Saying Goodbye to Lisa Bonchek Adams

March 15, 2015
Lisa's blog will remain at http://lisabadams.com/

Lisa’s blog will remain at http://lisabadams.com/

Lisa Bonchek Adams  died on March 6, 2015 at age 45 from metastatic breast cancer. Our condolences to Lisa’s family and friends.

Many people first learned of Lisa after she was the subject of stories from Guardian columnist Emma Keller and her husband, former New York Times executive editor Bill Keller in January 2014. The Guardian subsequently removed Emma Keller’s article; MBCN wrote a rebuttal to   Bill Keller’s article shortly after it appeared.

“Bill Keller’s op-ed piece on “Heroic Measures”  (January 12, 2014)  contains egregious factual errors,” we wrote in January 2014.  “It also misrepresents what metastatic breast cancer is and how it is treated.”

We hope that Lisa’s writing will be her legacy. Emma and Bill Keller both questioned Lisa’s motives. Why would would someone share so many intimate details of a devastating illness? Only Lisa could adequately address that issue–but in very general terms, writing about metastatic breast cancer probably provided a small measure of control over a disease where one’s future is mired in uncertainty. As the New York Times put it, people with metastatic breast cancer “live from scan to scan, in three-month gulps, grappling with pain, fatigue, depression, crippling medical costs and debilitating side effects of treatment, hoping the current therapy will keep the disease at bay until the next breakthrough drug comes along.”

We are reminded of Antaeus–the mythological figure whose strength remained intact as along as his feet were still touching the ground.  As long as Lisa could tweet, she remained grounded–strongly connected to her real-life family as well her online tribe.

One reason that Emma Keller was presumably drawn to Lisa’s online output was their shared history. Both Emma and Lisa were diagnosed with early stage breast cancer. Both had mastectomies followed by reconstruction. Both women were originally thought to have DCIS; Adams subsequently learned she had more extensive involvement.

Lisa was diagnosed with Stage 2 breast cancer in 2007 at 37 when her youngest child was 7 months old. In 2012, she learned the cancer had returned and was now metastatic, having spread to her bones.

From the Guardian article, it seemed Emma Keller might have wondered if Lisa’s experience would inform her own at some time in the future. We hope not–but of course we don’t know. We stress that every individual is a statistic of one. We can’t assume anyone’s cancer experience will the blueprint for our own.  Everyone is unique.

Most people with early stage breast cancer will NOT go on to have a metastatic recurrence. Unfortunately, about 30 percent will. Some people erroneously assume people with metastatic breast cancer must have done something wrong–and that’s why their cancer came back. But that is simply not true.

There are currently an estimated 155,000 people living with Stage IV breast cancer in the U.S. Most–about 90 percent–were previously treated for early stage breast cancer. Only about 10 percent were metastatic from their first diagnosis. Why did these patients’ early stage breast cancer cancer come back? How can we prevent this from happening? Those are answers we don’t have today.

Most breast cancer isn’t hereditary–it just happens. Lisa did have a family history of breast cancer–her own mother was diagnosed at age 36 and survives her. The median age for breast cancer in the U.S. is 61–a diagnosis before age 40 is thought to be more indicative of a hereditary cancer–but again, those are answers we don’t have today. Lisa shared that testing showed she (Lisa) wasn’t a carrier of the BRCA1 or BRCA2 mutations. Again, there is still so much we don’t know.

Lisa’s story illustrates the inherent cruelty of this disease. Lisa was a model patient–and an active and informed participant in her own care. She uncomplainingly endured harsh treatments as both an early and advanced stage cancer patient.  From 2012 to the first few months of 2015, she tried at least different six courses of treatment—when one failed, she moved on to the next, just as all of the 155,000 US people currently living with metastatic breast cancer routinely do. Eventually the scan, treat, repeat cycle ended—and Lisa became one of the 40,000 U.S. people to die from breast cancer this year.

Lisa’s story also puts the spotlight on a demographic often overlooked when we talk about breast cancer: young moms. Breast cancer is certainly more prevalent in older women–but it can and does happen to young people. According to American Cancer Society figures 232,340 U.S.  women are diagnosed with invasive breast cancer annually. Of those, about 27,000 are women 45 and under, or about 12 percent, and approximately half of those women are postpartum, defined as being within five years of having given birth.

We didn’t know Lisa personally. We admired her outspokenness and willingness to share the details of her life. Lisa may well be remembered for using social media to communicate the details of her life as a cancer patient,  but she was much more than a person with metastatic breast cancer. She was a daughter, a sister, a wife, a mother and a dog lover, particularly of Corgis. Although she was often serious in recounting the details of her illness, she had a quick wit and a great gift for writing.

In 2011, she recalled that her youngest son initially didn’t call her “Mommy” or “Mama.” Instead, he called her by the term of endearment she often use for him: Cutie. “Where’s Cutie?” he used to say.

Godspeed, Cutie.

Thank you for being you.

 


Improving Your Cancer Patient Experience: Sherri’s Inside Scoop

March 14, 2015

Sherri Fillipo has a unique perspective–she’s a former nurse who has been living with metastatic breast cancer since 2012. Sherri spent more than 25 years as a nurse–first in the operating room and then as a patient safety and process improvement specialist. You can read Part One of Sherri’s story here. In Part Two, she offers some practical tips for patients. –Katherine O’Brien, Secretary, MBCN

 

When were you diagnosed with metastatic disease?

My primary diagnosis was in 2010, five days before my 50th birthday. We were scheduled to take the big 5-0 trip to San Francisco, one of my most favorite cities twelve hours after receiving the diagnosis. We made the trip, although a blur. It rocked me. I had bilateral invasive ductal carcinoma. They stopped counting at five tumors…I am ER+PR+ Her2+ – had bilateral mastectomies and completed my chemo regimen. Later I had reconstruction.

I begged my husband to get me out of the town/state we were living in. Remember I had just moved there and then received my diagnosis? We moved to upstate New York but forgot to leave the cancer in Virginia. Six months after our NY arrival, I was diagnosed with mets to the liver, fall 2012. I made it 22 months off chemo before the spread. Chemo again. Clear until fall 2014. On chemo currently. I am on an odd two-year cycle.

 

What do you want people to know?

I want the world to know if the cancer doesn’t leave the breast, you don’t die of breast cancer.

AND if it didn’t leave the breast, you did not “survive” breast cancer because you were never in imminent danger of dying. (This is what my mother calls my edgy self!)
Unfortunately, while 70 to 80 percent of those treated for early stage breast cancer won’t have  a metastatic recurrence, 20 to 30 percent will–and we don’t know who will have a metastatic recurrence. That’s something many people either don’t know or prefer to avoid thinking about.

I love Dr. Susan Love’s quote: “You can be assured if the NFL is wearing pink, our nation is breast cancer aware!” Meaning, let’s move on beyond basic awareness to concrete action, people.

 

Does being a nurse help or hinder?

Being a nurse both helps and hinders. I have spent my adult life inside hospitals. I understand the strange world of healthcare. I try to be gentle when I am a patient because I will tell you nurses and physicians secretly hate caring for their own. They feel like they are being watched (they are) but like I wrote above, we don’t always speak up. Last week I was at an unfamiliar place for chemo and I knew that there was a protocol that required a 30 minute wait post-therapy. When I broached the topic with my nurse, she told me she had never heard of such a thing and didn’t believe it was true. Ah, there I was in a dilemma. She did not know I was a nurse. I knew what I was talking about but in the end I did not speak up. (I also had a colleague with me who would address that later with the department.)

My frustration not being able to work keeps me blogging and keeps me at the computer researching and reading. I also review articles for the national organization Association of periOperative Registered Nurses (AORN).

My friends and family think I can be too forthcoming, too objective but I cannot help it. I am a nurse. I have a terminal illness. Not enough is being done and I am going to talk and write about it. So, in that sense being a nurse helps put some weight (?) behind some of what I write about.

 

Infusion Centers: How do they work?

I am not going to pretend to understand everyone’s infusion center process. That would be a full-time job! But there are things that can speed up or slow down processes:

  • Having blood work as soon as you arrive – this allows the blood to be processed while you are having vitals taken and beginning to talk to your physician; bloodwork will be run stat which is hospital lingo for being completed within 60 minutes. I have heard of facilities which require you come in on a different day than treatment. That doesn’t sound patient-centered to me and it could cause delays on treatment day if they can’t find your labs or if you need to have them redrawn.
  • I encourage patients to bring in written down questions. This makes the time spent with their physician much more efficient. I carry a small notebook around with me everywhere I go (read: chemo brain) so I have them ready to go when we are together.
  • If you need refill prescriptions, take a look before you leave from home. Write them down in your book. This way when asked, you won’t have to think back on what you may or may not need refilled. While this seems like it is only impacting you, if you think of a physician’s day being a series of dominoes, keeping it efficient for yourself, keeps it efficient for others. Meaning an extra five minutes with you while you sort your meds out in your head added to the next person’s extra five minutes, leaves you if the afternoon patient potentially being seen later than you want.
  • Also, if you forget a symptom or a prescription and end up calling back in to the office, remember that offices have different policies. Some will try and snag the doctor between visits and will call your drug in, while other offices will wait until the end of the day and make potentially dozens of calls to pharmacies. If your office does the snag and grab approach, your call has halted the progress of the flow of the center – not for long but when you add up multiple stops in a day, the flow is going to get backed up. *Note: don’t misinterpret, they all want to help. Don’t let this stop you from calling if you need to.

 

Nurses and Techs: Do they understand MBC?

This is my personal opinion and mine alone. Yes, I think the nurses ‘get’ it but if you were to ask my nurses over the past two years if I have pushed them to talk about death and dying, they would shriek, “Yes! A thousand times!” The truth is they don’t want to talk about it. Even though they are oncology nurses. And if pressed, they will admit it. They also didn’t like when I stopped the Perjeta I was taking. In fact my nurse was livid with me. Not kidding. Then the next time we were together she told me I had rocked her boat. That she had never had a patient tell her oncologist that she was stopping something when they weren’t at end of care. I simply didn’t want diarrhea 24hours a day, seven days a week. She told me she learned so much by having to look at someone else’s perspective. They will tell you, I push them – because I can!  Make sure you clearly communicate your quality of life. If you feel as though your concerns or issues are being dismissed, it might be time to consider making a change in treatment providers.

The techs? No, I don’t think they fully understand the nuances of the disease. I wish they did but  in general, you have to think of them as bright but task driven employees. So, while they know the basics of some diseases, I would not expect them to talk at much depth about them.

 

Who do you talk to if you have a complaint?

It depends on the type of complaint. As a good nurse, I always knew I needed to go up my chain of command and for the most part, that would be a good thing to do – at least at first. If I had a complaint about an employee in my infusion department, I would ask to speak to the manager or director of the department. If you are so inclined, you could speak face-to-face at that time or ask for her business card to call her later.

If it is a complaint that is broader or one that you just don’t feel comfortable talking with unit leadership about, you have several options:

  • Inquire if your hospital has a Patient Advocate – these people spend their lives talking to patients and family members about a myriad of things.
  • Nurse Navigator- Some hospitals have Breast Cancer Navigators who do a wide variety of things for the patient, from assisting with making appointments, to working with financial departments on the patients’ behalf to listening to any issues the patient might have regarding her care.
  • My department also has a social worker, dedicated to oncology. This would be a resource.
  • You can ask to talk to the Director of Patient Safety – this person is always on the lookout to enhance not only safety but the patient experience.
  • You can ask to talk to a member of the Risk Management Department – in some hospitals Patient Advocacy is a part of this department.

 

How do you have a good relationship with your medical team?

I don’t think I have ever been asked this before! Well, you should never have to worry if your nurse or doctor is having a good day or not. They are there to provide care. But the human side of me (the nurse in me?) always tries to interact with each member. I know all too well the behind-the-scenes goings on and I do try to make my time with them pleasant. Sometimes I will say, “Boy, you must be tired. This place is really hopping today.” Or something like that. It humanizes us all.

I think points I made up above would be appreciated by the staff: have your thoughts together, know if you need refills, have your questions/concerns in your head and thank them for taking care of you.

Really, staff love to hear they are doing a good job. If you can, a nice note is always appreciated. (They get photocopied and placed in personnel files and can do wonders at evaluation time!) No need for gifts. Staff can’t accept them anyway but positive words to supervisors, managers etc. go a long way. But only say it if you mean it! If there are problems, see the list above for resolution!


Both Sides Now: What Happens When a Nurse Becomes a Patient?

March 11, 2015

“Once a nurse, now a patient” is how Sherri Fillipo describes herself on her blog.  Sherri was first diagnosed with breast cancer in 2010 just prior to her 50th birthday; her metastatic diagnosis followed in 2012 when she learned her cancer had spread to her liver. This past February, we spoke to Sherri about her guest post (“The Conversation“). We found her observations on end-of-life issues as well as her own recent treatment decisions very compelling. We asked Sherri to tell us more about life on both sides of the bed rail–and as you’ll see, she had some excellent insights! In Part One, Sherri reflects on knowing too much as a nurse and yet feeling overwhelmingly vulnerable as a patient; in Part Two she offers some practical tips for patients.–Katherine O’Brien, Secretary, MBCN

 

I was born and raised in North Carolina about four hours from the coast. Summers were spent at the beach which is why I still love it to this day – everything related to water, swimming, eating all kinds of seafood, collecting seaglass, walking the beaches. My hope was to have retired to the outer banks of NC. Now I just spend as much time there as I can, while I can.

I am married to a great man and between us we have four grown children, two working, two finishing college this year! They have all been marvelous as the disease has gotten more serious. The kids often come to upstate New York where we now live and we always have a great time. We live near the Finger Lakes so wine tasting is almost always on the docket.

I will turn 55 late this summer and will probably spend it at the beach. Though not working now, for 25 plus years, I was a nurse. At the beginning of my career, I worked in the Operating Room and then eventually broadened my specialty to patient safety and process improvement. An ironic twist when I turned from nurse to patient, I wrote an article for the National Patient Safety Foundation (NPSF) the working title was Lying in the Bed Instead of Standing Beside It. At the time NPSF had a column reserved for the “Voice of the Patient” to allow those of us who were receiving care to write about our experiences to better teach caregivers what we, as patients, were really thinking. Below is an excerpt from that article highlighting some of the ways that I was impacted:

Mere months after my husband I relocated, I was diagnosed with invasive bilateral breast cancer. I received the diagnosis over the phone while the television cable repairman was working in the next room, boxes still stacked to the ceiling from our move. I was living in a state where I knew absolutely no one, and I was going to have to begin receiving health care in a hospital where I had no connections, did not know whom to ask for—nor whom to avoid—a lot like every other patient in the world. And I was afraid. Suddenly the patient safety officer was in the bed instead of standing beside it. I suddenly felt vulnerable. I had no appreciation of how long this feeling would walk with me over the next two years. All I knew at the time was that I wanted to go outside and scream, “Hey! I am not yet 50. And what do you mean cancer in both breasts? Isn’t cancer in one enough? I just had a mammogram a year ago. I get one every year. I am the ‘good girl’ who crosses all the t’s and dots all of her i’s. I just left a hospital that opened up a new cancer tower and now I find out I have cancer?”

 

The week I was diagnosed, I went to the hospital for my first exam and for the scheduling of an MRI. My nurse navigator greeted me and my husband by saying, “You must stop by the wig boutique when you leave. It is the most marvelous place with all sorts of choices.” I had not yet decided if I was having a lumpectomy or a mastectomy. How did she know I would be bald soon? I don’t think I even knew her name at that point. I was so rattled by that comment I remember little else of the conversation and was glad that my husband was there to hear it on my behalf. Later I thought about all those patients who come alone and are smacked by something we as health care professionals say that has a completely different impact on the patient than we ever intended.

 

A week later, I had not heard back about the results of the MRI. I called the nurse navigator, who said she would contact the physician. Four calls and two weeks later, the surgeon finally called me back and told me he had just reviewed the MRI with the radiologist. This is first thing he said to me: “Your MRI is a nightmare.” I was sitting on the couch alone in my new home and that word continued to reverberate in my head. Luckily I had a pen and paper, and as he talked I scribbled every word he said, hoping my physician-husband would translate for me.

 

Over the next year, after three surgeries and four rounds of chemotherapy, my perspective on patients and what is said and done to them took on a whole new meaning. I had to tell my nurse, new to the profession, how to catheterize me. Later, I had to ask a more experienced nurse to don sterile gloves after she contaminated her first pair in front of me. To be clear, I received exceptional care. I relay these stories now more aware than ever of how similar events are occurring all across the nation. I now know what it is like to wait fitfully, tearfully for pain medication—to press the call button and wonder if and when it will be answered. (It was always answered, but that fact did not lessen my anxiety each time I used it.)

 

The truth is, patients may feel pervasively vulnerable lying in a bed. I had been told to expect a postoperative dressing change to occur in the office. This was the one thing that I dreaded the most. While wrapped tightly with bandages and with the tissue expanders in place, I could pretend that I was pretty normal looking. But I knew when the dressing came off, my ability to pretend would be over. I was shocked and unprepared when the plastic surgeon flew in while I was still an inpatient, walked up to the bed and began tearing the dressing off my chest (no hand hygiene by the way). Since this was not the plan I had been told, I didn’t understand what was happening. I said, “You’re not taking off my dressing, are you?” Yes, he answered he was. I lay there in disbelief. I said nothing for fear of what I might say or in fear of what he might do. He said to me, “You don’t seem very pleased with the outcome. This is fantastic work!”

 

Later that day, one of the nurses came back and told me that indeed my lack of enthusiasm had him talking about me at the nurses’ station, wondering aloud why I wasn’t more pleased with the results. He was a great surgeon in every way, and today, two years later, I could give him the praise he wanted, but not then. Are we as health care givers in tune, perceptive, able to merge a task with the human component of compassion?

 

I think we need to speak for patients instead of asking them to speak up. While I agree that patients should be active participants in their care, I didn’t have the voice (or the courage, energy, or fortitude) to ask my surgeon to postpone the task, or call a nurse in to be with me while he changed the dressing. Ultimately, the nurse manager reminded the plastic surgeon that I had lost both breasts within the last 48 hours. To expect someone to be happy under those circumstances was asking a bit too much. She spoke for me because I couldn’t speak up.

 

Many months later, after my chemo treatment, when I had just gotten brave enough to face the world without my hated wig, I went to the hospital to have lab work drawn. While standing in line, I heard a phlebotomist say, “Hey there, Buckwheat.” I turned to see who was standing behind me but saw no one. I realized she was talking about me–and I nearly died of embarrassment right there. I had begun feeling a bit like my old self, and this woman, for reasons I still do not understand, thought she was being funny. I left the lab without having my blood drawn that day. Instead the hospital’s patient advocate found me (thanks to my husband, who worked there). After telling her my story, she advocated on my behalf with the laboratory department. She spoke up for me when I was too embarrassed to speak up for myself.

Portions of this article originally appeared in “Speaking for the Patient” in the P.S. Blog, published by the National Patient Safety Foundation; used by permission of  Patient Safety Insight. All rights reserved.

Coming Next: Sherri’s Inside Scoop on Improving Your Patient Experience


MetsMonday: What is Happening Today on Twitter and Beyond? March 2, 2015

March 2, 2015
Beth Fairchild was diagnosed with MBC in her early 30s.

Beth Fairchild was diagnosed with MBC in her early 30s.“I am a mother, a wife, a business owner, an artist, and a lover of all that lives,” is how Beth Fairchild of New Bern, NC describes herself on her Twitter page (@bethfairchildnc). “I also have advanced stage breast cancer.”

Beth Fairchild was diagnosed with metastatic breast cancer in her early 30s. She got together with several online friends — all about her age and all living with Stage IV breast cancer. They launched a website and on Monday, March 2, they plan to flood social media outlets with MBC information and hashtags such as #MetsMonday and #DontIgnoreStageIV. (Blogger Nancy Stordahl is credited with the ongoing #MetsMonday hashtag.)

Their goal with Project Hashtag as they have dubbed it, is to get MBC trending on Twitter and beyond.

Beth Fairchild’s determination to get the message out about metastatic breast cancer practically jumps off the screen — whether it is on Facebook, Twitter or this February 27, 2015 television interview.We were impressed with Beth’s poise and obvious preparation — she clearly had done her homework—she told viewers no one dies of early stage breast cancer—when cancer spreads beyond the breast to a vital organ that is was kills people. Most people treated for early stage breast cancer won’t have a metastatic recurrence—but unfortunately about 30% will—and there is no cure for metastatic breast cancer in 2015. Finally, Beth decried the woefully underfunded state of metastatic breast cancer research.

Early detection would not have helped Beth — most women with no family history would not get a mammogram until they are 50 years old. The median age for a US woman with breast cancer is 61. Cancer is supposed to be a disease of aging.

The answer is not to give 30-year-old women mammograms. It is to determine the scope of the problem.

Rebecca H. Johnson, MD, of Seattle (Washington) Children’s Hospital and the University of Washington in Seattle, noticed that evidence from the National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) database suggested that incidence of metastatic breast cancer in young women is on the rise. Johnson and her fellow researchers released a study that found “a small but statistically significant increase” in metastatic breast cancer over the last three decades among U.S. women aged 25 to 39 years.

During the past 30 years, more women ages 25 to 39 were diagnosed with metastatic breast cancer —  from 1.53 cases per 100,000 women in 1976 to 2.90 cases per 100,000 in 2009. This means that about 800 women younger than 40 are diagnosed with metastatic breast cancer each year now, compared to about 250 per year in 1976. While the increase is relatively small, it’s very troubling.

Changing the Landscape for People Living With Metastatic Breast Cancer” was published in 2014—the first output from a newly formed alliance of 29 cancer organizations. (MBCN Is a co-founder of the Metastatic Breast Cancer Alliance.) In a nutshell, according to the report’s authors, there’s a lack of awareness about metastatic breast cancer and how it differs from early stage breast cancer, too little research funding, and lack of accurate statistics on incidence, prevalence and survival as well as limited information and support services for those living with the disease.

We have written at length about how the US cancer registry doesn’t accurately track women with breast cancer as well as the dismal US federal funding for ALL cancer research—we won’t rehash that discussion here.

We can’t tell the entire metastatic breast cancer story in one day or one blog post. We know we need more research for Stage IV breast cancer. What can we tell people beyond that?

We were particularly taken with one question the Metastatic Breast Cancer Alliance raised in its Landscape Analysis: What gaps or roadblocks exist that hinder advances in MBC research?

Research Funding

>MBC research has been underfunded (approximately <5% of breast cancer funding).

>Overall cancer research is also underfunded (0.1% of the Federal budget.) Other areas receive more funding including the military, farm subsidies and education.

Matched Tissue Samples

>To advance MBC research, better access to tissue is needed, including the primary tumor and interval blood samples collected and banked between the primary and development of the recurrent metastatic tumor.

MBC tissue from different populations needs to be studied (e.g., MBC in younger, premenopausal women vs. MBC in older women).

Model Systems

>The previously available laboratory models for MBC research were discouraging but in 2013 and 2014, several laboratories have demonstrated interesting MBC models.

MBC models need to be validated an standardized across laboratories.

Academic-Initiated Clinical Trials

>Academics have not focused enough on MBC (in basic research, clinical trials or cooperative groups), although focus is rapidly shifting to MBC as a priority

>MBC research is complicated, costly and time consuming (e.g., early breast cancer studies in animals can be two or three months; MBC animal studies can take up to 9 months to run a single set of animal experiments).

>Lack of academic involvement has resulted in MBC trials being led by the pharmaceutical industry and business interests, including correlative science studies.

Epidemiology

>We need to better understand the epidemiology of MBC. How many patients have a recurrence? What are their treatments and responses? How long do they survive?

There’s so much to do — and we have shared only a tiny glimpse at the hurdles facing those trying to make a difference in metastatic breast cancer outcomes.

Every Monday is #MetsMonday. Let’s keep the conversation going!

Beth and her family in 2012.

Beth and her family in 2012.


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

February 22, 2015
Laurie's 2013 MedX talk

Laurie’s 2014 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 metastatic breast cancer the goal is to control the disease for as long as possible.

For the past six years, Laurie, like most people diagnosed with metastatic  breast cancer, lived her life in three-month increments. Every 90 days or so, someone with MBC  faces a battery of scans to see what the cancer is doing. If the current drug is working, you stay on it. If it isn’t working, you try the next line of treatment. The average patient may receive eight or 10 different treatment regimens in sequence. Eventually all treatments stop working.

In December 2014, Laurie learned there was nothing left to do or try.

“I am dying, literally, at my home in Hollywood, of metastatic breast cancer,” Laurie wrote. “For six years I’ve known I was going to die. I just didn’t know when.”

Laurie made her family and friends promise not to describe her as having fought a courageous battle with breast cancer:  “This tired, trite line dishonors the dead and the dying by suggesting that we, the victims, are responsible for our deaths or that the fight we were in was ever fair.”

In her Op-Ed, Laurie recalled attending the Metastatic Breast Cancer Network’s  2010 conference in Indianapolis. “In one of the most powerful rituals I have ever seen, the group’s president asked all of us to stand, then sit back down when she reached the number of years since our diagnosis. At two years, most had to sit down.”

Laurie asked to be excluded from any photos or videos from that conference. As she explained in her editorial, in 2010 she didn’t want to call attention to herself or the disease. “Who would ever sign another book contract with a dying woman? Or remember Laurie Becklund, valedictorian, Fulbright scholar, former Times staff writer who exposed the Salvadoran death squads and helped The Times win a Pulitzer Prize for coverage of the 1992 L.A. riots? More important, and more honest, who would ever again look at me just as Laurie?”

It is probably fair to say meeting hundreds of other people living with metastatic breast cancer at that 2010 event gave Laurie a fresh perspective. In her LA Times essay, she describes meeting MBCN’s then president Ellen Moskowitz and former vice president Suzanne Hebert. (Ellen and Suzanne died within weeks of each other in 2012.)

By September 2014, Laurie had evolved from a reluctant conference participant to passionate metastatic breast cancer research advocate.  She was among the e-patients selected to address  Stanford’s Medicine X conference. Her presentation was called “Treat Me Like a Statistic and Save My Life.” 

In August 2014,  as she was working on her MedX speech, Laurie contacted MBCN for some supporting materials. “I am doing a presentation  in two weeks about metastatic breast cancer,” she told us. “It’s a pitch for big data projects. I’m also going to write an LA Times Op-Ed, primarily about the need to revise what breast cancer ‘awareness’ should mean today. I’d also LOVE to loop a copy of a video of the people in the audience being asked to stand, then sit down as the count of years alive goes up. do you have one? It really is one of the most compelling statements about MBC I’ve ever seen. Happy to credit MBCN.”

We responded that we didn’t have film of the audience, but sent her a link to the speaker’s portion.  (Ellen Moskowitz polls the crowd  at the 9 minute mark of this video.)

Laurie then offered some additional insights about her talk:

My main focus is that we need to restate ‘awareness.’ I mean, after 25 or 30 years? Would be nice. Under umbrella of what early stage (I was Stage1) cancer (all of us) needs to be aware of. Have you or anyone else posted anything that says here, these 3 or 4 points are most important? Have any of the organizations done that specifically? I’d love to be able to have a short, central message that includes questions that we all believe journalists should be asking for the NEW awareness. (Wish I had a better name.)

Another thing:

This is really about big data. I’m planning to stand up there and say (now that I’m at last out of the closet professionally) Use us. Use me or lose me. These big data people have so many conflicts, 30 different types of documents, inc in writing, competition among hospitals and companies for patents, etc, privacy issues, that I think it will be years before this really takes off.

It would be an organizing challenge, but i don’t think it would be hard to teach us and all those volunteer runners to do some data input on to a universal open source platform.

Things I’ve thought of:

— patients’ own record of side effects, including on specific drugs.

— putting in your own basic data as at doctors’ offices, including ER and PR but also FISH etc.genomic tests if done.

We sent Laurie the following:

13 Things Everyone Should Know About Metastatic Breast Cancer

Why Mets Matter PowerPoint (M Mayer, 2011)

What Have We Learned About Metastatic Breast Cancer (Patient’s Cheat Sheet to the Basics)

ASCO and Cancer and Big Data:

100 Stories About People Living With Metastatic Breast Cancer

Friends We Lost to MBC in 2013

Dumb Stuff People Say to People With Metastatic Breast Cancer

Two months after Laurie gave her talk, on October 13–National Metastatic Breast Cancer Awareness Day– the Metastatic Breast Cancer Alliance released the results of its Landscape Report, Changing the Landscape for People Living with Metastatic Breast Cancer. The Alliance, which represents 29 cancer organizations, conducted a comprehensive analysis of current MBC research and patient needs, as well as information and services. As we reviewed the executive summary, it seemed to us that Laurie Becklund could have written it:

In her Op-Ed, Laurie wrote: “We now know that breast cancer is not one disease. What works for one person might not for another: There is no one “cure.” We are each, in effect, one-person clinical trials. Yet the knowledge generated from those trials will die with us because there is no comprehensive database of metastatic breast cancer patients, their characteristics and what treatments did and didn’t help them.”

Laurie Becklund was a gifted and widely admired journalist. We can think of no finer tribute than for her journalism colleagues to continue Laurie’s crusade.

As Laurie said: Use us.


Guest Blog: The Conversation

February 21, 2015

angel 1Guest blog by Sherri Fillipo 2/12/15  http://www.sherrifillipo.com

If you were to ask me what is the most difficult thing I deal with, I would tell you it is letting me talk about death and dying – what I do and do not want to occur both on this side of life and what I want you to do when I am on the other. If you know me, you know that I couch a lot of things in the cloak of humor because as they say, “just a spoon full of sugar helps the medicine go down..” and it’s true.  In a very southern way when I say something to my mother and it creeps up on the edge of death, she will say, “if you don’t shut up, I am going to smack you.” Don’t be alarmed. That is a very  southern thing to say, no matter how old the child is. But it is her way of saying, “I can’t talk about that or I don’t want to talk about that or talk to someone else about that…” And I get it. I really do.

I was perusing through the New York Times this morning and came upon one of their “most emailed stories.” If you don’t read the NYT, every day they will list the top ten stories at the moment that readers are emailing to family and friends. The topics vary widely and I do get a kick of what is making the rounds. It could be anything from Obamacare to some strange recipe for artichokes. You never know. But one of the top stories today was about a woman who had recently died and the title of the article was Seeking a Beautiful Death by Jane Brody.

In it, the author quotes Dr. Angelo E. Volandes,  author of a new book, The Conversation. A lot like the book I have been quoting by Atul Gawande (Being Mortal) the author says as Americans we have access to the best medical care in the world yet we often die some of the worst deaths in the world. Why?  Because we do not  have the “conversation” that would outline what we do and do not want at the end of our lives. I am not talking about those of us with terminal illnesses. I mean, as do these authors, all of us whether young or old, sick or well.

The list of questions that Dr. Volandes made (and that Ms. Brody used in her article)  is so spot-on that I don’t need to add anything to it. The questions are vital for everyone to have answers to:

  • What gives your life meaning and joy?
  • What are your biggest fears and concerns?
  • What are you looking forward to?
  • What goals are most important to you now?
  • What trade-offs or sacrifices are you willing to make to achieve those goals?

Make sure that you, as the future patient, have answers to these questions AND that you have shared them with someone who will be making decisions on your behalf. Having this information locked inside your heart is going to do no one any good if you have not shared it with family or friends.

And all of this leads me back to my chemotherapy decision. I had my last PET scan a couple of weeks ago if you remember. And the liver spots had shown a decrease in activity. I was supposed to have been back to my oncologist  by now but had to reschedule my appointment. I am planning to see her today, Thursday, to discuss future treatment. I have decided I do not want to try either of the two chemos that she suggested to me when I had such a bad reaction to the Kadcyla. I am, however, going to accept a markedly reduced dosage and determine how I feel afterward. My family knows of this decision. I am not sure how they feel about it but they accept it and stand behind me while we see what happens. We all understand that they might not make the same decision, but they understand that it is the decision I need to make for me.


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

February 18, 2015
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 to read participants’ submissions and share some of them next week. When you’ve got two pages on your chosen topic, send them to SHARE’s Christine Benjamin: cbenjamin@sharecancersupport.org. Christine will send them on to Abigail.

It will be fun–why not try it?

Part Two is Tuesday, February 24, 2015, from 1:30 to 2:30 PM EST. If you haven’t done so, register here: http://www.sharecancersupport.org/share-new/learn/programs/write_your_own_memoir/

Hope you can join us!


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