Who I Am

I’m probably most known for my passion for life. That extends to enjoying living, my family, music, and sports. I’m pretty passionate and can be moved by the things that I love and enjoy.

Our Love Story: Meeting My Wife in 1976

Nancy and I met in a nightclub back in 1976. I went to this nightclub with a buddy. I saw him dancing with a hot blonde while I was standing against the wall with a beer. I said, “Man, if he doesn’t ask her to dance again, I’m going to swoop in.” He went left, she went right, and I dashed right in and put my arm around her. I said, “Would you like to dance?” and we have been dancing for 48 years.

Marriage Through Cancer: A Bond Forged in Suffering

My family all thought they were going to lose me, and I have a significant place in our family system. Never having gone through anything of this kind, it was such an emotional devastation to my wife and to my children. My wife stayed strong for my children. She was there for them, but she was there for me, too, and she was as determined as I was to see me well. We both felt like we had life to live.

I never winced once about having cancer. I never cried about it. I just said, “Okay, what have we got to do?” and my wife was the same, right there by me. Our love has deepened as a result of that. Love deepens if you allow it to, and our marriage and relationship are in one of the best places they have ever been in our lives. It is a bond created through suffering that is real and absolutely unbreakable.

My First Red Flags Before My Diagnosis

I had been at a local hospital for two other stays before I went to UCLA. We thought I had the flu. I was on the couch for a couple of days, but I wasn’t getting better. I had a lot of flu symptoms and fatigue. Then I had a real blood pressure drop, which was scary for both of us. We called our primary care physician and she said, “Go to the hospital.” I was in the hospital for the first stint. I’m sure I was a bit dehydrated. They gave me an IV, kept me under observation, ran some tests, and sent me home with no diagnosis.

Over the next three weeks, I knew something was wrong because I couldn’t walk from my car to my house without being exhausted. The fatigue factor was profound. I would lie on my wife’s lap and say, “I am so tired.” I was so down. My primary care physician had me take a blood test, and it came back with my white blood cells at about 40,000. She said, “Get right to the ER.” I went back, and they diagnosed me with acute myelomonocytic leukemia (AMML) at Providence. They diagnosed it, but they do not treat it. They told me I needed treatment that night.

I cannot tell you the sheer shock. It was surreal, but I felt this peace come over me that said, “Okay, we have to deal with this.” Meanwhile, it was like shock waves running through my family, and I was trying to maintain for them. The shock was real, but the main red flags had been flu-like symptoms and serious fatigue that ultimately led to the diagnosis.

A Primary Care Doctor and Wife Who Advocated Hard

My primary care physician was very much on top of things and advocating for me. She was in our corner and treated me with what she knew. When the blood test came back with the accelerated white blood cells, she said, “Get to the ER right now.”

It takes a lot to get me to go to the hospital. I tend to be a little bit too chivalrous or stubborn. My wife was also really urging me. She was consulting Doctor Google, researching and reading, and she did not like what she was seeing. It did not take much for her to get me going as well.

That moment was surreal and mind-boggling. Nancy was very afraid, and so was I. We’re older, so when I heard the word leukemia, I always thought of death. I asked the doctor, “How long do I have?” It was like going from 0 to 100 — from just living life to, “What?!” A peace settled on me. I cannot say I was fearful. I was more asking, “What is this, and how do we get after it?”

I had no idea at that point that without the clinical drug, there wasn’t much of a treatment opportunity. We were caught flat-footed and knew nothing about it. We have an education now, believe me. My wife was very upset, unhappy, and concerned. We held each other, moved into the discharge process, went home, picked up a couple of things, and drove down to what we thought was USC Medical Center.

Insurance Rejection and Being Turned Away While Needing Treatment

I was in a back room getting tests, holding paperwork that the Providence doctor had given me. He said, “Show this paperwork and you will get admitted anywhere.” That wasn’t the case. I had to go through all these tests. I spent seven hours in that back room waiting and talking.

At the end of seven hours, a financial manager asked me to come into an area. She said my Medicare Advantage plan did not sync with their public funding, so they couldn’t treat me there. We went from 0 to 100, thinking we would go there and get treatment. We had prepared for that. Instead, she basically said, “You will have to leave. We cannot treat you here.”

We Had to Pivot to UCLA

I knew nothing about a biomarker at that point. I was just trying to remember the name of what I had. I was not “AMML-ing” it very well. My oncologist at Providence had told me, “Pretend that you’re very sick at UCLA.”

We arrived and waited in a tent outside in a parking area and it was cold. When I got in, the UCLA ER looked like the ground zero of a battle. There were people everywhere, gurneys, IV drips — everything. I went through a variety of stations, and my wife Nancy and my daughter Ally came with me. At one point, I was really in anguish — or pretending I was — and really doing my best to make myself seem very sick. My daughter Ally asked my wife, “Is Dad really hurting that bad?” I pulled down my mask, looked at her, and winked, so she knew I was not that bad.

They told me they were going to admit me, but didn’t know when. They put me on a gurney in a long hallway with bright recessed lighting. It was like a traffic jam on the freeway — gurney after gurney wrapped around the building. I don’t even know how the doctors and nurses kept track. I received good treatment there; they checked on me, made me comfortable, and did more tests.

First Time Hearing About the Biomarker and Clinical Trial Option

My first oncology doctor came to check on me and talk with my wife, my daughter, and me about the possibility of a clinical trial drug, of which I was thoroughly uninitiated. I didn’t know what a clinical trial was or how it would impact me. At that point, I had an IV pole with about 10 different bags running into me. I’m not a big pill-taker, and I had lost control of my life. All these choices were being made on my behalf. I was just along for the ride.

I remember her talking about this drug. I don’t remember her using the word biomarker. She talked about a mutation. That was the first time I heard anything about it. She said it would be very exciting if I qualified because of the NPM1 mutation. That was the first time my family and I heard it, but then nothing more was said for several days, until it actually got in motion.

I was in a bad way, dealing with the seven-day, round-the-clock 7+3 regimen. I had a rocky five or six days. While I was struggling, the clinical drug decision process was going on. My daughter and her husband had done a deep dive into the drug, and my wife had a close family friend with bladder cancer whose life was saved by a clinical drug. Between their research and that recommendation, my family moved toward the trial, even though others initially did not want me to suffer more after hearing about the side effects. My son and my other daughter relented, and we decided to go for it.

Learning to Live Around the Trial Drug Schedule

I tried to get them to give me the pills at the same time each day. You couldn’t have anything in your stomach two hours before taking them and then an hour after. It felt like madness. I tried to get them on a routine: “I will have lunch, you come in at 4 p.m., give me my pills, and I will have dinner at 5 p.m.” It took a week to get them aligned.

At that time, I followed the timing rules very strictly. Now I fudge here and there. They have since told me they don’t know exactly what should be done regarding food intake, because food actually integrates fine with the pills. Waiting two hours before and one hour after may be overwrought. I was very fastidious about it then, though.

How I Think About Clinical Trials Now

For me, the clinical trial has always been a very positive point of reflection.

I came to understand how rare my cancer was and that there wasn’t much that could be done without this drug. Once we started, I never wavered about being part of it. I felt I was helping, and now a drug related to mine has become FDA-approved. The company that manufactures it has been gracious and kind to me because I was one of the first people to take the trial drug upon diagnosis. The FDA approval initially came for those who had relapsed, but they saw the drug work in me at diagnosis.

I felt it was a real privilege and I was very grateful. I told the company, “Anything I can ever do for you, I will.” I have done some speaking for them. I felt good about helping others, forwarding healing for people coming after me. When I reflect on it, I’m always glad to be part of it and willing to do anything I can to further healing for others.

Having Extra Eyes on Me

Being in a clinical trial means there are extra eyes on you — extra monitoring, extra visits, and extra biopsies. That hit me early, and I took to it like a duck to water because I felt it was part of my recovery. My wife and I have to drive down to UCLA on a major thoroughfare and fight traffic. It’s not always convenient, but my feeling is that we need to be the best patients, the most pleasant, and grateful people we can be. Let the eyes be on me.

I welcome that because it gives the team more data and information. It can help with this nasty disease. I jokingly call myself the poster boy for this clinical drug because I was one of the first to get it upon diagnosis, so they watch me very closely. I embraced my poster boy responsibilities.

Learning About My NPM1 Mutation

The process of discovering the mutation and biomarker was not discussed with me at the time. They did the tests and used the results to guide my treatment.

Later, one of the doctors in the entourage wrote everything down for me on a sheet of paper: the NPM1 mutation, some details, and clarifications. I still keep that piece of paper on my desk. It was the first time I truly understood anything. Up to that point, everything had been verbal, and it did not fully land with real cognition. That paper was a breakthrough moment for me.

It was also the day they told me I was in deep, deep remission. I had never heard of anyone being in “deep, deep remission,” only remission. My oncologist called it “deep, deep,” so I quote him on that. The paper is special because she took the time, on her own initiative, to write it out and make it clear to the degree a layperson could understand.

Keeping lines of communication with the care team open is crucial, but it’s hard for one person to hold all the information. My wife was so focused on me that she did not understand a lot either. My oldest daughter became an advocate, but she eventually had to drop off because she has a family and responsibilities. During that first month, she was all over it by helping explain, fielding conversations, and taking on discussions I couldn’t have because I wasn’t well enough. My wife was too concerned about me to shoulder it all.

It’s a reality that some doctors’ personalities are not geared toward the communicative side. Family members or advocates who can help digest and interpret are incredibly important.

There isn’t much dialogue about the future because it is unknown. My oncologist looks at me and says, “Russ, you’re doing good, man. Keep it up.” He is the director of stem cell research and training at UCLA. He did not push me in that direction, even though it would have been natural. He walked with me and watched me. He told me I had options, which many people do not have. He laid out my options but didn’t tell me what to choose. That was up to my family and me.

Living at the Intersection of Faith and Science

I live in the sweet spot of the intersection of faith and hope. You need people praying for you and a community around you. You want to consider spiritual truth to build your faith and strength to fight your disease.

However, do not allow faith to short-circuit your belief in science. A drug was made for me at the right time in my life that saved my life. God blesses great minds with creativity and the ability to do great things for their fellow human beings. Take advantage of that. Where those tools overlap, live your life in the sweet spot of faith and science.