Amy Durfee West’s Blog
“Throw your heart over the bars and your body will follow.”

posted by Amy on Feb 25

A little over a year ago I began to notice some breast changes. There was a small, flaky lesion on my nipple. Then I began to have some discomfort which I blamed on the underwire of my bra. I actually threw away one bra, thinking it was the cause of the pain. Then I noticed that the left breast was slightly larger than the right breast. That scared me, and I wrote about it in my journal, but it took awhile to pick up the phone and make an appointment. There was no lump.

By the time I got into a doctor’s office I had decided the flakiness might be eczema. I get it on the palms of my hands, so I know what it looks like. In fact, the PA gave me a referral to a dermatologist, who told me that was what it was and gave me medicine that cleared it up in a few days. But she also said I should go in for a diagnostic mammogram, and I scheduled that for April 5. That is a three-step process, involving a set of pictures with the regular paddles, another one with smaller paddles and more compression, and ultrasound. They found a “mass” in the left breast, one lymph node in my left armpit that the radiologist said was “a little too fat,” and calcifications in the right breast. They scheduled me for biopsies two days later.

The radiologist (the same one who had done the ultrasound) was now calling the “mass” a “tumor,” and told me I’d be getting surgery. I asked how big it was and she said “about one inch.” At that point I knew it was cancer. I was numb. It seemed unreal. I had to wait a week before I could go sit down across from my primary care doctor at BU Student Health and hear the words “invasive ductal carcinoma” and “atypical dysplasia.” The one “fat” lymph node also had cancer cells in it.

My doctor was very sympathetic. She told me she had been through it herself, and had had a bilateral mastectomy. You can’t help it. Someone tells you that, and you glance down at her chest. She had breasts, or appeared to. She said, “You have a fight ahead of you” and gave me a card for the BU “behavioral health” department. She also gave me a pamphlet about taking a leave of absence from school.

Somehow my mind had made room for other possibilities, though I could not imagine what they might be. Yes, it was cancer. Cancer. That was April 19. I had my first meeting with the breast cancer “team” at my hospital a few days later. Getting a diagnosis was surprisingly unhelpful. So was meeting the “team.” There would be more tests to complete the “staging,” then chemo, surgery, and maybe radiation. I got a book and a folder full of pamphlets. I was barely processing what I heard.

After a breast MRI and CT scan I was called in again in early May, this time to meet just with the breast surgeon. She said the bone scan was clear, but there were a “couple” of spots on my liver and lungs. They’d need to biopsy the liver, and if that was benign or inconclusive then they’d biopsy my lungs. She tried to talk me out of taking a trip out of town that she had previously said I could take. The liver biopsy was scheduled for May 17, after I got back.

The radiologist who did the liver biopsy said the lesions had shrunk. He even asked me if I had started being treated. He said the target was so small he wasn’t sure he had gotten a good sample. That made me feel a lot better. Surely it couldn’t be cancer if it was healing on its own.

A week later I called to get the results. My oncologist asked me if I could come in the next day to talk about it. I was in DC for my daughter Lily’s graduation from Georgetown, so no, I couldn’t be there the next day, but I could be there in two days. I asked her to tell me what the test showed. She hesitated, then said there were cancer cells in my liver, but that the cancer would be “very manageable.” Another shock. Stage IV. All I knew about Stage IV was from a drawing in the book the hospital had given me. It said breast cancer can spread anywhere, but especially to the bones, brain, liver and lungs. It showed the outline of a woman with ugly black blobs in those areas.

When I met with the oncologist she told me my cancer was HER-2 positive, and that there’s a medication called Herceptin that uses a monoclonal antibody that can help my body fight the disease. Then she talked about various other drugs we could use along with the Herceptin. I opted for Taxol, a harsh but potentially effective cytotoxin. I figured it was my best chance to knock the cancer back. She told me we’d be trying for “permanent remission, normal lifespan.” I liked the sound of that. She said I’d do twelve weeks of Taxol and Herceptin every week, then get just Herceptin every three weeks until it had been a year.

I just saw my oncologist last Wednesday. She left it up to me to decide when to get another scan. My cancer doesn’t put out tumor markers, so scans are the only sure way to monitor my progress. I said I’ll wait until May. She examined me and said everything looks good. I knew that. I feel fine. I have plenty of energy. My brain is working fine. I am sleeping well. My vital signs are good. I have no complaints.

As I was leaving I said, “If I didn’t know better I’d swear I was in perfect health.” She said, “You might be in perfect health.”

I know this: my wholeness goes beyond my physical condition. My life is meaningful, good and full no matter how many more years I get to live. Healing in the sense of peace, acceptance, and feeling held securely in God’s hands does not depend on my being disease-free. There is freedom in that. It is a strange freedom, but quite real. No one wants to die, but we all will. I know more now than I did a year ago about the likely path my last years will take, though I don’t know when that phase will start. Apparently I have knocked the cancer back. It could even be permanent, though it’s too soon to tell. So cancer rides around on my shoulder. Like all the other demons I’ve faced down, I’m trying to make friends with it and find out what it has to teach me. Anything you put energy into opposing directly can end up owning you. It can deprive you of the joy of living without laying a finger on you. Rehearsing all the possible outcomes or recollecting past trauma can be a kind of living death. I don’t want that.

Last Friday I learned that I have been accepted into the ThD program at Boston University School of Theology. I am waiting to hear from two other programs, though I’m pretty sure this is the offer I will accept. I’m going to study social ethics. If I do the ThD through the seminary I will minor in evangelism. I want to teach pastors, social workers, teachers and others who work in under-resourced neighborhoods how to be change agents.

posted by Amy on Feb 12

As you probably know, the Susan G. Komen for the Cure Foundation (SGK) recently decided to quit providing grants to Planned Parenthood to help women obtain clinical breast exams and mammograms. Then there was a huge backlash. Then they may have reversed the decision and restored Planned Parenthood’s eligibility to apply for future grants. (At any rate, they redefined the applicable criterion for disqualification so that it doesn’t include “political” investigations, which was the reason they gave for the decision to de-fund Planned Parenthood.) Then Karen Handel, the vocal opponent of abortion and declared enemy of Planned Parenthood, who was hired by SGK last spring, resigned. She insisted she had nothing to do with the decision. She also blamed Planned Parenthood for manufacturing the outrage.

A lot of the outrage had to do with losing the illusion that SGK was, as Andrea Mitchell put it, “bipartisan.” We like to think that since all women (and even a few men) are at risk of getting breast cancer, this is one issue no one disagrees about. Everyone wants a cure. We’re all on the same page. Right?

I don’t think so. When I look at this situation, I see a pervasive war on women, especially poor women. Behind that is a patriarchal attitude towards women–as not fully human or fully rational, as not responsible, and as not serving any purpose other than as defined by a Bronze Age culture that elevated a male diety above all other gods and devised a system of laws and mores intended to control women’s sexuality. They did that so men would be sure that only their biological offspring inherited their property. Women and children were property themselves, and so had no inherent rights in the family wealth. In cultures where women are truly valued (and there are some), people aren’t as hung up about sex, contraception, abortion, and divorce as that one was (and is).

Behind the abortion debate, behind the desire to get rid of Planned Parenthood, behind the recent flap about requiring religious hospitals and universities to follow the same rules about providing contraception as everyone else has to follow, behind “welfare to work” that simply ended welfare and dropped people off a cliff, behind the controversy over same-sex marriage and/or adoption, behind the “Quiver full” movement and the ethic of female submission to men–in church, in bed, and in society–is a fundamental value judgment. The purpose and function of womankind is reproductive, because it’s the one thing woman can do that man can’t. Therefore the purpose and function of every woman is solely for making babies for a man to whom she is married. That’s what marriage is about; that’s what society is for.

To that Bronze Age set of assumptions about women as property–first of their fathers and then of their husbands–we have added neoliberal individualist consumerist culture. In a way, capitalism is an extension of those early assumptions about property. Property has been sacralized. Our economic system doesn’t serve us; we serve it because we worship Mammon. Ethics get subsumed under a “rights” analysis with money at its core. People with money are good. Poor people are, therefore, “less than.” People think they created their own property and the rest of society has no claim on it. In its extreme form, in our country, health care is done for a profit, and is connected to people’s jobs. It’s a privilege afforded only to people with jobs that include benefits. It’s not a right.

The result, among other things, is that organizations like SGK have turned a public health issue into “cause marketing.” Nancy Brinker promised her sister, who died of breast cancer, that she would find a cure. She founded SGK in honor of her sister and with the intent of making good on that promise. The organization has done a huge amount of good, and I am grateful. I’m not here to demonize SGK, but to point out that it has become a PR firm for its corporate sponsors. They’ve confused the means for the end. Their stated purpose is to cure breast cancer, but they’ve gotten in bed with the cancer industrial complex and they’ve started trading on misery and rebranding it as “hope” and triumph. Slapping a pink Komen logo on a product makes it sell because it makes people think they’re doing something. That has become SGK’s true mission–making more money.

An individualist, consumerist paradigm permeates the effort on both sides of it. People who want to “help” and people who need “help” are, equally, volunteers. People volunteer to walk, run, sleep over, etc. “for the cure.” They buy stuff with pink ribbons on it, and think they’re supporting efforts to find a cure. SGK has actually trademarked the phrase “for the cure” and has spent up to one million dollars on lawsuits against other groups that use it. But SGK allocates the bulk of its income to “education,” and what it tells people is to get screened so they won’t die. Never mind the fact that there are serious questions about whether screening has anything to do with the modest drop in the death rate from breast cancer that we’ve seen recently. Also never mind that the notion that breast cancer is something that starts small, invariably gets more dangerous over time, and can be cured if found early enough is also untrue.

The result of using cause marketing to attempt to solve the public health crisis that breast cancer represents is that the public has been seriously misled and the 40,000 people who die from breast cancer every year in this country have been erased from national consciousness, or blamed for their own deaths.  Women think they are much more likely to get breast cancer than they really are, and they think that if they get it, they are very likely to be cured if it’s caught “in time.” SGK tells them it’s entirely up to them how this will turn out. There’s a focus on “risk factors” such as having babies and breast feeding them (or not), having a family history of the disease, and so on. In fact, most people who get breast cancer have no controllable risk factors OR family history.  The single biggest risk factor for getting breast cancer is being a woman in an industrialized country.

It comes down to ideology in this way: Liberals have, however imperfectly, a notion of the common good and of justice for all. I look at our abortion rate, and I completely agree that it is appalling. But instead of seeing solely individual moral failure I see it as a symptom of a deeply dysfunctional society that creates oppressive structures and then blames people for being caught in them.

Conservatives see only personal agency. They think it’s a matter of individual “choice.” When poor women end up with unwanted pregnancies it’s their own damn fault. If they don’t want or can’t support a  baby they shouldn’t be having sex. The most extreme expression of this view even punishes the victims of rape and incest for getting pregnant by saying they should be forced to go through with it.

We see this exaggeration of personal agency in “abstinence only” sex education. Never mind that a battered woman might find it safer to have unprotected sex than to say no to her drunk, abusive husband or boyfriend. Never mind that our culture has so sexualized women that girls are raised with the unrelenting message that their only value is as sex objects. Never mind that people still think “boys will be boys” and are inclined to excuse all manner of sexual violence on those grounds. We also see it in the lack of public funding for day care, in the paucity of affordable prenatal care, in the willingness to cut food assistance for poor people, and in the Hyde Amendment, which prohibits public funds from being used for abortion.

The idea that a woman owns her own body is threatening. The idea that, like a man, a woman might find sex pleasurable or fulfilling in its own right is also threatening. And the burden of this displeasure falls disproportionately on the poor. Rich women can get health care. They can afford contraception. They will always be able to go someplace safe and hygienic if they ever need an abortion. But the poor don’t have any economic power, so we can punish them with impunity.

The religious right thinks Planned Parenthood is nothing but an abortion “business.” They want to kill it off, and they don’t actually care about the damage that will do to the people who rely on it for their primary health care. For that matter, from comments I’ve seen from the right, they don’t even believe Planned Parenthood does provide health care.  And, despite a small amount of funding for community health initiatives, SGK has the values and mores of the rich Republicans who serve on its board. Their individualist, “free market” approach to fund raising and funds allocation made it inevitable that they would eventually express their class’s animus against Planned Parenthood and the poor women it serves. It’s in their DNA.

They do not promote health care for all. They do not do anything about the gross disparity of breast cancer outcomes traceable to the race and social class of the people who get it. They take money from businesses that pollute. They sell a perfume called “Promise Me” that is formulated with known carcinogens. And only around 20% of the money they bring in actually goes to research. When you look closely at Komen’s message of hope, triumph, choice and individual responsibility, you can easily understand why.

As a Christian who believes that our concept of God and morality not only can but must change, and that the culturally-bound parts of the Bible can be distinguished from the universal truths about God, humanity, and holiness, and that, as John Wesley said, there is no holiness without social holiness, I am deeply disturbed by this war on women. The way any society treats its most vulnerable members is a perfect litmus test for the validity of its values. On that basis, our society is horrendously immoral. “Pink Ribbon” culture profits from the misery, suffering and death of people who have cancer and absolves society of all responsibility for their suffering. People are treated as means to an idolatrous end–money and power. It doesn’t have to be that way, and it is  a huge embarrassment to me that the Christian Right is implicated in this scandal.

Some of the ideas for this post came from other authors. I commend them to you if you want to know more. You can find them HERE, HERE , HERE and HERE.