Lymphing Along

I’m going to get serious for a moment because October is National Breast Cancer Awareness month, and arm (and truncal) lymphedema sometimes go hand in hand (ugh!) with breast cancer. Though current breast cancer treatment methods seem to be helping lower the risk of getting lymphedema.

I want to know when are they going to have National Lymphedema Awareness Month? What's it going to take to make the public aware of this condition that's so closely related to cancer surgery? To help spread the word, do I have to let the swelling in my legs become worse so the public will stare at me and wonder WTF!?! And then I can explain what the condition is? Maybe my butt will become a walking billboard...(never mind).

To be fair, there are Lymphedema Awareness Month(s) in the states of Connecticut, Nebraska, Virginia, and then (leave it to) New York (who) threw a monkey wrench in the whole awareness-month-idea by listing Oct 17th as New York State Lymphedema Education and Awareness Day (though the last citation I could locate for that date was in 2002 - guess the idea of awareness sort of died [no pun intended] down since. Then again, maybe everyone in New York State knows about lymphedema and doesn't need any more education and awareness.) In all states celebrating lymphedema awareness the actual awareness month is March, which makes total sense to me because I was born with lymphedema in the month of March and ultimately everything revolves around me.

I have primary (meaning born-with) bilateral (meaning both legs) lymphedema which is somewhat rare, though many people get lymphedema as a result of surgery, and then mostly cancer surgeries. Anytime the lymphatics are disrupted, the result can be lymphedema. I tried to ignore my own lymphedema but when you ignore lymphedema it only becomes worse (bigger) and sometimes worse turns into infection and infection can turn into death if the infection is not treatable. It took me close to 50 years to understand the concept that someone had to do something to take care of me and only a few moments to realize that someone better be me. I'd sort of psychologically cut myself off at the waist and hoped no one would notice; yet the irony in this (for me only) is that the bottom half of my body is the biggest half and not something that goes easily without notice. But you won't see any pictures of my bare feet or legs on this blog because ewww. Two years after finally acknowledging I had a bottom half, and making a decision to take care of that bottom half, and honoring my decision came a uterine cancer diagnosis, cancer surgery and lymph node removal.

Photo courtesy of the Mayo Clinic

I would give my right leg to have a left leg that looked like that!

Managing lymphedema takes time. Patients might get a form of massage (known as manual lymph drainage), use compression pumps, use compression bandaging and visit clinics. Exercise and diet are vital as is attending support group meetings. It's really a full-time job (which is why it took me until mid-life to decide I had to actually start taking care of myself -- after all, I was busy doing other things, working, raising kids, pretending that I was fine). Lymphedema requires a lot of dedication and a very motivated patient. Anger helps too. At least anger helps me with my own motivation.

I was wondering if any celebrities (other than myself, of course) have lymphedema? I know Elizabeth Edwards has it (probably got it when John cheated on her!) but she's not a real celebrity. Does she attend a lymphedema support group in her area? And if she attends, is she sitting next to other famous or quasi-famous celebrity types or regular people? Or does she stay home and pretend she's fine (like I used to do)? I'm thinking she stays home because we don't hear or read much about her lymphedema though it would be swell (did I actually use that word?) if she felt well-enough with her own cancer and lymphedema diagnosis to go on the stump (so to speak) and bring some much needed public awareness to this disease.

In my research for celebrities with lymphedema, I googled Cheryl Crow, a breast cancer survivor and found no connection. I googled Christina Applegate because I heard she had her breasts removed and found nothing. I am beginning to wonder of all these famous folks that "come out" about their assorted cancers so courageously, who among them is hiding their lymphedema from the public eye?

Arm lymphedema, right arm.

Courtesy of the Jacksonville Lymphedema Clinic

Then I wondered if I were a celebrity how would I hide my biggest parts? Make-up? A stunning red carpet gown? Permanent voice-over work? If I had breast cancer (or any cancer) and resulting lymphedema, but didn't want anyone to know I had lymphedema because of the stigma attached to the illness with swelling and deformity, what would I tell my fans? What would the article in People magazine read? What kind of treatment could I afford if I couldn't afford to let it be known that I was being treated?

After living with lymphedema for my entire life, I am finally a compliant patient. If you have lymphedema, don't feel sorry for yourself for too long because it's easy to fall into the woe is me dumpster. Learn to be compliant. Educate yourself and be angry if you want. You can use the anger to rally against the disease and not let lymphedema become who you are. But most importantly, don't let lymphedema become the biggest part of you.

Me in Baja, CA, Nov 2006 at the beginning of therapy (again).

(Don't go to Baja in Lymphedema bandages - just a suggestion)

Still Life with Tequila & Bandages

P.S.

Many, many thanks to Miz at Mizfitonline.com for listening to me bitch about this subject (as well as other subjects) and for offering a spot to guest post on her blog so I can bitch at you too.