Ode to Jody

 

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This Wednesday, May 18th, 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.”

Jody2

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.”

Jody and Katie

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.

wings

 

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.

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“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.

Ellen Stovall

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.

My October Blues

October used to be one of my favorite months: the brilliant blue sky, the sharp crispness of the air, the beautiful turning of the leaves, and the fact that my birthday was just a few days before Halloween.  But 8 years ago, that all changed.

Back in October 2007, I had finally completed my chemotherapy.  I’d finished the uncomfortable tissue expansion sessions that were part of my reconstruction.  And the tissue expanders had finally been replaced with my silicone implants. But on that day, the fact was that I was still healing, completely exhausted, in the throes of so-called “chemo brain,” and once again hiding my bald head beneath a scarf to protect my scalp from the newly cold temperatures.  I’d just stepped into the grocery store and was dragging myself from aisle to aisle, trying to find something–anything–that might appeal to me, since everything I ate still tasted like it was thickly coated with metal.  And although I’d been wearing scarves or a wig while at work or out in public for many months, I was feeling more subconscious than usual–because everywhere I looked (and I do mean everywhere), all I could see was light pink, dark pink, muted pink, bold pink.   The yogurt, the soup cans, the magazines, the cash registers themselves, balloons (really, balloons?)—they were all covered with pink ribbons announcing “Breast Cancer Awareness Month.”   Of course, I’d noticed the ribbons during Octobers past, and I’d been donating to the American Cancer Society and Memorial Sloan-Kettering Cancer Center for many years. But on this day, I was seeing the ribbons with a completely different, somewhat embarrassed, and resentful perspective.  Perhaps selfishly, thanks to those Pink PINK Ribbons RIBBONS everywhere, I felt like there was an immense, gaudy, Coney Island-like flashing pink arrow in the air pointing directly at me.  And just minutes later, a stranger apparently did notice that strange ribbon-shaped arrow hovering over my head.  She walked right up to me in the produce aisle, leaned over, and whispered, “I like your scarf.  And I wanted to tell you that just about a year ago, I was exactly where you are today.  I’d just completed my treatment for breast cancer, my hair was just starting to grow back, and I felt like I’d been through hell and back. Was your diagnosis breast cancer, too? I wanted you to know that you’ll get through this and that you’re going to be just fine.”

She was a sweet person, and I did truly appreciate her kindness.  But I was also mortified.  I hated being so conspicuous–and quite honestly, I felt like a woman who was pregnant when complete strangers felt they had the right to touch her stomach. It was hard enough for me to go out in public every day exhausted, pale as a ghost, and without hair, hiding that fact beneath my scarves or my wig, so I essentially felt “outed,” albeit by a woman who had been through what I was experiencing and showing her support and kindness.  By the time I finally got out of the store, just the thought of a pink ribbon worsened the metal taste in my mouth.

AngryDog

Since that time, the pink ribbons in October have become more ubiquitous than the falling autumn leaves. They are at the heart of cause-related marketing, where it’s nearly impossible to get through a day in October without seeing a pink breast cancer awareness tee shirt, a pink fuel truck, pink blenders, pink guns (yes, really: guns!), pink beribboned bottled water containing BPA (a known cancer carcinogen), NFL players running onto the field in their pink gloves and socks, and on and on and on it goes.  But what many people still do not realize is that some of those companies that slap pink ribbons onto their products every October actually do not contribute to breast cancer research–or, in other cases, make contributions that are not tied to the purchase of the pink products in question.

That’s bad enough.  But in my humble opinion, there’s something much much worse–and that’s the steady stream of inaccurate, misleading, and downright false “facts” about breast cancer that appear everywhere you turn, “feel-good” story after feel-good story in every newspaper, magazine, and grocery store circular, and interviews touting how this or that celebrity “beat” breast cancer.  So this October, I’ve decided to do my best to debunk some of the myths that have become nearly as ubiquitous as those pink ribbons.

The first that immediately comes to mind is one of the most frustrating, because there are some in the medical community and a number of breast cancer organizations that continue to perpetuate this myth. You guessed it: “Mammography saves lives.” Or said another way, “mammography can only help women and couldn’t do any harm.” Believing these statements leads to a dark slippery slope paved with additional myths, falsehoods, and misunderstandings:

“She must not have gone for her annual mammograms: otherwise, she wouldn’t have been diagnosed with metastatic breast cancer.”

FALSE!

“After all, no one dies of breast cancer anymore.”

FALSE!

KomenAd with circle

Remember the 2011 ad above from Susan G. Komen–which has been described as the “most widely known, largest, and best-funded breast cancer organization in the United States”?  (The red circle cross-out is mine.)

The good news is that when this ad was released, Komen came under fire from scientific experts and knowledgeable patients and advocates due to its misleading statistics and its “blame the victim” message.  In fact, two professors from the Center for Medicine and the Media at The Dartmouth Institute for Health Policy and Clinical Practice, Lisa Schwartz and Steven Woloshin, published an essay in the British Medical Journal (BMJ) (2012;345:e5132) stating that Komen’s 2011 Breast Cancer Awareness Month campaign “overstates the benefit of mammography and ignores the harms altogether.  A growing and increasingly accepted body of evidence shows that although screening may reduce a woman’s chance of dying from breast cancer by a small amount, it also causes major harms, say the authors.  Yet Komen’s public advertising campaign gives women no sense that screening is a close call.  Instead it states that the key to surviving breast cancer is for women to get screened because ‘early detection saves lives. The 5-year survival rate for breast cancer when caught early is 98%. When it’s not? 23%.’ This benefit of mammography looks so big that it is hard to imagine why any woman would forgo screening.  But the authors explain that comparing survival between screened and unscreened women is ‘hopelessly biased.’ For example, imagine a group of 100 women who received diagnoses of breast cancer because they felt a breast lump at age 67, all of whom die at age 70. Five year survival for this group is 0%.  Now imagine the women were screened, given their diagnosis three years earlier, at age 64, but still die at age 70.  Five year survival is now 100%, even though no one lived a second longer. Overdiagnosis (the detection of cancers that will not kill or even cause symptoms during a patient’s lifetime) also distorts survival statistics because the numbers now include people who have a diagnosis of cancer but who, by definition, survive the cancer, the authors added.  If there were an Oscar for misleading statistics, using survival statistics to judge the benefit of screening would win a lifetime achievement award hands down, they wrote.”

Even more alarmingly, these authors conducted a survey where they “found that most US primary care doctors also mistakenly interpret improved survival as evidence that screening saves lives.  Mammography certainly sounds better when stated in terms of improving five year survival – from 23% to 98%, a difference of 75 percentage points. But in terms of its actual benefit, mammography can reduce the chance that a woman in her 50s will die from breast cancer over the next 10 years from 0.53% to 0.46%, a difference of 0.07 percentage points.  The Komen advertisement also ignores the harms of screening.  The authors noted that for every cancer detected by mammography, ‘around two to 10 women are overdiagnosed.’ These women cannot benefit from unnecessary chemotherapy, radiation, or surgery.  All they do experience is harm.”

AngryCrab1

The emphasis on the term “overdiagnosed” is mine:  because overselling of screening mammography has resulted in an enormous increase in the number of women who are treated for breast cancer–but most of whom would never have developed breast cancer if left untreated.  The fact is that for women of average risk, screening mammography has led to a dramatic increase in the diagnosis of Ductal Carcinoma in Situ (DCIS).  DCIS, which is an overgrowth of cells in the milk ducts, lacks the ability to spread, and more are beginning to argue that its description as “breast cancer stage 0” is a misnomer—because DCIS is not in fact cancer.  Rather, as breast surgeon and breast cancer oncology specialist, Dr. Laura Esserman, has described it, DCIS “is a risk factor for cancer. Many of these lesions have only a 5 percent chance of becoming cancer over 10 years.”   However, because there is not yet a way to accurately predict which patients are at most risk of progression to invasive disease, most cases of DCIS are treated aggressively, e.g., with breast-conserving surgery (lumpectomy), radiation, mastectomy, and/or in some cases, hormonal therapy. It’s been estimated that DCIS comprises up to 30 percent of “breast cancer” diagnoses. Yet for the majority with DCIS, the precancerous lesions will stay in place (i.e., “in situ”), will not become invasive, and therefore will never pose a life-threatening risk.  The result: overtreatment, where hundreds of thousands of women are undergoing aggressive cancer treatment and at risk for such treatment’s adverse and potentially late effects when they may not have needed such treatment. (Fortunately, ongoing research is taking place, including validation studies of an OncotypeDx for DCIS, with the goal of helping to identify patients who may need less aggressive therapy or no treatment other than “watchful waiting.”)

So the story of screening mammography for DCIS is not a success story.  Nor has it been a success story in detecting late-stage disease. As Dr. Esserman has stressed, if life-threatening breast cancers began as DCIS, the incidence of invasive breast cancers should have steeply declined with increasing detection rates. However, that has not occurred.

More Myths

However, cause marketing is not the only source of misleading or inaccurate breast cancer “facts.”  Breast cancer misinformation is often compounded or reinforced by celebrities who are breast cancer survivors. Remember Melissa Etheridge’s outrageous comments in AARP Magazine, when she and her buddy, Sheryl Crow, discussed how “They Beat Cancer” and provided “Lessons for All of Us”?  (Yes, I’m still furious.)  With just the headline, 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 fortunate that both 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 original treatment, in some cases decades later, 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 the hormone receptor or HER2 status of her 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.

It was also infuriating to me when Etheridge, scientific expert that she is, said in the same interview: “This was my own doing, and I take responsibility.  When I got my body back in balance, my cancer disappeared.”  Excuse me? Breast cancer is NOBODY’S FAULT.  And no, her cancer didn’t “disappear” because she made healthy changes for her body. Sure, eating well and having a healthy lifestyle certainly is a smart choice for everyone.  But Etheridge no longer has any evidence of disease because she was treated for her cancer including surgery, chemotherapy, and radiation.

The Politics

And then there is Debbie Wasserman Schultz: since we know that if a politician is a breast cancer survivor, she’s an automatic expert on the science of breast cancer, right?  Schultz–like so many politicians before her–apparently has no use for inconvenient evidence.  When the U.S. Preventive Services Task Force (USPSTF)’s recently updated its guidelines for screening mammography based on scientific evidence, she loudly protested and politicized the issue.  In an interview with Marie-Claire last year, she was asked the following:

MC: “What do you make of the fact that so many health care organizations no longer advise young women to do breast self-exams?”

DWS: “To say that I don’t agree with recommendations that say women shouldn’t get mammograms at 40 or that self-exams aren’t necessary would be an understatement.  It is entirely appropriate and recommended to have a mammogram between 40 and 50.  If I didn’t do self-exams, I never would have found out about my BRCA2 mutation, which gave me a 40 to 85 percent chance of developing ovarian cancer by the time I was 50.  I mean, I was a ticking time bomb and I didn’t know it!  To me, those recommendations send a very strong message to younger women that they’re being written off—that they don’t matter.”

What Schultz didn’t say is that the U.S. Preventative Services Task Force recommendations stress the following: “The decision to start screening mammography in women prior to age 50 years should be an individual one.  Women who place a higher value on the potential benefit than the potential harms may choose to begin biennial screening between the ages of 40 and 49 years.”  Importantly, they also emphasize that “Women with a parent, sibling, or child with breast cancer may benefit more than average-risk women from beginning screening between the ages of 40 and 49 years.”

Schultz, joined by 61 other legislators, sent a letter to Health and Human Services Secretary Sylvia Burwell, where they asked that the department ignore the new draft guidance by the USPSTF—in other words, asking that the department ignore the evidence.  Schultz used her own story to make her case: “As a young survivor of breast cancer who was diagnosed at age 41, I am a living testament to the importance of breast cancer awareness in young women.  It is imperative that no one limits the insurance coverage of preventative options for young women, especially if they have an elevated risk.  While mammograms are not the only important part of preventative coverage, they play a vital role in detecting cancer in young women, in whom it is most deadly, and in raising breast health awareness.”

But did mammography actually “play a vital role” in detecting her cancer?  She has stated that she “had my first mammogram a few months before I found the lump” and that if the Task Force’s recommendation had been in place, she may not have had a mammogram and her own cancer would “not have been caught early.”   What’s more, she said, “We know that there are women that [sic] will die if this recommendation goes through.”  Yet here’s the thing: in a 2013 Glamour Magazine interview, she said that “My diagnosis was a couple of months after a clean mammogram. I had aggressive breast cancer, and it grew fast from the time I had my mammogram, or it was there and the mammogram missed it. Nothing is foolproof. You can’t make yourself crazy, but you have to be vigilant.”  So apparently, screening mammography did NOT detect her breast cancer.  Schultz’s own story does not support the case she has been trying to make so vociferously.

SharkComic3

Perpetuating the Myths

But something that I saw recently is probably the most upsetting of all.  On its Facebook page, BreastCancer.org shared responses from members of their Facebook community to the following question:

“It’s Breast Cancer Awareness Month.  Are there issues you feel are not getting enough attention?”

The responses concerning the topic of screening demonstrated the tremendous harm that results from the misinformation so freely distributed throughout October (and all year round). Here are just a few responses:

“Mammograms for 40 years upwards.”

 “Earlier mammograms!!!”

I began mammograms at 30 BC of questionable cysts and got Dx at age 49!  They should start mammos at age 30. Maybe have them every two years. Raising age to 50 is nuts.  I’ve had many friends Dx well before age 50.”

Earlier screening mammograms? How early? How young is too young: 40, 30, 20, 15? How many more women will be overdiagnosed and overtreated before the insanity stops?

But I do want to end my October rant on a high note.  The same BreastCancer.org blog also shared some responses concerning the critical topic of metastatic breast cancer–responses showing that there may be more and more folks who are seeing through all those pink ribbons to the truths about breast cancer:

“Stage IV Needs More!!!”

“More attention and funding to metastatic breast cancer, and less attention to ‘awareness.’  Even 3rd graders are aware!”

“Stage IV research.  Not enough of it.  Stage IV life expectancy.  Not enough of it…”

Bravo: Less attention to “awareness” and more to Stage IV and the critical need for metastatic breast cancer research funding.  So enough with the pink ribbon campaigns.  Ignore the celebrities who abuse the public platform they’ve been given to further spread misinformation.  And a big, firm wave good-bye to politicians who ignore inconvenient facts and use their power and influence to determine what’s best for us–since apparently we don’t know any better.

Incidentally, the nice woman who came up to me in the grocery store may or may not have been correct when she said, “I wanted you to know that you’ll get through this and that you’re going to be just fine.”  My breast cancer was ER+, so I’ll never know whether my breast cancer was cured–unless it recurs or I peacefully pass away of old age in my sleep.  The latter, please.

SharkComic2

A huge thank you to my sister, Ann-Dee, for these wonderful illustrations, which perfectly capture the sentiments I wanted to convey here.

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.

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.

Nurse Ratched from "One Flew Over the Cuckoo's Nest"

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.

Grumpy cat

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.

Empty

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                                                                                                                                               

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.

its_all_my_fault3

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.

Sheryl Crow and Melissa Etheridge

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"

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?

dancing-cheerleader_zJxctuBO

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.

Etheridge on Twitter

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.”

Misunderstood

 

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.”

Twitter wars

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.

A Postscript and a Tribute: To Maria

In my last blog, I mentioned a dear friend of mine with metastatic breast cancer who had just made the very difficult decision to enter Hospice.  I knew something was desperately wrong when I saw that many of my advocate friends had begun to replace their own profile pictures on Facebook with pictures of Maria.  I reached out to one of them, saying, “Please tell me that this isn’t happening.”

But it was.  Maria was nearing the end, and across the country, from California to Texas, from Ohio to New York City to Newtown, Connecticut, her friends and fellow advocates, many of us whom considered her our mentor, prayed for Maria and her family.  This Memorial Day, we learned that Maria had slipped away in the small hours of the morning.   As our country memorialized our servicemen and servicewomen, Maria’s beloved family and the so many friends who loved her began to mourn her loss and to honor her memory.  In the days since, many beautiful, poignant words have been written about Maria, including her heartfelt and heartbreaking obituary.  And I’m humbly adding my voice as well to honor the beautiful soul who was and is  Maria Wetzel.

Everyone who knew her will tell you: there was something about Maria that stayed with you from the moment you met her.  I was no exception and can so clearly remember the first time I met her, now more than 6 years ago.  On that day, I had arrived in Denver, Colorado to attend my very first meeting as a breast cancer advocate.  I had just taken my first flight alone to a strange city, where I didn’t know a soul.  I was not only uncomfortable around new people–I was painfully shy.  And to make matters even more challenging, I’d just completed my chemo a few months before, still felt completely exhausted and weak, and was a bit self-conscious about my short hair with the obvious “chemo curl.”   In short, I was a nervous wreck.  But I had been absolutely determined to do what I could to try to shove my shyness aside, to “man up,” and to attend this workshop because it was something about which  I was so passionate.

Just a few weeks before, I’d been delighted to learn that I’d been accepted to attend the National Breast Cancer Coalition (NBCC)’s Project LEAD(r), which was an intensive scientific training course for advocates–for those who were dedicated to learning about the science of breast cancer, genetics and epigenetics, epidemiology, statistics, and trial design and how to robustly evaluate the evidence.  Not for the faint of heart, Project LEAD was and is an extremely competitive, 5-day training workshop led by faculty from the NIH, the FDA, academia, as well as clinicians.  During my treatment, I had learned about the NBCC, its laser-beam focus on the evidence, and its training programs, and this organization immediately resonated with me.  I promised myself that as soon as I finished my active treatment for breast cancer, I would join the NBCC and apply for Project LEAD.  And when I learned that I’d been accepted, I was beyond thrilled–and reassured myself that traveling on my own for the first time and spending several days with people I’d never met would be GOOD for me and that I’d just have to get control over my shyness. This was simply too important an opportunity to let slip away, and if I did, I’d never forgive myself.

So on that first day, when I walked into the conference in Denver, and I was confronted with a very large room filled to the brim with strangers, I was so nervous that my hands were shaking.   I selected one of the few remaining chairs, quietly looked around, and tried to get comfortable without drawing any attention to myself.   The introductions of the faculty and the mentors soon began–and I remember my immediate intimidation by these obviously brilliant people. As I listened to one after another of the mentors begin by saying how many years ago they’d been diagnosed with breast cancer and then speaking so passionately about their experiences as advocates–on scientific grant review panels, on FDA advisory committees, testifying before Congress, and so on–I was frankly overwhelmed by the profound accomplishments of these intelligent women who had been advocates for 10, 15, 20 years.  And I couldn’t still that little voice in my head that kept asking myself, How on earth am I going to get through this course? How could I ever hope to become as involved as these women and to even have one iota of the impact they’ve made for so many?

Maria was one of these remarkable women.  As she began to speak, the first thing that I noticed was her amazing long hair and the way she wore it straight down past her shoulders.  This may seem like such a frivolous thing to capture my attention, but I know that most of you who have lost your hair to chemo will be able to understand.   I of the new, short chemo curl, the one who had always had long hair since I was a kid, the one who was thinking that maybe, just maybe, I’d have one more chance to grow it long in my 40s before looking completely ridiculous–thought that Maria, in her 60s, looked absolutely wonderful and just so awesomely cool!   But of course, much more importantly, when Maria introduced herself to our Project LEAD class and began to speak, something suddenly clicked  into place for me.  Her voice was so quietly powerful, her explanations of the most complex scientific issues so eloquently clear, her questions and insights so helpful in getting to the heart of every issue, that I immediately began to feel reassured.  My nervousness began to dissipate, and as  I listened, I became more present and was slowly but surely drawn into the science that I love.   My shyness slipped away, and my passion for the information we were learning quickly left my initial intimidation in the dust.  And so began my Project LEAD experience.

In the days that followed, as I immersed myself in this invaluable information and new knowledge, I began to see so much in a completely new, much brighter light, and I left Denver as a true breast cancer research advocate.   And as I’ve said so many times in the years since, where I’d once entered a room full of strangers, I left having made some of the richest, most treasured friendships of my life with my Project LEAD classmates and with many of the mentors, including Maria.

Taken during NBCC's Project LEAD, August 2008, a year and a half following breast cancer diagnosis

Taken during NBCC’s Project LEAD, August 2008, a year and a half following breast cancer diagnosis

In the next months, many of us who were new advocates began to spread our wings, starting to pursue becoming involved as cancer research grant reviewers and regularly attending cancer research symposia to stay as current as possible on the data.  It was during that time when, about nine months or so after Project LEAD, I walked into the Advocate Lounge while attending my first American Society of Clinical Oncology (ASCO) Annual Meeting and was delighted to see Maria.  She greeted me with a warm hug and, although  I was still very much a new research advocate, immediately asked for my thoughts on new research data presented that day on one of the major topics at the conference.   (Those of you who are breast cancer research advocates will remember the apparently contradictory data from different clinical studies concerning the effect of a particular enzyme’s [CYP2D6]’s metabolism on Tamoxifen’s efficacy.)   That conversation was one of the most intellectually stimulating discussions I’d ever had as an advocate, and it was the first of many similar conversations I’d have with Maria, other advocates, scientists, clinicians, and academics, both personally and in the context of grant reviews and advisory panel discussions.  Maria had once again served as my mentor, genuinely interested in and encouraging of my thoughts, guiding me and so many other new advocates in her always generous, quietly eloquent way.

Over the next few years, I saw Maria often, during breast cancer research symposia, NBCC annual meetings and, as I became more and more involved as an advocate, during Department of Defense Breast Cancer Research Program Programmatic Review, Think Tanks, and other breast cancer research panel discussions.  And one evening, when having a conversation with Maria during the San Antonio Annual Breast Cancer Symposium, I remember becoming very worried.  Maria seemed short of breath, and she explained that she had been struggling with what she suspected was pleural effusion (a collection of fluid in the space between the linings [pleura] of the lungs).  She said that she’d been seeing her doctor and would be again shortly after returning home from the conference.  My heart dropped, and I did everything in my power to keep myself from doing what so many of us as survivors and advocates can’t help but do: worry about the worst possible scenario.

And when I next saw Maria a few months later … the world stopped.  I had just arrived in DC for the NBCC’s annual conference and was walking through the exhibit area when I heard someone calling my name.  When I turned around, I saw a woman walking toward me with a warm, kind smile on her face.   It appeared that she had just recently lost her hair to chemo, and as I got closer, I wasn’t sure that I recognized the person I was seeing, though her voice sounded so familiar to me.  And suddenly, I recognized her beautiful smile, her warm expression, my dear friend, Maria—whom I realized must have been diagnosed with metastatic breast cancer.  I’ll never forgive myself for this, but I immediately burst into tears.  I hadn’t heard of her diagnosis, and the reality of it blindsided me.  I’d made the terrible error of assuming that no news was good news, rather than the worst possible news.  Maria wrapped her arms around me, patted me gently on the back, and said over and over again, “I’m so sorry, Deb. I’m so sorry that you found out this way.  I’m so sorry.”  How could this be, that Maria was comforting me?  But that is who Maria was and will always be.

So many years following her original estrogen-receptor-positive breast cancer diagnosis in 1996, Maria’s breast cancer had returned, metastasizing to her lungs and to her liver.  And as she worked with her healthcare team to proceed with different treatments, Maria continued pushing forward with her research advocacy, with her writing to explain and analyze new research findings for other advocates, with her tough questions that always got to the heart of the issue, and with her mentorship.  As time moved forward and as Maria and her healthcare team tried additional treatments to slow the progression of her cancer, we all prayed that Maria would reach a point where she heard the words “stable disease” and “no further progression.”  But in mid-March of this year, I received a heartfelt message from another advocate friend and mentor, who shared with me that Maria had now been diagnosed with brain metastases and progression of her liver mets.  She was just completing whole brain irradiation, seemed to be doing amazingly well with her treatments, and was in good spirits.  But we also all knew that this wasn’t good.   And our prayers continued in earnest.

My friend told me that Maria was now having speech difficulties and therefore found it easier to correspond in writing rather than by phone.  So I sent Maria a message, telling her how dear she was to me.  I told her I was holding her close in my thoughts and in my prayers every day … that one of the biggest gifts my advocacy has given me is bringing remarkable people such as her into my life … that she was quite simply one of the most amazing advocates and one of the kindest people I’ve ever met … that I felt so blessed to have her friendship … that I missed her.

Maria wrote back the next morning and thanked me for my words and my prayers.  As my friend had said, she seemed to be in good spirits, and she reassured me that she was doing well.  Maria told me about her new medication regimen and, true to form, she minimized its difficulty, saying that it “so far is easy.”  And unbelievably, she once again gave me two wonderful gifts.  A few months earlier, knowing that I work with a neurology practice, she had asked for information that she might be able to pass on to someone close to her whom had recently been diagnosed with a chronic, progressive neurologic disease and was having understandable difficulties adjusting to the many changes and challenges associated with the disease.  She had been so worried about this, and in this message thanked me for this information, stressing how helpful it was and her relief “that it should make their lives so much better.”   In the midst of everything Maria was going through, she was as always advocating for her loved ones.  And in her note, Maria left me with a message that I’ll hold to my heart for the rest of my life:  she told me that I was “without a doubt, one great advocate and if I had any influence on that, I am happy.”  She had a profound influence on every one of us whom were so blessed to have her in our lives.  Maria leaves the family she loved so deeply, her so many dear friends, and a legacy of advocates across the country who are keeping her memory, her strength, her loving spirit, her hopes, and her mission in our hearts.

I leave you with Maria’s own words and ask you to keep her and all those who loved her in your prayers.  Rest in peace, sweet Maria.

Maria Wetzel, DoD Breast Cancer Research Program's "Era of Hope" conference

Maria Wetzel, DoD Breast Cancer Research Program’s “Era of Hope” conference

Vital Options, "Living with Metastatic Breast  Cancer"

Vital Options, “Living with Metastatic Breast Cancer”