Ode to Jody

 

Jody1

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

 

Advertisements

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.