lymphedema: the lemonade of my life

Robin_NapaIn March 2005 I was diagnosed with Stage III breast cancer at the age of 21. Because I was young and my tumor was large and already spreading to my lymph nodes, I was treated very aggressively. I underwent chemotherapy, bilateral mastectomies, multiple reconstructive surgeries, and radiation. To get all the cancer cells, my doctors also removed a large cluster of lymph nodes from my armpit.

I sincerely hoped that once I was finished with radiation, I would be able to go back to a somewhat “normal” life. Unfortunately, shortly after I finished treatment I developed lymphedema in my right arm.

The diagnosis of lymphedema was much harder for me to accept than my cancer diagnosis. To me breast cancer seemed like it should have a start point and an end point. Lymphedema, however, serves as an everyday reminder of what I have been through. I have to wear a compression almost 24 hrs a day, do my self-care, and always be on the lookout for signs of infection. It was overwhelming, and all I wanted was to be young and carefree.

Despite the hardship, having lymphedema has become a blessing in disguise and has given meaning to my life. I find that helping others navigate their lymphedema treatment enables me to deal with my own reality.

When I first developed with lymphedema, garments were only available in nude, which honestly doesn’t match anyone’s skin tone. I called some of the big garment manufacturers and asked for black garments, but didn’t have any luck so I decided to make my own. I joined forces with another cancer patient and a friend from college and started a company called LympheDIVAs that offered upper extremity garments in bright colors and patterns. I was only with the company for about a year, but I knew my life would never be the same.

For the past five years I have been working for the National Lymphedema Network (NLN). I have the wonderful opportunity to spread awareness of lymphedema, help educate medical professionals, and directly talk to patients to help them find treatment and learn to thrive with their lymphedema.

I sometimes have the momentary “why me” thoughts and wish I could make it all go away. I think that those days are important for my healing process, but most of the time I am grateful that I have the opportunity to help others like me. If I can help someone else through a rough time, maybe it’s all worth it.

Robin

One thought on “lymphedema: the lemonade of my life

  1. Sally says:

    Great blog! I felt like I was reading my story. So true and hard to explain that it’s much harder to accept my lymphedema diagnosis than the cancer. I just remind myself everyday how blessed I am to be here for my family and cancer free.

    Liked by 1 person

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