The Centers for Disease Control and Prevention reports that about one in every 20 adults in the United States has survived cancer, including nearly one-fifth of all people over 65.
An ongoing study of cancer survivors by the Southwest ADA Center suggests that many survivors face employment discrimination and lack an understanding of their protections under the Americans with Disabilities Act.
Although cancer treatment is more successful now than ever before, survivors sometimes have to deal with loss of income caused by disruptions in work.
The ADA disability definition including cell growth has a clear and obvious application to cancer, yet employers are reluctant to make accommodations, which can include extended leave of absence.
Besides discrimination, according to a report by the American Society of Clinical Oncology, some cancer survivors experience post-traumatic stress once released from the hospital and have difficulty making sense of the mental, social and physical challenges associated with their health struggles.
Stated in a briefing by the Leukemia and Lymphoma Society, cancer-related fatigue and lack of concentration can be expected, worsens during the course of treatment and may persist for years.
The ongoing issues with fatigue, concentration and stress during and after cancer treatment are often misunderstood by medical professionals and family members.
Thaddeus Kostrubala, M.D., author of the Joy of Running, has personal experience with cancer and the side effects of cancer treatment.
His book, which sold over a million copies, was one of a handful of books that started the running craze of the late 1970s.
He wrote the book after realizing that exercise was improving his health.
We met when he and his wife stopped by the house to see a stationary bike I was selling.
Kostrubala, who is in his mid-80s no longer runs, but is an active walker, and wanted to increase his aerobic exercise.
Although I did not make a sale, I was able to talk him into providing a runner’s forum for the local running club, the Santa Fe Striders.
Kostrubala spent his career as a psychiatrist. He lives in Santa Fe with his wife, Teresa, a psychologist.
They will publish a new book later this year tentatively titled: The Joy of Cancer.
My first question was about his experience and challenges during and after surviving Leukemia.
“The hardest thing was watching how my wife was affected by the stress of becoming the major provider of care for me. As I lost the ability to walk, secondary to the loss of muscle and balance, she had to push my wheelchair, bathe me and dress me. Added to these, my loss of memory [necessitated] her management of my medications,” Kostrubala said.
He said he realized that he needed to gain more strength and control to help his wife with her new responsibilities.
“I deliberately chose to be positive, which was initially very difficult for me. She tells me that it did help, as did my humor,” Kostrubala said.
“It took the actual experience of having that disease, and grappling with the changes that slammed into my very being and life, to allow me to at least begin to appreciate those challenges that some of my patients had faced,” Kostrubala said.
“Too often the patient retreats from the world and lives inside a hidden shell of horror. I am trying to explore from my own personal perspective on how the spiritual side may help a patient and their families,” he said.
Kostrubala said that this sense of spirituality, kindness and the capacity for love made a positive impact on his psychological adjustment and well-being and may help others, thus the title of his upcoming book: The Joy of Cancer.
Andy Winnegar has spent his career in rehabilitation and is based in Santa Fe as a training associate for the Southwest ADA Center, 800-949-4232. He can be reached at firstname.lastname@example.org.