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.

 

Mets Monday: Reflecting on Those Who Joined us for the Annual Mets Conference

This past weekend we held our 9th Annual Conference for Women Living With Metastatic Breast Cancer at the Loews Philadelphia Hotel. More than 300 people from 42 states came and gathered information, connected for support—and voiced their concern that few in the general public understand the scope and gravity of living with stage IV breast cancer. We’ll be posting lots more about the conference in the coming days, but here’s a quick look at some of our participants during the event.

LBBC’s Hear My Voice volunteers organized a group to depict the need for greater awareness of what metastatic breast cancer really means and to gain insight and support from those around them.

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For others, the conference provided an opportunity to gain support from meetings others facing a similar diagnosis.

This #MetsMonday, we acknowledge the loss of 108* people every day to metastatic breast cancer. We will continue to highlight the needs and experiences of people living with this diagnosis, especially as we develop a public education and outreach campaign that will launch this fall. Together, we can make all the difference in our own unique way.
If you are inspired to share your thoughts on living with metastatic disease please add your voice here or to our Facebook page or Twitter feed.
*The 108 figure comes from the 2013 American Cancer Society Breast Cancer Facts and Figures. The number of estimated deaths from metastatic breast cancer in 2013 was 39,620. Divide that by 365, and you get 108. The number of estimated deaths increased to 40,000 in 2014.

Changing The Way I Viewed Stage IV: How I Learned I’m Not Alone

Sheila Johnson-Glover is back on the LBBC blog to talk about the Annual Conference for Women Living with Metastatic Breast Cancer, how it changed the way she saw her diagnosis and connected her with a community of support. Learn about our Ninth Annual Conference for Women Living with Metastatic Breast Cancer, taking place April 11-12, 2015 in Philadelphia.

SheilaJohnsonGlover

Motivating, exciting, empowering, community building, love, strength, laughter and unity – these are the words that describe how I felt during and after I attended my first Annual Conference for Women Living with Metastatic Breast Cancer. For me, this conference was a game changer on how I viewed my diagnosis. The event gave me a new hope and a new beginning. I determined then that I would fight and continue to fight and to encourage other’s to attend this conference so they too can make lifelong friendships and get all the updates on research, treatment and support for people living with a stage IV breast cancer diagnosis.

I was diagnosed with HER2-positive metastatic breast cancer in December 2009. I had to ask my doctor, “Well how many stages are there?” My doctor responded, “Sheila you have the worst one.” As you can imagine, my heart felt like it had exploded and my whole body went numb. I needed to know more about metastatic breast cancer and meet women like myself who were living with this diagnosis, and learn if they felt the same way I did emotionally and physically. I was a total wreck when I learned I had stage IV breast cancer. I knew nothing about stage IV and I didn’t have anyone I could relate to.

Living Beyond Breast Cancer has been a true blessing in my life. I was introduced to LBBC by my support group, the Young Women’s Breast Cancer Program in St Louis, Missouri, and what a joy it’s been! I soon learned about the amazing conferences LBBC hosted, and I thought attending one would be a great opportunity to meet those who understood the same battle that I faced every day. I wanted to ask other people living with stage IV breast cancer questions like how they deal with side effects and what questions I should ask my oncologist. I would later learn that every cancer treatment plan is different but still, I needed to hear from others who understood what I was going through.  Continue reading

Hear My Voice: ‘You Beat it by How You Live’

Norma Pitzer Kelly

Update 10/7/15: Norma passed away in September 2015. Below is a blog post she wrote for LBBC.

On Super Bowl Sunday, The NFL Countdown crew aired a tribute to late ESPN anchor Stuart Scott, who passed away last month from cancer of the appendix. Hear My Voice blogger Norma Pitzer-Kelly writes about the sports anchor’s decision to share his cancer experience with the public, and how his words can guide those living with stage IV breast cancer.

Stuart Scott died on January 4th, 2015. If you aren’t into sports or have friends and family who watch Sports Center on ESPN, you may have no idea who he is. Stuart was a sportscaster and host on that show. He was a pioneer in sports broadcasting and was well loved by professional athletes, celebrities, co-workers and friends.  He was also a cancer patient.

Stuart fought this disease for 7 years. It started in 2007 with an emergency appendectomy which turned out to be cancer of the appendix. Did you even think cancer of the appendix was a thing? I didn’t. Cancer is an insidious monster and it will attack you anywhere – I know that, and yet I didn’t think about the appendix as being susceptible. I was introduced to Stuart while watching Good Morning America anchor Robin Roberts interviewed him last spring.  During that interview, he told the story of his diagnosis, talked about his daughters and his refusal to give up hope.

Stuart was a devoted and loving father, he was an icon in the sports community, and his style and catch phrases will live on, but he, unfortunately, will not. After fighting like a champion with strength, grace and a quiet dignity the monster took his life, and those daughters he was so devoted to will have to live the rest of their lives without him.

I didn’t know Stuart personally, of course. I can’t even say I watched his show on ESPN – I didn’t.  But after following his journey with cancer, I feel sadness at his loss, as if he had been a friend. Having cancer gives you membership into a club you never wanted to join and camaraderie with other “members” that make you feel like old friends even if you’ve never met. As a metastatic breast cancer patient, I have felt this connection to others first hand many times over. 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

Hear My Voice: From Cancer Mess to Organizational Success…

Katherine O'BrienKatherine O’Brien didn’t let being messy get in the way of organizing for metastatic breast cancer advocacy, awareness and support.

I have been living with a small volume of bone mets since 2009. In some respects, I think my metastatic breast cancer shares some of my character flaws. We know that cancer represents cellular chaos—all cancers start because abnormal cells grew out of control.

I can’t say that I am out of control, exactly, but I will confess to being a messy person. Organizational skills have never been my strong suit. I have purchased many filing systems, sorters, tote boxes, but inevitably I always default to my H&P ways: Heaps & Piles. Heaps of things represent unstable stacks—assorted mail pieces, notebooks, brochures, various business cards that spring up on my desk like toadstools after days of rain. Piles have fewer shape variations and more structural stability: I have piles of books on my coffee table, piles of CDs on an end table and, of course, piles of laundry.

If I were a neater person, I would probably be a far more efficient person. But at 48 years old, I am just happy to muddle along. I am glad my cancer—so far—seems to have this same attitude. It is too disorganized and lackadaisical to do too much. Let’s face it: I am the Oscar Madison of the metastatic world, too.

I thought of all of these things yesterday when I heard Joan Lunden actually say the words “metastatic breast cancer” on television as part of a story to kick off Breast Cancer Awareness Month. In prior years, such coverage focused almost exclusively on early-stage breast cancer. They never acknowledged either the 150,000 U.S, people living with metastatic breast cancer or the 40,000 U.S. people who die from it annually. Continue reading