My View of Breast Cancer According to Brinker

Whenever I set about writing a blog post, I have in mind that I will try to be as objective as possible, particularly if I am discussing a subject that I know to be contentious.  The trouble is, it's getting harder and harder for me to  be fully objective when I am discussing issues related to breast cancer fundraising and research.  After all, as a person living with Stage IV breast cancer,  research is tantamount to my hopes for recovery and a long life.

Today's post is a prime example.  Recently a reader sent me a link to a televised interview between Tavis Smiley of PBS and  Nancy Brinker, the CEO and founder of Susan G. Komen for the Cure®.  The interview aired on October 1, 2010 to mark the start of Breast Cancer Awareness month, and to promote the launch of Brinker's book,  Promise Me: How a Sister's Love Launched the Global Movement to End Breast Cancer.

Click here for a link to the interview and a full transcript.

I started watching the full 13-minute interview with an open mind.  But as I continued to watch the interplay between Brinker and Smiley it dawned on me that my goal of remaining objective was going to be an impossible task.   I run my fingers through my newly short hairdo and am reminded that soon there will be no hair  to run my fingers through. As I write down notes during the interview,  I realize how difficult it is becoming for me to write with a pen.  Tumors are now pressing on vital nerves,  and my writing arm is rapidly losing strength, and certain fingers are numb.  Writing by hand has become a laborious task with the end result looking like something akin to chicken scratchings.  In addition, I'm so tired from my new chemotherapy regimen that concentrating for any length of time seems a monumental feat.  Finding the energy to blog is getting harder.  I'm sure chemo-brain is becoming a factor as well as I struggle to  find and, indeed, spell common words as I construct my sentences.  Yes, objectivity was being replaced with the difficult realities of metastatic breast cancer and treatment.

But I persevered with the interview, waiting for Nancy Brinker to say something that might give me hope.  I watched with anticipation even thinking that her words might convince me that Komen's activities are beyond reproach.  Have I been wrong in questioning the activities of the Komen organization?   Then I had one of those "ah-ha" moments that Oprah always talks about.  I was watching and listening to this interview with the eyes and ears of a woman living with metastatic breast cancer.  I was already angry when I started watching the interview.  I wanted to know: Where is my cure? When is my cure?  I'm sick, and I don't have time to waste.  Where is all that money going?  I watched, I listened and I waited.  Would my anger transform when I got the answers I needed?

Unfortunately, this is what I heard. That the public can't handle the unattractive truth about breast cancer.  That the only way to raise money for the cause is through feel-good experiences and products.  That people shouldn't think about dying from this disease.  That 5-year survival rates for early breast cancer are the only statistics that matter.  That metastatic breast cancer is still unmentionable and a lost cause financially.  That more of Komen's money is going to research than is actually the case.

And so it went, and with each passing minute the angrier I became.  There were many points that I wanted to take issue with to present a fair and balanced discussion.  As the interviewer and in the interests of responsible journalism, Smiley should have dug deeper.  He didn't, and instead this interview sounded to me like a paid advertorial for the Komen organization.

Here are my thoughts.

JOYFUL CONSUMPTION

(Minute 1.34) Nancy Brinker ("NB"):  "....[I] realized the only way to deliver really conventional messages about breast cancer was through products and things people were doing that they weren't afraid of and enjoying what they were doing."

What does she mean that products are the only way to deliver messages about breast cancer? Is the only way for the public to become informed about a disease through sound bytes and logos? What about curriculum, education, information, scientific evidence? Does NB really think that products contained in my Pink Boob Awards Gallery give anyone useful information about breast cancer? Does the Hope Gun and other products featured in my Selling Hope post do the job of connecting the public with the realities of breast cancer?  What do any of these products have to do with "conventional messages about breast cancer?"

I think what NB really meant to say was that products are the only way to attract corporate sponsors interested in cheap advertising, and a way to tap into the emotional psyche' of a consumer population that wants to "do good".  Komen's approach is the perfect marriage of altruistic appearances and a corporation's inherent motivation to sell products that generate  profits and banner-worthy public relations opportunities.

My disease has become a marketable commodity and nothing more.   The sad irony in all of this is that I believe Komen's approach to cause-marketing has only served to undermine the seriousness of this disease in the public's perception.  With products like those depicted in my gallery, pink guns and ridiculous novelty items, breast cancer the disease is becoming a laughing-stock.  The public is being conned out of their hard-earned money with no end to the consumrist circus in sight.   Meanwhile I sit here with my hopes for recovery; no better than they were when Susan G. Komen herself was fighting the disease all those years ago.

SMILE, CELEBRATE, PRETEND.....



(Minute 2.06) NB: "Also, the Race for the Cure and the other events that we have because our job is to celebrate hope and to give people a vision for the future, not to depress them all the time and say, you know, you're gonna die from this."


This one really gets me.  Celebrate hope? What hope is she talking about?  The hope that CJ" (Dian) Corneliussen-James, president of METAvivor Research and Support, Inc, wrote about in her guest post on this blog entitled "Trying to Stay Alive on Two Percent"? Less than 2% of all cancer fundraising is allocated to metastatic cancer research, of which breast cancer is a subset.  There is nothing in that statistic that gives me a reason to celebrate hope or gives me a vision for the future. In fact, this data tells me that I have every reason to be pessimistic, not optimistic.  What "vision" is there for people with Stage IV when their prognoses are grim, their treatments are grueling, debilitating and generally temporary in success.  Yet their self-proclaimed leader of advocacy implies a "don't worry, be happy" attitude.    Easy for you to say NB with your "celebrations of hope" and "visions for the future."

How nice that NB wants to protect us all  by not talking about the depressing, yes depressing, fact that 40,000 women each year in the U.S. and hundreds of men are still dying from this disease.  Depressing? You bet.  Truth? Absolute.  Read the National Breast Cancer's Coalition 2020 White Paper for more sobering realities on how little progress we have made in the fight to end this disease.  

Nothing to celebrate there either.  Perhaps it's time for Komen to recalibrate the message?



FROM ABSENT TO ATTRACTIVE


(Minute 4.20) In discussing why breast cancer wasn't talked about in the past...

NB: Because it wasn't considered attractive or it wasn't considered the thing to do, to talk about cancer out loud.


I find NB's use of the word "attractive" in this sentence to be an interesting choice.  Does she imply that through the work of her organization, breast cancer is now considered "attractive".  Certainly, this is precisely the issue raised in a recent essay by a writer's collective that I featured on this blog,  entitled Miss Pink Elegance.  Yes, we speak about breast cancer now, but the culture seems to be largely constructed around pink ribbons and images of pink pleasantry and beauty.  Ironically,  predominant breast cancer culture is still not really about the disease itself.

When was the last time you saw an image like this at right? Almost never, except perhaps in your surgeon's office?  This is the ugly truth.

There is still nothing attractive about breast cancer.

Unless you subscribe to Komen's vision for breast cancer which is illustrated by a recent race advertisement on the left.    This is the image of breast cancer that the public is being sold.

Thanks to Komen, breast cancer (the cause) is now attractive. This is supposed to quell my anger? Hiding the truth and prettying it up with makeup, smiles and fashion? No.  I'm no less angry.







MISDIRECTING THE PUBLIC


(Minute 4.33) NB: "You know, the five-year survival rate for very early breast cancer in those days was 74 percent. Today, if everything's done right, it's almost 98 percent."


(Minute 10.30) "..[w]e can conquer early breast cancer"


I've heard this 98 percent statistic quoted many times.  The problem with this statistic is that it's often quoted out of context and overused.  Look at survival rates.  For which group does the 98 percent survival rate apply? Not Stage IV.  Not Stage III.  Not even Stage II.  Check out the American Cancer Society's statistics.  Increase stage:  Decrease survival.  By focusing on a five-year statistic that only applies to a small subset of the diagnosed, NB  contributes to the misconception that breast cancer is a completely survivable disease.

This disservice to the diagnosed doesn't address existing controversy about diagnosing and treating pre-cancerous (Stage 0) conditions; conditions  that may never evolve into anything life-threatening.  Are these types of conditions included in this statistic thus skewing the survival rates?  At the same time the 98% statistic  and the statement that "we can conquer early breast cancer" doesn't speak to the fact that treating an early stage breast cancer is no guarantee that metastasis won't ever occur.  They do.  And sometimes they do many years after an original diagnosis.

NB does not quote survival rates for advanced stage and metastatic disease.  Why?  Because the picture isn't as rosy or "attractive".




THE ECONOMICS OF LATE-STAGE CANCER


(Minute 6.56) Discussing the increasing incidence of cancer.....

NB:  "There's one thing we know. We can't afford - and no one in the world can afford - to treat all the late-stage cancer."

This is the closest NB gets to talking about metastatic breast cancer.  In fact the word "metastatic" is never used in the entire interview.  It is simply alluded to as "advanced" or "late stage".  Does this statement imply that the issue of metastatic breast cancer is not one that Komen wants to address?

I certainly hope not.  Komen has recently appointed Danny Welch PhD, an expert in metastatic cancer,  to their Scientific Advisory Council.  Let's hope that in light of the above statement by NB, that his appointment is not simply a token gesture and  that Komen can afford to fund meaningful and productive research in this area.

Since Komen spent 41% of its 2009 budget on education and only 21% on research, it's no wonder NB doesn't think anyone in the world can afford to treat it.

But lives depend on it, mine included.



WHERE THE MONEY GOES

(Minute 11.19) NB: Well, we have affiliates in 120 cities throughout America and their single task is to make sure they do needs assessment in their community. They fund treatment, screening and education programs in their communities basically focused at low-resource people. With the 25 percent that returns to the national foundation, that's where we fund the cutting edge research.


So if you look at our resources as a pie, basically a little less than half of our money goes to cutting edge research, prevention, causation, etc. The rest of it goes for community outreaching care across all cultures. 


Anger rises.  I actually did look at Komen's "resources as a pie" and I analyzed how Komen spends its valued resources. (Refer to my three-part "Komen by the Numbers" series of blog posts for more in-depth discussion on Komen's financials).

First of all,  Komen spends a LOT less than half  of its revenues to fund research.  In 2009 the "pie" looked like this.  21% of Net Public Support and Other Revenue went to fund research.  That's not even close to the "little less than half" that NB quotes above.

How can an organization that spends less than a quarter of its financial resources on Research be "for the Cure"?  It's a question that I continue to ask.

CURES OUTSIDE THE LABORATORY?

(Minute 11.40) NB:  "No other breast cancer organization has this broad of mission because we don't believe you can cure a disease in the laboratory alone."


I don't understand this statement at all.  If you can't cure a disease in the laboratory, then how can you cure it?  Haven't all the major medical cures come out of a laboratory?  Does NB know something that the rest of us don't? Based on Komen's resource allocations, it seems that she believes that screening, treatment, and education can result in cures!  Is this Komen's justification for not making research a priority in its funding allocations?  Well, yes, that's exactly right.  See my post, "Komen By the Numbers" for a discussion on how Komen apparently defines the word "cure".

I've said this before and I'll say it again; screening, treatment and education will never result in a cure for my cancer, or any other late stage cancer.  Game-changing research, the kind that is generally done in a laboratory,  is the only hope that I have that my cancer will be cured.

But if I'm wrong on this, and there's a way to cure my cancer outside of a laboratory,  please Komen, I beg of you to let me know soon.

In the meantime I'm still angry, and for good reasons.

Pink Town

A recent article in the local newspaper caught my eye; "Fair Haven to Become 'Pink Haven' in April."  This year three of my neighboring towns will be taking part in a campaign known as "Paint The Town Pink". Red Bank, Monmouth Beach and Fairhaven, will all magically morph into Pink Bank, Pink Beach and Pink Haven.  All in aid of, you got it....not research...but breast cancer awareness, prevention and promotion of annual mammography for women.

Most of my regular readers will understand when I say that my first reaction to this news was to  emigrate.  Somewhere far away.  Like Mongolia.  Or Siberia.  Even Antarctica seems like an attractive option.  But would these places be far enough?  Perhaps I can find a spot on an upcoming space mission.

The pink festival will run from April 30 through May 7.  In addition to certain town roads having a pink stripe painted down the middle of them, options for community involvement include:

"...placing a pink piggy bank in a business for donations, window painting contests, pledge contests, or hosting an in-store event during the week.

Residents could also participate through a "Pink Your House" contest where residents would be provided a "Pink Starter Kit" containing lawn signs, flags, and other decorations."

Yes !  Pink your town! Pink your roads! Pink your business! Pink your house!  Show your community that you don't give a crap about other cancers, or other incurable diseases, or anyone else for that matter who might not feel comfortable with all this pinkification.

Then I thought, perhaps it's time I stopped being a snarky cynic.  Maybe it's time to get on board with the breast cancer celebrations and really throw myself into supporting the towns' efforts in raising funds for more breast cancer awareness.  Okay,  so awareness won't ever result in a cure but let's not worry about such trifling matters for now.

So I've come up with an idea.  I'm going to pitch a piece of performance art to each of the towns mayors which will speak to breast cancer awareness.  I hope that they will love it and will allow me to perform it during Breast Cancer Party Week.

Here's what I have in mind.

Sort of like this but with a
cancerous tumor

First I will take a piece of couch foam and a can of spray paint and fashion a large cancerous breast costume for myself.  For some added glamor I will drape myself in a Miss Pink Elegance sash and bedeck my soon-to-be-bald head with a pink rhinestone crown.

Then I will take my breast costumed self to the main street of Pink Haven and I will lie down in the middle of the pink striped road.  It is then that I will give a secret signal to my support team, and I will pretend to be run over by either this cement mixer or this tractor.  Probably the cement mixer for maximum effect.





It is at that point that my support team will summons the police.   The police will take one look at me and immediately call an ambulance.

From there I will be carted off to the Pink Bank hospital.  I will be greeted in the emergency room by the medical staff who, for added enjoyment in the performance art piece, will engage in the "pink glove dance".

Then whilst I am being fake-treated at the hospital we will stage a fire drill.  Someone will summons the local fire department.  All of this staged drama will be caught on camera by the local television station.

Emerging from the hospital in my crumpled foam cancerous breast costume, I will be greeted by the local press corps.  I will proudly and symbolically declare that the town of Pink Bank has successfully crushed breast cancer and I am now a victorious survivor.  Performance art piece complete.

In the evening, I imagine the breast cancer party will continue.  All the town residents will gather in the town square.  There'll be pink confetti.  Pink ticker tape.  Pink balloons.  Pink t-shirts. And pink feather boas for all.

And with any luck Susan G Komen for the Cure ® will also show up in Pink Bank,  just like they did for the 2009 Paint Your Town Pink event in Charlotte, North Carolina.  As the local newspaper proudly declared;

DRINK PINK

Paint the Town Pink bar crawl for Susan G. Komen

Pony up $5 at a participating bar this Friday (full list of locations at www.komencharlotte.org) and you'll get a special pink cup that you can carry with you all night long to 12 different bars - present it and you'll get a deal on drinks and the proceeds from the cups will go to the Susan G. Komen...

This is genius. Pink Bank is known for its bar scene and what better way to raise awareness for breast cancer and money for the cause by engaging in some altruistic binge drinking.

Now I know the American Cancer Society wants to get all serious and rain on our pink parade by putting out blurb like this:

"The use of alcohol is clearly linked to an increased risk of developing breast cancer. The risk increases with the amount of alcohol consumed. Compared with non-drinkers, women who consume 1 alcoholic drink a day have a very small increase in risk. Those who have 2 to 5 drinks daily have about 1½ times the risk of women who drink no alcohol. Excessive alcohol use is also known to increase the risk of developing cancers of the mouth, throat, esophagus, and liver. The American Cancer Society recommends that women limit their consumption of alcohol to no more than one drink a day."

And even Susan G Komen for the Cure®'s website which has a whole section on "Drinking Alcohol" ,  gets in on the depressing act and declares ..."Alcohol may increase breast cancer risk in several ways."

To the pink party-poopers of this world, statements like these might imply that perhaps one should exercise caution in engaging in excessive partying with alcohol.  Even if it is "for the Cure".  But who cares?  It's all just a bit of fun, and it's for a good cause, right?

Anyway once the celebrations are over, and all those pink ribbons, balloons and pink boas have been discarded and the townsfolk have headed home with bleary pink eyes, and a blood alcohol limit that may increase their  risk for breast cancer, the towns' sanitation crews will move in for the cleanup.

I will go home, satisfied and happy with the knowledge that today I helped raise awareness for breast cancer.  The next morning I will sadly discard my cancerous breast costume and take down all that pink bunting and pink ribbons bedazzling my house.  All that is left is for me to do is take out the garbage.

The breast cancer party is over.  At least until October rolls around.

Engaging With The World

Prior to being diagnosed with breast cancer,  I was your typical mild-mannered public accountant who loved her work and being part of a huge organization.  There was nothing more exciting to me than being asked to research and write on some obscure and complicated tax issue.  There wasn't much creativity involved, or if there was, we called it planning.  Always busy, always buzzing and always people.

After leaving my accounting career behind, to focus on my health and continuing treatments for metastatic breast cancer,  something in me changed.  I stopped being social.  I didn't feel like talking to anyone. I retreated into myself and struggled to connect with the world at large. Having put so much energy into moving on from my initial ordeal in 2004,  only to be hit with a recurrence in 2007 and then again in 2009,  I just don't think I had the emotional energy left to give.  Especially when it came to maintaining existing friendships and making new friends.

With time on my hands I started blogging.  Writing became my therapy and a way to distill the insanity of my situation.  I didn't really care if anyone read it.  If I posted once or twice a month and got the odd comment here or there, I considered my scribblings to be a worthwhile exercise.  But although writing was certainly a help,  I couldn't deny that I felt isolated, frustrated and just plain lonely.

Aside from the physical aspects accompanying a cancer diagnosis, there are so many complicated dynamics and emotions that we struggle with everyday.  I  know these are familiar issues to many people within the cancer community and today I share my reflections on the Journeying Beyond Breast Cancer blog.  Click here to read my guest post entitled "Engaging With The World".

Miss Pink Elegance

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.   

This post is republished on this blog via Uneasy Pink.

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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.  “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? 



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

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



JaneRA
1949-2009

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?

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Join me for a Pink Sing-Along

Whilst I've been busy writing about our nation's largest breast cancer fundraiser, Susan G. Komen for the Cure®, in my "Komen By The Numbers" series, in which I've been investigating where all their money goes, my cancer has been equally busy.

After going for scans last week, I was informed that the Cancer Beast has roared back to life and I have some new metastases to add to my already quite fine collection.  This explains my half-dead left arm then.  Tumors pressing on important nerves that serve fairly useful limbs like arms (especially dominant arms) can be a tad inconvenient. Especially if you're a busy little blogger like myself.  I don't want to have to resort to typing with one arm.  That's not very conducive to ranting, let me tell you.

It seems I'm also the lucky recipient of breast cancer skin metastases, apparently a fairly rare phenomenon only seen in about 5% of cases.  Rare? Really? My whole entire case is supposedly rare.  Originally diagnosed at thirty three, aggressive advanced-stage disease, no family history, no apparent risk factors, tested positive for every pathology test out there, rare reactions to certain chemos, metastatic at forty, yada, yada, yada.

Why do I keep hearing rare everything for me? Yet why do I keep finding women of similar age to me, young women going through similar ordeals, young women still dying of this wretched disease? Rare?  I don't think so.  But what is rarer still, is research.  Research that might actually help all these "rare and exceptional" cases of young women with breast cancer.

*Borders on launching into another rant, but pulls back in interests of maintaining sanity*.

So what does this all mean?  Frankly, there was nothing surprising about this last bit of news.  My beloved and I have been dealing with the Cancer Beast for a long time now, and the fact that it's rearing its ugly head again is just another notch in my already quite voluminous medical chart.

Probably the biggest issue, aside from needing to take some aggressive action to stop the Beast, is that I am going to lose my hair.  Again.  And it will be indefinite baldness.  How do I feel about this?  At this point I just feel like I want to get on with the treatment, and the fact that I have to go bald, is just another indignity in the already very long list of indignities that have been the hallmarks of my breast cancer ordeal.  My beloved did say something though that I thought was quite profound.  Always one to look for an upside, even in the shittiest of circumstances, he said this;

"Well look at this way.  At least by losing your hair, people might start taking your illness seriously."

Of course, we've been living the seriousness of this disease for quite some time now.  We know what this disease does to a person, both physically and emotionally.  We know what this disease takes.  We know where this could all lead someday.  We know.  Unfortunately, to the outside world, hair loss is the only visible sign that something is seriously wrong.  When you have hair, it's difficult for the rest of the world to comprehend that your body is harboring an evil agent whose sole purpose in its miserable life is to kill you.  Because you have hair and "you look great".  Genuinely a case of out of sight, out of mind.

This is the cruel joke played on so many people dealing with cancer, for whom hair loss is not one of their treatment side-effects.  This is especially true for people living with metastatic breast cancer.  It may be a little known fact that many of the current metastatic breast cancer treatments don't cause hair loss, enabling us to move incognito in the real world.  Obviously that has its advantages.  For example, no one is likely to come up to you in the supermarket to offer you an instant blessing, and eternal salvation from the Lord above (yes that happened to me the first time I lost my hair).  But the real disadvantage is this. Whilst you have hair, no one really sees your truth or your painful reality.  


Now don't get me wrong, I would take having hair over not having hair any day, but it's an interesting viewpoint that my beloved and I have been pondering this week.


So the bottom line is this.  I'm going to lose my hair.  Nothing much more needs to be said.  It sucks but what can I do?  At this point I'm more interested in trying to slay the Beast rather than worrying about my bald head.  I'm a veteran with all of this stuff now, so I'll cope.  Like I've always done.  Somehow.  


Next week I intend to go and have the pre-hair-loss-haircut.  Might seem ridiculous to some, but it's a tad more dignified than going into the garage with a set of hair-clippers and being buzz cut like I'm at the local dog-groomer.  I'm thinking a mod pixie style will do the trick. Then, depending on how much hair I lose, I will move onto my head wear of choice - the silky gorgeous scarf.  I'm not one for wigs.  Why? Because I think when you wear a wig, you look like you're wearing a wig, so what's the point?  Plus they're hot and they itch and I can't be bothered.   I never liked styling my own hair.  Why would I want to do it for a wig?


Because I don't know when I will see my hair again, I thought I would pose for a photo with my little blog mascot.  This is me with hair.  Remember it.  I think hair suits me.

February 12, 2010

Now here's what I hope I look like after hair loss.  Back in 2004 I attended a cancer fundraiser where my bald self delivered a speech to all the potential donors.  Marisa Acocella Marchetto, author of Cancer Vixen was also at that party.  Now at the time she was still in the process of writing her book, a breast cancer memoir in cartoons, but I did have the pleasure of meeting her, and we traded a couple of emails after the party.  Then her book was published and to my delight I discovered that I had a little cameo role.  Here's how I apparently looked back then;

That's me in the middle.

So "heavier chemo" and hair loss be damned. I'm taking a deep breath and embarking on this next part of my ordeal with an open mind and hopes that the Beast can be kicked into submission.

I'll leave with you a song that gets me in the mood for a fight.  Play it and sing along with me.

P.S.  It is somewhat ironic that it's a "Pink" song isn't it?

Komen By The Numbers: Education in Focus

As a woman, do you remember when you first became aware of the importance of being vigilant about your health? I'm forty years old now,  but I feel like I've always known.  I grew up in Australia, and went to high school in the 1980's where we had a very strong health and sex education curriculum.  I think this where I must have learned about checking for abnormalities in my breasts as well as the importance of regular cervical cancer screenings.  I also seem to recall my primary care doctor giving me a lesson on how to check my breasts and being a very good student, I listened and religiously checked myself and also went for my regular Pap tests.

This knowledge served me well when I noticed, through self-examination, a difference in one of my breasts back in 2004 when I was thirty-three.  Not a lump; nothing really obvious; just different.  And that was when the real battle began.  Because I didn't have an obvious lump, presented no apparent risk factors and initial tests were inconclusive, I was waved away by my medical practitioner at the time and told to seek "breast massage" as a possible therapy for my imaginary problem.  (See my post "How Did I Get Here?" for the unbelievable story of my initial diagnosis).  After deciding that I would follow my intuition that something was wrong,  I sought a second opinion.  Well the rest, as they say, is history and here I am today at forty years old blogging about my experiences as a woman living with metastatic breast cancer.

I've often wondered though what led me to be so intuitive about my body?  Was it the health and sex education that I received in high school? Was it that good? Was it the doctor I had seen throughout my teens and early twenties who instilled in me this sense of vigilance? And what kind of medical education did that nurse practitioner receive, that led her to wave me away that day despite my protestations?  Me, a person who at the time had presented with StageIIIA breast cancer, despite absolutely no risk factors?

But that's the problem with breast cancer education isn't it?  Because the nature of this disease is that we don't really know when and who it's going to strike next.  Without proven research behind it, breast cancer education is a minefield of uncertain efficacy and a haphazard business of unproven conjecture.

Yet public education is a popular mission for many of our  breast cancer charities.  If the goal is to educate, it's a relatively easy mission  to fulfill.  Produce educational resources - mission accomplished. But it's an expensive undertaking, even though it's not necessarily helping to reduce breast cancer incidence.

A Closer Look At Komen's Education Program

Continuing my series of investigations into the activities of our nation's largest breast cancer fundraiser, Susan G. Komen for the Cure® ("Komen"), in this post I shine the spotlight on Komen's Education program. (Previous posts in this series are available at "Komen By The Numbers" and "Komen By The Numbers: The Context of Research".)

For the financial year ended March 31st, 2009, the Komen organization earned some $331.3 million in total Net Public Support and Other Revenue.  The following chart highlights how the $331.3 million was spent both in dollar terms and expressed as a percentage of Net Public Support and Other Revenue.

The Education program received the highest allocation of $135.5 million, or 41% of total Net Public Support and Other Revenue; in fact,  its highest annual percentage allocation for the six-year period from 2004 to 2009.  The Research program received only $70.1 million, or 21% of total Net Public Support and Other Revenue; indeed its lowest annual percentage allocation for the six-year period from 2004 to 2009.  (For further information on how Komen's program spending has changed over time, please refer to "Komen By The Numbers:  The Context of Research").

Komen's position on their funding priorities are clear, as corporate spokesperson, Andrea Rader stated on Alicia Staley's recent blog post.

"Research is just one piece of delivering cures for cancer. Education is critical: even today, many women don’t know they’re at risk for breast cancer, or they continue to believe myths like underwire bras cause cancer (they don't). 

Once women are educated, they need screening at the appropriate time.  And if they’re diagnosed, they need access to care, where treatments developed through research can help them.  Many women and men also need some help getting through their treatment, and they need someone fighting for them.

That’s why we fund all of it: research, education, screening, treatment programs and advocacy work."

And it's true, Komen does fund all of it. But $135.5 million for Education?  Almost double the amount allocated to the Research program? $135.5 million sure seems like a lot of money.  How much of this figure is actually spent on Education?

After reviewing Komen's audited financial statements, and the Education program allocations for each of the six years from 2004-2009, I produced table summaries (attached at the bottom of this post), which show how Komen spent each year's Education program allocation.

In reading the tables below and summarized in the following chart, consider the following example.  In 2009, from an Education program allocation of $135.5 million, Komen made actual education awards and grants of $46.7 million or 34% of the total Education allocation.  Other notable expenses included $11.6 million on Salaries; $13.6 million on Professional fees (generally includes legal and accounting fees); $6.1 million on Production expenses for Race for The Cure; $4.9 million on Printing and Publications; $2.9M on Postage and Shipping; $2.5M om Travel;  $1.5M on Conferences and remaining operating expenses totaling $45.4M million.  To summarize, actual Education grants accounted for 34% of the Education allocation of $135.5 million. Education program operating expenses accounted for 66% of the Education allocation of $135.5 million.

Indeed for the entire six year period from 2004-2009, the average percentage spent on actual Education awards and grants was only 37% of the total Education allocation, with the remaining 63% spent on Education program operating expenses.

What does Education Entail?

The ostensibly high Eduction program operating expenses may be partially explained if Komen is producing much of its Education material  and programs in-house which might include brochures, audio-visual resources, other breast cancer educational information, upkeep of the Komen website, in addition to awarding grants to outside organizations.

Relevant to its Education program, Komen's 2009 Annual Report states:

• More that 3 million print and audio-visual educational materials with life-saving messages were distributed to  Affiliates, grantees and the general public in 2009. 

• In the first quarter of the year, our breast health messages reached 4 million people through Anuncio, a service  providing patient education in English and Spanish in doctors’ offices, malls and in most HEB pharmacies in south Texas communities near Houston, College Station and Austin. This year, they’ve expanded their reach to include Atlanta markets. 

•  Our Breast Care Helpline staff answered about 3,000 calls and 300 emails during just one quarter of 2009. 

• In less than six months, more than 80,000 fact sheets have been downloaded from the Understanding Breast  Cancer section of our Web site, komen.org. 

Komen provides only limited discussion of its Education program in its  2009 Annual Report, so it is difficult to say with any precision whether the Education program operating expenses are reasonable or exactly what kinds of educational activities are being funded.  It is possible to search Komen's website for domestic affiliate grants, however grant classifications and amounts are not specified.  (Click here to see an affiliate grant keyword search of "2009").

There is clearly no debate that Komen is fulfilling it's priority to "educate" the public about breast cancer.  But I have to question whether the $135.5 million  Komen spent on its Education program in 2009 represents value for money for it's many, many donors.

After all, we can educate about apparent risk factors; so-called prevention measures like exercise, healthy diet, lifestyle factors and so on, but for so many women who have been diagnosed, these factors do not sufficiently explain their breast cancers.  We can educate on the advantages of early detection, but there is no medical certainty that a woman won't experience recurrence or metastasis in the near or far future.   We can educate about the importance of self-examinations and mammograms, yet these screening methods are no guarantee that a breast cancer tumor will be detected.  We can educate women about available treatments, but this is no substitute for game-changing research and the scientific facts that women need in making decisions about their treatment options.  Research is still lacking in all of these areas.  We are educating the public about a disease that has no cure and for which our knowledge is still extremely limited.

Why does Komen continue to pour money into breast cancer education and awareness programs, at ever-increasing rates and at the expense of research which could potentially alter the course of our breast cancer epidemic? Why we do have hundreds of breast cancer organizations producing the same educational information, all incurring their own costs in doing so,  and decreasing the overall funding pool available for potentially life-saving research?  When are our nation's largest breast cancer fundraisers going to realize this duplication of efforts with respect to education is, quite simply, a colossal waste of money?  When are our breast cancer fundraisers going to realize the economic synergies of sharing and integrating their Education programs?  

I'm not saying that breast cancer education isn't an important facet in dealing with this disease epidemic.  But all the education in the world is never going to provide us with a cure or the kinds of treatments that will allow us to live long and productive lives.  I'm simply questioning whether there is a better and more economically efficient way  for our breast cancer charities to fulfill their breast cancer education missions.  

For that to happen there needs to be a spirit of cooperation and a common goal that is neutral to the spoils of corporate partnerships, sponsorships and other business incentives.  The $542.5 million spent by Komen on its Education program from 2004-2009 sure is a lot of money for us to be getting our priorities wrong with respect to this disease.

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Page 1 of 2: Financial Years 2004-2006

Page 2 of 2: Financial Years 2007-2009 and total for 2004-2009.

                            

Trying to Stay Alive on Two Percent

Since the New York Times published its recent article, A Pink-Ribbon Race, Years Long, and with the passing of Elizabeth Edwards late last year which attracted huge media attention,  metastatic breast cancer is having a spotlight moment of sorts.  And not before time.

The current level of research for metastatic breast cancer (and other metastatic cancers) is abysmally limited both in the United States and the rest of the world, despite metastases accounting for the majority of cancer deaths.

Today, I introduce you to guest blogger, "CJ" (Dian) Corneliussen-James, president of METAvivor Research and Support, Inc, who weighs in on the current state of metastatic breast cancer research and support, and a possible way forward.  This is not the breast cancer story we normally hear, and I hope you'll agree, this is a powerful and eye-opening article, which I urge you to share with your community.

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Trying to Stay Alive on Two Percent

by CJ (Dian) Corneliussen-James, President, METAvivor Research and Support, Inc.

My interest in the allocation of cancer research funds began January 13, 2007 ... the day I learned that only 1% of the $5 billion annual cancer fund was devoted to any stage IV cancer, despite the fact that stage IV causes 90% of cancer deaths.  I had just been diagnosed with metastatic (stage IV) breast cancer, or "BC mets" as we tend to call it, so the statement really hit home.

The stage IV research fund allocation is now considered closer to 2%, but that is still minuscule and breast cancer is a subset of that.  One might think breast cancer organizations would look after their own stage IV community.  They do not.  The vast majority of their funds go into prevention and early detection.  Their few so-called metastatic breast cancer research grants are often aimed at preventing breast cancer from metastasizing, not at finding solutions for those already at stage IV.  For this reason all the millions poured into the disease have done nothing to change the fact each year 73,000 - 86,000 Americans are diagnosed with terminal breast cancer and close to 41,000 die of the disease.

These and other facts are not well known.  The media, cancer organizations and drug companies prefer not to recognize our existence except to highlight an individual now and then as a stellar example of positivity and health despite their disease -- hardly the typical person with stage IV breast cancer.

The only ones trying to rectify this situation are non-profit organizations run by patients, working out of their homes as volunteers, dependent upon hard-to-get donations and grants and trying to get someone outside the metastatic breast cancer community to listen.  How many non-profits are doing this?  I know of only two.  METAvivor Research and Support, Inc , of which I am President, and Metastatic Breast Cancer Network, directed by Ellen Moskowitz.  Upon meeting Ellen in 2008, we quickly agreed that any duplication of effort was a complete waste of time, energy and money.  So we work as complimentary organizations with METAvivor targeting research, support and awareness and MBCN targeting advocacy.  We lend each other support, encouragement, advice and friendship.  Progress has been slow, but we have made some headway.

METAvivor awarded its first research grant in January 2010 and we are very pleased with the results. We could do a lot more with an increase in donations, but we work hard to put our small grants to good use.  METAvivor is willing to fund the out-of-the-box ideas ... the ideas others will not touch.  We do this in the hope that at the end of the year the results can be placed in a nice, neat package that appeals to the "big bucks" organizations, which will hopefully pick up these projects and fund them to completion.  METAvivor also promises something promised by no one else.  We put 100% of every research-designated donation into our research grant because what we want more than anything is a solution that will allow all stage IV patients to live without the constant knowledge that each year could easily be their last.

Why are other organizations not funding stage IV research?  Here are my thoughts:

1. Image and Turn-Around:  Grant-givers prefer projects of short duration with a relative certainty of success.  That is good for the image and encourages future donations.  Mets research is enormously complex and the best chances for significant improvement tend to be out of the box ideas. Such research takes longer to accomplish and the predictability of success is shaky.

2. They are Getting Away with It.  Cancer organizations have used token advances to claim they are making great strides forward with metastatic cancer.  The advances they speak of are rare and normally involve extending life at best for several weeks or months, but this is not made public.  Even those who know the truth keep giving, including some of those dying of the disease.  They are caught up by the glamour, the big names and the enticing events.   There is no need to take the difficult road.

3. Money .. Money .. Money.  Metastatic cancer research is enormously expensive, especially if sufficient models (animal or otherwise), which are critical to much of the research, are to be developed.

What would METAvivor do if money were not an issue?  No question there.  We would convene a conference and bring together the world's premier, career metastasis researchers to develop a 20-year collaborative plan aimed at eradicating death from stage IV breast cancer.  We know this is possible .. we need only the funding.

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Brief Biography:
After spending 24 years as an Air Force Intelligence Officer, "CJ" (Dian) Corneliussen-James, retired as a Lieutenant Colonel and took a Senior Analyst position in the Defense of Defense.  Slowed down by the diagnoses of both metastatic breast cancer and systemic lupus in 2006, she retired from the government but was soon busy running a support program for metastatic breast cancer.  Her quest to fund much needed research for the disease led to the establishment of a 501(c)(3) non-profit organization, METAvivor Research and Support Inc., of which she is President.   CJ lives in Annapolis, MD.

How Would You Spend The Money?

Today, dear reader,  I am putting you in charge of a charity.  Your charity's stated mission is to find a cure for a presently incurable disease.  On the back of this mission, your charity has successfully raised a large sum of money from both corporate sponsors and the general public.  It's time to meet with your Board to decide how to spend the donations your charity has received.

If a charity's mission is to CURE a disease, what should be it's TOP priority in spending the donations it receives?

Please take five seconds and submit your answer in the Poll located in the right-hand sidebar.