In his early conversations with his oncologist, Mr. Boren learned that he would die in months without treatment. But with treatment, there was a chance that his cancer would respond, and he would live for months or even years. The cancer studded his lungs and had eaten away at the bones in his hips. He could barely breathe. Shortly after diagnosis, he started on immunotherapy, a two-drug cocktail that has transformed outcomes in people with even very advanced kidney cancer.
“I could feel the disease burden going away, but I still had the constant thought of death,” Mr. Boren said, referring to when his cancer started responding to treatment. Though he was ultimately able to return to teaching social work classes, he finds himself grieving the loss of control over his future. He does not know if cancer will ultimately shorten his life, and if so, by how long. When doctors tell him his disease is “stable,” he knows this is good news, though doesn’t quite feel like it. The cancer is always there.
Mr. Boren will need to take his cancer drugs for the rest of his life, most likely, or until his disease progresses, at which time his treatment will shift. He doesn’t know how to plan his life. “When your life is so future-focused, what do you do if you might not have a future?” he asks.
On a recent visit, a doctor was very clear with Mr. Boren and his husband that the cancer would never be cured. Even though Mr. Boren knew that to be true and maybe it needed to be said aloud, hearing it said so clearly felt cold, jarring. “We’re already living in the gray. How that truth gets delivered really matters,” he told me.
The experience has reminded Mr. Boren of when he worked as a social worker with H.I.V. -positive patients and early antiretroviral therapy started saving lives. In some ways, he said, it was easier to work with people who were dying than those who were living with H.I.V., but not yet sick. “With end-of-life, we knew what to do,” he said. “In the gray zone, you have to keep figuring it out.”
