Today, while working, I had the bright idea to google CDH1. That was a very bad idea. I found a website called nostomachforcancer.org which seemed legit, so I started reading. I immediately broke down, started crying and felt hopeless. I read CDH1 gives you a very high chance of producing HDGC, hereditary diffuse gastric (stomach) cancer, and that the recommendation is to have your stomach removed. What?!? How do you live without a f*cking stomach?! What kind of life am I going to have?!? This was a rough work day.
I called my best friend on the way home, who is also a medical professional, and she had never really heard of this either. She tried to calm me down, told me to take it one step at a time and everything was going to be okay. But she didn’t understand. She didn’t read what I read.
When I got home I told Matt, my husband, what I had read. He could tell I was all worked up, anxious and worried. He made me promise I would not do any more research online until we meet with the genetic counselor and told me to calm down, take a breath and that we would figure this out. I’m really hoping the genetic counselor with have more promising information and know something I don’t know at this point. I’m feeling so angry I ever even got tested for a genetic mutation to begin with. The whole reason I did was because of my family history of breast cancer on my mom’s side and now this. Ugh. And why would I ever want to have to make the decision to remove my stomach?!?
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