On Hair Loss

Last week, our Facebook followers shared hundreds of tips for coping with hair loss. Blogger Judy Weinstein wrote this post about her personal experience with hair loss and how she handled the side effect.

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When you get a cold, you feel sick right away. Strep throat? It’s obvious something is wrong! Kidney stones? You are in the hospital crying in pain. Cancer is different.  Cancer silently does its evil damage while you are going about your daily life. You are working, laughing, and likely “sweating the small stuff” while your cancer sneakily divides and tries to conquer.

One day you wake up and realize that something isn’t quite right. You have a slightly unusual lump, a little blood where you shouldn’t, or unexplained pain. Then the bombshell is dropped. “You have cancer.”

For many women who endure chemotherapy, one of our preoccupations is about becoming bald. I was squarely in that category. I generally don’t wear make-up and I don’t spend a long time pondering what to wear.  I did, however, spend a lot of energy over my lifetime thinking about my hair. I will always remember the very first time I cut my long hair up to my chin. I was in 6th grade.  One of my parent’s best friends said “Today we lost our little girl.”  I puffed with pride that a shorter haircut could make me look all grown up. Soon after, I grew it out and curled the front in a desperate attempt to look like Farrah Faucet. Then later came the big hair stage… even with a perm my straight hair didn’t cooperate!

After my third baby was born, my hair began to change. I started to become gray and over time my hair became more wavy, frizzy and unruly.  And did I mention gray?  Those wiry gray strands were the worst!

Figuring out a style that was best became a monthly challenge.  What was the right color for my changing hair? This time it was too blonde…this time too red. Should I go short? Long? Bangs? No bangs? One style was good for the winter and another for the summer humidity. One style worked for pulling it back when I played tennis but wasn’t flattering at other times! My patient hairdresser, now a close family friend, made whatever changes I asked for, knowing that I would always second guess my hair decision.

Once I had a cancer diagnosis and knew I was facing hair loss, thinking about becoming bald was admittedly terrifying. How humiliating to lose what I thought played such a heavy role in defining my looks and by extension, who I am. My cousin told me about the penguin caps one can wear during chemotherapy that works to prevent hair loss. Suddenly my emotions began to shift. The only thing I could think of worse than losing my hair, was to sit for several hours, being infused with toxic chemicals, wearing an ice-pack on my head. I was NOT willing to do that to prevent hair loss.  So maybe, just maybe if I wasn’t willing to go to such great lengths to prevent hair loss, perhaps it wasn’t as important as I initially thought.

I began losing my hair on January 1.  While I had the rest of my uncomfortable treatment ahead of me, I also had the hope and wonder that comes with any new beginnings.  What would this year bring? Finishing treatment, my middle son graduating from high school and starting collage, my youngest son starting high school and thanks to this treatment, celebrating my half century birthday! Never before did I deeply appreciate the thought of reaching this milestone.  As my grandmother used to say “It’s better than the alternative!” Continue reading

Kindred Spirits at Namas Day Philadelphia

This blog post by Liz Barker originally appeared on ChangedbyChance.com on April 28, 2015. It was reprinted here with the author’s permission.

I volunteer at numerous Living Beyond Breast Cancer events through the year. Spring brings an all-day yoga event called Namaste`Day to Philadelphia. LBBC is an advocate of yoga because of its mind, body, and spirit connective healing philosophy. They appreciate that healing a life threatening illness such as breast cancer needs to be addressed with all of the body’s senses. And so, they had a booth at Namas Day and I volunteered because I love yoga.

Typically, there are at least 2 of us survivors at an LBBC event and it is always nice to meet someone new and to hear their BC story.

Well, this encounter turned out to be extraordinary! (Of course, it should have been no surprise given the spiritual nature of Namas Day.)

So, my fellow volunteer that day is Elizabeth Howanski. As usual, we swap our Breast Cancer stories. As usual, I expect that when I tell my new friend that I am a 24 year, young survivor, she will be wowed by the survivor-ship years. Which I am grateful for every day folks.

LBBC EventHowever, much to my surprise, Betsy tells me that she is a longer survivor! Although we are both the same age (58), Betsy was diagnosed younger, at age 26. Therefore, she is now a 32 year survivor! Neither of us has a family history of BC. Our name and age similarities don’t end there. Betsy was also diagnosed while she was pregnant, at about 5 months along with same timing – diagnosed in May and due date was early October! We were both given the same trite, horrifying advice by our doctors – “terminate your pregnancy to save your life.” Sadly, our parallels end here.

Betsy followed her doctor’s advice and reluctantly terminated her pregnancy. (Remember, there was no Internet and not much history of BC at young ages or during pregnancy back then. Without question, doctor knew best.) I almost followed that advice but, I was fortunate that a family friend, a doctor himself, (an angel I call him), intervened and saved my baby’s life. Betsy and I wept and hugged as we shared our stories. I felt a bit guilty and humbled, that I was touched by an angel and that Bryan was saved. More importantly though, I felt a kindred spirit with Betsy, not only due to our similar past, but also because of our futures and our philosophies of “living beyond breast cancer.”

Betsy bravely moved on with an enthusiastic and positive spin on life. She adopted 3 wonderful children from Korea who are now 21, 29, and 31. She is a long time professional working at Drexel University’s development office. We both echoed the same sentiments about our lives – that the BC experience was a life lesson. It taught us both some sage advice. That we need to be self-advocates and to educate ourselves when we are faced with serious obstacles in our lives. It’s the 3 R’s that I talk about in my book – Recognize, Research, and then React. Live and learn.

Another day, another journey… Namaste~

Liz Barker Author Living Beyond Breast Cancer

Liz Barker is a longtime LBBC volunteer. Learn more about Liz and her personal experience with breast cancer on her blog, ChangedbyChance.com.

Yoga On The Steps 2015: Your Love Story

Yvette and JenniferWelcome!

We are excited to share our theme for Yoga on the Steps 2015Your Love Story.

When we say “Your Love Story” we’re not talking about romantic love, nor are we talking about love for family, or friends, which is all valuable and essential. When we say “Your Love Story” we’re talking about a theme for the Yoga on the Steps practice which features you at the center of your own love story, honoring your own experiences and journey. Because ultimately, self-acceptance, self-care and self-respect is the love story a yoga practice promotes.

What is your love story?

All love stories begin with something happening or not happening to you. Your expectations and world changes and your perception of “Who you are” is challenged.

There are 3 basic elements to process change:

  1. Choose a lens to view your experience. You have a choice. Do you choose to feel victimized? To fall into the trap of ‘worst case scenario’ thinking? Or will you choose to be the heroine of your destiny? Choose the lens, the perspective of yourself that empowers you.
  1. Advocate for your self-care and investigate what draws you fully alive. Will you reach out into your community for support and education? Will you love yourself enough to make yourself a priority and advocate for your personal care and joy? Choose your joy and respect your own process.
  1. Simplify and love. Clean house, unclutter, and eliminate what crowds or blocks you from doing what you love. Simplify and distill your life down to what really matters to you. Instead of talking about it, do what you love. Love is a verb, an action. You love baking, love dancing, love being with friends, love the outdoors, etc. Get engaged to what you love. Do what you love.

We invite you to come to Yoga on the Steps with the intention to empower Your Love Story in new and exciting ways.

We look forward to seeing you on the steps!

~ Jennifer Schelter & Yvette Pecoraro

Jennifer Schelter, MFA, is the founder of Yoga Schelter, Inc., and co-founder of our signature fundraising event, Yoga on the Steps. Learn more about Jennifer’s work at http://jenniferschelter.com/

Yvette Pecoraro is a singer, songwriter and Kirtan artist. She released her debut CD, “Into the Arms of Love,” in April 2010. Read more about Yvette and her work at http://yvetteom.com/

I Spy a Clinical Trial: Weighing the Benefits Against the Unknowns

Sometimes your doctor may recommend a clinical trial, a new approach that is being compared to standard treatment to see which is more effective. New LBBC Blogger Judy Weinstein writes about weighing the pros and cons of a trial she joined, ISPY2.

IMG_5627When I think back to the weeks following my breast cancer diagnosis, I picture myself in the middle of a tornado moving along at a frightening speed. One day I was pondering what to pack for my upcoming 25th wedding anniversary trip to Italy and the next I was in a swirl of medical appointment mania. I had to choose a hospital, an oncologist, and a surgeon, endure a slew of medical tests, take it all in emotionally and then break the news to close friends and family. Along the way, as all newly diagnosed cancer patients do, I took a crash course in understanding breast cancer and my particular type so I could make informed choices about my treatment. Just the vocabulary alone was enough to make my head spin! Words like triple-positive, HER2-positive, and neoadjuvant therapy were thrown around and I needed to understand it all. Just when I thought I had it all figured out, another new word was put in front of me that I needed to learn: ISPY2.

No, this was not the fun game you play in the car when you are bored and you say, “I spy with my little eye something blue,” and the other person has to guess what you are seeing. ISPY2 was a Phase II medical trial that, because of the exact nature of my cancer, I was eligible to be a participant. Questions came flooding in. Aren’t trials for people who are dying and have no other options? I know that trials are important to advance research but do I want my body to be the guinea pig? How could I live with myself if I found out the experimental medicine I was on actually doesn’t work, or has long term side effects that the doctors didn’t find out about until years later? Facing chemotherapy was scary enough. Did I want to be a part of a trial that had so many unknowns attached?

I learned that the goal of the trial is to pinpoint how each individual tumor grows and target treatment to a specific tumor type.  Today, most women affected by breast cancer receive standard chemotherapy. Some breast cancers respond to this treatment. Others do not. This study screens promising new targeted medicines that could increase success rates while reducing side effects. After much reading, talking to my doctors and to LBBC, and pondering it deeply with those closest to me, I decided to take the plunge…. well, only halfway. I found out that I could be screened for the trial, told which drug I would be getting, and THEN decide if I wanted to continue. At any point in the trial I could opt out. Continue reading

Volunteer Spotlight Q&A: Caryn Kaplan

CarynPhotoWe’re honoring National Volunteer Week 2015 with a Q&A with Caryn Kaplan, who’s volunteered for LBBC for 17 years. Digital Media Specialist Josh Fernandez interviewed Caryn about her interest in LBBC, what she loves most about volunteering and why she thinks others should volunteer.

 

Josh: You’re a longtime volunteer for LBBC. Why do you choose to donate your time to us?

Caryn: When I was first diagnosed 17 years ago, I used to crawl into my bedroom after chemotherapy and go online to look for any type of information that could help. I stumbled upon LBBC. The resources, even back in their infancy, were the best I had found. I knew it was a trusted source of information, and I knew this was the organization for me.

I started attending community meetings first and then I just felt a connection to the organization and the people who work there. I knew the fit was there. I knew it very the very beginning. Their arms were always outstretched and they always had an answer to the questions I had. Volunteering seemed like the least I could do.

Josh: What are some of your favorite activities to do as an LBBC volunteer?

Caryn: I do many activities for LBBC. Each one has its own special meaning to me. I enjoy coming into the office and helping during office hours. I enjoy attending events and representing LBBC in speaking engagements at places like Fox Chase Cancer Center. I spoke for the Combined Federal Campaign (CFC) for a few years.

I love doing the Breast Cancer Helpline. I love being an empathetic listener for the callers and giving them resources. Some need to really get ‘it’ out of their system. Others just need resources and a place to turn. I just did the Hear My Voice : Metastatic Breast Cancer Outreach Volunteer Program, which is going to be a great program – it’s already in action as we speak. It’s a wonderful way to spread the word about the need for research and creating more public awareness of what metastatic breast cancer means. I like any type of advocacy work I can do, especially if it’s for LBBC. Continue reading

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.

Navigating Genetic Testing and Family Risk

Lise Marlowe blogs about genetic and family breast cancer risk and navigating the genetic testing process. Live in the Philadelphia area? Learn more about hereditary breast and ovarian cancer risk during our April 26 community meeting.

award picture 2 (1)My cancer “journey” began last June on a gorgeous spring day after my daughter’s confirmation at Reform Congregation Keneseth Israel. I left my daughter’s confirmation service that morning filled with tears of joy and happiness; I didn’t realize that in a few hours, there would be different tears coming my way. That afternoon, I had a mammogram and breast ultrasound appointment. A few weeks earlier, I felt a small lump in the shower and wanted to make sure all was OK. As a busy mom, I honestly didn’t know the last time I had done a self-exam. I have since learned that most women find their breast cancer, not doctors. Early detection made my “journey” a little easier and according to my doctor, saved my life.

With dense breasts, the results of my mammogram turned out to be negative, but the ultrasound showed a mass in my right breast. A week later, the biopsy confirmed that I had stage I breast cancer. When I heard the words “cancer,” my whole world turned upside down. I was supposed to plan my son’s upcoming Bar Mitzvah, not have cancer. I called my rabbi and asked how to handle cancer and still be “mom.” She said “let your kids know that your job is to still take care of them, that doesn’t change with having cancer.”

The next day, I received a phone call from my primary doctor who was shocked to hear of my cancer diagnosis. He has known me since I was a teenager and knows I try my best to live a healthy lifestyle. I am a vegetarian, exercise every day and don’t smoke. After learning I had breast cancer, my doctor thought maybe I carried a BRCA gene and told me to get tested. If I was a carrier, my daughter, son, brother and nephew would have a risk of developing breast cancer, too. My heart sank hearing about this. I was already concerned about my family’s emotional health, and now I was worried about their physical health, too. Continue reading