Name: Emily Garnett
Where I live: Mt. Kisco, NY
How far out of active treatment?: In it to win it (still in active treatment forever and ever, amen).
My story:
I was diagnosed with HR+ IDC in my right breast in November 2017, three days after my son turned 2 years old. We had just moved from NYC to Westchester County, and we were trying to have a second baby. I had been experiencing a lot of unexplained pain and symptoms that couldn't be addressed, and at an annual physical, my primary care doctor found a lump in my breast. An ultrasound turned into a mammogram, which turned into a biopsy (and then a second, because there were two tumors in there). Almost 11 hours later, we were meeting with a radiologist, oncologist, and breast surgeon, and I had been diagnosed with breast cancer.
Several days later, I sought a second opinion at MSKCC, where the oncologist I met with immediately connected the dots for all of my seemingly disparate symptoms, ordered a PET scan, which revealed extensive metastases to my bones: skull, sternum, clavicle, bilateral ribs, nearly every vertebrae, iliac bones and hips, and femurs. (It was the week after Thanksgiving, so it was apropos to say that my scan "lit up like a Christmas tree." Holiday cheer and all that bullshit.) I started treatment the week of Christmas 2017: Letrozole (Aromatase inhibitor) and Ibrance (CDK inhibitor), and was put immediately into chemical menopause, effectively ending any chance of us having a second child. After a year of stable scans, and undergoing a total hysterectomy, I progressed on my first line of treatment, and my oncologist suggested I make the unusual move into a clinical trial for my second line of treatment.
I am currently in cycle 4 of the clinical trial (four months in). However, it was found that at some point, I experienced cancer progression to my brain, with two sub-centimeter lesions in my parietal lobe. I underwent stereotactic radiosurgery (very fine, targeted radiation) on 4/16/19 to treat the brain lesions. After some ninja moves by my oncologist, I have been able to continue on the clinical trial for the time being, and am currently stable until proven otherwise.
As an elder law attorney and case/care manager, I realized that I had a panoply of tools at my disposal that allowed me to forge a unique place for myself as an advocate and community-builder within the breast cancer community. I have found myself unable to shut up about the need for research, further advocacy for benefits and services, and the push for more candid conversations about all facets of life with cancer.
Q&A
What does the word 'survivor' or 'survivorship' mean to you?
It represents a binary that I am not comfortable with in relation to life with cancer. We are all surviving something—many things—in a lot of ways, and I find the term unnecessarily limiting when applied to the content of cancer. Further, it creates the implication that not surviving is a bad thing when in reality, it's going to be all of us at some point. None of us survive this life, and by utilizing language that implies otherwise does a disservice to the much-needed end of life conversations that could be taking place.
If you had to describe what survivorship feels like in 3 words, what would they be?
Still fucking here.
What's one thing you wished people outside of the cancer community understood about survivorship?
I wish they recognized that it takes on many different forms, and that so much of the survivorship language is not centered around "beating" or "getting past" cancer, but in finding a new normal with a life following a cancer diagnosis. We are irreparably changed in so many, if not all, ways, after receiving these diagnoses, and there are no untouched facets of our lives. We are living with these experiences, not leaving them in the past.
What are some things that have helped you during this time?
Ativan. Ativan. Adderall. Ativan. Support Groups. Talking peoples' ears off about breast cancer/MBC until I realize that I never get invited to stuff that isn't cancer-related anymore.
Biggest survivorship pet peeve?
Asking me when I'm going to have more kids. It's an invitation for really awkward conversation, and I'm never one to run away from a chance to be super awkward.
What, if anything do you think should be done more in the cancer community in terms of survivorship?
I wish there was more integration between early-stage and MBC, in the way that those living with an early-stager diagnosis can utilize the life experiences of us with MBC (in the ways that we are comfortable sharing them) as paths of hope, rather than fear.
Is MBC scary? Yes it fucking is, but there are a hell of a lot of us living with it, and so often, we find ourselves sequestered away or lumped together in one category, when there are so many overlaps with early and late stage cancer folks in the challenges, triumphs, and experiences, that go far beyond the stages of treatment. For example, I can't have any more kids. I'm sorta sad about it, and I am betting that there are other women out there who may not be MBC who don't feel like they have the opportunity to expand their families, and we can connect on that in a very real way.
What's your favorite swear word?
BAG OF DICKS. Giant wet fucking bag of dicks.
What's something you haven't said out loud about survivorship that you want to get off your chest? If there's nothing, that's ok.
The only thing i want to get off my chest are these goddamn boobs. It feels so strange to have this big tumor still chilling in my right breast, and even though it's not too active, and has shrunk considerably, it makes me crazy knowing it's still there.
What's your theme song?
”Here Comes the Sun” by the Beatles. So many times of change/bad news in my cancer life has come during the winter months, and it has been an anthem for me that shit's gonna get better.
Consider this a free space to say anything you want about this topic. Word vomit, away. No judgement. I want the realest of the real here.
I love that you're doing this. I have so much to say about this topic and as you know, I basically make cancer my terrible hobby 24/7. I don't necessarily hate the term "survivor" and think it can be empowering, but I find it a problematic sentiment when people use it as punctuation rather than a catalyst to further, richer conversation.
Connect with Emily on Facebook, Twitter, and Instagram, and tune into her podcast.