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Columns
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 stepup-speakout.org




Thank you again - this time not only for the touching story and the beauty of its telling, but for the much needed information you give to a public in such need for it.
Moving and gorgeous writing. I never wanted to go off for a cup of coffee. You had me and held me from beginning to end.
You have made me cry, and that isn't easy. It isn't the specifics, it's the verbal illustration of that piece of life: finding the way through our own obstacles and our children's to buy a moment of wonder and/or joy. I know that dance, even if the tune I dance it to is a little different. Best wishes.
"The lymph system does not inspire wonder." I'm not so sure about that...at least for those of us whose own fat arms leave us wondering in so many ways. We wonder how it is possible to be so totally surprised by lymphedema, when some 40% of breast cancer survivors develop it within three years of breast cancer treatment. We wonder why the likelihood of developing lymphedema was not deemed serious enough to give us accurate risk counseling and risk-reduction education during our breast cancer treatment planning. We wonder why the simplest steps to facilitate early diagnosis and better treatment outcomes are off so many providers' radar screens. We wonder why our damaged lymph systems require such expensive treatment, yet are seemingly undeserving of adequate insurance or Medicare coverage. Thank you, Bonnie, for writing about lymphedema in a way that will leave many readers wondering why they never heard of it before, and prepared to pass this seeming secret along to friends and loved ones whose own breast cancer diagnoses put them at risk.
Thanks for trying to explain this mysterious condition. It is one of the surprising side effects of breast cancer surgery that no one really warns you about. Even when it occurs, we have to fight to have it recognized and treated. It is time to get it out in the open and on people's radar. I hope you and your son do eventually get to take that bike ride!
Thank you for spreading the word.
Bonnie, you are so gifted in your ability to explain the most complex and least understood aspects of medical and emotional difficulties. I am more deeply grateful than you can imagine that you take the time and make the effort to open our realities to the world. Thank you! Dawn
Thank you for sharing such a beautiful story of a mother and son's relationship and also for helping to explain about Lymphedema. I was someone who was told not to worry about lymphedema. The chances of it happening to me were very small. So I didn't worry, and I didn't ask what to watch out for. A few months later, I had and now continue to have, my own odd-shaped fat arm. Please, I encourage everyone reading this to pass the information along. Lymphedema is a serious life long, life altering condition we all need to be aware of.
Beautifully written...While I was drawn to read it because of my own fat arm, it was the mother/son dialog that brought tears to my eyes. Blessings to both of you...
The learning curve for understanding lymphedema is steep. It's even more difficult to explain to our uninformed doctors, spouses, family and friends. Thank you for taking the time to to do so in such a way that enables readers to listen and want to understand. I had only one lymph node removed (sentinel node), yet I have lymphedema in one side of my chest and arm. On the other side where no node was taken, I have some swelling as well. I was told my risk for getting lymphedema was practically nil. There is so much women need to know about their risk for developing LE as they face cancer surgeries and treatments. It's not just about the method by which nodes are taken (sentinel vs axillary dissection) or how many nodes are taken (none, one, or 24). The best time to learn about lymphedema is before you have it.
One wouldn't expect to find such beautiful words written in an article titled My Fat Arms. Those of us with Lymphedema know that the joy of an activity that increases our swelling or going without compression garments when we dress for a special occasion will mean that we will experience discomfort for days. We will also have to invest more time in lymphedema massage and exercises during the following days in order to decrease our swelling and our risk for a serious skin infection. But when I picture you and your son on a tandem bike, I know that some things are worth it!
Sadly, I lack the eloquence of such superb, gifted writings or I would spell out my thoughts in a different way. I am an experienced lymphedema therapist, not a writer, and in treating nearly 400 patients with lymphedema, I have never heard it so in-depthly described. Subtle, yet complete. No crying, no complaining -- just acceptance, with family needs taking greater priority over one's own difficulties. This is the mark of a true champion of the family, a hero of the lymphedema world. God Bless you, B.L. Pike, for who you are and what you do.
As I read your story there was no thought of stopping for coffee -- I didn't want to miss a word of what you had to say. Your gentle, patient kindness in helping a child who is coping with problems is a role model when so many others might have said, "Go play, Can't you see that I have problems of my own! First it was the breast cancer and now with this ##@*@ lymphedema -- It is too much, too hard. Instead, you are an ideal role model that all of us with lymphedema might well adopt.
Wonderful writing and good visualization. This story put me right in the middle. Kudo's for being a great mom and also proactive in your health. JH
thank you for your efforts..i hope those who need to hear it...ive had lymphadema in my leg for two yrs..has been swelled for a yr now..my insurance wil only cover 20 visits, they didnt get it all the way down, i needed more..so therefore im still swelled..my dr. dosent even know a thing about this problem..hes givin me lasix and me telling him it isnt helping..i dont know what to do, ive been so depressed over this and the insurance company i could scream..thanks for listening...God Bless you . carol
Bonnie, What a beautiful story. I am impressed on how you weaved two huge life problems together while making sense. You have a phenomenal gift that you have shared along with your unselfish love and caring. You are an angel and I miss you! BTW...I still have my cactus! Love, Shari
Such a beautiful story illustrating the pain and beauty that cancer brings. I finished treatment for breast cancer this April and I've met the most wonderful people. Adapt and over come!
Thank you for your beautiful words and example!
An informative article,sensitively written on a subject we know so little about unless we have 'fat arms'. I will forward your helpful words to a friend who came upon lymphadema unexpectedly following surgery for breast cancer. Specialist help is available in UK but in very short supply and hard to find. Yet another frequently occuring medical condition which needs a higher profile and better understanding. Jan Devey Suffolk UK
What an amazing writer!You intertwined the two stories beautifully. I look forward to reading more.
I have had Lymphedema for three years in my left arm. It's a pain. I know all too well the trips to the physical therapist and then the management at home. I have to say that I have been rebellious lately, not doing the massage and not wrapping my arm at night. Some days I don't even wear the compression sleeve. I think, eventually, you get bandage fatigue. But as the days are growing colder and my sleeves are growing longer, I will have to get better in order to wear my warmer clothes. Hang in there,its an annoyance and so much more, but eventually it becomes just a thing.
I have primary lymphedema, bi-lateral in my legs. The dreaded "buffalo bump" on the tops of my feet were 3" high. I too went to therapy and learned how to manage. My husband went to help and learn. We do the MLD, manual lymph drainage plus the massage and the exercises. I also have compression garments I wear daily, even in 114* weather. I have other health issues too. I waited 3 years for someone to diagnose what was wrong. But it is working. So long as I do everything, it works. Not that anyone will see it. But I can feel the difference. My legs don't weigh so much when I walk now. Thanks for sharing.
Once again I am awed by your unique way of capturing and attacking the issues with so much knowledge and understanding of both lymphedema and autism. You are not only a great writer but also a great teacher, I know you have helped so many people and continue to do so every day because that is who you are.
As I learned about how lymphedena was going to influence my life, I fought against losing the freedom to just do anything I wanted whenever I wanted. Simply folding a load of laundry (repetitive action)takes hours. so, the laundry that used to be a morning task is now an all day event. Never mind making cookies - stirring batter is guaranteed to make my arm swell. Maybe I need to focus more on the things I can do and not dwell on the garbage truck. Thank you (tearfully).
I fought cancer and got lymphedema - it sucks! But you have to go on and live your life. Choose your attitude, ignore the stares and know things could always be a lot worse!
$@!?###%* has been my initial response to finding out I had Lymphedema. Assurance, reassurance by both PS, and BS that I wouldn't get it. Sentinel nodes on both sides..."there is no way you'll get LE" I was assured..I explicitly asked. Repeated denials after the swelling. $@&#! Someone? Anyone?! Help! Acknowledge! Thank you, Bonnie, for putting so eloquently into words what I cannot. For so many of us we're too angry, too overwhelmed, too battle fatigued to explain, to fight. Thank you. Thank you for sharing, for your wisdom, your perseverance, your patience, all your help along the way.
And thank you too for sharing that you can still LIVE and not let this $&#!? condition take away the most important things. :) Thank you!
What an eloquent way to describe what those who have LE go through.... giving up dreams of being ' regular" ( like Tony) little by little by little. But those courageous ones- like you , find a *smaller* dream , and meet the challenge to realize it. Thank you so much for spreading the word. INSPIRATIONAL!
Thank you so much for helping people realize what LE is, and how much it affects quality of life for so many people. I am continually amazed by how much the medical community ignores, downplays, and mistreats this increasingly common side effect.
Thank you Bonnie for sharing your experiences and trials of lymphedema. Battling cancer is a tough fight and sometimes we don't realize or understand survivors will still endure the effects of treatment their entire lives. Your words are important for us to receive and again thank you.
Thank you for sharing. My Lymphedema is in my legs, truly daily challenges abound around every corner and acceptance isn't met with the same grace as you have endured.
Really deft touch in the writing.I love the tone of this.
Thank you so very much, for this moving, informative and inspirational article. I've lived with breast-cancer related lymphedema since 1980 and learn more about it every day. You are an Earth Angel my dear. Love and Light!
I admire so much your seamless weaving of the two stories, drawing us in to your own struggle -- especially with how people 'look' at you -- before you reveal your son's struggle with his limitations. As for bicycling, I immediately thought of the 'cruiser' bikes I see all over where I live -- in LA, near the beach, where there are so many different kinds of bikes. The cruiser are like (my) old fashioned 'sit up' bikes where the handlebars are high so you don't have to rest your weight on them. Maybe they make tandem bikes. Thanks, Bonnie!
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