Drinking Water Post Gastrectomy – Reduce its Surface Tension

Posted on October 3, 2017 by Marne

When I attended the No Stomach for Cancer conference in Philadelphia several years ago, we discussed how ironic it was that plain water is the most difficult beverage to drink. To this day, water continues to be the most challenging to drink since it easily gets stuck in my esophagus.

Rachael’s mom mentioned the surface tension of water is to blame. I can’t tell you if that is the reason, but I am a trial & error believer. Once I add drink flavor enhancers, I am able to drink water twice as fast without problems. I recently discovered Walmart carries a clear version. I like that they didn’t add any additional dyes, for whatever that is worth. A more natural alternative would be to squeeze lemon juice into water. Essentially, anything to break the surface tension seems to help.

Stay healthy and drink water my stomachless friends!

The Unintentional Extreme Taper

Posted on January 14, 2017 by Marne

For my job, I had to pick out what week worked best to go away for a training course. I happily chose the week before the marathon since I thought it would be easiest to attend during the low mileage taper week before the race. There wasn’t much depth to my thoughts beyond mileage.

The week before training, I realized just how terrible my idea was. For the training, you have to stay at the hotel where the training takes place. It started at 5:50PM Monday night, finishing at 4PM on Thursday night. I realized I would be at the mercy of other people when it comes to what and when I eat for almost 4 days. In preparation, I packed 8 bags of nuts and prayed for the best.

The first night, we had some extremely dry fish. I was able to sop it up in some sauce and swallow it without it getting stuck in my throat. I thought, “Ok, so far, so good.” This was a healthy meal option, and I should be good to go. After dinner when we went back to training, my muscles started hurting and I started to feel sick. That evening turned into a sleepless night filled with the worst food poisoning I can ever remember experiencing. As this was happening, I was thinking, “Of course this would happen the week before my marathon.” The next day, it took until after lunch before I could hold any food down. The word to describe that day was ‘weak’.

The remainder of our days were filled with set meal times and lengths. I had 30 minutes max for every meal. It was a stomachless person’s nightmare. When you did get to a meal, you weren’t sure what the food quality was regardless of how much you could actually consume during the meal time. I only ran one day for 3.5 miles. You could call this the ultimate taper before marathon day.

Jump forward to today. I am recovering from my exhaustion and weakness. I have spent the past few days shoveling as much protein and water as possible into my body. My husband said I lost a noticeable amount of weight this past week.

So, this is it. The night before, I sit here and blog while eating a banana with peanut butter. Have I done enough to recover my body and mind so that I can race well tomorrow in the heat and humidity?

For me, tomorrow will answer whether mind can truly win over body. My training had gone well up until now. I’ve spent my last days recovering my body through food, fluid and rest. Will it be enough? We’ll see tomorrow.

If you’d like to track me, the race has the instructions here:

http://results.houstonmarathon.com/2017/tracking

Here is where I representated #StomachlessRunner2017 on their graffiti wall

and me alongside the long 26.2 mile route ahead of me tomorrow morning.

Chevron Houston Marathon – 10 Days Before Race Day

Posted on January 6, 2017 by Marne

What a fun and exciting time before a marathon. I’ve finished my time-consuming, daunting long weekend training runs already. I’m just coasting on my shorter distance runs, playing with some faster paces to see what my body might be capable of. The tough training is now behind me with only the race itself ahead. I’ve built in extra pounds (119-122 lbs) to burn during the race. I’m downright giddy.

This year’s marathon was meant to be. Yesterday afternoon, it all started with an IM from a coworker. She saw me on a FB posting by the Chevron Houston Marathon with the title “10 Days to Go!”. Sure enough, there I am! This was a shot taken from my half marathon finish last year. So now, the girl who runs without a stomach has become one of many cover faces for the race! If only I could get the marathon to share my story to advocate for gastric cancer awareness.

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!

My family has blocked off the morning to support me. My husband has thoughtfully helped me build my strategy. We believe that mentally I should stay with the 3:30 pacer. My left IT band is causing me some concern, and I don’t know how well it will hold out. If halfway through the race I am feeling strong, I will always have the 3:20 pacer as my rabbit to catch. Bear in mind, 3:21 is my PR. Let’s go negative splits next Sunday! Here is the medal awaiting yet another milestone in post-gastrectomy life, motivation to cross that long-awaited finished line.

18 Miles Strong

Posted on December 23, 2016 by Marne

This morning was my 18 mile taper run, the first reduced long distance run before the race. Next weekend, we dial it back down to 14! I tagged along with a nice group of runners to enjoy a cool, misty morning. Now, I’m onto Christmas cooking, a little chicken noodle soup for lunch, followed by The Santa Clause movie night with friends and neighbors.

I hope you have a Merry Christmas!

It’s Time to Run a Marathon without a Stomach

Posted on December 18, 2016 by Marne

January of 2016, I finished my 3rd half marathon post gastrectomy. In the excitement of race day, I decided to sign up for the full marathon in January of 2017. Halfway through 2016, I was starting to doubt my decision. With 5 marathons under my belt, I am well aware of both the time commitment and calorie burn required for the 4-month training schedule prior to race day. How am I going to actually do this? The answer is friends.

Over time, I have met many running buddies just as crazy as me. Actually, some of them are even more dedicated than me. They might even run 4 miles before a 5AM run. These are inspirational people with a passion for running and a healthy, active life. It was these same running buddies who have inspired me to run the full marathon. They have been there at 5AM on Saturday mornings, shoes laced up and ready to put in the long mile runs together as a team. This morning with their camaraderie, we completed our longest distance pre-marathon day of 21.8 miles. With that milestone, I can say I have trained through the toughest distance run required prior to race day. We will taper our long runs down to 18 miles next weekend, then it’s just maintaining a more normal running week. I am now both mentally and physically prepared for race day. My goal time is 3:30 still, my same goal with my stomach. We’ll see if I can break that time on race day.

Back in July, I got another “nudge” that I was meant to race the full this year. I opened my monthly update email for the race, skimmed it for any interesting information and deleted it. Later that day, I get that same email forwarded from my husband with an email chain to him saying “Is that your wife?”. Of the 25,000+ racers from Jan 2016, someone randomly selected my photo to throw into the email banner. Yes, that is me on the left. If that doesn’t mean I was supposed to race this year, I don’t know what does! Race day is Jan 15, 2017, and I will not be taking the left turn for the half marathon.

For race logistics, I’ll tell you about energy gels and water consumption. I am able to eat gu while I am running with no negative side effects. For me while running and actively burning calories, I never encounter even a semblance of blood sugar problems. Without my stomach, the gu is absorbed more rapidly during the race, providing a near instant energy boost. Whereas when I had my stomach, the energy boost was delayed 10-15 minutes. I plan to take 3 gus during my race and utilize the water stops. I do find that it is harder for me to drink water during races. Plain water continues to be one of the most frustrating food/drink items to consume on the typical day. Everyone with stomachs has the luxury of gulping down their water. I very patiently pinch the cup so it doesn’t slosh all over me, then keep running while taking sips to get it all down.

I am about 3 1/2 years post surgery, and have been able to gain weight. I describe to friends that I am fat and happy. I will never forget how weak I was when my weight bottomed out at 103 lbs (46.7kg). Going through TG recovery gave me a new appreciation for a strong, healthy weight. This morning, I mentally noted how impressed I was to eat a small plate of eggs within 3 minutes. In my early post-op days, I had some very bad experiences with eggs getting stuck in my throat and taking many hours to get down. I can enjoy sweets in moderation now, and I can eat a good portion of a meal at dinner in the same time others finish their meal. This doesn’t mean I have the capacity to finish the meal, but I can eat the leftovers later. I still depend on snacks, and have to take special care to prioritize eating on days when I burn a lot of calories. I found a box of prepackaged nuts for on-the-go at Costco with salted almonds, unsalted almond, and salted peanuts. These plus peanut butter crackers tend to be blood sugar savers for me on busy days. I’m not sure what people think during a work meeting when I bust out peanut butter crackers like a little kid, but I’m not bothered.

And since it has been so long without a post, I was going to share a few highlights from our year. We took a family vacation to Seattle, so here I am off the Puget Sound.

Kyle and I needed a couples vacation to rest, relax, and recharge. Thanks to our wonderful family back home watching our kids, we were able to visit the beautiful beaches in Aruba.

And none of this is possible without all the support from my loving husband.

Have a Merry Christmas, and I will post my post marathon highlights.

How to Choose a Surgeon for a Total Gastrectomy

Posted on April 10, 2016 by Marne

The last month, I’ve been able to discuss CDH1 and/or the total gastrectomy procedure with several people who are in the manic “shock” phase of a CDH1 diagnosis. I’ve had a lot of time to reflect on both my recovery and the wide array of recovery complications for other individuals. As such, it seemed prudent to give my opinion for how to choose a surgeon. When all is said and done, you’ve got one shot to get the surgery done the right way.

My surgeon was Dr. Paul Mansfield at MD Anderson in Houston, TX. He is fabulous, and I can’t thank him enough. He performed my brother’s surgery, as well as 5 other CDH1ers I’ve met. None of us have had major complications.

Below is how I group what you should care about in choosing a surgeon.

How many gastrectomies has your potential surgeon performed?
- You want someone who knows what they’re doing.
What is your leakage rate?
- The anastomosis is the fancy medical term for the connection of your esophagus to your small intestines. This is the most critical element of your surgery that will impact your post-gastrectomy life. You want the food in your esophagus to stay inside the esophagus and the small intestines.
What technique do you use for the anastomosis?
- Stay far aware from any surgeon who staples this connection. Staples lead to a higher incidence of strictures. Strictures are when the anastomosis contracts and you can’t get food through. When this happens, your only option to address the problem is to go through a series of dilations to get the stricture opened back up.
- To be clear, a stricture could happen with a hand-sewn anastomosis, but it greatly reduces the incidence of stricture. Your job is to minimize all likelihood of the complication with the best practice.
- I haven’t had any strictures, and Mansfield specifically discussed performing the anastomosis with hand stitching. This is why my surgery was performed half laproscopically and half open. To minimize risks, the surgery starts laproscopically. Then they cut the vertical incision in order to perform the anastosmosis by hand.
- How are you confident that your anastomosis is sealed and done right? So apparently the human digestive system can identify leaks the same way you identify leaks in a car engine. They submerge the connection in water and put a puff of air through your esophagus. If they see air bubbles, they have a problem.
- A lot of other bloggers mentioned a barium swallow test before they were allowed to start eating. I didn’t do one. When I asked Mansfield, he said the possibility is there for both false positive and false negative results. As such, the surgeon needs to be confident in their connection. When I asked how, he explained the water submerge technique.
Feeding Tube – You Need One
- I’m a huge fan of the feeding tube. Given my pre-surgery weight, I didn’t have a lot of extra weight to lose. But even if I was overweight, I would be sure to have the surgeon put in the feeding tube. It’s a backup plan. If your recovery has complications, it’s not like you can easily go in for an additional procedure to put the feeding tube in after the fact. You want the feeding tube in place while you’re on the table. If you hate the feeding tube, great. Just don’t use it. Prove that your oral intake is good enough to have controlled weight loss.
- You’ll be going in for major abdominal surgery. At the very moment your body needs full nutrition in order to heal and repair itself is not the right time to malnourish your body.
- Uncontrolled substantial weight loss creates a whole other set of additional complications above and beyond recovering and adjusting to your new digestive plumbing. You’ll have plenty of time post TG to lose weight if you want because remember that you don’t feel hungry anymore.
The Surgeon
- Make sure you like the person. My doctor was not only compassionate and caring, but also experienced, knowledgeable and logical. He provided sound medical test results that supported his rationale for every technique he used for my surgery.
Location
- Don’t have your surgery at a small local hospital. Go to a major hospital with expertise. But that being said, I can’t believe there is only one doctor in the United States capable and experienced. If you’re near Houston, by all means, call up Dr. Mansfield. If not, there is probably one at a whatever great major hospital is near you. Just do your research, ask the questions and compare. It’s worth your time.

The only other surgery-related concerns I would have before a total gastrectomy is about your own health. If you can get yourself into great shape before surgery while eating up a storm to pack a few pounds, do it. Go to the gym 6 days a week leading up to surgery, whatever you have to do. I can’t tell you why my recovery has gone so well, but I won’t discredit the unknown benefits of exercise. For me, I thank my crazy running habit for my amazing recovery.

Hope this is helpful.

And of course no new blog post is complete without a picture. Post gastrectomy life should be a constant attempt to live life to its fullest. If a brush with cancer and a major internal plumbing change doesn’t force you to focus your life priorities, I’m not sure what will!! For me, I love music, so I make sure to always get to some good concerts. This past month, I was able to go to Mumford & Sons. They put on an amazing concert!! Here we are getting into the concert venue for our date night! It was a blast! Kyle is my rock and greatest supporter everyday, and I am so blessed to live my life with him.
MumfordAndSons

A Stomachless Work Lunch

Posted on February 23, 2016 by Marne

I wanted to add a short post to elaborate on all the goofy comments you must be prepared for post gastrectomy.

For lunch, I met a coworker who was aware of my “stomachless status” at a local Mexican food restaurant. I ordered one crispy taco lunch portion which also came with rice and beans. We were having a great discussion when the food arrived. I looked over to discover that the “single” crispy taco was the size of half of a soccer ball. It was an insanely large portion. (But that’s pretty typical at restaurants, so no surprise there…)

As per usual, when my coworker was done, I took my cue that I should be finished by now and asked for my usual to-go box. At this point, I didn’t think much of what had happened. I actually thought, “Wow, I did really good. I ate half the taco, half the beans and rice and even managed to finish by drinking some of the ice water.”

When the waiter came with his to-go box, he caught me off-guard by asking, “Was there something wrong with your meal?” To which I replied, “Oh no, I just eat lunch part A and lunch part B.” He simply responded with “Oh… you’re one of those 6 meals a day people.” I thought and said, “Why yes I am.”

So, if you don’t have a stomach, be prepared for the random comments and what you plan to respond with. On a side note, I am swimming in leftovers that I need to eat. So, you should be prepared for that too if you don’t have a stomach. 🙂

A Beautiful Race

Posted on February 16, 2016 by Marne

Sunday, Jan 17, the city of Houston hosted the Chevron Houston Full Marathon and the Aramco Half Marathon. It was a beautiful day with perfect running weather, no breeze, 40s-50s during the race, and a clear blue sky once the sun rose.

I was yet again blessed to participate in the half marathon. I was extremely disappointed with my race results last year because of my iron deficiency. This year I am in full health. But as I stood in Corral B unable to start in Corral A with my friends, a little part of me was kind of bummed out. Luckily the pre-race excitement was the main emotion I felt as I stood there just smiling about the day.

So, God always has a plan. I started talking to the fellow runner randomly beside me in the corral. His name is Andy, and I learned he was about to race in his first ever half marathon after having open heart surgery within the last year to repair a 100% blocked vein to his heart, commonly referred to as the “widow maker” since most people don’t survive the blockage. He had trained for the half marathon with his teenage daughter who is a cross country runner. But the morning of the race, she was in a wheelchair because they recently discovered she has something called POTS (Postural orthostatic tachycardia syndrome)

My jaw was hanging open just listening to his story. Starting, as well as racing this half marathon, clearly was a giant milestone in his life. These races are more than just feet pounding the pavement. For me, as well as so many others, the race is a line in the sand or a triumph we’ve accomplished. I didn’t race with him for more than a few miles but was able to look up his results afterwards. He crushed it exactly the way he wanted to. The human capacity to overcome obstacles and soar with even more appreciation for life is amazing.

One of the big reasons I started this blog in the first place was during the hours of searching online for post-gastrectomy capabilities. I couldn’t find any resources sharing about their abilities in athletic adventures. I went into my surgery following a marathon PR since I wasn’t sure if my running career was over or not. This year, I feel like screaming to the world, “I’m back!!!!!!!!!!”. Once I sorted out what vitamin supplementation I need to do and packed on quite a few extra pounds, I was able to run just as well as I have run with a stomach.

My husband and children waited for me near the finish line. They also met a man whose young daughter had just survived ovarian cancer. They felt blessed just to share stories with one another and what this race meant for the people overcoming their personal obstacle. He took the photos I posted as I was squinting to see and wave at my ever-supporting, wonderful family.

I ran my half marathon in 1:39:15. This was only a minute off from my best half marathon time (with a stomach). My running days are far from over, stomach or not.

An Instant Remedy for Bile Reflux…Soda!!

Posted on October 28, 2015 by Marne

During a family camping excursion, I unintentionally discovered the most effective and almost instantaneous remedy to get rid of bile reflux!! I have been getting bile reflux quite often, the kind that wakes me up in the middle of the night. And quite frankly, I’ve lost quite a bit of sleep because of it. Once I get the reflux, I’m not able to sleep well afterwards because the burning in my throat keeps me awake.

During camping, the only drink we had left inside our tent was, ironically enough, diet Pepsi. I knew I would have an issue before we went to sleep because I’d eaten s’mores (graham cracker, chocolate and marshmallow) and pretty soon after, we went to bed. We forgot to pack pillows, so I was basically laying completely flat on the ground. Both of these meant I would wake before sunrise to that burning bile feeling in my throat. So, at 5:00 AM or so, I was woken up by that exact feeling and tried drinking the only beverage I had available.

To my amazement, it turns out diet Pepsi completely got rid of the bile reflux, and it happened in approximately 5 minutes or less. Since then, I’ve done a little trial and error at home with this. If I wake up with bile reflux, I go and grab a Coke Zero (my personal favorite) and I take 5-6 giant gulps. Somehow the soda shoves the “knot feeling” down and gets rid of the burning feeling.

I’ve been so flabbergasted by this discovery, I just had to share it as its own unique blog post. I hope it will help those of you who also have this issue. On a side note, my stomachless brother does not have bile reflux, so he’s never had to try this.

Hope that helps! Have a good night.

A Day in the Life of the Stomachless Runner

Posted on October 13, 2015 by Marne

You’d think that 2 years out, there’d be nothing to blog about. But everyday is new and different. Today I was reflecting on my day…all in all quite a pleasant day, but with quite a bit of gastric discomfort, mostly a result of my own poor food choices.

It all started out in the morning. I managed to keep the motivation to get up early and get out the door for a run this morning! Hooray! I’m in a life phase right now where my running needs to happen long before normal people wake up, otherwise it doesn’t happen or gets in the way life and family. And since I’m usually tired, I sleep as long as possible, fall out of bed, throw on some running clothes and get out the door. Of course, one of the dangers of running first thing in the morning is the lack of bathroom stops that are actually open! (I know many runners who have stomachs who have the same dilemma, so maybe this is purely a runner’s issue…)

The night before, I did not eat well. I had a piece of fried chicken with a scoop of potato salad and some fruit. I wasn’t at my house, and my water cup was cleaned up by the time I was ready to drink again. So when I got home later, I tried to catch up on my thirst, but it was a bit too late. When I woke up in the morning I was clearly dehydrated, so much so that I went ahead and drank a half bottle of water quickly. (I know better before an early morning run…)

So I happily get my legs warmed up with the first mile and then my gut just kind of wrenches. It’s the kind of discomfort that actually makes me stop to walk because it’s so uncomfortable. I made the decision to go ahead and turn around and book it home. Good plan!

Then I got to drink some water, felt better and went on with my day. I’ve been a bit obsessed with coffee brewed via a French press. I do believe it might be the best cup of coffee ever! And I’m pretty sure that since cutting my stomach out of my body, I am more obsessed with good, quality foods when I have time and control over it. So my coffee with cream and stevia was unbelievable as usual.

I ate a sausage, egg & cheese kolache at work. Then late morning, I ate some leftover rotisserie chicken and a banana with peanut butter. Late afternoon, I ate a mini turkey and cheese sandwich on a bread roll. I prefer to just eat at my desk all day long, since it’s easier on me to just work and eat at the same time. It’s a stomachless person’s dream.

Here’s a few tips and tricks I’ve learned (and need to remember for myself):

Eat oatmeal before bed, but not too much.
1. It seems to help ward off middle-of-the-night bile and slow your digestive track for your early morning run
Don’t drink a lot of water before bed.
1. This seems to be the main culprit behind the bile that wakes me while sleeping
Be hydrated the night before so you don’t have to drink water in the morning before a run.
1. Your digestion seems to wake up after you wake up
2. Running seems to wake up digestion even more
3. and drinking water seems to get it moving even faster
4. The above is the perfect trifecta for a trip to the restroom
Exercise
1. I feel better when I’ve gotten exercise 3-5x per week.
  1. This might just start out as a simple walk early post total gastrectomy. You can get back to what you want further out from surgery
Blood sugar
1. Your stomach was a buffer between what you put in your mouth and your digestive tract. Once you say goodbye to your stomach, ratably supplying your body with food is up to you to manage.
  1. Your blood sugar can drop low if you haven’t snacked, much the same way your blood sugar can spike when you eat too much sugar.
2. Always keep a protein-packed snack somewhere nearby for when your blood sugar unexpectedly drops. When I notice my hands start shaking and feel ‘off’, I immediately eat protein. I tell my kids, “Mommy has to eat right now. I’ll be with you in a few minutes.”
Start your day with protein
1. If possible, eat eggs for breakfast
  1. If you eat out for breakfast, watch out for the “fake egg” places that serve what they call eggs but have so much grease it surprises you
  2. I had a lot of trouble keeping down scrambled eggs early on, but now they are a “go-to” food for me.
When eating meals with others, use context clues for how long it’s “supposed” to take normal people to eat
1. At this time, just get a to-go box and finish the rest 30min to an hour later
When eating out, prioritize what food on the plate you eat first
1. Protein first
2. Fruits and veggies
3. Simple carbs last (typically become the leftovers you take home)
The further out from surgery, the less you need to snack, but…
1. Big meals can be uncomfortable
2. You can have spikes in blood sugar
  1. Up – when your body is digesting that giant mass of food
  2. Down – before you eat again
Be positive
1. When I run marathons, I’ve realized (to quite a big extent), your brain tells your body what it can do. Keep this spirit in post-gastrectomy life. Everyday won’t be rainbows and flowers, but push through and remember the big picture. Mind over matter.
2. Go and see the world. Travel now. Love on your family. If you want to see or do something, plan it and do it. No more indecision. Don’t put it off any longer.
If you drink water near a meal, water before a meal seems easier than water after a meal.
1. It’s almost as though your digestive tract doesn’t want you to accelerate the food through your gut with water.

Summary list of go-to foods today

Egg
Pistachios, almonds, peanuts
Salmon
Cheese slice
Peanut Butter

I hope this list and these thoughts help you. Small, frequent healthy meals are best for feeling good. I still enjoy ice cream and sweets without too many issues. I just watch my portion size and it seems to go ok. I can tell when it’s “almost too much”.

Here are a few photos from my trip with the family this summer to Alaska. Such a blessing to be able to share such a beautiful place together. Alaska was designed to remind us just how big and beautiful the world is.

Have a great day! Can’t believe it’s been almost 2.5 years since my gastrectomy!!

Life Without a Stomach

How I navigated my way through a total gastrectomy