My story starts in 2004. I had just finished a 30k race days before that was my best running performance at 42. I noticed on my daily run 3 days after that something was rubbing under my right arm. I reached up to find a baseball size mass under my arm. I immediately called my Gynecologist and he said I needed to come in that day.

They thought it was breast cancer because it does run in my family. We went through needle biopsies and the extraction of a couple of lymph nodes only to be told that it looked like cancer but it wasn’t something they had seen before in Greensboro, NC. My gynecologist pushed to get me into Duke University Health. I saw every specialist there with no diagnosis. We even verified that running didn’t have a impact. We did multiple pet scans with other testing. My surgeon who is in the practice of surgery went to many lengths not to operate due to lymphedema. We again went through removal of a few more lymph nodes. I woke up to be told I’m so sorry but you do have cancer. My dad was going through a difficult time and surgery and passed away 3 days after the diagnosis so I was numb and it didn’t sink in.

On the 4th day my surgeon called to say that Duke Pathology took the frozen dissection results and after further analysis it was not cancer. That was in July 2005. It was now December of 2005 and the lymph nodes kept growing and were very painful. We decided to remove all 35. The surgeon classified it as a radical removal and if we had waited any longer he would not have been able to remove them because they were wrapping around nerves, etc. His assistant closed me while he personally took all of the lymph nodes to Pathology and waited there until they confirmed it was not cancer. He educated me on compression sleeves and potential gauntlet in case my hand started swelling. He was very stern with me wearing the sleeve after physical therapy when doing anything that would stress my right arm including running, flying, etc. I hit another strange thing and experienced webbing. The scar tissue was visible outside on my forearm and under my arm. I had 3 physical therapy sessions a week to break it all up which was unbelievablly painful. I had that for 4 months. Needless to say, I am very dedicated with wearing sleeves and I usually go with the brightest there is from Lymphdivas. I traveled for businesss so it was always a topic of discussion with both women and men. I was amazed how many women who had breast cancer with lymph nodes removed that were never even made aware of this option. My surgeon got me into the National Institute of Health and they checked everything from head to toe. They had only seen 4 cases in 20 years in the world that resembled this. 2 of the patients had them enlarge in their neck. It has been 14 years and I still have the same discussions on maintaining swelling.

Doctors need to inform patients of the sleeves and with information on physical therapy with someone who is certified in lymphatic drainage education. All of this left my immune system very weak so I have to be very careful not to cut my right hand/arm and if I do I need to start antibiotics right away. It also attacked my mouth which for many years we were in react mode. In 2014 we made the decision to remove any questionable tissue and/or bone and I went through a total mouth reconstruction with implants. I really try not to dwell on the fact that we really don’t have a conclusive diagnosis. But I have also been very fortunate with moderate impact. My hope is that people know their body and always check on anything that is not normal for them. Many prayers brought me through this along with a dedicated team of doctors that I cannot thank enough. I am very blessed. Please let me know if there is anything I can do to get the message out on lymphedema and thank you for your support.