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

Be Thankful: Jane-Ellen Miller’s Poem

???????????????????????????????Just in time for Thanksgiving, a poem from Jane-Ellen Miller, who attended our fall writing series, “Writing the Journey.”

In my secret mind, I tell myself life is good.

I woke up this morning,

My car started

I worked out.

I tell myself life is good.

 

I worked from home today,

Stopped by my favorite deli for lunch,

Enjoyed the sunshine,

And I tell myself

Life is good.

 

My son stopped by

just to check on me

Life is good.

Almost didn’t think about cancer today –

Life is still good!

 

Jane-Ellen Miller

November 2014

 

Ms. Jane-Ellen Miller brings over 35 years of diversified experience in higher education and information technology. Jane-Ellen graduated from Cleveland State University, with a degree in English.  Her passion for writing was instilled at a very young age by her Dad, who also enjoyed expressing his views by writing.

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

Hear My Voice: Dealing With the ‘What Ifs’ Before and After ‘I Do’

LBBC blog pic_AyannaAyanna Phillips writes about how she and her husband overcame the what-ifs and lived their lives together after her diagnosis with metastatic breast cancer.

 

“To join with you and to share with you, all that is to come…”

While going over our wedding vows, this was the part that was hardest for me. What a loaded statement given our circumstances. There were moments while I was planning our wedding that I was consumed with joy knowing that I had found my soul mate. I never thought I would love so deeply, trust so willingly and laugh so hard. There were also extremely difficult moments when I just about drove myself insane. What if the pain of my most current metastasis to my bones prevented me from walking gracefully down the aisle as I had dreamed? (I had acquired quite a limp at the start of the summer because of the disease in my hip.) And the one that kept me sleepless in bed a few nights after slaving over DIY projects and the perfect shade of pink…What if I get sick and we have to cancel the wedding?

Trying to balance my diagnosis and my thoughts on forever didn’t just start with our wedding. I was diagnosed just one month after our engagement. While most women are basking in the glow of their recent engagement and diving head first into the sea of planning, I was forced to put all thoughts of a wedding on the back burner and focus on my health. It felt like all the things we planned to do might never come to be. The what-ifs that come with a metastatic breast cancer diagnosis can rival the worst day in treatment sometimes. Continue reading

Hear My Voice: Remembering Us in October

SheilaJohnsonGloverSheila Johnson-Glover blogs about the importance of discussing breast cancer in the African-American community and recognizing people who are living with metastatic breast cancer.

When people hear I have stage IV breast cancer, I wonder if they automatically think I’m going to die. No one has ever said that to me, but I still wonder this sometimes. I am a stage IV breast cancer survivor, and I’m proud to say that, because after 5 years, I’m still striving and thriving. I want people to not immediately think of metastatic disease as a death sentence. I want people to understand I still fight just as hard as people with stage I, II or III breast cancer. And as long as researchers continue to develop new medicines, we still have HOPE.

I was diagnosed with HER2-positive breast cancer in September 2009 while I was still on active duty in the military. When my doctor told me I had stage IV cancer, I asked, “How many stages are there?” She said, “Sheila, you have the top one.” Is stage IV breast cancer really a death sentence? My answer would be NO.

Still, when I found out I had metastatic breast cancer, my first thought was to ask God, “Am I going to die?” As the years passed, there have been so many different targeted therapies that have been approved for treating HER2-positive metastatic breast cancer. The advances in medicine have had a huge impact on my survivorship: I’m currently on Herceptin and Faslodex, and these two medicines have been working amazingly for me. My mother died of stage IV breast cancer in August 2004, and I wish I would have known more about the disease then. I wish she had had the medicines that I’ve been on these past couple of years – maybe she would have lived longer.

I’ve met so many amazing women with metastatic breast cancer and their journeys are truly amazing, as amazing as anyone diagnosed with this disease. However, as an African-American stage IV breast cancer survivor, I haven’t met many other African-American women with this diagnosis. When my mother faced this disease, cancer was not talked about too much in our community. It goes to show that it’s a subject that needs to be addressed and discussed in the African-American community. For African-American women, our mortality rate from breast cancer is much higher than it is for any other races. We need to talk about it. Continue reading