Sarah DeBord was diagnosed with metastatic colon cancer at age 34. In the years since, she has turned her diagnosis into a calling, and become an advocate for other young adults diagnosed with colorectal cancer and parents with young families facing cancer. She works as a communications and program manager for the Minneapolis-based Colon Cancer Coalition , volunteers her time with the online patient-led support community COLONTOWN , and blogs about her often adventurous experiences of living with chronic cancer at ColonCancerChick.com.
I vaguely knew what lymphedema was, and assumed it was something that only happened to breast cancer patients. But you know what they say about making assumptions.
As she looked at my bare leg, the physical therapist immediately confirmed that I had lymphedema. She matter-of-factly told me it was a result of the surgery I'd had to remove the cancer and cancerous lymph nodes from the left side of my abdomen, thus is being in my left leg. I oddly felt relief as it only took two weeks to find out why my leg had suddenly swelled up one day while I was sitting in my office. When it's taken months and years to get to the bottom of some of my ailments, two weeks is a pretty remarkable record.
Though the swelling of my entire leg was sudden, the warning signs started to appear months earlier when my ankle swelled during a flight. At first, I just thought it random since it cleared up on its own once I landed. But when the swelling didn't go away after another flight a few weeks later, I just accepted that it was a result of all the medication and chemotherapy. My body was bound to show its displeasure at some point, and I just assumed a mildly swollen ankle was it. My life was too busy and the swelling too mild for me to give it much thought.
Little did I know at the time that I was one of countless cancer survivors at risk for lymphedema. Had a provider told me of the risk, I could have possibly sought treatment sooner and potentially lessened the severity of a condition that I would now have for the rest of my life. But why didn't anyone warn me? Why didn't the surgeon who removed my lymph nodes let me know that there was a lifetime risk of this? Why didn't the oncologist who looked and squeezed my ankles at every exam tell me why he was squeezing? Why isn't it standard practice to let a patient know what can potentially happen as a result of missing or damaged lymph nodes? Because they themselves don't know much about this condition as my new certified lymphedema therapist would tell me. Medical school teaches a lot, but instruction on the lymphatic system is limited to just hours.
After the reality of my diagnosis set in, I'm not sure what disappointed me more — that I wasn't told this could happen to me, or that my own oncologist was so ignorant to a condition that could affect many of his patients that it took two straight weeks of almost daily visits before he finally referred me to my therapist.
Despite waking up every day with cancer, it and the subsequent side effects have not impacted my daily life like lymphedema. It's a condition that adds additional time and effort to my daily routine, has an increased financial impact with expenses not covered by insurance and copays, puts me at greater risk for a serious skin infection that has landed me in the hospital, often cramps my lifestyle, and most frequently takes a toll on my self-image. But being the optimistic person that I am, I'm grateful that leg isn't really noticeable unless you're really looking close, or I'm flashing my compression garments. I don't deal with the chronic pain that many of my peers face, and because I was diagnosed so quickly, by leg has remained manageable without the buildup of hard, fibrotic tissue.
That doesn't mean I don't face daily disappointment as I stare down at my mismatched legs, or still wonder why providers have left it up to my fellow "lymphies" and certified lymphedema therapists to advocate and educate other patients about the risk associated with lymph node removal or damage due to cancer treatments. I'm continually surprised at the physicians I encounter who I have to educate about my leg and the garment or wraps I wear, and I'm continually pleased when I can let one more cancer patient know about their potential for developing lymphedema, what to look for, and how to advocate for themselves should the day come when they experience swelling that their providers just can't explain.
Just as with colorectal cancer, connecting with my fellow "lymphies" has enhanced my daily struggle with a chronic disease, and reminded me that patient empowerment will always shine a light into an often-ignored space. I'm grateful for those out there that are willing to speak up, show off, and not hide their parts that don't quite match the other.