In November 2009, Stephanie Regalado-Hertel, a Spokane mother and writer, found out she had inherited the BRCA1 gene mutation from her mother, predisposing her to a high risk of ovarian and breast cancer. Here, in her own words, she shares her journey through the last two years since learning the news.
August 12, 2009
Mom called from the hospital this morning. Abdominal pain raised fear her ovarian cancer had returned. Her long, deep breaths carried the news her cancer had returned before she spoke. That same evening she called in a panic: Aunt Val, mom’s baby sister, who had been battling ovarian cancer for a year, was being taken by ambulance to the hospital, unconscious. I rushed to Aunt Val’s bedside in time to hold the phone to her ear so mom could tell her how much she loved her. I kissed her forehead one last time, and said goodbye.
Garrin and I wait for the genetics counselor to break the news. My BRCA gene test results are in. I think of my girls, Isabella and London. If I don’t have it, the worry is over. If I have it, they may have inherited it from me.
December 15, 2009
My first appointment as a confirmed BRCA1 carrier. More are scheduled for abdominal ultrasounds and the breast cancer screening extravaganza (mammogram, ultrasound, MRI). I’ll be celebrating my 37th birthday in February. My grandmother died of ovarian cancer when she was 38, leaving nine young children motherless. Garrin and I have been discussing our future: our July wedding, blending families, possibly having a baby. My doctor recommends adoption or a surrogate. If I wait even a year, she says, I will be “playing with my life.”
I visit the gamut of specialists in breast and ovarian care. After vaginal ultrasounds, breast biopsies and CA125 blood tests, it’s determined my cells haven’t turned cancerous. Prophylactic double mastectomy with reconstruction and a complete hysterectomy/oophorectomy (uterus, tubes, ovaries), as soon as possible, is the recommended course of action.
Garrin and I have been seeing a counselor to develop a strategic plan to share our baby news with family and friends. At 14 weeks along, the fatigue and nausea are letting up. On the eve of sharing the news, I wake to cramping, bleeding and then hemorrhaging. A visit to the ER and a D&C ends our baby dreams. We grieve for weeks because our year is up, and we are now “playing with my life.”
Stoplights have become my nemesis, allowing just enough time for my “nerves” to climb up into my throat and choke me up. After months of negotiating with a variety of doctors, my hysterectomy/oophorectomy is scheduled for September 26. I’m scared. Not of cancer. But of what life will be like without my ovaries. Will my emotions swing wildly? Will I be grumpy, weepy, cold-hearted?
September 26, 2011
I feel people moving the air around me. I try to wake up, bring it all a little closer. I need to know what time it is, if surgery is over, if it was successful, and if I’m OK. I ask if my ovaries are gone. Yes, they are gone. I burst into tears. Later, as I come out of anesthesia, I lay still, quiet, eyes wide, waiting to detect the most minuscule change in my person.
Day 3 Post-Op
When I’m not sleeping, I’m grieving. I cry occasionally. I’m happy it’s over. I’m sad it’s over. I’m waiting to feel different. I’m surprised when I don’t.
Day 8 Post-Op, 3am
Hot. I’m so hot. I can’t breathe. I don’t know where I am. I fight to free myself from the weighted blankets trapping me in a puddle of sweat. My first case of night sweats.
Day 10 Post-Op
My two youngest kiddos are embarking on an overnight school trip to WSU in Pullman and I decide to go. I invite my mom along for the adventure. My body is adjusting to the hormone patch, and I’m a bit emotional. I hold it together until the Swine Facility tour. One of the piglets is injured and doesn’t appear as though it will survive. I visualize scooping up the piglet and rushing it away to be nursed back to health. I stand there and cry instead. “Oh, they don’t have your hormone levels right,” says Mom. “You’ll need to tell your doctor about this.”
October 4, 2011
My post-op appointment goes well. Pathology reports say everything “looked perfect,” says the doctor. Big sigh. My emotions seem to have stabilized, and I’ll need to “keep track” of the night sweats. I’m considered a previvor: a survivor of a predisposition to ovarian cancer. I’ll continue to be monitored every year, as a precaution. My breasts will be monitored by mammogram or MRI every six months for the rest of my life, or until I decide to have a prophylactic mastectomy.
October 15, 2011
The sun is shining, suiting my outlook. I am happy to bop out of the house to my son’s football game. His team is wearing pink on their helmets today, in honor of breast cancer awareness. It makes me smile in a way I haven’t before.
Stephanie’s mom, Debbie, continues to fight the battle as she discovers new health challenges, having lived longer than other women in her family. She has survived ovarian cancer, peritoneal cancer and thyroid cancer. Stephanie’s daughters, Isabella and London, understand they may have inherited BRCA1. Despite the news, they are enjoying life.
BRCA carriers have as much as an 87 percent chance of developing breast cancer and as much as a 50 percent chance of developing ovarian cancer.
There are said to be more than 1 million BRCA carriers in the United States. Only 10 percent know they have the gene.