Wednesday, May 16, 2007

Susun Weed and the 7 Deadly Nodes

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

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

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

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

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

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

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

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

BC (Before Chemo), before I knew for sure I would be encouraged to have chemo, I told people that if anyone told me to get chemo, I would keep looking until I found someone who told me not to. By the time I woke up in the recovery room, the surgeon had already told my friends that I had seven positive lymph nodes (the 7 Deadly Nodes, I call them) out of a total of 21 removed from my breast and axilla, and therefore would need to have chemo. She reiterated this to me in my dopey state. When I was feeling better enough to use the computer, I started the process of finding that elusive countervailing opinion. I read article after article on and, 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.)

1 comment:

  1. I really enjoyed reading that. I'm interested in knowing how you're doing these days.