Jessie Daw

multiple myeloma coach since 2020

I was diagnosed with smoldering myeloma in late 2016, after a few years of having increasing severe respiratory infections every 2-3 months. I live in South Dakota, and see a local onc/hem doctor quarterly, with one of those quarterly visits replaced by a trip to Mayo Rochester to see a specialist. I considered some clinical trials early on in my diagnosis, but haven't entered one. My numbers have remained pretty stable since diagnosis. Recently, I went through full work-up for amyloidosis, and that was negative :-). I changed some things in my life in the year after diagnosis, including leaving my job and focusing on quality of life issues. In that respect, this diagnosis has been a blessing. Of course, I'd rather not have the diagnosis, but it spurred some changes that I don't think I would have made otherwise, and I feel like my life is richer because of those changes. I have become involved in patient advocacy, as I started South Dakota's first myeloma support group. I also have participated in an MMRF Moving Mountains for Multiple Myeloma event, and I really enjoy serving as a Myeloma Coach. I value the time I get to connect with others who have myeloma. We all have our challenges, and connecting with others around those challenges, as well as the good things in our lives, is really meaningful.

Kenny Capps

multiple myeloma coach since 2020

I was diagnosed with multiple myeloma in 2015. After decades as an athlete of questionable ability, cancer changed my perspective and I focused on quality-of-life solutions. After a bone marrow transplant, I focused on distance running, cycling and swimming once again. I discovered a coping mechanism and a way to combat pain, fatigue, and treatment side-effects through purposeful movement and (mostly) focused nutrition. In 2018 I ran across the state of North Carolina on the Mountains to Sea trail. I ran 1,175 miles in 54 days averaging 22 miles a day while undergoing maintenance chemotherapy. Today, I am still fighting cancer with daily chemotherapy and still training for ultramarathons and epic adventures. I am the Executive Director for Throwing Bones (throwing-bones.org), whose mission is to encourage all blood cancer patients to stay healthy and active through treatment. I was educated at the University of Georgia (AB) and the University of Denver (JD). I am married and have three children, ages 19, 15, and 6. They drive me crazy and make every day better. I advocate for all individuals living with blood cancers, and want to encourage them all to keep moving forward. Every day is another opportunity to take a step. Being active is one of the ways to stay ahead of life and to enjoy it more.

Bonnie Falbo

multiple myeloma coach since 2020

I have been my 74 year old husband's patient advocate and caregiver since we started this journey in 2008 when he was diagnosed with MGUS. In 2016 he progressed to high-risk smoldering and then active myeloma in 2018. In June 2019 he had an autologous stem cell transplant followed by lenalidomide maintenance and he also participation in a Vaccine Trial. After a very slow biochemical progression over the past year, he started DPd. Throughout the years I have been by his side, using the skills I have learned as a Physician Assistant, Wellness Coach and Personal Trainer to be his advocate, educator, caregiver and skilled listener. With my medical background I know how doctors think, which enables me to help you prepare for appointments and get the most of your precious time with your doctor. I can help you succinctly present your whole health/personal lifestyle picture and organize your questions in a way that will engage your doctor and stimulate discussion. My medical training enables me to review labs and reports with you and help you learn what information is important to track. I can also help you sort through differing medical opinions to develop an approach this is right for you. In addition, I can help with research on Medicare supplements Part B and Part D. I have a passion for educating and coaching people and I feel privileged to partner with myeloma patients and other caregivers. I understand how complex and confusing this disease is and know that sometimes despite the best intentions of friends and family it is helpful to talk to someone who "gets" myeloma. I especially want to offer you compassionate listening and an opportunity to have a time and space that's private and just for YOU. We live with our furry kids, Yukon the dog and Peakahn, the cat. I'm a native New Yorker and former WDC resident, who now enjoys the beauty and tranquility of the Blue Ridge Mountains of Virginia.