A few months after I'd had surgery to remove both breasts, I began to notice some swelling in my upper arms. I didn't think much about it and went about my daily routine as I normally did, but over the next few weeks, the swelling increased and began to affect my movements. That's when I began to worry. Contacting my breast surgeon with the information led to an appointment for assessment. I wasn't expecting to be told I had lymphedema, a chronic condition often associated with the removal of lymph nodes after breast cancer surgery. I didn't know anything about lymphedema, but I was soon going to become a quick study.
The breast surgeon sent me to a therapist specializing in manual lymphatic drainage. During those therapy sessions, I received treatment to help reduce the amount of swelling in my arms. The therapist would massage each extremity and afterwards, wrap me in strips of lightweight padding and bandages. When I would leave the office, I'd feel like a freak. My arms were wrapped in mummy fashion, which made driving home difficult.
The treatments continued for many weeks and were performed three times a week. I noticed that after each treatment, the swelling was reduced and I felt better, although I did spend quite a good bit of time afterward in the restroom releasing all the built up fluid.
Nearing the end of scheduled treatments, the therapist taught me to perform manual lymphatic drainage. She showed me how to begin at my wrists while slowly and methodically moving up my arms with light pressure toward my arm pit area. Over and over again, I'd milk the fluid from my arms and afterward, I'd bandage them.
Wrongly, I assumed the lymphedema would resolve after the therapy sessions. I didn't understand this was a lifelong condition. I had no idea how it was going to impact my life. With lymphedema, I found it necessary to accept many physical limitations. I was unable to lift items over a certain weight, I had to be very careful of injuring my arms, and I needed to wear clothing that was not restrictive in any way.
Soon, I had graduated from massage therapy and had moved into the next stage of care. I was instructed to continue with manual lymphatic drainage but was also prescribed compression sleeves and an electric compression pump. These items would aid in daily relief from swelling, and while I was very grateful for insurance coverage
of the medical equipment, I secretly wished I hadn't developed lymphedema in the first place.
Lymphedema can cause a range of emotions. After the onset of the condition, its normal for those affected to feel anger, depression and embarrassment. Being unable to control a physical condition which imposes daily inconveniences is frustrating. Realizing the long-term effects of lymphedema can cause depression and being unable to hide the physical abnormality can bring about even more feelings of embarrassment and low self-esteem.
I'll have to admit, I've suffered a range of emotions related to lymphedema. When I first noticed the swelling and saw the doctor, I became angry. As she explained lymphedema was a fairly common side effect of having lymph nodes removed. I was upset that she'd failed to inform me of this prior to surgery but as she took time to help me understand the necessity of removing lymph nodes to check for metastasis, I felt a little better. And, since the lymph node removal had indeed revealed the spread of cancer in my body, I was thankful she'd been diligent in her quest to eradicate it from my body.
As I found myself having to perform manual lymphatic drainage daily, I began to become depressed. While I didn't want to have to travel to a medical clinic several times a week for treatment, I also didn't want to be bothered with performing the procedure on myself either.
It became embarrassing to wear compression sleeves. It was awkward trying to explain my "fat" arms to friends and family. In the winter, it wasn't as noticeable, especially if I wore a solid, dark color, everyone just thought I had on a long-sleeve shirt underneath my clothing. In summer, there was no way to hide the sleeves. Often, I would choose not to wear the sleeves instead of suffering embarrassment and humiliation, but I always paid the price later as the swelling would become out of control.
But one day, I realized I'd been loathing the lymphie life. (For those who don't know, a lymphie is a nickname for a person who suffers from lymphedema.) It became clear I'd been grieving over my past life, the one I had before being diagnosed with breast cancer. Apparently, there are five stages to grief: denial, anger, bargaining, depression and acceptance. I'd already experienced most of them, but how could I move past this grieving and loathing of my life with lymphedema?
One of the first things I did was try to connect with other lymphies. Through online social media groups, I was able to find other breast cancer survivors who were also experiencing the trauma of life with lymphedema. We were able to offer each other encouragement and support by sharing our stories with one another. Realizing there were others like me helped me feel less alone.
I also found websites that offered cute patterned compression sleeves. Since I needed to wear sleeves to combat the swelling, they might as well be decorative.
As I continued to look for more women suffering from lymphedema, I came across a website for the Lymphedema Treatment Act. The national spokesperson was famous actress and fellow breast cancer survivor, Kathy Bates. Soon, I realized there was an entire army of women struggling with the problems associated with lymphedema.
Learning to live life as a lymphie has been challenging but I must say, I no longer loathe my life. Lymphedema wasn't something I asked for nor did I expect it but, I'm stuck with it so I'd better learn to make the best of it.
The Persian poet, Rumi, once said, "The wound is the place where the light enters you." There's a lot of wisdom in that sentiment. My wound, breast cancer, took so much away from me and lymphedema added fuel to the fire but without those wounds, I would never have discovered the light - my strength and my power. Also, since I've learned to accept my fate, I've been able to move past those old feelings of anger, depression, and embarrassment. If you suffer from lymphedema, don't loathe your life. After all, you're still living and that's what matters most.