'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!)

Ooh! Ooh! PICC me! PICC me!

Happy (Belated) Turkey Day! (11/24/07)

So this week was another exciting episode in the world of doctor appointments, pokings, and pseudo-information gathering. As you may have noticed, I've started adding pictures. Some will be random, but some, like the one to the right, will be relevant. That thing on my right arm is the dressing for the PICC (peripherally inserted central catheter) that will allow the docs to put in the chemo drugs without burning out my veins. Ah, but I'm getting ahead of myself. It all started bright and early Monday morning...

(Wayne and Garth strafe across the screen, wiggling their arms and fingers up and down and saying "Doo de-loo! Doo de-loo! Doo de-loo!)


Slim PICC-ings
(Caveat: This post is all about PICCs. If you have no interest in such things - well, you have free will and all, so make your own decisions about whether you want to read on.)

Woke up bright and early on Monday morning (about 6:40am) to get to the hospital to have my PICC inserted. Typically chemo drugs can be pretty nasty on the veins and irritate the smaller ones (like those in your arm), so they usually want you to get a central line inserted. That way the meds can go directly to your heart and get pumped through the body from there. From my understanding, you've got two choices: a PICC, which goes in through the arm and up almost into the heart, or a port, which goes directly into the chest (and requires a minor surgery). Both are pretty much the same functionally, except that I'm not supposed to lift more than 15 pounds or do repetitive motions with my PICC-arm. Plus the PICC is a lot easier to pull out if it gets infected.

Anyhow, we got to the hospital bright and early, and actually, before the PICC saga could begin, I had to get an injection of radioactive dye for my bone scan later that afternoon. So first I went to nuclear medicine around 8am to get injected with some stuff that would circulate through my body and make my bone marrow glow (on the imaging scan) if anything suspicious showed up. My mom came with me for what would turn out to be a long, long day. The dye injection is just like any other injection, except the syringe comes in an ominous looking lead tube holder. It's a dose that's less than a CT scan, but for folks who are handling the stuff every day, it's good to have some protection.

After that, it was off to get a PICC line. From previous discussions, I had gathered the PICC was a pretty simple thing to put in - I thought it would take a few minutes, and then my mom and I would get to go home for a few hours while we waited for the radioactive dye to circulate and we could return for the bone scan itself. Oh, not so. It turns out that putting in a PICC is a fairly involved procedure, and there are only 5 or so nurses in the entire hospital trained to do it (and that's what they do, all day every day). Compared to surgery, I suppose it's not that bad, but it definitely takes a bit of time.

Step 1 - I go into the room and lie down on the gurney with my left arm straight out to the side, resting on a table. The nurse (Darcia) does an ultrasound of my arm to find a good vein to put the catheter in. Hopefully it's not too close to an artery or a nerve... luckily mine wasn't.

Step 2 - The nurse scrubs her hands and opens up this package wrapped in sterile blue cloth. She puts a sterile cloth over your arm with a hole in it for the site on the arm. She folds up one side of the cloth so that I can't see, or more importantly, breathe on my arm. She also gets on a sterile gown, hairnet, and sterile gloves to handle all the tools.

Step 3 - She scrubs my arm with about four different kinds of scrubs (soap, alcohol, some chemical whose name I can't remember, and that same chemical combined with alcohol). Each scrub has for some reason its own applicator, too - one's a sponge, one's a sponge attached to the end of a handle in which the scrub liquid sits (I think you can kind of crack the handle like a glowstick to make the liquid come out), one's a set of three oversized q-tips (alcohol I think), and one leaves your arm a nice shade of blue that makes it look like you've either been bruised really badly or had a run-in with an ornery smurf.

Step 4 - At this point, the blue cloth is shielding my view of the goings on, but roughly this is what happened next. She gives me three shots of lidocaine to numb the area (the shots themselves are probably the most painful part of the whole thing), and sticks the PICC line in with its associated guidewire. At this point my skin is mostly numb but I do feel a bit of pressure as she pushes the catheter in. She sutures the little holder clamp to my skin with one stitch, and then ties knots around the clamp to keep the catheter in its place.

Step 5 - The nurse puts on a sterile dressing so that we can walk down the hall to get a chest X-ray and verify the placement. At the X-ray area, she has a radiologist read the X-ray (here's where things start going badly). According to the radiologist, the catheter needs to go in a few more inches. Sure, why not? He's skilled at what he does, right? Anyhoo, we go back to the PICC room and Darcia pushes some more length into my arm/chest. Then, she bandages me up, and I'm good to go. . . or so I think. . .

As it turns out, radiologists don't always know what the heck they're doing. After getting the PICC, we went to grab some quick food before the bone scan, and I noticed that when I bent over in a certain way I would feel some weird heart palpitations. I thought that was a bit odd, so we went back to the PICC office to get Darcia to take a look. According to the X-ray (or rather, the radiologist's read of the X-ray) the PICC was in the right place, just above the right atrium in the superior vena cava. It's rare, but sometimes the PICC can "tickle" things in just the right way to cause an arrhythmia. Well, since I had to get to the bone scan quickly, Darcia decided to pull back the catheter about 1.5 cm without an additional X-ray, to get it away from any areas where it might cause issues. I felt okay after that and went to the bone scan, where I basically took a little nap on the table as the scanner moved over my body for 40 minutes (actually it was my body that moved, but you get the picture). We left the hospital around 2pm or so, went to the grocery store, and went back to the apartment where my mom was staying. All was fine and dandy til I sat on the couch a certain way, and there it was again - weird palpitations. Urgh. At this point it was getting close to 4:30 or so, and we called to find out if the PICC nurses were still around. After leaving a couple messages, we decided to just go back to the hospital. Darcia was luckily still there with her colleague, Nadinne, and so she took me to get another X-ray, after which she pulled the PICC back another 2 cm. So finally, I went home, thinking the problem had been solved.

Later that night, though, as I was sleeping I turned onto my left side, and had - you guessed it - palpitations. So, the next morning I called my adviser, who happens to be a cardiologist specializing in ultrasound, and he suggested coming into the hospital so he could take a look. Once again, we drove to Stanford (we had another appointment there that day anyhow), and he snuck us quickly into an empty room to do the ultrasound. David (my adviser) confirmed that indeed the radiologist had probably read X-ray incorrectly, because the tip of the PICC was well into my right atrium and almost at the valve leading into the right ventricle. So, once again we trekked down to the PICC office, where Nadinne (one of the other PICC nurses) was able to pull the PICC out another 4 cm. David even printed out a copy of the X-ray showing how much needed to be pulled out. So all in all, the PICC actually needed to come out about 7.5 cm from where it was initially. We suspect that it's mostly the radiologist's fault, since after the first X-ray, he suggested that Darcia actually should push the PICC in about that much. Argh - I think she had the thing in the right place to begin with. . .

Anyhow, that's the PICC ordeal in a long-winded nutshell. On the bright side, the CT folks at the children's hospital were ecstatic to see that I had a purple Power PICC when I went for my chest CT on Wednesday. Apparently it was the first of the kind they had seen, and they were able to use it to inject the contrast for the CT. Usually when people come in with a different kind of PICC, the nurses there have to tell them they have to get an IV anyway (which sucks, since one supposed benefit of the PICC is that it keeps you from having to get stuck all the time for tests). Why was I at the children's hospital, you ask? Well, that's for another post...

My PICC nurse, Darcia, applies a dressing to the PICC entry site. Notice the sterile gown, mask, and headgear...


Here's what the entry site looks like up close. The disk is a "Biopatch", which helps to curb infection.

Close up of the lines that they will use to infuse the drugs, draw blood, inject contrast, etc.

Bumps, lumps, and stumps

Thursday (11/15/07)

Well, space fans, today was supposed to be my first day of chemotherapy, but this rhabdo thing has thrown a wrench into the oncologists' plans. Treatment for rhabdo and carcinosarcoma are very different, so we need to wait for some sort of grand pathology consensus before proceeding. Stanford is going to do some more stains to look at this rhabdo diagnosis - in addition, we are sending slides and tissue to Emory for a third "tie-breaker" opinion. Hopefully they won't come up with something brand new. So, yes, once again, it's time to play the waiting game...

"Awww, the waiting game sucks! Let's play Hungry Hungry Hippos!" (Homer)

On the plus side, I've switched medical oncologists, since mine was going away for 10 days, and the new one is awesome. She's really on top of things and had already started to make things happen by the time we met with her. She's also the best sarcoma specialist at Stanford, so I feel I'm in good hands. I'll be getting a bone scan at some point, just to make sure it hasn't spread to the bone marrow, and on Monday I'm getting a PICC installed (it's a long catheter that goes into the arm and up into the larger vessels so they can infuse the chemo drugs without irritating the skin and smaller vessels too much). That way, when we hear the final diagnosis, I'll be all ready to go for chemo.

Still, on top of all this, there's more bad news. For some background, the worst manifestation of this disease started back in Sept right after Labor Day, when all of a sudden I couldn't urinate anymore (well, I wasn't fully voiding anyway) and had to go to the ER. I had felt a lump on my (shield your cyber eyes if you don't want to visualize) left buttock down near the midline and close to the prostate area a couple days before. It was there for a while, and I tried to have people feel it and figure out what it was. In the ER they didn't think much of it, and then it seemed to go away afterwards. It seemed to come and go over the course of the next couple weeks (bizarre, eh?) - it was there after my TURP surgery, but then it went away. By the virtue of that fact alone, the docs seemed to think it was no big deal ("Tumors don't come and go that quickly," said the urologic oncologist). In addition, it seemed to time its disappearances for when I was seeing my oncologist, so he never really felt it. A few days ago, it came back. Luckily (or not), it stuck around for my appointment yesterday, and my new superstar oncologist wanted to do a fine needle aspiration to figure out if it was just pus or if it was something else. Of course, you can probably guess it was something else. They came back 5 minutes later and said something was suspicious. Later that night, superstar called and said there were indeed tumor cells in the lump.

So now, somehow, the insignificant "butt bump," an in-joke among my family for the past couple months, is a real enemy, sitting there and taunting me. "Ha ha, none of your scans went low enough to catch me, eh?" (I imagine an evil French accent) "I am so elusive and slip away just when you're going to try and show me to a doctor..."

URRRGHHH.

I guess the good news is, it's still mostly contained - if it's rhabdo, chemo should take care of it, and if it's not rhabdo, surgery shouldn't be too bad. But really? AAAAARRRRGGGHHHH.

Mo' Info-mation, pleez

Just when you thought you had a diagnosis... (11/12/07)

Over the weekend we were thrown for a (possibly hopefully promising maybe please?) loop when our second opinion pathologist reported back, saying this could actually be a form of embryonal rhabdomyosarcoma, instead of a carcinosarcoma. Did you hear that? It might be an embryonal rhabdomyosarcoma!!

Well, don't all jump up and down at once...

It turns out, even though it's a longer set of words and kind of sounds more ominous, this could actually be a good sign. Maybe.

The original pathology did list rhabdo as a possibility, but the end diagnosis leaned toward confirming carcinosarcoma, which was the pre-op diagnosis. Carcinosarcoma, as we have discussed previously, is a rare crazy cancer that no one seems to have any idea how to deal with. The medical oncologists were basically making a chemo plan that would hopefully treat both components of the cancer, but in reality it was a best guess (or rather, two different best guesses).

Now, rhabdomyosarcoma is a cancer that typically is found in young children, and though it's still nasty nasty, there's actually some data on it. For example, I spoke with a pediatric oncologist this morning who was able to ascribe categorizations to the disease, like stages and groups, as well as risk levels - these terms were things that no one has really talked about before with carcinosarcoma. When we asked for the prognosis from my medical oncologist for carcinosarcoma, she basically said she could try and come up with some rate of recurrence, but that it would be pretty meaningless.

In any case, from what the pediatric onc doc said, I would fit into stage III (tumor > 5cm; mine was around 5.4cm I think), group II (all visible tumor removed, only microscopic cells remaining) of rhabdomyosarcoma. Assuming I'm still in that state at this point (there was no spread in the CT scan 2 days before surgery, so unless something else has shown up in the past month, I should be clear), the prognosis is good and I'm in the low risk category...

But I'm not celebrating quite yet. . . we will get final results from the extra tests/stains they're doing on the tissue samples tomorrow. Most likely I'll still be going in for chemo on Thursday, but the regimen will depend on the pathologists' consensus on the diagnosis. Hopefully they'll agree on something by then or we may have to postpone a few days.

Bottom line: For stuff like this, always get a second opinion.

Keep yer fingers crossed!

Waking up is hard to do

Quick update on today (11/6/07)

So I haven't been sleeping that well, but at least my urinary control is getting a little better, day by day. It's still quite frustrating but not nearly as bad as it was the first day. I'm trying not to build up stress, but it's hard when my outlet used to be exercise, and now I can't do much of anything. Walking is okay but hurts after a little while. I'm starting to do a bit of tai chi again, and that feels pretty good, but I'm being careful not to overdo it.

Over the weekend we also went to a Chinese doctor who gave me some herbal supplements to help improve digestion and generally help my immune system. It seems like all Chinese doctors tell you that you have poor digestion, but maybe it's because it's true... I'm not sure, but talking to our western doctors it doesn't seem like it can hurt (we also got some consultation from other Chinese docs as well). Anyhow, I have to keep building up my strength and energy before the chemo...


Hospital Stay: Surgery
Now back to the past...

So when we last left off, I had been drinking the nasty bowel prep liquid and trying to keep my mind from worrying too much about the impending surgery in the morning. At the same time, I was mentally preparing myself to wake up from surgery with a stoma in my abdomen and also to have to stay in the hospital for 10 days...

The nurses came into the room at 4:30am on the day of the surgery; my mom and sister showed up at 5am. There wasn't a whole lot to do to prepare at that point. I got up, went to the bathroom, brushed my teeth, and did the normal things one does in the morning I suppose. Then the transport guys showed up with a gurney and whisked me away to the pre-op waiting room.

There I waited with mom and sister or mom and Serena (only could have two at a time) while people came around and asked me questions, confirmed my name and such, and made sure that I knew what was going to happen that day. The anesthesiologists came in as well to ask if I wanted to have an epidural put in place for pain control (this would actually turn out to be more trouble than it was worth, but at the time it seemed like a good idea). My surgeon had recommended this if by chance he had to remove my bladder - that is, the pain would be much worse than if it was just the prostate, and the epidural would help to control that. Sounds fun, eh?

So you may be thinking, "Epidural... epidural... where have I heard that before?". Well, an epidural is what they give to pregnant women when they're about to have a baby - it's a small tube that they insert into your spine to numb the lower portion of the body. I guess it's a little more effective than other medications because they can deliver stuff straight to your abdomen and pelvis, and you don't get as woozy as you would with other more systemic medications. Plus they give you this little button that allows you to give yourself a shot of one of the three pain medications, though I'm kind of convinced that that button doesn't do a whole lot.

Anyhow, so I opted for the epidural, and eventually when about 7am rolled around, they took me out of the waiting room and into the OR. I have to say I didn't actually feel that scared. I don't know why I didn't feel scared - it seemed like I should have been freaking out at that point, but I felt relatively calm about going into surgery. It's funny, because the actual surgery is really easy for the patient. The worst I had to knowingly endure was the doctor putting in the epidural itself. I was kind of waiting for it to hurt a lot or feel weird (it's a strange sensation to have someone poke you in the back like that - some how not being able to see what they're doing makes it a little scarier I guess), but it really wasn't that bad. Once they had it in, they told me to lie down on my back and breathe into the oxygen mask while they administered the anesthesia. Two or three breaths in and I was out...

"Alex! Alex! blah blah blah! Alex! blah!"

That's about what it's like when you wake up - all I really remember was hearing my name a bunch and then I was in the post-op waiting room. I'm sure they were actually saying things like, "Alex, can you hear me? Alex, open your eyes!" but really all I remembered was hearing my name. First thing I asked the nurse was what time it was - she said about 1pm. I was doing the math in my head - my surgeon said that the prostate procedure would take 3-4 hours; if they had to remove the bladder it would be about 7 hours. I was trying to deduce from the time what they had ended up doing - I thought they had started around 7am, so in a total of 6 hours... Seemed like there was a chance they only took the prostate, but I was too afraid to ask. I had a free hand that wasn't tied to an IV, but I was afraid to move it over my abdomen to check. I figured I'd just wait for a doctor to come tell me something.

Finally the surgery fellow came in and asked me some questions... he didn't tell me anything though, so I called him over to ask what they had done. When he told me they only took the prostate, I thanked him profusely for the news. Oh my god what a relief. Then the surgeon came over and confirmed, and I had nothing but love for the guy. Kind of silly, really, because objectively, he really didn't have much to do with the decision. Of course he was going to try to spare the bladder, but if the cancer had gotten out, it would have decided whether or not he had to take the bladder. Still, I was grateful, and so so soooo relieved...

Catheter-free and learning to pee

Hey folks -

Just a quick post today, but real-time... So I ended up going to the doctor on Wednesday (Halloween...) to get the Foley catheter taken out (I think it was getting infected anyway) and to talk to the medical oncologist about our next treatment steps. For those of you who don't know, the medical oncologist is the one who takes care of the chemotherapy treatment plan, while the radiation oncologist deals with - you guessed it - radiation therapy. Anyhow, it turns out they want to start me on chemo as soon as possible, so I'm going in for the first dose in two weeks. It'll be a 3-week cycle, with 5 days of treatment (I'm going to do the first cycle in the hospital as an in-patient and see how it goes; may switch to outpatient after that) and then 2-weeks off, for 4 cycles (3 months). The drugs will be IV drugs with all sorts of nasty side effects - nausea, fatigue, hair loss, etc. I'll have two to treat the carcinoma portion of the cancer, and one to treat the sarcoma portion. After the second cycle they said they might start radiation as well, but that all depends on how I'm tolerating the therapy.

It seems sooner than I thought, but after talking to my surgeon more on Wed, it seemed like there was some concern about the margins of the surgery. There were two spots where the cancer had gone outside of where they cut (in fact, it had gone out of the prostate capsule on the left side but he managed to cut most of it out), and he seemed concerned about the spot which was down near the urethra connection on the left side. Both were microscopic in nature, but they want to be sure to get everything.

In the meantime, I've been struggling a bit with getting urinary control back. The first day or two has been tough, but I'm feeling a bit more hopeful today. For normal prostate patients it can take months to get back normal control, but I'm hoping my youth and health will help me recover more quickly. For now, though, I feel a bit like an incontinent old man (sorry to all those older men out there - when you were 28 you probably would feel strange having these problems, too...). Mostly the problem is just some leaking when I stand up, though I'm starting to be able to control that. It almost makes you want to have the catheter back in. . . as much as a pain as that is, there is some convenience to not having to go to the bathroom all the time (esp. at night - with the night bag you can basically sleep through the entire night no matter how much you pee). Luckily they make these "male guards" now, which are basically like thick maxi pads for guys with urinary problems. They work amazingly well - props to the diaper industry for coming up with these super-absorbing materials.

K, that's it for now. More on the old hospital stay later...

Hospital Stay: Preparation

10/29/07 - Update on today

So first, I guess the update on my current condition. Been walking around quite a bit, but I still can't handle too much strain. Dad was in town this weekend, so I was out and about with him and my sister a bit, though taking plenty of sit breaks. I went out for brunch on Sunday with some friends - I suppose one of the good things about all this is getting back in touch with old friends who I don't see too much - though man, the portions at Stacks are gi-normous. The catheter's getting to be a bit annoying, but it's not too bad when I switch to the leg bag to walk around Anyhow, all in all not feeling too bad. I've got my follow up appointment with the doc on Thursday, so I guess I'll know a bit more about the upcoming treatment plan then.


Hospital Stay: Preparation and Anticipation

I felt quite healthy in the days up to the operation, but this only amplified the surreal nature of what was, or what was possibly, about to happen. That is, to know that in a few days I might wake up without a bladder was just really bizarre. I guess the only way to prepare for it was to assume the worst, so that I might be pleasantly surprised. The trick is to not hang your hopes too much on being pleasantly surprised...

As the time to surgery drew closer, I started to feel a bit antsy. There was one day when I was just really irritable. I certainly cried a few times, but mostly I didn't feel scared or too worried. I don't know, maybe I was just in shock and so not feeling much of anything. It of course helped to have my sister and mom and other friends around, but mostly it just felt really strange. It didn't help that I was running around to sperm banks and fertility clinics in those couple days before checking in to the hospital, although I guess it kept me busy at least. I also made it a point to hang out with friends and even convinced my mom to make her world-famous Peking duck (a rare occasion, as usually she only does this on Thanksgiving and at Christmas).

I had a follow-up consultation appointment at UCSF on Wednesday (10/17/07), when I also started my clear liquid diet (apple juice, white grape juice, cranberry, water, Jello, chicken broth). Yum! My mom went a little overboard making Jello the night before, but it was well appreciated. Actually I think my sister just - 2 weeks later - threw out a couple tupperwares' worth that we never quite got through). To top it off, I was also scheduled for a PET/CT that day, which meant I wasn't able to eat the Jello or even drink anything besides water until about 3pm that day. The PET/CT combines PET, which allows you to see overly active areas in the body (like tumors), and the CT, which allows you to see anatomical structures. Luckily the PET/CT didn't show any active areas besides what was in the urinary tract area. This scan wasn't good enough to show whether things had spread to the bladder, but at least it showed that it hadn't spread anywhere else. The gist of the appointment with the docs was that though there were some subtle differences in the way that the UCSF pathologists read the biopsies compared to Stanford, nobody said surgery was not the first step...


Pokey pokey

So finally Thursday came and we checked into the hospital into the ambulatory treatment unit (ATU). I guess that's where they place pre-op patients, or at least folks who can walk around. They gave me a huge room that normally should have five patients in it, but it seemed they'd converted it to a storage room for miscellaneous stuff like a gurney, wheelchair, bookshelf, etc. and I otherwise had it all to myself. We showed up around noon and were basically sitting around for a while, with intermittent interruptions from the nurses. They sent me down to get an X-ray (in a wheelchair, I guess it's policy), took some blood samples, and poked me three times before getting an IV started. Eventually even the one they ended up starting had to be replaced (I have a huge 3-4 inch wide bruise there still). I don't know why my veins seem so troublesome to some people - the last time I was in the hospital they didn't seem to have much difficulty. Though when I went for my first CT scan in July the resident and nurse poked me 3 and 2 times respectively before getting the IV in there. I've been poked so many times for different samples that at this point it doesn't really bother me, but I sure do appreciate it when the nurse can do it quickly and on the first try.


The "stoma" nurse

At some point in the afternoon the "stoma" nurse came in to describe what my potential new pee hole was going to look/be like. Basically, when they take the bladder out, they create this replacement pouch out of part of your intestine. They cut out a section of the intestine and sew the remaining parts back together. Preserving the blood supply to the pouch, they then connect one end to the ureters, which bring urine from the kidneys to the bladder, and the other end they form into a small opening that is brought to the surface of the skin by pulling it through a small hole there. They pull that part out and then sew the edges to the skin around the hole. So you basically end up with this bright reddish circle with a hole in the center on your skin, and that's the stoma. The hole is kept closed most of the time by the muscles in that area. The weird thing about it that I didn't realize was that the stoma would be wet and mucousy. I had previously imagined it would just be a small, dry hole in the skin. I'd have to keep it covered with a bandage when wearing clothes, but otherwise there was no problem getting it wet, swimming, etc. Okay, not too bad I guess. I knew already that if they had to put one of these in I'd still be able to do all the things I normally did/could. It was just weird to have the nurse describing this to me so matter of factly, then even weirder when she took a Sharpie and drew a big dot on my abdomen where the stoma would be.


The "cocktail"

So finally all the poking and prodding had subsided (at least for the time being), and it was time for my "cocktail". Basically, because I was potentially going to have my bladder removed, they wanted to prep me as though they would need to use the intestine to create a new urine collection pouch. This of course meant that I had to make sure my system was totally cleaned out, much like you would for a colonoscopy, for those of you who may have had that lovely experience. So essentially you get to drink 4 liters of this nasty, nasty liquid that tastes like thick, salty water with (in this case) a hint of artificial pineapple flavoring. Apparently they make other flavors but this was the only one my hospital had. When you try a sip of this stuff, it's not soo bad, but when you're on your second liter or so, it gets pretty aweful. Ice helps for some reason, and chugging it a cup at a time is definitely preferable to sipping. A cheerleading/cup refilling squad is also useful for motivation. So about 20 minutes after the first cup or so, you basically start having to go to the bathroom to have diarrhea. The urgency is not so bad that you can't make it there without running, but it's not exactly a pleasant experience.
Pretty much every time I came out of the bathroom I would pace around the room glaring at the refilled cup of liquid, and my heart would sink when I saw how little of the jug I had gotten through. Slowly but surely, though, over the course of a few hours, the level started to come down, and eventually, with probably an 1/8th of the jug left, the nurse said my toilet water looked clear enough to stop. Ugh. My bowels didn't quite get the message and kept putting out stuff for a couple hours after that, but mostly it was over.

Now it was just trying to keep my mind off things and get some sleep before getting awoken at 4:30am the next morning. Through that afternoon and evening, I kept feeling thoughts creep into my head about the possibilities of the upcoming surgery. Would this be the last time I would be able to pee normally? Should I be more worried than I was? I felt like I had mentally prepared myself for what was coming, but did I really know? Was I sure I was prepared? I decided to put those thoughts out of my mind. Serena stayed over and we watched the Transformers movie (new one) on her mom's portable DVD player before going to bed. Probably a mistake to lose sleep for that, but it was definitely a good distraction.

Sperm Banks

A blurb about today (10/24/07)

Woke up today feeling pretty good - I slept through the night without waking up and actually got up at a reasonable hour (around 9:30am). Finally had a couple of bowel movements yesterday (hee, hee, he said poo), though I'm not sure everything's quite awake down there. Really each day the pain seems to get less and less, as I suppose it should, but it's much more noticeable than I anticipated. I almost feel like I'm cheating somehow to have gotten off so easily from the surgery. Almost.


And now to the sperm...

One of the big problems with removing the prostate is that it makes you sterile. So basically, the doctor recommended I bank as much sperm as possible before the operation. Afterwards there's still the possibility of removing sperm directly from the testicles, but once chemo or radiation therapy starts, even that option goes away.

I really hadn't anticipated through all this having to think about how/when I would want to have kids. I suppose I've always thought I wanted kids, maybe one or two, but with everything else going as it was in my life it seemed like that and any decisions related to it would be a long way off. Now all of a sudden I was having to plan years in advance just to have the chance to have kids somewhere down the line.

So I had my first appointment at a local sperm bank on the Friday (10/12/07) before the surgery was supposed to happen. This whole process has been surreal, but never did I think I'd be walking into a sperm bank with my mom, my sister, and my girlfriend. Luckily, they're quite professional (not that I really expected less). At this particular place, you go in and talk to the person who helps you with the paper work, and the lab is actually across the hall. So I guess there's that barrier of privacy set up already. So we sat down with the receptionist/agent/account manager (?? what do you call that person ?? sperm banker?) and described the situation. Since I had just had the TURP (transurethral resection of the prostate) surgery a week or two before, there was some question in my mind as to whether I'd be able to give anything at all, so before doing all the paperwork and such I guess I had to see if all the equipment was working properly.

The woman led me across the hall into the lab, where there were folks in clean white lab coats and hair nets working at benches centrifuging this and pipetting that, looking in microscopes and such. Then one of the lab techs hands me a cup and shows me to a room, gives me a knowing smile and says, "Take your time, and don't forget to lock the door." So in the room there's a sink and a small TV stand with an integrated TV/DVD player (with headphones) on it. And of course there's a selection of DVDs and magazines of the type you would expect to find. All in all it's like a 14-year-old's ultimate fantasy refuge, but it feels not a little weird to know that outside are people doing their business, down the hall are construction guys doing some remodeling, and across the hall is your family, waiting to know if you can still ejaculate normally or not. So, yeah, surreal.

Turns out I was able to do the deed and produce a sample, though it was a bit bloody from the surgery, and it certainly didn't feel normal. I closed the cap on the little plastic cup, walked out and gave it to the lab tech. We had to fill out some paperwork, so I started doing that while we waited for the prelim results. About 20 min later they were able to tell us that unfortunately my motility was very low (3% - normal is more like >40%), even though the count was pretty high (40 million). Lots of possible reasons for this, but most likely the cause was the disease itself and/or the trauma that the area had sustained through the TURP procedure. A couple days later we found out there were no moving sperm after a test-freeze of part of the sample. There are of course ways to have a baby without swimming sperm (as long as they're still alive), but the techniques are pretty advanced and involve harvesting eggs and injecting the sperm directly into the egg.

I guess I can't say I was enormously upset by this news. The idea of having kids seemed like such a long ways away, and since there were options for having a baby with my own genetic material, it didn't seem like the end of the world. I guess if I were married already and thinking about kids when all this started happening, I might feel a little more distraught. For now, though, it feels like a future inconvenience (though I know when the time comes it will be a much larger challenge to overcome than the word "inconvenience" implies) and certainly with the surgery still looming it was not really a hurdle I was prepared to put energy into. Still, it was upsetting to know that even this, something that I had taken for granted would be straightforward and natural in the future, was not going to be so simple after all.

We decided to try another sample the following Monday, to see if Friday was just a fluke. After that turned out about the same, we went to discuss the options with the fertility clinic. The motility results were basically the same, and after consulting with a urologist who specializes in fertility, we found out that even drawing samples directly from the testicles would not necessarily result in better motility rates. Everyone said to bank as much sperm as possible before the operation, and so, giving two days rest, we went back one more time on Wednesday to give a final sample.

All in all, I now have 7 or 8 vials processed and frozen in the bank, which will be at least that many attempts at a child. Depending on the treatment plan moving forward, we may even be able to take more directly from the testicles. I suppose we'll have to consult with the docs on that. Certainly through this part of the experience, I have a new appreciation for what a sperm bank could mean to a family, as opposed to what juvenile imaginings might paint it to be.

Out of the Hospital - 10/23/07

Well so i don't know if the tone of this is going to change now that I know that people might actually read it. . . I guess we'll see. I'm kinda new to the whole blog thing, and so it seems to me the conundrum is chronology, really. Like, ideally in this post I would talk about the next thing that happened after the last post, right? But it seems like what people probably really want to know right now, is how I'm doing right now, eh? Cuz if I just go chronologically, who knows how long it'll be til I get to now, and by then, something crazy exciting may have happened... Ah, and so I guess I answered my own question - the nature of the blog has already changed simply by the admission that I'm considering the will of the people :P (well, the potential people who may be reading this...). I wonder if they'll dare/care to read the other posts? I wonder if I'll start referring to them/you in the second person instead of third? Anyone ever read Dear Mr. Henshaw? It's one of those Judy Blume type books where the kid starts a diary but doesn't know who his audience is so he pretends he's writing to Mr. Henshaw, who I think was one of his teachers or something.

Well, okay, then, I guess I'll start with now, and fill in bits and pieces later. So, I got out of the hospital yesterday (10/22) and was feeling decent though slightly nauseated (as a side note, the word "nauseous" is actually an adjective describing the thing that makes you "nauseated" - A quick search gives you an explanation. Even I usually just say nauseous, but it's funny to hear some of the docs and nurses use nauseated, even after you describe your symptoms as nauseous: "Oh, I'm feeling a little nauseous." "Feeling nauseated, eh? Well I'll see if I can get you something for that." - well I guess it's funny to a grammar/word usage freak like myself...). They let me start eating solid foods a couple days ago, so I'm eating fairly normally, which is nice after a few days of only clear liquids, nasty diarrhea inducing liquids, and no liquids at all... but that's for another post.

Anyhow, so I've got Vicodin to keep me out of too much pain, but every day the pain seems less and less. It hurts mostly when I get up to walk around, or when I try and cough or laugh or basically do anything that uses the abdominal muscles. For instance, I was just watching some Flight of the Conchords clips on YouTube, which had me laughing so much I really can't watch anymore right now. My favorite so far is "The Humans are Dead". So that's the main thing I guess, is just abdominal pain. I've got stitches from the incision just below my belly button - the scar is about 6 inches long though I suppose not quite a scar yet - and a little hole next to the incision area where they had a drainage catheter stuck for a while. I have to keep that area dry for a couple days but it should heal up pretty quickly (first order of business when I got home was to Saran wrap the catheter drain area so I could take a real shower). They also shaved the pubic area some, but not thoroughly, so it felt strangely prickly when I first ran my fingers down there. When I first got out of surgery that whole area would kind of jump at the touch when people tried to feel around, but it seems to be much less sensitive now.

Lying down generally feels pretty good, sitting can be okay, but standing up and walking are still the most painful (though it's also the best thing for me to be doing). I have a Foley catheter inserted in my penis to drain out the bladder, but that doesn't cause too much aggravation. I can switch it from a big bag that takes a long time to fill up to a leg bag that I can strap to my calf. Inside the house the big bag is actually more convenient, since you want to have it below your bladder at all times and you can't put your legs up when you have the leg bag. Funny thing is that the last time I had a catheter they didn't give me a big bag, which I guess is pretty important when you're sleeping to keep the urine from flowing back into your bladder and causing an infection, which I think is exactly what happened. I guess you can't trust the emergency room to give you comprehensive information or treatment... For those of you following along, that infection episode was right before I had the TURP surgery.

So, yeah, all in all, I feel pretty good right now. Don't have a whole lot of energy, but my mom's keeping me company at home and there's plenty of entertainment (books, TV, video games, the world wide internet...). Frankly the hospital stay was much shorter than I expected, so I'm just happy to be out and recovering so quickly.

Diagnosis

Wow. So it's a bit late for this, but frankly things have been busy, and I wasn't sure this was the best place/forum for posting stuff. Anyhow, here goes: I have cancer. That sounds weird. Somehow it sounds so much better to say, "Well they found a carcinosarcoma in my prostate." Okay, maybe not sooo much better, but it seems to sound better. I have cancer. It doesn't even sound like a proper sentence. It's like, "I have book" or "I have monopoly board." I suppose it can't be "I have THE cancer." No, that's not quite right either. Well, in any case, I have it, and it's there, and hopefully next Friday they'll take it out.

Lessee, do we want all the details? Why not, as this is the first post on the subject. Here's a brief run down of what happened:

June - started seeing blood in my urine, went to see the urologist. Lots of blood tests, urine tests, everything negative - no fever, no chills, no signs of infection.

July - first aspiration - dude shoves a probe up my butt and sticks a needle in the prostate - they drain out fluid, they culture it for bacteria - nada.

August - second aspiration - pretty much the same as the first, a bit of fluid,
not much to go on - but they did find... e. coli! So... antibiotics for that, but most likely it was a contamination from the needle being in the rectum and such

Sept - at some point around the 5th something got really inflamed in my left buttocks and there was this lump there. Then, it became harder and harder to urinate, until I really couldn't empty my bladder and had to go to the ER. There they put in a Foley catheter, which I took home for a couple weeks. I also had a fever going into the ER and a little afterwards, but some antibiotics and vicodin helped keep that and the pain from the butt lump in check.

Mid Sept - Finally, I went in for a third transrectal ultrasound and biopsy of actual tissue - they still didn't find much, mostly dead tissue and a little bit of cartilage - that sent up some flags. Prostate has no business with cartilage. They tested for germ cell tumors but came up negative.
End sept - I was scheduled for a TURP (transurethral resection of the prostate) to grab out more tissue and get a better reading on what this thing is. Of course a few days before the surgery I started having intermittent feelings of urgency that would make me clench up my abdominal muscles and such. Then I started having fevers, and at one point they hit 101.5, so into the hospital I went. They gave me IV antibiotics for about a day and a half and were then able to do the surgery once the fever came down. They suspect this was a side infection from having the catheter in.

Oct. 4 - Diagnosis day. It's a carcinosarcoma. It's rare, and it needs to come out.
Oct. 5 - Unceremonious call from the oncologist - they'll need to remove the prostate, and maybe the bladder. That was a tough day.
Oct. 6 - CT scan to see if it's grown or changed in anyway. Fortunately it looks about the same on the scan and doesn't seem to have spread anywhere. Two lymph nodes on the right side are enlarged, but this could be from the infection/prostate inflammation after surgery.

Oct. 10 - Second opinion appt. at UCSF. The doctor lays out some of the possibilities given the pathology, we schedule a follow up for next week on Wed.

Oct. 11 - The urologic oncologist lays out the plan, and it's not terribly specific. They'll have to remove the prostate, and then they'll see when they're doing the surgery whether or not they'll have to remove the bladder. They can't see the distinction, but they can do real-time biopsies. If they do have to remove it, they can reconstruct a pouch from part of the bowel, but then I have to empty that with a catheter through a stoma (port) in the skin every 4-6 hours. If they take just the prostate, they can reattach the bladder to the urethra, I go home with a catheter for two weeks and eventually I should be able to pee normally. I'm hoping to wake up with a catheter strapped to my leg. Chemo and radiation therapy will be dependent on what the prostate tissue looks like. Surgery is scheduled for Friday the 19th. If that's too soon, we'd have to wait until the 31st...

Oct. 12 - Schistosomia-what? So, at some point throughout all this, the infectious disease doctors found antibodies for the schistosoma worms (freshwater worms found in exotic locales) in my blood. They checked urine and stool and found no eggs, and the pathologists found nothing either. I went in for a follow up appointment with ID and they said, well let's treat it anyway. The treatment? Two sets of pills twice a day for one day. Would that were the whole problem...

Well, that brings us mostly up to date. . .

flip-flopping

So when I listen to music these days, I usually just listen to the iPod on shuffle (who has time to deal with play lists?). I know, I know, it's people like me who are contributing to the death of the album, but hey, sometimes you just want random tunes (I do also occasionally listen to whole albums) - but I digress. The point is, today a couple of Jewel songs came up in my rotation, and at one point I really, truely thought Jewel (this is her first album) was good. But just today, not having heard them in a while, I kind of thought to myself, "blecch! what is this stuff?" (also my first reaction to cole slaw). So clearly my musical tastes have changed since high school, but also college, etc.

Just got me thinking, what a shame it is that politicians are so beholden to things they said or did so many years ago? Why do we dehumanize our political representation to the point of expecting them to always "stand for something" and to stand for it consistently? I suppose you want some core convictions to be guiding decisions, but why the heck do they get skewered for admitting their mistakes? It only seems to make them afraid to do so, and subsequently to stay the course no matter what. And I'm not sure that applies to just this current federal government either. I suppose the government should have to live up to certain higher standards than we expect of say, the guy working at Jamba Juice, but there has to be some leeway for human nature... of course, how much and to what extent is always the question.