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)

Last Few weeks... Part 4 Friday Appointment

Here I go again.....
Tomorrow morning at 7:30 I go back into surgery. I have added them up and this will be my 4^th surgery and 17^th time I have been fully sedated since August 2015. I’d cry “UNCLE’ but I am so far beyond that it is ridiculous.


So there are two goals for tomorrow’s procedure. First is to put a custom plate in that should be able to hold my right eye in place. They found someone who was able to create the plate and now I just need to get it installed. I am assuming that since it is a “custom” plate that they are going to charge me a pretty penny for it and in my opinion should probably come with “free installation”. It won’t, but one can hope. The best that I can hope for is that it will fix the double vision and allow me go back to being able to see through both eyes at the same time. I haven't been able to do that since the accident.

Second is it roll my eyelash back out. According to the surgeon there was less than a two percent chance that after the first surgery scar tissue would cause one of my eyelids to roll back in on itself so that my eye lashes were in contact with my eyeball.

Less than two percent chance, huh… He had only seen it once before, huh…. He wasn’t worried about it, huh… Shouldn’t be an issue, huh…

Very rare…. RIIIGGGHHHTT..

Now he has seen it twice. It’s not a lot of fun let me tell you. My eye always aches and waters consistently. They will fix that also.

I am both excited and worried about this surgery. Excited to be able to use both eyes again. I am going on almost two months without being able to use my right eye. Two months with having daily pain in that eye even when I don't use it. I wear a black patch on it as often as possible and when the patch is not on that eye has to be closed. It makes doing most things difficult. I can see out of both eyes, but since they are not aligned it makes using both at the same time impossible.

I am worried about the “what if’s”. What if this doesn’t fix the problem. What if I do this and after surgery tomorrow I still am still seeing double. I have discussed with a couple of doctors my options if that does happen and I really don’t like any of them.

A lot riding on tomorrow.



I come around all broken down and
Crowded out And you're comfort
Sometimes the place I go
Is so deep and dark and desperate
I don't know, I don't know
(Every Day   Rascal Flatts)

Last Few Weeks..Part 3 What I Learned Doctor Visits

So How did yesterday go?  Some good news, some not so good news. Seems to be the story of my life recently.

First the good news. And the shortest part of the update. The brace is gone!
After 6 weeks of having to wear a stiff plastic brace 24/7 I am now free of it. My neck is still sore, but only due to lack of movement. The brace was made to restrict my movement and let me tell you it worked just like it was supposed to. I am so happy to be rid of it.

Now the not so good news.
Both doctors I saw today, took one look at my right eye and could tell that it moved. My right eye has slide back and dropped some in the eye socket. They didn't need tools to tell. They had me open both eyes and could see that they eye had moved. The risk here is that they need to get it put in place as quick as they can before there is any damage to the eye. Like I said the not so good part of the day.
Next came more disappointing news. They can not schedule the next surgery as of yet. They have not been able to find any place to have the custom plate made. The regular plates that they have work 90% of the time, they just wont work for me. Go figure.


So what's with this plate? Well to explain that you need to see what shape my face is in (see image). Now this image was taken after my first surgery, but before the second emergency surgery.
The bumps you see along the left side of the image are the plates that were used to rebuild that side of my face. They are all still in place where they are supposed to be with the exception of one plate and that is the one causing all the problem.
It is really hard to see, but there is a plate on the bottom of the eye socket on that side. That plate is the one that needed to be remove during the emergency surgery. It was binding with the tissue around my eye. Without that plate my eye is just sitting in there with no support. That is how it has been able to shift it's position

Now in case you wondering, I did ask about the chance of my eye just falling out and they assured me it wouldn't happen. That would be awkward.

So what is next? On Monday, the surgical team will be meeting with another vendor they feel can create the plate. They will use a mock up of my eye socket that they created with a 3D printer and work to fit the custom plate into the mock up first. Once they are comfortable with the fit of the plate they will schedule the surgery.
My feeling I get is that they are going to try to move fast on getting me in and the plate put in place. I can only hope so, this one eye thing is for the birds!
And I wait....

Long promised road
Trail starts at dawn
Carries on to the season's ending
Long promised road
Flows to the source, gentle force, never ending, never ending
(Long Promised Road   Beach Boys)

The Last Few Weeks Part 2 What I Know.

So it has been just over a month since my accident and I am healing or so I am being told. Tomorrow is a big day with a series of doctors appointments to check my progress.
I still don't remember what happened that night, however I have learned a few things and can make some accurate assumptions on other things.

August 5th was the Hanover Harvest Festival. It's our yearly community event complete with a parade, a farmers market, a 5K race and ends with a band and fireworks. Every year I work at the local liquor store at some point in time. It is one of our busiest and most fun days of the year to work.

This year was no exception. We were busy right up until close. As we were closing the fireworks started and we stepped outside the store to catch some of the show. We then headed back into the store to finish closing duties and prep the store for the next day.  By the time we were done, we were locking up the store around 10:30. I remember all of this clearly.

There was a band playing next door and we have gotten to know one of the band members and his wife through the store and we stopped by to say hi and chat with them a bit. All in all we done at the store, had time to visit with the band and out the door by 11:00 pm. I can remember leaving starting my moped and taking off the next thing I know it is the next day and I am in the ER.


I have been back to the accident site four or five times hoping it would help jog my memory but with no success. However I have been able to piece together some things. I was found at 11:45 by a father and son who were walking home. According to the first responders, base on my condition and the amount of dried blood, they figure I was laying there for about a half hour before anyone found me. I have had meet the father and have been able to thank him for calling 911 and sitting with me until help arrived.


I know that two things happened. First as I came around the corner I either hit something with my moped or blew the front tire out. Either way the front rim and tire on my moped are destroyed. There is a huge missing section of the rim. The front fork of the moped is damaged and does not turn anymore. Front tire blown and I was sent over the front handle bars of the moped which turned me into a human dart.


This leads us to the second thing we have determined. That is that I hit a sign on my way over the handle bars. I hit the sign with the right side of my face which caused all damage to that side. So this allows us to answer the question "what happens when an stoppable force meets an unmovable object". I know the answer now.


Tomorrow is a big day with doctors appointments so I will update once I know more about surgery dates.
And Thank You for all the messages and notes as I work through this.


Roger

The Last Few Weeks... Part 1

I am sorry it has taken a while to write about the last few weeks, but I am struggling with what to write. It is hard when you just don't remember anything and have no answers to what happened. So my thought is that I will put down what I remember in parts and see if I can piece something together at the end. So please bear with me.


Saturday evening August 5th at 11:45pm or so, I was found in a pool of blood on one of the local side streets in our small town. I was transported to a local trauma center where it was determined that I had three fractured vertebra and a cracked skull. To add to it the right side of my face was smashed and most of the right side of my body was covered in road rash.
The first thing I remember is that I was unable to breathe and was being held down. People were trying to communicate with me, but I don’t remember what was being said there were just too many people talking. Finally, all the “talking” stopped and one voice said that they were going to remove the breathing tube. I followed that voice and the tube was removed and I could breathe again. That was after 4pm the following day.
I spent the next day or so in ICU and then was transferred to my own room where I spent the rest of my time. In total I was in the hospital eight days. My right left eye socket has some damage to it, but the doctors feel it will heal. The right side of my face and right eye socket needed to be rebuilt. I have had two surgeries on that side five titanium plates put in. I will still need at least one more surgery on that side of my face, if not two. Right now I can see out of  that eye, but it does not line up with my left eye so I see double of everything.

I am now at home, slowly recovering, but still left wondering what happened. I am also back to where I was when I came home from the hospital after having my stomach removed. I am on a soft diet and have been loosing weight. Before the accident my weight had stabilized to around 189-190 pounds. This morning I weighed 173 pounds. The lowest I have ever weighed, even with the strictures, is 169 pounds.
I have some important appointments coming up on September 14th.
First is with the neurology team to talk about my back. I am in a neck brace that restricts my head and neck movements. I have to wear it 24/7, even in the shower. There is talk about me having to have this on for three months. I am hoping that timeline changes on the 14th.  
The second is with the plastic surgeon. They are using a 3D printer to reconstruct my right eye socket. Once done they will look at creating a custom plate that will help hold my right eye in place and fix the double vision. Both of these need to go my way in order to get back to some sort of "normal" life.


There is one thing I have learned over this little life event that kind of concerns me. With all of the little (and not so little) medical wonder trips I have taken you would think that there would be a complete record of it somewhere. I mean when I showed up in the ICU they should have been able to punch my name and birthdate into a computer and get my whole medical life story. The good, the bad and the ugly. They should have been able to read about everything I have been through, but they can't. The only thing they have access to is what has been done in that hospital's system and since I was unconscious and my wife wasn't there yet, it was all that they had to go on and that scares me.
My wife and I spent so much time telling people that I could not have this medicine or that medicine. Spending time explaining why I had my stomach removed and my limitations around that. I had to explain to doctors that I had a CDH1 genetic mutation and what it was and what it could cause.
I get data ownership. I worked long enough in the data industry to understand wanting to keep control of the data you collect. However, this is my medical history and when I showed up in the emergency room there should be a way for them to have all of this information at their fingertips. They shouldn't have had to wait for my wife and I to fill them in.


I suspect I died in some cosmic shipwreck
With all hands spread all over the deck
What the heck
Then some kind of obscene and unscrupulous mind
Began to pick up what he could find
Added ice, shook me twice, rolled the dice
(School Boy Heart  Jimmy Buffett)

Two Years And Counting Through A Different Set Of Eyes

So today marks two years without my stomach. I had a couple of things I thought about writing about, but then changed my mind to give you a different perspective on my journey. I asked my wife, Edie, to give you a different viewpoint into the last two years. A different look at the same journey by those whose lives this also affected.

***********************************************

Hi everyone!

Roger has asked me on the eve of his two year anniversary of having his stomach removed to write from my point of view about the experience. So, here I am.

When we first found out that Roger had the CDH1 gene mutation, he was struggling with the decision of what to do.  He asked me after a couple days, “What would you do?”  I told him that I thought it was a ‘no brainier’, get the surgery done so that you’re here for your kids and grandkids. I’m not sure when he finally decided to go through with the operation or if what I said had any impact, but he did.

Everything seemed to be run of the mill, or as run of the mill as prepping for having your stomach removed can be. Then things turned south, it was about two days after the surgery…things were anything but run of the mill.  I never regretted my ‘no brainer’ comment so much…I felt like I should have just kept my mouth shut. Complication after complication, the first month we were in the hospital more than we were home.

His sister Melanie, was such an inspiration for him. I’m glad they stayed in such close contact, I however felt helpless, guilty and in the way.  There was nothing I could do to help him, I couldn’t fix him.  I am a wife and mother, I am supposed to fix things I am supposed to make everything better.  That’s my job, that’s what I do.  Reading his blogs was out of the question…I’ve only read maybe three of them.  I start crying every time.

Every time he gets sick I feel guilty, every time he dumps I feel guilty, every time he eats too much I feel like it’s my fault.  He is an adult…an amazing man…strong, gentle, loyal to a fault, and forgiving I hate to see him go through what he goes through.  I have to turn away so I don’t cry…

When you love someone as much as I love Roger, which is only a fraction of what he feels for me, seeing their pain…their struggle, you want to make it better, you want to make it go away.  Knowing that what I feel is only a portion of what he is going through…really doesn’t help.

I try to stand strong, I try to always be there for him.  It doesn’t ever feel like it’s enough.  I listen when he’s frustrated, I let him vent. I wish there was more, so much more I could do for him.

“Eat slower”, “not so much”, “maybe you’ve had enough”….the best and I’m sure the one he’s most sick of hearing “Chew, chew, chew Daddy man, chew, chew, chew.”  These are the things I tell when I don’t know what to say.

The experience did provide me with valuable information:   When someone you love is going to be in the hospital for an extended period have a lap blanket and pillow handy always.  No matter what the procedure or how short it’s going to be always pack snacks and some ‘light’ reading.  Pack chargers and keep your electronics close…you never know when you might be playing a round or fifteen of Alpha Betty.  Family updates are a must.  A one hour procedure will be at least two if not more.  Half hour procedures do not exist.  Cheesecake for breakfast is ok.  For me having a yoga mat wherever I went was huge...the patient waiting room with the ‘relaxation’ or ‘meditation’ station on was a must. 

That’s it.  I know Roger always uses a song lyric in his blogs…the song/phrase I cling to is ”Your life’s not falling apart it’s falling into place” Casting Crowns ‘Just be Held’

Greetings From Texas

Greetings from Austin Texas. I am here on a short business trip and thought I would do a quick update on my most recent test results.

If you remember, the lab test were to try to figure out why I could get so tired to fast. I could be doing fine and then all the sudden be so tired that I could not stay awake. It would happen while at home, in the morning, while driving, or sitting in meetings. It didn’t matter when or where, I would go from being fine to almost snoring in a matter of seconds. That does cause a problem while driving or at work. So I had a battery of test done to try to figure it out. 

All of my test result came back fine. All were low side, which I expected, but all were in the “normal” range. One test I was worried about was the one for diabetes it came back fine. They have decided to continue to test me twice a year for it since my father developed diabetes late in life.

So what about the problem I am have experienced with getting tired at the drop of a hat. Well that is where the poor decisions come into play. Being stomachless has it’s challenges. The first thing that they tell you is that you need to eat 5-6 small meals a day. In theory that may seem like an easy thing to do, but during the hustle and bustle of the day you forget.

My days go fast. I sometimes blink and four hours are gone. I could be running from meeting to meeting, from production, to estimating, to planning or to sales. Or even worse running from plant to plant which is an hour and a half away. Sometimes, many times, I don’t take the time to eat. I figured I would catch up later. Therein lies the problem.

Without a stomach I have no place to store extra food to draw on during the day. If I miss a meal, I just missed it. I can’t eat more later to make up for it or eat more to build my energy up. It is just gone. What the doctors feel is happening is that I am not taking in enough protein during the days leading up to the loss of energy episodes. It is my bodies way of reminding me that it needs more fuel to keep going and I should have eaten more the day before. It is just hard when the hustle and bustle of life steps in. Take this trip for instance. Yesterday was a full day of travel and meetings. I was able to eat twice. During my stomach days I would have been just fine. We will just have to see what the next day or so brings.

As much as a person without a stomach tries, they will no longer be “normal”. Normal folks can eat once, twice or three times a day and be just fine. I have to eat or think about eating constantly in order to function and there are many days I do not do that.

I just want to be normal again and I won’t be. I even pushed my doctor on that and asked what I could do to be more normal and her response was that I am not normal and will never again be normal.  “Normal people do not have their stomach removed” was her response.

So I have to accept that I will always be the exception to the “normal” rule. In other words, as my friends have been saying for year, “there is something off with Roger, we just can’t put our finger on it yet.”

Hey I think I found it.

Have a great weekend.

If you all want me to settle down,
Slow up and stop all my running 'round,
Do everything like you want me to,
There's one thing that I will say to you,
I'm not like everybody else,
I'm not like everybody else

(I’m not like everybody else   The Kinks)

Fear And Then Hope....

Since I am fast approaching two years without a stomach, I thought I would reflect on topic I hate. FEAR.

My greatest fear is that one of my children inherits this shitty gene. Even worse would be that my oldest daughter has the mutation and it was passed on to my grandson. I am barley out of the starting blocks and this genetic mutation could have moved on two generations. That is my definitation of fear, and I lay awake at nights thinking about it.

That said, there is HOPE.

Now I am not going to take any credit for what you are about to read. That comes from an amazing young lady going through the same thing my sister Mel and I are. Her name is Heather. She had her stomach removed last year due to the same genetic mutation. In her family's case the mutation turned into cancer that claimed her mother's life. Now Heather and her husband worry about the same thing as I do. They have a young daughter and struggle with the same question, WHAT IF?

Here is one of Heather's blog dated June 17th....

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This man right here is the man, the myth, the legend....he is nothing short of amazing and someone I really look up to.

Meet Dr. Parry Guilford.  He is the Director and Principal Investigator of the Centre for Translational Cancer Research in New Zealand.  HE is the man who discovered the CDH1 mutation and continues to research it.

I have been in contact with him through email and he is kind, caring, and quick to reply back with any questions I have had.

He just received a 5 year Grant from the New Zealand Health Research Council to continue strong research on the CDH1 mutation and HDGC.  He is EXTREMELY confident that by the time Paige is able to decide if she wants to test for the mutation (she has a 50% chance of the mutation), that she will NOT have to have a total gastrectomy.  He has spoken, before, about Chemoprevention Approaches...specifically one where 1 week every 5 years, these kiddos (grown at this point) would take a low toxicity chemoprevention medication to avoid HDGC.  They are "making great progress identifying weaknesses in the cells with CDH1 mutations and there are a few drugs which are looking promising (at least in cell culture experiments)."  It's unlikely that they will have something set in stone within the next 5-10ish years, but "hopefully we will have started trials by then."  "It will take quite a long time before we are confident that the chemoprevention drugs are working."

Hearing all of this great news from Dr. Parry Guilford makes me SO happy...my whole day, week, month, and year were MADE hearing that Paige and any of her cousins IF their parents test positive will NOT have to have a TG and there will be other options!! :) :) :)

Like I said, Dr. Parry Guilford is nothing short of amazing and I appreciate ALL he has done for myself, my family, and other CDH1 families.  I don't think he realizes how great he truly is, but I have tried to let him know exactly how I feel!!! <3

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I can't echo these feelings enough. As a parent, as a grandparent I can only hope that there are people out there like Dr. Guilford who care enough about this crappy gene I have to continue to fight for us, for our families.

It is people like Dr. Guilford who give me hope.

As for the amazing Ms. Heather. I have not yet had the pleasure of meeting her. We only know each other through our blogs, Facebook, emails and text. Once things slow down for both families we will get the chance to meet.

Thank you Heather.

If you would like to read more about Heather's story visit the No stomach for cancer website and go to the blogs link. You will find her there.

Almost Asleep At The Wheel..

A number of years ago a friend introduced me to a poem simply called "Don't Quit"

This image is the first verse of the poem that has stuck with me throughout the years and I have leaned on it many times during the trials of my CDH-1 journey.

So why bring it up now? Well this week I have found myself needing it once again.

Early last week I was driving to work when all of the sudden I started to crash. I went from being wide awake singing with the radio to not being able to keep my eyes open in a matter of seconds.

A couple of days later I was in a meeting when it happened again. Earlier this week on the way home it happened again and then once again on Wednesday as I worked at the store. I go from being full of energy doing something to no energy and fighting to stay awake.

So yesterday I saw my doctor so that we could talk about it. And soon the topic of conversation switched to testing me for diabetes. Not what I wanted to hear. It does make some sense due to the fact that my father developed diabetes late in his life. But still a kick in the gut.

All I could do was stare at my doctor and shake my head. In the back of my mind I was just saying to myself I am done. I want off this road trip. She then reminded me of something I have always known. There is no destination in this journey I am on. There is no end to this where I will be once again normal".  As she simply put it, "normal people do not have to have their stomachs removed".
My body is going to adjust and react differently as I get older just so it can compensate for my missing organ.

So I donated five to six more vials of blood and am waiting for the results. Besides the normal blood work, they will be checking my B12 levels and for diabetes. If my B12 levels are low I will have to begin giving myself injections every two weeks. And if I have diabetes, well let's just say that will bring a whole nother level of fun to this crazy mixed up life I live.

In the event that these test do not show anything out of the ordinary, I was given a referral to have a nutritional study done at the University of Minnesota. My doctor believes that the issue is most likely that something is missing from my diet and this is my body's way telling me. The study should be able to help identify it. This study request was sent to my insurance company to see if the cost of the study will be covered.

So I sit and wait. Are we having fun yet?

Instead of a song I am going to place the Don't Quit Poem here. There is no author attributed to it so I do not know who wrote it. It has helped me in the past and did again this week. I would also like to thank a good friend of mine for introducing me to it many years ago. Thanks Tim.

Don't Quit

When things go wrong, as they sometimes will, when the road you're trudging seems all uphill, when the funds are low and the debts are high, and you want to smile, but you have to sigh. When care is pressing you down a bit. Rest if you must, but don't you quit.

Life is queer with its twists and turns, as every one of us sometimes learns, and many a fellow turns about when he might have won had he stuck it out. Don't give up though the pace seems slow, you may succeed with another blow.

Often the goal is nearer than it seems to a faint and faltering man. often the struggler has given up when he might have captured the victor's cup, and he learned too late when the night came down, how close he was to the golden crown.

Success is failure turned inside out the silver tint in the clouds of doubt, and you never can tell how close you are, it might be near when it seems afar. So stick to the fight when you're hardest hit

It's when things seem worst that you must not quit.

Wait There Is Smoke!

Dateline May 3rd 2017

My appointment was at the University of Minnesota and I was there to get zapped by a laser.

The procedure was being conducted as a training class on a new piece of equipment which meant, as long as agreed to be their lab rat, the visit was free.  So I said...  Sure, what the heck.

Now I have mentioned before how much I dislike my scar. It didn't feel or look right and I wanted it fixed. So for the past few months I have been going to the U Of M to have steroid injections directly into the scar. The reason for this was to get the scar to flatten out. For the most part this worked. The injections weren't pleasant, but they did the job.

So this brings us to yesterday's laser treatment. They were supposed to be done to change the color of the scar. However when I arrived at the appointment things changed.

First thing I was told was that the laser treatment they were training on would not change the color, but instead would force the scar to reform properly this time. So I asked what was the difference between this and the steroid injections I just went through. His explanation was this time we are going to use the laser to due "controlled trauma" and then "vaporize" the scar. It sounded painful and I prepared for the worst. The good news was that there were going to use a numbing agent on the scar to help reduce the pain of being shot with the laser.

Now the numbing agent was just a numbing cream. The nurse was trying her best to follow the rules. She had a long swab and had it slathered with numbing agent. She was trying her best to smear in evenly across my scar. However a huge glop of the numbing agent dropped onto my hand. She then quit worrying about procedure and used her finger to smear the cream.

As for the glob on my hand? Well I decided to do what any guy would do and I wiped it on my pants. That was all well in good until a few seconds later when I rubbed my eye. Yep numbing agent in my eye. Don't try this at home folks I am a professional.

The procedure was to be done in the next room. My wife had to wait for me in the first room while the procedure was being done.

Once in the room, they made the decision to "train" on a second laser to help with the color of the scar. To do this one of the nurses had to go back into the room that my wife was in and get the second laser machine. When the nurse went into the room, grabbed the laser machine, she looked at my wife, smiled, and said "we are going to make him cry".  Really who says that?

So what was worst part of the session? Easy, that was watching them prep the machines. To make sure that lasers were aligned and working properly they tested them on tongue depressors. The first one they did was the one to change the color of the scar. I saw a flash of light and that was it. The second one was the one that needed to do the "controlled trauma" and then "vaporize" the scar. This one, when they hit the tongue depressor, produced a huge ball of smoke. All I could say was "Oh my god that is a lot of smoke". DR. Jue just smiled and responded, "yea, this one could hurt just a bit".  

The procedures went fine and I survived. The first laser they used was the one to try to change the color of the scar felt like a rubber band snap.  The second laser which was the one schedule to do all the damage, thanks to the numbing agent, only felt like small pin pricks. 

In fact the procedure went so well that they have agreed to do another 2-3 of these "training' sessions on me over the next couple of months for free.

We had so much fun, why not do it again!

What can this strange device be?
When I touch it, it gives forth a sound
It's got wires that vibrate and give music
What can this thing be that I found?

(2112    Rush)

An Anniverary Of Sorts.

So I was looking through some of my old post when I came across a blog I wrote just over a year ago..... And I missed an anniversary of sorts.

In this particular blog I mentioned how I had received the all clear on the tumor that they found in my esophagus. And with that came the news that I was all done with my trips down to the Mayo Clinic. I had ended one big part of this journey. A little over a year ago the hospitalization portion of this adventure stopped and it is kind of a big deal.

You see since then: 

I have not had to be admitted back into the hospital even once. 

I have not had to worry about how I was going to get to and from Rochester or who was going to drive me.

I have not had to worry about strictures.

I have not had to have dilations, or talk about getting another “damn stent”. 

I have not had a I.V. stuck in my arm.

I have not been put to sleep.

Now that is not to say that this year was filled with sunbeams and unicorns. Plenty of things have happened to take the place of hospital stays, as they say "life goes on". I also don't go a day without being reminded that I do not have a stomach. I have to think about it every time I eat, because if I don't then something gets stuck. Yes, even after all this time without a stomach, I still get food stuck on more occasions than I care to admit. When food gets stuck, then the area where the food is stuck swells and nothing goes down. Not even water. So once this happens there is nothing I can do about it except wait it out.

It is just my new normal but it is a new normal without a hospital stay.

On a side note, I have finished getting the steroid injections for my scar. All in all I had four sets of steroid injections. They were painful but they seem to have done the trick. My scar is not as pronounced as it once was.

The next step in this process happens on May 3rd when I go back to the U of M for a “training” session . They are going to be training on a new laser procedure which they hope will help reduce the redness of the scar tissue. Since it is a training session, there will be 25-30 people in the room when they do the procedure and I will be their test rat. Test Rat, another bucket list item checked off.

Funny story though. When the Dr. was “selling” me on this idea, he mentioned that it was totally safe and I didn’t need to worry about it. The most common side effect was an upset stomach. I just stared at him.
He went on to tell me that they could give me some medication before the procedure to lessen the impact to my stomach if I was concerned about it. Again I didn’t say anything I just looked at him and smiled. Really? 
It must have been five minutes later when he stopped mid-sentence and started to laugh. “telling a guy without a stomach that I could give him something to calm his stomach…. It’s gonna be a long day.” 
And I agreed to let this guy shoot me with a laser!  At least the procedure is free.

Hear the echoes and feel yourself starting to turn
Don't know why you should feel
That there's something to learn
It's just a game that you play

(Time Passages.  Al Stewart)

Week One Is In The Books

So I have successfully completed my first week at my new job. This week has been filled with onboarding meetings. They were stacked one after another. There was three onboarding lunches that I had to worry my way through, but with the exception of Tuesday all of them went just fine.

Did I tell them about my stomach, or lack there of? Yes, I did on the first day. There was talk about taking me to a popular pizza buffet, so I decided it was probably in my best interest to tell them. At first they had the normal questions I get asked like, "You can live without a stomach"? "Where does the food go"? But then the topics just switched and we were done the questions. In the end there is a lot of work to be done and they are glad that I am there, no stomach and all.

The hardest part of this week has been trying to keep my weight up. I have lost six pounds over the last eight days. I kind of figured I would loose some weight, but the six pounds is a little much. I am currently sitting around 183 pounds. I really don't want to get much lower. However with the meeting running back to back it left little time for me to keep up with my eating.

Next week should be better. There is still onboarding and a trip but things should slow down and I should be able to get into a rhythm of eating during the day.

But for this weekend I will relax.
What is on the docket for this weekend?
Well it is Easter.
What would you think of a gutless Easter Bunny.
I will post pictures. Have a great weekend.

She's somebody's hero
A hero to her baby with a skinned up knee
A little kiss is all she needs
The keeper of the cheerios
The voice that brings snow white to life
Bedtime stories every night
That smile lets her know
She somebody's hero
(Somebody's Hero  Jamie O'Neil)

For my Brother-In-Law Jim
Sending Our Love...

A New Beginning.....

So I have a question for you. 

When taking off a band aid, which do you prefer?

1. To slowly peel the band aid back, all the while trying not to pull out every hair that is stuck with it. The goal here is to remove the band aid. Leave the hair intact . All while causing the least amount of pain as possible.       OR...
2. You just rip it off and get it over with? Leave bare patch of skin where the hair used to reside. You might scream and holler like a two year old at first, but a couple seconds into it you are just fine.

Why would I ask this?

My days of unemployment are coming to an end. I have accepted an offer to return to work with a company out of Inver Grove Heights Minnesota. I will be starting work on April 10^th right after we return from a quick trip out to North Carolina to see Jenny, Sam and our Grandson Remi.

Now I have been out of work since January 1^st and this new position is an amazing opportunity, with an amazing company, that should reward and challenge me for years to come. 

However with the start of this new chapter in my life brings up the question of what to tell and when. To be specific how or when do I tell them that I am missing my stomach. I know that I do not have to tell them anything, but lets be honest, it is going to come out one way or another. Heck there is a real possibility that that I will not even make it out of day number one without it coming up. Since this is the first time I have started a new job since I had the surgery, what do I do? Do I just let it come up and work through it, or do I just rip off the band aid off, tell them and get it over with.  

Secretly I am dreading that first day, where the team says “let’s take the newbie to lunch.”

What if they decide to do that and take me to a buffet? Remember I am a horrible date at a buffet.

What if they decide to take me to a place like Subway or Davanni’s where my lunch options are really limited? I love both of these places, but have not eaten there since I had my stomach removed.

Believe it or not the best place for me to go to lunch at is a bar and I am not sure how that will look on day one. Bar appetizers are almost the perfect size, I can eat one third to one half depending on what it is. The rest can be boxed up and I will have lunch for the next couple of days. But going to a bar for lunch on your first day, may send the wrong signal to my new co-workers.

Still if I don’t tell them, and we go to lunch, the group will be staring at me wondering why the heck I am not eating. Do I not like the place that they chose? Do I not like the food? Do I not like to eat? Why is he so skinny? Is he sick? Should we have hired him in the first place? Now none of these question may come up on the first day, but they might. And if they do I am going to have to tell them. So what do I do. The first few days is when teams and executives want to meet the newbie and see what they are all about. It is my opportunity to give them a good first impression of who I am, and I really don't want the fact that I do not have a stomach to dampen the day. The fact that I do not have a stomach has nothing to do with who I am professionally, but it is still there. It is always there as shadow over everything I do. 

What to tell and when. This should be interesting to say the least.  I will let you know how it goes.. 

Maybe they will wait until day two and then it is no big deal!

And though it's always been with me
I must tear down the wall let it be
All I am, and all that I was ever meant to be, in harmony
Shining true and smiling back at all who wait to cross
There is no loss
(The Wall    Kansas)

In The End Was It Worth It?

Last week ended on a tough note and it brought back a question I have asked myself many times since that day I was told I had the CDH1 mutation.
Did I accomplish anything by having my stomach removed?

You see I spent Friday and Saturday saying good-bye to someone I have know for a number of years. We were not super close, however I got to know him as we played softball together on the church softball team.
He was the young speedy quick player on the team that could stretch a single into a double or a double into an in the park home run. I on the other hand was the not so speedy quick player on the team who could stretch a singe into a single and easily stretch a double into a single as well.

They say you have two times and dates stamped into your life. The day you are born and the day that you die. Everything else is up to you and the decisions you make. If you believe that then it really brings into question whether or not having my stomach removed changed anything. I still have that end date stamped into my "being". There is still an expiration date on my time here and I am not sure that by having my stomach removed changed that date at all.

He was 33 and in great shape. A son, a husband, a father and his life ended in a tragic car accident. He got up went to work and never came home. His time on this earth had ended. I have to believe that if he knew what was going to happen on that day that he would have done something. Changed his route. Changed the time that he left for work or even called in sick. If he had would that have change that days outcome? Would his end date moved?

That's what I did. I changed the path that I might have been on. I got the warning shot that my friend did not. Did I accomplish anything by having my stomach removed?
Did I move my end date? I don't know.
I know that I will not die of stomach cancer.
Still did I change that date?
We will just have to sit back and see how this life plays out.

Two, three count with nobody on
He hit a high fly into the stand
Rounding third he was headed for home
(Brown Eyed Handsome Man   Chuck Berry)

Rest in peace Matt.

Unemployed Week 7.... Stomachless in Greenland.

Remember in the movie The Princess Bride, Vezzini (Wallace Shawn) is verbally running down Fezzik (Andre the Giant) and ask him “do you want me to send you back to where you were? Unemployed, in Greenland!”  Well, that is kind of how I feel right now and since I am stomachless the title of this blog just fit. 

So has being stomachless affected me in my job search? For the most part no, but there was an “oh crap” moment. 

I am still unemployed. My days are spent researching companies. Writing cover letters and sending them out to perspective employers. Most of the time I get computer generated responses saying "thanks for stopping, thanks for shopping".  However once in a while I will get an email back from a real person. You need to have that email, from a real person, to set up a phone interview with a person to hopefully get in to have face to face with a person or two. 

So finally I had made it past a computer. I had made it through a couple of phone interviews and all the way to when they decided to bring me in for a series of  in person interviews. These interviews were going to take a good part of the day and they let me know that they were going to “bring in lunch”.

Here is where not having a stomach more than just kind of sucks.
They were going to bring in lunch. This should be interesting.
There is so much that I still can’t eat, so much that still gets stuck, so many foods that I just stay away from. I could only hope that whatever they decided to “bring in” was something I could eat while still answering questions during the interview.

For me, the key to eating is to eat slowly and make sure that I chew everything completely. When I have problems or something gets stuck it usually is because I wasn’t paying attention to how well I was eating. In most cases I was trying to talk and eat at the same time. Which is exactly what I was going to be doing over this lunch.
Well luckily for me “bringing in lunch” meant going down to their cafeteria and ordering something. There was plenty to chose from so I decided to play it safe with a bowl of soup. This time it turned out fine. I ended up not getting the job, but I did make it through lunch. What happens the next time when the interview is scheduled over lunch and they really do bring something in?
What happens then?  

There is a spot on all online applications now where you have the option to disclose if you have a disability. There are so many choices to select from major depression, missing an arm, or missing a limb. There isn’t one for missing your stomach, or any other major organ that might have been removed for one reason or another.
So what will happen when I do get a new job. Will there be any buyers remorse once they find out about my missing stomach. I hope not, but that day should be interesting to say the least.

Tell me did the wind sweep you off your feet
Did you finally get the chance to dance along the light of day
And head back to the milky way
And tell me, did Venus blow your mind

(Drops of Jupiter  Train)

So what's it like?

Tonight for some odd reason, I thought it would be best to see how much beer I could drink in one session.

4 beers.

That is all I could manage.

4 16oz cans of Lift Bridge Hop dish IPA.

4 beers, 16oz cans at 7.5 ABV. That was it.

When you drink without a stomach, you get the same feeling as if you had a stomach, just a bit faster.

So tonight, I will say "Good Night" knowing that there is one thing that I can not do as well without a stomach, and that is having a few night caps.

Good night my friends.

Roger.