Part II: The Vortex
My career in healthcare, young as it may be, has spanned one of the most active periods of healthcare reform. The Affordable Care Act — whether you view it as an success or not — at the least represents a national attempt to improve the quality of healthcare in this country. On a more micro scale, hospitals have continually shifted both the paradigm of care and their actual architectural layouts to improve the quality of patient care.
Yet, while healthcare quality has been and will continue to be improved, certain aspects of the process are inherently difficult. Getting stuck with needles, soreness after surgery — these things are invasive and painful by necessity. Yet perhaps the most stressful aspect of healthcare that has no potential for complete resolution is the uncertainty of waiting for a diagnosis. Being caught in the diagnostic vortex is similar to being caught in a tornado — it’s difficulty to perceive the extent to which you are moving forward when you are constantly spinning in circles.
My diagnostic process formally began at the end of June with a visit to an Otolaryngologist (aka an ENT). Several months prior (either January or February, I honestly can’t remember) I had noticed an enlarged lymph node in my right neck, just below my jaw line. Then, in early May I noticed another enlarged node on the side of my neck (still on the right).
While the nodes caught my attention, I was completely asymptomatic — I was running about 10–15 miles a week, playing tennis for 2 hours every Thursday night, and working at full capacity — so I had a low suspicion for anything insidious. In mid-April I had spent a week in Bryce and Zion National Park with my brother, hiking over ten miles per day for five straight days — I felt healthy.
However, by June the nodes were still present and while not perceptively enlarging, had not decreased in size. During our family beach vacation to Sunset Beach, North Carolina, I asked my father — also a physician — for his opinion. After feeling the enlarged nodes, he encouraged me to have things checked out, though agreed that, in the absence of symptoms, it was probably nothing. The next day I texted a friend from medical school who was an ENT resident at IU Health. In short order I was able to arrange an appointment.
The appointment set off a chain of events that would eventually lead to my diagnosis. The ENT felt the enlarged nodes and checked for any oral or nasal lesions. After finding nothing suspicious, he concluded that it was worthy of further investigation, but quite possibly just benign enlarged nodes. Later that afternoon I had a CT Scan of my neck which revealed three slightly enlarged nodes.
Since I had the day off, I headed over to the neuroradiology reading room and talked through the scan with one of the staff radiologists. He also echoed the ENT’s sentiments that while quite possibly benign, it was advisable to get a needle biopsy to rule out anything malignant.
The following Wednesday I had a needle biopsy of one of the nodes. After spending the morning working in Interventional Radiology, I ambled over to patient registration and then to an ultrasound procedure room. Just hours after using needles and scalpels to place tunneled infusion catheters the (procedure) tables were turned. I lay sideways watching the ultrasound monitor as one of the senior residents took seven fine needle biopsies and then four larger core needle biopsies of one of the nodes (he was incredibly precise — none of the needle passes went astray from their target).
While the procedure was relatively painless, I was noticeably sore that evening. Yet the worst part of the process would kick into gear over the next several days. For over a week I waited to hear the results of the biopsy. As the days went on my sleep got worse and the stress of uncertainty began to weigh on my psyche. It was never debilitating — I was able to function fine at work and was able to exercise like normal — yet each day without a result the psychological weight increased just slightly.
Understand I don’t blame pathology for the delay — the process of pathological examination involves reading slides, sending cells for staining, then potentially sending for more stains based on the results. When I finally received the result, it was less than fulfilling — atypical cells, possibly Hodgkin Lymphoma, possibly benign reactive. Ultimately, given the indeterminate nature of the result, I would need an entire node removed for a definitive diagnosis.
Removing an entire node meant I would need formal surgery — relatively minor, but still requiring general anesthesia and an incision. Worse though it meant another round of waiting for pathology results — I was sucked back into the diagnostic vortex. With the surgery performed on a Monday I had hoped that perhaps I would have results by Friday, before I switched to a night float rotation, which would offer its own inherent stresses.
Friday came and went, as did Monday, and then Tuesday. I could barely sleep Monday afternoon, waiting for my phone to ring with the results. By the time I went in for my shift Tuesday night I had developed a frustrated apathy towards the diagnostic process. Waiting had become too stressful, I’d find out when I found out.
I awoke Wednesday afternoon to the sound of my phone’s ringtone and “No Caller ID” displayed on the screen, confirming it was my ENT calling with the results. A matter of seconds later I finally had my diagnosis — Hodgkin Lymphoma. While I was strangely relieved to be done waiting on pathology, the psychological weight of the diagnostic process wouldn’t abate until two days, a PET scan, and lab results later when my staging was finally complete. I may have cancer but at least I had finally escaped the diagnostic vortex.
Perhaps the most valuable insight I gleaned from the entire process is that the uncertainty of awaiting a diagnosis is awful, but is a problem without a plausible solution. Quite honestly, by virtue of being embedded in the healthcare system I was able to expedite every aspect of the process I possibly could — likely shaving days to weeks off the overall waiting time compared to an average patient. Yet the wait still felt interminable and the stress of uncertainty nevertheless weighed significantly on my psyche.
The diagnostic vortex inevitably churns on. Perhaps the best we can do — either as physicians, friends or familty — is to toss an emotional raft to help those trapped in its clutches stay afloat until it finally spits them out.
