Monday, October 21, 2013

This is the Start of it


People were dropping like flies in my family.  My grandmother died when my mom was ten.  My mom’s uncle died when my mom was very small and she couldn’t remember him.  He was in his early twenties.  My mom was a toddler.  He served in World War II and when he came home, he began to feel sick.  He died one year after returning from the war, from a brief battle with colon cancer and he left behind a wife and a baby.  My grandmother suffered longer.  My mom doesn’t remember a whole lot - just that Anna, her mom, was very sick in bed and went to have surgery at the hospital.  Her colon cancer was so bad that they closed her up as soon as they opened her.  There was nothing they could do.  The cancer was everywhere.  She died a few days later in the hospital.  She wasn’t the first in the family to suffer or die from the colon cancer – the family curse.  It was there plaguing our genes for many, many years before.  That’s the funny thing about genetic diseases.  They follow you everywhere.  My mom had five siblings, including her, that inherited the FAP.  My Uncle Clyde had three children.  When his son Kevin was 4 years old, my cousin became ill and was admitted to the hospital for tests.  It was discovered that Kevin had liver cancer at the age of 4.  He died two years later after a long and horrible battle with the disease.  When Kevin died, everyone in the family suspected he may have had FAP.  It just seemed too coincidental.  At the time, a lot less was known about FAP, in fact, they only thought it caused colon cancer.  Years later, when the medical community discovered that FAP children are at high risk for a rare liver tumor called liver blastoma, we knew that Kevin indeed had FAP and it had killed him.

Upon Kevin’s death, my mother became concerned that my sister and I might have FAP and that if she didn’t find out soon, it could be dangerous for us without treatment.  Familial Polyposis is a heterozygous dominant genetic disease.  Everybody has two copies of each chromosome in their body, one they get from their mother and one from their father.  Heterozygous dominant means that a person has inherited one “good” copy from one parent and one “bad” copy from the affected parent.  Each child of someone with FAP has a 50/50 chance of inheriting the disease.  My mother hoped my sister and I had both dodged a bullet.
I was eight, and my sister was eleven.  We had to go get a colonoscopy to determine if we had polyps, thus we would then have FAP.  A colonoscopy is a wonderful invention of modern medicine where a camera is mounted on the end of a long, black, flexible tube.  A gastroenterologist, quite frankly, rams the business end of the tube through one’s anus and into their rectum and the entire length of the large intestine looking for polyps and other abnormalities.  You may be thinking this sounds horrible and unpleasant, but let me assure you that all patients undergoing these procedures are completely drugged and gorked out.  You will not remember anything of the experience and you may even enjoy the drug ride while it lasts.  I mean, you may as well get something positive out of the whole experience.  In digression, I would like to take the opportunity to tell you that if you have a family history of early colon cancer or you are over the age of 50, please, please, please, please go to a gastroenterologist and find out when you need to have a screening colonoscopy to make sure you do not have early stage colon cancer or pre-cancerous growths.  It can and will save your life if you do have something and there is nothing to fear.  The doctor is used to ramming one of these tubes up people’s asses and trust me, there is nothing he or she hasn’t seen, smelled, or touched.  So, stop being a fecal phobe and trying to pretend you don’t poop, or whatever it is you’re afraid of and go get a damn colonoscopy so that you don’t die. 

Ok, so I and my sister had to have the butt camera test.  In order to have the test, you have to clean your bowels out.  You can't have shit in your bowels because then how would the doctor see the walls of your colon and be able to tell if there were colon warts waiting to kill you?  So, you have to clean all the poop out and at the same time not make more poo.  Back then (it was 1984), they didn’t have this wonderful colon cleanser called Go-lightly.  Go-lightly is a polyethylene glycol solution that keeps your bowels from absorbing water, giving you massive diarrhea, and ergo cleaning your bowels out.  This is basically “the colon cleanse.”  But, they didn’t have that then.  Instead, to clean your colon out, you would start fasting three days before your colonoscopy.  The first and second day, you could have pudding, broth, clear soda, and non-red Jello.  The third day, you could not have the Jello or pudding anymore, just clear liquids.  The day before and also a few hours before the procedure, we got to have more than one enema.  Enemas are not so fun.  The first time is quite an experience.  You have to hold the liquid in your rectum for five or ten minutes and the whole time, it feels like your rectum might explode.  On the third day, my father grew so sick of our belly-aching about not being to eat that he pushed a cracker in our faces and yelled “Go ahead and eat then and cancel your test and start the suffering all over again because you’re going to have this test no matter what.”  It made sense what he was saying so we didn’t eat, but the bitching was inevitable.  Not eating for three days really sucks. 
So we had the test.  My sister went first.  I don’t remember hardly anything that day.  I was nice and drugged out.  I only remember afterward, my parents took us to Chuck E Cheese to reward us for having to go through the test.  I’m not sure how greasy pizza went down on such and empty stomach.  The gastroenterologist called three days later with the results of the tests.  My sister didn’t have any evidence of polyps, thus at that point, she did not have FAP (my sister years later, when the genetic test became a reality, she was genetically tested and she thankfully does not have FAP).  I however had on the order of several hundred to a few thousand polyps throughout my large intestine.  Snare biopsies of a few of the polyps revealed they were in the pre-cancerous stage of development.  I would indeed develop colon cancer probably by the age of my early twenties without surgical intervention.  My mom hung up the phone and I asked her what the doctor said.  She told me I had FAP.  I was instantly jealous of my sister.  I was already asking God why it was me.  I wasn’t really sure why it was me.  I couldn’t really understand it all yet.  By the next day, I didn’t think about it at all because I didn’t know yet what I would have to do, but my mom was thinking about it.  She was already beginning to plan what I would have to do.  Ignorance is bliss. 

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