Books

I knew nothing about breast cancer when I got my diagnosis. During the visit when she told me I had cancer, my surgeon asked me what I wanted to do. It was like multiple choices, and went like this:
Lumpectomy or mastectomy? I said mastectomy.

One side or both? I said both.

Reconstruction or not? I said it depended on my insurance.

She said that insurance companies are now required to pay for reconstruction. I said, okay, reconstruction.

I ended up doing none of those things.

I didn’t know enough to know what else I should ask the doctor during that appointment. Or how to answer those questions about what I was going to do. I was still stunned from the diagnosis, and as I was saying I would have a mastectomy, I knew I didn’t know enough to make a decision. I had less than two weeks to try to get enough information to make a more informed decision. Where to turn?

My next appointment that day was with an oncologist at Rocky Mountain Cancer Centers. I took someone with me who helped me remember what questions I thought I should ask. She also wrote down all of the answers. That was a good thing because I don’t remember much of what I asked or she answered.

I left that day with a bag full of information. Rocky Mountain Cancer Centers gave me pamphlets and a book I would use to hold my medical records and other information. Things I got that day that were the most helpful to me were the bag to put things in, a book to keep medical records, business cards of doctors, appointment calendars, etc. And one of the pamphlets that gave me very clear information about my diagnosis.

Throughout this time I read many things that helped me understand the diagnosis, what the doctors were talking about when they gave me my treatment options, help making decisions about treatment, and understanding what I was going through as a new cancer patient. I will list on this page some of the important books and other resources I have used.

Breast Cancer Journal: A Century of Petals by Juliet Wittman

 
A good omen for me – when I went for my first visit to the radiation treatment center, the doctor I saw that day had been the author’s oncologist! He was also filling in for my regular radiation oncologist on my last visit, when I was able to joke about him being famous. He was pleased that I had heard about him and read the book, but he was also humble — the nurses had no idea about the book until I told them that day.

I found this book at a hospitals’ Complimentary and Integrative Therapy program when I was in the city having radiation treatment. It was the first book I read on breast cancer from a personal experience perspective. The author detailed her experiences, reactions, and determination to take charge of her treatment, from her diagnosis through chemotherapy and radiation. It was important for me at the time to learn how another woman handled the diagnosis, made decisions, and went through treatment while I was still processing these things for myself.

Dancing in Limbo: Making Sense of Life After Cancer by Glenna Halvorson-Boyd and Lisa K. Hunter

The author’s real-life experiences of surviving cancer – telling what life is like after the whirlwind of doctors’ visits and treatment comes to an end.
I knew my life would never be what it was before — my previous “normal.” But I was having a hard time telling what my new “normal” was going to be. I called my local small town hospital and those in neighboring towns and found out there were no support groups. If there were, I would have gone, at least for a while, to hear how others felt about this post-treatment period and what they did. Then I remembered that the social worker at my oncologist’s office had given me her card and told me I could call her any time. I called and asked her how to find a group or individual to talk to and she gave me a calendar of events (in the city) but recommended that I get this book.

What I learned from this book is that what I was going through was, once again, very common. The survivors in this book talk about re-creating their lives with meaning and purpose, as they confront a myriad of emotions. The time is filled with ups and downs and if there is one thing that’s certain it’s change. The book tells us how others have learned to live with uncertainty, what to do about fears of recurrence and the wisdom of those worries, hope, grief, loss and courage.
I have been determined that I will not go through this experience with cancer without learning something from it. I found myself and everything I was going through in this book, as well as some things I haven’t gone through (yet). The book discusses expectations – ours and others, the craving for certainty and the need to control, and giving up the illusion of control, along with a lot of other things, and learning to be okay with that.
When I got very frustrated, I would put on my tennis shoes and walk out the back door and go storming down a gravel country road. I always pick up a small rock to carry with me on my walks to ground me, to bring back and put in a jar to count the walks and sometimes remind me of the experience. I usually choose something smooth and soothing that I can rub as I walk. This day I picked up two larger rocks. One of them was course and jagged and tore into my hand if I held it too tightly. The other was plain and ugly and heavier than it looked like it ought to be.
I grasped both tightly and counted my breath and walked 3/4 of a mile and turned into a center pivot road and headed into a cornfield. I walked to the well and stopped for a while, still holding the rocks. Instead of being soothing, they were becoming a burden. I decided to name them. The jagged one became my need for control. It was hurting my hand, and would make it bleed if I grabbed any harder. I called the ugly heavy rock in my other hand the illusion of control.
I rested and then headed back to the road. I began to loosen my grip on the jagged rock, and after reaching the road, I finally decided I’d had enough of it and I stopped and flung it as far as I could, then felt the relief in that arm from letting go. I kept the other one — the illusion that I ever had any control in the first place. I wasn’t quite ready to let it go. I wasn’t ready to leave everything I was clinging to on this one walk.
I kept thinking that I would just drop the rock some time before I reached my house, but when I got to my back step, I still had it. So I set it down on the cement porch outside the back door. It was winter, and we had cold winds and a little snow, not much. When I would leave the house in the morning to go to work, there was that darned illusion of control, sitting there as a reminder. One day when I left the house I thought it seemed smaller and I took a closer look. I discovered it had turned into not-a-rock. It was no longer a timeless, immutable object. It was a something man-made and modern. Like a piece of cement.
Every day when left my home and returned to it from work, I checked the size of that Illusion of Control, and every day it grew smaller. It was melting, like the bad witch in the Wizard of Oz. I started looking forward each day to seeing it dissolve. One day I got up and it was the size of a pea. The next morning it was gone. There was nothing left on the step but a dab of mud. The next day, it was dust, and the wind came up and blew it away.

Patient No More: The Politics of Breast Cancer by Sharon Batt

Review excerpted from Breast Cancer Action

. . . .Batt manages to interweave a moving personal account of her own battle with breast cancer throughout this compelling critique of the breast cancer industry and drives it all with a bright, fastpaced journalistic style that is often as gripping as a detective novel.

The book is organized around five major sections. 1) Thrown, an account of Batt’s diagnosis, 2) Mapping the Grey Zones, a penetrating look at treatment, from surgery to alternative therapies 3) Filters, a biting analysis of cancer charities and media coverage of the disease, 4) From Silence to Language and Action, the story of Batt’s movement into advocacy, inspired by peptalks from BCA’s own Elenore Pred and Linda Reyes during the early 1990s, and 5) Brugge, a summary of the recent conference whose aim was to “challenge dogma and redirect research efforts along more fruitful lines.”

Batt’s examination of the American Cancer Society’s backroom relationship with the National Cancer Institute and its attitude toward women is truly illuminating. Begun early in the century by doctors who wanted to challenge the popular pessimism about cancer, ACS sponsors recruited influential people to advance an optimistic message of hope, even though they were well aware they hadn’t a clue how to cure most types of cancer. The obsession with appearance has continued throughout the century. One Reach to Recovery volunteer, for example, was forbidden to visit patients without her prosthesis because, “We like our volunteers to look normal.”

. . . . Batt writes compellingly about “the institutionalization of our problem,” in which the system designed to control cancer really controls the woman. “We continue to feel that others are doing things to us rather than for us. When I decided to speak out publicly, I felt exhilarated…engaged in a personal, meaningful struggle.”

Throughout the book, Batt makes a powerful point: The cure for breast cancer is political activism. – Review from Breast Cancer Action

Breast Cancer Journal: Walking with the ghosts of my grandmothers by Hollis Sigler

Hollis Sigler was a visual artist who created a body of work called, Breast Cancer Journal: Walking with the ghosts of my grandmothers. In 1985, she was diagnosed with breast cancer and had a mastectomy, chemotherapy, and radiation treatment. At that time, her disease was a much more private concern and she got on with her life, “hoping that she would be among those who had experienced a sobering confrontation with cancer, one that for the most part was resolved.”
 In 1992, the cancer was found in her bones, and “she got angry, and then she got busy. Her frustrations with the confusing and meager flow of sometimes contradictory clinical information, with the lack of outreach resources, with the sense of being isolated with a potentially terminal disease while simultaneously certain that everywhere there were thousands, no millions, of women in precisely her position,” led to her activism and to the journal.

She began publicly acknowledging her cancer by painting to express not just her own experience, but her family history, and as political consciousness raising. Both her mother and grandmother had breast cancer. Her paintings express the challenge of the disease, “all its moments of despair, revelation poignancy, sorrow, exhilaration, agony, hope, dejection, frustration, and tenderness,” James Yood wrote in one of the introductions. The other introduction was written by Susan M. Love, M.D.

Sigler came of intellectual and artistic age in the 1970s and she understood those aspects of feminism that led to publications like Our Bodies, Ourselves. “She knew that women, one by one, often beginning in isolation, had created new networks of communication to provide exchanges of information that would directly address critical issues in women’s lives, that would combat those structures, intended or unintended, that had hitherto frustrated women’s efforts to inform themselves more fully.”

Sigler also had experience with art activism through her role in the Artemisia Gallery, a feminist cooperative in Chicago the 1970s.

Sigler describes the creative process throughout the series, and how it evolved as she gained some emotional distance. The first works directly related her feelings and experiences with the diagnosis, and later became more reflective. One group of drawings was done almost immediately after readings of Tibetan Buddhists, specifically The Tibetan Book of Living and Dying. Sigler said that that book, along with The Cancer Journals of Audre Lorde, gave her perspective about her attitude toward permanence.

Sigler was featured in “Paint Me a Future,” a documentary film about art therapy produced by Dr. David Kaminisky, Palm Springs, CA. Her breast cancer journal was published by Hudson Hills in 1999.

Sigler was born in 1948 in Gary, Indiana and died March 29, 2001, in Prairie View, Illinois. She received the distinguished artist award for lifetime achievement from the College Art Association just one month before she died.