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)

Friday, January 4, 2019

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)

Tuesday, December 4, 2018

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)

Tuesday, November 6, 2018

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)











Sunday, October 14, 2018

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)


Friday, September 28, 2018

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)