- Found in the Translation
"They told us she was cured, and then all of a sudden they told us there was nothing more they could do," Dad repeatedly told me in the first months after we lost my mother to stomach cancer. That, of course, was not quite true: in fact, there had been no evidence of tumor recurrence, until there was.
I am a cardiothoracic surgeon, the oldest of three "kids" in the family. My youngest brother is a Catholic priest. Both of us deal with life and death every day, and for years we had been trying to get our parents to formalize advanced directives. Finally, once my mother was in hospice, we got them done, with Mom and Dad both, who at that time were in their early 80s. They had been married for 57 years and Mom was dying of recurrent gastric adenocarcinoma.
Throughout the course of Mom's illness, I had the advantage of understanding, of reading between the lines, of putting together the pieces of the puzzle. I was at a medical conference in Seattle when we first realized she was sick. The night before [End Page 6] I was scheduled to give a presentation, I received an email from her, asking simply whether half a piece of toast was enough to eat before taking a medication that had to be taken "with food." My mother always followed her doctors' instructions. Wondering why she could not eat more, I called. My father answered. I heard the television news in the background, turned up loud, and asked him what they were having for dinner. "Pizza," he answered. When asked if Mom was also eating pizza, he responded that she was, so I asked to speak to her. She described severe abdominal pain and said she could not eat—but she did not want to go to the hospital. So we agreed, by phone, that she would go to the hospital if she could not drink liquids. She was admitted the next day, and I was told that she had lost 20 pounds in 6 months. They weren't sure what the problem was, but I knew right away that unexplained weight loss in an 80 year old could not be good. As her workup progressed over the next few days, every piece of information I could glean from her various physicians was evaluated, and I found myself being at once an advocate for Mom, an educator for the family, and almost another consultant on her case. The hospitalist asked me if I thought she needed endoscopy. (I said yes, and explained why.) The doctors were all great about speaking directly to my parents, and then, with Mom's permission, explaining details to me. I helped make the decision to pursue surgery, and then asked a former mentor to recommend a surgical oncologist. To a certain extent, I felt like a translator, helping my mom understand what the doctors told her, and helping them understand what she wanted.
After surgery and chemoradiation, Mom got stronger for a month or two and felt better. We were all optimistic. Her first follow up PET scan, one month after completion of her treatment, "lit up" only at the site of surgery; the oncologist assured us that it was probably related to the operation. He wasn't concerned. Although he was, as always, very frank with my parents, they went home thinking she was "cured," almost oblivious to the rationale for planning to do another study three months later. Not too long after that, though, Mom started to develop early satiety, lost her appetite and began to lose weight again. I was worried that she had developed some obstruction, most likely (I thought, or maybe hoped) related to scarring at the site of the surgery, and suggested that she ask the oncologist to refer her for endoscopy. She went to see him, but after the appointment told me that he had said endoscopy was "not necessary." Upon further discussion, though, she admitted to me that she had not really described her symptoms to him. My mom, so docile to physicians' instructions, also never liked to complain. Following...