A lymphedema journey can be a very difficult one for it is a chronic, incurable, and only manageable condition. My particular path since recovering from breast cancer surgeries and treatments has challenged me in ways I never imagined.
Since being afflicted with lymphedema, well-meaning friends and relatives have inquired, “Do you really have to wear that compression sleeve?” or, “Can’t you take a pill to alleviate the swelling?” The answer is no, to both questions. Damage to the lymphatic system is not repairable, and compression is one way of managing the swelling.
The Mayo Clinic describes lymphedema as being caused by a blockage in your lymphatic system, which is an important part of your immune and circulatory systems. The blockage does not allow lymph fluid to drain well, and as the fluid builds up, the swelling continues. Lymphedema is usually caused by the removal of or damage to your lymph nodes as a part of cancer treatment. Approximately one out of twenty breast cancer patients develop some symptoms.
My lymphedema journey began in 2011, one year after I had undergone major surgeries.
As a stage three breast cancer patient, there was a danger of the cancer leaving my lymphatic system and traveling to other organs of the body. In order to test for such cancer spread, surgeons today do a sentinel lymph node surgery, which isolates the main node. Radiologists can then predict the condition of the lymph nodes surrounding the sentinel node and decide how many lymph nodes to excise.
After my mastectomy, in which thirteen of these nodes were taken, I was given a sentinel lymph node biopsy and went straight to surgery for further excision. This procedure helped to reduce the number that had to be surgically removed, but in my case, lymphedema was a very possible side effect.
It was not until after my chemotherapy, radiation and failed breast reconstruction surgery that the signs of lymphedema became evident. My arm ballooned up, and pain from my elbow began to affect my health. It was heavy, unsightly and embarrassing. I was wearing my compression sleeve religiously. The most frequent comment I got from strangers and acquaintances was, “What did you do to your arm?!” It was tempting to make up some ski accident or say, “You should see the other guy!”
Nevertheless, I felt obliged to explain what my condition was and to educate those who had never heard of lymphedema. I was a one-woman campaign to end ignorance concerning this health issue.
The most evident part of experiencing lymphedema is the compression sleeve. A sleeve can range from LympheDIVAs’ vibrant colors and patterns to the ugly “flesh-colored” garments that are a heavy-duty version for the more affected. They are hot, uncomfortable, and sometimes chafing. If you do not get a custom sleeve, they are typically too short or do not fit the hand exactly, and the arm can end up looking slightly alien upon taking off the sleeve.
Thankfully, I have a custom sleeve now, with silver running through it to keep my arm cooler. It is a brownish color, which I prefer to the pinkish sleeves of my past treatments. I have also benefited from bandaging the arm, which is a process only my therapist and significant other can accomplish. It consists of an inner “sock” for the arm, then foam and finally bandages. It is not so good for being out in public, because with a mummy arm you get even more comments from strangers. Another treatment, performed by a therapist, is a special way of massaging my arm lightly, as a manual way to move lymphatic fluids from the arm to the lymph nodes on the opposite side of the body.
Every night, an hour before bedtime, I use a machine which manually massages my arm upwards in a very specific pattern to help the fluid to “the other side,” so that it can be processed by my good left arm.
My own personal journey with lymphedema has brought tears of frustration, embarrassment due to my non-matching arms and just basic pain and annoyance. However, the trade-off being that I am alive makes the journey doable. I have learned to be grateful for the fact that breast cancer treatments have advanced even over the last few years. A journey that is difficult is also worth the lessons learned.
Opinion by Lisa M Pickering