Triathlon

Today, August 20, 2001, was the Seattle "Danskin Triathlon"!!! 1/2 mile of swimming, 12.4 miles of biking & 3.1 miles of running. I finished it!!!!

I would never in my wildest dreams classify myself as an athlete. I have had two operations for bilateral ELST’s,¹ and one surgery on my right kidney. A group of people at my work began by walking several miles at lunchtime, and four of us competed in the Triathalon.

I have been training since February, and believe me I had lots of moments when I was ready to throw in the towel. My first practice swim I lost my balance. My first time out on the bike I ran into a wall and cried. The first time I tried to run a mile I had to stop and walk. In fact even yesterday when I lined up for the swim start and saw 4,500 women surrounding me I almost quit.

At first Dr. Jeff Kim at NIH advised against the swimming for fear I might get kicked in the head. For someone who has had a few surgeries on the head, that would not be a good thing! He offered to write a note for me, but I told him this was a competition, not a gym class! So instead I found a "swim angel" through a wonderful organization called TeamSurvivor, for physically challenged women who want to be physically active.² I explained the problem and asked if there were a volunteer who could assist me. My "swim angel" swam next to me and made sure I stayed on course, and away from the other participants so I wouldn't get kicked in the head. There is no doubt with 4,500 participants I would have had a few whacks in the head without her. I was in the second wave of 125 participants to kick off and swim the half mile. I stayed toward the back and side, with my swim angel watching out for me.

A year ago I couldn’t imagine myself biking 12.4 miles -- with my balance?? But through this six months of training my balance has definitely improved.

I can't even begin to describe how exciting it was to cross the finish line! It was the most thrilling moment I have ever experienced in my life.

I was so proud of myself that I wrote all my current and past doctors. Dr. Dan Choo replied, "I always think of you when people ask me the simple question ‘am I sick?’ Being diagnosed with VHL certainly does not mean that you are ill. Your vigorous lifestyle is a testament to that." Dr. Choo was one of the surgeons who removed my bilateral ELST's at the NIH. He is now at Children's Hospital Medical Center of Cincinnati.

As always, thank you to my VHL family for all your support and your "can do attitude". For me it took having VHL to realize I can do anything!!! It may require some modifications, but I can do it!!! I can’t wait to do it again next year.

1. Endolymphatic sac tumors (ELST’s) are tumors on the outer edge of the brain that can interfere with hearing and vestibular function (balance).

2. TeamSurvivor was originally founded to assist women who had survived breast cancer. It is now open to all women cancer survivors, including women with VHL. See their website at http://www.teamsurvivor.org

Photo by Brightoom, http://www.brightroom.com

mystory

As printed in the VHL Family Forum  9:3, September 2001.  For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

mystory