A Husband’s Thoughts on Cancer

Those of you who have read my blog know that my first cousin, Laura, was diagnosed with HER2+ breast cancer in 2012—and that just a year and a half later, she felt a lump in her neck, which led to the devastating news that she had metastatic recurrence to her lungs, liver, and multiple lymph nodes.  She immediately began treatment again, this time for metastatic breast cancer (MBC).

Fortunately, she responded incredibly well to her combined targeted HER2 treatment with Herceptin and a newly approved HER2 targeted agent, Perjeta, and was found to have no evidence of disease (“NED”) since October 2014.  But as she explained in her blog, in the spring of 2015: “I started feeling a tiny bit off when doing flip turns at the pool.  That’s all.  And my eyes felt bleary from what I assumed was my two day per week job in front of a computer where, with my reading glasses on, I had to be very close to the screen.  In my former life, I would have chalked it up to [being] tired or hungry.  In my occupation as cancer patient, I knew to request a brain MRI.”  And it was then that she learned her cancer had metastasized to her brain, with 18 lesions that were too poorly differentiated for localized gamma knife.   She therefore underwent whole brain radiation and, later, following the development of more brain lesions, gamma knife procedures.   In March of this year, Laura wrote the following about her most recent scans:  “’My body has no visible cancer right now.  Yea!  My brain has five tiny lesions that aren’t a big enough deal right now to treat.  Yea…..? This is a ‘great report’ from both of my brilliant docs.  Grace is my interior screaming, ‘What Kind of Fuckery is This?*’ while trying to be content with walking around with five cancerous lesions, however small and asymptomatic.”  (*As Laura explained, “It’s what Amy Winehouse sang so gorgeously in ‘Me and Mr. Jones.’  ‘WHAT KIND OF FUCKERY IS THIS?’  I love curses I’ve never heard before, especially when they fit a situation so well.”)

Also in March, Laura’s husband, Jon, wrote a deeply moving post on his Facebook page that brought me to tears.  In the days that followed, my thoughts kept returning to his words, and it struck me that far too many people have never heard such thoughts from the loved ones of women or men living with MBC.  I therefore contacted Jon to ask whether he would be willing for me to share his post on my blog, explaining that I had two reasons for my request.  First, there was no doubt that his words would deeply resonate with so many.  And second—and so importantly—his post could go far in educating others who have far too many misconceptions about MBC.  Jon graciously gave me his permission, and so, without further ado, I’m honored to share the following with you today.

Jon Graves and Laura Snyder

“My Thoughts on Cancer” 

“Every now and then, I try to write something about what it’s like with my wife having metastatic breast cancer (MBC).  Laura has been living with metastatic cancer for just over 33 months, which happens to be the median life expectancy for someone with MBC.  This statistic could be a little skewed, since there are a couple of new [targeted] drugs (Herceptin and Perjeta) that have become available over the past two to four years that should increase life expectancy for those with HER2 positive breast cancer.  She is [also] on chemotherapy and will continue on chemo of one type or another for the rest of her life.

“Right now, Laura has five brain mets (tumors) she is just walking around with.  They are very small, so her radiation oncologist just wants to wait before doing a procedure.  But this is me telling facts and not feelings.

“Ever looming is death.  Metastatic cancer is the cancer that kills.  So death is the first thing that is always lurking.  Every three months, she has scans, and we see if there is cancer in the body or in the brain.  Her cancer likes to invade her brain.

“But beside the big thing (death) is the human trait of planning ahead.  Thinking of the future.  Our future is lived in three month scan cycles.  But at the same time, I think about what is happening in ten years when I’m in my early 60s.

“My birthday is next week.  I will turn 53.  My Dad died when he was 52.  I have been afraid of 52 for a long time.  Laura made it past 52, and it looks like I will,  too.  But it brings up lots of emotions–especially the long-lasting void left for my wife and kids, who never met my real Dad.

“What is it like living with metastatic cancer (from a caregiver/observer view)?  Day to day can be good, generally is good.  Dog walks and amazing dinners.  Laura is cooking more than ever before in our marriage, and the food is amazing.  But there is a knot in my stomach, a catch in my throat, when someone talks of retirement or the future.  I wonder if I should be paying attention when people talk about swiping left or right on Tinder or Teaser (?) or whatever the dating app of choice is.  Will I be looking for someone to retire with in 15 years, or will Laura be there by my side?  Like everything in life, I just don’t know, but my mind wanders to the uncertain future late at night or early in the morning.

“I also feel guilty about wondering about my future when Laura is doing well while having cancer in her brain.  There are interesting and potentially life-saving drugs out there in trials that could make all the difference in the near future.

“Am I a bad person for making jokes that she can’t remember something?  She does not have nearly the cognitive abilities that she had five years ago.  Brain radiation will do that, as well as years of chemotherapy.  Her eyesight changes every few months, and she needs new glasses lenses, but I taunt her for not being able to see …  I know, I suck and should be better, but I can’t help making jokes about what is hard.

“We are thinking and dreaming of building out on our Knappa land above Big Creek.  It is great to think about moving out there when I retire, but what does that really mean–am I with Lu or alone?

“If you have read this far, please do not worry about me.  I am the same ebullient, happy-go-lucky fellow you know.  At times, I think too much, just like my lovely wife.”

Thank you, Laura and Jon, for allowing me to share this post.  I recalled that in an interview for the blog “Voices of Metastatic Breast Cancer,” when Laura was asked to share her favorite poem or song, she responded by saying that The Beatles ‘Ob-la-di, Ob-la-da’ really resonated with her in this phase of her life, as did Lucille Clifton’s poem, ‘Blessing the Boats.’”  I’m therefore sharing the below as a way of expressing my gratitude to you both.

blessing the boats

BY LUCILLE CLIFTON

                                    (at St. Mary’s)

may the tide

that is entering even now

the lip of our understanding

carry you out

beyond the face of fear

may you kiss

the wind then turn from it

certain that it will

love your back     may you

open your eyes to water

water waving forever

and may you in your innocence

sail through this to that

Lucille Clifton, “blessing the boats” from Blessing the Boats: New and Selected Poems 1988-2000. Copyright © 2000 by Lucille Clifton. Reprinted by permission of BOA Editions, Ltd., http://www.boaeditions.org.

Source: Blessing the Boats: New and Selected Poems 1988-2000 (BOA Editions Ltd., 2000)

 

A Fascinating Discussion: Bringing Expert Clinical Interpretation to Complex Tumor Cell Genomics

As a cancer survivor and an active advocate, I typically attend several cancer research symposia, conferences, and workshops every year.  But one of my favorite meetings is always the American Society of Clinical Oncology (ASCO)’s Annual Meeting, since it brings together tens of thousands of oncology clinicians, researchers, advocates, and other oncology professionals from around the world, where attendees learn from leading-edge scientific and educational sessions, clinical science symposia, oral abstracts, poster discussions, and plenary sessions.

During this year’s Annual ASCO Meeting in  Chicago, I decided to attend a half-day “pre-meeting session” on a topic that is particularly timely for every cancer patient, researcher, oncology clinician, advocate, and all other stakeholders involved in and impacted by our current genomic revolution in cancer.  Called Genetics and Genomics for the Practicing Clinician, the session included several expert panelists whom discussed cancer genetics and tumor genomics specifically for clinicians who work directly with cancer patients.  While discussing tumor (somatic) and inherited (germline) mutations and the tools and tests available to oncology clinicians, the panelists used case-based presentations and a multidisciplinary tumor board format to highlight crucial clinical considerations and to connect the panels’ content to real-world scenarios to help ensure that participants may apply what they learned to their daily clinical practice for the benefit of their cancer patients and family members.

This pre-meeting session was absolutely worth the price of my entire trip to ASCO this year.  Yet what I remember most is actually a question that was posed by a gentleman in the audience toward the end of the session.  As he directed his question to all the panelists, he made the following provocative statement: “I would argue that evidence-based medicine is incompatible with precision medicine and, as currently practiced, is not effective for cancer care.”  If you have read my blog in the past, you know that its tag line is “It’s all about the evidence,” so it may be of no surprise to you that I was intrigued by the gentleman’s statement.  At the session’s close, I introduced myself to him, explained my role as a cancer research advocate and blogger, and asked whether he would be willing to be interviewed concerning his perspective on precision medicine versus evidence-based medicine and, as it quickly emerged, his role as a classically trained human geneticist and molecular pathologist.  To my pleasure, he readily agreed.  For those of you who are cancer survivors, advocates, oncology clinicians, and any other stakeholder type affected by cancer (essentially everyone), I have no doubt that you’ll find this discussion fascinating, as it essentially serves as a primer for those interested in the genomic interpretation of tumor and inherited mutations in cancer and the many considerations and implications regarding such interpretation.

Without further ado, I’d like to introduce you to Gabriel Bien-Willner, MD, PhD, FCAP.

 

Board certified in Anatomic Pathology and Molecular Genetic Pathology, Gabe has deep expertise in next-generation sequencing (NGS) and a long history of providing critical insight into the molecular basis of disease in cancer patients.  You can click here to read our interview, published by the American Journal of Managed Care on my AJMC contributor’s page.  Or you can also read our complete interview here as a PDF by simply clicking on the link below:

Interview-with-Dr-Gabriel-Bien-Willner

I’d also like to take this opportunity to again thank Gabe for our truly fascinating and informative discussion and for his crucial ongoing efforts on behalf of all of us who have been, are, or will some day be affected by cancer personally.

 

Ode to Jody

 

This Wednesday, May 18^th, so many of us experienced a tremendous loss.  Our beautiful friend, Jody Schoger, gained her wings.  There is so much to say about Jody, about her warmth, compassion, wisdom, eloquence, determination, and strength.  She was a tremendously talented writer and patient advocate who blazed a unique trail through social media, co-founding “Breast Cancer Social Media.”  Also known as #BCSM, it quickly became a global online community, providing powerful support, connecting thousands of people from around the world affected by breast cancer, and sharing critical information that was always grounded in and supported by medical evidence.

Jody was fiercely committed to #BCSM and those who formed this tremendously important community.  In fact, shortly after she learned that she had metastatic breast cancer, she wrote to me:

“This was a huge shock, but we are absorbing it, and I need to do some rearranging of activities, so I can treat this and still advocate.  It is as important as ever.”

And as her #BCSM co-founder, Alicia Staley, shared in a beautiful tribute to Jody, “When it came time to leave, she insisted on walking me to the door and down the driveway.  I knew this would be a long walk for her, but stubborn as she was, there was no stopping her.  She walked with me, one arm around mine, another hand on her cane … She squeezed my arm and pulled me in close. ‘Now listen, you know what needs to be done for #BCSM.  It’s up to you to take care of them now.’”  This powerfully shows so much about Jody: her resolve and inner strength, her poignant honesty, her innate ability to gently guide and teach us the most important life lessons–and the simple, but profound fact that she was always an advocate for others in her heart, throughout her soul, and with every breath.

Yet as I have tried to write this tribute today,  I’ve found that it is nearly impossible to adequately describe Jody with any words I might share.   Rather, it is her own words–such as her blog’s tag line, “Working for a better world, one word at a time”–through which we can remember the beauty, joy, knowledge, and compassion she brought to so many.  The following is from Jody’s blog, “Women with Cancer,” a place where I’ll be returning often, to again spend time with her in one of the few ways I still can:

Tuesday, March 24, 2015: “Stable Disease”:  “It’s one of those days.  I can’t stop smiling.  Spring has arrived after a long, grey winter here in south Texas.  It was dank, it was long, it was wet and cold … On my part, I’ve learned a lot about the seasons of metastatic disease in these past four short months … I’ll always have cancer, yet I have a team at MD Anderson that will go the distance with me.  Friends have stepped forward and clearly demonstrated their love, compassion, and courage.  Yes, some things could be better as far as my health news.  But being here and writing and chatting with you today is simply marvelous.  It just is.”

Friday, April 26, 2013: “Cancer: Round Two”: “It has been difficult, and still is, to relate to this new information.  Yet my life is different.  How I prioritize will be different.  One thing is steadfast: my commitment to #BCSM and advocacy.  This is as strong if not stronger than ever. So is my knowledge that I am not alone in living with metastatic breast cancer.  When there are times of complete stillness, I know all of you will be with me.  That is how I feel about you.  And that we are all in this together, in this moment and those to come.”

On the same day that Jody posted the blog excerpted from above, she sent an email to several of us that began in her always honest, open, and eloquent manner: “I wanted you to hear this difficult news from me first instead of Twitter where the link below will be published sometime today.   When I went to MD Anderson two weeks ago for my annual survivorship clinic, metastatic breast cancer was discovered in lymph nodes in my neck and axilla.  I was so shocked, the only thing I could say to the radiologist who’d performed the FNA was, ‘really? are you kidding me?’ Of course she wasn’t kidding … We are adjusting.  I am adjusting, reorganizing, and sticking close to home.  Thank you for your friendship and the concern I know that will come my way.  You all help make my world go round.”

Jody, you have helped make the world go round for so many, and your words on your blog and #BCSM will continue to be a source of comfort for us.  We are heartbroken, but as you showed us, we are adjusting.  And we know that we must still advocate, now more than even before: as a wonderful and wise woman once said, “It is as important as ever.”

Rest in peace, dear Jody.

 

Immunotherapy Part II: Understanding the Unique Spectrum of Adverse Events

In last week’s blog, entitled “Cancer Immunotherapy: a Patient’s Perspective,” I discussed the increasing excitement concerning new immunotherapies for patients with advanced and difficult-to-treat cancers, the need for caution in interpreting results while the data is still young, and the necessity for more mature data with much longer follow-up on an increased number of patients.

Part II of this blog series, now posted on The American Journal of Managed Care’s Contributors Page, continues on this important topic, focusing on why it is so critical for patients and their caregivers to understand the unique spectrum of adverse events that may be associated with these agents.  Unfortunately–and unsurprisingly–when reporting on the potential benefits of immunotherapy, some in the popular media have stated that there are “few to no side effects” associated with such therapies.  Though immunotherapies are typically not associated with the same adverse effects seen with chemotherapy regimens, “The Promise of Cancer Immunotherapy: Why Patient Education is Critical, Part II” outlines why the statement “few to no side effects” does not tell the entire story and may be extremely misleading for patients–and emphasizes the information that must be shared with patients before beginning any immunotherapy treatment.

 

Cancer Immunotherapy: a Patient Advocate’s Perspective

Over the last few years, months, and weeks, we have seen an increasing number of headlines pronouncing immunotherapy as the most exciting development in cancer treatment in recent memory.  Yet what is striking to many is that these discussions are not solely taking place throughout the popular media.  Rather, immunotherapy is more and more frequently becoming a major topic among oncologists, investigators, government agencies, academia, patient advocates, industry, and other stakeholders–where some express genuine excitement and others weigh in with cautious optimism concerning its potential promise.

Yet despite the optimism, the field is still very much in its infancy, and the evidence is still emerging.  As a cancer research advocate, a key part of my role is focusing on the state of the evidence and the implications for patients, ensuring that scientific information is presented clearly and realistically, and raising the need for caution in increasing the hopes of patients when such data is still “in early days.”  In other words, because the encouraging results for some patients with previously resistant disease have been widely heralded in the popular media and since immunotherapy is in fact an increasingly active area of research, it is critical that cancer patients and their loved ones truly know what to expect from immunotherapy.

So when I was recently asked to contribute a new article for the American Journal of Managed Care and Evidence-Based Oncology  from the perspective of a patient and cancer research advocate, it was immediately clear that the following would be my next topic: “The Promise of Cancer Immunotherapy: Why Patient Education is Critical.”  So please click here to read this most recent contribution, and consider sharing it with other patients, advocates, caregivers, and healthcare providers concerning the current realities of cancer immunotherapy, the remaining questions, and why long-term follow-up and continued research is so critical with a much larger number of patients to obtain the mature data needed regarding safety, efficacy, potential adverse effects, durability of beneficial response, and impact on patients’ overall survival.

 

 

This is the Hard Part: the Other Side of Advocacy

I’m not sorry to say good-bye to 2015.  It was a cruel year during which we lost several beloved patient advocates, who were wrenched away from their families, their friends, and so many loved ones by the monstrous, hydra-headed beast, cancer.   It was the year during which I learned that my first cousin had been diagnosed with brain metastases due to her stage IV HER2+ breast cancer. It was the year when I began to fear going onto Facebook, since I’ve now learned heartbreaking news about dear friends there far too many times. And it was the year when I began to dread receiving any emails whose subject lines simply contained the name of a fellow advocate with cancer—because it almost always meant the same thing, more tragic news, the loss of yet another dear friend and remarkable advocate.

In years not so long ago, when I was asked to explain what it meant to be a cancer research advocate, I welcomed the question. After all, I was being asked about my passion, what in many ways had become my raison d’etre. I could pinpoint with precision the very week when I stepped out of my role as a cancer patient and into that of a research advocate. After much difficult, fascinating, intellectually inspiring work, I was now sitting at the table as a partner with researchers, clinicians, and fellow advocates to drive the critical research questions that truly mattered to cancer patients themselves. I was an engaged, vocal participant at national cancer conferences, sometimes watching history being made as new treatment breakthroughs were being presented—and sharing deep disappointment with the oncologists, scientists, and advocates in the audience when novel agents that were followed with excitement ultimately failed to live up to their promise. And I was meeting highly passionate, intelligent, driven people from all parts of the country and, often, other nations, who were fellow cancer survivors and committed advocates, forming immediate deep friendships. It’s very difficult to describe how meaningful such friendships are. They involve an instant recognition of a kindred soul–one who knows first-hand just what you’ve been through from all aspects, including physically, emotionally, mentally, socially, spiritually, when cancer so rudely knocks at your door. These are folks who truly “get it,” to whom you immediately and without hesitation find yourself opening your heart and confiding the most private thoughts and concerns in a way you never could, nor wished to do so with your loved ones, in your reflex to protect them from your darkest thoughts and fears. Such friendships are life-changing, they are life-long, and they are one of the indescribable gifts that can give even the most difficult lives meaning. And yet. When your lifelong friend’s life ends far too soon—and due to the very reason that brought your life paths together when they otherwise never would have crossed—what then?

It’s now been more than 8 years since I’ve stepped into the role of an advocate. And with each year comes an increasing wave of devastating news. The terrible truth is that this should not have been unexpected for we who are cancer survivors and research advocates. For those of us affected by breast cancer, for example, we know that HER2+ and triple negative/basal-like breast cancer subtypes are associated with early relapse risk. And we know that ER+ tumors are associated with persistent late relapse risk beyond 5 years, with up to one-third of patients recurring potentially decades after active treatment. Yet every single time I learn that one of my advocate sisters or brothers has developed metastatic disease, I’m blindsided. And worse, when I receive the terrible news that a friend with stage IV cancer has passed, I still somehow allow myself to be blindsided yet again. After all, for my friends with metastatic breast cancer, I knew that they did not have curable disease. Each time, we prayed that their treatments would lead to “no evidence of disease” (NED) and that this would last indefinitely–or until additional, much more effective treatments became available. And for some friends with stage IV disease, they have remained with NED for several years. Others have sought new clinical trials after their cancer became resistant to their current treatment and were able to maintain stable disease for quite some time, sometimes for years—and if they became resistant to that agent, some were able to enroll on another clinical trial. And yet. There have been more of those times when, after seeing my friends year after year at the same conferences or grant review sessions, they suddenly were not there. Or they were, yet it was impossible to deny how frail they appeared, how very sick they were, that their cancer had become more adept at resisting treatment. And perhaps the most soul-shattering times were those when, after speaking with a friend who seemed to be doing extraordinarily well with her new treatment, we learned very shortly thereafter that she was no longer with us. Each and every time, I’ve been blindsided by their deaths; I’ve been lost, angry, completely unaccepting of their loss from this world.

When undergoing my active cancer treatment for Hodgkin’s and, later, for breast cancer, I often worried about my oncologists and the oncology nurses who spent so much time with us, who supported us at the scariest times of our lives, who provided comfort and strength not just to we as patients but to our families as well. Both of my oncologists and their oncology nurses essentially became honorary family members, as they did for so many others whom they treated day in and day out, year after year. How were they able to form such powerful, caring relationships, yet learn how to cope with their patients’ deaths, the deaths of far far too many patients? Fortunately, in more recent years, there has been increasing discussion and recognition about the impact of such repeated losses and the need for improved resources and support for oncology professionals. As noted in Cancer Therapy Advisor, “Everyone who enters the field of oncology knows that many of their patients will die, but foreknowledge is not protection against the cumulative effects of loss.” I would argue that the same is true for cancer research patient advocates, particularly for those of us who have been actively engaged for several years and are experiencing what has been described as “cumulative grief”–the compounding emotional, physical, and spiritual responses to repeated exposures to profound loss. Just weeks ago, upon learning of another friend’s death, I shared with a fellow breast cancer survivor that I was still reeling from the terrible news (and the awful news before that, and the devastating news before that)—and her response was direct, simple, and wise: “Deb, this is the hard part.”

That it is—and during this past year, the sheer weight of it was sometimes more than I thought I could bear. Yet it’s during those times that I try to remind myself: in addition to being advocates for cancer research, we’re here to advocate for one another, and the support we provide to our fellow advocates during these devastating times is crucial. Oncologists and oncology nurses have appropriately stressed the need for greater institutional and professional support to help them cope with their grief due to their patients’ deaths. It could be extraordinarily helpful if we, too, as dedicated cancer patient advocates, similarly received such supportive and educational resources through cancer organizations and professional societies on topics such as cumulative grief, end-of-life care, pain management, and palliative care. After all, as we know so well, knowledge is power and often provides the tools and the strength to transform even the most difficult, painful problems and emotions, including grief, into truly positive outcomes.

In addition, every time we experience these terrible losses, it serves as a stark, powerful reminder of why we became advocates in the first place. As cancer patients and advocates, we are the ones who bring a critical sense of urgency to identifying the cancer research questions that truly matter, that will have the most impact, that will ultimately lead to more cures. By working to support one another and to transform our grief into remembrance and renewed commitment to our advocacy efforts, perhaps that is the most appropriate, necessary, and powerful way to honor all of those we have lost.

“Grief starts to become indulgent, and it doesn’t serve anyone, and it’s painful. But if you transform it into remembrance, then you’re magnifying the person you lost and also giving something of that person to other people, so they can experience something of that person.”

~Patti Smith

A Postscript

It pains me to say that just 5 days after the new year, our cancer patient advocacy community has experienced yet another devastating loss.

Ellen Stovall was the Senior Health Policy Advisor at the National Coalition for Cancer Survivorship (NCCS) and a founding member of the Institute of Medicine (IOM)’s National Cancer Policy Board.  As I posted on Ellen’s wall on Facebook, she was a shining light to so many of us, and it is impossible to articulate the profound difference she has made for cancer survivors in this country. She spoke profoundly and powerfully on the need for further knowledge about the very serious late effects that can result from cancer treatment. Though I never had the honor of meeting Ellen face to face, I was and will always be inspired by her remarkable accomplishments in cancer survivorship advocacy.  As I’ve written about here in my blog, like Ellen, I was originally diagnosed with Hodgkin’s lymphoma, and I also went on to develop potentially life-threatening late effects of my treatment, including breast cancer and cardiac disease. It is absolutely devastating that Ellen passed away 2 days ago due to sudden cardiac complications secondary to her cancer treatments. Her passion and commitment touched so many lives, and her legacy will continue–a legacy of ensuring that cancer survivors are able to become true partners in their medical care and that shared decision-making with their medical team will help to prevent or mitigate such life-threatening late effects for many cancer patients. My first major focus as an advocate was the need for improved cancer treatments that minimized the development of serious acute and late effects while continuing to ensure optimal efficacy and positive patient outcomes. Going forward, my efforts in this critical area will be in tribute to Ellen, one of the true pioneers of the art and science of cancer survivorship.

Back in 2002, Ellen shared the following thoughts when speaking during a National Cancer Institute (NCI)/American Cancer Society Survivorship Symposium in Washington, DC, called “Cancer Survivorship: Resilience Across the Lifespan.” Fourteen years later, her words resonate just as deeply:

“So, my closing thoughts to you are, as you leave this room today to go back to the very, very important work of writing grants, reviewing grants, and helping people in your communities day to day deal with their personal journeys of survivorship, please know that the cancer advocacy community, represented by scores of organizations that were founded by and for cancer survivors, stands ready and eager to tell you our stories of survivorship with the belief that while grateful for the blessings of survivorship, for the increasing length of days, months, and years added because of new and improved therapies for cancer, that this diagnosis is filled with many punishing and adverse consequences as well as joy for living each day.

“The physician Victor Sidel once said that statistics are people with their tears wiped away. That is the way NCCS views cancer survivors, and on behalf of all of us at NCCS, thank you for your attention and for all you do for cancer survivorship.”

Thank you, Ellen, for all you have done for so many.  Rest in peace.

“Financial Toxicity” of Cancer Treatment: Have You Been Affected?

During that indescribable moment when you first learn that you have cancer, many of us experienced a virtual avalanche of thoughts, worries, and raw emotions–or, for some of us, everything came to a standstill, and a thick fog seemed to drop from the sky, blocking all sounds and sights.  Or somehow, due to the mystery that is the human brain, both may simultaneously occur, as it did in my case with both of my cancer diagnoses.  When I received my first cancer diagnosis, my initial thoughts were stark terror, confusion, denial, the wish to turn back the clock, intense fear that I  wasn’t strong enough to handle the pain and terrible side effects that may come with my treatment, a sense that I’d ultimately get through this, deep panic that maybe I was wrong–and then came the self-protective haze to help cocoon me from these far too troubling worries.  But one thought that didn’t come to mind was concern that I wouldn’t be able to pay for the costs of my treatment.  After all, I was fortunate in that I’d just started working full-time shortly after graduating from college, and I was confident that my insurance would immediately provide coverage for these costs.  Silly girl: oh, how wrong I was.

For this month’s special edition of Evidence-Based Oncology’s “Cost and Value Edition,” I was asked to contribute a piece from my patient perspective concerning the financial toll that cancer treatment takes on so many patients.  As I began to compose the article, I found myself describing a soul-shattering confrontation I had with my insurance company as a stage III Hodgkin’s lymphoma patient at the age of 22–an experience I’ve never written about before since it was so upsetting, yet one that almost certainly will resonate with many of you who have been diagnosed with cancer.  But as I note in this piece, as terrible as that experience was, so many cancer survivors have gone through–and more and more are currently experiencing–far worse.  Because the fact is that due to the ever increasing costs of cancer treatments, particularly in this genomic era when the cost of one targeted agent may be upwards of $10,000 per month, such rising costs together with increasingly restrictive health insurance coverage, expensive deductibles, and increasing specialty visit and drug co-pays have created “financial toxicity,” an adverse effect with serious implications that may lead to changes in treatment-related decision-making, higher rates of nonadherence with oral chemotherapy drugs, and decreased overall quality and, potentially, length of life.

As I noted in the article, during this year’s American Society of Clinical Oncology (ASCO) Annual Meeting, I was struck by the fact that the phrase “financial toxicity” suddenly appeared to be on everyone’s lips.  I remember appreciating that this very real adverse effect of cancer treatment finally had a name—yet also thinking that though the term may be new, the condition itself was not.  Importantly, however, the crucial difference now is that an increasing number of oncologists, patients, advocates, and other stakeholders are speaking about this openly, honestly, and effectively and actively working on measures to prevent or better manage this serious toxicity of cancer.  Please click here to read my patient perspective in this month’s edition of Evidence-Based Oncology: “Financial Toxicity: a New Term, but Not a New Reality for Many Cancer Patients.”  And please consider sharing your thoughts here on this serious issue.

Empty Inside

Like every other woman I know, I have always HATED going to the gynecologist.  It’s uncomfortable, and though I shouldn’t feel this way, I find the whole thing embarrassing.  But the first time I had my annual visit with my gynecologist after having undergone my bilateral mastectomy was … the … absolute … worst.

For weeks in advance, I dreaded the appointment.  And on the day of the appointment, I was in full-blown pity party mode.  But I had what I think are damn good reasons for feeling sorry for myself—reasons that I typically push away or fully repress, but that refused to be ignored that day.  This was going to be the first visit when the “breast exam” really wasn’t going to be a true breast exam—because I no longer had “real” breasts.  Rather, I had reconstructed breasts with implants: my plastic surgeon did a phenomenal job, and with all seriousness, my oncologist said the results are among the best he’s seen.  Dare I say, in the words of Sidra during the Seinfold episode called “The Implant,” they’re “spectacular.”  But they’re not “real.”

I also dreaded sitting in the waiting room, where there almost always was at least one pregnant woman waiting for a prenatal visit with the Ob/Gyn.  Thanks to the chemotherapy that I’d received for Hodgkin’s lymphoma in my early 20s, I’d learned many years later that I wasn’t able to conceive.

So I had reconstructed breasts, and I couldn’t have children, so the whole idea of having to go to the gynecologist felt ridiculous, and that made me angry.  Of course, I knew that I still had to have my annual visits for optimal health, but I felt odd about the whole thing, like I was an imposter.  So I was resentful, irritated, and worst of all, very very down, because all of this made me feel empty inside.

But the visit itself was even worse than I expected.  It began as it always does: there was a pile of paperwork to fill out, something that always annoyed me, because I’d been a patient with the same gynecologist for over 20 years, but they still made me complete it all over again every year.  And then there was the never-ending wait.  I liked my gynecologist a great deal as a person: in fact, he was a family friend.  But not once was I taken into the exam room at the scheduled time of my appointment.  And when I finally did get into the room and changed into that terrible gown, I always had another lengthy wait—but this time wearing only the gown, which made this second wait that much worse than the first.

So I finally walked into the exam room, changed into the gown, sat down, and prepared to wait.  A nurse typically came in before the doctor to ask about prescriptions and to take the patient’s blood pressure.  When one of the nurses finally entered my exam room, I was relieved because I just wanted the whole thing to be over.  And then she said it.  She was holding my chart and some forms and, with barely a glance at me, she plopped my chart on the counter.  She then hurriedly tried to hand the forms to me, but I was too busy trying to keep my gown closed with both of my hands.  I reluctantly let go with one hand to take the papers, as she said in an obviously distracted, hassled tone, “So as you know, of course, the top form is for your annual mammogram …”  What?  Did she really just say that to me?  I looked down at the paper, which was indeed an order for a mammogram.  As I tried to hand it back to her, I said, “Excuse me, but I won’t be needing this, as you can see from my chart.”  She looked puzzled, but instead of opening my chart, she said, “Of course you do.  You’re in your 40s, so as you know, you need a mammogram every year.”  (Okay, if you’ve read my blog before, you know that I take serious issue with that statement, since there is no evidence of benefit for women in their 40s of average risk, yet there is evidence of potential harms associated with mammograms at that age.  But I digress…)  Considering the mood that I was in, I’m proud of myself that I didn’t immediately fly off the handle.  But I was furious.  I looked at her and waited until she finally looked me in the eyes.  “No, I do not.  If you had read my chart, you would have seen that I do not have breasts.  They took all of my breast tissue, so there is nothing to conduct a mammogram on–except perhaps my silicone implants, but that wouldn’t make much sense, would it?”  Unbelievably, it wasn’t clear whether she heard me, so I tried again.  “The most recent records in my chart should include a note from my oncologist about my recent breast cancer diagnosis.  And it should also include surgical records about my bilateral mastectomy and immediate reconstruction.  Without having any breast tissue, I really don’t think that this mammogram is necessary, so I ask that you take this back, please.”  She accepted the piece of paper, mumbling “sorry” under her breath, and then simply walked over to the wall to grab the blood pressure cuff.  She asked me absolutely nothing about my breast cancer diagnosis, not the type or stage, whether it was ER, PR, and/or HER2+, what type of surgeries I’d undergone, which specific chemotherapy drugs I’d received, nor whether I had received radiation.  Even when she then reviewed my current medications, she did not ask whether I was taking Tamoxifen or an aromatase inhibitor should my cancer have been ER+.

When she finally did speak, it was to ask when my last period was–more solid evidence that she had not even taken a glance at my chart.  After all, it was my gynecologist who had broken the news to me that my original chemotherapy had taken my fertility.  As I struggled to remember the last time I’d menstruated, she became impatient and said that I could “just estimate.”  My response: “I’m not trying to remember a specific day from last month, since it’s actually been a few years.  But I honestly cannot remember which year it was.”  No response from Nurse Ratched.

And the icing on the cake …  Remember when she picked up the blood pressure cuff?  She immediately went to my left side and went to grab my left arm.  I stopped her and said, “Look, I’m not trying to be difficult.  But please take my blood pressure from the right side, not the left.”  She simply raised her eyebrows, waiting for an explanation.  “My breast cancer was in the left breast and in the sentinel node, so the surgeons had to remove several lymph nodes.”  Eyebrows remained raised, waiting for more information to try to make some sense out of what her patient was rambling on about now.  “I don’t know how strong the evidence is.  But my surgeons asked that I never have my blood pressure taken on the left side.  They explained that because some of my lymph nodes were removed, I was at risk for developing lymphedema.  Because blood pressure cuffs constrict tissue, some suggest that it may cause or worsen lymphedema.  So please take my B/P on the right side.” She finally lowered her eyebrows, moved to my right side, and took my blood pressure.  With no small relief, I’m sure, she then felt she was done with her “difficult” patient and headed to the door.  But before she fully escaped, I called after her and pleasantly asked, “Could you please make a notation on my chart that my blood pressure needs to be taken on the right side?”  She briskly nodded her head and left the room.

I immediately put my head in my hands and tried to keep the tears from coming.  This nurse was clearly in the wrong profession, and I knew that the encounter I’d just experienced really said nothing about me, but spoke volumes about her.  But I was absolutely livid,  embarrassed, upset–and even emptier inside than I had felt just a few minutes before.

When my gynecologist entered the exam room about 15 minutes later, I’d had enough time to compose myself, and he came in with his customary warm smile, friendly handshake, and good wishes to my family.  He also spent several minutes asking about how I was holding up after my diagnosis, discussing the treatments I’d received thus far, and talking about my options concerning Tamoxifen versus an aromatase inhibitor.  He obviously knew a great deal about my diagnosis before he stepped into the room, was genuinely concerned, and provided me with the same exceptional care that he always does.  So despite the terrible experience I’d just had with one of his staff members, I did continue with my gynecologist.  However, on the spot, I decided that I would never see him in this specific office location again.  Rather, I’d vastly prefer to make the substantially longer drive to another of his office locations, because I absolutely refused to have any dealings with that nurse again.  I truly hope that after she’d walked out of my exam room, she thought about our encounter and realized that she owes her patients so much more: just for starters, actually LOOKING at the chart, LOOKING at her patients in the eye, LISTENING to her patients, and treating us with the RESPECT and the concern that we deserve.  Sadly, however, I very much doubt that’s the case.  I’d say it’s far more likely that she started shaking her head and rolling her eyes immediately after closing my exam room door, mumbled under her breath about that “pain in the ass” she just had to deal with, and then briskly went on to ruin her next patient’s day.  In retrospect, though I’d been struggling with feelings of emptiness on that terrible day, it was actually the nurse who was truly, profoundly empty—empty of compassion, empty of empathy.  My only regret is that I didn’t tell my doctor about his nurse’s atrocious, insulting, unprofessional behavior.  However, I sincerely hope that if she didn’t learn anything from our encounter, her behavior eventually caught up with her and that she’s now in a different profession for which she is better suited—such as a clerk at the DMV.

A Woman’s Right to Choose: Not What You Think

No, this is not a blog posting about pro-life versus abortion rights.  The title above is an intentional double entendre about another very serious topic: the rights of women (and men) with breast cancer to make their own choices about their treatments.

Most of us who have been diagnosed with breast cancer will tell you that friends, loved ones, and acquaintances have made well-meaning statements that we found uncomfortable, upsetting, or sometimes plain infuriating, such as:

“I know how you feel.”  (This one makes me particularly crazy: “No, you don’t, and I’m happy for you that you don’t.”)

“You’re going to be fine.” (My superstitious thoughts: “Please, God, let me be, but don’t say that out loud because that might jinx my chances.”)

“I had a second cousin twice removed who had the same type of cancer.”  (My response: “I’m so sorry!  How is she doing following her treatment?” The answer: “Oh … Um, she had a recurrence, and she passed away several years ago.”)

“My friend lost all her hair days after her first chemo treatment, and she was always so sick for days afterwards.  I would never want to go through chemotherapy.” (My response: “How long ago was she treated?” Her answer: “Oh, probably 25 years ago or so.” [Really?  The point: There are now remarkable antinausea medications available that prevent nausea and vomiting for many cancer patients.  Twenty-five years ago, there were very few medications (called antiemetics) that were used for this purpose, and the one I received during my chemotherapy for Hodgkin’s lymphoma back in the ’80s, called Compazine, was NOT very effective.])

“Oh, you should … try  that new macrobiotic diet … use that new treatment I saw on the Internet …  make sure that your acidic/alkaline balance is correct … try that new supplement…”

My point is this: Of all the quotes above, as offensive as many of them are, there is one word that shouts out at me, since it is often the most hurtful, confusing, and potentially dangerous one that a newly diagnosed breast cancer patient may hear.  The word is “should.”  I was fortunate in that my husband, parents, sister, close friends, and work colleagues never questioned the many complex treatment decisions I made following my breast cancer diagnosis.  But I know first-hand that many newly diagnosed breast cancer patients hear this word over and over again.

We all know what the term means, but looking at its formal definition is helpful in explaining why I and many fellow cancer patients despise it so (as do many patients with other serious conditions): “Should” is “used to indicate obligation, duty, or correctness, typically when criticizing someone’s actions.”

Imagine how it feels when a newly diagnosed breast cancer patient hears any of the following from a loved one or a friend:

“You really should have started getting regular mammograms sooner than you did.”

“I don’t understand why you’re just having a unilateral mastectomy.  You should go with the bilateral procedure.  After all, aren’t you afraid that you might get it in the other breast and have to go through this all over again?”

“Why aren’t you having reconstruction? You should do so now, since you’ll probably regret it later if you don’t.”

“You really should change your diet and exercise more.  Your cancer is surely a symptom that your body is out of balance.”

What do all of these statements have in common? First, of course, they are all vomit-inducing.  But they all are also showing disapproval of the breast cancer patient’s priorities, needs, life choices, and the decisions she (or he) has made on these very complex issues.  They not just imply but boldly, insensitively state that the patient is misguided, has made a mistaken choice, and really should listen to the guidance of others rather than her or his own mind and heart.

As I noted above, I was surrounded by love and support, and I was never questioned about my treatment choices.  When talking through my various options with my husband, and I directly asked him for his opinion about which surgical approach we should take, his response was, “This is 100% your decision.  Whatever you and your doctors together think is the right choice IS the right choice.”  But when I became a peer mentor for newly diagnosed patients shortly after I’d completed my active treatment, I was horrified to discover that many women were strongly questioned about their treatment choices by their loved ones.  I remember one young woman in particular.  She was diagnosed in her early 30s with stage 3 HER2+ breast cancer.  She was painfully shy, was absolutely terrified about her diagnosis, and had an extremely difficult relationship with her family.  She explained that her parents and her sisters were pushing her to change her treatment plans and were not at all supportive of her decisions.  She was so upset by this that she said she was considering “taking the easy way out” and simply following their wishes.   But thankfully, after speaking again with her doctors and connecting with several fellow breast cancer survivors through our regional cancer support organization, she was able to step back and realize that this was completely her own decision and one that must not be swayed by others’ wishes, concerns, possible biases, and potential lack of information.   She had made her decision in concert with her physicians, and based on the evidence, her treatment choices were what was best for her.

Those who love us the most may have very strong opinions about what they feel is best for us.  But it’s possible that they do not have all of the necessary information to make a truly informed decision.  Or they may have misinformation or misunderstanding of the facts.  And even if they are extremely knowledgeable of the different types of breast cancer and understand the current treatment guidelines, the fact remains that it is the patients themselves and their medical teams who must make these extremely difficult decisions based on what is best for the patients.

This is why I wish that the word “should” would remain unspoken by loved ones and friends of breast cancer patients.  And now I’m going to break my own rule this one time by ending with a quote with the “S-word,” but that beautifully captures the intent of this blog.

“Whatever words we utter should be chosen with care for people will hear them and be influenced by them for good or ill.”

~Hindu Prince Gautama Siddharta, the founder of Buddhism

Has anyone ever used the word “should” with you, questioning your decisions concerning treatment of your cancer or other serious medical condition? If so, how did you handle the situation?

 

On NOT Looking to Melissa Etheridge, Sheryl Crow, and the AARP for Life’s Guidance

I wasn’t going to write about this until I calmed down a bit and had a more rationale, less irate perspective.  But it’s been a few weeks now, I’m still angry … and I found an absolutely perfect quote from masterful songwriter and poet Bob Dylan that I couldn’t let go to waste.  So here it goes …

“It’s not a good idea and it’s bad luck to look for life’s guidance to popular entertainers.”

~Bob Dylan                                                                                                                                               

I truly wish the AARP (American Association of Retired Persons) had listened to this very sage advice.  When I came across the recent article in AARP The Magazine that began with the title, “Sheryl Crow and Melissa Etheridge Beat Cancer and Heartbreak,” the warning bells went off immediately in my head.  And then I read the next line: “The music legends teach us a thing or two about living with joy.”  My vision went red.

In just 2 lines, before the article even began, AARP’s magazine managed to perpetuate dangerous myths and to condescend to every one of their readers: women, men, those who have had or are currently receiving treatment for breast cancer, those who have lost loved ones to this terrible group of cancers, and those who will be impacted by breast cancer in the future.

Let’s start with the statement “beat cancer.”  It’s wonderful that both of the singers are doing so well and that their treatment has been effective for them to this point.  But tragically, approximately 25% of women with breast cancer have a recurrence, where the cancer has returned—and for women with estrogen-receptor positive (ER+) breast cancer, nearly 33 percent experience a recurrence.  Furthermore, over half of recurrences for ER+ breast cancer are detected more than 5 years following their original treatment, including after decades, as opposed to other breast cancer types that tend to recur within 5 years of the original diagnosis.  Research suggests that late relapse is most likely due to “tumor dormancy,” where there is a prolonged phase between cancer treatment and detected evidence of disease progression.  It’s thought that cancer cells that were able to escape the patient’s initial treatment are able to survive by hiding in a latent state for years or decades, ultimately coming out of dormancy and leading to incurable breast cancer metastases.

So the important truth here is that we currently have no way of knowing who has “beat” breast cancer.  As Dr. Susan Love has explained, “Breast cancer can be cured.  In fact, we cure three-quarters of breast cancer; the problem is when somebody is diagnosed with breast cancer, we can’t tell that woman that she is cured—until she dies at 95 of something else.  So, we know we cure breast cancer, but we never know if any one particular person is cured at any one time.”

Crow was reportedly diagnosed with stage I ER+ breast cancer.  Although Etheridge has disclosed that her cancer was stage II and that she has a mutated BRCA2 gene, I was not able to locate her type of breast cancer.  Though I sincerely hope that neither ever develops a recurrence, we simply cannot know whether either woman is “cured” of her breast cancer.

And this brings me to the second line and the accompanying image, partially titled “Lessons for All of Us.”  Seriously? From two people who happen to have the stage because they’re famous singers?  As you’ll see below  (and I apologize, since I suspect many of you are just as weary of seeing this as I am), the image is accompanied by “words of wisdom” from both of the singers.  I have to say that Crow’s comments were comme ci, comme ça.  I do wish that she’d used the passive rather than the active voice when discussing screening mammograms.  In other words, rather than saying “I recommend …” it would have been much more appropriate to say something along the lines of this: “It’s recommended that women at average risk for breast cancer receive regular screening mammograms beginning at either 40 or 50 years of age based on their health team’s guidance and their personal preference.  And women at high risk may be advised to begin receiving regular mammograms at age 40 years or younger.”  I recognize that this is not nearly as “pithy” as what Crow did say–and as a writer, I’m typically not a fan of the passive voice, but this is one of those examples where it’s truly appropriate.  This may have been an opportunity to emphasize what the evidence has found and to contribute to the ongoing conversation by noting the current disagreement in screening mammography recommendations between the U.S. Preventative Services Task Force and the American Cancer Society–IMHO, an opportunity that was lost.  But for the most part, Crow’s comments were relatively thoughtful, whereas those of her friend, Etheridge, were, quite frankly, appalling, condescending, and downright dangerous.

Let’s start with the very first quote in the image from Etheridge: “Take Charge: This was of my own doing, and I take responsibility. When I got my body back into balance, the cancer disappeared.”  But here’s the thing: Breast cancer is nobody’s fault.  And her cancer didn’t “disappear” because she made healthy changes for her body:  rather, there is no longer any evidence of disease because she received treatment for her cancer.

And you don’t have to look far to find similar statements she’s made in the past.  In an interview with More Magazine, entitled “Melissa Etheridge’s battle with breast cancer,” (why always with the war metaphor?), she was asked what she is doing differently now in terms of her emotional and physical health.  Her response: “I have a very strong belief that this cure that we’re looking for is inside us.  The cancer is just a symptom of our bodies being out of balance and the cure is to understand health. It’s to understand our bodies and our spirits—our souls—better.”

Okay, let me see whether I’ve gotten this straight.  Cancer as “just a symptom”? because we’ve allowed our bodies to become “out of balance”?  Has Etheridge ever heard of “blaming the victim?”  I repeat: breast cancer is nobody’s fault.  The main risk factor for developing breast cancer is this: simply being a woman.  And the fact is that our risk for breast cancer increases as we become older.  I’ve known several wonderful women now who were remarkably fit, were extremely careful of what they ate, who ran or swam or went to the gym regularly, who developed breast cancer– stage I, II, and III and some who later developed stage IV disease–though their bodies “were in balance.”  Was “understanding health” the “cure” for their metastatic breast cancer?  I think not.

From “AARP The Magazine”

And here’s another “quotable quote” from Etheridge:  “To Test or Not to Test:  I have the BRCA2 gene but don’t encourage women to get tested.  Genes can be turned on and off.  I turned my gene on with my very poor diet.”  Did she really just say that?  This statement is misleading, offensive, and completely irresponsible.  Unfortunately, the sad truth is that some folks listen to celebrities and take what they say seriously—no matter how inaccurate or ignorant.  This means that Etheridge has a responsibility when she’s speaking to the public.  She has every right to tell her story and to express her opinions—but while making it clear that they are just that, her opinions.  She is not a doctor, yet what she has done is akin to giving “medical advice” that is woefully inaccurate.  She has no right to discourage women from getting testing: the decision of whether to test or not is a very personal and complicated decision that must be based on the evidence, their medical team’s and a genetic counselor’s guidance, and their specific situation.  Etheridge also shows a complete lack of understanding concerning the role that BRCA2 gene mutations play in breast cancer.  The BRCA2 gene mutation does not get “turned on or off” due to choice of diet.  Rather, we have 2 copies of the BRCA2 gene and the BRCA1 gene, which belong to a class known as “tumor suppressor genes.”  The genes encode instructions for making proteins that are involved in repairing damaged DNA.  It’s believed that the mutated BRCA1 or BRCA2 genes’ mutated or missing BRCA protein is not able to help repair damaged DNA or mutations in other genes, causing accumulation of such defects, in turn enabling cells to divide and grow uncontrollably, forming a tumor.  Hundreds of BRCA1 and BRCA2 mutations have been identified, with many associated with an increased risk of breast cancer.  Those who are born with such mutations of the BRCA1 or BRCA2 gene have an increased risk of breast, ovarian, and other cancers due to lack of a working copy of one of the genes.   So Etheridge’s extremely misleading statement is dangerous for several reasons, since it may:

• Cause those at high risk to blame themselves for developing cancer that was due to a genetic predisposition.
• Mislead them about an ability to prevent cancer solely with changes in diet.
• Prevent some from pursuing genetic testing, which in turn may have resulted in their receiving medical interventions that have been found to expand the lives of those with BRCA mutations.

From “AARP The Magazine”

I forced myself to finish reading the entire article, but the last line was another kick in the teeth–a yeah-rah-rah moment: “Cancer, [Crow and Etheridge] agree, has become something they never imagined. ‘A gift,’ they say, almost in unison.”  Perhaps they should have posed in cheerleading outfits with pom-poms rather than those leather jackets?

I do need to pull back on the sarcasm for a moment.  To her credit, Crow has lent her name to the Pink Lotus Imaging Center.  On their website, the Pink Lotus Imaging Center is described as “a comprehensive and integrative breast center exclusively dedicated to the prevention, screening, diagnosis, and treatment of breast cancer.  Headquartered in Los Angeles and founded in 2007, our first location in Beverly Hills was unveiled in 2009.  Since then, we have become a respected leader and innovator in the field of comprehensive breast care.”  And their mission statement is very impressive, warm, and reassuring:

“Our organization was founded with a strong dedication to one clear purpose: To provide the best breast care medically and technologically possible while providing our patients with an environment where they can feel at home; where prevention and wellness matters as much as life-saving treatment; where patients are treated like human beings, not numbers; where integrative medicine is not just a marketing slogan but rather the essence of what we practice; and where women are provided with security and confidence when they need it most. We pride ourselves on the simple fact that our organization’s DNA  was custom-tailored with one person in mind – you!”

But with that said, it’s crucial that both Etheridge and Crow understand and respect the responsibility they have to present their opinions as opinions, not facts or advice.  AARP The Magazine notes that “The two women now say that battling the disease and coming out on the other side deeply transformed them, shaping them into who they are today: survivors, role models, and advocates for social awareness and change.”  Let’s hope that in the future, they’ll both be responsible advocates who can genuinely and helpfully contribute to the conversation.  Otherwise, perhaps Etheridge in particular should stick to the singing.  And until AARP better understands its responsibility to its members and readers as well, perhaps it’s time for those of us who are 50 years of age and older to consider looking for another organization who shows more respect to its members and to the facts.

Update:

A “Non-Apology” Apology from Melissa Etheridge and AARP: Did We Expect Any Less?

Concerning the recent, highly deserved backlash unleashed in response to  AARP The Magazine’s  article with Melisa Etheridge and Sheryl Crow, some of my fellow advocates have eloquently raised a critical point.  They’ve stressed the importance of understanding and remembering the many ways in which those of us who have received this terrible diagnosis form beliefs and make choices to regain a semblance of control.   As an advocate, my first role was serving as a peer mentor for newly diagnosed women with breast cancer.  Like Melissa Etheridge, some focused much of their attention on diet and exercise to try to retain or regain some control after feeling that their world had rocked off its axis.  In many ways, I took steps to try to protect myself as well after my own diagnosis: eventually, my road toward getting back a sense of control took the form of becoming actively engaged as a breast cancer research advocate.  Of course, everyone’s road is different, and everyone’s choice is just that, a choice.

Melissa Etheridge undoubtedly shared many of the same fears that so many of us do—and I understand that some folks tend to forget that in the aura of her celebrity.  Yet with that said, as I discussed in this blog post, I feel very strongly that with her celebrity comes Responsibility, with a capital “R.”  As of today, she has 64.8 thousand followers on Twitter and  462,204 likes on Facebook—and the AARP’s Facebook page has well over 1 million likes.  So when Etheridge shares what is framed as advice, for better or worse, she has an audience of millions.   As a woman who has had a terribly frightening diagnosis, she is absolutely entitled to believe whatever she needs to to get through.  But she also needs to understand that when she speaks, so many (in my humble opinion, far too many) people listen—so I sincerely hoped that she would learn from this and would be careful to frame her opinions as her own, rather than as Gospel.

I also do feel that the AARP and “AARP The Magazine” holds the lion’s share of the responsibility here.  Their editorial team made a grave error when determining how to frame this article, dangerously misleading their millions of members and the general public.  Unfortunately and upsettingly, they still haven’t recognized this.  Since this backlash began, the only statement I see that has been issued by AARP is the following, as quoted in “USA Today”:

“Robert Love, editor in chief of ‘AARP Magazine,’ said in a statement that his magazine didn’t ‘take a position or prescribe medical recommendations for breast cancer testing or treatment’ and “did not intend for the views expressed in the article to be interpreted as medical advice.”  Interesting comment, since the image included with the article was entitled “How They Beat Cancer … LESSONS for All of Us.”  In addition, AARP The Magazine’s Facebook page still has a picture of Melissa Etheridge and Sheryl Crow as their cover photo, and the FB Profile Picture also shows the two singers from the magazine’s cover.

And when Etheridge was asked about the backlash in this same “USA Today” article, her response was that “she’s been misunderstood’ and that “I was sad there was such a negative response to what I said.”  She also stated that “I knew all along there would be people who disagreed.  I never wanted that to stop me from saying anything.  I can’t control the way people understand something.”

 

In another article, published in “Dame Magazine,” where she was again questioned about the backlash, Etheridge responded with the following: “People think it’s dangerous for me to say, ‘Hey, maybe there’s more than just this one way of looking at cancer,’ and they think that’s dangerous because they believe in science, and I understand that totally, and 11 years ago, I was with them. I understood that. In my discoveries, I think that maybe if someone is confronted with this, that maybe this other thought might be helpful for them. For some people, but not all always [Laughs.].”

She was also asked about why she engaged in a Twitter war of words with blogger, “Boing Boing” editor, and breast cancer survivor Xeni Jardin, whose recent blog has this wonderful title, “AARP runs vomit-inducing, quackery-filled breast cancer piece with Sheryl Crow, Melissa Etheridge.”  Etheridge noted, “The reason I did that was it seemed like, all of a sudden, in that one day, I got just a barrage of really awful, awful stuff. Like people standing up on a wall going, ‘Na-na-na-na-na-na. You’re awful,’ and I was like, what? Why do they want to pick a fight with me? I don’t understand, and so I was reading everybody, and some  just want to be mean. Some people do, yet Xeni is a cancer survivor herself. I have always wanted to present myself as, ‘This is just my experience,’ and I felt I was being misunderstood, and I love real conversation, not just okay, I answered this person’s questions. This company put it in a magazine, and then they’re making their comments on it, but no, talk to me. What’s your question? What don’t you understand? This is how I feel, and you’re going to believe what you believe. Just why put so much bitterness and ugliness out toward me? I don’t understand that. Help me understand that, and we can have a conversation about it.”

Heavy sigh.  So once again, it’s not about the evidence but about poor misunderstood Melissa Etheridge.  Yes, for those of us who are so concerned about the damage done by this article, who still and will always “believe in science,” our true goal here was simply to “pick a fight” with Etheridge, and yes, we really do “ just want to be mean.”  As Etheridge said, “What?!”  Really, is there no limit to this woman’s solipsism and narcissism?  This may be extremely surprising to Etheridge, but no, not everything is about her.  The point, again, is that she’s used her all-too-large platform to spread falsehoods wrapped in the guise of “advice” by AARP in their “special health issue,” to millions who take the words of celebrities seriously.  This is about those millions.

So when all is said and done, no apology.  Not a word about the facts.  Not from AARP.  Not from Etheridge.  Not from “AARP The Magazine.”  All we’re left with are Etheridge’s and AARP’s “Non-Apology Apologies.”   In Etheridge’s case, I wish her well, but the only “lesson” that she’s taught “all of us” is that clearly, from her perspective, this backlash wasn’t due to her and the AARP’s irresponsibility.  Nope, to her obvious regret, the problem is that she cannot control how we think, nor how we understand what she has to say.   So I’m going to ask again, ever so politely: Melissa, please, please  stick to the singing.