(12/30/08)
Well, folks, it's done. Over. Kaput. Finis. In the end, I didn't have to do the last cycle after all. I have been showing symptoms of bladder damage these past few cycles, and so my doctor decided that the risk of causing permanent damage outweighed any marginal benefit from finishing this last cycle. So when we got the lab results during my appointment yesterday, she said, "You know what? You're done." And that was it. I was a bit in shock, though I kind of suspected she might say this, given the symptoms I'd been having.
So, after more than a year of crap crap crap, I'm finally done, and right before the new year (I know, it's really just an arbitrary date, but I'll take it). I'll still have regular checkups for a while, and the longer I don't have disease the better the prognosis (although there's not enough data to actually give a number for prognosis). My doc says that they usually start counting from the time that you are disease-free, and for me she says this would probably be after my radiation treatment. I don't know that it really means that much, but by that rationale, I already have almost a year disease-free under my belt. Once I get to year five I can breathe much more easily.
For now, it's time to live for real again. . . WOOOOOOOOOHOOOOOOOOOOO!!!!!!!!!!
Tuesday, December 30, 2008
Thursday, December 18, 2008
The final countdown
One more to go!
(12/18/08)
I'm kind of in shock. This year has gone by so quickly, and now that I'm facing my last chemo treatment, I don't really know how to feel. Round 16 came and went last week, with the usual crappiness feeling for 2-2.5 days, and now I'm back up and running. I had a chat with my adviser last week about what it will take for me to defend and finish up. I've started the beginnings of thinking about what I'm going to do after I graduate. It's all very strange. This year, with all the starts and stops and interruptions, I've tried to get stuff done and get myself to feel productive, but I also definitely took it easy when I wanted to and for the most part prioritized fun, family, and friends. Still, the prospect of working hard for the final push is actually kind of appealing - having full energy to tackle my research and other things will be exciting.
My last cycle is on the 29th, so a just a couple days to recover from that and I'm home free! Aside from bimonthly checkups and semi-annual scans, I get to return to a normal-ish life. Better yet, I get to figure out what that means. It's pretty exciting, though a little daunting. And of course there's the heavy cloud of uncertainty - did it work? Was the triumvirate of surgery/chemo/radiation enough to thwart the bizarre rhabdo-beast? I have no idea. No one else does either. There's just not much data for young adults and this disease. In general, including kids, I've seen upwards of 80% cure rates posted. That's promising at least, but not entirely comforting.
Knowing more information isn't necessarily better, though. This year four of my good friends' moms have gotten breast cancer (one was a recurrence). One day, one of my research mentors pointed down the hall of offices in our building at the doors of all his colleagues whose families had been touched by breast cancer. There's tons of data on breast cancer, but all that does is give you more certain uncertainty. Once you're staged and the treatment is done, you may know exactly what chances you have, but that's rarely reassuring for the individual. There's always the lingering question - which group will I fall into? The never-have-to-face-this-again group, or the . . . other one? My mom, who is a statistician, is always skeptical of data. Even if there's a .0001% chance of something happening, if you are in that group, it's 100% your problem. Basically, it just sucks, no matter what.
It could be worse
During sophomore year of high school, I went through a really angsty phase where I would get super moody, sulk around, and play "Everybody Hurts" by REM incessantly (I know some of my friends are probably reading this and groaning with rolled eyes at the memory). Of course I still have moods now, but I like to think that they're, um, more sophisticated. In any case, people would always say, "I don't like that song - it's depressing." But to me, it's actually quite the opposite. To know that everyone suffers to some extent gives me some comfort - not in a sadistic, schaudenfraude sense, mind you, but in the sense that it means people live with pain all the time, and yet they find the strength and courage to move past it.
As a result of this mode of thinking, I often try to count to myself the numerous ways in which my situation could be worse. I try not to be too outlandish about it, but sometimes it does go there. I mean, I found the disease relatively early, so that's a plus. It hadn't spread to my bladder, so I get to pee in the normal way still. Definitely a plus. The little nodules in my lungs appear to not be metastasis after all, I'm lucky to be in a place where I can get top-notch medical care, etc., etc. I suppose this could seem depressing to some, but sometimes looking at all the bad things that could have happened makes the good things (or even just the lack of bad things) all the sweeter.
Anyhow, for now, I'm looking forward to a new, fresh year. . .
(12/18/08)
I'm kind of in shock. This year has gone by so quickly, and now that I'm facing my last chemo treatment, I don't really know how to feel. Round 16 came and went last week, with the usual crappiness feeling for 2-2.5 days, and now I'm back up and running. I had a chat with my adviser last week about what it will take for me to defend and finish up. I've started the beginnings of thinking about what I'm going to do after I graduate. It's all very strange. This year, with all the starts and stops and interruptions, I've tried to get stuff done and get myself to feel productive, but I also definitely took it easy when I wanted to and for the most part prioritized fun, family, and friends. Still, the prospect of working hard for the final push is actually kind of appealing - having full energy to tackle my research and other things will be exciting.
My last cycle is on the 29th, so a just a couple days to recover from that and I'm home free! Aside from bimonthly checkups and semi-annual scans, I get to return to a normal-ish life. Better yet, I get to figure out what that means. It's pretty exciting, though a little daunting. And of course there's the heavy cloud of uncertainty - did it work? Was the triumvirate of surgery/chemo/radiation enough to thwart the bizarre rhabdo-beast? I have no idea. No one else does either. There's just not much data for young adults and this disease. In general, including kids, I've seen upwards of 80% cure rates posted. That's promising at least, but not entirely comforting.
Knowing more information isn't necessarily better, though. This year four of my good friends' moms have gotten breast cancer (one was a recurrence). One day, one of my research mentors pointed down the hall of offices in our building at the doors of all his colleagues whose families had been touched by breast cancer. There's tons of data on breast cancer, but all that does is give you more certain uncertainty. Once you're staged and the treatment is done, you may know exactly what chances you have, but that's rarely reassuring for the individual. There's always the lingering question - which group will I fall into? The never-have-to-face-this-again group, or the . . . other one? My mom, who is a statistician, is always skeptical of data. Even if there's a .0001% chance of something happening, if you are in that group, it's 100% your problem. Basically, it just sucks, no matter what.
It could be worse
During sophomore year of high school, I went through a really angsty phase where I would get super moody, sulk around, and play "Everybody Hurts" by REM incessantly (I know some of my friends are probably reading this and groaning with rolled eyes at the memory). Of course I still have moods now, but I like to think that they're, um, more sophisticated. In any case, people would always say, "I don't like that song - it's depressing." But to me, it's actually quite the opposite. To know that everyone suffers to some extent gives me some comfort - not in a sadistic, schaudenfraude sense, mind you, but in the sense that it means people live with pain all the time, and yet they find the strength and courage to move past it.
As a result of this mode of thinking, I often try to count to myself the numerous ways in which my situation could be worse. I try not to be too outlandish about it, but sometimes it does go there. I mean, I found the disease relatively early, so that's a plus. It hadn't spread to my bladder, so I get to pee in the normal way still. Definitely a plus. The little nodules in my lungs appear to not be metastasis after all, I'm lucky to be in a place where I can get top-notch medical care, etc., etc. I suppose this could seem depressing to some, but sometimes looking at all the bad things that could have happened makes the good things (or even just the lack of bad things) all the sweeter.
Anyhow, for now, I'm looking forward to a new, fresh year. . .
Monday, November 17, 2008
Like cake
Serena cheering me through Cycle 15/17.
(11/17/08)
Numba 15 is done! It was like liquid cake, fed intravenously through my chest and bringing about a slight burning sensation in my nostrils. Okay, so the analogy doesn't work that well, but what I mean is, the day seemed to go by with few problems. I had to get poked three times in my double-lumen port, though - once in the morning to access one lumen for bloodwork, and then twice after my doctor's appointment before getting treatment, because the first needle was defective. No big deal, but we did determine that using the cold spray that they have does in fact help reduce the pain of inserting the needle (we did the first one without the spray and the second one with the spray. Normally I have to smear on this lidocaine cream half an hour beforehand to numb the area, but since I had done that before labs earlier in the day, it had worn off by the time I was getting treatment. Anywayz. . . ). I had a little bit of nausea after lunch, so I took an Ativan, and after claiming to my nurse Kyla that Ativan doesn't actually make me that sleepy, I promptly fell asleep for the rest of the afternoon until about 4pm. We got out of there pretty late, about 7:30pm, but I feel pretty good, relatively speaking. This was a Vincristine/Cyclophosphamide cycle, and it's been hit or miss since I dropped the Adriamycin. After the first one-day cycle I had, I went camping the next day and was relatively fine. I didn't feel perfect, but I was able to hike and wander around with no big problems. The second time I felt pretty crappy for a couple days after. We'll see what this one holds. Sometimes I think if I force myself to do something rather than lie around and feel crappy it might be better. Who knows.
In general, I'm still on track, thanks to the new timing schedule for my neupogen shots, and things are going pretty well. No lumps or bumps or humps or clumps anywhere. The latest scans show nothing in my pelvis, and the little lung nodules persist, indicating that they were probably not metastasis to begin with - a definite good sign. I've had some blood in my urine the past couple cycles, though, so the docs have upped my dose of Mesna, which Serena likes to say in the voice of Edna Mode from the Incredibles: "Mehhh-znah". Mesna acts as a bladder protectant, but apparently it's not been doing its job very well. Protect that bladder! Hopefully I won't have any significant toxicity issues, or I might not be able to finish off the last two cycles. I suppose it wouldn't be the worst thing - at this point in the protocol it's unclear as to whether these last two make a difference or not. Still, the big thing is. . . ONLY TWO MORE!!!
Psychologically, though, I'm cautiously optimistic. I've certainly had darker days (usually right before I begin a cycle I'm just in a bad mood - It's hard when you feel relatively normal and you know you have to go feel crappy for a couple days), but I think the worst of the uncertainty is yet to come. While you're getting treatment, you know that you're actively doing something. You have a plan, and a set of tasks that you need to accomplish. Once you're done treatment, you just have to wait and see. You go into surveillance mode and try and continue with your life, always wondering if the cancer will rear its ugly head again. I never thought I would be turning 30 with the prospect of this kind of uncertainty in my life. I'm sure it will hit me even harder when the treatment is done.
So, nice, vague question for the day: How do you deal with uncertainty in your life?
Here are some random pics to peruse while you're contemplating:
My cousin Monica had a baby girl in SF on Saturday. My mom and I went to visit on Sunday afternoon.
My mom holding her yet-to-be-named grand-niece. 
The newly expanded family: Monica, Jimmy (her husband), baby, and Sophie (their two-year old).
Monica with baby, Mom with Sophie, and me with bald baby-like head.Okay, now answer the question!!
Tuesday, November 11, 2008
Contemplating my prostate
(11/11/08)
A friend of mine was recently diagnosed with ovarian cancer and commented to me about how after the biopsy parts of her were now floating around the country for second opinions and what not. I guess I never thought about it, but it's true for me, too. There are chunks of my prostate in New York, Baltimore, San Francisco, and Stanford. Kind of a strange thought, eh?
In other news, the last cycle finished up without too much fanfare, except my last day was on Halloween, so there was a bit of excitement in the ITA with some of the nurses dressed up in costume. Also, my friend Blase showed up for a visit, as you can see in the pictures. He works over in the children's hospital next to Stanford and I'm sure had tons of fun with the kiddies (apparently they turn the hospital into a trick-or-treating extravaganza for a few hours during the day). The adult side was not quite as exciting, but there was a little bit more spirit than usual, so that was nice for the last day of my cycle. Only 3 more to go. . .
If I weren't holed up in the hospital, I would have been Avatar: The Last Airbender, but alas, the timing didn't quite work out. The alternative was to do as my friend PJ suggested and paint three holes on my head and be a bowling ball. In any case, I want more comments on the blog, so here's the question of the day: What were you for Halloween this year?
Look who dropped in!
Me and my puffy face
A friend of mine was recently diagnosed with ovarian cancer and commented to me about how after the biopsy parts of her were now floating around the country for second opinions and what not. I guess I never thought about it, but it's true for me, too. There are chunks of my prostate in New York, Baltimore, San Francisco, and Stanford. Kind of a strange thought, eh?
In other news, the last cycle finished up without too much fanfare, except my last day was on Halloween, so there was a bit of excitement in the ITA with some of the nurses dressed up in costume. Also, my friend Blase showed up for a visit, as you can see in the pictures. He works over in the children's hospital next to Stanford and I'm sure had tons of fun with the kiddies (apparently they turn the hospital into a trick-or-treating extravaganza for a few hours during the day). The adult side was not quite as exciting, but there was a little bit more spirit than usual, so that was nice for the last day of my cycle. Only 3 more to go. . .
If I weren't holed up in the hospital, I would have been Avatar: The Last Airbender, but alas, the timing didn't quite work out. The alternative was to do as my friend PJ suggested and paint three holes on my head and be a bowling ball. In any case, I want more comments on the blog, so here's the question of the day: What were you for Halloween this year?
Look who dropped in!
Me and my puffy faceWednesday, October 29, 2008
Phillies win!
(10/28/08)
Well, I guess in all honesty I'm a fair weather fan, but hey, I went to see one game when I was in Philadelphia, so that gives me some kind of street cred, right? I know who Mike Schmidt is - well, not what position he played, but . . . that's what Wikipedia's for, right? So anyhow, yay Phillies!! (Let's just ignore the fact that the Rays made huge mistakes in the 9th of game 3 and the first inning of game 6, which basically cost them the series).
Cycle 14
Okay, so down to the nitty gritty. Today was Day 2 of cycle 14 of 17. Nothing too new, although I had to make sure I got the correct premeds yesterday (they forgot to give me Aloxi, which is like Zofran but lasts over 3-5 days). Today I was just really tired and kind of napped on and off throughout the day. I did get a chance to catch up with a friend who I met when I first started this chemo last year. He has ewing's sarcoma and had just finished this chemo protocol when I started. Unfortunately he had a local recurrence recently, but he had surgery and will do a stem cell transplant after this new chemo cycle he's on. Hopefully that'll clear things up. Stay strong, Steve!
It's so difficult to have so much uncertainty about this whole ordeal. For me, there's no real data on this kind of cancer, especially not in someone my age, and it's similar for my friend. I guess it's good to know there's recourse after the first round, but of course you'd rather not have to go through it. For now, I guess it'll have to be good enough to get through this first (and hopefully last) bit. Only three more cycles to go!
Well, I guess in all honesty I'm a fair weather fan, but hey, I went to see one game when I was in Philadelphia, so that gives me some kind of street cred, right? I know who Mike Schmidt is - well, not what position he played, but . . . that's what Wikipedia's for, right? So anyhow, yay Phillies!! (Let's just ignore the fact that the Rays made huge mistakes in the 9th of game 3 and the first inning of game 6, which basically cost them the series).
Cycle 14
Okay, so down to the nitty gritty. Today was Day 2 of cycle 14 of 17. Nothing too new, although I had to make sure I got the correct premeds yesterday (they forgot to give me Aloxi, which is like Zofran but lasts over 3-5 days). Today I was just really tired and kind of napped on and off throughout the day. I did get a chance to catch up with a friend who I met when I first started this chemo last year. He has ewing's sarcoma and had just finished this chemo protocol when I started. Unfortunately he had a local recurrence recently, but he had surgery and will do a stem cell transplant after this new chemo cycle he's on. Hopefully that'll clear things up. Stay strong, Steve!
It's so difficult to have so much uncertainty about this whole ordeal. For me, there's no real data on this kind of cancer, especially not in someone my age, and it's similar for my friend. I guess it's good to know there's recourse after the first round, but of course you'd rather not have to go through it. For now, I guess it'll have to be good enough to get through this first (and hopefully last) bit. Only three more cycles to go!
Saturday, October 11, 2008
Don't you know about the bird?
(10/11/08)
I watched the Family Guy episode, "I Dream of Jesus", last night and laughed my butt off. I thought the first half was awesome - second half wasn't that great, but for some reason I thought Peter's "Surfin' Bird" dance was hilarious. I could see some people thinking it's just annoying, but I would humbly disagree. You can see it on Hulu if you missed it. Actually, the spoof of Dane Cook is pretty good, too (anyone actually think that guy is funny? If so, can you explain why?).
Anyhow, I finished number 13 on Monday (woohoo!). Just four more to go, but right now it's looking like I'll turn 30 before it's done. Not sure what's different, but this one seemed to really knock me down. Last time I had a one-day VC (Vincristine, Cyclophosphamide) cycle, I went off to King's Canyon that evening and did a 9-mile (though relatively flat) hike with everyone the next day. This time I was just really tired for the next few days, and even going out shopping for random things yesterday wore me out. I guess it could be psychological, or the cumulative effects of the chemo, or who knows? One definite difference is that this time we decided to delay the start of my 14 neupogen shots until today (usually I start them a day after treatment is done). That way, they'll finish closer to the time of my next treatment, which hopefully will keep me on track schedule-wise. Neupogen is supposed to boost my white cells mostly, which usually doesn't seem to correlate with my energy level, though, so I'm not sure why this round hit me so hard. I guess I could also be a little anemic (low red cells). That has definitely made me fatigued in the past.
Sometimes the scientist in me wants to get blood tests every day so I can track this sort of thing and find out what affects me when and how, but I guess then I'd have to get blood tests every day, and that would be kind of a drag. I guess in lieu of that I'll have to keep to the Wheel of Speculation (that's the wheel in my head that's like the Wheel of Fortune wheel except the money values are replaced by reasons for my low energy - you get the idea).
Friday, September 19, 2008
33 minutes
Day 4/4, Cycle 12/17
(9/19/08)
There's an episode of the new Battlestar Galactica show (I think it's the first one after the series intro) where the Cylons keep showing up to attack the human fleet every 33 minutes. As a result, everyone's all at their wits' ends with lack of sleep and exhaustion. I guess it's not quite the same, but with all the chemo and hydration they give me while I'm here, it feels like I'm up to the bathroom every 33 minutes, so even if I try to sleep through the whole day, it doesn't quite work out that way. I usually get some sleep in the morning, but then I'm mostly awake in the afternoon, which seems to drag on forever and ever. It's 3:55pm and I've got 3.5 more hours to go.
chugga chugga chugga chugga. . . . woo woo!
By the way, my friend's team is one of the top 25 finalists in the American Express Members' project. If you've got an AMEX card, I urge you to vote (pref for their project, Embrace - $25 Infant Incubator, but if you find another cause more worthy feel free to vote for that). Here's the link and a video from Embrace:
(9/19/08)
There's an episode of the new Battlestar Galactica show (I think it's the first one after the series intro) where the Cylons keep showing up to attack the human fleet every 33 minutes. As a result, everyone's all at their wits' ends with lack of sleep and exhaustion. I guess it's not quite the same, but with all the chemo and hydration they give me while I'm here, it feels like I'm up to the bathroom every 33 minutes, so even if I try to sleep through the whole day, it doesn't quite work out that way. I usually get some sleep in the morning, but then I'm mostly awake in the afternoon, which seems to drag on forever and ever. It's 3:55pm and I've got 3.5 more hours to go.
chugga chugga chugga chugga. . . . woo woo!
By the way, my friend's team is one of the top 25 finalists in the American Express Members' project. If you've got an AMEX card, I urge you to vote (pref for their project, Embrace - $25 Infant Incubator, but if you find another cause more worthy feel free to vote for that). Here's the link and a video from Embrace:
Saturday, September 13, 2008
Register to Vote!
(9/13/08)
Anyone else ready for this election to be over? Man, I can't even watch the news anymore. I guess the debates will be interesting. Anyway, if you're reading this and you're not registered to vote, go here now! Go ahead, I'll wait. . .
. . .
(doo doo dum dee dum)
. . .
Done? Cool. Well, I'm finished with my neupogen shots for the week (see previous post), and we'll see if I can go in for treatment after my appointment on Monday. I did wake up with some sores on my tongue today, but hopefully that doesn't mean anything other than my room is too dry. It's weird to be getting them now, though. Sometimes I think my body has some sort of weird Pavlovian response such that it starts to expect treatment before I'm even getting it. My energy level is better than it was earlier in the week, though, so that's a good sign, I think.
One other bump that we cleared this week. . . my bladder is A-OK. My doc said that a couple weeks ago when I had my cystoscopy, the urine sample they sent out looked "suspicious". The pathologists said I should be checked for signs of bladder cancer. The pathologists saw abnormal looking cells, but they also didn't know I had gotten radiation in that area and was undergoing chemo. My surgeon said the "suspicious" cells were likely due to radiation and chemo damage to my bladder and were nothing to worry about, but my oncologist wanted to do another sample just to check. So I did that on Monday and the results came back negative yesterday. They even went back and checked the old sample to make sure, and there was no sign of malignancy. I wasn't that worried about it, but my mom was, so anything that makes mom happy is definitely a good thing.
Some days I think back to when I had surgery, and though there are lingering long-term consequences, it's such a relief that I still have a fully functioning bladder and urinary tract. We have to hold on to things that we can be thankful for, and try to let go of pain and depressing thoughts as quickly as possible. But I guess both are easier said than done.
Anyone else ready for this election to be over? Man, I can't even watch the news anymore. I guess the debates will be interesting. Anyway, if you're reading this and you're not registered to vote, go here now! Go ahead, I'll wait. . .
. . .
(doo doo dum dee dum)
. . .
Done? Cool. Well, I'm finished with my neupogen shots for the week (see previous post), and we'll see if I can go in for treatment after my appointment on Monday. I did wake up with some sores on my tongue today, but hopefully that doesn't mean anything other than my room is too dry. It's weird to be getting them now, though. Sometimes I think my body has some sort of weird Pavlovian response such that it starts to expect treatment before I'm even getting it. My energy level is better than it was earlier in the week, though, so that's a good sign, I think.
One other bump that we cleared this week. . . my bladder is A-OK. My doc said that a couple weeks ago when I had my cystoscopy, the urine sample they sent out looked "suspicious". The pathologists said I should be checked for signs of bladder cancer. The pathologists saw abnormal looking cells, but they also didn't know I had gotten radiation in that area and was undergoing chemo. My surgeon said the "suspicious" cells were likely due to radiation and chemo damage to my bladder and were nothing to worry about, but my oncologist wanted to do another sample just to check. So I did that on Monday and the results came back negative yesterday. They even went back and checked the old sample to make sure, and there was no sign of malignancy. I wasn't that worried about it, but my mom was, so anything that makes mom happy is definitely a good thing.
Some days I think back to when I had surgery, and though there are lingering long-term consequences, it's such a relief that I still have a fully functioning bladder and urinary tract. We have to hold on to things that we can be thankful for, and try to let go of pain and depressing thoughts as quickly as possible. But I guess both are easier said than done.
Tuesday, September 09, 2008
Tired tired tired
(9/9/08)
Huh, I guess a year from now this day will have some significance (9/9/09). Any cultures where 9 is a lucky number? Well, as the title says, I've been kind of tired the past few days, more so than usual, unfortunately. I'm not really sure why, since my red cells are fine, but I guess it's just part of the process. Maybe it's because I haven't really done any exercise in a week or so. I've been trying to sleep more, but that just makes me feel more tired. Ugh.
Anyhow, I've been delayed again. . . Last week I had a doctor's appointment on Wednesday and was supposed to get treated on Friday, but my neutrophils were just barely too low (1.4 instead of 1.5, which is the cutoff). I took a few days to rest, but yesterday they were even lower (.98). On the one hand it makes you question the accuracy of the tests - is 1.4 really that much different from 1.5? How much do your absolute neutrophils fluctuate in a day? On the other hand, I guess they have a cutoff for a reason. Normally when I have been delayed, my doctor has wanted to wait to have my counts come back up on their own. I guess she's seen so many people get delayed lately that she's now recommending I take some more neupogen to help boost my counts back up. So, five more days of injections this week, and hopefully I'll be able to go for treatment next week. She's also talked to the doctors doing the rhabdo clinical trial and has decided to reduce my dose a little more this round; I'm already reduced to 80% but she's going to bump it down to 75%. Apparently that's as low as the rhabdo docs want to go, but hopefully it'll help me bounce back a little more quickly. I have to keep reminding myself that the effects of chemo are cumulative, and my doc is always quick to tell me I'm not alone in these delays. Ugh, it's just the waiting that's so awful.
Well on a happier note, here are some pics from my trip to NYC:
A quiet moment in St. Patrick's Cathedral
Mom at the MOMA. Unfortunately it was free admission that day, so it was packed.
Gathering for Anthony's very low-key but very sweet wedding ceremony at Brooklyn Bridge Park.
Anthony and Nolwenn.
The high school gang at the after-party.
Me, Jeff, and Anthony (middle school buddies) at the climbing wall.
Holly, me, and Jess (freshman dorm friends) at the Shake Shack in Madison Square Park.
Me and Manasi in Midtown.
Huh, I guess a year from now this day will have some significance (9/9/09). Any cultures where 9 is a lucky number? Well, as the title says, I've been kind of tired the past few days, more so than usual, unfortunately. I'm not really sure why, since my red cells are fine, but I guess it's just part of the process. Maybe it's because I haven't really done any exercise in a week or so. I've been trying to sleep more, but that just makes me feel more tired. Ugh.
Anyhow, I've been delayed again. . . Last week I had a doctor's appointment on Wednesday and was supposed to get treated on Friday, but my neutrophils were just barely too low (1.4 instead of 1.5, which is the cutoff). I took a few days to rest, but yesterday they were even lower (.98). On the one hand it makes you question the accuracy of the tests - is 1.4 really that much different from 1.5? How much do your absolute neutrophils fluctuate in a day? On the other hand, I guess they have a cutoff for a reason. Normally when I have been delayed, my doctor has wanted to wait to have my counts come back up on their own. I guess she's seen so many people get delayed lately that she's now recommending I take some more neupogen to help boost my counts back up. So, five more days of injections this week, and hopefully I'll be able to go for treatment next week. She's also talked to the doctors doing the rhabdo clinical trial and has decided to reduce my dose a little more this round; I'm already reduced to 80% but she's going to bump it down to 75%. Apparently that's as low as the rhabdo docs want to go, but hopefully it'll help me bounce back a little more quickly. I have to keep reminding myself that the effects of chemo are cumulative, and my doc is always quick to tell me I'm not alone in these delays. Ugh, it's just the waiting that's so awful.
Well on a happier note, here are some pics from my trip to NYC:
A quiet moment in St. Patrick's Cathedral
Mom at the MOMA. Unfortunately it was free admission that day, so it was packed. 
Gathering for Anthony's very low-key but very sweet wedding ceremony at Brooklyn Bridge Park.
Anthony and Nolwenn.
The high school gang at the after-party.
Me, Jeff, and Anthony (middle school buddies) at the climbing wall. 
Holly, me, and Jess (freshman dorm friends) at the Shake Shack in Madison Square Park.
Me and Manasi in Midtown.Friday, August 29, 2008
Back from NY
(8/29/08)
Boy I feel unmotivated. If you took the normal unmotivated feeling you sometimes get while working on a PhD, factor in the "I just got back from vacation" multiplier, and quadruple that, you might get to about how unmotivated I feel. Well, okay, so maybe that's an exaggeration (triple?), but it does get to be a real drag to keep starting and stopping on things. Progress on the PhD has been really slow going. I'm trying to edit my third publication so I can submit it to a journal. Once that's done, I think I'll be in good shape to defend my thesis. Actually, I really could do that in opposite order. In our department you really don't need to have anything written to defend your thesis. Strange I know, but as a result it's sort of difficult to know when you're ready to defend. All my various advisors seem to be in support of me defending and I was going to do it last year around this time, so . . . there's really nothing stopping me, but now I feel a little gun shy. As my friend JP rightly pointed out, I just need to stop being a wuss about it and get it done.
Still, it's a little daunting. Life is a constant disruption these days. This one (going to NY) was a really good disruption, but having a constant start and stop does make it tough to get into a rhythm. Maybe I should try a bit harder to at least do a little bit of work each day. If you have some velocity, no matter how small, you'll eventually get there. If you have zero velocity, there's no way you'll ever get anywhere.
The week in NY was super fun, but kind of exhausting - saw a bunch of friends from high school and beyond, and I basically spent the week running around the city with various combinations of people. This was all great, and I managed to survive, but I think I'm paying for it a bit now. It was the same when I came back from Hawaii - I just feel pretty exhausted and tired. I'll probably try and sleep a lot this weekend, so I can rest up for treatment next week (appointment on Wed, treatment on Fri).
I'll post some NY pics soon, but for now, have a great Labor Day weekend! (Oh, and happy Judgment Day - actually the 11 year anniversary of what should have been Judgment Day. Good thing they melted Arnold in that vat of molten metal! But oh, wait, according to the third movie, all that just postponed judgement day. . . Oh, so confusing. . . ). Oh yeah, and Happy Birthday Dave!
Boy I feel unmotivated. If you took the normal unmotivated feeling you sometimes get while working on a PhD, factor in the "I just got back from vacation" multiplier, and quadruple that, you might get to about how unmotivated I feel. Well, okay, so maybe that's an exaggeration (triple?), but it does get to be a real drag to keep starting and stopping on things. Progress on the PhD has been really slow going. I'm trying to edit my third publication so I can submit it to a journal. Once that's done, I think I'll be in good shape to defend my thesis. Actually, I really could do that in opposite order. In our department you really don't need to have anything written to defend your thesis. Strange I know, but as a result it's sort of difficult to know when you're ready to defend. All my various advisors seem to be in support of me defending and I was going to do it last year around this time, so . . . there's really nothing stopping me, but now I feel a little gun shy. As my friend JP rightly pointed out, I just need to stop being a wuss about it and get it done.
Still, it's a little daunting. Life is a constant disruption these days. This one (going to NY) was a really good disruption, but having a constant start and stop does make it tough to get into a rhythm. Maybe I should try a bit harder to at least do a little bit of work each day. If you have some velocity, no matter how small, you'll eventually get there. If you have zero velocity, there's no way you'll ever get anywhere.
The week in NY was super fun, but kind of exhausting - saw a bunch of friends from high school and beyond, and I basically spent the week running around the city with various combinations of people. This was all great, and I managed to survive, but I think I'm paying for it a bit now. It was the same when I came back from Hawaii - I just feel pretty exhausted and tired. I'll probably try and sleep a lot this weekend, so I can rest up for treatment next week (appointment on Wed, treatment on Fri).
I'll post some NY pics soon, but for now, have a great Labor Day weekend! (Oh, and happy Judgment Day - actually the 11 year anniversary of what should have been Judgment Day. Good thing they melted Arnold in that vat of molten metal! But oh, wait, according to the third movie, all that just postponed judgement day. . . Oh, so confusing. . . ). Oh yeah, and Happy Birthday Dave!
Thursday, August 14, 2008
Cystoscopy, schmistoscopy
Update, Schmupdate
(8/15/08)
Well, there's never a smooth ride in this business I guess. Things were slightly bumpy this week, although the issue seems to be resolved. I had a couple of isolated incidents of passing blood clots in my urine in the past couple of weeks. It was weird - it happened on separate days, once about two weeks ago, once last week, and once early this week. But since the symptoms seemed similar to what happened when all of this started, I sounded a bit of an alarm with my doctor, and in true fashion she was right on top of things. She scheduled me for an appointment on Monday, I had an MRI on Tuesday, another appointment on Wednesday (this one was already scheduled as a regular check-in before chemo), and a cystoscopy yesterday.
So, you might be wondering what a cystoscopy is. Well, it's a fun little procedure where they take a cystoscope (basically a long tube with a camera at the end), push it up the urethra, and look inside the bladder. Luckily they squirt in some lidocaine gel first to numb things up a bit, so it didn't hurt too much. I was pretty apprehensive going in, partly because I was worried about what they would find, but also because it's been so long since I've had to be poked and prodded that I guess the prospect was a little daunting. The procedure itself was actually pretty quick and only took a few minutes. The only painful parts were the shot of antibiotics I got at the beginning (to prevent infection) and the couple of minutes that the scope was actually in my bladder. The medically-inclined engineer in me was pretty fascinated at being able to see my own bladder on the TV screen. Luckily everything was pretty clear - there was a small calcification that my urologic oncologist (the same doc who did my prostate surgery) said was probably the cause of the bleeding but was nothing to worry about. In fact he knocked it off with the scope by accident and it immediately came out in my urine afterwards. Apparently cells in the bladder can get irritated by chemo/radiation, and when they die off they act as a sort of seed around which calcifications can form.
Anyhow, so that's a load off. My oncologist wanted to make sure the cystoscopy was clear before I went in for chemo, and so here I am, back in the ITA. I'm getting VC (vincristine, cyclophosphamide) this time around, and it's my first time without adriamycin/doxorubicin. Luckily that means I only need to be here for one day, but it still will be the whole day, since I need to get mesna (bladder protectant) at 4 hours and 8 hours after the cyclophosphamide. Ah well, it should be no problem compared to 4 days, and I'm hoping the side effects will be minimal compared to the other chemo drugs. I was watching the olympics for a little bit, but then Martha Stewart came on and I promptly changed the channel.
Well that's it for now. Hope you're all doing well out there and making the most of the waning summer months!
(8/15/08)
Well, there's never a smooth ride in this business I guess. Things were slightly bumpy this week, although the issue seems to be resolved. I had a couple of isolated incidents of passing blood clots in my urine in the past couple of weeks. It was weird - it happened on separate days, once about two weeks ago, once last week, and once early this week. But since the symptoms seemed similar to what happened when all of this started, I sounded a bit of an alarm with my doctor, and in true fashion she was right on top of things. She scheduled me for an appointment on Monday, I had an MRI on Tuesday, another appointment on Wednesday (this one was already scheduled as a regular check-in before chemo), and a cystoscopy yesterday.
So, you might be wondering what a cystoscopy is. Well, it's a fun little procedure where they take a cystoscope (basically a long tube with a camera at the end), push it up the urethra, and look inside the bladder. Luckily they squirt in some lidocaine gel first to numb things up a bit, so it didn't hurt too much. I was pretty apprehensive going in, partly because I was worried about what they would find, but also because it's been so long since I've had to be poked and prodded that I guess the prospect was a little daunting. The procedure itself was actually pretty quick and only took a few minutes. The only painful parts were the shot of antibiotics I got at the beginning (to prevent infection) and the couple of minutes that the scope was actually in my bladder. The medically-inclined engineer in me was pretty fascinated at being able to see my own bladder on the TV screen. Luckily everything was pretty clear - there was a small calcification that my urologic oncologist (the same doc who did my prostate surgery) said was probably the cause of the bleeding but was nothing to worry about. In fact he knocked it off with the scope by accident and it immediately came out in my urine afterwards. Apparently cells in the bladder can get irritated by chemo/radiation, and when they die off they act as a sort of seed around which calcifications can form.
Anyhow, so that's a load off. My oncologist wanted to make sure the cystoscopy was clear before I went in for chemo, and so here I am, back in the ITA. I'm getting VC (vincristine, cyclophosphamide) this time around, and it's my first time without adriamycin/doxorubicin. Luckily that means I only need to be here for one day, but it still will be the whole day, since I need to get mesna (bladder protectant) at 4 hours and 8 hours after the cyclophosphamide. Ah well, it should be no problem compared to 4 days, and I'm hoping the side effects will be minimal compared to the other chemo drugs. I was watching the olympics for a little bit, but then Martha Stewart came on and I promptly changed the channel.
Well that's it for now. Hope you're all doing well out there and making the most of the waning summer months!
Tuesday, August 05, 2008
Feelin' Fine
(08/05/08)
Just three days til the craziness that is going to be the Olympics. Man, I hope China doesn't implode. I'm not really in support of protesting/boycotting the Olympics, but I kinda hope that China will take something positive away from all the criticism it's been getting and is likely to get during the events. Anyhow...
The last round finished up without too much fanfare - I definitely handled it better after that first day, but four days in the hospital is draining, even with going home at night. I'm getting a pretty good read on my own body's reaction to the chemo drugs though. The cycle is pretty consistent - after the chemo is done, I get about two days of minor nausea and just uncomfortableness. After that my skin gets kind of achy and sensitive all over for a couple days, and my tongue and mouth get minor sores (my tongue gets white and splotchy - it looks worse than it feels though). Then after about five days those things go away and I'm back to feeling relatively normal. Not too bad in the grand scheme I guess. After reading Lance Armstrong's book, I was expecting to be doubled over in the fetal position puking my guts out most of the time during treatment. I thought I would lose tons of weight and just feel super weak. Luckily none of that has really happened. Some days I even forget that anything is wrong. Not for the whole day, mind you, but I get these brief moments of time when my mind is occupied with something and I'm not constantly thinking about all this crappiness (heh, is that how you spell crappiness? happy -> crappy, so happiness -> crappiness?).
In any case, I've been feeling pretty good for the past week or so, both physically and mentally. My climbing has been going in this sawtooth pattern where it gets better and better then takes a dive after a cycle of chemo. Still, I've been able to go more frequently and climb for longer than when I first started during treatment, so I guess that's a good sign. Somehow, I've also been in a consistently good mood for the past week or so. Pre-last cycle I was in a consistently bad mood - maybe it was due to all the delays. I know what people say about a positive attitude, but sometimes you just can't help feeling crappy. I guess you just have to let yourself feel what you're going to feel and try to come out of it after a time. It certainly helps you appreciate the days when you feel good.
Still have seven more cycles to go. . . At this rate it'll take me through December - given that there will probably be more delays, I guess I'll likely turn 30 (on the 24th) before this is all over. Even so, I like to think that the chemo and radiation have already done their job in mopping up all the cancer cells, and any further treatment is just gravy. So pour some more gravy on me!
Just three days til the craziness that is going to be the Olympics. Man, I hope China doesn't implode. I'm not really in support of protesting/boycotting the Olympics, but I kinda hope that China will take something positive away from all the criticism it's been getting and is likely to get during the events. Anyhow...
The last round finished up without too much fanfare - I definitely handled it better after that first day, but four days in the hospital is draining, even with going home at night. I'm getting a pretty good read on my own body's reaction to the chemo drugs though. The cycle is pretty consistent - after the chemo is done, I get about two days of minor nausea and just uncomfortableness. After that my skin gets kind of achy and sensitive all over for a couple days, and my tongue and mouth get minor sores (my tongue gets white and splotchy - it looks worse than it feels though). Then after about five days those things go away and I'm back to feeling relatively normal. Not too bad in the grand scheme I guess. After reading Lance Armstrong's book, I was expecting to be doubled over in the fetal position puking my guts out most of the time during treatment. I thought I would lose tons of weight and just feel super weak. Luckily none of that has really happened. Some days I even forget that anything is wrong. Not for the whole day, mind you, but I get these brief moments of time when my mind is occupied with something and I'm not constantly thinking about all this crappiness (heh, is that how you spell crappiness? happy -> crappy, so happiness -> crappiness?).
In any case, I've been feeling pretty good for the past week or so, both physically and mentally. My climbing has been going in this sawtooth pattern where it gets better and better then takes a dive after a cycle of chemo. Still, I've been able to go more frequently and climb for longer than when I first started during treatment, so I guess that's a good sign. Somehow, I've also been in a consistently good mood for the past week or so. Pre-last cycle I was in a consistently bad mood - maybe it was due to all the delays. I know what people say about a positive attitude, but sometimes you just can't help feeling crappy. I guess you just have to let yourself feel what you're going to feel and try to come out of it after a time. It certainly helps you appreciate the days when you feel good.
Still have seven more cycles to go. . . At this rate it'll take me through December - given that there will probably be more delays, I guess I'll likely turn 30 (on the 24th) before this is all over. Even so, I like to think that the chemo and radiation have already done their job in mopping up all the cancer cells, and any further treatment is just gravy. So pour some more gravy on me!
Friday, July 25, 2008
Ahh. . . there you are!
(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.
"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.
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!
Tuesday, June 24, 2008
Me and My Port
(6/24/08)I figured the last post was so jam packed with stuff that I'd save this last pic for a separate post. Here's what the port looks like under my skin. It's a little creepy to me still, like a little alien or cyborg part or something sitting there. Luckily it doesn't really move around or anything. The double circle is where they stick the two needles in to access it, and the line goes up over my clavicle, so you can see the catheter sticking up through the skin there. So far it's definitely been worth it. No more shower sleeve, no more weekly dressing changes - plus I can swim and climb and do all sorts of things without worrying too much about it. I tend to fiddle with it a lot, kind of like people who have piercings, but usually I don't notice it too much. It does help me feel that much closer to normal.
Me and My Brows
On the flipside, one thing that's been making me feel a little less normal is my loss of eyebrows and lashes. The brows have really thinned out quite a bit, and the lashes have also mostly fallen out. I guess like everyone I'm a little vain, so the ability to pass myself off as some guy who just decided to shave his head was kind of nice. I suppose most people don't really notice, or if they do they certainly don't say anything, but for some reason I always end up wondering what the guy on the street would think. Plus, I think I've started coveting other people's eyebrows. For some reason I find myself staring at them all the time now. It's ridiculous, I know, but I guess I just never noticed eyebrows before. Maybe I can start to make other people feel self-conscious by just continuously staring at their nice thick, bushy brows.
Anyway, my eyelashes coming out doesn't bother me that much from an aesthetic level, but practically I think I've started getting more gunk in my eyes as a result. I guess it turns out they really do serve a purpose, to keep crap out of your eyes. I can't even do the boy scout first aid trick we learned where you pull down your top eyelid over your bottom lid to get the botttom eyelashes to scoop out the gunk in your top lid. How is one supposed to get gunk out of his eye without eyelashes?
Monday, June 23, 2008
Hawaii, Graduation, Round 9, Oh My!!
(6/23/08)
Hey folks, it's been a long while since I last posted. I guess usually that's a good thing, since it typically means I'm able to do more and more besides sit in front of my computer all day (or do something different while I'm sitting here, like actually write up some of my research). Aaaannnyway, It's been a pretty busy month or so. After the last round of chemo (round 8), I spent a couple days trying to recover in time to go to Hawaii (woohoo!) for my college buddy's wedding. I was a tad worried when I wasn't feeling that great on Sunday, since our flight was on Tuesday, but it all worked out and I was fine (though a little tired) by the time we had to go to the airport. After coming back from Hawaii I had about a week to recover from that (I guess somehow I managed to have energy while there but my body kind of revolted and crashed a bit when I came back) before walking for graduation. Then it was on to round 9, my last in-patient chemo and my last chemo with doxorubicin (adriamycin).
Woo hoo Oa'hu
I was a little concerned about bringing my neupogen shots on the plane, but the security folks weren't really phased by it at all. I brought the syringes in a little soft-sided lunchbox cooler that Serena and I found at Target. I had a note from my doctor all prepared, but didn't even need it. The guy did ask to look inside the cooler, but all he said was, "Is it medical?" I nodded my head and that was good enough. (Funny enough, on the way back the guards were more concerned with the orange and jars of jam that I had in my bag than the needles).
So of course Hawaii was beautiful and awesome. My friend Tom (from high school - wait, actually from MIDDLE school!) surprised us at the airport with a lei greeting and took us to a place in Chinatown for lunch. Tommy decided to up and move to Hawaii for a year or so, since his brother is stationed there right now with the Navy. Tom and his bro live up in Kailua, which has a gorgeously long stretch of beach with very few people on it. Quite the difference from the touristy bustle of Waikiki.
Our hotel in Waikiki was a little rundown but had a kitchenette and fridge (though at first we thought the fridge might not be working - it took a while to cool off), so that was good for storing the neupogen shots and cold drinks. We spent most of the days driving around the island or hanging out with friends who were in town for the wedding. I'll let the pics speak for themselves (err, with the help of captions, that is).
Diamond Head: The lookout from the top of the crater on the east side of the island. It's a short but steep-ish hike to get up there - the top part has a bunch of stairs that were part of the old military lookout tower. I was huffing and puffing but I made it up!
Yay! I'm in Hawaii!
This was a really cool lookout point on the north shore. There's a hole that goes right through that big island rock out there.
Swimming at Waimea Bay on the north shore. I actually got to go in the water, too, thanks to my medi-port, but I didn't get any pics of myself.
Morning stroll at Kailua Beach on the windward side of the island. It's a lot more relaxing and less crowded than Waikiki.
Then of course there was the wedding. Not a bad backdrop, eh?
Me and the groom, Mike. In college people used to get us confused with each other because we both had longer hair and would rollerblade around campus. I told him he has to shave his head to keep the confusion going. . .
A mini-reunion of our freshman dorm. I'm standing next to Michael, my freshman year roommate. There were tons of other Stanford folks there too, which made for lots of fun.
Graduation (6/15/08)
Graduation was actually more fun than I was expecting. The day wasn't too hot, and though the ceremony was its normal bit of tedium, it was fun to see people there having a good time with their friends and family. Plus, it was nice to celebrate something after all that's happened (thanks for the perspective, Blase). For those of you who might be confused, no I haven't actually graduated yet. As a PhD student, if you're close to graduating, they will let you walk during the graduation ceremony (for PhDs, you are "hooded" by your advisor), but you don't actually get your diploma. Here are some pics:
Pre-ceremony photos with the roomies, Charlie and Janet. Charlie is also getting his PhD, but he walked last year.
"Getting hooded" by my undergraduate EE advisor, Bob Dutton. Usually this is done by your PhD advisor, but, well, it's a long story...
I've got another pic like this from when I got my masters. This time, they actually put something in there to tell you you have to give the folder back. Last time, it was just blank. I guess my mom found it amusing and wanted to recreate the picture.
Me, my mom, and my advisors. Prof. Gunter Niemeyer (Mechanical Engineering) is the tall guy on the left (sporting MIT faculty robes) and Dr. David Liang (Cardiovascular Medicine) is the one on the right. Don't ask me how I'm ending up with an EE degree, but it does turn out that both of them have "courtesy" appointments in the EE department.
Round 9 (6/16-6/18/08)
Well, as I said before, this was my last in-patient chemo AND my last chemo with doxorubicin (adriamycin). From here on out, when I get this set it'll just be VC (vincristine, cyclophosfamide), which is just a one day infusion. So the remaining chemo cycles will alternate between four days (ifosfamide, etoposide) and one day every three weeks. Just eight more cycles to go!
Right now I'm feeling pretty good (6/23/08), although I last week I was apparently a little anemic. Not enough to need a blood transfusion, but I think it was enough to make me feel really tired and worn out when I went climbing yesterday (I know, I should probably just be happy to be able to climb at all and not complain about how well I'm climbing, but I guess that's the overachiever in me. Besides, what's the world coming to when you can only do a 5.9 and can't make it all the way up a 5.10a at Planet Granite? Honestly...). It's actually not too bad if I take long rests between climbs, but if I try and do anything that requires a modicum of endurance, my whole body starts to feel like it's about to collapse. It's such a strange feeling, because it's much more sudden than if you were normally just exhausted from exercise, but it also recovers more quickly as well.
Oh, and there's one more bit of good news! My scans were totally clear! I had an MRI of my pelvis and it showed that the nefarious "butt bump" has totally gone away. My chest CT showed that the little lung nodules are still there, but as we thought before, this probably means that they're just from an old infection or something. My doctor thinks it's very unlikely that one tumor would respond to the chemo but the others wouldn't, so basically the nodules should have gone away if they're tumor. Since they didn't, it seems like they're not. Woohoo!
Hey folks, it's been a long while since I last posted. I guess usually that's a good thing, since it typically means I'm able to do more and more besides sit in front of my computer all day (or do something different while I'm sitting here, like actually write up some of my research). Aaaannnyway, It's been a pretty busy month or so. After the last round of chemo (round 8), I spent a couple days trying to recover in time to go to Hawaii (woohoo!) for my college buddy's wedding. I was a tad worried when I wasn't feeling that great on Sunday, since our flight was on Tuesday, but it all worked out and I was fine (though a little tired) by the time we had to go to the airport. After coming back from Hawaii I had about a week to recover from that (I guess somehow I managed to have energy while there but my body kind of revolted and crashed a bit when I came back) before walking for graduation. Then it was on to round 9, my last in-patient chemo and my last chemo with doxorubicin (adriamycin).
Woo hoo Oa'hu
I was a little concerned about bringing my neupogen shots on the plane, but the security folks weren't really phased by it at all. I brought the syringes in a little soft-sided lunchbox cooler that Serena and I found at Target. I had a note from my doctor all prepared, but didn't even need it. The guy did ask to look inside the cooler, but all he said was, "Is it medical?" I nodded my head and that was good enough. (Funny enough, on the way back the guards were more concerned with the orange and jars of jam that I had in my bag than the needles).
So of course Hawaii was beautiful and awesome. My friend Tom (from high school - wait, actually from MIDDLE school!) surprised us at the airport with a lei greeting and took us to a place in Chinatown for lunch. Tommy decided to up and move to Hawaii for a year or so, since his brother is stationed there right now with the Navy. Tom and his bro live up in Kailua, which has a gorgeously long stretch of beach with very few people on it. Quite the difference from the touristy bustle of Waikiki.
Our hotel in Waikiki was a little rundown but had a kitchenette and fridge (though at first we thought the fridge might not be working - it took a while to cool off), so that was good for storing the neupogen shots and cold drinks. We spent most of the days driving around the island or hanging out with friends who were in town for the wedding. I'll let the pics speak for themselves (err, with the help of captions, that is).
Diamond Head: The lookout from the top of the crater on the east side of the island. It's a short but steep-ish hike to get up there - the top part has a bunch of stairs that were part of the old military lookout tower. I was huffing and puffing but I made it up!
Yay! I'm in Hawaii!
This was a really cool lookout point on the north shore. There's a hole that goes right through that big island rock out there.
Swimming at Waimea Bay on the north shore. I actually got to go in the water, too, thanks to my medi-port, but I didn't get any pics of myself.
Morning stroll at Kailua Beach on the windward side of the island. It's a lot more relaxing and less crowded than Waikiki.
Then of course there was the wedding. Not a bad backdrop, eh?
Me and the groom, Mike. In college people used to get us confused with each other because we both had longer hair and would rollerblade around campus. I told him he has to shave his head to keep the confusion going. . . 
A mini-reunion of our freshman dorm. I'm standing next to Michael, my freshman year roommate. There were tons of other Stanford folks there too, which made for lots of fun.
Graduation (6/15/08)
Graduation was actually more fun than I was expecting. The day wasn't too hot, and though the ceremony was its normal bit of tedium, it was fun to see people there having a good time with their friends and family. Plus, it was nice to celebrate something after all that's happened (thanks for the perspective, Blase). For those of you who might be confused, no I haven't actually graduated yet. As a PhD student, if you're close to graduating, they will let you walk during the graduation ceremony (for PhDs, you are "hooded" by your advisor), but you don't actually get your diploma. Here are some pics:
Pre-ceremony photos with the roomies, Charlie and Janet. Charlie is also getting his PhD, but he walked last year.
"Getting hooded" by my undergraduate EE advisor, Bob Dutton. Usually this is done by your PhD advisor, but, well, it's a long story...
I've got another pic like this from when I got my masters. This time, they actually put something in there to tell you you have to give the folder back. Last time, it was just blank. I guess my mom found it amusing and wanted to recreate the picture.
Me, my mom, and my advisors. Prof. Gunter Niemeyer (Mechanical Engineering) is the tall guy on the left (sporting MIT faculty robes) and Dr. David Liang (Cardiovascular Medicine) is the one on the right. Don't ask me how I'm ending up with an EE degree, but it does turn out that both of them have "courtesy" appointments in the EE department. Round 9 (6/16-6/18/08)
Well, as I said before, this was my last in-patient chemo AND my last chemo with doxorubicin (adriamycin). From here on out, when I get this set it'll just be VC (vincristine, cyclophosfamide), which is just a one day infusion. So the remaining chemo cycles will alternate between four days (ifosfamide, etoposide) and one day every three weeks. Just eight more cycles to go!
Right now I'm feeling pretty good (6/23/08), although I last week I was apparently a little anemic. Not enough to need a blood transfusion, but I think it was enough to make me feel really tired and worn out when I went climbing yesterday (I know, I should probably just be happy to be able to climb at all and not complain about how well I'm climbing, but I guess that's the overachiever in me. Besides, what's the world coming to when you can only do a 5.9 and can't make it all the way up a 5.10a at Planet Granite? Honestly...). It's actually not too bad if I take long rests between climbs, but if I try and do anything that requires a modicum of endurance, my whole body starts to feel like it's about to collapse. It's such a strange feeling, because it's much more sudden than if you were normally just exhausted from exercise, but it also recovers more quickly as well.
Oh, and there's one more bit of good news! My scans were totally clear! I had an MRI of my pelvis and it showed that the nefarious "butt bump" has totally gone away. My chest CT showed that the little lung nodules are still there, but as we thought before, this probably means that they're just from an old infection or something. My doctor thinks it's very unlikely that one tumor would respond to the chemo but the others wouldn't, so basically the nodules should have gone away if they're tumor. Since they didn't, it seems like they're not. Woohoo!
Friday, May 30, 2008
Round 8
(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!
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!
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.
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!
Subscribe to:
Posts (Atom)
