The Joy and Pain of Having Breasties
Photography by Emily D Photography
Rethink is honoured to be the guest editor for Wildfire Magazine’s Identity and Aftermath August issue, which is dedicated to highlighting the struggles of life after cancer diagnosis.
Here is Rhea’s story.
After my first chemotherapy session, I found myself at the hospital on a cold February night in a conference room at a workshop intended to help women look their best while facing cancer. I arrived with my mother with my new mohawk-inspired hairstyle. At 38, I was hardly the typical breast cancer patient. This was reinforced immediately by the workshop leader, who attempted to lead my mother to a make-up chair assuming she was the patient. I took the seat and was met with looks of pity and sadness. I averted their gaze until my attention was drawn to the door. Another woman had just arrived. She looked to be in the her 30’s with closely cropped hair, striking cheek bones, kind eyes and a beautiful smile.
She sat next to me and we immediately started talking. She laughed and said, “I know this sounds terrible but I was just so happy to not be the youngest one here.” We walked out together and exchanged numbers, having talked through almost the entire workshop. We had many things in common: she had two young children just like me, a boy and girl; she lived within 20 minutes of my house; we were both in our 30s and, of course, we both had breast cancer.
Our treatment consisted of eight rounds of biweekly chemotherapy, followed by 24 rounds of radiation and 18 rounds of immunotherapy. We were on the exact same schedule, receiving each of our chemo doses only days apart at different hospitals. We began texting each other at all hours of the night when steroids and worry consumed us. We shared what our doctors said, what we were afraid of, practical tips for side effects, the latest research on treatment. We spoke at length about deeply personal things, like what it felt like to be diagnosed while still breastfeeding our children. What it was like to know that we would never be able to have another child again. How long we might live. We sent each other all manner of colourful pictures: blackened, brittle nails from Taxol, purple post-surgical bruising, urine red with Adriamycin or blue with radioactive dye. Between the two of us, she was always the more positive, unwavering in her commitment to stay as hopeful as possible. When I got too dark, she reeled me in. I shared more with her than I shared with my closest friends and family because she just got it. No explanations. No platitudes.
I texted Michelle before I called my mother to tell her my one-year biopsy was clear. She called me from her car when she found out that chemotherapy had rendered her cancer undetectable. We ugly cried on the phone together.
Together, we negotiated the post-cancer landscape or “new normal,” as the doctors call it. But there was nothing normal about being fraught with long-term physical side effects that ran the gamut from life-altering fatigue, difficulties with memory and attention, joint and bone pain, muscle loss, nerve damage, mobility issues and sexual dysfunction. These paled in comparison to the crippling emotional side effects: depression, anxiety, post-traumatic stress disorder and an overwhelming fear of recurrence. The list of problems was lengthy and the resources for young women were few and far between, but we were both hopeful that things would get better.
Michelle moved a few hours away that summer but we kept in touch over the next year, texting to check in, especially during anxiety-inducing scan times. In late October of last year, just two months shy of her two-year scans, Michelle told me that the cancer that they told her she had beat had spread to her brain. Her treatment would start immediately with surgery, followed by radiation applied with surgical precision to her newly discovered multiple tumours.
I screamed. I cried. I shook my head in disbelief. I sent out all the positive energy I could, hoping it would make it to her. I felt helpless, I felt guilty and I felt an indescribable sadness.
I texted her every week, knowing that it would be difficult for her to respond but wanting her to know that I was there to listen and help in any way I could. In March, when I texted her to check in with how treatment was going in the midst of a global pandemic, she delivered her latest news: the tumours had spread to the lining of her brain near her spine. Without treatment, she had 3-6 weeks to live; with treatment she would be lucky to get six months.
We call ourselves “breasties.” It is the name given to women who have had breast cancer and have formed powerful, deep friendships because of it. There are communities of us online. Many of us live in different countries or different provinces, but bonds forged by trauma transcend time and space. The bond is so immediate and intimate that it can become very personal, very quickly. I remember once talking to a woman about when she could expect to get her period back after chemotherapy in the span of an elevator ride. I never learned her name and I never saw her again. It may seem strange, but in a way, it makes perfect sense. The loneliness and isolation of being a young person with cancer is one of the most difficult things to deal with. Some of us have a partner, some of us do not, some of us have a career, some of us not so much. Some of us have young children and some have had that possibility stolen away by cancer. All of us were in the prime of our lives, hitting our stride, on the right path, finally figuring it out, when the rug was pulled out from under us. All of us have had things done to our bodies that have left us emotionally and physically scarred. All of us have lost body parts or body function, friends, family, confidence in our physical appearance, career opportunities, financial security. All of us have had to face our own mortality at a time when we felt invincible. The understanding that someone who has walked the same path as you can offer is unparalleled. There is only one problem: my friends are dying.
When I read the posts about their passing, there is heartbreak and grief, complicated by feelings of profound guilt that I have survived. I feel the responsibility to make the most of every moment I have but also the fear that their story may soon be my story.
My oncologist recently asked me if I had ever thought about distancing myself from young adult cancer communities, suggesting the emotional toll was too great. I have thought about this move towards self-protection many times, but it is not something I can do. I feel an immense sense of responsibility and empathy for those young people who often have no one to turn to. I turned to them in my time of need and it is my job to pay it forward; to offer comfort and support in any way that I can. Perhaps my suffering could help someone suffer just a little less. I want to be the witness to their journey, in the way that I want them to witness mine. If the worst comes to pass, I want to be able to honour their too-short lives and to let their grieving family members know that their loved one was important. That even in their most difficult times, they were beautiful, accomplished and amazing people. I think about the ones we have lost often, Teva, Jenn, Nadine, Jasmin, Kate, Christa, Elizabeth, Julie, to remind myself that life is precious, that another day is a gift, not a guarantee. So, for now, I stay. I stay because it is important. I stay because it is necessary. I stay for them. I stay for me. – Rhea Sengupta