[3:09pm]
I just cleaned my room and fully set-up my workspace. In other words, as of now, I am fully moved in. It always takes longer the first time... a lot of asking "where should I put this?" The next time, everything has its place and the cleaning goes a lot quicker. So I think it's a milestone of sorts... and I've been putting it off since I moved in.
Also, in the digital realm, I formatted my computer's system drive today. After a year or so, my computer gets quite... disorganized. I find that wiping the system drive and reinstalling the applications I use is the quickest way to get re-organized.
And I want to get organized. I want to get to work! I want to produce! The first step... is creating a clean workspace. Another milestone of sorts.
This all is a manifestation of my desire to return to the real world. Time to go from escapist gamer to student (more casual gamer). Time to get ready for college, graduation, and apply myself for success in the real world... again. Time to put cancer in the background.
Of course, there are times where the cancer/treatment is unavoidably in the foreground... like when my radiation treatments start in a few months. But, until then, I am allowed certain some freedom in not having an appointment every other day. So, I think I'll use this downtime as an opportunity to give my mind a break and spend less time thinking about the cancer.
It's a change of mental posture. Time for a relaxed stance.
This includes my blog, of course. I'm not really thinking about it as much, and I certainly don't want to try to think about the cancer... that's like dwelling on it. So, I'll just say less... that is, unless there is an event/appointment or something that gives me something to talk about.
Accordingly, I'm going to reduce my posts to every Monday until my radiation treatments start. Of course, I'll also post as soon as I can if there's any news or events.
That being said... see ya next week for my (supposedly) last Stanford appointment!
Showing posts with label philosophy. Show all posts
Showing posts with label philosophy. Show all posts
Monday, December 8, 2008
Friday, December 5, 2008
[12-05-08] Michigan
[7:26pm]
During the many hours of wait on the day of my Monday appointment, I had a lot of time to talk with my grandmother. I recall her asking on various subjects: "Are you allowed to ...," or "Can you ...," or "Will you be able to ..."
I remember defiantly answering "yes" to all of those questions. At first, she would give me a perplexed look and I would have to clarify: "Yes I can do that, but the doctors say that it is not allowed." And again, "Certainly, but it is not recommended."
Soon, she was rephrasing all of her questions. No longer was my freedom in question... instead, it was my choices or the doctor's recommendations that was in question. It was a good feeling.
Even if you're not being defiant, just changing your perspective can mean a world of difference. Say you technically have fourteen days remaining before you are supposed to go outside without your mask. There's a world of difference between "I can't go outside without my mask" and "I have chosen not to go outside without my mask." The latter implies freedom.
If you still have your freedom, then that's one less thing the cancer has taken away.
As you may recall, I was told not to fly to Michigan for Christmas holiday. I wasn't given a recommendation, I was told not to fly. Well, I want to go. In addition, I don't think it's a stupid decision. If I do get sick, I'm sure I'll pull through fine... it may just be a bit more prolonged and annoying that others may experience. Flying may slightly increase risk of medical trouble, but isn't that life? And I feel like living! Whether that be from living like a normal human or by taking chances...
"Get busy living, or get busy dying."
On a side note, I had a Snickers today... it was the first food post-BMT that tasted 100% as good as I remember it! Woohoo!
During the many hours of wait on the day of my Monday appointment, I had a lot of time to talk with my grandmother. I recall her asking on various subjects: "Are you allowed to ...," or "Can you ...," or "Will you be able to ..."
I remember defiantly answering "yes" to all of those questions. At first, she would give me a perplexed look and I would have to clarify: "Yes I can do that, but the doctors say that it is not allowed." And again, "Certainly, but it is not recommended."
Soon, she was rephrasing all of her questions. No longer was my freedom in question... instead, it was my choices or the doctor's recommendations that was in question. It was a good feeling.
Even if you're not being defiant, just changing your perspective can mean a world of difference. Say you technically have fourteen days remaining before you are supposed to go outside without your mask. There's a world of difference between "I can't go outside without my mask" and "I have chosen not to go outside without my mask." The latter implies freedom.
If you still have your freedom, then that's one less thing the cancer has taken away.
As you may recall, I was told not to fly to Michigan for Christmas holiday. I wasn't given a recommendation, I was told not to fly. Well, I want to go. In addition, I don't think it's a stupid decision. If I do get sick, I'm sure I'll pull through fine... it may just be a bit more prolonged and annoying that others may experience. Flying may slightly increase risk of medical trouble, but isn't that life? And I feel like living! Whether that be from living like a normal human or by taking chances...
"Get busy living, or get busy dying."
On a side note, I had a Snickers today... it was the first food post-BMT that tasted 100% as good as I remember it! Woohoo!
Saturday, November 29, 2008
[11-29-08] Any Aces?
[10:30pm]
In two days I will return to Stanford for a follow-up appointment. I will arrive at 1pm, get my labs and x-rays, and wait until 3pm for my clinic appointment. It feels like a "return" of some sort... like I've been on a vacation from all this cancer stuff lately. I don't want to return...
I've been getting established in my new home... organizing my life and slowly putting the wheels back on the track. I got a new desk today and I totally love it. I've been spending my day casually setting up my computer and getting my equipment on-line. Everything is getting back in order and I don't want anything to get in the way of that. It's nice to be home... it's nice to no longer be a nomad.
I've been thinking about the purpose of future bone marrow biopsies and CT scans. I almost want to skip all that and assume the cancer is completely cured. Ignorance is bliss and all that. If you think about it, it's a win-win situation: 1> Cancer stays away and I don't have to worry about it, or 2> Cancer returns and shortens my life-span, but I had a carefree existence.
For treatment to swallow up the last time one has... is a very sad thing.
Of course, there are also plenty of people out there who have stuck with treatment despite the odds and have beaten the big C.
It's a gamble: enjoy your remaining time or fight and suffer for the chance of more time.
Now I know these thoughts should be the furthest from my mind, but to consider ignoring the advice of experienced doctors... it requires one to check the odds and evaluate the deck.
I know they want to keep giving me bone marrow biopsies to "re-stage" my lymphoma, but I feel that doesn't really make sense if I am only stage I. If it progresses to stage II, then fine... but to go from stage I to the marrow... seems unlikely.
In other words, I am fine with the doctors assuming that the cancer isn't in the marrow. They can call me Stage I?. For the pleasure of never being subjected to that amount of pain again... I am fine with that.
Also, they may me to go to Stanford for the radiation part of my treatment. I also don't see the point... why not go to the local oncologist for that? I'm not about to sacrifice my next semester of school just because a doctor is uncomfortable coordinating with an unknown radiation oncologist in Berkeley.
For that matter, I'm not about to let anything interfere in my next semester, cancer be damned!
In two days I will return to Stanford for a follow-up appointment. I will arrive at 1pm, get my labs and x-rays, and wait until 3pm for my clinic appointment. It feels like a "return" of some sort... like I've been on a vacation from all this cancer stuff lately. I don't want to return...
I've been getting established in my new home... organizing my life and slowly putting the wheels back on the track. I got a new desk today and I totally love it. I've been spending my day casually setting up my computer and getting my equipment on-line. Everything is getting back in order and I don't want anything to get in the way of that. It's nice to be home... it's nice to no longer be a nomad.
I've been thinking about the purpose of future bone marrow biopsies and CT scans. I almost want to skip all that and assume the cancer is completely cured. Ignorance is bliss and all that. If you think about it, it's a win-win situation: 1> Cancer stays away and I don't have to worry about it, or 2> Cancer returns and shortens my life-span, but I had a carefree existence.
For treatment to swallow up the last time one has... is a very sad thing.
Of course, there are also plenty of people out there who have stuck with treatment despite the odds and have beaten the big C.
It's a gamble: enjoy your remaining time or fight and suffer for the chance of more time.
Now I know these thoughts should be the furthest from my mind, but to consider ignoring the advice of experienced doctors... it requires one to check the odds and evaluate the deck.
I know they want to keep giving me bone marrow biopsies to "re-stage" my lymphoma, but I feel that doesn't really make sense if I am only stage I. If it progresses to stage II, then fine... but to go from stage I to the marrow... seems unlikely.
In other words, I am fine with the doctors assuming that the cancer isn't in the marrow. They can call me Stage I?. For the pleasure of never being subjected to that amount of pain again... I am fine with that.
Also, they may me to go to Stanford for the radiation part of my treatment. I also don't see the point... why not go to the local oncologist for that? I'm not about to sacrifice my next semester of school just because a doctor is uncomfortable coordinating with an unknown radiation oncologist in Berkeley.
For that matter, I'm not about to let anything interfere in my next semester, cancer be damned!
Tuesday, November 25, 2008
[11-25-08] Out
[5:15pm]
I am out. Instead of 2-3 weeks of living next to the Stanford hospital, I have been released after only a week. Right now, I am typing these words at my sister's house. Tomorrow I gather my belongings and move to Berkeley... to home. I've been a nomad since the beginning of September, and it is quite nice to finally be able to drop anchor.
Now I can finally start picking up the pieces and get back on track. True, there's probably radiation down the road... but the hard part is over now. What matters is that I'll be able to remain in school while undergoing radiation. Moving forward in life.
On a completely different subject...
They say I can take my mask off after ten days... and I think to myself: what if I take it off now? All my other limitations seems to have been based on strict "guidelines" that were later relaxed. Perhaps, through almost a year of these treatments, I have learned the limitations of my own body. Perhaps I am qualified to make my own judgments on the matter.
The truth is: I am just tired. I am done making exceptions and limiting my life experiences due to this cancer. I need to return to normal.
And if someone tried to impose one of those limitations... well, maybe I just wont let them. For example, I am supposed to get a bone marrow biopsy 3 months from day 0, then 6 months, then once a year for at least five years. Maybe I just wont permit them. What are they going to do: send me to prison? Plus, once the cancer is in my marrow, aren't I automatically Stage IV? Perhaps it's better not to know if it's in the marrow.
It's one of the ways I've been changed through all of this: I am perhaps a bit more sefish and defiant. Life is short and I am going to minimize any suffering. If I have a choice, I am going to do things my way!
I am out. Instead of 2-3 weeks of living next to the Stanford hospital, I have been released after only a week. Right now, I am typing these words at my sister's house. Tomorrow I gather my belongings and move to Berkeley... to home. I've been a nomad since the beginning of September, and it is quite nice to finally be able to drop anchor.
Now I can finally start picking up the pieces and get back on track. True, there's probably radiation down the road... but the hard part is over now. What matters is that I'll be able to remain in school while undergoing radiation. Moving forward in life.
On a completely different subject...
They say I can take my mask off after ten days... and I think to myself: what if I take it off now? All my other limitations seems to have been based on strict "guidelines" that were later relaxed. Perhaps, through almost a year of these treatments, I have learned the limitations of my own body. Perhaps I am qualified to make my own judgments on the matter.
The truth is: I am just tired. I am done making exceptions and limiting my life experiences due to this cancer. I need to return to normal.
And if someone tried to impose one of those limitations... well, maybe I just wont let them. For example, I am supposed to get a bone marrow biopsy 3 months from day 0, then 6 months, then once a year for at least five years. Maybe I just wont permit them. What are they going to do: send me to prison? Plus, once the cancer is in my marrow, aren't I automatically Stage IV? Perhaps it's better not to know if it's in the marrow.
It's one of the ways I've been changed through all of this: I am perhaps a bit more sefish and defiant. Life is short and I am going to minimize any suffering. If I have a choice, I am going to do things my way!
Friday, November 21, 2008
[11-21-08] Ducks
[1:33pm]
I definitely like the recovery phase much more than the treatment phase: getting better each day is far more agreeable than getting worse each day, no matter the initial conditions.
It feels silly to say something so obvious, but I love feeling better -- I want this to continue more rapidly; I want to facilitate this. I want to run! I want to be in better shape than I was pre-BMT. Accordingly, I've decided to push myself harder and get some exercise. So, I got out today and went for a walk.
The physical therapist recommended a walk of 20-30 minutes a day, but since I was new to all this, my target time was 20 minutes. I think there's some rules about being around a caregiver at all times while outside the home or something, but I figured that if I made a bee-line from here to the hospital that no one could really complain. I mean, what can they say? "What if you collapsed all by yourself?" Then I'd say, "Yeah, I'd collapse in a hospital -- that'd be real bad."
The worst part about all this is that I had to put on my stupid HEPA-mask. Let me tell you, there is nothing worse than a runny nose while wearing one of those. Then there's the people looking at you strangely as you pass them... Now, I could lie to everyone and say that I don't care what people think of me, but that's not entirely true. I could say that I defiantly glare at those staring at the man in the mask, but that's not true either. On the other hand, I don't sheepishly avert my eyes either -- I'm certainly not ashamed about all this. The truth is in the middle ground: I don't care what random strangers think of me... as long as I don't notice it. So, my strategy: Look where you'd normally look; act how you'd normally act, but when you get the feeling that you're being stared at and you're about to make eye contact... just defocus your eyes. :P
There was this kid that was running gleefully in front of his parents. As he approached me, he stopped dead in his tracks. He looked at me, then looked at his parents, then looked at me again. He simply stood there, waiting for his parents, unsure how to proceed in front of this strange person with a strange mask. Some defocusing was helpful there...
Other than that, I was too distracted by the world around me to even consider people's reactions. I remember seeing a little finch on the side of the sidewalk, and thinking to myself: "I want to be as free as this bird from now on; I'll never be hospitalized again." And I looked at the trees and the plants and the nature and all the good outdoorsy stuff. I felt happy, and I thought to myself, "As much as I don't like the effort and difficulty of getting outside and going for a walk, I'm glad I did. That seems like a lesson I keep learning: life is about the journey, not the destination. I need to hit the textbooks." Then I stopped by the fountain at the main entrance to the hospital and watched the ducks...
From a distance, it looks like a fountain, but upon closer inspection, you learn that it is really a duck playground. There's the larger fountains shooting water that the ducks like to hide under, and there's the smaller fountains that the ducks like to sip from or clean themselves with, and there's these little islands with plants to conceal the ducks when they feel like hiding from the world.
Then I saw these two ducks playfighting with each other. They were relentless! Both ducks would bite each other's legs and they would swim in furious circles like a dog chasing its own tail. Then they would break apart, but you could always see this particular pair eyeing each other across the water. One would swim a little closer, and the other would veer away or pretend not to notice. And, suddenly, one of the two will furiously attack the other. This would repeat over and over again.
And I stood there, just laughing and smiling at the ducks... with my sounds of joy somewhat muffled by the mask, but not prevented in the slightest. I'm going to go see those ducks every day.
I definitely like the recovery phase much more than the treatment phase: getting better each day is far more agreeable than getting worse each day, no matter the initial conditions.
It feels silly to say something so obvious, but I love feeling better -- I want this to continue more rapidly; I want to facilitate this. I want to run! I want to be in better shape than I was pre-BMT. Accordingly, I've decided to push myself harder and get some exercise. So, I got out today and went for a walk.
The physical therapist recommended a walk of 20-30 minutes a day, but since I was new to all this, my target time was 20 minutes. I think there's some rules about being around a caregiver at all times while outside the home or something, but I figured that if I made a bee-line from here to the hospital that no one could really complain. I mean, what can they say? "What if you collapsed all by yourself?" Then I'd say, "Yeah, I'd collapse in a hospital -- that'd be real bad."
The worst part about all this is that I had to put on my stupid HEPA-mask. Let me tell you, there is nothing worse than a runny nose while wearing one of those. Then there's the people looking at you strangely as you pass them... Now, I could lie to everyone and say that I don't care what people think of me, but that's not entirely true. I could say that I defiantly glare at those staring at the man in the mask, but that's not true either. On the other hand, I don't sheepishly avert my eyes either -- I'm certainly not ashamed about all this. The truth is in the middle ground: I don't care what random strangers think of me... as long as I don't notice it. So, my strategy: Look where you'd normally look; act how you'd normally act, but when you get the feeling that you're being stared at and you're about to make eye contact... just defocus your eyes. :P
There was this kid that was running gleefully in front of his parents. As he approached me, he stopped dead in his tracks. He looked at me, then looked at his parents, then looked at me again. He simply stood there, waiting for his parents, unsure how to proceed in front of this strange person with a strange mask. Some defocusing was helpful there...
Other than that, I was too distracted by the world around me to even consider people's reactions. I remember seeing a little finch on the side of the sidewalk, and thinking to myself: "I want to be as free as this bird from now on; I'll never be hospitalized again." And I looked at the trees and the plants and the nature and all the good outdoorsy stuff. I felt happy, and I thought to myself, "As much as I don't like the effort and difficulty of getting outside and going for a walk, I'm glad I did. That seems like a lesson I keep learning: life is about the journey, not the destination. I need to hit the textbooks." Then I stopped by the fountain at the main entrance to the hospital and watched the ducks...
From a distance, it looks like a fountain, but upon closer inspection, you learn that it is really a duck playground. There's the larger fountains shooting water that the ducks like to hide under, and there's the smaller fountains that the ducks like to sip from or clean themselves with, and there's these little islands with plants to conceal the ducks when they feel like hiding from the world.
Then I saw these two ducks playfighting with each other. They were relentless! Both ducks would bite each other's legs and they would swim in furious circles like a dog chasing its own tail. Then they would break apart, but you could always see this particular pair eyeing each other across the water. One would swim a little closer, and the other would veer away or pretend not to notice. And, suddenly, one of the two will furiously attack the other. This would repeat over and over again.
And I stood there, just laughing and smiling at the ducks... with my sounds of joy somewhat muffled by the mask, but not prevented in the slightest. I'm going to go see those ducks every day.
Wednesday, November 19, 2008
[11-19-08] Freedom (Day +16)
[1:32pm]
On Monday, I bargained with my doctors to be let out on Wednesday. All I had to do was drink 3 liters of water a day, eat some food, and practice my breathing exercises. On Tuesday evening, after it was evident that I had fulfilled all of my promises, the doctors agreed to discharge me on Wednesday.
So why did I not shout out with glee? Why did I keep this wonderful news to myself? Because it was something so great, that if it were to be taken from me, my heart would be broken. To never acknowledge this news is to never expect it; if I don't expect it, then its failure to come true will not disappoint.
In other words, I feared that somehow they would take this promise of freedom away from me... and they almost did.
Last night, I had a fever of 38.2 for slightly under an hour. They ordered some blood cultured (which take a few days to process) and took some blood samples. At this point, I was sure that I had more time on my tenure at Stanford Hospital -- I was mortified.
Fortunately, when the doctors approached me this morning they said that I technically did not have a fever! If you have a temperature of 38.3 or above, then you have a fever. If you have a temperature of 38.2 for over an hour, then you have a fever. I just squeaked by!
After the doctors made me promise to return if the blood cultures showed any positives, or if my fever returned, they promised me that I would get discharged today!
All that happened about 4 hours ago, but it has not set in until now. I've been spending the day like I've been spending the past few days -- sleeping as much as I possibly can. I have no doubt that I was in a hospital-induced depression.
Just in the past half hour or so, I have felt that fog start to lift. I look out my window and stare at the auburn trees in the wind and think: "that's freedom." Then I get filled with such a profound mix of emotions that my eyes can't help but get a bit teary. I am not an emotional guy.
I felt the same way when my mom insisted we go out for a walk. I had spent the entire day sleeping (or tying to sleep) and I think she recognized, for the sake of my spirits, that I needed a change of venue.
So we left the BMT ward, and she wheel-chaired me around the hospital. At one point, we came across two large doors opening the hospital to the dark outside. She asked me, "Do you want to go outside?"
I wanted to go out more than anything in the world. "But we can't," I said.
"Of course we can! Let 'em try to stop me," she announced.
Out there, in the freezing night air, I felt completely happy. I felt that weird mix of strong emotions that I spoke of previously; the emotions that made me teary eyed. I wanted to never go indoors ever again. Mom asked me if I wanted to go back inside, but I told her that I wanted to wait for a few more minutes. Then the wind got the best of me, and we returned to the BMT ward.
So here I am again, in my room, watching the gardeners do their work in the garden below. And I think to myself: "That has got to be the most wonderful job in the world." To spend all that time outside... exerting yourself... creating life. It make me want to abandon my engineering discipline for something that would keep me outdoors -- forget the difference in salary. It reminds me of the movie "Office Space," where the protagonist leaves his job in a cubicle and ultimately finds happiness in construction.
Still, I'm sitting here thinking about my feelings... and I think I may have been expressing only half of the story. It's not that I love the outdoors, it's that I hate being trapped indoors. It's not that I love my freedom, it's that I hate losing it.
Now, I'm not an idiot -- I very well recognize that this little hospital stay may have just saved my life. But that doesn't change the fact that, somehow, I have been wronged... and maybe I'm just shooting the messenger, but I can't help how I feel: I hate this hospital.
Please don't think me unappreciative, but, as I said, all this dehumanizes us cancer patients. We're not at a hospital -- we're at a veterinary clinic. Now, do you think those cats and dogs appreciate their shots and rectal examinations? I bet you they hate the vet too.
See why I can't wait to get out?
On Monday, I bargained with my doctors to be let out on Wednesday. All I had to do was drink 3 liters of water a day, eat some food, and practice my breathing exercises. On Tuesday evening, after it was evident that I had fulfilled all of my promises, the doctors agreed to discharge me on Wednesday.
So why did I not shout out with glee? Why did I keep this wonderful news to myself? Because it was something so great, that if it were to be taken from me, my heart would be broken. To never acknowledge this news is to never expect it; if I don't expect it, then its failure to come true will not disappoint.
In other words, I feared that somehow they would take this promise of freedom away from me... and they almost did.
Last night, I had a fever of 38.2 for slightly under an hour. They ordered some blood cultured (which take a few days to process) and took some blood samples. At this point, I was sure that I had more time on my tenure at Stanford Hospital -- I was mortified.
Fortunately, when the doctors approached me this morning they said that I technically did not have a fever! If you have a temperature of 38.3 or above, then you have a fever. If you have a temperature of 38.2 for over an hour, then you have a fever. I just squeaked by!
After the doctors made me promise to return if the blood cultures showed any positives, or if my fever returned, they promised me that I would get discharged today!
All that happened about 4 hours ago, but it has not set in until now. I've been spending the day like I've been spending the past few days -- sleeping as much as I possibly can. I have no doubt that I was in a hospital-induced depression.
Just in the past half hour or so, I have felt that fog start to lift. I look out my window and stare at the auburn trees in the wind and think: "that's freedom." Then I get filled with such a profound mix of emotions that my eyes can't help but get a bit teary. I am not an emotional guy.
I felt the same way when my mom insisted we go out for a walk. I had spent the entire day sleeping (or tying to sleep) and I think she recognized, for the sake of my spirits, that I needed a change of venue.
So we left the BMT ward, and she wheel-chaired me around the hospital. At one point, we came across two large doors opening the hospital to the dark outside. She asked me, "Do you want to go outside?"
I wanted to go out more than anything in the world. "But we can't," I said.
"Of course we can! Let 'em try to stop me," she announced.
Out there, in the freezing night air, I felt completely happy. I felt that weird mix of strong emotions that I spoke of previously; the emotions that made me teary eyed. I wanted to never go indoors ever again. Mom asked me if I wanted to go back inside, but I told her that I wanted to wait for a few more minutes. Then the wind got the best of me, and we returned to the BMT ward.
So here I am again, in my room, watching the gardeners do their work in the garden below. And I think to myself: "That has got to be the most wonderful job in the world." To spend all that time outside... exerting yourself... creating life. It make me want to abandon my engineering discipline for something that would keep me outdoors -- forget the difference in salary. It reminds me of the movie "Office Space," where the protagonist leaves his job in a cubicle and ultimately finds happiness in construction.
Still, I'm sitting here thinking about my feelings... and I think I may have been expressing only half of the story. It's not that I love the outdoors, it's that I hate being trapped indoors. It's not that I love my freedom, it's that I hate losing it.
Now, I'm not an idiot -- I very well recognize that this little hospital stay may have just saved my life. But that doesn't change the fact that, somehow, I have been wronged... and maybe I'm just shooting the messenger, but I can't help how I feel: I hate this hospital.
Please don't think me unappreciative, but, as I said, all this dehumanizes us cancer patients. We're not at a hospital -- we're at a veterinary clinic. Now, do you think those cats and dogs appreciate their shots and rectal examinations? I bet you they hate the vet too.
See why I can't wait to get out?
Tuesday, November 18, 2008
[11-18-08] The Morality of Suffering (Day +15)
[Counts]
WBC:10.3
HCT:31.8
PLT:58,000
The counts section ends here, as I'm pretty sure they'll all be good from now on.
[4:09pm]
My mom just said, "Well, this part is almost over." She said, "... this part is almost over." This nightmarish journey has an end in sight: a different nightmarish journey.
Ok, maybe I'm being a bit melodramatic -- the BMT hospitalization part is by far the most difficult. But I've been focusing so much on that aspect that I am so ready for it all to be done! Now I have to face the post-BMT Stanford infusion period, then the radiation period (hopefully in Berkeley area), then the life-long routine cancer testing phase (perhaps the most daunting of them all).
It seems that the most pernicious aspect of cancer is the fact that it is not finite. Diabetes may be a life-threatening life-long disease, but everything will work out fine if it's treatment is seriously followed. With cancer, on the other hand, one has to be subjected to harsh treatments with unknown outcomes...all you can do is suffer through it and pray to whatever you find holy. Even if the outcome is favorable, and the cancer is cured, it can always come back -- it's ghost is always there to haunt you. Which would you prefer? A pill to take to keep your cancer permanently in remission? Or a chemotherapeutic agent to attempt to destroy the cancer, but can cause severe long term side effects, unhinge your life, and, of course, can return at any time. That's what I mean by not finite: there is no end.
Taken to the other extreme, if one were to have a bullet shot through their head, then that would be it: a finite death. And that is, without question, what all cancer warriors are fighting against. But is a bullet through the head more pernicious than a few years fighting a losing battle against a cancer that has you so battle-worn that you are stripped of all identity and converted into this wounded animal? A wounded animal that no longer has the energy for witty banter with the nurses; A wounded animal that does nothing but poop, vomit, eat (if through a tube), and drink (again, if through a tube)... and all that is of concern to those around the animal is it's input(what comes in) and output (what goes out). Seems that the bullet has a greater respect for life with a smaller amount of suffering.
So, this part is almost over. They have transferred me into a double room, which is a good sign for those looking to get out of here -- it means your counts are good enough that severe precautions are not necessary.
As luck would have it, they transferred me into a room with a guy who was having his transplant today! I was glad for the guy, until I encountered that overwhelming stem-cell stench... the stench of poorly fried shellfish that had been left out in the sun for a few days.
The funny part is that everyone was fine with it, except for me -- I nearly vomited 7 or 8 times. I requested some Ativan and air freshener. When they arrived, I was spraying air freshner into my face as I was getting the Ativan -- it worked, for a time.
Fortunately, the smell goes away with time. Plus, my roommate just got discharged (a day after transplant! Why is mine so long?), so my mom and I stole his window seat. It's much nicer here.
Truthfully, I'm getting a little depressed in this hospital. I've just been here too long; been caged up to an IV for too long -- I want my freedom; I want to go home. Been trying to sleep away the days, but that never works. All you can do is make sure you eat enough, drink enough (3L), and do their little breathing exercise thingy enough to get discharged. They say that there's a chance I'll get discharged on Wednesday, but I don't really believe that... so, it looks like Thursday. Two whole days from now.
WBC:10.3
HCT:31.8
PLT:58,000
The counts section ends here, as I'm pretty sure they'll all be good from now on.
[4:09pm]
My mom just said, "Well, this part is almost over." She said, "... this part is almost over." This nightmarish journey has an end in sight: a different nightmarish journey.
Ok, maybe I'm being a bit melodramatic -- the BMT hospitalization part is by far the most difficult. But I've been focusing so much on that aspect that I am so ready for it all to be done! Now I have to face the post-BMT Stanford infusion period, then the radiation period (hopefully in Berkeley area), then the life-long routine cancer testing phase (perhaps the most daunting of them all).
It seems that the most pernicious aspect of cancer is the fact that it is not finite. Diabetes may be a life-threatening life-long disease, but everything will work out fine if it's treatment is seriously followed. With cancer, on the other hand, one has to be subjected to harsh treatments with unknown outcomes...all you can do is suffer through it and pray to whatever you find holy. Even if the outcome is favorable, and the cancer is cured, it can always come back -- it's ghost is always there to haunt you. Which would you prefer? A pill to take to keep your cancer permanently in remission? Or a chemotherapeutic agent to attempt to destroy the cancer, but can cause severe long term side effects, unhinge your life, and, of course, can return at any time. That's what I mean by not finite: there is no end.
Taken to the other extreme, if one were to have a bullet shot through their head, then that would be it: a finite death. And that is, without question, what all cancer warriors are fighting against. But is a bullet through the head more pernicious than a few years fighting a losing battle against a cancer that has you so battle-worn that you are stripped of all identity and converted into this wounded animal? A wounded animal that no longer has the energy for witty banter with the nurses; A wounded animal that does nothing but poop, vomit, eat (if through a tube), and drink (again, if through a tube)... and all that is of concern to those around the animal is it's input(what comes in) and output (what goes out). Seems that the bullet has a greater respect for life with a smaller amount of suffering.
So, this part is almost over. They have transferred me into a double room, which is a good sign for those looking to get out of here -- it means your counts are good enough that severe precautions are not necessary.
As luck would have it, they transferred me into a room with a guy who was having his transplant today! I was glad for the guy, until I encountered that overwhelming stem-cell stench... the stench of poorly fried shellfish that had been left out in the sun for a few days.
The funny part is that everyone was fine with it, except for me -- I nearly vomited 7 or 8 times. I requested some Ativan and air freshener. When they arrived, I was spraying air freshner into my face as I was getting the Ativan -- it worked, for a time.
Fortunately, the smell goes away with time. Plus, my roommate just got discharged (a day after transplant! Why is mine so long?), so my mom and I stole his window seat. It's much nicer here.
Truthfully, I'm getting a little depressed in this hospital. I've just been here too long; been caged up to an IV for too long -- I want my freedom; I want to go home. Been trying to sleep away the days, but that never works. All you can do is make sure you eat enough, drink enough (3L), and do their little breathing exercise thingy enough to get discharged. They say that there's a chance I'll get discharged on Wednesday, but I don't really believe that... so, it looks like Thursday. Two whole days from now.
Sunday, November 2, 2008
[11-02-08] Queasy Buddha (Day -1)
[7:17pm]
I originally wasn't going to post today -- the world was just too bleak. My stomach pain/queasiness/discomfort/whatever was distressing every aspect of my life -- not like you need to vomit, but that you're just sick in the stomach.
I spent basically the entire day trying to combat it. Chugging Maalox, repeatedly going to the bathroom, sleeping, lying still, concentrating... anything! Eventually, I game to realize that the only practical strategy was unconsciousness.
So, when poor Liz came to visit me, I wasn't very good company. I pretty much slept most of the time. But what else could I do?
What's worse is that I began to get depressed about this. 3 more weeks of this sort of stomach sickness was an unbearable thought -- but what could be done?
Enter the brilliant doctors and their brilliant drugs.
It turns out, that my GI tract is all messed up due to the chemo. So, it's not your normal "flu" like symptoms that is causing my queasiness. The doctors prescribed a gnarly painkiller called Dilaudid, and it works great! All of a sudden, I feel like my life has returned to me! I can concentrate enough to type in my blog, or watch a bit of TV, or play some video games -- it's wonderful!
I'm staying on this stuff. And it's not recreational or anything like that, I'm just happy to not be suffering. It's Buddhist philosophy: "Without suffering, there is no happiness." [Edit: Apparently I'm completely wrong here, so, instead just consider the quote my personal philosophy] Well, my absence of suffering is making me damn happy right now.
I originally wasn't going to post today -- the world was just too bleak. My stomach pain/queasiness/discomfort/whatever was distressing every aspect of my life -- not like you need to vomit, but that you're just sick in the stomach.
I spent basically the entire day trying to combat it. Chugging Maalox, repeatedly going to the bathroom, sleeping, lying still, concentrating... anything! Eventually, I game to realize that the only practical strategy was unconsciousness.
So, when poor Liz came to visit me, I wasn't very good company. I pretty much slept most of the time. But what else could I do?
What's worse is that I began to get depressed about this. 3 more weeks of this sort of stomach sickness was an unbearable thought -- but what could be done?
Enter the brilliant doctors and their brilliant drugs.
It turns out, that my GI tract is all messed up due to the chemo. So, it's not your normal "flu" like symptoms that is causing my queasiness. The doctors prescribed a gnarly painkiller called Dilaudid, and it works great! All of a sudden, I feel like my life has returned to me! I can concentrate enough to type in my blog, or watch a bit of TV, or play some video games -- it's wonderful!
I'm staying on this stuff. And it's not recreational or anything like that, I'm just happy to not be suffering. It's Buddhist philosophy: "Without suffering, there is no happiness." [Edit: Apparently I'm completely wrong here, so, instead just consider the quote my personal philosophy] Well, my absence of suffering is making me damn happy right now.
Tuesday, October 21, 2008
[10-21-08] It starts...
[4:09pm]
The BMT process has officially started.
Today, I received a dose of Gemcitabine and Vinorelbine (Navelbine). Unlike all the other chemotherapy drugs I will take, these two are the only ones which will be a "normal" dose... I believe Gemcitabine is used for pancreatic cancer, and I have received a comparable dose. Because of this, I expected these drugs to be without side-effects...
I was slightly wrong -- after an hour or so, I got that familiar "delicate stomach" feeling and a headache. The headache may be due to exertion, however -- I can tell that my red counts have been on a slow decline. (A few days ago, I had my counts. I was better than I was pre-transfusion, but still moderately anemic.)
It was nice that the infusions together were under an hour.
Also, I was equipped with a continuous mini-IV pump. Heperin is currently flowing into my catheter at a measly 0.5ml per hour! This is to prevent those pesky blood clots. I have it attached like a fanny pack -- the nurse mentioned holding it like a purse, but what sane male would do that? It's not as bad as I thought; it is pretty portable (only 100ml bag) and maintenance-free.
In fact, the nurse spent quite some time explaining how to control the pump in case of any trouble -- it is very intuitive. She repeated her instructions several times -- I guess some cancer patients are so zonked out that it is necessary. I guess I will be one of them soon enough.
Since today marked the first day of my BMT, many nurses expressed their certainty of a cure or an easy transplant. I found such optimism a little bit disturbing. Firstly, both assertions of certainty are not statistically accurate -- I'd say you need 98% or greater to use the terms "will be" or "certain." Otherwise, I'd recommend "believe," "feel," or "hope."
Secondly, it makes sense that the nurses have a solid grasp of cure rates and problem-free BMTs. This being true, then it seems that the nurses were willfully expressing a false belief of certainty in a positive outcome. I'm sure they believe that I will be cured or do fine, but I doubt their certainty.
So, why were they doing this? Is saying stuff like "you will be fine" the polite thing to do? Will reality be changed by denying uncertainty? OF course not. If anything, I believe that recognizing potential obstacles and challenges will help us deal with the future. I want to be told to expect a "shitty time" and to be reminded that a remission post-BMT is probable, but not certain. I don't want superstition to be a part of my treatment.
Don't get me wrong -- I'm not denying the existence of self-fulfilling prophecies. For example, I believe that going into a test with a positive attitude will yield higher scores. But a positive attitude strengthening the good cells and making the bad cells commit suicide... nah.
Perhaps my lack of faith is a character flaw... but I don't feel that way. I have thought a lot about my spirituality and beliefs through all of this; the prospect of death can do that. Oddly enough, I find my lack of spirituality/faith a source of strength. I am comforted in a grounded and absolute reality, and I find the prospect of nonexistence... peaceful. It certainly didn't bug me before I was born. :P
So, although I may not be certain of the outcome... I am absolutely certain that everything will work out fine in the end. Strange, huh? An absence of faith is a sort of faith in itself.
Anyhow, for good measure, I should probably counter all that philosophy with something superficial... hmm... Oh, I can't have beer anymore! Noooooooooooooooooooooooo... I'm gonna miss that. When I come out of this, I'll probably be a lightweight with my alcohol -- happy with just a six-pack. You betcha!~
The BMT process has officially started.
Today, I received a dose of Gemcitabine and Vinorelbine (Navelbine). Unlike all the other chemotherapy drugs I will take, these two are the only ones which will be a "normal" dose... I believe Gemcitabine is used for pancreatic cancer, and I have received a comparable dose. Because of this, I expected these drugs to be without side-effects...
I was slightly wrong -- after an hour or so, I got that familiar "delicate stomach" feeling and a headache. The headache may be due to exertion, however -- I can tell that my red counts have been on a slow decline. (A few days ago, I had my counts. I was better than I was pre-transfusion, but still moderately anemic.)
It was nice that the infusions together were under an hour.
Also, I was equipped with a continuous mini-IV pump. Heperin is currently flowing into my catheter at a measly 0.5ml per hour! This is to prevent those pesky blood clots. I have it attached like a fanny pack -- the nurse mentioned holding it like a purse, but what sane male would do that? It's not as bad as I thought; it is pretty portable (only 100ml bag) and maintenance-free.
In fact, the nurse spent quite some time explaining how to control the pump in case of any trouble -- it is very intuitive. She repeated her instructions several times -- I guess some cancer patients are so zonked out that it is necessary. I guess I will be one of them soon enough.
Since today marked the first day of my BMT, many nurses expressed their certainty of a cure or an easy transplant. I found such optimism a little bit disturbing. Firstly, both assertions of certainty are not statistically accurate -- I'd say you need 98% or greater to use the terms "will be" or "certain." Otherwise, I'd recommend "believe," "feel," or "hope."
Secondly, it makes sense that the nurses have a solid grasp of cure rates and problem-free BMTs. This being true, then it seems that the nurses were willfully expressing a false belief of certainty in a positive outcome. I'm sure they believe that I will be cured or do fine, but I doubt their certainty.
So, why were they doing this? Is saying stuff like "you will be fine" the polite thing to do? Will reality be changed by denying uncertainty? OF course not. If anything, I believe that recognizing potential obstacles and challenges will help us deal with the future. I want to be told to expect a "shitty time" and to be reminded that a remission post-BMT is probable, but not certain. I don't want superstition to be a part of my treatment.
Don't get me wrong -- I'm not denying the existence of self-fulfilling prophecies. For example, I believe that going into a test with a positive attitude will yield higher scores. But a positive attitude strengthening the good cells and making the bad cells commit suicide... nah.
Perhaps my lack of faith is a character flaw... but I don't feel that way. I have thought a lot about my spirituality and beliefs through all of this; the prospect of death can do that. Oddly enough, I find my lack of spirituality/faith a source of strength. I am comforted in a grounded and absolute reality, and I find the prospect of nonexistence... peaceful. It certainly didn't bug me before I was born. :P
So, although I may not be certain of the outcome... I am absolutely certain that everything will work out fine in the end. Strange, huh? An absence of faith is a sort of faith in itself.
Anyhow, for good measure, I should probably counter all that philosophy with something superficial... hmm... Oh, I can't have beer anymore! Noooooooooooooooooooooooo... I'm gonna miss that. When I come out of this, I'll probably be a lightweight with my alcohol -- happy with just a six-pack. You betcha!~
Tuesday, October 7, 2008
[10-07-08] ... and time passes.
[9:33pm]
With no treatments or medical appointments, I am allowed a few moments to stop and think about things. Most of the time I think about the future: making it through school... achieving a career... a family. Some of the time, I think about how much my path has derailed.
This is why keeping busy can be a blessing. This is also why school was very helpful during my initial treatment. Gotta keep moving...
But don't get me wrong -- my thoughts may be a bit deep right now, but I'm certain the BMT will be a success. I always daydream and evaluate possibilities. It's part of my personality; I always do it. What are the probabilities? How can we plan for all eventualities?
For example, last Sunday I was talking to Liz about our carefree lifestyle. I mean, it certainly isn't carefree, but it should be. We stress about work, school, family, money... but when it comes right down to it, everything will be fine.
To illustrate my point, I began to think about the worst possible scenario. I mean the worst: like a nuclear strike destroys California while I am out of state. Everyone I know is gone; everything I own is gone; I find myself in the metro station without a dime. I could work at Taco Bell, or as a bagger in the local grocer. It's not high-tech, but at least I could get the job quickly, and it would be enough to feed me. Not enough for rent, but I could sleep under the stars in the local redwood forest. If there's no jobs available, I'm sure there would be some government aid or something. No government aid? Even then, I'm certain I could figure things out.
So if you're stressed out about a midterm, for example, you can think to yourself: It is alright if I fail this. In fact, it is alright if I fail school, lose my job, and get evicted. At least I have food. Even if I don't have food, at least I'm not in pain. If I am starving and in pain, well at least my family is alright. etc...etc... Things could be always be worse... always.
Kinda makes the midterm seem a little less important. Kinda makes life seem like it is made up of a bunch of little things, instead of all big things.
My point is that thinking about how things can get worse can make one appreciate the present, maybe even make it a bit less stressful. That is, as long as you don't get all depressed and emo about it; gotta keep things in perspective, of course.
But, then again, keeping busy prevents you from thinking at all. And that's nice too.
With no treatments or medical appointments, I am allowed a few moments to stop and think about things. Most of the time I think about the future: making it through school... achieving a career... a family. Some of the time, I think about how much my path has derailed.
This is why keeping busy can be a blessing. This is also why school was very helpful during my initial treatment. Gotta keep moving...
But don't get me wrong -- my thoughts may be a bit deep right now, but I'm certain the BMT will be a success. I always daydream and evaluate possibilities. It's part of my personality; I always do it. What are the probabilities? How can we plan for all eventualities?
For example, last Sunday I was talking to Liz about our carefree lifestyle. I mean, it certainly isn't carefree, but it should be. We stress about work, school, family, money... but when it comes right down to it, everything will be fine.
To illustrate my point, I began to think about the worst possible scenario. I mean the worst: like a nuclear strike destroys California while I am out of state. Everyone I know is gone; everything I own is gone; I find myself in the metro station without a dime. I could work at Taco Bell, or as a bagger in the local grocer. It's not high-tech, but at least I could get the job quickly, and it would be enough to feed me. Not enough for rent, but I could sleep under the stars in the local redwood forest. If there's no jobs available, I'm sure there would be some government aid or something. No government aid? Even then, I'm certain I could figure things out.
So if you're stressed out about a midterm, for example, you can think to yourself: It is alright if I fail this. In fact, it is alright if I fail school, lose my job, and get evicted. At least I have food. Even if I don't have food, at least I'm not in pain. If I am starving and in pain, well at least my family is alright. etc...etc... Things could be always be worse... always.
Kinda makes the midterm seem a little less important. Kinda makes life seem like it is made up of a bunch of little things, instead of all big things.
My point is that thinking about how things can get worse can make one appreciate the present, maybe even make it a bit less stressful. That is, as long as you don't get all depressed and emo about it; gotta keep things in perspective, of course.
But, then again, keeping busy prevents you from thinking at all. And that's nice too.
Sunday, October 5, 2008
[10-05-08] Enjoy it!
[7:48pm]
What a nice weekend I just had in Palo Alto! On Saturday, Liz and I went shopping, watched a movie (Religulous), and ate a fancy dinner. Today, we ate a nice breakfast, created a beautiful ceramic plate, and watched another movie (Blindness). Quite an excellent way to celebrate 8 months!
The arts and crafts portion was kinda neat. You basically walk into the shop, pick out a piece of ceramic art, and then paint it with glaze. They charge you for the art and paint, then you paint it and they fire it in the kilon. You pick up your finished masterpiece days later. Pretty nifty.
As for the movies, Blindness was a bit disturbappointing and Religulous was delightfully thought provoking.
Nice to digress from cancer for a bit.
Actually, I'm going to do just that; I don't feel like talking about cancer right now. So I wont. Except a quick update: they collected all the stem cells they needed on Friday and gave me two units of blood. I feel human again! Joy! I loooove bloood. Plus, at this point, I have a two week vacation from all health/cancer related stuff! After that comes the hard part. But until then...
I'm going to enjoy my reprieve! (Edit: Respite?)
What a nice weekend I just had in Palo Alto! On Saturday, Liz and I went shopping, watched a movie (Religulous), and ate a fancy dinner. Today, we ate a nice breakfast, created a beautiful ceramic plate, and watched another movie (Blindness). Quite an excellent way to celebrate 8 months!
The arts and crafts portion was kinda neat. You basically walk into the shop, pick out a piece of ceramic art, and then paint it with glaze. They charge you for the art and paint, then you paint it and they fire it in the kilon. You pick up your finished masterpiece days later. Pretty nifty.
As for the movies, Blindness was a bit disturbappointing and Religulous was delightfully thought provoking.
Nice to digress from cancer for a bit.
Actually, I'm going to do just that; I don't feel like talking about cancer right now. So I wont. Except a quick update: they collected all the stem cells they needed on Friday and gave me two units of blood. I feel human again! Joy! I loooove bloood. Plus, at this point, I have a two week vacation from all health/cancer related stuff! After that comes the hard part. But until then...
I'm going to enjoy my reprieve! (Edit: Respite?)
Tuesday, September 2, 2008
[9-02-08] Isolation
[12:13am]
It's been a long day. So I'll keep this brief, before I fall into slumber.
Yesterday, Liz and I spent a lovely day looking at a new house for rent. This particular place probably wont work out, but it was fun nonetheless. We also spent a good deal of time trying to get me fed -- which is quite harder than it looks when you are limited to restaurants which serve fully cooked food to patrons outdoors.
It's all due to the neutropenia thing. I can't eat uncooked vegetables or anything for that matter: microbes and whatnot. Also, I can't be in crowded places without a hepa-mask on: people with their colds, and whatnot. So, if we want to eat out, we have to eat outdoors. After waiting about an hour for a seat outdoors, we decided to bail and get some take-out.
(Get This: While looking for alternative food options we found a "taqueria" that did not serve burritos! In fact, the lady got a little snippy when I asked for one. Sheesh, no need to get mad at me just because you work in a pseudo-taqueria. Am I wrong?)
Anyhow, I wake up today (Monday), and Liz drops me off at the bart (transit) station. Dutifully, I don my blue hepa-mask and confirm to the world that I am a cancer-infested chemo-eater. It's not a garment to be proud of. I'm sitting there in a train with two signs: on the left, there is a sign for breast cancer awareness; on the right, there is a sign for a leukemia and lymphoma marathon. Then there is these normal people sitting there casually, noting me, and noting the two cancer signs behind me. I can see them feeling the plague upon them, and not wanting to acknowledge it. For you see, I am sick. And society does not like sick people.
But the topic for today is isolation. I need to protect myself from a cold or something because my immune system is so weak. Accordingly, I need to avoid the deadly germ -- to avoid anything which may propagate or spread this evil menace. So, I can't go home.
Unfortunately, my sister and her daughters seem to have caught a bit of a cold at the herbal symposium this weekend. So, after a long day of traveling, I have to establish a new home-base on the boat to the south...and it is a messy boat too :P Still, I was really, really, really, tired at that point. I wanted nothing more than to just lie down. So, before I can lie down, I've got to get situated. Thankfully, Barbara is getting everything arranged while I casually play my Nintendo DS -- otherwise it'd be all too much.
So, writing really helps me vent... but I feel it necessary to point out that I was really quite pissed off about all this. Not at any thing, and especially not toward any person, except... this damn cancer. I just don't like it. It sucks.
But, as I said, writing helps. I'm good now. I'm going to go make some nachos and then go to sleep. Cancer still sucks, but at least I can still gorge myself on nachos. Goodnight.
It's been a long day. So I'll keep this brief, before I fall into slumber.
Yesterday, Liz and I spent a lovely day looking at a new house for rent. This particular place probably wont work out, but it was fun nonetheless. We also spent a good deal of time trying to get me fed -- which is quite harder than it looks when you are limited to restaurants which serve fully cooked food to patrons outdoors.
It's all due to the neutropenia thing. I can't eat uncooked vegetables or anything for that matter: microbes and whatnot. Also, I can't be in crowded places without a hepa-mask on: people with their colds, and whatnot. So, if we want to eat out, we have to eat outdoors. After waiting about an hour for a seat outdoors, we decided to bail and get some take-out.
(Get This: While looking for alternative food options we found a "taqueria" that did not serve burritos! In fact, the lady got a little snippy when I asked for one. Sheesh, no need to get mad at me just because you work in a pseudo-taqueria. Am I wrong?)
Anyhow, I wake up today (Monday), and Liz drops me off at the bart (transit) station. Dutifully, I don my blue hepa-mask and confirm to the world that I am a cancer-infested chemo-eater. It's not a garment to be proud of. I'm sitting there in a train with two signs: on the left, there is a sign for breast cancer awareness; on the right, there is a sign for a leukemia and lymphoma marathon. Then there is these normal people sitting there casually, noting me, and noting the two cancer signs behind me. I can see them feeling the plague upon them, and not wanting to acknowledge it. For you see, I am sick. And society does not like sick people.
But the topic for today is isolation. I need to protect myself from a cold or something because my immune system is so weak. Accordingly, I need to avoid the deadly germ -- to avoid anything which may propagate or spread this evil menace. So, I can't go home.
Unfortunately, my sister and her daughters seem to have caught a bit of a cold at the herbal symposium this weekend. So, after a long day of traveling, I have to establish a new home-base on the boat to the south...and it is a messy boat too :P Still, I was really, really, really, tired at that point. I wanted nothing more than to just lie down. So, before I can lie down, I've got to get situated. Thankfully, Barbara is getting everything arranged while I casually play my Nintendo DS -- otherwise it'd be all too much.
So, writing really helps me vent... but I feel it necessary to point out that I was really quite pissed off about all this. Not at any thing, and especially not toward any person, except... this damn cancer. I just don't like it. It sucks.
But, as I said, writing helps. I'm good now. I'm going to go make some nachos and then go to sleep. Cancer still sucks, but at least I can still gorge myself on nachos. Goodnight.
Sunday, August 31, 2008
[8-31-08] Discharge!
[10:15am]
Yay! I get to leave my room today! Hopefully around 12:00pm. Of course, they are insisting that I wear a mask, as my neutropenic score is 280!
That means that my WBC is 1.0, and Neutrophils at 28%.
I don't look forward to walking around with a mask. Bah. They're also planning on hooking me up with some more of that bone-pain-inducing Neupogen so that I get those counts up and return safely in two weeks. I've got to push forward!
Hemoglobin is still slipping at 10.5! Approaching that devastating 10. All this is like a race-track! I mean, sure, it's my life and everything, but who says you can't have a little fun playing the numbers?
If I sit around all day, hoping the numbers will get higher, I will surely find myself repeatedly disappointed. If I embrace the inevitable, then I can have a little fun with it. Look at falling numbers as a challenge, not a curse. Low numbers? Fine, a chance to test my mettle. Let's see how these numbers duke it out with the fabled sword of Neutroscalibur!
Ok, before I get too deep in the realm of silly. Allow me to make my point:
1: Things will suck.
2: Often, there is very little you can do about #1.
3: So just embrace it: make it a game, look forward to it, whatever it takes to make #1 not get you down. Because...
4: When it all comes down to it, and you've done everything you can, everything else is up to chance. So go with it.
Just a bit of my twisted philosophy.
Yay! I get to leave my room today! Hopefully around 12:00pm. Of course, they are insisting that I wear a mask, as my neutropenic score is 280!
That means that my WBC is 1.0, and Neutrophils at 28%.
I don't look forward to walking around with a mask. Bah. They're also planning on hooking me up with some more of that bone-pain-inducing Neupogen so that I get those counts up and return safely in two weeks. I've got to push forward!
Hemoglobin is still slipping at 10.5! Approaching that devastating 10. All this is like a race-track! I mean, sure, it's my life and everything, but who says you can't have a little fun playing the numbers?
If I sit around all day, hoping the numbers will get higher, I will surely find myself repeatedly disappointed. If I embrace the inevitable, then I can have a little fun with it. Look at falling numbers as a challenge, not a curse. Low numbers? Fine, a chance to test my mettle. Let's see how these numbers duke it out with the fabled sword of Neutroscalibur!
Ok, before I get too deep in the realm of silly. Allow me to make my point:
1: Things will suck.
2: Often, there is very little you can do about #1.
3: So just embrace it: make it a game, look forward to it, whatever it takes to make #1 not get you down. Because...
4: When it all comes down to it, and you've done everything you can, everything else is up to chance. So go with it.
Just a bit of my twisted philosophy.
Thursday, August 21, 2008
[8-21-08] Vacation
[11:47am]
My appointment for the super important pet-CT scan is scheduled for Monday, the 25th. The following day, I will meet with an oncologist in Berkeley (mine remains on vacation) to discuss the next step. Will I have 2 more ICE treatments? Can I use the salvage ICE for apheresis, instead of waiting longer and using Cytoxan? When will Stanford begin their part? Hopefully, all these questions will be answered by then.
Until then, I am on vacation. School is far away from here; treatment is far away from here. Until the 25th, there's not much I can fret about... or reason to do so. It's not just the distance -- it really feels as if the whole "cancer" thing is further from my mind, here. Plus, there's the whole "don't sweat the small stuff" feeling that arises when there's a diagnosis of this magnitude. So, basically, here I am, without a worry in the world... for the next 4 days. Until then: it's vacation.
After the 25th? Who knows? Treatment could pick up pace (which I hope), or I could have yet more time to burn. Regardless, I'm not counting the month or so in Stanford in my vacation category -- that's probably not going to be a picnic.
My current plan? To have a good time, of course. Tentatively, that also includes a new video game every day. :) Yesterday was Sid Meier's Civilization Revolution -- a pretty fun game where you strategically build and develop a civilization from scratch. Today is a game called Condemned -- I haven't yet played it, but it looks like some sort of horror/sci-fi adventure. Looks fun.
[5:49pm]
I've been spending the day help Dan install a new bathtub. It's a lot of work, and I do get more tired easily, but it is nice to know that I'm still capable, ya know? Those hemoglobins aren't going to stay high forever.
My appointment for the super important pet-CT scan is scheduled for Monday, the 25th. The following day, I will meet with an oncologist in Berkeley (mine remains on vacation) to discuss the next step. Will I have 2 more ICE treatments? Can I use the salvage ICE for apheresis, instead of waiting longer and using Cytoxan? When will Stanford begin their part? Hopefully, all these questions will be answered by then.
Until then, I am on vacation. School is far away from here; treatment is far away from here. Until the 25th, there's not much I can fret about... or reason to do so. It's not just the distance -- it really feels as if the whole "cancer" thing is further from my mind, here. Plus, there's the whole "don't sweat the small stuff" feeling that arises when there's a diagnosis of this magnitude. So, basically, here I am, without a worry in the world... for the next 4 days. Until then: it's vacation.
After the 25th? Who knows? Treatment could pick up pace (which I hope), or I could have yet more time to burn. Regardless, I'm not counting the month or so in Stanford in my vacation category -- that's probably not going to be a picnic.
My current plan? To have a good time, of course. Tentatively, that also includes a new video game every day. :) Yesterday was Sid Meier's Civilization Revolution -- a pretty fun game where you strategically build and develop a civilization from scratch. Today is a game called Condemned -- I haven't yet played it, but it looks like some sort of horror/sci-fi adventure. Looks fun.
[5:49pm]
I've been spending the day help Dan install a new bathtub. It's a lot of work, and I do get more tired easily, but it is nice to know that I'm still capable, ya know? Those hemoglobins aren't going to stay high forever.
Saturday, August 9, 2008
[8-08-08] Frozen Yogurt Aggression
[1:12am]
Today was a huge day! I just got home a few minutes ago, and wanted to say a bit about the big Stanford Bone Marrow Transplant Clinic before I doze off. But there's just too much info, and I'm too tired -- so I'll do it tomorrow.
But before I go, let me say a few words about the dangers of frozen yogurt. Yes, frozen yogurt.
I've always been somewhat of a minimalist. I try not to have to many unnecessary possessions and I try to keep my life simple. In a way, that has combined with the "college-student frugality" and extended to absurdity. For example, I haven't gone out for ice cream in ages. I mean, it costs like $5 and it doesn't fill you up! So, what's the point? Why not just get a big juicy burger or something -- at least that *feeds* you. Accordingly, instead of going out for ice cream, I'd just allocate the money of yummy fast food or something.
My current situation has forced me to re-evaluate that philosophy. And I've discovered that I have quite a lot of catching up to do. I've been going to all the different frozen yogurt places in Berkeley for the past week or so; trying all the different flavors. In fact, Liz and I just got back from Baskin Robbins after I satisfied a huge PB & Chocolate craving. My point is that you will frequently find me, walking home from class, while gleefully munching on a giant bowl of frozen yogurt. You can eat SO MUCH more frozen yogurt than ice cream, it's great!
So, how is this dangerous?
For some reason, two days in a row, while I was eating frozen yogurt, I was verbally assaulted and threatened by the homeless around telegraph. It starts with a rude comment from them, me looking blankly and continuing to eat my yogurt, and then the threats of physical violence. Maybe it's because, with all this going on, I'm really not intimidated or scared. After a bone marrow biopsy, fear of a little fist fight seems ridiculous. Or maybe it's because I'm so carefree while I'm eating the yogurt. It's as if the yogurt is some untold beacon of aggression. I don't know. Whatever it is, it seems to upset them.
And although I'm a pacifist, and consider myself to not be an overall jerk, I thought to myself: "What if, instead of just ignoring them, I stood my ground and put my dukes up?" Going the path of least resistance is what I always do -- why shouldn't I try something new, have a new experience... What have I got to lose?
Then the thought faded, and I quickly became absorbed yet-again in my blackberry swirl. However, I thought about it a bit later, and realized to my amusement, that it wouldn't have been a fair fight.
Two outcomes:
1> I lose: Then this jerk just beat up a dude with cancer. Can you believe that? That's so not cool.
2> I win: Then this dude with cancer just beat this jerk up. He's anemic and has no white blood cells, but he can still kick your ass. What a loser.
Now here's why I told this story... Thursday, my sister told me that she felt my blog has a "positive spin" or something. There is no "positive spin" in any of this -- I'm desperately trying to 100% accurately document my feelings, observations, and experiences without any sort of sugar coating whatsoever. I need this to be truth, not story. That last entry was 100% how I feel.
When I was doing my own research into Hodgkin's, I looked to internet blogs for guidance and information. It was a great resource, but it seemed like a lot of the gory details (i.e., diarrhea) or negative emotions were left out. I wanted to know just how bad it got.
So, in an effort to maintain journalistic integrity, I'm writing a detailed story about how I regressed to a high-school kid while eating frozen yogurt. I thought those thoughts and they were related to my "journey" -- so they get written down. In addition, I vow to continue to document all of my silly, negative, mean-spirited, stupid, ambitious, optimistic, pessimistic, embarrassing, loving, greedy, and otherwise not-OK thoughts! Lack of censorship is what makes it real.
Today was a huge day! I just got home a few minutes ago, and wanted to say a bit about the big Stanford Bone Marrow Transplant Clinic before I doze off. But there's just too much info, and I'm too tired -- so I'll do it tomorrow.
But before I go, let me say a few words about the dangers of frozen yogurt. Yes, frozen yogurt.
I've always been somewhat of a minimalist. I try not to have to many unnecessary possessions and I try to keep my life simple. In a way, that has combined with the "college-student frugality" and extended to absurdity. For example, I haven't gone out for ice cream in ages. I mean, it costs like $5 and it doesn't fill you up! So, what's the point? Why not just get a big juicy burger or something -- at least that *feeds* you. Accordingly, instead of going out for ice cream, I'd just allocate the money of yummy fast food or something.
My current situation has forced me to re-evaluate that philosophy. And I've discovered that I have quite a lot of catching up to do. I've been going to all the different frozen yogurt places in Berkeley for the past week or so; trying all the different flavors. In fact, Liz and I just got back from Baskin Robbins after I satisfied a huge PB & Chocolate craving. My point is that you will frequently find me, walking home from class, while gleefully munching on a giant bowl of frozen yogurt. You can eat SO MUCH more frozen yogurt than ice cream, it's great!
So, how is this dangerous?
For some reason, two days in a row, while I was eating frozen yogurt, I was verbally assaulted and threatened by the homeless around telegraph. It starts with a rude comment from them, me looking blankly and continuing to eat my yogurt, and then the threats of physical violence. Maybe it's because, with all this going on, I'm really not intimidated or scared. After a bone marrow biopsy, fear of a little fist fight seems ridiculous. Or maybe it's because I'm so carefree while I'm eating the yogurt. It's as if the yogurt is some untold beacon of aggression. I don't know. Whatever it is, it seems to upset them.
And although I'm a pacifist, and consider myself to not be an overall jerk, I thought to myself: "What if, instead of just ignoring them, I stood my ground and put my dukes up?" Going the path of least resistance is what I always do -- why shouldn't I try something new, have a new experience... What have I got to lose?
Then the thought faded, and I quickly became absorbed yet-again in my blackberry swirl. However, I thought about it a bit later, and realized to my amusement, that it wouldn't have been a fair fight.
Two outcomes:
1> I lose: Then this jerk just beat up a dude with cancer. Can you believe that? That's so not cool.
2> I win: Then this dude with cancer just beat this jerk up. He's anemic and has no white blood cells, but he can still kick your ass. What a loser.
Now here's why I told this story... Thursday, my sister told me that she felt my blog has a "positive spin" or something. There is no "positive spin" in any of this -- I'm desperately trying to 100% accurately document my feelings, observations, and experiences without any sort of sugar coating whatsoever. I need this to be truth, not story. That last entry was 100% how I feel.
When I was doing my own research into Hodgkin's, I looked to internet blogs for guidance and information. It was a great resource, but it seemed like a lot of the gory details (i.e., diarrhea) or negative emotions were left out. I wanted to know just how bad it got.
So, in an effort to maintain journalistic integrity, I'm writing a detailed story about how I regressed to a high-school kid while eating frozen yogurt. I thought those thoughts and they were related to my "journey" -- so they get written down. In addition, I vow to continue to document all of my silly, negative, mean-spirited, stupid, ambitious, optimistic, pessimistic, embarrassing, loving, greedy, and otherwise not-OK thoughts! Lack of censorship is what makes it real.
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