Tuesday, August 14, 2018

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)

Monday, July 30, 2018

One Week And Three Days.

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 2nd 2010 I woke up in the University of Minnesota hospital after having a brain tumor removed.
On August 4th 2015 I woke up at the Mayo Clinic after having my stomach removed.
On August 5th 2017 I woke up in intensive care at North Memorial hospital after an accident. Actually I woke up on the 6th, but the accident was on the 5th. 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 2nd  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 4th 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 5th. 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.

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)

Thursday, July 12, 2018

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)

Tuesday, July 3, 2018

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)

Wednesday, June 27, 2018

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)

Wednesday, May 9, 2018

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)

Tuesday, March 27, 2018

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)