Sharon, Waldenström Macroglobulinemia

Coming from the corporate world and as a yoga teacher and practitioner for 30+ years, I understand the Buddhist concept of impermanence, meaning all that exists is impermanent; nothing lasts; change, change, change!

Like many people who hear the words, “You have cancer,” you quickly learn what the Buddha was expressing with his final words: impermanence is inescapable. And now I was faced with the challenge: Can I practice what I preach and teach? Can I let go of what I planned for my golden retirement years? Do I truly appreciate this simple but profound concept? Will I find peace and understanding if I am calm and mindful?

I would be lying if I did not admit there were moments of sadness and fear. I had watched my father and sister go through cancer treatments, both dying before they were even finished.

I knew I could not control what course WM had planned but I also knew projecting myself into the future was not going to help me in any way. I believe in the adage that knowledge is power, so learning about this rare disease from symptoms to treatment options would be a huge benefit.

I was able to begin building a solid knowledge base thanks to my local chapter of the American Cancer Society who directed me to the International Waldenström’s Macroglobulinemia Foundation (IWMF) who offered resources from information packets, webinars, various support IWMF groups like the International Facebook Group, Life Line Volunteers, or Wellness group, to their partners like LLS and Lymphoma Research Foundation, all providing a wealth of information (even though I still stumble over pronouncing macroglobulinemia).

Impermanence was my nemesis over the next few years. I began treatment (Bendamustine and Rituxan) in 2019, with multiple stops and starts due to low blood counts – and then the Covid shutdown happened right in the middle of treatment, need I say more!

Pivot – Although we were all stuck at home, the world of learning opened up. Yoga and ayurvedic trainings previously only offered in person were now becoming available online. I was able to attend over 700 hours of training, learning advanced meditation, breathing, and my other nemesis, Sanskrit, an ancient Indian language.

Pivot – Within two weeks of the shutdown, I found Zoom and began to teach my usual onsite yoga classes by Zoom, holding space for me and my community.

Pivot – Since my usual volunteer activities were also shut down, now what?

I believe in the adage that knowledge is power, so learning about this rare disease from symptoms to treatment options [is] a huge benefit.

Perusing the IWMF website one day, I found the Volunteerism Tab and one inquiry email has led me to opportunities I never expected. In 2021, I volunteered to participate on the IWMF Ed Forum Committee. I learned just how dedicated and supportive the IWMF Foundation and the lengths they extend themselves to ensure WM patients and their caregivers are educated and have the resources to navigate this rare disease. It was through this experience planning agendas and speakers for the forums that I also learned more and more about WM and the medical professionals who treat us.

Later that year I became a Regional Support Group Leader and also volunteered as a co-editor for the Torch (Quarterly) to solicit and work with the authors for articles focused on the different IWMF support groups. In 2022, I was asked to participate on the BeiGene Patient Advocacy Committee as one of several cancer patients sharing our experiences, with a focus on mental health for us and our care partners. Later in 2022, I was also asked to participate in the Lymphoma Research Foundation’s Ambassador Program.

Fast forward to 2025 …I have been very fortunate to still be on active monitoring with no treatment for WM, although after multiple bouts with pneumonia, bronchitis, and sinus infections, I receive IVIG treatments every six weeks. On the upside, the 3 &1/2-hour treatments allow me the time to create 4-6 weeks’ worth of yoga classes.

I am fortunate to travel whenever I can and that I still have the opportunity to participate on the above-mentioned committees and councils. When diagnosed in 2018, I never would have imagined this path for my life. With the support of my husband, family, friends, the different foundations, IWMF staff, and fellow WM patients, I have learned and experienced unforeseen opportunities as I navigate each new change and challenge.

As the Buddha says, impermanence is the number one inescapable fact of life. Impermanence, change, pivot!