Monthly Archives: August 2013

12 Weeks Post-Op!!

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Wow, I can’t believe it’s been twelve whole weeks since I had my surgery! I’m back at MD Anderson for a checkup with the doc and a nutritionist follow up. I’ve asked them to tell me what my B12 and iron levels are, in addition to my protein levels. I will update this post once I know. So far I only know that my protein levels were fine and my nutritionist was waiting for the other results. I’ll call her tomorrow for my B12 and iron.

I’ve found that I can eat an entire Chick-fil-a chicken patty if I do it without the bread. Bread just seems hard. But if I want some tasty bread, like that bread Panera makes, I can eat it separate from other foods. As long as I’m careful and chew a lot, I can do an entire bread side, crust included (and isn’t that the best part anyhow?).

Being at MD Anderson isn’t my favorite place to be. I’m not a person who really ever cries, but when we drove away from this place after surgery, I did cry. Hubbie thought it was pain from bumps in the road driving home, but I told him I had no idea by I was crying…just never been so happy to go home.

Every time I’m here I see several reoccurring things. The power of the human spirit. People have hope, perseverance. People are fighting for their lives here or supporting a loved one who is fighting the battle. And people fight hard, many with such a great spirit. In a hustling city where people are usually too busy to slow down, people have a common bond here. They see you lost or looking like you need help and they converse with you. People openly share their stories in waiting areas. It’s a community of encouragement because you don’t know the story of the guy sitting across from you, but you know they have one. Mine is that I’m the girl who looks healthy; I’m just secretly missing a stomach.

The hardest thing about coming here is seeing people that are so sick, especially on the gastrointestinal floor. You see people who, like my dad, are so skinny they look like they’ve been in a concentration camp. It reminds me how brutal cancer is when it comes to your digestive tract. It seems like the cancer fight is coupled with such extreme, severe weight loss. This place throws me back to the time in my life when I watched my dad go through all this.

Buy my saving grace is my story is different. I’m healthy; my surgery was definitively curative. So even if my stomach pathology was stage I cancer, I didn’t fight and won’t ever have to fight the hard battle. And for that I’m grateful. The battle I will fight is coming out of this to run a half marathon. I get to push through that on my own terms. Frankly, that’s the way I like it. And thanks to genetic medicine, I had that choice.

The Spit Factor

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So it’s taken me a little while to figure out what exactly is happening with some of my first bites of food. I have to spit a bunch, then afterwards I can generally finish the entire meal… I do believe I forget how much I need to chew in the first few bites, so food goes down that’s too big for my new plumbing. I personally don’t usually feel it being “stuck”, but it must be. And since saliva is the first step in digestion, my body starts cranking up salivation (I kinda sound like Pavlov’s dog right now.) I guess this is just my body adapting to what it has to do without a stomach.

Today’s foods were:
Tortilla with peanut butter
Watermelon..yum!!
2 more spoons of peanut butter (needed calories and didn’t bring a lot of food I’m not tired of. For now, I can eat peanut butter all day long. Yes, I should be eating more of my cashews.)
1/2 cup oatmeal sweetened with Splenda
2 hot dogs (no buns)
1 new potatoe
Bowl Panera broccoli cheddar
1 Panera bread baguette

I’ve found breads are too filling with meals where I need protein. I was able to eat the baguette way afterwards. Also, diet sodas go well. I hope artificial sweeteners aren’t horrible for you because I’ve been leaning on them a lot.

Have a good night.

Is that what bile tastes like?

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So I know that technically I’m supposed to sleep with my head propped up a bit to let gravity hold everything in place. But I’m me, so how I actually sleep is completely flat on my “tummy” (still don’t know how to strip the word stomach out of my vocabulary). In the middle of the night, I don’t even use a pillow. I just lay completely flat. So, kids have been waking me up about every night for the past two weeks. After one wakeup, it felt like I needed to burp, so I did and….with the most disgusting aftertaste ever. Wow, yuck. It seems that the closer to bed I eat, the more careful I have to be about trying to sleep a little propped up. I just get a bit freaked out if I know I haven’t eaten enough during the day and try to do 2 cups of Cheerios in 2% milk. It’s a big bowl, but at the end of the night I can do most all of it. If I don’t eat immediately before bed, this doesn’t normally happen, so yay!

I generally have felt more light-headed/dizzy than I ever did before my surgery. Murphy’s law decided this would be the week of my life to need a root canal, so I got my blood pressure taken. It’s not officially low, but it’s lower than I usually see it. And really though, who has low blood pressure before a root canal? That can’t be normal. So I started reading some articles, and low blood pressure can have a handful of root causes. When I read through, it seems like anemia and hydration are my most likely culprits. There are also multiple types of anemia. I’d assume my daily B12 drops are keeping B12-based anemia at bay, so I have to guess iron deficiency is my problem. The article said a lot of your iron absorption is in your duodenum. Since mine has been bypassed, it seems fair this could be my problem. I’ve emailed my nutritionist to confirm if I should take iron. I had to take iron supplements near the end of both pregnancies since my counts got low near the end of both pregnancies. We’ll see how it goes.

A great positive to mention….for what seemed like “forever” after my feeding tube was removed, I’d get those harsh shooting pains on my left side about where I assume my small intestines is. They would come erradically and would make me an unpleasant person. I realized this week, that pain has completely stopped!! It must have been 2 weeks+ since I can even remember it happening!

On a side note, I hiccup a lot. And it’s obnoxious.

That’s all I’ve got for tonight. I’m exhausted. Have a good evening.

My weight, work and Genetics 101

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Now that I’ve returned back to work, my days are certainly much busier. But the good thing about work is you’re more aware of the time and keeping to a schedule. I’ve found if I can eat during the entire day at work, I actually managed to gain a pound the other day. I’ve since lost that pound, but it is reassuring knowing I can gain weight with enough focus.

It’s certainly easier to lose weight than to gain weight. Post-gastrectomy I’m fighting fullness every meal, which is why I have to eat so frequently. More and more food seems to stay down. I’ve read blogs from other folks who had all their food come back up because they had a stricture where their espophagus was reconnected to their small intestines. I’m lucky mine hasn’t done that. My surgeon specifically won’t perform the entire surgery laproscopically because he hand-stitches the connection instead of using staples since the studies show less cases of stricture post-op.

My CDH1 genetic curse is kind of like the gift that keeps giving, albeit a gift you just don’t want. We’re going through the same genetic counseling process now to confirm whether or not my brother has the gene mutation. I have been praying and believing he will not have it. We know the odds for this mutation passing along are 50/50 and if you look at my generation in the family tree, my brother being negative would make my extended family perfectly fit that 50% positive and 50% negative statistic.

Going through the genetic testing discussion helped me understand the genetics around this so much better. Our CDH1 mutation is a letter change from G to T on a specific nucleotide on chromosome 18. The basic building blocks of DNA come from the 4 nucleic acid bases, A (adenine), C (cytosine), G (Guanine) and T (thymine). C is paired with G, A is paired with T.  Because of my letter change, it impacts how the e-cadherin protein was built in my former stomach tissue. E-cadherin is what helps the cells bind together and the protein itself functions in cancer/tumor suppression.  So my mom gave me a good e-cadherin gene and my dad gave me the mutated one. Most people have 2 good ones, so if one falters out, the other is a failsafe. If mine falters, I’m screwed and that cell becomes cancerous. You never know which cell will become cancerous and when. Your body is just constantly regenerating millions of cells for stomach tissue, and it only takes one screw up. This makes the cancer diffuse…there’s no polyp or red mark or anything to let you know a single cell has turned cancerous. And by the time you can see something, you’re probably already in an advanced stage of cancer.

I know that endoscopic screening for HDGC is ineffective. I am proof of that. But the gastroenterologist mentioned something I hadn’t heard: even when some patients present with symptoms of stomach cancer, they still sometimes don’t see anything with the endoscopy.  According to nostomachforcancer, gastric cancer is the second leading cause of cancer deaths worldwide. The 5-year survival rate is 26-28% overall, being so low because early detection is difficult.  All of this information further validates just how right my decision for total gastrectomy was.

I also found this blog of a man who valiantly battled linitis plastica, the same stomach cancer that killed my family members. When I read through his blog, I felt like I was reading my dad’s story. http://paulsgastricjourney.blogspot.com

Informative Article

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This article I’d stumbled upon before about the impacts of total gastrectomy. Thought I’d share. It also has some photos of your new plumbing with”TG” (total gastrectomy). And questions about nutrient absorption post surgery. Gotta watch my iron levels!

http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/radiganarticle.pdf

Kind of Tired

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It’s my second full week back at work, and it’s going well. Since I have the energy level of a small child, I’d have to say I’m a bit tired, especially by the end of the week.

I’m curious what my vitamin levels are right now. I keep up with my gummy vitamins and sublingual B12 drops, but what exactly is my body absorbing with my new plumbing? My nutritionist seems to think as long as my poop is normal, my absorption must be good. For now, I hope she’s right. Eventually when I go back, I’m sure we’ll check my levels again.

Food eating is going well at my desk job. We make fun of how often I eat, and I could keep making stomachless jokes all day. Glad it’s easy to take bites while sitting in front of a computer. The last few days, if my myfitnesspal app and I are calculating stuff right, I’ve been able to consume over 2000 calories. Score one for team Marne! Hopefully 113 is my bottom.

Yesterday, I got the question from a coworker, “where have you been the last 8 weeks?”. It was caveated with a nice “you don’t have to say if you don’t want to.” But of course, I’m blogging on the Internet, so I’m obviously pretty open about this whole thing. I see this as my opportunity to educate people about gastric cancer. When I told them I had a genetic predisposition to an undetectable stomach cancer with average age of onset in your 30s, had my stomach removed and beat stage I cancer, I got the ‘jaw dropped’ response. A look like, that’s crazy. Crazy for two reasons. 1. Didn’t know you could live without a stomach. And 2. I’m still pretty young and look healthy, albeit skinny. People just don’t expect to hear it. It’s never a short conversation. But I told them a lot of information about the whole ordeal, and they thought I was pretty peppy and positive about the whole thing. Having worried about this surgery for 6 months prior, I’m probably less stressed now. And knowing what to expect made the transition pretty good.

What I’ve also realized is that most people I’ve mentioned my saga to know somebody who’s fought and passed away from gastric cancer. Cancer sucks. I’m blessed to have beaten it. My dad must be watching over me with God.

Been thinking when I run my half marathon, maybe I can share my story. Also thinking of bringing awareness to nostomachforcancer by running with some signage that I’m running stomachless. Might make some more folks google and learn about stomach cancer.

9 Weeks Post-op

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I’m a little over 9 weeks post total prophylactic gastrectomy, and it’s been quite an interesting journey.

Eating
In the last few weeks, eating has really gone so much better. I feel like more and more of my food is staying down more frequently. There’s been a few bigger bites I’ve taken that previously might not have stayed down which now seem to. I’m focusing on my goal of 2000 calories a day, fighting everyday not to lose weight. I’ve been basically stable on my weight since removing my feeding tube, but it takes all I’ve got to continuously eat. I’m able to go to restaurants to eat and enjoy myself. Food is so intertwined with social events that eating lunch, aka snack number 4, with friends is comforting.

Weight
I started this journey having gained 6 lbs, bringing me to about 123. (I’m about 5′ 6″ with a small frame.) The lowest weight I can remember was 113 after I ran my first marathon. I was comfortable losing weight to this number. It’s slightly lower than I prefer, but I don’t look like a fragile twig about to break in the wind. Interestingly enough, pre-surgery my PA wasn’t concerned about me gaining weight. She always just said, “We want you to be healthy.” So, pre-surgery, I really kept up with my running and tried to eat mostly healthy. Was only able to gain the 6 lbs doing that. I’ve lost that 10 lbs to date and am at 113. I’m not comfortable running yet because I’ve got to figure out how to incorporate running without losing weight. I’m getting a big blubbery as my muscles have dwindled.

Food
The biggest foods I have issue with are sugars and high fat foods. Although, if I’ve had a meal with real, quality food that has protein, I can eat a cookie. I can have a half bowl of ice cream. I can have a mini butterfinger. I find I can do some sweets as long as I’ve had some quality foods beforehand. (I did eat a cookie one day & a doughnut another day, both uncoupled from protein and felt really cruddy for 10-20 minutes afterwards.)

My food volumes are going up. I ate half of a chopped brisket sandwich the other day, picking out the fatty pieces. As long as I chew, chew, chew, it’s ok.

I will say that eggs are really filling. I think of eggs as good protein and calories, but 2 eggs and one greek yogurt and I feel filled to the brim. This seems more so than other foods. My regular workday breakfast is 1/2 bagel with 1tbsp peanut butter and then 1 light & fit greek yogurt.

Feeling Crummy
For me, nausea or generally feeling bad only occurs for 10-20 minutes after eating something I shouldn’t have. If I drink water right before eating, it seems to be ok; water immediately following food seems to make me feel bad. Sugars without protein or something too fatty like a McDonald’s kids cheeseburger make me feel crummy.

Water
Hydration is tough. Since I can’t eat with my meals and I can’t chug my water like I used to, I have to focus on downing water. My current methodology that seems to help. Drink a giant water bottle starting immediately when I wake up. Keep focused taking sips as I get ready in the morning. Try to finish that water before leaving for work. I eat in the car en route, all so I can enjoy my coffee afterwards! Yum!

Getting enough water is probably the biggest habit change for me. I can’t just chug right before bed. I have to give myself 20-30 minutes to get the water down progressively before bed, rather than one giant chug right before laying down. It’s all about remembering to keep sipping.

Also since food makes me feel so full, it’s just tough to get water in while I’m focusing on calories. Food and water right now are two competing forces in my life, vying for that tiny new reservoir in my new plumbing.

How I Feel – No Longer the Sick Person
With my energy levels coming back, I mostly feel like my normal self. I can stop always thinking of myself as stomachless and take the focus back on ‘normal life’. I’m out swimming with my kiddos again and just jumping into playtime with them. The weeds in the yard were very happy while I was not 100%, but they have been battled as of this weekend. I have that extra energy to be out in the heat, pulling some weeds. And I’m back to my need to paint rooms in my house, currently my kitchen. Running has always been my stress relief and time to think, but painting and weeding are other outlets for me. (Yes, I’m weird. Plus I can eat/drink in between paint strokes.) The kitchen will get done with an hour here and there. (To my husband’s dismay at the length of time his kitchen will be incomplete and his feelings we should just hire a painter.)

I’m back at work with a normal routine again. I’m a little tired, but that’s ok. I’m running around with the family just doing life. And that was the goal of this whole thing. Beat cancer, enjoy life. The recovery period post-gastrectomy is but a bump in the winding road that is my life. I can’t help but think the cancer death sentence I had is now a fork in the road I have split off from. What are the possibilities for my newly lengthened life? Where will I go? I didn’t used to think I’d make it through my fifties with this genetic curse, but now I will. So I feel relief, the worst is behind me. And at that, the worst wasn’t that bad. Annoying, frustrating, discouraging me at times, but not that bad. Every meal might be a tiny battle for a little longer, but that’s ok. I don’t like to lose. I like to race, I like to win and I’m stubborn. Maybe these traits all helped.

All this being said, I will say as life gets back to normal and I focus less on me and my gastrectomy, it’ll be easy to lose weight. Will try to stay diligent.

 

Well, that’s all I have to share for now. At least, that’s all the things I think you might be interested in reading. (Yes, I ramble far too much and I know it!) I will try to post another food diary again because I think that’s most helpful to fellow gastrectomy patients. But then again, if you see my food diary, you might realize that I’m not as healthy as I aspire to be in my mind! ha!

Have a great day, it’s beautiful out there.

Too much negativity

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Some meals go perfectly fine. I probably “over blog” the bad meals hoping people reading this before/after surgery will glean an understanding of what challenges are to come or can relate to what they’re going through. (I’m not really sure who all my audience is for this blog.) It’s like product reviews on amazon, people who are upset are more likely to review than the person perfectly happy with his/her product.

Today, I had an entire serving of one of those Stouffer lasagnas with meat sauce, 1/3 cup of peas and 3 slices of canned peaches. I chewed like a champ, and everything went down well on the first try. Add a 1/4 glass of white wine, my first wine attempt. I’m more of a merlot gal, but white wine is what was available.

This meal will be called “epic success”. I felt like a person with normal plumbing tonight! Score one for team Marne!!

Near Miss

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I’m back at my desk job and one of corporate America’s working world buzz words is “near miss”, something you report as an almost accident so it won’t happen for real.

Today was a near miss for throwing up at work. Very suddenly getting that “I’m going to puke now” moment. My mouth starts watering, feels like a puke is impending…cue power walk to bathroom (takes at least 30-45 seconds from my desk), throw open stall door, spit in toilet, spit a few more times. All that haste to get to the bathroom and then the feeling passes.

I have to say, this has happened quite a few times where I really have the warning signs I will throw up, but I never do. And yay for food staying in and the feeling passing.

All that said, I ventured onto the full fat chicken salad sandwich today. Horrible… Loved the grapes. Picked out the celery because that just ain’t happenin. Mayo must just be too heavy. I managed to eat the whole sandwich, but lunch started at 11:30 with some chips and the sandwich wasn’t finished until 3:40. (I had a butterfinger mini and some water in the middle of the whole thing.) I will say chicken salad is just too heavy. It gets the official thumbs down.

That’s all for today! Have a good evening!

My Failed Dinner

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So I bothered to cook dinner tonight. Score one for me! Looked so yummy. Farafelle pasta in marinara sauce and a side of black beans.

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I apparently hadn’t learned my lesson with bowtie pasta. It’s amazingly hard to chew and all gets stuck. Cue food return number 110. Another meal fail. I’m going for a swim and will try the whole food thing again later. Bet it’ll go fine then.

Trial and error.

Try, try again. Then again, I’ve also heard the definition of crazy is doing the same thing over and over again, expecting a different outcome. I guess a total gastrectomy is crazy.