#RealHopeIs

http://youtu.be/NH4ED5opHZQ

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. 

#Heartbroken

#DontIgnoreStageIv

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.

http://www.latimes.com/local/obituaries/la-me-laurie-becklund-20150210-story.html

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. 

New Beginnings

New Beginnings

I still remember the day I got a call from Bill Aron. I had admired his photography long before I knew it was his, and even more so after our paths began to cross. So I was quite surprised, and pleased that a mutual colleague suggested we speak his new project – a collection of photos and stories of people thriving despite cancer. A long time in the making, New Beginnings: The Triumphs of 120 Cancer Survivors comes to fruition on March 4. It’s an amazing collection of vibrant photos and real-life stories, including mine – and Dr Susan Love’s! The hope, joy and inspiration captures in both pictures and words, is just what the doctor ordered. If you’re interested, both Amazon.com and BN.com are taking pre-orders now!

A Fine Line

A Polish survivor walks through Auschwitz’s infamous “Arbeit Macht Frei” gate after laying wreaths at the execution wall. (Sean Gallup/Getty Images)

Today marks the 70th Anniversary of the liberation of Auschwitz, the Nazi death camp where, over the course of less than 3 years, 1.1 million prisoners were put to death. While most were Jews, others were not exempt: Romani, Polish political prisoners, Jehovah’s Witnesses and gays were also among those sent to the gas chambers. Today, in the snow, 300 survivors of Auschwitz bore witness, again, to the atrocities.

When you listen to their stories many themes emerge, and I believe most of them have critical lessons for us. Today I have been pondering the very thin line between life and death.

  • A compassionate guard pushes you into the work line.
  • The right person takes you under his wing.
  • You have expertise that the Nazi’s needed.
  • Your work detail was late in returning to the camp, and the day’s “quota” is filled.
  • Another in your barracks covers for you when you are sick.
  • You have cigarettes to trade for favors.

For every survivor there are any number of times when fate was on their side, countless times when they ended up in the right line, in the right place, in the right moment. And for one more day, they were spared. And as each new day dawned, life was on the line again.

Nothing can possibly compare to the tragedies suffered in the 20,000 labor, transit and extermination camps of the Nazis; its darkness is without measure. Yet today I find myself exploring the parallels between those survivors and breast cancer “survivors.”

  • Like the Holocaust survivor who has to learn to live with and let go of having survived, I often hear about breast cancer “survivor guilt,” the inability to comprehend why I made, and another didn’t – and the need to figure out what to make of and do with “survival.”
  • Like the Holocaust survivor whose good luck today finds him in the right line at roll call, most of us with breast cancer know that today’s clean scan is luck – and the next one could change everything.
  • Like the Holocaust survivor who doesn’t know if or when his next meal is coming, we wonder about the next life-saving therapy, and the one after that, and whether they will arrive to a trial or clinic in time.
  • Like the Holocaust survivor who fears the ravages of illness or the risk of injury that will send him to the gas chamber, we deal daily with “collateral damage” to our bodies and our minds, and of not knowing where any given downturn might end.

Stanford University Library Special Collections

Our minds seek to make order out of chaos, seek to find the very thin lines that put us in one place or another, that explain the ways in which one instant, a bit of luck, or a bad day can distinguish between life and death. We have quite a bit to learn from these survivors indeed.

Post Script: I know some will object to my use of the word “survivor” in the context of breast cancer, and I appreciate the many perspectives that come to bear on the issue. However, I personally believe that surviving the words “you have cancer” is more than enough to be counted among our survivors. I hope that we can see beyond the language and come to this with an understanding that in both instances we are talking about individuals upon who outside forces have acted in a manner that legitimately threatens their very lives. We are generally comfortable with Holocaust, earthquake, tsunami or flood survivors – and it is in this context that I’ve chosen to use the word herein.

Feeling Isolated? Open the Door

Author, blogger and online friend Nancy Stordahl recently shared a piece on the METAvivor blog about the isolation many metastatic breast cancer patients experience, and the variety of contributing factors. I urge you to read her post here: Ending the Isolation – Every Voice Matters. I agree whole-heartedly with Nancy.

In fact, about a week before I read Nancy’s post I had been thinking about this issue of understanding. Knowing how to share what we endure is a delicate balance of time and place and degree of detail. We are generally well aware that no one around us lives in the disease the way we do, and when we are lucky with effective treatments that aren’t particularly debilitating, our illness is largely invisible. When MBC patients claim that others can’t understand unless they have been here, then we check out of trying to share their experience. If we stick to that, then we perpetuate our own isolation. We can’t blot the door and blame others for not walking through it.

Nancy writes:

If you have observed a loved one suffer and ultimately die from metastatic breast cancer, you understand a whole lot, but still you don’t really know. Until it happens to you and your body, you can’t really know. This is true of many things in life.

Her last line was already in my head before I finished the paragraph before it. It is true for so many things in life. When I trained as a social worker one of the first things we were taught is that we don’t have to have a client’s particular experience to bring forth our empathy – there are many opportunities for us to leverage our own situations to understand the feelings of others. We do so every time we cry at a movie or offer sympathy to another, and in countless other situations. It is true that unless we live through most things we can’t completely understand. It’s also true that we can come close enough to lend support and encouragement, share fears and frustrations, and express our mutual fury at the loss that is metastatic breast cancer.

As always, I am grateful to Nancy for her frank and thought-provoking perspective. While there are plenty of people who don’t want MBC patients to disrupt their own denial, it’s important that we find the ones who are standing at the door with support, thank them, welcome them, and help them learn.

Heaven Can Wait – Death by Cancer

IMG_2497If you haven’t stumbled upon it by now, check out the British Medical Journal’s blog piece by Dr. Richard Smith asserting that death by cancer is the way to go. I am astonished, and I’m not alone. Smith contrasts sudden death, death by dementia, death by organ failure and death by cancer and comes out in favor of the latter. (He conveniently excludes assisted suicide, which is the only situation in which death is in the hands of the patient.) Perhaps, as other bloggers have suggested, more time with end stage cancer patients, seeing first hand what living with cancer looks like (never mind dying from it), would likely provide Smith with some much-needed perspective.

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