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

Hear My Voice: How Far We’ve Come and Where We Need to Go

MBC Medical Expert Julie Gralow MDJulie Gralow, MD, blogs about the advances we’ve experienced in treating and managing one subtype of metastatic breast cancer, and calls for more support in research and care for people affected by the disease worldwide.

 

Substantial advances have occurred in the field of breast cancer during the 20 years I’ve been caring for people diagnosed with metastatic disease. I had a chance to reflect on this last month, when I saw a woman newly diagnosed with breast cancer whose sister had also been a patient of mine. The sister died of metastatic breast cancer in 1995 at the age of 35. There were few effective treatments at that time, and despite access to state-of-the art care and enrollment in a clinical trial, her survival following recurrence was short.

My current patient accompanied her sister to many of those last clinic visits. Memories of those visits were prominent in her mind when she was diagnosed with breast cancer in 2014, at the age of 47, and became a patient herself. Both sisters were diagnosed with HER2-positive breast cancer, but there were no approved HER2-targeted therapies in 1995. In 2014, there are four approved therapies and others in development. What used to be an aggressive type of breast cancer with a poor prognosis has now become much more treatable and survivable. This woman’s outlook is tremendously hopeful.

Thanks to the Human Genome Project, we no longer think of breast cancer as a single entity, or its treatment as “one-size-fits-all.” Our increasing understanding of cancer genomics has revealed multiple subsets of breast cancer with different behavior patterns and different responses to therapy. Dozens of new agents have been approved for the treatment of metastatic breast cancer in the past two decades, offering meaningful improvements in the likelihood of response and length of survival. Continue reading

Hear My Voice: Relationships, Faith and Being Declared NED

Serenity KislingSerenity Kisling blogs about navigating her relationships, her strong faith and being declared no evidence of disease.

 

As I write, it’s the first day of 2014’s Breast Cancer Awareness Month. I’ll be honest: now that I’ve been declared NED (no evidence of disease), I don’t want to watch the Today show’s #PinkPower, or think about cancer. I am so traumatized by the last 7 years, and wondering if I was going to see my son’s third, fourth, fifth, sixth and seventh birthdays.

However, I want to reflect on my journey. Despite what I have experienced with my health and my family, I got through this journey with metastatic breast cancer through faith, laughter and by living my life.

First, let me say that the breast cancer journey sucks, no matter if you are lesbian or straight. I was initially diagnosed with stage III ER/PR-positive breast cancer in 2008, at age 35. I had a 2-year-old son and a different partner at the time. At that point, my relationship with my partner was rocky, and she was not very emotionally supportive while I had breast cancer. She had no idea what I was going through: being bald from chemo, becoming so sick because of the chemo that I could not drink or eat anything, ending up neutropenic, dehydrated and in the hospital for a week and developing pneumonia.

In 2009, my then-partner and I celebrated when oncologists declared me in remission. We thought life would go back to normal and not the “new normal” commonly associated with post-treatment — just “normal,” period. It seemed like I was better after finishing treatment. I even went back to my hardcore workouts. But then I started feeling fatigue, and with that came insomnia. Life became miserable for various reasons, and I decided to divorce my partner. It was the hardest decision I have had to make thus far in my life. Through all of this, maintaining my positivity (though hard at times) and my faith got me through this major life change.

Something that made me depressed was that the oncologist who declared I was in remission did not discuss preserving my fertility before I proceeded with chemotherapy, and now it’s too late. I had been in survival mode, I had a beautiful son, and having another child hadn’t crossed my mind. I wish now I had frozen my eggs. I would have loved for my wife to carry my child. Even though I live with this regret, I have come to realize that it may not have been meant to be, and I must accept this and cherish my one beautiful son. 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