Tenured Breast Cancer Student- Emily
Age at Enrollment:
Stage IV (metastatic) breast cancer
What were the primary symptoms you experienced prior to diagnosis?
I began experiencing mid-back pain about six weeks after my son was born. No exercises, stretches, heat, ice, or rest (what little rest I could get as a new mother) could touch it. I saw a postpartum back specialist, physical therapists, and other doctors, but no one had a good answer for me other than the typical “lose weight, exercise more, eat healthier, and get more rest” which felt both impossible and reductive as a new mom.
What symptom(s) lead you to go to the doctor?
I felt worse and worse, until I saw my primary care doctor for a physical, once we started trying for a second baby. I sobbed in her office, “I feel like my body is falling apart.” Little did I know that it was. At that appointment, a breast exam found a mass in my right breast, but we were unsure if it was related to breastfeeding or all of the pregnancy and postpartum hormone changes my body had just gone through.
At the ultrasound for the lump, I was immediately sent for a mammogram, then a biopsy, then to meet with the breast surgeon. My diagnosis was unequivocally breast cancer. In my gut I knew that this might be the root of so many of my health issues, but the doctors I saw continued to dismiss me. I sought a second opinion with my oncologist who pushed for more tests, revealing bone metastases.
I underwent a total hysterectomy and salpingo-oophorectomy (uterus, cervix, fallopian tubes, and ovaries removed) and was on targeted and endocrine therapy for the last year. Unfortunately, my most recent PET scan revealed that my line of treatment is no longer working, so I will be entering a clinical trial in January 2019.
What has been your biggest struggle since your diagnosis?
Coming to grips with my mortality, especially as the mother of a young child. I can’t bear the thought of leaving him.
What was your hardest moment (or moments) thus far and how did you you get through it/them?
The moment in which the doctor told me that I was stage IV was the worst moment of my life. I felt like my world has gotten dimmer ever since that moment. I am searching for ways to find some light in that darkness, through community building, advocacy, and education about metastatic breast cancer in young people. But also, Ativan helps a lot too.
What has been your biggest accomplishment since your diagnosis?
Starting my podcast, The Intersection of Cancer and Life, has been a huge accomplishment. It’s been so outside of my comfort zone, but the people I have met, and the stories I’ve been privileged to hear and amplify, often give me fuel to keep going when I am struggling.
What advice would you give to someone who is newly diagnosed? What advice would you tell them to ignore?
I would tell them to ignore the idea that you have to be positive all the time. It’s unrealistic, and you need to let yourself feel what you need to feel. My best advice is to find the best mental health team you can- I have an amazing psychiatrist who does wonders in giving me a safe space to address some of my struggles and symptoms, and I know that I function better because of that. Also, having an oncology team you trust completely is so important.
How did your family and friends respond?
My family and friends have been overwhelmingly supportive, by and large. So many friendships have changed over the past year because a lot of those friends are not sure how to respond or reach out, and because their lives are going to a very different place than mine: they are having babies, going back to work, and I’m navigating treatment changes, fatigue, side effects, and a very different life.
Since your diagnosis, what does it look like to you to “get back up” ?
I am struggling to do that right now. I used to be able to face the hard parts more head-on, things like my mortality didn’t scare me quite as much. Now, I have a much harder time with it. I often try to write to get a greater sense of perspective of whatever situation I am in (and as a lawyer, I like to make sure I have a record!)
When you feel overwhelmed or anxious, what do you do?
Pop an Ativan, take a hot shower, and go to sleep!
What did you know about the type of cancer that you were diagnosed with prior to your diagnosis?
I knew very little, especially about metastatic breast cancer. I never considered myself at risk, and certainly didn’t know the statistics, like that 1 in 8 women will get breast cancer in their lifetimes, and 30% of those diagnoses will metastasize, and that metastatic disease only receives 7% of funding for research but still has a life expectancy under 4 years and kills 114 people each day.
What do you now want people to be aware of?
Have you created any meaning out of this experience? If so, what was it/how did you do it?
I have started my blog, Beyond the Pink Ribbon, as a way to document my diagnosis and treatment. I also started a podcast, The Intersection of Cancer and Life, as a way to share the hard stories and tough parts of life with cancer.
How did/do you find joy during this experience?
Finding the people who have become my community has been amazing. It’s the worst club with the best members.
Since your diagnosis, what new belief, habit or behavior has most improved your quality of life? How has your diagnosis informed your life?
I’m more likely to just do something I want to do- like write, or start a podcast, rather than sit on the idea. I don’t sit around waiting for the “right” time.
Did you learn anything about yourself or your life? If so, what was it?
Honestly, I saw so many of my flaws in my abilities to cope. It’s something I’ve had to work on a lot in order to be able to be more present with my family. A lot of people say they appreciate their family more and cherish time with them more, but my coping mechanism was to withdraw. I had to learn to manage that coping mechanism so that I could actually spend quality time with them.
If you could write anything you wanted on a billboard in NYC’s Times Square that would reach millions of people, what would it read?
Go beyond the pink ribbon. We need research funding, policy changes, and recognition of the needs of the metastatic community if we are serious about ending breast cancer.