My Breast Cancer Advocacy Focus: A Big Shift

I never set out to be a breast cancer advocate.

Two years ago I was looking for a good cause to align with, as I set out on a cross-country motorcycle trip. When I asked people for suggestions, breast cancer of course came up, but it wasn’t my first choice for a cause. The proliferation of pink events and high-profile news stories for breast cancer made me think I should turn my efforts to something that actually needed some help. Breast cancer seemed to be doing fine without me.

How's this for pink bling?

But when I found out about a group of women from the US and Canada who rode their pinked-out bikes each summer to raise money for breast cancer research, things took off for me. I checked the  Charity Navigator scores of the beneficiaries I raised funds for, and thought my due diligence was complete.

I strapped a pink bra across the windshield of my own motorcycle, a modest effort compared to some of my fellow bikers (like the one pictured right), but nonetheless, people were attracted to that bra. They knew I must be doing something for breast cancer, and stopped me to tell me their story or the story of someone close to them. There were times I’d hear one story at the gas pump, another in the bathroom, and more in the concession area. I had no idea there was so much cancer in the world. My book, Live Full Throttle: Life Lessons From Friends Who Faced Cancer was born of these conversations from the road with strangers and from my fellow motorcycle riders.

 Where’s all that money going?

This year, as I began touring with my book and preparing for my annual road trip, I decided to scratch the mental itch I’d been feeling, the one that suggested there might be something more important I could do for breast cancer causes than raise money. As I deepened my understanding of the cancer charity landscape, I learned that a well-run, high-scoring charity could nevertheless be pouring money into programs that have nothing to do with preventing or curing the disease, the things that interest me most.

I wondered why there was so little money being spent on the environmental and nutritional factors that contribute to cancer rates, and why so much money was channeled to pharmaceutical companies, which make drugs that don’t prevent cancer at all. I started digging, and my research led me to the film Pink Ribbons, Inc. based on a book of the same title.

Pink Ribbons lays bare the conflicting interests of those claiming to have a passion for curing breast cancer, including some of the most-recognized breast cancer charities. The movie also examines how people have been lured into shopping for a cure instead of being activists–holding charities, companies, governments and other institutions accountable for reducing the incidence of all forms of cancer.

I learned that while the Susan G. Komen Foundation has donated over $600m to basic clinical research and the annual Avon walks have raised over $380m for breast cancer causes, there is little to no coordination for the research that’s funded and indeed. The lion’s share of research dollars go to Big Pharma, which has no economic interest in curing the disease. The US federal government’s National Cancer Institute leads 37 agencies, yet there is an endless repetition of research that seeks to find an incremental increase in life (rather than prevention or true cure). Few are researching the kinds of  cancers that metastasize.

The vile business of “pinkwashing”

I also learned about the vile practice of “pinkwashing,” which occurs when companies that produce products that increase the RISK of breast cancer also MARKET these same products to BENEFIT breast cancer.  Avon is guilty of pinkwashing, since it both sells cosmetics that are laden with carcinogens and uses the breast cancer cause to sell those cosmetics (see the above statistic on money raised).  Revlon and Estee Lauder are equally guilty, but pinkwashing transcends cosmetics peddlers. Ford Motor Company is another (of many), since it markets its Ford Mustang to breast cancer patients, while its manufacturing processes are linked to all kinds of cancers.

I’ve decided there should be a special place in hell reserved for pinkwashers like Eli Lilly (because our courts have now decreed that corporations are people, I guess that means they also have a hereafter). Lilly is the only company in the world making and distributing rBGH, an artificial growth hormone found in many dairy products that is linked to increased risk of breast cancer. Eli Lilly also manufactures breast cancer drugs. That’s a highly lucrative profit cycle, deserving of outrage.

Here’s what I learned about the pink ribbons industry from Pink Ribbons, Inc.:

Pharmaceutical companies use money to provide a marketable product, something that will increase survival for a period of time — even three weeks — but which can be very profitable for that slight period of time. “They don’t seem to be interested in prevention, but this is how capitalism works.” ~Ellen Leopold, author of A Darker Ribbon: Breast Cancer, Women and Their Doctors in the Twentieth Century

Big players on the nonprofit boards of the “cancer establishment” are filled with members from pharmaceuticals, chemicals and energy industries. This is a co-mingling of those responsible for the perpetuation of the disease with those trying to cure/prevent it. ~Dr. Samantha King, author of Pink Ribbons, Inc,: Breast Cancer and the Politics of Philanthropy

Of all the millions raised, only 15% goes to prevention; only 5% of research goes to the environmental cause of breast cancer.

Dr. Susan Love

What science knows–and doesn’t–about breast cancer

Here’s what I learned about the disease itself:

>50% of women who are diagnosed with breast cancer don’t have one of the major risk factors that we know about…but most of the research is not targeted at answering those questions.”~ Dr. Mhel Kavanaugh-Lynch, Director of the California Breast Cancer Research Program at the University of California

“Slash, burn and poison*…is what you do when you don’t understand (the disease).”  Dr. Susan Love, President & Medical Director of the Susan Love Research Foundation

 “Only 20-30% of breast cancer happens in women with risk factors. If we can only explain 20-30% of breast cancer, we don’t know what causes it. We’re missing something big and if we keep looking at the same risk factors we’ll miss it.” ~Dr. Susan Love, President & Medical Director of the Susan Love Research Foundation

There are three categories of people who get a cancer diagnosis from a mammogram:

1. Those who have treatable forms of breast cancer, for whom early detection saves lives
2. Others who have something that will never be life threatening, and if it’s treated, the treatment makes them sick/kills them
3. Those who have a form of the disease that’s so aggressive that no currently-available treatment is going to heal, no matter how quickly it’s found

 Questioning our worship for the workings and intelligence of free markets

I’ll never look at cause marketing the same way. THIS is what happens when we throw important public health issues out to the markets for resolution. OK, that decision will take a while to reverse, so in the meantime, how do intelligent, concerned and earnest breast cancer advocates work within this landscape?

Breast Cancer Action suggests asking these five questions before you use your purchasing power to “benefit” breast cancer campaigns

1.         How much money from your purchase actually goes toward breast cancer? Is the amount clearly stated on the package?

2.         What is the maximum amount that will be donated?

3.         How are the funds being raised?

4.         To what breast cancer organization does the money go, and what types of programs does it support?

5.         What is the company doing to assure that its products are not actually contributing to the breast cancer epidemic?

What this means for my 2012 road trip

I’m still going to travel with a pink bra on my motorcycle. But instead of raising money, I’m going to educate.

While we live in a toxic world, we have SOME choices for what we expose ourselves to. Personal care products are a starting point for my education efforts. I want to help people prevent cancer or decrease their chance of contracting it, so I’ll hand them cards with links to both the Environmental Working Group’s Skin Deep database and to Good Guide, where they can research the products they buy for health, environmental and social responsibility

How about it, readers? What do you think I should do with my advocacy efforts? How would you like to join me?

*slash=surgery, burn=radiate, poison=chemo

Pink Ribbons, Inc. Film Screening and Panel Discussion

Are you interested in cause-related marketing?

Does someone you know have cancer?

Are you raising money for a nonprofit?

Whether you have a personal interest in breast cancer, non-profit fundraising or cause-related marketing, there’s plenty for you to think about in the new documentary film, Pink Ribbons, Inc., which I’m bringing to Charlotte on MAY 3 at 6:00pm.

The screening and panel discussion will take place at Gorelick Hall in the Jewish Community Center, 5007 Providence Rd, Charlotte, NC 28226 at 6:00pm on Thursday MAY 3.

Pinkwashing

This graphic does a better job describing it than 1000 of my words could.

Signing and Speaking in Seattle!

I love my life. I get to travel, ride motorcycles and meet great people for a living! If you’re in the Seattle area the first week of April, please get in touch. I’d love to grab a cuppa and hear YOUR story.

Signing books and riding motorcycles

On Friday, March 30 I’ll hit Seattle at 11am and be signing books at South Sound BMW by noon!

The South Sound team has asked me to stay until 2pm or until the throngs (ha!) disperse.

You know how much I love the Roundel, right? Well, I’ll be riding a F650GS around Seattle for five days thanks to TourUSA Motorcycle Rentals. I’ve ridden the F650GS before and look forward to its responsiveness in metro traffic. The only version of the GS line I absolutely cannot ride is the F800–I can’t even get my leg high enough to swing it over the seat!

East Coasters, if you want to ride the Pacific Northwest but don’t have time to ride all the way out there, consider renting from TourUSA and tell them I sent ya.

Saturday, March 31

I’ll be learning how to “ride like a cop” on a big CHiPs bike at Northwest Motorcycle School. I’ve never had a desire to OWN a big honking bike, but I’m looking forward to learning how to operate one (in a bucket-list kind of way).

I’ll be joined by two or three of my fellow Conga riders — that alone will make it fun for the spectators! I’ll bring the helmet cam. This school runs rain or shine, and as I’ve learned before, rain adds a layer of complexity to the learning experience; but I agree with the old saw that smooth seas do not make skillful sailors.

Tuesday, April 3 at Seattle Cancer Care Alliance

When I visited Seattle a couple of months ago, the managers of Seattle Cancer Care Alliance’s cancer speciality store, Shine, fell in love with Live Full Throttle. They asked me to come back to sign books and speak to the patients staying in the SCCA House and the SCCA patient education department asked my Conga sis, Karen (pictured left), to team up with me for a evening presentation open to the entire community.

We have plans to razzle dazzle ‘em when we’re there April 3. We’ll start with a book signing/mix-&-mingle from 4-6pm and continue upstairs for the “formal” presentation from 6:30-8pm. Both events are free and we’d be delighted to speak to a full house! SCCA is at 207 Pontius Ave. North, Suite 101, Seattle.

Karen’s story

Karen cracking up in Shell, WY 2011

Karen’s got such a great story to tell–if you have a copy of Live Full Throttle, her story is in Lesson Four: You’re Terminal Too, Embrace It. Here’s an excerpt:

Given an eight-year prognosis, Karen says that while you can rail against it, pout, whine, deny, and try every new treatment, the real choice is whether you face cancer as a victim or a survivor. In the words of a true Pacific Northwesterner she resolved, “I’m not dead yet; I’m going to pilot this.” She doesn’t tell people she’s sick, “I’m no different than anyone else, I just have cancer.”

Karen had always wanted to learn how to drive a motorcycle but put it off because she was afraid she’d really love it and would therefore have to “do something about it.” She was right. I met her during our 2010 Conga, when she had been riding just a little over a year. By the time we met again in 2011 she was one of very few to pass a grueling motorcycle course designed by law enforcement officers to help civilians drive like cops.

If you’ve ever wanted to learn how to live life with a gift you never wanted, Karen’s got an inspirational message for you!

I’m hoping to get time with the good folks at Gilda’s Club, Cancer Lifeline, American Cancer Society Breast Cancer Resource Center, and a couple of Meetup groups while I’m in Seattle. Please let me know if there’s someone else in the area I need to know, ok?

Meet Me in Las Vegas!

My dad on his BMW K bike in Colorado

Mid-February I’ll be in Las Vegas spending time with family and bikers (in my dad’s case, that’s an overlap!).

If you are anywhere in the Las Vegas area please look me up:

• Women in the Wind Winter Ride In 2/16-19
• BMW Motorcycles of Las Vegas  2/17/12 at 5pm
• RideNow Powersports on Boulder 2/18/12 at 9am (including breakfast!)

My friend and Live Full Throttle collaborator, Christina Shook, will join me for a private signing event Sunday. This will give us a chance to practice our delivery for future events, including (we hope) the AMA Women in Motorcycling Conference in Carson City this July.

If you’d like to sponsor a signing event or recommend a conference please get in touch. 

Breast Cancer,Inc.: Breast Cancer as an Industry

Since my involvement with breast cancer causes, I’ve become acutely aware of the commercialization of the disease. Looks like this filmmaker is ahead of me.

I see that the film will be shown in Richmond, VA on 2/10/12.  My mother-in-law, whose breast cancer metastasized into bone cancer, is buried there. I’m inclined to go up and see the film and the panel discussion afterwards.

The film draws heavily on the book, Pink Ribbons, Inc. Breast Cancer and the Politics of Philanthropy.

Breast cancer advocacy is being transformed from meaningful civic participation into purchasing products.

The pink ribbon has come to symbolize efforts to find a cure for breast cancer. But it has also become a powerful symbol for corporate philanthropy, boosting the image of corporations, that promote products from yogurt to cars, slicing off a portion of proceeds to support breast cancer research. King, a women’s health issues scholar, explores the phenomenal growth of Pink Ribbons Inc.; the annual massing for the Susan G. Komen Foundation’s Race for the Cure 5K runs; and other high-profile events with huge corporate sponsorships. However admirable the effort to find a cure, King argues that it overwhelms efforts to learn how and why women get breast cancer and how it can be prevented. Prevention efforts could help more low-income women who lack the means to pay for treatment. King examines the history of philanthropy and how breast cancer became such a prominent cause, garnering far more support and publicity than other diseases, demonstrating the ability of American women to flex their political and economic muscle on behalf of an important cause. ~Vanessa Bush Copyright © American Library Association. All rights reserved

How Much will you Charge to Ghostwrite My Book?

Potential clients always want to know how long it will take to turn the content they’re been collecting into a book and how much I will charge to ghostwrite it for them. “Can you at least give me a range?” they ask.

Not to answer like a two-handed economist, but it depends.  Before I can accurately scope my work effort, which is how I determine my fee, I’ll ask you some questions of my own.

Do you have a table of contents? This is not to say your outline will go unchanged, but the process of developing a table of contents  (TOC) forces you to think critically about what you really want to convey and how. Yes, I can help you develop your TOC as part of the overall project or as a preliminary engagement, but if your budget is tight this is a good place to put your sweat equity.

How well organized is your source material? Not just your original content, but also industry resources that you want to quote or refute. Is the source material pegged to chapters in your TOC? As I said above, the process of compiling your materials will serve you well.

What is the single most important point of your book? If you can’t state this in 200 words or less I can’t begin writing.  No worries, though, I can help. Rest assured, I won’t let you slide with something that isn’t crisp and cogent.

What are three skills or takeaways your reader will glean from the book? Maybe you have more than three, but you catch my drift.

What are your goals for the book? I want your book to meet your goals, too. Here’s a post on the goals I had for Live Full Throttle: Life Lessons from Friends Who Faced Cancer.

Start with a “Goldilocks Chapter”

Once you’ve got the outline, source material and reader objectives,  I’ll be able to price writing a Goldilocks Chapter.

What’s a Goldilocks Chapter? Remember the story of  Goldilocks and the Three Bears? One chair was too big, another was too small and the third was just right; one bowl of porridge too hot, another was too cold and the third was just right. In similar fashion, a Goldilocks Chapter isn’t the longest or shortest chapter in the book; it isn’t the introduction or the summary. It’s a chapter that represents both the the length and the level of difficulty of the average chapter in the book.  The Goldilocks Chapter will give us a feel for our working relationship and give me a mini project from which to price the entire book.

It should take two or three weeks to finalize your Goldilocks Chapter. We need time to let the chapter cool down before the final round of edits so we can approach it with fresh eyes, so don’t try to rush the process. I remember sitting down to read the final copy of a book I recently wrote, turning to my collaborator and saying “What in the world did I mean by that?”  You don’t catch errors like that when you write, edit and proof-read like a college kid turning in a term paper in the morning.

Average pricing for a Goldilocks Chapter

Let’s assume  you have a strong sense of what you want to say, how you want to say it, and you’ve done your research. Count on spending $2500 to get your Goldilocks chapter ghostwritten and edited. At the end of the Goldilocks Chapter project we’ll both know what’s ahead of us to finish the book.

This is the juncture at which you can take the chapter and include it in a book proposal or bring in another collaborator. I promise you, this is the best way I’ve found to start a project.

This does NOT mean that every chapter will cost $2500. They will not. There is a great deal of preliminary work in the Goldilocks Chapter that will help us both as we finish writing the book or book proposal. One is the process of transferring your voice to me. The book needs to sound like you–only better.

Once the Goldilocks Chapter is finished, the rest of the book will flow.

Average pricing for the rest of the book

I suggest budgeting $7500 for a 15k-word book, including edits, which I sub-contract (no one should edit their own work). I’ll sub-contract a graphics expert for graphs, charts and other illustrations, too (I’m a wordsmith, not a designer).

If your book runs to 30k words budget $12k, but let’s not get out ahead of ourselves with this budgeting business.

Let’s write that Goldilocks Chapter first.

Resolved to Write a Book?

Book Tour: SoCal to Seattle

After a great book debut at Dilworth Billiards in North Carolina 12/8, I jumped on a flight the next morning for the West Coast to promote “Live Full Throttle” in cities where the International Motorcycle Show is touring.

Long Beach

Southern California was my first stop, and the show in Long Beach is one of the largest on the tour because so many companies have a presence in SoCal.

In addition to signing books and finding distributors for it, I met social media friends for the first time in real life (including moto-journalist Adam Mercado, aka @LeanAngles) shown here.

I saw several marvelous bikes in the “Dream Pavilion”including the Moto Guzzi v7 Racer, which made me swoon a little. I love the looks of a classic bike and of course the Italians are wonderful designers. My friend Neale Bayly, a moto-journalist, tells me it’s a sweet ride too.

Friday night I signed books at Yellow Devil Gear Exchange just a mile from the show. Yellow Devil has a terrific concept–a motorcycle swap and consignment shop with some brand new merchandise sprinkled in for good measure. You can find everything from helmets to racing suits and vintage “motorabelia” like  posters and key chains.

San Francisco

After a quick flight up the coast Sunday night, I spent Monday with photographer Christina Shook, who collaborated with me on Live Full Throttle. We brainstormed book marketing while getting pedicures in Orinda (eat your heart out corporate marketing drones in your gopher cubes!).  Later that night, over bowls of chili with friends, I rehearsed my book tour presentation. Thanks to their feedback and suggestions, the reception it got in Portland and Seattle at the end of the week was unanimously positive.

Motorcycle Gear Shopping

In an effort to improve my “big city” commuter skills I took BART (the train) from Christina’s to San Francisco’s Mission District, where I ate breakfast at the terribly-named but deliciously-stocked Pork Store with my friend Joanne Donn (aka @GearChic). Fortunately I didn’t have to make any transfers in my commutes. A lesson for another day.

Joanne then helped me find new Rev’It motorcycle pants at Scuderia West, also in the Mission District. What a treat, having a personal shopper! She knew which brands offer the functionality I need in cuts for my “American” proportions and emphasized the importance of proper fit. It  hadn’t really occurred to me how dangerous my now-baggy gear had become (I’ve lost weight since I bought the gear in 2010), but skid pads slide away from the areas you want to protect when baggy gear meets the pavement. Ouch.

Marin County Cancer Institute

The next day was spent with friends across the bay in Novato, who took me to the Marin County Cancer Insitute, where one of them is being treated for breast cancer. I learned that Marin County is a breast cancer “hot spot,”  which means the incidence of breast cancer per capita is extremely high.

After touring the Institute, I met Cancer Resource Specialist Diane Brandon (pictured right), who enthusiastically placed a copy of “Live Full Throttle” in the resource center and introduced me to the gift shop team, recommending the book for sale there.   I fully expect to see the book in the gift shop soon!

Portland

Another quick flight brought me to Portland, where I signed books at Latus Motors, a Harley-Davidson dealership. My dear friend Nadine, who put me up at her farm and arranged the signing with Latus, ordered cupcakes with pink frosting ribbons from Safeway and we were both surprised when she picked up this cupcake cake instead. I’ve never seen so much frosting in my life!

Latus has a strong community of riders and in spite of rain and cold the week before Christmas, about 20 of them turned out to hear me talk about the Conga rides I’ve taken over the last two summers and the story behind “Live Full Throttle.” As with Long Beach, many of them were social media friends that I was happy to hug in the flesh.

New Friends Facing Cancer

In the middle of my talk, one woman dashed in with fresh news that a neighbor had just that day been diagnosed with cancer and asked me to quickly sign a book so that she could take it to him.

As often happens, one woman bought two books, one for herself and another for her sister.  She had breast cancer a few years ago and her sister has a recent diagnosis.

An oncology nurse, whose father has cancer, surprised herself by crying during my talk. She thanked me for putting her in touch with feelings that her profession has caused her to sometimes repress.

On an upbeat note, I also met a wish grantor for “Make A Wish”  and learned about the training and screening processes she went through to make wishes come true for children with life-threatening illnesses.

I’m grateful for the people and stories that keep coming into and blessing my life. As I’ve said before, motorcycling brought me to the cancer community quite unexpectedly.  I’m here for a reason that is not clear to me just yet, and trust that I can be a channel for good as I continue walking this path.

Seattle

I love traveling by train, so I was delighted to learn that for $51 I could travel from Portland to Seattle on Amtrak’s Cascades line. Here’s a picture from the dining car.

Continuing my big-city commuter education, I jumped on a city bus instead of renting a car or hiring a cab to get to the apartment I had rented in the Lakeside area of Seattle. I find mass transportation to be sooooo convenient (and cheap). I wish my city, Charlotte, had a more complete system. We have a meager bus service and a tiny line of light rail. That’s it. I digress.

Speaking at the International Motorcycle Show

Saturday morning I opened the show with a talk on recommendations  for newbie riders. After all, three months after I passed my licensing course last year I set off on a coast-to-coast journey, and repeated it this year, returning unschathed both times.

Since these trips involved fundraising with my Conga friends, I talked about traveling with a pink bra strapped across my bike’s windshield and gave some of the back story of “Live Full Throttle.” One of the women in the audience burst into tears when I told this story, then returned several minutes later to finish hearing what I had to say. Since she didn’t approach me, I am unsure what provoked her tears, but I bet was related to cancer.

West Coast Book Tour Schedule, December 2011

Thanks to everyone who came out to Live Full Throttle’s debut at Dilworth Billiards. Great pictures here by my friend Terry Pittman.

The next morning I jumped on a plane for my West Coast tour. Please find me and introduce yourself!

Friday, December 9, Yellow Devil Gear Exchange signing books from 6-8

Saturday and Sunday, December 10-11 International Motorcycle Show (IMS), Long Beach with the WRAPTER booth

Thursday, December 15, Latus Motors  4:00-6:00 pm (870 E. Berkeley St., Gladson, OR) (Portland area)

Saturday, December 17, IMS Seattle 10:30 am  (Convention Center)

Saturday, December 17 at Ride West BMW 2:00-4:00pm  (8100 Lake City Way NE, Seattle, WA)

Live Full Throttle Book Debut!

Please join me as I launch  Live Full Throttle: Life Lessons From Friends Who Faced Cancer. 

• When: Wednesday, December 7, 2011 from 5-7pm
• Where: 300 East Tremont Ave Charlotte, NC 28203 Dilworth Billiards

After riding my motorcycle through 25+ states with a pink bra strapped across the windshield for breast cancer causes, I’ve collected a lot of wit and wisdom about life from friends who faced cancer.

Drop by Dilworth Billiards any time from 5-7 to hear some of my friends’ stories. I’ll run slides from this year’s roadtrip on the wall and bring plenty of copies of the book.

Napoliltano’s will be there with Italian fare like paninis, pasta fagioli, minestrone and tuscan white bean soups, and chocolate ravioli for dessert.

If the weather permits, hang out around the koi pond in the courtyard or stay indoors and pick up a cue stick. Dilworth Billiards has been a great supporter, having hosted Think-Drink-Eat-Pink before I left for this year’s roadtrip.

I’d love to see you, whether you buy a book or just come to wish me well. Nothing formal; leave your tiara at home but bring a friend or co-worker.

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