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.
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