“Chinese people have a saying: when people get cancer, they die. But it’s not the cancer that kills them, it’s the fear.”
once your life has been touched by cancer, it can feel like cancer is everywhere. there are so many triggers – movies about cancer, people dying of cancer, social media posts, and dreams about cancer. in some bizarre and seemingly unexplainable way i am also very drawn to these stories. i find myself clicking on instagram posts that people in the cancer community have posted, wanting to learn about people who have died. i choose to read memoirs about people who have been diagnosed with cancer and other horrible diseases. this week i actually made a conscious decision to watch a movie that i knew was about cancer. wouldn’t most rational people who have had cancer avoid these storylines?! reading people’s stories makes me feel connected; yet it gives me new potential scenarios to worry about. it is hard to hate from close up, people say. could that argument apply? if i look at cancer under a microscope, knowing my enemy and the pain it causes, does that make me more resourceful, informed, prepared? might it decrease my fear?
a few weeks ago i noticed some small white dots on my upper arms. they looked like freckles, but white. i went to the dermatologist and he said it was likely the beginning of vitiligo. vitiligo is the loss of pigmentation on the skin, and is often a side effect of immunotherapy. typically they are bigger patches. when i started learning about vitiligo and immunotherapy, i found some studies that said people who developed vitiligo while on treatment were less likely to have a recurrence! i felt amazing! strong and powerful! BRING ON THE VITILIGO!
and then, last week, someone important to me passed away. a few days before she died, i went to go visit her in the hospital. i have never seen a human being in that condition. her eyes and her smile were the same, but she was skin and bones otherwise. at the time, it didn’t feel hard. it felt surreal. i didn’t even cry. but gradually, after she died, i started dreaming about it and staring at her picture – it hit so close to home. we were diagnosed around the same time. i have to admit to myself that this has been very sad and scary. i still don’t quite know how to process it. i know that every cancer story is different, and that so much of it is brutally out of our control.
the post treatment phase, is full of emotional highs and lows. in many ways, it has become more mental than physical.
for several days, as well as at her funeral, many people were wearing black. i struggle with black and its association with mourning. when i die – and i’m saying it loud and clear – no one will be allowed to wear black. i believe death should be a celebration of life, and black feels sad. even more confronting: the root of the word melanoma is from the greek melano, meaning black and oma, meaning tumor. literally, the name of the type of cancer that invaded me is “black tumor”. and what’s worse, the color for melanoma awareness is – guess what – BLACK. WHAT?! why would the melanoma community choose black as their color? breast cancer gets pink, prostate cancer gets light blue, lung cancer gets white and melanoma gets BLACK? i tried to embrace it when i was first diagnosed by painting my fingernails black but i just couldn’t sustain it. i felt like one of those ‘goth’ kids from the 90s who were into marilyn manson. so not me.
so, what is the opposite of black? black is technically all the colors absorbed into darkness. white – the absence of color – must be the opposite. so: my white dusting of vitiligo? or, her beautiful smile? my gold fingernails?
yesterday, i finished that movie i referred to, called the farewell. the movie is about a family in china, and a grandma they refer to as nai nai. nai nai gets diagnosed with terminal lung cancer, and given only a few months to live. the entire family decides to deceive nai nai, and keep her diagnosis a secret from her. this decision tears up main character billi, played by aquafina. the movie is brilliantly written and acted, and i kept waiting for the moment of devastation, when nai nai dies. during the end credits, we find out that six years after her diagnosis…
spoiler alert:
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she lives.
*at school, we have a community blackboard. each week we pose a question for students to answer. the question was: what question do you have that could go on this blackboard? my favorite suggestion: is magic real? and my favorite answer: YES. photo was taken on my iPhone at some point during the 2018-19 school year.
