Doctor Patient: What Happened When I Got Cancer
It was last Summer in July when I became sick. It was a range of not unusual upper respiratory symptoms, but as time progressed and my symptoms didn’t respond to the usual combination of steroids and antibiotics, I became concerned. I’d developed a more distinct pain in my chest, and became increasingly mindful about those bad things we see from time to time.
It was late after a shift in the ER at Bristol Hospital, where I am Chairman of Emergency Medicine. I asked one of the other physicians on duty to order a CT scan for me, and continued working. When the radiologist called back with the results, I was the one who picked up the phone.
I’m used to taking down the notes and passing them along to the patient. I wasn’t used to being the patient. Actually, at that moment I was not yet thinking of myself as a patient. I was still the doctor. Looking back, I can’t help but think of the famous aphorism that the doctor who treats himself has a fool for a patient.
The radiologist was a little shocked to call into the Emergency Department and actually get me on the line. Nevertheless, he proceeded to tell me: my lung was collapsed. I had post-obstructive pneumonia, and a tumor that was obstructing my left main stem bronchus. “Are you OK,” he asked? I still remember that question, because it was the moment I began the mental and emotional transition from being a doctor to being a patient.
At some emotional level I knew I needed to maintain control. But another part of me realized at that moment that I would soon become a part of the system, as opposed to the physician who is controlling it. I would become the passenger, instead of the driver.
The next day I got a bronchoscopy, which confirmed that tumor looked liked a carcinoid. The procedure involved all sorts of drugs and tubes being put into my body. I was uncomfortable, but I didn’t ask any questions. What became relevant to me at that moment was the nurse holding my hand. I actually knew who she was professionally, but until then I’d only thought of her as another hospital employee. Now, she stroked my arm, and it felt incredibly comforting, almost maternal.
Somewhere, deep down in my soul, I was so, so scared.
Very soon I had an appointment with a thoracic surgeon at Massachusetts General Hospital. The recommendation after the appointment was for a thoracotomy, and the gravity of that news was my first real challenge. It was a huge procedure and would involve a long stay in the hospital and a prolonged recovery period. The weight and seriousness of what I faced truly began to sink in. I stopped, and briefly started to cry.
Meanwhile, I was walking around Mass General not as a doctor, but as a patient. Waiting in line to get blood drawn. Waiting in line to get a pulmonary function study. Every encounter mattered to my emotional well-being, and every period of waiting was instructive. Through it all I just wanted information: how long would I be waiting? How long would the results take to come back? Everything was heightened. I thought about how different it was to be the patient waiting for results of a test as opposed to the doctor ordering them.
My surgery was scheduled for August 15th on a Friday morning. I showed up to the hospital at 6am. Immediately I was in a waiting room with 10-15 other patients, from kids to a few very elderly individuals, all there for a variety of procedures. I am 51.
Eventually I went to get changed into the surgical gown. I’m sure I’m not the first to say this, but the process of getting undressed felt like an apt metaphor for the stripping away of my humanity. The medical system tends to do this: patients aren’t people. They don’t have families, careers, dreams, fears, or souls – in medicine, all too often they only have blood pressures and heart beats, organs and carcinoids. They they are sick organisms.
I was actually ok with the stripping away of identity, the vulnerability. It was when they wheeled me around the corner, with my wife watching me disappear – she was in tears, and I started to cry as well. The reality of it hit me. You’re going under the knife for as many as five hours, and you don’t know if you’re coming back.
As much confidence as I had in the system, in the facility, in medical science, in the physicians, and even with all my knowledge as a doctor, and all the literature I’d read about my particular tumor, in my particular location, even with all of that, there was this unmovable kernel of vulnerability. Because I understood I might not come back from this.
After being wheeled into surgery I met the surgeon, the anesthesiologist, the entire team. IVs were placed, an arterial line was placed, I received an epidural, and then I signed a consent for a central line. That’s the last thing I remember.
When I woke up I was in the ICU. My wife was there, and all I wanted to do was stand up and get out. Instead, I was in bed on Floor 19, in a room that overlooked the Charles River. It was a beautiful view. As I recovered over the next five days that view kept me sane. I had a chest tube, a catheter, an epidural, two IVs, the cardiac monitor, the supplemental oxygen, and the pain pump – but I also had the Charles.
Today I am back working shifts in the ER, back driving the system. But there are so many lessons I have taken back with me, lessons that no amount of continual medical education could have provided.
There was the noise level in the recovery room, to which I became incredibly sensitive. I realized that the idle chatter of the nurses in adjoining rooms made a big impact on my comfort level. There was the flow of information while I waited for tests, waited sometimes not knowing why I was waiting, or waited with not enough information about what was coming. There was the moving from place to place, the discontinuity from one care provider to the next as I was worked through the hospital’s process. And of course, there was the physical contact and emotional support provided by the nurse.
I am healthy today, and glad not to be a patient. But as a result of the experience, I am also, I hope, a better doctor and physician leader.
In the end, I took a few simple lessons that were helpful to me as a patient, and now help me as a caretaker. I touch every patient. The simple act of putting a hand on a patient’s forehead, or a hand held during the history is a simple and meaningful gesture. I always try to let patients and families know what they are waiting for and how long they can expect to wait. They do it at restaurants, why not in healthcare. Generally, I have begun to think of my journey as that of an expert caretaker, not just an expert provider. There is no more noble effort.