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)

All Signs Post East!

One of my favorite Jimmy Buffett songs is called “School Boy Heart”. The reason for that is that the lyrics seem to talk about this journey I have been on.
The song has lines in it like “Frankenstein has nothing on this body of mine” and a line I quoted in an earlier post “I suspect I died in some cosmic shipwreck, with all hands spread all over the deck…. Then some kind of obscene and unscrupulous mind, began to pick up what he could find. Added ice, shook me twice, rolled the dice.” I seem to fit both of those lines.

I mean they took my stomach out. I have cadaver bones in me. I have a wondering eye that just doesn’t work right. I wear and eye patch.
In general I am missing or have damaged parts. And the parts I have are not all working correctly.
The song just fits.

So I am going to stick with that song and add another line with a new connection.

The line goes “I came with nomad feet and some wandering toes.”
Nomadic feet. Wondering toes.

It could have said Drifting. Gone walkabout or meandering. It doesn’t matter what you call it I am going to do it and the journey starts tomorrow.

And I am not going alone.

A Father/Son road trip.

We leave Tomorrow. Our destination? North Topsail Beach, North Carolina.

How to go? what to do? Maybe we just make it up as we go.

If I were to play it safe I would plan our route, plan our stops, and plan some events. Make sure that we spent our time wisely. Plan, plan, plan. However where is all the fun in that? So on Thursday we will just point the car east and go.  Head towards Chicago and at some point in time take a right. Head south towards Cincinnati and take a left. Then drive until we run out of roads at the ocean.

All the while exploring and seeing what sort of mischief we can get into (yea we will have our smart phones in case we get lost). We have roughly 48 hours to make a 22 hour drive. So Jack and I will be able to take our time and see what’s all going on between here and there. We will figure it out as we go, that is why they call it an adventure.

A Father/Son road trip!

I will be bring a laptop and hope to write some while I am out there. It’s been a while since I last wrote anything and there is plenty of “stuff” going on. So I plan on spending some time writing.

But for now I am just heading east….

I got a school boy heart, a novelist eye

Stout sailor's legs and a license to fly

I came with nomad feet and some wandering toes

That walk up my long board and hang off the nose

(School Boy Heart   Jimmy Buffett)

Spare Parts Anyone?

Do you know that there is a lab at the University College London that is called the “Human Body Parts Store”?
There is also a place called the “Anatomy Warehouse” where you can shop for body parts on line. Everything from heats, brains, bones, livers and kidneys.

Having this type of service available back in the day would have made Dr. Frankenstein’s “experiment” go a lot smoother. He could have even paid with PayPal and got the points.

Why would I bring this up?

Well I am going back into surgery on Monday.

This time they are going to put another cadaver bone it. Another I say? Yep.
The first one was to replace the smashed plate underneath my eye that holds the eye in place. Well that one didn’t work so they took it out. They then used a 3D printer to create a replica of my eye socket and then built me a custom plate and put that one in. It was made out of a cadaver bone. Well then they decided that wasn’t working so they took that out and replaced it with a leveling wedge (Not sure what that was made of though, but most likely a cadaver bone). Now they have decided that they are going to have to go back in, leave the wedge in and put another cadaver bone in.

And yippee me, and as a bonus, I get to have my eye sewed shut yet again.

So why this surgery.
I am losing vision in my right eye.

The vision is leaving slowly, but quickly if that makes any sense. A few weeks ago I noticed that there were times when I would have problems seeing out of the damaged eye. It would be blurry or so dark yellow that I couldn’t see anything. So I would blink a few time and most of the time the vision would clear. Now this is happening all the time. My vision is always blurry and it gets a little worse everyday. The images I do see might be flooded with dark yellow, red or grey. I can blink all that I want and it doesn’t clear up. This all happened in a matter of weeks.

To top that off my eye lid rolled back in on the eye again. That’s like the fourth time that has happened.
Now the right eye wasn’t aligned with the left so I don’t use it all that often. And I am getting used to seeing out of one eye, but I was still hoping for different ending to this little misadventure. The folks at the University of Minnesota are still working on it, but my confidence in a positive outcome is waning.


I was kind of looking forward to the next surgery because it was supposed to be the big one where they work on aligning the eyes again. Now with this latest setback that surgery has been pushed back indefinitely and two more surgeries have been added. So I will be having this one on Monday. Then we can schedule the alignment surgery 3-6 month later and then a third surgery after that to fix some  cosmetic issues with the eyelid.
The problem is that the last two surgeries will only happen if this upcoming surgery on Monday is a success. If not all bets are off.

I really don’t want to lose my sight in that eye.
It would really suck.

Hold it all together, Everybody needs you strong

But life hits you out of nowhere, And barely leaves you holding on

And when you're tired of fighting, Chained by your control

There's freedom in surrender

Lay it down and let it go

(Just Be Held   Casting Crowns)

When Stomachless And Causing Problems Pays Off

Quick Update From Yesterday's Surgery.

As far as we know the surgery went fine. My eye is sewed shut and will remain so until next Wednesday. So once we understand how the eye is working we can plan our next move.
This is my fifth or sixth surgery since the accident. Before each surgery I have mentioned to the surgical team that I do not have a stomach, we talk about why and then it is never mentioned again.


That is until yesterday.
I was told by a couple folks to make sure that the Anesthesiologist knew about it. So when he came in and did his spiel I told him that I had a total gastrectomy and about some of the challenges that could bring. He asked a lot of questions and said, "Ok that is important to know, thank for telling me" and excused himself (they were still working on getting the I.V. started).
When the Anesthesiologist returned he notified me that based on what I told him he was changing how they were going to change how they managed my health while I was out. Like I said earlier I have had a few surgeries with this misadventure, but this is the first time anyone came in and told me that they were changing my care due to the fact that I told them that I was stomachless. They may have changed it, but if they did they didn't tell me.


What did they change? The concern was something coming back up the esophagus and ending up in my lungs. So if I remember this correctly, instead of using medicine to make sure that nothing comes back up the esophagus, they made the decision to put a breathing tube in to block any chance of something ending up in my lungs.
I can only believe that the other teams did similar things but just did not inform me of it. This was the first time that someone came in and said I am going to change what I do based on this information.
I guess it pays to be a pain after all.


By the way to put the wedge they had to remove the custom plate. So I asked about the custom plate that they put in and if they were going to save it in case that for some reason this surgery went bad. The plate was made with a cadaver bone, so the short answer was no you couldn't save it to use again at a later date.
His question to me? Do you want it?
Heck Yea!


Everyone is helpful, everyone is kind
On the road to Shambala
Everyone is lucky, everyone is so kind
On the road to Shambala
(Shambala  Three Dog Night)

Stomachless and causing problems.

One of the problems being stomachless is that people don't understand it. 

The concept of living without a stomach is completely foreign to them. You are constantly explaining why you don't have a stomach, how your plumbing works, and how your life changed after your total gastrostomy.

I would like to say that this limited to the everyday person on the street, but many medical professionals do not comprehend it either. It is just not that common of a surgery and CDH1 mutation, where the number of affected families grows every day, is still very rare.

Due to this you end up becoming your own health advocate.

For example.

This past week I received a call from the U to go over the prep and details on Monday’s surgery. You know details like where the surgery is being done. When the surgery is. What time I need to show up. Reminding me that I need to get a pre-op exam before Monday. All pretty normal stuff.

Then they told me that I could only drink clear liquids and have nothing to eat after midnight on Sunday.

Well there is a problem.

It is not that this is anything new. I knew they were going to say it. This is not my first surgery. What changed was the time that this surgery was going to take place at. Before now all of my surgeries/sedations (insert dilations for strictures here) have been right away in the morning. This surgery is not scheduled until 2:30 in the afternoon. I don’t have to show up before 1:00PM.

The surgery is one hour long, with and they estimate an hour in recovery.

So if I eat right after that, I will have gone almost 17 hours without eating and that is if I eat just before midnight. Not a big fan of eating that late. So it will probably be closer to 20 hours without food, if I eat around 9pm.

For someone without a stomach that is bad. We need to eat often, in small quantities. As I have mentioned before, what works best for me is to graze all day. I usually have one meal so to speak, and then just munch my way through the rest of my activities. It works for me. My weight has stabilized and even if I go three or four hours without food I am fine, In this case we are looking close to 20 hours without food and that is if I feel like eating right after the surgery. I am not sure I am going to be up for that.

So I let the scheduler know that this timeline would not work for me and asked if this was a hard and fast rule that I couldn’t break or was there some wiggle room with the midnight timing. I went through the whole stomachless thing and she did not know what to say. I get that a lot.

She asked if it was possible to “eat a large meal as my late meal to carry me over?” I explained to her that there was no such thing as a large meal for someone without a stomach so she would have to come up with a better plan. She said she would have to get back to me and with that we ended our conversation.

In the end I got a call back a few hours later with some options.

None of them were great options, but options none the less. The midnight thing is just something they tell everyone. It covers them no matter what time the surgery is. The actual number is closer to eight hours. Well they actually said eight hours, but they said eight hour before I checked in, not when the surgery was scheduled for. We agreed to disagree on that topic. On their timeline I can get up and eat as long as I do it before 5AM. Not gonna happen.

I talked with my doctor and she suggested that I get up as early as possible and if I felt like I needed something have a piece of toast and her words “don’t tell them, you should be fine.”

I learned a number of years ago that I needed to become my own health advocate. Too often in today’s world we get told standard answers that covers the person answering the question no matter the question or the industry you are asking the question of. If these medical misadventures have taught me anything is that you need to ask why. And if you don't like the answer ask again and again until YOU are comfortable and satisfied with the response.

In the end it is just about you.

I will post something after Monday’s surgery. Thanks for stopping.

These are the contents of my head
And these are the years that we have spent
And this is what they represent
And this is how I feel

(Why  Annie Lennox)

"Sometimes I just think funny things" Dudley Moore, Arthur

So at the end of my last blog, I made the statement that:

“Then once that is completed they can go in with a screwdriver and adjust the alignment screws on the sides like we did with the automobile headlamps.”

Remember that?

I thought it was a funny line so I added it.

It was just supposed to be a funny thought.

Then there was today.

Due to a bunch of different reasons I am moving my care to the University of Minnesota from North Memorial. This has nothing to do the with the care I received from North Memorial they have been absolutely amazing top to bottom. It is just better for my family and I if we move to the U at this point in my recovery.

I met with the DRs from the U of M this morning.

The next surgery is scheduled for this coming Monday. They are going to go in, remove the custom plate that was put in and put then replace it with the wedge. The wedge will raise the eye and move it forward. Once done then they can go in and work the muscles around the eye to get everything into alignment.

That is where the conversation got a little wonky.

Once I heal, a second surgery will take place. A different doctor will handle the procedure to do all the aligning. They are going to go in and make “adjustments” to the muscles surrounding the eye to get it as lined up as possible. They will then close me up and move me to recovery.

Once in recovery they will make the final “adjustments” to get the eyes lined up once again for single vision.

Adjustments in recovery you ask?

Remember the comment about going in and adjusting the headlights using the screws?

The statement I thought was funny.

It was just supposed to be funny.

Yeah, that is what they are going to do, sort of.

I will not have screws, but they are going to attach surgical thread or something to the muscles surrounding the eye.

Once in recovery they will then pull on each thread/string/wire/clothes hanger/whatever separately until they get the eye in a place where it lines up with the other one and I have single vision again.

Sounds painful.

My hope is for good drugs.

And I love the clothes I wear
Where their life goes I don't care
It's my price I'm proud to pay
I'm a freak

(Freak   Kiss)

Chasing Squirrels... A Medical Update

Now I might be aging myself a little bit here, but remember the round/square headlights on the older cars?

For one reason or another one would get out of whack and it wouldn’t look down the road quite right.

My dad would always ask me if I was chasing squirrels with that headlight because it was always running pretty high up in the trees. It was his subtle way of telling me to fix it.

So I kind of have a headlight/eye out of alignment. It is not up chasing squirrels in a tree out of whack, but out enough that I cannot use the eye. I have to wear an eye patch pretty much 24/7.

I have had five surgeries on that eye and have been working on setting up the sixth. Now I haven’t posted for a while and thought this might be a good time to give you an update on where my recovery is at.

Now this particular story starts with a comment about someone else.

Recently I was meeting with the surgeon who is, scratch that, was going to do the next round of surgery. The surgeon was saying all the right things and she was confident in the procedure, but then she made this comment;

“I was just talking with the lady in the next room and I was able to tell her that I was 90% sure that I could fix her problem. I am nowhere near that with you. My goal is to see if we can create a sweet spot in your vision field that you can function with.”

SERIOUSLY?

I think I will be getting another opinion. Thank you!

So I headed to the University of Minnesota and met with an eye surgeon there. Regrettably the news didn’t improve much. They ordered a new CT Scan which I had the next day. The team there that is going to review the CT scan and then let me know how they would proceed. However right off the bat they told me that they may need to rebuild the eye socket again. The concern is that my right eye is significantly lower and sunken further back than my left eye. Due to this the surgeon I met with doesn’t feel they could adjust the muscles around the eye enough to get it into alignment. He still needed to see the CT Scan and meet with the rest of the team, but that was his initial thought.

So I met with The DR from the U last Thursday and had the CT scan done on Friday. On this past Monday I met with the surgeon who did the last round of surgery at North Memorial and he concurred…… 

With the U of M….

At least kind of...

Like at the U Of M, he doesn’t feel that the muscle surgery will work because my eye are too far off kilter. His recommendation though was different. He wants to go in and put a wedge in to try to get my eye to align. A wedge?

This will give you an idea as to how tired I am of all of this, this is what popped into my mind. I picture one of those wooden leveling wedges that you use on door and window frames and the DR. with a hammer just tapping it until he thinks it’s level and then snapping off the excess.

Then once that is completed they can go in with a screwdriver and adjust the alignment screws on the sides like we did with the automobile headlamps.

It could work.

And the squirrels could rest.

 

I've always listened to your point of view

My ways I've tried to mend

And I've always been a patient man

But my patience has reached its end

(Blue Morning Blue Day  Foreigner)

Not A Long Post.

Just so you know I write this with a heavy heart today.
Why do we do what we do???
This question is a question that I have asked myself time and time again. What if I hadn't made the decision to have my stomach removed. Where would I be right now?


I think about it a lot at these points in time. Times when life reaches out and slaps you across the face saying you got nothing. You see a young lady I had a chance to get to know some died on Monday. From brain cancer. She was 26 or 27. Way too young.
Now on Saturday I will be going to a funeral. For someone I had recently gotten a chance to know, to support the guy she was supposed to marry and pay respect to folks I didn't know.
All along knowing that I survived, but I am not sure why.


For those of you who know me, know that I had a brain tumor in 2010. In the end the tumor came back benign. I now know two other people who had brain tumors, neither were benign and both are gone now. First Mike and now Allie. It really sucks. Cancer sucks.
Why was mine benign where there's were not. Why am I still here, when they are not?
What happened in my life to make me miss the shit that comes with cancer.
Don't get me wrong, I am happy it passed me by, but I wonder why me?
My tumor was benign. Case closed. I have had six MRI's and the tumor has not reappeared.


Then in 2015 I had my stomach removed due to crappy luck. The crappy luck part was that my little sister had to get breast cancer in order for me to find out that there was a 86% chance that I would catch a terminal cancer. She had to endure so much. She had to go through so much.


It is just at times like these I wonder what happened? There are no answers. Life just happens.
Cancer just sucks.


Please don't feel like you need to post anything to this blog. Sometimes I need it just to rant a little.
Thanks for listening...


Pack my bag and let's get moving
'Cause I'm bound to drift awhile
Though I'm gone, gone
You don't have to worry
Long as I can see the light
(Long As I Can See The Light  Creedence Clearwater Revival)