So, this is a blogging streak for me! Apparently you get some extra iron in my system, and I return to my crazy ways!!

This post is just some open-ended questions that cross my mind sometimes. Short and sweet.

1. Why am I doing so well?
2. Why haven’t I had any major complications or setbacks post-gastrectomy?
3. Can I credit my crazy marathon running past with my overall health? Is this a factor in the quality of my recovery?
4. How awesome must my surgeon be?
5. Why do some doctors not by default put in feeding tubes post gastrectomy? Does the slow and steady weight loss post op as a result (vs the scary fast weight loss) prevent complications such as the gall stones that I’ve read about?
6. Do the food consumption changes post surgery bother me less than other folks?
7. Is it easier to spit out food that gets stuck, rather than being uncomfortable for 20-30 minutes?

I don’t have the answers, but these are some questions that still linger from reading about others’ experiences as compared to my own.

Happy Tuesday! I’m off to spin class in the morning under the presumption that exercise is directly related to my overall health post-gastrectomy. So long as I can make up the calories, I’m keeping it up.

Let’s Talk Iron Deficiency Anemia

It’s been a while since my last post, and life is busy as ever. I can hold my weight and have been focusing lately on hydration, quality foods and exercising. I do eat all the time, both a blessing and a curse. I’m still the skinny girl who indulges in the candy and seems to always be eating, but is still skinny. (This generally makes people mad!) As my life has moved forward, some folks know I have a stomach and others do not. It seems like too long and complex of a story to explain to most people in a short time.

My kids make fun of me for being such a slow eater. But honestly, forcing our family to take time to eat and enjoy our food isn’t a bad thing. It might take me a while, but it forces quality family discussion over food. I could think of worse things to happen. I’ve been attending the kids’ Valentine’s parties, planning a skiing vacation and keeping up with life. Life is still full of so many blessings, it is just wonderful.

The one big reminder I still have about not having a stomach is food getting stuck. As long as I chew well and try to never rush food, I’m fine. I try to stick to this theory. But every once in a while, I eat too big of a bite and it gets stuck. I salivate like Pavlov’s dog and go spit somewhere. Not very attractive, I know. But it’s one of those things I can deal with. It doesn’t happen often, and when it does, I just stop eating until I can tell it has passed. What’s interesting is that my brother never has this. If a food doesn’t agree with him, he experiences gastrointestinal discomfort more so than having to throw up.

Girl Scout cookie season has arrived, and I’m currently testing a question: “How many thin mints can I eat in one setting before I sugar crash or get dumping syndrome?” So far, I’m able to consume like 12 cookies and still be ok. It’s craziness. I think four thin mints have 8 grams of sugar, so that’s pretty impressive. I never could’ve managed that much sugar early post surgery.

Now onto the main topic… iron deficiency anemia! Woohoo! Are you as excited as me?

Anyhow, I went to see my surgeon, and they did a general blood screen. My gastrectomy by-passed my duodenum, where I have read most of the iron is absorbed into your body. This puts me at risk of anemia. I had been feeling incredibly tired and when I ran, it felt like my muscles just weren’t responding the way I am accustomed. I also looked up symptoms, of which I had pretty much everything: cracked corners of lips, sore tongue (think tongue on fire after eating incredibly spicy food), pale skin (paler than my usual pasty white), some mental fogginess and bad skin. I felt like the walking example of iron deficiency anemia, so I started adding an extra daily supplement of ferrous sulfate (This was a leftover over-the-counter supplement which I had taken during my pregnancies). I started feeling better and am still continuing feeling better even today. My energy levels are coming up, and I don’t feel exhausted all the time. My blood screen came back after 1.5 weeks of daily additional supplementation and I had a 9.1 hemoglobin count. I’m not sure exactly where you should be, but the pretty chart had a trend line with a reference point of 12. I assume you should be above a 12 to be in good shape. You could see my hemoglobin trendline just plummeting….into exhaustion.

So now I’m adding the daily supplement for 2 months to see if I can get back on track. The trouble with nutritional deficiencies is remembering just how long it takes you to get this deficient and then how long it will take you to get back. The struggle I have is the act of actually taking the supplement. When I take the full iron supplement, I don’t always feel good. It’s almost like a “sugar crash” feeling where you just want to go and lay on the couch. But I found out that if I cut the pill in half and take it in two separate, smaller doses, I don’t feel sick.

So far, my energy levels are up, my muscles feel like they’re starting to give me a bit more in my workouts, and my skin is starting to clear up. I will be continuing to watch this trend. My guess is after my iron is at acceptable levels, I’ll need to figure out exactly what a “maintenance volume” might be. Would it be 2 supplements per week or just 1? I will have to find out!!

On a side note, I completed my second half marathon without a stomach in January!! It was not my best time by any stretch of the imagination, but I got it done! I was tired at the start and didn’t have a running buddy. I FaceTimed my children 5 miles in, which made a lady running by me think I was crazy and talking to myself. 🙂 I was pretty bummed about a 1:54 finish time, but my surgeon bailed me out with good excuses. He said running with iron deficiency is like strapping weights to your arms, feet and then throwing a backpack on for good measure. The iron in each blood cell is what transports the oxygen to your muscles and takes away the carbon dioxide. If you have a deficiency, it’s like pulling a sub compact car up to transport passengers instead of the planned megabus. It’ll take twice as much blood to accomplish the normal oxygen delivery. So my excuse for this year’s half marathon will be iron deficiency anemia. I plan to correct this problem and try again next year!! (I’m already signed up.)

Sometimes it’s just about looking fast!

What’s better than a pre-race selfie?

So that’s a few thoughts about 20 months post gastrectomy. Thanks for following the blog!

Vacation to the Bay Area!

So I had my last post sitting in draft mode for quite some time, so this is a bit of a double-post evening. I wanted to highlight a wonderful trip I got to take to San Francisco.

Most importantly, I got to meet my blogging friend Steve! He managed to run into every setback in the book the month preceding my trip, so I wasn’t sure how on earth he’d be able to meet me for dinner. Steve actually emailed me before I arrived about how great it is to have spent 6 nights in a row at home, not revisiting the hospital! I can’t believe they made it after all of that!

Here we are. And the best part was having a stomachless friend who also took a to-go box. The “EAT” sign in the background was completely unintended but so very appropriate. Steve has really embodied the positive spirit of people I want to surround myself with in this world; to be able to meet was so exciting!

We got to chat about what we’ve gone through, ask family history questions, laugh about some stuff and realize how great our spouses have been for supporting us through this whole crazy rollercoaster. Keep on recovering Steve! You’ve got this!

Now onto some touring we did…
I do still love me some coffee. Here we are at Olea in San Francisco enjoying (for the first time) french press coffee. This coffee was coupled with my breakfast of huevos rancheros. (I do separate food and drink at most meals still. Restaurants that are slow enough to allow me to drink first before the food arrives are my favorite!)

I did get to eat a lot on this trip. Here were some fabulous dinners.

I found that I can eat quite a bit of seafood very easily. Here’s Mr. Crab. Messy but so tasty!

The trouble with extended eating out is there tends to be a general over-abundance of fat and not enough protein and iron. So, to shore up that issue, I enoyed a center-cut prime rib. Amazing!! The photo is of the delivered steak, and I was able to eat most of it because I didn’t get any appetizers.

And finally a non-food photo! Here is Kyle checking out the Pacific ocean. I believe this was the first time I’ve visited the Pacific ocean. 🙂
Pacific Ocean

I wanted to add a bit more to the blog, but I’m too tired. I’m signing off and hope you have a great night.

15 Months Post Total Gastrectomy

My being stomachless doesn’t enter my mind as often anymore. Every once in a while, I struggle a little bit with a food. Or I get the feeling of a little lump in my throat that reminds me about my surgery. But generally, I eat a wide array of foods now. I can eat some salad, but don’t always feel like it. I do snack a lot and get full after a good portion size now. I eat steaks in hopes of good protein and extra iron. (Need to get my levels checked.) The one item I stay away from is corn. The skins are just too much to chew down. Ironically, popcorn is still fine; and I eat that in giant portions!

For snacks..
I spoon dollops of peanut butter out of the jar at work…it’s classy. 😉
oatmeal still is my friend (add creamer and splenda)
chips (not in excess or I feel bad)
greek yogurt (eat half, wait, eat other half….still struggle with sugar content of this if I eat it too fast)
handful of peanut butter M&Ms
I can eat a small ice cream sandwich
protein shakes (muscle milk + water. go slow or feel a bit “off”)
cheese stick

My incision is barely noticeable. Oddly enough, it was one of the incisions from the laproscopic portion of my surgery that is more noticeable. But that was my fault. I think I popped that stitch trying to walk too fast too soon after my surgery.

Running & Life…
I’m able to continue working out and running like the crazy runner that I am. My biggest constraint now is unrelated to my surgery…time. Other things seem more important. So I workout super early in the morning and sometimes get too lazy. Family, fun, work and sleep requirements are so demanding!

More Running…
So I’ve been running 5-6 miles 2x a week on weekdays and walking a few miles over lunchtime 5 days a week. I try extra hard on running days to get extra food down and focus on protein and iron. Seems to be working pretty well. I hope to get out of my laziness and force at least 3 runs per week. I am again signed up for the half marathon in January! I plan to still pass by folks with stomachs just because I can.

Even with running, I’m holding my weight at 114-115. Gaining weight is still a bit tough though. The one thing about a gastrectomy is you can snack a lot, but you can never overeat the way everyone else can anymore.

Today Marks One Year

One year since I proactively checked myself in for a surgery to remove my stomach because it was going to kill me. I underwent a surgery that had a crazy long recovery. And yet today life is darn near normal.

I eat healthy. I eat small portions. I eat slowly, and I chew thoroughly. Most foods have made it back into my diet, though some foods I’m more cautious with since they’re more cumbersome to chew or whatever the case might be.

I proactively start my gut with water, then protein. I make my small but perfect homemade egg muffin sandwich with cheese. I’m holding my weight well and able to run 3-6 miles 3 times a week, plus work full time and raise two beautiful children.

I focus on iron, protein and vitamins. I stay away from much milk unless it’s added to coffee or eggs for scrambling. I can do Greek yogurt now. I’ve added Cheerios as a snack for iron and vitamins. I’ve also been rocking a lot of expensive steaks because they are tasty, have iron and have protein. The best cuts of meat work cooked medium to medium rare because tendons and fat are hard to chew. The good cuts are easy to chew.

I can drink wine and beer. I have to watch restaurant margaritas because they must sneak sugar in them.

I always get a take home box from restaurants. But for lunch, the doggie box is just so I can finish lunch an hour later.

Sometimes I get tired, but most would expect that given my hours and everything I take in. I’m signed up for another half marathon in January.

Life is normal. I still miss my dad, but he’d be proud. My stomach will not kill me before my kids graduate high school. So my surgery has given the finger to my gene mutation, and I’m happy to have that option. It’s still in the back of my mind my kids have a 50/50 chance of inheriting this mutation from me. But I donate to non-profits that fund stomach cancer research in hopes that medicine in 20 years will give my kids even better options than what I’ve had.

So tonight, I’m thankful. I love life and seek out the adventures I’ve wanted for my and my kids. It’s awesome. I thank God for my extended lease on life. My scars have faded and most people’s response is, “Wow, they took your stomach out in that tiny incision!” My surgeon and MD Anderson are the best. And thanks to nostomachforcancer for research and networking folks together.

So that’s my normal life one year post op!

Frank Discussions between Stomachless Siblings

Yes, this post will explore some of the discussions my brother and I have had about how his recovery is coming along compared to mine. I have to say, no one’s recovery is exactly the same; but we did have the same surgeon & hospital here.

First difference, pre-surgery my brother read the directions correctly and drank half the bottle instead of the full bottle of the stuff that “clears you out”. Apparently I got rid of both good and bad stuff in my digestive tract, which we’re guessing is why I got thrush. Score one for my bro for reading directions correctly.

Second difference is he’s a boy & boys burn more calories. We both have high metabolisms, but just like when you exercise, the “calories burned” calculation gives men more calories burned for their exertion. My brother was tall and thin before surgery; now he’s tall and thinner. He’s actually slowly losing weight still because we’re thinking he needs 2400 calories a day. Having gone through gastrectomy recovery, my jaw drops thinking about that number. I struggled daily to push to a full 2000. I just don’t know if 2400 is possible. He’s at 4 months post op, but I saw most of my food portion volume gain around 6 months. At 4 months I could just eat a tiny bit faster. So we can only assume 2400 calories is the result of our family’s high metabolism and his gender.

Third difference was best quoted from him. Read aloud in a sarcastic tone: “Not everyone can have a gastrectomy and run a half marathon 7 months later. Some of us can’t add exercise at 4 months because all that extra movement means more food has to be eaten.” My brother loves me. He also knows I’m crazy, especially about running. And in most aspects of my life, I don’t tend to take no for an answer.

Fourth difference (might just be timing) is that if I eat close to bedtime and don’t prop my head/torso up for a while, I get bile creeping up in my esophagus….and it burns, is uncomfortable and wakes you up. My bro hasn’t had this yet, but his food volume hasn’t gone up enough yet. I’m wondering if he’ll have to watch out for this later on. Oddly enough, if I eat just oatmeal before bed, no reflux. If I eat most anything else (pirate booty, dry Cheerios, milk, chips, crackers…), I’ll have issues with bile. And I have no idea why…

Similarities include nutrition focus. Post gastrectomy it seems everyone is focusing on energy and nutrition. I still don’t feel full energy everyday, and sometimes after I eat something that disagrees, I’m down for the count for 15 minutes. Since I am trying to ramp up my running, I need to monitor my iron levels and general vitamins. I had iron-deficiency anemia during my pregnancies, so that is not new to me. I continue to strive for 60 grams of protein daily.

Our scars look pretty darn good. At a year out, my scars are fading. My brother’s scars are less red now and the feeding tube hole closed up completely a little while ago. We chat a lot about how it’s going for him. When people ask, my response is along this line…”He’s doing really well. He’s in the worst part of recovery where you’re tired of eating all the time, but you have to in order to hold your weight.” Then I describe calories and time…. “You know those lunchables, the small ones with just the meat, cheese and crackers? Well, that’s only 240 calories and after my surgery, it’d take me an hour to eat one. My bro needs 2400 calories, and when it takes an hour to eat a lunchable, you can imagine how often he has to eat.”

Those are my thoughts for the day. And also that June marks one year since my surgery. Crazy!!!

Early Morning Susceptibility to Sugars

So you’d think that at almost 10 months post op, I would’ve figured out this whole post-gastrectomy diet thing. But my husband and I were discussing my sugar crash this morning…

It seems that for breakfast, I can’t have anything sugary at all. But later in the day I can handle some sugar. His argument is that when your body has fasted all night, it instantaneously absorbs whatever you eat in the morning. This morning I had my regular English muffin with butter and scrambled eggs plus a little jam. But I finished off 4-5 bites if my son’s Kellogg’s strawberry something sugary with milk and it threw me into a mild sugar crash for 10-15 minutes.

So that’s my assessment for today. I truly feel that my body had adapted really well so far. I can eat small meals, life is good. I’ve found that one protein shake in the morning with 2 scoops of muscle milk is the only big supplement I need with my kids multivitamin at night.

It generally keeps me at my crazy energy level (distance running included) and I try to eat well and incorporate some protein at every meal. Just watch out for the first meal of the day. Also water seems to get the whole digestive system going first thing in the morning.

So happy Sunday without a stomach. Clearly God didn’t want me to have a stomach. I’m not sure why, but He is good and my life is beautiful.


9 1/2 months post op

Eating just about everything!! As long as I chew a lot, most everything agrees!!

For my friend Steve, here are my grilled mahi mahi tacos with raw cabbage and fresh tomatoes with a cilantro lime sauce!! They were awesome and I could eat both in one sitting!! I forgot to take the photo until after I’d eaten the first one!!

And all this after some winery touring!


Sugar crash!

Saturday night before dinner I had quite a few bites of some leftover carrot cake. This apparently was just too much sugar.

Since I’ve posted photos of full energy Marne after running my half marathon, it seemed appropriate to post the polar opposite sugar crash photo…a reality of life without a stomach sometimes!


On a side note, my bloodwork came back and I’m still fighting my low prealbumin, an indicator for longer-term protein storage. From what I read about prealbumin, it’s stores for the last two weeks. My diet went downhill during our vacation, so I think this is to blame. I’m back into my healthy diet again, trying to bring those stores back up!! Plus I picked up my Creon prescription, so that should help. Omg, it was $190!!! It had better help a lot! And there’s no generic available.

Have a great night! And try not to eat too much sugar at once!

Fellow CDH1 Bloggers

I’ve recently heard from this amazing network of bloggers posting about their experience on the journey of finding out about the CDH1 mutation, going through testing and having a gastrectomy. We all seem to be at different stages in the process, so I wanted to share these links that aren’t listed off of nostomachforcancer.org. I know I’m missing some links I’d found through the Facebook support site too. I’ll have to add them later. 🙂

I’m so thankful for the internet so you don’t feel alone in your journey. There’s quite a few of us across the globe!

The Daily Dump



It’s the beginning, not the end.

Genetically Challenged