Sandy’s Story

In June of 2011 my life changed forever as a result of a mastectomy for breast cancer with the additional removal of 26 lymph nodes. I had never heard of lymphedema, but I have now lived with it for 2 years and it is very disabling. I had 10 weeks of therapy to get it under control and I have to wear compression garments 24/7 to reduce swelling. In addition, I have to be on a compression pump 3 hours every evening or my arm and upper torso feel like I am wearing a fully inflated blood pressure cuff and no one ever lets the pressure off. My hand and fingers swell up, making it hard to pick up small objects and many times my hand looks like a boxing glove with no knuckles because of fluid accumulating. I had been a professional photographer for 35 years, shooting over 2,000 weddings, but the lymphedema has made it hard for me to hold my camera now because my arm is heavy and weak, and tires out easily. I have to always keep my arm elevated, which is quite impossible when being on a computer or riding in a car, so my life has been altered dramatically with lymphedema. I would be very interested in seeing the Lymphedema Act passed because I feel this is an unknown medical condition in the general population. I certainly had never heard of it until I got it, and my life has been totally changed and limited by having it.