Sharing for a Cure


As you probably know, I’m not one for the pink party that breast cancer has become, I’d prefer to stay at home and hide rather than confront yet another BCAM (Breast Cancer Awareness Month), and I certainly don’t endorse “Shopping for the Cure.” But I do think this is a good time to share some highlights that have come across my path. Last year LA-based photographer Bill Aron published his long-awaited New Beginnings: The Triumph of 120 Cancer Survivors. This beautiful photo-journal highlights the inspirational stories of living with and after cancer – stories of hope and aspiration, of joy and even transcendence. I’d urge anyone with cancer to engage with the book. It is available on Amazon and other sites, but is also alive and well on a new blog, where you can share your own story. And you’ll find some familiar faces, too!


I Am Anna comes to us from ReThink Breast Cancer and shares the beautiful and heart wrenching story of a young mother seeking to leave her legacy for her husband and young children, while facing the reality of her disease. It may seem like a long video, but if you want to understand living inside the life of this disease, I can’t think of a better film. It’s not easy, but it is powerful, and worth your time.


There are any number of meaningful ways to get involved. This year MET UP, a new organization that wants to change the conversation about metastatic disease, is staging a “Die In” in Washington DC on Oct 13. Their goals are:

  • We want the SEER database modified to begin tracking when someone with early stage disease metastasizes, so that every woman and man with metastatic disease is counted.
  • We want additional research funding for all cancer types. The National Institute of Health (NIH) now only funds about 8% of the grant applications it receives. We want that number increased to at least 25%.
  • We want at least 30% of federal breast cancer research dollars to be spent on metastatic disease, with a focus on translational research.

If you would like to sign on to their agenda, please consider using this draft letter to contact your members of Congress. We are in dire need of greater awareness, a better understanding of the disease, and more funding for research.

So – enough pink – let’s learn and act!

In John I Trust…

Long, long overdue, we have finally dotted the i’s and crossed the t’s on all those pesky documents that grown ups are supposed to have – wills, and trusts, and so forth. And while I was in the process of doing this, someone actually raised the same topic on a bulletin board I follow, mentioning how satisfying it was to know it was done. I agree!!

That said, addressing health care directives, living wills and, ultimately, what I want in terms of end of life treatment wasn’t exactly easy. Cathartic, important – to be sure. But going through dozens and dozens of scenarios of various forms of incapacitation, and what I might want so as to give others a sense of what I might want at the end of my life wasn’t without its emotional pitfalls. There were afternoons when I would just cry – happy to excise the tension, but deeply sad and resentful that I had to think about it at all. I get why so many people just put their head in the sand! (PS My quick internet search didn’t find any women engaging in such behavior – just sayin’.)

In the end it is the realization that no matter how many tales I spin, out, no matter how many scenarios I come up with, it’s not likely to go that way. Whatever happens at the end of my life, all I can do is to share my priorities and beliefs, and count on others to feel good about carrying out my wishes, even if they don’t match theirs; to count on others to let me go even when they are not prepared to say goodbye.

As things stand today, I’m guessing that falls to my husband. We have been together since we were just about a year older than our son, from the tender age of 18. We have weathered storms and celebrated milestones. We have loved; we have angered; we have built a wonderful life and a loving family; we have trusted and we have had faith in ourselves and each other through more than three decades of ups and downs. Just thinking about an end to that, under any circumstances, is heartbreaking, but there is no one I’d rather lean on – in sickness and in health.

Another Day – Another Blessing

I suspect that there are times when I utterly annoy those around me with optimism. Not that I don’t have my moments when I simply fall apart, as most of us do, but I am a perpetual “glass half full” sorta person. It helps me feel better when I can see the silver lining, focus on the up side of whatever I am experiencing. Today I had an incredible opportunity to help educate about metastatic breast cancer and meet some amazing fellow travelers. We attended a focus group looking at the side effects of MBC medications. And we put it ALL on the table (except as I now think about it, weight gain! oops) – fatigue and poor sleep, hair loss and loss of sex drive, perpetual hot flashes and more.

What I found most interesting is our immediate bond. In the 10 minutes we sat together in the waiting room, it was already clear that the facilitator was going to have a bit of a challenge in keeping us focused. There was so much to share, so much to commiserate about, and so much to celebrate. Without exception we each found a new spirit in our lives after our MBC diagnoses, and I think it’s fair to say we each preferred the paths and attitudes we’ve adopted since our diagnoses. We all seem to be living more fully on whatever time we have!

So with gratitude for my new friends, and those who brought us together, I’m signing off on yet another great day!


A single choice: will I live today? Really live?

Will today have meaning? Will I use my time wisely? Will I nourish my family, connect with my friends, and attend to my soul? Will I make a difference today?

Will I laugh, think and cry, as basketball coach Jim Valvano urged?

Valvano died of metastatic cancer just eight weeks after he taught just that during an Espy awards speech, where they tried to give him a time limit. HA! (PS. Take the 11 minutes to watch it if you haven’t already!)

Over the past year or two I’ve been busy with very important work – work that I believe will lead to meaningful change to those living with metastatic breast cancer. I am blessed to have had the opportunity to lead an organization in this work, to be a part of defining its future. I am grateful for the chance I had, for sharing it with leaders who care passionately about the work, and for the progress we have made. But serving as president of a growing non-profit has left time for little else. And so now I’m grateful for new opportunities on the horizon!

Stephen King’s quote from The Shawshank Redemption has been an imperative for me for since I first heard it, but never more so than since my metastatic diagnosis in 2011. I’m keenly aware of how short life is, and strive to make the most the days I am blessed to live. And I’ve learned that sometimes less is more…

Life is about change, about evolution. Life is about becoming. A teacher and rabbi of mine once told me that we only become more of ourselves as we age and/or face adversity. He’s probably right.

But despite the ever-present drive to do more, fix more, support more, take on more, change more, be more, I know that’s not necessarily “living.” I’ve had the last month or so to slow down, make more time for family and friends – and for me. It has allowed me to step back from my advocacy and look carefully how I spend my time, determining which projects I truly find life-affirming and which might be left to others.

So I stumbled upon this….

Some of these come more easily than others, but I’m going to look to it as a reminder of how I want to live – the choices I want to make. I’m using it as a reminder to reconnect with friends, to focus on my writing, to laugh, to think and to cry.


Share your own #RealHopeIs…

Why Advocate?

There are times when I feel like I spend more time on breast cancer advocacy than I did on my half time job. It’s probably true…

So in the midst of my own almost-but-not-quite stable disease, why the long nights of reading grants, long days of travel and meetings, the long talks with researchers, the long days or planning, grant-writing, networking, and whatever else quickly fills my days? 

I recently closed a study that will serve as the basis of an abstract and poster entitled “In Our Shoes” and will seek to raise the collective voices of metastatic breast cancer patients around living with our disease. One respondent’s comment about how finances impacts her family offers the best possible answer for why I do what I do. 

I also know that the sooner I die, the more money my family will have. 



Have you noticed the “Stop Out BC” social media movement? Launched by Beth Fairchild in March, the goal has been to leverage the combined influence of our social media reach to focus attention on MBC-specific issues and concerns. The effort has brought people across the country together – MBC patients, early stage patients, caregivers, supporters, and those who have lost loved ones the metastatic breast cancer. What impresses me most is the way it has brought together so many to lend greater attention to the 30% of breast cancer patients who will die of MBC.

Awareness is, without a doubt, critical. So much of our cultural attention has focused on early stage disease, early detection and “survivorship” that we’ve left many MBC patients feeling alienated and alone, as if we can’t bear to be in the presence – even the virtual presence – of those who will die from our disease. Standing with and supporting those who are living with, struggling through, and dying from breast cancer provides a lifeline out of the sense of isolation and hope that others will understand and help.

However, awareness alone doesn’t prolong lives or end death from breast cancer. Many of us, myself included, have long rallied against awareness for its own sake within the context of early stage disease. I believe we must be mindful of this trap, too. The question must be asked: How do we move from awareness to action?

I’m the president of METAvivor, so I can’t possibly miss the opportunity to pitch what we do and how we’re growing to meet the needs of the metastatic community.

  • FUND: At our core, we fund research. We do so as the only American nonprofit that raises private funds to allocate through a competitive peer-review process. As I write this we are heading into our 2015 grant cycle. Approximately 50 applications are being reviewed. The focus of our grants is, exclusively, research that will benefit the already metastasized patient. And unique this year we will also be offering a grant for the development of a liver metastasis mouse model that will help researchers work toward improved treatments for those with liver mets.
  • SUPPORT: METAvivor’s roots lie in mutual support amongst patients. In the coming months, with thanks to an Avon/Pfizer MBC grant, we will begin the process of creating a “best practices” and training program for those who would like to start a local, peer-led MBC support group in their own communities.
  • PARTICIPATE: Whether by joining us at one of the many Sea to Sea for MBC stops on our journey across the country or by joining our team to spread information and education in your own community, you take a critical action step that makes a real difference in the lives of those living with MBC.
  • LEAD: METAvivor is proud to be a leader among nonprofits working with and on behalf of MBC patients. As we expand our reach we welcome leadership in its many forms, from social media and organizing experience to development and management opportunities. Our team is expanding, and we would be thrilled to put your experience to work!

METAvivor, of course, does not stand alone, and there are many other opportunities to migrate from awareness to action!

  • Are you near a research center? Researchers appreciate connecting with patients. It provides opportunities to share and understand their work from the patient perspective, to get advice about patient needs and priorities, and to celebrate success with those who most readily understand. Pick up the phone, send an email, and introduce yourself!
  • Share your story. You are (or your loved one is) the very face of metastatic breast cancer. Local media, local organizations, schools, and others are ready to learn from you.
  • Hospitals, treatment centers and individual doctors and nurses can learn from you. Even those who work in at the very heart of cancer patient care don’t necessarily see life with metastatic cancer from the patient perspective. Look for opportunities to share it with you.
  • Support a Support Center. Teach a class or volunteer in other ways, and help make sure they understand the specific and unique needs of metastatic patients.

Well, that’s a start. Please feel free to share more ideas about moving from awareness to action in supporting those living with metastatic breast cancer. Whatever you do, #DontIgnoreStageIV

395 Sq. Ft.

This one goes out to AnneMarie

I lost my mind in 395 sq ft.

I checked under both beds, as my mom taught me to do before checking out of every hotel room of my childhood.

I pulled back the shower curtain, found my conditioner and comb, but no mind.

And for the next fifteen minutes I wandered around the room aimlessly in search of something. That’s how chemobrain works on the ground, at least for me. Yes – really – 15 minutes.

I’d spent the weekend at the Young Survival Coalition Annual Summit. Five years ago this was the first breast cancer advocacy conference I ever attended, and the first step on an incredible journey of advocacy. This year I got to attend on behalf of METAvivor, but also someone who has been where these young women are – charged and passionate and frustrated and angry and confused and, and, and….

I admittedly overdid it. But from early morning coffee, to late night dialogue, I had the incredible chance to listen to these women. I got to hear about their personal fears of recovering from treatment, the delicate balance of worrying about metastasis, the state of research (or lack thereof), and their frustrations about not being heard, acknowledged, of not belonging to the club they never wanted to join. I would not have given up a minute of these conversations.

And so it was that, when it was time to pack up, I lost my mind. Now packing up is simple, right? Everything that’s mine in the room is going into the suitcase. There aren’t decisions to be made. It’s all going home. And yet I couldn’t do it. On the other end of the task was making my way to the exhibit room to pack up the METAvivor table, ship the sign to Annapolis, collect all my person things, pack up the sign-up lists, and, and, and….

So at 9 AM on “fall back” morning, pissed over the lost hour of sleep after a too-late night, I called the front desk. They graciously gave me my hour back, extending my checkout until 1 PM. I opened every door in the room, and left.

There was a security camera right outside the door of my room. I couldn’t help but laugh to think that a security guard somewhere in the hotel had spent the weekend watching me go back and forth again and again to collect things I had forgotten or to leave things I decided I didn’t need. I think I pushed the “down” button on the elevator half a dozen times, and then ran back to the room, only to miss my ride to the conference floor. I was my own very own three-ring circus.

I found the coffee station and filled up, got the table supplies packed up and down to the business center to ship off, and returned to my room an hour later, a little calmer. Or more confident. Or less cluttered. Oh hell, I made it back to the room…

All the doors were open – bathroom, closet, drawers. That’s my anti-chemobrain strategy: close the doors as I clear out a space, and hopefully everything finds its way to the suitcase.

Bathroom? Check.

Drawers? Check.

Pull back the bedcovers? Check.

Clothes from the closet? Check. I close the door, only to be stopped by my dark brown shoes that I just happened to spy with my little eye. Check.

Scientific poster for the next conference? No where…NO WHERE.

With 10 minutes left before the exhibit center locks up, I dash out the door and all but bump into a housekeeper as I dash for the elevator, then run back just before the door closes to grab a room key, miss my elevator, and wait for another.

It’s nowhere. Moments from panic, I sit for the first time since my feet hit the floor when the alarm went off too early. Think, I tell myself. And as I look down to bury my head in my hands, the green fluorescent tube peeks out from the curtain behind me. My poster! Behind me? Seriously – I thought that was a good idea?

Back up in the room, everything finally in its place, suitcase zipped, backpack loaded, poster secure, I wonder how many other women in other rooms are playing out this same scenario.

Celebrating the Life of Laurie Becklund

There is no way that I could say it better…

I had the good fortune to know Laurie, her persistence and tenacity, her demand for honesty, and her commitment to all of us living with breast cancer. She was a brilliant journalist and beautiful soul, and she was stolen far too soon…

Please, read her final words.

Only the Weak Die of Cancer

I got an email from a friend this morning, and I knew as soon as I saw the links that it wasn’t going to be good. There was a link to the image at the left, another to story of this “survivor.”

I am the first person to argue that every single patient gets to approach cancer on his or her own terms, with the language and attitude that most fits, no matter what works for anyone else. I abhor the dictates that we should eliminate all war analogies, that no one should call cancer a “gift” or discuss their experience as a “journey.” The very fact that you have cancer gives you the right to frame your experience. Period. No exceptions.

However, when others frame it for you, that’s another matter. Maura Bivens is the the woman featured in this solicitation. Just looking at the picture, the messaging is clear. She appears strong, a fighter, determined, even fierce. I certainly don’t want to take her on. Her profile claims that “…not once did she surrender to the disease.”

So what does that mean for those who aren’t “survivors,” those whom cancer has stolen from us? I think of friends I’ve lost over the years. They are among the strongest people I have ever known. Like Maura, they did yoga and led “prayerful” lives. They were active and engaged in the world. Some were fit, some were not – they are equally as dead. They ate well, or they didn’t. Some were fierce, others soft, most were both. They were exercise fanatics, vegans, mindful, brave and beautiful.

Not a single one surrendered to her disease.

Not a single one looked inward and said, “OK, cancer, you might as well kill me.”

Cancer doesn’t put up a fair fight. It doesn’t, by definition, follow the rules. It is pre-programed to defy cell death, to co-opt the body for its own use, to replicates faster than other cells, to overtake organs, and it doesn’t care how strong your will or determination might be.

I’m thrilled Maura appears to be doing well and feeling strong, but this isn’t about Maura. This is about the fact that  Komen has yet again launched a fundraising campaign that lays blame for cancer deaths squarely at the feet of those who have died. It’s convenient that the dead can’t complain. They can’t come back to talk about their fierce will to live, their end of life struggles, the many treatments they endured, or how much they and their loved ones have lost. The dead are an easy target, and Komen takes a cheap shot.

Despite Komen’s best efforts, we who survive can and will continue to bear witness to the lives that have been taken, to hold space in our hearts for the ripples of loss they have left behind. We will honor all that they gave, and the fullness of the lives they lived. And we will not allow them to be diminished by campaigns that make them out as weak, as losers in the battle for life.

I also wonder if Maura ever learned how much Komen directs to breast cancer research before she leant her name to this ad. 

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