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

Resilience and Breast Cancer

Rocky Mountain Cancer Center.  April 17, 2014.  Photo by Ellen JaskolResearch shows resilience can ease stress and improve life satisfaction among people diagnosed with cancer, but what does it mean to be “resilient”? In anticipation of our November 18 community meeting in Denver, Colorado, Jill Mitchell, LCSW, PhD, OSW-C, of the Rocky Mountain Cancer Centers offers some insight and tips on being resilient.

In physics, “resilience” is defined as the ability of a material to absorb energy when it is deformed, and to release that energy (bounce back).  The limit of resilience, in turn, is the point at which the material can no longer absorb energy elastically without creating a permanent distortion.

But resilience in the cancer world, is not as much about bouncing “back” as it is about bouncing “forward” – creating a “new normal” or even growing through the process of survivorship.

Resilience goes beyond just coping or just being “elastic.” It often also involves (or sometimes demands) a “permanent distortion in one’s life” (such as a loss of a breast, or a job or an anticipated future, for example).  However, it is these “distortions,” or losses, that can provide the fodder for growth and transformation when we call upon our internal resources (self-esteem, optimism, hopefulness, problem solving) and our external resources (friends and family, social and community support).

I am often awed and humbled by the ways in which people come to cope with and grow through the struggles or suffering they endure due to cancer.  One of the most important things to know is that although some people may have a more natural tendency toward resilience, we all can strengthen our ability toward resilience through a few specific strategies:

Start with your strengths – what already works for you, or has worked for you in the past?  Perhaps you are someone who needs to gather a lot of information.  Perhaps you feel rejuvenated being surrounded by nature, or writing in a journal or meditating.  Remind yourself about the strategies you already know help you to cope, and make time for those!  Resilience is about developing realistic goals and moving toward them.  Start with what works for you.

Develop and use your network of support – Share what you’re going through with your trusted loved ones, friends, and peers.   Explore support groups or consult one-on-one with your oncology social worker or other healthcare professionals who can be a resource for support, processing and validation.  Asking for help and sharing your thoughts and feelings with someone you trust can feel challenging and uncomfortable for people who are used to being in control or self-dependent. And yet, social support is a critical cornerstone for resilience.  Continue reading

Writer Gives Tour of Breast Cancer Journey, from A to Z

The cover of Madhulika Sikka's book, "A Breast Cancer Alphabet." (image via http://www.abreastcanceralphabet.com/)

The cover of Madhulika Sikka’s book, “A Breast Cancer Alphabet.” (image via http://www.abreastcanceralphabet.com/)

LBBC Writer and Editorial Coordinator Erin Rowley reviews Madhulika Sikka’s book, A Breast Cancer Alphabet.

Cancerland is a place you never planned to visit. Author Madhulika Sikka didn’t want to go there either. But through her book, A Breast Cancer Alphabet, she volunteers to be your tour guide as you navigate life after a breast cancer diagnosis. “This book,” she says, “is for all of you who have become members of a club you did not want to join,” as well as for your friends and family members.

A Breast Cancer Alphabet is a quick read – Ms. Sikka, a broadcast journalist who was diagnosed in 2010, writes that she wanted “a short book that wouldn’t tax my chemo-addled brain.” But she manages to address many topics, from the more obvious ones (B is for Breasts, D is for Drugs, M is for Mastectomy) to ones that may seem frivolous next to the question of survival, but are important to your quality of life (S is for Sex, H is for Hair, L is for Looks, F is for Fashion Accessories). In the chapter T is for Therapy, she stresses that treatment should go beyond chemotherapy and physical therapy. She says it should include psychotherapy and aspects of everyday life that are therapeutic for you, like watching a marathon of your favorite TV show or staying in bed (P is for Pillows, X is for eXhaustion, Z is for ZZZ’s.) Continue reading

A Moment in Time: The Survivorship Care Plan and Follow-Up Care as a Standard of Care

Barbara Unell PhotoBarbara C. Unell is the founder of Back in the Swing USA® and co-author of The Back in the Swing Cookbook: Recipes for Eating and Living Well Every Day After Breast Cancer. Ms. Unell wrote this blog post in anticipation of our upcoming town hall meeting, Survivorship 360: Navigating Your Way Through the Re-Designed Breast Cancer Roadmap.

I love the new song, “3 Things,” by Jason Mraz. In fact, I love it so much, that I decided to make it the theme of this blog, using a bit of poetic license to play off of Mraz’s message. He sings about the three things that he does “when his life falls apart.” 

His words resonate with me today, as I reflect on this particular moment in time in the history of breast cancer survivorship healthcare, a field in which I have planted seeds, along with hundreds of caring volunteers, dedicated healthcare professionals and generous sponsors, for the past 15 years.  I hope that you will take a moment (3 minutes, actually) to sit back, listen to Mraz’s song and be inspired, too.

The song’s lyrics remind me of my “new life” that started in the exhilarating days of 1999, after my treatment for breast cancer, when I was focused on “changing the conversation” between physician and patient. As an author, educator and social entrepreneur who is committed to translating scientific research into practical action, I was determined to move that conversation for consumers of cancer healthcare from the anxiety-filled moments of asking, “Now what?” to the confident steps of receiving a comprehensive, personalized survivorship care plan and follow-up recommendations during and/or after primary treatment ends. 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.