Doth the Lady Protest Too Much? The Bruce and Caitlyn “Jenner-ization” of the Nation

This blog posting has a bit of a different focus than my blogs typically do.  But I have a rule: if something causes me to throw back my head in frustration or to start talking to my computer screen or TV, that means I need to write about it—if only to work out my irritation, to reach some type of catharsis if I’m fortunate, or to come to a conclusion that may even have a pearl of wisdom buried within.  So I sincerely apologize if any of my wonderful readers takes offense to anything I’m about to say—but please do stick with me to the end if you can.

So here it goes.  If I see one more article about Bruce/Caitlyn Jenner’s “rocking a gorgeous white Versace gown,” taking “a walk on the wild side when she stepped out” in a leopard-patterned wrap dress in New York City, or “conquering her fear of swim suits,” I’m going to start screaming, and I may not stop.  But as you’ll see shortly, my rant here is not so much about Caitlyn, but rather about what I’m calling today’s “Jenner-ization” of America.

At the age of 12, with the rest of the country, I watched in admiration when Jenner set the world record in the decathlon and received the gold medal during the 1976 Montreal Summer Olympics.  And his win was certainly exciting in the moment.  But I didn’t quite understand why so many seemed to worship him so–and for so long.  After all, having received his gold, he retired immediately after taking his victory lap around Olympic stadium.  Even he has joked that “Nobody has milked one performance better than me—and I’m damned proud of it.”  And years later, after moving to Newtown, CT, I learned some not-so-admirable facts about Jenner, making it even more difficult to consider myself a fan of the former athlete.

A bit of background first, and then on to why Jenner has not been Newtown’s favorite son for some time now.  The fact is that Jenner lived right here in Newtown, and this is where he spent his last 2 years of high school.  In addition to competing in track at Newtown High, Jenner also played on the football and basketball teams, and he was voted Most Valuable Player of Newtown’s track squad.  He attended his senior prom with the young lady who became the wife of Newtown’s former first selectman.  And a few months after winning the gold medal in Montreal, Jenner returned to Newtown to attend a ceremony at Newtown High, during which they christened “Bruce Jenner Stadium.”  Just a few months later, tragedy struck the Jenner family:  his younger brother, who was just 18 years old, was killed in a car accident in Canton, CT while driving Jenner’s Porsche, which had been a gift to celebrate the Olympian’s success.  Though some speculate that his brother’s tragic death may be at least part of the reason that Jenner appears to have kept his distance from Newtown after that time, his name remained on the Newtown High School stadium for nearly 25 years.

And here’s where many Newtownians’ opinions of Jenner changed.  Former Newtown High School principal, William Manfredonia, told the Danbury New-Times that in 1997, school officials repeatedly tried to contact Jenner–whom at that time was living a charmed life as an actor, announcer, and motivational speaker–asking “for both financial and moral support” for a $400,000 renovation to the stadium.  Manfredonia said that “I wrote to [Jenner] twice to see if he could help, and I even called, but I never even got the courtesy of a reply letter.”  Michael Kelley, who was then the president of Newtown High School’s Blue and Gold Booster Club, also made repeated calls to Jenner while working with the club to help raise money for the new stadium.  “I never spoke to him personally, but I called his office and home numerous times,” Kelley told The News-Times. “His wife told me he was involved in other commitments and was not able to help us.”

At that time, I was a relatively new resident of Newtown, and my husband had already been living here for many years.  We were both enamored and protective of our sweet home town.  Needless to say, upon learning that Jenner did not even have the common courtesy to pick up the phone to return a call, let alone contribute to the stadium that bore his name, we were outraged at first and then simply disgusted.  Apparently, he simply was not interested in contributing to the warm, sleepy town where he honed his athletic skills.  Nor did he appear to have any inclination to help with a renovation to the “Bruce Jenner Stadium,” so that new generations of young men and women could develop their own athletic skills and perhaps go on to reach some semblance of the fame, fortune, and success that he had achieved.  Of course, it was completely within his right to choose to spend and not to spend his fortune in any manner that he wished.  But the result was that many of us who love Newtown lost a great deal of respect for him, the man who was Bruce Jenner at that time.

So that was that.  In October of 2001, the school board unanimously approved a name change for the stadium, calling it the “Blue and Gold Sports Stadium,” and they also renamed the athletic field behind Newtown High School as the “Harold S. DeGroat and Ann Anderson Sports Complex.”  Speaking to The News-Times, long-time Newtown resident Joan Crick said that “the stadium never should have been named after Jenner; it should have been given the name of Harry DeGroat, a long-time high school sports coach and physical education teacher, who died nearly 40 years ago. ‘He did so much for the town and is remembered by so many for his work and achievements,’” she stressed.  Kelley somewhat agreed: “I think we made the right decision in choosing his [Jenner’s] name for the stadium at the time, but over the years there hasn’t been a connection between Mr. Jenner and Newtown.”  The high school stadium, which is still known as the Blue and Gold Sports Stadium, contains a plaque listing the names of the many people who contributed toward the stadium’s improvements.  One former Newtown resident’s name is notably lacking.

Fast-forward to the very different world in which we live today.  So now you know why I have not considered myself a fan of Jenner for some time.  I just happen to think that not deigning to take a phone call from an official of your former home town—a town that honored you and celebrated your accomplishment by putting your very name on their stadium–was simply a rotten, thoughtless thing to do.  But as hinted earlier, that’s not why I’m writing this blog: what prompted me to do so is my concern for what’s been happening to our beloved country.

Before you start shaking your head, thinking that I’m a transgender-phobe (is that a word yet?), that is absolutely not the case.  If Bruce was miserable being Bruce and is truly happy now being Cait, I’m genuinely happy for her.  There is far too much suffering and pain in this world, and it’s always a wonderful thing when people are able to make changes that result in their leading much happier lives.  Also, I truly hope that by sharing her story, Cait is able to provide comfort and hope for those who are currently struggling with gender identity–and perhaps help to prevent some of the terrible experiences that impact so many transgender youth, such as family rejection, harassment, discrimination, violence, and other severe stressors that may contribute to the high suicide attempt rate among transgender people.

But sadly, with that said, it certainly appears to some of us that this is just as much—or perhaps much more–about Bruce doing what he wanted to do and making a pretty penny than it is about a strong sense of altruism and genuine concern for others.  Rather, for many, this seems more like another episode (literally) in our country’s current sensationalized reality TV show culture.

When Diane Sawyer asked Jenner (who was not yet going by Caitlyn) about whether this was a publicity stunt for the “Keeping Up with the Kardashians” show as many in the public were convinced, he rolled his eyes, laughed,  and sarcastically said the following:

Jenner: “Ohhh noooo, we would never do that, Diane! Are you telling me that I’m going to go through a complete gender change, okay, and go through everything you need to do [for] that for the show?  Sorry, Diane, it ain’t happening, okay? Yeah, we’re doing this for publicity … yeah, right.  Oh my God, Diane, do you have any idea what I’ve been going through all my life, and they’re gonna say that I’m doing this as publicity for a show?  Oh my God.  There are lots of shows out there.”

jenner

Sawyer: “Yes, but there’s a shameless selling of everything these days.”

Jenner (now leaning forward and pointing at Sawyer): “And I get that, but what I’m doing is going to do some good.  We’re going to change the world.  I really firmly believe that we’re going to make a difference in the world with what we’re doing.  And if the whole Kardashian show and reality television gave me that foothold into that world—to be able to go out there and really do something good, I’m all for it. I got no problem with that.  Understand?”

“Understand?” My goodness!  It would be difficult not to regard Jenner’s tone and body language as sarcastic, didactic, and just downright rude.  And it was interesting to me that he kept using the word “we.” Wouldn’t one who was genuine about what he was saying use the word “I”?  Doesn’t his use of the universal “we” seem a bit contrived and suggest that he was referring not so much to his family members, but rather to the “cast members” of the Kardashian television show?  Perhaps the lady doth protest too much?

Yes, in my humble opinion, she “doth.”  Over the last several weeks, every single time I’ve gone online to conduct a search on Yahoo, there were not one, not two, but several stories about Caitlyn.  It was the day when I saw six, yes, SIX of these stories listed one after the other that I’d had enough.  And what did these “news” stories cover?  Let’s see: where Jenner went to lunch; how “stunning!” she looked while wearing “a tight black dress”; how stylists everywhere are finding “her classic and timeless hair and makeup flawless”; and the fact that she was excited about @Caitlyn_Jenner stealing the “Twitter crown” from @BarackObama by receiving 1 million followers the most quickly (where Caitlyn’s reaction was a squealing “Let’s go for the record! I love records!”).  Good grief.  Doesn’t this non-stop, frivolous, “glam” coverage about hair, nails, make-up, and social media highly suggest that much of this is about furthering celebrity and piling up those pennies?  And how about the fact that Jenner called a “family meeting” to break the news about his transgender plans to Kim, Khloe, Kylie, and Kendall Kardashian–during which E! cameras were rolling to capture the moment for an upcoming episode of “Keeping Up with the Kardashians”? What was that you said about publicity?  “Ohhh noooo, we would never do that, Diane!”

But for many, perhaps worse yet was when the media, Hollywood, and many others started throwing around the word “Hero” to describe Jenner’s transgender transition.  The icing on the cake was this quote from Kanye West, the husband of Kim Kardashian, when speaking to Jenner about her transition: “I think this is one of the strongest things that have [sic] happened in our existence as human beings, that are [sic] so controlled by perception.  You couldn’t have been up against more.”  Besides being barely understandable, really?  In my humble opinion, it’s difficult to reconcile “hero” as an appropriate term here—and I’m certainly not the only one who feels this way.  Just one example is former Virginia Beach Navy SEAL, Kristin Beck, who has not minced words concerning the manner in which Jenner is revealing her transgender transition.  In an interview with NewsChannel 3, Northeast NC, posted on May 13 this year, Beck bluntly stated, “He’s no hero.  I’m seeing too much of that money-grubbing reality show crap.”  Two years after retiring from the Navy, Beck revealed her transgender transition in a 2013 interview with CNN’s Anderson Cooper.  Beck strongly feels that Jenner’s approach to spacing out bits and pieces of information is less than helpful to the LGBT community.  “He’s keeping everything secret and parsing out information to fish out another 17 million viewers to make another million bucks.  It’s shameful, and you’re not a hero if all you’re doing is trying to make money.  You can’t be an example if all you are is just that reality show machine.”  Beck has written a book on her transgender journey and created a documentary called “Lady Valor.”  She explained that “I took the road where I made a documentary, did everything real quick, and just said, ‘Hey, here it is; here’s the information if you want to know about it.’  And now I’m going to universities and speaking for free at colleges and universities all around the country.  I’m barely breaking even, but I’m trying to show people who we are as normal folks, as something you can look and say, ‘Okay, I can understand it.’”

Beck, who is running for Congress in Maryland, emphasized that “There are kids, transgender LGBT kids who are killing themselves every day because they have no hero to look up to.  They see no future.  They feel isolated, and this could have been a really good example of what you can do and could have saved some lives.  But instead, you’re going to make a few bucks.  Disappointing.”

And concerning Kanye West’s statement that Jenner “couldn’t have been up against more”?  It is terribly sad that Jenner was unhappy for so long.  But Jenner became a celebrity many moons ago, had more opportunities than most in this life, and was immediately  buoyed and supported by other celebrities when he revealed that he was now Caitlyn.  Just to name a few examples, singer Demi Lovato dedicated a song to “American Hero, Bruce Jenner.”  Celebrity after celebrity tweeted their support to Jenner after her Vanity Fair cover, Culture Club’s audience gave her a standing ovation, and she is now surrounded by dedicated hairstylists and assistants to ensure every hair is in place and every outfit is “stunning.”  So Jenner “couldn’t have been up against more?”  In all seriousness, isn’t it time to stop the sensationalizing, the rubber-necking, the lowest-common-denominator impact of reality shows on our true reality?  The popular media has played a disgraceful role in this, with the result being more and more people who are “famous for being famous”—the Kardashian sisters, Paris Hilton, Nicole Richie, and on and on it goes.  Instead, imagine what a better world this could be if the media paid much more attention to the TRUE heroes all around us–many of whom in reality “couldn’t have been up against more”?  For example, wouldn’t you like to learn more about the following remarkable people?

Unsung Heroes in Our Midst

  • Do you recognize the names Ali Viator Martin and Jena Legnon Meaux? I did not hear a single news story about them and only learned of their bravery due to my brother-in-law’s discussing what had happened to them.  The two teachers were recently watching a movie in Lafayette, Louisiana when a gunman opened fire in their crowded theater, killing two people and injuring nine others, including Martin and Meaux, who were both shot in the leg.  One of these brave teachers immediately threw herself on top of her friend when the shooting started to protect her from the ongoing gunfire.  The other managed to drag herself to a fire alarm and pulled it to alert everyone in the building of the danger.  The overwhelming majority of the news coverage focused on … (you guessed it) … the motivations of the killer, who shall remain nameless here, rather than on these two brave women who undoubtedly saved many lives.

beaux-and-martin

 

  • Have you heard the name Kimberly Koss? She is a biomedical scientist, mother, and grandmother who delayed her treatment for a particularly aggressive type of breast cancer (known as triple negative breast cancer) to donate her tumor cells for research.  Speaking to Yahoo! Health, Dr. Koss explained that “This will be tremendously helpful in figuring out what causes this type of cancer and how to treat it…Every day, that gives me hope.”  Her friend and colleague, Dr. Keith Jones, is heading the research team at Loyola University Chicago Stritch School of Medicine, where they are using Koss’s tumor cells in an effort to create an immortal cell line.  Crucial for cancer research, immortalized cell lines are a population of cells that would normally not proliferate indefinitely yet, due to mutation, are able to evade the normal loss of the ability to grow and divide and therefore can continually proliferate.  Such laboratory-grown human cells, which may be cultured in mice, are critical for testing theories about the underlying causes of and treatments for cancers for translation into clinical advances.  Koss’s cancer was highly invasive, with the cancer cells’ undergoing cell division rapidly, making them good candidates to successfully proliferate in cell cultures.  However, chemotherapy would have damaged the tumor cells, making them less likely to survive in cell culture.  For triple negative breast cancer, many basic questions remain, and though there are some triple negative cell lines available for research, these tend to be from patients who had received chemotherapy prior to removal of the tumor.  In addition, as Dr. Jones told Medscape Medical News, Koss’s cells contain mutations not seen in the other cell lines.  “This will allow us to confirm that the cell lines used for study reflect the actual tumor tissue the way it was in the body, before it was extracted.  This is an opportunity we did not have before.”

Due to Koss’s decision to donate her tumor cells to research, she started to receive her chemotherapy after her mastectomy rather than before surgery.  Her chemotherapy therefore was started more than two months later than her doctors had recommended.  (For triple negative breast cancer, presurgical [neoadjuvant] treatment is often recommended in an effort to shrink the tumors and improve patient prognosis.)  Dr. Jones confirmed that some of Dr. Koss’s tumor cells have been growing in culture for about six months, but explained that another six months or so are required to determine whether they have successfully established an immortalized triple negative breast cancer cell line.  Though this is extremely encouraging news, there is also upsetting news: Dr. Koss’s breast cancer has now metastasized to her chest wall and lungs.  She also has developed cardiotoxicity secondary to her treatment, including early-stage cardiomyopathy and heart failure.  In speaking of his friend, Dr. Jones noted that, “It’s always a little scary to hear a friend say they were taking a chance on something that could cost their life or health.  I don’t know if, in the same situation, I could do the same.  It’s very brave.”  He also emphasized, “Part of her legacy will be what this does for other women.”  Now THIS is an American hero.

Dr. Kimberly Koss

Dr. Kimberly Koss. Loyola University

  • Did you know that more and more Americans, many of whom are veterans of the Iraq War, are volunteering on their own and creating several emerging groups to fight alongside local Kurdish Peshmerga forces and Christian militias against the terrorist group ISIS in Iraq and Syria?
  • What about the cancer researchers who are devoting their hearts and souls to developing life-saving treatments, while quietly struggling to keep their labs and their critical research afloat as available grant funding continues to disappear? Heroes in my book.
  • And those patients with cancer and other life-limiting or terminal illnesses who participate in clinical trials, understanding that there may be little or no direct therapeutic benefit for themselves and a very real possibility of significant harms, yet who do so for the hope of future patients? We all owe them a tremendous debt of gratitude: true heroes.
  • What about the young spokesman for Shriners Hospitals, the adorable little boy with the huge heart with whom so many of us have fallen in love? In his role as a Patient Ambassador, 12-year-old Alec Cabacungan has brought Shriners Hospitals to the attention of countless folks who before were unaware of the critical orthopedic, spinal cord injury, burn, and other specialty care they have provided to over a million children regardless of families’ ability to pay.  Cabacungan has been diagnosed with osteogenesis imperfecta, a genetic disorder characterized by bone fragility, and he has been affected by more than 50 bone fractures in his young life.  Shriners Hospitals’ “What is Love?” campaign has brought Alec’s radiant smile into millions of living rooms across the country, with the goal of bringing further charitable donations to help support Shriners’ ongoing critical work.  Alec, all of the other Patient Ambassadors, their families, the clinical staff and researchers at Shriners: heroes.  All of them.

alec

alec shriners

  • How about the millions of folks across our country who serve as caregivers for family members—for their children, spouses, adult parents, or siblings–with terminal or life-limiting diseases, including cancer, Alzheimer’s disease, and other dementias? Being a primary family caregiver can be one of the most emotional experiences one may have: it’s often physically, psychologically, and financially draining, stressful, frustrating, upsetting, and it’s never easy.  Yet for so many families, it can also be deeply rewarding and joyful.  As Edward Albert said so eloquently, “The simple act of caring is heroic.”
  • And though I could go on and on, I cannot conclude here without including the volunteer firemen in our communities, often our friends and neighbors, who run toward burning homes, buildings, World Trade Center towers, rather than running away like most of us, risking their own lives to save ours. Our American Heroes.

No, winning an Olympic gold medal, becoming a reality television star, and undergoing a transgender transition in front of the rolling TV cameras do not a hero make.  But today, as I was again trying to ignore the deluge of stories about Jenner’s gowns, swim suits, and latest trips on the town, I saw a short article for the very first time that specifically described what they called Jenner’s transgender activism and her concern over the high suicide rates seen in the transgender community.  Is it possible that over the rush of applause and the flashing cameras, Jenner has begun to hear the words of folks like Beck and to recognize that it’s not all about glitz, glam, celebrity, and cash?   Perhaps she has started to recognize her privileged status and what true struggle is like?  Might she start to worry less about the dress and direct the full focus and determination she had shown so famously as an Olympian to help the next generation of transgender youths feel less isolated and more hopeful?  Dare we hope that she, the media, and so many in our reality show culture will finally begin to recognize that it’s not what transpires in front of the cameras and what’s seen in the public view, but rather, as John Wooden famously said, that “The true test of a man’s character is what he does when no one is watching”?  We shall see.

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