Pink to Black

October 13 is Metastatic Breast Cancer Awareness Day. The Cult of Perfect Motherhood blogger and Hear My Voice Outreach Volunteer Beth Caldwell writes about an event taking place in Washington D.C. Beth invites you to learn more and join next Tuesday. 

For a lot of women with metastatic breast cancer, October is hard. You might be surprised by that – with all that pink, you might think it’d be a time where we feel supported and hopeful that the focus on breast cancer might bring us a cure soon. But for me and many others, all that pink inspires only frustration and anger and despair, and this year, we’re planning to turn those feelings into action.Beth Caldwell

What many people don’t know about metastatic breast cancer is that there is no cure for it. Everyone who has it will die of or with their disease. Three out of 4 women and men (yes, men get breast cancer, too) diagnosed with metastatic breast cancer will be dead within 5 years, and the average life span from diagnosis is only about 3 years. Those of us diagnosed with metastatic breast cancer endure treatments that can rob us of our energy, our hair, our breasts, our fertility, and cause pain, vomiting, blisters on hands and feet, mouth sores, neuropathy, and a host of other horrible things. In sum, life with metastatic breast cancer is often nasty, brutish and short.

In addition, many people don’t know how little of the research dollars for breast cancer go towards metastatic disease – the kind of breast cancer that kills you. It’s only about 7 percent. That’s right: 93 percent of the research dollars spent on breast cancer go towards early-stage breast cancer–the kind that doesn’t kill you. Which is why we still don’t know how or why some breast cancer metastasizes, or how to stop it from metastasizing, or how to stop metastatic breast cancer from killing people. We’re spending 93% of our precious research dollars asking the wrong questions.

On top of that, those of us with metastatic breast cancer know that awareness is not a cure. When I was diagnosed with breast cancer and had to tell my then-6-year-old son, I started out by asking if he knew what breast cancer is, and he said yes. Even HE was aware of breast cancer. If awareness was the solution, 40,000 Americans wouldn’t be dying every year from metastatic breast cancer. Including me.

So, now that you know all this about metastatic breast cancer, imagine how we feel when we turn on the television or go to a store and see a sea of pink, knowing that the awareness won’t save us and that the vast majority of the money being raised isn’t helping us either. We see that pink ribbon and know that for those of us with metastatic disease, the pink ribbon will someday turn to black. Knowing all this, our anger and frustration and despair doesn’t seem so odd, does it?

But this year, we’re trying to do something about it. We’ve started an organization called MET UP, modeled on ACT UP – the AIDS activist group that helped change the landscape for people living with AIDS. We intend to demand change in the world of breast cancer, and we’re starting by organizing a protest at the U.S. Capitol on October 13. We’ll gather at 11 a.m., and at noon we’ll hold hands and lay down to honor the 110 Americans and 1,430 people worldwide who die every day of metastatic breast cancer. We will also be meeting with aides to members of Congress to demand that Congress direct the National Cancer Institute to begin collecting data on how many people with early-stage breast cancer later develop metastatic disease; fund more cancer research in general;, and ensure more federal research dollars are spent on metastatic disease, so that, like people with AIDS, people with metastatic breast cancer can live with their disease instead of dying from it.

We’d encourage anyone who wants to help save our lives to join us at the Capitol on October 13, to show the world what metastatic breast cancer really looks like. I truly believe that if we join together and make our voices heard, we can change the landscape for people living with metastatic breast cancer, and I hope you’ll join us in this effort! You can find more details about the event in D.C. on the Facebook event listing.

My Climb is a Gamble

Concluding our blog series for Beyond the BreastLesley Glenn writes about preparing for her climb of Mt. Whitney, which she’s attempting today (we’re rooting for you, Lesley!). She reflects on how the preparation has informed her approach to living with metastatic breast cancer. Take action with the Beyond The Breast Campaign.

As you are reading this, I am attempting my first climb up Mt. Whitney, the tallest mountain in the lower 48 at 14,505 feet.

The stats say that 2 out of 3 people who attempt the mountain on their first try, don’t make it.  I am going with two of my girlfriends. You do the math. All of us have been training equally.  Not one of us has an advantage over the other.  We each have the desire, tenacity and perseverance to conquer the mountain.  We each want our summit experience.

IMG_3340But what we don’t know is how each will respond to the high altitude. Or what weather system might be waiting for us at 10, 12, or 14,000 feet. No matter how optimistic, how much we have trained, or are prepared for this climb….

…It’s a crap shoot – something that is random, not based on skill.

All of us may summit, two of us, one of us…. or maybe none of us.


It’s just like stage IV metastatic breast cancer – the incurable breast cancer.

You’ve heard these stats.

  • 1 in 8 women will be diagnosed with breast cancer.
  • approximately 30% of all women diagnosed with early-stage breast cancer will go on to have metastatic disease regardless of treatment.

But do you know these figures?

  • Approximately 40,000 women and men die of metastatic breast cancer every year in the US, and this number has not changed meaningfully in 40 years. (1) Break this down to #110 daily.  Yes, daily.
  • The median survival from diagnosis with metastatic breast cancer is 2-3 years, and this number has not changed meaningfully in 20 years. (2)
  • About 24% of patients with metastatic breast cancer will be alive 5 years after diagnosis.(3)

Living with metastatic breast cancer is also like climbing a tall mountain.

It’s a crap shoot – something that could produce a good or bad result.

In other words, some of us might live a long life (summit). But statistics show most of us will die from the disease. (We won’t make it to the top.)


My climb is a gamble.  My life is a gamble.


Yes, I know…..I hear it all the time.  “Everyone’s life is a gamble.”  It’s true.  But the odds are more against me than those who don’t have a metastatic cancer diagnosis.

When I come back down off of the mountain, my hope is that I will be able to share with everyone about my summit experience.  But if I’m not able to, then I will share with you about my journey in trying to get to the top…..the challenges, the victories, the moments where I wanted to quit, and the junctures where my dream to summit drove me forward.

As is my  intention to share my journey in living with metastatic breast cancer.   The good, the bad, the ugly, the inspirational….the reality.

Lesley is a wife, mom, artist, writer and an avid hiker. Since January of 2015, she has hiked over 40 trails, and climbed up 10 mountains. She has been living with stage IV disease since May 2013, and is currently stable. She just turned 50 years old. Lesley also runs the #voicesofMBC blog and tells her own authentic story of thriving with cancer at

Stats: Special thanks to MET UP – MBC Exchange to Unleash Power for these statistics and being a voice for the metastatic community. You can find them here on Facebook.  

  1. Metastatic Breast Cancer Alliance Landscape Analysis (2014), p. 8
  2. Metastatic Breast Cancer Alliance Landscape Analysis (2014), p. 8
  3. American Cancer Society,

Refusing to Be Silent

Kahron Palet is a Hear My Voice Outreach Volunteer and the creator of this powerful video below. In the video, she shares her story about her diagnosis with stage IV disease and asks you to get educated and support research. Learn how you can support people living with metastatic breast cancer by joining Beyond the Breast and taking action.


Just Beyond Our Reach

Lori Tragesser blogs about living her life after a stage IV diagnosis and having hope for advances in research and the larger breast cancer conversation. Support people like Lori. Join the Beyond The Breast Campaign.

I never dreamed that I would be here…in this moment. My story…beyond my wildest dreams.

Breast cancer beyond my breasts.  When I was first diagnosed with breast cancer, I didn’t even know it was possible to have breast cancer go beyond the breast.  But on August 27, 2014, at 43 years old, I joined some 150,000 U.S. women and men in a journey beyond our control.


I am blessed beyond measure with the people in my life.  I am wife and a mother, a daughter and a sister, an aunt and a niece, a friend and a co-worker.  My husband and I are raising four teenage boys and a middle school-aged daughter.  Our lives are sometimes busy beyond belief, but they are everything to me.  My heart breaks for them.

When you are stage IV, you learn to look beyond what you can see.  We all have a timeline with no real numbers on it.  But when your cancer has metastasized, you are suddenly holding that timeline in your hands.  No numbers. Only an average of three years. What does that mean?  How long is that?  There is no time to waste.  Life is found somewhere beyond our doubts.

I have to live beyond my limits. This isn’t day-to-day life anymore.  With ongoing infusions and injections, my body changes.  Exhaustion hangs on my shoulder.  My stomach battles me at will.  Then there are all the other side effects that come and go as they wish.  But there still is so much I want to do and see. So I seek to find sustainability and balance for myself. I teeter totter between pacing myself through my treatments and doing as much as I can with my friends and family.

I found myself beyond scared.  I knew there wasn’t time to waste dwelling on “poor me.”  I wanted everyone to hear my voice. I quickly found that I was not alone. Our voices are being heard as the landscape of our prognosis is ever-changing. But sadly, approximately 110 of my stage IV sisters are still dying every day. We need more.  Research does continue to make remarkable advances in treatments, but they can only do this with more funding.  With good news always on the horizon, I don’t lose faith that the cure is just beyond our reach.

I never dreamed I would be here…with cancer beyond the breast.

Read more of Lori ‘s story on her blog, Thanks for the Mammories.

Dealing With Change After Diagnosis

From the moment she was diagnosed with inflammatory breast cancer, Adrian McClenney dealt with a rollercoaster of change. She writes reflects on her journey, including life after her diagnosis of stage IV. Learn how you can support people like Adrian through our Beyond the Breast Campaign.

I am a wife, mother, grandmother , sister and friend. On May 19, 2011, I was diagnosed with inflammatory breast cancer. My treatment regimen consisted of me completing 16 cycles of chemotherapy treatments, getting a bilateral double mastectomy and 37 radiation therapy treatments. I finished treatments in March 2012, which is when I was considered no evidence of disease (NED).


In July 2012 I had some issues with with my ovaries. After medical screenings, it was then suggested that I have a hysterectomy. I had the surgery and the surgery went well. I had a few minor complications after the surgery which delayed my healing. It can take anywhere from 6-8 weeks for healing after this particular surgery, but it took me about 12 weeks because of minor complications.
Being diagnosed with a deadly disease such as breast cancer changes your life  n ways you can’t begin to imagine.
I remember sleeping a full night sleep, which was about 7 to 8 hours. Now, I’m sleeping only two to three hours a night, if that and that has been going on since 2011. There are many things in life that happen completely unplanned (much of it we don’t even want to happen) but we adjust, regroup and keep pushing foward.
My daughter was in 4th grade when I was diagnosed with stage IIIB breast cancer. My son had just graduated high school and started his first year of college. I attended PTA meetings, football games, birthday parties, family trips, family dinner dates and just plain old mother and son time with my son. I feel like my daughter is being cheated out of time with her mom because I was unable to attend her dance practices, cheerleader practices, school events, family events, fixing her hair, shopping and so much more due to this deadly disease. I worry about my daughter more than anything in this world. No one can love her like me.
There are so many things that changed with my day to life especially my energy. Many things changed tremendously with my husband and me. He cooked dinner, cleaned our home, he did laundry and worked 60 hours a week at his job. I may be wrong for saying this but there are many days I would look at my husband and actually feel sorry for him and feel like he deserved better. I say this because there are so many days where I don’t want to talk yet along hug or kiss.
As months past I tried very hard to get my life in order. I would attend therapy treatments to help me move forward. The psychiatrist that I saw on a weekly basis felt like I was doing quite well under the circumstances.
Moving forward and healing quite well I was hit with yet another devastating blow. In July 2014. I was devastated when I was re-diagnosed with a metastasis of my original breast cancer diagnosis.  The cancer has now spread to my neck, chest wall and pelvic area. To hear those words made me very sad. My oncologist said to me, “Unfortunately Mrs. McClenney you will be doing chemotherapy for the rest of your life.”
Life as I know it has completely been turned upside down. At this time it is hard for me to even handle a simple load of laundry, get the mail, cook a simple meal or even drive my car. These simple things make me feel as if I have ran miles. Marathon miles.
No matter what I refuse to lose. I am tired every day, but it is my duty to fight like a big girl. I face all my the challenges with a smile. I have a family that needs me but loves me more. At the end of the day I am EXHAUSTED and I may not be the same but I refuse to not fight back. Some days the most I can do is shower and read; with those days, I feel as if I have conquered the world. If I could leave you with any words today it would be to know your family history and most of all know your body. And most importantly, you’re not alone!

Lost and Found: Passed Time and Gained Purposes From Early-Stage to Metastatic Breast Cancer

Long-time LBBC volunteer Caryn Kaplan reflects on what’s she’s lost and gained from her initial diagnosis to a re-diagnosis of metastatic breast cancer.Join Caryn in our Beyond The Breast Campaign.1036BC1E-98A5-493F-9CA2-70A82FC13EA7
So much time has passed since my first diagnosis of breast cancer, which was T1N1, infiltrating ductal carcinoma, ER-positive, HR-negative. That was 17 years ago. At that time I had a lumpectomy followed by chemo and radiation. My kids were so young at that time, but I shared with them gingerly what they needed to know.

Passed…. Losing that year and watching my children grow, my husband changed-becoming a caretaker of both me and the kids.

Passed… Losing control of what I could not change, while working full time

Gained… Finding my inner strength!!

My second diagnosis, reoccurrence of the cancer about 6 years later.  This time mastectomy, reconstruction, followed by chemo.

Passed….another year lost in the haze.  More time lost with my kids and husband. Still working full time, my husband took charge once again.

Passed.. My fear of reoccurrence.

Gained.. The knowledge of new drugs introduced, to help with the side effects.

Gained.. Peaking my interest in helping others touched by cancer.

My third diagnosis, metastatic breast cancer, approximately 6 years later. Mets to my liver and bones. This time my life has totally changed. I decided to stop working and devote myself to my family, taking care of myself, and helping others.

Passed…  Feeling of insecurity.

Passed… Now, although my children are grown,  not being present in their life.

Gained..My passion fulfilled.  Giving much of my time back to those touched by breast cancer.  Helping those in need of a person to talk to..Living Beyond Breast Cancer’s Breast Cancer Helpline.  Being an advocate to help raise awareness of Metastatic Breast Cancer. Fighting for more funding to help research. I have never been so fulfilled by all the volunteer work I do.

Gained….Thanking my breast cancer for molding my life and helping me find what I always wanted to do, working for the “greater good”, helping others and fighting for more research.

Hip to Be Pink?

Reprinted with permission by the author, Maura Bivens. Read more of Maura’s blog posts at The Pink Stink. Directly below is a video she created for the Beyond The Breast Campaign.

I had a blog years ago, long before everyone and their tumor had a blog. I guess you could say I was a hipster long before being a hipster was even a thing; as soon as something was too trendy it was time for me to move on. This applied to everything from haircuts to cities.

I started my adult life living in Orlando in 1991, right as Nickelodeon opened its studio and all sorts of movies and TV shows were filmed there. Next I moved to Seattle right as the grunge movement hit, the city inundated with young adults wearing plaid and rejecting any form of cleanliness. I was not into that movement.

Two years later, now married, we moved to my homeland, Boston. I never thought Boston would be so “in”, thanks to Ally McBeal and other legal shows making it look so cool to be young and hip in Boston.

In mid 2000’s we moved with our 2 kids to Las Vegas. But in 2004, who didn’t, for goodness sake? An estimated 5,000 people moved in every month. I really didn’t see that one coming. But I stayed in Vegas, wearing my yoga pants until I ditched those when it became the housewife’s uniform in the Summerlin area.

In 2008 I found out I had breast cancer and my whole world went pink. Yes, I knew pink was one of the most recognizable ribbons, and still I felt that at stage IIB it was my duty to help spread awareness. Every October I would color my hair pink so that when people asked about it, I could tell them a little bit about the less common type of breast cancer I have, Triple Negative. A few Octobers later strangers stopped noticing, for pink hair was the trend and way too many people in Las Vegas wore it on a regular basis. October was becoming a big explosion of pink! There were now pink blenders, pink deodorant, and pink feminine products. (OK, I guess they always had those)

Maura Bivens

In 2010 I got the news that my cancer was back, and it had metastasized to my lungs and statistics showed I have about a year left to live. Suddenly, multiple songs hit the radio waves about living like your dying. Really?? How can this be a thing!? The big hit that year was the song “If I Die Young”. At the time I was 41 and could only be in Young Survival Coalition because of my age at diagnosis, but I considered myself to be young. My kids sure were- ages 9, 6, and 3. Let me tell you, these songs and videos about “living like you were dying” didn’t have a clue- it is exhausting. Living life frantically and trying to grab hold to remember every minute isn’t something that can be done for long.

After completing many rounds of brutal chemo, it looked like the cancer had stabilized so I asked what we are doing here. Am I living, am I dying, what is this? My oncologist explained it as we are trying to get me as strong as possible for the next round of treatment. Spoiler alert-I haven’t died yet. In fact, it has been almost 5 years since any evidence of disease.   I just found out there is a name for me; Exceptional Responder. I’m thinking that’s the medical term for miracle.

But I had those words stuck in my head, and this is how I live. I am trying to get myself as strong as possible for the next round of treatment. Even this August when I hit five years NED, I still want to be eating well and trying to be in the best shape I can be because I will always be stage IV. This is my story of living in between worlds.