I want to support anything and everything to do with lymphedema, either people (doctors, nurses and emergency medics) don’t even know anything about lymphedema and those who do know something, oncologist and lymphedema patients are woefully uninformed and/or misinformed. I know from my own experience. I suffer from a chronic stage 2 lymphedema and went for over 3 years getting MLD from PT’s who had just enough training to get certified and did not truly help at great expense and suffering for me. Then they have the nerve to charge insurance companies, or in my case, Medicare outrageous fee’s for grossly inadequate treatment of this serious medical condition. Isn’t it enough to suffer the myriad of brutal ways most breast cancer patients are subjected to? The cumulative effects of losing your breast(s), being disfigured (as I am), being subjected to 8 1/2 of aggressive and nasty, sickening chemo therapies (all in existence), 33 weeks total of maximum dose radiation therapy leaving me permanently and badly scarred, living with chronic burned sensitive skin that refuses to heal and is a constant source of potential infection, burning, itching and inflammation. Not to mention, there is no way I can cover up all the damage done from the base of my ears to the bottom of my rib cage encompassing my entire chest. It is unsightly, more than uncomfortable, and the damage has left me with no chance of reconstruction.
The same goes with my chronic and debilitating stage 2 lymphedema of my upper left extremity (arm and shoulder). I have heard from many people, including those in the medical profession, that lymphedema doesn’t hurt. I can only speak for myself when I say, much of the past 4 years now, that my lymphedema aches, causes numbness in arm, hands and fingers and the inability to use my arm/hand in any substantial way. Most of the pain I have experienced as a result of edema has been tolerable, but still pain for sure. However, I must state for the record, that from November 20, 2010 all the way through December 23, 2010, I got an infection, I think it started under my arm pit where the swelling so so extensive that my skin was stretched so thin and the skin was cracking open, leaving me a most vulnerable target for infection. This episode of lymphedema was the worst case I had ever experienced and let me tell you it was very painful, unbelievably painful. The morphine and vicodin I was already on for chronic pain didn’t even lessen the pain at all. The oncologist gave me pain patches applied directly to the skin and effected area in addition to another more potent pain medication. It took over 4 days to get the pain under control. Simultaneously, my oncologist gave me a strong antibiotic.
The entire ordeal – even with aggressive treatment (with medication), took over 4 weeks to diminish and another month and half to fully recover “meaning pain free.” The swelling reduced to some degree and I worked daily on self lymphedema manual drainage and compression bandaging, and of course daily lymphedema exercises and the very best skin care to ensure the arm was sterile, moisturized, protected from bites, scratches, heat and other irritants. I remember a movie quote that is applicable to this lymphedema issue, it goes like this, “Some things in life cannot be taught, they must be lived to be understood.” The teacher – a blind sage to his pupil, Jennifer Gardner, in Electra, a trained for hire assassin.
Lymphedema is a serious medical condition, primary or secondary to breast cancer, but definitely a potential “life threatening” and truly a, “debilitating disease.” One thing my family and friends have learned by observation is that I cannot wear any of my dresses because my arm was too big. I am unable to wear 95% of all my clothes because of the swelling and chronic state of edema. Lymphedema limits me in absolutely every activity of my life – it is almost the same as having to function with one arm and one hand. It makes daily functions that we take for granted become time consuming and laborious challenges. Try getting dressed with one hand, eating, opening a jar, opening door, speaking on the phone. How about one handed typing….slooooow! I had to get my short hair cut even shorter because I can’t lift my left arm high enough or long enough to blow-dry, curl, brush all around etc. Taking a bath or shower is a unique challenge, just getting in-and-out of the tube takes slow movements and assisting aids (or a caretaker). Even driving myself to doctors appointments or physical therapy requires extra caution. Lymphedema, to a significant extent, necessitates “life altering” conditions and challenges that most people just take for granted, simply because when a person has full functioning of his or her body, everyday life events are not a challenge. No one knows what life is like for someone with particular physical disabilities. As a wise man once told me, “you don’t know what you don’t know.”
I am in no way lamenting or complaining as it may seem to some. But I am telling it like it is for those of us who have become disabled as a result of an insidious disease, suffering the loss of body parts or bodily functions as a result of “killing a disease.” We are all soldiers of life. Everyone has her or his own battles to fight. Hopefully, someday I won’t have to worry if I can afford the physical therapy or MLD, that I will have to spend unrelenting hours on the Internet and phone trying to find some charitable organization that can provide financial aid for therapy, lymphedema supplies and medication. It is a daunting task. Probably worst of all is that even though I (others) are sick, fatigued, chemo-brain, we still have to be our own advocates. We have to learn about this disease and then teach our doctors, therapists, families and even the insurance companies and policy makers (God bless them).
I learn more about the disease (medical condition) of lymphedema everyday. I am blessed, very blessed, to have found a stellar expert who knows lymphedema and where I now receive therapy. Dr. Kevin Kunkle founder and president of the Flagler Institute for Rehabilitation (and a budding non-profit for lymphedema patients) right here in West Palm Beach, Florida. With more real professionals like Dr. Kunkle, there is great hope to the treatment and management of this debilitating medical condition. Thank you Kevin Kunkle, lets spread the news. Let us teach others what they don’t know about lymphedema.
