What Cancer Takes: A Trans Perspective

Waking up in the ICU, post-thoracotomy

“when I introduce myself
I want to write in pauses with the moments
that people see me and they see me
the moments they pause with me
in unison, solidarity
of my true identity…” – Fabian Romero, from “My Name,” Troubling the Line

“you try to remember the first time you said i’m sorry
when you should have said fuck you. you hurt me.” – Jamie Mortara, “BREADCRUMBS,” GOOD MORNING AMERICA I AM HUNGRY AND ON FIRE

“friends, my friends–

bloom how you must, wild

until we are free.” – Cameron Awkward-Rich, “Cento Between the Ending and the End”

When I was 32 I finally came out as agender. Because I don’t identify with the gender I was assigned at birth, I consider myself transgender. And because I don’t identify as either man or woman, I identify as non-binary. I came out because I finally felt like I was in a safe-enough environment to do so. I was living in a progressive area, working at my dream job. I felt surrounded by people who would support and accept my true self. If I jumped, I felt arms would reach out to catch me. I found Home. My coming out didn’t go as well as I expected. Some people did accept me without reservation. Some took time. Some didn’t seem to believe me. But overall, I felt safe at first, cradled in more privilege than so many in my community.

I started to allow myself to dream again about the person I am, to reconnect with the kid I used to be before I was bullied into silence. I changed my clothes back to something that finally felt comfortable. Got the haircut I always wanted. Step by step, to the best of my ability, I became on the outside who I was within, the person I’d kept locked away for decades. I wanted to get my license changed to non-binary. I wanted to get my name changed to Jae. I wanted to eventually get top surgery, whenever I could afford it, and as soon as I could face my fear of surgery and doctors.

But then I moved back to my hometown, in a red state, in a particularly intolerant and ignorant city. The year after I moved back, the school board passed an anti-transgender policy. They did so while looking my sister and I in the face, both of us present and having testified before them about the dangers of the policy. Then the year after that, the state passed and the governor signed into law two anti-transgender bills in the middle of a pandemic. I mean, there’s a reason I buried my gender identity when I was a kid and moved away as soon as I could.

And then I got cancer, and all those things I wanted to do slipped firmly out of my reach. If I pay $300 a month toward what I currently owe just for my diagnosis, and all the charges haven’t been added to my bill yet, it will take 20 years for me to erase that debt. And that’s not counting the surprise bills I receive separately from providers outside the cancer center. This month, those totaled $700. If I survive this cancer, I will simply never be able to afford a top surgery now. And more than that, I can’t even bind, first because of the thoracotomy, and now because of my port and the chemo.

In the office of the cancer center, there’s a mural that lists all the things cancer can’t take from you, such as love and friendship and memories. It really irritates me because it’s a lie. I know people with cancer who were abandoned by their partners because the road was too rough. And people who lost friends because those friends couldn’t deal with the darkness. And what about the people with brain cancer, who do literally lose memories? Cancer takes everything while the world tells you to keep smiling.

At the cancer institute, some of the doctors and nurses don’t know what to do with me. It feels like I’m the first gender non-conforming person they’ve seen in this area. My style is masculine, my pronouns are etched into my glasses, and I don’t shave my legs (BIG deal in these parts). A couple nurses seem particularly uncomfortable about this. I display my unshaven legs proudly, without shame. But otherwise, I don’t assert my gender identity (please note, everyone expresses their gender differently, and the way I express mine does not represent how every agender person represents theirs). Honestly, I’m too afraid to. My life is literally in these doctors’ and nurses’ hands, and I’m in a religious stronghold where church leaders have recently and consistently expressed intolerance of transgender people.

On each form, I’m forced to choose between male and female, although I notice there’s a space for gender identity and sexual orientation. I imagine some well-meaning person fighting to get these spaces added, and when they succeeded, called it progress. I can hear them making their case: “These fields will show the lgbtqia community that they’re welcome at our institute.” I can hear their PR department applauding. I even agree with them, believing that such fields should be present on every form. But the presence of these fields doesn’t mean it’s safe to fill them out or that I feel welcome at this institute.

Just as the anti-discrimination law in the city next to my hometown doesn’t guarantee discrimination won’t or doesn’t happen. I remember when my sister and I were searching for an apartment there, and when we arrived to look at one, the landlord took one look at me and said there were no apartments available. If I complained and the city decided to challenge them, they could claim any number of reasons for turning us away. And where would we get the money to pay the lawyer to sue the landlord for discrimination? And why would we want to live in a place with an intolerant landlord?

The gender identity and sexual orientation section of my chart tortures me. I’m torn between listing agender and asexual, an act of pride and defiance and representation, and leaving the fields blank, an act of protection. Again and again, I decide to leave both blank. Is this cowardice or self preservation? Is filling out the fields foolishness or bravery? Why must I make this choice? Would my care change if I asserted my identity? When we first arrived, the nurse insisted I specify a religious preference, and saying “no religion” in this state, in this city, sent a blast of cold down my spine. How to describe being at one’s most vulnerable physically and emotionally in a place that feels least safe?

And I endure the misgendering, gritting my teeth against it, feeling like a coward each time I don’t correct someone. At the top of every chart, encounter note, test result: “[Non-preferred name] is a 35 year old year old [incorrect gender]…”. When the doctors discuss, write about, share my case, I will fall into one of two categories. In medical literature, my true gender will be forever invisible. In cancer data, as in so many other areas, we non-binary people don’t exist. We’re tossed into the category we were assigned at birth. Our identities are stripped from us, the price of treatment, the price to exist without really existing.

In the middle of the night, I’m awake in the dark. I’m thinking about what people will say about me when I’m gone, unofficially and officially. In word and on paper. I’m wanting to control their use of pronouns. I’m wanting to choose who can speak. I’m wondering if someone will step forward to correct. I’m thinking about how fragile truth is, how it’s housed in that which falls apart. I’m trying to let go.

Before my CT-guided core needle biopsy, the nurse asks me what name I prefer to go by. I don’t say J. Every muscle in my body is tense because I’m nervous about the procedure. The nurse gets blood all over the bed and floor trying to put the IV in. She’s young and seems nervous, too. But she’s nice. I pretend she didn’t hurt me. When she goes into a nearby room, I hear her tell whoever’s in there excitedly, “Her [cringe] arm is so pale, you can see all the veins and arteries!” I look down at my arm and am surprised to discover she’s right. I wonder why I didn’t notice that before.

The doctor comes in to speak to me before the procedure. She reminds me of Ripley from Alien. I relax. For this biopsy, I’m in a semi-conscious state. I remember waking up every now and then from the instrument jerking inside me, but it doesn’t hurt. I feel safe. I’m relieved to not be under full anesthesia. I’m wheeled back into the recovery room, and my sister is brought in. I must have said something about my gender during the procedure because the nurse (a different one) tells my sister, “They’re right in here.” My sister says the nurse used my preferred name and correct pronouns in the waiting room.

This nurse checks my vitals. She’s warm and friendly and says that, even though I have a smile on my face, she knows what I’m going through inside because she also had a cancer scare. I feel seen and cared for and profoundly grateful.

The nurse who’s supposed to prep me for my thoracotomy makes me extremely nervous. She seems uncertain about many things, and she seems very nervous about putting in an IV. She stacks surgical gloves filled with warm water on the arm she plans to put the IV in. I can sometimes be a “hard poke,” because when I’m nervous, my veins go into hiding. This is why I always wear a warm, long-sleeved shirt to appointments. She brings in at least 4 IV kits. Oh god.

As she prepares to insert the needle, she pulls her glasses down from her hair and squints at the area. Then she puts them back up. Then pulls them back down and adjusts them. She sticks the needle in and digs around, digs around. I feel my body start to melt, and I’m afraid I’m going to start shivering. Finally, she gets it, and to my great relief, it works.

I soon learn that this nurse can decide if I’m up for the surgery or not. She covers my unshaven legs as if she’s doing me a favor. She asks if there’s any chance I could be pregnant. I grit my teeth and shake my head no. But I find out later that she runs a pregnancy test on me anyway. This feels like a violation, as if my word is not good enough. She asks me when my last period was and the duration. Because my period has been short these last couple months, she tells me I’m lucky and “how nice that must be.” My stomach turns molten. My period is only short right now because of the anemia. Yeah, I feel very fucking lucky. This period talk, this elbow-bumping “we’re all women here” vibe grates against me. This category-reinforcing small talk.

My surgery is delayed a couple hours. At one point, I’m wheeled into another room for a nerve block. I sit on the edge of the bed, a screen in front of me and to the right a bit. And three doctors gather behind me with what can only be described as a long fucking needle. They push it into my back, and I watch on the screen as the needle sinks deeper and deeper. The doctor with the needle is learning, the other instructing. The student misses the intended space a few times, and the instructor takes over. I feel a touch of tenderness toward the doctor who’s learning, even though I’m in pain. It’s disturbing but also extremely interesting to watch their progress. I appreciate the description. I feel included in this moment of learning. When I’m wheeled back to the room, I’m shaking uncontrollably. They tuck me back under a heated blanket.

By the time the nurse leaves, she’s softer. As she says goodbye, I can tell by her face that she cares deeply. I forgive her for the IV, and the questions, and the missteps. I realize she was probably as nervous around me as I am around her. I look forward to a day when she’s not nervous around gender non-conforming people, and I’m not nervous around cisgender people who have power over my life. I try to believe that day is possible.

I feel nothing but acceptance from my new oncologist, and it absolutely surprises me. And then I feel sad about being surprised by acceptance. He doesn’t once give me that glance that I’ve grown used to, the one that says a person doesn’t see someone like me every day, the one that’s often full of disapproval or judgment or discomfort. He is casual and relaxed in my presence.

He asks me once if I’m concerned about my ability to have children after treatment (people undergoing this chemo regimen often have their eggs harvested beforehand because there’s a very good chance it will make them infertile). I tell him no, and he doesn’t challenge me at all. He doesn’t ask, “Are you sure? Because there’s no going back.” He doesn’t give off an air of disapproval about my not wanting kids. He just accepts my answer, accepts that I know what I want, accepts me. It’s so refreshing. It increases my trust. I’m so grateful that I sought a second opinion, so grateful for my primary physician who referred me to this excellent team, so grateful for this oncologist who makes me feel like I can relax.

For the first time since they found the mass I feel like, no matter what happens, it might be ok.

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