Komen Shuts Down Other Opinions

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from politico.com

Yesterday I wrote about my utter astonishment in the “Singing Mammogram” released by Komen. A quick read of Twitter, as well as comments on my blog, suggest I’m not alone. In fact, it would seem that enough people offered negative feedback on the YouTube page that Komen has turned off the comments.

As the president of another breast cancer organization, I readily recognize that not everyone will agree with me, or with our organization’s take on the issues. I know that there are many opinions. I also know that I’m pretty strong in stating mine. I don’t tell people that they were wrong, but rather that I disagree. I don’t eliminate opinions I disagree with. And I most certainly never, EVER, no matter how confrontational or oppositional a comment, fail to invite open discourse on my blog.

As amazed as I am that Komen approved such a demeaning and sexist video, I’m even more amazed that they have sought to avoid dialogue by simply ignoring the voices of anyone who doesn’t support them.

Is this really how a leading breast cancer organization should behave? How will shutting down our voices lead to “the cure?” What say you?

A Singing Mammogram? #AllKindsOfWrong

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I hate Pinktober to begin with. I avoid the stores, shut down the requests for donations, and prefer to hibernate until Movember. But METAvivor has much work to do and we don’t have time for distractions. Until this arrived in my email today: 

This is so many kinds of wrong the the words are jumbled in my head. Let’s dissect, shall we?

  • “Boobs ba boobs ba boobs ta tata.” Really? Is there a male body part that is EVER talked about that way? EVER?
  • “Dudes and babies love em.” Well, great, because my breast were all about being available for others to love. How very hetero of them…
  • “B cups or DDs, E, Fs, we love you Gs.” And if women sang about penis size, would it STILL be charming?
  • And bringing it home, “Please don’t forget to share this reminder to check your pair.” Thanks for that! Care to get mine from pathology for me? (It’s not as easy as you think…)

I’ll ask the questions we always ask…

  • If this were another kind of cancer, what is the chance we’d see an upbeat, retro video using nearly every slang term for a body part? Can you see it for prostate? Testicular cancer?
  • Why, if advocates can figure out that this is about biology and not early detection, can’t Komen?
  • How is it that we are still treating women like children? Cutesy songs to remind us to check our boobies?

Ultimately, I would love to know how the HELL anyone at Komen think this acceptable? I was as optimistic as anyone about the changes at the top, and I appreciate that this is the local LA chapter, but seriously NO ONE at ANY level of Komen could see how demeaning, sexist, insulting, and vile this is?

I know – I’ll be told by many to lighten up, that I take this too seriously. So my questions for those who think this is cute and that I’m over-reacting:

  • How lightly shall I take my fatal cancer? What’s the right level of “cute” for you?
  • And how the HELL do I explain to my teenage son to RESPECT WOMEN when this crap is out there?

Seriously, I still can’t think straight. PLEASE jump right into the conversation!

Pulling No Punches

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It has been a crazy and exciting month for METAvivor! We have lots of big news, and the first is our new video. As you’ve come to expect, METAvivor tells it like it is. Tell me what you think!

Shifting Awareness: Mesothelioma

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Breast cancer awareness overshadows so completely that it bleeds right into September. You’re probably not even aware that today is Mesothelioma Awareness Day – or what mesothelioma is. Let me tell you a bit about it…

BarbaraI often think about the end of 2001 as our last days of innocence. We joined my husband John’s family for a week-long Caribbean cruise. We were a party of 14, and I have to admit I was a bit apprehensive. It was a big boat, to be sure, but a relative could be lurking behind any porthole. Then there was our active, inquisitive, knows-no-limits three-year-old son Zach who, in my mind’s eye, kept climbing up the bars for a better look at the ocean below. He was just the right size to slip through the rails. However, besides a command performance at dinner (where Zach was taught the “slide the tines of the fork through the tube” method of penne consumption by his uncle, we came and went as we pleased. That meant group shore excursions, magazines shared at the pool deck, and a command performance in the ship’s day camp Christmas play.

Within six weeks of returning home I was diagnosed with Stage II breast cancer. We received incredible support from everyone, despite the distance between Los Angeles, where we live, and Chicago, where the rest of our family are. We plowed through the six rounds of chemo and another six weeks of surgery and recovery. Zach scored a trip with cousins to San Diego, where they revealed his addiction to chocolate. By August there was nothing left but five years of tamoxifen. We shared a collective sigh of relief, as if we had all dodged a bullet.

Life went on. My son turned four, and then five. I went back to work. We were livin’ the dream, as they say. A major family celebration had us visiting Chicago almost exactly two years and a growing head of hair after I finished my treatments. It was my niece’s bat mitzvah.

That evening in June 2004, my mother-in-law complained of pain in her ribs. When she saw the doctor a few days later her pain was declared a broken rib, and bedrest and pain killers were prescribed. With no relief, she pursued other causes for the pain. Sadly, it took another few weeks to uncover the true cause – mesothelioma.

We were both overwhelmed and stunned by her diagnosis. We knew immediately it was not good news. As is so common with mesothelioma, hers was found late. By the time of her diagnosis the tumor was the size of a grapefruit and was inoperable because it was in the lining of both lungs. Living in Chicago provided excellent access to care, and she immediately found a well-known specialist and began chemotherapy. As my mother-in-law progressed through treatment we began to learn more about mesothelioma and it’s only known cause: asbestos.

Asbestos is one of those things that is too good to be true. It is a naturally occurring combination of mineral fibers that are durable, heat- and fire-resistant, and it had been put to use in countless commercial applications since the US began mining asbestos in the late 1800s. By World War II it was used as insulation, in roofing, and other building applications, as well as common consumer goods.1

Despite ancient Greek and Roman references to the correlation between asbestos and lung disease and premature death in miners, it was still hailed as a “miracle mineral” and saw an upswing of use during the Industrial Revolution. According to History of Asbestos Use, “…records have shown that many business owners who employed the use of asbestos in their facilities knew that the material was dangerous yet continued to allow its use.”2 It wasn’t until the 1970s that legislation was first introduced, and 1989 before asbestos was banned in the United States.

All the while, these microfibers were hiding within the lining of my mother-in-law’s lungs.

It is not uncommon for inhaled asbestos to take 20, even 50 years, to become cancer. While exposure had been wide-spread, cohorts such as miners, tradesmen, ship builders and construction workers had particularly high incidence levels. And perhaps even more offensive – our government failed to protect our naval and marine service members. When these workers came home, they exposed their families to the fibers that clung to their clothing. However, none of these risk factors made sense for a woman in her 60s who grew up in and then had her own well-to-do, professional family. We began to speculate. The concrete factory few miles up the road? The new tract house they built-in the 50s? The filters of her cigarettes? Attorneys had the family look through books and books of product labels, and anything that looked familiar went on the list. The lawyers would then tap the trust funds of each company, where even those that went bankrupt had been court-ordered to leave behind funds for mesothelioma patients and their survivors.

from MesotheliomaBook.com

While her disease progressed beyond treatment, I began to share her story with people in my life. The first question was almost invariably whether she was smoker. As it happens, she had been. And that might have made things worse for her. But I would then explain that she did not have lung cancer, but rather cancer in the pleura, or lining, of her lung. I’ve often wondered what motivated people to raise the “smoking issue” so readily….

When her doctor had nothing left to offer her, we scrambled for another doctor. She was set to see him, but before Thanksgiving she had taken a fall that required residential care. That weekend we spent many hours with her. Our five-year-old sat at her bedside and chattered away, holding her hand and kissing her. We hosted a 48th anniversary party, suspecting she wouldn’t see their 50th. Weeks later she was home, feeling better, but had given up on the new doctor. Hospice came home with her: the poles, the bed, the jars and jars of medications, and virtual strangers coming and going.

I spoke to her every few days. I think it helped that I was both one-step removed from her immediate family, and a cancer survivor myself. She could say the things that would be so hard for her husband and children to hear. She talked about fear and frustration. She talked about faith, in this case abandoned just when she needed it most. She talked about being ready, and not being ready, to die. And, always thinking of others first, she talked a great deal about wanting my father-in-law to find someone new. She didn’t think he was the type of man to be left alone. She was a talker anyway, but as the end of her life approached she had so much to say.

We quickly planned another trip to Chicago, but two days before we were scheduled to leave we got “the call.” She had fallen again, and been hospitalized. My sisters-in-law advised that it was time. While John drove to the airport I found him a flight, and assured him we would follow as scheduled. He drove straight to the hospital where he met his sisters, his father and his aunt, all at his mother’s bedside.

After months of insisting he note come visit her, “You came, Johnny,” were her last words to him. She seemed content to be surrounded by those who loved her so, and she quietly slipped into a coma. When we got there two days later she was still alive, receiving just enough saline in her IV to keep her medicated and pain-free. As for Zach, we carefully explained that it might look like she was asleep, but she wasn’t; that we didn’t know if she could hear us, but we hoped she could; and then we asked him if he wanted to see her. He peeked in the room and then went to find his cousins.

Another two days later, in my sister-in-law’s kitchen, we gathered the younger kids together to tell them she had died. We buried her and together we mourned. We cried, we laughed, we learned to play Jewish maj jongg, we told her stories and we ate. Quietly my sisters-in-law and I slipped away to divide her jewelry and take what we wanted of her things to remember her by. Then we laughed and cried some more.

It is coming up on ten years since she died, and it’s still hard to believe she is gone. I can conjure her laugh when I am down, and I wear red because “red is always a happy color.” We still miss her at every family gathering and certainly at every milestone.

After this many years, it’s hard to judge how well-known mesothelioma is. It is clear, however, that so many misconceptions remain. Not only are support and research very necessary, but the story of asbestos and mesothelioma is a cautionary tale. When I step back and look at what we, as a country, are willing to tolerate for the sake of convenience, I am quite frightened. Where do things like pesticide use and fracking end? How much unknown harm is being done now, even while the potential damage is known? When it comes to mesothelioma, the correlation between exposure and lung disease is ancient, and what I can’t get over, still, is that none of these deaths had to happen.

For more information, and to take action, please contact the Mesothelioma Cancer Alliance. Make your voice matter!

 

1From the National Cancer Institute (cancer.gov) Asbestos Fact Sheet.

2Mesothelioma.com

What’s Your Story?

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readersdigest.co.in

We each have a story – the tale of our journey, with all of it’s twists and turns, ups and downs, peaks and valleys. When metastatic breast cancer enters the scene, lives usually take a dramatic shift.

Each year, as October rolls around, there is a frenzy of pink. Love it or hate it, it’s nearly impossible to avoid! Usaully the focus is “survivorship” and celebrating our “progress.” METAvivor is looking to shake things up a bit. We want to hear, and share, the stories of metastatic breast cancer – women and men, patients, caregivers and those who are living with the void of a loss from MBC. Whether you are a  writer or blogger, singer or songwriter, poet or painter, or just want to tell your tale, we welcome any submissions that can be shared on our blog. (500-800 words is probably the sweet spot, but who’s counting?) Please send us your submission by September 26 and we will include as many as we can. Please send them to: lori@metavivor.org.

So what’s your story?

Of Ice Buckets and Silent Patients

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Barbara Brenner, the first full-time Executive Director of Breast Cancer Action was a 2-time cancer survivor who died of ALS. Even when her voice was silenced by the disease, her writing continued to educate and inspire. She never stopped asking the tough questions, and persisted in her demand for answers. She is missed.

Even as our Facebook feeds rapidly fill with videos of some very cold people (as well as some Three Stooges-grade comedy), the controversy of the ALS Ice Bucket campaign is being challenged.

My take: people have done stranger things for a cause – buying and using carcinogenic products for “the cure” comes to mind. 

Wasting water? Some – yes, absolutely. But I’ve also seen friends stand in a pool and use pool water so that everything but what soaks their clothes is recycled.

Taking away from other charities? That could be. But if you didn’t know before, you probably do now – ALS is devastating. It is like dying from within. While your mind stays sharp, your body parts lose function – use of limbs, voice and even the ability to breathe are inevitable with this disease. I haven’t looked at the numbers in depth, but the ALS Association is well-rated and regardless, the needs of those living with ALS are most certainly worthy.

Are there better fundraising options? Probably. A campaign that will sustain the new funding levels would probably be the ideal option. And that may come. For now, the infusion of over $15.5 million dollars can, if used well, make a meaningful difference.

For me, here’s the biggest issue of all: while practically everyone has heard of Lou Gehrig’s disease, I fear too few of us knew what it was before the Ice Bucket Challenge began. Patients aren’t out and about much, and it’s easy to forget about them. Awareness and education, and helping ALS patients share their voice and their stories matters. It matters a great deal.

You probably know I’m not a huge fan of “awareness” campaigns – I do feel strongly that they need to be tied to action. As a person living with what is often referred to as a “bully disease,” I recognize that there are many levels of awareness. While we are all of breast cancer, inflammatory breast cancer, metaplastic breast cancer and metastatic breast cancer (to name a few), typically remain shrouded, and are not given the attention the severity of these diseases demand.

So, the ice water part is all in fun, but let’s pay careful attention to the heart of the matter: giving voice to patients and supporting an under-funded disease. If you don’t know what it’s like to live with ALS, please watch this video: 

https://www.youtube.com/watch?v=h07OT8p8Oik

Dear Ms. Robach

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An open letter to Good Morning America News Anchor and breast cancer “survivor,” 

Ms. Amy Robach

 

Dear Ms. Robach,

What a journey you have had recently. From what I read in the press, save the persistent chemobrain, you are feeling well. Congratulations! I am quite familiar with the challenges of treatment and surgery, and getting back to everyday life. It looks like nothing can hold you back!

It ends up we have quite a bit in common.

  • Like you, I was diagnosed young and on my first mammogram, when I was 35 years old.
  • Like you, I opted for bilateral mastectomy in hopes that my lobular disease might not occur in the healthy breast also. (You know, of course, that bilateral disease is most common in lobular breast cancer, which is what I have.)
  • Like you I underwent chemotherapy and tamoxifen (5 years was the standard back then).
  • Like you, chemobrain persists.

It seems we have some differences as well. Read the rest of this entry

Listen…

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Scan day is a finely tuned day. Normally it hums. (When it doesn’t: A Day in the Life) I head first to the hospital to be injected with a nuclear chaser. I plead with the tech to leave the IV in place, with sad puppy eyes if needed. I have a 90% success rate.

Next I rush to the doctor’s office to start drinking my CT contrast – yum! An hour and a half later I get my CT scan and the IV is removed (I like that part!)

I then return to the hospital for my bone scan, and about 30 minutes later I’m discharged.

Today is scan day. So far, so good. The tech at the hospital asked if I’d like him to leave the IV in place and was delightful in his glee over conquering my vein by “floating” it in with saline.

I am about 8 minutes late to the doctor’s office, which frankly I knew would happen. The office is particularly busy and I am trying to explain to the many layers of administration that I’m late for my contrast. I understand there are protocols. I know they needed me to see a nurse first, but I also know I’ve been playing this game for more than 12 years. They hush me. Then they try to reassure me that it’s fine.

Except it’s not “fine” because the clock has ticked down another 20 minutes. It’s not “fine” because I still need to get back for my bone scan and the window is short. It’s not “fine” because I don’t need this nuclear trace running through my veins unnecessarily, in the event I don’t make my window. And most of all, it’s not fine because we are looking to see if my cancer has spread even further and there is evidence it has. In fact, it’s not “fine” any time you cause greater anxiety for a patient simply because you aren’t LISTENING.

Speak Up!

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It’s an ironic title for my first blog post in over a month, I know. But its been a truly insane summer, and sadly there hasn’t been time to blog. I’m optimistic that today’s post will turn things around, so keep your fingers crossed for me!

 

So, here’s what prompted today’s thoughts: I had a follow-up doctor’s visit this morning. When we entered the exam room John pointed out a posted announcement of an upcoming program under the heading: Patients Invited. The event is an upcoming lecture about BRCA in this it’s 20th anniversary year. The slate of speakers was impressive, but it was clear something was missing. There wasn’t a patient/advocate in the bunch.

Interesting, huh? After all the progress we have made, when clinicians come together to discuss a topic that is, from the patient perspective, so deeply wrapped up in emotions, their voices don’t even make the agenda. Read the rest of this entry

METAvivor

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By jerise from etsy.com

Exciting news! As of early this week I have slipped into a new role. – president of METAvivor. I have inherited passion and commitment from a small but remarkably strong group of founders and I believe we are on the cusp of the next wave of change. I am grateful for their leadership, for a board who is devoted, and for continuing and emerging volunteers who believe our voices must be heard. I look forward to our continued growth and the hard work ahead. Our dual mission of raising awareness and funds for MBC is critical for all whose lives have brushed up against breast cancer.

I’m sure you’ve heard plenty about METAvivor before, but just in case, here’s the what and why behind my involvement.

We’ve all heard the numbers – of all breast cancer diagnoses, including those with DCIS or Stage 0, 1 in 3 will become metastatic. And I’m sure you also know that patients don’t die from early stage disease. Only metastatic breast cancer (MBC) is fatal.

Read the rest of this entry