Know Stage IV: Cancer creates a shifting sense of self

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. 

In the summer of 2015, I was having what can only be described as an identity crisis. With just three words, “you have cancer,” I knew I was facing months of chemo, a surgery that could result in the removal of one or both of my breasts, and weeks of radiation. It happened so quickly and it was so surreal, that I often felt like I was playing a sick joke on my friends and family when I told them the news. This new identity of breast cancer patient was thrust upon me.

Over the next month chaos ensued, as is typical with a cancer diagnosis. A PET scan revealed that I not only had breast cancer, but I also had thyroid cancer. The good news was that the thyroid cancer was very slow growing and easy to treat, so I dutifully assumed my new role as a double cancer patient.

That PET scan also revealed a suspicious lesion on my lung, which was the last and most challenging hurdle of my diagnosis. If the biopsy was positive for cancer, this would mean that my breast cancer had metastasized and my life expectancy would be significantly reduced. I knew that only 6 to 10 percent of patients were diagnosed de novo metastatic, meaning from the beginning, but I also knew it was definitely a possibility.

As much as I wanted to be in that 90 percent of patients, the results showed HER2-positive cancer cells in my lung, which meant I was indeed a stage IV metastatic breast cancer (MBC) patient. I was 34 years old, in the prime of my career, and training for a triathlon. In just 3 short weeks I was forced to put that life aside and assume several new roles: breast cancer patient, thyroid cancer patient, and person with a terminal illness.

I would like to think I masterfully and gracefully accepted these new identities, but it was a messy process. My lung eventually healed and I underwent 4 grueling months of weekly chemotherapy. Then I endured a thyroidectomy and lumpectomy with several complications, and lastly, 5 weeks of radiation.

At the end of all the treatments, another scan revealed that not only had the original tumors found in my breast disappeared, but the spot on my lung was also gone. I had had a complete response to my treatments and I now showed “no evidence of active disease,” or NEAD, sometimes called “no evidence of disease,” or NED. NEAD is what all stage IV patients strive for. It is the best-case scenario after being diagnosed metastatic. I resisted all the other identities forced upon me, but cancer survivor was an identity I embraced completely.

So how does one live their life “normally” after being told she has a chronic terminal illness? It’s been 2-and-a-half years since my diagnosis and the fear is still with me. Sometimes it looms large, and sometimes I forget it’s even there. I’ve spoken to 5- and 10-year survivors, and they say the same: The fear never really goes away, you just learn to live with it.

Fear can be an excellent survival skill, but chronic fear is unsustainable. I’ve sought out ways to manage that fear and enjoy the life I have left to live. Part of enjoying my life meant scrapping all the rules I made for myself. Instead of running half marathons, I now do yoga and meditation. Instead of being a strict vegetarian, I eat meat when I feel I need to. I have learned to be much more accepting of my limitations and much kinder and forgiving of myself.

Cancer gave me a glimpse beyond the smoke screen of security that nothing bad would ever happen to me or to my loved ones. It taught me that feeling “safe” is merely an illusion. None of us are immune to pain, whether it be cancer, divorce, or loss of a job. Any number of bad things can happen, and the only thing we can control is how we choose to respond to the adversity.

I choose to live my life and not succumb to the fear. I’m planning a massive 40th birthday party (still 3 years to go!), which would make me a 5-year survivor. I feel lucky to have lived such a full life already, filled with lots of travel, an amazing career, and an abundance of love and support from friends and family. But there is still so much I want to do. I’m in a transitional place now in my career and I’m considering translating my cancer experience into a career that offers support and hope to other patients living with this disease. My story is not yet finished, and I’m excited to see where it takes me.

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