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)