By Steven Bognar
How Much Is Too Much Information?
By Steven Bognar
During Julia Reichert’s treatment for non-Hodgkin lymphoma, her partner, Steven Bognar, kept a journal about the challenges they faced, including how to decide on a treatment plan.
Feb. 2, 2006
The last few days have been among the most intense we’ve ever lived. Julia’s cancer is rare. We’ve sought out opinions and input from the country’s top oncologists. They didn’t always agree. They talked to us at almost their level, as we raced to learn what certain words meant, what certain drugs did, what studies have been or have not been done. These are folks who’ve spent 20 years learning this stuff. We’ve had a week. And while these are scientists, as one doc said, “There’s still a lot of art in all this.”
Julia has fought amazingly through the cloud of morphine that keeps her pain down to read over study after study, cramming for the biggest test she’ll ever take. The papers just keep coming from our doctor, Pierluigi Porcu, who knows we want to know everything. And Julia keeps asking for more. Dr. Porcu, who everyone calls P.G. (sounds like Weegee), was sitting with us two nights ago when Lela said, “So we’re getting all these outside opinions and reading this stuff, but how much is too much information?” P.G. said something close to, “I have to tell you, I’m watching you guys to make sure that at some point the volume of information you are taking in doesn’t become overwhelming. I haven’t sensed it yet, but I’m worried about it.” It’s true—we’ve been walking that line. I feel like I’ve never had to be sharper or smarter or more focused in my life than in the last week. I’ve lived in fear for forgetting something—a reference, a point of contact, a detail. I’ve never had to be a better note taker, and I’m glad that these many years of taking fast, thorough and accurate notes as a filmmaker and editor are working for us now. …
… You’re not supposed to use cell phones in the hospital rooms, and for the first few days we didn’t. Too much. Then we tried to hide it. For a day. Now the nurses walk in to see us on conference calls with notebooks and clinical studies strewn across Julia’s bed, a box of pens and a stapler nearby. They understand.