A ten point update
What happens when everything goes to hell part four
One:
Two: On the slightly-less-dark side, I am now on an oral chemo called capecitabine. I take three pills twice a day for fourteen days, then I skip a week, and then I do it all over again — for eight long cycles. That’s four and a half months for those of you following along at home. It’s not the kind of prescription one picks up at their local Walgreen’s. It’s mailed to me and comes packaged in this scary bag.
It is literally death in pill form. So if things in the United State go from bad to worse, I can just take the whole bottle.
I am only kidding — well, I am only kidding as much as someone whose totally unfair, unjustified, and inexplicable illness can be considered a pre-existing condition which could result in a denial of insurance coverage if you-know-who follows through with you-know-what. Each chemotherapy infusion costs a whopping seventy thousand dollars without insurance. That’s the upper middle class annual salary for folks who live anywhere that is not San Francisco.
In other words: Death by cancer or death by cancer treatment?
Three: If my cancer recurs — which is not unlikely — it will probably be untreatable. Not that I would seek treatment. I’ve already made that decision. Because if my cancer recurs, it will be in the next three to five years, and by the time I am done with my current treatment, this illness will have consumed two years of my life. I am not doing this again. Which means I might not live to see a woman president, which means I might die unsure of the safety of my friends. “Bleak” is hardly the word I would use to describe this potential future. 2016 has been the most awful year of my life.
Four: Love is the person you hold close when you feel like the world is burning down around you, and I found that love in the midst of this illness. I have many, many complicated feelings about this.
Five: It is only Day Ten of my first twenty-one day chemotherapy cycle and I already passionately hate this shit. Maybe I wouldn’t hate it so much if the national context were better, but as it is, it’s difficult to feel optimistic about anything when at my despairing mention of the election, my car mechanic gestures to indicate the both of us and says, “And we might be in the most trouble.”
Six: I lost my train of thought. Choo-choo. All aboard!
Seven: I think this chemo is making me dumb. My partner said, “Meet me at Ryan’s house” and for twenty panicked minutes, I couldn’t remember who the hell Ryan is even though he’s my partner’s boss and his house is literally across the driveway from my partner’s home. “Chemo brain” is an actual, reported side effect of chemotherapy, although there is no definitive research on resulting permanent brain damage.
Eight: If there’s any good news, it’s that my last day of this chemo is April 20th and marijuana is legal in California. Not that the legal status of weed ever stopped me from smoking it. I always figured herb would be legal in California one day, I just never thought I’d get to tell the “doctor” signing off on my MJ recommendation, “I need this for cancer.”
Nine: Some pharmaceutical CEO is making a buck off my illness. He probably voted for he whose name shall not be spoken. If you’re a white person, donate money to my medical fund. It’s the least you can do. It’s more effective than a safety pin or pink ribbon, that’s for sure.
Ten: I am already so, so tired. Exhausted from nearly a year of this cancer bullshit. Breathless from holding my breath, drowning in a body that is literally dying. My whole life on pause and uncertain if I will ever get to resume it. Mourning the woman I was before cancer, mourning the loss of my innocence, my breasts, my health, my sense of youthful invincible immortality.
People are out there fighting the injustices this election represents, and I am too tired and too vulnerable to participate. I was already mentally and spiritually low, but I did not know the bottom could be even further. I thought everyone was just being alarmist, melodramatic — maybe even downright out of touch and hysterical — and then, as I was spelling out my last name for someone, I realized how an entire successful presidential campaign was centered in part on normalizing an outright hatred of … of me.
I don’t speak Spanish. My immigrant parents sacrificed our history for assimilation. After facing discrimination upon their arrival in this country, they wanted their children to speak perfect American English. My father — whose accent was the subject of derision — got his undergrad degree in English, and my mother’s accent only comes out when she admonishingly addresses me by my full name. (“Eleeezabeth Rachel!”)
The woman who serves pupusas at the Alemany Farmer’s Market where I go to visit my partner at his produce stand, recognizing me as distinctly different from the mostly white-if-not-Asian patrons of the market, once addressed me in Spanish. And like usual, I blinked, and then shook my head in embarrassed and shameful apology. She then switched to English, and I tipped her extra.
I say I am from Los Angeles, but really I am from a suburban city just a few miles north of the LA county line. Our morning drive to the private elementary school I attended took us past sprawling fields, and I would see the farm hands bent over the crops, and I knew I was somehow like them even as I knew I was not. I grew up sheltered in private schools, receiving the best education money (or, as the case often was, credit) could buy because as my parents rationalized, “They can take all your possessions away, but they cannot take what’s in your head.” Private schooling had its own burdens — mostly the burden of being the token Latinx kid and the accompanying intense awareness that my hair was darker and frizzier, my hips wider, my skin darker, my familial history shallower. That the fruits of my hard work would always never be truly mine as they were always overshadowed by suspicions of “diversity quotas.”
I am a Latinx woman in tech. One of the rarest of unicorns. I make good money but not as much money as my coworkers, and I insist on dragging myself to the office even as my red blood cell count drops dangerously close to anemic. Yes, I stole a white person’s job. I was laid off from my previous job because someone else was willing to do more work for less pay. So I did what my immigrant parents taught me to do: I taught myself a new skill and pursued a better life with dogged determination. Isn’t that the American Dream?
As a child, as we dove past the rows and rows of crops and the rows and rows of brown people hunched over them, I remember sitting with an ambiguous discomfort. Now I know that my discomfort is the awareness that I am perhaps just one lighter skin tone lucky. And yet, it is with pride that I boast my skin does not burn in the sun, that I can dance and fill out dresses with supple curves, even as it comes at the expense of knowing nothing of where or who I come from, so that my existence starts with a black hole, making my whole universe unstable. I pronounce my own last name the wrong way. My “ethnic ambiguity” has often been my cloaked disguise, but invisibility is painful, especially when people assume they can insist on asking me, “No but where are you from?” when I tell them I am from right here, from California, born and raised, my birth certificate says so.
But the folks who look at me and then say something in Spanish see me exactly for who and what I am. Even when I can’t answer back in the same language, they understand what my parents did, and they can’t blame them for it.
As I spell my name to the pharmacist over the phone — “Acosta … Ayyy, seeee, oh, esss, tee, ayyy” — I realize that for all my privilege and all my hard work, and for as much as I have shamefully assimilated, I am still the one with the exotic last name.
Hatred is the dull, blunt, and unsophisticated weapon of the ignorant. It doesn’t know the nuance that I know — the liminal, nuanced experience of an identity fraught with confusion and pride, and internalized and externalized conflict. Hatred is blind and ruthless and vicious. Though it is an obtuse weapon it is still a lethal one, and I am scared.
I am a thirty-one year old queer Hispanic woman and trauma survivor battling a rare and aggressive form of breast cancer. Devoted to social justice and advocating for mental health understanding and resources, I was just six months into my new career as a backend software engineer trying to make space for marginalized people in tech when I was struck with Stage IIa Grade 3 triple negative metaplastic breast cancer. You can read more about my journey in my publication Never Tell Me the Odds.
If you enjoy my writing and you are able to, please consider donating to my medical expense crowdfunder. I’ve got a yearlong treatment plan ahead of me, and I need all the help I can get. Thank you so much for your generosity.
