My name: Carrie Kreiswirth
Where I live: New York, NY
How far out of active treatment?: Five years
The following is a timeline of my personal account:
November 2009: BRCA1 discovery following genetic testing. (After my mother found out she tested positive for the BRCA1 mutation, my fraternal twin sister and I got tested - she was negative.) I should also note that we have substantial family history—my maternal grandmother had both breast and ovarian cancer and passed away at the age of 42. In addition, my mother’s aunts were also diagnosed with breast cancer and passed away around the same age.
At the time, I was not as educated on BRCA as I am today and decided to continue surveillance every six months with mammograms and MRIs for breast cancer (and transvaginal ultrasounds and more for ovarian). If I’m being completely honest, that doesn’t mean I can say with complete certainty that I would have had a prophylactic double mastectomy had I known then what I know now.
August 2013: I was diagnosed with Stage 1, Grade 3, triple negative IDC (Invasive Ductal Carcinoma), a particularly aggressive type of cancer (so I was told). After a routine MRI, an abnormality was found in my left breast and the diagnosis was determined following a core needle biopsy.
September 2013: I underwent a bilateral mastectomy with immediate reconstruction (DIEP flap where some of my abdominal and surrounding tissue replaced my breast tissue). Psychologically, it was important for me to have, well...me, in my body.
November 2013: At the suggestion of my medical team and others who had been on a similar path, I underwent fertility treatment and later an egg retrieval.
December 2013: I started chemotherapy treatment (TC: Taxotere and Cytoxin) through February 2014 (12 weeks)
December 2015: Knowing I was BRCA1 positive and my high risk of developing ovarian cancer, I had a bilateral salpingo-oophorectomy, meaning I had my ovaries and fallopian tubes removed and kept my uterus (on the off-chance I can carry a child). This also put me in a surgically-induced menopause.
What does the word 'survivor' or 'survivorship' mean to you?
Honestly, I have mixed feelings about both words and the concept of "survivor." I know that it means you've been through some kind of hell and come out the other side although I still feel weird about describing myself in this way. Perhaps in time that feeling will dissipate but that is how I feel right now. I find it difficult when I say I'm a "breast cancer survivor" even though it is the truth and something I feel proud of. I'm not sure if I should say "thriver" or "I had breast cancer" because that's more of a statement and not necessarily owning my truth, my journey and all that it has entailed. So when I start to feel awkward about it I often think of the following quote from Elizabeth Gilbert: “The women I love and admire for their strength and grace did not get that way because shit worked out. They got that way because shit went wrong and they handled it. They handled it a thousand different ways on a thousand different days, but they handled it. Those women are my superheroes.”
If you had to describe what survivorship feels like in three words, what would they be?
Some hard shit
What are some things that have helped you during this time?
Challenging myself emotionally, physically, and mentally. Saying "YES" to things I would have let pass me by before my diagnosis. That includes training and completing my first (and probably only) marathon! Exploring different experiences which includes traveling and stepping outside my comfort zone through groups such as The Breasties and First Descents.
Biggest survivorship pet peeve?
"Well at least that's all behind you now." "It's in the past."
What's your favorite swear word?
What's something you haven't said out loud about survivorship that you want to get off your chest?
Sometimes it's a struggle to get out of bed and put one foot in front of the other.
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.
Sometimes I feel like I lose my grip on reality and it takes work to snap myself back into it. There will be days where I feel like I'm really making headway and moving forward and giving back in the most meaningful ways and something will set me off—or back—and it takes me a minute to get out of that funk and get going again. And then I circle back to that guilt factor: You're HERE. Just be happy you're alive and do the best that you can because you owe it to yourself and you have a responsibility to yourself and to others to live your life without regret and without judgement. I am constantly working on myself. I am constantly working to be the best version of ME. And sometimes it's truly exhausting and I don't know where to put it all. I know it's a work in progress. I know I am a work in progress and I'm okay with that—I just wish I had more confidence in myself.