I am not sure… I learned that my mother had cancer in November of 1983 a couple of days before her 42nd birthday. It was several years later that I realized it was a sarcoma cancer.
What kind of sarcoma was your mom diagnosed with?
My mother was diagnosed with Leiomyosarcoma. She was told it started in the wall of her uterus and metastasized by her hysterectomy.
Where and how did you seek information about sarcomas?
First of all, there was no internet in 1983. My mother had been school teacher, extremely bright, well educated, curious and was always engaged in researching her interests. She was extremely active in our church and had hundreds of friends. She and her husband, my step father, were a good team. He was a good advocate for her, and a good care taker. She talked to others about their cancer, she was highly communicative with her surgeon, oncologist, pathologists, nurses, other patients…as she put it “she made friends with her cancer”. She learned everything she could about it.
I remember having a conversation with her about her cancer after a doctors appointment. Her doctors loved her because she was smart, funny and had a life-affirming attitude. She had a positivity and a spiritual faith that helped them do their job and kept the boundaries more distinct. They felt they could communicate their ideas, suspicions, thoughts and musings with her honestly, without being held responsible if they didn’t turn out to be absolutely correct. I asked her why “they” hadn’t found the cancer when she had been examined so many times during her late thirties, early forties. She had been in tremendous pain for years. She explained that “the sarcoma she had was so rare they should have taken 40,000 cells instead of 20,000 cells to have discovered it.” I know that sounds strange, it was strange writing it just now, but that is what she said about 9 years down the road of her 15 year journey with leiomyosarcoma and that is when I learned she had a sarcoma.
How have the resources you use for information evolved?
After my mother’s death, I got involved with several groups. Mainly, The National Breast Cancer Coalition Fund. I was introduced to it’s founder and president, Fran Visco and was thrilled by the multi pronged work she was doing as a grassroots advocate for women’s health issues. I testified for Congress with her and lobbied with her. Unlike sarcoma, it is amazing that literally everyone you talk to in Washington or anywhere has a person in their life dealing with breast cancer. Because of the comparative rarity of sarcoma it’s harder to get those funds and make that progress with research, and ultimately find preventative measures and cures. The NBCCF is a coalition and works with the medical community, the government, ( Fran Visco was on Bill Clinton’s three member cancer panel) and multitudes of women’s ( and men’s) support groups raising awareness, raising funds and finding cures. Fran had been diagnosed with breast cancer in the late eighties and was appalled at the absolute lack of any progress in the treatment, prevention or detection of this raging killer of 1 in 8 women since the 1950’s. One of the first major triumphs of the NBCC was working with Dennis Slamen and the National Alliance of Doctors to find herceptin, a drug that has been successful in curing breast cancer or significantly prolonging life for women who have the hercept gene.
To get back to your question… The first time I ever thought to go online for medical reasons was when I heard Fran say that “the NBCC has position papers on many issues around women’s health and a 20 step guide to what to do if you are diagnosed with breast cancer.” This felt proactive to me. After feeling so helpless watching my mother literally fight so hard, for so long, with no such organization, support or focused, correct information all in one place.
What was your experience caring for your mother like?
Well, it was a lot different then than it would be now. I was twenty two and had just moved to NYC from Texas. My mom didn’t want to slow me down. She didn’t want to slow HER down! She was a typical Texan. She was independent, stubborn and smart. As her sarcoma progressed I took care care of her more and more as did everyone in our family. It was an honor to help my mom and it sucked.
Can you describe your first Wendy Walk experience?
I was floored to meet this family who was fighting tooth and nail to establish the kind of information, support, funds-for-research organization that Fran Visco has with the National Breast Cancer Coalition Fund. It felt very much like that! Energized, looking for answers, determined to change the detection, treatment and prevention of sarcoma.
I know there are other organizations that have worked hard to do this too. I have been a part of them and admire them. I think because this is what Wendy’s husband and kids chose to do for her, I relate so personally to this organization and the Wendy Walk experience. They have lived it. They know what people with Sarcomas need. They understand that there are many elements simultaneously at work, physical, emotional, mental, financial, family support in all of those areas too, all important needs and responsibilities. The Wendy Walk supports families in getting access to solutions or help in all of these areas, and offering support while demanding and acknowledging progressive research in detection, treatment and ultimately, prevention of sarcoma.