[Counts]
WBC:10.3
HCT:31.8
PLT:58,000
The counts section ends here, as I'm pretty sure they'll all be good from now on.
[4:09pm]
My mom just said, "Well, this part is almost over." She said, "... this part is almost over." This nightmarish journey has an end in sight: a different nightmarish journey.
Ok, maybe I'm being a bit melodramatic -- the BMT hospitalization part is by far the most difficult. But I've been focusing so much on that aspect that I am so ready for it all to be done! Now I have to face the post-BMT Stanford infusion period, then the radiation period (hopefully in Berkeley area), then the life-long routine cancer testing phase (perhaps the most daunting of them all).
It seems that the most pernicious aspect of cancer is the fact that it is not finite. Diabetes may be a life-threatening life-long disease, but everything will work out fine if it's treatment is seriously followed. With cancer, on the other hand, one has to be subjected to harsh treatments with unknown outcomes...all you can do is suffer through it and pray to whatever you find holy. Even if the outcome is favorable, and the cancer is cured, it can always come back -- it's ghost is always there to haunt you. Which would you prefer? A pill to take to keep your cancer permanently in remission? Or a chemotherapeutic agent to attempt to destroy the cancer, but can cause severe long term side effects, unhinge your life, and, of course, can return at any time. That's what I mean by not finite: there is no end.
Taken to the other extreme, if one were to have a bullet shot through their head, then that would be it: a finite death. And that is, without question, what all cancer warriors are fighting against. But is a bullet through the head more pernicious than a few years fighting a losing battle against a cancer that has you so battle-worn that you are stripped of all identity and converted into this wounded animal? A wounded animal that no longer has the energy for witty banter with the nurses; A wounded animal that does nothing but poop, vomit, eat (if through a tube), and drink (again, if through a tube)... and all that is of concern to those around the animal is it's input(what comes in) and output (what goes out). Seems that the bullet has a greater respect for life with a smaller amount of suffering.
So, this part is almost over. They have transferred me into a double room, which is a good sign for those looking to get out of here -- it means your counts are good enough that severe precautions are not necessary.
As luck would have it, they transferred me into a room with a guy who was having his transplant today! I was glad for the guy, until I encountered that overwhelming stem-cell stench... the stench of poorly fried shellfish that had been left out in the sun for a few days.
The funny part is that everyone was fine with it, except for me -- I nearly vomited 7 or 8 times. I requested some Ativan and air freshener. When they arrived, I was spraying air freshner into my face as I was getting the Ativan -- it worked, for a time.
Fortunately, the smell goes away with time. Plus, my roommate just got discharged (a day after transplant! Why is mine so long?), so my mom and I stole his window seat. It's much nicer here.
Truthfully, I'm getting a little depressed in this hospital. I've just been here too long; been caged up to an IV for too long -- I want my freedom; I want to go home. Been trying to sleep away the days, but that never works. All you can do is make sure you eat enough, drink enough (3L), and do their little breathing exercise thingy enough to get discharged. They say that there's a chance I'll get discharged on Wednesday, but I don't really believe that... so, it looks like Thursday. Two whole days from now.
Showing posts with label chemo. Show all posts
Showing posts with label chemo. Show all posts
Tuesday, November 18, 2008
Thursday, October 30, 2008
[10-30-08] VP-16 (Day -4)
[10:50am]
I've forgotten to mention some of the more important side-effects since I've been admitted here... As always, for the sake of accuracy, I will go into further detail.
Firstly, I haven't really been able to eat anything. Surprisingly, this distresses doctors far less than one would think. Sure, I can eat a few bites of Jello here and there, milks, or a few applesauces, but nothing really substantial. The doctor's have mentioned TPN (which is basically IV nutrients), but they seem to think that it is not necessary as long as I eat something.
Perhaps as a corollary to the first, I have been sans-poop for the past 3 days. This, on the other hand, has the doctors quite concerned. They are giving me lots of pills for this: senna, colace, laxatives, etc... Nada.
The nurse told me that it was especially important to have a bowel movement today. So, I was trying to force myself to eat some actual food this morning... thinking high intake equals high output... or some such nonsense. After eating the obligatory Jello and applesauce, I began a daring move to the eggs and bacon. It was a valiant effort, but I just couldn't swallow it. Next, I thought to myself how I was strangely able to eat a bag of Cheetos last night. So, I went for the Cheetos.
Cheetos and Jello don't mix. I quickly hollered for the Ativan, but I was too late... I vomited what little food I had. *sigh*
The nurse recommended I try some ensure, so I'll try that next.
The other side effect has been fevers! I've been having daily and nightly fevers since I have arrived here. Sometime I just coast at 100.4, and sometimes I spike higher. Even if the fevers are not worthy for intervention, they are quite annoying! They give me such a headache, and I can't take any Tylenol because they want me to get a high enough fever for a blood culture... or something (They give you Tylenol if it goes high enough, of course).
The fevers also give me this pain behind the eyes, and make it quite hard to focus on anything.
Anyhow, it's all a bunch of mini-battles. Now onto the larger one: The VP-16! (Update Later)
I've forgotten to mention some of the more important side-effects since I've been admitted here... As always, for the sake of accuracy, I will go into further detail.
Firstly, I haven't really been able to eat anything. Surprisingly, this distresses doctors far less than one would think. Sure, I can eat a few bites of Jello here and there, milks, or a few applesauces, but nothing really substantial. The doctor's have mentioned TPN (which is basically IV nutrients), but they seem to think that it is not necessary as long as I eat something.
Perhaps as a corollary to the first, I have been sans-poop for the past 3 days. This, on the other hand, has the doctors quite concerned. They are giving me lots of pills for this: senna, colace, laxatives, etc... Nada.
The nurse told me that it was especially important to have a bowel movement today. So, I was trying to force myself to eat some actual food this morning... thinking high intake equals high output... or some such nonsense. After eating the obligatory Jello and applesauce, I began a daring move to the eggs and bacon. It was a valiant effort, but I just couldn't swallow it. Next, I thought to myself how I was strangely able to eat a bag of Cheetos last night. So, I went for the Cheetos.
Cheetos and Jello don't mix. I quickly hollered for the Ativan, but I was too late... I vomited what little food I had. *sigh*
The nurse recommended I try some ensure, so I'll try that next.
The other side effect has been fevers! I've been having daily and nightly fevers since I have arrived here. Sometime I just coast at 100.4, and sometimes I spike higher. Even if the fevers are not worthy for intervention, they are quite annoying! They give me such a headache, and I can't take any Tylenol because they want me to get a high enough fever for a blood culture... or something (They give you Tylenol if it goes high enough, of course).
The fevers also give me this pain behind the eyes, and make it quite hard to focus on anything.
Anyhow, it's all a bunch of mini-battles. Now onto the larger one: The VP-16! (Update Later)
Tuesday, October 28, 2008
[10-28-08] BCNU (Day -6)
[10:57pm]
Last night I got two blood transfusions, so I have a bit more energy today. Apparently, my hematocrit dropped two points (to 25) in only one day! These drugs are impressive!
So, using my newfound energy, I set up my x-box, my computer, and various other things, and got situated in my room. They were supposed to move me into a single room, but instead they decided to keep me in here until my white blood cells start to plummet.
Anyhow, I think my stomach has transcended to a perpetual state of ickiness. Also, I'm starting to get pain in my mouth (right behind my tongue) whenever I talk. Soon I may not be able to talk, or take my pills. I mean, the purpose of the psychiatric consult was to determine which pills I will be able to take in liquid form, and substitutes for those I cannot.
Scary, huh?
And now I've been told that I should be starting BCNU at 1:00pm. The doctor said, "You will not like it -- patients in your situation usually think it's the worst." He then told me how the drug causes severe agitation because it can cross the blood-brain barrier, due to the fact that it is delivered in an alcohol solution. Patients have restless legs, twitches, and bad jaw pain (clenching?) -- hence the Haldol.
A little under two hours before I am subjected to that; I am spooked.
But still, in Austin fashion -- BRING IT!
[8:10pm]
Bah, the BCNU was baby food -- it was Gerber, my friends. Call it coincidence or not, but after the BCNU, my persistent nausea went away. Plus, I ate a good deal of my lunch! Who knows? Maybe it's waiting patiently for it to attack me unawares.
When they administered the Haldol and Benadryl for the BCNU, I quickly found myself quite sedated. The nurse was describing the effects of the drug, but I had a hard time grasping all the details. In addition, when I tried to speak, I think my voice came out somewhat strained or slurred; it was difficult to talk. Then, I fell asleep.
Occasionally, they would wake me up for vitals and whatnot, but I immediately fell asleep again. In fact, I pretty much slept through the whole thing. Not bad!
So I didn't get all irritated and agitated, and I didn't snap at anyone (including my mom) -- you couldn't really picture me snapping at people, could you?
Some time later, I felt like eating the rest of my dinner: a feast consisting of pears, 3 jellos, 2 applesauces, and a dinner roll. For the first time since Friday night, I ate most of it! Tomorrow, I will try a light meal and see how it goes.
The doctor was talking about putting me on a nutrition IV, but I think I'd like to avoid that if possible. Though I basically haven't eaten for a couple of days -- maybe they draw the line at 3 days. But, the way I'm feeling right now, I should be eating bacon by tomorrow -- perhaps even BACON!
So it seems that the BCNU is a cakewalk. Also, that the transfusions are very useful. My energy is somewhat back; my nausea is gone. So... sweet! This SCT may be easier than I think.
All I have to worry about it my mom tripping over my IV line again. Yes, the pole almost came crashing down, and a pump module with it's IV bag were ripped to the floor. Fortunately, nothing was "pulled" on my end.
To mom's credit, the nurse almost did it as well. But to the nurse's credit, I was somewhat fumbling with the line as well.
Right now, I've got the xbox 360 set up. So, back to the games! Wahoo!
Last night I got two blood transfusions, so I have a bit more energy today. Apparently, my hematocrit dropped two points (to 25) in only one day! These drugs are impressive!
So, using my newfound energy, I set up my x-box, my computer, and various other things, and got situated in my room. They were supposed to move me into a single room, but instead they decided to keep me in here until my white blood cells start to plummet.
Anyhow, I think my stomach has transcended to a perpetual state of ickiness. Also, I'm starting to get pain in my mouth (right behind my tongue) whenever I talk. Soon I may not be able to talk, or take my pills. I mean, the purpose of the psychiatric consult was to determine which pills I will be able to take in liquid form, and substitutes for those I cannot.
Scary, huh?
And now I've been told that I should be starting BCNU at 1:00pm. The doctor said, "You will not like it -- patients in your situation usually think it's the worst." He then told me how the drug causes severe agitation because it can cross the blood-brain barrier, due to the fact that it is delivered in an alcohol solution. Patients have restless legs, twitches, and bad jaw pain (clenching?) -- hence the Haldol.
A little under two hours before I am subjected to that; I am spooked.
But still, in Austin fashion -- BRING IT!
[8:10pm]
Bah, the BCNU was baby food -- it was Gerber, my friends. Call it coincidence or not, but after the BCNU, my persistent nausea went away. Plus, I ate a good deal of my lunch! Who knows? Maybe it's waiting patiently for it to attack me unawares.
When they administered the Haldol and Benadryl for the BCNU, I quickly found myself quite sedated. The nurse was describing the effects of the drug, but I had a hard time grasping all the details. In addition, when I tried to speak, I think my voice came out somewhat strained or slurred; it was difficult to talk. Then, I fell asleep.
Occasionally, they would wake me up for vitals and whatnot, but I immediately fell asleep again. In fact, I pretty much slept through the whole thing. Not bad!
So I didn't get all irritated and agitated, and I didn't snap at anyone (including my mom) -- you couldn't really picture me snapping at people, could you?
Some time later, I felt like eating the rest of my dinner: a feast consisting of pears, 3 jellos, 2 applesauces, and a dinner roll. For the first time since Friday night, I ate most of it! Tomorrow, I will try a light meal and see how it goes.
The doctor was talking about putting me on a nutrition IV, but I think I'd like to avoid that if possible. Though I basically haven't eaten for a couple of days -- maybe they draw the line at 3 days. But, the way I'm feeling right now, I should be eating bacon by tomorrow -- perhaps even BACON!
So it seems that the BCNU is a cakewalk. Also, that the transfusions are very useful. My energy is somewhat back; my nausea is gone. So... sweet! This SCT may be easier than I think.
All I have to worry about it my mom tripping over my IV line again. Yes, the pole almost came crashing down, and a pump module with it's IV bag were ripped to the floor. Fortunately, nothing was "pulled" on my end.
To mom's credit, the nurse almost did it as well. But to the nurse's credit, I was somewhat fumbling with the line as well.
Right now, I've got the xbox 360 set up. So, back to the games! Wahoo!
Tuesday, October 21, 2008
[10-21-08] It starts...
[4:09pm]
The BMT process has officially started.
Today, I received a dose of Gemcitabine and Vinorelbine (Navelbine). Unlike all the other chemotherapy drugs I will take, these two are the only ones which will be a "normal" dose... I believe Gemcitabine is used for pancreatic cancer, and I have received a comparable dose. Because of this, I expected these drugs to be without side-effects...
I was slightly wrong -- after an hour or so, I got that familiar "delicate stomach" feeling and a headache. The headache may be due to exertion, however -- I can tell that my red counts have been on a slow decline. (A few days ago, I had my counts. I was better than I was pre-transfusion, but still moderately anemic.)
It was nice that the infusions together were under an hour.
Also, I was equipped with a continuous mini-IV pump. Heperin is currently flowing into my catheter at a measly 0.5ml per hour! This is to prevent those pesky blood clots. I have it attached like a fanny pack -- the nurse mentioned holding it like a purse, but what sane male would do that? It's not as bad as I thought; it is pretty portable (only 100ml bag) and maintenance-free.
In fact, the nurse spent quite some time explaining how to control the pump in case of any trouble -- it is very intuitive. She repeated her instructions several times -- I guess some cancer patients are so zonked out that it is necessary. I guess I will be one of them soon enough.
Since today marked the first day of my BMT, many nurses expressed their certainty of a cure or an easy transplant. I found such optimism a little bit disturbing. Firstly, both assertions of certainty are not statistically accurate -- I'd say you need 98% or greater to use the terms "will be" or "certain." Otherwise, I'd recommend "believe," "feel," or "hope."
Secondly, it makes sense that the nurses have a solid grasp of cure rates and problem-free BMTs. This being true, then it seems that the nurses were willfully expressing a false belief of certainty in a positive outcome. I'm sure they believe that I will be cured or do fine, but I doubt their certainty.
So, why were they doing this? Is saying stuff like "you will be fine" the polite thing to do? Will reality be changed by denying uncertainty? OF course not. If anything, I believe that recognizing potential obstacles and challenges will help us deal with the future. I want to be told to expect a "shitty time" and to be reminded that a remission post-BMT is probable, but not certain. I don't want superstition to be a part of my treatment.
Don't get me wrong -- I'm not denying the existence of self-fulfilling prophecies. For example, I believe that going into a test with a positive attitude will yield higher scores. But a positive attitude strengthening the good cells and making the bad cells commit suicide... nah.
Perhaps my lack of faith is a character flaw... but I don't feel that way. I have thought a lot about my spirituality and beliefs through all of this; the prospect of death can do that. Oddly enough, I find my lack of spirituality/faith a source of strength. I am comforted in a grounded and absolute reality, and I find the prospect of nonexistence... peaceful. It certainly didn't bug me before I was born. :P
So, although I may not be certain of the outcome... I am absolutely certain that everything will work out fine in the end. Strange, huh? An absence of faith is a sort of faith in itself.
Anyhow, for good measure, I should probably counter all that philosophy with something superficial... hmm... Oh, I can't have beer anymore! Noooooooooooooooooooooooo... I'm gonna miss that. When I come out of this, I'll probably be a lightweight with my alcohol -- happy with just a six-pack. You betcha!~
The BMT process has officially started.
Today, I received a dose of Gemcitabine and Vinorelbine (Navelbine). Unlike all the other chemotherapy drugs I will take, these two are the only ones which will be a "normal" dose... I believe Gemcitabine is used for pancreatic cancer, and I have received a comparable dose. Because of this, I expected these drugs to be without side-effects...
I was slightly wrong -- after an hour or so, I got that familiar "delicate stomach" feeling and a headache. The headache may be due to exertion, however -- I can tell that my red counts have been on a slow decline. (A few days ago, I had my counts. I was better than I was pre-transfusion, but still moderately anemic.)
It was nice that the infusions together were under an hour.
Also, I was equipped with a continuous mini-IV pump. Heperin is currently flowing into my catheter at a measly 0.5ml per hour! This is to prevent those pesky blood clots. I have it attached like a fanny pack -- the nurse mentioned holding it like a purse, but what sane male would do that? It's not as bad as I thought; it is pretty portable (only 100ml bag) and maintenance-free.
In fact, the nurse spent quite some time explaining how to control the pump in case of any trouble -- it is very intuitive. She repeated her instructions several times -- I guess some cancer patients are so zonked out that it is necessary. I guess I will be one of them soon enough.
Since today marked the first day of my BMT, many nurses expressed their certainty of a cure or an easy transplant. I found such optimism a little bit disturbing. Firstly, both assertions of certainty are not statistically accurate -- I'd say you need 98% or greater to use the terms "will be" or "certain." Otherwise, I'd recommend "believe," "feel," or "hope."
Secondly, it makes sense that the nurses have a solid grasp of cure rates and problem-free BMTs. This being true, then it seems that the nurses were willfully expressing a false belief of certainty in a positive outcome. I'm sure they believe that I will be cured or do fine, but I doubt their certainty.
So, why were they doing this? Is saying stuff like "you will be fine" the polite thing to do? Will reality be changed by denying uncertainty? OF course not. If anything, I believe that recognizing potential obstacles and challenges will help us deal with the future. I want to be told to expect a "shitty time" and to be reminded that a remission post-BMT is probable, but not certain. I don't want superstition to be a part of my treatment.
Don't get me wrong -- I'm not denying the existence of self-fulfilling prophecies. For example, I believe that going into a test with a positive attitude will yield higher scores. But a positive attitude strengthening the good cells and making the bad cells commit suicide... nah.
Perhaps my lack of faith is a character flaw... but I don't feel that way. I have thought a lot about my spirituality and beliefs through all of this; the prospect of death can do that. Oddly enough, I find my lack of spirituality/faith a source of strength. I am comforted in a grounded and absolute reality, and I find the prospect of nonexistence... peaceful. It certainly didn't bug me before I was born. :P
So, although I may not be certain of the outcome... I am absolutely certain that everything will work out fine in the end. Strange, huh? An absence of faith is a sort of faith in itself.
Anyhow, for good measure, I should probably counter all that philosophy with something superficial... hmm... Oh, I can't have beer anymore! Noooooooooooooooooooooooo... I'm gonna miss that. When I come out of this, I'll probably be a lightweight with my alcohol -- happy with just a six-pack. You betcha!~
Friday, October 17, 2008
[10-17-08] E-Day
[7:51pm]
Oct 17th... an historical day for anyone who has lived in the bay area. More specifically, around 5pm on Oct 17th, 1989. Can you guess it? Yup, it's Earthquake Day! Today is the day of the devastating Loma Prieta Earthquake, not to be confused with the San Fransisco Earthquake (in 1906). This 1989 earthquake has an epicenter in Santa Cruz County, baby!
As you can tell, I'm proud to have been in it. Does that seem strange? I mean, it's not like surviving the 1989 earthquake took any talent or skill. Nevertheless, it's a part of my history... and despite the devastation involved, I look upon the experience fondly. In fact, I thought it was cool at the time; the shaking was fun.
Anyway...
I had an appointment at Stanford today. I felt that I had enough stamina to ride my motorcycle there and back. I did, but that doesn't mean I'm not beat! What a trek! Especially with the traffic. *ahem* I digress...
Basically, this appointment was to overview the next phase of the BMT process and obtain the final doctor's "go ahead."
My doctor said everything looked fine, and that I was ready to start the chemo on Tuesday! I am still anemic (HCT 27, HGB 10), but my white counts were good. So, yeah, the next phase is a go. It was a very short appointment.
Then, my scheduling nurse came in and went over the some treatment details and the side-effects associated with very high doses with these drugs.
The first two drugs, G and N, are fairly innocuous compared with the other drugs. I should expect nausea/vomiting on a level comparable with ICE or Stanford V -- no problem. The big downside is that they are very concerned with mini blot clots perforating my liver. Strange, huh? So, to prevent liver damage, I have to be on a continuous IV of heparin over the next week (starting Tuesday). So I have to carry a little bag and pump wherever I go. Bah, something more to get in the way of one of my favorite things: starting the day off with a refreshing hot shower. How am I gonna manage that? I already have to spend quite some time waterproofing my catheter dressing each morning.
Next comes the BCNU (Carmustine), which is administered when I am admitted. From what I gather, this is the most hardcore of the drugs that I will receive. Other than the typical side-effects, this one has some strange effects that will occur for a short duration while it is being administered.
My nurse says to expect a severe headache for up to 24 hours... OK, no problem. Then she tells me to expect to be extremely irritated while the drug is being delivered. I'm doubtful at first: I've heard about chemo causing this sort of thing before, but never really experienced it myself. But, apparently, the nurses go as far as recommending that loved ones leave the room. My nurse has personally heard shouting, cursing, and general meanness from people who have received this first-hand.
Still, I can't imagine getting all angry just because of a drug. But then, get this: she tells me that they prescribe a dose of Haldol to patients before they receive BCNU. Haldol! The extremely hardcore sedative anti-psychotic! How's that for strange! This is the stuff they give to patients so unruly that they have to be doped up so that they don't hurt themselves or others.
Ok, maybe I can see myself a little irritated then. I mean, if they're giving you Haldol for cryin' out loud, it must be pretty bad.
Then, the next two drugs are VP-16 and Cytoxan. Same chemicals, but at ridiculous doses this time. Well, the Cytoxan I will receive will only be at a slightly higher dose than it was for my mobilization, but that was a ridiculous dose anyways.
Other that more severe versions of the typical side-effects, I can expect (read: very common) a large amount of skin irritation and mouth sores. The skin problems can get so severe it peels off (and is painful), and the mouth sores can get so bad I may not be able to eat. Both usually requires some amount of pain medication, ranging from moderate, to the IV morphine clicker.
As for the transplant itself, it is pretty uneventful. A 5 minute IV delivery of my old baby stem cells. I could feel a cold rush, some chest pain, a little anxiety, and smell like garlic (preservative) for a while.
And that's that! Sounds like fun, eh? :P
Oct 17th... an historical day for anyone who has lived in the bay area. More specifically, around 5pm on Oct 17th, 1989. Can you guess it? Yup, it's Earthquake Day! Today is the day of the devastating Loma Prieta Earthquake, not to be confused with the San Fransisco Earthquake (in 1906). This 1989 earthquake has an epicenter in Santa Cruz County, baby!
As you can tell, I'm proud to have been in it. Does that seem strange? I mean, it's not like surviving the 1989 earthquake took any talent or skill. Nevertheless, it's a part of my history... and despite the devastation involved, I look upon the experience fondly. In fact, I thought it was cool at the time; the shaking was fun.
Anyway...
I had an appointment at Stanford today. I felt that I had enough stamina to ride my motorcycle there and back. I did, but that doesn't mean I'm not beat! What a trek! Especially with the traffic. *ahem* I digress...
Basically, this appointment was to overview the next phase of the BMT process and obtain the final doctor's "go ahead."
My doctor said everything looked fine, and that I was ready to start the chemo on Tuesday! I am still anemic (HCT 27, HGB 10), but my white counts were good. So, yeah, the next phase is a go. It was a very short appointment.
Then, my scheduling nurse came in and went over the some treatment details and the side-effects associated with very high doses with these drugs.
The first two drugs, G and N, are fairly innocuous compared with the other drugs. I should expect nausea/vomiting on a level comparable with ICE or Stanford V -- no problem. The big downside is that they are very concerned with mini blot clots perforating my liver. Strange, huh? So, to prevent liver damage, I have to be on a continuous IV of heparin over the next week (starting Tuesday). So I have to carry a little bag and pump wherever I go. Bah, something more to get in the way of one of my favorite things: starting the day off with a refreshing hot shower. How am I gonna manage that? I already have to spend quite some time waterproofing my catheter dressing each morning.
Next comes the BCNU (Carmustine), which is administered when I am admitted. From what I gather, this is the most hardcore of the drugs that I will receive. Other than the typical side-effects, this one has some strange effects that will occur for a short duration while it is being administered.
My nurse says to expect a severe headache for up to 24 hours... OK, no problem. Then she tells me to expect to be extremely irritated while the drug is being delivered. I'm doubtful at first: I've heard about chemo causing this sort of thing before, but never really experienced it myself. But, apparently, the nurses go as far as recommending that loved ones leave the room. My nurse has personally heard shouting, cursing, and general meanness from people who have received this first-hand.
Still, I can't imagine getting all angry just because of a drug. But then, get this: she tells me that they prescribe a dose of Haldol to patients before they receive BCNU. Haldol! The extremely hardcore sedative anti-psychotic! How's that for strange! This is the stuff they give to patients so unruly that they have to be doped up so that they don't hurt themselves or others.
Ok, maybe I can see myself a little irritated then. I mean, if they're giving you Haldol for cryin' out loud, it must be pretty bad.
Then, the next two drugs are VP-16 and Cytoxan. Same chemicals, but at ridiculous doses this time. Well, the Cytoxan I will receive will only be at a slightly higher dose than it was for my mobilization, but that was a ridiculous dose anyways.
Other that more severe versions of the typical side-effects, I can expect (read: very common) a large amount of skin irritation and mouth sores. The skin problems can get so severe it peels off (and is painful), and the mouth sores can get so bad I may not be able to eat. Both usually requires some amount of pain medication, ranging from moderate, to the IV morphine clicker.
As for the transplant itself, it is pretty uneventful. A 5 minute IV delivery of my old baby stem cells. I could feel a cold rush, some chest pain, a little anxiety, and smell like garlic (preservative) for a while.
And that's that! Sounds like fun, eh? :P
Monday, September 29, 2008
[9-29-08] Transfusion
[9:27pm]
Tomorrow I get my first transfusion -- how exciting is that?? The concept is appalling! I mean, someone else's blood is going to be put into my heart. That's pretty, uh, intimate, or something...
Well, whoever it was, I appreciate it... even if they only donated blood for a few bucks. Plus, consider the blood type: O negative rocks!! Universal donors: that's some valuable blood there. Of course, it's worst to be on the receiving end of that equation, but it is cool nonetheless.
The strange part is how comfortable, in comparison, I am with chemotherapy. Chemo is a chemical, that means it's "clean" by definition, right? Plus, it's usually clear. On the other hand, blood just seems so dirty. Whoe knows where that's been! Plus, it looks like it's clogging up the IV line... all dark and whatnot, blood stains are hard to get out!
...of course, I'd rather a blood stain than spilling chemo on myself. That stuff can be vicious.
Tomorrow I get my first transfusion -- how exciting is that?? The concept is appalling! I mean, someone else's blood is going to be put into my heart. That's pretty, uh, intimate, or something...
Well, whoever it was, I appreciate it... even if they only donated blood for a few bucks. Plus, consider the blood type: O negative rocks!! Universal donors: that's some valuable blood there. Of course, it's worst to be on the receiving end of that equation, but it is cool nonetheless.
The strange part is how comfortable, in comparison, I am with chemotherapy. Chemo is a chemical, that means it's "clean" by definition, right? Plus, it's usually clear. On the other hand, blood just seems so dirty. Whoe knows where that's been! Plus, it looks like it's clogging up the IV line... all dark and whatnot, blood stains are hard to get out!
...of course, I'd rather a blood stain than spilling chemo on myself. That stuff can be vicious.
Wednesday, September 24, 2008
[9-24-08] A Day in the Life
[12:32pm]
Yesterday, my hemoglobin was at 9.4. Today, who knows? One thing I do know is that I am totally tired and winded. I would boycott moving if I could.
Yesterday, when I got home, I slept, read a little, slept some more, and here I am. Sleep is good.
You know, they say anemia can effect concentration? That could explain a lot. Wait, what was I saying?
Anyhow, I got up this morning with a really weird feeling in my stomach. It was like I needed to eat something, but more dire and weirder feeling. After eating something, and taking my pills, it took an enormous amount of effort to keep everything down. I remember moving very slowly toward my ativan...
I guess I'm a bit more sensitive than I once was... and I'll definitely have to take my pills one at a time in the future.
Then I began my Neupogen injections. It is a very strange feeling to stab oneself. I think it is instinctual...
Well, it seems clear that Cytoxan has kicked my ass the most so far. Beats ICE and Stanford V. Perhaps a taste of what is to come? Now to go back to sleep.
[2:13pm]
After blissful slumber, I awoke with my stomach in knots. This is definitely hunger, but what to eat? I look across the kitchen cabinets and the more I think about food, the more my stomach shifts to nausea. Ok, food later, get a few anti-nausea pills in. The thought of pills makes it worse. My strategy: let an Ativan dissolve in the mouth, then take the other two anti-emetics.
After settling down for a few minutes, I allow my mind to reconsider the possibility of food. Nope... nothing seems to work. Except... my long-time food savior: the bagel. So, I toasted up a bagel with cream cheese and my stomach stopped acting up. I'm going to *live* off these suckers for a while!
Now that my stomach is a little happier, I can work on that 3 liters of water I need to drink today.
Yesterday, my hemoglobin was at 9.4. Today, who knows? One thing I do know is that I am totally tired and winded. I would boycott moving if I could.
Yesterday, when I got home, I slept, read a little, slept some more, and here I am. Sleep is good.
You know, they say anemia can effect concentration? That could explain a lot. Wait, what was I saying?
Anyhow, I got up this morning with a really weird feeling in my stomach. It was like I needed to eat something, but more dire and weirder feeling. After eating something, and taking my pills, it took an enormous amount of effort to keep everything down. I remember moving very slowly toward my ativan...
I guess I'm a bit more sensitive than I once was... and I'll definitely have to take my pills one at a time in the future.
Then I began my Neupogen injections. It is a very strange feeling to stab oneself. I think it is instinctual...
Well, it seems clear that Cytoxan has kicked my ass the most so far. Beats ICE and Stanford V. Perhaps a taste of what is to come? Now to go back to sleep.
[2:13pm]
After blissful slumber, I awoke with my stomach in knots. This is definitely hunger, but what to eat? I look across the kitchen cabinets and the more I think about food, the more my stomach shifts to nausea. Ok, food later, get a few anti-nausea pills in. The thought of pills makes it worse. My strategy: let an Ativan dissolve in the mouth, then take the other two anti-emetics.
After settling down for a few minutes, I allow my mind to reconsider the possibility of food. Nope... nothing seems to work. Except... my long-time food savior: the bagel. So, I toasted up a bagel with cream cheese and my stomach stopped acting up. I'm going to *live* off these suckers for a while!
Now that my stomach is a little happier, I can work on that 3 liters of water I need to drink today.
Friday, September 19, 2008
[9-19-08] Night Cough = Delayed Chemo?
[10:53pm]
This morning, my Stanford nurse called with a warning: Monday's Cytoxan could be delayed further if I continued to have an irregular chest x-ray.
With a night cough that has lasted for over a week despite antibiotics, I am growing increasingly concerned that there might actually be a troubling new diagnosis ahead. Even if there isn't, it doesn't seem to be going away, and I don't like the possibility of delaying chemo further. I understand the implications of reducing chemo-intensity and I don't like it.
Fighting cancer is such a stressful occupation. Sometimes I wish I didn't have to call nurses, schedule appointments, wait for return calls, and panic about impending test results. It would be nice to just chill. Or maybe work full-time -- a forced distraction would be nice... video games and the internet can only encompass so much time... responsibility creeps in.
Anyhow, I'm still isolated on the boat. It's going to be a big project getting this place prepared for post-cytoxan. Still, I can't delay the chemo even further due to illness -- that'd be devastating. Liz has a fever this weekend, so I can't see her either. I'm really bummed about that -- I was really looking forward to seeing her. Damn cancer.
Bah.
As for the catheter, it is really creepy injecting Heparin into a tube leading directly into your heart. Really freaky. You don't want any air bubbles! And don't forget to clamp the tube shut! The prospect of me forgetting something like that...
Well, at least I'm getting used to it.
This morning, my Stanford nurse called with a warning: Monday's Cytoxan could be delayed further if I continued to have an irregular chest x-ray.
With a night cough that has lasted for over a week despite antibiotics, I am growing increasingly concerned that there might actually be a troubling new diagnosis ahead. Even if there isn't, it doesn't seem to be going away, and I don't like the possibility of delaying chemo further. I understand the implications of reducing chemo-intensity and I don't like it.
Fighting cancer is such a stressful occupation. Sometimes I wish I didn't have to call nurses, schedule appointments, wait for return calls, and panic about impending test results. It would be nice to just chill. Or maybe work full-time -- a forced distraction would be nice... video games and the internet can only encompass so much time... responsibility creeps in.
Anyhow, I'm still isolated on the boat. It's going to be a big project getting this place prepared for post-cytoxan. Still, I can't delay the chemo even further due to illness -- that'd be devastating. Liz has a fever this weekend, so I can't see her either. I'm really bummed about that -- I was really looking forward to seeing her. Damn cancer.
Bah.
As for the catheter, it is really creepy injecting Heparin into a tube leading directly into your heart. Really freaky. You don't want any air bubbles! And don't forget to clamp the tube shut! The prospect of me forgetting something like that...
Well, at least I'm getting used to it.
Thursday, September 4, 2008
[9-04-08] Nausea
[4:27pm]
I am located on the boat, sitting cross-legged, and stationed in front of the television. The Giants vs. Redskins game is on. My cell phone, a thermometer, my laptop, a bottle of Ativan, some food and drink, and an empty fed-ex bag are all within my reach. Why the fed-ex bag? It was the nearest disposable container I could find.
In other words, this has been a very rough day for nausea... probably the worst. The kind of nausea where you gag and cough, have your mouth water, and grab the nearest container. Not fun. Anyhow, this is somewhat surprising to me -- you would think that the worst nausea would be during chemo, not afterwards. My theory is not that I am experiencing nausea directly from the chemo, instead, I am experiencing nausea due to the havoc that has been wrought to my gastrointestinal system. I hear chemo can due that. So, maybe, my stomach is so delicate right now, that it has difficulty holding anything.
This also may explain another side-effect I've been having. I was thinking that I was having some of those common mouth-sores under my tongue due to chemo, so the doctors prescribed some of that numbing mouthwash. However, now that I think about it, the pain was more located in the throat than in the mouth. In addition, occasionally it would be quite painful to talk, drink fluids, or swallow. Maybe it's part of the same problem: chemo killing those sensitive gastrointestinal cells.
Regardless of the cause, my only strategy is to take Ativan. I've also been trying to get something in my stomach (thinking that an empty stomach is contributing to my problem), but I can only eat a very small amount at a time. So that's where I'm at today. I'm sure the nausea will get better though -- it usually has it's bad moments, then goes away (especially with pill support).
It's also a bummer to miss watching the first football game of the season alone. But I still got to keep from getting sick.
--------------------------------------
There's been some developments on the Stanford front. Firstly, I may not need a BMT after all! The Stanford nurse has reported that I need the following tests:
1: A pulmonary function test (which I just had)
2: A Resting cardiac echo with doppler and estimated ejection fraction (which I'll need to get)
3: A Bone marrow biopsy with aspirate and cytogenetics (if the biopsy done late July included cytogenetics then another does not need to be done)
Please tell me the cytogenetics has been done!
The other news is that I have an appointment at Stanford on Monday at 10am. So things are progressing! It's mainly an appointment to collect my consent and my latest Pet/CT results. Nothing too big, I think, but maybe it'll establish a schedule for the next treatments.
The bummer is that I have to bring my latest Pet/CT CD, which means I have to drive to Berkeley and collect the CD in the morning, then drive to Stanford and deliver the CD. Cancer causes lots of driving!
I am located on the boat, sitting cross-legged, and stationed in front of the television. The Giants vs. Redskins game is on. My cell phone, a thermometer, my laptop, a bottle of Ativan, some food and drink, and an empty fed-ex bag are all within my reach. Why the fed-ex bag? It was the nearest disposable container I could find.
In other words, this has been a very rough day for nausea... probably the worst. The kind of nausea where you gag and cough, have your mouth water, and grab the nearest container. Not fun. Anyhow, this is somewhat surprising to me -- you would think that the worst nausea would be during chemo, not afterwards. My theory is not that I am experiencing nausea directly from the chemo, instead, I am experiencing nausea due to the havoc that has been wrought to my gastrointestinal system. I hear chemo can due that. So, maybe, my stomach is so delicate right now, that it has difficulty holding anything.
This also may explain another side-effect I've been having. I was thinking that I was having some of those common mouth-sores under my tongue due to chemo, so the doctors prescribed some of that numbing mouthwash. However, now that I think about it, the pain was more located in the throat than in the mouth. In addition, occasionally it would be quite painful to talk, drink fluids, or swallow. Maybe it's part of the same problem: chemo killing those sensitive gastrointestinal cells.
Regardless of the cause, my only strategy is to take Ativan. I've also been trying to get something in my stomach (thinking that an empty stomach is contributing to my problem), but I can only eat a very small amount at a time. So that's where I'm at today. I'm sure the nausea will get better though -- it usually has it's bad moments, then goes away (especially with pill support).
It's also a bummer to miss watching the first football game of the season alone. But I still got to keep from getting sick.
--------------------------------------
There's been some developments on the Stanford front. Firstly, I may not need a BMT after all! The Stanford nurse has reported that I need the following tests:
1: A pulmonary function test (which I just had)
2: A Resting cardiac echo with doppler and estimated ejection fraction (which I'll need to get)
3: A Bone marrow biopsy with aspirate and cytogenetics (if the biopsy done late July included cytogenetics then another does not need to be done)
Please tell me the cytogenetics has been done!
The other news is that I have an appointment at Stanford on Monday at 10am. So things are progressing! It's mainly an appointment to collect my consent and my latest Pet/CT results. Nothing too big, I think, but maybe it'll establish a schedule for the next treatments.
The bummer is that I have to bring my latest Pet/CT CD, which means I have to drive to Berkeley and collect the CD in the morning, then drive to Stanford and deliver the CD. Cancer causes lots of driving!
Sunday, August 31, 2008
[8-31-08] Discharge!
[10:15am]
Yay! I get to leave my room today! Hopefully around 12:00pm. Of course, they are insisting that I wear a mask, as my neutropenic score is 280!
That means that my WBC is 1.0, and Neutrophils at 28%.
I don't look forward to walking around with a mask. Bah. They're also planning on hooking me up with some more of that bone-pain-inducing Neupogen so that I get those counts up and return safely in two weeks. I've got to push forward!
Hemoglobin is still slipping at 10.5! Approaching that devastating 10. All this is like a race-track! I mean, sure, it's my life and everything, but who says you can't have a little fun playing the numbers?
If I sit around all day, hoping the numbers will get higher, I will surely find myself repeatedly disappointed. If I embrace the inevitable, then I can have a little fun with it. Look at falling numbers as a challenge, not a curse. Low numbers? Fine, a chance to test my mettle. Let's see how these numbers duke it out with the fabled sword of Neutroscalibur!
Ok, before I get too deep in the realm of silly. Allow me to make my point:
1: Things will suck.
2: Often, there is very little you can do about #1.
3: So just embrace it: make it a game, look forward to it, whatever it takes to make #1 not get you down. Because...
4: When it all comes down to it, and you've done everything you can, everything else is up to chance. So go with it.
Just a bit of my twisted philosophy.
Yay! I get to leave my room today! Hopefully around 12:00pm. Of course, they are insisting that I wear a mask, as my neutropenic score is 280!
That means that my WBC is 1.0, and Neutrophils at 28%.
I don't look forward to walking around with a mask. Bah. They're also planning on hooking me up with some more of that bone-pain-inducing Neupogen so that I get those counts up and return safely in two weeks. I've got to push forward!
Hemoglobin is still slipping at 10.5! Approaching that devastating 10. All this is like a race-track! I mean, sure, it's my life and everything, but who says you can't have a little fun playing the numbers?
If I sit around all day, hoping the numbers will get higher, I will surely find myself repeatedly disappointed. If I embrace the inevitable, then I can have a little fun with it. Look at falling numbers as a challenge, not a curse. Low numbers? Fine, a chance to test my mettle. Let's see how these numbers duke it out with the fabled sword of Neutroscalibur!
Ok, before I get too deep in the realm of silly. Allow me to make my point:
1: Things will suck.
2: Often, there is very little you can do about #1.
3: So just embrace it: make it a game, look forward to it, whatever it takes to make #1 not get you down. Because...
4: When it all comes down to it, and you've done everything you can, everything else is up to chance. So go with it.
Just a bit of my twisted philosophy.
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).
Thursday, August 28, 2008
[8-28-08] ICE Cycle 3, day 2
[12:10pm]
Well, time flies when you're diagnosing computer problems. In an attempt to boost my gaming situation here at the hospital, I acquired an HD (with component video) to usb device. This was so that I could hook up my xbox 360 to my laptop.
After hours and hours of work, I actually managed to get it to work on my system (apparently it fails in xp sp3), but I managed to hack around that. To my dismay, the video quality was poor and laggy. Impossible to play games with. After further research, I discovered that it is currently impossible to do what I was trying to do -- no product is available (in HD).
Oh well, I guess I've got to bring my lcd screen to Stanford. In trying to minimize my situation, I made things terribly complicated. No xbox on lappy.
And that's been my day so far. No chemo yet -- they plan to start around 2pm, so maybe I'll get some chemo before midnight this time. I'm just a tad frustrated...
So my white blood count is at 1.6, and my nurse told me to wash my hands more, and wear a protective mask around the hospital and whatnot. I've never had it before, but it sure explains the soreness around my throat -- annoyingly painful! Just to illustrate the way things have been going around here, I asked for some of that mouthwash at 11, and received it at 8:30pm. The order for chemo was processed by 12, and I started receiving hydration for that around 9:30pm, then the chemo two hours later. Calm down Austin, it will get better.
They have a bunch of "traveling nurses" that move from one hospital to the next. Apparently, the chemo certification is out of style. That was the cause of my delay -- no chemo nurses available. As for the mouthwash, I chalk it down to inefficiency or negligence. And they actually *expect* you to turn in all your own prescriptions that your brought?!?! Ha! My Vicodin is well stashed away -- if I get some severe pain, I don't want to wait 8 hours to get relief!
My hemoglobin is slowly descending -- right now it is at 11. That explains why I still have some energy -- I know from experience that I turn into a anemic sloth at around a hemoglobin level of 10.
[12:55pm]
Lunch is right on time, five till one. I guess it makes since. Since most cancer patients probably abhor food right now, it benefits everyone else to serve us last. Then you've got the young buck with Hodgkin's to screw everything up.
Headache, headache, headache... This is the fourth day in a row that I've had to deal with an annoying headache. If I didn't know any better, I would say that I'm stressed! But that's just not true. I should be, but I'm not. Anyhow, maybe if I score some coffee things will get better. Apparently, it dilates the blood vessels on your head or something.
[2:14pm]
On the topic of "magic mouthwash." Let it be known that I feel apprehension in describing a perfectly proven form of Western medicine in a manner fit for mystical treatment. Every time I say, "Please, could you get me some of that numbing mouthwash?" The nurse says, "Oh, the magic mouthwash. Sure thing." I've tried several times. Sometimes they get confused if I describe it in any other term.
Accordingly, I have been forced to relent. Still, a bit of my soul is chipped away each time I say the term "magic."
On another note, the big boss (oncology manager) came to visit me to ask me if I was being cared for properly. Mwa ha ha I got to relate my horror story about waiting 8 hours for relief medication, and 9 hours for chemo. It felt good.
I also wanted to say a few words about my internet friend Bekah. She just completed a bone marrow transplant, and found out a few days ago that the treatment has failed. The remaining options are not as promising. That sucks. In a way, I feel like we're peers; I kinda look up to her. I hope for the best.
Well, time flies when you're diagnosing computer problems. In an attempt to boost my gaming situation here at the hospital, I acquired an HD (with component video) to usb device. This was so that I could hook up my xbox 360 to my laptop.
After hours and hours of work, I actually managed to get it to work on my system (apparently it fails in xp sp3), but I managed to hack around that. To my dismay, the video quality was poor and laggy. Impossible to play games with. After further research, I discovered that it is currently impossible to do what I was trying to do -- no product is available (in HD).
Oh well, I guess I've got to bring my lcd screen to Stanford. In trying to minimize my situation, I made things terribly complicated. No xbox on lappy.
And that's been my day so far. No chemo yet -- they plan to start around 2pm, so maybe I'll get some chemo before midnight this time. I'm just a tad frustrated...
So my white blood count is at 1.6, and my nurse told me to wash my hands more, and wear a protective mask around the hospital and whatnot. I've never had it before, but it sure explains the soreness around my throat -- annoyingly painful! Just to illustrate the way things have been going around here, I asked for some of that mouthwash at 11, and received it at 8:30pm. The order for chemo was processed by 12, and I started receiving hydration for that around 9:30pm, then the chemo two hours later. Calm down Austin, it will get better.
They have a bunch of "traveling nurses" that move from one hospital to the next. Apparently, the chemo certification is out of style. That was the cause of my delay -- no chemo nurses available. As for the mouthwash, I chalk it down to inefficiency or negligence. And they actually *expect* you to turn in all your own prescriptions that your brought?!?! Ha! My Vicodin is well stashed away -- if I get some severe pain, I don't want to wait 8 hours to get relief!
My hemoglobin is slowly descending -- right now it is at 11. That explains why I still have some energy -- I know from experience that I turn into a anemic sloth at around a hemoglobin level of 10.
[12:55pm]
Lunch is right on time, five till one. I guess it makes since. Since most cancer patients probably abhor food right now, it benefits everyone else to serve us last. Then you've got the young buck with Hodgkin's to screw everything up.
Headache, headache, headache... This is the fourth day in a row that I've had to deal with an annoying headache. If I didn't know any better, I would say that I'm stressed! But that's just not true. I should be, but I'm not. Anyhow, maybe if I score some coffee things will get better. Apparently, it dilates the blood vessels on your head or something.
[2:14pm]
On the topic of "magic mouthwash." Let it be known that I feel apprehension in describing a perfectly proven form of Western medicine in a manner fit for mystical treatment. Every time I say, "Please, could you get me some of that numbing mouthwash?" The nurse says, "Oh, the magic mouthwash. Sure thing." I've tried several times. Sometimes they get confused if I describe it in any other term.
Accordingly, I have been forced to relent. Still, a bit of my soul is chipped away each time I say the term "magic."
On another note, the big boss (oncology manager) came to visit me to ask me if I was being cared for properly. Mwa ha ha I got to relate my horror story about waiting 8 hours for relief medication, and 9 hours for chemo. It felt good.
I also wanted to say a few words about my internet friend Bekah. She just completed a bone marrow transplant, and found out a few days ago that the treatment has failed. The remaining options are not as promising. That sucks. In a way, I feel like we're peers; I kinda look up to her. I hope for the best.
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.
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!
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.
[8-15-08] The "Don't Give Me Less Chemo Study."
Here's the study: The Importance of Planned Dose of Chemotherapy on Time: Do We Need to Change Our Clinical Practice?
The conclusion of the study:
I encourage anyone to read the study first and form their own opinions, before listening to my views.
My belief, is that the study may be controversial. No one wants to be told that their oncologist may have made a sub-optimal decision regarding their treatment. Basically, a dose reduction or a delayed dose results in a reduction in the relative dose intensity (RDI: percentage dose relative to the standard dose) of the regimen. The study looks, retroactively, at the survival results when a group of patients are 50% RDI or 70% RDI. The findings: There is a significant reduction in patient survival.
My belief, is that the study makes sense. Accordingly, I will always resist, to the best of my ability, and dose reduction or delayed treatment. Bring on the neupogen!
Note: I'm not saying that I resist having only 2 ICE treatments. I am saying, that if those two treatments were a month apart or at reduced doses, then I would have a problem.
The conclusion of the study:
"When chemotherapy is being given with curative intent, we believe that it is important to avoid reductions and delays in chemotherapy if the best possible outcome is to be achieved, although this is not possible for all patients."
I encourage anyone to read the study first and form their own opinions, before listening to my views.
My belief, is that the study may be controversial. No one wants to be told that their oncologist may have made a sub-optimal decision regarding their treatment. Basically, a dose reduction or a delayed dose results in a reduction in the relative dose intensity (RDI: percentage dose relative to the standard dose) of the regimen. The study looks, retroactively, at the survival results when a group of patients are 50% RDI or 70% RDI. The findings: There is a significant reduction in patient survival.
My belief, is that the study makes sense. Accordingly, I will always resist, to the best of my ability, and dose reduction or delayed treatment. Bring on the neupogen!
Note: I'm not saying that I resist having only 2 ICE treatments. I am saying, that if those two treatments were a month apart or at reduced doses, then I would have a problem.
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.
Wednesday, August 13, 2008
[8-13-08] No ICE? What a drag.
[10:36am]
I just got settled in! I set up my laptop, plugged in Barbara's hard drive, put away my clothes, and politely refused to wear a gown. I mean, it doesn't make any sense! I want to feel human, not like some sick person! Granted, I am sick... but that doesn't mean I have to feel sick!
It's also funny that they all seem to think that, without a gown, I will choose to instead sleep in my jeans. "We have some pajama pants you can wear..." Maybe they're extremely prudish?
But it's like, "H-e-l-l-o!! I have Hodgkin's Lymphoma...anyone know what that means...anyone...anyone...Bueller?" Night sweats! And if you think I'm a going nite-nite in anything other than my undies, you got another thing coming!
So, no gown. :) I am, of course, wearing clothes :P
[12:28pm]
Red Warrior needs food badly!
Hmmm... I'm such a pig. Nurse is trying to explain all the upcoming chemo and side effects, and I'm like: "Yes, yes, but when is the food coming?" and she's like: "Well, usually lun..." and I'm like: "YES, FOOD! FOOD FOOD FOOD!"
*ahem* Yes. The point is that I'm not used to having to wait for food. I suppose I am spoiled in that regard. At home, when I am hungry, I eat. Simple as that. Accordingly, it has turned into somewhat of a personal obsession over the past thirty minutes. I think to myself: "I wonder what's going to be on the menu...French fries? No...they wouldn't dare...At least some type of desert object though...Thats good...But will they remember that I usually eat double portions? Or will they screw me on the first day?" Arrrgh! So much stress!
[1:24pm]
Hmmm....I found a Japanese Restaurant that will deliver here. I hope the staff here wouldn't consider that rude...
[1:47pm]
Ah, I've been fed. All is right in the world. Chemo hasn't started yet, but my lab results are in!
WBC: 5.1 [Nom: 4.8 to 10.8]
RBC: 3.8 [Nom: 4.7 to 6.1]
HGB: 11.7 [Nom: 14 to 18]
Slightly anemic, but not immunosuppressed. Chemo is a go!
[3:43pm]
Chemo is not a go! There hasn't been any chemo orders faxed from Irwin's office. The pharmacy closes at 4:30pm. No orders before 4:30pm means no chemo today. In other words, the whole day will be pointless. Bah, more stress. It's not fighting cancer, it's fighting to get treated!
[4:00pm]
Dr. C isn't going to send the orders today. I have no clue why. No chemo today. What a waste. Bah.
The nurse came in and was furious!! It was awesome! She said something about "kicking" my "doctor's butt" and then immediately apologized for being "extremely unprofessional." She explained that she was a patient advocate, and things like these especially infuriated her. Rock on!
She then gave me a $10 cafeteria voucher for all the inconvenience. Kinda silly to be spending thousands and thousands for hospital care, delaying your life-saving chemo, and wasting an entire day, only to be given a little $10 voucher. I got a bacon cheeseburger and fries. It was worth it :P
Plus, the good news is that they are going to start the hydration process in a couple of hours. That process takes at least 5 hours. The entire day won't be completely a waste, in other words. So, getting that out of the way, I will be able to start my day with a fresh cup of chemo.
Watching: League of Gentlemen (Silly BBC Comedy)
I just got settled in! I set up my laptop, plugged in Barbara's hard drive, put away my clothes, and politely refused to wear a gown. I mean, it doesn't make any sense! I want to feel human, not like some sick person! Granted, I am sick... but that doesn't mean I have to feel sick!
It's also funny that they all seem to think that, without a gown, I will choose to instead sleep in my jeans. "We have some pajama pants you can wear..." Maybe they're extremely prudish?
But it's like, "H-e-l-l-o!! I have Hodgkin's Lymphoma...anyone know what that means...anyone...anyone...Bueller?" Night sweats! And if you think I'm a going nite-nite in anything other than my undies, you got another thing coming!
So, no gown. :) I am, of course, wearing clothes :P
[12:28pm]
Red Warrior needs food badly!
Hmmm... I'm such a pig. Nurse is trying to explain all the upcoming chemo and side effects, and I'm like: "Yes, yes, but when is the food coming?" and she's like: "Well, usually lun..." and I'm like: "YES, FOOD! FOOD FOOD FOOD!"
*ahem* Yes. The point is that I'm not used to having to wait for food. I suppose I am spoiled in that regard. At home, when I am hungry, I eat. Simple as that. Accordingly, it has turned into somewhat of a personal obsession over the past thirty minutes. I think to myself: "I wonder what's going to be on the menu...French fries? No...they wouldn't dare...At least some type of desert object though...Thats good...But will they remember that I usually eat double portions? Or will they screw me on the first day?" Arrrgh! So much stress!
[1:24pm]
Hmmm....I found a Japanese Restaurant that will deliver here. I hope the staff here wouldn't consider that rude...
[1:47pm]
Ah, I've been fed. All is right in the world. Chemo hasn't started yet, but my lab results are in!
WBC: 5.1 [Nom: 4.8 to 10.8]
RBC: 3.8 [Nom: 4.7 to 6.1]
HGB: 11.7 [Nom: 14 to 18]
Slightly anemic, but not immunosuppressed. Chemo is a go!
[3:43pm]
Chemo is not a go! There hasn't been any chemo orders faxed from Irwin's office. The pharmacy closes at 4:30pm. No orders before 4:30pm means no chemo today. In other words, the whole day will be pointless. Bah, more stress. It's not fighting cancer, it's fighting to get treated!
[4:00pm]
Dr. C isn't going to send the orders today. I have no clue why. No chemo today. What a waste. Bah.
The nurse came in and was furious!! It was awesome! She said something about "kicking" my "doctor's butt" and then immediately apologized for being "extremely unprofessional." She explained that she was a patient advocate, and things like these especially infuriated her. Rock on!
She then gave me a $10 cafeteria voucher for all the inconvenience. Kinda silly to be spending thousands and thousands for hospital care, delaying your life-saving chemo, and wasting an entire day, only to be given a little $10 voucher. I got a bacon cheeseburger and fries. It was worth it :P
Plus, the good news is that they are going to start the hydration process in a couple of hours. That process takes at least 5 hours. The entire day won't be completely a waste, in other words. So, getting that out of the way, I will be able to start my day with a fresh cup of chemo.
Watching: League of Gentlemen (Silly BBC Comedy)
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