selected answers from interviews
interviews are online and in-person.
the in-person interview process could be two questions to twenty questions, and can range from twenty minutes to two hours depending on the person and how much they want to share. these interviews are recorded, so that I may be emotionally present with participants. If you are interested in being interviewed in-person, please contact me.
here is a selection of answers from some of these interviews.
if your cancer (or high risk/gene) was an object, what would it be? Describe it as much as you can.
"It would be a gloomy haze that envelopes me that never leaves." - Trina
"Like every drop of water on earth. Heavy. Powerful. Destructive. Eroding. Its a heavy weight, theres a ton of pressure, and it wears away at you. And you know that one day, it will take you. But theres also the flip side of it. All the good you can see if you choose to look. It can be peaceful. Freeing. Cleansing. Life giving. You learn to take in small moments, and that makes them more powerful and enriching. Nothing good lasts forever. So I enjoy the now. There's a dichotomy that you experience in new ways each day, embracing it all is what makes life an adventure." - Laura
"Continuing with the marked for life feeling, I would call it a branding iron. Heavy, hot, causing permanent damage." - Jennifer
"Before surgery, it was a box I was trapped in with the air slowly being sucked out and the walls creeping in slower to crush me. After surgery, it's like a tattoo. It's there forever, but it can't hurt me." - Claire
"An Anchor." - Erin
"Dark, with a solid core but with an increasingly open structure as it expands outwards. At the core is my fear and the worst-case scenarios, and outward are hope and the positives of risk-based knowledge and proactive medical decisions." - Lucy
how has the experience of breast cancer affected you?
"In every way imaginable. I think mostly its shown me what I value most in this life. Its also given me the opportunity to give myself permission to slow down and take it all in. I know I can confidently say I would not be the person I am today without it all."
"I feel simultaneously stronger and more fragile than I ever though I would. Stronger because I have survived so much--a sum total of seven surgeries and chemo in less than fifteen months. With two small kids. Working full time. Publishing two books. Getting tenure (I am a professor). That all has made me feel like a rock star. But I also feel vulnerable, fragile. The cancer could come back at any time. I feel this way even though I've removed the parts of my body that BRCA1 targets. I feel incredibly mortal. I take pause before I get on a plane, before I kiss my kids or my husband and leave for work for the day. It's a paradox. I feel both stronger and weaker. I think this may have (also) given me some wisdom, although I'm not sure I appropriately wield that wisdom. Perhaps with time, the perspective I've gained will change my outlook on life." - Jessica
"I feel my mortality in ways I never did before. I worry for myself and my children. Sometimes I feel scared. But, in general, when I think about how I self-identify now, it's more about being different ("marked") from others in the population."
-Brenna, on having a high risk
What advice would you give someone who is about to have a genetic test, or just found out they had breast cancer?
"Seek others like you. Also, TELL people. Be open, frank, honest. Cancer is everywhere, but we talk so little about it. Share with others, so they can be supportive of you."
"Deep breathe and you need to realize how incredibly strong and brave you are. Go in feeling empowered and bad-ass that you are taking care of you!!" - Araceli
"Take a friend or family member with you to appointments. It can be a really overwhelming experience to listen to doctors and next steps. You might not be able to absorb what they are telling you. Ask that person to take notes. And questions will come up after these appointments when you least expect it - keep a notebook by your bed so you can joy things down. Chemo brain is real!" - Carla