Better Off Bald

As for me, time moved forward, but I couldn't move on. Part of me died with Adrienne, leaving a void so vast that nothing will ever be able to fill it. For years, I tried to relieve my grief.

“Look, if you insist on mentioning our mother, you might as well not write the damn thing at all. My sister wouldn't have wanted that. Don't you get it? Our mother lost custody! She's doesn't deserve to be listed as a surviving relative; she's not even invited to the funeral.”

Cancer adds to the story of my individual life; it adds to my unique character and sense of humor. John, in my eyes, has never seemed more like a father, and Sissy has never seemed untrapped and free from time and stress. I know that she's stressed right now, I can see it hiding beneath her smile, but her soul and spirit have never seemed so bright to me before.

“We are taking Adrienne home. She wouldn't want to be here. I understand the risks. You can't talk me out of it, so don't try. Now let's do what needs to be done and get her home as soon as possible.”= Without flinching, Casey nods and says, “Okay.” Later, she tells me upon that first impression, her nickname for me was “Andrea Don't-fuck-with-my-family Wilson.”

Adrienne pops up like a jack-in-the-box. Her shrieks are coherent despite the mask. Thrashing her thin arms in mid-air, she pushes doctors and nurses away as they grab her limbs. She spots John and me. “SISSSYYY! STOP. MAKE—STOP,” she yells. Oh my god! What have they done?

Adrienne is angry because her doctor is giving up on her. I remember Dr. Aquino's email to Kirsten, which she forwarded to me. His last words were I'm sorry I can't offer her much help. If I were Adrienne lying in that bed, listening to him, I would have said fuck off too. We are fighters and if Dr. Aquino wants to give up, we'll find another ally.

You … don't know my sister or our family. Well, let me tell you something. We don't believe in numbers so there's your prognosis. As far as doing her work, ask her teachers. She is more than capable. School is one of the few things that gives her pleasure now. It brings some normality back into her life. She wants to do the work she would be doing if she could attend school. She doesn't want to be babied. Why are you punishing an honor student? You don't have the funds? Tough shit. Find them! It's the law.”

Adrienne's career list 2000 – present: +Professor of religion +Zoologist +Forensic psychologist +Full-time artist—painter (gallery) or digital art +Webcam star +Fashion designer +Computer programmer +Studio musician

am asking for an immediate 504 Hearing (504 being the section of the Rehabilitation Act that covers educational programs). Schools must make reasonable (five hours is not reasonable) accommodations to ensure full, meaningful access to educational programs for eligible, handicapped persons. As a cancer patient, Adrienne is protected under the Rehabilitation Act. I expect this hearing to occur as soon as possible. Adrienne deserves the same education as her peers; she should not be punished for having cancer.

For half a second, my heart soars like a young bird finding its wings, taking its first flight, racing through the air. Then I look into his eyes, and my brain connects the words to the look on his face. My heart stops, forgetting to flap its wing, and falls to the ground, landing with a loud THUMP. There's been a change. Those words were supposed to be good. I've waited so long for a change … I guess I wasn't specific enough in my wish.

“Wow. It looks great. How bold,” he says as he gestures toward her head. “I love that you shaved your head. What made you decide to do it?” Adrienne looks the bus boy in the eye. “I have cancer.”

Today was honestly one of the best days of my life. I cannot describe in words how incredible of a person you are. I have never before met someone who was so wise, down to earth, intelligent, talented, and humorous. Throughout most of my childhood, you were that one string of hope that held me together after years of abuse from my mother. I do feel strange telling you that to me you are a dear friend.

Still flushed with excitement, Adrienne greets him by exclaiming in a singsong voice. “DAVE Navarro KNOWS who I am! DAVE Navarro KNOWS who I am!” Not missing a beat, Dr. Fenn mimics her tone. “WHO is DAVE Navarro?” Adrienne bursts into giggles and explains the phone call, her wish, and meeting Dave Navarro.

Until I see a drop of water fall on the keyboard, I don't even realize I am crying. I touch my face. it is soaked. As the printer churns out each page, each person who had stage IV liver cancer and survived, I weep. Hope floods back into my body, and I welcome it because I need it the way our mother needs her drugs, the way some people need a god. I feel reborn as the papers pile up in the printer feeder; my faith restored by UFT, a miracle drug doctors cannot yet explain.

I kinda brought this upon myself. A lot of stuff happened in my early youth, and I repressed it for years and I think that's what caused it (cancer) for some reason. I just have a gut feeling about it. I've been going through a breakdown now, because I'm trying to let go of everything that happened and forgive the people that caused it. I don't think the chemo is doing its job; so I'm turning to anything I can to start healing.

Who will go with me to the Topanga Canyon haunted house on Halloween? Who will stain the entire bathroom blue with hair dye? Who will argue with me I have seen that episode of Law & Order when I think I haven't, but she is always right? Who will ask me to proofread her paper so “it's perfect because I need a 4.0 to get into a good college”? Who will insist I watch the USC vs. UCLA football game with her because “you should have school spirit” even though we don't like the sport? Who will test me on music I don't even listen to and expect me to know all of the answers and then roll her eyes when I don't?

When Adrienne exits her bedroom, I gasp. She appears … so ethereal with her blue Monarch butterfly wings and blue bobbed wig Marilyn bought for her. I'm looking at a blue fairy from another world. Adrienne is also wearing her brand new blue tie-dyed shirt from Ross along with a blue scarf tied around her neck. On another person, so many shades of blue would be overwhelming, but Adrienne manages to pull off the monochromatic style.

I picture us sitting in a car at an intersection in the middle of the night. The world feels empty like right after a storm ends. The darkness presses down on us, and we see only a red stoplight blinking: on, off, on, off, on, off. We can't turn the car around and go back where we were, but we can't seem to move forward either. The red light taunts us: stop, go, stop, go, stop, go. But we remain stuck. I crack the window for fresh air.

Adrienne has the pleasure of meeting Nurse Bitchy before I do. I step out to use the restroom down the hall since parents are not allowed to use the one in the patient's room. During the five minutes I am gone, Nurse Bitchy walks into Adrienne's room and takes away her oxygen mask.

Like the California wildfires, there are so many hot spots in Adrienne's body right now; the doctors don't know which one should be treated first. They are focused on what happened over the weekend, and now there's the orange pee, the funky rash, and the constant nausea.

Dancing has a hidden factor that I cannot describe in words, that hits a nerve and just lets everything flow within me. It is almost as if I am cured from something when I am dancing, but I am not quite sure what I have been cured of once I stop.

Adrienne laughs. “You mean I can take pot — legally?” “That's what I'm recommending,” says Dr. Marco. I don't know how to respond. “You said smoking it was better … but I wouldn't even know where to get it.” Adrienne laughs harder and says, “I can think of a few people.”

I can't look at Adrienne as I read the final line. “Two-Year Survival: Less than five percent.” My throat constricts as I swallow the lump in it. I feel water rushing to my eyes as I bite the dry skin off my lip. I look at Adrienne. “Well, it didn't say zero percent. I'll just be one of the less than five percent who survive.” Adrienne smiles at me.

Adrienne and I decided to explore an old house in the town, ignoring the signs that read, “Don't go beyond this point. Rattlesnake area.” My father became agitated. “Girls, didn't you read the sign?” “We'll be fine dad,” I said. John threw his hands up in the air and stormed away. “They play by their own rules,” he said to my father.

I will be reborn. I will fight this, pills and all, and it will not kill me. I will be drop dead gorgeous—even if I don't have hair. I will help people who have to go through this. I will be amazing and impossible to avoid. ALL OF THIS SHIT IS TEMPORARY, PAIN IS NOT REAL, CANCER DOES NOT SURVIVE IN ME.

For the first time in my life, I sleep well for nights at a time. I don't remember my dreams anymore, which used to wake me up in the middle of the night or leave me feeling tired the next day. My insomnia started in childhood along with the vivid dreams. Mental fatigue, however, proves to be more powerful than my creative subconscious. I've never felt more rested and more exhausted at the same time.

“Bring Mr. Navarro out to the stage because a young lady would like to meet him.” I didn't think it was possible for Adrienne's smile to get any bigger, but I swear I can see her back molars now. I silently thank Jay for making Adrienne's dream come true.

I tell the nurse, “To my recollection, Adrienne was never given more than six milligrams of Dilaudid every four hours as a continuous drip except when she pushed the PCA for acute episodes of pain.” I speak these words, this medical mumbo jumbo, without thinking. I am one of them now, only without the degree. I hate it.

“No,” he says, “there is no change.” The words hang in the air before falling fast to the ground. No change, which is better than a bad change, but not as good, as “the tumors are smaller now” or “the dots have disappeared from her lungs” or “it's a miracle.” No change beats me up, and then walks away as if nothing has happened.

I have no job. Yet, I have never worked harder in my life. Tears are always near the surface, but an inner core of strength sucks them back down. Things are not looking up. I cannot face what rock bottom will be this time. I lose myself in research: searching for a clinical trial or herbal medicine that will eradicate the tumors, but somewhere deep inside, a part of me knows the truth.

When Dr. Hale placed Adrienne in my arms for the first time, I didn't care that she had a big forehead, squishy eyes, and flushed skin covered in dried, yellow crusty stuff. I felt this rush of love jettison through my entire being, so powerful I thought it could knock people down. I would do anything for this kid.

There are dry goods, which have a long shelf life, but there are also rotting bananas, old apples, day-old muffins, and a cake that expired a week ago. Even as I thank them, I vow not to return. Cancer has consumed Adrienne's liver, her lungs, and now our lives, but I refuse to let it take our self-respect.

“Cancer gave me cheekbones and an excuse to wear a strawberry wig. I get to spend time with my family, which was really rare before this. I'm getting a new bed when I get home. All things positive and light have resulted from the tiny bulbs that have decided to live on my liver and lungs.”

“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? One more thing, don't ever threaten me again.”

Adrienne looks at the four of us with a determined gleam. “I'd rather be dead than deaf.” I want to strangle her. She would rather be dead than deaf?

So instead of praying for the cancer to go away, I pray for something more realistic. Please god, if you are out there, please let it be ovarian cancer. Adrienne can live without her ovaries, but not her liver. Women survive ovarian cancer.

I have never heard of liver cancer before. Cirrhosis, yes, too much alcohol causes liver damage. What did he say? H something. Cellular is the second word. Need the fog sucked out of my head. Can't think.

In my head, I stop speaking. This is the first time I've said the ‘C' word aloud and I say it to this angry, horrible woman whose child, I'm sure, is perfectly healthy.

Working in an ER is supposed to consist of broken bones, chest pains, deep cuts, maybe an occasional gunshot wound. I believe he has never given this kind of news before. Dr. Lin glances at Adrienne, but then turns to me. “She has tumors in her liver and lungs.”

Better Off Bald chronicles my sister Adrienne's 147-day battle with liver cancer; the book also shows how I reared Adrienne from the time she was eight until she died at the age of fifteen. While I narrate the story in present tense, I use flashbacks to explain how I gained custody of Adrienne from our mother, how our relationship evolved over time, and how we displayed our unconditional love for each other. Adrienne's courageous spirit is revealed as she squeezes more life in 147 days than most people do in a lifetime. From meeting Jay Leno to spending the day with Dave Navarro of Jane's Addiction, Adrienne makes every moment count. As she lay dying, my younger sister Adrienne taught me how to live.