Wednesday, January 30, 2008

Pain in the Butt


Unbelievably, it's already 2008, and almost February for that matter. How time flies when you're having fun/getting radiation therapy every day. . . Okay, you'll have to excuse any cheeky humor that finds its way into this post. I've been reading David Sedaris' Naked, which is pretty much hilarious. He writes about his life in terms of these little vignettes - stories about hitchhiking across the country, going to summer camp, picking apples in Oregon - but he does it in such a way that makes everything just believable enough to buy into it, but just unbelievable enough to be in shock and awe at the situations he describes. Yes, I am coveting his writing talent.

Anyhow, here's the quick update: Today was day 21 of 28 days of radiation - just 7 more days to go!! So far so good - my neupogen shots have been keeping the WBCs (White Blood Cells) nice and happy, so we've been able to plow along with the radiation treatments. It's a bit of a pain to drive into campus every day, but I guess that's what I'd be doing anyway. The real pain in the butt is, well, this pain in the butt I've been having. I'll spare the gory details, but let's just say I have some sort of tear or cut or something that makes every BM (Bowel Movement) very painful. I've tried sitz baths, suppositories (reminds me of middle school, when we used to make off-color jokes about how Lee Harvey Oswald took a shot at JFK from the Texas School Book Suppository - not sure the joke really went much farther than that, because I'm not sure any of us really knew what a suppository was - except that it was supposed to be funny), lidocaine (numbing gel), lotions, but nothing seems to be making things heal up. Apparently this is just one of those things you have to wait out. Who knew simple bodily functions like pooing and peeing (see previous posts on Foley catheters and painful urination) could cause such trauma in one's life? Let that be a lesson to all you people out there, taking your pee and poo for granted. You'd better start appreciating the smooth workings of your respective urinary and gastrointestinal tracts, 'fore I come ov'r thar and whoop you with mah crotchety old man's cane. Jus' let me git outta this rockin' chair, first... (much exaggerated fist shaking ensues).

Wednesday, January 16, 2008

Round 3 for real

Hmmm... I wrote this post while in the hospital last week, but never actually posted it. I think to save on the time-lag confusion, both in writing and in reading, I'll just post as is and add on separately. Enjoy the time-travel experience!


Well the blood counts managed to improve over the past week, so I'm in the hospital now getting chemo round 3. Because I'm getting radiation therapy at the same time, I'm on a slightly different set of drugs this round (normally I would be alternating sets of drugs anyway). Supposedly this is the easier set to tolerate, but because of the way it can affect the kidneys, they need to have me on mega doses of saline solution to keep me hydrated. It's not too bad, except that I end up having to pee all the time.

For those of you following at home, this round is ye olde etoposide and ifosfamide, which cause the usual nausea, low blood counts, fatigue, etc. Since my counts were low last week, they're only giving me 80% of the normal dose for this drug, which means ostensibly only 4 days instead of 5 in the hospital. Unfortunately, we got started late on Monday around 5pm, so I'll end up being here til Fri morning anyhow. Not a huge deal, since I have to be here for radiation at noon anyway, but it would have been nice to have a little less time in F-ground.

On the plus side, my roommate of the past couple of days apparently bugged the IT people here enough to get access to the wireless network, and he was generous enough to share the password (along with some oatmeal cookies his friend baked for him) with me. It was pretty refreshing to share a room with someone who was actually a little closer to my age and able to walk around and chat and hang out. Mostly my roommates have been older folks who are pretty much confined to their beds and/or don't speak English.

(Note from the present time: my roommate of the next couple days was indeed an older gentleman who didn't speak much English and did a lot of whimpering. Very, very kind man - he would always wish me well when I saw him, but let's just say it made for difficult sleeping. Luckily, one of my nurses finally gave me earplugs the last day or two...)

Monday, January 07, 2008

Count for the Down

(1/07/08) 5:46 pm

Well, after all my midnight rantings and loading of Family Guy DVDs into my backpack, it turns out my counts were too low to start round 3 of chemo today. It's a normal thing, to have the counts go low, so the docs said there's nothing to worry about. On the plus side, they also mentioned that the butt bump has shrunk (on CT scan) to a measly 8 mm by 3 mm. They weren't even able to see the lung nodules, but this was also a low-resolution CT, so we'll have to wait for a better scan in the future to be sure about those. My white blood cell count was the culprit this time around - platelets and red blood cells are good. Probably this will mean more shots of neupogen after the next round (that's the injection I have to take every night after a cycle to get my counts up). The other plus is I get another week of semi-normal life before starting again (yay!).

I've had a request for links to Cosmos Education and other interests o' mine, so I'm going to start a links column on the right (thanks Jeff, for the idea) - feel free to pass these along if you find 'em interesting. Other random good news - we just got a big donation to Cosmos to continue our work in Kenya and Zambia (woohoo!). K, that's it for now...

Ready for Round 3

(1/07/08) 1:08 am

So it's 1am and by all rights I should be in bed. Seemed like a little late night message was in order, though. I suppose it'll get easier the more of these I do, but there's a certain amount of dread that comes this night, the night before chemo. I'm not sure what it is, really. On the one hand, it's a positive thing - another dose of curative chemicals to wash out those evil little buggers hanging out in my body. On the other hand, it means more days in the hospital, a place in which I would prefer to spend the least amount of time possible, as a patient anyway. In my research I come into the hospital all the time - there's something fun and exciting about that. From the other side, there's lots more pain and frustration, but there's also gratitude to be found in the system that is helping you get better.

It's funny how people always say that this sort of event (insert life changing occurrence) makes you come out the other side vowing not to take anything for granted. To some extent I think we all wish to live our lives this way, with or without any life-changing event - to appreciate every little act of kindness, every moment with friends and family and the people we care about - even the time with the people close to us who drive us nuts, because deep down somewhere there's a link back to what makes you who you are. We feel beholden by a new lease on life to appreciate every detail, every moment - but honestly, doesn't that in itself become exhausting? Perhaps some people can do it, but I like to think the rest of us merely try to stay afloat, and keep the balance so that most of the time we're netting positive.

In someways it's like a new year's resolution with more umph behind it. "Man, when I beat this thing, I'm going to go out and blah blah blah like there was no blah blah!" And to some extent, I think that's true. For me, once my chemo is done, my plan is to not spend any more time doing anything that doesn't get my excited and pumped up in the morning (who knows how I'll figure out what that is, but I'm sure I'll figure it out somehow). In the meantime, though, I have the reality check of the practical, daily routine. And this time, that means, get to go to the hospital in another few hours and sit there for 5 days while the drugs do their work. Let us say that does not create in me a huge sense of excitement.

However, at this time, I choose to focus my energies outward. This time, going into treatment, I've decided not to muse with an "oh woe is me" attitude for having to get through another five days of treatment by the best doctors and nurses in the country (world?), figuring out what books and video games and DVDs and computer software will keep me most occupied . . .

Instead, I've been thinking a lot about my friends in Kenya. About folks whose country was on the verge of a peaceful, democratic election and transition of power but who now face nightly screams and gunshots outside their windows, and riots in the streets. I'm worried for their safety of course, but more importantly I'm worried for their spirit, their ability to rebuild and continue on after such events have passed.

When we think about not taking things for granted, we usually talk about cherishing moments with our friends and families, enjoying nature, paying attention to our health, etc. Few of us go as far as to be grateful for a stable system of government, for a mostly peaceful existence despite being at war (not meaning to go into anything about the current state of US wars here), for the ability to continue on with our daily lives as if nothing of consequence is happening in the world. On the flipside, if one chooses to take an interest in these things, if one wants to be involved in international politics or is touched by these events in some way (perhaps through family or friends or what have you), how does one then balance the dichotomy of living a life that contains Wiis and iPods and sweet digital cameras with the desire to be a part of something greater, something that may influence the lives of those people, who not only have none of those things but who live in such a fragile part of the world? How does one even complain about hospital food when there are people struggling to get any food at all?

Anyhow, I don't mean to get too philosophical here, but this is what happens when I muse late at night AND decide to write about it. As I go in for round 3, to all my friends in Kenya - Susan, Isaac, Kanja, Evalyn, Bridgit, Vincho, Neema, Stella, and the whole crew, and to the boys in Zambia, who are living on the edge and struggling to survive - Theo, Billy, Ernest - stay strong, stay positive, and I'll do the same.

Friday, January 04, 2008

Happy New Year, Radiation Nation


Happy New Year Folks! I managed to survive the holidays without being completely under the weather. In fact, after my discovery of the drug-induced restlessness, my ability to feel like a normal person probably increased tenfold. We had a nice holiday, though it's the first Christmas (and birthday) I've spent in California, despite having lived here for so long. Something's not quite right about Christmas on the west coast - I can't really put my finger on it. Maybe it's the prevalence of non-deciduous trees that refuse to lose their leaves, maybe it's the lack of bone-chilling cold weather (though I admit it gets quite nippy 'round here). In any case, it was nice, but certainly not the same somehow.

It was also the first time my mom and her partner Dennis were in the same place as my dad and his new wife, and fortunately the universe did not implode. Everyone seemed to get along fine, at least in small doses, so no problems there. Of course the new camera was in full effect, although I did manage to reformat the memory card at one point, which lost a bunch of pics (not too many, though). Don't worry, I got plenty of crap for that, so no need for further crappage, okay? I'm only a PhD student in engineering - I'm not a rocket scientist, you know.

This week, I had the added joy of beginning my radiation therapy. They're using 3-D conformal radiation, which according Stanford's website includes "advanced immobilization." I can only assume this refers to the foam leg molds that I put my legs in when I lie down. It's probably some sort of space-aged foam that costs a billion dollars a cubic foot (or maybe $20 down at House of Foam). Well, to be fair, there are also all sorts of lasers being used to align my body in the right direction and place via these lovely cross-shaped tattoos on my hips (I'd show pictures, but they're a little too racy and rebellious to be displayed publicly.) The 3-D conformal part refers to how they are able to use pre-obtained CT scans to map out the location of radiation that conforms to the original tumor.

They're also using intensity modulated radiation therapy, more information about which I will conveniently leave it to the reader to peruse here.

For the patient, radiation entails lying on a bed with a big round gray cheese wheel floating above you. The round wheel is attached to the big rotating arm with its base toward the top of your head. After they line you up with the lasers and such, the cheese wheel is aimed at your pelvis and rotates around you for a designated set of zaps (14 for me, 2 each at 7 angles) while you lie there for about 10-15 minutes. It's really quicker than you'd imagine, except of course that you have to go back and do it 28 times (now only 24! Woohoo!).

The treatment itself can have some side effects - exhaustion, diarrhea (since it's aimed at the pelvis), bladder irritation, etc. Some people also get sunburn on the skin near where they radiate. Hopefully I won't have too much of any of this, but you never can tell. One thing I've noticed about these oncologists is that they will never tell you what will happen. Everything is individualized, and so you could or might not experience any or all side effects. I suppose in the end, like many things, the only way to know is to go through it. Kinda sucks, eh?