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.