Share Your MDS Story

I fell into the MDS field by chance; I stayed with a purpose. I graduated from nursing school in 2012. The first job I could find was in a small, community hematologist/oncologist office. Although it was not what I had planned, I was anxious to start working and accepted the offer. When my mother was diagnosed with cancer later that year, I was thankful for the connections I had made in the field. As a new nurse, there were so many things I did not yet know; knowledge that could have made her journey easier. After her passing in 2013, I decided to remain in oncology with plans to help others in the ways I wish I could have helped her.

My decision to work with hematologic malignancies, MDS in particular, was multifactorial. My mother was once hospitalized as an overflow patient on the myelosuppression floor. I was impressed by the expertise of the nursing staff and the sense of community among the care team. In 2015, I took a job as a registered nurse working the nightshift on the same floor where my mother had been a patient. Each time I walked by room 10601, I knew I was in the right place. Since that time, I have worked with MDS patients in both the inpatient and outpatient settings. I have assisted patients throughout each stage of their care - receiving an initial diagnosis, initiating transfusions, starting treatment, undergoing stem cell transplant, and, in some cases, deciding to stop therapy. I spent five years as a Research Nurse Specialist hoping to do my part to move the needle in MDS-related care.  

MDS is complicated and working in this field is challenging. Treatment is nuanced proving that medicine is both an art and a science. Research in the field of MDS is growing and our knowledge of the disease, to include potential treatments, is rapidly expanding. As a nurse and fulltime patient advocate, it is my goal to work alongside patients, their family members, and caregivers to navigate the complexities of the disease and encourage them to take an active role in their healthcare.

I see the best people on their worst days. They have questions, fears, and doubts. I do my best to provide comfort and answer questions; however, I have found that my patients are far better teachers than I could ever be. I teach them about antibiotics, antiemetics, and chemotherapy. In return, they teach me about the important medicines of life such as laughter and humility. I explain that there are side effects of the regimens we use; they teach me that there are consequences to the decisions I make. I try to teach my patients to make choices that make their hearts healthy, but they teach me to do what makes my heart happy. My patients teach me that life is precious, everyone is human, and nothing is impossible. Someone once told me that I spend too much time with my patients and that may be true; however, that is why I chose to be a nurse. Patients have stories, not just diagnoses. Patients have names, not just room numbers. I don't know that I'll ever make a lasting impression on the people I help take care of, but I know that I am a better person because of the things I have learned from them.

I make an effort to pass these lessons down to my children. My husband and I have a blended family of six children. They all know that my work is more than a job; it is part of who I am. My family has been there as I completed nursing school, worked 12-hour shifts that turned into 14, and took on different roles with the care team. I appreciate their sacrifices more than they know.

If I could give one piece of advice to all those impacted by MDS, it would be to give yourself some grace. Some days are hard and that is ok. When one day at a time is too much, slow down and take it minute by minute.  Take care of yourself and do so without guilt. To the patient struggling with debilitating fatigue, to the caregiver juggling all that is expected, and to the healthcare provider who still feels behind despite working long hours: know that your best is enough. MDS takes so much from you; learn to focus on what is within your power to change. We are given too much time to do nothing with it, but too little to worry about those things which are beyond our control. Also, you are never alone; we are all in this together.