Today is chemo day, and I've spent remarkably little time thinking about what to wear. Not sure what that means. It will be my first deliciously fragrant infusion in Hershey's new cancer center It has WiFi, so there is a chance you may see me on the interwebz (however, it also has cable, and I'm really hoping Bravo will be showing the deliciously trashy looking NYC Prep or Miami Social).
Also, I have to take steroids on the day before, day of, and day after my treatment. While I have yet to experience 'roid rage (settling merely for 'roid 'rritation), it does screw with my sleep, and therefore writing, habits. If you see extra typos or things that don't make sense, just imagine me whipping out the cancer card.
So, onto Week 2 (electric bugaloo) after the infusion.
I'd say that Week 2 is a misnomer (which is sad because I came up with it, but, well, cancer card), because it really starts around Day 5 after treatment. By Day 5, most of the nausea/stomach yuck, fatigue, and weird limb fire has abated, and we get into the really strange side effects. Without the fatigue to sideline me all of the time, these side effects tend to have less impact on my daily life, which is nice. However, they tend to be much more unusual and grosser than the Week 1 side effects. Since I love gross things, I thought I'd describe them for you.
First gross side effect - oral thrush, the yeast infection for your mouth! Apparently, this is one of the most common side effects of immunosuppression. Essentially, my wacked out body can no longer keep my oral flora in check, so yeast (which lives in everyone's mouth, including yours, right now) decides it's time to subvert the dominant paradigm and make its move for supremacy. Which hurts. A lot. When I was in the hospital that time, they kept telling me about how scary shingles are and how I needed IV antibiotics so I didn't die, and my only thought was, "Can you please give me something for this thrush?" Thrush can spread to your esophagus, which causes a quick, gross, and painful death. Unfortunately, I can't really gargle with Monistat (boys, those are the commercials you look away from when you watch Grey's Anatomy with your lady), but I do have some antifungal pills I can take now.
Second gross side effect - sores on the inside of my nose. I have NO idea what this is about, but it's happened twice now. I'll give you an update on it if it's particularly gross or weird after I've talked to my doctor to get the 411. Basically, I just get sores all along the inside of my septum. They are bloody and crusty, and they sit right inside my turbinates (those little flappy things that are right on the inside of your septum), and the crust rubs up against the tubinate every time I move my nose. They are more irritating than painful, but make me fidget with my nose a lot (which is classy). Reading the internet, which is ALWAYS a good idea when looking for medical information, seems to suggest it's a side effect of Avastin, one of the drugs I take for my clinical trial.
Third gross side effect - hair loss. So, you mostly know about this one. I started losing my hair on Day 15 after my first treatment and it stabilized around Day 18. The weird thing is that it happened again on Day 15 of this cycle. This is AWESOME! My hair was already a lost cause, but now I have even less leg hair to shave. Someone on one of the boards I post on was saying that she works in a cancer center and a lot of people's body hair never recovers, while their head hair does. If I can get out of cancer with smaller boobs and no leg hair, it will have all been worth it. If you are the praying type, this is the ultimate goal.
I'd like to talk about the hair loss thing because I've been having "feelings" about it. As many of you know, I'm not generally one of those people who has a lot of "feelings," but somehow I manage to soldier through. Many of these feelings, such as feeling conspicuous and unattractive, are pretty normal and just need some time and working through. However, one feeling has really surprised me, so I thought I'd share it. When the wind blows through the sparse stubble on my head, it is the most amazing sensation ever. Twice, I've caught myself lying in bed feeling sad that so many people never get to have the wind flow through their stubble and wondering if there is a way to induce the same level of thin stubble without going through chemo so that I can share it. I imagine I'll become less enamored of this once Winter hits, but for now, I really pleased that I've gotten the chance to experience it. Perhaps balding men get to go through the same thing.
Tuesday, July 28, 2009
Sunday, July 26, 2009
I have my next chemo infusion on Tuesday, so I thought I'd write a nice little update about what chemo has been like. I feel like chemo is one of those things that sounds super scary, and thus, I'll scratch your morbid itch with some tales from the dark side. Since these updates tend to get a little epic, and I'd hate to offend the tl;dr crowd (that's "too long, didn't read" for those of you who haven't been spending a lot of time reading the internet lately), I'll discuss a different week of chemo during each of the next few updates.
First off, let me describe my chemo schedule a bit. I get an infusion every three weeks, and my side effects seem to change with every week between infusions. When I get my infusion, I get a shot of sweet, sweet Ativan to calm me, (which I don't really need, but I get this weird smug thrill anytime I'm prescribed drugs that have street value, like I won a prescription lottery or something) and a nausea suppressant and then I get two chemo drugs. The first is docetaxel (brand name taxotere), which is standard treatment for non-metastatic (yay!!) breast cancer. The second is a drug I can't spell (brand name avastin), which is part of the clinical trial. I also get another drug I can't spell (brand name xoloda) in pill form that I take for 14 days as part of the clinical trial. Avastin and xoloda are used in patients with metastatic breast cancer, and the clinical trial is looking at whether patients who get these drugs as part of standard chemo have better outcomes than patients who only get docetaxel. I will get this regimen of drugs for two more cycles (i.e., Tuesday and then three weeks from Tuesday) before my drugs change to what's known in cancer circles (you know, among us elite cancer patients) as AC. I'm sure I'll write another long post about that when it happens.
In this update, I'll describe Week 1:
So, the actual infusion process has a tendency to be pretty great. I start off with the ativan and revel in the smugness that only comes from knowing that kids are illicitly trading their hard earned allowance for this drug in dingy high school bathrooms. Then, I lie around and watch trashy TV (full disclosure: I adore terrible TV, movies, and amateur fiction, the trashier the better) for a couple of hours while the rest of the chemo drips straight into my heart (!!) and then make Cassie or Don or whoever drive home.
Immediately afterwards, I mostly feel tired (thanks ativan!), but I also feel the effects of the chemo pretty quickly. My biggest side effect during week 1 is an overwhelming sense of malaise. I feel tired and gross and mentally foggy and just generally mildly unwell. I have a little bit of nausea and a little bit of indigestion, but mostly my stomach feels somehow off. I get a touch of peripheral neuropathy which makes my skin and extremities feel like they are stuck in a low temperature fire. It doesn't really hurt, but again, it feels mildly uncomfortable. Finally, I get this kind of profound fatigue. I'll be out doing something, like complaining about how mildly unwell I feel (one of my favorite pastimes), and suddenly feel this overwhelming need to take a nap. Then, like a heroin addict looking for his next fix (I'm trying to add a lot of drug references since I'm writing about chemo), I become singularly consumed with a search for a bed. Once the bed is found, I cook it up and shoot it. Or maybe lie in it and sleep for 2 to 3 hours. This can happen up to 4 times per day on a particularly fatiguing day and usually goes away by Day 4 or 5 after chemo. Week 1 is the least fun of all of the weeks.
I also have a lot of taste changes during Week 1. Taste changes are easily the weirdest part of chemo because they come and go, so you never know when you're going to get a surprise bite of disgusting. Even water will taste strange during Week 1. Taste changes are also the saddest part of chemo, because inevitably, I'll get an intense craving for something, like a delicious refreshing Coca Cola, only to have it taste terrible. The craving won't go away, so I'm just stuck longing for something that no longer exists for me. I told you it was sad! One of the weirdest taste changes, which only seems to happen during Week 1, is that carbonated beverages, such as the aforementioned soda, all seem flat and too sweet. Gummi bears, on the other hand, taste bitter. (To those of you that gave me tons of gummi bears during my chemo shower, please don't fret. They start tasting great again during Week 2.)
During Week 1, I also have to get daily neupogen shots. You may remember from past updates that neupogen is a drug that boosts my white blood cell counts. They make another drug like this, neulasta, which you only get once, but apparently it's contraindicated during this chemo regime. So, everyday, I traipse off to the hospital to get the injection.
It is during these trips to the hospital that I sometimes pause and reflect on the cancer experience and think, "This kind of sucks." My inner monologue usually goes more like, "I can see how someone who wasn't as optimistic would really get bummed out by this. It's inconvenient and kind of hurts and I feel mildly unwell anyway and my hat looks kind of dumb. You know, (aside: I never really think 'you know' to myself, but for the sake of written transitions, let's pretend I do), they say that optimists are the least realistic people and that depressed people have a much more realistic view of the world. Maybe I should be depressed. That doesn't sound like much fun," and then I start wondering about what kind of douchey thing Jon Gosselin got up to that afternoon and if acid washed jeans will ever come back in (as an optimist, I think not). Usually, after the shots, I get some bone pain (that's how I know it's working) and take some percocet and feel smug.
Also, during these trips, I get blood work done, and I think about how blood is made up of different kinds of blood and how I can have too much of some blood and not enough of other blood. Think about this sometime and it will BLOW YOUR MIND!
Weeks 2 and 3 to follow when I get around to writing them.
Not related to chemo, but Cassie just told me that in the Philippines, they have Orange Julius, but it's called Orange Brutus. The more I think about that, the funnier it gets.
First off, let me describe my chemo schedule a bit. I get an infusion every three weeks, and my side effects seem to change with every week between infusions. When I get my infusion, I get a shot of sweet, sweet Ativan to calm me, (which I don't really need, but I get this weird smug thrill anytime I'm prescribed drugs that have street value, like I won a prescription lottery or something) and a nausea suppressant and then I get two chemo drugs. The first is docetaxel (brand name taxotere), which is standard treatment for non-metastatic (yay!!) breast cancer. The second is a drug I can't spell (brand name avastin), which is part of the clinical trial. I also get another drug I can't spell (brand name xoloda) in pill form that I take for 14 days as part of the clinical trial. Avastin and xoloda are used in patients with metastatic breast cancer, and the clinical trial is looking at whether patients who get these drugs as part of standard chemo have better outcomes than patients who only get docetaxel. I will get this regimen of drugs for two more cycles (i.e., Tuesday and then three weeks from Tuesday) before my drugs change to what's known in cancer circles (you know, among us elite cancer patients) as AC. I'm sure I'll write another long post about that when it happens.
In this update, I'll describe Week 1:
So, the actual infusion process has a tendency to be pretty great. I start off with the ativan and revel in the smugness that only comes from knowing that kids are illicitly trading their hard earned allowance for this drug in dingy high school bathrooms. Then, I lie around and watch trashy TV (full disclosure: I adore terrible TV, movies, and amateur fiction, the trashier the better) for a couple of hours while the rest of the chemo drips straight into my heart (!!) and then make Cassie or Don or whoever drive home.
Immediately afterwards, I mostly feel tired (thanks ativan!), but I also feel the effects of the chemo pretty quickly. My biggest side effect during week 1 is an overwhelming sense of malaise. I feel tired and gross and mentally foggy and just generally mildly unwell. I have a little bit of nausea and a little bit of indigestion, but mostly my stomach feels somehow off. I get a touch of peripheral neuropathy which makes my skin and extremities feel like they are stuck in a low temperature fire. It doesn't really hurt, but again, it feels mildly uncomfortable. Finally, I get this kind of profound fatigue. I'll be out doing something, like complaining about how mildly unwell I feel (one of my favorite pastimes), and suddenly feel this overwhelming need to take a nap. Then, like a heroin addict looking for his next fix (I'm trying to add a lot of drug references since I'm writing about chemo), I become singularly consumed with a search for a bed. Once the bed is found, I cook it up and shoot it. Or maybe lie in it and sleep for 2 to 3 hours. This can happen up to 4 times per day on a particularly fatiguing day and usually goes away by Day 4 or 5 after chemo. Week 1 is the least fun of all of the weeks.
I also have a lot of taste changes during Week 1. Taste changes are easily the weirdest part of chemo because they come and go, so you never know when you're going to get a surprise bite of disgusting. Even water will taste strange during Week 1. Taste changes are also the saddest part of chemo, because inevitably, I'll get an intense craving for something, like a delicious refreshing Coca Cola, only to have it taste terrible. The craving won't go away, so I'm just stuck longing for something that no longer exists for me. I told you it was sad! One of the weirdest taste changes, which only seems to happen during Week 1, is that carbonated beverages, such as the aforementioned soda, all seem flat and too sweet. Gummi bears, on the other hand, taste bitter. (To those of you that gave me tons of gummi bears during my chemo shower, please don't fret. They start tasting great again during Week 2.)
During Week 1, I also have to get daily neupogen shots. You may remember from past updates that neupogen is a drug that boosts my white blood cell counts. They make another drug like this, neulasta, which you only get once, but apparently it's contraindicated during this chemo regime. So, everyday, I traipse off to the hospital to get the injection.
It is during these trips to the hospital that I sometimes pause and reflect on the cancer experience and think, "This kind of sucks." My inner monologue usually goes more like, "I can see how someone who wasn't as optimistic would really get bummed out by this. It's inconvenient and kind of hurts and I feel mildly unwell anyway and my hat looks kind of dumb. You know, (aside: I never really think 'you know' to myself, but for the sake of written transitions, let's pretend I do), they say that optimists are the least realistic people and that depressed people have a much more realistic view of the world. Maybe I should be depressed. That doesn't sound like much fun," and then I start wondering about what kind of douchey thing Jon Gosselin got up to that afternoon and if acid washed jeans will ever come back in (as an optimist, I think not). Usually, after the shots, I get some bone pain (that's how I know it's working) and take some percocet and feel smug.
Also, during these trips, I get blood work done, and I think about how blood is made up of different kinds of blood and how I can have too much of some blood and not enough of other blood. Think about this sometime and it will BLOW YOUR MIND!
Weeks 2 and 3 to follow when I get around to writing them.
Not related to chemo, but Cassie just told me that in the Philippines, they have Orange Julius, but it's called Orange Brutus. The more I think about that, the funnier it gets.
Tuesday, July 14, 2009
Time for a cancer update - only 5 days later than promised. (Give me a break, I have cancer.) Honestly, there isn't much to report. I got chemo on Wednesday, which went fine, but then I promptly came down with chemobrain and lost my keys. After an enthusiastic search, in which two nurses and a security guard helped us turn the hospital upside down, our hero, Cassie, thought to see if we'd left them in the car. We had! The keys were found and a delightful ride to State College was had by all (actually, just me and Cass, because it would have been weird if the nurses and security guard came home with us).
This chemo cycle has been different from the previous one in a few ways. First off, I received slightly lower doses of most of the medicines due to my unfortunate hospital stay during the last cycle. I've also been getting daily neupogen shots to boost my white cell counts. The shots seem to be helping, since I haven't been having many of the infectious type side effects that I suffered from last time. While the infectious type side effects (ITSEs) have been practically nil, I've been much more fatigued with this cycle and the aforementioned chemobrain (a real thing they tell you about in the hospital) has been worse. Today, I woke up pretty bright-eyed and bushy-tailed (growing a tail is a side-effect of one of the meds I'm on), though, so I'm hoping that I'll be back to my perky self in no time flat.
Some excellent news did come out of my pre-infusion doctor appointment. Every time I see my medical oncologist, she takes a little measuring tape and does a rough estimate of my tumor size. After my first round of chemo, my tumor has shrunk from about 5.5 cms, to 4 cms! If it continues to shrink at this rate, I will have no tumor by the time they do surgery! Not only is this fantastic news for my tumor, but it means that any cancer cells floating around in my bloodstream are in for a world of hurt.
So, that's about it for this update. I was hoping to write something a little funnier, perhaps incorporating some of the weirder chemo side effects, like taste changes, but the brain fog is impeding my usually rapier sharp wit. I'll try to save up some good jokes for next time.
This chemo cycle has been different from the previous one in a few ways. First off, I received slightly lower doses of most of the medicines due to my unfortunate hospital stay during the last cycle. I've also been getting daily neupogen shots to boost my white cell counts. The shots seem to be helping, since I haven't been having many of the infectious type side effects that I suffered from last time. While the infectious type side effects (ITSEs) have been practically nil, I've been much more fatigued with this cycle and the aforementioned chemobrain (a real thing they tell you about in the hospital) has been worse. Today, I woke up pretty bright-eyed and bushy-tailed (growing a tail is a side-effect of one of the meds I'm on), though, so I'm hoping that I'll be back to my perky self in no time flat.
Some excellent news did come out of my pre-infusion doctor appointment. Every time I see my medical oncologist, she takes a little measuring tape and does a rough estimate of my tumor size. After my first round of chemo, my tumor has shrunk from about 5.5 cms, to 4 cms! If it continues to shrink at this rate, I will have no tumor by the time they do surgery! Not only is this fantastic news for my tumor, but it means that any cancer cells floating around in my bloodstream are in for a world of hurt.
So, that's about it for this update. I was hoping to write something a little funnier, perhaps incorporating some of the weirder chemo side effects, like taste changes, but the brain fog is impeding my usually rapier sharp wit. I'll try to save up some good jokes for next time.
Wednesday, July 8, 2009
It's chemo day! Here's to hoping that it's a theme day on the cancer ward! I'm wearing my "Chemo: all of the cool kids are doing it" shirt to show my chemotastic pride, and my favorite shoes that I wanted to wear last time but ultimately decided against. Fascinating, I know.
I thought you might like to see some pictures of the great head shaving of 2009. Facebook says that anyone should be able to view them using this link: http://www.facebook.com/album.php?aid=87506&id=775822206&l=531411302f. That look lasted a total of like 12 hours before I started getting a bald patch in the front of my awesome fauxhawk. I have to say, I loved the really short look, though. I can't wait to rock it again when the hair grows back in. (Also, please note that we are redoing the bathroom and don't actually live in a hovel...unless it increases your sympathies towards me, in which case we do.)
Also, here is a picture now that I've lost most of my hair. Please note that the glamor shots angle is a result of Don being like 18 feet taller than I am. http://www.facebook.com/photo.php?pid=1936266&l=9cbda30944&id=775822206
Sorry for the lame links. I will fix after chemo.
I still have to shave my legs (which is BULLSHIT), but less frequently. My armpit hair is pretty much mostly gone. My eyebrows are thinning, but very slowly. My eyelashes were a joke to begin with, so I haven't been keeping good tabs on them. Maybe after all of this is done, I can get that drug that makes your eyelashes grow without feeling like a total tool about it.
I'll post a second update after I get my chemicals pumped right into my heart. (Can you tell I am completely and utterly enamored with the idea of things going straight into my heart?)
And finally, my tumor feels very different and smaller and not as attached to my skin. Chemo is definitely working.
I thought you might like to see some pictures of the great head shaving of 2009. Facebook says that anyone should be able to view them using this link: http://www.facebook.com/album.php?aid=87506&id=775822206&l=531411302f. That look lasted a total of like 12 hours before I started getting a bald patch in the front of my awesome fauxhawk. I have to say, I loved the really short look, though. I can't wait to rock it again when the hair grows back in. (Also, please note that we are redoing the bathroom and don't actually live in a hovel...unless it increases your sympathies towards me, in which case we do.)
Also, here is a picture now that I've lost most of my hair. Please note that the glamor shots angle is a result of Don being like 18 feet taller than I am. http://www.facebook.com/photo.php?pid=1936266&l=9cbda30944&id=775822206
Sorry for the lame links. I will fix after chemo.
I still have to shave my legs (which is BULLSHIT), but less frequently. My armpit hair is pretty much mostly gone. My eyebrows are thinning, but very slowly. My eyelashes were a joke to begin with, so I haven't been keeping good tabs on them. Maybe after all of this is done, I can get that drug that makes your eyelashes grow without feeling like a total tool about it.
I'll post a second update after I get my chemicals pumped right into my heart. (Can you tell I am completely and utterly enamored with the idea of things going straight into my heart?)
And finally, my tumor feels very different and smaller and not as attached to my skin. Chemo is definitely working.
Subscribe to:
Posts (Atom)