Monday, September 28, 2009
Monday, September 21, 2009
This weekend, I met a guy at a party, and we bonded our mutual love of gay synth pop. It quickly turned into a discussion of whether we preferred goth or industrial music in high school. I revealed that I definitely listened to a lot more industrial, to which he responded, "I figured that, given your haircut."
Yes, that's right, kids. My hair has grown back in to the point that it can now be mistaken for a fashion choice. WIN! (Of course, it will all fall out this week, but I'm enjoying it while it lasts.)
In other news, I think I'm getting a cold. This should be interesting.
Yes, that's right, kids. My hair has grown back in to the point that it can now be mistaken for a fashion choice. WIN! (Of course, it will all fall out this week, but I'm enjoying it while it lasts.)
In other news, I think I'm getting a cold. This should be interesting.
Tuesday, September 15, 2009
I wrote this update yesterday morning but got distracted and didn't post it. Since the writing, I managed to read 3 journal articles, go to a meeting and out to dinner (and eat a burrito, the most delicious of all possible non-candy foods), and generally function like a fairly normal human being. Go Team Me!
(Begin Monday's update) Sum total of the tasks I have accomplished in the past 15 hours: boil pasta, load the dishwasher, take the dogs out.
Sum total of the tasks I have accomplished in the past 6 days: same as above. Looks like the metaphorical grey skies are starting to clear up.
Other awesome things about today:
1) I've been awake for 3 hours and haven't been compelled to nap.
2) I managed to take my meds (nausea was keeping me from taking them earlier in the week).
3) I took a shower instead of a bath (which is the shower for people too nauseous to stand up for 10 minutes).
4) I drank some caffeine.
I worry, sometimes, when I write updates like this, it sounds like I'm saying, "Poor me. My life is so hard that I can't even do normal things like load the dishwasher," but this isn't at all what I'm trying to imply. I feel more like, "Life is amazing and just getting better! Look at all of this stuff that I managed to do today that I couldn't do yesterday! I'm a champion!" It also imbues all of these normal, dreary tasks with a sense of drama and challenge. So, instead of having to load the dishwasher as a normal chore, now when I load the dishwasher, it's this awesome thing that I managed to accomplish. It makes my life seem full of little victories all of the time. It's really neat in a way.
News about this cycle so far. Well, clearly, the first 6 days pretty much kicked me to the curb. Apparently, nausea is worse for women, people under 50, and people prone to motion sickness. So basically, me. I pretty much couldn't get off the couch at all because standing for more than a few seconds made me retch.
Besides the nausea, I haven't had a lot of other symptoms. I've been really dizzy, but I suspect that's because I haven't been taking my Effexor. Apparently, dizziness is a withdrawal symptom. My nose is still intermittently bloody and kind of painful, but that's because I'm still getting the Avastin. My fingernails hurt (I know, right?). And, of course, fatigue continues to hang around.
One weird thing, that may be a result of the Effexor withdrawal or not taking my Ritalin, is that grammar seems really screwy. I've been having some problems finding my words since I started chemo, but now, I'm having difficulty figuring out how how words fit together. It's not terrible when I read, although I do notice it, but I feel like my writing is particularly scrambled. Isn't that an odd side effect? I would probably make an interesting subject for a psycholinguistics study right now. Also, if this update makes no sense, that's why.
(Aside: As someone who is interested in cognition and learning, this whole chemo brain phenomena has been really fascinating. It's been especially interesting to experience this in an academic context. At some point, when my grammar gets back on track, I'd like to write a little essay about it.)
And in other news, my hair has started to grow back. My doctor assures me that it will fall out again within the next week or so, but it's really super soft right now. On the one hand, I'm reassured that it will grow back after chemo is over. On the other, I have no idea what I did with my razor.
Okay - Back to Tuesday again - Jay-Z, who NPR listeners will recognize as the United States of the rap game, is coming to State College, but tickets are sold out. As many of you know, I'm a pretty big Jay-Z fan, so I'm currently soliciting ways to use the cancer card to finagle tickets. Do I contact Jay Z's people with a sob story about how I was so sick with chemo that I couldn't get them or do I cry to the school? Please send me your ideas.
Yours truly,
The Liechtenstein of the rap game
(Begin Monday's update) Sum total of the tasks I have accomplished in the past 15 hours: boil pasta, load the dishwasher, take the dogs out.
Sum total of the tasks I have accomplished in the past 6 days: same as above. Looks like the metaphorical grey skies are starting to clear up.
Other awesome things about today:
1) I've been awake for 3 hours and haven't been compelled to nap.
2) I managed to take my meds (nausea was keeping me from taking them earlier in the week).
3) I took a shower instead of a bath (which is the shower for people too nauseous to stand up for 10 minutes).
4) I drank some caffeine.
I worry, sometimes, when I write updates like this, it sounds like I'm saying, "Poor me. My life is so hard that I can't even do normal things like load the dishwasher," but this isn't at all what I'm trying to imply. I feel more like, "Life is amazing and just getting better! Look at all of this stuff that I managed to do today that I couldn't do yesterday! I'm a champion!" It also imbues all of these normal, dreary tasks with a sense of drama and challenge. So, instead of having to load the dishwasher as a normal chore, now when I load the dishwasher, it's this awesome thing that I managed to accomplish. It makes my life seem full of little victories all of the time. It's really neat in a way.
News about this cycle so far. Well, clearly, the first 6 days pretty much kicked me to the curb. Apparently, nausea is worse for women, people under 50, and people prone to motion sickness. So basically, me. I pretty much couldn't get off the couch at all because standing for more than a few seconds made me retch.
Besides the nausea, I haven't had a lot of other symptoms. I've been really dizzy, but I suspect that's because I haven't been taking my Effexor. Apparently, dizziness is a withdrawal symptom. My nose is still intermittently bloody and kind of painful, but that's because I'm still getting the Avastin. My fingernails hurt (I know, right?). And, of course, fatigue continues to hang around.
One weird thing, that may be a result of the Effexor withdrawal or not taking my Ritalin, is that grammar seems really screwy. I've been having some problems finding my words since I started chemo, but now, I'm having difficulty figuring out how how words fit together. It's not terrible when I read, although I do notice it, but I feel like my writing is particularly scrambled. Isn't that an odd side effect? I would probably make an interesting subject for a psycholinguistics study right now. Also, if this update makes no sense, that's why.
(Aside: As someone who is interested in cognition and learning, this whole chemo brain phenomena has been really fascinating. It's been especially interesting to experience this in an academic context. At some point, when my grammar gets back on track, I'd like to write a little essay about it.)
And in other news, my hair has started to grow back. My doctor assures me that it will fall out again within the next week or so, but it's really super soft right now. On the one hand, I'm reassured that it will grow back after chemo is over. On the other, I have no idea what I did with my razor.
Okay - Back to Tuesday again - Jay-Z, who NPR listeners will recognize as the United States of the rap game, is coming to State College, but tickets are sold out. As many of you know, I'm a pretty big Jay-Z fan, so I'm currently soliciting ways to use the cancer card to finagle tickets. Do I contact Jay Z's people with a sob story about how I was so sick with chemo that I couldn't get them or do I cry to the school? Please send me your ideas.
Yours truly,
The Liechtenstein of the rap game
Wednesday, September 9, 2009
AC (Slater)
Another 2 updates in 2 days? What have you done to deserve this? Probably something quite bad.
Things I've learned since my last update.
1) My new chemo regimen is referred to as AC in cancer circles (As you know, I didn't just learn this, but I'm providing exposition). It's a drug combination which consists of something that starts with an A, which looks like red Kool-Aid that they inject with a syringe (i.e., not an IV, so I get to sit awkwardly while the nurse pushes the drug and try not to make creepy eye contact) into my port, and Cytoxan, which looks normal but has a particularly distressing name. This regimen was developed in like the 1930s (the nurse told me the exact date, but I mostly retained that it was old).
1.1) I like to envision people wearing fedoras and drinking martinis while listening to Glen Miller and Tommy Dorsey and getting their infusions, because apparently the 1930s through the early 1960s are pretty much the same to me.
1.2) Because of the change in drugs, I will not be getting Neupogen (which we knew) or Neulasta (which we didn't know). That means that during this first cycle in particular, I'll have no additional immune support and will be especially susceptible to infection. If you see me around and happen to be sick, please avoid me. I won't take it personally. I promise.
2) The Cytoxan is excreted through the urine in little grains, so if I don't drink enough water, I could pee sludge. Take the nausea you just experienced reading that sentence and multiply it times like a billion or so, and you'll have an idea of my current nausea. This is the definitely the more classic chemo experience (which makes sense given that the drugs essentially exist in a Raymond Chandler novel in my imagination), and I feel much more classically sick. I, however, am not feeling the same nerve pain, fatigue, or brain dysfunction that I usually feel on Day 1, though, so that's something. Plus, maybe the nausea will help me lose the 9 pounds I've gained since starting chemo.
2.1) If I may rant, WTF, Cancer? Chemo is supposed to leave me svelte and ready for the recently passed bathing suit season. I was expecting to not have to work to lose my wedding weight and now I have extra to lose? Why didn't I get the kind of cancer which makes the brochure on cancer nutrition ask, and I'm not making this up, "Have you considered adding whipped cream? " Yes, I have considered whipped cream, but now I'm stuck considering broccoli. I was robbed. Uncool, Cancer, uncool.
2.2) Lying on the couch complaining that you're dying is super fun when you have a cold, but it really loses something when you're feeling sick because you are actually fighting a deadly illness. It also kind of kills the joy of talking about how awesome my goth-themed funeral would be. Cancer, you ruin everything.
2.2.1) Please note: The awesome goth funeral does not depend on cause of death. I'm only talking about it less, because it's kind of morbid now. Also, if I do die of cancer or anything else, please make sure that my coffin has a giant sticker that says "NINJA DOWN" on it.
3) In order to soothe the sting of not being able to complain as much as I'd like while feeling sick, I've decided to be "strong." Actually being strong requires me to triumph in the face of adversity with little complaint. Being "strong" requires me to point out how strong I'm being when I do stuff like make a bowl of cereal. God help you all when I go to class tomorrow and take a quiz. That's like the "strongest" thing anyone with cancer has ever done. I'm like a regular freaking Lance Armstrong over here (with less juicing...sorry, I couldn't help it). I'm also going to get one of those yellow bracelets to point out how strong I'm living. (Is it bad karma to wear those ironically?)
4) Speaking of things that are fun for me and annoying for everyone else (i.e., everything I love), my friend Mike Batz made me these absolutely AMAZING actual cancer cards. They are seriously not to be believed in either their sheer awesomicity, creativity, or humor. Remind me to show them to you next time I see you. You won't regret it.
5) I will probably lose my remaining hair (referred to by my father as "a downy covering," referred to as me as a "badass chemohawk," and referred to by my friend Brendan, who is my new best friend ever, as "hot"). I really, really, really hope this happens on a weekday, because last time it was fascinating to watch. I'd love to be able to share it with friends and colleagues.
6) Since I've spent a good bit of this update talking about the negatives of cancer, I would like to point out a positive. It's allowed me to blur the line between the personal and professional, and develop personal relationships with people that would have otherwise been strictly professional. It has long been my belief that professional productivity and overall corporate culture is enhanced when co-workers view each other as friends and people, and I'm really thankful that I've gotten to see that side of people and share those sides of myself. Plus, it's been just wonderful to get to see how loving and supportive the people I work with are. I never expected anything less, but I've just been overwhelmed. (I've been overwhelmed by this in general and feel constantly blessed, but the professional support has made this whole adventure so much easier than it could have been otherwise.)
7) Shout out to my cousin Thistle who ran a race for me! You rule, This!
Okay, I'll shut up now. I fail to see how I can be so verbose in these updates and yet struggle to make length on every paper I've ever written. I fear that it may be that I love to talk about myself more than anything else, but let's just keep that between us.
Things I've learned since my last update.
1) My new chemo regimen is referred to as AC in cancer circles (As you know, I didn't just learn this, but I'm providing exposition). It's a drug combination which consists of something that starts with an A, which looks like red Kool-Aid that they inject with a syringe (i.e., not an IV, so I get to sit awkwardly while the nurse pushes the drug and try not to make creepy eye contact) into my port, and Cytoxan, which looks normal but has a particularly distressing name. This regimen was developed in like the 1930s (the nurse told me the exact date, but I mostly retained that it was old).
1.1) I like to envision people wearing fedoras and drinking martinis while listening to Glen Miller and Tommy Dorsey and getting their infusions, because apparently the 1930s through the early 1960s are pretty much the same to me.
1.2) Because of the change in drugs, I will not be getting Neupogen (which we knew) or Neulasta (which we didn't know). That means that during this first cycle in particular, I'll have no additional immune support and will be especially susceptible to infection. If you see me around and happen to be sick, please avoid me. I won't take it personally. I promise.
2) The Cytoxan is excreted through the urine in little grains, so if I don't drink enough water, I could pee sludge. Take the nausea you just experienced reading that sentence and multiply it times like a billion or so, and you'll have an idea of my current nausea. This is the definitely the more classic chemo experience (which makes sense given that the drugs essentially exist in a Raymond Chandler novel in my imagination), and I feel much more classically sick. I, however, am not feeling the same nerve pain, fatigue, or brain dysfunction that I usually feel on Day 1, though, so that's something. Plus, maybe the nausea will help me lose the 9 pounds I've gained since starting chemo.
2.1) If I may rant, WTF, Cancer? Chemo is supposed to leave me svelte and ready for the recently passed bathing suit season. I was expecting to not have to work to lose my wedding weight and now I have extra to lose? Why didn't I get the kind of cancer which makes the brochure on cancer nutrition ask, and I'm not making this up, "Have you considered adding whipped cream? " Yes, I have considered whipped cream, but now I'm stuck considering broccoli. I was robbed. Uncool, Cancer, uncool.
2.2) Lying on the couch complaining that you're dying is super fun when you have a cold, but it really loses something when you're feeling sick because you are actually fighting a deadly illness. It also kind of kills the joy of talking about how awesome my goth-themed funeral would be. Cancer, you ruin everything.
2.2.1) Please note: The awesome goth funeral does not depend on cause of death. I'm only talking about it less, because it's kind of morbid now. Also, if I do die of cancer or anything else, please make sure that my coffin has a giant sticker that says "NINJA DOWN" on it.
3) In order to soothe the sting of not being able to complain as much as I'd like while feeling sick, I've decided to be "strong." Actually being strong requires me to triumph in the face of adversity with little complaint. Being "strong" requires me to point out how strong I'm being when I do stuff like make a bowl of cereal. God help you all when I go to class tomorrow and take a quiz. That's like the "strongest" thing anyone with cancer has ever done. I'm like a regular freaking Lance Armstrong over here (with less juicing...sorry, I couldn't help it). I'm also going to get one of those yellow bracelets to point out how strong I'm living. (Is it bad karma to wear those ironically?)
4) Speaking of things that are fun for me and annoying for everyone else (i.e., everything I love), my friend Mike Batz made me these absolutely AMAZING actual cancer cards. They are seriously not to be believed in either their sheer awesomicity, creativity, or humor. Remind me to show them to you next time I see you. You won't regret it.
5) I will probably lose my remaining hair (referred to by my father as "a downy covering," referred to as me as a "badass chemohawk," and referred to by my friend Brendan, who is my new best friend ever, as "hot"). I really, really, really hope this happens on a weekday, because last time it was fascinating to watch. I'd love to be able to share it with friends and colleagues.
6) Since I've spent a good bit of this update talking about the negatives of cancer, I would like to point out a positive. It's allowed me to blur the line between the personal and professional, and develop personal relationships with people that would have otherwise been strictly professional. It has long been my belief that professional productivity and overall corporate culture is enhanced when co-workers view each other as friends and people, and I'm really thankful that I've gotten to see that side of people and share those sides of myself. Plus, it's been just wonderful to get to see how loving and supportive the people I work with are. I never expected anything less, but I've just been overwhelmed. (I've been overwhelmed by this in general and feel constantly blessed, but the professional support has made this whole adventure so much easier than it could have been otherwise.)
7) Shout out to my cousin Thistle who ran a race for me! You rule, This!
Okay, I'll shut up now. I fail to see how I can be so verbose in these updates and yet struggle to make length on every paper I've ever written. I fear that it may be that I love to talk about myself more than anything else, but let's just keep that between us.
Tuesday, September 8, 2009
So, I've rewritten this update like 3 times because it's kind of boring, but somehow I feel like you'll manage to slog through it. I guess sometimes cancer is just boring.
Time for the end of cycle update. I don't have too much to say about this cycle, so maybe somehow I'll manage to refrain from turning this into a novel. But, before we get into a discussion about chemo, I have two pieces of important news.
1) Both my medical oncologist and my surgical oncologist agree that my cancer has gone down a stage. While clinical staging studies can't be completed until after my surgery, at diagnosis I was somewhere in the Stage III range (there are 3 types of stage 3, and I was either B or C). Now, both doctors think I'm Stage II. The 5 year survival rate for people with Stage IIIC breast cancer is 54%. It's 86% for people with Stage II breast cancer. So, IN YOUR FACE, DEATH!
2) I finally got a cancer puppy! Don and I have been talking about getting a second dog since we decided to move to State College, but neither of us had the time to invest in a new dog. However, since I'm spending a lot more time at home and we have 3 people on deck, we decided the time was right. Also, the cancer card may have been played. At any rate, our puppy is a black lab/golden retriever mix named Beulah, and I'm completely head over heels in love.
So, chemo news. Much like last cycle, the overt side effects, such as mouth and nose sores, have been pretty mild. I've still been having some nosebleeds, but they haven't been too bad. I did get a pretty awesome gusher in the first meeting of my Neuroscience and Memory class, but it stopped pretty quickly, leaving a giant bloodstain on my pants as the only reminder. I also got to say, "Sorry to inconvenience you by getting cancer," which brightened my day.
However, less obvious side effects, like fatigue, have been worse. At my chemo appointment, I managed to convince my oncologist to prescribe low dose ritalin, as it's been shown to help with chemo brain and fatigue in some small sample studies. (Note: I feel my doctors both love and hate having a patient that reads the scientific literature.) I figured it might help, and if it didn't I could make a quick buck selling it to undergrads (this is a joke). It's actually been fairly effective, so I won't be able to buy that timeshare in Colombia quite yet.
One of the weird things about chemo is that it kind of changes assumptions I've had about the way my body functions. This has been particularly evident with the fatigue. For example, I've always been a terrible napper. Usually, I can't fall asleep during the day, and if I do, I can only sleep for 20 minutes or so. I also am typically incapable of sleeping in, so regardless of when I go to bed, I nearly always wake up around 7:30. However, since I started chemo, I'll lie down for a nap, thinking I'll get up in half an hour, and wake up 2 to 3 hours later. Also, for the first time in my life, I've been oversleeping. This sort of thing has been happening with food as well. Chemo increases your metabolic rate, but it changes over the course of the cycle. It also changes the hunger signals. As an adult, I've pretty much always had the same "food budget" (i.e., the number of calories I can eat to maintain my weight), and now I'm never quite sure how to manage my food intake. It's an odd feeling to have all of these changes, and I feel like I need to watch some of those "My body is changing" videos from middle school health class.
Speaking of body changes, I met with the surgical oncologist, and we've decided to go with a bilateral radical mastectomy. It's going to be radical! I'll probably have surgery in late December or early January, followed by 10 more chemo cycles (I only get these b/c of the clinical trial) that will run concurrent with radiation. Then I get another reconstruction surgery (most likely) and later a revision surgery (also most likely). After that, it's 5 to 7 years of hormone therapy and then I'm done!
Okay, I'm off to the hospital for my infusion. I get different drugs this time, so it will be a new adventure. Yay!
Time for the end of cycle update. I don't have too much to say about this cycle, so maybe somehow I'll manage to refrain from turning this into a novel. But, before we get into a discussion about chemo, I have two pieces of important news.
1) Both my medical oncologist and my surgical oncologist agree that my cancer has gone down a stage. While clinical staging studies can't be completed until after my surgery, at diagnosis I was somewhere in the Stage III range (there are 3 types of stage 3, and I was either B or C). Now, both doctors think I'm Stage II. The 5 year survival rate for people with Stage IIIC breast cancer is 54%. It's 86% for people with Stage II breast cancer. So, IN YOUR FACE, DEATH!
2) I finally got a cancer puppy! Don and I have been talking about getting a second dog since we decided to move to State College, but neither of us had the time to invest in a new dog. However, since I'm spending a lot more time at home and we have 3 people on deck, we decided the time was right. Also, the cancer card may have been played. At any rate, our puppy is a black lab/golden retriever mix named Beulah, and I'm completely head over heels in love.
So, chemo news. Much like last cycle, the overt side effects, such as mouth and nose sores, have been pretty mild. I've still been having some nosebleeds, but they haven't been too bad. I did get a pretty awesome gusher in the first meeting of my Neuroscience and Memory class, but it stopped pretty quickly, leaving a giant bloodstain on my pants as the only reminder. I also got to say, "Sorry to inconvenience you by getting cancer," which brightened my day.
However, less obvious side effects, like fatigue, have been worse. At my chemo appointment, I managed to convince my oncologist to prescribe low dose ritalin, as it's been shown to help with chemo brain and fatigue in some small sample studies. (Note: I feel my doctors both love and hate having a patient that reads the scientific literature.) I figured it might help, and if it didn't I could make a quick buck selling it to undergrads (this is a joke). It's actually been fairly effective, so I won't be able to buy that timeshare in Colombia quite yet.
One of the weird things about chemo is that it kind of changes assumptions I've had about the way my body functions. This has been particularly evident with the fatigue. For example, I've always been a terrible napper. Usually, I can't fall asleep during the day, and if I do, I can only sleep for 20 minutes or so. I also am typically incapable of sleeping in, so regardless of when I go to bed, I nearly always wake up around 7:30. However, since I started chemo, I'll lie down for a nap, thinking I'll get up in half an hour, and wake up 2 to 3 hours later. Also, for the first time in my life, I've been oversleeping. This sort of thing has been happening with food as well. Chemo increases your metabolic rate, but it changes over the course of the cycle. It also changes the hunger signals. As an adult, I've pretty much always had the same "food budget" (i.e., the number of calories I can eat to maintain my weight), and now I'm never quite sure how to manage my food intake. It's an odd feeling to have all of these changes, and I feel like I need to watch some of those "My body is changing" videos from middle school health class.
Speaking of body changes, I met with the surgical oncologist, and we've decided to go with a bilateral radical mastectomy. It's going to be radical! I'll probably have surgery in late December or early January, followed by 10 more chemo cycles (I only get these b/c of the clinical trial) that will run concurrent with radiation. Then I get another reconstruction surgery (most likely) and later a revision surgery (also most likely). After that, it's 5 to 7 years of hormone therapy and then I'm done!
Okay, I'm off to the hospital for my infusion. I get different drugs this time, so it will be a new adventure. Yay!
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