How I Wear My Genes

It’s October. The weather has turned cooler and I finally had to break out the jeans and long sleeved shirt. As I suspected the 10 1lbs that I gained truly showed its colors as I tried to button my jeans. Not only am I sad about the end of summer, I am also unhappy with my weight gain and the tight fit of my once comfy blue jeans. UGH!

Having to squeeze into a pair of jeans is just not fun. I could buy a bigger pair, or I could lose the 10 pounds. I just cannot bring myself to purchasing a size up, so I choose to lose the weight. How I long for last year when I could slide them right on as I struggle

October is also breast cancer awareness month, which always reminds me of the other genes. Not the blue jeans that I am struggling to wear but the family genes.

How I wish that my family genes were as easy to deal with as my blue jeans. As I struggle with my blue jeans, it reminds me of my struggle with my family genes.

My mom, Marlene was one of nine women in her family, spanning 3 generations who have been afflicted by breast or ovarian cancer, including my grandmother, great aunts, aunts, cousins and my sister. My mom’s family referred to it as the Sosne curse. Only 3 women are survivors, my sister, my aunt and a cousin. I am 51, and I am surrounded by my family genes.

My earliest memory was in 1963, I was just three years old. My grandmother’s sister, my great Aunt Sarah had died of breast cancer. I can still recall the hushed conversations and whispers. The word “cancer” first entered my vocabulary. The word cancer brought fear, dread and death.

Many conversations were spent talking about the Sosne genes. As a young girl I was so confused. In those days to me jeans were my Lees’ or my Levi’s. I couldn’t understand why the women talked about blue jeans. It’s not like they ever owned a pair jeans. It was not until I was a young adult that I truly understood that the blue jeans were really the family genes. They were not the blue jeans that I love to wear, but the kind of genes that I did not want to wear. You see the genes in my family are the genes that carry breast cancer. These genes have caused much heartache and pain. These genes cause the death of many women in my family including my mother.

After the discovery of the BRCA 1 and 2 genes in 1995, the mystery of our family genes began to unfold. Here was the answer to the Sosne curse. My aunt Rochelle, my mothers’ sister and my sister Norma decided to have genetic testing. My aunt, diagnosed with breast cancer in 1996, tested positive for the BRCA2 gene. My sister tested negative. My other sister Debbie and I decided to stick our heads in the sand. We really did not want to know about the genes.

A phone call in the spring of 2004 changed my world yet again. My sister Norma had breast cancer. I was shocked and devastated. Norma had tested negative for the BRCA genes. How could this be? Within a six month period of time two more women in the Sosne family were diagnosed with breast cancer all testing negative for the BRCA genes. What was going on with the Sosne genes? The fear was rampant.

At the end of 2004 I decided to have the genetic testing done. I wanted and needed to gain some control in my life. Knowledge is power. I tested positive for the BRCA2 gene. I carry the genetic mutation for breast and ovarian cancer.

I inherited my genes from my mom. The BRCA2 gene was passed to my mom through her mother. How I wish they were hand me down blue jeans. If they were hand me down blue jeans I could opt to not take them. I don’t have that option. These are my genes and I have to wear them. I immediately had my ovaries removed. The recommended prophylactic double mastectomies were put on the back burner in favor of heavy surveillance. I was still trying to get comfortable in my genes. They didn’t fit very well.

My Sosne genes are very confusing. Here I am BRCA2 positive and cancer free. There is my sister Norma and 2 cousins diagnosed with cancer all negative for any gene mutations. The Sosne genes are very unique, sort of like designer jeans. Not only do they carry the BRCA2 gene, they experts have concluded that the Sosne genes may have their own mutation or an undiscovered BRCA mutation. How I long for the simplicity of my Lees’ and Levis.

Over the years I have taken good care of my genes. They are just like my favorite blue jeans that I want to wear for a long time. Twice a year for the last 7 years I see the doctors and I have my screenings. I am diligent. Recently my genes have started to show some wear, sort of like the tight blue jeans I tried to slide into. They are not fitting well, so the time has come to have my prophylactic double mastectomies this coming December. This decision will allow me to me live a long life with my genes.

So you can see the genes in my mother’s family are quite different than my now tight blue jeans that. I sometimes long to wear different genes but I can’t. How easy it would be if I could just buy a new pair. They are not the genes I would have chosen but just like I choose to keep my now tight jeans, I have chosen to embrace my family genes fully.

These Sosne genes have given me the opportunity to create deep and meaningful relationships with family and friends. They have helped me to learn skills to help myself. These genes opened the possibilities to develop expertise to help others in this cancer journey and to create my company GoodGrief Coaching. My genes are a gift in many ways.

I have accepted my genes just like a pair of my favorite blue jeans. I wish I could slide them on and have them fit all of the time, but that is not the case. Sometimes I struggle to wear them, however I choose to wear them proudly. So as the weather changes, and I try to pull on my now tight jeans, I am reminded of my other genes. The genes I inherited from mother. I wear them with pride because they have been the catalyst in finding my hope, my meaning and my purpose in life.