First Dose (again)

(5/13/09)

Well, it turns out that Dr. J and I were thinking along similar lines. The tradeoffs were these:

- Do chemo first and risk the tumors growing and becoming too unwieldy for radiation to handle

- Do radiation to the lungs first and risk having disease pop up somewhere else in the body

Solution: do both at the same time!

But of course, so simple! So that's the plan right now, to wipe out the disease in the lungs and clear it out everywhere else, too, at the same time. We'll probably switch up the chemo drugs after radiation is done, too, so we can keep the cancer from becoming resistant. 

It sucks of course, but so far this treatment is looking a lot easier to handle. I have daily cytoxan by mouth for 28 days, and on days 1, 8, and 15, I get a 10-minute push (injection) of navelbine (vinorelbine). Hopefully aside from losing my hair, I won't have too many side effects. Starting Friday I'll go in for radiation therapy every day for 15-20 minutes for 10 days. The radiation will target both of my whole lungs with a larger dose going to the two nodules. 

Getting on a path to solving the problem always makes one feel better, although at this point I'm starting to get good at dealing with uncertainty. . . 

As a parting note for this post, I have to give a shout out to one of my personal heroes, Steve, who is battling Ewing's Sarcoma and just came out of a really rough couple of weeks. He and his wife Ann are such a strong, upbeat couple, and their positive strength is incredibly infectious. Steve, you're a freakin' champion!! Ann, you're incredible, too! 

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!

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

Round 2 (Fight!)

'Twas the night before chemo (12/16/07)

So of course I knew the second round of chemo was coming up on Monday (the 17th) - the problem was I was feeling really good that Sunday before. I had gone out to see some friends on Sat, even ran around a little tossing the frisbee. Heck, Yves and I even went climbing for a bit on Sunday - sure, it was among a birthday party full of crazy screaming kids at Twisters, but we went climbing nonetheless. So, the point being, I was feeling pretty darn good physically, and toward evening I started to think a bit about how crappy the next few days would be, how boring and uncomfortable and aweful it would feel, and ughh, I started to get slightly down about it. After climbing Yves dropped me off at my house, where I thought I'd hang out for the evening with Serena and Janet. Then my mom called and was all asking whether I was coming home (to my sister's) to eat, and I said well, I wasn't planning on it, blah blah blah - finally we decided I would go back to eat with them, which of course made me a little cranky, as I had wanted to spend some time hanging out with people (normal caveats apply here of course - I love my mom and all, but sometimes you just . . . ). Anyhow, so Serena takes me back to my sister's place, where we have dinner 'n' such. Then she says, oh, Janet's coming over later to hang out. Okay, that seems normal, sure, whatever...

But when the doorbell rings, in comes Janet and this flux of other good friends, and here I am sitting at the dinner table flabbergasted at what's going on (though I guess I figured it out eventually). Folks showed up with four awesome posters filled with pics and notes from friends, as well as a bunch of packages containing parts for the digital SLR camera I've been coveting for about, oh, two years or so! It was quite awesome - I teared up, didn't really know what to say but I blubbered something about how cool this all was.

Anyhow, (breaking the fourth wall here) thanks to everyone who was involved in this wonderful surprise - the second half came in the mail the other day, too (a full-size professional photo printer), so I'm beside myself with excitement at being able to use these great gifts. Plus the posters themselves (which would have been more than enough to lift my spirits) are fab-o-lous! It was such a treat to get such a wonderful gift from all corners of the globe! Plus, right in time for my birthday (well, a week ahead, but who's counting)!

So, without further ado, the photos... (By the way, I've posted shots of the posters up on Flickr for those of you who want to see more detailed versions of the final products.)

The gang with the posters.

Mike looking smirky between my sister Julia and my mom.

Janet, Alan, and Yves.

Me with genuine surprise.

Charlie - a happy minstrel on the guitar.

Poster 1 with Wong's lovely drawings of (ahem) climbing gear around the center picture.

Poster 2 - I love the classy touch of the post-Bay-to-Breakers proof that we were all too cheap to pay for. Not that any of us in the photo actually ran the race anyway. Or registered, for that matter.

Poster 3 - Cosmos Education-Themed (Don't know about Cosmos? Check out http://www.cosmoseducation.org or http://cosmoseducationkenya.blogspot.com. That's right, never miss a chance to pimp a good cause.)

Poster 4 - High-school themed. Those are actual prom/homecoming photos in the upper left.

And one bonus pic - this is the hat that my mom supposedly bought in a men's hat store for me. Everyone confirmed how feminine it looks, so I guess I won't be wearing this one...

Hunger vs. Nausea

(12/5/07)
I woke up just now feeling pretty good, though a little hungry. Or was it nausea? It's strange how similar the two feelings seem after a while. At this point I should probably be okay without the anti-nausea meds, but I suppose it can't hurt to take them for a couple more days. It's been about 5 days after the last drop of my first chemo cycle, and usually the nausea side effects wear off after 4 days or so. Pretty soon my blood counts should start dropping, but I've been taking neupogen shots to try and keep those up (by the way, all you diabetics out there or other folks who have to give themselves shots regularly, I feel for ya).

You know, it's funny how medicine works these days. A lot of it is brute force or experimentally driven, and most of the time you have a couple of main meds you're administering, and everything else is to take care of side effects. Amazingly, though, they seem to have things down to some sort of pseudo-science at least.

(11/27/07-11/29/07)
So when I checked in for my first cycle, the attending doc and his entourage of residents and fellows came by in the morning to tell me, "Well, you're starting chemo today, and if all goes well, it'll be really really boring." I guess what he meant was, we've got so many drugs to take care of all of your side effects you'll mostly just want to get it done and over with. Ah, great.

They started pumping the drugs a little after 1pm. The first was Vincristine, a simple 3-5 minute push through the PICC line. Cyclophosphamide came in a drip IV bag that hangs for about an hour. Then came the doxorubicin. That's the one that can cause cardiotoxicity (basically heart failure after a large cumulative dose), so they diluted that one down and dripped it in 2 huge bags for 48 hours. So within an hour and a half or so the first two drugs were in my system, but then it would be two days later before I could leave, thanks to the doxorubicin.

So let's see, where did the side effect controllers come in? Every four hours or so I had to have drip bags of Mesna, which helps to protect the bladder from cyclophosphamide. For the doxorobucin, the nurse has to come in and check the line to make sure no meds are leaking out into the veins, since they can burn out your vessels if you're not careful (my nurse Linh is kindly doing that service in the picture). Eventually I'll need an echocardiogram to get a baseline reading of the ejection fraction of my heart, so that we can track if the doxorubicin is having toxic effects. As for other meds, there's a nice cocktail of anti-nausea drugs they can give: Zofran, Reglan, Compazine, Ativan - of course these are all household names. Well, at least at my house.

Oh, but Zofran can cause headaches, so you may need some oxycodone for that, and Reglan can cause diarrhea, but both Compazine and Ativan can cause constipation, so maybe they'll cancel out. If not, you should take some stool softener, just in case, and maybe some Senacot or Milk of Magnesia to help things along. Ah, and don't forget the fun injection of blood thinner that you need every day while you're getting the meds to make sure clots don't form. That one goes in through the belly, so yeah, it kinda stings.

Once the doxorubicin was done, though, I was allowed to leave the hospital and see how the fun would continue at home. It actually wasn't that bad. I couldn't eat too much the first few days and spent a lot of the time sleeping. Oxycodone was probably the best for just knocking me out and making my whole system feel calmed down and better. In general I was drinking tons of liquids and keep a rising temperature at bay. After a couple days though I was eating more and more, though certain food cooking smells tended to make me retreat upstairs to my room. Oh yeah, and at night I got to replace those blood thinner shots with nuepogen shots.

Ah yes, one thing I forgot to mention - since the chemo tends to attack your rapidly dividing cells, it wreaks havoc with things like your digestive system and even the cells in your mouth (incidentally, this is also why your hair starts falling out - mine hasn't, yet). So the past couple days I've had a nasty white blotchiness all over my tongue and on the inside of my mouth. Ick. At first it felt like I had cotton balls in my throat, but I've been using a special Stanford formulated mouthwash that has helped things feel less irritated. It still looks really gross, though. Serena says it'd take more than that to gross her out, but I'll refrain from posting a picture.

My temp seems to be pretty good today, so I might actually try some real exercise. Mostly I've been going out for short walks during the day and maybe doing some tai chi, but I think soon I'll start trying to work some more strengthening exercises back into the mix. My ultimate goal is to get back on the climbing wall soon (Gah - it's been months!). I've gotten the okay from Dr. J and a few different nurses, as long as I take it easy of course... We'll see.

I'm curious to see when my hair starts falling out. It's supposed to happen in the first 2-3 weeks. I imagine when I start to see clumps falling, I'll just have a haircutting party and shave it all off. Okey dokey, I guess that's it for now.