[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.
Sunday, August 31, 2008
Saturday, August 30, 2008
[8-30-08] ICE, day 4
[11:33am]
Finally! The final day of ICE! Of course, I just found out that they are starting it at 8:00pm. We started around 5 yesterday, so I was hoping to keep moving the chemo up in time... guess I got my hopes up.
Anyhow, I got to meet Dr. Wexler today, so I asked her about the mysterious "maximum dose" of Ifosfamide question. Her response was that Dr. Irwin probably wrote out the first order, and Dr. Cecchi wrote the second. She continued that Dr. Irwin probably was working off of some maximum dosage per body weight, while Dr. Cecchi was using the standard surface area. Nevertheless, I don't like dose reductions. It's good I'm getting the full dose now.
It feels like my appetite is coming back... maybe it was a rough third day. I anticipate not having to beg for as much Ativan today :P Nevertheless, I am quite tired -- I think I'll go back to sleep and sleep the day away.
[7:54pm]
I did spend most of the day sleeping. That is, until my back started hurting. So I asked for some Vicodin and slept some more :P It was a good strategy.
Still, the parts of my day where I was awake was quite uneventful... In other words, boooorrrinnng.
I did manage to start playing Final Fantasy IV on the DS -- TJ may have been right to recommend this. A fresh spin on a classic game.
Today I checked the neutrophil and WBC counts and did the formula outlined in the previous post. Although my WBC went up by 0.2, my neutrophils dropped my 20% -- so my new Neutropenia number is 588. Going down...
Once I get under 500, I'm in the major leagues :P
Finally! The final day of ICE! Of course, I just found out that they are starting it at 8:00pm. We started around 5 yesterday, so I was hoping to keep moving the chemo up in time... guess I got my hopes up.
Anyhow, I got to meet Dr. Wexler today, so I asked her about the mysterious "maximum dose" of Ifosfamide question. Her response was that Dr. Irwin probably wrote out the first order, and Dr. Cecchi wrote the second. She continued that Dr. Irwin probably was working off of some maximum dosage per body weight, while Dr. Cecchi was using the standard surface area. Nevertheless, I don't like dose reductions. It's good I'm getting the full dose now.
It feels like my appetite is coming back... maybe it was a rough third day. I anticipate not having to beg for as much Ativan today :P Nevertheless, I am quite tired -- I think I'll go back to sleep and sleep the day away.
[7:54pm]
I did spend most of the day sleeping. That is, until my back started hurting. So I asked for some Vicodin and slept some more :P It was a good strategy.
Still, the parts of my day where I was awake was quite uneventful... In other words, boooorrrinnng.
I did manage to start playing Final Fantasy IV on the DS -- TJ may have been right to recommend this. A fresh spin on a classic game.
Today I checked the neutrophil and WBC counts and did the formula outlined in the previous post. Although my WBC went up by 0.2, my neutrophils dropped my 20% -- so my new Neutropenia number is 588. Going down...
Once I get under 500, I'm in the major leagues :P
Friday, August 29, 2008
[8-29-09] ICE, day 3
[8:32am]
Finally, I get to have meals that I've ordered on their little menu! I ordered scrambled eggs, with bagels, and a special request for bacon. They gave me pancakes instead of eggs. For anyone who knows me, they will know two things: 1> I loathe pancakes, and 2> My entire breakfast-eating system has effectively been shut down. The egg is a catalyst between the bread and the bacon... a necessary conduit, if you will. My only option: eat the bacon straight and be a little hungry (which is actually OK, because my appetite is waning a bit anyways). I find it remarkable how much I talk about food in this blog...
[10:33am]
Lab work is in! The results are:
WBC (White Blood Count): 1.2 (Normal 4.8 to 10.8)
RBC (Red Blood Count): 3.5 (Normal 4.7 to 6.1)
Hemoglobin: 10.7 (Normal 14 to 18)
Neutrophils: 63 (Normal 35 to 75)
I included neutrophils becuase I recently learned something called a "neutropenia score." If you are below 1000 in this score, you're neutropenic and immunosupressed.
The formula is: (Neutrophils/100) * (WBC*1000) = Neutropenia Score
So, I am: (63/100) * (1.2*1000) = .63*1200 = 756.
This means I have moderate neutropenia. With a WBC of 1.2, this would normally be severe, but my neutrophils are hanging in there at the moment (within normal range!).
As for the hemoglobin. I feel pretty ok right now, but I know from experience that once that number hits 10 or below, then things break down.
In the realm of side-effects, nausea has been more consistent with this cycle. I've asked for ativan so much, I think they're just giving it to me every four hours now. Works for me! Now the nausea hasn't shown up at all. However, food still doesn't seems appetizing. It may be time to take on the approach taught by Liz's mom: chicken noodle soup and popsicles!
As for everything else, I am doing well. Just sitting around playing "Final Fantasy XII: Revenant Wings" on my DS -- it's quite addictive.
Hopefully, I'll get chemo earlier today. I want to be able to go apartment hunting with Liz on Sunday.
[6:03pm]
Woohoo! Chemo has just started with the Cisplatin! So it looks like I'll get out of here in-time. That's good news. Interestingly, I noticed that my dose for ifosfamide was increased from 1750mg to 2200mg. That's quite a big difference if you consider that I've been getting 195mg of Cisplatin. If you've read only of my earlier posts, you'll notice this discrepancy...
The maximum dose for Ifosfamide is 1000mg/m^2. My surface area is 2.2m^2, thus I should achieve 2200mg of Ifosfamide. When I questioned the nurses as to why I was receiving 1750mg, they speculated about maximum dose in such a short time (such as 7000mg). I am skeptical... why, then, am I now able to have 8800mg in four days??
Either: 1: Someone screwed up.
or: 2: They acknowledged my tolerance and decided I could handle a higher dose.
or: 3: They planned to gradually up the dose all along.
I just hope it's not #1. Or maybe Irwin's orders differed from Cecchi's. Who knows? When I looked at the chart, I saw 1750mg crossed out and replaced with 2200mg. Consider what might have happened if I had 2200mg all along? Remember that dose reduction study. Please be #2 or #3, and let all be right in the world.
This also explains why this round of chemo is rougher than the last two -- I'm getting almost 20% more chemo (by volume).
Finally, I get to have meals that I've ordered on their little menu! I ordered scrambled eggs, with bagels, and a special request for bacon. They gave me pancakes instead of eggs. For anyone who knows me, they will know two things: 1> I loathe pancakes, and 2> My entire breakfast-eating system has effectively been shut down. The egg is a catalyst between the bread and the bacon... a necessary conduit, if you will. My only option: eat the bacon straight and be a little hungry (which is actually OK, because my appetite is waning a bit anyways). I find it remarkable how much I talk about food in this blog...
[10:33am]
Lab work is in! The results are:
WBC (White Blood Count): 1.2 (Normal 4.8 to 10.8)
RBC (Red Blood Count): 3.5 (Normal 4.7 to 6.1)
Hemoglobin: 10.7 (Normal 14 to 18)
Neutrophils: 63 (Normal 35 to 75)
I included neutrophils becuase I recently learned something called a "neutropenia score." If you are below 1000 in this score, you're neutropenic and immunosupressed.
Mild neutropenia (1000 <= ANC < 1500) — minimal risk of infection
Moderate neutropenia (500 <= ANC < 1000) — moderate risk of infection
Severe neutropenia (ANC < 500) — severe risk of infection.
The formula is: (Neutrophils/100) * (WBC*1000) = Neutropenia Score
So, I am: (63/100) * (1.2*1000) = .63*1200 = 756.
This means I have moderate neutropenia. With a WBC of 1.2, this would normally be severe, but my neutrophils are hanging in there at the moment (within normal range!).
As for the hemoglobin. I feel pretty ok right now, but I know from experience that once that number hits 10 or below, then things break down.
In the realm of side-effects, nausea has been more consistent with this cycle. I've asked for ativan so much, I think they're just giving it to me every four hours now. Works for me! Now the nausea hasn't shown up at all. However, food still doesn't seems appetizing. It may be time to take on the approach taught by Liz's mom: chicken noodle soup and popsicles!
As for everything else, I am doing well. Just sitting around playing "Final Fantasy XII: Revenant Wings" on my DS -- it's quite addictive.
Hopefully, I'll get chemo earlier today. I want to be able to go apartment hunting with Liz on Sunday.
[6:03pm]
Woohoo! Chemo has just started with the Cisplatin! So it looks like I'll get out of here in-time. That's good news. Interestingly, I noticed that my dose for ifosfamide was increased from 1750mg to 2200mg. That's quite a big difference if you consider that I've been getting 195mg of Cisplatin. If you've read only of my earlier posts, you'll notice this discrepancy...
The maximum dose for Ifosfamide is 1000mg/m^2. My surface area is 2.2m^2, thus I should achieve 2200mg of Ifosfamide. When I questioned the nurses as to why I was receiving 1750mg, they speculated about maximum dose in such a short time (such as 7000mg). I am skeptical... why, then, am I now able to have 8800mg in four days??
Either: 1: Someone screwed up.
or: 2: They acknowledged my tolerance and decided I could handle a higher dose.
or: 3: They planned to gradually up the dose all along.
I just hope it's not #1. Or maybe Irwin's orders differed from Cecchi's. Who knows? When I looked at the chart, I saw 1750mg crossed out and replaced with 2200mg. Consider what might have happened if I had 2200mg all along? Remember that dose reduction study. Please be #2 or #3, and let all be right in the world.
This also explains why this round of chemo is rougher than the last two -- I'm getting almost 20% more chemo (by volume).
Thursday, August 28, 2008
[8-28-08] ICE Cycle 3, day 2
[12:10pm]
Well, time flies when you're diagnosing computer problems. In an attempt to boost my gaming situation here at the hospital, I acquired an HD (with component video) to usb device. This was so that I could hook up my xbox 360 to my laptop.
After hours and hours of work, I actually managed to get it to work on my system (apparently it fails in xp sp3), but I managed to hack around that. To my dismay, the video quality was poor and laggy. Impossible to play games with. After further research, I discovered that it is currently impossible to do what I was trying to do -- no product is available (in HD).
Oh well, I guess I've got to bring my lcd screen to Stanford. In trying to minimize my situation, I made things terribly complicated. No xbox on lappy.
And that's been my day so far. No chemo yet -- they plan to start around 2pm, so maybe I'll get some chemo before midnight this time. I'm just a tad frustrated...
So my white blood count is at 1.6, and my nurse told me to wash my hands more, and wear a protective mask around the hospital and whatnot. I've never had it before, but it sure explains the soreness around my throat -- annoyingly painful! Just to illustrate the way things have been going around here, I asked for some of that mouthwash at 11, and received it at 8:30pm. The order for chemo was processed by 12, and I started receiving hydration for that around 9:30pm, then the chemo two hours later. Calm down Austin, it will get better.
They have a bunch of "traveling nurses" that move from one hospital to the next. Apparently, the chemo certification is out of style. That was the cause of my delay -- no chemo nurses available. As for the mouthwash, I chalk it down to inefficiency or negligence. And they actually *expect* you to turn in all your own prescriptions that your brought?!?! Ha! My Vicodin is well stashed away -- if I get some severe pain, I don't want to wait 8 hours to get relief!
My hemoglobin is slowly descending -- right now it is at 11. That explains why I still have some energy -- I know from experience that I turn into a anemic sloth at around a hemoglobin level of 10.
[12:55pm]
Lunch is right on time, five till one. I guess it makes since. Since most cancer patients probably abhor food right now, it benefits everyone else to serve us last. Then you've got the young buck with Hodgkin's to screw everything up.
Headache, headache, headache... This is the fourth day in a row that I've had to deal with an annoying headache. If I didn't know any better, I would say that I'm stressed! But that's just not true. I should be, but I'm not. Anyhow, maybe if I score some coffee things will get better. Apparently, it dilates the blood vessels on your head or something.
[2:14pm]
On the topic of "magic mouthwash." Let it be known that I feel apprehension in describing a perfectly proven form of Western medicine in a manner fit for mystical treatment. Every time I say, "Please, could you get me some of that numbing mouthwash?" The nurse says, "Oh, the magic mouthwash. Sure thing." I've tried several times. Sometimes they get confused if I describe it in any other term.
Accordingly, I have been forced to relent. Still, a bit of my soul is chipped away each time I say the term "magic."
On another note, the big boss (oncology manager) came to visit me to ask me if I was being cared for properly. Mwa ha ha I got to relate my horror story about waiting 8 hours for relief medication, and 9 hours for chemo. It felt good.
I also wanted to say a few words about my internet friend Bekah. She just completed a bone marrow transplant, and found out a few days ago that the treatment has failed. The remaining options are not as promising. That sucks. In a way, I feel like we're peers; I kinda look up to her. I hope for the best.
Well, time flies when you're diagnosing computer problems. In an attempt to boost my gaming situation here at the hospital, I acquired an HD (with component video) to usb device. This was so that I could hook up my xbox 360 to my laptop.
After hours and hours of work, I actually managed to get it to work on my system (apparently it fails in xp sp3), but I managed to hack around that. To my dismay, the video quality was poor and laggy. Impossible to play games with. After further research, I discovered that it is currently impossible to do what I was trying to do -- no product is available (in HD).
Oh well, I guess I've got to bring my lcd screen to Stanford. In trying to minimize my situation, I made things terribly complicated. No xbox on lappy.
And that's been my day so far. No chemo yet -- they plan to start around 2pm, so maybe I'll get some chemo before midnight this time. I'm just a tad frustrated...
So my white blood count is at 1.6, and my nurse told me to wash my hands more, and wear a protective mask around the hospital and whatnot. I've never had it before, but it sure explains the soreness around my throat -- annoyingly painful! Just to illustrate the way things have been going around here, I asked for some of that mouthwash at 11, and received it at 8:30pm. The order for chemo was processed by 12, and I started receiving hydration for that around 9:30pm, then the chemo two hours later. Calm down Austin, it will get better.
They have a bunch of "traveling nurses" that move from one hospital to the next. Apparently, the chemo certification is out of style. That was the cause of my delay -- no chemo nurses available. As for the mouthwash, I chalk it down to inefficiency or negligence. And they actually *expect* you to turn in all your own prescriptions that your brought?!?! Ha! My Vicodin is well stashed away -- if I get some severe pain, I don't want to wait 8 hours to get relief!
My hemoglobin is slowly descending -- right now it is at 11. That explains why I still have some energy -- I know from experience that I turn into a anemic sloth at around a hemoglobin level of 10.
[12:55pm]
Lunch is right on time, five till one. I guess it makes since. Since most cancer patients probably abhor food right now, it benefits everyone else to serve us last. Then you've got the young buck with Hodgkin's to screw everything up.
Headache, headache, headache... This is the fourth day in a row that I've had to deal with an annoying headache. If I didn't know any better, I would say that I'm stressed! But that's just not true. I should be, but I'm not. Anyhow, maybe if I score some coffee things will get better. Apparently, it dilates the blood vessels on your head or something.
[2:14pm]
On the topic of "magic mouthwash." Let it be known that I feel apprehension in describing a perfectly proven form of Western medicine in a manner fit for mystical treatment. Every time I say, "Please, could you get me some of that numbing mouthwash?" The nurse says, "Oh, the magic mouthwash. Sure thing." I've tried several times. Sometimes they get confused if I describe it in any other term.
Accordingly, I have been forced to relent. Still, a bit of my soul is chipped away each time I say the term "magic."
On another note, the big boss (oncology manager) came to visit me to ask me if I was being cared for properly. Mwa ha ha I got to relate my horror story about waiting 8 hours for relief medication, and 9 hours for chemo. It felt good.
I also wanted to say a few words about my internet friend Bekah. She just completed a bone marrow transplant, and found out a few days ago that the treatment has failed. The remaining options are not as promising. That sucks. In a way, I feel like we're peers; I kinda look up to her. I hope for the best.
Wednesday, August 27, 2008
[8-27-08] ICE again, naturally
[1:58pm]
I need FOOD! On the hospital patient guide, it specifies that lunch is to promptly arrive between 11:00am and 1:00pm. Around here, in the oncology department, that usually means that we get lunch at 1:00pm. I'm used to that, so I've been patiently waiting... To my horror, I just learned that I've been forgotten! Even worse, they are prohibiting me from walking to the cafeteria!
Fortunately, I've bribed one of the guards -- she's going to try to smuggle something in.
Onto less important stuff...
I haven't really elaborated how I feel regarding my scan results. Truthfully, I am pleased with the results. Not ecstatic; not depressed... pleased.
Apparently, this sort of casual attitude really annoys oncologists. It makes sense: they have to deliver so much bad news to so many people; any chance to deliver good news is a prized opportunity. It's a bit of a buzzkill if the patient already expects and calmly acknowledges the good news. Oh well -- I can't help that.
But basically, I got exactly what I expected. Actually, not exactly. I expected the tumor to shrink, say, 35%. Not enough to head straight for Stanford, but enough to justify a BMT and continue ICE treatment. Technically, my results were substantially better than that. Even though the tumor only decreased in size by about ten percent, its metabolism went from a 5 to a 2. So I really have a 60% reduction. Call me old fashioned, but I want the thing to shrink a bunch too.
Regardless, I can now go to Stanford (yay!), and I will get 2 more ICE sessions. Now that I think about it -- I am relieved. If the ICE did nothing, I would be in a very bad situation. But now, I can start making long-term plans again. So... good.
but... I was just now starting to recover from the last ICE treatment! I mean, it wasn't all that harsh, but there were certain disadvantages... My stomach has just returned to me a few days ago: I can eat *anything* again! And, with regard to the opposite of eating, things have returned to nominal (mostly) functionality! It's one of those things that you don't miss until you lose it. Let me tell you, I can truly appreciate it right now.
Now, I get to go back to the hospital and lose all that yet again. That sucks! Bah.
Maybe this time, the ICE will put up more of a fight. In a way, I want my opponent to be more of a challenge. Like a ten year old beating up a heavyweight boxer... I'm kind of embarrassed for him. Let him get in a few punches just to keep up appearances...this is too easy.
Anyhow, I forgot my notebook charger!! How could I do that?!?! I'm a nerd for crying out loud! That's like forgetting to put on pants in the morning! So, my battery has a few minutes left. So, ta ta for now.
I need FOOD! On the hospital patient guide, it specifies that lunch is to promptly arrive between 11:00am and 1:00pm. Around here, in the oncology department, that usually means that we get lunch at 1:00pm. I'm used to that, so I've been patiently waiting... To my horror, I just learned that I've been forgotten! Even worse, they are prohibiting me from walking to the cafeteria!
Fortunately, I've bribed one of the guards -- she's going to try to smuggle something in.
Onto less important stuff...
I haven't really elaborated how I feel regarding my scan results. Truthfully, I am pleased with the results. Not ecstatic; not depressed... pleased.
Apparently, this sort of casual attitude really annoys oncologists. It makes sense: they have to deliver so much bad news to so many people; any chance to deliver good news is a prized opportunity. It's a bit of a buzzkill if the patient already expects and calmly acknowledges the good news. Oh well -- I can't help that.
But basically, I got exactly what I expected. Actually, not exactly. I expected the tumor to shrink, say, 35%. Not enough to head straight for Stanford, but enough to justify a BMT and continue ICE treatment. Technically, my results were substantially better than that. Even though the tumor only decreased in size by about ten percent, its metabolism went from a 5 to a 2. So I really have a 60% reduction. Call me old fashioned, but I want the thing to shrink a bunch too.
Regardless, I can now go to Stanford (yay!), and I will get 2 more ICE sessions. Now that I think about it -- I am relieved. If the ICE did nothing, I would be in a very bad situation. But now, I can start making long-term plans again. So... good.
but... I was just now starting to recover from the last ICE treatment! I mean, it wasn't all that harsh, but there were certain disadvantages... My stomach has just returned to me a few days ago: I can eat *anything* again! And, with regard to the opposite of eating, things have returned to nominal (mostly) functionality! It's one of those things that you don't miss until you lose it. Let me tell you, I can truly appreciate it right now.
Now, I get to go back to the hospital and lose all that yet again. That sucks! Bah.
Maybe this time, the ICE will put up more of a fight. In a way, I want my opponent to be more of a challenge. Like a ten year old beating up a heavyweight boxer... I'm kind of embarrassed for him. Let him get in a few punches just to keep up appearances...this is too easy.
Anyhow, I forgot my notebook charger!! How could I do that?!?! I'm a nerd for crying out loud! That's like forgetting to put on pants in the morning! So, my battery has a few minutes left. So, ta ta for now.
Tuesday, August 26, 2008
[8-26-08] Scan Results!
[8:12pm]
Sorry about the late post -- we just now returned from Berkeley. It's a 1.5 hour drive, but we stopped at several places to go shopping. It was nice to treat myself further :P
Anyhow, onto the results! The doctor seemed to think that the scan results were quite good. The tumor size itself decreased by about 10%, but what really matters -- apparently -- is the metabolism, which decreased from a 5 to a 2.
This more than justifies that I am responsive to ICE, and thus makes me eligible for a BMT! Woohoo! Anyhow, the plan is to try two more ICE treatments. Also, we need to further coordinate with Stanford to make sure the apheresis goes well.
Ok, gotta celebrate my last day of freedom -- headed back to the hospital for more ICE tomorrow. I'll post much more tomorrow.
Sorry about the late post -- we just now returned from Berkeley. It's a 1.5 hour drive, but we stopped at several places to go shopping. It was nice to treat myself further :P
Anyhow, onto the results! The doctor seemed to think that the scan results were quite good. The tumor size itself decreased by about 10%, but what really matters -- apparently -- is the metabolism, which decreased from a 5 to a 2.
This more than justifies that I am responsive to ICE, and thus makes me eligible for a BMT! Woohoo! Anyhow, the plan is to try two more ICE treatments. Also, we need to further coordinate with Stanford to make sure the apheresis goes well.
Ok, gotta celebrate my last day of freedom -- headed back to the hospital for more ICE tomorrow. I'll post much more tomorrow.
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 23, 2008
[8-23-08] Worries vs. Sleep
[6:32am]
Part of the reason that I can't get back to sleep is because I keep worrying about things. Yes, yes, I'm supposed to be on vacation, but that's never been able to stop me from scrutinize the countless permutations of possible future events. I think I'm quite adept at worrying. :P
So, what am I worrying about?
A bit of background first: When I lost all my hair, I didn't actually lose all of my hair. There are these "baby" hair follicles that don't seem to be effected by the chemo. These are the follicles with really thin and light blond hair. So thin and light, that you wouldn't notice that I actually had hair until you looked really hard.
So, of course, that leads right into the cancer that I'm worried about. And, yes, I know I am hypersensitive about it... but... I've noticed that some of my facial hair started to grow back. I'm getting a stubbly chin with those thick black hairs -- far different than those baby blond follicles. So, in a way, I was OK with the baby follicles not being killed -- they aren't normal hair. But these chin hairs, they are normal hair. I'm supposed to be losing hair, not gaining it!
I'm probably looking waaaaaaay too far into it. But that's what I do. If I had a pet-CT machine in my closet, I'd do a scan every day. Since I don't, then I speculate on whatever I can find.
Then there's the tumor itself. In the brief moments where I can feel it, it seems like I can feel it more recently. Of course, this can mean one of four things:
1:It's all in your head.
2:The tumor is growing.
3:The tumor is the same size, but somehow easier to move (and thus be detected by me).
4:See #1.
Regardless, my faith in ICE has gone down since I last wrote about it. I'm not as optimistic that everything can be done in two cycles. I mean, without a doubt, there still is a tumor there. It sure doesn't seem like a 50% reduction to me. Of course, that could all just be benign tissue. So many variables...
Four cycles *sigh*, I can handle that. At least that'll give us a chance to nag Stanford to do apheresis in tandem with ICE. I just want my re-birthday to come soon.
The other thing I was worrying about was finances and whatnot. First off, withdrawing next semester means that I will lose a semester of financial aid eligibility. So, somehow, when I return to school, I'll have to find the money somewhere. Plus, I've got a huge amount of credit card debt. If I can get rid of that interest somehow, then maybe I can start saving up for that semester without financial aid.
Ugh... then, in the Stanford BMT guide, it says to expect prescription costs of up to $10,000. Neupogen is expensive, I hear.
Of course, through all of this, I have that voice that continually reminds me that there is a possibility I wont even be here in a while. In which case, I feel compelled to rack up more debt and go to Galapagos! But it's true -- it's really hard to think about 20 year repayment plans at a time like this.
These are just some of the thoughts keeping me up.
Part of the reason that I can't get back to sleep is because I keep worrying about things. Yes, yes, I'm supposed to be on vacation, but that's never been able to stop me from scrutinize the countless permutations of possible future events. I think I'm quite adept at worrying. :P
So, what am I worrying about?
A bit of background first: When I lost all my hair, I didn't actually lose all of my hair. There are these "baby" hair follicles that don't seem to be effected by the chemo. These are the follicles with really thin and light blond hair. So thin and light, that you wouldn't notice that I actually had hair until you looked really hard.
So, of course, that leads right into the cancer that I'm worried about. And, yes, I know I am hypersensitive about it... but... I've noticed that some of my facial hair started to grow back. I'm getting a stubbly chin with those thick black hairs -- far different than those baby blond follicles. So, in a way, I was OK with the baby follicles not being killed -- they aren't normal hair. But these chin hairs, they are normal hair. I'm supposed to be losing hair, not gaining it!
I'm probably looking waaaaaaay too far into it. But that's what I do. If I had a pet-CT machine in my closet, I'd do a scan every day. Since I don't, then I speculate on whatever I can find.
Then there's the tumor itself. In the brief moments where I can feel it, it seems like I can feel it more recently. Of course, this can mean one of four things:
1:It's all in your head.
2:The tumor is growing.
3:The tumor is the same size, but somehow easier to move (and thus be detected by me).
4:See #1.
Regardless, my faith in ICE has gone down since I last wrote about it. I'm not as optimistic that everything can be done in two cycles. I mean, without a doubt, there still is a tumor there. It sure doesn't seem like a 50% reduction to me. Of course, that could all just be benign tissue. So many variables...
Four cycles *sigh*, I can handle that. At least that'll give us a chance to nag Stanford to do apheresis in tandem with ICE. I just want my re-birthday to come soon.
The other thing I was worrying about was finances and whatnot. First off, withdrawing next semester means that I will lose a semester of financial aid eligibility. So, somehow, when I return to school, I'll have to find the money somewhere. Plus, I've got a huge amount of credit card debt. If I can get rid of that interest somehow, then maybe I can start saving up for that semester without financial aid.
Ugh... then, in the Stanford BMT guide, it says to expect prescription costs of up to $10,000. Neupogen is expensive, I hear.
Of course, through all of this, I have that voice that continually reminds me that there is a possibility I wont even be here in a while. In which case, I feel compelled to rack up more debt and go to Galapagos! But it's true -- it's really hard to think about 20 year repayment plans at a time like this.
These are just some of the thoughts keeping me up.
[8-23-08] Blogging Strategy.
[5:55am]
I can't seem to get back to sleep, so here I am.
First off, I was thinking about the nature of this blog. If you'll notice, the frequency of my posts has shifted from once (or more) daily to once every two days. Frankly, it's because I really haven't had all that much to talk about, especially regarding the Hodge. So, because the point of all this is to document my journey (fight, struggle, whatever...) with Hodgkin's Disease, I have to keep my entries somewhat focused. In other words, I can't post continually about what I ate that day (meat!), how much beer I drank (lots!), and what video games I played (Condemned, totally fun BTW). It's usually got to be about this whole disease, what I'm doing to fight it, how it effects me and those around me, and my thoughts regarding the whole thing in general.
The other thing to consider, however, is what happens if I have large gaps of time with nothing to say or report regarding cancer? Probably unlikely, as it is such a huge part of my life now. But nevertheless, for the sake of consistency, this blog needs to be updated regularly.
So, I have a simple strategy:
Always post at least once every two days.
That way, if I don't have much interesting/relevant to say, it is minimized. At the same time, the blog maintains consistency. I think this reveals a bit of my quirky side: to write a blog entry about writing blog entries, and detailing a strategy. Yes, I'm weird.
Nevertheless, I actually did have something to say this morning. But this entry got me side-tracked. So I'll make a new post for it.
I can't seem to get back to sleep, so here I am.
First off, I was thinking about the nature of this blog. If you'll notice, the frequency of my posts has shifted from once (or more) daily to once every two days. Frankly, it's because I really haven't had all that much to talk about, especially regarding the Hodge. So, because the point of all this is to document my journey (fight, struggle, whatever...) with Hodgkin's Disease, I have to keep my entries somewhat focused. In other words, I can't post continually about what I ate that day (meat!), how much beer I drank (lots!), and what video games I played (Condemned, totally fun BTW). It's usually got to be about this whole disease, what I'm doing to fight it, how it effects me and those around me, and my thoughts regarding the whole thing in general.
The other thing to consider, however, is what happens if I have large gaps of time with nothing to say or report regarding cancer? Probably unlikely, as it is such a huge part of my life now. But nevertheless, for the sake of consistency, this blog needs to be updated regularly.
So, I have a simple strategy:
Always post at least once every two days.
That way, if I don't have much interesting/relevant to say, it is minimized. At the same time, the blog maintains consistency. I think this reveals a bit of my quirky side: to write a blog entry about writing blog entries, and detailing a strategy. Yes, I'm weird.
Nevertheless, I actually did have something to say this morning. But this entry got me side-tracked. So I'll make a new post for it.
Thursday, August 21, 2008
[8-21-08] Vacation
[11:47am]
My appointment for the super important pet-CT scan is scheduled for Monday, the 25th. The following day, I will meet with an oncologist in Berkeley (mine remains on vacation) to discuss the next step. Will I have 2 more ICE treatments? Can I use the salvage ICE for apheresis, instead of waiting longer and using Cytoxan? When will Stanford begin their part? Hopefully, all these questions will be answered by then.
Until then, I am on vacation. School is far away from here; treatment is far away from here. Until the 25th, there's not much I can fret about... or reason to do so. It's not just the distance -- it really feels as if the whole "cancer" thing is further from my mind, here. Plus, there's the whole "don't sweat the small stuff" feeling that arises when there's a diagnosis of this magnitude. So, basically, here I am, without a worry in the world... for the next 4 days. Until then: it's vacation.
After the 25th? Who knows? Treatment could pick up pace (which I hope), or I could have yet more time to burn. Regardless, I'm not counting the month or so in Stanford in my vacation category -- that's probably not going to be a picnic.
My current plan? To have a good time, of course. Tentatively, that also includes a new video game every day. :) Yesterday was Sid Meier's Civilization Revolution -- a pretty fun game where you strategically build and develop a civilization from scratch. Today is a game called Condemned -- I haven't yet played it, but it looks like some sort of horror/sci-fi adventure. Looks fun.
[5:49pm]
I've been spending the day help Dan install a new bathtub. It's a lot of work, and I do get more tired easily, but it is nice to know that I'm still capable, ya know? Those hemoglobins aren't going to stay high forever.
My appointment for the super important pet-CT scan is scheduled for Monday, the 25th. The following day, I will meet with an oncologist in Berkeley (mine remains on vacation) to discuss the next step. Will I have 2 more ICE treatments? Can I use the salvage ICE for apheresis, instead of waiting longer and using Cytoxan? When will Stanford begin their part? Hopefully, all these questions will be answered by then.
Until then, I am on vacation. School is far away from here; treatment is far away from here. Until the 25th, there's not much I can fret about... or reason to do so. It's not just the distance -- it really feels as if the whole "cancer" thing is further from my mind, here. Plus, there's the whole "don't sweat the small stuff" feeling that arises when there's a diagnosis of this magnitude. So, basically, here I am, without a worry in the world... for the next 4 days. Until then: it's vacation.
After the 25th? Who knows? Treatment could pick up pace (which I hope), or I could have yet more time to burn. Regardless, I'm not counting the month or so in Stanford in my vacation category -- that's probably not going to be a picnic.
My current plan? To have a good time, of course. Tentatively, that also includes a new video game every day. :) Yesterday was Sid Meier's Civilization Revolution -- a pretty fun game where you strategically build and develop a civilization from scratch. Today is a game called Condemned -- I haven't yet played it, but it looks like some sort of horror/sci-fi adventure. Looks fun.
[5:49pm]
I've been spending the day help Dan install a new bathtub. It's a lot of work, and I do get more tired easily, but it is nice to know that I'm still capable, ya know? Those hemoglobins aren't going to stay high forever.
Tuesday, August 19, 2008
[8-19-08] Getting Settled.
[12:06pm]
Now's the part where I get settled into my new home! First things first: establish the command center (i.e. computer + desk). It's actually a pretty big deal, since I have waaaay too many peripherals. Also, the desk was located up in the office, so you had a pregnant woman and a chemo kid lugging this desk through the brush. But we made it!
So, I guess I'll stay here for a month or so, then head to Stanford. Then, who knows? I feel like somewhat of a nomad. Yet another good reason to live minimally. The strangest part is being out of school: what am I supposed to do with my spare time? When I was in the hospital, that was one thing. In a hospital, you're expected to slack off. Now, in my new home, I get that all too familiar feeling to start accomplishing things. Maybe I'll beef up on my coding skills a bit. Or...play xbox 360 games until my eyes fall out.
On the cancer front, things are going well. The worst passes as you get out of the hospital. All that lingers now is a real lack of stamina and the feeling that I ate (and swallowed) several pennies. An odd feeling.
[3:51pm]
Grades are in! I got an A- in Technical Writing! Woohoo!
Now's the part where I get settled into my new home! First things first: establish the command center (i.e. computer + desk). It's actually a pretty big deal, since I have waaaay too many peripherals. Also, the desk was located up in the office, so you had a pregnant woman and a chemo kid lugging this desk through the brush. But we made it!
So, I guess I'll stay here for a month or so, then head to Stanford. Then, who knows? I feel like somewhat of a nomad. Yet another good reason to live minimally. The strangest part is being out of school: what am I supposed to do with my spare time? When I was in the hospital, that was one thing. In a hospital, you're expected to slack off. Now, in my new home, I get that all too familiar feeling to start accomplishing things. Maybe I'll beef up on my coding skills a bit. Or...play xbox 360 games until my eyes fall out.
On the cancer front, things are going well. The worst passes as you get out of the hospital. All that lingers now is a real lack of stamina and the feeling that I ate (and swallowed) several pennies. An odd feeling.
[3:51pm]
Grades are in! I got an A- in Technical Writing! Woohoo!
Monday, August 18, 2008
[8-18-08] Moving!
[12:49pm]
I got discharged from the hospital at around 9:00am! One of the nurses I'm more familiar with, Janette, walked me out and got me a taxi...the hospital even paid for it! Quite nice. It was really sweet: She told me to "not come back, get a good pet scan, and go straight to Stanford." Then she gave me a hug.
So then, I got some 7-11 nachos (which I've been craving tremendously), stopped by Liz's place, and began moving out!
Despite a strange taste in my mouth and a lot less energy, this was, perhaps, even easier than the first ICE session. Rock on! Of course, my nadir is in about 10 days, so we'll see how I'm feeling then. But for now, I feel great!
Moving Out:
It's sort of a tradition for me. I like to live simply, and move efficiently. So, here's my refined step-by-step guide to moving out, Austin-style:
1:Throw away all trash.
2:Put all your dirty laundry large garbage bags. Put all your clean laundry in different large garbage bags. Make sure you know which is which.
3:Take all your books you have finished reading (and don't use for reference) and sell them. Take all your CDs you've copied to mp3, or don't listen to anymore, and sell them. Sell all your xbox360 games you've already played.
4:Arrange your: "I'll need this immediately where I will live" section. Label this #1.
5:Arrange your: "I'll need this nearby" section. Label this #2.
6:Arrange your: "I'll need this at some point, but I'm willing to drive to storage for it" section. Label this #3.
7:Throw away everything that doesn't fit in any of those three sections -- basically anything you don't need.
8:Sort items into the three sections. If delicate, put in banker's box. Else, just put in a labeled trash bag.
9:Computer always goes last.
And that's it! You've moved out in 3 hours, and move-in will be even easier. Just put #1 in your room, #2 in the garage, and #3 in storage. Plus, you've gotten rid of a lot of useless stuff and simplified your life.
So now I'm just going to waste time on the internet until Dan get's here. And, yeah, I'm not driving my motorcycle to Aptos. We'll pick it up later.
I got discharged from the hospital at around 9:00am! One of the nurses I'm more familiar with, Janette, walked me out and got me a taxi...the hospital even paid for it! Quite nice. It was really sweet: She told me to "not come back, get a good pet scan, and go straight to Stanford." Then she gave me a hug.
So then, I got some 7-11 nachos (which I've been craving tremendously), stopped by Liz's place, and began moving out!
Despite a strange taste in my mouth and a lot less energy, this was, perhaps, even easier than the first ICE session. Rock on! Of course, my nadir is in about 10 days, so we'll see how I'm feeling then. But for now, I feel great!
Moving Out:
It's sort of a tradition for me. I like to live simply, and move efficiently. So, here's my refined step-by-step guide to moving out, Austin-style:
1:Throw away all trash.
2:Put all your dirty laundry large garbage bags. Put all your clean laundry in different large garbage bags. Make sure you know which is which.
3:Take all your books you have finished reading (and don't use for reference) and sell them. Take all your CDs you've copied to mp3, or don't listen to anymore, and sell them. Sell all your xbox360 games you've already played.
4:Arrange your: "I'll need this immediately where I will live" section. Label this #1.
5:Arrange your: "I'll need this nearby" section. Label this #2.
6:Arrange your: "I'll need this at some point, but I'm willing to drive to storage for it" section. Label this #3.
7:Throw away everything that doesn't fit in any of those three sections -- basically anything you don't need.
8:Sort items into the three sections. If delicate, put in banker's box. Else, just put in a labeled trash bag.
9:Computer always goes last.
And that's it! You've moved out in 3 hours, and move-in will be even easier. Just put #1 in your room, #2 in the garage, and #3 in storage. Plus, you've gotten rid of a lot of useless stuff and simplified your life.
So now I'm just going to waste time on the internet until Dan get's here. And, yeah, I'm not driving my motorcycle to Aptos. We'll pick it up later.
Sunday, August 17, 2008
[8-17-08] ICE, Day Four
[11:36am]
I felt like sleeping most of today, so I did. And it was good; I just woke up. *yawn* They're starting the chemo in a few minutes, so that means I should be out of here by, say, 12pm on Monday! Woohoo!
My head looks very "spotted" this morning. I haven't been removing head hair, but it seems to naturally fall out in spots. Fascinating.
[12:10pm]
Sitting around the hospital all day, you become familiar with the nurses and get to know them. You also get to easily recognize how skilled and thorough they are. Some nurses forget to have the ifosfamide and the saline pump simultaneously and two separate pumps. Some, tape the tubing on your chest oddly so that it occludes. Some, forget to check the bandage holding your port, and allow it to nearly fall off before I have to say something. Lots of mistakes all over the place; nothing super critical, however, but after a while you notice these things.
One nurse, however, is just simply exceptional. And get this: he is a Nurse Assistant, not a Registered Nurse, like most of those handling chemo around here. He hasn't made a single mistake, he is extremely thorough, is extremely polite, and does things like make my bed (which no one else here does) or pick up a few bits of trash about the room. He's also the nurse yesterday that fronted my take-out bill. His name is Jibril, and he's been a nurse in the US for only 5 years (previously in Samoa). Get this: he chooses to be a nurse assistant, because he's afraid his language barrier may cause trouble at a critical moment or something. His rank in Samoa was higher. Anyhow, I just wanted to say a few good words about him because he's awesome.
[3:20pm]
Great news! I just saw my doctor, and I asked her if we could expedite the discharge process. She said that she'll get all the paperwork done tonight, and that I could leave when I choose tomorrow morning. That'll make moving out of my dorm much easier. I could get everything prepared before transport arrives.
On the hair front, it's 98% gone. I just got annoyed at it falling out all over the place, so I spent about 10 minutes just running my hands through it. It fell like snow. There are still some odd spots that wont come out, but, all in all, it looks better than it did. And feels better.
Watching: Austin Powers marathon!
I felt like sleeping most of today, so I did. And it was good; I just woke up. *yawn* They're starting the chemo in a few minutes, so that means I should be out of here by, say, 12pm on Monday! Woohoo!
My head looks very "spotted" this morning. I haven't been removing head hair, but it seems to naturally fall out in spots. Fascinating.
[12:10pm]
Sitting around the hospital all day, you become familiar with the nurses and get to know them. You also get to easily recognize how skilled and thorough they are. Some nurses forget to have the ifosfamide and the saline pump simultaneously and two separate pumps. Some, tape the tubing on your chest oddly so that it occludes. Some, forget to check the bandage holding your port, and allow it to nearly fall off before I have to say something. Lots of mistakes all over the place; nothing super critical, however, but after a while you notice these things.
One nurse, however, is just simply exceptional. And get this: he is a Nurse Assistant, not a Registered Nurse, like most of those handling chemo around here. He hasn't made a single mistake, he is extremely thorough, is extremely polite, and does things like make my bed (which no one else here does) or pick up a few bits of trash about the room. He's also the nurse yesterday that fronted my take-out bill. His name is Jibril, and he's been a nurse in the US for only 5 years (previously in Samoa). Get this: he chooses to be a nurse assistant, because he's afraid his language barrier may cause trouble at a critical moment or something. His rank in Samoa was higher. Anyhow, I just wanted to say a few good words about him because he's awesome.
[3:20pm]
Great news! I just saw my doctor, and I asked her if we could expedite the discharge process. She said that she'll get all the paperwork done tonight, and that I could leave when I choose tomorrow morning. That'll make moving out of my dorm much easier. I could get everything prepared before transport arrives.
On the hair front, it's 98% gone. I just got annoyed at it falling out all over the place, so I spent about 10 minutes just running my hands through it. It fell like snow. There are still some odd spots that wont come out, but, all in all, it looks better than it did. And feels better.
Watching: Austin Powers marathon!
Saturday, August 16, 2008
[8-16-08] ICE, Day Three
[9:21am]
Got a good night's sleep. So nice. It's hard to get to sleep in a strange place, on a strange bed, with random people waking you up at random times of the night. Sleeping pills are necessary to get a full night's sleep, at least for me.
Anyhow, I did the normal routine. Since I have to water-protect my port, I wash my hair in the sink. And, I just could not believe the amount that came out! It looks like I'm going to lose my 10 day bet -- it's going to be like 3 or 4 more days, I believe. I already have bald streaks on the side of my head. Interesting to note where the hair is first lost.
Also, they've been giving me some "magic mouthwash" for some of the sores I have under the tongue. It's not all that bad, just really annoying. Makes saying a few words and eating Cheetos a little painful. So, even though my case is about as mild as it gets, I always take the path of least pain. Apparently, it's due to a low white blood count (though mine is not *that* low).
The downside to the mouthwash, is that it makes me feel a bit queasy for an hour or so afterwards.
[10:45am]
It seems I've been talking so much about events, that I haven't said much on how I am feeling about all this. The cancer, the hospitalization, the hair loss, the chemo, withdrawal from school, scary BMT, moving in with family, and general emotional state. So, I thought I'd say a few words about it. In general, I'm doing absolutely fine with all this. Mood is good. Don't worry, I'll be sure to complain or be pessimistic when the time comes. But, right now, it's all good.
Specifically,
The Cancer: I'm confident that ICE will show enough progress after 2 or 4 cycles to send me to the BMT program. My belief that 2 cycles will get it done is going up with time. I believe the BMT will send me to a remission, with a decent chance of a permanent cure (although I recognize the chance of a relapse or secondary cancer). Also, I am fairly certain that I will have some long-term side-effects maybe 10 years or so down the road. But I am also sure that they can be handled with proper healthy behavior, and medical upkeep.
The BMT: Looking forward to it; it should be interesting. I know it will be totally tough, and I'll be pretty decrepit at times... but, I expect the BMT to the coup de grâce for the evil tumor, and that's exciting. Liz told me not to use the word "burden," so instead I will say: "I want to minimize how much of a workload I am to my family through all of this. I totally recognize that this is tough on everyone, and don't want anyone to feel any obligation whatsoever."
Hair Loss: It sucks, but I'm cool with it. Kinda neat, in a way. But, then again, it's like wearing a hospital gown: an indication to the world that you are sick. I don't like that.
Hospital: Things are great here. I do feel a bit trapped, but with the internet, and movies, and my book, I'm pretty well entertained. Food quality and quantity needs a little boost though. I'm starting to get into this novel, so I look forward to getting totally lost in a fantasy series (thanks, Liz!).
Chemo: Starting to feel the effects of the chemo again; getting flashbacks to the harder parts of the Stanford V. But, still, I'm handling it extremely well. So, I'm not bothered much by it...yet.
Withdrawal from School: I'm more bothered by this, than by anything else. School represents moving forward in life. Not only that, but redemption. Having to withdraw previously, and basically wasting away my potential for three years has really taught me the negative aspects of myself. Doing well, being productive, and generally being positive to those around you are what it's all about. That's why graduation from Berkeley is so profoundly important to me. I know that a bit hard on myself, but that's the plain truth of how I feel.
Staying in school (finishing fall and summer sessions) while undergoing chemo and cancer treatment has been a personal victory for me. I'm proud of that. Having to withdraw due to cancer evens the score. It is a battle. :P
Moving in with family: Same "workload" considerations as before. I'm really looking forward to their company. Just yet another example of how awesome my family is. I mean, I think most people envision long time spent with their family with some amount of dread. But we're a tightly knit group. We're friends; we hang out for no occasion whatsoever. Awesome and special. The downside is that I'll see Liz less frequently.
So, that's the status report. All in all, things are quite good.
[11:40am]
Heh heh. I just ordered more Japanese food. I love spoiling myself... might as well. :)
[12:51pm]
Food Delivery Fiasco: About ten minutes after I ordered the Japanese food, I was sent to have my pulmonary function test. I thought it would be a short affair, but it actually took about 25 minutes. But priorities, you know? A PFT is *way* more important than Japanese food. Anyhow, so about 20 minutes into the PFT, my nurse runs up to the room I am in and says: "Did you order take-out? There's a guy with takeout waiting next to your room." I asked the nurse if he could take some money out of my wallet, left in the room. They nice guy just asked me if I had enough money, then said I could pay him back. Super cool of him. I imagine the delivery guy was quite upset, though. He was tipped well, but I don't believe they'll be delivering to my room again. [Edit: Actually, the nurse thought my tip was too big. Gave him a 3 dollar tip on a 22 dollar meal -- ouch!] :P
On a good note, it looks like I've passed the PFT with flying colors. So, nothing's stopping me from Stanford BMT!
Oh, and when I was sorting through my delivery, a food-service person came in because I forgot to turn in my menu. I was standing next to the window when she asked, "Do you know where the patient is?" I thought that was awesome.
[2:06pm]
Chemo is starting a little late today. Time for a little pre-chemo Ativan nap.
[12:35pm]
Just shaved the last of my facial hair with my fingers. Looks like I was short on the bet by about 8 days -- I've definitely hit the 50% marker. Good night, hair.
Got a good night's sleep. So nice. It's hard to get to sleep in a strange place, on a strange bed, with random people waking you up at random times of the night. Sleeping pills are necessary to get a full night's sleep, at least for me.
Anyhow, I did the normal routine. Since I have to water-protect my port, I wash my hair in the sink. And, I just could not believe the amount that came out! It looks like I'm going to lose my 10 day bet -- it's going to be like 3 or 4 more days, I believe. I already have bald streaks on the side of my head. Interesting to note where the hair is first lost.
Also, they've been giving me some "magic mouthwash" for some of the sores I have under the tongue. It's not all that bad, just really annoying. Makes saying a few words and eating Cheetos a little painful. So, even though my case is about as mild as it gets, I always take the path of least pain. Apparently, it's due to a low white blood count (though mine is not *that* low).
The downside to the mouthwash, is that it makes me feel a bit queasy for an hour or so afterwards.
[10:45am]
It seems I've been talking so much about events, that I haven't said much on how I am feeling about all this. The cancer, the hospitalization, the hair loss, the chemo, withdrawal from school, scary BMT, moving in with family, and general emotional state. So, I thought I'd say a few words about it. In general, I'm doing absolutely fine with all this. Mood is good. Don't worry, I'll be sure to complain or be pessimistic when the time comes. But, right now, it's all good.
Specifically,
The Cancer: I'm confident that ICE will show enough progress after 2 or 4 cycles to send me to the BMT program. My belief that 2 cycles will get it done is going up with time. I believe the BMT will send me to a remission, with a decent chance of a permanent cure (although I recognize the chance of a relapse or secondary cancer). Also, I am fairly certain that I will have some long-term side-effects maybe 10 years or so down the road. But I am also sure that they can be handled with proper healthy behavior, and medical upkeep.
The BMT: Looking forward to it; it should be interesting. I know it will be totally tough, and I'll be pretty decrepit at times... but, I expect the BMT to the coup de grâce for the evil tumor, and that's exciting. Liz told me not to use the word "burden," so instead I will say: "I want to minimize how much of a workload I am to my family through all of this. I totally recognize that this is tough on everyone, and don't want anyone to feel any obligation whatsoever."
Hair Loss: It sucks, but I'm cool with it. Kinda neat, in a way. But, then again, it's like wearing a hospital gown: an indication to the world that you are sick. I don't like that.
Hospital: Things are great here. I do feel a bit trapped, but with the internet, and movies, and my book, I'm pretty well entertained. Food quality and quantity needs a little boost though. I'm starting to get into this novel, so I look forward to getting totally lost in a fantasy series (thanks, Liz!).
Chemo: Starting to feel the effects of the chemo again; getting flashbacks to the harder parts of the Stanford V. But, still, I'm handling it extremely well. So, I'm not bothered much by it...yet.
Withdrawal from School: I'm more bothered by this, than by anything else. School represents moving forward in life. Not only that, but redemption. Having to withdraw previously, and basically wasting away my potential for three years has really taught me the negative aspects of myself. Doing well, being productive, and generally being positive to those around you are what it's all about. That's why graduation from Berkeley is so profoundly important to me. I know that a bit hard on myself, but that's the plain truth of how I feel.
Staying in school (finishing fall and summer sessions) while undergoing chemo and cancer treatment has been a personal victory for me. I'm proud of that. Having to withdraw due to cancer evens the score. It is a battle. :P
Moving in with family: Same "workload" considerations as before. I'm really looking forward to their company. Just yet another example of how awesome my family is. I mean, I think most people envision long time spent with their family with some amount of dread. But we're a tightly knit group. We're friends; we hang out for no occasion whatsoever. Awesome and special. The downside is that I'll see Liz less frequently.
So, that's the status report. All in all, things are quite good.
[11:40am]
Heh heh. I just ordered more Japanese food. I love spoiling myself... might as well. :)
[12:51pm]
Food Delivery Fiasco: About ten minutes after I ordered the Japanese food, I was sent to have my pulmonary function test. I thought it would be a short affair, but it actually took about 25 minutes. But priorities, you know? A PFT is *way* more important than Japanese food. Anyhow, so about 20 minutes into the PFT, my nurse runs up to the room I am in and says: "Did you order take-out? There's a guy with takeout waiting next to your room." I asked the nurse if he could take some money out of my wallet, left in the room. They nice guy just asked me if I had enough money, then said I could pay him back. Super cool of him. I imagine the delivery guy was quite upset, though. He was tipped well, but I don't believe they'll be delivering to my room again. [Edit: Actually, the nurse thought my tip was too big. Gave him a 3 dollar tip on a 22 dollar meal -- ouch!] :P
On a good note, it looks like I've passed the PFT with flying colors. So, nothing's stopping me from Stanford BMT!
Oh, and when I was sorting through my delivery, a food-service person came in because I forgot to turn in my menu. I was standing next to the window when she asked, "Do you know where the patient is?" I thought that was awesome.
[2:06pm]
Chemo is starting a little late today. Time for a little pre-chemo Ativan nap.
[12:35pm]
Just shaved the last of my facial hair with my fingers. Looks like I was short on the bet by about 8 days -- I've definitely hit the 50% marker. Good night, hair.
Friday, August 15, 2008
[8-15-08] ICE, Day Two
[7:17am]
So, I asked for a sleeping pill last night because I just had that "feeling" that sleep was not going to come easily. They obliged and gave me an Ambien. Alas, the pill was not continuous release, so I got 4 hours sleep on the dot. Still wish I could get more sleep...
Barbara crashed over here last night. They got her a lazyboy-type long chair and everything, so she looked comfortable. Of course, without the chair, she would've found a way to sleep in some sort of crazy configuration anyways -- she has a talent for that. Anyways, since I was up early (sorry Barbara!), I finished my morning shower/routine quite early today. While I was washing, I noticed that there was no armpit hair! None, whatsoever! Did that happen overnight? How can that happen so suddenly? I think I retained some of that hair through the Stanford V.
Proudly, I show Barbara -- "Look, no armpit hair!" I say. Perhaps it wasn't on the same level as passing a tough course or getting an "A" on a term paper, but, nevertheless, I thought it was pretty darn cool! See, I never liked that hair -- it's totally useless. If it weren't for all the work required, I'd probably get rid of it. ICE is kicking ass, methinks.
Again, it the whole: "Austin, there's no empirical evidence to support your conclusion." thing. Nevertheless, I'm starting to feel more optimistic about this particular treatment. Perhaps two cycles wont kill the tumor completely, but I'm starting to believe that a 50%-75% reduction is likely. Still, if it goes so well, why not go for four cycles and kill it completely?
As I heard it explained, they don't want to give any unecessary chemo. Not for side-effects and whatnot, but because it seems your body becomes more chemo-resistant as you are exposed to more of it. Since the "conditioning chemo" part of the BMT is the most important, it is better to have your body less resistant to the BIGGER chemo than it is to have a smaller tumor and greater resistance. It does seem like an iffy trade-off, and my doctor better have a good reason to support her choice. Still, it makes some sense. But I always liked the idea of going into a BMT while technically in remission. :P
[2:34pm]
Good news! My Pet-CT scan has been scheduled for the 25th, my Pet-CT follow-up (to decide how to progress) is scheduled for the 26th, and I should get that pulmonary function test (that they forgot to do last time I was hospitalized) some time this weekend. More good news: Chemo started on schedule today, and my counts are slightly up from yesterday (for some reason), so I should be feeling great! However, I'm actually feeling a little worn. And, for the first time, I went a little "Pavlov's Dog" when seeing the chemo enter the room. Light, light, anticipatory nausea. All the anti-emetics soon worked their magic.
I'm gonna go try and shave my little 10-day mustache with my fingers now. Just because. :P
[2:47pm]
Wow, it worked! My mustache is totally gone! Creepy. Poor Gillette's gonna lose some money -- this is baby smooth! Heh, I wonder if it'll confuse any of the nurses. :P
[5:35pm]
*Ugly Side Effect Warning* Embarrassing to admit, but I must report all side effects. Got about a teaspoon blood in the stool, so that's a bit of concern, especially if my platelet counts go too far south. Also, it's apparently important to distinguish that this was accomplished without strain (i.e. constipation). Nurse plans to add a stool softener, and will see if that helps. But they don't look too concerned (I'm certainly a bit spooked!), so that's a relief.
On a more pleasant note, they just started the ifosfamide, and I swear I can taste it! Yum, yum.
[6:50pm]
Guh. Looks like it usually takes a few days with ICE for the nausea to kick in. Last time it was the third day. This time: the second day. For some reason, the meds to combat it haven't been pre-approved for "as needed", so I have to wait until a doctor can be contacted. S'ok though, it's not too bad. But with stuff like this, it's always best to attack early.
So, I asked for a sleeping pill last night because I just had that "feeling" that sleep was not going to come easily. They obliged and gave me an Ambien. Alas, the pill was not continuous release, so I got 4 hours sleep on the dot. Still wish I could get more sleep...
Barbara crashed over here last night. They got her a lazyboy-type long chair and everything, so she looked comfortable. Of course, without the chair, she would've found a way to sleep in some sort of crazy configuration anyways -- she has a talent for that. Anyways, since I was up early (sorry Barbara!), I finished my morning shower/routine quite early today. While I was washing, I noticed that there was no armpit hair! None, whatsoever! Did that happen overnight? How can that happen so suddenly? I think I retained some of that hair through the Stanford V.
Proudly, I show Barbara -- "Look, no armpit hair!" I say. Perhaps it wasn't on the same level as passing a tough course or getting an "A" on a term paper, but, nevertheless, I thought it was pretty darn cool! See, I never liked that hair -- it's totally useless. If it weren't for all the work required, I'd probably get rid of it. ICE is kicking ass, methinks.
Again, it the whole: "Austin, there's no empirical evidence to support your conclusion." thing. Nevertheless, I'm starting to feel more optimistic about this particular treatment. Perhaps two cycles wont kill the tumor completely, but I'm starting to believe that a 50%-75% reduction is likely. Still, if it goes so well, why not go for four cycles and kill it completely?
As I heard it explained, they don't want to give any unecessary chemo. Not for side-effects and whatnot, but because it seems your body becomes more chemo-resistant as you are exposed to more of it. Since the "conditioning chemo" part of the BMT is the most important, it is better to have your body less resistant to the BIGGER chemo than it is to have a smaller tumor and greater resistance. It does seem like an iffy trade-off, and my doctor better have a good reason to support her choice. Still, it makes some sense. But I always liked the idea of going into a BMT while technically in remission. :P
[2:34pm]
Good news! My Pet-CT scan has been scheduled for the 25th, my Pet-CT follow-up (to decide how to progress) is scheduled for the 26th, and I should get that pulmonary function test (that they forgot to do last time I was hospitalized) some time this weekend. More good news: Chemo started on schedule today, and my counts are slightly up from yesterday (for some reason), so I should be feeling great! However, I'm actually feeling a little worn. And, for the first time, I went a little "Pavlov's Dog" when seeing the chemo enter the room. Light, light, anticipatory nausea. All the anti-emetics soon worked their magic.
I'm gonna go try and shave my little 10-day mustache with my fingers now. Just because. :P
[2:47pm]
Wow, it worked! My mustache is totally gone! Creepy. Poor Gillette's gonna lose some money -- this is baby smooth! Heh, I wonder if it'll confuse any of the nurses. :P
[5:35pm]
*Ugly Side Effect Warning* Embarrassing to admit, but I must report all side effects. Got about a teaspoon blood in the stool, so that's a bit of concern, especially if my platelet counts go too far south. Also, it's apparently important to distinguish that this was accomplished without strain (i.e. constipation). Nurse plans to add a stool softener, and will see if that helps. But they don't look too concerned (I'm certainly a bit spooked!), so that's a relief.
On a more pleasant note, they just started the ifosfamide, and I swear I can taste it! Yum, yum.
[6:50pm]
Guh. Looks like it usually takes a few days with ICE for the nausea to kick in. Last time it was the third day. This time: the second day. For some reason, the meds to combat it haven't been pre-approved for "as needed", so I have to wait until a doctor can be contacted. S'ok though, it's not too bad. But with stuff like this, it's always best to attack early.
[8-15-08] The "Don't Give Me Less Chemo Study."
Here's the study: The Importance of Planned Dose of Chemotherapy on Time: Do We Need to Change Our Clinical Practice?
The conclusion of the study:
I encourage anyone to read the study first and form their own opinions, before listening to my views.
My belief, is that the study may be controversial. No one wants to be told that their oncologist may have made a sub-optimal decision regarding their treatment. Basically, a dose reduction or a delayed dose results in a reduction in the relative dose intensity (RDI: percentage dose relative to the standard dose) of the regimen. The study looks, retroactively, at the survival results when a group of patients are 50% RDI or 70% RDI. The findings: There is a significant reduction in patient survival.
My belief, is that the study makes sense. Accordingly, I will always resist, to the best of my ability, and dose reduction or delayed treatment. Bring on the neupogen!
Note: I'm not saying that I resist having only 2 ICE treatments. I am saying, that if those two treatments were a month apart or at reduced doses, then I would have a problem.
The conclusion of the study:
"When chemotherapy is being given with curative intent, we believe that it is important to avoid reductions and delays in chemotherapy if the best possible outcome is to be achieved, although this is not possible for all patients."
I encourage anyone to read the study first and form their own opinions, before listening to my views.
My belief, is that the study may be controversial. No one wants to be told that their oncologist may have made a sub-optimal decision regarding their treatment. Basically, a dose reduction or a delayed dose results in a reduction in the relative dose intensity (RDI: percentage dose relative to the standard dose) of the regimen. The study looks, retroactively, at the survival results when a group of patients are 50% RDI or 70% RDI. The findings: There is a significant reduction in patient survival.
My belief, is that the study makes sense. Accordingly, I will always resist, to the best of my ability, and dose reduction or delayed treatment. Bring on the neupogen!
Note: I'm not saying that I resist having only 2 ICE treatments. I am saying, that if those two treatments were a month apart or at reduced doses, then I would have a problem.
Thursday, August 14, 2008
[8-14-08] ICE, Day One
[2:54am]
This bed is inferior to the one I had previously. With all beds, there is a finite amount of time that it can function before some type of back pain is present. The last one was a miraculous 11.5 hours or so! As it so happens, I have just finished my objective evaluation of this current bed. My conclusion? A standard 7-hours.
Fortunately, I have just been fed some Vicodin in an effort to add more "fluff" to my mattress. We shall see. Cardboard plus Vicodin does not a Tempurpedic make. Interesting to note that they decided to allow me "as-needed" access to the good stuff. I guess when I told them about that unfortunate ER visit a few days ago, they thought it might be important to consider possible pain. Glad they did. Previously, I might have eaten a few Tylenol and waited like a good boy. Now, with all other crappiness in-bound, I don't have the luxury or time to be a "good boy." Fix it, I say! :P
Scalp feels a bit strange. So, I just gave myself the good-old hair-pull test. It's started. Onset is more sudden (just noticed it now!) and the amount of hair lost per pinch is FAR greater than last time. This should be interesting! Bets are being taken! Can you guess the hair halflife (Time it takes to lose 50% of current hair)? My current bet is 1.5 weeks.
[8:54am]
Ah, nothing like a fresh shower to start your day properly! It was quite difficult, actually. For example, to wash one's hair while simultaneously holding plastic tubing and maneuvering so that one's port does not get wet...is quite difficult. I got water everywhere. Still, mission complete.
I am so ready for chemo.
By the way, I was thinking about making the title of my previous post a trivia challenge! Basically, some video game quote was swimming in my heard yesterday, and I was wondering if any of the Kentucky gamers I know could guess it. The title refers to a video game quote, specifically for the Nintendo. So what game was it?
[10:15am]
Just started me on the pre-meds: Ativan, Zolfran, and Decadron. Chemo ETA: 20 mins.
Ah man, I'm losing the scruffy little beard hear that I've spent the last two weeks cultivating! Liz was telling me how she liked it, so I've been working on it. I had the impression that the slower growing the hair was, the more resistant it would be to falling out. Accordingly, I visualized myself bald, but with facial hair for a time. Nope, not gonna happen. Bummer. That might've been a "tough" look. All of my hair, with the exception of eyebrows and eyelashes, is being lost at a ridiculous pace. It's cool! I mean, yeah, it sucks and everything. But it's inevitable, and quite an odd experience! In other words: kinda neat. I do find, however, that I have to resist the urge to become a Trichotillomaniac. It can be addictive.
I know there isn't empirical evidence to back this up. But, nevertheless, I find this reassuring. I mean, chemo kills rapidly growing cells, yes? Stanford V did not kill the tumor, and it only killed some of the rapidly-growing hair cells. ICE, on the other hand, is just brutally killing every hair cell in existence. What can I conclude it will do to the tumor, then? Hmmm? :P
[12:23pm]
Not taking a chance with lunch today! I just placed an order for delivery from the local Japanese restaurant -- I feel so decadent!! Mmmmm...
On another note, chemo is pumping as-scheduled. Finally!
[2:20pm]
Just woke up from my food-induced coma. That Japanese food: BEST IDEA EVAH! I'm so happy. They came in with HUGE servings -- I actually couldn't eat in all. Oh well, teryaki for later! While I was eating the nurse came in with the hospital lunch... I felt a bit guilty: "oh, I'll eat your food too!" I ate the pears.
On the chemo-front: I'm getting a bit of what feels like a headache. Meh.
[8:53pm]
So, my first day's been pretty uneventful. No news is usually good news. All chemo was delivered: cisplatin, hydration, mesna, ifosfamide, etoposide, mesna, with no side effects. Except for a weird taste and the mouth and an odd (but perfectly acceptable) "feeling" in the stomach; kinda like "this is not nominal, but ok nonetheless." All in all, well tolerated...
Except, it looks like that headache I described earlier transformed into a fever. Just a few moments ago, I realized that I had that all-too-familiar "burning eyes" sensation that has always been my personal fever indicator. It sounds worse than it is: just a kinda warm, uncomfortable, headachey feeling in the eyes. Anyhow, I'm benchmarked at 100.0F on the dot. But, I'm sure it will go away -- I just had the etoposide, and I have experienced temporary fevers due to the drug before.
This bed is inferior to the one I had previously. With all beds, there is a finite amount of time that it can function before some type of back pain is present. The last one was a miraculous 11.5 hours or so! As it so happens, I have just finished my objective evaluation of this current bed. My conclusion? A standard 7-hours.
Fortunately, I have just been fed some Vicodin in an effort to add more "fluff" to my mattress. We shall see. Cardboard plus Vicodin does not a Tempurpedic make. Interesting to note that they decided to allow me "as-needed" access to the good stuff. I guess when I told them about that unfortunate ER visit a few days ago, they thought it might be important to consider possible pain. Glad they did. Previously, I might have eaten a few Tylenol and waited like a good boy. Now, with all other crappiness in-bound, I don't have the luxury or time to be a "good boy." Fix it, I say! :P
Scalp feels a bit strange. So, I just gave myself the good-old hair-pull test. It's started. Onset is more sudden (just noticed it now!) and the amount of hair lost per pinch is FAR greater than last time. This should be interesting! Bets are being taken! Can you guess the hair halflife (Time it takes to lose 50% of current hair)? My current bet is 1.5 weeks.
[8:54am]
Ah, nothing like a fresh shower to start your day properly! It was quite difficult, actually. For example, to wash one's hair while simultaneously holding plastic tubing and maneuvering so that one's port does not get wet...is quite difficult. I got water everywhere. Still, mission complete.
I am so ready for chemo.
By the way, I was thinking about making the title of my previous post a trivia challenge! Basically, some video game quote was swimming in my heard yesterday, and I was wondering if any of the Kentucky gamers I know could guess it. The title refers to a video game quote, specifically for the Nintendo. So what game was it?
[10:15am]
Just started me on the pre-meds: Ativan, Zolfran, and Decadron. Chemo ETA: 20 mins.
Ah man, I'm losing the scruffy little beard hear that I've spent the last two weeks cultivating! Liz was telling me how she liked it, so I've been working on it. I had the impression that the slower growing the hair was, the more resistant it would be to falling out. Accordingly, I visualized myself bald, but with facial hair for a time. Nope, not gonna happen. Bummer. That might've been a "tough" look. All of my hair, with the exception of eyebrows and eyelashes, is being lost at a ridiculous pace. It's cool! I mean, yeah, it sucks and everything. But it's inevitable, and quite an odd experience! In other words: kinda neat. I do find, however, that I have to resist the urge to become a Trichotillomaniac. It can be addictive.
I know there isn't empirical evidence to back this up. But, nevertheless, I find this reassuring. I mean, chemo kills rapidly growing cells, yes? Stanford V did not kill the tumor, and it only killed some of the rapidly-growing hair cells. ICE, on the other hand, is just brutally killing every hair cell in existence. What can I conclude it will do to the tumor, then? Hmmm? :P
[12:23pm]
Not taking a chance with lunch today! I just placed an order for delivery from the local Japanese restaurant -- I feel so decadent!! Mmmmm...
On another note, chemo is pumping as-scheduled. Finally!
[2:20pm]
Just woke up from my food-induced coma. That Japanese food: BEST IDEA EVAH! I'm so happy. They came in with HUGE servings -- I actually couldn't eat in all. Oh well, teryaki for later! While I was eating the nurse came in with the hospital lunch... I felt a bit guilty: "oh, I'll eat your food too!" I ate the pears.
On the chemo-front: I'm getting a bit of what feels like a headache. Meh.
[8:53pm]
So, my first day's been pretty uneventful. No news is usually good news. All chemo was delivered: cisplatin, hydration, mesna, ifosfamide, etoposide, mesna, with no side effects. Except for a weird taste and the mouth and an odd (but perfectly acceptable) "feeling" in the stomach; kinda like "this is not nominal, but ok nonetheless." All in all, well tolerated...
Except, it looks like that headache I described earlier transformed into a fever. Just a few moments ago, I realized that I had that all-too-familiar "burning eyes" sensation that has always been my personal fever indicator. It sounds worse than it is: just a kinda warm, uncomfortable, headachey feeling in the eyes. Anyhow, I'm benchmarked at 100.0F on the dot. But, I'm sure it will go away -- I just had the etoposide, and I have experienced temporary fevers due to the drug before.
Wednesday, August 13, 2008
[8-13-08] No ICE? What a drag.
[10:36am]
I just got settled in! I set up my laptop, plugged in Barbara's hard drive, put away my clothes, and politely refused to wear a gown. I mean, it doesn't make any sense! I want to feel human, not like some sick person! Granted, I am sick... but that doesn't mean I have to feel sick!
It's also funny that they all seem to think that, without a gown, I will choose to instead sleep in my jeans. "We have some pajama pants you can wear..." Maybe they're extremely prudish?
But it's like, "H-e-l-l-o!! I have Hodgkin's Lymphoma...anyone know what that means...anyone...anyone...Bueller?" Night sweats! And if you think I'm a going nite-nite in anything other than my undies, you got another thing coming!
So, no gown. :) I am, of course, wearing clothes :P
[12:28pm]
Red Warrior needs food badly!
Hmmm... I'm such a pig. Nurse is trying to explain all the upcoming chemo and side effects, and I'm like: "Yes, yes, but when is the food coming?" and she's like: "Well, usually lun..." and I'm like: "YES, FOOD! FOOD FOOD FOOD!"
*ahem* Yes. The point is that I'm not used to having to wait for food. I suppose I am spoiled in that regard. At home, when I am hungry, I eat. Simple as that. Accordingly, it has turned into somewhat of a personal obsession over the past thirty minutes. I think to myself: "I wonder what's going to be on the menu...French fries? No...they wouldn't dare...At least some type of desert object though...Thats good...But will they remember that I usually eat double portions? Or will they screw me on the first day?" Arrrgh! So much stress!
[1:24pm]
Hmmm....I found a Japanese Restaurant that will deliver here. I hope the staff here wouldn't consider that rude...
[1:47pm]
Ah, I've been fed. All is right in the world. Chemo hasn't started yet, but my lab results are in!
WBC: 5.1 [Nom: 4.8 to 10.8]
RBC: 3.8 [Nom: 4.7 to 6.1]
HGB: 11.7 [Nom: 14 to 18]
Slightly anemic, but not immunosuppressed. Chemo is a go!
[3:43pm]
Chemo is not a go! There hasn't been any chemo orders faxed from Irwin's office. The pharmacy closes at 4:30pm. No orders before 4:30pm means no chemo today. In other words, the whole day will be pointless. Bah, more stress. It's not fighting cancer, it's fighting to get treated!
[4:00pm]
Dr. C isn't going to send the orders today. I have no clue why. No chemo today. What a waste. Bah.
The nurse came in and was furious!! It was awesome! She said something about "kicking" my "doctor's butt" and then immediately apologized for being "extremely unprofessional." She explained that she was a patient advocate, and things like these especially infuriated her. Rock on!
She then gave me a $10 cafeteria voucher for all the inconvenience. Kinda silly to be spending thousands and thousands for hospital care, delaying your life-saving chemo, and wasting an entire day, only to be given a little $10 voucher. I got a bacon cheeseburger and fries. It was worth it :P
Plus, the good news is that they are going to start the hydration process in a couple of hours. That process takes at least 5 hours. The entire day won't be completely a waste, in other words. So, getting that out of the way, I will be able to start my day with a fresh cup of chemo.
Watching: League of Gentlemen (Silly BBC Comedy)
I just got settled in! I set up my laptop, plugged in Barbara's hard drive, put away my clothes, and politely refused to wear a gown. I mean, it doesn't make any sense! I want to feel human, not like some sick person! Granted, I am sick... but that doesn't mean I have to feel sick!
It's also funny that they all seem to think that, without a gown, I will choose to instead sleep in my jeans. "We have some pajama pants you can wear..." Maybe they're extremely prudish?
But it's like, "H-e-l-l-o!! I have Hodgkin's Lymphoma...anyone know what that means...anyone...anyone...Bueller?" Night sweats! And if you think I'm a going nite-nite in anything other than my undies, you got another thing coming!
So, no gown. :) I am, of course, wearing clothes :P
[12:28pm]
Red Warrior needs food badly!
Hmmm... I'm such a pig. Nurse is trying to explain all the upcoming chemo and side effects, and I'm like: "Yes, yes, but when is the food coming?" and she's like: "Well, usually lun..." and I'm like: "YES, FOOD! FOOD FOOD FOOD!"
*ahem* Yes. The point is that I'm not used to having to wait for food. I suppose I am spoiled in that regard. At home, when I am hungry, I eat. Simple as that. Accordingly, it has turned into somewhat of a personal obsession over the past thirty minutes. I think to myself: "I wonder what's going to be on the menu...French fries? No...they wouldn't dare...At least some type of desert object though...Thats good...But will they remember that I usually eat double portions? Or will they screw me on the first day?" Arrrgh! So much stress!
[1:24pm]
Hmmm....I found a Japanese Restaurant that will deliver here. I hope the staff here wouldn't consider that rude...
[1:47pm]
Ah, I've been fed. All is right in the world. Chemo hasn't started yet, but my lab results are in!
WBC: 5.1 [Nom: 4.8 to 10.8]
RBC: 3.8 [Nom: 4.7 to 6.1]
HGB: 11.7 [Nom: 14 to 18]
Slightly anemic, but not immunosuppressed. Chemo is a go!
[3:43pm]
Chemo is not a go! There hasn't been any chemo orders faxed from Irwin's office. The pharmacy closes at 4:30pm. No orders before 4:30pm means no chemo today. In other words, the whole day will be pointless. Bah, more stress. It's not fighting cancer, it's fighting to get treated!
[4:00pm]
Dr. C isn't going to send the orders today. I have no clue why. No chemo today. What a waste. Bah.
The nurse came in and was furious!! It was awesome! She said something about "kicking" my "doctor's butt" and then immediately apologized for being "extremely unprofessional." She explained that she was a patient advocate, and things like these especially infuriated her. Rock on!
She then gave me a $10 cafeteria voucher for all the inconvenience. Kinda silly to be spending thousands and thousands for hospital care, delaying your life-saving chemo, and wasting an entire day, only to be given a little $10 voucher. I got a bacon cheeseburger and fries. It was worth it :P
Plus, the good news is that they are going to start the hydration process in a couple of hours. That process takes at least 5 hours. The entire day won't be completely a waste, in other words. So, getting that out of the way, I will be able to start my day with a fresh cup of chemo.
Watching: League of Gentlemen (Silly BBC Comedy)
Tuesday, August 12, 2008
[8-12-08] Troubleshooting Life
[6:06am]
A little under four hours until the final is due... the pressure is on. Can he handle it? The judges are in-conference... they seem to indicate that...yes, yes he can indeed handle the pressure. The Swiss judge is citing a July term paper in which the protagonist chose to write on his own blog as a method of last-minute procrastination. It looks like the same strategy is in play here... how will it turn out?
[8:00am]
Mmmm, just had a three-egg breakfast with potatoes and italian sausage. Large mocha for added caffeine. Yummy. Now what was I doing?
[9:28am]
Just finished term paper! Wahoo! If anyone is curious about space-based solar power, it will be available at: here for a day or so.
[12:10pm]
Bah! One hurdle ends; another begins... I just got a call from Dr. Irwin's office: One of the nurses (not Becky) just wanted to confirm a pet-CT scan for the 19th! That's too early! My ICE treatment is scheduled to go from tomorrow until Sunday -- more time needs to pass before a scan can be completed... Or *is* my ICE treatment scheduled at all?
Just to be sure, I ask the nurse... "Oh, your treatment is scheduled for the 26th." WTF?!?!?! I'd like it to be known that I have mercilessly *insisted* to everyone that will listen that my ICE treatment starts tomorrow. Each time, both doctors and nurses have agreed. So again, wtf is going on? Grrr...
*sigh* I really wanted to just come home and relax... I finished the term paper, the class is over: I should feel good! Now everything is up in the air. They give me control over one aspect of my treatment: 2 week, or 3 week intervals between ICE. Determinedly, I choose the 2 week interval, thus convincing myself (through cognitive dissonance) that the increased neutropenic risks associated with a 2 week interval is worth the added blow to my evil tumor. In fact, I could delude myself into thinking that treatment occurring just 1 week earlier would cause a net reduction between 50 and 75% (because there is no time allowed to re-grow)! In that case, the ICE treatment has yielded sufficient results and I can proceed with a bone marrow transplant one month earlier! Perhaps that one month will save my life!
Oh wait.. They accidentally scheduled me for ICE a week from now, instead of tomorrow. I see. Scratch all that then. Grr.
[1:38pm]
Ahhhh, relief... Please excuse my momentary psychosis. All is right in the world. Becky has confirmed a 9:00-9:30am arrival time to summit hospital for ICE treatment for tomorrow, the 13th. There was some confusion about a mysteriously early pet-CT scan. It was not Becky's fault, and she is looking into it. Good.. Good. Pulse returning to normal...
[4:12pm]
I'm off to go buy a nice robe for tomorrow. Down to hospital gowns! Maybe I'll be able to find those fuzzy Odie slippers too. :P
[5:46pm]
Can you believe it?? Bed Bath and Beyond refuses to sell bathrobes for men! I guess Hugh Hefner has gone out of vogue. Oh well, I'm probably more comfy in pants anyhow. Truthfully, I'm just trying to find things to occupy my time until Christmas morning.
A little under four hours until the final is due... the pressure is on. Can he handle it? The judges are in-conference... they seem to indicate that...yes, yes he can indeed handle the pressure. The Swiss judge is citing a July term paper in which the protagonist chose to write on his own blog as a method of last-minute procrastination. It looks like the same strategy is in play here... how will it turn out?
[8:00am]
Mmmm, just had a three-egg breakfast with potatoes and italian sausage. Large mocha for added caffeine. Yummy. Now what was I doing?
[9:28am]
Just finished term paper! Wahoo! If anyone is curious about space-based solar power, it will be available at: here for a day or so.
[12:10pm]
Bah! One hurdle ends; another begins... I just got a call from Dr. Irwin's office: One of the nurses (not Becky) just wanted to confirm a pet-CT scan for the 19th! That's too early! My ICE treatment is scheduled to go from tomorrow until Sunday -- more time needs to pass before a scan can be completed... Or *is* my ICE treatment scheduled at all?
Just to be sure, I ask the nurse... "Oh, your treatment is scheduled for the 26th." WTF?!?!?! I'd like it to be known that I have mercilessly *insisted* to everyone that will listen that my ICE treatment starts tomorrow. Each time, both doctors and nurses have agreed. So again, wtf is going on? Grrr...
*sigh* I really wanted to just come home and relax... I finished the term paper, the class is over: I should feel good! Now everything is up in the air. They give me control over one aspect of my treatment: 2 week, or 3 week intervals between ICE. Determinedly, I choose the 2 week interval, thus convincing myself (through cognitive dissonance) that the increased neutropenic risks associated with a 2 week interval is worth the added blow to my evil tumor. In fact, I could delude myself into thinking that treatment occurring just 1 week earlier would cause a net reduction between 50 and 75% (because there is no time allowed to re-grow)! In that case, the ICE treatment has yielded sufficient results and I can proceed with a bone marrow transplant one month earlier! Perhaps that one month will save my life!
Oh wait.. They accidentally scheduled me for ICE a week from now, instead of tomorrow. I see. Scratch all that then. Grr.
[1:38pm]
Ahhhh, relief... Please excuse my momentary psychosis. All is right in the world. Becky has confirmed a 9:00-9:30am arrival time to summit hospital for ICE treatment for tomorrow, the 13th. There was some confusion about a mysteriously early pet-CT scan. It was not Becky's fault, and she is looking into it. Good.. Good. Pulse returning to normal...
[4:12pm]
I'm off to go buy a nice robe for tomorrow. Down to hospital gowns! Maybe I'll be able to find those fuzzy Odie slippers too. :P
[5:46pm]
Can you believe it?? Bed Bath and Beyond refuses to sell bathrobes for men! I guess Hugh Hefner has gone out of vogue. Oh well, I'm probably more comfy in pants anyhow. Truthfully, I'm just trying to find things to occupy my time until Christmas morning.
Monday, August 11, 2008
[8-11-08] The Beaten Dog Analogy
[8:36am]
Ah, what a beautiful morning! Everything's a bit more lovely without all that pain. And, believe it or not, I am not currently hopped up on Vicodin. :P I was afraid that the severity of the pain meant that it was something chronic or permanent. But it looks like it was passing. I did have to take like two Vicodin's every four hours until about 5am, when it started to resolve. It was a rough night's sleep.
Not just due to the pain, but also because of the sweating. For some reason, I was sweating a bunch -- mostly in the scalp. I'm talking, "wow, my pillow is wet" type sweating. I hope it's due to the pain medications, and not the traditional Hodge "night sweats."
By the way, I'd like to briefly mention the "Beaten Dog" analogy. It is perhaps one of the most widely applicable metaphors/analogies in existence. Basically, it describes the result if, 1>A Jerk were to beat his dog every day, then 2>Immediately stop beating his dog, and, as a result, 3>The dog loves him more for it.
I think people are very similar to the dog. If some entity causes me extreme pain, then causes it to stop, then I will wake up the next morning professing the beauty of his creation. Or, why is it that I feel profoundly grateful when the doctor who just gave me a bone marrow biopsy finishes the procedure?
Back to symptoms...
Then there's another thing on my mind. I can feel the tumor again. To put it eloquently, when I am in the bathroom applying "butt pressure," the tumor protrudes a bit from my chest. The first time I noticed this was after I received my second biopsy; I hadn't had any chemo yet. After I had some chemo, it gradually went away until I couldn't notice it anymore.
About a month after the Stanford V ended, I noticed the tumor's presence, but it wouldn't protrude like previously.
Now, it protrudes again. However, as strange as it sounds, I think this is a good thing. First off, it is a substantially smaller protrusion than before. More like a small plum, and less like an apple. Secondly, my gut feeling is that the tumor is just "loose." Give it a biopsy, or zap it with chemo, and the supportive structure of cells holding the thing upright breaks apart, and it has mobility. So, I'm not panicked. Still, it is disconcerting.
Oh yeah, I've got to start my final term paper, due in 25 hours. "gotta keep moving..." :P
[8:25pm] Food Celebration
I forgot to mention that this is my personal spoil Austin with food month. :) I'm making good progress today.
7:30am: Three Egg Breakfast, over easy, bacon, and potatoes.
11:45am: Super Nachos (Carne Asada) with grape flavored energy drink.
5:00pm: Tempura Roll, Crunchy Delight Roll.
8:30pm: 7-11 Nachos + 4 Jack-in-the-box tacos.
Ah, what a beautiful morning! Everything's a bit more lovely without all that pain. And, believe it or not, I am not currently hopped up on Vicodin. :P I was afraid that the severity of the pain meant that it was something chronic or permanent. But it looks like it was passing. I did have to take like two Vicodin's every four hours until about 5am, when it started to resolve. It was a rough night's sleep.
Not just due to the pain, but also because of the sweating. For some reason, I was sweating a bunch -- mostly in the scalp. I'm talking, "wow, my pillow is wet" type sweating. I hope it's due to the pain medications, and not the traditional Hodge "night sweats."
By the way, I'd like to briefly mention the "Beaten Dog" analogy. It is perhaps one of the most widely applicable metaphors/analogies in existence. Basically, it describes the result if, 1>A Jerk were to beat his dog every day, then 2>Immediately stop beating his dog, and, as a result, 3>The dog loves him more for it.
I think people are very similar to the dog. If some entity causes me extreme pain, then causes it to stop, then I will wake up the next morning professing the beauty of his creation. Or, why is it that I feel profoundly grateful when the doctor who just gave me a bone marrow biopsy finishes the procedure?
Back to symptoms...
Then there's another thing on my mind. I can feel the tumor again. To put it eloquently, when I am in the bathroom applying "butt pressure," the tumor protrudes a bit from my chest. The first time I noticed this was after I received my second biopsy; I hadn't had any chemo yet. After I had some chemo, it gradually went away until I couldn't notice it anymore.
About a month after the Stanford V ended, I noticed the tumor's presence, but it wouldn't protrude like previously.
Now, it protrudes again. However, as strange as it sounds, I think this is a good thing. First off, it is a substantially smaller protrusion than before. More like a small plum, and less like an apple. Secondly, my gut feeling is that the tumor is just "loose." Give it a biopsy, or zap it with chemo, and the supportive structure of cells holding the thing upright breaks apart, and it has mobility. So, I'm not panicked. Still, it is disconcerting.
Oh yeah, I've got to start my final term paper, due in 25 hours. "gotta keep moving..." :P
[8:25pm] Food Celebration
I forgot to mention that this is my personal spoil Austin with food month. :) I'm making good progress today.
7:30am: Three Egg Breakfast, over easy, bacon, and potatoes.
11:45am: Super Nachos (Carne Asada) with grape flavored energy drink.
5:00pm: Tempura Roll, Crunchy Delight Roll.
8:30pm: 7-11 Nachos + 4 Jack-in-the-box tacos.
Sunday, August 10, 2008
Barbara's Austin Report #2
Yesterday Friday August 8th was the key meeting at Stanford. The meeting which I somehow had the belief would be a 45 minute doctor interview beginning at 10:30am instead was an intense series of meetings with doctor and support specialists beginning at 11:30 and ending only shortly before 5pm. Afterwards all of us had a lot to think about.
We met with a social worker first whose job was obviously to screen incoming patients psychologically, evaluate their support network, get a picture of their lifestyle, and establish their financial condition. Jen and I left when the SW began probing into Austin's emotional makeup. I did not get the impression that she was particularly subtle or gentle with her probing.
The doctor is an Asst prof Med., a slight, Japanese-American woman. (I knew the name Arai was Japanese because of the popular Japanese singer Yumi Arai; I made an offhand comment about Yumi Arai and the doctor did not recognize the name, proving that she had not lived in Japan for any significant time, therefore she must be American born.) She is a asst. professor of medicine at Stanford as well as being a clinical physician. She gave us about an hour and a half, amazingly generous I thought, and every second was a dense flow of data.
Her explanation of the process was detailed. The auto-HSCT process is long, dangerous, difficult and complex. My overriding concern was the nature of the radiation treatments which had proven so effective at NWU. She made it clear that radiation played no part in the pre-BMT process at Stanford. I gave her the key journal article and her eyes first identified the group who were the authors, ("Ah yes, this group... I know them...") then looked at the chemo induction process in great detail. Her first comments were to simply say that Stanford did not use
radiation like this, commenting "This is a variation based on an older method...". But I pressed her a bit for more. She stumbled a bit when coming up with equivalent percentages but was willing to match NWU's excellent 83% 5-year EFS with Stanford's 80%. She added that with younger patients like Austin the OS (overall survival - includes a few patients with a successfully treated relapse or non-progressing disease) was perhaps 90%. That is quite excellent. Still, I worried that for
bulky patients like Austin the radiation might be necessary to get maximum tumor shrinkage. I was impressed that in a matter of moments she had located the chemo agents in the study and could tell me that the NWU group was forced to omit some chemicals because of the radiation, and she stressed that Stanford was able to use them because there was no radiation to interact. So, the tradeoff was less radiation for stronger chemo. Austin later asked for my opinion. Does his bulky tumor swing the advantage to NWU's method? I had to admit that I could not really
judge it with any confidence. The tradeoffs are too complicated for me. But I feel that the difference, if any, is small, perhaps tiny. The doctor stated that the mortality in the BMT at Stanford is less than 3%. That is the lowest I have seen claimed for any hospital. ("Good" is anything under 5%, some facilities are higher. When the procedure was new it was a frightening 15%.) She implied that for a young patient it might be even lower. So what do I tell Austin? I cannot see a clear
advantage in going to NWU. That is not to say that I cannot imagine an advantage. But the stature of Stanford is so high that more than imagining is needed. Dr. Irwin declared that Stanford is the best hospital in the world for lymphoma. I can also imagine a disadvantage for NWU, with dispersed radiation toxicity which could have been avoided. The exchange is... the possibility of increased longterm
radiation toxicity as payment for the possibility of more certain complete remission. Or conversely, with Stanford, the possibility of small lingering tumor mass at the time of BMT as payment for the possibility of lower clinical risk and fewer longterm secondary risks overall. This is what I imagine, but again, the doctorprovided suitable trade-offs for all NWU advantages. One can make a case either way. One can also argue that neither method is a mistake. If there is a
difference in overall success, it is small. I had been afraid that Stanford might be getting a 65% success rate to compare against NWU's 83%, but that is not the case. And NWU's figure was obtained with only 12 patients. The progenitor study for TLI in New York was about 80% in 1993. Stanford might argue the two methods are similar in success rate, but NWU unnecessarily risks some radiation toxicity. In my mind, perhaps the scale tilts slightly in Stanford's favor, or perhaps it is about
equal, but what matters most is Austin's feelings. He is happy with the Stanford treatment, so that is our path.
I must praise Stanford's program. The 5+ hours of meeting, talking, and planning were a masterpiece of patient interaction. Other hospitals might have called us back over and over to meet with a different person each time, but Stanford had arranged it so that it could be done in one day. This is undoubtedly in recognition of the distances traveled by some patients for lymphoma treatment, even halfway around the world I would guess. A massive 3-ring binder with staggering detail, a liason nurse who is preparing a complete calendar, a set of REQUIRED instructional courses for Austin's caregivers... it is awe-inspiring. This is a hospital which must surely be a model for others.
I liked that the doctor wanted to keep the journal article. Also, during a list of chemo agents, she mentioned Carmustine and I said "Is that a mustard derivative?" and Austin jumped in, "Yes, but it is a synthetic version...". The doctor was surprised and said, "You HAVE done a lot of reading..."
We met with a social worker first whose job was obviously to screen incoming patients psychologically, evaluate their support network, get a picture of their lifestyle, and establish their financial condition. Jen and I left when the SW began probing into Austin's emotional makeup. I did not get the impression that she was particularly subtle or gentle with her probing.
The doctor is an Asst prof Med., a slight, Japanese-American woman. (I knew the name Arai was Japanese because of the popular Japanese singer Yumi Arai; I made an offhand comment about Yumi Arai and the doctor did not recognize the name, proving that she had not lived in Japan for any significant time, therefore she must be American born.) She is a asst. professor of medicine at Stanford as well as being a clinical physician. She gave us about an hour and a half, amazingly generous I thought, and every second was a dense flow of data.
Her explanation of the process was detailed. The auto-HSCT process is long, dangerous, difficult and complex. My overriding concern was the nature of the radiation treatments which had proven so effective at NWU. She made it clear that radiation played no part in the pre-BMT process at Stanford. I gave her the key journal article and her eyes first identified the group who were the authors, ("Ah yes, this group... I know them...") then looked at the chemo induction process in great detail. Her first comments were to simply say that Stanford did not use
radiation like this, commenting "This is a variation based on an older method...". But I pressed her a bit for more. She stumbled a bit when coming up with equivalent percentages but was willing to match NWU's excellent 83% 5-year EFS with Stanford's 80%. She added that with younger patients like Austin the OS (overall survival - includes a few patients with a successfully treated relapse or non-progressing disease) was perhaps 90%. That is quite excellent. Still, I worried that for
bulky patients like Austin the radiation might be necessary to get maximum tumor shrinkage. I was impressed that in a matter of moments she had located the chemo agents in the study and could tell me that the NWU group was forced to omit some chemicals because of the radiation, and she stressed that Stanford was able to use them because there was no radiation to interact. So, the tradeoff was less radiation for stronger chemo. Austin later asked for my opinion. Does his bulky tumor swing the advantage to NWU's method? I had to admit that I could not really
judge it with any confidence. The tradeoffs are too complicated for me. But I feel that the difference, if any, is small, perhaps tiny. The doctor stated that the mortality in the BMT at Stanford is less than 3%. That is the lowest I have seen claimed for any hospital. ("Good" is anything under 5%, some facilities are higher. When the procedure was new it was a frightening 15%.) She implied that for a young patient it might be even lower. So what do I tell Austin? I cannot see a clear
advantage in going to NWU. That is not to say that I cannot imagine an advantage. But the stature of Stanford is so high that more than imagining is needed. Dr. Irwin declared that Stanford is the best hospital in the world for lymphoma. I can also imagine a disadvantage for NWU, with dispersed radiation toxicity which could have been avoided. The exchange is... the possibility of increased longterm
radiation toxicity as payment for the possibility of more certain complete remission. Or conversely, with Stanford, the possibility of small lingering tumor mass at the time of BMT as payment for the possibility of lower clinical risk and fewer longterm secondary risks overall. This is what I imagine, but again, the doctorprovided suitable trade-offs for all NWU advantages. One can make a case either way. One can also argue that neither method is a mistake. If there is a
difference in overall success, it is small. I had been afraid that Stanford might be getting a 65% success rate to compare against NWU's 83%, but that is not the case. And NWU's figure was obtained with only 12 patients. The progenitor study for TLI in New York was about 80% in 1993. Stanford might argue the two methods are similar in success rate, but NWU unnecessarily risks some radiation toxicity. In my mind, perhaps the scale tilts slightly in Stanford's favor, or perhaps it is about
equal, but what matters most is Austin's feelings. He is happy with the Stanford treatment, so that is our path.
I must praise Stanford's program. The 5+ hours of meeting, talking, and planning were a masterpiece of patient interaction. Other hospitals might have called us back over and over to meet with a different person each time, but Stanford had arranged it so that it could be done in one day. This is undoubtedly in recognition of the distances traveled by some patients for lymphoma treatment, even halfway around the world I would guess. A massive 3-ring binder with staggering detail, a liason nurse who is preparing a complete calendar, a set of REQUIRED instructional courses for Austin's caregivers... it is awe-inspiring. This is a hospital which must surely be a model for others.
I liked that the doctor wanted to keep the journal article. Also, during a list of chemo agents, she mentioned Carmustine and I said "Is that a mustard derivative?" and Austin jumped in, "Yes, but it is a synthetic version...". The doctor was surprised and said, "You HAVE done a lot of reading..."
[8-10-08] Back Pain ER Visit
[6:05pm]
I just got out of the ER a few hours ago. They gave me some very strong pain medication, so putting this entry together is taking a little cognitive effort. I feel like I'm in a medical drama or something -- all this action lately. The story starts yesterday afternoon...
Dan gives me a call: "Are you bored? I was thinking of getting a hotel on the Oakland waterfront." Awesome, I was truly stoked. The last time we celebrated like that was in San Francisco, like 5 years ago. I remember drinking beers in the SF hotel lobby, and getting chocolate ice cream all over the place. It was awesome.
So, here's yet another chance to live it up. Plus, it's never been just the two of us. This was a special treat. Yet one more chance to "pull one from the Devil's teeth." I agreed. "Beer's in the cellar around 5:15pm. Chopper is inbound." Six months without alcohol. I've got to live it up while I still can.
The hotel room was incredible. There was a balcony with a view of the waterfront, a giant bathroom, and the room was huge! So, we had many beers, ate excellent meat, and had a great time.
I woke up the next morning with terrible back pain. Usually, I just have to sit up, or walk around, and the pain will subside. If it's really bad, a warm bath always helps. Two warm baths later, and the pain was getting worse. I told Dan that I had to go, and left with the intention of getting some pain meds and returning later. My aunt was having a birthday party, and the plan was to head over there later in the day.
By the time I was in the hotel lobby, I knew I needed to go to the hospital. I interrupt the concierge's conversation with a customer... "Sorry to interrupt, but can you give me directions to the nearest hospital?" I then drove my motorcycle there. In retrospect, perhaps I shouldn't have, but I wanted relief fast. I didn't want to wait for anything!
I arrive at the hospital around 7:30am. I wait in line for the triage nurse, and explain: "I am experiencing tremendous back-pain." I knew it sounded trivial... I mean, I wasn't gushing blood or having a heart attack or anything. I half expected him to be like, "Go take some Tylenol, there's a 7-11 around the corner." It's back pain.
When he asked me what I would rate the pain, I said "an eight." To illustrate, at that moment, the pain was at a level where talking was difficult. I would frequently gasp, twitch, or spasm. It was simultaneously muscle and bone pain; pulsating and constant. I was trembling and sweating. I've never experienced this type of pain before. Yes, the bone marrow biopsy was a 10, but this pain had no end in sight -- it just wasn't going away.
After filling out all the forms and whatnot, I was directed to wait in urgent care. I was too ecstatic at the prospect of pain relief, at that point, to fully understand that if was a very bad thing to be sent to urgent care. This is emergency pain. Nevertheless, I waited in the lobby.
For perhaps the longest hour and a half of my life, I waited in the lobby. I expected to be called any minute. I mean, the guy *saw* how much pain I was in -- you can't just ignore that! There were many people in the urgent care waiting area, all of them looking pretty OK. On the other hand, they probably thought I was crazy. I would sit down, stand up, sit on the floor, pace the floor, walk to the triage nurse, visit the coke machines, walk around a pillar in circles, etc.. I had to keep moving. Through all of this, I'm also making little grunting noises. Suffice it to say, the security guards were keeping a good watch on me.
Then the pain began to get worse. My chest began to hurt as well -- probably due to all that labored breathing and whatnot. I couldn't handle the wait anymore. I wanted to start punching walls, or go rob a pharmacy or something. I was so frustrated with the utter relentlessness of the pain. 7th tear this year. But then I got a desperate idea! Chest pain = ER. I had chest pain. So I ran back to the triage nurse, and explained my new symptom. The triage nurse sent me back to urgent care at the front of the line, and then the urgent care nurse said: "You have chest pain? We're not equipped for that here. You need to go to the ER and get hooked up to an EKG. Go back to the triage nurse."
The triage nurse was inept. Not an uncommon trait in this hospital. At that moment, I noticed that it was a county hospital. Nevertheless, I was then escorted into the ER.
Finally! The nurse had me change into a gown, and check my vitals. No pain meds yet, but the end was in sight! I was being treated, and knowing that the pain would soon end made it much easier to handle. At around 10:00am, the doctor arrived.
He was a nice guy. He got my history and symptoms, and then immediately recognized how much pain I was in. "Well, your pulse is 133 -- that's probably because you're in so much pain right now. Your temp is 99.5. Nurse, get him 8mg of morphine. You can handle morphine, right?"
In an effort not to look like a drug-seeking morphine junkie, I tried not to smile. I failed miserably.
"Well, we can't diagnose if there's any cardiac problems at the moment -- you're trembling too much for the EKG to generate good results. Let's get you some relief, and then proceed with the tests." Works for me.
The nurse took 30 minutes to come back with the morphine. I was pissed. After she injected it, I was shocked to notice that I felt no relief. "How long does it take to have an effect?" She says, "About 30 minutes. That's because I did it intra-muscular. If I had injected it into a vain, it would've been pretty instant. Maybe I should've done that instead..." Uh, yes. You should have.
After about 30 minutes, another friendly doctor checked in on me. "How's the pain," she asks. "Still ridiculous," I say. She smiles. "Well get you something much stronger than morphine, then."
30 more minutes pass, and the doctor checks in again... "Feeling better?" "Uhm, nope -- I haven't received any more pain meds." Shocked, she storms off and finds my nurse... "Get this poor man some [name of drug], stat!"
After the nurse pokes me a few times for the IV, and gets blood all over, she begins to administer the drug (it's like 11:30am). After about 5 minutes, the pain went from a 9 to a 4. I was so relieved. I started to breathe normally, my pulse started to go down, my trembling stopped... It was so nice to be with less pain, after all this time. The drug made me really tired, but I couldn't get to sleep -- it was still too painful to doze off. But at least I felt somewhat human again.
The first doctor returns, and I express my overwhelming gratitude to be without pain. He proceeds to order scans to see if the tumor has metastasized into the spine, or if there's a clot in the lungs... They perform the tests, and give me another shot of the pain med about an hour later. At that time, the pain was nearly gone -- it was great! It did make me sweat profusely though -- that was annoying.
The doctor returns yet again, announces that all my scans were good, and writes me a prescription for vicodin. He was unable to determine what caused pain, and simply said, "If it returns we'll dig deeper. Perhaps you slept awkwardly or something." I told him that sleeping oddly doesn't cause this amount of pain. He agreed.
Then he discharged me, and told me to "Say hello to Doctor Irwin." Apparently, they knew each other.
So, I drove home, picked up the Vicodin, took two preemptively, and here I am. The pain is pretty much gone. I don't know what caused it, but I'm certainly glad it isn't there anymore. So, that's my adventure! I'm a gonna try to get some sleep now.
I just got out of the ER a few hours ago. They gave me some very strong pain medication, so putting this entry together is taking a little cognitive effort. I feel like I'm in a medical drama or something -- all this action lately. The story starts yesterday afternoon...
Dan gives me a call: "Are you bored? I was thinking of getting a hotel on the Oakland waterfront." Awesome, I was truly stoked. The last time we celebrated like that was in San Francisco, like 5 years ago. I remember drinking beers in the SF hotel lobby, and getting chocolate ice cream all over the place. It was awesome.
So, here's yet another chance to live it up. Plus, it's never been just the two of us. This was a special treat. Yet one more chance to "pull one from the Devil's teeth." I agreed. "Beer's in the cellar around 5:15pm. Chopper is inbound." Six months without alcohol. I've got to live it up while I still can.
The hotel room was incredible. There was a balcony with a view of the waterfront, a giant bathroom, and the room was huge! So, we had many beers, ate excellent meat, and had a great time.
I woke up the next morning with terrible back pain. Usually, I just have to sit up, or walk around, and the pain will subside. If it's really bad, a warm bath always helps. Two warm baths later, and the pain was getting worse. I told Dan that I had to go, and left with the intention of getting some pain meds and returning later. My aunt was having a birthday party, and the plan was to head over there later in the day.
By the time I was in the hotel lobby, I knew I needed to go to the hospital. I interrupt the concierge's conversation with a customer... "Sorry to interrupt, but can you give me directions to the nearest hospital?" I then drove my motorcycle there. In retrospect, perhaps I shouldn't have, but I wanted relief fast. I didn't want to wait for anything!
I arrive at the hospital around 7:30am. I wait in line for the triage nurse, and explain: "I am experiencing tremendous back-pain." I knew it sounded trivial... I mean, I wasn't gushing blood or having a heart attack or anything. I half expected him to be like, "Go take some Tylenol, there's a 7-11 around the corner." It's back pain.
When he asked me what I would rate the pain, I said "an eight." To illustrate, at that moment, the pain was at a level where talking was difficult. I would frequently gasp, twitch, or spasm. It was simultaneously muscle and bone pain; pulsating and constant. I was trembling and sweating. I've never experienced this type of pain before. Yes, the bone marrow biopsy was a 10, but this pain had no end in sight -- it just wasn't going away.
After filling out all the forms and whatnot, I was directed to wait in urgent care. I was too ecstatic at the prospect of pain relief, at that point, to fully understand that if was a very bad thing to be sent to urgent care. This is emergency pain. Nevertheless, I waited in the lobby.
For perhaps the longest hour and a half of my life, I waited in the lobby. I expected to be called any minute. I mean, the guy *saw* how much pain I was in -- you can't just ignore that! There were many people in the urgent care waiting area, all of them looking pretty OK. On the other hand, they probably thought I was crazy. I would sit down, stand up, sit on the floor, pace the floor, walk to the triage nurse, visit the coke machines, walk around a pillar in circles, etc.. I had to keep moving. Through all of this, I'm also making little grunting noises. Suffice it to say, the security guards were keeping a good watch on me.
Then the pain began to get worse. My chest began to hurt as well -- probably due to all that labored breathing and whatnot. I couldn't handle the wait anymore. I wanted to start punching walls, or go rob a pharmacy or something. I was so frustrated with the utter relentlessness of the pain. 7th tear this year. But then I got a desperate idea! Chest pain = ER. I had chest pain. So I ran back to the triage nurse, and explained my new symptom. The triage nurse sent me back to urgent care at the front of the line, and then the urgent care nurse said: "You have chest pain? We're not equipped for that here. You need to go to the ER and get hooked up to an EKG. Go back to the triage nurse."
The triage nurse was inept. Not an uncommon trait in this hospital. At that moment, I noticed that it was a county hospital. Nevertheless, I was then escorted into the ER.
Finally! The nurse had me change into a gown, and check my vitals. No pain meds yet, but the end was in sight! I was being treated, and knowing that the pain would soon end made it much easier to handle. At around 10:00am, the doctor arrived.
He was a nice guy. He got my history and symptoms, and then immediately recognized how much pain I was in. "Well, your pulse is 133 -- that's probably because you're in so much pain right now. Your temp is 99.5. Nurse, get him 8mg of morphine. You can handle morphine, right?"
In an effort not to look like a drug-seeking morphine junkie, I tried not to smile. I failed miserably.
"Well, we can't diagnose if there's any cardiac problems at the moment -- you're trembling too much for the EKG to generate good results. Let's get you some relief, and then proceed with the tests." Works for me.
The nurse took 30 minutes to come back with the morphine. I was pissed. After she injected it, I was shocked to notice that I felt no relief. "How long does it take to have an effect?" She says, "About 30 minutes. That's because I did it intra-muscular. If I had injected it into a vain, it would've been pretty instant. Maybe I should've done that instead..." Uh, yes. You should have.
After about 30 minutes, another friendly doctor checked in on me. "How's the pain," she asks. "Still ridiculous," I say. She smiles. "Well get you something much stronger than morphine, then."
30 more minutes pass, and the doctor checks in again... "Feeling better?" "Uhm, nope -- I haven't received any more pain meds." Shocked, she storms off and finds my nurse... "Get this poor man some [name of drug], stat!"
After the nurse pokes me a few times for the IV, and gets blood all over, she begins to administer the drug (it's like 11:30am). After about 5 minutes, the pain went from a 9 to a 4. I was so relieved. I started to breathe normally, my pulse started to go down, my trembling stopped... It was so nice to be with less pain, after all this time. The drug made me really tired, but I couldn't get to sleep -- it was still too painful to doze off. But at least I felt somewhat human again.
The first doctor returns, and I express my overwhelming gratitude to be without pain. He proceeds to order scans to see if the tumor has metastasized into the spine, or if there's a clot in the lungs... They perform the tests, and give me another shot of the pain med about an hour later. At that time, the pain was nearly gone -- it was great! It did make me sweat profusely though -- that was annoying.
The doctor returns yet again, announces that all my scans were good, and writes me a prescription for vicodin. He was unable to determine what caused pain, and simply said, "If it returns we'll dig deeper. Perhaps you slept awkwardly or something." I told him that sleeping oddly doesn't cause this amount of pain. He agreed.
Then he discharged me, and told me to "Say hello to Doctor Irwin." Apparently, they knew each other.
So, I drove home, picked up the Vicodin, took two preemptively, and here I am. The pain is pretty much gone. I don't know what caused it, but I'm certainly glad it isn't there anymore. So, that's my adventure! I'm a gonna try to get some sleep now.
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.
[8-08-08] Frozen Yogurt Aggression
[1:12am]
Today was a huge day! I just got home a few minutes ago, and wanted to say a bit about the big Stanford Bone Marrow Transplant Clinic before I doze off. But there's just too much info, and I'm too tired -- so I'll do it tomorrow.
But before I go, let me say a few words about the dangers of frozen yogurt. Yes, frozen yogurt.
I've always been somewhat of a minimalist. I try not to have to many unnecessary possessions and I try to keep my life simple. In a way, that has combined with the "college-student frugality" and extended to absurdity. For example, I haven't gone out for ice cream in ages. I mean, it costs like $5 and it doesn't fill you up! So, what's the point? Why not just get a big juicy burger or something -- at least that *feeds* you. Accordingly, instead of going out for ice cream, I'd just allocate the money of yummy fast food or something.
My current situation has forced me to re-evaluate that philosophy. And I've discovered that I have quite a lot of catching up to do. I've been going to all the different frozen yogurt places in Berkeley for the past week or so; trying all the different flavors. In fact, Liz and I just got back from Baskin Robbins after I satisfied a huge PB & Chocolate craving. My point is that you will frequently find me, walking home from class, while gleefully munching on a giant bowl of frozen yogurt. You can eat SO MUCH more frozen yogurt than ice cream, it's great!
So, how is this dangerous?
For some reason, two days in a row, while I was eating frozen yogurt, I was verbally assaulted and threatened by the homeless around telegraph. It starts with a rude comment from them, me looking blankly and continuing to eat my yogurt, and then the threats of physical violence. Maybe it's because, with all this going on, I'm really not intimidated or scared. After a bone marrow biopsy, fear of a little fist fight seems ridiculous. Or maybe it's because I'm so carefree while I'm eating the yogurt. It's as if the yogurt is some untold beacon of aggression. I don't know. Whatever it is, it seems to upset them.
And although I'm a pacifist, and consider myself to not be an overall jerk, I thought to myself: "What if, instead of just ignoring them, I stood my ground and put my dukes up?" Going the path of least resistance is what I always do -- why shouldn't I try something new, have a new experience... What have I got to lose?
Then the thought faded, and I quickly became absorbed yet-again in my blackberry swirl. However, I thought about it a bit later, and realized to my amusement, that it wouldn't have been a fair fight.
Two outcomes:
1> I lose: Then this jerk just beat up a dude with cancer. Can you believe that? That's so not cool.
2> I win: Then this dude with cancer just beat this jerk up. He's anemic and has no white blood cells, but he can still kick your ass. What a loser.
Now here's why I told this story... Thursday, my sister told me that she felt my blog has a "positive spin" or something. There is no "positive spin" in any of this -- I'm desperately trying to 100% accurately document my feelings, observations, and experiences without any sort of sugar coating whatsoever. I need this to be truth, not story. That last entry was 100% how I feel.
When I was doing my own research into Hodgkin's, I looked to internet blogs for guidance and information. It was a great resource, but it seemed like a lot of the gory details (i.e., diarrhea) or negative emotions were left out. I wanted to know just how bad it got.
So, in an effort to maintain journalistic integrity, I'm writing a detailed story about how I regressed to a high-school kid while eating frozen yogurt. I thought those thoughts and they were related to my "journey" -- so they get written down. In addition, I vow to continue to document all of my silly, negative, mean-spirited, stupid, ambitious, optimistic, pessimistic, embarrassing, loving, greedy, and otherwise not-OK thoughts! Lack of censorship is what makes it real.
Today was a huge day! I just got home a few minutes ago, and wanted to say a bit about the big Stanford Bone Marrow Transplant Clinic before I doze off. But there's just too much info, and I'm too tired -- so I'll do it tomorrow.
But before I go, let me say a few words about the dangers of frozen yogurt. Yes, frozen yogurt.
I've always been somewhat of a minimalist. I try not to have to many unnecessary possessions and I try to keep my life simple. In a way, that has combined with the "college-student frugality" and extended to absurdity. For example, I haven't gone out for ice cream in ages. I mean, it costs like $5 and it doesn't fill you up! So, what's the point? Why not just get a big juicy burger or something -- at least that *feeds* you. Accordingly, instead of going out for ice cream, I'd just allocate the money of yummy fast food or something.
My current situation has forced me to re-evaluate that philosophy. And I've discovered that I have quite a lot of catching up to do. I've been going to all the different frozen yogurt places in Berkeley for the past week or so; trying all the different flavors. In fact, Liz and I just got back from Baskin Robbins after I satisfied a huge PB & Chocolate craving. My point is that you will frequently find me, walking home from class, while gleefully munching on a giant bowl of frozen yogurt. You can eat SO MUCH more frozen yogurt than ice cream, it's great!
So, how is this dangerous?
For some reason, two days in a row, while I was eating frozen yogurt, I was verbally assaulted and threatened by the homeless around telegraph. It starts with a rude comment from them, me looking blankly and continuing to eat my yogurt, and then the threats of physical violence. Maybe it's because, with all this going on, I'm really not intimidated or scared. After a bone marrow biopsy, fear of a little fist fight seems ridiculous. Or maybe it's because I'm so carefree while I'm eating the yogurt. It's as if the yogurt is some untold beacon of aggression. I don't know. Whatever it is, it seems to upset them.
And although I'm a pacifist, and consider myself to not be an overall jerk, I thought to myself: "What if, instead of just ignoring them, I stood my ground and put my dukes up?" Going the path of least resistance is what I always do -- why shouldn't I try something new, have a new experience... What have I got to lose?
Then the thought faded, and I quickly became absorbed yet-again in my blackberry swirl. However, I thought about it a bit later, and realized to my amusement, that it wouldn't have been a fair fight.
Two outcomes:
1> I lose: Then this jerk just beat up a dude with cancer. Can you believe that? That's so not cool.
2> I win: Then this dude with cancer just beat this jerk up. He's anemic and has no white blood cells, but he can still kick your ass. What a loser.
Now here's why I told this story... Thursday, my sister told me that she felt my blog has a "positive spin" or something. There is no "positive spin" in any of this -- I'm desperately trying to 100% accurately document my feelings, observations, and experiences without any sort of sugar coating whatsoever. I need this to be truth, not story. That last entry was 100% how I feel.
When I was doing my own research into Hodgkin's, I looked to internet blogs for guidance and information. It was a great resource, but it seemed like a lot of the gory details (i.e., diarrhea) or negative emotions were left out. I wanted to know just how bad it got.
So, in an effort to maintain journalistic integrity, I'm writing a detailed story about how I regressed to a high-school kid while eating frozen yogurt. I thought those thoughts and they were related to my "journey" -- so they get written down. In addition, I vow to continue to document all of my silly, negative, mean-spirited, stupid, ambitious, optimistic, pessimistic, embarrassing, loving, greedy, and otherwise not-OK thoughts! Lack of censorship is what makes it real.
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