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Archive for February, 2009

hollissiglerHollis 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.

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Journal collection

Journal collection

While going through my sketchbooks, I’m running across random journal entries that are expressions of some of the more difficult and frustrating times I had during what I now think of as The Year I Spent Having Breast Cancer.  They were too immediate and personal when I wrote them to include in this online journal. Now I see that this story isn’t complete without at least some of them, so I’ve started another page called The Parts I Left Out.  I am going to add entries as I run across them, so it won’t be in chronological order for the time being.

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http://www.msnbc.msn.com/id/29160015/

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bwop1Just before my diagnosis and for some time during my surgery and treatment, I was having nightmares, what I later decided were “cancer dreams.” I’ve written here about looking for someone to help me process the strong emotional reactions I had to learning I had cancer and dealing with it. What I intuitively felt I needed was dream work therapy or art therapy. The social worker at my oncologist’s office told me over the phone to watch for upcoming art therapy sessions on their online calendar. Although they would be in in the city, I felt such an urgent need for them that I decided I would travel to attend. But I never saw them listed, and I’ve never attended any. I wish I could have found a way to do this at the time.

One day I was looking for online resources for breast cancer patients and was startled to see a full color photo of a cancer cell. It reminded me of drawings in my journal that I had done before my diagnosis. I got out the journal and discovered that I had done several pen and ink drawings that, in retrospect, looked like complex cells that had broken out of their precise patterns and boundaries and become chaotic.

Here is an article about a study that determined that women having radiation treatment for breast cancer were helped by art therapy:

Art therapy ups breast cancer patients’ well-being
Thu Feb 12, 2009

NEW YORK (Reuters Health) – Women having radiation treatment for breast cancer experienced lasting improvements in mental and physical health and quality of life after participating in five sessions of art therapy, Swedish researchers report.

The findings “strongly support art therapy as a powerful tool in rehabilitation of patients with breast cancer and, presumably, also in the care of patients with other types of cancer,” Dr. Jack Lindh of Umea University, Umea, Sweden, and colleagues conclude in the European Journal of Cancer Care.

From my sketchbook

From my sketchbook

Women face major stresses after a diagnosis of breast cancer and art therapy could offer a way for women to express and “process” their emotions, the researchers say, thus improving their quality of life.

To investigate, they randomly assigned 41 breast cancer patients receiving radiation treatment to five once-a-week, hour-long sessions of art therapy or to a control group who didn’t receive art therapy. Study participants completed surveys addressing their quality of life and self-image before beginning radiation, two months after radiation treatment began, and six months after the beginning of treatment.

A trained art therapist led each session, in which women were given a wide variety of art materials. Goals of the intervention were to offer time and space for expression and reflection; give support in the process of restoring body image; and reduce stress.

By six months, the researchers found, women who had participated in art therapy showed significant improvements in their overall quality of life, general health, physical health, and psychological health, while the control group only showed improvements in psychological health. The art therapy group also showed specific improvements in their body image, perspectives on the future, and radiation therapy side effects.

In previous studies, Lindh’s team demonstrated improved coping skills and better ability to deal with others’ demands in the breast cancer patients who did art therapy.

Art therapy may have improved the women’s quality of life by helping them to maintain a positive identity, to deal with pain, and to feel control over their lives, the researchers say.

“The results of our studies suggest that the women, through image-making and reflection on their images, were able to give legitimacy to their own interpretations and experiences,” as well as to “recognize and question” limits and boundaries imposed by traditional gender roles, they conclude.

SOURCE: European Journal of Cancer Care, January 2009.

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http://www.youtube.com/watch?v=3s9_UrVtc6c

Please watch this video to understand how the symptoms of this type of breast cancer are different from the tumor “lumps” we have been taught to look for, and how doctors sometimes fail to diagnose this until it is untreatable.

Symptoms of Inflammatory Breast Cancer include itching, which I’ve posted about before.

http://www.mayoclinic.com/health/inflammatory-breast-cancer/DS00632/DSECTION=symptoms

Symptoms

Despite its name, inflammatory breast cancer does not cause inflammation the way an infection does. Signs and symptoms include:

  • Rapid change in the appearance of one breast, over the course of days or weeks
  • Thickness, heaviness or visible enlargement of one breast
  • Discoloration, giving the breast a red, purple, pink or bruised appearance
  • Unusual warmth of the affected breast
  • Dimpling or ridges on the skin of the affected breast, similar to an orange peel
  • Itching
  • Tenderness, pain or aching
  • Enlarged lymph nodes under the arm, above the collarbone or below the collarbone
  • Flattening or turning inward of the nipple
  • Swollen or crusted skin on the nipple
  • Change in color of the skin around the nipple (areola)

Other conditions have symptoms resembling those of inflammatory breast cancer. A breast infection (mastitis) also causes redness, swelling and pain, but breast infections usually develop during breast-feeding. With an infection, you’re likely to have a fever, which is unusual (but not unheard of) in inflammatory breast cancer.

Breast surgery or radiation therapy may block the lymphatic vessels in breast skin, temporarily making the breast swell and become discolored. When caused by surgery or radiation treatments, however, these changes gradually subside.

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Tired tonight. A mental fatigue. Tired out and dismayed by the challenges cancer patients are faced with in addition to dealing with their disease.

My friend has stage IV prostate cancer and has been at the same hospital since his diagnosis. Even though it serves the indigent and he could have gone elsewhere after he got on Medicare, he has chosen to stay because he likes his doctor; he likes the nurses in the infusion unit. I think there are other reasons, too. Why would someone dealing with this disease want to think about changing?

Long calls today to the hospital social worker, family members, advocacy organizations, service agencies, more visits with family members to catch each other up on the news and to give the primary caretaker some encouragement. He’s tired, too. He says he’s been tired for a month. He’s a single parent and taking calls at work from Home and Community Based Services discussing eligibility for his dad, calls to the social worker about the reasons his care has been interrupted at this late date without an explanation or help to transition to another medical provider.

The patient’s symptoms make it difficult for him to navigate the systems involved – health care, government Medicare, insurance companies. The appointments scheduled this month included one for a transfusion to address the severe anemia, one for an infusion of zometa to address the bone loss secondary to the disease and the treatment, a Coumadin check, and an appointment with the oncologist to see whether, after 30 days, the new medication was working, as the chemotherapy infusions were stopped when they quit working. He went to the appointment with the oncologist and a woman whose name he didn’t know, and whose position at the hospital he wasn’t aware of came to him in the waiting room and told him in front of other patients that he had to leave and he couldn’t come back. And, he thought she also told him he couldn’t talk to anyone about it.

That was one week ago tomorrow. Today, we were finally able to learn that the problem is related to the Medicare and supplemental insurance and may be able to be fixed tomorrow – but it also may not.

Needless to say, the way it was handled was completely outrageous. I spent time today trying to locate an advocacy organization that could help find the problem and work through to a solution. I went online to the American Cancer Society web site, entered the zip code, and learned there was a “Patient Navigator” in the patient’s local ACS office, and when I called and explained what happened, she gave me a toll free number for a national nonprofit organization. So what a patient navigator does, or what a patient advocate is, or how a cancer patient whose care has been suspended at a critical stage can find a local office or person to help him is information that does not come easily when it is needed.

My friend said it was okay for me to call, and I went through four recorded menus until I reached what I thought would be the right selection. Seventeen-and-a-half minutes later, after the most recent recorded assurance that my call was very important, the background music was no longer playing, and I wasn’t sure I was still connected. I waited a while longer, heard no more music, never got another recorded assurance I was on hold, and decided I had been disconnected. The patient himself would have never made it through the recorded menus.

But we were able to talk with the hospital social worker this afternoon and she has a meeting scheduled for tomorrow to try to get the problem resolved. She’s not sure she can do it, but she will try. The Coumadin clinic appointment will have come and gone. It will be 7 weeks since the Coumadin levels were checked. We don’t know when he will find out whether the new medicine is working, or what he will do next if it is not.

Someone who needs two pints of blood, whose blood pressure is very low, who is in pain and having difficulty walking, will show up with his paperwork to see if a bureaucracy can untie its knots so he can, he hopes, resume treatment. And monitoring. Why wasn’t this handled last week? Why was this cancer patient exposed not just to another lapse in treatment, but to a week (so far) of anxiety about the reason he couldn’t see his doctors and get his treatment, and whether he would have to start now to find other doctors?

I am still just shaking my head, and I’m exhausted, and I’m not the patient. This is completely outrageous.

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Living Beyond Breast Cancer has a new Guide to Understanding Treatment Decisions that will help newly diagnosed breast cancer patients interpret their test results and create an individualized plan for care. The brochure explores understanding the pathology report and the results of genomic tests, paying for tests, working with treatment teams and making decisions about surgery, chemotherapy, radiation and other adjuvant treatments.

Visit their web site to download or order a free copy.
PDF copy of the report

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