[10:53pm]
This morning, my Stanford nurse called with a warning: Monday's Cytoxan could be delayed further if I continued to have an irregular chest x-ray.
With a night cough that has lasted for over a week despite antibiotics, I am growing increasingly concerned that there might actually be a troubling new diagnosis ahead. Even if there isn't, it doesn't seem to be going away, and I don't like the possibility of delaying chemo further. I understand the implications of reducing chemo-intensity and I don't like it.
Fighting cancer is such a stressful occupation. Sometimes I wish I didn't have to call nurses, schedule appointments, wait for return calls, and panic about impending test results. It would be nice to just chill. Or maybe work full-time -- a forced distraction would be nice... video games and the internet can only encompass so much time... responsibility creeps in.
Anyhow, I'm still isolated on the boat. It's going to be a big project getting this place prepared for post-cytoxan. Still, I can't delay the chemo even further due to illness -- that'd be devastating. Liz has a fever this weekend, so I can't see her either. I'm really bummed about that -- I was really looking forward to seeing her. Damn cancer.
Bah.
As for the catheter, it is really creepy injecting Heparin into a tube leading directly into your heart. Really freaky. You don't want any air bubbles! And don't forget to clamp the tube shut! The prospect of me forgetting something like that...
Well, at least I'm getting used to it.
Showing posts with label testing. Show all posts
Showing posts with label testing. Show all posts
Friday, September 19, 2008
Tuesday, September 16, 2008
[9-16-08] Pleural Effusion
[11:07am]
My doctor from Stanford just called... I've learned that a direct call from a doctor is never a good thing. At least, not with cancer. My chest x-ray indicated a fluid build-up around my left lung -- a pleural effusion. This fluid build-up is especially vulnerable to infection, which is exactly what my doctor believed has happened. From what I gather, with an effusion, the fact that I start coughing whenever I lie down means that infection is quite likely.
My doctor wants to start me on 5-day antibiotics. This means delaying the chemo. Hopefully, Cytoxan will begin early next week. Hopefully, this wont effect my BMT schedule too adversely. Hopefully, I will learn to use the word "hopefully" correctly.
See, technically, my first comment means: "Cytoxan will begin early next week with a hopeful demeanor." Or, "I will learn to use the word 'hopefully' with a hopeful demeanor." What everyone is used to is actually incorrect usage. But, oh well, everyone does it -- that mean it is OK in the English language.
Sorry, my mind wanders when I am upset. Oh well, at least the treatment should get me a good night's sleep. That would be great.
My doctor from Stanford just called... I've learned that a direct call from a doctor is never a good thing. At least, not with cancer. My chest x-ray indicated a fluid build-up around my left lung -- a pleural effusion. This fluid build-up is especially vulnerable to infection, which is exactly what my doctor believed has happened. From what I gather, with an effusion, the fact that I start coughing whenever I lie down means that infection is quite likely.
My doctor wants to start me on 5-day antibiotics. This means delaying the chemo. Hopefully, Cytoxan will begin early next week. Hopefully, this wont effect my BMT schedule too adversely. Hopefully, I will learn to use the word "hopefully" correctly.
See, technically, my first comment means: "Cytoxan will begin early next week with a hopeful demeanor." Or, "I will learn to use the word 'hopefully' with a hopeful demeanor." What everyone is used to is actually incorrect usage. But, oh well, everyone does it -- that mean it is OK in the English language.
Sorry, my mind wanders when I am upset. Oh well, at least the treatment should get me a good night's sleep. That would be great.
Monday, September 8, 2008
[9-08-08] Motocancer
[4:42pm]
We left for Stanford today at 8:20am... we just got back. That's almost 9 hours on the road! This time, Dan drew the short straw -- he was the unfortunate cancer courier for this trip to Stanford.
It started with a plea to recover my motorcycle. For the past month or so, my motorcycle has been left abandoned in the city of Berkeley. Sometime last week, the permit expired, and I was constantly worried that the motorcycle would be towed... Additionally, without a motorcycle nearby, I am even more helpless without local transportation. Fortunately, Dan agreed to help me transport my motorcycle in his van (Thanks Dan!). [The reason I don't just ride the motorcycle from Berkeley to Santa Cruz is because a trip of that distance is very tiring. My family prefers that I be safe and avoid exerting myself too much while driving a motorcycle.]
Since Monday was also the day of my Stanford appointment, Dan was recruited to take me there as well. Unfortunately, Stanford is hardly on the way to Berkeley...
When we arrived, I was given the whole BMT spiel all over again. I re-learned about the risks, the difficulties, and the treatment details. Some new things I learned were about the long-term side effects. I always thought it was naive to assume that I would beat this cancer without some long-term battle damage... it appears that I was correct. Here's what I learned:
1: I will be infertile. I thought this was more like, "there is a 25% chance you will remain fertile." But this nurse seems pretty certain of this.
2: There is an 18%-20% chance of lung damage due to the Carmustine. It is possible to reverse this damage if caught quickly. I don't relish the thought of coughing the rest of my life.
3: 10% chance of developing a secondary cancer.
4: Unspecified chance of liver/kidney damage, since all these drugs work their way through the liver or kidneys.
That's most of what I remember. Oh, and maybe they have to mention it or something... but it is somewhat disturbing to be repeatedly told about the possibility of hair loss due to a chemotherapy agent. Uhm... Hello? I know... I lost it all already.
Oh well.
After that, she began talking about the particular clinical study I was to be a member of. In particular, I noted what she said about the study preceding (parent study?) mine. The previous study lacked two chemotherapy agents and had greater doses of Carmustine. She cited a 5 year remission rate of 50%. When I told her that my doctor expected around 80%, she seemed skeptical. I don't like that. However, perhaps that is because she lumped me in the same category as all Hodgkin's patients. Being stage IA Bulky has got to up the odds.
Throughout the meeting, the nurse expressed her shock that I *still* had no "BMT calendar" drawn up. She called my scheduling nurse, and allowed me a quick visit with her.
My scheduling nurse said that a calendar could not be drawn without me finishing certain preliminary tests. (Why haven't I taken had these tests scheduledearler? hmm?) Fortunately, I was given an opportunity to save lots of time: she could schedule me for my last test at 2pm (an echocardiogram), and have my calendar available for pickup then. I agreed, I had no choice... though it would be difficult.
You see, the current time was 11:30am. The echocardiogram was at 2:00pm. That leaves 2.5 hours to drive to Berkeley (through San Francisco), by some lumber for a makeshift ramp for my motorcycle, load my motorcycle into the van, and return to Stanford. It was difficult. In the end, I arrived at my echo about 30 minutes late. And yes, the receptionists gave me a very hard time about it. I felt bad, but still, it was a victory.
Well, not completely. After the echo, my scheduling nurse was too busy to create a calendar for me. Hopefully, I'll receive it via email this evening.
So, that was my day.
Also, unfortunately, I have more to add in the "side effects" department.
My throat hurts when I swallow. At times, it hurts my throat even when I speak. At night, the irritation seems to cause me to cough a bunch. Accordingly, I'm gulping down the "lidocaine mouthwash" every four hours. It helps, but doesn't seem to get rid of it... Barbara believes I might have an ulcer of some type in my throat. This has got to be the second worst side effect so far (nausea, of course, being #1). I'll have to make an appointment if this doesn't get better soon.
Additionally, most of my chest hairs have fallen out. The problem is, they also haven't stopped growing. So, I've got a bunch of red spots of ingrown hairs. eww. Sounds worse than it is though... like small bug bites.
Kinda makes one think how bad it'll get... Should be interesting...
We left for Stanford today at 8:20am... we just got back. That's almost 9 hours on the road! This time, Dan drew the short straw -- he was the unfortunate cancer courier for this trip to Stanford.
It started with a plea to recover my motorcycle. For the past month or so, my motorcycle has been left abandoned in the city of Berkeley. Sometime last week, the permit expired, and I was constantly worried that the motorcycle would be towed... Additionally, without a motorcycle nearby, I am even more helpless without local transportation. Fortunately, Dan agreed to help me transport my motorcycle in his van (Thanks Dan!). [The reason I don't just ride the motorcycle from Berkeley to Santa Cruz is because a trip of that distance is very tiring. My family prefers that I be safe and avoid exerting myself too much while driving a motorcycle.]
Since Monday was also the day of my Stanford appointment, Dan was recruited to take me there as well. Unfortunately, Stanford is hardly on the way to Berkeley...
When we arrived, I was given the whole BMT spiel all over again. I re-learned about the risks, the difficulties, and the treatment details. Some new things I learned were about the long-term side effects. I always thought it was naive to assume that I would beat this cancer without some long-term battle damage... it appears that I was correct. Here's what I learned:
1: I will be infertile. I thought this was more like, "there is a 25% chance you will remain fertile." But this nurse seems pretty certain of this.
2: There is an 18%-20% chance of lung damage due to the Carmustine. It is possible to reverse this damage if caught quickly. I don't relish the thought of coughing the rest of my life.
3: 10% chance of developing a secondary cancer.
4: Unspecified chance of liver/kidney damage, since all these drugs work their way through the liver or kidneys.
That's most of what I remember. Oh, and maybe they have to mention it or something... but it is somewhat disturbing to be repeatedly told about the possibility of hair loss due to a chemotherapy agent. Uhm... Hello? I know... I lost it all already.
Oh well.
After that, she began talking about the particular clinical study I was to be a member of. In particular, I noted what she said about the study preceding (parent study?) mine. The previous study lacked two chemotherapy agents and had greater doses of Carmustine. She cited a 5 year remission rate of 50%. When I told her that my doctor expected around 80%, she seemed skeptical. I don't like that. However, perhaps that is because she lumped me in the same category as all Hodgkin's patients. Being stage IA Bulky has got to up the odds.
Throughout the meeting, the nurse expressed her shock that I *still* had no "BMT calendar" drawn up. She called my scheduling nurse, and allowed me a quick visit with her.
My scheduling nurse said that a calendar could not be drawn without me finishing certain preliminary tests. (Why haven't I taken had these tests scheduledearler? hmm?) Fortunately, I was given an opportunity to save lots of time: she could schedule me for my last test at 2pm (an echocardiogram), and have my calendar available for pickup then. I agreed, I had no choice... though it would be difficult.
You see, the current time was 11:30am. The echocardiogram was at 2:00pm. That leaves 2.5 hours to drive to Berkeley (through San Francisco), by some lumber for a makeshift ramp for my motorcycle, load my motorcycle into the van, and return to Stanford. It was difficult. In the end, I arrived at my echo about 30 minutes late. And yes, the receptionists gave me a very hard time about it. I felt bad, but still, it was a victory.
Well, not completely. After the echo, my scheduling nurse was too busy to create a calendar for me. Hopefully, I'll receive it via email this evening.
So, that was my day.
Also, unfortunately, I have more to add in the "side effects" department.
My throat hurts when I swallow. At times, it hurts my throat even when I speak. At night, the irritation seems to cause me to cough a bunch. Accordingly, I'm gulping down the "lidocaine mouthwash" every four hours. It helps, but doesn't seem to get rid of it... Barbara believes I might have an ulcer of some type in my throat. This has got to be the second worst side effect so far (nausea, of course, being #1). I'll have to make an appointment if this doesn't get better soon.
Additionally, most of my chest hairs have fallen out. The problem is, they also haven't stopped growing. So, I've got a bunch of red spots of ingrown hairs. eww. Sounds worse than it is though... like small bug bites.
Kinda makes one think how bad it'll get... Should be interesting...
Sunday, September 7, 2008
[9-07-08] Good to be Home
[2:47pm]
With my sister's cold long gone and my WBC rising, I have now been given permission to return to home base. It's a good feeling. I've really missed my family... and my desktop. :P
Tomorrow is the second Stanford appointment! Starting at 10am, I sign the consent form and hopefully get things under way. They also requested my Pet/CT CD, which I took a peek at...
I thought the CD would be full of weird and inaccessible medical mumbo jumbo, but it was quite user friendly. Just plug in the CD, then it installs the software and loads your personal profile. There are cross-sections of your body on the left, and a vertical 3d representation of yourself on the right. I'll post some images sometime later.
Anyhow, the tumor *is* large. And by looking at the cross-sections on the left, I can see the high-activity parts of the tumor. Interesting to note, however, that some non-cancer regions of my body have about the same activity. Also interesting is that the tumor itself is cone-shaped, not solid. It looks kinda like a coffee mug, and the regions of activity are along the edges of the coffee-mug, not the center.
Anyhow, I just got home. So I'm going to get more settled in. More later.
With my sister's cold long gone and my WBC rising, I have now been given permission to return to home base. It's a good feeling. I've really missed my family... and my desktop. :P
Tomorrow is the second Stanford appointment! Starting at 10am, I sign the consent form and hopefully get things under way. They also requested my Pet/CT CD, which I took a peek at...
I thought the CD would be full of weird and inaccessible medical mumbo jumbo, but it was quite user friendly. Just plug in the CD, then it installs the software and loads your personal profile. There are cross-sections of your body on the left, and a vertical 3d representation of yourself on the right. I'll post some images sometime later.
Anyhow, the tumor *is* large. And by looking at the cross-sections on the left, I can see the high-activity parts of the tumor. Interesting to note, however, that some non-cancer regions of my body have about the same activity. Also interesting is that the tumor itself is cone-shaped, not solid. It looks kinda like a coffee mug, and the regions of activity are along the edges of the coffee-mug, not the center.
Anyhow, I just got home. So I'm going to get more settled in. More later.
Sunday, August 31, 2008
[8-31-08] Discharge!
[10:15am]
Yay! I get to leave my room today! Hopefully around 12:00pm. Of course, they are insisting that I wear a mask, as my neutropenic score is 280!
That means that my WBC is 1.0, and Neutrophils at 28%.
I don't look forward to walking around with a mask. Bah. They're also planning on hooking me up with some more of that bone-pain-inducing Neupogen so that I get those counts up and return safely in two weeks. I've got to push forward!
Hemoglobin is still slipping at 10.5! Approaching that devastating 10. All this is like a race-track! I mean, sure, it's my life and everything, but who says you can't have a little fun playing the numbers?
If I sit around all day, hoping the numbers will get higher, I will surely find myself repeatedly disappointed. If I embrace the inevitable, then I can have a little fun with it. Look at falling numbers as a challenge, not a curse. Low numbers? Fine, a chance to test my mettle. Let's see how these numbers duke it out with the fabled sword of Neutroscalibur!
Ok, before I get too deep in the realm of silly. Allow me to make my point:
1: Things will suck.
2: Often, there is very little you can do about #1.
3: So just embrace it: make it a game, look forward to it, whatever it takes to make #1 not get you down. Because...
4: When it all comes down to it, and you've done everything you can, everything else is up to chance. So go with it.
Just a bit of my twisted philosophy.
Yay! I get to leave my room today! Hopefully around 12:00pm. Of course, they are insisting that I wear a mask, as my neutropenic score is 280!
That means that my WBC is 1.0, and Neutrophils at 28%.
I don't look forward to walking around with a mask. Bah. They're also planning on hooking me up with some more of that bone-pain-inducing Neupogen so that I get those counts up and return safely in two weeks. I've got to push forward!
Hemoglobin is still slipping at 10.5! Approaching that devastating 10. All this is like a race-track! I mean, sure, it's my life and everything, but who says you can't have a little fun playing the numbers?
If I sit around all day, hoping the numbers will get higher, I will surely find myself repeatedly disappointed. If I embrace the inevitable, then I can have a little fun with it. Look at falling numbers as a challenge, not a curse. Low numbers? Fine, a chance to test my mettle. Let's see how these numbers duke it out with the fabled sword of Neutroscalibur!
Ok, before I get too deep in the realm of silly. Allow me to make my point:
1: Things will suck.
2: Often, there is very little you can do about #1.
3: So just embrace it: make it a game, look forward to it, whatever it takes to make #1 not get you down. Because...
4: When it all comes down to it, and you've done everything you can, everything else is up to chance. So go with it.
Just a bit of my twisted philosophy.
Wednesday, August 27, 2008
[8-27-08] ICE again, naturally
[1:58pm]
I need FOOD! On the hospital patient guide, it specifies that lunch is to promptly arrive between 11:00am and 1:00pm. Around here, in the oncology department, that usually means that we get lunch at 1:00pm. I'm used to that, so I've been patiently waiting... To my horror, I just learned that I've been forgotten! Even worse, they are prohibiting me from walking to the cafeteria!
Fortunately, I've bribed one of the guards -- she's going to try to smuggle something in.
Onto less important stuff...
I haven't really elaborated how I feel regarding my scan results. Truthfully, I am pleased with the results. Not ecstatic; not depressed... pleased.
Apparently, this sort of casual attitude really annoys oncologists. It makes sense: they have to deliver so much bad news to so many people; any chance to deliver good news is a prized opportunity. It's a bit of a buzzkill if the patient already expects and calmly acknowledges the good news. Oh well -- I can't help that.
But basically, I got exactly what I expected. Actually, not exactly. I expected the tumor to shrink, say, 35%. Not enough to head straight for Stanford, but enough to justify a BMT and continue ICE treatment. Technically, my results were substantially better than that. Even though the tumor only decreased in size by about ten percent, its metabolism went from a 5 to a 2. So I really have a 60% reduction. Call me old fashioned, but I want the thing to shrink a bunch too.
Regardless, I can now go to Stanford (yay!), and I will get 2 more ICE sessions. Now that I think about it -- I am relieved. If the ICE did nothing, I would be in a very bad situation. But now, I can start making long-term plans again. So... good.
but... I was just now starting to recover from the last ICE treatment! I mean, it wasn't all that harsh, but there were certain disadvantages... My stomach has just returned to me a few days ago: I can eat *anything* again! And, with regard to the opposite of eating, things have returned to nominal (mostly) functionality! It's one of those things that you don't miss until you lose it. Let me tell you, I can truly appreciate it right now.
Now, I get to go back to the hospital and lose all that yet again. That sucks! Bah.
Maybe this time, the ICE will put up more of a fight. In a way, I want my opponent to be more of a challenge. Like a ten year old beating up a heavyweight boxer... I'm kind of embarrassed for him. Let him get in a few punches just to keep up appearances...this is too easy.
Anyhow, I forgot my notebook charger!! How could I do that?!?! I'm a nerd for crying out loud! That's like forgetting to put on pants in the morning! So, my battery has a few minutes left. So, ta ta for now.
I need FOOD! On the hospital patient guide, it specifies that lunch is to promptly arrive between 11:00am and 1:00pm. Around here, in the oncology department, that usually means that we get lunch at 1:00pm. I'm used to that, so I've been patiently waiting... To my horror, I just learned that I've been forgotten! Even worse, they are prohibiting me from walking to the cafeteria!
Fortunately, I've bribed one of the guards -- she's going to try to smuggle something in.
Onto less important stuff...
I haven't really elaborated how I feel regarding my scan results. Truthfully, I am pleased with the results. Not ecstatic; not depressed... pleased.
Apparently, this sort of casual attitude really annoys oncologists. It makes sense: they have to deliver so much bad news to so many people; any chance to deliver good news is a prized opportunity. It's a bit of a buzzkill if the patient already expects and calmly acknowledges the good news. Oh well -- I can't help that.
But basically, I got exactly what I expected. Actually, not exactly. I expected the tumor to shrink, say, 35%. Not enough to head straight for Stanford, but enough to justify a BMT and continue ICE treatment. Technically, my results were substantially better than that. Even though the tumor only decreased in size by about ten percent, its metabolism went from a 5 to a 2. So I really have a 60% reduction. Call me old fashioned, but I want the thing to shrink a bunch too.
Regardless, I can now go to Stanford (yay!), and I will get 2 more ICE sessions. Now that I think about it -- I am relieved. If the ICE did nothing, I would be in a very bad situation. But now, I can start making long-term plans again. So... good.
but... I was just now starting to recover from the last ICE treatment! I mean, it wasn't all that harsh, but there were certain disadvantages... My stomach has just returned to me a few days ago: I can eat *anything* again! And, with regard to the opposite of eating, things have returned to nominal (mostly) functionality! It's one of those things that you don't miss until you lose it. Let me tell you, I can truly appreciate it right now.
Now, I get to go back to the hospital and lose all that yet again. That sucks! Bah.
Maybe this time, the ICE will put up more of a fight. In a way, I want my opponent to be more of a challenge. Like a ten year old beating up a heavyweight boxer... I'm kind of embarrassed for him. Let him get in a few punches just to keep up appearances...this is too easy.
Anyhow, I forgot my notebook charger!! How could I do that?!?! I'm a nerd for crying out loud! That's like forgetting to put on pants in the morning! So, my battery has a few minutes left. So, ta ta for now.
Monday, August 25, 2008
[8-25-08] Pet-CT Scan
[1:44pm]
I just returned from my third Pet-CT scan! I'll just reiterate: This one is especially important because it determines whether I will be able to go to Stanford for their BMT program. There better be some progress! Naturally, I am sitting on the edge of my seat... metaphorically speaking. I find out the results tomorrow, and the next step of the big plan. That'll be an important day.
The scan went well. Liz and I set two alarms because we were paranoid that something might make us miss this critical appointment, and I arrived there way early -- which was fine, because I got to amuse myself with my new blue Nintendo DS. The nurse checked my blood sugar level and asked me: "Did you have dessert last night?" Knowing that I was not supposed to eat or drink in the past 8 hours, I made it a point to emphasize that I obeyed the rules, and, in addition, did not have any dessert. She then asked me what I ate the night before. I told her, "Extremely spicy Mandarin Beef." Anyhow, the level was a tad high, but within acceptable range.
She then injected the radioactive sugar and I asked her whether it was made at Lawrence Livermore Labs (since they have a cyclotron there). Apparently, everyone, including Livermore Labs, gets their Pet-CT sugar from a specialized place in Gilroy that makes nothing else.
Then, I was to sit back and relax in this dark, and small room with an extremely comfy recliner. I fell asleep quickly, and had dreams where I was waiting in a dark Pet-CT room on a comfy recliner... except, the lights in the room were on and I didn't turn them on... I was panicking. I could turn them off, but then I would have to move. But, if I didn't turn them off, the nurse would come back and yell at me for turning them on in the first place. I would then wake up, fall asleep again, and have variations of the same dream.
Then, after I was good and asleep, the nurse woke me up and told me to climb in the machine. A few minutes after the scan started, I fell asleep again. I mean, you can't wake someone up in deep REM and expect them to remain awake as you instruct them to lie down and remain perfectly still for 25 minutes. It's just not going to happen. Then problem was that there was microphones in the machine, so that the operator can talk to the patient. That was a problem because I caught myself snoring several times. Yes, I was snoring in the Pet-CT machine. The poor nurse... she probably had to put me on mute.
Oh, and after the scan, the nurse asked me about my occupation. I told her I was a student, and she asked me when the fall semester started. I didn't realize it until then, but it was today. That kind of bummed me out.
Anyhow... that's it for the scan. We'll find out the results tomorrow.
Now, I know you all are just begging to elaborate further on my Nintendo DS. So, to appease the masses, I will do so now... It is super-awesome! I haven't been as excited about a toy like this for years now. The funny part is, I wasn't too excited about it as I purchased it -- I had to play it a bit to really appreciate it.
(By the way, for the sake of record, Liz made me do it. So, I'm completely guilt-free for spending money on a toy.) :)
I even got "Guitar Hero" for the DS -- which requires a strange little fretboard attachment. Then you take this stylus/pick and strum along to the music on the video game screen -- super cool.
So, consider myself suitable distracted from all sorts of worries. I find comfort in the fact that, no matter where I am, I have complete freedom from boredom. Plus, having that thing in the hospital bed will help tremendously.
Oh, and one last thing before I go... Last night, I had a huge craving for something spicy! Maybe it's the chemo; maybe it's my taste buds losing sensitivity. Anyhow, we went for Chinese, and I asked them to make my Mandarin beef extra spicy. They failed: it was pretty mild. But, they did include a bowl of pure Chinese pepper seed sauce. I dumped the whole thing on the beef and stirred it in. When the waiter returned, he was flabbergasted: "You put the whole thing in?!" It was awesome.
As I ate more and more, the beef got hotter and hotter. Eventually, I reached painfully hot. It was great, and exactly what I wanted. I'm not usually into spicy foods, nor is my tolerance exemplary. Maybe it is the chemo.
I just returned from my third Pet-CT scan! I'll just reiterate: This one is especially important because it determines whether I will be able to go to Stanford for their BMT program. There better be some progress! Naturally, I am sitting on the edge of my seat... metaphorically speaking. I find out the results tomorrow, and the next step of the big plan. That'll be an important day.
The scan went well. Liz and I set two alarms because we were paranoid that something might make us miss this critical appointment, and I arrived there way early -- which was fine, because I got to amuse myself with my new blue Nintendo DS. The nurse checked my blood sugar level and asked me: "Did you have dessert last night?" Knowing that I was not supposed to eat or drink in the past 8 hours, I made it a point to emphasize that I obeyed the rules, and, in addition, did not have any dessert. She then asked me what I ate the night before. I told her, "Extremely spicy Mandarin Beef." Anyhow, the level was a tad high, but within acceptable range.
She then injected the radioactive sugar and I asked her whether it was made at Lawrence Livermore Labs (since they have a cyclotron there). Apparently, everyone, including Livermore Labs, gets their Pet-CT sugar from a specialized place in Gilroy that makes nothing else.
Then, I was to sit back and relax in this dark, and small room with an extremely comfy recliner. I fell asleep quickly, and had dreams where I was waiting in a dark Pet-CT room on a comfy recliner... except, the lights in the room were on and I didn't turn them on... I was panicking. I could turn them off, but then I would have to move. But, if I didn't turn them off, the nurse would come back and yell at me for turning them on in the first place. I would then wake up, fall asleep again, and have variations of the same dream.
Then, after I was good and asleep, the nurse woke me up and told me to climb in the machine. A few minutes after the scan started, I fell asleep again. I mean, you can't wake someone up in deep REM and expect them to remain awake as you instruct them to lie down and remain perfectly still for 25 minutes. It's just not going to happen. Then problem was that there was microphones in the machine, so that the operator can talk to the patient. That was a problem because I caught myself snoring several times. Yes, I was snoring in the Pet-CT machine. The poor nurse... she probably had to put me on mute.
Oh, and after the scan, the nurse asked me about my occupation. I told her I was a student, and she asked me when the fall semester started. I didn't realize it until then, but it was today. That kind of bummed me out.
Anyhow... that's it for the scan. We'll find out the results tomorrow.
Now, I know you all are just begging to elaborate further on my Nintendo DS. So, to appease the masses, I will do so now... It is super-awesome! I haven't been as excited about a toy like this for years now. The funny part is, I wasn't too excited about it as I purchased it -- I had to play it a bit to really appreciate it.
(By the way, for the sake of record, Liz made me do it. So, I'm completely guilt-free for spending money on a toy.) :)
I even got "Guitar Hero" for the DS -- which requires a strange little fretboard attachment. Then you take this stylus/pick and strum along to the music on the video game screen -- super cool.
So, consider myself suitable distracted from all sorts of worries. I find comfort in the fact that, no matter where I am, I have complete freedom from boredom. Plus, having that thing in the hospital bed will help tremendously.
Oh, and one last thing before I go... Last night, I had a huge craving for something spicy! Maybe it's the chemo; maybe it's my taste buds losing sensitivity. Anyhow, we went for Chinese, and I asked them to make my Mandarin beef extra spicy. They failed: it was pretty mild. But, they did include a bowl of pure Chinese pepper seed sauce. I dumped the whole thing on the beef and stirred it in. When the waiter returned, he was flabbergasted: "You put the whole thing in?!" It was awesome.
As I ate more and more, the beef got hotter and hotter. Eventually, I reached painfully hot. It was great, and exactly what I wanted. I'm not usually into spicy foods, nor is my tolerance exemplary. Maybe it is the chemo.
Saturday, August 9, 2008
[8-09-08] Stanford BMT Appt.
[10:06am]
Now to say a few words about the Friday appointment: crazy, overwhelming, emotionally draining, and fascinating. At first, I thought that the BMT was a pretty big deal. Then, with a bit more research, I realized that it was a really big deal. Now, after this last appointment, I realize that it is a tremendously HUGE and immense life-changing ordeal!
I'll begin with the day before the appointment...
After my final presentation, and my sister's kind words on my last blog entry, I was struck with the desire to hang out with mi familia. It made sense: I had to work on my final term paper, but we would all be heading to Stanford on Friday, so I could just return to Berkeley then. A quick, one day vacation.
It was really awesome that Jen picked me up -- we basically talked the whole drive to Santa Cruz about all sorts of things. It was fun. Then, upon hearing that I was in the car, Dan called and asked Jen: "Yes, but what about beer? Should I get beer?" Dan's a guuuuud boooi. :)
When we arrived, not only was beer on the agenda, I found Corralitos Meat Market sausages and hanging tender on the kitchen counter. I was truly stoked! I know it must mean I'm simple or something, but this formula will ALWAYS work: beer + meat = happy. It has never failed. Hmm, now that I think about it, in many ways, I am simple-folk. I like that. Makes things easier.
Anyways, to my surprise, Jen said: "Why don't you guys go out and get a pitcher or something?" A rare recommendation. Dutifully, we obliged her. When I commented to Dan about how unique this this explicit (with plural, implied) pitcher permission was, he commented: "Well, it's not like it took having terminal cancer to get her to give it." We laughed. [Note to the casual observer: Dan loves Jen more than the world, and he is not belittling my condition. He has an ironic sense of humor that spits in face of convention and mocks the notion of "politically correct." I love it -- he makes me laugh more than anyone else.]
After a few pitchers, Dan commented about how he thought that I wouldn't be able to drink after my first ICE treatment. I expected the same. He then said: "Well, I'm glad we were able to pull this one from the Devil's teeth." That's such a great expression. We then proceeded to get drunk.
That night, for the first time, I experienced the dreadful "neupogen bone pain" that I've heard so much about. It was so annoying! When I stood up, my right knee felt better. The *instant* I lied down, it started to hurt, internally. It made sleep impossible. So strange.
The next day, Barbara, Jen and I got in the car and headed to Stanford. The first appointment, at 11:30am, was with the social worker.
11:30am: The Social Worker.
She was a friendly young woman with an upbeat and cheery disposition. Very disarming. She asked some simple questions at first, but began to probe deeper until Barbara (very wisely) excused herself to allow us to have a private discussion. It was then that she became a savage: tearing through the meat of my emotional and psychological past until I remained little more than a stack of discarded bones on the linoleum floor. She wanted every last detail. Her notes scribbled my most intimate fears, weakest moments, and shame. [I understand, though. She was nice, and she needed to assess my psychological durability.] When Jen and Barbara returned, I was visibly shaken.
She also talked about the Leukemia and Lymphoma Society. Apparently, they are willing to re-reimburse up to $500 for travel and parking expenses to Stanford. I found it profoundly strange! I'm not supposed to be on the receiving end of that charity!! Ever since my diagnosis, I made it a routine habit to deposit all of my available quarters into those little "quarter-collecting" posters with a picture of a kid on it. I'm not that kid!! Yet more irony. At the Korean BBQ place that I frequent, my spicy chicken would cost exactly $6.50. That means, each time, I spend $7.00 and deposit two quarters into the poster. Next time, I'm going to spend $6.00, and pay for the remainder with two quarters out of the poster. I mean, at this point, it seems sorta silly to put those quarters in the cardboard -- kinda like me trying to deduct donations to the "Austin Spicy Chicken Charity" on my tax return. Hmm, now that I think about it, for each trip to Stanford the LLS buys me a spicy chicken. Nice!
1:30pm: The Doctor.
There were four things that I wanted to hear from the doctor: 1> Radiation was part of the game-plan, 2> Event-free-survival was around Northwestern's 80%, 3> that Stanford was undoubtedly superior to everyone else in the whole world for the treatment of Hodgkin's lymphoma, and 4> Whatever questions Barbara asked, the doctor would be able to handle. She performed with flying colors. I especially liked the part where Barbara handed her the Northwestern study. She immersed herself into the details of the study, noted the findings, and commented on them. She kept the study after the appointment was over. I like having an academic (assistant professor) for a doctor.
Then, the doctor spent some more time detailing the game-plan. I'll save the details for tomorrow's post. Nevertheless, she wanted to stress that it was going to be HARD! I'll be covered with mouth-sores, unable to eat for a time, my GI tract will turn to mush, diarrhea, constipation, vomiting, pain, infertility, 6-9months recovery, etc, etc, etc... It's laughable that I thought, even for the slightest moment, that school was even a remote possibility through all of this. Indeed, when my school counselors learn of the BMT, they ask: "So, will you be taking a reduced course load through all of this?" They had no idea. And apparently, neither did I.
The good thing, is that we were all satisfied that Stanford BMT was a damn good place to be. So, we won't be needing to go to Northwestern.
3:00pm: The Nurse.
The last appointment was with the nurse scheduler/liason. Her role was to facilitate communications and scheduling between myself, my local oncologist/radiologist, and Stanford BMT. She handed me a *huge* folder with a copy of the "Autologous BMT Patient Guide," and was positively thrilled when I promptly told her that I already read the whole thing online. That made her job easier. So, instead of talking about what I already knew, I tried to spend some time convincing her to be highly aggressive (low interval) between treatments. In and out: I want no period of time to exist where I go for more than two weeks without chemo or radiation. Two steps forward, one step back. Not vice versa. I did my best, but it looks like there might be a period of 3-4 weeks with no treatment.
Then things went sour.
She began to talk about some required tests that needed to be performed before I be admitted inpatient.
I knew exactly what she was getting at, and I didn't like it one bit. At this point, the color drained from my face, and I could feel my pulse jump. My palms began to sweat, and I felt that "fight-or-flight" response. I remember at being amazed at my drastic physiological response to something that had not yet been said.
At that point, I wanted to choke her. Anything to keep her from saying IT. I was irrationally angry! I couldn't believe it! I don't get angry! [Note: I would like to apologize to the nurse for thinking such thoughts. Let it be known that I would never do anything like that. I have the greatest respect for her profession, I appreciate what she is doing for me, and I respect and like her as a person.] I was just regressing to a little raccoon that had been trapped into a corner. It was instinctive reaction.
For the sake of truth and journalistic integrity, I have to further document my feelings regarding those last few words. I was fucking terrified. Yes, that adjective is absolutely mandatory for the precision of that statement. If I were in a court of law, and I was asked "how I felt" in front of Grandmother and my wonderful nieces, I would say: "I was fucking terrified." The omission of that critical adjective would be perjury.
I think that was the first time in my life that I felt fear. I have never, past the age of 7 or so, been so afraid of physical pain that I was pushed to tears. When I was in the office, my eyes were watery and I was actually trying not to cry. A strange feeling. Even now, the fear is so great that I find my eyes starting to glisten with just the recount of this memory. To put this in perspective, I cry an average of about two tears every three years. Granted, this year has been especially tough -- so far I count about 3 or 4 tears in the past six months.
I think I've sufficiently established that the bone marrow biopsy is a painful procedure. Nevertheless, for my own personal catharsis, I will continue to elaborate.
The first time you get a bone marrow biopsy, it is just a necessary procedure. You sign the form, and it gets done without any drama. This is because the nurses know that you have no idea what to expect. The second time you get a bone marrow biopsy, there is a hushed and formal tension about the office. The nurses know that you have received one before, and they know that you know what you are about to be subjected to. That changes things. Is it pity the nurses feel? You get your vitals and bloodwork: "I see you have a biopsy today... Good luck." You get escorted to the doctor's office by another nurse. She looks at your chart and gives you a sympathetic smile. When the doctor is finished talking, he looks down, and with a sad and reluctant tone, says: "It's time for your biopsy." As if kicking puppies were a necessary part to successful oncology. After the procedure is finished, the nurse tries to make small talk by asking the ridiculous question: "Was it easier knowing what to expect? Or harder?" And lastly, the nurse who originally escorted me into the office asks, "How do you feel now that it's over?" The second time is far different than the first.
However, my first biopsy wasn't all that bad. Yes, it was excruciating, but it was nothing like the second. Perhaps it was because he couldn't get through the bone on the first try, and had to try a different area. I do have thick bones. I really don't know why the second time was so much worse. Maybe other cancer patients usually have an easier time with the biopsy. I mean, I've never seen anyone complain this much about a bone marrow biopsy before. Frankly, I think it is absolutely unethical to subject patients to that amount of enduring psychological trauma. Yes, I think we can all agree I'm somewhat traumatized.
I remember the procedure and the pain. I remember my eyes leaking for some reason... they don't do that. I wasn't crying, I couldn't cry -- they were just leaking (2 of 4 tears for the year right there). For the first biopsy, I made the occasional squeaks or grunting sounds. This time, sound was not possible. I remember moments where there was flashes of white. Then I started to vibrate; not shake... vibrate. I felt like an animal at the butcher's going into shock. I remember the nurse putting a comforting hand on my shoulder to ease the trembling. She will never, ever, be able to comprehend how much that meant to me. I am overwhelmed with gratitude for that, even now. This was not a friend, family, or loved one: this was a nurse, a paid employee, who simply conveyed through physical touch, "I know this sucks for you. There, there." She became a permanent friend right then and there.
After it was over, I felt an overwhelming sense of relief and happiness. I was giddy. "Without suffering, there is no happiness." I remember saying to the nurse, "That wasn't so bad." I really have no idea why I said that. Maybe I was trying to convince myself that it wasn't. Maybe I thought that if I did not scream, then it wasn't a 10 on the pain scale. I didn't scream, and I was proud of that. Regardless, the nurse have me a serious look and said, "No, that looked pretty bad."
I don't think I can handle that again. I need to find a doctor who will do a biopsy with morphine, fentanyl, pre-sedation or all of the above. I will go to a ridiculous extent to prevent that sort of pain again.
Back to Stanford BMT. After the nurse mentioned the biopsy, and I tried to argue that "I just got one a week ago," I remember the visibly angry or outraged look on my sister's face. Amidst all the emotion, I remember feeling a lot of love for my sister right there.
I'm drained. I'll write more about the day tomorrow.
Now to say a few words about the Friday appointment: crazy, overwhelming, emotionally draining, and fascinating. At first, I thought that the BMT was a pretty big deal. Then, with a bit more research, I realized that it was a really big deal. Now, after this last appointment, I realize that it is a tremendously HUGE and immense life-changing ordeal!
I'll begin with the day before the appointment...
After my final presentation, and my sister's kind words on my last blog entry, I was struck with the desire to hang out with mi familia. It made sense: I had to work on my final term paper, but we would all be heading to Stanford on Friday, so I could just return to Berkeley then. A quick, one day vacation.
It was really awesome that Jen picked me up -- we basically talked the whole drive to Santa Cruz about all sorts of things. It was fun. Then, upon hearing that I was in the car, Dan called and asked Jen: "Yes, but what about beer? Should I get beer?" Dan's a guuuuud boooi. :)
When we arrived, not only was beer on the agenda, I found Corralitos Meat Market sausages and hanging tender on the kitchen counter. I was truly stoked! I know it must mean I'm simple or something, but this formula will ALWAYS work: beer + meat = happy. It has never failed. Hmm, now that I think about it, in many ways, I am simple-folk. I like that. Makes things easier.
Anyways, to my surprise, Jen said: "Why don't you guys go out and get a pitcher or something?" A rare recommendation. Dutifully, we obliged her. When I commented to Dan about how unique this this explicit (with plural, implied) pitcher permission was, he commented: "Well, it's not like it took having terminal cancer to get her to give it." We laughed. [Note to the casual observer: Dan loves Jen more than the world, and he is not belittling my condition. He has an ironic sense of humor that spits in face of convention and mocks the notion of "politically correct." I love it -- he makes me laugh more than anyone else.]
After a few pitchers, Dan commented about how he thought that I wouldn't be able to drink after my first ICE treatment. I expected the same. He then said: "Well, I'm glad we were able to pull this one from the Devil's teeth." That's such a great expression. We then proceeded to get drunk.
That night, for the first time, I experienced the dreadful "neupogen bone pain" that I've heard so much about. It was so annoying! When I stood up, my right knee felt better. The *instant* I lied down, it started to hurt, internally. It made sleep impossible. So strange.
The next day, Barbara, Jen and I got in the car and headed to Stanford. The first appointment, at 11:30am, was with the social worker.
11:30am: The Social Worker.
She was a friendly young woman with an upbeat and cheery disposition. Very disarming. She asked some simple questions at first, but began to probe deeper until Barbara (very wisely) excused herself to allow us to have a private discussion. It was then that she became a savage: tearing through the meat of my emotional and psychological past until I remained little more than a stack of discarded bones on the linoleum floor. She wanted every last detail. Her notes scribbled my most intimate fears, weakest moments, and shame. [I understand, though. She was nice, and she needed to assess my psychological durability.] When Jen and Barbara returned, I was visibly shaken.
She also talked about the Leukemia and Lymphoma Society. Apparently, they are willing to re-reimburse up to $500 for travel and parking expenses to Stanford. I found it profoundly strange! I'm not supposed to be on the receiving end of that charity!! Ever since my diagnosis, I made it a routine habit to deposit all of my available quarters into those little "quarter-collecting" posters with a picture of a kid on it. I'm not that kid!! Yet more irony. At the Korean BBQ place that I frequent, my spicy chicken would cost exactly $6.50. That means, each time, I spend $7.00 and deposit two quarters into the poster. Next time, I'm going to spend $6.00, and pay for the remainder with two quarters out of the poster. I mean, at this point, it seems sorta silly to put those quarters in the cardboard -- kinda like me trying to deduct donations to the "Austin Spicy Chicken Charity" on my tax return. Hmm, now that I think about it, for each trip to Stanford the LLS buys me a spicy chicken. Nice!
1:30pm: The Doctor.
There were four things that I wanted to hear from the doctor: 1> Radiation was part of the game-plan, 2> Event-free-survival was around Northwestern's 80%, 3> that Stanford was undoubtedly superior to everyone else in the whole world for the treatment of Hodgkin's lymphoma, and 4> Whatever questions Barbara asked, the doctor would be able to handle. She performed with flying colors. I especially liked the part where Barbara handed her the Northwestern study. She immersed herself into the details of the study, noted the findings, and commented on them. She kept the study after the appointment was over. I like having an academic (assistant professor) for a doctor.
Then, the doctor spent some more time detailing the game-plan. I'll save the details for tomorrow's post. Nevertheless, she wanted to stress that it was going to be HARD! I'll be covered with mouth-sores, unable to eat for a time, my GI tract will turn to mush, diarrhea, constipation, vomiting, pain, infertility, 6-9months recovery, etc, etc, etc... It's laughable that I thought, even for the slightest moment, that school was even a remote possibility through all of this. Indeed, when my school counselors learn of the BMT, they ask: "So, will you be taking a reduced course load through all of this?" They had no idea. And apparently, neither did I.
The good thing, is that we were all satisfied that Stanford BMT was a damn good place to be. So, we won't be needing to go to Northwestern.
3:00pm: The Nurse.
The last appointment was with the nurse scheduler/liason. Her role was to facilitate communications and scheduling between myself, my local oncologist/radiologist, and Stanford BMT. She handed me a *huge* folder with a copy of the "Autologous BMT Patient Guide," and was positively thrilled when I promptly told her that I already read the whole thing online. That made her job easier. So, instead of talking about what I already knew, I tried to spend some time convincing her to be highly aggressive (low interval) between treatments. In and out: I want no period of time to exist where I go for more than two weeks without chemo or radiation. Two steps forward, one step back. Not vice versa. I did my best, but it looks like there might be a period of 3-4 weeks with no treatment.
Then things went sour.
She began to talk about some required tests that needed to be performed before I be admitted inpatient.
"There's a pulmonary function test... that's easy. Then there's the MUGA scan... that's relatively easy..."
I knew exactly what she was getting at, and I didn't like it one bit. At this point, the color drained from my face, and I could feel my pulse jump. My palms began to sweat, and I felt that "fight-or-flight" response. I remember at being amazed at my drastic physiological response to something that had not yet been said.
"The pet-CT scan... you're familiar with that. Also pretty easy..."
At that point, I wanted to choke her. Anything to keep her from saying IT. I was irrationally angry! I couldn't believe it! I don't get angry! [Note: I would like to apologize to the nurse for thinking such thoughts. Let it be known that I would never do anything like that. I have the greatest respect for her profession, I appreciate what she is doing for me, and I respect and like her as a person.] I was just regressing to a little raccoon that had been trapped into a corner. It was instinctive reaction.
"And last, there's the bone marrow biopsy. That's hard."
For the sake of truth and journalistic integrity, I have to further document my feelings regarding those last few words. I was fucking terrified. Yes, that adjective is absolutely mandatory for the precision of that statement. If I were in a court of law, and I was asked "how I felt" in front of Grandmother and my wonderful nieces, I would say: "I was fucking terrified." The omission of that critical adjective would be perjury.
I think that was the first time in my life that I felt fear. I have never, past the age of 7 or so, been so afraid of physical pain that I was pushed to tears. When I was in the office, my eyes were watery and I was actually trying not to cry. A strange feeling. Even now, the fear is so great that I find my eyes starting to glisten with just the recount of this memory. To put this in perspective, I cry an average of about two tears every three years. Granted, this year has been especially tough -- so far I count about 3 or 4 tears in the past six months.
I think I've sufficiently established that the bone marrow biopsy is a painful procedure. Nevertheless, for my own personal catharsis, I will continue to elaborate.
The first time you get a bone marrow biopsy, it is just a necessary procedure. You sign the form, and it gets done without any drama. This is because the nurses know that you have no idea what to expect. The second time you get a bone marrow biopsy, there is a hushed and formal tension about the office. The nurses know that you have received one before, and they know that you know what you are about to be subjected to. That changes things. Is it pity the nurses feel? You get your vitals and bloodwork: "I see you have a biopsy today... Good luck." You get escorted to the doctor's office by another nurse. She looks at your chart and gives you a sympathetic smile. When the doctor is finished talking, he looks down, and with a sad and reluctant tone, says: "It's time for your biopsy." As if kicking puppies were a necessary part to successful oncology. After the procedure is finished, the nurse tries to make small talk by asking the ridiculous question: "Was it easier knowing what to expect? Or harder?" And lastly, the nurse who originally escorted me into the office asks, "How do you feel now that it's over?" The second time is far different than the first.
However, my first biopsy wasn't all that bad. Yes, it was excruciating, but it was nothing like the second. Perhaps it was because he couldn't get through the bone on the first try, and had to try a different area. I do have thick bones. I really don't know why the second time was so much worse. Maybe other cancer patients usually have an easier time with the biopsy. I mean, I've never seen anyone complain this much about a bone marrow biopsy before. Frankly, I think it is absolutely unethical to subject patients to that amount of enduring psychological trauma. Yes, I think we can all agree I'm somewhat traumatized.
I remember the procedure and the pain. I remember my eyes leaking for some reason... they don't do that. I wasn't crying, I couldn't cry -- they were just leaking (2 of 4 tears for the year right there). For the first biopsy, I made the occasional squeaks or grunting sounds. This time, sound was not possible. I remember moments where there was flashes of white. Then I started to vibrate; not shake... vibrate. I felt like an animal at the butcher's going into shock. I remember the nurse putting a comforting hand on my shoulder to ease the trembling. She will never, ever, be able to comprehend how much that meant to me. I am overwhelmed with gratitude for that, even now. This was not a friend, family, or loved one: this was a nurse, a paid employee, who simply conveyed through physical touch, "I know this sucks for you. There, there." She became a permanent friend right then and there.
After it was over, I felt an overwhelming sense of relief and happiness. I was giddy. "Without suffering, there is no happiness." I remember saying to the nurse, "That wasn't so bad." I really have no idea why I said that. Maybe I was trying to convince myself that it wasn't. Maybe I thought that if I did not scream, then it wasn't a 10 on the pain scale. I didn't scream, and I was proud of that. Regardless, the nurse have me a serious look and said, "No, that looked pretty bad."
I don't think I can handle that again. I need to find a doctor who will do a biopsy with morphine, fentanyl, pre-sedation or all of the above. I will go to a ridiculous extent to prevent that sort of pain again.
Back to Stanford BMT. After the nurse mentioned the biopsy, and I tried to argue that "I just got one a week ago," I remember the visibly angry or outraged look on my sister's face. Amidst all the emotion, I remember feeling a lot of love for my sister right there.
I'm drained. I'll write more about the day tomorrow.
Friday, August 1, 2008
[8-01-08] Blood counts are in...
I'm anemic! Woo hoo!
It's classified as anything under 13g/DL for hemoglobin.
Normal Range for RBC: 4.7-6.1M/uL
Normal Range for Hemoglobin: 14-18G/DL
7/30: 14.2g/DL, RBC: 4.50M/uL
7/31: 13.7g/DL, RBC: 4.36M/uL
8/01: 12.4g/DL, RBC: 3.92M/uL
That's shooting down way faster than it did for Stanford V! Interesting.
As for my white blood counts, well, they're going up for some reason. I have no clue why, but also interesting. Maybe they drop in what's called the "nadir."
I know it's strange to look at these life numbers as a game, but it's fun to guess.
I mean, my white blood cells have continued to rise -- when will the rise turn south? The hemoglobin appears to be increasing the rate of reduction, but you also have to account for diminishing returns. Knowing that, what will it be tomorrow? My guess is 11.4g/DL, any takers? Fascinating.
It's classified as anything under 13g/DL for hemoglobin.
Normal Range for RBC: 4.7-6.1M/uL
Normal Range for Hemoglobin: 14-18G/DL
7/30: 14.2g/DL, RBC: 4.50M/uL
7/31: 13.7g/DL, RBC: 4.36M/uL
8/01: 12.4g/DL, RBC: 3.92M/uL
That's shooting down way faster than it did for Stanford V! Interesting.
As for my white blood counts, well, they're going up for some reason. I have no clue why, but also interesting. Maybe they drop in what's called the "nadir."
I know it's strange to look at these life numbers as a game, but it's fun to guess.
I mean, my white blood cells have continued to rise -- when will the rise turn south? The hemoglobin appears to be increasing the rate of reduction, but you also have to account for diminishing returns. Knowing that, what will it be tomorrow? My guess is 11.4g/DL, any takers? Fascinating.
Wednesday, July 30, 2008
[7-30-08] ICE, ICE, Baby!
I still need to outline the current plan.
There will be 2 to 4 cycles of ICE treatment, each time requiring 4 days of hospitalization. Based on how I handle the first cycle, the interval between cycles will be determined: 2 weeks, or 3 weeks. After two cycles, my progress will be determined with a pet-CT scan. If scans are clean, then I will start the BMT at Stanford. Otherwise (provided that there is at least some progress), ICE treatment will continue for 2 more cycles. When it is time for the Stanford BMT, I'll be in-patient for about a month (due to whopping dose of chemo and no white blood cells). Then I'm cured, and I can proceed to celebrate.
[1:02pm]
Today is Christmas. In that I was really looking forward to getting started, and moving forward. I mean, this is basically the first day of my new life, you know? How things go today will indicate how things will be for the next few months. That's a pretty big deal.
Will I handle the chemo well? Will I have a good time in the hospital? Will it be like a little vacation? I wonder all of these things. Today, I will be able to add the first data point. From that, I can begin to extrapolate all sorts of crazy predictions... but, before I can do that, I need at lease one data point. That is today.
So far, it's been pretty anti-climactic. In a way, I expected all sorts of rush and activity when I arrived, but it quickly got pretty calm.
Ooh, the ICE-machine is here..
[4:42pm]
Just got through with the MUGA (pronounced: "muh-ga") scan. Apparently, they need to make sure my heart can handle the chemo. It's pretty much the same as the MRI, CT scan, and pet-CT scan, in that you enter some white tunnel-type thing and hold your arms over your head until they turn blue. The machine here at Sutter is way cooler than any I have seen -- there's this beautiful back-lit photograph of several cherry blossom trees in bloom. Very nice.
I have a CT scan and some sort of lung test remaining. However, the doctor told me that we are proceeding with chemo despite the fact that I still have tests remaining -- better to not delay the scheduled chemo. Right now I'm on IV hydration in preparation for the chemo. Apparently, I need to have lots of fluids for ICE: there's the threat of hemorrhagic cystitis with symptoms mimicking that of a urinary tract infection. Bleeing Pud. Eww
Anyhow, ifosfamide ETA: 2 hours. I missed chemo :P
[6:00pm]
Yahoooo! I'm SO hungry, but Liz is coming with TACO BELL!!! I am so stoked right now. Mmmmmm fooooood. It is christmas!
There will be 2 to 4 cycles of ICE treatment, each time requiring 4 days of hospitalization. Based on how I handle the first cycle, the interval between cycles will be determined: 2 weeks, or 3 weeks. After two cycles, my progress will be determined with a pet-CT scan. If scans are clean, then I will start the BMT at Stanford. Otherwise (provided that there is at least some progress), ICE treatment will continue for 2 more cycles. When it is time for the Stanford BMT, I'll be in-patient for about a month (due to whopping dose of chemo and no white blood cells). Then I'm cured, and I can proceed to celebrate.
[1:02pm]
Today is Christmas. In that I was really looking forward to getting started, and moving forward. I mean, this is basically the first day of my new life, you know? How things go today will indicate how things will be for the next few months. That's a pretty big deal.
Will I handle the chemo well? Will I have a good time in the hospital? Will it be like a little vacation? I wonder all of these things. Today, I will be able to add the first data point. From that, I can begin to extrapolate all sorts of crazy predictions... but, before I can do that, I need at lease one data point. That is today.
So far, it's been pretty anti-climactic. In a way, I expected all sorts of rush and activity when I arrived, but it quickly got pretty calm.
Ooh, the ICE-machine is here..
[4:42pm]
Just got through with the MUGA (pronounced: "muh-ga") scan. Apparently, they need to make sure my heart can handle the chemo. It's pretty much the same as the MRI, CT scan, and pet-CT scan, in that you enter some white tunnel-type thing and hold your arms over your head until they turn blue. The machine here at Sutter is way cooler than any I have seen -- there's this beautiful back-lit photograph of several cherry blossom trees in bloom. Very nice.
I have a CT scan and some sort of lung test remaining. However, the doctor told me that we are proceeding with chemo despite the fact that I still have tests remaining -- better to not delay the scheduled chemo. Right now I'm on IV hydration in preparation for the chemo. Apparently, I need to have lots of fluids for ICE: there's the threat of hemorrhagic cystitis with symptoms mimicking that of a urinary tract infection. Bleeing Pud. Eww
Anyhow, ifosfamide ETA: 2 hours. I missed chemo :P
[6:00pm]
Yahoooo! I'm SO hungry, but Liz is coming with TACO BELL!!! I am so stoked right now. Mmmmmm fooooood. It is christmas!
Tuesday, July 29, 2008
[7-29-08] The Big Plan
[8:51am]
Today is the big day! To say I am anxious is a bit of an understatement. I mean, I find out the big plan today. Will I be able to continue school? How long will I be hospitalized? How long will the treatment last? Is it a harsh treatment? Can I get total-lymphoid irradiation? Pretty pleeeeeeze? All will be answered.
Which is also why my Liz and my family is going to be there. They've prepared some pretty difficult questions, and I'm under the impression that if they are not answered properly, Barbara will ship me off to Chicago. Northwestern University has pretty good experience for people in exactly my situation: non-advanced bulky Hodgkin's with primary induction failure and no previous radiation. Believe it or not, the fact that I have not had any radiation before gives me a huge statistical bump. 83% event-free survival rate! Isn't that grea... wait... How can I be happy with that? True, those are the best odds I've heard for those in my camp. But, those are worse odds than playing Russian roulette with a 6-shooter.
Oh well, when life gives you lemons, you should go to Northwestern and be happy with the odds you're given.
[5:00pm]
Ok, the master plan is in. I think it is a good one and Stanford may work out fine. Ok, everyone is back at the hotel. I'm gonna write more later -- right now is time to drink and have fun.
Today is the big day! To say I am anxious is a bit of an understatement. I mean, I find out the big plan today. Will I be able to continue school? How long will I be hospitalized? How long will the treatment last? Is it a harsh treatment? Can I get total-lymphoid irradiation? Pretty pleeeeeeze? All will be answered.
Which is also why my Liz and my family is going to be there. They've prepared some pretty difficult questions, and I'm under the impression that if they are not answered properly, Barbara will ship me off to Chicago. Northwestern University has pretty good experience for people in exactly my situation: non-advanced bulky Hodgkin's with primary induction failure and no previous radiation. Believe it or not, the fact that I have not had any radiation before gives me a huge statistical bump. 83% event-free survival rate! Isn't that grea... wait... How can I be happy with that? True, those are the best odds I've heard for those in my camp. But, those are worse odds than playing Russian roulette with a 6-shooter.
Oh well, when life gives you lemons, you should go to Northwestern and be happy with the odds you're given.
[5:00pm]
Ok, the master plan is in. I think it is a good one and Stanford may work out fine. Ok, everyone is back at the hotel. I'm gonna write more later -- right now is time to drink and have fun.
Wednesday, February 6, 2008
[2-6-08] Muga Scan
[7:20am]
Here I am at the hospital for the "Muga Scan." It's in the department of "Nuclear Medicine." That sounds so cool.
My guess is that they inject me with some sort of radioactive dye, which gives the scanning machines a real-time view of my heart in action.
[8:50am]
Sheesh! Long wait! When I approached the office, the lights were off. Odd, my appointment was scheduled for 8:00am. ... ... Eventually I got in.
Yep, it's a "radio-isotope." The technician made sure to point this out, and reminded me to drink a lot of water so that my "gonads remain intact." Apparently, these diagnostic machines like to foster a very intimate relationship with my 'nads.
Here I am at the hospital for the "Muga Scan." It's in the department of "Nuclear Medicine." That sounds so cool.
My guess is that they inject me with some sort of radioactive dye, which gives the scanning machines a real-time view of my heart in action.
[8:50am]
Sheesh! Long wait! When I approached the office, the lights were off. Odd, my appointment was scheduled for 8:00am.
Yep, it's a "radio-isotope." The technician made sure to point this out, and reminded me to drink a lot of water so that my "gonads remain intact." Apparently, these diagnostic machines like to foster a very intimate relationship with my 'nads.
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