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.

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!

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!

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!

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.

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

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!