Everyone Deserves Quality Health Care: On Writing “Breast Cancer inFocus: Getting the Care You Need as a Lesbian, Gay or Bisexual Person”

Josh_blog photoWriter and Web Content Coordinator Josh Fernandez writes about authoring Breast Cancer inFocus: Getting the Care You Need as a Lesbian, Gay or Bisexual Person, and why creating this resource was important to him and LBBC.

I came out to my primary care doctor when I was 16 years old.

I had come out to a few close friends in the weeks before, and they didn’t handle it well. After that, my anxiety gradually increased. I had been meaning to make a doctor’s appointment for other reasons, so this anxiety pushed me to schedule a visit.

There were words before and after “I’m gay,” but I couldn’t help but focus on those two. After I said them, my stomach and chest felt as if they twisted into knots. My doctor’s face didn’t change; she maintained her relaxed facial expression and asked me questions about the anxiety I had. We then talked about what was going on. Before the end of the appointment, she told me not to hesitate to contact her if I had other questions or concerns, or if I needed someone to talk to.

My doctor was affirming, which was something I really needed at that time. That’s not always the case. Among the different barriers and disparities lesbian, gay, bisexual and transgender people face when seeking health care, getting quality care that’s sensitive is a major one. Forms in the doctor’s office or a hospital sometimes offer very limited ways to describe your relationship or gender identity. Providers may make assumptions. Biases may directly or indirectly impact a provider’s approach to care.

This is why it was important to me to write Breast Cancer inFocus: Getting the Care You Need as a Lesbian, Gay or Bisexual Person for Living Beyond Breast Cancer. There are advocacy organizations and other institutions working hard to educate, inform and train healthcare professionals on adequate care for LGBT people. Things are improving – just look at the Healthcare Equality Index – but there is still much work to be done. LGBT people with breast cancer cannot afford to wait for this work to be finished before receiving care. I wanted to create a resource that could empower and help LGBT people while that systemic work continues. I also wanted this publication and related online content to include personal stories of LGBT people affected by breast cancer, so that readers know they’re not alone. Continue reading

Growing Initiatives for Metastatic Disease and LGB People Diagnosed with Breast Cancer

Catherine-Ormerod 1Catherine L. Ormerod, MSS, MLSP, LBBC’s Vice President of Programs and Partnerships, blogs about new resources and programs we developed for people living with metastatic breast cancer and LGB people affected by the disease.

This month, LBBC introduces two new initiatives to provide our brand of trusted information and support to two underserved populations in the breast cancer community: people living with metastatic breast cancer (MBC) and lesbian, gay and bisexual people diagnosed with breast cancer.

LBBC’s Hear My Voice Outreach Program will train 25 individuals from around the country and who are living with metastatic disease to connect others with resources, information and support for coping with stage IV breast cancer. Original LBBC research, confirmed by subsequent surveys, revealed that those living with MBC feel isolated, misunderstood and often unaware of programs and resources tailored to their experience. Other studies show that participation in peer outreach programs improves emotional health and well-being.

I see the power of connection at every one of LBBC’s conferences and thus I am very excited to begin the Hear My Voice Outreach Program at LBBC’s Annual Conference for Women Living with Metastatic Breast Cancer in April. We have already received many applications for the first Hear My Voice, so we know we have tapped into a large, unmet need.

Our second initiative centers on original content we developed to assist lesbian, gay and bisexual people living with breast cancer get the quality of care they need and deserve. For many, coming out to members of their healthcare team can be difficult or scary. The guide, which is the first of its kind for people with breast cancer, provides information, support and resources to help make having these conversations easier. Continue reading

My Fear of Breast Cancer Recurrence (A Poem)

EliseBourneBusbyThe fear of recurrence, or fear of cancer coming back, is one of the most common worries among people affected by breast cancer. Elise Bourne-Busby, EdD, wrote this poem about her own fear of recurrence in anticipation of our free January webinar on this topic.

The fear that cancer may invade my body again
Keeps recurring daily in my brain,
I must change my habits, if I want to stay healthy
Good health is not cheap, I must re-assign my money,
Good nutrition first, eat only the best
Fresh fruits and vegetables, get plenty of rest,
No candy and soda, drink water every day
I am what I eat, and for this I must pay,
My immune system is the core of my being
My body is designed to do the Self–Healing,
I must treat my body kindly, I must help the process
Exercise a little more, eat a little less,
My doctors will treat me, but I must keep the appointment
Get frequent health checks, even though inconvenient,
I must not be scared to ask my doctors any question
They are the experts, I pay for this information,
I must not be afraid to say I don’t understand
I must always, always get a second opinion,
I need my health, so I must remember
To ask my doctors for my health numbers,
Show me my glucose, cholesterol and blood pressure
And when I go home I’ll take my waist measure,
My good health is not only important, it’s mandatory
I must fire my doctors if necessary,
But I am not perfect, I do not always rest
Sometimes I eat junk food, and make my life a mess,
So I have to stay strong, and talk to myself daily
Nurture the core of my being, to balance spirit, mind and body,
I must invest in good health, fear is not an option
I must take care of me, that’s the only solution.

Elise Bourne-Busby, EdD, is a 15-year breast cancer survivor, and is a Reach to Recovery volunteer for the American Cancer Society. She is one of the founding members and chairperson of the group More Than Friends, which gives Sharing and Caring baskets to cancer patients undergoing treatment, provides transportation, makes home and hospital visits and assists the uninsured and under-insured with information to solve medication needs and financial issues.

The fear of recurrence doesn’t have to run your life. Join us on Thursday, January 29, at noon ET, for our fear of reccurence webinar, to learn about practical tools to help you manage your fears.

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