The Ecology of Cancer, and What do Ants have to do with it?

Ants are like cancer cells. Conversely we might say that cancer cells are like ants.

Even though they sometimes feel more mammoth-like and slothful, lumberingly prehistoric rather than tiny and socially frenzied. “They feel.” Of course cancer cells do not have feelings so far as I know. What I mean is that they feel to me, these colonies of CLL cells that circulate through the bone marrow and the blood and the lymphatic system, they feel to me massive and heavy and slow. Or more accurately, they make me feel like a sloth, I imagine myself as one of those creatures I saw a few weeks ago in the Tar Pits in Los Angeles: slowly dragging my massive body over the never-ending earth. But in the last few weeks I have also been having nightmares, dark and jagged dreams in which a massive sloth-like creature is out there, lumbering over the horizon, coming closer, filling the screen, threatening to engulf me. This CLL beast exists, I guess, both within and without.

When I heard Deborah Gordon declare that ants are like cancer colonies I experienced a rush of resistance. I did not welcome the idea of analogizing my condition to a common-and-garden insect that lives in colonies, rather than to the singularity of an exotic species of mega fauna now extinct. I was alarmed not charmed by the image of colonies of ants scurrying around in my body. But also in some peculiar way I did not yet quite understand, this analogy—of cancer cells to an ant colony—struck a chord. Suddenly a new image, one not immediately accessible to my habits of thinking and feeling, began to reverberate.

Ants, the ants that I know, live in my garden, not in my body. It has always been mysterious to me the way ant colonies would spring up in the garden, how they would know where the aphids were congregated, how they would march and scurry from their nests to my favorite rose bush, devastated by a colony of aphids. Aphids are small insects that suck the life out of plants and then secrete a sugar-rich sticky honeydew that ants love. In fact they “farm” the aphids, protect them from predators and parasites and nurture their eggs. In the face of this alliance—a mutualistic relationship or type of symbiosis—I would feel very small and ineffectual. All I could do would be to hope for an invasion of ladybugs (to eat the aphids, and thus deflect the ants) or I could spend hours everyday hosing off the aphids with jets of water. Sometimes you would sink a pitch fork into the compost pile and as if from nowhere a black mass of moving matter would crawl up your arm. After initial panic—rushing around dementedly shaking arms, trying in a frenzied manner to brush the ants off—I figured out that in the process of pursuing their own ends, foraging for fabulous stuff to take back to their nests, they were doing me a favor. Like worms, they were doing their bit to toss and turn and hasten the process of decomposition in the compost. In the end by leaving things be—as much as is possible for a neurotic controlling gardener—the garden settled into its own ecology. Or rather, it became more possible to observe the interaction of plants and creatures. To see, for instance, which plants attracted bees and when. African blue basil and rosemary are bee magnets. The weedy fennel, when it’s younger is a host for the swallow tail caterpillar that turns into a spectacular butterfly, flits around the garden and then sashays off to Mexico. Later, when the garden is festooned with the fennel’s yellow umbels the bees come swarming in.

But the story is not so simple, not such a paean to natural balance and harmony.

Enter the chickens.

Nowadays there are no infestations of ants, no plagues in the garden. The beak of a chicken and a squirrely squirming ant—these things exist together in a powerful force field of attraction. Heaven if you are a chicken, pretty dismal, I guess, if you are an ant. Though maybe the ants have just changed their habits, become invisible to chicken and human eyes, or moved on over to my neighbor Mrs Tam’s garden. Chickens also love worms, but since the birds are surface scratchers and since the vegetable beds and the compost are barricaded the worms survive there, in fact they survive everywhere deep in the soil, doing their work, sifting and turning.

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Ants are like cancer cells, says Deborah Gordon, in so far as they are regulated but without central control.

An ant colony is regulated, its survival depends on the distribution and co-ordination of tasks and roles. Communication, or an exchange of cues, exists between the ants. The tasks and roles themselves are not fixed, but shift and change as the environment shifts and shapes. The ants exist in a dynamical social network. A hub may form for instance simply by ants moving into a space where there are lots of interactions. Gordon calls it the anternet. Ants do not always behave the same way. Foraging behavior for instance changes in times of drought. If one element changes (e.g. the availability of water) then the behavior of the colony changes. These changes, in turn, shape social and reproductive patterns. By observing these changes in patterns of behavior or modes of regulation, scientists can observe how natural selection is working on this colony.

There are many biological systems, apart from ants, that function without hierarchy. Bird flocks, without a leader, turn in the sky, fish schools swerve to avoid predators, tropical forests develop patterns of diversity… and cancer cells mutate and metastasize. For all of these systems, we still don’t fully understand how the parts work together to produce the dynamics, the history, and the development of the whole system.

It has often felt to me as though the garden is a battlefield. The march to the rose bushes and the swarming in the compost bin seem to be ant maneuvers carried out with all the efficiency of military campaigns, masterminded by some center of control (and sometimes the body too feels like and is popularly conceived of as a battle zone where the war against cancer is waged). Indeed this is how the great and pioneering ant scholar E.O. Wilson described ant society—in terms of hierarchy, conflict and regimental organization. So why should we relinquish this view (or feeling) in favor of the model proposed by younger scientists, including Deborah Gordon? Most significant for me, in terms of the efficacy of the analogy, is that Gordon and others tell a different sort of system story, emphasizing situated (therefore variable) processes of recognition and response. They understand the ant colony as composed of flexible units (whose functions change according to situation) and propose a system characterized by different architecture and components. Nodes of interaction are at the heart of Gordon’s model and frequencies of interactions at nodes are what shape material social orders. It is this that grounds the argument against the way that Wilson’s analogy works, wherein the behavior of ants is offered as a sociobiological model for human behavior. Ants, Gordon argues, don’t provide moral lessons or insight into behavior or feelings, but they do provide insight about the dynamics of networks, systems without central control.

It’s a tricky business, this maneuvering (is it a dance or a battle?) between feelings and conceptual models, between the garden and the body, ants and cancer cells. Sometimes new images, just as much as new data, can interfere with feelings and reorient one’s thinking.

What matters in networks is the ecology of the system.

So, taking our cue from ant colonies, how might we think about the ecology of cancer? What are some of the ways that cancers diversify and spread? How is organization regulated? How, with answers to some of these questions, might we approach intervention in ways less dramatically belligerent?

Cells in the body act collectively—for example, as networks of neurons to produce sensations, or as patrolling T-cells that mobilize other immune cells to respond to pathogens. It seems they communicate with one another. In the process of metastasis, the cancer cells may use signals from healthy tissue to recruit other cancer cells to a new location, where certain areas of tissue constitute an attractive resource. If researchers can figure out how cancer cells are recruiting then maybe they can set traps to prevent them from doing this.

All very well, but it doesn’t solve my problem (and my oncologist’s) which is how to understand the malignant cells of my cancer, Chronic Lymphocytic Leukemia (CLL), as part of a cancerous system, given that it is a cancer of the blood not manifested in solid tumors. In CLL the cancer cells (malignant B cells, a type of white blood cell) course through the marrow and travel through the blood and lymphatic system. What happens in a “normal” body is that the B cells are recruited to fight infection, they die off often and regularly and new ones grow. In CLL, because of some genetic glitch, they don’t die off but in fact relentlessly proliferate, interfering with and crowding out the production of healthy white cells, red cells and platelets.

Although the cancer is in the blood and not localized in tumors the cells do cluster, they form hubs just like ants. They cluster in lymphoid tissue. Research has identified a form of regulation in this lymphoid tissue, or micro-environment, whereby malignant B cells communicate with other healthy cells. Curious about the relation of the cancer cells to certain healthy cells Dr Kipps and his colleagues looked at this relationship in the lab. They found that when the CLL cells were removed from the “suspicious” healthy cells, the CLL B cells began to die, whereas the same cells, when replated back onto the healthy cells, perked up immediately. Because they supported the survival of CLL cells and because CLL B cells became attached to them, the researcher group called them “nurse-like cells,” or NLC. They concluded that one of the ways CLL cells survive is by recruiting these protector cells.

Dr K describes CLL as a very social beast. By this he means that the survival of the cells depends upon a network of relations, which indeed amounts to a form of regulation, without central control. The relation between the NLC and the CLL B-cells is symbiotic just like that between ants and aphids. In a dynamical system like an ant colony it is possible to observe how when one element changes (e.g. the introduction of drought) the behavior of the colony changes. So, similarly, by focusing on the microenvironment of another dynamical system – a colony of cancer cells – it becomes possible to envisage forms of intervention more akin to the strategic introduction of drought, rather than war. Rather than therapies which are the equivalent of carpet bombing, indiscriminately destroying good blood cells along with the bad (which anyway doesn’t work with CLL which is notably resistant to standard chemotherapy), the solution might be to try and intervene in the signaling system to change the behavior of the cancer colony. Or, as Dr K puts it: to foster therapies that isolate the CLL cells so that they die of social neglect.

To observe how cancer colonies evolve, how cellular activity is regulated, how selections are made: this chimes with other ideas vibrating in the air in this second decade of the twenty first century when the Darwinian inheritance is being reconfigured. We humans have made such a mess of the planet that perhaps our only hope lies in attending more closely to other forms of organization, to looking more closely at ants and fungi and chickens (with whom we share about 60% DNA) and extinct species like the sloth from the Paleolithic era to species like bees that are disappearing by the day, as we poison the environment and our own bodies. By looking outside the human body to other “bodies” or clusters of living cells in the natural world it seems to me that we have more chance of figuring out solutions, or ways of being in the world, perhaps even ways of living with cancer rather than definitively conquering it. Just as in certain approaches to invasive species in habitat studies. It’s a reversal of the gaze or perspective. Rather than trying to understand the natural world through the lens of human society, we reverse the perspective so that a description of a natural society—an ant colony in this instance—can illuminate how we think about modes of organization in the human body. Or, more pertinently (since reversals always carry the dangers of dualism) we can begin to think of the nature-society play as itself like an ant colony.

I don’t for a moment think that Dr K and co are spending their time out in the desert down on their knees observing the behavior of ants. They are in the laboratory working late at night, separating the malignant B-cells from their nurse-like protectors and replating them, and trying to figure out how to intercept the signals. They are running algorithms. In defining the various cells, structures and molecules that protect the CLL cells they are working on the development of novel anti-leukemia agents such as monoclonal antibodies and immune-based treatment strategies and genetically engineered T-cells. No, they are not looking at ants; but for me, as a gardener and a non-scientist and someone with cancer, bells start chiming.

In writing this I have become less alarmed by the ant analogy, more attuned to the reverberations sparked by hearing Deborah Gordon speak. At some point analogy clicks and opens up a different link. A link to the ecological.

Even though he places emphasis on the environment Dr K is cautious: We still don’t fully understand how the parts work together to produce the dynamics, the history, and the development of the system, he says. There isn’t a single explanation for how CLL happens, let alone how it evolves, adapts, transforms. Unpredictable things happen. Needless to say there also isn’t a single solution.

Nevertheless, this perspective gives me hope. Not that a cure for CLL will be produced tomorrow, but certainly that more efficacious and less damaging possibilities are opening up that might prolong the life expectancy of people with CLL (so far this has not been possible). The outlook is considerably brighter than when I was first diagnosed six years ago.

It fills me with energy and hope: that this research can be understood in terms of a larger project, within an ecological matrix encompassing micro and macro environments, time scales ranging from the big bang to now, symbiotic relations as apparently diverse as the relation between ants and aphids in a garden and malignant B-cells and nurse-like cells in a CLL environment.

It gives hope when things are going well (like now, when treatment is resting in a sweet spot). Not when you are teetering on the edge of a chasm filled with black rising sludge and you see death edging its way up out of the tar pits toward you, like a massive land sloth.

In the dark times it is the sloth that imaginatively materializes, rather than a colony of ants. Although the ant analogy has greater scientific resonance, the sloth connects affectively to my bodily experience. But in the process of writing this piece I have relinquished the idea of ants scurrying around inside my body, am more able to situate ants and cancer cells in an analogous relation, within the framework of dynamical systems. This I realize: it is not necessary to feel ant-like in order to grasp the import of the analogy. You might say my cognitive apprehension has marginally improved. On the other hand, it is only through sensation, through ways that the body experiences being in the world, being in the garden as well as in the hospital and the lab, that understanding grows. Figures of speech, often fantastical, may seem to be at odds with scientific data, but the human sensorium involves a rich patterning of signaling networks. The connections between science and imagination are myriad and marvelous.

 

Notes

“Ants are like cancer cells”…….. Deborah Gordon in her talk “The evolution of collective behavior in ant colonies.” at the conference, “Anthropocene: Arts of living on a damaged planet,” May 8-10, 2014, organized by Anna Tsing at the University of California, Santa Cruz. Her writings include Ant Encounters: Interaction Networks and Colony Behavior (Primers in Complex Systems) and Ants At Work: How An Insect Society Is Organized.

“the researcher group called them “nurse-like cells,” or NLC”….. “Blood-derived nurse-like cells protect chronic lymphocytic leukemia B cells from spontaneous apoptosis through stromal cell–derived factor-1”

Jan A. Burger, Nobuhiro Tsukada, Meike Burger, Nathan J. Zvaifler, Marie Dell’Aquila, Thomas J. Kipps,  Blood. Oct 2000,96(8)2655-2663; http://bloodjournal.org/content/96/8/2655?variant=long

“chickens (with whom we share about 60% DNA)”….. NIH 2004 News Release. “Researchers Compare Chicken, Human Genomes: Analysis of First Avian Genome Uncovers Differences Between Birds and Mammals” National Human Genome Research Institute. Last Updated: November 17, 2011http://www.genome.gov/12514316.  Accessed May 15, 2014.

 

 

strawberry/fetish

Last night (wed 24th april, 2013) was a party to celebrate Milane who died four nights ago. She loved a good story, a wicked joke, a gathering of friends. And so we gathered, a small party hosted by Nina MacConnel and Tom Chino. All of us shell-shocked, seized in passing moments by grimness, but mostly there was conviviality and the sharing of food and drink, particularly gin and tonics, Milane’s favorite.

There was a gift for each of us. Before she died Milane sorted through her photos and there was a little bundle for each of us with our name on it. Moments forgotten: Memories returned. There I was in a celebrating group at a Christmas party at Bookworks, the bookshop Milane once owned, there in the Getty Villa garden, a trip made when the renovated Villa opened. At book signings. When we left the party that night Tom and Nina gave each of us a large white paper Japanese lantern to take home and light for Milane.

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 In our garden, hung on the fence where apples are espaliered, close to the chicken run, the lantern has refused to stay put. It dances wildly, a white ghost cavorting in the dark swell of the night.

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Milane had a gift for gift giving, and an eye for things. She took great pleasure in choosing just the right thing. Around my garden there are various Milane manifestations, but the one I love the most is a cement dove, a garden ornament migrated from another era, cast aside I imagine at some swap meet where her anachronistic beauty caught Milane’s eye. I love to hold the dove, her solidity fits perfectly into the shape of a hand, her lines are simple, her proportions just right. I knew Milane was dying when she gave me a clay icon of Ganesha that she had brought many years ago from India. She told me that his dharma is to place and remove obstacles, and also that he is honored at the beginning of rituals and ceremonies and invoked as the Patron of Letters during writing sessions. As part- Elephant he likes to eat flowers, fresh ones every day, she told me. At first, and for a while after Milane died, I did make an offering everyday of fresh flowers, but the punctiliousness of the habit has waned, the offerings sporadic and whimsical. Like my efforts at writing, at meditation.

The dove sat for several years on a rock in the white garden (so grandly named, more for aspiration than actuality, all kinds of colors creep in, some muted, others garish like the scarlet and orange nasturtiums). Then came the chickens. In their frenzied searching for bugs, in their rampaging destruction, they knocked the dove to the ground and she broke in two. Distraught, I was ready to send the chickens to the pot. But Milane cocked an eyebrow and laughed. We jambed the two pieces together and wedged her high up in a corner of the bower where the grapes and wisteria grow. In summer you cannot see her, but she is there, and in winter when the foliage dies back, when the garden mutates, you can see her there, up high, looking down at the chickens.

Nina’s chickens were asleep that night, the night of the party. I imagined them dreaming of Milane, carousing together in their sleep, a communal feathery dreaming. I hold Nina responsible in part for the coming of chickens to Herman Avenue. Steve, sensing a whiff of chicken desire in the air, had been waging a gentle campaign that began by the mysterious monthly appearance in my letter box of Backyard Poultry. Gorgeous full page spreads of birds: the silver spangled Hamburg, white feathers adorned by black crescent and V-shaped spangles; the Bearded Buff Laced Polish, creamy white and golden buff laced together, sporting an extravagant feathery top knot; The Mottled Houdan Bantam – lustrous greenish-black feathers, with one of every two or three tipped in white. My dreams were infiltrated by Porcelain Bearded d’Uccle Bantam cockerels from Belgium, Black Breasted Red Aseels from India, and Old English Creoles. And then, almost every time I saw him, Steve would suggest that I visit Nina and take a look at her chickens. So eventually I succumbed and Nina invited us to lunch. Us was me and Helen Barnes. She and Jeffrey were continent swapping: while Jeffrey was visiting Australia she had travelled from Melbourne to keep me company in San Diego. I had a bone marrow biopsy scheduled for that morning and had forgotten what an ordeal it can be (forgetting is part of the game, selective memory a survival device). It took a long time and then there were all sorts of bureaucratic hospital diversions and waiting and waiting and waiting. So by the time we got to Nina’s—stopping by the farm to see Tom and gather some vegetables from the farm stand—it was long past the lunch hour. But the sight of the chickens was restorative, to see them roaming, pecking, zigzagging around, following one trail only to be distracted, tempted by a posse of insects over there, a potential worm in the woodwork over here. To examine their coop, how the perches were composed and food distributed, how their shelter organized—all of this was inspiring.

And then there were the eggs. The eggs did it. Helen and I watched spellbound as Nina conjured from the eggs an omelet, so effortlessly, breaking the eggs with one hand, flicking a wrist and twirling a fork and then on our plates: yellowness, the taste of yellow in our mouths.

The transmutation of matter. How an egg becomes something else. You look at an egg, there it sits on the kitchen counter, self-contained, perfect in its ovality. Perhaps it is a deep speckled brown, maybe pale blue or green. When you crack the shell, break the oval perfection, you release into the world a magical potential.

At the party on the 24th of April I could not eat much. Nausea was settling in. Stomach cramps. I could not resist Nina’s couscous and Tom’s vegetables, the mellow spices that tickled the tongue but did not obscure the taste of Chino carrots and peas and fava beans. But when it came to the desert I could not manage a single spoonful. I was sitting next to John Alexander who was entertaining our end of the table with hilarious stories of gardening mishaps. At one point he looked quizzically at me and said “what about strawberries. How do you like them?” Oh I like them I said. “How about I bring you a plate just of strawberries, no cake or cream?” It almost broke my heart to say no. It wasn’t that I didn’t want those strawberries that come from the garden of the gods. It wasn’t even that I couldn’t imagine the taste. It wasn’t that they made me feel sick. It’s just that there was a nausea right through me, not just in the stomach. John’s hilarious stories had made me forget for a while, or rather the story telling and ripples of laughter had absorbed the ukky sensation.

I do not think I would have felt this way if they were other sorts of strawberries. But Tom’s strawberries are something else. For several years the grad seminar I taught on Gardens and Public space, a peripatetic seminar, would visit Chino’s farm and Tom would fire up the tractor, load everyone on the trailer and off we would go on into the fields. But before that we would sit at the trestle table where the workers have their lunch and discuss the reading and someone would present a paper. And Tom would send out two large bowls heaped with strawberries. Sounds of ecstasy, inappropriate sounds of swooning. I thought then that you would have to be on your deathbed to ever refuse a Chino strawberry. In the field Tom would stop occasionally and encourage people to pick from the plants in the field, strawberries for instance. And he would talk about the culture of strawberries, the particularities of the plant, selection for this region, how they grow, how they need to be nurtured. I have pages and pages of notes from Tom’s field discourses. He talks too about water, where it comes from, the price of water in San Diego, this virtually desert region, how he uses expensive domestic water on the strawberries because the municipal farm water contains too many salts. You might think of this as coddling but Tom, I imagine, thinks of it as farming.

Farming is work, practical, you get up each day at 4 am and by the end of the day you have to balance the books. You have to weigh up what comes in against what goes out and figure out how to make a living. The process is practical yes, but there is something mysterious, alchemical about the way in which water—clear liquid that flows, that has no color—is transformed into scarlet heart-shaped succulence. Water, labor, knowledge:

The condensation of a process into a succulent jewel.

Clear liquid that looks like water drips into my veins during infusions and some kind of transmutation happens, equally mysterious to me. Even when you check the science it doesn’t all add up. Even the oncologists say, we don’t really know exactly how it works. Drip by drip by slow drip it disappears into my body. A week later my lab results change, many of the danger flags disappear.

Saying no to those strawberries last night at Milane’s party felt to me for a moment like the approach of death. I wanted to howl for Milane. I thought to myself: she would never have refused a strawberry. Her ALS, once diagnosed progressed fast, but she continued to party with friends, a few at a time. Not long before she died, when speaking was difficult, she wrote on her writing app (a version of an old W.C.Fields saying), “Who put tonic in my gin and tonic?”

A few weeks later. I am beginning to emerge from that nauseous miasma, there is a shout at the back gate, and there is Alex Kershaw, a graduate student from Australia. A little sheepish looking, the way Australians sometimes are when performing an act of generosity. A self-deprecating shrug that says, Oh it was just something that fell off the back of a truck. He is bearing a cardboard box, in which gleam vegetable gems: round yellow and green striped squash, purple cauliflower, candy red radishes, and strawberries, deep scarlet strawberries. Around the vegetables he has tucked a Humboldt Fog cheese, a slab of dark spicy chocolate, a pack of organic Yerba mate.

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Immediately I picked out a strawberry and bit into it. As that strawberry dissolved in my mouth, the juice dribbling down my chin, I knew it was a Chino strawberry.

The chickens, too, love strawberries. Though love is too tender a word to describe what happens when a chicken encounters a strawberry, and they are not particular, any strawberries from anywhere will send them over the moon. It’s the color red that attracts. Never go near them in open-toed sandals if your toe nails are painted crimson, or they will dive bomb, pecking mercilessly. They play dirty football with spoiled cherry tomatoes or mushy squished strawberries. We always keep the hulls for them, they go beserk when tossed the green bits with juicy red entrails slurping out.

Today, I will feed Ganesha some flowers. My daily ritual is to rise early, feed the cats, let the chickens out of their house as the sky lightens. They hear me approaching and set up a mighty hullabaloo, hurling themselves against the door and scratching at the wire window. As I open the door they come flying down from their roosts and cavort down the ramp, fluffing and huffing and preening. Then I make a pot of tea and bring it back to bed, set it over the tea candle warmer, and sip as I write on my magical writing machine, the Mac Air. This is a ritual. It sets me in motion for the day. Later I will meditate. Really I should start the day by meditating, but I’m greedy for writing opportunities, for using that early morning energy before it dissipates. As I describe this early morning ritual it takes on a life, seems orderly and calm. But the truth is there are many mornings when I can’t rouse myself, the chickens remain in prison, many mornings when I can’t get writing, read a detective novel instead, or feel sorry for myself, or find distractions like email or the newspaper which reveals all sorts of hyperlinks, passages into other worlds. And then of course there are too many other things to do and so meditation slips away. I’ll do it tomorrow…

Between habit and ritual a thin line: between therapeutic and spiritual practices, between the gracious and orderly lighting of candles and the compulsive repetition of obsessive desire, between routine and observance. Many ritualistic practices—from the quotidian and idiosyncratic to those more formally prescribed—serve to preserve the way things are, to protect us against change, transformation, difference, grief. And yet, and yet … there is always the possibility of something mysterious happening. Rituals might be ways of channeling and bolstering obsessive impulses, but also they are often mechanisms for structuring pathways and passages, for enabling transformation. Lighting lanterns to guide the dead in their journey, to ease the transition from one state to another, not merely for those who are passed but for those of us who remain. Making a pot of tea in order to write. Sometimes though the pot of tea is not enough. And so today I will feed Ganesha some flowers.

Gifts circulate, chemo too. And in the circulation: transformation. Of course gifts seldom come without ramification, and chemo comes with myriad fluttering strings attached. This we know. If I offer flowers to Ganesha it is in the hope that he will, in eating them, keep Milane alive even though she is no longer here. The flowers are at once food and fetish and gift, not unlike the strawberry. Superstition, ritual, faith. In offering Ganesha flowers, day after day (punctuated by desultory periods of neglect) I believe that the gods in general will be appeased. Of course I also hope that Ganesha in particular will preside over a writing session and kick my ass into gear.

Some Musings on Metaphor

A good month, June. Feeling considerably better, with miles more energy. It has been amazing to look at the print out of my labs the last few weeks. Bloodwork shows much improvement, many items that were flagged too high or too low have settled into the normal category. Looking at the results each week (they come up on the computer a few hours after the labs these days) is like watching a soccer ball, soaring in slow motion, peeking and then descending. Hold your breath: where will it land, inside or outside the line?

My white blood cell count fell into the normal range fairly soon after starting treatment. But actually there are many kinds of white blood cells, and there are at least two kinds that are crucial indicators for CLL, or since each case is idiosyncratic let’s say for me at the moment. My neutrophils are slightly low – most likely induced by the revlimid. If they go much lower it means likely neutropenia (when you are dangerously at risk of infection, when you have to eat only cooked vegetables and fruit, wear a mask etc …. everyone probably knows someone who has had cancer and endured a period of neutropenia, induced by the chemo) but so far very borderline. Then there are lymphocytes. In the last month the absolute lymphocyte count has normalized. Marlene Millen, my primary care physician, said no wonder you are feeling better, when your lymphocyte count is up its like you have a constant virus, you are fighting it, day in and day out. My first reaction was Whoa, what would you know what it feels like. Stick to science, doctor, don’t presume to tell me how it feels. A flashback to hot flashes and the gynecologist (young, compassionate, efficient, female) who said, just think of it as a normal part of life, everyone gets hot, I get hot sometimes, and I just take a deep breath and drink some water and it passes. Well bully for you lady, may you wake one day in your best silk blouse suddenly sweating swinishly as you address a room full of bright-eyed and bushy tailed gynecology students. A moment ago they were hanging on your every word, now their eyes are fixed on the sweaty stained blouse clinging to your breasts. But Millen is not that gynecologist. She is tough and vigilant and frank. She is also a go-between, mediating between the various specialists I encounter, ping ponging from one to another. She was the one who really kicked me into treatment the first time. Listen, she said, Kipps will always say “it’s maybe time to start thinking about treatment, here are the options, of course it’s your choice.” “But I’m not Californian,” says Millen, “and not afraid to cut to the chase. You have put it off for long enough, and now you are saying well I think I’ll wait a while. You really need to start treatment NOW.” She must be about half my age, but she calls me “Sweetie.” “Well done Sweetie,” she will say when she thinks I have conquered the denial impulse and recognized some danger signal and given her a call. I find it very endearing to be called Sweetie. Bitter sweet like the Jane Campion movie.

Friends are curious and always asking: what is it like? Much of the time we look quite normal, when you go the CLL support group you might think you were in a room of perfectly healthy people, the swollen lymph nodes and spleens are not visible, nor the haywire white blood cells, cavorting platelets, nor the havoc being played in bone marrow. Nor the sense of utter exhaustion and fluishness. People often say to me “how are you? You look great!” On bad days this can be a trifle irritating, because typically they ask a question and answer it themselves, pronouncing you well and fine. This was a refrain after my dance with death just before our Boxing Day party, though on this occasion not in the least irritating. Boxing Day is the day after Christmas and this last year it was also the day after I came out of hospital. The cause was an infection that went haywire over night, landing me in the ER. Four nights in hospital and then I was fine, immensely relieved, and we went ahead with our Boxing day tamale party. Teddy Cruz gets the most delicious Guatamalan tamales from a source he refuses to reveal. They are wrapped in banana leaves and steamed. Unwrapping is at once a delaying mechanism, a stringing out of anticipation, and a process of revelation. As you unwrap the smells start swirling, not just one smell but many. The masa (or corn dough) inside the banana leaf wrapping is in turn wrapped around the filling—pork or chicken—and a sauce that is beginning to ooze out so you have to lick your fingers to get a taste of what is to come. You pause, fingers in your mouth, imagining. And then you break into the tamale. Inside there is pork and a piece of fruit, and even though there is a melting moment flavors are distinct—sharp, sweet, meaty. You scoop a bite of tamale into in your mouth, and enter heaven.

I have never met this woman who works in her kitchen at home and conjures these magical tamales into being. Teddy is the go-between. But I do know something about her. A week before Christmas her husband, who had been living and working in San Diego for years, was walking along the street not far from our house when a Homeland Security van pulled up and stopped him, requesting his papers. He had none. He was pulled into the van and deported from the country.

Although I sometimes find the “you look great” refrain irritating, receiving it as vacuous routine politeness, actually I know that when people say this they are more often than not performing an act of sympathetic magic: they are wishing that all is well, they want you to be well, they want to believe that everything is fine. And you participate in the performance. You are relieved to be alive and want to look as normal as possible. On Boxing Day I was particularly glad to be alive and celebrating. But the scary thing is the knowledge that it could be something like this that will take me out. Most CLL deaths (because CLL is a disease of the immune system) are from simple infections that flare up quickly and can’t be controlled. This is what Millen has always been trying to impress upon me: be alert to the signals, act immediately, don’t be so cavalier. She was pregnant and on leave when this happened, but when she came back she said, “Well done Sweetie, you got yourself to ER in time.”

Millen offered the metaphor of living with a virus. There is an aptness to it, it’s graspable, something one can offer to others. Kipps offered another. After my first treatment I said to him It’s like a miracle. I had no idea how awful I had been feeling. For years. This is the real normal and it’s a great sensation! Kipps said many patients say exactly the same thing. And he offered a metaphor: it’s like hiking up a hill with a back pack on your back. You start with a few pebbles in your back sack and after a while you add a few more, and then after another few miles the gremlin at your back tosses in just one more stone, but this one is a little larger, heavier. And so it goes, and as you climb you accommodate to the weight and the difficulty, and you come to imagine this as normal.

Rather than being affronted by Kipps’ simile, or his presumption in describing my sensations, I experienced a surprising sense of gratitude. His image was not exactly intricate or poetic, and certainly far from scientific. Perhaps though this is precisely the key to understanding how it works. How a simple metaphor describing an illness can spark delight. Why, I wonder. Clearly, on one level it’s because of recognition. It offers a mirror image, a confirmation of identity. Thus, it might be argued, it doesn’t do much to shift anything, simply confirms the way things are, the way you feel. And although I hate the kind of feel-good triumphalism that validates every feeling as evidence of self-worth nevertheless I think there is something crucial that happens when the language of medicine or science is blurred by the poetic impulse of metaphor. Many illnesses, particularly chronic ones, as well as many psychological states, are isolating, for the patient it’s hard to situate what they “feel” as anything other than ultra-personal. There are times when you think maybe it’s all in my head, or maybe I am inducing this illness because of the way I feel. So to have an image flashed up, from elsewhere, from someone else, that is evocative and feels accurate – this is like getting a hit of immunoglobulin. You want to shout out Yes! That’s it! Something surges through your system, is energizing, and it isn’t a drug. This kind of metaphor differs from the destructive metaphors that Susan Sontag so brilliantly described in Metaphor as Illness. Metaphor literally means a bridge between two things, two words, two images. The more unlikely the linkage the more powerful the metaphor, and the more it can be spun out the greater its capacity to inspire intrigue and wonder. But in addition to confirming the way you feel, metaphor has the potential to perform an intricate dance of difference. There is always that space of difference, of something incommensurate that stretches between the two unlikely images. A patient is and is not a hiker. In that tension, in the surprise, in the fact that the image flashes up from elsewhere – it is in this process that metaphor has the capacity to open your eyes, to introduce not just sameness and recognition, but newness. The drugs serve to lighten the load, but words too.

Newness and surprise are great medicines.

Much of the time I swim through Kipps’ language, feeling an idiot because I haven’t done my homework and there is still so much I do not understand, and sometimes despair that I ever will. And there’s not much time. And how will I ever make the right decisions about which therapy if I’m so clueless? He has a lot of patients to see on this one day of the week when he isn’t doing research or flying around the world talking about CLL. Often I call up Sheila Hoff, our CLL nurse and case manager, and she patiently spends hours going over it all, translating, helping with decisions by giving examples, and always she says, think about what kind of a person you are, how you want to live your life, which treatment will suit you best. Or I turn to a patient advocate site on the internet, like that of Chaya Venkat. Sadly she has announced this week that she is retiring. Her husband died of CLL. Though not a medical doctor she is a science writer and she started the site (http://updates.clltopics.org) to link her husband’s journey with others’, to mediate between the scientific community (and scientific language) and patients. For twelve years (eight while her husband was alive, four after, by herself) she has done a quite amazing job as a patient advocate, and as a magician of words. Understanding the language, yes, but something more. Finding the words. Saying the words. Her retirement blog is very poignant.

When I was looking for good crime novels (when not?), the kind you can lose yourself in, Patricia Montoya, my friend and neighbor (who has herself recently been through hell, survived a rough stem cell transplant, now back for the summer in her bitter-sweet home, Medellin), suggested I read Tijuana Straits. It’s a surf noir novel set primarily in the Tijuana River Valley, the area that stretches from Imperial Beach in the northeast corner of the Valley (and the US) along the border with Mexico. Twenty minutes from where I live. It begins in the Estuary, with the main protagonist whose charge is protecting certain migratory birds (most notably the western snowy plover and the light-footed clapper rail) discovering in the early morning dawn a woman in distress, who seems to have crossed by an illegal route where the border fence cuts the valley in half. Kem Nunn evokes the area vividly: the crashing surf, the Lighthouse in Las Playas on the Mexican side of the fence, Yogurt Canyon, Smuggler’s Gulch, the routes through the Valley on this side – Monument Road at the edge of Border Field State Park, Hollister Drive, Dairy Mart Road – and the maze of dirt roads and horse trails. I started reading the novel after a particularly hairy infusion, and experienced a peculiar delight in recognizing these places, even seeing these names in print, saying them out loud. There is the comfort of familiarity of course, but also there is always a slight, maybe infintesimal, mismatch between the image offered and your memories. There is a pleasure in puzzling out how the images cohere, form a landscape, in imagining even when you can’t be there. Nunn wrote this novel shortly before Homeland Security hacked into the landscape in 2003 so brutally, demolishing a mesa, filling in a canyon and building a new, second wall flanked by a perfectly asphalted wide road, a road where no one drives except the occasional border patrol vehicle. So sometimes he describes a landscape I hardly knew, and I try to conjure it, ripping out the new steel fence, and the asphalt road, and restoring the canyon in my mind.

You picture and imagine a landscape, a configuration of space shadowed always by various histories, some quite personal others social, unfolding oblivious to your personal existence. It is like this too with simple metaphors, thrown up in the haze of misrecognition, when you do not know how to make sense of this place where you find yourself.

For me the Boxing Day party was a celebration of being alive, of having escaped again, of friendship. The house was packed, the air was festive, people drifted in and out of the garden, unlikely people became entranced by the chickens and entered into chicken conversations. The tamales, however, as well as being delicious were a reminder that cancer is a card you can carry, it’s like having papers, if you are lucky enough to have medical care people are basically on your side, they want everything to be fine, they want you to be well. Of course you live with the fear of sudden, or slow, death. But as people who have cancer and Buddhists and even total strangers with whom you strike up a conversation in the long queque at the pharmacy remark: we are all going to die, death is a part of life, and anyway who knows you might walk under a bus tomorrow. True no doubt. But it is also the case that many people in this country live without any papers at all, let alone a cancer card, and they live in real and daily fear of a chasm opening up when and if the Homeland Security van pulls up one day as they stroll to work, to the shop, to neighborhood park.