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This article was written by Alan Katz who was diagnosed with AML with a FLT3 mutation in November 2020 and had a bone marrow transplant in February 2021. Alan relapsed in May 2021 and had a Donor Lymphosite Infusion in June 2021. He was able to get back into remission. He has been taking Xospata since his relapse and has continued to get better ever since and has even gone back to work part time.
If I had to choose one word to describe the last two years of my life, the word I would select is challenging. And during that challenging period of time, I learned to live my life through two simple guiding principles.
In November of 2020, I was diagnosed with AML with a FLT3 mutation and was immediately admitted to the hospital to begin treatment. I was given a 50% chance of survival, and I was informed that I would not survive without a bone marrow transplant. I was overwhelmed by the treatments that lay ahead for me. Faced with the daunting task of surviving chemo, I realized I would have to change the way I lived my life. That is when I learned my first guiding principle: I would need to live my life one day at a time. At first, I simply focused on getting through the treatment of the day and not worrying about the next day’s treatment and challenges. As time went by, I learned to enjoy each and every day of my life and finally today I find myself constantly living in the moment. I have learned to appreciate the small things in life like waking up in the morning and enjoying the fresh air.
I successfully made it into remission after induction and one round of consolidation. A perfect unrelated match was found for me in February of 2021, and I had my bone marrow transplant. Unfortunately on day +97, I relapsed and was immediately admitted to the hospital to undergo two more rounds of chemo. I was told that I had a 30% chance of surviving. That is when I learned the second guiding principle: never give up hope. I decided to focus on getting better and to not worry about my chances of survival. I successfully made it back into remission and underwent a donor lymphocyte infusion. Since then I have never looked back, and I continue to get stronger every single day.
Today, I feel it is important to help other patients cope with AML. When I was a patient, I did not have a coach to encourage me and teach me important lessons. By becoming a coach, I hope I can share my experiences and my guiding principles with current AML patients. I would like to use my practical knowledge to help them with the challenges that they are facing and to provide them with encouragement to continue fighting and to never give up.
If you are living with or caring for someone with acute myeloid leukemia, connect with a HealthTree Coach to receive personalized one on one support. Knowing you are not alone can make all of the difference. Find support, resources and hope through personal connection with a Coach.
about the author
Katie joined HealthTree as the Community Director for AML in 2021. She is a registered dietitian who previously worked at the VA hospital in Dallas, Texas where she coached veterans with blood cancer on how to use nutrition to improve their treatment outcomes and minimize cancer-related side effects. Katie is passionate about health education and patient empowerment. In her spare time, she loves to experiment with new recipes in the kitchen, spend time running outdoors and travel to new places.