Deb’s Story

On Valentines Day, 2013 I found out I had breast cancer. I was fortunate that they caught it early and I was sent to the leading cancer center in the state of Michigan to begin my course of treatment. During my initial consultation, one of the specialists mentioned that one possible side effect of the proposed treatment plan was something called lymphedema. They assured me that it was only a minor, possible complication of the proposed treatment plan. Little did they know! The treatment plan I chose, following the recommendation of “the best” cancer center specialists included breast preservation surgery, a partial mastectomy, sentinel node recovery and radiation therapy. Turns out that this particular combination yields 70-80% of women to develop lymphedema. That would have been useful information to have BEFORE I made my decision! My surgery was in March of 2013 and every time I went for a check-up, I would get chastised by these same specialists for my “swelling”, like I had any control of it. I finally ended up in the lymphedema clinic of the cancer center, and only because I demanded to know what was happening with my body was I finally evaluated and diagnosed with this condition. I have gone through physical therapy, occupational therapy and again a second round of physical therapy in order to learn to maintain my condition. If I followed everything I am supposed to do to manage my condition I would be unable to work. I would need to devote 5-6 hours a day to use my lymphedema pump, do my stretches and breathing exercises and apply the bandaging that is required. I live in a remote area and have travelled over 17, 000 miles this past year to seek treatment for this condition. I get most frustrated because I can’t get the compression garments I need, even though my insurance would pay for most of them if there were a supplier in my area. I need to wear and compression sleeve and gauntlet daily, but my insurance company only will pay for the sleeve. This makes no sense. I can’t order them on-line, even though they are cheaper this way, because the companies that carry them don’t participate with insurance companies. So, I pay for these items out of my pocket because I have to have them. If I don’t have them, I could end up hospitalized with infections. So far, I have chosen to buy what I need instead because I need to be able to work, so I can pay for my supplies and keep my health benefits. There has to be a solution for women in my same shoes. I want to become part of a solution so others don’t have to struggle like I have!