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:
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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.
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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.
So, let’s go do this! Right now, the forecast is looking like it might be really hot. Current weather forecast models predict a 63 start temp. That might make for an extremely hot race. Then again, this is Houston. If you just wait 2 hours, the temperature might drop 20 degrees. We have spent the “winter” running our A/C one night, then running the fireplace the next. Fingers crossed we are blessed with a nice little cold front before race day. And if worse comes to worse, I will run with a sports bra and show off my sweet gastrectomy scar. Shout out to Dr. Paul Mansfield for one of the straightest and most beautiful little scars ever!
