Who Was This Woman Looking At Me? Was She Even A Woman?

Tough Girl 2!Tiffany Mannino is back to share yet another of her diary entries penned to her unborn daughter Lola during her breast cancer journey. She has entitled the letters Beautifully Broken: Letters From a Girl/Woman/Human in Progress’ as she reflects on her five year journey with letting go of the past, facing fears, learning to love, finding happiness in the moment, and realizing that she is exactly where she is supposed to be in life.

Oh baby…I am so tired the computer screen is looking fuzzy, however, a few moments ago, I had this compulsion to write to you rather than crawl into bed. After nine months of being on sabbatical, I have finally gone back to work to start a new school year. I wish I could tell you the transition was easy, but the last few weeks have been grueling. I have been an emotional wreck having meltdowns on a daily basis. The best way that I can describe my state is that I feel like a beached horseshoe crab that has been flipped on its back and can’t seem to turn over. It squirms with the scorching sun beating down on its parched shell. The strangest part of this all is that as difficult as this change is for me, deep in my heart I know that I am going to come out of this a better soul. Like a molting horseshoe crab, I feel like I am shedding my old self and beginning a new. Continue reading

“Cancer, Without You, I Wouldn’t Be The Woman I Am Today”

Dana-Donofree-BioDana Donofree is back on the LBBC blog for part 3 of her story about her breast cancer diagnosis and how it led her towards a completely different life and career direction than she had originally planned…

Cancer had officially taken my life on another path. Only this time, it was one I had always wanted: designing my own line and having my own business.  The concept for AnaOno Intimates came organically from within. After cancer and reconstructions, I’d walked into lingerie stores countless times, enthusiastic at first, but then leaving with nothing but self-loathing and tears because my body was forever altered. It was like I was back in my cancer treatment days, easily identifiable by my head scarf or lack of eyebrows and eyelashes. This time I was walking around with a giant, heavy stamp on my chest: NOT NORMAL. The sheer frustration  became absolutely maddening, but the pain of being “different” or “changed” or in some dark moments, “ruined” was unbearable. I made my mind up, I knew in that moment I never wanted another woman to EVER have to go through what I did; they should feel just as beautiful, confident and sexy as they did the days before reconstructive surgery. Cancer should not and WILL NOT take that away. Continue reading

Sex and Intimacy After Breast Cancer: Susan’s Story

susan orangeThere are many ways a breast cancer diagnosis and treatment can impact your sexual life. In anticipation of our new publication, Breast Cancer inFocus: Getting the Care You Need as a Lesbian, Gay or Bisexual Person, Susan DiPronio blogs about navigating sex and dating after breast cancer in the LGBT community.

     

While we’re dealing with breast cancer and the side effects of treatment, it’s difficult to embrace our sexual needs immediately and long after treatment ends. Our bodies are ragged. We’ve been exhausted for, well, years. Maybe we’ve lost lovers or friends, and for some of us, jobs, careers. For those of us who identify as lesbian or bisexual, we became invisible, almost dissolving into the background of the LGBT community, that social scene where we’re now a stranger invited, but not valued.

When I was going through chemo, a friend came to visit me. She talked about her night out at the bars, sharing her usual brand of entertaining trash-talk. All the while not looking me in the eye, intentionally avoiding my gaze. I was used to it, expected it. My appearance scared me enough that I couldn’t look in a mirror. My friend starts telling me about a woman she was shocked to see out the night before, partying with other women, dancing nonetheless. My friend mentioned that this woman had cancer. She was stunned that the woman would be out. I was stunned that my friend was saying this to me.

Our sexual and emotional desires don’t just end because we’ve had breast cancer. Yet, people shuffle us into another kind of closet, the “cancer closet,” and assume we no longer have an appetite for sex and intimacy.

As survivors, we also put pressure on ourselves when it comes to sex after breast cancer. Breasts are a big part of sex and if they’re gone or scarred, we don’t feel as if anyone would want us and our self-esteem suffers. But sexual desire never disappears. How do we navigate this difficult metamorphosis? Where do we find the support so necessary in rebuilding a positive body image?  I’ve decided to become the person I used to be and not be afraid to touch my scars, to embrace sexuality, to look at myself in the mirror.  Continue reading

From Silent to Vocal, Invisible to Visible, Underserved to Served

2012JeanSachsHeadshotVer2WebWhy LBBC Programs Focus on Metastatic Breast Cancer in October

By Jean Sachs, MSS, MLSP
CEO, LBBC

For nearly two decades I have dedicated my professional life to educating and supporting women, men and families whose lives have been impacted by breast cancer.  Over these years I have met so many incredible people who have faced this disease with courage and grace.  Every time I meet someone living with metastatic breast cancer, her story has a profound impact on me. LBBC is and has been committed to being there for these women and men.

In 2006, LBBC learned through its groundbreaking survey of women with metastatic breast cancer what I had heard so many times from my conversations with women living with the disease.  They often felt alone, poorly understood and served. The survey’s title, Silent Voices: Women with Advanced (Metastatic) Breast Cancer Share Their Needs and Preferences for Information, Support and Practical Resources, reflected this.

Before our study, women with MBC had never been asked about their needs as they faced the reality of a diagnosis that means they will always be in treatment. The survey also told us how isolated and alone women with MBC feel within the larger breast cancer community, especially during October when the focus of Breast Cancer Awareness Month skews heavily toward those newly diagnosed or whose treatment has ended—those who appear, at least on the surface, to be doing well.

LBBC took the information shared by our MBC survey respondents and began developing programs specifically for women with MBC to educate, connect and support them. Our Annual Conference for Women Living With Metastatic Breast Cancer was founded in 2007, and specialized guides, webinars and peer support soon followed. We began to focus our October educational programs toward MBC.

Thirteen personal stories will be posted over 13 hours, written by women and men living with metastatic disease, their caregivers and healthcare professionals. The posts will appear on a special webpage on lbbc.org as well as on our organizational blog, livingbeyondbc.wordpress.com. Going forward, the LBBC Blog will feature at least one MBC focused post a month under the Hear My Voice banner.

It is my hope that this October the national conversation will start shifting to include more messages about MBC and many more voices discussing it year round. National organizations, including LBBC, have already formed the Metastatic Breast Cancer Alliance (MBCA), a group of patient advocacy organizations and industry partners seeking to improve the lives of and outcomes for those with metastatic breast cancer and their families. MBCA seeks to increase awareness and education about the disease, advance policy and strategic coordination of research funding. This group will release a landscape analysis of MBC research and services on October 13.  Together we have a louder voice and more strength to respond to the needs of those living with metastatic breast cancer.

All of this brings me back to my intertwined personal and professional commitment to LBBC- creating a world where no one impacted by breast cancer feels uninformed or alone. Our work continues.

Join Our Annual Fall Conference From the Comfort Of Your Home

If you can’t come to our annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, you can still join us for the live webstream of our morning and closing plenary sessions. Read below to learn more about our webstreams.

eblastSquare400x400 copylivewebstreams copyYou may be in the middle of breast cancer treatment. You may be a single parent and can’t attend a conference far away. Other reasons make it difficult for you to travel long-distance.

At Living Beyond Breast Cancer, we understand that you may experience obstacles that prevent you from attending a national conference that isn’t within an easy driving distance or close to public transportation. That’s why we’re bringing parts of the conference to you through free, live webstreams!

Join us on Saturday, September 27, from the comfort of your own home. Watch our morning and closing plenary sessions and ask our experts your questions! Through our webstreaming, you will be able to watch:

Morning Sessions 9:30 – 10:45 a.m. (ET)

  • Triple-Negative Breast Cancer: What We Know, What We Are Learning, How You Can Help with Rita Nanda, MD (presented in partnership with Triple Negative Breast Cancer Foundation)
  • Hormone Receptor-Positive or HER2+ Breast Cancer: What’s New in Targeted Therapies with Virginia Borges, MD, MMSc
  • Metastatic Breast Cancer: Treatment Strategies with Clifford A. Hudis, MD

Closing Sessions 4 – 5 p.m. (ET)

  • Thriving! A Discussion on Living Well—Body, Mind and Soul with Virginia Borges, MD, MMSc Lisa McLaughlin, MSW, LSW, OSW-C, and Marisa C. Weiss, MD

Continue reading

Reflecting on the “Let’s Talk About It” Series Video Shoot

20140912LTAIbehindscenesOur Young Women’s Initiative recently launched two videos as part of the “Let’s Talk About It” Video Series. Arin Ahlum Hanson, MPH, CHES, manager of the Young Women’s Initiative, wrote this post about the day of the shoot and working with the young women and video crew who helped create the additions to this series.

I always have a hard time sleeping the night before running the video shoot for the Young Women’s Initiative Let’s Talk About It Video Series. Yes, since I’m managing the project my brain is swimming with logistics, which does make it hard to relax. But I mainly can’t sleep because I’m so excited. I’ve quickly learned that these video shoots are one of my favorite work days of the year. I’m excited to meet the amazing young women from across the nation who have agreed to be a part of our video project and want to share their experience to help other young women cope with breast cancer.

Each year, the video interview participants seem to have no hesitations about arriving, meeting the group of strangers running the video shoot and then quickly launching into in-depth conversations about subjects that rarely get talked about openly.

This year’s April video shoot was no different. Assembly, the video production team, arrived with a 10-member crew and quickly set up the shoot in a small hotel room. Together, we spent the next 12 hours filming. Eight young women and three healthcare providers participated in the video shoot. Some of the young women were nervous when they arrived but relaxed once the interview started. Others had fun learning new make-up tricks from our stylist. Continue reading

“If I Can Make a Difference In ONE Person’s Life, Then I Know This Journey Was All Worth It”

imageToday we introduce Jessica, LBBC friend and guest blogger, who is sharing her breast cancer journey and how she came to discover LBBC’s Yoga on the Steps: Denver.

My journey started at the early age of 40 in late September of 2013 when I was sitting in what I call, ironically, my “happy place”. My happy place is a small chair in my bedroom next to  a large window where I look out at the mountains, decompress and think of my day, my family, what I am doing the next day or maybe what I am making for dinner. I remember standing up to go downstairs and feeling that something felt strange and cold. I checked under my shirt and saw that I had a small amount of discharge from one breast that had stained my shirt, and when I say small, I mean tiny – it was hardly visible. I changed my shirt and didn’t think twice about it and went on with my day which was having lunch with one of my best friends. We usually talk about our kids, school or maybe something our husbands did wrong the night before. That day, however, was different, for some reason we discussed what its like to get older, our aches and our pains. We laughed, and I remember the words I said to her exactly “at least you don’t have liquid coming out of your breast! A few more laughs and as always, I left, picked up my kiddos from school and went on with my daily routine.

 

A few hours later, I was sitting at home and got a call from this same friend. “Jess”, she said “I just talked to my Mom and I mentioned our discussion to her, the one where you told me about “liquid and breasts, her words to me were “My mom thinks you need to get it checked out, my Mom is a mammographer and she thinks it’s no joke”. Honestly, that is when my life changed, in an ironic twist of fate, a comment I made as a joke, saved my life.

Continue reading