(3/26/08)
Well, it turns out two days isn't good enough to get the counts up. In fact, my neutrophils were a little lower (1040, from 1220). Seems to me like there aren't enough data points to really know what the neutrophils do in the interim between chemo cycles. Apparently they like to bounce around a bit before coming back up. . . The doctor doesn't seem to think physical activity/lack of sleep affects things too much, so there's basically not much I can do other than wait, wait, wait.
Oh, and there was a problem with the last post (part of it got cut off), so I went back and fixed the ending. Anyhow, just a short note this time. Guess we'll try again on Monday.
Wednesday, March 26, 2008
Tuesday, March 25, 2008
Well well well. . .
(3/25/08)
Well, folks, I finally got out of the hospital two Saturdays ago, and I basically laid around the house for a couple days while my leg got slowly less painful. By Wednesday I could walk pretty well again, so since then I've been trying to do as much as fun stuff possible. A couple high school friends are in town, and we've been traipsing around the area. A little rock climbing, a little karaoke, a little bit of running around on the rocky beaches in SF and almost getting poison oak (cross yer fingers for us), some ice cream crepes in Japan town, bocce ball in Campbell . . . All in all it's been a good few days.
I was supposed to go in for treatment yesterday (Monday), but my total neutrophils were a little low (1200 - they can treat me at 1500). I'm going to try again tomorrow to get in, but I guess I'm not holding my breath. It's again the mixed blessing of well, I get to spend a couple more days feeling good, but I don't get the treatment in. . .
Update on my lung nodules
I did finally get a chest CT last week, and fortunately or unfortunately, the lung nodules are still there. They've supposedly gotten smaller (the largest is 3mm, used to be 4mm I think), but they're still there, which could mean a couple things. It seems to me like the resolution of the CT probably isn't good enough to distinguish 1mm. My doctor thinks they're probably just random specks of something, possibly just some inflammation, but the fact is we don't really know. If they are malignant, the chemo should have wiped them out by now. We can't biopsy them, since they're so small, and so there's no real way to know what they are. I guess we can hope for the best, which is that they're not malignant, and the disease has not metastasized beyond the pesky butt bump. More uncertainty, but I guess that's par for the course in this situation . . .
Well, folks, I finally got out of the hospital two Saturdays ago, and I basically laid around the house for a couple days while my leg got slowly less painful. By Wednesday I could walk pretty well again, so since then I've been trying to do as much as fun stuff possible. A couple high school friends are in town, and we've been traipsing around the area. A little rock climbing, a little karaoke, a little bit of running around on the rocky beaches in SF and almost getting poison oak (cross yer fingers for us), some ice cream crepes in Japan town, bocce ball in Campbell . . . All in all it's been a good few days.
I was supposed to go in for treatment yesterday (Monday), but my total neutrophils were a little low (1200 - they can treat me at 1500). I'm going to try again tomorrow to get in, but I guess I'm not holding my breath. It's again the mixed blessing of well, I get to spend a couple more days feeling good, but I don't get the treatment in. . .
Update on my lung nodules
I did finally get a chest CT last week, and fortunately or unfortunately, the lung nodules are still there. They've supposedly gotten smaller (the largest is 3mm, used to be 4mm I think), but they're still there, which could mean a couple things. It seems to me like the resolution of the CT probably isn't good enough to distinguish 1mm. My doctor thinks they're probably just random specks of something, possibly just some inflammation, but the fact is we don't really know. If they are malignant, the chemo should have wiped them out by now. We can't biopsy them, since they're so small, and so there's no real way to know what they are. I guess we can hope for the best, which is that they're not malignant, and the disease has not metastasized beyond the pesky butt bump. More uncertainty, but I guess that's par for the course in this situation . . .
Thursday, March 13, 2008
It's burnin' up in here
(3/13/08)
Well I had a nice day and a half at home, and now I'm back in the hospital again. Man, this is getting ridiculous. I started having a high fever yesterday (102.3 F) and had to come into the emergency room. Luckily the on-call oncology doc (Whew! Say that one three times fast) called ahead and I was actually roomed pretty quickly. Plus, because of the zoster and potentially low blood counts, they had to isolate me, and I ended up in a pediatric room. Normally I guess this doesn't mean much, but at Stanford it seems to mean you get sweet diggs over the cold, sterile, and boring adult side. The room had a TV with normal TV, games, on-demand movies, and some other stuff that was less exciting. Plus the computer actually was accessible and allowed you to get onto the internet. The last time I was in an emergency room, there wasn't much more than the standard bed and sink in the room (well, plus all the doctor gadgets on the walls, of course).
They came in and did the bloodwork pretty quickly, and then we had to wait for the results. In the meantime, it was Shrek 3 and The Incredibles (true, the movies were all kid-friendly, but I happen to love cartoons/animation). The ED docs had specific instructions from oncology on what to do with me, depending on what my neutrophil count was (neutrophils are the white blood cells that help to fight off infection, according to my limited medical knowledge):
a) < 500 - get admitted for IV antibiotics and antiviral drugs
b) 500-1500 - go home with oral antibiotics
c) 1500+ - go home
Of course, the answer was a), and here I am. The docs think I'll need to stay here for a couple days until my counts come back up; then typically the fevers go away and things should be relatively "normal." Since I have to stay in the same room (usually I can go out into the hall at least and walk around), let's hope I don't go too crazy...
Well I had a nice day and a half at home, and now I'm back in the hospital again. Man, this is getting ridiculous. I started having a high fever yesterday (102.3 F) and had to come into the emergency room. Luckily the on-call oncology doc (Whew! Say that one three times fast) called ahead and I was actually roomed pretty quickly. Plus, because of the zoster and potentially low blood counts, they had to isolate me, and I ended up in a pediatric room. Normally I guess this doesn't mean much, but at Stanford it seems to mean you get sweet diggs over the cold, sterile, and boring adult side. The room had a TV with normal TV, games, on-demand movies, and some other stuff that was less exciting. Plus the computer actually was accessible and allowed you to get onto the internet. The last time I was in an emergency room, there wasn't much more than the standard bed and sink in the room (well, plus all the doctor gadgets on the walls, of course).
They came in and did the bloodwork pretty quickly, and then we had to wait for the results. In the meantime, it was Shrek 3 and The Incredibles (true, the movies were all kid-friendly, but I happen to love cartoons/animation). The ED docs had specific instructions from oncology on what to do with me, depending on what my neutrophil count was (neutrophils are the white blood cells that help to fight off infection, according to my limited medical knowledge):
a) < 500 - get admitted for IV antibiotics and antiviral drugs
b) 500-1500 - go home with oral antibiotics
c) 1500+ - go home
Of course, the answer was a), and here I am. The docs think I'll need to stay here for a couple days until my counts come back up; then typically the fevers go away and things should be relatively "normal." Since I have to stay in the same room (usually I can go out into the hall at least and walk around), let's hope I don't go too crazy...
Tuesday, March 11, 2008
Wha?! The Shingles?
(3/11/08)
So, just when you think things should be smooth sailing from here. . . Radiation's over, the effects are mostly gone, and each cycle of chemo seems to be easier to handle - what could possibly go wrong? That's right - what could go wrong is you could get the shingles, otherwise known as herpes zoster or just zoster. I've certainly heard of the shingles, but I had no idea what it was until I was heartily introduced to it a couple days ago. I guess I always thought it was some nasty disease that was pretty much irrelevant for most people, like scurvy or something. As it turns out, it is a nasty disease that's pretty much irrelevant for most people - unless of course, you happen to be immuno-suppressed, like, say, someone going through chemotherapy.
What's zoster?
Zoster is caused by the same virus as the one that leads to chickenpox, so basically everyone who has had chickenpox is slightly at risk. Apparently, after you have chickenpox, the virus actually stays in your body along the nerves in the spinal cord, but it stays dormant unless your immune system goes down for some reason. Then it can show up, attack a nerve cluster and form a blistery rash. Some people just get the rash; some people also get pretty severe nerve pain (Ooh! Ooh! That's me! That's me!). Mine is down my left leg, but luckily it seems to have stayed localized. The pain is definitely positional, and it's worst when I'm standing or walking around. Apparently, sometimes the pain hangs around long after the rash has gone away (yippee!), but let's not get ahead of ourselves here.
How I got the shingles
I first noticed something weird on Thursday. I had just come back from chemo (VAC cycle #3 of 5 total so far) on Wednesday and was feeling fairly nauseated, tired, and just blah. Then I woke up Thursday morning with a stiff left leg - that seemed odd. I thought I had just been lying around too much and managed to contort my leg in some weird position that it didn't like. I tried stretching it a bit, but it didn't seem to help too much. The next day I felt a little worse, and there were these two little patches of rash on my leg. Saturday I went for a walk, still thinking it was just muscle tightness or something, and hoping that getting the legs working would help it go away. No such luck. Finally by Sunday it had morphed from stiffness to actual pain, and I called the on-call oncology doctor to see what he thought. He said I could wait and see if it got better/worse, or I could come in that day - eventually, at the behest of the fam, I chose the latter. The doc thought it could just be a skin infection (cellulitis) or it could be zoster, but the latter would explain the associated pain better. He gave me antibiotics (Keflex for cellulitis) and antiviral drugs (Valtrex for the zoster) to take for both possibilities.
By Monday morning the pain was getting really bad. My temp had spiked during the night and I had to hobble out of bed. Standing for long enough to use the bathroom was almost unbearable. My normal oncology doc wanted to see me to follow up, and when she did, she decided to admit me to the hospital for a couple of days of IV antiviral drugs. The IV drugs would be more effective than the oral meds I was taking. To her and Jan (the nurse practitioner who works with Dr. J in the clinic), it looked like it might be spreading beyond the nerve cluster in my leg, which could potentially mean it would spread all over my body and become "disseminated zoster". Ooh, fun.
The saga of getting a room
So Dr. J decided I should be admitted at, oh, around 11:30am yesterday, but they needed to wait to find a private room for me, you know, because of my celebrity status. No, actually, while you have zoster you're supposed to stay away from pregnant women, kids under 2-3, and anyone who is immuno-suppressed, for fear you'll give them either zoster or chickenpox. It turns out that the oncology clinic - where I was - and the main hospital - where I was going - happen to have a lot of the latter group of people - that is, sick people. So, what that meant was, while I was waiting for a room to open up in the main hospital, I had to stay confined to that exam room. In fact, they were going to have to "close the room down" after I left. Not only that, but if I went to use the restroom they would have to close that down as well. So basically, they gave me a urinal instead and my mom and I waited in the room. And waited. And waited. Luckily she was there and could go out and get me some food/drink while we were waiting. Then my sister came and dropped off some stuff for me to have in the hospital, and still we waited. I lay down on the too-small exam table for a bit and took a little nap. . . and we waited.
Finally, four hours later, things started moving, sort of. "Oh the room is almost ready - the patient is being discharged." Then, fifteen minutes later: "Oh, the patient's still in the room, but he/she is leaving soon." Then, "Oh, the patient has left, but the room is still dirty and needs to be cleaned." And then, "Oh, the room is still being cleaned."
So finally it's getting close to 5pm and Dr. J is both frustrated with the lack of response from the patient ward and concerned that transport services will shut down before I can be taken over to the main hospital. She decides to send me over there directly, bypassing the normal step of going to the admitting desk. Two volunteers from the cancer center show up with a wheelchair to take me over. At the patient ward, we're greeted by the grouchiest person I've ever seen at the hospital - she starts going off about how we were supposed to go to admitting first, and the room wasn't ready yet, it was still being cleaned, and how she told the people at the cancer center that the room wasn't ready, and there's no waiting room in that ward, so there's nowhere for them to put us and blah blah blah, all in this super nasty tone, like my mom or I, the sick guy, were somehow to blame for the horrible day this woman seemed to be having. The nurses who were gathered around were very apologetic and diffused the situation pretty quickly, and within a few minutes they put me in a different room that had just been cleaned. Apparently the volunteers who brought me over were appalled at this woman's demeanor, and the Concierge services desk called me today to get feedback on that experience. Hopefully that woman will get a stern talking-to as a result.
Crusting over
So after three doses of IV antiviral drugs (Acyclovir) overnight, they decided my lesions had crusted over enough for me to get the heck out of Dodge. Laura, the nurse practitioner who follows my case every time I'm in the hospital (she's awesome), said that since my white counts were dropping because of the chemo, there's a chance the zoster could get worse. But both she and the attending doctor thought that chance was low enough to send me home. So here I am at home, hoping that things will crust over in the next couple days, and hoping even more that this aweful pain will go away. I'm taking a painkiller specifically for nerve pain, Neurontin, and that seems to be helping a bit. I'm also back on the Valtrex that the on-call doc originally prescribed this weekend. Apparently, for some reason Valtrex in oral form is also better at getting rid of the nerve pain associated with zoster than the Acyclovir they gave me in IV form in the hospital, so that's also a slight plus over staying in the hospital longer.
Anyhow, another bump in the road for yours truly. So much for the straightforwardness of the rest of the chemo cycles. I guess one good thing is that I get this zoster thing out of the way now rather than have to deal with it later (it's pretty rare for it to come back, although the nerve pain does linger in some patients). Luckily, I have a great team of people taking care of me at home and in the hospital (well, except for the grouchy lady), so that certainly helps. Gotta hope for the best!
So, just when you think things should be smooth sailing from here. . . Radiation's over, the effects are mostly gone, and each cycle of chemo seems to be easier to handle - what could possibly go wrong? That's right - what could go wrong is you could get the shingles, otherwise known as herpes zoster or just zoster. I've certainly heard of the shingles, but I had no idea what it was until I was heartily introduced to it a couple days ago. I guess I always thought it was some nasty disease that was pretty much irrelevant for most people, like scurvy or something. As it turns out, it is a nasty disease that's pretty much irrelevant for most people - unless of course, you happen to be immuno-suppressed, like, say, someone going through chemotherapy.
What's zoster?
Zoster is caused by the same virus as the one that leads to chickenpox, so basically everyone who has had chickenpox is slightly at risk. Apparently, after you have chickenpox, the virus actually stays in your body along the nerves in the spinal cord, but it stays dormant unless your immune system goes down for some reason. Then it can show up, attack a nerve cluster and form a blistery rash. Some people just get the rash; some people also get pretty severe nerve pain (Ooh! Ooh! That's me! That's me!). Mine is down my left leg, but luckily it seems to have stayed localized. The pain is definitely positional, and it's worst when I'm standing or walking around. Apparently, sometimes the pain hangs around long after the rash has gone away (yippee!), but let's not get ahead of ourselves here.
How I got the shingles
I first noticed something weird on Thursday. I had just come back from chemo (VAC cycle #3 of 5 total so far) on Wednesday and was feeling fairly nauseated, tired, and just blah. Then I woke up Thursday morning with a stiff left leg - that seemed odd. I thought I had just been lying around too much and managed to contort my leg in some weird position that it didn't like. I tried stretching it a bit, but it didn't seem to help too much. The next day I felt a little worse, and there were these two little patches of rash on my leg. Saturday I went for a walk, still thinking it was just muscle tightness or something, and hoping that getting the legs working would help it go away. No such luck. Finally by Sunday it had morphed from stiffness to actual pain, and I called the on-call oncology doctor to see what he thought. He said I could wait and see if it got better/worse, or I could come in that day - eventually, at the behest of the fam, I chose the latter. The doc thought it could just be a skin infection (cellulitis) or it could be zoster, but the latter would explain the associated pain better. He gave me antibiotics (Keflex for cellulitis) and antiviral drugs (Valtrex for the zoster) to take for both possibilities.
By Monday morning the pain was getting really bad. My temp had spiked during the night and I had to hobble out of bed. Standing for long enough to use the bathroom was almost unbearable. My normal oncology doc wanted to see me to follow up, and when she did, she decided to admit me to the hospital for a couple of days of IV antiviral drugs. The IV drugs would be more effective than the oral meds I was taking. To her and Jan (the nurse practitioner who works with Dr. J in the clinic), it looked like it might be spreading beyond the nerve cluster in my leg, which could potentially mean it would spread all over my body and become "disseminated zoster". Ooh, fun.
The saga of getting a room
So Dr. J decided I should be admitted at, oh, around 11:30am yesterday, but they needed to wait to find a private room for me, you know, because of my celebrity status. No, actually, while you have zoster you're supposed to stay away from pregnant women, kids under 2-3, and anyone who is immuno-suppressed, for fear you'll give them either zoster or chickenpox. It turns out that the oncology clinic - where I was - and the main hospital - where I was going - happen to have a lot of the latter group of people - that is, sick people. So, what that meant was, while I was waiting for a room to open up in the main hospital, I had to stay confined to that exam room. In fact, they were going to have to "close the room down" after I left. Not only that, but if I went to use the restroom they would have to close that down as well. So basically, they gave me a urinal instead and my mom and I waited in the room. And waited. And waited. Luckily she was there and could go out and get me some food/drink while we were waiting. Then my sister came and dropped off some stuff for me to have in the hospital, and still we waited. I lay down on the too-small exam table for a bit and took a little nap. . . and we waited.
Finally, four hours later, things started moving, sort of. "Oh the room is almost ready - the patient is being discharged." Then, fifteen minutes later: "Oh, the patient's still in the room, but he/she is leaving soon." Then, "Oh, the patient has left, but the room is still dirty and needs to be cleaned." And then, "Oh, the room is still being cleaned."
So finally it's getting close to 5pm and Dr. J is both frustrated with the lack of response from the patient ward and concerned that transport services will shut down before I can be taken over to the main hospital. She decides to send me over there directly, bypassing the normal step of going to the admitting desk. Two volunteers from the cancer center show up with a wheelchair to take me over. At the patient ward, we're greeted by the grouchiest person I've ever seen at the hospital - she starts going off about how we were supposed to go to admitting first, and the room wasn't ready yet, it was still being cleaned, and how she told the people at the cancer center that the room wasn't ready, and there's no waiting room in that ward, so there's nowhere for them to put us and blah blah blah, all in this super nasty tone, like my mom or I, the sick guy, were somehow to blame for the horrible day this woman seemed to be having. The nurses who were gathered around were very apologetic and diffused the situation pretty quickly, and within a few minutes they put me in a different room that had just been cleaned. Apparently the volunteers who brought me over were appalled at this woman's demeanor, and the Concierge services desk called me today to get feedback on that experience. Hopefully that woman will get a stern talking-to as a result.
Crusting over
So after three doses of IV antiviral drugs (Acyclovir) overnight, they decided my lesions had crusted over enough for me to get the heck out of Dodge. Laura, the nurse practitioner who follows my case every time I'm in the hospital (she's awesome), said that since my white counts were dropping because of the chemo, there's a chance the zoster could get worse. But both she and the attending doctor thought that chance was low enough to send me home. So here I am at home, hoping that things will crust over in the next couple days, and hoping even more that this aweful pain will go away. I'm taking a painkiller specifically for nerve pain, Neurontin, and that seems to be helping a bit. I'm also back on the Valtrex that the on-call doc originally prescribed this weekend. Apparently, for some reason Valtrex in oral form is also better at getting rid of the nerve pain associated with zoster than the Acyclovir they gave me in IV form in the hospital, so that's also a slight plus over staying in the hospital longer.
Anyhow, another bump in the road for yours truly. So much for the straightforwardness of the rest of the chemo cycles. I guess one good thing is that I get this zoster thing out of the way now rather than have to deal with it later (it's pretty rare for it to come back, although the nerve pain does linger in some patients). Luckily, I have a great team of people taking care of me at home and in the hospital (well, except for the grouchy lady), so that certainly helps. Gotta hope for the best!
Monday, March 03, 2008
Back in the Hole!
(3/3/08)
Well, my counts were pretty good today, so I guess the three units of blood helped some. Supposedly I should have felt better after the transfusion, but I didn't notice too much change. I guess my paleness went away - I also had a pretty active week, which may have had to do with the blood as well. Lessee, after spending the bulk of Monday and Tuesday getting my transfusions, I went to restorative yoga on Wed, tai chi on Wed night, had dinner with a friend after that, went climbing on Thursday night, spent the day on campus on Friday, saw "Juno" that night (great flick), had brunch on Sat, went to the Hiller Aviation Museum afterwards, went to Davis that night for dinner with a friend who was in town, and on Sun, had dim sum, went climbing and to a different yoga class (offered at the climbing gym). Whew!
Now I'm back in the hospital for a few days, getting the VAC (Vincristine/Adriamycin/Cyclophosphamide). For some reason, every time I come in as an in-patient, it takes FOREVER to get the chemo actually started. Today we got to the patient ward around 11 and they didn't start the chemo until almost 4pm. I guess they need to wait for the orders to come through and the pharmacy to mix the drugs and such. Still, it's kind of annoying that I come in here and have to sit around for hours. The nurse just hung my Adriamycin bag (around 5pm), so now I've got 48 hours to wait til I get out of here. Luckily, after five of these VAC cycles, I'll stop getting Adriamycin and this set of drugs will only take one day. The other set (IE - Ifosfamide/Etoposide) will still take 4 days, but I may move to out-patient for that one eventually. The out-patient schedule is fairly grueling, though - you basically have to come in at 7am every day for 12 hours. Still, I suspect it might be better than staying in the hospital. We'll see.
Well, my counts were pretty good today, so I guess the three units of blood helped some. Supposedly I should have felt better after the transfusion, but I didn't notice too much change. I guess my paleness went away - I also had a pretty active week, which may have had to do with the blood as well. Lessee, after spending the bulk of Monday and Tuesday getting my transfusions, I went to restorative yoga on Wed, tai chi on Wed night, had dinner with a friend after that, went climbing on Thursday night, spent the day on campus on Friday, saw "Juno" that night (great flick), had brunch on Sat, went to the Hiller Aviation Museum afterwards, went to Davis that night for dinner with a friend who was in town, and on Sun, had dim sum, went climbing and to a different yoga class (offered at the climbing gym). Whew!
Now I'm back in the hospital for a few days, getting the VAC (Vincristine/Adriamycin/Cyclophosphamide). For some reason, every time I come in as an in-patient, it takes FOREVER to get the chemo actually started. Today we got to the patient ward around 11 and they didn't start the chemo until almost 4pm. I guess they need to wait for the orders to come through and the pharmacy to mix the drugs and such. Still, it's kind of annoying that I come in here and have to sit around for hours. The nurse just hung my Adriamycin bag (around 5pm), so now I've got 48 hours to wait til I get out of here. Luckily, after five of these VAC cycles, I'll stop getting Adriamycin and this set of drugs will only take one day. The other set (IE - Ifosfamide/Etoposide) will still take 4 days, but I may move to out-patient for that one eventually. The out-patient schedule is fairly grueling, though - you basically have to come in at 7am every day for 12 hours. Still, I suspect it might be better than staying in the hospital. We'll see.
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