I have had to come to terms with my own mortality three times in my life and I’m only 46. When I was 17, I was diagnosed with end-stage renal disease and experienced renal failure 2 years later. I underwent my first kidney transplant at 21, just before starting medical school. Finally, I thought my life could begin. While in medical school, I met my wife, Jennifer, and we later moved to Ohio so I could start my residency in general pediatrics and we could start our family. I subsequently completed a fellowship in neonatal-perinatal medicine at Nationwide Children’s Hospital in Columbus.
Over the next 13 years, my health was stable, my career was progressing, and I was focused on my future. In 2008, right before Christmas, I was invited to attend a meeting in Vienna on improving global outcomes in kidney disease. I took Jennifer and our 2 children, Nate, then 7, and Sophie, then 3, on the trip so we could enjoy the majesty of the Christmas season in beautiful Vienna and spend a few days skiing. I had taken an aspirin to squelch a headache that had plagued me all day and, really, when I thought about it more, for the previous few months.
“The years haven’t washed away the fear I felt after each near-fatal illness, and keeping that experience of being a patient alive is making me a better physician.”— Trent E. Tipple, MD
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Later that evening, while we were shopping in a jewelry store, I suddenly fell to the floor unconscious. I had a seizure and was taken to a hospital. My medical training told me I had a brain tumor, which an MRI later confirmed. I wasn’t even 36, but I remember thinking my life could be over.
Facing Life and Death
Ten days after my seizure, I was admitted to The Ohio State University (OSU) Wexner Medical Center for additional tests. A few days later, I was diagnosed with primary central nervous system posttransplant lymphoproliferative disease, a rare type of brain lymphoma that sometimes develops in people after an organ transplant and is often associated with the Epstein-Barr virus. The cruel irony was that the life-saving drugs I had been taking for the past 13 years to keep my body from rejecting the kidney I had received also kept my body from recognizing and eliminating the cancerous cells that were proliferating in my brain.
My prognosis wasn’t good. The survival outcome for this type of cancer is between 2 and 12 months with conventional treatment, including high-dose methotrexate or radiation. Fortunately for me, I was being cared for at OSU Comprehensive Cancer Center, where Michael A. Caligiuri, MD [now the Deana and Steve Campbell Physician-in-Chief Distinguished Chair and President of City of Hope National Medical Center in Duarte, California], and my oncologist, Robert Baiocchi, MD, PhD [Professor of Internal Medicine and Associate Director for Translational and Clinical Science in the Division of Hematology], had been developing a treatment protocol for this brain lymphoma that paired antiviral agents with cancer therapeutics.
I enrolled in a clinical trial investigating the antiviral drugs zidovudine and ganciclovir plus rituximab and dexamethasone.1 Three weeks after starting the combination therapy, my walnut-sized brain tumor was gone, and 6 months later, I had no evidence of disease. I’ve been in complete remission ever since.
But my history of life-threatening illnesses doesn’t end there.
A year after my brain cancer diagnosis, the kidney I had received nearly 15 years earlier failed, and I was back on daily dialysis, which I did in my living room, usually surrounded by my wife and children. I underwent the treatment for 15 months, until August 2011, when my cousin, Heidi, offered to donate a kidney. It is a humbling experience to hear someone say, “I am a match and I want to give you one of my kidneys.” How do you respond to that kind of unselfish generosity? I’ve learned throughout my life that when you feel grateful about someone’s kind act, it’s enough to show gratitude by simply saying “Thank you,” and letting the person know what he or she has meant to you.
Building a Legacy to Leave Behind
Except for the everyday bouts of common cold and flu over the past 9 years, my health has remained uneventful. However, the years haven’t washed away the fear I felt after each near-fatal illness, and keeping that experience of being a patient alive is making me a better physician. I oversee my personal basic research program and am currently creating new interdisciplinary research programs at the Center for Pregnancy and Newborn Health at the University of Oklahoma Health Sciences Center.
Given my own health history, I understand the fragility of life and am grateful to be doing this work and making an impact on the lives of these young patients and their parents. I am not looking for recognition for that impact, but rather building a legacy I want to leave behind.
I have a quote on the wall in my office that reads: “Legacy is not what you accomplish, but what you set in motion.” I would be lying if I didn’t say there is a little clock ticking in the back of my head, reminding me that time is precious. I don’t think of it as living on borrowed time exactly, but rather as a recognition of how fortunate I am to be doing what I’m doing and to have people in my life who have stood by me and supported me when I needed them most. I want to pay back the kindness and unwavering love and support I received on to my patients, their families, and my colleagues.
Learning to Live With Uncertainty
I’m taking what I’ve learned from my cancer experience and cancer survivorship and applying those principles to the survivorship of premature infants, so we might better understand and mitigate the potential long-term health effects they may encounter. The field of oncology is inspiring to me in the way it approaches patient care as a team effort. I’m helping to develop that type of multidisciplinary care team approach in my field at my institution. The more we can support the needs of our patients going through a life-threatening illness and their family members, the less fear they will have because the uncertainty of not knowing whether you will live or die is terrifying.
Over my life, I’ve learned to embrace the fact that life is filled with uncertainty. What got me through my early diagnosis of brain cancer was having Dr. Baiocchi sit on my hospital bed and tell me that he didn’t know exactly what my outcome would be, but he thought he had a treatment protocol that could help me. So, even though he was being very honest with me, he didn’t eliminate hope. “This is an uphill fight,” he said. “But it’s not an insurmountable fight.”
Having a glimmer of hope tinged with reality is a sentiment I have carried through my adult life, both personally and professionally. Thinking about a world without you in it is very tough, but I’m comforted by the fact that every day, I’m setting in motion a lasting legacy in the lives of my family, my colleagues, my patients, and their families. Knowing that makes me less afraid of the future and whatever it may hold.
Dr. Tipple is Section Chief in Neonatal-Perinatal Medicine and the Children’s Hospital Foundation Reba McEntire Endowed Chair in Neonatology at the University of Oklahoma College of Medicine in Oklahoma City.
1. Dugan JP, et al: Complete and durable response in primary central nervous system posttransplant lymphoproliferative disorder with zidovudine, ganciclovir, rituximab, and dexamethasone. Clin Cancer Res 24:3273-3281, 2018.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.