Dear Breast Cancer Age Discrimination, You Still Exist?

Here it is my lovely friends, breasties and survivors; an update and my first (and potentially only) response that I received about my age discrimination inquiry with the organization Bright Pink. I had previously decided not to mention their name on my most recent blog post, but I've since changed my mind. I now find it imperative to state their name as I would not want others to walk down the same path as I have in trying to demystify this breast cancer age discrimination matter. So, read our exchange of e-mails and as always, be sure to comment with your thoughts or list those organizations and people that you have found helpful on this journey. Their correspondence is in Bright Pink! Mine, is well, not so Bright Pink.

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Hi Dee Anne, 

Thank you for your note and I apologize that you had not previously received a response to your inquiries. I am happy to explain why we are focused on preventive breast and ovarian health for young women specifically. Bright Pink was created to fulfill a void in the women's health space. While there are organizations out there that focus on survivorship, there was not a resource for young women who had not been diagnosed. These women have the power to be proactive with their breast and ovarian health. That's where Bright Pink comes in. We focus specifically on prevention and early detection of breast and and ovarian cancer in young women and provide support for women at high-risk for these diseases. In order to be successful in our work, we have chosen to maintain this specific focus. We are not so naive as to think we are good at everything so when someone reaches out that could better benefit from a partner organization, we work hard to direct that woman to the best resources available for her specific needs. This allows us to stay focused in our area of expertise - education and support for young women - and allows other groups to continue to succeed in their specific areas.

Our support programs offer guidance, community and camaraderie for young women who have not been diagnosed but who are at high-risk for breast or ovarian cancer due to a strong family history and genetic predisposition. As a 3-time survivor, your journey has varied greatly from these women, and you should receive specific support tailored to your unique experience. We would never turn anyone away from an educational perspective - all of the information published on BrightPink.org is open to anyone and everyone who can access it - but when it comes to support, you deserve an organization that can best serve you as a survivor. 

Many qualified partners who specialize in survivorship support are listed on our website here -http://www.brightpink.org/ive-been-diagnosed/. 

Thank you for reaching out, and please let me know if we can help in facilitating an introduction to another organization equipped to support you as a survivor. 

Best wishes,
Eden

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Hello Eden,

Thank you for your return response and email regarding my inquiry about your age limits with Bright Pink. It is much appreciated as my last email did not receive a response.

With regard to the main focus and message of Bright Pink, I am in complete agreement that there is a need and a void that has been filled with the Bright Pink organization. And as a 25 year veteran educator, I understand the need for education, prevention, awareness and self-advocacy. Your message is clear in that sense and Ms. Avner's brave decision to have a preventive mastectomy was indeed both an intelligent and courageous choice.

My confusion, however is with the mix of both prevention and survivorship with regard to all ages of individuals. And while I agree that prevention is key for saving lives, the age cutoff, in my opinion, is extremely exclusionary. If the notion is to save lives with this disease, then age is a factor that doesn't belong in the mix. I equate that to having a breast cancer-based organization only for specific ethnic backgrounds - a puzzling notion at best. And as we all know, this disease crosses all gender, ethnic and age boundaries. I shutter to think about a 46 year old woman seeking support for prevention should she identify as high risk. Would you turn her away as you did me? 

Additionally, I am further confused about your message that specifically focuses on prevention and yet you feature breast cancer survivors and Fab-U-Wish Winners who have also been diagnosed on your website. So, in light of this, it does appear that survivors are welcomed to Bright Pink - well, as long as they're between the ages of 18 and 45. 

And with regard to Bright Pink teaming up with the Kentucky Derby SURVIVORS Parade this year, I find it odd and ironic that although your 'specific focus' is with 'YOUNG women' - Bright Pink is accepting funds and donations on behalf of the 140 survivors participating in the parade to which many are clearly over your age bracket of 45. Why would you welcome funding for ALL ages when your specific focus is on YOUNG women. Such a mixed message and disconnect in my opinion, wouldn't you agree? But, in case you're unclear, here is verbatim, what is documented on the Kentucky Derby website:

Kentucky Oaks 140 Survivors Parade

Thank you for nominating and sharing your survivor’s story, voting for your favorite and most inspirational story, and for donating to Bright Pink on behalf of your favorite nominee. Your participation and your donations will help to educate, support and empower young women nationwide in prevention of breast and ovarian cancer. You can still donate to Bright Pink, now!

So my hope, is that in the future, Ms. Avner will consider opening up prevention, awareness, camaraderie and advocacy for ALL ages of individuals that is inclusive of both genders. I would like to think that the main goal should purely focus on saving lives.

In terms of my own journey as a 3-time survivor, it has been a unique experience and there are no organizations to date that focus on that, which I am fine with. I am a medical anomaly to not only the breast cancer community but to several teams of doctors. I already don't fit into a group so I continue to reach out to groups that reciprocate support in spite of my uncommon path. And as you so politely stated, I do deserve an organization that can best serve my needs and clearly I am not welcomed at Bright Pink. And thanks for your willingness to help facilitate introducing me to another organization "equipped to support me as a survivor" - but I believe I can handle this independently as this ain't my first breast cancer rodeo!

It is also transparent that Bright Pink is simply not an organization for this 'hereditary, 3-time, breast cancer survivor.' I had hoped that I could reach out to Bright Pink personally as well as, stand behind this organization on behalf of others in need, but it is clear that it is simply not a fit for me or many others. So, best wishes to you all with your specific focus, but this gal is moving on.

Lastly, if you'd like to find out more about my 'unique journey,' other organizations, films and individuals, I would welcome you to visit my blog at http://cancercancerbo-bancer.blogspot.com/. Here, you will also find my own campaign and education for my 'breasties' of ALL ages on my blog for their reference so they can make the best decision for which types of organizations best fits their needs. Oh, and you'll also find our correspondence on there as well, because as we all know and as Bright Pink states, 'Knowledge is Power!'

 

Dee Anne Barker, M.A.

Nothing But Blue Skies

Cancer Center of Santa Barbara: Walk. Run. Donate.

If there's one way to give back this month, it should definitely be to your local cancer center!

I've been treated at 2 cancer centers over the past 20 years and with this last cancer diagnosis (I emphasize LAST!), I was beyond fortunate to have had amazing care from the Cancer Center of Santa Barbara. From the front desk gals, to the librarian, the 'Wig Guy,' the wonderful chemo nurses (AKA my 'Purple Angels'), my brilliant oncologist Dr. G., the snack lady, my hometown Physician's Assistant, to the financial assistant counselors and the uber kind, nurse navigator Tammy (AKA, my nurse 'GPS'), a cancer center can become a second home to a patient and their family. I know it was for me.

I actually looked forward to going into the CCSB (minus the chemo!) because of the remarkable amount of care that I received. Everyone knew my name and we were often greeted 50 feet away from the reception desk with "Oh no, here comes trouble!" I'm telling you, these people go beyond their job descriptions by showing selflessness, compassion and human kindness. A place where a patient like myself can feel 1000% support and emotionally safe. And oddly enough, one of the most positive places I could turn to during the past 2 years.

So, in light of my own PINKTOBER campaign this month, I highly recommend that you consider putting your pink dollars into your own cancer center community. A place where patients like myself can attend art classes, yoga, pick out free scarves and wigs and a place that assisted me in accessing nearly $35,000 in grant money to pay for all of my infusion treatments in 2013 when I personally ran out of funds.

So.... Give back. Give local. Give now. And while you're at it, consider contributing to my cancer center's  Walk - Run this weekend in Santa Barbara; a great cause indeed.

Bowling 4 BOOBIES!

That's right, you heard me say BOOBIES! And in keeping with this month's theme of introducing you to some great warriors, organizations and causes, this one is a must donate, must go event!

So listen, this fundraising event is happening this Sunday in L.A. and I was slated to be on the 'Boobie Bowlers' team but because of various life and medical events, our team is on hold until the next bowling event!

But hey, you can still go and show your support for this uber fun and meaningful event; an organization close to my heart that provides financial assistance to local women fighting and living with breast cancer. Because, as I've said before but will say it again, this breast cancer gig can be expensive. With bills like $65,000 for a hospital stay, $1,000 anesthesiology payments, $15,000 per chemo treatment every 3 weeks, a post-chemo-session Neulasta shot that was $3,000 for 6 treatments and $9,000 Herceptin treatments every 3 weeks for a year! It adds up. So, help a girl out by either donating online or by showing up for this awesome bowling event!

STRRRRIIIIIIIKE!

Pinktober!

As I marinate in the pro's and con's of Breast Cancer Awareness month and all of its pink glory, I internally struggle with how to make it more about people vs. spending some greenbacks on a pink cuisinart that has yet to find me a cure. And as my sister Kim and I often joke around with our 'Pink, Pink you Stink!' mantra, I have decided to shift my efforts this year from raising funds that have NOT found a cure for breast cancer to raising awareness about some pretty awesome warriors and causes. So, stay tuned during the month of PINKTOBER and I promise to deliver an ample amount of very groovy peeps, tributes and fabulous events that I know you can stand behind and appreciate. Because the bottom line is that I am beyond weary of this disease, people dying and no cure in sight! Instead, let's all simply give some well-deserved salutes where needed and cross our fingers that all of that pink paraphernalia might actually buy us what we truly need - a cure.

P.ink Tattoo Day!

Picture it, 10 breast cancer survivors, 10 tattoo artists and 10 healing hearts. Sounds AWESOME to me! And all because of one uber inspirational breast cancer warrior, Molly Ortwein.

Fast forward a year and a breast cancer diagnosis later and there's a new gal in town and a very cool organization called Personal Ink (P.ink). Ready to pay it forward, Molly and her crew over at P.ink are sponsoring and fundraising for their first PINK TATTOO DAY being held in New York City on October 21, 2013 at Save Tattoo Studio. Her mission: to "help turn something painful for breast cancer survivors into something beautiful." How awe-inspiring is that? Because let me tell you something, when the 'old girls' go and the 'new girls' arrive, the process is not such an easy one. It takes time. It takes acceptance. It takes therapy (AND a rockin' tattoo!).

So, when I first saw Molly's mission to assist fellow survivors feel better about themselves through beautiful body art, she had me! And although I'm medically unable to participate for their first fabulous event in the big city, I at least wanted to spread the word on how you can personally make a difference in someone's healing and life.

Here's what to do... Go to their indiegogo fundraising page for Pink Day 2013 and make a contribution towards their $25,000 goal! There, you'll see a very moving video and 2 clicks later, you've just made a huge difference in the often challenging journey following breast cancer and a mastectomy. It'll make you feel good for days! There's numerous levels of tax-deductable donations that you can contribute from $10 - $5,000 and they'll even throw in a few freebies for you.

So, do something good, click on over to the fundraising page right now but don't forget to keep up with them on Twitter or their beautifully curated P.ink Pinterest page for a dose of inspiration.

...SAID NO BREAST CANCER SURVIVOR - EVER!

Over the past 20 years, I've been irked, I mean privy to many comments from others and have had the privilege of hearing how other breast cancer survivors deal with the benefits of cancer! Some of these thoughts and comments are those I've heard, those I've experienced and those I've read from other warriors. Let's take a peek, shall we?

"Gee how I just love all the side effects from chemo and meds" SAID NO BREAST CANCER SURVIVOR - EVER! It's like having the worst flu of your life - for 1 year! 

"Yes, I just love my new 'girls' - how lucky am I to have had a boob job?!" SAID NO BREAST CANCER SURVIVOR - EVER! While it does sound exciting, try laying on your stomach, on a hard or soft mattress with these things!

"Being bald is such a cool hair style to rock!"  SAID NO BREAST CANCER SURVIVOR - EVER! Until you're made fun of by a mom and her four kids in the parking lot of Trader Joe's, not such a rockin' moment in hair history and so not a self-esteem booster.

"I just love all of this attention I'm getting!"  SAID NO BREAST CANCER SURVIVOR - EVER! Are you kidding me? Someone once said that to me and I about lost my sh*t!

"Well, maybe getting chemo will finally help me lose those extra pounds!"  SAID NO BREAST CANCER SURVIVOR - EVER! Please know that the only reason we lose weight is that we are so damn nauseous that we can hardly eat a morsel of food. I personally survived on water, 1/4 cup of mashed potatoes and 2 crackers on any given day. Do you know how few calories that is? 

"I so love that I get to take Tamoxifen for the next 10 years!"  SAID NO BREAST CANCER SURVIVOR - EVER! I am now in my second menopausal stint and have gained 30lbs! WEEEEE!

"I'm just going to make this the most positive experience in my life!"  SAID NO BREAST CANCER SURVIVOR - EVER! Yeah right! While thinking positive is a common motto for many, it doesn't mean that this gig is still not chock-full of the most challenging and scary experiences. Positivity is just a bonus that we all dig down deep for.

"I'm so glad that it's only breast cancer!"  SAID NO BREAST CANCER SURVIVOR - EVER!  Bwah Ha Ha Ha Ha Ha Ha Ha Ha!

"I've always wanted to wear a wig!"  SAID NO BREAST CANCER SURVIVOR - EVER! FYI, they're hot, uncomfortable and itchy-scratchy on a bald head! You try it while being bald and get back to me on this one!

"I'm not afraid to die!"  SAID NO BREAST CANCER SURVIVOR - EVER! Let's get real here - we're all afraid to die. We know that this is a possibility and a reality, but we're just not ready to die yet!

"Having cold breasts during hot weather is so awesome and convenient!" SAID NO BREAST CANCER SURVIVOR - EVER! Unless you need to help chill a summer salad or a six-pack, the implants are just that - COLD!

Why I Cry?

Me & Kathy Ireland

Unexpectedly, this fundraising breast cancer event threw me for an emotional loop and I felt as if I needed a life raft the second I met the sponsor's daughter, Kathy Ireland. With my initial intention of simply thanking both she and her mom for such a wonderful event and cause - The Barbara Ireland Walk for Breast Cancer Research, I barely uttered my name to Ms. Ireland when I felt tears starting to roll down my cheeks. "Hello Kathy, my name is Dee Anne and..... (oye, here come the tears!)....thank you so much to you and your mom for this wonderful event....(damn, more tears!)... so sorry....I'm crying... please, if you could just tell your mom thank you....(geeze, more tears?!).... I was diagnosed with my 3rd breast cancer a year and a half ago (Really?! More tears?)..... and....." (thank goodness, she started to speak so I could get it together!) "How are you doing?" she asked with a very present and compassionate look. "I'm OK, thank you. Again, if you could please thank your mom on my behalf....(freakin' tears!)... and thanks to you too." We hugged, stared at each other's faces and eyes for a few extra seconds, hugged again, snapped a quick pic and then parted ways.

Ah! Why did I cry? Not like I was diagnosed yesterday....unexpectedly....for the first time. This was round freakin' 3 of the 'Big C!' What was wrong with me? Get over it, I thought! But my emotions were colliding inside of me like the perfect storm.

But really, what is there to get over? Will I ever be over this crazy disease? I feel forever changed and like a fish out of water. I don't know up from down sometimes. What's normal? How am I supposed to feel? How am I supposed to act? What do I say for the 1000th time when someone asks how I'm doing but I can tell doesn't really want to hear about it because it's too painful for them. Oh, I'm so tired of saying how tired I am. Should I minimize my feelings to spare others instead? Or, do I just say that I'm feeling great and beyond excited that I'm finishing my treatment next month as everyone expects me to say, even though I'm not? But I kind of am. But not really. I'm just not so sure how I feel.

All I know is that there are some damn good people in this world like Kathy Ireland, her mom Barbara, our friends Sydney and Susan who we went out to cheer for this morning and all of the other walkers with their pink shirts on, bald heads and 'Team Jani' on the back of a group of black shirts.

I cry for me. I cry for them. I cry for the ladies (and men) who will be diagnosed on Monday. I cry for the 39,000 plus woman (and men) who will die from breast cancer this year alone. I cry for Lisa Lynch,  a woman whom I've never met but one who took her angel wings on Monday in her 30's after being diagnosed at age 28. I cry for my Aunt Charlotte and my Aunt Henrietta. I cry for Gammy, my partner's sweet grandmother. I cry for Kelly and all of the 'Angel Girls' that all passed away in their 30's when I was first diagnosed at 31 myself.

But as I shed my tears, I also salute the many warriors and organizations determined to find a cure like the Barbara Ireland Walk for Breast Cancer Research. I celebrate Ann Marie of Stupid Dumb Breast Cancer who refuses to stay silent and hide her pictures of her scars on her Facebook page. I honor the Cancer Center of Santa Barbara and all of my 'Purple Angels,' staff, nurses and Dr. G. I applaud the Busted Foundation for their fundraising efforts to support breast cancer patients. I bow to TalkAboutHealth for their online support to help people like me.   I praise too many people to list here but whom I will try to mention and honor as time passes.

So that's why I cry! So what. Let's just find a cure!

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