TO LIVE AND DIE IN SCOTTSDALE
Lying in her bed last April, frail and small, Yvonne Camenos knew she had only weeks to live. Yet she was not embittered. She seemed content in the knowledge that she had fought for as long as she could. So as her mind replayed her struggle against ovarian cancer, she chose to dwell not on the suffering, but on the rewards that can come from confronting one's mortality.
"Actually, I thought the cancer would get me sooner or later," she said matter-of-factly. "But I saw my situation as an opportunity to experience things through a different light, to see my kids through this."
She recalled awaking at a Scottsdale hospital after exploratory surgery on June 28, 1991.
"Am I dead?" she asked.
She had been assured that she still was among the living.
But the surgery had uncovered an advanced form of ovarian cancer, one of the most lethal of malignancies. The doctors expected Yvonne to die within three months.
She steeled herself for a fight that many anticipated would be torturous and short.
It wasn't short. It lasted four years.
Yvonne finally died at her home on June 9, 1995. She was 53.
This story describes how the Scottsdale mother of four lived those four years. She endured unspeakable pain. And she was compelled to do protracted battle with her health insurance company.
But there's much more. Through it all, Yvonne's character and spirit moved all with whom she came into contact. In dying, she was full of life.
"We all have to deal with death eventually," Yvonne said from her bed in April, days after deciding to let her cancer run its course. "For a while, I put my life in the hands of God and my doctor. Now I'm in God's hands."
Yvonne Camenos often joked that she and her husband, Jim, were joined at the hip. On the surface, however, they fairly could be called opposites.
Yvonne was outgoing, an instant confidante. She was the parent in whom her children confided--occasionally, once they were of age, over shots of tequila. Jim was more comfortable tinkering with his computers or talking national politics than in intimate human discourse.
Yvonne was a devout Catholic whose faith deepened after she became ill. Jim was an agnostic who didn't believe any god would subject his wife to such a demise.
She adored Billy Joel and James Taylor. He preferred classical music.
She loved to spend hours in her bright, bustling kitchen--the epicenter of her home. He cherished the solitude of his study, where he could chat by computer with his cyberpals.
But the couple shared a devotion to family, work and each other that dwarfed those differences during a 28-year marriage.
The Camenoses worked together for years at their small computer-oriented businesses, in Illinois, in California and, finally, in Scottsdale.
They also played together. Jim is a skilled photographer, and Yvonne--blessed with classical looks and a natural elegance--was his prized subject.
Together, they dreamed of visiting faraway places in their later years.
"Until the end," Jim says, "for whatever incompatibilities we had, we made each other happy. That's what it's all about."
Yvonne, the fourth of Jenny and Louie Contreras' five children, was an admitted hell-raiser as a teenager in Riverside, California. "If there was a party, I'd find it," she recalled.
But she worked as hard as she partied. She held a variety of jobs in Riverside after high school, finally settling in at a large brokerage firm.
It was through that job that she met her future husband. A New York City native, Jim Camenos was working as a computer programmer out of the firm's home office on Wall Street.
The pair were in their late 20s. Jim was a bachelor. Yvonne was a single mother with a young daughter, Jennifer.
The two struck up a friendship over the phone, chatting several times before they agreed to exchange photos. Jim was captivated by Yvonne's Castilian features and winsome smile. Yvonne found Jim handsome, but what really won her over was his sincerity and intelligence.
They met in person and were convinced they were meant for each other. They were married in 1968. Within a decade, the Camenoses were a clan of six--Jim, Yvonne, Jennifer, Pauline, Kristina and James.
Jim's jobs took him from New York to California, then to Illinois. He was paid well, but longed to be his own boss. He took the leap in 1978, starting his own computer business.
After a few years, Yvonne took over the company's books, juggling job and motherhood. But being a mom was her first priority.
"There wasn't anything I couldn't tell her," says daughter Kristina, whose effervescence is reminiscent of Yvonne's. "We were always open with each other. I appreciated her every day."
Business in Illinois was adequate, but the lure of Arizona proved to be too much. In 1985, Jim and Yvonne moved to Scottsdale and opened a computer-based business, Postal Discounts and Marketing Services. It caters to companies that do direct-mail advertising.
The Camenoses shopped for group health insurance, using a Phoenix agency, Brokers America, as a middleman. Its general agent recommended Central Reserve Life Insurance, an Ohio-based firm that provides coverage to small businesses in 17 states.
The premium was steep, about $1,000 a month by the early 1990s for Jim and Yvonne alone. But they believed they needed the security, including the $1 million in benefits Central Reserve promised in case of catastrophic illness. (The company increased the ceiling to $2 million in 1993.)
"We completely bought into their pitch--'Unlimited lifetime benefits,'" Jim Camenos says. "It sounded right. Apparently, we were naive."
In early 1991, Yvonne Camenos developed sharp pains and swelling in her abdomen. Her doctor performed an ultrasound and a pelvic exam, which revealed--in medical parlance--"suspicious areas."
That led to the discovery of ovarian cancer and Yvonne's dim prognosis.
The news traumatized her family.
"I went off by myself and I screamed, 'Why her? Why?'" says daughter Pauline. "But I had to stop asking why real fast. I knew if I wasn't strong, I would be of no use to her."
Making Yvonne as comfortable as possible in what seemed to be her final days was a viable option. But Jim Camenos wouldn't let her slip away.
He called the Mayo Clinic and demanded to consult with a cancer specialist.
"Yvonne was in pretty bad shape when I first met her," says Mayo oncologist Dr. John Camoriano. "But she must have a stamp in her brain that says, 'No whining allowed.' Lots of people start whining immediately about their disease. When things get really bad, there's no fight left. Yvonne had a ton of fight left in her, so I suggested the most modern and aggressive approach I've ever given a patient."
Camoriano knew there are no easy victories in oncology. He impressed that cruel fact upon his new patient.
"When you have to face that you're going to die, it's like getting hit," Yvonne said. "Without making any promises, Dr. C told me he wouldn't give up if I didn't. He was wearing a halo. I started telling myself that if God gave me a little more time, I might be able to do some good."
Yvonne began an intense outpatient chemotherapy program through Mayo. There is no cure for ovarian cancer, but chemo can shrink or retard malignant tumors and extend a patient's life--sometimes for years.
Chemotherapy is a wretched mode of survival. Descriptions of fever, nausea, vomiting, loss of appetite and hair loss barely do it justice.
"It's strange," Yvonne said, "to have to rely on a form of poison to keep you one step ahead of death. It's funny to hate something that can help you, but you do."
Yvonne's daughters, who were living in Southern California, decided one of them needed to be with their mother full-time. Middle daughter Pauline was the most footloose, and she moved back to Scottsdale.
"Mom would be in bed after chemo because everything hurt," she says. "I'd crawl into bed with her, hold her hand and not move or say much for hours. She'd groan and then I'd groan. She was sick, but I'd be the one who would have to vomit. Some nurse, huh? One time I told her I'd shave my head so I'd look just like her. She said, 'Don't do it, hon. You won't look half as good as me bald.'"
Yvonne regained strength between chemo treatments. At times she felt well enough to cook in her beloved kitchen. Whenever possible, she personally delivered homemade pastries to Mayo Clinic staffers and inpatients, walking from room to room to offer encouragement.
She also resumed bookkeeping for the family business.
A February 1992 exam revealed no new tumors inside Yvonne. There was hope.
To an ovarian-cancer patient, nothing is more significant than a CA-125 blood-serum test. A low score is heavenly, because it may signify remission; a marked increase often means the worst.
Yvonne Camenos' CA-125 tests remained stable until early 1993, when her count shot up dangerously. That led to surgery that March, which revealed new malignant tumors. Surgeons removed the malignancies, which apparently hadn't spread to Yvonne's vital organs.
Dr. Camoriano suggested a new form of chemotherapy called Taxol, which is made from the bark of a tree. The thought of more chemo chilled Yvonne. But she knew her only other choice was death.
The Taxol worked wonders, at least temporarily. Though the drug made Yvonne violently ill, her CA-125 count returned to the safe zone for several months. But Camoriano feared it was a matter of time before the cancer struck again.
"At some point, either the disease is going to be cured or it isn't," he says. "That's why I recommended that Yvonne give the City of Hope and a bone marrow transplant a shot."
The City of Hope Medical Center was founded in 1928 as a charitable hospital for tuberculosis patients. The Duarte, California, center now specializes in marrow transplants. In May 1993, Camoriano contacted the City of Hope on Yvonne Camenos' behalf.
Bone marrow transplantation begins when doctors remove and store some of a patient's bone marrow. They do so because the toxic doses of chemotherapy that follow would kill the marrow, which houses infection-fighting blood cells.
Once marrow has been extracted and stored, a patient undergoes about a week of relentless, maximum-dosage chemo. Doctors then transplant the bone marrow, which refuels the autoimmune and clotting systems.
The chemotherapy is so potent that nearly one out of ten Americans dies during the treatment. But for those in alternating periods of cancer remission and recurrence, the risk often is worth it.
"I was told that this might cure me--the uncurable one--once and for all," Yvonne said. "That was the best music I've ever heard. My question was, would our insurance company pay for it?"
The answer was a resounding no.
Central Reserve had paid Yvonne's medical bills--more than $25,000--without a significant glitch in 1991-92. But the insurer balked in July 1993 after a City of Hope doctor indicated Yvonne's lone hope was a marrow transplant.
"We have been advised," Central Reserve Life's Leslie J. Moore wrote, "that the use of high-dose chemotherapy with . . . bone marrow transplant for the treatment of ovarian cancer is considered experimental in nature."
Insurance companies pay for traditional chemotherapy without blinking an eye. But marrow transplantation is very expensive, about $225,000 in Yvonne's case.
"The jury is still out on [marrow transplants]," says John Cova, a consultant for the Health Insurance Association of America. "It does a disservice to the individuals who are covered because they receive unproven treatment."
Bone marrow transplants are no panacea. But Cova should try telling that to the thousands whose lives have been extended by successful treatments.
The procedure has entered the health-care mainstream, and many insurers have become hesitant about fighting marrow transplant issues in court.
A turning point came in 1992, when a California jury awarded $89 million to the family of a breast-cancer victim whose insurer had refused to pay for a marrow transplant. A scanning of similar cases indicates the dollar amount in the California case was extraordinary, but not the verdict.
"Bone marrow transplants are not much of an issue anymore," says Gary Tysch, an attorney for the City of Hope. "But that apparently hasn't kicked in with some companies, such as Central Life. They think that just by calling something, quote, experimental, that they can avoid their responsibilities."
Yvonne Camenos in the summer of 1993 resolved to go to the City of Hope, with or without her insurer's authorization.
"It's like a computer told Central Life, 'That woman should be dead by now,'" she said. "But, surprise, surprise, I'm still here. They force you to tell them, 'Go screw yourselves. I'm going to the City if they'll have me.'"
The City of Hope's plan in situations such as Yvonne's is simple: In August 1993, the staff welcomed her with open arms.
"A person who is battling cancer should not have to battle the insurance company, too," Tysch says. "Our position is, we treat the patient no matter what the insurance company says. My job is to go after the insurance company to pay up afterward."
(A City of Hope lawsuit against Central Reserve is pending in Phoenix. In court papers, attorneys for Central Reserve claim Yvonne's transplant "was not necessary to the care and treatment of her illness. . . . Her treatment was not a generally accepted medical practice in the U.S. for her illness.")
Doctors at the City of Hope removed and stored Yvonne's bone marrow as scheduled. Then came agonizing days of chemotherapy.
"They tell you they're going to take you to the edge of death and back," she said, "and they aren't kidding. You do want to die a lot of the time, but you just don't."
Actually, Yvonne did almost die of complications during her treatments. Because of the extent of her prior chemotherapy, she lacked an adequate amount of bone marrow. Two siblings and her daughter Jennifer donated lifesaving blood platelets.
Slowly, Yvonne edged back to life.
Yvonne's neighbor at the City of Hope was a breast-cancer patient named Hattie Anderson. The Cerritos, California, woman says she was awed at Yvonne's attitude.
"She picked up the spirits of everyone on our unit," says Anderson, whose cancer is in remission. "She'd tell someone, 'Hey, you, don't be afraid. You're alive and you're gonna get better.' And she was about the sickest of all of us. I would go into her room and rub her feet to try to ease her pain. She just got into my heart and stayed there."
Yvonne wanted to go home after more than a month at the City of Hope. The hospital discharged her in early October 1993. No one knew if the transplant would work, but Jim Camenos expressed the couple's thanks in a letter.
"If there is a place called heaven," he wrote the nurses and staff of the City of Hope's Unit 6, "then surely you each have a spot reserved in your name, as you are all truly angels."
But the angels could not work a miracle for Yvonne Camenos. She expected the worst after a bad CA-125 test in early 1994. A fourth cancer surgery confirmed her suspicions.
"I knew I could only take so much," she said. "They told me my tumors were back and--this time--I had less than a year left. But I didn't think my kids were quite ready to be without me. So I didn't give in."
Those closest to Yvonne could not fathom how she was coping.
"It was hard to get inside her head and know what she was really thinking," says daughter Pauline, who again returned home over her mother's objections.
"I can see her in the kitchen, waving her spatula, bald, saying, 'It's my cancer, and I'll deal with it my way.' My father was there for her, and us kids, too. But she also was alone, and that made me cry." As Yvonne hung on, she had more to think about than her cancer.
"Central Life decided to stop paying a lot of my bills," she explained. "We couldn't get them to say why, other than the costs were in excess of 'reasonable and customary' charges, whatever that means."
Yvonne's medical bills confirm her account. In 1994 alone, for example, Central Reserve failed to pay the Mayo Clinic and Scottsdale Memorial Hospital-North more than $14,000 in new bills.
The Camenoses tried to sort things out in letters and phone calls. But they couldn't get a specific response from Central Reserve's claims department.
Finally, the insurer sent Jim and Yvonne a form letter that stated its position. Without giving specifics, Central Reserve claimed that Mayo Clinic's charges for Yvonne's outpatient care were "unreasonable."
It signed its correspondence, "Sincerely, Your Team #1 Customer Service Representatives."
Doctors are loath to involve themselves in patient/insurer imbroglios. But John Camoriano in 1994 was moved to compose a "To Whom It May Concern" letter about the situation.
"Following [Yvonne's] transplant treatment in September 1993," he noted, "it appeared that her insurance company had a significant change in its behavior. Apparently, they have made efforts to deny her coverage and reduce her coverage. . . . We will continue to treat this patient in the manner we feel is most appropriate for her condition."
As an example, the doctor noted that Central Reserve was not paying for Yvonne's prescription of Neupogen, the drug that prevents infections always lurking in chemotherapy patients.
Without the Neupogen, Camoriano pointed out, Yvonne likely would face expensive treatment because of infection. One or two hospitalizations would exceed the cost of months of Neupogen supplies, he wrote.
The Camenoses sought help on other fronts. Jim wrote to several elected officials, including Senator John McCain and then-congresswoman Karan English. The politicians did nothing.
"Unfortunately," McCain responded on February 24, 1994, "your situation is in the jurisdiction of Central Reserve. Therefore, I have forwarded your letter to [company chairman and CEO] Mr. Fred Lick Jr. Jim, I do hope your situation can be resolved favorably."
It wasn't. On May 11, 1994, Jim Camenos opened a stunning letter from Central Reserve. The company announced it was canceling its coverage in three weeks:
"The insurance contract covering your group requires you to maintain coverage on 75 percent of your total eligible employees for insurance to continue. Our records indicate that your group no longer complies with this provision. Since you have not responded to our letter of April 7, your coverage will terminate on June 1, 1994."
The letter floored Jim and Yvonne. They insisted they'd never received the April 7 letter. Moreover, the insurance company was flat wrong about the 75 percent figure. The family business at the time had just three employees, Jim, Yvonne and a secretary. Each was covered by Central Reserve.
Jim sent an overnight letter in response that included documentation about his work force.
A few days passed without response from Central Reserve. Desperate, Jim contacted the state Department of Insurance.
A state investigator, S.O. Yaffi, called Central Reserve--and got through to someone. Central Reserve said it had reinstated the Camenoses' group policy.
But nobody from the insurance company had bothered to tell Jim and Yvonne. They accepted the information gladly, but warily, and with good reason.
The roller-coaster ride with Central Reserve continued. Some months, the insurer paid for Yvonne's care; other months, it again deemed similar treatments "unreasonable."
When she was up to it, Yvonne tried to concentrate on bookkeeping for Jim. She tried to lose herself in her favorite television shows on PBS and the A&E network. She prayed.
But the insurance woes threatened to consume her.
"This insurance stuff is really upsetting and scary," she said last October. "They've reinstated us, but they aren't paying all the bills. I have to continue the treatments to stay alive. And there's no end in sight."
Yvonne took a needed break from her chemo for several weeks before Christmas, gaining strength and about 13 pounds. Her hair grew back. Without fanfare, she passed the one-year anniversary of her "less than a year left" diagnosis.
But in late March, Yvonne became very ill after a rare night out, dining with family members. Her cancer had returned with a vengeance.
Yvonne's reaction would be different this time.
"I wish I didn't have this," she said from her bed, a few weeks after the diagnosis, "but I'm not going to wallow in self-pity. I think He's finally calling me, and I'm ready to go. I know my kids can make it without me now, even if they don't know it."
For almost four years, Yvonne Camenos had maintained her dignity in the face of her withering disease. Now, she prepared to die.
Yvonne broke the news of her decision to Jim, her family and her doctor. Dr. Camoriano understood her decision and told her so.
"At some point, the patient has to weigh the value of just living versus truly living," the doctor said a few days after speaking with Yvonne. "She's made the decision to embrace death and I applaud her for that."
A few months earlier, Camoriano had visited an ancient basilica on a trip to Italy. There, he'd lighted a candle and offered a prayer for Yvonne.
"She's among the most memorable patients I'll ever care for," the doctor said, his voice breaking. "I felt she deserved intervention because of the way she's helped her family, the way she is. You have to call on the greater powers sometimes, or else you've got to drink heavily."
Yvonne's husband and children had a far more difficult time with her decision than the oncologist.
"Jim thinks if I'm working, everything will be fine," Yvonne said. "Pauline thinks if I make her tea, everything will be fine. I wish they would all face it. I just want to get my personal things in order. It's already to the point where I don't even know what I'm talking about sometimes."
Although for a time he begged his wife not to surrender, Jim knew that the end was near.
"Her options are basically near zero," he wrote several weeks before she died. "Even though there are one or two chemos she can try, the ordeal and the pain is not something she is looking forward to. As always, she is well-organized and is now making plans for her death.
"I would rather not lose her. Knowing firsthand the grueling experiences she has had to endure during the cancer, I fully support her and her wishes."
During Yvonne's final weeks, she and Jim did speak of many things--the children, good times, her desire to be cremated.
What they didn't talk about or even care about anymore was the insurance. Jim tossed correspondence from Central Reserve into an unopened pile on a table.
"I don't even know what we supposedly owe them," Jim said bitterly one afternoon. "Let them come after me. Screw them. We wasted too much time on that bullshit already."
Yvonne took a final trip to Riverside, California, to see her parents and siblings. On Mother's Day, she and her immediate family went to the Biltmore for a brunch. These outings were important to Yvonne.
But she spent most of her time in bed, tended by family members and a visiting hospice worker. She tried to keep her intake of painkillers to a minimum. "I want to be as coherent as I can as long as I can," Yvonne explained.
Not long before she died, Yvonne told a visitor of a beautiful dream from which she had just awakened:
"Jim and I were in an old hotel in Europe. I think it might be Italy, because it smells like homemade tomato sauce. I'm dressed up for a night out. Looking good. Everything is perfect. I'm not sick. Nothing hurts."
She said it took her a few seconds to realize that she was in her bed, not that dream. She tried briefly to slip back to that sweet, faraway place. But she couldn't.
Propped up on a pillow, Yvonne sought comfort in the framed family photos across the room. Her eyes fixed on a photo of herself, which Jim had taken in late 1994.
In the photo, taken at Pinnacle Peak, Yvonne's chemo-induced baldness is hidden by a multicolored scarf. She appears at peace, impervious to the disease ravaging her body.
The image evoked a small smile from Yvonne.
"That's me," she said softly.
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