elephant arms.

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 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.

***

regardless of all these twisty spiralling emotions, i approached this the way i approach everything:  research.  collect data.  action.

FIRST

a few weeks after my surgery, i was referred to a physiotherapist that specializes in lymphedema.  she is awesome.  in fact, if we met under other circumstances i like to think we would be friends.  she taught me a bit about lymphedema and the risk factors, told me my life wouldn’t be over if i did end up getting it (maybe just a big uncomfortable and inconvenient).

she then gave me the following recommendations:

• avoid overexposure to heat (ha.  i live in bangkok.)
• not to do any heavy lifting (she said we can work back up slowly.  but still.)
• to avoid trauma to my left arm (i proceeded to immediately get a scratch of unknown origin on my left forearm!  panic ensued!)
• not to do anything that will cause inflammation or swelling (death to waterskiing and strong massages.)
• do not get lymphatic drainage massage  (ok, i won’t.)

NEXT (and this one may have been an error in judgement)

i consulted the internet.  only once!  (i swear!)  i read some horror stories, looked at some pictures that i cannot unsee, and read a story about a woman who did everything to avoid getting lymphedema and then got it 8 weeks post surgery.  of course, i then started to dread the anniversary of 8 weeks post surgery.  (it has since passed, lymphedema free!)

the internet also gave me the following recommendations:  

• avoid falling asleep in a chair (right.  are couches out too, now?)
• avoid getting cuticles cut (i’ve already broken this twice.  this girl needs regular manicures or i’ll bite all my nails off!)
• avoid cutting yourself while shaving (isn’t this just a normal life recommendation?)
• try to exercise in cool environments (impossible.  there is a veritable heat wave in ottawa at the moment.)
• get lymphatic drainage massage (ok, never mind, i will.)

FINALLY

i went to a chinese doctor.  i had heard that eastern medicine has more advanced knowledge of the lymphatic system.  he is the most fascinating guy.  born in vietnam, grew up in france, former civil engineer, current chinese medicine practitioner.  he says that lympadema happens to people with a low constitution.  what does that mean?  and is it me?  and how do i get a high constitution?  if you tell me, i’ll do it.

he then gave me the following recommendations:

• focus on “warming, warming”.  to wear long sleeves and keep my arm/shoulder warm.  to make sure i don’t shift from hot hot to cold cold quickly.  (ha.  again, i live in bangkok.  the AC is always blasting!)
• avoid eating cold food or drink, such as sushi or ice cold water (how did cold salad become the enemy too!?)
• instead of lymphatic drainage massage, use a hairdryer to massage my arm, to send the fluid up towards my heart (perfect.  a compromise.  AND cheapest lymphatic drainage massage ever!)
• do no repetitive exercise with my arm (for the rest of my life, he said.)
• avoid getting too many mosquito bites (agreed.  i don’t need to add zika or dengue to my life at this point.)

all these recommendations have been helpful.  albeit, some of them actually contradict each other.  should i be cooling my arm, or warming it?!!  does eastern medicine win or western medicine win?

the ultimate, most controversial issue in the world of lymphedema prevention is the conflicting research around FLYING.  and i fly a lot.  other than my commute to work and my motocy to get around downtown bangkok, it feels like my primary form of transportation (i have been known to exaggerate, but there you go!).  almost immediately, when you tell someone you are at risk of lymphedema, people say, “oh, so you’ll need to wear compression garments when you fly”.

however;

there is no actual evidence to show that wearing a compression garment on a plane prevents lymphedema.  the research shows that once you have lymphedema, a compression garment is necessary.  some people at high risk for lymphedema choose to wear them for the feeling of security, while others choose to travel with them in case the lymphedema comes on while they are away and then they have one for the return journey.   i decided to be fitted by a specialist, and i’ll make the decision about whether to wear it later.  let me tell you: if you want to feel like you just turned 93 years old, go and check out the catalogues of compression garments.  the female models look like they are from the 1980s, lifted from the front of those old fashioned sewing patterns.  the colors are a big deal.  beige looks geriatric.  black looks sporty.  you can even get purple, bright pink, or tattoo patterns.

you guessed it… i did (NOT) decide to get a tattoo sleeve.  now i’ve got the perfect accessory for my lbd (little black dress), a  lbcs (little black compression sleeve).  currently folded up in my closet.  hopefully it will stay there.  but i’ve got it just in case.

***

there are so many other things i should be more worried about than lymphedema:  getting stage 4, my upcoming twelve months of immunotherapy, the fact that i haven’t heard back from my insurance company yet.  but we do the best we can.

each time i start to perseverate or get in my head about my potential risk of getting an elephant arm, i try to visualize beautiful waves starting in my fingers, and moving up through my arm, under my skin, cleansing my lymphatic system and moving to the nodes throughout the rest of my body.  the water is crisp, a bit warm and not too cool, and the waves are cresting at the top.

*this photo was taken at the elephant nature park, outside of chiang mai, thailand, in december 2012.  did you know that elephants have skin that is an inch thick, that they can’t jump, and they are incredibly intelligent, grieving their dead?