In the absence of knowledge

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!

Comments

Invaluable Post

Hi Hazel,

My name is Jackie and my husband had a large cyst on his back that began growing in November (it had been a funny .  Fast forward to mid-February and my husband tells me he has Melanoma while we were watching a movie on Saturday night and handed me the biopsy report that he had not looked at.  My eyes went immediately to T41a and saw Stage 4 (at this time I was unaware of any other staging and this was only information I had).  I'm currently a librarian who does data analysis and was a medical librarian by training that has worked with biostatisticians and researchers for the past 10 years.  The original biopsy also showed the words Primary Dermal Melanoma which as you know was the only thing I could cling to and his tumor has no intraepidermal component.   as you know this gives you completely different prognosis than Nodular Melanoma but the oncologist at MD disagrees with this but purely on a clinical basis..  Luckily we just moved to Houston from Ann Arbor last year so we are right by MD Anderson.  I can't tell you how much information I've consumed about melanoma in the past 5 weeks, it's definitely obsessive at this point (between pathology reports and imaging reports, histology, etc).  My husband had WLE (2cm margins were clear) and SLNB and all imaging that came back negative.  The oncologist won't stage him (much like your husband) but treats it as Stage IIIc or IV. 

I've read everything I can on detection of in-transit and satellite metastases and still don't have a handle on it.  It's just probabilities at this point and we have to make decisions on probabilities which is horrid (my statistical background is coming back to bite me!)

Needless to say the not knowing is so hard.  I crave any numerical value, or words in all the reports that will point in the positive direction.  I feel for all those people that get bombarded with information right off the bat.  I'm overwhelmed and am coming from a supposedly higher baseline for medical terminology.

I just wanted to say thank you for the blog you do.  It's been a great comfort in this first month post melanoma discovery.  And trying to not obsess daily, hourly, etc.  We have a wonderful 5 year old daughter, trying to keep it together!

 

Jackie,

Jackie,

Thanks for commenting, and for the positive feedback on this blog. I write mostly about issues I am dealing with because writing is a sort of therapy for me. I work a lot of my problems out that way.

That said – I’m at a point now where I can try to help others work through their own current angst. I’ll think through a post for the people who are relatively new melanoma caregivers. It will go a bit further than the one I wrote in January to a patient whose father and brother, both physicians, were bombarding her with statistics that confused and upset her. If you frequent MPIP you may have come across this advice before – statistics aren’t a very good measure for how melanoma patients and their loved ones should proceed.

If you have questions or need a boost in the meantime, send me an email through the Contact page on my blog and I’ll get back to you pretty quickly.

Best –

Hazel

P.S. Sorry for the terrible formatting on this blog. One of these days I'll take time to fix it!!

 

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