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