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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109 US People (Women AND MEN ) Die Every Day from Metastatic Breast Cancer and Are Ignored; Orangutan Dies from Metastatic Breast Cancer and Makes News…

109 US people (women AND MEN ) die every day from metastatic breast cancer and are ignored; Orangutan dies from metastatic breast cancer and makes news

109perday

Per this article:

09/10/2014 | Salt Lake Tribune (Utah), The

Eli, a 24-year-old male orangutan at Utah’s Hogle Zoo, has died from metastatic breast cancer. He is one of three orangutans known to have had breast cancer and the only male. A tumor was removed after the cancer was diagnosed in 2011, but recent symptoms led to an exploratory surgery, and Eli died during the procedure. Preliminary data indicate the cancer had reached his liver and neck. “We were hoping to find something fixable,” said veterinarian Nancy Carpenter. “The staff worked tirelessly, but the mass in his neck was blocking his airway, and he succumbed.”

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When Did You Get Your First Mammogram? This is My Story…

You won't find this story in you October issue...

You won’t find this story in your October issue…but it will be online.

In its October 2014 issue, Better Homes & Gardens magazine will run a feature in which seven people responded to the question “When did you get your first mammogram?”

My story won’t be among them. will be online. [Kudos to the health editor for picking up the phone and calling me.]

The author, freelancer Camille Noe Pagan, told me my story was cut at the last minute due to space restrictions. Mammograms are generally not as effective as the average woman might suppose. And when it comes to breast cancer, there are 155,000 US people like me who are living with Stage IV breast cancer, the kind for which there is no cure.

This is not a story that fits in the well with the typical Breast Cancer Awareness Month uplifting narratives. (See Dr. Peter Bach’s excellent “Avoiding the Pink Warrior Trap” in New York magazine.)

My first mammogram was also my last mammogram. I am telling my story in the hopes it will educate people and inspire them to talk to their doctors about what would be most appropriate for them. Also, I want people to know about people like me—people who will always be in treatment for breast cancer and, in all likelihood, will ultimately succumb to the disease.

BH&G’s freelancer sent me the following questions and then boiled my written response down to 100 words, which hopefully will be online soon. But here are my original comments.

When did you get your first mammogram?

I got my first mammogram after the July 4th holiday weekend in 2009; I was 43 years old.

Why did you choose that particular time to get started? What did your doctor say, and did his/her advice sway you?

Things were clearly winding down at my publishing job.With my continued employment on shaky ground—as well as the attendant health benefits—I could no longer procrastinate about seeing my doctor.

All was going well with my general physical. But then the nurse practitioner felt a hard spot on my breast. She gave me a prescription for a diagnostic mammogram. I wasn’t too concerned—I felt fine and was tempted to ignore the nurse practitioner’s advice.

She wasn’t an alarmist, but she did stress it was important to follow up and get the mammogram, so I did. A diagnostic mammogram is different from a routine screening mammogram. Anyone who is told to get a diagnostic mammogram should most definitely do so!

What was the experience like? Any surprises? Things you wish you would have done differently?

The test itself wasn’t painful.

The surprise was finding out that day I definitely had breast cancer. (“This is NOT a cyst,” the radiologist told me. “You have to see a surgeon.”)

In preparation for a mastectomy, the surgeon ordered a round of imaging tests (PET/CT, MRI and bone scan). I then learned I had metastatic or Stage IV breast cancer. My breast cancer had already spread to my spine when it was found.

I will always be in treatment for breast cancer. To date, one treatment has failed; I had a slight progression. I moved on a second treatment and have done well on that for two years. I am fortunate—because of the characteristics of my breast cancer (ER/PR+ and HER2-, the most common type), I was able to start on the very lowest end of the toxic drug spectrum. Eventually I will have to have chemo (and again, I will always be in treatment) but hopefully that won’t be soon.

Had I to do things over, I would have been proactive about getting a mammogram at age 40—and possibly sooner if my doctor had recommended it. I have a family history—my mom died of metastatic breast cancer at age 53. I am also of Ashkenazi Jewish descent—people of eastern European Jewish heritage have a higher risk for breast and ovarian cancers.

What would you say to other women around your age who are talking to their doctor about getting a mammogram for the first time?

Do not use the current mammogram controversy as excuse not to have one if you know there is a compelling reason for you to have this test. In my case, I had a higher than average risk for breast cancer.

Know the limitations of mammography. Mammograms do not come with a money-back guarantee and unfortunately their effectiveness is often exaggerated or misunderstood.

Young people tend to have dense breast tissue which does not image well—it is like looking for grains of white rice in a blizzard. Not all breast cancer has a lump—lobular breast cancer grows in sheets, for example. And my mom’s cancer—inflammatory breast cancer, doesn’t have a lump either. The breast can be red or swollen or take on an orange-peel like texture.

Unfortunately early detection is not a breast cancer cure. In fact, most of the 155,000 U.S. people currently living with breast cancer were originally treated for early stage breast cancer—their cancer came back 5, 10, 15 and even 17 years later—even though they took excellent care of themselves and had regular mammograms. It is very unusual for someone to be like me– diagnosed with metastatic breast cancer from the very start—this only happens 10 percent of the time.

With all of this being said, it would be wrong to say that mammography doesn’t save lives. But as the American Cancer Society’s Otis Brawley says, we need to use it with caution, explain its limitations and realize that we need a better test.

Although the median age for breast cancer is 61, young people can and do get breast cancer. Most people know that not having children increases one risk—probably because of the unopposed flow of estrogen. Fewer people know, however, that a woman’s risk for breast cancer increases after giving birth—for about 10 years. We don’t know why this is the case—researchers theorize it has to do with hormonal spikes that happen during pregnancy.

Most women of childbearing age are below the recommended age for a mammogram. Therefore, they should pay close attention to their bodies—if they sense something is “off” they should it bring to their doctors’ attention. Women in their 20s, 30s and 40s can and do get breast cancer.

No one dies from early stage breast cancer—the lump in your breast will not kill you. When cancer spreads beyond the breast—to bone, liver, lung, brain or some combination therein, it can no longer be cured. Obviously, it is better to find breast cancer before it can spread. But there’s also the challenge of over treatment. We don’t know which cancers seen on a mammogram would go on to spread and which would never do anything. So everything that is seen on a mammogram must be treated.

As patient advocate Musa Mayer says: “If we had spent a fraction of the dollars devoted to promoting screening on research to determine which DCIS lesions and tiny invasive breast cancers actually need treatment beyond surgery, and which do not, we’d be way ahead now.”

My other message is to find a group that can help you deal with your specific diagnosis. Breastcancer.org, Inspire.com and Living Beyond Breast Cancer are examples of groups that offer online support—including discussion boards—that make it easy to connect with others in the same boat. The Metastatic Breast Cancer Network (www.mbcn.org) really helped me—I attended its annual conference shortly after my diagnosis—it was the first time I met other people living with incurable breast cancer—they inspired me. There are few resources for people with Stage IV breast cancer—people tend to be more familiar with early stage disease where you are in treatment for a fixed period of time. Very few people grasp that not everyone “beats” breast cancer.

I look forward to seeing Camille Noe Pagan’s October 2014 article on “My First Mammogram” in Better Homes & Gardens.

Better Homes & Gardens sells  7.6 million copies each month.  I wish my story could have been in print. I’m glad it will be online. I hope people will read it and come away with a  better understanding of a complex issue and will be better prepared to discuss what is most appropriate for them with their health professionals.

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Metastatic Breast Cancer Events 2014: Mark Your Calendar

katherinembc:

Hi all, I am fine-but busy! Please note the following MBC events in North Carolina, Philly, LA, Boston and Chicago. Hope to see you at some of them!

Originally posted on MBCNbuzz:

Hi everyone. We hope you are enjoying your summer. We wanted to share a quick overview of upcoming metastatic breast cancer events in Chapel Hill, NC; Philadelphia, Los Angeles, Boston and Chicago.  I will be at three (!) of these events and look forward to meeting some of you there. Is there a metastatic meeting in your city we should know about? Please comment below.

–Katherine O’Brien

Secretary, MBCN

NC_StateIconThe Metastatic Breast Cancer Network’s (MBCN’s) 2014 Annual Conference In Conjunction with UNC Lineberger Comprehensive Cancer Center

WHO: People living with metastatic breast cancer and their spouses, partners, friends and caregivers

WHEN: September 19-21, 2014

WHERE: UNC Lineberger Comprehensive Cancer Center, Chapel Hill, NC

                                                    MORE INFORMATION: www.MBCN.org

NOTES:  MBCN’s signature annual event starts with a Friday night reception and goes on to include a full day of  Saturday sessions and a half day on Sunday. There are at total…

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Metastatic Breast Cancer at ASCO 2014: We Are There

katherinembc:

#ASCO2014 can be overwhelming but it is wonderful to be here.

Originally posted on MBCNbuzz:

Follow ASCO live via TwitterShirley Mertz, Ginny Knackmuhs and I are am among the 25,000 attendees at the 2014 American Society of Clinical Oncology (ASCO) Annual Meeting this weekend at McCormick Place in Chicago. We are there as a patient advocates with the Metastatic Breast Cancer Network.

ASCO isn’t just about breast cancer. There are sessions on gastrointestinal cancer, genitourinary cancer, head and neck cancer, lung cancer, leukemia, lymphoma and myeloma, melanoma and more. If oncologists put together Lolapalooza, this is what it would look like.

Prior to attending ASCO, I never gave any thought to the group’s name. I thought it was something between a service-type organization (like the American Legion) or an elite group of super smart people (like the National Honor Society). But in learning more about ASCO’s 50-year history, I have come to appreciate just how important the “Clinical” part of its name is.  As the the ASCO Daily…

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Where’s my clinical trial?

katherinembc:

Ginny Knackmuhs is fortunate: she has been living with triple negative breast cancer for five years. She’s very glad her disease has been quiet–she’s happy to be stable. But why aren’t we learning from people like her?
“Isn’t it worth looking at patterns that might emerge from studying all of us at this stage of our disease? asks Ginny. “Why are we among the enviable few of patients living with metastatic disease? Not to collect our data seems like a lost opportunity, a cache of valuable information that should be captured.”

Originally posted on MBCNbuzz:

by Ginny Knackmuhs, VP of MBCN

I’m one of the lucky ones, I know.

Although I was diagnosed with metastatic triple negative breast cancer 5 years ago, I have been on the same treatment regimen since then. No progression, just blessed stability. I hesitate to write that sentence or say it out loud—afraid I’ll jinx my good fortune, always mindful of the next scan around the corner, when everything can change in an instant.

Metastatic breast cancer (MBC), also sometimes called advanced breast cancer or Stage IV disease, is incurable, but still treatable. Oncologists like to say it is a chronic disease, but with an average life expectancy of 2.5 to 3 years, it certainly isn’t chronic yet. Give us 10 or 20 years of stable treatment and quality of life and we’ll be happy to call it chronic.

ImageNext week I’m going to ASCO in Chicago, the annual meeting…

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Metastatic Breast Cancer Makes Mother’s Day Difficult

I just finished reading “The Day I Started Lying to Ruth: A Cancer Doctor on Losing His Wife to Cancer.”   The author, Peter Bach, is a physician, epidemiologist and writer at Memorial Sloan-Kettering Cancer Center where he is Director of the Center for Health Policy and Outcome. He is a gifted communicator and this is a compelling–if sad and sobering–essay.

 

PeterBach

I was shocked and dismayed to learn that Dr. Bach’s wife, Ruth, died in January 2012 from metastatic breast cancer. She was 46.

I recalled the Bachs from a 2011 series of blog posts in the New York Times. The seven-part series started with “When the Doctor’s Wife Has Cancer” in February 2011 and concluded with April 2011’s “Back to Work and Life With a Fresh Perpective.”  In the April 2011 installment, all seemed well–Ruth’s hair had grown back following the conclusion of her chemo. The piece ends with the couple enjoying a gorgeous day at the beach with their son, a happy ending to what had been a frightening chapter in their lives.

So how could this woman possibly have died a mere nine months later?  Bach did not assign a time frame to his New York Times 2011 series–as many readers probably did, I assumed Bach was writing about events in real time, but that wasn’t the case. In his most recent article, we learn that Ruth was first diagnosed with breast cancer in 2008.  So the New York Time series actually described events from three years prior.

Still, even with this timeline clarification, the news is no less incomprehensible. In June 2011, just a few a months after the publication of the NYT series–and three years from her first diagnosis–the Bachs learned Ruth had a metastatic recurrence. She died eight months later in January 2012.

Bach’s thoughtful NYT series included this March 2011 reflection on the risk of breast cancer recurrence. A mere three months after that story was printed, he and Ruth learned her cancer was back (after three years), and this time it was incurable.

How awful for all concerned.

When I read Dr. Bach’s account of his wife’s experience with metastatic breast cancer, I felt a familiar blend of emotions: sympathy for Bach and his young son, anger that yet another young life was lost  and despair that even people as smart and well-connected as the Bachs were powerless against this insidious disease.

Mother’s Day is this Sunday, May 11, 2014. It will be hard day for the Bach family as well as the families of  some of their fellow Memorial Sloan-Kettering patients who lost  young mothers to metastatic breast cancer, including two who shared their diagnosis online and in print:

Meredith Israel, mother of a five-year-old died on December 23, 2012 at age 39.

Elisa Bond, also 39,  died on March 26. 2014, a few weeks prior to her daughter’s fourth birthday.

The following women were not MSKC patients and not all of them were mothers. But  they were all too young:

Lisa Lynch was 33.

Olga Simkin was 34.

Maria Madden was 37.

Jennifer Lynne Strutzel Berg was 37.

Susan Niebur was 39.

Beth Bell was 40.

Samantha Pritchett was 40.

Dana Robinson was 41.

Rachel Cheetham Moro was 42.

Zoh Vivian Murphy was 45.

Barbra Watson-Riley was 45.

Acacia Warwick was 46

Suzanne Hebert was 47.

Mary J. Corey was 49.

Shelli Gibbons was 49

Martha Rall was 49.

 

“We need focused research to change incurable metastatic breast cancer into a treatable, chronic condition like HIV-AIDS–where patients can now live for 20-30 years with treatment after their diagnosis,” says Shirley Mertz, President of MBCN. “If gay men, who were then scorned by society in the 1980s, could demand and receive focused research and treatments for their disease, why can’t we women–who are wives, mothers, daughters, sisters and grandmothers AND over half of the population–receive similar research that will find strategies to keep us alive for 20-30 years?

“Are we not worthy of this effort?  Are we ignored because we quietly live with our disease?”

Well, are we?

 

 

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Canadians Push for National Metastatic Breast Cancer Day Designation

katherinembc:

Kudos to patient advocate Laurie Kingston and our friends at the Canadian Breast Cancer Network!

Originally posted on MBCNbuzz:

LaurieKingston

We want to salute Laurie Kinsgston, a Canadian metastatic breast cancer patient advocate and author, for her work with  the Canadian Breast Cancer Network. On May 1, 2014,  Laurie and representatives from the Canadian Breast Cancer Network joined Liberal MP Hedy Fry to call attention to her private members’ bill to designate October 13th as National Metastatic Breast Cancer Day.

Laurie, who lives in Ottawa, learned  was first diagnosed in  breast cancer in 2006, when she was 38 years old, with two little kids. Three months after she completed treatment, she learned the cancer had spread to her liver. Treatment went well–seven months later, her  scans revealed no evidence of disease.  But in November 2012, she was diagnosed with brain mets.

“After conventional and cyber knife surgeries, I was once again able to embrace the words ‘no evidence of disease,'” she writes. “I will be in treatment for…

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