Saturday, July 7, 2007

Why Me? Why Us!?!

July 4, 2007

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

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

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

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

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

The first heading under “Environmental Risk Factors” is “Lifestyle Risk and Preventive Actions” and it says: “What we eat and drink and how active we are play a role in breast cancer. Research has shown that the following lifestyle choices increase a woman's risk for breast cancer:

- Consuming one or more glasses of alcohol a day

- A sedentary lifestyle

- Being overweight (especially after menopause)

By contrast, the following factors have been shown to be protective against breast cancer.

- A diet high in fruit and vegetables

- Regular exercise”

This is followed by the heading, “Exposure to Environmental Toxins” under which the text reads:

“Controversy exists about the role of environmental toxins and breast cancer. Scientists agree that exposure to high doses of radiation before 30 years of age, such as being treated for Hodgkin's disease, places women at increased risk for breast cancer. Possible, but controversial, environmental risks for breast cancer include:

- passive smoking (second-hand smoke).

- PAHs (polycyclic aromatic hydrocarbons) produced by the burning of coal, oil, gas, garbage or other organic substances.

- certain organochlorine compounds, such as the polychlorinated biphenyls (PCBs) formerly used in consumer and industrial electronics.

Research has shown that human exposure to electromagnetic fields and DDT/DDE, a now-banned but previously widely used pesticide, are not associated with increased risk for breast cancer.”

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

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