[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.
Friday, August 15, 2008
[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.
Thursday, August 7, 2008
[8-07-08] Life... is good!
[12:03pm]
I'm not implying causality or anything, but ever since this Hodgkin's thingy, my quality of life seems to have gone up. Interesting how that works, isn't it?
Take, for example, last night. I had a huge final presentation today that had been bumped up a week early so I could stop attending class early (due to hospitalization on 13th). Was I diligently cramming the material before the impending doom? Nope - I was hanging out with Liz until late at night. Priorities!
Then, I calmly woke up at 5:00am the next morning, had a coffee, and got to work. Calmly I plugged along, not sweating the small stuff, just enjoying the act of creation. In short, I was in the flow. Had I been stressed, concerned about my grade, or anything else, my efforts would have been frantic, and disheveled. Most importantly, it wouldn't be fun anymore. Somehow, I am slowly learning how to enjoy things a bit more -- and that's making all the difference in the world.
I got an A- (my first non-hybrid grade!) on my final 10min presentation, did a great job, and had a good time doing it. I'm willing to wager that, had I studied and crammed all night before, and failed to have fun, that I would've gotten a considerably lesser score.
Then it all comes full circle: is this new perspective a result of the Hodgkin's? Perhaps so. Silver lining indeed. Just for argument's sake, let's take it one step further...
To my friends and family, let me first apologize a bit... I know that me having this disease is a terrible pain and burden to you all; I don't want you to think that I'm belittling that by talking about this "silver lining." But there are some positives...
Come Tuesday, I'm out of school! Normally, this would have me in a frenzy. But now that I think about it, it is a true and genuine vacation. For once in my life, I don't have to worry about future career ambitions, or getting good grades for grad schools, or how I'm wasting away my life. All that is put aside. Just enjoy.
Oh, and what people think? If they're not my friends and family, who cares? Make stupid jokes to random strangers. Assert yourself! Be silly!
And friends and family, most of all! It may not be PC to say, but this whole thing has brought us together! TJ, Mom, and Dad are leaving fun little comments on my blog; we're more connected now. Liz's mom is working in tandem with Barbara, and sending me best wishes with a quilt. And Liz, where just the mention makes me smile... Jen, Dan, and the kids are all being there, together, to do what they can. Taunte Laurie, Taunte Theresa, my aunts, my cousins, all keeping in touch and wishing me well. I've never felt so connected in my life! Thank you all.
So hell yeah, I'm happy! And if it helps, consider me getting chemo with a smile on my face -- because I'll be wearing one. "Nothing like a little Cisplatin in the morning to take the edge off."
I'm not implying causality or anything, but ever since this Hodgkin's thingy, my quality of life seems to have gone up. Interesting how that works, isn't it?
Take, for example, last night. I had a huge final presentation today that had been bumped up a week early so I could stop attending class early (due to hospitalization on 13th). Was I diligently cramming the material before the impending doom? Nope - I was hanging out with Liz until late at night. Priorities!
Then, I calmly woke up at 5:00am the next morning, had a coffee, and got to work. Calmly I plugged along, not sweating the small stuff, just enjoying the act of creation. In short, I was in the flow. Had I been stressed, concerned about my grade, or anything else, my efforts would have been frantic, and disheveled. Most importantly, it wouldn't be fun anymore. Somehow, I am slowly learning how to enjoy things a bit more -- and that's making all the difference in the world.
I got an A- (my first non-hybrid grade!) on my final 10min presentation, did a great job, and had a good time doing it. I'm willing to wager that, had I studied and crammed all night before, and failed to have fun, that I would've gotten a considerably lesser score.
Then it all comes full circle: is this new perspective a result of the Hodgkin's? Perhaps so. Silver lining indeed. Just for argument's sake, let's take it one step further...
To my friends and family, let me first apologize a bit... I know that me having this disease is a terrible pain and burden to you all; I don't want you to think that I'm belittling that by talking about this "silver lining." But there are some positives...
Come Tuesday, I'm out of school! Normally, this would have me in a frenzy. But now that I think about it, it is a true and genuine vacation. For once in my life, I don't have to worry about future career ambitions, or getting good grades for grad schools, or how I'm wasting away my life. All that is put aside. Just enjoy.
Oh, and what people think? If they're not my friends and family, who cares? Make stupid jokes to random strangers. Assert yourself! Be silly!
And friends and family, most of all! It may not be PC to say, but this whole thing has brought us together! TJ, Mom, and Dad are leaving fun little comments on my blog; we're more connected now. Liz's mom is working in tandem with Barbara, and sending me best wishes with a quilt. And Liz, where just the mention makes me smile... Jen, Dan, and the kids are all being there, together, to do what they can. Taunte Laurie, Taunte Theresa, my aunts, my cousins, all keeping in touch and wishing me well. I've never felt so connected in my life! Thank you all.
So hell yeah, I'm happy! And if it helps, consider me getting chemo with a smile on my face -- because I'll be wearing one. "Nothing like a little Cisplatin in the morning to take the edge off."
Wednesday, August 6, 2008
[8-06-08] Term Paper and Appt. Results
[11:53am]
Well, I just received my term paper back. I got somewhere between an A- and a B+, whatever that means. For some reason, every grade I have received has been some sort of hybrid of some kind; no point scale.
Anyhow, what caught my attention was what was written in the margin below the grade... It said, "Good Work, Mr. A., no doubt under trying circumstances -- to say the least."
It made me smile to read that. That was better than the grade, you know?
[4:49pm]
After getting my labs done, I spoke with Dr. Cecchi and got the plans rolling. My labs were good: RBC falling very slowly, while the WBC was up at 13.7 (due to Neulasta shot). In other words, I was good to go.
They're scheduling me for more inpatient ICE at summit (on the 13th), a pet-CT scan to verify ICE is working (around the 20th), and a follow-up oncology visit to discuss results (before 26th). The thought being, if I have clean scans after the second cycle(probably not likely), then I can skip the last two cycles of ICE and go straight to the bone marrow transplant part. If, after the next cycle of ICE, the pet-CT scan shows significant reduction (which I think is most likely), then we continue with two more cycles and finish with the BMT. Lastly, if the scans indicate little or no progress, then that's no good -- from what I read, response to ICE is necessary to indicate the BMT procedure. In other words, I'd have to look for different options. But that's getting ahead of things. I'm just hoping the next scans show a reduction.
So, that's the plan so far!
Well, I just received my term paper back. I got somewhere between an A- and a B+, whatever that means. For some reason, every grade I have received has been some sort of hybrid of some kind; no point scale.
Anyhow, what caught my attention was what was written in the margin below the grade... It said, "Good Work, Mr. A., no doubt under trying circumstances -- to say the least."
It made me smile to read that. That was better than the grade, you know?
[4:49pm]
After getting my labs done, I spoke with Dr. Cecchi and got the plans rolling. My labs were good: RBC falling very slowly, while the WBC was up at 13.7 (due to Neulasta shot). In other words, I was good to go.
They're scheduling me for more inpatient ICE at summit (on the 13th), a pet-CT scan to verify ICE is working (around the 20th), and a follow-up oncology visit to discuss results (before 26th). The thought being, if I have clean scans after the second cycle(probably not likely), then I can skip the last two cycles of ICE and go straight to the bone marrow transplant part. If, after the next cycle of ICE, the pet-CT scan shows significant reduction (which I think is most likely), then we continue with two more cycles and finish with the BMT. Lastly, if the scans indicate little or no progress, then that's no good -- from what I read, response to ICE is necessary to indicate the BMT procedure. In other words, I'd have to look for different options. But that's getting ahead of things. I'm just hoping the next scans show a reduction.
So, that's the plan so far!
Tuesday, August 5, 2008
[8-05-08] The mythical "chemo-brain"
[6:34pm]
Some thoughts on this so-called chemo-brain. Is it a myth? My original belief was that there was little empirical evidence to support it.
Guess that's changed.
D'uh. So, next time I leave my xbox 360 in the refrigerator, you'll know why! (Unless I'm trying to resolve heating issues, that is). Anyhow, perhaps it would be fun to do a study of my own... Maybe Barbara can play me chess a bunch while I'm in the hospital and benchmark my chess-playing ability. :P
::mumble mumble:: stupiddroolalwaysgettingonmyspacebar.
Some thoughts on this so-called chemo-brain. Is it a myth? My original belief was that there was little empirical evidence to support it.
Guess that's changed.
Japanese researchers used magnetic resonance imaging to show that cancer drugs can cause temporary shrinkage in brain structures involved in cognition and awareness (Cancer, Jan. 1, 2007). The brain imaging was performed on three groups of women: breast cancer survivors who had received chemotherapy, breast cancer survivors who had not undergone chemotherapy, and a healthy control group. Compared to the other women, the chemotherapy recipients had less white matter (information-transmitting cells) and gray matter (information-processing cells) in regions of the brain involved in attention, planning, judgment, remembering, and self-awareness. Shrinkage in these areas correlated with generally lower scores on measures of attention, concentration, and visual memory.In addition, scientists at the University of Rochester Medical Center Medical Center, found that one of the cancer drugs that I'm taking, cisplatin, is more toxic to healthy brain cells than to cancer cells (Journal of Biology, Nov. 30, 2006) — at least in laboratory cell cultures:
In the lab setting, these drugs killed 70%–100% of brain cells — but only 40%–80% of cancer cells. Animal studies showed that such effects lasted for at least six weeks after treatment. The drugs harmed various types of cells, including neurons that contribute to signal transmission in the brain.
The University of Rochester team speculates that these cancer drugs may block new cell formation in the hippocampus, a brain structure essential to memory and learning. The researchers stress that no one should avoid chemotherapy because of these preliminary results. But they suggest that their findings offer a physiological explanation for chemobrain and could eventually lead to ways of protecting the brain during chemotherapy.
D'uh. So, next time I leave my xbox 360 in the refrigerator, you'll know why! (Unless I'm trying to resolve heating issues, that is). Anyhow, perhaps it would be fun to do a study of my own... Maybe Barbara can play me chess a bunch while I'm in the hospital and benchmark my chess-playing ability. :P
::mumble mumble:: stupiddroolalwaysgettingonmyspacebar.
[8-05-08] Wednesday Oncology Appt.
[8:59am]
Good news! I have an appointment with Dr. Cecchi on Wednesday at 2:45pm (labs) and 3:30pm (doc). So, my evil plans for more ICE treatment on the 13th are still in-place. Mwa ha ha. Er, ok, I'm still half asleep.
Becky had me agree to a quick lab check-up on Monday the 11th before re-admit.
On a side note, this whole "get the ICE treatment done every two weeks" thing makes me feel like I have some power in all of this, ya know? Like I'm cheating the system. The secret they don't tell you in school: cheaters win. :P
Mwa, oh yeah. Time to turn in my completely terri...I mean, my complete term paper!
[3:26pm]
More good news! After consulting with my school's social services person, we have outlined a plan that will enable me to have school insurance for the Fall and get a tuition refund! The downside to this is that I will be ineligible for any financial aid whatsoever for Fall 09. Still, things are looking good today!
On the school front: I talked to my professor, and got everything worked out. It was a bit scary because I half expected him to say, "Well, you might as well just drop the class..." But he worked with me, and outlined a pretty rigorous schedule (since next Tuesday will be my final day of class). Final Presentation: This Thursday. Final Paper: Next Tuesday. So at least I should be busy this next week!
Currently Eating: A giant heap of blackberry frozen yogurt.
Good news! I have an appointment with Dr. Cecchi on Wednesday at 2:45pm (labs) and 3:30pm (doc). So, my evil plans for more ICE treatment on the 13th are still in-place. Mwa ha ha. Er, ok, I'm still half asleep.
Becky had me agree to a quick lab check-up on Monday the 11th before re-admit.
On a side note, this whole "get the ICE treatment done every two weeks" thing makes me feel like I have some power in all of this, ya know? Like I'm cheating the system. The secret they don't tell you in school: cheaters win. :P
Mwa, oh yeah. Time to turn in my completely terri...I mean, my complete term paper!
[3:26pm]
More good news! After consulting with my school's social services person, we have outlined a plan that will enable me to have school insurance for the Fall and get a tuition refund! The downside to this is that I will be ineligible for any financial aid whatsoever for Fall 09. Still, things are looking good today!
On the school front: I talked to my professor, and got everything worked out. It was a bit scary because I half expected him to say, "Well, you might as well just drop the class..." But he worked with me, and outlined a pretty rigorous schedule (since next Tuesday will be my final day of class). Final Presentation: This Thursday. Final Paper: Next Tuesday. So at least I should be busy this next week!
Currently Eating: A giant heap of blackberry frozen yogurt.
Monday, August 4, 2008
[8-04-08] Procrastination.
[9:35pm]
I think perhaps this past week of chemo has stripped me of all rational thought. I'm tired, and I don't want to finish this dreadful term paper. I'm not going to school next semester. In fact, I'm barely going to school now. What am I moving toward? Where am I going? What will happen? What's the point? Lack of motivation? You bet.
But, the key is to not over think... not to dwell.
In the spoken word of an obscure downtempo EP:
"Keep on doing what you're doing... gotta keep moving."
"Keep on doing what you're doing... gotta keep moving."
"Keep on doing what you're doing... gotta keep moving."
Back to the paper.
[1:23am]
Stupid noisy neighbors... Grr... I miss my quiet hospital bed. Just for once, I'd like a sound night's of sleep.
I think perhaps this past week of chemo has stripped me of all rational thought. I'm tired, and I don't want to finish this dreadful term paper. I'm not going to school next semester. In fact, I'm barely going to school now. What am I moving toward? Where am I going? What will happen? What's the point? Lack of motivation? You bet.
But, the key is to not over think... not to dwell.
In the spoken word of an obscure downtempo EP:
"Keep on doing what you're doing... gotta keep moving."
"Keep on doing what you're doing... gotta keep moving."
"Keep on doing what you're doing... gotta keep moving."
Back to the paper.
[1:23am]
Stupid noisy neighbors... Grr... I miss my quiet hospital bed. Just for once, I'd like a sound night's of sleep.
[8-04-08] Insurance and School
[10:31am]
It is both dreadful and invigorating to be back on my feet again! There's all these challenges to be solved, appointments to schedule, hurtles to overcome...it's life! On the other hand, there's a ton of challenges with unknown solutions, appointments unscheduled, and all sorts of tedious hurtles...I just want to crawl back in bed.
*Ahem* Such is the way things are.
First on my agenda was to get my prescriptions. I got my handy-dandy bottle of ativan last night, and it has served me well. However, to get all the really expensive meds, I needed to go to the UC Berkeley pharmacy. (They classify chemotherapy related meds in a basically "unlimited" category, unlike my other insurances.) Unfortunately, they were all out of Zolfran and Emend -- my two strongest anti-emetics. I'll have to wait for tomorrow to get them. Hehe, the pharmacist knew me and why I needed the meds, and he looked a bit concerned: "I'll hold this prescription on stand-by, if things get worse, give me a call and at least you can be set up at another pharmacy out of pocket." This is one of those aforementioned challenges... no problem. I'll just have to use what I've got for the time being. :P
Next on the agenda, was to try to figure out the insurance dilemma. After talking to the UC Berkeley insurance rep, I was given the curt answer: "Sorry, you're out of luck. If you're not a UC Berkeley student, you get no insurance, and we don't have COBRA or anything." Bah.
After a quick talk with my DSP (Disabled Students Program) advisor, I learn that the solution is quite simple: Enroll in classes, and either drop right after the 5 week deadline, or withdraw on the last day of class. I believe both lets you keep financial aid, withdrawing on the last day may be safer. I have an appointment with my Social Services liaison tomorrow -- she knows how to work the system.
So, yay! I'm not screwed! Well, at least insurance-wise. Pulling these stunts does mean that I will not receive financial aid for my last semester at Cal. Hurdle: overcome (mostly).
Last in line, is to schedule my appointment with Dr. Wexler so that I may get more ICE! I need my fix within 10 days. Bah, no one there, appointments: not yet scheduled. [Revision: They will get back to me]
Well, 2 out of 3 ain't bad. Now to work on my term paper... ergh, gimme another ativan.
It is both dreadful and invigorating to be back on my feet again! There's all these challenges to be solved, appointments to schedule, hurtles to overcome...it's life! On the other hand, there's a ton of challenges with unknown solutions, appointments unscheduled, and all sorts of tedious hurtles...I just want to crawl back in bed.
*Ahem* Such is the way things are.
First on my agenda was to get my prescriptions. I got my handy-dandy bottle of ativan last night, and it has served me well. However, to get all the really expensive meds, I needed to go to the UC Berkeley pharmacy. (They classify chemotherapy related meds in a basically "unlimited" category, unlike my other insurances.) Unfortunately, they were all out of Zolfran and Emend -- my two strongest anti-emetics. I'll have to wait for tomorrow to get them. Hehe, the pharmacist knew me and why I needed the meds, and he looked a bit concerned: "I'll hold this prescription on stand-by, if things get worse, give me a call and at least you can be set up at another pharmacy out of pocket." This is one of those aforementioned challenges... no problem. I'll just have to use what I've got for the time being. :P
Next on the agenda, was to try to figure out the insurance dilemma. After talking to the UC Berkeley insurance rep, I was given the curt answer: "Sorry, you're out of luck. If you're not a UC Berkeley student, you get no insurance, and we don't have COBRA or anything." Bah.
After a quick talk with my DSP (Disabled Students Program) advisor, I learn that the solution is quite simple: Enroll in classes, and either drop right after the 5 week deadline, or withdraw on the last day of class. I believe both lets you keep financial aid, withdrawing on the last day may be safer. I have an appointment with my Social Services liaison tomorrow -- she knows how to work the system.
So, yay! I'm not screwed! Well, at least insurance-wise. Pulling these stunts does mean that I will not receive financial aid for my last semester at Cal. Hurdle: overcome (mostly).
Last in line, is to schedule my appointment with Dr. Wexler so that I may get more ICE! I need my fix within 10 days. Bah, no one there, appointments: not yet scheduled. [Revision: They will get back to me]
Well, 2 out of 3 ain't bad. Now to work on my term paper... ergh, gimme another ativan.
Sunday, August 3, 2008
[8-03-08] Home Sweet Home
[10:13pm]
It's good to be home. Next time, however, I'll show the foresight to clean before I go get ICE. I've got a full day of stuff to do tomorrow:
1> Work out withdrawal from UC Berkeley
2> Schedule Appointment. with DR. Wexler
3> Get all these prescriptions filled
4> Finish Term Paper before Tuesday.
5> Find out how to solve insurance dilemma (see 1)
By the way, I just got a hand made quilt from Liz's mom. It's totally beautiful, and totally thoughtful. When she was going through chemo, her best friend made her a quilt. Now I have one of my own, and it even sports rustic colors :P No more lame hospital blankets! Thanks so much!
Ok, back tzzzzzzzz.
[2:46am]
For the summer, due to all the students returning home, a lot of Irish, for some reason, like to move into the dorms and halls of UC Berkeley. Overnight it turns into some sort of party school, with people chanting Irish jigs in the streets. It was fun when I got the bad news, to drop everything and go partying with them. Now, I just want some sleep... and they keep waking me up
with belligerent noises. Bah.
Been thinking about my schedule... [Edited, thanks Liz!]
8-13 to 8-17 In-Patient Chemo
8-27 to 8-31 In-Patient Chemo * Optional
9-10 to 9-14 In-Patient Chemo * Optional
9-28 to 10-28 Stanford BMT Program
If we time it juuuust right, we can make it so that my re-birthday (day at which stem cells are returned) coincides actually with my actual birthday! As far as I know, one can expect 5-12 days before stem cells are returned. Factoring a slight delay before Stanford, and we're set! That'd be sweet! Then I could choose between, say, 2 candles on the cake, or 29.
It's good to be home. Next time, however, I'll show the foresight to clean before I go get ICE. I've got a full day of stuff to do tomorrow:
1> Work out withdrawal from UC Berkeley
2> Schedule Appointment. with DR. Wexler
3> Get all these prescriptions filled
4> Finish Term Paper before Tuesday.
5> Find out how to solve insurance dilemma (see 1)
By the way, I just got a hand made quilt from Liz's mom. It's totally beautiful, and totally thoughtful. When she was going through chemo, her best friend made her a quilt. Now I have one of my own, and it even sports rustic colors :P No more lame hospital blankets! Thanks so much!
Ok, back tzzzzzzzz.
[2:46am]
For the summer, due to all the students returning home, a lot of Irish, for some reason, like to move into the dorms and halls of UC Berkeley. Overnight it turns into some sort of party school, with people chanting Irish jigs in the streets. It was fun when I got the bad news, to drop everything and go partying with them. Now, I just want some sleep... and they keep waking me up
with belligerent noises. Bah.
Been thinking about my schedule... [Edited, thanks Liz!]
8-13 to 8-17 In-Patient Chemo
8-27 to 8-31 In-Patient Chemo * Optional
9-10 to 9-14 In-Patient Chemo * Optional
9-28 to 10-28 Stanford BMT Program
If we time it juuuust right, we can make it so that my re-birthday (day at which stem cells are returned) coincides actually with my actual birthday! As far as I know, one can expect 5-12 days before stem cells are returned. Factoring a slight delay before Stanford, and we're set! That'd be sweet! Then I could choose between, say, 2 candles on the cake, or 29.
[8-03-08] Discharge
[10:54am]
Today is freedom day -- back into the real world!
My doctor says she'll be around in the late afternoon, then I'll be released. Also, I told her about my plan to be back for more ICE in two weeks... She warned me about the difficulty, that the nadir (blood cells at lowest due to chemo) was about 14 days, but agreed to let me try. So, she's going to give me a shot of Neupogen before I get discharged -- going to give those white blood cells a boost!
I'm not necessarily looking forward to another ICE treatment, though. But, anyhow, this part should be over soon, and I really can't wait to get on with the treatment... despite anything. See the contradiction? Anyhow, two weeks is a heckova lot sooner than three. If you calculate it out, it means the difference between transplant in 2 months, or a transplant in 3 months.
[11:30am]
Well that was odd... This morning, while I was trying to reach into the closet without dislodging all those tubes, it felt like I sprained my back. Or more like a back cramp -- probably due to lying in bed too much. Anyhow, the nurse came by and said, as usual, "are you feeling any pain?"
"Well actually... a bit", I said and told her about it.
I told her that I'm sure it would go away. But nevertheless, she kept coming back every 10 minutes or to see if it got any better. It didn't, so she went and got me some tylenol. The pattern continued, and the next nurse basically talked me into getting something stronger... "No sense sitting here in pain," he said.
He came back with some morphine and anti-inflammatory. I guess they don't mess around here! Funny enough, the back still hurts. I'm just a bit more cheerful about it. :P
[12:00pm]
Hate to say it, but nausea's tough today.
Today is freedom day -- back into the real world!
My doctor says she'll be around in the late afternoon, then I'll be released. Also, I told her about my plan to be back for more ICE in two weeks... She warned me about the difficulty, that the nadir (blood cells at lowest due to chemo) was about 14 days, but agreed to let me try. So, she's going to give me a shot of Neupogen before I get discharged -- going to give those white blood cells a boost!
I'm not necessarily looking forward to another ICE treatment, though. But, anyhow, this part should be over soon, and I really can't wait to get on with the treatment... despite anything. See the contradiction? Anyhow, two weeks is a heckova lot sooner than three. If you calculate it out, it means the difference between transplant in 2 months, or a transplant in 3 months.
[11:30am]
Well that was odd... This morning, while I was trying to reach into the closet without dislodging all those tubes, it felt like I sprained my back. Or more like a back cramp -- probably due to lying in bed too much. Anyhow, the nurse came by and said, as usual, "are you feeling any pain?"
"Well actually... a bit", I said and told her about it.
I told her that I'm sure it would go away. But nevertheless, she kept coming back every 10 minutes or to see if it got any better. It didn't, so she went and got me some tylenol. The pattern continued, and the next nurse basically talked me into getting something stronger... "No sense sitting here in pain," he said.
He came back with some morphine and anti-inflammatory. I guess they don't mess around here! Funny enough, the back still hurts. I'm just a bit more cheerful about it. :P
[12:00pm]
Hate to say it, but nausea's tough today.
Saturday, August 2, 2008
[8-02-08] Routine
[12:41pm]
I've begun to adjust to the little patterns around this place, note the routine, and adapt to it.
0500 - 8 Hour Hyrdation Added to ICE
0600 - Weight taken, "Hold on, lemme get dressed."
0610 - Blood Drawn for Labwork
0620 - Vital Signs
0700 - New nurse introduces himself/herself
0800 - Breakfast! OM NOM NOM NOM
1100 - Bed made, room cleaned. Breakfast tray taken
1200 - Vitals
1300 - More hydration: chemo ETA: 2 hours
1310 - Lunch!
1500 - Premeds added: Emend, Zolfran, Ativan
1600 - Cisplatin Chemo (over 1 hour)
1745 - More Hydration: 2 hours
1810 - Mesna (Protects bladder from ifosfomide)
1850 - Ifosfomide (max dose)
1900 - Dinner?
2000 - Etoposide
2200 - Mesna
One would think that sleeping through all of this would be tough, especially for me -- who sleeps very lightly. I just wake up, do whatever's needed, then get back to sleep. Routine, routine, routine -- in a way I kinda like it.
Watching: Monty Python's Flying Circus
I've begun to adjust to the little patterns around this place, note the routine, and adapt to it.
0500 - 8 Hour Hyrdation Added to ICE
0600 - Weight taken, "Hold on, lemme get dressed."
0610 - Blood Drawn for Labwork
0620 - Vital Signs
0700 - New nurse introduces himself/herself
0800 - Breakfast! OM NOM NOM NOM
1100 - Bed made, room cleaned. Breakfast tray taken
1200 - Vitals
1300 - More hydration: chemo ETA: 2 hours
1310 - Lunch!
1500 - Premeds added: Emend, Zolfran, Ativan
1600 - Cisplatin Chemo (over 1 hour)
1745 - More Hydration: 2 hours
1810 - Mesna (Protects bladder from ifosfomide)
1850 - Ifosfomide (max dose)
1900 - Dinner?
2000 - Etoposide
2200 - Mesna
One would think that sleeping through all of this would be tough, especially for me -- who sleeps very lightly. I just wake up, do whatever's needed, then get back to sleep. Routine, routine, routine -- in a way I kinda like it.
Watching: Monty Python's Flying Circus
Friday, August 1, 2008
[8-01-08] Blood counts are in...
I'm anemic! Woo hoo!
It's classified as anything under 13g/DL for hemoglobin.
Normal Range for RBC: 4.7-6.1M/uL
Normal Range for Hemoglobin: 14-18G/DL
7/30: 14.2g/DL, RBC: 4.50M/uL
7/31: 13.7g/DL, RBC: 4.36M/uL
8/01: 12.4g/DL, RBC: 3.92M/uL
That's shooting down way faster than it did for Stanford V! Interesting.
As for my white blood counts, well, they're going up for some reason. I have no clue why, but also interesting. Maybe they drop in what's called the "nadir."
I know it's strange to look at these life numbers as a game, but it's fun to guess.
I mean, my white blood cells have continued to rise -- when will the rise turn south? The hemoglobin appears to be increasing the rate of reduction, but you also have to account for diminishing returns. Knowing that, what will it be tomorrow? My guess is 11.4g/DL, any takers? Fascinating.
It's classified as anything under 13g/DL for hemoglobin.
Normal Range for RBC: 4.7-6.1M/uL
Normal Range for Hemoglobin: 14-18G/DL
7/30: 14.2g/DL, RBC: 4.50M/uL
7/31: 13.7g/DL, RBC: 4.36M/uL
8/01: 12.4g/DL, RBC: 3.92M/uL
That's shooting down way faster than it did for Stanford V! Interesting.
As for my white blood counts, well, they're going up for some reason. I have no clue why, but also interesting. Maybe they drop in what's called the "nadir."
I know it's strange to look at these life numbers as a game, but it's fun to guess.
I mean, my white blood cells have continued to rise -- when will the rise turn south? The hemoglobin appears to be increasing the rate of reduction, but you also have to account for diminishing returns. Knowing that, what will it be tomorrow? My guess is 11.4g/DL, any takers? Fascinating.
[8-01-08] Bacon, Bacon, Cancer
[12;44pm]
Really tired this morning, so I slept a bunch. These hospital beds are great! On a normal mattress, I can get about 5 hours before my back starts hurting. On my special mattress, 7 hours. In here, 11 and a half hours!
So nausea doesn't appear to be an issue anymore. They started me on this drug called emend -- that stuff is bad-ass. With these anti-nausea meds, this chemo is a cake-walk... other than getting a bit tired now and then. Oh, and I found out the "super secret privilege" for those in the oncology ward: you can write whatever you want on the menu, and they'll try to make it! Awesome, huh? I hope they have hanging tenders and pepper jack sausages :P But I didn't want to push my luck, so I just ordered a bunch of bacon.
[6:00pm]
Yawn, just woke up again. Now am I just being lazy, or is it the chemo? I vote chemo, because then it isn't my fault! Other than that, it's been a pretty good day. They started the cisplatin about an hour ago, and no nausea yet! So I think adding the emend made a big difference.
I keep telling the nurses and whatnot about my term paper, and yet I haven't really worked on it. It's hard to care about stuff in that "other" world. This is my world now, a world of tubes and chemo, and repetitive (and extremely annoying) beeping sounds, a world of friendly nurses who not only give you the medicine, they give you some good company. Where does a term paper fit in to this world? In fighting for my life, of what importance is technical writing? Oh well, once I leave the hospital, I'm sure I'll be able to return to that world and finish the paper.
But there's a point to all this. When I was first diagnosed, I didn't want to be "cancer boy." I want to be "Austin, the lazy UC Berkeley student", or "Austin, the musician", or "Austin, the computer geek." But cancer? What an ugly thing: cancer. Cancer isn't attractive, or something to be proud of. And I certainly don't think I'm brave or courageous for doing something anyone in my situation would do. I don't want to identify with cancer. I want to be me. So, back then, I simply got chemo, went to school, and pretended everything was fine.
It worked, for the most part. And that was good, because school propelled me forward. It was a positive distraction, and something I could be proud of. But now, the game has changed a bit. Things have gotten more serious, and there's really no way to hide the fact that you have cancer when you're sitting in a hospital bed with tubes attached 24/7. As for school, my month in Stanford will make that impossible. Nope, no way to hide it. I am "cancer boy" now.
Even this blog will attest to that.
But there's an upside. I'm so amazed at the level of support I received from everyone -- it seems I'm loved. And this is a little vacation for me. I mean, I get fed three times a day, I get to slack on the internet all day, read the books Liz got for me, or watch the 1TB of movies Barbara downloaded for me, or work on my *ahem*midtermpaper. I can't be bored, and despite the situation, everything's pretty low-stress.
This whole thing has allowed me to step back and look at my life. Re-evaluate my priorities and whatnot. If I could do anything in the world, right now, what would I want to do? Where would I want to go? In addition, the lack of deadlines, or career ambition, or financial anxiety... all that's been funneled into a drive to beat this. Fighting cancer is swell meditation. It's probably healthy.
Really tired this morning, so I slept a bunch. These hospital beds are great! On a normal mattress, I can get about 5 hours before my back starts hurting. On my special mattress, 7 hours. In here, 11 and a half hours!
So nausea doesn't appear to be an issue anymore. They started me on this drug called emend -- that stuff is bad-ass. With these anti-nausea meds, this chemo is a cake-walk... other than getting a bit tired now and then. Oh, and I found out the "super secret privilege" for those in the oncology ward: you can write whatever you want on the menu, and they'll try to make it! Awesome, huh? I hope they have hanging tenders and pepper jack sausages :P But I didn't want to push my luck, so I just ordered a bunch of bacon.
[6:00pm]
Yawn, just woke up again. Now am I just being lazy, or is it the chemo? I vote chemo, because then it isn't my fault! Other than that, it's been a pretty good day. They started the cisplatin about an hour ago, and no nausea yet! So I think adding the emend made a big difference.
I keep telling the nurses and whatnot about my term paper, and yet I haven't really worked on it. It's hard to care about stuff in that "other" world. This is my world now, a world of tubes and chemo, and repetitive (and extremely annoying) beeping sounds, a world of friendly nurses who not only give you the medicine, they give you some good company. Where does a term paper fit in to this world? In fighting for my life, of what importance is technical writing? Oh well, once I leave the hospital, I'm sure I'll be able to return to that world and finish the paper.
But there's a point to all this. When I was first diagnosed, I didn't want to be "cancer boy." I want to be "Austin, the lazy UC Berkeley student", or "Austin, the musician", or "Austin, the computer geek." But cancer? What an ugly thing: cancer. Cancer isn't attractive, or something to be proud of. And I certainly don't think I'm brave or courageous for doing something anyone in my situation would do. I don't want to identify with cancer. I want to be me. So, back then, I simply got chemo, went to school, and pretended everything was fine.
It worked, for the most part. And that was good, because school propelled me forward. It was a positive distraction, and something I could be proud of. But now, the game has changed a bit. Things have gotten more serious, and there's really no way to hide the fact that you have cancer when you're sitting in a hospital bed with tubes attached 24/7. As for school, my month in Stanford will make that impossible. Nope, no way to hide it. I am "cancer boy" now.
Even this blog will attest to that.
But there's an upside. I'm so amazed at the level of support I received from everyone -- it seems I'm loved. And this is a little vacation for me. I mean, I get fed three times a day, I get to slack on the internet all day, read the books Liz got for me, or watch the 1TB of movies Barbara downloaded for me, or work on my *ahem*midtermpaper. I can't be bored, and despite the situation, everything's pretty low-stress.
This whole thing has allowed me to step back and look at my life. Re-evaluate my priorities and whatnot. If I could do anything in the world, right now, what would I want to do? Where would I want to go? In addition, the lack of deadlines, or career ambition, or financial anxiety... all that's been funneled into a drive to beat this. Fighting cancer is swell meditation. It's probably healthy.
Thursday, July 31, 2008
Barbara's Austin Report
We are a bit behind with the updates.
The meeting with Dr. Irwin went well. The meeting started with him saying "The Hodgkin's is still there." He apologized for the week delay, but elaborated on what happened that week, with the difficulties in getting Stanford to commit to a treatment bed.
We immediately (of course) threw the study by NorthWestern University at him (figuratively, not literally). He recognized the TLI method, to his credit. His comment was that other centers don't seem to be going to the TLI method, despite the high success rate, and left it to us to draw our own conclusions as to why. It was not until after the meeting that I realized that the study had only been published in 2007, and phase 3 of the trial was not done yet (in fact I do not know if it is even underway yet) so the method, if it ends up being adopted by others, is still brand new. But - this turns out to be a question to be answered by Stanford.
The overall plan is that Austin will immediately start a series of high dose chemo sessions, each about 4 days long. Each 4 day session he will be an inpatient at Alta Bates Summit Medical Center (not "Sutter" as Austin said earlier, though the hospital is part of Sutter Health Co.) Dr. Irwin reports that the chemo inpatient facilities are dedicated ones with long term nurses who have very extensive experience. On the other hand, Dr. Irwin is about to go on vacation. Two weeks. We were slightly disappointed with that. He has an associate ready to step in if needed, and a nurse Becky who seems to be an asset.
Each 4 day chemo session in the hospital will be followed by a recovery time at home of about 3 weeks, unless Austin is recovering faster than average, in which case it could be as little as 2 weeks. Austin prefers high intensity chemo at the fastest practical rate, an understandable view considering that the tumor began recovering from the Stanford V after only a few weeks.
There will be at least 2 sessions, followed by another scan to measure the size of the tumor mass. If after 2 sessions it is greatly reduced (fairly likely), or gone altogether (possible, not too likely but the best possible outcome) these chemo sessions will stop and he will transfer to Stanford for the Ultra-high-dose chemotherapy, followed by the hematopoietic stem cell transplant, and then the radiation, requiring several weeks of treatment including 4 weeks solid in the hospital. If the mass is moderately reduced after 2 sessions (likely) or slightly reduced (less likely) instead of going to Stanford he will have one or (probably) two more ICE chemo treatments, with the aim of getting the maximum physical reduction in size. If there is little reduction (possible but not too likely) or actual growth (quite unlikely, but the worst case) treatment may be reevaluated with a change in chemical agents, etc.
A lot depends on the meeting with the Stanford doctor on August 8th. We still have the option of taking the ICE treatments at Alta Bates Summit and then going directly to NWU for the integrated TLI/HSCT phase. It is Austin's and my belief that bulky tumor patients seem to do best when their radiation happens as early as possible in the HSCT treatment. Irwin is not certain of how Stanford will do this, but he implies that Stanford is not going to be too flexible in embracing treatment styles advocated by outside institutions. Is that because of bias or because their treatment is clearly superior? We will have to make that judgement once we have the facts.
Chemotherapy works by damaging cancer cells. When they try to fix themselves, the cancer cells can't do it (they are genetically abnormal) and they explode. The body's cells find the pieces of the exploded cells and get the scent, and not only go out to clean up the mess they left behind but they often kill some other nearby cells which smell the same.
It is like throwing meat at your enemy in the presence of hungry wolves. Your enemy is going to be in trouble! Hodgkin's disease has the blessing that its cells are quite vulnerable to a variety of chemo agents. Hodgkin's cells, if they are exposed to enough chemo, will die, without fail. The only variable is how much chemo the patient can tolerate. Austin's first treatment was at a fairly low level. His tumor did respond, but rather slowly. (Bulky tumors are thought to have an interior environment which adds a little shielding effect to the
tumor cells so they shrink slower.) He was on the borderline between a "PR" (partial remission, now usually called Partial Response) and a "SD" (stable disease, static disease, meaning that the disease shrank some or was stopped from growing.) He is now on the high dose chemo - it is reasonable to expect that his response will also be increased.
Reasonable, but again, not certain. After these ICE steps, his final chemo sessions will be ultra-high doses. These are the doses which are one of the miracles of modern medicine, because they can cure so many cancers - often even the killer disease Acute myeloid leukemia. They were once unusable because they would kill all the patients and it is no victory to cure the disease but have the patient not survive the treatment. But the hematopoietic stem cell transplant procedure restores the destroyed blood system and "rescues" the patient from the effects of the ultra-high dose chemo. There is no such rescue for the cancer cells, though, and therefore they stay dead. The patient receives a complete remission, gets consolidative radiation treatments to forestall any relapse, and goes home for a long recovery period, cured.
This is what we intend, hope, and expect for Austin.
The meeting with Dr. Irwin went well. The meeting started with him saying "The Hodgkin's is still there." He apologized for the week delay, but elaborated on what happened that week, with the difficulties in getting Stanford to commit to a treatment bed.
We immediately (of course) threw the study by NorthWestern University at him (figuratively, not literally). He recognized the TLI method, to his credit. His comment was that other centers don't seem to be going to the TLI method, despite the high success rate, and left it to us to draw our own conclusions as to why. It was not until after the meeting that I realized that the study had only been published in 2007, and phase 3 of the trial was not done yet (in fact I do not know if it is even underway yet) so the method, if it ends up being adopted by others, is still brand new. But - this turns out to be a question to be answered by Stanford.
The overall plan is that Austin will immediately start a series of high dose chemo sessions, each about 4 days long. Each 4 day session he will be an inpatient at Alta Bates Summit Medical Center (not "Sutter" as Austin said earlier, though the hospital is part of Sutter Health Co.) Dr. Irwin reports that the chemo inpatient facilities are dedicated ones with long term nurses who have very extensive experience. On the other hand, Dr. Irwin is about to go on vacation. Two weeks. We were slightly disappointed with that. He has an associate ready to step in if needed, and a nurse Becky who seems to be an asset.
Each 4 day chemo session in the hospital will be followed by a recovery time at home of about 3 weeks, unless Austin is recovering faster than average, in which case it could be as little as 2 weeks. Austin prefers high intensity chemo at the fastest practical rate, an understandable view considering that the tumor began recovering from the Stanford V after only a few weeks.
There will be at least 2 sessions, followed by another scan to measure the size of the tumor mass. If after 2 sessions it is greatly reduced (fairly likely), or gone altogether (possible, not too likely but the best possible outcome) these chemo sessions will stop and he will transfer to Stanford for the Ultra-high-dose chemotherapy, followed by the hematopoietic stem cell transplant, and then the radiation, requiring several weeks of treatment including 4 weeks solid in the hospital. If the mass is moderately reduced after 2 sessions (likely) or slightly reduced (less likely) instead of going to Stanford he will have one or (probably) two more ICE chemo treatments, with the aim of getting the maximum physical reduction in size. If there is little reduction (possible but not too likely) or actual growth (quite unlikely, but the worst case) treatment may be reevaluated with a change in chemical agents, etc.
A lot depends on the meeting with the Stanford doctor on August 8th. We still have the option of taking the ICE treatments at Alta Bates Summit and then going directly to NWU for the integrated TLI/HSCT phase. It is Austin's and my belief that bulky tumor patients seem to do best when their radiation happens as early as possible in the HSCT treatment. Irwin is not certain of how Stanford will do this, but he implies that Stanford is not going to be too flexible in embracing treatment styles advocated by outside institutions. Is that because of bias or because their treatment is clearly superior? We will have to make that judgement once we have the facts.
Chemotherapy works by damaging cancer cells. When they try to fix themselves, the cancer cells can't do it (they are genetically abnormal) and they explode. The body's cells find the pieces of the exploded cells and get the scent, and not only go out to clean up the mess they left behind but they often kill some other nearby cells which smell the same.
It is like throwing meat at your enemy in the presence of hungry wolves. Your enemy is going to be in trouble! Hodgkin's disease has the blessing that its cells are quite vulnerable to a variety of chemo agents. Hodgkin's cells, if they are exposed to enough chemo, will die, without fail. The only variable is how much chemo the patient can tolerate. Austin's first treatment was at a fairly low level. His tumor did respond, but rather slowly. (Bulky tumors are thought to have an interior environment which adds a little shielding effect to the
tumor cells so they shrink slower.) He was on the borderline between a "PR" (partial remission, now usually called Partial Response) and a "SD" (stable disease, static disease, meaning that the disease shrank some or was stopped from growing.) He is now on the high dose chemo - it is reasonable to expect that his response will also be increased.
Reasonable, but again, not certain. After these ICE steps, his final chemo sessions will be ultra-high doses. These are the doses which are one of the miracles of modern medicine, because they can cure so many cancers - often even the killer disease Acute myeloid leukemia. They were once unusable because they would kill all the patients and it is no victory to cure the disease but have the patient not survive the treatment. But the hematopoietic stem cell transplant procedure restores the destroyed blood system and "rescues" the patient from the effects of the ultra-high dose chemo. There is no such rescue for the cancer cells, though, and therefore they stay dead. The patient receives a complete remission, gets consolidative radiation treatments to forestall any relapse, and goes home for a long recovery period, cured.
This is what we intend, hope, and expect for Austin.
[7-31-08] Evening Report
[7:29am]
My Liz just came over and kept me company. What a wonderful person she is (true, the McDonalds helped :P). Anyhow, I'm just constantly amazed with all the support I've received from you all -- it really makes me feel that I'm loved and not alone. So here's to you all!
I'm just about to start the second part of my chemo. Hopefully, this'll go better than the first. Now that the nausea is gone, I just find myself sleepy -- maybe a side effect of anti-nausea meds? Or because my red blood count is below nominal?
You know, in retrospect, the chaplain visiting kind of spooked me a bit. I mean, if you break your leg in the hospital, do you get a chaplain? They are there to address the "spiritual needs" of the patients. If you're obviously going to live, you aren't in a spiritual crisis. So, why do I get a chaplain? Spooky.
[Watching: Hancock]
My Liz just came over and kept me company. What a wonderful person she is (true, the McDonalds helped :P). Anyhow, I'm just constantly amazed with all the support I've received from you all -- it really makes me feel that I'm loved and not alone. So here's to you all!
I'm just about to start the second part of my chemo. Hopefully, this'll go better than the first. Now that the nausea is gone, I just find myself sleepy -- maybe a side effect of anti-nausea meds? Or because my red blood count is below nominal?
You know, in retrospect, the chaplain visiting kind of spooked me a bit. I mean, if you break your leg in the hospital, do you get a chaplain? They are there to address the "spiritual needs" of the patients. If you're obviously going to live, you aren't in a spiritual crisis. So, why do I get a chaplain? Spooky.
[Watching: Hancock]
[7-31-08] Delusional Optimism
[3:54am]
I'd like to demonstrate a little known strategy known as "Delusional Optimism." That, combined with several other, uh, peculiar aspects of my personality enable an unprecedented amount of satisfaction from the most terrible of things... and the more crazy you are, the better it works.
For example, consider a patient who just experienced some nausea due to the first day of treatment on a new chemotherapy regimen. A sane person might say, "this sucks." Rightly so. A delusional optimist, however, will be pleased because he feels that the chemotherapy is "working well" if he notices unpleasant side effects (delusional), even if countless literature indicates that this absolutely not true . The optimist then kicks in, and because of the delusion, begins to feel that "everything will turn out ok" because of all this. It's a very effective way stroll through many of life's difficulties -- I'm thinking of Bullwinkle's famed innocent ignorance, here (which is a similar, albeit different strategy).
Ok, we now return to your regularly scheduled program...
Woohoo, I'm feeling some nausea!!
I just had some ativan to combat the nausea, and it will help me combat this darn insomnia. I've only had three hours sleep: I keep having nightmares where I read a study which clearly indicates that the doses and scheduling of my ICE treatment were clearly ineffectual. Doctors are unavailable on the phone or email, nurses insist on continuing with set treatment... stuff like that.
[8:00am]
Just got my CT scan. They left me in a waiting room for a bit, so I had time to practice my freestyle wheelchair moves. It takes a lot of effort to move one of those around! If I didn't have the ICE-machine on the back, I would have tried some wheelies.
I had to drink this odd contrast material so that the CT machine could see my organs and whatnot, then the proceed to inject me with the IV dye -- my favorite part! Toasty :P
I know I'm not supposed to shower with an accessed port, but to hell with that! That's gross! I'm trying to smuggle some soap from the hand cleaner, and use a spare blanket for a towel :P
[3:10]
Just started chemo again, and at terrible timing. I took a nap around 2:00pm; well, when I seem to wake up, I have some moderate nausea. The key is to move as little as possible when you call for the nurse. Strange how, nausea with the Stanford V was way more mild and way more predictable. This type disappears, ebbs and flows, or goes from mild to something tougher if you make the wrong movement. But I'm confident the anti-nausea meds will do the trick: Ativan Zolfran, and the killer Emmend. I think they've just been giving me ativan until now.
Anyhow, bad timing I think. Nausea so close to *more* chemo, and just as I'm recovering, the chaplain walks in. I'm prepared for all sorts of religious stuff, but he just calmly professes "spiritual comfort" when I state my, uh, "nondenominational and individualistic spiritualism." I tell him that I basically do not want to "go there" at this point, maybe if things get more pessimistic, but I invite him to sit down and have a chat about anything in particular (For some reason, I'm starving for conversation around here. My nurse Alicia is a gem). So, I basically talk about my past and my current situation... from diagnosis to where I'll be in a few months. Nice guy. If only chaplains were ministers, we'd have way more mello religion.
[4:29pm]
Barbara's coming, and I think Liz too! Yay, a visit! I didn't realize how social I'd find myself in here.
I'd like to demonstrate a little known strategy known as "Delusional Optimism." That, combined with several other, uh, peculiar aspects of my personality enable an unprecedented amount of satisfaction from the most terrible of things... and the more crazy you are, the better it works.
For example, consider a patient who just experienced some nausea due to the first day of treatment on a new chemotherapy regimen. A sane person might say, "this sucks." Rightly so. A delusional optimist, however, will be pleased because he feels that the chemotherapy is "working well" if he notices unpleasant side effects (delusional), even if countless literature indicates that this absolutely not true . The optimist then kicks in, and because of the delusion, begins to feel that "everything will turn out ok" because of all this. It's a very effective way stroll through many of life's difficulties -- I'm thinking of Bullwinkle's famed innocent ignorance, here (which is a similar, albeit different strategy).
Ok, we now return to your regularly scheduled program...
Woohoo, I'm feeling some nausea!!
I just had some ativan to combat the nausea, and it will help me combat this darn insomnia. I've only had three hours sleep: I keep having nightmares where I read a study which clearly indicates that the doses and scheduling of my ICE treatment were clearly ineffectual. Doctors are unavailable on the phone or email, nurses insist on continuing with set treatment... stuff like that.
[8:00am]
Just got my CT scan. They left me in a waiting room for a bit, so I had time to practice my freestyle wheelchair moves. It takes a lot of effort to move one of those around! If I didn't have the ICE-machine on the back, I would have tried some wheelies.
I had to drink this odd contrast material so that the CT machine could see my organs and whatnot, then the proceed to inject me with the IV dye -- my favorite part! Toasty :P
I know I'm not supposed to shower with an accessed port, but to hell with that! That's gross! I'm trying to smuggle some soap from the hand cleaner, and use a spare blanket for a towel :P
[3:10]
Just started chemo again, and at terrible timing. I took a nap around 2:00pm; well, when I seem to wake up, I have some moderate nausea. The key is to move as little as possible when you call for the nurse. Strange how, nausea with the Stanford V was way more mild and way more predictable. This type disappears, ebbs and flows, or goes from mild to something tougher if you make the wrong movement. But I'm confident the anti-nausea meds will do the trick: Ativan Zolfran, and the killer Emmend. I think they've just been giving me ativan until now.
Anyhow, bad timing I think. Nausea so close to *more* chemo, and just as I'm recovering, the chaplain walks in. I'm prepared for all sorts of religious stuff, but he just calmly professes "spiritual comfort" when I state my, uh, "nondenominational and individualistic spiritualism." I tell him that I basically do not want to "go there" at this point, maybe if things get more pessimistic, but I invite him to sit down and have a chat about anything in particular (For some reason, I'm starving for conversation around here. My nurse Alicia is a gem). So, I basically talk about my past and my current situation... from diagnosis to where I'll be in a few months. Nice guy. If only chaplains were ministers, we'd have way more mello religion.
[4:29pm]
Barbara's coming, and I think Liz too! Yay, a visit! I didn't realize how social I'd find myself in here.
Wednesday, July 30, 2008
[7-30-08] Evening Report
[11:36pm]
I just finished the chemo and whatnot -- this'll be a piece of cake. No nausea yet; just the familiar "I just had chemo" sensation. It could be the placebo effect, but it feels more like my body *should* be feeling bad, but I've been given great meds to combat that. Kinda like pouring a glass of hot water into a glass of cold water: the two cancel out, but the glass itself remains oddly cold for a short period of time.
The bad news is that I am not getting the maximum dose of ifosfamide (of the mustard family). My order says "maximum dose" of 1000mg/m2. Calculating my surface area, my nurse tells me that I am 2.2m2. This means that I should get a dose of 2200mg; my actual dose is 1750mg. From what I gather, my large size translates into a dose of ifosfamide that is well over safe limits in a short period of time (4 days). Accordingly, my doctor lowered that dose so that I will receive 7000mg in four days. Still, I like large doses of chemo.
On a related topic, I've been drinking massive amounts of water. The frequency of bladder problems is quite common on this drug, so I'm doing the "better safe than sorry" approach.
I just finished the chemo and whatnot -- this'll be a piece of cake. No nausea yet; just the familiar "I just had chemo" sensation. It could be the placebo effect, but it feels more like my body *should* be feeling bad, but I've been given great meds to combat that. Kinda like pouring a glass of hot water into a glass of cold water: the two cancel out, but the glass itself remains oddly cold for a short period of time.
The bad news is that I am not getting the maximum dose of ifosfamide (of the mustard family). My order says "maximum dose" of 1000mg/m2. Calculating my surface area, my nurse tells me that I am 2.2m2. This means that I should get a dose of 2200mg; my actual dose is 1750mg. From what I gather, my large size translates into a dose of ifosfamide that is well over safe limits in a short period of time (4 days). Accordingly, my doctor lowered that dose so that I will receive 7000mg in four days. Still, I like large doses of chemo.
On a related topic, I've been drinking massive amounts of water. The frequency of bladder problems is quite common on this drug, so I'm doing the "better safe than sorry" approach.
[7-30-08] ICE, ICE, Baby!
I still need to outline the current plan.
There will be 2 to 4 cycles of ICE treatment, each time requiring 4 days of hospitalization. Based on how I handle the first cycle, the interval between cycles will be determined: 2 weeks, or 3 weeks. After two cycles, my progress will be determined with a pet-CT scan. If scans are clean, then I will start the BMT at Stanford. Otherwise (provided that there is at least some progress), ICE treatment will continue for 2 more cycles. When it is time for the Stanford BMT, I'll be in-patient for about a month (due to whopping dose of chemo and no white blood cells). Then I'm cured, and I can proceed to celebrate.
[1:02pm]
Today is Christmas. In that I was really looking forward to getting started, and moving forward. I mean, this is basically the first day of my new life, you know? How things go today will indicate how things will be for the next few months. That's a pretty big deal.
Will I handle the chemo well? Will I have a good time in the hospital? Will it be like a little vacation? I wonder all of these things. Today, I will be able to add the first data point. From that, I can begin to extrapolate all sorts of crazy predictions... but, before I can do that, I need at lease one data point. That is today.
So far, it's been pretty anti-climactic. In a way, I expected all sorts of rush and activity when I arrived, but it quickly got pretty calm.
Ooh, the ICE-machine is here..
[4:42pm]
Just got through with the MUGA (pronounced: "muh-ga") scan. Apparently, they need to make sure my heart can handle the chemo. It's pretty much the same as the MRI, CT scan, and pet-CT scan, in that you enter some white tunnel-type thing and hold your arms over your head until they turn blue. The machine here at Sutter is way cooler than any I have seen -- there's this beautiful back-lit photograph of several cherry blossom trees in bloom. Very nice.
I have a CT scan and some sort of lung test remaining. However, the doctor told me that we are proceeding with chemo despite the fact that I still have tests remaining -- better to not delay the scheduled chemo. Right now I'm on IV hydration in preparation for the chemo. Apparently, I need to have lots of fluids for ICE: there's the threat of hemorrhagic cystitis with symptoms mimicking that of a urinary tract infection. Bleeing Pud. Eww
Anyhow, ifosfamide ETA: 2 hours. I missed chemo :P
[6:00pm]
Yahoooo! I'm SO hungry, but Liz is coming with TACO BELL!!! I am so stoked right now. Mmmmmm fooooood. It is christmas!
There will be 2 to 4 cycles of ICE treatment, each time requiring 4 days of hospitalization. Based on how I handle the first cycle, the interval between cycles will be determined: 2 weeks, or 3 weeks. After two cycles, my progress will be determined with a pet-CT scan. If scans are clean, then I will start the BMT at Stanford. Otherwise (provided that there is at least some progress), ICE treatment will continue for 2 more cycles. When it is time for the Stanford BMT, I'll be in-patient for about a month (due to whopping dose of chemo and no white blood cells). Then I'm cured, and I can proceed to celebrate.
[1:02pm]
Today is Christmas. In that I was really looking forward to getting started, and moving forward. I mean, this is basically the first day of my new life, you know? How things go today will indicate how things will be for the next few months. That's a pretty big deal.
Will I handle the chemo well? Will I have a good time in the hospital? Will it be like a little vacation? I wonder all of these things. Today, I will be able to add the first data point. From that, I can begin to extrapolate all sorts of crazy predictions... but, before I can do that, I need at lease one data point. That is today.
So far, it's been pretty anti-climactic. In a way, I expected all sorts of rush and activity when I arrived, but it quickly got pretty calm.
Ooh, the ICE-machine is here..
[4:42pm]
Just got through with the MUGA (pronounced: "muh-ga") scan. Apparently, they need to make sure my heart can handle the chemo. It's pretty much the same as the MRI, CT scan, and pet-CT scan, in that you enter some white tunnel-type thing and hold your arms over your head until they turn blue. The machine here at Sutter is way cooler than any I have seen -- there's this beautiful back-lit photograph of several cherry blossom trees in bloom. Very nice.
I have a CT scan and some sort of lung test remaining. However, the doctor told me that we are proceeding with chemo despite the fact that I still have tests remaining -- better to not delay the scheduled chemo. Right now I'm on IV hydration in preparation for the chemo. Apparently, I need to have lots of fluids for ICE: there's the threat of hemorrhagic cystitis with symptoms mimicking that of a urinary tract infection. Bleeing Pud. Eww
Anyhow, ifosfamide ETA: 2 hours. I missed chemo :P
[6:00pm]
Yahoooo! I'm SO hungry, but Liz is coming with TACO BELL!!! I am so stoked right now. Mmmmmm fooooood. It is christmas!
Tuesday, July 29, 2008
[7-29-08] The Big Plan
[8:51am]
Today is the big day! To say I am anxious is a bit of an understatement. I mean, I find out the big plan today. Will I be able to continue school? How long will I be hospitalized? How long will the treatment last? Is it a harsh treatment? Can I get total-lymphoid irradiation? Pretty pleeeeeeze? All will be answered.
Which is also why my Liz and my family is going to be there. They've prepared some pretty difficult questions, and I'm under the impression that if they are not answered properly, Barbara will ship me off to Chicago. Northwestern University has pretty good experience for people in exactly my situation: non-advanced bulky Hodgkin's with primary induction failure and no previous radiation. Believe it or not, the fact that I have not had any radiation before gives me a huge statistical bump. 83% event-free survival rate! Isn't that grea... wait... How can I be happy with that? True, those are the best odds I've heard for those in my camp. But, those are worse odds than playing Russian roulette with a 6-shooter.
Oh well, when life gives you lemons, you should go to Northwestern and be happy with the odds you're given.
[5:00pm]
Ok, the master plan is in. I think it is a good one and Stanford may work out fine. Ok, everyone is back at the hotel. I'm gonna write more later -- right now is time to drink and have fun.
Today is the big day! To say I am anxious is a bit of an understatement. I mean, I find out the big plan today. Will I be able to continue school? How long will I be hospitalized? How long will the treatment last? Is it a harsh treatment? Can I get total-lymphoid irradiation? Pretty pleeeeeeze? All will be answered.
Which is also why my Liz and my family is going to be there. They've prepared some pretty difficult questions, and I'm under the impression that if they are not answered properly, Barbara will ship me off to Chicago. Northwestern University has pretty good experience for people in exactly my situation: non-advanced bulky Hodgkin's with primary induction failure and no previous radiation. Believe it or not, the fact that I have not had any radiation before gives me a huge statistical bump. 83% event-free survival rate! Isn't that grea... wait... How can I be happy with that? True, those are the best odds I've heard for those in my camp. But, those are worse odds than playing Russian roulette with a 6-shooter.
Oh well, when life gives you lemons, you should go to Northwestern and be happy with the odds you're given.
[5:00pm]
Ok, the master plan is in. I think it is a good one and Stanford may work out fine. Ok, everyone is back at the hotel. I'm gonna write more later -- right now is time to drink and have fun.
Monday, June 2, 2008
[6-2-08] Completed Chemotherapy
It has been quite some time since my last entry. Overall, things have gone much better than I anticipated. I have completed chemotherapy as of 5-30-08. There was a little nausea, numbness in my fingers, and a myriad of little side effects. But I was OK overall. I start radiation sometime soon.
I managed to make it through all of my classes. Or, specifically, my AI class. I got a B-; not too bad, considering.
Now I look back through these pages to realize that I may have lost a little of my "survivor's optimism." I need to have gained something from this experience. Something must set everything straight.
I managed to make it through all of my classes. Or, specifically, my AI class. I got a B-; not too bad, considering.
Now I look back through these pages to realize that I may have lost a little of my "survivor's optimism." I need to have gained something from this experience. Something must set everything straight.
Friday, February 15, 2008
[2-15-08] Orchid's Flower
A few days after I was first diagnosed, I bought an orchid. I vowed to take care of the plant like it was my own life. The flower died a few days ago...
I tried everything. I ran to the florist, and asked for advice. He told me exactly how much they liked to be watered, and that they liked to be misted in the mornings. I bought a spray bottle and went to it...
A few days later, the flower still wasn't looking healthy. I told him about this, and he mentioned that my apartment may not be getting enough air circulation. Desperate, I went to Wallgreen's and bought three fans. I opened my windows and let all three fans continually circulate the air in my small room. Leaving my windows open meant cold nights and random noises on the busy street waking me up several times a night. But the orchid had to live.
I hope this is not a prophecy.
Fortunately, the plant part is still alive. I wonder...when it flowers again next year, will it mark the cure of my cancer? Probably, I'll be cured before then...or, perhaps the orchid will flower early?
Valentine's day was awesome. Liz was great. Carpe diem!
I tried everything. I ran to the florist, and asked for advice. He told me exactly how much they liked to be watered, and that they liked to be misted in the mornings. I bought a spray bottle and went to it...
A few days later, the flower still wasn't looking healthy. I told him about this, and he mentioned that my apartment may not be getting enough air circulation. Desperate, I went to Wallgreen's and bought three fans. I opened my windows and let all three fans continually circulate the air in my small room. Leaving my windows open meant cold nights and random noises on the busy street waking me up several times a night. But the orchid had to live.
I hope this is not a prophecy.
Fortunately, the plant part is still alive. I wonder...when it flowers again next year, will it mark the cure of my cancer? Probably, I'll be cured before then...or, perhaps the orchid will flower early?
Valentine's day was awesome. Liz was great. Carpe diem!
Thursday, February 14, 2008
[2-14-08] Valentine's Day!
I have a date for Valentine's day! Woot! Things might work out for me and this girl. So, I was thinking about chemotherapy and my hair...
I called this hair replacement studio and they told me all about their products. Actually, they said that it was rare for men to come in because they were more comfortable with hair-loss.
Then the lady mentioned that hair-loss due to chemo is a "badge of courage" of some kind. I don't know how I feel about that. On one hand, getting a wig shows that you have the resolve to not "let cancer win" by allowing it to interfere in your day-to-day life. On the other hand, sporting your baldness says "I have cancer, do you have a problem with that?"
I called this hair replacement studio and they told me all about their products. Actually, they said that it was rare for men to come in because they were more comfortable with hair-loss.
Then the lady mentioned that hair-loss due to chemo is a "badge of courage" of some kind. I don't know how I feel about that. On one hand, getting a wig shows that you have the resolve to not "let cancer win" by allowing it to interfere in your day-to-day life. On the other hand, sporting your baldness says "I have cancer, do you have a problem with that?"
Friday, February 8, 2008
[2-8-08] Dr. House
So, I'm celebrating my Friday by binge-watching episodes of Dr. House and drinking sangria. Nothing like coming to terms with your illness by commiserating with those about to be saved by a brilliant doctor.
Anyhow, this kid on the show is getting a bone marrow biopsy. Sound familiar? Oh yeah, I got one of those. Dr. House says, "Oh yeah, this is going to hurt." The kid clenches in pain and lets out a scream. I think to myself: heh, I didn't scream. I'm bad-ass :P (Better living through delusion, I say)
Anyhow, this kid on the show is getting a bone marrow biopsy. Sound familiar? Oh yeah, I got one of those. Dr. House says, "Oh yeah, this is going to hurt." The kid clenches in pain and lets out a scream. I think to myself: heh, I didn't scream. I'm bad-ass :P (Better living through delusion, I say)
Wednesday, February 6, 2008
[2-6-08] Muga Scan
[7:20am]
Here I am at the hospital for the "Muga Scan." It's in the department of "Nuclear Medicine." That sounds so cool.
My guess is that they inject me with some sort of radioactive dye, which gives the scanning machines a real-time view of my heart in action.
[8:50am]
Sheesh! Long wait! When I approached the office, the lights were off. Odd, my appointment was scheduled for 8:00am. ... ... Eventually I got in.
Yep, it's a "radio-isotope." The technician made sure to point this out, and reminded me to drink a lot of water so that my "gonads remain intact." Apparently, these diagnostic machines like to foster a very intimate relationship with my 'nads.
Here I am at the hospital for the "Muga Scan." It's in the department of "Nuclear Medicine." That sounds so cool.
My guess is that they inject me with some sort of radioactive dye, which gives the scanning machines a real-time view of my heart in action.
[8:50am]
Sheesh! Long wait! When I approached the office, the lights were off. Odd, my appointment was scheduled for 8:00am.
Yep, it's a "radio-isotope." The technician made sure to point this out, and reminded me to drink a lot of water so that my "gonads remain intact." Apparently, these diagnostic machines like to foster a very intimate relationship with my 'nads.
Tuesday, February 5, 2008
[2-5-08] Santa Cruz
I went to Santa Cruz a couple of days ago -- we lived it up! It took a couple-few-twelve beers to tell my family, but the news was broken. There was distress -- I felt bad. However, there was much comfort, and I felt immeasurably better. Needless to say, I continued to get drunk.
[11:30am]
I just got the bone marrow biopsy done. They extracted a bone sample and marrow from my hip. It felt weird, like a shock down my legs. It wasn't as bad as I thought it would be, but it still totally sucked.
[8:40pm]
You know, I did some research today. It seems that my symptoms indicate either Hodgkin's (which has a great cure rate), or non-Hodgkin's (which has a 50-70% cure rate). That's pretty good, you know? I'm not doomed.
Mom said non-Hodgkin's was incurable... pa-shaw! I was talking with my family about having a Hodgkin's party if that was the diagnosis... strange as it seems.
[11:30am]
I just got the bone marrow biopsy done. They extracted a bone sample and marrow from my hip. It felt weird, like a shock down my legs. It wasn't as bad as I thought it would be, but it still totally sucked.
[8:40pm]
You know, I did some research today. It seems that my symptoms indicate either Hodgkin's (which has a great cure rate), or non-Hodgkin's (which has a 50-70% cure rate). That's pretty good, you know? I'm not doomed.
Mom said non-Hodgkin's was incurable... pa-shaw! I was talking with my family about having a Hodgkin's party if that was the diagnosis... strange as it seems.
Friday, February 1, 2008
[2-1-08] Graphics vs. AI
I failed to complete my graphics programming homework. I just couldn't concentrate/care about the ugly math. The programming assignment was fun, though -- I finished that.
I saw Lisa, from the school's Social Services dept., today. Nice lady. I told her the same old story & how it would be difficult to tell my family and whatnot.
Then she told me about how I can get an extra loan for $2,800 for medical expenses. Also, that I should get the DSP (Disabled Students Program) to help me out.
[11:00am]
I went to my first AI discussion section. The TA did an example of Bayesian Maps. The sample problem was, "find the probability of certain symptoms given that the patient has cancer, and vice versa." I felt a little upset about that. At that moment, I wonder how he would react if I blurted out my situation in front of the class...
Maybe I should drop the graphics class.
I saw Lisa, from the school's Social Services dept., today. Nice lady. I told her the same old story & how it would be difficult to tell my family and whatnot.
Then she told me about how I can get an extra loan for $2,800 for medical expenses. Also, that I should get the DSP (Disabled Students Program) to help me out.
[11:00am]
I went to my first AI discussion section. The TA did an example of Bayesian Maps. The sample problem was, "find the probability of certain symptoms given that the patient has cancer, and vice versa." I felt a little upset about that. At that moment, I wonder how he would react if I blurted out my situation in front of the class...
Maybe I should drop the graphics class.
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