Resilience, the ability to be strong in the face of adversity, is increasingly needed to deal with the many issues which emerge when faced with the diagnosis of myeloma. 

As I have stated so many times before, the ongoing care for myeloma is a marathon, not a sprint. And all throughout, resilience will, undoubtedly, need to be enhanced.

Resilience in Day-to-Day Living

In my 2020 Conversations with Dr. Durie podcast interview with Sue Dunnett—a senior lecturer in the business school at the University of Edinburgh in Scotland, I asked her what resilience meant to her and why she thinks it’s important for myeloma patients. 

As a backgrounder, Sue worked for the International Myeloma Foundation (IMF) in the UK—her first job out of university and one that she loved. She helped set up several support groups in the UK and then went back to university to further her academic career, but knew that what she wanted to do “was to keep her connection to myeloma and to people living with myeloma.” Sue’s PhD was focused on “how people live with myeloma, and how support groups specifically allow those living with myeloma to navigate the healthcare market.”

“I did that research in the support groups of Wisconsin with a wonderful leader called Chuck Koval, who led the Madison support group in Wisconsin. So, although I did my Ph.D. here in Scotland, I’ve actually always researched and worked with the wonderful IMF community in the states and worked with support groups there,” she further narrated.

Going back to what resilience means to her, Sue recounted how she interviewed about twenty support group leaders from across the U.S. to ask them, “What keeps them going?”

“The support group leaders that I interviewed talked a lot about factors which I would have called resilient, but they were described as being quite normal, they would expect themselves to behave in this way, to keep going for other people, to use inner reserves to keep going. So, I explored resilience in leadership initially, so what kept them going specifically as people leading the group, initially. And then, so that was work that I presented at the Support Group Leaders Summit, which is an annual event where support groups come together. So, that allowed me to share insight on how I believe they were motivated and what barriers they face and so on. And then, I suppose the interest in resilience just continued,” said Sue.
  
She emphasized that resilience is not really about bouncing back— it’s about having proactive strategies to be able to adapt to problems which might arise. One must keep in mind that no one is fully resilient every day. The intent is to build up capabilities such that when problems do emerge, plans to deal with issues have been thought out ahead of time.

Although some people are naturally more resilient than others, the concept of working to improve resilience for everyone has become the major focus for her ongoing work. 

While doing her project on Support Group Leaders, Sue invited them to submit photos of what resilience meant to them. The photos showed mostly images of patients’ lives, their joys and experiences. 

Sue shared these photos during a Living Well with Myeloma Virtual Webinar: Building Your Resilience During Challenging Times in February 2021. 

The focus was to experience and live life to the fullest and to relate to the resilience and beauty in nature all around us. Going to weddings and family celebrations. Enjoying sunrise and sunset as part of the cycle of life. Looking at nature to see resilience. An old tree which has survived many stresses over the years. New plant growth through rocky soil. All of this clearly gave inspiration and hope. 

Resilience in Nature

Resilience in nature is definitely an inspirational model. In my September 21, 2023 blog, I wrote about “A Tree of Extraordinary Resilience”—the 150-year old banyan tree that was at the epicenter of the terrible fire in Lahaina, Hawaii yet miraculously survived and recovered despite being badly ravaged by the fire. 

The much-treasured banyan tree became a true testament of resilience for the Lahaina townsfolk, sprouting new green shoots and giving hope to the community. 

As of February 17, 2024, The Maui News reported that the famed banyan tree is doing well. Let’s hope that it continues to thrive. 

Meanwhile, a recent story from the New York Times talked about tardigrades and why they are “nearly radiation proof.” 

This reminded me how widespread resilience is in nature. Dr. Anne De Cian, a molecular biologist, decided “to introduce her children to the hidden marvels of the animal kingdom” by “gathering bits of moss, soaking them in water, and placing them under a microscope.”

The children found themselves gazing at an eight-legged creature—the tardigrade. What’s interesting is that Dr. De Cian brought these tiny creatures to her laboratory at the French National Museum of Natural History and did some experiments on them with gamma rays that were “hundreds of times greater than the radiation required to kill a human being.” Yet, the tardigrades survived the blasts, unscathed. 

The crazy thing about tardigrades is that they are nearly completely resistant to radiation or drought.  Even if they dry out, they come back to life with a drop of water even after months or longer. 

An important discovery is that tardigrades can produce proteins which allow them, for example, to repair DNA after radiation. They are truly resilient and  prepared to handle stressors if, for example, the moss where they live completely dries out for a prolonged period of time. 

In a book written by Robin Wal Kimmerer, Gathering Moss: A Natural and Cultural History of Mosses (2003), the author devotes an entire chapter (“In the Forest of the Water Bear”) on the tardigrades. I found the introductory quote from American biologist and naturalist E.O Wilson quite compelling: “Mysterious and little-known organisms live within reach of where you sit. Splendor awaits in minute proportions.” 

It's like a tiny world where the moss is a forest and the tardigrades run around it like dinosaurs—a micro world where these microscopic creatures remain sturdy and resilient.

It makes one think: if resilience can naturally occur among these creatures, so should it among human beings. To achieve this kind of natural resilience found in nature, humans will need to work hard to build it.

Resilience-Building for Patients

Moving forward, the plan is to offer tools that can build and enhance different types of resilience including in practical things such as transportation, finances, treatment selection, as well as emotional support. 

Educational modules have been created and the intent is to expand upon these at the upcoming Support Group Leader Summit in September, where Sue will, again, present to the group.

Specific Need for Resilience with Immune Therapy Options

I am excited to share the International Myeloma Working Group’s (IMWG) most recent study, published in The Lancet Oncology: International Myeloma Working Group immunotherapy committee consensus guidelines and recommendations for optimal use of T-cell engaging bispecific antibodies in multiple myeloma.

The IMWG publication discusses the best uses of T-cell engagers in myeloma. This is critical information, but a lot for patients to review and absorb. Resilience is required to reach out for guidance.

To gain the benefit of guidance about immune therapies needs both knowledge and the resilience to work through all the implications of receiving new immune therapy treatments. 

The Bottom Line

As illustrated by the availability of new immune therapies, it is quite demanding and requires resilience to seek out both the best new therapy option, as well as understand and cope with potential toxicities from these new therapies. 

You need resilience to chart your way forward with new immune therapy options available in 2024 and beyond.