Our Version of Normal

DOI: 10.1200/JCO.2009.27.3201 “My kids don’t see what I see,” Jonathan reflected. He was remembering the time several months ago when an explosive detonated, and he carried a wounded man for a mile across the sands of Afghanistan. I struggled to imagine what that must have been like. Jonathan sat across from me on the couch in the exam room, 35 years old, muscular, and in good shape—he was still relentless in the gym when he wasn’t on duty overseas. His gaze was intense and his expression serious, softened only occasionally by irreverent interjections from his wife. “Dark humor keeps us going,” she offered, and Jonathan agreed. “Last night I slept in this bed that I made,” he recalled—he had taken up carpentry as a hobby, and had made beds for his wife and children—“just in case I died today and never got a chance to do it.” Five years ago, Jonathan was in peak condition, doing a job he loved, when he was diagnosed with Hodgkin’s disease. He was unfazed. He breezed through chemotherapy, and many of his fellow soldiers didn’t know that he had cancer. He didn’t ask for any time off because he didn’t want it. “This is my dream job, my NFL,” he said about the military. “I want to do this until I’m too old.” Jonathan later relapsed, but for him this only meant something else to plan around. He was hardly inconvenienced by his autologous transplant, jogging the halls and working out with the amputees on day 3. “I was operationally the same,” he recalled, “I didn’t want the guys to think that I was any different than before.” He was still in control, and that was what mattered most to him. His children were 2 and 5 years old, healthy, and mostly unaware that their dad might be sick. His wife, who he’d met on a Navy ship years ago, was eternally supportive of him—in his battle against his disease and his fight against the enemy overseas. Three years later, the cancer came back again. After successful salvage therapy, an allogeneic stemcell transplant was offered and Jonathan accepted. Though he had been warned that this would be a very different kind of experience, he had a hard time believing it until he experienced it for himself. He had faced the transplant as another physical challenge, training relentlessly before his hospitalization so he could meet his adversary on his own terms. And yet, he acknowledged, “it crushed me.” Before, he had weighed 230 pounds; now he had lost 30, and there was no hiding from his friends that he was sick. In the weeks after the transplant, a combination of fatigue, anorexia, and flu-like symptoms steadily increased. He wanted to work out but could not. He developed his own close cadre of support staff: his friend James, another military man who had recently been through a transplant, always ready to share advice learned from his own experience; his wife, who knew how to look for help on WebMD; and his mother-in-law, a nurse. Worse than the medical issues was the loss of control. This was worse than war. In the hospital, his Hickman catheter (Bard, Murray Hills, NJ) was his “leash,” taking away his freedom to move around. In the first few weeks home from the hospital, he found it too painful and exhausting to go upstairs to tuck his kids in at night. “That hammered me,” he remembered, “I’d never been through that in my life.” He would look around the clinic waiting room with amazement. “I saw all of these people, a lot of them 40 or 50 years old. I trained for my transplant so that I would be in the best shape ever, but it still killed me. I thought to myself, how could these other people do this?” A successful day had become one where he could get out of a chair to find the remote and turn on the television. With time though, Jonathan’s strength began to return. He tried to resume his workouts 5 months after his transplant, but his body crashed. He took a few months off. By the seventh month, he was able to sustain a consistent training program. He continued to grow stronger. Finally, 10 months after his transplant, Jonathan did the previously unthinkable: he deployed again to Afghanistan. Resuming this new kind of life and death risk-taking didn’t seem to bother him. “Stress is just drama—I’ve seen body parts,” he recalls. “It’s more honorable to go out with a bang in a big ball of fire than to lie in a bed and croak. I didn’t want my kids to watch me waste away.” More than this though, in combat, Jonathan didn’t need to wonder whether he was making a difference. He knew that he was. He was living his life for country, family, and honor, as he always had before. Now, Jonathan’s wife describes, they’re back to “our version of normal.” She goes on, “We’re not JOURNAL OF CLINICAL ONCOLOGY T H E A R T O F O N C O L O G Y VOLUME 28 NUMBER 15 MAY 2