Cody Updates by Mom

Hi there.  Here is a basic picture of what they do each time they perform a dilation procedure on me.  They will typically use up to 3-4 balloons in increasingly bigger sizes to help stretch the stricture.

I basically can make it about a week and a half before I feel the change in my esophagus size.  I know that I have joked about Jim calling the dilation procedure the “roto rooter” process however it is a good way to imagine what is happening.  If you think about a drain pipe and it starting to get clogged you do not really notice it until the water is backing up a bit.  However, the clog has been going on for quite some time.  I have started to learn the subtleties of the change before it starts backing up.  This is great from a standpoint of being able to stay on top of it but it kind of sucks because I really want to ignore the signs and have a habit of second guessing my instincts.  On this topic, I have been right.  Every time I think I am starting to have an issue, I end up being sure within a day or so.

So, today I called Michelle again and I have my next dilation scheduled for Thursday.  Another day down at Mayo and another trip to lala land while they send the balloon down to expand that area.  Unfortunately, I am starting to recognize people that work in the GI second floor of the Mayo Clinic.  The really sad part is they are starting to recognize me too.  That means that I have been there way to much!

I have promised to try to be as honest as I can on here to give you a picture of the process in whole.  So, honestly…I am getting very tired of dilations.  I am getting very frustrated that I cannot eat what I want.  I haven’t had a steak since before surgery and I miss it.  Sandwiches are basically out and I miss them.  Fish is getting boring and my “want” to be creative with my food is waning.  I haven’t been able to gain any of those eight pounds that I lost during my “stint with the stent” back and have really just accepted that this is my new weight.  They seem to be satisfied with the fact that I have stabilized at that weight and are not pushing to have me put more on since I am not continuing to lose.

What I am doing?  I am constantly telling myself that I need to be patient.  I don’t always listen and I have a tendency to disagree with myself quite a bit but I try.  I need to let my process work.  They are doing plan “mel” and I need to stick to my guns.  Nothing happens overnight, or overmonths if I can create my own word.  I have moved to a formula of basically eating when and what I feel like.  I want and crave everything I cannot have so I basically eat what I can and don’t really worry about nutrition right now.  If it will pass through, I’m good.  Chicken is kind of my thermometer with my eating.  It is typically easy to chew and doesn’t stick together so it is a good option for me in general.  When I start having an issue with chicken then I know I have a problem.  Tonight the chicken that got stuck finally went through however it hurt like hell getting there.  I actually had to leave the dinner table and just let it pass in private.  Again, I tell myself to have patience, unfortunately, I am starting to have selective hearing to myself.

On the bright side, my care team continues to go with plan Mel and I am happy to be able to easily get in for my dilations and there is no talk of random procedures or hospital stays.  That is very good as I am starting to have an aversion to random things.  It is now June and warmer weather is on the docket!  I am very excited for this as I have turned into a freeze baby with temperatures.  Gig and camper season is here and we actually get to take some days off that are not around going to the doctor.  I am looking forward to some days in the camper away from all of this.  Yay!!

Caring Bridge Comments

Love and prayers..from mom|Jun 3, 2015 8:41am
It sounds like plan Mel is working out fairly well at this time. Hang in there and know that we are still praying for all to become normal. even if it is the new normal. I love you and am glad to hear that you are taking the time for camping and just being YOU. God Bless you