Get [empowered] with us. (Part 2)

If you’re familiar with LBBC, you know we often speak of “a small group of women” who helped establish the organization with the help of their radiation oncologist, Marisa Weiss, MD.  Margaux Jacks’s mother, Nancy Garbowski, was one of that small group.  This is the second of a two-part blog. We posted part one earlier this week.

In the early ‘90s, my Mom, Nancy, was receiving treatment at Paoli Memorial Hospital under the care of Marisa Weiss, MD, who recognized there was a lack of support for her patients. So Dr. Weiss organized a conference, which my Mom participated in. Their goal of the conference was to provide a safe space where women could get accurate and easy-to-understand breast cancer information from medical experts, while finding and connecting with each other. She wanted people to be able to talk about the disease, and to not feel as though it was some ugly thing that needed to be kept secret. This disease involves people’s lives — loved ones, parents, siblings, etc. And there is a ripple effect that cancer has, as all those involved with that person’s life have to process and deal with the weight of such a diagnosis.

The connections my Mom made with other cancer survivors fueled her drive to survive. She learned about new treatments, testing, and techniques for battling the disease. Mind you, this was before the Internet, when you could goggle about treatment options and medications. She had a sense of power, as she took control of her illness. She was making the decisions, not cancer.

And there was support. Support from others who knew exactly how she felt. Who knew the fear of facing the idea that cancer may end their lives. She had friends she could call — this was before cell phones — and ask about wigs and prosthetics. They would help each other delivering meals when someone was home from surgery. They made pretty head wraps so they could still feel beautiful. It became a family.

“One of the things my mom was most proud of was being part of the group that organized LBBC 25 years ago.”

One of the things my Mom was most proud of was being part of the group that organized LBBC 25 years ago. My Mom would be so proud to see how much LBBC has evolved, how it is impacting so many lives and making them better. She always spoke of maintaining quality of life. And that is something LBBC helps provide. Every time I see an update, or a new event, I know my Mom would be smiling. She would be thrilled to see how far this organization has come. This organization lives on.

And for me, her daughter, it is a way I can remember her strength, perseverance, and jacks-family-21passion for life. What a gift, as I reflect on her life during this year, the 20th since her passing. It is something that she helped laid the groundwork for that is continuing to flourish today. I remain a part of this organization because I believe in the mission. And I know all too well, that no one should ever be alone when dealing with something as immense as facing cancer.

Thank you, Living Beyond Breast Cancer!


25th Anniversary Mark

As this blog was being coordinated, little did we know that its scheduling would place part two smack dab on what would have been Nancy’s birthday.  It’s fitting though, and a wonderful way to honor her memory.  If you’re reading this and knew Nancy, or any of the original group of ladies who helped create what would become LBBC, Margaux would love to hear from you. Send a note to mail@lbbc.org and we’ll be happy to forward it along.

If you have a special story to share about your history with LBBC that you feel might be appropriate for our 25th Anniversary Blog Series, contact Kevin Gianotto at kevin@lbbc.org.

 

Get [empowered] with us. (Part 1)

In 1991, Living Beyond Breast Cancer was formed when Marisa C. Weiss, MD, a radiation oncologist, held a conference with the help of some of her patients. Their goal was to provide a safe space where women could gain accurate and easy-to-understand breast cancer information from medical experts, while finding and connecting with each other.

Margaux Jacks (nee Garbowski) is the daughter of one of those patients.  This is the first of her two-part story for the Living Beyond Breast Cancer 25th Anniversary Blog Series.

 

mom-dad-meIt was 1980, and I was four when my parents sat me down at our kitchen table in our ranch home in the suburbs of Philadelphia to have a talk. While I can’t recall everything that was said, one detail that would impact my life in ways I could never imagine at such a young age was when my parents brought up the “c word.” In that moment, my life changed in a profound way. Ahead of me would be a mix of highs and lows, so many sweet moments, and yet so many other terrifying ones. Whether we liked it or not, we were in for the roller coaster ride that is a cancer diagnosis.

At the age of four, I didn’t ask about my Mom, Nancy S. Garbowski, living or dying. And I was unaware that Mom could die. I knew she was going to the hospital, and hospitals made people better, right? She would be ok, the doctors would fix her, that’s what doctors do. I drew her a card to take to the hospital, on construction paper, with pretty flowers and signed it with love.

I can’t imagine what was going through my Mom’s mind. She always seemed so calm about it with me. She must have been so scared, as her Mom had died of metastatic breast cancer when she was four; her Mom was just the young age of 31. Was history going to repeat itself?

mom and meWhen she came home, I saw her scar from the amputation. In my little voice, I called it the train tracks. It was one long red line about one-half to one-inch thick in sections that went from the center of her chest all the way into her armpit. It had equally thick cross lines, same red that gave it the train track look. She smiled at my observation. I’m guessing she enjoyed my innocence.

Mom healed and life went on. She didn’t talk about cancer with me. When the next one came, I was a few years older, and understood more. When Mom was not feeling well, we would hunker down as a family — helping each other with all the routine chores of life, while making sure Mom was as comfortable as possible. While Mom, Dad and I bonded in such a profound way, there were also consequences, as it was stressful to be the main support for someone. Plus, I could not relate to how she was feeling. I could not provide any support in the huge decisions she faced with her treatment. My Dad shouldered a lot when it came to being there for my Mom.

We handled it together as a family. Her cancer allowed us an opportunity to share many intimate experiences, many girls would not share with their Mom at that age. During chemo I would help her walk outside and together we would blow clumps of her hair into the wind. As the locks of her hair would carry through the air, we would make a wish. I can recall the twinkle in her eyes. She was so proud to have given me life, even as hers was ending.

I held the family secret for years. I never told anyone, not a friend, not a neighbor. Finally, one day sitting with one of my best friends playing cards in our cabin at sleep away camp, I said it: “My Mom has cancer.” It felt so weird to utter the words — to see her reaction, her understanding of the seriousness of something like this. And that was it. I didn’t speak of it again for quite some time. It felt awkward to reveal something that was deeply private.

My Mom kept it mostly private too. I’m not sure how she processed all that she was enduring. But then she met someone who would help her in ways none of us imagined.


25th Anniversary Mark

Nancy didn’t know it, but she and a small group of fellow patients were about to help in the creation of something that would forever change the way women diagnosed with breast cancer could access trustable information and connect with a community they could depend on. Margaux’s story concludes with the second part of her blog which will be published later this week.

Hear My Voice: Getting the Support You Need as a Young Mom With Metastatic Breast Cancer

photo-1terri

Update 10/7/15: Terri da Silva passed away in December 2014. Below is her insightful contribution to our blog carnival, Hear My Voice.

Young mothers living with metastatic breast cancer face unique hurdles and uncertainty. Terri da Silva provides insight on these issues and shares resources and tips for supporting your family while living with this diagnosis. 

Living with breast cancer is tough. It’s especially difficult when you’re a young woman trying to navigate your way through adulthood, building a career, starting a family, and then you find out you have metastatic breast cancer. The kind that rarely goes away. The kind that requires lifelong treatment. The kind that is terminal.

I was diagnosed with metastatic breast cancer in 2011 at the age of 37 when my daughter was only 2 years old. I had no previous breast cancer scares. No family history. I was otherwise healthy. Suddenly my life was flipped upside down.

Young moms with metastatic breast cancer face a unique set of hurdles. Unlike most breast cancer patients whose treatment has a prescribed end date, those of us with stage IV metastatic disease live our lives going from one treatment to the next. Praying the treatments will slow down or stop the progression of our disease long enough so we can see our kids learn how to ride a bike, go on their first date, graduate from school. Praying the side effects from our treatment won’t cause us to miss soccer games and parent-teacher nights. Praying our loved ones won’t tire of supporting us year after year after year. Praying for the strength to make the most of each day we are still here. Continue reading

Our New Vision and Mission

2012JeanSachsHeadshotVer2Web

This morning, Living Beyond Breast Cancer’s CEO Jean Sachs released the following message to our friends and supporters:

Dear Friends:

All of us at Living Beyond Breast Cancer are excited to share our new vision and mission statements with you:

Our new vision

A world where no one impacted by breast cancer feels uninformed or alone.

Our new mission

To connect people with trusted breast cancer information and a community of support.

These new statements were developed with the help of over 1,200 of you who responded to a survey we sent out earlier this year. Your input was used in a day-long retreat with members of the board of directors and staff. We learned what LBBC services are valued most and why so many have come to depend on our educational programs and services that allow for connection to others diagnosed with breast cancer.

For me, these new statements say with clarity what we strive to do every day and what we hope to achieve over time. Yesterday, I spoke with a long-time friend who had just been diagnosed with breast cancer.  She was overwhelmed, scared and shocked. Our conversation and the resources I was able to put in her hands grounded her and provided her with enough comfort and confidence to take the next step.

This is what LBBC does every day, and it is exactly what the new vision and mission statements express.

I hope you share my enthusiasm and, as always, if you have comments I would love to hear from you.

Warmly,

Jean 

Jean A. Sachs, MSS, MLSP

Chief Executive Officer

LBBC

Blessings In Disguise

LBBC would like to introduce multi-award-winning author Helen Brown as our newest blog contributor! Helen has written two novels since her breast cancer diagnosis and her latest, ‘Cats & Daughters’, will be reviewed by a regular LBBC blog contributor in the coming weeks so stop by soon for what we’re sure will be an excellent review!

Helen Brown-photo credit James Braund - SM

The best part of my life began with breast cancer.

I wouldn’t have believed that nearly five years ago when I had the mastectomy. But looking back I can honestly say the years since that traumatic event have brought more happiness and success than any other period of my adult life.

I was part way through writing my memoir Cleo when a routine mammogram revealed a large growth.

When the doctor diagnosed ductal cancer I told her I was too busy to be sick. I was writing a book about our black cat Cleo and how she’d helped our family recover from the loss of our nine year-old son in 1983.

Cleo had died a couple of years earlier at the age of 23 and a half. I wanted to honor her and give hope to other parents who’d lost children. Even though I couldn’t find a publisher and agents scattered on approach, this book needed writing.

While I was recovering after surgery, I crept back to the computer and completed the manuscript. Then to my delight, an Australian publisher sent a contract.

When an editor sent 15 pages of suggested changes, my heart sank. Still, cancer wasn’t far from my mind. If this was to be my last book it had to be my best.

I was astonished when Cleo was published in the US and became a New York Times best seller. It’s now published in more than 16 languages and a movie’s in development. I still sometimes have to pinch myself.

With Cleo’s success I received countless emails asking for a sequel. As it turned out there was plenty more to write about for my new book, Cats and Daughters.

Not long after the mastectomy, a rambunctious Siamese burst in on our lives. Galloping through the house, smashing vases, shredding the stair carpet, he drove me nuts. Jonah also made me laugh till my stitches hurt.

Our new cat’s rebellious spirit was mirrored in our elder daughter, Lydia. At the age of 23, after a brilliant academic career, she rejected Western society – and, I thought, her mother. To my horror, she shaved her head and flew to war-torn Sri Lanka to become a Buddhist nun.

It took a while to realize Lydia hadn’t abandoned me. She was simply redefining our relationship, insisting I pull back and allow her freedom. These days we’re very close.

Likewise, it wasn’t till I learned to relax about some of Jonah’s outrageous behavior that life with him became easier.

At an age I thought I’d be tending roses I’m traveling the world meeting publishers, readers and media. Emails roll in from Russia, Italy, Brazil.

If it hadn’t been for breast cancer and the determination it brought to make the most of life I doubt any of this would’ve happened.

Breast cancer made me take risks. I stopped putting things off and stretched my abilities to the limit.

With a good prognosis now, I savor beauty in every moment, open my heart to strangers and never leave a loving thought unsaid.

For these reasons I’m deeply grateful.

***

Helen Brown was born and brought up in New Zealand, where she first worked as a journalist, TV presenter, and scriptwriter. A multi-award-winning columnist, Helen now lives in Melbourne, Australia, with her family and feline. Cleo, her first novel, rose to the top of the bestseller lists in its first weeks in the United States, United Kingdom, New Zealand, France, and Australia, and has been translated into more than sixteen languages. It is currently being made into a major motion picture by South Pacific Pictures (the makers of Whale Rider). Her new memoir, CATS & DAUGHTERS, came out on March 26, 2013. 

Visit Helen Brown online at www.helenbrown.com.

Cats & Daughters

What, Me…Cancer??

On Tuesday we introduced first time contributor Sandi Dennis to the Living Beyond Breast Cancer Blog.  Sandi is a long time supporter of LBBC who grew up in Philly and attended Philadelphia High School for Girls (where she is looking forward to her 40th reunion in 2014!). She majored in journalism at Penn State and worked as a TV news reporter in Columbia, South Carolina, prior to attending University of South Carolina Law School. Today she practices FDA/healthcare law, and policy, including work for companies and nonprofits in oncology and patient advocacy.  She lives in Washington, DC, with her husband, daughter and a dog named Lulu. Here is part two of her story.

SandyDennis

On that day of the LBBC Yoga on the Steps Fundraiser in DC,  my sneaky triple negative breast cancer in fact was not gone, only as yet undetected.  And that 95% chance of non-recurrence? Well, somebody has to be in that 5%.  So much for my faith in statistics.   In early November 2012, a trip to the dentist and a routine x-ray showed something odd. “You don’t have a history of breast cancer, do you? I had a patient with breast cancer that metastasized to her jaw . .  .”  Well, my jaw dropped open, and then clenched through a roller coaster week of scans of my head, bones and brain (all normal), and a full body pet scan that showed metastases of my breast cancer to four sites—all soft tissue/lymph nodes.  In the world of Stage IV disease, I am very very early . .   . my cancer is virtually in its infancy. And I have every intention of keeping it there.  I am stunting your growth, you little b . .  .d!!

Wrong assumption # 5: stage IV is a death sentence.  I did not know that stage IV could be livable.  I truly thought that—except in rare instances—stage IV patients were down for the count.  I now understand that with current treatment I am likely to live for 20ish years (at which point I’ll be 75, which sounds way far away to me), and with treatment advances that are likely to emerge in the next decade, I’ll likely live longer than that–maybe even to my original target age of 90. (For some reason at age 45, I decided that 90 was a good ending point.)

I have just completed five rounds of chemotherapy, and am nearing the end of treatment.  The chemo was actually less fatiguing and I experienced fewer side effects this time.   I kept my hair, which shallow but true, makes me feel good about myself.  And I really, really don’t look sick at all, unless one notices my port.  I do suddenly have lymphedema in my right arm, a side effect of having fewer/less functional lymph nodes—even though those lymph nodes were removed surgically almost three years ago.  It’s always something.  But most importantly, the chemo is working! After three rounds, a scan showed that all four cancer sites had decreased in size by about 50%.  These numbers I can handle.  Hallelujah!  Thank you higher powers, and thank you drug developers, doctors, nurses, and everyone else that played a role in this.  Cancer, you’re going down.

Granted, I don’t always feel or act so tough.  Having a lifelong chronic disease is a life change that I haven’t quite wrapped my arms around yet. How exactly does one move on with life, and yet live from scan to scan? I feel like my cancer is a stalker that we may have driven away for awhile, but that is lingering nearby and can move back in at anytime.  My lifelong goal will be to keep him away from the good body parts.

In the meantime, I will continue to do the work I feel passionate about; work out, practice yoga, learn to meditate; be a loving mother, wife, sister, aunt, and friend; get pedicures, and buy rockin’ shoes.  Albeit, I will do all of these things as a cancer patient.  It’s not what I wanted or planned on, but it’s what I’ve got. And we don’t always get to choose.

You can continue to follow Sandi’s story by visiting her own blog, Cancer Diva 4 Ever and be sure to visit the LBBC blog for future posts by Sandi!

As we mentioned on Tuesday, LBBC will host its Annual Conference for Women Living with Metastatic Breast Cancer  Saturday, April 13 and Sunday, April 14 at the Loews Philadelphia Hotel.  The conference is designed to address the complex medical, social and emotional challenges that women diagnosed with metastatic disease, their families and their caregivers experience. To learn more about the conference visit lbbc.org.  In addition, on April 17, LBBC and the Triple Negative Breast Cancer Foundation will conduct a free webinar at 12:00 p.m. EST.  Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine.  During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you.  In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.

What, Me . . . .Cancer??

Today, we welcome first time contributor Sandi Dennis to the Living Beyond Breast Cancer Blog.  Sandi is a long time supporter of LBBC who grew up in Philly and attended Philadelphia High School for Girls (where she is looking forward to her 40th reunion in 2014!). She majored in journalism at Penn State and worked as a TV news reporter in Columbia, South Carolina, prior to attending University of South Carolina Law School. Today she practices FDA/healthcare law, and policy, including work for companies and nonprofits in oncology and patient advocacy.  She lives in Washington, DC, with her husband, daughter and a dog named Lulu.  

 

SandyDennis

I know far more about breast cancer than I ever thought I would.  In almost three years, I have gone from knowing a bit more than the average bear (as a healthcare lawyer I have worked with biopharmaceutical companies on treatment advances), to knowing a respectable amount.  And since breast cancer has now become part of my forever, I think I’m heading towards PhD status. Much of what I have learned has altered some of my basic assumptions: of who will be a breast cancer patient (not me, of course), what treatment is involved, what chemotherapy is like, and who will have a recurrence/metastatic disease (again, of course, not me!).

I was wrong on all counts.

First, I couldn’t count on lack of family history, my generally healthy lifestyle and overall excellent health, or regular mammograms and exams.  Cancer thumbed its nose at all of that. In April 2010–while trying to print out my boarding pass for a trip to Mexico and a week of intensive yoga, hiking, and vegetarian meals—I felt a lump just above my right breast.  I was not doing a self-breast exam; I think I was scratching under my arm.  If my Internet connection had been faster, I likely would not have found it.

Second, once I swallowed the “you have breast cancer” news (and bought a fabulous pair of retro-vintage high heeled mary janes in ecru lace with black leather trim), I thought I was just meeting with my surgeon to schedule a surgery date.

photo

(said mary janes)

I went alone, planned to drive to my office afterwards, hopefully in time for a late-morning meeting.  What was the big deal? Just a lumpectomy, I thought, maybe an estrogen-lowering drug . . .  but no, a diagnosis I’d never heard of: “triple negative . .   chemotherapy . .  you will lose your beautiful hair . . . “  I could not swallow those words.  The shoes did not help.  I called my two best friends who came to get me and my car, and stayed with me until my husband could get home.  He proceeded to refinance our mortgage at a lower rate.  I have no recollection of what I did for the rest of that day.

Third, I assumed chemo patients were pale, thin, and sickly, and expected to have my head in the toilet for days. Here, the reality was better than my assumptions. While chemo is no day at the beach, it can be livable and tolerable.  I worked, continued my workouts and yoga, and never felt nauseous, thanks to the advances in treatment of chemo side effects.  I got pedicures, which I once would’ve thought were verboten for chemo patients. I actually gained a bit of weight from steroids, and I never really looked sick, unless someone caught a glimpse of me without one of my wigs on (which did occur in yoga—95 degrees and sweat are not good for wigs!)

Fourth, once I got through surgery, chemo, and radiation, my “beautiful” hair grew back, and I became less fatigued (although fatigue never completely went away), I thought I was home free.  My chance of recurrence was decreasing every year, and at this point was only about 5%.  On October 14, 2012–exactly 2 1/2 years out AND my 56 1/2 year birthday– I proudly participated in LBBC’s Yoga on the Steps fundraiser in DC,  and was the top individual fundraiser.  (Yay me, and yay, my generous, thoughtful friends and family!) I was called up to the stage and given the microphone & announced that I was cancer-free, exactly halfway through my five year milestone. Yay me, yay science and medicine, yay life!

Wrong again, Mary Lou.

You’ll find the second half of Sandi’s first LBBC blog story on Thursday.  In the meantime, you can learn more about Sandi by visiting her own blog, Cancer Diva 4 Ever.

LBBC will host its Annual Conference for Women Living with Metastatic Breast Cancer  Saturday, April 13 and Sunday, April 14 at the Loews Philadelphia Hotel.  The conference is designed to address the complex medical, social and emotional challenges that women diagnosed with metastatic disease, their families and their caregivers experience. To learn more about the conference visit lbbc.org.  In addition, on April 17, LBBC and the Triple Negative Breast Cancer Foundation will conduct a free webinar at 12:00 p.m. EST.  Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine.  During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you.  In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.