A fantastic downloadable NPR interview about cancer:
http://www.npr.org/templates/story/story.php?storyId=112563650
Some other good resources:
Cancer is Hilarious blog: http://cancerisnotfunny.blogspot.com/
Sunday, October 11, 2009
Thursday, October 8, 2009
The Email I Sent to My Friends on October 8
Dear Friends,
I just got my PET/CT scan results from the hospital -- and they were NEGATIVE!!! Which is, of course, really positive. ;-) That means that I don't require any further treatment. No more pills, no more nausea, and I'm finally allowed to leave Holland for a vacation! I just need to go back to the hospital every 3 months for a blood test to make sure that I stay in remission.
Thanks again to you all for the many ways you have shown your encouragement and support. The emails, the Skype chats, the gifts, and the visits were all very much appreciated. Because of these, I can truly say that there were at least as many high points during my treatment as there were low ones!
It's celebration time now, although with the bad cold I have at the moment, I might have to postpone doing anything fun until the weekend. You guys in the Bay Area, this is also a heads up that I've actually managed to arrange a visit back for the first 2 weeks of December. I've had the plane tickets for a while now, but I didn't want to announce my trip until I knew for sure that I wouldn't have to cancel it. I'll send out a separate email soon with some details.
Love,
Me
I just got my PET/CT scan results from the hospital -- and they were NEGATIVE!!! Which is, of course, really positive. ;-) That means that I don't require any further treatment. No more pills, no more nausea, and I'm finally allowed to leave Holland for a vacation! I just need to go back to the hospital every 3 months for a blood test to make sure that I stay in remission.
Thanks again to you all for the many ways you have shown your encouragement and support. The emails, the Skype chats, the gifts, and the visits were all very much appreciated. Because of these, I can truly say that there were at least as many high points during my treatment as there were low ones!
It's celebration time now, although with the bad cold I have at the moment, I might have to postpone doing anything fun until the weekend. You guys in the Bay Area, this is also a heads up that I've actually managed to arrange a visit back for the first 2 weeks of December. I've had the plane tickets for a while now, but I didn't want to announce my trip until I knew for sure that I wouldn't have to cancel it. I'll send out a separate email soon with some details.
Love,
Me
Monday, June 29, 2009
Over the Hump
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.
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.
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...
Monday, May 25, 2009
Fun Stuff I Am Doing During Chemo
It's not all just heaving over a beige plastic bucket, wishing that I wasn't retasting the shoarma I ate 5 hours ago.
Since April 3, Day 1 of Cycle 1 (D1C1), I:
- saw Ojos de Brujos at Paradiso (D5C1)
- had a drink at the AmstelHaven and then a tea at the Amstel Hotel (D8C1)
- went to an Chinese Hot Pot Dinner Party (D17C1)
- ate Dutch food with my mother and brother at Moeder's restaurant where, after 10 minutes of avid searching, we finally located the framed photo of my mother that we donated the last time she visited Amsterdam about a year ago (D20C1)
- walked all over town decked out in orange on Queen's Day (D7C2)
- danced during my friend Joel's Drum & Bass DJ set at Greenhouse Effect and then attempted to banter with very drunk Dutchmen at my first ever houseboat party (D7C2)
- went for a drive to Oude Kerk for a super-delicious brunch of chicken club sandwich and Dutch appeltaart with whipped cream, followed by a walk around Amsterdamse Bos (D10C2)
- attended a dinner cooked by my friend Sandrine, who is a fabulous French cook and hostess (D16C2)
- picnicked in Saphartipark, where alas -- a @#%&ing dog peed on my bicycle (D17C2)
- biked to the Hole in the Wall pub for a friend's birthday drinks, watched Yankee Come Home at Boom Chicago, and then went back to the pub to catch up on the results of 2009's Eurovision song contest (D2C3)
- saw one of the most amazing taiko drum groups in the world, Yamato, perform at the Carre (D4C3)
- drank a mint tea at the Blue Teahouse and then played ping pong at OT301 (D5C3)
- went to a barbeque and then played a Mario driving game on the Wii (D6C3)
- saw the always-educational-and-inspiring annual World Press Photo exhibit (D10C3)
- biked 45 minutes each way to see Star Trek in IMAX (D10C3)
Promisingly, I'm getting out of the apartment more with each cycle!
Also, I restarted my lapsed membership to the public library and have started biking there every weekend to borrow DVDs. So far, I've watched the whole first season of 30 Rock, Shortbus, Mamma Mia, Darjeeling Express, In Her Shoes, Step Up, and Fletch (again). This in addition to: The Changeling, Australia, Mystery Alaska, Legends of the Fall (again), and Finding Nemo (again).
I also tried meditation a few times, following a Gaiam DVD I borrowed from my friend Sarah.
Also thanks to Sarah, who's a voracious reader and shares my taste in books, I read the first two books of the Twilight Series, The Time Traveler's Wife, Water for Elephants, and a Short History of Tractors in Ukrainian.
Now I'm reading a Renate Dorrestein book in Dutch I bought on Queen's Day for 50 euro cents as well as Brilliant Orange: the Neurotic Genius of Dutch Football, which I bought using a gift certificate I got from my friend Marta for my birthday.
I've had four visitors from the States.
My mom brought me Wii Fit and got me hooked on sudokus. In return, I made her watch Tokyo Zombie, which is probably the only non-Oscar-nominated movie that my mom has ever watched. I think I got the better end of the deal.
My brother Eric somehow managed to stuff Wii Rock Band, which includes a drum set and guitar, into his suitcases and lug them over here from California. So I'm learning how to play the drums and guitar now, or at least distinguish primary colors from one another under pressure.
My friend Lois gave me a book called 'The Healing Power of Chocolate' and brought me dark-chocolate covered pistachios from Trader Joe's, which prompted a whole series of emails with my nutritionist friend and eventually resulted in my sampling different brands and formulations of dark chocolate on a regular basis (so far Toblerone is coming out ahead).
I'm proud to say that I introduced my brother Ed to the diabolical genius of Joss Whedon. We watched the entire season of Firefly while he was here. I also introduced him to moth.org and This American Life. We both learned how to play Odin's Ravens together, but he won easily. While I like board games more, he seems to be better at them; so unfair!
Looking back, I guess I managed to still do a lot during my first three chemo cycles. And the list didn't even include the approximately 30 hours a week I've been working from home! Not too bad for someone with a serious illness. Although I have to admit that I've had more mandatory free time than usual, due to the fact that most of the Dutch holidays come one after the other in April and May, instead of being spread out through the year. Besides Easter weekend and Queen's Day, we had two days off last week for Ascension Day. In a normal year, I'd be spending these long weekends traveling.
This coming weekend is Pinksteren weekend, and every single one of my friends will be out of town. In fact, most of them will be away on the same sailing trip visiting the islands in the north of Holland, a trip that I wanted to do but in the end I had to back out because, at the time that they were organizing the trip, there were too many uncertainties about how I would react to my chemo treatments. Trapped on a boat, there was too much risk that I could get an infection and not find my way to a hospital or that I would be already be horribly nauseous. So I'll have to entertain myself, which is not usually so hard to do.
These two days (Days 11 and 12) are usually the best days of my chemo cycle. I've been meaning to go to the supermarket for a few days, so I've been forced to get creative in the kitchen, without my usual stockpile of favorite foods. Then it was pouring rain all day, and I was getting obsessive about my current work project, so I thought maybe I would skip the trip again. But finally the sun came out, and in Holland these days it doesn't get dark until past 10pm, and happily I confirmed online that my nearest Albert Heijn would be open 'til 10. I was so excited in the supermarket about having fresh produce again, I was actually humming to myself, and I had to remind myself that I only live less than 5 minutes away by bike; there was no need to buy 15 different fruits and vegetables! As I was cycling home with my treasures, the thought popped into my head spontaneously that I am really so lucky and happy just to be alive. Every extra day that I'm on this earth is another chance to appreciate all the amazing things life has to offer, whether it's big or small. In the past 24 hours: my first taste of cherries this summer, thunder and rain drumming against my window while I snuggle into my warm bed, the view of the sun setting over the canals and old houses of Amsterdam, chatting with my neighbors, feeling the stretch of my limbs and the wind on my face as I biked.
Since April 3, Day 1 of Cycle 1 (D1C1), I:
- saw Ojos de Brujos at Paradiso (D5C1)
- had a drink at the AmstelHaven and then a tea at the Amstel Hotel (D8C1)
- went to an Chinese Hot Pot Dinner Party (D17C1)
- ate Dutch food with my mother and brother at Moeder's restaurant where, after 10 minutes of avid searching, we finally located the framed photo of my mother that we donated the last time she visited Amsterdam about a year ago (D20C1)
- walked all over town decked out in orange on Queen's Day (D7C2)
- danced during my friend Joel's Drum & Bass DJ set at Greenhouse Effect and then attempted to banter with very drunk Dutchmen at my first ever houseboat party (D7C2)
- went for a drive to Oude Kerk for a super-delicious brunch of chicken club sandwich and Dutch appeltaart with whipped cream, followed by a walk around Amsterdamse Bos (D10C2)
- attended a dinner cooked by my friend Sandrine, who is a fabulous French cook and hostess (D16C2)
- picnicked in Saphartipark, where alas -- a @#%&ing dog peed on my bicycle (D17C2)
- biked to the Hole in the Wall pub for a friend's birthday drinks, watched Yankee Come Home at Boom Chicago, and then went back to the pub to catch up on the results of 2009's Eurovision song contest (D2C3)
- saw one of the most amazing taiko drum groups in the world, Yamato, perform at the Carre (D4C3)
- drank a mint tea at the Blue Teahouse and then played ping pong at OT301 (D5C3)
- went to a barbeque and then played a Mario driving game on the Wii (D6C3)
- saw the always-educational-and-inspiring annual World Press Photo exhibit (D10C3)
- biked 45 minutes each way to see Star Trek in IMAX (D10C3)
Promisingly, I'm getting out of the apartment more with each cycle!
Also, I restarted my lapsed membership to the public library and have started biking there every weekend to borrow DVDs. So far, I've watched the whole first season of 30 Rock, Shortbus, Mamma Mia, Darjeeling Express, In Her Shoes, Step Up, and Fletch (again). This in addition to: The Changeling, Australia, Mystery Alaska, Legends of the Fall (again), and Finding Nemo (again).
I also tried meditation a few times, following a Gaiam DVD I borrowed from my friend Sarah.
Also thanks to Sarah, who's a voracious reader and shares my taste in books, I read the first two books of the Twilight Series, The Time Traveler's Wife, Water for Elephants, and a Short History of Tractors in Ukrainian.
Now I'm reading a Renate Dorrestein book in Dutch I bought on Queen's Day for 50 euro cents as well as Brilliant Orange: the Neurotic Genius of Dutch Football, which I bought using a gift certificate I got from my friend Marta for my birthday.
I've had four visitors from the States.
My mom brought me Wii Fit and got me hooked on sudokus. In return, I made her watch Tokyo Zombie, which is probably the only non-Oscar-nominated movie that my mom has ever watched. I think I got the better end of the deal.
My brother Eric somehow managed to stuff Wii Rock Band, which includes a drum set and guitar, into his suitcases and lug them over here from California. So I'm learning how to play the drums and guitar now, or at least distinguish primary colors from one another under pressure.
My friend Lois gave me a book called 'The Healing Power of Chocolate' and brought me dark-chocolate covered pistachios from Trader Joe's, which prompted a whole series of emails with my nutritionist friend and eventually resulted in my sampling different brands and formulations of dark chocolate on a regular basis (so far Toblerone is coming out ahead).
I'm proud to say that I introduced my brother Ed to the diabolical genius of Joss Whedon. We watched the entire season of Firefly while he was here. I also introduced him to moth.org and This American Life. We both learned how to play Odin's Ravens together, but he won easily. While I like board games more, he seems to be better at them; so unfair!
Looking back, I guess I managed to still do a lot during my first three chemo cycles. And the list didn't even include the approximately 30 hours a week I've been working from home! Not too bad for someone with a serious illness. Although I have to admit that I've had more mandatory free time than usual, due to the fact that most of the Dutch holidays come one after the other in April and May, instead of being spread out through the year. Besides Easter weekend and Queen's Day, we had two days off last week for Ascension Day. In a normal year, I'd be spending these long weekends traveling.
This coming weekend is Pinksteren weekend, and every single one of my friends will be out of town. In fact, most of them will be away on the same sailing trip visiting the islands in the north of Holland, a trip that I wanted to do but in the end I had to back out because, at the time that they were organizing the trip, there were too many uncertainties about how I would react to my chemo treatments. Trapped on a boat, there was too much risk that I could get an infection and not find my way to a hospital or that I would be already be horribly nauseous. So I'll have to entertain myself, which is not usually so hard to do.
These two days (Days 11 and 12) are usually the best days of my chemo cycle. I've been meaning to go to the supermarket for a few days, so I've been forced to get creative in the kitchen, without my usual stockpile of favorite foods. Then it was pouring rain all day, and I was getting obsessive about my current work project, so I thought maybe I would skip the trip again. But finally the sun came out, and in Holland these days it doesn't get dark until past 10pm, and happily I confirmed online that my nearest Albert Heijn would be open 'til 10. I was so excited in the supermarket about having fresh produce again, I was actually humming to myself, and I had to remind myself that I only live less than 5 minutes away by bike; there was no need to buy 15 different fruits and vegetables! As I was cycling home with my treasures, the thought popped into my head spontaneously that I am really so lucky and happy just to be alive. Every extra day that I'm on this earth is another chance to appreciate all the amazing things life has to offer, whether it's big or small. In the past 24 hours: my first taste of cherries this summer, thunder and rain drumming against my window while I snuggle into my warm bed, the view of the sun setting over the canals and old houses of Amsterdam, chatting with my neighbors, feeling the stretch of my limbs and the wind on my face as I biked.
Stephen Jay Gould, Marijuana, and Statistics are Not Destiny
I'd read some essays by Stephen Jay Gould when I was in college. I never knew he was a cancer survivor. This from Wikipedia:
"In July 1982, Gould was diagnosed with abdominal mesothelioma. He later published a column in Discover magazine, titled The Median Isn't the Message, in which he discusses his discovery that mesothelioma patients had only a median lifespan of eight months after diagnosis. He then describes the research he uncovered behind this number, and his relief upon the realization that statistics are not destiny. After his diagnosis and receiving an experimental treatment, Gould continued to live for nearly twenty years. His column became a source of comfort for many cancer patients."
"It was during his bout with abdominal mesothelioma that Gould became a user of marijuana to alleviate the nausea associated with his cancer treatments. Although Gould maintained, "I am something of a Puritan" with respect to any substances that would alter or dull his mental state—not drinking alcohol or using drugs in a recreational sense—he attributed value to the medicinal use of marijuana in helping him to face the painful side effects of his treatment and keep a more positive attitude (Grinspoon 1993). Ultimately, he recognized an important role to the maintenance of spirit through adversity, and that use of marijuana had an important effect on this aspect of his treatments, though he disliked the mental blurring."
"Stephen Jay Gould died May 20, 2002, from a metastatic adenocarcinoma of the lung (a form of lung cancer, which had spread to his brain). This cancer was completely unrelated to his abdominal mesothelioma, from which he had fully recovered almost twenty years earlier."
"In July 1982, Gould was diagnosed with abdominal mesothelioma. He later published a column in Discover magazine, titled The Median Isn't the Message, in which he discusses his discovery that mesothelioma patients had only a median lifespan of eight months after diagnosis. He then describes the research he uncovered behind this number, and his relief upon the realization that statistics are not destiny. After his diagnosis and receiving an experimental treatment, Gould continued to live for nearly twenty years. His column became a source of comfort for many cancer patients."
"It was during his bout with abdominal mesothelioma that Gould became a user of marijuana to alleviate the nausea associated with his cancer treatments. Although Gould maintained, "I am something of a Puritan" with respect to any substances that would alter or dull his mental state—not drinking alcohol or using drugs in a recreational sense—he attributed value to the medicinal use of marijuana in helping him to face the painful side effects of his treatment and keep a more positive attitude (Grinspoon 1993). Ultimately, he recognized an important role to the maintenance of spirit through adversity, and that use of marijuana had an important effect on this aspect of his treatments, though he disliked the mental blurring."
"Stephen Jay Gould died May 20, 2002, from a metastatic adenocarcinoma of the lung (a form of lung cancer, which had spread to his brain). This cancer was completely unrelated to his abdominal mesothelioma, from which he had fully recovered almost twenty years earlier."
Friday, May 22, 2009
Treatment Against Nausea
Here's the advice I've collected on the internet against GERD so far:
Avoid anything carbonated or effervescent. [Note: There is a lot of contradictory information out there about carbonation. My doctor recommended that I try original Coke. But both days that I actually drank a Coke (Day 1 and Day 7), I vomited. I've also been recommended to drink ginger ale and ginger beer for nausea.]
Eat bland food.
Avoid dairy products, sugar, fat, and spices.
Prop up the head of the bed 6 inches, or sleep in a recliner.
Cut HALF a banana, mash it, and eat it, chewing slowly.
Sip room temperature water to dilute the acid.
Wear loose-fitting clothes.
Avoid lying down for 3 hours after a meal.
Avoid citrus fruits such as oranges, lemons, grapefruits, tomatoes, and cranberries.
Avoid caffeine in all forms.
Don’t overeat.
Yesterday, I had eaten a late lunch of Dutch pancakes with bacon, apple, and syrup along with a Coca-Cola. We then biked to a cafe outside of town where I shared an apple pie with whipped cream and a Bitter Lemon. At dinner, I had a mango juice and shoarma smothered with a mix of garlic sauce, hot sauce, and mild salsa. At the bar afterwards, I had a bottle of cranberry juice.
In other words, I had broken almost every rule above and am now paying the price. When I came home, I felt awful. I vomited around 2am, and again around 4am, and didn't feel better even after that, though I had nothing left in my stomach to eject. I spent almost all day today collapsed on the couch marathoning 30 Rock episodes, it's almost midnight, and I still feel nauseous. I'm actually afraid to lie down.
I feel like I'm Bill Murray in Groundhog Day, doomed to repeat the same day again and again, until I figure out how to do it right. Now I am in Cycle 3 of 8 and I've figure out how to manage or eliminate constipation, mouth sores, neuropathy, and hair loss. But I'm still struggling with nausea and vomiting.
So far, I've tried all of the following, with no noticeable improvement and some uncomfortable side effects:
Granisetron (Kytril), only prescribed for the first 3 days and hasn't stopped me from vomiting on the first day of each cycle
Zantac (H2-receptor antagonist)
Maalox (antacid)
Pantecta (a PPI), strong side effect of heart palpitations
metoclopramide, strong side effect of dizziness and drowsiness
sativa marijuana, strong side effect of dizziness
original Coke
ginger beer
HCl Plus
My doctor thinks the problem is GERD. For a brief while, I thought the problem was not enough stomach acid. But now I'm wondering whether the problem is dyspepsia -- simple indigestion. I don't have heartburn and only once in a while do I taste stomach acid in my throat, but that's always due to burping. Burping is my biggest symptom and that seems to be caused primarily by excess gas in the stomach, not a weakness of the muscle that separates the stomach from the esophagus.
According to Wikipedia, clinical trials show that antacids and H2-receptor antagonists like Zantac have little to no effectiveness against dyspepsia when compared to placebo. Also very interestingly, metoclopramide, which my doctor prescribed, has also been shown to be ineffective.
The same Wiki article stated that a herbal remedy called Iberogast and PPIs have been proven to work. So next I'll try the Iberogast and ask my doctor to prescribe another PPI besides Pantecta.
* * * * * * * * * * * * * * * * * * *
UPDATE: well, I tried the Iberogast. A little bottle sells here for about 15 euros, and I'm supposed to take 20 drops three times a day. The taste is somewhat awful, and I didn't notice a difference after taking it once. I stopped taking it, because the burping has gotten somewhat more tolerable now that I'm on Day 11 of this cycle. I saw today that another blogger (Carrie's NHL Blog) wrote that nausea wasn't a big problem for her: "Zofran, Compazine and Ativan work great and, when I just need a little something, I take 500 mg – 1000 mg of ginger." So I plan to do some further investigation of this option before my next consult.
Avoid anything carbonated or effervescent. [Note: There is a lot of contradictory information out there about carbonation. My doctor recommended that I try original Coke. But both days that I actually drank a Coke (Day 1 and Day 7), I vomited. I've also been recommended to drink ginger ale and ginger beer for nausea.]
Eat bland food.
Avoid dairy products, sugar, fat, and spices.
Prop up the head of the bed 6 inches, or sleep in a recliner.
Cut HALF a banana, mash it, and eat it, chewing slowly.
Sip room temperature water to dilute the acid.
Wear loose-fitting clothes.
Avoid lying down for 3 hours after a meal.
Avoid citrus fruits such as oranges, lemons, grapefruits, tomatoes, and cranberries.
Avoid caffeine in all forms.
Don’t overeat.
Yesterday, I had eaten a late lunch of Dutch pancakes with bacon, apple, and syrup along with a Coca-Cola. We then biked to a cafe outside of town where I shared an apple pie with whipped cream and a Bitter Lemon. At dinner, I had a mango juice and shoarma smothered with a mix of garlic sauce, hot sauce, and mild salsa. At the bar afterwards, I had a bottle of cranberry juice.
In other words, I had broken almost every rule above and am now paying the price. When I came home, I felt awful. I vomited around 2am, and again around 4am, and didn't feel better even after that, though I had nothing left in my stomach to eject. I spent almost all day today collapsed on the couch marathoning 30 Rock episodes, it's almost midnight, and I still feel nauseous. I'm actually afraid to lie down.
I feel like I'm Bill Murray in Groundhog Day, doomed to repeat the same day again and again, until I figure out how to do it right. Now I am in Cycle 3 of 8 and I've figure out how to manage or eliminate constipation, mouth sores, neuropathy, and hair loss. But I'm still struggling with nausea and vomiting.
So far, I've tried all of the following, with no noticeable improvement and some uncomfortable side effects:
Granisetron (Kytril), only prescribed for the first 3 days and hasn't stopped me from vomiting on the first day of each cycle
Zantac (H2-receptor antagonist)
Maalox (antacid)
Pantecta (a PPI), strong side effect of heart palpitations
metoclopramide, strong side effect of dizziness and drowsiness
sativa marijuana, strong side effect of dizziness
original Coke
ginger beer
HCl Plus
My doctor thinks the problem is GERD. For a brief while, I thought the problem was not enough stomach acid. But now I'm wondering whether the problem is dyspepsia -- simple indigestion. I don't have heartburn and only once in a while do I taste stomach acid in my throat, but that's always due to burping. Burping is my biggest symptom and that seems to be caused primarily by excess gas in the stomach, not a weakness of the muscle that separates the stomach from the esophagus.
According to Wikipedia, clinical trials show that antacids and H2-receptor antagonists like Zantac have little to no effectiveness against dyspepsia when compared to placebo. Also very interestingly, metoclopramide, which my doctor prescribed, has also been shown to be ineffective.
The same Wiki article stated that a herbal remedy called Iberogast and PPIs have been proven to work. So next I'll try the Iberogast and ask my doctor to prescribe another PPI besides Pantecta.
* * * * * * * * * * * * * * * * * * *
UPDATE: well, I tried the Iberogast. A little bottle sells here for about 15 euros, and I'm supposed to take 20 drops three times a day. The taste is somewhat awful, and I didn't notice a difference after taking it once. I stopped taking it, because the burping has gotten somewhat more tolerable now that I'm on Day 11 of this cycle. I saw today that another blogger (Carrie's NHL Blog) wrote that nausea wasn't a big problem for her: "Zofran, Compazine and Ativan work great and, when I just need a little something, I take 500 mg – 1000 mg of ginger." So I plan to do some further investigation of this option before my next consult.
Day-by-Day Breakdown, Chemo Cycle III
Day 1: vomiting approximately 8 hours after leaving the hospital
Day 2: nausea in the morning, fatigue, slight cough, hyperactivity leading to sleeplessness (side effect of prednisolon), very slight neuropathy in my right thumb
Day 3: same as Day 2
Day 4: same as Day 2 plus extreme dizziness and drowsiness after taking metoclopramide in the morning
Day 5-6: same as Day 2 plus burping (note that the only anti-nausea meds I took on these days was Maalox)
Day 7: same as Day 2 plus heavy burping, vomited twice in the middle of the night (note that I made the mistake of eating shoarma with hot sauce and ran out of Maalox)
Day 8: same as Day 2 plus burping and nausea (took 2 Zantac pills)
Day 9: nausea, burping, fatigue, slight cough
Day 10: nausea, burping, fatigue
Day 11: burping
Day 12: burping
I really need to find a good solution for the nausea and burping!
Day 2: nausea in the morning, fatigue, slight cough, hyperactivity leading to sleeplessness (side effect of prednisolon), very slight neuropathy in my right thumb
Day 3: same as Day 2
Day 4: same as Day 2 plus extreme dizziness and drowsiness after taking metoclopramide in the morning
Day 5-6: same as Day 2 plus burping (note that the only anti-nausea meds I took on these days was Maalox)
Day 7: same as Day 2 plus heavy burping, vomited twice in the middle of the night (note that I made the mistake of eating shoarma with hot sauce and ran out of Maalox)
Day 8: same as Day 2 plus burping and nausea (took 2 Zantac pills)
Day 9: nausea, burping, fatigue, slight cough
Day 10: nausea, burping, fatigue
Day 11: burping
Day 12: burping
I really need to find a good solution for the nausea and burping!
Monday, May 11, 2009
Treatment Against Peripheral Neuropathy
Two weeks ago, I experienced a little bit of peripheral neuropathy (tingling in hands and feet, fingernails and toenails turning black). My right thumb seemed to suffer the worst and alternated throughout the days between numbness and tingling.
I read that it's best to address neuropathic symptoms as soon as they are noticed; otherwise, more serious side effects can develop. But there is not so much information available on the web on how exactly to go about tackling the problem.
Other survivors have highly recommended taking 10 grams of glutamine daily, acupuncture, and (to a far lesser extent) professional massage or acupressure. Unfortunately, alternative treatments are not covered by my insurance policy. In some ways, this is a relief for me, because then I'd have to mount a campaign to persuade my not-so-holistically inclined doctor to refer me to one of these specialists. I don't think I have the energy for that.
In the meantime, as this particular side effect is not too bad at the moment, I tried self-massaging my hands several times a day using a combination of techniques from these videos:
Self-Massage for Hands
Ten Step Hand Reflexology Self-Treatment
Note that the Expert Village series also includes self-massage for the neck, tired eyes, bottom of feet and heels, feet in high heels, after-meal relief, arms, back, and lower back. Also, if self-massage doesn't appeal, one website recommended asking a partner or friend to learn massage and have them perform it on you (one way to test whether they really mean what they say when they say: "let me know if there's anything I can do!"). I quite liked that idea, but the nice thing about self-massage is that I can do it every day, several times a day, whenever I want.
The hand self-massaging feels good (I do it almost subconsciously now, when I'm waiting in line at the pharmacy, for example), but didn't produce any noticeable reduction of my existing neuropathic symptoms.
But yesterday, I massaged my entire body using a powerful electric massager I bought years ago from Sharper Image, focusing on the palm of my hand and all around my thumb. This not only provided instant relief, but even hours later, my thumb neuropathy has virtually disappeared.
I've also noticed recently that if I wear warm mittens and socks to bed, I don't wake up with tingling in my feet or hands. It makes sense to me that the blood should circulate better if it's kept warm, so I might try wearing my mittens around the house as well.
It could be that the neuropathic symptoms are simply waning as more days pass after my last chemo treatment. I'll have to see whether these techniques will continue to work when I plunge into Chemo Round 3, which begins next Friday.
* * * * * * * * * * * *
UPDATE: now it's Day 8 of my third chemo cycle, and I have (so far) less neuropathy than I did during Cycle 2 at the same time point. I use my massager on both hands and arms whenever I feel tingling in my right thumb, so approximately 2-3 times a day. So far, I haven't developed neuropathy anywhere else.
I read that it's best to address neuropathic symptoms as soon as they are noticed; otherwise, more serious side effects can develop. But there is not so much information available on the web on how exactly to go about tackling the problem.
Other survivors have highly recommended taking 10 grams of glutamine daily, acupuncture, and (to a far lesser extent) professional massage or acupressure. Unfortunately, alternative treatments are not covered by my insurance policy. In some ways, this is a relief for me, because then I'd have to mount a campaign to persuade my not-so-holistically inclined doctor to refer me to one of these specialists. I don't think I have the energy for that.
In the meantime, as this particular side effect is not too bad at the moment, I tried self-massaging my hands several times a day using a combination of techniques from these videos:
Self-Massage for Hands
Ten Step Hand Reflexology Self-Treatment
Note that the Expert Village series also includes self-massage for the neck, tired eyes, bottom of feet and heels, feet in high heels, after-meal relief, arms, back, and lower back. Also, if self-massage doesn't appeal, one website recommended asking a partner or friend to learn massage and have them perform it on you (one way to test whether they really mean what they say when they say: "let me know if there's anything I can do!"). I quite liked that idea, but the nice thing about self-massage is that I can do it every day, several times a day, whenever I want.
The hand self-massaging feels good (I do it almost subconsciously now, when I'm waiting in line at the pharmacy, for example), but didn't produce any noticeable reduction of my existing neuropathic symptoms.
But yesterday, I massaged my entire body using a powerful electric massager I bought years ago from Sharper Image, focusing on the palm of my hand and all around my thumb. This not only provided instant relief, but even hours later, my thumb neuropathy has virtually disappeared.
I've also noticed recently that if I wear warm mittens and socks to bed, I don't wake up with tingling in my feet or hands. It makes sense to me that the blood should circulate better if it's kept warm, so I might try wearing my mittens around the house as well.
It could be that the neuropathic symptoms are simply waning as more days pass after my last chemo treatment. I'll have to see whether these techniques will continue to work when I plunge into Chemo Round 3, which begins next Friday.
* * * * * * * * * * * *
UPDATE: now it's Day 8 of my third chemo cycle, and I have (so far) less neuropathy than I did during Cycle 2 at the same time point. I use my massager on both hands and arms whenever I feel tingling in my right thumb, so approximately 2-3 times a day. So far, I haven't developed neuropathy anywhere else.
Treatment Against Cough
I've had this @#$%ing cold since the week of March 1.
I can't get rid of it, because every time it's about to go away, I enter into the phase of my chemo cycle where my white blood cell count heads south and then of course my cold viruses figure the parents are out of the house and it's time to PARTY!
As I figure that I'm going to end up with terrible cold symptoms every 3 weeks until September, I've been doing my best to alleviate the cough and congestion via these techinques, gathered primarily from web research:
1) alternating peppermint tea with a tea made from ginger, lemon, honey, and a couple of shakes of cayenne pepper
2) a few drops of eucalyptus oil in a steaming hot shower
3) wearing a hat, gloves, and socks around the apartment
4) dosing with Nyquil (though I'm going to switch to prescription codeine as soon as I can) at night so that I can quiet the cough enough to sleep
5) drinking liters of water and barley tea
* * * * * * * * * * * * * * * * * * *
UPDATE: it's now Day 10 of Cycle 3 -- no more cough!!! It's a miracle! I'm now just crossing my fingers that it won't come back on Day 13, which is when my cough usually got much worse during my first two cycles.
I can't get rid of it, because every time it's about to go away, I enter into the phase of my chemo cycle where my white blood cell count heads south and then of course my cold viruses figure the parents are out of the house and it's time to PARTY!
As I figure that I'm going to end up with terrible cold symptoms every 3 weeks until September, I've been doing my best to alleviate the cough and congestion via these techinques, gathered primarily from web research:
1) alternating peppermint tea with a tea made from ginger, lemon, honey, and a couple of shakes of cayenne pepper
2) a few drops of eucalyptus oil in a steaming hot shower
3) wearing a hat, gloves, and socks around the apartment
4) dosing with Nyquil (though I'm going to switch to prescription codeine as soon as I can) at night so that I can quiet the cough enough to sleep
5) drinking liters of water and barley tea
* * * * * * * * * * * * * * * * * * *
UPDATE: it's now Day 10 of Cycle 3 -- no more cough!!! It's a miracle! I'm now just crossing my fingers that it won't come back on Day 13, which is when my cough usually got much worse during my first two cycles.
Thursday, May 7, 2009
The Silver Linings
Despite the fact that I'm voluntarily streaming poison into my body every three weeks, in some ways, I feel healthier than I have in years. I have greatly improved my diet. I sleep more. I am less stressed because I have fewer urgent projects on my plate, and I don't have to go into the office.
I've learned a lot about my body and how to take care of it, that will be useful to me, and maybe also to my friends and family, after my treatment is finished.
I learned that I'm tougher and more disciplined than I thought. In a short period of time, I was able to give up coffee and alcohol, as well as drastically cut down on sugar.
I learned how deeply my friends, family, and even colleagues care about me.
I have reconnected and have gotten closer to some friends as a result.
I've gotten extra 1-1 time with my mother and my brothers, that wouldn't have happened otherwise.
I'm more empathetic when I hear about the troubles of others, whether it's a death in the family or a health problem.
I've learned a lot about my body and how to take care of it, that will be useful to me, and maybe also to my friends and family, after my treatment is finished.
I learned that I'm tougher and more disciplined than I thought. In a short period of time, I was able to give up coffee and alcohol, as well as drastically cut down on sugar.
I learned how deeply my friends, family, and even colleagues care about me.
I have reconnected and have gotten closer to some friends as a result.
I've gotten extra 1-1 time with my mother and my brothers, that wouldn't have happened otherwise.
I'm more empathetic when I hear about the troubles of others, whether it's a death in the family or a health problem.
Wednesday, May 6, 2009
Day of Chemo Checklist
The first time I did chemo, I had to stay in the inpatient clinic, where I shared a room with 3 other chemo patients -- all much older than me, 2 of whom were staying in the hospital for a few days.
After my first chemo treatment showed that I had no allergic reactions to any of the chemo drugs, I was allowed to switch to the dagbehandling (day treatment) clinic, which was a large room equipped with about 10 blue dental chairs. Other patients came and went in a manner that indicated this was routine for them. One brought cake to share with everyone else in the room, a nice gesture, though sweet foods are supposed to increase nausea so I turned it down. One woman was hairless, pigmentless, and kept perfectly still for three hours with her eyes closed. She seemed to be dead already. The guy sitting next to me still had a full head of salt-and-pepper hair and enough energy to entertain three visitors. Again, I was by far the youngest person in the room.
For my next chemo session, I want to bring:
* an engrossing book
* noise-cancelling earphones
* my IPOD with the latest moth.org and This American Life episodes loaded
* my laptop and a good DVD
* two fresh bagels
* peanut butter
* some fruit
* ginger candy
* a big bottle of water
* ginger ale
* sea-bands
After my first chemo treatment showed that I had no allergic reactions to any of the chemo drugs, I was allowed to switch to the dagbehandling (day treatment) clinic, which was a large room equipped with about 10 blue dental chairs. Other patients came and went in a manner that indicated this was routine for them. One brought cake to share with everyone else in the room, a nice gesture, though sweet foods are supposed to increase nausea so I turned it down. One woman was hairless, pigmentless, and kept perfectly still for three hours with her eyes closed. She seemed to be dead already. The guy sitting next to me still had a full head of salt-and-pepper hair and enough energy to entertain three visitors. Again, I was by far the youngest person in the room.
For my next chemo session, I want to bring:
* an engrossing book
* noise-cancelling earphones
* my IPOD with the latest moth.org and This American Life episodes loaded
* my laptop and a good DVD
* two fresh bagels
* peanut butter
* some fruit
* ginger candy
* a big bottle of water
* ginger ale
* sea-bands
Tuesday, May 5, 2009
Chemo Procrastination?
I've read about 'chemo brain' and 'chemo fog', but is there such a thing as 'chemo procrastination'? Even when I have the energy and the time, I keep ignoring everything unless it's related to an urgent work project or management of my cancer treatment. I'm especially obsessed with the latter. I'll spend hours on the internet reading cancer-related blogs, instead of spending the 5 minutes needed to scan my income statement so that my accountant can finally finish my soon-to-be-overdue tax return.
I have to-do lists scattered all over my apartment, with not a thing on them done.
I have to-do lists scattered all over my apartment, with not a thing on them done.
Vitamin D
I'm taking 1000 mg of Vitamin D daily because Suzanne (my nutrition guru), who generally favors eating real food over popping supplements, says that it has been consistently associated with better cancer treatment outcomes. In fact, she takes the same supplement herself and thinks that almost everyone should.
Her article explaining the whys and hows of Vitamin D much better than I ever could is here: Vitamin D, Wonder Nutrient
The importance of Vitamin D supplementation is definitely not recognized in Holland. At the Bio Markt (the Dutch version of Whole Foods), there are floor-to-ceiling shelves of vitamins in alphabetical order. Vitamin C can claim almost a whole shelf to itself. But there is a gap between Vitamin C and Vitamin E, a dark hollow space that seems to say: no, we didn't misshelve D, we just don't think you should take it.
At Etos (the Dutch version of Long's or CVS), I could only find Vitamin D in combination with calcium. Three of these tablets a day would provide 750 mg of calcium and 7.5 mg of Vitamin D. But the recommended dose of Vitamin D is at least 1000 mg!
After mentioning this to Suzanne, she sent me a link to her source of Vitamin D. I ended up ordering 1000 mg Vitamin D gelcaps very cheaply (180 gelcaps for about 9 dollars, including shipping) via iherb.com and having them shipped to my brother, who will be flying here next week.
This whole experience has started me thinking that Vitamin D misinformation could be one of the biggest public health problems that should be addressed. If I were to accept everything that Suzanne wrote in her article, there are a number of things that should be changed:
1) Vitamin D supplementation should be included as part of chemotherapy treatment, if not already taken.
2) Vitamin D in higher doses should be made readily available wherever vitamins are sold.
3) The general public should be encouraged to swallow Vitamin D daily, especially in the north, through general media campaigns.
4) Certain high-risk populations (African-Americans living in Europe for example) should be targeted through tailored media campaigns.
5) Vitamin D supplementation should be taught in schools (at what age should it begin?)
It seems to me that there is a real need for a grass-roots campaign to increase the visibility of Vitamin D (perhaps following the trajectory of the successful campaign to increase calcium supplementation in adult women), but I'm not sure that I have the time or energy to launch it.
Her article explaining the whys and hows of Vitamin D much better than I ever could is here: Vitamin D, Wonder Nutrient
The importance of Vitamin D supplementation is definitely not recognized in Holland. At the Bio Markt (the Dutch version of Whole Foods), there are floor-to-ceiling shelves of vitamins in alphabetical order. Vitamin C can claim almost a whole shelf to itself. But there is a gap between Vitamin C and Vitamin E, a dark hollow space that seems to say: no, we didn't misshelve D, we just don't think you should take it.
At Etos (the Dutch version of Long's or CVS), I could only find Vitamin D in combination with calcium. Three of these tablets a day would provide 750 mg of calcium and 7.5 mg of Vitamin D. But the recommended dose of Vitamin D is at least 1000 mg!
After mentioning this to Suzanne, she sent me a link to her source of Vitamin D. I ended up ordering 1000 mg Vitamin D gelcaps very cheaply (180 gelcaps for about 9 dollars, including shipping) via iherb.com and having them shipped to my brother, who will be flying here next week.
This whole experience has started me thinking that Vitamin D misinformation could be one of the biggest public health problems that should be addressed. If I were to accept everything that Suzanne wrote in her article, there are a number of things that should be changed:
1) Vitamin D supplementation should be included as part of chemotherapy treatment, if not already taken.
2) Vitamin D in higher doses should be made readily available wherever vitamins are sold.
3) The general public should be encouraged to swallow Vitamin D daily, especially in the north, through general media campaigns.
4) Certain high-risk populations (African-Americans living in Europe for example) should be targeted through tailored media campaigns.
5) Vitamin D supplementation should be taught in schools (at what age should it begin?)
It seems to me that there is a real need for a grass-roots campaign to increase the visibility of Vitamin D (perhaps following the trajectory of the successful campaign to increase calcium supplementation in adult women), but I'm not sure that I have the time or energy to launch it.
Treatment Against Burping
The burping and belching is still driving me mad. During Cycle 1, after spending all day googling on the search terms "burping", "belching", or "gas" plus "chemo" and "cancer", I didn't come up with much of anything useful, except a few community forum posts that indicated that I wasn't the only one who was perplexed by this not-often-mentioned side effect of chemotherapy.
On one thread, someone posted that he noticed that his mother burped continuously during her treatment period and was curious as to why, which provoked indignant responses like: "your mother has cancer and you're worried about burping?!" To this I would reply, it's hard to feel normal when your body does things it doesn't normally do. Plus, as I mentioned in an earlier post, the burping makes nausea worse.
My brother suggested over-the-counter Maalox, but that didn't work. Then I told my doctor, and he prescribed a powerful proton pump inhibitor called Pantecta (pantoprazole) to use in combination with the anti-emetics during Cycle 2. That didn't work either. In fact, I'm 90% sure it caused me to have severe heart palpitations (listed as a possible side effect for < 2% of the population), because I didn't have heart palpitations during Cycle 1, and they stopped almost immediately after I stopped taking Pantecta.
Then, I happened to be reading an website article on improving digestion and stumbled upon a few sentences about hypochlorhydria:
"Low stomach acid (hypochlorhydria) is common, especially in older people since as we age, we make less stomach acid. Research suggests that as many as half of the people over 60 years old have hypochlorhydria. A variety of factors can inhibit sufficient stomach acid production including the pathogenic bacteria, Helicobacter pylori, and frequent use of antacids. Hypochlorhydria is also associated with many diseases, such as asthma, celiac sprue, hepatitis, rheumatoid arthritis, osteoporosis, and diabetes mellitus. Signs of hypochlorhydria include a sense of fullness after eating, bloating, excessive belching, indigestion, multiple food allergies, undigested food in the stool, and peeling and cracked fingernails."
Bingo! I had almost every symptom listed to some degree.
After further investigation on the net, I discovered:
1) Hypochlorhydria is often misdiagnosed by doctors who almost always jump to the conclusion that antacids should be prescribed, which would only make the problem worse!
2) Burping can be a serious problem because it's a sign that the body is not capable of breaking food down into its component nutrients; you can eat all you want and still be starving and undernourished. I felt especially frustrated when reading this, because I had been spending so much time researching nutrition and preparing healthy food to eat, only to learn that most of it is just being flushed down the toilet!
3) Hypochlorhydria is a well-known side effect of proton pump inhibitors. After still more research, I discovered that proton pump inhibitors are recommended to mitigate some of the side effects of CHOP chemotherapy. But as far as I know, I hadn't been taking any proton pump inhibitors except for Pantecta, which I only took after I already experienced burping.
More detective work revealed that it is possible to self-diagnose hypochlorhydia by performing a challenge test with hydrochloric acid. In fact, the challenge test would also determine the appropriate treatment dosage for my level of stomach acid deficiency. Perfect.
The local Bio-Markt (Holland's version of Whole Foods Market) didn't have any hydrochloric acid in stock, but they offered to order HCl Plus by Biotics Research for me. This is a combination pill of HCl, pepsin (to simulate the body to produce HCl naturally), and Vitamin B12 (because persons with low stomach acid are always deficient in B12).
I still haven't tried the challenge test yet, but I plan to do it soon. It would be amazing to have this mystery solved!
***********
It's now a few days later and I've started taking HCl with every meal, but frankly: I can't tell whether it's working. I just read on the internet that one person took many pills, didn't feel any burning, but later got tested for stomach acid and found out that his level was normal. I don't feel any burning when I take one pill; I'm still burping, but I'm afraid to take more and end up with a self-created ulcer. So on Wednesday when I go in for my next consult, I'll see whether I can persuade my doctor to check my stomach acid level. I am now afraid to take anything for fear that my problem will worsen, but I'd really like to make these side effects go away for good.
On one thread, someone posted that he noticed that his mother burped continuously during her treatment period and was curious as to why, which provoked indignant responses like: "your mother has cancer and you're worried about burping?!" To this I would reply, it's hard to feel normal when your body does things it doesn't normally do. Plus, as I mentioned in an earlier post, the burping makes nausea worse.
My brother suggested over-the-counter Maalox, but that didn't work. Then I told my doctor, and he prescribed a powerful proton pump inhibitor called Pantecta (pantoprazole) to use in combination with the anti-emetics during Cycle 2. That didn't work either. In fact, I'm 90% sure it caused me to have severe heart palpitations (listed as a possible side effect for < 2% of the population), because I didn't have heart palpitations during Cycle 1, and they stopped almost immediately after I stopped taking Pantecta.
Then, I happened to be reading an website article on improving digestion and stumbled upon a few sentences about hypochlorhydria:
"Low stomach acid (hypochlorhydria) is common, especially in older people since as we age, we make less stomach acid. Research suggests that as many as half of the people over 60 years old have hypochlorhydria. A variety of factors can inhibit sufficient stomach acid production including the pathogenic bacteria, Helicobacter pylori, and frequent use of antacids. Hypochlorhydria is also associated with many diseases, such as asthma, celiac sprue, hepatitis, rheumatoid arthritis, osteoporosis, and diabetes mellitus. Signs of hypochlorhydria include a sense of fullness after eating, bloating, excessive belching, indigestion, multiple food allergies, undigested food in the stool, and peeling and cracked fingernails."
Bingo! I had almost every symptom listed to some degree.
After further investigation on the net, I discovered:
1) Hypochlorhydria is often misdiagnosed by doctors who almost always jump to the conclusion that antacids should be prescribed, which would only make the problem worse!
2) Burping can be a serious problem because it's a sign that the body is not capable of breaking food down into its component nutrients; you can eat all you want and still be starving and undernourished. I felt especially frustrated when reading this, because I had been spending so much time researching nutrition and preparing healthy food to eat, only to learn that most of it is just being flushed down the toilet!
3) Hypochlorhydria is a well-known side effect of proton pump inhibitors. After still more research, I discovered that proton pump inhibitors are recommended to mitigate some of the side effects of CHOP chemotherapy. But as far as I know, I hadn't been taking any proton pump inhibitors except for Pantecta, which I only took after I already experienced burping.
More detective work revealed that it is possible to self-diagnose hypochlorhydia by performing a challenge test with hydrochloric acid. In fact, the challenge test would also determine the appropriate treatment dosage for my level of stomach acid deficiency. Perfect.
The local Bio-Markt (Holland's version of Whole Foods Market) didn't have any hydrochloric acid in stock, but they offered to order HCl Plus by Biotics Research for me. This is a combination pill of HCl, pepsin (to simulate the body to produce HCl naturally), and Vitamin B12 (because persons with low stomach acid are always deficient in B12).
I still haven't tried the challenge test yet, but I plan to do it soon. It would be amazing to have this mystery solved!
***********
It's now a few days later and I've started taking HCl with every meal, but frankly: I can't tell whether it's working. I just read on the internet that one person took many pills, didn't feel any burning, but later got tested for stomach acid and found out that his level was normal. I don't feel any burning when I take one pill; I'm still burping, but I'm afraid to take more and end up with a self-created ulcer. So on Wednesday when I go in for my next consult, I'll see whether I can persuade my doctor to check my stomach acid level. I am now afraid to take anything for fear that my problem will worsen, but I'd really like to make these side effects go away for good.
Treatment Against Nausea
Nausea's usually one of the worst side effects of chemo, although it seems to affect everyone to a different degree and some not at all. I read that younger women are typically more affected.
The good news is that an array of powerful medications are available for fighting nausea, so if one combination doesn't work, then others can be tried until the right one is found. But in addition to that, there are a lot of other natural ways to fight nausea:
1) Sea bands, which use acupressure and can be found in any drug store in the U.S. I did indeed notice a difference when I put these on, but not enough to give up my anti-emetics.
2) Ginger: candied or raw or cut up into tea with some lemon & honey or in ginger beer (make sure the ingredients list real ginger, rather than ginger flavoring)
3) Marijuana: the indica variety (as opposed to sativa) is supposed to work wonders against nausea, appetite, and vomiting. A friend of a friend, who found the side effects of anti-nausea medications too debilitating, smoked 30-45 minutes before every chemo treatment and as often as needed afterwards. I tried smoking a few tokes around Day 10 after my first chemotherapy, but I didn't like the feeling of lightheadness and dizziness that went along with being high. It reminded me too much of my first few days after chemo.
4) Eating: eat many small meals per day instead of three large meals, eat bland foods, chew slowly, drink lots of water
5) Eating, Part II: make sure you eat, even if you have no interest in eating. Otherwise, the nausea will just get worse.
6) Pills: if the pill taste increases the nausea, try crushing them in food (usually meds that are not slow-release meds may be crushed) or enclosing them in gelcaps you can buy at the pharmacy.
I'm still looking for my nausea magic bullet. I still feel extremely nauseous and vomit-prone on Day 1 of chemo and then progressively less nauseous until Day 10. But my anti-nausea drug regimen -- taking granisetron (kytrol) during Days 1-3 and metoclopram preventively from Days 4-7 -- in addition to following the tips above, have helped a lot.
The good news is that an array of powerful medications are available for fighting nausea, so if one combination doesn't work, then others can be tried until the right one is found. But in addition to that, there are a lot of other natural ways to fight nausea:
1) Sea bands, which use acupressure and can be found in any drug store in the U.S. I did indeed notice a difference when I put these on, but not enough to give up my anti-emetics.
2) Ginger: candied or raw or cut up into tea with some lemon & honey or in ginger beer (make sure the ingredients list real ginger, rather than ginger flavoring)
3) Marijuana: the indica variety (as opposed to sativa) is supposed to work wonders against nausea, appetite, and vomiting. A friend of a friend, who found the side effects of anti-nausea medications too debilitating, smoked 30-45 minutes before every chemo treatment and as often as needed afterwards. I tried smoking a few tokes around Day 10 after my first chemotherapy, but I didn't like the feeling of lightheadness and dizziness that went along with being high. It reminded me too much of my first few days after chemo.
4) Eating: eat many small meals per day instead of three large meals, eat bland foods, chew slowly, drink lots of water
5) Eating, Part II: make sure you eat, even if you have no interest in eating. Otherwise, the nausea will just get worse.
6) Pills: if the pill taste increases the nausea, try crushing them in food (usually meds that are not slow-release meds may be crushed) or enclosing them in gelcaps you can buy at the pharmacy.
I'm still looking for my nausea magic bullet. I still feel extremely nauseous and vomit-prone on Day 1 of chemo and then progressively less nauseous until Day 10. But my anti-nausea drug regimen -- taking granisetron (kytrol) during Days 1-3 and metoclopram preventively from Days 4-7 -- in addition to following the tips above, have helped a lot.
Treatment Against Mouth Sores
I don't have to avoid citrus fruit or rinse my mouth with salt water anymore. I've figured out how to self-treat mouth sores.
Besides rinsing my mouth after every meal, brushing my tongue and where the gums meet the teeth once a day, flossing and using water pic once in a while, and using wooden toothsticks to massage the gums between the teeth every night, I've also started to massage my gums with the pads of my fingers. Not just the gum area around the teeth, but my entire mouth. It only takes a few seconds a day and it really works!
Besides rinsing my mouth after every meal, brushing my tongue and where the gums meet the teeth once a day, flossing and using water pic once in a while, and using wooden toothsticks to massage the gums between the teeth every night, I've also started to massage my gums with the pads of my fingers. Not just the gum area around the teeth, but my entire mouth. It only takes a few seconds a day and it really works!
Monday, May 4, 2009
Day-by-Day Breakdown, Chemo Cycle II
Day 1: extreme nausea (made some mistakes such as not taking my granisetron in time because it was not available at my pharmacy and not bringing enough food to chemo so that when I finally ate, I ate too fast and I ate everything on the sandwich, including the cheese), dizziness, and fatigue
Day 2: nausea in the morning, fatigue, slight cough, hyperactivity leading to sleeplessness (side effect of prednisolon), slight neuropathy, more hair loss
Day 3: slight nausea in the morning, slight cough, hyperactivity, a lot of hair loss in the shower, breakthrough pain
Day 4: slight nausea, heart palpitations, breakthrough pain
Day 5: same as Day 4
Day 6: same as Day 4
Day 7 (Queen's Day): slight nausea, heart palpitations, some breakthrough pain, fatigue, strange taste in saliva
Day 8 (took only Pantecta against nausea today): slight nausea, burping, very strong heart palpitations, slight cough, some neuropathy, some night sweats, toes black, thumbnails turning black, stiff/sore right leg, stiff right arm
Day 9 (took only metoclopram against nausea today): same as Day 8 but with only slight heart palpitations
Day 10 (took no medications against nausea today, started yoga/meditation/self-massage for hands): burping, congestion, slight cough, some neuropathy, toes black, thumbnails turning black
Day 11: same as Day 10 but with a bit more energy, actually one of the best days I've had since diagnosis
Day 12: same as Day 10 but with much stronger cough and congestion (I'm guessing that my dip period begins on Day 12)
Day 13: same as Day 10 but with much stronger cough and congestion (I'm guessing that my dip period begins on Day 12). I also accidentally cut myself on Day 12. It's was a tiny cut that would have ordinarily closed in an hour, but today it's still bleeding like a fresh cut. I put Bacitracin and a bandaid on it, to prevent infection, but the bleeding would probably indicate a low platelet count.
This chemo cycle seems to be better against nausea, though I have hopes that I won't vomit at all during Round 3, and I still feel queasy from time to time. I'm concerned about the atrial fibrillations. Even though they don't seem to be considered a serious side effect, I have this sensation that I need to take deep breaths to prevent myself from having a heart attack. I'm also concerned about the breakthrough pain; does it mean that the cancer is still fighting back?
I've had this cold since the week of March 1 -- thus, for more than two months. I am betting now that I'll have it for the entire course of chemotherapy.
Day 2: nausea in the morning, fatigue, slight cough, hyperactivity leading to sleeplessness (side effect of prednisolon), slight neuropathy, more hair loss
Day 3: slight nausea in the morning, slight cough, hyperactivity, a lot of hair loss in the shower, breakthrough pain
Day 4: slight nausea, heart palpitations, breakthrough pain
Day 5: same as Day 4
Day 6: same as Day 4
Day 7 (Queen's Day): slight nausea, heart palpitations, some breakthrough pain, fatigue, strange taste in saliva
Day 8 (took only Pantecta against nausea today): slight nausea, burping, very strong heart palpitations, slight cough, some neuropathy, some night sweats, toes black, thumbnails turning black, stiff/sore right leg, stiff right arm
Day 9 (took only metoclopram against nausea today): same as Day 8 but with only slight heart palpitations
Day 10 (took no medications against nausea today, started yoga/meditation/self-massage for hands): burping, congestion, slight cough, some neuropathy, toes black, thumbnails turning black
Day 11: same as Day 10 but with a bit more energy, actually one of the best days I've had since diagnosis
Day 12: same as Day 10 but with much stronger cough and congestion (I'm guessing that my dip period begins on Day 12)
Day 13: same as Day 10 but with much stronger cough and congestion (I'm guessing that my dip period begins on Day 12). I also accidentally cut myself on Day 12. It's was a tiny cut that would have ordinarily closed in an hour, but today it's still bleeding like a fresh cut. I put Bacitracin and a bandaid on it, to prevent infection, but the bleeding would probably indicate a low platelet count.
This chemo cycle seems to be better against nausea, though I have hopes that I won't vomit at all during Round 3, and I still feel queasy from time to time. I'm concerned about the atrial fibrillations. Even though they don't seem to be considered a serious side effect, I have this sensation that I need to take deep breaths to prevent myself from having a heart attack. I'm also concerned about the breakthrough pain; does it mean that the cancer is still fighting back?
I've had this cold since the week of March 1 -- thus, for more than two months. I am betting now that I'll have it for the entire course of chemotherapy.
Viva Amsterdam!
Okay, non-Dutch cancer patients. Prepare to be jealous.
I had my arbo doctor appointment this morning.
A few weeks ago, a letter arrived in the post, written in Dutch, requesting that I meet with the arbo doctor and notify my company if I cannot attend. Then a woman from Human Resources called me to ask if I received the letter. I asked her what it was all about, because we have nothing like this in the States.
Apparently, by law, all employees who are absent from work for more than 5 days meet with an arbo doctor. I didn't need to bring or prepare anything for the meeting, and Human Resources insisted that I take a taxi to the meeting and back.
I asked a long term resident about the arbo doctor and she said not to worry; the company is absolutely not checking up on me. In fact, the arbo doctor will typically take sides with the patient over the company. They are there to ensure that the employee is not overworked during his/her illness and to ease the transition back to work. Sometimes they insist, for example, that an employee on maternity leave only work half-days for the first week they are back in the office.
The arbo doctor asked me a few questions about my diagnosis, treatment, and its side effects. He also explained that I could not legally lose my job for up to two years. The first year, I would continue to receive 100% of my salary. The second year, I would receive 70%. The doctor showed me the form he was completing to send to my company, which legally could not mention my diagnosis or specific side effects; mostly it just stated that I had been working approximately 20 hours a week due to problems with fatigue and concentration, resulting from my treatment. He was careful to tell me that stating this number in the letter was by no means binding me to work 20 hours a week. Also as required by law, we will continue to meet every 6 weeks by telephone or email throughout my treatment.
Wow. While I've never been sick for more than 5 days in the U.S., I'm pretty sure that's not how it works there. My former company combined sick and vacation days, and we had 20 days in total. I know I had short-term and long-term disability benefits, but I never bothered to look at the fine print, so I have no idea whether it is anywhere near as simple or comprehensive as the Dutch system.
My cousin just sent me a link to an article in the New York Times that goes on quite a bit about the 52% tax rate in the Netherlands. The article mentions some of the benefits citizens get as a result, but not this one. I am feeling truly thankful that I am here at this moment...and also a little bit guilty, as I don't even pay the 52% tax rate. As an expat, I get a big tax break called the 30% ruling, which means that I don't get taxed on the first 30% of my income. Oh well: one doesn't turn down free money!
I had my arbo doctor appointment this morning.
A few weeks ago, a letter arrived in the post, written in Dutch, requesting that I meet with the arbo doctor and notify my company if I cannot attend. Then a woman from Human Resources called me to ask if I received the letter. I asked her what it was all about, because we have nothing like this in the States.
Apparently, by law, all employees who are absent from work for more than 5 days meet with an arbo doctor. I didn't need to bring or prepare anything for the meeting, and Human Resources insisted that I take a taxi to the meeting and back.
I asked a long term resident about the arbo doctor and she said not to worry; the company is absolutely not checking up on me. In fact, the arbo doctor will typically take sides with the patient over the company. They are there to ensure that the employee is not overworked during his/her illness and to ease the transition back to work. Sometimes they insist, for example, that an employee on maternity leave only work half-days for the first week they are back in the office.
The arbo doctor asked me a few questions about my diagnosis, treatment, and its side effects. He also explained that I could not legally lose my job for up to two years. The first year, I would continue to receive 100% of my salary. The second year, I would receive 70%. The doctor showed me the form he was completing to send to my company, which legally could not mention my diagnosis or specific side effects; mostly it just stated that I had been working approximately 20 hours a week due to problems with fatigue and concentration, resulting from my treatment. He was careful to tell me that stating this number in the letter was by no means binding me to work 20 hours a week. Also as required by law, we will continue to meet every 6 weeks by telephone or email throughout my treatment.
Wow. While I've never been sick for more than 5 days in the U.S., I'm pretty sure that's not how it works there. My former company combined sick and vacation days, and we had 20 days in total. I know I had short-term and long-term disability benefits, but I never bothered to look at the fine print, so I have no idea whether it is anywhere near as simple or comprehensive as the Dutch system.
My cousin just sent me a link to an article in the New York Times that goes on quite a bit about the 52% tax rate in the Netherlands. The article mentions some of the benefits citizens get as a result, but not this one. I am feeling truly thankful that I am here at this moment...and also a little bit guilty, as I don't even pay the 52% tax rate. As an expat, I get a big tax break called the 30% ruling, which means that I don't get taxed on the first 30% of my income. Oh well: one doesn't turn down free money!
Sunday, May 3, 2009
Marinated Cucumber Recipe
For some reason, vinegary things seem to go down well. And cucumbers are on the list of the world's healthiest foods. This is my mom's recipe:
1. Wash cucumber well and slice as thin as you can.
2. If you have time, soak the slices in salty water for > 1/2 hour. If you are in a hurry, sprinkle the slices with a little salt, let sit 5-10 minutes, and rinse the salt off.
4. Squeeze out the water.
5. Add sugar, vinegar, and sesame oil to taste. You can also add garlic sesame seeds and/or a little soy sauce.
You can eat this immediately or you can keep it in the fridge. You can do the same thing to asparagus after you cook it in salty boiled water for 5-8 minutes and cool it off naturally or in cold water.
1. Wash cucumber well and slice as thin as you can.
2. If you have time, soak the slices in salty water for > 1/2 hour. If you are in a hurry, sprinkle the slices with a little salt, let sit 5-10 minutes, and rinse the salt off.
4. Squeeze out the water.
5. Add sugar, vinegar, and sesame oil to taste. You can also add garlic sesame seeds and/or a little soy sauce.
You can eat this immediately or you can keep it in the fridge. You can do the same thing to asparagus after you cook it in salty boiled water for 5-8 minutes and cool it off naturally or in cold water.
Monday, April 27, 2009
Insurance
I'm worried about my insurability, whenever I move back to the States.
This is what another cancer survivor wrote to me about insurance.
"The deal with breast cancer: When you have been treated for early stage breast cancer, you have a 10% (stage 1) to 20% (stage 2) of metastatic recurrence in the 10 years after treatment. Once you have been clean for ten years, you are statistically 'cured'. Your odds of developing a new cancer are the same as the general population. So between the time the doctors declare that you have "no evidence of disease" and the time that you have been clean for 10 years, you are ineligible for a new individual health insurance policy (at least one that will treat breast cancer, its complications, or a recurrence). After the 10 year mark, getting a policy is the same as anyone else."
"This is generally bad news for breast cancer survivors, especially since many women want to make a work change after surviving breast cancer. There is a work around, however. This ineligibility applies only to individual policies. You can still get a group policy (i.e., through an employer). Some of the women in my support group have done the following: they hire a part time employee or create a firm with other part-time freelancers, then they get a group policy for their company or firm. You only need one other person to create a group plan. And if you work part time for a company, you are still eligible for health insurance and they can't question your health history."
"Please note that different types of cancer have different remission periods. For lymphoma you may be considered statistically 'cured' after less than 10 years. I don't know what that number is. I learned what little I know on the subject from my support group for young breast cancer survivors. You should eventually find a lymphoma group or a young survivors group (i.e., Young Survival Coalition) to help you navigate the issue."
I hunted around on the net and found some young survivor's groups. None that are specific to non-Hodgkin's lymphoma, let alone my particular type of non-Hodgkin's lymphoma (which only affects 2% of all patients with non-Hodgkin's lymphoma). Here are the links:
www.seventyk.org
www.imtooyoungforthis.org
www.planetcancer.org
www.fertilehope.org
I haven't checked out any of them yet, but I plan to do so soon. Whew, I could really spend weeks and weeks just doing research on my cancer, it seems. My brain already feels overloaded from all the information I'm cramming in.
This is what another cancer survivor wrote to me about insurance.
"The deal with breast cancer: When you have been treated for early stage breast cancer, you have a 10% (stage 1) to 20% (stage 2) of metastatic recurrence in the 10 years after treatment. Once you have been clean for ten years, you are statistically 'cured'. Your odds of developing a new cancer are the same as the general population. So between the time the doctors declare that you have "no evidence of disease" and the time that you have been clean for 10 years, you are ineligible for a new individual health insurance policy (at least one that will treat breast cancer, its complications, or a recurrence). After the 10 year mark, getting a policy is the same as anyone else."
"This is generally bad news for breast cancer survivors, especially since many women want to make a work change after surviving breast cancer. There is a work around, however. This ineligibility applies only to individual policies. You can still get a group policy (i.e., through an employer). Some of the women in my support group have done the following: they hire a part time employee or create a firm with other part-time freelancers, then they get a group policy for their company or firm. You only need one other person to create a group plan. And if you work part time for a company, you are still eligible for health insurance and they can't question your health history."
"Please note that different types of cancer have different remission periods. For lymphoma you may be considered statistically 'cured' after less than 10 years. I don't know what that number is. I learned what little I know on the subject from my support group for young breast cancer survivors. You should eventually find a lymphoma group or a young survivors group (i.e., Young Survival Coalition) to help you navigate the issue."
I hunted around on the net and found some young survivor's groups. None that are specific to non-Hodgkin's lymphoma, let alone my particular type of non-Hodgkin's lymphoma (which only affects 2% of all patients with non-Hodgkin's lymphoma). Here are the links:
www.seventyk.org
www.imtooyoungforthis.org
www.planetcancer.org
www.fertilehope.org
I haven't checked out any of them yet, but I plan to do so soon. Whew, I could really spend weeks and weeks just doing research on my cancer, it seems. My brain already feels overloaded from all the information I'm cramming in.
Treatment Adjustments
Two days before every chemo infusion, I have a half-hour appointment with my doctor to review the results from the last chemo cycle.
Doctor Leeksma was quite pleased with the round 1 results. In fact, he even used the word "impressive". I told him that all outward signs of the tumor disappeared by Day 3 and I stopped taking pain medications by Day 5. He checked the site of the lump himself and didn't see any evidence that there was ever anything there, except for the small scar where they inserted the biopsy needle.
I told him that I suffered from nausea for 10 days, as well as non-stop burping for a few of those 10 days, and he indicated that they might be able to fix that.
My new regimen is:
100 mg Prednisolone every morning to kill tumor cells
1 Granisetron (Kytrol) tablet morning and evening to be taken against nausea and vomiting twice a day for the first 3 days in the chemo cycle
Metoclopramide HCl 3 x a day to be taken for nausea after Chemo Day 3
500 mg Magnesium Hydrochloride PCH with every meal for constipation
40 mg Pantecta every morning for acid reflux and burping
So basically, compared to the previous cycle, we dropped the Allopurinol, which he said was no longer needed because I did not appear to have any kidney reactions, and added Pantecta, which would help with the nausea.
This particular combination appears to be the winning one. I was nauseous only on the first day, but that was probably because I took the Granisetron late and didn't take the Pantecta at all. The following days, I had slight nausea in the morning but hardly any nausea for the rest of the day. The main issues I experience now are hyperactivity and sleeplessness (from the prednisolone) and residual coughing. I tried to get a prescription for codeine so I could sleep at night, but the doctor recommended that I avoid cough medications if I can. And it turns out that the coughing is not so bad now.
Besides the drug changes, we also spent some time discussing the further course of treatment. My brother told me that in the States, they would probably have done a PET scan and full CT scan at the beginning of treatment and after the third cycle.
My doc says he plans to order a full CT after the 4th chemo cycle. If after the 8th cycle, there's still residual tumor, he will order a PET scan to make sure that it's not active. It seems like they don't generally do PETs here as much as they do in the States, which may be a cost or radiation issue. I asked my brother later if he thought I should be more assertive in asking for an earlier PET scan. His (paraphrased) reply was:
"Let me run this by one of my attendings. As a standard, we do PET scans or gallium scans (functional imaging) prior to starting treatment and then repeat until it's negative. I can't say that he's doing anything wrong because there are few studies for this lymphoma. In other tumors, we would consider changing therapy if the PET didn't become negative after 4 cycles. We would even consider changing after 2 cycles if there wasn't significant improvement. I feel the problem with waiting until after 8 cycles is mainly that you have no prior scans for comparison, and the PET scan is overly sensitive and sometimes you can't tell what is tumor and what's not or what's new and what's old."
After his reply, I felt better because I'm confident that the current treatment is working just fine and doesn't need to be changed.
Yesterday, I was doing some research on the internet and stumbled on an article that seemed to indicate other regimens (e.g., MACOPB) combined with radiation produced the best results for mediastinal diffuse large B-cell lymphoma. I asked my brother about this too:
"I did look at these studies. Most people in the US would use R-CHOP. Those other regimens are not commonly used in the US. These regimens are probably more common in Europe, where they tend to favor stronger chemo regimens. There's not an obvious advantage for the more intensive regimens and have the price of higher toxicity and some require hospital stays for a few days to get the chemo in. Additionally, none of those regimens used Rituxan which should improve outcomes significantly. My attending, who has over 20 years of experience with lymphomas, would use R-CHOP."
"The radiation is a different story. I'm not sure how big the tumor was before starting chemo, but we tend to use radiation if it was big. We would probably use 6 cycles of R-CHOP followed by radiation. The drawbacks to radiation are that it can cause future health problems, such as early coronary heart disease, damage to the lungs, etc., although they carefully monitor how much radiation you actually receive. It seems that your doctor is using an extra 2 cycles of RCHOP in lieu of radiation because you're young and he doesn't want to cause long term problems with radiation. Difficult to say if this is right or wrong because we don't have the studies to tell us. These are more subtleties of medicine which you can argue for either side. I can only tell you what my attendings or I would do."
Again, I felt reassured after this explanation, as I remember that my doctor specifically stated he would prefer that we try chemo instead of surgery or radiation because I'm still young and both have such damaging long-term effects.
Doctor Leeksma was quite pleased with the round 1 results. In fact, he even used the word "impressive". I told him that all outward signs of the tumor disappeared by Day 3 and I stopped taking pain medications by Day 5. He checked the site of the lump himself and didn't see any evidence that there was ever anything there, except for the small scar where they inserted the biopsy needle.
I told him that I suffered from nausea for 10 days, as well as non-stop burping for a few of those 10 days, and he indicated that they might be able to fix that.
My new regimen is:
100 mg Prednisolone every morning to kill tumor cells
1 Granisetron (Kytrol) tablet morning and evening to be taken against nausea and vomiting twice a day for the first 3 days in the chemo cycle
Metoclopramide HCl 3 x a day to be taken for nausea after Chemo Day 3
500 mg Magnesium Hydrochloride PCH with every meal for constipation
40 mg Pantecta every morning for acid reflux and burping
So basically, compared to the previous cycle, we dropped the Allopurinol, which he said was no longer needed because I did not appear to have any kidney reactions, and added Pantecta, which would help with the nausea.
This particular combination appears to be the winning one. I was nauseous only on the first day, but that was probably because I took the Granisetron late and didn't take the Pantecta at all. The following days, I had slight nausea in the morning but hardly any nausea for the rest of the day. The main issues I experience now are hyperactivity and sleeplessness (from the prednisolone) and residual coughing. I tried to get a prescription for codeine so I could sleep at night, but the doctor recommended that I avoid cough medications if I can. And it turns out that the coughing is not so bad now.
Besides the drug changes, we also spent some time discussing the further course of treatment. My brother told me that in the States, they would probably have done a PET scan and full CT scan at the beginning of treatment and after the third cycle.
My doc says he plans to order a full CT after the 4th chemo cycle. If after the 8th cycle, there's still residual tumor, he will order a PET scan to make sure that it's not active. It seems like they don't generally do PETs here as much as they do in the States, which may be a cost or radiation issue. I asked my brother later if he thought I should be more assertive in asking for an earlier PET scan. His (paraphrased) reply was:
"Let me run this by one of my attendings. As a standard, we do PET scans or gallium scans (functional imaging) prior to starting treatment and then repeat until it's negative. I can't say that he's doing anything wrong because there are few studies for this lymphoma. In other tumors, we would consider changing therapy if the PET didn't become negative after 4 cycles. We would even consider changing after 2 cycles if there wasn't significant improvement. I feel the problem with waiting until after 8 cycles is mainly that you have no prior scans for comparison, and the PET scan is overly sensitive and sometimes you can't tell what is tumor and what's not or what's new and what's old."
After his reply, I felt better because I'm confident that the current treatment is working just fine and doesn't need to be changed.
Yesterday, I was doing some research on the internet and stumbled on an article that seemed to indicate other regimens (e.g., MACOPB) combined with radiation produced the best results for mediastinal diffuse large B-cell lymphoma. I asked my brother about this too:
"I did look at these studies. Most people in the US would use R-CHOP. Those other regimens are not commonly used in the US. These regimens are probably more common in Europe, where they tend to favor stronger chemo regimens. There's not an obvious advantage for the more intensive regimens and have the price of higher toxicity and some require hospital stays for a few days to get the chemo in. Additionally, none of those regimens used Rituxan which should improve outcomes significantly. My attending, who has over 20 years of experience with lymphomas, would use R-CHOP."
"The radiation is a different story. I'm not sure how big the tumor was before starting chemo, but we tend to use radiation if it was big. We would probably use 6 cycles of R-CHOP followed by radiation. The drawbacks to radiation are that it can cause future health problems, such as early coronary heart disease, damage to the lungs, etc., although they carefully monitor how much radiation you actually receive. It seems that your doctor is using an extra 2 cycles of RCHOP in lieu of radiation because you're young and he doesn't want to cause long term problems with radiation. Difficult to say if this is right or wrong because we don't have the studies to tell us. These are more subtleties of medicine which you can argue for either side. I can only tell you what my attendings or I would do."
Again, I felt reassured after this explanation, as I remember that my doctor specifically stated he would prefer that we try chemo instead of surgery or radiation because I'm still young and both have such damaging long-term effects.
Sunday, April 26, 2009
Hair Loss, Part II
I've decided that I won't look half-bad as a bald chick.
And my new look is slowly coming together.
My recommendations regarding hair loss to those who are starting chemo:
1. Don't do what I did and pay 60 euros to a top-stylist to get all your hair chopped short, unless you have plenty of money to burn. It is good to get it chopped short, but get a friend to do it for free because it turns out that the hair, if it's going to fall out (for some people, it doesn't), tends to shed like crazy already between the 12th and 18th day of the first chemo treatment. This usually happens most noticeably in the shower.
2. When this starts to happen, start immediately planning your new on-treatment look. I procrastinated a bit too long and ended up not washing my hair for DAYS because I didn't have my new look ready and still wanted to go out in public as a normal person and not as a cancer patient.
3. I highly recommend going to a neighborhood salon to get a complete shave (explain your situation and ask them if they can do something for you after-hours with the curtains closed; maybe you'll find it's no big deal, but it could also be more traumatic than you expect) or get someone to help you do it at home. I didn't go to a salon because I had already spent 60 euros on my hair just a few weeks before and figured that it wouldn't be so bad to have the hair fall out when it was so short. True that the shorter hair probably helped, but I still had way more hair to lose than I expected, as I didn't get a military buzz cut. I still had layered hair in the front down to my chin: a very stylish cut that lasted in its original form approximately 1 week.
4. I regretted not going bald sooner because my hair kept falling out in my bed and on the bathroom floor and in my food. Ugh. Also, when it does come out in the shower (and especially after not washing your hair for 4 days so that the hair is really READY to dive out of your scalp), it feels extremely creepy for it to clump up in your hand and get stuck to your body and pile up on the shower floor. I didn't cry, but I did have to recite all the things I was grateful for and keep my eyes closed while almost all of the rest of my hair fell out. I also had to take three showers in a row and emerge with lobster-red skin and pruney fingers at the end.
5. I found out that high-quality wigs are not hot and itchy like the wigs you buy at the costume store for Halloween. They are also very expensive (500-600 euros here in Amsterdam) and my insurance only covers 250 of that. I tried on a bunch; they all looked a little weird to me, especially on top, but I might be able to style them so they look more natural. We narrowed it down to three choices at the wig shop, one of which I wanted to see in a darker color, and they will come to my apartment for free after it arrives so I can try on the three again. I was told that shorter wigs are generally better because they are far less likely to get caught on things like sofas and jacket zippers. You apparently have to be really careful that they don't get pulled off or twisted.
6. But, there's also another cool option that was invented in Amsterdam, of all places! (lucky me again!) It's called a toupim: www.toupim.nl (you can click on a link on the home page for an English translation of the site) and it only costs 95 euros compared to the 500+ for a full wig. I had a lot of fun with this because I narrowed my options down to four and then emailed all my female friends to have them vote on which look they thought would suit me best. It was great because I got all kinds of advice and found out about clip-on hair extensions (http://www.headkandy.com/), which aren't too expensive and that I can add to my toupim when I'm feeling in the mood for a little jazzy color. I can attest to the fact that the hair is high quality and the hair band is very comfortable. I wish there was a little more hair framing the face in the style that I got (half-long Jasmijn) but I'm hoping that the hair extensions will help with that when I get them. Also, I must say that the customer service has been impeccable. I ordered my toupim online on a Friday evening, and it arrived special delivery (the owner apparently biked it over on her way home from work) one hour later. I emailed on Sunday if I could exchange it for a different size and the owner emailed me back the same night to say that would be fine; she'll drop by tomorrow to perform the exchange.
7. I fully intend to shave the rest of my hair off myself as soon as I get my wig (it's supposed to come today). Lurking on the Young Survivor's Coalition website (it's targeted for breast cancer survivors, but I find it helpful anyway), I learned that once you shave it, there will be stubble and the best way to clean off the stubble is with a lint roller!
And my new look is slowly coming together.
My recommendations regarding hair loss to those who are starting chemo:
1. Don't do what I did and pay 60 euros to a top-stylist to get all your hair chopped short, unless you have plenty of money to burn. It is good to get it chopped short, but get a friend to do it for free because it turns out that the hair, if it's going to fall out (for some people, it doesn't), tends to shed like crazy already between the 12th and 18th day of the first chemo treatment. This usually happens most noticeably in the shower.
2. When this starts to happen, start immediately planning your new on-treatment look. I procrastinated a bit too long and ended up not washing my hair for DAYS because I didn't have my new look ready and still wanted to go out in public as a normal person and not as a cancer patient.
3. I highly recommend going to a neighborhood salon to get a complete shave (explain your situation and ask them if they can do something for you after-hours with the curtains closed; maybe you'll find it's no big deal, but it could also be more traumatic than you expect) or get someone to help you do it at home. I didn't go to a salon because I had already spent 60 euros on my hair just a few weeks before and figured that it wouldn't be so bad to have the hair fall out when it was so short. True that the shorter hair probably helped, but I still had way more hair to lose than I expected, as I didn't get a military buzz cut. I still had layered hair in the front down to my chin: a very stylish cut that lasted in its original form approximately 1 week.
4. I regretted not going bald sooner because my hair kept falling out in my bed and on the bathroom floor and in my food. Ugh. Also, when it does come out in the shower (and especially after not washing your hair for 4 days so that the hair is really READY to dive out of your scalp), it feels extremely creepy for it to clump up in your hand and get stuck to your body and pile up on the shower floor. I didn't cry, but I did have to recite all the things I was grateful for and keep my eyes closed while almost all of the rest of my hair fell out. I also had to take three showers in a row and emerge with lobster-red skin and pruney fingers at the end.
5. I found out that high-quality wigs are not hot and itchy like the wigs you buy at the costume store for Halloween. They are also very expensive (500-600 euros here in Amsterdam) and my insurance only covers 250 of that. I tried on a bunch; they all looked a little weird to me, especially on top, but I might be able to style them so they look more natural. We narrowed it down to three choices at the wig shop, one of which I wanted to see in a darker color, and they will come to my apartment for free after it arrives so I can try on the three again. I was told that shorter wigs are generally better because they are far less likely to get caught on things like sofas and jacket zippers. You apparently have to be really careful that they don't get pulled off or twisted.
6. But, there's also another cool option that was invented in Amsterdam, of all places! (lucky me again!) It's called a toupim: www.toupim.nl (you can click on a link on the home page for an English translation of the site) and it only costs 95 euros compared to the 500+ for a full wig. I had a lot of fun with this because I narrowed my options down to four and then emailed all my female friends to have them vote on which look they thought would suit me best. It was great because I got all kinds of advice and found out about clip-on hair extensions (http://www.headkandy.com/), which aren't too expensive and that I can add to my toupim when I'm feeling in the mood for a little jazzy color. I can attest to the fact that the hair is high quality and the hair band is very comfortable. I wish there was a little more hair framing the face in the style that I got (half-long Jasmijn) but I'm hoping that the hair extensions will help with that when I get them. Also, I must say that the customer service has been impeccable. I ordered my toupim online on a Friday evening, and it arrived special delivery (the owner apparently biked it over on her way home from work) one hour later. I emailed on Sunday if I could exchange it for a different size and the owner emailed me back the same night to say that would be fine; she'll drop by tomorrow to perform the exchange.
7. I fully intend to shave the rest of my hair off myself as soon as I get my wig (it's supposed to come today). Lurking on the Young Survivor's Coalition website (it's targeted for breast cancer survivors, but I find it helpful anyway), I learned that once you shave it, there will be stubble and the best way to clean off the stubble is with a lint roller!
Saturday, April 25, 2009
Identity
I have a new identity now: cancer patient. I've only been a cancer patient for less than a month, but already I feel as though this identity has taken over my life. Almost every minute of every day is occupied with cancer: preparing myself for treatment, taking medications, answering people's questions, sending updates, researching on the internet, planning healthy anti-cancer meals, making appointments, going to appointments, fighting side effects. Every phone caller and emailer wants to know how I'm doing with the treatment. Every invitation to do something has to be checked against my chemo schedule and weighed against the risk of overfatigue and catching an infection. The only escapes from cancer, cancer, cancer are sleep, movies, and books.
The worst part is that even after I'm cured, I'll always be a cancer survivor. I'll never be able to blithely eat a piece of barbequed chicken again without worrying about the carcinogens. All of my lifestyle decisions will be made with the risk of recurrence on my mind. I'll have to worry about job discrimination and health insurance, and possibly also how to adapt to chronic long-term effects of chemo and radiation. Many survivors report both chemo side effects that persist long after chemo is over, such as fatigue and cognitive problems. And almost everyone reports that they were changed permanently by the experience, although many seem to say that they are changed for the better. I hope I will be able to say that in the end.
The cancer patient identity feels different from my other identities, as an Asian-American female, as a snowboarder, as an expat, as a manager, as a daughter, as a sister. I'm not aware of those identities all the time. I only really feel them when I am facing discrimination, or with snowboarders, or with other expats, or at work, or with my family. But being a cancer patient feels like a 24-7 role. I'm obsessed with it at the moment. Even as I'm watching a movie or a book, in the back of my mind, I'm still very conscious that I'm doing it purposely to distract myself from my condition. And if cancer or chronic illness or death from illness is mentioned in the movie or book, then my brain automatically starts comparing how the character's situation is similar or different to mine.
It's hard to believe that one month ago, I didn't even know what non-Hodgkin's lymphoma was.
The worst part is that even after I'm cured, I'll always be a cancer survivor. I'll never be able to blithely eat a piece of barbequed chicken again without worrying about the carcinogens. All of my lifestyle decisions will be made with the risk of recurrence on my mind. I'll have to worry about job discrimination and health insurance, and possibly also how to adapt to chronic long-term effects of chemo and radiation. Many survivors report both chemo side effects that persist long after chemo is over, such as fatigue and cognitive problems. And almost everyone reports that they were changed permanently by the experience, although many seem to say that they are changed for the better. I hope I will be able to say that in the end.
The cancer patient identity feels different from my other identities, as an Asian-American female, as a snowboarder, as an expat, as a manager, as a daughter, as a sister. I'm not aware of those identities all the time. I only really feel them when I am facing discrimination, or with snowboarders, or with other expats, or at work, or with my family. But being a cancer patient feels like a 24-7 role. I'm obsessed with it at the moment. Even as I'm watching a movie or a book, in the back of my mind, I'm still very conscious that I'm doing it purposely to distract myself from my condition. And if cancer or chronic illness or death from illness is mentioned in the movie or book, then my brain automatically starts comparing how the character's situation is similar or different to mine.
It's hard to believe that one month ago, I didn't even know what non-Hodgkin's lymphoma was.
Thursday, April 23, 2009
If it's not one thing, it's another: Part II
It's my last day of Chemo, Round 1. Tomorrow I begin anew. A good time to fill in the remaining details of the first cycle.
Day 18: Heavy cough leading to sleeplessness, slight neuropathy (my arm falling asleep a few times)
Day 19: Heavy cough leading to sleeplessness, slight neuropathy, major hair loss (you don't realize how vain you are, until you lose more than half your volume of hair in the shower)
Day 20: Heavy cough leading to sleeplessness, more shedding
Day 21: More shedding, still coughing, and menstrual cramps! 4 days late. Some people lose their periods during chemo. Of course, that's just about the only side effect I didn't have during this cycle.
In other words, I haven't had a day without some sort of symptom since around March 15 -- March 1, if you count the lump.
Day 18: Heavy cough leading to sleeplessness, slight neuropathy (my arm falling asleep a few times)
Day 19: Heavy cough leading to sleeplessness, slight neuropathy, major hair loss (you don't realize how vain you are, until you lose more than half your volume of hair in the shower)
Day 20: Heavy cough leading to sleeplessness, more shedding
Day 21: More shedding, still coughing, and menstrual cramps! 4 days late. Some people lose their periods during chemo. Of course, that's just about the only side effect I didn't have during this cycle.
In other words, I haven't had a day without some sort of symptom since around March 15 -- March 1, if you count the lump.
Sunday, April 19, 2009
If it's not one thing, it's another
It's Day 17 after my first chemo. Every day, I have a different set of side effects and symptoms. There's always at least one thing happening with my body although after Day 9, the problems became more irritating than serious.
Here's a record of my side effects and symptoms starting from Day 1 of Chemo #1 (from memory, so the list may be slightly inaccurate):
Day 1: nausea, lightheadedness, fatigue, slight cough, pain at night, breakthrough pain during the day
Day 2: nausea, vomiting, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, slight cough, pain at night, breakthrough pain during the day
Day 3: nausea, vomiting, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, severe weight loss, constipation, slight cough, pain at night, breakthrough pain during the day
Day 4: nausea, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, constipation, slight cough, breakthrough pain during the day, mouth sores
Day 5: nausea, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, mouth sores
Day 6: nausea, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, mouth sores
Day 7: nausea, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, mouth sores
Day 8: nausea, loss of appetite, fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, mouth sores
Day 9: slight nausea, slight loss of appetite, slight fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, frequent burping and belching
Day 10: slight fatigue, strange-tasting saliva, slight cough, frequent burping and belching
Day 11: strange-tasting saliva, slight cough, frequent burping and belching
Day 12: heavy productive cough, heavy sniffling, less frequent burping and belching
Day 13: heavy productive cough, heavy sniffling, less frequent burping and belching
Day 14: heavy productive cough, heavy sniffling
Day 15: heavy productive cough, heavy sniffling
Day 16: heavy productive cough, heavy sniffling, mouth sore
Day 17: heavy productive cough, heavy sniffling, mouth sore
Days 18-21: what next?!
The nausea and loss of appetite were the worst side effects. I was afraid I would never enjoy food again, and I have always been one of those people who finds food one of the biggest pleasures in life.
Weirdly enough, the burping and belching was a close third. I was burping in continuous streams almost all day. My speech was studded with tiny burps, punctuated with an occasional hearty belch. On the days when I was both nauseous and burping, I could smell and taste the food I ate earlier in the day, but in a more toxic form, in the same way that a bag full of garbage that has been sitting in the sun releases a ripened odor of the leftover food that is in it. The involuntary constriction of the throat muscles is the same constriction that happens when vomiting, so every time I burped, I had the feeling that I was vomiting little bursts of noxious gas. This was especially true while my saliva still tasted strange; I was convinced that both my breath and burps smelled bad. Once my saliva became less alien, I was more able to appreciate the ridiculousness of it all and pictured myself as a comic strip character with blank conversation bubbles appearing and disappearing above my head.
During the burping period, I must have had a constantly startled look on my face. Imagine having irregularly-spaced hiccups for four days straight. Besides that, the burping was so impolite and so unhideable that I didn't want to go out in public. I didn't want to explain to complete strangers or (even worse!) to acquaintances who had no idea of my current health issues: "Sorry, I have cancer and burping seems to be one of the lesser-known side effects of my chemotherapy treatment" Or not explain and feel their curious or disgusted stares on my back. Only uncontrollable farting would be more humiliating.
The coughing and sniffling are also somewhat interesting items on the list. They are not cancer symptoms or side effects of the chemo. They are symptoms of a cold that became worse due to one of the side effects of chemo.
I had a minor cold since a few weeks before the start of treatment. In fact, I think that I caught it around the same time that I discovered the lump in my chest, which means that I've had it now for 7 weeks. Although it was always present, I barely noticed it because I had other things to worry about. Of all the "children", it was the quietest and easiest to ignore. But now, it's active and clamoring for attention. The symptoms worsened considerably in the past few days. Especially in the mornings and evenings, I now have violent coughing fits that sometimes last for several minutes and bring tears to my eyes. I've already blown my nose through two boxes of tissues. The cold became strong because my immune system is weak.
In every chemo cycle, there is always a predictable dip in white blood cell count, which the Dutch name the "dip period". The literature I received from the hospital estimates that the dip period will occur roughly between the 10th and 15th days after each chemo infusion. Strangely enough, the Americans seem to believe that this period, which they don't seem to have an official name for, occurs between the 7th and 10th day. Is there a difference in the chemo dosages that could result in differences in cycle characteristics?
During the dip period, I am more vulnerable to infection. I am to avoid going to places where large groups of people congregate, taking public transportation, accepting fresh flowers, or doing anything that could result in a cut or a scrape. I am also to avoid eating: raw meat, raw fish, raw tofu, undercooked egg (e.g., no sunny-side ups), peanuts, certain cheeses, unpasteurized dairy products, homemade jams, any raw vegetables or fruit that are unwashed or difficult to properly wash (such as broccoli), fresh salads prepared in restaurants. It's hard not to become paranoid. I guess it's not so bad; otherwise, my doctors would force me to live in a plastic bubble.
Here's a record of my side effects and symptoms starting from Day 1 of Chemo #1 (from memory, so the list may be slightly inaccurate):
Day 1: nausea, lightheadedness, fatigue, slight cough, pain at night, breakthrough pain during the day
Day 2: nausea, vomiting, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, slight cough, pain at night, breakthrough pain during the day
Day 3: nausea, vomiting, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, severe weight loss, constipation, slight cough, pain at night, breakthrough pain during the day
Day 4: nausea, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, constipation, slight cough, breakthrough pain during the day, mouth sores
Day 5: nausea, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, mouth sores
Day 6: nausea, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, mouth sores
Day 7: nausea, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, mouth sores
Day 8: nausea, loss of appetite, fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, mouth sores
Day 9: slight nausea, slight loss of appetite, slight fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, frequent burping and belching
Day 10: slight fatigue, strange-tasting saliva, slight cough, frequent burping and belching
Day 11: strange-tasting saliva, slight cough, frequent burping and belching
Day 12: heavy productive cough, heavy sniffling, less frequent burping and belching
Day 13: heavy productive cough, heavy sniffling, less frequent burping and belching
Day 14: heavy productive cough, heavy sniffling
Day 15: heavy productive cough, heavy sniffling
Day 16: heavy productive cough, heavy sniffling, mouth sore
Day 17: heavy productive cough, heavy sniffling, mouth sore
Days 18-21: what next?!
The nausea and loss of appetite were the worst side effects. I was afraid I would never enjoy food again, and I have always been one of those people who finds food one of the biggest pleasures in life.
Weirdly enough, the burping and belching was a close third. I was burping in continuous streams almost all day. My speech was studded with tiny burps, punctuated with an occasional hearty belch. On the days when I was both nauseous and burping, I could smell and taste the food I ate earlier in the day, but in a more toxic form, in the same way that a bag full of garbage that has been sitting in the sun releases a ripened odor of the leftover food that is in it. The involuntary constriction of the throat muscles is the same constriction that happens when vomiting, so every time I burped, I had the feeling that I was vomiting little bursts of noxious gas. This was especially true while my saliva still tasted strange; I was convinced that both my breath and burps smelled bad. Once my saliva became less alien, I was more able to appreciate the ridiculousness of it all and pictured myself as a comic strip character with blank conversation bubbles appearing and disappearing above my head.
During the burping period, I must have had a constantly startled look on my face. Imagine having irregularly-spaced hiccups for four days straight. Besides that, the burping was so impolite and so unhideable that I didn't want to go out in public. I didn't want to explain to complete strangers or (even worse!) to acquaintances who had no idea of my current health issues: "Sorry, I have cancer and burping seems to be one of the lesser-known side effects of my chemotherapy treatment" Or not explain and feel their curious or disgusted stares on my back. Only uncontrollable farting would be more humiliating.
The coughing and sniffling are also somewhat interesting items on the list. They are not cancer symptoms or side effects of the chemo. They are symptoms of a cold that became worse due to one of the side effects of chemo.
I had a minor cold since a few weeks before the start of treatment. In fact, I think that I caught it around the same time that I discovered the lump in my chest, which means that I've had it now for 7 weeks. Although it was always present, I barely noticed it because I had other things to worry about. Of all the "children", it was the quietest and easiest to ignore. But now, it's active and clamoring for attention. The symptoms worsened considerably in the past few days. Especially in the mornings and evenings, I now have violent coughing fits that sometimes last for several minutes and bring tears to my eyes. I've already blown my nose through two boxes of tissues. The cold became strong because my immune system is weak.
In every chemo cycle, there is always a predictable dip in white blood cell count, which the Dutch name the "dip period". The literature I received from the hospital estimates that the dip period will occur roughly between the 10th and 15th days after each chemo infusion. Strangely enough, the Americans seem to believe that this period, which they don't seem to have an official name for, occurs between the 7th and 10th day. Is there a difference in the chemo dosages that could result in differences in cycle characteristics?
During the dip period, I am more vulnerable to infection. I am to avoid going to places where large groups of people congregate, taking public transportation, accepting fresh flowers, or doing anything that could result in a cut or a scrape. I am also to avoid eating: raw meat, raw fish, raw tofu, undercooked egg (e.g., no sunny-side ups), peanuts, certain cheeses, unpasteurized dairy products, homemade jams, any raw vegetables or fruit that are unwashed or difficult to properly wash (such as broccoli), fresh salads prepared in restaurants. It's hard not to become paranoid. I guess it's not so bad; otherwise, my doctors would force me to live in a plastic bubble.
Another Gratitude List (with Thanks to Anonymous)
I am thankful for the taxes I pay because it means that I have money.
I am thankful for urgent deadlines and office politics because it means that I have a job.
I am thankful for my high rent because it means that I have a roof over my head and a warm bed at night.
I am thankful for the clothes that fit a little too snug because it means I have enough to eat.
I am thankful for the piles of laundry I have to do today because it means I have clothes to wear.
I am thankful for the crying baby in the apartment above me because it means I can hear.
I am thankful for the dark and dreary winter because it means that I can better appreciate spring and summer.
I am thankful for the rains that sweep over Amsterdam on a regular basis because it means that there is lush greenery everywhere in the warm months and that it is snowing somewhere else in Europe in the cold months.
I am thankful for people expressing political viewpoints that I don't agree with because it means we have freedom of speech.
I am thankful for my mother nagging me about what to eat and what to buy because it means that she cares.
I am thankful for my nausea, fatigue, and other chemo side effects, because it means that my cancer is treatable and that I can afford the treatment.
I am thankful for too much e-mail because it means I have friends who are thinking of me.
I am thankful to the anonymous parishoner of Clayfield Baptist Church who wrote the original list that has taught me and many others how to view the glass half FULL.
I am thankful for urgent deadlines and office politics because it means that I have a job.
I am thankful for my high rent because it means that I have a roof over my head and a warm bed at night.
I am thankful for the clothes that fit a little too snug because it means I have enough to eat.
I am thankful for the piles of laundry I have to do today because it means I have clothes to wear.
I am thankful for the crying baby in the apartment above me because it means I can hear.
I am thankful for the dark and dreary winter because it means that I can better appreciate spring and summer.
I am thankful for the rains that sweep over Amsterdam on a regular basis because it means that there is lush greenery everywhere in the warm months and that it is snowing somewhere else in Europe in the cold months.
I am thankful for people expressing political viewpoints that I don't agree with because it means we have freedom of speech.
I am thankful for my mother nagging me about what to eat and what to buy because it means that she cares.
I am thankful for my nausea, fatigue, and other chemo side effects, because it means that my cancer is treatable and that I can afford the treatment.
I am thankful for too much e-mail because it means I have friends who are thinking of me.
I am thankful to the anonymous parishoner of Clayfield Baptist Church who wrote the original list that has taught me and many others how to view the glass half FULL.
Saturday, April 18, 2009
Hair Loss
Today I had a small shock when, after my shower, I noticed there was so much hair blocking the drain that it took a few minutes for the water to disappear. Even when I had long hair, that never happened unless the drain was actually clogged.
Last weekend, I went to a pricey hair salon to have my hair cut very short for the first time in my life. I was nervous, because I always suspected that I would look like a boy with such a cut, but it turned out fine. My hair is now shag-carpet length in the back, stopping at the top of my neck. It's down to my chin in the front, with longish layers framing my face. It's quite a stylish cut.
Before the cut, my hair was super-thick and long, a few inches below my shoulders. I thought it would be too shocking (as well as messy) to have such long hair falling out, and I guess I was right. At least 4/5 of the volume was already cut away, so I can't imagine the hugeness of the hairball that would have been blocking my drain had I not had the haircut. Even with short hair, it was still a shock.
Luckily, having thick hair means that it might take at least a few weeks for it all to fall out. Looking in the mirror today, my hair doesn't look all that different. I read somewhere that the hair on my head will go first, then the eyebrows and the rest of my body. I'll be like a shorn sheep in a month or two. My insurance will pay for a wig, so I'll probably corral some girlfriends into coming with me on a wig-shopping expedition, followed by tea and cake at Taart van Mijn Tante -- a novel way to spend a Saturday afternoon in Amsterdam.
As I write this, I wonder if there would a market for a deck of cards called "52 Ways to Have Fun with Cancer". Decorate crackers with Cheeze Whiz smiley faces! For those days when you are too nauseous to eat anything else. Make art installations with all your hair that falls out! Cancer's a great opportunity to develop your creativity. Try tossing your pills in the air and catching them in your mouth! It's an exercise you can even do in bed.
3 down, only 49 more cards to think up.
Last weekend, I went to a pricey hair salon to have my hair cut very short for the first time in my life. I was nervous, because I always suspected that I would look like a boy with such a cut, but it turned out fine. My hair is now shag-carpet length in the back, stopping at the top of my neck. It's down to my chin in the front, with longish layers framing my face. It's quite a stylish cut.
Before the cut, my hair was super-thick and long, a few inches below my shoulders. I thought it would be too shocking (as well as messy) to have such long hair falling out, and I guess I was right. At least 4/5 of the volume was already cut away, so I can't imagine the hugeness of the hairball that would have been blocking my drain had I not had the haircut. Even with short hair, it was still a shock.
Luckily, having thick hair means that it might take at least a few weeks for it all to fall out. Looking in the mirror today, my hair doesn't look all that different. I read somewhere that the hair on my head will go first, then the eyebrows and the rest of my body. I'll be like a shorn sheep in a month or two. My insurance will pay for a wig, so I'll probably corral some girlfriends into coming with me on a wig-shopping expedition, followed by tea and cake at Taart van Mijn Tante -- a novel way to spend a Saturday afternoon in Amsterdam.
As I write this, I wonder if there would a market for a deck of cards called "52 Ways to Have Fun with Cancer". Decorate crackers with Cheeze Whiz smiley faces! For those days when you are too nauseous to eat anything else. Make art installations with all your hair that falls out! Cancer's a great opportunity to develop your creativity. Try tossing your pills in the air and catching them in your mouth! It's an exercise you can even do in bed.
3 down, only 49 more cards to think up.
Thursday, April 16, 2009
The Gratitude List
I'll probably keep updating this, as time goes on:
1. The cancer is treatable. The chemo works by attacking the fastest dividing cells in my body first (which is why people lose their hair). My cancer is especially treatable compared to other cancers because the tumor was growing so quickly. My brother told me, "the faster it grows, the faster it will shrink". And he was right. The lump had appeared seemingly overnight, and the lump had also disappeared seemingly overnight -- already after Day 3 of my first chemo treatment. There are also so-called "indolent" forms of non-Hodgkin's, and other cancers are typically slower-dividing as well, but luckily my cancer cells are workaholic.
2. The cancer was caught before I had any late-stage symptoms. I was able to schedule medical appointments quickly and the diagnosis was clear -- no ambiguous symptoms that would force me to spend months getting tests.
3. I have gotten so many great emails from friends and family around the world, offering their love and support. I'm so glad I told people about this, because I really feel that I've learned a lot about my friends, especially, in the process. I didn't know that some of my friends have cancer survivors in their families; my friend's mother was diagnosed last year and I had no idea (apparently, she was diagnosed in June and by February was already rollin' the dice in Vegas with her son).
4. My mother and brothers immediately made plans to visit. My mother has been here since April 8 and has been taking good care of me with lots of amazing healthy meals. If it weren't for her, I'm sure I would have lost more than just 2 kilos post-chemo. Not only have I been eating well, but I've also learned a lot about how to prepare meals so I can keep eating great even after my treatment is over. She’ll be here with me until April 22, when my brother Eric takes over. He’s staying until May 1. My other brother Ed is coming in mid-May. None of these family members had plans to visit this year otherwise.
5. My brother's an oncologist, so I’ve gotten a lot of reassurance and helpful advice from him.
6. My doctor here seems kind and competent and very experienced.
7. A good friend back from my days in public health happens to be a bonafide expert in cancer-related nutrition and has given me loads of information on what I can, should, or shouldn’t eat.
8. Amsterdam is a good place to become sick. Unlimited sick days, and no penalty for taking them. My coworkers and even upper management came by to tell me that I shouldn’t think like an American in this case – that I should make my health my number one priority and no one would question my commitment to work if I were to just take the entire 6 months off (I plan to do some work, actually, but on a limited basis). Besides that, I don’t have to get a prescription for marijuana to alleviate nausea here. I can just walk a few blocks to the neighborhood coffeeshop.
9. The weather here has turned beautiful and warm. It stays light until almost 8am and city has really come alive. This is the best time of year to be in Amsterdam, and it’s almost impossible to stay in a bad mood, let alone become depressed.
10. The timing of this thing was unbelievable. If I were to get it at any time in my life, this would be the perfect time. Young enough to recover quickly from the treatment, old enough to have coping skills and money. Long enough in Amsterdam to have developed a support network and understand some Dutch (useful for dealing with the medical system). Just after the end of snowboarding season and before I had scheduled any other trips that would have required cancellation of plane tickets. And just after finishing several major work projects with urgent deadlines. And during the spring, so that my 6 months of treatment fall right in the space between 2 snowboarding seasons and during the time when I don't mind so much being stuck in Amsterdam.
11. I have health insurance. So many people in the U.S. do not.
12. I won't be confined to bed for most of treatment. I can still enjoy life. I can still eat chocolate and ice cream! My mind still works just fine and all my limbs still work.
13. I get to catch up on books & DVDs.
14. I've learned a lot about nutrition that will help me even after the treatment is over.
15. I live walking distance from the supermarket, nightmarket, and a huge open-air market, as well as the chocolate/ice cream shop.
16. The view outside my window is lovely, of a city park and old Amsterdam houses and a little bit of the canal too. And when I open the floor-to-ceiling doors for fresh air, it's even nicer.
17. My apartment is also a nice place to spend the whole day, and I have a nice entertainment system (including Wii) for whiling away the hours.
18. It wouldn't hurt me to lose a few pounds anyway. :-)
19. The pain from the cancer is already nearly gone (no need for painkillers since Day 3 post chemo), and I can sleep through most of the night without any problems.
20. I still get to enjoy exploring new places, but just not so far away. The other day, I went to Amstelhaven and the Amstel Hotel for the first time.
21. Having cancer has made me more empathetic. I can finally really better understand what it means to have a serious illness and certain symptoms. For example, before I had no real grasp of what it is to have serious round-the-clock constipation or nausea. Now, even though I only experienced it for a short time, I realize how horrible it would be to suffer from it constantly, as some do.
22. No more writer's block. I was hardly ever motivated to post in my other blog: "A Snowboarder in Amsterdam", but now, I feel as though my thoughts are running in all-new directions, and I can only clear my brain by writing.
1. The cancer is treatable. The chemo works by attacking the fastest dividing cells in my body first (which is why people lose their hair). My cancer is especially treatable compared to other cancers because the tumor was growing so quickly. My brother told me, "the faster it grows, the faster it will shrink". And he was right. The lump had appeared seemingly overnight, and the lump had also disappeared seemingly overnight -- already after Day 3 of my first chemo treatment. There are also so-called "indolent" forms of non-Hodgkin's, and other cancers are typically slower-dividing as well, but luckily my cancer cells are workaholic.
2. The cancer was caught before I had any late-stage symptoms. I was able to schedule medical appointments quickly and the diagnosis was clear -- no ambiguous symptoms that would force me to spend months getting tests.
3. I have gotten so many great emails from friends and family around the world, offering their love and support. I'm so glad I told people about this, because I really feel that I've learned a lot about my friends, especially, in the process. I didn't know that some of my friends have cancer survivors in their families; my friend's mother was diagnosed last year and I had no idea (apparently, she was diagnosed in June and by February was already rollin' the dice in Vegas with her son).
4. My mother and brothers immediately made plans to visit. My mother has been here since April 8 and has been taking good care of me with lots of amazing healthy meals. If it weren't for her, I'm sure I would have lost more than just 2 kilos post-chemo. Not only have I been eating well, but I've also learned a lot about how to prepare meals so I can keep eating great even after my treatment is over. She’ll be here with me until April 22, when my brother Eric takes over. He’s staying until May 1. My other brother Ed is coming in mid-May. None of these family members had plans to visit this year otherwise.
5. My brother's an oncologist, so I’ve gotten a lot of reassurance and helpful advice from him.
6. My doctor here seems kind and competent and very experienced.
7. A good friend back from my days in public health happens to be a bonafide expert in cancer-related nutrition and has given me loads of information on what I can, should, or shouldn’t eat.
8. Amsterdam is a good place to become sick. Unlimited sick days, and no penalty for taking them. My coworkers and even upper management came by to tell me that I shouldn’t think like an American in this case – that I should make my health my number one priority and no one would question my commitment to work if I were to just take the entire 6 months off (I plan to do some work, actually, but on a limited basis). Besides that, I don’t have to get a prescription for marijuana to alleviate nausea here. I can just walk a few blocks to the neighborhood coffeeshop.
9. The weather here has turned beautiful and warm. It stays light until almost 8am and city has really come alive. This is the best time of year to be in Amsterdam, and it’s almost impossible to stay in a bad mood, let alone become depressed.
10. The timing of this thing was unbelievable. If I were to get it at any time in my life, this would be the perfect time. Young enough to recover quickly from the treatment, old enough to have coping skills and money. Long enough in Amsterdam to have developed a support network and understand some Dutch (useful for dealing with the medical system). Just after the end of snowboarding season and before I had scheduled any other trips that would have required cancellation of plane tickets. And just after finishing several major work projects with urgent deadlines. And during the spring, so that my 6 months of treatment fall right in the space between 2 snowboarding seasons and during the time when I don't mind so much being stuck in Amsterdam.
11. I have health insurance. So many people in the U.S. do not.
12. I won't be confined to bed for most of treatment. I can still enjoy life. I can still eat chocolate and ice cream! My mind still works just fine and all my limbs still work.
13. I get to catch up on books & DVDs.
14. I've learned a lot about nutrition that will help me even after the treatment is over.
15. I live walking distance from the supermarket, nightmarket, and a huge open-air market, as well as the chocolate/ice cream shop.
16. The view outside my window is lovely, of a city park and old Amsterdam houses and a little bit of the canal too. And when I open the floor-to-ceiling doors for fresh air, it's even nicer.
17. My apartment is also a nice place to spend the whole day, and I have a nice entertainment system (including Wii) for whiling away the hours.
18. It wouldn't hurt me to lose a few pounds anyway. :-)
19. The pain from the cancer is already nearly gone (no need for painkillers since Day 3 post chemo), and I can sleep through most of the night without any problems.
20. I still get to enjoy exploring new places, but just not so far away. The other day, I went to Amstelhaven and the Amstel Hotel for the first time.
21. Having cancer has made me more empathetic. I can finally really better understand what it means to have a serious illness and certain symptoms. For example, before I had no real grasp of what it is to have serious round-the-clock constipation or nausea. Now, even though I only experienced it for a short time, I realize how horrible it would be to suffer from it constantly, as some do.
22. No more writer's block. I was hardly ever motivated to post in my other blog: "A Snowboarder in Amsterdam", but now, I feel as though my thoughts are running in all-new directions, and I can only clear my brain by writing.
Tuesday, April 7, 2009
Fighting Nausea
I'm never hungry anymore, but I think about food all the time.
It's like I'm the worried parent and the sick kid at the same time. I know I have to keep my weight up, so I (the worried parent) plot what I'm going to make for myself (the sick kid) that won't trigger extreme nausea. Planning and preparing the food has become a necessary chore, like brushing my teeth. Usually, once I start eating, the food tastes good. Sometimes it stings a little; they warned me about mouth sores at the hospital. I still need to make an appointment with the cancer-specialized dental hygienist about that.
After a few vomiting episodes over the weekend, despite the strong anti-nausea medication I was taking, I wised up and searched the internet for articles on nausea. It turns out that it's better to eat smaller meals more frequently, eat slowly, not mix hot and cold foods, eat blander foods, and drink ice water. In general, cold food is better than hot. These tips helped a lot.
The nurse at the hospital had also emphasized that I had to be careful not to get trapped in the downward spiral of not eating because of nausea, as that just leads to more nausea, when the stomach continues to contract in expectation of food. She was right. A few times, when I was feeling most nauseous, I forced myself to eat just a small amount of food and felt instantly better.
My staple foods, for the moment, are blueberries and raspberries with muesli mix and soy milk in the morning. A mango later in the morning. Rice porridge with a few add-ins for flavor. I managed to work in some leftover Thai food, although it made me sick the other day, and it was all right. I do worry that, after 6 months of this, I'll never be able to enjoy a blueberry again. But I suppose that's a small price to pay for the honor of calling myself a cancer survivor.
It's like I'm the worried parent and the sick kid at the same time. I know I have to keep my weight up, so I (the worried parent) plot what I'm going to make for myself (the sick kid) that won't trigger extreme nausea. Planning and preparing the food has become a necessary chore, like brushing my teeth. Usually, once I start eating, the food tastes good. Sometimes it stings a little; they warned me about mouth sores at the hospital. I still need to make an appointment with the cancer-specialized dental hygienist about that.
After a few vomiting episodes over the weekend, despite the strong anti-nausea medication I was taking, I wised up and searched the internet for articles on nausea. It turns out that it's better to eat smaller meals more frequently, eat slowly, not mix hot and cold foods, eat blander foods, and drink ice water. In general, cold food is better than hot. These tips helped a lot.
The nurse at the hospital had also emphasized that I had to be careful not to get trapped in the downward spiral of not eating because of nausea, as that just leads to more nausea, when the stomach continues to contract in expectation of food. She was right. A few times, when I was feeling most nauseous, I forced myself to eat just a small amount of food and felt instantly better.
My staple foods, for the moment, are blueberries and raspberries with muesli mix and soy milk in the morning. A mango later in the morning. Rice porridge with a few add-ins for flavor. I managed to work in some leftover Thai food, although it made me sick the other day, and it was all right. I do worry that, after 6 months of this, I'll never be able to enjoy a blueberry again. But I suppose that's a small price to pay for the honor of calling myself a cancer survivor.
Day 5 of the First Chemo Cycle
The magic of Day 5. This afternoon I forced down my last pills of this cycle and told myself I was "a good girl" since no one else was around to witness the heroic act.
I still feel queasy and tired. I slept almost 12 hours last night. The weird taste in my mouth, like an extra thin layer of alien mucous coating my tongue and cheeks and teeth, is still there. I feel fragile, but that could be a result of staying in bed for almost 3 days and losing 2 kilos.
I had a not-so-ambitious list of things to do, and then proceeded to do even less than what was on the list. I managed to walk to the mail box to send my DVDs back to DVDPost (decided that I could and should watch the ending of Sweeney Todd after my 6 months of treatment are up). I also managed to walk a bit further to the pharmacist, to ask if they had gelcaps to hide the bitter flavor of prednisolone that I dreaded taking every day. The woman and the man behind the desk looked at each other and laughed. I somewhat expected the reaction, but it still hurt. I'll readily admit that the Dutch are tougher than we Americans. If I want easy-to-swallow, nice-tasting medicine, I always look for American brands. Still, I can't help feeling that the Dutch who take the attitude of 'grin and bear it' suffer unnecessarily more than they need to. The chemo treatment is bad enough; I'm going to do everything I can to make it more bearable.
On the way back from that unsuccessful mission, I passed a bakery which smelled delicious. But when I went inside, I found the sights and smells overwhelming and backed out again. Then I tried the chocolaterie. Thankfully, the strong chocolate smell still smelled good and didn't make me queasier. I was thinking that chocolate might be a way to fatten me up again. Ironic: I spent the whole past year trying in vain to lose a few pounds, but I found that the 'accomplishment' of this goal in just a few days time so alarming that I'm now set on trying to reverse the trend. Unfortunately, in my light-headed state, I had managed to leave the apartment without my wallet. So the chocolates are still in the store, but I'll go back shortly to pick them up.
Tonight I have a ticket to see Ojos de Brujos, a ticket that I bought months ago. I plan to go, although I'm not convinced it's a wise idea. I seem to be unusually sensitive to sights and sounds and smells. Usually I like to have background noise, such as iTunes or the television, as I clean up around the apartment or fix a meal. But in the last 2 days, I've preferred quiet indoors. It's nice to hear the birds outside and the shouts of the kids in the neighborhood playing in the park. I noticed on my walk today that some trees have sprouted green. Spring is really here at last.
I still feel queasy and tired. I slept almost 12 hours last night. The weird taste in my mouth, like an extra thin layer of alien mucous coating my tongue and cheeks and teeth, is still there. I feel fragile, but that could be a result of staying in bed for almost 3 days and losing 2 kilos.
I had a not-so-ambitious list of things to do, and then proceeded to do even less than what was on the list. I managed to walk to the mail box to send my DVDs back to DVDPost (decided that I could and should watch the ending of Sweeney Todd after my 6 months of treatment are up). I also managed to walk a bit further to the pharmacist, to ask if they had gelcaps to hide the bitter flavor of prednisolone that I dreaded taking every day. The woman and the man behind the desk looked at each other and laughed. I somewhat expected the reaction, but it still hurt. I'll readily admit that the Dutch are tougher than we Americans. If I want easy-to-swallow, nice-tasting medicine, I always look for American brands. Still, I can't help feeling that the Dutch who take the attitude of 'grin and bear it' suffer unnecessarily more than they need to. The chemo treatment is bad enough; I'm going to do everything I can to make it more bearable.
On the way back from that unsuccessful mission, I passed a bakery which smelled delicious. But when I went inside, I found the sights and smells overwhelming and backed out again. Then I tried the chocolaterie. Thankfully, the strong chocolate smell still smelled good and didn't make me queasier. I was thinking that chocolate might be a way to fatten me up again. Ironic: I spent the whole past year trying in vain to lose a few pounds, but I found that the 'accomplishment' of this goal in just a few days time so alarming that I'm now set on trying to reverse the trend. Unfortunately, in my light-headed state, I had managed to leave the apartment without my wallet. So the chocolates are still in the store, but I'll go back shortly to pick them up.
Tonight I have a ticket to see Ojos de Brujos, a ticket that I bought months ago. I plan to go, although I'm not convinced it's a wise idea. I seem to be unusually sensitive to sights and sounds and smells. Usually I like to have background noise, such as iTunes or the television, as I clean up around the apartment or fix a meal. But in the last 2 days, I've preferred quiet indoors. It's nice to hear the birds outside and the shouts of the kids in the neighborhood playing in the park. I noticed on my walk today that some trees have sprouted green. Spring is really here at last.
Monday, April 6, 2009
Constipation
I never realized how debilitating constipation could be.
I thought it was just a problem of not shitting for a few days.
What's far worse is when your body still, against your will, wants to expel its waste. But now it feels like the waste is a compact solid mass 5 times wider than the straw hole it's supposed to push through, and with little glass shards and pebbles buried within it. Is there anything less dignifying than squirming, shouting, crying on the toilet seat for two hours in the middle of the night in order to eject a little ball of shit the size of a mouse pellet?
I'm surprised the neighbors have not come by this morning to ask "what the @#$%?!"
There's a mad woman haunting their building.
I thought it was just a problem of not shitting for a few days.
What's far worse is when your body still, against your will, wants to expel its waste. But now it feels like the waste is a compact solid mass 5 times wider than the straw hole it's supposed to push through, and with little glass shards and pebbles buried within it. Is there anything less dignifying than squirming, shouting, crying on the toilet seat for two hours in the middle of the night in order to eject a little ball of shit the size of a mouse pellet?
I'm surprised the neighbors have not come by this morning to ask "what the @#$%?!"
There's a mad woman haunting their building.
What to Say to Someone Who Has Cancer
I never get tired of hearing: "I'm so sorry to hear that", "That sucks", and most of all "Let me know if there's anything I can do". I never get tired of hearing "I love you", "Don't hesitate to ask", "Call me any time", and "We're here for you" (or as my friend Clay said "we've got your back!"). I got a little teary when my company human resources person called to say that my health comes first and that work was a very distant second, followed by "Let me know if there's anything I can do."
Anger
Being a lifelong atheist, I'm not angry at God. I'm not angry at fate either. So many others have survived this disease and worse. The fates have been relatively kind to me, I think. I wasn't born a starving child with HIV in Africa, or with Down's Syndrome, or childhood leukemia. I wasn't locked in a cellar by my father and forced to bear his children for 25 years. There are far worse hells on earth.
I am angry at my tumor. It's like an alien creature curled up in my body. I want it OUT. I'm angry at it because I had to cancel my conference trip to Budapest, a snowboarding weekend in Les Arcs, and a sailing trip to Texel. I missed World Pillowfight Day and a Guitar Hero Party. I'm trapped here in Amsterdam for the next 6 months with nothing to look forward to than my next chemo treatment followed by 3 days of writhing and crying in the bathroom. I miss my hair already, even though it hasn't fallen out yet. And I'm angry that this cancer may have ruined thai food for me forever. I enjoyed it last night, but made the mistake of throwing it up in the bathroom sink instead of the toilet, so now the sink is clogged and I still haven't been able to get rid of the sour stench.
I am angry at my tumor. It's like an alien creature curled up in my body. I want it OUT. I'm angry at it because I had to cancel my conference trip to Budapest, a snowboarding weekend in Les Arcs, and a sailing trip to Texel. I missed World Pillowfight Day and a Guitar Hero Party. I'm trapped here in Amsterdam for the next 6 months with nothing to look forward to than my next chemo treatment followed by 3 days of writhing and crying in the bathroom. I miss my hair already, even though it hasn't fallen out yet. And I'm angry that this cancer may have ruined thai food for me forever. I enjoyed it last night, but made the mistake of throwing it up in the bathroom sink instead of the toilet, so now the sink is clogged and I still haven't been able to get rid of the sour stench.
Weight Loss
I weighed myself this morning and was shocked to find that I had lost 2 kilos seemingly overnight. For the past 3 weeks, my weight had been steady at 57 kilos. It's no wonder. I have to force myself to eat, and then I'm afraid to eat too much, because it's likely that I'll just throw it up. The pills and the water make me feel full; I have never drank so much water in my life. In the beginning, it tasted good, but now, even water has a strange and alien flavor. I really hope I get my taste buds back. I miss enjoying food.
Saturday, April 4, 2009
Monday, March 30, 2009
The Treatment
My doctor is a slightly-disheveled busy-looking man, perhaps in his 40s, with round glasses and kind features. He speaks near perfect English and seems very competent. Both Aylee (my Dutch colleague who comes with me to this appointment) and I am relieved.
The treatment is standard R-CHOP chemotherapy, to be administered every 3 weeks for 8 cycles. Thus, 6 months in total. There are usually fewer chemo cycles involved, but my doctor thinks that for a tumor this size, 8 will be required.
After 6 months, I'll get a full CT scan and a bone marrow biopsy, to determine whether there's any cancer still present. If there is, then we'll discuss the possibility of radiation treatment.
The decision of when to receive the bone marrow biopsy resulted in a little mental tussle between me and the doctor. It's standard practice to have one at the start of treatment, but I didn't see the point. The doctor admitted that the results of the biopsy wouldn't change the treatment plan one bit; it would only change prognosis. In general, spread to the bone marrow with this sort of cancer is a rare occurrence. I didn't think it would benefit me much to find out that my prognosis was worse than expected; in fact, it would probably only serve to dampen my spirits. I argued instead to have the biopsy as a check at the end of treatment, and in the end, he agreed.
Because the cancer symptoms seem to be worsening so fast, and I am anxious to start treatment immediately, the doctor also agrees that I can start taking prednisolone along with alluprinol that very day. He schedules my first chemo treatment for Friday, which is the earliest I can get one. I have an appointment with the nurse to discuss the treatment on Thursday morning.
He also very rapidly fills two prescription pad sheets with an arsenal of the drugs that I am to take orally at home.
Prednisolone to kill tumor cells
Slow-release Oxycodon HCl Sandoz for the pain I was having at night
Fast-release OxyNorm, in case the Oxycodon wasn't enough
Kytrol to be taken against nausea and vomiting twice a day for the first 3 days in the chemo cycle
Metoclopramide HCl to be taken as needed for nausea anytime after Chemo Day 3
Magnesium Hydrochloride PCH, for the common side effect of constipation
Allopurinol Sandoz 300, to prevent kidney complications
Then, from the front desk, I get a thick binder listing pages and pages of potential side effects and what can be done to address them, all in Dutch, with a promise that all my other questions will be answered in due time during my Thursday interview with the nurse.
The treatment is standard R-CHOP chemotherapy, to be administered every 3 weeks for 8 cycles. Thus, 6 months in total. There are usually fewer chemo cycles involved, but my doctor thinks that for a tumor this size, 8 will be required.
After 6 months, I'll get a full CT scan and a bone marrow biopsy, to determine whether there's any cancer still present. If there is, then we'll discuss the possibility of radiation treatment.
The decision of when to receive the bone marrow biopsy resulted in a little mental tussle between me and the doctor. It's standard practice to have one at the start of treatment, but I didn't see the point. The doctor admitted that the results of the biopsy wouldn't change the treatment plan one bit; it would only change prognosis. In general, spread to the bone marrow with this sort of cancer is a rare occurrence. I didn't think it would benefit me much to find out that my prognosis was worse than expected; in fact, it would probably only serve to dampen my spirits. I argued instead to have the biopsy as a check at the end of treatment, and in the end, he agreed.
Because the cancer symptoms seem to be worsening so fast, and I am anxious to start treatment immediately, the doctor also agrees that I can start taking prednisolone along with alluprinol that very day. He schedules my first chemo treatment for Friday, which is the earliest I can get one. I have an appointment with the nurse to discuss the treatment on Thursday morning.
He also very rapidly fills two prescription pad sheets with an arsenal of the drugs that I am to take orally at home.
Prednisolone to kill tumor cells
Slow-release Oxycodon HCl Sandoz for the pain I was having at night
Fast-release OxyNorm, in case the Oxycodon wasn't enough
Kytrol to be taken against nausea and vomiting twice a day for the first 3 days in the chemo cycle
Metoclopramide HCl to be taken as needed for nausea anytime after Chemo Day 3
Magnesium Hydrochloride PCH, for the common side effect of constipation
Allopurinol Sandoz 300, to prevent kidney complications
Then, from the front desk, I get a thick binder listing pages and pages of potential side effects and what can be done to address them, all in Dutch, with a promise that all my other questions will be answered in due time during my Thursday interview with the nurse.
Saturday, March 28, 2009
My Brother, the Oncologist
Am I lucky or unlucky?
Unlucky to have spun the wheel of life and landed on Cancer. Lucky that my lot goes hand in hand with my younger brother's chosen profession. Not only is he a doctor, but he's a specialist in oncology.
He was the first person besides my manager and direct reports I told about my diagnosis. And he was instantly 100% there for me.
I don't know why I was surprised. I suppose I was used to seeing my brother the way I remembered him when we were kids. Building forts out of the sofa cushions, watching Kung Fu Theater on Saturday afternoons, playing ping pong in the basement, shoveling the driveway. We are 6 years apart in age, so I never went to high school with him. I hardly saw him in the college and graduate school years, when I was living in Boston and Ann Arbor. In fact, even when I moved to the Bay Area, and he was living in San Francisco, our paths didn't cross too often, except during holidays when my parents came out to visit. I saw my other brother Eric much more frequently in the same period. Not only were Eric and I closer in age, but since I introduced his best friend to his now-wife, I was often invited to their group's social functions.
After almost a year of little communication, I emailed him about my diagnosis. I saw his response the next morning. Among other things, he wrote: "Well this is pretty shocking for me even though I deal with lymphoma on a daily basis...Personally, I would think it would be better for you to receive treatment closer to family. Whether that would involve some of us going over there or you coming here I'm sure we could all work out...Call me at ANY time". And he signed the letter with "Love". I was struck by that, for some reason, because I have always thought of Ed as the reserved one of us. I was also suddenly hit by the fact that Ed is an adult now (when did this happen?!), and is responsible for the care of a lot of other patients, like me. It's a bigger responsibility than I could ever imagine having in my life, and I am very proud of him.
Unlucky to have spun the wheel of life and landed on Cancer. Lucky that my lot goes hand in hand with my younger brother's chosen profession. Not only is he a doctor, but he's a specialist in oncology.
He was the first person besides my manager and direct reports I told about my diagnosis. And he was instantly 100% there for me.
I don't know why I was surprised. I suppose I was used to seeing my brother the way I remembered him when we were kids. Building forts out of the sofa cushions, watching Kung Fu Theater on Saturday afternoons, playing ping pong in the basement, shoveling the driveway. We are 6 years apart in age, so I never went to high school with him. I hardly saw him in the college and graduate school years, when I was living in Boston and Ann Arbor. In fact, even when I moved to the Bay Area, and he was living in San Francisco, our paths didn't cross too often, except during holidays when my parents came out to visit. I saw my other brother Eric much more frequently in the same period. Not only were Eric and I closer in age, but since I introduced his best friend to his now-wife, I was often invited to their group's social functions.
After almost a year of little communication, I emailed him about my diagnosis. I saw his response the next morning. Among other things, he wrote: "Well this is pretty shocking for me even though I deal with lymphoma on a daily basis...Personally, I would think it would be better for you to receive treatment closer to family. Whether that would involve some of us going over there or you coming here I'm sure we could all work out...Call me at ANY time". And he signed the letter with "Love". I was struck by that, for some reason, because I have always thought of Ed as the reserved one of us. I was also suddenly hit by the fact that Ed is an adult now (when did this happen?!), and is responsible for the care of a lot of other patients, like me. It's a bigger responsibility than I could ever imagine having in my life, and I am very proud of him.
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