My tumor removal surgery still wouldn’t be my last surgery. The summer before 10th grade I had my fifth surgery to remove a section of obstructed small bowel. After the previous four surgeries, I was left with a large amount of scar tissue. People with FAP grow things excessively – polyps, tumors, and even scar tissue. Everyone makes scar tissue from surgeries, but people with FAP make much more scar tissue then the average person. My bowels would periodically get twisted up in the various webs of scarring in my bowels, which doesn’t allow your poo to move through the small intestines, which in turn causes severe pain, not to mention if you can’t poop, eventually you’ll die. In 1990, I had such a bad episode of obstruction that I was back and forth a few times to the ER in severe pain, vomiting, and my bowels were distended from not moving forward. Things would seem to free up a bit, and then I’d go back home, only to get worse again. After a few times in the ER for several hours, my parents had to take me back. I began to vomit shit, yes actual shit, to be quite frank. Since it couldn’t go forward through its normal route, it decided to go backwards. Dr. Martinez came to the hospital and said he needed to open me up and remove the obstructed section of bowel. Again, I did fine. At this point, it was no big deal. What was one more surgery?
As I got
older, I started to think (unrealistically) that I wouldn’t live to see at
least 30. I just felt so beat down by
the FAP that I thought I’d eventually get small bowel cancer, or one of the
various other cancers the disease can cause and that would be it for me. It wasn’t realistic for me to think that way
because I knew what I had, I knew the risks, and I saw several specialists to
have routine testing done to screen for the cancers I am at risk for. But in my mind, I felt defeated, like I would
never grow old, surely I would never be a grandmother or get wrinkled and
grey. I was sure I wouldn’t live that
long.
But I kept
living and doing well, in spite of my negative attitude. I had some ovary surgeries to remove benign
growths on my ovaries (and ended up losing both of them eventually), which had
nothing to do with my disease, it was just bad luck. When I was little, I never thought I’d have
children, but I did. I got married, I
had kids, and I was doing everything “normal” people do. As my 30th birthday approached, I
realized I never thought I’d make it to that number when I was younger. But here I was, nearly 30 and doing
well. At that point, I decided I’d
probably live to 40 and beyond. And now,
I’m pretty sure I’ll live to be really grey (I’m already getting there), wrinkled,
and aged. Like a good friend of mine
says, who has also survived a bad childhood illness, “I’m a weed.” And weeds survive all kinds of horrible
conditions.
The last
surgery I had was my ninth one, and I’m really putting positive energy out in
the universe that this is the final one.
It was over four years ago and after a yearly, routine endoscopy (a
scope with a camera on the end that looks into your stomach and the first part
of your small intestine – the duodenum), my gastroenterologist found a polyp in
my small intestine that looked strange.
The biopsy came back as severe dysplasia, the stage before cancer. After deciding what to do about it – whether
to biopsy it again in six months to keep an eye on it or just have it
surgically removed – I decided it was going to have to go eventually, so I
decided to have it surgically removed sooner than later. I’m not one to stick my head in the
sand.
I waited to
have the surgery until the summer when my kids were finished with school so
that it wouldn’t be as hard on them or my husband. I thought it would just be a five day
hospital stay. No big deal, I’d done it
many times before. The surgery went fine
and so did my hospital recovery. But
after I went home, I spiraled down and ended up back in the hospital a week
later with incredible pain and a really bloated stomach. The cancer causing polyp that I had was near
my pancreatic bile duct, called the ampulla.
When they removed the polyp, they had to remove the area where the bile
duct dumps into the duodenum, in case any cells are left behind to cause cancer
later. Sometimes moving this bile duct
and handling it during surgery really pisses off the pancreas. Sometimes it happens and sometimes it doesn’t. It’s a crap shoot. My pancreas got really pissed and I was sick
with post-operative pancreatitis.
I was
readmitted to the hospital and not allowed to eat at all. Pancreatitis requires no food by mouth, as
eating just makes the pancreas more inflamed and angry. I would be there for a week. I would spend both my son and daughter’s
birthdays in the hospital. In fact, I
had to be given special permission to leave the hospital for three hours so I
could attend my son’s birthday party.
Luckily we had my daughter Bluma’s birthday the day before I was
readmitted to the hospital. My family
brought Bluma’s presents to the hospital on her actual birthday so that I could
see her open them up. After seven days,
my blood work showed my pancreas was happier, so I was allowed to eat solid
food again and go home. But it was short
lived and I ended up back in the hospital a week later, still with
pancreatitis. Same routine. No food, only clear drinks and broth. I was bred for this. This is what my childhood was about –
surgery, hospital, pain, no eating.
Please, this is nothing.
There I was,
in bed just like I was 25 years before.
I was lonely, starving, and guess what?
I celebrated my birthday in the hospital. But I didn’t care about it like I did when I
was nine. I was an adult now and you
start to not want to have a birthday and watch another year go by. It was déjà vu in its most literal
sense. But the only feeling that was the
same was the feeling of abandonment and loneliness. My parents had been in town for my kids’
birthdays, but they had left while I was in the hospital the 2nd
time. When I had the surgery, some of my
friends and neighbors came by, but everyone was sick of me being sick and
nobody came anymore. Marcus saw that I
was in despair, so he emailed some of my friends to see if they could come
by. A couple did, which meant the world
to me. I was going to get through it no
matter how deserted I felt, because I’m strong and because I’m a mom now. My kids needed me to be home to take care of
them.
I left the
hospital just after my birthday, but returned that summer three more
times. I lost over 20 pounds, once
again, just like 25 years before.
History has a way of repeating itself, maybe so we’ll learn something
from it. I’m not clueless. I saw the irony and the meaning in it
all. I realized I had grown a great deal
emotionally over those twenty five years.
I did live to be thirty years old and what I learned from it was that
nothing can keep me down. If I can
survive that crap at nine and all the shitty stuff after it, if I can do this
again at thirty four, I can do it a million times and I can do anything. Quite simply, I can survive anything. There is nothing you can say and do to me
that will break me down. I am one
hundred percent sure I can survive anything thrown my way. Maybe I’m full of myself or I think I’m
stronger then I actually am, but I’m pretty certain I am invincible.
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