Cody Updates by Mom

I have been back at work both yesterday and today after my dilation procedure on Tuesday and I am still doing well.  Eating is going really good and I was able to actually have dinner with Jim tonight instead of eating pureed.  It was a simple meal of fried SPAM, noodles and cheese sauce.  Putting food on a plate for myself that is still in the form that it was cooked is a really cool thing.  I am still being very careful at work, just in case, but I am happy to be able to chew my food at home.  With all of the eating issues I have had over the last couple weeks I am down another three pounds.  This puts me at 27 total in the last eight weeks.  I am noticing that I am not drinking as much as I should be during the day though.  I am going to be working on an plan to ensure that I am getting those liquids when I am busy.  I cannot drink just water as I need other nutrients so I will be making sure I have juice with me more often.

I have been more tired this week.  I know, its not been an easy week but this is a bit more.  I think that my body, physically, is finally to the point of saying, “dude, I need a break, like, a real one.”  Sleep is hard to come by as I am having to resort to my recliner for sleep with the healing from the surgery.  I am so happy we have it in the bedroom but it is not a memory foam recliner so not quite as comfy as my bed.  The tiredness will pass but I know it has been noticeable to others.  I am still able to run through the show at our practices with all the dancing and singing so I know it isn’t even close to my breaking point.

I am headed back to Mayo on April 10th for the next dilation procedure.  This is the big one with anesthesia.  Then a follow up with Michelle and Sheila on the 13th.  Onward and upward!

Results.  The good.  Monday I got a fantastic call!  My brother Doug called and his test came back negative for the CDH1 gene.  Yay!!!!  Literally I was saying it over and over again on the phone.  I cannot express enough how much I want the rest of my siblings, my son and Roger’s kids to all be negative.  We can handle this without having a gaggle of people experiencing it with us.  Well, unfortunately that didn’t happen.

Results, answers, questions.  The not so good.  Today we learned what side of the family that the gene is being passed down on.  It is with a plethora of mixed emotions that I tell you that my mom has tested positive for the CDH1 gene.  The genetic counselor has confirmed that this has been passed down from my mom’s father’s side.  The original information that my sister Teri was able to provide on my mother’s family showed a clear path up to my great, great grandmother that passed away at 51 of stomach cancer.  You are probably wondering, now what?  Actually, so are we.  We now have the answer of where it came from.  Is there a slight chance that my dad had it too, yeah but it would be really small and how did they end up with seven of us.  (side note – two bad genes passed down to a fetus is immediately fatal)  In talking with my mom we have discussed for her to see Sheila, my NP at Mayo that helped me get all necessary testing and information to make an informed decision.  Then my mom will have to determine what her journey will look like.  It too will be very different.  It will be based on her circumstances, test results from a scope and other tests and current health and all that. Her journey has just started.

More writing.  As you have figured out, I love to write.  Actually it has been my dream from childhood to be a writer.  I am happy to say that my brother is writing his story.  You can find it at the following link if you want to read his journey.  http://rogerengnell.blogspot.com/  He is doing something that is cool in his blog.  He is putting in song lyrics that make sense for his current location on the journey.  I want to copy him just this once because it reminded me of a song that always seems to pop in my head when I think of my journey.  (imitation is the best flattery, right?)

No I’ll stand my ground
Won’t be turned around
And I’ll keep this world from draggin’ me down
Gonna stand my ground

Caring Bridge Comments

Victoria Dahlin|Mar 27, 2015 11:45am
You are inspiring. Prayers for you.