Know Stage IV: Advocating, Informing and Thriving

September 18, 2017

For LBBC’s Know Stage IV campaign, on Sept. 18, members of LBBC’s 2017 class of Hear My Voice Outreach Volunteers have written about what they want other to know about metastatic breast cancer. Learn more about Know Stage IV

For Know Stage IV, Danita Jones writes about detours, facing her family history of breast cancer, correcting preconceived ideas about metastatic breast cancer, and choosing to be happy.

In 2008 I was diagnosed with estrogen receptor-positive and HER2-positive breast cancer. I was already familiar with this disease because my mother had died from breast cancer 25 years before. I viewed my diagnosis as a detour on my journey of life: I would be back on track after chemotherapy, radiation and a bilateral mastectomy and live happily ever after as a survivor. Two years later I became a widow with a 15-year-old son. I’m a strong person so it was another detour, but one I could overcome. 

Four years later I couldn’t quite get over a cold, and a chest CT scan revealed a small pocket of fluid in my lung. A biopsy was immediately scheduled and within hours my oncologist called to let me know that there were cancer cells in the fluid and he had ordered additional testing to confirm that it was indeed stage IV: metastatic breast cancer. “How could this be,” I thought. I was the only parent left for my son. After another six rounds of chemotherapy and a few months of working part-time, things were back to “normal.” But normal now included constant fatigue, chronic pain from letrozole (Femara) and problems thinking from chemotherapy.

By March 2016, after 8 straight years of some form of treatment, I had to admit that it had taken a toll on me. I just couldn’t do what I used to do and my brain didn’t work like it used to. I came to the realization that full-time disability would be the best option. With this decision a heavy burden had been lifted. I would now be able to focus on me full-time.

I was already a member of the YMCA and took Zumba and weightlifting classes 6 days a week. I was managing my pain pretty well and then in the fall of 2016 my tumor markers began to spike again and my routine chest CT scan revealed nodules in my lungs. This was so unexpected: Other than the tumor marker spike I had no symptoms. Within a week I had started six rounds of chemo again. This was a turning point for me in the way I viewed metastatic breast cancer and the way I talked about it with family and friends. I’ve always said my mom died from “breast cancer that spread,” but I had never called it “stage IV.” Mother’s Day 2017 my brain, and I guess my heart, was finally ready to call her death what it really was and make the connection that I was living with the same disease.

Throughout this journey my goal has always been to put a different face on breast cancer in order to help dispel people’s preconceived ideas of how life will be post-diagnosis. Now as a stage IV metastatic breast cancer thriver I not only want to change the face but give us a voice. When I participate in Breast Cancer Awareness Month there’s always a focus on how long people have been a survivor. For us, the up to about 30 percent of people with breast cancer who have experienced a metastatic recurrence or were originally diagnosed as metastatic, and are now living with stage IV, how do we answer that question? Other patients at chemo often ask how many more treatments I have. They are perplexed when I say I’ll be in treatment forever and finally they say, “Oh I’m sorry.” I tell them I’m not, because if I’m here that means the treatment is working. 

I take each day as it comes and I choose to be happy whether it’s a good day or a not-so-good day and to do things that make me happy. I have learned to say “no” unapologetically, and to make wonderful memories with the people I love, especially with my son.

Learn the facts. Support the cause. Know Stage IV.

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