(MONEY Magazine) – On the sandy volleyball court behind a Monona, Wis. neighborhood bar, a fragile-looking woman wearing an oversize lavender T-shirt leaps to slam the ball over the net, her short-cropped blonde hair riffling in the breeze. Back in the car after helping her coed team win its weekly game, she nonchalantly slides off that mop of hair and dabs a tissue over her perspiring bald head. "Losing my hair," she confides, "upset me more than losing my breast." Amy Parks, 38, knows better than anyone how much she still has to lose. Last year the divorced mother of Heather, 15, and Nate, 12, seemed ready for the best days of her life. She had a challenging job as a design engineer at Universal Presentation Concepts, a Madison manufacturer of retail display fixtures, that paid in the $30,000s. In addition, in February she had married 35-year-old Bob Schmook, "my best friend," a bright, funny $30,000-a-year X- ray technologist at local St. Mary's Hospital Medical Center. And to top it off, the couple became ecstatic in June when they learned that Parks was pregnant. "I had my whole life in perfect order," she says. It wasn't until a July prenatal checkup that her family doctor found the lump in her left breast. A month later, the couple were forced to face excruciating alternatives to save her life: Either undergo a modified radical mastectomy to remove the entire breast plus nearby lymph nodes; or terminate her pregnancy, have only the cancerous lump cut out and follow that with radiation treatments that would almost certainly leave their newborn with birth defects or leukemia. With either option, her doctor said her chances of living 10 to 15 years or longer were seven in 10, provided her lymph nodes remained free of disease. They chose the mastectomy and their baby. But by the time Gretchen was born, cancer-free and healthy, on Feb. 1, 1994, Parks' unusually aggressive malignancy had spread to her bones, lungs and liver. While the scourge of AIDS absorbs the lion's share of media attention and research money -- this year, for instance, five times as many government dollars are going for AIDS as for breast cancer research -- it's easy to forget that Amy Parks' disease has also reached epidemic proportions. An estimated 46,000 American women will die of breast cancer this year alone -- up from 35,500 in 1980 -- and 182,000 more will be diagnosed, 69% more than in 1980. According to the American Cancer Society, a woman born 50 years ago had a one in 20 chance of developing breast cancer sometime in her life. The odds have soared to one in eight for women born today. Despite the rising incidence, most patients receive the same treatment as two decades ago, typically some combination of surgery, chemotherapy and radiation. And the survival rates for patients with advanced breast cancer -- an average of two years -- haven't changed appreciably. Parks is unluckier than most: She's one of fewer than 1% of breast cancer victims who are diagnosed with the disease while pregnant and one of only 6% who develop it before age 40. Her mother was equally unfortunate: She died of the cancer at 45 when Parks was 14. Characteristically, Parks is fighting back -- and struggling against the heartbreaking obstacles that increasingly confront seriously ill Americans. Like many health insurers, her family's health maintenance organization, DeanCare HMO of Madison, does not cover the $100,000 treatment that some doctors say is now her best bet: high-dose chemotherapy combined with a bone- marrow transplant. Says Dr. John L. Cova, a medical technology consultant for the Health Insurance Association of America: "Paying for this treatment is the single most explosive issue in health care today." Although the treatment is routinely covered for other kinds of cancers, including leukemia and lymphoma, the National Cancer Institute (NCI) considers it "investigational" for breast cancer because, says the NCI, " more data are needed" to establish whether it's effective. That leaves Parks and Schmook, whose net worth totals only $127,440, searching for less costly therapies while dealing with the loss of Parks' income, caring for their infant daughter and planning for what the family will do when Parks' illness gets the better of her. "The surprising thing about this disease is that I did everything right," the usually upbeat Parks says wanly. With her family history in mind, she had her first mammogram in October 1991, at age 35, followed by another in August 1992, even though the NCI hadn't recommended regular mammograms until age 40 and recently amended that to 50 -- even for women with family cancer histories. Both tests were clean. Nevertheless, in July 1993 there was the lump. Late in August, a surgeon performed a biopsy. "When he told me it was malignant," remembers Parks with a laugh, "I kept looking over my shoulder to see who he was talking to. It couldn't be me!" Says the normally easygoing Schmook: "I was furious at everything and everyone." So began the couple's agonizing choices. HMO oncologist Ed Prendergast spelled out the options -- including, according to standard medical practice, the recommendation that Parks abort her pregnancy if she chose lumpectomy and radiation. And if she continued her pregnancy and decided on modified mastectomy, there was another catch: A follow-up CAT scan to determine whether the cancer had spread would be inadvisable because it too involves radiation. She says that she and her husband gave the decision only "an hour's worth" of thought. "We wanted this baby very much," she explains, "and the mastectomy wasn't presented as any riskier than the lumpectomy and radiation." She had the surgery six days later. "Once the shock wore off, I was pretty optimistic. I was given a long-term survival rate of 70%. The odds were on my side." Then, last December, in the seventh month of pregnancy, Parks felt a lump in her right breast. The doctors initially dismissed it as a swollen lymph node. But Parks wasn't reassured. In late January, doctors finally performed a biopsy. "Bob and I both knew," she says. "We were sitting in the recovery area, and the surgeon came back and said, 'It's not what you want to hear.'" With Parks so close to delivery, her doctors decided to induce labor on Jan. 31, three weeks before Parks' due date. Seven-pound, three-ounce Gretchen was born the next day. The following week Parks had both a bone and CAT scan to determine how far the cancer had spread. The results were devastating. Malignant tumors had spread to her liver, both lungs and to her sternum and spine. Diagnosis: Stage IV, the most advanced phase of breast cancer. According to the NCI, only 18% of Stage IV victims live more than five years. Doctors can't say to what degree Parks' decision to continue her pregnancy may have contributed to the spread of her disease. What is clear is that time is running out. "There is no cure for these women," says Dr. Jeffrey Abrams, a breast cancer specialist at the Institute. "All we can do is try to palliate symptoms and extend their lives." Immediately after the diagnosis, Parks began the standard chemotherapy regimen that she continues today. She takes three cancer-killing drugs for two weeks out of every four: adriamycin and fluorouracil, which are administered intravenously at a clinic twice over every two-week period, and cytoxan tablets three times a day for the same period. Out-of-pocket costs to the family for this roughly $850-a-month pharmacy bill remain minimal: $35.70 every two weeks for DeanCare HMO coverage, which requires no deductible and no co-insurance except for a $10 co-payment on brand-name drugs. Oncologist Prendergast says that he will continue the chemotherapy until Parks' cancer is in remission, probably until Thanksgiving. When the cancer returns, the chemotherapy treatment will be repeated. "It's an endless loop," sums up Parks. "And then you die." Parks didn't like the prognosis. So in March she and Schmook visited Dr. Patrick Stiff, an oncologist at Loyola University in Chicago. Stiff recommended near-fatal doses of chemotherapy -- five to 10 times higher than standard regimens -- along with a variation on an autologous bone-marrow transplant (HDC/ABMT), known as a stem-cell transplant. In such a transplant, the stem cells -- primitive cells that produce infection-fighting blood components -- do not come from another donor but from the patient herself. First doctors collect the cells from the patient's bloodstream or bone marrow. Then she enters the hospital for about four days of intensive oral and intravenous chemotherapy to kill cancer cells. After waiting a few days for the drugs to wash out of the woman's body, doctors replace the stem cells so they can rebuild the patient's by now severely weakened immune system. Assuming no complications, the woman is discharged about two weeks later. Last year, at least 120 U.S. academic centers conducted an estimated 1,000 of the procedures, which cost about $100,000 each, according to Karen Antman, Columbia University's chief oncologist. Stiff says that almost 25% of Stage IV patients who receive the treatment at Loyola survive three to five years or more without any recurrence of cancer, vs. fewer than 5% of similarly diagnosed patients who get standard chemotherapy. Stiff recommended that Parks complete her current chemotherapy course, then undergo the transplant within six weeks -- before year's end. However, there remains the sobering matter of cost. When Parks called the HMO, a customer service rep said that the transplant procedure is not covered. "It is not a standard benefit for breast cancer," says Jack Turcott, president of DeanCare HMO, "because it is a new treatment and it is very high- cost." Such scenarios are multiplying all across the country. As health-care costs skyrocket, doctors and patients are being forced into badgering insurers to pay for treatments like HDC/ABMT. Says L. Susan Slavin, a lawyer with Slavin & Steinberg in Westbury, N.Y. and founder of the pro-bono Breast Cancer Legal Advocacy Project: "These women are desperately ill. It's outrageous that they have to fight insurers when they should be fighting the cancer." On the other hand, there is deep disagreement among health-care professionals on whether bone-marrow therapy has been tested thoroughly enough to be a proven treatment for advanced breast cancer. For its part, the NCI is sponsoring its first widespread clinical trials to evaluate how effective HDC/ ABMT is in treating breast cancer among 1,200 women nationwide. (Loyola is not one of the participating medical centers.) Results will not be known for at least three more years. "The very fact that NCI needs to test this treatment proves it's experimental," contends the Health Insurance Association's Cova. "And when you cover the cost of experimental treatment, you raise health insurance premiums for everyone." Many doctors vehemently disagree. "We know that HDC/ABMT is effective for many patients," says oncologist Antman. "It's the only treatment that offers hope for long-term survival." Several state legislatures concur: In the past few years, Massachusetts, New Hampshire, Vermont and Virginia have passed laws mandating insurance coverage for HDC/ABMT for breast cancer victims. Wisconsin, however, has not. (In August, a congressional subcommittee was scheduled to examine whether federal employee health plans should begin to require the coverage.) It may have taken only an hour for Parks and Schmook to chose between aborting their baby or having Parks lose her breast, but their choices keep getting harder. The sheer expense of HDC/ABMT -- combined with its unknown and sometimes debilitating results -- have left the couple torn. "There's no way we can afford $100,000," Schmook says flatly. "What bothers me," adds Parks, "is that the high-dose chemo destroys your immune system. The women I saw at Loyola looked like death warmed over." In fact, according to the NCI's Abrams, there is approximately a 5% chance that the treatment itself can kill. (Stiff says that no fatalities have occurred in the 30 stem-cell transplants performed at Loyola during the past 18 months.) Shaken and unsure, Parks began investigating some unconventional alternatives. Last spring, for instance, she became excited about a book called The Healing Journey by California radiation oncologist O. Carl Simonton, who argues that meditation and positive visualization can bolster cancer patients' immune systems to help defeat the disease. (Typical exercise: "Imagine your white blood cells as strong, numerous, easily able to recognize and remove any cancer cells.") "These women need some kind of hope," acknowledges Paul Carbone, director of the University of Wisconsin's cancer center, "but there is not a lot of conclusive proof that meditation helps." Nevertheless, early in May, Parks and Schmook flew to Simonton's Pacific Palisades cancer center for a weeklong "educational and psychotherapeutic session." Since the $3,250 cost wasn't covered by insurance, she borrowed $3,000 from her father. Says the cautious Schmook: "What Simonton does is harmless at worst and very beneficial at best. Amy believes it -- that's the important thing." Puzzling over why she became ill, Parks points to the estrogen surge of pregnancy (estrogen is a known risk factor for breast cancer); a meat- and cheese-heavy diet (fat consumption can promote tumor growth) and genetics (scientists are trying to identify a breast cancer gene, which is thought to be carried by one in 200 women and to be responsible for 5% of breast cancers). Then there's stress: Including work she brought home, Parks was toiling 65 hours a week. "I internalized everything," she says. Now, after accepting a job layoff in February, Parks has radically changed her routine. After waking at 8 a.m., she frequently meditates for about half an hour. Often she spends two to three hours researching the latest in experimental cancer treatments, such as gene therapies and immunotherapies, mostly from books and articles sent by her sisters-in-law Peggy Schmook and Karen Boettcher, both Minneapolis librarians. She prepares mostly vegetarian meals and pops daily doses of vitamins A, C, E, betacarotene, calcium, calcium magnesium and a multivitamin, plus iron "when I feel tired" (supplement cost: $15 a month, not covered by insurance). She also attends three different free support groups of breast cancer patients. Ever the optimist, Parks cites a landmark 1989 study at Stanford University showing that metastatic breast ; cancer patients who met with support groups survived on average nearly 18 months longer than women who did not. Not every day is a good one. In recent weeks, the five foot, three inch, 115-pound Parks has been severely nauseated for 10 of the 14 days she is on chemotherapy. "Imagine the worst hangover you've ever had," says Parks, who sometimes can't get up for hours. But she doesn't focus on those times. "I don't feel like I'm dying," she insists. "I understand that, statistically, I have an incurable disease. But spontaneous remissions do occur. There is a part of me that believes if I remove the things from my life that are hurting my immune system, I can be cured." Then, she adds, "I'm not afraid of death itself. What scares me is that I'll miss my kids growing up. I know darn well that Gretchen won't remember me." In fact, the most difficult time so far has been talking about her illness to Heather and Nate, whose custody she shares with her ex-husband (they divorced in 1987). "The kids had to know I will be dying," she says evenly, "so they can prepare themselves and say good-bye. I took them aside separately and said, 'I have something I want to tell you. But first I want to read you a story.'" And she read them an article she'd found about a woman who is still alive 10 years after a terminal breast cancer prognosis, thanks in part to changing her diet and lifestyle. "I said this exact thing is happening to me. The doctors say I'm going to die. But it won't be soon, and I'm going to do everything in my power to make sure I don't." Almost everything, that is, but the bone-marrow procedure. Even if Parks were accepted into one of the NCI trial programs, there's almost no chance that the family's HMO, the NCI or the medical facility would pay for it. Still, says Schmook, "if Amy felt very positive about a treatment, of course we'd try to pay. But $100,000 for a bone-marrow transplant is money we don't have." They do, however, have resources they could tap. With early retirement in mind, the couple have stashed away $34,900 in four savings accounts; $7,600 in the aggressive stock fund Kaufmann (up 6.5% for the 12 months to Aug. 1); $7,100 in two fixed-income IRAs; and $1,500 in Phoenix Balanced fund (up 1%). Their only major liability is a $58,000 mortgage on the $98,500 three-bedroom ranch house Parks owns (monthly payment plus property taxes: $830). A $300-a- month second mortgage is almost paid off. Parks would have to sell the house to get the full $100,000 for the chemo- & and-transplant procedure -- a drastic move that neither spouse is willing to make. "We can't sacrifice Gretchen's or the other kids' well-being for a treatment that may or may not work," says Schmook sadly. The couple have pondered asking their parents for money, but "they don't have much to spare," Schmook says. What about community fund raising or asking friends for help? "We'd feel funny about that," says Parks. As a last resort, they could sue the HMO. Juries tend to be sympathetic to women in Parks' position: Last December, for example, the estate of Nelene Fox, like Parks a mother of three with Stage IV breast cancer, won $89 million in damages from the Woodland Hills, Calif. HMO that had denied payment for just such a transplant. But after examining the DeanCare HMO policy document at MONEY's request, attorney Slavin doesn't offer hope. "Unlike most insurance contracts, this document states clearly it will not cover transplants like this one," she says. "Her chances of winning in court are slim." By March, Parks had drawn up a new will giving most of her assets to her husband, smaller bequests to her brother Clark, 30, and a cousin, and dividing her $60,000 worth of life insurance (half term, half whole life) evenly among her three children, held in trust by Schmook until they turn 21. Parks' ex- husband will gain legal custody of the older two kids after she dies. Parks has not yet prepared a living will, which describes specific life-prolonging medical treatment she does -- or doesn't -- want if she becomes incapacitated. Schmook is having a tough time supporting the family now because Parks' $256 weekly unemployment checks ran out in July and her only current income is $400 a month in child support. Still, he must face how he would manage the family finances after Parks is gone. Child care in the hospital where he works, for example, costs $130 a week. "I can raise Gretchen alone," he says, "but I won't be going on vacations." He has $60,000 worth of term life insurance, supplied by his employer, as well as long-term disability coverage that would replace 60% of his income. Another benefit: a 403(b) retirement savings plan, under which he can contribute a maximum of $9,500 a year into an annuity. (He does not yet participate.) Parks, who late in July took off on a two-week camping trip to the Grand Canyon with Schmook and the three kids (about $1,000), is full of plans. She'll concentrate on her passion for cartooning, hoping to sell some drawings to newspapers and magazines (see the example on page 89). And she still wants to take Heather on a long-promised trip to Mexico or Florida to celebrate her 16th birthday in November. "I could sit in a corner and wait to die," Parks says with a smile. "But what a waste of life."

THE ADVICE Find an advocate. Even though Parks' informal research into cancer treatments is valuable, she could benefit from professional advice. The Medical Care Ombudsman Program (301-657-0404) in Bethesda, Md. provides free assessment of treatment options from a volunteer panel of top doctors. And that could make a big difference. "For instance," says Grace Powers Monaco, the program's director, "if she is accepted into a transplant clinical trial, we can sometimes make insurers pay by pressuring them with our own medical recommendations." Immediately apply for Social Security disability payments, says Susan Axelrod, a certified financial planner with ACS Investment Advisors in Madison. You must wait five months to receive benefits after you stop working owing to disability or terminal illness; Parks qualified as of July. (The taxable monthly benefit amount, about $1,100 for Parks, is based on former salary and number of dependents.) Once Parks dies, her three children will get roughly a third of that amount each until they turn 18 or graduate from high school. Keep a heavy cash position. Because the Parks-Schmooks may need their $34,900 in cash over the next year to pay unreimbursed medical bills, they should make no other investments, says Madison family and money counselor Connie Kilmark. And although Schmook should be taking advantage of his company 403(b) savings plan, he should wait a while because of restrictions he'd face if he needed the money soon. If Parks dies, Schmook should keep as much as $15,000, or six months' salary, in cash for emergencies. For long-term growth, the remainder of his money belongs in a diversified portfolio of 75% stock funds and 25% bond funds, says Axelrod. She favors growth and income fund Mutual Beacon (no load; up 14.3% for the 12 months to Aug. 1; 800-553-3014) and international fund SoGen Overseas (3.75% load; up 13.9% since its inception on Sept. 1, 1993; 800-334-2143). Finally, Schmook needs to update his own life insurance coverage. An additional $200,000 of 15-year level term coverage would cost him a reasonable $270 a year at solid insurer First Colony (804-845-0911). He should also update his will to name a guardian for Gretchen. Moreover, both Schmook and Parks should prepare living wills as soon as possible (about $100).

Parks and Schmook agreed to apply for Social Security disability and prepare living wills soon. Parks also will contact the Medical Care Ombudsman Program. But the couple is still hesitant about the transplant procedure. To their relief, the chemo seems to be working: A July CAT scan showed the cancer to be in remission everywhere except in Parks' liver. "The trick now is getting it into total remission and keeping it there," she says.

BOX: THE PRICE OF HOPE

A controversial bone-marrow transplant might extend Parks' life for some years, but its $100,000 cost would deplete the family's $127,440 net worth.

INCOME Salaries and unemployment $54,150 Child support 3,700 Loan from Parks' father 3,000 Interest and dividends 1,150 TOTAL $62,000

OUTGO Income taxes $14,000 Mortgages, property tax 13,570 Savings 10,500 Home furnishings, utilities 5,050 Medical expenses 4,800 Food 4,640 Entertainment, vacations 4,200 Clothing, miscellaneous 2,030 Gifts and donations 1,400 Vehicle insurance and gas 1,170 Life insurance 640 TOTAL $62,000

ASSETS House $98,500 Savings accounts 34,900 Investments 32,950 Vehicles, personal property 26,000 TOTAL $192,350

LIABILITIES Mortgages $60,400 Loan from Parks' father 3,000 Whole life insurance loan 1,510 TOTAL $64,910

NET WORTH $127,440