The Wandering Gene and the Indian Princess Read online

  Marianne thinks this was when he lost Shonnie altogether. W——’s harsh, negative message, she said. He looked at her like she was a mature adult. I wish he’d been more patient with her. You don’t hand a ball of fire to a patient like that. It was like he had Shonnie cornered. You just can’t demand it, if you want to get through to her. But getting through to Shonnie might have been impossible. Told what she must do, she was the converso rankling before the Old Christian, the Indian resisting the españole, the Hispano resentful of the American, the Witness rejecting the world’s authority while living within the world.

  Marianne also recollects that he used the word quack. W——’s notes say he took the high road—that he asked for proof that K——’s treatments were effective. I explained to them I did not concur with making therapeutic decisions based upon anecdotal cases. I told them I was not an expert with alternative medicine and that I was not skeptical of it [sic], but I certainly was willing to consider any data they might be able to provide or that an alternative medicine provider might be able to provide to show that his or her treatment was in fact valid.

  Both sides dug in their heels. Shonnie said that she would prefer to die intact than to appear dead while she was still living. W—— said that was a common reaction but that most women did very well emotionally afterward adjusting themselves with either partial or complete mastectomies. His case notes make no mention of reconstructive surgery, but Marianne recalls it was mentioned. Shonnie told me, the doctor continued, that she felt that taking part of herself off would destroy her spirit.

  Iona spoke up. You can’t guarantee that your way will save her. Can you say it? Say it. This part isn’t in W——’s notes.

  The matter of the surgical costs must have come up. All of a sudden, Shonnie got to her feet. Holding a batch of forms from the hospital, she threw them on the floor. Her face was red; the veins were popping out on her face. She was madder than her mother had ever seen her. She started to walk out the door, and she turned and shouted, You just want my money! The people in the hallway looked up in alarm. Iona chimed in, To you she’s just a walking dollar sign!

  I was angry by this [sic] and quite openly so, W—— countered. I told her that I thought that was an incredibly insulting remark to make to me and that I did not think it was reasonable or fair at all, telling all of them that I think they did not know me at all enough to make that kind of judgement. She later apologized for making that remark, prior to ending our discussion. . . .

  She stated on several occasions that she knew it was not my responsibility for her choice, said W——. I explained to her that I certainly felt responsible anyway but I certainly understood her choice and told her she certainly was within her right to make her own choice as long as it was reasonable and a well-supported one. That was where I could not agree with her.

  If the doctor had been more conciliatory, he might have tried to explain to Shonnie the difference between a scientific study of a cancer treatment and the anecdotal reports from alternative practitioners. Examples of a treatment’s success are like the numerator of a fraction. They are a good start, but the only way to validate them is to look at the denominator, which includes the treatments that may have failed. To do that, you conduct an experimental trial. You know the number of patients going in, what each person was given, and you measure the outcomes. That’s science. On the other hand, when you hear of cures from complementary or alternative medicine, the universe of patients is not defined and the failures are not counted.

  Dr. W—— wrapped up his statement. I invited them to let me know if there was anything further I could do and also asked them to please keep in touch.

  Shonnie stalked out to her car. She sat in the vehicle by herself for a few minutes. The others knew to leave her alone. After she got home, she went straight to her bedroom and shut the door.

  A week after the meeting with W——, Dr. R—— came back into the picture. She tried to placate Shonnie over the telephone. The cancer was aggressive, R—— emphasized. Shonnie said she would rather die than be maimed. R—— finally persuaded the stiff-necked young woman to consult an oncologist in Denver. To see what he might have to offer, said R——.

  Before going, Shonnie had an ultrasound scan and a mammogram, which showed a multilobed tumor in her right breast, plus a new and suspicious mass in her left breast. Bilateral disease is one of the hallmarks of BRCA carriers, just as her youth was a clue. Three years after the discovery of 185delAG and other BRCA mutations, the probability that Shonnie was a carrier of a mutation was not discussed. Of course, the case by now had moved far beyond genetics.

  Dr. S——, the oncologist in Denver, was very thorough when he met with Shonnie in early December 1997. Among other things, he recorded that four of her aunts had died of breast cancer. He reviewed all of her tests and scans and performed another ultrasound. But the oncologist failed to make headway with Shonnie and her husband when he urged not only a modified radical mastectomy of her right breast but also a biopsy and probable mastectomy of the left. Worriedly, Dr. S—— wrote to Dr. R——, I do hope she gets some follow-up someplace and gets these cancers taken care of pretty quickly since they are showing fairly aggressive behavior.

  Shonnie abandoned the San Luis Valley medical system. She didn’t answer an entreating letter from Dr. W—— that acknowledged her frustrations and reaffirmed his position about her care. Shonnie followed Larry K——’s advice instead. In late 1997 and 1998, like an exile questing for home, scorned and persisting, getting tired, getting sicker, Shonnie traveled five times to Tijuana, Mexico, for treatment, to a place called the Bio Medical Center.

  The Bio Medical Center offered the Hoxsey Herbal Treatment, which was the most famous, or infamous, alternative cancer remedy of the twentieth century. Invented in the 1930s by Harry Hoxsey, an ex–coal miner, it consists of a tonic that is taken internally and an external paste or salve, both derived from natural compounds. Hoxsey’s formula was secret for many years, which only increased its appeal. Hoxsey warred constantly with medical authorities in Texas and other states, and he saw his last U.S. clinic shut down in the 1960s, prompting his nurse and lead acolyte, Mildred Nelson, to move the Hoxsey therapy across the border, where renegade cancer clinics operated freely.

  Shonnie and her mother read up on the Hoxsey therapy. Impressed by the Bio Medical Center’s beautiful building and welcoming staff, Shonnie undertook her first treatment in Tijuana in December 1997. Each course lasted two to three weeks. Arriving as an outpatient each day, she would be given the special tonic, or receive vitamins intravenously, or have wraps containing the caustic salve applied to the skin of her chest. Shonnie also took tamoxifen pills, an established drug for breast cancer having few side effects, though usually tamoxifen is given in combination with chemotherapy. At night she’d stay at a motel in nearby California or at the homes of supportive Jehovah’s Witnesses. The family laid out thousands of dollars during this period. Shonnie had insurance through her husband to cover her care in Alamosa, but the unauthorized treatments by Larry K—— and the Bio Medical Center and the special medications were not covered. The Komen organization gave the Medinas a little money, as noted earlier, and a well-to-do Witness provided them with a car and gas.

  In the spring Shonnie became pregnant, much to her surprise and distress, because she and Michael had always used birth control. She visited an ob-gyn specialist named Dr. Christine S—— in Pueblo, outside of San Luis Valley. Shonnie had already been advised that if she were going to carry a baby, she must have her disease and her medications evaluated. Dr. S—— therefore remembers Shonnie not for her pregnancy but for her refusal to undergo conventional treatment. I added my voice to the others, the doctor recalled, but she had very strong feelings. She did not want to mutilate her body. I felt bad. Such an attractive young lady with a bad breast cancer. The ob-gyn specialist saw Shonnie only that one time. Shonnie miscarried not
long afterward.

  At home between sessions at the Bio Medical Center she followed a diet based on Hoxsey’s prescriptions. Fresh fruits and vegetables were emphasized, in addition to vitamins, laxatives, and antiseptic washes. Shonnie prepared her meals from a mimeographed copy of the approved cookbook, which is stern and sweeping on what not to eat. Prohibited are pork, tomatoes, vinegar, carbonated beverages, alcohol, white sugar, white flour, salt (except for the salt contained in bread and cheese), animal fats, and all canned foods. A sure way for patients to avoid forbidden pork—it could find its way into processed meats, they were advised—would be to buy their cold cuts in a Jewish market. Jews do not use pork, the book pointed out. What was the problem with pork? According to Marianne, it interfered with the Hoxsey tonic.

  Fond of spaghetti and pizza, Shonnie hated to give up eating tomato products. When she would have a lapse, say the heck with it and have a pizza, she’d feel guilty the next morning. She’d cry and wonder if it all was worth it. Marianne invented a spaghetti sauce that substituted red peppers for tomatoes, and she fed and comforted her child. I think sometimes she didn’t want to live, Marianne said. She’d get in those moods. . . . But other times she was so positive about her illness.

  In July 1998, Shonnie called and asked the medical staff in Alamosa to refill her tamoxifen prescription. Dr. R—— responded by registered mail, saying that Shonnie would have to come in for an appointment. If she wanted R—— to be her doctor again, surgery and chemotherapy would be recommended. When Shonnie got the letter, she telephoned immediately. You are not my doctor any longer because you did not agree with my treatment plan, she said.

  She wasn’t getting better. You could tell she was sick because her hair was dry, said Jackie Williams, one of her friends—but she’d never tell you how sick she was. Here is Shonnie glancing into a video camera, wan and a bit puffy. She smiles and moves quickly out of frame. Here are photographs of the family visiting Sea World in San Diego, Shonnie bundled up against the ocean breeze, refusing to act sick. During a break from treatment, they went to the Universal Studios amusement park in Los Angeles. Shonnie loved the violent lurches of the Back to the Future ride, which shook her out of her pain. For by this time the tumors pressing against her skin seemed to scald her from within. It burned, it hurt so much she couldn’t touch herself, said Marianne, but on that ride she was driving and having a blast.

  Celina Gallegos, a friend of the family from the Denver area, visited in the fall of 1998. I remember wanting to hurry and leave, to not disturb her after finding out she wasn’t seeing people, Celina wrote in an e-mail. But she apparently was feeling up to company that day. I remember her wearing a robe and that Iona had done her makeup while we waited. Shonnie was a pleasant surprise. What shocked me I suppose was the full body of hair she had flowing. I knew she hadn’t gone through chemo but somehow I still expected her to be, well . . . less Shonnie. She was actually pretty animated in a subdued sort of way, if that makes any sense. I faded into the background while she went back to the childhood memories she had with Rod (my husband), and although I can’t identify an exact moment, it’s when I realized she was being strong for her family and had come to terms with whatever point it was she was at in her life. . . . [She] was very down to earth and matter-of-fact and if it weren’t for her being dressed in a robe and appearing a little tired after the visit; well, she didn’t seem to have been dying at all. Shonnie certainly may have been a patient to cancer, but I never saw the side of her that was a victim to it.

  Some of those close to her complained they weren’t being allowed to see her. Her cousin Shannon, for one. We had to sneak to the house, said Shannon. Marianne would say, She’ll be fine, she’s doing good, Shannon’s mother, Chavela, added. They kept it private for a long time.

  We kept people from seeing her? Marianne was indignant. No, it was her. She didn’t want them to see her sick. She didn’t want visitors unless she could be made up—her hair, her nails. She’d say, They just want to be nosy. Some people brought Shonnie balloons or presents as a way to get in, but at the end we wouldn’t take them.

  She was picky about visitors, said Iona. The sincere ones, yes. Some pretended that they cared but they were really coming because they wanted to see, What does she look like?

  When Shonnie’s favorite young cousin, Priscilla, showed up one day, Shonnie let Priscilla come in. But Priscilla was crying so hard afterward that Shonnie said, So! That’s why! I don’t want that. I don’t want anyone else in here.

  Her tumors, ulcerating, had broken through the skin, making a noticeable odor. During her last treatment session at the Bio Medical Center in November, when the wraps and salve were changed, Marianne was amazed to see pieces of tumor falling off and other pieces emerging from the tissue in starburst patterns. It looked like a cauliflower with fingers, she said. The cancer was growing so fast it was fungating, or outstripping its blood supply, causing the most greedy cells to die. This also indicated that metastasis was well advanced, the tumors having seeded everywhere in her body. Rather than averting her gaze, Shonnie asked that pictures be taken of her emergent tumors. She thought it was important to document her disease, Marianne said.

  One day when we were meeting at the restaurant, Joseph asked his wife if Shonnie would have approved of my publication of her medical records. The photos of her disease had been burned, but a stack of records remained. Sheets of their daughter’s body, spread on the table for everyone to look at. Yes, absolutely, Marianne said.

  She was terribly vain about her body, of course, but her body was all she had. Remember—there is no soul for a Jehovah’s Witness. The spirit cannot be divorced from the body, nor can the spirit lord over the body’s corruption, lashing the flesh for the spirit’s own satisfaction. The body sickens and rots because of original sin, the almost-genetic inheritance of man’s imperfection. Life may be halted, its substance suspended, until the body is restored in the new system to come. The self is going to be restored.

  Cancer made Shonnie feel like a reject, like she was ugly (Marianne’s words). Outside, beautiful. Inside, ugly. Living a lie. If she had had the surgery, she’d be ugly both inside and out—intolerable. When the imperfection broke through at last, fascinating and awful to view, Shonnie was already dead and preparing to be renewed. As her new body took form, the world that she was leaving was welcome to have the pieces of the old one.

  During her last treatment in Tijuana, Shonnie was wracked with coughing, and she developed a fever. A doctor at the Bio Medical Center urged the family to get her into a hospital in California. Shonnie entered Chula Vista Hospital on December 4, 1998. While treating her for pneumonia, the Chula Vista doctors prevailed upon Shonnie to have radiation therapy for her cancer. She tried it but she wasn’t happy with it, Marianne said, and she refused chemotherapy.

  Shonnie was terminal—nobody was avoiding the prognosis now. It was while she was at Chula Vista that Shonnie had the BRCA test and found out she carried 185delAG. The genetic coloration of her disease led her parents to think that it couldn’t have been stopped, regardless of the therapy.

  Feeling a bit stronger, Shonnie made visits to the children’s ward on the cancer floor. The children wondered how this pale, striking woman in a gown, religious pamphlets under her arm, how could she have cancer and yet have all of her hair? Shonnie would return to her room in tears. Why do kids that young get cancer? she said to her mom. Her cousin Shannon showed up in San Diego unannounced, and the two joked about Shonnie’s lack of tan. Girl, get some sun!

  Shonnie wanted to go home. Because the pain was constant, first she was transferred to the Penrose Cancer Center in Colorado Springs. Pain medication was set up for her, and it was arranged for her to become a hospice patient on her return to Alamosa. Around Christmastime Shonnie traveled over the jagged rim of the mountains into the San Luis Valley, the Hispano homeland, for the last time.

  She cut out all
visitors outside her family. She would not have any hospice nurses or volunteers helping her who might already know her. Marianne was with her all the time, and Michael, and Iona whenever she could, along with Iona’s husband. Michael put up an exercise bar over the bed, because Shonnie still had an appetite and tried to keep her body in shape. She worried about atrophy, said Marianne. Even near the end, she loved to eat. She refused to get bedsores.

  Life goes on, Shonnie would say to Marianne. Her father, her sister, her husband were having a difficult time. They’ll be OK, Shonnie reassured her mother. To Iona she said, Everything goes to you, Kiddo, meaning the pieces of property Joseph had painstakingly assembled in Culebra.

  Early on January 27, 1999, the hospice nurse thought this would be the day. Shonnie had been getting oxygen because of her chain-coughing, the intractable cough that sometimes occurs in advanced cancer cases. Telephone calls were made. Michael went out to buy some bottled water for her. Iona arrived, and Shonnie said hi to her in a weak voice. Iona went over and braided her hair. Shonnie began to slip in and out. When Michael got back with the water, he threw it against the kitchen wall in despair.

  Joseph didn’t make it in time.

  The others wanted Shonnie to keep fighting. Her mother didn’t. Shonnie said, Mom, I can’t do this anymore. I have to rest.

  She looked at me, and I could see that her eyes were cloudy.

  So I told her, Rest. Just rest, Shonnie.

  Marianne added that Mildred Nelson, the director of the Bio Medical Center, died the very next day. She’ll never forget the coincidence of Mildred Nelson dying. At eighty, from a stroke.

  Chapter 9

  * * *

  WHEN HARRY MET STANLEY

  One September day in 2001, a group of genetic counselors was having lunch in Denver. They were Teresa Castellano, Lisa Mullineaux, Lisen Axell, and Jeffrey Shaw. The four friends, who represented different medical centers in Denver and Colorado Springs, used to meet periodically to talk shop. Today Teresa Castellano mentioned the oddity of having uncovered a Jewish breast-cancer mutation in a rather young Hispanic woman. I said, I have a patient with the 185delAG mutation, Castellano recalled, and she’s only in her forties, and she’s from the San Luis Valley. Lisa Mullineaux put in that she had seen a couple of cases like that.