Unexpected news

I received a phone call out of the blue from the Mayo Clinic today. At first they only wanted to see how I was doing after the procedure last week. We exchanged notes on how I was doing and, in their opinion, what I could expect over the next week or so. Then the conversation took an unexpected turn.

After the procedure last week the doctor who removed the stent told me that they had done nothing with the tumor. With everything they had done it would have been to risky. What he failed to mention was that they did indeed take a biopsy of the tumor while they were in there and the call today was to update me on the results.

The results.....
The tumor was benign! Nothing to worry about.  Just a unexpected blip on this long and winding path. Benign!
They informed me that unless something goes sideways, I am done at the Mayo Clinic. Done with Mayo Clinic. Done with dilations. Done with strictures. Done with hospitals. Done with this phase of my life.
It has really been a good week!

I'm gonna win, yeah
I'm gonna win
You see it's a matter of pride
Deep down inside
I'm gonna win, yeah
I'm gonna win
(I'm gonna win. Foreigner)

One week, 7 days…

This will be a short post, but I needed to write about this past week. 

Last week at this time I was down at the Mayo Clinic having the stent removed. Or as I named it “that damn stent”. I know that the stent played an important role and it did its job, but that doesn’t make me like it any better.  I remember when the doctor walked into the room before the procedure, he asked me if I knew what they were going to do to me. I replied you are going to get this damn stent out of me. He just smiled and said “yes, we are”.

Since then, for the most part, I have been pain free. The pain in my chest where the stent was located is gone. I wish that I could put into words how good this feels, but I cant. It is just that for the first time since this all started on August 4^th, I am pain free and it feels amazing!

I am off all medications and only need to take my supplements. My weight has stabilized and I sit at 173 pounds. I am still on a “modified soft diet” for a few more days so putting on weight is going to be a challenge. However after Tuesday I can start adding things back in. One of the foods they took off the menu for this period was pizza. I don't know why it was removed, but I can tell you without a shadow of a doubt that it will be one of the first ones added back into my diet.  

Then there was yesterday. Easter Sunday. A friend and I served the community breakfast through our local church. Larry and I have done this for the past 6 years. It is something we both look forward too and have a lot of fun doing. Three weeks ago though I didn’t know if I would be able to handle it. The pain and the nausea was constant reminder that I was not well and I didn’t know if I would make it through the morning. But with the stent gone, I felt great. We ran the kitchen like we always had, snitching samples of everything we wanted and the six hours flew by. We laughed and had a blast.

And there was no pain.

What a week!

Fantasy could never be so giving

I feel free, I hope that you are willing

Pick your feet up, and kick your feet up

Dance with me

(Dance with Me  Orleans)

Stentless...

Here is quick update from yesterday.
First and foremost the stent is out! I can't tell you how happy that makes me. For the most part I am pain free for the first time in a long time. I noticed that pain in my lower abdomen was gone almost immediately. It was a great way to wake up. They did have to use a breathing tube on me yesterday so I have a sore throat from that, but other than that I feel good.

So where did all the pain come from? They think that they figure that out. The image you see is a drawing of the connection from esophagus to my intestines after my total gastrectomy. According to the drawing that the doctor drew yesterday, I think that the image is reversed, but it will work for the explanation.
As you can see, it is not a straight shot from where they connected one to the other and the stent had to run through both. So the stent basically ran from where you see the arrow point on the esophagus side to about the arrow point on the jejunum side. Which included that nasty bend. The stent was not a natural part of my plumbing so it didn't work the same. Due to that food was getting stuck in the stent and plugging it which caused the pain. Now that the stent is out things seem to be flowing smoothly and working as they should.

As for the tumor.
They only took an ultrasound of it yesterday. They did not biopsy or remove it. They felt it was too risky to do during yesterday's procedure. The ultrasound images did lead them to believe that the tumor is not cancerous and should not cause me any problems however the only way to be 100% sure is to remove it. Now your esophagus is made up of five layers and the tumor is located in the forth layer. The only way to remove it is to cut it out which will create a hole in my esophagus. With everything that I have had happen since the surgery, they want me to heal before they go down that path. So the plan is to watch it over the next year and if it changes in size or shape then they will remove it at that time.

For now I am back on a total liquid diet for the next two days and then a modified liquid diet for a week or so after that. My weight has stabilized at right around 173 lbs. I will be happy if I can come out of this restricted diet time holding this weight. Once I can eat again, I will focus on adding weight back on.

Thanks for the support yesterday,

And if you're not afraid to open your eyes
You may be pleasantly surprised
Things are never as bad as they seem
You just gotta learn to see
The forest for the trees
(Forest For The Trees  Huey Lewis And The News)

Monday

Monday I head back down to the Mayo Clinic, hopefully to put and end to this little life interruption. I know that things could still go sideways on me, but such is life and I will roll with whatever happens.

My goals for this Monday are as follows:
First and foremost get this damn stent out of me. I know I have said it before but I hate having this thing in me.
Second I want off these drugs. Oxycodone makes you all warm and fuzzy. It does the trick and they gave me enough of it to last a while. The challenge comes with the side effect. And it's not just with the oxycodone. All of the drugs I am on have the same side effect, so the sooner I can get off them the better.

I also need to end the drama surrounding the tumor. Whatever it is, wherever it came from, it needs to go away. Just remove it. I want it out of my body. I hate knowing it is there. They are already going to be in there so just take it out.

Well that's it until after the procedure. I know that I have been posting a lot recently and I apologize for that. It is just that I feel that this may be all coming to a head and as you can tell it is a little stressful. Thanks for sticking with me.

You need direction, yeah you need a name
When you're standing in the crossroads every highway looks the same
After a while you can recognize the signs
So if you get it wrong you'll get it right next time
(Get It Right Next Time  Gerry Rafferty)

170 Pounds Anyone??

I will quote Michael Keaton from the movie Beatlejuice....  "I've seen the movie 100 times and it just keeps getting funnier." He was talking about the movie The Exorcist. I might not be talking about a movie, but I am stuck in my own personal horror story.

The other morning I weighed myself and the scale read a new number....  171 lbs.  I am closing in on 170 pounds. What the heck?

Here is what I know. I know that 170 pounds will not be a good number for me. I know that I have no idea when the last time I was at this weight. Maybe in 9th or 10th grade when I ran track?

Here is another thing. I do not like they way I look right now. So there will be no crazy selfies in front of a mirror anytime soon. I know you were all waiting for one. However, the closest you will get is that picture of the stick person I posted in my last blog. At the rate I am shedding weight it is good resemblance.

I am not sure how to react anymore. I try to eat and stuff my face with food. One moment it is fine and then the next I am throwing up. Staples like ground beef are hit or miss. Even soups are an adventure now. I still have a few days before the stent comes out and probably a few days on a liquid diet afterwards. So there is a chance that I have not hit my bottom weight yet. 

The good news in all of this. I had a doctors appointment last week with my normal health care provider, Kara. She was concerned about the weight loss and decided to run all new blood work to test for malnutrition. All the tests came back fine. So the blood work from both the Mayo Clinic and the University of Minnesota Heath systems say that I am healthy, just really skinny.  

This morning I was back over 173 pounds, which was nice. I also have to believe that things should start to swing my way after Monday. That is the day that I head back down to Mayo and this damn stent comes out. There will also be an ultrasound taken of the tumor and decision on what to do with that. And just maybe, depending what they see and how the other procedures go, a biopsy may be taken and we can put this new twist behind me.
I can only hope.

Like I said it all just keeps getting funnier.....

Been down one time
Been down two times
I'm never going back again
You don't know what it means to win
Come down and see me again
(Never Going Back Again  Fleetwood Mac)

"I Pooped Today"

My son has this t-shirt. It is a simple shirt that I can only imagine that someone has made millions of dollars off of. It is of a stick person with its hands in the air and a big smile on his face proclaiming that “I pooped today”.

My son loves to wear that shirt. This past year when we went to have our yearly picture taken with Santa, he had on his I pooped t-shirt. He goes as far as to try to strategically place himself so that the shirt can easily be read in the photo. And he never lets you know that he has it on before you get there. He just waits and then just before the picture is taken he takes off a sweatshirt and smiles.

That’s my boy!

So why would I write about a t-shirt saying? Well after the stent was put in I was in pain and couldn’t keep anything down. So when I was back down at Mayo last week I had them change around my pain medications so that I could manage until the stent comes out later this month. My pain management regiment was then changed to consist of a rotation of Tylenol, Tramadol, and Oxycodone. All at varying times, all prescribed to keep Roger warm and fuzzy.

However, one of the main side effects of hi-dose pain medications, that they tell you about but you ignore, is constipation. You can’t poop, or in this case I couldn't. Yeah, there I said it and feel free to stop reading now if you wish. This blog will get not get much better.

Here is the issue being constipated without a stomach. You have no storage space. Once you get backed up everything just shuts down. You can't eat or drink anything. There is no place for anything to go. Your body just sends it back out the way it came. The only medication I could keep down was the Oxycodone, because that was in a liquid form and my body was able to absorb it before my insides could decide that there was no room for in and send it back up. The challenge there is that the Oxy was the strongest of the pain meds I was on and therefore the one causing most of the problems.

Now I have been on Oxycodone since the stent was put in on the 23^rd of February. It has been a constant friend since then and I cannot tell you when the side effects started for sure. All I can tell you is that things started going downhill fast right away on Monday morning. I made it at work until 10am on Monday and then had to leave. Tuesday and Wednesday were a little better and I was able to tough it out until about 1pm on both days but then had to head home.

By the time last night came around I was grasping at straws. I had even gone so far as to tell myself to shape up or I was admitting myself back into the hospital on Thursday morning. I told myself I was serious this time and I was going to let them do whatever they want to me to make the pain go away.  

Got a garden hose?  Great!   

Want to stick it where?  Go ahead! 

I am not above threatening myself to get what I want. 

Well I had stopped taking any pain meds other than Tylenol Tuesday night. My hope was that 24 hours off of the strong stuff would help kick start things. And it eventually did. About two thirty this morning things started moving. Today I feel better and things seem to be working as they should. If you think this is "TMI", well I warned you to stop reading.

I can tell you this though, not taking any of the stronger drugs, with this stent in, still sucks and I hurt today. 

And not eating anything for three days has not helped me gain any weight back and I am now down to 174 pounds.

Yet, if I had Jack's t-shirt I would be wearing it and probably smiling like the stick figure guy. 

There are times when all the world's asleep,

The questions run too deep for such a simple man.
Won't you please, please tell me what we've learned
I know it sounds absurd But please tell me who I am.

(The Logical Song  Supertramp)

Quick Friday Update and A New Plan....

There are still questions to be answered but after spending most of last Friday at the Mayo clinic I can say that we now have a plan.

Here is what I know:
March 21st, the stent comes out! YES!
It is hard to express how much I hate having this thing in me. I can feel right where it is and it hurts all the time. It makes eating almost impossible. You take one bite of something and you are fine, two bites later and you are throwing it up. Even drinking a beer or having a long island have become a challenge with this thing in.
They have me on pain and anti-nausea medications. They help me function but the dull ache is always there. Again, the good news is that the stent comes out soon. Hopefully I can get back to being my non-medicated self after that.
 
Before then I need to have an X-Ray taken. The purpose of the image is to make sure that the stent did not "migrate" down into my intestines. That would be bad. This is going to happen this coming Friday. The good news here is that we have made arrangements to have the image taken here locally and the results sent down to Rochester. I do not have to drive two and a half hours for a 15 minute appointment.

As far as the tumor goes, there seems to be differing opinions as to what exactly it is. The surgeon who did my gastrectomy, Dr. Kendrick, does not understand how they could have done eight endoscopies and not seen the tumor. He feels it has to be something other than a tumor. The doctor who placed the stent in still swears that it is a tumor so we will be proceeding as if it is. I guess we will find out sooner than later.
So what does that mean? First off they are going to go in and take an ultrasound of the "tumor" to get a better understanding of what they are dealing with. They will also be prepared to biopsy it at the same time. Good news here is that I do not have to wait long for this procedure. It will happen on the 21st when the stent comes out. Again all good news... I am thinking that the 21st could be a really good day!

I would also like to send a huge thank you to my little sister Melanie for tagging along with me on Friday. It was really nice spending time with her, even if it was between appointments. The look on Dr. Kendrick's face when he found out that he had both of the "Wonder Twins" in the house was priceless.

I was told a million times
Of all the troubles in my way
How I had to keep on trying
Little better ev'ry day
(Keep Yourself Alive  Queen)

Lucky Number 7?

This won’t be a long post, but today marks seven months since I had the surgery to remove my stomach and guess what? I am headed back down to Mayo again. 

Today’s appointments “should be” pretty easy. Another round of X-Rays, then a meeting with the surgical team to review the films and the results from my recent blood work. There will be some initial talk about what to do about the tumor that was found during the stent procedure, but no plans will be put in place until the stent comes out.

Once completed I should be on my way home.

This will be the first time that Edie will not be accompanying me on the journey to Mayo. It only seems fair that she get to skip a few of these, especially if they are going to be happening weekly until the stent is removed.

When I started this little journey my weight fluctuated between 248 and 252 pounds. I was overweight. My doctors wanted me to lose about 20 pounds. Today I am struggling to get back to 180 ponds and have been as low as 176. Today I was at 178 and am now classified as underweight and the same doctors want me to add pounds back on. There is just no pleasing them .

I didn't do a food tour before I had my stomach removed, so maybe there should be a “fattening up Roger food tour”? What do you think? If you want to meet somewhere and try to help me pack some weight back on once the stent is gone I am game.  

The rules will be simple.

Remember I am really no fun at a buffet.

You are going to need to eat with me.
And it has to be a place where no one will be offended when we talk loud and laugh hard.

I want to thank you for all the support I received over this past week or so.  I could tell you that this period in time sucked, but if you already know that. To top it off, Wednesday was my son’s 22^nd birthday and I wanted to take him out for a beer to celebrate. So I did. I ordered a pint of my favorite beer and couldn’t come close to finishing it.

You try to be strong, you try to stay positive but the hits just keep coming. You just shake your head and wonder what now. I want to feel “normal” again. To have a day without pain. A day without having to mix medications together just to function. 

Enough, I have to spin myself out of this funk, I know it could be a lot worse. Besides, I was never quite “normal” to being with so it was a little bit of a stretch to think that this little adventure would be anything other than abnormal. 

The same old tingle that I feel inside

And then that elevator starts its ride

And down and down I go, round and round I go

Like a leaf that's caught in the tide

(That Old Black Magic  Frank Sinatra)

Gunga Galunga.... Carl Spackler.

This movie is probably one of the most re-quoted movies of all time. We (Guys) will use this quote time and time again, We will change the words and put them in any order we need to land our point. Most of the time we have destroyed the meaning and pronunciation of the even the simplest words but we are guys and that's what we do.
Yet, this week I find myself once again wondering if I will be able to mumble this simple phrase at the end of this ordeal.

I told you all about the the stent process, the ambulance ride and overnight stay, but I left one thing out. They found a new tumor. Yeah, insert whatever four letter word you would like to here and I have said it. Trust me.

I can remember bits and pieces of the conversations going on while in recovery. I can remember my wife having a "disagreement" with the doctors in recovery on something, but I just couldn't pull it all together. Then I started getting sick and the decision was made to move me to St. Mary's. From there everything shifted from their conversation to getting me moved quickly. Then the conversation just never came back up. I wanted out of the hospital and was more than willing to skip processing anything else that could delay me from my potential release time.

Then on Saturday I started having that nagging suspicion that I was missing something. I knew that whatever it was,it was important. So, I spent a bunch of time just walking up and down the stairs to our basement. Over and over until I could remember one word. Tumor. I asked my wife about it and she confirmed it. They had found a small tumor in my esophagus above where the connection was. They had apparently come in to talk with me twice about it and both times I apparently told them I was fine. I guess I lied.

I talked with Dr. Kendrick's team twice yesterday on this and here are where we are at:
* There is nothing that we can do about the tumor until the stent comes out.
* My body will need time to heal before another procedure can be done.
* It will require another dilation, a ultrasound, and most likely a biopsy at that time.
* It would have been too much to try to take it out during the last procedure so it was left in.
* They do not believe that it is cancerous, but only a biopsy will tell us that.
* I will be meeting with them on Friday to get more information and hopefully a plan to deal with this latest set back.

I really need something to break my way. Just once that's all I am asking for. It's not too much to ask for and I know it will,
It just needs to happen sooner than later....   So I got that going for me....

The neon moon was lookin' over her shoulder
She was sippin' wine and tellin' lots of tales
When the barflies are off the wall
It's hard to stand up straight and tall
When you're lookin' for someone to go your bail
(Putting The Dark Back Into The Night    Sawyer Brown)