I've been debating making this thread for a while, kinda as a depository of information. A bunch of people around here know what's going on with me, but there's a bunch more that little or no idea and then go "huh?" when I mention it.
Warning: considering the subject matter, there probably WILL be information in this that can and will be "gross". Not much I can do about that, although I'm gonna try to skirt the grossness somewhat.
Like any good story, this one should be started from the beginning. The very beginning. So, let's go back 20-something years ago, to my dad as a late teen. He goes to the doctor about blood in his poop. Doc says "you're fine if it's only a little". Being a late teen, my dad thinks "oh I'm fine then" and for the next 20-something years keeps on thinking nothing is wrong. Meantime he has a family: Me, born in '92; my middle brother Hunter, born in '97; and Tyler, born in '01.
In 2004, at 12 years old, I end up in the hospital with a large massive tumor inside my ribcage, an EXTREMELY rare (insert complicated doctor-speech here). The gist of it is that it was 6 pounds, completely encapsulated (meaning instead of growing into stuff like a normal tumor is just pushed stuff out of the way), and almost killed me by crushing my lungs and heart, and grew slowly enough that of course noone realized it was there till it was almost too late. Doctors had nothing to tell them how/when it started growing and more importantly *why*. Without any information to go on we attribute it to effectively extremely bad luck.
Fast forward again to 2008. My dad decides that with him recently turning 40, it's time for a second opinion. He goes in for a colonoscopy, from hereon referred to as a "scope". Enter his new GI doctor, a Dr. Hogan, who almost from the second he starts the scope believes he is looking at the colon of a dead man. He finds thousands of polyps, small generally pre-cancerous fleshy growths, all over the inside of my dad's colon. They grab samples of as many of them as they reasonably can, expecting to find cancer cells in all of them, and expecting Dad to already be lost to cancer. Not a one of them turns up as cancerous. However, still expecting the worst they give my dad the bad news. The diagnosis? Familial adenomatous polyposis. The only possible treatment? Total removal of the colon...
Familial Adenomatous Polyposis can be described pretty simply. Remove the middle word, and translate that doctor speak into English, and you get "Family Polyps". It's a disease that affects a gene known as the "APC" gene, a gene which protects DNA from errors during DNA Replication. It mostly affects cells found in the colon, causing polyps, and it can travel from parent to child regardless of sex or any other factor. There are no carriers, you either have it or don't. Flat 50% chance of getting it from an affected parent. It has some weird genetic markers associated with it too: missing, malformed, or extra teeth, weird color spots in eyes, freckles on the insides of eyes, weird tumors, among others.
...My dad of course, knowing that the odds are against him (no one lives to 40 without getting cancer with FAP) arranges the surgery long enough down the road for him to get everything in order incase he doesn't make it, and to take a nice long family vacation. The J-Pouch surgery is most often a two-part surgery, and his was no exception. In August of '08 they did part 1, and in September or October they did the second. Of course, when they removed his colon they did more testing across the entire thing, and found no cancer. My dad is a miracle man. He goes back to work after recovering, happy to be alive.
In late 08 myself and Hunter, my middle brother, are tested for FAP via colonoscopies and both of us are found to have it. I'm a freshman in high school at the time, so we decide to wait until I graduate high school to do my surgery, and we figure we'll do Hunter's before he gets in high school. Tyler isn't tested because he's too young.
Fast forward again to 2010. We've planned Hunter's surgery for sometime at the end of summer, and mine for the next summer since I graduate in May 2011. During the first half of the year though, Dad starts getting sicker and sicker. After an upper GI-tract scope, it's decided that he needs surgery to remove an obstruction that's grown in his small intestine. He goes into the hospital and is in for 40 days and at least 4 surgeries. It turns out that his small intestine has been eaten by small, non-malignant but sticky tumors, called "desmoids"- a sad "side-effect" of the disease. Nothing can be done. 10% of his small intestine is removed, 70-80% is left, disconnected and uselessly clumped together by the tumors, and 10% is left connected to his stomach. This leaves him permanently disabled and according to the doctors without long to live.
Hunter finally had his first surgery in June 2011, the summer solstice and Tyler's birthday to be exact. June 21. I had my first surgery on August 30th, and he had his second 2 weeks later in the middle of September. My dad has beaten all odds as far as life expectancy go, but in exchange for being addicted to certain drugs that slow down his digestive tract enough to actually absorb food. However, we still don't know how long he has. Could be a year, could be 5 years, but one thing is for sure: he's living on borrowed time. We're living on his disability (a measly 1200 a month, and almost half of that disappears for drugs he literally can't live without) and mom's minimum wage job at a local dry-cleaner's. My second surgery has been put on hold (for reasons I won't get into here) and I cannot work or go back to school until I've had it, and then had about 6 months to recover.
That's about everything.
“A children's story that can only be enjoyed by children is not a good children's story in the slightest.” -C.S. Lewis