It's been a while since I felt "normal".
I guess I could mean this in a million ways. For the most part, right now I mean it's been weeks since I felt like my usual self, without any fuzziness or weakness or lethargy or dullness. I have to fight against succumbing to it all. It would be so easy to just sleep and ignore everything in its entirety. But I have to keep going, or I'll never get back up. But it's so hard.
With the chemo, I've had a week of absolute loopiness, 2 weeks of pain with more loopiness, and another week of low blood counts. It's been a month of actually feeling like a cancer patient. Even though I've been going through treatment for more than 6 years, I usually manage to feel pretty well, and it's easy to forget that I have cancer. Maybe that's not exactly what I mean. It's more like, I can go for long periods of time without ever thinking, "I am sick", or "I have cancer". It's just, "I am me." But the great irony of chemotherapy is that it is designed to make you better while actively making you feel sick. When I'm not undergoing any treatment, I feel fine. When I go through a treatment, I feel sick. This has always been one of the most horrible parts of this whole ordeal: the treatment often makes me feel worse than the cancer does.
That doesn't mean I'm ready to stop it. Nor do I believe I'll be ready to stop it any time soon, if ever. I'll keep doing whatever I have to do to get rid of the cancer, because I know in my head that it's the real cause of my pain. I wouldn't need treatment if I didn't have cancer, and if I went without treatment for prolonged periods of time, the cancer itself would start causing pain.
I'm just really ready to start recovering.
Sunday, November 29, 2009
Thursday, November 19, 2009
Chemo #572 or Some Other Ridiculously High Number
Once again, I am on chemotherapy. When I was first diagnosed with neuroblastoma more than 6 years ago, I was told that my "plan" was to go through 5 rounds of chemo, followed by up to 2 stem cell transplants and possibly some other radiation treatment thrown in. That seemed like so much. Now I look back on that and think how little that seems. All in all, that would have taken 1, maybe 1 and a half years.
Clearly, things didn't go according to plan.
I got those first 5 rounds of chemo, and then a stem cell transplant, just like the doctors planned, but then things went wrong. The stem cell transplant didn't take the way they'd hoped it would; I nearly died. To this day there is still a huge gap in my memory from the time that I received that stem cell transplant until the time when I finally started recovering from it. There is a whole February I do not remember.
Since that went so badly, they definitely couldn't give me the second transplant, and things were so shaky that radiation was looking like a bad idea too. But that's when the MIBG treatment came into play for the first time. That really saved me the first time around.
Since then, I've been on more chemos - at least 5 others, if not more. Most of these were oral, so they were "easier" than the first 5. But, of course, they all had their sets of drawbacks. I feel like I've had just about every side effect you could possibly have after undergoing all these different treatments.
Why do I let myself think these things? It only leads to trouble.
Sure enough, enter chemo #I've lost track. This chemo, right now called "Millenium" after its manufacturer, is, like many of my others, a trial drug. This means I'm only on it as part of a study. I had to meet many certain specifics to qualify for this study, and trust me, that was not easy. I could write a novel on that alone if I had to. Hopefully I never have to. It's not that fun. But, I ended up qualifying for a Phase II trial study, which means that Phase I has already been completed. This is actually a pretty good thing; it means that this drug has already been tested on a group of people (albeit a small group of people), so hopefully dosages are figured out and side effects are generally known. I've been on more than my fair share of Phase I trials so I've had the pleasure of being the guinea pig for chemotherapy; I've gotten to test the correct dosage and discover side effects myself. I actually always feel bad for the other people who will in the future end up taking whatever chemo I was on as a Phase I, because I skew results: no matter what, I always tend to do the opposite of what's expected, so I don't think I'm a good judge for what "should" happen for others! I probably scare them when they hear of all the reactions I've had, but in truth it's probably a good thing for them - it means they probably won't experience any of it!
So, Phase II. I was pretty happy. No fiddling with dosages! I'd have some kind of idea of what to expect!
Again, I've got to stop letting myself think these kinds of things. They're dangerous.
My doctor warned me that the major side effect of this drug is "euphoria". Sounds horrible, right? I know. My doctor explained that this chemo was a relative of Ativan and Valium, and that other kids who took this medicine would sometimes feel as if they'd overdosed on Valium for about an hour or two after taking it. Parents described seeing their kids acting somewhat drunk. While some might enjoy this effect, it's really not my thing; I don't like the feeling of not having control. But, as far as chemo side effects go, I wasn't worried. It sounded easily manageable, and that was really the one major side effect besides hair loss, which doesn't bother me at all anymore. I've been through the hair loss thing like 6 times now. It's cool. I know how to deal with that. And I figured I could easily deal with "euphoria" too. Plus, no nausea! It all sounded pretty okay to me. The doctor also mentioned a couple of other possible side effects, such as mouth sores or stomach pains, and did say that I would experience a drop in my blood counts like with most chemos, but in general the chemo was being tolerated pretty well.
So I'm given a bottle of pills and told to take 4 a day for 7 days. I take the 4 for the first day and feel a fuzzyheaded effect, but it wasn't too much. Then, instead of it wearing off, it gets worse. I start to lose focus and can't concentrate on anything; my mom says I could barely hold my head up and she watched me worriedly as I let my head drop to the side. I didn't move from the couch for the rest of the day. But we still weren't worried; this could happen, and we hoped it would wear off while I was sleeping.
But it didn't. I woke up still fuzzyheaded and unable to concentrate; I felt slow and loopy.
This went on for the whole entire 7 days.
Sure, I didn't feel nausea, but then again I didn't feel anything at all except...fog. The doctors kept saying that it would start wearing off, but in truth they couldn't know that. They did know that it wasn't really dangerous since I wasn't going anywhere, and that as long as nothing serious happened (like I stopped breathing), I'd be okay and that there wasn't much to do unless I stopped the chemo altogether. But I had worked too hard to get on that study to just give up the first 7 days I'm on it. I was well enough; I'd keep going.
As soon as those 7 days were over and I stopped taking the medicine, my head cleared up.
Unfortunately something else took its place.
It wasn't the first time I'd had mouth sores; it was just the worst. I'd had them a long time ago after some other chemo, but they were minor; it had just been a few mildly irritating bumps in my mouth, nothing more. But this time, there was pain. The first day started off as just a few mildly irritating bumps, but the second day I felt pricks of pain. By the third day, those first sores had disappeared but new, larger ones appeared, and practically paralyzed the left side of my mouth with pain. I couldn't open my mouth. I definitely couldn't eat. I was hungry, but I couldn't even get water in. I went through that day without anything to eat and with a lot of pain. It was the first time I'd cried in a while. By the second day, the left side felt slightly better; the right start had a new sore though. I managed to choke down some soup. Not much else. More pain. On the third day, I finally felt like I could try something really really soft; I think I had a little bit of mashed potatoes, but mostly ate more soup. On the fourth day, my throat developed a sore. It became near impossible to swallow. But by this point, my doctor had gotten me some Percocet. Oxycodone to the rescue! It gave me some periods of relative ease; while it still hurt to eat, it became more manageable. Unfortunately, the Percocet started making me fuzzyheaded again. It was maddening. I dealt with more mouth sores and pain for the rest of the week, and more Percocet and its effect for the same amount of time.
At the same time, my blood counts were starting to drop. This meant that I was running low on platelets and red blood, and would soon need a transfusion of one or the other or both. I had to get my blood taken and checked every other day, while I was already in pain and practically unaware of my surroundings. I was scheduled for a CT scan and MIBG injection yesterday at CHOP, and an MIBG scan today. Instead, I went into CHOP on Tuesday for a platelet transfusion, which involves me getting premedicated with Tylenol and Benadryl and being knocked out by the Benadryl for the rest of the day. More fuzzyheadedness. I can't seem to escape it. I had to cancel the CT scan because of the pain of sores I still have. I got the MIBG scan today.
The good news is that the MIBG scan showed slightly better results than even the last time, which means that at least the chemo has done something, even if it is slight. Plus, my doctor is going to change my dosage so that I receive less, and hopefully this will help alleviate the "euphoria" and pain. The bad news is, my counts are still low and I have to be careful because I'm at risk for infection. Plus, I have to restart the chemo on Monday.
All in all, it hasn't been a great two weeks, and this week isn't shaping up to be the best one either. I'm really looking foward to Thanksgiving though; I can't wait to see my friends again and just have something normal return to my life. I need something happy. I only hope that I can manage to stay well and that the lower dose of chemo works to prevent me from staying loopy for 24 hours a day. I need to believe right now that I will be okay, that things will work out, and that I will be able to see my friends for Thanksgiving. It's what keeps me going.
Clearly, things didn't go according to plan.
I got those first 5 rounds of chemo, and then a stem cell transplant, just like the doctors planned, but then things went wrong. The stem cell transplant didn't take the way they'd hoped it would; I nearly died. To this day there is still a huge gap in my memory from the time that I received that stem cell transplant until the time when I finally started recovering from it. There is a whole February I do not remember.
Since that went so badly, they definitely couldn't give me the second transplant, and things were so shaky that radiation was looking like a bad idea too. But that's when the MIBG treatment came into play for the first time. That really saved me the first time around.
Since then, I've been on more chemos - at least 5 others, if not more. Most of these were oral, so they were "easier" than the first 5. But, of course, they all had their sets of drawbacks. I feel like I've had just about every side effect you could possibly have after undergoing all these different treatments.
Why do I let myself think these things? It only leads to trouble.
Sure enough, enter chemo #I've lost track. This chemo, right now called "Millenium" after its manufacturer, is, like many of my others, a trial drug. This means I'm only on it as part of a study. I had to meet many certain specifics to qualify for this study, and trust me, that was not easy. I could write a novel on that alone if I had to. Hopefully I never have to. It's not that fun. But, I ended up qualifying for a Phase II trial study, which means that Phase I has already been completed. This is actually a pretty good thing; it means that this drug has already been tested on a group of people (albeit a small group of people), so hopefully dosages are figured out and side effects are generally known. I've been on more than my fair share of Phase I trials so I've had the pleasure of being the guinea pig for chemotherapy; I've gotten to test the correct dosage and discover side effects myself. I actually always feel bad for the other people who will in the future end up taking whatever chemo I was on as a Phase I, because I skew results: no matter what, I always tend to do the opposite of what's expected, so I don't think I'm a good judge for what "should" happen for others! I probably scare them when they hear of all the reactions I've had, but in truth it's probably a good thing for them - it means they probably won't experience any of it!
So, Phase II. I was pretty happy. No fiddling with dosages! I'd have some kind of idea of what to expect!
Again, I've got to stop letting myself think these kinds of things. They're dangerous.
My doctor warned me that the major side effect of this drug is "euphoria". Sounds horrible, right? I know. My doctor explained that this chemo was a relative of Ativan and Valium, and that other kids who took this medicine would sometimes feel as if they'd overdosed on Valium for about an hour or two after taking it. Parents described seeing their kids acting somewhat drunk. While some might enjoy this effect, it's really not my thing; I don't like the feeling of not having control. But, as far as chemo side effects go, I wasn't worried. It sounded easily manageable, and that was really the one major side effect besides hair loss, which doesn't bother me at all anymore. I've been through the hair loss thing like 6 times now. It's cool. I know how to deal with that. And I figured I could easily deal with "euphoria" too. Plus, no nausea! It all sounded pretty okay to me. The doctor also mentioned a couple of other possible side effects, such as mouth sores or stomach pains, and did say that I would experience a drop in my blood counts like with most chemos, but in general the chemo was being tolerated pretty well.
So I'm given a bottle of pills and told to take 4 a day for 7 days. I take the 4 for the first day and feel a fuzzyheaded effect, but it wasn't too much. Then, instead of it wearing off, it gets worse. I start to lose focus and can't concentrate on anything; my mom says I could barely hold my head up and she watched me worriedly as I let my head drop to the side. I didn't move from the couch for the rest of the day. But we still weren't worried; this could happen, and we hoped it would wear off while I was sleeping.
But it didn't. I woke up still fuzzyheaded and unable to concentrate; I felt slow and loopy.
This went on for the whole entire 7 days.
Sure, I didn't feel nausea, but then again I didn't feel anything at all except...fog. The doctors kept saying that it would start wearing off, but in truth they couldn't know that. They did know that it wasn't really dangerous since I wasn't going anywhere, and that as long as nothing serious happened (like I stopped breathing), I'd be okay and that there wasn't much to do unless I stopped the chemo altogether. But I had worked too hard to get on that study to just give up the first 7 days I'm on it. I was well enough; I'd keep going.
As soon as those 7 days were over and I stopped taking the medicine, my head cleared up.
Unfortunately something else took its place.
It wasn't the first time I'd had mouth sores; it was just the worst. I'd had them a long time ago after some other chemo, but they were minor; it had just been a few mildly irritating bumps in my mouth, nothing more. But this time, there was pain. The first day started off as just a few mildly irritating bumps, but the second day I felt pricks of pain. By the third day, those first sores had disappeared but new, larger ones appeared, and practically paralyzed the left side of my mouth with pain. I couldn't open my mouth. I definitely couldn't eat. I was hungry, but I couldn't even get water in. I went through that day without anything to eat and with a lot of pain. It was the first time I'd cried in a while. By the second day, the left side felt slightly better; the right start had a new sore though. I managed to choke down some soup. Not much else. More pain. On the third day, I finally felt like I could try something really really soft; I think I had a little bit of mashed potatoes, but mostly ate more soup. On the fourth day, my throat developed a sore. It became near impossible to swallow. But by this point, my doctor had gotten me some Percocet. Oxycodone to the rescue! It gave me some periods of relative ease; while it still hurt to eat, it became more manageable. Unfortunately, the Percocet started making me fuzzyheaded again. It was maddening. I dealt with more mouth sores and pain for the rest of the week, and more Percocet and its effect for the same amount of time.
At the same time, my blood counts were starting to drop. This meant that I was running low on platelets and red blood, and would soon need a transfusion of one or the other or both. I had to get my blood taken and checked every other day, while I was already in pain and practically unaware of my surroundings. I was scheduled for a CT scan and MIBG injection yesterday at CHOP, and an MIBG scan today. Instead, I went into CHOP on Tuesday for a platelet transfusion, which involves me getting premedicated with Tylenol and Benadryl and being knocked out by the Benadryl for the rest of the day. More fuzzyheadedness. I can't seem to escape it. I had to cancel the CT scan because of the pain of sores I still have. I got the MIBG scan today.
The good news is that the MIBG scan showed slightly better results than even the last time, which means that at least the chemo has done something, even if it is slight. Plus, my doctor is going to change my dosage so that I receive less, and hopefully this will help alleviate the "euphoria" and pain. The bad news is, my counts are still low and I have to be careful because I'm at risk for infection. Plus, I have to restart the chemo on Monday.
All in all, it hasn't been a great two weeks, and this week isn't shaping up to be the best one either. I'm really looking foward to Thanksgiving though; I can't wait to see my friends again and just have something normal return to my life. I need something happy. I only hope that I can manage to stay well and that the lower dose of chemo works to prevent me from staying loopy for 24 hours a day. I need to believe right now that I will be okay, that things will work out, and that I will be able to see my friends for Thanksgiving. It's what keeps me going.
Sunday, November 8, 2009
I am content.
I can say this truly and honestly, even with all of the problems I have in my life.
But being content has very little to do with your circumstances and everything to do with your attitude and the choices you make.
I am content because I choose to be.
Sometimes you're suddenly struck with an epiphany and you will forever remember your lesson. But most of the time you have to consciously remind yourself to follow what you know to be right. We have to remind ourselves to be polite, or to not be too hard on ourselves, or that winning isn't everything/the world is not a competition, and on and on.
This is something I have to do to be content and, even more than that, to be happy.
I have to remind myself how much better life feels when I'm happy, and remind myself that I always have a choice. I can choose to be happy, or I can choose to be sad or angry. While sometimes you may feel like you'd be happier getting upset or mopey, you'll remember that you're really just trying to be happy. If you're not convinced, think about which option you'd choose if you were feeling fine. Even just thinking of being happy can influence your mood for the positive.
I can say this truly and honestly, even with all of the problems I have in my life.
But being content has very little to do with your circumstances and everything to do with your attitude and the choices you make.
I am content because I choose to be.
Sometimes you're suddenly struck with an epiphany and you will forever remember your lesson. But most of the time you have to consciously remind yourself to follow what you know to be right. We have to remind ourselves to be polite, or to not be too hard on ourselves, or that winning isn't everything/the world is not a competition, and on and on.
This is something I have to do to be content and, even more than that, to be happy.
I have to remind myself how much better life feels when I'm happy, and remind myself that I always have a choice. I can choose to be happy, or I can choose to be sad or angry. While sometimes you may feel like you'd be happier getting upset or mopey, you'll remember that you're really just trying to be happy. If you're not convinced, think about which option you'd choose if you were feeling fine. Even just thinking of being happy can influence your mood for the positive.
Haze
When I have the chance to say something, I take it. Even when I'm not sure what I'm saying.
It's dangerous.
But sometimes it's helpful.
I don't know if it's better for me, or for others, or for no one at all. Maybe I shouldn't say anything.
I know I'm in a haze. But I don't realize how much until after I've already made a mistake.
Chemo brain.
Nonsense ramblings.
Or something?
I won't remember.
It's dangerous.
But sometimes it's helpful.
I don't know if it's better for me, or for others, or for no one at all. Maybe I shouldn't say anything.
I know I'm in a haze. But I don't realize how much until after I've already made a mistake.
Chemo brain.
Nonsense ramblings.
Or something?
I won't remember.
Wednesday, November 4, 2009
My brain swims.
I watch it go, from somewhere close, but far, far away.
My arms are limp.
My head is weighted down.
How can I be loose and so, so heavy?
How can I be on the other side of the room when I can't move from the couch?
I can't trust my eyes.
I know I have two brothers, but do I have two Moms, or two Dads? Or two lives?
Why is everything double?
Which one is real?
If I reach out my hand...
Use what little strength I have left to stretch my arm...
Can I grab the truth?
Or would it not be worth the effort?
I watch it go, from somewhere close, but far, far away.
My arms are limp.
My head is weighted down.
How can I be loose and so, so heavy?
How can I be on the other side of the room when I can't move from the couch?
I can't trust my eyes.
I know I have two brothers, but do I have two Moms, or two Dads? Or two lives?
Why is everything double?
Which one is real?
If I reach out my hand...
Use what little strength I have left to stretch my arm...
Can I grab the truth?
Or would it not be worth the effort?
Tuesday, November 3, 2009
Chemo in a Pill (or 4)
Yesterday morning I went back to CHOP to begin a new chemo treatment. Even though the radioactive treatment I received has worked even better than my doctors hoped it would, there is still cancer in my body. It may be the smallest it's been yet, but it's still there, and the doctors hope that by treating it now, we can keep it small and relatively un-harmful, or maybe possibly even shrink it more. While the ultimate hope for any treatment is to shrink the cancer so much as to make it disappear completely, things have always been different for me. That dream is always there, but it's a far, distant dream. The most we usually let ourselves hope for is to keep it small and treat it as a chronic disease; and for the most part, that's what we do.
This new chemotherapy I just started yesterday is part of a Phase II trial study, meaning they've already tested it on some people in Phase I - but not very many. Trial studies are always tricky; they are the most recent breakthroughs in modern medicine, but they're untested. Doctors aren't yet sure of dosages, reactions, or long-term effects. But when you've exhausted all other options, you go to the studies. I've already tried a few different trial studies.
Phase II means that they have a general idea of side effects and the best dosage. Phase II is better to be on than Phase I if you can afford to wait a bit. In the past, I couldn't, so I have been on Phase Is before. Phase II practically seems like a luxury now.
I took my first dose of this new chemo yesterday at about 1:15 pm. The dosage is 4 pills, each a little larger than an average Tylenol capsule. This worried me; I have never been good at taking medication orally, and swallowing pills wasn't even possible until I went to my miracle-worker/acupuncturist more than a year ago. She's done many things I thought were impossible, so it didn't completely surprise me when, after the careful application of a few needles, she was able to get me to be able to swallow pills. Still, I feel more comfortable with smaller pills, so the size of these pills worried me - and they wanted me to take 4 a day? I was nervous. Even my mom looked worried. But, I shouldn't have doubted the abilities of my acupuncturist. My throat was wide enough to get those pills down, one at a time.
Now all I had to worry about was the side effects. As this chemo is truly like the other chemotherapies I've had to have, I would have to be ready for hair loss and blood count drops. For some reason, though, nausea isn't something I have to worry about too much. Thank goodness for small miracles. However, there was one other side effect that many of the patients had to deal with: "euphoria". I couldn't tell whether or not I wanted this side effect! It sounded like an okay one to me! My mom jokingly asked my doctor, "Can I get those for my sons too? It would be nice to have 3 happy teenagers in my house for once! And maybe some for me too?" As it turns out, this chemo is "related" to the medicines Ativan and Valium, which both can be taken as anti-anxiety medications that mellow you out. For some people taking this chemo, they would experience a feeling similar to that of overdosing on Ativan or Valium and feeling really, really loose and "drunk-happy", and it would happen 2-3 hours after taking the pills.
3 hours later, I'm sitting on my couch back at home, and I start to realize that my head is feeling light and my brain isn't focusing on anything much at all. It takes a couple tries for me to reply to questions when asked and, although I don't feel elated or even happy, exactly, I don't feel bad either. I just feel very loose and loopy. It was an extreme chemo brain.
So now, tonight, I'll take my chemo right before I go to bed, so that I can hopefully sleep through my period of mush-brain.
Oh, and I'm pretty much banned from driving for the week.
This new chemotherapy I just started yesterday is part of a Phase II trial study, meaning they've already tested it on some people in Phase I - but not very many. Trial studies are always tricky; they are the most recent breakthroughs in modern medicine, but they're untested. Doctors aren't yet sure of dosages, reactions, or long-term effects. But when you've exhausted all other options, you go to the studies. I've already tried a few different trial studies.
Phase II means that they have a general idea of side effects and the best dosage. Phase II is better to be on than Phase I if you can afford to wait a bit. In the past, I couldn't, so I have been on Phase Is before. Phase II practically seems like a luxury now.
I took my first dose of this new chemo yesterday at about 1:15 pm. The dosage is 4 pills, each a little larger than an average Tylenol capsule. This worried me; I have never been good at taking medication orally, and swallowing pills wasn't even possible until I went to my miracle-worker/acupuncturist more than a year ago. She's done many things I thought were impossible, so it didn't completely surprise me when, after the careful application of a few needles, she was able to get me to be able to swallow pills. Still, I feel more comfortable with smaller pills, so the size of these pills worried me - and they wanted me to take 4 a day? I was nervous. Even my mom looked worried. But, I shouldn't have doubted the abilities of my acupuncturist. My throat was wide enough to get those pills down, one at a time.
Now all I had to worry about was the side effects. As this chemo is truly like the other chemotherapies I've had to have, I would have to be ready for hair loss and blood count drops. For some reason, though, nausea isn't something I have to worry about too much. Thank goodness for small miracles. However, there was one other side effect that many of the patients had to deal with: "euphoria". I couldn't tell whether or not I wanted this side effect! It sounded like an okay one to me! My mom jokingly asked my doctor, "Can I get those for my sons too? It would be nice to have 3 happy teenagers in my house for once! And maybe some for me too?" As it turns out, this chemo is "related" to the medicines Ativan and Valium, which both can be taken as anti-anxiety medications that mellow you out. For some people taking this chemo, they would experience a feeling similar to that of overdosing on Ativan or Valium and feeling really, really loose and "drunk-happy", and it would happen 2-3 hours after taking the pills.
3 hours later, I'm sitting on my couch back at home, and I start to realize that my head is feeling light and my brain isn't focusing on anything much at all. It takes a couple tries for me to reply to questions when asked and, although I don't feel elated or even happy, exactly, I don't feel bad either. I just feel very loose and loopy. It was an extreme chemo brain.
So now, tonight, I'll take my chemo right before I go to bed, so that I can hopefully sleep through my period of mush-brain.
Oh, and I'm pretty much banned from driving for the week.
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