In the fall of 2017, I was 32 and happily married. I was working as an elder-law attorney, and I loved my job. My husband and I had just moved from New York City to the suburbs with our toddler, Felix, and we were trying for a second child.
But since Felix’s birth, I’d been suffering from back pain. I’d seen five doctors, and each one chalked it up to being a new mom lugging around a small child. I tried physical therapy, yoga and weight loss. Nothing worked. The pain got worse.
Finally, during a physical, my primary care doctor found a lump deep in my right breast. In early November, the week Felix turned 2 and my husband and I celebrated our fifth wedding anniversary, I was diagnosed with breast cancer. I started a blog, Beyond the Pink Ribbon.
My doctors assumed they’d caught the cancer early, but the back pain gave me pause. My intuition told me to seek a second opinion.
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I sought a second opinion at one of the top cancer centers in New York, and my PET scan showed cancerous lesions on my hip, spine, rib and sternum. My breast cancer was Stage IV, metastatic. I collapsed in my husband’s arms and cried. Because my cancer was estrogen-receptor positive, I started hormone blockers right away. A few weeks later, I added a targeted therapy, two pills a day total, to slow the disease’s progression.
I was suffering from hot flashes, joint stiffness and fatigue—all side effects of the hormone blockers, which had put me into menopause. My doctors thought my body might adjust better to full-fledged menopause, so I had my fallopian tubes and ovaries removed as well as my uterus and cervix. The total hysterectomy hit me hard. I had wanted Felix to have a sibling. Instead, I refocused on being the best parent I could be.
I began broadcasting a podcast, The Intersection of Cancer and Life. I wanted to expand on conversations I was having with friends about what it meant to be living with cancer, to help them reclaim their narratives, to demote cancer from being the plot of their lives to being a character.
At the one-year anniversary of my diagnosis, my husband and I were really struggling. Our paradigm had shifted from two young professionals with a growing family to a metastatic breast cancer patient and caregiver and the constraints that put on our energy, our future and our family. There were days when I couldn’t even look at my husband and my son because all I could think about was losing them. To top it off, I was also going through menopause.
My husband and I went into counseling. It was incredibly helpful. Slowly, we learned how to find our way back to sexual intimacy. I’d already lost so much to cancer, I refused to spend the rest of my life not being sexual. I wanted that level of self-care and that level of deep connection with him. Yes, it was awkward, and yes it was painstaking. We had to be very deliberate and communicative. But, in the end, we figured it out. Reclaiming sexual pleasure for myself and my marriage feels like a radical act of resistance, survival and self-love.
My targeted therapy wasn’t working, so my doctors and I decided to switch courses of treatment. I enrolled in a clinical trial for a drug that hadn’t come to market yet.
I had a brain MRI that led to the discovery of two small brain lesions. I had targeted brain radiation; both lesions shrank and became inactive.
I found out my cancer had progressed to my liver and lung. The disease was no longer responding to the hormone blockers, so I started an oral chemotherapy drug. I used skills I had learned as a competitive swimmer in high school and college: Get out of the mindset of worry, outcome and finish line. Just focus on the next step.
My PET scan showed significant liver progression as well as bone marrow involvement. Plus, my bone mets were acting up again. My oncologist, who is usually great at giving me choices, said point-blank, “You’re starting IV chemotherapy this week.”
Switching from oral to IV chemotherapy has been emotionally and physically draining (my hair fell out…ugh), but the stronger drug therapy was apparently what my body needed; my tumor markers have been declining. My doctor is very pleased, and, although I’m tired, I’m feeling hopeful.
I’m starting a nonprofit to assist families with young children in which a parent was diagnosed with metastatic cancer. Every day, I try to use my experience to create positive, long-lasting benefits for others. As I blogged, “I only know what is true at this moment: I am here, I am alive and, despite my limitations, I am living a life that I value.”
Editor’s note: At press time in November, 2019, Emily’s cancer has progressed. It crossed into the fluid that bathes the nervous system and brain. She remains in treatment and continues to fight. Our thoughts are with Emily and her family during this difficult time. Update, March 31, 2020: Emily died in mid-March. Our condolences go out to her family.
Breast Cancer 101
Breast cancer ranges from Stage I to Stage IV, which is metastatic cancer that has spread elsewhere in the body. The brain, bones and liver are common sites of breast cancer metastases, or mets.
Treatment may include surgery, radiation, hormone therapy, chemotherapy and targeted therapy, which works against cancer with specific characteristics, and immunotherapy, which helps the immune system fight cancer.
Most breast cancer tumors carry hormone receptors. Estrogen stimulates breast cancer growth, and treatment often includes medications to block hormones. About 20% of breast cancers carry HER2 receptors and can be treated with HER2-blocking drugs. Triple-negative breast cancer doesn’t express any of these receptors and is more difficult to treat.