Cody Updates by Mom

Crying.  Why do we cry?  We can cry when we are happy, proud, sad, angry, scared, over spilled milk and even for no reason at all.  Some think that crying is a sign of weakness, some think it is a sign of great strength and some say it is a result of being strong for too long.  I don’t know any of the answers but I know this, last night I cried, really cried.  It had been there on the edge for the last few days.  I would get a note from a teacher of Cody’s saying how wonderful of a son I have and I would tear up.  I would see a sad scene on a show and tear up.  I would stare at my pureed “whatever” and force the tears back down and stop the pity party from starting.  You see, I am expected to be strong, tough as nails, fight to the last.  I cannot let these stupid tears take over.  At least that is what I was telling myself.

So, last night I cried, not for myself, not because of my situation, not because of a show but because of my heart breaking when my brother Roger told me he had tested positive for the CDH1 gene mutation.  My personal prayer was that no one that I love and care about would ever have to deal with this.  So much for that.  The tears, in and of themselves were cleansing.  They washed away the petty pity party thinking and have given me additional strength.  I do not think crying is a sign of weakness but if you let the tears do their job they can help you heal.

So, now what.  You may think that this is a slam-dunk easy situation for my brother.  It is not.  His path is different.  He will need to figure out his own risks and health situation before making any drastic decisions.  If you remember, CDH1 causes two main cancers.  Gastric and breast.  The gastric at up to an 80% chance and the breast up to a 60% chance.  In my journey I had already lost on the odds of breast cancer.  This gene mutation had already shown that it was going to cause cancer in my body.  That truth was a big part of my decision.  My doctors even said I could wait for surgery for 5-10 years as long as I had the stomach scope done regularly and that I understood if they found something that they may not be able to cure it.  I knew my body strength right now, who knows what my health would be in 5-10 years and who knows if my body would be able to adjust as easily as now.  Each of these factors brought me to my decision.  My brother will have to figure out his.

I know that some of my brothers friends read this site so I want to say a few things about what you can do.  Prayers and support.  In the end whatever decisions Roger makes will be the right decisions for him.  Do no assume that he will need to follow my path because of the similar situation.  Your love and support will help him more than you will ever know.  Listen, if he needs to talk.  All of this can be very heavy to bear on your own.  Talking can help take away the power of the situation and give it back to the person talking.  My brother is very strong already.  Hey, he made it through brain surgery without any issues and he seems about as normal as he was before.  (*wink, wink*)  Help him laugh.  Laughing at the absurdity of the situation can sometimes be the only thing to keep you sane.

So, what does this mean for me.  Well, one question has been answered.  I was not some anomaly that had an issue at conception that cause this gene mutation.  There was always hope.  One (or both) of our parents have passed the CDH1 mutation down to some of us kids.  It’s like a not fun version of BINGO.  Other than that, my path is to heal.

How am I doing?  Well, pretty good.  I have been eating more of the soft foods (mac & cheese, fruit, eggs) and it is going well as long as I am diligent with chewing and small bites.  I had a piece of potato get stuck yesterday and that wasn’t fun.  I ended up throwing it up but hey, not bad since that is the real first issue I have had.  My weight is still at 15 pounds down.  I imagine that will change as I keep healing and getting around more.

I thank you again for your continued support and prayers.  I ask that, if you wouldn’t mind, add one more name to those prayer lists.  Roger Engnell.  He’s gonna need them too.

Caring Bridge Comments

Janet|Feb 11, 2015 11:52am
Roger Engel it is.