Sarah’s Story

As I entered year 4 as a cervical cancer survivor I developed severe lymphedema. It came on quickly. I was active, a wife, and mother of 3 young children. My swelling came on with a vengeance in my left leg. I was swollen from my toes up to my abdomen. When I had cancer I had lymph nodes removed on both sides of my pelvis and chemo radiation combined. I sought treatment quickly. I had a physical therapist who acted in my best interest and over the course of a year my swelling became worse. We started with the lightest garments and eventually ended up in the highest grade of a custom compression . I have a trunk and leg peice for daily pumping, a nightime appliance, compressions, and bandages. After a year I questioned if I could continue to work. I had developed infections and I had grown out of my shoe and clothes. I sought out surgeons who could do a lymph node transfer. I questioned if I should have my leg amputated but they didn’t know if the lymph fluid for swell up and over into the other leg. I had surgery and had lymph nodes placed in my groin, upper and lower leg along with liposuction to clean out the fat cells that were multiplying. I took a 4 month leave of absence from work and went to daily physical therapy. I started a strict regiment that I still do daily. I pump an hour before work, 1 hr during work and an hr in a half before bed. I buy compressions out of pocket with extra foam and pads around the ankle. I replace my bandages every 2 months instead of when insurance covers them every 6 months. I buy extra custom made peices to support my leg. This is a financial burden and although it does help me to have success I will have to do this for the rest of my life. Post cancer I know I only have this one life to live and I need to do these things but I hope for the day when the financial burden is lessened and these medical needs are seen as imperative as they really are for my functionality.