Stories By Wildfire: Ticking Time Bomb
Illustration titled l. Lady by Melanie Penn. Essay By Shana Rains
“Have children, then have a mastectomy because you will have cancer by 25.”
At 21 years old, the weight of my mom’s oncologists’ words were too heavy for me to comprehend. I was a senior in college. How in the hell could these doctors know I was going to have cancer? I felt like they were trying to scare me, but I was already scared. During this conversation, my mom was just feet away in her hospital bed dying of breast cancer. Until this moment, I had no idea breast cancer could be genetic and there was no way I was going to change my plans for the future because a few doctors said so. Looking back, this is my biggest regret.
My mom was just 37 when she found the small lump in her right breast. Thinking it was nothing, she ignored it until it became sore. The rest was a whirlwind: the mammogram led to the biopsy, and once the diagnosis of Stage I Inflammatory Breast Cancer was given, she decided to have a double mastectomy right away. My brother was seven, my sister five; she didn’t want to deal with chemo, radiation, the chance of recurrence. “I just want to get it done with; I don’t want to worry or be sick,” she said. So that’s what she did, a double mastectomy and she was done.
The surgeon told us proudly he had found no disease in her lymph nodes. “We got it all,” he told us. For four years she lived her life with more joy, appreciation, and laughter than she ever had. She was still sick and in pain, though, with fibromyalgia which she’d been diagnosed with a couple years prior to breast cancer. This was in 2007 and hardly anyone had heard of fibromyalgia. We assumed her continued pain and fatigue were because of her chronic illness. Then one day, she urinated black fluid and was in too much pain to walk. We learned then that her cancer had metastasized to her brain, liver, lungs, kidneys… she even had a tumor in her arm. That was the day after Thanksgiving. She made it to January 3rd and was gone.
When she died, I set a timeline for myself: I would heed her oncologists’ advise to me, but I had time. Mom was 37 at the time of her diagnosis, so I set my deadline for 35. I would do all surgeries, just not by 25 as they suggested. I went on with life the best I could after losing my mom. I continued school and found a partner. Although I didn’t have a prophylactic mastectomy, I did diligent self-exams. After my mom’s death I felt like there was a bomb inside me just waiting to explode. I was 26 when I found the lump.
The lump led to a diagnosis of Stage IIIb IDC. I was tested for BRCA, but I tested negative. Then I was sent to a geneticist who expressed a belief that I do carry a genetic mutation that has not yet been discovered. Hearing these words changed my life. I knew immediately that I wouldn’t have children. Personally, I felt I could not risk passing this mutation on. I was devastated but as it turns out the choice was never mine to make. My ovaries didn’t make it through cancer treatment. It has taken years for me to able to talk or write about my infertility, but I’ve now accepted it.
It’s terrifying knowing I am walking around with a gene mutation that almost killed me once already. I worry constantly about recurrence or a new primary cancer. I am afraid to plan too far into the future knowing every day I get closer to my mom’s age. Having a genetic mutation, knowing my body won’t fight cancer cells, is terrifying. I’m afraid of leaving people behind like mom left me. It’s taken five years for my girlfriend to convince me love is worth the risk, that I’m worth the risk. Although her love has been the most beautiful thing I have known since the death of my mom, in the back of my mind, I still hear the ticking time bomb.
Shana Rains. Diagnosed at 26. Stage IIIb, IDC, ER+. Shana is a survivor and lives with Complex Regional Pain Syndrome. A breast cancer advocate since she lost her mom to the disease in 2007, Shana has undergone 30+ cancer related surgeries, with a few still to go. She is a true crime enthusiast, theater and art junkie, and music lover. She is happily building a life with her partner, Danielle. They have several fur babies and are planning on adding a human baby soon! Follow her: @and.she.thrived
Editor’s Note: This piece has been republished with permission from WILDFIRE Magazine, the “GENETICS” issue (Vol 4, No 1, Copyright (c) February 2019 by Wildfire Community LLC). 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.