This piece was originally written in February of 2016 when I was diagnosed with cancer.
I am seven years in remission, which for my particular cancer, pretty much means my chances for recurrence are almost negligible. The risk is always present and the scars of my surgeries are permanent. When I look at photos of myself from before cancer, the person staring back at me feels like a stranger.
I look forward to the days when cancer care has advanced so much that the treatment I underwent is seen as blunt and unsophisticated as the radical mastectomy of the seventies. I hope a cure is out there.
Until then, cancer remains a dark illness — a shadow path of unknowns and harrowing treatment side effects like hair loss and nausea and the anxious threat of recurrence no matter what you sacrifice.
To my fellow cancer patients — this one’s for you.
When I first found out I had 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.
A friend had met me at the hospital early in the morning to suppport me through what ended up being a day long ordeal. She was with me when the mammogram that was supposed to be “probably nothing” turned into an ultrasound because the doctors couldn’t make a confident diagnosis from the resulting images. My friend was in the room with me when they performed the fine needle aspiration biopsy because the ultrasound didn’t reveal anything conclusive. She was with me when I found out I have cancer, both of us uttering profanities in shock.
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, about cute dogs, about inane life trivialities, and with optimism, we discussed lesser treatments because so much was unknown and all options seemed possible.
I had posted a single-line update to my social media — “I have cancer.” — and the text messages and comments and replies were beginning to trickle in as we finished up our beers. A former manager texted me that she was in my neighborhood with a mutual friend getting pizza. We had all once worked together at Dogster and Catster, and our friend had just lost her job the way I lost mine to the acquisition a year before. They told me to come join them for pizza and I did and we talked and laughed and said things like, “Cancer? For real?”
But everything was 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 or losing my hair. It didn’t seem real even though my breast ached from the biopsy which took three attempts to get right.
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 a friend from college flew up from Los Angeles to be with me. I wore a flower crown and a 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 resplendent 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 to find me surrounded by so many good people. In those fifteen days, there was hope and warmth despite the growing dread of the unknown as I yielded to further imaging and testing with increasing anxiety.
I finally broke down at the office when the hospital called to schedule my port placement for chemotherapy. At that point, all I knew was that I was still in 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. I was in the dark. I was no longer in control.
Reality is sometimes a slow crawl and abrupt descent. I wasn’t laughing anymore. Whatever facade of courage I had presented at first was gone and I was left with only fear.
I called every number and wrote every email address I had, furious and scared, trying to get a hold of someone to answer my questions, to reassure me they would just “scoop the cancer out.” I was met with hold music and answering machines and silence and excuses.
I was thirty-one years old. Why would I know anything about cancer? It was like being pushed out of an airplane with barely a parachute to crash land on an alien world with no map, no bearings, and no understanding even of the language. I had no idea what a port catheter was. All I knew was that cancer means chemotherapy and chemotherapy means losing your hair and throwing up all the time.
For fifteen days, the optimism and bravado mutated into fear and panic.
The oncologist assigned to my case finally called me after 5pm on a week day.
“Listen,” she said, “I know this system is difficult to navigate. I want to apologize.”
“I don’t want to do chemo,” I pleaded. “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.”
When I did finally meet with the oncologist, nothing could have prepared me for the true and sinister shape of my illness, and the dark unknowns it would bring.
My case was already exceptional because of my age and because of my health and because of the lack of family history of cancer. The exception I was not prepared for was 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 joked darkly to a friend.
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 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 feels selfish. I feel I have little that I know or can trust or can control right now, and shouldn’t I be allowed to go to dark places without judgment? Everyone tries to shoo away the shadows as if we can cure the cancer by just not talking about it. Maybe if we ignore it, it will go away — right?
I keep having to make excuses for the people telling me to “just look on the bright side.” 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 own heads? They aren’t living in bodies that have suddenly decided to die a little faster, 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. It’s hard to find a “bright side” in complete and utter darkness.
At some point, nothing helps, and all I want is 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 evokes in them when they see me — young, healthy, getting my 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 know what it feels like for me to have cancer. It feels good when they’re excited to see me even though it’s not really me they see. This Liz is not the Liz of long and intimate friendships. This Liz is a superficial and sanitized version of Liz. 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 don’t know just how weak I am. They haven’t seen me clasped in the fetal position in bed, crying crying crying because I might die without knowing all I could be in this world. They aren’t close enough for me to push them away. When I am at the office, I am insulated from reality by professionalism. I can pretend. I can make jokes.
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.