I'd Rather Be Dead Than Deaf: A Young Woman's Journey With Liver Cancer

Introduction by Andrea Wilson Woods, the author’s sister, parent, guardian, and editor of this book

My life as a parent started on December 19, 1994, when an exuberant eight year old bounded off a plane and into my arms. The stewardess running after her laughed, saying, "You must be her sister, Andrea."

Adrienne chimed in, "Yep. She’s my Sissy."

Neither one of us knew it at the time, but Adrienne’s two-week holiday visit to Los Angeles would become a permanent stay. The day after Christmas, three days before her 50th birthday, our mother called. She asked if I could keep Adrienne for a while. She was tired, ill, and incapable of being a mother. She refused to tell Adrienne the news herself. I was twenty-two years old, living with an alcoholic boyfriend, and had little money and no job stability—but it never occurred to me to say no. Adrienne’s father died before she was born; I was the only person she had.

Within months, Adrienne challenged me. Our mother had let her run wild, so Adrienne was used to doing whatever she wanted, whenever she wanted. When the staff at a local restaurant sang Happy Birthday to her, she screamed and melted down like a two year old pitching a temper tantrum—only she was nine. I carried her out by her arms and legs, worried that someone would call Social Services. When we arrived home, I sent Adrienne to her room. After a few minutes, I walked in to discuss her behavior with her. She was still thrashing her body around, yelling she hated me and asking why I made those people sing to her. I grabbed her arms and pinned her down. I slapped her forearm to get her attention. It worked.

"You live here now. My house. My rules. You do not make scenes in public. Understand?"

"Oh yeah, I’m moving back to Alabama," she said.

I may have stopped her body from moving, but I couldn’t do anything about her mouth.

"I don’t like you. I don’t want to live with you. I want my mother, and I want to go home!" she yelled.

I looked into her eyes and wondered if I should tell her the truth.

Mother was caught shooting up morphine at work. She lost her nursing license, so she can’t get a job.

Or, you have no home; no one in Alabama wants you. Even your father’s family doesn’t want you.

I said none of those things. Instead, I called her bluff. I released her arms, walked over to the desk, picked up the phone, and dialed 411.

"May I have the toll-free number for Northwest Airlines, please?"

Adrienne watched me in silence as I made a reservation in her name for a flight out the next day to Birmingham. I pulled out her two suitcases.

"Start packing, kiddo."

She glared at me, crossed her arms over her chest, and refused to say anything as I left her room.

Meanwhile, I stayed in the living room, hoping I had done the right thing. I knew that moment was a turning point. Adrienne had to accept me as her authority figure, or this arrangement would never work. I heard her moving around in her bedroom, shuffling something, slamming something else. What would I do if she packed her things? I waited. It took almost an hour, but Adrienne finally came out.

She stared at the ground. "Okay. I want to stay. Don’t send me back."

Thank god. I didn’t have the money anyway. Using one finger, I tipped her chin up until her eyes met mine.
"Here’s the deal: I’m your parent first, then your sister, and when you get older, I hope to be your friend. Got it? And one more thing: don’t ever threaten me again."

"Alright, Sissy. Parent, sister, friend—got it."

Later, Adrienne painted this piece of artwork to solidify our agreement. I called her my little Jackson Pollock.

For the first four years of Adrienne’s life, I lived with her and our mother, attending high school in Birmingham, Alabama. I held Adrienne within minutes of her birth. I remember her first steps. Her first words. We spent so much time together that most people assumed I was her mother. With our fourteen-year age difference, it was biologically possible, though we didn’t look much alike. She inherited our mother’s olive skin and dark hair and her father’s green eyes and taller stature. By her teens, she grew to be three inches taller than me—not a huge accomplishment, given that I’m under 5’3", but she enjoyed teasing me about it.

I often think about those four years that I call the In-Between. I left home in August 1990 to attend college in Los Angeles, California. I abandoned Adrienne, leaving her alone with our mother. Though I could not have predicted how much or how quickly our mother’s life would unravel, I wonder if things would have turned out differently if I had stayed. Or if I had taken custody of Adrienne much sooner. I’ll never know. During the In-Between, frequent phone calls and visits strengthened the bond between Adrienne and me. For every mile of the 2000 that separated us during that time, our relationship became unbreakable.

I don’t remember if Adrienne began talking, reading, or drawing first. All three seemed to occur simultaneously, like a volcano erupting. She always had a lot to say. A friend once said talking to Adrienne was like drinking from a fire hose; she had too much to say and not enough time to say it. She devoured books from almost every genre. By age ten, she was reading college textbooks about Egypt, mythology, and religion because she liked the subjects. Then there was her art. She always had a pencil, pen, or crayon in her hand. By kindergarten, she was painting, too. The last Christmas I visited home, the last Christmas she would ever spend under our mother’s care, Adrienne presented me with a painting. She smiled as she handed me the wrapped gift, which felt heavier than I expected. Our mother had already framed it. At seven years old, Adrienne deemed herself an artist.

I’ve never loved anyone the way I loved—and still love—Adrienne. Deeply. Unconditionally. Raising her will always be the best thing I’ve ever done. Nothing else comes close. When Adrienne was diagnosed with primary liver cancer (i.e., hepatocellular carcinoma) on May 16, 2001, the world as we knew it evaporated into nothing. Or rather, dissolved into something new. Together with an army of family, friends, doctors, and nurses, we spent 147 days battling the disease. We declared war on cancer like President Nixon did in 1971 with the same results. We never had a fighting chance. We lost because Adrienne is no longer with us.

Yet, Adrienne never let cancer take away her spirit. Even when she had no strength left, she kept fighting. And reading. And writing. And drawing. She also set firm boundaries. Adrienne lost her mind when she realized the chemotherapy drug cisplatin could cause permanent hearing loss. She loved music, and she was a budding musician. For her 15th birthday, one month before her diagnosis, she received a black Fender Jazz Bass. She could not, would not, lose her hearing, telling the oncologist, "I’d rather be dead than deaf." When the first signs of hearing loss occurred, we honored her wishes, and she never took that drug again.

One year after Adrienne died, I found myself so mired in grief that I considered jumping out of the top of the Ferris Wheel at Santa Monica Pier. But I didn’t like my odds of succeeding. I couldn’t be sure if I would land on the concrete or in the ocean. I resisted similar urges to jump off buildings and mountains. Then, I developed an infallible suicide plan but never executed it. Suicide is selfish, so I sought new ways to channel my grief. That’s when I founded Blue Faery: The Adrienne Wilson Liver Cancer Association.

About Blue Faery
Founded in 2002 in Burbank, California, Blue Faery’s mission is to prevent, treat, and cure primary liver cancer, specifically hepatocellular carcinoma (HCC), through research, education, and advocacy. Our work improves the quality of life for HCC patients, supports their caregivers, and gives them hope, information, and a voice. Blue Faery hosts an online Liver Cancer Community for patients and caregivers. Blue Faery provides free comprehensive patient education resources with our Patient Resource Guides for Liver Cancer. Blue Faery has numerous educational and awareness programs, including Love Your Liver, The Truth About Liver Cancer, and You and Liver Cancer. Additionally, we developed the Blue Faery Award for Excellence in Liver Cancer Research. The award is granted each year on April 8—Adrienne’s birthday.

All proceeds from the sales of this art journal go to Blue Faery. Learn more at bluefaery.org.

About Adrienne’s Art Journal
I feel blessed to have raised a child who left so much of herself behind. With numerous handwritten journals, her online journal, and her emails, Adrienne’s voice feels present, like she is standing beside me, whispering in my ear. And so much art! I own a large art portfolio case that isn’t big enough to hold the many drawings, sketches, and paintings Adrienne produced. She experimented with almost every medium, every tool, and various subjects. From pencil, ink, marker, crayon, charcoal, chalk, and pastels to watercolor, acrylic, oil, collage, multimedia, and digital photography, Adrienne created a world that gives us insight into her imagination.

The artwork in this journal spans Adrienne’s life from age seven until weeks before her death at age 15. I’ve made every effort to maintain each piece’s integrity. In some cases, especially with older works, I modified the art to increase resolution, improve visibility, or enhance the colors.

Despite her incredible intelligence, Adrienne was a notoriously bad speller. Though I haven’t corrected every grammatical error or changed the context of her writing, I have fixed the numerous misspelled words. Also, I’ve changed her friends’ names to protect their identities.

Thank you for reading this book. You’ll discover why I call Adrienne, "The best kid ever."

Andrea Wilson Woods
Parent, Sister, Friend
October 2023

Adrienne: In Her Own Words
Editor’s note: I found this email in Adrienne’s Draft folder after she died. To my knowledge, she never sent it.

Basics
Name: Adrienne, that’s all anyone needs to know.
Nicknames: Xio, Dazzledxio, Kiddo, Sweetie (hm…)
Age: 15
D.O.B.: April 8th
Zodiac: Sun = Aries, Moon = Aries, Rising = Libra, CONFLICT!
Location: Depends on where I am, don’t it?
Born (where): Birmingham, Alabama.
Raised (where): In 20 different locations.
Parents: In my eyes, Sissy and Johnny, truly Myra and Todd.
{Andrea-Adrienne Spring 1996.jpg}
Siblings: All half-siblings: Andrea (aka Sissy) and Aidan on me Mum’s side, and Beth and Jay on my father’s.
Pets: Little Bit, Marinol (arrrrrgh), and Xiola

Favorites
Color: Blue, Orange, and Black and White (when together in a checker pattern).
Color to wear: Blue?
Hair color: None have I.
Book: Anything written by Edgar Allen Poe, Brian Froud, and JR Tolkien, a few Anne Rice books (First three in The Vampire Chronicles), The Phantom Tollbooth, Midnight, and many others…
Movie: Anything directed by Tim Burton, John Waters, or Perry Farrell and anything starring Steve Buscemi or Dave Navarro (haha, DAVID MICHEAL).
Food: I don’t eat much lately…
Drink: Blue Powerade (notice a pattern?).
Actor: STEVE BUSCEMI!!! Um, and Dave I guess, Perry’s kinda funny too…OH! And Robert DeNiro and Tim Curry.
Actress: Uh, Kirsten Dunst, haha, um I dunno.
Store: Aahs, Tumblin’ Dice, Squaresville, Rock-A-Way, the gift shop at The Standard too if that counts.
Singer: Perry Farrell, Dave Navarro, Shannon Hoon, PJ Harvey, the girl from Cocteau Twins, Scott Weiland, TOMMY (hahahahaha), um, Johnny boy, and a bunch I’m forgetting…
Band: Jane’s Addiction, um…does Dave’s band have a name? Psi Com, Deconstruction, old RHCP, STP, Blind Melon, Mozart!, White Zombie, Black Sabbath, Ours, Primus, it really depends on my mood…
Vehicle: 1968 two-toned baby blue VW Van.
Flower: Dried roses.
Subject: English and Science.
Teacher: Mr. Hines, Ms. Castleman, Ms. Bennett.
Pizza: Hate it.

Have You Ever
Killed someone? riiiiiiiiiiiiiiiiiiiiiight.
Wanted to kill someone? At times but it passes…
Wanted to kill yourself? Next subject.
Swallowed a bug? Nope, but my cousin did once.
Smoked? Once when I was 6 trying to figure out why my aunt liked it so much.
Did drugs? Fuck no, not after losing the people I did due to them.
Seriously hit someone? Yes.
Been threatened? Many a time.
Lied? Often, but only to those I don’t like. >:)
Skipped school? No desire to.
Been looked at like you were crazy? You walk around bald with a mask on and looking like a skeleton and then tell me you WEREN’T looked at.
Why? Chemo affects your looks quite a bit. I guess people have never heard of illness before or seen victims of it.
Broken someone’s heart? Perhaps.
Had your heart broken? Not that I can remember.
Took someone else’s advice? All the time.
Been on TV? Thank heavens NO.
Been on the radio? Um…no.

Friends
Best: Eli, Andy, Nadia, and Dave in some ways.
Funniest: All of the above.
Loudest: Anya (Sissy’s friend), argh.
Craziest: Nadia and Andy.
Needs Most Advice: That’s an insult, and I don’t insult friends.
Gives Best Advice: Dave.
Prettiest: Dave, ahhaha.
Strongest: ?
Weakest: Emotionally or physically?
Quietest: Eli.
Most Outgoing: Not sure.
Most Hyper: Lori and Nadia and Andy, easily.
Weirdest: Me. :)
Most Childish: Dave at times, and Nadia (in a good way).
Bravest: I dunno.
Most Honest: Dave, Andy, and Eli.
Sweetest: Eli and Andy.
Most Caring: Hm…all of them?
Smartest: I only make friends with the intelligent.
The one that probably won’t graduate: Dave hasn’t.
Do you trust your friends? Yes.
Do they trust you? Hope so.
Do you like your name? I like Xiola better.
What do you wish it was? Like I said…
Do you have a BF/GF? Eli.
What’s his/her name? Eli.
Do you love them? Very much so.
How long have you been together? Almost 11 months.
Do you have a song? Yes…
Do you have a crush? Kinda can’t when you’re involved with someone.
What’s his/her name? ::banging head on table::
How long have you liked them? Ok, I’m skipping these.
Where did you meet them?
Do you think that you’ll go out?
Do you ever want to get married? Perhaps.
At what age? No idea.
Do you want to have kids? Not really.
How many? ::sigh::
Boy or Girl? If I could choose, girl.
What will be their names? Xiola.
At what age will you have them? I don’t even know if I want ‘em.
Do you have a job? Can’t work.
Where? Look up.
Do you like it there? Where?
If not, where do you want to work? No idea.

This or That
Music/TV: Music.
Guys/Girls: Both.
Green/Blue: Blue.
Pink/Purple: Purple.
Summer/Winter: WINTER!!!
Spring/Fall: Fall.
Night/Day: Depends on the day or night and my mood.
Hangin’ Out/Chillin’: Que?
Dark/Light: Depends on my mood once again.
Laundry/Dishes: Neither.
Christina/Britney: Haha, Britney.
Bizkit/Korn: Wes.
Hairspray/Gel: Hairspray was a good movie.
What do you think of teenage smoking? Stupid.
What do you think of death? I think it is something that I don’t want happening to me for a long long time.
What do you think of suicide? Selfish.
What do you think of abortion? Whatever. I would NEVER do it (at least I hope I will never be put in a situation where I would)…but if others feel they HAVE to…well, whatever. No opinion, really.

Do you
Like sports? Hah.
Play sports? I want to be a sporty kid.
Volunteer? No… :/ I will…one day.
Like little kids? NO.
Like gym? LOL.
Like math? Eh…
Like science? Yeah. Kinda.
Believe your horoscope? Not really.
Believe in God? Hm. I believe something.
Hate Slurpees? WHAT?! NO! I <3 Slurpees! Are you insane?!?
Believe in life after death? Hm…There is a possibility of anything…
Think there is life on other planets? Maybe. Yes. ALIENS…OOooOoh :D
Think mosquitos are annoying? Those bastards.
Write on bathroom walls? LOL. Not on the walls…Uh…lol.

If
You could change one thing about yourself, what would it be? My body.
You could change one thing in the world, what would it be? Unfairness. If that makes sense.
You could go back in time, what would you do? Nothing that would change history…I am not going to screw up humanity twice like that damn Marky Mark did.

Just Whatever
What confuses you the most in life? People. That is why I don’t pay too much attention to them anymore.
What do people do that annoys the hell out of you? Lots of things…
Do you like creamed corn? I like corn. A lot.
Who has the nicest body? What?
Nicest arms? Uh…
Nicest stomach? LOL.
What do people think about you, but isn’t true? LOL. Who gives a FUCK what people think?! What they think, let them think that it is true. Some just want it that way, want things to be true for some reason, you know? Let them think what they want. People are just people anyway. No one is that important to get upset over.
Are you a vegetarian? NOOOOOOO.
Could you ever be? No.
What’s your favorite meal? MEAT.
What’s one thing you want people to remember about you when you’ve died? That I was a nice girl. I am a nice girl…Fuck.
What’s something you want people to say at your funeral? Whatever they want to say…((but nothing inappropriate, you guys, like leaning over, tapping my casket, and whispering HEY MANDY, DID JAFAR? because even though that is horribly funny, my family may not understand the humor in it and get a little mad)).
What’s the most expensive thing you own? My bed? LOL. I don’t know…
Least expensive? My pride and joy 99-cent pumpkin Pez dispenser. :D
Are you a follower? Not really.
Are you a leader? No.
Then what the hell are you? WELL, DON’T FUCKING WORRY ABOUT!!!!

Here is the pdf download.