Rhonda Johnson knew it was a bad sign when Dr. Rex Marco walked into the examining room carrying a skeleton.
She was right.
Johnson, a heretofore healthy, vibrant Pasadena photographer with a head of auburn hair, had been diagnosed in July 2010 with a cancerous tumor known as a sarcoma in her hip socket.
She underwent surgery, which removed most of it, and then began chemotherapy. Through it all, she chose red as her “positive energy color”: red clothes, red room decorations, even a bright-red hair extension. When the nurses told her that her exceptionally harsh chemo treatment was called the Red Devil, she said, “No, that’s not allowed.” Red meant good.
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Throughout treatment, even when her hair fell out, Johnson kept the red hair extension. Not once did she become nauseated. Instead, the other patients knew her as “The Walker” for her long marches down the hospital corridors.
But now it was January 2011, and Marco, an orthopedic oncologist at Houston Methodist Hospital, was worried the cancer would come back.
“The risk involved was going to be too great,” he said.
He arrived with the skeleton to recommend to Johnson a drastic course: an operation called a hemipelvectomy, the removal of her leg, her hip and half her pelvis. In any case, even if she decided against it, further necessary surgery on her deteriorated hip socket was going to render her right leg useless. The chance of cancer coming back was greater if she retained the leg.
“I did not cry,” Johnson, 61, says now. “I asked, ‘What do I have to do to live?’”
Ask yourself: How much of your literal, physical self would you give up to stay alive? This much? Not this much? More?
To help answer these questions, hospitals in the Texas Medical Center offer cancer patients a broad range of emotional, psychological and spiritual support. Houston Methodist has 15 chaplains and 40 social workers available around the clock. Memorial Hermann Hospital has more than 35 counselors of various kinds available to oncology patients, including social workers, chaplains and nurse navigators. Peer-to-peer counseling is less common.
In Johnson’s case, she knew what she had to do. “My leg doesn’t define who I am,” she told herself. “I have too much to live for.”
Marco, the vice chairman and chief of orthopedic oncology and reconstructive spinal surgery in the department of orthopedic surgery at Methodist, wore red scrubs for the operation, which he describes as “massive.” The surgery is rare, and few surgeons perform it. Marco does only three to five a year; about 30 are performed each year at MD Anderson.
It’s the kind of surgery that takes a lot out of the doctor, too.
But it’s not the most radical surgery he can perform. That would be a hemicorporectomy, in which the entire lower half of the body is removed. Given the choice, Marco says, few patients decide to go through with that.
Johnson pulled through and endured the reconstruction of her hip.
“She was the most amazing thing about it,” Marco says. “You can go through the worst of the worst if you’re grateful, happy and optimistic. It helps keep life in perspective.” As he speaks, a bright red cardinal lands outside his window. “That never happens,” he says.
Johnson gets around on crutches now and drives herself everywhere. She found a prosthesis to be more trouble than it was worth.
She takes delight in her 16-year marriage to Roland (whom she calls “the caretaker of all caretakers. Everybody should have a Roland.”), their blended family and their three, soon four, grandchildren.
“My trade-off is life,” Johnson says. “If I could go back, I don’t know if I would.”
The story should end here, but it doesn’t.
Enter Robyn Jackson. She is 35 and lives in Oklahoma City, the mother of five children ranging in age from 7 to 19.
She was in pain for two years straight and making repeated trips to the emergency room, where she was told she had a urinary tract infection and given more and more antibiotics. Somehow, she knew that was wrong.
“I asked the Lord, is this cancer?” she says.
After she collapsed in a store in the fall of 2013, tests revealed that she had a sarcoma at her spine. Having spent years as a certified nurse’s assistant, Jackson knew what that was.
Doctors sent her to Houston to see Marco. Her situation was even more serious than Johnson’s had been. Marco said he would have to remove three vertebrae as well as the left leg, hip and half the pelvis.
She was dumbfounded and reeling, scared and confused. Was the operation going to leave her with a life she would want?
“I had doubts in my mind,” says Jackson. “If there wasn’t life behind it, I wasn’t going to do it.”
Marco called in Johnson and asked her to talk to Jackson.
Johnson had been through the fire. She would not be speaking in the abstract.
“When Rhonda called me, I thought ‘OK, you can be happy still.’ She encouraged me and told me it would not be easy.”
When Jackson flew down alone to Houston for her surgeries, Johnson met her at the hospital and stayed with her.
Jackson developed an infection and ultimately required four surgeries and a full year to recover.
“The man up above was always with me. I was in so much peace. He gave me strength and peace to get over that,” she says now.
Marco believes Johnson made the younger woman less fearful and more hopeful.
“It becomes a matter of perspective,” he says. “It’s a big decision, and the ones who decide to do it wind up with an incredibly powerful outlook.”
Johnson acted as a mentor all along the way.
“We’re sisters from other mothers,” Jackson says. She is grateful to Johnson and Marco for seeing her through.
“Don’t get me wrong — I miss the life I had,” Jackson says. “But I enjoy life now.”
She gets around in a wheelchair — she hopes to graduate to crutches soon — and last month saw her oldest son graduate from high school. She watches the younger ones play football, and she’s grateful to be part of her children’s lives. That’s what she lives for.
“God works his miracles through people,” she says.