Bridging the Gap

Last November I was on the planning committee and a speaker for Life Beyond Cancer's annual survivorship retreat at Lakeway Resort on Lake Travis, outside of Austin.

From: The New York Times.

          This conference is exemplary for lots of reasons:  it's not just for "the breasts," but for women with any kind of cancer, at any stage.   Women with metastatic disease initiated some of the best discussions we had:  at the end of the day, what really matters? How are you going to spend the time you have on this planet?  How will knowing each other empower you in the months to come?
          It's ironic to me. Although articles about "fear of recurrence" are ubiquitous, its silent and subsequent corrolary -  the avoidance of  women whose cancer has recurred -  gets short changed.
         That's why tonight on #BCSM we're going to talk about that.  This is not about symptoms of metastatic disease or its treatment.  It's about the experience of some 150,000 women with breast cancer, whose "new normal" can change with every CT scan.
          It is my hope that this discussion can help distill fear and deepen your compassion.  Women with metastatic disease do not need my fear, or yours.  They don't need false hope or half truths.  But your friendship and support?  There's a world in those two words.
          Let's see what we can do.

#   #   #

Tonight on #BCSM:  "Bridging the Gap - Meeting the Needs of Women with Metastatic Disease" at 9 PM ET / 8 CT

Resources:  For two exemplary voices in the struggles of women with metastatic disease please follow  @ccchronicles and @whymommy.  Powerful voices, beautiful women.

From The New York Times: A Pink Ribbon Race, Years Long. ; Metastatic Breast Cancer Network, 

LiveStrong Summit

For more than 11 years, Lance Armstrong has pursued cancer with the same determination that made him a seven time Tour de France winner.

And today, the effort reached new heights with the opening of the LiveStrong Global Cancer Summit in Dublin where Armstrong, staff from Lance Armstrong Foundation, and some 500 delegates from around the world gathered for this first time event to define -- and map a plan for -- a world without cancer.

During today's opening ceremonies the traffic from the tweeting delegates brought Twitter processing to a near standstill any number of times. Photos from registration, the city's narrow winding streets, and heart stopping chalk written messages must have sent all the orbiting communications satellites into spins. Just my twitter page alone was jumping so quickly with delegate posts that I had to sit still to avoid vertigo.

All of us want to be there, to pass on that feeling. The excitement. The community. The immediate friendships. This kind of advocacy has not been seen for decades. It's a kind of grass roots momentum that is one part Iowa optimism, combined with youthful invincibility and communicated -- immediately -- via incredible technology. It's 'can do' with ITALICS.

There will be many announcements from the LiveStrong Summit. We will all be more informed on the world's cancer dilemma. Then we can all pray, and work, and imagine, for the time when cancer will be nothing more than something that used to happen, years ago.

Where There's Knowledge Hope Follows

The LiveStrong booth at the World Cancer Congress,
August 20, 2010 in Shenzhen, China.

This past week two significant reports sent waves through the cancer universe.

The first had to do with the global financial burden imposed by cancer and the other -- if not proof then -- a clear finding that palliative care can not only ease the suffering of terminal cancer patients but actually extend their lives.

First -- the Global Cost of Cancer

While understanding of the global extent of cancer has grown, for the first time ever a study conducted by the Lance Armstrong Foundation and the American Cancer Society attached a number to its worldwide economic toll: $895 billion. This figure -- or 1.5 percent of the world's gross economic product -- doesn't even include the cost of treating the disease but represents financial losses from premature death and disability.  If those medical costs were included the figure would more than likely double.

Another way:  cancer's economic impact represents the "....single largest drain on national economies, compared to other causes of death, including HIV/AIDS and other infectious diseases."

And another way:  women in the United States (and probably UK, as well)  diagnosed with breast cancer have an  84 percent chance of surviving for at least five years. In Gambia? 12 percent. This from CanTreat International, a working group of worldwide cancer experts. Their work also emphasized the looming cancer crisis in developing countries.  Both the CanTreat and LiveStrong/ACS reports were presented at the 10th World Cancer Congress in Shenzhen, China.

Our advocacy is not only essential to women here, but we need to embrace it as an asset to share with our sisters around the world and raise awareness, diminish stigma, and improve screening and treatment. Let's continue to form alliances with other women, teach each other, and listen to each other's experience.   A worldwide cancer burden isn't something "out there" or "down the road."  It's now.

Knowledge Brings Hope 
The phrase 'palliative care' may be one of the most misunderstood terms in the entire cancer vocabulary. Years ago I often considered palliative care as a sad and  parallel universe.  It was a place I wanted to avoid when I was in treatment, as though to even brush into the words would mean that my boat called hope had shipwrecked.

Not so.

This week a finding reported in the New England Journal of Medicine, arriving as it did on the heels of Atul Gawande's stunning article (“Letting Go”) in the August 2 The New Yorker – defined clearly what palliative care is and what it can do. 


In the study, patients newly diagnosed with aggressive lung cancer were provided palliative care in addition to standard oncology care. The other group received standard oncology treatment which primarily involved chemotherapy. The patients who received palliative care and standard chemotherapy had less pain, less anxiety and less depression and also lived almost three months longer.  


Three months may seem like the blink of an eye when you are in the thick of things, but consider how much that time means to a family supporting one of its members at the end of life.  Every day spent comfortably in the company of loved ones is a time of grace. 

In essence palliative care, which literally means to soothe or relieve, is a “seamless model of care across a range of care settings.” A team composed of multiple specalties designs care to provide the patient and family with the best possible quality of life.  This can range from coordinating community services to supporting decision making and controlling pain, in a hospice, hospital or home setting.  Above all else it is holistic.

The study’s author, oncologist Dr. Jennifer S. Tegel, said that doctors and patients “traditionally see palliative care as something extended to a hospitalized patient in the last week of life.  “We thought it made sense to start them at the time of diagnosis.  We were thrilled to see such a huge impact. It shows that palliative care and cancer care aren’t mutally exclusive.”

Palliative care and cancer care aren’t mutually exclusive.

It also seems to me that the combination of the two could be called wise medicine.  Humane. We may be approaching a time when medicine makes sense, when we, as patients seek physicians to help guide and advise us over and through difficult passages.  Oncologists can provide a set combination of tools to tackle your cancer, or mine.  But a bag of chemo or a round of proton therapy is never enough.  Everything that promotes healing – physically, emotionally and therapy – comes into play and is part of the plan.

This can mean letting go of the “security blanket” of traditional care, when walking away from a hospital or cancer center is an act of great courage.  It does not mean you must walk away from medical support.  A friend in Minnesota wrote movingly of her husband’s decision to let go of threatment and face “life’s great, last adventure” at home.  She posted a photo of the view he had from their bedroom window on a clear and icy January morning. He died not long after that, with none of the agonizing and intrusive measures Dr. Gawande’s article so clearly decribed.  

n  For your courage and grace BA, and in memory of Jack

Note: Something interesting from the NYTimes article the NEJM study:  Dr. Jennifer S. Tegel herself has been a cancer patient.  Sometimes it takes a cancer patient to break ground and help move care another step forward for others.  Hats off Dr. Tegel, with continued wishes for your health and happiness.

Additional information:

1) Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO) offers an incredible resources at http://www.caringinfo.org including downloadable material on state-specific guides, legal considerations, planning ahead, and more.

2) "Developing Nations to Bear Cancer Brunt": Reuters

3)  On Twitter:  Wednesday evening Tweetchat with professionals in palliative medicine.  Use the hashtag #hpm to bring up the discussion and confirm time and topic @HPM.  This caring and commitment of the men and women in this group shines through loud and clear.   Wonderful people.

Back to Reality

Back to reality:

HoustonChron Houston Chronicle 

Houston weather today: Highs around 101. Mostly sunny, turning partly cloudy. bit.ly/c7r3wv

Travel is absolutely a fabulous gift.  The return isn't always, as you can see by our forecast.

The bigger shock, though, has been the relentless march of cancer across the lives of people I care about.  In the short time I was gone two women died of cancer way, way before their time; two more were recently diagnosed, and another friend had to have three separate surgeries to obtain clear margins in her early stage breast cancer.  

Stranger yet was the juxtaposition of these events to an article about Kris Carr in The New York Times Sunday Magazine, "Kris Carr: Crazy Sexy Entrepreneur." Many of you are fans of hers, and I appreciate that.  My concern: the grey line that connects newly emerging cancer celebrities to the Oprah and Dr. Oz powerhouse, and people accepting their utterings as gospel.  That's alarms me.  But as it's said, sex sells.


She beat cancer not because of who she is but because of the kind of cancer she had. What Kris Carr is famous for is writing about a cancer that -- most fortunately - has not taken root.  No treatment.  No surgery.  No chemo.  No radiation.  But one woman's green drinks and enemas does not constitute evidence-based medicine. It is about marketing, her shrewd ability to fill a niche for a new cancer vocabulary, and our culture's voracious appetite for a fresh face. 


Beyond all though is the nature of post 9/11 empowerment and our cultural need to believe that by golly, we can take control of any and everything with the right amount of vegetables, mantra humming, and "phabulouness." 


But it isn't reality. There are many things we can not control.  Cancer that is biologically aggressive in nature is one of them.  And I find this kind of voodoo tremendously insulting to the millions of people worldwide who are not as fortunate to appear on the other side of the cancer treatment stream with limbs, psyche and mind intact. 


Of all the cancer stories available that the Times profiled this is a sad reflection on what is perceived as "fit to print" about cancer.  This story doesn't accurately represent  people with cancer.  It's more like a cartoon, and a bad one at that.

Why We Do What We Do

Everyone has a passion.  Mine is cancer.  Cancer has dodged in and out of my life since I was 13. To this day I follow cancer news and developments, sweat it out when friends and those I love are tested, and pray for them and the doctors, nurses and technicians who care for them.


Today a story by Denise Grady in the NY Times regarding early puberty in U.S. girls was a bit of bad news for the long-term cancer forecast. This could portend an even larger population at risk for breast (and other) malignancies as these girls grow into women. Both circulating hormones and fat are implicated in breast cancer.  Another study published recently says that each pound gained after age 21 -- successive weight gain with age -- adds an increased risk for breast cancer. To top it all off, the American Cancer Society also reported today that growing waist size does not bode well for anyone's long-term longevity, but especially for women.


So with these reports I've marked different points where I stick my advocacy flag in the sand.


Since attending the innovative SXSH "unconference" in March -- Sharing Engaging Social Health -- I've been struggling to apply the "relational" aspects of social media to bear on some of the very real difficulties of being treated for cancer.  Breast cancer, unlike its more difficult sister -- ovarian cancer, provides those diagnosed with a dizzying array of choices based on type, stage, and genetic characteristics that range initially with surgery, choice of plastic surgery (surgeries), chemo- therapeutic agents, radiation, and THEN hormonal therapy that can last up to five years.  Reports indicate that fewer than half of breast cancer survivors (in particular young women) are likely to complete the treatment course; a finding I blogged about in July.


A flag in the sand and a question no one can answer: what might happen in the next 10 - 15 - 20 years if such a large portion of young survivors don't take this medicine? Was their cancer already cured without hormonal therapy or was a potential insurance policy ripped up before it was even read?

As I continued to talk about this issue with people my post evolved into a proposal, and the proposal into a submission for the first interactive health panel at SXSH, the film, music and emerging technology festival that takes over Austin in March. Then late last week I heard that my proposal,  'Social Media: The RX for Improved Adherence?' was accepted for the SXSH Panel Picker, the second phase of the selection process.  


I'm proposing a full-fledged web community that is specifically devoted to aromastase inhibitors, with feeds of women's conversations, posts from oncologists, posts from women who comply with treatment, and those those don't. The objective is for women to have a place for information and support about what might -- for some -- be a life-saving treatment element.

Look at it this way:  1.3 women worldwide are diagnosed with breast cancer yearly. Approx-imately 75% of them, or about 975,000 women, would be eligible for hormonal therapies.  That's 975,000 sisters -- White, Afro-American, Latina -- who need a place for credible information, support, and exchange.  On their terms.  

You can help me and Colleen Young (on Twitter as @sharingstrength) who is a co-collaborator with me, in casting your vote on the SXSW  panel picker beginning Wednesday.  You will have to create an account with a log in.  As soon as the page is live I'll post the link.

We can make a difference!  Let's bring this program to Austin next March!

Thanks in advance for your support,

Jody

I'll Be Back

Ah.  I'll be on the road less traveled starting today. On retreat, on the lam, off the grid, on vacation. Unplugged and uncharted. But not unhinged or unhappy.
        I've already ordered a few books to read and a new pair of walking shoes. The heels have been totally worn down in the pair I'm wearing.  I'll also pick up a small notebook for writing.  That's it.  I even have a new 'vavoom' dress. All I'll need is some red lipstick.
        While I'd like to say I'll take a vacation from thinking about cancer I doubt that will happen. As my circles deepen I know more and more women who are newly diagnosed, undergoing treatment, and one has ended treatment. A woman with a daughter and hundreds of students and people who love her.  That's the story of cancer.
        We need to continue to change the narrative of this disease.
        While I'm gone Alicia Staley will moderate the #BCSM tweetchat on Monday, August 8.   I know there are tons of topics to cover.  Would you do us a favor and jot some of them below?
         See you on Monday, August 13.   I'll be back.        

"Things They Carried"

You'll have to excuse me.  I'm having a technological moment.  Moments, more accurately.

New laptop in place. Yes, two keyboards.  Don't ask.

Since returning home last Friday evening after more than a month on the road I've truly been challenged: my laptop wheezed its last while I was gone. You know the spear that pierces your heart when you realize that what separates you from all your files is six pounds of hard, molded steel and huge swipes of your credit card. A happy camper I wasn't.  I was literally standing on the power button as if fierce thoughts might spark ignition.

And isn't it funny (yes, just friggin' hilarious, thank you very much) how things happen in tandem? My laptop blew. So did my electric truthbrush. For real. Then today? The digital scale. Voila! My belief that all things work for the greater good was restored.

Under normal circumstances I wouldn't have mentioned the scale but last week I was at Project Lead, a program of the National Breast Cancer Coalition,  six days of intensive, hands-on study of the science of breast cancer,  epidemiology and public policy. We listened to phenomenal, challenging lectures, snacked on fresh fruit, went to the next lecture, grabbed a cookie, broke into awesome study groups, nibbled on chocolate. Then we went to lunch before the next lecture started. You get the picture.  It was the best of college on steroids. So outrageously good. Before Project Lead, I traveled with Livestrong to lobby with OVAC - One Voice Against Cancer -  and at the end of June I was the social media "voice" for a five-day conference in Houston on health disparities - HealthEquity12 -  in cancer and other chronic diseases.  I was there when the Supreme Court decision on the Affordable Care Act was announced.

This brings me back to where I started. Even though I've been away, and traveled great physical and mental distances during the past month, the essentials are still the same. I think of all of you daily.  I always carry my IPAD now, which contains a photo stream of shots compiled for a talk I gave on cancer survivorship. Within that stream are photos of Betsy, and Rachel, and Susan - beloved women who died this past year. Even if it's a quirk, or an illusion, simply having those photos 'on tap' mean the world to me.  I can still see their digital imprint even though I will not see them again.

The writer John Cheever, that sublime polisher of the short story, once said after he lost some manuscripts that he just sat down and started another one. That is art. And perspective. Wisdom. My world certainly won't collapse if my Microsoft Outlook files can not be retrieved.  I can re-gather that information. But my world would not have been the same if I hadn't known Rachel, and Betsy, or followed Susan through her treatment for inflammatory breast cancer. My world would not be as meaningful had I not taken up this cause I'm immsered in now. This is what what I'll be doing for the rest of my life. Because I carry them with me.  And always will.

* * *

The Things They Carried is a brilliant short story and collection by the writer Tim O'Brien about a platoon of soliders in Viet Nam.  I originally read it in Esquire, then in a collection edited by Ann Beattie (The Best American Short Stories, 1987).  I remembered this powerful story today and this coming Monday, August 6, we'll use the theme of "things we carry" in our weekly #BCSM discussion on Twitter. 

Our Families, Our Friends, Ourselves

My sister and co-survivor.

When I was diagnosed with cancer it wasn't just about me.  My husband was part of the diagnosis.  My sister was.  

         And so were my friends, an incredible group of women that immediately organized to share helping with rides, food, errands, and "fly-overs" when they'd stop by on their lunch hour with flowers or a bowl of soup during the week following chemo.

         I was spoiled rotten, in other words.

         But I certainly can't say that was the case for my husband or sister, or my friends, even.

         I had glimpses....looks I caught on my husband's face when he didn't think I was watching; or the moment I had to screw up my courage to call my sister and tell her that I had cancer.  She was newly separated, and a working mother.  Her son was three.

Steve & I at Peyton's Felicity Farm.

        The demands of their lives didn't stop because I had cancer. They multiplied. 

         And treatment can go on for a long time.

        The question becomes:  how can we truly help the entire family - whatever its make-up happens to be.  A brochure on "Caregiver Burnout" doesn't really go the distance for those who are in the trenches with us and are carrying the load while we can't.

        Let's talk about this tonight on #BreastCancerSocialMedia tweetchat beginning at 9 p.m.   These are tough issues in my book, and I'm looking forward to hearing what helped you and yours, what didn't, and what we can do to change that.