Making Room for Lymphedema

A few days ago, a rather large box arrived at my home. With the same anticipation I feel on Christmas morning, I opened the box and unpacked its contents. It was my very own compression pump system! As I surveyed all the equipment, my first thought was “Cool - this will really help manage my lymphedema.” My second thought was “Wow- where am I going to store it?” There is no doubt about it, lymphedema weighs you down, as your weight on the bathroom scale goes up.

I am no different than most cancer survivors in that I have secondary effects from my treatment. These include peripheral neuropathy and osteoporosis, both of which require medication and various dietary supplements. But I also have secondary lymphedema, which is soft-tissue swelling due to damage to my lymphatic system.

Twice I have had surgeries to remove cancer, both of which included lymph node removal. I experienced minor swelling in my feet and ankles after my first surgery in 2010, but eventually the swelling went away. So, in 2013 when my right foot and calf began to swell six months after my second surgery, I expected it to eventually subside. But it did not; instead the swelling steadily grew to include my entire right leg and hip. I had lymphedema. My oncologist prescribed physical therapy, and subsequently my physical therapists taught me that there is no magic cure. Furthermore, if not properly cared for, the swelling will increase, and serious medical complications may arise, including cellulitis.

Well, I surfed the Internet and saw the sobering pictures of lymphedema in advanced stages, which was all the reality check I needed to prioritize the health of my leg. Under the guidance of my physical therapists, I learned the importance of daily skin care, massage and exercise, as well the need to wear a compression stocking every day. I also needed to “mummy” wrap my leg every night. Management of my lymphedema would be time-consuming, and I needed to accept that it was a life-long condition.

My adjustment efforts began in my closet. Many, if not most, of my clothes and shoes no longer fit, and I confess to shedding more than a few tears as I piled pants, shorts, skirts, dresses and shoes into bags for donation. The thought of buying replacements was of no consolation, because I already had experienced frustration in finding clothing and footwear to fit my asymmetrical body.

Fast forward four years, and I am glad to report that my leg is in a stable condition. However, despite my best efforts, I have had one bout of cellulitis. My closet contains fewer shoes, so there is ample room for my wide assortment of lymphedema accessories. Overall, I have accepted the daily care time and various physical limitations, and with my new compression pump, I feel well equipped to manage my lymphedema at home.

Should you experience unexplained swelling during or after your cancer treatment has ended, please see your doctor as soon as possible. Of course, you do not want to hear a diagnosis of lymphedema, but I found my treatment routine maximizes my ability to enjoy life as much as possible. I wish the same for you.