Kristi Michael's mole wasn't a beauty mark. It was skin cancer.
By Simon Dumenco
Photo editor: Nadine McCarthy
Hunched over the bathroom sink one evening, Kristi Michael got the first hint that something was wrong. She was dyeing her thick, brown hair black when some of the solution trickled onto the top of her right ear, where she'd had a mole for as long as she could remember. "For the first time in my life, it started stinging," she says. Though the pain quickly subsided, her concern didn't. Over the next two weeks, she became aware that the mole didn't look the same as it always had: It was now "ugly and raised."
A friend gave Michael the name of a dermatologist not far from her home in Tampa, and the doctor had good news for her: He wasn't terribly concerned. "Do nothing for now, but keep an eye on it," Michael remembers him telling her in the spring of 1997. After all, Michael, then 31, didn't seem to be at particularly high risk for skin cancer. "There wasn't any history of cancer in my family," she says. And though Michael is white, she's not particularly pale, and she has dark hair. (Caucasians with fair skin and light hair are most susceptible, though people with dark coloring are not invulnerable.) She also never spent much time in the sun, even as a child. To get a tan, she did what she thought was safer: She used tanning beds. "Working Floridians don't have the time to go lay around on the beach," says Michael, a freelance makeup artist for film and television. "That's the funny little secret about Florida: Everyone, except the tourists, is brown from the tanning beds."
Still, she says, her doctor's "do nothing for now" advice "just didn't sit right with me." Michael, in conversation, alternates between sounding entirely no-nonsense and exhibiting a disarmingly wicked sense of humor. She pauses, and then continues: "I mean, I never watch anything. Who wants to watch to see if something grows?" Letting out a short, rueful chuckle, she adds, "That's the most moronic thing I've ever heard, actually."
She immediately sought a second opinion from Edward Farrior, a plastic surgeon who specializes in head, neck, and face surgery. Michael had decided that even if her mole turned out to be benign, she wanted it gone. When Farrior saw it, he decided that was the only option. "He recognized it immediately as melanoma," Michael says. "When he told me, I couldn't breathe -because I knew what that meant."
After enduring melanoma that metastasized her brain, “I cringe when I see people intentionally frying in the sun,” Kristi Michael says.
Plenty of people get skin cancer -according to the American Cancer Society, more than one million new cases will be diagnosed by the end of 2001. But melanoma, the rarest form, which arises in the cells that produce the skin pigment melanin, is exceedingly difficult to treat. Eighty percent of skin cancers are basal-cell carcinoma and 16 percent are squamous-cell (each named for the cells in the affected layer of the epidermis); both have a better than 95 percent cure rate if detected and treated early. But while melanoma amounts to just 4 percent of skin-cancer cases, it accounts for approximately 80 percent of skin-cancer deaths-some 7,800 people are expected to die from it this year alone. In the past seven years, the odds of an American man or woman contracting it at some point in his or her lifetime have jumped from 1 in 100 to 1 in 75.
Kristi Michael's diagnosis was confirmed with a biopsy on a Thursday. On Saturday, she was under a local anesthetic as Farrior cut out the tumor. "He canceled a golf game to operate on me, which was very cool of him"-but his sense of urgency wasn't lost on her.
Michael's tumor rated a Level IV on the Clark Level of Invasion, a means of gauging the seriousness of research melanoma; only Level V (indicating penetration to the deepest layer of skin) is worse. That meant that, despite the tumor's removal, there was a good chance that the cancer had stealthily gained a foothold in her body and could spread. A node biopsy showed that so far, though, the cancer had not entered her lymph nodes, the body's first line of defense against disease. Once this system is compromised, melanoma can spread like wildfire -metastasizing rapidly to other organs, including the brain.
Michael, who had wisely refused to "wait and see" when her mole first started bothering her, now had no choice but to do just that. "But I couldn't afford to freak out. I have a family" -Michael has a husband, Cliff, and a daughter, Alexandria, now 11- "so I internalized a lot of it. Because I still had to make dinner at night, I still had to get my kid to school, and I still had to run the household, you know?" Nevertheless, she says, from the start of her illness, "I didn't hide what was happening. As I got test results I would tell them."
But no test was needed to alert her to the fact that the melanoma was, in fact, spreading. The following February, she noticed several pea-size lumps in her neck. The new tumors suggested that her lymphatic system was indeed under attack.
The voice inside of Michael that had prompted her to reject her first doctor's nonchalance was unfortunately devastatingly prescient. The sharp sting on her ear as she dyed her hair that evening in 1997 foreshadowed a painful four-year medical odyssey: more than half a dozen surgeries, repeated radiation and chemotherapy, and a never-ending mad scramble for more treatment options.
"Melanoma is a formidable foe," says Michael, curled up on the couch in the living room of her spacious, modern condo. "It's aggressive and sneaky," and -given that it's often overlooked in early stages by doctors- "it's even capable of disguise."
The same could be said of Michael. She's certainly capable of disguise: Besides her arsenal of makeup, she's got several wigs (including hot pink and baby blue ones) to cover up her surgery scars and chemo-induced hair loss. She's certainly been aggressive: Her doctors and nurses speak admiringly of her iron will and her emotional and physical resilience. And she's even had to be sneaky: Twice, she says, she's been told "there are no more treatment options for you," but she's done no small amount of politicking to gain admission to little-known experimental treatment programs.
On this blazingly sunny spring afternoon, Michael's waiting for her best friend, Stan Kozma, to come by to drive her to one of her doctors for a routine blood test. A Beck CD is playing on the stereo, and occasionally Michael is briefly distracted by the Animal Planet cable channel-the TV's on mute-which at the moment is showing a dog undergoing surgery. But when asked whether she's ever thought of just giving up –of accepting that she might not be able to beat this disease- her voice hardens and she sounds gripped with conviction. "All these years," she says, "I never thought I should just quit. I'll tell you that as a mother, I never, ever thought that."
"Kristi's just a very positive person," says Nancy Fose, a nurse in one of Michael's doctor's offices. "Always has been." Kozma concurs. "I've never once heard her say, 'Why me?"
Although genetics and immune-system health are factors, the main cause of skin cancer, doctors say, is ultraviolet radiation. Researchers aren't sure how much sun is too much, but it's believed that extended, unprotected exposure before adulthood-especially for those who burn easily-increases the risk of melanoma.
"The generation that grew up wanting to have the perfect tan," says Diane Berson, an associate clinical professor of dermatology at the New York University School of Medicine, "is now unfortunately experiencing some of the side effects of that extra sun exposure."
Throughout the '90s, Michael says, "a lot of our friends owned tanning beds. My husband and his friends were always real, real dark." Tanning, she says, "was almost like a competition."
But while tanning beds screen out some UVB rays that cause burning, they are not necessarily safer than the sun, as Michael assumed. "We know that they're bad," says David J. Leffell, professor of dermatology and surgery at Yale School of Medicine, and author of Total Skin: The Definitive Guide to Whole Skin Care for Life (Hyperion). "Although you may not be able, scientifically, to make the link between Kristi Michael's use of the tanning bed and her melanoma, we know that the UVA radiation emitted by tanning bulbs does have a carcinogenic effect. There's no such thing as harmless ultraviolet radiation when it comes to skin," Leffell says.
Michael was vulnerable in another way, too: She had never received a full-body skin check -something that dermatologists are increasingly suggesting that everybody get at least once a year. "It has to be from the scalp to the toes," Leffell says. People are encouraged to do self-exams of their moles as well, using the so-called ABCD checklist-asymmetry, border irregularity, color variation, and growth in diameter. (These warning signs are detailed online at melanoma.net.) According to the American Cancer Society, melanoma is highly curable when detected early: Localized melanoma, which hasn't penetrated beyond the outer layers of the skin, has an average five-year survival rate of 96 percent.
Kristi Michael's melanoma, though, was hardly localized. After the arrival of the tumors on her neck in February 1998 -nine months after she had the mole on her ear removed- Farrior quickly scheduled a second surgery, this time submitting Michael to an elaborate operation in which her neck was cut open and a chunk of muscle removed to allow access to her lymph nodes. Farrior excised 54 questionable lymph nodes -and four tested positive for melanoma.
"You have a moment of shock," Michael says now, "and then you have to collect yourself, and say, 'OK, what's the plan of action?' Everything to me is a battle that I have to figure out how to win." In March of that year, Michael began a course of chemotherapy and radiation to help her body kill the cancer cells, or at least slow their proliferation.
The whole time, “I didn't tell anyone I worked with that I was fighting melanoma." As part of the local film- and television-production industry, she says she "didn't want to become the topic of gossip. If a producer hears that you might have an illness, despite the fact that you can work, there's a notion that you might keel over on the job."
Soon enough, though, Michael's condition got worse-and harder to conceal. In the spring, what she refers to as a "blue sheeting" of cancer nodules -a "disgusting, horrifying-looking" discoloration- appeared on her right ear and spilled down her neck and back. Her regimen of chemotherapy, which she continued through the fall of 1998, just wasn't working.
Michael still has reams of meticulous notes from this period, testament to her desperate drive to understand her condition. "There are patients who go through cancer treatment," Kozma says, "who just say, 'I don't know what it is, I don't know how much I have to take, just hook me up and tell me when I'm done." Michael didn't have that luxury, especially since her doctors often seemed as baffled by her health problems as she was. As time went on, she and Kozma -who more than any of her other friends or family has helped Michael navigate the thicket of medical information related to melanoma-realized that because cancer research progresses at such a rapid but erratic pace, it's often up to the patient to find out about clinical trials for experimental drug therapies that may not be available locally.
"Kristi is so persistent," says Wen-Jen Hwu of the Memorial Sloan-Kettering Cancer Center in New York, a doctor Michael first consulted in 1999. "I have to say that patients can sometimes be more informed [about treatment options] than some busy physicians," Hwu says.
"Kristi is one of those patients."
Armed with knowledge gained from the Internet, Michael (with help from Tampa-area doctor Jeffrey Paonessa) secured an appointment at the National Cancer Institute in Bethesda, Maryland, where doctors would examine her and consider including her in a trial of a promising drug. But then, less than 24 hours before Michael's departure, an NCI nurse called to ask some additional questions about her health history. "After several minutes, I was told that I was ineligible"-because of her prior exposure to a particular drug. (In clinical trials, researchers usually want patients who are, in regard to certain treatments, "drug virgins.") "I hung up numb," she says, "staring at my plane ticket and packed luggage."
Once again, though, Michael moved past her grief and devised a new plan of action. At Michael's request, several of her doctors, who also believed that her prior treatment shouldn't disqualify her, faxed letters to Steven A. Rosenberg, the NCI researcher in charge of the program. "Cancer is hard enough," Michael wrote in her own plea, "but when help's hand was extended and then suddenly jerked away, it was more devastating than any failed treatment." She even had her local congressman send a fax. "To this day," Kozma says, "we're not sure what did it, but the end result is, she got into NCI."
Every three weeks for 11 months, Michael flew to Bethesda for three days of Interleukin 2 (IL2) treatment and an experimental melanoma vaccine. The IL2 side effects, though temporary, were devastating: The drug causes capillary leakage-resulting in rapid fluid buildup in the body-and Michael would gain nearly 30 pounds in days. She also experienced nausea and vomiting, migraines, and intense itching. "I would have hallucinations of dark figures creeping around my room, and nightmares," she recalls.
As brutal as it was, the treatment saved her life. By the end of 1999, visible signs of her melanoma had entirely receded, and a CAT (computerized axial tomography) scan showed no body metastasis. Though doctors couldn't guarantee that the cancer was gone, this was as close to a clean bill of health as Michael had received in the two and a half years since her ordeal began.
Though Michael is covered by health insurance, she's had to shoulder all manner of co-payments and non-covered expenses, such as her flights to Bethesda and New York. A while back, her local oncologist's office-which had already collected "thousands and thousands of insurance dollars" issued a "co-pay" invoice to Michael for $5. The nerve of them! she says she thought at the time. Michael, who has a knack for finding comedy in the unlikeliest of situations, decided to send the hacks in the billing department a little message: "I took great care to get on top of a photocopy machine and photocopy my ass in just the right way. This sounds gross, but you have to get your underwear in just the right place so everything's kind of covered-but you clearly want them to see that it's a picture of your ass. You know, that's not easy," she says, laughing. "I had to do a lot of copies." After achieving the perfect ass image, Michael wrote on it, "I've got your five bucks right here!" and sent it to her doctor's office-where, fortunately, they got "such a friggin' laugh out of it" that they ate the $5 invoice. "Kristi's nature," Kozma notes, "is definitely not to consider herself a victim."
By January 2000, Michael was so confident of her recovery that she went skiing with friends. "I felt fine-I was fine. I had a great time." After the trip, though, she was scheduled for a routine MRI (magnetic resonance imaging) scan, which melanoma patients in remission must periodically submit to for the rest of their lives. To her astonishment, the MRI revealed three tumors in her brain.
Her CAT scan just six weeks earlier had shown no metastasis-but now, less than 48 hours after she'd tackled the Double Blue Diamond runs in Park City, Utah, doctors at NCI were telling Michael that her head would have to be cracked open to remove a grape-size tumor just under the surface of her skull; two smaller mid-brain tumors would have to be attacked later with a sort of virtual surgery using a focused radiation beam. "They couldn't believe that I was able to walk a straight line, much less ski advanced slopes."
Steeling her will once more, Michael researched her postoperative treatment options, deciding on radiation. Again, she didn't hide her ill health from her daughter. "I wanted Alex to know how serious I was when I was saying, 'You're going to wear sunscreen, and you're not going to go the beach.' She started understanding my nagging more-that it wasn't just Mommy being mean, it was Mommy trying to save her from getting cancer." As a precaution, she even had two non-cancerous moles removed from Alex's back.
Even as Michael was ensuring her daughter's safety, though, her own treatments were failing. In September of last year, one of her mid-brain tumors started to bleed, resulting in partial paralysis on her left side. By November, a new MRI revealed, the tumor had doubled in size. On Wednesday, November 8, she hit the "lowest low" in her four-year ordeal.
"One of the doctors looked at me and said, 'Kristi, you need to go home and call hospice.' He told me that I should start facing the fact that, you know, I could die from this.
And that was horrible. I was crushed."
Michael says she felt anger, too. "I said, 'Does this mean that I'm off your programs?' He said, 'If we have protocols that you're eligible for, you're more than welcome back here-we love you here.' I said, 'Well, I thought you did, but you know, what's this shit?' They just honestly didn't have anything for the brain -they weren't winning in that area."
Fortunately, Michael and Kozma found another new research project, at Memorial Sloan-Kettering. It involved a combination of drugs-Thalidomide, known for causing birth defects when used by pregnant women in the '50s, and Temozolomide-designed specifically to attack metastatic melanoma in the brain.
In January, an MRI revealed what Hwu, the supervising oncologist, calls an encouraging "partial response" to the regimen: Michael's mid-brain tumor had halved in size. Some of the other 15 participants have had even greater reductions in tumor size, and Hwu and her colleagues are preparing to submit the study to the New England journal of Medicine.
"I think literally hundreds of people are praying for me -friends and family and doctors and nurses," Michael says today, as she endures the latest round of drug treatments. "And I feel like God's going to honor those prayers-I do. I feel like it's going to be OK in the end."
And unless one of her doctors sends another $5 invoice-which will, of course, necessitate more ass copying-Michael says that she plans to devote all of her spare energy to continuing to develop a "fantastic new makeup line that no one has attempted yet" along with "a product line whose profits would go to the fight against melanoma." She and Kozma are also working on a screenplay about her experiences and are building a Web page: kristimichael.com, which will include a lengthy list of thank-yous to doctors, nurses, and friends, plus "tips for melanoma patients on how to handle IL2, chemo, radiation, et cetera," as well as tips for everybody else.
"If you want a tan," Michael says, peering out from behind the wig that frames her face, "get it out of a bottle."