15 Years of Surveillance

When my mother died nearly 4 years ago, I was crushed. It wasn’t just losing her, it was how we lost her. Her cancer, multiple myeloma, was ugly and furious. From the time of diagnosis, she was gone 13 months later. In that time, she went from a bright, vital, upright woman to using a walker, to a wheelchair, to an invalid. She was amazingly graceful through it all. Grace―it was really how she lived her life and people were in awe of that quality. But at a certain point, she was just ready to go. To let go of the body and disease that was not only killing her, it was disconnecting her from the life she was so engaged. It was a relief when she finally passed and it took me a long time to fade the images of every emergency, every undignified moment, the changes in her body, the changes in her mind, and the last breaths she took.

After my sister tested positive for the BRCA2 mutation, I had a choice. Get tested myself or continue aggressive surveillance. I was counseled in a fantastic high risk program. I saw a genetic counselor who reviewed my family history and we talked about risks; I had a nurse practitioner and breast specialist who examined my breasts 4x/year and grew to know them better than me; I spoke to a psychologist who wanted to ensure I was understanding the genetic possibilities emotionally; a nutritionist counseled me on limiting soy and sugar (which I knew already is an inflammatory agent to cancer) along with other healthy advice; and a new gynecological oncologist worked with my gynecologist to oversee all of my surveillance and results. This was all covered by my medical insurance! I listened to everything they said, I had multiple appointments with the genetic counselor, and I opted to continue surveillance. I couldn’t emotionally handle the news if I also tested positive. I was mourning the loss of the my mother, accepting my own survivorship of melanoma and the ongoing biopsies I will face to ensure we catch the next one as early, and my father was still in treatment for his lymphoma.

It was the right choice at the time.

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