Things have been an exciting brand of crazy lately, so I haven’t been able to write, tho I’ve wanted to! Today I have a scan- normal, routine, but the scheduling of it was a bit abrupt. I was expecting it to be scheduled in the upcoming weeks, but after my appointment yesterday, I received a phonecall that they couldn’t get me in then, but could get me in TOMORROW (today) for ct and bone scans. So, here we are, en route to the River Road building (luxury hotel). Prayers for a good outcome are welcome.
Happy reading!–sorry, it’s long!
Who is Amy Schnitzler?
I am a daughter, a sister, a dog-mom, a girlfriend, a friend. I am a singer, a painter, a writer, a world traveler, a runner, an amateur yogi, a Community Relations Coordinator, an advocate, a teacher, a lifelong student.
How old were you when you were diagnosed? What Stage?
I was diagnosed with breast cancer at 26-years-old. Prior to my mastectomy I was tentatively diagnosed Stage 2 invasive ductal carcinoma, ER/PR+, HER2- (that’s jargon for “my cancer likes hormones”. I was officially diagnosed with Stage 3 disease post-mastectomy, as there were more lymph nodes involved than originally thought. There was a note on my diagnostic CT scan referring to a 2mm speck on my left lung, which was “too small to characterize.” This was in April of 2016. By November, following the sudden appearance of a mysterious rash along my incision on my right side, I was re-diagnosed with Metastatic disease (Stage 4), with metastases to both lungs.
What was your mindset at diagnosis?
I don’t think I had a mindset; I think I was terrified and confused, looking for concrete, black-and-white absolution in a world of grey uncertainty. My grandmother died just 10 days before I was diagnosed. I was processing tremendously heavy grief, and then was diagnosed with cancer. My feelings were all over the map. I was numb, shocked, despondent, and full of terror and rage all at once. I also sensed a bit of pressure to be “brave” and “strong,” to “fight” and “win” very early on, and I think that pressure was coming from both outside of me (cultural conceptions of the disease/”Pink-ness”) as well as within me. As a result, I felt very isolated. There was also great pressure from my oncologist to move forward with treatment quickly, which added to the sense of overwhelm. Making life-or-death decisions is not easy, especially around something as complex as cancer. I think in the beginning, I tried to say, “I got this, don’t worry, I’ll be fine, I’m tough!” when in reality I was a scared-sh**less little girl, longing for someone to scoop me up and transport me back to a world where life made sense. I vacillated between feeling powerful and powerless every 10 seconds, which was exhausting. Powerlessness is not a comfortable state for me (or any human). I think when we humans experience loss of a loved one, of a relationship, or of health and vitality, we feel out of control. If it weren’t for the support of those closest to me (and mental health rehabilitation services!), I honestly don’t think I’d be here today.
How did your breast cancer diagnosis change your life?
How did it not? To start, I was diagnosed the same week I received acceptance to Graduate Programs at Peabody Institute, Chicago College of Performing Arts, and Rider University for Classical Vocal Performance/Opera. I had to let them know that I was diagnosed with cancer and would need a decision extension as I was waiting for more information regarding what treatment would look like. Chicago College of Performing Arts responded with such compassion and told me they would allow me to defer for a year, should I need to. At that point, I was still trying to comprehend this diagnosis and processing all the feelings around it that I decided it was not the time for me to move to a new city, try to find a new oncologist there, etc. Writing to them that I would not be able to attend that Fall was heart-breaking. Music is no longer my career-path. I recently began working with a new company called Harmonigenic as a Community Relations Coordinator. Harmonigenic is a diagnostic assay that uses photonics to analyze the collagen of breast tumors to predict the risk of metastasis, giving patients more information to inform their treatment decisions. Socially, this disease terminated a lot of friendships that probably would have ended anyway, and it also led me to some incredible people I most likely wouldn’t have otherwise met. I appreciate the people in my world more (Mom, you’re the best). My values are also a bit different. In my life before cancer, my identity was very much wrapped up in my physical appearance -my weight, my body, my face, my hair. Nothin’ like some good ole’ chemotherapy to zap your hair off, give you 20 extra pounds (thanks, steroids!), and force you to challenge your ideas about yourself. I’ve had to find my worth outside of my physical identity, and truthfully, that’s been a pretty healthy thing.
What do you wish you’d know before being diagnosed with breast cancer?
I wish I was aware that breast cancer can and does happen to young women. Maybe I would have gone to the doctor the moment I discovered the lumps under my arm instead of putting it off for several months. I wish I had known about the impact of everything we consume and put onto our bodies, the harmful things we are exposed to on a daily basis. Diet is so important! We live in a culture of processed food, and we are also the sickest we’ve ever been. There’s a link there.
How has this experience awakened you to yourself and your purpose?
Cancer has been the ultimate perspective-shifter for me. I think I was always an empathetic person, but receiving this diagnosis has opened me up further to the pain and suffering of others -I don’t think that I was exceptionally selfish before cancer, I think I was just young and naïve. This diagnosis has illuminated the role of human connection in the facilitation of healing on all levels. I advocate for women with metastatic disease because it is an isolating and terrifying diagnosis and we need each other’s support.
Tell me about your advocacy work.
Most of my work is centered around conversation with people about the reality of this disease. When I was first diagnosed, I began a blog to chronicle my journey with breast cancer. I was most recently featured in a Facebook live interview on Metastatic breast cancer at Pluta Cancer Center, where I receive treatment. Last February, I was featured in a NBC Nightly News story on a study about the benefits of exercise for chemotherapy/cancer treatment induced fatigue. In October of 2016, I was in a local news story discussing breast cancer in young women and the power of self-awareness. I am currently co-facilitating a grief group at a local mental health rehabilitation center, where I openly share my experiences with the disease. My new job at Harmonigenic is all about patient relations.
What word do you wish you could take out of the breast cancer vocabulary?
Mortality. We need a cure. This is a disease that kills 41,000 women (and men) per year -that’s 113 women per day. It angers me that people believe breast cancer is “curable” in the early stages, when 1/3 of all women diagnosed with early stage disease will become metastatic at some point after completing treatment -whether it’s months or years down the road.
If there was one thing you could change about breast cancer and how people view it, what would that be?
It is not a pretty pink disease. Not everyone who gets diagnosed gets to walk away. Metastatic breast cancer is the only version of the disease that kills, and yet it receives the least amount of attention (people don’t even know what it is!) and the least amount of funding for research. Less than 7% of all the money received for breast cancer research goes to metastatic research. This needs to change, and it needs to change NOW.
Why is it so important to you to support other women with breast cancer?
Receiving this diagnosis and needing to make decisions regarding barbaric, though possibly life-preserving treatment is pure unadulterated Hell. The isolation I felt is something I can’t explain well with words. I can only speak of the constant clenching in my chest, the empty gnawing feeling in the pit of my stomach, those delicious weary moments between sleep and wake where all of it felt like a terrifying nightmare, where if I put my two feet on the ground, I’d walk into the world I remembered from the life before breast cancer… and then the crashing back to reality… No woman should have to experience that (or any variation of it) alone. This diagnosis has led me to some extraordinary women who are also dealing with this disease -I’ve lost some dear friends, too. Connecting with other women who are facing the same unique challenges, navigating their journeys in their own way has been full of opportunity for learning, growth, and healing. I also believe that systemic change is only possible when we come together, inspire one another, and educate our communities on the ugly reality of this disease, and point people to the organizations that actually support us with research, such as METAvivor, and METup.
What would you tell a newly diagnosed young woman?
Breathe. Focus on surviving in these early days. Balanced, healthy eating, hydrating, and sleeping will help, as will laughter. Reach out when you are feeling vulnerable, which will probably be often. Don’t suffer in silence; you are not alone. Harvest your eggs even if you aren’t sure about children. It’s better to have the option than not. And most of all, be gentle with yourself -you just stepped into a whirlwind. Allow yourself time to process and grieve. And as far as treatment decisions go, do your research, ask lots of questions, tune out the noise around you, and do what feels right to you -it’s your life.
Has cancer changed how you see adversity?
I certainly do not get upset over “little” things as often as I used to. I’ve always been an anxious, easily flustered person, but these days I reserve my panic attacks for Doctors’ offices, scans, port draws, etc. I think getting diagnosed with cancer forces a person to face adversity head on.
What one word defines you?
Determined. I am determined to live an awesome life, a life not dictated by my treatments or side effects, or cancer in general. I am determined to love the beautiful people in my life. I am determined to contribute to this world in a meaningful way.
Dear expensive hair, stay out of my eyes please. Also, this is what the end of ibrance look like (note the eyebags). 😴
Peace and love to you all💕