Shortly after I had a double mastectomy, I got lymphedema in my arms. I was devastated. I knew going in what it was, and I was terrified.
Put very simply, the lymphatic system provides cells with nutrients and acts as a means of waste removal. We need it to survive. However, the same system will also carry cancer cells to other parts of the body, which is called metastasis. Cancer cells get trapped in lymph nodes and cause secondary tumors, which is why surgeons will err on the side of caution to keep the cancer from coming back. Curing cancer is their focus after all.
When the lymph system becomes blocked due to traumatic injury, such as removal of lymph nodes during surgery, the fluids that normally drain become blocked. The blockage causes the affected limb to swell. In my case, I felt a heaviness in my arm. One arm was larger than the other. It was sore. It ached. It was painful to touch. I felt little lumps under the skin that I knew weren’t there before.
So what do I do now? How am I going to live with something I was so afraid of? Something that makes me so angry and depressed? Something that is affecting the quality of my life – and will for the rest of my life.
One of my surgeons found Dr. Emily Iker who specializes in Lymphatic Diseases. Luckily for me, she is located right here in Santa Monica. Dr. Iker is the one who helped me begin healing, both emotionally and physically.
In my case – which thank the Lord is relatively mild – Iker uses Manual Lymphatic Drainage and a pneumatic pump. I try to see her at least once every 4-6 weeks. It ain’t cheap, and I’m so grateful I can afford it. She fitted me with compression sleeves that I need to wear most days and especially on airplanes. They’re hot and uncomfortable. I can’t lift more than a few pounds. I need to be careful not to get a cut that might develop into an infection. I have to have blood drawn from the less affected arm. The same goes with blood pressure cuffs. I have to stay out of hot showers, steam rooms and jacuzzis. It was very difficult for me to work in the New Orleans heat. The list goes on.
After my diagnosis, Iker introduced me to Bill Repicci the Executive Director of the Lymphatic Education & Research Network (LE&RN).
Bill told me that up to 10 million Americans suffer from lymphedema. More than muscular dystrophy, multiple sclerosis, ALS, Parkinson’s and AIDS – COMBINED. When I heard those numbers, my jaw dropped. Bill also told me that many veterans who have suffered traumatic injuries on the battlefield can develop lymphedema. But, it is also genetic.
I decided to take all the negative feelings I have about lymphedema and turn it into helping other people who are suffering, in many cases much worse than I am. I became an official Ambassador for LE&RN.
As an ambassador, I want to educate the public about this disease. There is a host of information available on LE&RN’s website, lymphaticnetwork.org. We are trying to spread the word about this disease – and make no mistake this is not about cosmetics. This is a chronic degenerative and inflammatory disease.
Incredibly, many people, including doctors and nurses outside the cancer realm, have never even heard of it. In some cases, even people who suffer from lymphedema have never been properly diagnosed. And early diagnosis is key. Appropriate treatment is essential to limiting progression of the swelling. When the swelling goes unchecked, the tissues harden and mobility is severely compromised. It becomes much more difficult to treat.
In addition to raising awareness, we want to raise money for research. Recently, through LE&RN’s support, Dr. Karina Yaniv and her colleagues at the Weizmann Institute of Science in Israel revealed how the lymphatic system develops in the embryo. And for the first time they managed to grow lymphatic cells in the lab!
I and all of us at LE&RN so appreciate the opportunity you have given us to get the word out about a disease that affects the lives of millions of people.