Using Humor

Posted: 13 May 2009 09:35 PM PDT

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Research

I recently spoke for the Butterfly Brunch, a benefit for lymphedema and lymphatic research. Jake Miles - The Lymphedema Documentary Project, and Wendy Chaite, Founder & President of the Lymphatic Research Foundation were also on the program.

Lymphedema is the Rodney Dangerfield of diseases. It gets no respect.

In December, when Wendy Sahli asked me to participate, I was clueless about the condition, but it affects, by some estimates 40% of the women who have breast cancer surgery that involves the lymph system. Any trauma to the lymph system has the potential to develop into lymphedema. There are others who develop it spontaneously, with no trauma to the lymph nodes.

The lymph system covers your entire body, similar to the blood system, except instead of a heart, muscle activity moves the fluid, eventually to the lymph nodes, where it drains. When there is a problem with the lymph nodes, the fluid can’t drain and the result is chronic swelling. Not usually fatal, but it certainly affects quality of life. When your left leg is twice the size of your right leg… it’s tough to find jeans that fit.

But if it is so prevalent, then why haven’t we heard anything about it?

Some doctors don’t believe it exists.

One oncologist told a breast cancers survivor, who had been diagnosed with lymphedema years earlier, that he had “never had a patient develop lymphedema after surgery.”

One doctor suggested to a woman who had lypmhedema in her right leg, that she was “losing her girlish figure.” Which may have actually been more precise than the next doctor who told her “I see nothing wrong with your right leg, but your left leg is atrophied.”

Evidently I am not the only clueless one out there.

“No respect! No respect at all, I tell ya!

How big does a leg have to get before someone pays attention around here!”

One woman suggested, that if more men developed the condition after prostate surgery that invloved the lymph nodes in the groin area, there would be much more attention paid to it. Of course, we decided, that would depend upon which part swelled to twice its normal size after surgery.

A number of people helped me do research for the program and I appreciate it very much.

Pam Waterman, has a publishing and writing business called The Discovery Box - whose tagline is “inventive ideas for food, fun and family” her recent books are specialty cookbooks for people in braces. www.BracesCookbook.com and her blog www.SilverSmileSurvival.blogspot.com

Chlorinda Cardillo, Shelley Musselman, Bonnie Pike (who inspired the post title), and Naava Platka, all were kind enough to talk with me about their experiences.

And Linda Malmberg, who runs a Lymphedema Support Group in St. Louis, Missouri, pointed me to these websites for more information:

StepUp-SpeakOut a site recently created by a group of Lymphedema patients for the purpose of providing a “one stop shop” that patients can refer to for their resource needs.

NLN - National Lymphedema Network. An organization which provides research articles and ongoing resources for both patients and lymphedema therapists.

Article on “Understanding the Lymphatic System“ provided by the Lymphnotes Forum

BreastCancer.Org Lymphedema Forum where patients with lymphedema can ask questions and discuss their issues living with lymphedema.

So to the “Swollen Chosen” and all you “Swell Gals” out there.

Thank You! Stay Small!