Tuesday, November 20, 2007

New Tattoo!

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.

Tuesday, October 30, 2007

Hair 2.0

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.

Sunday, September 30, 2007

Five O'Clock Shadows

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.)

Monday, August 27, 2007

My Pieces on KPFA (Radio) Women's Magazine

August 20, 2007: Three U.S. activists detained in the Philippines

July 23, 2007: Zimbabwe, interview with local musician Julie Drucker, who recently returned from Zimbabwe, about the economic collapse in that country and how it is affecting the lives of the traditional women musicians

July 2, 2007: The Avon Walk Against Breast Cancer, boon or boondoggle? Interview with Barbara Brenner of Breast Cancer Action

April 23, 2007: Secretaries Day, my friend Rosemary and I interview our coworkers about the meaning of this corporate holiday,

April 9, 2007: The Left Media and the Gender Gap. Interviews with Amy Goodman, host of Democracy Now, and Katha Pollitt, long-time columnist for The Nation magazine

December 4, 2006: International Day Against Violence Against Women, discussion with Janelle White from San Francisco Women Against Rape; Joy Duenas from Gabriela Network; Athena Colby, author of a study on human rights abuses in Haiti

August 14, 2006: Israeli Palestinian and Jewish feminists on the Israeli peace movement in the face of a new assault on Lebanon

June 5, 2006: "Interrupted Life: Incarcerated Mothers in the United States,"an art show currently showing at New College of California. Interviews with curator Rickie Solinger and organizer Helene Vosters, as well as two formerly incarcerated mothers: Angela Wilson, who now teaches theater in jails and prisons, and Linda Walker, an activist with All of Us or None.

November 7, 2005: Human Trafficking: Not Just About Sex (mine is the second segment)

July 18, 2005: What Choice California? Interviews with Parker Dockray of ACCESS Pro-Choice Women's Health Information and Referral, Dr. Eleanor Dray of San Francisco General Hospital, and Saundra Spears, on the challenges of finding and funding abortion in California

June 20, 2005: Lesbians in Palestine, an interview with Alex, member of ASWAT-Palestinian Gay Women

Sunday, August 19, 2007

And then there were none

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!

Saturday, July 7, 2007

Why Me? Why Us!?!

July 4, 2007

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 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?”

Friday, June 8, 2007

Chemo Is Hell

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 cafĂ© 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.

Tuesday, May 29, 2007

Open Letter to Cindy Sheehan

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

Thursday, May 24, 2007

Hair

May 24, 2007

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.)

Wednesday, May 16, 2007

Susun Weed and the 7 Deadly Nodes

(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.)

Tuesday, May 15, 2007

I Dreamed I Went to Gaza in My Secret Armor Bra


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.

Saturday, May 12, 2007

What's So Special About Me?

May 12, 2007

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.

But 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, 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 do the dishes, 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 feeling fatigued?"

Support from friends and colleagues isn't about cashing in credits we've earned. 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?"

Tuesday, May 1, 2007

Queer Institutions Have Stolen the Queer Community

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.

Monday, April 23, 2007

Secretaries' Day on KPFA

KPFA Women's Magazine acknowledges Administrative Professionals' 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 share interviews from many of their coworkers about the meaning of this corporate holiday.

Listen at http://www.kpfa.org/archives/index.php?arch=19871.

Monday, February 12, 2007

Democracy Now! and the Gender Gap

Democracy Now!, the largest progressive media collaborative in the country, calls itself “The Exception to the Rulers.” But when it comes to inclusion of women as sources, DN! is not so exceptional.

A friend turned me on to Pacifica Radio’s daily newsmagazine shortly after 9/11. Since then, I have listened to it almost every day. I’m in good company. As host Amy Goodman reminds us at the end of each broadcast, they are broadcasting on over 450 radio stations in North America, including Pacifica, NPR, community, and college radio stations; on public access, PBS, and satellite television, and podcasting on the internet.

Sometime in September, as election coverage started to take over more and more of the hour, it occurred to me that I couldn’t remember when I had last heard a woman on the show other than Amy. I looked at their website, to see if my perception was correct. In fact, in the seven weekdays from September 21-29, Democracy Now! interviewed only one woman on the show. The one woman interviewed during that week, the wife of a military resister who had turned himself in, was not the main spokesperson on the issue.

Was this an aberration? I didn’t think so, but I didn’t want to jump to conclusions. I started going through the last several months’ shows and recording who was interviewed about what. Eventually, I decided to analyze the whole year.

The facts

Women were 28% of all guests on the show in 2006.[1] 38% of broadcasts did not interview any women, while 4% did not interview any men. 78% of the time, there were more men than women on the show. Most broadcasts contained 2-3 interview segments; 35% of segments included women; 82% included men.

While these numbers make it clear that women were seriously underrepresented on DN!, looking at which segments most often include women and which do not is more revealing.
“Experts” - journalists, authors, scholars, filmmakers, lawyers, and staff of major nonprofits - make up the backbone of DN, as of any news magazine. These experts were 58% of all guests in 2006, supplemented by activists and people with a personal stake in the issues (you might say “victims”). Only 22% of expert guests were women.

When only one person is interviewed on an issue, that person is most likely to be an expert, and thus most likely to be male. A majority of segments consisted of interviews with only one person, 75% of whom were men. Similarly, people who are invited onto the show regularly are mainly experts. Of 34 people interviewed at least three times during the year, 24% were women.

Women were underrepresented on almost all topics covered on DN! in 2006. I identified 272 separate topics covered. Women were never interviewed on 59% of them, while men were not interviewed on 15%. Out of the top 28 topics (ones on which at least six people were interviewed in two or more segments), women were a majority of those interviewed on only two: AIDS and “women’s issues.” Women’s issues,[2] including such topics as women in Iraq, sexual harassment, abortion and the death of Betty Friedan, were addressed by 22 speakers during the year. Only one of those “women’s issues,” sexual harassment in the military, made it into the top 28 by itself. There was no topic among the 28 on which men were not interviewed, including, obviously "women's issues."

Women were 26% of people interviewed about Iraq, 25% on Israel/Palestine, 14% on Lebanon, 39% on New Orleans, and 26% on subjects related to U.S. elections.

What it means

These statistics signal a serious lack of attention to the inclusion of women’s voices.
They are far better than those for mainstream public affairs programs, such as Fresh Air with Terry Gross, the McNeil-Lehrer News Hour or Meet the Press. In a cursory look at Fresh Air’s recent broadcasts, I had to go back nine shows to find one woman guest. In the last six months of 2006, 8 of 92 guests on Meet the Press, or less than 9%, were women.

On the other hand, a 2005 study by the Project for Excellence in Journalism found that in 45 different news outlets, “More than three quarters of all stories contain male sources, while only a third of stories contain even a single female.”[3] By this analysis, DN is neither better nor worse than average - 35% of its stories, or just over one-third, included women; 82%, or over three-quarters, included men.

I don’t believe Democracy Now is deliberately booking more men than women, although, since the show is hosted by a woman, she or her producers may feel their gender bases are covered. More likely, they are simply failing to rise above the social reality that men still have more power in this country than women.

In this country, men are a majority of college professors (72%), reporters (63%) and bestselling nonfiction authors (68%).[4] So a list of expert sources on most subjects is likely to be top-heavy with men. Women were 42% percent of lawyers interviewed on DN! last year, but only 21% of public officials, closely reflecting the proportion of women in those professions nationwide.
If, though, Democracy Now! and other progressive media want to have gender parity, there are a number of things they could do to improve their chances:

1) Stop privileging experts over activists, and rethink who is an expert. Rather than acting as gatekeepers to make sure that only those with the right credentials get on their show, the producers of a program called Democracy Now! might think of their mission as democratizing the airwaves by giving a voice to people who don’t have access to other media.

KPFA Pacifica’s daily talk show Against the Grain has a policy against interviewing anyone more than once a year. Their goal, says former producer Sasha Lilly, is not to create movement stars but to air a diversity of perspectives. Seymour Hirsch and Robert Scheer, both smart and interesting guys, don’t actually need Democracy Now! to get their ideas out; they both write regularly for major U.S. newspapers and magazines. By giving more air time to ordinary people who are doing things to increase democracy in their own communities, DN! would do more to foster democracy now.

2) Cover a broader range of issues. Of the 609 segments produced in 2006, 309 (51%) were devoted to 24 topics. Only two segments all year dealt with India, one with China, none with Romania, El Salvador, Guatemala, Sri Lanka, Pakistan, or Rwanda.

Stories that DN! did not cover at all in 2006 include:
· National Coming Out Day
· Women’s History month
· the burgeoning feminist protest movement in Iran
· welfare
· the arrest of all six progressive members of the Philippine Congress on sedition charges
· the first major United Nations report on violence against women
· organizing by restaurant workers, hotel workers or exotic dancers
· the coming out stories of WNBA MVP Sheryl Swoopes and Wimbledon champion Amelie Mauresmo
· the arrest and trial of Mexican journalist Lydia Cacho for exposing a child sexual abuse ring
· the approval of the morning after pill for over-the-counter use
· the ongoing women’s peace camp outside a U.S. air base in Scotland

3) Cultivate women as sources on issues that are covered frequently. Katha Pollitt, Urvashi Vaid and Cynthia Cockburn, none of whom were on DN! last year even once, are as knowledgeable and articulate as Seymour Hirsch, Dahr Jamail and Noam Chomsky, each of whom was on at least 3 times. There is no subject on which there are no women experts, from nuclear physics to the nuclear family. If at least half of the people on your list of sources are women, there’s a good chance of achieving close to parity.

4) Don’t assume that women need men to restate what they’re saying or put it into a broader context. In activist circles we joke that if a woman has a good idea, a man should repeat it and take credit for it. The media version of this is that women are interviewed as victims or activists and men are interviewed, often more at length, for political analysis. But women, given the chance and encouragement, are usually more than competent to provide their own analysis.

Some years ago, when Helen Mirren burst into the limelight as Detective Chief Inspector Jane Tennyson, a reporter asked her if she was going to fight for better roles for women on television. She said no, she was going to fight for better roles for women in the world, that television mirrors society.
Democracy Now! did not create male supremacy; it simply reflects it. Alternative media, however, should not just mirror society but critique it. Will Democracy Now! live up to this challenge or will women be left asking, "Democracy When?"

Postscript:  After publishing this article in 2007, I invited Amy Goodman, along with Katha Pollit, onto my radio show, Women's Magazine.  As gently as possible, I pointed out to Amy the show's lack of gender parity.  She seemed pretty surprised and took the critique seriously.  Two years ago, I decided to do the analysis again, to see if the numbers had improved at all.  To my disappointment, the statistics for 2008 were a little bit worse than those for 2006, both in terms of overall percentage of women guests - 26% down from 28, and broadcasts with no women guests - 40% up from 38.  That year, I also surveyed The Nation, probably the leading progressive weekly print magazine.  It did not fare any better:  Women made up about 27% of contributors and 25% of sources.
 

[1] This data counts only people who were actually interviewed on the show (either recorded or live), not people whose voices were heard in features, clips of movies or radio documentaries, brief news stories, Congressional hearings, or vox pops (audio collages).
[2] In fact, all issues are women’s issues, but not, as we have seen, according to the media.
[4] Interestingly, women are 57% of best-selling fiction authors http://www.complete-review.com/quarterly/vol3/issue4/sexist.htm).