Wednesday, March 21, 2018

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

So at the end of my last blog, I made the statement that:
“Then once that is completed they can go in with a screwdriver and adjust the alignment screws on the sides like we did with the automobile headlamps.”
Remember that?
I thought it was a funny line so I added it.
It was just supposed to be a funny thought.

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

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

That is where the conversation got a little wonky.
Once I heal, a second surgery will take place. A different doctor will handle the procedure to do all the aligning. They are going to go in and make “adjustments” to the muscles surrounding the eye to get it as lined up as possible. They will then close me up and move me to recovery.
Once in recovery they will make the final “adjustments” to get the eyes lined up once again for single vision.
Adjustments in recovery you ask?

Remember the comment about going in and adjusting the headlights using the screws?
The statement I thought was funny.
It was just supposed to be funny.
Yeah, that is what they are going to do, sort of.

I will not have screws, but they are going to attach surgical thread or something to the muscles surrounding the eye.
Once in recovery they will then pull on each thread/string/wire/clothes hanger/whatever separately until they get the eye in a place where it lines up with the other one and I have single vision again.
Sounds painful.
My hope is for good drugs.

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

Wednesday, March 7, 2018

Chasing Squirrels... A Medical Update

Now I might be aging myself a little bit here, but remember the round/square headlights on the older cars?
For one reason or another one would get out of whack and it wouldn’t look down the road quite right.
My dad would always ask me if I was chasing squirrels with that headlight because it was always running pretty high up in the trees. It was his subtle way of telling me to fix it.

So I kind of have a headlight/eye out of alignment. It is not up chasing squirrels in a tree out of whack, but out enough that I cannot use the eye. I have to wear an eye patch pretty much 24/7.
I have had five surgeries on that eye and have been working on setting up the sixth. Now I haven’t posted for a while and thought this might be a good time to give you an update on where my recovery is at.

Now this particular story starts with a comment about someone else.
Recently I was meeting with the surgeon who is, scratch that, was going to do the next round of surgery. The surgeon was saying all the right things and she was confident in the procedure, but then she made this comment;
“I was just talking with the lady in the next room and I was able to tell her that I was 90% sure that I could fix her problem. I am nowhere near that with you. My goal is to see if we can create a sweet spot in your vision field that you can function with.”
I think I will be getting another opinion. Thank you!

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

So I met with The DR from the U last Thursday and had the CT scan done on Friday. On this past Monday I met with the surgeon who did the last round of surgery at North Memorial and he concurred…… 
With the U of M….
At least kind of...
Like at the U Of M, he doesn’t feel that the muscle surgery will work because my eye are too far off kilter. His recommendation though was different. He wants to go in and put a wedge in to try to get my eye to align. A wedge?

This will give you an idea as to how tired I am of all of this, this is what popped into my mind. I picture one of those wooden leveling wedges that you use on door and window frames and the DR. with a hammer just tapping it until he thinks it’s level and then snapping off the excess.
Then once that is completed they can go in with a screwdriver and adjust the alignment screws on the sides like we did with the automobile headlamps.
It could work.
And the squirrels could rest.

I've always listened to your point of view
My ways I've tried to mend
And I've always been a patient man
But my patience has reached its end
(Blue Morning Blue Day  Foreigner)

Wednesday, February 21, 2018

Not A Long Post.

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

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

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

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

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

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

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

Saturday, December 30, 2017


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.


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)

Sunday, December 24, 2017

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)

Tuesday, November 14, 2017


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)

Friday, November 3, 2017


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)