Taking back October

Taking back October

There is a certain coziness to autumn. After the chaos of summer, it’s the time when we settle back into routine; we find a rhythm. It is the time of comfort food, of warm colors, and crisp breezes. It is the season of pumpkin pie.

Once upon a time, autumn was my favorite season, but all that changed a few years ago.

October – Breast Cancer Awareness month

In September of 2010, I looked forward to October with some enthusiasm. It was my first Breast Cancer Awareness month since my diagnosis 7 months earlier, and I didn’t know what to expect. I thought a month dedicated to people like me might be fun, and there were some amazing fundraising parties, but I was not prepared for the Pepto Bismol-colored tidal wave that engulfed me.

Now, when I think of fall, it’s with white knuckles. I’m either bracing for, enduring, or recovering from Breast Cancer Awareness month. In October, those of us with breast cancer don our pink boas, and work frantically to earn money for the legitimate organizations that are truly working for a cure, or helping people to live with cancer. Meanwhile, hucksters get rich off my misfortune by slapping a pink ribbon on a product, then bumping up the price by $5 to donate $1 to breast cancer charities. Everything is painted pink, even carcinogenic items. Well meaning friends pass around internet memes where they pretend to be pregnant, and this is supposed to somehow give hope, or something, to those women who lost their fertility to breast cancer. Everything is all about breast cancer awareness, as if breast cancer was some newly discovered affliction, and awareness could actually help you avoid it.

Yes, it’s true that there are things you can do to reduce your odds. But as of today, there is no guaranteed prevention, and there is no cure.

This morning, my YSC family lost another angel. This was the third loss for us in as many weeks. Rachel was interviewed for the same CNN Heroes story as me last year – the one where we honored Debbie Cantwell, and the Pink Daisy Project. In this clip, you can hear her voice, you can see the sparkle of her big smile, as eye catching as her orange bandanna.

We are warm blooded women, with hopes and dreams and responsibilities and heartaches. We are mothers, daughters, sisters, friends, lovers. We are individuals.

We are not mascots.

We are more than statistics.

Over the coming month we will be lumped together and presented to you as a barrage of numbers. 1 in 3 get cancer in their lifetime. 1 in 8 will get breast cancer. But I want you to see the faces behind the numbers. And I want you to pay attention to what these campaigns are really fighting for. Be wary of campaigns that are just for breast cancer awareness.

My friends are dying, and it’s not for lack of awareness.

I am aware of breast cancer, and I was for decades before I was diagnosed with locally advanced breast cancer.

You, no doubt, are very much aware of breast cancer as well.

Awareness will not prevent breast cancer, and while it can sometimes improve projected outcomes, early detection and treatment does not guarantee that the cancer will not return.

We don’t need more awareness. What we need is a cure.

The Accidental Amazon
Photo credit: The Accidental Amazon (Used with permission.)

How you can help

For all the frustration that surrounds Breast Cancer Awareness Month, there are some wonderful organizations who are doing laudable work in the breast cancer field, and these organizations depend on the funds raised in October for the following year’s budget.

Pay attention to what a breast cancer charity is fighting for. Are they raising money for awareness, or a cure? If they’re working towards a cure, how much of their research money are they putting towards the stage of breast cancer that is actually deadly, metastatic breast cancer? There are also a number of much needed breast cancer charities that do not focus on research at all, but their services are critical to the lives and well-being of women living with breast cancer.

Just to cut through the crap a bit, I’m going to list a few organizations below that do an excellent job of serving the needs of women with breast cancer. This is by no means an exhaustive list.

The Young Survival Coalition: YSC helps young women live with cancer, to connect with others with similar experiences, and to not feel so alone. I credit YSC with helping me keep my sanity while going through treatment.

The Pink Daisy Project helps young women with breast cancer to deal with the practical aspects of life while they are going through treatment. This is the organization highlighted in the CNN clip above, and they help young women who can’t wait for a cure. PDP hired someone to come clean my home while I was going through chemo and to sick to clean it myself. They sent me gift cards to buy the necessities of life when I was counting change from the couch to buy diapers.

The National Breast Cancer Coalition is so serious about curing breast cancer, they set a deadline, 2020. Their approach is science oriented rather than political, and they are committed to this goal.

The Dr. Susan Love Research Foundation – this science oriented research organization is also working on some groundbreaking research towards the goal of ending breast cancer in our lifetime.

Living Beyond Breast Cancer – the goal of LBBC is to empower all women affected by breast cancer to live as long as possible with the best quality of life.

If you find yourself tempted to buy something you don’t really need – just because it’s pink and it’s October – why not send your $5 (or whatever amount) directly to the organization of your choice instead? That way it’s tax deductible, and you know for sure that all the money is going to the charity.

Help us find a cure for cancer. Help us make pink just another color. Help us take back October.

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You can learn more about my cancer story here:

my cancer story | Judy Schwartz Haley

On the radio

On Air

.This is the story of how I became an on air radio personality.

Ok, it’s not. I’m not.

It’s not even about me.

This is a story about Debbie Cantwell, and the non-profit organization she started on her kitchen table, all by herself, to help young women with breast cancer, like me.

This is the story of the Pink Daisy Project, and a generous donation from Bonneville Seattle and the Seattle Seahawks.

The Pink Daisy Project provides care and comfort to young women with breast cancer, by means of grocery cards, gas cards, drug store cards, and housecleaning services.

My little girl and I were invited to accompany Debbie, her mother, and Andrea to the presentation of the honor.

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And a check that will allow the Pink Daisy Project to help quite a few more young women.

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And then, the Seattle Seahawks presented Debbie with the 12th Man flag, signed by all the players.

Yes, of course, my daughter photobombed that shot.

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Then we went into the booth, where Debbie told the story of starting the Pink Daisy Project as a way to pay it forward after receiving help from friends and family members during her own battle with breast cancer.

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And she told us about her own Grandma Daisy, in whose memory this organization is named. Grandma Daisy taught Debbie, and the rest of us by extension, how to live and give back, even while battling breast cancer.

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Andrea spoke eloquently about her two bouts with breast cancer on different coasts of the country, and the difference between one where she was surrounded by family, and the other where she was more isolated. The Pink Daisy Project was there for her when her family was far away.

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And then I got a turn at the mic. Look out Seattle.

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Actually, because the experience is still so fresh for me, it’s still quite raw. I still get choked up. My voice warbles at certain points. I have to take a moment…

Deep breath…

And my story comes out.

Pink Daisy Project Radio Interview

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Thank you to the Seahawks and Bonneville for your generous donation to the Pink Daisy Project, and the help it will provide for young women across the country facing this terrifying diagnosis. Thank you, also, for broadcasting the story of Debbie Cantwell, and how her work is so integral to the recovery of women like Andrea and me.

And thank you Debbie, for being there for me, and everyone else.

Pink Daisy Project on Facebook

Pink Daisy Project on Twitter

You can learn more about my cancer story here:

my cancer story | Judy Schwartz Haley

 

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It isn’t easy being pink

It isn’t easy being pink

It’s that time of year when the world is washed in pink, and people prance around in their favorite tongue-in-cheek, boob-aware apparel. But how much awareness does all this bring to the realities of breast cancer, and how much does this just turn our attention to boobs?

Don’t get me wrong, I have nothing against boobs. I am pro-boob. I was quite attached to mine, till one tried to kill me. Boobs are awesome, an entertaining conversation topic, they bounce, they feed babies, they’re happy, fun playthings. Breast cancer is the Debbie Downer in the room.

There’s nothing quite like a breast cancer survivor telling the reality of her story to ruin all the fun of a cute little breast cancer “awareness” meme. I wish breast cancer was fun. I wish it was cute. I wish buying pink shoelaces would save a life. But breast cancer isn’t cute. It’s ugly. It’s deadly. It doesn’t care if you have a good attitude, or wear pink.

But I can’t wish the pink away, not until we find a better way to fund finding a cure. Unfortunately, not only do we have to endure pink every year, but every year breast cancer survivors go out and parade ourselves around to raise money for breast cancer organizations we believe in. Like it or not, the reality is that many good organizations funding research and programs that help women with breast cancer survive depend on October, on the Breast Cancer Awareness Month, the make the majority of their budget for the upcoming year. And yes, the results of that funding has lead to research that led to treatments that beat back my cancer. And those fundraisers brought in money for breast cancer support organizations that helped me survive my treatments. These fundraisers do make a difference when the money goes to the right place.

So as much as we hate it, we put on the pink and we paste on the smile, because these programs helped get us through it, and now we’re paying it forward so those programs can help someone else. BUT, we’re very careful who we support.

Not everything pink forwards money on to organizations that are seeking the cure, or supporting women with breast cancer. There are so many devious programs out there making money hand over fist selling pink items. Some paint an item pink even though it’s a known carcinogen. Some send no money at all. some just bilk the well-meaning of extra cash. They send $1 to a breast cancer org? Sure, but they bumped the price from $5 to $10 before they painted it pink. That little bit of pink is making them an extra $4 a pop, and you’re buying, not because you need it, but because it’s pink. Sometimes it’s more effective to make a direct donation (also tax-deductable) rather than purchasing something just because it’s pink in October.

Yes, awareness is important. Yes, its the once annual reminder to do the self-exam that we should be doing every month. But we also need to spread awareness that young women, even young girls, can get breast cancer. And men, too. And we can’t stop at awareness.

Unfortunately, there are a lot of amazing women who are dying – and they’ve got all kinds of awareness. Awareness is not enough. We need a cure.

You can learn more about my cancer story here:

my cancer story | Judy Schwartz Haley

 

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Pinkwashing and Breast Cancer Awareness Month

Pinkwashing and Breast Cancer Awareness Month

As we wind down the end of October and Breast Cancer Awareness Month, I’ve heard a number of complaints that go so far as to say we should just forget Breast Cancer Awareness Month altogether because of all the pinkwashing.

What is pinkwashing? When corporate jerks slap a pink ribbon on a product or service to increase the likelihood it will sell during Breast Cancer Awareness Month, but little money, or even none, is actually forwarded on to the non-profits working to cure breast cancer or support those battling this disease.

Pinkwashing is infuriating. It turns my stomach that these corporate creeps are using my crisis to make a quick buck.

But let’s not throw the baby out with the bathwater.

In the seven months since my diagnosis, I’ve met so many women, both here in Seattle and out on the interwebs, who found their lump in October. They found it because of all the chatter, all the pink, all the hype caused them to pause and take a second look at their own breasts. Breast Cancer Awareness Month saves lives.

I recently attended a lecture on breast cancer where I learned, among other things, that the most exciting advances in all of cancer research are happening in the field of breast cancer. Life expectancy is improving every year. Komen for the Cure is second only to the US Government in funding this research. That means all those walks and all those fundraisers really are saving lives. So thank you to all of you who walk or donate. You are making a difference.

The Pink Daisy Project and the Young Survival Coalition also receive a large percentage of their funding during Breast Cancer Awareness Month.  Rather than focusing on research, these organizations help women with breast cancer endure until we find a cure.

Both of these organizations have had a huge impact on my life. Imagination does not do justice to the financial and emotional devastation of a cancer diagnosis. When I was buried under a never-ending pile of housework that added up during treatment, and digging through the couch for change to buy diapers, the Pink Daisy Project took care of the practical concerns that come with battling cancer. They hired a house keeping service to help dig me out of the mess, and sent me grocery gift cards to buy the necessities of life. Each woman is helped in a way that meets their specific needs. They helped one young woman who was losing her battle with cancer to get family portraits before she passed away. It breaks my heart to think how much those photos meant.

The Young Survival Coalition (YSC) is saving my sanity. There are so many issues that come up for young women battling cancer that might be different for the 60 year old woman with breast cancer: parenting, early menopause, more aggressive cancers, higher mortality, sexuality, reconstruction, dating, marriage, fertility, pregnancy, and adoption just to name a few. Many YSC members were told by medical professionals that they were too young to have breast cancer. You can get breast cancer as soon as you hit puberty, and it is the leading cause of cancer death in women between the ages of 15 and 54. In addition to functioning as a support group for young women battling breast cancer, YSC is working to educate the public and the medical community about the growing number of women diagnosed so young, to encourage earlier diagnosis, and to better represent young women with breast cancer in the sample groups for medical trials.

Ending Breast Cancer Awareness Month would seriously impact the ability of these organizations to fund their good work. Sure, there is a buttload of money going into the pockets of corporate jerks that are just using us. But don’t let the fact that these corporate buttheads exist undo a good thing. Educate yourself. Take a close look at what you are buying. Does it just have a pink ribbon attached? Is there more information available about where the funds go – and how much? Remember even a penny is “a portion of the proceeds.”

Pay attention to what you are buying and Think Before You Pink. But lets keep Breast Cancer Awareness Month around for a while. We still need to cure this disease.

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