Beating Secondary Lymphedema

My wrist and forearm swollen through lymphedema

Lymphedema was the last thing I was worried about when I embarked on an eight month ordeal to overcome breast cancer. In fact, I had never heard of lymphedema.

It is a condition resulting from damage to the lymphatic system. In my case it was caused by scarring resulting from a bilateral mastectomy, removal of eight lymph nodes under my arm, and subsequent radiation of the remaining lymph nodes in the upper left quadrant of my body.

I noticed the beginnings of lymphedema almost immediately once I was released from the

Me in the hospital awaiting surgery to remove cancer.

hospital after undergoing a bilateral mastectomy and breast reconstruction.

The wounds did not heal and became inflamed.

Neither the plastic surgeon nor her nurses suggested compression garments. We tried increasingly stringent courses of antibiotics and were about to schedule a surgery to remove the implants when a friend reached out.

Her sister, also a cancer survivor, had seen one of my facebook posts and told her to take me to purchase a compression bra. My friend Terry drove me to a specialty store for cancer survivors in Albuquerque.

My severe discomfort disappeared within seconds of trying on the bra. And the wounds which had festered for two months, cleared up in a matter of days.

At the urging of my friend's sister, I requested a referral to a lymph therapist. The referral was not immediately forthcoming because insurance does not consider treatment to be necessary until symptoms have persisted for at least six months.

My bandaged wrist and forearm

I learned at this time that the average physician spends ten minutes learning about the lymphatic system in medical school. Can you imagine hiring a contractor to build your home who had spent ten minutes learning about plumbing???

Fortunately, I am extremely persistent. I insisted on a referral to a specialist in an attempt to--- gasp---prevent chronic lymphedema. At this point, treatment consisted of lymph massage, a specialized light touch massage meant to help the body clear lymph fluid, and light compression sleeves.

About to leave the hospital in a special shirt equipped with discreetly hidden drains to catch excessive lymph fluid.

By this time, the build up of pressure in my arm had destroyed the delicate valves in our lymph vessels that help, with the assistance of muscles, to move fluid through the body. Lymph fluid is not pumped through vessels by the heart like blood. Rather, it is pushed by the muscles when they contract. It is prevented from backing up by valves. Lymph vessels can regenerate but valves cannot. My body lacked a means of moving lymphatic fluid through my arm because I no longer had valves.

I graduated to wrapping cotton gauze, various other linings, and four short stretch bandages on my arm every day. At night I wore a variety of special waffled night sleeves I referred to as "oven mitts" which kept me awake because they were hot and I could not bend my arm.

Two of my favorite "Oven Mitts"

I was issued a waffled contraption that consisted of a chest and arm vest and some shorts which I attached, through four tubes to an air pump. I called it my "Michelin Man suit." I sat in it for an hour every night as each strip in the suit inflated and deflated to move lymphatic fluid through my body. I also bounced on a trampoline at least ten minutes a day, and spent thirty minutes applying lymph massage to my arm.

Managing lymphadema was a full time job, and I already had a full time job!

I did not see any improvement.

Eventually, I opted for a surgery to remove the three liters of fibrous protein and fat deposits that had built up in my arm.

Gussied up in my Micheliin Man Suit. I think I look just like the Stay Puff Marshmallow Man from Ghostbusters.

I would first have to make a trip to Mayo in Minnesota to be evaluated and approved for surgery. I saw a lymph therapist and a specialized lymph doctor. The doctor told me it made him tired just hearing about the steps I was taking, and rooting through my suitcases filled with lovely compression garments. He said that moving forward, I should limit my efforts to building muscle and to wearing stiffer compression. I could limit myself to one set of day garments and one set of night garments. I was approved for surgery.

The surgeon informed me that because the lymph vessels in my arm were completely destroyed, I would require two surgeries. The first, while improving appearance, range of motion and quality of life, was not curative. I would need a second more invasive surgery, transplanting a lymph node from my groin to my arm to prevent another build up of fluid in my arm.

Recovery from the first surgery required keeping my arm raised above my shoulder in a perpetual Heil Hitler salute for two months. I opted to drive with my husband from New Mexico to the Mayo Clinic in Minnesota rather than march through two airports saluting the Fuhrer.

Deadlifting a 100 lb kettle bell wearing a class 2 compression sleeve and glove in a hot pink "fight breast cancer" outfit.

I was still arguing by phone with my insurance provider as we drove to Minnesota for the surgery. They had denied it on various arcane technicalities. I eventually looped in a staffer of my US Senator through my iphone.

A few hours later, the surgery was approved. We had made as far as Colorado.

After my surgery recovery period, once I was allowed to lower my arm, I resumed physical therapy. My therapist, Caryl, suggested I also take up kettlebell with a private trainer. She was concerned my arm had atrophied after over a year in stiff compression garments and bandages. She recommended a trainer named Rebx.

Caryl, my physical therapist and friend, after we hiked up a mountain together.

Since little is known about lymphadema, Rebx, Caryl and I devised our own recovery plan. Lymphedema is exacerbated by obesity. I would work with Caryl, Rebx and a medically assisted weight loss doctor to increase my metabolism by building muscle, and to decrease body fat. I did not set a target weight as, in my opinion, my problem was caused by an imbalance between body fat and muscle, not by the appearance of being fat.

After a year of kettlebell, and despite my surgeon's prediction, I was able to stop daily usage of compression garments. I now wear them only if I am on a plane, at a higher than normal altitude of at least 11,000 feet (I live at 6,000 feet), or engaged in a high risk activity such as skiing. I use the night glove if I observe any kind of swelling in my hand, but have only needed it twice. I have not used the gloves for about four months and there is no observable swelling in my arm.

My Arm Today

I have reduced my body fat percentage from 55% to 39%. I hope to decrease it to 28% which is considered healthy.

But even if I get no further, I already appear to have won my battle. The surgeon said my arm would fill up again within seven years.

I am three years out with no swelling.

In fact, as I've lost weight my left arm has also lost centimeters, in symmetry and sympathy with my right arm.

And I'm working with Rebx to accomplish a chin-up.

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