New Reviews!

from The Washington Diplomat: “A groundbreaking book focusing on the life-altering, long-term post-treatment body changes and side effects that are often ignored by a culture that prefers celebratory pink-ribbon breast cancer stories.”

From Centre Daily: “This compelling work questions what it means to “cure” disease and should be of interest to the medical community, cancer survivors of all types and those who face medical symptoms that cannot be validated by traditional means. These authors are marking a new developmental phase of cancer care that may lead affected persons to seek partnership with their physicians to combat the long-term side-effects of cancer and its treatments.”

Three New Articles about the Book

A nice interview that the UCLA Bookstore posted.

Oncolink did a lovely review.

And here’s one more from the Feminist Review.

A New Review of After the Cure

Check it out at Macleans:

Breast cancer awareness month, also known as October, came and went with scant attention paid to a new, groundbreaking book: After the Cure: The Untold Stories of Breast Cancer Survivors by Emily Abel and Saskia Subramanian. Then again, stories of women coping with life-altering, post-treatment maladies have remained “untold” for a reason. As Abel, a professor of health services and women’s studies at the University of California, and Subramanian, a sociologist at the UCLA Centre for Culture and Health, point out, the topic runs counter to the “celebratory breast cancer culture,” one filled with inspiring narratives of good health and spiritual rejuvenation.

That wasn’t Abel’s experience after radiation and chemo for breast cancer in 1993. Her doctor told her recovery would take a year; to this day she still suffers from fatigue. She began noticing a “cone of silence” around the subject of health when talking with other survivors: “Everybody was supposed to say ‘I’m fine, I’m great’ and of course we were fine—those of us who survived were really very lucky and we did consider ourselves fine. But we began to realize we also had other problems that no one was paying much attention to.”

Open Discussion Thread

The authors would like to hear more from you. Please feel free to discuss your experiences in the comments section of this thread.

Thanks!

After the Cure reviewed by Publishers Weekly

After the Cure: The Untold Stories of Breast Cancer Survivors
Emily K. Abel and Saskia K. Subramanian. NYU, $22.95 (182p) ISBN 9780814707258

A professor and an assistant research sociologist, respectively, at the University of California, Los Angeles, Abel and Subramanian speak with scores of breast cancer survivors to explore, in depth, the post-treatment symptoms caused by radiation, chemotherapy and surgery, “giving voice to a neglected aspect of the breast cancer experience.” The women talk with Pat Garland, for example, whose treatment left her with several debilitating symptoms, including chronic joint pain in her arms and legs, that her doctors dismissed: “there was no validation… They saved my life, but then the value of my life after they saved it with the chemotherapy was zero.” The authors hear similar stories from other women such as Ida Jaffe and Leanne Thomas, whose post-treatment symptoms include “hot flashes, dental and vision problems, insomnia, memory loss, fatigue and depression.” With cogent, compassionate analysis, Subramanian and Abel (herself a survivor) remind us of the lasting effects of cancer diagnoses, and the tremendous work still ahead for patients who must learn to trust their gut, and doctors who must learn to listen more considerately. (Nov.)

Saskia on ABC Baltimore

Talking about her movie & the book.

Click here to watch!

Excerpt 5: Turning a Bad Experience into Something Good

When I was ill, I had a small circle of people that knew. I got so much from people. It was truly moving how people were there for me and my family. I’ve always been someone who felt this way, but it was so underscored that just really, what life is about is human connection. I really witnessed firsthand the power of kindness, and it really changed me. Not that I wasn’t a kind person before, not that I didn’t value relationships, but it was really a profound experience being a recipient of that. Ever since I’ve had cancer, really all I’ve wanted is to give back. I think cooking is part of that, giving food to people. And not just making it slapdash, but making an effort and putting something of myself into it. It’s more of an offering that way.

Like many African American women, Ida Jaffe framed her transformation in religious terms: before cancer, “my life was on a fast track of shopping and me. It was all about me. I never took the time to call people. I wasn’t a caller, just talk to people to see how they are or what’s happening in your life. I was never that kind of person. It was all about me.” But “God saw something in me that he wanted to change. He had been telling me to change, and I wouldn’t change, and so he gave me time to think about it and make a change in my life and make it for a good thing. Now I’m able to see and help other people, but before this I wouldn’t have taken the time of day.” When her mother fell ill, Ida was able to help:

I think this was one of the greatest things that came out of me having cancer. My mother was diagnosed with cancer four years after me. I was able to mentor my mother. Even saying it was my mother, I don’t think I would have taken the love, time, and care to actually take care of her. I moved back to Ohio and lived there for two years to take care of my mother. She was diagnosed at ninety years old. I took care of her for two years, and I mentored her through her cancer, and she eventually passed away. I lived there and took care of her. Just to be with her every day and tell her, “This is what you’ll go through, and this is what you’ll experience.” She didn’t have the chemo and radiation because she herself decided against it. She was happy. She was OK with where she was. The cancer had metastasized throughout her body, but yet she was a happy person I think because I was there to say I’d been there, done that: “These are some of the things that you’ll go through.” Had I not had cancer I couldn’t have done that. I tell people that your mother is your trainer through all of your life. You learn the most important lessons from your mother. I had the joy of my mother birthing me, leading me through life, but in the last stages of life, my mother taught me how to die gracefully. That was the biggest lesson for me.

Excerpt 4: Marge Barlow & The End of Treatment

When [Marge's] treatment ended,

I didn’t really know if I wanted to be back in the world of the well. I didn’t want to be back in my old life, up at five, working until eleven. Everybody’s telling me these things about how stress contributes to cancer. I’m thinking, “I’m not going to blame myself for my cancer, but how do I become not stressed?” And people are saying all these things about how this is a wake-up call, and now you should change your life. And I resented that, and it made me angry because I had just changed my life. I quit fifteen years as a lawyer, went to graduate school, moved to this goddamned L.A., and now they’re saying this is a blessing. I thought, “This is ridiculous.” That’s one reason I stopped going to the support group, because all these people are saying, “It’s the luckiest thing. Now I have an opportunity to think about my life.” And I think you should think about your life anyway. I didn’t understand what I was supposed to do with this “experience,” and what does this mean for me? Finally I just got to a place where I just thought, “Well, I’m not going to wake up with some enlightened idea, but I’m going to see how my life unfolds in a different way now.” And that just requires a sort of different kind of self-consciousness and patience.

Although a dominant response to breast cancer is to try to reassert predictability and control, in Marge’s case, illness produced the opposite—an awareness of the need to accept contingency and change.
Even while waiting to see what life would bring, however, Marge had to make a major career decision. Before she entered graduate school, her “backup plan” was public school teaching. Although she finally finished her dissertation the year after treatment and began writing the book she would need for a tenure-track job, she also obtained a teaching credential. By the time we interviewed her, Marge had been teaching high school history for three years while applying for assistant professor positions. She realized the choice might not be hers to make. Academic jobs are notoriously hard to find, and, although she had been selected as a finalist for several, she had yet to receive an offer. Nevertheless, she wanted to determine her own direction.

Excerpt 3: Rose Jensen & Chemo Brain

Although Rose Jensen used to work as an engineer, she is now an office manager. Interviewed during two successive lunch hours, she began by explaining why she has a job far beneath her ambitions and qualifications:

I went from someone who kept phenomenal amounts of very sophisticated, concrete data in my head to someone who can’t get out of the house in the morning without making a list. When I was diagnosed I was the project manager for a twenty-four-million-dollar government project retrofitting military aircraft. I had thousands of engineering drawings and concepts in my head. I had names and phone numbers, figures—I had a mind like a steel trap. . . . I’m still probably more efficient than the average fool, but I know that I’m different, which is one of the reasons that I’m working here and not in a more responsible position. . . . This is a much less demanding job. I don’t need to have the kind of technical expertise that I did in that position. I have the earning potential that’s about twenty-five to thirty thousand dollars less. . . . And I have friends who have MBAs from UCLA like I do who say, “You could get a so much better job. You could do anything. You don’t have to have a job at this salary. You’re earning nothing.” And I’m thinking, “You know what? I’m really grateful to be earning anything at this point.”

Given the type of work Rose did, the effects of “chemobrain” were especially devastating.

Her life started to unravel soon after her breast cancer diagnosis, when she quit her government job and claimed Social Security Disability Insurance. As a result, she noted, “our earning potential as a family went down so much we had to give up our home and move into a much more modest home. Not that we were in a mansion or anything. We started ratcheting down. And it was really hard on the girls. They were four and eight at the time.” Medical bills compounded her financial difficulties. Although private insurance covered some of her treatment, her plan’s high deductibles and copayments left her responsible for a significant share.

Her first foray back into the work world, in the midst of treatment, demonstrated how altered she was. Changes she could ignore at home became starkly apparent when she spent the day in an office:

My neighbor, who is a consultant, used to ask me to help her, [and] because I wasn’t working, she said, “Why don’t you work in my office and, you know, see how you’re doing?” And at the end of the day she’d say, “You know, Rose, you’re not the person you used to be. If you don’t write things down, you forget what I asked you to do, and you never used to do that.” And, after weeks of forgetting things, she finally said, “You know I love you dearly, . . . but I can’t ask you to do things that I used to be able to ask you and expect them to be done.”

When chemotherapy ended and Rose was ready to work full-time, she found refuge in a job at an Internet company with relatively few intellectual demands and flexible hours:

They would allow me to come and leave when I needed as long as I put in eight hours, because many of the people were telecommuting from their homes, which were all over. . . . And there was a couch there, and since I was the only one there, the attitude of one of the partners was, “If you need to lie down, fine. Just as long as you do the work, you do it well, and you’re there for when we need you.” And those were the parameters he set, and that’s what I did.

Excerpt 2: A Little Help From Your Friends

[W]e also heard many examples of intimates and friends who greatly exceeded expectations. One survivor cried when she talked about her husband: “His mom had cancer, and she died before he and I met, and I was so afraid he would leave me. But he didn’t at all! No, he was just the opposite. He wouldn’t leave! I’m OK, leave me alone. Just the love that he has, it’s just incredible.” Because American society exalts the value of self-sufficiency, sick people often hesitate to ask for help. By reframing dependency, Tessa McKnight was able to find unanticipated pleasure in the care her friends bestowed:

At first when I went to chemo treatments, they said, “Bring somebody with you because you don’t know how you’re going to feel.” They didn’t particularly want you driving home alone afterwards. And I kept thinking, “I don’t want to burden any of my friends with that.” But one of the nurses in my oncologist’s office, I told her that. I said, “I just don’t want to burden my friends with having to go through this.” And she said, “Let me tell you something. You’re doing them a favor by asking them, because you make them feel important and wanted.” So I had eight treatments, and I got eight friends. We had them lined up. And it turned out afterwards I felt really good. They gave you enough drugs so that you’re in “lala land.” So we either went shopping or out to lunch. We had a lovely day. So when she told me this, and I saw the reaction, I knew it wasn’t a burden to them.

Support also occasionally came from unexpected sources. When a woman in a clerical job took five months of leave without pay to undergo treatment, her colleagues surprised her by donating their vacation time. Tessa received help from strangers:

I called a lot of the credit card people that I owed money to, and they wanted money now. And I’d call them and I told my story: “I have breast cancer. I’m going through chemo. I don’t have money. I want to pay you, but I can’t pay you the whole thing. Can I do a settlement with you?” So I actually had a lot of conversations with different people and was able to settle accounts. I only had to pay like 50 percent of what I owed them. And you know, that was a thing I learned from this whole thing. There’s people out there, it’s not just big corporations and stuff. And if you just start talking to people, tell them what your situation is, then they can always bend rules or whatever. So that was good.