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.

Get [talking] with us. (Part 2)

This is the second of a two-part blog written by Living Beyond Breast Cancer supporter, Mark Plamondon. Mark’s story is one of many LBBC will be sharing with you in 2016 as we recognize 25 years of service to those impacted by breast cancer. Mark told the first part of his story earlier this week.

Lee’s breast cancer was back. It had metastasized to her bones, liver and brain. We were faced with both the knowledge of how she would in all probability die and the statistics to determine how long we had left together.  The luxury we had when first married and starting our family of measuring time in months and years had been replaced by increments of weeks and days. No matter how hard I tried, it was impossible to stop the voice in my head that kept asking “when.” Treatments began and ended.  We had good days.  We had bad days. We laughed and we cried. We felt connected.  We sometimes felt alone.


Remember, this was during the mid-90s. People whose lives were being changed by life-threatening illnesses didn’t have access to the many resources we have today. People had to create them or as in our case, find them through circumstance and luck.  We learned about Living Beyond Breast Cancer from Lee’s radiation oncologist, Marisa Weiss. Marisa had started LBBC just a few years before for women to connect with each other to find information and to get support.

“It’s strange.  So much of that time is committed to memory for me, as clear as snapshots in an album. Yet, I can’t recall any one particular moment or conversation Lee and I had that cemented our commitment to Living Beyond Breast Cancer.”

It’s strange.  So much of that time is committed to memory for me, as clear as snapshots in an album. Yet, I can’t recall any one particular moment or conversation Lee and I had that cemented our commitment to Living Beyond Breast Cancer.  If I had to guess, I’d say it just happened over a period of time. We came to depend on LBBC, for the support we received and equally important for the support we were able to give. As I mentioned earlier, Lee was a great communicator. There are lots of good communicators out there, people who make answers to questions about complex issues and concepts easier to understand. But there are far fewer who actually take the time to listen to the question first. That was Lee. So it’s easy to understand why she found herself drawn to an LBBC resource that continues to this day.

In 1997 the Survivors’ Helpline launched nationally, but back then it was a local phone line. It was staffed, a few hours a week, by volunteer women diagnosed with breast cancer for women diagnosed with breast cancer. It was a place where callers could find someone else similar in age or stage of diagnosis.  It gave women the chance to learn they weren’t alone and that what they were feeling was valid and real and important.  That it was OK to talk about it.  To communicate.  As a volunteer, Lee found a purpose in helping others. It gave her the chance to use cancer instead of it using her.  It helped her assign meaning to it. I supported her and the passion she had for the service because it was contagious. She advocated for it, pushed it, helped grow it. She remained passionately committed to it until the day she passed away.


Less than a year after she was gone, I got a call from LBBC’s executive director Jean Sachs.  A young man, who’d just lost his own wife to breast cancer, had called the Survivors’ Helpline.  He was distraught, mourning a loss he was unable to accept or understand. I was asked to call him.  I agreed.

When I did, we began our conversation learning more about each other. He was younger than me.  Not a huge difference but enough that we were at different places in our lives. He was without children and I had two young boys. Grief was an emotion we both were dealing with, but in very different ways. Yet we immediately felt a camaraderie. Regardless of our differences, we were connected by something that was both horrible and profound and it made me appreciate even more Lee’s passion to communicate with someone who shared an experience that had changed their lives in an unimaginable way. I’d been asked to make a call to help a stranger in need.  But somehow, it was helping me.  It felt RIGHT.

My relationship with LBBC has only grown stronger since then. I served on the Board for 10 years.  I’ve worked on numerous projects where my marketing experience was put to use, including expanding the Survivors’ Helpline and establishing it as a core LBBC program. It’s been amazing watching LBBC grow from a local organization helping those in the greater Philadelphia metro to a major player in the nonprofit arena, that helped over 500,000 people in need last year alone.  The Survivors’ Helpline is now called the Breast Cancer Helpline. This toll-free service receives thousands of calls every year from people across the country and even offers the option to chat online if it’s preferred.  People attend LBBC conferences from every state and even other countries.  Yet the more things change, the more they remain the same.  LBBC constantly exceeds expectations.  Each and every member of the staff is an embodiment of the LBBC mission and their desire to connect those in need to trusted information and a community of support is a passion that spills over into everything they do. They are committed, they want to help and they are great at it.

Before I sign off, I’d like to leave you with this.  What I’ve shared with you just happens to be the way Lee and I attempted to cope with the hand we were dealt. It’s just one story, one to include with millions and millions of others. But it was our story and now it’s my story and for that reason I hold it close.

Being diagnosed with breast cancer is tough. Caring for someone with breast cancer is tough. There isn’t a right way to deal with it or a wrong way.  How a person copes can differ in ways really big and really small. It’s important that I recognize that you must find a way through it that works best for you and you do the same for me. I would never suggest there’s one way that’s better than another.

But, I will say this. Talking about what’s happening in your life with someone is better than not talking. The Breast Cancer Helpline is staffed by people who can provide advice, and insight and hope. Callers aren’t only women with breast cancer. Diagnosed men have used the service, too.  So have caregivers, friends, lovers and spouses.  People just like you, who given the chance can share whatever is on their mind with someone who completely gets it.

You don’t have to go through this alone. There are people who can help if you take the first step.  Call the Breast Cancer Helpline.  They helped Lee.  They helped me.  I’m confident they can help you, too.  They may even be able to make things a little more RIGHT in your life.

Exclamation point.

25th Anniversary Mark

The Breast Cancer Helpline is a service provided by LBBC. Helpline calls are answered live Monday – Friday from 9 a.m. to 9 p.m. ET. At all other times, just leave a message; calls are returned within 24 hours and often much sooner. Online chat is also available. Both are free and confidential.

If you have an LBBC story you would like to share as part of our 25th Anniversary Blog Series, contact Kevin Gianotto by emailing

Get [talking] with us. [Part 1]

In 2016, Living Beyond Breast Cancer is recognizing 25 years of service to those impacted by breast cancer. Throughout the year, we’ll be featuring not only the stories of the women and men who have turned to LBBC for help, but also the stories of individuals whose commitment to the work we do have made an indelible impact on furthering our mission of connecting people to trusted information and a community of support. 

Mark Plamondon is one of those people.

You know that feeling you get when things in your life are RIGHT?  Not the kind of right when you answer a question correctly or still make it to work on time even though traffic was horrible. I’m talking about the kind of right when life is RIGHT.  All caps.  Maybe an exclamation point, too, for emphasis.  If you’re like me, you’ve probably come to find out that the times RIGHT happens are few and far between.  But they do happen.  For me, one of them was my wife, Lee.  When I was with Lee, things were RIGHT. Exclamation point.

We met while working at the same advertising agency, where we were introduced to each other through a mutual friend.  Lee was fun and smart, had a great laugh and was a fantastic communicator.


“Lee was fun and smart, had a great laugh and was a fantastic communicator.”

She could talk to anyone about anything all while making them feel like they were the only person in the room with her.  It made her great at what she did professionally.  More importantly, it made her great to be around personally. People gravitated to her, myself included. Amazingly, the courage needed to ask her out on a date returned later when I asked her to marry me.  Lucky for me she said “yes.” Both times. And off we went.

In 1994, Lee was nursing our second son when she noticed something that made her uneasy. A visit to her doctor led to a series of tests which led to the news she had breast cancer.

My 34-year-old wife, the mother of my two young boys, had been diagnosed with early-stage breast cancer.

We were told Lee’s best option, at the time, was chemotherapy. So that’s what we did.  We hoped for the best, of course. She was young and healthy but for the breast cancer. Which tests indicated was early-stage. So, you can imagine our shock two years later when it was discovered that the cancer in Lee’s breast had metastasized.  To her bones. And liver. And brain.

My 36-year-old wife, the mother of my two young boys, had been diagnosed with stage IV breast cancer.

Earlier, I shared with you that Lee was a communicator. What made her so amazing at it professionally (her marketing jobs) and personally (everything else) was an understanding of its power.  She was amazed, even dumbfounded at the lack of anything she found to be of value to help her make sense of her diagnosis and what she could expect.  And then she found Living Beyond Breast Cancer.


25th Anniversary Mark

Be sure to to read the second part of Mark’s blog to learn how Lee used the power of communicating to help establish a core LBBC program and inspire Mark to use his experience to help LBBC grow in ways neither of them expected.

If you missed it, here’s the first blog in this series: Get […..] With Us: Celebrating 25 Years of Living Beyond Breast Cancer by LBBC CEO   Jean Sachs, MSS, MLSP

My Mom Was Diagnosed with Breast Cancer: A Teen’s Perspective

“Your mom has breast cancer.” It’s never easy to hear that sentence, especially for young kids. Jordan Vespoli reflects on hearing those words at age 9, how he supported his family and  now, at age 16, helps other kids who learn their mom has a breast cancer diagnosis.

Jordan and his mom_blog

On October 30, 2008, my mom and dad sat me down on my bed to give me some news. I couldn’t imagine what they were going to say to me, but I knew it was serious.  My mom had breast cancer. Cancer? What is that? I was pretty smart for a 9-year-old kid. I knew it had something to do with bad cells in your body and I knew that it was life threatening. I sat and listened.  When they asked me if I had any question, I said nothing. I did not know what to say.

So when they left my room, I sat there motionless and deep in thought.  I went through my days as I usually did, which was going to school, playing basketball and doing my homework. Inside, I felt scared and angry. I did not know anyone whose mom had ever had breast cancer.

After some time, I decided that the best way to deal with this situation was to help my family out in any way I could. I helped set up a schedule for our friends to prepare dinner for us while my mom was going through chemo. I also started speaking to my friends about it, but none of them went through the same thing I was going through. Continue reading

My Caregiver, My Friend, My Sister

November is National Family Caregivers Month, and we’re marking it with a special blog post by Lynn Folkman, our community engagement manager. Lynn writes about her sister, Deb, who offered tremendous love and support to Lynn throughout her experience with breast cancer.

Deb and LynnMy sister and I were standing near the finish line for the Philadelphia Marathon this past weekend. We were eagerly waiting to catch a glimpse of my nephew and his fiancé so we could cheer and support them as they ran. While waiting to see them pass by, I enthusiastically cheered and clapped for all those running the marathon. I was overwhelmed at the number of all of those present showing support to those they love. With my sister by my side, I thought that she should be cheered for in the same manner as my caregiver.

Let me start by saying, I love my sister Deb. She is quite reserved and is one who does not like being in the spotlight. She has one of the biggest hearts and is one of the most giving and caring individuals I know. I have thanked her many times in a variety of ways to acknowledge her support during my breast cancer diagnosis and treatment; yet, I don’t think she fully understands the enormous positive impact that her caregiving had on my healing.

My sister and I were always close. During the time we shared as co-caregivers for my mom, who had laryngeal cancer, our bond became that much stronger.  Two months after my mother passed away, I had my annual mammogram. Two weeks after the results of my normal mammogram, I had a pain underneath my arm. Although my sister is no longer a practicing nurse, I asked her opinion. She encouraged me to go to the doctor for more information. The initial doctors visit led me first to an x-ray and then to an ultrasound, which was suspicious, and then on to a needle/core biopsy. My sister insisted on coming with me to the biopsy, and so her journey of being my caregiver began. I waited a few weeks for the biopsy results, but quite honestly after I heard the doctor say that 90 percent of these are benign, the thought of cancer left my mind. I was about to leave for a business trip for Miami when I received the call at work about my breast cancer diagnosis. Stunned and shocked, I hung up the phone and immediately called my sister. Her husband answered the phone and I managed to utter Deb’s name. He could tell that I was upset and my sister quickly picked up the phone. I was desperately trying to breathe, I gasped to find my voice to utter actual words, but ultimately found myself unable to speak. However, no words were required, the silence mixed with sobbing said it all – she understood, I had breast cancer. Continue reading

Hear My Voice: Living the Life of Clichés (That Are True)

LBBC Blog - Scott Cotlar%27s PhotoScott Cotlar writes about living by common clichés for people affected by metastatic breast cancer.

When I was first diagnosed with metastatic male breast cancer, I was not prepared to make any major changes in my life. There were just a few small lesions in my lungs. I was fully functional, working full-time as an attorney and had no interest in changing my daily routine.

That was about 6 years ago. Fast forward to today – lesions in my lung are “too numerous to count” according to the radiologist’s report; 5 bouts of gamma knife radiation of the brain for a total of 13 lesions treated; radiation to most of my spine; and now large metastatic lesions in my liver. Even with all of this, my good quality of life did not change until…a lesion on my tibia (a bone between the knee and the ankle) gave me an “elevated risk for fracture,” requiring that I wear a leg brace and walk with a cane.

The lesion to my tibia was the game changer. All of a sudden, my quality of life was deeply affected: the simple act of walking was no longer quite so simple. I felt an urgent need to “get my affairs in order.” As I write this blog I am preparing for chemotherapy, which I have done my best to avoid for the past 6 years, taking advantage of any hormonal or targeted therapy that I could get my hands on. I am finally starting to feel like a “real cancer patient.” Continue reading

Hear My Voice: Relationships, Faith and Being Declared NED

Serenity KislingSerenity Kisling blogs about navigating her relationships, her strong faith and being declared no evidence of disease.

As I write, it’s the first day of 2014’s Breast Cancer Awareness Month. I’ll be honest: now that I’ve been declared NED (no evidence of disease), I don’t want to watch the Today show’s #PinkPower, or think about cancer. I am so traumatized by the last 7 years, and wondering if I was going to see my son’s third, fourth, fifth, sixth and seventh birthdays.

However, I want to reflect on my journey. Despite what I have experienced with my health and my family, I got through this journey with metastatic breast cancer through faith, laughter and by living my life.

First, let me say that the breast cancer journey sucks, no matter if you are lesbian or straight. I was initially diagnosed with stage III ER/PR-positive breast cancer in 2008, at age 35. I had a 2-year-old son and a different partner at the time. At that point, my relationship with my partner was rocky, and she was not very emotionally supportive while I had breast cancer. She had no idea what I was going through: being bald from chemo, becoming so sick because of the chemo that I could not drink or eat anything, ending up neutropenic, dehydrated and in the hospital for a week and developing pneumonia.

In 2009, my then-partner and I celebrated when oncologists declared me in remission. We thought life would go back to normal and not the “new normal” commonly associated with post-treatment — just “normal,” period. It seemed like I was better after finishing treatment. I even went back to my hardcore workouts. But then I started feeling fatigue, and with that came insomnia. Life became miserable for various reasons, and I decided to divorce my partner. It was the hardest decision I have had to make thus far in my life. Through all of this, maintaining my positivity (though hard at times) and my faith got me through this major life change.

Something that made me depressed was that the oncologist who declared I was in remission did not discuss preserving my fertility before I proceeded with chemotherapy, and now it’s too late. I had been in survival mode, I had a beautiful son, and having another child hadn’t crossed my mind. I wish now I had frozen my eggs. I would have loved for my wife to carry my child. Even though I live with this regret, I have come to realize that it may not have been meant to be, and I must accept this and cherish my one beautiful son. Continue reading