By Tyler Smith | UCH Insider
Sometime soon, a train will roll east from Denver, passing through countryside growing green with the lengthening spring. Carlo Spivey will be aboard for the trip, one of many he’s taken during a lifetime of wandering. This one will bring his life full circle.
The train will take Spivey to Cleveland, his boyhood home, where he will share a bittersweet reunion with his adoptive sister. Spivey, 52, has stage IV lung cancer. The radiation and chemotherapy he’s endured in battling the disease have hollowed him out physically. He’s gaunt, bald, and wracked by periodic bouts of deep, painful coughing.
Spivey is a living reminder of the wasting power of disease. But he’s luckier than some in that he’s not fighting his battle alone. On a recent Friday morning, the bright presence of his three-year-old son, Dylan, relieved the tedium of Spivey’s chemotherapy infusion at the University of Colorado Cancer Center.
“That’s my lifeline,” Spivey said, as Dylan cheerfully munched on crackers and crinkled the package wrappers. “When he gives me a smile or a look, it gets me out of my depression.”
A hand up
Instead of succumbing, Spivey is spurred to fight for the life he has left. Whatever that measure may be, Spivey said he owes much of it to the Cancer Center’s staff and providers. He was the first patient treated at the Multidisciplinary Lung Clinic, and underwent radiation supervised by Laurie Gaspar, MD, chair of Radiation Oncology. Director of Oncology Clinical Services Tom Purcell, MD, MBA, now oversees Spivey’s chemotherapy and other medical care.
None of that would have been possible, however, without staff who toil behind the scenes to seal the cracks in a health care system that all too often swallows the lives of people like Carlo Spivey. He readily acknowledges that without the combined efforts of social workers, financial counselors, nutritionists, nurses and philanthropists, he wouldn’t be in a position to board the train to Cleveland.
He’s come to rely on the kindness of people who once were strangers. “I called here without any background and without checking on the facility,” Spivey said. “Everyone here has been so uplifting to me. They’re like my family. The moral support means more to me than anything.”
Wandering spirit
It took more than moral support, though, to save Spivey. He arrived in Denver months after receiving his diagnosis in late May of last year. He sought a second opinion but says he was told by physicians in Charleston, W. Va., where he was visiting his brother, that he wouldn’t need one. “That pissed me off,” he said, still clearly angered by the memory.
After a stop in Olathe, Kan., to see another brother, Spivey traveled to Denver at the invitation of a friend who promised stability for him and Dylan. That didn’t work out, however, and Spivey and Dylan spent time in the Samaritan House, a homeless shelter in downtown Denver.
But he found a safety net at the Cancer Center. Before his initial visit to the Lung Cancer Clinic, social worker Joan Hart, LSW, OSW-C (right), got involved, helping to coordinate assistance for Spivey. Financial case coordinator Pam Miranda helped him apply for Medicaid so he could get treatment. Lisa Wingrove, RD, a dietitian with Oncology, supervised Spivey’s nutritional needs. Hart arranged transportation to get him to and from his appointments and worked with a case manager at the Samaritan House to make sure he could have food and drink in his room – something not normally allowed at the shelter because of sanitation concerns.
Hart is skilled at knitting such webs of support for Spivey and others, but she said they won’t hold without one vital thread: the patient’s buy-in.
“I said to him that we could help, but he would have to commit to staying in Denver and doing what he needed to do for his treatment,” Hart said. “To his credit, he did.”
Facing the future
Hart also helped Spivey face up to the most difficult question of all: what would happen to Dylan after he died. She discussed end-of-life planning with him, ultimately nudging him toward reconnecting with his family in Cleveland. Dylan needed a more stable environment, and Spivey’s sister wanted to help. The question was how to get Spivey home.
“We needed a plan,” Hart said, and she found it by again tapping resources to supplement her patient’s commitment to changing the course of his life.
From the beginning of Spivey’s stay, the University of Colorado Hospital Foundation provided support through patient assistance funds designated for lung cancer patients. Hart also secured a $100 Visa card from a stage IV lung cancer patient who wanted to help others with the disease.
To get back to Cleveland, Spivey needed to travel by train, as his oxygen tank precluded air travel. A sleeper car was also a must so he could avoid transferring to another train. He saved $500 from his disability checks, but needed another $500 to pay the fare. Hart found that through the Marlene F. Landy Cancer Foundation, founded by Marlene’s husband, Richard Landy, after her death from breast cancer in 2004. The foundation’s simple goal is to help people affected by cancer.
“Richard has no criteria for who he helps. There are no strings attached,” Hart said. “He relies on us. But we only refer cases to him when it’s something that doesn’t fit the criteria of other cancer foundations.” Landy concluded that Spivey’s case fit the bill and sent a check for the remaining $500.
Final destination
Spivey will soon begin what could be the last leg of a journey he freely admits was filled with hard living, including heavy smoking, the signs of which are etched in his face. He played percussion for a heavy metal band he formed with friends he made in Australia in the 1980s and says he spent years touring Asia with them. He lived for many years in Las Vegas doing various jobs, including driving limos and trimming, removing and transporting trees. He endured stints of homelessness in San Francisco, where he recalls spending days walking the length of the city.
He was living in Hollywood, Calif., in 2011 when he returned to Las Vegas with Dylan and the boy’s mother. Some of those memories help to sustain him, but other remembrances of the difficult times are now streaked with pain.
“He and I used to ride around town with him in a trailer on the back of my bike,” Spivey recalled, looking at Dylan. “It’s hard knowing I won’t have a full life with him, teaching him to throw a ball. But I blame myself.”
He admits to bouts of anger that he has occasionally unleashed on staff. “I’ve asked a lot of them,” he said. “But they have opened their hearts to me. When I go back to be with family who will take care of me, I will miss this place.”
With the help of the Cancer Center, Spivey will continue his chemotherapy at the Cleveland Clinic after he returns to Ohio.
“We’re not guaranteed how long we live,” he said as Dylan stirred beside him. “I’m going to fight regardless of the pain.”
Tyler Smith, UCH Insider
tyler.smith@uchealth.org or uch-insiderfeedback@uchealth.org.