New Beginnings

New Beginnings

I still remember the day I got a call from Bill Aron. I had admired his photography long before I knew it was his, and even more so after our paths began to cross. So I was quite surprised, and pleased that a mutual colleague suggested we speak his new project – a collection of photos and stories of people thriving despite cancer. A long time in the making, New Beginnings: The Triumphs of 120 Cancer Survivors comes to fruition on March 4. It’s an amazing collection of vibrant photos and real-life stories, including mine – and Dr Susan Love’s! The hope, joy and inspiration captures in both pictures and words, is just what the doctor ordered. If you’re interested, both Amazon.com and BN.com are taking pre-orders now!

A Fine Line

A Polish survivor walks through Auschwitz’s infamous “Arbeit Macht Frei” gate after laying wreaths at the execution wall. (Sean Gallup/Getty Images)

Today marks the 70th Anniversary of the liberation of Auschwitz, the Nazi death camp where, over the course of less than 3 years, 1.1 million prisoners were put to death. While most were Jews, others were not exempt: Romani, Polish political prisoners, Jehovah’s Witnesses and gays were also among those sent to the gas chambers. Today, in the snow, 300 survivors of Auschwitz bore witness, again, to the atrocities.

When you listen to their stories many themes emerge, and I believe most of them have critical lessons for us. Today I have been pondering the very thin line between life and death.

  • A compassionate guard pushes you into the work line.
  • The right person takes you under his wing.
  • You have expertise that the Nazi’s needed.
  • Your work detail was late in returning to the camp, and the day’s “quota” is filled.
  • Another in your barracks covers for you when you are sick.
  • You have cigarettes to trade for favors.

For every survivor there are any number of times when fate was on their side, countless times when they ended up in the right line, in the right place, in the right moment. And for one more day, they were spared. And as each new day dawned, life was on the line again.

Nothing can possibly compare to the tragedies suffered in the 20,000 labor, transit and extermination camps of the Nazis; its darkness is without measure. Yet today I find myself exploring the parallels between those survivors and breast cancer “survivors.”

  • Like the Holocaust survivor who has to learn to live with and let go of having survived, I often hear about breast cancer “survivor guilt,” the inability to comprehend why I made, and another didn’t – and the need to figure out what to make of and do with “survival.”
  • Like the Holocaust survivor whose good luck today finds him in the right line at roll call, most of us with breast cancer know that today’s clean scan is luck – and the next one could change everything.
  • Like the Holocaust survivor who doesn’t know if or when his next meal is coming, we wonder about the next life-saving therapy, and the one after that, and whether they will arrive to a trial or clinic in time.
  • Like the Holocaust survivor who fears the ravages of illness or the risk of injury that will send him to the gas chamber, we deal daily with “collateral damage” to our bodies and our minds, and of not knowing where any given downturn might end.

Stanford University Library Special Collections

Our minds seek to make order out of chaos, seek to find the very thin lines that put us in one place or another, that explain the ways in which one instant, a bit of luck, or a bad day can distinguish between life and death. We have quite a bit to learn from these survivors indeed.

Post Script: I know some will object to my use of the word “survivor” in the context of breast cancer, and I appreciate the many perspectives that come to bear on the issue. However, I personally believe that surviving the words “you have cancer” is more than enough to be counted among our survivors. I hope that we can see beyond the language and come to this with an understanding that in both instances we are talking about individuals upon who outside forces have acted in a manner that legitimately threatens their very lives. We are generally comfortable with Holocaust, earthquake, tsunami or flood survivors – and it is in this context that I’ve chosen to use the word herein.

Feeling Isolated? Open the Door

Author, blogger and online friend Nancy Stordahl recently shared a piece on the METAvivor blog about the isolation many metastatic breast cancer patients experience, and the variety of contributing factors. I urge you to read her post here: Ending the Isolation – Every Voice Matters. I agree whole-heartedly with Nancy.

In fact, about a week before I read Nancy’s post I had been thinking about this issue of understanding. Knowing how to share what we endure is a delicate balance of time and place and degree of detail. We are generally well aware that no one around us lives in the disease the way we do, and when we are lucky with effective treatments that aren’t particularly debilitating, our illness is largely invisible. When MBC patients claim that others can’t understand unless they have been here, then we check out of trying to share their experience. If we stick to that, then we perpetuate our own isolation. We can’t blot the door and blame others for not walking through it.

Nancy writes:

If you have observed a loved one suffer and ultimately die from metastatic breast cancer, you understand a whole lot, but still you don’t really know. Until it happens to you and your body, you can’t really know. This is true of many things in life.

Her last line was already in my head before I finished the paragraph before it. It is true for so many things in life. When I trained as a social worker one of the first things we were taught is that we don’t have to have a client’s particular experience to bring forth our empathy – there are many opportunities for us to leverage our own situations to understand the feelings of others. We do so every time we cry at a movie or offer sympathy to another, and in countless other situations. It is true that unless we live through most things we can’t completely understand. It’s also true that we can come close enough to lend support and encouragement, share fears and frustrations, and express our mutual fury at the loss that is metastatic breast cancer.

As always, I am grateful to Nancy for her frank and thought-provoking perspective. While there are plenty of people who don’t want MBC patients to disrupt their own denial, it’s important that we find the ones who are standing at the door with support, thank them, welcome them, and help them learn.

Heaven Can Wait – Death by Cancer

IMG_2497If you haven’t stumbled upon it by now, check out the British Medical Journal’s blog piece by Dr. Richard Smith asserting that death by cancer is the way to go. I am astonished, and I’m not alone. Smith contrasts sudden death, death by dementia, death by organ failure and death by cancer and comes out in favor of the latter. (He conveniently excludes assisted suicide, which is the only situation in which death is in the hands of the patient.) Perhaps, as other bloggers have suggested, more time with end stage cancer patients, seeing first hand what living with cancer looks like (never mind dying from it), would likely provide Smith with some much-needed perspective.

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Self Care?

I dread even writing the words. I resist, deny, justify, ignore, and try to learn the lesson over and over again. I had lunch with a friend recently and we were talking about my trip to Italy. I shared my realization of how much work just caring for myself canbe – walking 2-3 hours a day, getting to my writing, cooking healthy food – that’s a full time job!

“You learned this before,” she says.

Of course, she’s right. In fact, I’ve learned it many times before. And I know I’m not alone in this. Raise your hand if you are POSITIVE you would put your oxygen mask on first when sitting next to a small child…. I think I would, but at the risk of watching my child pass out, I can’t say I’m certain. Thankfully we’re past that age. We’re getting to the age where it’s more likely he’ll have to put my mask on me.

Which begs the question: Why is self care so hard? Is it a male/female thing? A motherhood thing?Why is the line between self-care and selfish blurry? Why does caring for others come naturally, but caring for ourselves require reminders and negotiations and, sometimes, very loud wake-up calls? More

Welcome Back…

IMG_5260

Remember me?

I know, it’s been quite some time. Again. And to the extent that I believe in resolutions, I yet again resolve to keep this blog active. The truth is, I think about it daily, but life gets in the way sometimes. So here’s a quick update about life, and a deeply sincere hope that I will find the time to hang out here more often!

I have a sort of “bucket list.” I don’t really maintain it, I couldn’t even tell you what’s on it, but there are things that I want to do before I die. So I made the stars align and planned a six-week trip to Italy. Yes, Italy. Yes, six weeks. And each day I lived the dream. I rented an apartment in Verona – a city historic enough to interest me and small enough to let me write. My goal was to make serious progress on a manuscript that has been hanging over me for years. (Mission accomplished. It’s no where near done, but progress was made!) Verona was the perfect city. The historic district is small enough to be easily walked, the sites were magnificent, and when it was time to write I didn’t feel distracted by the multitude of tourist options.

I got to “live” there for a bit. More

Komen Shuts Down Other Opinions

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

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

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

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

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