Wednesday, October 1, 2014

Ignore all that stupid breast cancer pink B.S. in October - do this instead

Finally! An organization that exposes the bullshit of the pink ribbon and all things pink in the breast cancer race for making money off of us! Thank you, Kevin, for leading me to this group, Breast Cancer Action:

Think Before You Pink® – Stop the Distraction

By Karuna Jaggar, Executive Director

September 30, 2014

It’s Breast Cancer Industry Month and the pink floodgates have opened. And again we ask: what have all these pink ribbon products and promotions done for women living with and at risk of breast cancer?

Together, over the years, we’ve changed the landscape of pink ribbon marketing. Pinkwashing is now a household word. People understand that you always have to “follow the money” in pink ribbon marketing. We’ve exposed the hypocrisy in pink ribbon fundraising and achieved some momentous wins against corporations.

This October, we’re taking it further and targeting some of the most outrageous pink ribbon promotions that exemplify everything that’s wrong with pink ribbon culture. We’re calling out the empty awareness, the misinformation, the profiteering,the pinkwashing, the degrading of women, the “tyranny of cheerfulness” that hides the harsh realities of this disease.

We’re sick of marketing giants raking in billions of pink ribbon dollars while women continue to be diagnosed with and die from this disease.

Pink ribbon culture distracts from meaningful progress on breast cancer in six fundamental ways:

Pink ribbon products spread empty awareness. “Awareness” has failed to address and end the breast cancer epidemic. Who isn’t aware of breast cancer these days? Pink ribbon trinkets on store shelves that promote “awareness” ultimately change nothing. We have more than enough awareness, but not nearly enough action that will make a significant difference to whether women get breast cancer or survive it. By making the public think “awareness” is the end goal, pink ribbon culture defuses anger about breast cancer and its devastating impact, and distracts us from the meaningful actions that will achieve health justice for us all. Oriental Trading, for example, is spreading empty awareness via its endless supply of plastic pink ribbon trinkets – the company pockets all the money from these sales!

Instead of more meaningless gestures that defuse righteous anger and distract us from the real issues, we need bold action to address and end the epidemic.

Pink ribbon promotions spread misinformation. Whether by over-inflating women’s risk of developing breast cancer, spreading the myth that “early detection is your best protection,” focusing on a five-year cure rate for a disease that remains a risk throughout a woman’s life, or other ways of cheerfully fudging the statistics, many pink ribbon promotions fail to tell the whole truth. These inaccuracies allow pink ribbon marketers to manipulate consumers’ emotions through fear-mongering and false promises—in order to sell more products. The NFL, for example, is spreading misinformation about breast cancer by repeating disproven and misleading advice about mammography screening in their “Crucial Catch” campaign.

Breast cancer campaigns must offer evidence-based information that does not fuel fear or offer empty promises in the attempt to sell pink products.

Corporations exploit concern about breast cancer for profit. Each October, marketers take advantage of people’s sincere concern about breast cancer to make money and generate good publicity. Companies sell products, make profits, and seek customer goodwill by claiming to care about breast cancer. Yet, most of these promotions ultimately benefit corporations far more than they help women living with and at risk of breast cancer. By tapping into our generosity and genuine desire to help, these companies avoid transparency about where the pink ribbon money goes and too often leave consumers unable to accurately evaluate the promises made in product advertising. Kohls’ recent “Pink Elephant in the Room” promotion, for example, was outrageous profiteering; it exploited concern for women affected by breast cancer to make millions for the company.
Companies and charities must honor people’s good intentions with full transparency and accountability in their breast cancer fundraising and marketing.

Some pink ribbon products are linked to causing breast cancer. Years ago, Breast Cancer Action came up with a term for this, pinkwashing: the outrageous corporate practice of selling products linked to an increased risk of breast cancer while claiming to care about (and profiting from) breast cancer. It is outrageous and deeply hypocritical for companies to make money and gain customer goodwill from products that increase the risk of the very disease they claim to care about! Alhambra Water, for example, is pinkwashing by selling plastic polycarbonate water bottles which contain BPA, a hormone-disrupting chemical linked to breast cancer.
Companies that claim to care about breast cancer should make sure their own products and services don’t increase women’s risk of breast cancer.

Pink ribbon promotions often degrade women by objectifying and sexualizing women’s breasts and bodies. From “save the boobies” to “save the ta-tas” to “save second base,” campaigns like these demean and insult women—and distract from the true focus of saving women’s lives. They highlight narrow standards of beauty (thin, white, able-bodied, and young), depict women as coy sex-objects and too often promote the fantasy of “perfect” breasts. These sexy/cute campaigns hide the lived experiences of women in all their diversity and complexity. NASCAR, for example, is selling breast cancer awareness t-shirts that say “Check Your Headlights” which degrade women by objectifying and sexualizing women’s breasts and bodies.

We must honor women’s rich complexity and full diversity, rather than obsess over narrowly defined body parts as the focus of breast cancer campaigns.

Pink ribbon culture obscures the harsh reality of breast cancer by creating a single story of triumphant survivorship based on positive thinking, beauty tips, and sanitized, carefully chosen images of women living with the disease– and sometimes women who do not even have breast cancer. Breast cancer is not pretty and pink, and many women who “fight hard,” “fight like a girl,” and try to “beat breast cancer” develop metastatic cancer and still die from the disease. Breast cancer is only profitable when it’s palatable, and the pink ribbon covers up the devastating, harsh reality that so many women and their loved ones are dealing with. Hooters’ breast cancer campaigns, for example, obscure the harsh reality of breast cancer by promoting a story of triumphant survivorship based on positive thinking, beauty tips, and sanitized, carefully chosen images of women.
We must value all women living with and at risk of breast cancer and recognize the hard realities of breast cancer, including and especially metastatic disease.

If these marketing giants really care about addressing breast cancer, they’ll Stop the Distraction! They’ll take bold action, provide evidence-based information, be accountable and transparent in their fundraising, stop degrading women, value women’s diversity, and stop hiding the harsh realities of this disease.

Take a stand against the industry that is taking advantage of our goodwill, profiteering off this disease, and distracting the movement from meaningful progress on breast cancer.

Whether you are joining us for the first time or are a long-time Breast Cancer Action activist, thank you for taking action with us and demanding real progress on breast cancer.

P.S. After you let these pink offenders know what you think about breast cancer campaigns, join us on Facebook and Twitter and share our “Stop the Distraction” graphics with your friends and family and let the world know why many pink ribbon promotions do more harm than good.

This entry was posted in BCA Action Alerts, BCA News, E-Alerts.>>

Wednesday, September 24, 2014

60 years young

it would be ridiculous to whine about being "old" at 60, considering what i went through to get here! but it does feel weird, oh so weird, to say i am 60. but 60 feels wonderful and i've never been more grateful - both of my kids are very happy and healthy and i see them often, i love the farm and my farm friends, i ride my bike instead of drive my car 99% of the time, and i love everything about davis and my life here. la vie est belle and i look forward to growing older!


Tuesday, August 26, 2014

Tested Negative for BRCA 1, BRCA 2 mutations

I heard from the Kaiser genetic counselor today that I tested negative for the BRCA 1 and 2 mutations. It's good news for my birth family and also my kids. The counselor said there is a possibility of an unidentified gene which caused breast cancer for me, my birth mother, and my birth grandmother, so my birth sister and her daughters need to be vigilant about yearly mammograms and self-exams. It's good news for me because I don't have to go make plans for an oophorectomy. Here's a good summary of what testing negative or positive means:

I'm grateful for Obamacare and the fact that genetic counseling and testing are now free for members of high-risk families. This may save many, many lives.

Tuesday, August 19, 2014

Jimmy's Music Video Directorial Debut!!

this is my son Jimmy's first music video debut as a director!! congratulations, jimmy and bianca!!

the song is for sale at iTunes here:

Tuesday, August 12, 2014

BRCA 1 and 2 Genetic Testing Today

I was adopted in 1954, and in 1997 I found my birth family and discovered that my mother and grandmother had both died of breast cancer. But I decided against genetic testing for BRCA 1 and 2 because I knew that I would not be able to get health insurance with a new company if I left California, if I had tested positive. I was also very afraid to find out.

In 2008, I was living in Nevada and was diagnosed with breast cancer and had a double mastectomy. I had genetic counseling, but decided against genetic testing because the genetic counselor said that based on my family history (including the fact that my mother and grandmother and I had breast cancer after age 50), the formula indicated that my chances of testing positive for BRCA 1 or 2 was 7%, hardly worth the $3,000 out of pocket since Myriad held the patent and my health insurance would not cover it. I was also still very afraid to find out.

Myriad has now lost that patent, and Kaiser offers the genetic testing to high-risk patients free of charge as a result of Obamacare. So today I met with a Kaiser genetic counselor and he recommended I have the test. He said he thinks I will most likely test negative because of the same factors that my other genetic counselor stated, but because testing positive means there is a very high risk of ovarian cancer, he said it's important to know and then be able to make the decision about having an oopherectomy or not. I would also like to know if I test positive for BRCA 1 or 2 so that my kids can be more informed about their chances for breast cancer. I have a half sister who has two daughters, and I have four half brothers, and this information will be very important for them since we share the same mother and grandmother.

There's something about knowing I'll be 60 years old next month that's made me not afraid to find out if I test positive for these genes. So today I had the blood test. The genetic counselor handed me a kit which I gave the phlebotomist in the lab, she drew the blood, it was quick and painless, the lab will mail the kit to Ambry Genetics, and they'll send the results to my genetic counselor. I should have the rest results in two to three weeks.

There are many genes that can cause breast cancer. Even if a person tests negative for BRCA 1 or 2, it doesn't mean they won't get breast cancer caused by another gene which is undetectable at this time. But I'm glad we have this test for these two genes, which enables us to make informed decisions going forward.

More info about genetic testing:

This is an excellent video from Dana-Farber Cancer Institute about BRCA genetic testing:

Saturday, July 5, 2014

five years since treatment (!!!!!)

being diagnosed with breast cancer is so frightening. and finding out that it's triple-negative breast cancer compounds that fear because of higher rate of recurrence within the first 3-5 years compared to non-TNBC. i remember after the first christmas after my diagnosis, i didn't buy gift wrap on sale for the next year because i didn't think i'd be alive for another christmas. i was 54. since TNBC can't be treated with hormonal therapy (tamoxifen, aromatase inhibitors) after chemo and radiation, all i can do is stay as healthy and active as possible, do self-exams (much, much easier, with a double mastectomy and no reconstruction, checking the scar area for recurrence), and enjoy life. it's been five years and i'm almost 60 - my life is so full and so happy - being with my kids, swimming, riding my bike, volunteering at the farm, writing a book, working on photography projects, loving my life and so happy to be back in davis.

i know recurrence can happen at any time, but having reached the 5-year mark helps me look ahead without the anxiety i've had over the last five years. 'Triple-negative breast cancers have a relapse pattern that is very different from hormone-positive breast cancers: the risk of relapse is much higher for the first 3–5 years but drops sharply and substantially below that of hormone-positive breast cancers after that. This relapse pattern has been recognized for all types of triple-negative cancers for which sufficient data exists although the absolute relapse and survival rates differ across subtypes.' -

much progress has been made in treating TNBC with targeted therapies:

a good overview of all aspects of TNBC:

5 years!


Thursday, January 9, 2014

Chemoprevention drugs available for women with increased risk of breast cancer covered under Obamacare

Now we can add chemoprevention drugs to the other preventative services covered under Obamacare - mammogram, Paps, and genetic counseling.

And a list of all preventative services for women:

And for everyone:

WASHINGTON -- Certain medications that are intended to prevent breast cancer will be fully covered under Obamacare, in new guidance set to be issued by the Department of Health and Human Services Thursday morning.

Women at increased risk of breast cancer can receive so-called chemoprevention drugs, including tamoxifen and raloxifene, without a co-pay or other out-of-pocket expense.

Under Obamacare, most health insurance companies and employer plans must offer certain preventive services at no cost to patients.

The new coverage comes after the U.S. Preventive Services Task Force recommended in September that women at increased risk of breast cancer, due to age, family history or other factors, take drugs such as tamoxifen and raloxifene. The panel said it found "adequate evidence" that treatment with one of those drugs "can significantly reduce the relative risk (RR) for invasive ER-positive breast cancer in postmenopausal women who are at increased risk for breast cancer."

The Preventive Task Force is composed of independent, volunteer physicians and academics selected by HHS. The group makes recommendations to physicians on which preventive services to offer to patients, giving treatments letter grades.

Items or services rated A or B by the Preventive Task Force must be covered under Obamacare without co-pay or deductible by non-grandfathered plans.

"A preventive service is something that is intended to keep something bad from happening," Virginia Moyer, chair of the Preventive Task Force, said in an October interview with PBS NewsHour. "What we do as a task force is we carefully evaluate the science. The science that tells us whether a preventive service is going to benefit people."

Explaining Thursday's clarification, an HHS official told The Huffington Post, "What this means is HHS is making sure people know that because of this recent Task Force recommendation, there is now an additional option available for free for women who are at an increased risk of breast cancer."

Women older than 40 can also receive free breast cancer mammography screenings every one to two years under Obamacare. Genetic counseling and chemoprevention counseling for women at higher risk for breast cancer are covered as well.

Since the passage of Obamacare, USPSTF has also recommended services like screenings for HIV, counseling for obesity and vision screenings for children.

Below is the clarifying language HHS released:

On September 24, 2013, the USPSTF issued new recommendations with respect to breast cancer. What changes must plans make to comply with the new recommendations?
The USPSTF recently revised its “B” recommendation regarding medications for risk reduction of primary breast cancer in women. The September 2013 recommendation now says:

The USPSTF recommends that clinicians engage in shared, informed decisionmaking with women who are at increased risk for breast cancer about medications to reduce their risk. For women who are at increased risk for breast cancer and at low risk for adverse medication effects, clinicians should offer to prescribe risk-reducing medications, such as tamoxifen or raloxifene.

Accordingly, for plan or policy years beginning one year after the date the recommendation or guideline is issued (in this case, plan or policy years beginning on or after September 24, 2014), non-grandfathered group health plans and non-grandfathered health insurance coverage offered in the individual or group market will be required to cover such medications for applicable women without cost sharing subject to reasonable medical management.

Tuesday, December 24, 2013

christmas 2013

this is how i spent christmas eve day - tilling soil in a field to prepare it for planting peas. super, super, super fun! it's very warm in davis, sunny, and being on the farm is such a joy. five years ago i had had the bilateral mastectomy a month earlier and was preparing for chemo in january. i could never have dreamed that five years later i'd be back in davis, working on a farm, driving a tractor, and loving life more than ever. i am so very grateful.


Friday, December 13, 2013

No, we will not be the same after cancer.

i love cary tennis' thoughtful advice, and this is quite wonderful:

Dear Cary,
Last year, at the age of 29, I was diagnosed with a rare kind of thyroid cancer. I was halfway through graduate studies and was just about to embark on a year of research as a student, in Central Asia, where I wanted to explore a new region, do some neat environmental work, and enjoy the adventure.
A quick recap: a handful of days before my plane took off from a city in North America to Asia, my dentist casually mentioned that my throat looked unusually large. I’d had a goodbye party and was all set to leave, but decided to follow up with my doctor. The initial test results were inconclusive. I thought hard about some unnerving statistics presented to me (e.g., a 5 percent chance that this could be something scary). Some of my friends advised to just take my trip, saying, Hey, just go and live your life, I’m sure it’s nothing at all. Eventually I opted to cancel my trip in order to follow it up properly. I’m grateful for that, as it turns out it WAS a scary kind of cancer with a significant mortality risk. There had been no symptoms and the doctors keep saying I dodged a bullet to catch it early enough for successful treatment. Over the last year I’ve marched along, finishing my thesis and the treatment. I know that I’ll need to check in with the doctors every six months for the rest of my life to watch for reoccurrence. But other than that I’m physically in the clear.
I’ve recently returned to the full-time job I had before graduate school. It has health benefits, a decent salary, and demanding work. I go to work every day and stare at the papers. I’m not getting along very well with my new manager and I hear her say that I am not paying attention to the details.
I can’t seem to reconcile the stress of this job with the gravity of all that has happened. Sometimes, when I am alone in my office, I cry. I return home and stare at my boyfriend. We aren’t having a lot of fun these days. I certainly don’t feel a renewed purpose/appreciation for life, as I’ve heard some people can feel after finishing something scary like cancer treatment. I continue yoga and daily meditation, and have tried counseling, but still feel incredibly fragile. Some other young friends of mine with cancer have passed away recently. I feel some kind of immense responsibility, given my recent reminder that life can be short and luck plays a key role. I want to channel this “lesson” toward good, but I don’t know what or how.
Despite having an incredible network of family and friends and boyfriend, I want nothing more than to leave it all behind and sit quietly on a mountain somewhere. My boyfriend and I have been together for five years and had been talking about marriage and starting a family, but now we just argue every day. There are opportunities to do well in my work organization and contribute lots but I am crumbling in the face of the politics and consecutive deadlines. I just can’t seem to get it together, nor give myself the permission to rest and recover from the shock of the past year. Instead of accepting the offerings of love and stability, I feel angry, empty, and fearful of reoccurrence and regret. I don’t trust myself to make big decisions (e.g., quit my relationship and job) since I’m so obviously reeling. I’d really appreciate any advice on how to wade through. Thank you.

Dear Survivor,
I hadn’t yet finished reading your letter when all the shame and wonder and guilt and majesty and gratitude of being a cancer survivor poured in like light through a hole in the ceiling and the tears came like they haven’t come in a while. I’m coming up on four years since my own cancer surgery. I guess that’s it. Plus your letter just moved me — to anger and to tears.
We know things now, you and I and all the other cancer survivors, and when we meet by chance sometimes that knowing floods in. The crying is a kind of knowledge. And it is a kind of prayer: The body’s prayer, the body’s way of saying Please, I like this life. I’d like to keep going, please. I get it, I might be dead in six months or a year. But please, I’d like a few more years. Thusly the body makes its salty prayers. To whom? To the earth that gave birth to us? To whatever mystery sustains us? Who cares? We make our prayers.
So listen: You need permission to rest and recover. You absolutely need this. To think that you would be back 100 percent already is ridiculous. Your life has changed. You need time to recover and grow strong and learn how to live conscious of the grave, precious thing life is.
Your boyfriend and your boss don’t understand. The survivor of cancer needs time to grieve and adjust and recover. The survivor is fragile and explosive and can’t go back to life like it was.
A door has closed.
I can hear someone somewhere saying, Well, you know, when one door closes another door opens, and I want to slap that person. Why do people persist in saying that pernicious and ridiculous cliché? When a door closes, a door closes. Another door might open or might not. (Thank you, Sheldon of “The Big Bang Theory,” for pointing that out.)
So yes, you are angry. Hell, yes. You want to survive like a motherfucker and I don’t blame you. Who wouldn’t be angry? Who wouldn’t be reduced to tears at the sudden realization of just how miraculous it all is? So fuck ‘em if they don’t understand.
You need your time on the mountain. You need your time in a tent in the woods or on a running stream or up high somewhere. So you need permission. If you won’t give it to yourself, then I will give it to you.
As the tears roll down my face I just have to say that you have been through hell and you might be fragile for a while and that’s OK. Cancer changes a person.
Maybe you’re here for a reason. Maybe that’s what this means. I don’t mean that in a superficial way but maybe there’s something you were supposed to do. I wonder if when you heard the diagnosis something flashed through your mind. That moment is a kind of whiteboard, a litmus test: Whatever is most present, big and pressing in your life will show in that moment.
I haven’t read the last paragraph of your letter yet. I’m still crying and writing but let me see about your last paragraph. There’s probably something there.
OK, you want to channel this “lesson” toward good but aren’t sure how. Well, environmental work is important. We came from this planet and we owe it our lives. So maybe your life belongs to this planet and what this is telling you is that your environmental work is your life’s work. How can that not be true? So if there are barriers, which there always are, then you set about overcoming them.
As to the career: Listen, it might not all make sense to you but it does to me. You are studying the environment because you fucking care about it. There is a big problem with the environment. And it is our fault, we humans, how stupid we have been, how we live, and more generally how we minimize what is harm, what is a wound, what is destruction. It’s all connected. After injury and loss comes grief that cannot be outsourced or cut like a line item from the budget but as a culture, we don’t see that. Or if we do, we don’t act on it with compassion. And that is all connected: Our refusal to make time to grieve and repair injury is connected to our inability to see how our behavior injures the environment and to take the time and spend the money necessary to repair it.
Compassion and sentience of life: These things are connected.
To do good for the planet you can start by doing good for yourself. You are a child of the planet and you must care for yourself before you care for the planet. Treat your own wounds. See them as real. Be reverent before them. Recognize that it’s all connected: Your thyroid cancer, the planet, the failure of those around you to respond to the gravity of what you went through: It’s all connected. A cultural critique rises naturally from this: Our economy of endless growth, our unrealistic expectations, our minimizing of your emotion, your illness, your grief, your own hesitation to do what is natural, your own inner conflict: These are all connected.
You say, “I just can’t seem to get it together, nor give myself the permission to rest and recover from the shock of the past year.”
OK, well, if you won’t give yourself permission to recover from the last year, then I will. Permission is hereby given.
You need to mourn and grieve and take as long as you need. You are a new person. This new person is not all full of bright cheer and gratitude and consciousness of life’s preciousness. This new person is also fierce and angry. You will need time to let this new person in.
This mountain you speak of:What does that mean? Does that mean solitude? Does it mean perspective? Does it mean connection to the earth, to something powerful and eternal?
You don’t need to quit your job and your relationship. But you need some time off. And you need help. About a year after my surgery I became deeply, clinically depressed. It was awful. I needed serious help. I got it. It took a year or so to come out of it.
So, yep, while reading your letter I’m crying and I’m still crying. What’s that about? Fragility and beauty of life? Guess so. My own cancer? Guess so. Dec. 17 it’ll be four years since I went into UCSF for surgery for a sacral chordoma and Dr. Christopher Ames and his remarkable posse of skilled, dedicated, brilliant surgeons, doctors and scientists turned their terrible and precise knives and saws upon me. And then turned me back out into the world a week later to hobble about and adjust.
Am I incredibly grateful to be alive? Yes. Do I feel tenderness toward you, whom I don’t know, who have just given me your story? Yes. Do I feel that same thing for the many millions of people who go through this? Yes. But why is it so intense right now?
I dunno. It just is. Trust me, it just is.
I went through hell. I survived. My friend Lori in Seattle went through hell but she survived. You went through hell. You survived.
But we’re not the same. None of us are. Don’t expect us to be.
If I could say one thing, that would be it: Afterwards, we’re not the same. Don’t expect us to be.
Readers: Just a reminder. Feel free to share this column via the social media buttons above. Many people are helped and encouraged by this column, so know that in sharing it you are doing a good thing. Thanks! Happy Holidays!–cary t.