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)

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.

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)

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)

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)

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,

Roger

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)

Dear Younger Me...

This past Saturday marked an anniversary of sorts.
It was February 9^th 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)

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)

A Guy Walks Into A Bar. Part Two

First off, Happy New Year!
A few weeks ago North Carolina got slammed with over a foot of snow. My daughter bundled up our two year old Grandson and took him out to experience it. He took one look at it shook his head, said "Nope. Up". He wanted no part of it. In the end he was just fine. It was that initial shock that he needed help getting through.

So I had been in a similar spot after being told that the Mayo Clinic did not have the technology to fix my double vision. This was from the doctor who was supposed to be the miracle man, my last chance to getting my vision fixed. Afterwards, I Just kind of went numb and started going through the motions of daily living.

I didn't know how much of a funk I was in until one particular Sunday when things changed and the feeling lifted.

It all started when I walked into a bar.

This bar was the River Inn in Hanover. They know me and I know them. They know that my wife and I like to sit bar side and for the most part what our drink selection will be.

This particular Sunday we walked into the River Inn and bunch of people looked my way and yelled "SUPRISE!"
I stood there for a second confused. There was no one behind me so who were these people and why were they trying to "Surprise" me? It's was not my birthday or anything.


Then I recognized one and thought "Laurie? Why would she be here?" Then one by one I started recognizing the group of folks who were there. These were all high school classmates that I hadn't seen in years.
OK, so there is the periodic Facebook stalk, but still I haven't seen these folks in years.
Still here they were. In Hanover. At the River Inn. Too see me.
How they put in all together and pulled it off I will never know, but they did!
We talked, and laughed for a couple of hours. We could have carried on all day if time had permitted.
So like Remi with the snow in North Carolina, I just needed a "pick me up".
This was the pick up I needed and it came at the perfect time.


So to that crazy group of friends that made the trek to the River Inn just to see me and all the holiday greetings I received over the following days.
It was amazing and I still think about and smile.


Thank you, Thank you, I needed that!


If there's still a chance then take my hand
And we'll steal away
Off into the night 'til we make things right
The sun's gonna rise on a better day
(Come a little Closer  Dierks Bently)

Mudville

There is a famous poem written by Ernest Lawrence Thayer called “Casey at the Bat”. It is a poem about baseball and how the hopes of one team rested on the shoulders of one man, the mighty Casey.

Here is the last paragraph of that poem:

“Oh, somewhere in the favored land the sun is shining bright, the band is playing somewhere, and somewhere hearts are light;

And somewhere men are laughing, and somewhere children shout, but there is no joy in Mudville – mighty Casey has struck out.”

Well, my Mudville was at the Mayo Clinic and my mighty Casey was my Surgeon Dr. Holmes. A surgeon who specializes in double vision and who has been known to be able to pull off miracles. My hopes for single vision rested with him.
However yesterday he informed me of the following:

“We can’t fix your eye. The technology necessary to do it does not exist at this time.”

And with that statement my quest to be able to use my right eye once again ended with a thud.


In the end there was just too much damage done to the eye socket. In most cases double vision is either horizontal, vertical or a little of both. With surgery and/or corrective lenses they have an excellent chance of getting you back to single vision.

In my situation not only do I have both the horizontal and vertical issue, my eye is not sitting level. Due to this the image I see leans to the right and the degree that it leans to the right makes correcting it, at this time, improbable at best. Then there is an issue with scar tissue that has formed behind my eye. It is restricting my eye movement. This is where the missing technology comes into play. Today, they have no way of fixing this issue. They have tried to cut away the scar tissue with each surgery, but it always returns. It keeps my eye from moving naturally when I move my head up or down or side to side.
So what's next?

I will continue to do my physical therapy through the end of the year. After the first of the year we head back down to Mayo to see if my double vision has improved. We are not holding out hope for this, but they want to look at it one more time before moving forward.

Once they have ruled out any future procedures, then they are going to fit me for a special set of glasses. These will have a lens in the right eye that people will be able to see through when looking at me, but I will not be able to see out of. I will then rotate between the glasses and an eye patch depending on what I am doing or how I am feeling.
My life with monocular vision will officially start then.


How am I doing with all of this you may wonder? I am numb. I am disappointed. I am angry. This is not how I wanted this medical misadventure to end. Yes, I have always know that there was a really good chance that I would never regain the use of my right eye. It is just that I have had so many surgeries on this eye that I always expected that someway, somehow, I would get back to single vision.

Now that’s not gonna happen.
The mighty Casey has struck out.


Don't your feet get cold in the wintertime
The sky won't snow and the sun won't shine
It's hard to tell the night time from the day
You're losin' all your highs and lows
Ain't it funny how the feelin' goes away..
(Desperado  The Eagles)

It All Started With "This Is Not Good"

The Mayo Clinic.
One of the finest medical facilities in the world.
It has treated Kings, Presidents and celebrities galore. It is known around the world as the place to go when you truly need to get something fixed. It is a well oil machine that runs like clockwork and the staff is committed to turning the impossible into everyday occurrences.
So what happens when the wheels come off?
What happens when they everyday goes south?
At what point do you start to get worried.
At what point does the Mayo Clinic start to get worried?
Well...
It wasn't so much the phrase that was issued "This is not good".
It wasn't so much that that particular phrase was said four different times over two different visits.
It wasn't even that it was said by four of the top optical surgeons the Mayo Clinic has to offer.
It was the phrase that followed that sent everything into a tailspin personally and the Mayo Clinic medically.
That phrase was:
"He's not going to make it until then".
It was said at least six times during this period, but I have become numb to the phrase and don't know what to think and am just going with the flow.
First off, let me say that my life is not in jeopardy. It is not or has ever been in jeopardy with the care that I have received and I continue to receive at Mayo.
The issue is that I am once again at risk of losing my right eye,

So what is happening?
For a year or so now I have known that my right side lower eye lid has been rolling in. I have had more than a few surgeries to try to fix it. No matter how many times we have rolled the eyelid out, it rolls itself back in. This all has to do with the fact that my eyeball is not in the same place; it is lower and set back from where it was originally. This causes a gap between the lid and the surface of the eye which allows the eyelid to roll in. The plan was we would fix this once all the other surgeries were done.
Now on the outside of your eye is a outer lens of some sort that protects the main area of your eye.
My rolled in eyelid and eyelashes are rubbing against that lens and wearing it away. In my case it is on the very lower section of the white section of my right eye, If that area opens up, or that lens gets worn away, well then it is game over for the eye. I lose my right eye.
That is where I am at.
So I have run out of time. The outer lens has gotten so thin that they do not believe that it will last until my scheduled surgery on November 14th.

What do we do?
Emergency surgery will be performed on the eye tomorrow at 1PM the Mayo Clinic. They have pulled together a team of surgeons that they feel can pull this off. The goal will be to reconstruct the eyelid by taking tissue from the inside of my mouth to re-build the eyelid. Once done it should protect the lens, but I need to get to that point.

That is what tomorrow is all about.
I just wanted to let folks know...
Talk to you on the flip side.
Roger

Does anybody really know what time it is (I don't)
Does anybody really care (care about time)
If so I can't imagine why (no, no)
We've all got time enough to cry
(Does anyone really know what time it is   Chicago)

Surgery Update. Nine out of ten patients surveyed.

You've seen the commercials, nine out of ten doctors surveyed....
 Well here is my experience.
"I will tell you that over 90 percent of the people who have this surgery are disappointed with the initial results".
Dr Holmes actually said that.
Before I had the surgery.
What the hell happened to the miracle man? Where did he go I want that guy doing the surgery!
He went on to explain that as patients we tend to assume that surgery fixes everything. You go in, go to sleep and when you wake up everything is better. In many many cases that is simply not realistic but as patients we tend to expect that. Such would be the case with my surgery.


So I had the surgery this past Tuesday. The surgery took a little over three hours and according to Dr. Holmes went wonderful. They ended up doing surgery on both eyes and when I awoke I was still seeing double. Disappointed? Yep, big time.


They had attached surgical thread to the muscles of both eyes and then started pulling on them to align the eyes. All I can say about that experience was that it hurt like hell even with numbing drops. Once the eyes were adjusted they had Edie in a chair across the room and I was to focus on her. Was there any part of her face that I could see singular vision of. There was. Her nose. Everyone in the room got excited except me.
Seriously was that as good as it gets?
He then holds up a Dilly Bar stick (tongue depressor) with letters written on it. The biggest letter was an "E". "Tell me if there is a place where you only see one E?"  There was at just over three feet away. Again all the folks in the room got excited. Me, not so much.


Seriously? After three some hours of surgery I was seeing single vision in a space no bigger than a quarter. I can understand why most people are disappointed after surgery.
I am now almost a week out of surgery and the quarter vision only is only slightly bigger. It could take eight weeks for this to get better. I am not impressed.
I put in the drops, hourly. I do the exercises four times a day and in the end the headaches are  intense. However everyone says DR. Holmes is a miracle man.....
So let's look at the positives.
I no longer wear a patch. My eyes are not level so I look like a Picasso painting, but the pirate look is gone.
I can see out of my right eye. Instead of being high and wide to the left with a tilt. it is now side by side with a little tilt. DR. Holmes feels my "mind" will fix the tilt. I feel I might have killed that fix with the alcohol I drink (just kidding, but really turn one eye ten degrees to the left?).
I get to drive and go back to work on Wednesday.
I have a follow up appointment with Mayo on the 22nd.
I am hoping that things change between now and then: the 22nd.


Turn around, Every now and then I get a little bit tired of listenin to the sound of my tears
Turn around, Every now and then I get a little bit nervous that the best of all the years have gone by
Turn around, Every now and then I get a little bit terrified and then I see the look in your eyes
(Total Eclipse of the Heart  Bonnie Tylor)

One Last Chance.. A Surgery Update

Sorry about the back to back posts, but I wanted to give you an idea of what the world looks like with double vision. I also wanted to give a quick update on what is going on and I didn't want to try to do that in one post.
So how is it going you ask?
Well the good news is that I still have a chance. It's a pretty slim chance at best, but there is a chance. If I want to get back to singular vision then I am pretty much gonna need a miracle. Working in my favor though is that I will be in the hands of a gifted Mayo Clinic surgeon who, everyone I talk to believes, can work miracles. Lets hope he has one more left.
So where did the wheels come of this time? I was at the Mayo Clinic meeting with the orbital surgery and plastic surgery teams when I heard that damn sentence again.
"I am sorry Mr. Engnell but there is nothing we can do to fix your eye".
The concern is where the eye is located and the amount of work that would need to be done. In their words, they have a better chance of leaving me blind in that eye then they do fixing it the location of the eye. I have now heard this from North Memorial, the University of Minnesota and now the Mayo Clinic. So there will be no more surgeries on the orbital bone and the placement of my eye. It is where it is and we will go forward with what we have.
So what does this mean?
Since my eyes can not be aligned the chances of having a single field of vision are pretty much gone. Yet they all say if anyone can pull it off it would be this one surgeon at the Mayo Clinic. He will need to catch some luck but he has done it before. The risk here is that we are probably only going to get one shot at it. So the surgeon will do his best, but close might be the best that we can hope for.
If he can't get me to single vison but can get it close, then he feels that they can create a set of glasses that can correct the double vision. We wont know anything for sure until I am in the operating room. Again, close might be the best that I can hope for.


The surgery is set for October 9th.
I need to be down there on the 8th so they can do pre-opt work. The morning of the 9th is the surgery. The afternoon of the 9th they will do the eye adjustments. I have to be back on the 10th for final adjustments and then they send me home.


Doing the surgery will be a tall lanky Brit named Dr. Holmes (and no his first name is not Sherlock, but that would have been really funny).

He comes highly recommended and is the one surgeon most hospitals and doctors end up recommending for their seeming impossible or miracle needing cases. I guess I now fall into both those categories.

Dr. Holmes has done it before! Pulled off a miracle that is. Many times if you asked other doctors.

I actually met one of his patients.

Not at the Mayo Clinic but at the state fair of all places. I was listening to a band when this lady walks up to me and starts asking me about my eye and what I was planning on doing to fix it. It turns out she needed a miracle too. She was born with double vision and had it throughout her life. She had multiple surgeries but was never able to get one that fixed her vision. She was finally told she would have double vision for the rest of her life. Then someone recommended she try the Mayo Clinic. So a few years ago she contacted them and they introduced her to Dr. Holmes. He was able to correct her vision to the point where she only needs contact lenses to see perfectly our of both eyes.

“My amazing miracle man” is how she described him.

I don’t remember her name. I don’t remember where she was from, but here is the picture that was snapped of us at the state fair. She gives me hope that there is still a chance.

Let’s hope Dr. Holmes has one more miracle in his pocket.

We spotted the ocean at the head of the trail
Where are we going, so far away
And somebody told me that this is the place
Where everything's better, everything's safe

(Walk On The Ocean  Toad The Wet Sprocket)

A Guy Walks Into A Bar....

I was sitting in one of my favorite watering holes with a friend a couple of weeks ago when a guy walks in, sits down next to us, takes one look at me and says “Hey, look a pirate."

I get that a lot. I have learn to roll with it as much as possible. I’ll just smile and go on my way. Once and a while I might throw an “AARRRGG” at the kids when they say it, but when adults say it I just try to ignore them.

In their defense how often do you see a person walking around with a black patch covering their right eye? It's just that after 14 months the fun has kind of gone out of looking like I am an extra on a Disney set.

So I thought I would try to show you what I see when I remove the eye patch. In case you were wondering…

The image on the right is a painting done by an artist named Ken Kimball. He was left with double vision after a brain injury. When he started to paint again he decided to paint how he now viewed the world.

This painting is the closest I could find to what I see when I remove the patch. The only difference is that, in my view, the second image is up higher to the left and tilted to the right.

The other issue I have is that the muscles surrounding the eye were damaged during the accident. This gives the doubled image the ability to move when you walk or turn your head.

All of this makes doing anything with both eyes problematic. So I wear the patch.

As for the guy at the bar? A couple of minutes after he said it he was apologizing for being insensitive and bought me a beer. That works.

Fill my eyes with that double vision,

No disguise for that double vision

Ooh, when it gets through to me,

It's always new to me

My double vision gets the best of me

(Double Vision  Foreigner)

Never Fold Pocket Two's

I enjoy playing Texas Hold'em poker.

There is a hand that most everyone plays...
Pocket Two's.
"You never lose with pocket two's." is what they say and a lot of times they are correct.


Well I am sitting on pocket twos for tomorrow and not sure how the deal will go.


My appointment at the Mayo Clinic is at 2 pm. It is going to go one of two ways. Real good, or real bad. I have prepared myself for the real bad scenario. Don't get me wrong, I would love to have the real good outcome, but I have already heard the bad words from the U of M and North Memorial.
I have heard it twice now. "I am sorry Mr. Engnell, there is nothing that we can do to fix your double vision." There is even a team at the U of M waiting for me to be told this so that they can help take the next step. I just don't know what that next step will be.
It almost for sure includes yet another surgery. But a surgery to do what? Fix my eyes? Remove my right eye? Or another option is to leave it alone and let it be, but sew it shut so I can not use it.


Which happens
Do I catch a runner on the flop?
Or a two on the river?
I know they are all poker sayings but that is what I feel like right now. Do I catch a miracle with this doctor and he is able to pull off some kind amazing feet that will have me using both eyes again. Or is this all a waste of time and I need to adjust to a life of using only one eye.

A lot is riding on tomorrow.
I will let you know how the deal goes.
Every gambler knows
That the secret to survivin'
Is knowin' what to throw away
And knowin' what to keep
(The Gambler  Kenny Rogers)

One Week And Three Days.

Anniversaries:

Defined as “The annual recurrence of a date marking a notable event”.

So here we have reached the week in the year that I have come to dread, especially after last year.

Here is what I am looking at and they all have a similar destination.
My anniversaries happening this week.

On August 2^nd 2010 I woke up in the University of Minnesota hospital after having a brain tumor removed.

On August 4^th 2015 I woke up at the Mayo Clinic after having my stomach removed.

On August 5^th 2017 I woke up in intensive care at North Memorial hospital after an accident. Actually I woke up on the 6^th, but the accident was on the 5^th. I had 3 cracked vertebrae, a cracked skull, and the right side of my face crushed. Right eye all messed up.

The results (so far) that are due to these three misadventures. I have had 5 surgeries and been put under an additional 12 times for tweaks or fixes. That’s a grand total of 17 times going under anesthesia to fix things as a result of waking up in a hospital during one of these upcoming days.

So as you can guess I kind of want to skip this week.

I know I can’t skip the week but the anxiety still remains. Goal for the week? To not wake up in the hospital. I got this…… I hope.

So how am I doing with all of these anniversaries, well you have to take them by date.

On August 2^nd  it will have been eight years since my surgery and the reoccurring tumor has not made a second appearance. The good news here that the surgeons don’t think it will return. I had a final CT scan done a few months ago and there was no sign of the tumor. I was given the all clear. This chapter of my life is now over.

On August 4^th it will have been three years since I had my total gastrectomy. I got lucky. No cancer was found back then and I continue to live without the fear of Heredity Diffused Gastric cancer ever rearing its ugly head. The months following the surgery were pretty tough, but today I am fine. There are still foods that I can’t eat or if I do they give me trouble however my weight has stabilized. This chapter of my life will never end. Living without a stomach still sucks at times, but for the most part I am good with where I am at.

Then there will be August 5^th. It will have been one year since the accident. Where most of the injuries have healed, the eye is still out of whack. The University of Minnesota has done all they can and are sending me down to a doctor at Mayo who has “preformed some miracles in the past”. According to the U I am going to need him to perform one more miracle if I am to keep the eye.

I should know in the next week or so when my appointment at the Mayo Clinic will be. Stay tuned.

This week consists of work (full time job), 2 shifts at the store and the Hanover Harvest Festival on Saturday. Oh and the second shift at the store is on Saturday, during the Harvest Festival, just like last year…

I just need to make it to next week and I will be good.

Right?

Especially at night I worry over situations

I know will be alright

Perhaps it's just imagination

Day after day it reappears

Night after night my heartbeat shows the fear

Ghosts appear and fade away

(Overkill  Men At Work)

A Medical Update. The Hail Mary.....

Here is a short update from my appointment with the surgical team at the University of Minnesota yesterday.

Remember these are the folk that are supposed to do the key surgery to fix the double vision problem I am having. I have had to wait to see them until they were able to get my eyelid stabilized, which we believe that they have done. Now I just wanted to hear when the surgery would be so I could put all of this behind me.
I was not expecting this..
"I am sorry, but we can't fix your eyes. Everything that we could do would mess up your vision and possibly leave you legally blind. Again I am sorry but there is nothing more that we can do for you."
I just sat there and said out loud crap (actually I used a different word and I am pretty sure you can figure it out).

Here is the issue.
Usually if you experience double vision the view from the one eye is either vertically or horizontally impacted. So what you see out of one eye is higher or lower, or to the right or the left of what you see out of the other. Well my other eye's view is wide high and shanked to the left. And that is not the issue. That is fixable.
The problem now is that with all the scar tissue that has developed my right eye is not it the right place. Not only is that eye looking high and right, it is also kiddywampus. It is not level. So if they even try to bring the two views together, I still wont be able to see because one is tilted significantly to the right. The view will be completely blurry and no matter how much they try they wont ever become one.
So they can either fix the location of the eye or the orientation of the eye, not both. And in both cases doing the one surgery will make the other issue worse. They also told me that due to the amount of reconstruction done on that that eye socket and the amount of scar tissue in the area, I am "not a candidate for further eye socket surgery." So I am kind of stuck.
This is the second hospital network that is not willing to do anymore work on the eye. First North Memorial and now the U of M.

So what is next.
The surgeon at the U knows of a guy down at the Mayo Clinic who has had some success working with cases like mine. So I have a referral to go down and see him.
The problem there is that I still have an outstanding bill with them from my stomach removal procedure and follow up fun I went trough with that adventure. We have been going back and forth with my insurance company on this and if I want to get into see anyone then it looks like I am going to have to pay it. So I will. However, Mayo Clinic will not let me schedule this new appointment until that bill is cleared up. That is going to take a bit.
And if I get down to the Mayo and they can't help me..
We start the conversation about what is next including very possibly removing the eye.
Kind of running out of options here.


And with all of his strength he gave a mighty shove
Then a miner yelled out "there's a light up above!"
And twenty men scrambled from a would-be grave
Now there's only one left down there to save, big John

(Big Bad John  Jimmy Dean)

A Post From The Beach

Happy Tuesday everyone.
When we go on vacation one of the things I like to do is meet new people. This trip to the ocean is no exception.
Now I have met a few folks so far but the first guy kind of stands out.
His name is Tim. He is from New York. Tim and his wife own the townhouse attached to the one we are renting. He is retired and his idea of a perfect morning was to have his coffee beachside. He told me right away that he lives here six months out of the year and the fewer the tourist around him the better. So I was surprised when he asked me to grab a seat and join him for his morning ritual.
Now Tim is loud, complete with the stereotypical New York accent. He is opinionated. He is passionate. He loves his family and this country complete with all of its "idiots and morons". For a good thirty minutes or so we were agreeing, disagreeing, correcting each other and laughing. Although he also did try to sell me the townhouse we were staying in because I "seem like a nice enough guy". And by the way it was for sale, and he figured he could get me a good price on it but it needed some work.

As I mentioned we had been going back and forth for a good thirty minutes when he pulled a left turn with the conversation and wanted to know what I was selling.

"What?" was about all I could respond.
"Sorry" he responded "but most people who end up stopping by to chat on the beach at this time of the morning are either selling something or need money, and I noticed your shirt."
I was wearing my CDH1 mutation positive t-shirt. The money we paid for our shirts went to support further research on the mutation and look for possible cures. It is a shirt to remind me where I have been and what I have over come not some fund raiser.

He quickly added, " Don't get me wrong I am not mad, I have enjoyed our talk, but want you to know that it's ok to give me you pitch".

I laughed and assured him I wasn't selling anything and gave him the readers digest condensed version of my story. He was a little skeptical at first because I was wearing my eye patch and we all know that folks can't live without a stomach. Though he did have a buddy who knew somebody who had part of his removed he thinks.
So we chatted a bit longer and I decided to head back to the townhouse. I thanked him for letting me join him and maybe we chat again one morning before we leave and I left.

Later in the day we crossed paths again on the beach and I greeted him by name. His wife wife wanted to know how he knew me so he told here. "They're renting the unit next to ours. I told you. The guy without a stomach.
Even here I am the guy without a stomach!

I am figuring he will be telling my story when he gets back to the Big Apple.

All of his life, he's mastered choice
Deep in his heart, he's just, he's just a boy
Living his life one day at a time
And showing himself a really good time
Laughing about the way they want him to be
(The Best That You Can Do,  Arthur's Theme   Ronan Keating)