BEFORE THE CANCER, THERE WAS CHRISTMASTIME.
Dr. Deanna Duncan prepares to undergo a CT/PET scan at Parkridge Hospital to monitor the progress of her chemotherapy and radiation treatments.
There was convincing her curly-headed 7-year-old son for one more year that Santa Claus existed. There was Amazon shopping for her husband, Terry Cannon, and hopes of sledding on the pillowy white hills if it snowed.
And there was her work, her hospice, the hospice she dreamed to open and almost didn’t. There was the nice new sign outside her office building on Rossville Avenue and the excited staff. There was the sense that at age 43 she had finally — after years of toil and worry — arrived.
Deanna Duncan hadn’t planned to have her breasts flattened and analyzed that day. But the doctor she was meeting with about hospice research had the mammogram machine in his office and she was overdue for a checkup. She joked with him about it. It was funny, how good she was at multitasking, how busy she could keep herself and waste not a minute.
Her life was a list: Mammogram — check.
The airiness of the moment seems absurd now.
There was a spot inside her, a troubling spot. And in the next days, a flurry of tests would show that cancer had been creeping through her body and gnawing her bones. What she thought had been routine back pain was actually compound fractures, little pieces of her spine disintegrating, giving in to the disease.
The first scan of her body lit like a Christmas tree.
She had seen the patterns before, in her patients, not long before they were gone. She was a hospice doctor, after all. So she didn’t ask about the stage of her cancer. She didn’t want to know. She didn’t want to know how long she had left. Denial is essential to survive. Denial is essential to survive, she told herself.
But Terry wanted to know, and the doctor told him.
There were just months left.
Deanna had seen thousands of people live and die with cancer: losing hair, vomiting, waiting for the disease to travel to the bone, the lungs, the liver and the brain, struggling with unbearable nausea from chemo treatments, fighting with insurance companies and fading, just fading away. Deanna just never thought she would be among them.
For 14 years she stood beside the dying, making sure their medications were right, making sure they were comfortable, making sure their families understood what was happening to them, watching their eyes slide shut.
She was different from other doctors, nurses would say. She knew how to talk, how to calm, how to ease. She knew how to gently walk a person to the doors of death. She knew how to convince them of the value of these weeks or months before the final sleep.
She said it was her calling, her reason for living. And anyone who truly knew her would tell you that she was the type of person who, once she decided something, was shackled to that decision.
Her husband would say nothing could ever, ever hold her back. When a roadblock set against her, she broke through it. She never stopped.
Then in a dark December something came along that she couldn’t control. The reality of her own death lay before her, unmovable and inevitable.
Deanna's husband, Terry Cannon, cradles her head as they see the results in her PET/CT scan.
In 1986, Deanna was the youngest and tallest girl to ever win the Tennessee Junior Miss Pageant. A newspaper clipping from that year showed the nearly 6-foot-tall 16-year-old in a cowl-neck sweater with perm curls framing her face.
She was the girl parents wanted their girls to be like. Confident. Funny. Assertive. Beautiful. She was a self-taught pianist, student body president, news editor of her high school’s student newspaper and a basketball player.
Most didn’t know that she came home from school most days to an empty house. Her parents’ long work shifts left her and her brother to fend for themselves. At 6 p.m. she let herself into the house, made dinner and finished her homework unprodded. The loneliness, she said, planted some ferocious desire to make something of herself, to get away.
When she went off to the University of Alabama on a full scholarship she told everyone she wanted to study international law, but she ended up in medical school, the pride of Red Bank.
At the time she studied medicine, few people were going into the field of palliative care, an area of medicine that focused on easing the suffering of those with chronic illness. A hospice specialization was also rare.
Still, Deanna was drawn to the elderly, those in their second childhood.
So after medical school she took a position as a general practice doctor in Sale Creek where she became popular among the elderly arthritic and dementia burdened.
Dr. Duncan was a sweet smile when a person had the flu or shingles. She sharpened her basic knowledge there, but wanted more for her practice. A five-minute snippet with a patient wasn’t enough.
Terry told her to make a list of all that she wanted in a job and to pray. Deanna made the list and told Terry to pray for her.
Soon a call came. Hospice of Tennessee wanted to recruit her to be their medical director. Terry’s prayers were answers.
She said yes.
Deanna calls her husband, who had to leave to pick up their children, from the lobby after a chemotherapy treatment session.
Hospice work was important, she came to believe. The U.S. health care system was spending too much money “torturing old people,” she would say, prolonging painful and invasive treatments that didn’t delay the inevitable.
For the terminal, entering into death should be a graceful process, a dance, not a messy, rushed, costly marathon of suffering.
People needed an accessible and kind physician. They needed counseling. They needed doctors who could stave off the symptoms of approaching death. They needed to be in their homes with their families beside them, not for days but for months, she would say.
She worked at Hospice of Tennessee for four years and then took a job at the largest hospice in the region, Hospice of Chattanooga, where she started as a physician and later was promoted to medical director.
Hospice of Chattanooga was where she came to love end-of-life care, but after seven years she became disillusioned. Sometimes it felt like a factory, she said. The hospice was nonprofit, but in her view, executives cared about profit as much as a for-profit hospice would, and she didn’t like all the emphasis on cost and savings. She wanted patients to have more time, more care, not less.
She liked to do the work of a doctor, but she also wanted to help the dying deal with their feuding children, decide on a sitter, find mental health care and plan for the final hours.
If they wanted to go to a Lookouts baseball game, she wanted to take them. If they wanted a strawberry milkshake, she wanted to be the one to bring it.
Still, executives warned of belt tightening, she said.
So, after a series of tense contract negotiations, Deanna left Hospice of Chattanooga bitter but with determination to start her own hospice.
She wanted to build a hospice directed by physicians, not businessmen, where physicians, not nurses, mostly cared for patients. With Medicare paying only $151 per day per patient, she knew her profit margins would be thin, but she didn’t care.
Hospice of Chattanooga publicly fought her at every turn. When she applied to open her business, they told state officials that her hospice wasn’t needed. They lied, telling doctors she was from out of town, documents show. They hired lawyers to fight her application.
But Deanna’s reputation saved her.
IF THEY WANTED TO GO TO A LOOKOUTS BASEBALL GAME,
SHE WANTED TO TAKE THEM. IF THEY WANTED A STRAWBERRY MILKSHAKE, SHE WANTED TO BE THE ONE TO BRING IT.
More than 150 people wrote letters to the state in support of her hospice proposal. Only a handful of letters were written in opposition. Doctors who had worked with her talked about her skill. Children of patients she had cared for wrote about her tenderness. Many complained about poor service by Hospice of Chattanooga, delays for medicine, sparse visits, unavailable staff.
“We need a new hospice run by a caring doctor,” wrote Doris Wood, whose sister-in-law’s mother was cared for by Hospice of Chattanooga.
“My dear friend was recently under the care of Hospice of Chattanooga. She was left crying and moaning in pain for eight hours while waiting for comfort medications to be delivered,” wrote Ginny Myers.
“I find it disturbing that significant resources appear to be going toward opposing this qualified, dedicated physician. … [Deanna] has the unique talent to cut through the technical stuff and get to your heart,” wrote Irv Ginsburg.
The president of EPB wrote a letter. U.S. Sen. Bob Corker wrote a letter.
And in the end, Deanna won. The Health Facilities Commission voted 7-3 in her favor.
The certificate of need was approved in July 2012 and the doors for Hearth, her name for the new enterprise, opened that October.
Hospice of Chattanooga would be nine times her size, but she had dreams to grow.
Deanna waits with her husband, Terry, in the lobby for the results of a CT/PET scan.
THE NEWS SPREAD FAST.
DEANNA DUNCAN HAS CANCER.
“Oh, my God,” people would say in shock. Not Deanna. How long does she have?
We don’t know, Terry would answer.
But she seems so healthy. But what about her hospice? Will it close? Will it be sold?
Her phone was filled with voice messages and texts. Many went unanswered. A breast cancer survivor called from Miami. “You don’t count how old the boys would be. That is against the rules,” she told Deanna.
People poured out their sympathy on Facebook. The week of her diagnosis, some friends came to her house midway up Signal Mountain and threw her a party. It was an act of defiance against the cancer. Perhaps cancer expected them to cry, but they only wanted to celebrate Deanna. They wrote sweet notes on cards that she didn’t read and hugged her tight. They promised to do whatever they could to help. Food was left on the front porch. Terry had to buy an extra freezer to hold all the casseroles.
Deanna and Terry talked about pulling the kids — Duncan, 10, and Preston, 7 — out of school. They asked the school counselor to spend special time with her two boys.
The boys wondered why they were getting so much special attention, why other parents looked at them with sad eyes, why they said things like, “Tell your mom we are thinking about her.”
Terry pulled the boys in close and told them that their mother was sick. She had cancer, he said. But the youngest didn’t know what that meant.
“Are you going to die?” Preston said. “Will I be able to talk to you if you are dead? Will I be able to hug you?”
Eventually the older brother, Duncan, would show the level-headed sense of his mother.
“It’s OK,” Duncan would say. “Everybody dies.”
Dr. Joe Busch greets Deanna as she prepares to undergo a CT/PET scan.
She drove to Vanderbilt University Hospital to meet with a specialist who advised her to try a newly approved form of highly toxic but targeted chemotherapy that wouldn’t make her lose her hair. The insurance company didn’t want to pay for it, but Deanna fought and won. Terry laughed, as if anything could stand in her way.
And she talked to her staff at Hearth Hospice. Without crying she explained that nothing would change, that everything would be fine, but she would be pulling away. She hired a business transition expert to help the staff work through the change. So Hearth printed new promotional material without her pictures on it. Another doctor was appointed to take her place.
Her brother moved from Seattle to live in her family’s house on Signal Mountain.
A friend, an attorney, flew in from Boston to help them get the estate in order. They riffled through the cluttered office. Looked at how much was owed on the house. Looked at the real estate they owned downtown. They talked about selling a building. They would need the money.
There were mornings when she drank a smoothie and felt fine. There were mornings when she rushed to vomit in the kitchen sink.
She tried not to think about the pain in her hip and back, the dull ache that forced her to limp and sit down to get dressed.
Cancer just became a part of her, absorbed and endured.
THERE WERE MORNINGS WHEN SHE DRANK A SMOOTHIE
AND FELT FINE. THERE WERE MORNINGS WHEN SHE
RUSHED TO VOMIT IN THE KITCHEN SINK.
During the day, when the sunlight lit the valley outside her window, giving a perfect picture of the twisting Tennessee River and the city entangled with it, she felt something close to peace.
Terry kept the fire going, lugging wood from the basement. Deanna burned candles, loving the dancing flames with their warmth and movement.
At the boys’ basketball games she sat courtside and cheered. She soaked up every movement, the way Preston dribbled the ball and nudged his glasses up his nose to see before he shot, the way Duncan teased his little brother.
“I have to yell because Preston accuses me of not seeing him,” Deanna explained to her mother-in-law, sitting in the seat next to her.
But at night she would turn inward. The boys slept in the bed with her and Terry, and she cradled them as if the moments were slipping away. Her tears would fall on their shoulders and back, and Terry would listen in silence.
“Why are you crying?” Preston asked one night, searching her face for an answer.
Deanna holds hands with her husband as she receives chemotherapy treatment on Valentine's Day. Terry brought flowers for all of the cancer patients receiving treatment on the ward.
The room was open, with gray floors, and the sick sat reclined with bags of cancer-killing chemicals like hummingbird feeders strung up on silver poles. Some talked or laughed with a visitor who had come to pass the time, others snapped pictures with their chemo nurses, others stared blankly ahead while the clear liquid dripped.
Slap. Slap. Slap. The nurse readied Deanna’s vein. Then the needle plunged.
Deanna brought a stack of playing cards and one of her doctors from Heart Hospice to help pass the time in chemotherapy. She liked the company of Laina Rodela, a straight-talking palliative care expert. But Deanna also thought Rodela’s presence was good for business. When doctors saw Deanna hooked up to chemo and came over to talk, Deanna made sure to introduce them to Rodela. She made sure to talk about the hospice and how well it was doing. She took a stack of brochures out of her purse and laid them on a nearby table.
“Have you met our new marketing director?” she said.
“Yeah,” one doctor said. “We got the new snazzy pens.”
“As much as y’all are able to send patients my way is critical right now,” she said.
Deanna assured the doctor she was completely unwilling to sell Hearth, despite the cancer.
“This is my mission,” she told the doctor. “I’m not dead. The company is fine.”
The doctor smiled. He told her he had a patient like her recently who had lived 10 years with her same cancer.
“You can be the tail on the curve,” he said. “That is what we are expecting for you.”
She grimaced when he walked away. She hated to hope.
THE ROOM WAS OPEN, WITH GRAY FLOORS, AND THE SICK SAT
RECLINED WITH BAGS OF CANCER-KILLING CHEMICALS
LIKE HUMMINGBIRD FEEDERS STRUNG UP ON SILVER POLES.
“I don’t have that magic cancer-fighting thinking,” she would say when people tried to encourage. “I know all the tricks of giving people hope.”
A woman, Joy Wright, walked by, shocked to see her, and Deanna’s face lit.
Just a few months before, Deanna had cared for the woman’s husband. He was dying of stomach cancer, and had had 50 percent of his stomach removed.
Joy had been skeptical when the family had signed up for hospice. But the nurses were responsive. Deanna visited daily, Joy said.
“We felt at ease,” said Joy. “She gave us hope.”
When he vomited uncontrollably and was in severe pain, Deanna tried to lighten his spirits with humor.
You are exaggerating, she would say.
“I think someone is pulling your leg,” she would say to Joy.
He died, and now Joy was coming for her own chemo. The rare neuroendocrine cancer she carried in her body had come back for the third time.
“Why are you here?” she asked Deanna.
“The same reason you are,” Deanna replied.
Terry makes a smoothie with kale, apples, kiwi, and other fruits for Deanna's dinner.
Months into her cancer diagnoses she counted the pills. Dozens. They filled plastic bags and baskets.
Zofram. Phenergan. Lunesta. Tums. Pepcid. Reglan. Hydrocodone. Protonix. Tolterodine. Hyoscyamine. Xanax. Propranolol. Valacyclovir. Armour. Metoclopramide. To name a few.
Things had been strained between Deanna and Terry for days. The more distant she became from the hospice, the more agitated she became. Terry’s nerves were frayed. He wasn’t used to balancing the books, driving the kids to school and taking care of Deanna. It felt like having three children at once.
“He is not used to me being angry,” she said. “He is used to me being a whirling dervish of getting things done.”
Terry was a painter and a sculptor, and a good one. But when they met he worked at an alcohol and drug rehabilitation center and was a recovering alcoholic himself. He was slight with kinky hair and glasses, but she noticed him.
Rich people buy his paintings now, but they probably never would have if it weren’t for Deanna. She told him to stop giving his work away for free. She told him what he was worth. At art shows, when a person lingered on one work, she sold the potential buyer on two.
He loved her for that. She loved him, she would say, because of his resilience. In 1998, while the two were still dating, a van full of 30 of his paintings, months worth of work, caught fire and exploded on their way back from an art show in Atlanta. He could have despaired, but the next day he started painting again. Deanna admired that, how he wrangled chaos.
When chemo fell on Valentine’s Day, he brought pink roses to distribute to the entire room. The scene brought a flurry of questions for Deanna, and the others hooked to drips were shocked to find out she was a hospice doctor now dying.
“It just gets anybody and everybody,” one woman said, holding her rose. “It makes you realize how precious life is.”
Deanna watched a man lying across from her, his face lined with pain.
“Is he OK?” she asked the nurse. “Do you have what you need to give him?
“We don’t have any pain medications,” the nurse responded.
Deanna sat helpless, wishing for her white coat and prescription pad.
With flowers from her husband in her lap, Deanna receives chemotherapy treatment on Valentine's Day.
The scan of all scans would be on April 1, but as the days crept closer her mind went more toward death. Terry said it was good that her pain was easing some. It was good that the doctor who had last examined her couldn’t feel her lymph nodes.
He said the whole city was praying for them and that that good energy must be doing something. But she looked at herself clinically. She looked at herself as a doctor would.
She toyed with the idea of taking on an investor with the hospice. If she were gone, she wanted the business she built to continue. She pushed Terry to start paying the bills and be the primary parent.
“It’s crazy premature,” Terry told her. “You deserve good things. You deserve a miracle.”
One morning she invited a social worker to the house, and Terry brooded in the background while they planned his wife’s death. He built a fire in the living room fireplace, then backed away from the talk of living wills and final wishes and funeral plans.
At times, he paced.
At times, he would sit on the steps and put his head in his hands, his eyes wet, swollen with tears that didn’t fall.
AT TIMES, HE WOULD SIT ON THE STEPS AND PUT HIS
HEAD IN HIS HANDS, HIS EYES WET,
SWOLLEN WITH TEARS THAT DIDN'T FALL.
The women spoke as if they were making a simple transaction.
What about a coma? Do you want the machines on then? What about permanent, unrelenting confusion?
Do you want your lips to be moistened or have a washcloth placed on your head? Do you want to be read to? Do you want people to pray for you?
Should the kids watch? What if you are gurgling or suffocating? Do you want them to see?
Do you want your body cut apart and studied? When should the funeral home wheel you away? Do you want balloons released afterward?
“Terry, this is a form put out by the Department of Health,” the social worker said. He barely looked at it.
“In the time of the crisis we don’t want to have to wonder what she’d want,” she said.
Deanna paused to explain.
If you withhold the fluids, the feeding tube, you may feel like you are starving me.
But this is what I want.
A long silence.
“Don’t talk to me like a doctor,” he snapped. “Talk to me like my wife right now.”
Terry told her the death plan was premature, but she wanted to get it out of the way. She had seen too many families torn apart by the details in the final days, so unsure of what the person would want when they couldn’t or shouldn’t speak for themselves anymore.
She didn’t trust that Terry would easily let her go. So the social worker, not Terry, would be the executor. Deanna didn’t want Terry to have the burden. Terry wondered if he was being cut out.
Still, all she could think about was the face of a young mother she had treated years ago. The woman had the same cancer as her, the same stage. Like her, this woman had deserved to live so much longer, had deserved to raise her babies.
But she died.
That was science. That was the human body. That was the unsentimental reality of the disease.
“I can’t believe I’m the one who is going to be cured,” she told Terry.
Deanna reviews the lab results with Terry.
She would be radioactive for an hour. So the nurse left Deanna in a small space alone to wait for the scans.
Cancer metabolizes sugar seven times faster than a normal cell does. So a nurse injected her with radioactive sugar that would seek and find the sick cells and swallow them up, causing them to appear on the scan.
Terry sat in a waiting area, nervous and restless, pecking away at his cellphone. He had relied on Deanna to explain her illness to him, to decipher what the doctors said. All he knew about colors and form and beauty left him lost in this world of spaceship-looking machines and talk of platelets and albumin and liver enzymes.
He just wanted a miracle. He just wanted Deanna to believe in miracles.
He wanted to be able to say, “When Deanna gets better.” But Deanna wouldn’t let him. She weighed him down with her truth, her science, her probabilities.
He wanted to take her contra dancing and, for once, dance with her. He wanted to take her skiing. She loved to travel fast on snow, and the winter had been ruined by the cancer.
He wanted to pretend that she didn’t tell him she was going to start writing letters to the boys, letters for them to open when they graduated high school or got married.
Through thick glass he watched her body glide through a humming arched chamber as the machine took a picture every three minutes.
The results would be final word for them both.
Terry waits outside in the lobby as Deanna undergoes a CT/PET scan.
They crammed into a small room, almost elbow to elbow, and watched the wall lined with computer screens that conveyed strange shapes and lines, Deanna’s body stripped to its innards.
The reader of the test was an expert, a white-haired, large-bellied precisionist who relished in identifying the disease through the most advanced of technologies.
“I don’t read these,” Deanna said nervously. “So I need you to pretend like I am not a doctor.”
He pulled up two slides of her body. One was peppered with black spots: the cancer, the first pictures of the disease months ago. The other was the new scan, the first response to her aggressive treatments.
The doctor’s response was tempered at first. He leaned in and squinted his eyes and studied.
“This is a really good, positive response,” he said, unemotional.
“Really?” Deanna said from behind him, unconvinced.
“Hell, you wouldn’t even know there was cancer there,” he answered.
She looked at Terry. He grabbed her hand and squeezed it in his.
“This is good news!” the doctor kept repeating. “Boy! Thank God!”
He zoomed in closer, looked, studied, his face beaming as he realized what he was finding.
The bones were repairing themselves. The black spots — the cancer — had vanished.
Deanna laughed uncomfortably. She kept looking up at Terry’s face.
The doctor took her through the small pictures of her spine, explaining, carefully coaxing her to relief. The legions were retreating, caving in on themselves.
“Boy, this is a beautiful response,” he said. “Oh, this is pretty.”
Can you keep looking, she prodded, an anxious ringing in her voice. What about that picture? What about that spot?
It was hard to accept the miracle. It was hard to accept all that death lifting off of her, the weightlessness of knowing she would live to see her boys grow a few years older.
“What do you think, if we keep looking we will find bad news?” Terry asked. He saw her turning doubtful and afraid again.
“I don’t need any bad news. I just want the truth,” she told him.
The doctor broke the tension.
“Well, the truth is I was hoping you would get a positive response, but it’s even more positive than I thought. … I am damn close to calling you a PET CR, a PET complete response.”
“If you were reading this and you didn’t know there had been cancer, you would call this …”
“Normal,” Deanna chimed in, finally letting tears fall, leaning into Terry.
“THAT'S RIGHT,” THE DOCTOR SAID. “NORMAL.”
Terry told the boys before Deanna could get to the ballfield that night. She asked little Preston if he had heard the news.
“Dad said your cancer is getting better,” he said, then ran off in his grass-stained uniform.
At first she wasn’t sure if she wanted to tell people what had happened that day, about the scan and the hope. She sat on the bleachers and watched the small boys try to hit balls and make first base.
But she did call her mother-in-law and tell her the news. Deanna made her promise not to post anything on Facebook. She didn’t want all the questions about what the news meant, what it meant for her longevity, for the hospice. She still wasn’t sure.
More days was all she could guess. It meant she would have more days.
On March 27, days later, she announced the results to the world through a Facebook post and a picture of her two boys hugging and smiling.
“Miracle update: My scan yesterday showed miraculous response to treatment way beyond expectations!”
Terry kisses his wife as they see favorable results in her PET/CT scan on Wednesday, March 26, 2014. The results were positive, indicating a substantial decrease in the tumors which had infiltrated her bone marrow.
Life might never go back to normal — “normal” being Deanna working 16-hour days, always pushing, always planning, always near her patients, feeling their warm thanks.
No one knows how long chemo will go on. She still goes every three weeks and watches the clock as the medicine flows into her veins. Treatment could last for years. It could work. The cancer could stay asleep. Or, as one of her doctors put it, the roaches inside her, hidden now, could come back.
She started driving again, and the summer this year has been spent at the ballfield. Duncan has a good arm for a wiry boy of 10. There was a brief excursion to Key West, where she snorkeled off an island with her family and soaked in the sun and sand, took naps in Terry’s arms.
Hearth hired three doctors to replace her, and every day it is an act of will for Deanna to let go and trust that the people she hired will carry out her vision for a doctor-driven hospice. But she promises herself to stay close enough to be quality control, she says. She talks to doctors and nurses every day, asking about the patients, recruiting, the level of care. She pops by so everyone remembers her face. Now, more so than ever, having come so close to death, she believes in her mission.
She flip-flops between happiness and sadness, happy to live, happy for the small moments with her children, but sad to see her life so changed so suddenly, afraid of the years ahead, afraid of the cracks and creaks her body makes.
Still, the boys’ feelings are less complicated. While cancer threatened to steal their mother, it also slowed her down. Preston likes seeing her during the daylight hours. He makes her bracelets and runs to her for random embraces.
And Terry, with all his magical thinking, says he is more in love with her than ever before. On her last chemo he watched her temperature being taken and was so taken by her coy smile that he snapped a picture he will keep forever.
“I’m in awe,” he repeats. “I’m in awe.”
Doctors still stop and talk to her at chemo. They still weave their tales about one stage four patient they heard made it another 10 years. They still try to make her believe that she is the one, the special one.
Maybe. Maybe not.
BUT NOW AND THEN, HOPE CREEPS IN.
Deanna and Terry goof around with their youngest son, Preston, on the couch at home months after her CT/PET scan.