We camped in the wilderness by a trout stream in Idaho. We went to the beach at Hookipa near home late afternoon on Sunday when the crowd goes away. We watched sunset, smoked a joint, drank more beer and built a fire in a ring of stones. Around the coals we set corn and potatoes wrapped in foil, and we grilled fish along with sliced eggplant that had been soaked in olive oil. We watched the big yellow moon rise and screwed in the sand and then cleared out for home in time for Masterpiece Theater.
Like icing on cake she shared my love for the little fish of garish color and keen curiosity, and she swam like one, graceful in free dive as a dancer. She could get thirty feet and cruise for a minute on a single breath. We snorkeled many reefs in Hawaii and a dozen more in the Windward Islands of the Caribbean and a dozen more off Yucatan. We hiked for miles on deserted beaches stark naked and snorkeled again with our friends, the turtles and eels, the groupers and sharks. We achieved the bliss of Never Never, until four years in, when she told me one night after dinner that she got a call that day from the doctor about yesterday’s mammogram. It showed three tiny dots, micro-calcifications that appeared acutely suspicious to the pathologist.
“I’m having a biopsy tomorrow, to be sure.”
The biopsy was to remove a narrow slice of breast tissue for scrutiny under the microscope. The three dots warranted this further analysis. “Then you really don’t know yet if they’re tumors.”
“No. But the pathologist thinks they’re tumors.”
“Why?”
“I don’t know.”
“Do you want me to go with you?”
“Would you?”
“Why wouldn’t I?”
“You’re busy.”
“Busy with what?”
“Please don’t do that.”
“Okay. I’m going with you.”
We watched TV, thinking inevitable thoughts. We turned in. We slept fitfully. We went in the next morning for the biopsy, and she slept off the anesthetic until after noon.
Rachel was then forty-one. She would proceed to show me the meaning of faith, initiative and courage disguised as good manners. But I recall a single moment on the second evening of our knowing; it was not another out-of-body expression but did again affirm what was to be, out of the blue, from the ether. On the phone with the pathologist, who confirmed that the three dots were tumors, she spoke evenly and wrote things down. I was taken by the calmness on the surface of her pond, and I knew this intrusion was ours to share. With nary a ripple she proceeded with life. I wanted to learn how she did that, and I knew that the trouble upon us would map our next trip together. The moment was a milestone. She hung up, smiled resolutely and said, “I have breast cancer.”
I asked what she wanted to do. She didn’t yet know. She would go along for now with the standard regimen of the diagnostic facility, keeping her appointments to discuss her “options.” She wanted to see what they had to offer and was scheduled for next week in Honolulu to meet with the oncologist, who would explain and plan.
I foolishly asked, “Do you want me there?”
She wisely said, “Yes.”
We sat and thought. Rachel has a college degree in nutrition. She owned a health-food restaurant once and remained intrigued by immune system support. Still, she stepped boldly where so many fear to tread.
The oncologist in Honolulu was an egregiously friendly fellow with a how-do-you-do and handshake for each of us. Then came polite questions on who is whom and who does what. Defaulting to grim resolve, he put a smiley face on a difficult situation, which seemed an attempt to frame our reality in black and white. On a legal pad he made line drawings of breasts and tumors, assuring Rachel that prospects for a complete cure were darn near a hundred percent. He spoke to her and only her. I was the boyfriend, an unrelated observer, more or less. Yet he seemed to sense more than indifference in my presence, perhaps ignoring the aggressor in the woodpile. I allowed for the possibility that he addressed only her in deference to legality, since boyfriends have no legal say in critical healthcare decisions, yet the exclusion felt obtuse. Maybe I observed too keenly. I remained silent with visible difficulty. Maybe he sensed my distrust.
“First, we’ll have major mastectomy. This is standard procedure now. Many, many women are doing this with wonderful results. By removing the breast entirely, we can eliminate what you might call habitat for these tumors and any others.” The happy face dissolved to scientific certainty.
“Why not remove both breasts?” I asked, perhaps challenging his case, in fact pressing for insight on the complete picture. “I mean, if habitat removal is the best course.”
With a happy face again, he nodded approval. “Well, in fact, many women do have both breasts removed, to be sure.” He smiled most warmly here. “Yes. We can do that. It’s okay.” He seemed oddly gratified that the question had been asked, and he’d had the right answer ready, apparently oblivious to my cynical sense of irony. Or maybe he chose to ignore the sarcastic side of the question. I was a subtle smart ass with chronic symptoms, to be sure, but in this case my pre-rational nuance was a source of effective realization.
Rachel and I shared the quizzical response.
“Secondly, we’ll put you up for three days a week for twelve weeks at a very nice place just down the road here so you can be all comfy cozy during your radiation treatments. And I’m going to tell you right now”—he touched her gently, a smarmy, learned technique in vogue then with an obscure name, something like neuro-transmittal response. It should have been called operant conditioning with cheese—“don’t you worry about a thing. This is all covered by your insurance. We’ll start with small doses and then we’ll build you up.”
“Build her up? With radiation? Don’t you mean you increase the dosage?”
“Do you mind? Can I finish here?”
“Sorry.”
“Then, just to be sure, we’ll have some chemotherapy. You won’t feel so good during that one. Do you have someone who can take care of you?”
Well, I deserved a set-up like that. I was the fool nobody could see, and I laughed. But Rachel didn’t need a pissing contest. She interjected quickly, softly and to the point. “Don’t radiation and chemotherapy destroy my natural immunity?”
“No. We don’t know that.”
“We don’t know that cigarette smoking causes lung cancer either, do we?” This widely broadcast corollary came from me, to sustain clarity on what we know of predisposition in the medical industry. I am inclined to disbelieve many if not most claims or contentions or, worst of all, mere suggestions of the medical industry, compromised and challenged as it is by the legal industry. I didn’t mean to indicate that the oncologist was a chump; it just came out that way, and this exchange only heightened my prejudice.
“We need to schedule you right away, to be sure.” He again ignored my foolish question and me.
“I’m not having surgery,” Rachel said.
“What do you mean, you’re not having surgery?”
“What part of that statement don’t you understand?” I asked.
“We have trouble here,” he said. “We have a young woman threatened by a fatal condition, and now she’s being led astray.”
“But it’s not his decision, is it?” she asked.
“No, it’s not!”
“It’s mine, isn’t it?”
“Yes, it is. And I’m behind you all the way.”
“I’m not having surgery. I understand why tumors grow, I think. I think people have carcinogens passing through their bodies every day. All people do. The carcinogens take hold when the immune system can’t get rid of them.”
“That’s right. But we can get rid of them.”
“But with your way, I’ll weaken my immune system for the future, won’t I?”
He shook his head. “We want to give you a future.”
“Won’t I weaken my immune system?”
On the verge of indiscretion he glared, his head shaking slowly as a grandfather pendulum.<
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She proceeded. “I think I’m better off if I can strengthen my immune system and see if that can get rid of the tumors. That way I won’t risk my life every time I travel, when I’ll be exposed to simple infection. Doesn’t that make sense?” His headshake continued. “Why not? You know these treatments compromise immunity. Isn’t this entire condition based on the immune system?”
He fumed and reddened like a dormant volcano on the verge of awakening, and he stood. “What we have here is another tragedy in the making. What we have here is a breast-fixated man who’s willing to risk the life of his . . . his . . . girlfriend for his own petty lusts.”
Well, now, that was aggressive. Another tragedy? Had others also declined this guidance? Never mind; I also stood. “What we have here is a perfect stranger coming on warm and fuzzy with a knife and drugs and gamma rays. What we have here is presumption. You need a Q-tip so you can clean the . . . the . . . stuff outa your ears, so you can hear what this woman wants. Get the picture?”
He leaned forward, but what could he do? Take a shot? Oh, baby. His movement was mere posturing—but then so was mine, rendering a scene of two jerks sorting personal problems. By now Rachel was also up, telling me to shut up and sit down, or I wouldn’t be welcome back. She turned to the indignant man in the white robe and said, “I apologize for his behavior. But he’s listening to me more than you are. I’m not having surgery. That’s my decision. Thank you very much.” And out she stormed, leaving Dr. Strangelove and me to fume and mumble.
She just said no and kept on saying it. When the months and years passed with no recurrence, they called her a nut, a lucky nut, like she drew an ace to a king with the dealer showing twenty. That’s how it is when you do something right; it looks easy.
She went to saturation-level vitamins and antioxidants. We searched for the guidance not offered by the American Medical Association. Information other than promotional good cheer on radiation, surgery and chemotherapy was extremely hard to find in the days before the Internet. Either you knew exactly where to look, or you found yourself at the end of your line, pleading to the thin air. We contacted clinics with offices in San Diego and treatment facilities in Tijuana, because all cancer treatment not sanctioned by the AMA was illegal in the USA.
We visited John Yung, a Chinese healer in Honolulu who saved Suzie Schwab from kidney cancer after a licensed member of the AMA gave up, giving her three weeks to live, six on the outside. You will die then, she was told. It’s not so bad, given the time to put your affairs in order.
Suzie and her husband Sylvan run the East Maui Animal Refuge, an otherworldly scene in which no animal is put down. Three-legged dogs, one-eyed cats, wingless ducks and chickens, homeless goats, piglets delivered from dead feral sows in the act of butchering, a blind owl and on and on. What a couple of nuts, Sylvan and Suzie. They heard about Rachel and called with information on John Yung. That’s how you find out; people hear and call you, which isn’t exactly underground, but then in the Age of Information, it’s not exactly not.
He was seventy or eighty and put Rachel on a ten-day fast on the same regimen he’d prescribed for Suzie and all cancer patients. Rachel went from a hundred pounds to eighty-seven. She drank the juice of red potato skins, a five-pound bag’s worth a day, and tied her gut in knots with raw vinegar straight up, an ounce in the morning and an ounce in the evening to change her body’s pH in order to discourage the unwanted guest. Since then this approach has been poo pooed, though Rachel’s effort, if anecdotal, proved successful.
Then came noni, a yellow fruit that grows in Hawaii on a bush-like tree. It looks like a lemon from afar but is thin-skinned like a nectarine. Noni gets mushy as it ripens till it turns to pure squish. Up close it will bend your knees, because it smells bad, like socks and skivvies after the game, unwashed. The old Hawaiians discovered the curative power of noni over their worst affliction before the missionaries, melanoma. More recent Hawaiians have applied noni to other forms of cancer with success. And noni is now highly promoted and marketed around the world as a cure-all for what ails you. It’s often mass harvested and cut with white grape juice, and like many truths and sacred treasures once held dear, it has been largely homogenized by a world of growing demand.
But I digress; in the mid-90’s noni was still an obscure, little known plant referenced only by the culturally savvy for its use in olden times.
So there we were, a pair of oddballs by the side of the road out toward Makena, back when Makena Road was made of dirt, or Wainapanapa on the windward side, where the noni also grows wild. We found it, picked it, quartered it, put it in a sun tea jar with a tap and let it sit. We watched in wonder as the noni first changed with a brown mottling, then darkened and went cloudy and then mushy. Then it generated liquid. Rachel drew off and drank half a cup in the morning and another half in the evening. She observed that noni juice never fermented, indicating magic in the enzymes, the building blocks of immunity.
Then came more and more again—chaparral was favored as heavy medicine by the Indians of the southwest. Now it’s illegal, banned by the FDA under pressure from the AMA. Chaparral has been proven a hundred percent effective anecdotally but has yet to yield ninety-six percent or better results in the double-blind format. Its subsequent illegality is based on its harsh astringent effect on the kidneys, and also on what Dr. Andrew Weil calls arrogance. The same goes for essiac, red clover and sassafras—yes, the same root I picked as a child for tea, the active taste in root beer—illegal. But if you take the time to seek these things, you may find them.
We dabbled in meditation, or rather she dabbled; I was a practitioner. She said she really liked it, except for the sitting still when she had so much to do. And so much not to do; she went cold turkey on fat, salt, beer, wine, liquor and caffeine. She took a year to gain her weight back because everything she ate was either raw or slightly warmed. She reluctantly agreed to attend a “cancer survivors group” at the urging of those who insisted on monitoring her deviant behavior. The cancer survivors group was mostly women and the format was like AA, with each survivor at the podium giving her name and saying, “I have cancer.” Then each gave her treatment regimen, her progress along the path of that regimen, her feelings and outlook for the future.
This is called validation and derives from the psychiatric wing of the protocol section of the policy department of the AMA—or maybe that’s only my take. Then the survivor shares her status on the road to recovery. None of the survivors but one had hair. All but one were ashen. One woman could hardly speak because her tongue was swollen to resemble a small salami as a result of the radiation. She said, “Ah tho ha-y. I ohy ha wuh mo raiathu tweauh. I juh wah geh ih eh ah geh ih ovah tho I cah bea ith thig.” I’m so happy. I only have one more radiation treatment. I just want to get in there and get it over so I can beat this thing.
Rachel told them she’d had no surgery, no radiation and no chemotherapy. She looked vital, so full of life you could only wonder what she was doing about her cancer. “I don’t think I have it anymore,” she told the others. But she didn’t think anything had changed on its own, she said, proceeding to share her program of vitamins and exotic elixirs.
But . . . can we do this? They collectively suddenly doubted their regimens. Rachel told me later that she could see them poised on the brink of hazard. She told them, “You’re all doing exactly what you should do. We all have to do what we believe is best for us.” And she stepped down, assuring me that she’d felt compromised, forced to present herself and her regimen in a format that was meant to make her look reckless but actually cast doubt in the minds of the others. She would not go back.
And we moved on, measuring “survival” in six-month increments, each a milestone with a mammogram showing clean, healthy tits. The attending surgeon on Maui was older and more reasonable than the consulting doctor in Honolulu. I think the difficult people of the world are destined to deal with each other, so he and I only answered our fates. The second doctor reviewed
the film negatives, repeated the pathology assessment, copped a feel, smiled and shook his head. Oh, and he mumbled something new on each visit, like: “You’re a lucky one,” or, “I only hope this doesn’t turn on you,” or, “We can’t be sure on this one,” or, “Please don’t give anyone else any ideas,” or, “We’ll really never know.” He never said, “What a nut.” I think he was too polite. At any rate, we all got along.
Dr. Strangelove called Rachel from Honolulu from time to time to “see how you’re doing.” Each time he asked if she was still hanging out with, you know, that guy. His interest was strictly professional, and so was his offer to examine her, you know, socially, should she find herself in town with a few hours to kill and some ignorance she’d like to process.
“Oh, yes. He’s still around,” she said every time. And, “I’ll sure call you,” she replied to his invitation.
But proving a point on health and healing with a few surgeons was small glory compared to the real triumph, which was rediscovering the power of nature and putting it on equal ground inside the body as well as outside. Initial perception of Rachel as “a lucky one” changed soon enough as women came to her, women who heard through the grapevine that she just said no. They came with constrained hope, these women who faced the malignant prognosis. They feared as we had feared and wanted to say no, but didn’t know where to turn, unless Rachel had something to share.
She wrote her regimen down for them, eight or ten pages of it. She preferred longhand but couldn’t say why. She spent hours with those who sought further guidance, maybe ten women in all, most with breast cancer and some with other tumors. I don’t know if any of them could achieve what she did; I tried the vinegar once. It’s not a matter of will or fortitude; the throat constricts and refuses. Difficulty with the noni began from five yards out. But in the face of rare achievement she remained humble, facing each mammogram with anxiety. Each one felt like another roll of the bones, and each helped insulate the raw nerve the doctors so brazenly touched. Confirmed in her choice, affirmed in her transformation, enforced in her skill, she viewed life as a manageable process no matter what, as long as you know where to get the right information and remedy. She was a winner, gold medal, center stand.
Brainstorm Page 2
