Archive for February, 2011

Legacies

02.20.2011

The most poignant notes I get about my blog are from women undergoing treatment who feel alone. They may be surrounded by family and caring friends, but they live in the alternative universe that is CancerLand. When they resonate with something I’ve written, they describe it as a “relief.”

Lately I’ve been thinking about who I am now that I am on the other side of the Big Treatment. It would be easy for me to embrace the role of the Triumphant Survivor who kicked cancer to the curb, now runs long distances, and by year’s end should have a gravity-defying tatas. It’s tempting to take credit for having won my “battle,” to take this feat as a confirmation of my strength of character, and face the world with a renewed sense of purpose.

It’s tempting.

But I can’t.

It’s not because I am so modest. Cancer is a trial that tests one’s character, and I believe I met the challenge fairly well.

I can’t because I know that my character is not why I have survived. As my regular readers know, I lost my stepbrother to cancer less than two years before I was diagnosed. I am aware of the courage, love, and humor he showed during his treatment. In fact, there were times during my treatment that I compared myself to him and keenly felt the ways that I fell short of his example.

And, for me, the linking of character to triumph is where the stories we tell about survivorship unravel.

Despite the superhero persona I created for my blog, I didn’t actually fight cancer. The truth is, I got treated. I was fortunate enough to have found my tumor before it was Stage IV –– and even then, just barely. A targeted treatment existed that hadn’t existed only a decade earlier, giving me a somewhat hopeful prognosis. I was lucky that the specific pathology of my tumor responded to the treatment, which is not always the case. I am grateful that even when my oncologist had to reduce my chemo doses because of all of the horrible side effects I experienced, I still came out with a good pathology report at the end of my treatment.

I can’t link my “good outcome” to any attribute of my self because I bear the legacy of my brother. His story shapes my own. He got treated too. In fact, he spent the last 20 months of his life in treatment. But he drew the short straw in this cancer game. His cancer was rare, and it was found after it was metastatic.

The dark and gray spots were the tumors on his bones.


It actually would be foolish of me to link my triumph to my character, because I know that I am not out of the woods. I said a few paragraphs back that I have survived. The truth is that I have survived so far. When I asked my doctor if I am cancer-free, she told me that she can’t say that until October 2012, three years after my date of diagnosis. Right now I have a 20% chance of having a recurrence, at which point, I too would have metastatic disease. If I embrace the idea that I have survived so far because of my outstanding character, where will that leave me if it comes back?

The Triumphant Survivor story is harder to embrace if we acknowledge it’s conditional on a yet-to-be-determined outcome. Nonetheless, its very pervasiveness makes it hard to acknowledge that reality. I realized that back when I started this blog, when I was first diagnosed.

But the story persists, relentlessly. It’s seductive in part because it puts us at the locus of control in an out-of-control situation.

Here’s another example. Check out this brochure from my local Boobless Lady Supply Shop.

Do you see their slogan? It says “From diagnosis to remission.”

In other words, if you have metastatic disease, this is not the place for you. In fact, I’m not sure where you are supposed to go.

I have no false hope that my good attitude will keep me on the right side of that 20% statistic my oncologist gave me. And ultimately, we need to all do a better job understanding that metastatic disease is a possibility for all of us.

Diagnosis to remission is not the only, inevitable trajectory.

Diagnosis to remission is not “earned” by those with a good attitude.

Women suffer because of these beliefs. Women who experience post-treatment depression have their pain compounded by messages that they are surviving incorrectly. The women who write me to tell me of the relief that they feel reading my blog are glad to not feel blamed for doing cancer “the wrong way.”

Dare I say, women die because of these beliefs. We edit out the reality of metastatic disease because it doesn’t fit this story. It is viewed as hopeless. Then, perhaps as a consequence, we don’t allocate research funds to it. But we must deal with it. One out of five of the women in my situation will end up there.

My friend Anna, who blogs at The Cancer Culture Chronicles, has called our attention to the tremendous underfunding of research into treatments for metastatic disease. She’s done an analysis on how the Susan Komen organization, who has actually trademarked the phrase “for the cure,” spends a surprisingly small portion of their funds on research.

My call is for truth in talking about treatment and survivorship. Treatment sometimes works and sometimes doesn’t. While attitude may influence compliance, it does not otherwise influence outcome. The right treatment for the disease is what counts.

Staying positive may have a place for some women, and I can respect that as a coping strategy. I use it myself much of the time. (Check out some of the comments on my last post for some examples of women who dealt that way.) I think it’s disappointing to come to terms with the fact that positivity is not going to determine the outcome.

So what’s the goal? Where’s the map? How can we understand survivorship?

I can’t speak for everybody. I can only speak for myself. I will tell you that the women I admire most are the ones who flourish not because of their good attitude, but because of their unflinching honesty.

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Miss Pink Elegance

02.13.2011

Recently, a story about an upcoming fundraiser appeared in a Pennsylvania newspaper.

A local Susan G Komen for the Cure Foundation® affiliate is hosting a fashion show, luncheon, and auction fundraiser later this month.  In addition, they are crowning the first “Miss Pink Elegance.”  Event co-chair Joanne Arduino explains:

This year marks the first crowning of “Miss Pink Elegance,” an honor that will be awarded to the guest wearing the best pink outfit…Guests can come in elegantly or outrageously in pink,” she said. “The winner will be crowned Miss Pink Elegance the First. They’ll get a sash, a crown and a dozen pink roses. We’ll have someone who sings ‘Miss Pink Elegance.’ And she’ll strut down the runway.”‘

On first glance, the triteness of a fashion show and subsequent crowning seems an affront to the seriousness of breast cancer.  If that’s all there was to it, this would be a simple matter of taste.  Unfortunately, there’s more to it.

Sarah Horton, author of Being Sarah had some insightful thoughts about fashion shows in her book.  She references a blogger, JaneRA, who wrote about the issue of restoring femininity post-breast cancer and about Audre Lorde’s insight into the concerted effort to hide the physical impact of the disease.

“… [I]t’s the message behind this that upsets some of us. Jane refers to the central London offices of a national breast cancer charity, and the photos on the walls of the previous models, all smiling…you can’t miss the point that ‘ultra feminine, attractive, youthful and happy’ is how you’re supposed to look after breast cancer…  Audre Lorde calls this a ‘conspiracy on the part of Cancer Inc’ for women to appear ‘no different from before’ and show the world that ‘nothing has happened to challenge her’.” (pg 239)

A lack of gravitas shown by this and many other pink ribbon fundraisers is only the tip of the pink iceberg.  Fashion shows, parades and other celebrations are popular because people want to feel good, to believe that they can both have fun and make a difference.  Kitschy fundraisers become popular and propagate.  Eventually the dominant message becomes that breast cancer is a playful celebration; that women can not only be restored to a societal image of beauty, but that they can be better than before.  In this instance, the best assimilated, most fully restored person who receives the most votes will receive a sapphire crown, a pink sash and a happy serenade.

Harm is done to people who don’t fit this mold, who on top of having cancer receive blame for not surviving correctly.  For many, the truth of breast cancer is not pretty.  There are women who can’t or don’t have their bodies restored to their former glory.  There are women who suffer greatly from side effects of the treatment, physically and psychologically.  There are women, many women, who do not survive this disease at all.  In fact, anyone who has received a breast cancer diagnosis is at risk for recurrence, for a metastatic cancer that won’t be cured.  And there are women who are uncomfortable, for a myriad of reasons, with the mantle of triumphant survivorship.  For many women the words “guilt, frustration and anger” represent breast cancer; not “pink, fun and elegance.”

Where do these women go for support?  Who listens to them? Consider the words of Kathi from The Accidental Amazon.

“Fashion statements aside, once I became a person with breast cancer, it didn’t take long at all for me to develop a very low tolerance for all things pink. The sheer ubiquity of pink as the symbol of the fight against breast cancer is overwhelming. And one of the things that you discover… is that everyone … seems to assume that you are now the local poster chick…everyone assumes that you have the interest, time, energy, inclination and funds to contribute to or participate in every bleeping event, cause, or group that is even remotely associated with helping everyone else not end up like you.”

Kathi’s realities of living with breast cancer do not fit in a festive environment.  This “Poster Chick” is supposed to fight cheerfully for herself and for everyone else.  Gayle Sulik explains in Pink Ribbon Blues.

“Telling an authentic story about an illness that is heavily laden with cultural expectations about femininity, normalcy, and triumphant survivorship requires a new way of thinking and speaking.  Falling on the margins of the cultural framework, these kinds of stories can be threatening and hard to hear. (p. 338)”

Many of us, the well-intentioned and generous people who have been affected directly or indirectly by breast cancer, want to think that all of the money we’ve spent, all the tears we’ve cried, all the pink we’ve worn has made the world a better place.  But few acknowledge the less-than-pink truth of breast cancer: the indignities of a disease that still kills, can happen to anyone and has no cure.  The number of people dying from this disease has barely budged in decades.

Until we change the narrative away from feather boas and pink roses, these petrifying facts won’t change.  JaneRA, the blogger quoted by Sarah above, died in 2009.  Audre Lord died in 1992.  In fact, the WHO says that 460,000 people died worldwide from breast cancer in 2008.  In Pink Ribbon Blues, Gayle Sulik states that despite more treatment given and more money spent, a woman “with invasive breast cancer has about the same chances of dying from the disease as she did 50 years ago.” (p. 159)

So where do we start?

Criticizing breast cancer fundraisers can be tricky.  After all, what works for one person may not work for another.  Empowering people’s authentic selves means making room for a diversity of opinions, but it also means speaking up fiercely against the agents of disempowerment.

Apart from the complexity of nuance, it opens you up to the risk of being labeled bitter, angry or plain ungrateful.   This recent blog post labels people who question the dominant system “anti-pink.”  Gayle Sulik, author of Pink Ribbon Blues, answers that claim.  “Anti-pink is a call to ‘think about pink’–to look at all of the out­comes of how we as a society are orga­nizing around the cause of breast cancer, the pos­i­tives and the neg­a­tives, so that we might recal­i­brate our actions to make the most of the pos­i­tives and min­imize the negatives.”

We need to make room for the darker shades of color palate.  We need to think about pink. Before being swept away by feel-good celebrations swathed in pink, consumers and philanthropists should ask themselves some basic questions.

-                Where is my money going?

-                What has the organization done to prevent or eliminate breast cancer?

-                Does this organization support people with breast cancer at all stages?

-                What is the organization’s mission and how well does it live up to it?

-                Does the organization use evidence to inform its actions?

-                Do I want to support this organization and its messages?

The answers to these questions might be uncomfortable and unpopular, but they are the only way to get to the truth and, ultimately, progress.

For more questions to ask, see Breast Cancer Action’s Think Before You Pink website.

Consider JaneRA’s final words in her posthumous post.

“[N]ot for you are the appearances in Fashion shows…airbrushing the reality of this disease into some designer must-have condition. You will decide on a harder more radical route … a movement will begin to challenge governments, and research scientists, the medics and the charities…

Winding forward to say 2050, I hear you talking to your grandchildren about the old days when breast cancer still killed, and generations of women died years too soon.”

Now we have a choice.  Will we put our heads in the pink sand and lull ourselves into believing that fashion shows are good enough, or will we stand up and demand real change?

This essay was created in collaboration with a group of writers and advocates who are deeply concerned about the lack of progress being made in the eradication of breast cancer.  We believe that it is time to look beyond the feel-good messages and demand real change.

You may reproduce this article, in its entirety.  You may not make changes to it and you must include this attribution and a link back to the blog that posted it.

We encourage you to spread the message and to take a stand.  Thank you for getting involved.

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A View From the Back of the Pack

02.07.2011

This past Sunday, I met up with a local running club. About fifty or so runners congregated at the park entrance. It was a crisp, clear day. The coach called our attention and announced the morning’s runs.

I listened attentively as he spoke. I’m just getting my running legs back, but I’m pursuing them with a vengeance. I asked my oncologist what I could do to help ensure that I am not one of the 20% of women in my situation who end up with metastatic cancer. She told me that I will hear a lot of unfounded advice, but from her point of view, the only two things that would influence my prognosis are keeping myself to my lowest healthy weight and exercising regularly.

So I signed up for two half marathons. The first one will exactly 4 months after my last treatment, one year after my last Big Chemo. The other will be right after my 40th birthday in April.

The coach described three runs for the morning, and now I had to choose. I had a dilemma, though. To train for my half, I needed the longer distance of the intermediate group. Because I have just started to get my mojo back, the beginning group’s pace suited me better.

The choice may seem obvious to some of you. Of course, I hear you say, I needed to go the distance with the intermediate group and settle into the back of the pack.

But that’s a big adjustment for me. I’m not used to traveling at the back of the pack.

I went with the intermediate group and started out the 8 mile run at too quick of a clip, chatting alongside another runner. After a half a mile, I realized that I couldn’t hang in.

“Sorry, I’m going to have to drop back,” I said.

In my former life, my pride would have spurred me on to push myself to meet his pace. But my body is fragile as it recovers. It must take precedence over my ego.

As I ran along, letting more and more runners pass me by, I meditated on the metaphor of this situation. Others look at me and see somebody who is fit. I have the gear and the form of an experienced runner. I am relatively young. My hair is long enough and my complexion rosy, so I no longer look the part of the cancer patient. People expect me to be a different kind of runner.

However my pace belies these expectations. My body knows the difference. My lungs bear the scars of the radiation. My heart is recovering from the 18 doses of Herceptin which caused it temporary damage.

It doesn’t matter what they think, I tell myself. I know how to do this. I know how to get in the rhythm of my own breath. It’s a hilly course, and I know how to steady my own exertion so that I climb with constant effort.

The run brings my reality into sharp focus. I am constantly facing choices like this, managing people’s expectations of me and my own limitations. Right now, on this course and in my life, I can expend my energy on distance or pace but not both at once.

I run at the end of the pack, but I am not alone. There is a woman in front of me. From the look of her physique and form, she is a newer runner. She often slows to walk the hills. She hasn’t learned how to change her stride and pump her arms, to manage her energy on the climb. Every time she hears me approach, she picks up her pace again, determined not to be The Last One. Once I realize this, I feel somewhat annoyed. Today, I bear the stigma of The Last One. She doesn’t want to be me.

I have to fight my vain desire to pass her up just to make a point. I decide to treat this like yoga. I tell myself that I have to follow my breath and find my body’s edge. Stop comparing, I tell myself.

I am pleased with myself as I get into mile 7. The run has been good, and I’ve carried myself the whole way without walking. I feel strong enough to go for a few more miles if needed.

We approach another hill, and the woman slows so that now she is only a few yards ahead of me.

As the hill gets steeper, she stops to walk once again.

This time I pass her up.

I find a metaphor in this moment, too.

I may not be able to do speed and distance, but I have not lost the strategy for dealing with the hills. My illness may have set me back, but I still benefit from the wisdom of my experience.

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