Total Page Views

StepUp-SpeakOut.Org BlogSpot

Hello and welcome to the StepUp-SpeakOut.Org Blog Spot.

We will be using this blog for fast updates on news and information in the field of Secondary Lymphedema as a result of Breast Cancer.

We will be posting articles and information on new research and treatments, legislative and insurance information, and other pertinent information, and invite your comments.

Tuesday, October 30, 2012

My Fat Arms--Writing about LE


My Fat Arms
I would like to tell you about my fat arms, but it’s tricky. I’m afraid the tale will have you yawning with boredom, shifting in your chair wondering if there isn’t something else you’re supposed to be doing. You’ll get up to pour yourself a cup of coffee and never come back. So I have to think twice before I tell you that something has gone terribly wrong with an entire system of my body, a system that most people (and a disturbing number of medical professionals) have barely heard of and never studied.

There are reasons for this neglect. Though this system consists of a network of veins that thread all through our bodies—both directly below the skin and ever deeper and deeper into the very core of our being, servicing all the organs and body parts you ever memorized in sixth-grade science class—the fact remains that every tiny, pulsing micro-meter of it is practically invisible. And besides, it has an ugly name: the lymph system. Rhymes with nymph. Sounds like limp, or even lump.
You have felt your own lymph nodes, those pea-sized swellings in your armpit or groin when you have an infection somewhere in your body. Once the infection is over the nodes dwindle and disappear from your consciousness. That’s all most people know about the lymph system. That’s all they care to know. The lymph system does not inspire wonder.

But it should, because it has everything to do with staying well. The lymph network is the body’s dump truck. Those nearly invisible vessels that course from head to toe and everywhere in between are there to collect cell junk—bacteria, rogue cancer cells, even stray tattoo ink escaped from its intended place on the skin—and truck it to the nodes, where it’s rendered harmless or dispatched outright. They gather this junk by slurping up the body fluid that contains it, delivering it to the nodes, then returning it, cleaned and safe, into the circulatory system. Brilliant.

Which brings us right back to my fat arms. Are you still with me? Good, because we’re just getting to the heart of this matter: my lymph system has lost some of its capacity to slurp. Its pace has slowed, dulled by damage to the nodes in my chest and armpits from my cancer surgery and radiation. The body fluid accumulates, and my sluggish lymph system can’t collect it all. So it hangs out beneath the skin of my arms and chest, inflating them as though they were parts of a Macy’s Thanksgiving Day Parade balloon. Popeye arms, Mickey Mouse hands. Can I adjust to this perspective, alien and gawky, tethered just out of reach of the everyday world?

This ballooning is called lymphedema. I will learn ways to control it, but the damage is permanent. I’ll need to ignore the stares and questions, manage the pain of swollen body parts and develop new skills. For now, the cancer battle has been quelled, the treatment frenzy quieted, but the collateral damage involves disabilities I could never have imagined.
* * *
“When I grow up,” says our autistic son Tony, heedless of the fact that he is already 30 years old, “I want to drive a garbage truck.” And why wouldn’t he, since it’s huge and powerful and makes an impressive roar and rumble, while it cleans up the environment and carries off everything that would otherwise sit rotting in the Arizona sun? Garbage truck drivers are environmental heroes, and they have the imposing equipment to back it up. With his assorted disabilities Tony is never going to hold a job, much less one that involves responsibility for a behemoth like that. It is hard to be both honest and encouraging about this dream of his, but I try. I nod and say, “That would be exciting, all right.”
“You’d sure be surprised if I drove one home and parked it right in front of the house,” he says.
“I would.”

“What would all the neighbors say?” He’s smiling, relishing his private vision of the sidewalks lined with cheering neighbors gaping at his new-found might. He’s silent a moment, considering, and then, “Would I need a driver’s license?”

I nod again.

“But I don’t have one,” he says.
And he never will, so what is there to answer? “You could draw a garbage truck,” I try, “with you in the driver’s seat.” In Tony’s prolific artwork his vehicles all have personalities, sly or shy, fierce or furious. He doesn’t answer me, at least not with words. His eyes lose their light, though, and the conversation is clearly at an end.
* * *
If I tried to tell you what I have to do to move the swelling out of my arms and keep it that way—if for instance you came by one desert-hot afternoon, settled onto the couch with a welcome glass of cool water, ice clinking against the sides, and asked about my fat arms—when I started to answer, you would gaze down into the glass and swish the ice cubes in slow circles, and I would understand you were waiting for me to change the subject back to something more captivating.
So I wouldn’t tell you how it begins with five boring weeks of daily visits to a specially-trained therapist. She starts each session with an hour-long massage as intricate as the choreography for Swan Lake, minus the splendor and grace. The direction of each stroke matters, and so do the movements of her hands—cupping, smoothing, working delicate half-circles in precise patterns. Her touch is kitten-petting gentle, so as not to squish the tiny lymph vessels lying just beneath the skin, but rousing them instead to move the lymph fluid back toward the center of my body. And the pace is slow, with the slug-like rhythm of “Sunrise, Sunset” from The Fiddler on the Roof.

“Is this the little girl I carried?
Is this the little boy at play?
I don’t remember growing older…”

That slow.

After that she lotions each arm and wraps it in assorted medical-grade materials. Stockinette first, smoothed to the contours of my fat limb, and gauze to wrap my fingers, one by one. Then a sheet of thin, rolled foam that spirals up my arm from palm to armpit, followed by overlapping layers of short-stretch bandages, 16 feet long and medical-beige ugly. All of that helps the pumping of the lymph fluid, reducing the swelling even while I sleep. And as she does these things she teaches my clumsier hands to do them too, so I can spend a significant part of every day, for the rest of my life, doing the same at home.

Once the swelling is reduced the therapist fits me for compression garments—skin-tight sleeves, gloves and a vest—that I will wear every day. In every weather. For every occasion, whether casual or formal. Which is a concept I may never get my mind around.
* * *
“Okay,” says Tony, apropos of nothing, as he sets the dinner plates around the table. “So, how about a pick-up truck?”

I know where this discussion is headed and pretend I didn’t hear him while I think how to handle it.
He’s patient, but persistent. Within a few minutes he’s moved closer to me. “How about a pickup truck?” he says again, still not looking at me. When I don’t answer at once he adds the close to his remark: “I said.”

“You said that, yes.” I can think of no way to soften the blow. “There’s still the question of the driver’s license, though.”
He presses his lips into a flat line, and his brows furrow so deeply his dark eyes all but disappear.
* * *
I ask myself if I’d have been any more interested than you are in hearing about lymphedema before this happened to me, but I honestly can’t guess. I’m not even sure I would have believed it if a fellow cancer veteran had tried to explain her own experience of lymphedema. Did this person misunderstand something her doctor said? I’d wonder. How can this even be important if no one has ever heard of it?

Now that it’s me, though, I’m living this strange reality in which the crush injury of a blood pressure cuff will cause further damage to delicate lymph vessels, and injections or lab tests unbalance the careful choreography of lymph flow into and out of my limbs. Repetitive movements are off limits for me now, as is leaning my weight on my arms: no more crocheting or spinning wool, no more yoga downward dog.
* * *
“A golf cart, then,” says Tony, days after our pick-up truck discussion. “I don’t need a driver’s license for that.”

“No, I guess not,” I tell him. “But you’d have to play golf.”

He ponders that a long moment. “A bike, then,” he says, and this time he’s peering directly into my face.

We’re bargaining, bringing lofty dreams into synch with our limiting realities—his and mine both. I want to give in and say yes, but his lack of critical judgment makes solo riding a nightmare. “Remember when that car rolled right over you?” Miraculously he wasn’t hurt when a neighbor backed out of his drive, right into Tony’s path. Boy and bike disappeared beneath the chassis—fortunately directly between the wheels. That was years ago but the memory is vivid. His eyes narrow, and he nods.

“A tandem,” I counter then. But as soon as the words leave my mouth I realize I’ve gone too far. When I lean my weight on those handlebars my arms will swell despite the hours a day I spend tending my traitorous lymph system.

“Okay,” he says, surrendering. “A tandem.” He flashes me a shy smile.

Suddenly nothing else matters—not the lymphedema, not even the autism. We’re going to make this work, Tony and me. We’ll figure out how to raise the handlebars and keep the weight off my arms. I’ll do the steering, but it will be Tony behind me, providing the pedal power, feeling the bracing whoosh of wind as we race along.

Maybe it’s not a garbage truck, but if the neighbors never line up along the sidewalk to cheer as we ride by, they’ll be missing a beautiful thing.

If you'd like more information about breast cancer-related lymphedema, for yourself, a friend or a family member, please visit

No comments: