lymphedema life.

the dreaded lymphedema.

to be clear: i’m not a doctor, nor a specialist in the lymphatic system, nor an expert in the difference between primary and secondary lymphedema. however, i’ve spent 19 months worrying about lymphedema so that must give me some kind of street credibility.

this is the post i desperately wanted and needed after my surgeries. there is so much misinformation out there about lymphedema and a number of generalizations made by the medical community that perpetuate this fear.

there haven’t been many days since my left axilla lymph node excision surgery in the summer of 2018 where i haven’t worried about lymphedema. in some ways, getting the dreaded lymphedema became more anxiety producing than the cancer. that may sound insane; but it became something i fixated on – something i perceived i may have had some sort of control over. from a variety of medical practitioners, i was told that because i had no lymph nodes in my left armpit, my left arm could be triggered to permanently swell from any of the following:

• lifting a heavy suitcase
• the air pressure changes from flying
• falling asleep on my left arm
• repeated movements
• weight lifting
• sore muscles
• a strong massage, even on my back
• a cuticle infection from a manicure
• a needle
• a cut from shaving
• getting blood pressure taken
• excessive heat
• being obese
• or…. it could just spontaneously occur

they said i was at highest risk in the first two years post-surgery, but that it could happen at any point for the rest of my life.

i froze. a permanently swollen left arm from getting on an airplane? from visiting the esthetician? what could i even do that wouldn’t cause lymphedema?

i had one doctor telling me to wear a compression sleeve and another telling me not to. it seemed dreadfully unfair that collateral damage from a lifesaving surgery would potentially lead me to have to live with such a visible, unattractive and uncomfortable side effect for the rest of my life. it was also frustrating that the messaging around it was contradictory (even from doctors at the same hospital), forcing patients to make decisions for themselves.

in my post treatment phase, i knew that regaining confidence in my body was important. i also knew that being active was vital for my mental and physical wellbeing. but i was scared. yoga was weight bearing on my upper body. running included repeated swinging of my arms. weightlifting – which had been a really good fit for my body – was out of the question.

i started favoring my right arm. i lifted everything from my heavy cutting board to my heavy suitcase without help from the left side. i was in tune with every sensation in my left arm – if it felt itchy, or tingly, or heavy, or hot. i stopped going in hot tubs and saunas. i didn’t shave. i slept only on my right side. i did constant fist pumps to keep the lymph fluid flowing. i did everything i could to ensure i didn’t get lymphedema.

and then i did.

but it wasn’t how i expected.

it took me awhile to realize that i had lymphedema in my left breast. most women have one breast that is slightly larger than the other, and because it happened gradually, i didn’t notice. over time, my bras became tight, but i hadn’t gained any weight. then my skin on my left breast felt itchy and my pores became enlarged. one day, i stood naked in front of the mirror and finally realized how engorged it was. i was devastated when i realized it was true.

my oncologist in thailand was concerned about breast cancer (i wasn’t), but we had to check. so… i had a mammogram — which, of course, CAN TRIGGER LYMPHEDEMA!! oh, the irony.

a few weeks later, when i showed my breasts to my oncologist in canada, he seemed genuinely shocked, saying he had “never seen this in a melanoma patient before”. AWESOME. always love being the first. and… note to mr. oncologist: maybe keep those thoughts to yourself? it is not necessary to know that you’re ‘lucky’ enough to be so rare.

i had to research compression. i tried taping. i learned lymphatic drainage self massage. i discovered that sports bras give me more compression than actual compression bras (which are UGLY and EXPENSIVE, fyi). i sleep in sports bras every night, but give myself one night off a week as a rest. i can’t wear super skimpy tops easily but i never really did anyways. no loss there.

i was desperate to get back to exercise. i had been dipping my toes back into yoga, but when boob lymphedema happened, i went back to worrying again.

the turning point was a session with beth, my wonderful physiotherapist in ottawa, who is a certified lymphedema therapist. she told me that lymphedema was an inconvenience, but was not the end of the world. she was clear in her advice, so i didn’t have any guesswork. she also reminded me of the importance of bilateral training (meaning, using both arms)… starting with very low weight and slowly building back up. around the same time, i met with a lymphedema massage therapist, who compared my new exercise reality to cake. i can have a slice, but not ten. i need to do less than i think i can. exercise stimulates the lymphatic system, so it was important that i was moving. doing nothing out of fear was not an option.

i started very slowly.

i remember doing a plank for 1 second, and then the next day for 2 seconds, and then the next day for 5 seconds. i would set up my phone timer and only do a tiny bit more than the day before. i remember the day i finally did downward dog for the same amount of time as everyone else in the class. if i woke up in the morning even the slightest bit sore, i knew i had pushed it too far. it was constant calibration.

my ultimate desire was to return to my gym. in my previous life, lifting kettlebells and heavy weights had made me very happy. it felt good to be strong. it was motivating to grow and improve. and, i was good at it. i also missed the discipline and routine of going to the gym, as well as the social nature of being around other active young professionals. i was hesitant to rejoin group classes because i feared there would be too many movements that would be out of my reach.

i settled on working with a personal trainer, even though it was expensive and i knew they wouldn’t be an expert on lymphedema. my friend – who owns the gym here in bangkok – recommended i work with matt, a gentle and soft-spoken soul, who often works with clients who require rehab or a customized program. matt had never heard of lymphedema, but read everything that i sent him.

i began the week after i finished immunotherapy in october 2019. at that point, it had been 16 months since i’d really been in the gym. i was very tentative. i didn’t break much of a sweat, but i was moving, and that was worth every penny. i got breathless doing simple cardio. we debated what repetitive movement meant. i thought i’d never be able to do any sort of upper body press. but, i came back. week after week. three times a week. he tracked everything so we always stayed in the safe zone.

i’ve been back at the gym for four months. i take longer breaks between sets and we take it really slowly. i’m getting stronger, and more importantly, less tentative. my goals are different: in the summer i had to ask for help to put my carry on suitcase in the overhead bin…. last month, i did it by myself. i am squatting, deadlifting and i am even doing benchpresses again – at very different weights than pre-cancer – but still!

i will never lift what i lifted before, and i will never push my arms to the max (the grind, as they say in weightlifting). i’m a bit tired of explaining lymphedema, i hate having to wear a ridiculous amount of gear when i’m flying, and i still worry when my arm doesn’t feel quite right.

but, i don’t want to live the timid life. for me, living means moving, exercising, flying and even getting manicures!

those of you who have just had surgery as a part of cancer treatment, and are worried about lymphedema, know this:

your life will not be over if you get lymphedema.

eventually, there will be days when you don’t think about it very much at all.

you will use your arm again. you will surprise yourself.

*this photo was taken at my first kettlebell competition in october 2014. at the time, it was wildly out of my comfort zone, and i was competing against a personal trainer. but the feeling of pushing myself… it was thrilling. while my waterskiing, kettlebell tournament and rock climbing days are gone, looking back at that version of myself makes me proud.