RIP Laurie Becklund: Journalist Wanted Big Data to Tackle Metastatic Breast Cancer

katherinembc:

I didn’t know Laurie, but we did exchange emails this past fall as she prepared her MedX talk. She was a gifted journalist and we are truly fortunate she used her talents as a reporter to explain the urgent need for change in metastatic breast cancer outcomes and propose a Big Data innovation.

Originally posted on MBCNbuzz:

Laurie's 2013 MedX talk Laurie’s 2013 MedX talk

Journalist Laurie Becklund died on February 8, 2015 from metastatic breast cancer at age 66. On February 20, 2015, Laurie’s byline appeared in the Los Angeles Times for the last time.

In an Op-Ed piece called “As I Lay Dying, Laurie explained how she came to be one of 150,000 US people living with metastatic breast cancer and one of the 40,000 Americans this incurable disease will kill this year.

As Laurie noted in her opening sentence, metastatic breast cancer is the kind that kills people–no one dies from early-stage breast cancer. But as Laurie discovered, cancer can come back–even decades after someone successfully completes their treatment. In Laurie’s case, her breast cancer came back 13 years after her initial diagnosis. Scans revealed the cancer was now in her bones, liver, lungs and brain. When cancer spreads outside the breast, it is no longer curable–with…

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Submit Your Writing Assignment: Part 2 of the Memoir Webinar with Abigail Thomas

katherinembc:

I could listen to Abigail Thomas read the phone book. She is so down to earth and her advice is so practical. Really enjoyed her talk; look forward to next week’s!

Originally posted on MBCNbuzz:

Click on image to replay the webinar. Click on image to replay the webinar.

MBCN and SHARE had a terrific time with Abigail Thomas during  Part One of our Memoir Writing webinar. She is funny, warm and honest–what a pleasant distraction on a cold winter’s day.

You can listen to a recording of her talk here; Abigail’s presentation, including several of the poems she referenced, can be found here.

Abigail gave us an assignment for next week’s session. Write two page on one of the following topics:

  • 9 Things I Do Remember & 9 Things I Don’t Remember
  • It Takes Place in Water
  • It’s Not Funny (With “It’s not funny” being the second sentence.)
  • There Are Many Things I Miss
  • I’m Afraid of the Attic
  • Any Ten Years of Your Life (Using sentences that are only three words long).

Don't be shy! Send your two pages to cbenjamin@sharecancersupport.org Don’t be shy! Send your two pages to cbenjamin@sharecancersupport.org

Abigail has graciously agreed…

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Memoir Writing Webinar With Abigail Thomas This Month

I am looking forward to MBCN/SHARE’s memoir writing webinar next week.

Part One is Tuesday, February 17; Part Two follows on the next Tuesday, February 24, 2015. Both take place at from 1:30 to 2:30 PM EST. Register here: http://www.sharecancersupport.org/share-new/learn/programs/write_your_own_memoir/

Presenter Abigail Thomas has already given us a two-page “assignment”:

  1. Take an 10 years of your life.
  2. Reduce them to two pages.
  3. Each sentence should be only three words long.

Example: He was cute. I was clueless. It seemed right.

Thomas is famous for this exercise—read what she told Oprah’s readers here.

I know that some people don’t necessarily want to write a formal memoir but would still like to preserve some memories. Why not take a look at StoryCorps site?  It offers this list of questions to help get the conversation started. Here is a video that explains how you can interview someone to preserve their story.

Find more great questions here

Find more great questions here

Great Questions for Anyone

  • Who has been the most important person in your life? Can you tell me about him or her?
  • What was the happiest moment of your life? The saddest?
  • Who has been the biggest influence on your life? What lessons did that person teach you?
  • Who has been the kindest to you in your life?
  • What are the most important lessons you’ve learned in life?
  • What is your earliest memory?
  • What is your favorite memory of me?
  • Are there any funny stories your family tells about you that come to mind?
  • Are there any funny stories or memories or characters from your life that you want to tell me about?
  • What are you proudest of?
  • When in life have you felt most alone?
  • If you could hold on to one memory from your life forever, what would that be?
  • How has your life been different than what you’d imagined?
  • How would you like to be remembered?
  • Do you have any regrets?
  • What does your future hold?
  • What are your hopes for what the future holds for me? For my children?
  • If this was to be our very last conversation, is there anything you’d want to say to me
  • For your great great grandchildren listening to this years from now: is there any wisdom you’d want to pass on to them? What would you want them to know?
  • Is there anything that you’ve never told me but want to tell me now?
  • Is there something about me that you’ve always wanted to know but have never asked?

Source: StoryCorps.org

I look forward to MBCN/SHARE’s two-part webinar. Register here: Register here: http://www.sharecancersupport.org/share-new/learn/programs/write_your_own_memoir/

And, to conclude with a three-word sentence a la Abigail Lewis:

Do It Now!

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Cancer Gets the Ken Burns’ Treatment on PBS (And Why I Won’t Be Watching It)

Whenever I see filmmaker Ken Burns in the news, I marvel at his eternal boyishness. How can someone born during the Eisenhower administration look no older than 35? Could Burns be some of sort of latter-day Dorian Gray? Is there a film locked in his attic featuring his 61-year-old doppelgänger? Has he ever considered wearing a part in his hair?

A documentary devoted to all of these details is one that I would watch. The forthcoming “Cancer: The Emperor of All Maladies” is not — at least judging by the trailer.

Burns, as executive producer, gets his name above the title. Barak Goodman is the actual director. Naturally, because Burns’ name is well known, PBS and the film production company are leveraging that connection.

Burns’ mother died from metastatic breast cancer when he was 11. “There was never a time when I didn’t know my mother was sick,” he told an interviewer. Burns ascribes his mother’s death with influencing his career — his documentaries are rooted in the past, an attempt to breathe new life into those who are long gone.

Siddhartha Mukherjee’s popular book inspired the six-hour film airing on PBS in March 2015. The book is a “biography” of cancer from ancient Egypt to the present day. According to promotional materials, the PBS effort is three films in one: a historical documentary; an intimate vérité film; and a scientific and investigative report. Perhaps we will learn how many licks it takes to get to the Tootsie Roll center of a Tootsie Pop, too.

One of the hallmarks of a Ken Burns’ documentary is length: his series on baseball was 19 hours long, his portrait of the Roosevelts unfolded over 14 hours and his landmark Civil War effort clocked in at 11 hours. Yet Burns and Goodman propose to cover cancer’s biography — all 5,000 years of it — in six hours.

The series looks at cancer’s past, present and future. Mukherjee, who appears throughout the film, anchors the historical section — I’m sure that part will be riveting.

I’m dubious about the second segment, which takes viewers to the pediatric oncology ward at Johns Hopkins Kimmel Cancer Center in Baltimore as well as the Charleston Area Medical Center (CAMC) for some wide-ranging patient encounters.

This sounds like talking to some people from Los Angeles, Cedar Rapids, Tallahassee and New York City and assuming you know what life is like in Phoenix, Dallas, Detroit or Ogunquit, Maine. Even Ken Burns limited himself to one war (Civil), one sport (baseball) and one family (Roosevelt).

If I made a documentary about cancer there would be an entire segment devoted to explaining that all cancer is not alike and even one type of cancer can be quite complex depending on stage, subtype and other factors (early-stage breast cancer, for example is vastly different from metastatic breast cancer and ER/PR+ HER2- is a different kettle of fish than triple negative breast cancer). I hope that message comes across in “Cancer: The Emperor of All Maladies.” (I would also compile some of the dumbest things ever said to cancer patients—there would be no shortage of material! Think of the DVD extras!)

From the trailer, we know that the film will wrap up with the obligatory Big, Hopeful Finish. “You saved my life, Doctor!” exclaims one patient. Researchers use words such as “stunning” and “exhilarating” to describe the future of cancer research.

I want to believe that, I really do.

Unfortunately, progress has been painfully slow on some cancer fronts. Just ask someone with advanced pancreatic cancer. Readers will recall that Mukherjee’s book ends with a reflection on the evolution of cancer treatments, from ancient Egypt to 2050 AD. “[Now] give Atossa metastatic pancreatic cancer in 500 BC,” wrote Mukherjee. “Her prognosis is unlikely to change by more than a few months over 2,500 years.”

Part of the challenge with pancreatic cancer is that early detection is almost impossible. But all U.S. people should be alarmed at the anemic level of government-supported research.

When adjusted for inflation, the NIH budget is nearly 25 percent below its 2003 level. “ASCO is deeply concerned about continued stagnation of federal research funding,” ASCO immediate-past President Clifford A. Hudis, MD, FACP said. “All types of high-quality cancer research projects are at risk of being slowed, halted or simply not pursued. In addition to the challenges this presents to basic and translational research, NCI recently announced plans to cut the overall patient enrollment target for cancer clinical trials by 15 percent, after having already scaled back and consolidated its National Clinical Trials Network.”

Hudis previously sounded this alarm in his introduction to ASCO’s 2013 Clinical Cancer Advances report: “ Federal funding for cancer research has steadily eroded over the past decade, and only 15 percent of the ever-shrinking budget is actually spent on clinical trials. This dismal reality threatens the pace of progress against cancer and undermines our ability to address the continuing needs of our patients.”

It’s possible this Ken Burns-produced cancer film will inspire outraged viewers to rush to their laptops and fire off angry letters to their elected officials about the urgent need to restore NCI funding. But I doubt it.

I’m not feeling too optimistic about private funding. The “More Birthdays” people, to offer just one example, aren’t exactly tearing up the research pea patch either.

“When I joined the Board, funding for external research grants was 22% and when I left it was down to 10%,” former American Cancer Society President Vincent T. DeVita Jr., MD told MedPage Today. As MedPage reports, Devita Jr. called the situation “scandalous,” especially since ACS has presented itself to the grassroots public as a research organization while putting its money into other projects. (Including being among the sponsors of the PBS cancer film.)

Burns, Mukhurjee and Goodman have a fourth partner on this film: Laura Ziskin. Ziskin a film producer and a co-founder of Stand Up 2 Cancer, was diagnosed with lobular Stage 3 estrogen-receptor positive breast cancer in 2004.

In 2010, she learned her breast cancer had metastasized to her liver. There is no cure for metastatic breast cancer.

Ziskin died at age 61 in 2011. As the “Meet the Creators” section of the film site puts it, “She lived courageously with the disease that ultimately took her life in June 2011.”

My mom died from inflammatory metastatic breast cancer at age 53.

My mom died from inflammatory metastatic breast cancer at age 53.

Like Ken Burns’ mother, my mom also died from metastatic breast cancer. I was 17. Now I am almost 50 — and like my mom, I have metastatic breast cancer. I will die with or from this disease.

I want a happier ending.

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What Are We Doing About Metastatic Breast Cancer: MBCN Responds to HuffPo’s Barbara Jacoby

katherinembc:

MBCN is a founding member of the Metastatic Breast Cancer Alliance. On October 13, 2014, the MBC Alliance revealed the results of its Landscape Report, Changing the Landscape for People Living with Metastatic Breast Cancer. You can read a summary here: http://mbcalliance.org/docs/MBCA_Exec_Summ_Landscape%20Analysis.pdf.

As one of the 29 cancer organizations working together under the Alliance’s banner, MBCN wants to transform and improve the lives of people living with metastatic breast cancer. One of our goals is to increase the understanding of MBC and how it differs from early stage breast cancer. Reading Barbara Jacoby’s recent HuffPo blog on progress and metastatic breast cancer reinforces the need for the MBC Alliance as well as the ambitious scope of this project. Clearly, we have much work to do. Read on for MBCN’s rebuttal of the HuffPo piece.

Originally posted on MBCNbuzz:

Recently, Barbara Jacoby wrote a blog post entitled, “What Are We Doing about Metastatic Breast Cancer?” In it, she made five assertions that need to be corrected with facts.

JACOBY’S ASSERTION #1

  • Public support and and research funding for those with metastatic breast cancer is more than adequate

THE FACTS: According to an extensive analysis by the Metastatic Breast Cancer Alliance, metastatic breast cancer research makes up only 7% of the $15-billion invested in breast cancer research from 2000- to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom. See www.mbcalliance.org/docs/MBCA_Full_Report_Landscape_Analysis.pdf

JACOBY’S ASSERTION #2

  • Though a great amount of money and research is dedicated to early detection, people should do everything they can to get treated early because that will prevent a metastatic breast cancer diagnosis

THE FACTS: Breast cancer is an extremely complex disease. Some…

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Actress Marcia Strassman Died From Metastatic Breast Cancer

Actress Marcia Strassman was one of very few public figures to openly discuss her Stage IV breast cancer

Actress Marcia Strassman was one of very few public figures to openly discuss her Stage IV breast cancer

Marcia Strassman, the actress best known for her roles in “Welcome Back Kotter” and “Honey, I Shrunk the Kids” died from metastatic breast cancer  this month at age 66. My condolences to her friends and family.

Strassman was something of a hero to me because she was the only famous living person I knew with metastatic breast cancer. I have been on the same drugs as Strassman, so of course I took inspiration that she lived with the disease for seven years.

The actress was one of very few high profile people to talk about having metastatic breast cancer–see this Stand Up 2 Cancer video. Elizabeth Edwards was the last national figure in recent years to share her metastatic breast cancer diagnosis. When Marcia Wallace (the actress who voiced Mrs. Krabapple on “The Simpsons”) died last year, a close friend of hers said she died of breast cancer, but Wallace’s family initially denied this was the case. Understandably, Wallace’s family may not have known what happened.

Although Strassman freely acknowledged her Stage IV diagnosis, not a single news report used the phrases “Stage IV” or “metastatic” breast cancer. I hope I don’t sound petty–to her grieving friends and family I am sure this is is a small point and one that unfortunately does nothing to alleviate their loss.

But it is so important.

Two weeks ago, I participated in a meeting for Chicago-area people living with metastatic breast cancer. Attendees could put on different colored necklaces signifying their breast cancer subtypes: hormone-receptor positive, HER2 positive or triple negative. I was surprised that several women did not know this basic piece of information–one that is the road map to their care and treatment making decisions.

Had these people’s doctors told them the specifics of their disease? Had they asked? Do they understand their treatment plans? We will never make any progress against metastatic breast cancer if we pretend it is all one disease.

Saying that Marcia Strassman died of breast cancer after living with it for seven years somehow implies she died because she let her guard down and WHAM! breast cancer got her.

This is not what happened. When someone dies from breast cancer, they died because the cancer spread beyond the breast and eventually overwhelmed the body.

From published interviews, we know Marcia Strassman was a denovo metastatic breast cancer presentation. This means she was Stage IV from her first diagnosis–when her breast cancer was found, it had already spread to her bones–this is unusual, the majority of those diagnosed with metastatic breast cancer had early stage disease.

Strassman shared that she had lobular breast cancer–i.e., the cancer began in the milk-producing lobules. About 10% of all invasive breast cancers are invasive lobular carcinomas (ILC). (For reference, about 80% are invasive ductal carcinomas (IDC.) Lobular breast cancer grows in sheets–not lumps–and therefore doesn’t show up on mammograms well. (Strassman did in fact have regular mammograms, was a non-smoker and maintained a healthy lifestyle.)

With ILC, for any given stage or grade, the prognosis is similar to that of IDC. The pattern of metastases is slightly different vs. IDC–lobular carcinoma can metastasize to unusual sites, including the gastrointestinal tract, peritoneum, and adnexa (refers to uterus/ovary). Invasive lobular carcinoma is more likely to occur in both breasts compared with other types of breast cancer. ILC tends to occur later in life than IDC — the early 60s as opposed to the mid- to late 50s.

Strassman had a lumpectomy and then began standard of care for hormone-receptor positive breast cancer. According to a 2009 magazine article: “One drug, Femara, an aromatase inhibitor in pill form that Strassman takes every morning, starves tumors of the estrogen they need to grow. The other, Zometa, which is administered in monthly infusions in her doctor’s office, is a bone-building bisphosphonate that can slow deterioration in people with bone metastases.”

Strassman “endorsed” Zometa early on, but either she or the drug company chose to quietly drop the partnership. (The late Barbara Brenner, then the head of Breast Cancer Action, was critical of a 2010 SABCS luncheon featuring Strassman.)

People can do well with bone-only metastatic disease for a long time, often well surpassing the median survival time for Stage IV breast cancer which is two to three years. Although one source reported Strassman had been given 2.5 years to live upon her initial diagnosis, it’s unlikely any oncologist would have offered such a prognosis–they just don’t know. Strassman, with no visceral organ involvement at her diagnosis, would have been on the “good” end of a metastatic diagnosis.

Strassman did so well that, two years after diagnosis, a writer marveled at how good she looked: “Strassman doesn’t look like someone who’s battling a grave illness,” Linda Marsa observed.”Once her condition was stabilized by the combination drug therapy, she had surgery to remove remaining cancerous cells and several lymph nodes. Since then, bone scans have revealed no further deterioration, which is excellent news. She will take some form of therapy for the rest of her life. ‘This is cancer—but it’s a speed bump,’ Strassman insists. ‘You slow down, but once you pass it, you keep going.'”

Although bone mets can be painful and in some cases disabling, generally speaking, from what I understand, they are not immediately life threatening. When breast cancer spreads to a visceral organ–like lungs, liver or brain–that is a different kettle of fish. It should be stressed that some people can and do live with mets to these areas for a long time–but we are all different.

We don’t know exactly what course Strassman’s disease took–only that it almost certainly spread beyond her bones. But we do know one thing for certain: Marcia Strassman died from metastatic breast cancer.

Strassman and some friends talked about her Stage IV diagnosis in this 2009 interview.

Strassman and some friends talked about her Stage IV diagnosis in this 2009 interview.

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Where did cancer education for non-oncologists go?

katherinembc:

The primary care physician is the main point of health contact for many people. Although the median age for breast cancer in the US is 61, young people do get breast cancer. Most women would not get a mammogram until age 40. I hate to say it, but I think I would be more qualified to discuss breast cancer than someone who has zero clinical experience… http://mbcnbuzz.wordpress.com/2013/04/08/a-wake-up-call-for-young-people-with-metastatic-breast-cancer-and-all-of-us/

Originally posted on Cobalt-60:

*Note: This post is based on my (limited) experience as a trainee in medical school and residency at one institution (University of Toronto). If you have had a different experience please share in the comments or on Twitter

On the weekend I wrote “Diagnosing cancer is hard” and said I would later write about what can be changed on the physicians’ side to improve diagnostic skills, and well…I lied. I don’t have any great insights into that. What I would like to discuss is the lack of general oncology teaching for non-oncologists.

Cancer is responsible for 30% of all deaths in Canada; two in five Canadians will develop cancer in their lifetime and one in four will die of it (Canadian Cancer society). Survival rates are increasing, and patients even with advanced or metastatic disease are living longer due to new treatments, turning cancer in many…

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On Amanda Bynes: Cancer Isn’t Funny and Neither is Mental Illness

This morning, an email subject line from the New York Daily News caught my eye: “Amanda Bynes caught acting strange again.” The story outlines in great–some would say gleeful–detail  the actress’ recent shopping trip where she took off her blouse, made inappropriate comments and clearly is unwell.

Reporter Rich Shapiro dutifully concludes the article with this note:  “The ‘Hairspray’ actress was locked in a psychiatric hospital last year, after she was accused of tossing a bong out the window of a Manhattan highrise and later sparking a fire in a stranger’s driveway.”

The New York Daily News is a tabloid–and therefore has an irreverent and over-the-top tone that is much different than the staid tones of the New York Times and other more conservative outlets. Nonetheless, I am shocked that the newspaper considers mental illness fair game for gossip–no different than George Clooney getting married or Gweneth Paltrow getting ‘uncoupled’ from her rock star husband.

Despite Bynes’ obviously incapacitated mental state, Shapiro notes she retains her fashion sense, attempting to shoplift some really pricey items. The only thing that could have made this article more insensitive is if Shapiro described Bynes as Cuckoo for Cocoa Puffs.

I am in an expert in neither Amanda Bynes’ health nor mental illness. Its clear to me, however, that she is incompetent and needs more or better help than that which she is currently getting.  It angers me that some people think mental illness is funny.

We would never to do this someone with a different illness–we’ve recently discussed Joan Lunden’s People magazine cover. Joan elected to appear bald on that cover–a decision that was warmly received and even applauded. Suppose the paparazzi had caught Joan unawares without her wig and published the pictures. What if the New York Daily News had published them and said things such as “Hey Mrs. Clean, where’s the Mister?” or “Joan Lunden caught looking strange with her completely shaved head.” The outcry would be immediate and damning.

The message here is clear: We are nice to celebrity cancer patients because they are just like us and get cancer and deserve our sympathy. We ridicule celebrities who are mentally ill because it’s fun to make fun of other people’s misfortunes. We of course never discuss the crazy aunt in our family or the weird cousin because that reflects poorly on us and besides everyone knows it’s not cool to talk about mental illness.

I remain astonished at the willingness of celebrities to share their own personal health woes as paid endorsers for pharmaceutical companies. I know that Sally Field has weak bones, Terry Bradshaw had  shingles, that John Elway has acid reflux,  and many, many, professional athletes suffer from erectile dysfunction. I am sure there must be celebrities who talk about their mental health, but I can’t think of them.  A Google search reveals celebrities have talked about their depression. Catherine Zeta-Jones freely discussed her bipolar disorder with People and other publications in 2010. But in 2012, she seemed weary and a bit wary:

“You know what, I’m sick of talking about it because I never wanted to be the poster child for this,” Zeta-Jones told “Good Morning America.” “I never wanted this to come out publicly. It came out. And so I dealt with it in the best way I could and that was just say, ‘Look, hey, I’m bipolar.’”

“Everyone has things going on and we deal with them the best we can,” she continued. “We can’t jump from the rooftops shouting, you know, about, ‘I have this, look at me, victim.’ No. We all have issues in life and I’m really happy that I have great friends, great support, and that’s all I can do.”

If you have cancer, inevitably at some point people will say such things as “You are so brave” or “You are an inspiration.” Such declarations make me uncomfortable. Anyone who thinks I am brave has never seen me get out the vacuum to deal with the tiniest of spiders. I honestly can’t think of anything I have done that would qualify me as “inspirational.”

I am a woman with cancer. Before I had cancer I was a cynical, sarcastic and often grouchy woman. Cancer has not and cannot change that. I was not a noble person before and I am not one now.

Before I had cancer, I was a human being deserving of compassion and consideration. That would be still be true regardless of my illness: If I had lung cancer rather than breast cancer or if I had an unquiet mind rather than cellular replication run amuck.

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Ginny D: Being More and Doing Less

GinnyDI was sorry to learn that Virginia “Ginny” Dimpfl died last night at age 58. Because I have another friend named Ginny (Ginny Knackmuhs, my fellow MBCN board member), I thought of  her as “Ginny D.”  Ginny K lives in New Jersey and is thus “East Coast Ginny.” Ginny D lived in San Francisco and was therefore, “West Coast Ginny.”

Ginny D.  and I spoke on the phone several times in the past few months–she was interested in volunteering with the Metastatic Breast Cancer Network. Ginny D. spent the past two decades in marketing communications with Hewlett Packard. She must have been perfect for that job–she was warm, organized and direct–within a few minutes of our first conversation, she had outlined a great idea for MBCN’s annual conference. She had energy and enthusiasm–I really looked forward to meeting her in person.

But that was not to be. Ginny D and I spoke for last time about a month ago. Her treatment was not working and she was looking for a clinical trial.  Despite this dizzying turn of events (and attendant physical discomfort) Ginny D’s voice was no less cheerful or enthusiastic. She was sorry she couldn’t do the project we’d discussed–although we barely knew each other, I sensed Ginny D. was a person with a keenly developed sense of responsibility–if she said she was going to do something, she wanted to honor that commitment. I assured her everything would be fine and that of course taking care of herself should be her top priority.

Ginny D was first diagnosed with Stage IIb, ER/PR+, HER2 negative breast cancer in May of 2012. She had neoadjuvant chemo, a mastectomy and radiation in January 2013.  For a year, all was well–but in January 2014 she learned she had liver mets. “I have moved from a corporate marketing career, to focus on ‘being’ and ‘writing,’ ” she said in June 2014 when she contacted MBCN. “The struggles are different, the questions more, the meaning of all greater. I now view breast cancer as entirely different disease.”

Ginny D submitted the following essay to the Bay Area Breast Cancer Connections Annual Writing Contest. She won the contest.

Today Is Enough

By Virginia Dimpfl

New York was shivering under a polar vortex while here in California we were doing daily rain dances to ward off one of the worst droughts in history. But I was off to The Big Apple in the morning with some gal pals and nothing was going to deter me. I had a great plan: four friends, three plays, two pizzas, one shopping expedition, all finished off nicely with a walk through Central Park in the snow and a whole lot of laughs in between.

It had been exactly one year since I completed my breast cancer treatment, and I was still practicing when to say “yes” and when to say “no.” I was saying yes to fun, friends and family that made me laugh out loud, and who supported and encouraged me to move on from what was no longer working in my life. I said no to the demands of my corporate job in favor of the more flexible hours of consulting, and was declining dinner parties that required me to bring the apps, not the software kind, but those featuring the latest artisanal cheese, skewered this, roasted that, or pizza topped with arugula. Going away with girlfriends for the weekend, however, was new for me.

I was a work in progress, educating myself and working hard at doing all I could to keep the cancer from recurring. I threw out the last of the toxic cleaning supplies and plastic food containers, hung out in the aisles of health food stores, read shampoo labels and dropped off truckloads of pots and pans with coatings of unknown origins. I was determined to live healthier, more joyfully and with greater purpose than ever before. I had accepted the moniker of ‘survivor.’

Walking through our front door the night before leaving, I was anxious to tell my husband, the latest details of my New York travel plans. He didn’t so much as greet me at the door as simply handed me the phone, “It’s your Doctor.” In a New York minute, all of my joyful doing and practicing of new life lessons faded to grey as the anxiety of the cancer returning came into view. On the other end of the line, my oncologist encouraged me to enjoy my weekend away assuring me that we would redo my blood work when I returned. In the meantime, she would set up an ultrasound and MRI just in case. I hung up knowing that “when I returned” I would be facing the news that my cancer had returned unwelcomed.

It has now been six months since I received the diagnosis of metastatic breast cancer. I am one of more than 155,000 men and women for whom there is no cure. My course of treatment is not as clearly defined as it was with my initial diagnosis. I will stay on an oral chemotherapy regimen until the cancer cells are no longer retreating or the side effects become too debilitating. After that I will consider the next course of treatment and the next and the next. But, so far, so good.

With metastatic breast cancer comes one kind of clarity: I no longer live with burden of uncertainty of whether the cancer will return. I live, instead with the knowledge that it has returned. This unconsoling clarity raises more uncertainties, different burdens, new questions. Am I still a survivor? Will the cancer metastasize to other organs? What does this all mean for my quality of life? How do I want to spend my days and nights now? How many more days and nights do I have to spend?

Of course, these are big life questions to which there are no universal or certain answers. But my new reality requires new learnings and new knowledge. Here’s some of what I know today:

I know that I don’t want to go to battle against something that has no known cause or cure, rather I want to continue to nurture the compassion in myself that will help make a difference to me and others in my life.

I know that I need to find new language that describes my own personal journey and that being a ‘survivor’ is no longer adequate or descriptive enough as I face the limits of this metaphor.

I know that some days I am better and more skilled at living with new uncertainties than on others.

What I have done, and what I’m doing is enough. It is enough to read a poem, to drive my neighbor to church on Sundays, to walk 3 – not run 5 – miles with a friend, to send a surprise riddle to a grandniece or nephew. It is enough to write a letter, sign a petition, donate my time and money to those organizations that matter most to me.

I know that for today it is enough to practice being more and doing less.

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Hey Joan Lunden: Stage IV Wants More!

BREAKING NEWS 9/30/2014:  Jen Campisano WILL be on the Today Show on Thursday. Jen writes: “No  idea how this happened, but the today show called to apologize and ask me to share my story in a segment to air Thursday. I think this is a direct result of all your emails, posts, and tweets. I will do my best to make you guys proud and call attention to MBC.”   Go Jen!!! Read Jen’s original post here: http://www.boobyandthebeast.com/

 

Earlier this year, Joan Lunden was diagnosed with Stage 2 triple-negative breast cancer.  Most people recall the 64-year-old Lunden  from her role as the co-host of ABC’s Good Morning America from 1980-97.

Joan has triple negative breast cancer. About 10-20% of breast cancers test negative for both hormone receptors and HER2 in the lab, which means they are triple-negative. Since hormones are not supporting its growth, the cancer is unlikely to respond to hormonal therapies such as Tamoxifen, Femara, Faslodex etc. Triple-negative breast cancer also is unlikely to respond to medications that target HER2, such as Herceptin. For someone with Stage IV triple negative breast cancer, the reality is tough it is generally chemo, chemo and more chemo. And unlike Lunden, who was lucky enough to FINISH her chemo after 12 weeks, people with metastatic breast cancer are ALWAYS on treatment–it is literally for life.

Lunden, who shaved her head prior to chemo, opted to appear bald on the October cover of  PEOPLE magazine. It is a beautiful picture–we should all look that good at 64. (We should all BE 64…but I digress.)

“I  WILL BEAT THIS” Joan declares in the headline. I certainly hope that is the case. But per breastcancer.org  triple negative tends to be more aggressive than other types of breast cancer. Studies have shown that triple-negative breast cancer is more likely to spread beyond the breast and more likely to recur (come back) after treatment. These risks appear to be greatest in the first few years after treatment.

To her great credit, Lunden is calling attention to triple negative breast cancer. But there is so much more to having cancer than being bald. It does take guts for a woman to go with without a wig or head covering in public–but I know many people who do–and they are just going about their day. They are not “making a statement,” they are being comfortable.

To kick off its October Breast Cancer Awareness Month activities, the Today Show is actively recruiting bald cancer patients to join  Joan on the TODAY Plaza next Wednesday, October 1st.   I, and many other cancer patients received email inquiries from producer Brittany Schreiber (@bschreibs). “Where are you located?” Brittany wrote. “Could you make it to our Rockefeller Center Plaza in  New York City?  Please reply with your name, location, phone number,
age, and a current photo.”

One of my metastatic friends lives in New York and wanted to participate. Once the producers saw she has hair, however, they rescinded her invitation to join Joan on the plaza. Never mind that this woman is far younger than Joan and, by her mere presence, could demonstrate that young people not only get breast cancer, they also get metastatic breast cancer. (No one dies from early stage breast cancer. When cancer spreads beyond the breast–i.e., Stage IV, that is what people die from–when cancer goes to the bone, liver, lungs, brain or some combo.)
Joan Lunden is 64 and bald and soon to finish her early stage breast cancer treatments. Apparently that is the only “acceptable” image of breast cancer.

Shirley Mertz, president of the Metastatic Breast Cancer Network, has been living with metastatic breast cancer since 2003. She has never been bald. MBCN’s vice president, Ginny Knackmuhs,  has been living with metastatic breast cancer since 2009. She has never been bald. I have also been living with metastatic breast cancer and I have never been bald either.

 

Until now:

 

heyjoansee

 

Here are 13 Things Everyone Should Know About Metastatic Breast Cancer: http://mbcn.org/developing-awareness/category/13-things-everyone-should-know-about-metastatic-breast-cancer

Perhaps we should add a 14th Thing: Not Everyone With Breast Cancer–Metastatic or Not–Is Necessarily Bald!

 

 

 

 

Thanks!

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