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). 

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.

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.

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

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!