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.

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

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.)

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.

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?"