Daunting

This is what I now find daunting. It’ll take some time, but lots of protein and calories. Fries usually don’t happen. I’ve found the sandwich easier than nuggets. Dry chicken is so hard to chew up.

20130725-140053.jpg

I did finish this sandwich, but know that the first half I ate in the time other families came and inhaled their food and left. Good thing my kids playing at the playground gives me time to finish.

I refrigerated the rest, took a nap and ate the second half when I woke up. Yup, kinda takes forever. The lady at Chick-fil-a asked to throw away my trash bag, and I had to tell her that was all the leftover food to take home. I have as much food waste now as my kiddos! Yikes!

It’s like a Rollercoaster

So last night, in a feeble attempt to get in my final calories for the day, I was able to put down an entire cup of Cheerios with a cup of whole milk. Afterwards, I was surprised how quickly I was able to eat it all…the whole bowl in one sitting without soggy Cheerios. Afterwards, my mouth starts watering like just before you throw up. I was sitting there hoping it wouldn’t come up because that kind of negates all my hard work eating that bowl! Luckily it passed and my work wasn’t lost.

I find it hardest to eat in the morning. The simple answer might be that I’m not a morning person. Who knows… By the time I get myself and the kiddos ready, I’ve lost an hour of time. I try to use that time for water, but who knows. The morning is also that moment of trepidation before I step on the scale….did I lose weight yesterday? If I were to lose as many pounds as some folks I’ve talked to, I’d end up below 100. That would just be bad… Let’s call that my motivation.

Circle back to this evening. I ate a lot of peanuts today. 1 oz = 170 calories. Small volume, high calories. Maybe that extra protein kick helped. I certainly feel weak/crappy when I haven’t gotten enough food in. I played with the kids, then went biking with them in the trailer. They weigh a lot, so it was quite the effort. Just hope that doesn’t eat into my calories too bad, but it felt great to get the leg muscles crunching and the cardio up. I can’t chug water, but I made a valiant attempt afterwards. I also felt great afterwards; reminds me exactly why I’m a runner! Spent the rest of tonight eating and drinking water.

I do have some negative moments. Like in the cafe this weekend, knowing my body is starving and trying really hard to eat a good quantity. It’s taking all my energy, and beside me is a big lady inhaling a massive plateful of meat and sides. That was my “Really? Why me?” moment.

Shaking the thought off. There’s a reason for this. It’s actually not that bad. But I think everyone post gastrectomy must have their moments. I think you just have to keep trying over and over again with every meal and not let it get you down. I might have more failures now with food not staying down, but as times moves on, those failures should be fewer and fewer.

Have a good evening.

Cold Meals

Eat your meals slow & steady. That’s how it’s going to get all my calories in. It means I eat all day long. And my baby analogy continues on…just like when caring for a baby, post-gastrectomy means a lot of cold meals (My babies hung out with Murphy because they’d only cry, poop or wake up when my food was piping hot and ready to eat.)

Food/drinks I’ve done ok with lately:
Ice cream
Soda
Beer

Yay!! Normal is coming around very quickly for my very speedy recovery. And my energy levels are getting better and better all the time. The good thing for my kids is that my body seems to be as tired as theirs. I guess they’re growing and I’m repairing. It helps me get respect for how tired little kids can get.

On a side note, the shooting pains in my side from I’m guessing where my feeding tube used to be is really annoying. I’m not a happy person when I’m in pain. Luckily it just seems to come and go in random spurts. It’s not that often, but when something hurts, it’s easy to focus on it.

Also, my spitting back up of my food still happens usually with the first bite when I don’t chew well enough. Funny to say sometimes when I initially sit down for a meal (not snacks), I kind of forget I don’t have a stomach. Then my body reminds me. Ironically I do better eating on the go. If I’m driving and eating, I must eat slower and chew more thoroughly.

I must say I’ve been encouraged by the comments I’ve gotten from people about to have to go through this. It reaffirms I need to keep up this blog with details of my experience for others. I give a lot of details about what I go through for their sake.

But it’s just an extra focus in my life right now. Life is getting back to normal. Maybe this was the hurdle in life I was supposed to go through. I can have my moments watching people inhale their food while I slowly work and work at it. They don’t know I don’t have a stomach and I sometimes wonder if they just think I have some kind of eating disorder. Other than my handful of bitter moments, life is good and I’m so blessed and happy.

Hereditary Diffuse Gastric Cancer

My blog is a bit backwards. As I’ve been posting on a helpful Facebook group called “Support Group for Partial & Total Gastrectomy Patients” (very helpful resource), I realized that I haven’t discussed why getting your entire stomach removed is the correct treatment plan for someone with the CDH1 mutation.

CDH1 also puts you at a 40% increased risk for lobular breast cancer, but I’m not planning on a double mastectomy. Why, you may ask? Because present screening for lobular breast cancer (alternating MRIs with mammograms every 6 months) can catch the cancer in time. But for stomach cancer (linitisplastica), current medicine’s screening doesn’t work. This is a big statement, so let me explain how I got to that belief, along with my team of doctors.

My dad and his cousin both died of stomach cancer. After seeing this, my aunt had annual endoscopy screenings. 4-6 months before she was diagnosed with stage 3 stomach cancer, she had an endoscopy screen come back clear.

I met with Dr. L, a gastroenterologist, prior to my surgery. He said, “I used to think a total gastrectomy was draconian. I have been disproved.” He used to think increased endoscopy screenings would catch the cancer early enough. But every CDH1 mutation patient who screened negative had a stomach pathology positive for cancer post surgery. Dr. L performed 100 biopsies during my endoscopy and found nothing; my post-surgery stomach pathology came back with 4 cancer spots. And as you read, after a stage 3+ cancer diagnosis the average survival rate to 5 years is <25%. My dad, aunt & cousin all survived about 3 years post diagnosis. When I walked into my genetic counseling appointment, I made it clear that if I was positive for the gene, I wanted to pursue the total gastrectomy because current screening is ineffective. I was not doubted or questioned; in fact, I was further validated. At MD Anderson, they draw patients from far away for their high level of experience. These doctors have seen time and time again that today's available screening technology just doesn't work. We asked where the research is today, and they said some work is being one to use a kind of spray dye detection. My prayers are that through continued support of No Stomach for Cancer, screening research will progress and be available. With the average onset of this cancer being 31-38, I'm not waiting. I'll take what available medicine is available to me now. So, why can't doctors detect it? The keyword is diffuse. When you think of most other cancers, doctors can usually find a polyp or tumor or something red and raised...I'm no doctor, but basically you can see something. When the cancer is diffuse throughout the stomach lining, by the time you see something, the cancer has already progressed to stage 3 or stage 4. At this point, it could have metastasized to the liver or somewhere else that might make it too late. And since the symptoms of stomach cancer are similar to acid reflux or are easily attributed to a bad diet, by the time most people get checked out, it could also be too late. That is how I arrived at my conclusion. I hope this discussion can help others with this difficult decision. And for me, if I couldn't effectively argue my reasoning to disbelievers, how could I go into this surgery, no matter how scared I was?

Feeding Tube Removed!! – Almost 6 weeks post op

Today, I said a fond farewell to my feeding tube. According to the doctors, I’d only lost 1 lb since I was last in and that’s been with almost a week off my feeding tube. But the biggest component to the decision was the results of my blood test. My cellular level protein stores (cannot remember the fancy medical word right now) were at a high enough level. Their entire emphasis has been on protein since that’s the main rebuilding block your body uses to heal. Hooray for protein shakes and greek yogurt!

The nutritionist said I’m doing awesome. To get in ~2000 calories a day, it takes a lot of effort. It doesn’t look like much when I read through my food diary though. When every meal feels like you just ate a giant Thanksgiving feast, it feels like so much effort to graze all day long! I mentioned that to the nutritionist and she said that constant fullness will subside gradually over time as your intestine stretches in order to become my new reservoir for food. Other patients further down the road had mentioned around the 1 year mark, a lot of people can get down to 4 meals a day.

I also wanted to post a photo. This one was taken a little after 3 weeks post op of me and my husband at a friend’s wedding. I took a good nap to prepare for it and doing something fun, happy & normal was just what I needed. This was the first & last dress I’ll ever have to buy with the criteria that it needs to hide my feeding tube. lol

20130718-193558.jpg

And Good Again…

I think the bad days are to teach you some things. Yesterday I was reminded to check nutritinonal info for restaurants. Today was great though…no hidden sugars!

I had lost a lb or 2 the other day since dropping the feeding tube and have been consuming the max of what my new digestive system can handle to try to stabilize my weight. It seems to work as long as I don’t go for a run yet! I’m consuming right at 2000 calories a day as my goal. My body certainly metabolizes that much a day because when I do 1500, my weight drops. And according to myfitnesspal app, one day I did 2700 calories and barely ticked up in weight.

Also, it’s good to mention I’m almost 6-weeks post gastrectomy and recently realized I feel better able to take bigger “gulps” of my drinks, rather then taking small sips. But while my body builds its new reservoir to replace my stomach, the space fills quickly. A buzz word that comes to mind is having to consume my food and water “ratably” thoughout the day. Other folks over a year post op say they can just about do 3 round meals a day. I’ll see how it goes for me.

I did some roasted chicken today and dipped it in some mashed potatoes and cream gravy. It’s as though the mashed potatoes and gravy helps the chicken go down. It does take a long time to chew chicken, but it’s such good protein and I really want it in my diet.

And I’m able to eat a whole large banana during the day, but I break it up into two halves. This seems to prevent any sugar overload.

Also to note, I wanted to get all my doctor’s visits in before I went back to work. (unrelated to gastrectomy). As a precursor to one visit, I had to pass a computerized pulmonary screen where you’re supposed to over exert your lungs on the exhale. I failed miserably; they’re crediting it to my recent surgery. Guess I’ll get to go redo that appointment later!

Have a good night!

My Food Diary

I’m building this blog in the hopes it can help other families going through this same experience. A friend’s surgery is tomorrow and when I got to talk with her, I realized my food log so far will help people understand what I’ve been able to eat post-op as each day progressed.

As for what I ate in the hospital… The first 4-5 days, I ate/drank nothing while the esophagus to small intestines connection healed. My IV kept me hydrated and my feeding tube was starting up to help me get nourishment. Then I was allowed to do liquids for 1-2 days. If it went well, it was onto a soft diet. The nurses were helpful and reminded me to just go slow and take it easy. Just start with sips. Clear liquids went well. I was pushing to go home Friday, but then my hydrocodone reaction happened. I stayed in the hospital because I felt horrible and hadn’t done much soft food to prove I’d be ok after I went home. Got my heart to heart with the surgeon about how he’d not want me to go home and get dehydrated and very sick, then have to go to the ER. I’m a stubborn gal, but I’m secretly smart enough to know he was right. And this surgery is so unfamiliar to doctors outside of these specialists, I wouldn’t be comfortable discussing complications at a local ER. So I made sure my soft breakfast and lunch went down well that Saturday morning before I was discharged. The nursing staff increases your feeding tube very slowly when you’re in the hospital, so those first days, you must be losing weight. The combination of my pre-surgery liquid diet day, my days without eating solids and my soft food day while my my feeding tube rate was amping up, I lost my 5 lbs.

Eating was all slowly uphill after that, minus my eggo morning and goldfish afternoon. Here’s my detailed log. Hope it’s helpful. I originally logged my liquid intake, but once I was able to do 3 large water bottles a day, I stopped logging liquid. I just check my pee…too yellow, focus more on hydration. To eat all the foods I listed below, just chew about 4 times longer than you think is necessary. My problem is usually on the first bite when I’m excited about a tasty food and forget to chew, chew, chew… And just know most food takes me a while to eat.

Food Diary

6/15 – after left hospital
5 cans
6oz water
12oz vitamin water
Piece of garlic bread
3pm – 20 ml ibuprofen
8pm – 20 ml ibuprofen
9pm – 1/2 cup of spaghetti with meat sauce

6/16
5 cans
1 scrambled egg. Ate too fast. Hurt going down
1 cup vanilla yogurt. Maybe too much sugar, not fake sugar kind
1/2 pbj sandwich
Some fritos
1/2 pbj sandwich
3/4 cup jambalaya (took forever)
3 bites ice cream sandwich

6/17
5 cans
Breakfast bar
2 slices cinnamon toast
Spaghetti with meat sauce
20 oz water and a 12 oz G2

6/18
5 cans
Breakfast bar
Greek yogurt with strawberry stuff
Spaghetti with meat sauce
Half bowl honey nut Cheerios with almond milk (too much sugar. Felt a bit off afterwards)
20 oz water bottle
12 oz vitamin water

6/19
5 cans
1 slice cinnamon toast biscuit/ham/eggs empanada
Cup shredded chicken and turkey sausage jambalaya
12 oz water
20 oz Gatorade
Pork loin, mashed potatoes, green beans
More water

6/20
5 cans
Breakfast bar
Bite of banana
Some coffee
20 oz Gatorade
Snack bag of cheez its
Half bowl la Madeleine tomato basil soup
Half slice bread with jam
Remaining bowl of soup
2 half slices bread
6 grapes (spit out skins)
Half slice of cantaloupe

6/21
118 lbs
5 cans
Empanada (1 biscuit with egg &ham)
Cup and 1/2 coffee
Half large banana
Snack bag of cheez its
2 oz Pork loin
1/2 cup mashed potatoes
1/2 banana
2-3 oz chicken fried steak
1/2 cup mashed potatoes
3/4 yeast roll
1/4 cup peas
1/4 cup banana pudding
20 oz Gatorade g2
18 oz water

6/22
117.4 lbs
Biscuit empanada with egg/ham
1 strawberry
1/2 slice cantaloupe
1/2 double Dave’s pizza slice
3 bites vanilla cake
28 oz water
20 oz vitamin water (no calories)
1 baked chicken strip
1/2 cup peas
1/2 cup Mac & cheese
1 cheese slice

6/23
117.6
5 cans
1 bacon slice
1 eggo with 1 tbsp peanut butter
1 cup coffee
2 oz baked chicken w/ sour cream/spice/breadcrumb breading
1 cup baked beans
1/2 baked potatoe with 1 tbsp margarine
1 peanut butter cookie with Reese’s pieces
1/2 cup goldfish
40 oz water
Grilled cheese (one slice) with 2 tbsp butter

6/24
118.6
5 cans
1 eggo with 2 tbsp peanut butter (sugar crash, yuck)
1 slice pumpernickel bread with 1 tbsp butter
1 cup spaghetti with meat sauce
1 cup chicken noodle soup
1/2 cup cheez its
28 oz water
20 oz Gatorade g2
1/2 chocolate chip cookie
Tried bite of chicken patty (threw it up)
Tried chicken kabob with rice (also got stuck & threw up)
1/2 cup oatmeal success

6/25
120 lbs
4 cans
Breakfast bar
3/4 cup oatmeal
20 oz g2
20 oz water
1/4 cup goldfish (felt like puking)
1-2 oz baked chicken ( nausea..not enough protein? Dehydrated?)
1 bread roll
1 oatmeal raisin cookie from Zoe’s
1/2 cup spaghettios

6/26
119 lbs
4 cans
2 mini sausage biscuits
1/2 cup coffee
3 bites banana
1/4 slice bread with 1 tsp cream cheese
1 small avocado
2 slices toast with 1 tbsp margarine
8 oz almond milk with 1 scoop protein powder (GNC wheybolic)
12 oz g2
20 oz water
1/2 hot dog with bun
1/2 cup cheez-its

6/27
118 lbs
4 cans
I egg/biscuit/ham empanada
8 oz almond milk with 1 scoop GNC wheybolic protein
HEB butter tortilla
1 lg banana
12 oz Gatorade g2 grape
40 oz water
1 cheese pizza slice
1/2 proasis protein shot
1 cup bean and chicken chili
1/4 cornbread muffin
1 Oreo

6/28
117.8 lbs (hydration from heat?)
4 cans
1 empanada
2 oz almond & 6 oz 2% milk with 1 scoop protein powder
1 HEB tortilla
1 cup chicken noodle soup
40-60 oz water
1/4 cup cheez its
1/2 hot dog with bun
1/4 avocado
Few bites meatloaf and mashed potatoes (meatloaf gross. Too hard to chew down. Found adding hummus as a binder with each bite fixes that yucky texture.)
6 oz grape g2 Gatorade

6/29
119ish (late weigh after food)
4 cans
3 bites cinnamon roll
2 slices cinnamon toast with 1 tbsp smart balance
Almond milk protein shake
3/4 pizza slice
1/2 cup mashed potatoes
Almond milk protein shake
2-3 oz chicken
1/2 oz fish
1 new potatoe
1/2 role with 1 tbsp butter
3 bites cake
40 oz water? (1 20 oz bottle & 1 glass at wedding)
10 oz Gatorade g2
Wedding, bday party & very hot out

6/30
117.2 (seem dehydrated)
4 cans
1 egg scrambled
1 piece bacon
1/2 tortilla
1 1/2almond milk protein shake
1/2 cup bean chili and some chicken
40+ oz water?
6 peanut butter crackers
3 oz smoked chicken with a little cornbread stuffing
4 oz yoplait Greek yogurt strawberry

7/1
116.8 lbs
4 cans
1 slice bacon
2 slices cinnamon toast
1 protein shake with almond milk
1 large banana
1 package (6) peanut butter crackers (my new staple. Easy to eat. 180 calories)
1/2 cup chicken/bean chili
3 oz salmon
2 tbsp hummus
Some cous cous
1 chocolate chip cookie
3 bites cupcake
1 serving cheez its with 2-3 tbsp hummus

7/2
Forgot to weigh. At night 118
4 cans
Protein shake with whole lactose free milk
1/4 cup cous cous with 2 tbsp basil hummus & 2 oz ground hamburger
Peanut butter & jelly sandwich
1 oz chicken
3 bites cupcake
1 yeast roll
1 cheese slice

7/3
117
4 cans
8 oz whole milk with 1 protein scoop
Cous cous with 2 tbsp basil hummus with 2 oz taco meat
6 peanut butter crackers
40 oz water.
6-10 oz Gatorade
7-8 chips with salsa
3 oz of chicken enchilada
1 oz margarita 😉
2 small yeast rolls

7/4
117.5
4 cans
2 slices cinnamon toast with 1 tbsp smart balance
8 oz while milk with 1 scoop protein
30 oz water
1/2 cup coffee
2 peanut butter crackers
5 wheat thins with 2 tsp cream cheese
1 oz pork chop
1/2 cup Mac & cheese
2 peanut butter crackers
20 oz water
1/3 coke zero
1/2 grilled cheese sandwich with 1 tbsp butter

7/5
117.4
2 baby sausage rolls
1/2 glazed donut
2 oz rotisserie chicken with 2 tbsp basil hummus and 1/4 cup large cous cous
20 oz water
1/2 thick tortilla
4 chick fil a nuggets
1/4 chick fil a fries
8 oz chick fil a diet lemonade

7/6
117.8
4 cans
1 pillsbury cinnamon roll
1 Greek light & fit yogurt
1 tortilla
8 oz protein shake with almond milk
3/4 grilled cheese sandwich with 1 slice velveeta and 2 tsp butter
4 tortilla chips with 1 tbsp guac
1/4 cup mix of Oreo,cream cheese & cool whip
1 small sausage ball in sauce
1 shrimp
4 saltine crackers (grazing at MIL house, hence the random bites of food. Very conducive to stomachless peeps)
5 ritz crackers
4 fish sticks
1/4 cup fiesta beans
1/4 doughnut
50 oz water
1/2 coke zero

7/7
117.6
4 cans
Greek light & fit
2 slices cinnamon toast with smart balance
3/4 of bun length hot dog with bun. 1/5 large mango
3 peanut butter crackers
1/4 cup cheez-its
1 pulled pork slider with 2 oz pork and 5 pickles

5 Weeks Post Op

Still going well. Have my next follow-up tomorrow morning with the doctor. Hopefully everything goes smoothly. After as well as dropping to 3 cans in the feeding tube went yesterday, I bet I can go down to 2 cans safely to maintain my weight. We’ll see what the dietician says.

I was able to walk a known distance today… A little over a mile. It’s hot. At 9:30 am, it’s 95 and humid. Able to walk with my water and keep up my hydration. Just focusing on protein with some substantial carbs in my meals and it’s going well.

I did an afternoon shake with vitamin D milk and I must say that stuff upsets my gut and is far too dense. When I did 2 almond milk protein shakes in a day, I started getting itchy skin…too much almond must be just too much. So, I think I’ll stick with 1 almond milk protein shake a day and call it good.

I’m liking this yogurt and bagel with peanut butter breakfast also. I can do the yogurt early and then take the bagel with peanut butter along with me when I take the kiddos to school. I focus on water before and after. Seems to help! (For perspective, the whole breakfast ‘process’ takes over an hour.)

And now that I dropped a tube feed can, I think I’m hungry in the morning and more motivated to eat. The morning has been the hardest to motivate myself to eat. I’ve just felt “off”. But I’m thinking that’s just because I’m not at full hydration. (Yes, still unable to identify exactly what hunger is/feels like post total gastrectomy.)

Off to sleep now, goodnight.

The Happening – Then vs Now

What do you do when you feel perfectly healthy and it’s the night before you are scheduled to go to the hospital to have surgeons cut out your stomach? For me and my husband, you avoid going to sleep as long as possible. And when there’s a creepy M Night Shamylan movie on tv, you lay there and watch it. The good thing is that movie was so creepy and good, it was the perfect distraction from my impending reality. By the time the movie finished at 2 AM, we were so exhausted, we fell right asleep. (perfect)

Movies are like music. Watching one or listening to one can bring you back to a place and time. So, The Happening came on FX yesterday and I couldn’t help but keep it on. I was sitting there thinking it was crazy before surgery with all the fear and unknown and stress, like a dark cloud hanging over our heads.

Jump forward to ‘The Now’. This whole thing hasn’t been so bad. I don’t know why I’m recovering so well, and I do believe other people have many more struggles than me with recovery. But for me, it’s been pretty good. I’m certainly not full strength, but everyday I can eat a bit more and I heal and become stronger. I’m getting more energy to play with my kids and keep up with my OCD habits. (Cue hubbie comment: “Uh oh, mom must be starting to feel better if she’s doing laundry.”) Don’t get me wrong, the hospital part isn’t pleasant, but just like my c-section recoveries your memory of the pain fades. (I believe hospital staff mentioned some of the drugs reduce your recollection.) This time around watching the movie, I was taking it easy, surfing the web and enjoying life…no more dark cloud.

My fellow gastrectomy friend Aimee has been giving me tips and advice and answering my questions. Before my surgery, she said, “I’d rather be on this side of the surgery than yours.” After my surgery, another friend told me I looked relieved. I’d have to agree. So, that’s my before and after comparison.

Onto specific food stuff. Here’s what I was able to eat today, very slowly. It doesn’t look like much, but it’s a real effort now.
Dannon Greek Light & Fit Yogurt
1/2 Thoms cinnamon raisin bagel with peanut butter
1 whole turkey & cheese sandwich with a basil hummus spread
1 8 oz almond milk with a scoop of GNC Wheybolic vanilla protein powder
4 peanut butter crackers
1 Whataburger jr hamburger
Some mango & blueberries (desperate again for fruit and spitting out the skins)
1/2 large banana
Spoonful of some crazy oreo/cream cheese/cool whip dessert from my mother-in-law

I try not to mix drinking with eating, like the dietician recommends. My liquids have really improved and I’ve been focusing a lot on them since we were out in the heat today.
63 oz water (trying to finish now)
1 12 oz coke zero
4 oz Gatorade g2

To note, I’ve always been lactose sensitive, so I’ve played around with almond, lactose free (read…regular milk with the lactose enzyme added) and soy milk for a long time. So milk alternatives aren’t a change for me for my protein shakes. And I do the light & fit yogurts and g2 Gatorade in order to stay away from sugars. I’m not sure what my tolerance is exactly for sugar, but life requires moderation, and now my body is quickly reminding me if I mess up. After my eggo incident and feeling a bit off after some foods, I’d rather not push it.

Given how well my calorie intake is going, the dietician recommended I try dropping one can off my nightly tube feeding. We’ll see how good my morning weight is. I’ve stayed stable to the pound every morning lately with 4 cans plus my oral intake. Yes, throw something at me, hate me…I have a high metabolism. Though, I have been walking, so I deserve some credit for that. Every can is 285 calories. If I drop one, I hope I can make it up.

Well, off to sleep for me. Goodnight.