It’s the side effect that’s barely mentioned. A whisper in passing by the surgeon and radiation oncologist. Spoken nonchalantly as if not talking about it means it won’t happen. But many of us know that this is not the case.
Today it was announced that the U.S. Senate unanimously voted that March 6th will be World Lymphedema Day. This landmark decision is the first step in bringing awareness to this awful condition. I wanted to use this opportunity to not only tell you all about lymphedema but how it has impacted my life.
Lymphedema can happen to anyone who has lymph nodes removed during their mastectomy, a sentinel lymph node biopsy or radiation to the area. I’m not even talking about those who are born with or develop the condition as part of a hereditary trait or those who get it as a result of another bodily trauma.
Lymphedema is the swelling of an extremity that occurs when lymph fluid is trapped and can not flow properly. I got lymphedema in my right arm and hand about six months after my mastectomy with axillary lymph node dissection.
I asked my surgeon about lymphedema, concerned about the risks. “Do you see anyone in the waiting room with a sleeve? It’s extremely uncommon.” She then handed me a pamphlet about lymphedema prevention and sent me on my merry way.
Let me say, I love my breast surgeon. What she does, she does brilliantly. She’s warm and caring and when it came to my cancer and mastectomy, she was knowledgeable and giving. Her job was to get the cancer out of my body and she did that. What she had to do to my body is not pretty, but that doesn’t matter. Her job was to save my life and she did that. But that’s not where the story ends for many of us, is it?
Getting lymphedema has been traumatizing in many ways, more so than the cancer itself. Cancer was something to be beaten or overcome. With my cancer I could have a mastectomy, chemotherapy, radiation, herceptin and tamoxifen to help make sure it never comes back again (although even all of this is not a guarantee). Lymphedema is for life. It’s something I am going to have to manage. At this time, there is no cure.
I’ll repeat that in all caps.
THERE IS NO CURE!!!!!!!
Knowing I had done everything I needed to do to save my life and many of these life saving measures have caused me to have a painful condition that I will have to live with for the rest of my life has been unbearable. When it was first happening, I fell into a depression and cried all the time.
I couldn’t imagine how I was going to live my life with a limb that unpredictably swelled when I lifted my child, ate a salty meal or the weather went above 80 degrees. I was afraid all of the time; afraid when I tried to imagine what my future might look like. It was hard to imagine my future at all.
I felt ugly. Like a teenager who’s uncomfortable in her developing body I began to hide my hand. I’d fidget with my clothes so that they’d hide my swollen hand or how one sleeve was tighter on my arm than the other. And feeling even more ugly than I already did after my mastectomy was a major blow to my self worth. Sometimes, I wondered if life with lymphedema was worth living. I never contemplated suicide or anything like that and I didn’t want to die. But I wasn’t sure I wanted to live, either.
I kept a lot of these feelings to myself. My husband, who knows how hard this has been on me doesn’t even know I was having these thoughts. He’s going to flip the fuck out when he read this. (Don’t flip out, honey. I’m ok, I promise.)
But that’s the problem with lymphedema. Many people don’t know about it, not even doctors. They don’t know how to talk to us about it and they don’t know how to help us prevent it from happening, although, sometimes it is unpreventable. They also don’t know how to support us when and if it happens. Like many medical conditions, we don’t need to simply treat the ailment but all of the mental and emotional baggage that comes with it.
That is where Cynthia Shechter comes in. Cynthia is an amazing physical therapist who specializes in breast cancer care and lymphedema and she runs and owns Shechter Care here in NYC. Before I met Cynthia, I was told that I would need to wear a compression sleeve every day for the rest of my life and go to sleep each night with my arm bandaged. I told my previous PT that I couldn’t live like that. Cynthia agreed. Her goal is to find ways to manage my lymphedema and still be able to live my life comfortably.
Since meeting and working with Cynthia and her team, my lymphedema has improved. Any time there is a flare-up, she doesn’t freak out. She just says, “Oh, don’t worry about it. We’ll get it back down.” She means it and she does. This has changed my whole perspective and outlook on life. You see, now I don’t cry myself to sleep every night. I don’t wonder if life is worth living. I know it is and I can find a way to live happily with this condition. Life will be hard and it won’t be perfect but there will be more joy and happiness than I thought I can have. This is a huge gift.
Coming soon, I will have an interview with the amazing Cynthia Shechter about lymphedema. I’m hoping that by bringing her expertise to my blog, many of your questions will be answered about lymphedema and care for women who have undergone breast cancer treatment. With awareness and education, it is my hope that no one will have to feel hopeless like I did and will be able to advocate for their own care. I can’t wait to introduce her to you all.
Did you develop lymphedema after breast cancer surgery and treatment?
How has your life changed as a result of lymphedema?
What is one thing you would like people to know about your lymphedema experience?