She’s only 34, but the cancer that started in her tongue is out of control. How can she say goodbye to her children, her fiancee, her mother?
By RACHEL SAUER
The Palm Beach Post
The words are so much harder to understand now, but she says them anyway: Si hay vida, hay esperanza.
If there’s life, there’s hope.
She says them even though her tongue is gone, consumed by cancer. She says them when the pain shoots from her face through her whole body. She says them, and they keep her in the present, keep her from inadvertently drifting toward the past tense when she talks about her life.
It happens sometimes. She says, “Being a mother has been the most beautiful experience.” And the thought: Has been?
But not yet. Dear Lord, not yet. There’s still so much of life, and not enough time. Her children are 11, 9 and 3. She knows the older two drag her illness behind them like a hundred pounds of bricks. She wonders what the youngest will remember.
So Aidee Bernal sits on her couch, hooked to a machine that feeds cans of Ensure and Osmolite through a tube into her stomach, and tries not to let her thoughts drive her crazy. At least three doctors have sighed and shaken their heads and said, “If only . . .” If only they’d met her a year sooner, maybe they could have done something besides manage her pain. Maybe they could have blocked the cancer from spreading through her jaw, up her sinuses, back to her spinal column.
If only she was a legal U.S. resident, maybe she wouldn’t have been turned away by organizations with policies that force them to ask, whose resources are limited so they can’t help everyone. Maybe she wouldn’t have unknowingly squandered that year before finally getting help at the Caridad Health Clinic in Boynton Beach – for many undocumented, and uninsured, Palm Beach County residents, the only alternative to the emergency room.
If only she wasn’t 34 and a mother of three.
For a time, she prayed that God would lift the cancer from her. Now she prays that He will protect her children and fill her heart with peace. On a September morning when the pain was especially bad, she wrote a short prayer in a small Strawberry Shortcake notebook. “Dios mio,” it read, “no me abandones.” My God, don’t abandon me.
Coming to America
Aidee learned faith from her mother, Juana Betancourt. Her parents separated when she was young, so growing up in San Lucas, Michoacan, Mexico, it was just Aidee, her two brothers and her mother.
Her mother owned, and still owns, a small restaurant and religious artifacts store, neither of which made much money. Aidee remembers being poor but happy, raised by a strong woman who acknowledged God in all things.
Aidee helped out in the family businesses, but cultivated her own dreams. She loved cosmetology, loved styling hair and doing makeup, and began studying it in Mexico as a teenager. Her dreams grew beyond her town.
When she was 15, her older brother came to the United States and Aidee wanted to follow him, but her mother refused. So she waited three years, packed a single suitcase and found a ride across the border. She crossed using a friend’s papers and arrived in Los Angeles alone.
Through a friend of a friend, Aidee found a place to live with a woman named Magdalena and her family. Magdalena helped Aidee get a job as a housekeeper for Kim Davis, sister of Kathy Hilton and aunt of Paris and Nicky.
Aidee cleaned house and wilted with homesickness. She missed her mother and her town. She didn’t like cleaning house. She’d never been a servant before. But she was practical: If she wanted to study cosmetology, she needed money.
After three months, she became a nanny for Davis’ children and occasional baby sitter for Paris and Nicky Hilton (Paris Hilton’s publicist did not answer requests for comment). The children, she said, were disrespectful. They wanted to stay up all night. They didn’t obey her. They made her cry.
Still, she stayed with the job for three years. Her photo albums are filled with pictures of trips Aidee made to the mountains, to the beach, to the extravagant homes of famous people with the Davis and Hilton families. But that wasn’t the world to which she aspired. She wanted to work in a beauty salon. She wanted a family.
She met a man and got married, and in 1993 had her son Irving. It was one of the happiest days of her life. He was a mellow baby, he hardly ever cried, and she thanked God for so many blessings. Two and a half years later, daughter Amairany was born, and Aidee’s joy was even more complete. Amairany was the opposite of Irving: smiley where he was serious, outgoing where he was shy, bubbly where he was reserved.
Aidee’s then-husband decided that job opportunities were better in Florida, so he moved to Okeechobee and, when Amairany was 3 months old, sent for his family. Soon after they arrived, though, he left and never came back.
So Aidee was alone with two children. It was tough, and she worried almost constantly about money, but “God never abandoned us,” she said. She got a job directing the tractors in an orange grove, a hard job of long days, and studied cosmetology at night. Day care consumed much of her money.
After several years, and to her great happiness, she got a stylist job at Eve’s Beauty Salon in Okeechobee. That’s where she met Ignacio Martinez, who came in for a haircut. She liked his smile and his laugh, his happy attitude and his work ethic. He liked her strength and her joy for life, how she loved to sing and laugh and dance, and he loved her children.
They became a couple in 1998. She said she doesn’t know what she and the children would have done without him. It was Ignacio who held her hand later that year, when she stopped dieting but kept losing weight, and felt a bump in her tongue, topped by what looked like a cold sore.
Cancer . . . and a short reprieve
Her grandmother and an aunt had died of cancer. Still, Aidee never considered that she would get it. Especially not so young. But as outrageous as cancer sounded, AIDS sounded even more bizarre. That was the first doctor’s diagnosis.
She didn’t believe it and, because she’d bought a small health insurance policy, sought a second opinion. That doctor correctly diagnosed cancer, and just before the year ended, Aidee had surgery at a Delray Beach hospital. Surgeons reported they got all the cancer and that she didn’t need chemotherapy or radiation.
Every year, she went in for a checkup and every year was pronounced cancer-free. In 2000, she had Ignacio’s daughter, Brandy, a happy, sunny baby. Aidee thanked God for the blessing of another healthy child.
The family moved to West Palm Beach, where Ignacio worked in construction, laying underground pipe, and Aidee worked from home – making and selling photo albums and selling shoes.
In early 2002, she started having headaches and sore throats. But this time, she couldn’t rush to the doctor because she had no insurance. She suspected the cancer had returned and sought help at some area healthcare agencies. And was told politely – regretfully – no, because she wasn’t a legal U.S. resident, because she was uninsured, because she couldn’t pay.
She knows she should have tried harder to get legal residency. She knows it was risky coming to a country without a visa, where her only option was to stay healthy. But she got lost in the paperwork and the bureaucracy, she said, and she never expected to get sick.
From hospital to Hospice
Finally, after a year of bouncing between no’s, Aidee found out about the Caridad Health Clinic and got a free examination from a volunteer doctor. The cancer had returned, and she was scared, painfully aware of what could go wrong, what she had to lose. Caridad volunteers scrambled to arrange free chemotherapy and radiation treatment at Boca Raton Community Hospital.
Dr. Albert Begas, a Boca Raton oncologist and Caridad volunteer, began working with her. He never liked what he saw, didn’t like how far the cancer had progressed. He referred her to Hospice of Palm Beach County, where a team of caregivers made the uncommon decision to take on a patient who wasn’t, at that point, terminal. They took her on in June, and to this day have provided free treatment from a fund earmarked for charity care.
The goal, said Dr. Faustino Gonzalez, associate medical director for Hospice, was to get her healthy enough so she could be discharged from Hospice care. That didn’t happen – she was discharged only when she had to be hospitalized.
She began chemotherapy in August 2003 and radiation in December 2003, finishing her treatments in June. She lost her thick black hair, she lost her energy. She spent days in bed. Her children were scared. She was so sick that she had to be hospitalized several times.
And the cancer didn’t stop growing.
Caridad caregivers helped Aidee’s mother get a humanitarian visa, and she arrived from Mexico in January to take care of Aidee and the children. Catholic Charities Legal Services helped get the visa extended in October. Ignacio continued working long hours, paying the bills, worrying.
And Aidee kept getting worse.
Gonzalez suggested surgery as a possibility, but all treatment was contingent on finding doctors and hospitals willing to provide free care. Perhaps the University of Miami could do the surgery, he said, but that wasn’t even a consideration until Aidee paid an outstanding (and still unpaid) $1,238 bill from a December 2003 emergency-room visit.
Still the cancer grew.
‘A no-win situation’
By September, Aidee was too weak to leave the apartment for anything except her doctor appointments. She began spending her days, when she felt well enough, on a couch in the living room, making scrapbooks, embroidering, coloring whimsical pictures with a rainbow of pencils. Her mother bustled in the kitchen and through the rest of the little home, cooking, cleaning, organizing – things Aidee once loved doing.
From her comfortable brown couch, Aidee watched how her illness affected her children. Brandy was too young to know, but Irving – quiet and reserved by nature – withdrew further into himself. Amairany, who’s cheerful and happy and loves to dance, had trouble in school. Aidee knew they were confused, that the weight of her illness was a crushing load on their small backs.
They made hesitant steps toward acknowledging the cancer. In August, Amairany began a story, “When my mom gets better . . .” By October it was, “If my mom gets better . . .”
When they caught her eye, she shook off her morphine haze and smiled wide.
Dr. Gonzalez and Hospice nurse Elena Torriente became familiar in the home, trusted and steady and kind. Torriente taught Aidee’s mother how to administer the morphine and antibiotics, how to fill the bag with liquid nutrition flowing through a port in Aidee’s abdomen. It had been months since Aidee had eaten one of her mother’s dinners; her tongue was almost gone, and her mouth was too sore to open.
Gonzalez told them about tumor necrosis factor, the body’s desperate attempt to kill the tumor. As host of the tumor, the body itself is under siege, too. By giving Aidee intravenous nutrition, he said, the tumor necrosis factor is thwarted. She gains weight, but the tumor has more to feed on.
“It’s a no-win situation,” he said.
Still, Begas and the Hospice caregivers tried. Gonzalez set up an Oct. 26 appointment for Aidee to see Dr. Ellis Webster, an ear, nose and throat specialist. Both doctor and patient hoped Webster might believe surgery was a possibility.
Unspoken, but on everyone’s mind, was the lost year, the year that could have made a difference, the year when the cancer might have been stopped.
A mother’s pain
Gonzalez’s last home visit before Aidee’s appointment with Webster – an appointment Webster agreed to do for free – was not good. He softly felt her face, then put on his glasses and removed the bandage from her left cheek. What had previously been two smaller holes through her cheek at her jaw line had merged into one silver dollar-sized hole.
He carefully replaced the bandage, sighed deeply and rubbed his misty eyes. It didn’t look good, he told her, but “vamos a tener fe” – we will have faith. They would wait to see what Webster said about the possibility of surgery.
Her mother stood behind the couch, listening over Aidee’s shoulder. She began to weep. She came around and sat by Gonzalez, weeping harder.
“El dolor de mi corazon,” she told him, the pain in my heart. Her mother died of cancer, and now . . .
She gestured to heaven. She had been praying so hard, every night on her knees, begging God to come down and take the cancer from Aidee. She pleaded for Jesus, with his precious blood, to cure Aidee. She prayed the Virgin would heal Aidee through the holy water a friend had brought from Mexico.
Fat tears slid silently down Aidee’s swollen cheeks as she bowed her head and rubbed her temples. Her mother continued telling Gonzalez about how hard she prayed: “Pon tu mano en mi hija, Señor, ten compasion. Es mi hija. Es mi hija.” Place your hand on my daughter, God, have compassion. She’s my daughter. She’s my daughter.
Gonzalez nodded sadly, and asked Juana to come outside with him. Standing on the patio, he gently told her he understood the fierceness of a mother’s love, that as a father he could sympathize with the desperation she felt. But, he added, she couldn’t break down like that again in front of Aidee. It’s too much for her. When Juana needed to cry, she can cry on his shoulder, he said, but it’s too hard on Aidee.
‘Please help me’
Aidee arrived for her appointment with Dr. Webster in a We Care van, alone because her mother was with the children and Ignacio was working. In the waiting room she crossed her thin legs – revealing a temporary tribal-design tattoo on her ankle that Amairany and Brandy had adorned her with – and silently read a small, laminated card printed with the Lord’s Prayer.
Half an hour after she arrived, a nurse led her into an examining room. With medical assistant Angela Aravena translating, Aidee gave Webster a brief history of her cancer. He asked questions – Did you smoke before the cancer? No. Did anyone else in your family have this type of cancer? No. – as he snapped on a pair of latex gloves.
“Bad genes when they’re this young, you know?” he said.
He carefully removed the white bandage from her left cheek. The hole on her jaw line gaped wide, red-rimmed and raw.
“Try to open for me,” he instructed, and she separated her teeth half an inch. “I know it’s tough.”
He softly pulled on her bottom teeth with an index finger, and the entire bone moved.
“These teeth are shaky, so this whole mandible is gone,” he said. He peered into her mouth with a small light. “The tongue is gone.” Her breathing had become raspy and ragged.
“You’ve got a lot of pain?” he asked, and she closed her eyes and nodded slowly.
He paused, then told her the cancer extended through her jaw and back to her spinal column. Next, it would close her throat, then attack her brain or liver.
Aidee nodded again, a small line appearing between her eyebrows.
“My feeling is that even if a CT scan shows you don’t have cancer anywhere else, this would be really hard to remove,” he said. “It’s three-quarters of your face that’s going to be gone.”
Her face would have to be reconstructed with bone from her hip and muscles from her abdomen, “and that’s probably 24 hours of surgery right there. I don’t know anybody around here who does that kind of surgery.”
Because Aravena had a hard time understanding her, Aidee wrote her next request: Please, doctor, I have three children. Please help me get this surgery.
He shook his head. “This extends all the way to the back of your neck,” he said. “You’re young, and you want to have every opportunity, I know, but this would require a major operation that you wouldn’t get very much from. We’d never be able to clear the margins. Even if they got 95 percent of the cancer, the 5 percent that was left would still kill you.”
“Please, doctor,” Aidee wrote again, “help me get this surgery.”
“There’s no way we can get rid of all the cancer,” Webster repeated. “It’s not going to do any good. If I felt that you’d have less pain and a longer life to be with your kids, then I would recommend it. But we can’t get all the cancer out.”
Her face crumpled. She stared dully at a point on the floor.
“Do you understand?” he asked gently.
She gave a small, jerky nod.
“Maybe two years ago, it was a different story,” he said. “But where it is right now, it’s not salvageable.”
He recommended that she get a tracheotomy soon, before the cancer chokes her windpipe, then “live out the rest of the time that God has given you.”
Outside, she waited on the sidewalk for the We Care van to take her home, tiny and bruised. She clutched her arms around herself and gazed at the ground. Now she had to go home and tell her mother and Ignacio that their final, desperate hope was gone. And what to tell her children? Maybe nothing, yet.
The burden was almost unbearable.
Praying for peace
Now, it’s a matter of waiting.
Dr. Gonzalez and the Hospice team are discussing whether to try localized radiation treatments, which may or may not give her more time. They’re weighing the potential cost to Aidee’s quality of life.
So, in the absence of big, sweeping measures, they fill in the spaces with smaller, sweeter gestures. Gonzalez is getting Aidee an appointment with his hairdresser. He knows how beautiful Aidee was before all this and that she’s self-conscious now about her looks, about the bandages, about the sweet, rotting smell of the dying skin in her cheek. It’s something immediate and helpful he can do.
“I’m heartbroken,” Gonzalez said. “She’s a woman who could have been helped. Not being able to do anything, and knowing what could have been done, is devastating.”
Torriente visits several times a week and calls Aidee mami, a term of endearment.
Aidee’s mother cleans harder, cooks more, can’t sit still or she’ll start to cry. The children go to school and come home, and do their homework, which Aidee checks over. She looks at them with enduring love and deep sadness, struggling to keep her capuccino-colored eyes from drifting closed. She and Ignacio, her fiance but not husband, tiptoe around the practicalities of his being a single father.
Sometimes, the pain is so bad.
Still, there are moments that hint at the old days, when Aidee and the kids spent afternoons at the park and laughed until their stomachs ached. On Halloween, Aidee curled Amairany’s, Brandy’s and her mother’s hair, then pulled out her seldom-used bags of makeup to turn Amairany and Irving into vampires and Brandy into a princess.
She leaned back to admire her handiwork, smiling and giving them hugs.
In the next days and weeks, Hospice will send bereavement counselors to the small home. There are certain inevitabilities, certain truths that must be discussed. Nobody wants to say it out loud yet.
And so the little family prays for mercy, prays for grace, prays for peace.
Si hay vida, hay esperanza.
If there’s life, there’s hope.