I've just passed the halfway mark with my treatments (5 chemos down, 3 to go!). Had a full CT scan last week, which showed that the cancer has not spread and the tumor has shrunk from 8.5 cm to 4.7 cm. To be honest, I was secretly hoping that the doctor would pronounce that a miracle had occurred and that I could stop treatment immediately (or at least use the word "impressive" the way he did after Round 1), so I was just a teensy little bit disappointed. But he said the progress was just as expected and told me to "keep up the good work".
I'm also a little worried that less than half the tumor is gone. I feel as though maybe I could have made up that .2 cm difference by eating less sugar and eating more leafy green vegetables. Looking back on the past few months, I remember cheating quite a bit -- with decadent chocolate cake at L'Angoletto's and garlic ice cream at the Garlic Queen and hot chocolate with real whipped cream and even a shot of sweet liquor in Nijmegen, not to mention many many bars of dark chocolate and sweetened drinks.
The majority of my friends advise me to not deprive myself: it's bad enough that I have cancer. I should try to at least indulge in small pleasures. But in the back of mind there is that nagging thought that this is only a few months of my life. If I can get rid of all the cancer cells via more discipline, then I can enjoy myself later. I really want to avoid radiation therapy if I can. If eliminating sugar from my diet will help me do that, then I should be willing to do that for just 3 more months.
Monday, June 29, 2009
Eureka!
Finally...a drug combo that works! I spent the first day and night after chemo sleeping, but that's way better than heaving over a bucket in the bathroom!
So my new daily medication routine is this:
Every morning, Days 1-2: 1 scoop glutamine (amino acid to prevent neuropathy and help maintain good gut health) mixed in soy milk, 5 pills predinsone (part of the chemo treatment), 1 pill Granisetron (Kytril, for nausea), 1/2 pill Lorazepan (Ativan, for nausea and anxiety), 1 pill Aprepitan (Emend, for nausea), 1 Vitamin D supplement (for good general treatment outcomes), 1 Magnesium Hydrochloride tablet (for constipation) crushed into my cereal milk.
Every morning, Days 3-5: same as Days 1-2 but no Emend, and Kytril and Ativan only as needed
Every morning, Days 6-10: same as Days 3-5 but no prednisone and Ativan only as needed
Every morning, Days 10-22: same as Days 6-10 but no Ativan
Every evening: 3 mg melatonin (for reflux)
Also, as needed: ginger tea, crystallized ginger, hot water bottle (an experiment, seems to help soothe my stomach), propping my bed horizontally
I'm still suffering from almost continuous reflux, which is contributory to nausea but not the same thing. I'd like to know more about upright GERD, as the symptoms seem to be worse first thing in the morning when I get out of bed. It's weird because I would have thought that my stomach would be empty by then. But I always burp a few times and experience reflux anyway.
So my new daily medication routine is this:
Every morning, Days 1-2: 1 scoop glutamine (amino acid to prevent neuropathy and help maintain good gut health) mixed in soy milk, 5 pills predinsone (part of the chemo treatment), 1 pill Granisetron (Kytril, for nausea), 1/2 pill Lorazepan (Ativan, for nausea and anxiety), 1 pill Aprepitan (Emend, for nausea), 1 Vitamin D supplement (for good general treatment outcomes), 1 Magnesium Hydrochloride tablet (for constipation) crushed into my cereal milk.
Every morning, Days 3-5: same as Days 1-2 but no Emend, and Kytril and Ativan only as needed
Every morning, Days 6-10: same as Days 3-5 but no prednisone and Ativan only as needed
Every morning, Days 10-22: same as Days 6-10 but no Ativan
Every evening: 3 mg melatonin (for reflux)
Also, as needed: ginger tea, crystallized ginger, hot water bottle (an experiment, seems to help soothe my stomach), propping my bed horizontally
I'm still suffering from almost continuous reflux, which is contributory to nausea but not the same thing. I'd like to know more about upright GERD, as the symptoms seem to be worse first thing in the morning when I get out of bed. It's weird because I would have thought that my stomach would be empty by then. But I always burp a few times and experience reflux anyway.
Tuesday, June 23, 2009
Supplements
A friend who survived breast cancer recommended taking glutamine preventively for neuropathy. It seems like it could also work for alleviating my digestive issues, which are persisting now through this cycle (Cycle 4) mostly in the form of burping and reflux. http://en.wikipedia.org/wiki/Glutamine. Surprisingly, this wiki article didn't even mention neuropathy. But maybe I'll end up with muscles like Linda Hamilton in Terminator 2, since it's used by bodybuilders to build muscle. And I'll be chuffed if it helps with my memory, since I've had problems with memory all my life.
My nutritionist friend told me that melatonin might help generally against garden-variety reflux and might even have some effect against cancer: http://en.wikipedia.org/wiki/Melatonin. I take 3 mg now before I sleep. It's super-easy to take. The pills are tiny and they melt under my tongue.
I also went to an acupuncturist. She poked some needles in my stomach, gave me 3 bags of round pellets that resemble cat food, and charged me 89 euros. I'm supposed to take 13 pellets at each meal. They are very hard to swallow, and keep getting stuck in my windpipe. I was only able to stick to this for one day; then I lost interest in complying, especially as I didn't notice any dramatic difference in my stomach problems. The acupuncturist also told me that I have a 'cold' disorder, which means that I should only eat hot foods and drink hot drinks. Also, she thinks that I don't ingest enough protein or iron.
The last new treatment add-on is an ayurvedic masseuse. She comes to my apartment once a week and charges about 35 euros for the hour. She doesn't claim that she can do anything about my cancer or side effects, but it's a good way to relax and even meditate a bit.
My nutritionist friend told me that melatonin might help generally against garden-variety reflux and might even have some effect against cancer: http://en.wikipedia.org/wiki/Melatonin. I take 3 mg now before I sleep. It's super-easy to take. The pills are tiny and they melt under my tongue.
I also went to an acupuncturist. She poked some needles in my stomach, gave me 3 bags of round pellets that resemble cat food, and charged me 89 euros. I'm supposed to take 13 pellets at each meal. They are very hard to swallow, and keep getting stuck in my windpipe. I was only able to stick to this for one day; then I lost interest in complying, especially as I didn't notice any dramatic difference in my stomach problems. The acupuncturist also told me that I have a 'cold' disorder, which means that I should only eat hot foods and drink hot drinks. Also, she thinks that I don't ingest enough protein or iron.
The last new treatment add-on is an ayurvedic masseuse. She comes to my apartment once a week and charges about 35 euros for the hour. She doesn't claim that she can do anything about my cancer or side effects, but it's a good way to relax and even meditate a bit.
Monday, June 8, 2009
Wallowing
Today I have this unstoppable need to wallow in my misery. I feel like crap. I can't figure out how to escape this nausea. I worked this morning, because I knew that if I lay down and tried to rest, I would just feel more nauseous. But work was just a series of crises. Everyone is stressed. One person is on vacation. One person just came back from vacation. Things broke down over the weekend. Things are urgently due today that relied on the things that broke down over the weekend. So on top of the nausea, I started to feel anxious. And in the end, I just FUCK IT. I dumped it all on my poor colleague. I said I'd check back in later.
I've always been relatively optimistic. Mostly during this whole ordeal, I've been still there for my friends for their problems. Still doing most of things I like to do. I've been careful to not make any promises I can't keep, and I've been mostly successful in keeping the promises I've made. I feel as though I've been handling it all more or less gracefully.
But today...today...I just have this feeling that I can't take much more of this. Maybe a part of me knew all along this day might come. Which is why I never distributed this blog address to my friends and family. Especially because so many of them are overseas, I think they would only feel helpless when confronted with the negative feelings that are bound to surface from time to time. For them, I try to stay positive in my emails. But for my own sanity, once in a while, I really need to vent my frustrations and my fears.
At this moment, my biggest fear is that I won't be able to go on. It was just during this cycle that I started to have anticipatory nausea. I have about an inch of all-bran cereal left in my cereal box -- a cereal that I used to love. But every time I take it out to finish it off, I am overwhelmed by nausea. The smell of that bran reminds me too much of the brown bagel I ate on my first day of chemo this cycle -- the one that I threw up a few hours later. I had to look away from the carry bag I brought to the chemo room when I yanked out my laptop cable. Even writing about this is starting to make me anxious and nauseous.
I don't feel at all supported by my doctor in this battle. He's happy that the chemo drugs are working; I'm certain that my next full CT scan will show a big improvement. And I should be happy about it too. But instead, I'm having fantasies about not showing up for my 5th chemo treatment. I want to buy a ticket to the French riviera instead. I want to sit on a beach drinking Kir Royal and watching surfers roll in on the waves.
I've always been relatively optimistic. Mostly during this whole ordeal, I've been still there for my friends for their problems. Still doing most of things I like to do. I've been careful to not make any promises I can't keep, and I've been mostly successful in keeping the promises I've made. I feel as though I've been handling it all more or less gracefully.
But today...today...I just have this feeling that I can't take much more of this. Maybe a part of me knew all along this day might come. Which is why I never distributed this blog address to my friends and family. Especially because so many of them are overseas, I think they would only feel helpless when confronted with the negative feelings that are bound to surface from time to time. For them, I try to stay positive in my emails. But for my own sanity, once in a while, I really need to vent my frustrations and my fears.
At this moment, my biggest fear is that I won't be able to go on. It was just during this cycle that I started to have anticipatory nausea. I have about an inch of all-bran cereal left in my cereal box -- a cereal that I used to love. But every time I take it out to finish it off, I am overwhelmed by nausea. The smell of that bran reminds me too much of the brown bagel I ate on my first day of chemo this cycle -- the one that I threw up a few hours later. I had to look away from the carry bag I brought to the chemo room when I yanked out my laptop cable. Even writing about this is starting to make me anxious and nauseous.
I don't feel at all supported by my doctor in this battle. He's happy that the chemo drugs are working; I'm certain that my next full CT scan will show a big improvement. And I should be happy about it too. But instead, I'm having fantasies about not showing up for my 5th chemo treatment. I want to buy a ticket to the French riviera instead. I want to sit on a beach drinking Kir Royal and watching surfers roll in on the waves.
Sunday, June 7, 2009
New Things to Try for GERD
Well, I've tried the doctor's ways. Two different kinds of PPIs + metoclopramide, both of which didn't help the nausea and had horrible side effects. I'm still taking the kytril, even though I'm not sure it does anything at all.
Still more research on the net this morning. I think I've probably spent more than 20 hours so far reading up on GERD. Mostly the stories are heartbreaking. There are people who've suffered from GERD for more than 10 years, people who vomit after every meal, people who've had surgery without any relief, people who can't enjoy food at all, people who can't sleep, people who have constant pain and coughing. And it sounds like they've tried everything.
I was almost going to give into this GERD thing, just accept that I'm going to be vomiting occasionally and burping constantly 'til the end of treatment. But reading these accounts has made me even more determined that I have to do something about this right now, before it becomes a chronic condition. It's also made me realize that drugs, even if if they helped in the short-term, are not a long-term solution. The internet is rife with accounts of people who were on PPIs for a while and then they eventually stopped working.
There were a few new treatments I read about. They seemed mostly targeted at relieving heartburn, but I might try them anyway: slippery elm, aloe vera juice, acupuncture, dried papaya spears, chewing non-mint-flavored gum, abdominal exercise to strengthen muscles. I also really need to figure out how to sleep more vertically. I don't have the kind of bed where the head can be raised, and my GERD is not so bad that I'm willing to buy one. But I can add more pillows than the two I'm already using.
The list of foods to avoid are numerous. The ones that will be the hardest for me to give up are chocolate, onions, caffeine, garlic, black pepper.
I also did some reading on the mechanism behind GERD, because no one seems to be able explain how chemotherapy can cause GERD. Not my doctors, not any of the articles I've read so far on the internet. In general, it sounds like it is either caused by the weakening of the esophagal sphincter muscle. However, I also read, interestingly, that normal people may experience as much reflux as GERD patients, but that there is less acid and the level of reflux is generally lower. And this might be mitigated by swallowing and saliva. During chemo, I definitely have noticed that I'm less prone to generating saliva. Dry mouth is a common symptom, I think because the chemo drugs attack the rapidly-dividing mucosa cells of the mouth. I'm also less prone to swallowing, because my saliva tastes so strange to me. Maybe this is the root cause of the GERD.
I have yet to read a satisfying explanation of why some people burp more because of chemo and how burping is related to GERD.
Still more research on the net this morning. I think I've probably spent more than 20 hours so far reading up on GERD. Mostly the stories are heartbreaking. There are people who've suffered from GERD for more than 10 years, people who vomit after every meal, people who've had surgery without any relief, people who can't enjoy food at all, people who can't sleep, people who have constant pain and coughing. And it sounds like they've tried everything.
I was almost going to give into this GERD thing, just accept that I'm going to be vomiting occasionally and burping constantly 'til the end of treatment. But reading these accounts has made me even more determined that I have to do something about this right now, before it becomes a chronic condition. It's also made me realize that drugs, even if if they helped in the short-term, are not a long-term solution. The internet is rife with accounts of people who were on PPIs for a while and then they eventually stopped working.
There were a few new treatments I read about. They seemed mostly targeted at relieving heartburn, but I might try them anyway: slippery elm, aloe vera juice, acupuncture, dried papaya spears, chewing non-mint-flavored gum, abdominal exercise to strengthen muscles. I also really need to figure out how to sleep more vertically. I don't have the kind of bed where the head can be raised, and my GERD is not so bad that I'm willing to buy one. But I can add more pillows than the two I'm already using.
The list of foods to avoid are numerous. The ones that will be the hardest for me to give up are chocolate, onions, caffeine, garlic, black pepper.
I also did some reading on the mechanism behind GERD, because no one seems to be able explain how chemotherapy can cause GERD. Not my doctors, not any of the articles I've read so far on the internet. In general, it sounds like it is either caused by the weakening of the esophagal sphincter muscle. However, I also read, interestingly, that normal people may experience as much reflux as GERD patients, but that there is less acid and the level of reflux is generally lower. And this might be mitigated by swallowing and saliva. During chemo, I definitely have noticed that I'm less prone to generating saliva. Dry mouth is a common symptom, I think because the chemo drugs attack the rapidly-dividing mucosa cells of the mouth. I'm also less prone to swallowing, because my saliva tastes so strange to me. Maybe this is the root cause of the GERD.
I have yet to read a satisfying explanation of why some people burp more because of chemo and how burping is related to GERD.
Saturday, June 6, 2009
Chemo 4, Day 2
So...I am officially past the halfway mark. 4 chemos down, baby.
The bad news is that my latest concoction of meds, Nexium + Kytril + Metoclopramide, which I took 1 hour before my chemo, didn't seem to do a damned thing for me. I still vomited right on schedule. Well, even earlier in fact. And then again a few hours later. And I got bonus hits of drowsiness from the metoclopramide and heart palpitations from the Nexium on top of it all. As I was gasping over my now faithful old friend Bucket, which I had propped on the sink this time, a position that feels better than any I'd tried earlier, I was thinking about how the Eskimos purportedly have over a hundred words for snow. And I was wondering whether if I do this enough, I'll have multiple words for vomiting.
This round of vomiting felt different from the earlier rounds, probably due to the GERD. I was sort of belch-vomiting. It was noise-accompanied by the kind of belching that guys do to out-belch each other at the dinner table. Hilarious. I've never been able to belch on purpose. And here I was belching and upchucking at the same time. Holland's Got Talent!
The contents of my vomit were rather uninteresting this time. A puddle of murky brown goop. Brown bagel plus hummus. I will go for a more colorful mix in Round #5. If I'm going to throw up no matter what I do, I'm going for broke. Tuna fish sandwiches, spicy hot Thai food, cheese pizza. That bagel plus hummus tasted awful. The Dutch do not know how to make a good brown bagel.
Today, when I woke up, I decided to forgo the Nexium and metoclopramide. Back to square one with Kytril alone. The morning was a bit rough. My predinisone pills were hard to swallow, and I forced down some cereal because I know I didn't get a single bite yesterday that I didn't eject back out.
The Uglies saved me. Yes, the Uglies. This great book by Scott Westerfeld, written for teenagers, about a utopian/dystopian world where normal people are considered ugly until they turn 16 and then get operations to become pretty. Besides all the interesting social, political, philosophical, ethical implications of this way of preventing war and inequality, I loved the high-tech gadgets Scott invented for the book, especially the hyperboards, which you can ride around trees and over whitewater rapids. Scott must be a snowboarder!
Anyway, I spent most of last night reading the book in between vomits and finished up the book in the morning after breakfast. By noon, I started to feel better, though after I finished the Uglies, I decided to pop Cloverfield into the DVD player. That might have been a small mistake. Not as bad as watching Sweeney Todd on Day 2, but almost. Cloverfield is about an attack on NYC by a giant monster, but the entire movie is filmed with a hand-held camera. As you can imagine, because it's an action/monster movie, there's a fair amount of blood. The camera is constantly shaking and being dropped. Even if I wasn't nauseous at the start of the movie, I would have been at the end. But nevertheless, I made it through to the end, by periodically looking away from the TV and finding a fixed steady point above my couch. I love sci-fi action films!
Today turned out to be a movie marathon day. On Thursday night, I had managed to cycle to the public library and hauled off 6 movies. It was a real bonanza. Usually, I am lucky to find one movie there I really want to see. After Cloverfield, I watched Ellen Degeneres Live. She's fantastic. And laughter is, after all, the best medicine. Next was Sicko, which was fascinating, revealing, and heartbreaking at the same time. My favorite Michael Moore film so far. And of course, bound to churn up all sorts of thoughts about my own predicament. On the one hand, I'm so lucky that this happened to me overseas in Amsterdam. On the other hand, I want to move back to the U.S. and watching this movie made me realize that I might be trapped here. My only way back would be to find a job at a large enough company where group health is offered, and then NOT LOSE THAT JOB. The bit at the end, when you realized that even Cuba offers far better health care to its citizens (and in the movie, five of ours!) than the U.S. free of charge, was the most affecting. I had to cry when I saw how grateful the heroes of 9-11 were to finally be heard and not have to fight the stupid health insurers anymore. I can't believe how messed up things are in America these days.
I followed up with Corpse Bride, a fun movie. And now, I'll finish up with either Tropic Thunder or In Bruges. Probably the former, as I hear that there's at least one scene in In Bruges that's incredibly disturbing to watch. Movie time...
The bad news is that my latest concoction of meds, Nexium + Kytril + Metoclopramide, which I took 1 hour before my chemo, didn't seem to do a damned thing for me. I still vomited right on schedule. Well, even earlier in fact. And then again a few hours later. And I got bonus hits of drowsiness from the metoclopramide and heart palpitations from the Nexium on top of it all. As I was gasping over my now faithful old friend Bucket, which I had propped on the sink this time, a position that feels better than any I'd tried earlier, I was thinking about how the Eskimos purportedly have over a hundred words for snow. And I was wondering whether if I do this enough, I'll have multiple words for vomiting.
This round of vomiting felt different from the earlier rounds, probably due to the GERD. I was sort of belch-vomiting. It was noise-accompanied by the kind of belching that guys do to out-belch each other at the dinner table. Hilarious. I've never been able to belch on purpose. And here I was belching and upchucking at the same time. Holland's Got Talent!
The contents of my vomit were rather uninteresting this time. A puddle of murky brown goop. Brown bagel plus hummus. I will go for a more colorful mix in Round #5. If I'm going to throw up no matter what I do, I'm going for broke. Tuna fish sandwiches, spicy hot Thai food, cheese pizza. That bagel plus hummus tasted awful. The Dutch do not know how to make a good brown bagel.
Today, when I woke up, I decided to forgo the Nexium and metoclopramide. Back to square one with Kytril alone. The morning was a bit rough. My predinisone pills were hard to swallow, and I forced down some cereal because I know I didn't get a single bite yesterday that I didn't eject back out.
The Uglies saved me. Yes, the Uglies. This great book by Scott Westerfeld, written for teenagers, about a utopian/dystopian world where normal people are considered ugly until they turn 16 and then get operations to become pretty. Besides all the interesting social, political, philosophical, ethical implications of this way of preventing war and inequality, I loved the high-tech gadgets Scott invented for the book, especially the hyperboards, which you can ride around trees and over whitewater rapids. Scott must be a snowboarder!
Anyway, I spent most of last night reading the book in between vomits and finished up the book in the morning after breakfast. By noon, I started to feel better, though after I finished the Uglies, I decided to pop Cloverfield into the DVD player. That might have been a small mistake. Not as bad as watching Sweeney Todd on Day 2, but almost. Cloverfield is about an attack on NYC by a giant monster, but the entire movie is filmed with a hand-held camera. As you can imagine, because it's an action/monster movie, there's a fair amount of blood. The camera is constantly shaking and being dropped. Even if I wasn't nauseous at the start of the movie, I would have been at the end. But nevertheless, I made it through to the end, by periodically looking away from the TV and finding a fixed steady point above my couch. I love sci-fi action films!
Today turned out to be a movie marathon day. On Thursday night, I had managed to cycle to the public library and hauled off 6 movies. It was a real bonanza. Usually, I am lucky to find one movie there I really want to see. After Cloverfield, I watched Ellen Degeneres Live. She's fantastic. And laughter is, after all, the best medicine. Next was Sicko, which was fascinating, revealing, and heartbreaking at the same time. My favorite Michael Moore film so far. And of course, bound to churn up all sorts of thoughts about my own predicament. On the one hand, I'm so lucky that this happened to me overseas in Amsterdam. On the other hand, I want to move back to the U.S. and watching this movie made me realize that I might be trapped here. My only way back would be to find a job at a large enough company where group health is offered, and then NOT LOSE THAT JOB. The bit at the end, when you realized that even Cuba offers far better health care to its citizens (and in the movie, five of ours!) than the U.S. free of charge, was the most affecting. I had to cry when I saw how grateful the heroes of 9-11 were to finally be heard and not have to fight the stupid health insurers anymore. I can't believe how messed up things are in America these days.
I followed up with Corpse Bride, a fun movie. And now, I'll finish up with either Tropic Thunder or In Bruges. Probably the former, as I hear that there's at least one scene in In Bruges that's incredibly disturbing to watch. Movie time...
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