With the right support, the office can be a welcome distraction for those in treatment, maintaining a social network and routine.
During her career with Jewish Family Services, Lynn Aspey had been humorously known to possess “energy not known to man.”
On the day she retired, Aspey learned she had small lymphocytic lymphoma, a cancer affecting white blood cells. After the diagnosis, she found herself slipping into a deepening depression. “I realized if I stay on the couch, I will wallow in self-pity, and that’s not going to do me any good physically or emotionally,” Aspey says.
So when her boss asked if she would come back to work part-time, “it was music to my ears. I knew I was going back to ‘family.’ Going back to work kept me focused on other people.”
Aspey is one of millions of Americans who continue to work while living with cancer. Their reasons for doing so are many.
For a majority, there is the practical matter of keeping income, health benefits and paid time off. People also may not want to feel their careers are being interrupted and wish to remain productive. Work also can provide a much-needed support system, says Kristen Jackson, a rehabilitation psychologist at the James Cancer Hospital and Solove Research Institute.
“Cancer can be a storm of chaos. Work becomes something that anchors people,” Jackson says. “Work can be the one thing they can continue doing that’s not about cancer.”
Choosing whether to continue to work is an intensely personal decision that depends on a variety of factors: how aggressive is the cancer, what are the side effects of treatment, will being in an open workspace pose a danger to patients with depressed immune systems? Will the benefits of working outweigh the downsides?
“Many people are surprised at how much chemo takes out of them,” says Rupa Ghosh-Berkebile, a nurse practitioner in the Cancer Supportive Care Clinic at the James. “Energy management is kind of key.”
Besides exhaustion, other challenges facing cancer patients include nausea, vomiting, neuropathy and so-called “chemo brain,” a cognitive fatigue that makes it more difficult to concentrate, process information or find words when speaking.
For those trying to work while managing the effects of cancer and treatment, two laws are essential: the Americans with Disabilities Act (ADA) and the Family and Medical Leave Act (FMLA).
The ADA applies to companies with 15 or more employees and requires employers to make “reasonable accommodations” for those eligible. In the case of cancer, those accommodations may include more frequent breaks; locating the work space in a quiet place and closer to restrooms; noise-cancelling headphones; and special office furniture and equipment. Working from home and scheduling days off following treatment also may be considered accommodations.
“I’ve seen people working on their laptop or talking on the phone while receiving infusions,” Jackson says.
Aspey urges people not to be afraid to ask for accommodations. When she shared with Jewish Family Services CEO June Gutterman that she was at risk for infections, Gutterman provided her with her own office space. “She was beyond wonderful,” Aspey says.
FMLA provides job-protected unpaid leave for up to 12 weeks a year, which can be taken in increments, says Brigid Heid, an attorney with Eastman Smith.
The law applies to companies with 50 or more employees who live within 75 miles of each other. Applicants must have been employed for 12 months prior to requesting leave, but that time does not have to be consecutive, Heid says.
In addition, sections of the Ohio Civil Rights Act mirror the ADA but apply to companies with four or more employees, Heid says. In some instances, more than one law applies, in which case the employer “must apply the one that offers the greatest benefits and rights,” she says.
While some level of disclosure about their illness is required when requesting leave or accommodations, people living and working with cancer should feel free to share as much or as little as they feel comfortable with in the workplace, says Tammy Allen, director of associate health at OhioHealth. She knows of someone who went through her entire treatment without anyone being aware. Another involved co-workers, who rang a bell and celebrated with cake when she completed her treatment.
Jackson says some people designate a point person to share information with co-workers so they don’t have to answer questions all day about their treatment and how they’re feeling.
Co-workers can help by choosing their words carefully, says Angie Santangelo, clinical program director at the Cancer Support Community Central Ohio. “Be careful about saying things like, ‘You’re such a fighter.’ Some people love to hear those words, and others really don’t like them.”
Likewise, Ghosh-Berkebile says, “Saying ‘You look well’ is a well-meaning comment, but it can be hard, making people feel like they have to wear a mask.”
Santangelo says while someone may look healthy, the effects of treatment can challenge their mental abilities. It helps to give co-workers undergoing treatment a few extra seconds to process information and respond. Chemotherapy “does attack your brain. I remember thinking, ‘I know how to do this, but today, I don’t,’ ” says Mary Sheskey, a social worker at the Cancer Support Community who was working as a cashier at the Ohio Statehouse during her treatment.
The Cancer Support Community is embarking on a program to link employers with its services as early as possible. When Cancer Comes to Work aims to address issues affecting employers, employees, families and peers through a range of services, including consultations with social workers.
For some people, a cancer diagnosis can be a turning point for how they view all aspects of their lives, including work. In some cases, returning to a grueling schedule and a demanding job may not be possible, Jackson says.
In such situations, she often asks, “What did you get from work, and how can we still have that in your life, even if it’s not the same job? It may be that we re-conceptualize completely what kind of work would be a better fit right now.”
Aspey has “retired” again but volunteers, writes and acts as a consultant.
In her experience, “If you enjoy your job, it’s better than staying home. If you don’t, figure out what to do during the day to bring you some joy.”