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)