Coping with lymphedema after sarcoma treatment

When I first went away to college after completing synovial sarcoma treatment, I thought I'd be leaving cancer behind me, except for the occasional checkup.

Unfortunately, I was quite mistaken. The end of my synovial sarcoma treatment brought lymphedema, a type of swelling usually occurs in the arm or leg as a result of lymph node damage caused by cancer treatment.

Noticing my lymphedema symptoms
One day, I was walking back to my dorm with a group of friends. I started lagging far behind and couldn't speed up. Something was wrong. I didn't know it then, but this was the first sign of lymphedema.

In the following weeks, I began experiencing pain in my right calf. I had trouble walking short distances. My entire leg felt so heavy, so exhausted. I had no idea what was going on, and I began to worry that my sarcoma was back. 

I called MD Anderson's Center for Reconstructive Surgery and asked about the pain in my calf. I was told to go get checked for a blood clot. The tests ruled that out, but there was some minor swelling in my right leg. I knew something was wrong. Soon after that, I was diagnosed with lymphedema.

How I managed my lymphedema
At the next checkup at MD Anderson, my doctor prescribed lymphedema physical therapy and told me to wear a compression garment on my leg. I had only seen older people wearing compression garments and never imagined this was something I'd do in my 20s.  

My physical therapist taught me how to massage my leg, wake up my lymphatic system and properly wrap my whole leg with compression garments.

I tried using a lymphedema compression pump to move the extra fluid out of my leg and reduce the swelling. But it made my symptoms worse. So, I just focused on wrapping and wearing compression garments.

I still had some lymphatic blockages in my legs, so I agreed to have surgery -- a lymphaticovenular bypass. This would redirect the extra fluid to allow for drainage. I knew there were no guarantees that it would stop my symptoms, but I was willing to try anything. I knew it could make my lymphedema worse. That was a risk I was willing to take.

After having the bypass in January 2015, I am happy to say I've recovered and have had very little to no pain since then.

Returning to college after the surgery was difficult. I had to prop my leg up in class. It also was hard because my friends had no idea what I was going through. Having your leg feel so heavy and fatigued makes it difficult to even walk to class. My friends tried to be supportive, but most people my age don't know what lymphedema is. It opened my eyes to how much more awareness we need.

Four weeks after surgery, I was able to start managing my lymphedema again. I was finally able to use the compression pump without any pain.  However, that doesn't mean the swelling and fatigue in my leg are gone. I still constantly have to deal with those.

Adjusting to life with lymphedema
During my last visit to MD Anderson, a physical therapist helped me get a better fitting compression stocking. Thankfully, I discovered that there are options. I didn't know I could get a custom made compression stocking, or about a nighttime garment, or a fitted wrap garment that I can use instead of wrapping. That'll save me a great deal of time.
 
I was looking forward to putting sarcoma behind me when I went to college. But when my lymphedema developed, I realized that simply wasn't going to happen for me.

Sometimes I get really upset about lymphedema, but I'm not going to let it stop me. Though I know my lymphedema will never go away, it can be managed. I just have to learn how to adjust to my new normal.
 
I will graduate this December with my bachelor's degree in human factors psychology. I cannot wait to walk across the stage to get my degree in spite of the lymphedema. My lymphedema is a reminder of everything I've been through, but it's also a reminder of how strong I am.