"Austin's personality causes him to moderate feelings of happiness, so that he does not feel like he is making the mistake of assuming that things will remain good forever. This is not pessimism, but rather a desire to have his emotional state be rational and acceptable to his intellect."
A quote from one of Barbara's comments. It perplexes me that I cannot deny or verify this... it has the scent of truth, though. Is my level of self-awareness sub-par, or are there insights that aren't so readily available from the inside looking out. I think maybe neither: Barbara just knows me pretty damn well.
Anyways... I'm doing well; getting back into the swing of school. It's funny how school is like a trampoline wall -- the harder you push, the harder it pushes back. Sure, I can make it through school with an easy push... but I *want* to work hard right now... I *need* to... and school, it's pushing back.
But that is what is so great about school. You can *never* do enough studying, so there's always something to do. It's not like a movie or video game -- when it ends, you say to yourself: "Now what?" With learning, it just doesn't end.
I've pretty much forgotten the whole cancer thing. All it means, at this moment, is getting up at a dreadfully early hour and getting zapped for a few minutes. 8 more to go and I'm done.
I get the feeling that this sort of victory is anticlimactic. Funny, that.
As for my memories. Everything was relatively easy, except for the BMT.
The BMT is something I just want to forget forever -- except for those beautiful moments that make me feel love. I remember Barbara playing Chopin on her laptop... talking with Liz via my computer... watching her knit... watching Barbara knit... and, of course, many moments with my Mom. But most especially when she wheeled me outside, late at night, when I was low. Those moments make me smile. They also make me feel guilty for not expressing my love enough... for not excessively iterating my appreciation, gratitude, and love.
But, with the good comes the bad. I try to forget, but whenever I think about it in detail, I end up in an emotional funk for the rest of the evening. Thank god I have a few beers in the fridge and an episodes of House and 24 coming up.
Showing posts with label rant. Show all posts
Showing posts with label rant. Show all posts
Monday, February 23, 2009
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!
Monday, December 1, 2008
[12-01-08] Stanford Appointment
[10:37pm]
Today was my appointment... it was exhausting. I left my house at 10:30am and returned at 7:30pm for a 20 minute appointment with my doctor. Transit time was 2.5 hours (one way), labwork had an hour wait, and the clinic appointment had an 80 minute wait. A whole day wasted; I'm so tired of this stuff. It will be much better once I have my own transportation, of course.
Then I have two more appointments scheduled two weeks from now. So I have freedom for 12 of the next 14 days... the price paid for two 20 minute appointments. Bah. But enough complaining...
I did get to learn a few things. Top on my list was the bone marrow biopsy. Apparently, the biopsy is to determine whether I had any chromosome damage/toxicity due to the high dose chemo. This sort of damage could be classified as pre-cancerous. So, unfortunately, it looks like it is justified. My doctor plans for two more biopsies (coupled with pet-CT scans): one about a month from now, and another in 4 months. Fortunately, it doesn't look like the bone marrow biopsies will be a part of the routine in the years to come.
I then asked about transferring my care to my local oncologist. I explained how routine transportation to and from Stanford would make school in Berkeley quite difficult. My doctor ignored the initial question and instead explained how she felt that it was too early (by about 3 months) to return to school. I then firmly explained that "for the sake of my happiness, I need to return to school... soon." Surprisingly, she just nodded and then made sure I was taking a reduced courseload. As for transferring my care locally, she said that should begin at our next appointment, two weeks from now.
She also scheduled another CT scan before my next appointment. It has nothing to do with cancer -- there was a subtle "Nodular Grand-Glass Opacity" seen on my last CT scan taken while I was hospitalized. It usually indicates a fungal lung infection of some kind, that I obtained due to my severely impaired immune system. From what I gather, it is typically of little concern at this stage, and it usually fixes itself when confronted with a stronger immune system... it is only a problem when it gets out of hand. But, as my scans indicate, it is very subtle.
I then asked: "In your opinion, is the cancer gone?" Her response was something like, "Right now, yes, I believe it is." I didn't like that response... something in the way she said "right now" seemed to stress the possibility of a relapse. Or perhaps she was just trying indicate that further intervention, such as radiation, would be necessary. Or maybe, by "right now", she meant "with the information I currently possess, I believe..." She could be trying to indicate that the results from the bone marrow biopsy or pet-CT scan would change her opinion. Regardless... that is what I am left with.
We also talked briefly about the mask: I am now officially allowed to take it off in most situations. I only have to wear it around sick people, dusty outside areas, or in hospitals.
Also, radiation was briefly mentioned. It does look like that it will be able to be handled by my local radiation oncologist. Woo-hoo! She said we will talk about it further at my next appointment.
Lastly, I asked about plane travel to Michigan. I had an invitation to visit Liz's family and wanted to see what my doctor thought. When I told her the date, she adamantly opposed the idea. "Maybe if it were two months later than it is," she said. Oh well. Heh... the thought of wearing that huge scary mask on the plane... they'd probably think I was a terrorist with a gas bomb or something.
That's it for the appointment!
On my way home, I was actually feeling quite down. I'm not exactly sure why... maybe it was from something my doctor said, or from exhaustion from the day of traveling, or perhaps from cancer stealing yet another day of my life. Accordingly, I stopped by 7-11 to buy my ultimate comfort food: nachos.
I've bought these particular nachos countless times in the past, and today... they didn't taste very good. Just another brick in the wall.
I'm just so tired of all this stuff. At first it seemed like I had a limitless capacity to battle cancer -- an infinite endurance. I think perhaps I have less than I thought. Those cancer warriors out there... the people that fight this stuff for years and years... how do they do it?
Maybe it's just post BMT stress/anxiety/depression/trauma whatever. It's probably temporary. But it feels like something has taken it's toll.
Barbara mentioned that she didn't agree with my "head in the sand" strategy. Of course! It's a totally stupid proposition! It's not a strategy at all! But, you know, those few moments in the sand are quite peaceful...
Today was my appointment... it was exhausting. I left my house at 10:30am and returned at 7:30pm for a 20 minute appointment with my doctor. Transit time was 2.5 hours (one way), labwork had an hour wait, and the clinic appointment had an 80 minute wait. A whole day wasted; I'm so tired of this stuff. It will be much better once I have my own transportation, of course.
Then I have two more appointments scheduled two weeks from now. So I have freedom for 12 of the next 14 days... the price paid for two 20 minute appointments. Bah. But enough complaining...
I did get to learn a few things. Top on my list was the bone marrow biopsy. Apparently, the biopsy is to determine whether I had any chromosome damage/toxicity due to the high dose chemo. This sort of damage could be classified as pre-cancerous. So, unfortunately, it looks like it is justified. My doctor plans for two more biopsies (coupled with pet-CT scans): one about a month from now, and another in 4 months. Fortunately, it doesn't look like the bone marrow biopsies will be a part of the routine in the years to come.
I then asked about transferring my care to my local oncologist. I explained how routine transportation to and from Stanford would make school in Berkeley quite difficult. My doctor ignored the initial question and instead explained how she felt that it was too early (by about 3 months) to return to school. I then firmly explained that "for the sake of my happiness, I need to return to school... soon." Surprisingly, she just nodded and then made sure I was taking a reduced courseload. As for transferring my care locally, she said that should begin at our next appointment, two weeks from now.
She also scheduled another CT scan before my next appointment. It has nothing to do with cancer -- there was a subtle "Nodular Grand-Glass Opacity" seen on my last CT scan taken while I was hospitalized. It usually indicates a fungal lung infection of some kind, that I obtained due to my severely impaired immune system. From what I gather, it is typically of little concern at this stage, and it usually fixes itself when confronted with a stronger immune system... it is only a problem when it gets out of hand. But, as my scans indicate, it is very subtle.
I then asked: "In your opinion, is the cancer gone?" Her response was something like, "Right now, yes, I believe it is." I didn't like that response... something in the way she said "right now" seemed to stress the possibility of a relapse. Or perhaps she was just trying indicate that further intervention, such as radiation, would be necessary. Or maybe, by "right now", she meant "with the information I currently possess, I believe..." She could be trying to indicate that the results from the bone marrow biopsy or pet-CT scan would change her opinion. Regardless... that is what I am left with.
We also talked briefly about the mask: I am now officially allowed to take it off in most situations. I only have to wear it around sick people, dusty outside areas, or in hospitals.
Also, radiation was briefly mentioned. It does look like that it will be able to be handled by my local radiation oncologist. Woo-hoo! She said we will talk about it further at my next appointment.
Lastly, I asked about plane travel to Michigan. I had an invitation to visit Liz's family and wanted to see what my doctor thought. When I told her the date, she adamantly opposed the idea. "Maybe if it were two months later than it is," she said. Oh well. Heh... the thought of wearing that huge scary mask on the plane... they'd probably think I was a terrorist with a gas bomb or something.
That's it for the appointment!
On my way home, I was actually feeling quite down. I'm not exactly sure why... maybe it was from something my doctor said, or from exhaustion from the day of traveling, or perhaps from cancer stealing yet another day of my life. Accordingly, I stopped by 7-11 to buy my ultimate comfort food: nachos.
I've bought these particular nachos countless times in the past, and today... they didn't taste very good. Just another brick in the wall.
I'm just so tired of all this stuff. At first it seemed like I had a limitless capacity to battle cancer -- an infinite endurance. I think perhaps I have less than I thought. Those cancer warriors out there... the people that fight this stuff for years and years... how do they do it?
Maybe it's just post BMT stress/anxiety/depression/trauma whatever. It's probably temporary. But it feels like something has taken it's toll.
Barbara mentioned that she didn't agree with my "head in the sand" strategy. Of course! It's a totally stupid proposition! It's not a strategy at all! But, you know, those few moments in the sand are quite peaceful...
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!
Wednesday, November 19, 2008
[11-19-08] Freedom (Day +16)
[1:32pm]
On Monday, I bargained with my doctors to be let out on Wednesday. All I had to do was drink 3 liters of water a day, eat some food, and practice my breathing exercises. On Tuesday evening, after it was evident that I had fulfilled all of my promises, the doctors agreed to discharge me on Wednesday.
So why did I not shout out with glee? Why did I keep this wonderful news to myself? Because it was something so great, that if it were to be taken from me, my heart would be broken. To never acknowledge this news is to never expect it; if I don't expect it, then its failure to come true will not disappoint.
In other words, I feared that somehow they would take this promise of freedom away from me... and they almost did.
Last night, I had a fever of 38.2 for slightly under an hour. They ordered some blood cultured (which take a few days to process) and took some blood samples. At this point, I was sure that I had more time on my tenure at Stanford Hospital -- I was mortified.
Fortunately, when the doctors approached me this morning they said that I technically did not have a fever! If you have a temperature of 38.3 or above, then you have a fever. If you have a temperature of 38.2 for over an hour, then you have a fever. I just squeaked by!
After the doctors made me promise to return if the blood cultures showed any positives, or if my fever returned, they promised me that I would get discharged today!
All that happened about 4 hours ago, but it has not set in until now. I've been spending the day like I've been spending the past few days -- sleeping as much as I possibly can. I have no doubt that I was in a hospital-induced depression.
Just in the past half hour or so, I have felt that fog start to lift. I look out my window and stare at the auburn trees in the wind and think: "that's freedom." Then I get filled with such a profound mix of emotions that my eyes can't help but get a bit teary. I am not an emotional guy.
I felt the same way when my mom insisted we go out for a walk. I had spent the entire day sleeping (or tying to sleep) and I think she recognized, for the sake of my spirits, that I needed a change of venue.
So we left the BMT ward, and she wheel-chaired me around the hospital. At one point, we came across two large doors opening the hospital to the dark outside. She asked me, "Do you want to go outside?"
I wanted to go out more than anything in the world. "But we can't," I said.
"Of course we can! Let 'em try to stop me," she announced.
Out there, in the freezing night air, I felt completely happy. I felt that weird mix of strong emotions that I spoke of previously; the emotions that made me teary eyed. I wanted to never go indoors ever again. Mom asked me if I wanted to go back inside, but I told her that I wanted to wait for a few more minutes. Then the wind got the best of me, and we returned to the BMT ward.
So here I am again, in my room, watching the gardeners do their work in the garden below. And I think to myself: "That has got to be the most wonderful job in the world." To spend all that time outside... exerting yourself... creating life. It make me want to abandon my engineering discipline for something that would keep me outdoors -- forget the difference in salary. It reminds me of the movie "Office Space," where the protagonist leaves his job in a cubicle and ultimately finds happiness in construction.
Still, I'm sitting here thinking about my feelings... and I think I may have been expressing only half of the story. It's not that I love the outdoors, it's that I hate being trapped indoors. It's not that I love my freedom, it's that I hate losing it.
Now, I'm not an idiot -- I very well recognize that this little hospital stay may have just saved my life. But that doesn't change the fact that, somehow, I have been wronged... and maybe I'm just shooting the messenger, but I can't help how I feel: I hate this hospital.
Please don't think me unappreciative, but, as I said, all this dehumanizes us cancer patients. We're not at a hospital -- we're at a veterinary clinic. Now, do you think those cats and dogs appreciate their shots and rectal examinations? I bet you they hate the vet too.
See why I can't wait to get out?
On Monday, I bargained with my doctors to be let out on Wednesday. All I had to do was drink 3 liters of water a day, eat some food, and practice my breathing exercises. On Tuesday evening, after it was evident that I had fulfilled all of my promises, the doctors agreed to discharge me on Wednesday.
So why did I not shout out with glee? Why did I keep this wonderful news to myself? Because it was something so great, that if it were to be taken from me, my heart would be broken. To never acknowledge this news is to never expect it; if I don't expect it, then its failure to come true will not disappoint.
In other words, I feared that somehow they would take this promise of freedom away from me... and they almost did.
Last night, I had a fever of 38.2 for slightly under an hour. They ordered some blood cultured (which take a few days to process) and took some blood samples. At this point, I was sure that I had more time on my tenure at Stanford Hospital -- I was mortified.
Fortunately, when the doctors approached me this morning they said that I technically did not have a fever! If you have a temperature of 38.3 or above, then you have a fever. If you have a temperature of 38.2 for over an hour, then you have a fever. I just squeaked by!
After the doctors made me promise to return if the blood cultures showed any positives, or if my fever returned, they promised me that I would get discharged today!
All that happened about 4 hours ago, but it has not set in until now. I've been spending the day like I've been spending the past few days -- sleeping as much as I possibly can. I have no doubt that I was in a hospital-induced depression.
Just in the past half hour or so, I have felt that fog start to lift. I look out my window and stare at the auburn trees in the wind and think: "that's freedom." Then I get filled with such a profound mix of emotions that my eyes can't help but get a bit teary. I am not an emotional guy.
I felt the same way when my mom insisted we go out for a walk. I had spent the entire day sleeping (or tying to sleep) and I think she recognized, for the sake of my spirits, that I needed a change of venue.
So we left the BMT ward, and she wheel-chaired me around the hospital. At one point, we came across two large doors opening the hospital to the dark outside. She asked me, "Do you want to go outside?"
I wanted to go out more than anything in the world. "But we can't," I said.
"Of course we can! Let 'em try to stop me," she announced.
Out there, in the freezing night air, I felt completely happy. I felt that weird mix of strong emotions that I spoke of previously; the emotions that made me teary eyed. I wanted to never go indoors ever again. Mom asked me if I wanted to go back inside, but I told her that I wanted to wait for a few more minutes. Then the wind got the best of me, and we returned to the BMT ward.
So here I am again, in my room, watching the gardeners do their work in the garden below. And I think to myself: "That has got to be the most wonderful job in the world." To spend all that time outside... exerting yourself... creating life. It make me want to abandon my engineering discipline for something that would keep me outdoors -- forget the difference in salary. It reminds me of the movie "Office Space," where the protagonist leaves his job in a cubicle and ultimately finds happiness in construction.
Still, I'm sitting here thinking about my feelings... and I think I may have been expressing only half of the story. It's not that I love the outdoors, it's that I hate being trapped indoors. It's not that I love my freedom, it's that I hate losing it.
Now, I'm not an idiot -- I very well recognize that this little hospital stay may have just saved my life. But that doesn't change the fact that, somehow, I have been wronged... and maybe I'm just shooting the messenger, but I can't help how I feel: I hate this hospital.
Please don't think me unappreciative, but, as I said, all this dehumanizes us cancer patients. We're not at a hospital -- we're at a veterinary clinic. Now, do you think those cats and dogs appreciate their shots and rectal examinations? I bet you they hate the vet too.
See why I can't wait to get out?
Tuesday, November 18, 2008
[11-18-08] The Morality of Suffering (Day +15)
[Counts]
WBC:10.3
HCT:31.8
PLT:58,000
The counts section ends here, as I'm pretty sure they'll all be good from now on.
[4:09pm]
My mom just said, "Well, this part is almost over." She said, "... this part is almost over." This nightmarish journey has an end in sight: a different nightmarish journey.
Ok, maybe I'm being a bit melodramatic -- the BMT hospitalization part is by far the most difficult. But I've been focusing so much on that aspect that I am so ready for it all to be done! Now I have to face the post-BMT Stanford infusion period, then the radiation period (hopefully in Berkeley area), then the life-long routine cancer testing phase (perhaps the most daunting of them all).
It seems that the most pernicious aspect of cancer is the fact that it is not finite. Diabetes may be a life-threatening life-long disease, but everything will work out fine if it's treatment is seriously followed. With cancer, on the other hand, one has to be subjected to harsh treatments with unknown outcomes...all you can do is suffer through it and pray to whatever you find holy. Even if the outcome is favorable, and the cancer is cured, it can always come back -- it's ghost is always there to haunt you. Which would you prefer? A pill to take to keep your cancer permanently in remission? Or a chemotherapeutic agent to attempt to destroy the cancer, but can cause severe long term side effects, unhinge your life, and, of course, can return at any time. That's what I mean by not finite: there is no end.
Taken to the other extreme, if one were to have a bullet shot through their head, then that would be it: a finite death. And that is, without question, what all cancer warriors are fighting against. But is a bullet through the head more pernicious than a few years fighting a losing battle against a cancer that has you so battle-worn that you are stripped of all identity and converted into this wounded animal? A wounded animal that no longer has the energy for witty banter with the nurses; A wounded animal that does nothing but poop, vomit, eat (if through a tube), and drink (again, if through a tube)... and all that is of concern to those around the animal is it's input(what comes in) and output (what goes out). Seems that the bullet has a greater respect for life with a smaller amount of suffering.
So, this part is almost over. They have transferred me into a double room, which is a good sign for those looking to get out of here -- it means your counts are good enough that severe precautions are not necessary.
As luck would have it, they transferred me into a room with a guy who was having his transplant today! I was glad for the guy, until I encountered that overwhelming stem-cell stench... the stench of poorly fried shellfish that had been left out in the sun for a few days.
The funny part is that everyone was fine with it, except for me -- I nearly vomited 7 or 8 times. I requested some Ativan and air freshener. When they arrived, I was spraying air freshner into my face as I was getting the Ativan -- it worked, for a time.
Fortunately, the smell goes away with time. Plus, my roommate just got discharged (a day after transplant! Why is mine so long?), so my mom and I stole his window seat. It's much nicer here.
Truthfully, I'm getting a little depressed in this hospital. I've just been here too long; been caged up to an IV for too long -- I want my freedom; I want to go home. Been trying to sleep away the days, but that never works. All you can do is make sure you eat enough, drink enough (3L), and do their little breathing exercise thingy enough to get discharged. They say that there's a chance I'll get discharged on Wednesday, but I don't really believe that... so, it looks like Thursday. Two whole days from now.
WBC:10.3
HCT:31.8
PLT:58,000
The counts section ends here, as I'm pretty sure they'll all be good from now on.
[4:09pm]
My mom just said, "Well, this part is almost over." She said, "... this part is almost over." This nightmarish journey has an end in sight: a different nightmarish journey.
Ok, maybe I'm being a bit melodramatic -- the BMT hospitalization part is by far the most difficult. But I've been focusing so much on that aspect that I am so ready for it all to be done! Now I have to face the post-BMT Stanford infusion period, then the radiation period (hopefully in Berkeley area), then the life-long routine cancer testing phase (perhaps the most daunting of them all).
It seems that the most pernicious aspect of cancer is the fact that it is not finite. Diabetes may be a life-threatening life-long disease, but everything will work out fine if it's treatment is seriously followed. With cancer, on the other hand, one has to be subjected to harsh treatments with unknown outcomes...all you can do is suffer through it and pray to whatever you find holy. Even if the outcome is favorable, and the cancer is cured, it can always come back -- it's ghost is always there to haunt you. Which would you prefer? A pill to take to keep your cancer permanently in remission? Or a chemotherapeutic agent to attempt to destroy the cancer, but can cause severe long term side effects, unhinge your life, and, of course, can return at any time. That's what I mean by not finite: there is no end.
Taken to the other extreme, if one were to have a bullet shot through their head, then that would be it: a finite death. And that is, without question, what all cancer warriors are fighting against. But is a bullet through the head more pernicious than a few years fighting a losing battle against a cancer that has you so battle-worn that you are stripped of all identity and converted into this wounded animal? A wounded animal that no longer has the energy for witty banter with the nurses; A wounded animal that does nothing but poop, vomit, eat (if through a tube), and drink (again, if through a tube)... and all that is of concern to those around the animal is it's input(what comes in) and output (what goes out). Seems that the bullet has a greater respect for life with a smaller amount of suffering.
So, this part is almost over. They have transferred me into a double room, which is a good sign for those looking to get out of here -- it means your counts are good enough that severe precautions are not necessary.
As luck would have it, they transferred me into a room with a guy who was having his transplant today! I was glad for the guy, until I encountered that overwhelming stem-cell stench... the stench of poorly fried shellfish that had been left out in the sun for a few days.
The funny part is that everyone was fine with it, except for me -- I nearly vomited 7 or 8 times. I requested some Ativan and air freshener. When they arrived, I was spraying air freshner into my face as I was getting the Ativan -- it worked, for a time.
Fortunately, the smell goes away with time. Plus, my roommate just got discharged (a day after transplant! Why is mine so long?), so my mom and I stole his window seat. It's much nicer here.
Truthfully, I'm getting a little depressed in this hospital. I've just been here too long; been caged up to an IV for too long -- I want my freedom; I want to go home. Been trying to sleep away the days, but that never works. All you can do is make sure you eat enough, drink enough (3L), and do their little breathing exercise thingy enough to get discharged. They say that there's a chance I'll get discharged on Wednesday, but I don't really believe that... so, it looks like Thursday. Two whole days from now.
Monday, November 17, 2008
[11-17-08] Sweet Sweetness! (Day +14)
[Counts]
WBC:20.2
HCT:30.6
PLT:46,000
[12:34pm]
Everything has changed in an instant. In my last angsty posting, Barbara posted a comment recommending that I try a local mouth pain-relief product, such as Oraljel, to combat my persistent mouth pain. At the time, I was communicating with Liz through the computer, or a series of grunts and awkward hand gestures -- it was the best I could do.
She saw Barbara's comment and immediately offered to drive to the nearest Walgreens to acquire said product. When she returned I applied the product and found instant relief. For the first time in what felt like forever, I was actually talking! Liz and I spend the next few hours talking about stuff -- it was a beautiful thing.
Naturally, everything changed after that. I no longer need any pain medication (Fentanyl) and I can actually eat my meals! That is the two major things keeping me in the Hospital; now it could be as little as 48 hours before I am discharged.
The downside is that, to leave the hospital, one needs to be better. If one is better, they no longer need a single room. So, they moved me to a double with a caregiver that, within minutes, was preventing my mom and I from watching a much anticipated episode of House. Sure, I get wanting to sleep -- 0but it's the middle of the day, when else can I watch some T.V.? With nothing much to do and a lack of sleep haunting me from last night, I decided to get some blissful sleep as well. I was forced awake with loud talking.
But I wasn't upset; this is what happens in double rooms in hospitals. Just don't force double standards on the patients around you.
Perhaps I'm being unreasonable, but I thought our volume level was minimal... and I was really looking forward to watching that episode. Plus, when can we watch it now? Don't they now have precedence to request that we not watch it at any time?
Ok, excuse the rant.
In conclusion, things are going well. I'm going to try to eat well and whatnot to get out of here soon!
WBC:20.2
HCT:30.6
PLT:46,000
[12:34pm]
Everything has changed in an instant. In my last angsty posting, Barbara posted a comment recommending that I try a local mouth pain-relief product, such as Oraljel, to combat my persistent mouth pain. At the time, I was communicating with Liz through the computer, or a series of grunts and awkward hand gestures -- it was the best I could do.
She saw Barbara's comment and immediately offered to drive to the nearest Walgreens to acquire said product. When she returned I applied the product and found instant relief. For the first time in what felt like forever, I was actually talking! Liz and I spend the next few hours talking about stuff -- it was a beautiful thing.
Naturally, everything changed after that. I no longer need any pain medication (Fentanyl) and I can actually eat my meals! That is the two major things keeping me in the Hospital; now it could be as little as 48 hours before I am discharged.
The downside is that, to leave the hospital, one needs to be better. If one is better, they no longer need a single room. So, they moved me to a double with a caregiver that, within minutes, was preventing my mom and I from watching a much anticipated episode of House. Sure, I get wanting to sleep -- 0but it's the middle of the day, when else can I watch some T.V.? With nothing much to do and a lack of sleep haunting me from last night, I decided to get some blissful sleep as well. I was forced awake with loud talking.
But I wasn't upset; this is what happens in double rooms in hospitals. Just don't force double standards on the patients around you.
Perhaps I'm being unreasonable, but I thought our volume level was minimal... and I was really looking forward to watching that episode. Plus, when can we watch it now? Don't they now have precedence to request that we not watch it at any time?
Ok, excuse the rant.
In conclusion, things are going well. I'm going to try to eat well and whatnot to get out of here soon!
Sunday, November 16, 2008
[11-16-08] Sad Times (Day + 13)
[Counts]
WBC: 27.9
HCT: 26.1
Platelets: 36,000
[5:28pm]
Too much complaining; don't read.
I'm in a foul mood. Well, more accurately, I've been in a foul mood... for what seems like days now.
Right now, I'm playing Runebound with Liz -- so I'm definitely happy. (She's in the lead at the moment, but we shall see...)
Anyhow, back to negative vibes...grrrrrr.
So, there's just been too many minor annoyances, too consistently, and for too long now. So now I have to sleep with oxygen on? Ok, no prob. So now I have to be plugged into an O2 meter at all times -- yet another thing to be unplugged when you go to the bathroom. Ok... So now I have to have my PICC line removed because you think it might be the thing causing my low fevers? Argh! Now I have to go back to IV?!?!? After all this effort getting 4 different lines installed? Plus, my veins are all in hiding now -- how are they going to find them? Poke and play?
Then, of course, there's the myriad of side effects from the BMT. But you've heard all about those... except, I'm just about to go crazy because of this mouth pain! It's terrible! My global mouth pain is pretty much gone -- which is nice, but it didn't account for more than 10% of my mouth pain. I got this thing to the base of the left side of the tongue. It is PROFOUND how much pain can be registered in such a small space.
So, I can't talk more than a few words at a time, and always at a cost of pain...
I want to TALK! It's extremely frustrating to be around the people you love the most in the world and feeling like you can't have fun/be fun around them because you have to optimize your words to a caveman level. I like to employ wit and scarcasm -- I can't do that if the pain is too rough!
Then there's sleep. I need sleep! The nurses waking you up every 30 minutes is fine; the alarms on the IV pole every 60 minutes is a bit rough (because the nurses take 10-30minutes to get there); the alarms on the O2 meter every time you need to go to the bathroom is doable... but being extremely tired, falling to blissful slumber and waking up in under 5 minutes EVERY TIME to
mouth pain is enough to drive one mad.
I also want to EAT! I haven't eaten in forever! I want a bacon double cheeseburger, and, unlike most patients here, actually relish the thought of eating it. If I didn't have the pain, I'd eat it now!
All this... is enough to make one depressed and quite frustrated.
WBC: 27.9
HCT: 26.1
Platelets: 36,000
[5:28pm]
Too much complaining; don't read.
I'm in a foul mood. Well, more accurately, I've been in a foul mood... for what seems like days now.
Right now, I'm playing Runebound with Liz -- so I'm definitely happy. (She's in the lead at the moment, but we shall see...)
Anyhow, back to negative vibes...grrrrrr.
So, there's just been too many minor annoyances, too consistently, and for too long now. So now I have to sleep with oxygen on? Ok, no prob. So now I have to be plugged into an O2 meter at all times -- yet another thing to be unplugged when you go to the bathroom. Ok... So now I have to have my PICC line removed because you think it might be the thing causing my low fevers? Argh! Now I have to go back to IV?!?!? After all this effort getting 4 different lines installed? Plus, my veins are all in hiding now -- how are they going to find them? Poke and play?
Then, of course, there's the myriad of side effects from the BMT. But you've heard all about those... except, I'm just about to go crazy because of this mouth pain! It's terrible! My global mouth pain is pretty much gone -- which is nice, but it didn't account for more than 10% of my mouth pain. I got this thing to the base of the left side of the tongue. It is PROFOUND how much pain can be registered in such a small space.
So, I can't talk more than a few words at a time, and always at a cost of pain...
I want to TALK! It's extremely frustrating to be around the people you love the most in the world and feeling like you can't have fun/be fun around them because you have to optimize your words to a caveman level. I like to employ wit and scarcasm -- I can't do that if the pain is too rough!
Then there's sleep. I need sleep! The nurses waking you up every 30 minutes is fine; the alarms on the IV pole every 60 minutes is a bit rough (because the nurses take 10-30minutes to get there); the alarms on the O2 meter every time you need to go to the bathroom is doable... but being extremely tired, falling to blissful slumber and waking up in under 5 minutes EVERY TIME to
mouth pain is enough to drive one mad.
I also want to EAT! I haven't eaten in forever! I want a bacon double cheeseburger, and, unlike most patients here, actually relish the thought of eating it. If I didn't have the pain, I'd eat it now!
All this... is enough to make one depressed and quite frustrated.
Sunday, November 9, 2008
[11-09-08] Fentanyl Conspiracy (Day +6)
[8:37am]
It's no surprise that I have a severe aversion to pain. I've ranted on the subject on several occasions and even have a dedicated tag to link all "pain" postings. Whether it be a bone marrow biopsy or neupogen-associated pain... I hate the pain, and will write about it.
So, you didn't actually think that was the final word on Fentanyl/mouth pain, did ya? Well, the mouth pain is only getting worse, and the Fentanyl and it's requirements are getting quite absurd.
For example:
They hook you up to a pulse/SPO2 (Respiration Oxygen?) monitor as a requirement for anyone on PCA (Patient Controlled Analgesics). This is annoying for all the standard reasons:
1:If you want to go to the bathroom or anything, you have to turn the machine off, then unplug your probe lead (which is tricky in the dark). Multiply this act for every time you need to go to the bathroom/brush teeth/use sink/relocate... and you'll find that you spend quite a lot of time doing this.
2:You have to wear the darn probe indefinitely -- removal destroys the probe. So, one of your left fingers will be made useless -- and especially now, I need *all* my fingers (tricky catheter de-occlusion maneuvers, applying lotion, typing).
But these are just problems of convenience -- the real difficulty lies in the SP (Saturation Percentage) reading for your Oxygen (O2) levels. If, for any reason, the machine thinks that this level is lower than 87, it beeps LOUDLY! This makes sense, as large doses of Fentanyl can cause a decrease in respiration. However, there are a couple of problems with the SP02 reading:
1: A wet or sweaty probe causes drastic reductions in the measured SP02 level (Alarm goes off). This means that you cannot wash your left hand...ever? Ok, so you've figured out how to wash everything *but* the finger with a clever use of a ziploc bag or something... but then, how does one take a shower without it getting wet? Then there's the sweats -- maybe my fingers sweat while in a plastic probe?
2: A loose probe connection ALWAYS causes a reduction in SP02. Remember how one has to wear the probe non-stop 24/7? Well, if any one of a million actions during that time causes the little red light to become misaligned... be prepared for many alarms.
3: Sleeping on one's side causes a reduction in SP02 (for some reason) -- in order to get any sleep during the night, be prepared to learn how to sleep on your back.
4: Random machine weirdness. You could be sitting up, typing away on your computer, no Fentanyl delivered for an hour... and the SP02 alarm goes off. Or it says your pulse is 230 and people come rushing in.
So, where's the conspiracy theory? Well, it's not actually a conspiracy -- I don't think there's a consortium of nurses plotting to prove that the amount of pain I experience does not justify the amount of Fentanyl I use.
I do, however, seem to experience a lack of concern about forced sleeping positions, noisy machines, or the accuracy of the current SP02 reading. The answer to all these problems seems to be the implied: "Well, just take less Fentanyl and you'll be fine."
In honestly think there are nurses here who believe I am taking more Fentanyl than I need, and am currently over-medicated on it. Nevermind the fact that I wake up at 7 and approach the day bright-eyed and bushy tailed... I even skip my afternoon nap so that I can get better sleep at night. The nap, being tired... these things are perfectly normal for a cancer patient undergoing BMT, but nevertheless, I feel like I need to demonstrate my clarity of thought. I also don't have dizzy spells or other things associated with too much Fentanyl.
Still, there have been times where the pain was great and I repeatedly took extra Fentanyl... I'm sure I was a bit drowsy then... but nothing dangerous!
-----------------------------
Enough of my rant. I just finished typing it when my two doctors showed up...
Doctor: "So how has your pain management been doing?"
Me: "Not so well -- I haven't been clicking the relief button because this darn machine gives inaccurate readings, and taking extra Fentanyl doesn't help things. For example, I can't click at all if I want to sleep on my side -- I need to get to sleep. So I usually just work through the pain; plus, I feel that some of the nurses don't want me clicking... maybe because my dose is too high, or that it's dangerous or something."
(Both Doctors) "No, no, no, no, no."
(First Doctor) "Take the Fentanyl -- that's what it's there for. The nurses should be checking the machine's accuracy routinely... there's this bar that goes up and down with your pulse... [forget details] Plus, there's always a doctor on call -- tell the nurses to contact the doctor if they have an issue with your SPO2. I'll be on call tonight if anything comes up.
Me: "Ok, thanks. So, just to be sure, it's OK if I click repeatedly if I have pain?"
Doctor: "If you have pain; take the Fentanyl."
Then they went on to discuss other parts of my health.
So... GREAT! I feel so liberated! This has been a huge weight on my shoulders: pain on one side/upsetting nurses on the other (though I'm sure with some nurses it's all in my head; some are more explicit though).
As originally planned, I'm going to click when I feel pain! It's so simple! *duh* Stupid Austin: Don't let others push you around.
On another note, Barbara mentioned how I haven't been posting my counts -- I'll try to start doing that. She seemed pleased that my WBC went from 0.1 to 0.6 (on Friday)... well, my WBC taken yesterday was 0.1.
I'm told that I'm not recovering yet; that it's still a good 5-9 days or so before I start to recover.
It's no surprise that I have a severe aversion to pain. I've ranted on the subject on several occasions and even have a dedicated tag to link all "pain" postings. Whether it be a bone marrow biopsy or neupogen-associated pain... I hate the pain, and will write about it.
So, you didn't actually think that was the final word on Fentanyl/mouth pain, did ya? Well, the mouth pain is only getting worse, and the Fentanyl and it's requirements are getting quite absurd.
For example:
They hook you up to a pulse/SPO2 (Respiration Oxygen?) monitor as a requirement for anyone on PCA (Patient Controlled Analgesics). This is annoying for all the standard reasons:
1:If you want to go to the bathroom or anything, you have to turn the machine off, then unplug your probe lead (which is tricky in the dark). Multiply this act for every time you need to go to the bathroom/brush teeth/use sink/relocate... and you'll find that you spend quite a lot of time doing this.
2:You have to wear the darn probe indefinitely -- removal destroys the probe. So, one of your left fingers will be made useless -- and especially now, I need *all* my fingers (tricky catheter de-occlusion maneuvers, applying lotion, typing).
But these are just problems of convenience -- the real difficulty lies in the SP (Saturation Percentage) reading for your Oxygen (O2) levels. If, for any reason, the machine thinks that this level is lower than 87, it beeps LOUDLY! This makes sense, as large doses of Fentanyl can cause a decrease in respiration. However, there are a couple of problems with the SP02 reading:
1: A wet or sweaty probe causes drastic reductions in the measured SP02 level (Alarm goes off). This means that you cannot wash your left hand...ever? Ok, so you've figured out how to wash everything *but* the finger with a clever use of a ziploc bag or something... but then, how does one take a shower without it getting wet? Then there's the sweats -- maybe my fingers sweat while in a plastic probe?
2: A loose probe connection ALWAYS causes a reduction in SP02. Remember how one has to wear the probe non-stop 24/7? Well, if any one of a million actions during that time causes the little red light to become misaligned... be prepared for many alarms.
3: Sleeping on one's side causes a reduction in SP02 (for some reason) -- in order to get any sleep during the night, be prepared to learn how to sleep on your back.
4: Random machine weirdness. You could be sitting up, typing away on your computer, no Fentanyl delivered for an hour... and the SP02 alarm goes off. Or it says your pulse is 230 and people come rushing in.
So, where's the conspiracy theory? Well, it's not actually a conspiracy -- I don't think there's a consortium of nurses plotting to prove that the amount of pain I experience does not justify the amount of Fentanyl I use.
I do, however, seem to experience a lack of concern about forced sleeping positions, noisy machines, or the accuracy of the current SP02 reading. The answer to all these problems seems to be the implied: "Well, just take less Fentanyl and you'll be fine."
In honestly think there are nurses here who believe I am taking more Fentanyl than I need, and am currently over-medicated on it. Nevermind the fact that I wake up at 7 and approach the day bright-eyed and bushy tailed... I even skip my afternoon nap so that I can get better sleep at night. The nap, being tired... these things are perfectly normal for a cancer patient undergoing BMT, but nevertheless, I feel like I need to demonstrate my clarity of thought. I also don't have dizzy spells or other things associated with too much Fentanyl.
Still, there have been times where the pain was great and I repeatedly took extra Fentanyl... I'm sure I was a bit drowsy then... but nothing dangerous!
-----------------------------
Enough of my rant. I just finished typing it when my two doctors showed up...
Doctor: "So how has your pain management been doing?"
Me: "Not so well -- I haven't been clicking the relief button because this darn machine gives inaccurate readings, and taking extra Fentanyl doesn't help things. For example, I can't click at all if I want to sleep on my side -- I need to get to sleep. So I usually just work through the pain; plus, I feel that some of the nurses don't want me clicking... maybe because my dose is too high, or that it's dangerous or something."
(Both Doctors) "No, no, no, no, no."
(First Doctor) "Take the Fentanyl -- that's what it's there for. The nurses should be checking the machine's accuracy routinely... there's this bar that goes up and down with your pulse... [forget details] Plus, there's always a doctor on call -- tell the nurses to contact the doctor if they have an issue with your SPO2. I'll be on call tonight if anything comes up.
Me: "Ok, thanks. So, just to be sure, it's OK if I click repeatedly if I have pain?"
Doctor: "If you have pain; take the Fentanyl."
Then they went on to discuss other parts of my health.
So... GREAT! I feel so liberated! This has been a huge weight on my shoulders: pain on one side/upsetting nurses on the other (though I'm sure with some nurses it's all in my head; some are more explicit though).
As originally planned, I'm going to click when I feel pain! It's so simple! *duh* Stupid Austin: Don't let others push you around.
On another note, Barbara mentioned how I haven't been posting my counts -- I'll try to start doing that. She seemed pleased that my WBC went from 0.1 to 0.6 (on Friday)... well, my WBC taken yesterday was 0.1.
I'm told that I'm not recovering yet; that it's still a good 5-9 days or so before I start to recover.
Saturday, November 1, 2008
[11-01-08] Cytoxan (Day -2)
[10:55am]
I forgot: this is supposed to be Christmas! This is what I've been looking for: BMT Fantasyland, where you can just sit back, take your pills, and have your cancer melt away. Nothing is further from the truth.
Everything in here is a little battle. Taking your pills in the morning without vomiting is a battle. Fighting to get your anti-emetics is a battle. Just surviving all this is a battle.
I've come out of the ICU with some battle-damage: A few more scars (one from a removed catheter), an IV placed in my hand, and a weird three-pronged catheter in my neck. Then I was sent home, to the BMT unit. Two transfusions later, I'm feeling a little more energetic, but still I am feeling persistently nauseated. I guess that's how things go around here: a battlezone and a balancing act.
I just hope it gets better. Unrealistic, I know -- but this is putting my body through quite an ordeal. I can't wait to see Liz :P
[2:30]
We started the Cytoxan about an hour ago. Back then, the prospect of more chemo was faced with a good deal of dread. I had nausea and quite an upset stomach -- I couldn't fathom things getting any worse... But, like a good little boy, I took my pre-meds and started the chemo and fell asleep.
I woke up feeling great! I mean, not normal great, but the difference between then and now was profound. So, I'm eating and writing on my blog! Eating cheetos and chicken noodle soup! I haven't eaten like this for days -- it's great! I'm joyful.
Hmmm... On another note, I think I can feel the mucositis starting to creep in -- it not like sores, it seems, but a general sensitivity in the mouth. After my meal of cheetos and soup, it feels like I just had a bunch of Jalapeno peppers... Right now it is just interesting to notice, I'm sure it'll become a huge problem in the future -- they all say it does.
Health Status: Blood Pressure is up, and I have normal temp! Woot!
I forgot: this is supposed to be Christmas! This is what I've been looking for: BMT Fantasyland, where you can just sit back, take your pills, and have your cancer melt away. Nothing is further from the truth.
Everything in here is a little battle. Taking your pills in the morning without vomiting is a battle. Fighting to get your anti-emetics is a battle. Just surviving all this is a battle.
I've come out of the ICU with some battle-damage: A few more scars (one from a removed catheter), an IV placed in my hand, and a weird three-pronged catheter in my neck. Then I was sent home, to the BMT unit. Two transfusions later, I'm feeling a little more energetic, but still I am feeling persistently nauseated. I guess that's how things go around here: a battlezone and a balancing act.
I just hope it gets better. Unrealistic, I know -- but this is putting my body through quite an ordeal. I can't wait to see Liz :P
[2:30]
We started the Cytoxan about an hour ago. Back then, the prospect of more chemo was faced with a good deal of dread. I had nausea and quite an upset stomach -- I couldn't fathom things getting any worse... But, like a good little boy, I took my pre-meds and started the chemo and fell asleep.
I woke up feeling great! I mean, not normal great, but the difference between then and now was profound. So, I'm eating and writing on my blog! Eating cheetos and chicken noodle soup! I haven't eaten like this for days -- it's great! I'm joyful.
Hmmm... On another note, I think I can feel the mucositis starting to creep in -- it not like sores, it seems, but a general sensitivity in the mouth. After my meal of cheetos and soup, it feels like I just had a bunch of Jalapeno peppers... Right now it is just interesting to notice, I'm sure it'll become a huge problem in the future -- they all say it does.
Health Status: Blood Pressure is up, and I have normal temp! Woot!
Saturday, October 25, 2008
[10-25-08] Bad Daydreams
[1:20pm]
We drove all the way down to Stanford to find out that my infusion was scheduled for Sunday, not Saturday! Whoops! We were told, most recently, that the appointment was Saturday, but you've always got to double check everything... be ever vigilant with health care.
There was those times my cisplatin dose was less than required... and the countless times I've had to specify that it was Hodgkin's Lymphoma, not non-Hodgkins Lymphoma.
On another subject, my hair is starting to grow back quite rapidly. My head no longer feels smooth, but scruff -- the change is nice. And I've got my chin hairs back! Still... I don't like it. I want maintain my chemo intensity.
In addition, I had some trouble sleeping last night because I was itching furiously. Still, the itch persists. It's the all-too-familiar Hodgkin's coming back to taunt me and remind me that he's still there. Persistent little bugger.
Now, maybe it's because my spirits have been a bit low lately... But, with the itch coming back, it feels like all this has been for nothing. 8 months of small chemo; doing nothing but making the tumor more resistant to chemo. Bah.
Then, I always ask myself: What if the BMT doesn't kill the tumor? or... What if, after a successful BMT, the tumor returns?
I start to daydream about that possible future... I'd like to think I'd spend my last days bartending on the Galapagos islands, but that's not really me -- is it?
I'd probably jump from clinical study to clinical study, subjecting myself to all sorts of interesting drugs in order to extend life. Then there's be the last-ditch allogeneic (bone marrow from someone else) transplant.
I wouldn't really accomplish my dreams, I suppose. I'd have to cancel grad school to accomodate treatment. Or, if I ignored treatment entirely, would I really be able to afford grad school? Or, for that matter, would it even make sense?
So, I'd settle for a job in the here and now. Instead of learning graphics programming, AI, and general video game programming, I'd focus on more practical (in-demand) skills such as database programming, and network programming. That type of programming is actually a bit easier for me, so I'd be able to be marketable relatively soon.
So, I'd get a low-paying programming job. Which would be great, for a time... but then the illness would present a problem. Treatment may have to be intensified, and I'd probably be unable to work and go on disability or something.
At this time, I'd feel like I have to contribute to society somehow. I mean, I haven't had my programming job long enough to make real substantial developments that would benefit many. So, maybe I'd start writing a novel... or composing a piece of music... something to leave behind.
Too bad I'm infertile and didn't have enough time to become financially capable of starting a family. That's always been my primary goal in life. A meaningful career I love and enjoy comes in second. To lose both... sucks.
Given that possibility, how should I act now?
Anyhow, I'll stop there. That's my career/goals daydream, I also have a relationship one, but that's a bit more depressing. Then there's a bucket-list one, a cancer-survivor one, the ultra happy one, and more. I daydream a lot. Good or bad, these are my daydreams, and I'm not ashamed of them. I'm not trying to focus on the negative or anything, but this is what I'm thinking, and I promised to write what I'm thinking... And with the itching returning, I've been thinking about the negative possibilities.
On an entirely different note, there was a glitch in my re-admission process which caused it to be delayed by 5 days. And, as luck would have it, all the classes I need or that would be practical have been filled. So I'm waitlisted for all my classes -- yet more to stress about.
Hence the bad mood. Excuse me.
We drove all the way down to Stanford to find out that my infusion was scheduled for Sunday, not Saturday! Whoops! We were told, most recently, that the appointment was Saturday, but you've always got to double check everything... be ever vigilant with health care.
There was those times my cisplatin dose was less than required... and the countless times I've had to specify that it was Hodgkin's Lymphoma, not non-Hodgkins Lymphoma.
On another subject, my hair is starting to grow back quite rapidly. My head no longer feels smooth, but scruff -- the change is nice. And I've got my chin hairs back! Still... I don't like it. I want maintain my chemo intensity.
In addition, I had some trouble sleeping last night because I was itching furiously. Still, the itch persists. It's the all-too-familiar Hodgkin's coming back to taunt me and remind me that he's still there. Persistent little bugger.
Now, maybe it's because my spirits have been a bit low lately... But, with the itch coming back, it feels like all this has been for nothing. 8 months of small chemo; doing nothing but making the tumor more resistant to chemo. Bah.
Then, I always ask myself: What if the BMT doesn't kill the tumor? or... What if, after a successful BMT, the tumor returns?
I start to daydream about that possible future... I'd like to think I'd spend my last days bartending on the Galapagos islands, but that's not really me -- is it?
I'd probably jump from clinical study to clinical study, subjecting myself to all sorts of interesting drugs in order to extend life. Then there's be the last-ditch allogeneic (bone marrow from someone else) transplant.
I wouldn't really accomplish my dreams, I suppose. I'd have to cancel grad school to accomodate treatment. Or, if I ignored treatment entirely, would I really be able to afford grad school? Or, for that matter, would it even make sense?
So, I'd settle for a job in the here and now. Instead of learning graphics programming, AI, and general video game programming, I'd focus on more practical (in-demand) skills such as database programming, and network programming. That type of programming is actually a bit easier for me, so I'd be able to be marketable relatively soon.
So, I'd get a low-paying programming job. Which would be great, for a time... but then the illness would present a problem. Treatment may have to be intensified, and I'd probably be unable to work and go on disability or something.
At this time, I'd feel like I have to contribute to society somehow. I mean, I haven't had my programming job long enough to make real substantial developments that would benefit many. So, maybe I'd start writing a novel... or composing a piece of music... something to leave behind.
Too bad I'm infertile and didn't have enough time to become financially capable of starting a family. That's always been my primary goal in life. A meaningful career I love and enjoy comes in second. To lose both... sucks.
Given that possibility, how should I act now?
Anyhow, I'll stop there. That's my career/goals daydream, I also have a relationship one, but that's a bit more depressing. Then there's a bucket-list one, a cancer-survivor one, the ultra happy one, and more. I daydream a lot. Good or bad, these are my daydreams, and I'm not ashamed of them. I'm not trying to focus on the negative or anything, but this is what I'm thinking, and I promised to write what I'm thinking... And with the itching returning, I've been thinking about the negative possibilities.
On an entirely different note, there was a glitch in my re-admission process which caused it to be delayed by 5 days. And, as luck would have it, all the classes I need or that would be practical have been filled. So I'm waitlisted for all my classes -- yet more to stress about.
Hence the bad mood. Excuse me.
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!~
Wednesday, October 15, 2008
[10-15-08] Birthday Day
[10:58pm]
Today I did nothing... it was all I had hoped it would be. Nothing by conventional standards, that is: I played my new video game and read a little fantasy fiction.
In other words, I've turned into a slacker. It's a bit annoying, in fact. A few days ago, I sat in front of my computer with the intent to learn something and progress in skills essential to my career path. I couldn't motivate myself to do so.
Under normal circumstances, it is difficult to delay gratification for future goals. In my circumstances... well, I'd rather wait for a job interview before I buy a new business suit. That money could be used for fun, instead!
Regardless, I am becoming more adept at being a slacker. Sounds strange, huh? I mean, how hard is it to be lazy? Actually, it was quite distressing at first. I felt this huge pressure to accomplish things. Not to mention the enormous guilt attached to myself when I fail to accomplish those things. Then, there's the conquest of boredom: one needs to keep oneself constantly entertained... all those extra hours of the day.
I remember this time, after finals, when I found myself scraping off sticker adhesive off of my dorm door. I was moving out and I had to leave the dorm in pristine condition. However, I was doing this immediately after my last final (In perhaps my most difficult set of finals ever). I recall setting my backpack next to my door and truly enjoying removing that adhesive... with a blissful sense of freedom.
My point is that anything can seem fun when you've spent 100% of your time on work. I didn't have time to eat or socialize or anything during those finals.
Now, with all the spare time in the world, the equation works in reverse. One becomes extra picky about the quality of the television shows that the watch, the video games that they play, or the books that they read -- with more supply, comes higher standards.
So conquering boredom can be difficult at times.
Fortunately, I've encountered an exception book to read and an exception game to play. So I'm good... for now :P
But, of course, I'm not going to hole myself up! Wednesdays aren't opportune for birthday celebrations -- there'll be fun on Saturday.
Today I did nothing... it was all I had hoped it would be. Nothing by conventional standards, that is: I played my new video game and read a little fantasy fiction.
In other words, I've turned into a slacker. It's a bit annoying, in fact. A few days ago, I sat in front of my computer with the intent to learn something and progress in skills essential to my career path. I couldn't motivate myself to do so.
Under normal circumstances, it is difficult to delay gratification for future goals. In my circumstances... well, I'd rather wait for a job interview before I buy a new business suit. That money could be used for fun, instead!
Regardless, I am becoming more adept at being a slacker. Sounds strange, huh? I mean, how hard is it to be lazy? Actually, it was quite distressing at first. I felt this huge pressure to accomplish things. Not to mention the enormous guilt attached to myself when I fail to accomplish those things. Then, there's the conquest of boredom: one needs to keep oneself constantly entertained... all those extra hours of the day.
I remember this time, after finals, when I found myself scraping off sticker adhesive off of my dorm door. I was moving out and I had to leave the dorm in pristine condition. However, I was doing this immediately after my last final (In perhaps my most difficult set of finals ever). I recall setting my backpack next to my door and truly enjoying removing that adhesive... with a blissful sense of freedom.
My point is that anything can seem fun when you've spent 100% of your time on work. I didn't have time to eat or socialize or anything during those finals.
Now, with all the spare time in the world, the equation works in reverse. One becomes extra picky about the quality of the television shows that the watch, the video games that they play, or the books that they read -- with more supply, comes higher standards.
So conquering boredom can be difficult at times.
Fortunately, I've encountered an exception book to read and an exception game to play. So I'm good... for now :P
But, of course, I'm not going to hole myself up! Wednesdays aren't opportune for birthday celebrations -- there'll be fun on Saturday.
Monday, October 13, 2008
[10-13-08] Eek!
[1:34pm]
Eek! How'd I manage to miss my 10-11-08 post? Sorry about that! It's hard to maintain routine when you're away from home. And I've been away from home...
I just got back a few hours ago. First, I spent the weekend with Liz in Berkeley, then a day at my sister's house.
Sometime last Thursday I realized two things: 1: I have enough energy to do things again! Including driving my motorcycle to Berkeley. And 2: The energy probably wont last, so I better take advantage of it.
So, I drove to Berkeley and had a blast! Liz and I watched a few movies, ate some good food, had some good conversations, and rented a house! Yes, a *whole* house! It's a small house, of course, but total luxury for someone like me who is used to a 12'x12' dorm room. I even get an office and my own bathroom! :P Liz will move-in about a month before I do, since I'll probably be in Stanford until about Dec. 12th.
Then I'll move-in, get settled, and return to school yet again! Here's to being a productive member of society!
Speaking of which... time to slack off some more! I have my birthday in two days, then on the 17th I will return to Stanford for my pre-BMT appointment! Treatment starts on the 21st. Plus, my mom shows up on the 15th (from Kentucky)... so a lot of stuff is coming up!
I'm looking forward to more chemo. I mean, I've got millions of little hairs on my head now -- that's not cool! Now is not the time for cellular springtime -- it is Winter!
Eek! How'd I manage to miss my 10-11-08 post? Sorry about that! It's hard to maintain routine when you're away from home. And I've been away from home...
I just got back a few hours ago. First, I spent the weekend with Liz in Berkeley, then a day at my sister's house.
Sometime last Thursday I realized two things: 1: I have enough energy to do things again! Including driving my motorcycle to Berkeley. And 2: The energy probably wont last, so I better take advantage of it.
So, I drove to Berkeley and had a blast! Liz and I watched a few movies, ate some good food, had some good conversations, and rented a house! Yes, a *whole* house! It's a small house, of course, but total luxury for someone like me who is used to a 12'x12' dorm room. I even get an office and my own bathroom! :P Liz will move-in about a month before I do, since I'll probably be in Stanford until about Dec. 12th.
Then I'll move-in, get settled, and return to school yet again! Here's to being a productive member of society!
Speaking of which... time to slack off some more! I have my birthday in two days, then on the 17th I will return to Stanford for my pre-BMT appointment! Treatment starts on the 21st. Plus, my mom shows up on the 15th (from Kentucky)... so a lot of stuff is coming up!
I'm looking forward to more chemo. I mean, I've got millions of little hairs on my head now -- that's not cool! Now is not the time for cellular springtime -- it is Winter!
Thursday, October 9, 2008
[10-09-08] The Austin Pain Scale
[10:40pm]
I've been spending the day cataloging my video game collection. What is the average rating? What is the genre? Is it multiplayer? I am preparing. Like a squirrel gathering acorns, I am saving my games for the winter ahead of me.
Then, I think back to how Barbara said how I liked to "quantify the subjective." It's true; I do. In fact, I've been doing it since I was like 5 or so. I've always annoyed people by incessantly asking for a "favorite," "which would win", or a "top five." Kinda like that guy on High-Fidelity.
Maybe I'll post a few of my neurotic lists, sometime. :P
Anyhow, back to the conversation with Barbara... We began discussing this after a nurse looked at me skeptically when I described my status on the pain scale (due to Neupogen back pain). Yes, the pain scale, again.
I obsess, I know. But it's such a perfect example: level of pain seems like such a subjective experience! There's no pain indicators attached to our heads or pain meters that we can attach to our brain stem. In addition, the nurses and doctors place such importance on the number that you give them. Naturally, I can't resist the challenge to quantify this.
Back to the nurse. So I told her that I had a pain rating of 5 and she looked at me like I just picked my nose. How *dare* she question my objectivity! I then commented to Barbara, "If only she realized how much thought I put into accurately providing my pain rating."
I then thought about actually writing it out. So, here it is:
The pain scale is on an integer scale of 0-10, with nothing more than faces to assist in the self assessment.
Although there are many different scales, this is the one I see the most in California hospitals. So, here's the criteria I use:
Pain 0: No Pain.
Pain 1: Detectable Pain. However, it is not sufficient enough to do anything about it. It is neither annoying or distracting. If a Tylenol and a glass of water was 2 feet away, you wouldn't take it.
Pain 2: Annoying Pain. You would take the Tylenol, but would have no problem watching TV or browsing the web. Not sufficient to distract you from your at-rest activities.
Pain 3: Distracting Pain. You would really like some medication at this point. If the Tylenol isn't near, this is where you'd start digging through your bathroom cabinet. Why not? You can't really enjoy watching TV, and reading a book is out of the question... This pain needs to be solved. Sleep would be possible at this level, but difficult.
Pain 4: Sleepless Pain. Medication is needed. Over-the-counter medications may dull the pain a little, but they wouldn't really help -- Vicodin would be nice. Sleep is very, very difficult at this level. Imagine not falling to sleep for at least three hours, then waking up every 30 minutes due to pain. At this level, I'd say getting 2.5 hours total of scattered sleep in a period of 8 hours is likely. (The pain scale, to me is a bit like the Richter scale: moving from 2 to 3 is a bigger step than moving from 1 to 2, and so on.)
Pain 5: Fidgety Pain. Narcotic medication is mandatory. If a doctor recommends Tylenol, then you should request a new doctor. If you are at home, without narcotic pain meds, then you'd probably start pondering the pain relief given by getting incredibly drunk or repeatedly banging your head against the wall. We're not in ER territory, but the pain is severe enough to cause you to constantly reposition yourself in an effort to reduce the pain -- fidgeting. Sleep is downright impossible.
Pain 6: Frantic Pain. Narcotics would help; Morphine would probably be best. If I were at home, then I'd consider going to the ER. It is a bit difficult to speak properly, due to abrupt spikes/stabs/pulses in the pain. You cannot stay still; you need relief.
Pain 7: Physiological Pain 1. Morphine is mandatory; go to ER at this level. This is where the pain is painfully obvious to doctors on a physiological level. Breathing and speaking become erratic, due to abrupt spikes/stabs/pulses in the pain. Envision grunting. Your pulse is way up.
Pain 8: Physiological Pain 2. Morphine may help slightly; something stronger may be best. All the previous physiological symptoms, but more so. Visibly trembling/shaking.
Pain 9: Physiological Pain 3. Something stronger than morphine is mandatory. All the previous physiological symptoms, but more so.
Pain 10: Fantasy Pain. The most pain you've ever experienced, or could fathom experiencing.
Ah, I love to quantify.
I've been spending the day cataloging my video game collection. What is the average rating? What is the genre? Is it multiplayer? I am preparing. Like a squirrel gathering acorns, I am saving my games for the winter ahead of me.
Then, I think back to how Barbara said how I liked to "quantify the subjective." It's true; I do. In fact, I've been doing it since I was like 5 or so. I've always annoyed people by incessantly asking for a "favorite," "which would win", or a "top five." Kinda like that guy on High-Fidelity.
Maybe I'll post a few of my neurotic lists, sometime. :P
Anyhow, back to the conversation with Barbara... We began discussing this after a nurse looked at me skeptically when I described my status on the pain scale (due to Neupogen back pain). Yes, the pain scale, again.
I obsess, I know. But it's such a perfect example: level of pain seems like such a subjective experience! There's no pain indicators attached to our heads or pain meters that we can attach to our brain stem. In addition, the nurses and doctors place such importance on the number that you give them. Naturally, I can't resist the challenge to quantify this.
Back to the nurse. So I told her that I had a pain rating of 5 and she looked at me like I just picked my nose. How *dare* she question my objectivity! I then commented to Barbara, "If only she realized how much thought I put into accurately providing my pain rating."
I then thought about actually writing it out. So, here it is:
The pain scale is on an integer scale of 0-10, with nothing more than faces to assist in the self assessment.
Although there are many different scales, this is the one I see the most in California hospitals. So, here's the criteria I use:
Pain 0: No Pain.
Pain 1: Detectable Pain. However, it is not sufficient enough to do anything about it. It is neither annoying or distracting. If a Tylenol and a glass of water was 2 feet away, you wouldn't take it.
Pain 2: Annoying Pain. You would take the Tylenol, but would have no problem watching TV or browsing the web. Not sufficient to distract you from your at-rest activities.
Pain 3: Distracting Pain. You would really like some medication at this point. If the Tylenol isn't near, this is where you'd start digging through your bathroom cabinet. Why not? You can't really enjoy watching TV, and reading a book is out of the question... This pain needs to be solved. Sleep would be possible at this level, but difficult.
Pain 4: Sleepless Pain. Medication is needed. Over-the-counter medications may dull the pain a little, but they wouldn't really help -- Vicodin would be nice. Sleep is very, very difficult at this level. Imagine not falling to sleep for at least three hours, then waking up every 30 minutes due to pain. At this level, I'd say getting 2.5 hours total of scattered sleep in a period of 8 hours is likely. (The pain scale, to me is a bit like the Richter scale: moving from 2 to 3 is a bigger step than moving from 1 to 2, and so on.)
Pain 5: Fidgety Pain. Narcotic medication is mandatory. If a doctor recommends Tylenol, then you should request a new doctor. If you are at home, without narcotic pain meds, then you'd probably start pondering the pain relief given by getting incredibly drunk or repeatedly banging your head against the wall. We're not in ER territory, but the pain is severe enough to cause you to constantly reposition yourself in an effort to reduce the pain -- fidgeting. Sleep is downright impossible.
Pain 6: Frantic Pain. Narcotics would help; Morphine would probably be best. If I were at home, then I'd consider going to the ER. It is a bit difficult to speak properly, due to abrupt spikes/stabs/pulses in the pain. You cannot stay still; you need relief.
Pain 7: Physiological Pain 1. Morphine is mandatory; go to ER at this level. This is where the pain is painfully obvious to doctors on a physiological level. Breathing and speaking become erratic, due to abrupt spikes/stabs/pulses in the pain. Envision grunting. Your pulse is way up.
Pain 8: Physiological Pain 2. Morphine may help slightly; something stronger may be best. All the previous physiological symptoms, but more so. Visibly trembling/shaking.
Pain 9: Physiological Pain 3. Something stronger than morphine is mandatory. All the previous physiological symptoms, but more so.
Pain 10: Fantasy Pain. The most pain you've ever experienced, or could fathom experiencing.
Ah, I love to quantify.
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.
Friday, September 19, 2008
[9-19-08] Night Cough = Delayed Chemo?
[10:53pm]
This morning, my Stanford nurse called with a warning: Monday's Cytoxan could be delayed further if I continued to have an irregular chest x-ray.
With a night cough that has lasted for over a week despite antibiotics, I am growing increasingly concerned that there might actually be a troubling new diagnosis ahead. Even if there isn't, it doesn't seem to be going away, and I don't like the possibility of delaying chemo further. I understand the implications of reducing chemo-intensity and I don't like it.
Fighting cancer is such a stressful occupation. Sometimes I wish I didn't have to call nurses, schedule appointments, wait for return calls, and panic about impending test results. It would be nice to just chill. Or maybe work full-time -- a forced distraction would be nice... video games and the internet can only encompass so much time... responsibility creeps in.
Anyhow, I'm still isolated on the boat. It's going to be a big project getting this place prepared for post-cytoxan. Still, I can't delay the chemo even further due to illness -- that'd be devastating. Liz has a fever this weekend, so I can't see her either. I'm really bummed about that -- I was really looking forward to seeing her. Damn cancer.
Bah.
As for the catheter, it is really creepy injecting Heparin into a tube leading directly into your heart. Really freaky. You don't want any air bubbles! And don't forget to clamp the tube shut! The prospect of me forgetting something like that...
Well, at least I'm getting used to it.
This morning, my Stanford nurse called with a warning: Monday's Cytoxan could be delayed further if I continued to have an irregular chest x-ray.
With a night cough that has lasted for over a week despite antibiotics, I am growing increasingly concerned that there might actually be a troubling new diagnosis ahead. Even if there isn't, it doesn't seem to be going away, and I don't like the possibility of delaying chemo further. I understand the implications of reducing chemo-intensity and I don't like it.
Fighting cancer is such a stressful occupation. Sometimes I wish I didn't have to call nurses, schedule appointments, wait for return calls, and panic about impending test results. It would be nice to just chill. Or maybe work full-time -- a forced distraction would be nice... video games and the internet can only encompass so much time... responsibility creeps in.
Anyhow, I'm still isolated on the boat. It's going to be a big project getting this place prepared for post-cytoxan. Still, I can't delay the chemo even further due to illness -- that'd be devastating. Liz has a fever this weekend, so I can't see her either. I'm really bummed about that -- I was really looking forward to seeing her. Damn cancer.
Bah.
As for the catheter, it is really creepy injecting Heparin into a tube leading directly into your heart. Really freaky. You don't want any air bubbles! And don't forget to clamp the tube shut! The prospect of me forgetting something like that...
Well, at least I'm getting used to it.
Thursday, September 18, 2008
[9-18-08] Hickman Catheter Placement #2
[11:29am]
It was quite a different experience to have a procedure done in a teaching hospital. Still, it wasn't like what you'd expect to see in an episode of "Scrubs" or "House." There weren't a bunch of bumbling interns, and residents too busy dating one another to worry about the patients. It was actually quite serious there.
However, that doesn't mean that everything went perfectly. My nurse had trouble putting the IV into my right hand, so she asked for help. It was quite disconcerting to have another nurse demonstrate the proper method while I sit there quietly. At one point, it went something like this: "Feel this vein? Like this. Still don't? Ok, try this. Here, feel right here. No? Ok, well you can at least see it, right?" Quite disconcerting.
Then there is the surgery itself. After having myriad medical procedures performed on myself, I believe that I am somewhat capable of evaluating them. Let me say this: Stanford may be the world's best place to be for a lymphoma BMT, but consider getting your catheter placed elsewhere. Okay, that's not a totally fair assessment. First, it looks like the catheter was placed just fine. Second, I can't judge an institution based on a single doctor.
My problem was that the procedure itself was painful. I had to constantly nag the doctor that what he was doing was painful. At first, he was receptive, but eventually I got the impression that he started to find my complaints annoying. Either that, or he believed that there was no possible way I could be feeling any pain with the amount of Fentanyl that he had administered; that I may have been faking pain to get more pain medication or something.
A couple of things he said before the procedure:
1: The only pain you will feel is from the lidocaine injections (local anesthetic).
2: You'll probably forget the whole thing.
Both were terribly wrong... I remember the whole procedure. I really think they didn't expect me to. At one point, I heard the doctor complain that my vein was being "stubborn." At another point, after I had complained, I recall the doctor telling the nurse to give me "the rest of the Versed", and that they "might as well not waste it." I'm not quite sure what this means (I had a blue sheet blocking my vision), but perhaps I am allocated a fixed amount of medication for a procedure? As far as I know, Versed is what makes you forget the procedure -- the Fentanyl is for pain. Anyhow, it's over now. Still, my point is that I remember my other two procedures (one, a port placement) with conscious sedation -- I hardly felt any pain at all. So why the pain this time?
After the procedure, Barbara and I headed to the ENT appointment. She stuck this long tube with a camera attached to it... through my nose and down my throat. I loved how, before the procedure, she commented, "You've been subjected to so much, that this'll be a piece of cake for you." She was right; it was.
Anyhow, she concluded that I was fine. So, good news there.
The bad news is that, due to my cough, everything in my BMT schedule has been delayed a week. I should be enjoying a Cytoxan martini right now, but that's been delayed until Monday... which causes a delay in everything else by a full week. So, no outpatient conditioning chemo until Oct. 21st.
Oh well. I've got a busy schedule! I'm just about to head to an appointment with a local oncologist (so that I can get labs in Santa Cruz). But first, I have to figure out how to work this darn catheter. I want a shower!
It was quite a different experience to have a procedure done in a teaching hospital. Still, it wasn't like what you'd expect to see in an episode of "Scrubs" or "House." There weren't a bunch of bumbling interns, and residents too busy dating one another to worry about the patients. It was actually quite serious there.
However, that doesn't mean that everything went perfectly. My nurse had trouble putting the IV into my right hand, so she asked for help. It was quite disconcerting to have another nurse demonstrate the proper method while I sit there quietly. At one point, it went something like this: "Feel this vein? Like this. Still don't? Ok, try this. Here, feel right here. No? Ok, well you can at least see it, right?" Quite disconcerting.
Then there is the surgery itself. After having myriad medical procedures performed on myself, I believe that I am somewhat capable of evaluating them. Let me say this: Stanford may be the world's best place to be for a lymphoma BMT, but consider getting your catheter placed elsewhere. Okay, that's not a totally fair assessment. First, it looks like the catheter was placed just fine. Second, I can't judge an institution based on a single doctor.
My problem was that the procedure itself was painful. I had to constantly nag the doctor that what he was doing was painful. At first, he was receptive, but eventually I got the impression that he started to find my complaints annoying. Either that, or he believed that there was no possible way I could be feeling any pain with the amount of Fentanyl that he had administered; that I may have been faking pain to get more pain medication or something.
A couple of things he said before the procedure:
1: The only pain you will feel is from the lidocaine injections (local anesthetic).
2: You'll probably forget the whole thing.
Both were terribly wrong... I remember the whole procedure. I really think they didn't expect me to. At one point, I heard the doctor complain that my vein was being "stubborn." At another point, after I had complained, I recall the doctor telling the nurse to give me "the rest of the Versed", and that they "might as well not waste it." I'm not quite sure what this means (I had a blue sheet blocking my vision), but perhaps I am allocated a fixed amount of medication for a procedure? As far as I know, Versed is what makes you forget the procedure -- the Fentanyl is for pain. Anyhow, it's over now. Still, my point is that I remember my other two procedures (one, a port placement) with conscious sedation -- I hardly felt any pain at all. So why the pain this time?
After the procedure, Barbara and I headed to the ENT appointment. She stuck this long tube with a camera attached to it... through my nose and down my throat. I loved how, before the procedure, she commented, "You've been subjected to so much, that this'll be a piece of cake for you." She was right; it was.
Anyhow, she concluded that I was fine. So, good news there.
The bad news is that, due to my cough, everything in my BMT schedule has been delayed a week. I should be enjoying a Cytoxan martini right now, but that's been delayed until Monday... which causes a delay in everything else by a full week. So, no outpatient conditioning chemo until Oct. 21st.
Oh well. I've got a busy schedule! I'm just about to head to an appointment with a local oncologist (so that I can get labs in Santa Cruz). But first, I have to figure out how to work this darn catheter. I want a shower!
Sunday, September 14, 2008
[9-14-08] The Infamous Chemo-Fart
[7:10pm]
For some reason, I haven't seen it on any list of side-effects. I haven't read about it online, or in other blogs... but I know it exists.
There was this one blog... where a nurse conspicuously asked the blogger, "How are you farting?"
I believe this is because the chemotherapy damages the gastrointestinal tract, causing some food to remain partially undigested. This causes excess gas.
It is difficult to admit, but I have experienced this as well. In fact, I noticed it as soon as the second month of Stanford V. It's not just a few extra "toots" here and there... I'm talking cancel-a-date-so-I-can-go-home-and-fart-all-evening type fart. Holding it in can be quite uncomfortable... especially without reprieve for hours.
Eventually, one afflicted with the dreaded Chemo-Fart learns to adjust. You may notice them "going to the bathroom" quite often, without flushing. Outside, they may occasionally walk quite a good distance from you, or even disappear for moments entirely. This is normal.
Anyhow, the reason I bring this up is twofold:
1> No one ever talks about it
2> I'm about to begin BMT
Basically, during the crummy parts of my inpatient stuff, I imagine I'm not going to relish the idea of unplugging the IV-Pole and hiding in the bathroom to fart. I'm probably going to be sick and miserable, and holding in farts isn't going to help me feel better. So, in the form of a public service announcement, Days -4 to 14 are "fart without guilt days."
People visiting me are welcome to clothespin their nose (though chemo-farts seem to be with little odor), or I can issue a verbal warning, such as "pull my finger." :P
Oh, boy. I mentioned this to Dan a while back, and he makes it a point of farting in myself and others, and saying something loud like, "Whoaaa! Those Chemo-Farts sure pack a wallop, Austin."
*ahem*
On another note, tomorrow starts the first day of Stanford BMT week! It begins with an appointment with my doctor!
For some reason, I haven't seen it on any list of side-effects. I haven't read about it online, or in other blogs... but I know it exists.
There was this one blog... where a nurse conspicuously asked the blogger, "How are you farting?"
I believe this is because the chemotherapy damages the gastrointestinal tract, causing some food to remain partially undigested. This causes excess gas.
It is difficult to admit, but I have experienced this as well. In fact, I noticed it as soon as the second month of Stanford V. It's not just a few extra "toots" here and there... I'm talking cancel-a-date-so-I-can-go-home-and-fart-all-evening type fart. Holding it in can be quite uncomfortable... especially without reprieve for hours.
Eventually, one afflicted with the dreaded Chemo-Fart learns to adjust. You may notice them "going to the bathroom" quite often, without flushing. Outside, they may occasionally walk quite a good distance from you, or even disappear for moments entirely. This is normal.
Anyhow, the reason I bring this up is twofold:
1> No one ever talks about it
2> I'm about to begin BMT
Basically, during the crummy parts of my inpatient stuff, I imagine I'm not going to relish the idea of unplugging the IV-Pole and hiding in the bathroom to fart. I'm probably going to be sick and miserable, and holding in farts isn't going to help me feel better. So, in the form of a public service announcement, Days -4 to 14 are "fart without guilt days."
People visiting me are welcome to clothespin their nose (though chemo-farts seem to be with little odor), or I can issue a verbal warning, such as "pull my finger." :P
Oh, boy. I mentioned this to Dan a while back, and he makes it a point of farting in myself and others, and saying something loud like, "Whoaaa! Those Chemo-Farts sure pack a wallop, Austin."
*ahem*
On another note, tomorrow starts the first day of Stanford BMT week! It begins with an appointment with my doctor!
Subscribe to:
Posts (Atom)
