What's Going On Right Now, and What Could Go On Later

I had some much-needed long talks with my parents about what kind of future I might be able to have. I'm at some kind of crossroads right now, and I'm not sure what it is. I just feel like something's going to happen, and soon. Something has to change. I can't keep sitting around like a lump all day, but I can't go out and do just anything with all of my health issues. As much as I love learning, I can't honestly say that I love college. When I'm healthy, the classes are too easy. When I'm sick, the workload is too hard. There is no middle ground. I'm either bored or I'm drowning. What to do from here?
Everyone around me is getting jobs; my friends all have jobs or internships, and even my brothers are now working. This should be the time when I'm out there, getting an internship in New York City at some book publisher with the connections from my college, or the time when I take a semester abroad to Florence, studying art history. Instead, I'm sitting here on the couch at 1:04 am, just as I have been for the last 12 hours. It's not my choice, exactly. It's just what I have available. I can't go out and get a job - jobs need schedules, and I don't have the ability to commit to a schedule. Same with internships. I don't have the physical strength for long workdays, or grunt-work. I can't go off to another country, especially not by myself, in case something happened and I needed to get to a hospital immediately. Of course there are hospitals everywhere, but I am an anomaly; I don't respond to normal treatments well. I need high-tech equipment.
What are my options? There are so many things I want to do, or would like to do, or wouldn't mind doing; but none of those things are things that I can do right now. I need to find something that I can do. I have a million interests, but what is going to be able to fit my life?
I told my parents that I sometimes feel like the first astronaut, or Christopher Columbus: I'm going into uncharted territory. I am a new species. I am a long-term survivor with cancer. This has never really been possible before now. It used to be that, when you were diagnosed with cancer, you were given a death sentence. I know that. I also know that it doesn't have to be that way anymore with the incredible advances in medicine and technology we have achieved. But even then, the survivors are people who were diagnosed with cancer, fought their battle through chemo or radiation or other therapy, and then went into remission. They are long-term survivors after cancer. There aren't many like me who know that their cancer is probably going to be long-term. This is something my doctors and my family realized a few years into my battle. The absolute best we can hope for is still remission; but the more probable hope is that my cancer remains stable and treatable as a long-term disease. It is something I am most likely going to have to live with for a very long time, with little hope of remission but without such high risk of death. If that's the best I can get, I'll take it. But people don't know how to deal with this yet. My doctors don't; my parents don't; I certainly don't. How can you expect others to know how to deal with it if we don't know? There are no resources available to me. I have to forge my own path. It's scary as anything, to feel so alone. My faith in God helps - the belief that I am not really alone. But He is not the one who can live my life. I have to do that, and I have to figure out how to make the best of it. I'm going to have to figure out what to do from here; and I will. I can't see it yet, but I will.

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.

May 2nd

I'm posting this on the 3rd, but I wrote this yesterday.

May 2nd. 3 am. I just realized I missed the 7th year anniversary of my cancer diagnosis. May 1, 2003, I was diagnosed with neuroblastoma. Whoever thought I'd make it this far? Whoever thought I'd still have so far to go? By now, I realize it's most likely going to be a life-long disease, no matter how long that life may be, and how much of the cancer disappears. I'll always have to live with the side effects, and there's so many of them - physical and mental. It's okay though, I think. I'm mostly, usually alright with this; my only other choice is to give in, and after 7 years, there is no chance of me doing that. There wasn't a chance of that after even 1 day, really. But lately I've been freaking out a little - is this how it's going to have to be for the rest of my life? Never being able to make definitive plans? Always being set apart - an exception?
If so, then, I guess, so be it. I'll still be fighting for another way, of course. But I'll deal with whatever form of life I'm given.

The Kindness of Everyone

I came downstairs about half an hour ago because I felt nauseous and was beginning to experience one of those other painful side effects of this chemo: random joint pain. I got out the Zofran and some ice to numb the pain of the heel. Normally I'd grab some Tylenol, too, because that will help take away the edge of the pain. Unfortunately, my family and I were at a family get-together earlier in the day and left our Tylenol in the car. I didn't want to go out and get it now because a) it's 4:30 in the morning, and b) my heel hurts. I figured the ice would help at least dull the pain a bit, and the Zofran would take away the nausea. I'd have to make do. I began to get ready for an uncomfortable night on the couch with an ice pack at my feet and a bucket nearby just in case, when I heard someone walking around upstairs. I knew it had to be my mom or my dad, because my brothers never wake up during the middle of the night. I waited until they had come out of the bathroom, and then I called up to whoever it was. My barely-awake dad stumbled out, and asked what was wrong. I told him that I wasn't feeling well and that my heel really hurt, so I had come downstairs for some ice and Zofran. I told him that the Tylenol was in the car so I'd just sleep down here with the ice, and that I just wanted to let him know so that he didn't get startled when he came down in the morning. He mumbled something in reply and I interpreted that as being close enough to understanding, so I went back to the couch.
A few minutes later, my dad came downstairs. "I'll go get the Tylenol," he said, and walked out the door in just his pajama pants at 4:30 in the morning.
For some reason this almost made me cry.
Back during my senior year of high school, when I was on my Senior Class Trip to Disneyworld, a similar thing happened. To this day, I'm not exactly sure what made my foot swell up and ache to such epic proportions, but it did, and by the end of the very first day down in Florida I was confined to a wheelchair for the rest of the trip. When the nurse told me in my hotel room that I probably shouldn't walk on it and that she'd get me a wheelchair, my hotel roommates - all of whom I had barely spent much time with recently - assured me immediately that they'd be happy to push me around in the wheelchair and take me with them.
I immediately started crying.
It actually makes me laugh to think about, because they all got so worried that maybe my foot was hurting more, and they all told me it was okay, that things would be okay. Two things about this are funny: the first thing is that they were right - things were okay, then and after; we became good friends after that trip. The second thing is this: I wasn't crying because of the pain. Not at all. I've cried because of pain before, but it takes so much more than a swollen foot to get me to cry because of pain! I was crying because I wasn't expecting that sudden rush of love that they all showed me then and there. They didn't have to do that; I wasn't even expecting it. Same with my dad tonight; he didn't have to get me the Tylenol. Heck, I didn't even know he was paying attention. But just that extra bit of care really got to me. And maybe there's something more to it. Maybe I was crying also because of how often things like this happen; maybe I was upset that I even needed the Tylenol, or somebody to push me in a wheelchair. Maybe it was a combination of everything. But the thing that definitely pushed me over the edge was the simple unexpected kindness.
So, thanks. To everyone who has ever shown someone a kindness when they didn't have to and when nothing was expected in return: thanks. Maybe someday someone will write a blog post about you.

Ice Cream/Lemonade/Anything for Cancer Research!

Everyone's a winner when they join the fight against childhood cancer throughout Massachusetts, Connecticut, Rhode Island, New York, New Jersey, Washington DC, Maine, Maryland and Virginia. On Saturday, May 1, the EDY'S brand and Stop & Shop/Giant Food stores are partnering on a special Triple Winner fundraising day that will benefit local cancer research centers.

Ice cream cups are a great snack anytime, but on May 1 you can enjoy them free while donating to Triple Winner charities. Donate $1 and receive a free EDY'S, HAAGEN-DAZS or THE SKINNY COW ice cream cup. Donate $3 and you'll receive the free cup and a limited edition Triple Winner keepsake.

My mom and my brothers, plus their church youth group, all happened upon this today my mom and I each took a carload of some of the kids from the youth group to Stop & Shop. The youth group had been participating in something called, "The 30 Hour Famine", which is a great movement to fight hunger. More can be read about it here. In any case, it surprised me to see a promotion giving away free single-servings of Haagen-Dazs ice cream for every $1 donation made to childhood cancer research! I'm always surprised to see organizations raising money for childhood cancer research, because it's often overshadowed by other diseases and cancers in general, and especially breast cancer. Those are great causes too, for sure, and I'll try to help out whenever I can. But when I see people trying to help in the fight for childhood cancer specifically, you know I will be there doing what I can. So what to do except give the guy working the table $10 and then get 10 little ice cream in return? ;) That was certainly a bonus, and my mom and I both kept an ice cream, but we gave the others to the youth group to have later. When I see these kinds of booths, I am definitely going to go over there and donate or help out, but for some reason I'm never sure if I should go up there and be like, "Hey, you're raising money for childhood cancer - what a coincidence, I HAVE childhood cancer!" Of course, I wouldn't say it like that, but that's what it comes down to. And then I think, "What good is that going to do for them? They don't know me." It can be uncomfortable to just walk right up to someone and announce, "I have cancer." I'm okay with the fact, but it will always make the other person uncomfortable - how are you supposed to respond to someone who announces suddenly, out of the blue, that they have cancer? That makes it hard to meet new people sometimes. I'm always wondering, "When do I tell them? DO I need to tell them? I don't mind telling them. I don't mind saying anything about it or answering any questions. But I don't want them to feel like they can't be themselves around me anymore. Maybe I shouldn't tell them. Or maybe I should tell them first thing. No, I'll just tell them later. We'll see if it comes up." Right. It's going to just magically "come up". It sounds crazy, but this is a dilemma to me! There's always going to be an awkward hesitation when I tell people I have cancer. There are always going to be people who treat me differently - more fragilely - after I tell them.

But for some reason, today I just went right up to the booth and told the boy working there, "Hey, I'd like to donate this money. Thanks for doing this, I have cancer myself so it means something to me."

And wouldn't you know it? He hesitated a slight bit, as always, but then continued chatting with me. And he was nice and treated me normally! He asked a few questions, then apologized if he was being insensitive; I answered the questions, no problem, and told him he wasn't. And just like that, things were normal.

Before I left to bring my car full of kids back to the church, he told me I was brave and wished me luck. And that was that.

It's helped me realize that, while it may not make a difference to the people working the booths and activities for cancer research, it makes a difference to me. And maybe I might just end up making a difference in their lives after all.