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

Hear My Voice: Remembering Us in October

SheilaJohnsonGloverSheila Johnson-Glover blogs about the importance of discussing breast cancer in the African-American community and recognizing people who are living with metastatic breast cancer.

When people hear I have stage IV breast cancer, I wonder if they automatically think I’m going to die. No one has ever said that to me, but I still wonder this sometimes. I am a stage IV breast cancer survivor, and I’m proud to say that, because after 5 years, I’m still striving and thriving. I want people to not immediately think of metastatic disease as a death sentence. I want people to understand I still fight just as hard as people with stage I, II or III breast cancer. And as long as researchers continue to develop new medicines, we still have HOPE.

I was diagnosed with HER2-positive breast cancer in September 2009 while I was still on active duty in the military. When my doctor told me I had stage IV cancer, I asked, “How many stages are there?” She said, “Sheila, you have the top one.” Is stage IV breast cancer really a death sentence? My answer would be NO.

Still, when I found out I had metastatic breast cancer, my first thought was to ask God, “Am I going to die?” As the years passed, there have been so many different targeted therapies that have been approved for treating HER2-positive metastatic breast cancer. The advances in medicine have had a huge impact on my survivorship: I’m currently on Herceptin and Faslodex, and these two medicines have been working amazingly for me. My mother died of stage IV breast cancer in August 2004, and I wish I would have known more about the disease then. I wish she had had the medicines that I’ve been on these past couple of years – maybe she would have lived longer.

I’ve met so many amazing women with metastatic breast cancer and their journeys are truly amazing, as amazing as anyone diagnosed with this disease. However, as an African-American stage IV breast cancer survivor, I haven’t met many other African-American women with this diagnosis. When my mother faced this disease, cancer was not talked about too much in our community. It goes to show that it’s a subject that needs to be addressed and discussed in the African-American community. For African-American women, our mortality rate from breast cancer is much higher than it is for any other races. We need to talk about it. Continue reading

Hear My Voice: The Hope of Many Summers After a Metastatic Triple-Negative Diagnosis

Annie GoodmanNew York journalist Annie Goodman discusses the realities of a metastatic triple-negative breast cancer diagnosis, and living her life with more hope and less fear.

 

Maybe it’s all in my head. I can’t have brain tumors. Maybe I’m just depressed and need psychiatric help.

After discovering a lump, I was diagnosed with stage IIB triple-negative breast cancer on February 29, 2012. I was 30 years old with no family history of cancer. I had a mastectomy, reconstruction, four rounds of Adriamycin and Cytoxan and 12 rounds of Abraxane chemotherapy. While in treatment, I found out I had the BRCA1 mutation. On November 30, 2012, I finished radiation and my doctor declared I was in remission.

I went back to normal life. I enjoyed having a healthy appetite again. My hair grew back. I went back to work full-time. Having cancer was no longer all I could think about. It started to become a memory, and I loved life as a survivor.

Due to the BRCA1 mutation, I had to go for ultrasounds of my ovaries every six months. My first screening was perfect. In November 2013, I went for my second ultrasound, and as soon as I got into work, my doctor’s office called: I needed to come in immediately. My right ovary was 11 cm. A normal ovary is 3 cm.  Continue reading

Hear My Voice: Facing the Emotional Roller Coaster of Metastatic Breast Cancer

MBC PyschoSocial Expert Julie Larson LCSWA diagnosis of stage IV breast cancer can lead to a roller coaster of emotions, which is normal. Julie Larson, LCSW, developed this list of tips and ideas to help smooth the ride. 

The weight in the room is palpable, thick with uncertainty and fear. Later I hear undeniable hope and the unmistakable clear tone of renewed perspective. Tears swell close to the surface during intimate conversations and the roar of laughter is a quick partner to humility and grace. This is the roller coaster of emotions that inevitably accompanies a cancer diagnosis, including metastatic breast cancer. Fear, worry and uncertainty woven together with hope, renewed perspective and gratitude. Experiencing the extreme shifts is often startling and unfamiliar to many affected by metastatic disease. Yet, most of those living with metastatic breast cancer (and their loved ones) have been affected by the ride.

Often it is helpful to know these emotional ups and downs are normal. You are not alone. After all, a metastatic breast cancer diagnosis is a life-changing experience. Treatment alone often demands changes in your daily routine, shifts in professional goals and physical losses which can be challenging to reconcile. “Why me” questions and the uncertainty about the future can be overwhelming.

Finding your way through the day to day is an exercise in self-awareness, acceptance, and frustration tolerance. And yet, those with metastatic disease all over the world are not only surviving but thriving as they live with cancer. The tips and ideas below may help smooth the ride a bit for you. Continue reading

Hear My Voice: The Silver Lining in the Malignancy

Susan RosenSusan Rosen writes about staying positive in spite of her diagnosis with metastatic breast cancer. 

 

When I was diagnosed with stage III breast cancer on August 10, 2010, I never questioned the diagnosis. I never asked, “Why me?” I would deal with the diagnosis and treatment and move forward.

Not this time.

In September 2013, my cancer metastasized to my bones, liver and dura (the outer covering of the brain). After more testing, a primary thyroid cancer was also discovered.

I went through a range of emotions. I was angry, I was mad. How could this happen to me when I took all the right precautions? My oncologist reassured me that I did all I could. It didn’t matter.

When my oncologist delivered my diagnosis, he brought up an image on a computer screen. It was the image of my body, all lit up. He looked sad. 
He said the cancer has spread. He was so sorry. My oncology nurse cried. I cried. My husband looked lost.

We then needed to tell our children. My daughter is 19, and a sophomore in college. My son is 15, and a sophomore in high school. It was not easy telling them last year, as they both adjusted to their freshman years. However, we have been sharing all news, good or bad, with our kids since the beginning of this journey.

Within a few weeks we all adjusted as well as we could to this devastating news. It was time to move forward, and begin treatment. I started chemotherapy right away. I felt weak and tired, but I did not lose my hair! I am now on hormonal therapy and a bone medicine.

I am feeling fine and handling my situation well… most days. I have my moments, especially when I think of my husband and kids.  Continue reading

It’s About You: Kate Garza’s Story

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KateGarza2 for 5 28Kate Garza is back with a new blog post for our fall conference blogging series, It’s About You. The yoga instructor, writer, wife and mother of three discusses the “breast cancer journey” concept, while discussing her own and her anticipation of Breast Cancer Today: Individual Treatments, Shared Experiences.

Everyone calls it a journey – the breast cancer journey. And if I weren’t so sick of that term, I would use it, too. It is descriptive to a point, and it allows other people to remember that you are not living the life you had in mind anymore. But this so-called “journey” is really more the life equivalent of being kidnapped, thrown into the trunk of a car and driven in the dark to an unknown location. That’s the image that flares in my mind anyway, when I hear “journey with breast cancer,” a junket with only sketchy clues about where you may end up. 

I was diagnosed with stage II invasive breast cancer at age 53, almost 2 years ago now, when my kids were 15, 16 and 17 years old. Life would have been complex enough with three kids moving up and out, but throw breast cancer on top of that project and I had more moving parts than I could track with sophisticated software. 

I had a fairly garden variety diagnosis of estrogen receptor-positive/HER2-negative breast cancer. I followed the standard treatment with lumpectomy, 8 cycles of chemo and 30 doses of radiation therapy. It was the most difficult health crisis I had run across in my life and treatment left me exhausted and brain-fried, but grateful that I traversed without complication. I finished a week before number one graduated from high school. After a month off for R&R, I began taking an aromatase inhibitor (AI), letrozole. 

After 3 months of difficult joint pain side effects, I switched to anastrozole. Again, the difficulties with pain and mobility arrived, but I stayed with the second medicine for 6 months until, completely frustrated and full of pain with every movement, I gave up. I was done. I couldn’t see the point of prolonging a life that felt this bad. Did I mention that I am a yoga instructor? I couldn’t move. Not even enough to practice the yoga that might help me feel better. And working, in my chosen profession, was out of the question. So by the time my second child graduated this past June, I was 2 months into my medication vacation and starting to feel much better. I could move again. Pain with walking and the sleepless nights were beginning to fade away.  Continue reading

Blog For Mental Health 2014: The Emotional Impact of Breast Cancer

mentalhealthblogdayToday is Mental Health Blog Day 2014, a Mental Health Month initiative from the American Psychological Association. As a contribution to this day, we wanted to acknowledge the emotional impact of breast cancer, in addition to sharing resources and letting you know that you are not alone.  

Whether you just heard the words “you have breast cancer,” are years beyond treatment or living with metastatic disease, it is likely that you experienced or continue to experience a range of complex emotions due to this major life change. At LBBC, we are dedicated to helping you cope with or manage these feelings by connecting you with trusted breast cancer information and a community of support.

In recognition of Mental Health Month and Mental Health Blog Day 2014, we wanted to highlight programs, resources and inspiring personal stories by men and women affected by breast cancer.

First and foremost, we have a toll-free Breast Cancer Helpline (888-753-52220) answered live from 9 a.m. to 9 p.m. ET. Staffed by volunteers who have been diagnosed with breast cancer, our Helpline will connect you with someone who cares and knows what you’re feeling. Call today or when you’re ready!

We also have some upcoming programs as well as podcasts and presentations of previous events, many of which you may find helpful: Continue reading