Living with Breast Cancer: Access the Health Insurance You Deserve

Anne-FilipicThe open enrollment period for the Health Insurance Marketplace began last month and goes until February 15, 2015. In this guest post, Anne Filipic, President of Enroll America, blogs about the changes in health insurance in the last few years and how they impact women affected by breast cancer. 

 

Until recently, pre-existing conditions have kept many women from getting the health insurance necessary to diagnose and treat their illness. So, at a time when they needed health insurance to help save their lives, many were left facing the full cost of hefty medical bills on their own. With hundreds of thousands of dollars in doctor visits, tests, medication, and more, it’s a cost that many couldn’t afford.

As a cancer survivor, you may have been turned down or charged more for health insurance in the past. But now, that is no longer an issue. Having a pre-existing condition can no longer prevent you from getting quality, affordable coverage. And you can’t be charged more for health insurance because of your medical history. This is true even if you’ve previously been turned down or charged more for coverage due to a pre-existing condition.

Now, hundreds of thousands of women who are fighting breast cancer have access to the life-saving medical care they need. In addition, preventive care for key services is now free, such as breast cancer genetic test counseling (BRCA) for women at higher risk for breast cancer, mammograms every one to two years for women over age 40, and breast cancer chemoprevention counseling for women at higher risk.  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

Healthy Recipes to Include in Your Holiday Tradition

With Thanksgiving in three days, the holiday season is officially in full swing. In anticipation of our December 3 Twitter chat, #LBBCchat: Healthy Eating After a Breast Cancer Diagnosis, Kendall Scott, co-founder and health coach of The Kicking Kitchenis back on our blog to share three recipes to add to your holiday feast.

Image via Kendall Scott/The Kicking Kitchen.

Image via Kendall Scott/The Kicking Kitchen.

Savory Stuffed Acorn Squash

I love making stuffed squash: It fills my kitchen with sweet and savory scents and fills me up without feeling bloated and tired afterward. My mother-in-law also makes her own delicious version of stuffed squash. She gave me the idea to make them up ahead of time, wrapping each half of a stuffed squash in aluminum foil, baking some immediately to enjoy now and storing the rest in the fridge for up to three days. Then you just pop them in the oven and they’re ready to eat in an hour!

Yield: makes 4 stuffed squash halves

Ingredients:

1/2 cup brown rice

1 tablespoon olive oil

1/4 red onion, finely chopped

3 garlic cloves, finely chopped

1 small zucchini, small chop

2 medium tomatoes, roughly chopped

5 crimini mushrooms, finely chopped

2 cups baby spinach, loosely packed

1 tablespoon paprika

1 tablespoon ground cumin

1/4 cup nutritional yeast

1/2 teaspoon sea salt

Dash of  pepper Continue reading

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.