This article was written by Steve Hodges, who was diagnosed with AML in 2022 and just recently had a bone marrow transplant in February 2023.
In May of 2021, I was busy doing what I like best after retiring: volunteering for the hospice patient/family council, playing the piano for hospice and at the hospital, serving on the board advocate for the North Carolina Symphony and Triangle Youth Music, and enjoying my grandchildren with my wife. I had volunteered to be part of a Duke research study when I got a call from a doctor I didn’t know on her personal cellphone on a Saturday afternoon.
“Mr Hodges, this Dr X from the study. I called to let you know we can’t have you come in Tuesday, because your labs on Friday showed that you have a dangerously low level of platelets. I want you to promise me that you’ll contact your primary care provider first thing, Monday morning.“ What followed in the next weeks was a series of tests, a bone marrow biopsy and another call from a hematologist I didn’t know with the words “You have Acute Myeloid Leukemia, it needs to be addressed right away and we made you an appointment with oncologist Dr Thomas LeBlanc, day after tomorrow.”
That’s how I found out I had AML. I was fortunate to find out long before any symptoms, so we could do a full biopsy work up before acting. That included flow cytometry and DNA sequencing, with time to evaluate results before entering the hospital with known mutations (three adverse) and a fully vetted treatment plan. I was very lucky.
My AML is resistant. There are a few MDS indicators but not enough to confirm. I needed two inductions (7+3 and FLAG) and then two consolidations followed by two more chemo cycles (azacitidine with venetoclax) before getting a bone marrow transplant February 28, 2023. I’ve been delighted by the very careful, studious and meticulous planning of my team. I’m a strong advocate for my care and I believe we all need to be the best self-advocates we can be. Most of my self-advocacy has been applied to challenging systemic health issues including low or no communication on occasion, confusing messages, and determining Who-Does-What among the various medical team members. I’ve also asked and researched plenty of questions about my treatment and prognosis. I want to know it all, but not all at once! Both my wife and I have studied the disease as though my life depended on it (okay, maybe it does!). I stick up for myself, as does my wife on my behalf (she’s my secret weapon).
As my wife and I studied this rare disease, we’ve most often listened to podcasts and attended live sessions sponsored by LLS and especially HealthTree. The podcasts are “must listens.” Also, HealthTree University education modules are simply outstanding and are best in class to learn about AML in bite sized modules. Every single thing we have learned, we’ve used. I think education is the biggest arrow on our quiver as we fight this disease.
Both my wife and I have got therapists to help deal us with AML. They walk us through our own thoughts about the disease, to address how it affects our family and friends. I also decided to journal my story as well, which has been invaluable for our friends and acquaintances to know where we are without texting, calling or hounding us in this busy and sometimes upsetting time. It’s not a bad thing for me either, as looking back over my past entries gives me context sometimes badly needed. Friends love it. Do they have a morbid curiosity? Sure, it’s unavoidable because AML treatment is dramatic. But more than that, they care. They suffer when they don’t know how I‘m doing.
Why Steve Became a HealthTree Coach
HealthTree’s Coach program is an exciting new entry to the field because of their amazing education resources, clinical trial help and access to the latest research and best educators. I spent my working career in IT for 42 years, so I value honesty and facts about the clinical aspects of AML, spoken in plain English. You get that here. I see the Coach's role as helping to educate but at the pace of patient interest, not like a fire hose. I also see coaching as being a tour guide, to help you find out about not just the clinical aspects of the disease inside a complex health system, but also how to leverage the social and psychological realms to greatly increase one’s resiliency.
In the psychological realm, an AML diagnosis and the treatment that follows generate great fear, especially among our most loved family members. I’m still dealing with the shift from being a rock, a supportive and loving spouse, father, brother and uncle, to suddenly becoming, myself, the source of their greatest fear and concern. It’s a helluva change. We need to act to understand and accept our diagnosis and how our relationships unavoidably change as a result.
In the social realm, our connections with community and friends can suffer when dealing with AML. And yet, it’s a proven fact that social connections are a powerful antidote to pain. The field of pain’s most effective vocal advocate, Dr Rachel Zoffness, asks us to consider how you’d feel if you’re at home in the kitchen and drop a heavy glass on your foot in flip flops? It hurts a LOT; maybe you sit down and use a few choice words. But drop the same glass on our foot while at the ice cream parlor with friends - you squelch the pain and keep having a good time. Pain goes with AML - the pain of knowing what we have, the pain of procedures, the sickness and tests we face. It hurts a lot less if we have social connections. Connections may need to change when we can’t safely be around lots of people in person. How? The answer must be built and tailored to each of us.
This disease is not easy. Initially I wanted to pay it forward, but I’ve been so lucky and received so much love and care from others that at this point, I want to pay it back! I hope others who feel similarly will join me. How can I help you?
Join HealthTree Coach for AML
If you are living with or caring for a loved one with AML and have a desire to help others- consider volunteering as an AML Coach. Sharing the knowledge and experience you have gained empowers others and provides hope. Initial and ongoing training and support is provided to all Coaches. Coaches are asked to volunteer for a minimum of eight hours a month for up to a year.
If you are looking for a Coach to help you, create a HealthTree account on the Coach website to look through Coach profiles and request to work with someone.
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.