[1:32pm]
On Monday, I bargained with my doctors to be let out on Wednesday. All I had to do was drink 3 liters of water a day, eat some food, and practice my breathing exercises. On Tuesday evening, after it was evident that I had fulfilled all of my promises, the doctors agreed to discharge me on Wednesday.
So why did I not shout out with glee? Why did I keep this wonderful news to myself? Because it was something so great, that if it were to be taken from me, my heart would be broken. To never acknowledge this news is to never expect it; if I don't expect it, then its failure to come true will not disappoint.
In other words, I feared that somehow they would take this promise of freedom away from me... and they almost did.
Last night, I had a fever of 38.2 for slightly under an hour. They ordered some blood cultured (which take a few days to process) and took some blood samples. At this point, I was sure that I had more time on my tenure at Stanford Hospital -- I was mortified.
Fortunately, when the doctors approached me this morning they said that I technically did not have a fever! If you have a temperature of 38.3 or above, then you have a fever. If you have a temperature of 38.2 for over an hour, then you have a fever. I just squeaked by!
After the doctors made me promise to return if the blood cultures showed any positives, or if my fever returned, they promised me that I would get discharged today!
All that happened about 4 hours ago, but it has not set in until now. I've been spending the day like I've been spending the past few days -- sleeping as much as I possibly can. I have no doubt that I was in a hospital-induced depression.
Just in the past half hour or so, I have felt that fog start to lift. I look out my window and stare at the auburn trees in the wind and think: "that's freedom." Then I get filled with such a profound mix of emotions that my eyes can't help but get a bit teary. I am not an emotional guy.
I felt the same way when my mom insisted we go out for a walk. I had spent the entire day sleeping (or tying to sleep) and I think she recognized, for the sake of my spirits, that I needed a change of venue.
So we left the BMT ward, and she wheel-chaired me around the hospital. At one point, we came across two large doors opening the hospital to the dark outside. She asked me, "Do you want to go outside?"
I wanted to go out more than anything in the world. "But we can't," I said.
"Of course we can! Let 'em try to stop me," she announced.
Out there, in the freezing night air, I felt completely happy. I felt that weird mix of strong emotions that I spoke of previously; the emotions that made me teary eyed. I wanted to never go indoors ever again. Mom asked me if I wanted to go back inside, but I told her that I wanted to wait for a few more minutes. Then the wind got the best of me, and we returned to the BMT ward.
So here I am again, in my room, watching the gardeners do their work in the garden below. And I think to myself: "That has got to be the most wonderful job in the world." To spend all that time outside... exerting yourself... creating life. It make me want to abandon my engineering discipline for something that would keep me outdoors -- forget the difference in salary. It reminds me of the movie "Office Space," where the protagonist leaves his job in a cubicle and ultimately finds happiness in construction.
Still, I'm sitting here thinking about my feelings... and I think I may have been expressing only half of the story. It's not that I love the outdoors, it's that I hate being trapped indoors. It's not that I love my freedom, it's that I hate losing it.
Now, I'm not an idiot -- I very well recognize that this little hospital stay may have just saved my life. But that doesn't change the fact that, somehow, I have been wronged... and maybe I'm just shooting the messenger, but I can't help how I feel: I hate this hospital.
Please don't think me unappreciative, but, as I said, all this dehumanizes us cancer patients. We're not at a hospital -- we're at a veterinary clinic. Now, do you think those cats and dogs appreciate their shots and rectal examinations? I bet you they hate the vet too.
See why I can't wait to get out?
Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Wednesday, November 19, 2008
Tuesday, November 18, 2008
[11-18-08] The Morality of Suffering (Day +15)
[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.
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.
Friday, November 14, 2008
[11-14-08] The System is Down (Day +11)
[6:32pm]
Here's my counts:
WBC: 6.9 (1.3 yesterday)
Hematocrit: 28.6 (29.0 yesterday)
Platelets: 20,000 (16,000 yesterday)
This is going to be a short post because... duhn duhn DUHN... THE INTERNET IS OUT!!! NOOOOOOOOOOOOOOOooooooooo
Something went awry with the medical network yesterday. Nurses were waiting in line to use the printer, because they had to record everything on paper. They would no longer use their fancy "vitals machine". (which combines an automated blood pressure cuff, a digital thermometer, an O2 Saturation probe, and a computer to automate, record, and transmit the information down those network pipes.)
In other words, if you hit the call button in an effort to get more water, be prepared to repeat your request and wait several hours. Well, that's not entirely true -- some nurses adapt better than others.
What is interesting about this network disaster is that the free public wireless was working fine throughout the day. The next day, when they finally fix the network, the public wireless fails utterly. And that's where I'm at -- I've been on the phone with the techs -- they say it should be fixed by tomorrow.
In the meantime, I've been using some unreliable 1-bar public wireless from (I believe) a hospital nearby. It's a bit frustrating.
So, here is a bit of news for the day:
Mouth is finally beginning to heal! Maybe tomorrow I'll be able to speak like a real human!
Continuous portion of pain meds discontinued (clicking on-demand still works)! Earlier today, they decided to cut the continuous portion in half to ween me off the Fentanyl. When it was revealed that my problems going #1 were due to the continuous dose, I jumped on the idea of removing it entirely.
I may be discharged early -- the doctors pointed to the 18th on the calendar. However, some of the requirements were that:
1:I had no pain so severe that pain management was necessary (so mouth gets better). Alternative Interpretation: No dependence on pain meds.
2:Able to eat! (Again, mouth gets better)
3:No Fever
That is all.
Here's my counts:
WBC: 6.9 (1.3 yesterday)
Hematocrit: 28.6 (29.0 yesterday)
Platelets: 20,000 (16,000 yesterday)
This is going to be a short post because... duhn duhn DUHN... THE INTERNET IS OUT!!! NOOOOOOOOOOOOOOOooooooooo
Something went awry with the medical network yesterday. Nurses were waiting in line to use the printer, because they had to record everything on paper. They would no longer use their fancy "vitals machine". (which combines an automated blood pressure cuff, a digital thermometer, an O2 Saturation probe, and a computer to automate, record, and transmit the information down those network pipes.)
In other words, if you hit the call button in an effort to get more water, be prepared to repeat your request and wait several hours. Well, that's not entirely true -- some nurses adapt better than others.
What is interesting about this network disaster is that the free public wireless was working fine throughout the day. The next day, when they finally fix the network, the public wireless fails utterly. And that's where I'm at -- I've been on the phone with the techs -- they say it should be fixed by tomorrow.
In the meantime, I've been using some unreliable 1-bar public wireless from (I believe) a hospital nearby. It's a bit frustrating.
So, here is a bit of news for the day:
Mouth is finally beginning to heal! Maybe tomorrow I'll be able to speak like a real human!
Continuous portion of pain meds discontinued (clicking on-demand still works)! Earlier today, they decided to cut the continuous portion in half to ween me off the Fentanyl. When it was revealed that my problems going #1 were due to the continuous dose, I jumped on the idea of removing it entirely.
I may be discharged early -- the doctors pointed to the 18th on the calendar. However, some of the requirements were that:
1:I had no pain so severe that pain management was necessary (so mouth gets better). Alternative Interpretation: No dependence on pain meds.
2:Able to eat! (Again, mouth gets better)
3:No Fever
That is all.
Monday, November 10, 2008
[11-10-08] Totally Acclimated (Day +7)
[10:52am]
Here's my counts:
WBC: 0.1 (0.1 yesterday)
Hematocrit: 29.2 (29.5 yesterday)
Platelets: 18,000 (32,000 yesterday)
Hemoglobin: 10.5 (10.5 yesterday)
So, I haven't entered the "recovery phase" yet. Basically, I've been told that once the WBC starts to go up, then I will have begun recovery and all my symptoms will begin to improve.
Naturally, I'm paying a lot of attention to when that day occurs -- I look forward to a reduction in "mouth pain." (The only other major symptom is the myriad of skin problems.)
***
It was only a week ago that I had my stem-cell transplant -- for me, it seems like the time has flown by. I guess that's a darn good thing to feel -- that time flies in the BMT ward. Probably a bit unusual too...
Pre-transplant was a different story -- that was generally a pretty rough time (The ICU, the chemo, the nausea/vomiting). On the other hand, once I was moved into isolation (single room) things rapidly got much better. By then I was only concerned with skin problems and mouth pain. Once I began Fentanyl for mouth pain and religiously began applying skin care stuff, I found that I was no longer counting the days until departure... time was moving faster; I was enjoying myself.
I guess my point is that I have completely acclimated myself to my particular room in the BMT ward. I have an established routine For the time being, this is my new home. It is nice.
Here's my counts:
WBC: 0.1 (0.1 yesterday)
Hematocrit: 29.2 (29.5 yesterday)
Platelets: 18,000 (32,000 yesterday)
Hemoglobin: 10.5 (10.5 yesterday)
So, I haven't entered the "recovery phase" yet. Basically, I've been told that once the WBC starts to go up, then I will have begun recovery and all my symptoms will begin to improve.
Naturally, I'm paying a lot of attention to when that day occurs -- I look forward to a reduction in "mouth pain." (The only other major symptom is the myriad of skin problems.)
***
It was only a week ago that I had my stem-cell transplant -- for me, it seems like the time has flown by. I guess that's a darn good thing to feel -- that time flies in the BMT ward. Probably a bit unusual too...
Pre-transplant was a different story -- that was generally a pretty rough time (The ICU, the chemo, the nausea/vomiting). On the other hand, once I was moved into isolation (single room) things rapidly got much better. By then I was only concerned with skin problems and mouth pain. Once I began Fentanyl for mouth pain and religiously began applying skin care stuff, I found that I was no longer counting the days until departure... time was moving faster; I was enjoying myself.
I guess my point is that I have completely acclimated myself to my particular room in the BMT ward. I have an established routine For the time being, this is my new home. It is nice.
Sunday, November 9, 2008
[11-09-08] Fentanyl Conspiracy (Day +6)
[8:37am]
It's no surprise that I have a severe aversion to pain. I've ranted on the subject on several occasions and even have a dedicated tag to link all "pain" postings. Whether it be a bone marrow biopsy or neupogen-associated pain... I hate the pain, and will write about it.
So, you didn't actually think that was the final word on Fentanyl/mouth pain, did ya? Well, the mouth pain is only getting worse, and the Fentanyl and it's requirements are getting quite absurd.
For example:
They hook you up to a pulse/SPO2 (Respiration Oxygen?) monitor as a requirement for anyone on PCA (Patient Controlled Analgesics). This is annoying for all the standard reasons:
1:If you want to go to the bathroom or anything, you have to turn the machine off, then unplug your probe lead (which is tricky in the dark). Multiply this act for every time you need to go to the bathroom/brush teeth/use sink/relocate... and you'll find that you spend quite a lot of time doing this.
2:You have to wear the darn probe indefinitely -- removal destroys the probe. So, one of your left fingers will be made useless -- and especially now, I need *all* my fingers (tricky catheter de-occlusion maneuvers, applying lotion, typing).
But these are just problems of convenience -- the real difficulty lies in the SP (Saturation Percentage) reading for your Oxygen (O2) levels. If, for any reason, the machine thinks that this level is lower than 87, it beeps LOUDLY! This makes sense, as large doses of Fentanyl can cause a decrease in respiration. However, there are a couple of problems with the SP02 reading:
1: A wet or sweaty probe causes drastic reductions in the measured SP02 level (Alarm goes off). This means that you cannot wash your left hand...ever? Ok, so you've figured out how to wash everything *but* the finger with a clever use of a ziploc bag or something... but then, how does one take a shower without it getting wet? Then there's the sweats -- maybe my fingers sweat while in a plastic probe?
2: A loose probe connection ALWAYS causes a reduction in SP02. Remember how one has to wear the probe non-stop 24/7? Well, if any one of a million actions during that time causes the little red light to become misaligned... be prepared for many alarms.
3: Sleeping on one's side causes a reduction in SP02 (for some reason) -- in order to get any sleep during the night, be prepared to learn how to sleep on your back.
4: Random machine weirdness. You could be sitting up, typing away on your computer, no Fentanyl delivered for an hour... and the SP02 alarm goes off. Or it says your pulse is 230 and people come rushing in.
So, where's the conspiracy theory? Well, it's not actually a conspiracy -- I don't think there's a consortium of nurses plotting to prove that the amount of pain I experience does not justify the amount of Fentanyl I use.
I do, however, seem to experience a lack of concern about forced sleeping positions, noisy machines, or the accuracy of the current SP02 reading. The answer to all these problems seems to be the implied: "Well, just take less Fentanyl and you'll be fine."
In honestly think there are nurses here who believe I am taking more Fentanyl than I need, and am currently over-medicated on it. Nevermind the fact that I wake up at 7 and approach the day bright-eyed and bushy tailed... I even skip my afternoon nap so that I can get better sleep at night. The nap, being tired... these things are perfectly normal for a cancer patient undergoing BMT, but nevertheless, I feel like I need to demonstrate my clarity of thought. I also don't have dizzy spells or other things associated with too much Fentanyl.
Still, there have been times where the pain was great and I repeatedly took extra Fentanyl... I'm sure I was a bit drowsy then... but nothing dangerous!
-----------------------------
Enough of my rant. I just finished typing it when my two doctors showed up...
Doctor: "So how has your pain management been doing?"
Me: "Not so well -- I haven't been clicking the relief button because this darn machine gives inaccurate readings, and taking extra Fentanyl doesn't help things. For example, I can't click at all if I want to sleep on my side -- I need to get to sleep. So I usually just work through the pain; plus, I feel that some of the nurses don't want me clicking... maybe because my dose is too high, or that it's dangerous or something."
(Both Doctors) "No, no, no, no, no."
(First Doctor) "Take the Fentanyl -- that's what it's there for. The nurses should be checking the machine's accuracy routinely... there's this bar that goes up and down with your pulse... [forget details] Plus, there's always a doctor on call -- tell the nurses to contact the doctor if they have an issue with your SPO2. I'll be on call tonight if anything comes up.
Me: "Ok, thanks. So, just to be sure, it's OK if I click repeatedly if I have pain?"
Doctor: "If you have pain; take the Fentanyl."
Then they went on to discuss other parts of my health.
So... GREAT! I feel so liberated! This has been a huge weight on my shoulders: pain on one side/upsetting nurses on the other (though I'm sure with some nurses it's all in my head; some are more explicit though).
As originally planned, I'm going to click when I feel pain! It's so simple! *duh* Stupid Austin: Don't let others push you around.
On another note, Barbara mentioned how I haven't been posting my counts -- I'll try to start doing that. She seemed pleased that my WBC went from 0.1 to 0.6 (on Friday)... well, my WBC taken yesterday was 0.1.
I'm told that I'm not recovering yet; that it's still a good 5-9 days or so before I start to recover.
It's no surprise that I have a severe aversion to pain. I've ranted on the subject on several occasions and even have a dedicated tag to link all "pain" postings. Whether it be a bone marrow biopsy or neupogen-associated pain... I hate the pain, and will write about it.
So, you didn't actually think that was the final word on Fentanyl/mouth pain, did ya? Well, the mouth pain is only getting worse, and the Fentanyl and it's requirements are getting quite absurd.
For example:
They hook you up to a pulse/SPO2 (Respiration Oxygen?) monitor as a requirement for anyone on PCA (Patient Controlled Analgesics). This is annoying for all the standard reasons:
1:If you want to go to the bathroom or anything, you have to turn the machine off, then unplug your probe lead (which is tricky in the dark). Multiply this act for every time you need to go to the bathroom/brush teeth/use sink/relocate... and you'll find that you spend quite a lot of time doing this.
2:You have to wear the darn probe indefinitely -- removal destroys the probe. So, one of your left fingers will be made useless -- and especially now, I need *all* my fingers (tricky catheter de-occlusion maneuvers, applying lotion, typing).
But these are just problems of convenience -- the real difficulty lies in the SP (Saturation Percentage) reading for your Oxygen (O2) levels. If, for any reason, the machine thinks that this level is lower than 87, it beeps LOUDLY! This makes sense, as large doses of Fentanyl can cause a decrease in respiration. However, there are a couple of problems with the SP02 reading:
1: A wet or sweaty probe causes drastic reductions in the measured SP02 level (Alarm goes off). This means that you cannot wash your left hand...ever? Ok, so you've figured out how to wash everything *but* the finger with a clever use of a ziploc bag or something... but then, how does one take a shower without it getting wet? Then there's the sweats -- maybe my fingers sweat while in a plastic probe?
2: A loose probe connection ALWAYS causes a reduction in SP02. Remember how one has to wear the probe non-stop 24/7? Well, if any one of a million actions during that time causes the little red light to become misaligned... be prepared for many alarms.
3: Sleeping on one's side causes a reduction in SP02 (for some reason) -- in order to get any sleep during the night, be prepared to learn how to sleep on your back.
4: Random machine weirdness. You could be sitting up, typing away on your computer, no Fentanyl delivered for an hour... and the SP02 alarm goes off. Or it says your pulse is 230 and people come rushing in.
So, where's the conspiracy theory? Well, it's not actually a conspiracy -- I don't think there's a consortium of nurses plotting to prove that the amount of pain I experience does not justify the amount of Fentanyl I use.
I do, however, seem to experience a lack of concern about forced sleeping positions, noisy machines, or the accuracy of the current SP02 reading. The answer to all these problems seems to be the implied: "Well, just take less Fentanyl and you'll be fine."
In honestly think there are nurses here who believe I am taking more Fentanyl than I need, and am currently over-medicated on it. Nevermind the fact that I wake up at 7 and approach the day bright-eyed and bushy tailed... I even skip my afternoon nap so that I can get better sleep at night. The nap, being tired... these things are perfectly normal for a cancer patient undergoing BMT, but nevertheless, I feel like I need to demonstrate my clarity of thought. I also don't have dizzy spells or other things associated with too much Fentanyl.
Still, there have been times where the pain was great and I repeatedly took extra Fentanyl... I'm sure I was a bit drowsy then... but nothing dangerous!
-----------------------------
Enough of my rant. I just finished typing it when my two doctors showed up...
Doctor: "So how has your pain management been doing?"
Me: "Not so well -- I haven't been clicking the relief button because this darn machine gives inaccurate readings, and taking extra Fentanyl doesn't help things. For example, I can't click at all if I want to sleep on my side -- I need to get to sleep. So I usually just work through the pain; plus, I feel that some of the nurses don't want me clicking... maybe because my dose is too high, or that it's dangerous or something."
(Both Doctors) "No, no, no, no, no."
(First Doctor) "Take the Fentanyl -- that's what it's there for. The nurses should be checking the machine's accuracy routinely... there's this bar that goes up and down with your pulse... [forget details] Plus, there's always a doctor on call -- tell the nurses to contact the doctor if they have an issue with your SPO2. I'll be on call tonight if anything comes up.
Me: "Ok, thanks. So, just to be sure, it's OK if I click repeatedly if I have pain?"
Doctor: "If you have pain; take the Fentanyl."
Then they went on to discuss other parts of my health.
So... GREAT! I feel so liberated! This has been a huge weight on my shoulders: pain on one side/upsetting nurses on the other (though I'm sure with some nurses it's all in my head; some are more explicit though).
As originally planned, I'm going to click when I feel pain! It's so simple! *duh* Stupid Austin: Don't let others push you around.
On another note, Barbara mentioned how I haven't been posting my counts -- I'll try to start doing that. She seemed pleased that my WBC went from 0.1 to 0.6 (on Friday)... well, my WBC taken yesterday was 0.1.
I'm told that I'm not recovering yet; that it's still a good 5-9 days or so before I start to recover.
Saturday, November 8, 2008
[11-08-08] Long Night + Fentanyl (Day +5)
[8:48am]
Last night was a looooong night. Not a hard night; a long night.
We had several objectives:
1: IVIG (Norwalk Treatment) - Represents about 4 hours of the nurse coming in and out.
2: Bag of Platelets (Due to some rectal bleeding I discovered on Fri.) - Represents about an hour of nurse coming in and out of room.
3: Two units of blood transfused (Hematocrit is at 26 -- bah, I could go way lower, but I guess it's better to be safe than sorry). Plus, those bags are liquid energy -- like the stimpacks from video games - "Let's get some!" Two bags represents 6 to 8 hours of the nurse coming in and out of the room.
4: All the usual stuff -- Antibiotics, hydration, etc...
Calculate the fact that the PICC line has only two lumens, and you have a long evening indeed -- We just finished a couple of ours ago.
So where does Fentanyl come into play? Where doesn't it! Well, I would fall asleep, the nurse would wake me up and ask me my current pain -- I'd usually say something like 4 or 5 (because the psin is usually high upon awakening). Then, I'd click the Fentanyl clicker. This would, in turn, lower my respiration and make me feel a heckova lot better.
But the respiration going lower wasn't a good thing if I was to be going to sleep -- ya gotta keep breathing in those dreams of yours!
Accordingly, they put be on oxygen durning the night.
Despite the respiration, I was in pain, so I continued to click away. Maybe I'm worse at night because there is no mental acuity/pain tradeoff when I am asleep...
Anyhow, I got a little Fentanyl lecture. Not a stern one, just a "Hey, don't be reckless with this stuff -- it's dangerous" lecture. In a way, it was quite disappointing, because I like this nurse and I most certainly do not use Fentanyl recreationally - I may joke about it, but it is really all about pain relief.
I recall a nurse answering a question from my mom on the suject of chemical dependency... The nurse replied, "As long you as take the drug as prescribed: to relieve pain, anxiety, or whatever it is indicated for. there is zero percent chance of addiction.
You may be able to tell my writing is being influenced by Fentanyl at present, but should that prevent me from taking more if I am in pain?
No Way!
P.S. - I finished assembling my metal praying mantis that Barbara got for me -- it's awesome!
[9:54am]
I just had to be instructed in general ass care and proper application of lotions. This is because of the previously mentioned problem in the rear. *sigh* How embarassing.
Last night was a looooong night. Not a hard night; a long night.
We had several objectives:
1: IVIG (Norwalk Treatment) - Represents about 4 hours of the nurse coming in and out.
2: Bag of Platelets (Due to some rectal bleeding I discovered on Fri.) - Represents about an hour of nurse coming in and out of room.
3: Two units of blood transfused (Hematocrit is at 26 -- bah, I could go way lower, but I guess it's better to be safe than sorry). Plus, those bags are liquid energy -- like the stimpacks from video games - "Let's get some!" Two bags represents 6 to 8 hours of the nurse coming in and out of the room.
4: All the usual stuff -- Antibiotics, hydration, etc...
Calculate the fact that the PICC line has only two lumens, and you have a long evening indeed -- We just finished a couple of ours ago.
So where does Fentanyl come into play? Where doesn't it! Well, I would fall asleep, the nurse would wake me up and ask me my current pain -- I'd usually say something like 4 or 5 (because the psin is usually high upon awakening). Then, I'd click the Fentanyl clicker. This would, in turn, lower my respiration and make me feel a heckova lot better.
But the respiration going lower wasn't a good thing if I was to be going to sleep -- ya gotta keep breathing in those dreams of yours!
Accordingly, they put be on oxygen durning the night.
Despite the respiration, I was in pain, so I continued to click away. Maybe I'm worse at night because there is no mental acuity/pain tradeoff when I am asleep...
Anyhow, I got a little Fentanyl lecture. Not a stern one, just a "Hey, don't be reckless with this stuff -- it's dangerous" lecture. In a way, it was quite disappointing, because I like this nurse and I most certainly do not use Fentanyl recreationally - I may joke about it, but it is really all about pain relief.
I recall a nurse answering a question from my mom on the suject of chemical dependency... The nurse replied, "As long you as take the drug as prescribed: to relieve pain, anxiety, or whatever it is indicated for. there is zero percent chance of addiction.
You may be able to tell my writing is being influenced by Fentanyl at present, but should that prevent me from taking more if I am in pain?
No Way!
P.S. - I finished assembling my metal praying mantis that Barbara got for me -- it's awesome!
[9:54am]
I just had to be instructed in general ass care and proper application of lotions. This is because of the previously mentioned problem in the rear. *sigh* How embarassing.
Friday, November 7, 2008
[11-07-08] Things are Great (Day +4)
[7:19am]
Let's see... time for yet another update on my general well-being and state of mind.
Physically, the mucositis has deteriorated to epic levels. I tried to take a ship of chilled milk this morning, but it literally scalded my mouth. Just out of curiosity, I pondered to myself how could something that is chilled taste like simmering water. Then, I proceeded to mouth the words "hot, hot, hot" as I'm fanning my mouth with my palm -- sign language for "I just ate a whole heap of Jalapeno Peppers," I'm sure.
But even without food/beverage, just repositioning my mouth alone can cause quite severe pain. Talking is very, very difficult. And, as Barbara has said, I've learned that certain words be only said through clenched teeth, for safety purposes.
Still, Fentanyl is my friend. And as Dan said in his previous email: "Hang in there bro...click......click....click...clickclickclick."
I couldn't agree more
However, there's the painful mental acuity vs. stupid and painfree tradeoff. To those used to my writing, it may be painfully obvious that I've been clicking the pain away. I keep nearly dozing off mid-sentence, so this may be an entry best kept short.
Then there's the myriad of skin problems. Now, just the phrase "skin problems" sounds like it can be treated with little more than daily moisturer and some SPF 10.
So let me rephrase that: "There's the myriad of skin/host rebellions with a scattered collection of skin terrorist splinter cells."
That's better. My chest looks like it's been subjected to an Iron Maiden with a sort of chicken pox.
But, I believe I went into a little detail yesterday, so I'll spare ye. Lets just say I've been vigilant!
Anyhow, nausea is at a low because I'm not eating much! Woohoo! Err, I take that back, completely. I was about to take pills while entering a blog entry, but nearly threw up. So, nausea's not completely gone. But I'm getting tired, so I'll just summarize like this: My symptoms are getting worse. My management of those symptoms has gone through the roof on both an emotional and a chemical level. In short: Things are great!
my Things are going smashingly well!
Let's see... time for yet another update on my general well-being and state of mind.
Physically, the mucositis has deteriorated to epic levels. I tried to take a ship of chilled milk this morning, but it literally scalded my mouth. Just out of curiosity, I pondered to myself how could something that is chilled taste like simmering water. Then, I proceeded to mouth the words "hot, hot, hot" as I'm fanning my mouth with my palm -- sign language for "I just ate a whole heap of Jalapeno Peppers," I'm sure.
But even without food/beverage, just repositioning my mouth alone can cause quite severe pain. Talking is very, very difficult. And, as Barbara has said, I've learned that certain words be only said through clenched teeth, for safety purposes.
Still, Fentanyl is my friend. And as Dan said in his previous email: "Hang in there bro...click......click....click...clickclickclick."
I couldn't agree more
However, there's the painful mental acuity vs. stupid and painfree tradeoff. To those used to my writing, it may be painfully obvious that I've been clicking the pain away. I keep nearly dozing off mid-sentence, so this may be an entry best kept short.
Then there's the myriad of skin problems. Now, just the phrase "skin problems" sounds like it can be treated with little more than daily moisturer and some SPF 10.
So let me rephrase that: "There's the myriad of skin/host rebellions with a scattered collection of skin terrorist splinter cells."
That's better. My chest looks like it's been subjected to an Iron Maiden with a sort of chicken pox.
But, I believe I went into a little detail yesterday, so I'll spare ye. Lets just say I've been vigilant!
Anyhow, nausea is at a low because I'm not eating much! Woohoo! Err, I take that back, completely. I was about to take pills while entering a blog entry, but nearly threw up. So, nausea's not completely gone. But I'm getting tired, so I'll just summarize like this: My symptoms are getting worse. My management of those symptoms has gone through the roof on both an emotional and a chemical level. In short: Things are great!
my Things are going smashingly well!
Thursday, November 6, 2008
[11-06-08] Day Three (Day +3)
[6:13pm]
Day 3 has come and gone for me, and despite my previous assertions, I believe that I was incorrect when I said that "Day 3" will be the most severe. From what nurses and doctors say alike, the worst days are those just before the time of "white blood cell recovery" - when your white blood cells begin to reproduce themselves normally.
Still, with all my personal hype built up, I have somewhat come to believe that day +3 is a milestone of sorts. So, in the name of journalistic integrity and whatnot, I am here to complain, yet again, about a new set of "experiences."
This morning started out like any other: with a shower. However, in order to shower-protect my newfound PIC catheter, I needed to figure out how to use their associated shower contraption. Not too tough -- imagine waterproof sleeves with belt strength cuffs at both ends. My arm was nice and warm.
In addition, I had to unplug myself from new and (EXTREMELY LOUD) health monitor. This is because they have me doped up on self-administered Fentanyl -- it makes sense, really, you don't want to give autreally bored individual an essentially limitless supply of Heroin without any precautions, do you?
So, that health monitor is yet one more thing that I have to worry about... plus the fact that the sensor is placed on my middle finger makes typing quite difficult.
After the shower is typically lunchtime: where someone walks into the room with some food. I like to see their expressions when I say, "Nah, I'm not eating food anymore. No thanks." They realy want to leave you the food -- as if their jobs depended on it. Oh well.
Not having to eat at all is quite liberating, in fact. Keeping certain foods down is a tremendous chore. Plus, often the food you can keep down tastes horrible or something. Then you puke it all up anyways, so all that effort was moot.
So, just skip the middleman and avoid eating entirely... say, until when your white counts start to recover.
As for the pills... yes, having some food in the stomach is necessary for digestion of certain pills.
I'd say: 1> Consider not taking said pill -- is it really important? or...
I'd say: 2> Ask from some Ativan before you take your pills -- it helps!
The other things I sped my time doing (religiously) is mouth care and skin care. I do my following skincare/mouthcare regimens every time I get up for the bathroom.
*** MOUTHCARE ***
1> Rince with saline solution and spit out. Sounds simple enough.
*** SKINCARE ***
1> Apply general moisturizer to dry areas on chest and back
2> Apply special anti-itch moisturizer to itchy areas on chest and back, armpits, and groin area.
3> Apply super-special cream to areas of skin with a rash due to repetitive motion of areas (arm pits, thighs, groins, etc...)
4> Apply ultra-special powder.
As much as I would hate to do so, #4 requires further elaboration if I am to be called a reporter of the facts. You could also label is as TMI;DR (Too much information; Don't Read).
Anyhow, VP-16 is VERY toxic for the skin. I mean, right now, my chest looks like it's been put through a blender. Huge purple streaks are visible, rashes, and spots of red dots (folliculitis) show up everywhere.
In addition, in areas with high friction, such as groin, or armpit, skin tissue has been known to slough off in chunks.
Let's just say that I'm fighting to prevent that from happening, it can be quite difficult, and that is where powder #4 comes into play.
I can see many making the following joke, so I'll just beat ya to it: For the sake....of...my skin...I must...powder my balls.
Lastly, I'd just like to say a few words about patient-controlled analgesic. They switched me from Dilaudid to Fentanyl which effective halt the pain related nausea! Awesome! No more choosing between having pain or being sick. That is all. Take care outside world.
Day 3 has come and gone for me, and despite my previous assertions, I believe that I was incorrect when I said that "Day 3" will be the most severe. From what nurses and doctors say alike, the worst days are those just before the time of "white blood cell recovery" - when your white blood cells begin to reproduce themselves normally.
Still, with all my personal hype built up, I have somewhat come to believe that day +3 is a milestone of sorts. So, in the name of journalistic integrity and whatnot, I am here to complain, yet again, about a new set of "experiences."
This morning started out like any other: with a shower. However, in order to shower-protect my newfound PIC catheter, I needed to figure out how to use their associated shower contraption. Not too tough -- imagine waterproof sleeves with belt strength cuffs at both ends. My arm was nice and warm.
In addition, I had to unplug myself from new and (EXTREMELY LOUD) health monitor. This is because they have me doped up on self-administered Fentanyl -- it makes sense, really, you don't want to give autreally bored individual an essentially limitless supply of Heroin without any precautions, do you?
So, that health monitor is yet one more thing that I have to worry about... plus the fact that the sensor is placed on my middle finger makes typing quite difficult.
After the shower is typically lunchtime: where someone walks into the room with some food. I like to see their expressions when I say, "Nah, I'm not eating food anymore. No thanks." They realy want to leave you the food -- as if their jobs depended on it. Oh well.
Not having to eat at all is quite liberating, in fact. Keeping certain foods down is a tremendous chore. Plus, often the food you can keep down tastes horrible or something. Then you puke it all up anyways, so all that effort was moot.
So, just skip the middleman and avoid eating entirely... say, until when your white counts start to recover.
As for the pills... yes, having some food in the stomach is necessary for digestion of certain pills.
I'd say: 1> Consider not taking said pill -- is it really important? or...
I'd say: 2> Ask from some Ativan before you take your pills -- it helps!
The other things I sped my time doing (religiously) is mouth care and skin care. I do my following skincare/mouthcare regimens every time I get up for the bathroom.
*** MOUTHCARE ***
1> Rince with saline solution and spit out. Sounds simple enough.
*** SKINCARE ***
1> Apply general moisturizer to dry areas on chest and back
2> Apply special anti-itch moisturizer to itchy areas on chest and back, armpits, and groin area.
3> Apply super-special cream to areas of skin with a rash due to repetitive motion of areas (arm pits, thighs, groins, etc...)
4> Apply ultra-special powder.
As much as I would hate to do so, #4 requires further elaboration if I am to be called a reporter of the facts. You could also label is as TMI;DR (Too much information; Don't Read).
Anyhow, VP-16 is VERY toxic for the skin. I mean, right now, my chest looks like it's been put through a blender. Huge purple streaks are visible, rashes, and spots of red dots (folliculitis) show up everywhere.
In addition, in areas with high friction, such as groin, or armpit, skin tissue has been known to slough off in chunks.
Let's just say that I'm fighting to prevent that from happening, it can be quite difficult, and that is where powder #4 comes into play.
I can see many making the following joke, so I'll just beat ya to it: For the sake....of...my skin...I must...powder my balls.
Lastly, I'd just like to say a few words about patient-controlled analgesic. They switched me from Dilaudid to Fentanyl which effective halt the pain related nausea! Awesome! No more choosing between having pain or being sick. That is all. Take care outside world.
Tuesday, November 4, 2008
[11-04-08] A Challenge! (Day +1)
[8:17am]
I feel that I have now familiarized with my arsenal: anti-emetics, Dilaudid, creams/ointments, mouthwash, applesauce, etc... I am ready for the challenge!
At first, of course, I felt quite helpless. I mean, I was limited to the drugs the doctors provide, the schedule of the nurses, and how my body reacts to the chemo... But now, I'm establishing a sort of routine. Each time I head to the bathroom, I apply various lotions and use the mouthwash. Each time my mouth hurts especially, or my stomach feels upset, I can click away on the clicker! Control! It is a good thing.
I suppose it's a time tested strategy for me: When the going gets tough, establish a routine. :P
Bah, I just vomited. All that effort getting my rice crispies soggy so that I could eat them... Oh well, I'll just eat more or something. It's routine -- what can ya do?
Funny... I can't talk right anymore :P I have to speak real slow -- like I'm drunk even.
[3:24pm]
They upped my Dilaudid because the mucositis got so severe. In the blink of an afternoon, I can't eay anything -- it just isn't possible. Even Jello is too abrasive! Popsicles: Your tongue has to scrape the ice off.
So, right now, I'm on a diet consisting entirely of Gatorade and water. Hmm, now is a perfect time to demonstrate the health benefits of non-alcoholic beer. A friend of mine's father, who is head of the pathology dept. at some big place, once told me that non-alcoholic beer is better for you than gatorade. The beer has starches, sugars, protein, and whatnot. So, they should prescribe me some non-alcoholic beer! My life may depend on it! :P
Seriously, though... they'll probably give me liquid nutrients or something... eck. I need to keep my stomach processing stuff!
Please excuse the fact that my posts may be a little less, uh, cerebral, than usual. :P
I feel that I have now familiarized with my arsenal: anti-emetics, Dilaudid, creams/ointments, mouthwash, applesauce, etc... I am ready for the challenge!
At first, of course, I felt quite helpless. I mean, I was limited to the drugs the doctors provide, the schedule of the nurses, and how my body reacts to the chemo... But now, I'm establishing a sort of routine. Each time I head to the bathroom, I apply various lotions and use the mouthwash. Each time my mouth hurts especially, or my stomach feels upset, I can click away on the clicker! Control! It is a good thing.
I suppose it's a time tested strategy for me: When the going gets tough, establish a routine. :P
Bah, I just vomited. All that effort getting my rice crispies soggy so that I could eat them... Oh well, I'll just eat more or something. It's routine -- what can ya do?
Funny... I can't talk right anymore :P I have to speak real slow -- like I'm drunk even.
[3:24pm]
They upped my Dilaudid because the mucositis got so severe. In the blink of an afternoon, I can't eay anything -- it just isn't possible. Even Jello is too abrasive! Popsicles: Your tongue has to scrape the ice off.
So, right now, I'm on a diet consisting entirely of Gatorade and water. Hmm, now is a perfect time to demonstrate the health benefits of non-alcoholic beer. A friend of mine's father, who is head of the pathology dept. at some big place, once told me that non-alcoholic beer is better for you than gatorade. The beer has starches, sugars, protein, and whatnot. So, they should prescribe me some non-alcoholic beer! My life may depend on it! :P
Seriously, though... they'll probably give me liquid nutrients or something... eck. I need to keep my stomach processing stuff!
Please excuse the fact that my posts may be a little less, uh, cerebral, than usual. :P
Thursday, October 30, 2008
[10-30-08] Barbara's Update - ICU
8:55pm Thursday
It is now 8:55, and Marie and I are waiting in the "Family Waiting Room" next to the ICU, an overcrowded, noisy, unpleasant place with loud conversation (most in Spanish) and unruly children. Austin is in room E260. I was able to speak to him for a moment. He appears calm, and his fever feels lower. The last I heard it reported was about 102. His room has a busy influx of nurses and doctors, so he is getting a lot of attention. At this point, his blood pressure is a matter of concern - it is in the vicinity of 80/40. However, his pulse is described as very strong.
The procedure as far as I know it now:
1. Install an arterial blood pressure monitor. This gives better BP monitoring.
2. Remove the Hickman catheter. This is what they suspect is causing an infection. When they remove it, there are signs they will be able to see easily indicating if an infection is underway. However, if they see nothing, that is not proof there is no infection.
3. Install a new port. This one will be in a vein near an elbow. (uncertain if I heard this correctly.)
4. Administer antibiotics - they have been doing so a couple of days already. Cultures are in progress, and if any are positive that will assist in optimizing the antibiotic.
5. Delay Cytoxan a day. Stay in ICU for at least a day.
We are worried of course. An infection for any patient with a near-zero white cell count is a serious matter. They have not said for certain that they believe this is a bacterial infection instead of a chemo reaction, but it appears that they must at least assume that is the case until proven otherwise.
Updates to be added, hourly if necessary.
------
Update, 11:05pm Thursday
We were able to visit him finally. Status:
1. Hickman catheter is out. They saw no signs of infection on the catheter, but the site seems inflamed, so they feel that is likely the cause.
2. An arterial BP monitor is installed in his left arm. Doing this, they found his central BP to be normal. That shows that the fever was causing his peripheral BP to vary. That is good to know, and is presumably good news.
3. He has a new central port installed in his neck. Wow, that was fast. It is on his right side, and I get the impression that it is somewhat annoying for him.
4. His fever is closer to 101 now, going down slowly. He says he feels tired and wants to get some sleep.
------
Update, 0900am Friday
It is frustrating trying to get through to the ICU by phone. Only on the 5th time did I get connected to the right room and the phone was answered. The nurse handed the phone to Austin. When I asked him how he was doing, he said "Not great." His temperature is 38.3C which is 100.9F. That is considered to be a low fever. He said his temperature went up again, but if it is 100.9 now, it must have fallen again - or I got the wrong temperature from him. It was a very short call. He also reports that he is uncomfortable and has not eaten anything.
---------
Update, 10:20am Friday
Phone call from Marie. She reports that the doctors have seen Austin, and that he is "doing much better" and that he may move back down to his BMT unit later this afternoon.
It is now 8:55, and Marie and I are waiting in the "Family Waiting Room" next to the ICU, an overcrowded, noisy, unpleasant place with loud conversation (most in Spanish) and unruly children. Austin is in room E260. I was able to speak to him for a moment. He appears calm, and his fever feels lower. The last I heard it reported was about 102. His room has a busy influx of nurses and doctors, so he is getting a lot of attention. At this point, his blood pressure is a matter of concern - it is in the vicinity of 80/40. However, his pulse is described as very strong.
The procedure as far as I know it now:
1. Install an arterial blood pressure monitor. This gives better BP monitoring.
2. Remove the Hickman catheter. This is what they suspect is causing an infection. When they remove it, there are signs they will be able to see easily indicating if an infection is underway. However, if they see nothing, that is not proof there is no infection.
3. Install a new port. This one will be in a vein near an elbow. (uncertain if I heard this correctly.)
4. Administer antibiotics - they have been doing so a couple of days already. Cultures are in progress, and if any are positive that will assist in optimizing the antibiotic.
5. Delay Cytoxan a day. Stay in ICU for at least a day.
We are worried of course. An infection for any patient with a near-zero white cell count is a serious matter. They have not said for certain that they believe this is a bacterial infection instead of a chemo reaction, but it appears that they must at least assume that is the case until proven otherwise.
Updates to be added, hourly if necessary.
------
Update, 11:05pm Thursday
We were able to visit him finally. Status:
1. Hickman catheter is out. They saw no signs of infection on the catheter, but the site seems inflamed, so they feel that is likely the cause.
2. An arterial BP monitor is installed in his left arm. Doing this, they found his central BP to be normal. That shows that the fever was causing his peripheral BP to vary. That is good to know, and is presumably good news.
3. He has a new central port installed in his neck. Wow, that was fast. It is on his right side, and I get the impression that it is somewhat annoying for him.
4. His fever is closer to 101 now, going down slowly. He says he feels tired and wants to get some sleep.
------
Update, 0900am Friday
It is frustrating trying to get through to the ICU by phone. Only on the 5th time did I get connected to the right room and the phone was answered. The nurse handed the phone to Austin. When I asked him how he was doing, he said "Not great." His temperature is 38.3C which is 100.9F. That is considered to be a low fever. He said his temperature went up again, but if it is 100.9 now, it must have fallen again - or I got the wrong temperature from him. It was a very short call. He also reports that he is uncomfortable and has not eaten anything.
---------
Update, 10:20am Friday
Phone call from Marie. She reports that the doctors have seen Austin, and that he is "doing much better" and that he may move back down to his BMT unit later this afternoon.
[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)
Wednesday, October 29, 2008
[10-29-08] Day of Rest (Day -5)
[10:54am]
It's funny how they call non-chemo days: "day of rest" -- every day is a day of rest. You get bags and bags and bags of medicine each and every day, except add a few bags for those chemo days. Oh well, maybe if I were adversely effected by the chemo a bit more I'd have a different idea. I love tempting fate. :P
I'm still in a double room -- they told me that they'd move me in a single when my counts were too low. Darn it! I really want one of those exercise bikes, but there's no room for one in a double room. And, of course, once my counts are down, would I really be up for a bike ride?
Hmm... If you can ride the bike, then your counts aren't down and you don't need an isolation room. If your counts are down, then you can get a single room to ride the bike, but you'd be too tired to ride the bike. Almost a catch-22.
So, here's my schedule until transplant:
Day -5: Day of Rest
Day -4: Whopping dose of VP-16
Day -3: Day of rest
Day -2: Whopping dose of my dreaded nemesis: Cytoxan! Noooo
Day -1: Day of Rest
Day 0: Transplant (followed by 2-3 weeks of recovery)
The interesting thing is that my roommate seems to be going through (almost) the same regimen (without the Gemcitabine & Navelbine). Today he gets his transplant, and the day after he is discharged! Is he getting lower doses that me? Is his insurance inferior? I know G&N were pretty hardcore, but not enough to justify an extra 2-3 weeks for recovery!
He does have non-hodgkin's lymphoma -- maybe that's different.
On another note, I had BACON today! So I must be feeling better. Darn. I want that bike! :P
It's funny how they call non-chemo days: "day of rest" -- every day is a day of rest. You get bags and bags and bags of medicine each and every day, except add a few bags for those chemo days. Oh well, maybe if I were adversely effected by the chemo a bit more I'd have a different idea. I love tempting fate. :P
I'm still in a double room -- they told me that they'd move me in a single when my counts were too low. Darn it! I really want one of those exercise bikes, but there's no room for one in a double room. And, of course, once my counts are down, would I really be up for a bike ride?
Hmm... If you can ride the bike, then your counts aren't down and you don't need an isolation room. If your counts are down, then you can get a single room to ride the bike, but you'd be too tired to ride the bike. Almost a catch-22.
So, here's my schedule until transplant:
Day -5: Day of Rest
Day -4: Whopping dose of VP-16
Day -3: Day of rest
Day -2: Whopping dose of my dreaded nemesis: Cytoxan! Noooo
Day -1: Day of Rest
Day 0: Transplant (followed by 2-3 weeks of recovery)
The interesting thing is that my roommate seems to be going through (almost) the same regimen (without the Gemcitabine & Navelbine). Today he gets his transplant, and the day after he is discharged! Is he getting lower doses that me? Is his insurance inferior? I know G&N were pretty hardcore, but not enough to justify an extra 2-3 weeks for recovery!
He does have non-hodgkin's lymphoma -- maybe that's different.
On another note, I had BACON today! So I must be feeling better. Darn. I want that bike! :P
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!
Monday, October 27, 2008
[10-27-08] The Early Bird
[2:37pm]
Yesterday was crazy.
It started with my dose of Gemcitabine and Navelbine -- both drugs that I tolerated relatively well last time... well, except for a headache.
Yesterday started out no differently, but it quickly turned South. It started out with some pretty bad bathroom-related problems, then ended up turning into some pretty annoying nausea and general icky feeling.
At around 8pm, the nausea got worse and I could feel that familiar burning sensation in my eyes -- I knew I had a fever. The temperature read 100.4, so I decided to take some Tylenol and check again in 20 minutes or so. The second reading was 101.4, so we decided to head to Stanford.
The thing is: I knew that this fever was due to the Gemcitabine/NAvelbine -- in fact, my nurse told me to ignore any fevers that I may get for the first dose of these two drugs. But, since I am so close to the transplant time, it's better safe than sorry.
We walked right into the BMT unit and I presented myself. I told the nurse that I was instructed to report to the BMT unit if I had a fever for my second dose of this chemo, and that it was probably caused by the chemo. Apparently, I should've called first. Strange, I thought they explicitly that I didn't need to call first -- "Do not pass go, head straight to BMT ward."
But that wasn't the first mistake I made this evening. I also shouldn't have taken the Tylenol -- since my fever could be naturally be higher than it was at present. Then the nurse asked: "Where's your mask?" Apparently, I was supposed to be wearing it this week, even though my white counts were perfectly fine. Ack! Oh well...
So, the nurse decided to admit me. She also had to call the attending physician -- who had to drive from her home in San Francisco at 10:30pm -- to evaluate me. By then my fever was 102.0.
They hooked me up on various fluids and anti-biotics, and re-checked my vitals every 20 minutes or so. I also had more Tylenol, but my fever would not budge one bit. In addition, my nausea seemed to get worse along with the fever -- I couldn't lie down because that would make me feel sick. Mostly, I tried not to move. Then, my mom went home to collect my belongings and bring them to the hospital.
Things got even more frantic when they noticed that my blood pressure had dropped to 86/40, when it was normally 125/70. They restricted me to my bed and kept asking whether the room was spinning or that I felt dizzy. I only felt a bit dizzy when I stood up, but I did feel a bit weird. Then more bags of stuff were brought in and I had my vitals all throughout. They also did some blood cultures and urinanalysis.
Long story short: it was a very tough night. I had an interruption every 15 minutes or so -- it made sleep quite difficult.
Fortunately, my fever broke around 9:00am this morning and I feel much better. My blood pressure is normal. All that's left is a food-phobia and headache. By food-phobia, I mean that the mere concept of eating real food makes me feel a bit sick. Get this: I had eggs and bacon this morning, and I didn't eat anything, including the bacon! You know there's something wrong when I don't eat my beloved bacon.
So, all I've been eating today is Jello and Apple Sauce. I'm actually quite hungry, but what can I do?
The strange thing is that I've never had an aversion to food, even throughout all the chemo I've had. Why start now? Gemcitabine and Navelbine are truly vicious drugs.
So, anyhow, I've been admitted into the BMT ward and will be placed in my isolation room later today. My in-patient BMT starts early!
I think to myself: After last night, I'm in for quite a tough ride. It's only going to get worse from here on out.
It brings to mind what my doctor said when he went on rounds today. He told me about how they like to do psychiatric consults early in the BMT process, so that "you can answer coherently because you wont be on a bunch of pain medications yet." So it looks like I can expect a level of pain that would require a lot of gnarly medications. Eep!
[5:53pm]
Mwa ha ha! Large interweb pipes; Austin happy.
Yesterday was crazy.
It started with my dose of Gemcitabine and Navelbine -- both drugs that I tolerated relatively well last time... well, except for a headache.
Yesterday started out no differently, but it quickly turned South. It started out with some pretty bad bathroom-related problems, then ended up turning into some pretty annoying nausea and general icky feeling.
At around 8pm, the nausea got worse and I could feel that familiar burning sensation in my eyes -- I knew I had a fever. The temperature read 100.4, so I decided to take some Tylenol and check again in 20 minutes or so. The second reading was 101.4, so we decided to head to Stanford.
The thing is: I knew that this fever was due to the Gemcitabine/NAvelbine -- in fact, my nurse told me to ignore any fevers that I may get for the first dose of these two drugs. But, since I am so close to the transplant time, it's better safe than sorry.
We walked right into the BMT unit and I presented myself. I told the nurse that I was instructed to report to the BMT unit if I had a fever for my second dose of this chemo, and that it was probably caused by the chemo. Apparently, I should've called first. Strange, I thought they explicitly that I didn't need to call first -- "Do not pass go, head straight to BMT ward."
But that wasn't the first mistake I made this evening. I also shouldn't have taken the Tylenol -- since my fever could be naturally be higher than it was at present. Then the nurse asked: "Where's your mask?" Apparently, I was supposed to be wearing it this week, even though my white counts were perfectly fine. Ack! Oh well...
So, the nurse decided to admit me. She also had to call the attending physician -- who had to drive from her home in San Francisco at 10:30pm -- to evaluate me. By then my fever was 102.0.
They hooked me up on various fluids and anti-biotics, and re-checked my vitals every 20 minutes or so. I also had more Tylenol, but my fever would not budge one bit. In addition, my nausea seemed to get worse along with the fever -- I couldn't lie down because that would make me feel sick. Mostly, I tried not to move. Then, my mom went home to collect my belongings and bring them to the hospital.
Things got even more frantic when they noticed that my blood pressure had dropped to 86/40, when it was normally 125/70. They restricted me to my bed and kept asking whether the room was spinning or that I felt dizzy. I only felt a bit dizzy when I stood up, but I did feel a bit weird. Then more bags of stuff were brought in and I had my vitals all throughout. They also did some blood cultures and urinanalysis.
Long story short: it was a very tough night. I had an interruption every 15 minutes or so -- it made sleep quite difficult.
Fortunately, my fever broke around 9:00am this morning and I feel much better. My blood pressure is normal. All that's left is a food-phobia and headache. By food-phobia, I mean that the mere concept of eating real food makes me feel a bit sick. Get this: I had eggs and bacon this morning, and I didn't eat anything, including the bacon! You know there's something wrong when I don't eat my beloved bacon.
So, all I've been eating today is Jello and Apple Sauce. I'm actually quite hungry, but what can I do?
The strange thing is that I've never had an aversion to food, even throughout all the chemo I've had. Why start now? Gemcitabine and Navelbine are truly vicious drugs.
So, anyhow, I've been admitted into the BMT ward and will be placed in my isolation room later today. My in-patient BMT starts early!
I think to myself: After last night, I'm in for quite a tough ride. It's only going to get worse from here on out.
It brings to mind what my doctor said when he went on rounds today. He told me about how they like to do psychiatric consults early in the BMT process, so that "you can answer coherently because you wont be on a bunch of pain medications yet." So it looks like I can expect a level of pain that would require a lot of gnarly medications. Eep!
[5:53pm]
Mwa ha ha! Large interweb pipes; Austin happy.
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 22, 2008
[9-22-08] Cytoxan Victory! ... Catheter Worries
[11:40am]
You heard it here first, folks: Operation Cytoxan is a go!
Making it here, to this point, has felt like the admissions process into a prestigious university... Like a student waiting for a final exam to be graded, I waited today for my x-ray results. If they are good, I get it. Simple as that. And I got in.
But there was more to it than that, of course. All the tests and exams and appointments to get into the BMT program... they're a part of this too. Since there'd be no Cytoxan unless they actually planned on going through with the BMT.
So, here I am, in the bed, getting hydrated. It's great to put this catheter to use! And the beds here, they are beyond comfortable... I'm talking *space-age* mattresses. If you get up, to reposition yourself, the mattress automatically finds the points on your back with the greatest pressure and "softens" them. Points with the least pressure are "filled." The end result: ultimate comfort.
I'm going to sleep well tonight.
I have a roommate named Nick -- he has Myeloid Leukemia and has already been through the Allogeneic transplant. He's here for other reasons, something about liver problems.
Anyhow, he seems like a cool guy. He's around my age. We just talked about movies, video games, and more video games. Kinda reminds me of T.J.
[12:30pm]
I just got my lab results back:
WBC: 3.6
Neutrophil %: 65.5
Hemoglobin: 9.8!
Hematocrit: 28.3
absolute neutrophil count: 2360 (Not neutropenic)
This impressive thing here is my hemoglobin is at a record low of 9.8! My previous lowest was at 10.8, near the end of Stanford V. At that time, I was exhausted! Climbing up a flight of stairs left me very winded.
So, why then am I feeling pretty energetic? Has my body just gotten used to low oxygen being delivered?
My hematocrit is low as well. At 28.3, I am just 0.3 higher than the value required for a blood transfusion. My nurse tells me I may receive one at the end of the night.
Sheesh! You'd think I have something wrong with me, or something. Blood Transfusion? Bah, I'd be fine without one. Well, maybe not... ::visions self when hemoglobin is at 6:: Maybe it's best to prevent that.
[2:40pm]
Earlier, they performed the following procedures:
1: Drew blood from catheter
2: Hooked catheter to saline IV pump
Now, my nurse comes in with the pre-meds (with 30 mins. to chemo), and she notices that there is no blood return with the catheter. She tries and tries... no blood return. Now she's sending for someone else to check.
I hope they do not have to perform surgery again, and delay chemo further. Chemo: So close, yet so far away. ::worry::
[4:37pm]
Nurse came by and tried again to no avail. Then she tried this thing called TPA that is supposed to remove any blod clots or anything. 30 minutes later...still nothing. Now she's getting a doctor. ::more worry::
[4:53pm]
Nurse just came in and told me that she was going to administer the chemo peripherally; I'm going to get stuck by a needle. Stupid catheter. All this work to clean it and maintain it for nothing. She's scheduling an appointment with radiology surgeons to fix it... says it will probably be non-surgical.
But still: More appointments, more procedures, more stress. At least I'm getting chemo. But now I have to stress about getting this catheter in order so that apheresis isn't delayed. Also, what about the neupogen? I've got to get that by tomorrow, but I don't even know if Walgreens has it yet.
::stress::
[10:57pm]
Chemo is done and I feel great! No nausea or anything. The dose was 8.5g -- a little less than I expected, but still good. My new nurse got the catheter working after asking me to cough a few times. It looks like my catheter will be difficult for the next few months. *sigh* Oh well, at least I got my IV needle out.
Nite!
You heard it here first, folks: Operation Cytoxan is a go!
Making it here, to this point, has felt like the admissions process into a prestigious university... Like a student waiting for a final exam to be graded, I waited today for my x-ray results. If they are good, I get it. Simple as that. And I got in.
But there was more to it than that, of course. All the tests and exams and appointments to get into the BMT program... they're a part of this too. Since there'd be no Cytoxan unless they actually planned on going through with the BMT.
So, here I am, in the bed, getting hydrated. It's great to put this catheter to use! And the beds here, they are beyond comfortable... I'm talking *space-age* mattresses. If you get up, to reposition yourself, the mattress automatically finds the points on your back with the greatest pressure and "softens" them. Points with the least pressure are "filled." The end result: ultimate comfort.
I'm going to sleep well tonight.
I have a roommate named Nick -- he has Myeloid Leukemia and has already been through the Allogeneic transplant. He's here for other reasons, something about liver problems.
Anyhow, he seems like a cool guy. He's around my age. We just talked about movies, video games, and more video games. Kinda reminds me of T.J.
[12:30pm]
I just got my lab results back:
WBC: 3.6
Neutrophil %: 65.5
Hemoglobin: 9.8!
Hematocrit: 28.3
absolute neutrophil count: 2360 (Not neutropenic)
This impressive thing here is my hemoglobin is at a record low of 9.8! My previous lowest was at 10.8, near the end of Stanford V. At that time, I was exhausted! Climbing up a flight of stairs left me very winded.
So, why then am I feeling pretty energetic? Has my body just gotten used to low oxygen being delivered?
My hematocrit is low as well. At 28.3, I am just 0.3 higher than the value required for a blood transfusion. My nurse tells me I may receive one at the end of the night.
Sheesh! You'd think I have something wrong with me, or something. Blood Transfusion? Bah, I'd be fine without one. Well, maybe not... ::visions self when hemoglobin is at 6:: Maybe it's best to prevent that.
[2:40pm]
Earlier, they performed the following procedures:
1: Drew blood from catheter
2: Hooked catheter to saline IV pump
Now, my nurse comes in with the pre-meds (with 30 mins. to chemo), and she notices that there is no blood return with the catheter. She tries and tries... no blood return. Now she's sending for someone else to check.
I hope they do not have to perform surgery again, and delay chemo further. Chemo: So close, yet so far away. ::worry::
[4:37pm]
Nurse came by and tried again to no avail. Then she tried this thing called TPA that is supposed to remove any blod clots or anything. 30 minutes later...still nothing. Now she's getting a doctor. ::more worry::
[4:53pm]
Nurse just came in and told me that she was going to administer the chemo peripherally; I'm going to get stuck by a needle. Stupid catheter. All this work to clean it and maintain it for nothing. She's scheduling an appointment with radiology surgeons to fix it... says it will probably be non-surgical.
But still: More appointments, more procedures, more stress. At least I'm getting chemo. But now I have to stress about getting this catheter in order so that apheresis isn't delayed. Also, what about the neupogen? I've got to get that by tomorrow, but I don't even know if Walgreens has it yet.
::stress::
[10:57pm]
Chemo is done and I feel great! No nausea or anything. The dose was 8.5g -- a little less than I expected, but still good. My new nurse got the catheter working after asking me to cough a few times. It looks like my catheter will be difficult for the next few months. *sigh* Oh well, at least I got my IV needle out.
Nite!
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.
Subscribe to:
Posts (Atom)
