My Leg, the Tree Trunk (Part I)

I want to talk about my legs. And one of them in particular.

I inherited them from my mother, who inherited them from her father. He was six feet tall and had a stocky, muscular build. His strong, thick legs matched his athletic body perfectly. Translated to the female side of the family, however, they were a DNA disaster.

They emerged in my mother and me as huge, slurpy thighs, kneecaps buried in fat, shaggy flesh, shapeless calves, and a tragic lack of ankles. I hated them. Hated them from junior high through menopause, in a swim suit, as I looked through Vogue, when I bought size 12 jeans, and every time I was in Manhattan.

Exposing those legs in a mini skirt was a major felony.

Even worse, during my senior year of high school, the new international fashion sensation was a young English girl called Twiggy. Her name described her body, although she was actually shaped more like a pencil. Even if I moved to a refugee camp to lose weight, I would never look like her. I dieted successfully a few times and reduced my legs to a size that prevented strangers from screaming when they looked at me. But my addiction to chocolate, complete lack of serotonin, and overall laziness always came back, and I blubbered up again.

I thought nothing could be more repulsive than the stubby tree trunks that were the lower half of my body. But I was wrong.

When I was 58 I was diagnosed with cervical cancer, had an immediate hysterectomy, and five weeks of radiation. I emerged from this crisis energetic, cancer-free, and ecstatic. I told all my friends that cervical cancer was one of the happiest events of my life and I wasn’t being facetious. It was the absolute truth.

If you’re going to get cancer, this is the one to have. The survival rate is 95%. The surgery removed all the organs in my body that no longer had any function except waiting until they were invaded by far more deadly cancers. I got to spend three months recovering from radiation, mostly in bed sleeping and watching TV. Along the way I lost 22 pounds. In short, I had a disease that wasn’t going to kill me, eliminated any chance of catastrophic versions of it, and made me skinny. I adored my cute little cancer.

A year later I despised it.

That’s when I woke up one morning and discovered that my left leg had ballooned overnight to about 8 times its normal size. I happened to have an appointment that day with my radiation oncologist, who instantly recognized what had happened.

“It’s lymphedema,” she said, “and there’s no cure for it.”

“You mean it’s going to look like this forever?” I grimaced.

“Yes,” she said flatly, and I recognized the tone. She was done with her part of the treatment and had no interest whatsoever in what occurred afterward. She already knew, but I didn’t, what this diagnosis really meant.

But I would learn about it, one day at a time, for years. And I would slouch through discomfort, disfigurement, debilitation, despair, and years later, deliverance.

If I once thought my legs were tree trunks, this one was a Sequoia. My normal leg, never skinny by any measure, looked utterly stunning next to its blurpy partner. The two of them were so mismatched that from the waist down I was equal parts Rosie O’Donnell and Audrey Hepburn. The liquids trapped in my lymphatic vessels eventually collected other waste materials and solidified, making it rock hard. It was a fat plank of rumpled flesh, huge and grotesque. A gam of ham.

My fragile sense of womanhood was decimated. I was close to 60, an age that reduces the number of body parts that can be tastefully revealed. Nobody wants to see the cleavage, abdomen, or upper arms of a woman that old. But a good pair of legs suggests a residual sexiness, a small, lingering trace of elegant anatomy. I never had good legs. But now one of them was an unsightly monstrosity. Every time I looked at it, I wanted to reduce its size with a meat cleaver.

In an attempt to be helpful with a condition that couldn’t be helped, my radiation oncologist referred me to someone she inaccurately advertised as “the best lymphedema doctor in Chicago.” That was a lie. Because there are no lymphedema doctors in Chicago. Or in the United States. Or in the world. Medical students never study the lymphatic system, even though it’s a vital network that keeps the human body alive. There are no doctors anywhere who know anything about lymphedema.

But I went to see him anyway, because consulting someone who knew nothing was the only treatment available. He was a sour, distracted old man not qualified to treat a goldfish, hostile, disorganized, and, as it turned out, supremely misinformed. He sent me to a physical therapist who had just finished her training, She knew even less than he did. I went once and never returned.

For a few months I did nothing except fume. Eventually I started physical therapy again because without it, my leg would get even bigger. I went to Lutheran General Hospital, where I met the only people in the universe who actually knew something about lymphedema. The therapists were uniformly smart, sympathetic, careful, and knew the most current advances in treating the disease, which added up to almost nothing.

They gave me the standard, and only, protocol for lymphedema, Manual Lymphatic Drainage (MLD), which was a very light form of massage. Its purpose was to reduce the swelling as much as possible. At best that was 20%. After the massage, the therapist put half a dozen very thick foam pads all over my leg and then wrapped it in 25 ace bandages, each one placed in a specific order and wrapped in a precise direction. When they finished, my leg was twice the size of being 8 times bigger than normal.

I slept with this enormous cocoon on my leg and went back the next day to have the bandages taken off, the massage repeated, and new foam pads and new ace bandages reapplied. I did this five days a week for four weeks. The net decrease in the size of my leg was zero. Physical therapy often does nothing to decrease the size of the leg; it just prevents it from getting bigger.

I continued a form of this treatment at home seven days a week. Every morning after my shower I sat on my bed with my leg elevated. I poured gobs of a specific skin lotion on it and slathered it around until it was evenly distributed. Then I did MLD myself, from my neck to my toes. This took about 25 minutes. When all the lotion was absorbed and my leg was dry, which took another 15-20 minutes, I slipped a plastic sliding sleeve onto my calf. Now I was ready to wrestle thick, tight brown compression pantyhose onto my body up to my waist. The left side extended to my toes, the right side to the middle of my thigh. The whole ugly entrapment felt like wearing a girdle that was too small and stockings that strangled my leg. As I pulled it on I had to make sure the seams were straight, the ankle was positioned perfectly, and all the vertical ridges of stretched fabric were in straight lines.

I did this every day and would continue to do so for the rest of my life.

At night, I peeled the pantyhose off and stuffed my leg into a lumpy wool tube attached by electrical cords to a large machine that mimicked MLD. An hour later, the machine stopped, and I put on a full-length quilted stocking about 15 times the thickness of an oven mitt and wore it through the night. When I woke up, I started the entire process all over again.

But that wasn’t the worst of it.

Getting dressed became an exercise in discouragement and futility. My left leg was so much bigger than my right leg I couldn’t wear pants. A pair that fit my normal leg was too small to get onto my abnormal leg. And pants that fit my left leg fell down on the right side. Wearing dresses or skirts in the winter required tights or leggings, but I couldn’t fit my swollen leg into any of those. The swelling also extended to my foot so all the left shoes I had didn’t fit.

In the summer, skirts and shorts were cool and comfortable, but they exposed a distorted fat leg covered in a material that was a different color than my other leg. And the stocking was wickedly hot. I wore summer clothes anyway. More than a few people, mostly women, looked down at my leg, then quickly pretended they hadn’t. I usually ignored the rude gesture, but was occasionally so irritated that I stopped a few of them and said, “So what are you looking at?” That usually unnerved them, which made me feel better.

The only clothes I could wear were nightgowns and my husband’s sweat pants. So I just stopped leaving the house.

This nasty leg also compromised most of the activities I liked. The body fluids trapped in the vessels of my leg made it hard as a rock, so flexibility and suppleness disappeared. Pilates, skiing, yoga, swimming, riding a bike, sleeping comfortably, walking, even sitting in a chair became difficult. The degree to which I could bend my knee was limited. Because gravity is the enemy of leg lymphedema, by the end of every day, my leg was even more swollen. The only truly comfortable position was lying in bed, which is where I increasingly spent my time.

I reacted to all this with rage. I was mad at my leg. I was mad that my life was permanently diminished. I was mad that nobody knew this. I was mad at my radiation oncologist, my surgeon, and every doctor on earth who didn’t bother learning about this part of human anatomy. I was mad at the careless malevolence of the universe. I was mad randomly and without focus.

I have always believed that when faced with a terrible event or condition, there are only two choices: change it or accept it. But I couldn’t do either. I could feel that rock squishing me on one side and I kept pushing against a hard place on the other.

I became isolated and depressed and eventually did the only reasonable thing a brave, intelligent, and determined woman can do: I crawled into bed for two years, ate ice cream and M&Ms, watched HBO, slept, complained, and gained 25 pounds. But I also did some research. I scoured every piece of information about lymphedema I could find online. Unfortunately, all the information was hopeless, negligible, outdated, and sketchy. As my knowledge increased, so did my gloom.

I learned the entire inventory of facts that were available in 2010.

Lymphedema occurs when the lymphatic system is compromised, and bodily fluids are trapped in lymphatic vessels. There are two kinds: Primary, which is present at birth, emerges in puberty, and has no known cause, and Secondary, which is caused by removal of lymph nodes and/or radiation to treat breast or gynecological cancers.

By definition, lymphedema is almost exclusively a woman’s disease, and it involves women getting fat. Men, who control funding, have a passionate indifference to both those conditions. Which is why very little lymphedema research exists.

What data is available is, at best, an intelligent estimate. It is believed that about 35% of women who undergo lymph node removal and/or radiation for breast or gynecological cancer will develop lymphedema.

The only current treatment for lymphedema is MLD, which was developed in Germany in the 1930’s. There have been no advances in treatment since then. And it is only marginally effective.

If you get lymphedema you will have it for the rest of your life.

Lymphedema does not always occur immediately after surgery or radiation. It can appear years later. In fact, one woman developed lymphedema 30 years after her mastectomy.

Although lymphedema generally affects an arm or a leg, it can also occur in the breast, face, genitals, and head.

The limb that is not affected by lymphedema can still develop it up to 20 years after the initial onset.

Lymphedema worldwide occurs more often than Muscular Dystrophy, Parkinson’s, and AIDS combined.

If treated improperly, incompletely, or not at all, lymphedema can lead to chronic inflammation, cellulitis, skin ulcers, hypertension, immune suppression, or even additional cancers.

Radiation is a highly lucrative enterprise for hospitals. Three reliable physical therapists told me in confidence that radiation oncologists are frequently discouraged by hospital administrators from mentioning lymphedema as a side effect; informing their patients could decrease revenues. My own radiation oncologist discussed the possible complications of having radiation, but lymphedema was not one of them. She gave me a pamphlet listing all the side effects, but lymphedema was not on the list. When I signed the dense, small-print, 4-page contract releasing the hospital from liability for any damage done by radiation, it is possible that lymphedema was included, but I didn’t see it. Which gives a distorted meaning to the term informed consent.

Because cervical cancer is 95% curable, radiation was probably not necessary for me. In fact, my surgeon said,” There is no statistical evidence that radiation improves the survival rates for cervical cancer. But I think you should have it anyway.” I consulted a total of six doctors about the advisability of radiation, and not one of them mentioned lymphedema.

Because of advances in treating these cancers exclusive to women, the incidence of lymphedema is rising.

The American medical community has failed miserably in the prevention, diagnosis, and treatment of lymphedema. An entire anatomical system of the human body is ignored by medical students, resulting in highly educated doctors being highly ignorant about it. There is ongoing resistance in the medical field to learning about or discussing lymphedema. Physicians from entirely different fields of medicine promote themselves as lymphedema specialists. They rely on outdated methods of treatment, sometimes recommend diuretics, which can be harmful, and suggest regular elevation or exercises, which are both unrealistic and ineffective. And they make no effort to keep up with the few advances that can make a significant improvement in lymphedema. Doctors who treat breast and gynecological cancers almost always consider any problems after their performance outside the realm of their interest or knowledge.

The only professionals who are truly informed about lymphedema, and keep current on developments for it, are physical therapists, and massage therapists who have been trained and certified in MLD. But, particularly in America, they are traditionally considered less important than surgeons or radiation physicians, and less crucial to hospitals as revenue-producing employees. Doctors are known for a distinctive self-importance that dismisses nurses, therapists, auxiliary specialists and proponents of even the simplest alternative methods. Their ignorance and arrogance systematically deprive patients of the best possible care.

For decades in Europe, on the other hand, there have been entire hospitals that specialize only in lymphedema. They offer those who suffer from it four weeks of inpatient care, using the most up to date treatments.

Lymphedema causes severe psychological distress because it occurs randomly and without warning, it is disfiguring, unsightly, and uncomfortable, it requires care management techniques that are extensive and time consuming, and it causes major limitations in daily life, all of which contribute to lowered social interactions.

Because of all these factors, lymphedema is called Cancer’s Dirty Little Secret.
My efforts to be as informed as possible about a disease that had taken considerable pleasure from my life became a search filled with poison. What I learned did not enlighten me. It made me despondent and furious. Knowing nothing was a kinder status than knowing too much. So I retreated to the dangerous comfort of my bedroom, cursing and crying by myself.

Very, very lucky for me, my husband has steel in his bloodstream and great goodness in his heart. He took up where I left off. He read everything available about lymphedema. Consulted with every variety of medical expert. Contacted anyone who knew someone who knew someone who heard about new strategies. Researched the most ludicrous claims, the most absurd advice, the most remote resources, the most implausible assertions. And he followed even the frailest possibility to its logical conclusion, which was always a dead end.

In the midst of all this disheartening drek he found sporadic descriptions of new surgeries to lessen the effects of lymphedema. Like anyone smarter than an eggplant, he knew that the internet was a cheap, if not fraudulent and dangerous, source for medical information. But these reports, although unsubstantiated, were from medical centers that had credibility. So in desperation and with a rare and persistent love for me, he presented these obscure options and said, “Do you want to find out if any of this can help, or do you want to spend the rest of your life in bed?”

I had no faith in the former but no more tolerance for the latter, so I agreed to visit wherever these surgeries seemed viable. That began a two-year journey through every kind of misstep, falsehood, corruption, and disappointment imaginable, but it ended with a brilliant, unassuming, and dedicated miracle of a man. My surgeon and my radiation oncologist believed they had saved my life, a self-satisfied overstatement of partial truth. But this doctor, honest, determined, visionary, and without pretentious promises, saved my soul.