Learning to Live With Lymphedema

“I feel bad about my neck,” Nora Ephron said in an essay of the same name.

I understand. My neck is not the neck of a young woman. I see my mother’s wattle emerging on the canvas of my flesh. I can live with this picture, but I am not perfect. No matter how good I feel about my neck, I feel bad about my arm.

My right arm is bigger than my left arm. Like some women with breast cancer who are treated aggressively with mastectomy, lymphadenectomy and radiation, I developed early stage lymphedema, which means I have to be vigilant to address ongoing issues now and to try to avoid full-blown lymphedema in the future.

According to the National Cancer Institute, “Breast cancer survivors with arm lymphedema have been found to be more disabled, experience a poorer quality of life, and have more psychological distress than do survivors without lymphedema. In addition, women reporting swelling have reported significantly lower quality of life with multiple functional assessments.”

Fortunately, my quality of life is good enough as I work with the lymphedema, although changing lightbulbs can make me burst into tears. I just wish I had one less worry while dealing with cancer in remission.

As I safeguard my arm and other areas with lymphedema, I fret about the future. My arm also makes me regret the past. Although radiation promised to increase chances of lymphedema, I developed it within months of surgery. If I could go back in time, I would do a few things differently.

First, the week I felt my body shifting, I should have admitted defeat. You know how one calls the doctor if fever goes over 100 during chemo? I did not, and I spent several days between bedroom and bathroom, nesting on a bare mattress because I could not walk downstairs for clean sheets. I felt so awful that I took hot bath after hot bath, which taxed my lymph system. If I could go back in time, I would pick up the phone and ask for help. I would take fewer hot baths.

Second, I could have spent more time studying Dr. Carolyn M. Kaelin’s “The Breast Cancer Survivor’s Fitness Plan,” a practical book, before lymphedema developed. While I did some basic exercises with the arm after surgery, I believe I could have done more earlier on to alleviate some problems, or at least prepare for the inevitable. I wish I had been mindful of lymphedema from day one.

On the bright side, I entered physical therapy for lymphedema before radiation, which meant a head start on self-care. I learned about moisturizing, hydration, lymph drainage, wrapping, arm sleeves, deep breathing, Kinesio tape and all the rest. When I developed a shoulder impingement with lymphedema and lost some range of motion, I began studying in earnest.

Meanwhile, even while alternating a clinical arm sleeve with a colorfully decorated one, I feel bad about my arm. Vainly, I avoid short and three-quarter length sleeves. Worried about further damage, I veil myself in ultraviolet protection, including a purple swim shirt for swimming in the ocean. Clothing can protect me from both flare-ups and blazing vanity.

There is one time, however, I do not worry about the lymphedema at all. That is when I swim easy laps in an indoor pool. People with lymphedema know that just standing almost immersed in a pool can be good, but moving my whole body inside the water helps both mentally and physically. This exercise is one of the best things I can do, and I keep making myself do it when I find six reasons not to or experience a lapse in the routine.

I feel strong when I am wearing my floral tank with double straps to avoid hurting my shoulder, which remains tender, and bra that lets me swim free from binding. I feel hopeful. My one-breasted body with one big arm becomes a precision instrument.

While I still feel bad about my arm other times, I appreciate it. With physical therapy and exercise, I have regained most of this arm’s range of motion and I am determined to age gracefully with a reasonably functioning arm, even if it would be healthier in a cancer-free world.

I recommend that anybody treated for breast cancer learn about lymphedema before it ever becomes an issue. Information can help with preventative or palliative care. I also hope that distress lymphedema causes, if it develops, is something you can talk to doctors, friends and survivors about. Venting helps.