(Due to how much I have had happen in regard to medical things, I have to break this up into seperate posts. This could truly be a small book if I were more gifted with writing and able to write one. I do plan on printing the posts and saving them for Owen and Hannah to someday know what I went through).
My cousin Laura died when she was 8 years old. I was a confused little kid. I spent from age 5-8 thinking that I would also die because some people had said Laura and I resembled. I look at pictures and don't see it. Laura Beth was a lot prettier but we had the same haircut at the same age so maybe that was why people thought we resembled.
I can still remember closing the bathroom door at my grandma's when we had my 9th birthday party. I was SO excited. I wasn't going to die after all. Well, at least at age 8. Age 9 brought on more worry over death but I'll get to that in a minute.
As I said in the previous post, for some years before the original dysgerminoma was found I had been showing signs. I would wake up with a flat stomach and go to bed looking like a starving child with a huge belly and sticks for arms and legs. We have pictures. Had I been a few years older someone may have thought I was about 20 weeks pregnant. I guess I was pregnant--with an ovarian tumor.
How it unravelled is a story in itself. During the time of uncertainty my mom took me to the doctor to be looked at. The doctor said I was swallowing air and that explained the large stomach. I remember him saying I had a fecal impaction and when I found out what that meant I thought it was the most disgusting thing ever.
My dad had gone bankrupt from farming in the mid 1980's and in 1986 when I was 9 he worked at a factory. He had insurance on me and would have until the first surgery was paid for. Then he somehow mysteriously had to be laid off with all the companies' newer employees. He had more seniority than anyone else during that period. They offered him insurance on me for $1200 a month but he was still paying on farm losses and in 1986, $1200 a month was a lot. Shoot it is still a lot. That is my husband's gross income for a 4 week month.
At this factory, they had picnics each year. They also had games. One of the games we played was the wheelbarrow races. My partner was a friend but an extremely competitive friend. I had little power in my upper arms and she didn't want to be the wheelbarrow. Eventually I gave in and we entered the race.
We were almost winning when I couldn't keep up the pace in my arms. She dropped me flat on my stomach. I KNEW something had happened but I didn't know what. It felt like a great big sword had wiped into my life and changed things. Everything seemed different. Everything was different.
I had bouts with nausea prior to this incident but following the fall I was at the point where I could hold down nothing at all--not even water. This presented a problem. I had been sick a lot in the past and my parents didn't want me to have to go before the school board to not be held back in the 4th grade so that Monday, I went to class. I made it through ten minutes of first period Art class before the teacher made me go to the restroom where I succeded in losing my breakfast.
I still remember waiting on my mom to pick me up. I thought that I had the worst flu ever. Nowadays we live near the school where I went at that point and there is still a couch cushion there. I remember what was going through my head when my mom pulled up to get me. It was confusion and disgust with feeling so terrible all the time.
My dad ended up being the one to take me to the doctor's office. I have never in all my 31 years had someone look at me and say "you look like you feel terrible we are going to clean a room out for you to rest before the doctor comes in." Well, at this appointment they did this for me.
So, I laid there. I don't remember what I was thinking except that boy I seemed to see the doctor a lot. The doctor felt of my abdomen and there it was.
It felt like a ball the size of a grapefruit. It wasn't though. I was planned to have a ct-scan because I couldn't hold down contrast the day I visited the doctor but what ended up happening was that my parents took me to the ER that very night. I remember the doctor saying "now if this doesn't help her pain, bring her in." The thing is--it helped. The pain was still there but I was curious about the ER and I still knew something was bad wrong. About a month before the factory picnic, I had thrown up on the way home from my favorite aunt's house. We were sitting on the couch and a St Jude segment asking for fund raisers came on. I was so sick I didn't remember but my cousin did. She said my dad said "at least you aren't as sick as those children are."
How I wish he had been right.
They went in on a very early morning for an exploratory lap not knowing for sure what the mass was. Years later I spoke with one of the nurses and she said everyone in the room cried. It was horribly obvious that this was a cancerous mass. I was very tiny at that age and the tumor was the size of a grapefruit.
The surgeon Dr. Hill brought the tumor out to show mom. Why I have no idea. Mom almost fainted. Who could have dreamed a 9 year old girl in the dinky town of Pocahontas Arkansas had an ovarian tumor? My parents faced the cold hard facts while I began the stages to acceptance. It is odd to me how they are the same no matter what a person's age was. I denied I had cancer.
I was also confused. I didn't know the difference between a tumor and cancer like leukemia. Mom kept telling me over and over that I HAD cancer and was now better. The margins showed no metastisis and for six years we believed that. Mom's plan was to wait until I went to St Jude and let them tell me what was wrong but I found out before that. In an odd turn of events, my entire fourth grade class knew I had cancer before I did thanks to a big mouthed teacher.
When I returned to the fourth grade, I was asked if I had cancer. This wasn't the first time. The first time had been when my best friend called the hospital and said our reading teacher had told the class I had cancer when someone asked where I was. My friend asked me if I had it. I denied it. I also denied it when asked at school though the kids knew my busy body teacher had no reason to lie and that after the surgery I was sent to St Jude Children's Research Hospital in Memphis, TN. I had to face up to the fact that it wasn't just "old men (he was 49 at death)" like my grandpa who smoked who got cancer. Kids got it too. I was sent to St. Jude for further evaluation of the staging of the tumor since it appeared to not be entirely encapsulated. Tests were done and clear but another surgery was needed and I'll pick up there with the next blog entry
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