July 23, 2020
Leukemia survivor and wife stay safe, connected despite COVID-19 restrictions
BY Sarah Zizinia
Britt Mayo has been coming to MD Anderson regularly since 2010, when he was first diagnosed with chronic lymphocytic leukemia (CLL).
“But when COVID-19 came around, it was a game-changer,” he says.
For 10 years and countless visits, he’d always come to MD Anderson with his wife, Diana.
“Neither of us were comfortable with me going to my appointments by myself,” Britt says. “She’s a great comfort to me and often remembers things that I don’t.”
Then, MD Anderson implemented visitor restrictions to further protect patients from the coronavirus, and Diana was no longer able to go with Britt to his appointments.
“We wondered, ‘How can we make this work?’” says Britt.
Britt’s chronic lymphocytic leukemia treatment
Britt was first diagnosed with stage I chronic lymphocytic leukemia in 2010. His doctor advised a watch-and-wait approach to treatment, which is common for early-stage CLL. After three years of quarterly testing and monitoring at MD Anderson, he started an immunotherapy clinical trial and received ibrutnib, and later, nivalumab infusions. After three years of treatment, he went back to a watch-and-wait plan in late 2016 when the disease had regressed.
In November 2019, Britt needed treatment again. Under the care of Philip Thompson, M.B., he received the standard treatment for CLL, which included six monthly infusions of the chemotherapy drug rituximab. He continues to take a daily oral medication, venetoclax.
Including Diana at appointments – virtually
Diana still drives Britt to his appointments and waits either in the cell phone lot or nearby outside of the building. Once he is in the exam room, Britt sets up his iPad in the chair next to him, where Diana would normally sit.
“When Dr. Thompson and his team come in the room, they see Diana in her chair on the screen. They look over and talk to her just as if she was there. She is able to participate in the same way,” says Britt. “It’s the next best thing to her actually being there with me.”
Diana agrees. “When you go to MD Anderson, you get the feeling of caring and everyone is watching out for you. It is so reassuring to still have that feeling, despite all the new protocols,” she says. “When you’re going through something like this, little things make a huge difference. The degree and quality of care is outstanding. It is clear to me they thought through everything and they have a plan.”
In an effort to respect other patients’ privacy and prevent unnecessary noise, Britt and Diana do not use the video call functions during his transfusions or in waiting areas. During those times, they communicate via text message. They have even been able to wave to each other while Diana waits outside and Britt is inside for treatment.
“When we were discussing different options, we talked about Britt going by himself and we wondered if there was any difference between me being on the video call at home, miles away, or just in the car outside,” Diana says. “But if I’m at home, I can’t be there right away if I need to be. That was important to us in maintaining a sense of normalcy.”
Staying socially distant and safe at home during COVID-19
Because of his health history, Britt exercised a degree of social distancing and caution even before the COVID-19 pandemic. His family has always had a rule that if someone has a cold or is feeling under the weather, they stay away until they are healthy again.
While Britt continues to attend his appointments at MD Anderson, he doesn’t go to other public places. He and Diana decided that hunkering down and staying socially distant made the most sense to protect Britt and keep them healthy.
The couple has utilized delivery or curbside options so that they can avoid stores and have stocked up on face masks. They have maintained their relationships with friends and family via video calls, but they say that not being able to hug their grandchildren is the hardest part of social distancing.
Still, they believe that the sacrifices they are making now give them the best shot for the decades to follow.
“I feel very protective and responsible. If there are things that he used to do that I can handle, I want to do them to keep him safe. It has made me feel good to be able to contribute that to his treatment,” says Diana.
Creating moments to look forward to during the COVID-19 pandemic
Since they have limited themselves socially, Britt and Diana have planned things to do together that they can look forward to. They take walks when it’s not too hot, try new recipes that they haven’t had time for in the past, and use free online offerings from local universities and art and entertainment groups.
“Every day, we have a morning or afternoon treat, where we put our phones away and just be with each other. We’re enjoying exploring new music categories and we do puzzles and computer games to keep our minds and reflexes active. Keep the long view, and don’t focus on the day-to-day,” advises Britt. “It’s been difficult to concede some of our shared duties and put them on my wife’s plate. But I know it’s the smart thing to do.”
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
It’s the next best thing to her actually being there with me.