The International Myeloma Foundation continues to share this collection of patient and care partner stories from those who have completed the Legislative Advocacy Master Class (LAMC). The IMF hopes that these unique and compelling stories will help raise awareness about the disease, inspire action, and make an impact in changing healthcare laws and policies for the betterment of the myeloma community.
(EDITOR’S NOTE: The Legislative Advocacy Master Class is a 12-week immersive advocacy training course, and a combined collaboration between the International Myeloma Foundation and Patients Rising—"a leading grassroots patient advocacy organization seeking comprehensive policy solutions that puts the patient experience at the forefront of addressing America’s biggest healthcare challenges.” The stories in this blog series were taken from the now-completed second class, where participants submitted their stories as final projects to graduate from the course. The LAMC is an ongoing effort to train advocates for the IMF to tell their stories, write a letter to Congress, and make an impact in changing healthcare laws and policies. If you have questions or inquiries, or if you would like to sign up for future LAMC courses, please email Michael Riotto at [email protected].)
This week’s blog was written by Amy Bailey, a myeloma patient living in Sacramento, California. Here is Amy's story:
In July of 2022, I was diagnosed with the rare blood cancer multiple myeloma. I was 46 years old at the time. I live in Sacramento, California, with my husband Ryan and children Emma (19) and Jordan (17). I have always had an active life and enjoyed exercising regularly, hiking and playing tennis, volunteering, being involved in community and church, leading my daughter’s Girl Scout troop, and working for the State of California as an Analyst for the Department of Social Services. There was nothing that could have prepared me for this life-threatening diagnosis.
Facing My Diagnosis
In January 2022, I began having symptoms of fatigue, back pain, and anemia. In June, my symptoms worsened, and I started having uncontrollable back pain and spasms that sent me to the hospital. Fractured vertebrae were found up and down my spine. Further testing led to a devastating diagnosis. Despite multiple myeloma being treatable, there is currently no long-term cure and relapses are inevitable.
Recovering from Debilitating Back Pain
I began a month-long stay in the hospital, trying to get relief from debilitating back pain that was caused by the cancer eating my bones, starting chemo treatment, and dealing with troubling complications. My initial treatments were successful in reducing the myeloma and back pain, and I was able to return home to my family.
Undergoing an Autologous Stem Cell Transplant
Two months later, I began the intense process of preparing for a stem cell transplant, which involved many tests, injections to promote stem cell growth, and a procedure to harvest stem cells called apheresis. This was an intense preparation, but the most difficult part was spending two weeks in the hospital away from my children and enduring the effects of a chemotherapy treatment called melphalan.
The result of the stem cell transplant was a partial remission. As my physical symptoms improved, I had space to deal with the reality of this disease, both mentally and spiritually.
How I Found My Resilience
My faith, determination, and loving support of many friends and family has helped me to be able to face each day with gratitude, courage, and a greater dependence on God. Some days it is easier than others.
Currently, I am in remission and on a maintenance chemotherapy drug with manageable side effects. I strive to continue to get stronger and renew my active lifestyle despite a fragile back and fatigue.
I have walked two half marathons in the last year and have even started playing a little bit of tennis. I want to be able to live a fulfilling and healthy life with my husband and children. I’m hopeful that by the time I relapse in the future, there will be even more treatment options available—and maybe even a cure for multiple myeloma—thanks to ongoing research and continued funding.
