A Perplexing Question

DOI: 10.1200/JCO.2014.55.9559 Mrs A was a 38-year-old Kuwaiti woman who traveled to our cancer center to undergo treatment for locally advanced spindle cell sarcoma. As I entered Mrs A’s hospital room, I asked whether I could sit down, waited for her permission, and then looked around for a chair. There were two chairs, one of which was a large recliner in the far corner occupied by her husband. The remaining chair was hopelessly inaccessible, tucked away in the narrow space between the bed and a row of cabinets. A monitor was suspended from the ceiling, blocking access to the chair. I rolled Mrs A’s IV pole out to the foot of her bed to clear a path to the vacant chair and sat down beside her. Mrs A started the conversation. “Doctor, may I ask you a question?” “Yes, of course,” I replied. “Why do you always sit when you visit me?” I was perplexed by her question. No one had ever asked me why I sit at the bedside. I had no idea why she had asked or how to respond. As I sat in silence considering various responses, Mrs A swiped at her mobile phone’s touch screen, as if searching for a number. At first I thought she was ignoring me, but I soon realized she wanted to show me something on her device. She finally found what she was looking for, handed me the phone, and said, “We have never had so much rain at home! Everything there is flooded.” I touched the screen to start the video. Three of her six young children came to life, squealing and splashing around in the flooded street of their neighborhood in Kuwait, nearly up to their knees in cloudy, gray water. She pointed out each child, noting ages and names. Mrs A had been referred to our cancer center for evaluation and treatment of a large pelvic spindle-cell sarcoma. She received multiple cycles of chemotherapy and radiation followed by pelvic exenteration, which involved removal of bladder, uterus, vagina, rectum, distal ureters, and transverse colon with loop colostomy and formation of an ileal conduit. We, the supportive/palliative care team, were consulted to address anxiety, depression, and pain, which were to be expected in such a young woman who experienced profound changes in her body image, reproductive function, and sexuality. The consulting service was beginning to plan for discharge, and they were particularly concerned about Mrs A’s continued dependence on intravenous opioids several weeks after her surgical wounds had healed. After many visits and considerable time and emotional support, our psychosocial team and I gradually transitioned her to an oral opioid regimen and tapered the dose as much as possible. She became less sedated, resumed physical therapy, and regularly walked around the unit with her husband. However, just as we were making final plans for discharge, she developed tachycardia, dyspnea, and fatigue. Computed tomography showed bilateral pleural effusions and extensive metastases that had not been present just a few months before. After receiving this devastating news, Mrs A’s condition deteriorated rapidly. She was now bedbound most of the day. After viewing the video of her children splashing around in the water of their street, I acknowledged how much she must miss her children after being so far from home for so long, and I handed the cell phone back to her. She swiped at it again, revealing a still photo of what appeared to be a river but what I learned from her was actually a wadi, a dry creek bed that only flows after heavy rains. It was swollen, drifting along slowly, waiting its turn to empty downstream, just like the flooded street. I noticed a few round whitish gray tent-like structures in the background. “What are these?” I asked, pointing at the structures. “Those are for . . . um, . . . I forget the English word.” “Camping,” I said. “Yes, camping.” I asked her what camping was like in her home country, and her eyes lit up. “It is wonderful. All the families go to the desert for several weeks to spend time together. The children play games, and adults sit in the shade and talk. We go during the cooler months and enjoy the evening breezes. We see all the stars at night.” Although she was obviously fatigued and breathless during our conversation, she became more animated as she explained how some families take appliances such as televisions and radios with JOURNAL OF CLINICAL ONCOLOGY A R T O F O N C O L O G Y VOLUME 32 NUMBER 23 AUGUST 1