Introduction

 

 

My name is Liddy. I'm 37 years old and have been diagnosed with Ewing's sarcoma for over a year and a half. I'm not one of the typical cases, in so many ways. My path thru treatment is far from standard also. Hopefully, you're on this page because you know me, or you were looking for information about Ewing's sarcoma. I have done a lot of information gathering, and would love to help others thru the data that is out there.

Why did I start a journal?  Well, in the beginning, Tom (my spouse) and I got so many calls from friends and family, and they all asked the same questions ("How are you doing today?" being the main question).  It seemed easiest to answer everyone at the same time, esp. in the beginning when it was difficult to talk about my diagnosis.

What can I tell you about myself? I have a PhD in computer science. I used to work for Bell Labs, which was my dream job.  Technical web page. I did storage systems research, which won't mean much to most people. I like working with data, determining what information can be pulling from data using standard and not-so-standard approaches. I'm now on long term disability which means that I will have to find another job once I'm out of treatment and I'm well. I thought that I would mind not working, but there are so many things to do while in treatment that I keep busy. One can read medical abstracts on the different treatments or take fatigue-combating naps. Plus, I have watched my basil grow.

One of the things that has been important to me is keeping my quality of life high. A reasonable metric to use for this for me is whether I'm biking. I was biking 2-3 hours a day before diagnosis, mostly as pain relief. But, I found that I could find some peace while on a bike. When I'm biking, I'm not a cancer patient, but one of those crazy people who spend thousands on a bike because it is 1 lb lighter than the previous model. (Actually, I have bought  most of my bikes used, but I still relate to those people.)

Sometimes during my treatment, I decided that I wanted to work on the list of things that I always to do. This included a few multi-day bike tours and some work with fund raising for a good cause. With the help of family and friends, we organized two bike tours, one in Louisiana which piggy-backed off of Cycle Zydeco, and one in Denmark. We called ourselves Team Sarcoma, and we were 8 riders strong for the Louisiana tour, and 30 strong for the Danish tour. Also, we organized virtual bike tours for the same days as the Danish tour, and had another 260+ riders cycling virtually, i.e., where ever they were during the days of the bike tour. These riders represented 17 states and 12 countries and rode over 8000 miles.  (Two more multi-day bike tours in 2004: Cycle Zydeco and a fall ride.)

Being in treatment can be very lonely. Only the patient knows what it is like to receive the chemo, have the doubts about treatment, etc. And, if you have a rare cancer, the isolation seems greater.  Write to me if you want. Contact the organizations that I have found helpful. But, most of all, don't let the treatment or the disease take over your life.

Get on your bike and ride; if you aren't into cycling, take the request figuratively. If you're a patient, your life is dramatically different, but you can still do life. 

Hope you enjoy my journal.

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Copyright 2003 The Shriver Family: Last modified: 01/06/04.