[11:28pm]
Here's my counts:
WBC: 0.2 (0.2 yesterday)
Hematocrit: 28.6 (26.5 yesterday)
Platelets: 12,000 (18,000 yesterday)
Have you ever wondered what it would be like if you couldn't talk? Say you got in a horrific motorcycle accident that damaged only the speech centers of your brain... or an accident so bad that they had to permanently fuse your jaw shut.
I always imagined that I'd get along just fine. I'd carry a chalkboard around and communicate through written word.
10 years later, my elementary school daydream has turned into a reality...
Due to severe mouth pain, I can't speak right now... Not one bit.
"Testing... testing... this is a test."
Ok, I just tried talking. The other three previous attempts failed and were quite painful. But I can do it now!
It was the pain meds. Once my mouth started hurting, I began clicking. Not religiously (exacty every 10 minutes), but often enough.
I managed about 4 clicks before the nurse came in and inquired about my pain level. I write on my computer: "6: 7 when talking and when silent."
She had to take off (for another patient, I believe), but in a few moments she was back and we discussed our options with me talking on the computer.
She wanted to talk to the doctor, to get some part of my pain meds increased... I agreed... provided that I have at least a chance to try to get relief.
My strategy was to click as often as the pain machine would let you (10mins). It was my belief that after 30 minutes or so of doing this, that I could begin speaking again.
My experiment failed. She checked in on me, and I still couldn't speak. So, she ran off to contact the doctor. Meanwhile, I continued to type this entry and click every ten minutes.
Eventually, I had so much pain relief that I was able to speak some words. Still couldn't speak most words, and definitely not a sentence. Still, I had decided to quit clicking for a while because I realized that I had had A LOT! Plus, the pain was a bit more manageable.
Then the nurse had returned: The doctor approved upping my on-demand dose from 50mcg to 75mcg. I had specifically requested an increase in the on-demand dose instead of the continual dose. A continual dose is administered non-stop, whether you are feeling lots of pain or no pain at all... since my pain levels fluctuate, a continual dose is rather inconvenient. The tradeoff with Fentanyl is pain and mental acuity vs. no pain and less mental acuity. It would be lame to reduce one's acuity during a time when they were experiencing no pain.
Anyhow, I digress... Even though I can't speak now, the problem seems to have be resolved: pain relief for those nasty situations will be possible much quicker. This time, it took 130 minutes for satisfactory pain relief. With the increased on-demand rate, I should receive comparable pain relief (perhaps greater, because it is quicker) in about 86 minutes.
-------
Writing this post has been absurdly difficult. Remember what I said about mental acuity? Well, I've had quite a bit of Fentanyl, and my concentration is positively pathetic. I start to daydream mid-sentences, sometimes to such an extent that, instead of the subject-at-hand, I start to type about the dream instead of the blog. Sometimes I just drift off while typing a sentence: "something like thhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh"
In fact, that's why I was especially motivated to finish this little post -- my mind is challenging me!
Also, I'm sure my writing has been unclear and generally awful for this post. So I'm trying extra hard for it to make sense (Additional Challenge)! I'll find out tomorrow just how bad my writing is on large doses of Fentanyl.
Whew, I'm done. That took 2 hours and 10 minutes to write!
Showing posts with label routine. Show all posts
Showing posts with label routine. Show all posts
Wednesday, November 12, 2008
Thursday, November 6, 2008
[11-06-08] Day Three (Day +3)
[6:13pm]
Day 3 has come and gone for me, and despite my previous assertions, I believe that I was incorrect when I said that "Day 3" will be the most severe. From what nurses and doctors say alike, the worst days are those just before the time of "white blood cell recovery" - when your white blood cells begin to reproduce themselves normally.
Still, with all my personal hype built up, I have somewhat come to believe that day +3 is a milestone of sorts. So, in the name of journalistic integrity and whatnot, I am here to complain, yet again, about a new set of "experiences."
This morning started out like any other: with a shower. However, in order to shower-protect my newfound PIC catheter, I needed to figure out how to use their associated shower contraption. Not too tough -- imagine waterproof sleeves with belt strength cuffs at both ends. My arm was nice and warm.
In addition, I had to unplug myself from new and (EXTREMELY LOUD) health monitor. This is because they have me doped up on self-administered Fentanyl -- it makes sense, really, you don't want to give autreally bored individual an essentially limitless supply of Heroin without any precautions, do you?
So, that health monitor is yet one more thing that I have to worry about... plus the fact that the sensor is placed on my middle finger makes typing quite difficult.
After the shower is typically lunchtime: where someone walks into the room with some food. I like to see their expressions when I say, "Nah, I'm not eating food anymore. No thanks." They realy want to leave you the food -- as if their jobs depended on it. Oh well.
Not having to eat at all is quite liberating, in fact. Keeping certain foods down is a tremendous chore. Plus, often the food you can keep down tastes horrible or something. Then you puke it all up anyways, so all that effort was moot.
So, just skip the middleman and avoid eating entirely... say, until when your white counts start to recover.
As for the pills... yes, having some food in the stomach is necessary for digestion of certain pills.
I'd say: 1> Consider not taking said pill -- is it really important? or...
I'd say: 2> Ask from some Ativan before you take your pills -- it helps!
The other things I sped my time doing (religiously) is mouth care and skin care. I do my following skincare/mouthcare regimens every time I get up for the bathroom.
*** MOUTHCARE ***
1> Rince with saline solution and spit out. Sounds simple enough.
*** SKINCARE ***
1> Apply general moisturizer to dry areas on chest and back
2> Apply special anti-itch moisturizer to itchy areas on chest and back, armpits, and groin area.
3> Apply super-special cream to areas of skin with a rash due to repetitive motion of areas (arm pits, thighs, groins, etc...)
4> Apply ultra-special powder.
As much as I would hate to do so, #4 requires further elaboration if I am to be called a reporter of the facts. You could also label is as TMI;DR (Too much information; Don't Read).
Anyhow, VP-16 is VERY toxic for the skin. I mean, right now, my chest looks like it's been put through a blender. Huge purple streaks are visible, rashes, and spots of red dots (folliculitis) show up everywhere.
In addition, in areas with high friction, such as groin, or armpit, skin tissue has been known to slough off in chunks.
Let's just say that I'm fighting to prevent that from happening, it can be quite difficult, and that is where powder #4 comes into play.
I can see many making the following joke, so I'll just beat ya to it: For the sake....of...my skin...I must...powder my balls.
Lastly, I'd just like to say a few words about patient-controlled analgesic. They switched me from Dilaudid to Fentanyl which effective halt the pain related nausea! Awesome! No more choosing between having pain or being sick. That is all. Take care outside world.
Day 3 has come and gone for me, and despite my previous assertions, I believe that I was incorrect when I said that "Day 3" will be the most severe. From what nurses and doctors say alike, the worst days are those just before the time of "white blood cell recovery" - when your white blood cells begin to reproduce themselves normally.
Still, with all my personal hype built up, I have somewhat come to believe that day +3 is a milestone of sorts. So, in the name of journalistic integrity and whatnot, I am here to complain, yet again, about a new set of "experiences."
This morning started out like any other: with a shower. However, in order to shower-protect my newfound PIC catheter, I needed to figure out how to use their associated shower contraption. Not too tough -- imagine waterproof sleeves with belt strength cuffs at both ends. My arm was nice and warm.
In addition, I had to unplug myself from new and (EXTREMELY LOUD) health monitor. This is because they have me doped up on self-administered Fentanyl -- it makes sense, really, you don't want to give autreally bored individual an essentially limitless supply of Heroin without any precautions, do you?
So, that health monitor is yet one more thing that I have to worry about... plus the fact that the sensor is placed on my middle finger makes typing quite difficult.
After the shower is typically lunchtime: where someone walks into the room with some food. I like to see their expressions when I say, "Nah, I'm not eating food anymore. No thanks." They realy want to leave you the food -- as if their jobs depended on it. Oh well.
Not having to eat at all is quite liberating, in fact. Keeping certain foods down is a tremendous chore. Plus, often the food you can keep down tastes horrible or something. Then you puke it all up anyways, so all that effort was moot.
So, just skip the middleman and avoid eating entirely... say, until when your white counts start to recover.
As for the pills... yes, having some food in the stomach is necessary for digestion of certain pills.
I'd say: 1> Consider not taking said pill -- is it really important? or...
I'd say: 2> Ask from some Ativan before you take your pills -- it helps!
The other things I sped my time doing (religiously) is mouth care and skin care. I do my following skincare/mouthcare regimens every time I get up for the bathroom.
*** MOUTHCARE ***
1> Rince with saline solution and spit out. Sounds simple enough.
*** SKINCARE ***
1> Apply general moisturizer to dry areas on chest and back
2> Apply special anti-itch moisturizer to itchy areas on chest and back, armpits, and groin area.
3> Apply super-special cream to areas of skin with a rash due to repetitive motion of areas (arm pits, thighs, groins, etc...)
4> Apply ultra-special powder.
As much as I would hate to do so, #4 requires further elaboration if I am to be called a reporter of the facts. You could also label is as TMI;DR (Too much information; Don't Read).
Anyhow, VP-16 is VERY toxic for the skin. I mean, right now, my chest looks like it's been put through a blender. Huge purple streaks are visible, rashes, and spots of red dots (folliculitis) show up everywhere.
In addition, in areas with high friction, such as groin, or armpit, skin tissue has been known to slough off in chunks.
Let's just say that I'm fighting to prevent that from happening, it can be quite difficult, and that is where powder #4 comes into play.
I can see many making the following joke, so I'll just beat ya to it: For the sake....of...my skin...I must...powder my balls.
Lastly, I'd just like to say a few words about patient-controlled analgesic. They switched me from Dilaudid to Fentanyl which effective halt the pain related nausea! Awesome! No more choosing between having pain or being sick. That is all. Take care outside world.
Tuesday, November 4, 2008
[11-04-08] A Challenge! (Day +1)
[8:17am]
I feel that I have now familiarized with my arsenal: anti-emetics, Dilaudid, creams/ointments, mouthwash, applesauce, etc... I am ready for the challenge!
At first, of course, I felt quite helpless. I mean, I was limited to the drugs the doctors provide, the schedule of the nurses, and how my body reacts to the chemo... But now, I'm establishing a sort of routine. Each time I head to the bathroom, I apply various lotions and use the mouthwash. Each time my mouth hurts especially, or my stomach feels upset, I can click away on the clicker! Control! It is a good thing.
I suppose it's a time tested strategy for me: When the going gets tough, establish a routine. :P
Bah, I just vomited. All that effort getting my rice crispies soggy so that I could eat them... Oh well, I'll just eat more or something. It's routine -- what can ya do?
Funny... I can't talk right anymore :P I have to speak real slow -- like I'm drunk even.
[3:24pm]
They upped my Dilaudid because the mucositis got so severe. In the blink of an afternoon, I can't eay anything -- it just isn't possible. Even Jello is too abrasive! Popsicles: Your tongue has to scrape the ice off.
So, right now, I'm on a diet consisting entirely of Gatorade and water. Hmm, now is a perfect time to demonstrate the health benefits of non-alcoholic beer. A friend of mine's father, who is head of the pathology dept. at some big place, once told me that non-alcoholic beer is better for you than gatorade. The beer has starches, sugars, protein, and whatnot. So, they should prescribe me some non-alcoholic beer! My life may depend on it! :P
Seriously, though... they'll probably give me liquid nutrients or something... eck. I need to keep my stomach processing stuff!
Please excuse the fact that my posts may be a little less, uh, cerebral, than usual. :P
I feel that I have now familiarized with my arsenal: anti-emetics, Dilaudid, creams/ointments, mouthwash, applesauce, etc... I am ready for the challenge!
At first, of course, I felt quite helpless. I mean, I was limited to the drugs the doctors provide, the schedule of the nurses, and how my body reacts to the chemo... But now, I'm establishing a sort of routine. Each time I head to the bathroom, I apply various lotions and use the mouthwash. Each time my mouth hurts especially, or my stomach feels upset, I can click away on the clicker! Control! It is a good thing.
I suppose it's a time tested strategy for me: When the going gets tough, establish a routine. :P
Bah, I just vomited. All that effort getting my rice crispies soggy so that I could eat them... Oh well, I'll just eat more or something. It's routine -- what can ya do?
Funny... I can't talk right anymore :P I have to speak real slow -- like I'm drunk even.
[3:24pm]
They upped my Dilaudid because the mucositis got so severe. In the blink of an afternoon, I can't eay anything -- it just isn't possible. Even Jello is too abrasive! Popsicles: Your tongue has to scrape the ice off.
So, right now, I'm on a diet consisting entirely of Gatorade and water. Hmm, now is a perfect time to demonstrate the health benefits of non-alcoholic beer. A friend of mine's father, who is head of the pathology dept. at some big place, once told me that non-alcoholic beer is better for you than gatorade. The beer has starches, sugars, protein, and whatnot. So, they should prescribe me some non-alcoholic beer! My life may depend on it! :P
Seriously, though... they'll probably give me liquid nutrients or something... eck. I need to keep my stomach processing stuff!
Please excuse the fact that my posts may be a little less, uh, cerebral, than usual. :P
Wednesday, October 15, 2008
[10-15-08] Birthday Day
[10:58pm]
Today I did nothing... it was all I had hoped it would be. Nothing by conventional standards, that is: I played my new video game and read a little fantasy fiction.
In other words, I've turned into a slacker. It's a bit annoying, in fact. A few days ago, I sat in front of my computer with the intent to learn something and progress in skills essential to my career path. I couldn't motivate myself to do so.
Under normal circumstances, it is difficult to delay gratification for future goals. In my circumstances... well, I'd rather wait for a job interview before I buy a new business suit. That money could be used for fun, instead!
Regardless, I am becoming more adept at being a slacker. Sounds strange, huh? I mean, how hard is it to be lazy? Actually, it was quite distressing at first. I felt this huge pressure to accomplish things. Not to mention the enormous guilt attached to myself when I fail to accomplish those things. Then, there's the conquest of boredom: one needs to keep oneself constantly entertained... all those extra hours of the day.
I remember this time, after finals, when I found myself scraping off sticker adhesive off of my dorm door. I was moving out and I had to leave the dorm in pristine condition. However, I was doing this immediately after my last final (In perhaps my most difficult set of finals ever). I recall setting my backpack next to my door and truly enjoying removing that adhesive... with a blissful sense of freedom.
My point is that anything can seem fun when you've spent 100% of your time on work. I didn't have time to eat or socialize or anything during those finals.
Now, with all the spare time in the world, the equation works in reverse. One becomes extra picky about the quality of the television shows that the watch, the video games that they play, or the books that they read -- with more supply, comes higher standards.
So conquering boredom can be difficult at times.
Fortunately, I've encountered an exception book to read and an exception game to play. So I'm good... for now :P
But, of course, I'm not going to hole myself up! Wednesdays aren't opportune for birthday celebrations -- there'll be fun on Saturday.
Today I did nothing... it was all I had hoped it would be. Nothing by conventional standards, that is: I played my new video game and read a little fantasy fiction.
In other words, I've turned into a slacker. It's a bit annoying, in fact. A few days ago, I sat in front of my computer with the intent to learn something and progress in skills essential to my career path. I couldn't motivate myself to do so.
Under normal circumstances, it is difficult to delay gratification for future goals. In my circumstances... well, I'd rather wait for a job interview before I buy a new business suit. That money could be used for fun, instead!
Regardless, I am becoming more adept at being a slacker. Sounds strange, huh? I mean, how hard is it to be lazy? Actually, it was quite distressing at first. I felt this huge pressure to accomplish things. Not to mention the enormous guilt attached to myself when I fail to accomplish those things. Then, there's the conquest of boredom: one needs to keep oneself constantly entertained... all those extra hours of the day.
I remember this time, after finals, when I found myself scraping off sticker adhesive off of my dorm door. I was moving out and I had to leave the dorm in pristine condition. However, I was doing this immediately after my last final (In perhaps my most difficult set of finals ever). I recall setting my backpack next to my door and truly enjoying removing that adhesive... with a blissful sense of freedom.
My point is that anything can seem fun when you've spent 100% of your time on work. I didn't have time to eat or socialize or anything during those finals.
Now, with all the spare time in the world, the equation works in reverse. One becomes extra picky about the quality of the television shows that the watch, the video games that they play, or the books that they read -- with more supply, comes higher standards.
So conquering boredom can be difficult at times.
Fortunately, I've encountered an exception book to read and an exception game to play. So I'm good... for now :P
But, of course, I'm not going to hole myself up! Wednesdays aren't opportune for birthday celebrations -- there'll be fun on Saturday.
Friday, September 26, 2008
[9-26-08] Mobilization Routine
[1:25pm]
Cytoxan has been... difficult. However, I am somehow pleased that the side effects are so apparent -- it means it is working. Maybe there isn't a correlation between side effects and chemotherapy effectiveness, but it still feels somewhat reassuring to feel what a chemo-patient is supposed to be feeling.
I mean, I was drinking beers and doing construction throughout ICE and Stanford V! Right now, water is difficult to drink and I can hardly get out of bed! Well, I'll get a PET/CT Scan in a few weeks; we'll see just how effective this has been.
Anyways, I thought I'd post a bit of my routine to help illustrate my situation:
7:00am Go to bathroom, take Rifampin (the drug that causes you to sweat and cry orange), drink lots of water, take Neupogen out of fridge, go back to sleep.
9:00am Take 2mg Ativan (dissolve on tongue, don't swallow!). I need the Ativan to eat; I need to eat to take the other pills. Eat a bagel...slowly. Take the Zofran and Compazine (other two anti-nausea pills). Drink lots of water.
9:30am Take Famotidine (reduces acid in stomach). Put Aquaguard over catheter dressing so that I can take a shower. Take a shower.
10:00am Take Cipro and Welbutrin (stomach should be able to handle it at this point). Inject 3 needles of Neupogen. Drink lots of water.
10:15am Take remaining drugs and flush catheter with Heparin. Brush teeth.
10:30am Go back to sleep.
That's my morning ritual. Takes a bit longer than reading the morning paper, eh? The key is to take things very slowly; my stomach is incredibly sensitive. Today I nearly puked from eating a bagel too fast, can you believe that?!? The bagel...my staple food. No wonder Barbara says I'm eating 1/4 what I normally eat.
Then, for the most part, I spend the day sleeping. For some reason, I have the uncanny ability to sleep FOREVER now. Which is strange because I usually have difficulty sleeping. Oh well, I'll take it!
On another note, I managed to withdraw from school yesterday. So, I'm out! It's a sad/scary feeling, but at least it allows me to move on. I'm no longer a student. Bah
Also, I'll be heading to a symphony Sunday with Liz, Barbara, and Gloria -- can you believe that? That means I'll be wearing my Darth Vader HEPA mask in a symphony hall! That should get some stares. But if Liz is cool with her date from the dark side, so am I.
Cytoxan has been... difficult. However, I am somehow pleased that the side effects are so apparent -- it means it is working. Maybe there isn't a correlation between side effects and chemotherapy effectiveness, but it still feels somewhat reassuring to feel what a chemo-patient is supposed to be feeling.
I mean, I was drinking beers and doing construction throughout ICE and Stanford V! Right now, water is difficult to drink and I can hardly get out of bed! Well, I'll get a PET/CT Scan in a few weeks; we'll see just how effective this has been.
Anyways, I thought I'd post a bit of my routine to help illustrate my situation:
7:00am Go to bathroom, take Rifampin (the drug that causes you to sweat and cry orange), drink lots of water, take Neupogen out of fridge, go back to sleep.
9:00am Take 2mg Ativan (dissolve on tongue, don't swallow!). I need the Ativan to eat; I need to eat to take the other pills. Eat a bagel...slowly. Take the Zofran and Compazine (other two anti-nausea pills). Drink lots of water.
9:30am Take Famotidine (reduces acid in stomach). Put Aquaguard over catheter dressing so that I can take a shower. Take a shower.
10:00am Take Cipro and Welbutrin (stomach should be able to handle it at this point). Inject 3 needles of Neupogen. Drink lots of water.
10:15am Take remaining drugs and flush catheter with Heparin. Brush teeth.
10:30am Go back to sleep.
That's my morning ritual. Takes a bit longer than reading the morning paper, eh? The key is to take things very slowly; my stomach is incredibly sensitive. Today I nearly puked from eating a bagel too fast, can you believe that?!? The bagel...my staple food. No wonder Barbara says I'm eating 1/4 what I normally eat.
Then, for the most part, I spend the day sleeping. For some reason, I have the uncanny ability to sleep FOREVER now. Which is strange because I usually have difficulty sleeping. Oh well, I'll take it!
On another note, I managed to withdraw from school yesterday. So, I'm out! It's a sad/scary feeling, but at least it allows me to move on. I'm no longer a student. Bah
Also, I'll be heading to a symphony Sunday with Liz, Barbara, and Gloria -- can you believe that? That means I'll be wearing my Darth Vader HEPA mask in a symphony hall! That should get some stares. But if Liz is cool with her date from the dark side, so am I.
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