Advocacy and lymphedema sleeves

Yesterday, Susan made a big announcement.  She is one of my cancer sisters, founder and co-contributor at Mothers with Cancer, blogger at Toddler Planet  and Women in Planetary Science and friend.  She is also an astonishing advocate for, well, everyone. 

Susan has  lymphedema in her arm as a result of having lymph nodes removed from under her arm during her mastectomy.  It’s a real issue.  Lymphedema causes swelling in the affected area due to the build up of lymphatic fluids.  Once swelling has occurred it can really only be reduced a certain percentage.  In other words, the area will never again return to normal size.  The trick is to keep the are from swelling in the first place.  This is where  LympheDIVAs come it.  They have taken a sterile, ugly medical appliance and made it beautiful:  the compression sleeve.  I can’t imagine what it would do to my self-image if  I had to wear something like this all day, every day (not to mention what it would do for my hot flashes!).

   

When you buy a sleeve from LympheDIVA, though, you can make it your own, match your outfits, show your personality, feel beautiful. 

 

   

Of course, there’s a price for beauty.  Isn’t there always?  And LympheDIVA sleeves aren’t cheap.  In fact, as Susan’s lymphedema Therapist pointed out to her, many women can’t afford to buy sleeves at all, which causes the tissue in their arms to harden.  Here’s part of an email Susan sent to me:

Last month, I was lying on the table having my arm worked on as my lymphedema therapist tried to reduce the swelling in my arm.  I try to zone out a little, as it’s not all that comfortable, but we got to talking about my pretty lymphedema sleeves, which you guys have seen me wear around town and at BlogHer. 

Apparently, I’ve been living with my head under a rock, as I was surprised to hear her say, “so many of my patients can’t afford lymphedema sleeves, and their arms are so much harder.  The tissue actually changes, and their arms are stiff or puffy no matter what I do.”

Can’t afford lymphedema sleeves?  Well of course that’s true, isn’t it, as they cost $100 and up for each arm, and it’s important to have two sets – one to wash, and one to wear.  I started rolling solutions around in my brain.

So, being the giving woman and problem-solver that Susan is, she began looking for programs to help those in need in her little corner of the world.  She found none.  By happenstance and good connections, she was introduced to a foundation, Crickett’s Answer, who agreed to work with LympheDIVA and donate some sleeves and gauntlets for women in need.  Next thing you know, $12,000 worth of  lymphedema sleeves are now available through Crickett’s Answer for these women!!!

This is awesome!  Wonderful!  Amazing!  And generous!  But here’s the part that floors me.  Susan, is not just a cancer survivor, she is a current cancer patient.  She has two small boys at home, she works for NASA, and she’s had a recurrence of  her Inflammatory Breast Cancer.  She mothered and worked and rested throughout the spring and summer while she also underwent chemotherapy and radiation for a regional recurrence.  Now, this week, while making numerous phone calls to foundations, organizations and businesses in order to help other women , she had a PET scan which revealed six small spots on her lungs. 

I am heartbroken.  For me and for Susan and her family.  For the world really.  Susan is one of the good ones.  She is tireless in her advocacy.  She is dedicated to her family and her work.  She is generous to a fault.  And she will more than likely die of breast cancer. 

The bright spot in this scenario is that Susan is creating a legacy of epic proportions.  (Yes I said “epic”  even if it is a banished word!  I’m a rebel like that.)  She is raising the bar.  She is a role model in every sense of the word.  She is that better person that makes me want to be one, too.