Now Life Is Forever Altered

1493LBBC shop to support partner and blogger, Dana Donofree, is back sharing the 2nd part of her breast cancer story with us. To read part 1 click here. Today she shares how her surgery lead to life and career changing ideas and how it has directed her path for the future.

The positive to my diagnosis, if ever there could be one, was that I was HER2+. This made me a candidate for Herceptin. Before 2006, Herceptin was only used in late-stage cancers, but by the time of my diagnosis, it was approved to treat HER2+, and it had a very favorable success rate in battling the disease.

I kept thinking about the women before me with the same diagnosis prior to 2006. There were many who died waiting for the approval. There were many who died because they weren’t the right candidate. And now, there were many like me benefiting from the research and dollars drummed up by pink ribbons, walks and the memories of those women who were lost. I was grateful beyond words. Who is to say one way or another, but I believe the access to Herceptin saved my life.

There is a wave of fear, anxiety and doubt that follows the flood of joy when your cancer doctor releases you from care with clear scans and positive words. It is almost even more overwhelming than the fear that greets us survivors upon diagnosis. Because now life is forever altered. Now there is nothing but a new set of what-ifs with no real solutions to challenge them. Now I had to go back to life without cancer, but a life very different than the one BEFORE cancer. People like to call it the “new normal.” And I woke every day to a different battle ahead of me; one that was about restoring myself to some semblance of the Dana I was before the disease. 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

White House | Black Market Paint Your Profile Picture Pink

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White House | Black Market‘s philanthropic commitment to LBBC has allowed our organization to grow and expand in a way that now allows us to reach more women in need of our services than ever before.”
Jean Sachs, MSS, MLSP, CEO, Living Beyond Breast Cancer

As we continue to turn the calendar pages during this beautiful month of October, we are reminded daily that this is the month dedicated to breast cancer awareness.  How can you not notice – pink ribbons, pink building tops, pink fountains, pink toilet paper, pink professional sports teams…it’s a virtual sea of pink.  As an eight-year breast cancer survivor, it is particularly striking.  Most frustrating is to see items marketed during October with pink ribbons and to read the packaging and see that no money goes towards breast cancer research or support.  This is simply a marketing tool that companies use to sell their products.  This is an exploitation of all of the people who have experienced breast cancer.  I urge consumers to read the packaging and see where your money is going, don’t fall into the pink washing trap.

I have been actively involved with Living Beyond Breast Cancer since my diagnosis at age 31, while pregnant with my son, Hunter.  After I was diagnosed they helped me to navigate my options for reconstruction.  I became a helpline volunteer for them a few years ago and I volunteer whenever I am able.  I am currently off of the Helpline while I enjoy my children – 11, 8 and 1.  I am thankful for my life after breast cancer and for all of the support I received from LBBC.

A long time supporter of LBBC is White House | Black Market.  They, along with their sister companies, have donated over two million dollars to LBBC to fund its mission and programming!  The dollars they say they will donate, they DO donate.  They support women.  That is a statement in itself.  It is refreshing to run into a company that not only cares about their sales, but they care about the women who are their customers.  They have done many beautiful ad campaigns celebrating women who have been affected by breast cancer.  Each year they have products for sale and a large portion of the selling price is donated directly to LBBC.

This year White House | Black Market has committed to donate up to $25,000 though their “Pink your Pic” campaign.  It’s a simple way to show your support for breast cancer survivors while raising money for a great organization!  I kindly ask you to take a moment, follow the link below and Pink your Pic as a show of support for LBBC, White House Black Market and most importantly, women who have been affected by breast cancer.

Add pink to your Facebook profile pic and White House | Black Market will donate $1 to LBBC, up to $25k! Click here to get started! 

Weathering Through The Darkest Moments

post 1Today we would like to introduce Dana Donofree, LBBC friend and supporter but first time LBBC blogger! Dana’s story will span three blog posts as she shares her story and how her breast cancer journey impacted her life and career so be sure to check back to learn more! 

In the weeks leading up to my 28th birthday, cancer was the absolute last thing on my mind. I was, after all, putting together the last-minute preparations for my wedding and planning a trip back home to Ohio for my bridal shower. My career in fashion was taking off, and I was starting to realize how happy and lucky I was. Plus, I was young, taking care of myself and doing all the “right,” healthy things I would read about.

Oddly after several conversations with my best friend and sister about finding lumps in their breasts, that turned out to be benign, I guess you could say I must have had a heightened awareness to checking my breasts. It dawned on me that I too should do a self exam, but I didn’t, I had just been to my annual check up and if there was something there the doctor would find it, right? Well, it wasn’t until one day in the shower, when my wrist brushed against my armpit…yes, my armpit, that I even noticed a lump. After the initial shock of finding it, I sort of shrugged it off. My friend’s turned out to be nothing. I was going to be fine, too.

Only I wasn’t. The day before my birthday, surrounded by family, friends and bridesmaids I got the news. Invasive ductal carcinoma. Triple positive. I was staring down multiple surgeries, chemo (!) and all of the what-ifs that come along with the cancer. Everything in my life changed that day.

Obviously, my first move was to get ready for the grueling treatment and make sure I was in the best shape as possible. I was after all training for my wedding day and eating healthy and working out. I continued working my design job and tried not let cancer run my life. The May wedding got postponed, but my fiance, Paul, remained by my side throughout the whole ordeal. I got a bilateral mastectomy, spacers, reconstruction (though I opted out of nipple reconstruction). I played through the pain, I weathered the darkest moments the best I could, and I got myself involved with young survivor support groups.

Those groups were vital to my well-being. They helped me realize I wasn’t the only 20-something losing my breasts to this awful disease. They made me laugh, held my hand through the down days when I was feeling anything but beautiful and they helped me understand all of my emotions and the chemo side effects. It became such a part of my existence, I made it a point, once I recovered, to stop any woman I spotted sporting a headscarf, hear her story and pass along words of encouragement. They are also the reason why I am so supportive of organizations like Living Beyond Breast Cancer. LBBC provides a beacon of light in the cancer darkness, guiding women to resources and support networks to assist them in finding the right match to help with their treatments and recovery

Dana was diagnosed with triple positive, infiltrative ductal carcinoma at 27. She currently lives in Philadelphia with her loving and super supportive husband. They love hiking and biking when the weather allows for it, and dancing and yoga to stay healthy! She fills her days working on AnaOno, a lingerie line for breast cancer survivors, and loves every moment of it! 

Hear My Voice: Getting the Support You Need as a Young Mom With Metastatic Breast Cancer

photo-1terriYoung mothers living with metastatic breast cancer face unique hurdles and uncertainty. Terri da Silva provides insight on these issues and shares resources and tips for supporting your family while living with this diagnosis. 

Living with breast cancer is tough. It’s especially difficult when you’re a young woman trying to navigate your way through adulthood, building a career, starting a family, and then you find out you have metastatic breast cancer. The kind that rarely goes away. The kind that requires lifelong treatment. The kind that is terminal.

I was diagnosed with metastatic breast cancer in 2011 at the age of 37 when my daughter was only 2 years old. I had no previous breast cancer scares. No family history. I was otherwise healthy. Suddenly my life was flipped upside down.

Young moms with metastatic breast cancer face a unique set of hurdles. Unlike most breast cancer patients whose treatment has a prescribed end date, those of us with stage IV metastatic disease live our lives going from one treatment to the next. Praying the treatments will slow down or stop the progression of our disease long enough so we can see our kids learn how to ride a bike, go on their first date, graduate from school. Praying the side effects from our treatment won’t cause us to miss soccer games and parent-teacher nights. Praying our loved ones won’t tire of supporting us year after year after year. Praying for the strength to make the most of each day we are still here. Continue reading

Hear My Voice: How I Manage Scanxiety

LBBC Board Member Amy Lessack writes about how she manages her emotions before and after she gets scans.

“You must be freaked out every time you get a scan and have to see the doctor.”

If you are a breast cancer survivor or someone living with metastatic breast cancer, this is something that well-meaning people say because they probably don’t know what to say.

The obvious answer is, of course, I am concerned and worried. You pray to whomever, whatever to get the clean scan and the OK from the doctor that you are good for 6 months, a year, or even more.

No one ever asked for breast cancer. I certainly DID NOT invite it in my life, and it needs to go. However, that is not my journey.  I continue to be on the roller coaster of vacillating between the 3-month and 6-month of scans and back to 3-months. So how do I handle it, manage my emotions and get through it? I get through using the following seven steps before every scan:

#1           I had to make a conscious choice – “scans are my friend.” Why are they my friend? Because they are the only things that can “see inside my body” and help the doctors and me cheer when things look good, and research or make a plan when or if necessary.

#2           I now schedule my scans on Mondays and doctor appointments the Friday after the scan. This is so that I don’t have to wait to hear the results knowing that it takes 2 – 3 days to get them.  Continue reading

Hear My Voice: Living the Life of Clichés (That Are True)

LBBC Blog - Scott Cotlar%27s PhotoScott Cotlar writes about living by common clichés for people affected by metastatic breast cancer.

When I was first diagnosed with metastatic male breast cancer, I was not prepared to make any major changes in my life. There were just a few small lesions in my lungs. I was fully functional, working full-time as an attorney and had no interest in changing my daily routine.

That was about 6 years ago. Fast forward to today – lesions in my lung are “too numerous to count” according to the radiologist’s report; 5 bouts of gamma knife radiation of the brain for a total of 13 lesions treated; radiation to most of my spine; and now large metastatic lesions in my liver. Even with all of this, my good quality of life did not change until…a lesion on my tibia (a bone between the knee and the ankle) gave me an “elevated risk for fracture,” requiring that I wear a leg brace and walk with a cane.

The lesion to my tibia was the game changer. All of a sudden, my quality of life was deeply affected: the simple act of walking was no longer quite so simple. I felt an urgent need to “get my affairs in order.” As I write this blog I am preparing for chemotherapy, which I have done my best to avoid for the past 6 years, taking advantage of any hormonal or targeted therapy that I could get my hands on. I am finally starting to feel like a “real cancer patient.” Continue reading