Can we call ourselves carcinopaths?

I've asked several women IRL what they call themselves after or during cancer treatment, and a few things came up. You are a patient, waitingwaitingwaiting in hospital rooms, but that's not how I want to identify myself, as this passive patient THING that exists only within the walls of the hospital and in relation to my doctors/hospital. I am NOT patient about cancer. I am active and involved and doing this MY WAY, and I'm still me goddamit!

You belong to this new cancer tribe, but everyone who's in it was an unwilling conscription. It took almost a year for me to feel like I was a part of the tribe. There was me, unfortunately going through some temporary cancer and cancer treatment and cancer setbacks, then WAAAAAAY over there are some cancer survivors. It doesn't help that all of the language around identity and cancer seems to be either a rose-colored HeroFighterInspiration, or a besieged PatientSuffererSurvivor. I don't feel like either enough to make it my identity.

The Cancer Community is also this loose coalition of as many personalities are in any group. So sometimes you find your people, and sometimes you find weirdos. After one of my first IRL cancer events, I was feeling bad because there was this guy there I fucking hated. He dominated every conversation with his cancer story and how he had it so much worse than anyone else and he had a book or website or gofundme that he kept pushing and I didn't even want to BE there and then there's this fucking asshole (who I'm sure was going through a lot, but I didn't have it in me to deal sympathetically with anyone else when IJUSTGOTDIAGNOSEDWITHCANCER!). Anyway, my sister on the walk home said "Just because he has cancer doesn't mean he's not also an asshole. It's ok not to like him."

The point is, what we call ourselves is tied up in this community that none of us want to be in. The women I talked to, no one WANTS to really call themselves anything. They don't want to lose themselves in the larger and overwhelming identity of a cancer ANYTHING. Survivor means a lot of things to a lot of people, and trauma has already unmoored you from your identity. That's why I want a new word, one that doesn't have the weight of expectation and history. I want a word that means "I had cancer. That is all." I think words shape how we view the world and ourselves, and I want to create a better word for a world that reflects how I see cancer. I suggest:

Carcinopath: n. a person who's been through cancer. That is all. Gr: cancer+feeling. "I don't like feeling all the cancer feelings, but when you are a carcinopath, there is no way but through emotionally." See carcinescent.

Carcinage: n. a period of time in your life that was affected by cancer, a cancer journey, usually with a negative connotation due to unrelated sound-alike "carnage". Gr: the act, result or state of cancer. "Really? You had a positive carcinage? It was CANCER, right?" 

Carcinal: adj. Gr: relating to cancer. "I love carcinal yoga; it's easier when the teacher knows how to modify for me."

Carcinee: n. one who receives the action of cancer. "Hospitals are full of carcinees: I swear cancer is getting more common."

Carcinescenct, carcinescence: one who is in the process of cancer, or a period in your life characterized by cancer. "I've never liked the label survivor, but I guess I am still in my carcinescence." See carcinage and carcinopath.

How P!nk Helped Normalize My Baldness

I got a pixie haircut the week before my second chemo. I always wanted one, and my doctor said “you are not going to NOT lose your hair,” which is a weird prevarication, but whatever. Some people hang on to their hair as long as they can. They pretend their hair isn’t thinning, that they aren’t losing clumps. I hadn’t even started losing it yet really, but my scalp was tender. It’s going to happen. It usually starts after the second chemo. The biggest deciding factor for me was my mom. She went through chemo, and she held on to her hair. Then one day at dinner she BROKE DOWN in tears and said “I am TIRED of EATING MY HAIR!” So we went in the downstairs bathroom, and Les shaved mom’s head while she cried.

I don’t want to do that. I don’t want my experience to be like mom’s. Most things, she showed me how to handle, but this…. this, I did the opposite. So I got a pixie haircut for a week, then I shaved my head. Well, Kent shaved my head while playing the Game of Thrones Shame app (shame! Shame! SHAME!). I did rock a mohawk in the interrim so I could look like P!nk.

I’ve always fucking loved P!nk. She was my first and best “angry girl music.” I was a junior in high school and I loved her hair and her style and her voice and her strength. She has always been my power music. “Can’t Take Me Home” was the first album I ever bought. She is beautiful and amazing and CUT. I am seriously in love with P!nk and her music has been a part of my life and getting me through hard times. I’m usually not a music person, like I don’t need it or listen to it every day or anything… but P!nk is my exception. I like other music and musicians in a vague way, but I fucking love P!nk. She speaks to my soul. My soul is surprisingly poppy!

So when I had to cut my hair, who did I use as an example? I gave the hair dresser a picture of one of P!nk’s pixie cuts. Life cannot be bad if I look like P!nk. I should have also dyed it, but that sounded like too much work, and P!nk herself says that pinkness is a state of mind rather than a color.

That’s the best part of celebrity culture. P!nk is someone I can point to and channel and say “P!nk would do this” or “P!nk wouldn’t do this.” And I can tell you right now that P!nk wouldn’t give a fuck if she had a shaved head. Plus, got to look like a girl you wouldn’t wanna mess with, heavy makeup and everything. 

This is just a way for to reconceptualize my current life, and it comes with a soundtrack! According to P!nk, I’m not dead just floating. According to P!nk, I’m not scared just changing. Thank you, P!nk, for giving me a way to reframe my current experiences. And for being such a hot, powerful bad ass. Also, you wanna hang out sometime?

So You Have Cancer: Discovery

What do you do when you find out you have cancer? After talking to Mimi, we have a pretty solid list:

  • Tell who you want
  • Delegate who you can
  • Don't make decisions you don't have to make
  • People are going to have crazy reactions
  • Be kind to yourself--you are in shock
  • Let people help you
  • Get over the blame game--it's misdirected anger and a waste of energy
  • Find mindless happiness or distraction--might I suggest 12 hours of silly cats on YouTube?

In retrospect, my own "D(iagnosis) day" was so surreal. I got the call on August 16 at 8:15am. I was getting ready for work, excited to get in early. It was my six month anniversary at this position, and I had a lot to do. The nurse practitioner called to tell me that the breast mass was cancerous and I would absolutely need surgery, probably chemo, probably radiation. I didn’t really hear anything after cancer. Cancer? I didn’t process. I couldn’t process. After she told me, she asked if anyone was with me. I said no. I’m all alone.

We hung up. I couldn’t focus. I couldn’t stop crying. I didn’t know what to do. It’s 8:15 in Boston which means 6:15 in Utah. I am going to ruin everyone’s day with the news. I couldn’t stomach waking anyone up AND ruining their day. So I won’t call family yet. My mind keeps on slipping away from how to tell people. I can’t stop crying.

I can’t go into work, which means that I have to tell them I can’t work. I’ve never called in to this job. Can I text them? Probably not. That doesn’t seem professional. I can send an email. Maybe this is a face to face talk? What do I tell them? I google “how to tell your boss you have cancer.” I get a lot of tell them in person, keep it professional, focus on the job, how this affects the job. My mind keeps on wandering away from the topic. I try to focus on that I have to tell work, how to tell work. I can’t focus. I can’t stop crying. I google, “how to stop crying.”

It’s 9:00 now. I write an email to work about cancer. I write a whole email. Bullet points. But I don’t really know anything. Not really. I know that I can’t work today. When can I work? I don’t know. I should do this in person. This seems like an in person conversation. Which brings me back that I have to stop crying. I have to stop crying long enough to walk to work and tell them in person. It’s 9:30 now. I focus on I have to tell work. I focus on I have to stop crying. I should call someone in Utah. I can’t. What do I say? I have to stop crying. That’s the first step.

I spend another 10 minutes trying to stop the tears. I don't have to look happy; I just have to stop the visible sobs. I put on shoes and make sure I have my keys. I get downstairs and realize I forgot my badge. And I need a tissue. I go back upstairs, get a tissue, walk back downstairs. Remember I forgot my badge. Go back up, get my phone, go back downstairs. Realize I still don't have my badge. Walk upstairs repeating "I cannot get into my building without a badge." Finally get my badge. Walk downstairs, not crying because I am too annoyed at myself for forgetting my badge. Eight minute walk to work, don’t make eye contact, one foot in front of the other. Go into the office, walk into my office, I don’t see anyone, get my laptop. Walk upstairs to talk to my boss without having to see anyone.

As I approach her office, I see my boss leave it, clearly in a hurry, her arms FULL of carpet and paint samples and rushing to a meeting. She sees me. Asks if I’m ok. I shake my head slowly, tell her I need to talk to her and the manager. Right now? she asks. I nod. We walk into the manager’s office, close the door. I sit. My boss is hovering anxiously.

"I say, you know how I’ve been going to a lot of doctors appointments lately? Turns out I have cancer." They are shocked, they are asking questions. I say, "I can’t talk about any of that. I can’t come into work today." My boss says "OF COURSE YOU CAN”T FUCKING COME INTO WORK RIGHT NOW! WHY ARE YOU HERE?"

I tell her I have appointments tomorrow. I don’t know anything, if/how it will affect work, that I will do my best to minimize the effect on the lab. I say, "When I said I could have this job for the rest of my life, this is NOT what I meant." They are horrified. I am amused. My boss says, "let me walk you home." I say that isn’t necessary. She insists. It’s probably a good thing she walked me home. I’m pretty clearly in shock. Probably. I don’t know, can’t focus.

I come home. Next step: tell the family. Who do I call? My mind keeps on slipping away. Most of my conversations go like this from my end:

"Hi. Uh, where are you at right now? What are you doing? Who’s with you? Are you in a place where you can talk for a couple minutes? Ok, so … so I’m going to ruin your day. I have breast cancer. Yes, like mom. I mean, hopefully not dying like mom. Maybe? I don’t actually know. Probably not. I should say definitely not, but I don’t actually know that. Maybe I should say it anyway for the positivity of it, right? Ok, it sounds like you are having a lot of emotions about this. You should… you should talk to someone about this. Not me. I can’t handle this. Call…. call someone else. Ok, I’m gonna go. Have a nice day. No, social niceties are inappropriate here, right? No social niceties. Call someone to help you through this. Ok. Bye."

No matter what, the diagnosis is going to be surreal. You are going to feel like your life got turned upside down, like you don't know who you are or what your future holds. This disconnect is reinforced by how weird you act and how weird everyone around you acts. Everything is just off while you deal with this new shape of the world around you. My dark humor and making everyone uncomfortable got me through. I'm sure everyone wishes I would have picked another coping mechanism.