I attended ASH for the first time last year. My goal going into ASH16 was to inspire and offer hope through blogging and tweeting my experience. The most promising take-away as a first-time attendee and relatively new patient was that there are many champions in the field working on our behalf to improve quality of life, increase life expectancy, and ultimately find a cure for myeloma.
Now that my perspective of ASH is clearer and I’m better familiar with my role as an International Myeloma Foundation (IMF) representative, my excitement for attending is even greater this year. Like last year, I am honored to attend on behalf of IMF as a support group leader and myeloma patient.
As I reflect on last year’s experience, I left with a heightened awareness of what it means to be a leader, advocate, and patient. My post-ASH16 goal was to launch to a higher degree of actionable hope. Since ASH16, I (along with my co-leader) have been inspired to impact my support group and the greater community through various awareness activities centered around Multiple Myeloma Action Month. I spoke on behalf of our support group at a Charleston City Council board meeting where we received a proclamation for Multiple Myeloma Awareness Month. I was also featured as a guest on a local morning television news program highlighting myeloma awareness. In addition, I distributed myeloma educational information and pinned ribbons to parishioners of the largest African American Baptist Church in Charleston. These were all done in an effort to reach large populations and impact greater numbers.
Eight months ago, I made a very difficult decision to retire a 27-year career as a Registered Nurse/Nurse Practitioner/Assistant Professor. It’s a decision that although was medically necessary, is emotionally arduous. The majority of my 27-year career was dedicated to caring for children, adolescents, and teenage mothers and their babies, as well as the elimination of health disparities affecting them.
During the last half of my career, each year I attended scientific and health science meetings as a nurse practitioner and/or professional. I conducted and presented on several health disparities and community-based research abstracts and papers. However, attending a scientific meeting as a patient is a very different experience than attending as a professional. Attending as a patient was very humbling; every session attended directly impacts and relates to you.
In preparation for ASH17 and this blog, I experienced an aha moment. Life has come full circle in so many ways. Little did I know how a personal diagnosis of multiple myeloma and a pediatric nursing career would intersect. I am in awe of how all things work together for a greater cause. Myeloma has definitely proven to be bigger and greater than ‘me’. So many of my life experiences and challenges have prepared me for this diagnosis. Likewise, I am recognizing just how my career and ASH attendance has also come full circle.
ASH16 brought light to the realization of health disparities in multiple myeloma. It was such a significant topic for me that I wrote a blog that expressed my thoughts on the need to become more aware, and the work that is needed so that all myeloma patients experience hope for their progression free and overall myeloma survival journey.
Attending ASH17 gives me the opportunity to bridge both passions, life before myeloma (a career exploring racial and ethnic health disparities) and life after myeloma (advocating and empowering myeloma patients/caregivers). So, this year, I feel a sense of obligation to do my part to become more aware and to increase awareness. Therefore, at ASH17, I will focus on better understanding and increasing awareness of the racial and ethnic health disparities of multiple myeloma.
The constructs that contribute to disparities and outcomes in myeloma (and any health condition) can be complicated and sometimes uneasy to discuss. Disparities in myeloma is a reality, but there are so many reasons to be hopeful. I believe that I can be more effective in the plight of awareness and support when I better understand the problem.
I look forward to sharing my perspectives of hope with you through tweeting and blogs during ASH17.