This past Saturday, I attended Alex's Lemonade Stand Foundation's 3rd Annual Cancer Symposium. This was my second time going to this event, and it's grown tremendously already. This event is made up of a series of informative talks and discussions about childhood cancer. It is held at a hotel, and is filled with different sessions spanning across the whole day. You can pick and choose which to go to, and at the end of the night, they also hold a dinner and dance for the attendees - all free of charge.
Last year my mom and I went mostly to see what it was about, and because of my personal tie to Alex's Lemonade Stand. We enjoyed it, but found that it didn't have a lot of sessions that appealed to me or others in my situation; namely, that of teens/young adults with cancer, or with long-term patients. Most sessions were aimed at very young patients, or newly diagnosed patients, or survivors. I don't fall into any of those categories. There were two sessions we attended last year that we enjoyed - one was an overall look at childhood cancer (my mom and I learned a lot from this!), while the other was a fundraising talk. They were done well, but it was a shame that, out of a full day of sessions, these were the only two that I felt had any relevance to me.
After that first event, I was talking with one of the organizers. She asked if my mom and I had any feedback about it, so we told her that, while we were happy with the ones we went to, we felt like there could have been much more. We ended up talking with this organizer for over an hour, as she was very interested in hearing what kinds of events and discussions we would like to see. So, we were very excited when we got the schedule for this year's Symposium and saw that it included a ton of the suggestions we had made! There was a whole separate schedule for adolescents/young adult patients, known as AYA patients. There were also round-table discussions for just the parents, and just the AYA group. There were crafts and art therapy. There were little kid sessions. There was pet therapy. There was a session on alternative pain therapies such as massage. It was fantastic.
We got there early enough to catch the end of their breakfast, and then we listened to the inspirational speaker. She was 25 and had been diagnosed at 19, and was now involved with a Childhood Cancer committee. When she was done, my mom and I went off to our separate parent/AYA sessions and didn't see each other again until lunch. My first two sessions were given by the same woman, someone from Virginia who had worked as a teacher for a long time until she got involved with helping AYAs with cancer as an Educational Consultant at VCU Medical Center. Her sessions were Coping with Cancer and Transition: High School to College and Beyond. At first, it was just me and one other 15-year-old girl in this session. I was a little worried it would be awkward, but we ended up being able to talk very easily and openly - perhaps because it was so small. It did feel good to talk to another patient, even though we had completely different experiences and I didn't necessarily feel like I needed these particular sessions much; I somehow never had a hard time coping, and I had already gone through the transition of middle school to homecare to high school to college. Of course, in my case, that could have gone better, but I had done all I could and all that anyone could do, and just found that, at least for now, it was not the right option for me. But I picked up a few good tips, and I felt like I was at least a little bit of a help to the other girl. I hope so. Later on, a few other AYA patients joined us, and throughout the later sessions, there were maybe 7 of us who would go along to them all. Sometimes one patient might choose to skip a session, but by the end of the day, I felt like I knew all of them pretty well, and that made the day worth it for sure. We had one session that was just a round-table discussion, where we felt free to talk about anything. It was really interesting. The inspirational speaker from earlier on was there, and I found we had a lot of the same views on things now, even though we, too, had completely different experiences. Another girl was the sibling of a young boy with cancer, and I really enjoyed her take on things, since I'm not always sure how my brothers have felt. There was one 13 year old boy in our group, and I was worried he'd be uncomfortable talking with a group of older girls, but he surprised me by jumping right into our conversations and participating in everything. It just showed me how much of an effect cancer has had on us all in terms of our comfort levels and our confidence. Not once did I feel uncomfortable sharing anything with any of them, nor did I ever get the feeling that any of them felt that way. It was a great experience. Even though I've been doing this for 8 years, I really haven't had many opportunities to talk with others close to my age, so this was really exciting to me. I've exchanged emails and contact info with a few of the others, and I plan on writing them again.
I'm amazed at how much Alex's Lemonade Stand did to put this event together, and so much was added to it this year that wasn't there last year. I'm excited to see what they'll put together for the next Symposium!
Monday, June 20, 2011
Friday, June 10, 2011
Thoughts After Another MIBG Scan
This past Tuesday, I went back to CHOP for Part 1 of my usual MIBG scan. These scans occur every 8 weeks as check-ups to ensure that my cancer is not growing, and to see if my chemo is having an even better response by getting rid of the little bit of cancer I still have. For about a year now, they've been coming back "great", to use the exact word of my doctor. They actually come back "negative", meaning they do not see active tumors anymore. This is definitely great news! But it does not mean I am in remission. I do still have tiny spots of cancer throughout my body; my doctor always calls this "smut" - I don't think that's a technical term. ;) However, these spots are not showing up as active, or malignant. Of course, there's always the possibility that they could become malignant, which is why I'm still pursuing so many different treatment options. We want to make sure that I'm still fighting against it, instead of laying low and inviting it to come back and invade harder than before.
If I have to still have cancer, this is not a bad scenario. I can keep fighting but also heal a bit and continue to get stronger. Taking trial chemos means that there's always the possibility that something will work really well and completely get rid of everything; but even if that doesn't happen, which is still unlikely, I have a good chance of keeping things stable for a while. This is how it's been for over a year now, and it keeps getting better. I'm happy with that.
I got the results back for this most recent scan on Wednesday, and once again, they're "great" and coming back "negative". My doctor made sure I was doing well with this current chemo, made me another appointment for the same kind of scan in another 8 weeks, and sent me on my way. This is pretty much the way of things now. For a cancer patient, I have surprisingly little interaction with the hospital right now - and as much as I dearly love the people there, I'm terribly happy about it. Sure, it would be even nicer if I didn't have to make that appointment in 8 weeks, but it's so far away from how I started this cancer journey. Every step away is a good, strong step. And one day, the scan is going to come back even better than great, and I will take my last step out of that hospital.
Thursday, June 9, 2011
8 Years, and Doing What You Have To Do
It's a bit of a startling fact to realize that I've now been undergoing treatment as a cancer patient for more than 8 years. I was first diagnosed with neuroblastoma on May 1, 2003, and today it is June 9, 2011. That's almost half my life. It's the time a student goes through college and med school; no one can argue that I have not gotten quite the education out of this! In fact, I've been at CHOP for longer than some of my nurses. Almost a scary thought.
But the thing about living my life like this is that this is my life. This is what I know, this is what I've dealt with for a long time, this is how I live. Is this how I would choose to live had I been given the choice? No, I really can't picture that being the case. But is this how I would choose to live had I been given this exact life over again? Yes, because I have learned to adapt and turn this into my own brand of normal. I don't know anything else; I have never experienced another life that I can compare this one to. That's why I can deal with things the way I do: just by living this life and taking the necessary steps to ensure that I can keep on living it.
That's what it's all about for me. Doing what I have to do. I cannot imagine that if anyone else was in my position, they'd do it any differently than I have. At a young age, I was given the choice of obeying my doctor and my parents, or making them force me to obey them, or suffer by not getting help for the disease that was slowly taking over. Really, all three of those options would have been painful! So it seemed like the best choice was to go with the one that made it as painless as possible: obeying my doctor and my parents as they told me to try this test and get that checked out. When I was finally diagnosed, it just made sense to keep doing what they told me, because they still knew what was best. Every single one of my reactions to anything that's ever happened to me is the result of me thinking that it just made sense. For me, I do what I have to do to continue my life, in every sense of the word.
But the thing about living my life like this is that this is my life. This is what I know, this is what I've dealt with for a long time, this is how I live. Is this how I would choose to live had I been given the choice? No, I really can't picture that being the case. But is this how I would choose to live had I been given this exact life over again? Yes, because I have learned to adapt and turn this into my own brand of normal. I don't know anything else; I have never experienced another life that I can compare this one to. That's why I can deal with things the way I do: just by living this life and taking the necessary steps to ensure that I can keep on living it.
That's what it's all about for me. Doing what I have to do. I cannot imagine that if anyone else was in my position, they'd do it any differently than I have. At a young age, I was given the choice of obeying my doctor and my parents, or making them force me to obey them, or suffer by not getting help for the disease that was slowly taking over. Really, all three of those options would have been painful! So it seemed like the best choice was to go with the one that made it as painless as possible: obeying my doctor and my parents as they told me to try this test and get that checked out. When I was finally diagnosed, it just made sense to keep doing what they told me, because they still knew what was best. Every single one of my reactions to anything that's ever happened to me is the result of me thinking that it just made sense. For me, I do what I have to do to continue my life, in every sense of the word.
Sunday, June 5, 2011
Boring = AWESOME
Hey, world. I'm still here!
It's coming up to almost a year since I've posted here. Gives me a good chance to reflect for a bit. So many changes, so much the same.
The major change: I've finally stopped taking the Millenium chemo that was causing me so much trouble. It was just becoming too much to deal with, with not enough payout. Plus, I had other options; if there were no other options, I probably would have kept sucking it up and taking it! Thank God for experimental medications, though; they keep coming out and keep saving my mind right along with my life. I'm now taking another trial medication of 3 pills, with one that has a name you'll actually be able to recognize, but probably not in this context! That one, which I take twice a day, is Celebrex - yes, that Celebrex, the arthritis medicine you see on TV commercials and magazine pages. In the Weird World of Science, Celebrex somehow helps both tight joints AND cancer genes. Go figure.
The other pill that I take once a day is Cyclophosphomide, and no, I do not expect you to know that one. Try saying it, though, it's fun. Cy-clo-phos-pho-mide. If you say it loud enough, you'll always sound precocious! Don't have much to say about that one. It's a small, round, white pill.
I take the Cyclo pill at noon (my general waking-up-in-the-morning time - I don't think that has anything to do with cancer, I think that's just me and my nocturnalism), one of the Celebrex pills two hours later at 2 pm, and the last Celebrex pill ten hours later, at midnight. I could have started this schedule at any time; for instance, I could have taken the Cyclo at 8 am, and the Celebrex at 10 am and 8 pm if I wanted, but I don't wake up at 8 am, and I'm still wide awake at midnight. It works for me.
To be honest, this entire chemo regimen is pretty boring. WHICH MAKES IT MY MOST FAVORITE CHEMO EVER. Never, ever, ever, do I take boring for granted anymore. It means there is nothing to complain about at all, and somehow, I am now taking a chemo that has left me with no complaints. NO COMPLAINTS. ABOUT CHEMO. PLEASE FREAK OUT WITH ME HERE. This chemotherapy has had no bad side effects. I don't get nauseous, I don't get weird pains or sores anywhere, I don't have any kind of blood/platelet loss, I don't even lose my hair; in fact, it's growing back in again. People have been telling me that I look healthier than they can remember ever seeing me, at least in a very long time. It's crazy. I can't believe I can say that I'm on a chemo and looking and feeling healthy. I mean, what is this?? This is 2011. This is good.
It's coming up to almost a year since I've posted here. Gives me a good chance to reflect for a bit. So many changes, so much the same.
The major change: I've finally stopped taking the Millenium chemo that was causing me so much trouble. It was just becoming too much to deal with, with not enough payout. Plus, I had other options; if there were no other options, I probably would have kept sucking it up and taking it! Thank God for experimental medications, though; they keep coming out and keep saving my mind right along with my life. I'm now taking another trial medication of 3 pills, with one that has a name you'll actually be able to recognize, but probably not in this context! That one, which I take twice a day, is Celebrex - yes, that Celebrex, the arthritis medicine you see on TV commercials and magazine pages. In the Weird World of Science, Celebrex somehow helps both tight joints AND cancer genes. Go figure.
The other pill that I take once a day is Cyclophosphomide, and no, I do not expect you to know that one. Try saying it, though, it's fun. Cy-clo-phos-pho-mide. If you say it loud enough, you'll always sound precocious! Don't have much to say about that one. It's a small, round, white pill.
I take the Cyclo pill at noon (my general waking-up-in-the-morning time - I don't think that has anything to do with cancer, I think that's just me and my nocturnalism), one of the Celebrex pills two hours later at 2 pm, and the last Celebrex pill ten hours later, at midnight. I could have started this schedule at any time; for instance, I could have taken the Cyclo at 8 am, and the Celebrex at 10 am and 8 pm if I wanted, but I don't wake up at 8 am, and I'm still wide awake at midnight. It works for me.
To be honest, this entire chemo regimen is pretty boring. WHICH MAKES IT MY MOST FAVORITE CHEMO EVER. Never, ever, ever, do I take boring for granted anymore. It means there is nothing to complain about at all, and somehow, I am now taking a chemo that has left me with no complaints. NO COMPLAINTS. ABOUT CHEMO. PLEASE FREAK OUT WITH ME HERE. This chemotherapy has had no bad side effects. I don't get nauseous, I don't get weird pains or sores anywhere, I don't have any kind of blood/platelet loss, I don't even lose my hair; in fact, it's growing back in again. People have been telling me that I look healthier than they can remember ever seeing me, at least in a very long time. It's crazy. I can't believe I can say that I'm on a chemo and looking and feeling healthy. I mean, what is this?? This is 2011. This is good.
Thursday, August 5, 2010
Breathe, think.
A cycle of chemotherapy has just ended, which means I no longer have to take 2 chemo pills before going to bed and dealing with the fog and haze of my mind, as I have been doing for the past 7 days. Now, I have 2 weeks off the medicine, but this first night without it always does weird things to me at night.
It feels like my heart skipped a beat and never got back on the right track. It's not wild or pumping harder than usual - it just feels off. And my head is clear, but my body is not used to that. It's had to adjust at this time every night for the past week, and now it's not sure if it wants to adjust back. My mind and my body don't want to coordinate tonight - they can both appear to be at peace but still hold a grudge against the other, which prevents the two from ever really connecting - and I cannot sleep until the two come together.
I time my breaths (inhale, 2, 3, 4, 5, 6, 7; exhale, 2, 3, 4, 5, 6, 7; inhale...) but my heart won't match; I count my heartbeats but I forget to breathe. I try to think of good things but my body protests and makes me lose my train of thought. I stop noticing my body only when my brain thinks of too many conflicting things.
What do I do what do I do what do I do.
Breathe; think. Think; breathe. Both, now. Too much. Breathe, think. Think; breathe. Both, now....
It feels like my heart skipped a beat and never got back on the right track. It's not wild or pumping harder than usual - it just feels off. And my head is clear, but my body is not used to that. It's had to adjust at this time every night for the past week, and now it's not sure if it wants to adjust back. My mind and my body don't want to coordinate tonight - they can both appear to be at peace but still hold a grudge against the other, which prevents the two from ever really connecting - and I cannot sleep until the two come together.
I time my breaths (inhale, 2, 3, 4, 5, 6, 7; exhale, 2, 3, 4, 5, 6, 7; inhale...) but my heart won't match; I count my heartbeats but I forget to breathe. I try to think of good things but my body protests and makes me lose my train of thought. I stop noticing my body only when my brain thinks of too many conflicting things.
What do I do what do I do what do I do.
Breathe; think. Think; breathe. Both, now. Too much. Breathe, think. Think; breathe. Both, now....
Friday, May 14, 2010
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.
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.
Thursday, May 6, 2010
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.
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.
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