I don't remember when we first went to St. Jude in Memphis. I just know that my mom's mood was dark and I was very confused because she insisted I was going to be just fine. I wondered about school and how I would catch up but it wasn't the first thing on my mind. When the doctor said I would need an operation as a biopsy surgery to where they found the original tumor, I grew angry. My dad asked "Couldn't she wait a while she's not even over the other." My mom and the doctor both said that if I had metastatic disease then it would be best to know it then to start treatment. I asked if I would be able to try out for pee-wee cheerleading which started in the 4th grade and was told absolutely not. This was the most heartbreaking news of all for me, I think. I didn't catch how serious what I had been going through was.
Halloween 1986 came and went. I was a clown that year and we have a picture of me attempting to smile but it wasn't easy. I knew I would have surgery again in a few days and wasn't looking forward to it. I had a habit of swallowing gum when I was 9. After my surgery my dad joked that the doctor couldn't get in due to my insides being stuck together. It was a lie. He did get in.
Back in 1986, St Jude hospital used St. Joseph's OR and there was a tunnel that connected them. I remember being pushed back and hurting very, very badly. The orderly wouldn't slow down though. He knew I needed to get to the room and that be it.
I don't remember a lot until the phone call when mom was told it looked like the cancer hadn't spread. Also I remember being asked to get up and walk around. Oh how I hated it. I moaned and groaned. Until I saw a little 5 year old practically racing around the nurse's desk not moaning at all.
I couldn't let someone a little more than half my age outdo me. Of course I didn't realize he had a brain operation and it wasn't going to hurt him as much to walk as it did me because my abdomen had been cut. This time the doctors tried to leave my belly button but the first surgery had mutilated it. I had a huge gash on my stomach and the wound was still yellow in part due to the betadine bath in the St Jude bath tub the night before and the betadine from surgery. It was U-G-L-Y.
I remembered back to the one before when my mom and the doctor discussed scars and keeping it where I would be able to wear whatever I wanted. Yeah, well, those days were over because 6 years later I would have surgery in the same spot with a much longer incision and it became a glaring scar that everyone could see. My mom and I fought when I was 16 because I still wanted to wear a two piece bathing suit and she thought I wouldn't want to be asked about my scars. I won the fight. I don't remember being asked about it specifically until I went to a different school in the 10th grade and showed it to prove I had went through ovarian cancer. No one believed me but they would a few months later. This all comes later.
I remember a nurse bribing me to eat a grilled cheese sandwich by saying I couldn't go home the next day if I didn't eat it. I cried and I cried. I wanted home from St Jude hospital. I already knew I would feel better when I got there--something that always held true so I choked the sandwich down in between tears. I got to go home. I thought things were going to be normal in a couple of weeks when allowed back in school.
Things couldn't have been much more abnormal.
First of all, I learned of having cancer from my best friend who had learned from my reading teacher telling our class. As a 9 year old I knew nothing about cancer and neither did any of them. When I came back to school, there was a lot of odd feeling. I was allowed to leave to my locker early so no one would bump into my stomach with their books so that may have bred some resentment. I was given more attention from the teachers than I had been. My then best friend said she wished she had a tumor and I told her she didn't know what she was talking about and that she could have mine. Special attention or not I knew it sucked.
Going back to school at this time cooincided with me crawling into a shyness shell I still remain in to this day. From the 4th grade on, I was labelled "Most Bashful" in our "Who's who?" I hadn't been the shy kid before. As a matter of fact, I had been almost bossy but after rejection upon returning to school I was afraid to speak to anyone. There were times kids would cross the hall from me because they honestly thought I was contagious.
Between 1986 and 1992, I returned to St Jude hospital for ultrasounds, ct scans, etc each 3 month, 6 month, and finally one year block. It was on my first one year block that things came unraveled. During this period, I had went through bilateral breast biopsies twice that showed cysts but nothing indicating cancer. Until that very first yearly checkup when my BP was twice what it should have been and my bad mood, going to bed at 4 p.m., and general uneasiness found its cause.
It was about 3 months into a new school year at a new school. I had transferred because I wanted to force myself to not be so shy and to have more friends. It wasn't happening at the larger school I attended so by freedom of choice I went to a small school that no longer exists. Even there I would be teased but the difference is that they worked closely with me and I would graduate with my class in 1995 like I was supposed to but that comes later.
Looking back on that period, I see myself in the two week wait before my laparoscopy to find what was blocking my kidney and causing my blood pressure to rise. I would ask to be excused to the restroom, pull my legs up in the stall where no one knew I was in there, and take my blood pressure. I had been given procardia to take when it got past a certain level and I had to watch it closely. I was ashamed of this and embarassed but each time I tested it was high enough for medication. This went on for two weeks because the doctors thought my blockage was a lymph node.
It wasn't.
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