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

I Wasn’t Broken or Fragile…I Just Had Cancer

20141011_123702Today, LBBC blogger and friend Natalie is here to share what it was like for her to hear the words “You have breast cancer” and how her and her family reacted.

My name is Natalie Gamble, I am 43 years old and in May of 2014 one phone call changed my life forever. ” Your biopsy came back positive, Natalie I’m so sorry but you have cancer.” Cancer? My first reaction of course was tears. I cried in my husband’s arms afraid of the unknown because while an enlarged lymph node was positive for cancer my mammogram and ultrasound had shown nothing but benign cysts. My first thoughts after my crying jag were: “The Devil is a Lie!” Cue my second reaction, I got mad, I mean fighting mad and decided right then and there no matter what I was faced with I was going to fight and I was going to win. The next few days were a blur of appointments, procedures and tests I never even knew existed. After it was all said and done I was diagnosed with Triple Negative Breast Cancer, Stage II. 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

Hear My Voice: ‘You Beat it by How You Live’

Norma Pitzer KellyOn Super Bowl Sunday, The NFL Countdown crew aired a tribute to late ESPN anchor Stuart Scott, who passed away last month from cancer of the appendix. Hear My Voice blogger Norma Pitzer-Kelly writes about the sports anchor’s decision to share his cancer experience with the public, and how his words can guide those living with stage IV breast cancer.

Stuart Scott died on January 4th, 2015. If you aren’t into sports or have friends and family who watch Sports Center on ESPN, you may have no idea who he is. Stuart was a sportscaster and host on that show. He was a pioneer in sports broadcasting and was well loved by professional athletes, celebrities, co-workers and friends.  He was also a cancer patient.

Stuart fought this disease for 7 years. It started in 2007 with an emergency appendectomy which turned out to be cancer of the appendix. Did you even think cancer of the appendix was a thing? I didn’t. Cancer is an insidious monster and it will attack you anywhere – I know that, and yet I didn’t think about the appendix as being susceptible. I was introduced to Stuart while watching Good Morning America anchor Robin Roberts interviewed him last spring.  During that interview, he told the story of his diagnosis, talked about his daughters and his refusal to give up hope.

Stuart was a devoted and loving father, he was an icon in the sports community, and his style and catch phrases will live on, but he, unfortunately, will not. After fighting like a champion with strength, grace and a quiet dignity the monster took his life, and those daughters he was so devoted to will have to live the rest of their lives without him.

I didn’t know Stuart personally, of course. I can’t even say I watched his show on ESPN – I didn’t.  But after following his journey with cancer, I feel sadness at his loss, as if he had been a friend. Having cancer gives you membership into a club you never wanted to join and camaraderie with other “members” that make you feel like old friends even if you’ve never met. As a metastatic breast cancer patient, I have felt this connection to others first hand many times over. Continue reading

Celebrating My Five Year Milestone

Surgery Day: Tiffany just before her double mastectomy.

Surgery Day: Tiffany just before her double mastectomy.

LBBC blogger and friend Tiffany Mannino is back, but this time, instead of sharing one of her entries from her self-titled letters ‘Beautifully Broken: Letters From a Girl/Woman/Human in Progress’ penned to her unborn daughter Lola during her breast cancer journey, she’s here to share what being 5 years out from her cancer diagnosis means to her and what she’s learned in the process…

Three weeks ago, I celebrated my five year survivor anniversary. Whether or not the medical world would allow me to call myself ‘cured’, December 16th was an absolutely incredible day and a milestone I will never forget. They say it takes a village to raise a child, but I as reflect on the last five years of my life, I believe that it also takes a village to raise a cancer survivor.  I will never forget when it first hit me that I had my very own village. May 2010…my first Race for the Cure as a survivor. Our Breastfix at Tiffany’s team of more than twenty came together on a very cold, May morning. I was freezing and SO weak from chemo, but I crossed that finish line with tears in my eyes and incredible joy in my heart.  I can’t ever remember a time feeling more loved and supported.

Today: Celebrating where life has taken her.

Today: Celebrating where life has taken her.

I can’t believe that moment was almost five years ago. In some ways it seems like yesterday and in other ways it seems like a lifetime ago.  Of course, me being me, I have taken a lot of time to reflect on what I’ve learned and how I have grown from this experience.  In some ways, my post cancer journey has been more difficult than being in ‘battle mode’.  Having cancer changed the course of my life and although I was unbelievably thankful that God healed me, I also had to ask, “Ok. I’m alive. Now what?” I was in my late thirties, divorced, unable to bear children, and completely lost.  Several years later, I’m still trying to figure it all out, but the greatest thing I have learned is that I am so blessed because although I may not know where my life is headed, I have a village. I have family, friends, neighbors, co-workers, students, parents, doctors, yogis, trainers, fellow survivor sisters, bloggers, and even former boyfriends who love and support me no matter what.

Continue reading

‘Tis the Season for Giving

10478588_10204051655830539_1428283575535628673_nIn her role as Vice President of Advancement at Living Beyond Breast Cancer, Sandy Martin works directly with the community of individual donors and corporate partners whose financial support allows us to further our mission of connecting people to trusted breast cancer information and a community of support.

One of the things that I often admire most about the work we do at LBBC is the level of commitment to our mission that is shared by our constituency.  Recently, I was able to reflect again about how deep that commitment runs.

Over the last few weeks, as we have been preparing stories for our upcoming quarterly newsletter, Insight, this admiration struck me again.  That’s because an article in our Spring 2015 edition will feature personal reflections by some of our supporters about what LBBC means to them as well as why they feel it is important to give back to our organization.  One of these stories comes from Terry Frangiosa of Harleysville, Pennsylvania.  Terry, while not diagnosed with breast cancer herself, has been a long-time LBBC supporter who says “I attended my first LBBC conference with my sister, who was diagnosed with breast cancer at the age of 33.  We were both shocked and frightened by the diagnosis, especially because she was so young.   We left feeling empowered by the information we learned at that conference. As our knowledge grew our fear decreased and the conference became a part of my sister’s healing process.  Donating to LBBC’s Guardian Angel program, a service that offsets conference registration fees for those experiencing economic hardship, is my way to help others access the information and support they need and to make a difference in their lives. I know attending that conference years ago did exactly that for my sister and family.” Continue reading

What to Get for Women Who Have Cancer: A Gift Giving Guide

Jenny Burkholder 2013With the holidays quickly approaching, LBBC Breast Cancer Helpline volunteer, Jenny Burkholder, shares her tips on gift giving for someone you love who has breast cancer. 

Last week, a colleague approached me to talk about her sister-in-law, who is about to have a lumpectomy and radiation. I assumed she wanted to talk about cancer. I was more than happy to lend my insights, but what I realized was that what she was asking me was: what can I get for a woman who has cancer? I asked her to clarify, and what she was actually asking me was: what can I buy for her so she can feel better about this whole ugly situation? And maybe she was also saying was: what can I buy for her, so I can feel better about this whole ugly situation? Either way, I’m all for gift giving; everyone benefits.

I have to admit, one of the unexpected by-products of having cancer was that I received a number of thoughtful and inspired gifts. When I say gifts, what I mean is I received many tangible items, from writing journals to pillow cases, to already read and loved books, to comfortable pajamas and organic skincare products. I also received many intangible things, like support and love, guidance and friendship. I was more than happy to receive these things because they did make me feel better, and now when I meet a woman who has been diagnosed, I send her a gift. I have given headscarves and writing journals, big hoop earrings and organic skincare products. I have also given phone calls and hugs.

So in thinking about my gift giving, I have devised a list of both tangible and intangible gifts that one can give and ask for this season and beyond. Continue reading