hereforthegirls | 2014 February
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, February 14, 2014 | More Post by

Hennahead2How do You Wear a Lymphedema Compression Sleeve with Style and Subtlety? You Don’t
By Ami Dodson

One of the many challenges and frustrations of having a chronic condition that mandates wearing a visible device every day is when that disability is relatively unknown outside the breast cancer community. Imagine that you had diabetes and needed an insulin pump to regulate your blood sugar. Someone might catch a glimpse of your pump under your clothes and ask what it is. “An insulin pump,” you’d say, and the conversation could be over.

Now imagine that you have lymphedema and you must wear a compression sleeve every day, and a tighter compression sleeve when you exercise or fly in airplanes. Imagine you are in a yoga class, focusing on your Ujjayi breath, when suddenly you hear the instructor say, “You there – you in the back! Yes, you. What’s that thing on your arm?”

Flustered and aware that a room full of strangers is now staring at your misshapen figure, you stammer, “Uh, um, a compression sleeve.”

“What’s it for?”

“I, uh, I have lymphedema.”

“What’s that?”

“It’s a chronic condition that involves swelling of the extremities due to insufficient lymphatic fluid movement throughout the body secondary to removal of the lymph nodes and common in women who have had mastectomies to combat their breast cancers. Shouldn’t we all come out of Warrior Two now?”

Okay, that last bit is an exaggeration, but the first part of that exchange really did happen to me during a yoga class. The instructor was tactless and callous, but the real problem for me is that there is no easy answer to “what’s that thing on your arm?”

Variations of that conversation happen to me all the time, mostly by well-meaning people who assume I have sustained some minor injury, like spraining my elbow, and are legitimately concerned about my well-being. Although one person asked me if it was a cover to hide embarrassing tattoos. At a cocktail party. For my work.

It’s been a challenge for me to come up with something to say that is polite and clear, but also firmly conveys that this is not a conversation I wish to have. It’s never easy to discuss your breast cancer with casual acquaintances, and there is really no way to avoid going from “I have to lymphedema” to “I got it because I had a double mastectomy.” And yes, there was chemo. And yes, it was awful. And no, I do not want to hear about your second cousin twice-removed who had breast cancer and cured herself using only vitamins and meditation. Amazing!

All of this is compounded by the fact that the sleeves are ridiculously ugly. (Yes, I know about LympheDivas – they are fantastic, but unfortunately, they don’t fit me, so I’m stuck with the Medi brand sleeves, which are unattractive in a way that only a true medical device can be.) You can’t wear long sleeves all the time because it is difficult to fit your enormous arm into your regular size clothes. So you have to buy one size larger shirts to accommodate your arm, which makes the rest of your torso look like you either borrowed your mother’s clothing or don’t know how to dress yourself. So you start experimenting with sleeveless tops or tank-dresses and we’re back to the original problem of the ugly compression sleeve. And that it’s winter and you’re freezing.

So what’s a girl with lymphedema to do? My personal solution has been to invest in a lot of very sparkly jewelry that makes me feel glamorous no matter what monstrosity is on my arm. 12-27 Bracelet I am however, still looking for a good, short answer that would have shut down my embarrassing exchange with the yoga instructor.

Have some ideas? Fabulous. Leave them in the comments and let’s have a conversation on our terms, on our time, in our community. No downward-facing dog required.

Namaste.

Related Reading: On Lymphedema, Serial Killers, and Therapeutic Torture Devices

, February 08, 2014 | More Post by

My Lymphedema Experienceami-rectangle300x366
By Ami Dodson

One sultry morning in July 2010, I sat down to watch an episode of Dexter. I was about two-thirds of the way through my regimen of chemotherapy for Stage IIb breast cancer, and I found something soothing in the blood-drenched gore of early Dexter shows. Plus, if I took my pain meds during the opening credits, by the time Dexter had sliced, diced, and dumped someone in the Miami Bay, my pain would have abated and I would likely feel well enough to shower. Or walk to the mailbox, if I was really up for a challenge.

It Started with a Tingle

Anyway, on that particular day, as the glorious Michael C. Hall fried up his steak and eggs, I felt a funny tingling in my left arm. “Huh,” I thought. “That’s weird.” By the time I watched Dexter Saran-wrap some notorious villain to his table and commence dismemberment, I realized my left arm had swollen to gargantuan proportions. “Well,” I said to myself, “that was fast.”

I quickly scheduled an appointment with a physical therapist and lymphedema specialist after my arm ballooned up to four times its normal size. They took my measurements and said, “Yup. That’s lymphedema.”

Quick Lymphedema Tutorial

A quick tutorial for the uninitiated: Secondary lymphedema can affect anyone who has lymph nodes removed from nearly any part of their body. Women who have had mastectomies with lymph node removal are particularly high risk. When I had my double mastectomy in April 2010, the prevailing wisdom was that the surgeon would check your sentinel lymph node, the one closest to your breast ducts, and if there was evidence of disease they would remove the entire cluster from under your arm.

In my case that turned out to be 19 nodes, only the first one of which had microscopic disease. A few months later, the standards changed: Even if a positive sentinel node was found, surgeons would remove only those nodes that had evidence of cancer, leaving the rest in place. This less aggressive surgery significantly decreased the risk of lymphedema.

I’m not going to linger too long on the causes, risk factors, and percentages of lymphedema among breast cancer patients. You can read about those here (http://www.cancer.gov/cancertopics/pdq/supportivecare/lymphedema/patient), or here (http://www.lymphnet.org/), or here (http://www.mayoclinic.org/diseases-conditions/lymphedema/basics/definition/con-20025603). I’d like to focus instead on my own experience and my efforts to control my condition, rather than letting it control me.

Of Sleeves and Wraps and Machines

After a consultation with the lymphedema therapist, I was fitted for compression sleeves and taught how to wrap my arm in bandages. The initial treatment, an attempt to reduce my swollen arm to just two or three times its normal size, involved wearing “wraps” about 23 hours per day. These wraps made my arm look mummified and were a colossal hassle to put on, take off, wrap up, wrap off, etc. I was “fortunate” my first flare-up was over the summer. It is impossible to put a sweater on over these things. 09-12 Lymphadema Bandages I also had to see the therapist every day for an hour, four or five days per week, for manual lymphatic drainage. And I had to learn how to self-massage my arm in order to move the collected fluid out of my arm and into the rest of my body.

When the lymphedema got really bad, I was fitted for a Compression Machine. (See photo.) This torture device involved lying perfectly still for an hour while a series of tubes and air pressure pumps massaged my entire left side. Creepy, weird, uncomfortable, and unsustainable. How many moms with kids under the age of five do you know who can lie still for an hour a night before bed? That’s right: none.compression-machine2

Chronic but Survivable: Time to Thrive!

Finally, after months of intensive therapy, daily maintenance, endless doctors’ appointments, and chronic pain, my lymphedema stabilized. I still wear a compression sleeve every day, but I’ve stopped wrapping at night and using the Machine. I have flare-ups when I fly long distances or when the weather turns hot and humid. The pain is chronic but manageable.

Now, three years later, my lymphedema is under control but by no means resolved. After that dark day in July, I commenced what would be a long, difficult, painful journey toward managing a chronic condition. A journey that, unfortunately, I am likely to be on for the rest of my life.

BUT! I am alive and intend to stay that way for many years to come. The lymphedema is a bitter reminder of what I went through to overcome breast cancer. But it’s also a reminder that I did come through. I did survive. And I will continue to thrive.

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Next post! Next week I’ll share some lymphedema tips and tricks and offer some photos of my favorite compression sleeves.