Sunday, April 13, 2014

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


Wednesday, April 2, 2014

Is There Breast Cancer Age Discrimination?


Recently, I came across an organization that is doing some great work with regard to supporting patients and warriors, disseminating valuable information and even has a celeb tied to the organization as their spokesperson. 'On a mission to reach millions of women between the ages of 18-45...'  Well darn-it-all, I'm 50-freaking-3! But wait, I WAS 31 and then 36 for my first two breast cancer diagnosis, does that count?

Immediately, I must confess that I felt discriminated against and slightly disturbed by their age cut-off. I mean, even most job applications don't discriminate against gender, age, sexual orientation, ethnicity and the like. Why this? Why now? Why with breast cancer?

So, I did what any advocating, 3-time, breast cancer warrior should do....I wrote them, inquiring about this head-scratching cancer paradox. Furthermore, I saw that they were teaming up with the Kentucky Derby's Survivor's Parade this year to which one of my fave breasties, Jill Brzezinski-Conley is a nominee to walk in (please vote for her - she deserves it!), so I thought I would investigate the age issue a tad further. Now Jill falls well within their specified age range, but I did happen to notice that a few of the other nominees clearly fall out of the top of their age bracket of 45 which got me to thinking... will this organization not speak to or support these women as they partake in the parade? Will they be shunned because they happened to have been diagnosed past the ripe age of 45? Will they not receive the recognition that they so deserve? Will they not be given their parade gear because - ugh, cancer picked on them way too late in life? And even more importantly, what about my breasties that are beyond the 45 year age range that are terminal and in the fight of their life - will they not receive the respect that they've earned and should have?

Hmmmm.... maybe it's just me, but does any of this make sense to you?

So, now I'll see if this popular organization that I actually wrote 6 months ago inquiring about their wish-granting program, will AGAIN, ignore my inquiry and kick this 53-year old cancer warrior to the curb? Will I not receive, at the very least, a respectable response? I'll keep you posted.

In the meantime, let me switch gears and flip this annoyance around and refer you to some awesome, non-age-discrimination organizations and peeps who I know you will find supportive:

Stupid Dumb Breast Cancer
Talk About Health
Facing Cancer
Breast Cancer Social Media 
Healthline

Lastly, feel free to add an organization, group or any peeps that support ALL breast cancer survivors in the comments section. It's important for us to help each other during the experience of breast cancer and to band together, no matter what.



Wednesday, March 26, 2014

Breasties! Then & Now



Friends come to us at the most unexpected times and this friendship is no different. We met in the chemo room last year and soon realized we had much in common. Lorena, a spitfire in her own right, resonated with me from the second we met across the room, tethered to our chemo chairs and poles. Her spirit came across loud and strong! She had an obvious fire in her belly with her cancer-picked-the-wrong-girl attitude and an immediate bond was formed.

We have the exact-same line-up of surgeons and oncologists down to our second opinion docs. She's a repeat offender with breast cancer like me (her 2 rounds, me 3) and we both speak other languages. Most importantly, I knew that we both shared the gonna-have-a-knockdown-with-cancer mentality.

So, when we reconnected recently outside of the chemo room for coffee, we dove right in where we left off (minus the chemo poles!) a year ago. First order of business, our hair! I'm sure people in the coffee shop couldn't figure out why two gals hugged each other and then immediately started touching each other's heads. "Yours is so soft!" "Mine grew in coarse." "Mine grew in curly." "Mine sticks up!" "Mine has grey now." Laughing through it all, we sat down and were off and running. I even noticed that 3 different people sat down next to us but then quickly changed tables. We didn't care. We both looked at all three of them and then quickly returned to our own world and chatter.

In one hour, we managed to chitchat about several items on our mental agenda. Minus a few chemo-brain moments on both our sides, we jabbered on about our new energy levels (or lack thereof), nutrition, our achy joints from meds, combating fatigue, newly diagnosed breasties and the like. But mostly, we just connected about life, our immense gratitude to be alive and kickin' and how we need a damn cure for this disease. We talked about how we both know the statistics looming over our heads but how we both have chosen to ignore them.

The takeaway was that I walked away from my breastie-coffee-date feeling more like myself again having connected with my sister from another mister. Having chatted it up openly and honestly about how we're truly feeling without judgement and minimizing from anyone else really elevated me. We didn't complain, we simply spoke about the facts and how we'll keep moving forward in gratitude. In a nutshell, we collectively smiled with thankfulness for each and every day.

So, thanks to Lorena for your kick-a$$ attitude, your contagious rockin' spirit and for just being you. Note to self, must have more coffee dates with you!

Lastly, thank you cancer for this friendship; a definite silver lining with round 3!


Saturday, March 15, 2014

Let's Talk Tamoxifen!



Amid all of the humor and poking fun at breast cancer that I have thoroughly enjoyed, this is one aspect of the aftermath that I personally, don't find humorous at all. In fact, I often find myself between a rock and a hard place when it comes to the drug that is keeping me alive and free of future breast cancers. Between the side effects and the long list of pharmaceutical interactions, it's an ongoing balance of emotions based upon my daily physical wellness. No benedryl, no pineapple (which I just ate for breakfast this morning!) and no antidepressants. Seriously? Because that's exactly what one needs in this situation. I mean, as if I don't read labels enough, now I need to look at what foods, meds and herbs that contain estrogen.

And here's something that I know we can all relate to, those horrible commercials about meds that will help you sleep, lose weight, enhance your mood, etc. BUT, the 'Oh by the way' disclosures (insert your best commercial voice-over here) can really mess with your head... Tamoxifen may cause cancer of the uterus, strokes and blood clots in the lungs or legs. These conditions may be serious or fatal so be sure to seek immediate medical attention if you develop symptoms such as weakness on one side of the body, slurred speech, sudden vision changes, confusion, shortness of breath, chest pain or calf pain and swelling.

Really? First let me say that I have my dad's calves which have always been a little on the larger size. I also lose my breath walking up stairs and yes, my vision has definitely changed. As for the confusion, uh, helllooo, I had chemo! We're all confused now - but, that's a separate blog post. And as for the long list of side effects that have me searching the internet well into the night, I get it. Hot flashes - check. Weight gain - check (I like to call it the 'Tamoxifen 30!') Fatigue - check. Hair loss - check. Bone ache - check. Migraines - check.

But my point is this - many of us are taking this daily drug for at least 10 years, if not a lifetime, that may very well be a life-saver. So, there's got to be an emotional solution to my daily potion of life-saving medication. I've got to befriend my little white pills, be grateful that I even have the opportunity to take a substance that keeps me upright and above ground. So, gratitude it is.

I am truly grateful for my Tamoxifen, I am grateful that I can get up each and every day and function, I am grateful that my side effects are not debilitating, and I am grateful that I have other meds to counterbalance the extreme side effects when they hit me hard. Pure and simple, I am just so grateful.

So, in a word, 'thanks' Tamoxifen.



Thursday, February 27, 2014

Throwback Thursday: Tick! Tock!



That's for damn sure! And after clocking in nearly 60 hours in the chemo room, I can honestly and earnestly say that there were times when all I heard was the sound of this clock's second hand. Trying to keep up with the metronome rhythm in my head, I found umpteen ways to pass the time. Reading, napping, snacking, watching my infusions drip, staring at the clock, chatting and laughing with the chemo nurses, surfing the net, striking up conversation with fellow patients in the room and taking my pole for a walk every couple of hours were my usual habits. And if truth be told, I think we all could use a little down time every few weeks. Really, I think I'm on to something here. Maybe there should be centers where we can check in, at our own will, for let's say, 4-6 hours and be forced to do, well, nothing really. Minus the toxic drugs of course, I believe we could all benefit from some voluntary R & R. I know I did and although looking at this particular clock brings some not-so-fond-memories of my first chemo treatment to the forefront of my mind, staying in the present time is an important reminder that we don't have to be doing everything at once. Note to self.



Thursday, February 6, 2014

Throwback Thursday: Chemo Through the Eyes of a Child


To this day, this is one of my fave pics because a) I LUV this kid! b) I ADORE his mom! and c) It speaks volumes of what kids might think about cancer and chemo.

But this young lad Jeremy was no chemo rookie as he had watched his grandma finish her chemo for breast cancer from this very room just 2ish months earlier. He was not allowed in the room for my chemo due to his age but his wonderful mom 'Julie-Bunny' was and she had brought me love and flowers for my first treatment. So instead, Jeremy simply stood at the door and stared at me for numerous minutes with bewilderment and a reluctant wave.

Little did I know, he was asking my partner Hil "What is Yog doing in Grandma's chair?" Not, why is Yog in the chemo room, or did Yog have cancer too, but really, what was I doing in his beloved Grandma Zeb's chair?

Having worked with young children for nearly 30 years now, I get where they're coming from with the looks, the blunt questions and forthright comments "Did you loose your part?" "You have a shiny head." "Don't take your hat off." "Do you have the cancer flu?" "I'm gonna go now."  Kids seem to have a simple yet sophisticated way of getting to the point in a manner that most adults just can't seem to manage. They want to know the facts and nothing but the facts just like Jeremy did. He wasn't interested in my emotional well-being or how I was feeling about my very first chemo treatment. His mom was laughing with me, I clearly had a (fake) smile on my face, and was waving back at him with enthusiasm. Next topic. He simply wanted to know why I was bogarting his grandma's chemo chair. Boom. Done deal.

As I continued to watch Jeremy and Hil with great curiosity, my thoughts were all about the good
ju-ju that I had hoped was in store for me. With my lucky necklace, alkaline water, some spiritual trinkets and feathers, I felt compelled to help Jeremy understand what was going on but simply couldn't because I was tethered to the drugs and my chemo pole. Plus, I figured if this chair brought good fortune to Zeb then I was there to cash in on some of that luck; a chair that I coveted for a year and one that I felt slightly possessive of (I did have to relinquish it a few times - with hesitancy) but I did play nice in the chemo room!

In the meantime, I cherish this precious picture, that day and the sweetest face one could ever hope for during one's very first chemo treatment. Good medicine for sure! So, to that, I say a huge THANK YOU to my little red-headed pal - back atcha buddy!


Monday, February 3, 2014

Going Purple! World Cancer Day


It goes without saying (again), that purple is my fave color. But today, this beautiful color means even more to people like me and all of my breasties, as it is officially World Cancer Day! A day when you can show your support in so many simplistic ways like turning your Facebook and Twitter profiles purple! This alone can raise up to $1 million dollars for the American Cancer Society by going to the Chevrolet website and going purple for a day. I mean, how great is that?! But if you'd rather donate directly to the ACS and know that any amount you donate can make the difference in research for finding cures for cancer and saving lives, then simply donate here!

On a more individual level, which can mean the world to people like me, Lorena, Pammy, Marion, Nicole, Jude, Lisa, Jody, and Jill (some of my fave warriors and some who are in the fight of their lives!), then offer up a more personal touch.

I for one had friends do things like bring dinners to our house when I started eating again (thanks Kristy & Eric!), knit a cap for my cold and bald head (hats off to Kim & Miss O!), drive me to treatment (thanks Deb & Sam), mow our lawn - for a year! (again, many thanks Deb!) sit with me in chemo (LUV to Julie-Bunny, My Angela, Dr. Polito, Zeb, Sydney) and drive me to get a walker (Cheri, you're a rock star).  My list goes on and on so, be creative and make your own list for someone you care about. But most of all, be personal and show someone some extra LUV today! If anything, just pick up the phone to say hi and that you're thinking of them as cancer is a lonely journey.

Well, what'ya waiting for? Join me and millions in going purple today for someone you love in the midst of the battle, young children battling this dreaded disease, someone you lost to cancer and those that will be diagnosed this very day and will have to hear those three words that will change the course of their life forever, "You have cancer."

So, come on - go purple!