[10:37pm]
Today was my appointment... it was exhausting. I left my house at 10:30am and returned at 7:30pm for a 20 minute appointment with my doctor. Transit time was 2.5 hours (one way), labwork had an hour wait, and the clinic appointment had an 80 minute wait. A whole day wasted; I'm so tired of this stuff. It will be much better once I have my own transportation, of course.
Then I have two more appointments scheduled two weeks from now. So I have freedom for 12 of the next 14 days... the price paid for two 20 minute appointments. Bah. But enough complaining...
I did get to learn a few things. Top on my list was the bone marrow biopsy. Apparently, the biopsy is to determine whether I had any chromosome damage/toxicity due to the high dose chemo. This sort of damage could be classified as pre-cancerous. So, unfortunately, it looks like it is justified. My doctor plans for two more biopsies (coupled with pet-CT scans): one about a month from now, and another in 4 months. Fortunately, it doesn't look like the bone marrow biopsies will be a part of the routine in the years to come.
I then asked about transferring my care to my local oncologist. I explained how routine transportation to and from Stanford would make school in Berkeley quite difficult. My doctor ignored the initial question and instead explained how she felt that it was too early (by about 3 months) to return to school. I then firmly explained that "for the sake of my happiness, I need to return to school... soon." Surprisingly, she just nodded and then made sure I was taking a reduced courseload. As for transferring my care locally, she said that should begin at our next appointment, two weeks from now.
She also scheduled another CT scan before my next appointment. It has nothing to do with cancer -- there was a subtle "Nodular Grand-Glass Opacity" seen on my last CT scan taken while I was hospitalized. It usually indicates a fungal lung infection of some kind, that I obtained due to my severely impaired immune system. From what I gather, it is typically of little concern at this stage, and it usually fixes itself when confronted with a stronger immune system... it is only a problem when it gets out of hand. But, as my scans indicate, it is very subtle.
I then asked: "In your opinion, is the cancer gone?" Her response was something like, "Right now, yes, I believe it is." I didn't like that response... something in the way she said "right now" seemed to stress the possibility of a relapse. Or perhaps she was just trying indicate that further intervention, such as radiation, would be necessary. Or maybe, by "right now", she meant "with the information I currently possess, I believe..." She could be trying to indicate that the results from the bone marrow biopsy or pet-CT scan would change her opinion. Regardless... that is what I am left with.
We also talked briefly about the mask: I am now officially allowed to take it off in most situations. I only have to wear it around sick people, dusty outside areas, or in hospitals.
Also, radiation was briefly mentioned. It does look like that it will be able to be handled by my local radiation oncologist. Woo-hoo! She said we will talk about it further at my next appointment.
Lastly, I asked about plane travel to Michigan. I had an invitation to visit Liz's family and wanted to see what my doctor thought. When I told her the date, she adamantly opposed the idea. "Maybe if it were two months later than it is," she said. Oh well. Heh... the thought of wearing that huge scary mask on the plane... they'd probably think I was a terrorist with a gas bomb or something.
That's it for the appointment!
On my way home, I was actually feeling quite down. I'm not exactly sure why... maybe it was from something my doctor said, or from exhaustion from the day of traveling, or perhaps from cancer stealing yet another day of my life. Accordingly, I stopped by 7-11 to buy my ultimate comfort food: nachos.
I've bought these particular nachos countless times in the past, and today... they didn't taste very good. Just another brick in the wall.
I'm just so tired of all this stuff. At first it seemed like I had a limitless capacity to battle cancer -- an infinite endurance. I think perhaps I have less than I thought. Those cancer warriors out there... the people that fight this stuff for years and years... how do they do it?
Maybe it's just post BMT stress/anxiety/depression/trauma whatever. It's probably temporary. But it feels like something has taken it's toll.
Barbara mentioned that she didn't agree with my "head in the sand" strategy. Of course! It's a totally stupid proposition! It's not a strategy at all! But, you know, those few moments in the sand are quite peaceful...
Showing posts with label pain. Show all posts
Showing posts with label pain. Show all posts
Monday, December 1, 2008
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.
Sunday, November 9, 2008
[11-09-08] Fentanyl Conspiracy (Day +6)
[8:37am]
It's no surprise that I have a severe aversion to pain. I've ranted on the subject on several occasions and even have a dedicated tag to link all "pain" postings. Whether it be a bone marrow biopsy or neupogen-associated pain... I hate the pain, and will write about it.
So, you didn't actually think that was the final word on Fentanyl/mouth pain, did ya? Well, the mouth pain is only getting worse, and the Fentanyl and it's requirements are getting quite absurd.
For example:
They hook you up to a pulse/SPO2 (Respiration Oxygen?) monitor as a requirement for anyone on PCA (Patient Controlled Analgesics). This is annoying for all the standard reasons:
1:If you want to go to the bathroom or anything, you have to turn the machine off, then unplug your probe lead (which is tricky in the dark). Multiply this act for every time you need to go to the bathroom/brush teeth/use sink/relocate... and you'll find that you spend quite a lot of time doing this.
2:You have to wear the darn probe indefinitely -- removal destroys the probe. So, one of your left fingers will be made useless -- and especially now, I need *all* my fingers (tricky catheter de-occlusion maneuvers, applying lotion, typing).
But these are just problems of convenience -- the real difficulty lies in the SP (Saturation Percentage) reading for your Oxygen (O2) levels. If, for any reason, the machine thinks that this level is lower than 87, it beeps LOUDLY! This makes sense, as large doses of Fentanyl can cause a decrease in respiration. However, there are a couple of problems with the SP02 reading:
1: A wet or sweaty probe causes drastic reductions in the measured SP02 level (Alarm goes off). This means that you cannot wash your left hand...ever? Ok, so you've figured out how to wash everything *but* the finger with a clever use of a ziploc bag or something... but then, how does one take a shower without it getting wet? Then there's the sweats -- maybe my fingers sweat while in a plastic probe?
2: A loose probe connection ALWAYS causes a reduction in SP02. Remember how one has to wear the probe non-stop 24/7? Well, if any one of a million actions during that time causes the little red light to become misaligned... be prepared for many alarms.
3: Sleeping on one's side causes a reduction in SP02 (for some reason) -- in order to get any sleep during the night, be prepared to learn how to sleep on your back.
4: Random machine weirdness. You could be sitting up, typing away on your computer, no Fentanyl delivered for an hour... and the SP02 alarm goes off. Or it says your pulse is 230 and people come rushing in.
So, where's the conspiracy theory? Well, it's not actually a conspiracy -- I don't think there's a consortium of nurses plotting to prove that the amount of pain I experience does not justify the amount of Fentanyl I use.
I do, however, seem to experience a lack of concern about forced sleeping positions, noisy machines, or the accuracy of the current SP02 reading. The answer to all these problems seems to be the implied: "Well, just take less Fentanyl and you'll be fine."
In honestly think there are nurses here who believe I am taking more Fentanyl than I need, and am currently over-medicated on it. Nevermind the fact that I wake up at 7 and approach the day bright-eyed and bushy tailed... I even skip my afternoon nap so that I can get better sleep at night. The nap, being tired... these things are perfectly normal for a cancer patient undergoing BMT, but nevertheless, I feel like I need to demonstrate my clarity of thought. I also don't have dizzy spells or other things associated with too much Fentanyl.
Still, there have been times where the pain was great and I repeatedly took extra Fentanyl... I'm sure I was a bit drowsy then... but nothing dangerous!
-----------------------------
Enough of my rant. I just finished typing it when my two doctors showed up...
Doctor: "So how has your pain management been doing?"
Me: "Not so well -- I haven't been clicking the relief button because this darn machine gives inaccurate readings, and taking extra Fentanyl doesn't help things. For example, I can't click at all if I want to sleep on my side -- I need to get to sleep. So I usually just work through the pain; plus, I feel that some of the nurses don't want me clicking... maybe because my dose is too high, or that it's dangerous or something."
(Both Doctors) "No, no, no, no, no."
(First Doctor) "Take the Fentanyl -- that's what it's there for. The nurses should be checking the machine's accuracy routinely... there's this bar that goes up and down with your pulse... [forget details] Plus, there's always a doctor on call -- tell the nurses to contact the doctor if they have an issue with your SPO2. I'll be on call tonight if anything comes up.
Me: "Ok, thanks. So, just to be sure, it's OK if I click repeatedly if I have pain?"
Doctor: "If you have pain; take the Fentanyl."
Then they went on to discuss other parts of my health.
So... GREAT! I feel so liberated! This has been a huge weight on my shoulders: pain on one side/upsetting nurses on the other (though I'm sure with some nurses it's all in my head; some are more explicit though).
As originally planned, I'm going to click when I feel pain! It's so simple! *duh* Stupid Austin: Don't let others push you around.
On another note, Barbara mentioned how I haven't been posting my counts -- I'll try to start doing that. She seemed pleased that my WBC went from 0.1 to 0.6 (on Friday)... well, my WBC taken yesterday was 0.1.
I'm told that I'm not recovering yet; that it's still a good 5-9 days or so before I start to recover.
It's no surprise that I have a severe aversion to pain. I've ranted on the subject on several occasions and even have a dedicated tag to link all "pain" postings. Whether it be a bone marrow biopsy or neupogen-associated pain... I hate the pain, and will write about it.
So, you didn't actually think that was the final word on Fentanyl/mouth pain, did ya? Well, the mouth pain is only getting worse, and the Fentanyl and it's requirements are getting quite absurd.
For example:
They hook you up to a pulse/SPO2 (Respiration Oxygen?) monitor as a requirement for anyone on PCA (Patient Controlled Analgesics). This is annoying for all the standard reasons:
1:If you want to go to the bathroom or anything, you have to turn the machine off, then unplug your probe lead (which is tricky in the dark). Multiply this act for every time you need to go to the bathroom/brush teeth/use sink/relocate... and you'll find that you spend quite a lot of time doing this.
2:You have to wear the darn probe indefinitely -- removal destroys the probe. So, one of your left fingers will be made useless -- and especially now, I need *all* my fingers (tricky catheter de-occlusion maneuvers, applying lotion, typing).
But these are just problems of convenience -- the real difficulty lies in the SP (Saturation Percentage) reading for your Oxygen (O2) levels. If, for any reason, the machine thinks that this level is lower than 87, it beeps LOUDLY! This makes sense, as large doses of Fentanyl can cause a decrease in respiration. However, there are a couple of problems with the SP02 reading:
1: A wet or sweaty probe causes drastic reductions in the measured SP02 level (Alarm goes off). This means that you cannot wash your left hand...ever? Ok, so you've figured out how to wash everything *but* the finger with a clever use of a ziploc bag or something... but then, how does one take a shower without it getting wet? Then there's the sweats -- maybe my fingers sweat while in a plastic probe?
2: A loose probe connection ALWAYS causes a reduction in SP02. Remember how one has to wear the probe non-stop 24/7? Well, if any one of a million actions during that time causes the little red light to become misaligned... be prepared for many alarms.
3: Sleeping on one's side causes a reduction in SP02 (for some reason) -- in order to get any sleep during the night, be prepared to learn how to sleep on your back.
4: Random machine weirdness. You could be sitting up, typing away on your computer, no Fentanyl delivered for an hour... and the SP02 alarm goes off. Or it says your pulse is 230 and people come rushing in.
So, where's the conspiracy theory? Well, it's not actually a conspiracy -- I don't think there's a consortium of nurses plotting to prove that the amount of pain I experience does not justify the amount of Fentanyl I use.
I do, however, seem to experience a lack of concern about forced sleeping positions, noisy machines, or the accuracy of the current SP02 reading. The answer to all these problems seems to be the implied: "Well, just take less Fentanyl and you'll be fine."
In honestly think there are nurses here who believe I am taking more Fentanyl than I need, and am currently over-medicated on it. Nevermind the fact that I wake up at 7 and approach the day bright-eyed and bushy tailed... I even skip my afternoon nap so that I can get better sleep at night. The nap, being tired... these things are perfectly normal for a cancer patient undergoing BMT, but nevertheless, I feel like I need to demonstrate my clarity of thought. I also don't have dizzy spells or other things associated with too much Fentanyl.
Still, there have been times where the pain was great and I repeatedly took extra Fentanyl... I'm sure I was a bit drowsy then... but nothing dangerous!
-----------------------------
Enough of my rant. I just finished typing it when my two doctors showed up...
Doctor: "So how has your pain management been doing?"
Me: "Not so well -- I haven't been clicking the relief button because this darn machine gives inaccurate readings, and taking extra Fentanyl doesn't help things. For example, I can't click at all if I want to sleep on my side -- I need to get to sleep. So I usually just work through the pain; plus, I feel that some of the nurses don't want me clicking... maybe because my dose is too high, or that it's dangerous or something."
(Both Doctors) "No, no, no, no, no."
(First Doctor) "Take the Fentanyl -- that's what it's there for. The nurses should be checking the machine's accuracy routinely... there's this bar that goes up and down with your pulse... [forget details] Plus, there's always a doctor on call -- tell the nurses to contact the doctor if they have an issue with your SPO2. I'll be on call tonight if anything comes up.
Me: "Ok, thanks. So, just to be sure, it's OK if I click repeatedly if I have pain?"
Doctor: "If you have pain; take the Fentanyl."
Then they went on to discuss other parts of my health.
So... GREAT! I feel so liberated! This has been a huge weight on my shoulders: pain on one side/upsetting nurses on the other (though I'm sure with some nurses it's all in my head; some are more explicit though).
As originally planned, I'm going to click when I feel pain! It's so simple! *duh* Stupid Austin: Don't let others push you around.
On another note, Barbara mentioned how I haven't been posting my counts -- I'll try to start doing that. She seemed pleased that my WBC went from 0.1 to 0.6 (on Friday)... well, my WBC taken yesterday was 0.1.
I'm told that I'm not recovering yet; that it's still a good 5-9 days or so before I start to recover.
Saturday, November 8, 2008
[11-08-08] Long Night + Fentanyl (Day +5)
[8:48am]
Last night was a looooong night. Not a hard night; a long night.
We had several objectives:
1: IVIG (Norwalk Treatment) - Represents about 4 hours of the nurse coming in and out.
2: Bag of Platelets (Due to some rectal bleeding I discovered on Fri.) - Represents about an hour of nurse coming in and out of room.
3: Two units of blood transfused (Hematocrit is at 26 -- bah, I could go way lower, but I guess it's better to be safe than sorry). Plus, those bags are liquid energy -- like the stimpacks from video games - "Let's get some!" Two bags represents 6 to 8 hours of the nurse coming in and out of the room.
4: All the usual stuff -- Antibiotics, hydration, etc...
Calculate the fact that the PICC line has only two lumens, and you have a long evening indeed -- We just finished a couple of ours ago.
So where does Fentanyl come into play? Where doesn't it! Well, I would fall asleep, the nurse would wake me up and ask me my current pain -- I'd usually say something like 4 or 5 (because the psin is usually high upon awakening). Then, I'd click the Fentanyl clicker. This would, in turn, lower my respiration and make me feel a heckova lot better.
But the respiration going lower wasn't a good thing if I was to be going to sleep -- ya gotta keep breathing in those dreams of yours!
Accordingly, they put be on oxygen durning the night.
Despite the respiration, I was in pain, so I continued to click away. Maybe I'm worse at night because there is no mental acuity/pain tradeoff when I am asleep...
Anyhow, I got a little Fentanyl lecture. Not a stern one, just a "Hey, don't be reckless with this stuff -- it's dangerous" lecture. In a way, it was quite disappointing, because I like this nurse and I most certainly do not use Fentanyl recreationally - I may joke about it, but it is really all about pain relief.
I recall a nurse answering a question from my mom on the suject of chemical dependency... The nurse replied, "As long you as take the drug as prescribed: to relieve pain, anxiety, or whatever it is indicated for. there is zero percent chance of addiction.
You may be able to tell my writing is being influenced by Fentanyl at present, but should that prevent me from taking more if I am in pain?
No Way!
P.S. - I finished assembling my metal praying mantis that Barbara got for me -- it's awesome!
[9:54am]
I just had to be instructed in general ass care and proper application of lotions. This is because of the previously mentioned problem in the rear. *sigh* How embarassing.
Last night was a looooong night. Not a hard night; a long night.
We had several objectives:
1: IVIG (Norwalk Treatment) - Represents about 4 hours of the nurse coming in and out.
2: Bag of Platelets (Due to some rectal bleeding I discovered on Fri.) - Represents about an hour of nurse coming in and out of room.
3: Two units of blood transfused (Hematocrit is at 26 -- bah, I could go way lower, but I guess it's better to be safe than sorry). Plus, those bags are liquid energy -- like the stimpacks from video games - "Let's get some!" Two bags represents 6 to 8 hours of the nurse coming in and out of the room.
4: All the usual stuff -- Antibiotics, hydration, etc...
Calculate the fact that the PICC line has only two lumens, and you have a long evening indeed -- We just finished a couple of ours ago.
So where does Fentanyl come into play? Where doesn't it! Well, I would fall asleep, the nurse would wake me up and ask me my current pain -- I'd usually say something like 4 or 5 (because the psin is usually high upon awakening). Then, I'd click the Fentanyl clicker. This would, in turn, lower my respiration and make me feel a heckova lot better.
But the respiration going lower wasn't a good thing if I was to be going to sleep -- ya gotta keep breathing in those dreams of yours!
Accordingly, they put be on oxygen durning the night.
Despite the respiration, I was in pain, so I continued to click away. Maybe I'm worse at night because there is no mental acuity/pain tradeoff when I am asleep...
Anyhow, I got a little Fentanyl lecture. Not a stern one, just a "Hey, don't be reckless with this stuff -- it's dangerous" lecture. In a way, it was quite disappointing, because I like this nurse and I most certainly do not use Fentanyl recreationally - I may joke about it, but it is really all about pain relief.
I recall a nurse answering a question from my mom on the suject of chemical dependency... The nurse replied, "As long you as take the drug as prescribed: to relieve pain, anxiety, or whatever it is indicated for. there is zero percent chance of addiction.
You may be able to tell my writing is being influenced by Fentanyl at present, but should that prevent me from taking more if I am in pain?
No Way!
P.S. - I finished assembling my metal praying mantis that Barbara got for me -- it's awesome!
[9:54am]
I just had to be instructed in general ass care and proper application of lotions. This is because of the previously mentioned problem in the rear. *sigh* How embarassing.
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.
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.
Thursday, October 9, 2008
[10-09-08] The Austin Pain Scale
[10:40pm]
I've been spending the day cataloging my video game collection. What is the average rating? What is the genre? Is it multiplayer? I am preparing. Like a squirrel gathering acorns, I am saving my games for the winter ahead of me.
Then, I think back to how Barbara said how I liked to "quantify the subjective." It's true; I do. In fact, I've been doing it since I was like 5 or so. I've always annoyed people by incessantly asking for a "favorite," "which would win", or a "top five." Kinda like that guy on High-Fidelity.
Maybe I'll post a few of my neurotic lists, sometime. :P
Anyhow, back to the conversation with Barbara... We began discussing this after a nurse looked at me skeptically when I described my status on the pain scale (due to Neupogen back pain). Yes, the pain scale, again.
I obsess, I know. But it's such a perfect example: level of pain seems like such a subjective experience! There's no pain indicators attached to our heads or pain meters that we can attach to our brain stem. In addition, the nurses and doctors place such importance on the number that you give them. Naturally, I can't resist the challenge to quantify this.
Back to the nurse. So I told her that I had a pain rating of 5 and she looked at me like I just picked my nose. How *dare* she question my objectivity! I then commented to Barbara, "If only she realized how much thought I put into accurately providing my pain rating."
I then thought about actually writing it out. So, here it is:
The pain scale is on an integer scale of 0-10, with nothing more than faces to assist in the self assessment.
Although there are many different scales, this is the one I see the most in California hospitals. So, here's the criteria I use:
Pain 0: No Pain.
Pain 1: Detectable Pain. However, it is not sufficient enough to do anything about it. It is neither annoying or distracting. If a Tylenol and a glass of water was 2 feet away, you wouldn't take it.
Pain 2: Annoying Pain. You would take the Tylenol, but would have no problem watching TV or browsing the web. Not sufficient to distract you from your at-rest activities.
Pain 3: Distracting Pain. You would really like some medication at this point. If the Tylenol isn't near, this is where you'd start digging through your bathroom cabinet. Why not? You can't really enjoy watching TV, and reading a book is out of the question... This pain needs to be solved. Sleep would be possible at this level, but difficult.
Pain 4: Sleepless Pain. Medication is needed. Over-the-counter medications may dull the pain a little, but they wouldn't really help -- Vicodin would be nice. Sleep is very, very difficult at this level. Imagine not falling to sleep for at least three hours, then waking up every 30 minutes due to pain. At this level, I'd say getting 2.5 hours total of scattered sleep in a period of 8 hours is likely. (The pain scale, to me is a bit like the Richter scale: moving from 2 to 3 is a bigger step than moving from 1 to 2, and so on.)
Pain 5: Fidgety Pain. Narcotic medication is mandatory. If a doctor recommends Tylenol, then you should request a new doctor. If you are at home, without narcotic pain meds, then you'd probably start pondering the pain relief given by getting incredibly drunk or repeatedly banging your head against the wall. We're not in ER territory, but the pain is severe enough to cause you to constantly reposition yourself in an effort to reduce the pain -- fidgeting. Sleep is downright impossible.
Pain 6: Frantic Pain. Narcotics would help; Morphine would probably be best. If I were at home, then I'd consider going to the ER. It is a bit difficult to speak properly, due to abrupt spikes/stabs/pulses in the pain. You cannot stay still; you need relief.
Pain 7: Physiological Pain 1. Morphine is mandatory; go to ER at this level. This is where the pain is painfully obvious to doctors on a physiological level. Breathing and speaking become erratic, due to abrupt spikes/stabs/pulses in the pain. Envision grunting. Your pulse is way up.
Pain 8: Physiological Pain 2. Morphine may help slightly; something stronger may be best. All the previous physiological symptoms, but more so. Visibly trembling/shaking.
Pain 9: Physiological Pain 3. Something stronger than morphine is mandatory. All the previous physiological symptoms, but more so.
Pain 10: Fantasy Pain. The most pain you've ever experienced, or could fathom experiencing.
Ah, I love to quantify.
I've been spending the day cataloging my video game collection. What is the average rating? What is the genre? Is it multiplayer? I am preparing. Like a squirrel gathering acorns, I am saving my games for the winter ahead of me.
Then, I think back to how Barbara said how I liked to "quantify the subjective." It's true; I do. In fact, I've been doing it since I was like 5 or so. I've always annoyed people by incessantly asking for a "favorite," "which would win", or a "top five." Kinda like that guy on High-Fidelity.
Maybe I'll post a few of my neurotic lists, sometime. :P
Anyhow, back to the conversation with Barbara... We began discussing this after a nurse looked at me skeptically when I described my status on the pain scale (due to Neupogen back pain). Yes, the pain scale, again.
I obsess, I know. But it's such a perfect example: level of pain seems like such a subjective experience! There's no pain indicators attached to our heads or pain meters that we can attach to our brain stem. In addition, the nurses and doctors place such importance on the number that you give them. Naturally, I can't resist the challenge to quantify this.
Back to the nurse. So I told her that I had a pain rating of 5 and she looked at me like I just picked my nose. How *dare* she question my objectivity! I then commented to Barbara, "If only she realized how much thought I put into accurately providing my pain rating."
I then thought about actually writing it out. So, here it is:
The pain scale is on an integer scale of 0-10, with nothing more than faces to assist in the self assessment.
Although there are many different scales, this is the one I see the most in California hospitals. So, here's the criteria I use:
Pain 0: No Pain.
Pain 1: Detectable Pain. However, it is not sufficient enough to do anything about it. It is neither annoying or distracting. If a Tylenol and a glass of water was 2 feet away, you wouldn't take it.
Pain 2: Annoying Pain. You would take the Tylenol, but would have no problem watching TV or browsing the web. Not sufficient to distract you from your at-rest activities.
Pain 3: Distracting Pain. You would really like some medication at this point. If the Tylenol isn't near, this is where you'd start digging through your bathroom cabinet. Why not? You can't really enjoy watching TV, and reading a book is out of the question... This pain needs to be solved. Sleep would be possible at this level, but difficult.
Pain 4: Sleepless Pain. Medication is needed. Over-the-counter medications may dull the pain a little, but they wouldn't really help -- Vicodin would be nice. Sleep is very, very difficult at this level. Imagine not falling to sleep for at least three hours, then waking up every 30 minutes due to pain. At this level, I'd say getting 2.5 hours total of scattered sleep in a period of 8 hours is likely. (The pain scale, to me is a bit like the Richter scale: moving from 2 to 3 is a bigger step than moving from 1 to 2, and so on.)
Pain 5: Fidgety Pain. Narcotic medication is mandatory. If a doctor recommends Tylenol, then you should request a new doctor. If you are at home, without narcotic pain meds, then you'd probably start pondering the pain relief given by getting incredibly drunk or repeatedly banging your head against the wall. We're not in ER territory, but the pain is severe enough to cause you to constantly reposition yourself in an effort to reduce the pain -- fidgeting. Sleep is downright impossible.
Pain 6: Frantic Pain. Narcotics would help; Morphine would probably be best. If I were at home, then I'd consider going to the ER. It is a bit difficult to speak properly, due to abrupt spikes/stabs/pulses in the pain. You cannot stay still; you need relief.
Pain 7: Physiological Pain 1. Morphine is mandatory; go to ER at this level. This is where the pain is painfully obvious to doctors on a physiological level. Breathing and speaking become erratic, due to abrupt spikes/stabs/pulses in the pain. Envision grunting. Your pulse is way up.
Pain 8: Physiological Pain 2. Morphine may help slightly; something stronger may be best. All the previous physiological symptoms, but more so. Visibly trembling/shaking.
Pain 9: Physiological Pain 3. Something stronger than morphine is mandatory. All the previous physiological symptoms, but more so.
Pain 10: Fantasy Pain. The most pain you've ever experienced, or could fathom experiencing.
Ah, I love to quantify.
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.
Thursday, September 18, 2008
[9-18-08] Hickman Catheter Placement #2
[11:29am]
It was quite a different experience to have a procedure done in a teaching hospital. Still, it wasn't like what you'd expect to see in an episode of "Scrubs" or "House." There weren't a bunch of bumbling interns, and residents too busy dating one another to worry about the patients. It was actually quite serious there.
However, that doesn't mean that everything went perfectly. My nurse had trouble putting the IV into my right hand, so she asked for help. It was quite disconcerting to have another nurse demonstrate the proper method while I sit there quietly. At one point, it went something like this: "Feel this vein? Like this. Still don't? Ok, try this. Here, feel right here. No? Ok, well you can at least see it, right?" Quite disconcerting.
Then there is the surgery itself. After having myriad medical procedures performed on myself, I believe that I am somewhat capable of evaluating them. Let me say this: Stanford may be the world's best place to be for a lymphoma BMT, but consider getting your catheter placed elsewhere. Okay, that's not a totally fair assessment. First, it looks like the catheter was placed just fine. Second, I can't judge an institution based on a single doctor.
My problem was that the procedure itself was painful. I had to constantly nag the doctor that what he was doing was painful. At first, he was receptive, but eventually I got the impression that he started to find my complaints annoying. Either that, or he believed that there was no possible way I could be feeling any pain with the amount of Fentanyl that he had administered; that I may have been faking pain to get more pain medication or something.
A couple of things he said before the procedure:
1: The only pain you will feel is from the lidocaine injections (local anesthetic).
2: You'll probably forget the whole thing.
Both were terribly wrong... I remember the whole procedure. I really think they didn't expect me to. At one point, I heard the doctor complain that my vein was being "stubborn." At another point, after I had complained, I recall the doctor telling the nurse to give me "the rest of the Versed", and that they "might as well not waste it." I'm not quite sure what this means (I had a blue sheet blocking my vision), but perhaps I am allocated a fixed amount of medication for a procedure? As far as I know, Versed is what makes you forget the procedure -- the Fentanyl is for pain. Anyhow, it's over now. Still, my point is that I remember my other two procedures (one, a port placement) with conscious sedation -- I hardly felt any pain at all. So why the pain this time?
After the procedure, Barbara and I headed to the ENT appointment. She stuck this long tube with a camera attached to it... through my nose and down my throat. I loved how, before the procedure, she commented, "You've been subjected to so much, that this'll be a piece of cake for you." She was right; it was.
Anyhow, she concluded that I was fine. So, good news there.
The bad news is that, due to my cough, everything in my BMT schedule has been delayed a week. I should be enjoying a Cytoxan martini right now, but that's been delayed until Monday... which causes a delay in everything else by a full week. So, no outpatient conditioning chemo until Oct. 21st.
Oh well. I've got a busy schedule! I'm just about to head to an appointment with a local oncologist (so that I can get labs in Santa Cruz). But first, I have to figure out how to work this darn catheter. I want a shower!
It was quite a different experience to have a procedure done in a teaching hospital. Still, it wasn't like what you'd expect to see in an episode of "Scrubs" or "House." There weren't a bunch of bumbling interns, and residents too busy dating one another to worry about the patients. It was actually quite serious there.
However, that doesn't mean that everything went perfectly. My nurse had trouble putting the IV into my right hand, so she asked for help. It was quite disconcerting to have another nurse demonstrate the proper method while I sit there quietly. At one point, it went something like this: "Feel this vein? Like this. Still don't? Ok, try this. Here, feel right here. No? Ok, well you can at least see it, right?" Quite disconcerting.
Then there is the surgery itself. After having myriad medical procedures performed on myself, I believe that I am somewhat capable of evaluating them. Let me say this: Stanford may be the world's best place to be for a lymphoma BMT, but consider getting your catheter placed elsewhere. Okay, that's not a totally fair assessment. First, it looks like the catheter was placed just fine. Second, I can't judge an institution based on a single doctor.
My problem was that the procedure itself was painful. I had to constantly nag the doctor that what he was doing was painful. At first, he was receptive, but eventually I got the impression that he started to find my complaints annoying. Either that, or he believed that there was no possible way I could be feeling any pain with the amount of Fentanyl that he had administered; that I may have been faking pain to get more pain medication or something.
A couple of things he said before the procedure:
1: The only pain you will feel is from the lidocaine injections (local anesthetic).
2: You'll probably forget the whole thing.
Both were terribly wrong... I remember the whole procedure. I really think they didn't expect me to. At one point, I heard the doctor complain that my vein was being "stubborn." At another point, after I had complained, I recall the doctor telling the nurse to give me "the rest of the Versed", and that they "might as well not waste it." I'm not quite sure what this means (I had a blue sheet blocking my vision), but perhaps I am allocated a fixed amount of medication for a procedure? As far as I know, Versed is what makes you forget the procedure -- the Fentanyl is for pain. Anyhow, it's over now. Still, my point is that I remember my other two procedures (one, a port placement) with conscious sedation -- I hardly felt any pain at all. So why the pain this time?
After the procedure, Barbara and I headed to the ENT appointment. She stuck this long tube with a camera attached to it... through my nose and down my throat. I loved how, before the procedure, she commented, "You've been subjected to so much, that this'll be a piece of cake for you." She was right; it was.
Anyhow, she concluded that I was fine. So, good news there.
The bad news is that, due to my cough, everything in my BMT schedule has been delayed a week. I should be enjoying a Cytoxan martini right now, but that's been delayed until Monday... which causes a delay in everything else by a full week. So, no outpatient conditioning chemo until Oct. 21st.
Oh well. I've got a busy schedule! I'm just about to head to an appointment with a local oncologist (so that I can get labs in Santa Cruz). But first, I have to figure out how to work this darn catheter. I want a shower!
Wednesday, September 10, 2008
[9-10-08] ENT
[3:03pm]
I always thought ENT stood for some really long and obscure medical speciality...like Enteroscopinology. I just figured it out: Ear, Nose, and Throat. Duh!
Anyhow, my throat is still driving me crazy. The worst part is the coughing at night. For some reason (i.e. some deity playing a cruel prank on me), whenever I lie down to begin my blissful drift into slumber, I start coughing. It occurs because I lie down to go to sleep -- isn't that vicious?
Another cruelty: my only cure to the coughing is the numbing mouthwash. I have to take two full gulps to start the cough. So what's the problem? That stuff makes me feel sick! It takes effort to hold down the two gulps. So I have the pain/coughing on one side, and nausea on the other. I have to choose the lesser of two evils. Sometimes the treatment is worse than the disease. :P Sometimes not.
Yesterday, I promised to call the nurse if the problem persisted the next day. So I called her today. She studied my symptoms, discussed them with my doctor, and got back to me. The diagnosis: a referral to an ENT doctor is needed. She strongly wishes this to be resolved before I begin BMT chemo.
So, I've been scrambling all day to make an appointment with an ENT doctor. It is very hard to schedule around the BMT schedule... especially if I need a ride from someone to do so. Bah.
I always thought ENT stood for some really long and obscure medical speciality...like Enteroscopinology. I just figured it out: Ear, Nose, and Throat. Duh!
Anyhow, my throat is still driving me crazy. The worst part is the coughing at night. For some reason (i.e. some deity playing a cruel prank on me), whenever I lie down to begin my blissful drift into slumber, I start coughing. It occurs because I lie down to go to sleep -- isn't that vicious?
Another cruelty: my only cure to the coughing is the numbing mouthwash. I have to take two full gulps to start the cough. So what's the problem? That stuff makes me feel sick! It takes effort to hold down the two gulps. So I have the pain/coughing on one side, and nausea on the other. I have to choose the lesser of two evils. Sometimes the treatment is worse than the disease. :P Sometimes not.
Yesterday, I promised to call the nurse if the problem persisted the next day. So I called her today. She studied my symptoms, discussed them with my doctor, and got back to me. The diagnosis: a referral to an ENT doctor is needed. She strongly wishes this to be resolved before I begin BMT chemo.
So, I've been scrambling all day to make an appointment with an ENT doctor. It is very hard to schedule around the BMT schedule... especially if I need a ride from someone to do so. Bah.
Thursday, August 14, 2008
[8-14-08] ICE, Day One
[2:54am]
This bed is inferior to the one I had previously. With all beds, there is a finite amount of time that it can function before some type of back pain is present. The last one was a miraculous 11.5 hours or so! As it so happens, I have just finished my objective evaluation of this current bed. My conclusion? A standard 7-hours.
Fortunately, I have just been fed some Vicodin in an effort to add more "fluff" to my mattress. We shall see. Cardboard plus Vicodin does not a Tempurpedic make. Interesting to note that they decided to allow me "as-needed" access to the good stuff. I guess when I told them about that unfortunate ER visit a few days ago, they thought it might be important to consider possible pain. Glad they did. Previously, I might have eaten a few Tylenol and waited like a good boy. Now, with all other crappiness in-bound, I don't have the luxury or time to be a "good boy." Fix it, I say! :P
Scalp feels a bit strange. So, I just gave myself the good-old hair-pull test. It's started. Onset is more sudden (just noticed it now!) and the amount of hair lost per pinch is FAR greater than last time. This should be interesting! Bets are being taken! Can you guess the hair halflife (Time it takes to lose 50% of current hair)? My current bet is 1.5 weeks.
[8:54am]
Ah, nothing like a fresh shower to start your day properly! It was quite difficult, actually. For example, to wash one's hair while simultaneously holding plastic tubing and maneuvering so that one's port does not get wet...is quite difficult. I got water everywhere. Still, mission complete.
I am so ready for chemo.
By the way, I was thinking about making the title of my previous post a trivia challenge! Basically, some video game quote was swimming in my heard yesterday, and I was wondering if any of the Kentucky gamers I know could guess it. The title refers to a video game quote, specifically for the Nintendo. So what game was it?
[10:15am]
Just started me on the pre-meds: Ativan, Zolfran, and Decadron. Chemo ETA: 20 mins.
Ah man, I'm losing the scruffy little beard hear that I've spent the last two weeks cultivating! Liz was telling me how she liked it, so I've been working on it. I had the impression that the slower growing the hair was, the more resistant it would be to falling out. Accordingly, I visualized myself bald, but with facial hair for a time. Nope, not gonna happen. Bummer. That might've been a "tough" look. All of my hair, with the exception of eyebrows and eyelashes, is being lost at a ridiculous pace. It's cool! I mean, yeah, it sucks and everything. But it's inevitable, and quite an odd experience! In other words: kinda neat. I do find, however, that I have to resist the urge to become a Trichotillomaniac. It can be addictive.
I know there isn't empirical evidence to back this up. But, nevertheless, I find this reassuring. I mean, chemo kills rapidly growing cells, yes? Stanford V did not kill the tumor, and it only killed some of the rapidly-growing hair cells. ICE, on the other hand, is just brutally killing every hair cell in existence. What can I conclude it will do to the tumor, then? Hmmm? :P
[12:23pm]
Not taking a chance with lunch today! I just placed an order for delivery from the local Japanese restaurant -- I feel so decadent!! Mmmmm...
On another note, chemo is pumping as-scheduled. Finally!
[2:20pm]
Just woke up from my food-induced coma. That Japanese food: BEST IDEA EVAH! I'm so happy. They came in with HUGE servings -- I actually couldn't eat in all. Oh well, teryaki for later! While I was eating the nurse came in with the hospital lunch... I felt a bit guilty: "oh, I'll eat your food too!" I ate the pears.
On the chemo-front: I'm getting a bit of what feels like a headache. Meh.
[8:53pm]
So, my first day's been pretty uneventful. No news is usually good news. All chemo was delivered: cisplatin, hydration, mesna, ifosfamide, etoposide, mesna, with no side effects. Except for a weird taste and the mouth and an odd (but perfectly acceptable) "feeling" in the stomach; kinda like "this is not nominal, but ok nonetheless." All in all, well tolerated...
Except, it looks like that headache I described earlier transformed into a fever. Just a few moments ago, I realized that I had that all-too-familiar "burning eyes" sensation that has always been my personal fever indicator. It sounds worse than it is: just a kinda warm, uncomfortable, headachey feeling in the eyes. Anyhow, I'm benchmarked at 100.0F on the dot. But, I'm sure it will go away -- I just had the etoposide, and I have experienced temporary fevers due to the drug before.
This bed is inferior to the one I had previously. With all beds, there is a finite amount of time that it can function before some type of back pain is present. The last one was a miraculous 11.5 hours or so! As it so happens, I have just finished my objective evaluation of this current bed. My conclusion? A standard 7-hours.
Fortunately, I have just been fed some Vicodin in an effort to add more "fluff" to my mattress. We shall see. Cardboard plus Vicodin does not a Tempurpedic make. Interesting to note that they decided to allow me "as-needed" access to the good stuff. I guess when I told them about that unfortunate ER visit a few days ago, they thought it might be important to consider possible pain. Glad they did. Previously, I might have eaten a few Tylenol and waited like a good boy. Now, with all other crappiness in-bound, I don't have the luxury or time to be a "good boy." Fix it, I say! :P
Scalp feels a bit strange. So, I just gave myself the good-old hair-pull test. It's started. Onset is more sudden (just noticed it now!) and the amount of hair lost per pinch is FAR greater than last time. This should be interesting! Bets are being taken! Can you guess the hair halflife (Time it takes to lose 50% of current hair)? My current bet is 1.5 weeks.
[8:54am]
Ah, nothing like a fresh shower to start your day properly! It was quite difficult, actually. For example, to wash one's hair while simultaneously holding plastic tubing and maneuvering so that one's port does not get wet...is quite difficult. I got water everywhere. Still, mission complete.
I am so ready for chemo.
By the way, I was thinking about making the title of my previous post a trivia challenge! Basically, some video game quote was swimming in my heard yesterday, and I was wondering if any of the Kentucky gamers I know could guess it. The title refers to a video game quote, specifically for the Nintendo. So what game was it?
[10:15am]
Just started me on the pre-meds: Ativan, Zolfran, and Decadron. Chemo ETA: 20 mins.
Ah man, I'm losing the scruffy little beard hear that I've spent the last two weeks cultivating! Liz was telling me how she liked it, so I've been working on it. I had the impression that the slower growing the hair was, the more resistant it would be to falling out. Accordingly, I visualized myself bald, but with facial hair for a time. Nope, not gonna happen. Bummer. That might've been a "tough" look. All of my hair, with the exception of eyebrows and eyelashes, is being lost at a ridiculous pace. It's cool! I mean, yeah, it sucks and everything. But it's inevitable, and quite an odd experience! In other words: kinda neat. I do find, however, that I have to resist the urge to become a Trichotillomaniac. It can be addictive.
I know there isn't empirical evidence to back this up. But, nevertheless, I find this reassuring. I mean, chemo kills rapidly growing cells, yes? Stanford V did not kill the tumor, and it only killed some of the rapidly-growing hair cells. ICE, on the other hand, is just brutally killing every hair cell in existence. What can I conclude it will do to the tumor, then? Hmmm? :P
[12:23pm]
Not taking a chance with lunch today! I just placed an order for delivery from the local Japanese restaurant -- I feel so decadent!! Mmmmm...
On another note, chemo is pumping as-scheduled. Finally!
[2:20pm]
Just woke up from my food-induced coma. That Japanese food: BEST IDEA EVAH! I'm so happy. They came in with HUGE servings -- I actually couldn't eat in all. Oh well, teryaki for later! While I was eating the nurse came in with the hospital lunch... I felt a bit guilty: "oh, I'll eat your food too!" I ate the pears.
On the chemo-front: I'm getting a bit of what feels like a headache. Meh.
[8:53pm]
So, my first day's been pretty uneventful. No news is usually good news. All chemo was delivered: cisplatin, hydration, mesna, ifosfamide, etoposide, mesna, with no side effects. Except for a weird taste and the mouth and an odd (but perfectly acceptable) "feeling" in the stomach; kinda like "this is not nominal, but ok nonetheless." All in all, well tolerated...
Except, it looks like that headache I described earlier transformed into a fever. Just a few moments ago, I realized that I had that all-too-familiar "burning eyes" sensation that has always been my personal fever indicator. It sounds worse than it is: just a kinda warm, uncomfortable, headachey feeling in the eyes. Anyhow, I'm benchmarked at 100.0F on the dot. But, I'm sure it will go away -- I just had the etoposide, and I have experienced temporary fevers due to the drug before.
Monday, August 11, 2008
[8-11-08] The Beaten Dog Analogy
[8:36am]
Ah, what a beautiful morning! Everything's a bit more lovely without all that pain. And, believe it or not, I am not currently hopped up on Vicodin. :P I was afraid that the severity of the pain meant that it was something chronic or permanent. But it looks like it was passing. I did have to take like two Vicodin's every four hours until about 5am, when it started to resolve. It was a rough night's sleep.
Not just due to the pain, but also because of the sweating. For some reason, I was sweating a bunch -- mostly in the scalp. I'm talking, "wow, my pillow is wet" type sweating. I hope it's due to the pain medications, and not the traditional Hodge "night sweats."
By the way, I'd like to briefly mention the "Beaten Dog" analogy. It is perhaps one of the most widely applicable metaphors/analogies in existence. Basically, it describes the result if, 1>A Jerk were to beat his dog every day, then 2>Immediately stop beating his dog, and, as a result, 3>The dog loves him more for it.
I think people are very similar to the dog. If some entity causes me extreme pain, then causes it to stop, then I will wake up the next morning professing the beauty of his creation. Or, why is it that I feel profoundly grateful when the doctor who just gave me a bone marrow biopsy finishes the procedure?
Back to symptoms...
Then there's another thing on my mind. I can feel the tumor again. To put it eloquently, when I am in the bathroom applying "butt pressure," the tumor protrudes a bit from my chest. The first time I noticed this was after I received my second biopsy; I hadn't had any chemo yet. After I had some chemo, it gradually went away until I couldn't notice it anymore.
About a month after the Stanford V ended, I noticed the tumor's presence, but it wouldn't protrude like previously.
Now, it protrudes again. However, as strange as it sounds, I think this is a good thing. First off, it is a substantially smaller protrusion than before. More like a small plum, and less like an apple. Secondly, my gut feeling is that the tumor is just "loose." Give it a biopsy, or zap it with chemo, and the supportive structure of cells holding the thing upright breaks apart, and it has mobility. So, I'm not panicked. Still, it is disconcerting.
Oh yeah, I've got to start my final term paper, due in 25 hours. "gotta keep moving..." :P
[8:25pm] Food Celebration
I forgot to mention that this is my personal spoil Austin with food month. :) I'm making good progress today.
7:30am: Three Egg Breakfast, over easy, bacon, and potatoes.
11:45am: Super Nachos (Carne Asada) with grape flavored energy drink.
5:00pm: Tempura Roll, Crunchy Delight Roll.
8:30pm: 7-11 Nachos + 4 Jack-in-the-box tacos.
Ah, what a beautiful morning! Everything's a bit more lovely without all that pain. And, believe it or not, I am not currently hopped up on Vicodin. :P I was afraid that the severity of the pain meant that it was something chronic or permanent. But it looks like it was passing. I did have to take like two Vicodin's every four hours until about 5am, when it started to resolve. It was a rough night's sleep.
Not just due to the pain, but also because of the sweating. For some reason, I was sweating a bunch -- mostly in the scalp. I'm talking, "wow, my pillow is wet" type sweating. I hope it's due to the pain medications, and not the traditional Hodge "night sweats."
By the way, I'd like to briefly mention the "Beaten Dog" analogy. It is perhaps one of the most widely applicable metaphors/analogies in existence. Basically, it describes the result if, 1>A Jerk were to beat his dog every day, then 2>Immediately stop beating his dog, and, as a result, 3>The dog loves him more for it.
I think people are very similar to the dog. If some entity causes me extreme pain, then causes it to stop, then I will wake up the next morning professing the beauty of his creation. Or, why is it that I feel profoundly grateful when the doctor who just gave me a bone marrow biopsy finishes the procedure?
Back to symptoms...
Then there's another thing on my mind. I can feel the tumor again. To put it eloquently, when I am in the bathroom applying "butt pressure," the tumor protrudes a bit from my chest. The first time I noticed this was after I received my second biopsy; I hadn't had any chemo yet. After I had some chemo, it gradually went away until I couldn't notice it anymore.
About a month after the Stanford V ended, I noticed the tumor's presence, but it wouldn't protrude like previously.
Now, it protrudes again. However, as strange as it sounds, I think this is a good thing. First off, it is a substantially smaller protrusion than before. More like a small plum, and less like an apple. Secondly, my gut feeling is that the tumor is just "loose." Give it a biopsy, or zap it with chemo, and the supportive structure of cells holding the thing upright breaks apart, and it has mobility. So, I'm not panicked. Still, it is disconcerting.
Oh yeah, I've got to start my final term paper, due in 25 hours. "gotta keep moving..." :P
[8:25pm] Food Celebration
I forgot to mention that this is my personal spoil Austin with food month. :) I'm making good progress today.
7:30am: Three Egg Breakfast, over easy, bacon, and potatoes.
11:45am: Super Nachos (Carne Asada) with grape flavored energy drink.
5:00pm: Tempura Roll, Crunchy Delight Roll.
8:30pm: 7-11 Nachos + 4 Jack-in-the-box tacos.
Sunday, August 10, 2008
[8-10-08] Back Pain ER Visit
[6:05pm]
I just got out of the ER a few hours ago. They gave me some very strong pain medication, so putting this entry together is taking a little cognitive effort. I feel like I'm in a medical drama or something -- all this action lately. The story starts yesterday afternoon...
Dan gives me a call: "Are you bored? I was thinking of getting a hotel on the Oakland waterfront." Awesome, I was truly stoked. The last time we celebrated like that was in San Francisco, like 5 years ago. I remember drinking beers in the SF hotel lobby, and getting chocolate ice cream all over the place. It was awesome.
So, here's yet another chance to live it up. Plus, it's never been just the two of us. This was a special treat. Yet one more chance to "pull one from the Devil's teeth." I agreed. "Beer's in the cellar around 5:15pm. Chopper is inbound." Six months without alcohol. I've got to live it up while I still can.
The hotel room was incredible. There was a balcony with a view of the waterfront, a giant bathroom, and the room was huge! So, we had many beers, ate excellent meat, and had a great time.
I woke up the next morning with terrible back pain. Usually, I just have to sit up, or walk around, and the pain will subside. If it's really bad, a warm bath always helps. Two warm baths later, and the pain was getting worse. I told Dan that I had to go, and left with the intention of getting some pain meds and returning later. My aunt was having a birthday party, and the plan was to head over there later in the day.
By the time I was in the hotel lobby, I knew I needed to go to the hospital. I interrupt the concierge's conversation with a customer... "Sorry to interrupt, but can you give me directions to the nearest hospital?" I then drove my motorcycle there. In retrospect, perhaps I shouldn't have, but I wanted relief fast. I didn't want to wait for anything!
I arrive at the hospital around 7:30am. I wait in line for the triage nurse, and explain: "I am experiencing tremendous back-pain." I knew it sounded trivial... I mean, I wasn't gushing blood or having a heart attack or anything. I half expected him to be like, "Go take some Tylenol, there's a 7-11 around the corner." It's back pain.
When he asked me what I would rate the pain, I said "an eight." To illustrate, at that moment, the pain was at a level where talking was difficult. I would frequently gasp, twitch, or spasm. It was simultaneously muscle and bone pain; pulsating and constant. I was trembling and sweating. I've never experienced this type of pain before. Yes, the bone marrow biopsy was a 10, but this pain had no end in sight -- it just wasn't going away.
After filling out all the forms and whatnot, I was directed to wait in urgent care. I was too ecstatic at the prospect of pain relief, at that point, to fully understand that if was a very bad thing to be sent to urgent care. This is emergency pain. Nevertheless, I waited in the lobby.
For perhaps the longest hour and a half of my life, I waited in the lobby. I expected to be called any minute. I mean, the guy *saw* how much pain I was in -- you can't just ignore that! There were many people in the urgent care waiting area, all of them looking pretty OK. On the other hand, they probably thought I was crazy. I would sit down, stand up, sit on the floor, pace the floor, walk to the triage nurse, visit the coke machines, walk around a pillar in circles, etc.. I had to keep moving. Through all of this, I'm also making little grunting noises. Suffice it to say, the security guards were keeping a good watch on me.
Then the pain began to get worse. My chest began to hurt as well -- probably due to all that labored breathing and whatnot. I couldn't handle the wait anymore. I wanted to start punching walls, or go rob a pharmacy or something. I was so frustrated with the utter relentlessness of the pain. 7th tear this year. But then I got a desperate idea! Chest pain = ER. I had chest pain. So I ran back to the triage nurse, and explained my new symptom. The triage nurse sent me back to urgent care at the front of the line, and then the urgent care nurse said: "You have chest pain? We're not equipped for that here. You need to go to the ER and get hooked up to an EKG. Go back to the triage nurse."
The triage nurse was inept. Not an uncommon trait in this hospital. At that moment, I noticed that it was a county hospital. Nevertheless, I was then escorted into the ER.
Finally! The nurse had me change into a gown, and check my vitals. No pain meds yet, but the end was in sight! I was being treated, and knowing that the pain would soon end made it much easier to handle. At around 10:00am, the doctor arrived.
He was a nice guy. He got my history and symptoms, and then immediately recognized how much pain I was in. "Well, your pulse is 133 -- that's probably because you're in so much pain right now. Your temp is 99.5. Nurse, get him 8mg of morphine. You can handle morphine, right?"
In an effort not to look like a drug-seeking morphine junkie, I tried not to smile. I failed miserably.
"Well, we can't diagnose if there's any cardiac problems at the moment -- you're trembling too much for the EKG to generate good results. Let's get you some relief, and then proceed with the tests." Works for me.
The nurse took 30 minutes to come back with the morphine. I was pissed. After she injected it, I was shocked to notice that I felt no relief. "How long does it take to have an effect?" She says, "About 30 minutes. That's because I did it intra-muscular. If I had injected it into a vain, it would've been pretty instant. Maybe I should've done that instead..." Uh, yes. You should have.
After about 30 minutes, another friendly doctor checked in on me. "How's the pain," she asks. "Still ridiculous," I say. She smiles. "Well get you something much stronger than morphine, then."
30 more minutes pass, and the doctor checks in again... "Feeling better?" "Uhm, nope -- I haven't received any more pain meds." Shocked, she storms off and finds my nurse... "Get this poor man some [name of drug], stat!"
After the nurse pokes me a few times for the IV, and gets blood all over, she begins to administer the drug (it's like 11:30am). After about 5 minutes, the pain went from a 9 to a 4. I was so relieved. I started to breathe normally, my pulse started to go down, my trembling stopped... It was so nice to be with less pain, after all this time. The drug made me really tired, but I couldn't get to sleep -- it was still too painful to doze off. But at least I felt somewhat human again.
The first doctor returns, and I express my overwhelming gratitude to be without pain. He proceeds to order scans to see if the tumor has metastasized into the spine, or if there's a clot in the lungs... They perform the tests, and give me another shot of the pain med about an hour later. At that time, the pain was nearly gone -- it was great! It did make me sweat profusely though -- that was annoying.
The doctor returns yet again, announces that all my scans were good, and writes me a prescription for vicodin. He was unable to determine what caused pain, and simply said, "If it returns we'll dig deeper. Perhaps you slept awkwardly or something." I told him that sleeping oddly doesn't cause this amount of pain. He agreed.
Then he discharged me, and told me to "Say hello to Doctor Irwin." Apparently, they knew each other.
So, I drove home, picked up the Vicodin, took two preemptively, and here I am. The pain is pretty much gone. I don't know what caused it, but I'm certainly glad it isn't there anymore. So, that's my adventure! I'm a gonna try to get some sleep now.
I just got out of the ER a few hours ago. They gave me some very strong pain medication, so putting this entry together is taking a little cognitive effort. I feel like I'm in a medical drama or something -- all this action lately. The story starts yesterday afternoon...
Dan gives me a call: "Are you bored? I was thinking of getting a hotel on the Oakland waterfront." Awesome, I was truly stoked. The last time we celebrated like that was in San Francisco, like 5 years ago. I remember drinking beers in the SF hotel lobby, and getting chocolate ice cream all over the place. It was awesome.
So, here's yet another chance to live it up. Plus, it's never been just the two of us. This was a special treat. Yet one more chance to "pull one from the Devil's teeth." I agreed. "Beer's in the cellar around 5:15pm. Chopper is inbound." Six months without alcohol. I've got to live it up while I still can.
The hotel room was incredible. There was a balcony with a view of the waterfront, a giant bathroom, and the room was huge! So, we had many beers, ate excellent meat, and had a great time.
I woke up the next morning with terrible back pain. Usually, I just have to sit up, or walk around, and the pain will subside. If it's really bad, a warm bath always helps. Two warm baths later, and the pain was getting worse. I told Dan that I had to go, and left with the intention of getting some pain meds and returning later. My aunt was having a birthday party, and the plan was to head over there later in the day.
By the time I was in the hotel lobby, I knew I needed to go to the hospital. I interrupt the concierge's conversation with a customer... "Sorry to interrupt, but can you give me directions to the nearest hospital?" I then drove my motorcycle there. In retrospect, perhaps I shouldn't have, but I wanted relief fast. I didn't want to wait for anything!
I arrive at the hospital around 7:30am. I wait in line for the triage nurse, and explain: "I am experiencing tremendous back-pain." I knew it sounded trivial... I mean, I wasn't gushing blood or having a heart attack or anything. I half expected him to be like, "Go take some Tylenol, there's a 7-11 around the corner." It's back pain.
When he asked me what I would rate the pain, I said "an eight." To illustrate, at that moment, the pain was at a level where talking was difficult. I would frequently gasp, twitch, or spasm. It was simultaneously muscle and bone pain; pulsating and constant. I was trembling and sweating. I've never experienced this type of pain before. Yes, the bone marrow biopsy was a 10, but this pain had no end in sight -- it just wasn't going away.
After filling out all the forms and whatnot, I was directed to wait in urgent care. I was too ecstatic at the prospect of pain relief, at that point, to fully understand that if was a very bad thing to be sent to urgent care. This is emergency pain. Nevertheless, I waited in the lobby.
For perhaps the longest hour and a half of my life, I waited in the lobby. I expected to be called any minute. I mean, the guy *saw* how much pain I was in -- you can't just ignore that! There were many people in the urgent care waiting area, all of them looking pretty OK. On the other hand, they probably thought I was crazy. I would sit down, stand up, sit on the floor, pace the floor, walk to the triage nurse, visit the coke machines, walk around a pillar in circles, etc.. I had to keep moving. Through all of this, I'm also making little grunting noises. Suffice it to say, the security guards were keeping a good watch on me.
Then the pain began to get worse. My chest began to hurt as well -- probably due to all that labored breathing and whatnot. I couldn't handle the wait anymore. I wanted to start punching walls, or go rob a pharmacy or something. I was so frustrated with the utter relentlessness of the pain. 7th tear this year. But then I got a desperate idea! Chest pain = ER. I had chest pain. So I ran back to the triage nurse, and explained my new symptom. The triage nurse sent me back to urgent care at the front of the line, and then the urgent care nurse said: "You have chest pain? We're not equipped for that here. You need to go to the ER and get hooked up to an EKG. Go back to the triage nurse."
The triage nurse was inept. Not an uncommon trait in this hospital. At that moment, I noticed that it was a county hospital. Nevertheless, I was then escorted into the ER.
Finally! The nurse had me change into a gown, and check my vitals. No pain meds yet, but the end was in sight! I was being treated, and knowing that the pain would soon end made it much easier to handle. At around 10:00am, the doctor arrived.
He was a nice guy. He got my history and symptoms, and then immediately recognized how much pain I was in. "Well, your pulse is 133 -- that's probably because you're in so much pain right now. Your temp is 99.5. Nurse, get him 8mg of morphine. You can handle morphine, right?"
In an effort not to look like a drug-seeking morphine junkie, I tried not to smile. I failed miserably.
"Well, we can't diagnose if there's any cardiac problems at the moment -- you're trembling too much for the EKG to generate good results. Let's get you some relief, and then proceed with the tests." Works for me.
The nurse took 30 minutes to come back with the morphine. I was pissed. After she injected it, I was shocked to notice that I felt no relief. "How long does it take to have an effect?" She says, "About 30 minutes. That's because I did it intra-muscular. If I had injected it into a vain, it would've been pretty instant. Maybe I should've done that instead..." Uh, yes. You should have.
After about 30 minutes, another friendly doctor checked in on me. "How's the pain," she asks. "Still ridiculous," I say. She smiles. "Well get you something much stronger than morphine, then."
30 more minutes pass, and the doctor checks in again... "Feeling better?" "Uhm, nope -- I haven't received any more pain meds." Shocked, she storms off and finds my nurse... "Get this poor man some [name of drug], stat!"
After the nurse pokes me a few times for the IV, and gets blood all over, she begins to administer the drug (it's like 11:30am). After about 5 minutes, the pain went from a 9 to a 4. I was so relieved. I started to breathe normally, my pulse started to go down, my trembling stopped... It was so nice to be with less pain, after all this time. The drug made me really tired, but I couldn't get to sleep -- it was still too painful to doze off. But at least I felt somewhat human again.
The first doctor returns, and I express my overwhelming gratitude to be without pain. He proceeds to order scans to see if the tumor has metastasized into the spine, or if there's a clot in the lungs... They perform the tests, and give me another shot of the pain med about an hour later. At that time, the pain was nearly gone -- it was great! It did make me sweat profusely though -- that was annoying.
The doctor returns yet again, announces that all my scans were good, and writes me a prescription for vicodin. He was unable to determine what caused pain, and simply said, "If it returns we'll dig deeper. Perhaps you slept awkwardly or something." I told him that sleeping oddly doesn't cause this amount of pain. He agreed.
Then he discharged me, and told me to "Say hello to Doctor Irwin." Apparently, they knew each other.
So, I drove home, picked up the Vicodin, took two preemptively, and here I am. The pain is pretty much gone. I don't know what caused it, but I'm certainly glad it isn't there anymore. So, that's my adventure! I'm a gonna try to get some sleep now.
Subscribe to:
Posts (Atom)
