each morning, the first thing i do is look at my left arm. i poke at it. i feel its weight. i press to indent the skin, willing it to bounce back as it did the day before. i gently pull at it to see if it is still supple. i investigate each wrinkle and crease, each mole, the texture of my skin. i compare it to the look and feel of my other arm. i become attune to any new or unusual sensations… does it feel tingly, achy, or uncomfortable?
i’ve got arm tunnel vision.
what has caused me to descend into this arm-fixated fury?
well? its lymphedema. or elephant arms, as i prefer to call it. the best definition i’ve found is the following:
Lymphedema is the build-up of fluid in the body’s tissues due to damage in the lymphatic system. It occurs when the lymph system cannot remove the fluid it normally does from the tissue. This build up causes abnormal swelling, often of an arm or leg. Lymphedema can be primary or secondary.
lymphedema is not simply swelling, and it is definitely not water retention. it is different from your feet ballooning up because you’ve been on an airplane for too long. elephantitis, we call it amongst our friend group. (disclaimer: not a scientifically accurate name!)
it is different because no cure exists for lymphedema. it can be managed. but that’s it. how can we have cures for cancer, but no cure for lymphedema?!
i am at a greater risk for lymphedema because i had all the lymph nodes removed from my left armpit area. lymph nodes are organs in the lymphatic system that help clear/clean infections. we have hundreds of them (in our neck, armpits, groin & abdomen). without my lymph nodes, the main highway in that part of my body is closed. the movement of lymph fluid from my arm has likely slowed, and it needs to to find alternative routes to get to the rest of my body. if it builds up too much, BAM! i’ll get lymphedema. (i have this image that it would just blow up in an instant like a balloon; in reality, it is probably much less dramatic.)
primary lymphedema means you are born with it; secondary lymphedema is a complication related to cancer treatments (surgery, radiation etc.).
the tricky part is that the medical community doesn’t actually know that much about lymphedema. i was told that the doctors at the hospital have conflicting beliefs… that it has even led to controversy! again, how dramatic?!! i read somewhere that doctors get no more than an hour on the lymphatic system in medical school. (doctor friends, is this true?). research is limited, and has so far only proven two evidence-based connections: if you are obese, or get an infection in that area, your risk of lymphedema goes up. according to my surgical oncologist, i have about a 1 in 5 chance of getting it.
i’ve been trying to figure out why i’m so hyper-fixated/anxious about getting lymphedema. i already have cancer, and getting lymphedema feels like it would add insult to injury. it terrifies me. perhaps it is the aesthetics of it, or the permanence of it. i’m not sure. it isn’t life threatening like cancer is; but it would be a constant inescapable visual reminder of what i’ve been through – to me and to everyone else. i would have to wear compression sleeves all the time. i’ve always loved my strong arms. i would look bloated and sick. it would ruin my outfits, and my awesome dresses. make me feel less attractive.