Saturday, November 28, 2009

What's Up Your Sleeve?

Does your left hand know what your right is doing?

For four days, my right hand was doing everything. My left hand – and forearm and elbow and upper arm – were all bundled up, wrapped to reduce lymphedema, a swelling that is common in women who have lymph nodes removed during surgery for breast cancer.

This bundling process, provided by an occupational therapist with special training in treating lymphedema, starts with a full-length gauze sleeve. More gauze is wrapped around each finger. Then comes a layer of cotton batting, followed by large pieces of foam rubber. Next is a wide band of stretchy gauze. Last comes not one, not two, not three, but four layers of stretchy bandages, all taped down.

Next? Me, whining.

Never mind that my left arm looked as though it had been ripped off the Michelin Man and transplanted onto me. I could barely bend my arm. It was heavy. And I had exactly three shirts in my closet that would fit over the thick bandages. Still, in order to combat the swelling and encourage my lymphatic system to start working correctly again, I was to go about wearing the tape, bandages, foam, batting and gauze wrappings for 23 hours a day. Staring in shock at my newly immobilized limb, I asked my therapist if I could type. She was sure I could.

I couldn’t.

The bandages on my left hand kept hitting all kinds of weird keys. My right hand was happy to go it alone for a while, but then that arm would start to burn and cramp. Meanwhile, my left arm alternated between itching, throbbing and feeling hot. Surgery, post-op annoyances, wrestling with the drain, dealing with extra fluid at the wound site and learning how to maneuver a breast form all were a cinch compared to living with this!

I was scheduled for two weeks of therapy appointments. Each week day, I was to unwrap my mummy arm in the morning, shower and then head -- unbound -- to my appointment. There, after a massage to stimulate lymph drainage, I was strapped back in. What about weekends? Well – I was told I could take off the bandages and shower on weekends if I could wrap my arm back up properly. Hah!

I couldn’t.

Lymphedema is not curable -- I learned this on my first day of therapy -- but it can be managed. If treated early enough, sometimes a mild condition will reverse spontaneously. If left untreated, symptoms may include severe fatigue, a swollen limb, fluid accumulation in other body areas, discoloration of the skin, infection and eventually, deformity. An extreme version of lymphedema (one that involves microscopic parasitic worms) is elephantiasis.

To reduce the risk of my wee bit of lymphedema running wild and out of control, my therapist said on the second day of therapy that the prescribed treatment would be to wear a compression sleeve every day and to bundle and bandage my arm every night -- for the rest of my life. I just looked at her and said, “No.”

I couldn’t.

I went home that day with my left arm immobilized and my mind and spirit pulverized to a fine powder. Since Oct. 7, people have been telling me things I do not want to hear. Since Oct. 7, I have been moving passively through the medical world, a patient expected to be compliant. Since Oct. 7, my sense of myself as a healthy, active individual has been under siege.

On the third day of therapy, the lovely young woman who truly wants the best possible outcome for me discussed an alternative to night bundling – specifically, an elaborate, expensive compression sleeve. She also showed me daytime sleeves that come in bright, crazy colors, as though making a fashion statement with a sleeve would make wearing it more appealing.

The fourth day was Thanksgiving. Time spent with friends and some delicious food pierced my gloom for a short time, but through the day, though people said, “Have a nice holiday,” I couldn’t.

At 3 a.m. on the fifth day of therapy, I woke up and could not get back to sleep – a rarity for me. At 5 a.m., I unwound every layer and freed my arm some four hours earlier than prescribed. At 10 a.m., I dragged in to therapy and announced that we needed a new plan, a plan that would allow me to take good care of my arm but that also would allow me to move through the world as myself.

The therapist hugged me. Next, she measured my arm and reported that the swelling was down by half. Then she told me that if I could find a medical supply store that stocked an off-the-rack compression sleeve that met her standards, I could buy it and try going bandage free, as long as I wore the sleeve during my waking hours.

I could. I did. I am. And it's just fine!


  1. Hard as it may be, you are always much better once you find your own voice and your own self. I'm so glad you have the persistence you do. Bet you are, too! You give us all the strength to cheer wildly for you, and hopefully learn to also cheer wildly for ourselves!

  2. I really appreciate reading about your experience. We are both thinking of you here, and sending warm healing thoughts your way.