There’s something about that little girl diagnosed with leukemia so many years ago who still lingers in the essence of 38-year-old Rachael Causey: in her round brown eyes, her petite frame, her sweet voice and her youthful positivity.
Maybe the diagnosis and triumphant battle when she was just 5 prepared her for the grueling battle today, this one with breast cancer that has spread to her brain, bones and liver. She has fought this demon for 11 years now.
Think she’s given up?
She sits in her Mount Pleasant townhouse, sunshine streaming in through a window, her head wrapped in a deep blue scarf, an elegant gold breast cancer pin on her shirt, and tells her story.
It’s one of a journey guided by medicine, faith and an optimist’s spirit.
When she was just 5, Causey was diagnosed with acute myeloblastic leukemia, a leukemia of the white blood cells.
The little girl from Estill came to MUSC to undergo full-body radiation and chemotherapy for three weeks.
Then her family received good news: Her older sister, Rebecca, was a perfect bone marrow donor match.
In 1979, they flew to the University of Minnesota, where the young sisters underwent the then-cutting-edge procedure. If the transplant didn’t work, Causey’s life would be in danger.
Causey still remembers her hospital room. The tiny Lowcountry native could see mounds of sparkling white snow outside a small window. A nurse got her a bucketful.
Her family spent six weeks at a Ronald McDonald House during the procedure. Later, Causey’s mother, Julia, helped lead efforts to create Charleston’s Ronald McDonald House, which opened in 1983 to offer a home away from home for families whose children were receiving medical care at nearby hospitals.
The cute little girl with dark brown hair and a smocked dress smiling in black-and-white photos taken a year later appeared wonderfully healthy.
Indeed, she was.
Her cancer gone, Causey’s life then filled with cheerleading, playing basketball, swimming and friends. She lived a normal childhood and went on to the University of South Carolina.
After two years, she returned to Charleston and worked as a nanny, which helped fill the void of knowing that her childhood treatments left her infertile. Then she went to MUSC, where she worked with insurance.
Yet she was sheltered by a family wanting to protect her.
Nobody warned Causey that due to the full-body radiation she had received, she would be at higher risk of developing other forms of cancer later in life.
That’s why, 23 years later, she never thought of cancer when she noticed a spot of blood on her shirt.
Causey was 28, attending a friend’s beach wedding in 2002, when she noticed the blood.
When she had a chance to look closer, she realized it was discharge from her nipple.
She went to her doctor and received her first mammogram.
The diagnosis: invasive ductal cancer. It crushed Causey. Her father had died several months earlier after a battle with lung disease likely due to smoking. And suddenly, Causey faced another fight against cancer. She underwent a left-side mastectomy.
While her prognosis looked good, she fumed. After everything she’d been through as a child, how dare God let her get cancer again?
After surgery and treatments, she once more appeared cancer-free. Still, the possibility of cancer reoccurring in her body lingered and sneered from the shadows of her daily life.
Would it return?
“It’s not good”
In 2006, at the suggestion of her doctor, Causey decided to undergo surgery to remove her ovaries and right breast as a precaution against the cancer returning. She already could not have biological children of her own. She’d been married briefly but no longer was.
“It really wasn’t a difficult decision,” she recalls.
However, a few months after her reconstructive breast surgery, she felt a pencil eraser-size lump just under the surface of her left breast.
When she went to her doctor, he performed a needle biopsy on the spot.
“It’s not good, is it?” she asked.
“No, it’s not good. It looks like cancer,” she recalls him saying.
She underwent surgery yet again on Dec. 7, her birthday. This time, she felt more positive.
“I felt like at that point, I would be fine,” Causey says.
After all, she had just taken a new position at work. She felt physically decent. And she again appeared cancer-free.
When cancer spreads
Cancer treatment follow-ups often include periodic imaging scans. For cancer patients, they become part of life, a routine reminder of the battle they’ve fought, and the risks that remain.
In 2008, a scan showed that Causey’s breast cancer had returned, this time in her liver and possibly bone. This time, surgery wasn’t an option.
She began a regimen of chemotherapy that would take her from drug to drug to drug.
Then in 2010, she fainted while vacuuming. At work, she noticed vision problems. Cancer had invaded her brain.
A year later, it had spread more widely in her brain. Radiation left her at 75 pounds and dehydrated. She left work and went to live with her cousin for a few weeks.
But she did not give up.
“I’ve said 1,500 times that I am going to throw in the towel,” Causey says. “Of course, I am scared and terrified. But I’ll be fine.”
She’s known her oncologist, Dr. Frank Brescia, for 11 years now. He nicknamed her Not the Norm.
“I’m not the average textbook patient,” she says, grinning widely.
“Despite advanced disease, she has continued to look and function well,” Brescia said. “She has had all kinds of serious medical problems ... yet has managed to deal and beat the odds. She has had a terrific attitude in dealing with all of this.”
She recalls a different doctor who went through the litany of chemo drugs Causey had taken by that time — as if nothing were left.
“Death is not a word in my vocabulary,” Causey told her. “You are not going to send me home to die.”
She’s remained independent and has lived alone throughout her ordeal with the help of a close cousin and what she calls her “homegrown girlfriends.” As she tells her story, her latest family addition, two 6-month-old cats, wrestle over the carpeted floor of her townhouse.
She is very thin, and several of her bones compromised, but she feels physically well today. She recently underwent a procedure that sent chemotherapy directly to certain spots in her brain. She takes a pill form of chemotherapy and is able to enjoy days filled with normal activities and friends.
For a long time, she blamed herself for the ordeal. She must have gotten cancer at such a young age because she hadn’t been a good enough person. Why else would she deserve this?
She credits the support of her church, St. James Episcopal on James Island, and the Rev. Arthur Jenkins for helping her realize otherwise. Instead, she now wonders if God chose her because she’s a fighter.
“I cannot worry like that,” she said. “When it’s my time, it will be my time. I don’t know when it’s going to happen. So I get up every morning and thank the Lord that I have another day.”
She used to think about death all of the time. She’d watch her tumor markers, obsessing over every rise and fall. She no longer does.
Now, she recommends that all people, regardless of their life’s hurdles, read “The Power of Positive Thinking” by Norman Vincent Peale.
At 38, she knows that one day her fight will end. But while she’s here, she stresses to those around her that despite life’s hurdles, “Don’t let anything get you.”
Rachael Causey (right) was diagnosed with leukemia at age 5. Her older sister, Rebecca, donated bone marrow, allowing Rachael to live cancer-free for 23 years.×
Rachael Causey with her mother, Julia, (above) worked to help create the Charleston Ronald McDonald House.×
Rachel Causey is still fighting her cancer battle.×