Before

I've been thinking about the beginning of everything - this entire crazy cancer journey - and I know I just said it's been 7 years, but that only goes back to the diagnosis. What I've realized is that people don't know that I was sick for much longer than that. In all honesty, it probably goes back 12 years, to when I was 7 years old, and it's incredible that I was able to keep this a secret without even truly trying for so long.
For the first 6 years of my life, I almost never got sick. As a baby I had bad ear infections, but that's about it. My mom and brothers, when they came, were prone to colds and stomachaches and any virus that went around. My dad and I almost never caught anything, and I don't ever remember catching a cold until I had begun cancer treatment and my immune system was damaged.
Now, this part goes past my memory, so I can't remember this actually happening, but I have every reason to believe it. My mom tells me that back when I was 7 years old, I'd sometimes wake her up in the middle of the night complaining of stomachaches. The thing you have to realize first and foremost is that I was a devious child (still am!), and that I hated going to bed at night. One of the first "big words" I learned was "nocturnal", and I used it all the time because it fit me so perfectly. I am a night creature, and I rarely go to sleep before midnight when I don't have to. In fact, even when I have to, I'm rarely able to. It's been this way since I was a baby. These are important facts to know because my mom, knowing these things, believed I was probably just stalling to go to bed and was looking for an excuse to stay up later than my bedtime, so she would just comfort me a little bit, then send me back to bed. To this day, she feels bad about it, but I don't blame her; I easily could have been doing exactly that! And it was still a kind of rare thing; I probably only went to her in the middle of the night a few times that year. But, as I got older, I began going to her more often, so that she began to think that maybe something really was wrong. And that's about the time I actually started throwing up, which convinced her completely that I wasn't making anything up! We went to doctors, but they told us it was probably just stomach bugs, and because at this point we had no other reason to disbelieve them, we went with it and tried to accept the fact that suddenly I was more susceptible to viruses than I had ever been before.
Unfortunately, it didn't stop there. I began feeling sick more often in the daytime, and in 4th grade, it finally got to the point where it was starting to interfere with some of my normal activities. When my stomach started hurting, there was a good chance I'd throw up, and once when I was over at a friend's house, I managed to warn my friend's mom that I was feeling sick just in time for her to get me to the bathroom, where I promptly vomited and then went back home with my mother, who had been called. I no longer wanted to attend sleepovers because I was worried I'd get sick.
This wasn't even close to the worst of it, still. I kept growing older, but not bigger. I was in pain even more often. Because I was throwing up so constantly, I wasn't gaining weight. I was stuck at 60 lbs, and in middle school I still fit into the clothes I wore in 3rd grade. By the time I had entered sixth grade, I was in pain almost every day, and all of the activities I used to do were becoming too much for me. I quit piano. I quit horseback riding. I rarely went to anyone's house. Instead, I started going to doctors more and more. Again and again, though, they'd have nothing to tell me; no one had any answers. They'd pass me from one specialist to the next, and even from one psychologist to the next, because they were failing to find anything physically wrong, so their next bet was that it must be something mentally wrong. I went to food psychologists, family psychologists, child psychologists. The food psychologists were no help, because I ate, but I couldn't hold down my food. The psychologists all believed I was perfectly well-adjusted. But no one could deny anymore that something was definitely wrong. By the 7th grade, I could no longer stand up straight because it hurt my stomach so much. I was in pain constantly. I participated in nothing. I was still 60 lbs and dangerously thin. I was supposed to drink things like Ensure and Boost, but I hated the taste and they hurt my stomach too. I tried, though, but they never made a difference. My parents knew the problem was physical, but couldn't find a doctor to prove it, and didn't know what to do. The doctors' appointments continued, but now my parents constantly warned me that I might have to be admitted to a hospital, and begged me to drink the Boost or I'd have to get a feeding tube or something, because I was that dangerously skinny. They hated doing it, because they knew it was hard for me, but they didn't know what else to do. No one did. At that point, I had already had x-rays and barium swallows and even a colonoscopy, not to mention endless blood tests, and nothing was working.
And through all of this, I continued going to school and even to Girl Scouts, which required nothing of me other than my time, and which was so much a part of me by then, after having been a part of it since kindergarten, that I couldn't have stopped going even if I had wanted to. At these places, I was a normal, quiet, smart girl. People could see I was skinny, but other than that, I was just another student. There was not a single other student in that school who knew my entire story. There was not a single other student in that school who knew that I was in pain so often. To be honest, I'm not even sure my parents knew how much pain I was in, or how often. I might have hid it a bit from them out of fear of more tests, although I also realized there was nothing else they could do that they weren't already doing. I never deliberately hid it from people at school, though; it was more like it just never came up, and I wasn't about to offer it up to anyone because who would want to hear that? I can't remember it all clearly, but I'm pretty sure my teachers had been warned by my parents and the principal, etc. that I was often sick and would be allowed to go to the bathroom or nurse whenever I needed, but even they didn't know why. How could they? My family and I ourselves didn't know why.
About a month or so before 7th grade was going to let out for the summer, my science teacher was talking on the phone while I was working on a project in that class with my best friend. The teacher, Miss W., called me over when she hung up, and told me that I was wanted at the nurse's office. I exchanged a glance and a shrug with my best friend, then walked down to the nurse. Once there, the nurse guided me to the back of the room with all of her equipment. She proceeded to sit me down on a chair, lift up my chin, and look at my eyeballs through her ophthalmoscope. Then, without explaining anything, she went, "Alright, back to class with you."
What???
I had no idea what had just happened, or why. But, because I had more important things to consider - namely, lunchtime, and getting through the rest of my classes that day - I put it out of my mind and went on with my school day. I didn't even think about it again until my mom came to pick me up from school as always. While getting into the car, I told her, "Oh, hey, something weird happened at school today. Miss W. told me to go to the nurse's office and the nurse looked at my eyes and then just told me to go back to class. I don't know why. It was strange."
"I know," said my mom, "she called me."
Again - what???
"I know," said my mom, "she called me. They think you might be jaundiced. I guess one of the teachers noticed and called the nurse and had her take a look at you, and the nurse called me to tell me that she thinks you are jaundiced."
"What's 'jaundiced'? And who told her? What does that mean?" I asked.
I had no idea I would soon become very familiar with words like "jaundice", and even bigger ones, like "neuroblastoma".
My mom told me then, "Jaundiced means your skin and eyes look yellow. It might mean something's wrong, so we have to go see a doctor."
Something interesting is that, because at that point I was going to the doctor's so often, I already had a scheduled appointment for the next day. After my mom had gotten the phone call from the nurse, she had immediately called the doctor, who told her that as long as there wasn't anything else out of the ordinary for me, then he believed we could just keep that appointment and see him then, instead of rushing to the hospital right that day and be forced to wait for hours in the ER.
It was at that appointment the next day that my doctor ordered an ultrasound, one of the few tests I had yet to have. He also took more blood tests and checked me over all over again, but still found nothing. In the meantime, I was still yellowish, but without the ultrasound, he couldn't find a reason why. So, we'd have to wait for the results of that ultrasound.
It was the ultrasound that finally led to my diagnosis on May 1, 2003. And that's when all of the chemo and surgeries and radiation and medicine began, which is much more like that of a cancer patient. It's what everyone who knows me knows about. But I've realized recently that none of those people know what it was like before that. So, here it is. 7 years? Not quite. The doctors insist that I didn't have the cancer mass for long before the diagnosis, but clearly there was something going on for a long time before that. Maybe there wasn't a mass. But there was definitely something. 5 years before the 7 years of officially having cancer.