'Twas the night before Christmas

Drugs don't always make you feel better (12/24/07)

Well, sports fans, I turned 29 today. One day closer to the big 3-0, but not feeling a day closer, well except for this little stint of medical problems I've been having recently. Aheh heh heh. . . ahem . . . What? Too soon?

Anyhow, so it's my b-day today, and I'm actually feeling pretty good. I think that the trick for me was actually not to take any anti-nausea drugs today. For the past couple of days I've been taking everything under the sun that was prescribed to me: Protonix, Compazine, Colace, Reglan, Zofran, sprinkled in with an occasional Ativan and of course the nightly Neupogen shot. Well, I for the past couple days I've also been feeling this ridiculously uncomfortable restlessness, that I can only describe as all the physical manifestations of anxiety without any of the emotional ones. Well, I suppose there were some of the emotional ones, but mostly they were caused by the fact that I felt physically anxious, if that makes any sense. But today, I decided I wasn't havin' none of that, so I didn't take any of the drugs, besides the Protonix and Colace of course (I mean, who wouldn't want to take those two?), and I feel much better. (Incidentally, Protonix is just for acid indigestion and Colace is a stool softener - too much information, I know, I know). So anyhow, as a result (or possibly because it's day 5 after chemo), I feel much better today, and have been much less whiny too. :P

Anyhow, cooking is still underway for our Christmas dinner, rife with both new and old recipes, so things should be pretty tasty. More to come. . .

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...

Hair or No Hair?

Pad-free, counts-high, and head-shaved (12/14/07)

I forgot to mention in the last post that I've been pad-free for about a week now (woohoo!). It's a little gross, but it's a complication from prostate surgery that you end up leaking a bit. Luckily there are special "Male Guards" you can buy that are like thick maxi-pads, basically, but for guys. I guess it's more like a mini-diaper for just the front part of your pants. It's actually not that bad once you get used to them, but it's a relief not to need them anymore. I'd say things aren't working at quite 100% but pretty close, so I guess that's a good sign. My surgeon says it's still early after the surgery, so things should get even better over time.

As you may have guessed, I didn't end up going in for chemo this week, but it wasn't because my counts were too low. I ended up with pretty good white cell and platelet counts - Dr. J was really pleased and surprised at how well I've responded (including the retreat of the butt bump). She said she's not convinced that a compressed 2-week schedule would be any better than 3-weeks (it's still an open research question), so we're going to stick to the 3-week cycles. Also, I still had mouth sores on Monday, so she didn't want to start another round of chemo til those went away. But all in all it's a real positive that my counts bounced back as well as they did, and that I could have started another round is definitely encouraging.


The head-shaving party (12/12/07)

So on Wednesday night we had a little head-shaving party. My hair was coming out in serious clumps, maybe 20 strands at a time, and it was definitely starting to thin on top, so it seemed like time to go cueball (though now my head is cold most of the time and I'm constantly wearing beanies to stay warm). Also, we thought it would be a good time to set some new hairstyle trends, so be on the lookout for some of these dazzling looks in your favorite winter catalog...

The Before Picture. It's hard to tell, but my hair is thinning on top something fierce...

The first cut. Cat Stevens, eat your heart out.

Some fun styling to start with . . . I call this one "The Ed Grimley". 10 points to anyone who knows who that is.
Live long and prosper.

Here's the reverse mohawk.

But don't worry about it; you can always invoke the comb-over to hide it.

And then there's the cross or plus sign, depending on what you prefer. A great look for American Red Cross employees and volunteers. Come on, people - solidarity!

And the cross is so versatile - Here you see the double tail.

And of course, the Four-Tail.

Cutting off the tails.

The finishing touches.

And . . . The final product!

Mini Milestones

Back on the wall! (12/10/07)

Well, this weekend I got back to the climbing wall after . . . waay too long - I think end of August was the last time I went climbing but I've been itching to do so ever since. Needless to say, I sucked big time, but it was fun nonetheless. I had some major trouble doing climbs that should have been way easy, but not bad considering I haven't really exercised in all that time. Today my forearms are experiencing major second-day soreness. (Thanks to Blase for the pic and access to the wall!)

Last Thursday I also returned to tai chi class, which was pretty fun, too. Tai chi is great, because you can pretty much always do it to some extent. Even if you can't do the whole form, there are always little exercises that help you keep moving. There's a quite old fellow who comes to class with a walker - he used to be able to stand and do some of the form, but now he sits in a chair but still follows along. It's pretty impressive.

I tried to go out to eat this weekend, too, but that was less successful. The actual eating out part was fine, but the stomach-handling-it-well part was not so good. Yikes. Anyhow, I guess I should stick to home-cooked food anyway (as per doctor's suggestion) but it was so tempting to have something different. I guess the alternative is to get some cookbooks and try to learn how to cook some other types of food.

Anyhow, a couple other less fun things have been happening. I've had some mouth sores (side effects from the doxorubicin) that make it tough to eat/drink, but they seem to be healing up now. Also, the hair has started coming out. I noticed it a few days ago, but now I seem to be shedding all over the place. It's very annoying. It hasn't come out in big clumps yet, but pretty much any time I run my hand through my hair, 4-5 strands will come out. Soon I'll just shave it off, me thinks.

Well, I'm off to a follow-up appointment soon - we'll see if I get to start the second round this week, or if my blood counts are too low (in which case we'll start next week). The docs said not to get my hopes up about starting again this week, but we'll see. I kind of hope I don't have to go into the hospital again - it'd be nice to have a week of semi-normality for a change.

Oh yeah, the bump!

An unprecedented two posts in one day! I know, how lucky you must feel...

I forgot to mention in my last post, that the evil butt bump, my little enemy, has retreated! I was dubious at first when the doctors said, "Oh well you should feel that go down pretty quickly." But to my surprise, it seems to have all but disappeared! After the first day, it seemed about the same, but then two, three days later it was definitely softer, and maybe even smaller? By day 4 it was hardly noticeable at all, and now I don't know that I can feel much of anything except a little tenderness in that area. Very strange, but very good news. I hope the lung nodules have responded as well.

Woohoo! Thanks to everyone for your virtual, loving kicks in the butt! Of course, we've got to confirm eventually with scans, and then stay on this long road to make sure it stays away for good. But, not bad for a week of therapy, eh?

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.

The Humor of the Situation

What ho? December already? (12/2/07)

So I've gotten a lot of comments on this blog, some about how well it's written (really, guys? I mean, who's humoring who, here?), but a lot about how upbeat I seem, at least in writing. Well, strangely enough, it's not really an act at all. Sure, there are days when I really don't feel like talking to anyone or am just kinda down and frustrated, but for the most part I guess I am pretty upbeat about all this. Maybe I just don't know any better. I guess after the fifty-millionth time hearing someone exclaim, "Oh, but you're so young!" or "But this is so rare!" you can't help but laugh, really. Even when the PICC nurse puts your line in way too far because of a bad radiologist's read of a X-ray, you kind of just have to take it in stride. These people are supposed to be the best of the best, and they still make those kinds of mistakes? Sure, you get a bit angry and miffed, but at the end of the day my heart got a little tickled (literally) and that was about it.

There is a fine line between being accepting of new obstacles and being a pushover, though. That's where it's really important to have people who can root for you and pull for you and push for you when you need it. I think in all this I have tended to be a little too forgiving and too patient, whereas my family (mom, sis, Serena) have been really advocating for me - can't we get that appointment a little sooner? where's the pathology report? can we send slides out to another hospital? When will we get the results? So for all my laid-backness, they've been supplying the fuel to get things done. Now that we have our superstar doc, some of those fears are allayed, but you always have to keep diligent.

Anyhow, for this installment, I thought I'd describe a bit how I ended up (finally) in chemotherapy this past week.


Chemo, Schmemo (or "How I was almost treated at the Children's Hospital")

So for those of you following along, the PICC saga was but a small side vignette of what really went on the week of Turkey day. First off, here's what my schedule looked like that week:

Mon - 8am - injection for bone scan
Mon - 9am - PICC placement
Mon - 11:45am - PICC adjustment 1
Mon - 12:40pm - bone scan
Mon - 5:30pm - PICC adjustment 2
Tues - 10am - echocardiogram to confirm PICC was in the wrong place
Tues - 11am - PICC adjustment 3
Tues - 2pm - Appointment with pediatric oncologists in the children's hospital
Wed - 10am - appointment with radiation oncologist in adult hospital
Wed - noon - PICC bandage change
Wed - 2pm - Chest CT scan at Children's hospital

I suppose this is how things can become a full-time job. Of course, each appointment lasts at least an hour, and that's if things are going smoothly. And each discussion with a doctor seemed to bring up more questions and even more frustration with the slowness of things.

As mentioned before, the original diagnosis was slightly off from what our second (and now third) opinion hospitals said, and so it looked like embryonal rhabdomyosarcoma would be the final call. You might think that here's a situation in which to get pissed off at the pathologists for not calling this sooner, but at the same time, if it takes top experts at three hospitals this long to figure out what something is, you've gotta think it really is that unusual and rare.

Going into the appointment on Tuesday we had verbal confirmation of the new diagnosis, but not official word. Having rhabdomyosarcoma is good in a sense, since there's actually data on this kind of sarcoma, and the docs have a good sense of how to treat it. There are still open questions of course - in the carcinosarcoma case I was too young to be getting such a strange cancer, and now I'm on the older side of rhabdo. What this means is that they don't know quite if I'll respond like a child with rhabdo or like an adult (in a lot of adult cases the patients are into their 50s or 60s). In any case, we had a conversation with the pediatric oncologists that was fairly general in nature, given that the pathology had still not been set-in-stone finalized. They said basically we would need to get the cancer under control first with chemotherapy (systemic therapy), and then move onto local control (radiation or surgery) after that. Because the thing is so aggressive, surgery at first probably wasn't an option, given the amount of recovery time needed and the possibility that the cancer might grow again during that time. The one scary catch is that rhabdo does respond well to chemo in both children and adults, but in adults there tends to be more likelihood of recurrence once the chemo is stopped. Still, I choose not to take this kind of information too seriously, because there are so many factors that could cause different people to respond differently.

Into the mix of all this you throw in the idea of clinical trials. Usually these are research trials that the drug companies are conducting to see how effective their new drug is against the standard care. For rhabdos, these trials have been pretty good in terms of effectiveness, so it seemed like a good idea to be in one. In our case, there's this new drug that's shown to be effective in treating recurrence of rhabdomyosarcomas, but now they've set up a research trial to test its effectiveness at the first pass treatment. This was something that was being done as a national study, and the children's hospital was participating in the study for low/intermediate risk patients. The fact that they can even stage the disease tells you there's at least some information out there about the prognosis of this cancer. But they needed to know what stage I was in order to be in the study (and actually, to determine the treatment plan in general), and of course that meant we would have to do some more tests.

Basically the staging tests involved different scans to see if the tumor had metastasized at all. The bone scan showed up negative, so that's good, but to truly identify bone marrow involvement we had to get a bone marrow biopsy. In addition I needed a chest CT to see if there were any metastases in the lungs.

As of Wednesday, we had the chest CT scheduled, but the bone marrow biopsy was not scheduled til the following Wednesday. Given the holiday weekend, things were tight, and it felt like it would be forever before the biopsy was done and staging was complete. We met with the radiation oncologist on Wednesday, mostly just to meet her and catch her up on all our conversations. There were still no definitive answers until we had identified right stage.


An aside about bone marrow biopsies

So as you may have heard, getting a bone marrow biopsy is not a very pleasant experience. It's so unpleasant for kids anyway, that they usually just put them under general anesthesia in order to do it. Usually, the biopsy consists of two parts, actually getting a physical core sample, and pulling out some of the liquid for an aspirate. For the study, I would need bilateral biopsies (one on each side), plus extra samples of bone marrow aspirate (the super painful part) for some biology tests. Well, as it turns out, my ped onc had had this procedure done before, and he strongly recommended getting general anesthesia for it. Only problem was that they would have to wait to get an anesthesiologist to do it, which meant delays, which was why they couldn't do it til Wednesday. We spent a good part of that Wednesday fretting over whether we were once again waiting too long to do this, and now with 4 days of fretting, I finally said, if we could get it done on Monday without general anesthesia, I would do it. . . . And then came Monday...

Monday after Turkey Day (11/26/07)
We went in to see the peds onc at the children's hospital for our follow up appointment on Monday. First thing he says is, "unfortunately, the chest CT did show a few nodules in your lungs, the largest of which is about 4mm. They're very small, and likely they'll go away quickly with chemotherapy."

Huh. So...?

"So that means you're actually in the high risk category and can't be treated on the low/med risk protocol".

Double huh. Okay, so is there a high risk study?

"Well, there's a high risk study, and actually I'd feel more comfortable with you getting a more aggressive treatment anyway."

Oh, okay, I guess that's good. But...?

"But oh wait, the high risk study isn't open here, so you can't be treated on it."

I see. So why am I over here at the children's hospital away from my superstar doc (Dr. J)?

"So I guess there's no reason to be over here when you could be treated at the adult side with Dr. J."

I thought so. Well, check ya later, bud, cuz it's back to Dr. J for me.


And so, we went back to the adult side, that same day, when Dr. J scheduled an appointment for us. And indeed, that same day she finagled me a spot into the chemo ward so I could start infusion the very next day (couldn't start that particular day since the chemo slots were all filled up). Quite the ridiculous rigamarole to get there, but I finally started treatment that Tuesday (11/27) after months of trying to figure out what the heck was going on...

Whew.

To top it all off, the bone marrow biopsy ended up being this 10-minute procedure that the nurse practitioner did at my bed side on Wednesday. It definitely hurt and wasn't that pleasant, but it was not the all out painfest it was cracked up to be. (BTW, the biopsy results were negative!)