Sleep.

It has been a while since I posted anything, so I thought I would give a quick update.

A few weeks ago I had my 14 month checkup. These checkup are always the same. They involve being poked, prodded and drained of a few vials of blood. For the most part all of the blood work tests came back fine. They were on the low end of the acceptable range, but in the acceptable range none the less.  

As always, once the test are run, the conversation goes to how I am doing. They want to know how I am adjusting to my new life without a stomach, and for the most part I am doing well.  The one exception to this would be sleep. Since the surgery getting a full night’s sleep has been a challenge. Some nights I might get a few hours at a time, but there have been many nights when the hours just seem to slowly slip by. 

This all started while I was in the Mayo Clinic. It sometimes feels like my insides are shifting from one side of my body to the other in the space where my stomach used to reside. The doctors assure me that it is not the case, but that is what it sometimes feels like. 

When I sleep I need to make sure that my head remains above my body. Your stomach has a flap that keeps stomach acid and bile from coming back up your esophagus. Well they removed mine when they removed my stomach, so it limits how I can sleep.  Again, this was nothing new I have been struggling with this for the past year.

We tried everything. Over the counter drugs, Melatonin and natural sleep aids. Nothing worked. We even went so far as to go out and buy a new mattress. Nothing worked. 

While at the Mayo Clinic had put me on Ambien and it seemed to be doing its job. I may not sleep all night, but it wouldn’t take long for me to fall back asleep. The problem…  Ambien is a federally regulated drug and getting a refill takes an something just short of a letter from the FDA. 

I was given one refill and then nothing. 

So now they have put me on a second antidepressant.  Yea, I wrote second.  I take one in the morning to help “keep me balanced” and I take two of the other antidepressants to help me sleep. We have agreed to give it two months and see how I do. I will tell you that I am sleeping better. I may wake up, but I can go back to sleep. I have had no sleepless nights. 

It is just antidepressants have side effects.  Even taking one has side effects, but I am now taking two different ones.

We will see how this story unfolds…

Golden slumbers fill your eyes

Smiles awake you when you rise

Sleep, pretty darling, do not cry

And I will sing a lullaby

(Golden Slumber  The Beatles)

Give It A Year They Said.. Give It A Year..

After my surgery last year it was recommended that I give my body a year or so to heal before I started doing anything "strenuous" again. Yesterday I found out why.

I played 18 holes of golf for the first time since I had my stomach removed.

The original agreement with the doctors was that I would wait to play golf until next summer. I am not sure if this was to protect me or to give the local fairways I had been on a chance to grow back. I don't know, six of one, half dozen of the other I guess. Still I checked in with my doctor on Friday and got the OK to get back out there and swing away.

One thing that they did tell me was that I might be surprised to find out how much a round of golf would take out of me. What? It was a round of golf. It was a best ball tournament for heavens sake and we were riding in a cart. How much energy could it take?
I was about to find out.

The first five or six holes went just fine. I didn't play all that well, but my energy level was up and I felt good. We laughed and made jokes as we made our way around the course.

About the 6th hole or so, I started noticing that I was getting tired. The clubs seemed heavier and they took a lot more energy to swing. I figured that I just needed some food so I snacked up. I got some chips, some water and figured it would tied me over until the end of the round when we would eat.
I got this... Or so I thought..

By the time we started staring down the last four or five fairways, I was wiped. I had to pull myself out of the golf cart. It took all of the energy I had to swing even my lightest clubs. I mean we were ridding in golf carts and it felt as if I had just walked the entire course. My energy was just gone.

I like to stay active. I am just not sure how you stay active when you have to continually worry about stuffing your face with food just so you do not run out of gas.

Anyway, they say that a bad day golfing is better than a good day working and it does still hold true for me. As tired as I was by the end of the round I still had an amazing time. The best part of the day was spending some time with a lifelong friend that I do not get to see nearly often enough. I just pray that we do not wait another two years to see each other again.

Seventeen has turned thirty-five
I'm surprised that we're still livin'
If we've done any wrong I hope that we're forgiven
Got a few kids of my own
And some days I still don't know what to do
(Cherry Bomb  John Mellencamp)

The Ties That Bind

"As long as the ties that bind us together are stronger than those that would tear us apart, all will be well."  (Basic Text of the Fellowship of Narcotics Anonymous pg.57)

This past Saturday was our 28^th wedding anniversary. What a difference a year makes. This year, I worked at the store in the morning which left us the evening to relax and enjoy each other’s company. We had an early dinner at the River Inn, won some money at pull tabs (then gave it back), and then buzzed the town on our mopeds. We finished off the evening with a cocktail, some popcorn, and rented the movie “The Jungle Book”. All in all a good night.

Later today we will finish up our anniversary weekend with all the kids and an evening of laughter and games. Jenny and Sam are in town for the weekend which makes it even more special. This will probably be the last time we get to see them before the baby is born.

Last year, over our anniversary, I was just starting my weekly runs back and forth to the Mayo Clinic. They were beginning to suspect that a stricture had formed, but had not decided on starting dilations yet. In fact for our anniversary I was lucky that I wasn't spending additional time in the hospital, or that I was not enjoying my dinner through a Pic line. It was just the beginning of a really tough stretch in our lives. We were looking at traveling down a long tunnel of worry and not knowing, but we made it though. It just took some time.  

You lose count of anniversaries so I wanted to write about this one. I mean we have spent our anniversary together and separated. Our anniversary has arrived when we were sick or when we had sick kids to take care of. We have spent them in mourning over loved ones lost or with family and friends celebrating life. We even spent one, six years ago, in the intensive care unit at the University of Minnesota after I started hemorrhaging at dinner. So this year having one that was low key and relaxing was nice.  

The longer you stay together the more that can and will happen. The more that happens the stronger the ties that bind you together become. Just think, next year we should be celebrating our first anniversary as Grandparents. It's gonna be a good year..

Happy Anniversary Edie.

You should know, Everywhere I go
Always on my mind,
You're in my heart, In my soul

(You’re The Inspiration  Chicago) 

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)