My weight, work and Genetics 101

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.

It’s Only a Flesh Wound and Other Random Thoughts Today

In two days, it will have been two weeks since my surgery. Knock on wood, but I actually feel really really good. After talking with other people who had gastrectomies and reading blogs, we had mentally prepared for me to be pretty laid up in bed this whole time. I’m not saying I’m up for a marathon right now, but with a lot of resting, I can take care of myself and partake in the kids’ bedtime routine. No nausea. Just officially the slowest eater ever. I get the vibe that sugars will be bad, but I’ve basically been able to eat small portions of all the yummy meals everyone has brought over. Far beyond our initial expectations. I’d like to say I must be a rock star, but I will credit improved medicine, the best surgeon, excellent pain management post-op through the epidural, my physical fitness level going in, and the power of half this community praying for me. I know I am in His hands and my healing must be going this well for a reason.

My random list of the night…
1. The j-tube, aka feeding tube, still creeps me out a little. It’s like an open flesh wound in the body. A random tube hanging out of my tummy. But, I’m also so glad to have it keeping my weight up right now, providing high protein, healing nutrition.
2. Added surgery bonus – my belly button never set back right after c-section 2. My gastrectomy somehow, someway fixed my belly button! Score one for me!
3. My abs can’t catch a break – been here before after baby 1, then baby 2 and now the mine field my tummy is right now. Alas, I know it’ll return, and this surgery was probably the easiest on my abs.
4. Cheez-its – I still love them. Glad that’s on my list of can-do foods!
5. Lazy feeling – take the kids to preschool and then take my nap. Makes me feel lazy. Got to keep reminding myself this is normal. (Yes, I have trouble slowing down.)
6. Can I still call it my tummy? – a tummy is a reference somewhat to your stomach. Is it a misnomer to refer to your midsection as your tummy after the surgery? Or is it ok because we also say babies grow in mommy’s tummies and that’s not entirely accurate either.
7. Did I pass this crappy gene onto my great kiddos? – Not sure, but I do trust that the medicine in 20 years will be far superior and my kids will say it’s insane I had my stomach removed to beat it “in my day”
8. Why is that blood thinner shot in my arm a bigger bruise than anything on my tummy? – so immediately following surgery, they shot blood thinner into my arm. Then the next day, they shot it into my gut. ( Far less bruising in the gut, but still a slight bruise at the injection site. Still painful.) So, one of the nurses made the mistake of telling me I have the right to refuse anything. After day 2 of blood thinners and fully aware post op there is a risk of blood clots, I refused the blood thinner shots.
9. My 4 year old likes to show everyone who brings over food mommy’s boo-boos. So, be fully prepared to see the mine field because he might make sure you see it.
10. Toddlers are funny – So when I “Kidify” my explanations to kids about what’s going on with mommy, a joke I made was that mommy’s drinking a baby bottle. The stuff going in the j-tube can best be described as formula. So the preschool teachers asked S how mommy was doing. Her response: “Haha! Mommy’s eating baby food.” Needless to say, the teachers were dying laughing. Of all the things we told the kids, that’s what she chose to repeat to her teachers.
11. Most people cook better than me – Tonight, we were treated to pork loin, mashed potatoes and the best green beans I’ve ever had. I might not be able to eat large portions, but everything is going down ok so far. Just some slight discomfort; I just try to heed to advice of others and chew really well.

Well, this is far too long. If you’ve read this far, wow! Have a good night.