I was connected with Emily through a mutual friend on Facebook. Here is her story…
Tell us your story / stats:
I was diagnosed in November 2017, three days after my son’s 2nd birthday and less than a week after my husband and my fifth wedding anniversary. We had, two months prior, left our New York City neighborhood of a decade and purchased a house 45 minutes north, in the suburbs. I was 32 years old, and we had been trying to get pregnant with a second baby. Obviously those plans were put on hold…..forever. My primary care doctor found my breast lump and insisted on imaging. I had been having a significant amount of pain in my back and hips over the past 18 months, and, in the course of my diagnosis, it was discovered that my breast cancer had metastasized to my bones.
C aside, tell us about yourself. What makes you, YOU!
I am an elder law attorney in NYC, but left my law practice after my son was born. My work focused primarily on adult guardianships, capacity issues, and public benefits. It has been incredible to see how much of those skills have translated into advocacy, education, and community-building following my diagnosis. I was also a college swimmer and completed the NYC Marathon in 2011, during my third year of law school.
What went through your head when you were first diagnosed?
I’m not someone who is easily shocked. That said, it took me *MONTHS* to fully process my diagnosis. The moment that the radiologist first said “I think this is breast cancer” was surreal. I was both accepting of the diagnosis and unable to process it at the same time. A couple of weeks later, when I received my mets diagnosis (diagnosis of breast cancer having metastasized to my bones, making it stage IV, inoperable, and incurable), I think I screamed the most horrible scream imaginable. It was – and continues to be – the worst moment of my life.
What are some of your personal coping skills during difficult times?
I have to make space for myself to tackle the difficult things head-on. Often, in the evenings, I take a really hot shower and let my mind go to the darkest, scariest places possible, because I have found that ignoring them does me no good. I have also tried to be more mindful of my personal needs – taking time out for myself to recharge and not letting myself get too worn-down.
Tell us about your support system. Or lack of. Where do you get your support from?
When I was diagnosed, I had no local family and had just moved to a new town, so we had almost no in-person support. I had to cobble together a support system, but now, almost a year later, it’s amazing. We have friends we can lean on, an amazing preschool, and family who has travelled numerous times this year to stay with us during the toughest parts. I’ve also been really open about my diagnosis, which lends itself to a lot of support as well. One of the things I told people in the beginning (and still do) was to send me a card – I love getting greeting cards in the mail, and it allows me to have a solid stream of support from people who can’t necessarily be there in person. It also takes the burden off of me from having to respond/entertain people when I’m not up for it.
Many people are unaware that you can do chemotherapy while pregnant. Thoughts and personal experience?
None – I’ve never done chemo!
What have you learned about yourself since dx?
I’m stronger than I ever realized, and how much I can “walk through the fire…’cause where else can I turn” (Buffy the Vampire Slayer, anyone? Only me? OK.) In all seriousness, I have found focus for my life that I didn’t have before.
What do you believe is a common misconception about being diagnosed? Or something that you’d like the general population to know about C.
I found so frustrating the dichotomy between being a “warrior/survivor” and having a “death sentence.” While this rhetoric works for some people, it was tremendously damaging for me, and I needed to find a place in the language we use about cancer where I could continue to exist. I still struggle to identify that, but I would definitely ask that people be very mindful of using the term “survivor” in particular with metastatic folks, because it fails to adequetely capture our experiences as terminal/neverending/chronic cancer patients.
Thoughts on the pink…
DONATE TO METAVIVOR! Let’s talk about breast cancer research funding for a bit. My blog is called “Beyond the Pink Ribbon” because I fully appreciate the purpose of the pink ribbon, but it currently has become ubiquitous, and hasn’t kept up with the changing dialogue about breast cancer. When we talk about breast cancer “awareness,” we need to unpack what that means: education and understanding about risk factors, about life with the disease, and about advocacy for the needs of those living with breast cancer. Fun fact: 30% of early stage diagnoses will have a metastatic recurrence at some point, but only 3-7% of funds raised for breast cancer goes toward METASTATIC research. METASTATIC BREAST CANCER IS RESPONSIBLE FOR 99% OF BREAST CANCER DEATHS AND IT KILLS 113 PEOPLE EACH DAY. We need more funds allocated to metastatic research, and we need to push for donations to organizations like Metavivor and The Cancer Couch Foundation, who fund ONLY metastatic research.
Where are you at in life now? Mentally, physically, emotionally…
At home, in my recliner, with a cat on my lap. In all seriousness, though, I am coming up on the year anniversary of my diagnosis with tremendously mixed feelings. Some metsters never make it to that mark, but it’s also very frightening because I’m reaching the point where my health becomes more of a wild card. We don’t know if/when my treatment might fail, and how that will look. It’s very scary.
Do you have any lasting side effects- mental, physical, etc.?
I’ll be in treatment for the rest of my life. I had my ovaries removed, so I’m in menopause and can never have another child. I have joint pain from the aromatase inhibitor treatment. My metabolism is shot. It’s not pretty.
Do you have any short term or long term goals that you are actively working towards?
I’m launching a podcast! It’s called “the Intersection of Cancer and Life” that is an interview format show between myself and others who are living with cancer to unpack real life with cancer.
What’s the latest happenings in your life now?
My blog: Beyond the Pink Ribbon (emilyrgarnett.com) and my podcast, which will be available on iTunes, spotify, and Google Podcasts on October 11th!