15 Random Facts

I’m an avid reader of “Nancy’s Point,” and she just posted a wonderful idea, challenging all of us who are also bloggers to post 15 random facts about ourselves.  I truly enjoyed learning more about Nancy through the facts that she posted, and as she said so well, “We are all about so much more than cancer.”  So I’m happily taking Nancy up on the challenge, and I hope that you, my wonderful readers, will also share a few things about yourselves here by leaving a comment on my blog.  So here it goes (with apologies if you know some of the below from previous blogs):

  1. I have one younger sister, who is brilliant, hilarious, extremely talented artistically, beautiful, opinionated, loving, and unique in all the right ways. I’m blessed that she is my sister, and she is the best friend that anyone could ever have.  My mother and father were married very young and had my sister and I when they were in their early 20s (I can’t even imagine!).  They both still look so young for their ages (they’re now in their early 70s).  They’ll say that I can’t be objective, but my mother is gorgeous, and, as the kids today would say, my father is still a “hottie”!  I’m incredibly close to both of my parents, and I thank God that I’m their daughter every day.
  2. I’m impatient: I know that “patience is a virtue,” but damn, this is a tough one for me to achieve. I hate waiting in lines, despise going through airport security, drive much too fast (though I’ve improved a bit there), and resent having to go through endless “phone trees” when you have to keep shouting “YES” or “NO” to the automated voice’s endless questions, never get a real person, and are then disconnected!!! (Yes, this did happen to me just recently. ;)
  3. My husband and I just celebrated our 22nd wedding anniversary yesterday on July 10th!  And my parents just celebrated their 52nd (holy cow!)
  4. I absolutely adore all dogs and puppies, but am particularly in love with springer spaniels (sorry, I know that most of you are well aware of this). I believe completely that puppies are the cutest beings on the planet, and I’m much quicker to open my arms to a puppy than a baby. (I know some of you think that’s just terrible, but it’s true!)  I also definitely would not consider myself a cat person, although I do love cats that are particularly affectionate—in other words, more like dogs!
Deb and Little Miss Molly

Deb and Little Miss Molly

5. Each of the men (boys?) I seriously dated in late high school and college were of Irish descent,as is Marty, my husband (obviously, based on my last name, right?). I’m of Russian, Romanian, and Austrian descent.  Maybe I was Irish in a past life?

6. I’m a voracious reader and always have at least one book going. I primarily read fiction, but lately, I’ve also been enjoying non-fiction on some fascinating topics.  I love the latter, because I always feel like I’m learning something—but tend to have a novel going at the same time to make sure that I’m relaxing and not using “too much” of my brain. ;)  I also love almost nothing more than writing and the feeling I often get of slipping into the “zone,” where I’m so deeply absorbed in what I’m writing that I lose track of time, space, and everything around me.

7. If I could have pasta or lasagna for dinner every night, I would be a happy girl.  Maybe I was Italian in a past life?

8. My favorite bands have been and will always be Pink Floyd, Steeley Dan, the Grateful Dead, and Fleetwood Mac (boy, am I dating myself or what?). But I also enjoy Norah Jones, Adele, Cracker, Old Crow Medicine Show, ‘Keb ‘Mo, classical music–I guess I could go on and on.

9. I’m Jewish, and my husband is Catholic. Although he is much more devout than I am, being Jewish is an enormously important part of who I am.

10. When my husband and I were married, we agreed that we did not want to have children. We felt that way for years … but right around the time I turned 40, we started talking about perhaps changing our minds. I was almost there, thinking ‘Yes, I think that I really do want to have a child,’ and I began literally seeing our little girl in my dreams at night.  And it was then that I learned I could not have children.  It turned out that the chemotherapy I’d had in my early 20s took this choice away from us.  I was on the pill during my treatment and did not go off of it until my late 30s due to my heart issues.  Apparently, being on the pill for all those years had masked signs of perimenopause, which became clear months after my coming off the pill.  I know that it may seem strange, since for so long, we had decided not to have children, but I’m angry about this: after all, this was our choice to make, and when we finally got to the point where we were ready to change our decision, this option was taken away from us.  I have not seen our daughter in my dreams recently, and I miss her.  No doubt, that also may seem strange.  But I’m hoping that because I finally wrote about this, I’ll see her again in a dream very soon.

11. I absolutely love being a cancer research advocate. I hate the reasons responsible for my becoming one. But I have learned so much, engaged in such important work as a result, and have met and worked with so many remarkably special, talented, loving people, where our paths would never have joined had I not been personally affected by cancer.

12. I have zero tolerance for folks who seem to relish bringing problems to your attention, but never want to hear about working together to find solutions.

13. I was painfully shy throughout my childhood and didn’t really break out of this until I was in my early 40s when I became an advocate.

14. I get very upset with people who seem to be oblivious to those around them and have no sense of common courtesy. Have you ever gotten behind that person at the grocery store who is taking up the entire aisle and then seems peeved when you say, “Excuse me” as you’re trying to get by? How about the so many folks who absolutely refuse to switch to the left lane when you’re coming down the entry ramp and trying to merge into the right lane of the highway?  Or what about when there is a traffic jam, everyone needs to merge from two lanes into one, and that one A-H drives down the breakdown line until the very last second and then jumps into the lane, holding up everyone—and inevitably encourages other losers to immediately follow his example?  Hmm: I see that many of these are traffic related; I wonder what that says about me? ;)

15. Though I’ve had to deal with serious health issues beginning in my early 20s, and though every adult decision I’ve ever made has had to take health insurance and my medical history into account, I love my life and feel blessed for every moment that I’m here.

Wow: writing this was quite a cathartic experience!  Nancy, thank you so much for your inspirational challenge!  And my wonderful readers, please join in!  I’d love if you would share some random facts about yourselves here, so that I can also get to know you better–and learn more about your likes, dislikes, what you find hilarious, your pet peeves, what matters most to you, and what brings you the most joy.

Sharing My Perspective as a Cancer Survivor with Cardiac Late Effects – in the June Issue of the “Evidence-Based Oncology” Journal

A few months ago, I received a message on LinkedIn from the Managing Editor of the journal Evidence-Based Oncology.  She explained that she had read my blog and was writing to ask whether I would consider contributing to their upcoming June issue.  The issue would be dedicated to the growing field of Cardio-Oncology, and she was requesting my contribution to provide a patient’s and advocate’s perspective as one who has personally experienced cardiotoxicity secondary to cancer treatment.  (Evidence-Based Oncology is a publication of The American Journal of Managed Care, a peer-reviewed journal dedicated to disseminating clinical information to managed care physicians, clinical decision makers, and other healthcare professionals in its aim to stimulate scientific communication in the continually evolving field of managed care. It serves as a platform for research, news updates, and opinions in the world of oncology that may impact healthcare access as well as coverage decisions.)

I greatly welcomed this wonderful opportunity to contribute to such a well-respected journal, particularly concerning the serious risk of developing late effects due to cancer treatment, a critical area that is at the heart of so many of my advocacy efforts. You can see my article on the American Journal of Managed Care (AMJC) website, and it was also posted today, June 1st, with the newly released June issue of Evidence-Based Oncology. I would be honored if, as a follower and/or reader of my Musings of a Cancer Research Advocate blog, you would take a moment to read my article on the Evidence-Based Oncology website and share it with your friends and colleagues, such as through Facebook, Twitter, or LinkedIn, to help increase awareness among patients themselves, their primary care physicians (so many of whom still know far too little about late effects of cancer treatment), and other healthcare providers concerning the very real risk of developing collateral damage from cancer treatment many years, often decades, following cancer treatment.  I hope that in some small way (or, even better, in a big way) that my and the other articles in this Cardio-Oncology series will truly make a difference in increasing understanding concerning this critical area for cancer patients and in reducing misdiagnoses / late diagnoses of and increased mortality due to these serious conditions.

Here We Go Again: Breast Cancer Screening Story Steeped in Politics, Rather than the Evidence

Once again, we’re seeing the confusion and controversy surrounding breast cancer screening being used as a political tool by those who know little–or care little–about the evidence.  Earlier this week, an NPR Morning Edition report ran with the misleading headline, “Congress May Be Forced To Intervene Again On Mammogram Recommendations.”  And the headline was only the beginning of an imbalanced story filled with misconceptions, gaps in context, and misunderstanding of the science.

The story, which was from a political reporter (and not a science or healthcare reporter), Juana Summers, discussed the most recent developments this year following the U. S. Preventive Services Task Force (USPSTF)’s 2009 recommendation that routine screening mammograms for average-risk women should begin at age 50, rather than 40 years.  As outlined in the recommendations, for those ages 40 to 49, screening mammography has not been shown to decrease mortality due to breast cancer, yet the evidence does show that such screening is associated with a significantly higher number of false positives, with resulting unnecessary biopsies and worry.  In addition, what is often lost or not sufficiently stressed in media coverage is that these recommendations do not apply to women with increased risk for breast cancer (e.g., family history, known BRCA1 or BRCA2 mutation, chest radiation).  The Task Force’s recommendations were aimed at reducing the very real harms for women at average risk, including unnecessary further tests as described above, as well as preventing overdiagnosis and overtreatment–e.g., the detection of ductal carcinoma in situ (DCIS), sometimes called “stage 0,” which in most cases will never go on to become invasive, resulting in unnecessary aggressive treatment interventions.  However, due to no or poor reporting of the science behind these recommendations, the resulting public outcry, and political jockeying, legislation was passed by Congress overriding the Task Force’s recommendations.

mammogram controversy

As the USPSTF now moves ahead with an update of these guidelines–where a draft released earlier this week shows that the Task Force “essentially repeated its earlier recommendation”–Summers reported that another political firestorm appeared to be on the horizon.  And the online article’s headline, “Congress May Be Forced to Intervene Again …” certainly suggests that Congress has “no choice” but to step in again.

Summers’ story began with comments from Debbie Wasserman Schultz, Florida Congresswoman and Chair of the Democratic National Committee (DNC).  Though she was diagnosed with breast cancer herself, and although she describes herself as a breast cancer advocate, I would argue that Schultz has a tendency to focus on the emotional, the sensational, and the politically expedient, rather than the evidence when she discusses these issues.  Witness the following:

In Summers’ report, Schultz says, “Forty-one – I was – I had just had my first mammogram a few months before I found the lump.”  Summers states, “That is Debbie Wasserman Schultz … Diagnosed at 41 years old, she says that if the recommendation had been in place, she may not have gotten a mammogram and her own cancer wouldn’t have been caught early. What’s more, she says the task force is essentially handing women a death sentence.”  Schultz then says, “We know that there are women that [sic] will die if this recommendation goes through.”

U.S. Representative Schultz speaks during the Reuters Washington Summit in Washington

But didn’t Schultz say that she had had her first mammogram a few months before she found a lump herself?  In looking into this further: in a 2013 Glamour Magazine interview with Schultz, she noted: “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.  Though one anecdote, her own story does not support the case she is trying to make so vociferously.

But I was pleased to see that a subsequent article in NPR Ombudsman by Elizabeth Jensen, entitled “Political Story on Breast Cancer Screenings was Missing Some Science” (though the word “some” is perhaps a bit generous).  Jensen explains that Summers’ report drew strong criticism, including from physicians who had serious concerns about the lack of context and no explanation of the evidence behind the Task Force’s recommendations.  They felt that a more nuanced discussion of this complex issue is required, where the reasoning behind the recommendations is explained and a careful balance is suggested in weighing potential benefits against possible harms in the context of individual patient needs.

And back to the politics. In writing about the original NPR piece, Gary Schwitzer of HealthNewsReview.org noted that several politicians were quoted, with all showing their opposition to the Task Force recommendations.  In contrast, however, he stressed that “the 4-minute piece had no interview with anyone with the Task Force. Not a quote.  Not a word. That’s imbalance.  You can talk about bipartisan opposition all you want.  But on a scientific controversy, citing bipartisan opposition doesn’t equate to balanced or sound journalism.”

Though the angle of the story was chosen to be a political one, there is no getting beyond the fact that it’s about an important, complex medical issue.  Many of us would submit that much of politics is about obfuscation, and that is frustrating to say the least–but that can become downright dangerous when scientific questions are pulled into the mix and being on the “right side” of the issue becomes more important to many than the evidence.  NPR did a disservice to its listeners and readers by not providing a clear explanation of the Task Force’s recommendations, not interviewing anyone on the Task Force, interviewing solely politicians who voiced disagreement with the recommendations and were uninformed about the science and/or had other concerns, and perpetuating the controversy, confusion, and misunderstanding about this important issue.

As Schwitzer so rightfully concluded, “If we once again allow news coverage of this issue to be dominated by politics–and by coverage that delivers a superficial thumbnail sketch of a scientific controversy –we will have done more harm to women and to all news consumers than anything we can do with mammograms or without them.”

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

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

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

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

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

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

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

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

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

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

Should

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

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

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

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

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

church-lady

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

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

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

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

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

~Hindu Prince Gautama Siddharta, the founder of Buddhism

Lonely hearts

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

 

A Devastating Anniversary – Two Years After Newtown’s Tragedy

Two years ago today, it was an ordinary morning in Newtown, Connecticut.  As I was driving down Main Street, headed to work, I admired the grand old homes, decorated for the holidays, and the Stars and Stripes rippling from the town’s flagpole in the cold air.  At that very moment, 5 minutes away, a disturbed 20 year old was systematically taking the lives of 26 beautiful souls,  forever dividing time for so many of us.

I fell in love with Newtown the first time my husband-to-be drove me down the most beautiful Main Street I’d ever seen, where a massive flagpole, first erected in 1876, proudly stands directly in the middle of the street as an ongoing tribute to the 43 Newtownians who were determined to show the town’s patriotism to celebrate the United States’ 100th anniversary.

During that first December drive down Main Street, Newtown was the home of Lexington Gardens, the folksy “Newtown Bee,” Pasta Fresca—the best Italian restaurant that ever was—and such friendliness and warmth that many residents proudly displayed “Nicer in Newtown” bumper stickers on their cars.

It’s no longer nicer in Newtown–and now we’re also infamous.

As an advocate, I’ve been traveling quite a bit over the last several years, and whenever someone asked me where I was from—even if they were also from Connecticut—their response to my answer was always, “Newtown?  Never heard of it; now where is that?” And I can’t tell you how many pieces of mail we’ve received that were addressed to “Newton.”  Now, everyone knows Newtown.  And everyone knows Sandy Hook, a village that is an intimate part of our town.

On December 14, 2012, shortly after I arrived at work, I heard a commotion in the office next to mine.  When I opened my office door and stepped into the hallway, our entire Billing staff was talking at once, with expressions of horror in their faces.  “Deb, there’s been a shooting in Newtown at one of the schools.”

With that one sentence, our lives changed instantly.  I raced to the phone to call my husband, Marty: our friends across the street from us have 2 sons in Newtown schools, and their mom works in one of the schools as well.  Thank the Lord, their dad had already called Marty to let us know that they were all okay.

The rest of the day was a blur.  We all had our eyes glued to our computers, following the news and worrying about the people we know and love in Newtown.  At one point, one of our doctors, who also lives in Newtown, was interviewed from the Sandy Hook Firehouse, where he was preparing to triage anyone who had been harmed in nearby Sandy Hook Elementary School.  All of our MDs who weren’t working at the practice that day were called into Danbury Hospital to assist the wounded.  They later said that the most devastating moment was when they realized that no more survivors were coming: just 3 people, 2 children and one adult, were brought to the Hospital, and the adult, an employee of Sandy Hook Elementary, was the only one to survive her injuries.

When I drove home that evening, just the thought of driving down my beautiful Main Street made me feel ill, anxious, nauseated.  And I was right: it was absolutely devastating.  There were police cars, news vans, and cameras everywhere, and Newtown looked like it had turned into a war zone—and it had.

Over night, memorials began to appear in town almost everywhere you looked.  Two minutes from our home, someone had posted a makeshift sign on a telephone pole that simply said “Pray.”   Another minute away, people had begun to bring roses, teddy bears, toys, bows, notes, candles, and prayers to a memorial right next to our police station, a memorial that grew larger and larger with every day that passed.  Surrounding towns also began to place signs with messages for the people of Newtown: “We are praying for you, Newtown,” “We Choose Love,” and “We are Newtown.”  And we in Newtown and Sandy Hook mourned deeply for all of those who lost their beloved family members and for the loss of what our town had been.

Newtown, 2012, Pray

 

Newtown 2012, 2

In the days following the tragedy, Newtownians made small acts of kindness the rule rather than the exception.   When stopping at a 4-way intersection close to my home, all 4 of us waved one another on, wanting to be generous to the other folks, until one driver reluctantly went through the intersection.  When walking in my daze through Newtown’s Library, I brought a greatly overdue book to the counter, and the librarian said, “We’re not charging Newtownians any overdue fees for now.”  Yes, small acts of kindness: but these went far to thaw the freeze on our hearts.

Most of us who live in Newtown who were fortunate enough not to lose a loved one know families who were directly impacted.  And we very much grieved together as a town—and still do, 2 years later.  Many of us felt as if we were living in a fog, where nothing seemed real—and had one or more moments when the fog broke and we completely broke down from the weight of the sorrow.  My moment came when I was driving to work one day about a week after the tragedy.  I’d avoided driving through the center of Newtown as much as possible, because at first, it broke my heart and later it angered me that the news vans, the cameras, and the reporters were still there and increasing in number daily.  But I had a present that I needed to mail to my sister for Hanukkah, so I had to stop by the post office across town.  As I was driving down Main Street toward the flagpole in the center of Newtown, I heard a commotion behind me and realized it was a motorcade.  As I pulled over, several police officers drove past on motorcycles … and then I saw the hearse.  And that’s when I completely, totally, irrevocably “lost it.”  There is only one other time when I’d sobbed like this: that day was on 9/11, when we saw the second plane crash into the World Trade Center, when the first and then the second tower came down, when we saw people at the windows of the towers gasping for air and preparing to escape the fire by jumping to their deaths.  As I was trying to wipe my tears away and pulled back into the road behind the hearse and the motorcade, I heard another sound and realized that it was me, wailing.   As I followed the hearse, I saw that it was pulling into the driveway of the church directly across from the flagpole.  I noticed that there was a large, beautiful picture on the church’s lawn—and saw that it was a picture of Benjamin Wheeler, one of the little boys who had been killed.  He was 6 years old, 6 years old.

I saw all the mourners stepping out of the church onto the lawn, and I just couldn’t take it.  I somehow managed to keep driving … only to pass another church, where another funeral was taking place for another beautiful life that had been taken by the shooter.  The lawn of this church was absolutely crawling with reporters, camera crews, and news vans from CNN, Fox News, ABC, CBS, MSNBC, and on and on and on.  They were all planted directly in front of a sign that the church had posted, saying “No media past here.”   I finally managed to pull into the post office’s driveway.  I shut off the engine.  I called my husband, absolutely distraught.  I could barely get the words out, but that didn’t matter.  He spoke with me for about 20 minutes, calmly, soothingly, sharing our grief.  I thought I’d finally gotten myself together, so said good-bye to my husband, grabbed the package, and walked into the post office.  I have no recollection of writing out the mailing label for my sister’s present.  And when I walked to the counter and put the package on the scale, from the way the gentleman behind the counter looked at me, I realized then that I was still crying, but silently now, and the tears just kept rolling down my face.  He then gently put his hand on mine, patted it a few times, and simply said, “I know.  I know.”  But that’s the thing:  I just don’t know.  I don’t know how the families who lost their loved ones this way are going on.  My heart broke for them, as did everyone’s here in Newtown, neighboring towns, everywhere.

Newtown 2012, 3

The first time I traveled following the shooting was in February or March 2013.  I was meeting several advocates who were members of a panel on which I was also serving.   As we got to know one another, we exchanged business cards, but I found that I did so reluctantly–because I knew what was going to happen.  Two of the women with whom I’d exchanged cards were sitting directly across from me on the other side of a large table.  It took about a minute.  They then, simultaneously, looked up, held my card out to the other, pointed to the name of my town, and mouthed, “Oh my God: she’s from Newtown!”  Later in the meeting, they both came up to me separately, saying how sorry they were and asking how all of us in Newtown were coping with the horror that happened in our sweet town.  And this is what I told them:

There is absolutely no way to put the experience, this tragedy into words.  It is simply unspeakable.  But with the horror had also come such kindness, giving, and love.  As I mentioned before, following the tragedy, I saw countless random acts of kindness here in Newtown.  For many months, there were green and white ribbons on almost every telephone pole in town (representing Sandy Hook Elementary School’s colors), and beautiful little painted stars also appeared on the poles with words like “courage,” “love,” and “friendship” to honor those we lost.  Comfort dogs were brought to town right after the tragedy occurred, and they continued to visit Newtown’s schools for months.  Several charities have been established to help the families who lost loved ones; to establish scholarships for children who want to become teachers, celebrating the lives of the brave women who were lost that day; and to help some of the first responders who haven’t been the same since they saw the unseeable.

One of these charities is called Ben’s Lighthouse, which “was created in honor of Ben Wheeler and his Sandy Hook classmates to promote the long-term health of the children and families in the region while nurturing an environment of non-violence and caring.”  As Christopher Murray, psychotherapist and friend of the Wheelers wrote in an article entitled “The last time I saw Ben Wheeler,” “Benny loved lighthouses… Since he’s been gone, lighthouses have become a symbol and a metaphor for him and his martyrdom. His spirit and his memory shine a strong and penetrating beam of light through clear nights and stormy ones to confer upon us awareness, and to bring us safely home.”

Please join me in praying for the families of all those so brutally lost to this unthinkable tragedy:

– Charlotte Bacon, 2/22/06, female
– Daniel Barden, 9/25/05, male
– Rachel Davino, 7/17/83, female.
– Olivia Engel, 7/18/06, female
– Josephine Gay, 12/11/05, female
– Ana M. Marquez-Greene, 04/04/06, female
– Dylan Hockley, 3/8/06, male
– Dawn Hochsprung, 06/28/65, female
– Madeleine F. Hsu, 7/10/06, female
– Catherine V. Hubbard, 6/08/06, female
– Chase Kowalski, 10/31/05, male
– Jesse Lewis, 6/30/06, male
– James Mattioli , 3/22/06, male
– Grace McDonnell, 12/04/05, female
– Anne Marie Murphy, 07/25/60, female
– Emilie Parker, 5/12/06, female
– Jack Pinto, 5/06/06, male
– Noah Pozner, 11/20/06, male
– Caroline Previdi, 9/07/06, female
– Jessica Rekos, 5/10/06, female
– Avielle Richman, 10/17/06, female
– Lauren Rousseau, 6/1982, female
– Mary Sherlach, 2/11/56, female
– Victoria Soto, 11/04/85, female
– Benjamin Wheeler, 9/12/06, male
– Allison N. Wyatt, 7/03/06, female

Newtown, December 2012

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.