Monday, October 01, 2018

LYNCH SYNDROME: THE CANCER METAPHOR

In the past I'd say, "It's hell gettin' old!" meaning mostly physical limitations like not being able to hike or lift things.  Now those limitations are being followed by signs of death, at least in the way the pharma people frame death since every symptom and the fear it stirs up is a sales opportunity.  I'm hoping that death will come out of nowhere and be instant.

Over the weekend I had a phone call from my ex-step-granddaughter, a bright and quite beautiful woman I think of as a teenager.  She is 65.  Her daughter, whom I think of as an elementary school girl, has just gotten married, so I expect soon I'll be an ex-step-great-grandmother.  And yet the ex-step-daughter that is the key to this cascade of relationships is only a year older than me.  Even so do the surprises between heredity and culture (or subculture) weave in and out of each other.

The wild card in a wide complex that comes of divorce and remarriage, tragedy and hope, is a particular "cancer" or tumour growth, that is hereditary because it is a DNA code glitch: a missing piece of the genome that codes for a particular protein that normally repairs mismatches in the paired chromosomes.  One of the preventions of discovery of this problem has been failure to understand that the reason we don't ALL die of cancer is that there are built in constant repairs going on -- normally.  That is, we all have cancers, but most of us have bodies that kill them.

Techies know that much of their work is not writing new code architecture, but rather repairing drifted or mutated code deterioration to keep the old program working effectively.  This is why re-installing works.  When unused code, which is likely to be uncorrupted, replaces what has through use become slightly frazzled (which can happen quickly) then the program works again.

This is also true of culture, esp. when something entirely new -- like a really effective contraceptive or a change in the nature of family -- this causes code gaps, overlaps, and mutations.  But we don't have as many repair strategies as we need.  The Supreme Court was a cultural code repair system, but it has itself lost the code for truth and honesty.  How do we repair the cancer of corruption that has penetrated even our highest court?

Here's a formal definition of this cancer:  "Hereditary nonpolyposis colorectal cancer (HNPCC) or Lynch syndrome is an autosomal dominant genetic condition that has a high risk of colon cancer as well as other cancers including endometrial cancer (second most common), ovary, stomach, small intestine, hepatobiliary tract, upper urinary tract, brain, and skin."

It's like trying to look up tabooed words in an old-fashioned dictionary.  One definition leads to another.  You need to know the bits added together to make a word:  poly means many, non means not, auto means self, soma means body, endometrial means all arising from the epithelium which are the cells that provide linings and coverings. like skin.

"Familial adenomatous polyposis (FAP) is an autosomal dominant inherited condition in which numerous adenomatous polyps form mainly in the epithelium of the large intestine. While these polyps start out benign, malignant transformation into colon cancer occurs when they are left untreated."

Adenomatous means looks like a tumor.  Polyps are the little blobs that the doc looks for with tiny cameras on the end of fibers.  There is often a little scissors with the camera, so the polyp can be cut out.

Margaret, the first victim we knew about, was afflicted before we knew about Lynch Syndrome.  It is so various and so secretly arising from inside what was inherited in the egg of code, that only high tech tests can recognize what is going on.  There are two approaches to saving lives.  Both are dependent on constant surveillance and testing.  One person's life -- a particularly cherished member of the family -- has already been saved for now through colon surgery.  There is currently no medicine or gene therapy.

The second recognition is reflection on and testing of family members.  These are genetic family members, not included through bonding.  In the search for causes of Margaret's death -- which was in the Sixties -- her mother blamed everything from the crusty old doc who smoked a cigar while he operated on Margaret for appendicitis as a child and actually dropped cigar ash into her abdomen (!) to birth control pills, which prevented Margaret's daughter from the necessity of repeat abortions because she was more afraid of cancer.  (It was not that she was promiscuous so much as she was alcoholic and therefore was inseminated while unconscious.  Several culprits boasted.)  If she did have Lynch Syndrome -- she died in an auto accident before anyone knew about the cancer -- then half of the abortions (according to the laws of chance) would have been doomed to early death by autosomal dominant genetic defect.

Now we realize that Margaret's mother and grandmother both died of this spontaneously arising internal cancer.  The granddaughter's task has been to sort through the dozens and dozens of the genetically vulnerable, going back as far as there are living people, and also to ask about the cause of those who had died.  Fifty-fifty.  People had moved, couldn't be contacted, resisted contact.  Colon cancer is the primary type because the intestines are lined with rapidly replicating cells, replaced often because the colon carries along many damaging substances.  Diet becomes important because then less replacement of lining cells is necessary.

The metaphor works at the cultural level as well.  Greed, lying, using force to overpower the weak are all broken cultural prompts that destroy the ability to maintain effectiveness.  The courts -- well, I sort of hate to call them a colon, but a younger person would say they can get really shitty.  One could even say that our over-incarceration rates are a constipation, a failure to process and evict.  Fractal, you see.  Small in the body, large across the country.

People who know they are carrying Lynch Syndrome and families who include these people have a special task which is keeping their emotional stability and support alive and working. The family emotional code, you might say.  Daily life anywhere is full of small insults and lapses that can activate old failures to repair.  Maybe some have had surgery, let's say intervention for addiction.  


The ex-step-grandchildren I know best, or at least knew in childhood, have already lived longer than used to be expected.  Some didn't inherit.  Lynch's can reduce longevity by half, so people die as they barely become old enough to vote.  We see in the other countries (mostly) civil disorder and revolution can kill young people when voting isn't even a possibility.  But at least in this instance we can spare ourselves the guilt, the blame and the suspicion of not-knowing: not knowing the cause, and not knowing what to do, added unfairly to working through grief.

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