It took Lise Wise 4 years to attend her first support meeting after her diagnosis of Waldenstrom’s macroglobulinemia at the age of 44. “It’s an indolent cancer that grows slowly,” she said, and she hesitated to seek out other patients because she expected to find sick people who had no hair and no eyebrows.
But she was wrong.
Wise found friends and a new way of looking at life with cancer and, today, she is committee chair of the International Waldenstrom’s Macroglobulinemia Foundation (IWMF).
But life with Waldenstrom’s can be long and fulfilling, Flora-Tostado said during a breakout session for caregivers at the IWMF 2019 Forum in Philadelphia.
Flora-Tostada knows this firsthand; her husband was diagnosed with Waldenström’s macroglobulinemia the week he retired.
It was a scare at first.
“It was a scare at first,” she said. “You’re just getting to retire and now you get to worry about this. That really wasn’t any fun.”
But today, her husband has become so self-aware living with the disease, and “diligent with kindness and sweetness by paying attention to biofeedback,” she said, “his personality has actually improved.”
That is because “instead of shutting out the worry, we responded by addressing it” and learning ways to “soothe the parasympathetic system,” Flora-Tostado explained. Her husband learned to meditate and uses an app that helps him monitor his heart rate so that he sees how emotional states are affecting him and can regulate his reactions.
“He’s taken the time and had the diligence to practice skills to be more in charge of his own affect, his feelings,” said the psychologist.
Living with this disease “offers the opportunity to look at life more realistically,” Flora-Tostado said. “Death is part of the process of life. Appreciating the moments you do have is vital to life; you’re not in your past, or future, you’re in the present.”
It is also an “opportunity to get to know yourself and be more of yourself, rather than letting your nerve endings react to the world,” she told Medscape Medical News.
The key to acceptance is talking to other people with Waldenstrom’s macroglobulinemia and forming a network of fellow patients, family, and friends, said Flora-Tostado.
That network is as important to caregivers as it is to patients. For example, sometimes a loved one has more anxiety about treatments than a patient, she explained.
As a caregiver, it is also important to learn how to offer help, she said. Her husband can be sensitive about offers of assistance and is quick to remind her, “I’m not dead yet,” when she casually asks if he wants any snacks from the kitchen during a TV commercial break.
“Even common niceties can be interpreted as caregiving,” she pointed out. Sometimes, it’s more important to refrain altogether. “Often, he just wants me to be present.”
It is useful to keep the ALOHA fundamental of caregiving in mind — ask, listen, observe, help, ask again — said Flora-Tostado. “There’s a lot of checking needed; did that match what you needed? It’s also important to have people to talk about things. If it can’t be face to face, then virtual is good, too.”
Jan Waldenström, MD, who discovered the disease, had a motto to explain the treatment path: “Do as little as you can for as long as you can.”
Rather than finding a doctor to get rid of it, find someone who understands it and can monitor it and offer treatment at the right moment, Wise explained. “It’s important to save your magic bullets (medicines).”
When she was diagnosed, she wrote an email to friends explaining that they should consult the IWMF to learn about the disease, not Google. She did this in part, she said, to make sure they did not leave tuna casseroles on her doorstop.
The disease is different for everyone, but “it’s not sexy,” she pointed out. Because “we don’t have hot pink as our color, or parades, and we don’t have a tagline,” it is lonely from the get go.
The IWMF has more than 45 volunteers all with knowledge about different areas of the disease, kinds of treatments, and adverse effects. There are also folks volunteering who have been living with the disease for more than 20 years.
Flora-Tostado and Wise have disclosed no relevant financial relationships.
International Waldenstrom’s Macroglobulinemia Foundation Education Forum. Presented June 6 and 7, 2019.