A case in Robert’s law practice has got me thinking about what happens in humans’ brains when we see or hear something without any context. One issue has to do with what government investigators thought they were hearing on a wiretap. I hope what I’m learning from thinking about this will apply not only to my life with an N.E.D. cancer survivor (one with No Evidence of Disease) but also to other circumstances of my, and my family’s, life.

[A note on timing: I wrote this on February 25, but it was embargoed until some of the underlying story became public record in a court case. So, the timing is a bit off.]

First, for those who don’t know: Robert is a lawyer who specializes in appellate litigation. Most of his clients are prison inmates who are appealing their convictions, but every so often he agrees to represent defendants at arraignments or other pre-trial proceedings. If a case ends up going to trial, he helps the defendant find a lawyer with courtroom experience at that level.

One current client (referred to here as client C and as female) was arrested for possessing or buying just enough drugs to feed her habit. C also was charged with being part of a drug conspiracy that included a murder. That’s because, on a wiretap, she was heard talking with her dealer about her need to go to the DMV and get a driver’s license. Taking this tidbit of information on its own, the investigators conjured up a story about what kind of code language this could have been. They decided it indicated that C was part of the dealer’s drug operation because she was speaking in this “code.” Their report put this hypothesis forward, and C was charged in the murder conspiracy as well.

Apparently the investigators listening to the wiretaps didn’t know that C had, indeed, visited the Department of Motor Vehicles a few days after that phone call in an attempt to get a driver’s license. In the absence of this knowledge, they made up a story to support their hypothesis that C had participated in the dealer’s criminal enterprise.

We often see this phenomenon – making up stories to fill the vacuum when we don’t know what’s really going on – on the Melanoma Patients Information Page (MPIP), an online community sponsored by the Melanoma Research Foundation. It came up recently in a post from an N.E.D. survivor who had a very small melanoma removed over a year ago and was terrified by a painful lump under her arm; she feared it was a sign that the cancer had spread to her lymph nodes.

This melanoma survivor indicated in her post that she was writing on the MPIP “just to get my fear out.” She readily accepted the comfort offered by those who posted in response, reassuring her that cancerous lymph nodes usually are not painful. She said she knew it was probably a pimple or infected hair follicle, but added, “It's just funny and sad that now small things freak me out.”

I hope over time she’ll find living with N.E.D. less freaky, but no promises. Robert had a quarterly check with his dermatologist last week, and the derm removed two spots by doing “scrape” biopsies. There was no reason to suspect that these overgrown freckles were melanoma, and some doctors use scrape or shave biopsies for removing spots or even moles in such circumstances. But some people who post frequently on the MPIP advocate always insisting on having a punch biopsy, and when I saw Robert’s wounds I found myself questioning whether he should have had one of those instead.

My lapse into “what if it’s back?” didn’t last but a second, not even long enough to freak out about it. Perhaps that’s because I have enough knowledge from reading posts on the MPIP to put these spot shaves into perspective. I know that most melanoma patients don’t ever turn up with another primary, and the most likely recurrence would be in the form of a satellite lesion closer to where the first one was excised. But as recently as a year ago, I’m pretty sure I was still freaking out over small things.

I’ll try to put this into practice in other aspects of my life. When it comes to writing and producing publications, I’ve known for years that it’s really hard to do when I don’t have enough knowledge. I can’t help but wonder how much grief and unpleasantness I might have avoided in my life if we all waited until we understood what was going on before getting upset. Life’s too short to spend it angry or hurt or scared because we don’t put something into context.

P.S. to friends and family who have been around us in the last week: too bad I didn’t think all this through earlier. Sorry for the tension you’ve observed or been part of. 

P.P.S. on March 12: If you are among those referenced in the first P.S., I hope you've noticed a change. I think my writing this, and Robert's reading it, helped!