Cheers!

As 2017 heads out of town, I thought I would throw a little levity towards at year that has been particularly tough.

Do you remember the TV show cheers? The opening music sang about how everybody wants to go where everyone knows their name.

I think deep down we all want that place somewhere in our life. Whether it is your local restaurant, favorite bar, store, or place of worship we all want that place where they know you. I mean really know you.


For me that is the River Inn in Hanover.
They call me by name. I get hugs. The owners know me. The staff knows me. Other patrons know me. They know what I like to drink and where I like to sit. They know what I have been through over the past few years and they check up on me. It's my place.


Now where your place is and at what level they know you at is very personal. You get to decide where it is and how well you want them to know you. And everyone's place is different for personal reasons. Once you have chosen this place and they get to know you then the place becomes special. And since you chose it, it become in a sense your place.


Well except for when it isn't, so let me tell you about yesterday.
I got a new place where they now know me by name. I didn't pick it. If I had a top ten place list where everyone knows me, it wouldn't had made that list either.
They know me by site and get my order ready when they see me.
This location pretty much sums up the last few months of 2017.
The place?
Walgreens pharmacy.
Yep I pulled into the drive thru to pick up a new prescription and before I can get my window all the way down the lady goes "Hi Roger, I have something for you." She then disappeared and came back with my new prescription. You know the year has been tough when the pharmacist knows you by name.
Here is hoping that 2018 has less pharmacy visits than 2017.


HAPPY NEW YEAR EVERYONE!


Sometimes you want to go
Where everybody knows your name,
And they're always glad you came;
You want to be where you can see,
Our troubles are all the same;
You want to be where everybody knows your name.
(Where Everyone Knows Your Name.  Gary Portnoy &Judy Hart Angelo)

Inner Strength

First off I would like to say Merry Christmas, and Happy Holidays. Thank you for reading or continuing to read this blog.

Now It may or may not be a strange topic to write about during the holidays, but it has been on my mind a lot lately and I wanted to spend this time and write about it.

Inner Strength. What is it? It is defined as the strength within yourself, it makes you strong enough to stand up to others. If a person is sad for some reason they may rely on inner strength to pull them through whatever the case may be.

I am a member of a number of Facebook groups that support and connect people from all over the world who are dealing with the CDH1 mutation. These folks have to make the same decision that my sister and I did. Do they make that decision on whether or not to live with the threat or have it removed? In these post there is fear. There is anxiety, and there is hope. And in all of these post there is a point in time where the persons inner strength kicks in and they make the decision that is best for them and their family.

I can remember after I learned that I had tested positive for the CDH1 genetic mutation that for a while I was just numb. I couldn’t think. I couldn’t focus. I could stare at my computer screen at work and everything would just go blank. All the sudden I would snap out of it feeling that I had only been staring for a few minutes only to find that an hour had gone by.  It took quite a long time to come to terms with what was going on and I found when I look back sometimes I wonder how I made it through. Even today I struggle with my decisions.

This is my third Christmas stomachless. I would like to say that it has gotten easier as each year passes, but for some reason this holiday has been accompanied my extra anxiety over the past few years. In 2015 I was struggling with strictures and losing weight. In 2016 the company I worked for was sold and my position was eliminated. Now this year I am struggling to get healthy again after my accident and still cannot use my right eye.

It just seems that there has always been something that weighs on my mind during this time of the year.

Inner strength is what you rely on to get through this and not the let blahs get you down. I know I could, but I won’t let it. I can’t let it. I have been at too many funerals this year. I have seen too many doctors again this year. I have friends who have struggled and continue to fight health, wealth and employment issues.
This year for Christmas we are in North Carolina with my daughter and her husband. I just heard the little guy upstairs and soon he will be down here smiling and lifting spirits.  He has been battling an ear infection but doesn’t let it get him too down. You see when the music starts, no matter where it is from, he smiles and bops is head to the music.

Tonight we are going to a late mass, at a small church were a good friend of mine is Pastor to hear him tell the tale of a journey over 2000 years old. A journey about fear, anxiety and hope. A journey where inner strength took over a led a young family forward.

So now matter what your circumstances are. No matter what situation you find yourself in. My hope is that you reach back and rely on your inner strength to get you through it. In the end you might not know how you made it through it but the important this is that you did.

Merry Christmas.

Getttin' strong now Coming on, now
Gettin' strong now Gonna fly now
Flyin' high now Gonna fly, fly, fly
(Gonna Fly Now  Bill Conti)
(From Rocky 1)

Scars...

I was scanning through Facebook posts the other day when I came across this image and decided that I wanted to share it.

I have the wounds. I have the scars. Heck I even added a few more scars yesterday with the latest surgery on my eye. So at the end of all this, what will my story say?

Right now I am kind of a mess.
My right eye is completely covered with a bandage so I can't tell what the eye is going to look like. I can tell you that the doctor did say that healing was going to take three to six months and he also mentioned that it was going to look a "little rough' for a while.
I tried to get some clarity around a "little rough" but he said everyone comes out a little different. It's just that there is a big difference between having dark circles around you eye because you need a nap and what your eye looks like after taking fist to it. A BIG difference.
Well I am supposed to take the dressing off later this afternoon so I will know shortly.

The surgery went as about normal as it could with me. Meaning there was some slight complications. Instead of taking two hours to complete it took three and a half hours. The plan was to fix the bottom eyelash, but when they got in there they found that the top eyelash has started to roll inward also so they needed to fix that one as well. There was also a lot more scaring in the area then they had hoped for so they needed to clean that up before they could continue with the repair work. In the end though the surgeon was pleased with the outcome and feels confident that I have this part of the journey behind me.
The next step will be trying to get both eyes to play nice together again. Which will mean another surgery.

I don't know what my story should say, but this chapter heading should be titled.
Hey Idiot Don't Do This Again!

It's my life
And it's now or never
I ain't gonna live forever
I just want to live while I'm alive
(It's My Life  Bon Jovi)

November..

I am going to take a break from the latest misadventures of Roger to get back to the topic that this blog has been about. My life without a stomach.


You see November is stomach cancer awareness month. It gives me time to reflect and remember why I had my stomach removed. A time to remember why all the trials and complications were worth it.


Don't get me wrong there are days when not having a stomach really sucks and the upcoming holidays will magnify the suckness of the missing item. The office will be lined with treats and there will be the traditional holiday potluck. All of which I will need to steer clear of.
And before anyone says anything I know that suckness is not a word, but it fit.


Other than that eating is going well. I can eat one to two cups of food at a sitting. I have eaten more and in most cases it doesn't end well. I have found that eating five to six times a day is not realistic for me either so I have become a grazer. I am always eating something.
I make sure that foods I eat are high in protein and until my recent accident my weight had stabilized to a level that everyone seemed happy with. Now however I am working on trying to gain the lost weight back.
I used to get harassed by our family doctor that I needed to lose weight. "Just lose 10 pounds."  So I would lose 10 pounds and she would say good start now lets lose 10 more. Now when I go in it is "let's gain 10 pounds." There is just no pleasing her.

I can enjoy a cocktail or two. However I have found that alcohol effects me differently now that I do not have a stomach. Alcohol enters my blood stream much faster so I have to try to slow down as I drink. Mixed drinks and or wine work best which would be just fine if I didn't like craft beer as much as I do.
Supplements are normal part of my life now. I take calcium pills everyday, and since today is the third of the month, I started my day off with my monthly vitamin B12 shot.


I have had to tell the story of why I had my stomach removed to a lot of folks recently. A surprising number of them have been doctors and/or nurses. When that happens I wonder why they don't know about this CDH1 genetic mutation and it's link to stomach cancer. They should know right?
Then I remember how rare this is. In 2010 there were an estimate 110 families with the genetic link to cancer in the world. Recently I read somewhere that this number may have climbed to between four to five hundred families in the world. that is a huge increase, but in terms of the number of families this represents, it's the equivalent of a rounding error.
However we are making progress.
On November 11th, there will be a symposium going on in California surround stomach cancer and a stomachless friend of mine will be one of three people speaking there. There will be folks from all over there, so we are making headway in or quest to educate those who need it. To offer support those who need support, and raise money to one day break the link between this mutation and cancer.
Everyday brings us one step closer.


Happy Stomach Cancer Awareness month!

Like the fool I am and I'll always be,
I got a dream, I got a dream.
They can change their minds but the can't change me,
I got a dream, I got a dream

Oh, I know I could share it if you'd want me to,
If you're goin' my way, I'll go with you.

(I got a Name  Jim Croce)

Next Steps

So I spent part of the day with an eye surgeon where the sentence "Well, I got some good news and some not so good news for you". "What do you want to hear first?" was said.

Since I am an optimistic sort of guy, and it was early in the morning... I took the good news first.

The good news is that they can fix my eyesight. At least they feel they have a pretty good shot of doing it. There ended the good news.


The not so good news was that in order to completely fix my eyesight, it was going to take multiple surgeries. Now I knew that so that comment in and of itself was not unexpected. When I met with the University of Minnesota specialist, he said that they were going to have to do a few surgeries to get everything corrected. So hearing that today was anticipated.
The part I was not expecting was the urgency they are placing on the first surgery they need to do. It has nothing to do with the double vision and they are not going to address that until they get the first issue corrected. It also needs to be corrected soon or I could loose my vision all together in my right eye.
What is the first issue you ask? My eyelid. They are going to "rebuild" my eyelid.


After the second surgery on my eye, scar tissue built up under my eyelid which cause my eyelid to roll in on itself. When this happened my eyelashes were in direct contact with my eye and rubbing on it. When they did the third surgery, they made a small incision and rolled the eyelid back out. They then sewed the eyelid shut in hopes that it would heal that way. It didn't and the eyelid has rolled back in even further then it was before. The problem with this is that the rubbing on the eyeball will cause damage to the eye that is not reversible. They need to fix that ASAP.

The plan is that they are going to harvest tissue from my side and use it to replace the scared tissue under my eyelid. This will create a cushion behind my eye and prevent the eyelid from rolling back in again. According to the specialist I saw today this needs to be done now, so I can only imagine that I am not going to get a lot of time between receiving the phone call to set the appointment and the actual date of the surgery.


On a more humorous note.
The doctor was being very careful to explain exactly how they were going harvest "tissue" from my side to do the procedure. He was going on and on about for a bit and I couldn't take anymore. I told him I was running out of space in my skull for the stomach fat that everyone was putting in there. He just looked at me and stared. Some folks just don't get sarcasm..
What you are thinking?
A number of years ago I had a brain tumor. When they did the surgery to remove it they needed to fill the hole they made with something, so they harvested fat from one side of my stomach to fill it with. Now they are going to use fat from the other side to fix my eyelid. Now with all of the weight I have lost, I am running out of fat cells and with a second set of fat cells needed to fix my face, I am running out of space in my skull and face for additional fat to be added.


Things just keep getting more interesting.....


Hey listen here
Now I got mortgages on homes
I got stiffness in ma' bones
Ain't no beauty Queens in this locality (I tell you)
(Fat Bottom Girls   Queen)

Taking A Break...

I wanted to post a quick update.
If you hadn't figured it out, I am taking a quick break from all of the medical crap going on with me right now. In fact Edie and I are in North Carolina visiting Jenny, Sam and Remi. It took a bit for the little guy to get used to seeing me with the eye patch on but all is good and he could care less.

For the most part I feel fine. My right eye is still pretty much useless. I wear an eye patch or just keep it shut all day. The eye lashes have rolled back inwards, it doesn't hurt as bad as before, but still irritating none the less. My right eye is far enough out of alignment that using it is impossible and the double vision give me a nasty headache within in minutes.

This week I have another appointment with the surgeon but they don't have an answer for the double vision. The plan is to head to the U Of M and meet with their optical specialist going foreword.

But until then if your lookin for me, I am in Carolina.

Surgery one step forward....

Apparently the surgery was a success. "Couldn't have gone better." At least that is what they are telling me.I don't know. I still have double vision. At least I do when I can see out of my right eye that is.
In order to help with healing, with the exception of one small section, they have sewed my eye shut. The appointment for removing the stitches is tomorrow so we will see how my vision is once I can see with both eyes again.


One of the side effects of having my eye stitched shut is that the stitches cause my my eye to weep all the time. With the weeping comes the crud that forms in the corners and along the bottom of the eye. if it doesn't form into crud, it runs down that side of my face. All in all it is not a lot of fun and I cant wait for the stitches to come out.

The other problem with all this weeping and crusting is having a goatee. All the crud and the goo ends up in there. I scrubbed and scrubbed trying to get keep it clean but it proved to be way to much work. So for the first time in close to 20 years, it is gone.
Don't know if I like the look.
Edie hasn't seen me yet.
The last time I took it off Maddie was very young and she fell on the ground laughing and pointing at me.




I am hoping for a more positive response this time.


We will see.


I’m starting with the man in the mirror
I’m asking him to change his ways
And no message could have been any clearer
If you wanna make the world a better place
Take a look at yourself, and then make a change
(Man In The Mirror  Michael Jackson)