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Uncle John Chronic Lymphocytic Leukemia (CLL) Sharon Adenoid Cystic Carcinoma (AdCC) Uncle Jerry Essential Thrombocythemia (ET) |
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My name is Sharon Lane. I am the website author, webmaster, organizer, and general 'chief cook and bottle washer' of the Rare Cancer Alliance. I was diagnosed with Adenoid Cystic Carcinoma in 1998, a very rare form of cancer. I spent almost a year having surgeries and treatments and another year just trying to find my 'sea legs' again. I was definitely a ship without a rudder. I spent my time doing research, advocating for my cancer, and becoming immersed in the world of rare cancers. That is what eventually led me to develop this website and several others.
There were times, during my cancer journey, when I felt extremely fragile and child-like. It brought back warm childhood memories. When I was a little girl, I thought that there wasn't anybody in the world as wonderful as my three Uncles and my Grandpa. At times, I am still that little girl. The one who stood in the center of a circle, looking up at these very tall, handsome, loving men. I thought that life just couldn't get any better. I felt secure. I felt loved.
In 2002, while on a camping trip up the California coastline, I stopped to visit my Uncle Jerry and Aunt Jan. My Uncle had a doctor's appointment while I was there and came home with a bottle of medicine. He mentioned the name to me and my heart sank. I got a lump in my throat. You see, I knew what that medicine was for, because I had lived in the 'cancer world' for several years. When I spoke to him about it, he told me about his disease and about my Uncle John's cancer (a well kept secret).
I cried when I left my Uncle the next day; so intensely that I had to pull off the road. I cried for him, for my Uncle John, and for myself. I am much more dedicated to my advocacy. I have three very personal reasons to beat these diseases. My Uncle Jerry, jokingly, refers to us as the 'afflicted'. I call us Family.
If you want to read more of our stories, click on our name to the right of the picture. To read more about our diseases, click on the disease name.