Thursday, December 29, 2011

My (Long) Story

The about me section doesn't give nearly enough space to explain the journey that has led me to do this blog. Here's the full scoop...

I was diagnosed with a genetic disorder, Multiple Endocrine Neoplasia Type 1 (MEN 1), at age 11 after my father passed away from metastatic pancreatic neuroendocrine tumors.  In 1988 I had a subtotal parathyroidectomy due to continued elevated calcium levels and kidney stones that showed up during ultrasound. All other tests pointed to normal pituitary and pancreas functions. 

Life went on very normally for the next 20 years. I had occasional blood test monitoring for MEN 1 every few years with different endocrinologists in the Atlanta area and I took my good health for granted. My calcium and PTH levels continued to be elevated but all other hormone levels were normal and other than some osteopenia I felt no other complications.

In July 2008 my sister was diagnosed with metastatic pancreatic neuroendocirne cancer. This was a shock to my entire family since Debbie didn't demonstrate the elevated calcium or PTH levels that I, or eventually, my brother did. We had thought that she had escaped the genetic disease and, unfortunately, we hadn't as a family taken advantage of the genetic tests that had become available since our childhoods. Debbie fought hard and, as she did throughout her life, she taught me a lot of lessons before she passed away in February 2009.  

Debbie's diagnosis was a wake up call that sent me searching for a doctor or facility that was familiar with MEN 1 and neuroendocrine cancer. I underwent testing at Mayo Clinic in Florida between September and December 2008 and was found to have new parathyroid tumors and several neuroendocrine tumors in my pancreas. I had a total parathyroidectomy and auto-transplant into my forearm in October 2008 and after a lot of thought on my part and advice from the staff at Mayo, I had a total pancreatectomy in December 2008.     

Since then I have returned to triathlon. It's been a big challenge as I have had to learn to train and compete again as the equivalent of a type 1 diabetic. Now I'm ready to take a stab at Ironman and am training to compete at IM Canada in August 2012.

So this blog will be about a lot of stuff... primarily I want to record my Ironman journey - that's for me more than anyone else and it will help me avoid posting all of it to Facebook. I don't think a good deal of my FB friends care whether I ran, bike, or swam that day and are hardly impressed. :)

But I also want to talk about what it's like to do this as a diabetic. What it's like to survive and be fundamentally altered by cancer. What it means to have a genetic disease that has so drastically affected me and my family. How I'm getting through the grief of losing my sister - I'm sometimes shocked that is still such a work in progress. Maybe some of that would be helpful to the reader - we'll see. 

Thanks for checking in!