'Living' Newsletter - Issue 9, Spring/Summer 2003

Willow Breast Cancer Support & Resource Services holds the copyright on all material in this publication unless otherwise indicated. Permission is granted to display, copy and distribute Willow materials for personal, non-commercial use only, provided you do not modify the materials and do acknowledge the source of the material by crediting Willow Breast Cancer Support & Resource Services
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ON THE VERGE OF DIS/ABILITY
by Amina Daanish
©2003 Amina Daanish

It was not that long ago, perhaps three months, four months ago that I noticed women's hats. Or skirts. Or shoes. Now I stare at their canes. I am very new at using a cane. I hold it wrong. I hold it in my right arm and swing it to match my gait. But I forget to swing my left arm. The cane hobbles ahead of me. It limps behind me. I'm finding that using a cane properly is even harder than learning to ice-skate when you are in your late 20s.

I use the cane only in public, partly to signal to people that I am not as able-bodied as I look. To warn teenagers with heavy knapsacks not to crash into me, because if I trip and fall, I might fracture a hip, and the hip won't mend easily. No, I am not 88 and I don't have osteoporosis. I am fifty-something and I have recently been told that the breast cancer of 11 years ago has spread or metastasized to the bone. I've already had radiation treatments for fractured ribs and for a hipbone which was on the verge of fracture.

On the first whole body bone scan, ordered by my doctor, the x-ray technician wrote with authority that there was "extensive metastatic disease". The American Cancer Society's (ACS) web page tells me that fractures are difficult to heal if you have bone mets. The x-rays which showed the many tumours in the bones of my legs, hips and thighs suggested to me that each of these tumors is a potential site for a painful fracture. And therefore, throughout winter, I used a cane, so as not to have any broken limbs.

On the streetcar and the subway I stare at men and women using canes. There seems to be a whole range of canes. Mine is wooden, borrowed from a friend and the wrong size for me. It's too long, too tall. It has a hook on which I rest my arm and I curl my fingers around it. The man sitting in front of me on the bus has a metal one. It is ugly but more compact than mine: I see him collapse it into a small bundle and put it away in his bag, just like the collapsible umbrellas which fit into your handbag. Cool, I think. I must get one of those.

Instead of admiring women's coats and hats and skirts like I used to do, I now notice their walkers. Like canes, walkers come in different styles. Some are hand propelled, others are electric. I notice that there also seem to be a number of people in wheelchairs. I live in a part of Toronto where there are many housing co-ops. Hence, people with dis/abilities can afford to live here, as many of the co-ops offer subsidies for people with disabilities. It's no secret that if a person has a disability, they probably live in poverty. But why am I staring at wheelchairs and walkers when all I need is a cane? Because none of the many doctors and nurses who are involved in my care have so far been able to tell me how this disease progresses. I want to know: What will I be able to do, or not be able to do, in three months? In six months? In a year from today? Will I need a walker soon? Will I ever need a wheelchair? They tell me that each cancer is unique, and each person with bone mets reacts differently to the treatments. So I don't know whether I will need only a cane three months hence, or whether I will need a walker, or maybe even a wheelchair.

I am embarrassed to admit even to myself how l little I knew about women living with disabilities. As I teach Women's Studies, I have read and used articles on disabilities, and we theorize disability in the classroom. I know for instance, that an Ontario woman with a disability has an average annual income of less than $10,000 and therefore, has to live in poverty. But I just assumed, or perhaps didn't give any thought to how a woman who uses a wheelchair in a public space moves around when she closes the apartment door behind her. I think my assumption was if she is in a wheelchair in a public space she must be in a wheelchair inside her house. But as soon as I enter my apartment, I hook my cane on the banister. When I climb the stairs from the living room on the main floor to my bedroom on the next floor, or down the same stairs from the bedroom to the living room and kitchen, I clutch the banisters. I move slowly from the kitchen into the living room and ease myself into the settee. The cane hangs along with the umbrella on the banister, except for when I venture out of the apartment.

I love rain, and never gave any thought to how it affects your life if you are using a cane. Today it is raining and I am wishing I had three hands. In one I have my cane, in the left one I have a large handbag and a cloth bag with lunch and medications. I have an umbrella but it remains inside my bag because I don't know how to hold up an umbrella without a third hand. I take the decision that the umbrella is less important than the cane. The umbrella might prevent me from catching cold. But not using the cane might result in a slip and trip and a fractured leg/thigh/hip.

What a relief that it is finally the end of winter. I have loved walking in the fresh snow. But this winter, throughout the many long months, I have been shuffling from my house to the bus stop and vice versa, and have been terrified of slipping on the frozen snow and being laid up for the rest of the winter. But the last snowfall of the season brought me new hope: the snow froze and I slipped right outside the co-op building where I live. Suddenly I was lying on the icy ground. I thought: How do I know if my hip is broken? I felt no pain, except for the embarrassment of being on the ground in front of a lot of people. A passerby helped me stand up. I stood up, thinking I might collapse. No. I was fine. I was not hurting anywhere. Dazed, I went home to try to understand what had happened. I think the medications I'm on, especially the Clodronate, have strengthened my bones so much that my bones are stronger now that they have been for many years.

That was quite a discovery! Next day, I ventured out without my cane and limped less! I realized I was limping more with the cane than without. Another discovery was that winter was far from over, and this would not be my last fall of this winter. But the falls hold no terror for me anymore. In fact, my friends who do not have bone mets are more scared of falling and fracturing a hip bone than I am. I feel invincible! Watch out, all you ice-skaters at City Hall who have not seen me for twenty-odd years. Here I come!

*This article may not be reproduced in any way except by written permission by the author.
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"SARS, CANCER & A DIFFERENT PERSPECTIVE"
by Bonnie Bassett-Spiers
©2003 Willow Breast Cancer Support & Resource Services

What I am about to share with you is going to sound bizarre but I have come to appreciate cancer for being a kinder, gentler disease in many respects. Kinder and gentler than what, you may ask? Kinder and gentler than SARS.

In no way am I disputing that for many, cancer is a harsh, painful and debilitating disease that can either lead to a slow and agonizing death or in some cases, a rapid deterioration. Either one of these scenarios can conjure up anxiety and panic for me. However, I have gained a different perspective on my disease due to the emergence of SARS.

I am a life-long Torontonian and have now experienced two outbreaks of SARS. I was in voluntary quarantine during the first outbreak just because I happened to be in the wrong place at the wrong time. While I was in quarantine back in late March-early April I had time to first become very anxious, and then as my isolation wound down, I had time to reflect on the horror that is SARS.

At first, I was very anxious because I did not feel that well at the time and just as every person living with cancer 'cancerizes' every symptom, I began to 'SARSize' every symptom as well.

As I calmed down I was finally able to realize how horrible a death this must have been (and still must be) for those who have died. Many became ill so fast that they didn't even realize what they were dealing with. And once they did, they were alone, isolated from their loved-one's, some of whom were also fighting for their lives in isolation. Even their health care providers could not provide a human touch or even a kind smile as they are shielded in their armor to protect their own lives.

Perhaps it is my ongoing pursuit of coming to terms with my cancer, but I began to consider that cancer may be kinder. Cancer is not contagious. One can have all their loved-one's with them and share warmth and love, skin to skin, cheek to cheek. One can be touched, stroked and kissed. One does not need to worry about infecting their family and friends. (Yet, many of us do agonize, I know, about leaving this legacy to their children.) One often has time to tidy up loose ends and to say 'goodbye' properly. One often has more control over how they want their final chapter to read. With SARS you do not!

SARS has gotten into my psyche and tapped into one of my greatest fears-dying alone. These days cancer almost seems tame in comparison to SARS. I know the enemy that is cancer and have learned to live with its yoke around my neck and hopefully, will have the time learn to accept its end stage. But this other beast is totally unknown and for me, at times, more frightening.
Just as the diagnosis of cancer tends to put life's every-day problems into perspective, so too has the emergence of SARS put my experience with cancer into perspective. And as the fear and confusion about these outbreaks calms down, these feelings have been replaced with extreme sadness and empathy for those who have suffered, who still suffer and to those who have lost loved-one's to this virus. My heart goes out to the health care workers who continue to put their lives on the line, and to Toronto, my hometown.

SARS has had an undeniable impact on me. It has helped me to step outside of myself and see my experience with cancer more clearly - as something that I think I can continue to live and cope with, whatever lies ahead. From this vantage point I guess I can conclude that SARS has been useful to me in a bizarre sort of way.

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FOR YOUR INTEREST

Theories of Metastasis are challenged: Two new studies are challenging the assumption that a primary tumor starts off benign and over time acquires mutations that lead to its capability to metastasize. These studies are indicating that some tumors may actually start out already programmed to spread rather than later in their development.

One study, was led by Rene Bernards, Ph.D. and published in December 2002 in the New England Journal of Medicine. It indicates that "some [tumors] are pre-ordained to spread and some will have a favorable combination of initiating events making them less likely to spread", states Bernards. A separate study, led by Todd Golub, M.D., and published in December 2002 in Nature Genetics, supports Bernards' premise that a tumor carries an inherent ability to metastasize from the beginning, and it is not just a few cells with this ability but all tumor cells.

The outcome of this research could be perceived as very discouraging. However, in the clinical setting, this could lead to new technologies that could predict which cancers are likely to metastasize and therefore, only need to aggressively treat those who need it most. I also believe it may comfort some of those people who blame themselves for their recurrences because it would indicate that they obviously had no control over something that may have been pre-ordained.
(Journal of the National Cancer Institute, Vol. 95. No. 5. March 5, 2003, p.350-351)

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BOOKS

Menya: An End of Life Story by Morris Wolfe
Toronto, Grubstreet Books, 2003
This is a beautiful, bittersweet book, written by a father about his daughter's last months.

Menya Wolfe, a frequent user of Willow's services, died in the fall of 2000 after a four and a half year struggle with breast cancer.  This is his story of this tragic time yet also about the celebration of life and how hospice care was able to provide Menya with great kindness and comfort.

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More Books!!!
Fighting for Our Future: How Young Women Find Strength, Hope, and Courage While Taking Control of Breast Cancer by Beth Murphy (The McGraw-Hill Companies, 2003).
The 12th chapter of the book, entitled "I Just Try to Focus on the Now...", is devoted to the issue of recurrence and metastases. It is comprised of anecdotes of young women dealing with advanced breast cancer and information on coping, understanding recurrence and mets, treatment, quality of life, coping with limitations, making difficult decisions, taking charge and taking it one day at a time. This book speaks to the often unique issues of young women and therefore, also addresses the unique issues of young women with advanced breast cancer.

The Human Side of Cancer: Living with Hope, Coping with Uncertainty by Jimmie C. Holland, M.D. and Sheldon Lewis (HarperCollins Publishers, 2000).
This is a book about the "human effects" of cancer as opposed to the "physical effects". This book addresses the every day human issues that individuals and their families are dealing with that are often not addressed by oncologists. They are the psychological, social, existential or spiritual issues that people at any stage of cancer can relate to. Chapter 13, entitled "The Goal Is Control" addresses specifically recurrence or advancement of cancer and the challenge of how to live and carry on with a sense of hope.

After Breast Cancer: Answers to the Questions You're Afraid to Ask by Musa Mayer (O'Reilly & Associates, 2003).
Musa Mayer is an author, breast cancer advocate, contributing editor for MAMM Magazine and breast cancer survivor. She wrote this book to respond to the many questions she gets asked in public and in private. The book, although largely geared to the woman who has entered the post-treatment phase of early breast cancer, does also address facts and concerns about recurrence and metastases.

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UPCOMING EVENT!!
Eat to the Beat 2003 - 40 Women Chefs in Harmony
"Eat to the Beat" is the major fundraising event for Willow. It raises almost 1/3 of Willow's annual funds.
Now in its eighth incredible year, Eat to the Beat has become a perennial favorite for many. Over the years it has blossomed and grown into one of the most successful and popular Fall events in Toronto. Last year there were 47 chefs, over 800 guests and a phenomenal $231,000 was raised!
Attendees are able to sample gourmet foods prepared by many of Ontario's finest women chefs while sampling wine and beer from some of the province's leading wineries and breweries.
Date: Sept. 30, 2003
Time: 7:00 PM
Location: Roy Thomson Hall, 60 Simcoe Street, Toronto
Tickets: $135
For more info or to buy tickets, visit www.willow.org or call 416 778-5000