Live by Living participants hiking Reservoir Ridge trail in Fort Collins, CO
Walking Through Cancer: How ‘Live by Living’ Participants Navigate Survivorship
by Hannah Cefalo, MPH
With this project, I aimed to illuminate the impact of Live by Living through participants’ perceptions, demonstrating how cancer survivors have been shaped by the program’s influence. This is shown by integrating personal anecdotes and additional feedback or suggestions. With this, more survivors, caregivers, and volunteers can get involved – reaping the benefits outlined below. All of which, stem from the voices of participants, research-based findings, and my own unique perspective.
“We’re all there for the same reason, to be ALIVE. That’s why it’s called Live by Living.”
– Double breast cancer survivor and retreat participant
Movement is our Sidekick
There is abundant evidence suggesting that outdoor group-based physical activity can benefit individuals experiencing cancer (1). Not only can it mitigate the negative effects of cancer treatment, but it also has the potential to alleviate the impact of cancer-related fatigue (2), improve physical functioning (3), and benefit survivors’ quality of life (4). Physical activity can also act as a means of prevention by reducing the risk of a cancer diagnosis (5). As well as leading to other health advantages such as the reduced risk for all-cause mortality, cancer-related mortality, and cardiovascular disease all highlighting the importance of physical activity for global health (6). To emphasize the evidence-based benefits, let’s hear firsthand from the perspective of Live by Living participants.
One participant who attends the Walk into Wellness and Hike into Health programs, who is currently experiencing multiple myeloma, states that this is her life, essentially undergoing treatment forever. After retirement, the plethora of time has allowed her to be much more active, engaging in yoga and some of her first experiences walking and hiking in a while. She notes how much physical activity has impacted her well-being by stating that she can finally feel the difference! Up until recently, she had not done a lot of outdoor exercise but now that she has, she, “…just feels healthier and understands how good movement is for her.” Although her active cancer treatment ebbs and flows, she feels that exercise helps move the medicine around her body and notes feelings of increased strength in her bone density.
This is one of many survivors who can understand the direct benefits of exercise. It is also crucial to recognize that physical activity may not be easy for all survivors. However, it is necessary and worth exploring different forms of exercise to find what works best for each individual. Ultimately, physical activity can play a significant role in helping cancer survivors manage their symptoms and feel a sense of accomplishment in their recovery journey.
Ranging Levels
One participant has been an athlete for most of his life, from age 8 to the time of his diagnosis, he states. He competed in everything from Olympic trials for swimming to racing countless triathlons in the Boulder area. Physical activity has always been a cornerstone of who he is as a person.
After his diagnosis, his lifestyle drastically shifted, noting lightheartedly that his diagnosis really slowed things down – no surprise there. His love for movement and the outdoors was still present, but his mindset was altered. He started taking his bike rides for what they were, not trying to go faster or further, but doing what he could and enjoying the gorgeous Colorado views.
When he started participating in the Live by Living walks and hikes it began as a learning opportunity. It was a space to be with others, get some suggestions for his neuropathy, cancer treatment, or perhaps, some life advice. After his first retreat, he began to realize all the different types of survivors who went on these walks and hikes. Some people were on crutches, carrying heavy equipment, while others were climbing up mountains with ease. Many other Live by Living participants felt this way, as similar themes were outlined in the survey responses. When survey participants were asked about impactful experiences from the Live by Living programs, many reiterated the varying capabilities of participants and the challenges it posed. Physical abilities ranged from participants who felt left behind, to others who thought hikes lacked challenge and desired greater difficulty. As Live by Living grows and participation increases, the programs can allow for even more differences in the degree of physical difficulty offered to participants.
Such feedback is expected given the nature of the program, the various cancer types, and stages of cancer among participants. However, this poses difficulty for the executive director, Dan Miller, whose overarching goal is to meet people where they are at, while facilitating a group-based program rather than providing individualized training plans. With this, one way to aid in the challenge of varying physical abilities among participants can be increasing volunteering participation.
The “Ex-triathlete” reports his newfound fulfillment has been achieved through volunteering in hikes and walks in the Boulder area. Through volunteering he has been able to give back and help every participant enjoy and interact with the outdoors more than they could accomplish alone. When volunteers help by staying back with participants or carrying their backpacks, survivors can experience living through exercise, nature, and community.
Champions of Camaraderie
An outstanding aspect of Live by Living is their perpetual impact through group cohesion and innate ability to cultivate a compassionate and understanding environment. One avid runner and breast cancer survivor notes her recent experiences as a newer Live by Living participant, mentioning her appreciation for the group-based nature of the program but in a slightly different way. “It’s an effortless way of welcoming each other…we don’t have to give any justifications as to why we’re here,” she noted with joy. This participant struggled to tell others in her life about her diagnosis but describes coming into the Live by Living program and how it felt like diving into a warm pool of understanding. Understanding from others living with a cancer diagnosis. Where survivors were there to provide genuine support as well as give back.
“We are all together regardless of the different paths that we’re walking through.”
– Breast cancer survivor and Northern Colorado walker
The survey and focus groups highlight the lasting friendships that have been formed through Live by Living programs. Between conversations during hikes to carpooling together to a retreat, participants have found a sense of camaraderie and support that extends beyond the outdoor activities themselves. One anonymous survey response stated, “The relationships I have forged with other survivors [during the retreats] have become lasting, meaningful friendships.” For many, the Live by Living programs have become a safe space to share stories, experiences, and emotions without fear of judgment. It is not just about the physical health benefits of getting outside, but also about the mental and emotional impacts that come with being part of a supportive community. Through a combination of walking-based activities and social support, Live by Living has created a community that promotes physical movement and finding connections in nature.
More Than a Support Group
During focus groups, participants chatted about the differences between Live by Living and traditional support groups. Traditional support groups create spaces for learning about your disease, connecting with others with similar cancer types, and understanding treatment and side effects. These support groups are vital, providing more information regarding a person’s diagnosis. However, with the Live by Living program participants described feeling a sense of “normalizing survivorship”.
Normalizing survivorship for Live by Living participants is knowing that they are more than their cancer experience. One recent breast cancer survivor says that other people in the program just “Get it,” and understand that they are more than their diagnosis. Open-ended survey results highlighted that participants rarely have to explain why they don’t feel good during walks or hikes and that they can finally escape from the cancer patient role for a while – forgetting about doctor appointments, treatments, and everything else that inevitably follows someone experiencing this disease.
What Live by Living offers could be more impactful than a typical support group. Rarely is cancer the focus of each walk or hike besides group introductions and sharing personal experiences with cancer. One participant put it exquisitely by saying, “It changed from a group of cancer survivors who [were getting outside together] …into a group of people who were hanging out outside, who happened to have had cancer.”
A Focus on Living
Another benefit of the Live by Living programs is having organized times and locations to meet which takes the stress out of planning for some members. One participant voices that she’s lived in Colorado for over 20 years and despite wanting to get out on the beautiful trails, she hasn’t gotten the chance to until now. She notes sentimentally, “I’m getting to see things I’ve never seen before and it’s been really really nice.”
“To me, it’s better medicine than anything else just to be outdoors.”
– Avid hiker, walker, and retreat attendee
The “meaning making” aspect of nature has captivated myself along with many others who appreciate the outdoors. Some understand meaning making as finding a deeper connection to nature and appreciating the vastness of our Earth while understanding we are all a part of something bigger. Some participants practice the mindfulness component during the outdoor programs, not just in the Online Mindfulness Classes offered by Live by Living. Research shows that nature can create a place for healing and oftentimes opens up as an environment to practice being present and mindful (7). Although the range in physical abilities was noted before, many participants enjoy being able to slow down, usually during the walks. This theme emerged throughout the focus groups and was conceptualized as “a focus on living”. One breast cancer survivor and hike, walk, and retreat participant notes, “Maybe I’m not climbing 14-ers like I used to, but just to be able to be outside and realize it’s not the elevation, it’s not the distance that matters. It’s just [about] being present.” Another breast cancer survivor and northern Colorado walk participant interprets this focus on living as, “I am bigger than this diagnosis, and I am more than that 8-and-a-half-centemeter thing.”
A focus on living, in alignment with the name Live by Living, can also highlight the act of experiencing life amid adversity, specifically a cancer diagnosis. The desire to slow down, connect with others through a shared experience, and to connect with nature, reminds participants they are still here, and still living.
Advocating for Diversity
The Live by Living program has a strong understanding of the inclusion of others. They currently strive to include individuals with different types of cancer as well as caregivers and loved ones of survivors. Despite the positive effects of Live by Living programs, it is essential to continue advocating for diverse populations’ access to similar resources and benefits. By doing so, we can ensure that everyone affected by cancer can benefit from the support they need to navigate the challenges of survivorship.
There are several ways that the Live by Living organization and its participants can continue working towards promoting health equity in their care for survivors. Health equity in this case, emphasizes providing fair and just opportunity for all individuals to achieve their highest level of health. First and foremost, they are working towards expanding the program’s reach to different communities and cultivating partnerships with organizations and healthcare providers that foster health equity in order to reach more diverse populations. There is also space to collaborate with other cancer-related organizations such as the Latino Cancer Task Force of the Colorado Cancer Coalition to integrate Hispanic/Latinx communities experiencing cancer into the Live by Living programs. Live by Living can embrace ideas from similar programs, such as We Hike to Heal, whose foundation is built on diversity, equity, and inclusion.
All in all, Live by Living has a solid foundation of inclusion for all cancer types as well as caregivers, however, it is imperative for the organization to continue actively promoting health equity through expanding outreach, forging partnerships with diverse communities, and learning from others. With this, Live by Living can ensure comprehensive support for everyone affected by cancer.
Personal Testimony
Throughout this project, I made an effort to integrate myself into the community by hosting walks and hikes all through northern Colorado – which will be continuing all through the summer of 2024. After each Walk into Wellness, I found myself filled with pride and excitement to get back out there and surround myself with all of your positive energy. As someone who is typically outgoing and enthusiastic, I feel I have a new sense of drive and energy. As someone who is typically active and outdoorsy, I feel I have a new appreciation for what nature has to offer. Finally, as someone who witnessed mi abuela undergo breast cancer treatment before her eventual passing in January of 2015, I feel a new connection to her in the work that I do.
I feel motivated to do more since becoming part of this community. For the Walks into Wellness and Hikes into Health coming up this summer, I hope to meet even more joyous spirits and hear each and every one of your stories!
“Those who contemplate the beauty of the Earth find reserves of strength that will endure as long as life lasts.
There is something infinitely healing in the repeated refrains of nature – the assurance that dawn comes after night, and spring after winter.”
– Rachel Carson, Silent Spring
References:
1. Leach, H. J., Potter, K. B., & Hidde, M. C. (2019). A Group Dynamics-Based Exercise Intervention to Improve Physical Activity Maintenance in Breast Cancer Survivors. Journal of Physical Activity and Health, 16(9), 785–791. https://doi.org/10.1123/jpah.2018-0667
2. Brown, J. C., Huedo-Medina, T. B., Pescatello, L. S., Pescatello, S. M., Ferrer, R. A., & Johnson, B. T. (2011). Efficacy of Exercise Interventions in Modulating Cancer-Related Fatigue among Adult Cancer Survivors: A Meta-Analysis. Cancer Epidemiology, Biomarkers & Prevention, 20(1), 123–133. https://doi.org/10.1158/1055-9965.EPI-10-0988
3. Juvet, L. K., Thune, I., Elvsaas, I. K. Ø., Fors, E. A., Lundgren, S., Bertheussen, G., Leivseth, G., & Oldervoll, L. M. (2017). The effect of exercise on fatigue and physical functioning in breast cancer patients during and after treatment and at 6 months follow-up: A meta-analysis. The Breast, 33, 166–177. https://doi.org/10.1016/j.breast.2017.04.003
4. Ferrer, R. A., Huedo-Medina, T. B., Johnson, B. T., Ryan, S., & Pescatello, L. S. (2011). Exercise Interventions for Cancer Survivors: A Meta-Analysis of Quality of Life Outcomes. Annals of Behavioral Medicine, 41(1), 32–47. https://doi.org/10.1007/s12160-010-9225-1
5. Brown, J. C., Winters‐Stone, K., Lee, A., & Schmitz, K. H. (2012). Cancer, Physical Activity, and Exercise. In Y. S. Prakash (Ed.), Comprehensive Physiology (1st ed., pp. 2775–2809). Wiley. https://doi.org/10.1002/cphy.c120005
6. Friedenreich, C. M., Stone, C. R., Cheung, W. Y., & Hayes, S. C. (2020). Physical Activity and Mortality in Cancer Survivors: A Systematic Review and Meta-Analysis. JNCI Cancer Spectrum, 4(1), pkz080. https://doi.org/10.1093/jncics/pkz080
7. Harmon, J., & Kyle, G. (2022). Connecting to the trail: Natural spaces as places of healing. Leisure Sciences, 44(8), 1112–1127. https://doi.org/10.1080/01490400.2020.1712282
Links
• Online Mindfulness Classes: https://www.livebyliving.org/programs/online-programs/
• CDC’s definition of health equity: https://www.cdc.gov/healthequity/whatis/index.html
• Latino Cancer Task Force: https://www.coloradocancercoalition.org/task-forces/grupo-de-cancer-en-espanol/
• We Hike to Health: https://wehiketoheal.org
