I was treated for invasive cervical cancer in 1977 at the age of 24. A series of surgeries culminated with a radical hysterectomy in which over 30 of my lymph nodes were removed. The swelling in my left foot gradually began appearing in 1982. I was an avid dancer so I thought the swelling was due to my dancing too hard. I was studying Mexican folk and flamenco dance which consists of intricate footwork. However, as the swelling began spreading up to my knee, my oncologist became concerned. He ordered tests and exploratory surgery; he thought my cancer had recurred. After multiple tests and a lymphangiogram, I was diagnosed with lymphedema (LE). Back in 1982 there was no treatment for LE. I was told to wear a compression stocking and elevate my leg whenever possible. This was not practical as I was working full-time as an administrative assistant and a single mom raising two young children. I could not be expected to sit at home with my leg elevated. There was no Internet back then so I couldn’t research my condition. I was not going to let LE dictate my life. I continued to work and managed to continue dancing, although I had to taper down on the intensity of my footwork.
Eventually, I was able to find a LE therapist at a Denver clinic. I traveled to Denver for a week of therapy, all at my own expense. The therapist showed me how to manage my LE by instructing me on how to bandage my leg at nighttime, exercises and the use of compression stockings. I continued to manage my LE, but in 1996 I developed a severe case of cellulitis after a spider bite on my LE leg. I was hospitalized for 8 days being treated with IV antibiotics to eradicate the infection that had caused my leg to swell to twice the size of my normal leg. Although the infection was successfully treated, the size of my leg remained twice the size of the normal leg. I became depressed at the fact that I was now dealing with a deformed leg.
To add insult to injury, I have had to fight with my insurance providers to cover the cost of the LE therapy, compression stockings and bandages. The stockings are unattractive and very hot. I would not be wearing these stockings if they were not necessary to maintain my LE; they are not a fashion accessory!
I found that water aerobics helped with the pain from the swelling. On one occasion the instructor noticed the swelling in my leg and asked me about it. She was intrigued and very interested to know about LE. However, two ladies who were in the pool waiting for the class to begin, heard me tell the instructor my story and they immediately got out of the pool and left. Apparently, they thought I was contagious! I will never forget that day and how humiliated and hurt I felt. After that incident, I began wearing men’s long swim trunks to cover up my leg in the pool. I also wear long skirts and pants.
I retired from Sandia National Labs in 2009 after 32 years of service and began a second career as a teacher. I work part-time for an after school program called Engineering for Kids. I am also very active in my church and teach religious education. I refuse to sit at home and feel sorry for myself. I will not let my LE define who I am. BUT I de
