Founder/CEO Greg Stephens, CML’ers Justin Ozuna and Marti Davis, and caregivers Katie and Tamara at OMG2013!
The National CML Society is spending the weekend in Las Vegas for the 6th annual OMG! Cancer Summit for Young Adults! OMG! is the premiere oncology conference and social networking event for the young adult cancer movement. As the largest gathering of young adult patients, survivors, caregivers, advocates and professionals in the world, OMG! provides three days of community and information from over 50 oncology experts via 25 unique breakout groups. Representatives from the NCMLS include Greg Stephens, Texas representative Justin Ozuna, and caregiver, Katie Narvarte.
Gaming and the ePatient Revolution
In a discussion hosted by Stupid Cancer CEO, Matthew Zachary, Shwen Gwee, Chief Digital Office at Chandler Chicco, and Richard Tate, VP of Communications and Marketing at Hope Lab, discussed how patient advocates are taking to the web, using digital tools to improve health information services and physical relationships.
As patients become more accustomed to the digital world, they are seeking information in new ways. This is considered the growth of the ePatient, the empowered, engaged and active self-advocate who embraces technology as a tool during their medical experience. The challenge for the healthcare industry is determining what kinds of technology are being utilized and how to develop interactive tools and communities to benefit the ePatient.
It’s no secret that adherence to treatment is the number one issue with the young adult population. The gap between remembering to check Facebook, Twitter, or other social media sites numerous times a day and forgetting to take medication is one that can be narrowed by applying and leveraging addictive qualities of the latter to treatment patterns. Rewards are significant to changing behavior and can be used in positive ways.
As a solution, Gwee and Tate presented the concept of gamification, the use of game thinking and game mechanics in a non-game context in order to engage users and solve problems. HopeLab uses the concept of gamification to positively shape the treatment patterns of young adults. By engineering Re-mission 2, a game that is fun and highly entertaining, information about terminology, treatment response, and the significance of adherence can be presented in the context of experiencing a different perspective. verything became reframed. Weapons became the tools to fight cancer. The attitude shift changed the way young people approached treatment.
As media continues to evolve, statistics are starting to show that immersing young adult patients in online communities and gaming experiences has a significant effect on consistent adherence and positive treatment outcomes. Visit Re-Mission2.org to learn more about the research behind these statistics and to play the game, which is also available as a mobile app.
Complementary Medicine & Healthy Living
This breakout was designed to introduce integrative treatment, the effects of nutrition on cancer, and the Cancer to 5K program. This session was presented by Dr. Brian Lawenda, Clinical Director of 21st Century Oncology, Carolyn Lammersfeld, MS, VP of Integrative Medicine at The Cancer Treatment Centers of America, and Laura Scruggs, Program Director of Mission Engagement for the Ulman Cancer Fund for Young Adults.
Integrative medicine is the combination of conventional treatments, therapies, and alternate lifestyle counseling. The three pillars of integrative oncology include nutrition, exercise, and stress reduction. Stress is the first component of chronic inflammation, which is the driver for every disease we know. Cancer loves when we are stressed. Long term stimulation from chronic stress secretes cortisol and adrenaline, which increase insulin and blood sugar, free radicals, suppresses the immune system, shuts off cancer fighting genes and increases tumor growth factors.
Methods of stress reduction include, but are not limited to, breathing exercises, meditation, acupuncture, exercise, aromatherapy, cognitive behavioral therapy. If able, exercise should be an integrative part of the cancer experience. The Ulman Cancer Fund has a Cancer to 5K program, which encourages physical activity. Visit the website for more information.
Forget Me Not: Caring for the Caregiver
During this session Jenny Greenfield, oncology social worker at Rocky Mountain Hospice; Rob Harris, caregiver and author of We’re In This Together; Kreithchele Barnard, caregiver and founder of No Matter What; and Tonia Farman, caregiver and founder of Athletes4Cancer discuss the importance of caregiver health during and after treatment.
While you can’t stop the impact of cancer on your loved one, there is a great deal that you can do to take responsibility for your personal well being and to get your own needs met, through and/or beyond the diagnosis.
Caregivers often neglect their own physical and emotional health in lieu of the unconditionally supporting the patient. While there are many reasons behind this neglect – not enough time, not wanting to leave the patient, not feeling validated in caregiver struggles – the truth is that your patient’s quality of life is directly related to your own. As the patient sees your health declining, they may feel responsible, sad, stressed, etc., placing more burden onto them, instead of relieving it.
Besides the general “take time for yourself” advice usually given to caregivers, Rob Harris had the unique advice to “focus on the present, and how to help each other in the moment.” So – instead of worrying about the impact of a bad diagnosis on your future, focus on how to make the present moment bearable (or even enjoyable). For instance, after Rob’s wife Cindy had her leg amputated, he played “Hearts on Fire” during her physical therapy sessions. During their year-long hospital stay, he fondly remembers playing pranks on the medical staff. He asserts, “You won’t get arrested for laughing in an oncology waiting room!”
Tonia suggested one simple step to improving emotional health – starting a gratitude journal. Nightly she writes three things she’s thankful for that day, which can range from the smallest blessing (a great cup of coffee) to the greatest (another day with my loved one). Check out all the resources for caregivers at Rob’s site: www.Robcares.com.