A Quick Update On A Short Stent....

They say that hindsight is always 20-20, and I guess that this should be the lesson I take from this little experience.

I have a stent in now. Not sure that I like it. It hurts a lot and I can feel it. I mean I can tell you exactly where it is sitting in my chest. Again, not sure that this is a good thing. It is too late now, and with everything that has happened since they put it in, I just need to tough it out until they remove in in a couple of months.

So I went to Mayo on Tuesday as scheduled. The stent was scheduled at 10:30 and was to be the second procedure I had that day. No appointments afterwards, so it was supposed to be an easy in an out and then head home.
The doctors started coming in around 11:30 so I know that my procedure was close. The doctor who was going to be doing the procedure told me that he was just putting the stent in, and that should have raised a red flag for me. You see I was told that they may just do a dilation it depended on the state of the stricture but now that was off the table,

I "woke" up and started throwing up almost right away and it stayed that way for a number of hours. I couldn't keep anything down and had problems standing without throwing up.
They told me that the first stent had migrated into my lower intestine and they had to go get it. They ended up using one of the largest stents they have and both sutured a clipped into place with clamps.
By six pm I was still in recovery and the decision was made to admit me once again to St. Mary's for an overnight stay. At one point in time they told me that they were going to send me home and Edie went to take things out to the car. By the time she returned the decision had changed and an ambulance was being summoned to take me to St. Mary's.

I did ask that the ambulance driver to give me some lights and sirens for the four block drive but he declined. Not even a whoop whoop.

So where am I now? I am back on a liquid diet for a few days and then on a soft diet for a few weeks. I will most likely not be able to enjoy a steak, or and heavy foods until after the stent comes out. I am struggling drinking anything even slightly carbonated again as the back up causes pain and what i drink gets thrown up.
I also need to go back to have x-rays of the stent every week until they remove it. The problem lies with the stent and if it were to come loose and migrate down my intestines again. Without someone around to go get the stent, or one of the clips, it could be really bad for me. So again why did I do this?

As far as going back to work goes, well today I got up, got ready for work, and threw up.

I will try again tomorrow.

You used to think that it was so easy
You used to say that it was so easy
But you're trying, you're trying now
Another year and then you'd be happy
Just one more year and then you'd be happy
(Bakers Street   Gerry Rafferty)

"You rush a Miracle Man, you get rotten miracles." Miracle Max (Billy Crystal)

Remember the scene from the Princess Bride where Miracle Max's wife asks him if he thinks the miracle pill will work? His reply was "it will take a miracle." Well, that's how I feel right now and I honestly believe that they are making this up as they go along.

Update from yesterday...

I spent most of the day at the Mayo Clinic again. I wish I could say that it was all in appointments and we were able to get this situation corrected, but that was not to be. One appointment at 10:15 and the next at 1:30, and a lot of down time in between. The good news here is that we found out that some friends of our were also at Mayo and we were able to connect up with them. So thank you Michelle and Jeff for coming over to the Gonda building to spend some time with us. It was great to see you both again.

The morning appointment was to have X-rays taken. The appointment didn't take that long, but it was eventful to say the least. I had to drink this white powdery liquid called barium. Here is how the conversation with the X-ray tech went to the best of my recollection.

X-Ray tech: "You need to drink the barium when we tell you and we will watch it as goes down to your stomach".
Me. "I don't have a stomach."
X-Ray tech. "yea that's right, it should still work." (REALLY?)
A little later....
X-Ray tech. "I need you to roll onto your stomach and drink some more."
Me. "I don't have a stomach."
X-Ray tech. "You know what I mean."
Me. "I do, but since I do not have a stomach and the flaps that hold stuff down, if I roll on my stomach I will throw up all the barium you have had me drink."
X-Ray tech. "I still need you to try."
Me. "OK." (That's me being cooperative.)
Me. (After rolling on my stomach) "I'm need something I am going to throw up"
Me. (after throwing up, as I hand the container back to the X-Ray tech.) "Here, it is probably still good. Use it with your next patient". (That's me trying to be funny)
X-Ray tech. "We would never do that." (He so missed the joke.)
X-Ray tech. "We are going to try a barium pill, Here swallow this and we will watch it go down."
Me. "OK"
X-Ray tech. (and these were his exact words). "Shit, it got stuck"
X-Ray tech. "This is important, You can not lie down or take a nap for two hours. The pill will just dissolve on it's own in your stomach."
Me. "I don't have a stomach."
X-Ray tech. "I know, but it is the same thing. It will dissolve and you will be fine, However if you feel groggy and need to lie down please flag down one of the volunteers. Have them page us and someone will come get you."
Me. "What the hell did you just have me swallow."
X-Ray tech."You will be fine, we are done now."

Later in the afternoon when we met with Dr. Kendrick I told him about the pill getting stuck. One of his minions piped in and said "Well, they went down and removed it didn't they?". To which I replied 'NO" and the minion said "WHAT?" To which Dr. Kendrick responds, calmly I might add, "Its been a few hours you are fine."  What the hell did they give me?

The meeting with Dr. Kendrick was about options. After reviewing the x-rays we came to the conclusion that there are three options available to me. Number one keep going with the dilations and hope one of them holds. Number two put in a stent. And third, redo the surgery, cut the scared section out and try again.
Well I can tell you that option number three was removed from the table fairly fast. It is still an option especially if options one and two do not keep the strictures from reforming. But we are not going to be talking about that anytime soon.

So I head back down to Mayo on Tuesday. They are going to put me under again and do yet another endoscopy (number eight for those of you keeping score). It is as that point when the decision will be made on what option (dilation or stent) they will use. In other words, lets put Roger back under and we will make it up as we go.

So here we go again or in the words of Miracle Max..  "Have fun storming the castle!"

The moment is a masterpiece,
The weight of indecision's in the air
Standing there, the symbol and the sum of all that's me
It's just a travesty, Towering, blocking out the light and blinding me
I want to see
(The Wall  Kansas)

Change

I posted this quote on my Facebook page a few weeks ago. It was written by Samuel Decker Thompson “ We are all just a car crash, a diagnosis, and unexpected phone call, a new found love, or a broken heart away from becoming a completely different person."

It was a year ago today (February 9^th ) that I received the news that I had tested positive for the CDH1 genetic mutation. After hearing the news, if you remember, I walked out. I didn't go far. I just went outside of the cancer center in Maple Grove and sat on a bench to try to gather myself. When I look back on the day, sitting on that bench, I can tell you that you second guess everything. You fret how this news was going to change everything. How these results would mess up everything you had planned. How everything was going to be different. Now a year later I can tell you that things did change a lot, but in the end I changed less from test results or the surgery and more from events outside of this diagnosis.

You see, I have been there as friends and loved ones buried family members, and I changed. I have been there as our friends and family have fought with disease and I changed. I was there as friends and family struggled with job loss and job changes, and I changed. Since that day friends have moved away and I have met new friends, and I changed. I have lived, loved, laughed, cried, forgiven, rekindled and strengthen friendships and I changed. All of these changes were more dramatic than anything that has happened to me since I was given the label as being a CDH1 genetic mutation carrier.

Then there was this weekend.

This past weekend our oldest daughter let us know that she and her husband would be moving from Spirit Lake Iowa to Greensboro North Carolina. They will be doing it this coming Friday. They will go from being just three hours away from us to being closer to 24 hours away. More change. All of the plans we had as parents and future grandparents changed. From wanting to be hands on to being remote.

Change…

With that change comes the feeling of loss as you watch them spread their wings and fly away.
The feeling of pride and hopefulness, all the while you pray that your years of guidance and encouragement will help see them through.

In your heart you know that they will do great and they will be just fine.
You prepared them for this.

You just didn’t prepare yourself for it.

And you change…. 

And as we all play parts of tomorrow,

some ways will work and other ways we'll play.

But I know we all can't stay here forever,

so I want to write my words on the face of today.

(Change  Blind Melon)

0-100 in 6 words.

I was groggy from the anesthesia and really just wanted to close my eyes and sleep some more when the nurse said the six words that snapped me awake immediately.

"They didn't put the stent in." was all she said.

I was immediately awake and pissed off. "What the hell do you mean they didn't put the stent in. Everything I went through today was done so that they could put the stent in and I would be done with dilations. Now you tell me they didn't do it? What in hell did they do for the hour I was under?"

"They did another dilation, but you will need to talk with the doctor" was all she said and she left the room.

It took another 45 minutes to meet with the doctor. His explanation was that he did not have a stent big enough to positively secure it in my esophagus. Since I had a dilation last week the opening had not closed enough to warrant a stent. If the stent was not secure it could come loose and end up in my small intestine where they would have to go in and get it, which would be bad. So they did another dilation. He told me that if a stricture happens again they will immediately go in a put the stent in.

Now to try to keep that from happening they cut me. That is they cut the scar tissue causing the stricture in multiple locations and then stretched it during the dilation. They were able to get the opening to 18mm after cutting it and they hope that it will remain at that size from now on. The doctor thinks that there is good chance that it will hold. But he can't guarantee anything. They only way to tell is if another stricture forms.
So we are back to waiting..

The really sucky part of today:
I am back on antibiotics again.
I am back on a liquid diet, nothing more than jello and broth for a few days.
Once that is done I can add things like mashed potatoes and gravy.
I am still loosing weight and this new "plan" is not going to help.

Here comes the rain again
Falling on my head like a memory
Falling on my head like a new emotion
(Here Comes The Rain Again   Eurythmics)

 
 

hurmuph!

The Weather report for today (Feb 2 2016)

• Winter Storm Warning for Rochester Minnesota with an expected 8-10" of snow expected between today and tomorrow. 
• Blizzard Warning for just west of Rochester with a foot of new snow expected. 30-40 MPH winds expected. 
• Winter Weather advisory for Minneapolis 6-8" inches of new snow expected over the next 24 hours.

Why is this important to know. I need to be in Rochester by 9:00 tomorrow morning to have the stent put in. They have gone out of their way to get one of their top surgeons to do the procedure and it is tomorrow or March 8th.
I wont make it to the 8th without another stricture forming so I cant wait.

So we will be driving down tonight in the midst of this wonderful winter wondercrap. We have reservations at a hotel close to St. Mary;s Hospital where the procedure is being done. The Envoy will be loaded with everything we need and the 4 wheel drive will be locked in.

It is said that snow before Christmas is beautiful and makes the holidays more festive. I understand that. Snow after the first of the year is just a pain in the butt.

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)