had both had had their stomachs removed as a precaution. Perhaps you know them because they ran some website/foundation related to the issue. They presented a few slides about it once. I remember they said there is speculation that Napoleon carried the gene mutation.
Thanks for the link to Steve Dang’s blog. I took a look and it is pretty amazing. That video is really well done. Once he got past the genetic stuff and to the part about his last meal before having his stomach removed, etc I could really relate. Looking at him before and after, and his wife, well, I think he and I have a lot in common. There is nothing better in life than having a spouse who doesn’t care if you weigh 50 lbs less than the person they married! I feel about tennis as he feels about his triathlons. We both had loads of complications and even more intestines/stuff removed, but we got through it. Not sure I feel the same way as he does regarding his “wouldn’t trade it for anything” comments at the very end, though. I’ll keep an eye on his blog too.
Jeff
My daughter (20) just received confirmation yesterday that she also has the CDH1 mutation. Thanks so much for posting your journey, it will be so helpful for her. I was in Philly too, and Dr Parry Guilford definitely made me feel more confident that early TG is the way to go. I currently have Stage 4 HDGC and totally agree with your comments about balancing things in live. Nothing like cancer to focus the mind on what’s truly important. I’m very sad that she now becomes a member of the little club of CDH1 mutants but it truly means a lot to me that she will have other people who have openly shared their journey to turn to for guidance and support. Thank you.
Thanks Sally.
It’s a difficult journey (emotionally, physically, etc) but I feel like the sharing eases the stress brought on through the unknown. I had so much value for what I could read before my surgery and even through today.
Marne
It was supppeerr awesome meeting you and Kyle, Marne!! You beat me to the Phili update blog post. Haha. That’s what happens when life gets in the way right? Hope you are well. Look forward to sharing more great stomachless stories.
Haha!! I think I had to stay up to midnight that night to finish writing. 🙂 But it’s so worth it!
So cool to share our stomachless stories!! And I hear ya on your travel post. Try to pack almonds or shelled pistachios. They get you through!!
Hi Marne!
I am 29 and was diagnosed with the CDH1 mutation last July and had my surgery in December of last year. I have loved reading your blog along my journey and it has been a great source of motivation to see how you are continuing to do amazing things! I am newly married and my husband and I are trying to decide the best course of action for starting our family. The above research is obviously of great interest to us. I’d love to chat more about it or get any additional information you received at the conference if you are willing to share!
Thanks in advance,
Lauren
Hi Lauren!
I can absolutely chat with you about the genetic research and what choices you and your family have. I’ll send you a note so you have my email and contact info.
Marne
You are a true inspiration to others Marne. So proud of you:)