Democracy Sometimes

What Is Resistance (Another M19 Gone)?

2008-04-01T01:13:32Z

Another March 19 has come and gone, leaving those of us who organized protests of five years of war to muse about what we accomplished.

The actions here in San Francisco were pretty successful. We had more people participating than we have had in the last four years, though unsurprisingly, not close to the numbers who came out in 2003 when the war first began. There were 165 arrests, most of people who chose to be arrested, and that was a lot more than any single action in the last four years as well. Which in itself is interesting, because in the 1980s, when the U.S. was involved in covert wars in Central America that hardly anyone knew about, we used to occasionally have actions where 500 people got arrested.

It’s not that getting arrested is the be all and end all of activism, it’s just that it’s one indication of how much personal risk people are willing to take to express their opposition to a government policy. I always assumed that the more egregious the government’s actions were, the more people would be willing to engage in resistance that carried some risk to themselves. But in fact, the opposite has proved true, and I think there are a lot of reasons for that.

First, it’s been several generations now since there was a major example in this country of mass nonviolent action actually being effective in changing policy. In the eighties, the civil rights struggles of the fifties and sixties, and the antiwar actions of the sixties and seventies, were still fresh in a lot of our memories. There were even people who had been involved in the labor movements of the thirties who were participating in those actions. But people who are 35 and under today don’t even know about most of the movements of the eighties which used direct action: the anti-nuclear movement, the movement against the contras in Nicaragua and the death squads in El Salvador, the sanctuary movement, even the anti-apartheid movement in its grassroots community aspect. It seemed a couple years ago that the immigrant rights movement would provide a modern example, which like the Black civil rights movement, might have rippled to create an activist awakening among other communities. But, for reasons that not being a part of that community, I can only speculate about, that massive uprising quickly dwindled to a movement of the hard core.

Second, a friend pointed out, with cable TV, there are so many more options for what to watch, and that’s compounded by the nearly limitless resources of the internet, while in the sixties, seventies and eighties, everyone was watching the same news. The opportunities to opt out of news altogether mean that even the rare glimpses of the Iraq war on the mainstream television news go unseen by a majority.

At the same time, the overwhelming barrage of disturbing images and stories from all corners of the world causes people to shut down. A few weeks ago, I was listening to the Winter Soldier hearings at work, and when people would come into the center where I work alone on Fridays, I would tell them what it was. “What’s a war crime?” asked one man, a 30-something African American who is a supervisor in the records department. I explained briefly and he was momentarily shocked: “We’re doing that?” But then he said, “I like to maintain a positive outlook, so I can’t think about things like that.” My coworker who came in at 3:00 p.m., a 60-something working class Jew and life-long leftist, said something very similar: the news is too upsetting, and she is done thinking she can do anything about it, so she tunes it out.

On March 19, I was part of a group of about 30 people who walked around in orange jumpsuits and hoods (and a few of us in masks of prominent politicians) doing theater in areas heavy with shoppers and tourists. Many people came up to us and said, “Thank you for being out here,” which at first was gratifying but quickly became deeply disturbing. What will it take, we started to ask each other, for people to move from saying, “Thank you,” to saying, “What can I do?”

I used to think that actions would do that, that people might not decide they could do what we were doing, but seeing us take action would motivate them to think about what they were willing to do. In fact, I think that once that was true, and I think the consumer mentality that the ruling class has worked so hard to promote over the last twenty years has destroyed that possibility. Whether it’s a vigil, a blockade or a die-in, people see it as the same as a billboard, a street band or religious fanatics ranting at them – part of the ambience, something maybe trying to elicit a reaction, but not an invitation to DO anything.

It is, of course, hard to convince people to participate in activism when you can’t point to any specific action and say, “Look at the effect it had.” When I told an Israeli friend who is also a U.S. citizen about the March 19 actions, she pissed me off by saying, “That doesn’t do anything. If everyone stopped paying taxes, that would do something.” It pissed me off because one, there is no chance that _everyone_ is going to stop paying taxes, or even that a lot of people are going to do it. It is extremely difficult to actually stop paying taxes; you can’t have an over-the-table job, you can’t have a bank account, and you can’t own any property. So only a few people are going to do it; a few people already do, and it’s a noble act of conscience but not something that actually hurts the government as much as the government can hurt them. And second, it puts the cart way before the horse. If “everyone” was about to stop paying taxes, we certainly would have been able to get the 68% of everyone who opposes the war to come out to a peaceful demonstration, and we can’t even do that. The point is not the specific act, but that we have to figure out something we can get everyone who opposes the war to do, and that in itself is a monumental task which we are nowhere near being able to accomplish.

The warmakers have made it clear that they don’t care what people think. Cheney said it flat out in the runup to March 19: “We don’t make policy based on opinion polls.” They do care, though, what people do, at least if what those people are doing makes it hard for them to continue governing. So the $64,000 question is, what is there that masses of people would actually do that the government would care about? It would not necessarily be one thing, but some set of things which would signify actual resistance, not resignation.

We can’t just sit around waiting for everyone to stop paying their taxes, but we do need to reframe the concept of resistance. One thing we need to stop doing is equating resistance with demonstrations. I think demonstrations are important, but they are only one kind of resistance. There are people who are never going to go to a demonstration, because, as my friend Jean says, they are just convinced that’s not something people like them do. So we need to open up discussions which will elicit “culturally appropriate” (credit to Jean again) forms of resistance for different communities. But that’s not going to happen by itself, and it’s not as easy as it sounds because anything that is effective is going to come in for repression. If enough people start hanging “Stop the War” signs in their windows that the government feels that’s a threat they can’t ignore, they’re going to outlaw hanging signs in windows.

On the other hand, I’m not sure that if that happened, fewer people would be willing to do it. Repression can energize resistance as often or more often than it discourages it, because people figure that the government doesn’t repress things that aren’t making a difference.

The other day, I got an email at work, from a secretary forwarding a job from the attorney she works for. I’m not sure whether it was the secretary or the attorney, but one of them had as her epigram the quote from Gandhi, “First they ignore you, then they laugh at you, then they fight you, then you win.” I thought, if someone who works at a big corporate law firm chooses that tag line for their email, maybe we’re closer to winning than I thought.

Are we the ones we're waiting for?

2008-03-17T08:39:26Z

March 16, 2008

[I know, I know, I haven't posted anything for months. It's shameful.]

For the last four months I've been focused on March 19, the fifth anniversary of the second war on Iraq, and now it is here. My goal was to reinvigorate a militant anti-war movement this season, and I would say that it looks like we have done that. Direct Action to Stop the War II, a group (or grouping, which remains to be seen) initiated principally by people who were involved in the shutdown of San Francisco in March 2003, has pulled in a couple hundred people, mostly in their 20s, who haven't been involved directly in organizing for the last several years, and they have good energy. On the other hand, while a lot of people have come to meetings and plan to participate in actions, despite very good intentions, we have somehow not succeeded in getting a lot of them involved in doing work, with the result that it still feels like a few people are taking most of the responsibility, a lot of us have too many different responsibilities to fulfill them all well, and the very ambitious actions feel a little underorganized.

Yesterday was the first of two actions we organized for this anniversary, a rally and blockade at the Chevron Refinery in Richmond (a city just north of Berkeley). The rally was organized mainly by community groups which have for a long time been battling Chevron on environmental issues, and are now fighting a proposed expansion of the refinery. It drew a good crowd -- estimates differ of how good, my estimate was 800-1,000; the Chronicle said "more than 300", other activists put it somewhere in between and I imagine the organizers would say 1,500. There was great music and spoken word mixed in with the speeches, few of which I heard because I was involved in doing a lightning direct action training/orientation for about 20 people who were just plugging into the blockade yesterday. This was my first experience with a super-short training (just under an hour) and I have to admit, you can get a lot in if you're really focused.

One thing that was kind of disappointing about the rally and the march that followed was that most of the community participants were white (though there was prominent leadership by two African American men), in a community that is overwhelmingly African American and Latino. Even more disappointing was that very few people from the Richmond community participated in the blockade. Neither of these facts was shocking, given that the sponsoring organizations in Richmond were groups like Communities for a Better Environment and Richmond Greens, along with West County Toxics Coalition, an environmental justice group. A friend, who was arrested in yesterday's action at Chevron, pointed out that at the same time there was a community-wide mobilization in the African American churches that brought out 1,000 volunteers for a day without killing -- Richmond has one of the highest murder rates in the state. The fact that we (or at least I) did not even know about this parallel action in the same small city highlights the fact that it is harder than we sometimes want to admit to bridge the huge cultural and political divides that exist in our society.

Last week, there was a panel on direct action as part of a larger strategy for anti-war movement building. At one point, a woman who identified herself as "poor and old" spoke up to say, "Convince me, and others like me, that we should take the risk to participate in your direct action." Asked to restate the question, one of the panelists said, "She is bringing up the point that many people who are poor can't take the risk of participating in actions where they might be arrested." The woman shook her head. "No," she said, "I want to take the risk. I want you to tell me why I should take the risk." This exchange (which I'm totally paraphrasing and hopefully not further mischaracterizing) really made me think.

The statement that the panelist made, that people who are poor and/or people of color can't risk arrest by participating in civil disobedience/direct action, is invoked so often in movement circles, it's like a mantra. While it's true that it's a lot easier for people with class and race privilege to blithely throw ourselves into the arms of police, the mantra irritates me. The fact is that poor people and people of color have done direct action a lot more than rich white people have. If you make a list of campaigns that utilized civil disobedience or direct action, or if you look at one of the lists that others have made, 80% of the campaigns are going to be ones led by people who were either poor or of color or both. To name just a few: the campaigns against apartheid in South Africa (both here and there); the civil rights movement; the labor movements on every continent; the occupation of the refineries in Nigeria a few years back; the rebellions against privatization in Argentina and Bolivia; the first Palestinian Intifada. To say that people can't take the risk of direct action is to let ourselves off the hook. What I think the woman at the panel was getting at is that most people won't take the risk because we're the ones who are asking them to, and they have no reason to trust us, or to think that our interests are theirs.

The flip side is that only a tiny fraction of the people who can well afford to take the (minimal) risk involved in doing direct action in San Francisco or Richmond are going to take it. And for this we also let ourselves off the hook, by telling ourselves that they're not doing it because they don't agree with us, they're in favor of the war, they're unenlightened or they're disempowered. But it's not true. Over two-thirds of people in this country oppose the war; in the Bay Area, it's probably closer to 85%. In March 2003, something like 20,000 people participated in the direct action in San Francisco, which was unprecedented. That was 10% or less of the people who had participated in marches against the war before it started, less than 0.4% of the population of the Bay Area.

I'm not trying to say that most of the 6,000,000 people in the Bay Area could be convinced to risk arrest or engage in some other form of active resistance. But a lot more of them could be than the 500 or 1,000, or less, who are going to do it this year. And they too are not going to do it because of us, because of what my friend Gopal calls our "self-marginalizing behavior." Most of them are not going to do it because we're not going to ask them. We're not going to ask them because we think they'll say no, or because they're not the people we want, or because we look down on their lifestyles or their fashion sense. We might hand people a flier at BART on Tuesday or Wednesday, but few people decide to join an action, especially one that carries an unfamiliar risk, because some stranger hands them a flier. They might do it if a coworker asked them, or a family member, or someone in their church choir or someone in their cancer support group. But I'm not going to ask my coworkers, because they'll say no, and I'm not going to ask the women in my support group because I think they'll think I'm weird.

At a meeting of Direct Action to Stop the War in January, one of the few African American women there said that in her community, the attitude toward the anti-war movement is "What have they done for us lately?" I looked around the room and I thought, honestly, a lot of the people there have done a lot. There are quite a few people in this grouping who work for community based organizations, for free or for pay. There are union organizers, teachers, counselors, nurses, people who work on immigration rights, people who work on housing rights, people who work against gentrification. What those people haven't done, though, is bring the people they're working with in those community-based organizations to this anti-war organizing. I don't know if that's because they're embarrassed to invite people to an almost all-white, class-privileged group, or because they have invited people and they don't want to come. I know one friend said some of her friends said they didn't want to go because everyone is white, and she said, "Well, if you come, they won't be." But they didn't.

Alliance building across race and class is really difficult in this country, and it seems to me that it gets more difficult all the time. I've been in a lot of groups that have tried to do it over the years, and most of them failed. But one reason we fail is because we don't acknowledge how much time it takes. If we're serious about building alliances with people who don't know or trust us, that's what we're going to be doing for the next six months or a year or more. We're not going to be able to build the alliances and organize a major anti-war action in four months. We can't go to a community where we're not known with our agenda, and say, "Want to do this?" We have to go with no agenda, to support what they are doing. After we've been around for a while, shown ourselves to be reliable, then we might be able to say, "Hey, you know what else I'm doing?" and then maybe some of them would say, "Well I might be interested in checking that out." And then again, they might not.

But we need to realize too that if we did that, we would not be organizing creative, militant anti-war actions, and that feels pretty important right now too. So maybe --I'm not saying it is, but it's possible -- it's better to just admit that we're not who we wish we were and concentrate on doing what we can do. Or maybe, we should think about the risks we have not been willing to take, and what it's going to take to get us to have that conversation with our families, our doctors and our accountants.

katrap40 @ 2007-11-20T13:36:00

2007-11-20T21:43:20Z

November 19, 2007

My next-to-last day of radiation, I was walking home and I passed a tattoo parlor. It suddenly came to me that what I wanted to do to celebrate being done with all my intensive treatment (as opposed to the hormone therapy which I will now be taking for five years). Though I had vaguely thought about tattoos before, I never really wanted one, but once I had the thought, I never questioned that it was the thing to do. The next day the nurses and doctor asked me how I was going to celebrate being done and I told them, and I was surprised that no one said, “Really?” or “Are you sure you want to do that?” or even “Don’t get it on the arm where you had your lymph nodes removed” (very important because of the risk of lymphedema). They all said, “That’s a great idea!” The medical assistant showed me a few of her 11 tattoos. The nurse asked me what I was going to get, and although I had not actually thought about it, I said “I think maybe a phoenix.” And that became the answer.

The next day I started looking up phoenixes on the internet, and it turns out that it’s quite a scary, ugly bird. Well, actually, as a friend pointed out, it is a mythical bird, so in theory, it could look any way you wanted, but in all the drawings and paintings I found, it has a kind of scrunched up head and long beak, which I don’t want on my body. So I started looking up other kinds of firebirds, and then I thought of the firebird which the artist Eric Drooker painted on the Apartheid Wall at my friend Munira’s house in Mas’ha (anyone who doesn’t know that story and wants to can read about it at http://www.iwps.info/en/articles/article.php?id=189). He and Munira chose that image because of the sensation of freedom it creates, and I felt like I needed to bring that freedom into my life now too.

I asked around and everyone recommended the same tattoo parlor, Black and Blue Tattoo, the only all-women tattoo place in San Francisco. I looked at the website and decided that Leona, who lived in Mexico for years, would be the best person to render the bird, which Eric said was a Mexican design, into body art. I exported a picture from my video of the mural project, and printed it out in color on an 8 ½ x 11 page. So when I showed it to Leona, who indeed really got the energy of the bird, she said, “Is this the size you want it?” I hadn’t thought about it and said, “Well, it’s a little big,” but she held it up to my body and showed how with the body on my arm and the wings on the back and front of my shoulder, it would fly when I lift my arm, so I said “okay, sure.”

I was unprepared for how long it would take – almost 4 hours, but the pain never got too bad and she did an amazing job. At one point Leona said she could feel the poison draining out of my body as the pigment was going in (I had told her about the cancer and the chemo). In a way it is ironic that I chose to celebrate the end of something that brought so much physical discomfort by doing something that caused discomfort of its own, but it feels right. I know some of you will have religious or other objections to it, but I can only repeat, it feels right to me. In years to come, the memories of the cancer experience will fade (I trust), and of course the tattoo will fade over time too, but it will always be a reminder of survival.

I kept this blog in part to help others who go through a similar experience, and I can’t tell you how happy it’s made me to hear that some of you have given it to people you know who are dealing with cancer, or that it has made you feel that if it happens to you, you can get through it. So I feel like I need to be clear about one thing, just in case anyone gets the wrong idea. Getting through this has given me some perspective on my life and things in it, and of course that’s something to be grateful for however it comes. But cancer is not a gift, an adventure or a sacrament. I don’t believe everything happens for a reason (that is, it happens for some reason, but not a good reason), that it’s all part of G-d’s plan or that He never gives us more than we can bear. Cancer is a terrible thing that I wish didn’t happen to people, and to be honest, I especially wish it didn’t happen to me. And within reason, given that I’m not going to obsess or change my lifestyle completely, I am doing whatever I can to make sure I don’t get it again.

Of course, with what’s happened to our beautiful Bay in the last weeks, all of our prospects for being healthy are getting worse every day. (For people not in the area, a container ship crashed into the Bay Bridge and dumped 58,000 gallons of oil into San Francisco Bay two weeks ago; volunteers were soaking up the oil on the beaches with their hair, but the crab and fishing seasons are set to resume next week and today, the Chronicle had pictures of swimmers going back into the water.) Bless those of you who did the ritual on Saturday, I wish I could have joined you, and all of you who are continuing to do rituals or offer prayers, and of course Lisa and others who are working all the time to protect our endangered habitat.

Hair 2.0

2007-10-30T18:58:56Z

I have a buzz cut. Not something I ever longed for, but everyone seems to love it, from old friends to people at work. It looks mostly gray to me, but it’s hard to tell, there’s darker and lighter, so maybe when it grows out some it will be salt-and-pepper like before. It feels like a kitten and I can’t resist rubbing it a lot.

New growth on my head has made me start thinking about newness inside of me. I feel like I have a new life now, and while, like I said in my last post, I am going to miss my old one, I am appreciating the opportunity to kind of start again. I’m looking at my choices of what to do, and thinking about what I like doing and what doesn’t really make me happy. I’m trying to figure out what I need to do to have love in my life. Starting some new projects, making new friends. Thinking about going back to the gym soon, finding racquetball partners.

In my magical healing class last night, we did an exercise with a “magic mirror.” I had a strange hallucination, or I guess you could say vision. I have a small but painful radiation burn near my collarbone; it should clear up in about a week, says my radiation oncologist, because thankfully they finished zapping that area last Thursday. Last night I had the sense that there is something inside that area that is trying to get out through the open wound, and once it heals up whatever it is will be trapped inside me and have no way out. So I asked my healing partner to work on it. And what I felt when she started pulling out what she described as strings of red energy stuff was that it’s a lot of sadness.

This morning on my way to work, I thought about the fact that as soon as I got my diagnosis, I kicked into business mode. I didn’t want people to think I was falling apart, or melodramatizing my illness. I knew I was probably going to be fine, so there was no need to be upset. I just needed to get the surgery scheduled, it was a small, same-day surgery, no complications, no big deal. Then I found out it wasn’t going to be quite that simple, there was the chemo to deal with, but that too was unpleasant but not unusual, my side effects were contained, I was a healthy person with a little setback, a lot of people have a lot worse illnesses, etc., etc. And although I certainly had low periods -- during every chemo cycle there would be a few moments when I started crying just from the sheer misery of the physical experience -- I never allowed myself to feel sad. Sad about being suddenly in menopause, which would probably not have happened for five years otherwise. So now I almost feel like I’m five years older than I thought I was, even though I know that’s ridiculous. Sad about having my intact body cut up, even just a little, and having scars that will never go away.

Now, it’s all about to be over. At the end of next week, I’ll have my last radiation treatment. And then I will more or less be done with this. My hair’s growing back, my nails are growing back, I’ll be back at work full-time, and life will be back to normal. Other people I know are, unfortunately, getting diagnosed with cancer now and I’m thinking about how to support them. So it’s like if I don’t indulge this sadness now, I will lose my chance, and it will lie there festering inside me. Yet I don’t know if I can, because I also feel happy, to have my hair, to have my life, to have my energy, and I also don’t really have time.

Five O'Clock Shadows

2007-09-30T23:52:51Z

September 30, 2007

I feel really well. The oncologists were raving about my blood work, which is apparently really good for someone who has just finished chemo. That made me feel good, because I feel like maybe my general good health is kicking in again. My hair is starting to sprout; I have a 5 o’clock shadow on my head. My eyebrows are little barely visible strips of fuzz, an outline for me to follow with an eyebrow pencil. It seems hardly fair, that all the hair I didn’t want, like on my face, is quite visible again. But I am relieved to think that I will probably have a real head of hair by the end of the year. I am working half time; after work I rush off to radiation, which takes about 20-30 minutes (the actual process is about 10, but there’s changing, getting everything lined up, changing back). So far, I have no symptoms from the radiation. My oncologist is really into everyone using lots of corn starch like powder, all over the area that’s being radiated, so there’s a film of corn starch all over my apartment. I’m glad, though, to be using something so simple and benign and cheap, rather than toxic ointments that make drug companies rich.

Last week I had a dream. Someone knocked on my door. It was a young man I knew slightly. He asked to borrow money, and I said, “You really came here to steal from me, didn’t you?” He acknowledged it. He was sorry, but said he needed the money and didn’t know who else he could get it from. I might have given it to you, I said, but it makes me angry that you pretended friendship, when you are only thinking of me as someone you can steal from. I went outside to talk to him, and when he was gone (I think without having gotten the money, though I’m not positive), I opened my door to find that I had been erased from the apartment. It was like I had never lived there. All my things were gone, my books replaced by someone else’s books, my furniture by someone else’s furniture. I thought maybe I was confused about which apartment was mine, so I looked in all the other apartments in my building, but none of them were mine. I went around asking my neighbors, “Where do I live?” and they suggested one apartment or another, but no, I didn’t live in any of them. I concluded I did not live in the building.

When I woke up, I thought, “My house in that dream is my body.”

What “someone” – the universe, karma, G-d, Bad Luck – stole from me was the sense of invincibility I have always had, the feeling of entitlement to good health. I – the me who never got sick, who didn’t see a doctor for seven years and went without insurance for three, has indeed been erased from my body. My very first professional article, written almost twenty years ago, was about women and cancer. The lead was a quote from a cancer survivor, one of the founders of the Women’s Cancer Resource Center in Oakland. “When you have cancer,” she said with tears starting to fall, “everything in your life changes.” At 29, I didn’t really understand what she meant. Now I do. Even if I wanted to go back to my old way of ignoring my physical self, the health care providers I have brought into my life wouldn’t let me. I would have to move out of the area to get away from the constant schedule of appointments. They are making appointments for me three and six months in advance. Although I am happy to say that it’s been a month or so since I swallowed my last drug, I do have a shelf full of naturopathic supplements I’m supposed to take every day, though I admit, I’m not all that good about it. I worry more than I ever did about losing my job, and I couldn’t quit unless I had another one, because I would never qualify for individual insurance.

From this year forward, I’ll always have cancer in my life. The memory of the chemo ordeal has already started fading, and in some years, I am sure it will be a distant echo. I hardly intend to let cancer take over my life, but I’ll always have that worry in the back of my mind.
A lot of people have asked if they have succeeded in shrinking the cancer, or if I’m in remission. I would probably have asked the same questions to someone else a year ago, but the fact is that I have not had any cancer in my body since March 28 (the day after my surgery). The surgeon removed the entire tumor (2.4 cm), plus a margin for error, and all the lymph nodes containing any cancer cells. Everything they have done to me since then is to prevent the cancer from coming back, a recurrence or a new tumor.

I’m taking a class right now in health and healing, that involves some magical-spiritual-meditation practice and some techniques from hypnotherapy and body work. Last week, people were talking about what is health and what is healing. Someone used the phrase, “Healing is growth,” and that made me laugh, because in my body right now, growth is the opposite of healing. In fact, the “healing” processes I’m undergoing are meant to prevent growth. I started thinking, not for the first time, about the oddness of cancer, compared to many types of what we perceive as “ill health,” where you feel bad, and when you start feeling better, you are getting healthier. Six months ago, I felt fine, but I was sick. Four months ago, I was more or less well, but felt terrible (or at least, to the extent I was sick, it was from the treatment, not the disease), and now I am well and feel well. And thank Whoever for that!

(Next week, hopefully I am doing a radio broadcast about breast cancer, for Breast Cancer Awareness Month. This week I have a piece about the Philippines; you can hear it tomorrow at 94.1 FM between 1:00 and 2:00 p.m. or online at www.kpfa.org/womensmagazine.)

And then there were none

2007-08-19T21:52:51Z

Just over a week ago, I had my last chemo. The one before that had been so terrible, that is the side effects from it had been, I felt worse than I had felt in months, that I seriously considered not going through with the last one. The thing that got me started thinking about that was that a woman in my support group mentioned that they didn't give her her last Taxol treatment because the neuropathy in her hands was so bad. And I thought, well, how bad does it have to be? Mine seems pretty bad to me, and they wouldn't know because they never ask.

The only things the doctors and nurses seemed interested in was my blood counts, which were not good. By the second-to-last treatment, my anemia was so severe that I could have had a transfusion, but instead I was given the wonder drug Aranesp (erythropoietin). As it happens, I just read a series of articles about erythropoietin in the New York Times because new studies have shown its side effects are more severe than company reps told doctors before it went on the market. The FDA is considering scaling back its approval for use in cancer patients, but lucky for me, they haven't done it yet. (The risks – blood clots, heart attacks and new tumors - don't affect me, but only people who take the drug long-term. All the controversy is resulting in a huge sales loss for manufacturer Amgen, which announced this week that it's cutting 14% of its workforce) But, in the intervening weeks between the treatments and the Aranesp shot, the resulting anemia got so bad that I felt like I was walking through pudding. I could wake up feeling sort of okay, go out, do two errands or go to a meeting, and suddenly be more exhausted than I ever believed possible. And the tiredness would bring with it more waves of nausea. I couldn't fight the anemia naturally, i.e., with high-iron foods like spinach and broccoli, because I had stomach aches all the time and could barely eat noodles. I couldn't take herbal iron supplements because they made me nauseous.

The other terrible thing has been the hot flashes and night sweats. Again, I can't really do anything about them, because everything there is to take for them, whether synthetic or natural, is estrogen or estrogen producing, and that would feed the tumor. Coffee, wine and spicy food –three of my favorite things in life – make hot flashes worse, but I actually have not been consuming any of those during the chemo, except coffee very occasionally because it counters some of the other side effects. So I am stuck with waking up all night, throwing the covers off, putting them back on, putting ice packs behind my head, and generally screaming at the world.

The weekend before my last treatment was scheduled, I sat down with my two best friends, who are both medical people, and we discussed the risk of ending early. Deeg had done a lot of research online, Medline searches, etc., and come up with probably 50 pages of studies, none of which were exactly on point, but which amply demonstrated that they have basically no idea how much treatment is enough. We did learn that there is still some controversy about the value of taxanes (the category of drugs that includes Taxol) in chemotherapy regimens. Many studies show that it improves the rate of non-recurrence of cancer (one by as much as 17%), but some showed that two standard Canadian regimens ((known as EC and CEF) which do not involve taxanes are more effective over 3 years and avoid the toxicity of the taxanes, especially the neuropathy.

In the end, what decided me to go ahead was that Deeg explained that the benefit of each treatment was not what I had been assuming. I figured it was like filling up a basketball: more is better until you get to the point where it's going to burst (i.e., the toxicity overwhelms the benefit), but each time you fill it, you increase the benefit. So I figured, Taxol adds 7% to the effectiveness of the AC (the first set of treatments I had), so by skipping one treatment, I would lose 1.5-2% of benefit. What Deeg explained is that having a half-filled ball is more like not having one at all (she called it a dose-response curve): they don't really know how much Taxol each person needs, but they do know what the maximum is that people can tolerate; if they could, they would give it all to you at once, but since they can't, they break it up into as few as possible – at this point, four every other week is the preference. So it's possible that I got all the benefit I was going to get after one dose, or possibly I wouldn't get any until the last one.

Of course, it is also possible that I got no benefit at all from any of this, either because I was going to be one of the 42% who was fine without any adjuvant therapy, or because I was one of the 26% for whom only tamoxifen (hormone therapy) was enough, or because I was one of the 19% for whom AC was as effective without the addition of Taxol, or because I am one of the 16% for whom none of it works (hopefully not). But this entire thing is a numbers game, because there's just no way to know what category you're going to be in, and so once you're in it, it makes sense to go all the way.

Maybe on some level I always knew that I would have the treatment, and pretending that I might not was just a mechanism for getting through it without having a nervous breakdown. Certainly, now that I've gotten through it, I think I would have been disappointed in myself if I had quit early, just to avoid being uncomfortable for another two weeks. In fact, the euphoria of knowing it was the last one made this one less awful than the previous one, though I definitely had some bad days.

I also had something else to focus on. Just around when I had my last injection of poison, we learned that my good friend Judith Mirkinson (Mirk), and two other members of GABRIELA Network, a U.S.-Philippines women's solidarity group (www.GabNet.org), were being prevented from leaving the Philippines. I had never heard of this particular form of harassment of international human rights activists. We are very used to people being denied entry, sometimes arrested and deported, and more rarely imprisoned and charged with crimes, but this was something different. The three women had attended the Women's International Solidarity Affair in the Philippines (WISAP), a biannual international gathering. (I arranged for a young Palestinian friend of mine to attend, who apparently had a fabulous experience and contributed a lot to the event, and I would have gone too if I had not been otherwise occupied.) Two years ago, after they led a delegation of women attorneys to investigate the human rights violations of the Philippine government led by Gloria Macagapal Arroyo, the three women had learned they and all the members of the delegation (including one who didn't end up going on the trip) had been placed on a watch list and wouldn't be allowed back into the country. Senator Barbara Boxer and others intervened and got that watch list withdrawn, and the three had no trouble getting in last month. But while they were in the country, a new law called the Human Security Act (their version of the PATRIOT Act) went into effect, and apparently brought with it a bunch of new watch lists, hold lists, and blacklists. Mirk reported that she saw the computer screen at the immigration counter, and across the top was a shocking pink bar that said "WATCH LIST HOLD LIST BLACKLIST SUSPECTED TIES TO TALIBAN" which is pretty absurd when you consider you are talking about a Jewish feminist.

The three, Analisa Enrile, Ninotchka Rosca (who is a Philippine citizen and U.S. permanent resident) and Mirk, were not imprisoned, they could go anywhere in the Philippines and do whatever they wanted, but were not allowed to leave the country. It's hard to know what the government imagined they were going to do, if they were stuck there indefinitely. Obviously, what they did was continue their activism, which they could do very effectively via phone and email, and they did. They mobilized support, with the help of Gab members who had made it home, like Mirk's two daughters, who did an amazing job of organizing a fax campaign to the U.S. embassy there and the consulates here, vigils at Philippine consulates around the country, and coverage in the progressive media. The embassy reported receiving hundreds of faxes from all over the U.S. and it worked – last Tuesday, the three were assured by the embassy that they had been removed from the watch lists. Of course, when they got to the airport, they were told the holds were still in place, but Philippine Congresswoman Liza Masa (of the GABRIELA Women's Party, one of the only all-women's political parties in the world) straightened it out and it now appears that the lists have been withdrawn for all 500+ people who were on them. So the campaign had a bigger impact than just getting our friends home.

I wasn't able to do too much, because I wasn't feeling so well, but I did do a little media work and will have a short report on the story and the San Francisco vigil on tomorrow's KPFA Women's Magazine (broadcast at 1:00 p.m. on the West Coast at 94.1 FM or available after that on our website, http://www.kpfa.org/womensmagazine/).

I was really happy that Mirk was able to join me and a dozen of my other closest friends for dinner last night to celebrate my slightly belated birthday and the end of this awful chemo process. I drank a glass of Sangria, my first alcohol in 4 months (I don't think it caused too many hot flashes) and ate a lot of great tapas with lots of health-promoting garlic (with only minor nausea resulting, well worth it!). I am not 100% over the side effects of the Taxol; my energy is still pretty low, and the neuropathy is still pretty bad (it may be for some months), and of course I still have NO HAIR. But I expect within a few weeks to be feeling close to normal. I have about a three-week break, I think, before I start radiation, and I plan to spend it making real headway on the rewrite of my novel, which is about half done now.

Thanks so much to everyone for your support during this difficult and educational experience. Whether you are one of those who came with me to chemo, came over when I was too sick to even laugh at your jokes, took walks, called to check in, made food, sent emails letting me know you were reading my blogs, or just sent good thoughts and energy, YOU MADE ALL THE DIFFERENCE! AND WE DID IT!

Why Me? Why Us?!

2007-07-07T20:28:28Z

Taxol is not the breeze I was promised, but fortunately I didn't really believe it would be. Nearly every side effect there is to have, I have. I'm still pretty nauseous, I have an itchy rash on my hands and feet and painful neuropathy in my fingers. After the first day or two, I have had only a little tingling in my toes, so at least I can walk, but my energy isn't so great that I can walk very far.

Still, everyone says I seem better, my acupuncturist says my pulses are much better, that I seem more like "me" and less like someone invaded. So I have to believe them, but I don't actually feel much better. I can say, yes, I had probably 50% more energy on Saturday and Sunday than I had two weeks ago, and maybe I am 50% less nauseous, but the 50% that is left is still a lot.

I can't help feeling like I'm failing. The nurse who was giving me my chemo on Thursday said, "You're not exactly the poster child for sailing through." I feel like I should be. I guess a part of me thinks that if I really wanted to be, I would, that maybe I just want an excuse not to do so much.

My friend Amanda joked the other day, "Well, if you hadn't screwed up by getting cancer, then you wouldn't be having to get all this treatment you're so bad at taking." She alludes to the tendency to seek individual causes for "why me" or "why her." I think every woman who gets breast cancer, and maybe every person who gets any kind of cancer, takes an inventory of her life to figure out what she did wrong. Shortly after my first chemo, I read a good article by Alice Lesch Kelly called "The Struggle to Move Beyond 'Why Me?'" in the New York Times. She says, "I was 41. I had no family history of breast cancer and no major risk factors. Tests showed I did not carry breast cancer genes. I exercised regularly and ate healthfully. I did not smoke. I had yearly mammograms. The only thing I'd done 'wrong,' according to the standard list of risk factors for breast cancer, was having my first baby after age 30."

We are aided in this need to blame ourselves by the medical/science industry, which generally over-emphasizes the role of individual risk factors like diet and body weight and underemphasizes environmental factors like toxics, plastics, cosmetics and radiation. A fact sheet from the Community Education and Outreach Program of the UNC-Chapel Hill Center for Environmental Health and Susceptibility illustrates this:

The first heading under "Environmental Risk Factors" is "Lifestyle Risk and Preventive Actions" and it says: "What we eat and drink and how active we are play a role in breast cancer. Research has shown that the following lifestyle choices increase a woman's risk for breast cancer:
- Consuming one or more glasses of alcohol a day
- A sedentary lifestyle
- Being overweight (especially after menopause)

By contrast, the following factors have been shown to be protective against breast cancer.
- A diet high in fruit and vegetables
- Regular exercise"

This is followed by the heading, "Exposure to Environmental Toxins" under which the text reads:
"Controversy exists about the role of environmental toxins and breast cancer. Scientists agree that exposure to high doses of radiation before 30 years of age, such as being treated for Hodgkin's disease, places women at increased risk for breast cancer. Possible, but controversial, environmental risks for breast cancer include:
- passive smoking (second-hand smoke).
- PAHs (polycyclic aromatic hydrocarbons) produced by the burning of coal, oil, gas, garbage or other organic substances.
- certain organochlorine compounds, such as the polychlorinated biphenyls (PCBs) formerly used in consumer and industrial electronics.
Research has shown that human exposure to electromagnetic fields and DDT/DDE, a now-banned but previously widely used pesticide, are not associated with increased risk for breast cancer."

Now this is interesting for a lot of reasons. One is that so much of the space under "Environmental Risk" is devoted to issues of diet and lifestyle, so it looks like they are telling you about the risks posed by our environment when they in fact are putting the onus back on you and your "choices." The second is that "being overweight" is represented as a "lifestyle choice," when in fact nearly all research, as chronicled in Gina Kolata's new book, Rethinking Thin, indicates that body size is mostly no more a choice than gender or eye color. That's why 95% of diets fail. That doesn't mean it's not good to eat healthy food and exercise, because obviously it is, but it means that you might do those things – which I do – and still be fat – which I am.

Even more important is the statement, "Controversy exists about the role of environmental toxins and breast cancer." That's true, of course, because any study that finds a connection between some industrial product and cancer is immediately attacked by whatever industry produces it, and they then fund their own studies to counter it. I know, because the law firms where I've worked for the last 18 years collect those studies, since a lot of their business is defending major polluters. But what they don't mention is that just as much controversy, or more, exists about the correlation of "lifestyle" factors, especially body size and diet. If you Google "breast cancer" AND "fat", you will get over 2 million hits, and among them will be an equal number of articles claiming to establish a link between eating fat and developing cancer and ones claiming that there is no relationship. Some studies have found that polyunsaturated fats increase your risk, and monounsaturated fats (like olive and canola oils) decrease it. According to the Breast Cancer Action website (www.bcaction.org), "There are plenty of reasons to avoid a high-fat diet, but breast cancer is not one of them. Studies have not shown that a high-fat diet increases breast cancer risk."

What seems to be true is that people emphasize the risk factors that they are already predisposed to believe in. One study that is rarely mentioned, as it is not in the UNC pamphlet, actually seems to be widely accepted by now, and it found that "Before menopause, obese women have a lower risk of developing breast cancer than do women of a healthy weight. However, after menopause, obese women have 1.5 times the risk of women of a healthy weight." (http://www.healthsystem.virginia.edu/uvahealth/news_breasthealth/0611bh.cfm) So apparently what you should do if you don't want to get breast cancer is be fat until menopause and then magically become thin, which is pretty much impossible.

Another study is also hardly ever mentioned in mainstream literature about risk factors is the 'U.S. Bra and Breast Cancer Study," done in 1996 by Sydney Ross Singer and Soma Grismaijer. This study found that:

- Women who wore their bras 24 hours per day had a 3 out of 4 chance of developing breast cancer
- Women who wore bras more than 12 hour per day but not to bed had a 1 out of 7 risk.
- Women who wore their bras less than 12 hours per day had a 1 out of 152 risk.
- Women who wore bras rarely or never had a 1 out of 168 chance of getting breast cancer. The overall difference between 24 hour wearing and not at all was a 125-fold difference.

Of course, the first thing that grabbed me about this was that some women wear their bras to bed! But then I started obsessing about the fact that I got breast cancer because I wear a bra more than 12 hours a day most of the time. Now some people, including my acupuncturist have suggested that it's underwire bras which really do it to you, so I quickly pulled the underwires out of all my bras (which honestly doesn't seem to make much difference in how they work).

Of course the number 1 risk factor for breast cancer is being over 55, so those who don't want to get the dreaded B.C. should – die?

In the AIDS movement we used to say, "Some of us have the HIV virus, but we are all living with AIDS." When we talk about breast cancer (and prostate cancer, lung cancer, and any of the other epidemic cancers among us), we need to stop asking, "Why me?" or "Why her?" and start asking, "Why us?"

Chemo Is Hell

2007-06-08T19:56:31Z

Friday, June 08, 2007

I have to say, chemo is so much worse than I anticipated. I don't know why, because it's not like I didn't hear that it was awful. The oncologist said it when I first met with him – "You're going to be pretty miserable," were his exact words. I guess maybe you just cannot believe it until you feel it.

So here's what it's like.

I go for treatment on Thursday morning. This phase (Adriamycin-Cytoxin or AC) takes about an hour and a half. The next phase will be Taxol and that takes much longer; the Taxol itself is a 3-hour drip and there are things that happen first, so it might be closer to four. When I get home from the treatment, I feel kind of weird and woozy but okay; I generally can eat a reasonable lunch and a small dinner with a friend.

When I get up on Friday morning, I want coffee, the last time that will happen for some days. I drink the coffee, eat some fruit and yogurt, go for a walk, and don't usually feel the need to nap until late afternoon. If it's a Women in Black Friday, I can go and stand there for an hour and get home okay.

Friday evening is like waiting for a train wreck you saw in a dream. I think I can feel the poison working its way into all my systems. By that time, the steroid they gave me in the office has pretty much worn off. I'm uninterested in eating and starting to feel queasy, despite the best anti-nausea meds they've given me. I lie around and try to convince myself I am not going to be as sick as I was the last time.

Saturday and Sunday I'm a zombie. I sleep about two-thirds of the time, and the rest is filled with being bad company to the friends who come over, taking short walks, fighting the waves of nausea and trying to eat and drink small amounts. I can't handle talking on the phone. My eyes won't focus well enough to read, though sometimes I can do part of a crossword puzzle, so I just sort of drift through movies or whatever is on TV. I wake up several times a night and fight against throwing up. The times I lost, I felt better after, but that doesn't seem to be something you can remember in the moment. This last round, I managed not to throw once, which feels like a victory.

Monday is absolutely the worst day, because I am almost better but not really. I have to go get a shot, and I like to walk over there, which is about ¾ of a mile or so. Someone usually walks with me, we wait a few minutes in the doctor's office, the shot takes no time and then we walk back. This past week, we stopped for lunch at a café a few blocks from my house, but about 15 minutes after we sat down, I was nodding off against the window. I got home and pretty much fell down on the couch, slept for most of an hour, got up, went to acupuncture, fell asleep with the needles in me, woke up feeling a little better, got home, slept.

By Tuesday, I think I should be able to do things, and I can, but I cannot do as much as I think I can. Those are the days I get so frustrated, because I'll be feeling okay, and then suddenly I feel awful. My energy just plunges, like someone siphoned all the gas out of your car right after you filled it up. Once I was standing in line at the grocery store, and I broke out in a cold sweat because I suddenly felt I couldn't stand up one more second. This time, I went to a meeting and then a demonstration, in San Francisco, and there was a cold wind which made it feel like I was trying to move through sand. I suddenly felt like I had to have protein, so a friend and I went for Vietnamese food, which helped. But then I got into the BART station and the readout said there wouldn't be an East Bay train for ten minutes, and I nearly burst into tears. I COULD NOT wait that long. As it turned out, there was one in five minutes, I made it home, and it was okay.

Then starts the period of waking up in the middle of the night and not being able to go back to sleep. I'm not sure what causes that, the drugs themselves, or the nausea meds or the effect of having slept so much of the previous five or six days, but it is totally irritating. While I'm awake at night, I am fighting nausea, and all the anxiety over things I think I should be doing, that I don't feel up to doing yet, crashes in. Then of course, I get up in the morning not feeling rested, and that means I won't be able to make the most of these days when my energy is pretty good. I do have wild dreams that I remember more than I usually remember my dreams.

On Thursday, when I told the nurse I had been nauseous for two weeks, she said very few women are nauseous in the second week. Well, I really envy those who aren't. I am nauseous all the time and by the end of the first week, I have nothing very good to take, plus I am just sick of having so many different drugs in my system, wreaking havoc with my plumbing and making me feel like I'm in a fog, and so I decide I will not even take what I have, and I just walk around feeling disgusting. I get hungry, but nothing seems at all appealing so I don't eat until my body just demands something.

My acupuncturist encourages me not to worry right now about a "good diet" but just eat whatever I can handle. I seem to crave fruit and I can eat it with yogurt, which Susun Weed claims cures nausea – it doesn't seem to do it for me, but I like it and it is good for protein and nutrients. Other than that, I use bread and rice cakes to break through the worst nausea, and sometimes I seem to crave tofu, which I'm supposed to be avoiding because of the phytoestrogens, which might or might not feed the estrogen-sensitive cancer, but I'm not worrying about that right now because I don't eat that much of it and it doesn't seem likely that cancer can be growing in me now when nothing else is.

One of my friends has a coworker who recently finished chemo, and she told my friend the other day that it was so awful she started to hallucinate. It helped me so much to hear that! Because so many people have told me "it's not that bad," or tried to inspire me with stories of friends of theirs who worked every day, which has the opposite effect of what they intend, making me feel that I'm just not tough enough.

While nauseated and not being able to sleep last night, I flashed on what it would be like if I were dealing with this in prison - that based on having said to my niece that I would give anything to be back in immigration prison right now. But of course, I did not mean with cancer (and I didn't really mean it anyway). Anyway, just the thought gave me chills; I cannot get it out of my head. I concluded I would want to die. I am so miserable, and yet I am so privileged. I just can't imagine it in the circumstances at least 90% of people getting chemo are in.

Sick of it

2007-05-31T08:51:33Z

I am so sick of this cancer thing. I'm tired of feeling lousy, tired of thinking about it, talking about it. I just want it out of my life. And then I think, how can you say that? There are all these people who have had three, four metastases, a friend's mother just had her third round of chemo.

It reminds me of how I felt about the occupation after eight months or so in Palestine - sick to death of it, and also knowing I hadn't been through anything.

I'm exhausted, need to go to bed because I have chemo in the morning, not wanting to go to bed because I have chemo in the morning. I just can't bear that I didn't even have two good days and now it is starting again.

Rrrrrrr.

Letter to Cindy Sheehan

2007-05-29T19:31:16Z

Dear Cindy,

My first reaction to your "resignation" letter was anger. I felt like, this woman's been an antiwar activist for two years and she's hanging it up publicly, sending a message that protest is worthless and we should focus on humanitarian work? That is a bigger disservice than if she had never gotten involved.

Then I made myself step back and remember what you have been through. You lost your son in a horrible way. You gave up your life as you had known it and dedicated yourself 24/7 to making his death meaningful. You exhausted yourself, sacrificed your marriage, your health, maybe your relationships with your other kids, and now you are confronting what many of us have known all along - that the public mostly does not want to know what we know, and that our public officials, those who were legitimately elected and those who were not, don't care what we think. That the will of one or a few or even a lot of people cannot change U.S. foreign policy, no matter how hard we try. Because of your extraordinary circumstances, you were given a responsibility and a leadership position that you weren't necessarily prepared for, and weren't supported in. Many of those who had been the face of the movement for several years, or more, were happy to step aside and let you take the heat and do the running for a while. And yes, I am sure that many in the movement resented your janie-come-lately leadership and what they may have perceived as your egotism, as well as the superior moral authority given to you by the media and the public over those of us who have always been dismissed as knee-jerk leftists and worse.

You worked harder than I ever have in my life, and you were mercilessly attacked by people from many sides. You brought many thousands to the movement who would not have come by themselves. For that, the country owes you an enormous debt.

My anger turned to sadness and compassion.

Rest, Cindy. You deserve and need it. My heart goes out to you and your family, and I hope that you find a way to heal yourselves and all your relationships.

But I hope when you have rested, you will understand some things, and even more, I hope those who were inspired by you will understand them.

I've been a peace and justice activist for about 30 years now. I've made this activism my life. I have spent a total of three or four months in jail, which is nothing compared to many other activists, some of it in Israel. Very few people know my name, and that's a good thing, but of what's been written about me, plenty of it has been very nasty. And even knowing that the people who write nasty things about me are not people I would want for friends doesn't make it easier to see.

I battle the depression that you are expressing every day. Nearly every day, I want to say, forget you, forget all this, no one cares, no one wants to know, why am I beating my head against the wall? I could be going out to movies instead of going out to meetings, working on my novel instead of another flier or article that hardly anyone is going to read.

But then I remind myself that Rosa Parks and the others who kicked off the civil rights movement started meeting in 1947 to try to break Jim Crow. The Montgomery Bus Boycott didn't happen until 1954, and the Civil Rights Act wasn't passed until 1964. If they had given up after two or three or even five years, we would never have heard of them and maybe people in the South would be riding segregated buses today.

In this country, even within the left (and by the way, the Democratic party is not the "left"), we tend to learn the history of social movements in a "greatest hits" way, from movies or books that emphasize the major dramatic confrontations and flashpoints. We seldom hear about the campaigns that didn't work, the times when the civil rights movement came into a town and had demonstration after demonstration and wasn't able to provoke a reaction from local law enforcement that would get them attention from the national media. We hear about the union organizing drives that worked, not the ones where the organizers slipped quietly away after the company paid off the workers to vote against the union. We think we should be able to expect nearly instant results from our work.

Remember that the first large scale deployment of U.S. troops to Vietnam was in 1961, and it took 12 years to get them out.

You say that if you return to activism after you rest, it will be to do "humanitarian work." Well I'm sure that will feel good, but if you do humanitarian work for Iraqis without fighting to end U.S. intervention in their country, you will be giving with one hand while taking with another. Because NO amount of humanitarian aid we could possibly give the Iraqi people could begin to offset what we are doing to hurt them. To allow the pentagon to spend another $100 billion on tanks and guns and bombs and prisons and contracts to the companies who are plundering what's left of their resources, and then say, oh, here's a bag of flour, here are a few boxes of medicine, is insulting. The Iraqis don't want aid. They want their country back, then they want an apology for what we've taken from them, which is everything, then they want reparations so they can rebuild it themselves.

I hope when you have rested, you will see things differently. To see that the movement did not die when you left it. To look around and see that in fact, you were never the face of the peace movement. You were one face among millions. Many who were there before you, many whom you brought in, many who came despite you and yes, many who never even heard of you.

I hope you will learn what I have learned over all these years of activism - that you are not in it alone. I have given my life to the movement, and the movement has given me a wonderful life. Today, as I battle cancer, the people who are coming over the bring me food and keep me company are all people I have spent so many hours with in meetings and marches and dialogue and disappointment, being upset that we didn't get the recognition we deserved, being upset that we didn't accomplish our goals, being upset that the more we do to make things better, the worse they seem to get. They're also the people with whom I've celebrated birthdays and births and holidays and homecomings. They're the people who are going to party with me when I am cancer free in ten years.

And as your neighbors here in California, we'll be glad to party with you when you realize that you can be part of the movement again, without having to be the movement.

In solidarity and appreciation for all you've done,

Kate

Hair

2007-05-25T04:27:54Z

Right on cue, my hair started falling out the day of my second chemo treatment. I had decided not to shave my head, though it would definitely have made it easier, because I wanted to see what it was like to lose something I had always taken for granted.

It was interesting, and it was also messy and physically painful, which they don't tell you, and emotionally traumatic.

The first couple days, I felt like my hair was some kind of installation sitting on my head; if I didn't mess with it, it would be okay, but any time I touched a hair, it came out. So I put a scarf over it to try to "keep it on." The scarf also helped dull the sometimes burning, sometimes bruised feeling in my scalp. When I would take off the scarf, or it would slip off during sleep, there would be gray and dark coils everywhere my head had touched.

By Monday, the wastebasket in the bathroom was full of what looked like an odd sort of hedgehog, but because my hair is so thick, I still had more or less a full head of hair. When I would take off the scarf, there would be a Brillo-like wedge sitting on top waiting to be plucked off. I brushed my hair out gingerly, but was still afraid to wash it. That night, I told a friend, "Now I am at the combover stage." She said she would call me The Donald.

Yesterday, finally, my scalp was itching too much, so I gave up and decided to see if I could make it all come out. I stood in front of the bathroom mirror and yanked out handful after handful, then washed my head/hair and pulled out more when it was wet. By the end of the day, I looked like Ben Franklin, with a ring of hair at the bottom of a bald head. Actually, I didn't look like Ben because my head turns out to be a perfect egg shape, no news to friends who already suspected I was an egghead.

Last night I slept without a scarf for the first time since Thursday. When I woke up I looked in the mirror and almost screamed.

"Who is that ancient woman?" I wondered.

I no longer look like an eggheaded Ben Franklin. Now I look like Scrooge or Bob Cratchett, whichever one looked like a skeleton with a couple tufts of white hair coming out of his skull. Honestly, I always knew my hair was important to me, despite the fact that I never heeded my mom's implorations to "do something with it." But I never quite realized how important hair is to how we perceive ourselves and each other. With my hair, which was really mostly gray by now, I think I looked just about my age, maybe a few years younger. Without it, I look 100 years old. Every wrinkle and line in my face jumps out.

Plus my scalp itself, which still hurts, is kind of pasty white. How do all those cool young women who shave their heads for fashion pull it off? And what am I supposed to do now? Rub it with olive oil? Dust it with corn starch, like you do with babies to keep their tender skin from getting irritated? And the most important question of all, when you're bald, do you wash your scalp with shampoo, because of all the nutrients and soothing herbs that they put in shampoos, or do you wash it with soap like the rest of your skin? Advice from the experienced welcome.

(Incidentally, for those of you who are wanting to know about more pragmatic things, the treatment went fine, Thursday and Friday were not too bad, Saturday and Sunday were bad, Monday was pretty bad, since Tuesday I've been less nauseous but still really tired. Had acupuncture today, which I think helped, and am hoping to be feeling good by Sunday.)

Oh, there's a good photo of me pre-baldness, with an article about a campaign to get the San Francisco LGBT Film Festival to stop taking Israeli government money, at http://www.ebar.com/news/article.php?sec=news&article=1838.

Close Encounters of the Paranoid Kind with Susun Weed

2007-05-17T05:28:04Z

(this is the eve of my second chemo, so I'm getting in as much writing and otherwise mind stretching stuff as I can before I go into a five-day vegetative state.)

Until a few months ago, I hadn't been in a doctor's office for five years. In my adult life, prior to this episode, I think I got three prescriptions. This apparently is a rarity; doctors and nurses alike stared at me in wonder as I answered no, no, no, no, no, to all the standard questions – not on any medication, never had surgery before, no current medical conditions, never had any broken bones, never hospitalized before.

None of this is any credit to me, just luck and good genes (thanks, Mom). But possibly because I could, I've also developed a healthy suspicion of doctors and pharmaceuticals and tried to protect my health with organic foods, moderate exercise, fairly clean living and positive vibes. Oh and fun, meaningful political activism, which I'm convinced is someday going to find its way into the Materia Medica as a powerful tonic.

Now, of course, all of that has changed. That is, I'm still eating organics and staying physically and politically active, but that's supplemented by a plethora of little plastic bottles.

In the oncologist's office, they give me Adriamycin and Cytoxin, both of which are listed as carcinogens on the National Toxicology Program. They also give me Ativan to relax and a strong antinausea drug. The Adriamycin is bright red, which is kind of unfortunate for the psychological impact. When I go home, I can take a generic form of Zofran for nausea, which works pretty well, but I only get three days' worth because apparently it costs the insurance company $80 a pill. When that's done I can take Compazine, which doesn't work so well and has some unpleasant side effects, so I mostly do without it (not hard, since it doesn't work), but I do take Protonix for acid reflux. I can also take more Ativan, if I want, though so far I haven't. I also have an antibiotic that I'm instructed to start taking if I develop a fever over the weekend.

The Monday after my Thursday treatment, I go back to the doctor's office to get a shot of Nulasta, which stimulates production of the bone marrow that the chemo drugs are busy killing off. That in turn gives me some powerful aching in my back and neck, so I am advised to take Advil, which however sometimes aggravates the stomach upset, so sometimes I take Immodium for those symptoms. Sitting idle right now is the Percocet they gave me for pain after the surgeries, which I didn't like and didn't take much of so I have plenty left, next to the Extra Strength Tylenol which I liked better for pain. In addition to all this, it turns out that I have unrelated hypothyroid, which is mild but worsening, so I will probably need to take Syntheroid for the rest of my life.

Then there are the three bottles of herbal formulas I got from my acupuncturist to help me tolerate the chemo, big unpleasant-tasting pills that can make me nauseous on their own, and the little bottle of Rescue Remedy she recommends for anxiety (I have never found it very effective, but it used to work wonders on my crazy cat).

Suddenly there's no room for everything in my medicine closet, which used to hold things like henna and a hair dryer, but then I might as well stash those away since I'm about to have no hair, an event which has looms unnecessarily ominous as I anticipate it. The nurse told me I'd be bald in three weeks, but the radiation oncologist gave it a slightly longer timeline, and I haven't lost a hair yet, though occasional scalp tinglings in the morning throw me into panic.

BC (Before Chemo), before I knew for sure I would be encouraged to have chemo, I told people that if anyone told me to get chemo, I would keep looking until I found someone who told me not to. By the time I woke up in the recovery room, the surgeon had already told my friends that I had seven positive lymph nodes (the 7 Deadly Nodes, I call them) out of a total of 21 removed from my breast and axilla, and therefore would need to have chemo. She reiterated this to me in my dopey state. When I was feeling better enough to use the computer, I started the process of finding that elusive countervailing opinion. I read article after article on www.breastcancer.org and www.anniappleseedproject.org, both great resources with information on both western and alternative/complementary therapies. I called the Women's Cancer Resource Center and talked to two different naturopaths who specialize in treating women with cancer. My two closest friends, who are both health professionals, did lots of research of their own. One talked to a friend of hers who grew up in Romania, where they were more appreciative of alternative approaches, and also asked a naturopath she goes to. Everyone and everything confirmed what the doctors told us, that chemo greatly increases the survival rate for women with my stage of breast cancer.

When my friend and I went to the oncologist, he punched in my basic demographic information into a database and printed out some brightly colored graphs representing this information, or maybe I should say opinion: Out of 100 women in my situation, who have either lumpectomy and radiation or the equivalent mastectomy, with no further ("adjuvant") treatment, 65 will be alive in ten years. Of the remaining 35, 2 will die of other causes, and 33 will die of the cancer. Of those 33, 9 will live if they only take tamoxifen (hormone therapy), 16 will live if they take only chemo, and 21 will live if they do both.

These numbers were good enough for my friend, but I was still not sure. After all, I said, it just doesn't seem like a good idea to flood my body with toxic chemicals, cancer-causing chemicals in fact, to rid my body of cancer cells that are two-thirds as likely not to be there as to be there.

"You're right," he said. "It doesn't make any sense at all. If you think you're going to be in that two-thirds, don't do it, because it's awful."

But, he said, he wanted to show me something else. He pulled up another screen and punched in my numbers again, and ran out another set of graphs. This one showed the risk of relapse. In this scenario, 56 of the 100 would have cancer in ten years, with no adjuvant therapy. With either hormonal or chemotherapy, 26 or 27 of the 56 would be alive without relapse, and with combined therapy, 42 would be alive without relapse.

That did it for me. I asked myself, assuming I'm not one of the unlucky 14% who do everything and relapse anyway, do I want to be dealing with cancer for the next ten years, or do I want to have a bad six months and then go on with my life? It wasn't a contest. I went into my first chemo appointment with the confidence that I'd made the right decision.

Last week, while I was still feeling pretty lousy, I got a package from an out of town friend. One of the things in it was Susun Weed's Breast Health book. Susun Weed (I don't know if that's the name she was born with; if so, it's awfully convenient) is a pretty famous herbal healer. I know people who have studied with her, including the friend who sent me the book, and they say she's really smart and knowledgeable and down to earth. I eagerly started flipping through the book. It's organized chronologically, prevention, diagnosis, surgery, hormone therapy, radiation, chemotherapy. I looked at the exhaustive list of cancer-fighting foods in the prevention section, and was really pleased to see that everything I love to eat: garlic, onions, olive oil, broccoli, sweet potatoes, potatoes, are recommended for fighting cancer, and that fasting, which I hate, is not. The best news of all was that "Of 1,271 elderly Americans, those who ate the most strawberries were least likely to develop cancer." I thought smugly of the two baskets of organic UFW strawberries sitting in my fridge and turned to the section called "Choosing Chemotherapy?"

It starts with a fable called "The Poisoned Apple," and that in itself was enough to send me to my room crying. When I calmed down, I went back and picked up the book again. On the first page of the chapter, Weed cites a study by naturopaths Steve Austin and Cathy Hitchcock which purportedly found that only 25% of those who would have died without chemotherapy get any benefit from it – very different from the statistics I quoted above, that I was shown by my doctor. Weed goes on to cite several other concurring studies, including one from the US General Accounting Office in 1989 which, she says, "found no increase in longevity in premenopausal women who chose chemotherapy – as opposed to those who did not – for treatment of Stage II (or earlier) breast cancer." (My cancer is considered late Stage II or early Stage III.) She then quotes a doctor at the University of California San Francisco medical school, "Most cancer patients in this country die of chemotherapy….The fact has been documented for over a decade [that] women with breast cancer are likely to die faster with chemotherapy than without it."

Sitting here now, I cannot describe the wave of panic and fear that swept through me. I had known it. I had begged for someone to tell me this, and no one had. I felt let down and lied to by everyone I had trusted, most of all myself. I was sure I'm going to die, and it will be my own fault because I ignored what I know to be true, I broke faith. I let myself get sucked in by the medical establishment, when I should have known better. In retrospect, I think I must have felt like a Christian Science follower who let herself be given penicillin.

In between bouts of shaking and crying, I read through the chapter and pored over what she says you can do to strengthen and protect yourself against the poisons. I dropped in on a Break The Siege meeting (our local Palestine solidarity group, which I've been sitting out for a few months while they've been in a planning process) and then ran off to Rainbow Grocery to stock up on the herbs, roots and tinctures which were going to be my magic potions against the evil spirits.

Don't get me wrong. With one exception, every herbal formula I bought is something I would normally want to have in my house, like Echinacea and St. Joan's Wort. Can't go wrong with Peppermint or Ginger. But in the moment, it was like I HAD to have them NOW or some terrible fate was going to befall me. I had to have nettles, to keep my hair from falling out or make it grow back fast. The second I got home I started cooking up an infusion of nettles. I mixed all the different tinctures in water and gulped them down one after another (after checking the book to make sure it was okay to mix them). Then I started frantically cooking carrots with ginger and garlic and cauliflower in olive oil (according to the book, women of Crete get 40-60% of their calories from olive oil, and are the least likely in the world to die of breast cancer). I almost ran out to Safeway at 11:30 p.m. when I thought I was out of olive oil, but I managed to eke out just enough.

By the time my food was ready, I was slightly nauseous from mixing so many herbs, on an empty stomach, so I nibbled some nuts and dried apricots and went online to see what I could find out about the facts that had so shaken me up.

What I concluded, after a couple hours' research, is that I had, in fact, known what I was doing all along. I had known that a majority of women survive breast cancer with or without chemo and tamoxifen. The doctor himself told me that – 65%, nearly two-thirds. I knew I could decide only to do the tamoxifen, which while causing uterine cancer and having some other bad side effects (my naturopath tells me that the manufacturers of tamoxifen also manufacture a lot of the pesticides that cause cancer), is not nearly as harsh on your body as the chemo drugs. I knew if I did that, I would have a 70% chance of being alive without cancer in 10 years. And I decided that 84% was better than 70% (which is, I suppose, a mathematical fact).

Now I think that Susun Weed, for all her brilliance and good intentions, is irresponsible. Her book was written in 1996; the Austin & Hitchcock research she quotes was published in 1994, so was probably conducted earlier than that, and at that time, it was probably accurate. Chemotherapy was being recommended to a much wider group of breast cancer patients at that time, nearly all women with Stage II cancer, in fact. But her website, which is presumably current, doesn't say that. Neither do any of the other sites that recommend either her book or the Austin/Hitchcock book.

I also think, based on what I was able to find out about the studies themselves, that she slightly misstates their findings to support what she believes. To be fair, she doesn't say women shouldn't have chemo. She says to do research and consider the risks carefully, both of which I did. She also says at least one thing which I know was not true when she wrote it, which is that chemotherapy "is rarely suggested for postmenopausal women." My mom was diagnosed in 1991, and she had chemo, as did my friend's mom a few years later, and another friend's mom last year.

I believe that it is possible to heal cancer naturally, and it might well work better and be healthier long-term than chemotherapy. I know people who say they healed themselves by drinking massive amounts of wheatgrass juice. I also know of people who say they healed themselves with positive thinking. A coworker, on hearing of my diagnosis, tried to sell me on the new psychobabble craze called The Secret (Oprah is apparently into it). Using The Secret, people claim to have cured their cancers by refusing to give into them or acknowledge them in any way. I believe some of them did. Of course, remember that many people with cancer will be fine without much treatment. Going back to the numbers I was given at the beginning, 42% alive without relapse is not bad. I just think 84% is better.

I'm convinced that given the information I have available, I made the right choice for me. I'm not willing to spend hours every week brewing and drinking nasty-tasting herbal concoctions. That's not to make fun of anyone who does; I really admire them. I just know it's not for me. I don't have the strength of will right now to try to vanquish my cancer by meditation and visualization. I don't want curing my cancer to be a full-time or even part-time job for the next ten years. I want to give it six months of my life and then hopefully be able to stop thinking about it. It may well be that in five or ten years, there will be new information that will suggest that chemo isn't recommended for women with my stage of breast cancer. But that will be then and this is now. And right now, as a friend taught me to say, I'm doing the best I can.

(Incidentally, I'm still keeping the Weed book handy for info about managing the side effects.)

I dreamed I went to Gaza in my secret armor bra ...

2007-05-15T20:55:19Z

QUIT! had a great time on Saturday with our Mother's Day extravaganza at Victoria's Secret. I worked hard on the stanchions (a stanchion, in case you don't know, is one of those things movie theaters use to keep the crowds in line), which looked great but didn't actually stand up in the wind. We made it work, as usual. Laurie really outdid herself with the lingerie; between that and the brochure I designed, we are sure Victoria's Secret's going to try to hire us.

Read all about it at http://www.indybay.org/newsitems/2007/05/15/18416564.php.

What's So Special About Me?

2007-05-14T00:44:14Z

(My first cancer blog. But don't worry, you're not about to be subjected to online vomiting.)

I wasn't going to write about having cancer.

I don't know why not. It's not like I don't know that cancer, and every other thing having to do with the medical establishment and the health care industry, is also a political issue, or that the personal is political. I just felt somehow that writing about it would be too much like whining. It's one little thing happening to one little person, one very lucky and privileged person at that, and anyway, lots of great words about cancer have been written by lots of great writers, so unless you're Gina Kolata or Audre Lorde, shut up.

But finally I've caved into the fact that I'm a writer, and that's what writers do, we write about what's going on in our world, and right now, cancer is one of the things going on in mine. I'm not doing too well with the "big writing" just now so I might as well write about that little thing called cancer that is happening to me.

Not because I'm so special, just because.

That's a mantra I'm trying to practice. A lot of the learning that this cancer thing has to give has to do with acceptance. Accepting the diagnosis, of course, accepting that there are things we can't control, accepting the decisions that have to be made and the ones I have made.
Accepting people's help and caring is probably the hardest for me. So many people have come forward, friends and comrades, offering to do things, and it's a challenge to let them. On one hand, having the support feels wonderful. The food people made is incredible, the subscriptions to Netflix and the New York Times fabulously distracting (well, the NYT's Middle East coverage sometimes makes me feel sicker, but the crossword puzzle is comforting). Rides to and from surgery and chemotherapy are essential, as is having someone with me when I talk to the oncologist, so they can confirm that yes, he really did say I'll either have 4 Taxol treatments two weeks apart or 12 every week. One friend made a whole website (using the free tools at http://www.lotsahelpinghands.com/) so people can sign up for times to come over and hang out with me while I'm not feeling well.

Then I stop and think, well, why should I get all this help? After all, lots of people in our community have medical issues. Several of my close friends have chronic illnesses, some life threatening and some not, and all of them are frequently in more discomfort than I am now. None of them have websites coordinating support. The only difference between me and them is that my illness is hopefully going to go away, I'm going to be back in my normal state of blissfully ignoring my body. So why am I so special?

I feel like I don't "deserve" all this attention. Then I think, okay, well, I've occasionally volunteered to take food to friends who just had babies, gone to fellow activists' baby showers, visited people in the hospital, stayed over with a friend who had had a hysterectomy. So maybe
I "deserve" a little bit of help now.

Then I think about the times I have helped out and the times I haven't, and ask myself, did the people I visited in the hospital deserve it more than those I didn't? Were the new moms for whom I cooked needier than those for whom I didn't? No. Those judgments never entered my head. I did it when I could and not when I couldn't. There were times when I just called or sent a card, there were times when I didn't even get it together to do that. Sometimes that had to do with my own shyness, wondering if I would be bothering someone I didn't know that well, and sometimes it was just stress and laziness, but it never had to do with how worthy I felt the person was.

A friend of mine recently broke her ankle, and she was very reluctant to let us do anything for her. Whenever we would offer to bring over food, walk her dog or clean the house, she would say, "No, I feel like I should save it for when I really need it." We kept trying to tell her that there wasn't a limited supply of good will. She could have help now and if she needed it later, there would be more where that came from. Now I hear myself saying the same thing.

"I can go to the grocery store for myself," I told a friend.

"I know," she answered, "but do you really want to? Is that how you want to spend your energy when you're easily fatigued?"

Support from friends and colleagues isn't about cashing in earned credits. That's the State Disability Insurance I'm getting, because I've paid into it for the last two years, and because I am fortunate enough to live in California, and the company Supplemental Disability salary continuation I'm even luckier to have because of my good job.

The support of my community is a gift. And when someone gives you a gift, it's not because you deserve it, it's because they care about you. If your friend gives you a book for your birthday, you don't say, "Oh, you shouldn't have done that, I can afford to buy books and Marcy across the street can't, so you should give your presents to her." You just say thank you.
I'm also recognizing that there's an arrogance in feeling that I should always be the one helping, and never the one needing help. Our society increasingly divides people into helpers, helped, and helpless.

The other day, I had an episode of panic I'll write about later. It propelled me to do something I had been meaning to do: call the Women's Cancer Resource Center for support group referrals. In the course of playing phone tag with the very sweet hotline volunteer, I learned that they are currently short of volunteers, because many of them are pre-med students who are now having exams and getting ready to leave for the summer.

"Maybe I could volunteer while I'm not working," I immediately suggested.

In fact, it would be a good match because the work sounds very similar to staffing the ACCESS Women's Health Information Hotline, which I did for several years. However, the volunteer said they don't like people to volunteer while they're in treatment, because it can be kind of overwhelming.

I was disappointed, even though I don't actually need more projects. I realized that I would feel better accepting help if I were also giving it. There's something humiliating about simply letting myself be needy. Then I reflect, does that mean that the women I gave information and referrals on the ACCESS hotline should feel humiliated? The many women I counseled during my years volunteering with San Francisco Women Against Rape?

No, of course not, I answer myself.

"Well, are you sure?" my alter ego challenges. "What's the difference between them and you? Why are you so special?"

Queer Institutions Have Stolen the Queer Community

2007-05-02T20:05:42Z

May 1, 2007

Last night a friend and I went to a program about the embattled queer movement in Serbia. It was really interesting, and disturbing. It was held at the LGBTQ Center, a big, beautiful, five-year-old property on the edge of the Castro. My friend and I both commented that we had only been inside the building twice before; once for a meeting with officials of the "Pride" Committee, after we were kicked out of last year's LGBT Pride festival for trying to hand out leaflets shaped like sleep masks, and once for a community event. I had been outside the Center a few other times, most recently a few months ago to leaflet people going to a reading sponsored by the Israeli Consulate.

On our way out after the program, we decided it would be good to leave some fliers about some of our current campaigns on the literature racks. We went to see where we could do that, and encountered big signs announcing that any literature not approved by the front desk would be removed. We went to the front desk and I told the young man there, presumably a volunteer, what we wanted. I handed him one of our fliers, asking people to pressure Frameline, presenter of the San Francisco LGBT film festival, to stop taking sponsorship from the Israeli Consulate until Israel stops violating international law.

The young man looked at the flier and shook his head.

"It's political," he said. "We can't put up anything political, unless it's about gay marriage."

His face was deadpan, but I thought he was kidding. He wasn't.

"We can't have anything about protest, nothing against the Bush administration," he said.

"You're not serious!" I burst out, and he mumbled "Our nonprofit status."

"It's not electoral," I said. "It's just asking people to pressure our queer institutions …"

"Where is this policy written?" my friend asked.

"I don't know," he said. "But it's what I was told. Nothing about protest, nothing political, unless it's supporting gay marriage, because that's something that presumably the queer community all agrees on."

Well that's actually a big presumption, since we are queers who are not in favor of marriage in any form. But we didn't bring that up.

When I kept arguing, he said, "Well, we'll try it," and took a few of the fliers. I am quite sure they will never see the light of day.

Now this is patently absurd. First, no community center's nonprofit status is threatened by allowing free exchange of ideas, political or otherwise, within its premises. The Women's Building has been a community institution for over 25 years, and you can put anything you want on their shelves, to be ignored by everyone who comes there for Rhythm & Motion, AA meetings, poetry readings or whatever. When I went to the Embarcadero YMCA, there was a bulletin board where you could post pretty much anything. The Center is not being asked to put its name on the flier. In fact, by having a policy that literature has to be approved by them, they slightly increase their liability for its content; if they would just allow free for all, there would be absolutely no problem.

But if there were any validity to their concern about their nonprofit status, then why the gay marriage exception? Because lobbying for gay marriage is still lobbying. So it seems like the intent is more to avoid "controversy" than to shun everything political.

Finally, as I previously mentioned, they have hosted events sponsored by the Israeli consulate. They presented an event with Irshad Manji, a spokesperson for anti-Arab and anti-Islamic forces that many queers find highly offensive. These are just a couple things I happen to know about, but doubtless, they have also hosted any number of both left- and right-wing events, and many in between. And though I wish they would NOT cosponsor programs with the Israeli consulate, and was there urging others to tell them the same, in general I think it is good for the LGBTQ Center to provide space for the range of opinions and interests within our communities.

I spend a lot of time being depressed these days. There's a lot to be depressed about: The war in Iraq, the fact that there seems to be no way to end it, the fact that the enormous death toll has become so normal that even those of us opposed to it don't really think about it, the fact that immigrant children are being kept in prison, wearing little prison clothes and being threatened with isolation if they "misbehave." The ongoing disgrace of Guantanamo, Abu Ghraib, and the new humongous detention facilities in Iraq which are presumably being filled with the victims of all those house-to-house searches that were the basis of the "troop surge", and the fact that we haven't heard a word about them in months. The fact that in the endless media discussion of the various bad proposals for "health care reform" in California, it is NEVER mentioned that a single-payer universal health care bill passed both houses of the legislature more than a year ago, and was vetoed by the governator, who is now promoting a plan that will force low-wage workers without employer-provided health benefits to pay insurance companies for policies that won't actually cover their health needs.

Then on the personal front, there's the fact that I have breast cancer and am about to flood my body with carcinogens to hopefully prevent a recurrence that might not happen anyway. Add to that the fact that my insurance is for some reason rejecting my lab bills, and I'm getting incomprehensible bills from the anesthesiologists.

Compared to all these issues, the fact that we can't put out our fliers at the LGBTQ Center might seem pretty trivial. After all, it's unlikely that anyone who goes to the Center would even be interested in helping us get the Israeli government out of our film festival. But in fact, none of the other issues hit me as hard as this one, because it signals that an identity that is core to who I am, that informs all the other political work I've done for the last 25 years, has been stolen. Yes, stolen.

We cannot afford to be silent about this. We cannot afford to just shrug, like Gay Shame and other alienated queer groups do, and say, well of course, the Center is just bourgeois, it doesn't represent us, gay people are sell-out, forget them.

In the late 1980s, when ACT UP, Queer Nation, Stop AIDS Now Or Else, Men of All Colors Together, Let It All Hang Out, Lesbian Avengers and other grassroots queer groups were organizing active resistance, we waged a big struggle in the community around postering. There was a group called Golden Broom, that was going around tearing down the posters that groups would put up to let people know about actions and meetings, and they had the support of the police, and we fought for the right to use the utility poles and trash cans in queer neighborhoods to communicate with each other in an unmediated way. We lost.

Now, we've even lost the right to communicate with each other in mediated ways. Ordinary queers have limited access to the queer press, we have no access to queer streets, we can't afford billboards – in fact, we can't even afford to rent meeting rooms in the Center. The Pride Committee has two types of information only booths. One is for the 501c(3) nonprofits, with their grants and paid staff, and costs $65, plus a $40 environmental fee and $55 for insurance. The other is for "free speech" and costs $80 plus $40 + $55. Because of our experience last year, they were willing to waive the environmental fee, so we can have a booth for $135. How is that free speech? It's not, it's $135 speech.

To be told what queer literature can and can't be distributed inside the queer Center, or at the queer Parade, is to lose our community. How do we engage with each other on political issues? The answer is we don't.

Gay Shame and others who dismiss the LGBT community as apolitical and apathetic are in a way right. The organized LGBT community is sold out, in the same way that the organized Jewish community is sold on Zionism. But it isn't because LGBT people are sold out or apathetic or apolitical, any more than all Jews are Zionists. It's because while weren't paying attention, our progressive grassroots institutions turned into corporate monoliths. It's time to take them back.

These institutions take enormous resources from our communities. They get all the grant money, they get all the bequests, they get your $5 guilt money at the entrance to the Pride Festival and the Folsom Street Fair, and they use a lot of volunteers. According to the Center's website, its budget for 2006/07 is $2million, of which 32% comes from the government, 24% from foundation grants and 16% individual donations.

When they take all that and then deliberately exclude all of us whose priority is not gay marriage, they are basically stealing from us.

Our queer institutions, the Center, Frameline, NGLTF, HRC, GLAAD, NCLR, etc., also claim to represent us. Among the objectives listed in the Center's mission statement are:

"- unite our community across lines of age, race, gender and economics

- give visibility to the history, culture and diversity of our community

- organize and plan our political and cultural future"

So they are going to organize and plan our political and cultural future without even giving us the opportunity to weigh in on what our political and cultural priorities are? By what right do they determine that gay marriage is an important issue to queers but where our queer cultural institutions get their money is not?

We can whisper down dark alleys that they don't speak for us, but who is going to hear us? I for one am not about to let them get away with it.

Where have I been?

2007-04-26T06:40:27Z

Where have I been? In bed, in my head, in cancerland, in radioland ...

My recent pieces on KPFA Women's Magazine:

Monday April 23: National Secretaries' Week, a time of lunches, flowers and umbrellas embossed with company logo. Some support staff appreciate the appreciation, but others say they do not want to go out to lunch with the boss. Clerical workers Kate Raphael and Rosemary Lenihan talk to from many of their coworkers about the meaning of this corporate holiday. http://www.kpfa.org/archives/index.php?arch=19871

Monday April 9: The progressive media was once the province of a white male elite, but we've come a long way baby. Or have we? An analysis of Democracy Now's 2006 coverage reveals that men were interviewed almost three times as often as women, and a recent issue of the Nation magazine featured no women writers. Today on the Women's Magazine we discuss these issues with Amy Goodman, host of Democracy Now, and Katha Pollitt, long-time columnist for The Nation magazine. http://www.kpfa.org/archives/index.php?arch=19634

The print version of my analysis of Democracy Now!'s gender gap is online at http://home.mindspring.com/~katrap/LAGAI/UVApril2007.htm#demonow

I have really taken good health for granted. All that's changing. I'm getting accustomed to huge energy spikes and drains, good days and bad days, all the things that I never really understood in my friends with chronic illness. I don't expect my illness to be chronic, just a temporary glitch in an otherwise healthy life. But it's a learning experience.

Now I'm feeling some better, so getting read to start writing again. Except it's kind of ... I don't know, daunting. I keep finding reasons not to do it.

New! Victoria's Secret Weapon Line

2007-02-12T04:18:12Z

QUIT! (www.quitPalestine.org), of Estee Slaughter fame, launched its new Victoria's Secret Weapon campaign yesterday, on a wet Saturday afternoon at San Francisco Center, the hideous megamall in San Francisco. The Shop Israel Bay Area site clued us in that "Most of the cotton bras in Victoria's Secret and some of the cotton panties in Victoria's Secrets are made by Delta Galil Industries." Delta Galil is Israel's largest textile manufacturer, helped to write its free trade agreement with Egypt, has been criticized by Sweatshop Watch for its exploitation of Arab workers, and in recent years has pioneered globalization by moving a lot of its operations to lower-wage countries such as Jordan, Turkey, Central America, Thailand, and Romania.

We thought it would be good if shoppers at Victoria's Secret had this information and we made a spectacular (if I, the designer, do say so myself) little full-color catalogue, available by download at www.quitpalestine.org.

Yesterday's action was planned as a fashion show outside the large Victoria's Secret store in the heart of the Union Square shopping district. However, an ill-timed rainstorm drove us inside, to the newly remodeled store inside the twin shopping center that houses Bloomingdales on one side and Nordstrom's on the other, with a host of other overpriced and overcrowded boutiques in between.

Some of us decided to do some research by attending a lesbian lingerie fashion show hosted by Nordstrom's earlier that afternoon. Yup, that's right. A lesbian lingerie show at Nordstrom's. It was everything we feared, and more, complete with very thin models who looked as totally bored as any human beings you've ever seen. So we were already in kind of a bad mood by the time we got our mass of props and costumes up into the lounge area outside VS.

We were there longer than one might have thought. It took us probably 15 minutes to set up and maybe 10 to get kicked out. During that time we ran through our entire ensemble three times (we only have four products right now - the Push-Em-Out Bra (endorsed from the grave by "there-are-no-Palestinians" Golda Meir), the Razor Wire Bra (the latest in apartheid technology), the Total Control Total Body Shaper (prime minister Olmert's favorite) and the bulletproof Secret Armor set, perfect for soldier girls from Nablus to Baghdad). In that short time, our leafleters handed out about 50 catalogues.

Well I woke up this morning with the sun streaming in my window and in an unusual fit of somethingness, instead of sitting around being annoyed, I grabbed about 200 brochures and headed down to the Union Square store. I got there about 12:50 and started handing out brochures. The first group of girls I gave them to went into the store and immediately started reading them. The salesgirls came over and they read them too. Pretty soon one of them came out and said, "I know you all (not sure who you "all" was meant to be) don't have a permit to hand these out here."

I said I knew "we" did not need a permit to hand them out.

She said, "Well I know you were at the mall yesterday, so I'm giving you a heads up that I'm going to call the cops."

I said it was very different to be in a mall than to be on a public sidewalk and that she should feel free to call the cops who would tell her I had a right to hand out leaflets on the sidewalk in front of her store. I also mentioned that I didn't think I was hurting anything. She said "It's disruptive." I said that I didn't think it was, but she might let her management know that this issue was coming up and they might want to stop using Delta Galil, because we have no problem with them or their store (well, except the objectification of women's bodies and the promotion of anorexia in their advertising, but hey ...). She said they had had "problems" before and been told that they could stop people from leafleting in front of their store. I said I was sure they had been told that they could stop people from doing it on their property but not on the public part of the sidewalk. She said she expected "we" had a lot more people coming. I didn't disillusion her.

She went back inside and I kept giving out literature - a lot of people took it, some didn't, many who did read the whole thing immediately, most did not give it back and none threw it on the ground. A few men chose to stay outside reading it while their womenfolk went in to shop.

A little while later, a guy showed up in what seemed to be either an old-fashioned doorman's uniform or the kind of thing Salvation Army guys wear to ring bells and ask for money. The saleswoman went to talk to him and then he came over and I saw that the tag on his sleeve said "SF Information." I guess he's some kind of private security hired by the Union Square businesses. He asked if I would do him a "favor" and not stand in front of the door. I said I wasn't standing in front of the door. In fact, I was being a lot more in the way than I would have been if I had not been trying religiously to stay off of their property, because they have very wide awnings and my understanding is that anything under an awning is probably considered their property. So I had to kind of stand in the middle of the people walking, rather than being nicely out of the way like the guy standing on a milk crate and leaning against their store asking for money, who they apparently did not see as causing any kind of problem at all.

I have to admit, I didn't do such a great job identifying who was actually going into the store, because -- what can I say? you just wouldn't believe it. So after a while I just started giving them to anyone who looked like they MIGHT go there, who looked at me and was interested. Which was a lot of people.

By the time the lone policeman showed up, about 1:30, I had one brochure left. He asked if I was the one they complained about. I said I guessed so. He asked what I was doing, I said handing out leaflets. He asked if I was blocking anything. I didn't point out that it would be pretty hard for one woman to block a 100-foot storefront with three entrances. I just said no. He asked if I was asking for money. I thought that was pretty funny, since (1) who would give me any, and (2) they didn't seem to care about the guy who actually was asking for money. But I said no. He said, "Okay, I'm going to go tell her what you're doing." Like she couldn't tell what I was doing. As soon as he went inside, I gave away my last brochure and figured there was no reason to wait around.

I'm working on a great website for this campaign, but you can check out some preliminary materials at http://www.quitpalestine.org/actions/victoria/vsindex.html.