In 2011 Michele was diagnosed with ovarian cancer. After surgery and shortly after her chemotherapy treatments ended, she noticed that her right thigh felt strange. After questioning her oncologist on two occasions, she was finally told that it might be lymphedema. Throughout the 8 months of her cancer diagnosis and treatment, the word lymphedema was never mentioned by any medical professional, although 30-40% of gynecologic cancer survivors will develop lymphedema in their lower limbs. Distressed by the lack of information and solutions for lymphedema, as well as the poor prognosis, Michele set about educating herself and searching for quality treatment options, including Complete Decongestive Therapy, bandaging, and compression garments. LE&RN became her “go-to” place for education and resources. Although living with lymphedema has meant changes in her lifestyle, Michele decided that it would not prevent her from embarking on the dream adventure she and her husband shared. After retiring from her career in education, Michele and her husband lived aboard their boat, cruising to the Bahamas and back for 8 months. Twice. Michele admits that lymphedema made the cruising lifestyle particularly challenging, but she has no regrets! As a retired educator, Michele participates in Survivors Teaching Students: Saving Women’s Lives, a national program through the Ovarian Cancer National Alliance. STS brings ovarian cancer survivors into medical education programs to educate future healthcare providers by sharing stories of diagnosis, treatment and survivorship, along with facts about ovarian cancer. At every presentation, she weaves in her story of lymphedema. Serving as Co-Chair for LE&RN’s Connecticut chapter is another match for Michele’s education background. Michele’s goals for the chapter are to increase understanding and awareness of lymphedema in the medical community and the public, and to provide quality resources, support and inspiration for other “lymphies.”

When I was 10 years old, I noticed that one of my ankles was a bit swollen and told my mom. After many doctor visits and tests over a year or so, we had a diagnosis:  primary lymphedema.  The next step was to figure out how to treat it.  Eventually, the other ankle swelled, and I wore knee-high compression stockings under my uniform knee socks with my uniform skirt to school. 

In my mid 30´s, I´progressed´ to wearing thigh-high compression stockings.  Fast forward to today where I wear thigh-high stockings, toe caps, and compression shorts.  I also have had 5 bouts of cellulitis - something I had always heard about but never thought I would get.

It has not been easy, but it has been manageable.  I attribute this to two key blessings:  1) early, accurate diagnosis and 2) the Internet!  Of course, good insurance would be an added bonus,  but, it has not always been provided.  Compression stockings are a miracle, and, through the Internet, I have learned so much about primary lymphedema including its genetic markers.

Since the creation of LE&RN, I have also been able to self-advocate in ways I never could have before, and I no longer feel like I am the only one!  I love the FB posts and articles, and I am making friends in my local chapter.

I am more than happy to spread the word to others with this diagnosis, and I am also able to share information about lymphedema to those in the medical community who are not familiar with it .