The Mayo Trifecta

I met with the staff down at the Mayo clinic yesterday and here is a quick update.

Update one:

I have been experiencing dumping syndrome almost daily now for the last week or so. I thought maybe I had caught a bug or that something but in the end it turned out that something I was eating was causing me to dump. It is just that I hurt and cramp a lot especially right after eating.
The team at the Mayo Clinic seems to think that it has to do with my diet. When it comes to eating, I have not been a horribly adventurous fellow since my surgery. If I find something that agrees with me I stick with it.  Now they want me to back off my diet until we can figure out what is causing it. They recommended soup. I reminded them that Thanksgiving was right around the corner and they still recommended soup. I let them know that soup was probably not going to be on the menu.

On a side note, I did ask them how I would know if I caught the stomach flu when I do not have a stomach and they assured me I would know. 

Update two:
Issue number two. My incision. There is something not quite right with it. I have now seen three different doctors on it and all three have called it something different. In the end it hurts, an looks very angry. They do not believe that it is infected, but it is a very deep dark red very sensitive to the touch.
The University of Minnesota wants to start steroid treatments. Wait, I know what you are thinking, I went to the Mayo Clinic, how did the U OF M get involved.  Well my normal physician is part of the new U of M system. They would like to inject the surgical site with steroids in a effort to to get it to calm down. The staff at the Mayo is reviewing the recommendation and will let me know if they agree with the recommendation.

Update three:
They also believe that I have another stricture forming. So I need to have another endoscopy and esophageal dilation. As you can imagine the happy, positive Roger left the room about then and they were left grumpy Roger. The first appointment that they can do it on is December 17^th. Enough said on that.
  

I want to heal and get back my own life. The staff at the Mayo went out of their way to remind me that it has just been over 90 days since my surgery and it could take a few years for me to completely heal.  I really did not need to hear that. 

But things come in 3's!

I don't know, but I've been told
If you keep on dancing you'll never grow old
(Dance, Dance, Dance  Steve Miller Band)

Regret

It has been a little over 90 days since I had the surgery to remove my stomach and I seem to holding my own. There are still days when food gets stuck but for the most part the dilation seems to be working (knocking on wood).  My next appointment at the Mayo isn’t for another week or so and hopefully things will remain quiet until then.  My weight has stabilized and I have been sitting at 195 for over a month now.

I had a couple of questions asked of me recently that I thought I would share.

First question, "How does it feel to not have a stomach?"  

Well, I can tell you that once your stomach is out, you feel the same as when it was in. There is no hollow feeling or empty space where it used to be that I have this yearning to fill. It doesn’t seem like I am missing anything. I never really get hungry and I never really feel full. If we are working outside I could go all day without eating and not miss it. I just get tired and run out of energy. I have learned that if I eat too much, or to quickly, then I hurt and my body sends the food back out the way it came. So if I eat and nothing gets stuck, then it feels the same as when I had a stomach. If food gets stuck then all bets are off.

When I had the stricture and would drink something, whatever I drank would stop about mid-chest. I would experience pain across my chest similar to getting gas stuck. It would be there for a few seconds and then you would feel it “leak” through.  Food would just sit there until it passed or came back up. There again would be pressure and pain until the food decided which way it was going, but then I would be fine. Since my dilation procedure most things (food and beverage) pass through so eating has become less of an adventure which is nice.

I am noisy. I gurgle and percolate a lot. Not much quiet time left, cause somewhere, something inside of me is making a ruckus. To the point that even the dogs don’t want to lay too close. The noises I make scare them. Jake, our little one, once jumped up when I gurgled and went and started barking at the door. I am not sure who he thought was coming in.  He is an amazing little dog, but not the brightest bulb on the tree.

Second question, “Do I regret the decision to remove my stomach?”
It is just with the stricture, the additional hospital stay, and other complications I endured, do I wish I had not had the surgery?  The short answer to that question is “no”. I mean there are days when you are throwing up your latest meal, when you ask yourself why did I do this?  There have been moments when I have told my wife that “I am done now, I want my stomach back.”  You will feel that sense of loss when you see someone eating or drinking something, you enjoy, but know that you can't have anymore. In the end though it could be worse, a whole lot worse.

I watch as friends and family battle cancer and what they have to go through. I watched as my little sister battled cancer. She had to do chemo, radiation, and then after all that have her stomach removed. Even today she has to deal with the aftereffects of the cancer and continues to fight. If you want to see real strength look into these folks eyes as they face down this disease. The strength and determination that they show as they face the unknown is amazing.

I have said it before, I got lucky, I didn’t have cancer. I just had my stomach removed. So no I do not regret my decision. I am old and stubborn in my ways, so it may take me longer to adjust and learn to live without my stomach, but the decision to remove it was still the right choice.

These were just some interesting questions I have been asked, so I thought I'd share.

Roger

I have been reading a lot of the classic novels recently so instead of a music quote, I will leave you with a quote from Charles Dickens out of his novel David Copperfield. 

“For our path in life is stony and rugged now, and it rest with us to smoothit. We must fight our way onward. We must be brave. There are obstacles to be met, and we must meet and crush them!”

The Cribbage Game

The year was 1980 and Thanksgiving was a time of celebration at our house. My grandma and grandpa from Reads Landing were up to enjoy the holiday with us. During their visit we found out that my grandpa wasn’t feeling well and the decision was made to take him to the hospital. I never saw my grandfather again. Within a few days, it was determined that he had cancer and a short time into December he was gone. An autopsy showed that he died from stomach cancer. He was 70 years old.

I am writing this because my grandpa has been on my mind a lot over the past few months. Now holidays at the Engnell house meant one massive cribbage tournament. My grandpa and dad would play game after game against each other. You would lose count on the number of games they played but when you asked them who was ahead in total games won, it was always tied. If you happened to catch one of the games at the end, you could challenge the winner of their game to a game. The hard part with that was that as kids we were just learning to play and would have to constantly run to the one not playing and say “it’s his crib, what should I throw.”  They would just smile, give us tips and teach us how to play the game. The cribbage board and the deck of cards never left the kitchen table.

My wife and I recently spent an afternoon in Reads Landing overlooking the Mississippi River. My grandfather loved that river and made his living off of it. It felt good to be there. As we sat there, I kept waiting for him to motor down the hill in his white Ford Falcon to see how I was doing. My grandpa was an amazing man of faith and strength but he never stood a chance with this cancer. He didn’t even get a chance to fight. Understanding that he had this disease, and that it took him so quickly, was just another factor I took in consideration when making the decision to have my stomach removed.

November is Stomach Cancer Awareness Month. I write this blog, not about me, but about my grandfather and the families whose lives are devastated by this cancer every year. According the No Stomach For Cancer website, nearly 1 million people will be diagnosed with Hereditary Diffused Stomach Cancer over the next 12 months and approximately 700,000 of them will die. The No Stomach For Cancer site is dedicated to the fight against stomach cancer and the support for people with the CDH1 gene mutation. They have given me support and a platform to tell my story. One of the key points of the organization is that it strives for the awareness of stomach cancer. For the past few weeks, on the organization's Facebook site, they have been running a series on families who lives have been impacted by this disease. In so many cases the stores are similar to my grandfather’s. One day they find out that someone they love has this cancer and shortly thereafter that person is gone.

I am not asking you for anything, but you can help. This information needs to be shared. The stories on the site, like mine, need to continue to make it into the lives of people at risk. I got lucky, when they removed my stomach they did not find cancer. If you read the stores on the website that is normally not the case. Many other CDH1 mutation carriers have their stomachs removed and the doctors find stage one cancer or worse lining their stomachs. Without the surgery they would have most like died. Folks at risk need to know that they have an option. Now I can tell you first hand that the option (having one’s stomach removed) kind of sucks, but it is better than the alternative. So please share the link to my blog, or better yet share the link to the No Stomach for Cancer website (www.nostomachforcancer.org). The website talks about the risk factor and gives advice for people who have a history to stomach cancer in their family. If you’re not comfortable with that then maybe you will fly the stomach cancer colors for a day or so on your Facebook page for me. It really is all about sharing the knowledge and creating awareness.

In the end, this blog is a little about me and my journey. I inherited the CDH1 gene from my mom who got it from her dad, my grandpa. And in a way, this past August, grandpa was still helping me play cribbage. This time it was against cancer and, like the child did before, I ran to him, saying “Grandpa it is cancer’s crib, what do I throw?”  I imagine him just smiling telling me I knew what I needed to throw and that I had this game. So I threw the only thing I could throw to win the game.

The guy you know without a stomach.     

Roger Engnell

Who's gonna tell you when it's too late
Who's gonna tell you things aren't so great

You can't go on thinking nothing's wrong
Who's gonna drive you home tonight

(Drive  The Cars)

Detour... Do Not Pass Go, Do Not Collect $200.00

When I look back I knew that this day was coming.  In fact I knew what was wrong two or three weeks ago, but pretended it would go away on it's own. Then this past week things became increasing worse. I had to face the facts.  I had a Stricture.

In my situation, a stricture is the narrowing of the esophagus where it connects to the small intestine. Due to this a large portion of the food I ate, no matter how small or how well I chewed it, got stuck and came back up. Edie and I had gone out to dinner one night and after two bites of food, I was a mess and dinner was done. Heck, by the end I was struggling with soft foods like yogurt. I could ignore the situation all I wanted to but the stricture was not going to get any better on it's own, in fact it would most likely only get worse.

So yesterday started out with the alarm clock going off at 4:00 am. Followed by the two plus hour drive down to the Mayo Clinic. I arrived for my first appointment at 7:00 am and didn't leave until close to 1:00 pm.  When all was said and done I had another endoscopy and a procedure called esophageal dilation. I was put under, and a scope was inserted down my throat for the endoscopy. Once the stricture was confirmed they basically insert a balloon into the area and inflate it to increase the size of the opening. I know that there is a lot more to the procedure, but they were explaining it to me as the cocktail of drugs were being administered and that's about all I can remember before heading off into la la land.  The procedure took close to three hours and as normal the Mayo staff was amazing. 

Now I was not all that worried about the procedure. The folks at the Mayo Clinic have always taken real good care of me so I knew I was safe. The issue is that strictures are like potato chips; you can't have just one. They seem to come in bunches. My sister Mel has had a number of them. The esophageal dilation helps for a while, but if the stricture returns you go back and do the procedure all over again. 

I am tired of hospitals. I am tired of needles and I.V.s. I am tired of not being able to eat what I want. I am tired of trying to find a place to puke after just a few bites of food. Yet, now I just have to wait and see if food starts getting stuck again. I really do not need strictures in my life.

So once again, more exciting time spent at St. Mary's hospital. The good news is that there was no overnight stay needed; I was able to return home the same day. The bad news is that I am back to having to check in with them every few weeks to see if and when the stricture returns.

It is my own, personal, Halloween horror story!

And it all comes down to you

Well, you know that it does

Well, lightning strikes, maybe once, maybe twice

Ah, and it lights up the night

And you see your Gyspsy

(Gypsy  Fleetwood Mac)

A tale of two lunches

“It is more fun to talk with someone who doesn't use long, difficult words but rather short, easy words like "What about lunch?""   ~Winnie the Pooh  

This past week I had the opportunity to go out for lunch on two separate occasions. Now normally these are just co-workers getting together for a bite to eat and not anything I would be worried about. However, this is the first time I have gone out to lunch, at work, since I returned from having my stomach removed. In my mind I was running thru how my co-workers react if I got something stuck while eating? More importantly, i was wondering how would I react when something got stuck?

The first opportunity was this past Tuesday and lunch was with a co-worker who is retiring at the end of the month. I ordered what I thought would be a "safe" lunch, but on my second bite I swallowed too quickly and I had a problem. Something got stuck. Then I had to tell my co-worker about it and excused myself. Not the best way to kick off a lunch hour. It took a couple of trips to the bathroom before my body was able to force the item back up, but I was able to get rid of it and then lunch continued.

The other lunch outing was on Wednesday to celebrate a couple of birthday's in the office. Nine of us headed out that day and I have to say that I was more nervous for this outing than I was for lunch on the day before. Yet, everyone was great. They asked me questions about what I could eat and what I couldn't. A few made suggestions and lunch went smoothly. Nothing got stuck. We laughed, joked and in the end had a great time.

What was different?  I don't know.

I guess that this is just how it is going to be from now on. You do not know what is going to get stuck and whats not. You may eat the same food one day and it is fine, but the next day gets stuck. What was different? Were you laughing or talking too much? There is no way to tell. I could hide from from putting myself in these situations by not going to lunch. Yet, life is too short to skip these moments. I enjoy spending this time with my co-workers, and I like food, so shying away from these events because something "might" get stuck doesn't work for me.

I am told it gets better as you go along. I hope so.

My weight has been remaining constant. I have only lost two pounds since I returned to work on September 30th. I will call that a win since I lost the two pounds on my first day back. I might gain or loose a pound here or there, however I have leveled out and seem to be holding at this weight.

Now if I could just get this eating thing down....

Worlds are turning and we're just hanging on
Facing our fear and standing out there alone
A yearning, and it's real to me
There must be someone who's feeling for me
(Higher Love  Steve Winwood)

Food

Eating enough food still seems to be my biggest daily struggle. If I don't eat enough I find myself running out of energy at different points in time during the day. From what I understand, this is my body's way of telling me to eat.  So I do my best to oblige and stuff my face with something.

Over this past week I had been able to keep my weight pretty constant. I had one day where I gained two pounds, but gave it back over the next few days. So at the end of the week I ended up weighing the same as I did on Monday.  My weight did fluctuate a lot during the week. Yet in the end I held my ground.

The challenge is that food gets stuck daily and I am left to deal with it. I get up and walk around to see if I can get it moving, or I can wait to see if my body decides to send it back up. In some cases this can be a matter of minutes, or in extreme cases a few hours. When it happens depends on where and when I eat.  It happens at work and at home, it happens in the morning or as I recently found out just before I go to bed. Anytime it happens, it hurts.
Most of the time these episodes are self inflicted. the problem is that I am eating to fast, or not taking the time to chew my food enough. Yet there are foods that no matter what are a problem. One of the more frustrating foods I am struggling with are egg noodles. They seem to be in a lot of dishes and no matter how well I chew them up, they get stuck.

One thing that does help is that the folks at work love to snack. There are homemade or store bought snacks out daily and you can really just kind of graze your way around the office. I have been able to enjoy some of them with coworkers, however I just need to be really careful on what I decide to eat.
For instance the other day I ate some M&Ms. Both the plain and peanut kind; one fun sized bag of each. Not at the same time or even close to the same time. I thought what the heck, it can't be that bad. I mean, there are what 6 M&Ms in each bag.
Well, the peanut M&Ms went fine. The are mostly peanuts so my intestines were able to deal with them. The plain M&Ms were a completely different story. All chocolate and sugar to which my body said no thank you and sent them back. Not a fun situation at work.

Other that that things are going well. The doctors want me to stay hydrated, and I have been able to do that. I keep a water bottle with me at all times. I have had opportunities to increase my liquid intake from time to time this week. I added a couple of beers, a glass of wine or a small Long Island just to top the day off.  I think I have the drinking part down pat.

And it's up too slow, down to fast
When will I be done
And each hill's higher than the last
On this roller coaster run
(Roller Coaster Run.   Michael Johnson)

Back at it.

Well I managed my first few days back at work and here are my observations.

1. The world doesn't stop when you need to get off it for a short time. It went on just fine without me. Sometimes you may wish that it would just pause and let you catch your breath, but it doesn't. The industry I work in just kept chugging along, the company adapted and adjusted to our customers needs. Things changed, progress was made while I was out and now I am left playing catch up.
It is an odd feeling to say the least. Almost like starting a new job. 

2. Sitting in the break room and getting food stuck is an awkward feeling. That happened to me on my first day back. I sat there hoping that it would pass, but it didn't. I kept looking around at the other folks in break room wondering if they knew what was happening or not? Everyone is happy that I am back and concerned for me. How do I walk out to take care of it with out raising an alarm?
I find myself now trying to time my lunch at times when there is no one in the break room.

3. Even a mild case of dumping at work or on the drive home sucks. Enough said on that one.

In the end I lost 2 pounds on my first day back. The food getting stuck and the dumping incident both happened on that day. I lost another 1/2 pound on Thursday. I have to get this under control, so I was shoving food into my face all day Friday and managed to add back one of the pounds I lost. Give some, take some.

Today started with having to give myself a B-12 shot. First time I did it. I made Edie do it last month.  United Health Care is still refusing to pay for them, but thanks to Walgreens I can get the shots for under $4.00 a shot. The same thing Target wants to charge me $18 for. I can afford the $4.00.

All in all it was great to get back to work. The trials and challenges continue, so you Just pick yourself up and keep going. Things will work out in the end.

When things look low you've gotta keep strong
 Feet to the grass, you've gotta walk it off
 The bows been tied too tight to laugh
 Feet to the ground, you've gotta walk it off
(Red Light  Jonny Lang)