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)

Wrapping Up A Vacation

It's late afternoon here on the coast and we are putting our finishing touches on our beach vacation of 2016. Tomorrow morning we all start our journey home.

My goals for this vacation were simple. Sit back relax and heal some more. Yea, I threw in some other odds and ends but they were just added bonuses. I would like to think that I accomplished all of my goals, but only time will tell.

Tonight we head out for a nice dinner together and then tomorrow morning we need to be out of the beach house by 10am.
There are always tears, but it gets followed by the excitement knowing that this group in one form or another has been making this trip every other year for the past 18 years. The faces may change but the journey remains the same.

Two years from now, when we get back here, a new generation of our family will be experiencing this getaway for the first time...

Now that is something to look forward too. 

In my mind I'm going to Carolina. 

Can't you see the sunshine, can't you just feel the moonshine.

Ain't it just like a like a friend of mine to hit me from behind? 

Yes, I'm going to Carolina in my mind.

(Carolina In My Mind. James Taylor)

Good Morning From The Beach

We all made it safe and sound.
Today is our second full day here and it's been amazing. We have had days filled with sunshine, walks on the beach, smiles and the ocean. At night we play games, listen to music and fill the house with laughter. Just what the doctor ordered.
Our first night we were even treated to a thunderstorm that rolled up the coast and shook the house.
Last night my son and I went for a stroll on the beach. OK, I went for the stroll, he was Pokémon(?) hunting. I guess we caught three and we didn't even bring bait.

Speaking of fishing...

I met this little guy while walking on the beach yesterday. He lives in Tennessee and he is 4 years old. This was his first time to the ocean and his first time fishing. His older brother had already caught a fish so he was sad that no fish had taken his line. Yet, he knew one would because now it was "his turn". Sure enough, while I was there he had hooked on to his first ever fish. So when I took this picture, the battle had begun.
The fish he caught was no more than four inches long and looked more like a mouse that it did a fish. But it didn't matter to him. He had caught his fish. He had even struggled to bring it in on a full size fishing rod because that was how his brother caught his. He helped to unhook the fish and he released it back into the water.
Then he yelled, he cheered and danced in the water.

Depression is something that I have struggled with since the operation. You have your plan and you do your best to stick to the plan. All the while knowing that life doesn't care about your plans and the wheels can come off your plan at any moment. My plan has been derailed so many times. You just adjust the plan and start over. It just sucks.
Even here at the beach it creeps back in. It is just always there.
My doctors check on it and we talk about it every time I see them. They have not put me on anything for it as of yet but we are talking about it.
Yet after watching that little guy yesterday, maybe I am going about this all wrong and just maybe I need to take a page out of his book.

Maybe I just need to yell, cheer and dance a little bit in the ocean.

So let's sink another drink
'cause it'll give me time to think
If I had the chance, I'd ask the world to dance
And I'll be dancing with myself
(Dancing With Myself  Billy Idol)

And We're Off.... Sort of..

At 5:30 this morning vacation started for real. The crew got shaken, awakened and rousted. The final contents were stowed in the rented minivan. The remaining space in the van was then filled with excited, yet sleepy passengers. Then I waved goodbye as they started their journey eastward and went back to bed.

Wait! You thought I was going on this vacation too?
I am... I'm just flying!

This is actually day three of my vacation. The first two were filled with trying to get things done around the house. My car needed repair work done. The lawnmower had died and needed to be fixed The lawn needed mowing. One of the mopeds needs a new tire. Just the odds and ends of things that needed to get done. And as I would get things accomplished I would reward myself with a beer. People who know me shouldn't be surprised by that last comment.

Now I did bike eight miles yesterday. Not really by choice though. As I mentioned my car needed to be repaired and the shop that did it was eight miles away. Since I was the only one off of work yesterday there was going to be no one around to give me a lift when I needed to go get my car. So I told my wife that I was going to ride my bike to get it. She sort of laughed at me. I reminded her that I did that many times as a youth, to which she reminded me that I was no longer a youth. So I did it.
It took a little over an hour to get there and I only had to push my bike up a couple of "steep" hills. In my defense when I arrived at repair shop and the owner saw that I had biked, he asked where I had biked from. I told him Hanover, to which he replied "Oh my god that is up hill all the way". He didn't sound like he was being sarcastic and I hadn't paid for my repair yet, so I think he was serious.

Today there are few last minute things to pack that I will need to carry on the plane with me. A few minor things to finish up here and then it is off to the airport for my flight at the buttcrack of early tomorrow. Next stop, the beach.

I have to admit though, this morning, as I was packing the final contents into the van. I was struck by a sense of loss that I was not making the journey with them. I would miss this part of the adventure. Then I saw how stuffed the boys were in the back seat and though "Nope, I am good".

I guess I just don't have the stomach for it anymore.... :-)

So much as come before those battles lost and won
This life is shining more forever in the sun
Now let us check our heads and let us check the surf
Staying high and dry's more trouble that it's worth
In the sun..
(Road Trippin'    Red Hot Chili Peppers)

Setting My Sails Towards Vacation

In a few weeks we will heading back to the coast of North Carolina.

We have rented a beach house on Topsail Island. This is a trip that our family takes every couple of years and the coast of North Carolina is the place where we go to unwind, regroup, and reconnect.

My goals for this vacation are pretty simple.

1. Continue to heal.
I could say that the healing portion of this journey has gone smoothly, but that's not the case. I am still getting food stuck, throwing up and experiencing dumping. I want some time where I can just sit and be. I don't want any drama. I don't want any doctors poking or prodding me. I just want a place where I can relax and let whatever still needs to heal, heal.

2. Read a book or two by authors I have never heard of.
Not just any book. I love a good mystery. So my goal is to find a couple of local authors who write mysteries set along the North Carolina coast. If the books are set in Topsail even better, but I will take anything written about the coast.

3. Listen to music.
If you read this blog, you know that I enjoy listening to music. My iPod has everything from Disney show tunes to Frank Sinatra, to CCR to Dave Mathews and Disturbed. What I listen to depends on my mood and what is going on in my life. So for this vacation my iPod has been loaded up with over 6,000 tunes to carry me through the week. Music wise I think I am good.

4. Find a new beer or two (or more)
Working at the liquor store gives me the opportunity to try and experience new beers. The only challenge is that for the store to have them they need to be distributed for sale into our area. That eliminates a lot of beers, from all over the country, that are not widely distributed. So my goal is to search out local beers that I can only find in North Carolina. No list, No searching for any specific beer. Just walk in and say "what do you have that's local" and give it a try. Life is too short not to try something new.

5. Enjoy the family and friends.
With everything that has happened, our family dynamic has changed and continues to change. Heck, we are going to add a grandchild next year. God, I love saying that. However, who knows how many years we are going to be able to keep making this trip. Time changes all, and this year our family is different than the family that was there two years ago. Two years from now it will be different yet again.

So we will enjoy the beach, enjoy the ocean and enjoy each other's company.
The beach is callin' and I am heading out...

Where it all ends I can't fathom, my friends.
If I knew, I might toss out my anchor.
So I'll cruise along always searchin' for songs,
Not a lawyer, a thief or a banker.
(Son of A Son Of A Sailor  Jimmy Buffett)

Always The Last To Know...

Father's Day....  2016

Everything I went through. The surgery. The hospital stays. The complications and strictures. The dilation then the stent was done so that life could happen. It was done so that I could live and experience life to it's fullest. 

Tonight a new milestone. 

I am going to be a Grandpa. 

It seems everyone knew about it but me. We had Maddie's graduation party yesterday and I am shocked at the number of people who knew and no one said anything. At least no one said anything to me...

The baby is due on January 1st of 2017. 

You take risk. You make plans. You hope and pray that things work out. 

And today they did.

Well I just heard the news today
It seems my life is going to change
I close my eyes, begin to pray
Then tears of joy stream down my face

(With Arms Wide Open   Creed)

Does That Come With A Toy?

I mentioned in my last post that I had recently gone fishing in Canada. One night while there we went to a small restaurant for dinner. Now it has been 10 months since I had my stomach removed and you would think that I would have this whole eating thing under control, but you would be wrong.

The restaurant we stopped at was a small family diner attached to a motel. We were the only ones in the dining room and we had a very attentive waitress. I ordered what I thought was a safe meal, chicken tenders. The meal was six fairly large chicken portions. They were cooked a little on the over done side, but with enough BBQ sauce I figured I would be just fine. Well on the second or third bite a piece got stuck. So much for "safe".

Food getting stuck happens every so often and I have learned how to deal with the situation. Most of the time these events are self inflicted. In this case I was chatting with my friends, not paying attention to how well I was chewing my food, and a big chunk got stuck. My fault all the way around. Once food gets stuck, it has to get unstuck. It is that simple. Nothing else can go down until whatever is stuck moves. Once you dislodge the food you are are kind of sore and on this particular evening I was pretty much done eating.

Well, about that time the waitress came back asking us how our meals were. She saw my plate of food and said to me "Well, your's must not have been all that good". I assured her that it was fine and I was just full. You could tell from the look on her face that she didn't believe me but she didn't say anything.

Later she returned and asked me if I needed a to go box which I politely declined. Wrong decision on my part. She immediately took that comment as if I had just lied to her about the quality of the food. She needed to know why I didn't like my meal and was not taking no or "it was fine" for an answer.

I have mentioned before that without a stomach I need to eat 5-6 times a day. Before the surgery I could eat maybe once or twice a day and that was all I needed. So this is a big change for me. Before I would wait to eat until I got hungry and then go scrounge something to eat. Once I was full I could continue on with my normal life. Now I don't get hungry. There is nothing to tell me to eat.

Our youngest daughter graduates from high school tomorrow. With the ceremony and then a full schedule of graduation parties to attend, I have this funny feeling that there will be more days upcoming where my eating mirrors that of my life before the surgery.
My plan is to keep reminding myself to eat but that is easier said than done. For instance, last Sunday I was staining our deck in preparation for our daughters graduation party. I worked on the deck the entire day and it wasn't until after 6 pm that I came to the realization that I had only had a half of bagel to eat all day.

You don't get hungry, you don't feel full. You feel "normal". Then your body, or in this case, someone else reminds you that you are far from normal.

Back in Canada I proceeded to explain to the waitress what had happened and that I had recently had my stomach removed. Due to this I couldn't eat much and that there was nothing wrong with her food. Also, since we were from the states we had no way to keep the leftovers safe for later. All was fine. I just wasn't going to eat anymore.

Her answer to the entire ordeal was "you come in again for your next meal and I will let you order off the kiddie menu..."

Really?

Though the dawn may be coming soon

There still may be some time

Fly me away to the bright side of the moon

And meet me on the other side

(Dream Weaver  Gary Wright)