| In 1999, I was diagnosed with fibrosing mediastinitis-a disease that grows fibrous tumors in major veins and arteries. I have a baseball sized tumor in my superior vena cava and my right pulmonary arteries have been blocked off so that my right lung was pretty much gone when they discovered what the disease was. It's a rare disease, with not much known about treatment or prognosis. My doctor at Vanderbilt calls me a pioneer. Great. I am one that says so what. It only strengthened my resolve to check all the things off my life list.
Over the years I've been through many phases of living with this disease. At first, the head of research on this disease at Vanderbilt University told me to write a will and papers saying who would get my kids, they were 7,8,12, and 16 at the time. There were 7 of us known to have the disease, four died within two years. I prayed, and miracles happened. I have a baseball sized tumor that has grown through my superior vena cava, tumors have stopped blood flow to my right lung, and they float around in my left lung, but never attached to anything. I have 5 or 6 stents in my svc to hold it open- they do a great job! There were times that I thought I might die, but the body is an amazing machine and as long as I kept running, it kept adapting. I run to feel better. It works for me. I think that everyone would be better off if they would run more. Too many people with tough diagnoses, and those without, are just waiting to die, every day. They just stare it in the face and watch it approach, while life passes them by. I just keep running, and ignore it.
Eleven years now after my diagnosis, my kids are 18, 19, 23, and 27. I referee high school basketball, baseball, and volleyball and I'm getting my masters degree to coach college softball. Like I already told you, I was captain of my roller derby team last year. I'm in better shape than most of the people I know, including many that are half my age, (all with two lungs), I'm not afraid of much of anything, and the colors of everyday life are brilliant. It Sounds like you are much like this also.
I hope the women who are touched through the Athena Project will find, as I have, that the disease gives back what it takes. In my case, I have received much more than the disease can ever take from me. It's a good place to be.
I look forward to the trek and to meeting you and the other women who have the courage to keep living rich and wonderful lives. When you have time please let me know my next step.
Event: Grand Canyon R2R2R2 |
