I was not my breast—and I was. For the man behind the screen (“He's terrible with patients,” my friend Miriamma told me) I was the shadow of my breast on a mammogram. For the pathologist I began and ended with the slide of breast tissue viewed through the lens of a microscope. Specialists would see me as my right breast because that's where cancer had been found. Leyaks, body fragments abstracted from the life of the body, are creatures of the night in Bali, but they haunt the corridors of the Medical Center in Seattle, a place designed to isolate body from soul and so reduce it to a mechanism. To enter there was to risk dis-integration.
* * *
In 1959 I asked the obstetrician about breast-feeding, and all professional warmth faded from his face: “Why would you want to do that?” So I retreated. I'd broken too many taboos and couldn't face another struggle.
Home from the hospital, my newborn son in one arm, I mixed formula at midnight, filling the bottles and waiting an eternity for them to sterilize and cool while he cried from hunger and my swollen breasts leaked milk, an early lesson in the school of maternal guilt. What's more, I was sure he’d be forever haunted by a phantom twin wrapped in rough gray tweed and radiating cold, the ice bag pressed against one breast while I held him against the other. The insanity of that night didn’t end when his bottle was ready. The sound of his sucking made my milk let down, filling my breasts and overflowing onto blankets, baby, nightgown, and ice bag.
“Why would you want to do that?” The question barred me from the gates of Eden, seraphim with flaming sword. I didn’t dare put Lawrence to my breast; such was the power medical authority held over me, a rebel and newly minted Marxist in an interracial marriage. Not until my daughter Sunga was born nine years later and we could freely share that most basic of mammalian satisfactions did I grasp the hostility behind that question: masculine jealousy, possessiveness, and spite, wrapped in a tissue of scientific knowledge.
Consciousness has changed with feminism, but breasts are not yet neutral territory. By 1991 medical centers, hospitals, and insurance companies had strengthened their grip upon our bodies, and I knew I needed a community based upon a belief in wholeness and with the intellectual tools to back up this belief. I could turn to Frank, family, and old friends for support, and I was fortunate to be in an academic program that required me to learn systems theory and integrate it with holistic design. Healing began as I worked to integrate facts provided by cancer literature and oncologists with the moment of body knowledge experienced that night three years before when touching a lamb adrift within a ewe I saw my hand reach through galaxies.
* * *
Sunga called to see how I was feeling. We hadn’t talked since Thursday when the ringing phone caught me unprepared just as my husband and I arrived home from biopsy, dinner, and shopping. I’d told her then that cancer had been found. “Just a small one,” I'd said as I passed the phone to Frank. Today I can talk. I tell her I’m feeling better but glad I don’t have to decide yet between mastectomy and lumpectomy with radiation. “Next week I get to meet with the doctors.”
My daughter and I have years of phone calls behind us; we can picture each other’s faces; we’ve learned to read beneath the words and behind the silences. She wanted to see me but had neither car nor driver’s license then, and so the thirty miles between us could have been three hundred. Would I be at Al’s birthday party? I longed to see her but wanted some quiet time. “Let’s catch Mindwalk before the party, then we'll see.” She agreed to the movie, but only to please me. I felt a pang of conscience; there I was using cancer. I promised myself I’d watch that in the future.
Mindwalk, based on Fritjof Capra's The Turning Point, was filmed at Mont St. Michel, a rock and a fortress, its spire rising through morning fog, floating above a salt marsh where sheep graze between high tides. The Mont has more body, more particularity than the script provides the actors. Like characters in a morality play, they could have been named for the categories they represent: the Politician, the Poet, and the Physicist. Liv Ullman, as Physicist, fills her role with life, not an easy task throughout long speeches about Descartes' dream, the myth of pure science, and the threat to life it poses. She explains the nature of an atom in which only shells of probability maintain the solidity we expect of the material world. “The essential nature of matter lies not in objects but in interconnections.”
The Poet, seated at an organ, strikes a chord—the metaphor. The Politician asks, “But there are boundaries, aren't there? Between you and me for instance. We are two separate bodies; that's not an illusion. Is it?” The Physicist replies, “Yes. At the subatomic level there is a continual exchange of matter and energy between my hand and this wood . . . and even between you and me. I mean a real exchange of photons and electrons. Whether we like it or not, we are all part of one inseparable web of relationships.”
A compelling argument? Yes, and no. It requires that the hearer place the conclusions of physics above those drawn from direct experience. It brings us full circle to acceptance of a superior authority, in this case scientific rather than religious certainty. The film tries to move past this through conversation. But it struggles against its own design, set up to talk about rather than to show interconnectedness.
The Poet says, “The stones speak. I am silent.” He isn't though; he has much to say—his own words, Pablo Neruda's words, William Blake’s words. But the stones do speak in one of the last scenes. The Physicist and her daughter share a moment of silent communion as they rest against sun-warmed stones. “What next?” asks the daughter. “We go home,” answers her mother.
When the lights came on, I asked Sunga if she liked the film. “It was okay,” she said, “but I’d rather read the book.” Not a flip pronouncement, one to accept literally, so I’ll bring her Turning Point the next time we meet. I’d much rather carry her off to Mont St. Michel.
I did go to the party, a mistake. I couldn’t connect; unwilling to tell anyone about the biopsy or its result—still it hung like layered gauze, separating me from my friends. I talked with Karl (our youngest son) about his job. I ate a bit, drank a glass of wine, and left after an hour. The exchange of photons and electrons was too much and not enough.
* * *
Frank was still away in Portland, so after contemplating my life I phoned my friend Sue in Berkeley. She’s an old hand at dealing with mortality, her own heart damaged by rheumatic fever in childhood and her husband’s health deteriorating from congestive heart failure; in many ways our friendship has prepared me for living life fully and without any guarantee that tomorrow would be a continuation of today. Not that she doesn't make plans. Sue is an inveterate planner, so together we went over my next steps while I took notes and made lists on lined yellow paper.
* * *
If I don’t change I fear I’ll die; apparently breast cancer is systemic. If I do change I may die anyway. Survival percentages dwindle with each five-year increment, but all treatment, except hormonal tinkering, takes place in the first year—until recurrence. Besides, not to change would be a waste of this disease, a conscious deafness, a rejection of opportunity.
I’d been doing my homework using the Renneker text Miriamma brought me, trying to understand the pattern of cancer growth.
The Internet existed in 1991, but the World Wide Web had yet to appear; Mosaic, the first graphical Web interface, wasn’t even a gleam in its fathers’ eyes; and the hundreds of cancer websites within reach of my home computer hadn’t yet been built. In 1993, with the introduction of Mosaic, the WWW expanded by 341,634 percent. Now, with so much territory to cover, I find myself hastily browsing the web and swallowing scraps of information whole. I suspect that others do the same. Indeed, texts on web design warn that we are a hasty people.
Sheep provide another tempo though. Each morning I look out upon the pasture from the kitchen window and watch sheep chew at leisure grass swallowed in haste. And in Bali we learned to walk more slowly, taking our time to get from here to there. So I’ll move slowly as I recreate my journey through cancer.
I read that the causes and forms of cancer are myriad, but the same process—the unchecked growth of mutated cells—describes all cancers. Because cells have the ability to regulate their own growth and to self-destruct if their code is damaged, cancer research at the cellular level has sought to identify genes that in some way fail to properly repair or regulate the growth and replacement process of a particular type of cell.
Cancer provided an illustration of the lessons learned when I studied ecology. All forms of life have the ability to grow beyond the carrying capacity of their environment, but most—and cancer is one of the exceptions to this rule—limit their growth (not a conscious choice) and don’t deplete resources crucial to survival. Life forms are cybernetic systems, with the ability to receive feedback from their environment and regulate their growth to expand with plenty and contract with scarcity. Maples lose their leaves and bullfrogs snooze through winter. Ewes given extra feed before mating are more likely to bear twins. Seeds lie dormant in the desert until a good rain falls. The time between signal and response varies widely, and sometimes the message is harsh, but the ability to adjust and adapt is characteristic of living systems. When a life form is unable to respond to news of difference that makes a difference, its future and the future of its offspring are at risk.
Life form? That was me they were writing about! That made my attempts to apply systems theory, ecology, and biology to the growth of cancer cells more urgent and much less abstract. The growth of cancer cells is not unregulated, but the checks to growth coded into the cell before its genetic information was damaged no longer work. The new cell replicates and spreads by its own rules. It has lost the exquisite responsiveness living systems have to their environment. If that was all there was to the story of cancer I wouldn’t be writing this and you wouldn’t be reading it. Life on this planet would have hit an evolutionary dead-end long before humankind arrived on the scene.
I read that the body, my body or yours, has its defenses and that these are usually alerted when one of our sixty trillion or so cells is damaged and fails to self-destruct. I was willing to take these words on faith; I wanted to believe that in the deeps below consciousness my T-cells stood ready to be mobilized. The experiential evidence for believing that cancerous cells are recognized and cleaned up by our immune systems is that so many of us live and live long without cancer. Each cancer grown large enough to be identified by doctor or patient represents an immune system failure. If the immune system didn't work as well as it does there would be no humans to study its working. If it were infallible there would be no cancer found, and so no puzzle to intrigue researchers and writers on both sides of the divide between the speculative and often invisible worlds of science and of spirit.
But cancer is found, cancer had been found in my right breast, and the question was and is: what can stimulate, strengthen, or replace the functions of the body’s system of defense? Outside the body, within the laboratory, scientists study the action of the cells that make up the defense system. Outside the lab there's no way to study immune system responses to cancer cells in the earliest stages, so attention is focused instead on cancer patients, those that survive and those that don’t.
Some studies have searched for patterns common to those patients who live, or live longer, despite grim expectations. Each of these patients is an exception, a point that appears outside the general curve of statistical probability, and so such studies have inspired a flood of cancer support and self-help books, groups, tapes, and workshops. The flood was just a modest stream in 1991 when the biopsy revealed cancer in my right breast. There were crossovers between the accepted cancer treatment of surgery, chemotherapy, and radiation (slash, poison, and burn we call it to convince ourselves we’re tough) and complementary approaches such as meditation, visualization, psychotherapy, nutrition, and acupuncture, but most doctors viewed self-help books and support groups with suspicion, preferring that their patients limit their reading to pamphlets published by the American Cancer Society.
* * *
Assignment for Tuesday's Integrating Seminar: moments or occasions of integration. Slowing down as a means of integration, telling of last week's return to consciousness as a story, letting shape and momentum carry me past questions of when and what sort of surgery. Then connecting this with another time of immobility, on crutches at the Lake City library, waiting for Frank to pick me up after a rehearsal, and so happening upon these lines from William Carlos Williams’ Paterson: “To make a start/out of particulars/and make them general, rolling/up the sum, by defective means—/Sniffing the trees,/just another dog/among a lot of dogs.” Integration because of particulars: the three-legged dog and me with my crutches. “The rest have run out—/after the rabbits.” Details rather than words about, the right poem at the right time. Williams—I'd read him before, but he hadn’t spoken to me. I had to be slowed down by outside forces, crutches or anesthesia, to be less hasty, to pause.
“Pelan pelan,” Dira cautioned us in Bali as he led the way along narrow dikes between rice paddies.” And Trudi, Janice, and I followed along—slowly, slowly. I’ll move slowly this week, no hasty decisions, sniff that tree and let the rabbits take care of themselves. And I remind myself that Williams practiced medicine.