Yesterday.. Some answers and then some..

Yesterday I had my fifth dilation at the Mayo Clinic.

Here is what I know:

• They were able to get my opening back to 15mm. They did not tell me how narrow the opening had gotten, but since I just had a dilation the beginning of last week it should not have closed much.
• I did not have a steroid treatment this time. I had a steroid treatment with my dilation on the 11^th, so it was too soon for another one.
• They are also not worried about the tear. The tear occurred in the scar tissue and not my esophagus as originally thought. The scar tissue will tear during a dilation on a fairly regularly basis and as long as the tear does not perforate the esophagus you are fine. I was also told that if a tear creates a hole anywhere (esophagus or intestine) during a dilation that I would know about it by waking up in recovery after emergency surgery. I didn't wake up in recovery after emergency surgery yesterday, in case you were wondering. 
• The pain I experienced after the last procedure was because of a series of biopsies taken during my procedure on the 11^th. The doctor doing the dilation will do biopsies if they notice that the scar tissue growing or changing in anyway. According to the doctor yesterday, they just wanted to make sure that the scar tissue contained no residual cancer or precancerous cells. Everything came out clean which is nice.

See all good news……  So far….  But then.....

After the dilation I met with my surgeon, Dr. Kendrick, and things went downhill quickly. One of the first few lines out of his mouth was “I have a plan to end these dilations, but you’re really not going to like it.” 

“We need to put in a stent” was all he said.

“Crap” or actually the potty mouth version of that word was all I could come up with.

The procedure to put the stent in is pretty much the same as the dilation. They are going to go in and expand the opening out to 15mm. Once that is complete they will insert the stent into the area and let the scar tissue close on it. The idea being that the scar tissue will be held in place by the stent until such time as the scar tissue establishes the 15mm opening as it’s permanent place of residence. Then the stent can be removed (two to three months later) and all is well. Well at least that’s the plan.

I have mentioned my sister Melanie a few times in these postings. She had her stomach removed a year ago. Due to this I have been able to use her as a sounding board for some of the decisions I have needed to make. No matter what it was, there was a good chance that she had gone through a similar experience. Now where our stories are similar they were not always the same. Dr. Kendrick was quick to point that out, yet his comment that I was “really not going to like this” was based on what happened to her.  

After a number of dilations it was recommended to Melanie that she have a stent put in. Which she did and her body almost immediately rejected it. Long story made short, she spent 4 days in the hospital trying to recover from the little stent experiment. She continued to have to have dilations after the stent came out. So in the end the stent was just a painful, horrible mistake.

Dr. Kendrick pointed out that what happened to Mel was “not normal” and “was the exception and not the norm”.  What? Not the norm? None of this is normal.  A normal person doesn't have their stomach cut out. And of the people who do have their stomachs removed it is not normal to have to have strictures. The ones that have strictures only have to have one or two dilations and it fixes it. The number of people this affects just keeps getting smaller and now you tell me that there is a normal to the abnormal? The percentage of people who have had to have a stent put into the keep the connection between their esophagus and intestine open, after having their stomach removed, is probably just north of nil. So having one of them go bad is probably a pretty high percentage I am sorry to say. Not normal my ass. There I vented.

In the end I am having the stent put in next week. I am tired of having dilations. If there is even a slim chance that putting the stent in will put and end to them then I will take it. I would like to say that I have had enough go “wrong” on this little adventure that something has to break my way but I am not that optimistic anymore. I won’t know if it worked or not until I wake up from the procedure. Hopefully not after an emergency surgery. 

Are we having fun yet?

She said, "Boy, I'm gonna give you the ride off your life.

We're only gonna do it once, but we're gonna do it right.

If you're into taking chances, you better hold on tight.

Cause I'm gonna give you the ride of your like.

(The Ride Of Your Life  Restless Heart)

Quick update from yesterday's dilation. Updated 1-20-16

Yesterday was my fourth dilation at the Mayo Clinic. Normally this is a fairly easy, painless procedure, however yesterday was different. In an attempt to end these appointments, they added a new step into the procedure. They injected the scar tissue with steroids. The plan is that the steroids will decrease the amount of swelling that is happening with the scar tissue. Once they stop the swelling then the opening should remain at the 15mm size going forward.

My appointment was for 1:15 but the actual procedure did not start until round 2:20 or so. From what I understand the procedure went fine…

Except:

I don’t remember getting dressed afterwards.

I can remember seeing my wife in the waiting area, but do not remember leaving the Mayo Clinic.

I can only remember bits and pieces of the two and a half hour ride home from Rochester.

By 7 o’clock last night I didn’t feel good, threw up my supper and was in bed. I was done.

Now today there is a spot inside of me where it feels like it was stuck with a needle multiple times.  I know it was stuck with a needle multiple times. I am just not sure I should be feeling it.

As I mentioned this was my fourth dilation and this is the first time that I have had any of these issues.  

Since the procedure was so late in the day I did not get a chance to meet with the surgical team to see how the procedure went. They usually go over how bad the stricture was this time of the dilation and what they were able to expand it out to. They are supposed to call today to review these results with me. When they do call I hope to get some answers to what happened yesterday.

The other thing they need to know about is that I have lost 4 pounds since Sunday morning and am now down to 186.

Enough already…

WEDNESDAY UPDATE
I received word from the surgical staff late on Tuesday that I need to return to Mayo next week for another dilation and steroid treatment. The stricture had returned down to a 9mm and was classified once again as severe. To add on top of this they found a tear in my esophagus near the incision. They feel if they can stop the strictures from forming then the tear may heal on it's own. I will be meeting with the surgeon who performed the original surgery to get his recommendation on this latest little adventure.
A tear anywhere is something that they warn me about every time I have a dilation. They go over the warning signs and give you strict instructions that if you notice any to head to the nearest emergency room. So to hear them say the words is a little unnerving to say the least.
Did I say Enough Already???  Yeah I did..

It's down to this

I've got to make this life make sense
Now I can't tell what I've done
Now again I found myself so far down away from the sun
That shines to light the way for me

(Away From The Sun  3 Doors Down)

One year

This all started right around this time a year ago.

On Monday January 19^th of last year, I stopped by the University of Minnesota genetics lab in Maple Grove Minnesota and there was a kit waiting for me. One needle prick and 6 or 7 vials of blood later and it was complete. On that day, I didn’t meet with anyone else. They told me that they would know my results within a few weeks and I was on my way. I left that genetics lab wondering how my life would change if the test came back positive. I left hoping that with everything that had happened to our family in 2014 that I could dodge this bullet.   

A lot has changed since that day.

• I no longer have a stomach.
• I have been introduced as “the guy who doesn’t have a stomach”.  Which is still kind of weird to hear people say.  I even had a young lady argue with me that I was making this all up. I had to have a stomach because she was positive that you couldn’t live without one. To this day I don’t believe that she believes me.
• I have had two extended hospital stays, one for the surgery (9 days) and one for a “fun” follow up visit (6 days).
• I have had three dilations and working on planning the 4^th one.
• I have lost 62 pounds and now weigh about what I did when I graduated high school.
• I give myself B-12 injections on the 3^rd of every month. That is a big thing considering my dislike for needles and shots.
• My supplement regiment consists of two chewable Flintstones vitamins and 4 chewable tums every day. I find it amazing that with all the prescription drugs out there that these two are what the Mayo Clinic recommend that I take to maintain my health.
• I will give myself the B-12 shots and take the other supplements for the rest of my life.
• The only over the counter pain medication I can take is Tylenol.
• I haven’t had a diet coke since August 3^rd. Before the surgery, I could put away as much as a six pack a day if the need arose. Today I treat myself to one can of white Monster and/or one cup of coffee a day. It just depends on how I am feeling.
• I drink a lot more water than I used to, but it has to be ice cold. So I fill water bottles about 1/4 of the way full and freeze them.
• Eating is always an adventure. Food gets stuck daily and I am not a good date at a buffet.
• When I do eat out I ask for a to go container as soon as my food arrives and then plan on what I am going to take home.
• Our refrigerator is always stocked with leftovers. Stop by anytime, I can warm something up for you in a second or two.
• I haven’t had a salad since August 3^rd. 
• Sugar is not my friend.
• I can drink beer, Long Islands and wine which is nice. Two glasses in a sitting, sometimes I might stretch it to three (not the long islands though). I did play in a poker tournament recently where, for some reason, I thought it would be ok to have six beers and that did not work out so well for me.
• Earlier this year, another family member (my younger brother Doug) tested negative for the genetic mutation which is amazing news for him and his son. 

See there have been good days and bad days. There have been days that came with good news and days that came with bad news. It is the same as it is for everyone. It doesn’t matter whether you have a stomach or not. Now I didn’t think that hard to come up with that list, so I know that there is more. I just wanted to jot some of them down. You could do the same and your list may be longer with more trials than this list has on it. It is just life.

I guess this was just my way of saying, “I’m Good!”  Let’s start year two!

Pretty soon now you're gonna get older
Time may change me
But I can't trace time

I said that time may change me
But I can't trace time
(Changes   David Bowie)

"Are you sure this water's sanitary? It looks questionable to me." (Tarzan)

DESSERT.....
It has been just over four months since my surgery. By now I pretty much know what I can and cannot eat and the one thing that I can't eat that bothers me the most is dessert. In most cases there is just too much sugar in desserts for me and I end up in a dumping situation.

Sometimes though you just have to dive in and try even if the outcome looks questionable.

For example…

This past Saturday a neighbor brought over a couple of plates of homemade treats. Stuffed Rice Crispy bars is the best way to describe them. These things were layered rice crispy bars. They had additional marshmallow and caramel bits stuffed in the middle.  All of this was held together with additional melted marshmallow an caramel and then was topped off with more melted caramel. It really was sugar, wrapped in sugar, held together by sugar and topped with more sugar. All the warning signs that Roger should stay away.

Now rice crispy bars are one of my favorite treats. So I did what any other normal person would do. I devoured one. Yep full on attack to the point of licking the sticky caramel off of my fingers. Now in my defense, I didn’t eat a full one. Since I do not have a stomach that would not be the responsible thing to do. Too much sugar. So I tore the bars in half and handed the other half to my son-in-law Sam and said “here eat this”. So I only ate two halves. I don't think it counts as a full one then, The math gets a little fuzzy there. I will say that they were really good.

How did my body respond? Violently is the best way to describe it. Within a few minutes to be exact. And I knew, as I struggled to shove that last bit of heaven into my face, that eating them was not the best decision I had made that day. It would not end well. I didn’t care. For that brief moment in time while I engaged that tasty morsel in battle, I felt normal. It was worth it.

And don’t worry about the remaining rice crispy treats, Our oldest daughter’s birthday was this past weekend and they were her birthday treat. She took them home with her. If they would have remained at the house, then I would have had to continue to do battle with them until each and every one of them had been eliminated from tempting anyone else.

I was back down at Mayo on the 28^th for my third dilation and it went fine I guess. The opening had closed back to 9mm, which they were not happy about, but they were able to dilate it back to 15mm easily which they felt was encouraging. They would still like to be able to catch the stricture before it gets back down to 9mm, but they will not schedule a dilation unless they feel that a stricture has formed. So I do not know how we are going to get ahead of this if I have to wait until I have a problem before we can make an appointment. Kind of frustrating. 

We will just wait and see I guess. 

Welcome to 2016!

So something like a Swiss army knife That's my life

Frankenstein had nothing on this body of mine

The villagers still flockin' to see, to see me

Breaking free, breaking free

(School Boy Heart  Jimmy Buffett)