Shockingly I was diagnosed with acute myeloid leukemia (AML) on February 28, 2024! My wife Nancy and I were devastated and had zero background or experience with leukemia. We were sent to UCLA for treatment. What a godsend!
We were terrified and had no idea what would happen. The bone marrow biopsy clearly showed leukemia’s presence. I was extremely sick and began 7+3 chemo treatment (cytarabine and donarubicin). I became sicker. Fuzzy vision, weakness, lack of bowel control, instability, incapacitation . . . all presented. In hindsight, as a leader in my career and at home, it was very difficult for me to let others take care of me. I had never been unable to personally manage, but my wife, kids, and hundreds of people in prayer, kindness, and thoughts, lifted and cared for me. I was so humbled but grateful!
I came through induction, and it was extremely rough. I have little memory of the 4-5 days following the conclusion of this phase except for what my family has described; it was as terrible as one could imagine! This was one of the most difficult things to navigate . . . what my disease and its treatment were putting my people through. I lamented that constantly, and it still pains me.
I began getting good reports; my second biopsy showed I was in remission, The Leukemia & Lymphoma Society (LLS) accepted my grant application, and the doctors were encouraging. I went through two phases of consolidation and was weak but hopeful. I was getting some time in between treatments at home, and they were life-giving! I spent a total of 53 days in the hospital from late February to June 2024.
The following merit special attention. I qualified for a clinical/trial drug called ziftomenib. It was created by Kura Oncology in San Diego just a few months before my diagnosis! Another godsend! Initially, I couldn’t make the decision about taking the drug because I was too sick to focus. However, my family wrangled with the situation and decided it was in my best interest. Thanks to Dr. Patricia Young and Amy Jacobsen NP for including me in this study. Zifto has helped save my life and is the only drug countering the NPM1 genetic mutation which stimulates leukemia. I started taking it from the onset of my illness and take it on an ongoing basis as I’m now in maintenance.
Yes, I have come through all the treatment, tests, and torment of battling AML! My final biopsy showed I’m in “deep, deep remission” per Dr. Caspian Oliai, and my MRD test came back negative. As mentioned, I’m in maintenance, and I’m mindful every day of how fortunate I am. The UCLA professional community, the overwhelming kindness of friends, topped by the incredible love lavished on me by Nancy, Matt, Dani, Alli, Megan, Jon, Patrick (my kids and in-laws), Ivy, Olive, Dax, Bodie, and Missy Boo (grandkids) has me being in this thriving place!!
Thanks for all you do and for listening!
A summary of my experience:
- We were terrified initially but put my life in noteworthy hands. UCLA doctors and nurses healed me.
- Ziftomenib, just created shortly before my diagnosis, healed me.
- Prayers, cards, money, thoughts, and sweet generosity healed me.
- A strong 68-year-old man’s body factored in walking/hiking five to seven miles four to five days a week which healed me for years.
- A family committed to my care and enduring with me through treatments and ups and downs healed me. God, in the person of Jesus Christ, constantly gave me peace and comfort. He healed me.
I am a miracle of the combination of the heavenly and earthly power which flows to anyone. I’m mindful of so many not being as blessed as I am, but my constant prayer is for others to survive and thrive on their cancer journeys. Thank you for all you do every day to try and make this happen!
Russ
acute myeloid leukemia (AML)
