Four days on Clown Island... Event #2

When I was around 8 years old my dad took the family camping in the Boundary Waters Canoe Area. I know that we camped on an island on Saginaw Lake, but for the most part my memories of the trip end with a fishing pole and a metal minnow bucket full of holiday soda being lost to the depths of the lake. Now 45 years later, I had made the decision to delay my surgery for a second journey. As a 50^th birthday present to my wife, Edie, I would take part of my family, return to the BWCA and spend four days camped on an island. Where we would fish and relax before our lives change on August 4^th. 

This was a trip that Edie and I had talked about taking for years and for both of us had placed it on our bucket lists. So this past weekend eight of us took off to spend a long weekend on Lake Isabella some 35 miles Southwest of Ely, Minnesota. Accompanying Edie and I on this trip would be our daughter Jen, her husband Sam and some friends from my hometown of Princeton who I talked into keeping us alive. Thankfully these friends have experience in the BWCA and successfully got us greenhorns in and out in one piece. Seriously though, without them this trip would not have happened.
 

So to Chris, Sheila, Rodney and Barb.  Thank you.
 

We chose Lake Isabella due to the fact that it was a short portage (about 80 rod, or 1/4 miles) from our cars and only about a mile or so canoe paddle out to the islands. We set up camp on “Clown Island”. OK, it’s not officially named Clown Island, I just kind of made that up. You see at the front of the island there was a rock formation that served as an entry point to the lake. The rock was pocked marked from centuries of wind and weather abuse. Once the rock got wet and started to dry, a laughing clown face could be easily seen on the rock. If have a fear of clowns then this image is not one you would want to see staring at you every day. And yes, every day we checked  to see if the face was still there or had it moved. You know how clowns can be!

The four days up there flew by. We explored, fished, and relaxed. We dodge mayflies, mosquitoes and raindrops the size of potatoes.  We watched as some of the ugliest bugs you have ever seen crawl out of the water and morph into amazing brilliantly colored dragonflies. We tipped a canoe and lost a bait caster, only to our resident fishing pole finder, Chris, find it again.  We tried lure after lure to catch fish, and since there were rocks all around, we lost lure after lure. Still in the end we caught enough Northern and Walleye to have a nice fish fry. For this brief time the eight of us were one group out of 4 on the entire 1500 acre lake. Instead we shared it with Bald Eagles, Vultures, and some bird who’s call sounded like the Mockingjay call out of the Hunger Games. Peaceful and relaxing, just like we thought it would be.

 

We had great weather on Friday but caught some rain on Saturday. The Saturday break gave a chance for a few of us to sneak into Ely for a Burger and a Long Island. Sunday was amazing and we spent most of the day fishing and exploring the inlets and rivers on Isabelle. We had our fish fry on Sunday night and were treated to an spectacular sunset. We left on Monday during a massive downpour, but in the end we all made it out. A little wetter than we had hoped, but alive and planning what we will bring in next time we go.

For me going to the Boundary Waters was more important to me than any food tour I could do. Don’t get me wrong, I love to eat and I do it well. However, the BWCA trip was something I was planning before I knew about this CDH-1 mutation so I needed to see if through. I wish that I could go back there again before the surgery, but there just isn’t going to be enough time.  I can tell you this though, sometime after August 4^th, when my body allows it; I will go back.

Event #3.  Valleyfair (date: TBD).  I want to feel the bottom fall out of my stomach on a roller coaster one last time.

Bouncin on a bubble full of trouble in the summer sun
Keep your raft from the river boat
Fiction over fact always gets my vote
And wrinkles only go where the smiles have been
(Barefoot Children In the Rain   Jimmy Buffett)

Just a quick update.

The surgery is now officially on the books.

When we met with Dr. Kendrick and his team they told me that he only scheduled his surgery calendar out 60 days. So we couldn’t “officially” lock down the surgery date at that time. His assistant also explained that he only operates on certain days so we needed to coordinate the day we wanted to have the surgery with the days he does surgery. From what they could see it looked fine, however we needed to lock the date down as soon as his August calendar opened on June 1^st. They did place a note in his schedule to put me on the calendar, but I needed to call them to confirm.  

Now I have a messenger bag that has all of my health related information in it. It includes all of the phone numbers for the Mayo Clinic. I have been carrying that bag back and forth from my office for a couple of weeks just so I could make that call. I can’t explain why, but this call was a lot harder call to make than it should have been. June 1^st came and went and I couldn’t make the call. In fact I didn’t actually make the call until just a few days ago. Maybe if I didn’t set the surgery, then it might not need to happen. One could only hope.  UUGGHHH! 

It is done now and the surgery is now officially on the books for August 4^th at St. Mary’s Hospital in Rochester.    

You live in a world of illusion
Where everything's peaches and cream
We all face a scarlet conclusion
But we spend our time in a dream

(Jungle Love   Steve Miller Band)

Sharing the knowledge

I have been talking about having this CDH-1 genetic mutation, but never really told anyone what it was.  So if you are interested in my understanding of what is going on then read on.

So what is this genetic mutation? 

To understand this you need to know about the CDH-1gene. Everyone has two copies of the CDH-1gene.  According to the “Genetics Home Reference” website, the CDH-1 gene provides the protein that surrounds the membrane of certain cells (http://ghr.nlm.nih.gov/gene/CDH1). The function of this protein, or E-Cadherin as it is called, is to help neighboring cells stick together to form organized tissues.  It tells the cells where they can go and cannot go.  Now for this to work properly the genetic coding within the CDH-1 gene needs to be complete. 

At some point in time, in my family’s history, one of the CDH-1genes being passed down on my Mom’s side of the family changed.  From what I understand, part of the genetic structure of the CDH-1 gene is missing.  There is no way to know what happened to it or even when it happened.  We just know that it's not there and could potentially play havoc with my life. It is like putting together a puzzle and getting to the end and there are pieces missing.  My genetic puzzle is just not all there (Yea I know, you all knew that). 

When you are conceived you inherit two of these CDH-1 genes; one from each parent.  Which gene you get is a tossup, it just depends on which gene is more dominant at that particular time. Then, if you have the CDH-1 gene mutation, you have one good gene and one mutated gene. When you have children, you pass one of the two CDH-1 genes to your children and it is literally a coin flip as to which one you pass on. The good news in all of this is that now we know about it.  We can look for it, test for it, and manage it before it has a chance to erupt into a deadly cancer that wipes out part of our family.

One other thing you should know.  The decision to remove my stomach came after it was discovered that I may have Barrett’s Esophagus. Barrett’s is a condition where the lining of your esophagus is being eaten away by the acids in your stomach. Barrett’s usually occurs after years of prolonged acid reflux. It was found during the endoscopy at Mayo. The area of concern is right where the esophagus is connected to my stomach. In a number of cases this can be pre-cancerous. This news was really the last straw with this whole stomach thing. This area will just need to leave with the rest of the stomach. They had planned to take that area of the esophagus out anyway. The doctors at Mayo are not too worried about it worsening so there is no need for any further precautions or testing. Right now I still feel fine and my assumption is that I will continue to feel fine up to my August 4^th surgery. 

On a lighter note, we are in the final planning stages of event #2.  Boundary Waters! 

I firmly believe that I didn't need anyone but me
I sincerely thought I was so complete
Look how wrong you can be

(Every picture tells a story   Rod Stewart)

Hey, Cameron. You realize if we played by the rules right now we'd be in gym? Ferris Bueller

Remember when I said that we had to set the surgery out to August 4^th due to some events that were already on the calendar?
Well here is Event #1!     May 27^th 12:10 PM.  Minnesota Twins VS Boston Red Sox. 

The sun is supposed to be shining for the first time this week and The Twins are playing the final game of the three game series!  Oh yea, and I am not at work.  Don’t get me wrong I love my job, but just not today.  A couple of Co-workers and I decided to take a page from Ferris Bueller, play a little hooky and take in a game.  

Mayo Clinic has been sending me recaps of every appointment I had down there in complete detail.  You know what?  At least for today, it doesn’t matter.  I will worry about that later.

 

Today’s agenda; Cowboy Jacks for a cold beer and then across the street for the game.  Once at the game, then few beers, a couple of dogs and a lot more sun.  

Happy Hump Day Everyone!  Come on Twins, lets sweep these Sox!

Take me out to the ball game,
Take me out with the crowd.
Buy me some peanuts and cracker jack,
I don't care if I never get back

(Take me out to the ballgame  Jack Norworth)  

My message to Dad

Hey Dad

21 years ago, cancer took you from us.  I really wish I could talk to you today, but I can’t so I will write this in hopes that somehow God has an internet connection up there that you can tap into.  These are the times where I wish I could just pick up the phone and hear your voice. 

First off, I hope wherever you are, you are enjoying yourself.  Maybe listening to some old Marty Robbins while fishing somewhere.  Heck, maybe old Marty Robbins is fishing with you.  Who knows.  I just hope that you are having a good time.  You would be amazed at how things are going down here.  You have grandkids running all over the place and even some of the grandkids have kids now.  We still hunt, fish, and work on cars just like you taught us.    

The kids have grown into amazing young adults.  Jennifer is married and living in Iowa.  Jackson serves our country in the National Guard and works part-time at a couple of jobs while he tries to discover his career calling.  Madelin is just finishing her Junior year in high school.  I know you never met her, but you would have loved her.  It is amazing how on certain days one of the kids will spin around to say something and I will catch that twinkle in their eyes.  That same one you used to get before you were going to tell a joke.  I can see you in their eyes. 

Cancer reared its ugly head in our family again and we continue to battle.  I am sure that cancer didn't know what it was getting into when it showed up this time.  We have discovered a gene that causes a particular style of cancer.   Mom, Mel and I have tested positive for it.  Don’t worry about us, we are taking the steps to make sure that we are not going anywhere anytime soon.  Mel had the surgery to remove her risk in January and I will follow suit in August.  We will be fine, you raised us not to give up and to fight for what we want.  

I could write more, but I just wanted to say Hi.  I have a good job, a place to live and a great family who keep me grounded.  The only thing missing is you.  21 years is a heck of a long time…. 

I miss you Dad…

Roger

And the pages of my life just keep on turning,
The way you always told me they would do.
There's lessons in this life that I'm still learning,
Oh I wish I was a little more like you.
(Dad    Skip Ewing)

My Birthday

Tomorrow, May 13^th, is my birthday.  I turn 53.   So after another year, what do I know? 

I know that this past year has been a challenging one for our family.  Yet I am amazed on how strong we have emerged.  We have been knocked down, but have gotten back up.   We have had loss, but have not let it defeat us.  We have been there as friends and family buried loved ones and yet we have never given up on the adventure that is life.  I have sat back in amazement as my little sister shows the rest of our family what true strength is.   We come from a family of warriors. Yes we sometimes fight and do stupid things, but at the end we will stick together no matter what. 

I know that  I am stronger than I have ever been.  I still have my days of doubts, but I know what I am going to do and in the long run all will be well. I also know that no matter how tough the rest of this year may be, it will not get the best of me.  I have a great family that is supportive of my decision (maybe not the squirrels).  I have two great jobs and am surrounded with strangely wonderful co-workers who keep me busy.  I know that at the end of this all; all will be well.

I have been asked to share my journey on the “No stomach for stomach cancer” website.   One of the great benefits of the site is that is allows people, who share this genetic mutation, a place to connect with others and learn about their options.  So soon my smiling mug will be on the site as a link to this blog for all to read.  I guess I will need to get a little better at writing these things.. 

As you step out in the night take a lesson from the trees
Watch the way they learn to bend with each breeze
Every time you make it through It's another little victory
Day by day minute by minute
Little victories

(Little Victories.  Bob Seger)

All right, you win. You win. I give. I'll say it. I'll say it. I'll say it. DESTINY! DESTINY! NO ESCAPING THAT FOR ME! DESTINY! DESTINY! NO ESCAPING THAT FOR ME! Dr. Fredrick Frankenstein

90 days. 
2160 hours.                                   
That is what I have left before I have my surgery.   

I have come to realize that, even on the days when I second guess my decision, the decision to remove my stomach is the only option I really had.  So the quote from the movie “Young Frankenstein” is appropriate.  In the movie, Gene Wilder’s character, Dr. Frankenstein, has done everything he can to change his identity from that of his Grandfather, Baron Victor Frankenstein, the mad Doctor who created the first monster.  In the end though it is in his DNA.  He is genetically destined to continue to carry on his Grandfather’s footsteps.  Genetics…

So here we sit, my sister Melanie, my Mom and myself, all with this genetic code buried deep within us.  Our Frankenstein monster just waiting to rear its ugly head.  All three of us carrying on the legacy from generations past.  Will it even show itself?  If it does, then in what form?  DESTINY, DESTINY….  You get the drift.

I also realize that as strange as this is to me on days, it must also sound pretty strange to you all.  The question I get the most is “can you live without your stomach?”.  I can and I will.  There will be some stuff that will need to come off my menu for a time.  Some of my favorite foods like prime rib and pizza will be the first to leave.  The pizza light at Roger’s Pizza Kitchen will be dark for a while.  However, the Doctors assure me that over time I should be able to eat all my favorite foods again.  It will just be in smaller portions.  Then there is beer.  Yes, I will drink beer again, someday.  Most likely sooner than the Doctors want me to, but the beer drinking gene, like the CDH-1 gene, is buried deep within my genetic makeup. 

So I am 90 days out.  Did I do anything to mark the date? Nope, May 6^th was just another day for me.  I guess I did write this blog, but there is no 90 day count down on a calendar.  No start of a food pilgrimage that would have me eat my way around the Twin Cities.  I did go out and by a Ninja juicer that I will need after the surgery.  I brought it home and couldn’t open it.  It just sat on the floor.

I spent some time on the phone this week with the founder of the “No Stomach for Stomach Cancer” organization.  The foundation is dedicated to the fight against stomach cancer and the support for people with the CDH-1 gene mutation.   There are stories on their website of folks just like me with the CDH-1 gene mutation.   What they have gone through and how their lives have changed.  There are also stories of people who found out about the CDH-1 mutation only after stomach cancer had been discovered.  In too many cases these stories only go on for a short time before they end.  Yet, all the stores are full of life and hope.  These stories reassure me that I am making the right decision.

The surgery is set for Tuesday August 4^th.   I need to be down to Mayo sometime on Monday 3^rd.   I will most likely be in the hospital 4-5 days.  After that I will be out of work for about six to eight weeks depending on how I heal and adapt to my new lifestyle. 

HOWEVER, on August 1^st Hanover is holding its annual Hanover Harvest Festival.  Food, Beer, Bands, and Fireworks.  Since it is the final weekend before my surgery, we are thinking of having one last blast to send my stomach off in style.  If we do, will you join us?  Let me know..

Maybe we will find a way to throw Young Frankenstein a wall or something and have a mass showing.  It is a fabulous movie. 

I'm friends with the monster that's under my bed
Get along with the voices inside of my head
You're trying to save me, stop holding your breath
And you think I'm crazy, yeah, you think I'm crazy

(The Monster.  Eminem)