By Tyler Smith | UCH Insider
Carlo Spivey sits in a chair outside the Infusion Center in the Anschutz Cancer Pavilion, his face drawn and weary. He occasionally hunches over a small yellow tub next to him, spitting into it after bouts of painful coughing.
Dana Rounsborg, RN, a nurse with the University of Colorado Cancer Center, arrives with a wheelchair. She helps Spivey into it and gingerly crosses his legs before wheeling him to Room 37 in the Infusion Center. With assistance, he sits on the edge of the room’s small bed. The coughing, which he said began about 2:30 that morning, continues.
“I’m going to need a bigger bucket,” he says, as he stares down through hollowed-out eyes.
This is the face of disease.
Spivey, 52, has stage IV lung cancer, diagnosed nearly one year to the day before the downturn in his condition that brought him to Room 37. He was to have had his final appointment with medical oncologist Tom Purcell, MD, and a last round of chemotherapy on this Friday morning, but a sharp drop in his white blood cell count changed those plans. Instead, Purcell admitted him to the Oncology Unit at University of Colorado Hospital.
Before he could go upstairs to the inpatient unit, Spivey would need an IV for hydration and infection-fighting antibiotics. His immediate attention, however, was on his three-year-old son Dylan, who burst into the room carrying blue balloons made from sterile gloves by an infusion nurse, Stacey Hemstreet, RN. The small boy hovered near Spivey.
“I’m not going to be admitted until there’s someplace for my son to go,” Spivey said.
This is the disruptive power of disease.
Things fall apart
If all had gone as planned, Spivey would have been preparing to board a train for Cleveland, where he hoped to find a stable environment for himself and Dylan in the home of his adoptive sister. But that had fallen through a week or so ago after Spivey learned his sister’s rocky financial state made the situation in Cleveland uncertain.
He’d hastily changed his plans, making contact with an old friend living in Stockton, Calif., who agreed to help Spivey and Dylan get settled. He’d be able to continue his chemotherapy at St. Joseph’s Medical Center in Stockton, Spivey said.
Now that, too, was on hold, and Spivey needed help arranging care for Dylan while he was in the hospital. He got that from Cancer Center social worker Joan Hart, LSW, OSW-C. Hart contacted Corrine Gipson, a friend who helps Spivey get to and from his chemotherapy treatments with Dylan. She and Spivey met when they were both in the Samaritan House, a homeless shelter in Denver. Gipson, a married mother of four who now has a home, said she would take care of Dylan until Spivey could get out of the hospital.
For the time being, at least, Hart had applied a patch to the social challenges that complicate Spivey’s medical treatment.
This is the uncertainty of disease.
No easy answers
There are no cut-and-dried solutions to the psycho-social problems that make it difficult for Spivey and so many other gravely ill patients to get the care they need, Hart said. She and other Cancer Center providers can’t solve thorny long-term problems, such as what will happen to Dylan after his father dies. But if they can remove at least some of the short-term barriers to medical care, Spivey and other cancer patients have a better chance of productively living the days that remain.
“Our focus is on the patient,” Hart said. “We do what we can to empower him to be a patient and a dad, a role that doesn’t stop because he has cancer. Right now, Dylan is being taken care of.”
And Spivey is just one of many patients with complex needs, Hart reminded. “Every patient who comes through the Cancer Center has a story,” she said. “We deal with vulnerable populations, and our job is to help them navigate the health care system and cope with the impact that their diagnosis and treatment have on their lives and those around them.”
She’s not in the business of saving the world. “From a social work perspective, we serve people by working with patients where they are, helping them determine where they are trying to go, and identifying what they need to get there,” Hart said. “We don’t want patients dependent on us. We want to empower them to use the skills and resources they have, and connect them to what they need."
In the open area outside the Cancer Clinic, meanwhile, Dylan scurried about, entertaining a 9News reporter and cameraman waiting to interview Carlo about his ordeal, while Gipson and a friend looked on.
Painful process
Inside Room 37, the scene was much different. Spivey forcefully objected when nurse Molly Harish, RN, told him she’d have to draw blood for cultures and get an IV going. “The timing of when we give you the antibiotics is important,” she said. He argued, asking if she could use a port to deliver the fluids. She patiently explained that a port has to be scheduled several days in advance.
This is the messy reality of disease.
Purcell entered the room, listening sympathetically but speaking reassuringly as Spivey spoke about dying. “It’s hot in here. I’m burning up,” Spivey said, as Harish prepared a tourniquet. “We’ll get a nice, good vein,” she said. “I’ll do one poke for the IV and for blood.”
Harish steadily worked the needle in, searching for a vein, while Spivey moved, winced and exclaimed in pain. She finally stopped, apologizing for the discomfort the procedure caused him.
“It’s not your fault,” Spivey said. “It’s my veins.” The team would successfully insert the line later.
Unfinished business
The room quiet for the moment, Spivey vented his frustration. “It’s hell,” he said, his shoulders slumped. He spoke bitterly of people not caring, of government “bureaucrats” who drag their feet on finding cancer treatments, of those who “talk the talk but don’t walk the walk.”
But he’s also admitted that he made choices, including smoking, that led to his predicament. Eventually the conversation returns to Dylan. Pulling out his cell phone, he says he has numbers coded in of family members to contact “if something happens.” Time in Stockton with friends, he hopes, will help him get back on his feet “while I figure out what I need to with my boy.”
It’s a difficult question. Spivey has a disease that can incapacitate him and a three-year-old who needs care. As Hart points out, that makes having his own apartment, even if he could afford it, a concern. The move to Stockton is therefore fraught with uncertainty – a constant feature of the forbidding terrain of disease.
Two days after he was admitted to the hospital, Spivey was discharged. His story continues, but for Joan Hart and her Cancer Center colleagues, the strands of the narrative probably won’t tie up neatly.
“It’s hard for people to understand, but when patients are finished with treatment, we don’t always know what happens,” Hart said. “We probably won’t know the remainder of Carlo and Dylan’s journey after they leave here. We all try to make a difference and help in the ways we can without feeling we failed because we didn’t fix everything.”
Published
by Tyler Smith
