Hear My Voice: From Doctor to Patient, a Journey into Mets World

kelly headshot fall 2014Our December Hear My Voice blogger is Kelly Shanahan, MD, who writes about her shift from being a healthcare provider to being the person receiving health care for bone metastasis.  

I used to think the hardest thing I’d ever done was survive medical school and a 4-year ob-gyn residency at Temple University Hospital when the program was in chaos and we were short five (out of 20) residents. Then I was diagnosed with stage IIB breast cancer in 2008. Then the hardest thing I’d ever done was telling my not quite nine-year-old daughter I had cancer. “Mommy, are you going to die?” was her first question and my answer was “Yes, I’m going to die someday, and so is the cat and so is the dog, but I’m NOT going to die from breast cancer – I’m going to kick cancer’s ass!” Following treatment, I thought, in my arrogant doctor mode, that I was done. I beat the disease, I was a survivor! HA!

While walking upstairs one day in July 2013, I sneezed and immediately developed searing back pain. I ignored the pain, and when it didn’t improve, sought help from a massage therapist and my chiropractor. It didn’t get better and I figured I must have herniated a disc. I’d get an MRI eventually, and maybe one of those inversion tables would fix it. I was a busy gynecologist and I didn’t have time for any herniated disc or chronic back pain.

In a supreme twist of irony, I began subleasing my office to an oncologist one day a week. While dropping off supplies on the day he was there, he noticed me limping. “What’s wrong”, he asked. ”Oh, I think I herniated a disc”, I answered. He looked at me, and said, “You’ve had breast cancer. You need an MRI and a PET scan.” Yeah, yeah, I thought, I’ll get around to it when I have time.

I finally scheduled the MRI and PET for November 14, 2013. Not done with irony, this is my birthday. I figured after the PET scan, I’d go home and go out for a nice dinner with my husband and our daughter, 2 weeks shy of her own 15th birthday.

I had turned my phone off for the tests. First was the MRI, then the PET. Being a doctor who sends lots of patients to the imaging facility where I had the tests done, I knew I could review the results with the radiologist, confirm the herniated disc I just knew I had, stop at Costco on the way home and buy an inversion table and I’d be good as new in no time. HA again. When I went to my car after the PET, there was a message from the oncologist I sublease my office to; I had listed him as my doctor. “Kelly, call me, here’s my cell number” was the message. In that instant I knew I had metastatic disease. I went back into the imaging facility and went to see how bad it was: it was in every bone in my body. Glancing at my scans, my skeleton looked like Swiss cheese. 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

A Conversation with Kathleen Swiger about LBBC’s Survey of Women With Triple-Negative Breast Cancer

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Kathleen Swiger & Janine Guglielmino in front of the poster at the San Antonio Breast Cancer Symposium 2014.

By Chris Wilson, Triple Negative Breast Cancer Foundation Trustee

Kathleen Swiger stands by her poster in the “Psychosocial and Behavioral” section of the vast hall at the San Antonio Breast Cancer Symposium, the second of two that Living Beyond Breast Cancer (LBBC) presented at this important meeting. There’s a lot interest from the attendees, both advocates and medical professionals. They study the data and ask Swiger questions about the results.

“The posters are just the tip of the iceberg,” she says, pointing to the panels behind her. “There is so much more data in the full survey.”

The LBBC study is the first survey of psychosocial, nonmedical, needs of women with triple-negative breast cancer. It provides clear and compelling evidence that women with this subtype of the disease have higher levels of fear, anxiety and worry than women with other subtypes of breast cancer. In addition, these concerns continue throughout their treatment and beyond. 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

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

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.