I Like it When You're Here

The Odenettes: Aunt Connie, Me, Debbie and Mom

Last night I headed upstairs to get ready for bed and turned on the bedroom TV. Forrest Gump was on - right at the part when Jenny dies - right when Forrest says 'Mama always said, dying was part of life. I sure wish it wasn't.' The timing was... we'll say highly coincidental... Forrest Gump was my sister Debbie's favorite movie and today was the 3rd anniversary of Debbie's passing. 


I have always hated the month of February, the holidays are long over and the weather is usually so bad. Spring usually hasn't yet sprung and I have a hard time finding anything to look forward to. It was an awful blow to watch my sister struggle through February in 2009. There is no way to explain or describe to you what it is like to know that the end is coming for someone that you love with everything you are, that is such a part of your life that you're not sure how you or your family will ever be the same when they're gone. 


Towards the end it was hard for Debbie to express a thought clearly. She had to really marshal her energy both mentally and physically to get something out. The day before Debbie passed I was visiting with her and getting my things together to head home for the evening. I went by to give her a hug and kiss goodbye. I saw in her eyes that she was wanting to tell me something so I paused for a few seconds, not sure that she was going to be able to tell me what she wanted, but definitely wanting to hear what she might say. She gave me a small smile and said 'I like it when you're here'. It was like she had give me a gift of pure gold, and it was the last thing she said to me. 


So I watched those last few minutes of Forrest Gump last night and as the theme music was closing the movie, the same music that was used at Debbie's service, I went around the room touching everything I have from her. A necklace she wore, a dresser that was in both our rooms when we were kids that I now have, a teddy bear that sat in our Dad's childhood rocker in her home, and the last birthday card she gave me.


And to use another Forrest Gump quote, for now, 'that's all I have to say about that'.

It Doesn't Get Easier

I woke up this morning and started perusing Facebook on my mobile phone. The first status update I saw was from a friend that has been fighting thyroid cancer for many years. It appears that he has been told that there isn't anything more that can be done. 


It immediately took me back to hearing the same news for my sister. You know what it means, but it's so harsh and hard to hear. At one point when I was talking to my sister during this time and I started to cry. She looked at me in a concerned and worried way and said 'I thought we were used to this?'. But the truth is, there is never a point at which you get used to this no matter how many times you have been through it with family and friends. 


So I am thinking of my friend today and for many more days to come. He has been a source of strength as I have gone through my own journey. He has fought long and hard, in a way that I don't think I have the strength for. Believe me, training and doing an ironman is *nothing* compared to the constant grind of surgeries, scans, shots, chemo, radiation, and on and on that someone who is fighting cancer for years goes through. 


Much love and peace to you always JD.

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!