A Cheering Section

Everyone needs a cheering section.
There are times when life just sucks. Times when you are faced with a problem or a situation when you need to have someone, anyone, give you a little boost to keep going. This past year I have needed to have that boost on more than one occasion and what I received was more that just a little boost. It turned out that I had a whole cheering section rooting for me. So now at year's end I wanted to say thank you.

If you think about it, these life events create a ripple effect, your cheering section causes the ripples to run in reverse. I mean when you drop a rock or something into water the ripples head away from the center. When a life event happens and you are the one being dropped in, the ripples, or your cheering section come back to you. They lift you and keep you afloat until you can manage on your own.

The core of my cheering section has always been my family. They are the reason I made the decision I made. They have never seconded guess my decision and have been there to help pull me through. They were there during the hospital stays and the many appointments. They make sure that I continue to take care of myself. They force me to stay focused and not let what is happening take the laughter and smiles out of life. Most importantly they have kept me sane though all of this. I could not have done it without them.

From there my cheering section explodes. It's filled with brothers, sisters, my mom, and my cousins. There are the friends and family friends that have known me my entire life. There are friends that I have lost touch with over the years, but have reappeared to help lift me. These are the the people have seen me at my best and at my worst yet have never given up on me.

I chose to live in a small community and it seems everyone knows about what is going on. Neighbors check up on me. People stop in to the store to see how I am doing. They stop me in the River Inn, or at church, at the gas station, or wherever they happen to run into me just to let me know that they are pulling for me.

There are the coworkers. People I currently work with or have worked with in the past. Coworkers that I have become as close as family with and others who I hardly ever get a chance to see anymore. Some of them have moved or drifted away when I changed jobs or they changed jobs, but now since this all started they were there to let me know that they were thinking about me.

There are the classmates from Princeton who have reached out to me. Some of these folks I have not talked with since graduation yet they were there at different points in time during the past year. They also let me be a part of something special during December that helped remind me what the holiday spirit was supposed to be about. It was an amazing experience.

Then there was the unexpected outcome of writing this blog. People I have never met and will never meet have reached out to me, They are from all parts of the world. They just wanted to see how I was doing and to let me know that they had been there and I would be OK.

I could go on and on and still miss people, so to everyone reading this blog. You have helped me and my family make it through a strange and tough 2015, so thank you.

As for 2016, we are hoping for a year of healing.  My wish for you is that your year is filled with nothing but happy life events. If that does not happen then I hope that your cheering section is large, loud and full of love.  Mine was.

Thank you all.

Happy New Year!

The North is to South what the clock is to time
There's east and there's west and there's everywhere life
I know I was born and I know that I'll die
The in between is mine
(I Am Mine   Pearl Jam)

Naughty, Nice or what?

The Happy Holidays Everyone!

So I have a question for you.

If you are good, Santa is supposed to put presents in your stocking right? If your naughty he is gonna put a lump of coal in your stocking, or that is how the story goes. This story has been passed down generation after generation and the rules are always the same. Naughty or nice, presents or coal. 

Now, I have never gotten a lump of coal, even though there were many years when I probably deserved one. OK, so there was no probably in it, I really deserved one, but I still got presents (thanks Santa!).  But this year, I am getting something extra special in my stocking.  Can you guess it?

Do you want an hint?   Guess who has another stricture forming? 

That’s right, Roger is getting a dilation in his stocking. I knew you could guess it. Isn’t that just special!

   

Now I keep telling myself that this is all good and since part of my full-time job is marketing I can put a good spin on this!

For instance. They need to keep the opening open. If the strictures are allowed to continue and left unchecked, then they will keep coming back and we will be in the amazing cycle for a long time. However, if they can get the scar tissue to stay at 15mm then my strictures will be a thing of the past. In order for that to happen I cannot let it get as bad as the last one was. They want to do the dilations earlier and this is all part of the long term plan. See that ones pretty good.

Another spin is that from a financial stand point it came at the best time possible. The appointment is for the week between Christmas and New Year and both Edie and I have the week off from work so neither of us need to take the day off. And most importantly it falls in this year’s health insurance calendar and thanks to the surgery I have blown past my yearly out of pocket. After the first of the year, I would have to cover my deductible/out of pocket all over again and these dilation cost over three grand a pop. See another good one. 

You buying any of this? Me neither, but it is what it is. I would love to say that these things just sneak up on you but they don't. You know that they are forming and you just have to deal with them. I have not been able to put any of the weight I lost with my last stricture back on, so today I sit at 189 pounds. The last stricture I had I let go too long. The stricture was a nasty one and I lost six pounds in four days. If I want to get ahead of these things I need to manage them and not let the manage me. So Christmas or not Christmas it has to be taken care of as soon as possible.

So I head back down Monday the 28^th and need to be there just before the butt crack of dawn for the procedure.  For those of you without a clock that reads butt crack time, my alarm will go off before 4:00 am so that I can make it to my appointment in Rochester by 7:00 am. When you are supposed to be on vacation, then four in the morning qualifies as butt crack time. 

They talked about doing it on Christmas Eve, but I just couldn’t bring myself to do that.  We spend Christmas Eve with a good friend of ours in Princeton and the thought of having the procedure before going there just didn't appeal to me. They told me that they had plenty of openings though. I guess the giving of dilations for Christmas isn't on the hot products gift list again this year.   

So in the end:

If you are Good…  You get presents.

If you are Naughty.. You get coal.

If you are Roger in 2015…. You get a dilation.

We just need to add a little to the original story.

I hope you all have a wonderful Christmas.

Have yourself a merry little Christmas,
Let your heart be light, from now on, our troubles will be out of sight

Have yourself a merry little Christmas,
Make the Yule-tide gay, from now on, our troubles will be miles away

(Have Yourself A Merry Little Christmas   Hugh Martin and Ralph Blane) 

One Little Dog

In one of my recent posts titled Regret, I made mention of how our little dog, Jake, would jump up and bark at the door when my insides gurgled too loud. Well earlier this week we lost Jake. He died of liver failure at 10 months old. The house is quiet. Elwood our other dog is kind of lost right now, not knowing where Jake went or why he is gone. He just knows that Jake is gone.

The vet said that there was nothing we could have done for Jake. For him to die so quickly, and so young from this, that his liver was probably never working properly.  Even if we had known about it, there are no liver transplants available for dogs. There was nothing we could have done to save him. So it was a matter of when it was going to happen and not if it was going to happen.

I wasn’t going to bring this up in my blog at all, but then I thought that this is why I had the surgery. Not for the little dog Jake, but for my family. Since I had the surgery, my family now has one less thing to worry about when it comes to my health. With almost a 90% chance of catching cancer from the CDH1 mutation, there was a better chance that the cancer would show up than it wouldn't. So I could sit back and let what happens happen, or take control and remove the risk from my future. I chose the latter.
We can now focus on our future plans that, hopefully, include me being around for a long time to come. In other words I plan to be bounding down the stairs, with my insides making noises for the foreseeable future. Yes, I know that there are many ways to die and that my time here is not limitless. When my time comes, it comes. There are no guarantees on when or how that day will happen; with one exception. I know that I will not die from stomach cancer. 

I have told you about my Grandfather and how he died at 70 from this disease. I have made mention of the No Stomach for Cancer website and their Facebook page where there are stories about other families and their fight against heredity diffused gastric(stomach) cancer (HDGC). The one thing I don’t believe that I have mentioned is that it has been reported that the average age for someone dying of HDGC is 39. Way too young.

It took one little dog dying so young to remind me of this and why I did what I did.  

Rest in peace little Jake. You were an amazing little dog. You will be missed. 

In harmony with the cosmic sea
True love needs no company
It can cure the soul, it can make it whole
If dogs run free. 

(If Dogs Run Free  Bob Dylan)

Dilations

The goal for today’s procedure was to increase the size of the opening between the esophagus and small intestine. I can say that today’s procedure was as a success. That’s not to say that there will not be further procedures in my future, in fact there will be, but today's dilation was a success and it felt good to get some good news for a change.

When my original surgery was completed the connection point between the esophagus and small intestine was around 20mm.  Over the past few months scar tissue has built up around the connection point and the opening has shrunk. When it gets to a certain point a dilation is needed to increase the size of the opening so that food does not get stuck on the way down and you can eat.

My first stricture was defined as being a moderate stricture and the opening was around 9mm. During that first procedure they were able increase the size of the opening only to 11mm before they risked tearing the connection which would require emergency surgery.

Today’s stricture was moved to severe stricture. The size of the opening was the same as the last time I had one (9mm), but the size of the scar tissue had increased in width and was now over 11mm wide. Thus the reason I was having so much trouble eating. The good news today was that they were able to increase the size of the opening to 15mm.  I will take that.  Due to the scar tissue, the chances are slim that they will be able to get it back to 20mm, but I will take 15 if they can keep me there.

So what is the plan for keeping me there? First part of the plan is to try to keep the stricture from getting back to 9mm again. They want to do the dilation again before it gets that small. The feeling is that if they can catch it earlier then they can keep it around the 15mm mark and get the scar tissue to stay at that level. That is why I feel that there will be additional dilations in my future. 

At the end of the day I still have a ways to go, but at least we have a plan.  I just hope it works.  

And the best way to end the day?  First a prime rib dinner at the River Inn.  Second, Jenny surprised us by coming home tonight!

A good day.

You turned the tap dance into your crusade

Now here you are all with your faith

And your Peter Pan advice

You have no scars on your face

And you cannot handle pressure

(Pressure   Billy Joel)

"I like that boulder. That's a very nice boulder" Donkey (Eddie Murphy) in Shrek

In the movie Shrek, Donkey is trying really hard to come up with something nice to say about Shrek’s swamp and the only thing he can come up with is the line "I like that boulder. That's a very nice boulder". Well I don’t have a nice line for the last couple of days and there are no nice boulders sitting around to compliment. I wish I could come up with something positive to say about this, but I can't. You see, I am heading back at Mayo for another esophageal dilation. Yes, I knew it was coming, and I had an appointment schedule for December 17^th. The only question was would I make it to that date. The answer to that question would be NO!

The team at Mayo is scrambling to move schedules around to get me in this Friday. Why the rush? Nothing is staying down and I am back on a pureed diet. I have lost six pounds in the last four days. Remember when I mentioned that there was this weight line that they did not want me to cross. Well I just crossed it, well actually I just kind of blew by it and didn't look back to even wave goodbye. That number was 194. They did not want my weight to fall below 194 pounds, it has to do with my weight/height ratio. On Saturday I weighed 196.5 pounds. It was a little closer than the doctors would have liked, but as long as I stayed there I was good. Well, this morning, I weighed 190.5 pounds. For those of you keeping score, that puts my total weight loss since August 4^th at 61.5 pounds.

This all started Sunday night. We had a nice dinner and everything seemed to be working just fine. Then about 8:00 pm I started getting sick. I was doubled over in pain and throwing everything up. Heck, I even threw up my long island and that made me sad. My wife considered taking me to the local emergency room, but their experience with stomachless patients is limited. The Mayo Clinic said I should have called them, but they would have wanted me to head down there and we were expecting 4-6 inches of snow so that two and a half hour drive was out of the question. I also do not want to be readmitted to the hospital. I am fine with a visit here or there, but I want to be done with the whole overnight stay thing. I will sleep in my own bed from now on thank you.

I did not go to work on Monday and felt better as the day progressed, however I still couldn’t keep anything down. I returned to work on Tuesday and tried to munch on snacks as much as possible with mixed results. I called Mayo and, as you might have guessed, they were less than pleased with my decisions but are working to get me scheduled in this Friday. They have me on a pureed diet again, which consist of soups and mashed potatoes and gravy. The soups can have nothing in them, no meat, no vegetables or no potatoes. So that kind of leaves me with tomato soup and broth and I am not a huge fan of either, so mashed potatoes it is.

I am shedding weight on a daily basis and not sure how they will react if and when I show up down there weighing less than 190 pounds, which is a real possibility. I guess I will find out when I get there.
Other than that, I don't have much more to say today, this is the type of situation that gets on your nerves and sours your attitude really quick.

I hope you all have a great day.

Go west young man, haven’t you been told

California’s full of whisky, women and gold

Sleeping out all night beneath the desert stars

Dream in my eye and a prayer in my heart

I should’ve been a Cowboy

(Should’ve Been a Cowboy  Toby Keith)

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)

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)

"We act normal, mom! I want to *be* normal! The only normal one is Jack-Jack, and he's not even toilet trained!" (The Incredibles)

Being normal, what does that mean? Will I ever feel normal again? If so what does that entail or is this as normal as I am ever going to be?

The picture to the left is what is left of the old Roger. I am down almost 50 lbs now. I keep eating more and more to try to keep my weight steady. Yet I keep loosing a little ground every few days.
Eating has become a chore. Something I have to think about all the time and plan my day around. Will I ever be able to just sit around and enjoy a day with family and friends without having to worry about what am I going to eat next? Will the food agree with me or do I have to plan sneak off to the bathroom to get rid of it?

Lots of questions and no answers. All I know is that it is time to get back to life and let whatever happens happen. Tomorrow I return to work with no guarantees of what that will bring. I just need to suck it up and dive in. I have a great team waiting for me to return so I will take what ever comes and deal with it.

So in anticipation of returning to work tomorrow I made the decision to get back to some of things I enjoyed before the surgery. to get back to some of the things that makes me feel more "normal".

Saturday a group of us went up to a local bar to watch a band called My Famous Friends. It was a great time with good folks, good music.... and a couple of beers for Roger. The beer tasted great and my body had no problems dealing with it.  It was the first step in reclaiming part of my old life.

Then last night Edie and I went up to the River Inn for dinner. Edie had a Long Island. I had a beer, and for dinner we had .. Pizza! I had no issues processing the mozzarella which was the big concern. Now I only had a few pieces, but let me tell you, those few pieces were amazing. I sense a pizza light being turned on in the not too distant future!

Now there are still a lot of foods that I am having problems eating. However I have successfully added Prime Rib, Pizza and Beer back into my diet and now tomorrow it is back to work.

In other words, I guess "normal" is comin back around!

I tell you somebody's fooling around
With my chances on the dangerline
I'll cross that bridge when I find it
Another day to make my stand
High time is no time for deciding
If I should find a helping hand
(The Reflex  Duran Duran)

You Win Some, You Loose Some. An Update From Yesterday

Let's start off with the good news.

I get to go back to work next Wednesday.
I was give the all clear by Dr. Kendrick's team and we are good to go. They have no concerns about my health as far as the surgery goes. My restrictions have been removed and I am able to return to my previously scheduled life to the extent that I can tolerate it. It will feel So good to be back at work.
I know that it is still work, but sometimes things are just different.
I stopped by the office last Monday to drop off some paperwork and got a chance to catch up with a bunch of folks while I was there. It felt so good to be back. I have a great team and have wonderful co-workers, so it will be good to get back. I have also been working a couple of hours here and there at the store. Again, wonderful people to work with and our customers are the best. I just need to get back into the mix at both places.

The not so good news.
First. Somewhere I lost a couple more pounds and the dietitian was not impressed. The Mayo has the official scale and if the reading yesterday was correct, I am now down almost 45 pounds. I have no more weight to loose. This is going to make the next few weeks challenging. She wants me to start counting calories again and would like me to eat 2,000 to 2,400 calories per day. I still struggle with sugar and a lot of calories come from sugar, so I am not sure how that is going to happen.

Second. I have to go back down to Mayo again on Friday to meet with the Neurology department. I am having an issue with one of my legs which is making it difficult to get around.
While in the hospital I was give a series of Heparin shots. The drug is used to prevent blood clots while you are you are bed ridden. I was getting three shots a day, and I was in the hospital a total of 15 days. So all in all, I received 45 Heparin shots while there. The shots were given in my thighs and they would switch from one leg to another. Now I have an issue where my left thigh. It has gone numb, except for the spot where it feels like a razor blade is running across it. If I stand or walk for too long it hurts, so they need to figure out what is going on there.

In the end, I was happy with the visit.  I get to get back to living. I go back to work a week from today and for the most part all is well again.

In fact on Saturday night, I am going to see one of my favorite local bands play and it might just be the time to see what the new plumbing thinks of beer. I keep you updated!

We find out what we are made of
When we are called to help our friends in need
(Count On Me   Bruno Mars)

  

A couple weeks.

Just how long is a couple of weeks? 

I hear it all the time. “You hear you are a couple weeks away from feeling somewhat normal.”  “You are a couple of weeks away from getting your strength back.”  You’re a couple of weeks from this, you’re a couple of weeks from that and it never seems to get closer. I want a date that is more definite that a “couple of weeks”

Now I have one and it is not a “couple of weeks”. It is just under two weeks. 13 days and I return to work. It may sound the same, but it is not. To many times a “couple of weeks” can drag on, but I have a date.  Wednesday September 30^th, and I get to move on from this stage of my life, turn the page and move on.

OK, so I have an update with the surgical team next Tuesday and I need to pass that. Something could go sideways on me there to delay my return, but it shouldn’t. I feel good. My weight has stabilized. I seem to be eating and drinking enough to get me through the first week or so without a huge weight loss.

Anyway, the paperwork for my return to work is signed and turned in. The first week in Oakdale will be Wednesday thru Friday.  The store will start putting me back on the schedule in October. It is all good.

So unless something bad happens on the 22^nd, I am heading back to work.

Out there in the spotlight
You're a million miles away
Every ounce of energy
You try to give away
As the sweat pours out your body
Like the music that you play

(Turn The Page  Bob Seger)

I gained a pound!

I know that in most people's lives that headline is not a cause for celebration, but in my case it is. From Wednesday to Thursday, I ate enough protein to add one pound of weight back on. This is the first time, since August 4 that, I have had a positive weight gain day. Now I may have given it back since then, but I will take the victory that day anyway. It is a good sign that things are getting a lot better.

I am now down 42 pounds since this all started. None of my clothes fit, and even my belts don't go small enough. I found a container of old clothes, not sure why I kept them, but there were jeans in there that I haven't fit into since Jackson was born 21 years ago. I need a belt to keep them on. I am not a huge clothes shopper so the thought of going out to buy a new wardrobe does nothing for me.

Eating is still a hit or miss proposition. I have found some high protein staples that have helped. Fish is my new friend. Lunchables are a great source of protein and are easy to have around and to snack at during the day, Greek yogurt is a great source of protein, but has taken me a bit longer to "acquire" the taste for. All in all I believe that I have a war chest of foods that I can eat to keep my weight up especially once I return to work later this month.

I still struggle keeping hydrated, but have found a new friend to help. Watermelon!  The first time I tried it, it did not agree with me. Watermelon pulp is stringy, got stuck going down and then proceeded to come back up. Last night I took and juiced the watermelon in the blender to create a drink and it was amazing. It was not too sweet, but had amazing flavor. It had come directly out of the fridge so it was really cold. I will be doing that more and more often now.

I have been spending a lot of time arguing with my insurance company about coverage for the supplements I will be taking for the rest of my life. It seems as if they will cover none of them, especially the B-12 shot. It is the only one I can not find an over the counter alternative for.

At the end of the day, things now seem to be turning my way. I know I still have a ways to go and need to start working on building up my stamina. Yet, for the first time in a long time, I feel good and believe that there will be a point in time when all this will be behind me.

Hey, I might just pull this off!

Happy Labor Day everyone. I hope wherever you are that you are having an amazing end to your summer. 

Things here are going really well this time.  I am, for the most part, off of pain medications. Unless I eat the wrong thing, or too much of the right thing, I do not need them.  I still have a shelf full of medications and supplements that I need to take, but I am pleased that the pain meds are for the most part gone.

I am still losing weight, but even that has slowed down to a manageable level. I have lost two pounds since leaving the hospital over a week ago.  Managing my weight by counting grams of protein instead of counting calories has helped a lot. 

I still struggle though with eating and keeping myself hydrated. I feel that will most likely come around as these next few weeks progress.   

For food they want me eating small amounts every two hours or so.  The catch is that I cannot drink anything one half hour before I eat, or for one half hour after I eat.  That makes eating and drinking challenging. You are trying to schedule when you eat and when to stop drinking.  Basically I need an hour and a half with no liquids.  I can focus on eating and then once the hour and a half is done, try to catch up on my liquids.

Bottom line is that I spend a lot less time eating and keeping hydrated than I do planning on how to eat and keep hydrated.  If that makes any sense. 

The doctors have pushed my return to work date back to the end of September. So I have another 4 weeks to try to figure out how I am going to continue to eat this way, once I get back to my normal routine.

Tomorrow will be five weeks out from my surgery and it is finally beginning to look like I am turning the corner and starting gain some steam towards getting health again.

Thanks for all your support.

Breathe in deep. Let it out.

Wash the bitterness out of your mouth.

Threes no room left for darkness when, you’re filled with the light it comes out.

(Let It Rain   Zac Brown Band)

A few steps forward? Maybe!

We just arrived home from a visit to Mayo and I might have to call this a good day.

First off, NO PICC line.  If my weight had dropped to much, then they were going to restart the PICC line and send me home with I.V.s containing nutrients.  I really do not think I could have handled that.  The thought of being at home with bags of fluid attached to me didn't sit well.  The good news is that my weight was down only one pound since early Saturday and they were pleased.  No PICC line!  First thing that has swung my way so far and I'll take it.

We also now have an updated nausea plan and a new dose of one of the medications needed to control it.  

I now have specific protein goals to help me maintain my weight. I have some new menu options and we will see how they go. They also were able to explain a issue I was having with food coming back up, so I feel good about that. They were not to pleased with the small bag of chips I ate the other day however, but in my defense the bag of chips was given to me by one of their staff members. Not my fault.

The challenge I see right now is keeping hydrated. My taste buds have changed slightly and certain things do not taste good anymore. They say it is normal and it will pass.  I just can't handle the taste of water right now. There is a foul aftertaste that makes it hard to drink and keep down. We are going to be adding lemonade to it for the time being, but they want me to drink a lot, and it is too sweet to do that. If any of you have ideas, I would love to hear them.

And for those who know me well, they said NO to diet coke, long islands and beer.  I tried.

Or would you like to swing on a star?
Carry moonbeams home in a jar
And be better off than you are
Or would you rather be a fish?

(swingin on a star  Bing Crosby)

Trying this again.

The good news is that I am home again.  I was released from St. Mary's on Saturday. My goal right now is to eat and drink. I need to slow the weight loss and keep myself hydrated. I really do not want to spend any more time in the hospital, but that remains a very real possibility. I have a follow up appointment with DR. Kendrick's team on Wednesday. Depending on how that appointment goes will determine where I end up Wednesday night. I am really hoping for sleeping in my own bed that night

The problem is that it is hard to continuously eat and drink when you don’t feel good, especially after eating and drinking. Your insides are trying to figure out how to process the stuff you put in it. You don’t have a stomach to regulate how much food goes into you intestines, so you cramp and ache.  They tell you to stop eating when your insides hurt, but that seems to happen the moment you begin to eat. You also need to keep your calorie count up and you can’t do that if you are constantly stopping after a few bites.

So in the end, this all stems from nausea. When I was sent home the first time I was not sent home with any anti-nausea medication. This time I have three different ones available to me. I am halfway through day number two without throwing up what I eat. I will take that as a positive sign that things are starting to turn in my favor (knocking on wood). 

Now I just need to keep eating..

WTF... 3 weeks post surgery and I am back in the hospital

I should be home, but I am not.
I should be eating but I am not.
I should be off pain meds, but I am not.

It all started on Friday, then escalated Saturday. I was struggling eating simple foods.  Even things that I ate I'm the hospital would not stay down.  So it was hit or miss, try something new.  Sometimes it would work, sometimes it wouldn't.  I was home though, which felt good. 

Saturday night, or actually Sunday morning, just after midnight I started getting sick.  I hadn't eaten much so it was mostly the dry heaves  they lasted until 5:30.  For the most part I slept on the bathroom floor. By anyone's standards it was a miserable night. I though I could tough it out, but when it started up again around noontime on Sunday, I was done. 

I called the Mayo hotline number they gave me and their response was that I needed to be re admitted, and they wanted to know how fast I could get there  we arrived around 3:30 on Sunday and I am still here.  Yesterday they gave me a Popsicle, some cranberry juice, and ice chips, and none of it stayed down.  Today I was given a Pic line and they will start supplying nutrients through that this evening. I am still not eating solid food and am now down 30 pounds.

They checked for a twisted bowl and it was negative.  The checked for a blockage or a narrowing of the esophagus and it was negative.  I have had C.T. scans, X-rays.  I have poked, prodded, picked at and stuck yet still no relief.  

This is getting old really fast

Looks like I will be here for a while.

And I'll drink and dance with one hand free

Let the world back into me

And on I'll be a sight to see

Back in the high life again

(Back In The High Life Again.  Steve Winwood)

A little sumpin sumpin to start your weekend.

Results on biopsies.

Stomach.   No cancer or precancerous cells found.
Lymph nodes    No cancer or precancerous cells found 
Barrett's esophagus area.  No cancer or precancerous cells found

So I got that going to me, which is nice!

All I need is some good news 
All I need is some good news 
To put me on my feet 
To put me at ease.

(Good News.  10CC)

Week 1

First week at home.

I have been home now for just over a week and how am I doing? 

Positives.

I am almost off pain medication.  Since leaving the hospital they have had me on two strong narcotics that were kind of nice, yet had some nasty side effects.  So I am completely off one and only down to taking one of the Oxycodone at bed time.  I am trying to manage my discomfort with Extra Strength Tylenol.  My goal is to be off the pain meds tonight or tomorrow. 

Am I pushing to fast to get off them?  Maybe.  But I have a goal.  I want to be able to drive my car again, which I can’t to while on them.  I want to be able to poop freely without stool softeners or prune juice, which I need while on them. But the number one reason is that I want to enjoy a cocktail again.  Not that I need to have it, but I want some semblance of my life before the surgery to return.  Most likely will not be a beer or a long island, but I would like to sit on the deck once more and enjoy a nightcap.

I have slowed down the weight loss.  I am down another pound and a half, but since I dropped almost 8 pounds over the first couple of days, I will take that as a sign of slowing.  Now down 21.5 pounds since the day after my surgery.

Negatives.

I miss sleeping on my stomach or even on my side.  I sleep on my back, or I pay the price.  Your stomach has a flap that keeps the contents of your stomach from re-entering your esophagus.  When you sleep that is closed and all is well.  They removed mine with the stomach.  So if I lay down and for whatever reason my head slips below the level of the rest of my body, whatever is in there comes back to visit me.  If it makes it to your lungs, then you will spend 15 minutes or so in the bathroom in incredible pain.  It has happened to me twice this week.

I haven’t gone a day without my body rejecting something I ate.  It may be something that I ate just fine yesterday, but not today.  I wish I could go 24 hours without having something not coming back up.  I mean simple pleasures like popsicles.  I had them all the time in the hospital.  Yet since I have been home it has been hit or miss as whether or not they stay down.

I have called the help number at the Mayo clinic three times this week, looking for answers to help me get by.  The good news here is that they have not threatened to block my number yet.

I have spent three and a half hours in a local emergency room getting fluids because I was dehydrated.  I was also told that I am not eating enough and was showing signs of malnutrition.  Seriously did you read point one here, I am shoving all sorts of things into my mouth, yet the problem is that the food is not staying down.

I guess we can call it.  Transition week 1, Roger 0.  I will move on to week two.

so why would you care
to get out of this place
you and me and all our friends
such a happy human race
'cause we're tripping Billies

(Tripping Billies  Dave Mathews Band)

The first 48 hours or so home

OK, so I used a lifeline, or called a friend as it was called on the game show "Who Wants to Be a Millionaire".  I had been home for just over 48 hours and was struggling to get myself on a schedule as far as eating, sleeping and taking my meds goes. So I spent part of Wednesday night on the phone with my sister Melanie who also had her stomach removed. Then part of last night with doctors from the Mayo Clinic. I get that there is still pain involved as my body continues to heal, but there was something else going on and nothing I did worked, so I needed help.

I know that my sister Mel had gone through some of this so she was my first call.  We talked for about a half hour or so and she may have left the conversation feeling that she did not help, but she did.  I just wouldn’t know it for 24 hours. More importantly, it was just great to hear her voice. 24 hours later I broke down and called the Mayo Clinic hotline number I had been given and within minutes was talking with one of the doctors who had handled my case while I was down there.  An amazing service by an amazing facility. 

I would go into what was going on physically, but it really is disgusting. It involves flem, mucus, throwing up every time you eat, but it is early here and none of us really need that at this time of the morning.  Both Mel and the doctor talked about gas and how I could still have gas trapped inside of me from the surgery.  Mel talked about a Gas-X product that just dissolved under your tongue but all we had were the pills. I hadn’t been able to keep anything down so the thought of swallowing another pill held no appeal to me.  I would just tough it out until we could get some.  Needless to say I did not make it and finally took one of the pills last night around 8pm.  Almost instant relief.

I had also been having trouble sleeping since leaving the hospital, I just couldn't get comfortable. I would get an hour here or there but that was it.  Melanie recommended this product called the wedge pillow and it is just what it sound like, a pillow in the shape of a wedge.  Last night I had my first, uninterrupted, 4 hour sleep. It may not sound like much to you, but for me it was a slice of heaven. 

You see, sometimes you just need a lifeline.

My wife Edie has been amazing through all of this.  She keeps asking me about my meds, if I need to rest or when was the last time I ate anything. It is just that the answers to those questions are difficult to say the least. She has been a trooper and went along when I would ask to go outside for walks during this heat.  I have to admit that the last time was just so I could walk through the sprinkler system running outside.

This is my transition week. Can I go from being the old Roger to the new Roger without having a bevy of nurses and doctors around?  So far the answer to that question is no, but I am getting better.  

For those who want to keep score, I have lost 20 pounds from my first post-surgery weigh in on August 5^th.

What would you think if I sand out of tune

Would you stand up and walk out on me?

Lend me your ears and I’ll sing you a song

And I’ll try not to sing out of key.

Oh, I get by with a little help from my friends

Mm, I get high with a little help from my friends

Mm, gonna try with a little help from my friends

(With A Little Help From My Friends  The Beatles)

Chapter One Has Ended,

Well, I built me a raft and she's ready for floatin'
Ol' Mississippi, she's callin' my name
Catfish are jumpin'
That paddle wheel thumpin'
Black water keeps rollin' on past just the same
Old black water, keep on rollin'
Mississippi moon, won't you keep on shinin' on me...........

Yeah, keep on shinin' your light
Gonna make everything, pretty mama
Gonna make everything all right
And I ain't got no worries
'Cause I ain't in no hurry at all

I'd like to hear some funky Dixieland
Pretty mama come and take me by the hand
By the hand, take me by the hand pretty mama
Come and dance with your daddy all night long
I want to honky tonk, honky tonk, honky tonk
With you all night long
(Black Water  The Doobie Brothers)

Thanks you for all the well wishes and prayers......
I'M GOIN HOME!

So.. What went wrong? (warning.. Post operation image included)

Where do I start?  Short answer seems to be nothing.

For example, the surgery.  The surgery was supposed to be done laporscopicly.  Five Incisions, three for tools and a camera.  Then two to take out my stomach and to connect my new plumbing. Easy, Peasy.

However, once the got my stomach removed they found that the connection of the intestine to my esophagus could not be done laporscopicly.  Too much tissue and stuff in the way to pull it off. So the decision was made to open me up.  One cut center of my stomach, seven inches or so and the rest of the work was completed there. I can remember waking up in recovery and arguing with the doctors that they had not done that and they were wrong. I lost that argument. At the end of the day all it does is increase my healing time, but I really didn't want that scar messing up the six pack I planned to put there. 

So what happened during gutless days three and four? 

As I mentioned in my last post I was moving on to puréed food and to be honest the puréed pancakes were fine.  Dr Kendrick came in to check on me and I mentioned to him that I was sweating all the time even after a shower.  His concern was that sweats after this type of surgery can be a signal of a leak.  So off for a C.T. Scan I went.  Worst experience ever. I won't go into the details here, but there are folks here at Mayo having "conversations" about how bad it went. 

Th results from the scan showed a leak.  So what we did not want to see. All my blood work was fine but the leak was there and everything had to change.  No food, no water could be ingested for at least 48 hours.  Drugs could only go in via the I.V.  Then, another C.T. Scan and the we start the whole thing over.  The flooded me with antibiotics and hope that it would fix it or it would be another round of surgery.  I so did not want to have another C.T. Scan.

The rest of Saturday and all of Sunday were about managing pain and trying to keep me from drinking anything. Even without a stomach you still get thirsty.  The pain medication made me sick to my stomach (which I no longer have).  And yes,when someone is eating something nummy you still want to take it from them. Hunger pains or no hunger pains. 

This morning at our second round of doctor check ins, Dr. Kendrick came in and said that something wasn't right.  If I had a leak, then my blood work should show signs of the infection.  So he looked at the C.T. scans again and feels that the "leak" was just a staple used to hook up my new plumbing.  At least he is going to treat it that way until my blood work tells him something different.  

Bottom line is that I am back to having clear liquids and might be cleared to go home on Wednesday.

Yea Me!

But I had no way of knowing

Just how hard this journey could be 

Cause the valleys are deeper
And the mountains are steeper than I ever would have dreamed

But I know we're gonna make it
And I know we're gonna get there soon 

And I know sometimes it feels like we're going the wrong way 
But its just the long way home
(Long Way Home  Steven Curtis Chapman)

So I'm not dead yet, I don't want to go on the cart

Day 3 and 4 gutless.
Yesterday they moved me from a clear liquid diet to a purée diet.  Meaning I can have mashed potatoes and gravy. I have not tried the soup and broths yet, but after yesterday's adventures with food  they seem like a natural switch. I am trying the puréed pancakes for breakfast this morning so I will let you know how that goes.
I woke up yesterday feeling bloated and the pain was intense  they had me on  dilaudid pump for pain that I could push every ten minutes.  I just could never tell the difference and sine I cannot leave the hospital while still using it, I had them take it out. My sister Melanie and her husband Jim came back down to see me, but I hurt so bad I couldn't stay awake.  Sorry guys.
Next thing I knew it was a few hours later and I awoke to find my cousin Kathy sitting next to me.  Wasn't expecting that and it sent me into a coughing fit.  The good news is that it released the gas that was trapped inside.  Hurt like hell but afterwards I felt a lot better.
We topped off yesterday by getting moved into a private room .

Today has started off ok. Dr Kendrick came in and said that if I have a good day today with no pain the there is a possibility that I can go home tomorrow.  So much for that.
They sent me down for C.T.'s and that is where things went backwards real fast.
Now it's three steps backwards. Nothing to eat or drink for a few days  They are trying to get a hold of Dr Kendrick but it looks like I have sprung a leak. Not what I wanteted to hear.  No food or drink until they find out if it will heal itself
Today was by far the worst day here..
Some days suck.

Day 2 Gutless

Well I am up and moving some more. Still on a clear liquid diet though. May try some purée tomorrow though.  Not sure what they will purée, but I will be sure to share it with you all through the fabulous world of the Internet.
Slept a lot yesterday and had some guests.  Maddie drove down to see me as did Mel, Cody and Jim.
I find Myself getting tired really fast.


Had a pretty tough night last night as first I got a roommate who didn't know the meaning of its fricken 2:30 in the morning and I don't care what the republicans are doing.
Second I got dehydrated and had to have a catheter put in around 3am. So forgot how much fun they were to install.

This morning they took off the bandage covering my new scar 6-8" of fun.  I will need help coming up with a new story for that one.

There is nothing that is wrong

In wanting you to stay here with me.
I know you've got somewhere to go. 
(Lay down Sally. Eric Clapton)

Officially gutless

I am back, kind of anyway.  I just wanted to say hi and thanks for the support.

I am still on a liquid diet due to the fact that they ended up having to open me up to do the surgery.  The original plan was make 5 small two inch incisions and remove my stomach through one of them.

I wifi be in the hospital another day longer, but all in all am glad for the procedure to be over and for strong drugs

Until later..