(05/28/08)
Well I'm in the hospital again for another round of IE (Ifosfamide and Etoposide), but this time it's outpatient. This is day two, and I have to say there's something much more pleasant about being able to go home at night. When you do the regimen outpatient, you go to the Infusion Treatment Area (ITA) in the Cancer Center, where you still get to stay there for the whole day (around 8am to 6pm), but 1) things start on time, because the ITA is only open for so long, and 2) you get to go home to sleep, even though you have to wake up early and come in again the next day. Yesterday they gave me a huge dose of Benedryl, supposedly for nausea, but it totally knocked me out for the day. It's kind of nice in a way, like the sleeping time machine effect that you get on long car rides - "Oh, it's going to take so long to get there . . . doze doze doze . . . huh? whuh? We're there? Yippee!". Still, I think it was a little much, so I asked for a smaller dose today. Still zonked me out quite a bit though.
So, besides that, there have been a few updates to Alex in Cancer Treatment-ville. I talked with my doctor last week about when the next scans will be. Most likely we'll do them the week after we come back from Hawaii (June 9). I'll be having a chest CT and a pelvic MRI. The treatment will continue through to the end regardless of how those scans turn out, but hopefully they'll give reassurance that things are working. In other news, I had a medi-port installed on Friday. Here's the type I had put in: http://www.bardaccess.com/port-mri-dual.php. The medi-port is slightly more invasive to put in - it's a minor surgical procedure, but once it's in, it just stays under the skin until the nurses need to access it with a needle. They insert it into the chest just below the clavicle bone, in my case on the right side. It was a little daunting going into surgery again, but I was basically awake the whole time. Unfortunately, though, they had a sheet draped over my head so I couldn't really see what was going on. The worst part, as usual, was when they injected the numbing medication, which ironically stings quite a bit. After that I felt some pressure here and there, a little bit of pain, and the pull of threads as they stitched me up. The site's been pretty sore and a little bruised the past couple of days, but that should go away soon. They actually use what is essentially medical superglue to close the wound. It's nice because I can shower without covering it, and eventually I'll even be able to go swimming with it once the wound heals.
(5/30/08)
As I finish up this post it's now actually day 4 of Round 8 (woohoo!). The predictability of this outpatient treatment is great - I've been out of the clinic pretty reliably around 6pm every day this week. This is in contrast to the inpatient rounds, when I might check in at 10am and not start treatment til 7 or 8 pm. Right now, it's less than an hour to go!
Friday, May 30, 2008
Thursday, May 08, 2008
PICC-free and 7 of 17 done!
(5/8/08)
Note: This post was edited and pics added on May 14, 2008.
Hi all - I know my posts have become less frequent of late, but that's actually a good thing I think. I've been more active in the last couple weeks, and the treatments have been going a bit more smoothly than in the past. I think the side effects of radiation have finally worn off, and the respite after cycle 5 has seemed to do my body some good, even though it was frustrating to be delayed so much.
I finished my 7th cycle yesterday and am feeling in relatively good shape today. This was a VAC cycle, so only two days, but the A for adriomycin usually kicks my butt pretty hard. This time around it seems to have been okay, although the two days was more like three, due to delays in getting the drugs started. We checked in for admission around 1pm, but they didn't hang the chemo until about 9:30pm - something about the pharmacy doing interviews or some BS, then the drugs got sent to the wrong place (same thing happened last time), but finally things got started. Luckily I only have one more cycle of VAC with the A - after that it becomes VC and only an outpatient visit for one day (boy can't wait for that).
The next cycle is an IE, but I'm going to try and do it outpatient. That means getting up butt early every day for four days and sitting in the hospital for 10 hours, but there's an upside: they get things up and running a lot more quickly, since the infusion treatment area (ITA) closes at 5 or 6pm, and I get to go home and sleep in my own bed (and not to mention eat non-hospital food). Plus the ITA has nice big windows and is very well lit.
In other news, I'm PICC-free now! Since I've been more active of late, my doctor said it might be a good idea to get a medi-port installed instead. It requires a minor surgery, but it goes in the chest and is under the skin until they have to access it. That means, no more shower sleeve, no more weekly dressing changes, and I can go swimming and use my arms more freely than I have been able to. I've been planning on going to my friend Mike's wedding in Hawaii in June, so if all goes well, I'll actually be able to participate in some water activities (woohoo!). Not that just being in Hawaii and relaxing (under an umbrella) on the beach wouldn't be nice enough. . . Still, it's always good to have options.
My mom took some pictures when they took the PICC out last night - it was actually completely painless - they just cut the suture and pull it out. I'll post the pics when I get them...
Here are the pics... (BTW, apparently there are only a few people who can actually deal with removing PICCs, despite the fact that it doesn't seem to require much more than the ability to use a pair of scissors to snip the suture and use your fingers to pull the thing out. None of the nurses on the floor were able/certified to do this, so they had to call in the "crisis nurse", who apparently wanders around the hospital solving crises.)
Pulling off the dressing.
PICC with no dressing.
Pulling out the PICC.
The removed PICC!!!
No more PICC! (Yes, I'm smiling on the inside.)
Note: This post was edited and pics added on May 14, 2008.
Hi all - I know my posts have become less frequent of late, but that's actually a good thing I think. I've been more active in the last couple weeks, and the treatments have been going a bit more smoothly than in the past. I think the side effects of radiation have finally worn off, and the respite after cycle 5 has seemed to do my body some good, even though it was frustrating to be delayed so much.
I finished my 7th cycle yesterday and am feeling in relatively good shape today. This was a VAC cycle, so only two days, but the A for adriomycin usually kicks my butt pretty hard. This time around it seems to have been okay, although the two days was more like three, due to delays in getting the drugs started. We checked in for admission around 1pm, but they didn't hang the chemo until about 9:30pm - something about the pharmacy doing interviews or some BS, then the drugs got sent to the wrong place (same thing happened last time), but finally things got started. Luckily I only have one more cycle of VAC with the A - after that it becomes VC and only an outpatient visit for one day (boy can't wait for that).
The next cycle is an IE, but I'm going to try and do it outpatient. That means getting up butt early every day for four days and sitting in the hospital for 10 hours, but there's an upside: they get things up and running a lot more quickly, since the infusion treatment area (ITA) closes at 5 or 6pm, and I get to go home and sleep in my own bed (and not to mention eat non-hospital food). Plus the ITA has nice big windows and is very well lit.
In other news, I'm PICC-free now! Since I've been more active of late, my doctor said it might be a good idea to get a medi-port installed instead. It requires a minor surgery, but it goes in the chest and is under the skin until they have to access it. That means, no more shower sleeve, no more weekly dressing changes, and I can go swimming and use my arms more freely than I have been able to. I've been planning on going to my friend Mike's wedding in Hawaii in June, so if all goes well, I'll actually be able to participate in some water activities (woohoo!). Not that just being in Hawaii and relaxing (under an umbrella) on the beach wouldn't be nice enough. . . Still, it's always good to have options.
My mom took some pictures when they took the PICC out last night - it was actually completely painless - they just cut the suture and pull it out. I'll post the pics when I get them...
Here are the pics... (BTW, apparently there are only a few people who can actually deal with removing PICCs, despite the fact that it doesn't seem to require much more than the ability to use a pair of scissors to snip the suture and use your fingers to pull the thing out. None of the nurses on the floor were able/certified to do this, so they had to call in the "crisis nurse", who apparently wanders around the hospital solving crises.)
Pulling off the dressing.
PICC with no dressing.
Pulling out the PICC.
The removed PICC!!!
No more PICC! (Yes, I'm smiling on the inside.)Thursday, April 17, 2008
Back on Track (in glorious boredom)
(4/17/08 - did you file your taxes? Oops, too late now! Well, unless you filed for an extension, you cheeky monkey.)
Well here I am again, finally. Back in the hospital. My white cell counts were off the charts (high end) on Monday because of the neupogen shots I'd been taking, but I guess that's okay, because they know there were plenty of precursor cells to produce them. If there were only a few precursor cells or something else was going on with my bone marrow, we might be singing a different tune, but for now it's "Oh, I'm so bored in the hospital" (a little known ditty by an obscure but popular motown group in the 60's). On the upside, I've got a very friendly roommate this time around, so we've been chatting quite a bit. Also, a steady stream of visitors helps a lot (hint, hint).
Well, just one more day. . .
Well here I am again, finally. Back in the hospital. My white cell counts were off the charts (high end) on Monday because of the neupogen shots I'd been taking, but I guess that's okay, because they know there were plenty of precursor cells to produce them. If there were only a few precursor cells or something else was going on with my bone marrow, we might be singing a different tune, but for now it's "Oh, I'm so bored in the hospital" (a little known ditty by an obscure but popular motown group in the 60's). On the upside, I've got a very friendly roommate this time around, so we've been chatting quite a bit. Also, a steady stream of visitors helps a lot (hint, hint).
Well, just one more day. . .
Thursday, April 10, 2008
All Clear on the Bone Marrow Front!
(4/10/08)
Woohoo!* The results came back and my bone marrow is perfectly fine and healthy. All the precursor cells are there, but I guess they just need some stimulation. I'll be taking neupogen shots for the next three days to get the marrow factories working again, but I hopefully should be all clear to go in for treatment next week (knock on wood!).
I was a bit bummed the past couple of days, even though I wasn't thaaat worried (not true for the fam, though). My low counts made some sort of sense, given all that's happened in the previous couple of weeks, without it being due to some new anomaly. There's always that pesky glimmer of doubt, though - the one that constantly says, "Yes, yes, it should be because of this that and the other, but what if...?" So, yes, I'm definitely feeling relief at this news. Whew...
* By the way, have you seen the new Washington Mutual ads? They insist upon spelling this word, "Whoohoo", or some such nonsense. what's the deal with the extra "h"? It seems someone thinks that's the correct spelling, but my two minutes of searching on the internet has not produced an explanation. The original song featured in Kill Bill, Vol. 1 and in the Vonage commercials was spelled, "Woo Hoo", but that was also by a Japanese band - and we all know how the Japanese like to butcher English (check out: www.engrish.com). Regardless, I still stand by my spelling, gosh darn it.
Woohoo!* The results came back and my bone marrow is perfectly fine and healthy. All the precursor cells are there, but I guess they just need some stimulation. I'll be taking neupogen shots for the next three days to get the marrow factories working again, but I hopefully should be all clear to go in for treatment next week (knock on wood!).
I was a bit bummed the past couple of days, even though I wasn't thaaat worried (not true for the fam, though). My low counts made some sort of sense, given all that's happened in the previous couple of weeks, without it being due to some new anomaly. There's always that pesky glimmer of doubt, though - the one that constantly says, "Yes, yes, it should be because of this that and the other, but what if...?" So, yes, I'm definitely feeling relief at this news. Whew...
* By the way, have you seen the new Washington Mutual ads? They insist upon spelling this word, "Whoohoo", or some such nonsense. what's the deal with the extra "h"? It seems someone thinks that's the correct spelling, but my two minutes of searching on the internet has not produced an explanation. The original song featured in Kill Bill, Vol. 1 and in the Vonage commercials was spelled, "Woo Hoo", but that was also by a Japanese band - and we all know how the Japanese like to butcher English (check out: www.engrish.com). Regardless, I still stand by my spelling, gosh darn it.
Tuesday, April 08, 2008
Delays Raising Brows
(4/8/08)
I'm starting to feel like a broken record - "counts too low, counts too low. . . " This week they were even a little lower, 940, down from 1050 (course, that's probably within the error range of the neutrophil test). It's a bit of a cause for worry, so I had a bone marrow biopsy yesterday (ouch!) to check for any badness in the white cell production factories. Once we see what that shows, I guess we'll have a little bit more of a plan for what to do. My doctor thinks it's probably just taking the marrow a long time to recover from the combination of radiation, chemo, and two infections (zoster and then the random neutropenic fever afterwards), but I guess it's hard to speculate. I feel kinda frustrated, but this is supposedly "normal", meaning that it's definitely happened before to other folks who have gone through this treatment protocol.
On another note, I think my eyebrows are thinning out. I wonder if they'll go away completely. The hair on my head seems to come and go a little bit, but there's been a constant sparse fuzz there.
I'm starting to feel like a broken record - "counts too low, counts too low. . . " This week they were even a little lower, 940, down from 1050 (course, that's probably within the error range of the neutrophil test). It's a bit of a cause for worry, so I had a bone marrow biopsy yesterday (ouch!) to check for any badness in the white cell production factories. Once we see what that shows, I guess we'll have a little bit more of a plan for what to do. My doctor thinks it's probably just taking the marrow a long time to recover from the combination of radiation, chemo, and two infections (zoster and then the random neutropenic fever afterwards), but I guess it's hard to speculate. I feel kinda frustrated, but this is supposedly "normal", meaning that it's definitely happened before to other folks who have gone through this treatment protocol.
On another note, I think my eyebrows are thinning out. I wonder if they'll go away completely. The hair on my head seems to come and go a little bit, but there's been a constant sparse fuzz there.
Friday, April 04, 2008
Still ain't there
(4/4/08)
Well, I went in on Monday again, only to be told my counts were still too low. But it's not like they came up and just weren't high enough; they were actually about the same level as last Wednesday (1050 instead of 1040). Again the docs said there's nothing to really do except wait. Probably due to radiation and chemo combined, my bone marrow is just being sluggish. I've had some friends tell me that over-exercising can actually bring the counts down, so I guess I've been taking it mostly easy this week (though I did go climbing on Tues, and to Tai Chi on Wed). Of course there's other info that says regular moderate exercise brings the counts up. . . And then there's nutritional advice - some people say animal products reduce the ability of your body to produce natural killer (NK) cells, so we should all be more vegetarian. Then there's the mysterious-but-possibly-based-in-truth Chinese medicine advice, which says you should eat certain foods like frog legs (which I did do this week) to boost your immunity.
I think what gets me the most is the uncertainty and, being of a relatively scientific mind, the lack of data on a lot of this stuff. I suppose part of the problem is that the body is so complicated that even if there were tons of data on this and that, there's no guarantee that it would apply to me as an individual. Plus, there's no guarantee that the studies are controlled enough to yield a true result. I guess that's why every week the news tells us something else is either great for us or wrong for us or will turn our skin purple with pink polka dots, and then a year later that thing is in the opposite category. Ugh. It's endlessly frustrating.
Well, I went in on Monday again, only to be told my counts were still too low. But it's not like they came up and just weren't high enough; they were actually about the same level as last Wednesday (1050 instead of 1040). Again the docs said there's nothing to really do except wait. Probably due to radiation and chemo combined, my bone marrow is just being sluggish. I've had some friends tell me that over-exercising can actually bring the counts down, so I guess I've been taking it mostly easy this week (though I did go climbing on Tues, and to Tai Chi on Wed). Of course there's other info that says regular moderate exercise brings the counts up. . . And then there's nutritional advice - some people say animal products reduce the ability of your body to produce natural killer (NK) cells, so we should all be more vegetarian. Then there's the mysterious-but-possibly-based-in-truth Chinese medicine advice, which says you should eat certain foods like frog legs (which I did do this week) to boost your immunity.
I think what gets me the most is the uncertainty and, being of a relatively scientific mind, the lack of data on a lot of this stuff. I suppose part of the problem is that the body is so complicated that even if there were tons of data on this and that, there's no guarantee that it would apply to me as an individual. Plus, there's no guarantee that the studies are controlled enough to yield a true result. I guess that's why every week the news tells us something else is either great for us or wrong for us or will turn our skin purple with pink polka dots, and then a year later that thing is in the opposite category. Ugh. It's endlessly frustrating.
Wednesday, March 26, 2008
2 days ain't good enough
(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.
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.
Subscribe to:
Comments (Atom)
