The desmoid was growing in size every day and I had to get a new surgeon, one who could get every last bit out of my body. His name was Dr. Martinez. He was from Paraguay and he had a funny accent that made me feel better about the whole situation, because he had a great sense of humor too. He told my mom I couldn’t wait at all. The mass had to come out immediately. I was scheduled the next week. But I was starting school in two weeks. There was no way I’d get to go to the first day of school. I’d probably miss most of the first week of school and I’d be lost trying to figure everything out at the new school. My anxiety was reaching melt-down levels.
The only
thing positive I could possibly see about having the tumor removed was that I
saw an opportunity for Dr. Martinez to fix my ugly scars. I asked him if he could fix them when he cut
my tumor out. He commented that he
agreed with me that my colectomy surgeon Dr. Lily had certainly done a pretty
poor job of giving me a clean and tidy incision. He said he’d fix it up when he removed the
tumor and he’d try to make my tummy less bumpy.
That made me feel so much better.
At least something good would come from this stupid tumor.
My surgery
had to be scheduled at St. Joseph’s hospital in Denver because they had a
radiation unit in the OR. In 1986,
doctors thought radiation could help kill the tumor if they weren’t able to
remove it entirely. They thought the
radiation would prevent any leftover tumor cells from growing back, but that
has proved over the years to be rather useless in desmoids. After the surgery at St. Jo’s, I would be
transported by ambulance a whole three blocks to recover at Children’s Hospital
in Denver.
I had the
surgery thing down and of course wasn’t worried about surgery itself. I was just hoping and praying when I woke up,
the tumor would be 100% gone and I could move on with my freakish life. When I awakened in the post-operative room at
St. Joseph’s hospital, my mom told me Dr. Martinez felt confident he had removed
the tumor entirely and that it probably wouldn’t ever grow back. A weight had been lifted off my
shoulders. I was pretty tired and
drugged out, so at the time, I wasn’t expressing any happiness, but I was
thankful to hear I wouldn’t have to go through this again. I was then wheeled downstairs to the
ambulance bay and transported to Children’s hospital. Luckily, this is the only time I have ever
been in an ambulance and it wasn’t anything exciting. I was high as a kite and exhausted and the
ambulance was just a glorified taxi I could lay down in to get to my
destination.
My recovery
at Children’s was uneventful, thankfully, and I went home after about six days. My new and improved incision looked so much
better! It was straight and a lot
thinner in width. It was going to look
so much better when it healed than my previous incision. My stomach wasn’t as bumpy now and the
freakish alien head wasn’t popping out of my abdomen anymore. That sucker was gone. But the tumor had wreaked havoc on my stomach
muscle anatomy. The mass was on the
right side of my abdominal wall. Desmoid
tumors invade muscle, fat, and connective tissue, bundling it all up in its
path as it grows in size. Removing the
tumor had left a hole in my stomach muscle wall – known anatomically as the
rectus abdominus. Muscle does not grow
back once removed, so I would have a hole in my stomach wall and nothing to
cover my bowels, so Dr. Martinez transplanted muscle from the other side of my
abdominal wall to cover the hole on the right side. This was a great solution, however, my
stomach muscles would never work properly again. To this day, I am unable to do
a sit-up, I have very little stomach muscle control, and although I am very
strong in my core from personal training and taking TRX exercise classes, I
mostly use my back to hold myself up when doing such things as planks and
pushups. But at least I can still do
them and I am thankful to have any muscle control in my abdomen.
School was
just starting as I was released from the hospital, but I’d have to stay home a
few days and rest before I could go back.
I missed the first four or five days of school. My mom walked inside with me. I really didn’t want to go to school at
all. I knew it was going to be awful. We met the secretary in the front office and
she showed me around the school, gave me my class schedule, showed me where my
classrooms were, and where my locker was.
I was
already behind. I had extra work to do
to catch up. I was a good student, so it
wasn’t a big deal, but I always felt like I was playing catchup. I felt like all I did was get knocked down,
just to get back up and start running again to try to catch up with the pack,
only to get knocked down again. The
whole thing felt futile. But what else
was I going to do? I was only eleven and
I had to go to school, try to fit in, and just get through it. Growing up is tough for everyone, no matter
how easy you have it. It’s hard enough
to go through puberty and becoming a teenager when your body is perfectly
normal and you have everything going for you.
Middle school was tough for me. It was like a black hole. A lot of it I don’t remember (thankfully), just that I was pretty lonely and I didn’t fit in well. I didn’t go through puberty like most of the other girls. I was significantly growth delayed from all my surgeries and subsequent health problems. I was geeky, freaky, and completely insecure, not unlike many kids in middle school. But I just wanted to be normal, in the sense that I didn’t have a genetic mutation making me different from everyone else I knew. I wanted to feel like I wasn’t in “the only one club.” I didn’t want to feel alone anymore.
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