Jill's Wish is My Wish

Logo Courtesy of Jill's Wish

Before Jill's Wish, I learned of this remarkable warrior via Twitter as I was laying in bed recouping from another chemo treatment.  I came across her video that to this day, has had such a lasting impression on me. I was immediately awe-struck, not just because of Jill's beauty, grace and elegance, but because of the tenacity, persistence and fortitude of this metastatic warrior. So then it began, the journey of following her journey, which, is why I simply had to feature her non-profit Jill's Wish for this month's Pinktober.

And in case you missed her raw and candid beauty in the 15 min documentary,  The Light That Shines by Sue Bryce, acclaimed fashion portrait photographer and videographer, you must take the time to watch it now. Because trust me, you will be impacted in the same way that so many thousands have been by her message and her essence. 

Even more impressive has been Jill's pay-it-forward and give-back mission to spread her message of strength, love and joy in the midst of her own personal health challenges. Between hospital visits and treatment, she has appeared on several T.V. spots, morning shows and at conferences saying that if she could help "just one person" then she could "die a happy person." 

Wow. What?!

Of course there is more, which is again why I wanted to feature her on my website and blog. And like me, she has endured the financial strain of cancer which is why one of her biggest messages and fundraising efforts is to help others in need. Bingo, she hooked me yet again!

Fast forward to a few days ago when I read on her facebook page that the 'beast' (as we both call it) is coming at her in full force, leaving her with few treatment options. My heart simply sank. But knowing Jill, she is still forging forward with both grace and courage as she attends to her current health challenge. With her wonderful mom and amazing husband, Bart by her side, my guess is that she is still giggling her way through yet another serious phase of her life.

So, with that, please take some time to learn more about this amazing warrior and then immediately donate any amount that you can to her cause that is so close to her heart and of course mine.

#GiveItUp4Mets

Click the picture to donate!

That's right, you heard me, I'm here to tell you to #GiveItUp4Mets! Why? Because this is the real killer of breast cancer which gets little funding out of this month's uber-Pinktober. And in case you didn't know, let me remind you of some formidable stats and of the Elephant in the Pink Room...

Picture courtesy of METavivor

Stage IV, Metastatic Breast Cancer (the transference of malignant or cancerous cells to other parts of the body by way of the blood or lymphatic vessels or membranous surfaces) is how men and women die from this disease. And unfortunately, nothing has changed much for this group of people as still, 30% of those originally diagnosed with Stage 0, 1, 2 and 3 will progress to Stage 4. Another alarming stat is that after someone is diagnosed with Stage IV breast cancer, life expectancy for this group is 18 months to 2 years which translates to my sisters and brothers out there dying of this disease every 14 minutes. And if you knew someone that died from breast cancer, this is why and how they did. 

Is it starting to make sense now? Difficult to swallow I know, but this is information that we all need to have tucked away in our minds and hearts to truly comprehend this disease.

So, please, I am strongly encouraging you to consider something simple that you can give up in honor or in memory of those affected by Stage IV, Metastatic Breast Cancer. Here's how... take the money that you would have used for a coffee, a mani/pedi, a lunch out, a pizza, a car wash or a movie and take those greenbacks and donate them to METavivor, one of the few organizations out there funding research for this stage of BC!

THEN, and hear comes the cool part... Take a selfie picture or selfie video of how you will #GiveItUp4Mets and the amount that you donated to METavivor. Send us your creative and awesome selfie over at Cancer, Cancer bo-Bancer's new website. Be sure to tell us who you gave it up for (in honor or memory of someone or for a future someone) and we'll put it on our website. Here's mine! - I gave up a pedicure (yep, doing my own!) and gave those dollars to METavivor. So, keep the selfies coming our way, keep donating and by all means, keep caring about someone with or about to hear the news that they have Stage 4, Metastatic Breast Cancer.

I also encourage you to watch this short video from METavivor about Stage IV, Metastatic Breast cancer. It will change the way you think about breast cancer - I guarantee it! Then, take just 5 minutes and one click to make a donation of any monetary value to METavivor. 

Every. Single. Dollar. Counts!

Pinkwashing: The Truth Behind the Sale

I think Elizabeth Taylor may have summed it up best when she said: "I fell off my pink cloud with a thud." And to that I say, "Well said Liz" because that's exactly how I feel.

Now don't get me wrong, I do have adoration for the color pink, own several pink shirts and blouses that are hanging in my closet and really do think that the singer Pink is quite talented. But when it comes to breast cancer awareness month and all the pseudo fundraising and Races for the Cure going on out there, I find myself getting more anti-pink. It even makes me think of what my sister used to say when we were younger - 'Pink, Pink You Stink!" And to her I say, "Right on, sister!"

So, first let me help you understand the pink underbelly of this famous and mass-marketed month of Pinkwashing.

Pinkwashing [verb] 1. The act of using breast cancer to guilt consumers into buying a product which, if it had not been for the advent of aiding the cure for cancer, they would not have bought. 2. the use of breast cancer by corporate marketers in which companies promote their products with claims to donate a percentage of proceeds to the cause

My definition? 1. An out-of-control lack of cause marketing where funding typically goes to more mass marketing and less funding goes to actual research to find a cure.

There. I said it.

So, now let me illustrate a couple of experiences and stories that will assist you in not only understanding Pinkwashing, but help you make some informed decisions to keep you abreast (pun intended) the next time you're standing in front of a pink endcap.

Today, I was walking in our quaint, beachside downtown area when I saw the sign above. Curious of course, I walked past the shiny and beautiful display of pink items for purchase and inquired about the 'Breast Cancer Research' donation statement. Three sales clerks in this high end boutique paused with great silence when I asked where the funds earned from their Brighton sponsored items would be bankrolled? Silence. Crickets.

Finally, all three of the ladies stumbled with responses such as "Uh, I don't know but let me see if I could find out" and "To breast cancer research" when suddenly, one of the clerks quickly departed the area while the other one just looked down. Finally, my inner Sagittarius couldn't take it any longer and I said rather firmly, "You should really know where those funds go if your store is selling them." Met with silence yet again, I launched into my Pinkwashing definition and my "I'm a 3 time breast cancer survivor" spiel before spinning around and leaving the store while the remaining sales clerk reached her hand out to pat my arm to say "I'm soooo glad that you're still here." Ok, I gave her an A for effort.

Not stopping at this experience, I came home later today and did what any cancer advocate would do - I Tweeted Brighton, inquiring about their #PowerofPink campaign and asked them where they donate those funds to from the accessory purchases. Still no answers and 6 tweets later, I got a cute little red heart icon and a "We'll follow up with that store. Thanks for letting us know." So, of course I responded and included the 'Pinkwashing' hashtag (hey, they included their #PowerofPink hashtag in an earlier tweet. What's fair is fair!).

One last story, my breastie, Ann Marie Otis over at Stupid Dumb Breast Cancer told me that she had a friend back in New York that saw a pink display and inquired as I did without any answer. Still bothered by the lack of information, she called back to the store to inquire yet again, when she was told that the funds were being donated to 'Various Breast Cancer Organizations' and in particular, St. Judes - 'A world leader in finding cures and saving children with cancer and other life-threatening diseases.' A credible organization and cause for sure but hardly related to breast cancer.

So, with that, I'll leave you with a couple of suggestions for the next time you find yourself in front of a pink blender, a pink fracking drill bit, a ride for a cure dealership or a pink endcap in your local grocery store. First, inquire about the donation and funding resource and their cause marketing. Second, see what those funds are actually used for. And third, consider scientific research or patient funding as a place to put your money. Or, visit Cancer, Cancer bo-Bancer and choose one of our 4 breast cancer organizations that we're featuring for this month.

Now get the 'frack' out there and help us find a cure.

Cancer Cancer bo-Bancer is LIVE and just in time for Pinktober!

www.cancercancerbobancer.com

After weeks of planning, thinking and more thinking, I've finally resolved myself to the fact that I needed to move Cancer, Cancer bo-Bancer (CCBB) to the next level - a website with a cause. Why? Because I want to do something about this disease in terms of research, finding a cure and supporting others out there doing amazing work.

Click on over and take a peek at what we have for this year's Breast Cancer Awareness month and as you'll see once you're there, the big push for me and my CCBB Tribe is our #GiveItUp4Mets campaign to assist in finding a cure through fundraising for Stage 4, Metastatic breast cancer with our co-advocates and research organization METavivor. This is the root of where we need funding in order for research to be successful and most importantly, get closer to a cure or at least a viable treatment protocol for Stage 4/metastatic BC. 

I'm also featuring one of my best breasties, Ann Marie Otis from Stupid Dumb Breast Cancer and her Bravery Bags cause so be sure to check that out. Additionally, donate and learn more about Pink & Blue the movie and Jill's Wish to financially support patients - two other causes that I'm backing for the entire month of October. Just know that literally, every dollar you can donate, counts and collectively adds up to great outcomes for both research and support services.

We're also uber excited about the organizations that we've chosen for the month-long campaign but know for sure, there will always be a cause for you to put your money and time behind! And, if you want your organization to be featured on the website, please contact us and tell us about your cause.

Lastly, I can't thank my CCBB Tribe enough for their dedication, love and support of this project and of me. I couldn't think of a better village to surround myself with and I count myself beyond lucky to have each of them in my life. 

So, with that, go take a peek and tell us what you think? What you'd like to see on the website? And what your favorite inspirational word is on our Warrior Jewelry page.

Now let's go find a cure!

Pinktober or Bust!

Excuse the pun. OK, forget the pun. Let's move on to the real purpose of this post which is Breast Cancer Awareness month that is literally peeking at us from around the corner.

With each year as Pinktober comes and goes, I find myself full of assorted sentiment about the month that continues to show up with more shades and hues of pink than I ever knew existed. Then the gamut of my emotions start to erupt and range from irritation surrounding the pink culture, guilt for the other cancers and diseases out there that need equal attention, gratitude that it's on the forefront of so many minds yet anger towards the lack of funding to find a cure for this disease and especially Stage 4/Metastatic BC that continues to steal lives from us on a regular basis.

So, with this entire spectrum of emotion surrounding Pinktober, I have been in serious contemplation about what I can do. One person, one blog, one survivor and one warrior who has made it through 3 rounds of this disease in the past 20 years. It must mean something right? What I need to do with all of this is the question that continues to occupy space in my brain and heart.

With nowhere to turn, I did what any survivor in my world could do, I reached out to one of my feisty breasties, Stupid Dumb Breast Cancer's Ann Marie Otis and proposed a plan, outlined it, and came up with a full month's Pinktober agenda. And by agenda, I mean a serious yet simple strategy to move closer to a cure. And of course she said a thunderous YES! In fact, her first line to me was "I think I love you!" Well, ditto to her and the blueprint we came up with for Pinktober 2014.

But just to bring more light to the overall picture here, we breasties and families out here are well 'aware' of breast cancer so may we please move on? Let's move past the pink purchases and take it to the next level shall we?

And by the way, not a day goes by where we are not reminded by this disease. You may see that we are out of treatment or have our hair back, but the scars are still there: some on the surface and some you simply can't see, they run too deep. We are often going back in for redos on our reconstruction, we continue to contend with daily fatigue, joint pain, the one nipple look, half a nipple, no nipples, tattood nipples (yes, I am saying the word nipples repeatedly and for a reason!) and weight gain due to meds. So please be self-assured that 'awareness' is ALWAYS on the forefront of our minds.

So, this is why we're done with the whole awareness gig and are ready to bump it up a notch - finding a damn cure. So, put your efforts and money where it matters most my friends - into research and support. We've lost too many beautiful souls to this disease and several over the past few weeks and I for one, am starting to get get pretty exasperated over this fact. Don't get me wrong, I am VERY grateful to have kicked breast cancer to the curb 3 times in 20 years BUT, we need to move past not wearing our bras for a month to increase awareness but focusing our efforts on funding quality research and organizations out there who are working with limited bankroll in order to find us a cure. Done. End of lecture.

Oh, one more thing, please stay tuned and hang tight until October 1st. We'll tell what to do, how to do it and where to donate your hard earned cash. It'll be that easy.

In the meantime, I leave you with this funny yet real quote that continues to be my most popular blog post to date - "Yes, their fake, the real ones tried to kill me!"

Enough said. Here we go.

The Passage to Nirvana

As the Buddhists believe, Nirvana is a transcendent state in which there is neither suffering, desire, nor a sense of self, and the subject is released from the effects of karma and the cycle of death and rebirth. It represents the final goal of Buddhism.

In a thesaurus, the words that appear for Nirvana are heaven, awakening, bliss, tranquility, peace, serenity, joy and cloud nine. 

I like both. 

And, as someone who has knocked at death's door three times now and when my own time does arrive, I can only hope that I am welcomed into this state of Nirvana with eternal joy and tranquility. 

But why is this end-of-life so heavily on my mind? Oh, so many reasons...

Aside from my own thoughts on this passage of time in my life, I have been sadly reminded these past two weeks about the short and precious cycle of life and death. My breasties that are out there in the fight of there lives, the breastie who just took her wings last week and now the untimely death of a young man. A 21 year old soul that took his wings way too early.

As many of you know, my fave chemo nurse Martha (head Purple Angel) has always been a source of centeredness and joy in my life. But unfortunately, she is the mother of the young boy (Patrick, Pat, Patty Cakes) that entered Nirvana a mere two weeks ago. A boy so full of life and laughter that he brought hundreds of people together to honor his short life and beautiful, vivacious spirit that brought breath and light into so many other lives. And as he was returned to the sea Friday on a beautiful, sunny afternoon, more than 40 fishing boats circled his final resting place as his mom Martha released his ashes into the sparkling Pacific. A place that her son spent much of his time throughout his brief life, surfing, fishing and swimming and now the gateway to his Nirvana.

Death as we understand it here, is a complex process and passage. And those left behind are left with a heavy heart. Is this suffering? Is this Buddhism at its core? Or is it simply a group of words found in a dictionary that describe our final passage? Whatever the case, I personally, am left with a keen perspective yet again on how precious life is and my purpose here. What now? What road do I turn towards? What's my unfinished business? How can I make a meaningful impact in other's lives? What's my next 'set' as Patrick often said? What's your next set? So many questions that are swirling in my mind and heart. All I know for sure right now, is that I am left with another set. One of numerous valuable lessons that I have learned from Patrick and his untimely passing.

So now a final verbal shout out and 'paddle out' to Patrick, a soul who is helping us all figure out our own passages to Nirvana and the invaluable lesson that we will always have one more set to play.

The Joys of Post-Mastectomy Swimsuit Season

Helllooo Summer!

Brace yourselves everyone, swimsuit season is definitely upon us and I've been trying to avoid it with great fortitude, but it's no longer an option as I am gearing up for a weekend on a lake with friends. Phooey.

In less than 4 weeks, I'll be heading to a lake cottage in Eastern Canada for a mini-reunion with some dear friends. And while all I have been daydreaming about are long walks along the water's edge, evening happy hours and laughter, one of my friends e-mailed us all about her excitement of getting her bathing suit on for a swim. $%&#!@*!

How could I have forgotten this part of the trip? My mind was solely focused on friendship, meaningful conversation, fun cocktails on a porch and reminiscing. That was my fantasy anyway, until my friend Barb, who is a tall, blonde drink of water from chilly Minnesota mentioned the whole bathing suit, can't-wait-to-go-for-a-swim conversation in an e-mail. Thanks Barb!

Ugh.

Not only have I not worn a bathing suit out in public in the nearly 3 years since this whole cancer gig #3 reared it's ugly head, but my 'Tamoxifen 30' has kept me far away from the swimsuit sections in all stores. On top of that, the New Girls aren't exactly complete yet and a tad off balance, so now what?!

I've been combing the internet on all the mastectomy bathing suit websites in the hopes of finding that perfect fit that flatters the New Girls and hides the scars, but so far, no luck and I'm running out of time! From Lands End, to Hapari, most of these gals don't exactly look like they've been to hell and back in their Sports Illustrated-esque swimsuit shots. Opposite in fact. With pictures of young women leaping across the sand and bathing suit categories such as 'silicon illusions' and 'secret pockets,' I'm not exactly finding anything out there for this soon-to-be-swimming-lakeside-gal.

Plus, I don't need to be stuffing any chick fillets into my bathing suit top, or wearing a summer turtle neck style suit. I have implants. Check!

I merely need a bathing suit that doesn't show the imbalanced left 'Girl' (Trixie - she's a trouble- maker for sure!) and something that hides the scars along the edge of my left armpit. Is this so much to ask for? Geeze. Is there not a tankini that comes without the fillets?! I have those already! Just give me a swimsuit that covers all the necessary and critical parts without looking like I'm wearing something to cover up something and a suit that doesn't come with an instruction manual.

So here I go, out into the brave, cold, cruel world of bathing suit shopping. And as my mother-in-law wisely said, "Even in the best of times, it's the worst of times"

Caregiving: An Exhaustive Endeavor

Having recently been in the reverse role as a caregiver for just the past 3 weeks, it's given me much food for thought on this subject. Which is why I have been feeling the need to bring this critical aspect of the cancer process to the forefront for another and much needed conversation.

As I reflect back on my primary caregiver over the past 2 years, I have come to realize that because I was in my own living hell of pain, nausea, depression and fear, I couldn't see the signs that my own caregiver who was cracking and breaking right in front of my very own eyes. The only two things I recall when we were halfway through my third breast cancer journey was that she said "I feel like I'm breaking" - so, when my mom came to care for me for a week, my partner Hilary melted in her arms and just started crying as she walked into our home. This should have been a major warning sign for me as she rarely cried. But because I was also crying on my mom's shoulder at the front door, I was in no emotional shape to recognize that Hilary was at the end of her rope and I hadn't even started chemo yet.

Extreme fatigue, fear, depression, hopelessness and many sleepless nights are what she lived with on a daily basis for a year and a half. Fearing what she thought was my imminent death, my partner was barely holding it together and little did I know or recognize this. I could comprehend that it was a tough role to be in, so, I made attempts to rally as many people around me as possible in the hopes of giving her a break: but I can see now that my 'babysitters' as I used to call them, were merely a bandaid on a gaping wound that needed stitches and major wound care. I additionally thought that if I arranged some grown-up 'play dates' for her like walks on the beach with friends, coffee outings, photography events here and there and dinners for us, that it would refuel her and aide in her healing process. But little did I know, she was too far gone by that point.

By the time chemo rolled around, we had already undergone 5 months of biopsies, numerous doctor's appointments, surgeries, second opinions, genetic testing and the whopper of them all, a double mastectomy. Always seeking the silver lining, we were both fooled into thinking that this wouldn't break us in some way or fashion at some point in time, but it did.

Almost 5 months into the black hole of chemo, Hilary had lost 30 pounds and was now wearing a double '00' pant size. She looked beyond exhausted and was commuting and hour-plus to work at a job that was sucking the life out of her. Then one day, she just collapsed on the floor sobbing hysterically at the end of my bed as she was checking in on me. I could hardly believe my own eyes. But, I managed to get myself out of bed, throw on some sweats and drive her to our old doctor who was only working at an urgent care 30 minutes away.

By the time we saw our wonderful doctor after sitting in the waiting room for 2 hours, she took one look at my partner and said "What in the heck is going on with you?!" My partner could hardly speak as she was now just sort of staring off into space, so I jumped in and told our doctor what she had been doing for the past 10 months. Beyond concerned and worried, she ordered Hilary to come back in 2 weeks to check up on her, lectured her to eat more and started her on some much needed meds. Neither one of us had ever taken any anti-depressants before as we were more of the meditate-and-heal-ourselves philosophy, but, she had already hit the wall and it was time to change things up - A LOT!

What we discovered a month later and a second collapse at my bedside, was that hindsight was certainly 20/20. What should have taken place during those 10 months was that we should have arranged more back-up caregiving for my partner. More than we could have ever imagined. And while I was receiving the support and care of so many, little support and caregiving was going to Hilary. Instead, people simply made comments about her weight loss and then immediately focused on me. And while I needed care as well, the person that really could have used some counseling, friendship and support was her! And it wasn't that she didn't have any, she simply didn't have the amped up or authentic level that she truly needed while other 'friends' told her that they 'felt' that I was going to die and that it was my time (insert waiving, angry fists in the air here!!).

Moral of this journey..... pay attention to the caregivers, be choosy about who you surround yourself with, don't be afraid to talk to other caregivers and reach out to a caregiver yourself, because trust me when I say, they won't be able to. It should also be a time when a caregiver visits their own physician to discuss what's on their plate and consider some medical help. And as for counseling, HA - it's an understatement to say that caregivers could use some sage advice and a listening ear from a professional and/or a support group. Heck, we're still in 'cancer counseling' so that we can process the past 2 1/2 years.

On the 'silver lining' side - I'm happy to report that my partner has gained those 30lbs back, is now working for an amazing company with fabulous (normal) people and is smiling once again. We have our weekly Tuesday check-in where we openly and honestly share where we are on this continued journey. But don't get me wrong, we still live with daily fear but it's significantly less now and we continually thank the universe each day for our lives, each other and another day to be grateful for. A new perspective indeed. 

In the end, there are resources (see below) out there for caregivers. And be sure to see what your local cancer center offers as many have several programs for both patients and their caregivers. 

In a nutshell, we are relieved and happy that we survived walking through the fire and are now better versions of ourselves. Thank. You. Universe.

Caregiver Resources:
   Caregiver Action Network 
   Cancer Care
   Cancer.Net
   American Cancer Society
   Rob Cares - Caring for Caregivers

 

Flashback Friday: Going Bald!

I remember this moment like it was yesterday! My hair suddenly started coming out in clumps so my lovely hairdresser Missy, came into her closed salon on a Monday to take it all down. I liked it so much better than the clumpy hairdo that I was definitely not rocking - really makes a gal look sickly! Weird, liberating and scary all at the same time. But that's cancer for you!

Every 3 Months...

As many cancer survivors and warriors will confess, getting a diagnosis and living through the day-to-day of treatment, surgeries and doctor's appointments, frankly, yanks one into the present. 'Living in the moment' is truly what we are obliged to do. Whether experiencing the angst that accompanies the cancer voyage or trying to get through the next 10 minutes of nausea while waiting for meds to kick in, living in shorter spurts of life is what's essential for our survival. Albeit a more positive and present way to conduct one's life, it remains a worrisome way to live.

Fast forward to post-cancer, post-treatment, post-everything when we're supposed to be smiling about that fact that "You're done with all of that, right?" - it doesn't stop there for those of us having experienced the cancer adventure. And even though most all the people around us think that everything is back to normal, fact of the matter is, it's not quite normal, but a 'new normal' as many of us claim.

For me, I've moved past living my life in 10min. segments and have now traded it up for living my life in 3 month intervals. Not a victimized or martyr-like statement, just a fact. Ask any of my breasties or friends having endured the Big C and they'll tell you the same thing.

My cousin Chris, for example, lives in 'Every 8 weeks' time frames as he goes to Stanford for labs and scans to make sure "it" is still gone. And while his teenage self doesn't really dig too deep with that time reference, his worrisome mom, Deidre counts those weeks down like an antique hourglass. .....2 more weeks.....1 more week.....labs....scans......trip to Stanford....see the doctors.....hold your breath......good news......sigh of relief.....head back home.....8 more weeks.

As for my every 3-months ritual, I live my life to the fullest 'in between' but still with great apprehension, until the next oncology appointment. I don't count the days or weeks like my cousin does, but I do live my life on a quarterly basis, always knowing in the back of my mind, that I'm getting closer to my labs and a trip to the cancer center to see my oncologist to ensure that my numbers are good and that my lovely Tamoxifen, that keeps those malignant cells at bay, is still working. .....1 more month....1 more week......go for labs.....laugh & joke around with my fave phlebotomist Lee....2 more days.....day of my appointment......back to the cancer center...... walk past the chemo room......get my vitals done......wait for Dr. G. to give me the news....sigh.....breathe..... smile......high five Hil......call my mom with the good news.....wait 3 more months.

Again, this is a more positive way to ensure living in the present, but make no mistake when I say, cancer is the gift that keeps on giving. Well, sort of.

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.

_________________________________________________________________________________________________

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

_________________________________________________________________________________________________

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

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.

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!

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.

Throwback Thursday: Tick! Tock!

"Time is nature's way of keeping everything from happening at once"

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.

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!

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!

Throwback Thursday: Scared As Hell!

The title of this post says it all. And I do, very much so, recall this day of going into the Cancer Center of Santa Barbara for my very first chemo. Smiles as usual, but underneath it all, I was scared out of my head about what was about to go down in my cancer history. Looking back on it today, I have come to realize that not knowing what lie ahead of me was probably a good thing. I mean really, who needs to know that they're about to sit in a chair for nearly 7 hours getting shot up with toxic, yet life-saving chemicals, have a severe allergic reaction to one of the drugs, and then go home to a chemo coma for the next 10 days without recalling hardly anything. Seriously?! Nobody needs to know that. And that my friends, is why ignorance is bliss!

Throwback Thursday: The Art of Doing Nothing

Having spent an excessive amount of time in bed over the past couple of years, I can now say that I truly know what it's like to have some R & R. Not exactly the kind of relaxation that I would recommend to anyone, but it is interesting how one can spend days and hours at a time doing, well, nothing really. I, for one, have always been a gal on the go but when you have no energy and are fighting nausea, the time I lingered here was actually quite peaceful and serene.

I didn't have the mindset or the focus for books or even movies, so I spent much of my time either on my iPad or simply staring out the window looking at the sun and the moon from my second story bedroom. I even began to relish the sound of wind and palm fronds waving back at me while I laid there for sometimes weeks at a time without ever going downstairs. A lot of time, a lot of silence, a lot of nothing.

As you'll see in the background, I made an inspiration board that sat on top of our little dog's crate that I created to remind me of life and people outside of my room and cancer. And when people started sending me tokens of love in the form of pictures, cards and keepsakes, I thought what better way to stay connected to myself and life. I genuinely treasured staring at my board of pictures, inspirational quotes, my past aunt's artwork, spiritual tokens and my dad's ashes in a leather pouch for many minutes at a time. It was often the first thing I looked at in the morning and the last thing I saw at night.  So, when you really think about it, it was time well spent. And in some strange way, I secretly wish for those days again - not of illness but of quietness, stillness and peace.

2014 Here I Come!

I've said it once and I'll say it again, Nothing But Blue Skies are ahead - at least that's my personal motto for 2014. And if I have to fake it 'til I make it, then that's exactly what I will do.

For one, I am admittedly thrilled that a new year has rolled around because for the first time since November 2011, I am not looking towards surgeries, procedures, treatment and all that goes with the onset of a cancer diagnosis. Perhaps I'm fooling myself, and it's just the Tamoxifen talking, but I don't think so. Because if there's one thing my parents always taught my sister and I, it's to persevere and so I will.

With my emotional provisions in place, I am digging down deep in an attempt to get my life back on track after a 2 year roller coaster ride. New digs - check. Daily meditation - check. Daily inspirational quotes - check. Green drinks - hope to check. Exercise - must check. You get my drift.

As for one of the most important intentions that I'm carrying over from last year, it is to continue to surround myself with good peeps. And by that, I mean my family and friends that uplift me and ones that I hopefully uplift in return.

Interestingly enough, I found a source of inspiration in a box that was unpacked just last night. It was a small book my mom gave me back in 1993 from Shakti Gawain - Reflections in the Light: Daily Thoughts and Affirmations. A book that provides inspirational messages and thoughts for each day and one that now sits on my nightstand. Even more poetic is the message that my mom wrote to me on the inside cover:

                To Yogi,
                Given with much love and gratitude. Know that once the seeker sets upon the journey, everything wanted and needed will                appear at the perfect and right time.                                          
                                                                                 Love, Mom

Isn't she so wise?! Perfect timing yet again! Thanks so much mom, your words mean the world to me as usual! And as I continue to strive to gain a 'new normal' and perspective in my life, I hope that you will also make some time for soul-searching as you look forward to another year and yet another opportunity to find some peace and joy in your own life.

As for me, I'll leave you with today's quote to keep you in the present even though we are all looking ahead to the new year. Gotta stay in the here and now, right?!

       

Happy New Year everyone! Nothing But Blue Skies.