Round 2

In spite of the social problems I had post-surgery, I somehow managed to get through fourth and fifth grade and move onto middle school.  At some point during fifth grade, I started to feel a strange sensation on the right side of my abdominal area, close to my incision from my colectomy.  The feeling was a cross between a stabbing pain and the feeling of my muscle being ripped apart.  The sensation would last a minute or two and then it would go away.  I might not feel it again for several weeks, or some days it would happen two or three times.  I had no idea what it was, but I was almost eleven by then and I really didn’t care.  In my mind, I was never going to have any more issues with FAP and those three surgeries I had before fourth grade were going to be it.

As the summer before sixth grade was approaching, it became pretty obvious there was something wrong in my abdomen.  There was a freakish, protruding, round hump on the right side of my incision.  It was rather hard to the touch and it was ugly to me.  My stomach already had an unsightly cut down the middle vertically, from my pubic bone area up to my belly button.  And then I had the horizontal cut on my right side of my belly where the ileostomy was.  The muscle and fat pushed out around where I had been cut, accentuating the incisions even more.  Now I had this ugly bump, and I figured it was normal and I could add this to my list of things I hated about me and my body.

It was summer and I spent a lot of time swimming and wearing a bathing suit.  My mom began to realize that bump on my stomach probably wasn’t something normal.  It seemed to be getting bigger and uglier every day.  You could really see it through my stretchy bathing suit.  The thing looked like the head of one of those aliens (from the movie Alien) getting ready to birth itself and rip open my skin to reveal a nasty, gooey, hissing creature ready to tear anyone’s head off.  The truth is, there was a nasty, tissue eating mass growing in my abdomen and it was probably every bit as ugly as an alien. 

My mom suspected I was growing a desmoid tumor.  Desmoids are a very rare tumor that are highly associated with FAP.  They start growing only after muscle and fascia are cut during surgery or more rarely, ripped or torn for example from a sports injury.  When muscle and fascia are cut during surgery, they normally scar and grow new tissue to fill in the space that becomes the incision scar.  After there is enough tissue to keep the skin, muscle, and fascia together, the body normally stops this growth process.  But sometimes, in people who have FAP, along the incision area, underneath the skin where all the connective tissue lives, the cells keep growing even after the surgical area has completely healed.  The cells of that connective tissue keep overgrowing and nothing tells them to stop.  When that happens, you officially have a tumor.  Desmoid tumors are benign in definition because they do not grow within organs and invade the blood stream, sending the bad cells to other parts of your body.  That is what a malignant tumor does – what cancer is.  But desmoids are anything but “benign.” 

Desmoid tumors don’t stop growing, they grow at an incredibly fast rate, and they will push organs out of the way and engulf nerves and blood supply structures.  They are very tricky to remove completely because of how invasive they are.  Quite simply, they are like a weed, like bind weed to be more exact.  The only way to get them out of your body is to surgically remove them, but a surgeon must be careful to remove every single bad cell of the tumor because much like cancer, if you leave one cell, the thing will just grow again.  Unfortunately, these tumors do not seem to respond well to radiation or chemotherapy regimens.  So if you are unlucky enough to have one of these tumors that surgeons are not able to remove completely, quite simply you are pretty much shit out of luck.  Most certainly, the tumor will keep growing back and it might get to the point where surgeons cannot control it anymore, and eventually the tumor causes death.  Most patients who develop desmoids successfully have them removed permanently, after at least one surgery.  But some are not so lucky and there have been several deaths in FAP patients from these nasty tumors.

My mom was pretty sure I had one.  She should know.  She had one, and had to have it removed when she was pregnant with me.  Her desmoid was growing in her body before she was pregnant, probably as a result of her c-section surgery three years prior when she had my sister.  It was small enough that she didn’t know it was there, until the pregnancy hormones fed the tumor like a large man at an all you can eat restaurant.  Desmoid tumors love hormones and seem to grow much better when there are a lot more of them around.  So my mom’s tumor grew so fast and so enormous from her pregnancy, that the damn thing was pushing me all over the place.  It was threatening my life, so away it went a few months before I was born.

I had to go in for a CT scan, to see if the freakish thing in my abdomen was a tumor.  I had to drink the disgusting white liquid before the scan, so it would better show the contrast between the growth and normal anatomical tissues.  I had to drink this crap every 30 min for about a total of four of five hours in preparation for the test.  Back then, you had to ingest the contrast to get it into your body, but technology has progressed and now doctors inject contrast directly into your veins so there’s no more nasty stuff to drink.  Once again, I was born too early to reap the benefits of more modern technology.  After vomiting up the last bit of contrast I had to drink just before the test, I went in for another dose of healthy radiation – the CT machine. 

And the results of the test: a mass the size of a toddler’s head in my abdomen.  I had just won another trip to the OR.  It was about two weeks before my first day of 6^th grade.  How fitting.  Wouldn’t you know it, I couldn’t even start middle school off with as normal as an experience as possible.  Clearly that wasn’t how I rolled.  It was already going to be rocky without surgery complicating things.  I knew I was going to get picked on, made fun of, and bullied.  That was my life, but now I had to deal with the hospital again and recover while trying to dodge the hell of being in middle school with old and new mean girls.  I couldn’t catch a break to save my life.  From the time I was in my mother’s womb, I was suffering and here I was, still suffering, ironically from the same damn thing that threated my life eleven years ago.  How ridiculous.