Please Stop Painting the Town Pink

For those who haven't seen it I wanted to share a great post from Peggy Orenstein on Paint the Town Pink and the general state of Pinkwashing. 
http://peggyorenstein.com/blog/please-stop-painting-the-town-pink

I continued to be amazed by all of the support I have recieved from all of Rachel's friends and colleagues.  It means more to me than you can imagine.   

Anthony

Mocked by the Neighbors

By Anthony

I don’t know where to start. Every day I get up and I'm lost. I don’t know what to do, how to act, where to go. Life has been intolerable since Rachel passed away from breast cancer on February 6, 2012 at age 41.

One thing I do know is that my hometown’s main street is lined with pink flags in celebration of Riverview Medical Center’s annual “Paint the Town Pink” campaign.  PTTP is “a community-wide effort to raise awareness of the importance of annual mammography.” Their goals are “to encourage women in our community, aged 40 and older, to have their annual mammogram; to raise money to provide underserved women in our community; and to make a difference in the lives of women in our community.”

Riverview Medical Center is where Rachel died 84 days ago.  Despite all the money raised for mammograms and awareness over the years by PTTP, Susan G. Komen, and all the other organizations, there was nothing Riverview Medical Center, or any other doctor or medical facility in the world, could do to help Rachel.  

Last year, Rachel blogged about PTTP 2011. It was among her most insightful and popular posts.  This year PTTP 2012 is back, “bigger and pinker than ever, with a gala reception, celebrity appearances, large-scale public events, and the centerpiece of the schedule: the mass “pinking” of homes all over this side of the Garden State Pinkway.”

Are you kidding me? My neighbors are celebrating the disease that took my 41 year old wife and they're raising money for a hospital to provide awareness and tests that could do nothing to help her.  They are mocking my loss in the process. Can anyone think of anything more evil?

The amount of time, energy and resources spent on PTTP and all the other breast cancer advocacy organizations is truly staggering. And I don’t begrudge those looking to celebrate their “survival” or the “survival” of their loved ones. In 2005 and 2006 Rachel and I "Made Strides" in Central Park for the American Cancer Society. Rachel wore a pink survivor t-shirt. We bought into the hype, and didn't look behind the facade because we didn't want to know what was there.  Then everything changed when the cancer returned.

Most people touched by this disease are looking to do something, anything, to help. Believe me, we were those people once.  However, in the absence of genuine leadership, people will listen to anyone who steps up to the microphone. PTTP is at the mic in my hometown all month.  And they are making a lot of noise.

Unfortunately noise doesn't help prevent death from breast cancer. More mammograms don't lower mortality, awareness doesn't cure disease. Mammograms and awareness certainly don't help anybody dealing with advanced disease. Mammograms and awareness don't provide any comfort from my grief, and their pink flags mock me daily.  This stuff is in my face every day, and now it has a gala reception and celebrity appearances.

=====================================

What’s needed? As usual, Rachel was 100% correct - research, research, researsh.  What can you do? Change the conversation.  PTTP, Komen and all the others need to fund more research.  Rachel's Blogging Community friends have been great supporters.  Sarah Horton provides inspiration.  Gayle Sulik provides leadership: They know what to do. Follow them.

Book from Rachel's Service

Anthony writing.  I'm posting the book that was put together by Rachel's friends and family for her service.
Thanks for your continued, overwhelming support.

http://idisk.mac.com/amoro//Public/Rachel1.pdf

http://idisk.mac.com/amoro//Public/Rachel2.pdf

http://idisk.mac.com/amoro//Public/Rachel3.pdf

Thoughts on Rachel

Anthony here.  Thank you for all of the support during this incredibly difficult time.  I wanted to post some of the more amazing stories and blogs that have been written about Rachel over the past couple of weeks.  My comments will follow soon along with a complete video and transcript (thanks to Ronnie and Sarah!) of the Memorial Service.

LA Times
http://articles.latimes.com/2012/feb/15/opinion/la-oe-orenstein-komen-20120215
Gayle Sulik
http://gaylesulik.com/2012/02/rachel-cheetham-moro-1970-2012/
Being Sarah
http://beingsarahblog.wordpress.com/2012/02/16/words-for-rach/
http://beingsarahblog.wordpress.com/2012/02/13/remembering-rachel/
Accidental Amazon
http://accidentalamazon.com/blog/2012/02/13/rachels-memorial-service/
http://accidentalamazon.com/blog/2012/02/12/a-heart-full-of-rachel/
Chemobabe
http://www.chemobabe.com/2012/02/eulogy-to-rachel-part-1/
Dispatch From Second Base
http://secondbasedispatch.com/tag/rachel-cheetham-moro/
Bringing Up Goliath
http://www.bringingupgoliath.com/2012/02/stepping-out.html
http://www.bringingupgoliath.com/2012/02/rachels-words.html
Women With Cancer
http://womenwcancer.blogspot.com/2012/02/our-virtual-very-real-friend-rachel.html
Chemo Brain
http://chemo-brain.blogspot.com/2012/02/for-rachel-with-unending-love.html
Jan Hasak
http://janhasak.com/blog/?p=1192

A few great pictures of Rachel's life

A few of the best pictures from Rachel's life can be found here:
https://www.facebook.com/media/set/?set=a.10150604603506552.424352.607331551&type=1&l=8711e1cc09

Rachel's Celebration Service - Live Stream Video

A Celebration of Rachel's Life will be held on Saturday, February 11, 2012 in New Jersey. For those of you who cannot attend but would like to witness it, there will be a live streaming video you can watch. See details below. Please note that the stream will accommodate up to 750 people on a first come, first served basis.

Meeting Name:  Remembering Rachel
When:  02/11/2012 1:00 PM - 4:30 PM U.S. Eastern Time  (GMT-05:00) 


To join the meeting:

http://bnymellon.adobeconnect.com/rachel/

If you have never attended an Adobe Connect meeting before:

Test your connection: 
http://bnymellon.adobeconnect.com/common/help/en/support/meeting_test.htm

Get a quick overview: 

http://www.adobe.com/go/connectpro_overview

Legacy, part one of many

Anthony writing...I'm completely devastated but am humbled by the outpouring of support from Rachel's friends, family, acquaintances, blog readers and total strangers.  Rachel's cancer advocacy was enormously important to her. Gail Sulik's post below is an amazing chronicle of Rachel's work. 
http://gaylesulik.com/2012/02/rachel-cheetham-moro-1970-2012/

Rachel's obituary and details of services

Rachel Cheetham Moro, born August 2, 1970 in Perth, Western Australia, died Monday February 6, 2012 at Riverview Hospital in Red Bank, NJ after a courageous nine-year battle with metastatic breast cancer. 

Rachel spent the first twenty-seven years of her life in Australia graduating from University, qualifying as a Certified Practicing Accountant, teaching and building a small accounting practice in Perth.  She had an acute quest for adventure that would eventually take her to visit more than 40 countries, and one day decided to go on a two year “walkabout” to see what the world had to offer.  First stop was London where Rachel quickly found work as a CFO of a media company and built a network of friends including her beloved husband Anthony Moro. 

In 2001, Rachel and Anthony moved to New York City where Rachel attended and graduated from Fordham University with Masters Degrees in Business and Tax. Recruited by Ernst & Young upon graduation in 2003, Rachel accepted an international tax consultant position at EY’s world headquarters in Times Square.  Later that year, under the Rockefeller Center Christmas Tree, Rachel and Anthony were engaged to be married. 

Rachel was first diagnosed with breast cancer in March 2004. Multiple surgeries, chemotherapy and radiation treatments followed, with a short interim break for Rachel and Anthony’s beachside wedding, albeit during a late summer Jersey Shore Nor’easter.  Completely bald from the chemo, Rachel joked that at least she didn’t have to fuss about her hair. 

Confident treatment was successful, because everyone “survives” breast cancer, don’t they? Rachel and Anthony began to rebuild their lives. They built their dream house on a hill overlooking the Atlantic Ocean and settled in with Newman the Norwich Terrier always at her side. Rachel was renowned for her dinner parties where guests dined on her gourmet-quality cooking and laughed at her snarky view of the world delivered in her quirky Aussie accent.  Out in the garden, Rachel’s green thumb was the wonder of the neighborhood.

Once again, however, life had other plans and the shocking diagnosis that cancer had returned and metastasized turned their world upside down and shaped the final years of Rachel’s life. Again, surgeries, chemo and radiation followed, this time with no end in sight.  In between the treatment and the fatigue, Rachel discovered it was necessary to bring substantial change to the status quo in charitable giving to breast cancer advocacy organizations.

Rachel directed her fierce wit, eloquence and intelligence to authoring and editing “The Cancer Culture Chronicles” (http://cancerculturenow.blogspot.com) where she both provided and found, true inspiration among the blog’s 100,000 readers.  Rachel believed “it's time to move beyond pink ribbons” and messages of "breast cancer awareness" and start agitating for “real and meaningful action in the fight to eradicate this disease for good.”  Another network of friends entered Rachel’s orbit throughout the process and they were enormously important to her as confidants and therapists over the last few years.  Rachel’s advocacy has had tangible results that will continue to help women with metatstatic breast cancer until the day this terrible disease is finally cured.

Rachel is survived by her Beloved husband Anthony Moro III and her faithful canine companion Newman; her mother Amanda Cheetham of Perth, Western Australia; her father Anthony Cheetham of Caloundra, Queensland, Australia and her brother Peter Cheetham, of Hilchenback, Germany.  She is also survived by mother-in-law and champion Felicia Moro and father-in-law Anthony Moro Jr. of Monmouth Beach, New Jersey; her brother and sister-in-law Adam and Jessalynn Moro and nephews Jayden Ristevski and Xavier Moro and niece Amelia Moro.  She is also survived by a number of dedicated medical professionals in New York and New Jersey and an incredible network of friends on every continent in the world. 

There will be an open house for those who wish to pay their respects at Damiano’s Funeral Home in Long Branch, NJ on Friday, February 10 from 5 pm to 8 pm.

Friends and family are invited to a celebration of Rachel’s life on Saturday, February 11 at McLoone’s Rum Runner Restaurant in Sea Bright, NJ beginning at 12 noon with lunch followed by a service.

In place of flowers or food, the family requests donations to be sent to further Rachel’s cancer advocacy at either of the two Rachel Cheetham Moro Memorials established with the following organizations:

Breast Cancer Action

55 Montgomery St, Ste. 323

San Francisco, CA 94105

https://org2.democracyinaction.org/o/6098/content_item/donatenow

METAvivor Research and Support Inc.

1783 Forest Drive #184

Annapolis, MD 21401

http://www.metavivor.org/METdonate.php

Rachel Cheetham Moro 1970-2012

We are writing on behalf of Rachel of the Cancer Culture Chronicles.  She died early this morning following a long struggle with metastatic breast cancer.  Her blog enlightened and inspired many to think differently about breast cancer.  Her Beloved (and Newman) will continue to write on this blog and we open this space for anyone who would like to share how Rachel touched them, inspired them and gave them courage.

We are all so heartbroken.  Our grief is beyond belief.  Rachel will be grieved knowing that her light shines bright in this world.

For The Cure, Or Not?

The following print advertisement appeared in the January/February 2012 issue of the Brown University Alumni magazine.  Beneath the title, which read "Every 74 seconds a woman dies of breast cancer", was the following text:

The first item that struck me, in the above advertisement, was the logo.  Where's their famous strap line, "for the Cure"?  Compare to the logo at left that currently appears on Komen's website.

Does the dropping of the strap line represent yet another rebranding effort for the Komen organization?  Are they seeking to take the emphasis off being for the cure, in order to lower the public's expectations and avoid the criticism by the likes of the "Grumblers" with respect to Komen's spending priorities, specifically the relatively low amount allocated to research?

If this omission of the strap line does indeed represent a rebranded logo, then I have to wonder where the last thirty years and over $2 billion of funds raised actually went?  Is Komen finally admitting that funding research will never be their top priority, and that a reach-for-the-stars strap line is simply not delivering the kind of success metrics donors and the public alike might be starting to look for?

As I said I don't know if this a rebranding exercise.  Or whether Komen just picks and chooses which logos to use depending on the publication, but I'm keeping my ear to the ground on this one.


Next I looked at the text of this advertisement, which, as usual,  is full of decontextualized factoids and sound bites.

"Last year alone we funded more than 700,000 breast screenings"

To this factoid I say, so what?  Is the number of breast screenings the metric which Komen uses to define its success in early detection? Wouldn't a better metric be the number of deaths that were prevented as a direct result of screening and so-called early detection?  Trouble is, this kind of metric could only really be proven if the person screened ultimately died of something other than breast cancer, and would require a long-term research study.  As we know, people who are diagnosed early can still go onto develop metastatic breast cancer.  In fact, I personally have met a number of women, originally diagnosed at Stage 0/I, for whom this happened.

So of the 700,000 screenings, it would be far more useful to know how many women were diagnosed with invasive cancers? How many of women went onto develop metastatic breast cancer?  How many lives were really saved out of the 700,000 screenings?   Only then can the donating public really understand whether the "700,000 screenings" indicates a level of success worth investing in.

Recent studies have suggested that breast cancer screenings can result in a 20-30% reduction in breast cancer mortality rates.  But as Gayle Sulik, author of Pink Ribbon Blues aptly points out;

If the reduction in mortality is only 30 percent or less depending upon the country, the context, the follow-up, the level of expertise of providers, and the individual profiles of the women (and this is a short-list of just a few caveats), then what are we doing for the remaining 70 percent? [Editor: Emphasis added]

For the world's largest breast cancer organization to crow about 700,000 screenings without providing relevant success metrics is simply not good enough.

"We helped 100,000 people financially through treatment" 

In 2010, Komen spent about $20 million or 5% of their budget on treatment.  For 100,000 people helped, this equates to about $200 per person.  Whilst any money is good money to those in need, realistically $200 would pay for about fifteen minutes of consultation time with an oncologist.  I've been in treatment since 2004.  My first year alone, I paid close to $10,000 in charges that my insurance didn't cover.  What if I didn't have insurance?  $200 would be nice, but it certainly wouldn't even scratch the surface in terms of financial help for treatment.

Given that poverty has been associated with higher cancer mortality, I would argue that treatment assistance should be much higher in Komen's spending priorities, not the lowest as it currently is now.

"We educated millions about breast cancer"

Yes, to the tune of $141 million in 2010.  $141 million or 37% of Komen's annual budget, and Komen's number one spending priority by far!

Compare Education spending to their other allocations.  Extraordinarily high.

"We invested $66 million in breast cancer research and related programs"


It's interesting that this is the only dollar amount mentioned in the ad copy.  And yes, $66 million is a lot of money, but when compared to Komen's total revenue of $389 million in 2010* , and the amount spent on education, it's clear that research comes up far short in terms of priorities.

And perhaps more so in the future if Komen is indeed no longer interested in being for the cure as the ad logo would suggest.

* Note that 2011 financial statements are not yet available.

************

Given Komen's relentless pursuit of the almighty dollar, and its almost megalomaniacal status as the world's leading breast cancer organization, is it not time for Komen to be more transparent about where it's future priorities lie and how it evaluates it's success? 

Don't we, as the donating public, deserve better?   

Come on Komen, what's your plan for the next $2 billion, and if you are no longer for the cure, then what are you for?

2012, With No Apologies to 2011

We're well past January 1st, and I thought by now I'd have something meaningful and inspirational to say.  The blogosphere has been ripe with posts of self-reflection, transcendence, gratitude, resolutions and three words to guide us for 2012.

As for me readers, I've got nothing.  Except if you count the phrase "I'm still here" after my own annus horribulus in 2011, as my important three words.  Yes, that will do.

I also kicked off the new year with an invitation to my 25th high school reunion in November, of which my first thought was not "Do these jeans make me look fat?", but rather "Will I make it?", and by that I don't mean with some long-lost high school paramour.

That's the thing about metastatic cancer.  I'm feeling pretty good right now, even in my one-handed chemo-fogged state, but with the disease at this stage, you never know what fun is just around the corner.  The game can literally change overnight.  And I don't say that from a hopeless kind of perspective. In fact I'm far from feeling like that, it's just simply fact.  You never know.  [Editors Note:  Please don't come at me with the "hit-by-a-bus" analogy unless you want a serious tongue lashing].

Anyway I think I'll RSVP to the reunion with a "Yes! So long as I'm not dead or otherwise indisposed with collapsed lungs, chemo sickness or some other cancer-related crap".

So what I do I want for 2012?

Above all, medical stability.  Medical instability of the cancerous kind is highly inconvenient, especially with all the travel I dream of catching up on this year.  It's also not a good look for a high school reunion.

Secondly, I'd like to resurrect my Can-Do Women blog.  I was off to a really good start in the first half of 2011, then medical instability for the second half sent that priority to the bottom of the pile.  Incidentally, I'd welcome contributors to that blog if anyone feels so inclined.  Check it out.

Third, I resolved before Christmas to give my local in-person support group another chance.  I went to one session in December and of course I hated it.  One too many narcissists who love the sound of their own voices for my liking.  Huh? Bloggers, narcissists?  Noooooooooo.  Anyway, I've decided to give it a couple more attendances, and if nothing else I'll view it as an unacademic social experiment which should provide ample blogging fodder for the foreseeable future.  Unless Lucy Loudmouth decides to shut her mouth and let someone else talk, or I grow some balls and tell her to shut the hell up.

I also might try working on this "gratitude" thing that everybody seems to be buzzing about, even though the words gratitude and cancer don't go together in my mind.  Unfortunately, I tend to misbehave with exercises like this.

I'm GRATEFUL that I have at least one working hand.

I'm GRATEFUL that metastatic cancer is such a pile of crap that at least I have something to blog about.

I'm GRATEFUL that my dog only rolls in skunk excretions once a week.

I'm GRATEFUL that I have so little wherewithal to do much of anything around the house that it gets me out of all the chores I hate (with apologies to Beloved).

I'm GRATEFUL that so many breast cancer organizations are a waste of space, and that I still possess the energy to bitchblog about them.

I'm GRATEFUL that I still have blog readers despite my penchant for sacrilegious snark.

And with that dear readers, I'll leave you with these wise words and wish you all a Happy, Peaceful and Medically Stable 2012.

"Never go to a Doctor whose office plants have died" (Anonymous)

Th 80's have a LOT to answer for!