A Vlog Lifeline — A Wildfire Story
The waiting room of my breast surgeon’s office was particularly packed that sunny April morning in 2018. (Something you rarely, if ever, see in the post-Covid-19 era.) Women in hospital gowns surrounded my sister and I, anxiously awaiting test results or getting mentally prepared to have their breasts compressed for imagining in the notoriously indelicate mammogram machine. It had been two weeks since my double mastectomy to remove the cancerous mass in my right breast and today I would receive the pathology results. My sister had flown to Toronto from Rhode Island to accompany me to the appointment. My husband is amazing but my sister, my best friend and a new mom herself (our babies are only six months apart), was the one I needed clutching my hand as the doctor delivered the final results. “Sa, we are getting a manicure after this. Your nails are weapons,” she said as I dug deeply into her palm with my sharp talons. I smiled. I was so glad she was there.
Finally, my name was called and we followed the doctor, who turned to us while walking to quickly reveal, “I have good news.” Seconds later we were sitting in the exam room while he relayed that the cancer was slow growing, Stage I, invasive ductal carcinoma, strongly ER and PR positive and HER2 negative and there was no lymph node involvement. “I’m going to refer you to a medical oncologist and you probably won’t even need chemo… just have to take a pill for the next five years or so. This is a great outcome,“ A statement he repeated several times throughout the conversation. My sister and I went to celebrate at my favorite bar in downtown Toronto, where the manager upon hearing our news, comped us our lunch and drinks. It was a good day for sure, but I couldn’t ignore the fact that I wasn’t more relieved. I had hoped the appointment today would give me closure and in a sense it did, but in another I realized that my breast cancer journey wasn’t over.
A week later my husband and I were once again back at the hospital to meet the oncologist. We talked about chemo, which she was confident I wouldn’t need but still recommended sending a sample of my tumor off for Oncotype testing. This test helps determine the likelihood of my cancer recurring and how effective chemo would be in actually reducing that rate of recurrence. She also suggested I consider ovarian suppression which would involve monthly abdominal injections with a very large needle of a specialized medication that would put me into menopause. “In addition you would take a daily pill to help eliminate any remaining estrogen. We need to shut down the source of the tumor which in your case is estrogen.” Menopause? At 41? Was this really necessary? And what would the side effects of this be? Oh my god, would I grow a beard like my friend Hillary’s mom when she went through “the change?” And what about weight gain? “Well, there would be some side effects but everyone reacts differently. In terms of sexual side effects,” she turned to my husband, ”it may be that Sarah is not as interested in sex but please don’t take it personally. These medications will take some getting used to.” Are you kidding? Would I even feel like a woman anymore? Fake boobs, infertility and zero sex drive, but cancer-free. Well, hopefully.
“So, that went well I think,” my husband said on the drive home from the appointment.
“Did you not hear her? Menopause, injections, daily pills and chemo isn’t even officially off the table.”
“Sassy, don’t worry, there’s no way you will need chemo.” I’m sorry, my love, I didn’t realize having a degree in Political Science meant you were also a medical doctor.
“And as for everything else,” he continued, “you have no idea how you will react on the pills and stuff. Let’s just take one thing at a time. I love you. We’ll get through this.” Oh we will? I turned up the volume on the radio. But then he started talking about the upcoming weekend and us going for a bike ride with our now 1-year-old. Read the room, honey. I was in no mood to resume normal conversation. All I wanted was to get home and Google everything the doctor had mentioned; my only company Friends episodes playing in the background.
At my next oncology appointment I came armed with online research, prepared to make a case for not needing to be put into early menopause. All that went out the window when I heard my Oncotype test results. The test assigns a number from 0 to 100 on how likely your breast cancer is to return. At my last appointment, my doctor was certain I would receive a low range score but my score of 20, fell in the low-intermediate range.
“I was surprised too, Sarah,” my oncologist said, “I really thought it was going to be lower but breast cancer is unpredictable that way. I still believe you don’t need chemo but the choice is ultimately up to you.” I started crying, the first really hysterical cry since being diagnosed. I had great doctors, a supportive husband and the most incredible family and friends, but at that moment I felt completely and utterly alone.
A few days later I went to New York City (my home before moving to Toronto several years ago) to get a second opinion from a top doctor there. I wanted to capture what I was feeling so using my iPhone filmed myself before the appointment full of hope and excitement and then after, sitting on the steps in my old New York City neighborhood, tears in my eyes, discouraged that even this top doctor couldn’t definitively tell me that my cancer wouldn’t return. My oncologist had told me about an organization called Rethink Breast Cancer, geared toward younger women dealing with all stages of breast cancer. I sent those very raw videos to Rethink and they immediately reached out and we created a vlog, called First Baby, Then Breast Cancer, chronicling my journey. It gave me the platform to share the intimacies of treatment, including side effects, follow-up tests and daily (sometimes hourly) concerns about my breast cancer coming back. Women reached out to me through the vlog, sharing similar stories about being diagnosed while trying to raise young children at home or looking for support as they were deciding on treatment plans. And when my husband and I started thinking about growing our family via surrogacy, it was this precious community that answered my questions at all hours of the night, providing endless and unconditional support. My mother in law, with whom we lived and I absolutely adored, would see me on my phone filming content or up late texting with my new confidantes and shake her head, “You need to move on from this, honey. Stop with all this cancer stuff. You’re healthy now. Just enjoy your life.” While I knew she meant well, I quickly reminded her that I loved connecting with friends in the breast cancer community and their support is what’s allowing me to enjoy my life, now. Daily conversations with fellow survivors and thrivers restores hope, providing guidance, that even when the worst case scenario presents itself, you have an army of warriors at your fingertips, ready to help you navigate life ahead.
Sarah DiMuro — Actor and writer. Diagnosed at 41. IDC, Stage I, ER+, PR+. Sarah was diagnosed with breast cancer in 2018 when her first child was only 9 ½ months old. The treatment prevented her from being able to carry another baby but with the help of a gestational surrogate, she and her husband welcomed their second son in May of 2020. Sarah has written lots about her experiences with breast cancer and surrogacy, appreciating any opportunity to share her story. When not busy chasing her two kiddos around, Sarah can be found binge watching The Golden Girls, Frasier or Friends and stalking Pembroke Welsh Corgi owners in her Toronto neighborhood. • @sarahdimurowrites
This piece has been republished with permission from WILDFIRE Magazine, the “Community” issue, published originally August 14, 2021. More information available at wildfirecommunity.org
WILDFIRE Magazine is the only magazine for young women survivors and fighters of breast cancer under 45 years old. Headquartered in Santa Cruz, California, WILDFIRE is a beautiful, story-based bi-monthly magazine published on different themes relevant to young women survivors, from stage 0 to stage IV. Beautiful and ad-free! Visit wildfirecommunity.org for more info.