Cancer Bitch Behaves Badly Again

I went to Caribou Coffee on my way to meet my friend F for lunch. There were bags of coffee for sale with pink ribbons on them. Part of the price goes to the Susan G. Komen foundation, which goes for--what? More pink ribbons, I suppose. I think Komen should sign on with Christo to wrap every woman with pink ribbons. Then it won't matter if they have breast cancer or not, because you won't be able to see it. As long as you can't see it, it's not a problem. And when they die, the survivors can turn the ribbons into a shroud.

Oh, where was I? Yes, Caribou does sell coffee with pink ribbons with some portion going to the Komen million-dollar ad campaign. (Really. That's true about the million dollars.) Too late to help Komen herself; she's daid. You can guess what killed her. Anyway, I asked what percentage went to the foundation, and the barista told me that the company had pledged $100,000 and she asked if I wanted to buy a bag of coffee, and I said no, that as someone with breast cancer I support an organization that researches the cause. Which is true but makes no sense. You think someone with breast cancer would be focused on cure. But I guess I'm just a selfless cancer bitch. I regret that I spoke to her in a tight, aggressive and aggrieved tone. I think she felt sorry for me because she offered me a Caribou scratcher card (Winner gets a free trip to Costa Rica!) and when I wasn't a winner she kept taking out more and more cards and scratching them even though there were people in line behind me. Finally after a half dozen cards she gave up.

I've been to Costa Rica.. I went with N in the late 1980s. I didn't have a good time there, even though we saw monkeys and lizards and the beach, because I have trouble having a good time on vacation. I get struck with ennui and the meaningless of everything. When L and I travel it always has to be to a place with a coffee house so that I can work.

I will let an honorary cancer bitch, Canadian professor Samantha King, have the last words here, from her book, Pink Ribbons, Inc: Breast Cancer and the Politics of Philanthropy: "As the Komen Foundation and its corporate sponsors continue to pump money into a research and education agenda that centers on uncritically promoting mammography, encouraging the use of pharmaceuticals to 'prevent' breast cancer, and avoiding any consideration of environmental links to the disease it becomes less clear whether they are not actually doing more harm than good...."

Remembrance of Things Past or: Everybody's Got a Web Site (Except Frieda)

My friend Miz J, AKA fabulous cartoonist Jennifer Berman, called today to tell me about a dream she dreamt in my honor. She was (in the dream) approaching Paris, and it looked all Impressionist-y , just as Monet and Renoir had painted it and she realized that Paris really did look that way. Then she was in a gallery where cartoonist Nicole Hollander was working. She was making molds of the breasts of women who were about to have mastectomies. This reminded me of Cynthia Plaster Caster, who makes molds of the penises of rock musicians. Similar, but not the same. There's no surgery involved with Ms. Plaster Caster's project. You could argue that there's loss all the same: she had one-night stands with some of these guys. And--this just in--I just found out from her web site that she has also cast a few breasts. Anyway, the dream led to an idea from Miz J. Three people so far (Garry Cooper, my old boss C who is now my new boss C*, and my sister) have suggested I sell advertising space on my head. Miz J suggested I have different artists work on my bare scalp. I said I would reserve her a space. I'll have to have advance warning so I can let the henna fade.

I was thinking I could auction off my scalp to artists and have the proceeds go to Breast Cancer Action. Or have the artists work for free, and sell tickets to watch? I don't know if I would have takers for either. But after all, people pay extra to sit at a table in the kitchen of fancy restaurants so that they can watch. the food artists at work

Years ago, my friend Frieda Dean created a hat gallery. She wore a hat that displayed small canvases she'd painted. Read about the gallery in the Comments section of this post, in an article by Jessica Seigel.

I am so glad I have a decorated scalp. I was in Trader Joe's tonight in the soup-olives-peanut butter aisle and a little girl said something to her father about "funny hair." I said: I don't have any hair. I have designs on my head. You have to choose one or the other, I said, hair or designs.

I didn't feel bad at all. I think I would have felt much more self-conscious if my head was bare.

Frieda was my neighbor on Buckingham Place on the North Side. I coveted her address, 733-1/2. I was plain 733. Frieda moved from Lakeview to Logan Square, where she lived in the brick Art Nouveau apartment where William Paley had lived as a child, and then to Manhattan, near Wall Street. After 9/11 I called her and she said she was having trouble explaining to her dog Butch (a skinny Italian greyhound) why he couldn't go outside. Next time I called her she was gone. I've found her on-line at an art school in Georgia and I sent her a card c/o the place but she didn't write back. When I run into Alex Kotlowitz, who met an ex-girlfriend through Frieda, he asks me about Frieda, and looks at me accusingly when I say I lost her. But I thought you were good friends, he says.

*C was my boss as Well-Regarded University. He is now my boss's boss at Intellectual University, where I also teach part time. His dissertation was on Joseph Roth.

A Cancer Bitch Behaving Badly

Yesterday I went out lightly dressed and didn't mean to be gone all day, but I was. And it got colder and colder (52 degrees). Around 8pm or so I walked the half mile from Letizia's Natural Bakery on Division near Damen, where I had a latte and a chocolate chip biscotto* and did some editing work, over to Ashland to get the bus. I was waiting in the shelter when a young woman approached and said she was homeless, did we have change. All of us said no and she walked away. A small middle-aged woman among us with an accent that sounded East European though she looked Asian started spewing, Why doesn't she get a job? She could get a job. She shouldn't ask for money. In America people can work. And a girl sitting on the bench next to me tried to mollify: It's hard to get a job without an address, you don't know the circumstances. I didn't say anything because I would have said something along those lines. A few minutes later the girl came back and asked again for money and the Asian/European woman said to her angrily, You should get a job, why don't you get a job? and the girl left.

The bus came. I got off at Addison and waited in the drizzle for the Addison bus, with a woman who claimed that the bus comes at scheduled times. In all my years in Chicago I have never known a CTA bus or train to come when it's supposed to. I've always presumed that the schedule is some bureaucrat's flight of fancy. But sure enough, the bus came within a minute or two of its appointed time. When I exited at Clark it was still raining. There was a Cubs game and I was going to cut through the parking lot but some young guys in Cubs-type uniforms were standing bunched up near the entrance. One of them came up to me as I tried to go through. He said, You can't go through the parking lot. I said why? He said, I don't kno--because the players come through here and you can't get close to them. I didn't ask him why the players would be leaving in the middle of the game. He said I could take another path that was almost the same. I was so angry and cold and damp and didn't want to take an extra step. I yelled, It's raining and I HAVE CANCER!

And I turned and took the other path. It really was almost the same as cutting through the lot. I was so angry even though I was laughing at myself. I could understand how people get out of control and become abusive in public. I wanted him to recognize how stupid it was that there were five guys standing there guarding a lot from me. Me me me. I am harmless. I am a Wrigleyville resident not some stupid fan. I live around here and put up with the Cubs traffic every year and the fans peeing and shouting in the alley and stealing our potted plants from the porch. I am wet and cold and I AM CANCER BITCH.

*Nota Bene: "Biscotti" is plural only, despite what you hear and read. It means "twice cooked." Thus "terra cotta" means "cooked earth." "Panna cotta" means "cooked cream." All this has nothing to do with the word origin of matzah. Or you can just ask for the mandel bread.

Freedom and Development

At dinner Saturday (it seems we are always going to dinnner; we are; we're yuppies, I've said to L; no, he said, we're not Y; oh, then I said, we're nyuppies--NOT-young urban professionals) T and J were talking about Amartya Sen's Development as Freedom, and I was glad because there were four of us who knew one another well, and then T, who didn't know any of us that well, and there he was talking in such a spritely, involved fashion with J, a fellow reader of the New York Review of Books; they were having an Exchange of Ideas. Among the five of us there were three subscribers of the Review (I'm the third). J, I know for sure, both reads it and remembers what he reads. He has lots of time on planes to read, but even if I had his time, I wouldn't necessarily have his memory of articles not long past. What I am drawn to in the Review is the easy, familiar stuff--biographies and Holocaust and Alison Lurie on children's lit. I also like the foreign policy critiques that reinforce my own attitudes. But I digress. I was happy and all to be with intellectual friends talking about a Nobel-prize-winning economist, about whose work I must have skipped myriad articles, but what I really wanted to talk about was my scalp. Why, did people think, did I still have stubble? Logically, if all my hair was falling out, the stubble should be falling out, too. Another friend had given me an explanation a week before about hair growth and regrowth but hadn't made sense; I couldn't follow. One explanation that's logical is that longer hair puts more weight on the hair root and thus leads to more rapid hair-falling. But still, when I ran my hand across my head, no hair came out, and wouldn't that friction against it equal the pull of long strands? We had talked about the vagaries of my hair and scalp a little bit before dinner, but I thought the subject could stand a more thorough and nuanced analysis, preceeded by a summary of the earlier conversation. J's wife V (the local, not the V from the train) had already remarked that it seemed I had male-pattern baldness because the stubble was darker and thicker on the sides and back, and there was less hair in the middle, where the Mohawk had been. We hadn't discussed this for at least an hour, and I thought there would be many more insights people could offer. But no one at dinner saw fit to re-discuss my hairs, and conversation turned to other matters. Such as this story from T:

Army recruiters are apparently scouting the parking lots of Jewel supermarkets and the like, aiming to capture young people leaving their minimum-wage jobs for the day. T's nephew works at a suburban Jewel, and a recruiter approached him in the parking lot and started his pitch. The nephew listened and gave him his phone number. The nephew has no intention of joining up. He's a senior in high school bound for college in the fall. The Jewel isn't the end of the line for him; he works there because his family has a strong work ethic. This is what surprised me: He didn't feign interest in order to be mean or to be a prankster. It was instead part of a thought-out effort to protect the recruiter. The kid was afraid that the man would be sent to Iraq if he didn't provide enough names of live prospects and he wanted to delay the recruiter's deployment. He wanted to keep him safe.

He also had Caller I.D. so he could avoid the man's phone calls.

Where there is hope, there is life.

We ate at Caliente. I had the chicken in mole de chile rojo and L had the enchiladas del mar. The chemo nurse, by chance, was at the next table. She didn't talk about my hair either.

Notes on the Visible/Invisible

The shaving of the head, in order to make women visible, to shame them. (I told my neighbor I was going to get a sign that said, I slept with a Nazi, but he didn't get it. And then in the movie Black Book, there they were in post-war Holland, the "Nazi whores" being paraded down the street with shaved heads and derisive signs.)

The continuum from voluntary to involuntary hairlessness. Look for "chemo caps" or "chemo hats" on Google and you find rosters of turbans and cloches and caps and sun hats and scarves and wigs soon you will find the Yiddish word "tichel," for handkerchief. The Orthodox Jews and the residents of Chemolandia, both part of a market share. The Chemolandians just passing through, the pious there for the long haul, no fly-by-nights. Where are the kerchiefs for the Muslim women? They don't turn up. To find them you have to look for "hijab." And then the world opens up for you, of luxury hijab pins and jilbabs and bonnet caps, and you learn that Ikea has commissioned a hijab to be be part of its sales clerk uniform.

The shaving of the head to create instant conformity: the military, of course. The shaving of the head for hygenic purposes, to rid the community of lice. The shaving of the head as humiliation, to make the Jews/any prisoners/ just one of many. Oneofmany. In Seed of Sarah, Judith Magyar Isaacson describes her first day at Auschwitz. The showers. The real ones, with water. Then she is shorn and shaved and disinfected, and stands in line for clothes. Then she is rushed at a by a male inmate in a ragged blanket. It is her mother. Without hair, everyone has become male. Everyone is the same.

The medicine took away my hair. I focus on the hair, the hair, that is what is lost. We focus on the hair, the hair the hair. It begins to fall away, which I cannot help. I am help-less. So then I cut and shave it. I leave a Mohawk, I shape the hair that is left, therefore having agency, as the Ph.D.s would say. Then the Mohawk, my Mohawk, falls away. And I shave off the rest of the very thinned hairs. I henna the bare head. Thus I have agency again. I am seizing the means of ---decoration. In a way, I have chosen all, I am in control. I have chosen to comply with the medical establishment. I have chosen to take its poison. I have chosen the poison so that I will not die. I will take the draught that kills, but not all the way dead. Just a little. It just kills a little. I am a little bit dead.

My hair is dead, it falls away. Inside me, rapidly-multiplying cells are attacked rapidly. Inside there is a battle of strong versus weak. The cancer cells want to gallop away and the chemo runs after them, to stop them in their tracks. The chemo pursues. Adriamycin is red and can destroy tissue, you must be careful when administering it. If you are a cancer cell, beware beware.

It is all invisible, this raging war. The patient is told to conjure up this cell eating that cell. Strong happy cells munching on cancer cells. A Pac Man game inside the body. Your mind will keep the score going up and up. Your mind and will.

Everything looks good, the surgeon told me last week. Everything is fine. You're doing well. What would be not doing well? I asked. Not doing the chemo, she said. Non-compliance. The doctor's biggest bane, the patient who is not compliant. Kathy Acker died of breast cancer after a double mastectomy and alternative treatments. Did she refuse chemo? Would it have made a difference? In my ignorance of her particular circumstances I am angry at her, I am snobbish, superior, I am telling her posthumous self that she should have gone for the chemo. Chosen that box. Gone through that door. Though she didn't have insurance. She had fame, underground fame but no insurance. Could she have gotten chemo without insurance? In county hospital here, you get treatment if you have cancer, but it takes a year to schedule a mammogram. A year. And if you have to cancel, you wait another year.

Pause. I look up Acker (See Comments; only half the article available), see that the doctor said to do chemo, that with it she had a 70 percent chance of avoiding recurrence. But with it, a 60 percent chance. She decided the difference wasn't worth it. She had cancer in her lymph nodes but thought that they might not be full of cancer but a catch-basin for the cancer. I read what she wrote about healers and past lives and healing the self. How can you heal the self? She did not heal the self. She died. She died in Tijuana. Would she have died with chemo?

I am skeptical, skeptical, skeptical. Of her work. Of her talent. I never got her work. It was shouting and made up of the mouths of French philosophes. It seemed to be cheating. She was cheating by shouting and talking Rimbaud & Deleuze. She was performative. She had short-cropped hair, possibly buzzed. I am not happy that she is dead. But she is dead. I do not approve. I wish she had insurance. I go to an acupuncturist. I do not believe in past lives, except metaphorically.

And I believe metaphor is real. And invisible.

Cancer is Boring

It is life-threatening but boring. And mysterious but boring. Mysterious because I don't even know if I still have it. Was it all cut out? Is this long, hair-losing journey into Chemolandia unnecessary? No one will ever know. For a mystery to be pungent we have to have a certain level of information. There is not enough information now. I can get my blood count and such, but not my cancer count. No one knows if little cells are causing havoc. Which sounds exciting. No one knows if the little cells are landing in a fertile patch and reproducing wildly. Which also sounds exciting. But is projection. The cancer cells do not have feelings. Or brains. We don't think. Maybe they do and they're thinking that humans are big brainless machines or worlds.

I am bored. I am bored of this flatland, end-of-semester, is-that-all-there-is? feeling. Let's call it the 2nd Round of Chemo Drop-off. Cancer ain't new anymore. Threatens to become routine and dull. Or maybe I'm just sobered oh so sobered by losing my hair and wanting to be pretty and not look like Telly Savalas but not wanting to get a wig either because... because that would be fake? expected? because it would be hot and uncomfortable? because I want to not do the standard thing because then I would be like everybody else, and as the girl said in the long-running Fantasticks: I am special. Please God, please – don’t let me be normal.

Cancer is ordinary and extraordinary. A cell given a little genetic or environmental jolt and off it goes on its own like a windup toy that doesn't stop or may not stop. Or may rattle and shake and ruin the whole toy shop in its crazed journey.

Boring people get cancer. Exciting people get cancer. Clods and dolts and geniuses. I'm sure people who study cancer think it's fascinating--at first. But they probably get bored too. Because they are nose-to-nose with it. Every day. Trying this and that, being very careful to calibrate and measure. Using the scientific method. Taking detailed notes. They study cancer's properties. They are trying to parse it. Adding this and this to the soup to see what happens. Or doesn't.

Head Covering

I became un-Mohawked last night. I'd suspected that the Mohawk was staying put mostly because of the gel, and that without it, it would fall out. I was close. I located the only comb in the house, a plain black one courtesy of my surgery stay at Fancy Hospital. It had come in a plastic bag with shampoo, and I'm sure added $700 to the bill. I combed and the Mohawk came out in hunks, leaving a very thin veil of hair behind. When L came home from basketball, I made him trim and electric-shave the middle of my head. There were strange ridges left around the Mohawk border, and I made him shave more, even though he was dead tired. Then I was mad at him because he hadn't been eager and adept, but mostly because I was so unhappy to lose my hair. The Mohawk was fun, he said. Bald isn't fun. For the first time he has more hair than I do.

In good news, I received two head coverings in the mail yesterday. The first was a lovely red tam knit by the fabulous T in LA. The second was from Y the costumed activist. It is a light scarfy thing that covers my head closely and ties in back. It's black with white scorpions, and was designed for an Italian racing team. I can use the black one as an under-hat. With the tam on top, it looks sort of like I have hair. I can move the tam around, too, so that it flops this way and that. I'd tried on some tams over the weekend, but none looked as good as this one.

I was so happy to get both in the mail.

Today I am feeling droopy because I am un-Mohawked even though I am still grateful and pleased by these gifts. The sun is shining, the daffodils might actually recover from being cold-nipped the other day, but I had trouble sleeping last night and I want to go crawl somewhere and watch a movie. But I must get my three miles in and grade some papers. I went to the bank today to finish up some work on my IRA I'd started Tuesday and the guy there had to copy down my driver's license number. He looked at the picture and asked me (wearing a hat) how I went from the driver's license hair to a Mohawk. I said, Chemo. and told him I'd lost the Mohawk yesterday. Oh, he said, that's not too exciting. He seemed disappointed. I suppose he wanted to hear about a dramatic mid-life shift. Maybe he imagined getting free tickets to hear me play in a punk band. And thus his life would be changed.

Men with Guns 2

I went to the concert hall at Well-Regarded University last night to hear Peter Gay (see yesterday's post). It was near starting time and I squeezed my way down an aisle close in where there was just one seat. I sat next to a woman with straight gray hair, jowels and a prominent lower lip. She looked to be in her late 70s or older. She was wearing a hat (I notice hats a lot more than I used to) that was beige, cloche-like, with a chain above the brim. I almost asked her where she got it. Gay's topic was Guenther Grass' disclosure that he had served as a volunteer in the Waffen-SS as a young man at the end of the war. The woman said she doubted that most of the audience had read Grass. We were talking when the lights dimmed. Her husband shushed us. He's German, she said in explanation. German Jewish, she added, in case that wasn't clear. Are you Polish? I asked. She nodded. She was a survivor. I didn't get details. It was an odd topic for a hybrid audience for a talk sponsored by the university as well as Jewish community. The audience was mostly white-haired, with some professors in front and students in the balcony. Gay talked about Grass' disclosure and reaction to it. That was it. Some people couldn't hear well. He was white-haired, too, walked up to the podium with a walker, but stood as he spoke. I wondered if it was a good thing that people were riled up about his military service. What would it mean if there were no reaction to it? Would it mean that history, Germany history, fascist history, world history didn't matter?

My general sense afterward was that the audience was disappointed. The woman next to me gave off the feeling: I was there in the Holocaust, was this valuable for me to hear? It reminded me of a conversation I overheard in Caen, France, about seven summers ago, at the bus stop across the street from Le Mémorial de Caen, a big museum devoted to World War II. A young man asked an older woman if she'd visited the museum, which was built in 1988. It seemed like they were strangers, and both residents of the town. No, she said, I don't have to. I lived through it.

My friend D, in town for the day, drove me to campus and picked me up. He stayed around for the reception. He walked behind me and commented on the stare-avert reaction of people to my Mohawk. I hadn't noticed.

After the talk I told Peter Gay about my encounter on the L (see yesterday) and gave him a copy of my book about Holocaust and memory. I'd emailed the professor who introduced him (along with other people on campus) to alert them of my new hair-do. I don't think he got to the message and he didn't recognize me.

All that seems so trivial. The important thing is that I don't know how I would have reacted if I'd had Cho Seung-Hui in a creative writing class. Nikki Giovanni did. He was silent, hiding behind sunglasses and a hat, turning in "tirade"s, and taking photos of women students' legs during class. "There was no writing. I wasn’t teaching him anything, and he didn’t want to learn anything,” she told the Associated Press. Female students stopped coming to class. So she wrote to the department chair, who took him on for private sessions. The dean's office and campus police said they couldn't do anything because he hadn't made threats.

And then the semester ended.

I taught a seminar in teaching writing last fall. We discussed an essay about students who write about trauma. The author of the essay criticizes herself for going too far with one student, in having her return to the scene of the event, basically, to rub her nose in it. My students said they would have felt their privacy was violated they'd written about suicide in a creative writing workshop and teacher had taughted to them about it. But there's violence--toward self or others--in writing, and there's anti-social, aggressive, disruptive behavior in class. Two different things. When I taught at an art school downtown, I had a few first-year students who wrote about suicide. I remember talking to at least one of them. I wrote on her paper that she might want to see one of the school psychologists and I also talked to her. I talked to one of the school psychologists, too, who told me she couldn't tell me whether the student had seen her. The student herself later told me she had. And that was it.

But she wasn't disrupting the class. She wasn't writing violent, offensive work, which Cho did in another Virginia Tech writing class. What do you do? An expert of some kind on NPR today said that we were seeing the limit of what could be done by the university (and society at large, I think he was saying), that no more could be done, that we all want to live in an orderly world and we can't make it that way.

Is that all?

Men with Guns

Monday on the subway going to chemo, I was re-reading Peter Gay's memoir, My German Question: Growing Up in Nazi Berlin, in preparation for hearing his lecture Tuesday at WRU (Well-Regarded University). A more accurate subtitle: Growing Up Jewish But Not Really Jewish in Berlin, and it Not Really Mattering Until the Nazis Made it Matter. Train stops, I shut the book, walk to the exit. A man standing there, looks at me and I'm thinking he's looking at my hat because clearly I'm bald underneath. He says, Auf Wiedersehen. I look at him and smile. Apparently he saw that the book was about Germany. It is about Germany, in a general and very particular way. Was he showing off his German? Was he German? He didn't look German. He was pudgy, maybe in his early 30s, with dark cropped hair. (Peter Gay's father didn't look Jewish; his non-Jewish business partner in Berlin didn't look German.) Gay's title is obviously a play on the term, The Jewish Question, which was asked all over Europe in the 19th century: Could the Jew be a European? The word "Jew" inot not appear on the cover of Gay's memoir. There's a picture of a Jew, Peter Israel Froelich, in a passport photo, stamped on April 21, 1939, when he was allowed to emigrate. The man on the L did not ask the Jewish Question. He did not ask any questions. He assumed. I assume he had no idea who Peter Gay is. (Gay changed from Froelich, "happy." The middle name Israel inserted by the Nazis.) I feel there are so many layers and layers of thought and history and life and assumption between what the guy on the subway said (one word!) and whatever response I could have given. The gap is huge. Or maybe not. I walked out the exit and up the stairs onto the street and toward hospital.
At chemo, the nurse asked if we'd heard about Virginia Tech. I'd heard vaguely, L hadn't yet. Several years ago some young Israeli soldiers came to the school I will call Catholic Conscience University to talk about why they refused to serve in the Occupied Territories. They were talking about how strange it was to be the U.S. One said something like this: If this were a university in Israel, you'd have metal detectors and soldiers at the gates and in all the buildings. And the audience laughed. I couldn't figure out, then, why they laughed and I still don't know. Because such measures seemed ludicrous? The young soldiers were bemused. Why are you laughing? they asked no one in particular, and no one answered. Some day there will be armed guards in hospitals and universities and we will shake our heads and think about the time when we had free access to so many places. I remember when stores didn't have security guards. Hell, I remember going to Foley's and Neiman-Marcus and Battlestein's in downtown Houston and just *telling* the clerk my parents' name and address, and being able to charge clothes. Some friends from Chicago remember going to the credit department in Marshall Field's and having the lady call home for permission to charge for a day.
Saturday we went to a memorial service for Ruth Young. She was the stepmother of our friend B, who lives in Berkeley. Ruth was managing editor of The Bulletin of the Atomic Scientists, editor of the women's literary magazine Primavera. She was married to Quentin Young, famous (in these parts) physician-activist. The service was star studded, in a Chicago kind of way. Studs Terkel was there, nearly 95, looking small and bent over and wearing his permanent red-checked shirt; legendary former Hyde Park alderman Leon Depres, 99, was there; and current Hyde Park alderman Toni Preckwinkle, and writers and activists and public hospital doctors and people I could pick out and people I couldn't. Later we were walking nearby and saw a street honoring Depres. He was independent in the Richard J. Daley days, which meant he was liberal and courageous. At the service, everyone talked about how Ruth could befriend children--not temporarily, but for years and years and change their lives. She sounds like she truly had the genius for friendship, which is an expression I've heard but never connected to anyone I knew. L and I knew her slightly. We had a few nice conversations with her when B came to Chicago. From Ruth we learned that the city Blue Bag recycling program doesn't work and therefore we lug our recycling to a private non-profit center about a mile away. We learned so much about her at the eulogy. She declared herself an atheist at 12 and never turned back. She was a tireless peace activist. But also an anonymous sender of flowers to a friend on her birthday ("from a secret admirer"), year after year, until her cover was blown. Then she stopped. Because of her, her husband gave his children gifts. Before her, he had told them on their birthdays: I gave you the gift of life.

She died of cancer. I tried not to think too much about myself and my new Mohawk, and to listen to the eulogies and to not wonder if people there didn't recognize me without my thick wavy hair. I know at least one acquaintance didn't. Ruth was extraordinary and in some ways I wanted her life and her attributes and her friends. Her friends and family described much honesty and conversation and arguments and questions and great food and drink. Who wouldn't want a life like that, while you were fighting the good fight? After the service, an 80-year-old cousin of the family started talking to us and looked at my hair and said, You're an artist, aren't you? You're making a statement. I didn't feel like saying, NO, I HAVE CANCER, so I said, Yeah, I'm a writer.
L and I walked around Hyde Park looking for hats and scarves. We stopped in a cafe. I heard two highschoolers talking about college applications. One boy said he received a fat envelople and two thin ones from the same medium-sized private university in New Jersey, which will be nameless here. He was so excited about the first one he called his mother at work. It was an acceptance, of course. And then he opened the second. It was a letter that said, Sorry, we admitted you by mistake. Then the third letter: You're on the wait list. And then, days later, he got a letter from the school chastising him for not responding to his acceptance by the deadline. How funny it would be if he declined in order to move himself up on the wait list.
While I was waiting to have my blood tested, pre-chemo, in the Cancer Center at Fancy Hospital, I saw two young men talking. One had a cane. They were both thin. The one with the cane said: You're insecure. You're a teacher. You're not appreciated. He said: You've led a whole lot of lives. This is not your first life. The other guy showed him the lines on his palm. They seemed to talk about life lines and heart lines. Then the cane guy talked about himself. He said that a woman (presumably a fortune-teller) told him, You should really enjoy your life now. He was upset. He thought that was rude. And then six months later he had a car accident. Two other people told him similar things. So he said, I don't have my hands read any more. I don't want to know.

We saw a movie about this the other week: First Snow.

My blood counts were fine. The oncologist seemed kind of bored at how fine I was. Not unhappy or rude but unsurprised. His Israeli sidekick wasn't there. I missed him. He was much more friendly and personable. But I don't need a friendly oncologist. Just one who answers my questions and whose poison will work.

Chemo was in a different room than last time. If you turned the lounge chair halfway around you could have a view of Lake Michigan. So there, cancer-sister in Marin County, you with your chemo view of Mt. Tamalpais. We have the lake! And buildings! Seeing nothing but nature out the window would make me nervous.

At the memorial service I was thinking, I don't want people to talk about me as a teacher or a friend. I want them to talk about my words.

Do I mean that?
Before I left home for chemo on Monday there were about four listserv messages from an academic organization I belong to, Women in German, about German professors at Virginia Tech who may have been killed. I skipped over the messages and put them in the trash because the people didn't matter to me. I didn't know them. This morning the situation seemed more real and visceral as I've read and more. There's a note about someone's former student who definitely was killed. The image of a real person started to form in my head.
The first stop in Chemolandia was a room where I got my blood drawn. It was the first time I'd had it taken from the port in my chest and I had to wait. I was apprehensive because I'd read on-line how it could hurt to be poked there and that you should ask for a prescription for lidocaine. But the technichian assured me that a splash of "cold spray"would be enough, and it was. When she was through she said, in a spritely tone, I'm the meanest person you're going to see today.

When It Falls, It Falls

My hair kept on falling out and falling out. You could see the part widen in the middle so that my scalp was visible. It is a nice scalp, pink and not scabrous, I'm happy to report. I'm sure I left a puddle of hair at my table at the little cafe down the street. So tonight it seemed like it was time. After dinner L and a visiting dignitary, R of Boston, shaved my head, leaving a road of hair down the middle. I was very cranky and scared throughout. I thought it would be a quick buzz cut, but instead it was a scissors cut followed by a tedious, scraping regular razor-and-shaving-cream process., with additional judicious snips with nail scissors. We told R if she ever gets tired of being a tenured academic she should try hairdressing. She has a keen eye and is attentive to details. Good work ethic, also. She will list the haircut in her CV under "service," as an interdisciplinary project in conjuction with the graduate program in creative writing at WRU (Well-Regarded University, where I teach). It will be called "Using Geertz's 'thick description' (and shaving cream) in the acquisition of a new skill set in experiential adult education in a non-traditional setting." We documented the whole thing with our digital camera, as you can see.

I had hair gel here but not the waxy sticky stuff, butI did the best I could. Instead of spikes I have a roll of big curls in the middle of my scalp. Still I look Goth-y. I feel that I should be mean and sulky because I have a Mohawk. I will have to smoke cigarettes and apply for a cashier job at Whole Foods. (Wait. To work at Whole Foods, I'll have to start wearing those button-like earrings that make your ears have bigger and bigger holes.) Will the punk kids recognize me as one of their own and teach me their secrets? My voisins de palier came over for scotch. M said I look very young. If I'm carded anywhere, I have no hope. I don't look much like my curly-haired driver's license photo any more. Will I be recognized at my bank? Tonight I sent an e-mail to a couple of people in my yoga class to prepare them for my transformation.

In a day or two the Mohawk also will fall off and I will be another bald girl with cancer. Or, being treated for cancer, even though the cancer has been cut out. As our cousin-brother in Marin County says, Cancer has left the building.

When my head is hairless my friend S will apply a design of leaves to my head with henna. In the middle I want her to write, U.S. out of Iraq. Then I will just be another bald-headed girl for peace.

Oops. Forgot to tip my hairstylists R and L.

The End of Women and Children First???

I read in Windy City Times today, in a feature about my favorite bookstore, Women and Children First, that it may close. In the thirteenth paragraph, the writer said, "Things have gotten so bad at WCF that both confirm the store must now plan month-to-month, not long-term. And the possibility that WCF might close before the end of the summer is very real, they confirmed." Talk about burying the lede. [It's really W&CF, but this blog does not allow me to use ampersands.]

I encourage all of you to order something from the store or if you're in Chicago, to physically go there, 5233 N. Clark. I think it's the largest feminist bookstore in the country. It's not as cheap as buying used books at Amazon, but it's a cultural institution.

I went there for the first time when it was still on Armitage (and I mean Armitage, not Halsted south of Armitage), down the street from the Guild Bookstore. Then Guild moved to Lincoln Avenue above Fullerton and WCF moved to Halsted. In 1990, to prepare for leaving Chicago for a year, I helped the store pack up books for its move to Andersonville. The store helped *make* Andersonville the cool, happ'nin' neighborhood that it is. I don't know how many times I've read there. Even before I had a book or had work in an anthology, I read at WCF with groups, including the defunct Feminist Writers Guild. (Took me a moment to dredge up the name. I grow old ... I grow old.) The first reading there I ever went to was by members of the Feminist Writers Guild, way back in the late 70s. Back there, there was also the Jane Addams feminist bookstore downtown.

You could argue that there's no more need for feminist bookstores. But you would be wrong.

The Guild died many years ago. The space was a coffee house and is now a nail salon.


The neighborhood acupuncturist told me today that I should be asleep by midnight and I'm already three minutes late, so this will be short. I went to Second City tonight with out-of-town friends and through the performance I was combing my hair with my fingers and coming out with strands. I formed them into a ball about the size of a jacks ball. We were sitting on the last rows so I don't think I was very distracting. Maybe I was. I'm sorry if I was. I laughed out loud once, during an otherwise dumb sketch about four Slovenians comprising that nation's army, which was helping the US in Iraq. Then a fifth fighter came on stage, and they all yelled, Surge! The American asked what his name was. Serge! he said.

A return to Vaudeville; well, I thought it was funny. The group swore too much. It annoys me when a comedian or troupe says something like "Motherfucker" and the audience laughs and laughs. First of all, it's amazing that those words are still taboo enough to make people laugh, nervously. Second of all, there's no cleverness involved, so I feel cheated. Any idiot can say "Fuck" in a crowded theatre. I've heard that comedians say when you bring out the dick jokes it means you're desperate. But the group didn't seem desperate. Just lazy, perhaps.

Of course the actors seemed young. Of course the performance made me want to take an improv class. I had a journalism grad student once who was training at Second City. She borrowed a grammar and style book and spilled orange juice on it. She'd had a difficult time figuring out where to go for grad school, so she called up the New York Times foreign desk and told the reporter who answered that she was thinking of Medill. Oh that's great, he said, I think Quebec is supposed to be beautiful.

The weird thing is that after hearing that, she came to Medill. She did buy me a new style book.

Hair is a Woman's Crowning Glory

I read a short story several months ago that I thought was dumb but I still remember it. It was about a Jewish woman with alopecia (hair loss) who became Orthodox partly so that she could wear a wig and not feel self-conscious. But she felt restive within the community's confines. Or at least that's how I remember it. It's an intriguing idea: one's body leading to a new identity. My colleague H's sister has lost her hair from chemo. He says she looks like a little monk. Shall I become a Buddhist monk? A Hare Krishna?

I know the analogy is not perfect. The woman in the story had alopecia her whole life.

I am still with hair.* With thick, curly hair. The chemo nurse said I would begin to shed on Day 16. Today is Day 15. I've heard your scalp starts tingling before the hair falls out. I have been tooling around on the Internet and found information about a cold cap. Basically, you wear a freezing cap during chemo and the cold keeps the hair follicles from being affected. This is apparently practiced in Europe, but there have been no definitive studies. I called the third-year oncology-hematology Fellow yesterday to ask him about the cap and about antioxidants. He called right back. I called him because he talked to us (the committee: L, my mother and me)before the Real Oncologist came in and he seemed knowledgable. Unlike most doctors I've seen, he'd read my chart and knew all about my high platelet count. He seemed very comfortable and confident and lives in my neighborhood. Was I intimidated by the Real Onc? Do I feel I don't deserve to talk to the Expert? That's he's busy doing Important Things? Like what? Meeting with patients like me? Anway, the Fellow said he hadn't heard of the caps but then was looking them up online as we spoke. He said I could get one if I wanted. He said he remembered my curly hair and that it would probably grow back curly. He reiterated what he'd said in person, that people can be devastated by getting up in the morning and looking in the mirror at their baldness and being reminded of their cancer and treatment. I told him I was planning for baldness and that I was going to have an anti-war slogan written on my head in henna. He laughed and said something about it being seen from the air. Then I asked about antioxidants. (My cancer-sister in Marin County was told by her onc not to eat soy.) The Fellow said not to take supplements like Vitamin E but that I could eat soy and drink tea normally. Like once or twice a week? Yes, he said. I remember I'd asked the onc about this and he'd said green tea and soy was OK. At least I wrote this down. I don't really remember anything he said. I rely on L to remind me.

The problem with antioxidants is they can protect the cancer cells.

Is my scalp tingling?

Also, I must admit, the Fellow seemed Jewish. He had an Israeli name and a very slight accent. So I was going tribal, feeling more comfortable with one of my own. (I just looked around on the Internet and see, according to a Tribune article, that our Fellow, like us, eats in Chinatown on Christmas. We go to Lao Sze Chuan every Christmas Eve. Sometimes with rabbis. And he is Israeli. My mother thought so, too. We have highly developed Jew-dar. Or else it was obvious.)

As for the cold cap, I read some more and found out that it's possible that the cap will protect the follicles so well that the chemo won't kill any escaped cancer that's hiding out in the scalp.

My friend P's mother had chemo for thyroid cancer. She wrote notes because she had trouble speaking. P has this note from her: "They are going to wrap my head in cold ice packs to help preserve the hair." P doesn't remember the ice packs, but maybe she wasn't there at the time, she says.

Is it tingling? Is it? I'm apprehensive about losing my hair, afraid I'll look terrible but still so curious. Excited, even. Amazed that this thing could happen that has never happened to me before. (I suppose you could say the same thing about death. I don't think I'd feel the same way about death, though.)

*Caveat: The following is personal.
I took a bath today and lost a lot of pubic hair. It collected in the hair trap in the drain. It looked like a swarm of ants. I looked up "pubic hair" and "chemo" online and found a silly video about a pubic hair fashion show. I didn't watch much of it, but the filmmakers would have you believe that pubic hair can grow down to your knees. I didn't want to spend too much time there for fear that I would get on some porno list. The reason the video came up when I Googled those words was because someone had written in the comments section that the models should donate the hair to chemo patients. Let's not ponder that too seriously.

The Government Knows Much

Last month I received a fat business-sized envelope from the state of Illinois. The address was 100 W. Randolph and for a second I thought that it was from the Illinois Arts Council, containing a complaint about my writing the year I had an arts council fellowship. I know, I'm self-centered and paranoid.

It was from the Department of Public Health, and included a gift bag! (Congratulations, you have cancer. Here's a free gift!) It's an 8-1/2-inch square beige bag with a big pink ribbon printed in the center. On the top it says, SHOW YOU CARE. Underneath the ribbon it says, BE AWARE. All I can say is How and How? And what do you put in such a small bag?

Forgot to mention that the handles are pink.

There was a letter enclosed from the state director of public health that described a University of Illinois at Chicago study on breast cancer. "(e)ach woman has a unique story to tell about her diagnosis and treatment," he said. Would I participate in the study? The group is trying to get a handle on why African-American and Latina women have a lower incidence of breast cancer but are more likely to die of it. (I can tell you--minorities generally earn less, and thus have poor access to health insurance and good medical care.) The study also looks at the patient's social environment, delay in seeking treatment and type of treatment.

Today a girl came to my house and interviewed me. I was diappointed that all the questions were fill-in-the-blank, multiple choice or true/false. What about my unique story? Oh, I guess that's what this blog is for. The questions centered on my diagnosis, medical treatment, confidence in my doctors, my emotional support, the safety and resources of my neighborhood, my civic involvement. It took about an hour and a half and I got $100 in cash.

Why do I think this study won't do anything? I suppose it can bolster someone's lobbying efforts for more money for underserved communities. And that's good.

One of the questions was, If there was a fight outside, would my neighbors try to stop it? I said no, because we would call the police. Is calling the police stopping it? I assumed the question meant physically stepping in. There were questions about gang violence, graffiti, drinking in public. This is a relatively safe neighborhood, but because of the nearby bars and oh, that baseball stadium a block away, there is public intoxication. And loudness. Another question.

Today I received a post card from the district police office. It said that on March 30, my car was observed "with personal property clearly visible. In an effort to reduce theft...,we are asking that in the future, please secure personal property out of sight...." That must have been the night I left my cell phone on the front seat. I think this message is odd, and sweet.

The post card mentioned nothing about my breast cancer.

The Neighborhood Internist & An Embarrassment of Gynes

I went to my internist yesterday because L kept telling me I need antibiotics.* The chemo nurse thought I might, too, since I've had this cough and sore/dry throat for two weeks. She said I could still do chemo April 16 if I was on them. I don't know how long I've been going to this doctor. Maybe 10 years? I started going to her erstwhile partner, an older (than me) Belgian woman who B and S see. I didn't like her. I started crying in her office and she told me I was depressed, not anxious. I know I'm anxious. I don't have anything against depression, but that's not what I am; I don't feel there's a stigma with it. I've never had the classic signs of depression. Though I know I interchange the terms here in this blog. I thought it was arrogant of her to say abruptly and brusquely, You're depressed. So I went to the partner, who's Filipina, about my age, and who since moved to another office in the same building. Her staff speak Tagalog, so there's a mix of English and Tagalog in the office. Both arespoken quite muscially. There's always a wait. I was running late so I drove and parked at a meter. The appointment was at 11:45 and I got there about 10 minutes late. She saw me about an hour later. I worried about the meter but as I was contemplating going out to feed it, my name was called.

This doctor is always in a hurry but she's not so hard to reach by phone. She called me when she heard I had breast cancer and said she was praying for me. She didn't blink an eye at my cupping marks. She prescribed an antibiotic and said to call on Monday if I wasn't better, and she'd prescribe a steroid. Which I'd like to avoid since I had two courses of them in the late summer and fall and I think the chemo has steroids in the mix. And if so, shouldn't those steroids be helping my breathing?

Caveat: Now it gets personal. You may skip.
She did a Pap smear because I hadn't had one in 15 months. My periods have been so long that it was hard to schedule one. She found a polyp and said I needed it removed. She said I should also have an endometrial biopsy because of my long periods (which may be stopping because of the breastectomy and chemo). She said I needed to check with my gynecologist.

I do not know who my gynecologist is. I have a wonderful nurse practioner/midwife (Don't ask--I've never been pregnant) who hates the health care system and spends a lot of time in appointments and on the phone. But she can't remove polyps. She sent me before to a young gyne who removed a polyp and was going to remove my ovarian cyst and scrape away my fibroids but got freaked when I said I wanted to keep the ovary and just have the cyst cut out. She was afraid I'd be mad at her if she took the whole ovary out. So I went to a doctor she recommended, then I went to a doctor my friend A at Fancy recommended, and he did the surgery--removing both the ovary and salpingo (Fallopian tube, but salpingo sounds so much better). He said that fibroid surgery often doesn't work. (My cousin who has them has found this out the hard way.) This gyne is fine, though too good-looking to trust as a doctor (my irrational bias) and it takes fifteen layers of bureaucracy to get in touch with him. Both the nurse practioner and young gyne are easy to get a hold of. But neither is connected with Fancy Hospital. I guess I will call the Fancy one and see if I can get an appointment. I must add that my internist has been concerned about a lump on my former left breast for almost two years. She sent me to Saint Hospital to get an ultrasound about a year and a half ago and I was told it was nothing. She wanted me to get it checked out again this summer. Soon after I went to the male gyne and he told me it was nothing. It was nothing, if you consider that Stage 2a cancer is nothing...

I told L this afternoon that I'm breathing much better and he said in a deadpan voice, It must be the cupping.

Last night we dinner with our good friend V. She is our local friend V. We also have a Michigan friend V, who took the photos on this page. I was telling our Chicago V that an acupuncturist cupped me, and V kept saying, I don't believe you. Then she explained that she was thinking of cupping as it was practiced in the steel mills where she and L used to work. It's a prank I can't hear enough about for some reason. The workers would get a styrofoam cup and stick it in grease and then place it surreptitiously on top of the hard hat of a foreman. The foreman would wear this cup, looking ridiculous, until he figured it out. It's a variation of taping Kick Me on someone's back. It was very good to laugh and laugh over our very nice dinner of enchiladas and tamales. (I have become liberal or loose in Passover observance. I embrace my alleged Sephardic roots and eat corn, beans and rice, which they are allowed to eat on Pesach.)

Then I showed her my back and L said it was burned but V confirmed it was not. Though the polka dots are still red.

When I got back to my car after seeing the internist, the meter had run out and I had a ticket. I couldn't bear to look at it but I'm sure it'll cost more than the co-pay and antibiotics together.

*L claims he didn't keep telling me, that he told me once or twice.

The Neighborhood Acupuncturist

I tried out a new acupuncturist yesterday, recommended by my friend G, who pens the greatly amusing but scarily accurate Whirled News Tonight. G sees this acupuncturist's mother in Chinatown.

The place is about a 10-minute walk away, in a half-basement office below a brick apartment building on Addison. The waiting room was a small and white with a bench with three square cushions on it, a few plants and big vase in the corner. X (his real first initial) greeted me by name from behind the counter. He looks about 30, with wire-rims and frequent smiles. It was windy and snowing very very slightly yesterday. He wore a blue shirt with vest. I had to wait about 20 minutes. I filled out a form and read through Health magazine, before I realized I'd brought The Jewish Book of Why with me. I didn't get through the introduction. I learned that Judaism has changed in each epoch. Which I suspected, but never articulated. While I was waiting a guy was leaving. I asked him what he thought of X and he said he was great, and that his mother is the country's best herbalist. (I guess her expertise could trickle down to us. He could consult his mother on intractable problems.)

He asked me many of the same questions that the Absentmind Acupuncturist had asked me, except he tooks notes by hand instead of on the computer, and looked in my eyes and seemed to be paying attention. I told him that immediately I was worried about my cough and sore throat. He looked at my tongue and asked how I was sleeping. (Hadn't gotten enough the night before.) He took my pulse and blood pressure. We talked. I lay on my back on the massage bed and he stuck me in my head and legs, telling me what he was doing as he did it. He brought a heat lamp to warm my feet. He turned off the light and gave me a button to push in case I needed anything. (I pressed it when the warmer got too hot.) Then he cupped me. I had seen this done once before, in Nicaragua. This is how he did it: I stomach and he lifted my shirt. He took a small glass cup that looked like it could hold a votive candle, then picked up scissors with a gauzy pad at the end, dipped the pad in alcohol, then (behind my back) lighted the gauze, put it in the cup for a moment, then put the cup on me. It felt like a suction cup. Uh, I guess it was. The smoke, he said, got rid of the oxygen. He had several cups and put them down my back. He left them on for a few minutes. When he took them off he said the circles on the right side were red, which meant I had more tension on that side. The cups were supposed to help my lungs, as I recall, but more indirectly than you would think. Cupping increases circulation and releases energy. He said that in summer people are less willing to be cupped, because it does leave marks.

He told me that he can help with chemo side effects. He didn't want to give me herbs because he said I already take a lot of medicine and he wants to use foods to heal. He also wants to wait to see how I respond. These are his recommendations, mostly to take care of the cold: Cut out dairy and sweets for two weeks, as well as other mucous causers: mango, pineapple, coconut, spinach, cherry, strawberries, berries; barbecued, grilled and deep-fried food; duck, lamb, seafood, cinnamon, pepper, salt. Have less: strong flavors, coffee, ginger, garlic, onion, broccoli, celery, cucumber. Cook those vegetables in ginger, because they have cold properties, and ginger has warm. (Yeah, I know, I'm supposed to have less ginger.) Do eat: seaweed, tangerines (not the same as oranges; tangerine peel is used in respiratory medicine), more vegetables, green and black tea. Soak feet in warm water before bed. He told me to have fresh ginger tea instead of boxed. To make it: cut and peel ginger the size of your thumb. Crush it. Boil in water two minutes.

Cooling foods cause nausea, he said, and hot ones cause headaches.

I didn't ask him why I could have seaweed, which is salty, and not salt. Maybe I didn't want to know. I put kombu in my soup last night. It's my second-favorite seaweed. My favorite is dulse. I'm just remembering a blind date in Miami; I remember finding out that dulse was this guy's favorite too. It seemed fated. He was a literature professor in Maine and his parents were Holocaust survivors. But he seemed to be too intent on us having a future (which he denied later). About four years later I went to New Orleans for the MLA convention and saw him at the airport. He was still very good-looking. I heard he quit teaching and is living in the country, with a partner and a kid. (I just looked him up on Google. He's teaching writing at Cornell.)

So. Flash-forward 20 years. Breast cancer. Acupuncture. I'll meet with the acupuncturist next week to tell him how it went. Today I woke up and I was more stuffed up and my throat hurt more. I thought of how my friend B went to him (must have been years ago, because B is in the wheelchair all the time now, and there are stairs leading to the office) and was worse the next day. How we rationalize; I'm thinking, Well, he stirred everything up and that's why I'm worse. I decided to call my regular doctor for an appointment. Got one for tomorrow. After two weeks, I might need an antibiotic. I called the chemo nurse and she said that it's OK to have any antibiotic. I told her about my bad headaches over the weekend and she said that it could be from one of the nausea medicines, though I took them only Tuesday and Wednesday. She said to wait till next time and see if it happens again.

Onward. Of course when I showed L my back last night he was horrified.

The Forgetting of Elvin Hayes & Education in Nicaragua, 1989

This is a two-parter. First is about Passover. If you want to skip it, you can go right to Education in Nicaragua.

The Forgetting of Elvin Hayes

I went to a family seder last night in Highland Park--not my family's. It was presented to me as a full-bodied thing, with lots of singing, and it was. I was the odd person out. I came by myself, but there were place cards, so I got to sit by the hostess. L opted not to go; he was traumatized by his bar mitzvah and avoids ritual as much as possible. We went to B & S's seder on Monday, for which L gave up watching the Florida-OSU game in real time. (He recorded the game with our neighbor Z's TiVo to watch after the seder. We won't talk about how during the meal X announced the score at the end of the second half.) I have long had an image in my mind of the seder of my dreams. It's like a class of my dreams. Everyone is smart and engaged and wants the reading and discussion to go on and on. Our family has never had seders like that. They can't be coerced. They aren't big singers. My aunt was a good singer but she died. My other aunt's second husband was a good singer but when my aunt died he went elsewhere for seder. My father was an off-key but enthusastic singer, but he died. His rendition of Khad Gadya, one of the songs at the end, sounded like a football cheer in Hebrew with Yiddish pronounciation. I have not heard the like of it since. This generation of children is quiet and not show-offy. You need people with bluster to carry songs all the way through. They say that cantors are frustrated opera singers. We need frustrated Broadway musical actors at our seders.

The seders I lead are big, maybe 25 people, and the people are usually sitting at five different tables. That makes it hard for discussion. For a while we would go around and say who we missed, but then it got too sad. At the end of the service, we say, Next year in Jerusalem. Meaning, next year perfection. In that spirit, we've written wishes on index cards and then read wishes written and saved from the year before. That got too sad, too. Then we'd talk about Passover memories, but they were mostly generic. I wrote a series of "I remember"s, linked to different eras, such as: I remember how hot my the soles of my feet would get when we were walking in the desert.... I remember blisters all over my hands from the bricks for the Egyptians... OK, I can't think of any of my better examples. I would pass these out to everyone, and each person would read a different one aloud. Was this meaningful to my constituents? I don't know. Was it just an exercise in literary ego?

I started leading the seder in the first place when I encountered an egalitarian haggadah written by Aviva Cantor and published in her magazine, Lilith. My father let me incorporate it into his service, which used a pre-war Reconstructionist haggadah and featured illustrations of androgynous men wearing loose shifts. I don't remember when this was, but by 1990 I had photocopied haggadahs for everyone, using several elements and probably violating several copyrights. What was nice about the book haggadahs was the leader (my father, and before him, his father) would make notes, so you would see, next to the Mah Nishtanah, said by the youngest child, the name of my aunt who was now very much an adult.

I've been looking for years for new information and readings to include, and this is the secret--there's not much out there. Yes, there are ideas for acting out scenes from the exodus; there are songs about the plagues that God brought on the Egyptians ("Frogs frogs frogs") and a song about the four sons, to the tune of "Clementine"; there are passages that describe the important role of midwives Shifra and Puah, and of Moses' sister, Miriam; there are questions meant to be thought-provoking, like: What are some modern plagues?; there are haggadahs that talk about Israel's guilt in Sabra and Shatilah; you can talk about the Warsaw Ghetto and sing the partisan fight song; there are prayers re-written to include the feminine aspect of God--but the truth is, most haggadahs are the same. They tell the same story, about the Jews coming into Egypt, and being enslaved there, and being led out by God, and becoming thusly a people with a land. There are many things to talk about, but you can't force discussion. Our most heated discussion Monday night came after dinner, when we were trying to figure out who the Maccabees had fought against (I know, wrong holiday). The dinner guest to my right, a half-Jewish, atheist high school senior in a Catholic school, had perceptive anti-religious barbs to deliver, which we all agreed with. She was used to challenging the nuns. How can you engender a discussion in which everyone has something at stake? I don't feel like "sharing" what I feel enslaved to in my personal life, or listing, condescendingly, the golden calves of America. I don't feel like naming Jewish women I admire. (An aside: At a seder two years ago, in response to this request for naming, my Republican cousin said, Condoleeza Rice.) To me, the inescapable question is, Why are we here? but that may not be so relevant after all.

At the family seder last night, our leader was like a good teacher. We read through the service and he would offer tidbits now and then. That every time there's a pivotal point in the Bible, there's a woman. There's a famous paragraph in the haggadah in which five rabbis are mentioned. This paragraph usually falls, by chance, to a young reader who stumbles over all their names. We are told that they stayed up all night discussing Passover. This is an object lesson for the rest of us, who've been through the story dozens of times: Even the greats found something to discuss. They were splitting hairs, such as debating whether "all the days of your life" included the nights, both actual and metaphorical. Another interpretation of their all-nighter is that they were staying up to plan the Bar Kochba rebellion (132-135 CE) against the Romans, who were oppressing the Jews. What our leader did last night was tell a little about each of these guys we'd been naming every year. Rabbi Tarfon, for example, was famous for saying, "It is not your job to finish the task, nor are you free to avoid it all together." And another was known as the last holdout to favor making chicken pareve.

Each family has its own ways of doing things and I missed our ritual of reciting a counting song, "Who Knows One?" in English. Everyone tries to say the last paragraph about numbers 1-13 in one breath. This family sang it in Hebrew, and kept going faster and faster with each added number. I also missed singing "Elvin Hayes" instead of "El b'nai" in the chorus to "Adir Hu." This year I realized that you could also substitute "Karl Rove" for "beka'arov" in the chorus. I will have to tell my people next year.

As I'm writing this I'm going through my store of haggadahs and sifting through the Internet. And I'm finding that information does matter. I disagree with what I said a few paragraphs up.
(Do I contradict myself? Very well, then, I contradict myself.) For example, I'm re-reading the Jewish Labor Committee's haggadah and finding a story about the moment the Jews were leaving Egypt and the Pharoah's army was charioting right behind them. In this story, the Red Sea did not divide right away. The Jews panicked. Then one guy, Nachshon, waded in, almost up to his neck. He kept the faith--and the waters parted.

I'm also thinking that discussion might not be necessary. Last night there was some back-and-forth but I wasn't champing at the bit to make one point or the other. Have I longed for *robust* (the current buzz word) discussion from my people as proof that they were listening? Maybe they were listening quietly all these years. It can be enough to learn something interesting. Dayenu.

Education in Nicaragua, 1989

Inflation made the value of the currency change at least every week. Every week a bus token cost more. I have still one piece of Nicaraguan paper money with three zeroes added on, printed officially by the national bank. The electric grid was unstable. It wasn't unusual for the lights to go out in the middle of class. Our room didn't have any windows. There would be certain days when we didn't have running water. Water service was rotated by neighborhood. The night before the water wasgoing to be cut off, we would fill up barrels with water. The plumbing wasn't so great to begin with. You weren't supposed to flush anything, even toilet paper. There was a wastebasket next to each toilet for you to drop your used paper. And you'd need to provide your own toilet paper. This was in the capital city. It had buses that worked, though they were always filled beyond capacity and it was ordinary for young boys to hang from the outside of the bus. There were pay phones, or at least places where there had been pay phones, but every part of the apparatus had been stripped. I could never figure out where I was or how to get anywhere. The street names were informal and most were hand-written signs, named after the local resident who had died with the revolution. My address was something like: three blocks north of the Esso station, a block from where the baobab tree used to be. There were cabs, but for some reason a driver would not turn around. You had to be going in the same direction as the cab. I was teaching English to government health workers, lab technicians with the equivalent of a master's degree and nearly starvation wages. There weren't any photocopying machines. I'd brought my own exercises with me and just went by feel. Everyone was at a different level. The previous teacher, I'd been told, had drilled them on verbs. I'd been told in a way that made me feel I should do the same. So I did some time, or I would help them translate English instructions that came with a machine or instrument, or ask them what they had trouble understanding. They asked me how to pronounce "grocery" and weren't satisfied because they expected a three-syllable British pronunciation. I taught the most advanced student the phrase, I have a time conflict, then wondered if that was idiomatic enough. He grew very attached to that sentence. One day I went to the bathroom at work, and started to toss my used paper in the trash. In the wastebasket I saw something there that looked familiar; it was an exercise from a few days before. I said to myself, At least I know that the handout was useful.

Passover--First Day--Hasids

The first day of Passover comes after the first night.

Part of the reason we celebrate/observe (Lenny Bruce said Jews observe; goyim celebrate) Passover or any other holiday, aside from nostalgia, is the longing for the belief of our ancestors. They were sitting around a seder table, just like we are, and they actually believed. At least we think so. We would like to think so?

Can we think so without being condescending?

The Hasidic story of the disciples who go out into the woods. Here it is, told by poet Coleman Barks, translator of Rumi: "When the Baal Shem Tov had difficult work to do, he would go to a certain place in the woods, where he made a fire and meditated. In the spontaneous prayers that came through him then the work that needed to get done was done. A generation later the Maggid of Meseritz was given the same work. He went to the place in the forest and said, 'I no longer know how to light the fire and meditate, but I can say the prayers.' What needed to happen, happened. A generation after that it came to Moshe Leib of Sassov to do the work. He went into the woods and spoke, 'I do not know the fire meditation or the prayers, but I still come to this place where the Baal Shem and the great Maggid came. I hope that's enough.'
And it was. After another twenty years, Israel of Rishin was called to the task. 'I do not know the place, the fire, the meditation, or the prayers but here, inside, sitting at table I can tell the story of how it used to go.' The story had the same effect as the wilderness retreat, the fire meditation, and the prayers that came to the Baal Shem Tov, the Maggid, and Rabbi Moshe Leib.' One might follow the sequence of the anecdote and say that it shows the diminishing of a living tradition. Or one can hear in it that the mystery of doing work takes many forms, and the same continuous efficacy is there no matter whether it's the Baal Shem in solemn silence before the fire in the woods or, generations later, Israel of Rishin indoors telling the story to a table of friends. The vital God-human or human-God connection can break through anywhere at any time. There's no diminishing of it and no fading of grace."

OK, I was with him till the God part.

Let's call it transcendence.

To further analogize--The Hebrew word for Egypt is Mitzrayim (from the Hebrew metzar-"a narrow, tight place of being"). The exodus from Egypt was going out of a tight place. The interpreters ask, What is the narrow place that you are trying to escape from?

From Martin Buber's Tales of the Hasidim: Early Masters: "The maggid of Koznitz said: 'Every day, man shall go forth out of Egypt, out of distress.'"

And: "A hasid complained to the rabbi of Lublin that he was tormented with evil desire and had become despondent over it. The rabbi said to him: 'Guard yourself from despondency above all, for it is worse and more harmful than sin. When the Evil Urge wakens desire in man, he is not concerned with plunging him into sin, but with plunging him into despondency by way of his sinning.'"

And yet I, Cancer Bitch, see today's Hasids on the train or the street, with their black hats and payess (ear locks) and I think, Such backward fundamentalists these people are. These men will not touch me because I am a woman, and they do not think I am a real Jew because I do not believe in the Torah as the divine word. Feh. But--

Such is the power of story.

Do not mistake the teller of the story for the story.

The Fifth Question

The Four Questions are asked on Passover, beginning with, Why is this night different from all other nights? which is also the punchline of a joke about Sir Lancelot.

The fifth question is how and why we celebrate the holiday if we do not believe in the historicity of it, that we were slaves in Egypt, and if we do not believe in a diety; if we do not put any credence in the central covenant we read about on Passover, the covenant with God—that He told Abraham I will make your people slaves but after 400 years I will liberate them and they will be a great nation. That as the result of the torture of the tribe, they will emerge a cohesive group and they will have a land of their own. This is the same lesson that some people draw from the Holocaust: The Jews were tortured and burned in Europe and now they emerge, liberated with a land of their own.

It has been said that modern Jewish practice is ancestor worship. We put on this ritual and set this table and bake this kugel because bubbe did it. We take a little bit of the tam, the taste, of the holiday and swish it in our mouths a bit, and wait for the memories to blossom, Proust-like. Proust was Jewish but I don’t know where his Jewishness lay. Or half-Jewishness. The New York Times years ago had an article about Passover macaroons, quoted a Jewish baker saying the canned ones set off Proustian associations.

I always wanted a seder where people argued and discussed and we did both tonight. But we did not get to the answer to the central questions: What does this mean? Why are we here? What do we do about the readings that we don’t like? Why is the father so harsh when he tells his child that he wouldn’t be taken out of Egypt because he doesn’t consider himself part of the tribe? We laugh at him and then we turn the page.

The story is true, says the chancellor of the Jewish Theological Seminary, even if it didn’t happen, just as great literature is true. The exodus is one of our central myths. Our daily prayers (if we were to say them) mention being taken out of Egypt. I have read more than a dozen haggadahs that try to make the story and the holiday relevant. If you do not believe, you have to think your way around so much. You have to change the donne’ of every haggadah and say, There is a story that our people have told, and it is not historic. Yet it has great meaning for our people and it has mythic structure. You have to qualify everything.

And after you’ve qualified everything, you say, This is a holiday in my bones and blood, its cadences are driven into me. And that’s why I’m here. And while I’m here on a purely emotional level, that is the reason for my return, I want to get some intellectual and moral sustenance. But all that is so much work. But to not do that is to be reduced to the level of a child absorbing a fairy tale without question, because it’s so familiar.

Go, Cancer Bitch, Go

This is from my friend L (not husband L), who was inspired by Go, Dog, Go!, which she recently purchased as a gift.

(With apologies to P.D. Eastman)

"Go, Cancer Bitch, Go!"

Here's Cancer Bitch.
Bark, Bitch, Bark.
Go, Cancer Bitch, Go!
Cancer Bitch gives a good-bye breast party.
Dip, Bitch, Dip.
Here are red bitches and blue bitches and green bitches.
Dip, Dip, Dip!
Cancer Bitch wants a wig.
---Do you like my wigs?
---No, I do not like your wigs!
--Good-bye.Cancer Bitch sees Elizabeth Edwards.
---Do you like my husband?
---No, I do not like your husband.
Here are Bitches at a reading of Cancer Bitch's book.
Here are Bitches at a workshop with Cancer Bitch.
There are blue bitches writing, red bitches laughing and green bitches crying.
Here's Elizabeth Edwards again.
---Do you like my husband now?
---No, I do not like your husband!
---Cancer Bitch starts a blog.
Crab, Bitch, crab.
Go, Cancer Bitch, Go!

My Most Useful Teaching Moment

Inflation made the value of the currency change at least every week. Every week a bus token cost more. I have still one piece of Nicaraguan paper money with three zeroes added on, printed officially by the national bank. The electric grid was unstable. It wasn't unusual for the lights to go out in the middle of class. Our room didn't have any windows. There would be certain days when we didn't have running water. Water service was rotated by neighborhood. The night before the water wasgoing to be cut off, we would fill up barrels with water. The plumbing wasn't so great to begin with. You weren't supposed to flush anything, even toilet paper. There was a wastebasket next to each toilet for you to drop your used paper. And you'd need to provide your own toilet paper. This was in the capital city. It had buses that worked, though they were always filled beyond capacity and it was ordinary for young boys to hang from the outside of the bus. There were pay phones, or at least places where there had been pay phones, but every part of the apparatus had been stripped. I could never figure out where I was or how to get anywhere. The street names were informal and most were hand-written signs, named after the local resident who had died with the revolution. My address was something like: three blocks north of the Esso station, a block from where the baobab tree used to be. There were cabs, but for some reason a driver would not turn around. You had to be going in the same direction as the cab.

I was teaching English to government health workers, lab technicians with the equivalent of a master's degree and nearly starvation wages. There weren't any photocopying machines. I'd brought my own exercises with me and just went by feel. Everyone was at a different level. The previous teacher, I'd been told, had drilled them on verbs. I'd been told in a way that made me feel I should do the same. So I did some time, or I would help them translate English instructions that came with a machine or instrument, or ask them what they had trouble understanding. They asked me how to pronounce "grocery" and weren't satisfied because they expected a three-syllable British pronunciation. I taught the most advanced student the term, I have a time conflict, then wondered if that was idiomatic enough. He grew very attached to that sentence.

One day I went to the bathroom at work, and started to toss my used paper in the trash. In the wastebasket I saw something there that looked familiar; it was an exercise from a few days before. I said to myself, At least I know that that handout was useful.

El Repliegue

Today I felt better as soon as I woke up, though I'd only slept about nine hours, and the night before I must have slept 13. And I can't define or delineate what is better. I still had and have the jittery, run-down-feeling headache. But it didn't bother me as much. How difficult it would be for a doctor to treat me. I'd say, I feel the same, except it was bad yesterday but not today, and I can't tell you how it's different. With this sort of headache, I feel the pain as dispersed pieces of glitter floating in my head, as suspended in gel. I could say amber, but it is more like gel, soft. And I feel I can't unfurrow my brow.

I was thinking yesterday about motivation and encouragement and I thought of the repliegue in Nicaragua in 1989. This is its definition, from La Barricada International , 1995: "an annual re-enactment of the Sandinistas' June '79 tactical retreat from Managua to Masaya." I couldn't have said it better. Even at the time, when people explained it to me, I knew it was a route the guerrillas took, and that two young people in particular had died (because their names were on the t-shirt I bought), but I was unclear about why it was being re-enacted and what exactly it had been. I should say "martyred" instead of "died" because that was the lingo. Young people who were alive were revolutionaries. If they were dead, they were martyrs, and local streets were named after them. Now I'm searching around the Internet to remind or educate myself, and see that it was not a retreat qua retreat that was being celebrated, but a strategic withdrawal, after which the revolutionaries came back to Managua in triumph. I was in Managua on the 10th anniversary of the revolution. I went because I wanted to figure out how the revolution was doing, and whose fault it was. Were its weaknesses due to the Sandinista leadership or to US support of the contras?

Of course, I never figured it out. I spent the summer teaching English to government health workers at the equivalent of the NIH, except it looked like a run-down elementary school with chickens in the yard. I was sick (though I didn't have parasites; I had that checked out) almost the whole time, and came back, my friend S said, almost too thin. I was so sick and weak that I decided not to go on the 19-km. repliegue. It was a Friday afternoon. Then I suddenly decided to join; I was lonely. I started walking and caught up with the march. I started talking to whoever I happened to be walking with. Somehow I found one of the few people I knew who was on the walk, this guy who had come to Nicaragua with the same volunteer program that I had. I joined him and his Nicaraguan host and we slept on the sidewalk in Masaya overnight. In the morning we took the bus home and my friend was pickpocketed. (Another volunteer in our program used to say that he felt like he was a tree that the Nicaraguans would pluck. This was true. They were master pickpocketers. On a crowded bus--the only kind--I lost a camera that was buried in my backpack. And I was cradling the backpack in front of me. I lost a small notebook that had the address of a woman I was going to exchange language lessons with. I never saw the notebook or the woman again. We Norteamericanos used to fantasize about placing mousetraps in our backpacks. I also used to fantasize about getting the pickpocketers on American TV; they could walk through the studio audience and impress everybody with their sleight of hand.) Well, we were there as volunteers, right? To give what was needed? So what was the problem? It was in Nicaragua that I also learned how to give graciously. I had some drawing paper that a friend said another friend would like to have. He said that instead of just leaving it for him, I should write a note. And I did. I also bought someone an entirely superfluous wedding present. I should have given her American money. I still cringe thinking about it.

What is the lesson for me, for my capitalista-individuista psyche about my experience on the repliegue? I didn't expect myself to join the march. No one expected me to. But because no one expected me to, I did. And I was fine. What does this say about motivation and walking when you're weak from chemo?

That if people tell me not to, it's easier to motivate myself? That I'm tougher than I think? I know that often if little is expected of me, I do very well.

Case two. Eight years before this, I was an intern at the Miami Herald. During the first week, an editor said I would need to learn to use the computers. He said, Oh, I'm sure you're a quick study. And I was.

Case three. The lovely and talented Itabari Njeri was doing a criminal justice series at the Miami Herald. She escaped to a fellowship, and I inherited the series. Her editor said to me, This will be great, unless you blow it.
I hated doing the reporting; one of the main sources smoked and littered while he drove. I was afraid I wouldn't write well. A senior reporter ending up helping me, and then I escaped too.

So in one case, there were no expectations, and I excelled. In the other, expectations were high, and I excelled. In the third, there were high expectations, expressed negatively, and I did not do well. What does this prove, Mr. Behavioral Scientist?

I try to lessen my students' anxiety. I say, I'm sure you'll do a good job. Does this help? And am I sure? Am I telling the truth?

It makes me mad to read in Groopman's book about experiments in which people with asthma are told they're getting a dose of albuterol, and then they're able to breathe easily despite being exposed to irritants. But of course, one of those doses of medicine is really saline. I hate being lied to. I hate people telling me asthma is psychosomatic. I hate the idea of people--even human guinea pigs who presumably signed the official forms that said, in essence, OK, lie to me--being lied to. But these were the experiments, as reported to Groopman. I know I keep hearing in my head the hearty voice of the chemo nurse on the phone: I'm sure you'll do great. She said that on two occasions before I asked her: Why do you think that? And she had a reason that I don't remember. Probably having to do with the improved anti-nausea drugs. And I haven't been very nauseated. Of course it is the first week. She said I might have heartburn and I have. She said I might have constipation and I haven't. Yet I know it strengthens me to hear that cheerful, confident voice in my head.

We want to predict the future. We want to know that we'll be safe and happy. People who pray build an image of how they want things to be. They exhort or implore the deity to bless and take care of ... and ... and .... This imagining is powerful and can change physiology. Yet a part of me fights against this. It's too too ... invisible.

Two Miles

I walked two miles to the Bourgeois Pig Cafe, the coffe house where we were married. I didn't feel better or worse when I got there. I got a small decaf latte and read A Contract With God, the first graphic novel, which my student T had sent me. It is so dark! Will Eisner wrote it based on the death of his daughter from leukemia. Later tonight I gave it to B and S to read. Their son J died of cancer in 2001. Tonight S wanted to say something sad about J and chemo and I said, No, don't say it, and B said, No, don't say it, and L said, No, don't say it. And she didn't. When I talk about my port and she talks about J's port, all seems doomed. Cancer means J and J means death from cancer. I saw him after he died. He was lying in his bed upstairs. He'd been dead a few hours. They didn't know what to do. He'd been alive the night before, talking to his doctor and patient advocate from the hospital, who'd come to visit. The advocate was from a local restaurant family. And then I got the call from G in the early morning that J had died. We all sat around the table, the same table where we had chicken soup tonight. They hadn't known what to do. I mean, S had just been trying to find clinical trials J could be part of. They called the synagogue and the hospital, which sent an ambulance, I think. Another friend carried J downstairs. When his twin came home from school, early, there were his parents' friends sitting around the table looking at him. I think I hugged him. He said something like, It's OK. Meaning, the death of his brother was OK. Because what else could he say? He had to shrug. Because there were the adults there. And then four or so years later a friend of the family died, another young man, and the adults were sitting around the table and M went up to the twin and said, I'm sorry that you've lost your friend.

There is so much loss. And on the other hand, S's mother had breast cancer 20 or so years ago and is alive in South Florida and Cleveland, depending on the season. Alive and with husband. They go to a seder at their complex and there are no young people to say the Mah Nishtanah. Which is supposed to be recited by the youngest person there.

S gave me Excedrin and then a migraine potion from Whole Foods. Both seemed to work a little bit. I don't have a migraine, just a feeling-run-down jittery kind of headache that won't subside. Much.

Eisner's drawings and stories are so much about suffering. The first begins with eight days of rain. Rain and poverty and unhappiness. Tonight B slumped down a few times in his wheelchair. Just not enough strength I think to keep his head up, back straight. How does Stephen Hawking do it? I asked. How does he channel all his living into his intellect? He doesn't really have a voice, said S, just a mechanical gizmo. How does he go on? How did he find his wife? What is it like to be the wife of Stephen Hawking?

All answers, of course, can be found on the Internet. He has ALS, diagnosed when he was 21. He is divorced from his second wife. He had been able to speak, but his voice was becoming more and more slurred, and then he lost speech altogether when he got pneumonia and underwent a tracheotomy. He uses a speech synthesizer. Its only problem is that it gives him an American accent. As he says on his web site: "I have been lucky, that my condition has progressed more slowly than is often the case. But it shows that one need not lose hope."