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!
MarneSteve

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!)
coffee

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!
crab

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.
steak

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.

Pretty lucky, Pretty Normal – 18 months Post Total Gastrectomy

So, the Houston heat is finally on its way out. And I made it out this morning for a run. It was foggy and probably 99.9% humidity. So much moisture in the air that water droplets formed on my eyelashes while i was running. I was jogging in the dark with streetlights to light the pathway, thinking I’m pretty lucky. Here I am, doing life, getting my quiet time in the morning, just running the block. (A little voice in the back of my mind was also thinking my pace has slowed since I’ve been taking it easy.)

I am still able to keep up with life. My concerns now are the same as anyone. Am I spending my time the right way, with the people in my life I love? Am I focusing on what really matters? Am I taking care of myself: extra iron, plenty of protein, enough sleep, exercise, time for rest and relaxation?

Life at 18 months is good for me. I do snack all the time because if I eat too fast or too much, certain foods can make me feel bad.

Foods I take my time with (consume half, wait 15 min, consume 2nd half):

  • greek yogurt
  • 6 oz glass of 2% milk
  • lunchable
  • really fatty foods – think nachos with loaded greasy queso

Foods that just go well

  • Spaghetti with sauce or meat sauce
  • Lasagna
  • Non-processed homemade meal (meat + veggie + starch)

Foods that go ok, but chew well

  • hamburger
  • tomatoes or veggies/fruits with skins

Hit or miss foods

  • Reheated chicken (no clue why I’ve had problems with this. It’s the reheating…
  • Rice – Can go ok or can get stuck
  • Chugging water really fast – just gets stuck (this is when I forget I’m missing a stomach)
  • Raw bell peppers
  • Pickles – the skins

I’m sprucing up the blog a little bit, adding categories and trying to focus on what will help fellow CDH1ers or folks who have had or are going to go through a gastrectomy. Since life at this point is so far from gastrectomy, I’ll likely focus on food, exercise, health & living life to the fullest.

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)
cheese
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

Scars…
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.

Weight…
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.

13 Months post total gastrectomy

A lot of the Facebook group discussions talk about energy level, food and weight post TG… Also an improved look at life and getting out there tackling items on your bucket list. So here’s 13 months out and what my current view is on everything..

Energy level.. I’ve always been pretty aggressive with my schedule and manage to have a ton of energy. Though I still find that every once in a while if something disagrees with me, it’ll make me feel energyless for a good 10-15 minutes. If I’m at home, I just lay down or take it easy until “the fog lifts”. If I’m at work I can sort of walk it off.

When I get busy and am enjoying life, not feeling hunger is kind of bad. It’s super easy to lose weight when you don’t get that traditional feeling of hunger. And it’s hard to stop to eat with as long as it takes me to eat.
So after some vacationing, it’s time to go back to work so I can get back into my schedule and food routine.

Popcorn!! I can still put away some major volume of popcorn! Might not have all the nutrition, but sometimes a calorie is a calorie when you just want to hold your weight!! I was holding my weight well until our vacation, but I dropped some weight. It’s ok to eat all the time at your desk, but it’s harder to keep that up when you’re on the go. It’s also tough to eat every meal out where you feel bad for how slow you are, instead of just snacking away at your desk. My desire to “fill myself to the brim” every meal has gone away since I can usually hold my weight without the discomfort of getting that full. I hope to put some lbs back on in the next month and hydration has a lot to do with a few pounds here and there lost.

Vacation!! Remembering to stop your “busy life” and do the things that matter…my shout out to bucket lists. So we road tripped the family about 3000 miles round trip from Texas to the Grand Canyon and back. It was awesome and I’ve included pics below.

Scars after 1 year.. My scar looks amazing and I rock the two-piece bathing suit. The actual incision has faded so much you can hardly see it. I just claim my feeding tube and laparoscope incisions were bullet wounds because that sounds cool!!

Weight loss! My weight loss has stayed well controlled minus the vacation. This was not a lazy poolside vacation. This was a lot of hiking, an 11 mile Grand Canyon rim bike trip pulling a kid trailer and some eating in between all the cool stuff we did. My kids were exhausted! The only complaint I have is a desire to put on some more pounds… My shoulders look scrawny and my ribs show through too much. All in weight loss was from 126 to 114.

Life is pretty much busy and normal. I just get a reminder here and there that I don’t have a stomach.

Here’s some vacation pics.

20140716-224238-81758673.jpg

20140716-224442-81882533.jpg

20140716-225048-82248479.jpg

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!!!

Small but Perfect II

So I get a bit focused on what yummy breakfast to eat after an early morning run. And again, the focus is on small volume but super yummy foods.

I’ve been savoring English muffins lately. So this morning, I made scrambled eggs, grilled the muffins with butter, topped off with a slice of tomato, a slice of mozzarella cheese, a dollop of grape jelly and a dash of salt… Voila! The perfect stomachless breakfast for me. On a side note, I do like an over easy egg as well, but scrambled is the only kind my kids like. So I make a big batch of scrambled eggs and reheat on busy mornings for 20 seconds in the microwave.

20140507-123040.jpg

On the exercise front, running is going very well. I just signed up for next year’s half marathon again!! My only battle now is laziness; getting up at 5AM seems to be the only way to incorporate exercise into my day. And I’m not much of a morning person able to hop out of bed! I never regret it when I do; it’s just the mental debate I go through while lying in bed and the alarm goes off so early.

I’m also trying to incorporate some Cheerios everyday in my diet to help battle what I think is a slight iron deficiency. (Cheerios have 45% of your daily iron. Not sure how much I absorb since my duodenum was bypassed and the majority of iron is absorbed there.) And I will try to take one iron supplement per week. I had noticed my nails bring more brittle than usual and believe it to be a sign of your iron level being low. I feel like I’m getting more energy as well. Will see how that goes.

Small but Perfect

I’ve found myself craving making complex tasty foods in the appropriate small portion sizes. I’d say it’s similar to Steve Dang’s post about beautiful food. (Shout out to Steve!) My food is certainly not beautiful, but it had all the wonderful flavors imaginable.

Here’s my hamburger slider with a creamy cilantro and a ketchup sauce, plus a slice of tomato and iceberg lettuce. I seasoned the ground chuck with Worceshire, garlic, salt and pepper. And I grilled the mini bun with butter…yum!

Here is my mini work of art! Specially sized for the stomachless crowd.

20140504-185950.jpg

How to Eat Chiptole Without a Stomach! 11 months post op

I do love Chiptole’s food, and I can now eat a hearty portion. The weather here has been amazing, and they have a patio, so count me in!!

It’s easiest to order the bowl so you cut the tortilla out. And the pork/carnitas seem to have always gone down the easiest. Also, the bowl is easy to take your leftovers and to reheat. Their portion sizes are giant!!

Since I can now eat raw veggies without them coming back up, I added the mild tomato salsa and a little bit of lettuce for some crunch!! I prefer black beans and go with the white rice. For calories, I go ahead and add sour cream and cheese….yum! I like the spicy salsa too!

Here’s what I ate and then took the rest home! All stayed down. No discomfort.

20140501-131806.jpg

Happy eating my stomachless friends. Remember, I’m almost a year post-op, so if you just had the surgery, this will be a bit much. This is just a sample of where I’m at 11 months after surgery!