“So, what do you think it is?” My closest friend, my BFF, had dropped by my home unexpectedly to ask for a curbside consult. I laid my hand over the place on her back and felt around. There was definitely something there, something that didn’t belong. Whatever it was felt hard and as if it was attached to the iliac crest. “I don’t know what it is,” I said.
I can stop right there and tell you that it took 3 weeks for us to find out. It ended up being nothing bad; it was an area of fat necrosis that likely came from the hormone injections she had as part of her in vitro treatments years earlier. Some cells had an aberrant reaction to those injections and for an unknown reason had recently decided to grow. It was benign. Of course the worry from the beginning was that she had cancer. Working in oncology, what feels strangely normal to me are the stories of a patient going in and finding out their worst fears have been realized. On the NPR radio show, Wait Wait … Don’t Tell Me, the contestant is asked a ridiculous question and provided with three answers. Each one seems unlikely, yet one is correct. I wonder if that is how my patients feel when they are waiting for their diagnosis, like an absurd question was posed to them and the choice of answers they are given is nearly incomprehensible.
My girlfriend’s scare brought home the suffering many oncology patients endure as they wait for their diagnosis. Even when tests are fast tracked it takes time. How do they handle the wait? The late historian and Pulitzer Prize winning journalist David Halberstam was quoted in an article about the pervasive anxiety of those living in New York post 9/11. A New Yorker himself, Halberstam called it the “constancy of vulnerability.”1 In a similar fashion the issue of vulnerability and the constancy of it wear away at a cancer patient’s emotional reserve. In 2000 the American Psychological Association (APA) looked at the circumstances that could produce symptoms of PTSD, one of which is “severe and disabling anxiety and phobic reactions displayed by individuals in the wake of a traumatic experience.”2 The APA recognized that a patient diagnosed with a life-threatening illness, such as cancer, met the criteria for having experienced a traumatic event.3 Even so, I am sometimes surprised when a patient exhibits distress.
My patient Susan had decided on one last round of chemo. Her cancer had progressed through two other chemo regimens. Her medical oncologist told her there was a less than 10% chance the new chemo would have any effect. But she wasn’t ready to give up. I stopped by to see her the morning before she started the chemo. “I’m ready,” she said and smiled. It was typical of her to be upbeat.
“Okay, good,” I said, “any questions?”
She reached for her water pitcher but accidently knocked it over, the water spilling down the side of the tray table. I started to help clean up, reassuring her that it was no big deal when she began to cry, thick sobs shaking through her. I was taken aback. We had thoroughly discussed her options. Her resolve always seemed solid. I had never seen her cry, not when the pain and nausea had overwhelmed her, not after sleepless nights in the hospital. Not even after the doctor told her this chemo was her last chance. She looked up at me, tears dripping like the spilled water. The skin around her eyes had faded into a translucent gray but her eye color was clear blue. “It wasn’t supposed to be like this.” She banged a hand on the tray table. “I’ve done everything they told me to do. I’ve been so strong. This wasn’t supposed to happen.”
I’d been impressed by her strength throughout her treatment so I was astonished by her meltdown. Part of me thought, wait, wait, don’t tell me. Don’t tell me you are worn out, that after all this time you are going to fall apart. Don’t tell me you want to give up. I’d invested my own sense of stoicism in her, considered her resilience to be permanent. I moved into recovery mode, “Let’s talk it through,” I said, and started to calm her down. She dabbed her eyes with a Kleenex and gave me a thumbs up. Maybe I was wrong to try to smooth things over. Maybe by thinking, wait, wait, don’t tell me, I kept her from embracing the other side of her strength. Perhaps her efforts to stay strong actually weakened her. Maybe it is time for me to adjust my expectation of what being strong means.
I watch as my patients wait for test results; wait for the start of chemo, for the finish of chemo. They wait for the doctor to see them. They wait for their nurse to bring their meds or answer the call light and while they wait there is an underlying layer of anxiety as they contemplate what is next, what the next thing to happen will be. Since the unbelievable has already happened, what might be next? The constancy of vulnerability plays out as anxiety, an internal voice saying wait, wait, don’t tell me. And it plays out in interesting ways: fear hiding behind strength, anger embedded in everyday conversations, or aloof withdrawal. I might see it as they wait for the results of the CT. Or it might happen when a water pitcher is knocked over. ONA
Ann Brady is the symptom management care coordinator at the Cancer Center, Huntington Hospital, Pasadena, California.
1. Getlin J. Five years after. Anxiety lingers in New York. Los Angeles Times. September 10, 2006. http://articles.latimes.com/2006/sep/10/nation/ na-newyork10. Accessed September 21, 2011.
2. Smith MY, Redd WH, Peyser C, Vogel D. Post-traumatic stress disorder in cancer: a review. Psycho-Oncology. 1999;8(6):521-537. doi:10.1080/01926180500290480.
3. Bush NJ. Post-traumatic stress disorder related to the cancer experience. Oncol Nurs Forum. 2009;36(4):395-400.