(12/10/09)
There's no good way to express it. Life in the past few months has been rather shitty. The cancer beast is attacking on many fronts, and I am freaking exhausted. I really don't know how it's come to this, as mid-July found me with a clear PET-CT except for two shrinking lung nodules that had been treated with focused radiation. Then a little lung inflammation instigated a VATS procedure to biopsy my lung, thus pausing chemotherapy. After finally coming home from the hospital from the VATS, pain in my right side revealed a huge liver mass, and further scans showed new lung nodules (left lung) and a lesion on my left pelvic bone. Here's the current battle plan:
Front 1: Liver
Weapon: Radiation spheres and drainage
I still have a drain in my liver, but two weeks ago the IR docs shifted its placement and put in a slightly larger catheter to try and drain out more of the fluid. On Monday I found out the mass is finally getting smaller (it's shrunk about 15% in two weeks), but it's hard to say what will ultimately work the best to drain out the rest of the dead tissue in there. We have the option of putting in some anti-clotting agent and yet a bigger drain (the one that's in there is 5mm), but we're not sure if we're going to to that yet. The good news is that it looks like 95% of this tumor is dead from the radio-embolization. Hopefully the rest will go away with chemotherapy.
In the meantime, I continue to have fevers, although they're a little better than before. An alternating regimen of Tylenol and ibuprofen seems to keep them at bay, but I still get an occasional temperature spike and sweatiness that makes me feel craptastic and pretty much destroys my appetite.
Front 2: Pelvis
Weapon: Cyberknife
While I was in the hospital a while back I had some pain due to the pelvic lesion but it seemed to come and go. Now it's mostly back, but some days I can walk fairly normally (just not for long distances). Basically the pain is in my left groin and it hurts when I put weight on my left leg. The lesion is partially in the bone and partially in the tissue around it, but luckily, it's not too big to be a target for focused radiation. This is where Cyberknife comes in.
Cyberknife is basically a form of very focused radiation that can zap small tumors. I had focused IMRT radiation previously on my lung nodules, but this is slightly different. The Cyberknife uses images in real-time to guide its beam so that it can make adjustments during treatment and therefore be more accurate (supposedly within 0.6 mm). I had my last (5th) treatment on Wednesday, which was relatively painless. You basically just lie on a table for 40 minutes or so while a robotic arm rotates around you and zaps you with radiation. They have a little stereo with iPod dock so you can play your own music during the treatment. On Wed my iPod kept getting stuck on repeat, though, so I was listening to "Bleecker Street" over and over again for the first part of my session. Could have been worse, I suppose.
Front 3: Lung nodules
Weapon: Chemotherapy
It's a little odd to me that the one problem that's not causing me any physical pain right now may yet be the toughest to tackle. The three nodules in my lungs have not responded to the latest chemotherapy (taxotere and gemcitabine, for those of you keeping track), and so we're moving on to another type of drug, Nexovar (sorafenib), which is anti-angiogenic. Basically this means that instead of trying to kill the cancer cells directly, the drug tries to keep the tumor from growing new blood vessels so that it cannot get any larger. It's had some success in kidney and liver cancers, but using it against sarcoma is pretty experimental. The good news is that it's pill-based, so I can just add it to the list of drugs I'm taking every day rather than have constant trips to the hospital for infusions. The side effects aren't too bad, except that some people get "hand/foot syndrome", where they start to get really dry and flakey on their palms and bottoms of their feet. This can lead to blistering and (I assume) pain, but apparently being diligent with moisturizer can help keep this at bay. Hopefully I just won't have that problem.
The drug is systemic, so hopefully it'll have some effect on the bone and liver tumors as well.
Thursday, December 10, 2009
Tuesday, November 10, 2009
Out of the Hospital
[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.
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.
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.
Sunday, October 25, 2009
Radioactive Man's weekend, etc.
(10/25/09)
Workin' for the Weekend (10/10/09)
I left off after the radio-embolization on Thursday, when I was in extreme pain until the docs and nurses finally figured out a good narcotic regimen to make me nice and drugged (oxycontin + dilaudid = happy). Well there's not a whole lot to tell about the weekend after that. After the embolization, I started having the same fun "post embolization syndrome" symptoms as before: fevers, night sweats, pain, etc. There was a bit of a discussion among the doctors about what to give me to treat the fevers. the two main choices are tylenol and ibuprofen. The problem is that tylenol can have liver toxicity at high doses (not actually that much of a problem for me since my liver function tests had been fairly normal despite all the crap that's been going on in there), and ibuprofen can tend to thin the blood and potentially cause bleeding (not something you want so much after you've just had a procedure to stop internal bleeding). In any case, there was a lot of back and forth on this, and it seems like we've settled that Tylenol is the best bet for now, since my liver function has been fairly stable.
Also, I had to keep to the "3 feet for 3 days" rule, which meant because I had radioactive particles in me, I had to stay at least 3 feet away from small children and pregnant women for at least 3 days. Not a tough rule to follow, but I did keep hugs to a 2-minute maximum. . .
Chemo Bemo
I finally went home that Sunday, but the fun fevers were not over. More about that in a bit. The real question was what to do next. I had an appointment with Dr. G on Wednesday and she suggested starting another round of chemo as soon as possible. We were originally going to try taxotere and gemcitabine, but since one of them has some toxic interaction with radiation, she suggested taxol (similar to taxotere). The nice thing is that it's just a one day (3-hour) infusion and doesn't have a whole lot of crazy side effects. They just have to give it to you slowly at first to make sure you don't have any allergic reactions. The plan would be to get two doses (every three weeks) and then scan to see how things look. Taxol has a 25% chance of shrinking the tumors. Not great odds, but not terrible either. At some point my luck needs to flip, right?
So in any case, I went to get my first Taxol infusion two days later on Friday, about a week after having the right side of my liver essentially killed off for the second time. Sometimes I wonder how I'm still alive at all with all the "treatment" they're giving me, but I'm still kickin'. I had to go in on Saturday to get a dose of Neulasta, which is basically a longer-lasting version of neupogen, to help my white cell counts recover. Luckily, I didn't have too much reaction from the chemo, as far as I could tell. Compared to the pain and fevers and other uncomfortableness, the chemo was actually relatively easy to take. The only major symptoms were that the neulasta shot made my body really achy for a couple of days, and the Taxol is causing neuropathy in my fingers and feet. This basically means I have a constant tingling/numbness sensation in my fingers, toes, and the pads of my feet. It makes typing and walking kind of interesting but it's not unbearable. Hopefully it'll go away after a while.
Riding the fever roller coaster
Last time it took the fevers about 10 days to go away. This time, well, they still haven't gone away, and it's been about 16 days. Granted, I had a round of chemo shoved in there and this was a radio-embolization as opposed to a temporary gel-foam embolization, and so one might expect a longer recovery. Still, it is not fun to feel like crap for this long. Right now I'm taking Tylenol around the clock to try and keep the fevers down, but they still come regardless. Actually, the IR and oncology docs both are suspicious for infection at this point, so I had blood cultures drawn on Wednesday, and again on Friday. So far the results have been negative. I had a CT scan on Friday to see if maybe there was an abscess (a pocket of infectious fluid) growing in the liver, but they weren't able to tell much from the scan. I did get a dose of IV antibiotics (Zosyn, for those of you keeping track) and I've been on Augmentin since Monday. None of this seems to be doing too much good, although I have been "feeling" slightly better despite the fevers. That is, even though my temp is up, somehow I don't feel quite as crappy as before. Maybe it's just wishful thinking, but I'll take all the positive feelings I can get, even if they are a bit delusional :P.
Workin' for the Weekend (10/10/09)
I left off after the radio-embolization on Thursday, when I was in extreme pain until the docs and nurses finally figured out a good narcotic regimen to make me nice and drugged (oxycontin + dilaudid = happy). Well there's not a whole lot to tell about the weekend after that. After the embolization, I started having the same fun "post embolization syndrome" symptoms as before: fevers, night sweats, pain, etc. There was a bit of a discussion among the doctors about what to give me to treat the fevers. the two main choices are tylenol and ibuprofen. The problem is that tylenol can have liver toxicity at high doses (not actually that much of a problem for me since my liver function tests had been fairly normal despite all the crap that's been going on in there), and ibuprofen can tend to thin the blood and potentially cause bleeding (not something you want so much after you've just had a procedure to stop internal bleeding). In any case, there was a lot of back and forth on this, and it seems like we've settled that Tylenol is the best bet for now, since my liver function has been fairly stable.
Also, I had to keep to the "3 feet for 3 days" rule, which meant because I had radioactive particles in me, I had to stay at least 3 feet away from small children and pregnant women for at least 3 days. Not a tough rule to follow, but I did keep hugs to a 2-minute maximum. . .
Chemo Bemo
I finally went home that Sunday, but the fun fevers were not over. More about that in a bit. The real question was what to do next. I had an appointment with Dr. G on Wednesday and she suggested starting another round of chemo as soon as possible. We were originally going to try taxotere and gemcitabine, but since one of them has some toxic interaction with radiation, she suggested taxol (similar to taxotere). The nice thing is that it's just a one day (3-hour) infusion and doesn't have a whole lot of crazy side effects. They just have to give it to you slowly at first to make sure you don't have any allergic reactions. The plan would be to get two doses (every three weeks) and then scan to see how things look. Taxol has a 25% chance of shrinking the tumors. Not great odds, but not terrible either. At some point my luck needs to flip, right?
So in any case, I went to get my first Taxol infusion two days later on Friday, about a week after having the right side of my liver essentially killed off for the second time. Sometimes I wonder how I'm still alive at all with all the "treatment" they're giving me, but I'm still kickin'. I had to go in on Saturday to get a dose of Neulasta, which is basically a longer-lasting version of neupogen, to help my white cell counts recover. Luckily, I didn't have too much reaction from the chemo, as far as I could tell. Compared to the pain and fevers and other uncomfortableness, the chemo was actually relatively easy to take. The only major symptoms were that the neulasta shot made my body really achy for a couple of days, and the Taxol is causing neuropathy in my fingers and feet. This basically means I have a constant tingling/numbness sensation in my fingers, toes, and the pads of my feet. It makes typing and walking kind of interesting but it's not unbearable. Hopefully it'll go away after a while.
Riding the fever roller coaster
Last time it took the fevers about 10 days to go away. This time, well, they still haven't gone away, and it's been about 16 days. Granted, I had a round of chemo shoved in there and this was a radio-embolization as opposed to a temporary gel-foam embolization, and so one might expect a longer recovery. Still, it is not fun to feel like crap for this long. Right now I'm taking Tylenol around the clock to try and keep the fevers down, but they still come regardless. Actually, the IR and oncology docs both are suspicious for infection at this point, so I had blood cultures drawn on Wednesday, and again on Friday. So far the results have been negative. I had a CT scan on Friday to see if maybe there was an abscess (a pocket of infectious fluid) growing in the liver, but they weren't able to tell much from the scan. I did get a dose of IV antibiotics (Zosyn, for those of you keeping track) and I've been on Augmentin since Monday. None of this seems to be doing too much good, although I have been "feeling" slightly better despite the fevers. That is, even though my temp is up, somehow I don't feel quite as crappy as before. Maybe it's just wishful thinking, but I'll take all the positive feelings I can get, even if they are a bit delusional :P.
Thursday, October 08, 2009
Watch Out, Radioactive Man!!
(10/12/09)
My work week:
Monday (10/05/09)
CT angiogram didn't show anything conclusive in terms of finding the source of the bleed. Nuts. But I was definitely bleeding because my hemoglobin counts kept slowly dropping. I was also having episodes where I would stand for a while and start to feel nauseated and drained, but once I sat down I'd be fine. I imagine this was partly because of dehydration (I wasn't allowed to eat or drink before the angiogram) and partly because of having low blood counts. Since then I've been on constant hydration, which definitely helps. After the angiogram, they still wouldn't let me eat or drink, since they wanted to see the results and potentially do another procedure. It got later and later, and I was pretty sure they weren't going to do anything that night, but still I was ordered NPO (non per ostium = nothing by mouth).
Tuesday (10/06/09)
I didn't have to do much, though I did get a blood transfusion to boost up my counts. In addition, they scheduled me for a radio-embolization procedure, which is similar to the previous liver embolization procedure I had, but it uses radioactive particles to try to embolize and kill the tumor. Previously they used gel-foam, a clotting agent to cut off the blood supply to the right hepatic artery, which feeds most of the right lobe of the liver. The gel-foam dissolves after 3-4 weeks, however, so it's possible that after it dissolved it just started bleeding again. Hence, my return to the hospital.
The radio-embolization procedure is done in two parts on two days. First, they go in with a catheter through the femoral artery in the groin and clot off any arteries that go from the right hepatic artery in the liver to other organs, like the stomach or intestine, so that no particles are delivered there (they can cause nasty ulcers and other badness). Then they inject a radioactive tracer and send you to nuclear imaging to make sure they contained the right areas. The next day, they go in and actually deliver the radioactive particles.
Once we figured out that the first part wasn't going to happen today, I was finally allowed to eat. Hallelujah.
Wednesday (10/07/09)
We basically waited all morning for the first part of the procedure to start. Somehow I had forgotten to ask the most basic question of the IR docs: how long would every thing take? So I asked the oncology attending: he said the procedure itself would be about an hour, but prep time and imaging might take longer. The nurse said probably 3 hours for the first interventional part and about 2 hours for the imaging, maybe 6 hours total. They took me out around 11:30am and straight into the IR suite. I'm not sure how much prep there was but I was definitely in there until at least 5pm. I was awake the whole time, though under some sleepiness medication. I could see the screen a little bit as they injected contrast into my liver and lit up all the arteries there. They took a few images first and then started blocking off arteries that feed from the liver to other organs. I'm not sure how many stray arteries they blocked off, but I guess it was quite a few. At the end, they injected the radioactive tracer and sent me to nuclear medicine for some scans. The scans took about an hour, and I didn't get back to my hospital room until 6:30 or 7pm. Turns out the nurse was much closer than the attending, but maybe he was playing the "Price is Right" move of betting $1 so as not to go over.
So there was a bit of confusion when I got back. I called my oncologist to let her know I was back in the room and to see if she was still able to come by as she said she would. She called me back and said she had spoken with my previous oncologist (Dr. J, the one who went on sabbatical) and she (Dr. J) suggested doing a right lobe liver resection to just get rid of the mass all together, so that it wouldn't keep bleeding and cause problems while I was getting chemotherapy later. Well then did we still need to do the liver embolization? Or at least, did we need to do it with radioactive particles (the IR docs said that it wouldn't be safe for the surgeon to operate for a least two weeks after the embolization)? Unfortunately we wouldn't get a chance to talk to the surgeon (Let's call him Surg N), since he'd be in surgery (imagine that) all the next day. So, what to do, what to do. . . We talked to the oncology resident who had been following me (Resident V), and he said this was the first he had heard about doing the surgery, so he would go and try and coordinate with everyone to figure out what was going on.
Thursday (10/08/09)
So in the morning Resident V came by and said the embolization procedure was scheduled for 1:30pm. He said he talked to Dr. G (my onc doc), who had spoken with the IR docs, and everyone seemed to agree it made the most sense to continue with the embolization. The other sticking factor was that the radioactive particles that they were going to use would expire the following day, meaning they had to be used that day. Also, apparently it takes a week to get the particles, so if we were to wait a day, talk to Surg N, only to have him say he couldn't do anything about the bleeding, we'd have to wait another week to get the procedure done.
Sometime in the morning a medical student showed up to chat with me. At first I was a little annoyed, because one of the teaching coordinators had come by the previous day and asked if she could have one of the med students come in to practice taking patient histories. I normally would say yes, but this time I was just not in the mood, so I said if they couldn't find someone else then I would do it. Anyway, my initial response of annoyance dissolved immediately when I realized she was a) a 4th year (why would they be sending 4th years to take patient histories?) and b) was there to get my history for Surg N. She said he had specifically asked her to come see me for this purpose. My mom and I told her a few of our concerns, that the embolization might delay the time to do surgery, which in turn would delay the time within which I could get chemo, etc. She reassured us that Surg N had a way of seeming to know what was going on everywhere in the hospital. Specifically, since he obviously knew about my case, he probably knew what steps were being taken, and since he hadn't taken any steps to change the course of action, he probably agreed with the current course. Well, that was at least somewhat reassuring. Later she came back after speaking with Surg N in the OR (operating room) to let us know that yes, he definitely agreed to proceed with the embolization. Furthermore, he had said that he wouldn't do surgery to stop the bleeding anyway, so this seemed like the right course.
Meanwhile, the IR docs were working on an emergency procedure that ran late, so I was waiting around as usual and didn't actually leave the room until about 3pm or so (I had been NPO again since midnight). Apparently right after I left, Surg N showed up to talk with me. Doh. Anyway, they carted me down to the same suite and did the same prep: I shifted from my bed to the operating table, they covered me with a sterile sheet, and gave me some happy cocktail to make me slightly sleepy. The IR doc came in and they did things in much the same way, taking some images to start with. Then they delivered the radioactive particles. The doctor showed me the device they used. The particles are kept in this rectangular plexiglass container with two small tubes coming out. One tube gets attached to the catheter that was in my femoral artery, and the other is attached to a syringe with saline in it. Inside the container the tubes lead down into a small vial that contains the particles, so somehow as saline is forced from one side it pushes the particles out the other side and into my liver.
Up until this point, the procedure had been pretty painless. After the radioactive particles were injected, though, they still had to stop the bleeding, and that's when they delivered the embolization particles. Now, that was painful. All of a sudden the blood supply to the whole right lobe of my liver was cut off - turns out the body doesn't like that so much. So in the last couple minutes of the procedure I was literally writhing in pain. They gave me some pain meds and then sent me to the recovery room to get my pain under control. The kicker there is that the doctor didn't put in enough orders for meds, so the recovery room nurse just had to keep calling and paging the doctor to write for more medication to get the pain under control. Finally, she got enough to get me back to my room (which was private, now that I was radioactive). They ended up having to switch up some of the orders in my room, too, because the original orders were definitely not enough. That first night was pretty rough as far as pain goes, but finally I got a push of IV dilaudid, and things felt all right in the world.
----- OK peeps, I've been trying to write this on and off over the past few days, and I need a break. I feel I need to post this, so I'll have to finish the hospital stay update at a later time. Right now I'm at home (got here Sunday) and am doing okay except for continuing to have fevers and annoying sweats. I have an appointment with Dr. G on Wednesday to figure out next steps. Cancer sucks.
My work week:
Monday (10/05/09)
CT angiogram didn't show anything conclusive in terms of finding the source of the bleed. Nuts. But I was definitely bleeding because my hemoglobin counts kept slowly dropping. I was also having episodes where I would stand for a while and start to feel nauseated and drained, but once I sat down I'd be fine. I imagine this was partly because of dehydration (I wasn't allowed to eat or drink before the angiogram) and partly because of having low blood counts. Since then I've been on constant hydration, which definitely helps. After the angiogram, they still wouldn't let me eat or drink, since they wanted to see the results and potentially do another procedure. It got later and later, and I was pretty sure they weren't going to do anything that night, but still I was ordered NPO (non per ostium = nothing by mouth).
Tuesday (10/06/09)
I didn't have to do much, though I did get a blood transfusion to boost up my counts. In addition, they scheduled me for a radio-embolization procedure, which is similar to the previous liver embolization procedure I had, but it uses radioactive particles to try to embolize and kill the tumor. Previously they used gel-foam, a clotting agent to cut off the blood supply to the right hepatic artery, which feeds most of the right lobe of the liver. The gel-foam dissolves after 3-4 weeks, however, so it's possible that after it dissolved it just started bleeding again. Hence, my return to the hospital.
The radio-embolization procedure is done in two parts on two days. First, they go in with a catheter through the femoral artery in the groin and clot off any arteries that go from the right hepatic artery in the liver to other organs, like the stomach or intestine, so that no particles are delivered there (they can cause nasty ulcers and other badness). Then they inject a radioactive tracer and send you to nuclear imaging to make sure they contained the right areas. The next day, they go in and actually deliver the radioactive particles.
Once we figured out that the first part wasn't going to happen today, I was finally allowed to eat. Hallelujah.
Wednesday (10/07/09)
We basically waited all morning for the first part of the procedure to start. Somehow I had forgotten to ask the most basic question of the IR docs: how long would every thing take? So I asked the oncology attending: he said the procedure itself would be about an hour, but prep time and imaging might take longer. The nurse said probably 3 hours for the first interventional part and about 2 hours for the imaging, maybe 6 hours total. They took me out around 11:30am and straight into the IR suite. I'm not sure how much prep there was but I was definitely in there until at least 5pm. I was awake the whole time, though under some sleepiness medication. I could see the screen a little bit as they injected contrast into my liver and lit up all the arteries there. They took a few images first and then started blocking off arteries that feed from the liver to other organs. I'm not sure how many stray arteries they blocked off, but I guess it was quite a few. At the end, they injected the radioactive tracer and sent me to nuclear medicine for some scans. The scans took about an hour, and I didn't get back to my hospital room until 6:30 or 7pm. Turns out the nurse was much closer than the attending, but maybe he was playing the "Price is Right" move of betting $1 so as not to go over.
So there was a bit of confusion when I got back. I called my oncologist to let her know I was back in the room and to see if she was still able to come by as she said she would. She called me back and said she had spoken with my previous oncologist (Dr. J, the one who went on sabbatical) and she (Dr. J) suggested doing a right lobe liver resection to just get rid of the mass all together, so that it wouldn't keep bleeding and cause problems while I was getting chemotherapy later. Well then did we still need to do the liver embolization? Or at least, did we need to do it with radioactive particles (the IR docs said that it wouldn't be safe for the surgeon to operate for a least two weeks after the embolization)? Unfortunately we wouldn't get a chance to talk to the surgeon (Let's call him Surg N), since he'd be in surgery (imagine that) all the next day. So, what to do, what to do. . . We talked to the oncology resident who had been following me (Resident V), and he said this was the first he had heard about doing the surgery, so he would go and try and coordinate with everyone to figure out what was going on.
Thursday (10/08/09)
So in the morning Resident V came by and said the embolization procedure was scheduled for 1:30pm. He said he talked to Dr. G (my onc doc), who had spoken with the IR docs, and everyone seemed to agree it made the most sense to continue with the embolization. The other sticking factor was that the radioactive particles that they were going to use would expire the following day, meaning they had to be used that day. Also, apparently it takes a week to get the particles, so if we were to wait a day, talk to Surg N, only to have him say he couldn't do anything about the bleeding, we'd have to wait another week to get the procedure done.
Sometime in the morning a medical student showed up to chat with me. At first I was a little annoyed, because one of the teaching coordinators had come by the previous day and asked if she could have one of the med students come in to practice taking patient histories. I normally would say yes, but this time I was just not in the mood, so I said if they couldn't find someone else then I would do it. Anyway, my initial response of annoyance dissolved immediately when I realized she was a) a 4th year (why would they be sending 4th years to take patient histories?) and b) was there to get my history for Surg N. She said he had specifically asked her to come see me for this purpose. My mom and I told her a few of our concerns, that the embolization might delay the time to do surgery, which in turn would delay the time within which I could get chemo, etc. She reassured us that Surg N had a way of seeming to know what was going on everywhere in the hospital. Specifically, since he obviously knew about my case, he probably knew what steps were being taken, and since he hadn't taken any steps to change the course of action, he probably agreed with the current course. Well, that was at least somewhat reassuring. Later she came back after speaking with Surg N in the OR (operating room) to let us know that yes, he definitely agreed to proceed with the embolization. Furthermore, he had said that he wouldn't do surgery to stop the bleeding anyway, so this seemed like the right course.
Meanwhile, the IR docs were working on an emergency procedure that ran late, so I was waiting around as usual and didn't actually leave the room until about 3pm or so (I had been NPO again since midnight). Apparently right after I left, Surg N showed up to talk with me. Doh. Anyway, they carted me down to the same suite and did the same prep: I shifted from my bed to the operating table, they covered me with a sterile sheet, and gave me some happy cocktail to make me slightly sleepy. The IR doc came in and they did things in much the same way, taking some images to start with. Then they delivered the radioactive particles. The doctor showed me the device they used. The particles are kept in this rectangular plexiglass container with two small tubes coming out. One tube gets attached to the catheter that was in my femoral artery, and the other is attached to a syringe with saline in it. Inside the container the tubes lead down into a small vial that contains the particles, so somehow as saline is forced from one side it pushes the particles out the other side and into my liver.
Up until this point, the procedure had been pretty painless. After the radioactive particles were injected, though, they still had to stop the bleeding, and that's when they delivered the embolization particles. Now, that was painful. All of a sudden the blood supply to the whole right lobe of my liver was cut off - turns out the body doesn't like that so much. So in the last couple minutes of the procedure I was literally writhing in pain. They gave me some pain meds and then sent me to the recovery room to get my pain under control. The kicker there is that the doctor didn't put in enough orders for meds, so the recovery room nurse just had to keep calling and paging the doctor to write for more medication to get the pain under control. Finally, she got enough to get me back to my room (which was private, now that I was radioactive). They ended up having to switch up some of the orders in my room, too, because the original orders were definitely not enough. That first night was pretty rough as far as pain goes, but finally I got a push of IV dilaudid, and things felt all right in the world.
----- OK peeps, I've been trying to write this on and off over the past few days, and I need a break. I feel I need to post this, so I'll have to finish the hospital stay update at a later time. Right now I'm at home (got here Sunday) and am doing okay except for continuing to have fevers and annoying sweats. I have an appointment with Dr. G on Wednesday to figure out next steps. Cancer sucks.
Monday, October 05, 2009
The good and the bad
(10/05/09)
Just a quick update tonight. I did finally get the PET-CT today (the floor attending apparently pulled some strings to make that happen - they were going to make me wait til Wed), and the unofficial read is that the liver mass is mostly blood! Yay! Part of the bad news is that the edge of the liver did look brighter on the scan, so it could be tumor. It's also possible that it's just inflammation, but I'm not holding my breath on that. The other part of the bad news is that the official read on the CT scan from Saturday says that there may be a lesion on a bone in my pelvis, something that's new since the last scan. Apparently it looks like it's breaking down the bone there. Nobody's really said much about that, but hopefully the official PET-CT report will have more information.
As for next steps, I got a CT angiogram done earlier this evening to try and track down the source of the bleeding in my liver. Apparently my blood counts have been slowly dropping, and so they think there's a slow bleed somewhere there. Unfortunately my doctor friend says angiograms have a tough time localizing the source if the bleed is slow, so it's possible they still won't know whence* it's bleeding. Right now I'm just really thirsty because they haven't let me eat or drink since 4:30pm. It's now almost midnight. They want to see the results of the scan before letting me eat or drink, in the event that something (probably another embolization) needs to be done tonight. Urgh. At least I got them to give me some saline so I'm not completely dehydrated. I am tired though, so dis post ends here.**
* "from where" - couldn't resist the chance to use an archaic subordinating conjunction. Yes, I'm a little bit of a grammar freak.
** well, except for these footnotes :P
Just a quick update tonight. I did finally get the PET-CT today (the floor attending apparently pulled some strings to make that happen - they were going to make me wait til Wed), and the unofficial read is that the liver mass is mostly blood! Yay! Part of the bad news is that the edge of the liver did look brighter on the scan, so it could be tumor. It's also possible that it's just inflammation, but I'm not holding my breath on that. The other part of the bad news is that the official read on the CT scan from Saturday says that there may be a lesion on a bone in my pelvis, something that's new since the last scan. Apparently it looks like it's breaking down the bone there. Nobody's really said much about that, but hopefully the official PET-CT report will have more information.
As for next steps, I got a CT angiogram done earlier this evening to try and track down the source of the bleeding in my liver. Apparently my blood counts have been slowly dropping, and so they think there's a slow bleed somewhere there. Unfortunately my doctor friend says angiograms have a tough time localizing the source if the bleed is slow, so it's possible they still won't know whence* it's bleeding. Right now I'm just really thirsty because they haven't let me eat or drink since 4:30pm. It's now almost midnight. They want to see the results of the scan before letting me eat or drink, in the event that something (probably another embolization) needs to be done tonight. Urgh. At least I got them to give me some saline so I'm not completely dehydrated. I am tired though, so dis post ends here.**
* "from where" - couldn't resist the chance to use an archaic subordinating conjunction. Yes, I'm a little bit of a grammar freak.
** well, except for these footnotes :P
Sunday, October 04, 2009
Dear cancer, I hate you
(10/04/09)
I'm in the freakin' hospital again. Agh.* Just when I was starting to feel better this week - finally able to do more than lie on the couch in a vegetating stupor (I even went out for dinner on Friday with some friends: thanks guys!) - I started having pain in my right side again. It started Wed night when I was watching "Monsters vs. Aliens" (a much funnier movie than I expected) and my right side felt sore from laughing. It was just positionally sore for a couple days, then it started hurting more and more consistently. Finally I was having trouble sleeping from the pain and came into the ER on Saturday morning. The symptoms were similar to the last time I had a liver bleed, so they wanted to do a contrast CT to check for bleeding. The slightly good news is there was no sign of bleeding. The bad news is that the mass has almost doubled in size since Sept. 1. WTF? It looks like a freaking grapefruit on the scan.
For now they've kept me here for monitoring to make sure the mass doesn't rupture and start bleeding. Right now we just don't have enough information about what the mass is. The CT can't show if it's blood or tumor. A PET-CT could show how much of it is tumor (if it's the whole thing it should light up like a beacon) but of course you can't get a PET-CT on the weekend because apparently there's just not much call for emergency PET-CTs. This is just one of those rare cases where it'd really be useful to have one in a hurry. One of these days I should be able to go to Vegas and cash in this bad luck for something good.
In any case it hasn't been too bad waiting around. They've been controlling my pain pretty well and I've had friends in town to visit (maybe not the party they were looking for, but they've been good sports to hang out here).
Supposedly the oncology team got in touch with someone in nuclear medicine this weekend, so they at least know of the problem. Of course the PET-CT hasn't actually been scheduled yet, but the plan is to do it tomorrow morning.** Hopefully then we'll have the information needed to act next - either drain the blood or do something about the tumor (or both). The astute reader might ask, "Why not just go in and drain the thing now? You know it was bleeding before, so some of it must be blood." Well, the problem is if they stick a needle into the tumor, then when they pull the needle out, the track it was in can actually spread tumor cells around, which is bad news. So, again, it's hurry up and wait. . .
* "Agh" obviously doesn't cover what I'm feeling right now, but a post filled with rampant cursing probably isn't very pleasant to read either. But really, I'm f&#king sick of this sh*t. It really seems like every time I'm starting to have good news, more sh*t piles on. Don't get me wrong, I'll fight it tooth and nail, because cancer is a cowardly bastard and doesn't deserve any kind of respect. But damn, this f&#king sucks.
** Fun little fact: apparently it's really hard to get a PET-CT done as an in-patient procedure. My doctor friend Sarah says it's because of the way the reimbursement gets handled. Somehow an in-patient scan is not reimbursed as much as an out-patient scan. That's right, somehow the same exact procedure costs two different amounts. Another quirky obnoxious insurance issue that makes no sense.
I'm in the freakin' hospital again. Agh.* Just when I was starting to feel better this week - finally able to do more than lie on the couch in a vegetating stupor (I even went out for dinner on Friday with some friends: thanks guys!) - I started having pain in my right side again. It started Wed night when I was watching "Monsters vs. Aliens" (a much funnier movie than I expected) and my right side felt sore from laughing. It was just positionally sore for a couple days, then it started hurting more and more consistently. Finally I was having trouble sleeping from the pain and came into the ER on Saturday morning. The symptoms were similar to the last time I had a liver bleed, so they wanted to do a contrast CT to check for bleeding. The slightly good news is there was no sign of bleeding. The bad news is that the mass has almost doubled in size since Sept. 1. WTF? It looks like a freaking grapefruit on the scan.
For now they've kept me here for monitoring to make sure the mass doesn't rupture and start bleeding. Right now we just don't have enough information about what the mass is. The CT can't show if it's blood or tumor. A PET-CT could show how much of it is tumor (if it's the whole thing it should light up like a beacon) but of course you can't get a PET-CT on the weekend because apparently there's just not much call for emergency PET-CTs. This is just one of those rare cases where it'd really be useful to have one in a hurry. One of these days I should be able to go to Vegas and cash in this bad luck for something good.
In any case it hasn't been too bad waiting around. They've been controlling my pain pretty well and I've had friends in town to visit (maybe not the party they were looking for, but they've been good sports to hang out here).
Supposedly the oncology team got in touch with someone in nuclear medicine this weekend, so they at least know of the problem. Of course the PET-CT hasn't actually been scheduled yet, but the plan is to do it tomorrow morning.** Hopefully then we'll have the information needed to act next - either drain the blood or do something about the tumor (or both). The astute reader might ask, "Why not just go in and drain the thing now? You know it was bleeding before, so some of it must be blood." Well, the problem is if they stick a needle into the tumor, then when they pull the needle out, the track it was in can actually spread tumor cells around, which is bad news. So, again, it's hurry up and wait. . .
* "Agh" obviously doesn't cover what I'm feeling right now, but a post filled with rampant cursing probably isn't very pleasant to read either. But really, I'm f&#king sick of this sh*t. It really seems like every time I'm starting to have good news, more sh*t piles on. Don't get me wrong, I'll fight it tooth and nail, because cancer is a cowardly bastard and doesn't deserve any kind of respect. But damn, this f&#king sucks.
** Fun little fact: apparently it's really hard to get a PET-CT done as an in-patient procedure. My doctor friend Sarah says it's because of the way the reimbursement gets handled. Somehow an in-patient scan is not reimbursed as much as an out-patient scan. That's right, somehow the same exact procedure costs two different amounts. Another quirky obnoxious insurance issue that makes no sense.
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