Living with a stricture

So I have another countdown going on. 18 days until I have another procedure to enlarge my esophagus/small intestine connection and I really want to keep that date. I know that must sound funny, but it is true. The challenge is that I am not sure I can make it till then.

I have noticed that things are getting stuck more and more recently. Simple foods like rice, mashed potatoes and even yogurt have started coming back up. Since we celebrated Thanksgiving a week early, we were able to have pizza on the actual day. Well it got stuck and I ended up throwing up most of what I ate.

The challenge I have is that not everything gets stuck. Sometimes everything works as it is supposed to and then the next time I eat the wheels seem to come off. And that seems to be how my life has been going recently. I just feel that food is getting stuck more and more as time goes by. You end up wondering if you actually have a stricture or are you just worrying about it too much. I don't know. 

So can I make it'll my appointment? I am not sure. I lost another pound and am right at the lowest weight the doctors say the will let be at. Not sure what they will do if I drop below 193 but we might find out. 

So why wait? 

I don't have any more time left to take off this year. My work has been really amazing about the time that I have needed off for this life "adventure". I have been able to work this appointment around my schedule so that it causes the least disruption at work. Most of my time off this year has been taken off for doctors appointments and what I have left I want to use for something good. I have scheduled time off around Christmas off that I do not want to change. Jenny and Sam are spending some time with us and I want to be able to keep that time off. Is that so bad to want?

I still have a date to schedule with the U of M for steroid injections, but I am worried more about making it to the Mayo on time so that might have to wait until after the first of the year. 

We've got to hold on ready or not
You live for the fight when it's all that you've got

We're half way there
Livin' on a prayer
Take my hand and we'll make it, I swear
Livin' on a prayer

(Living on a prayer. Bon Jovi)

An Ode to Pumpkin Pie

Tonight we celebrated Thanksgiving at out house.  My daughter Jen and her husband Sam were home this weekend so it gave us a chance, as a family, to gather and celebrate. My first holiday without a stomach. How would it go? How would I handle it?

Like you have heard me say time and time again, you win some, you lose some. The meal was wonderful,we had turkey, stuffing, mashed potatoes, green bean casserole and family tradition of green jello. For the most part I was able to eat all of it, just smaller portions. The one exception was the desert, Pumpkin Pie. Now I can't tell you if it was the pie or the cool whip, but after the second bite, I had a severe dumping reaction and was done.

Pumpkin Pie... One of my favorites..  I could once sit and eat an entire pie on my own if the need arose. One of my favorite foods over the holidays.  Based on today's reaction, it is off the menu for the foreseeable future. I could tell you that this realization sucks, but you probably figured that out. Tonight my family finished the small slice that I cut for myself.

It was too much sugar and I immediately started dumping. I had to excuse myself and leave the room where the rest of the family had gathered. It really sucked. There is no other way to say it. One of my favorite holiday treats that I make every year, and now it seems as if I will not be able to eat it.

I will not let it get me down though, It was an incredible evening. We shared amazing food, followed by loud, fun family games. We drank beer, long islands, and wine while surrounding the evening with fun and love. And I am just going to bed as I write this at 1:00 AM.  All in all it was an amazing night. Yes, I will miss pumpkin pie, but if the night ends with this much laughter and love as tonight did, then it is worth it.

So, goodbye for now Pumpkin Pie, I will give you another shot around Christmas and we will see how it goes then!

And by the way!  Happy Birthday to my son in law Sam! An amazing young man who has added so much to our family.  We love you!

I'm travelin' down that lonesome road
Feel like I'm dragging a heavy load
Yeah, I've tried to turn my head away
Feel about the same most every day
(Flirting With Disaster  Molly Hatchet)

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)