I Was So Embarrassed by My Illness I Could Barely Say It

On the way home from the doctor's office after getting my diagnosis, I read the results of my Google search to my husband as he drove.

"Anal cancer. A rare form of cancer usually linked to sexually transmitted HPV. Risk factors include Multiple sexual partners..."

My voice trailed off. Oh no, did I have slut cancer?

What? I'd been married for a million years! But I also remembered back in college my gynecologist saying: "You have human papillomavirus (HPV), don't worry it's common, harmless, and will probably go away by itself."

Who knew my college fun would come back to bite me in the butt? Literally.

It was May 2022 when I had another "don't worry, it's harmless" from a doctor. I'd been bleeding and uncomfortable, but my doctor said it was just a hemorrhoid. Easy peasy to remove. We scheduled an outpatient procedure to remove it the following week.

After I woke up groggily from the anesthesia, my husband was holding my hand and the doctor looked concerned. My stomach tightened as she spoke.

"It's not a hemorrhoid, it's a tumor. It's cancer." And they couldn't remove it.

That car ride home I Googled frantically to educate myself about a type of cancer I didn't even know existed. Anal cancer is rare, afflicting about 9,000 people in the U.S. a year, but the numbers are rising. It was in the spotlight when Farrah Fawcett died from it almost 15 years ago, but otherwise rarely discussed. She was kind of slut-shamed about it at the time.

I didn't want to tell people I had anal cancer. Cancer, alone was a traumatic conversation. Add anal—such a loaded word. I'm a children's book author whose book covers are pink and have sparkly glittered covers. I'm a goody-two-shoes Disney Channel writer. Not to mention that I'm highly squeamish. Fart jokes? Potty talk? Not for me.

After I told my family, I called my writing partner.

"So...I have some rough health news. I have cancer," I said.

"CANCER?!" Insert appropriate shocked, upset, and compassionate responses. "What kind?"

"Um, tush, rear end, ass..." I tried to tippytoe around it. "Okay, anal. Like it's not enough to have cancer, I have to be mortified by saying it."

"It's a body part," he replied. "You know the old saying, opinions are like assholes, everyone has one. Yours just has cancer up it. Oh hey, if you Google the first part, it pulls up porn....hey..."

"Just go for it," I sighed.

"Heh heh heh," he laughed a Beavis and Butthead laugh. "She said anal."

My colleagues are writers and entertainers, whose careers and coping mechanisms are often entrenched in gallows humor. The gifts began.

"What is this?" I opened up a package to find a homemade membership card with "Anal Cancer of the Month Club." First up: Socks with mottos: I'm a badass!

In my hospital's gift shop, there was a huge wall of ribbons to support virtually every kind of cancer—except anal. A friend had one made for me—in brown.

Meanwhile, I started my regimen: Five days a week of chemo by pill with two IV doses interspersed and daily radiation for six weeks.

Honestly, it didn't seem so bad. (Spoiler alert: don't get too comfortable). I popped a pill, then I went to the cancer hospital to lay on my back with my legs out in "frog position." I felt awkward but it didn't hurt as the radiation would beam at my privates. I had my first round of intravenous (IV) chemo, resting as it infused into my arm.

But the side effects were starting to get to me. Crushing fatigue. Relentless stomach issues and it was excruciating to go to the bathroom.

Receiving my clever, often inappropriate gifts was salvation, I cozied up in a Skims robe (from Kim Kardashian's clothing line, she's famous for her ass, get it?), drank tea from a butt-shaped mug, read the '70s Playgirl magazine featuring Geraldo Rivera–OK, I never opened that one, his was not a butt I had planned to see.

Then after my second round of IV chemo, things took a turn. Everything that had been put into me poured out in a radioactive neon green. I lost 30 pounds in a week.

I would spend 37 days in the intensive care unit (ICU) at the cancer hospital.

They say "laughter is the best medicine." In my hospital delirium, apparently, I WAS unintentionally humorous. When the intercom announced "Stroke Alert"—meaning an incoming patient was having a stroke—I thought they were saying "Joke Alert" and demanded people in the room tell me a joke. (Well wishes to all of those patients).

I had conversations with my new bestie Brutus Buckeye, the hospital mascot sticker on the wall, and told him about my own mascot days as Chuck E. Cheese.

Each day, the doctors would come in and ask me basic questions: Where was I? Who was president? Why was I here? I said Ronald Reagan, I was at summer camp, I'm here for a cold. They told me later that for weeks I answered every single question wrong. Then after they left I'd yell wait! Bring them back! I know the answer! The president is Obama!

But anal cancer, no joke.

I don't remember much: The incessant beep beep of the machine feeding me fentanyl, oxy, and nutrients, my husband and mom taking turns sleeping in the chair next to me, the doctors' voices getting increasingly somber.

I was aware my body was shutting down. For several days, I couldn't open my eyes but I saw a tunnel of darkness with two pinpricks of bright light. I don't know if that's the tunnel people speak about, but I felt the darkness cut so deep into me, like the deepest depression.

My kids were called to come back to town. Hospice was called. The doctors told my family they'd know in 48 hours which way things would go. I had no idea what was happening around me.

Then the two pinpricks of light became three, and four, and corresponded with my white blood cells leveling up. I was "coming out of it."

I lifted my head off a round blue pillow from a science museum—Uranus. I laughed, I got the joke. Another gift.

A big deal was made of me being able to get out of bed and wheeled to the bathroom. I was shocked at the gaunt face with thinning hair looking back at me in the mirror, but what was that stuck to it? A removable sticker that said: "This is the beautiful face of ass cancer."

Another gift.

After five weeks in the ICU, I was released with an IV bag that fed me and a box of fentanyl patches—but home. I'd have to wait six (blurry, wobbly, processing the trauma) months until my scans when my doctor sat down and said those fork-in-the-road, life-altering momentous words:

"Looks good."

I'd achieved NED (No evidence of disease. I just got teary when I typed that).

The Centers for Disease Control and Prevention (CDC) estimates 1 in 5 Americans are currently infected with HPV. The HPV Cancers Alliance, led by actor Marcia Cross (of Desperate Housewives fame) and Lillian Kreppel who both had anal cancer, has a mission to educate and destigmatize HPV-associated cancers.

Their emails start: "Dear Anus Angel."

Two months after I was cleared, in April 2023, I took my first trip since my diagnosis to Capitol Hill, as part of the HPV Cancers Alliance, helping educate congressional leaders and advocating for federal funding and legislation in support of HPV awareness and the six cancers HPV causes. And now a bipartisan bill, Prevent HPV Cancers Act, is being reintroduced.

All over Capitol Hill, people recognized Marcia, many asking for a picture—and asking why she was there. And she told them.

So, like Marcia, I want to take ownership.

I didn't want to be a "face of ass cancer," but here we are.

Women are generally only screened for cervical cancer and a colonoscopy won't detect anal or rectal cancer. According to the HPV Cancers Alliance, to prevent anorectal cancers you can ask your gynecologist to perform a DARE–digital anorectal exam, which is not part of a routine exam but can detect abnormal masses.

Julia DeVillers is a bestselling children's book author with Simon and Schuster, Penguin Random House, and American Girl. She also sold a TV pilot to CBS inspired by her life. One of her books became the Disney Channel movie Read It and Weep. She has been featured in the New York Times, People, Buzzfeed, and on NPR's Weekend Edition. She is represented by UTA. Visit www.juliadevillers.com for more.

All views expressed in this article are the author's own.

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