(7/25/08)
"There you are!"
"Do I know you?"
"No, but that's where you are, you're there!"
(12 points if you name this movie)
Well, you're there, and I'm here, here being the Stanford Cancer Center, in the infusion treatment area (ITA) to be specific, in Treatment Area C2 to be even more specific. And that all means. . . yup! My counts were good enough for treatment! Yay! My neutrophils were at 1.7 two days ago, so I was greenlit to go in yesterday and for the next four days (til Sunday). Again, it's sort of a mixed bag of celebration I suppose, since I do get to/have to spend the next four days sitting here for 10 hrs a day, but it's another step towards completion of this long haul. It's not so bad - I usually get my own room since I'm here all day, and the place is somehow more cheerful than the normal hospital. When you stay inpatient, the people there are usually all really sick: a lot of them are bedridden or barely mobile. Plus, as I think I've said before, it's just kind of aweful being there at night - it's noisy and uncomfortable and boring and lonely, and you wake up to a totally unappetizing breakfast.
Here in the ITA, some people are just here a couple hours, others the full day like me, but almost everyone walks in and walks out. There are big windows and plenty of daylight. The nurses are all very friendly and they seem a bit less stressed out than the inpatient folks.
Still, this round seems to be hitting me a little harder than the previous ones have. I felt pretty nauseated going home yesterday and I haven't been able to eat much. Maybe it's the fact that I had a bit of a break and was feeling pretty good, so the contrast is that much greater. I dunno.
Just gotta roll with it I guess, and take my meds on time.
Friday, July 25, 2008
Wednesday, July 16, 2008
White blood cells, where are you?
The search continues... (7/16/08)
Well, I felt a ton better after the blood transfusion last week, but apparently my white cells are still not cooperating. I went in for my appointment on Monday, and my absolute neutrophils were even lower than last week (0.68, down from 1.3). The baseline for treatment is 1.5, so something seems screwy. The current theory is that the cycle of neupogen maybe to blame. After each round of treatment I've been doing 14 days of neupogen shots to help stimulate the bone marrow to produce more white blood cells. The problem is that neupogen causes the white cells to shoot up in number, and so ideally we should wait until they come back down to a natural level before getting treatment. My doctor likes to use the analogy of factories. We've got bone marrow factories that produce red and white cells. Radiation and chemo tend to shut down those factories. The neupogen is supposed to stimulate the factories to produce, but it does so at an accelerated rate. I guess it's like bringing in a ton of extra workers to get the factory up and running again. Slowly while the extra workers are there, the normal workers get back up to speed. So the factories overproduce at first, and when the neupogen wears off, the factories come back down to their "normal" production level (not really normal, but normal enough to get treated with the next round of chemo!). The problem is that if you hit the factories with more chemo while they're up at their overproduction rate, you might be doing so before the natural level has come back up. You basically get rid of all the extra workers while the normal workers are not quite up to capacity yet. Because of the timing of my previous neupogen shots, it may have been that I was getting treatment during these artificially high production times, and the culmulative effect of overstressing the system ends up being that the white cell counts come way down, which ultimately means delays in treatment. This would explain why my previous few cycles have gone relatively smoothly in terms of timing, but it seems my body is now trying to play catch up.
In any case, we'll go in again next Wednesday to see if things have improved. It's super frustrating, but it's also very typical for this type of chemo regimen. Every time this happens, we ask, "Is there anything I can do differently?". But the reality is that it's the chemo and residual effects from radiation at work, and so no amount of eating differently or resting more or exercising more will really change things. Basically, there's nothing I can do, and that's the worst part. You just have to wait it out, and that makes you feel so powerless. The best thing I try and do is just continue with my life as much as possible. It's this strange mix of feelings - part of me is excited by the extra week of freedom, but part of me just wants to get this thing over with. There's also the sinking feeling that more delays mean more chance for the cancer to fight back between rounds. I guess the flip side of that is, well, maybe the chemo and radiation have already done their work killing off the cancer cells, and the rest of this is just gravy. There's no way to know. . . urgh.
In other news, I've been doing better at the climbing wall these past couple of weeks. I think the extra blood really helped a lot. Reminds me of the Simpsons episode where Mr. Burns gets a transfusion of Bart's blood and is suddenly revitalized and energetic. I was able to do a bunch of climbs yesterday without feeling too tired, and I've noticed my energy during the day is back more or less to "normal". And to finish off the post, here are a few notes on what I've been up to:
Reading: The Ecology of Commerce, by Paul Hawken
Listening to: Zero 7, The Decemberists, Sara Bareilles (I know, cheesy poppy, but whatever), Flaming Lips, REM (of course), shuffled songs on my iPod
Playing: Super Mario Galaxy (sooo much fun!!)
Slowly working on: my thesis, slides for my defense
Pondering: some post-thesis work that will combine engineering, social benefit, and international development with education, clean tech, and/or medicine
Trying to get back into: Tai chi
Watching: Flight of the Conchords, So You Think You Can Dance, America's Best Dance Crew, Scrubs
Well, I felt a ton better after the blood transfusion last week, but apparently my white cells are still not cooperating. I went in for my appointment on Monday, and my absolute neutrophils were even lower than last week (0.68, down from 1.3). The baseline for treatment is 1.5, so something seems screwy. The current theory is that the cycle of neupogen maybe to blame. After each round of treatment I've been doing 14 days of neupogen shots to help stimulate the bone marrow to produce more white blood cells. The problem is that neupogen causes the white cells to shoot up in number, and so ideally we should wait until they come back down to a natural level before getting treatment. My doctor likes to use the analogy of factories. We've got bone marrow factories that produce red and white cells. Radiation and chemo tend to shut down those factories. The neupogen is supposed to stimulate the factories to produce, but it does so at an accelerated rate. I guess it's like bringing in a ton of extra workers to get the factory up and running again. Slowly while the extra workers are there, the normal workers get back up to speed. So the factories overproduce at first, and when the neupogen wears off, the factories come back down to their "normal" production level (not really normal, but normal enough to get treated with the next round of chemo!). The problem is that if you hit the factories with more chemo while they're up at their overproduction rate, you might be doing so before the natural level has come back up. You basically get rid of all the extra workers while the normal workers are not quite up to capacity yet. Because of the timing of my previous neupogen shots, it may have been that I was getting treatment during these artificially high production times, and the culmulative effect of overstressing the system ends up being that the white cell counts come way down, which ultimately means delays in treatment. This would explain why my previous few cycles have gone relatively smoothly in terms of timing, but it seems my body is now trying to play catch up.
In any case, we'll go in again next Wednesday to see if things have improved. It's super frustrating, but it's also very typical for this type of chemo regimen. Every time this happens, we ask, "Is there anything I can do differently?". But the reality is that it's the chemo and residual effects from radiation at work, and so no amount of eating differently or resting more or exercising more will really change things. Basically, there's nothing I can do, and that's the worst part. You just have to wait it out, and that makes you feel so powerless. The best thing I try and do is just continue with my life as much as possible. It's this strange mix of feelings - part of me is excited by the extra week of freedom, but part of me just wants to get this thing over with. There's also the sinking feeling that more delays mean more chance for the cancer to fight back between rounds. I guess the flip side of that is, well, maybe the chemo and radiation have already done their work killing off the cancer cells, and the rest of this is just gravy. There's no way to know. . . urgh.
In other news, I've been doing better at the climbing wall these past couple of weeks. I think the extra blood really helped a lot. Reminds me of the Simpsons episode where Mr. Burns gets a transfusion of Bart's blood and is suddenly revitalized and energetic. I was able to do a bunch of climbs yesterday without feeling too tired, and I've noticed my energy during the day is back more or less to "normal". And to finish off the post, here are a few notes on what I've been up to:
Reading: The Ecology of Commerce, by Paul Hawken
Listening to: Zero 7, The Decemberists, Sara Bareilles (I know, cheesy poppy, but whatever), Flaming Lips, REM (of course), shuffled songs on my iPod
Playing: Super Mario Galaxy (sooo much fun!!)
Slowly working on: my thesis, slides for my defense
Pondering: some post-thesis work that will combine engineering, social benefit, and international development with education, clean tech, and/or medicine
Trying to get back into: Tai chi
Watching: Flight of the Conchords, So You Think You Can Dance, America's Best Dance Crew, Scrubs
Tuesday, July 08, 2008
There will be blood. . . eventually
(7/8/08)
Hmmm. . . well I've been delayed again due to low white cell counts. Yesterday was a fun rigamaroll that had me marching around the cancer center trying to figure out some hospital craziness.
I showed up with my mom at about 9am to get my blood drawn. (Before each appointment I need to get my blood drawn so the doctor can see if my counts are high enough for me to be treated.) A simple thing, right? Not so much. First I went to the blood draw lab, but they didn't have my lab form. I usually get the form after my previous appointment, but I didn't have it this time for some reason. So, I went upstairs to the Infusion Treatment Area (ITA), where they do blood draws and outpatient infusions for people with central lines (either a PICC or a port like I have now). In my mind, since I had the port, I thought it'd be easier to get my blood drawn the old fashioned way (but you have to do this at the lab downstairs). So, instead of telling them I had a port, I told them I didn't have a PICC anymore and I wanted to get the lab form to go downstairs to the normal blood draw lab. I waited for a couple minutes and they told me they didn't have the lab form and to go downstairs to the clinic to get it.
So of course I did that, and another fun surprise awaited: there were no lab instructions because my insurance was listed as terminated as of June 23. What the frak? (BSG reference, anyone?) I got on the phone with the insurance company, and they said there was probably a glitch because Stanford didn't put me on the list of students continuing on for the summer, even though the university had already billed me for summer tuition and insurance. Luckily that was easy enough to fix, but it would take a couple days to get it in the system. Meanwhile, we had to wait around while the receptionist (who is exceedingly nice) called around to try and figure out how to deal with the situation. Finally she said I could just go upstairs to the ITA and they could do the blood draw.
Back up the stairs we went, but there were still problems. There was still nothing in the system. Somehow, though, once I told the guy behind the desk that I did indeed have a port, he said I could just wait there and they would get me in. By this time I had missed my 10am appointment, but since the clinic knew things had gotten a little mixed up, I was still able to see the doctor (they're used to this kind of thing I guess). I got my blood drawn, finally, through my port, and went back downstairs to wait to see the doctor.
We ended up waiting for a while in the examination room, and when the doctor came in the full blood results still weren't ready. Of course, when they were finally ready it turned out I couldn't be treated (absolute neutrophils were at 1.3, and they need to be at 1.5 to be treated). Also, my red cell counts were low, so I needed to show up the next day (today) to get a blood transfusion. This was not a huge surprise, since I've been feeling pretty tired the past couple of weeks. It was about 2pm by the time we got out, a good five hours after arriving.
Today was not a whole lot different. We showed up at the ITA at 8am, and first the nurse had trouble finding my orders. Then, it turned out they had to do a blood type check (i.e. draw more blood), and this would take up to (actually more than) two hours. So we went downstairs to the lobby area, where there are some nice cushy chairs, and I basically took a nap for two hours. Finally at about noon, the nurse called me back, and the blood came and we got started at about 12:30. I'm just finishing the first of two bags now, so two more hours and I'm outta here, probably at about 4:30 or 5pm. . . ah, a full day's work. If anyone was wondering how appointments could end up taking such a long time, wonder no more!
Hmmm. . . well I've been delayed again due to low white cell counts. Yesterday was a fun rigamaroll that had me marching around the cancer center trying to figure out some hospital craziness.
I showed up with my mom at about 9am to get my blood drawn. (Before each appointment I need to get my blood drawn so the doctor can see if my counts are high enough for me to be treated.) A simple thing, right? Not so much. First I went to the blood draw lab, but they didn't have my lab form. I usually get the form after my previous appointment, but I didn't have it this time for some reason. So, I went upstairs to the Infusion Treatment Area (ITA), where they do blood draws and outpatient infusions for people with central lines (either a PICC or a port like I have now). In my mind, since I had the port, I thought it'd be easier to get my blood drawn the old fashioned way (but you have to do this at the lab downstairs). So, instead of telling them I had a port, I told them I didn't have a PICC anymore and I wanted to get the lab form to go downstairs to the normal blood draw lab. I waited for a couple minutes and they told me they didn't have the lab form and to go downstairs to the clinic to get it.
So of course I did that, and another fun surprise awaited: there were no lab instructions because my insurance was listed as terminated as of June 23. What the frak? (BSG reference, anyone?) I got on the phone with the insurance company, and they said there was probably a glitch because Stanford didn't put me on the list of students continuing on for the summer, even though the university had already billed me for summer tuition and insurance. Luckily that was easy enough to fix, but it would take a couple days to get it in the system. Meanwhile, we had to wait around while the receptionist (who is exceedingly nice) called around to try and figure out how to deal with the situation. Finally she said I could just go upstairs to the ITA and they could do the blood draw.
Back up the stairs we went, but there were still problems. There was still nothing in the system. Somehow, though, once I told the guy behind the desk that I did indeed have a port, he said I could just wait there and they would get me in. By this time I had missed my 10am appointment, but since the clinic knew things had gotten a little mixed up, I was still able to see the doctor (they're used to this kind of thing I guess). I got my blood drawn, finally, through my port, and went back downstairs to wait to see the doctor.
We ended up waiting for a while in the examination room, and when the doctor came in the full blood results still weren't ready. Of course, when they were finally ready it turned out I couldn't be treated (absolute neutrophils were at 1.3, and they need to be at 1.5 to be treated). Also, my red cell counts were low, so I needed to show up the next day (today) to get a blood transfusion. This was not a huge surprise, since I've been feeling pretty tired the past couple of weeks. It was about 2pm by the time we got out, a good five hours after arriving.
Today was not a whole lot different. We showed up at the ITA at 8am, and first the nurse had trouble finding my orders. Then, it turned out they had to do a blood type check (i.e. draw more blood), and this would take up to (actually more than) two hours. So we went downstairs to the lobby area, where there are some nice cushy chairs, and I basically took a nap for two hours. Finally at about noon, the nurse called me back, and the blood came and we got started at about 12:30. I'm just finishing the first of two bags now, so two more hours and I'm outta here, probably at about 4:30 or 5pm. . . ah, a full day's work. If anyone was wondering how appointments could end up taking such a long time, wonder no more!
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