A Journey Of Resilience: A 31-Year Battle with WM
By Art Brewer
from the IWMF Torch, October 2024
On January 1993, Catherine Callahan received a diagnosis of Waldenstrom’s macroglobulinemia (WM) that would change her life. At the time, the prognosis for newly diagnosed patients was grim, with a life expectancy of only seven years. Catherine, then 43 years old and a divorced mother of two young sons, feared she would not live to see her younger son graduate from high school. Yet, 31 years later, Catherine’s journey is a testament to resilience, hope, and gratitude. Over the years, Catherine has faced numerous other health challenges she believes are related to WM, including neurological issues like peripheral neuropathy and cerebellar ataxia (a brain disorder that affects coordination and balance), and a host of other conditions such as breast cancer, achalasia (an esophageal disease), and a susceptibility to infections. Yet, she remains undaunted. “I am grateful for the day I have, and my purpose in life is to learn, grow, and be of service to others,” she said. A Midwesterner by birth, Catherine moved to Santa Barbara, CA, in 1980 and has made it her home ever since. With a bachelor’s degree in zoology and a master’s in regional planning and environmental studies from the University of Wisconsin-Madison, she built a career as an environmental scientist, working for an international consulting firm and the New Mexico Environmental Improvement Department. She also ran her own company focused on research in environmental treatment technologies. Though she retired in 2001 due to disability, Catherine remains active and engaged in life. Her WM diagnosis came after an unexpected weight loss, leading her internist to discover an elevated protein level. Further tests revealed an IgM spike, and a bone marrow biopsy confirmed WM. Catherine, who had always been healthy, suddenly faced a range of symptoms, including nosebleeds, headaches, and fatigue. Despite the severity of her symptoms, Catherine did not receive chemotherapy treatment until 1996. Her symptoms were first managed with plasmapheresis. This bought her some time, alleviating her symptoms temporarily. By 1996, it became evident that chemotherapy was necessary, but the question remained: which type? There were no approved treatments for WM; one of those being used was a therapy called 2CdA or cladribine, which was borrowed from treating hairy cell leukemia. She received the drug, but it was not effective. When her symptoms returned, she underwent a multiple myeloma treatment protocol that included chlorambucil, melphalan, and cyclophosphamide, which was ineffective as well. Catherine was then referred to UCLA, where she was counseled to wait several more months for the chemotherapy to take effect. After two more years, she recovered enough to return to work in 1999.
However, the toll on her body was severe, and it took three years for her to recover fully. During her recovery, she relied on Social Security disability benefits to support herself and her children, since she could not work and did not receive alimony. “We underestimate what it takes for a lot of folks who are struggling with a debilitating disease,” she reflected. In 2009, Catherine began horseback riding therapy while wearing leg braces and using a cane. With a combination of surgery, the help of skilled professionals, very hard physical and emotional work, a fierce desire to walk, and sheer luck, she regained the ability to walk without braces or cane by 2016. Catherine did not receive WM treatment again until 2014. Two consecutive years of rituximab and fludarabine for WM and light chain deposition disease gave her breathing space and left her temporarily dependent on intravenous immunoglobulin (IVIg), which ended in 2022. Catherine’s story is one of determination and advocacy. She strongly advocates for counseling, which has been instrumental in helping her and her children navigate the emotional challenges of living with a life-threatening disease and managing the stress of unexpected events. “I realized that while I couldn’t control the disease itself, I could control how I lived my life and how I raised my kids,” Catherine said. “I focused on what I could do to support them and prepare them for the future.” One of her sons is now a lawyer in the alternative energy industry, and the other is a researcher with Sandia National Laboratories,
Catherine with her book about navigating health care challenges.
the nation’s premier science and engineering lab for national security and technology innovation. After her initial WM treatment, Catherine sought out resources and support networks. She connected with Arnie Smokler, who was organizing an online presence for WM patients, the precursor to the International Waldenstrom’s Macroglobulinemia Foundation (IWMF). Catherine became one of Arnie’s confidantes and joined the online group, which consisted of just 54 people nationwide. Although she was elected to the IWMF Board of Trustees, her health prevented her from serving. However, her involvement helped shape the early community of WM patients and caregivers. In 2018, Catherine launched ICareHealthCare (icarehealthcare.net), a business dedicated to helping patients with health advocacy issues, funded by a women’s empowerment grant. She also authored a book, You Can Do It!: Tools to Better Manage Your Healthcare, where she shares her insights on navigating healthcare challenges. Her advice to patients is straightforward: (1) find a strong healthcare advocate and learn to be your own advocate; (2) a daily gratitude and acceptance practice can ease your way; (3) therapy for the emotional issues is invaluable; and (4) life is hard work, yet there is still fun to be had.
Music has also been a source of solace and joy for Catherine. For 30 years, she sang Renaissance and Baroque music with a small group in Santa Barbara, bringing comfort to patients in hospitals and nursing homes. Although the group disbanded in 2019, the experience continues to nourish her soul. She is an accomplished musician, playing the flute, piano, and viola da gamba, and she finds peace in listening to her favorite composers, such as Josquin des Prez, Giovanni Pierluigi da Palestrina, and Tomás Luis de Victoria, while waiting for doctor’s appointments. Catherine’s journey is also deeply spiritual. Since 2013, she has been an active member of the Unitarian Society of Santa Barbara, which she joined shortly after her breast cancer diagnosis, and where she finds support for her spirituality and commitment to social justice. Her 45-pound dog, Lola Blue, is another source of joy and keeps her active. “I have a magpie mind and I’m involved in a lot of different areas,” she shared. Catherine has also enjoyed engaging in other interesting activities such as:
- Touring Exxon’s offshore oil production Platform Hondo after being transported via helicopter
- Piloting a Goodyear blimp along the sunny Santa Barbara coastline;
- Using a high-performance manual wheelchair designed for basketball, which was provided by Medicare after she temporarily lost the ability to walk safely—the chair allowed her to move quickly and even score a basket
- Forming and leading a weekly wheelchair dance class, creating routines for her group to perform at the 2008 University of California, Santa Barbara (UCSB) Junior Wheelchair Sports Camp
Through all the challenges, Catherine remains steadfast in her belief that life, even with a debilitating disease, is a gift. “These experiences, coupled with my health challenges, have helped me cultivate patience, optimism, and a deep understanding of the human body,” she said. “I believe quality of life is paramount. Despite my difficulties, I consider this the best period of my life. I’m grateful for the extra time to appreciate life’s beauty. And I categorize my attitude as optimistic realism, unfeigned.”
Catherine Callahan’s story is a powerful reminder of the strength of the human spirit. Her journey through WM and beyond exemplifies how embracing life with gratitude and purpose can transform the challenges of illness into opportunities for growth and connection.