In December 2013 I was diagnosed with breast cancer. I and my family and friends were devastated and scared. For two weeks I went through many diagnostic tests including a lumpectomy. Two days after Christmas I had a radical mastectomy with 27 lymph nodes removed. The sentinel node and three others were swollen with cancer cells.
In mid January my surgeon sent me to a Physical Therapist who specializes in lymphedema treatment because my arm was a little “puffy” and she wanted me to get an early start on preventative treatment. At PT, I was given lymphatic drainage massage with “taping” to facilitate drainage. As my body healed from surgery it became apparent that the arm and upper quadrant were not draining the fluid as well as we had hoped. I continued PT until my insurance carrier decided I had all that was needed despite the documentation to the contrary.
Next, my oncologist noted that the chemo drugs appeared to exacerbate the fluid retention and I would get tiny, itchy fluid “blisters” only on my effected arm. I was given several courses of prophylactic antibiotic treatment to ward off possible infection to that arm. In April I went to Syracuse (a 90 minute drive) to see a nurse who specialized in prosthetics and lymphedema sleeves/gloves. My insurance will pay for 2 sleeves/gloves per year. This sleeve/glove seemed to do the job (for a while), wearing them every waking hour and elevating that arm.
In July I started a course of 38 radiation treatments. As the treatments progressed my sleeve and glove were getting uncomfortably tight. My radiation oncologist referred me to a lymphedema clinic at the same hospital where I received chemo and radiation. The specialist there has diagnosed me with “chronic lymphedema”. She has been wrapping my hand, arm and as much of the shoulder as she can. My entire upper quadrant front and back and arm are affected by poor lymphatic drainage. She also performs a different type of lymphatic tissue massage and fluid mobilization before the wrap is applied. This is helping but I have “rapid return” of the fluid when the wrap is off. I currently wear the wrap 24/7. She has taught my husband how to apply the wrap now. Wraps are uncomfortable and bulky!
It is impossible to wash the affected hand and perform household chores. The muscles get fatigued easily as they work against pressure and weight. I can’t pick up more than 10 pounds, which includes grandbabies. Grocery shopping is difficult. Vacuuming and mopping are very tiring to my unaffected arm. I can’t fill a pot with water and place it on the stove without help or casseroles in and out of the oven for that matter. Simple gardening is difficult due to muscle fatigue and bandages. Raking and hoeing are totally out of the question. Intimacy is awkward with the wraps and always having to be mindful of “my arm”. I’ve found it difficult to sleep due to the swelling when it wasn’t wrapped and now because of the cumbersome wrap! I am a psychiatric nurse and loved my job but I’m told it is to risky and I will need to find another position. I used to enjoy archery target shooting but can never do that again. Driving short distances is fine but my affected arm gets fatigued holding the steering wheel and there is no good, soft place to rest it. When it is rested on a hard surface it aches and gets indentations.I have to take a quick shower on weekend days when the unwrapping/wrapping is done at home. Sponge baths on other days. I have to wear a vinyl glove over the wrap to keep it clean when I eat, too.
All of the wrapping components have to be hand washed in baby detergent, rinsed, then the excess water removed before you can drape them over chairs to air dry. Then once dry, they have to be rerolled in preparation for reuse. Wrapping my arm, washing, laying out to dry and rerolling the dressings all takes approximately 3 hours per day on weekends. During the week we drive 40 minutes to PT for massage and wraps which lasts about 90 minutes, then 40 minute drive home! Once home I wash, lay out to dry and rewrap those bandages.
We were set up with initial supplies for all the wrapping but will soon need to start ordering replacements as these breakdown and become unusable. I’m not sure what its going to cost yet! The physical therapist is recommending a custom sleeve and glove because my arm is “being difficult”. My insurance won’t cover the “out of plan” provider that is highly recommended and want me to work with a company that we send the measurements to and they’ll make it. I don’t feel comfortable with mail order for something this critical to my wellbeing! If it is not exactly right it could do more harm than good! The other option is to pay the approximate $600.00 and be safe.
My biggest complaint is that there is a lack of understanding in the insurance industry about the impact and severity of lymphedema. They should be more pro-active. I feel that if I had been getting PT all along the lymphedema might not have progressed to this point. Even though I am a nurse, in nursing school I was never taught the devastating affects of lymphedema or about prevention or treatments. I did not know it was a life time affliction. In December 2013 I never imagined that I would still be fighting the consequences of a breast cancer diagnosis once the tests, chemo and radiation were complete. I was prepared for years of worrying about a possible recurrence of cancer but I was not prepared for chronic lymphedema! As you can imagine, this lymphedema diagnosis has been a very hard pill to swallow. I’ve cried over what the future will bring with this. It has drastically changed my life and my ability to cope. At times I feel like there is no light at the end of this dark tunnel!
