Read the story of Erin, breast cancer survivor
“There’s a lot of emphasis put on women and how they look, equating their value with where they measure on the scale of physical beauty and perfection. Sometimes, with all the changes that happened to my body, I don’t know where I fall on that scale anymore. I have to remind myself to throw out the scale.”
My name is Erin, I am 32 years old, I am a pediatric nurse by training and I am now home full time with my two kids, Olivia (4) and Liam (2). We live in New York City and we’re pretty active people, I take my kids out all over the city. I have been a writer kind of my whole life- not necessarily professionally, but it’s something that I have kind of dabbled in for many years. When I was diagnosed with breast cancer at 30 writing became an outlet for me to process that experience, and I have worked on some small campaigns to give back to the community. They always say the cancer club is the club you don’t want to be part of, but once you are part of it you feel so supported. There are some amazing people out there, that’s for sure!
“This is ridiculous, it’s nothing”
In December of 2019, when I was breastfeeding my son one night, I felt a lump in my breast. I had had some cysts when I was breastfeeding my daughter, so I thought it was just a normal change from breastfeeding. Fast forward several months; January, February, March go by and this lump is getting bigger and bigger. We were about to move for my husband’s job, so I figured I should probably get it looked at before that just to make sure everything is fine. But two weeks before the appointment I was like “This is ridiculous, it’s nothing, I’m just gonna drop it” so I cancelled. May came around, it was about the size of a ping pong ball at this point, and I realized I had been acting like it was nothing even though I knew that there was probably something wrong. So I finally I went and had an ultrasound done.
As soon as the technician put the wand on my breast, she kind of stopped. She started talking to her colleague quietly, they left the room and came back with the radiologist. They looked again and told me they were almost 100% sure that this was breast cancer. They don’t typically diagnose with ultrasounds but there was really nothing else that this could be. I had a biopsy done about a week later and found out that I had triple negative breast cancer. The next few weeks were a blur of scans and meetings with doctors, both in Maryland and in New York as we were in the middle of moving, and I got chemo started quickly. The next eight, nine months were chemo and surgery and recovery and reconstruction, and thankfully I was declared cancer free in December of 2019. My oncologist and breast surgeon were highly suspicious that I had a genetic component, as I got breast cancer so young, and this aggressive, triple negative form. They did a rush testing and it came back positive for BRCA1. As soon as I found out I called all of my siblings that they had to get tested. We have a pretty large family of four sisters and five brothers. Slowly they all went and got their test done, and most of them came back positive for the gene. It was a big shock for our whole family.
Once I completed chemo, I had about a month to recover and then I had a double mastectomy. I chose to have my breasts reconstructed, because cancer had taken so much away from me. I lost my hair and my eyebrows, it put me into a pit of depression for a while, I lost my energy, my strength. I didn’t want it to take even more. It’s a personal decision -my sister actually decided to go flat- but I needed that to feel like a whole person again, to feel like myself again.
At the time of the mastectomy the breast surgeon removes the breast tissue, and then the plastic surgeon goes in and places a tissue expander under the skin and muscle. These expanders are balloons, sort of, but made from a very tough plastic. After the surgery, over a period of weeks or months, you go in about every two weeks to have a saline fluid injected into those tissue expanders. As they slowly fill up with saline, they stretch the skin and muscle. It took me about a month and a half to get to the size that I wanted, after which the expanders were replaced with silicone implants.
My breasts are done now, and I’m happy with them. The nerves were cut so I don’t have any feeling there at all, but they look very similar to what they looked like pre-cancer. It took me some time to be okay with the scars and to own them. There’s a lot of emphasis put on women and how they look, equating their value with where they measure on the scale of physical beauty and perfection. Sometimes, with all the changed that happened to my body, I don’t know where I fall on that scale anymore. I have to remind myself to throw out the scale. My body is never going to look the way that it did and that’s okay, bodies are meant to change. In a weird way I’m proud of the scars that I have, they show that I went through something really hard and live to tell about it.
In it together
I initially felt a sense of guilt that I dragged my whole family into this, although it’s obviously not my fault. I felt a deep sense of sadness, but at the same time I was grateful. I’m grateful that my sisters don’t have to go through chemo like I did, and that they are able to be much more proactive than I was. I’m thankful that we found out and that my family got information about their own genetic makeup to make informed decisions about their own health. Knowing that they could be spared, and lower the risk of getting cancer, redeemed what I went through.
It was amazing to watch my sister Casey go through her decision-making process about what she wanted to do. I felt so honored that she took it so seriously and made the hard choice to have preventative surgery. It’s a weird but meaningful thing to share together, giving each other time and space to make our own decisions but also being open about our whole journey.
Be your own advocate
It’s so important that women advocate for themselves in health care. I think women are belittled a lot when they bring concerns to their physicians, there is a reason that I spent months downplaying my lump. I didn’t want to be seen as someone that was getting super anxious about nothing, and even when I went to the doctor my doctor said to me: “You’re too young for breast cancer so it’s definitely not that, but we’ll get an ultrasound just to be sure”. Breast cancer happens to many young women. I didn’t know that before being diagnosed at 30, and now that I’m in that community I’m realizing that women even younger than me are getting diagnosed too. It’s important that we are heard, that our concerns are taken seriously, and that we take ourselves seriously. Sometimes I wonder; could I have been spared getting cancer at 30 if I had known, or if I had advocated for myself, or someone had advocated for me? So if you have a suspicion, get it checked out.
When I was diagnosed, somebody sent me a box filled with breast cancer ‘goodies’. I am not exaggerating; it had pens, t-shirts, mugs. stickers, pencils, erasers, dish towels, necklaces, anything you could possibly imagine that you can put a breast cancer ribbon on. I remember I opened the box… and dumped it in the trash. This was the worst time of my life, and they were trying to slap a pink ribbon on it and make it a message about women empowerment. It’s very disheartening as a cancer patient to see people promoting their products while we are totally stripped of everything that makes us feel like ourselves. The research is important, that’s why I have partnered with the American Cancer Society and done some other small campaigns with organizations of which I know their money is going towards actual research. There definitely are a lot of organizations that are doing amazing work!
I try to use my Instagram account to be a resource to women that have just been diagnosed with breast cancer, I am happy to share my story. I feel like that’s what we really need, women sharing their honest stories with each other, and empowering each other to make their own decisions. That’s what makes the difference.
Feel what you need to feel
In terms of breast cancer, the best advice I’ve gotten is to feel all of the emotions as you go through it. Don’t try and hold it all together, and don’t try to be a strong person. People often say “You’re such a fighter”, “You’re so strong” and so on. Most of the times you don’t feel that way! You feel the weakest that you have ever felt in your life. Cancer cracks you wide open to the deepest, darkest parts of yourself. When people see that you’ve been cracked wide open, and you’re bleeding all of these emotions and feelings and pain and hurt, they want to sew you back together and help you feel whole. They want to provide a sense of normalcy to comfort you. But I think sometimes what we really need is just someone to sit down beside you in the mess of all of those feelings. Just to show: “I’m here. Feel what you need to feel, think the thoughts you need to think, and I will be next to you while you go through that”. I think that that is the most powerful thing that you can do for someone walking through cancer and treatment.
Healing takes time. Some days I am okay with how I feel and look, but then when I go to put on an outfit that I used to love it might not fit the way I want to. I’m in surgically induced menopause now, which brings hot flashes, trouble sleeping, emotional instability and things like that. And then there’s the scars, it takes time to own that. Learning to live in a body that looks different and feels different is a challenge for sure. But lowering my risk of cancer, both breast and ovarian, and not having to live with that fear, that’s 100% worth it to me.
fall|winter 20 preview
In January, I presented my newest FW20 collection during a show full of dance and entertainment in Rotterdam. All my work as a feminist designer is inspired by muses, powerful female icons from past and present. And for FW20, my muse will be crime writer Agatha Christie. A few months from now, you will get to discover the collections, and see how they tell stories like Agatha’s thrilling books do..
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