Live Live Live

All my life, people have told me, “You look like your dad.”
“You have his bushy Barr brows.”
His long fingers.
His laugh.
His eczema.
His thick thick hair.
His penchant for reading and talking with his hands.
His love of rock gardens and turtles and silver dollar pancakes.
You’re just like your dad.
You look just like your dad.
My right hand has chronic weary skin.
That flecks and bleeds and itches so fucking bad I rip it with my teeth My right hand is always red and oozing.
My right side is where it showed up.
The right side.
The side of my dad.
I am my dad’s daughter.
I look like my dad.
I looked up to my dad.
I loved my dad.
I wanted to be like my dad.
Even before he died, I wanted to be like my dad.
It was my dream.

March 13, 2024, my dream came true
March 13, 2024, I was diagnosed with bladder cancer Carcinoma in situ is the fancy term
“In situ” is Latin for “in its original place.”
Cancer in its original place.
I was diagnosed with my nightmare
My literal worst nightmare
Come to life
My dream became my nightmare
In its original place.
I’d become my dad.

He pissed blood at 31. Mom told him to go to the doctor. He did. Bladder cancer, they said.

I was lucky. “Stage zero,” they said.
“If there is ever a kind of cancer you want to have, this is it!” they said.

But I couldn’t hear them, ’cause all I heard was cancer and cancer meant throwing up protein shakes and getting so thin your underwear falls off. Cancer meant your bones get so frail you can’t hug anyone. It meant you can smell everything and everything smells like sour apple juice and sickness. Cancer meant you’re cold and people pity you and you get IVs and wear backless gowns and no-slip socks with tiny grips on the bottom. It means wheelchairs and thinned hairs and pill boxes and hospice and morphine and last rites and it means never hearing that your eldest daughter sang “Amazing Grace” at your funeral because she wanted to but also because she felt she had to ’cause she was a girl and being a girl means you always have to perform.

I love that line in A Streetcar Named Desire, when Blanche says, “Suddenly there’s God so quickly.”

Suddenly I became my dad so quickly.

I didn’t cry until after the Zoom. It was a Zoom with my urologist and oncologist. I have an oncologist now. Chic, huh? Very 70-year-old man of me. Don’t be jealous. I fell in love with my oncologist a little. He’s not 70 and didn’t mansplain. He let me direct our Zooms ’cause I said, “I’m a director.” How cringe, I know. Whatever, I’d just found out I had cancer. I couldn’t help it. I forgave myself, so you have to, too. He let me talk about Dad and fear and he listened and looked at me hunched over with my husband, who sat beside me, utterly terrified (rightfully so). And he said, “We’re gonna fight this.” And I think that’s when I fell in love with him. Projection is common, I know. But I asked and my doctor confirmed that I’m his youngest patient with this diagnosis. Knowing this made me feel special. I’m fucked up. I know. Wanna hear something even more fucked up? I wanted to ask him, “Am I your hottest patient too?” But I didn’t. My husband was right there, so…

After the Zoom, I cried. It was brief and violent. More like hyperventilating. Like some ancient beast unearthing itself. Then I put on pants and bought a ticket to see Dune: Part Two. I walked with my headphones on listening to Ethel Cain all the way to TLC’s Chinese Theater and I sat in the air conditioned theater for the 2 p.m. matinee of Dune: Part Two. Middle row. Center. There was only one other person in there with me. A creepy dude near the back who sat directly behind me, but I didn’t care. I just wanted to watch Dune: Part Two and forget that I thought I was going to die. Forget that I had become my dad.

I walked out of the theater smack into the zombie apocalypse that is Hollywood Boulevard. It felt like a video game. Dodging Mickey and Minnie Mouse, sticky kids, buskers and dudes gifting mix CDs then charging $20 for them.

Cancer could be anywhere. And I thought it was everywhere.

I also thought – what an insane plot twist. No one would write this. It’s too on the nose. Way too cliché. The eldest daughter whose dad died of cancer – and his first one was bladder cancer – gets bladder cancer?! In her 30s? Jesus. Plus, everyone has cancer nowadays, right? It’s not special or unique. Your friend’s grandpa has cancer, your neighbor’s dog has cancer, your high school PE teacher has cancer, your middle school crush has cancer, but YOU don’t have cancer. YOU can’t have cancer. Until you do have cancer. It’s embarrassing and insane all at once. Why couldn’t I be diagnosed with something interesting like I can see unicorns now or I no longer remember what the sea tastes like? A car accident would be more thrilling, more gruesome, more narratively satisfying somehow …

I got a CT scan with contrast, which is where they put dye in your blood so they can see if there is cancer anywhere else. The CT scan guy was mean and I cried the whole time. He offered me a tissue and I took it. I wanted to say, “Fuck you and your tissue, you rude fuck!” But I just took the tissue. A small gesture of kindness, I guess. I didn’t say anything to him when it was over. I just put on my jacket and left.

I got a DNA test that checks for chromosome abnormalities. To see if anything is off. If I might be predisposed to other cancers. I never saw the geneticist who did the test. I just heard his voice. Over the phone. He sounded 70. “Never been visited by the ‘Big O’ myself,” he said. Then he laughed. But not before he said, “Jessie, there is no justice in this world.”

I found out my chromosomes look normal. No abnormalities.
I also found out
Bladder cancer isn’t genetic
What a mind fuck.
How did I get it?
My oncologist said, “We don’t know. We’ll never know. Most cells do this …” – he put his hands together and slid the top hand slightly to the right. “For whatever reason, your cells did this” and he moved his hand slightly to the left. I started treatment the next week.
I thought it was gonna be chemo or radiation. If you have cancer, it’s always chemo or radiation, right?
Funny how little I actually knew.

In movies, everyone with cancer is starved and bald and their spine sticks out. They waste away and become ashes spread in some giant body of water while their kids or siblings or parents, fuck or fight or both. And then the sun rises and people dry their eyes and they put the coffee pot on and tie their shoes and start the car and go to work, go to school, go to the grocery store. And life goes on.

The treatment I had was called BCG. Bacillus Calmette-Guerin. Immunotherapy. Six rounds of a tuberculosis vaccine inserted into my bladder through a catheter. Once a week for six weeks. I had to hold it in for two hours – or as long as I could – and rotate on the hospital bed every 15 minutes to coat my bladder. BCG stimulates your body to fight the cancer cells.

After my first round of treatment, my initiation was complete.
I was my dad, but I also became a BCG Girl.

15 minutes. I used my iPhone timer. The first time, I asked the nurse, “Do you need me to put my legs over my head to move it around?” She looked at me like I was eight with spilled ice cream on my dress. “You don’t have to do all that,” she said and patted my leg and left.

It’s hardest when you lay on your stomach, ’cause your bladder is full full full and that adds pressure and by the end, the pressure is so intense you feel you’re gonna rip open and tuberculosis piss is gonna explode everywhere.

Two times, I could only hold it in for an hour. I felt like a failure. “You can make up for it next time,” my mom said.
I would never have said that. I am not my mom. I am my dad.

My inner athlete, Miss Competitive, really hated that I’d “failed” treatment twice, so I made up my mind to do two hours the next four times. And I did. Even when it burned or it felt like I was gonna explode. I did it. I held it in. I am my dad.

I’m not sure what was worse – vaginal burning, wearing diapers on night shoots for ABC’s 911, or waiting for the results of treatment.

Actually, that’s a lie – waiting for the results was worse. Definitely.

I waited naked from the waist down for 25 minutes. I lay on a table in one of those backless gowns that make you feel like a kid, all vulnerable with your butt out. My gown was pulled up to my hips and the nurse draped blue paper sheets over me. It reminded me of crepe paper we played with as kids when we made collages.

The nurse added blue paper “chaps” over my feet that went up to my hips. Crepe paper cowboy. Yeehaw. She covered my left leg first, then my right. Undressing me in reverse. I felt more vulnerable in those crepe paper chaps than I felt naked. I don’t know why. Then she placed a blue paper sheet over me but this one had a hole in it. She aligned the hole over my vagina.

So there I was covered in blue paper with my vagina hanging out. The iodine felt cold. And the room. She added numbing gel. That was cold, too.

Then we waited.

She asked me what I was doing that weekend. It was Friday. I said “I’m just focused on this right now, thanks.” She laughed and didn’t talk to me after that.
She checked for the doctor again. I was alone in the room with my cold vagina hanging out. It felt like a science fiction movie.

The doctor came in, and I told him, “I’ve been waiting with my vagina out for 25 minutes. It’s cold!” He blushed and apologized, ’cause he was with “another patient,” and got to work. I felt betrayed when he said “another patient.” Like he was cheating on me. I wanted to rip off the blue crepe paper and shove my cold, numb, iodined vagina in his face and scream, “Who is she?!” But my betrayal subsided quickly.

His gloved hands were cold. Cold like the air. Cold like the iodine that looks like dark brown blood with yellow edges. Cold like the waiting rooms filled with 70-year-old men and — me.

“You’re going to feel my touch.”
EW! Who says that?!!!
He moved my labia minora – you know, the lips – to reveal the opening of my urethra.

It’s weird having a doctor say, “You’re going to feel my touch,” and then touch you in such a vulnerable place with gloves. No sensuality, no eroticism, just a cold, clinical “let’s move these so I can insert this thing and find out if you still have this other thing” type of experience.

The nurse who’d abandoned small talk with me stood patiently in the corner. I remember thinking, “To her, it’s just a Friday …”

My doctor inserted a long, thin flexible snout-looking contraption with a camera on the end inside my urethra. Fluid went in, too. I forgot to ask what kind. I guess it helps with visibility? Anyway, he moved the camera around the circumference of my bladder while he stared at a small TV screen above my right shoulder. It looked like he was playing a video game. “Hunting for lesions.” “Legends of In Situ.” He said, “It’s looking great. Hold on, I have a little more to go,” but my body already started shaking. I broke down. Crying. Sobbing, really. All the tension and fear poured out. The nurse asked if I wanted a tissue. I said no. I wanted to feel the tears. I wanted to taste them. “Is it still there? On my right side?”
He said “No, it’s all clear.”

All clear.

I’m clear. Radiant health is here.

I am not my dad.

I have to do a few follow-up rounds of BCG and then check-ups every couple of months for the rest of my life. What I have is what they call “a high grade lesion,” which means it tends to recur.

Cancer is a haunting.

But maybe I’ll be clear forever…who knows.

For now, it’s gone. I’m free.

I am not my dad.

I felt strange sharing this. My cancer was only stage zero. It was cancer, but it wasn’t stage IV. I didn’t have tumors. I didn’t do chemo or radiation. I wasn’t bedridden or vomiting or losing my hair.

Who am I to share a cancer story. Who am I to claim it?
Am I a cancer survivor? Why do I cringe when I write that? Imposter syndrome? Jesus, I have imposter syndrome about my cancer?!

But I realized. If writing my story in all its mess and fear and shame and ugliness and joy and tears and blue crepe paper can help someone prioritize their health, inspire them to go to a doctor when they feel something is persistently off, get a check-up, be kind to themselves, be less judgmental of others, be more open to life life life, then it’s worth risking embarrassment or shame or feeling judged. It’s worth suffering through imposter syndrome or the fear that people will think I’m a narcissist or drama queen or bad artist looking for sympathy.

I realized too, no one gets to own my story but me. This is my story. Cancer is a part of it. I own that. It doesn’t own me. I get to tell my story. I get to direct it.

I love my dad, but I am not my dad.

I am me.

And I trust myself to go through this. To keep going through this.
And to live live live.

Jessie Barr’s art exhibition, Serving Cunt: the cancer chronicles, created as a way to process the diagnosis, the treatment and healing of her bladder cancer, is at SADE in Los Angeles (204 S Avenue 19) on July 10 and 11. Go here for more info.