Survivor Ed Irwin, of Macon, talks about his journey with acute myeloid leukemia and the care he received from his cancer team at Northside.
My name is Ed. I am a biomedical engineer, primarily focused on the cognitive and biomechanic effects of work, aging and disability. I was born in 1960; so before Leukemia happened to me my wife Elizabeth and I had seen our three sons grow up, start their families and careers, and leave us to begin building our post-middle age lives together. At age 57 I enjoyed excellent health – swimming a mile, four days per week, and working full-time as an engineer and research scientist.
I knew something was wrong one morning when I could not complete my swim. My family doctor and friend, Dr. Paul Mossman, took blood for labs and I went on my way. But when he called later and said my white blood cell count was below normal, I realized life was going to change dramatically. He referred me to Northside Hospital Cancer Institute in Macon, where they verified I had developed acute myeloid leukemia (AML) and made an urgent appointment for me with The Blood and Marrow Transplant Group of Georgia at Northside Hospital in Atlanta.
I had never experienced the speed at which the medical system can operate when needed. One day I was working, exercising and enjoying my three grandchildren alongside Elizabeth; then the next week I was inpatient on the blood and marrow transplant (BMT) ward at Northside Hospital in Atlanta. It was surreal. I spent the intervening time researching AML variants, treatment options and survival statistics, and planning for what looked to be an intense and protracted recovery process.
My AML variant was determined to have intermediate risk of death in the short-term. It required aggressive treatment involving complete elimination of my bone marrow cells, with replacement through stem cell transplantation from an allogeneic donor – in my case, one of my sons. All three boys volunteered, but only my youngest son Zachary was in the continental US. He and his wife live nearby in Birmingham, Alabama.
What a gift! I worried about the pain he might have to endure to retrieve stem cells from his bone marrow, but the doctors were able to just stimulate extra stem cell production with an injection and harvest the cells from his blood. After my bone marrow cells were eliminated with chemo and radiation, Zachary’s cells were given to me as an infusion.
It’s no exaggeration to say the physicians at Northside are the best in the country, if not the world, at treating blood-related cancers. From customized treatment plans based on genetic markers to research-based post-transplant care protocols developed through their own research efforts, the team of doctors at BMT provided comprehensive and highly responsive care at every step. My primary doctor, Dr. Asad Bashey, impressed me with his caring demeanor, his encyclopedic knowledge, and his ability to give Elizabeth and me realistic milestones that proved incredibly accurate.
I cannot say enough about the care I received at Northside. The nursing staff cheered for me and encouraged me through every arduous step, from shaving my head when my hair started to fall out, to giving me advice on yoga meditation, to celebrating every lap I walked around the infusion clinic pushing my IV pole. The medical assistants who collected daily blood samples always had a smile and a word of encouragement for me. My nurse practitioner, Michelle, gave birth to her first child during the same period I received my stem cell transplant. Now we chat about how Stuart and I have the same (re)birth month. The support staff even helped Elizabeth and me find a rent-free apartment near the clinic when I was discharged from the ward, so she could bring me to the clinic every day.
Elizabeth was, and remains, my bedrock foundation. She slept every night on what had to be the world’s most uncomfortable pull-out, while I was inpatient. Then she helped me through the debilitation and recovery from chemo and radiation – always pushing calories, fluids and medications and watching out for signs of infection or graft-versus-host disease (GVHD). It must have been exhausting and frightening at the same time. With all this, she still found time and energy to make hand-made quilts for loved ones and to keep our friends, family and extended community abreast of our journey through social media and blogging. I don’t know how I was fortunate enough to have such a sweet, strong, caring woman beside me through all this. I just know I am immensely grateful.
That gratitude extends to my community of support – my tribe, my peeps, my friends, my co-workers. They are the ones who visited, phoned, brought books, sent pre-paid gas cards, or even just emails of encouragement. The director of Mercer Engineering Research Center, the company I work for, kept my job open for me and provided whatever work I could handle during my recovery so I could maintain a path back to normalcy at the pace my body could manage. One dear friend even took Elizabeth and me into her home in Forsyth for eight months, while we worked through how to put our lives back on track.
Here we are, almost five years later, in full remission and back to our pre-leukemia life. With the exception of some effects from chronic GVHD, my health is excellent. I swim four days per week – I hope to reach my pre-leukemia distances in the next month or so. I am working full-time and putting my research projects back together after the enforced absence. It feels great to have my body and mind working like they were before.
Elizabeth and I have six grandchildren now, with one more due in September. It is an amazing gift to see my family grow and to be present for so many milestones I might have missed. Together, she and I travel, play with grandchildren, and birdwatch whenever I am not working. I have promised to retire in 2028 so we can do more of that. I look forward to new adventures with her – hopefully with a lot less life-threatening potential than Leukemia.
*The health story shared here may portray atypical results of survival for this type of cancer, given its severity and stage. Atypical results are considered surviving a cancer that has less than a 50% five-year survival rate. Patients should consult an expert to discuss specific treatment plans and the possible outcomes before making medical decisions.
