[9:29am]
Here I am, sitting in the good 'ol ITA (Infusion Treatment Area). It makes me feel like I've come full circle: Cancer Center (Stanford V) -> Hospital (ICE) -> Cancer Center (Pre-BMT) -> Hospital (BMT). But that's really not the case -- it's just the next part of a new phase.
But I'm fine with that. Well, not entirely. It's really hard not to get overwhelmed by all of this; it takes strength just to get up and do stuff. I'm sure that will change in a week or so, but it's hard to think about the future when you feel the present so much.
Yesterday, my mom and I got established in our new little apartment. It's a compact place with all the standard necessities that you'd find in a small studio (except that the bedroom has two twin beds).
It is a wonderful, wonderful thing to walk from one room to another! A bed in one room, and your computer in another -- how profound! There's room to pace! I am not confined! The only problem is that the bathroom has that "hospital smell" that I've learned to despise. They must use the same cleaners or something; I need to get an air freshener.
Sleep's been really, really difficult. I have this hot/cold problem that I've just started to figure out. The problem starts like this: I am cold, so I move and adjust the blanket to cover me more. After a few seconds, this new adjustment has me way too hot, so I pull the blanket away. Rinse; Repeat.
I believe this is because I am so pathetically out of shape. If I get up to do anything, I break a sweat and get hot. This is why I spent most of my time in the hospital shirtless -- otherwise I'd keep removing my shirt and putting it back on... a blanket it quicker.
Anyhow, so my "thermal core" overheats when I do pretty much anything -- including a simple blanket adjustment. This is why I go from cold to hot so quickly.
So, my new sleep strategy is two-fold: 1>Take Ambien, and 2> Make all blanket adjustments very slowly, and with a minimal amount of effort. It takes practice.
Perhaps the best strategy is just to exercise more.
Showing posts with label side-effects. Show all posts
Showing posts with label side-effects. Show all posts
Thursday, November 20, 2008
Sunday, November 16, 2008
[11-16-08] Sad Times (Day + 13)
[Counts]
WBC: 27.9
HCT: 26.1
Platelets: 36,000
[5:28pm]
Too much complaining; don't read.
I'm in a foul mood. Well, more accurately, I've been in a foul mood... for what seems like days now.
Right now, I'm playing Runebound with Liz -- so I'm definitely happy. (She's in the lead at the moment, but we shall see...)
Anyhow, back to negative vibes...grrrrrr.
So, there's just been too many minor annoyances, too consistently, and for too long now. So now I have to sleep with oxygen on? Ok, no prob. So now I have to be plugged into an O2 meter at all times -- yet another thing to be unplugged when you go to the bathroom. Ok... So now I have to have my PICC line removed because you think it might be the thing causing my low fevers? Argh! Now I have to go back to IV?!?!? After all this effort getting 4 different lines installed? Plus, my veins are all in hiding now -- how are they going to find them? Poke and play?
Then, of course, there's the myriad of side effects from the BMT. But you've heard all about those... except, I'm just about to go crazy because of this mouth pain! It's terrible! My global mouth pain is pretty much gone -- which is nice, but it didn't account for more than 10% of my mouth pain. I got this thing to the base of the left side of the tongue. It is PROFOUND how much pain can be registered in such a small space.
So, I can't talk more than a few words at a time, and always at a cost of pain...
I want to TALK! It's extremely frustrating to be around the people you love the most in the world and feeling like you can't have fun/be fun around them because you have to optimize your words to a caveman level. I like to employ wit and scarcasm -- I can't do that if the pain is too rough!
Then there's sleep. I need sleep! The nurses waking you up every 30 minutes is fine; the alarms on the IV pole every 60 minutes is a bit rough (because the nurses take 10-30minutes to get there); the alarms on the O2 meter every time you need to go to the bathroom is doable... but being extremely tired, falling to blissful slumber and waking up in under 5 minutes EVERY TIME to
mouth pain is enough to drive one mad.
I also want to EAT! I haven't eaten in forever! I want a bacon double cheeseburger, and, unlike most patients here, actually relish the thought of eating it. If I didn't have the pain, I'd eat it now!
All this... is enough to make one depressed and quite frustrated.
WBC: 27.9
HCT: 26.1
Platelets: 36,000
[5:28pm]
Too much complaining; don't read.
I'm in a foul mood. Well, more accurately, I've been in a foul mood... for what seems like days now.
Right now, I'm playing Runebound with Liz -- so I'm definitely happy. (She's in the lead at the moment, but we shall see...)
Anyhow, back to negative vibes...grrrrrr.
So, there's just been too many minor annoyances, too consistently, and for too long now. So now I have to sleep with oxygen on? Ok, no prob. So now I have to be plugged into an O2 meter at all times -- yet another thing to be unplugged when you go to the bathroom. Ok... So now I have to have my PICC line removed because you think it might be the thing causing my low fevers? Argh! Now I have to go back to IV?!?!? After all this effort getting 4 different lines installed? Plus, my veins are all in hiding now -- how are they going to find them? Poke and play?
Then, of course, there's the myriad of side effects from the BMT. But you've heard all about those... except, I'm just about to go crazy because of this mouth pain! It's terrible! My global mouth pain is pretty much gone -- which is nice, but it didn't account for more than 10% of my mouth pain. I got this thing to the base of the left side of the tongue. It is PROFOUND how much pain can be registered in such a small space.
So, I can't talk more than a few words at a time, and always at a cost of pain...
I want to TALK! It's extremely frustrating to be around the people you love the most in the world and feeling like you can't have fun/be fun around them because you have to optimize your words to a caveman level. I like to employ wit and scarcasm -- I can't do that if the pain is too rough!
Then there's sleep. I need sleep! The nurses waking you up every 30 minutes is fine; the alarms on the IV pole every 60 minutes is a bit rough (because the nurses take 10-30minutes to get there); the alarms on the O2 meter every time you need to go to the bathroom is doable... but being extremely tired, falling to blissful slumber and waking up in under 5 minutes EVERY TIME to
mouth pain is enough to drive one mad.
I also want to EAT! I haven't eaten in forever! I want a bacon double cheeseburger, and, unlike most patients here, actually relish the thought of eating it. If I didn't have the pain, I'd eat it now!
All this... is enough to make one depressed and quite frustrated.
Friday, November 14, 2008
[11-14-08] The System is Down (Day +11)
[6:32pm]
Here's my counts:
WBC: 6.9 (1.3 yesterday)
Hematocrit: 28.6 (29.0 yesterday)
Platelets: 20,000 (16,000 yesterday)
This is going to be a short post because... duhn duhn DUHN... THE INTERNET IS OUT!!! NOOOOOOOOOOOOOOOooooooooo
Something went awry with the medical network yesterday. Nurses were waiting in line to use the printer, because they had to record everything on paper. They would no longer use their fancy "vitals machine". (which combines an automated blood pressure cuff, a digital thermometer, an O2 Saturation probe, and a computer to automate, record, and transmit the information down those network pipes.)
In other words, if you hit the call button in an effort to get more water, be prepared to repeat your request and wait several hours. Well, that's not entirely true -- some nurses adapt better than others.
What is interesting about this network disaster is that the free public wireless was working fine throughout the day. The next day, when they finally fix the network, the public wireless fails utterly. And that's where I'm at -- I've been on the phone with the techs -- they say it should be fixed by tomorrow.
In the meantime, I've been using some unreliable 1-bar public wireless from (I believe) a hospital nearby. It's a bit frustrating.
So, here is a bit of news for the day:
Mouth is finally beginning to heal! Maybe tomorrow I'll be able to speak like a real human!
Continuous portion of pain meds discontinued (clicking on-demand still works)! Earlier today, they decided to cut the continuous portion in half to ween me off the Fentanyl. When it was revealed that my problems going #1 were due to the continuous dose, I jumped on the idea of removing it entirely.
I may be discharged early -- the doctors pointed to the 18th on the calendar. However, some of the requirements were that:
1:I had no pain so severe that pain management was necessary (so mouth gets better). Alternative Interpretation: No dependence on pain meds.
2:Able to eat! (Again, mouth gets better)
3:No Fever
That is all.
Here's my counts:
WBC: 6.9 (1.3 yesterday)
Hematocrit: 28.6 (29.0 yesterday)
Platelets: 20,000 (16,000 yesterday)
This is going to be a short post because... duhn duhn DUHN... THE INTERNET IS OUT!!! NOOOOOOOOOOOOOOOooooooooo
Something went awry with the medical network yesterday. Nurses were waiting in line to use the printer, because they had to record everything on paper. They would no longer use their fancy "vitals machine". (which combines an automated blood pressure cuff, a digital thermometer, an O2 Saturation probe, and a computer to automate, record, and transmit the information down those network pipes.)
In other words, if you hit the call button in an effort to get more water, be prepared to repeat your request and wait several hours. Well, that's not entirely true -- some nurses adapt better than others.
What is interesting about this network disaster is that the free public wireless was working fine throughout the day. The next day, when they finally fix the network, the public wireless fails utterly. And that's where I'm at -- I've been on the phone with the techs -- they say it should be fixed by tomorrow.
In the meantime, I've been using some unreliable 1-bar public wireless from (I believe) a hospital nearby. It's a bit frustrating.
So, here is a bit of news for the day:
Mouth is finally beginning to heal! Maybe tomorrow I'll be able to speak like a real human!
Continuous portion of pain meds discontinued (clicking on-demand still works)! Earlier today, they decided to cut the continuous portion in half to ween me off the Fentanyl. When it was revealed that my problems going #1 were due to the continuous dose, I jumped on the idea of removing it entirely.
I may be discharged early -- the doctors pointed to the 18th on the calendar. However, some of the requirements were that:
1:I had no pain so severe that pain management was necessary (so mouth gets better). Alternative Interpretation: No dependence on pain meds.
2:Able to eat! (Again, mouth gets better)
3:No Fever
That is all.
Wednesday, November 12, 2008
[11-12-08] Silence (Day +9)
[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!
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!
Tuesday, November 11, 2008
[11-11-08] Mourn the Eyebrows (Day +8)
[Counts]
Here's my counts:
WBC: 0.2 (0.1 yesterday)
Hematocrit: 26.5 (29.2 yesterday): 2 Units Blood Later
Platelets: 9,000 (18,000 yesterday): Platelet Transfusion Later
Hemoglobin: 9.2 (10.5 yesterday)
[4:17pm]
Yesterday, to my delight, I had discovered that my hair was falling out again. I was delighted, of course, because it triggered the whole "chemo is working because..." emotion. It wasn't a slow loss, either -- the tiny blond hairs that had started to grow back were coming out in clumps. Following tradition, I proceeded to shave with my fingers (pinching).
Today, I was shocked to discover that I had no eyebrows. I don't know why I wasn't prepared for this: I recognized that the eyebrows were thinning, but I didn't think they'd all disappear entirely overnight! Oh well, they are gone.
I always said that I would have the most difficulty losing the eyebrow hair. This is mainly because it is an unavoidable cancer giveaway. Having a bald head can simply be a fashion statement; no one intentionally shaves their eyebrows.
So, now, I can't simply pretend that I don't have cancer when I'm out in public. It's funny though... now that I've been through so many painful, embarassing, or humiliating situations... I could really care less about not having any eyebrows.
Barbara just arrived, so I'm gonna hang out instead of ranting further!
P.S. I just realized -- no eyebrows indicated that I went through cancer treatment... As of now, there's a good chance I no longer have cancer. That's a good thought.
Here's my counts:
WBC: 0.2 (0.1 yesterday)
Hematocrit: 26.5 (29.2 yesterday): 2 Units Blood Later
Platelets: 9,000 (18,000 yesterday): Platelet Transfusion Later
Hemoglobin: 9.2 (10.5 yesterday)
[4:17pm]
Yesterday, to my delight, I had discovered that my hair was falling out again. I was delighted, of course, because it triggered the whole "chemo is working because..." emotion. It wasn't a slow loss, either -- the tiny blond hairs that had started to grow back were coming out in clumps. Following tradition, I proceeded to shave with my fingers (pinching).
Today, I was shocked to discover that I had no eyebrows. I don't know why I wasn't prepared for this: I recognized that the eyebrows were thinning, but I didn't think they'd all disappear entirely overnight! Oh well, they are gone.
I always said that I would have the most difficulty losing the eyebrow hair. This is mainly because it is an unavoidable cancer giveaway. Having a bald head can simply be a fashion statement; no one intentionally shaves their eyebrows.
So, now, I can't simply pretend that I don't have cancer when I'm out in public. It's funny though... now that I've been through so many painful, embarassing, or humiliating situations... I could really care less about not having any eyebrows.
Barbara just arrived, so I'm gonna hang out instead of ranting further!
P.S. I just realized -- no eyebrows indicated that I went through cancer treatment... As of now, there's a good chance I no longer have cancer. That's a good thought.
Monday, November 10, 2008
[11-10-08] Totally Acclimated (Day +7)
[10:52am]
Here's my counts:
WBC: 0.1 (0.1 yesterday)
Hematocrit: 29.2 (29.5 yesterday)
Platelets: 18,000 (32,000 yesterday)
Hemoglobin: 10.5 (10.5 yesterday)
So, I haven't entered the "recovery phase" yet. Basically, I've been told that once the WBC starts to go up, then I will have begun recovery and all my symptoms will begin to improve.
Naturally, I'm paying a lot of attention to when that day occurs -- I look forward to a reduction in "mouth pain." (The only other major symptom is the myriad of skin problems.)
***
It was only a week ago that I had my stem-cell transplant -- for me, it seems like the time has flown by. I guess that's a darn good thing to feel -- that time flies in the BMT ward. Probably a bit unusual too...
Pre-transplant was a different story -- that was generally a pretty rough time (The ICU, the chemo, the nausea/vomiting). On the other hand, once I was moved into isolation (single room) things rapidly got much better. By then I was only concerned with skin problems and mouth pain. Once I began Fentanyl for mouth pain and religiously began applying skin care stuff, I found that I was no longer counting the days until departure... time was moving faster; I was enjoying myself.
I guess my point is that I have completely acclimated myself to my particular room in the BMT ward. I have an established routine For the time being, this is my new home. It is nice.
Here's my counts:
WBC: 0.1 (0.1 yesterday)
Hematocrit: 29.2 (29.5 yesterday)
Platelets: 18,000 (32,000 yesterday)
Hemoglobin: 10.5 (10.5 yesterday)
So, I haven't entered the "recovery phase" yet. Basically, I've been told that once the WBC starts to go up, then I will have begun recovery and all my symptoms will begin to improve.
Naturally, I'm paying a lot of attention to when that day occurs -- I look forward to a reduction in "mouth pain." (The only other major symptom is the myriad of skin problems.)
***
It was only a week ago that I had my stem-cell transplant -- for me, it seems like the time has flown by. I guess that's a darn good thing to feel -- that time flies in the BMT ward. Probably a bit unusual too...
Pre-transplant was a different story -- that was generally a pretty rough time (The ICU, the chemo, the nausea/vomiting). On the other hand, once I was moved into isolation (single room) things rapidly got much better. By then I was only concerned with skin problems and mouth pain. Once I began Fentanyl for mouth pain and religiously began applying skin care stuff, I found that I was no longer counting the days until departure... time was moving faster; I was enjoying myself.
I guess my point is that I have completely acclimated myself to my particular room in the BMT ward. I have an established routine For the time being, this is my new home. It is nice.
Friday, November 7, 2008
[11-07-08] Things are Great (Day +4)
[7:19am]
Let's see... time for yet another update on my general well-being and state of mind.
Physically, the mucositis has deteriorated to epic levels. I tried to take a ship of chilled milk this morning, but it literally scalded my mouth. Just out of curiosity, I pondered to myself how could something that is chilled taste like simmering water. Then, I proceeded to mouth the words "hot, hot, hot" as I'm fanning my mouth with my palm -- sign language for "I just ate a whole heap of Jalapeno Peppers," I'm sure.
But even without food/beverage, just repositioning my mouth alone can cause quite severe pain. Talking is very, very difficult. And, as Barbara has said, I've learned that certain words be only said through clenched teeth, for safety purposes.
Still, Fentanyl is my friend. And as Dan said in his previous email: "Hang in there bro...click......click....click...clickclickclick."
I couldn't agree more
However, there's the painful mental acuity vs. stupid and painfree tradeoff. To those used to my writing, it may be painfully obvious that I've been clicking the pain away. I keep nearly dozing off mid-sentence, so this may be an entry best kept short.
Then there's the myriad of skin problems. Now, just the phrase "skin problems" sounds like it can be treated with little more than daily moisturer and some SPF 10.
So let me rephrase that: "There's the myriad of skin/host rebellions with a scattered collection of skin terrorist splinter cells."
That's better. My chest looks like it's been subjected to an Iron Maiden with a sort of chicken pox.
But, I believe I went into a little detail yesterday, so I'll spare ye. Lets just say I've been vigilant!
Anyhow, nausea is at a low because I'm not eating much! Woohoo! Err, I take that back, completely. I was about to take pills while entering a blog entry, but nearly threw up. So, nausea's not completely gone. But I'm getting tired, so I'll just summarize like this: My symptoms are getting worse. My management of those symptoms has gone through the roof on both an emotional and a chemical level. In short: Things are great!
my Things are going smashingly well!
Let's see... time for yet another update on my general well-being and state of mind.
Physically, the mucositis has deteriorated to epic levels. I tried to take a ship of chilled milk this morning, but it literally scalded my mouth. Just out of curiosity, I pondered to myself how could something that is chilled taste like simmering water. Then, I proceeded to mouth the words "hot, hot, hot" as I'm fanning my mouth with my palm -- sign language for "I just ate a whole heap of Jalapeno Peppers," I'm sure.
But even without food/beverage, just repositioning my mouth alone can cause quite severe pain. Talking is very, very difficult. And, as Barbara has said, I've learned that certain words be only said through clenched teeth, for safety purposes.
Still, Fentanyl is my friend. And as Dan said in his previous email: "Hang in there bro...click......click....click...clickclickclick."
I couldn't agree more
However, there's the painful mental acuity vs. stupid and painfree tradeoff. To those used to my writing, it may be painfully obvious that I've been clicking the pain away. I keep nearly dozing off mid-sentence, so this may be an entry best kept short.
Then there's the myriad of skin problems. Now, just the phrase "skin problems" sounds like it can be treated with little more than daily moisturer and some SPF 10.
So let me rephrase that: "There's the myriad of skin/host rebellions with a scattered collection of skin terrorist splinter cells."
That's better. My chest looks like it's been subjected to an Iron Maiden with a sort of chicken pox.
But, I believe I went into a little detail yesterday, so I'll spare ye. Lets just say I've been vigilant!
Anyhow, nausea is at a low because I'm not eating much! Woohoo! Err, I take that back, completely. I was about to take pills while entering a blog entry, but nearly threw up. So, nausea's not completely gone. But I'm getting tired, so I'll just summarize like this: My symptoms are getting worse. My management of those symptoms has gone through the roof on both an emotional and a chemical level. In short: Things are great!
my Things are going smashingly well!
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
Sunday, November 2, 2008
[11-02-08] Queasy Buddha (Day -1)
[7:17pm]
I originally wasn't going to post today -- the world was just too bleak. My stomach pain/queasiness/discomfort/whatever was distressing every aspect of my life -- not like you need to vomit, but that you're just sick in the stomach.
I spent basically the entire day trying to combat it. Chugging Maalox, repeatedly going to the bathroom, sleeping, lying still, concentrating... anything! Eventually, I game to realize that the only practical strategy was unconsciousness.
So, when poor Liz came to visit me, I wasn't very good company. I pretty much slept most of the time. But what else could I do?
What's worse is that I began to get depressed about this. 3 more weeks of this sort of stomach sickness was an unbearable thought -- but what could be done?
Enter the brilliant doctors and their brilliant drugs.
It turns out, that my GI tract is all messed up due to the chemo. So, it's not your normal "flu" like symptoms that is causing my queasiness. The doctors prescribed a gnarly painkiller called Dilaudid, and it works great! All of a sudden, I feel like my life has returned to me! I can concentrate enough to type in my blog, or watch a bit of TV, or play some video games -- it's wonderful!
I'm staying on this stuff. And it's not recreational or anything like that, I'm just happy to not be suffering. It's Buddhist philosophy: "Without suffering, there is no happiness." [Edit: Apparently I'm completely wrong here, so, instead just consider the quote my personal philosophy] Well, my absence of suffering is making me damn happy right now.
I originally wasn't going to post today -- the world was just too bleak. My stomach pain/queasiness/discomfort/whatever was distressing every aspect of my life -- not like you need to vomit, but that you're just sick in the stomach.
I spent basically the entire day trying to combat it. Chugging Maalox, repeatedly going to the bathroom, sleeping, lying still, concentrating... anything! Eventually, I game to realize that the only practical strategy was unconsciousness.
So, when poor Liz came to visit me, I wasn't very good company. I pretty much slept most of the time. But what else could I do?
What's worse is that I began to get depressed about this. 3 more weeks of this sort of stomach sickness was an unbearable thought -- but what could be done?
Enter the brilliant doctors and their brilliant drugs.
It turns out, that my GI tract is all messed up due to the chemo. So, it's not your normal "flu" like symptoms that is causing my queasiness. The doctors prescribed a gnarly painkiller called Dilaudid, and it works great! All of a sudden, I feel like my life has returned to me! I can concentrate enough to type in my blog, or watch a bit of TV, or play some video games -- it's wonderful!
I'm staying on this stuff. And it's not recreational or anything like that, I'm just happy to not be suffering. It's Buddhist philosophy: "Without suffering, there is no happiness." [Edit: Apparently I'm completely wrong here, so, instead just consider the quote my personal philosophy] Well, my absence of suffering is making me damn happy right now.
Saturday, November 1, 2008
[11-01-08] Cytoxan (Day -2)
[10:55am]
I forgot: this is supposed to be Christmas! This is what I've been looking for: BMT Fantasyland, where you can just sit back, take your pills, and have your cancer melt away. Nothing is further from the truth.
Everything in here is a little battle. Taking your pills in the morning without vomiting is a battle. Fighting to get your anti-emetics is a battle. Just surviving all this is a battle.
I've come out of the ICU with some battle-damage: A few more scars (one from a removed catheter), an IV placed in my hand, and a weird three-pronged catheter in my neck. Then I was sent home, to the BMT unit. Two transfusions later, I'm feeling a little more energetic, but still I am feeling persistently nauseated. I guess that's how things go around here: a battlezone and a balancing act.
I just hope it gets better. Unrealistic, I know -- but this is putting my body through quite an ordeal. I can't wait to see Liz :P
[2:30]
We started the Cytoxan about an hour ago. Back then, the prospect of more chemo was faced with a good deal of dread. I had nausea and quite an upset stomach -- I couldn't fathom things getting any worse... But, like a good little boy, I took my pre-meds and started the chemo and fell asleep.
I woke up feeling great! I mean, not normal great, but the difference between then and now was profound. So, I'm eating and writing on my blog! Eating cheetos and chicken noodle soup! I haven't eaten like this for days -- it's great! I'm joyful.
Hmmm... On another note, I think I can feel the mucositis starting to creep in -- it not like sores, it seems, but a general sensitivity in the mouth. After my meal of cheetos and soup, it feels like I just had a bunch of Jalapeno peppers... Right now it is just interesting to notice, I'm sure it'll become a huge problem in the future -- they all say it does.
Health Status: Blood Pressure is up, and I have normal temp! Woot!
I forgot: this is supposed to be Christmas! This is what I've been looking for: BMT Fantasyland, where you can just sit back, take your pills, and have your cancer melt away. Nothing is further from the truth.
Everything in here is a little battle. Taking your pills in the morning without vomiting is a battle. Fighting to get your anti-emetics is a battle. Just surviving all this is a battle.
I've come out of the ICU with some battle-damage: A few more scars (one from a removed catheter), an IV placed in my hand, and a weird three-pronged catheter in my neck. Then I was sent home, to the BMT unit. Two transfusions later, I'm feeling a little more energetic, but still I am feeling persistently nauseated. I guess that's how things go around here: a battlezone and a balancing act.
I just hope it gets better. Unrealistic, I know -- but this is putting my body through quite an ordeal. I can't wait to see Liz :P
[2:30]
We started the Cytoxan about an hour ago. Back then, the prospect of more chemo was faced with a good deal of dread. I had nausea and quite an upset stomach -- I couldn't fathom things getting any worse... But, like a good little boy, I took my pre-meds and started the chemo and fell asleep.
I woke up feeling great! I mean, not normal great, but the difference between then and now was profound. So, I'm eating and writing on my blog! Eating cheetos and chicken noodle soup! I haven't eaten like this for days -- it's great! I'm joyful.
Hmmm... On another note, I think I can feel the mucositis starting to creep in -- it not like sores, it seems, but a general sensitivity in the mouth. After my meal of cheetos and soup, it feels like I just had a bunch of Jalapeno peppers... Right now it is just interesting to notice, I'm sure it'll become a huge problem in the future -- they all say it does.
Health Status: Blood Pressure is up, and I have normal temp! Woot!
Thursday, October 30, 2008
[10-30-08] VP-16 (Day -4)
[10:50am]
I've forgotten to mention some of the more important side-effects since I've been admitted here... As always, for the sake of accuracy, I will go into further detail.
Firstly, I haven't really been able to eat anything. Surprisingly, this distresses doctors far less than one would think. Sure, I can eat a few bites of Jello here and there, milks, or a few applesauces, but nothing really substantial. The doctor's have mentioned TPN (which is basically IV nutrients), but they seem to think that it is not necessary as long as I eat something.
Perhaps as a corollary to the first, I have been sans-poop for the past 3 days. This, on the other hand, has the doctors quite concerned. They are giving me lots of pills for this: senna, colace, laxatives, etc... Nada.
The nurse told me that it was especially important to have a bowel movement today. So, I was trying to force myself to eat some actual food this morning... thinking high intake equals high output... or some such nonsense. After eating the obligatory Jello and applesauce, I began a daring move to the eggs and bacon. It was a valiant effort, but I just couldn't swallow it. Next, I thought to myself how I was strangely able to eat a bag of Cheetos last night. So, I went for the Cheetos.
Cheetos and Jello don't mix. I quickly hollered for the Ativan, but I was too late... I vomited what little food I had. *sigh*
The nurse recommended I try some ensure, so I'll try that next.
The other side effect has been fevers! I've been having daily and nightly fevers since I have arrived here. Sometime I just coast at 100.4, and sometimes I spike higher. Even if the fevers are not worthy for intervention, they are quite annoying! They give me such a headache, and I can't take any Tylenol because they want me to get a high enough fever for a blood culture... or something (They give you Tylenol if it goes high enough, of course).
The fevers also give me this pain behind the eyes, and make it quite hard to focus on anything.
Anyhow, it's all a bunch of mini-battles. Now onto the larger one: The VP-16! (Update Later)
I've forgotten to mention some of the more important side-effects since I've been admitted here... As always, for the sake of accuracy, I will go into further detail.
Firstly, I haven't really been able to eat anything. Surprisingly, this distresses doctors far less than one would think. Sure, I can eat a few bites of Jello here and there, milks, or a few applesauces, but nothing really substantial. The doctor's have mentioned TPN (which is basically IV nutrients), but they seem to think that it is not necessary as long as I eat something.
Perhaps as a corollary to the first, I have been sans-poop for the past 3 days. This, on the other hand, has the doctors quite concerned. They are giving me lots of pills for this: senna, colace, laxatives, etc... Nada.
The nurse told me that it was especially important to have a bowel movement today. So, I was trying to force myself to eat some actual food this morning... thinking high intake equals high output... or some such nonsense. After eating the obligatory Jello and applesauce, I began a daring move to the eggs and bacon. It was a valiant effort, but I just couldn't swallow it. Next, I thought to myself how I was strangely able to eat a bag of Cheetos last night. So, I went for the Cheetos.
Cheetos and Jello don't mix. I quickly hollered for the Ativan, but I was too late... I vomited what little food I had. *sigh*
The nurse recommended I try some ensure, so I'll try that next.
The other side effect has been fevers! I've been having daily and nightly fevers since I have arrived here. Sometime I just coast at 100.4, and sometimes I spike higher. Even if the fevers are not worthy for intervention, they are quite annoying! They give me such a headache, and I can't take any Tylenol because they want me to get a high enough fever for a blood culture... or something (They give you Tylenol if it goes high enough, of course).
The fevers also give me this pain behind the eyes, and make it quite hard to focus on anything.
Anyhow, it's all a bunch of mini-battles. Now onto the larger one: The VP-16! (Update Later)
Monday, October 27, 2008
[10-27-08] The Early Bird
[2:37pm]
Yesterday was crazy.
It started with my dose of Gemcitabine and Navelbine -- both drugs that I tolerated relatively well last time... well, except for a headache.
Yesterday started out no differently, but it quickly turned South. It started out with some pretty bad bathroom-related problems, then ended up turning into some pretty annoying nausea and general icky feeling.
At around 8pm, the nausea got worse and I could feel that familiar burning sensation in my eyes -- I knew I had a fever. The temperature read 100.4, so I decided to take some Tylenol and check again in 20 minutes or so. The second reading was 101.4, so we decided to head to Stanford.
The thing is: I knew that this fever was due to the Gemcitabine/NAvelbine -- in fact, my nurse told me to ignore any fevers that I may get for the first dose of these two drugs. But, since I am so close to the transplant time, it's better safe than sorry.
We walked right into the BMT unit and I presented myself. I told the nurse that I was instructed to report to the BMT unit if I had a fever for my second dose of this chemo, and that it was probably caused by the chemo. Apparently, I should've called first. Strange, I thought they explicitly that I didn't need to call first -- "Do not pass go, head straight to BMT ward."
But that wasn't the first mistake I made this evening. I also shouldn't have taken the Tylenol -- since my fever could be naturally be higher than it was at present. Then the nurse asked: "Where's your mask?" Apparently, I was supposed to be wearing it this week, even though my white counts were perfectly fine. Ack! Oh well...
So, the nurse decided to admit me. She also had to call the attending physician -- who had to drive from her home in San Francisco at 10:30pm -- to evaluate me. By then my fever was 102.0.
They hooked me up on various fluids and anti-biotics, and re-checked my vitals every 20 minutes or so. I also had more Tylenol, but my fever would not budge one bit. In addition, my nausea seemed to get worse along with the fever -- I couldn't lie down because that would make me feel sick. Mostly, I tried not to move. Then, my mom went home to collect my belongings and bring them to the hospital.
Things got even more frantic when they noticed that my blood pressure had dropped to 86/40, when it was normally 125/70. They restricted me to my bed and kept asking whether the room was spinning or that I felt dizzy. I only felt a bit dizzy when I stood up, but I did feel a bit weird. Then more bags of stuff were brought in and I had my vitals all throughout. They also did some blood cultures and urinanalysis.
Long story short: it was a very tough night. I had an interruption every 15 minutes or so -- it made sleep quite difficult.
Fortunately, my fever broke around 9:00am this morning and I feel much better. My blood pressure is normal. All that's left is a food-phobia and headache. By food-phobia, I mean that the mere concept of eating real food makes me feel a bit sick. Get this: I had eggs and bacon this morning, and I didn't eat anything, including the bacon! You know there's something wrong when I don't eat my beloved bacon.
So, all I've been eating today is Jello and Apple Sauce. I'm actually quite hungry, but what can I do?
The strange thing is that I've never had an aversion to food, even throughout all the chemo I've had. Why start now? Gemcitabine and Navelbine are truly vicious drugs.
So, anyhow, I've been admitted into the BMT ward and will be placed in my isolation room later today. My in-patient BMT starts early!
I think to myself: After last night, I'm in for quite a tough ride. It's only going to get worse from here on out.
It brings to mind what my doctor said when he went on rounds today. He told me about how they like to do psychiatric consults early in the BMT process, so that "you can answer coherently because you wont be on a bunch of pain medications yet." So it looks like I can expect a level of pain that would require a lot of gnarly medications. Eep!
[5:53pm]
Mwa ha ha! Large interweb pipes; Austin happy.
Yesterday was crazy.
It started with my dose of Gemcitabine and Navelbine -- both drugs that I tolerated relatively well last time... well, except for a headache.
Yesterday started out no differently, but it quickly turned South. It started out with some pretty bad bathroom-related problems, then ended up turning into some pretty annoying nausea and general icky feeling.
At around 8pm, the nausea got worse and I could feel that familiar burning sensation in my eyes -- I knew I had a fever. The temperature read 100.4, so I decided to take some Tylenol and check again in 20 minutes or so. The second reading was 101.4, so we decided to head to Stanford.
The thing is: I knew that this fever was due to the Gemcitabine/NAvelbine -- in fact, my nurse told me to ignore any fevers that I may get for the first dose of these two drugs. But, since I am so close to the transplant time, it's better safe than sorry.
We walked right into the BMT unit and I presented myself. I told the nurse that I was instructed to report to the BMT unit if I had a fever for my second dose of this chemo, and that it was probably caused by the chemo. Apparently, I should've called first. Strange, I thought they explicitly that I didn't need to call first -- "Do not pass go, head straight to BMT ward."
But that wasn't the first mistake I made this evening. I also shouldn't have taken the Tylenol -- since my fever could be naturally be higher than it was at present. Then the nurse asked: "Where's your mask?" Apparently, I was supposed to be wearing it this week, even though my white counts were perfectly fine. Ack! Oh well...
So, the nurse decided to admit me. She also had to call the attending physician -- who had to drive from her home in San Francisco at 10:30pm -- to evaluate me. By then my fever was 102.0.
They hooked me up on various fluids and anti-biotics, and re-checked my vitals every 20 minutes or so. I also had more Tylenol, but my fever would not budge one bit. In addition, my nausea seemed to get worse along with the fever -- I couldn't lie down because that would make me feel sick. Mostly, I tried not to move. Then, my mom went home to collect my belongings and bring them to the hospital.
Things got even more frantic when they noticed that my blood pressure had dropped to 86/40, when it was normally 125/70. They restricted me to my bed and kept asking whether the room was spinning or that I felt dizzy. I only felt a bit dizzy when I stood up, but I did feel a bit weird. Then more bags of stuff were brought in and I had my vitals all throughout. They also did some blood cultures and urinanalysis.
Long story short: it was a very tough night. I had an interruption every 15 minutes or so -- it made sleep quite difficult.
Fortunately, my fever broke around 9:00am this morning and I feel much better. My blood pressure is normal. All that's left is a food-phobia and headache. By food-phobia, I mean that the mere concept of eating real food makes me feel a bit sick. Get this: I had eggs and bacon this morning, and I didn't eat anything, including the bacon! You know there's something wrong when I don't eat my beloved bacon.
So, all I've been eating today is Jello and Apple Sauce. I'm actually quite hungry, but what can I do?
The strange thing is that I've never had an aversion to food, even throughout all the chemo I've had. Why start now? Gemcitabine and Navelbine are truly vicious drugs.
So, anyhow, I've been admitted into the BMT ward and will be placed in my isolation room later today. My in-patient BMT starts early!
I think to myself: After last night, I'm in for quite a tough ride. It's only going to get worse from here on out.
It brings to mind what my doctor said when he went on rounds today. He told me about how they like to do psychiatric consults early in the BMT process, so that "you can answer coherently because you wont be on a bunch of pain medications yet." So it looks like I can expect a level of pain that would require a lot of gnarly medications. Eep!
[5:53pm]
Mwa ha ha! Large interweb pipes; Austin happy.
Thursday, October 2, 2008
[10-02-08] Catheter Placement #2
[10:21pm]
Things have been ridiculous...
First, I've been getting very little sleep lately. Catheter pain has been preventing me from sleeping on my side. Since I can only sleep on my side, this has been problematic for the past week or so. But last night was ridiculous.
If it wasn't catheter pain keeping me up, then it was my insane Neupogen-related back pain. If it wasn't that, it was a slight fever (100.3). And, of course, we were on tiptoes because a fever of 100.5 or above merits an ER visit. So I got next to no sleep last night.
Second, I am not supposed to eat 12 hours before the procedure. So no food for me after midnight (what am I, a gremlin?).
Accordingly, you have a starving neutropenic anemic patient that is just recovering from a fever and complete lack of sleep. That is my explanation for my decrepit state today. AFter the 2nd transfusion: feeling much better. After no sleep and no food: feeling not so good.
To articulate, I recall lying on the hospital bed. My back was killing me, so I repositioned myself so that I was sitting upright. That act alone raised my pulse to 120, gave me an insta-headache (due to lack of oxygen to brain), broke a sweat, and caused me to wheeze rapidly for 5 minutes or so.
Yes, it was ridiculous! I had to take 3 breaks on the way to my procedure and I was pushing myself so hard that I got lost. Barbara commented that I wasn't thinking straight due to lack of oxygen. From that point on, I was so tired I was docile. You could have said that Palin was smarter than Einstein and I probably would've nodded noncommittally.
The procedure itself was much better than last time. They couldn't figure out why I had catheter pain and defective blood return -- the x-rays all looked perfect. Regardless, the best course of action was decided: remove the "defective" catheter and place a new one on the other side of the chest.
So that's what they did.
Also, I made sure to articulate that lots of pain was not acceptable. They want to distinguish between sharp pain and pulling/pushing. For some reason, they believe that "dull" pain associated with pushing/pulling did not exist -- that the mind somehow interpreted this weird pushing feeling as pain or something. This was told to me by several nurses and the doctor, so I took it seriously. I remember sitting there on the table saying, "Yup that's pain. It's a dull pain, and I know you're pushing/pulling, but it's still pain. Yup, that hurts. And I'm trying to be especially objective here." Or some such.
Still, everything went wonderfully. In fact, the catheter was placed on the right side of my chest with little pain at all. Removing the previous catheter... that's where extra time was spent. Something was wrong about that side; maybe it's because the big tumor is there... or my veins are sensitive on that side or something. Who knows.
And the nurses were crazy. They were all female jokesters -- casually engaging in banter while singing along to their Mo'town CD. I recall on several occasions them saying something like: "Glad you probably wont remember this; I'd hate to see the look on your mom's face when you tell her that you were cut up by a bunch of crazy dancin' nurses." I assured them that I would remember everything; they didn't believe me.
At one point, the doctor asked the nurse "how is he doing?" (The doctor can't see my head because a big blue sheet is draped over it). She replied, "Wow, he's actually crying!" I heard the doctor, startled, say "what?!?" And I said, "Hey, I'm not crying!" The nurse smiled.
At another point, they tried to get me to sing along with a Mo'town song. I told them: "You haven't given me nearly enough drugs to get me to do that!" They laughed and said, "Is that a challenge?" Flatly, I replied, "Yes." Then I pointed out the ethics of making a drugged patient entertain the nurses.
After the procedure, I got a call from the apheresis nurse: "You've been having lots of bone pain, right?"
"How did you know?"
"Your white blood count went from 1 to 12 in a single day; your marrow has been working overtime."
So, yay! I get apheresis tomorrow! Naturally, they want us there at 7:30am. So I'll have to get up at 5 or so. I better get some sleep.
Things have been ridiculous...
First, I've been getting very little sleep lately. Catheter pain has been preventing me from sleeping on my side. Since I can only sleep on my side, this has been problematic for the past week or so. But last night was ridiculous.
If it wasn't catheter pain keeping me up, then it was my insane Neupogen-related back pain. If it wasn't that, it was a slight fever (100.3). And, of course, we were on tiptoes because a fever of 100.5 or above merits an ER visit. So I got next to no sleep last night.
Second, I am not supposed to eat 12 hours before the procedure. So no food for me after midnight (what am I, a gremlin?).
Accordingly, you have a starving neutropenic anemic patient that is just recovering from a fever and complete lack of sleep. That is my explanation for my decrepit state today. AFter the 2nd transfusion: feeling much better. After no sleep and no food: feeling not so good.
To articulate, I recall lying on the hospital bed. My back was killing me, so I repositioned myself so that I was sitting upright. That act alone raised my pulse to 120, gave me an insta-headache (due to lack of oxygen to brain), broke a sweat, and caused me to wheeze rapidly for 5 minutes or so.
Yes, it was ridiculous! I had to take 3 breaks on the way to my procedure and I was pushing myself so hard that I got lost. Barbara commented that I wasn't thinking straight due to lack of oxygen. From that point on, I was so tired I was docile. You could have said that Palin was smarter than Einstein and I probably would've nodded noncommittally.
The procedure itself was much better than last time. They couldn't figure out why I had catheter pain and defective blood return -- the x-rays all looked perfect. Regardless, the best course of action was decided: remove the "defective" catheter and place a new one on the other side of the chest.
So that's what they did.
Also, I made sure to articulate that lots of pain was not acceptable. They want to distinguish between sharp pain and pulling/pushing. For some reason, they believe that "dull" pain associated with pushing/pulling did not exist -- that the mind somehow interpreted this weird pushing feeling as pain or something. This was told to me by several nurses and the doctor, so I took it seriously. I remember sitting there on the table saying, "Yup that's pain. It's a dull pain, and I know you're pushing/pulling, but it's still pain. Yup, that hurts. And I'm trying to be especially objective here." Or some such.
Still, everything went wonderfully. In fact, the catheter was placed on the right side of my chest with little pain at all. Removing the previous catheter... that's where extra time was spent. Something was wrong about that side; maybe it's because the big tumor is there... or my veins are sensitive on that side or something. Who knows.
And the nurses were crazy. They were all female jokesters -- casually engaging in banter while singing along to their Mo'town CD. I recall on several occasions them saying something like: "Glad you probably wont remember this; I'd hate to see the look on your mom's face when you tell her that you were cut up by a bunch of crazy dancin' nurses." I assured them that I would remember everything; they didn't believe me.
At one point, the doctor asked the nurse "how is he doing?" (The doctor can't see my head because a big blue sheet is draped over it). She replied, "Wow, he's actually crying!" I heard the doctor, startled, say "what?!?" And I said, "Hey, I'm not crying!" The nurse smiled.
At another point, they tried to get me to sing along with a Mo'town song. I told them: "You haven't given me nearly enough drugs to get me to do that!" They laughed and said, "Is that a challenge?" Flatly, I replied, "Yes." Then I pointed out the ethics of making a drugged patient entertain the nurses.
After the procedure, I got a call from the apheresis nurse: "You've been having lots of bone pain, right?"
"How did you know?"
"Your white blood count went from 1 to 12 in a single day; your marrow has been working overtime."
So, yay! I get apheresis tomorrow! Naturally, they want us there at 7:30am. So I'll have to get up at 5 or so. I better get some sleep.
Wednesday, October 1, 2008
[10-01-08] Blood and Fire
[2:49pm]
Bloooooooood... need more bloooooooood.
I've had my first taste of it; I feel like a vampire. I want more. The effect 250ml of blood has on someone who needs it is profound. I didn't realize it until I got the 2nd transfusion, but I really needed it.
Yes, the 2nd one... I'll back up.
Yesterday, I started with a 2 hour (1 unit) transfusion followed my my normal blood work at another lab. When I got home, I was exhausted, and fell right to sleep. I awoke to a phone call from one of my nurses. "You need another transfusion," she said. Apparently my tiredness correlated quite well with my blood results. Here they are:
Hematocrit 24.3 -> 23.9 (after transfusion)
Hemoglobin 8.5 -> 8.6
WBC 0.3 -> 0.2
Weird, huh? Instead of going up, my hematocrit actually went down! I suppose I'm right at the Cytoxan nadir; imagine what my levels would be if I had no transfusion!
So, today I got another unit of blood. And, unlike yesterday, I actually feel a little more energetic. It's actually mostly mental; I still get just about as winded in my walk to the fridge or bathroom. But what I really notice is my improved concentration and newfound clarity of thought -- I must've been a dunce these past days! And I didn't even realize it!
Next topic: catheter. I hate this catheter. I spend all this time maintaining it and it doesn't even work properly. I mean, the Cytoxan had to be administered via IV because the darn thing wouldn't give blood return. Yesterday, another attempt was made to achieve blood return: it failed. So, I called my Stanford nurse and tried to get this darn thing fixed.
Oh, and blood return isn't the main reason. The truth is that it hurts if I try to lay on either my left or right side. I guess it's because my arms are "squishing" my chest or something? Regardless, I've had many nights of bad/little sleep because the darn thing hurts. And I can't sleep on my stomach or back -- that hurts my stomach! So yet again I am faced a similar dilemma: sleep with pain or no sleep. I've been having to stay up late balancing that equation... no fun.
The good news is that my nurse has scheduled me for a procedure tomorrow! Yay! They're actually going to replace the whole catheter with another one, and use a wire or something to help facilitate it. So it should be a quicker procedure than the last one. I believe it will require conscious sedation or something, because they're telling me not to eat after midnight and whatnot.
Also, Barbara says she's on point with getting my doctors to be liberal with the pain meds. I don't want another couple hours of me complaining (to annoyed staff, I'm sure) that I'm in pain.
The doctor usually tells me that I wont feel any pain before the procedure. When he does this, I'm doing to ask him to tell me his full name, date of birth, and social security number during the procedure. If he's given me enough meds (like he says he will), then I will forget all of it. Otherwise, I will try to comfort my post-trauma with a little identity theft spending spree :P
Last time, they told me that I wouldn't feel a thing and would most likely forget the procedure. P-shaw! I could recite most of the music tracks on that mix CD they were playing (mostly, Beach Boys, btw).
Now that I think about it, the Beach Boys are pretty good. I never realized that until I was forced to listen, in detail, to their music. They have some really melodic slow songs.
I digress.
Last subject: Back Pain.
I think I figured out why I had that ridiculous back pain ER visit a while ago. It was because I was given Neulasta (an extended version of Neupogen). I just started feeling the similar pain yesterday night. Fortunately, it wasn't nearly as bad as last time, but still bad enough so that two Vicodin won't get rid of it (helps, though).
The pain went away this morning, then came back in the middle of my transfusion. Fortunately, my doctor approved some Vicodin for me and I got a prescription called in. Hopefully it will help; if the pain gets any worse I may be screwed.
Believe it or not, my Stanford nurse explains that the pain may be a good thing. It seems that a shot of Neupogen is more effective when more white blood cells are present. In addition, when Neupogen causes your marrow to "work" to make more white blood cells there can be pain. The more your marrow works, the more pain (in some people).
For example, if I had a WBC of 0.1 and took Neupogen, then I would be lucky to get a WBC of 0.3 on the next day. Plus, I probably wouldn't feel any bone pain because my marrow isn't working that hard.
On the other hard, if I took Neupogen with a WBC of 10. Then I could get a WBC of 20 on the next day; my marrow would be smokin'! And there would be a lot of pain. This is what happened after ICE #1 and I had to go to the ER: I was given Neulasta preemptively so that I could get more ICE within two weeks. My WBC at the time was 9, I believe.
Oh, and guess where the most WBC producing marrow is? The region around the lower back...so says my nurse, but I'm still skeptical. Regardless, the lower back is up there, I'm sure.
So, even though I had a WBC of 0.3 yesterday. My nurse is willing to bet that this number jumped dramatically, as indicated by the pain.
Bloooooooood... need more bloooooooood.
I've had my first taste of it; I feel like a vampire. I want more. The effect 250ml of blood has on someone who needs it is profound. I didn't realize it until I got the 2nd transfusion, but I really needed it.
Yes, the 2nd one... I'll back up.
Yesterday, I started with a 2 hour (1 unit) transfusion followed my my normal blood work at another lab. When I got home, I was exhausted, and fell right to sleep. I awoke to a phone call from one of my nurses. "You need another transfusion," she said. Apparently my tiredness correlated quite well with my blood results. Here they are:
Hematocrit 24.3 -> 23.9 (after transfusion)
Hemoglobin 8.5 -> 8.6
WBC 0.3 -> 0.2
Weird, huh? Instead of going up, my hematocrit actually went down! I suppose I'm right at the Cytoxan nadir; imagine what my levels would be if I had no transfusion!
So, today I got another unit of blood. And, unlike yesterday, I actually feel a little more energetic. It's actually mostly mental; I still get just about as winded in my walk to the fridge or bathroom. But what I really notice is my improved concentration and newfound clarity of thought -- I must've been a dunce these past days! And I didn't even realize it!
Next topic: catheter. I hate this catheter. I spend all this time maintaining it and it doesn't even work properly. I mean, the Cytoxan had to be administered via IV because the darn thing wouldn't give blood return. Yesterday, another attempt was made to achieve blood return: it failed. So, I called my Stanford nurse and tried to get this darn thing fixed.
Oh, and blood return isn't the main reason. The truth is that it hurts if I try to lay on either my left or right side. I guess it's because my arms are "squishing" my chest or something? Regardless, I've had many nights of bad/little sleep because the darn thing hurts. And I can't sleep on my stomach or back -- that hurts my stomach! So yet again I am faced a similar dilemma: sleep with pain or no sleep. I've been having to stay up late balancing that equation... no fun.
The good news is that my nurse has scheduled me for a procedure tomorrow! Yay! They're actually going to replace the whole catheter with another one, and use a wire or something to help facilitate it. So it should be a quicker procedure than the last one. I believe it will require conscious sedation or something, because they're telling me not to eat after midnight and whatnot.
Also, Barbara says she's on point with getting my doctors to be liberal with the pain meds. I don't want another couple hours of me complaining (to annoyed staff, I'm sure) that I'm in pain.
The doctor usually tells me that I wont feel any pain before the procedure. When he does this, I'm doing to ask him to tell me his full name, date of birth, and social security number during the procedure. If he's given me enough meds (like he says he will), then I will forget all of it. Otherwise, I will try to comfort my post-trauma with a little identity theft spending spree :P
Last time, they told me that I wouldn't feel a thing and would most likely forget the procedure. P-shaw! I could recite most of the music tracks on that mix CD they were playing (mostly, Beach Boys, btw).
Now that I think about it, the Beach Boys are pretty good. I never realized that until I was forced to listen, in detail, to their music. They have some really melodic slow songs.
I digress.
Last subject: Back Pain.
I think I figured out why I had that ridiculous back pain ER visit a while ago. It was because I was given Neulasta (an extended version of Neupogen). I just started feeling the similar pain yesterday night. Fortunately, it wasn't nearly as bad as last time, but still bad enough so that two Vicodin won't get rid of it (helps, though).
The pain went away this morning, then came back in the middle of my transfusion. Fortunately, my doctor approved some Vicodin for me and I got a prescription called in. Hopefully it will help; if the pain gets any worse I may be screwed.
Believe it or not, my Stanford nurse explains that the pain may be a good thing. It seems that a shot of Neupogen is more effective when more white blood cells are present. In addition, when Neupogen causes your marrow to "work" to make more white blood cells there can be pain. The more your marrow works, the more pain (in some people).
For example, if I had a WBC of 0.1 and took Neupogen, then I would be lucky to get a WBC of 0.3 on the next day. Plus, I probably wouldn't feel any bone pain because my marrow isn't working that hard.
On the other hard, if I took Neupogen with a WBC of 10. Then I could get a WBC of 20 on the next day; my marrow would be smokin'! And there would be a lot of pain. This is what happened after ICE #1 and I had to go to the ER: I was given Neulasta preemptively so that I could get more ICE within two weeks. My WBC at the time was 9, I believe.
Oh, and guess where the most WBC producing marrow is? The region around the lower back...so says my nurse, but I'm still skeptical. Regardless, the lower back is up there, I'm sure.
So, even though I had a WBC of 0.3 yesterday. My nurse is willing to bet that this number jumped dramatically, as indicated by the pain.
Sunday, September 28, 2008
['9-28-08] Looks can be Deceiving
[4:55pm]
Today was somewhat embarrassing. Liz, Barbara, Gloria, and I were planning on attending a symphony. One of the pieces was Rachmaninoff's "Rhapsody on a Theme by Paganini," which is a total selling point for me. So I *had* to go. The downside: I had to wear my HEPA/Vader mask.
Naturally, I was the only one wearing such a thing. So I was really standing out. At first, I panicked about what they thought about me: that I was infected with avian flu or something. But then, I got used to it. It wasn't all that bad, plus Liz was quite comforting.
There was only one comment about it. The guy next to me asked rather bluntly, "So, why the mask? Are you contagious or something?" I told him I wasn't, then he went into a lecture about how masks are necessary for the people in Taiwan or something. Apparently, smog is the least of their concerns.
Of course, during the symphony, my phone was off. During this time, I was getting calls from my local oncologist and Stanford. When I got home, I checked my messages: They got my labs and my blood counts were quite low:
White Blood Count: 0.2 (Basically, I have no immune system)
Hematocrit: 24.3 (For comparison, a hematocrit of under 28 merits a transfusion)
Hemoglobin: 8.5 (I'm even more anemic, but we all knew that)
So, my local oncologist is concerned that I might get a fever. Stanford expects the WBC to be so low, but does not want the RBC to be this low. Accordingly, I have a transfusion scheduled for Monday -- how exciting! Let's hope they can use the damn catheter this time!
Speaking of catheter: it sucks. They must have botched the placement or something, because it is absolutely impossible for me to sleep on my side. It gets to be quite painful. So, naturally, I get no sleep. I try to sleep on my back, but then at some part of the night I turn to me side, and later wake up in pain.
This has to be fixed.
Today was somewhat embarrassing. Liz, Barbara, Gloria, and I were planning on attending a symphony. One of the pieces was Rachmaninoff's "Rhapsody on a Theme by Paganini," which is a total selling point for me. So I *had* to go. The downside: I had to wear my HEPA/Vader mask.
Naturally, I was the only one wearing such a thing. So I was really standing out. At first, I panicked about what they thought about me: that I was infected with avian flu or something. But then, I got used to it. It wasn't all that bad, plus Liz was quite comforting.
There was only one comment about it. The guy next to me asked rather bluntly, "So, why the mask? Are you contagious or something?" I told him I wasn't, then he went into a lecture about how masks are necessary for the people in Taiwan or something. Apparently, smog is the least of their concerns.
Of course, during the symphony, my phone was off. During this time, I was getting calls from my local oncologist and Stanford. When I got home, I checked my messages: They got my labs and my blood counts were quite low:
White Blood Count: 0.2 (Basically, I have no immune system)
Hematocrit: 24.3 (For comparison, a hematocrit of under 28 merits a transfusion)
Hemoglobin: 8.5 (I'm even more anemic, but we all knew that)
So, my local oncologist is concerned that I might get a fever. Stanford expects the WBC to be so low, but does not want the RBC to be this low. Accordingly, I have a transfusion scheduled for Monday -- how exciting! Let's hope they can use the damn catheter this time!
Speaking of catheter: it sucks. They must have botched the placement or something, because it is absolutely impossible for me to sleep on my side. It gets to be quite painful. So, naturally, I get no sleep. I try to sleep on my back, but then at some part of the night I turn to me side, and later wake up in pain.
This has to be fixed.
Saturday, September 27, 2008
[9-27-08] Feeling Better
[10:19am]
Woot! I'm feeling much better! Well, at least in two truly annoying aspects. First, I don't seem to have any nausea anymore. Second, my stomach seems to be conceding... in that I am being allowed to store things there.
I know it's a gross subject, but I had to clarify this to Barbara on several occasions, so I thought I'd mention it here. Nausea can lead to vomoting, but vomiting does not necessarily need to be preceded by nausea. It can just happen. Spontaneously the stomach could reject something, and, well, there ya go.
Anyhow, while my stomach isn't "steel" at the moment, it is at least stable. Which is quite nice.
Still, I *am* ridiculously anemic at the moment... laughably so. Walking across the boat leaves my panting. I wonder what my hemoglobin is... I want my score recorded. :P
Woot! I'm feeling much better! Well, at least in two truly annoying aspects. First, I don't seem to have any nausea anymore. Second, my stomach seems to be conceding... in that I am being allowed to store things there.
I know it's a gross subject, but I had to clarify this to Barbara on several occasions, so I thought I'd mention it here. Nausea can lead to vomoting, but vomiting does not necessarily need to be preceded by nausea. It can just happen. Spontaneously the stomach could reject something, and, well, there ya go.
Anyhow, while my stomach isn't "steel" at the moment, it is at least stable. Which is quite nice.
Still, I *am* ridiculously anemic at the moment... laughably so. Walking across the boat leaves my panting. I wonder what my hemoglobin is... I want my score recorded. :P
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.
Wednesday, September 24, 2008
[9-24-08] A Day in the Life
[12:32pm]
Yesterday, my hemoglobin was at 9.4. Today, who knows? One thing I do know is that I am totally tired and winded. I would boycott moving if I could.
Yesterday, when I got home, I slept, read a little, slept some more, and here I am. Sleep is good.
You know, they say anemia can effect concentration? That could explain a lot. Wait, what was I saying?
Anyhow, I got up this morning with a really weird feeling in my stomach. It was like I needed to eat something, but more dire and weirder feeling. After eating something, and taking my pills, it took an enormous amount of effort to keep everything down. I remember moving very slowly toward my ativan...
I guess I'm a bit more sensitive than I once was... and I'll definitely have to take my pills one at a time in the future.
Then I began my Neupogen injections. It is a very strange feeling to stab oneself. I think it is instinctual...
Well, it seems clear that Cytoxan has kicked my ass the most so far. Beats ICE and Stanford V. Perhaps a taste of what is to come? Now to go back to sleep.
[2:13pm]
After blissful slumber, I awoke with my stomach in knots. This is definitely hunger, but what to eat? I look across the kitchen cabinets and the more I think about food, the more my stomach shifts to nausea. Ok, food later, get a few anti-nausea pills in. The thought of pills makes it worse. My strategy: let an Ativan dissolve in the mouth, then take the other two anti-emetics.
After settling down for a few minutes, I allow my mind to reconsider the possibility of food. Nope... nothing seems to work. Except... my long-time food savior: the bagel. So, I toasted up a bagel with cream cheese and my stomach stopped acting up. I'm going to *live* off these suckers for a while!
Now that my stomach is a little happier, I can work on that 3 liters of water I need to drink today.
Yesterday, my hemoglobin was at 9.4. Today, who knows? One thing I do know is that I am totally tired and winded. I would boycott moving if I could.
Yesterday, when I got home, I slept, read a little, slept some more, and here I am. Sleep is good.
You know, they say anemia can effect concentration? That could explain a lot. Wait, what was I saying?
Anyhow, I got up this morning with a really weird feeling in my stomach. It was like I needed to eat something, but more dire and weirder feeling. After eating something, and taking my pills, it took an enormous amount of effort to keep everything down. I remember moving very slowly toward my ativan...
I guess I'm a bit more sensitive than I once was... and I'll definitely have to take my pills one at a time in the future.
Then I began my Neupogen injections. It is a very strange feeling to stab oneself. I think it is instinctual...
Well, it seems clear that Cytoxan has kicked my ass the most so far. Beats ICE and Stanford V. Perhaps a taste of what is to come? Now to go back to sleep.
[2:13pm]
After blissful slumber, I awoke with my stomach in knots. This is definitely hunger, but what to eat? I look across the kitchen cabinets and the more I think about food, the more my stomach shifts to nausea. Ok, food later, get a few anti-nausea pills in. The thought of pills makes it worse. My strategy: let an Ativan dissolve in the mouth, then take the other two anti-emetics.
After settling down for a few minutes, I allow my mind to reconsider the possibility of food. Nope... nothing seems to work. Except... my long-time food savior: the bagel. So, I toasted up a bagel with cream cheese and my stomach stopped acting up. I'm going to *live* off these suckers for a while!
Now that my stomach is a little happier, I can work on that 3 liters of water I need to drink today.
Friday, September 19, 2008
[9-19-08] Night Cough = Delayed Chemo?
[10:53pm]
This morning, my Stanford nurse called with a warning: Monday's Cytoxan could be delayed further if I continued to have an irregular chest x-ray.
With a night cough that has lasted for over a week despite antibiotics, I am growing increasingly concerned that there might actually be a troubling new diagnosis ahead. Even if there isn't, it doesn't seem to be going away, and I don't like the possibility of delaying chemo further. I understand the implications of reducing chemo-intensity and I don't like it.
Fighting cancer is such a stressful occupation. Sometimes I wish I didn't have to call nurses, schedule appointments, wait for return calls, and panic about impending test results. It would be nice to just chill. Or maybe work full-time -- a forced distraction would be nice... video games and the internet can only encompass so much time... responsibility creeps in.
Anyhow, I'm still isolated on the boat. It's going to be a big project getting this place prepared for post-cytoxan. Still, I can't delay the chemo even further due to illness -- that'd be devastating. Liz has a fever this weekend, so I can't see her either. I'm really bummed about that -- I was really looking forward to seeing her. Damn cancer.
Bah.
As for the catheter, it is really creepy injecting Heparin into a tube leading directly into your heart. Really freaky. You don't want any air bubbles! And don't forget to clamp the tube shut! The prospect of me forgetting something like that...
Well, at least I'm getting used to it.
This morning, my Stanford nurse called with a warning: Monday's Cytoxan could be delayed further if I continued to have an irregular chest x-ray.
With a night cough that has lasted for over a week despite antibiotics, I am growing increasingly concerned that there might actually be a troubling new diagnosis ahead. Even if there isn't, it doesn't seem to be going away, and I don't like the possibility of delaying chemo further. I understand the implications of reducing chemo-intensity and I don't like it.
Fighting cancer is such a stressful occupation. Sometimes I wish I didn't have to call nurses, schedule appointments, wait for return calls, and panic about impending test results. It would be nice to just chill. Or maybe work full-time -- a forced distraction would be nice... video games and the internet can only encompass so much time... responsibility creeps in.
Anyhow, I'm still isolated on the boat. It's going to be a big project getting this place prepared for post-cytoxan. Still, I can't delay the chemo even further due to illness -- that'd be devastating. Liz has a fever this weekend, so I can't see her either. I'm really bummed about that -- I was really looking forward to seeing her. Damn cancer.
Bah.
As for the catheter, it is really creepy injecting Heparin into a tube leading directly into your heart. Really freaky. You don't want any air bubbles! And don't forget to clamp the tube shut! The prospect of me forgetting something like that...
Well, at least I'm getting used to it.
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