Happy Chinese New Year's Eve!
(01/25/09)
Yes, I realize the subtitle here is a little incongruous with the main title of this post. Today is a day for celebration (or at least the start of celebration, as Chinese New Year usually lasts for weeks, for some reason), but I have some unfortunate news to share as well.
Remember those pesky lung nodules I had throughout the past year? They're the reason I was denied from the medium risk clinical trial and put into the high risk category. They were on my initial scans but then didn't change too much, and so we thought that perhaps they weren't anything to worry about in the first place (since they weren't responding to the chemo). Well, one of them is misbehaving and has grown since my last scan in October. It was about 4mm and is now up to 9mm. That's still pretty small, but my doctor and the tumor board (that's the collection of doctors, surgeons, and radiologists who meet every week to discuss cases) agree that it needs to come out. Luckily, the nodule is pretty close to the surface in my upper left lung, so it should be pretty easy to get to in a minimally invasive way. They'll poke three holes in my left side and go in with laparoscopic tools to cut out the offending bit of tissue. I should only be in the hospital for a couple days (surgery will be on Feb. 2).
Of course I found all this out after scheduling the date for my defense on (of all days) Friday, the 13th of Feb. I guess we'll just have to see how things go, but if I can stay on track and defend, then I'll at least get that hurdle out of the way. Writing and turning in the dissertation shouldn't be too bad after that. I have a lot written and have just a couple more experiments to re-do so we can publish our data.
How do I feel? Honestly, kind of crappy. I'm trying to stay optimistic, I really am. It's just tough. Uncertainty is such a bear. Not a teddy bear, either. Anyhow, I've been reading different books about good nutrition and am slowly working on changing my eating habits, but honestly who really knows what will work in the end? I guess you just try and do everything you can and hope for the best. On the plus side, my strength is definitely coming back, and I've been able to climb more and more, which is great.
If I can get through this month I think I'll be golden. . . have surgery, defend, and then spend a few days in sunny Mexico. . . should be good. . .
Sunday, January 25, 2009
Tuesday, December 30, 2008
DONE!!!
(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!!!!!!!!!!
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!!!!!!!!!!
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).
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