Thomas Goode was a healthy and active 34-year-old when he was diagnosed with multiple myeloma, a type of blood cancer that affects bone marrow. He was determined to beat it.
But as he beat back the disease time and time again, only to see it recur, he realized he couldn’t live his life in battle mode. As he learned to accept his new life with an incurable cancer, he also started helping others who are diagnosed with the disease.
“I realized if I wasn’t able to live my life without being angry all the time because I have cancer, then my life would be meaningless,” he says.
Goode has survived multiple recurrences of the deadly disease since 2005, undergoing chemotherapy, radiation and multiple stem cell transplants. Earlier this month, he celebrated the sixth anniversary of his cancer being in remission – his longest stretch of time without a recurrence since he was diagnosed.
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In recent years, he helped found the Triangle Area Multiple Myleoma Support Group, based in Durham, and also counsels people who have been diagnosed, helping to answer their questions about experience with treatments and to share his story of courage and perseverance.
Goode says when he tried to talk to people who had been through his experience early on, few wanted to talk about it. So he felt he should share his story as widely as possible.
“What do I get out of keeping my cancer to myself?” he says.
Andrew Downs met Goode after his own diagnosis with the disease, and he has been active in the support group. He says Goode has a natural empathy toward others that made him a natural in this new role.
“He has an uncanny knack for being supportive,” says Downs. “He has a way of understanding exactly how a person is feeling and how to talk to them in the right way.”
Rejecting the death sentence
Goode grew up in Virginia, the youngest of 11 children in a close-knit family with strong religious ties. He came to North Carolina to work at the correctional center in Butner, though he currently does not work due to his illness.
He has always been athletic, a regular at the gym who likes to lift weights and play basketball. His ordeal began when he started to feel an intense, shooting pain in his shoulder that didn’t seem to be related to his workouts.
He was first told it was bursitis, them plasmacytoma, an isolated cancerous tumor. After an initial operation to remove it, he again felt a strong pain, this time in his lower back.
That time, they found multiple lesions on his spine and diagnosed him with multiple myeloma, a type of cancer that begins in plasma cells that produce tumors on bone. Initially, he was told his life expectancy was three to five years.
“Everybody feels cancer is a death sentence,” he says. “That was a tough pill to swallow.”
But he hoped he could beat those odds. His siblings, all of whom live in different states, surrounded him with support, creating a schedule to come and take care of him during and after surgeries.
Because he was young and healthy, his doctors could be aggressive, using higher levels of chemotherapy and even performing multiple stem cell transplants.
His doctors tried a stem cell transplant using his own blood. Then they told him they would need to find a match among his family members.
It turned out his brother was a match and donated cells for two transplants. Since then, Goode has taken daily chemotherapy pills, and the cancer has stayed at bay.
Becoming an advocate
Goode admits he fell into a depression at one point during his ordeal. He had lost his job due to his illness and was staying at home with his children. He had started to lose hope that he would ever escape his illness.
He eventually found what he calls the “new normal.” He still does all he can to stay healthy – eating well, exercising, being alert for any changes. But he doesn’t spend his days focused on his illness.
“Once I realized that my cancer could come back at any time, my attitude changed,” he says. “Now I’m just going to live my life.”
Goode started his work in advocacy at the suggestion of his doctor and immediately fell into the role. He worked with others to form a support group that meets monthly in Durham, allowing people living with disease and their families to discuss their progress and difficulties.
These days, he frequently fields calls from people who have been recently diagnosed. Having researched the disease and treatments for years now, he is knowledgeable on the topic.
He provides a perspective doctors can’t, from his own experience with chemotherapy to the emotional roller coaster of having a disease that could come back at any time.
He’s also increasingly become involved in advocacy, helping to promote policies to support research into the disease and helping families affected by it. He has also been an ambassador for the national marrow donor program.
Since his last transplant, Goode has made a tremendous effort to regain his strength with frequent exercise, lifting weights, riding his bike and watching his diet closely. Fit and muscular, Goode’s appearance now gives no inkling of his illness.
Downs, who is recovering from a recent transplant, says Goode’s physical transformation after such a draining experience is evidence of his positive outlook.
“You can’t overestimate the fortitude and persistence it has taken for him to do what he has done,” Downs says.
Goode has started to see himself as a spokesman for his condition. As a black man, he is an apt representative for a disease that affects African-Americans at a twice the rate of other racial groups. He also hopes that his successes in fighting the disease will serve as an inspiration to others facing a cancer diagnosis.
“If I am the face of myeloma,” says Goode. “I’m good with that.
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Born: August 1971, Virginia
Career: Founder and volunteer leader, Triangle Area Multiple Myleoma Support Group
Awards: Honored Hero, Light the Night Campaign, Leukemia and Lymphoma Society, 2016; LiveBoldLiveNow Hero, HealthCentral.com, 2017
Family: Children Briana, Ariel and Tasia