Monday, August 3, 2020

Happy CDH-1 Quinquennial!

It is call a Quinquennial...
According to Merriam-Webster dictionary quinquennial means "Consisting of, or lasting five years".

That being the case, my life as a member of the Seahorse Club has today hit its quinquennial. 
Key the balloons, drop the confetti and send in the clowns.

It was five years ago today that my wife and I were at the Mayo Clinic so that Dr. Kendrick could perform the surgery that would remove my stomach due to a positive diagnoses of a genetic mutation in one of my CDH-1 genes.

Five years without a stomach. 1,825 days have past since that day down in Rochester Minnesota. So much has changed, so much has happened during this quinquennial.
When I think back on that day, I went into that day being nervous, scared and worried. 
I was nervous about the surgery. I mean it was a major surgery and anything could go wrong.
I was scared that they would find cancer once my stomach was removed and worried about the quality of life I would have after the surgery. 
There were some many unanswered questions as I was wheeled in to the operating room.
So many doubts and fears as I awoke in the recovery room.
How was my life about to change?

They say change happens and it does.
And when I look back, so little of it had anything to do with my CDH-1 mutation, the surgery that happened that day or not having a stomach. In fact, unless I do something stupid like drink too much, eat to fast or not chew well enough, I don't even realize that my stomach is missing.
Still I changed...

There were life event changes, The ones from me that stand out the most are;
Our kids are grown and moved on. Most days the house seems empty. This gets amplified due to the fact that due to this crazy pandemic I have been furloughed since April 12th. So I am stuck alone for a good portion of the day.
I have found respite in daily walks. Just getting out of the house, taking that long walk to see what is going on in our little corner of the world, but when I return the house is usually still empty.

There was also that unfortunate day when I decided to ride my moped and it cost me the use of my right eye. So I have embraced the life of a pirate. In fact the other night at the River Inn we told the story to a young fan on how we maneuvered the pirate ship down the Crow River to Hanover and it was moored just around the bend. Sometimes you just got to have a little fun.
These are just things that happen to us. Both good and bad. We just keep rolling with them. 

Still there have been life changing events as well.
The loss of my mother to Alzheimers is one. Now I know that everyone must die at some point in time. Our days on this earth are numbered and the countdown started the day we were born. But to see my mom go from receiving her Master's degree in literature, to the state that this affliction took here to in such a short amount of time still haunts me. Is that my fate? Is that how my time on this earth will end? I really hope not.

More importantly though is the complete other end of the spectrum. 
During these past five years I have become a Grandpa. Not once but twice. What an amazing gift. 
Now I count my marriage to my wife and the birth of our children and the most significant events I have ever experience. But these two little boys give me a whole new meaning on what life should be, needs to be. Becoming "Papa" to these guys adds a whole new meaning to life's defining moments, and is one of the best things that has ever happened to me.
These are the events that did more to help change and shape me into who I am and who I will become.

Changes 
Those were just a few events from my past five years. All were important, and the most important of them have nothing to do with my genetic mutation or the quinquennial that arrived today. I am not the same man that I was before the surgery. The CDH-1 mutation may have started the change, but it did not control the narrative that created the man I am today.

From my view these changes provide a perspective on not only how fast five years can fly by, but just how much can happen in that time. So if you find yourself in a time of change or things are not going your way right now, don't quit. Odds are, things will work out just fine. Probably not the way you expected them to, but it will still turn out OK. You will grow, you will learn new things about yourself and you will change. 
That's OK.
Trust me, a lot can happen in five years. 

For all the brave and the souls who went before us
Stand tall, then proudly lift your voices
Let 'em know who we are and our choices
And one day we won't have to sing this chorus
(Change   Christina Aguilera)

Monday, February 24, 2020

5 Years After... Surgery Week

This is a copy of a blog I recently wrote on another site.
I decided to copy it to this page as well. I want it to serve as a reminder that life still happens and the support of my family is what carried me through.

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Do you know that February marks five years as being a mutant.
Five years ago I learned that I was a CDH1 genetic mutation carrier. Five years ago I started a journey that would lead to a major surgery that would alter the way I lead my life. That was five years ago, and you know the saying, the more things change the more things remain the same..
This week we count down the final few days before another major surgery.

Except....
This time the surgery is not for me.
On Friday my wife Edie will be having a total hysterectomy at the University of Minnesota.

We knew that this procedure was on the horizon.
We have been slowly walking this path for the past few years. She has been battling with precancerous cells and fibroid's for a while now. She had a procedure to remove some cancerous cells three of four years ago.
There have been check ups that have ended up resulting in biopsies needing to be done, heck there was just one a month or so ago. There is just no reason to risk this anymore. We have spent that last five years focusing on me and now it time to make sure that she stays safe.

So the surgery is set for Friday.
It is a major surgery and she will be out of work for six weeks or so.
She has a follow up with the surgeon on the 10th of March and shortly there after I am going to run her out to North Carolina to spend time with Jen, Sam and the boys.
The concern is that she needs to take it easy and heal.
If she stays here the temptation will be there to do something around the house that could cause a problem.
She sometimes has a tendency to do that!
Please keep Edie in your thoughts and prayers on Friday.

When we are together the moments I cherish
With every beat of my heart
To touch you, to hold you
To feel you, to need you 
There's nothing to keep us apart
(Three Times A Lady  The Commodores)