A Request.

First off I want to say thank you for all of the well wishes and prayers of support I received since posting my decision. I really appreciated each one, so thank you.

The surgery is set for August 4^th at the Mayo Clinic. 
The surgery is set out that far due to some events that we already have planned for the summer and that I wanted a specific surgeon to do the operation.  Dr. Kendrick, the surgeon who did Mel’s surgery, will also be doing mine.  He is one of only 4 surgeons in the US that can do this procedure laparoscopically. Doing the procedure this way reduces my healing time and does not require me to have a feeding tube. For this type of procedure he will be making five incisions, about two inches or so in length, and then removes my stomach through the incisions. They will not be replacing my stomach, they will be attaching my small intestine directly to my esophagus.  
Now I know what you may be thinking and I am right there with you.  I told Dr. Kendrick that there is NO way he is getting my stomach out through one of those two inch incisions. Maybe if he connected all 5 incision together then he’d have a fighting chance. Yet, he assures me he can do it and I just need to trust him.  We will see I guess, but I just don’t see it coming out in one piece.  Maybe if I had skipped a couple of beers when I was younger....Nah..  Good Luck Doc! 

So where is my request? Here it is. As with any major surgery, you do not know how your body is going to respond until after the operation. You get the percentages from the Doctors based on their experiences, but everyone is different and every surgery is different. So, if it is not too much to ask, please include my Sister Melanie King in your thoughts and prayers. She has had to go through some pretty tough times over the past year. She was the first to learn about the CDH-1 mutation. She was also the first in our family to have to make this hard decision and the first to have the operation. She has been going through some tough times recently and spent most of this past week back down at Mayo. She could really use some warm and fuzzies thrown her way. Thank you.

Love you Mel!

A decision...

My decision. 
I have made the decision to have the surgery to remove my stomach. 

Doctors at both the Mayo Clinic and University of Minnesota have recommended this procedure based recent test results conducted at the Mayo Clinic.  They also took into consideration my health, my family’s history with cancer, and the fact that I have the CDH-1 gene mutation.  Based on what they see, I should have no problem recovering from the surgery and adjusting to my new life without a stomach.   I have also spent time reviewing information I received from both the Harvard and Stanford medical schools.  The information provided more insight into the gene mutation and what they know about it, however my options still remain the same, ignore it, check it, or remove it.  The fourth option I was looking for is not there.  

There is testing going on a new procedure that could test for stomach cancer before it advances to stage IV, however it is still being tested and is years away from being approved for use in this situation.  Even if this new procedure was approved it only helps with detection, and at that point in time when cancer is detected, you would still need to have your stomach removed to survive.  So with the risk that I have to develop this type of cancer, I see no point in waiting.   I could go on and continue to go through all of the different reasons on how I came to this decision, however in the end it comes down to what I am willing to give up to live without this particular risk.  I may decide to write about them at a later point, but as of today it’s not really all that important.   Today I will take what is available to me now and continue on with my life.

So we will be setting up the surgery later this summer at the Mayo Clinic.  The surgery (total Gastrectomy) is not a new procedure and has been done successfully for years.  It was the leading way to deal with bleeding ulcers prior to 1980.  I will be using the same surgical team that did my sister Melanie’s procedure.  Once completed there will be a team put in place to help me adjust to my new life.  I have every expectation that I will live a long healthy live without my stomach.  I am also working with genetic councilors to gather information about further genetic testing that, once my kids start having kids, will provide them with a way to protect their kids from having this gene.  My goal is to stamp this gene mutation out of our family.  I intend to look under every rock and in every nook and cranny to find the solution. 

I know that I am making a decision based on a chance that I will get this type of cancer.  I know that there are still many ways to die and when my time comes, it comes, however cancer took my father when he was only 62 and I will be damned if I am just going to sit back and give cancer a chance to take me.   I also know that as hard as the recovery may be, it is all for the better.  I will have a life without the fear or risk of getting this cancer and a chance to be an important part of my kid’s lives for years to come. 
 
“The line it is drawn, the curse it is cast
The slow one now will later be fast
As the present now will later be past.”
(The times they are a-changin.  Bob Dylan)

Can I get extra Mayo on that please....

A quick update on my Mayo Clinic visit. 

Day one consisted of meeting with part of Dr. Kendrick’s team.   The one question that the team there asked that the University of Minnesota did not ask, was “what would you like to do about this situation?”.   You would think it would be an obvious question, but it’s not.   For the most part I heard a lot of the same information and we had  similar conversations that were had at the U, but that one question sticks out as a really important question.   I guess that it still goes back to the fact that I am not sick.  We ended up spending somewhere between 2-3 hours with the team exchanging notes and asking each other questions before I was sent for my lab work. 

Lab work = blood draw, and I must have given up a gallon of blood that day.

Day two was the endoscopy and the almost colonoscopy.  I was originally scheduled to have both procedures, however I had just had a colonoscopy last year as part of a yearly checkup.  I really did not want to go through another one of them this soon.  Now the procedure itself is a breeze.  I slept right through the last one, not a problem.  I just wasn’t looking forward to the “cleansing” part of it in a hotel room.  So I had my records sent down and they agreed that the endoscopy was the only one needed.

Well somewhere between Dr. Kendrick’s team and the pre-op team that information got lost and they still had me scheduled for the colonoscopy.  It was good that Edie was there and caught it, or there could have been serious issues.  Now I would have been out, so I would not have been the issue.  However, unless a long island tea the night before counts as “cleansing”, there could have been a problem.   Once that issue was cleared up we were good to go, however we didn’t go anywhere for a while.  There were complications in the two procedures before me and I did not actually get into the procedure room until 3 hours later.    My procedure went fine and last a whole 8 minutes I am told.   And I did check with the team in the room to make sure that they knew what procedure was supposed to be done and especially that they used the correct scope. 

I go back down on April 9^th to meet with Dr. Kendrick.  They are reviewing my family history, and the results from a battery of test that they put me through.  So I should have a recommendation on how they think I should proceed at time. 

“These are the seasons of emotion,

and like the winds, they rise and fall.”
The Rain Song… Led Zeppelin