The isolation of illness
I can’t tell if people have forgotten me or if I’ve pushed them away
Content warning: Suicide and nudity
When I first found out I have cancer, there was a lot of optimism.
“Well, maybe they can just scoop the cancer out, and you won’t even have to do chemo!” my friends said.
My friend E had been with me through the daylong ordeal: She had met me in the morning to accompany me to my mammogram and my ultrasound. She was in the room with me when they performed the fine needle aspiration. She was with me when I found out I have cancer, both of us uttering, “What the fuck, what the actual fuck” over and over again.
But we went and got a beer and split a bowl of ice cream when it was all over, and we joked about medical marijuana (not that I ever needed an excuse to medicate), about cute dogs, about inane life shit, and with optimism, we discussed lesser treatments because so much was unknown and all options seemed possible.
I posted a single line update to Twitter and Facebook — “I have cancer.” — and the text messages and comments and replies were beginning to trickle in. J texted me that she was in my neighborhood with L getting pizza. We had all once worked together at Dogster and Catster, and L had just lost her job the way I lost mine to the acquisition a year before.
But everything was all still all right then. Yes, maybe they could just scoop the cancer out and I could get new tits and I wouldn’t even have to worry about keeping my hair.
It would be fifteen long days until I met with my oncologist to find out my true fate, and in that time I rallied everyone around me for Valentine’s Day. My parents and friend-sister EC flew up from Los Angeles to be with me. I wore a flower crown and white dress and glittery false eyelashes, and ordered a case of champagne. I didn’t know what was going to happen to me, but I wanted to give myself the pleasure of hosting company in my most resplendently femme form. We circled the wagons in my tiny apartment living room, and I was dizzy with the love. My mother teared up as she thanked everyone for being there, relieved that I am surrounded by so many good people. In those fifteen days, there was hope and warmth despite the growing dread of unknown as I yielded to further imaging and testing with increasing anxiety.
I finally broke down at the office when they called to schedule my port placement for chemotherapy. At that point, all I knew was that I was still in tremendous pain from the biopsies with no results to show for the agony I had endured. People kept asking me what stage I had and I had to say I did not know. No one had discussed a treatment plan with me and yet they were calling me to schedule outpatient surgery.
Chemo! I remember thinking. No one has said anything to me about chemo — I don’t even know what stage this is yet!
Reality is sometimes a slow crawl and abrupt descent.
I called every number and wrote every email address I had, furious and scared, articulating my mistrust in their care. Port placement! For chemo! Who said anything about chemo? We’re just scooping the cancer out, right? I’m not losing my hair. I’m not losing my hair!
And honestly — how dare they. How dare no one help me navigate this new world of cancer. How dare they push me out of the airplane with barely a parachute, so I would crash land on this alien world with no map, no bearings, no understanding even of the language. I didn’t even know what or who an oncologist is.
A port? I Google image searched it. I was aghast. A protruding bulb in my chest? A semipermanent and hideous reminder of my illness? Over my dead body. They would have to kill me first.
And that’s exactly what they had in mind.
Finally — after a cascade of angry correspondences — my oncologist called me. It was after 5pm on a week day. It was the first of many of her compassionate gestures above and beyond what is required of her … but we’re not at that part of the story yet.
“Listen,” she said, “I know this system is difficult to navigate. I want to apologize.”
“I don’t want to do chemo,” I whimpered. “I don’t want to lose my hair.”
“What’s your hair like? What color is it?”
“It’s thick and it’s curly and it’s dark with blue and green.”
“We can talk about keeping your hair at our appointment. There is so much to talk about. It’s going to be okay though. And I’m sorry it’s taken so long to meet with you.”
I went into that appointment with femme guns blazing. Nude heels, tight skirt, my gold cardigan knotted at my waist to offer a glimpse of my abs. My hair clean and freshly dyed dark blue. A dusting of blush, subtle false eyelashes. My armor, my weapons, my security blanket.
Nothing could have prepared me though for the true and sinister shape of my enemy, and the gaping dark unknowns it would bring.
Already is my case exceptional because of my age. Already is my case exceptional because of my good health. But the exception I was not prepared for is the rarity of my particular type of cancer. Its aggressive tendency to grow and grow and grow and metastasize in the bones. The data so limited that it can only be anecdotal. The 50/50 chance of recurrence. The lack of a standard treatment plan. The lower survival rate.
Metaplastic breast cancer.
Less than 1% of all breast cancers.
“The champagne of cancers!” I would joke darkly to a friend.
And so I managed to dance at the very edge of my grave. I’m not dead yet, but when one hears such news, she begins digging — just in case. I was joking darkly, but I was laughing nonetheless.
But maybe I just wasn’t being careful or maybe I just tripped. Maybe someone pushed me. It doesn’t really matter how it happened. I fell into the darkness and I could see no way out.
I am facing the black grave-shapes of the unknown, and I am full of anger, fear, and resentment.
The text messages and voicemails that once felt so uplifting now go unanswered, bloated — I am sure — with platitudes.
I have been vocal and public about my cancer, my trauma, and my grief, and it stirs up alarm among my friends that — frankly — seems selfish. I feel I have little that I know or can trust or can control right now, and shouldn’t the contemplation of my own death by my own hand be my right? When faced with such dark bullshit — such utterly inane unfair bullshit — shouldn’t I get to decide what will kill me and how? Is my body not already attempting its own suicide?
The pleading of my friends otherwise strikes me as profoundly ignorant. They aren’t sitting where I am sitting, staring into the same void I am staring into, and struggling to get out of bed loaded with the same death-chemicals I am heavy with. If living is what really matters, why don’t they go ahead and shave their goddamn heads? They aren’t living in bodies that are slowly dying around them, they aren’t being pushed to the limits of life just for a 50% chance to desperately squeeze a mere three years longer on this earth, they aren’t already bone-tired from a lifetime of surviving only to be asked to survive a little more. Their doctors haven’t prescribed them a regimen of cell death. I’m supposed to just be okay with all this?
At some point, nothing helps, and I just want to be alone. The flurry of my friends fussing over me is as overwhelming as the illness itself, and my emotional resources are limited and my patience is short, which are both just as much side effects of the chemo as they are my own personal problems. In their frantic text messages and voicemails, I hear their fear of their mortality, and the discomfort my illness has placed within them when they see me — young, healthy, getting her life together — suddenly taken by a lurking foe.
I resent my friends for being healthy, for carrying on with their lives. I resent their romances, their daytime drinking, their nights when they don’t sleep enough because they aren’t worried about what may or may not lower their white blood cell count.
I resent them for not texting me even though I was the one who told them to leave me alone.
I feel most myself at the office, where I am only expected to perform the idea of Liz. My coworkers know I have cancer, but they don’t really know I also have trauma and debilitating mental health issues. It feels good when they’re excited to see me even though it’s not really me they see, but the safe-for-work version of me. This Liz is not the Liz of long and intimate friendships. It is the very superficial version of Liz, and, honestly, she is a relief to portray. She almost doesn’t have cancer. She goes in and she writes code. She is resilient and tenacious, and can you believe she is working through this? What an inspiration!
They haven’t seen the darkness in me, the grave-shape of my shadow. They haven’t witnessed me the way E did, when I was on my knees on the floor of my bedroom and screaming. They aren’t close enough for me to push them away. When I am at the office, I am insulated from reality by professionalism.
But when I come home, I still have cancer. When I am alone, that is when the cancer is most poisonous, when it treads the thin-ice of my sanity. When I am alone, that is when the cancer gets to me the most.
And I am alone because I have cancer.
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.