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)