Cause and Effect

A week or so ago, I had the late news on TV while I was doing some household chores, and I heard a teaser for what was coming up that caught my interest. They were announcing a breakthrough in research offering new hope to people who suffer from migraines. I have several friends who suffer from severe migraines, so I ran back into the living room to be sure not to miss the item. Guess what the breakthrough was? Turns out that the main cause of migraines is … drum roll please … you guessed it, obesity! Since the two people I was hoping to be able to tell that their days of suffering are over are both painfully thin, I turned off the TV in disgust.

A week later, a news headline in the elevator at work – those of you who read my last blog are going to suggest I stop reading those headlines – announced that the common thread linking people who had died from the H1N1 virus is – da da da da – yup! obesity again! More specifically, “stomach obesity,” leading to the headline, “Fight The Flab To Fend Off Swine Flu.” Okay, I admit, I’m not an epidemiologist, but I found it really hard to believe that among Mexican college students, New York schoolkids, Argentine workers and Indian computer programmers, everyone who was fat got H1N1 and died from it and no one who wasn’t obese did. Of course, my skepticism turns out to be right – the obesity-swine flu-linkage data are only for the U.S., the samples are small, most of the research was on mice, and the people doing it were, not surprisingly, obesity researchers.

Last week it was hot dogs. Apparently the hot dogs they sell at ballparks cause colon cancer – at least, that’s how they reported it on the news. Cause for concern, even panic. I thanked my stars that I’ve never eaten a hot dog at a ball park, and haven’t eaten a hot dog period in over 35 years. But wait. If eating hot dogs caused colon cancer, then at least 10% of the population would have colon cancer, because surely at least that percentage of people have gone to a ball game and eaten a hot dog there. So maybe that’s not quite what they mean. Presumably what they meant to say is that eating hot dogs increases your risk for colon cancer. In fact, the spokesperson from the group suing to get warning labels on hot dogs says, “Just as tobacco causes lung cancer, processed meats are linked to colon cancer,” so he sort of splits the baby, implying cause-and-effect without quite asserting it.

I learned about causation and risk factors years ago in the AIDS movement. The issue of whether the HIV virus causes AIDS is one that has been rumbled about in activist and scientific circles for years. In general, the scientific community put it to rest in 1993, by modifying the definition of AIDS to include the presence of HIV. But before that, most of us accepted that HIV, along with other risk factors, does cause AIDS, while a small but vocal group who became known as “AIDS deniers” insisted that HIV was a harmless virus that happened to be present in people who had a collection of unrelated illnesses with no known cause. In between there were some scientists who generally accepted the HIV-AIDS linkage but were troubled by the existence of a few people who had HIV but never developed AIDS and a few cases in which people seemed to have the symptoms and other markers of AIDS but no HIV. The AIDS deniers seized on this data to point out, correctly, that in order for something to be the “cause” of something else, it needs to be present in every case.

A friend from the AIDS movement, who had been homeless for many years and is a housing rights activist, used to get furious when people suggested that drug use and alcoholism “cause” homelessness. She would point out that if that were true, then Elizabeth Taylor, Betty Ford and Ted Kennedy, among many others, would be homeless. I got her point, but also felt that in making it she seemed to want to deny that there was any connection between alcoholism or drugs and homelessness. I’ve definitely known people who were housed when they weren’t using drugs or alcohol, and homeless when they were. It’s true that their homelessness was also caused by poverty, because when their friends/roommates/girlfriends threw them out, they had no alternative to the streets, while if they’d been rich, they could have gone to hotels or rented apartments. But if our definition of “cause” and “effect” is that there has to be a one-to-one relationship, then poverty is also not a “cause” of homelessness because plenty of poor people are not homeless. We can’t say that capitalism or greedy landlords or even our general lack of compassion as a society causes homelessness, because most of the people who live in this wretched capitalist uncompassionate society still have homes, however tenuously they’re clinging to them.

Once I started thinking about these contradictions, they kept popping up everywhere. Most recently, they appeared in my reflections on the controversy over today’s showing of the film “Rachel” at the Jewish Film Festival.

The Zionists constantly claim that Hamas is the cause of Israeli violence, and in fact, that Arab intransigence is the cause of the entire conflict between Israel and the Palestinians, and between Israel and its neighbors. And I wonder how anyone can make that claim, when Hamas never existed until 20 years into the occupation of the West Bank and Gaza, 40 years after Israel conquered most of the land that had been allocated by the U.N. for a Palestinian state. It seems quite clear to me that the root of the problem is Zionist aggression and insistence on having a Jewish state in land that other people had been living on for generations. But to them, that is a mere outgrowth of the underlying problem, of which Hamas and the Palestinians and Iran are a symptom, which is the irrational, inevitable and omnipresent hatred of the Jews.

Inevitably this line of thinking leads me to the desire to be rid of my association with this group of crazy fanatics who call themselves the “Jewish community.” As I went from the Women In Black vigil outside the movie, “Rachel,” about the death of Rachel Corrie, to a huge rally in solidarity with the people of Iran (where, according to an Iranian friend, many people were carrying monarchist flags – yuk!), I told myself, “These people cannot make me hate being a Jew. They are not fomenting all this hatred and attempting to censor everyone who disagrees with them because they’re Jews.” But how can I say that, when they insist that they are doing it because they’re Jews? How can I say that their Jewishness is not the cause of their viciousness, if they say that it is? Just because I’m not like them and I’m a Jew, my friends from Jewish Voice for Peace and the International Jewish Anti-Zionist Network aren’t like them, isn’t that just like saying, but there are poor people and alcoholics who aren’t homeless?

Does it matter which is the chicken and which is the egg? Does it matter if eggs or chickens are more likely to cause obesity? Isn’t the thing that really matters that both the chickens and the eggs be able to enjoy their chickenness or their eggity? Has anyone studied the negative health impact on “obese” people of constant haranguing about the health risks of their weight? Probably not, because what obesity researcher wants to know that, but a recently released Harvard study found that “only women gain weight when stressed about strained family relationships, while men gained weight when stressed about their lack of decision authority and their ability to learn new skills at work.” As if that told us something we didn’t know, or needed to know.

I decided some day, if I get rich enough to fund studies (you’re holding your breath on that one, I know), I’m going to commission a study on the health advantages of political activism, because I’m pretty sure that’s what accounts for my having fewer health problems than most people I know, despite my love of fried things and ice cream.

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.

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.

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.)

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!

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?”

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 café a few blocks from my house, but about 15 minutes after we sat down, I was nodding off against the window. I got home and pretty much fell down on the couch, slept for most of an hour, got up, went to acupuncture, fell asleep with the needles in me, woke up feeling a little better, got home, slept.

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

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

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

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

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

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

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.)

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.)

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?"