[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.
Showing posts with label ICE. Show all posts
Showing posts with label ICE. Show all posts
Thursday, November 6, 2008
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.
Wednesday, September 24, 2008
[9-24-08] A Day in the Life
[12:32pm]
Yesterday, my hemoglobin was at 9.4. Today, who knows? One thing I do know is that I am totally tired and winded. I would boycott moving if I could.
Yesterday, when I got home, I slept, read a little, slept some more, and here I am. Sleep is good.
You know, they say anemia can effect concentration? That could explain a lot. Wait, what was I saying?
Anyhow, I got up this morning with a really weird feeling in my stomach. It was like I needed to eat something, but more dire and weirder feeling. After eating something, and taking my pills, it took an enormous amount of effort to keep everything down. I remember moving very slowly toward my ativan...
I guess I'm a bit more sensitive than I once was... and I'll definitely have to take my pills one at a time in the future.
Then I began my Neupogen injections. It is a very strange feeling to stab oneself. I think it is instinctual...
Well, it seems clear that Cytoxan has kicked my ass the most so far. Beats ICE and Stanford V. Perhaps a taste of what is to come? Now to go back to sleep.
[2:13pm]
After blissful slumber, I awoke with my stomach in knots. This is definitely hunger, but what to eat? I look across the kitchen cabinets and the more I think about food, the more my stomach shifts to nausea. Ok, food later, get a few anti-nausea pills in. The thought of pills makes it worse. My strategy: let an Ativan dissolve in the mouth, then take the other two anti-emetics.
After settling down for a few minutes, I allow my mind to reconsider the possibility of food. Nope... nothing seems to work. Except... my long-time food savior: the bagel. So, I toasted up a bagel with cream cheese and my stomach stopped acting up. I'm going to *live* off these suckers for a while!
Now that my stomach is a little happier, I can work on that 3 liters of water I need to drink today.
Yesterday, my hemoglobin was at 9.4. Today, who knows? One thing I do know is that I am totally tired and winded. I would boycott moving if I could.
Yesterday, when I got home, I slept, read a little, slept some more, and here I am. Sleep is good.
You know, they say anemia can effect concentration? That could explain a lot. Wait, what was I saying?
Anyhow, I got up this morning with a really weird feeling in my stomach. It was like I needed to eat something, but more dire and weirder feeling. After eating something, and taking my pills, it took an enormous amount of effort to keep everything down. I remember moving very slowly toward my ativan...
I guess I'm a bit more sensitive than I once was... and I'll definitely have to take my pills one at a time in the future.
Then I began my Neupogen injections. It is a very strange feeling to stab oneself. I think it is instinctual...
Well, it seems clear that Cytoxan has kicked my ass the most so far. Beats ICE and Stanford V. Perhaps a taste of what is to come? Now to go back to sleep.
[2:13pm]
After blissful slumber, I awoke with my stomach in knots. This is definitely hunger, but what to eat? I look across the kitchen cabinets and the more I think about food, the more my stomach shifts to nausea. Ok, food later, get a few anti-nausea pills in. The thought of pills makes it worse. My strategy: let an Ativan dissolve in the mouth, then take the other two anti-emetics.
After settling down for a few minutes, I allow my mind to reconsider the possibility of food. Nope... nothing seems to work. Except... my long-time food savior: the bagel. So, I toasted up a bagel with cream cheese and my stomach stopped acting up. I'm going to *live* off these suckers for a while!
Now that my stomach is a little happier, I can work on that 3 liters of water I need to drink today.
Wednesday, September 3, 2008
[9-03-08] Post ICE Appointment
[12:06pm]
I just got back from my oncology appointment in Berkeley. All that traveling (we left at 5:30am) has left me utterly exhausted! It appears I've become as pathetic, perhaps more, than the worst part of Stanford V. Last I checked, my hemoglobin was at 10.5; the worst during Stanford V was 10.1. However, my pulse today was an incredible 127! From what Barbara tells me, this is because my blood is delivering less oxygen per cell, so the heart has to pump faster. Still, under Stanford V, my pulse was never this high. Therefore, I conclude that my hemoglobin is under 10.1, and I am now at an all time low. Woohoo!
I vow to not move more than 100 feet in the next day. :P That's how tired I am.
Then there's the nausea, which is still quite annoying. For the first time, smells and tastes trigger it. I find I am very picky what foods I eat, which is strange because I can simultaneously be hungry and want to eat nothing at the same time. One morning, I nearly lost my stomach because the water tasted weird... though, the nausea is always worst in the morning.
But 1 ativan every four hours (two in emergency) always seems to do the trick.
As for the appointment itself, it was mostly good news.
First off, my doctor was extremely amazed at how well I handled the three sessions of ICE. Maybe they say that to all the patients, but the compliment felt nice, and I do think I have a resilience to the stuff.
Anyhow, my doctor talked with the Stanford doctor, and they are communicating! He seems to be under the impression that the Stanford doctor wanted a 4th ICE, but I think that's just up in the air in the moment. The important thing, is that they set up a referral appointment. During this appointment, I believe that I will be administered Cytoxan, and have apheresis performed within a few days. The only question: how soon can I get this appointment?
Additionally, my doctor seemed to indicate something quite distressing, and referred to it as a "holding pattern." Let's say that you're on your third ICE and apheresis has been performed, but the Stanford BMT rooms are currently booked. They may just give you a 4th ICE to keep the cancer in check as they wait for another room to open up. If a room was open in the first place, then no 4th ICE, and proceed to BMT. This is disturbing. I like cancer treatments to have a strategic purpose, not an administrative one.
The other distressing news was delivered in a scripted manner. Remember when the Stanford nurse was telling me about all the new tests that would need to be accomplished? "First the Muga, that's easy... then the Pet/CT, that's easy... then the Bone Marrow Biopsy, that's hard." Well, my doctor said pretty much the same thing verbatim. They know you're terrified about this, and perhaps they all go to the same seminar on how to deliver the bad news. I swear, my physician delivered the news that I had cancer far more directly and bluntly than the news that I need a bone marrow biopsy.
We told him that we weren't going to do it without sedation of some kind. I asked him if there was a way he could perform the procedure in a "humane" way. He looked a little flustered and apologetic at this. Perhaps I should have worded that differently. "We used to provide some sort of sedation for the procedure," he said, "but the new FDA regulations are unreasonable regarding the amount of equipment and manpower for a conscious sedation bone marrow biopsy." [Damn the FDA]
We told him that we would seek out other places that would perform this procedure. He said that there were places that would do this, but also warned that "Stanford may want to do things their way." It's funny, the threat of a bone marrow biopsy this time around did not illicit the emotional response of last time. Knowing that I would be sedated, or something, at all costs, gave me the comfort I needed. Even if I have to go to downtown Oakland for heroin before my biopsy...ok, maybe not that far...but you get my point!
It's good to have my normal oncologist back from vacation. He went to Ecuador. So I asked him, "I'm dying to know -- did you go to Galapagos?" He looked genuinely pleased that I asked, and then told me that he did not. That's like going to Egypt without visiting the pyramids! Oh well.
I just got back from my oncology appointment in Berkeley. All that traveling (we left at 5:30am) has left me utterly exhausted! It appears I've become as pathetic, perhaps more, than the worst part of Stanford V. Last I checked, my hemoglobin was at 10.5; the worst during Stanford V was 10.1. However, my pulse today was an incredible 127! From what Barbara tells me, this is because my blood is delivering less oxygen per cell, so the heart has to pump faster. Still, under Stanford V, my pulse was never this high. Therefore, I conclude that my hemoglobin is under 10.1, and I am now at an all time low. Woohoo!
I vow to not move more than 100 feet in the next day. :P That's how tired I am.
Then there's the nausea, which is still quite annoying. For the first time, smells and tastes trigger it. I find I am very picky what foods I eat, which is strange because I can simultaneously be hungry and want to eat nothing at the same time. One morning, I nearly lost my stomach because the water tasted weird... though, the nausea is always worst in the morning.
But 1 ativan every four hours (two in emergency) always seems to do the trick.
As for the appointment itself, it was mostly good news.
First off, my doctor was extremely amazed at how well I handled the three sessions of ICE. Maybe they say that to all the patients, but the compliment felt nice, and I do think I have a resilience to the stuff.
Anyhow, my doctor talked with the Stanford doctor, and they are communicating! He seems to be under the impression that the Stanford doctor wanted a 4th ICE, but I think that's just up in the air in the moment. The important thing, is that they set up a referral appointment. During this appointment, I believe that I will be administered Cytoxan, and have apheresis performed within a few days. The only question: how soon can I get this appointment?
Additionally, my doctor seemed to indicate something quite distressing, and referred to it as a "holding pattern." Let's say that you're on your third ICE and apheresis has been performed, but the Stanford BMT rooms are currently booked. They may just give you a 4th ICE to keep the cancer in check as they wait for another room to open up. If a room was open in the first place, then no 4th ICE, and proceed to BMT. This is disturbing. I like cancer treatments to have a strategic purpose, not an administrative one.
The other distressing news was delivered in a scripted manner. Remember when the Stanford nurse was telling me about all the new tests that would need to be accomplished? "First the Muga, that's easy... then the Pet/CT, that's easy... then the Bone Marrow Biopsy, that's hard." Well, my doctor said pretty much the same thing verbatim. They know you're terrified about this, and perhaps they all go to the same seminar on how to deliver the bad news. I swear, my physician delivered the news that I had cancer far more directly and bluntly than the news that I need a bone marrow biopsy.
We told him that we weren't going to do it without sedation of some kind. I asked him if there was a way he could perform the procedure in a "humane" way. He looked a little flustered and apologetic at this. Perhaps I should have worded that differently. "We used to provide some sort of sedation for the procedure," he said, "but the new FDA regulations are unreasonable regarding the amount of equipment and manpower for a conscious sedation bone marrow biopsy." [Damn the FDA]
We told him that we would seek out other places that would perform this procedure. He said that there were places that would do this, but also warned that "Stanford may want to do things their way." It's funny, the threat of a bone marrow biopsy this time around did not illicit the emotional response of last time. Knowing that I would be sedated, or something, at all costs, gave me the comfort I needed. Even if I have to go to downtown Oakland for heroin before my biopsy...ok, maybe not that far...but you get my point!
It's good to have my normal oncologist back from vacation. He went to Ecuador. So I asked him, "I'm dying to know -- did you go to Galapagos?" He looked genuinely pleased that I asked, and then told me that he did not. That's like going to Egypt without visiting the pyramids! Oh well.
Tuesday, September 2, 2008
[9-02-08] Complaining
[12:35pm]
Two are two people admitted for the same thing in the same hospital: both have accidentally cut off a finger and are bleeding profusely.
The first man screams to the triage nurse, "Ohmygod ohmygod, it HURTS SOOOOO MUCH!!! The PaiN, the aGoNy!!!!. Why me? Why does this have to happen to me??"
The second man calmly approaches the triage nurse, "I seem to have cut off my finger. It is extremely painful."
For both patients, the nurse jots down: "Patient complained of pain due to finger loss."
It seems that complaining, in a medical sense, simply means reporting something negative or distressing. With that in mind, I would like to do some complaining.
So...
I didn't really write all of what I thought...Why was I so upset yesterday?
1:I was homesick. After being away from home for so long, I began to miss all of those wonderful things associated with home.
2:I missed my family, and wanted to tell them what was new in my life, and to find out what was new in theirs. Also, I wanted to see my nieces.
3:I was extremely tired from the trip, and just wanted to lie down. In addition, I was craving my own bed for days now.
4:It's cancer, exerting yet more control on my life.
Ok, now why was I so upset to stay on the boat? First off, I'd like to say that Barbara has been great: she sat me in a comfy corner, did my laundry, purchased food, fed me, and kept me entertained as she cleared room for me to live in. All I had to do was play my little DS until everything was ready.
So, as with every small yacht, there are some things which are more difficult. For example, very quick showers and a pump toilet. And for the person with low hemoglobin, it takes a great deal of effort to make it from the forward berth (bed) to the aft toilet. This trip may happen quite often. It's also Barbara's office, so the small area is quite full of stuff. Anyhow, I'll leave out the rest. Nevertheless, it's not optimal for neutropenic cancer patients.
Ok, enough complaining -- now for some good news! It looks like I wont have another ICE treatment! I sent the following letter to my Stanford Doctor:
I got back the following reply:
So... awesome! I could be getting the transplant sooner than I thought! Oh, and I have an appointment with my oncologist tomorrow morning! So things are moving smoothly!
Two are two people admitted for the same thing in the same hospital: both have accidentally cut off a finger and are bleeding profusely.
The first man screams to the triage nurse, "Ohmygod ohmygod, it HURTS SOOOOO MUCH!!! The PaiN, the aGoNy!!!!. Why me? Why does this have to happen to me??"
The second man calmly approaches the triage nurse, "I seem to have cut off my finger. It is extremely painful."
For both patients, the nurse jots down: "Patient complained of pain due to finger loss."
It seems that complaining, in a medical sense, simply means reporting something negative or distressing. With that in mind, I would like to do some complaining.
So...
I didn't really write all of what I thought...Why was I so upset yesterday?
1:I was homesick. After being away from home for so long, I began to miss all of those wonderful things associated with home.
2:I missed my family, and wanted to tell them what was new in my life, and to find out what was new in theirs. Also, I wanted to see my nieces.
3:I was extremely tired from the trip, and just wanted to lie down. In addition, I was craving my own bed for days now.
4:It's cancer, exerting yet more control on my life.
Ok, now why was I so upset to stay on the boat? First off, I'd like to say that Barbara has been great: she sat me in a comfy corner, did my laundry, purchased food, fed me, and kept me entertained as she cleared room for me to live in. All I had to do was play my little DS until everything was ready.
So, as with every small yacht, there are some things which are more difficult. For example, very quick showers and a pump toilet. And for the person with low hemoglobin, it takes a great deal of effort to make it from the forward berth (bed) to the aft toilet. This trip may happen quite often. It's also Barbara's office, so the small area is quite full of stuff. Anyhow, I'll leave out the rest. Nevertheless, it's not optimal for neutropenic cancer patients.
Ok, enough complaining -- now for some good news! It looks like I wont have another ICE treatment! I sent the following letter to my Stanford Doctor:
Since I have not yet heard from Stanford, I thought I would post my current situation regarding my treatment. Perhaps this will help solidify a schedule for my transfer into Stanford care.
The latest Pet/CT scan, taken 13 days after ICE cycle #2 shows a partial response to the treatment so far. Tumor size has reduced about 10%, and the metabolism has decreased 60% (from a 5 to a 2).
My doctor considers this very good news.
Accordingly, he has scheduled two more cycles of ICE. When I asked him about apheresis, he said that he will do what Stanford recommends. Unfortunately, it seems he has not contacted you all yet -- he said that he would try sometime next week
Apheresis is a big concern right now because, as I understand it, it is possible to expedite the collection of stem cells by combining ICE with G-CSF or some such. I am aware that Cytoxan mobilization is probably the current choice, but it looks like that introduces more delay, and I would like to try my hardest to begin treatment as soon as possible.
If at all possible, would you be willing to coordinate with myself or my doctors to help make it so that I begin outpatient chemo at Stanford as soon as possible? Perhaps starting with apheresis?
Please let me if there is anything else you would like to know. Also, please let me know what you think, or if you could outline a possible schedule for treatment.
Thank you,
- Austin
I got back the following reply:
I have not heard from Dr. Irwin yet so thank you for the update. With some residual disease present after the 2nd ICE, I agree with proceeding to the 3rd ICE- It is my plan to give you cyclophosphamide after this cycle 3 and collect the stem cells off of the cyclophosphamide. A fourth ICE is likely not necessary with your disease responding and our plan to go forward with transplant (keeps the toxicity down).
Zoe should be back in the office after the holiday and will get your calendar set up. There has been no lost time and everything is moving forward smoothly, so not to worry. Thanks again for the message.
So... awesome! I could be getting the transplant sooner than I thought! Oh, and I have an appointment with my oncologist tomorrow morning! So things are moving smoothly!
Saturday, August 30, 2008
[8-30-08] ICE, day 4
[11:33am]
Finally! The final day of ICE! Of course, I just found out that they are starting it at 8:00pm. We started around 5 yesterday, so I was hoping to keep moving the chemo up in time... guess I got my hopes up.
Anyhow, I got to meet Dr. Wexler today, so I asked her about the mysterious "maximum dose" of Ifosfamide question. Her response was that Dr. Irwin probably wrote out the first order, and Dr. Cecchi wrote the second. She continued that Dr. Irwin probably was working off of some maximum dosage per body weight, while Dr. Cecchi was using the standard surface area. Nevertheless, I don't like dose reductions. It's good I'm getting the full dose now.
It feels like my appetite is coming back... maybe it was a rough third day. I anticipate not having to beg for as much Ativan today :P Nevertheless, I am quite tired -- I think I'll go back to sleep and sleep the day away.
[7:54pm]
I did spend most of the day sleeping. That is, until my back started hurting. So I asked for some Vicodin and slept some more :P It was a good strategy.
Still, the parts of my day where I was awake was quite uneventful... In other words, boooorrrinnng.
I did manage to start playing Final Fantasy IV on the DS -- TJ may have been right to recommend this. A fresh spin on a classic game.
Today I checked the neutrophil and WBC counts and did the formula outlined in the previous post. Although my WBC went up by 0.2, my neutrophils dropped my 20% -- so my new Neutropenia number is 588. Going down...
Once I get under 500, I'm in the major leagues :P
Finally! The final day of ICE! Of course, I just found out that they are starting it at 8:00pm. We started around 5 yesterday, so I was hoping to keep moving the chemo up in time... guess I got my hopes up.
Anyhow, I got to meet Dr. Wexler today, so I asked her about the mysterious "maximum dose" of Ifosfamide question. Her response was that Dr. Irwin probably wrote out the first order, and Dr. Cecchi wrote the second. She continued that Dr. Irwin probably was working off of some maximum dosage per body weight, while Dr. Cecchi was using the standard surface area. Nevertheless, I don't like dose reductions. It's good I'm getting the full dose now.
It feels like my appetite is coming back... maybe it was a rough third day. I anticipate not having to beg for as much Ativan today :P Nevertheless, I am quite tired -- I think I'll go back to sleep and sleep the day away.
[7:54pm]
I did spend most of the day sleeping. That is, until my back started hurting. So I asked for some Vicodin and slept some more :P It was a good strategy.
Still, the parts of my day where I was awake was quite uneventful... In other words, boooorrrinnng.
I did manage to start playing Final Fantasy IV on the DS -- TJ may have been right to recommend this. A fresh spin on a classic game.
Today I checked the neutrophil and WBC counts and did the formula outlined in the previous post. Although my WBC went up by 0.2, my neutrophils dropped my 20% -- so my new Neutropenia number is 588. Going down...
Once I get under 500, I'm in the major leagues :P
Friday, August 29, 2008
[8-29-09] ICE, day 3
[8:32am]
Finally, I get to have meals that I've ordered on their little menu! I ordered scrambled eggs, with bagels, and a special request for bacon. They gave me pancakes instead of eggs. For anyone who knows me, they will know two things: 1> I loathe pancakes, and 2> My entire breakfast-eating system has effectively been shut down. The egg is a catalyst between the bread and the bacon... a necessary conduit, if you will. My only option: eat the bacon straight and be a little hungry (which is actually OK, because my appetite is waning a bit anyways). I find it remarkable how much I talk about food in this blog...
[10:33am]
Lab work is in! The results are:
WBC (White Blood Count): 1.2 (Normal 4.8 to 10.8)
RBC (Red Blood Count): 3.5 (Normal 4.7 to 6.1)
Hemoglobin: 10.7 (Normal 14 to 18)
Neutrophils: 63 (Normal 35 to 75)
I included neutrophils becuase I recently learned something called a "neutropenia score." If you are below 1000 in this score, you're neutropenic and immunosupressed.
The formula is: (Neutrophils/100) * (WBC*1000) = Neutropenia Score
So, I am: (63/100) * (1.2*1000) = .63*1200 = 756.
This means I have moderate neutropenia. With a WBC of 1.2, this would normally be severe, but my neutrophils are hanging in there at the moment (within normal range!).
As for the hemoglobin. I feel pretty ok right now, but I know from experience that once that number hits 10 or below, then things break down.
In the realm of side-effects, nausea has been more consistent with this cycle. I've asked for ativan so much, I think they're just giving it to me every four hours now. Works for me! Now the nausea hasn't shown up at all. However, food still doesn't seems appetizing. It may be time to take on the approach taught by Liz's mom: chicken noodle soup and popsicles!
As for everything else, I am doing well. Just sitting around playing "Final Fantasy XII: Revenant Wings" on my DS -- it's quite addictive.
Hopefully, I'll get chemo earlier today. I want to be able to go apartment hunting with Liz on Sunday.
[6:03pm]
Woohoo! Chemo has just started with the Cisplatin! So it looks like I'll get out of here in-time. That's good news. Interestingly, I noticed that my dose for ifosfamide was increased from 1750mg to 2200mg. That's quite a big difference if you consider that I've been getting 195mg of Cisplatin. If you've read only of my earlier posts, you'll notice this discrepancy...
The maximum dose for Ifosfamide is 1000mg/m^2. My surface area is 2.2m^2, thus I should achieve 2200mg of Ifosfamide. When I questioned the nurses as to why I was receiving 1750mg, they speculated about maximum dose in such a short time (such as 7000mg). I am skeptical... why, then, am I now able to have 8800mg in four days??
Either: 1: Someone screwed up.
or: 2: They acknowledged my tolerance and decided I could handle a higher dose.
or: 3: They planned to gradually up the dose all along.
I just hope it's not #1. Or maybe Irwin's orders differed from Cecchi's. Who knows? When I looked at the chart, I saw 1750mg crossed out and replaced with 2200mg. Consider what might have happened if I had 2200mg all along? Remember that dose reduction study. Please be #2 or #3, and let all be right in the world.
This also explains why this round of chemo is rougher than the last two -- I'm getting almost 20% more chemo (by volume).
Finally, I get to have meals that I've ordered on their little menu! I ordered scrambled eggs, with bagels, and a special request for bacon. They gave me pancakes instead of eggs. For anyone who knows me, they will know two things: 1> I loathe pancakes, and 2> My entire breakfast-eating system has effectively been shut down. The egg is a catalyst between the bread and the bacon... a necessary conduit, if you will. My only option: eat the bacon straight and be a little hungry (which is actually OK, because my appetite is waning a bit anyways). I find it remarkable how much I talk about food in this blog...
[10:33am]
Lab work is in! The results are:
WBC (White Blood Count): 1.2 (Normal 4.8 to 10.8)
RBC (Red Blood Count): 3.5 (Normal 4.7 to 6.1)
Hemoglobin: 10.7 (Normal 14 to 18)
Neutrophils: 63 (Normal 35 to 75)
I included neutrophils becuase I recently learned something called a "neutropenia score." If you are below 1000 in this score, you're neutropenic and immunosupressed.
Mild neutropenia (1000 <= ANC < 1500) — minimal risk of infection
Moderate neutropenia (500 <= ANC < 1000) — moderate risk of infection
Severe neutropenia (ANC < 500) — severe risk of infection.
The formula is: (Neutrophils/100) * (WBC*1000) = Neutropenia Score
So, I am: (63/100) * (1.2*1000) = .63*1200 = 756.
This means I have moderate neutropenia. With a WBC of 1.2, this would normally be severe, but my neutrophils are hanging in there at the moment (within normal range!).
As for the hemoglobin. I feel pretty ok right now, but I know from experience that once that number hits 10 or below, then things break down.
In the realm of side-effects, nausea has been more consistent with this cycle. I've asked for ativan so much, I think they're just giving it to me every four hours now. Works for me! Now the nausea hasn't shown up at all. However, food still doesn't seems appetizing. It may be time to take on the approach taught by Liz's mom: chicken noodle soup and popsicles!
As for everything else, I am doing well. Just sitting around playing "Final Fantasy XII: Revenant Wings" on my DS -- it's quite addictive.
Hopefully, I'll get chemo earlier today. I want to be able to go apartment hunting with Liz on Sunday.
[6:03pm]
Woohoo! Chemo has just started with the Cisplatin! So it looks like I'll get out of here in-time. That's good news. Interestingly, I noticed that my dose for ifosfamide was increased from 1750mg to 2200mg. That's quite a big difference if you consider that I've been getting 195mg of Cisplatin. If you've read only of my earlier posts, you'll notice this discrepancy...
The maximum dose for Ifosfamide is 1000mg/m^2. My surface area is 2.2m^2, thus I should achieve 2200mg of Ifosfamide. When I questioned the nurses as to why I was receiving 1750mg, they speculated about maximum dose in such a short time (such as 7000mg). I am skeptical... why, then, am I now able to have 8800mg in four days??
Either: 1: Someone screwed up.
or: 2: They acknowledged my tolerance and decided I could handle a higher dose.
or: 3: They planned to gradually up the dose all along.
I just hope it's not #1. Or maybe Irwin's orders differed from Cecchi's. Who knows? When I looked at the chart, I saw 1750mg crossed out and replaced with 2200mg. Consider what might have happened if I had 2200mg all along? Remember that dose reduction study. Please be #2 or #3, and let all be right in the world.
This also explains why this round of chemo is rougher than the last two -- I'm getting almost 20% more chemo (by volume).
Wednesday, August 27, 2008
[8-27-08] ICE again, naturally
[1:58pm]
I need FOOD! On the hospital patient guide, it specifies that lunch is to promptly arrive between 11:00am and 1:00pm. Around here, in the oncology department, that usually means that we get lunch at 1:00pm. I'm used to that, so I've been patiently waiting... To my horror, I just learned that I've been forgotten! Even worse, they are prohibiting me from walking to the cafeteria!
Fortunately, I've bribed one of the guards -- she's going to try to smuggle something in.
Onto less important stuff...
I haven't really elaborated how I feel regarding my scan results. Truthfully, I am pleased with the results. Not ecstatic; not depressed... pleased.
Apparently, this sort of casual attitude really annoys oncologists. It makes sense: they have to deliver so much bad news to so many people; any chance to deliver good news is a prized opportunity. It's a bit of a buzzkill if the patient already expects and calmly acknowledges the good news. Oh well -- I can't help that.
But basically, I got exactly what I expected. Actually, not exactly. I expected the tumor to shrink, say, 35%. Not enough to head straight for Stanford, but enough to justify a BMT and continue ICE treatment. Technically, my results were substantially better than that. Even though the tumor only decreased in size by about ten percent, its metabolism went from a 5 to a 2. So I really have a 60% reduction. Call me old fashioned, but I want the thing to shrink a bunch too.
Regardless, I can now go to Stanford (yay!), and I will get 2 more ICE sessions. Now that I think about it -- I am relieved. If the ICE did nothing, I would be in a very bad situation. But now, I can start making long-term plans again. So... good.
but... I was just now starting to recover from the last ICE treatment! I mean, it wasn't all that harsh, but there were certain disadvantages... My stomach has just returned to me a few days ago: I can eat *anything* again! And, with regard to the opposite of eating, things have returned to nominal (mostly) functionality! It's one of those things that you don't miss until you lose it. Let me tell you, I can truly appreciate it right now.
Now, I get to go back to the hospital and lose all that yet again. That sucks! Bah.
Maybe this time, the ICE will put up more of a fight. In a way, I want my opponent to be more of a challenge. Like a ten year old beating up a heavyweight boxer... I'm kind of embarrassed for him. Let him get in a few punches just to keep up appearances...this is too easy.
Anyhow, I forgot my notebook charger!! How could I do that?!?! I'm a nerd for crying out loud! That's like forgetting to put on pants in the morning! So, my battery has a few minutes left. So, ta ta for now.
I need FOOD! On the hospital patient guide, it specifies that lunch is to promptly arrive between 11:00am and 1:00pm. Around here, in the oncology department, that usually means that we get lunch at 1:00pm. I'm used to that, so I've been patiently waiting... To my horror, I just learned that I've been forgotten! Even worse, they are prohibiting me from walking to the cafeteria!
Fortunately, I've bribed one of the guards -- she's going to try to smuggle something in.
Onto less important stuff...
I haven't really elaborated how I feel regarding my scan results. Truthfully, I am pleased with the results. Not ecstatic; not depressed... pleased.
Apparently, this sort of casual attitude really annoys oncologists. It makes sense: they have to deliver so much bad news to so many people; any chance to deliver good news is a prized opportunity. It's a bit of a buzzkill if the patient already expects and calmly acknowledges the good news. Oh well -- I can't help that.
But basically, I got exactly what I expected. Actually, not exactly. I expected the tumor to shrink, say, 35%. Not enough to head straight for Stanford, but enough to justify a BMT and continue ICE treatment. Technically, my results were substantially better than that. Even though the tumor only decreased in size by about ten percent, its metabolism went from a 5 to a 2. So I really have a 60% reduction. Call me old fashioned, but I want the thing to shrink a bunch too.
Regardless, I can now go to Stanford (yay!), and I will get 2 more ICE sessions. Now that I think about it -- I am relieved. If the ICE did nothing, I would be in a very bad situation. But now, I can start making long-term plans again. So... good.
but... I was just now starting to recover from the last ICE treatment! I mean, it wasn't all that harsh, but there were certain disadvantages... My stomach has just returned to me a few days ago: I can eat *anything* again! And, with regard to the opposite of eating, things have returned to nominal (mostly) functionality! It's one of those things that you don't miss until you lose it. Let me tell you, I can truly appreciate it right now.
Now, I get to go back to the hospital and lose all that yet again. That sucks! Bah.
Maybe this time, the ICE will put up more of a fight. In a way, I want my opponent to be more of a challenge. Like a ten year old beating up a heavyweight boxer... I'm kind of embarrassed for him. Let him get in a few punches just to keep up appearances...this is too easy.
Anyhow, I forgot my notebook charger!! How could I do that?!?! I'm a nerd for crying out loud! That's like forgetting to put on pants in the morning! So, my battery has a few minutes left. So, ta ta for now.
Tuesday, August 26, 2008
[8-26-08] Scan Results!
[8:12pm]
Sorry about the late post -- we just now returned from Berkeley. It's a 1.5 hour drive, but we stopped at several places to go shopping. It was nice to treat myself further :P
Anyhow, onto the results! The doctor seemed to think that the scan results were quite good. The tumor size itself decreased by about 10%, but what really matters -- apparently -- is the metabolism, which decreased from a 5 to a 2.
This more than justifies that I am responsive to ICE, and thus makes me eligible for a BMT! Woohoo! Anyhow, the plan is to try two more ICE treatments. Also, we need to further coordinate with Stanford to make sure the apheresis goes well.
Ok, gotta celebrate my last day of freedom -- headed back to the hospital for more ICE tomorrow. I'll post much more tomorrow.
Sorry about the late post -- we just now returned from Berkeley. It's a 1.5 hour drive, but we stopped at several places to go shopping. It was nice to treat myself further :P
Anyhow, onto the results! The doctor seemed to think that the scan results were quite good. The tumor size itself decreased by about 10%, but what really matters -- apparently -- is the metabolism, which decreased from a 5 to a 2.
This more than justifies that I am responsive to ICE, and thus makes me eligible for a BMT! Woohoo! Anyhow, the plan is to try two more ICE treatments. Also, we need to further coordinate with Stanford to make sure the apheresis goes well.
Ok, gotta celebrate my last day of freedom -- headed back to the hospital for more ICE tomorrow. I'll post much more tomorrow.
Saturday, August 23, 2008
[8-23-08] Worries vs. Sleep
[6:32am]
Part of the reason that I can't get back to sleep is because I keep worrying about things. Yes, yes, I'm supposed to be on vacation, but that's never been able to stop me from scrutinize the countless permutations of possible future events. I think I'm quite adept at worrying. :P
So, what am I worrying about?
A bit of background first: When I lost all my hair, I didn't actually lose all of my hair. There are these "baby" hair follicles that don't seem to be effected by the chemo. These are the follicles with really thin and light blond hair. So thin and light, that you wouldn't notice that I actually had hair until you looked really hard.
So, of course, that leads right into the cancer that I'm worried about. And, yes, I know I am hypersensitive about it... but... I've noticed that some of my facial hair started to grow back. I'm getting a stubbly chin with those thick black hairs -- far different than those baby blond follicles. So, in a way, I was OK with the baby follicles not being killed -- they aren't normal hair. But these chin hairs, they are normal hair. I'm supposed to be losing hair, not gaining it!
I'm probably looking waaaaaaay too far into it. But that's what I do. If I had a pet-CT machine in my closet, I'd do a scan every day. Since I don't, then I speculate on whatever I can find.
Then there's the tumor itself. In the brief moments where I can feel it, it seems like I can feel it more recently. Of course, this can mean one of four things:
1:It's all in your head.
2:The tumor is growing.
3:The tumor is the same size, but somehow easier to move (and thus be detected by me).
4:See #1.
Regardless, my faith in ICE has gone down since I last wrote about it. I'm not as optimistic that everything can be done in two cycles. I mean, without a doubt, there still is a tumor there. It sure doesn't seem like a 50% reduction to me. Of course, that could all just be benign tissue. So many variables...
Four cycles *sigh*, I can handle that. At least that'll give us a chance to nag Stanford to do apheresis in tandem with ICE. I just want my re-birthday to come soon.
The other thing I was worrying about was finances and whatnot. First off, withdrawing next semester means that I will lose a semester of financial aid eligibility. So, somehow, when I return to school, I'll have to find the money somewhere. Plus, I've got a huge amount of credit card debt. If I can get rid of that interest somehow, then maybe I can start saving up for that semester without financial aid.
Ugh... then, in the Stanford BMT guide, it says to expect prescription costs of up to $10,000. Neupogen is expensive, I hear.
Of course, through all of this, I have that voice that continually reminds me that there is a possibility I wont even be here in a while. In which case, I feel compelled to rack up more debt and go to Galapagos! But it's true -- it's really hard to think about 20 year repayment plans at a time like this.
These are just some of the thoughts keeping me up.
Part of the reason that I can't get back to sleep is because I keep worrying about things. Yes, yes, I'm supposed to be on vacation, but that's never been able to stop me from scrutinize the countless permutations of possible future events. I think I'm quite adept at worrying. :P
So, what am I worrying about?
A bit of background first: When I lost all my hair, I didn't actually lose all of my hair. There are these "baby" hair follicles that don't seem to be effected by the chemo. These are the follicles with really thin and light blond hair. So thin and light, that you wouldn't notice that I actually had hair until you looked really hard.
So, of course, that leads right into the cancer that I'm worried about. And, yes, I know I am hypersensitive about it... but... I've noticed that some of my facial hair started to grow back. I'm getting a stubbly chin with those thick black hairs -- far different than those baby blond follicles. So, in a way, I was OK with the baby follicles not being killed -- they aren't normal hair. But these chin hairs, they are normal hair. I'm supposed to be losing hair, not gaining it!
I'm probably looking waaaaaaay too far into it. But that's what I do. If I had a pet-CT machine in my closet, I'd do a scan every day. Since I don't, then I speculate on whatever I can find.
Then there's the tumor itself. In the brief moments where I can feel it, it seems like I can feel it more recently. Of course, this can mean one of four things:
1:It's all in your head.
2:The tumor is growing.
3:The tumor is the same size, but somehow easier to move (and thus be detected by me).
4:See #1.
Regardless, my faith in ICE has gone down since I last wrote about it. I'm not as optimistic that everything can be done in two cycles. I mean, without a doubt, there still is a tumor there. It sure doesn't seem like a 50% reduction to me. Of course, that could all just be benign tissue. So many variables...
Four cycles *sigh*, I can handle that. At least that'll give us a chance to nag Stanford to do apheresis in tandem with ICE. I just want my re-birthday to come soon.
The other thing I was worrying about was finances and whatnot. First off, withdrawing next semester means that I will lose a semester of financial aid eligibility. So, somehow, when I return to school, I'll have to find the money somewhere. Plus, I've got a huge amount of credit card debt. If I can get rid of that interest somehow, then maybe I can start saving up for that semester without financial aid.
Ugh... then, in the Stanford BMT guide, it says to expect prescription costs of up to $10,000. Neupogen is expensive, I hear.
Of course, through all of this, I have that voice that continually reminds me that there is a possibility I wont even be here in a while. In which case, I feel compelled to rack up more debt and go to Galapagos! But it's true -- it's really hard to think about 20 year repayment plans at a time like this.
These are just some of the thoughts keeping me up.
Thursday, August 21, 2008
[8-21-08] Vacation
[11:47am]
My appointment for the super important pet-CT scan is scheduled for Monday, the 25th. The following day, I will meet with an oncologist in Berkeley (mine remains on vacation) to discuss the next step. Will I have 2 more ICE treatments? Can I use the salvage ICE for apheresis, instead of waiting longer and using Cytoxan? When will Stanford begin their part? Hopefully, all these questions will be answered by then.
Until then, I am on vacation. School is far away from here; treatment is far away from here. Until the 25th, there's not much I can fret about... or reason to do so. It's not just the distance -- it really feels as if the whole "cancer" thing is further from my mind, here. Plus, there's the whole "don't sweat the small stuff" feeling that arises when there's a diagnosis of this magnitude. So, basically, here I am, without a worry in the world... for the next 4 days. Until then: it's vacation.
After the 25th? Who knows? Treatment could pick up pace (which I hope), or I could have yet more time to burn. Regardless, I'm not counting the month or so in Stanford in my vacation category -- that's probably not going to be a picnic.
My current plan? To have a good time, of course. Tentatively, that also includes a new video game every day. :) Yesterday was Sid Meier's Civilization Revolution -- a pretty fun game where you strategically build and develop a civilization from scratch. Today is a game called Condemned -- I haven't yet played it, but it looks like some sort of horror/sci-fi adventure. Looks fun.
[5:49pm]
I've been spending the day help Dan install a new bathtub. It's a lot of work, and I do get more tired easily, but it is nice to know that I'm still capable, ya know? Those hemoglobins aren't going to stay high forever.
My appointment for the super important pet-CT scan is scheduled for Monday, the 25th. The following day, I will meet with an oncologist in Berkeley (mine remains on vacation) to discuss the next step. Will I have 2 more ICE treatments? Can I use the salvage ICE for apheresis, instead of waiting longer and using Cytoxan? When will Stanford begin their part? Hopefully, all these questions will be answered by then.
Until then, I am on vacation. School is far away from here; treatment is far away from here. Until the 25th, there's not much I can fret about... or reason to do so. It's not just the distance -- it really feels as if the whole "cancer" thing is further from my mind, here. Plus, there's the whole "don't sweat the small stuff" feeling that arises when there's a diagnosis of this magnitude. So, basically, here I am, without a worry in the world... for the next 4 days. Until then: it's vacation.
After the 25th? Who knows? Treatment could pick up pace (which I hope), or I could have yet more time to burn. Regardless, I'm not counting the month or so in Stanford in my vacation category -- that's probably not going to be a picnic.
My current plan? To have a good time, of course. Tentatively, that also includes a new video game every day. :) Yesterday was Sid Meier's Civilization Revolution -- a pretty fun game where you strategically build and develop a civilization from scratch. Today is a game called Condemned -- I haven't yet played it, but it looks like some sort of horror/sci-fi adventure. Looks fun.
[5:49pm]
I've been spending the day help Dan install a new bathtub. It's a lot of work, and I do get more tired easily, but it is nice to know that I'm still capable, ya know? Those hemoglobins aren't going to stay high forever.
Sunday, August 17, 2008
[8-17-08] ICE, Day Four
[11:36am]
I felt like sleeping most of today, so I did. And it was good; I just woke up. *yawn* They're starting the chemo in a few minutes, so that means I should be out of here by, say, 12pm on Monday! Woohoo!
My head looks very "spotted" this morning. I haven't been removing head hair, but it seems to naturally fall out in spots. Fascinating.
[12:10pm]
Sitting around the hospital all day, you become familiar with the nurses and get to know them. You also get to easily recognize how skilled and thorough they are. Some nurses forget to have the ifosfamide and the saline pump simultaneously and two separate pumps. Some, tape the tubing on your chest oddly so that it occludes. Some, forget to check the bandage holding your port, and allow it to nearly fall off before I have to say something. Lots of mistakes all over the place; nothing super critical, however, but after a while you notice these things.
One nurse, however, is just simply exceptional. And get this: he is a Nurse Assistant, not a Registered Nurse, like most of those handling chemo around here. He hasn't made a single mistake, he is extremely thorough, is extremely polite, and does things like make my bed (which no one else here does) or pick up a few bits of trash about the room. He's also the nurse yesterday that fronted my take-out bill. His name is Jibril, and he's been a nurse in the US for only 5 years (previously in Samoa). Get this: he chooses to be a nurse assistant, because he's afraid his language barrier may cause trouble at a critical moment or something. His rank in Samoa was higher. Anyhow, I just wanted to say a few good words about him because he's awesome.
[3:20pm]
Great news! I just saw my doctor, and I asked her if we could expedite the discharge process. She said that she'll get all the paperwork done tonight, and that I could leave when I choose tomorrow morning. That'll make moving out of my dorm much easier. I could get everything prepared before transport arrives.
On the hair front, it's 98% gone. I just got annoyed at it falling out all over the place, so I spent about 10 minutes just running my hands through it. It fell like snow. There are still some odd spots that wont come out, but, all in all, it looks better than it did. And feels better.
Watching: Austin Powers marathon!
I felt like sleeping most of today, so I did. And it was good; I just woke up. *yawn* They're starting the chemo in a few minutes, so that means I should be out of here by, say, 12pm on Monday! Woohoo!
My head looks very "spotted" this morning. I haven't been removing head hair, but it seems to naturally fall out in spots. Fascinating.
[12:10pm]
Sitting around the hospital all day, you become familiar with the nurses and get to know them. You also get to easily recognize how skilled and thorough they are. Some nurses forget to have the ifosfamide and the saline pump simultaneously and two separate pumps. Some, tape the tubing on your chest oddly so that it occludes. Some, forget to check the bandage holding your port, and allow it to nearly fall off before I have to say something. Lots of mistakes all over the place; nothing super critical, however, but after a while you notice these things.
One nurse, however, is just simply exceptional. And get this: he is a Nurse Assistant, not a Registered Nurse, like most of those handling chemo around here. He hasn't made a single mistake, he is extremely thorough, is extremely polite, and does things like make my bed (which no one else here does) or pick up a few bits of trash about the room. He's also the nurse yesterday that fronted my take-out bill. His name is Jibril, and he's been a nurse in the US for only 5 years (previously in Samoa). Get this: he chooses to be a nurse assistant, because he's afraid his language barrier may cause trouble at a critical moment or something. His rank in Samoa was higher. Anyhow, I just wanted to say a few good words about him because he's awesome.
[3:20pm]
Great news! I just saw my doctor, and I asked her if we could expedite the discharge process. She said that she'll get all the paperwork done tonight, and that I could leave when I choose tomorrow morning. That'll make moving out of my dorm much easier. I could get everything prepared before transport arrives.
On the hair front, it's 98% gone. I just got annoyed at it falling out all over the place, so I spent about 10 minutes just running my hands through it. It fell like snow. There are still some odd spots that wont come out, but, all in all, it looks better than it did. And feels better.
Watching: Austin Powers marathon!
Saturday, August 16, 2008
[8-16-08] ICE, Day Three
[9:21am]
Got a good night's sleep. So nice. It's hard to get to sleep in a strange place, on a strange bed, with random people waking you up at random times of the night. Sleeping pills are necessary to get a full night's sleep, at least for me.
Anyhow, I did the normal routine. Since I have to water-protect my port, I wash my hair in the sink. And, I just could not believe the amount that came out! It looks like I'm going to lose my 10 day bet -- it's going to be like 3 or 4 more days, I believe. I already have bald streaks on the side of my head. Interesting to note where the hair is first lost.
Also, they've been giving me some "magic mouthwash" for some of the sores I have under the tongue. It's not all that bad, just really annoying. Makes saying a few words and eating Cheetos a little painful. So, even though my case is about as mild as it gets, I always take the path of least pain. Apparently, it's due to a low white blood count (though mine is not *that* low).
The downside to the mouthwash, is that it makes me feel a bit queasy for an hour or so afterwards.
[10:45am]
It seems I've been talking so much about events, that I haven't said much on how I am feeling about all this. The cancer, the hospitalization, the hair loss, the chemo, withdrawal from school, scary BMT, moving in with family, and general emotional state. So, I thought I'd say a few words about it. In general, I'm doing absolutely fine with all this. Mood is good. Don't worry, I'll be sure to complain or be pessimistic when the time comes. But, right now, it's all good.
Specifically,
The Cancer: I'm confident that ICE will show enough progress after 2 or 4 cycles to send me to the BMT program. My belief that 2 cycles will get it done is going up with time. I believe the BMT will send me to a remission, with a decent chance of a permanent cure (although I recognize the chance of a relapse or secondary cancer). Also, I am fairly certain that I will have some long-term side-effects maybe 10 years or so down the road. But I am also sure that they can be handled with proper healthy behavior, and medical upkeep.
The BMT: Looking forward to it; it should be interesting. I know it will be totally tough, and I'll be pretty decrepit at times... but, I expect the BMT to the coup de grâce for the evil tumor, and that's exciting. Liz told me not to use the word "burden," so instead I will say: "I want to minimize how much of a workload I am to my family through all of this. I totally recognize that this is tough on everyone, and don't want anyone to feel any obligation whatsoever."
Hair Loss: It sucks, but I'm cool with it. Kinda neat, in a way. But, then again, it's like wearing a hospital gown: an indication to the world that you are sick. I don't like that.
Hospital: Things are great here. I do feel a bit trapped, but with the internet, and movies, and my book, I'm pretty well entertained. Food quality and quantity needs a little boost though. I'm starting to get into this novel, so I look forward to getting totally lost in a fantasy series (thanks, Liz!).
Chemo: Starting to feel the effects of the chemo again; getting flashbacks to the harder parts of the Stanford V. But, still, I'm handling it extremely well. So, I'm not bothered much by it...yet.
Withdrawal from School: I'm more bothered by this, than by anything else. School represents moving forward in life. Not only that, but redemption. Having to withdraw previously, and basically wasting away my potential for three years has really taught me the negative aspects of myself. Doing well, being productive, and generally being positive to those around you are what it's all about. That's why graduation from Berkeley is so profoundly important to me. I know that a bit hard on myself, but that's the plain truth of how I feel.
Staying in school (finishing fall and summer sessions) while undergoing chemo and cancer treatment has been a personal victory for me. I'm proud of that. Having to withdraw due to cancer evens the score. It is a battle. :P
Moving in with family: Same "workload" considerations as before. I'm really looking forward to their company. Just yet another example of how awesome my family is. I mean, I think most people envision long time spent with their family with some amount of dread. But we're a tightly knit group. We're friends; we hang out for no occasion whatsoever. Awesome and special. The downside is that I'll see Liz less frequently.
So, that's the status report. All in all, things are quite good.
[11:40am]
Heh heh. I just ordered more Japanese food. I love spoiling myself... might as well. :)
[12:51pm]
Food Delivery Fiasco: About ten minutes after I ordered the Japanese food, I was sent to have my pulmonary function test. I thought it would be a short affair, but it actually took about 25 minutes. But priorities, you know? A PFT is *way* more important than Japanese food. Anyhow, so about 20 minutes into the PFT, my nurse runs up to the room I am in and says: "Did you order take-out? There's a guy with takeout waiting next to your room." I asked the nurse if he could take some money out of my wallet, left in the room. They nice guy just asked me if I had enough money, then said I could pay him back. Super cool of him. I imagine the delivery guy was quite upset, though. He was tipped well, but I don't believe they'll be delivering to my room again. [Edit: Actually, the nurse thought my tip was too big. Gave him a 3 dollar tip on a 22 dollar meal -- ouch!] :P
On a good note, it looks like I've passed the PFT with flying colors. So, nothing's stopping me from Stanford BMT!
Oh, and when I was sorting through my delivery, a food-service person came in because I forgot to turn in my menu. I was standing next to the window when she asked, "Do you know where the patient is?" I thought that was awesome.
[2:06pm]
Chemo is starting a little late today. Time for a little pre-chemo Ativan nap.
[12:35pm]
Just shaved the last of my facial hair with my fingers. Looks like I was short on the bet by about 8 days -- I've definitely hit the 50% marker. Good night, hair.
Got a good night's sleep. So nice. It's hard to get to sleep in a strange place, on a strange bed, with random people waking you up at random times of the night. Sleeping pills are necessary to get a full night's sleep, at least for me.
Anyhow, I did the normal routine. Since I have to water-protect my port, I wash my hair in the sink. And, I just could not believe the amount that came out! It looks like I'm going to lose my 10 day bet -- it's going to be like 3 or 4 more days, I believe. I already have bald streaks on the side of my head. Interesting to note where the hair is first lost.
Also, they've been giving me some "magic mouthwash" for some of the sores I have under the tongue. It's not all that bad, just really annoying. Makes saying a few words and eating Cheetos a little painful. So, even though my case is about as mild as it gets, I always take the path of least pain. Apparently, it's due to a low white blood count (though mine is not *that* low).
The downside to the mouthwash, is that it makes me feel a bit queasy for an hour or so afterwards.
[10:45am]
It seems I've been talking so much about events, that I haven't said much on how I am feeling about all this. The cancer, the hospitalization, the hair loss, the chemo, withdrawal from school, scary BMT, moving in with family, and general emotional state. So, I thought I'd say a few words about it. In general, I'm doing absolutely fine with all this. Mood is good. Don't worry, I'll be sure to complain or be pessimistic when the time comes. But, right now, it's all good.
Specifically,
The Cancer: I'm confident that ICE will show enough progress after 2 or 4 cycles to send me to the BMT program. My belief that 2 cycles will get it done is going up with time. I believe the BMT will send me to a remission, with a decent chance of a permanent cure (although I recognize the chance of a relapse or secondary cancer). Also, I am fairly certain that I will have some long-term side-effects maybe 10 years or so down the road. But I am also sure that they can be handled with proper healthy behavior, and medical upkeep.
The BMT: Looking forward to it; it should be interesting. I know it will be totally tough, and I'll be pretty decrepit at times... but, I expect the BMT to the coup de grâce for the evil tumor, and that's exciting. Liz told me not to use the word "burden," so instead I will say: "I want to minimize how much of a workload I am to my family through all of this. I totally recognize that this is tough on everyone, and don't want anyone to feel any obligation whatsoever."
Hair Loss: It sucks, but I'm cool with it. Kinda neat, in a way. But, then again, it's like wearing a hospital gown: an indication to the world that you are sick. I don't like that.
Hospital: Things are great here. I do feel a bit trapped, but with the internet, and movies, and my book, I'm pretty well entertained. Food quality and quantity needs a little boost though. I'm starting to get into this novel, so I look forward to getting totally lost in a fantasy series (thanks, Liz!).
Chemo: Starting to feel the effects of the chemo again; getting flashbacks to the harder parts of the Stanford V. But, still, I'm handling it extremely well. So, I'm not bothered much by it...yet.
Withdrawal from School: I'm more bothered by this, than by anything else. School represents moving forward in life. Not only that, but redemption. Having to withdraw previously, and basically wasting away my potential for three years has really taught me the negative aspects of myself. Doing well, being productive, and generally being positive to those around you are what it's all about. That's why graduation from Berkeley is so profoundly important to me. I know that a bit hard on myself, but that's the plain truth of how I feel.
Staying in school (finishing fall and summer sessions) while undergoing chemo and cancer treatment has been a personal victory for me. I'm proud of that. Having to withdraw due to cancer evens the score. It is a battle. :P
Moving in with family: Same "workload" considerations as before. I'm really looking forward to their company. Just yet another example of how awesome my family is. I mean, I think most people envision long time spent with their family with some amount of dread. But we're a tightly knit group. We're friends; we hang out for no occasion whatsoever. Awesome and special. The downside is that I'll see Liz less frequently.
So, that's the status report. All in all, things are quite good.
[11:40am]
Heh heh. I just ordered more Japanese food. I love spoiling myself... might as well. :)
[12:51pm]
Food Delivery Fiasco: About ten minutes after I ordered the Japanese food, I was sent to have my pulmonary function test. I thought it would be a short affair, but it actually took about 25 minutes. But priorities, you know? A PFT is *way* more important than Japanese food. Anyhow, so about 20 minutes into the PFT, my nurse runs up to the room I am in and says: "Did you order take-out? There's a guy with takeout waiting next to your room." I asked the nurse if he could take some money out of my wallet, left in the room. They nice guy just asked me if I had enough money, then said I could pay him back. Super cool of him. I imagine the delivery guy was quite upset, though. He was tipped well, but I don't believe they'll be delivering to my room again. [Edit: Actually, the nurse thought my tip was too big. Gave him a 3 dollar tip on a 22 dollar meal -- ouch!] :P
On a good note, it looks like I've passed the PFT with flying colors. So, nothing's stopping me from Stanford BMT!
Oh, and when I was sorting through my delivery, a food-service person came in because I forgot to turn in my menu. I was standing next to the window when she asked, "Do you know where the patient is?" I thought that was awesome.
[2:06pm]
Chemo is starting a little late today. Time for a little pre-chemo Ativan nap.
[12:35pm]
Just shaved the last of my facial hair with my fingers. Looks like I was short on the bet by about 8 days -- I've definitely hit the 50% marker. Good night, hair.
Friday, August 15, 2008
[8-15-08] ICE, Day Two
[7:17am]
So, I asked for a sleeping pill last night because I just had that "feeling" that sleep was not going to come easily. They obliged and gave me an Ambien. Alas, the pill was not continuous release, so I got 4 hours sleep on the dot. Still wish I could get more sleep...
Barbara crashed over here last night. They got her a lazyboy-type long chair and everything, so she looked comfortable. Of course, without the chair, she would've found a way to sleep in some sort of crazy configuration anyways -- she has a talent for that. Anyways, since I was up early (sorry Barbara!), I finished my morning shower/routine quite early today. While I was washing, I noticed that there was no armpit hair! None, whatsoever! Did that happen overnight? How can that happen so suddenly? I think I retained some of that hair through the Stanford V.
Proudly, I show Barbara -- "Look, no armpit hair!" I say. Perhaps it wasn't on the same level as passing a tough course or getting an "A" on a term paper, but, nevertheless, I thought it was pretty darn cool! See, I never liked that hair -- it's totally useless. If it weren't for all the work required, I'd probably get rid of it. ICE is kicking ass, methinks.
Again, it the whole: "Austin, there's no empirical evidence to support your conclusion." thing. Nevertheless, I'm starting to feel more optimistic about this particular treatment. Perhaps two cycles wont kill the tumor completely, but I'm starting to believe that a 50%-75% reduction is likely. Still, if it goes so well, why not go for four cycles and kill it completely?
As I heard it explained, they don't want to give any unecessary chemo. Not for side-effects and whatnot, but because it seems your body becomes more chemo-resistant as you are exposed to more of it. Since the "conditioning chemo" part of the BMT is the most important, it is better to have your body less resistant to the BIGGER chemo than it is to have a smaller tumor and greater resistance. It does seem like an iffy trade-off, and my doctor better have a good reason to support her choice. Still, it makes some sense. But I always liked the idea of going into a BMT while technically in remission. :P
[2:34pm]
Good news! My Pet-CT scan has been scheduled for the 25th, my Pet-CT follow-up (to decide how to progress) is scheduled for the 26th, and I should get that pulmonary function test (that they forgot to do last time I was hospitalized) some time this weekend. More good news: Chemo started on schedule today, and my counts are slightly up from yesterday (for some reason), so I should be feeling great! However, I'm actually feeling a little worn. And, for the first time, I went a little "Pavlov's Dog" when seeing the chemo enter the room. Light, light, anticipatory nausea. All the anti-emetics soon worked their magic.
I'm gonna go try and shave my little 10-day mustache with my fingers now. Just because. :P
[2:47pm]
Wow, it worked! My mustache is totally gone! Creepy. Poor Gillette's gonna lose some money -- this is baby smooth! Heh, I wonder if it'll confuse any of the nurses. :P
[5:35pm]
*Ugly Side Effect Warning* Embarrassing to admit, but I must report all side effects. Got about a teaspoon blood in the stool, so that's a bit of concern, especially if my platelet counts go too far south. Also, it's apparently important to distinguish that this was accomplished without strain (i.e. constipation). Nurse plans to add a stool softener, and will see if that helps. But they don't look too concerned (I'm certainly a bit spooked!), so that's a relief.
On a more pleasant note, they just started the ifosfamide, and I swear I can taste it! Yum, yum.
[6:50pm]
Guh. Looks like it usually takes a few days with ICE for the nausea to kick in. Last time it was the third day. This time: the second day. For some reason, the meds to combat it haven't been pre-approved for "as needed", so I have to wait until a doctor can be contacted. S'ok though, it's not too bad. But with stuff like this, it's always best to attack early.
So, I asked for a sleeping pill last night because I just had that "feeling" that sleep was not going to come easily. They obliged and gave me an Ambien. Alas, the pill was not continuous release, so I got 4 hours sleep on the dot. Still wish I could get more sleep...
Barbara crashed over here last night. They got her a lazyboy-type long chair and everything, so she looked comfortable. Of course, without the chair, she would've found a way to sleep in some sort of crazy configuration anyways -- she has a talent for that. Anyways, since I was up early (sorry Barbara!), I finished my morning shower/routine quite early today. While I was washing, I noticed that there was no armpit hair! None, whatsoever! Did that happen overnight? How can that happen so suddenly? I think I retained some of that hair through the Stanford V.
Proudly, I show Barbara -- "Look, no armpit hair!" I say. Perhaps it wasn't on the same level as passing a tough course or getting an "A" on a term paper, but, nevertheless, I thought it was pretty darn cool! See, I never liked that hair -- it's totally useless. If it weren't for all the work required, I'd probably get rid of it. ICE is kicking ass, methinks.
Again, it the whole: "Austin, there's no empirical evidence to support your conclusion." thing. Nevertheless, I'm starting to feel more optimistic about this particular treatment. Perhaps two cycles wont kill the tumor completely, but I'm starting to believe that a 50%-75% reduction is likely. Still, if it goes so well, why not go for four cycles and kill it completely?
As I heard it explained, they don't want to give any unecessary chemo. Not for side-effects and whatnot, but because it seems your body becomes more chemo-resistant as you are exposed to more of it. Since the "conditioning chemo" part of the BMT is the most important, it is better to have your body less resistant to the BIGGER chemo than it is to have a smaller tumor and greater resistance. It does seem like an iffy trade-off, and my doctor better have a good reason to support her choice. Still, it makes some sense. But I always liked the idea of going into a BMT while technically in remission. :P
[2:34pm]
Good news! My Pet-CT scan has been scheduled for the 25th, my Pet-CT follow-up (to decide how to progress) is scheduled for the 26th, and I should get that pulmonary function test (that they forgot to do last time I was hospitalized) some time this weekend. More good news: Chemo started on schedule today, and my counts are slightly up from yesterday (for some reason), so I should be feeling great! However, I'm actually feeling a little worn. And, for the first time, I went a little "Pavlov's Dog" when seeing the chemo enter the room. Light, light, anticipatory nausea. All the anti-emetics soon worked their magic.
I'm gonna go try and shave my little 10-day mustache with my fingers now. Just because. :P
[2:47pm]
Wow, it worked! My mustache is totally gone! Creepy. Poor Gillette's gonna lose some money -- this is baby smooth! Heh, I wonder if it'll confuse any of the nurses. :P
[5:35pm]
*Ugly Side Effect Warning* Embarrassing to admit, but I must report all side effects. Got about a teaspoon blood in the stool, so that's a bit of concern, especially if my platelet counts go too far south. Also, it's apparently important to distinguish that this was accomplished without strain (i.e. constipation). Nurse plans to add a stool softener, and will see if that helps. But they don't look too concerned (I'm certainly a bit spooked!), so that's a relief.
On a more pleasant note, they just started the ifosfamide, and I swear I can taste it! Yum, yum.
[6:50pm]
Guh. Looks like it usually takes a few days with ICE for the nausea to kick in. Last time it was the third day. This time: the second day. For some reason, the meds to combat it haven't been pre-approved for "as needed", so I have to wait until a doctor can be contacted. S'ok though, it's not too bad. But with stuff like this, it's always best to attack early.
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.
Tuesday, August 12, 2008
[8-12-08] Troubleshooting Life
[6:06am]
A little under four hours until the final is due... the pressure is on. Can he handle it? The judges are in-conference... they seem to indicate that...yes, yes he can indeed handle the pressure. The Swiss judge is citing a July term paper in which the protagonist chose to write on his own blog as a method of last-minute procrastination. It looks like the same strategy is in play here... how will it turn out?
[8:00am]
Mmmm, just had a three-egg breakfast with potatoes and italian sausage. Large mocha for added caffeine. Yummy. Now what was I doing?
[9:28am]
Just finished term paper! Wahoo! If anyone is curious about space-based solar power, it will be available at: here for a day or so.
[12:10pm]
Bah! One hurdle ends; another begins... I just got a call from Dr. Irwin's office: One of the nurses (not Becky) just wanted to confirm a pet-CT scan for the 19th! That's too early! My ICE treatment is scheduled to go from tomorrow until Sunday -- more time needs to pass before a scan can be completed... Or *is* my ICE treatment scheduled at all?
Just to be sure, I ask the nurse... "Oh, your treatment is scheduled for the 26th." WTF?!?!?! I'd like it to be known that I have mercilessly *insisted* to everyone that will listen that my ICE treatment starts tomorrow. Each time, both doctors and nurses have agreed. So again, wtf is going on? Grrr...
*sigh* I really wanted to just come home and relax... I finished the term paper, the class is over: I should feel good! Now everything is up in the air. They give me control over one aspect of my treatment: 2 week, or 3 week intervals between ICE. Determinedly, I choose the 2 week interval, thus convincing myself (through cognitive dissonance) that the increased neutropenic risks associated with a 2 week interval is worth the added blow to my evil tumor. In fact, I could delude myself into thinking that treatment occurring just 1 week earlier would cause a net reduction between 50 and 75% (because there is no time allowed to re-grow)! In that case, the ICE treatment has yielded sufficient results and I can proceed with a bone marrow transplant one month earlier! Perhaps that one month will save my life!
Oh wait.. They accidentally scheduled me for ICE a week from now, instead of tomorrow. I see. Scratch all that then. Grr.
[1:38pm]
Ahhhh, relief... Please excuse my momentary psychosis. All is right in the world. Becky has confirmed a 9:00-9:30am arrival time to summit hospital for ICE treatment for tomorrow, the 13th. There was some confusion about a mysteriously early pet-CT scan. It was not Becky's fault, and she is looking into it. Good.. Good. Pulse returning to normal...
[4:12pm]
I'm off to go buy a nice robe for tomorrow. Down to hospital gowns! Maybe I'll be able to find those fuzzy Odie slippers too. :P
[5:46pm]
Can you believe it?? Bed Bath and Beyond refuses to sell bathrobes for men! I guess Hugh Hefner has gone out of vogue. Oh well, I'm probably more comfy in pants anyhow. Truthfully, I'm just trying to find things to occupy my time until Christmas morning.
A little under four hours until the final is due... the pressure is on. Can he handle it? The judges are in-conference... they seem to indicate that...yes, yes he can indeed handle the pressure. The Swiss judge is citing a July term paper in which the protagonist chose to write on his own blog as a method of last-minute procrastination. It looks like the same strategy is in play here... how will it turn out?
[8:00am]
Mmmm, just had a three-egg breakfast with potatoes and italian sausage. Large mocha for added caffeine. Yummy. Now what was I doing?
[9:28am]
Just finished term paper! Wahoo! If anyone is curious about space-based solar power, it will be available at: here for a day or so.
[12:10pm]
Bah! One hurdle ends; another begins... I just got a call from Dr. Irwin's office: One of the nurses (not Becky) just wanted to confirm a pet-CT scan for the 19th! That's too early! My ICE treatment is scheduled to go from tomorrow until Sunday -- more time needs to pass before a scan can be completed... Or *is* my ICE treatment scheduled at all?
Just to be sure, I ask the nurse... "Oh, your treatment is scheduled for the 26th." WTF?!?!?! I'd like it to be known that I have mercilessly *insisted* to everyone that will listen that my ICE treatment starts tomorrow. Each time, both doctors and nurses have agreed. So again, wtf is going on? Grrr...
*sigh* I really wanted to just come home and relax... I finished the term paper, the class is over: I should feel good! Now everything is up in the air. They give me control over one aspect of my treatment: 2 week, or 3 week intervals between ICE. Determinedly, I choose the 2 week interval, thus convincing myself (through cognitive dissonance) that the increased neutropenic risks associated with a 2 week interval is worth the added blow to my evil tumor. In fact, I could delude myself into thinking that treatment occurring just 1 week earlier would cause a net reduction between 50 and 75% (because there is no time allowed to re-grow)! In that case, the ICE treatment has yielded sufficient results and I can proceed with a bone marrow transplant one month earlier! Perhaps that one month will save my life!
Oh wait.. They accidentally scheduled me for ICE a week from now, instead of tomorrow. I see. Scratch all that then. Grr.
[1:38pm]
Ahhhh, relief... Please excuse my momentary psychosis. All is right in the world. Becky has confirmed a 9:00-9:30am arrival time to summit hospital for ICE treatment for tomorrow, the 13th. There was some confusion about a mysteriously early pet-CT scan. It was not Becky's fault, and she is looking into it. Good.. Good. Pulse returning to normal...
[4:12pm]
I'm off to go buy a nice robe for tomorrow. Down to hospital gowns! Maybe I'll be able to find those fuzzy Odie slippers too. :P
[5:46pm]
Can you believe it?? Bed Bath and Beyond refuses to sell bathrobes for men! I guess Hugh Hefner has gone out of vogue. Oh well, I'm probably more comfy in pants anyhow. Truthfully, I'm just trying to find things to occupy my time until Christmas morning.
Wednesday, August 6, 2008
[8-06-08] Term Paper and Appt. Results
[11:53am]
Well, I just received my term paper back. I got somewhere between an A- and a B+, whatever that means. For some reason, every grade I have received has been some sort of hybrid of some kind; no point scale.
Anyhow, what caught my attention was what was written in the margin below the grade... It said, "Good Work, Mr. A., no doubt under trying circumstances -- to say the least."
It made me smile to read that. That was better than the grade, you know?
[4:49pm]
After getting my labs done, I spoke with Dr. Cecchi and got the plans rolling. My labs were good: RBC falling very slowly, while the WBC was up at 13.7 (due to Neulasta shot). In other words, I was good to go.
They're scheduling me for more inpatient ICE at summit (on the 13th), a pet-CT scan to verify ICE is working (around the 20th), and a follow-up oncology visit to discuss results (before 26th). The thought being, if I have clean scans after the second cycle(probably not likely), then I can skip the last two cycles of ICE and go straight to the bone marrow transplant part. If, after the next cycle of ICE, the pet-CT scan shows significant reduction (which I think is most likely), then we continue with two more cycles and finish with the BMT. Lastly, if the scans indicate little or no progress, then that's no good -- from what I read, response to ICE is necessary to indicate the BMT procedure. In other words, I'd have to look for different options. But that's getting ahead of things. I'm just hoping the next scans show a reduction.
So, that's the plan so far!
Well, I just received my term paper back. I got somewhere between an A- and a B+, whatever that means. For some reason, every grade I have received has been some sort of hybrid of some kind; no point scale.
Anyhow, what caught my attention was what was written in the margin below the grade... It said, "Good Work, Mr. A., no doubt under trying circumstances -- to say the least."
It made me smile to read that. That was better than the grade, you know?
[4:49pm]
After getting my labs done, I spoke with Dr. Cecchi and got the plans rolling. My labs were good: RBC falling very slowly, while the WBC was up at 13.7 (due to Neulasta shot). In other words, I was good to go.
They're scheduling me for more inpatient ICE at summit (on the 13th), a pet-CT scan to verify ICE is working (around the 20th), and a follow-up oncology visit to discuss results (before 26th). The thought being, if I have clean scans after the second cycle(probably not likely), then I can skip the last two cycles of ICE and go straight to the bone marrow transplant part. If, after the next cycle of ICE, the pet-CT scan shows significant reduction (which I think is most likely), then we continue with two more cycles and finish with the BMT. Lastly, if the scans indicate little or no progress, then that's no good -- from what I read, response to ICE is necessary to indicate the BMT procedure. In other words, I'd have to look for different options. But that's getting ahead of things. I'm just hoping the next scans show a reduction.
So, that's the plan so far!
Tuesday, August 5, 2008
[8-05-08] The mythical "chemo-brain"
[6:34pm]
Some thoughts on this so-called chemo-brain. Is it a myth? My original belief was that there was little empirical evidence to support it.
Guess that's changed.
D'uh. So, next time I leave my xbox 360 in the refrigerator, you'll know why! (Unless I'm trying to resolve heating issues, that is). Anyhow, perhaps it would be fun to do a study of my own... Maybe Barbara can play me chess a bunch while I'm in the hospital and benchmark my chess-playing ability. :P
::mumble mumble:: stupiddroolalwaysgettingonmyspacebar.
Some thoughts on this so-called chemo-brain. Is it a myth? My original belief was that there was little empirical evidence to support it.
Guess that's changed.
Japanese researchers used magnetic resonance imaging to show that cancer drugs can cause temporary shrinkage in brain structures involved in cognition and awareness (Cancer, Jan. 1, 2007). The brain imaging was performed on three groups of women: breast cancer survivors who had received chemotherapy, breast cancer survivors who had not undergone chemotherapy, and a healthy control group. Compared to the other women, the chemotherapy recipients had less white matter (information-transmitting cells) and gray matter (information-processing cells) in regions of the brain involved in attention, planning, judgment, remembering, and self-awareness. Shrinkage in these areas correlated with generally lower scores on measures of attention, concentration, and visual memory.In addition, scientists at the University of Rochester Medical Center Medical Center, found that one of the cancer drugs that I'm taking, cisplatin, is more toxic to healthy brain cells than to cancer cells (Journal of Biology, Nov. 30, 2006) — at least in laboratory cell cultures:
In the lab setting, these drugs killed 70%–100% of brain cells — but only 40%–80% of cancer cells. Animal studies showed that such effects lasted for at least six weeks after treatment. The drugs harmed various types of cells, including neurons that contribute to signal transmission in the brain.
The University of Rochester team speculates that these cancer drugs may block new cell formation in the hippocampus, a brain structure essential to memory and learning. The researchers stress that no one should avoid chemotherapy because of these preliminary results. But they suggest that their findings offer a physiological explanation for chemobrain and could eventually lead to ways of protecting the brain during chemotherapy.
D'uh. So, next time I leave my xbox 360 in the refrigerator, you'll know why! (Unless I'm trying to resolve heating issues, that is). Anyhow, perhaps it would be fun to do a study of my own... Maybe Barbara can play me chess a bunch while I'm in the hospital and benchmark my chess-playing ability. :P
::mumble mumble:: stupiddroolalwaysgettingonmyspacebar.
[8-05-08] Wednesday Oncology Appt.
[8:59am]
Good news! I have an appointment with Dr. Cecchi on Wednesday at 2:45pm (labs) and 3:30pm (doc). So, my evil plans for more ICE treatment on the 13th are still in-place. Mwa ha ha. Er, ok, I'm still half asleep.
Becky had me agree to a quick lab check-up on Monday the 11th before re-admit.
On a side note, this whole "get the ICE treatment done every two weeks" thing makes me feel like I have some power in all of this, ya know? Like I'm cheating the system. The secret they don't tell you in school: cheaters win. :P
Mwa, oh yeah. Time to turn in my completely terri...I mean, my complete term paper!
[3:26pm]
More good news! After consulting with my school's social services person, we have outlined a plan that will enable me to have school insurance for the Fall and get a tuition refund! The downside to this is that I will be ineligible for any financial aid whatsoever for Fall 09. Still, things are looking good today!
On the school front: I talked to my professor, and got everything worked out. It was a bit scary because I half expected him to say, "Well, you might as well just drop the class..." But he worked with me, and outlined a pretty rigorous schedule (since next Tuesday will be my final day of class). Final Presentation: This Thursday. Final Paper: Next Tuesday. So at least I should be busy this next week!
Currently Eating: A giant heap of blackberry frozen yogurt.
Good news! I have an appointment with Dr. Cecchi on Wednesday at 2:45pm (labs) and 3:30pm (doc). So, my evil plans for more ICE treatment on the 13th are still in-place. Mwa ha ha. Er, ok, I'm still half asleep.
Becky had me agree to a quick lab check-up on Monday the 11th before re-admit.
On a side note, this whole "get the ICE treatment done every two weeks" thing makes me feel like I have some power in all of this, ya know? Like I'm cheating the system. The secret they don't tell you in school: cheaters win. :P
Mwa, oh yeah. Time to turn in my completely terri...I mean, my complete term paper!
[3:26pm]
More good news! After consulting with my school's social services person, we have outlined a plan that will enable me to have school insurance for the Fall and get a tuition refund! The downside to this is that I will be ineligible for any financial aid whatsoever for Fall 09. Still, things are looking good today!
On the school front: I talked to my professor, and got everything worked out. It was a bit scary because I half expected him to say, "Well, you might as well just drop the class..." But he worked with me, and outlined a pretty rigorous schedule (since next Tuesday will be my final day of class). Final Presentation: This Thursday. Final Paper: Next Tuesday. So at least I should be busy this next week!
Currently Eating: A giant heap of blackberry frozen yogurt.
Subscribe to:
Posts (Atom)
