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)