A Quick post....

We got some horrible news yesterday and I need to figure out a way to move past it, so I thought I would share some of it.

Over the past few years we have had the privilege of being able to help some young people out when, for one reason or another, they needed a place to stay. Sometimes things at home were tough or complicated, or sometimes they just needed a break. And since we have the room , when we can, we help.

I would love to say that all of these guest stays ended on positive notes, but that has not always been the case. Most of the times if an issue cropped up, it came from someone not wanting to follow the rules that were set down when they moved in.

The rules are pretty simple and the few major ones were:

• While in school they could stay with us as long as they want. But their parents needed to know and agree to let them them stay with us.
• The school needed to know where they were and they needed to go to school.
• Boyfriends were welcome but curfew is 11:00 PM and then boyfriends needed to go home.
• No alcohol.
• No drugs.     

There are other small requirements(like chores), but for the most part those were the major rules. If and when there was an problem with a guest, usually one of these rules were the issue.

Well earlier this week there was a horrible incident in one of the neighboring towns involving one of the young ladies that lived with us awhile back. Out of respect for all of the families involved I will not being going into details, however this young lady's life will be forever changed because of a poor decision that she and a friend made. Life doesn't have an undo button when things go bad.

This wanting to help comes from my parents. While I was growing up we would have extra people live with us all the time. We didn't have a lot of money but it didn't matter. I can remember on more than one occasion when an entire family would move in with us. If people need help, and you can help them, you do it. End of story.

So I was taught from a young age that if people need help and you can help, you do it. It is just one of the many teachings that were passed down from my parents that I am proud to carry on.
It is just hard because these young people become part of your family and you want them to succeed and flourish just like you do your own children. You want to celebrate their victories and accomplishments and want to help protect them from harm. All the while knowing that their not yours and all you can do is pray.

Sometimes that is not enough....

I can't tell you how much this hurts right now.

                                                                 Happier times.

Trouble.. "Warning Warning Will Rogers!"

Should have saw this one coming.
My wife and I went out for dinner at a new restaurant yesterday.
The restaurant is called the White Horse and it is located in St. Cloud Minnesota. The menu is packed with new and interesting items and I couldn't resist.

I settled on a dish off of their "Around The Globe" menu. It consisted of of lamb tips in a house massala, clove, tomato, yogurt and cream sauce. It should have screamed at me "too rich for you", but it didn't.

So I ate it. Or I tried to anyway.
I started getting sick before the bill arrived. Thank god it was early in the day and there wasn't a lot of customers in the restaurant.

It did taste amazing though. Maybe next time..

And there will be a next time. There always is..

No risk, no excitement
Hey lets get it while we can
'cause
Some mistakes are too much fun
To only make once
(Some Mistakes   Brad Paisley)

A Favor....

At some point in time tomorrow this little stomachless community I reside in grows by one. 

I do not have this persons permission to say anything else so I wont. I just know that when I was going through all of my trials of recovery this person would send me notes just to keep my spirits up. 

Now it is my turn to return the favor.

This person is in good hands down at Mayo, but it is still a major surgery. The whole family can use all of the prayers, good thoughts and warm and fuzzies we can throw in their direction.  

So please keep them in your thoughts tomorrow.  Thank you.

To my friend down at Mayo. You are in great hands. Dr. K is one of the finest in the world and you will be up on the road to recovery in no time. 

Still tomorrow my thoughts and prayers will be with you.

Roger

So dream your dreams and live your life
Knowing there's more than to merely survive
Don't give up, don't give in
Fight through the rain and lean into the wind
'Til you come to the edge of all that you know
Run right through the dark knowing you're not alone
(When The Mountains Fall   Mark Schultz)

My Life Without A Stomach... Year 1

The doctors told me to give it a year.
They told me that it would take a year to feel “whole”. 

Well as of today it has been one year since I had my stomach removed. 

So, how do I feel?  
Do I feel “whole”?

To be honest, I don’t know. I think so..

I had my stomach removed on August 4^th 2015 to ward off cancer. I carry a mutated version of the CDH1 gene. During follow up visits to the Mayo Clinic it was discovered that I also had a condition known as Barrett's Esophagus. Combined together my chances of getting a rare form of gastric cancer was placed at over 90%.  My options were limited and I decided not to take the risk. So I had my stomach completely removed. When my test results came back they indicated that there was no cancer in my stomach or esophagus.  

The doctors felt that I got lucky. How much longer my luck would have held out is anyone’s guess.

When all is said and done, life without a stomach is not that big of a change. It is more of just an adjustment to the way that I live my life than it is a change to my way of life if that make sense.

I feel the same as I did before. It doesn’t feel like I am missing my stomach. I feel like it is still in there. I just know that it is not. I can still eat food and drink beer just as I could before the surgery. I just need to slow down, eat/drink more often, but in smaller quantities. That's probably not a bad thing.

Over the past year I have had set backs. Strictures were a constant reminder that I was no longer normal and things were different now. There was dilation after dilation. Then came "that damn stent". The good news is that I have not had a stricture since the stent came out. 

I am at the point where I can pretty much eat what I want. There are things that are still off the menu though. It may sound strange to some, but I miss having a salad. I have tried to have them a couple of times and lettuce is the problem. It gets stuck, which never ends well.  Broccoli slaw is another problem. Our family uses broccoli slaw in some of our favorite menu items. For instance I use it when I make my BBQ chicken wraps and a similar style pizza. Since the surgery the rest of the family still gets to enjoy them, but I have to stay away. I also miss eating raw carrots. I use to grab a mitt full of carrots and munch away. Now I can eat them cooked, but I get in all sorts of trouble if I try to eat them raw.

Food gets stuck all the time. It is just something you learn to live with. I can go days or weeks without having an issue and then all the sudden it seems like I am throwing up all the time. In most cases, these are self-inflicted. I am eating too quickly, or I am too busy talking and not paying attention to how well I am chewing my food. Eating is no longer just second nature, I have to remember to think about eating while I eat or I am going to have a problem.

I miss deserts. I can have small amounts of ice cream. I sneak a piece of candy here or there. The challenge there is that I have no will power and a sneak here or there sometimes leads to more sneaks and then the wheels come off my day for a bit. Let me be clear. Dumping syndrome is a bitch no matter when or where it happens.

I struggle to stay hydrated. Drinking enough water is always a problem. You know on those hot days when you are thirsty and want to take a big gulp or guzzle down some ice cold water. Or better yet, you want to take that big pull off of an ice cold beer. Yeah, I can’t do that anymore. I am not a big “sipper”.  If I want to drink something, I want to take a nice sized gulp. Now every time I try to do that, it gets stuck, and comes back up as fast as it went down. I know what you are thinking “How can water get stuck?” Trust me it can get stuck and it does. 

Before the surgery I weighed around 250 pounds. Now I weigh 186 pounds. I might swing a pound here or there, but I have maintained this weight for a number of months so it is safe to say that this is my new weight. I like the way that I look. The exception to that is how I look in a muscle shirt. Recently I needed something to cover my scar while in the ocean over vacation. I tried on a couple of muscle shirts and yeah, no one needed to see that. Trust me not a good look. T-shirts work, I will stick with t-shirts.

I do not like my scar. It’s not healing correctly. It still hurts and is really ugly. The University of Minnesota wants to start steroid injections into the area so I think that I am going to give that a try.

So after a year what do I Know..
I know that I am a CDH1 genetic mutation carrier and I always will be. There is no cure for this and there is no way to fix it. So this label will be with me for the rest of my life. If research links this specific mutation to anything else then I will be at risk.

They did not find cancer so I am not a cancer survivor. I just had to make a decision. Sometimes I find myself wondering what would have happened if I hadn’t made the decision I did. Would they have ever found cancer? If so when would they have found it? Would it have been over this past year, or five years from now. The doctors feel certain that they would have eventually found it, but when? I don’t regret my decision, but I do think about the “what if” more than I probably should.

I wonder how my children’s lives will unfold. They have a 50/50 chance of inheriting the mutated gene from me. They have all made the decision not to let this “chance” spoil them out of any experience that life has planned for them. They are all strapped in for the long hall and ready to battle, fight, rejoice and celebrate everything life has planned. My god, my daughter and her husband are going to have a baby in January. If anything says “I got this”, it’s having a baby. All three of the kids have the same “I Got this” attitude. I can’t tell you how proud I am of all of them.

Still the father in me keeps reading and keeps researching in hopes that, if they ever need to make this decision, they will have options that I didn’t have a year ago. Advancements in treatments are being made all the time and my prayer is that hopefully, soon, they will be able to break the link between this mutation and cancer.  Wouldn’t that be nice.

It’s been a long year…

It's times like these you learn to live again

It's times like these you give and give again

It's times like these you learn to love again

It's times like these time and time again

(Times Like These  Foo Fighters)