[5:15pm]
I am out. Instead of 2-3 weeks of living next to the Stanford hospital, I have been released after only a week. Right now, I am typing these words at my sister's house. Tomorrow I gather my belongings and move to Berkeley... to home. I've been a nomad since the beginning of September, and it is quite nice to finally be able to drop anchor.
Now I can finally start picking up the pieces and get back on track. True, there's probably radiation down the road... but the hard part is over now. What matters is that I'll be able to remain in school while undergoing radiation. Moving forward in life.
On a completely different subject...
They say I can take my mask off after ten days... and I think to myself: what if I take it off now? All my other limitations seems to have been based on strict "guidelines" that were later relaxed. Perhaps, through almost a year of these treatments, I have learned the limitations of my own body. Perhaps I am qualified to make my own judgments on the matter.
The truth is: I am just tired. I am done making exceptions and limiting my life experiences due to this cancer. I need to return to normal.
And if someone tried to impose one of those limitations... well, maybe I just wont let them. For example, I am supposed to get a bone marrow biopsy 3 months from day 0, then 6 months, then once a year for at least five years. Maybe I just wont permit them. What are they going to do: send me to prison? Plus, once the cancer is in my marrow, aren't I automatically Stage IV? Perhaps it's better not to know if it's in the marrow.
It's one of the ways I've been changed through all of this: I am perhaps a bit more sefish and defiant. Life is short and I am going to minimize any suffering. If I have a choice, I am going to do things my way!
Showing posts with label SCT. Show all posts
Showing posts with label SCT. Show all posts
Tuesday, November 25, 2008
Sunday, November 23, 2008
[11-23-08] Almost Normal
[4:10pm]
Blog. Blog, blog blog, blog blog blog blog. Blog? Blog.
Good news! I get to leave the Stanford area on Tuesday! Apparently, my counts and whatnot are so good that I only need monitoring or whatever for one week instead of two. So I get to see my family and new home in Berkeley quite a lot sooner than anticipated!
In addition, typically patients that have graduated from the "BMT ward" to "Cancer Clinic" no longer have to wear their masks in most situations. So, I could automatically infer that I will no longer have to wear my mask after Tuesday (which I will).
More good news! The mouth pain has gotten considerably better and I am capable of prolonged conversation and the careful consumption of solid foods! Unfortunately, most solid foods taste terrible! Chemo has not affected my taste buds in the past, but, at present, it is ridiculous! In addition, my skin is healing and my energy levels are steadily rising. Also, sleep is getting better and my quality of life is improving rapidly.
In other words, things are great and getting better. It looks like I've officially survived the BMT. Now, the question of radiation...
Bah, I'll think of that later... As for now, I'm going to watch a bunch of movies with Liz until the new episode of 24 comes out. :P
Blog. Blog, blog blog, blog blog blog blog. Blog? Blog.
Good news! I get to leave the Stanford area on Tuesday! Apparently, my counts and whatnot are so good that I only need monitoring or whatever for one week instead of two. So I get to see my family and new home in Berkeley quite a lot sooner than anticipated!
In addition, typically patients that have graduated from the "BMT ward" to "Cancer Clinic" no longer have to wear their masks in most situations. So, I could automatically infer that I will no longer have to wear my mask after Tuesday (which I will).
More good news! The mouth pain has gotten considerably better and I am capable of prolonged conversation and the careful consumption of solid foods! Unfortunately, most solid foods taste terrible! Chemo has not affected my taste buds in the past, but, at present, it is ridiculous! In addition, my skin is healing and my energy levels are steadily rising. Also, sleep is getting better and my quality of life is improving rapidly.
In other words, things are great and getting better. It looks like I've officially survived the BMT. Now, the question of radiation...
Bah, I'll think of that later... As for now, I'm going to watch a bunch of movies with Liz until the new episode of 24 comes out. :P
Thursday, November 20, 2008
[11-20-08] Returning to the real world
[9:29am]
Here I am, sitting in the good 'ol ITA (Infusion Treatment Area). It makes me feel like I've come full circle: Cancer Center (Stanford V) -> Hospital (ICE) -> Cancer Center (Pre-BMT) -> Hospital (BMT). But that's really not the case -- it's just the next part of a new phase.
But I'm fine with that. Well, not entirely. It's really hard not to get overwhelmed by all of this; it takes strength just to get up and do stuff. I'm sure that will change in a week or so, but it's hard to think about the future when you feel the present so much.
Yesterday, my mom and I got established in our new little apartment. It's a compact place with all the standard necessities that you'd find in a small studio (except that the bedroom has two twin beds).
It is a wonderful, wonderful thing to walk from one room to another! A bed in one room, and your computer in another -- how profound! There's room to pace! I am not confined! The only problem is that the bathroom has that "hospital smell" that I've learned to despise. They must use the same cleaners or something; I need to get an air freshener.
Sleep's been really, really difficult. I have this hot/cold problem that I've just started to figure out. The problem starts like this: I am cold, so I move and adjust the blanket to cover me more. After a few seconds, this new adjustment has me way too hot, so I pull the blanket away. Rinse; Repeat.
I believe this is because I am so pathetically out of shape. If I get up to do anything, I break a sweat and get hot. This is why I spent most of my time in the hospital shirtless -- otherwise I'd keep removing my shirt and putting it back on... a blanket it quicker.
Anyhow, so my "thermal core" overheats when I do pretty much anything -- including a simple blanket adjustment. This is why I go from cold to hot so quickly.
So, my new sleep strategy is two-fold: 1>Take Ambien, and 2> Make all blanket adjustments very slowly, and with a minimal amount of effort. It takes practice.
Perhaps the best strategy is just to exercise more.
Here I am, sitting in the good 'ol ITA (Infusion Treatment Area). It makes me feel like I've come full circle: Cancer Center (Stanford V) -> Hospital (ICE) -> Cancer Center (Pre-BMT) -> Hospital (BMT). But that's really not the case -- it's just the next part of a new phase.
But I'm fine with that. Well, not entirely. It's really hard not to get overwhelmed by all of this; it takes strength just to get up and do stuff. I'm sure that will change in a week or so, but it's hard to think about the future when you feel the present so much.
Yesterday, my mom and I got established in our new little apartment. It's a compact place with all the standard necessities that you'd find in a small studio (except that the bedroom has two twin beds).
It is a wonderful, wonderful thing to walk from one room to another! A bed in one room, and your computer in another -- how profound! There's room to pace! I am not confined! The only problem is that the bathroom has that "hospital smell" that I've learned to despise. They must use the same cleaners or something; I need to get an air freshener.
Sleep's been really, really difficult. I have this hot/cold problem that I've just started to figure out. The problem starts like this: I am cold, so I move and adjust the blanket to cover me more. After a few seconds, this new adjustment has me way too hot, so I pull the blanket away. Rinse; Repeat.
I believe this is because I am so pathetically out of shape. If I get up to do anything, I break a sweat and get hot. This is why I spent most of my time in the hospital shirtless -- otherwise I'd keep removing my shirt and putting it back on... a blanket it quicker.
Anyhow, so my "thermal core" overheats when I do pretty much anything -- including a simple blanket adjustment. This is why I go from cold to hot so quickly.
So, my new sleep strategy is two-fold: 1>Take Ambien, and 2> Make all blanket adjustments very slowly, and with a minimal amount of effort. It takes practice.
Perhaps the best strategy is just to exercise more.
Wednesday, November 19, 2008
[11-19-08] Freedom (Day +16)
[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?
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?
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.
Monday, November 17, 2008
[11-17-08] Sweet Sweetness! (Day +14)
[Counts]
WBC:20.2
HCT:30.6
PLT:46,000
[12:34pm]
Everything has changed in an instant. In my last angsty posting, Barbara posted a comment recommending that I try a local mouth pain-relief product, such as Oraljel, to combat my persistent mouth pain. At the time, I was communicating with Liz through the computer, or a series of grunts and awkward hand gestures -- it was the best I could do.
She saw Barbara's comment and immediately offered to drive to the nearest Walgreens to acquire said product. When she returned I applied the product and found instant relief. For the first time in what felt like forever, I was actually talking! Liz and I spend the next few hours talking about stuff -- it was a beautiful thing.
Naturally, everything changed after that. I no longer need any pain medication (Fentanyl) and I can actually eat my meals! That is the two major things keeping me in the Hospital; now it could be as little as 48 hours before I am discharged.
The downside is that, to leave the hospital, one needs to be better. If one is better, they no longer need a single room. So, they moved me to a double with a caregiver that, within minutes, was preventing my mom and I from watching a much anticipated episode of House. Sure, I get wanting to sleep -- 0but it's the middle of the day, when else can I watch some T.V.? With nothing much to do and a lack of sleep haunting me from last night, I decided to get some blissful sleep as well. I was forced awake with loud talking.
But I wasn't upset; this is what happens in double rooms in hospitals. Just don't force double standards on the patients around you.
Perhaps I'm being unreasonable, but I thought our volume level was minimal... and I was really looking forward to watching that episode. Plus, when can we watch it now? Don't they now have precedence to request that we not watch it at any time?
Ok, excuse the rant.
In conclusion, things are going well. I'm going to try to eat well and whatnot to get out of here soon!
WBC:20.2
HCT:30.6
PLT:46,000
[12:34pm]
Everything has changed in an instant. In my last angsty posting, Barbara posted a comment recommending that I try a local mouth pain-relief product, such as Oraljel, to combat my persistent mouth pain. At the time, I was communicating with Liz through the computer, or a series of grunts and awkward hand gestures -- it was the best I could do.
She saw Barbara's comment and immediately offered to drive to the nearest Walgreens to acquire said product. When she returned I applied the product and found instant relief. For the first time in what felt like forever, I was actually talking! Liz and I spend the next few hours talking about stuff -- it was a beautiful thing.
Naturally, everything changed after that. I no longer need any pain medication (Fentanyl) and I can actually eat my meals! That is the two major things keeping me in the Hospital; now it could be as little as 48 hours before I am discharged.
The downside is that, to leave the hospital, one needs to be better. If one is better, they no longer need a single room. So, they moved me to a double with a caregiver that, within minutes, was preventing my mom and I from watching a much anticipated episode of House. Sure, I get wanting to sleep -- 0but it's the middle of the day, when else can I watch some T.V.? With nothing much to do and a lack of sleep haunting me from last night, I decided to get some blissful sleep as well. I was forced awake with loud talking.
But I wasn't upset; this is what happens in double rooms in hospitals. Just don't force double standards on the patients around you.
Perhaps I'm being unreasonable, but I thought our volume level was minimal... and I was really looking forward to watching that episode. Plus, when can we watch it now? Don't they now have precedence to request that we not watch it at any time?
Ok, excuse the rant.
In conclusion, things are going well. I'm going to try to eat well and whatnot to get out of here soon!
Friday, November 14, 2008
[11-14-08] The System is Down (Day +11)
[6:32pm]
Here's my counts:
WBC: 6.9 (1.3 yesterday)
Hematocrit: 28.6 (29.0 yesterday)
Platelets: 20,000 (16,000 yesterday)
This is going to be a short post because... duhn duhn DUHN... THE INTERNET IS OUT!!! NOOOOOOOOOOOOOOOooooooooo
Something went awry with the medical network yesterday. Nurses were waiting in line to use the printer, because they had to record everything on paper. They would no longer use their fancy "vitals machine". (which combines an automated blood pressure cuff, a digital thermometer, an O2 Saturation probe, and a computer to automate, record, and transmit the information down those network pipes.)
In other words, if you hit the call button in an effort to get more water, be prepared to repeat your request and wait several hours. Well, that's not entirely true -- some nurses adapt better than others.
What is interesting about this network disaster is that the free public wireless was working fine throughout the day. The next day, when they finally fix the network, the public wireless fails utterly. And that's where I'm at -- I've been on the phone with the techs -- they say it should be fixed by tomorrow.
In the meantime, I've been using some unreliable 1-bar public wireless from (I believe) a hospital nearby. It's a bit frustrating.
So, here is a bit of news for the day:
Mouth is finally beginning to heal! Maybe tomorrow I'll be able to speak like a real human!
Continuous portion of pain meds discontinued (clicking on-demand still works)! Earlier today, they decided to cut the continuous portion in half to ween me off the Fentanyl. When it was revealed that my problems going #1 were due to the continuous dose, I jumped on the idea of removing it entirely.
I may be discharged early -- the doctors pointed to the 18th on the calendar. However, some of the requirements were that:
1:I had no pain so severe that pain management was necessary (so mouth gets better). Alternative Interpretation: No dependence on pain meds.
2:Able to eat! (Again, mouth gets better)
3:No Fever
That is all.
Here's my counts:
WBC: 6.9 (1.3 yesterday)
Hematocrit: 28.6 (29.0 yesterday)
Platelets: 20,000 (16,000 yesterday)
This is going to be a short post because... duhn duhn DUHN... THE INTERNET IS OUT!!! NOOOOOOOOOOOOOOOooooooooo
Something went awry with the medical network yesterday. Nurses were waiting in line to use the printer, because they had to record everything on paper. They would no longer use their fancy "vitals machine". (which combines an automated blood pressure cuff, a digital thermometer, an O2 Saturation probe, and a computer to automate, record, and transmit the information down those network pipes.)
In other words, if you hit the call button in an effort to get more water, be prepared to repeat your request and wait several hours. Well, that's not entirely true -- some nurses adapt better than others.
What is interesting about this network disaster is that the free public wireless was working fine throughout the day. The next day, when they finally fix the network, the public wireless fails utterly. And that's where I'm at -- I've been on the phone with the techs -- they say it should be fixed by tomorrow.
In the meantime, I've been using some unreliable 1-bar public wireless from (I believe) a hospital nearby. It's a bit frustrating.
So, here is a bit of news for the day:
Mouth is finally beginning to heal! Maybe tomorrow I'll be able to speak like a real human!
Continuous portion of pain meds discontinued (clicking on-demand still works)! Earlier today, they decided to cut the continuous portion in half to ween me off the Fentanyl. When it was revealed that my problems going #1 were due to the continuous dose, I jumped on the idea of removing it entirely.
I may be discharged early -- the doctors pointed to the 18th on the calendar. However, some of the requirements were that:
1:I had no pain so severe that pain management was necessary (so mouth gets better). Alternative Interpretation: No dependence on pain meds.
2:Able to eat! (Again, mouth gets better)
3:No Fever
That is all.
Wednesday, November 12, 2008
[11-12-08] Silence (Day +9)
[11:28pm]
Here's my counts:
WBC: 0.2 (0.2 yesterday)
Hematocrit: 28.6 (26.5 yesterday)
Platelets: 12,000 (18,000 yesterday)
Have you ever wondered what it would be like if you couldn't talk? Say you got in a horrific motorcycle accident that damaged only the speech centers of your brain... or an accident so bad that they had to permanently fuse your jaw shut.
I always imagined that I'd get along just fine. I'd carry a chalkboard around and communicate through written word.
10 years later, my elementary school daydream has turned into a reality...
Due to severe mouth pain, I can't speak right now... Not one bit.
"Testing... testing... this is a test."
Ok, I just tried talking. The other three previous attempts failed and were quite painful. But I can do it now!
It was the pain meds. Once my mouth started hurting, I began clicking. Not religiously (exacty every 10 minutes), but often enough.
I managed about 4 clicks before the nurse came in and inquired about my pain level. I write on my computer: "6: 7 when talking and when silent."
She had to take off (for another patient, I believe), but in a few moments she was back and we discussed our options with me talking on the computer.
She wanted to talk to the doctor, to get some part of my pain meds increased... I agreed... provided that I have at least a chance to try to get relief.
My strategy was to click as often as the pain machine would let you (10mins). It was my belief that after 30 minutes or so of doing this, that I could begin speaking again.
My experiment failed. She checked in on me, and I still couldn't speak. So, she ran off to contact the doctor. Meanwhile, I continued to type this entry and click every ten minutes.
Eventually, I had so much pain relief that I was able to speak some words. Still couldn't speak most words, and definitely not a sentence. Still, I had decided to quit clicking for a while because I realized that I had had A LOT! Plus, the pain was a bit more manageable.
Then the nurse had returned: The doctor approved upping my on-demand dose from 50mcg to 75mcg. I had specifically requested an increase in the on-demand dose instead of the continual dose. A continual dose is administered non-stop, whether you are feeling lots of pain or no pain at all... since my pain levels fluctuate, a continual dose is rather inconvenient. The tradeoff with Fentanyl is pain and mental acuity vs. no pain and less mental acuity. It would be lame to reduce one's acuity during a time when they were experiencing no pain.
Anyhow, I digress... Even though I can't speak now, the problem seems to have be resolved: pain relief for those nasty situations will be possible much quicker. This time, it took 130 minutes for satisfactory pain relief. With the increased on-demand rate, I should receive comparable pain relief (perhaps greater, because it is quicker) in about 86 minutes.
-------
Writing this post has been absurdly difficult. Remember what I said about mental acuity? Well, I've had quite a bit of Fentanyl, and my concentration is positively pathetic. I start to daydream mid-sentences, sometimes to such an extent that, instead of the subject-at-hand, I start to type about the dream instead of the blog. Sometimes I just drift off while typing a sentence: "something like thhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh"
In fact, that's why I was especially motivated to finish this little post -- my mind is challenging me!
Also, I'm sure my writing has been unclear and generally awful for this post. So I'm trying extra hard for it to make sense (Additional Challenge)! I'll find out tomorrow just how bad my writing is on large doses of Fentanyl.
Whew, I'm done. That took 2 hours and 10 minutes to write!
Here's my counts:
WBC: 0.2 (0.2 yesterday)
Hematocrit: 28.6 (26.5 yesterday)
Platelets: 12,000 (18,000 yesterday)
Have you ever wondered what it would be like if you couldn't talk? Say you got in a horrific motorcycle accident that damaged only the speech centers of your brain... or an accident so bad that they had to permanently fuse your jaw shut.
I always imagined that I'd get along just fine. I'd carry a chalkboard around and communicate through written word.
10 years later, my elementary school daydream has turned into a reality...
Due to severe mouth pain, I can't speak right now... Not one bit.
"Testing... testing... this is a test."
Ok, I just tried talking. The other three previous attempts failed and were quite painful. But I can do it now!
It was the pain meds. Once my mouth started hurting, I began clicking. Not religiously (exacty every 10 minutes), but often enough.
I managed about 4 clicks before the nurse came in and inquired about my pain level. I write on my computer: "6: 7 when talking and when silent."
She had to take off (for another patient, I believe), but in a few moments she was back and we discussed our options with me talking on the computer.
She wanted to talk to the doctor, to get some part of my pain meds increased... I agreed... provided that I have at least a chance to try to get relief.
My strategy was to click as often as the pain machine would let you (10mins). It was my belief that after 30 minutes or so of doing this, that I could begin speaking again.
My experiment failed. She checked in on me, and I still couldn't speak. So, she ran off to contact the doctor. Meanwhile, I continued to type this entry and click every ten minutes.
Eventually, I had so much pain relief that I was able to speak some words. Still couldn't speak most words, and definitely not a sentence. Still, I had decided to quit clicking for a while because I realized that I had had A LOT! Plus, the pain was a bit more manageable.
Then the nurse had returned: The doctor approved upping my on-demand dose from 50mcg to 75mcg. I had specifically requested an increase in the on-demand dose instead of the continual dose. A continual dose is administered non-stop, whether you are feeling lots of pain or no pain at all... since my pain levels fluctuate, a continual dose is rather inconvenient. The tradeoff with Fentanyl is pain and mental acuity vs. no pain and less mental acuity. It would be lame to reduce one's acuity during a time when they were experiencing no pain.
Anyhow, I digress... Even though I can't speak now, the problem seems to have be resolved: pain relief for those nasty situations will be possible much quicker. This time, it took 130 minutes for satisfactory pain relief. With the increased on-demand rate, I should receive comparable pain relief (perhaps greater, because it is quicker) in about 86 minutes.
-------
Writing this post has been absurdly difficult. Remember what I said about mental acuity? Well, I've had quite a bit of Fentanyl, and my concentration is positively pathetic. I start to daydream mid-sentences, sometimes to such an extent that, instead of the subject-at-hand, I start to type about the dream instead of the blog. Sometimes I just drift off while typing a sentence: "something like thhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh"
In fact, that's why I was especially motivated to finish this little post -- my mind is challenging me!
Also, I'm sure my writing has been unclear and generally awful for this post. So I'm trying extra hard for it to make sense (Additional Challenge)! I'll find out tomorrow just how bad my writing is on large doses of Fentanyl.
Whew, I'm done. That took 2 hours and 10 minutes to write!
Tuesday, November 11, 2008
[11-11-08] Mourn the Eyebrows (Day +8)
[Counts]
Here's my counts:
WBC: 0.2 (0.1 yesterday)
Hematocrit: 26.5 (29.2 yesterday): 2 Units Blood Later
Platelets: 9,000 (18,000 yesterday): Platelet Transfusion Later
Hemoglobin: 9.2 (10.5 yesterday)
[4:17pm]
Yesterday, to my delight, I had discovered that my hair was falling out again. I was delighted, of course, because it triggered the whole "chemo is working because..." emotion. It wasn't a slow loss, either -- the tiny blond hairs that had started to grow back were coming out in clumps. Following tradition, I proceeded to shave with my fingers (pinching).
Today, I was shocked to discover that I had no eyebrows. I don't know why I wasn't prepared for this: I recognized that the eyebrows were thinning, but I didn't think they'd all disappear entirely overnight! Oh well, they are gone.
I always said that I would have the most difficulty losing the eyebrow hair. This is mainly because it is an unavoidable cancer giveaway. Having a bald head can simply be a fashion statement; no one intentionally shaves their eyebrows.
So, now, I can't simply pretend that I don't have cancer when I'm out in public. It's funny though... now that I've been through so many painful, embarassing, or humiliating situations... I could really care less about not having any eyebrows.
Barbara just arrived, so I'm gonna hang out instead of ranting further!
P.S. I just realized -- no eyebrows indicated that I went through cancer treatment... As of now, there's a good chance I no longer have cancer. That's a good thought.
Here's my counts:
WBC: 0.2 (0.1 yesterday)
Hematocrit: 26.5 (29.2 yesterday): 2 Units Blood Later
Platelets: 9,000 (18,000 yesterday): Platelet Transfusion Later
Hemoglobin: 9.2 (10.5 yesterday)
[4:17pm]
Yesterday, to my delight, I had discovered that my hair was falling out again. I was delighted, of course, because it triggered the whole "chemo is working because..." emotion. It wasn't a slow loss, either -- the tiny blond hairs that had started to grow back were coming out in clumps. Following tradition, I proceeded to shave with my fingers (pinching).
Today, I was shocked to discover that I had no eyebrows. I don't know why I wasn't prepared for this: I recognized that the eyebrows were thinning, but I didn't think they'd all disappear entirely overnight! Oh well, they are gone.
I always said that I would have the most difficulty losing the eyebrow hair. This is mainly because it is an unavoidable cancer giveaway. Having a bald head can simply be a fashion statement; no one intentionally shaves their eyebrows.
So, now, I can't simply pretend that I don't have cancer when I'm out in public. It's funny though... now that I've been through so many painful, embarassing, or humiliating situations... I could really care less about not having any eyebrows.
Barbara just arrived, so I'm gonna hang out instead of ranting further!
P.S. I just realized -- no eyebrows indicated that I went through cancer treatment... As of now, there's a good chance I no longer have cancer. That's a good thought.
Monday, November 10, 2008
[11-10-08] Totally Acclimated (Day +7)
[10:52am]
Here's my counts:
WBC: 0.1 (0.1 yesterday)
Hematocrit: 29.2 (29.5 yesterday)
Platelets: 18,000 (32,000 yesterday)
Hemoglobin: 10.5 (10.5 yesterday)
So, I haven't entered the "recovery phase" yet. Basically, I've been told that once the WBC starts to go up, then I will have begun recovery and all my symptoms will begin to improve.
Naturally, I'm paying a lot of attention to when that day occurs -- I look forward to a reduction in "mouth pain." (The only other major symptom is the myriad of skin problems.)
***
It was only a week ago that I had my stem-cell transplant -- for me, it seems like the time has flown by. I guess that's a darn good thing to feel -- that time flies in the BMT ward. Probably a bit unusual too...
Pre-transplant was a different story -- that was generally a pretty rough time (The ICU, the chemo, the nausea/vomiting). On the other hand, once I was moved into isolation (single room) things rapidly got much better. By then I was only concerned with skin problems and mouth pain. Once I began Fentanyl for mouth pain and religiously began applying skin care stuff, I found that I was no longer counting the days until departure... time was moving faster; I was enjoying myself.
I guess my point is that I have completely acclimated myself to my particular room in the BMT ward. I have an established routine For the time being, this is my new home. It is nice.
Here's my counts:
WBC: 0.1 (0.1 yesterday)
Hematocrit: 29.2 (29.5 yesterday)
Platelets: 18,000 (32,000 yesterday)
Hemoglobin: 10.5 (10.5 yesterday)
So, I haven't entered the "recovery phase" yet. Basically, I've been told that once the WBC starts to go up, then I will have begun recovery and all my symptoms will begin to improve.
Naturally, I'm paying a lot of attention to when that day occurs -- I look forward to a reduction in "mouth pain." (The only other major symptom is the myriad of skin problems.)
***
It was only a week ago that I had my stem-cell transplant -- for me, it seems like the time has flown by. I guess that's a darn good thing to feel -- that time flies in the BMT ward. Probably a bit unusual too...
Pre-transplant was a different story -- that was generally a pretty rough time (The ICU, the chemo, the nausea/vomiting). On the other hand, once I was moved into isolation (single room) things rapidly got much better. By then I was only concerned with skin problems and mouth pain. Once I began Fentanyl for mouth pain and religiously began applying skin care stuff, I found that I was no longer counting the days until departure... time was moving faster; I was enjoying myself.
I guess my point is that I have completely acclimated myself to my particular room in the BMT ward. I have an established routine For the time being, this is my new home. It is nice.
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.
Saturday, November 1, 2008
[11-01-08] Cytoxan (Day -2)
[10:55am]
I forgot: this is supposed to be Christmas! This is what I've been looking for: BMT Fantasyland, where you can just sit back, take your pills, and have your cancer melt away. Nothing is further from the truth.
Everything in here is a little battle. Taking your pills in the morning without vomiting is a battle. Fighting to get your anti-emetics is a battle. Just surviving all this is a battle.
I've come out of the ICU with some battle-damage: A few more scars (one from a removed catheter), an IV placed in my hand, and a weird three-pronged catheter in my neck. Then I was sent home, to the BMT unit. Two transfusions later, I'm feeling a little more energetic, but still I am feeling persistently nauseated. I guess that's how things go around here: a battlezone and a balancing act.
I just hope it gets better. Unrealistic, I know -- but this is putting my body through quite an ordeal. I can't wait to see Liz :P
[2:30]
We started the Cytoxan about an hour ago. Back then, the prospect of more chemo was faced with a good deal of dread. I had nausea and quite an upset stomach -- I couldn't fathom things getting any worse... But, like a good little boy, I took my pre-meds and started the chemo and fell asleep.
I woke up feeling great! I mean, not normal great, but the difference between then and now was profound. So, I'm eating and writing on my blog! Eating cheetos and chicken noodle soup! I haven't eaten like this for days -- it's great! I'm joyful.
Hmmm... On another note, I think I can feel the mucositis starting to creep in -- it not like sores, it seems, but a general sensitivity in the mouth. After my meal of cheetos and soup, it feels like I just had a bunch of Jalapeno peppers... Right now it is just interesting to notice, I'm sure it'll become a huge problem in the future -- they all say it does.
Health Status: Blood Pressure is up, and I have normal temp! Woot!
I forgot: this is supposed to be Christmas! This is what I've been looking for: BMT Fantasyland, where you can just sit back, take your pills, and have your cancer melt away. Nothing is further from the truth.
Everything in here is a little battle. Taking your pills in the morning without vomiting is a battle. Fighting to get your anti-emetics is a battle. Just surviving all this is a battle.
I've come out of the ICU with some battle-damage: A few more scars (one from a removed catheter), an IV placed in my hand, and a weird three-pronged catheter in my neck. Then I was sent home, to the BMT unit. Two transfusions later, I'm feeling a little more energetic, but still I am feeling persistently nauseated. I guess that's how things go around here: a battlezone and a balancing act.
I just hope it gets better. Unrealistic, I know -- but this is putting my body through quite an ordeal. I can't wait to see Liz :P
[2:30]
We started the Cytoxan about an hour ago. Back then, the prospect of more chemo was faced with a good deal of dread. I had nausea and quite an upset stomach -- I couldn't fathom things getting any worse... But, like a good little boy, I took my pre-meds and started the chemo and fell asleep.
I woke up feeling great! I mean, not normal great, but the difference between then and now was profound. So, I'm eating and writing on my blog! Eating cheetos and chicken noodle soup! I haven't eaten like this for days -- it's great! I'm joyful.
Hmmm... On another note, I think I can feel the mucositis starting to creep in -- it not like sores, it seems, but a general sensitivity in the mouth. After my meal of cheetos and soup, it feels like I just had a bunch of Jalapeno peppers... Right now it is just interesting to notice, I'm sure it'll become a huge problem in the future -- they all say it does.
Health Status: Blood Pressure is up, and I have normal temp! Woot!
Thursday, October 30, 2008
[10-30-08] VP-16 (Day -4)
[10:50am]
I've forgotten to mention some of the more important side-effects since I've been admitted here... As always, for the sake of accuracy, I will go into further detail.
Firstly, I haven't really been able to eat anything. Surprisingly, this distresses doctors far less than one would think. Sure, I can eat a few bites of Jello here and there, milks, or a few applesauces, but nothing really substantial. The doctor's have mentioned TPN (which is basically IV nutrients), but they seem to think that it is not necessary as long as I eat something.
Perhaps as a corollary to the first, I have been sans-poop for the past 3 days. This, on the other hand, has the doctors quite concerned. They are giving me lots of pills for this: senna, colace, laxatives, etc... Nada.
The nurse told me that it was especially important to have a bowel movement today. So, I was trying to force myself to eat some actual food this morning... thinking high intake equals high output... or some such nonsense. After eating the obligatory Jello and applesauce, I began a daring move to the eggs and bacon. It was a valiant effort, but I just couldn't swallow it. Next, I thought to myself how I was strangely able to eat a bag of Cheetos last night. So, I went for the Cheetos.
Cheetos and Jello don't mix. I quickly hollered for the Ativan, but I was too late... I vomited what little food I had. *sigh*
The nurse recommended I try some ensure, so I'll try that next.
The other side effect has been fevers! I've been having daily and nightly fevers since I have arrived here. Sometime I just coast at 100.4, and sometimes I spike higher. Even if the fevers are not worthy for intervention, they are quite annoying! They give me such a headache, and I can't take any Tylenol because they want me to get a high enough fever for a blood culture... or something (They give you Tylenol if it goes high enough, of course).
The fevers also give me this pain behind the eyes, and make it quite hard to focus on anything.
Anyhow, it's all a bunch of mini-battles. Now onto the larger one: The VP-16! (Update Later)
I've forgotten to mention some of the more important side-effects since I've been admitted here... As always, for the sake of accuracy, I will go into further detail.
Firstly, I haven't really been able to eat anything. Surprisingly, this distresses doctors far less than one would think. Sure, I can eat a few bites of Jello here and there, milks, or a few applesauces, but nothing really substantial. The doctor's have mentioned TPN (which is basically IV nutrients), but they seem to think that it is not necessary as long as I eat something.
Perhaps as a corollary to the first, I have been sans-poop for the past 3 days. This, on the other hand, has the doctors quite concerned. They are giving me lots of pills for this: senna, colace, laxatives, etc... Nada.
The nurse told me that it was especially important to have a bowel movement today. So, I was trying to force myself to eat some actual food this morning... thinking high intake equals high output... or some such nonsense. After eating the obligatory Jello and applesauce, I began a daring move to the eggs and bacon. It was a valiant effort, but I just couldn't swallow it. Next, I thought to myself how I was strangely able to eat a bag of Cheetos last night. So, I went for the Cheetos.
Cheetos and Jello don't mix. I quickly hollered for the Ativan, but I was too late... I vomited what little food I had. *sigh*
The nurse recommended I try some ensure, so I'll try that next.
The other side effect has been fevers! I've been having daily and nightly fevers since I have arrived here. Sometime I just coast at 100.4, and sometimes I spike higher. Even if the fevers are not worthy for intervention, they are quite annoying! They give me such a headache, and I can't take any Tylenol because they want me to get a high enough fever for a blood culture... or something (They give you Tylenol if it goes high enough, of course).
The fevers also give me this pain behind the eyes, and make it quite hard to focus on anything.
Anyhow, it's all a bunch of mini-battles. Now onto the larger one: The VP-16! (Update Later)
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.
Saturday, October 25, 2008
[10-25-08] Bad Daydreams
[1:20pm]
We drove all the way down to Stanford to find out that my infusion was scheduled for Sunday, not Saturday! Whoops! We were told, most recently, that the appointment was Saturday, but you've always got to double check everything... be ever vigilant with health care.
There was those times my cisplatin dose was less than required... and the countless times I've had to specify that it was Hodgkin's Lymphoma, not non-Hodgkins Lymphoma.
On another subject, my hair is starting to grow back quite rapidly. My head no longer feels smooth, but scruff -- the change is nice. And I've got my chin hairs back! Still... I don't like it. I want maintain my chemo intensity.
In addition, I had some trouble sleeping last night because I was itching furiously. Still, the itch persists. It's the all-too-familiar Hodgkin's coming back to taunt me and remind me that he's still there. Persistent little bugger.
Now, maybe it's because my spirits have been a bit low lately... But, with the itch coming back, it feels like all this has been for nothing. 8 months of small chemo; doing nothing but making the tumor more resistant to chemo. Bah.
Then, I always ask myself: What if the BMT doesn't kill the tumor? or... What if, after a successful BMT, the tumor returns?
I start to daydream about that possible future... I'd like to think I'd spend my last days bartending on the Galapagos islands, but that's not really me -- is it?
I'd probably jump from clinical study to clinical study, subjecting myself to all sorts of interesting drugs in order to extend life. Then there's be the last-ditch allogeneic (bone marrow from someone else) transplant.
I wouldn't really accomplish my dreams, I suppose. I'd have to cancel grad school to accomodate treatment. Or, if I ignored treatment entirely, would I really be able to afford grad school? Or, for that matter, would it even make sense?
So, I'd settle for a job in the here and now. Instead of learning graphics programming, AI, and general video game programming, I'd focus on more practical (in-demand) skills such as database programming, and network programming. That type of programming is actually a bit easier for me, so I'd be able to be marketable relatively soon.
So, I'd get a low-paying programming job. Which would be great, for a time... but then the illness would present a problem. Treatment may have to be intensified, and I'd probably be unable to work and go on disability or something.
At this time, I'd feel like I have to contribute to society somehow. I mean, I haven't had my programming job long enough to make real substantial developments that would benefit many. So, maybe I'd start writing a novel... or composing a piece of music... something to leave behind.
Too bad I'm infertile and didn't have enough time to become financially capable of starting a family. That's always been my primary goal in life. A meaningful career I love and enjoy comes in second. To lose both... sucks.
Given that possibility, how should I act now?
Anyhow, I'll stop there. That's my career/goals daydream, I also have a relationship one, but that's a bit more depressing. Then there's a bucket-list one, a cancer-survivor one, the ultra happy one, and more. I daydream a lot. Good or bad, these are my daydreams, and I'm not ashamed of them. I'm not trying to focus on the negative or anything, but this is what I'm thinking, and I promised to write what I'm thinking... And with the itching returning, I've been thinking about the negative possibilities.
On an entirely different note, there was a glitch in my re-admission process which caused it to be delayed by 5 days. And, as luck would have it, all the classes I need or that would be practical have been filled. So I'm waitlisted for all my classes -- yet more to stress about.
Hence the bad mood. Excuse me.
We drove all the way down to Stanford to find out that my infusion was scheduled for Sunday, not Saturday! Whoops! We were told, most recently, that the appointment was Saturday, but you've always got to double check everything... be ever vigilant with health care.
There was those times my cisplatin dose was less than required... and the countless times I've had to specify that it was Hodgkin's Lymphoma, not non-Hodgkins Lymphoma.
On another subject, my hair is starting to grow back quite rapidly. My head no longer feels smooth, but scruff -- the change is nice. And I've got my chin hairs back! Still... I don't like it. I want maintain my chemo intensity.
In addition, I had some trouble sleeping last night because I was itching furiously. Still, the itch persists. It's the all-too-familiar Hodgkin's coming back to taunt me and remind me that he's still there. Persistent little bugger.
Now, maybe it's because my spirits have been a bit low lately... But, with the itch coming back, it feels like all this has been for nothing. 8 months of small chemo; doing nothing but making the tumor more resistant to chemo. Bah.
Then, I always ask myself: What if the BMT doesn't kill the tumor? or... What if, after a successful BMT, the tumor returns?
I start to daydream about that possible future... I'd like to think I'd spend my last days bartending on the Galapagos islands, but that's not really me -- is it?
I'd probably jump from clinical study to clinical study, subjecting myself to all sorts of interesting drugs in order to extend life. Then there's be the last-ditch allogeneic (bone marrow from someone else) transplant.
I wouldn't really accomplish my dreams, I suppose. I'd have to cancel grad school to accomodate treatment. Or, if I ignored treatment entirely, would I really be able to afford grad school? Or, for that matter, would it even make sense?
So, I'd settle for a job in the here and now. Instead of learning graphics programming, AI, and general video game programming, I'd focus on more practical (in-demand) skills such as database programming, and network programming. That type of programming is actually a bit easier for me, so I'd be able to be marketable relatively soon.
So, I'd get a low-paying programming job. Which would be great, for a time... but then the illness would present a problem. Treatment may have to be intensified, and I'd probably be unable to work and go on disability or something.
At this time, I'd feel like I have to contribute to society somehow. I mean, I haven't had my programming job long enough to make real substantial developments that would benefit many. So, maybe I'd start writing a novel... or composing a piece of music... something to leave behind.
Too bad I'm infertile and didn't have enough time to become financially capable of starting a family. That's always been my primary goal in life. A meaningful career I love and enjoy comes in second. To lose both... sucks.
Given that possibility, how should I act now?
Anyhow, I'll stop there. That's my career/goals daydream, I also have a relationship one, but that's a bit more depressing. Then there's a bucket-list one, a cancer-survivor one, the ultra happy one, and more. I daydream a lot. Good or bad, these are my daydreams, and I'm not ashamed of them. I'm not trying to focus on the negative or anything, but this is what I'm thinking, and I promised to write what I'm thinking... And with the itching returning, I've been thinking about the negative possibilities.
On an entirely different note, there was a glitch in my re-admission process which caused it to be delayed by 5 days. And, as luck would have it, all the classes I need or that would be practical have been filled. So I'm waitlisted for all my classes -- yet more to stress about.
Hence the bad mood. Excuse me.
Thursday, October 23, 2008
[10-23-08] Mariska!
[10:43pm]
I got a new niece! Mariska was born today in the early afternoon, and everyone is fine and happy. I haven't seen her yet, but I plan to get a ride down to Santa Cruz for a day visit on Friday -- to hell with the 20 mile radius, I feel quite nominal.
As for me, well I've just been playing my video games... I'm trying to waste as much time as possible -- I can't wait to get this started! It's like when you're a kid and you're waiting for Christmas... a valid strategy is to sleep excessively :P
To bad I can't sleep to well. It's funny: most people look at their alarm clock with a sense of dread in the morning. I do as well, but in a way that is totally different than you'd expect. One typically says, "Oh man, it's almost 7:00am -- I only have ten more minutes of sleep." I, on the other hand, say, "Oh man, it's almost 7:00am -- last time I was awake was at 6:40am.. it's only been 10 minutes, so little time has passed."
Oh well. It's mostly the mattress, I think. Perhaps I should score a Tempurpedic. But those hospital beds were darn comfortable... I wonder how I'll sleep there... So much anticipation!
I got a new niece! Mariska was born today in the early afternoon, and everyone is fine and happy. I haven't seen her yet, but I plan to get a ride down to Santa Cruz for a day visit on Friday -- to hell with the 20 mile radius, I feel quite nominal.
As for me, well I've just been playing my video games... I'm trying to waste as much time as possible -- I can't wait to get this started! It's like when you're a kid and you're waiting for Christmas... a valid strategy is to sleep excessively :P
To bad I can't sleep to well. It's funny: most people look at their alarm clock with a sense of dread in the morning. I do as well, but in a way that is totally different than you'd expect. One typically says, "Oh man, it's almost 7:00am -- I only have ten more minutes of sleep." I, on the other hand, say, "Oh man, it's almost 7:00am -- last time I was awake was at 6:40am.. it's only been 10 minutes, so little time has passed."
Oh well. It's mostly the mattress, I think. Perhaps I should score a Tempurpedic. But those hospital beds were darn comfortable... I wonder how I'll sleep there... So much anticipation!
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