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.

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.

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.

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)

Monday, August 5, 2019

Four Years And Counting

Four years.
Four years ago today I had my stomach removed. That equates to 1,460 days that I have lived without a stomach.

That is four years that I can look back on and be proud that I made it through it. Surprised I made it though but proud non the less.

Four years that family and friends have been here to help pick me up, dust me off, and remind me that "you got this".

Four years of eating at your favorite restaurant and asking for a take home container as soon as your meal arrives so you can portion out what you are going to take home.

Four years of not eating this or not eating that. Four years of getting food stuck. Four years of not feeling hungry or not feeling full.
Four Years...

You know I still miss it. My stomach that is. There are days when you are watching someone eat or drink something that you know you can't. Well "can't" is kind of the wrong word here. You can eat or drink it. Nothing stopping you. You just know from experience that you shouldn't have it or your stomach-less body will remind you that it wasn't your best decision of the day. I have done that a couple of times I think.

When I first started on this journey there I posted my blog on social media. It was the only way I had to communicate how I was doing. Through this though I was able to connect to a small group of people who are having to walk down their own stomach-less journey. We refer to this group as seahorses, due to the fact that seahorses do not have stomachs.
We (Seahorses) are a small community, but it seems to be growing larger everyday. There will be a post online that someone, somewhere has been diagnosed with this mutation. The community then rallies behind them and lets them know that they are not alone. We use the phrase "You Got This!" a lot.

I kind of wandered all over the place with this blog, but I wanted to stop for a second and recognize the day. It has been four years now. Four years of excitement, adventures, fun and surprises. Maybe not what you thought I would write, but the last four years were just that.

May good fortune be with you
May your guiding light be strong
Build a stairway to heaven
With a prince or a vagabond
(Forever Young   Rod Stewart)

Monday, June 3, 2019

Seahorses Running Wild In The Wiindy City

I'm Back....,
I know I said I was going to move on from this blog but then this weekend happened.

Saturday I got to be a part of this amazing event in Chicago Illinois put on by the No Stomach For Cancer Organization called Spotlight On Stomach Cancer.
So I drove to Chicago on Friday and spent the night outside the city visiting a local brewery(because I like beer) and then Saturday morning Uber'd my way to the event. The event was being held at the University of Chicago Medicine Center for Care & Discovery.
Now to be honest, I didn't know what to expect. I have been to conferences, symposiums. and seminars before but they were almost always as part of my professional life, never my personal life. I was worried that I was going to be told that I needed to do this or I needed do that. To many conferences end with here "buy my book" or "congratulations you now own a timeshare". So I didn't know what to expect but I knew that I needed to go. I can't tell you why I thought it was so important that I attend, I just knew that it was.

I am so glad I went, what an amazing event!
There was so much information and support. The No Stomach For Cancer organization was there with information. Doctors from the University of Chicago medical team and a surgeon from the National Institute of Health out of Maryland were there to talk and answer questions. They talked about strategies, technology and advancements that will make the surgery safer and easier to recover from.They talked about the procedure and how they biopsied to look for cancer cells.
There was time and the opportunity to meet folks from all over. People like me, who had to made the decision to fight back against cancer by having there stomachs removed. I met people who were just starting their journey and were hungry for information and support to let them know that they would be OK.

Then later in the evening things got real.
After the event they host what they call "A Night of Healing". This not only included the families with the CDH1 mutation attending the conference. It also included the Medical Professionals, and the staff from the No Stomach for Cancer Organization.

We moved from the hall to a smaller more intimate lounge for some food and beverages. There were nice places to sit, to get to know one another and talk. We talked in small groups as we moved randomly around the room. We talked as a large group on a wide range of topics. No question was off limit. We talked and talked. There was laughter, there were tears, but most importantly there was support.
Just an amazing night.

We call ourselves "seahorses' because seahorses have no stomachs. There is not a lot of us. Still our numbers are growing. I could of said that regrettably the numbers our are growing, but that's not really the case. This conference was about knowledge and this knowledge is giving us the chance to fight back. To take back the control. Becoming a seahorse is just one was to say "F.U." to stomach cancer.
So Thank you to the No Stomach for Cancer organization. Thank you to the University of Chicago Medicine Center for Care & Discovery for hosting it and all the professionals who gave of their time. Thank you to Dr. Jeremy Davis from The National Institute of Health for coming out to talk to us.

And if there was one thing I could say that I took away from the conference, it is that we not in this fight alone. Our numbers maybe small, but there are a lot of folks fighting for us. We are not alone.

Forget what we're told before we get too old
Show me a garden that's bursting into life
All that I am All that I ever was
Is here in your perfect eyes, they're all I can see
(Chasing Cars  Snow Patrol)

Tuesday, March 26, 2019

Just Seems Like A Good Time.

When I started writing this blog it was with the intent of using it to update family and friends on my journey with the CDH1 mutation. I also wanted to leave it as resource that anyone could use if they found themselves in the same position. So it told my story with this specific genetic mutation and my journey to becoming stomachless.
Well then life happened and I slammed my face into a sign at 28 miles per hour. Now I had something else to write about. Different experience, but still partly the same as far as updating friends and family about how I was doing. So I added that update to this blog.

Now it is time for me to move on as much as I can.
So this will be my last regular update to this blog. I might update it on the anniversaries of both events just to let you all know how I am doing, however as much as I can I want to close this chapter of my life. Somethings will never change. I will never again have a stomach so that issue will always hang around. And unless they find a way to correct my double vision, I will continue to live seeing life out of only one eye. I can't change it so I need to move past it.

So I want to take a few minutes to say Thank You.
When I started writing this the thought of doing it scared the hell out of me. I never considered myself a good writer or a good story teller, yet I needed an outlet to talk about how I was doing. I also wanted to capture the experience in case one of my kids were forced down this path. So I wrote. Sometimes a lot. I used "loose" instead of "lose" and "your" instead of "you're" yet you all stuck around and continued to read my story.

Still I never expected it to turn into what it has or connect me with so many people. I have reconnected with old friends I had lost track of, classmates and past coworkers. Which has been so amazing!
I also want to thank the No Stomach for Cancer organization for publishing this blog and getting it out worldwide. This blog has been read in over 70 countries by close to 100,000 people, many of whom took the time to send me notes of support. These are people I have never met or will never meet.

And just to be clear, I fully believe that I lived through both of these medical misadventures because of your support. That is why I wanted to write and just say thank you.

Am I going to quit writing? No. I am just going to switch to another blog and there let me write about things that are important to me that have nothing to do with this topic. I want to make sure that this one only dealt with this period of my life and the next blog writes about other stuff. That blog I won't do because I need to keep people informed. I will just do it because I get to.

One last thing. I have been asked a number of times why I try to end my blogs with a music quote. So I thought I would answer that. Music has always been a part of my life. It has celebrated with me, cried with me and carried me through some of the darkest moments of my life. When things would get tough during this period I would turn some music to help me relax and stay grounded.
So I thought I would share some. I hope you enjoyed them.

Thank you,

Oz never did give nothing to the Tin Man
That he didn't, didn't already have
And Cause never was the reason for the evening
Or the tropic of Sir Galahad
So please, Believe in me
(Tin Man   America)

Wednesday, February 13, 2019

Dear Younger Me...

This past Saturday marked an anniversary of sorts.
It was February 9th 2015 when I received the news that I carried the mutated CDH1 gene. Four years have come and gone since then and a lot has happened. So I started wondering what all would have happened if I hadn’t had the testing done. What if I hadn't had the surgery. What would happen if I could go back in time and tell myself what all was coming my way over the next few years.
What if I could go back?
What would I say?
Would I change anything?

Complicated questions…
I could talk about the positive aspects of my decision. There was no cancer found. There is no chance that the cancer, HDGC, will ever rear it's ugly head. I am also healthier then I was before the surgery.
I could go on and on about the less positive aspects, like strictures and the stent. How the stent was painful and had to be removed, but still in the end it did its job.
Not related to the surgery, I could talk about the job loss that followed and work out a plan to do a better job managing through that.
Would I let slip the amazing news that the title of Grandpa was coming its way soon? Would I mention the news about a second one due in May?
Would I list off all of the family and friends that were about to enter or reenter his life? Or the people who are going to be stopping by just to check in to see how things were going?
I would definitely make sure that there was NO MOPED RIDE during the 2017 Hanover Harvest Festival. Keep that scooter in the garage!

So what if I did all of this?
What if I had the chance to go back and tell myself all of this?
Would it change anything? Would I want it to?
Honestly, I hope not.
Since that day I have experienced all the emotional ups and downs that come with having to make the decision on whether or not I was going to have them remove my stomach. I have had to live with the second guessing and the what if’s after I made that decision.
Still would I change anything? I believe that it was the challenges and the stress of going through that time that has helped make this latest situation more bearable, or less shitty if you pardon my language.

You see life still happens. Through this all, life has presented me with one surprise after another. Some were unwelcomed and ill-timed. Still so many were good surprises, some were down right amazing.
So on this anniversary of sorts, I just want to reflect on this part of the journey and acknowledge that even with all my current challenges that life still happens.
So if I did go back I imagine that I would probably just share a beer with myself. Tell myself something along the lines of "you're doing fine", but "buckle up buttercup".
There is still more life yet to be lived.

Every mountain every valley
Thru each heartache you will see
Every moment brings you closer
To who you were meant to be
Dear younger me
(Dear Younger Me   MercyMe)

Saturday, January 26, 2019

Squeezing Juice... A Medical Update

No matter what decision you need to make, you make that decision based on a perceived expected outcome. At work we use the phrase "is the juice worth the squeeze?". Are you getting enough out of what you are doing to make doing it worth while.

So that brings us to my last trip to the Mayo Clinic.
We hadn't been sitting in the room with the doctors very long when the conversation surprisingly turned to scheduling another surgery.

Time out!
I stopped everyone.
"The last time I was sitting in this chair you all said that was nothing more that you could do to fix me."
To which Dr. Holmes responded, "And that has not changed we can not fix you. The surgery we are talking about would be done in an effort to give you a limited field of single vision."
"Define limited field of vision and when I would have it?" I asked.
"When your head was stationary. For instance when you are having a conversation one person or sitting watching television." was Dr. Holmes's response.
"And the rest of the time I would have double vision and need glasses or my patch.
"correct" he responded.
"So let's say the person I am talking to moves their head, or the image on the TV screen suddenly moves. Would my vision switch back from single vision to double vision and then back to single vision?"
He replied "most likely, and over time your mind might be able to compensate for the movement and you wouldn't notice it. However it will take you some time to get used to it."

He continued to go on talking about the fact that he felt that it would work this time because they were going to be "more aggressive" with the surgery and "over correct" the placement of the eye to compensate for movement of the eye location when it starts to heal.
Huh... The only thing I really heard was "More aggressive."
The last time we did this surgery it hurt like hell for a couple of weeks and now he wants to be "more aggressive" for just some minor improvements.

Was the juice worth the squeeze?
Yea, I don't think so.
So I politely backed out.
There will be no more surgeries unless it is to save the eye, or technology improves to where they can fix me. I need to be done for a while. I just don't have any more surgeries left in me at this time.
We agreed to touch base every six months or so just to see if any improvements in technology have surfaced. Sooner if something changes with my eye. However my next trip to Mayo will happen in June sometime.
So now I will close the chapter of this book and see what new adventures await me in the one eyed land of land of fairies and elves.

I am what I am
And what I am needs no excuses
I deal my own deck
Sometimes the ace, sometimes the deuces
It's one life and there's no return and no deposit
One life so it's time to open up your closet
Life's not worth a damn till you can shout out
"I am what I am"
(I am what I am   Gloria Gaynor)