How I Stopped Hating my Lymphedema Sleeve

It has been almost three years since my double mastectomy, where 27 lymph nodes were taken from my right armpit. Before my surgery I had heard the word lymphedema but I didn’t really know what it was. But, I did know I didn’t want it! To quote Kathy Bates on a recent Dr. Phil episode, when she found out she had lymphedema, “You think American Horror Story is scary?” The idea of losing function in my dominant arm, the thought that it would ache due to swelling, and forever asked what I did to my “bandaged” arm, was scary!

Leading up to surgery I was referred to a physiotherapist who specializes in lymphatic drainage. I was in good hands because a lot of her patients have been diagnosed with breast cancer, so she is very knowledgeable. I thought I was going to her to work on my range of motion post surgery but she immediately starting talking to me about lymphedema (and I’m so glad she did).

High Possibility of Lymphedema

Lymphedema was a good possibility for me because so many lymph nodes were taken out of my armpit. I started doing everything in my power not to get it – self-lymphatic massage to retrain the lymphatic system on how to drain my arm, also wearing a preventative compression sleeve (picture compression socks but for your arm that go from wrist to armpit) and gauntlet (a compression glove without open fingers) during the hot summer and while working out, and made sure not to have blood or blood pressure taken on my right arm. Then about a year after surgery, it was officially diagnosed – I had lymphedema.

I had to go from a preventative sleeve to the real deal, a tighter sleeve to compress my arm even more. With diligence of wearing my sleeve everyday, especially while working out, and going for lymphatic drainage massages, it eventually remained stable. I held fluid just above my elbow but it was not noticeable to the naked eye, so I was happy with that. I only had to wear my sleeve while working out or going on a plane; a huge win for me.

Since my mastectomy my sleeve has been a part of my exercise uniform; until I forgot once – in three years! Just a couple weeks ago I arrived at the gym without it and I didn’t have time to drive home before my class started (and I’d be out $25 if I didn’t show up) so I risked it. Well, by the next day, the tingling reappeared and this time my fingers, hand, and forearm were visibly swollen. I was so disappointed! Throughout my cancer experience, I have taken several steps forward to just fall back again. When am I not going to be a cancer patient?

Luckily, I had an appointment with my physiotherapist that same week (to deal with a hip injury that has nothing to do with cancer). I told her “I have good news and bad news. The good news is we know the compression sleeve is working because the bad news is my arm is swollen!” She told me that I must boot camp it now by wearing my sleeve daily again (NOOOO!!) and taping my fingers with a special compression tape in hopes of getting to a stable place again in the future. (Already the swelling has decreased).

I wanted to write this post for all of you who are worried about or have lymphedema because there are a lot of us out there! Having lymphedema is not fun or easy and a symbol that life has forever changed. Every time I put my sleeve on at the gym I feel small, like people are staring at me because I’m the cancer patient. Or they are rolling their eyes at me because they think I’m really into optimal performance (yeah right!). The first time I had a new coach at the gym he actually complimented my sleeve. I took that opportunity to educate him because it is not the same as a sleeve that a high performance athlete would wear. Also,when I wear my sleeve out in public, people think it is an invitation to ask me what I did to my arm and then continue by giving me tips on how to deal with the swelling (like, have you heard of dry brushing?).

Lymphedema Was Still Worse In My Head

With all that said, lymphedema was still worse in my head. I know I’m lucky because my case is not as bad as it could be but I’m constantly aware of it and working on bringing the swelling down. I don’t hide my sleeve anymore and I answer strangers’ questions because the next time they see a young woman with a compression sleeve, they will know what it is without having to ask.

Let’s stop the stigma and wear our sleeves with pride. We endure a lot and will continue to but we don’t have to be embarrassed. – Emily Piercell