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.

 

 

Blown Through the Air

Falling asleep in the air, surfacing in San Diego, creepily hot in mid winter. The garden is confused: fruit trees blooming, lettuces wilting, chickens discombobulated, facing with befuddlement the question: To lay or not to lay today? today is it winter or is today not winter not today?

Leaving Australia as temperatures climbed over a hundred degrees. On the East coast of the U.S. in grubby smouldering cities where only sometimes snow flitters fitfully across the landscape there are four inches today.

Wild fires are breaking out in Australia and in California. How wild I wonder? Raging yes, but unrelated to the domestic?

It’s a bit like sex in the grass, breakfast in bed, says J, it sounds like a splendid idea. Nevertheless he brings me a tray with coddled eggs (Holly’s eggs: Creamy saffron yolks) demure in pastoral china, and a slice of toast festooned with two thick slices of Fat Dave’s bacon. Succulent, salty. Lula Mae stopped laying this week, the day that Holly started. They coordinate the rationing of human pleasure.

I have been a trifle chookless while travelling. Though In Hawaii at Hanauma Bay where I went snorkeling there were wild chickens on the beach. Not very wild, wild once perhaps for a while after escaping domesticity, now semi-naturalized on the beach, not exactly cuddling up but certainly making do quite well with peckings and pickings from human picnics. In Austinmer, on our way down to the beach for an early morning swim, Sarah took me by some chickens to whom she ritually throws her apple core, broken into pieces. In Melbourne each morning I would let Helen’s chickens, making an almighty ruckus as soon as light filtered into the world, out of their coop. After I left and temperatures soared she put ice cubes in their water and posted photos of them sheltering under the shade of the lime trees. And an image of the dog standing, just standing motionless, in the heat in the fish pond. Dazzle the water nymph, wrote Rosa.

So much to do. Pruning in particular—fruit trees, roses, grape vines—and searching for missing library books, buried under dust and piles of other books and mountains of accumulated fines. There is one I cannot find, Notes of a Native Son. I had begun to think of this book as mine I’ve had it so long, renewing it each year. Perhaps someone nicked it, or I left it somewhere like at the hospital or perhaps it has gotten mixed up with gardening books, I’ll check again today. Or perhaps not. When a book goes missing this is usually what I do: buy a replacement cheap and take it into the library, mock-mournful shame-faced, and the nice librarian Jimmy always says, you know we don’t do this you have to pay the fine on-line, and then he takes the book I offer and looks it over, quizzical, as though it’s a novelty for him and a vaguely wondrous event, to hold a book in his hands. And then he says, OK, this time, but it’s the last time. But this time I feel in my bones that eventually James Baldwin will turn up at home and I shall keep him, or it, that library book that has spent so many hours in my hands, made grubby with breakfast stains. After travelling with a kindle, its lightness—while in motion—has now become unbearable, hence this compulsion to pay the fine, as though then the book will materialize. Partly through superstition (paying the fine will magic the book into the world again; but also via an irrational though tenacious inkling that my heroic fine will keep the doors of the library open) I bow to institutional punishment; but I also bow down in homage to the world of books, of solid three dimensional sticky objects that sometimes carry you away on a fluid flowing stream, a river into which you can dangle a foot and despite what the philosopher says you can return and do it again and again it is the same river, you can find yourself again, albeit differently. Like Inside Llewyn Davis which we saw last night. That gasp of recognition as he encounters the man in the suit in the alley again, or is it for the first time, or the second time, and gets his balls kicked in. You think for a moment it may turn out differently, better.

In homage too to Baldwin. How he manages words and how they correlate or not with feelings and how feelings infiltrate and stoke the fire of politics. The fire. “Stranger in the Village” is, at any time and in any place even though of course time and place are specific and matter, an extraordinary essay, in its evocation rather than description, of what today is endlessly in so many contexts called “otherness.” A fire that burns through thickets of sentiment. Exile: what does it feel like, where does it feel, how to think it?

In Australia there is much provocation to think of exile and asylum. Thousands of asylum seekers confined in Detention camps, on and off-shore. One government after another, Labour included, passing the buck. A sticky sensation of guilt and shame adhering to my Australian passport.

But this sensation was not everything. The Australian sojourn was simply marvelous: a passport to pleasure. It came at the right time: Bondi Beach in summer, Fitzroy street, friendships renewed, gardens native and otherwise to walk in, long conversations, spicy Asian food, the bats the black bats swooping through an indigo sky, all this worked better than any drugs.

I got better and better. But was blindsided by others getting iller and iller. I guess this happens when you are away and return and see how everyone is older and not quite as young as we all once were. I felt a niggling sense of shame that I—who make such an habitual hue and cry about not-being-well—should be so well when others all around me were teetering like skittles, battling with demons of pain and separation, incomprehensible medical diagnoses and imminent death. I remind myself: there is no hierarchy of suffering. If I write in order to combat the feelings of isolation and uncertainty that chronic illness can foster, I write for other reasons too, some merely neurotic, some to do with the pleasure afforded by any addiction, and for some reasons (though reason seems far too grand a concept) to do with a sense that putting into words this thing called illness (yes I call it thus even though there are therapeutic regimes that advise rethinking it as “wellness opportunity”) produces a materiality, albeit chimeric and diaphanous, something that can spark recognition, something that can be passed from hand to hand, blown through the air or kicked from one place to another.

Well, that’s the hope.

I had an immunoglobulin infusion the day after returning, blood tests still looking good, feeling fine, but of course it’s a just a matter of time before the symptoms return. Kipps asked me if I’d finished the book. I think he does not know what a holiday is. Lucky for me he works so hard. As expected the ball is in my court, but the choice is more clear cut than often: Continue without drugs for as long as six months if this good runs lasts that long, or start back on a low dose of revlimid with or without the ritoxumab. Certainly I would opt not to do the combination. Too many infusions and all the stuff that goes with that. But Sheila, wonderful Nurse Sheila, said that it would be possible to do the revlimid off-protocol so I wouldn’t be tied down by endless testing and could arrange labs with her and be able to travel. It’ll cost something but not a lot. The simple truth is this: I don’t want to think about it now. Am going to put it off for a month but then will probably opt for what Kipps sees as a pro-active move and the possibility of staving off the next big treatment for longer.

In future posts I will sketch some vignettes of this Australian escape. For if obsession is potentially curative so too is travel. Obsession narrows the gaze and travel expands it. Though they are not as antinomous as it might at first appear. Travel, good if you can get it, is a way of interrupting and shaking the quotidian. Recharging and reshaping.

I take heart from Pamela Brown, ironically wry and curiously lyrical. In her latest book of poems, Home by Dark, which she gave me over cups of tea in a café at Edgecliff station, she writes

 Like Michael said,

Now we’ll spend

The rest of our lives

Watching our friends die

But, and elsewhere, she also writes

 This is my quotidian

But it’s not everything

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.

Life After Life

Life after Life is Kate Atkinson’s new novel – it’s long and gratifying. I have read a lot the last three weeks, mostly though not exclusively novels, the reading matter overseen and sat upon by Elvis. Reading is one of the things you can do while keeping your head very still so the world doesn’t spin, and if it’s engrossing you can be transported. You might think that the “second” life in the title is a replacement of the word and concept of “death.” Not really. On the most simple level the novel plays with the idea of the novel. The novel as a progression of seemingly inevitable events, of teleology, of the crocheting of character and description into the momentum of plot. But life too, as we live it day by day, entails plotting, dramatization and anticipation. Atkinson asks “what if”? What if, for instance, the baby had lived instead of dying, what if –that old chestnut—Hitler had been assassinated, what if the dog had a different name, what if the girl had kicked back? A writer can mess with events and this is what she does, giving us multiple versions or possibilities, or more accurately – unfoldings. But philosophically, she also spins a meditation – upon the eternal return. The idea that what exists after life is not death but more life, or more prosaically we could say people go on living, and the dead re-emerge in various incarnations according to different beliefs and modes of representation, and through the intricacies of memory. As always she is preoccupied with the concepts of déjà vu and amor fati, of history and the future, of memory and delusion. A minor but key character whose presence is woven through the book is a Buddhistic (come Nietzschean) psychoanalyst. In one of her incarnations, as a ten year old girl, Ursula is sent to see him.

 He had trained in Vienna (“Where else?) but trod, he said, his own path. He was no one’s disciple, he said, although he had studied “at the feet of all the teachers. One must nose forward,” he said. “Nudge one’s way through the chaos of our thoughts. Unite the divided self.” Ursula had no idea what he was talking about.

Atkinson also plays with the idea of the novel as a bourgeois form. Life After Life begins with a long idyllic evocation of upper middle class English life. She has said that it was Forster always at her back, but to me the angel at her back is Virginia Woolf, particularly Mrs Dalloway. As the story begins again and again on that snowy night in 1910 so the Merchant and Ivory scenario disintegrates and nostalgia is untethered, teased out, floats like seaweed in a bloody sea. Not just the Virginia Woolf of the novels but also the essayist and the woman who kept a diary full of quotidian details. While it is surely a false dichotomy to pose quotidian detail against the sweep of history, the trick is surely to understand and craft scale, through writing to mobilize that precarious, never stable, relation between scale and perspective. What the most intriguing novels and biographies do is illuminate not just details within the large sweep of history, but the sweep of history in the details. The new biography of Marx by Jonathan Sperber does this. I dipped in and out of it while out-of-it. Jeffrey read it voraciously from cover to cover (when it could be pried away from Elvis) and would relay the revelations, day by day, in between making endless supplies of chicken soup, a ministering Scheherazade.

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I always find myself (again, time after time, life after life) a better Buddhist when things are going well. “Better” of course is the wrong word, no I mean more inclined to be philosophically calm and accepting of fate, unperturbed by death. The last few days, before this awful smothering black blanket of nausea lifted I felt very despairing, as though I would never get better, even for a while. “This is it!” kind of a feeling. There is a simple line in Life After Life: “How sorry she felt for herself, as if she were someone else.” Somehow, as almost everyone must know, illness induces this as you see time falling through all the cracks in your life, never to be retrieved. Today, though, I feel grandiously like a besieged city that has been liberated. I woke up this morning feeling transformed, the nausea almost gone, euphoric. I hadn’t quite finished the Kate Atkinson and so got up, fed the cats (without experiencing that usual vomit-inducing odor as the tin of grain-free chicken-and-herring delight is prized open), let the chickens out in the dawn light, made a pot of tea and went back to bed and finished the novel – it felt so luxurious, reading not to allay sickness, but for pure pleasure. And of course I should know from the novel that after a besieged city is liberated (London and Berlin during the Second World War bombing) there isn’t immediate relief, what follows may be starvation, suicide, old age, mundanity. And yet …… and yet I loved the novel, it filled me with a peculiar happiness like Mrs Dalloway with her flowers. Atkinson has said you cannot write about happiness, that’s not what life is. It’s true the novel is not about finding happiness, I wept in parts and had to gloss over others that were too grim, and yet happiness is no less complex an emotion than say, despair, or misery, it’s just as implicated in the devious trajectories of desire. I’m glad I finished the novel on a high so I don’t always have it snuggled into bed, in a semi-illicit association with sickness.

Today I feel quite different, not sorry for my self at all, actually rather overwhelmed by the wonderful world I awoke into, but more convinced than ever that the self, though experienced materially, bodily, is a fiction. And what is it that constitutes feeling OK?

Being drug free is undoubtedly a big part of it. It surely must have been the combination of antibiotics with the chemo that made for such awfulness. Because of the initial searing gut pain and fever I diagnosed myself with a flare up of diverticulitis and my primary care Doctor agreed, urged antibiotics and since the fever and pain were subsiding, succumbed to my resistance to yet another Cat scan with contrast (time after time, too much radiation). I thought the antibiotics were working, but not really, the pain came and went. And the worst thing was the unrelenting nausea, dizziness, sensation of fainting even when lying still in bed. Kipps, my oncologist is inclined to think that this was clearly because of the piling up of chemicals (“we don’t know how the body will protest”) but also that the pain might not in fact have been provoked by an infection (and if this were the case, tho who’s to know, no need for antibiotics), but caused by tumor lysis. This refers to metabolic complications that can occur during cancer treatment, particularly in leukemia and lymphoma. Though the treatment is meant to reduce, say, the size and frequency of lymph nodes in fact it can do the opposite for a while. The lymph nodes in my gut area are increased in size and frequency and he guesses that this has put pressure on the colon. This makes sense but nevertheless I have a gut feeling (so apt a truism) that the chemicals are also ravaging my gut and so am drinking aloe vera juice an hour before eating, and also L-glutamin powder – both of which restore the mucous membrane of the colon stripped away by antibiotics as we know, but also by the other drugs. Acupuncture provided miraculous relief, but only for a short time (though it was amazing to see how color returned to my face during those sessions). However, my skin is so thin now. Thicker emotionally perhaps but in the end there is just that thin penumbra between you and the world.

Now I’m into the fourth round. Kipps decided not to up the dose because of the complications, though he is reluctant, and feels that it is only with an increased dose that some of the symptoms will abate and improvement register (white and red blood counts are miraculously in the normal zone, but others wonky). Still, it is underway and am feeling almost fine. Phew! With trepidation I have another immunoglobulin infusion this week, since an adverse reaction during the last one…

There are other things besides acupuncture that provided relief and forgetfulness. I thought I could drive myself to acupuncture one time but when I got out of bed realized that this wasn’t going to work. I called Tershia and she came and fetched me in her 1969 Porsche (a 912, 500,000 + miles, named “Lawrence” after T.E., as its first paint color was “Sand.”). Tershia turned it green. Just looking at it is a joy. It registers beauty—in its design, but also in that color, that delicious green that seems otherwise to have disappeared from the world, a green of mahjong pieces, of bathroom tiles and my grandmother’s kitchen. Nothing grandmotherly about that ride to the acupuncturist, however. Tershia drives her racing car as though it were a racing car. You might think that this would exacerbate nausea, but it was rather like entering into a dream. I loved being inside that greenness, whizzing through the city.

And then there was the poppy. Steve Ilott gave me, months ago, some white poppies he had started. We planted them out and waited and waited as they grew in a spindly fashion. Then one day as I lay languishing, feeling sorry for myself, Peggy—who was working in the garden, fighting the weeds which have gone beserk since people on the street started planting “low maintenance native” grasses—took a picture of the blooming poppy on her i-phone and sent it to me in the house. It was a totally unexpected apparition: a glorious white pom pom. I had been assuming that an old fashioned and elegant poppy would eventually bloom. Instead: the sheer exuberance and excess of that “Swansdown” startled me into delight. On the morning when I awoke feeling OK I opened the front door in the early morning and there were four white pompoms, gleaming in amongst the irises and salvia, roses and fennel, brash colors muted momentarily in the dawn, ceding glory to Swansdown.

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