During my second return to running, I was jogging on the treadmill during my lunch hour. (Did I mention I’m a crazy runner? Somewhere during all the months spent marathon training, answering the phone while running became ‘normal’ to me.) My brother called and I asked him if he’d heard the results back on his genetic testing. Turns out, he came back positive as well. On paper, the odds are 50/50 to inherit this CDH1 gene mutation. But at this point, every descendent of my grandmother has inherited the mutation. A few expletives might’ve left my mouth at some point about this situation.
Anger is where I head to initially. This is where running is my therapy, my coping mechanism, my outlet, my method for mentally reconciling my life and all the crazy stuff that goes on in this world. When I’m upset, I make myself run faster until the only thing I can think about is breathing. When I’m not mad, running lets me float away in my thoughts. So my second run post gastrectomy from a pure running perspective was good because I pushed pace quite well.
I was supposed to be the only one to go through this crazy surgery, not both of us. We were supposed to move on with life as a family now that my surgery is over. That’s how it should’ve been. We needed to be done with this whole ordeal for the next 20 years until I have to get my kids tested. But this gene is the gift that keeps on giving; it’s just a gift you don’t want. It reminds me of reading The Lottery. This gene mutation is now responsible for me losing my dad at 16, losing my aunt in my 20s, then my surgery,now my brother and later our kids.
But I remind myself, at least I have an option. At least I can test for the gene. My kids won’t lose their mommy when they’re 16. They’ll have me around for a long time. So, for as easy as it is to spiral down the anger tunnel, I will keep my head in a positive place.
So we’ll be there supporting my brother as he starts his journey through a total prophylactic gastrectomy as well. Apparently my family was never meant to be anything other than skinny minnies.
Have a good night. Keep your head in a positive place. Enjoy all the good this world has to offer.
I’m sorry Marne. 🙁 I wish your brother didn’t have to go through this as well.
You are going to be an inspiration for him and others with the way you are being a role model.
Hugs,
Jennifer
Hi Marne
I am 48 had a TG 7 years ago due to CDH1 mutation like you. I check back to this sight occasionally and came across your posts tonight. I relate to so much of what you’re saying!
When my new “normal” of life without a stomach–this strange existence that I now have–gets me down, I think about my Mom who died so sadly at 33 and left 3 little kids (me, my sister, and my brother) and realize she would have given anything to have known about CDH1 and to have a TG. I’ve got my life!!!!!! She had the 1970s, no genetic testing, and a 2 year battle with a horrible disease. Our family motto is, “it could be worse!”
Sounds like you’re doing great. Keep it up. It does get easier!