[Aside: This blog is way out of date - I'm out of the hospital right now and continuing with treatment, though the drain drama has not quite completed. . . This post was written last week.]
So the docs came in finally on Friday (11/6/09) and said, "well, we really haven't done anything for you in the past four days, so we're thinking we should send you home with the drain and give it some more time." Well that's comforting. I suppose they were right, but it was a little surprising to get such an anticlimactic end to a two-week hospital stay. Essentially, as I said in the previous post, I had been lying around and waiting for the liver drain output to come down. In the meantime, they would replace my potassium or magnesium as I needed it, but for the most part I guess I didn't really need to be in the hospital anymore.
So, I've been hanging out at home again (my sister's) and trying to deal with these continuing fevers. They do seem to be getting better, but at this point it's been 4-5 weeks. I'm pretty ready for them to go away. . .
In the meantime, I talked to my oncologist yesterday (11/9/09), and since we're pretty sure the fevers are not being caused by infection, we're going to continue with chemotherapy, with the original regimen of taxotere and gemcitabine (we couldn't use this at first because of possible bad interactions with radiation). Apparently there are actually numbers for these drugs - 40% chance of response in soft-tissue sarcomas. Still not great odds, but better than nothing. Rhabdo is notorious for not responding to chemo, especially the second time around. We do have a number of possible choices, though, so hopefully one of them will work.
Tuesday, November 10, 2009
Wednesday, November 04, 2009
OMG So much hospital time. . .
(Written 11/4/09)
Well, I guess I just can't stay out of this place. After two weeks of fevers that weren't going away and weren't getting any better, I'm back in the hospital again. I waited out the weekend and called the clinic on Monday because I spiked up to 102.5 F again on Sunday night despite my mom's best efforts to cool my body with cold packs and wet washcloths. The interventional radiology (IR) folks also called me on Monday and said the CT scan showed a pocket of fluid in the liver that could be an abscess, so they wanted me to come in and have a tube put in the liver to drain out the fluid. Meanwhile, the oncology team wanted me to come in and be admitted to get IV antibiotics, and so began my latest stay at Hotel Stanford.
Shaky Shaky
So Monday night they started dosing me with Zosyn and Vancomycin, and on Tuesday the IR folks went ahead with the drain placement. Again I was awake for the procedure with some happy juice to make me woozy (Fentanyl and Versed). I think they gave me a little more than usual, though, because I don't remember much of what happened. What I do remember is that part way through I started shaking like crazy, and apparently my heart rate shot up to 180 bpm (normal is 60-80ish). Apparently this is pretty common when they put in drainage tubes, because some of whatever's in the pocket you're trying to drain can get out into the bloodstream and cause the body to react badly. I guess the IR doc was concerned about this episode leading to sepsis - I still don't really know what this is, but it seems super bad - so I got to spend the night in the ICU again. This time around wasn't so bad, since my pain wasn't as bad as before, and I actually ended up chatting with the night nurse a bit (If you'll recall, the ICU here has two connected rooms with two beds each, and one nurse per two patients, so there's a lot of attention. But there's a bit of downtime as well, since in this case the other patient couldn't really talk.).
Waity Waity
After the one night they moved me back to E Ground, where I continue to wait for things to get better. The drain has been giving more output than the docs originally expected, so they keep waiting for the output to come down. The first couple of days it was outputting almost a liter a day, now it's down to a couple hundred mL, but they'd like to see it down to <20 mL or so. It's mostly frustrating because no one can seem to make a decision about what to do. The IR folks say they could possibly do another procedure, but it's unclear that that would help anything. The surgeons don't want to operate, and the oncologists aren't sure what to do since there's no infection.
Well, I guess I just can't stay out of this place. After two weeks of fevers that weren't going away and weren't getting any better, I'm back in the hospital again. I waited out the weekend and called the clinic on Monday because I spiked up to 102.5 F again on Sunday night despite my mom's best efforts to cool my body with cold packs and wet washcloths. The interventional radiology (IR) folks also called me on Monday and said the CT scan showed a pocket of fluid in the liver that could be an abscess, so they wanted me to come in and have a tube put in the liver to drain out the fluid. Meanwhile, the oncology team wanted me to come in and be admitted to get IV antibiotics, and so began my latest stay at Hotel Stanford.
Shaky Shaky
So Monday night they started dosing me with Zosyn and Vancomycin, and on Tuesday the IR folks went ahead with the drain placement. Again I was awake for the procedure with some happy juice to make me woozy (Fentanyl and Versed). I think they gave me a little more than usual, though, because I don't remember much of what happened. What I do remember is that part way through I started shaking like crazy, and apparently my heart rate shot up to 180 bpm (normal is 60-80ish). Apparently this is pretty common when they put in drainage tubes, because some of whatever's in the pocket you're trying to drain can get out into the bloodstream and cause the body to react badly. I guess the IR doc was concerned about this episode leading to sepsis - I still don't really know what this is, but it seems super bad - so I got to spend the night in the ICU again. This time around wasn't so bad, since my pain wasn't as bad as before, and I actually ended up chatting with the night nurse a bit (If you'll recall, the ICU here has two connected rooms with two beds each, and one nurse per two patients, so there's a lot of attention. But there's a bit of downtime as well, since in this case the other patient couldn't really talk.).
Waity Waity
After the one night they moved me back to E Ground, where I continue to wait for things to get better. The drain has been giving more output than the docs originally expected, so they keep waiting for the output to come down. The first couple of days it was outputting almost a liter a day, now it's down to a couple hundred mL, but they'd like to see it down to <20 mL or so. It's mostly frustrating because no one can seem to make a decision about what to do. The IR folks say they could possibly do another procedure, but it's unclear that that would help anything. The surgeons don't want to operate, and the oncologists aren't sure what to do since there's no infection.
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