On June 2, I received the news that I had lung cancer. There is life pre-diagnosis, and life post-diagnosis. I suspect the two will never be exactly the same. I learned a tremendous amount as a patient. Now, as I transition back to surgeon, I have the good fortune of bringing a new perspective to my practice. As a surgical oncologist who sees the impacts of cancer every day, I have now also experienced cancer and the health care system from the inside looking out.
Transitioning from surgeon to patient has been incredibly difficult for me. As surgeons, we talk about “informed consent,” making sure our patients are aware of all the risks and benefits before they make a decision. When I meet patients with pancreatic cancer, I go through my spiel on the complications of a whipple procedure – bleeding, infection, pain, risks of anesthesia, pancreatic fistula, bile leak abscess, slow stomach emptying, diabetes, exocrine insufficiency.
I have seen my own patients have complications that have truly impacted their quality of life in the short and long term. When this happens, my patients almost universally tell me that I never shared with them how difficult recovery could be. I thought I had explained all the possible outcomes; prior to June, I couldn’t fully discern what I had missed.
Now, after my own procedure, I recognize that until you experience surgery and complications, you can’t understand. Going into the operating room for my own lung resection, I knew more than most people about surgery and recovery, but the physical and mental impact of that experience still hit hard. I remembered many times reassuring my patients that they would get back to normal. Yet, as I was trying to get back to my own life as I knew it, I thought, “I will never be normal again.”
Learning to be a patient was eye-opening
The whole process of navigating the health care system is frustrating. Waiting for appointments, waiting for the results of scans, getting stuck a thousand times. I understand why we have protocols in medicine, but what exasperated me the most were protocols that didn’t make sense. I was required to change before my seemingly 100th chest x-ray, even though I took great care to wear a sports bra with no wire or metal. On the day they took out my chest tube, within an hour I had subcutaneous air and was getting short of breath. The x-ray showed a pneumothorax. I needed another chest tube. Soon. When the nurse told me they needed a COVID test first, I nearly lost my mind. I had one three days prior, and I hadn’t left the hospital. Were they not going to put the tube in if the test was positive?
I wasn’t my best self in the hospital. I did well the first few days, but when it was clear I wasn’t going home as early as I had planned (because I plan everything), I was so disappointed. I immediately felt my mood, attitude, and demeanor change. I am certain the nurses, who took great care of me, came in for their shift hoping they would be assigned to anyone else.
My surgeon, Jonathon D’Cunha, MD, understood my personality and knew that direct, honest communication about the situation was most useful for me. Maybe that is because he is a lot like me. He understood my struggle with the diagnosis and my struggle with the recovery, which did not go as smoothly as I might have hoped. He is always available. He listens. He still checks in on me all the time. He reassures and encourages me, even though I often dwell on where I was six months ago compared to today.
One of the things I hate about my job is that I am pulled in so many directions. My struggles throughout this process emphasized the importance of being mindful of the full breadth of patients’ needs. I find myself thinking: Do I give my patients enough? Am I there when they need me the most? Are they feeling the way I felt or still feel sometimes? Do I even know the right questions to ask to help them articulate what they are feeling?
Grateful for the support of everyone around me
In the context of this experience, I have considered exactly what empathy means and how it might be expressed. I think about Winston, my 3-year-old golden doodle and my soul dog (you get one in every life). Winston models empathy in a way that humans can’t. When I am sad, he knows. He comes by and lays his head in my lap and just sits and absorbs my sadness with me. He doesn’t ask for anything. He doesn’t minimize it. He doesn’t tell me it will be okay. He doesn’t tell about a time he had it worse. He just sits with me and provides that comfort of knowing I am not alone.
He also helps me understand that you don’t have to experience what someone else has experienced to have empathy. You only need to be able to connect to the emotions. Perhaps my patients don’t always need me to tell them it will get better. Maybe they just need me by their side so they know they are not alone.
I am grateful for the support I have around me. My husband Charlie (we just celebrated our 17th wedding anniversary) has always been the stable one in our relationship. I can do all the things I do because he takes care of me. I know this hit him hard. I am the healthiest person he knows; it was scary to see this could happen to me. He always put me first. He stayed with me in the hospital when he was allowed, drove me around when I got home, let me cry when I needed to, absorbed my anger, worried about me, and took care of me.
My team at work stepped in and handled everything so I could recover, checking on me all the time. Charlotte Smith, our department administrator, came to my house a 5 a.m. to watch the dogs so Charlie could be with me when I needed to be readmitted to the hospital. My Hepato-Pancreato-Biliary surgery partner, Dr. Mohammad Khreiss, cared for my patients like I would, and when I returned he was by my side in the operating room until he was sure I was OK alone.
As I settle into practicing surgery again, my perspective is changed. It is still raw. Recently, I had a young patient – a year older than me – dying of cancer. Helping patients make the transition to hospice and end-of-life care is always difficult for me as a surgeon. This time, it was different.
As I was helping her make that transition, it was juxtaposed with the idea that I could, in the worst case scenario, be in her shoes. I could barely get through the encounter with the flood of emotions. Overwhelming sadness for her and her family. Anger at the unfairness of the situation. Fear that this could be me. Gratefulness that it was not me right now.
Finally, I am incredibly grateful to my surgeon. I often thank him for listening to me and saving my life. He just replies, “That’s my job.” As surgeons, we internalize all the negative feedback, the mistakes, the less than ideal outcomes, the criticism, but never the appreciation and compliments. From now on, when a patient shares their gratitude with me, I will give myself a moment to truly accept their thanks and feel good knowing that I impacted their life in a positive way during a time they needed it most.
A version of this story was originally published by the Department of Surgery.
On Aug. 22, following a summer of recovery and training, Dr. Riall and people from the Department of Surgery will be running the first race of the Gabe Zimmerman Triple Crown.
Taylor S. Riall, MD, PhD, FACS, is internationally known for her work on comparative effectiveness (research comparing different treatments to understand the right treatment for the right patient in the right setting), patient-centered cancer, and general surgery outcomes. Along with her role as professor, Dr. Riall is chief of the Division of General Surgery/Surgical Oncology, the largest division within the Department of Surgery at the University of Arizona College of Medicine – Tucson, and associate member of the UArizona Cancer Center.