Finally, some good news!
(12/23/09)
I had a follow-up appointment with my oncologist today, and the chest x-ray showed that my lung nodules have gotten smaller! Woohoo! Finally it seems something is working! We'll get a more thorough CT scan in another four weeks, but for now I'm feeling pretty good about things. My oncologist called me pretty much right after I got home to give me the good news. It's a great early birthday present.
As for the other two fronts, I've been able to walk more than before without pain, so I'm hoping that means the pelvic tumor is responding to the radiation. It still gets achy and sore after a few minutes of walking, but it's not nearly as painful as it was before.
The liver mass is a bit more of a mystery right now. The catheter is still in place, but it's not draining very much fluid anymore. My oncologist doesn't want to have the interventional radiologists mess with the catheter (i.e. try and reposition it) because the systemic drug I'm taking (Nexavar or sorafenib) can cause bleeding. If we did decide to reposition the catheter I'd have to stop the sorafenib for six days, and I don't want to jinx the streak I'm on right now. So liver-wise, we're holding steady for now. As long as something is draining out I guess it's still a good sign. Though it would be nice to get rid of this tube and bag that I have to carry around everywhere.
As for the sorafenib itself, the side effects haven't been too bad, although it's been a bit tough to balance the constipating effects of the pain meds with the whatever-the-opposite-of-constipating-is effects of the sorafenib. A small price to pay for beating down the cancer (woohoo!), I suppose.
Okay, that's it for now. I hope everyone out there has a great Christmas/holiday, and here's to a happy, healthy new year!
Wednesday, December 23, 2009
Thursday, December 10, 2009
War with many fronts
(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.
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.
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.
Thursday, September 24, 2009
Nine down, one more to go
(9/24/09)
What a way to spend a summer. Well, not the whole summer. I guess things were okay up until the beginning of August. The Navelbine/Cytoxan treatment regimen I was on wasn't too bad to handle. I was still able to get out and climb a bit, go to school, do some normal stuff. Then August hit with its lung issues, surgery plus complications, then the completely unexpected liver issue. Now it's almost the end of September and I can barely walk around the block without getting winded.
Emotionally I think this has been the hardest part of this whole ordeal. Somehow, in the beginning, partial denial plus hopefulness buoyed my spirits. I really thought that year or so of chemo was going to be the trick. Even with the lung recurrences, it looked like the radiation therapy was doing its job. Now, trying to recover from lung inflammation and facing the possibility of metastasis in yet another organ. . .
I think what helped before was that despite what was coming at me, I could still occasionally pull of a semblance of a life. I could get myself up a couple of climbs at the wall, I could get into school and make a little progress on my thesis. Heck, I defended my thesis a week after my first VATS (lung surgery)! I even took a few trips with friends and got to go to India for the first time.
Right now, though, it's all I can do to haul myself out of bed in the morning. Sitting on the couch is of course super boring, but it's about all I can handle. Even conversations get me a little winded. I know it will get better. Day by day my appetite gets better. Hopefully I"ll start to gain back those ten pounds I lost in the past month or two. My mom's been feeding me quite well, and I've got good friends coming by to visit (though there could always be more - hint, hint).
Anyhow, for now, I'm looking forward to getting tomorrow over with, and getting a week's break. I've lucked out in some sense, in that the worst side effect of this Irinotecan drug - diarrhea - hasn't really affected me at all. It's just left me incredibly tired. Whew.
What a way to spend a summer. Well, not the whole summer. I guess things were okay up until the beginning of August. The Navelbine/Cytoxan treatment regimen I was on wasn't too bad to handle. I was still able to get out and climb a bit, go to school, do some normal stuff. Then August hit with its lung issues, surgery plus complications, then the completely unexpected liver issue. Now it's almost the end of September and I can barely walk around the block without getting winded.
Emotionally I think this has been the hardest part of this whole ordeal. Somehow, in the beginning, partial denial plus hopefulness buoyed my spirits. I really thought that year or so of chemo was going to be the trick. Even with the lung recurrences, it looked like the radiation therapy was doing its job. Now, trying to recover from lung inflammation and facing the possibility of metastasis in yet another organ. . .
I think what helped before was that despite what was coming at me, I could still occasionally pull of a semblance of a life. I could get myself up a couple of climbs at the wall, I could get into school and make a little progress on my thesis. Heck, I defended my thesis a week after my first VATS (lung surgery)! I even took a few trips with friends and got to go to India for the first time.
Right now, though, it's all I can do to haul myself out of bed in the morning. Sitting on the couch is of course super boring, but it's about all I can handle. Even conversations get me a little winded. I know it will get better. Day by day my appetite gets better. Hopefully I"ll start to gain back those ten pounds I lost in the past month or two. My mom's been feeding me quite well, and I've got good friends coming by to visit (though there could always be more - hint, hint).
Anyhow, for now, I'm looking forward to getting tomorrow over with, and getting a week's break. I've lucked out in some sense, in that the worst side effect of this Irinotecan drug - diarrhea - hasn't really affected me at all. It's just left me incredibly tired. Whew.
Thursday, September 17, 2009
Day 4 of Chemo Goodness
(9/17/09)
Well, all the little fresh kiddies are running around campus now, with their laminated name tags hanging from red lanyards. Class of 2013 has arrived at Stanford. Oh man.
Meanwhile, back in my fun world, I pushed through Day 4 of the Irinotecan Temodar regimen that we've been meaning to start for, oh about a month and a half now. Aside from feeling crappy, nauseated, and generally tired, it's not been any worse than any of the previous regimens so far, so I guess that's a good thing. The difference is that I'm coming into it while still recovering from two semi-invasive procedures that have been, well, quite traumatizing.
Strangely enough, the most recent liver embolization, which really only left a small incision in my groin (ah the wonders of minimally invasive therapy), has been the hardest to get over in terms of pain and other side effects like fevers and night sweats. I've just been exhausted and needing to sleep for hours and hours a day. The VATS procedure on my left lung has healed up quite well, and aside from a slightly misshapen left pectoral muscle, it hasn't been too painful at all. The main trick is to keep from sneezing (ouch).
Zap it?
So here's the state of things. As far as we know, the biopsies from my lungs came back negative for malignancy. In fact, all they could see was "inflammation", caused by what, we don't know, but it should go away over time. The real question now, is the pesky liver. The embolization stopped the extraneous bleeding, but scans can't distinguish between blood and tumor or whatever else might be there. So, it's a bit tough to tell how big the tumor is or if there is one at all (could have been some spontaneous bleed). Right now we're going to hit it and all of extra little baddie cells that might be floating around with some chemo for a while. We'll scan again in a couple months and see how things look.
For now
I pretty much feel like crap. I've spent two to three weeks being in pain, exhausted, and having fevers and night sweats. Most of the pain has died down, I"m still exhausted, now nauseated, and generally trying to stave off the diarrhea that's supposed to be the main side effect of irinotecan. In a word, it sucks.
I've been mostly recovering at my sister's new place, which is pretty close to campus, so I guess that's a bit of a convenience. It's hard to focus on doing much else than just sitting around and vegetating though. Not exactly what I thought the end of the PhD was going to be. Anyhow, if anyone is up for visits or hug deliveries, I'm all up for it, if you can put up with my incessant hiccuping. . .
Well, all the little fresh kiddies are running around campus now, with their laminated name tags hanging from red lanyards. Class of 2013 has arrived at Stanford. Oh man.
Meanwhile, back in my fun world, I pushed through Day 4 of the Irinotecan Temodar regimen that we've been meaning to start for, oh about a month and a half now. Aside from feeling crappy, nauseated, and generally tired, it's not been any worse than any of the previous regimens so far, so I guess that's a good thing. The difference is that I'm coming into it while still recovering from two semi-invasive procedures that have been, well, quite traumatizing.
Strangely enough, the most recent liver embolization, which really only left a small incision in my groin (ah the wonders of minimally invasive therapy), has been the hardest to get over in terms of pain and other side effects like fevers and night sweats. I've just been exhausted and needing to sleep for hours and hours a day. The VATS procedure on my left lung has healed up quite well, and aside from a slightly misshapen left pectoral muscle, it hasn't been too painful at all. The main trick is to keep from sneezing (ouch).
Zap it?
So here's the state of things. As far as we know, the biopsies from my lungs came back negative for malignancy. In fact, all they could see was "inflammation", caused by what, we don't know, but it should go away over time. The real question now, is the pesky liver. The embolization stopped the extraneous bleeding, but scans can't distinguish between blood and tumor or whatever else might be there. So, it's a bit tough to tell how big the tumor is or if there is one at all (could have been some spontaneous bleed). Right now we're going to hit it and all of extra little baddie cells that might be floating around with some chemo for a while. We'll scan again in a couple months and see how things look.
For now
I pretty much feel like crap. I've spent two to three weeks being in pain, exhausted, and having fevers and night sweats. Most of the pain has died down, I"m still exhausted, now nauseated, and generally trying to stave off the diarrhea that's supposed to be the main side effect of irinotecan. In a word, it sucks.
I've been mostly recovering at my sister's new place, which is pretty close to campus, so I guess that's a bit of a convenience. It's hard to focus on doing much else than just sitting around and vegetating though. Not exactly what I thought the end of the PhD was going to be. Anyhow, if anyone is up for visits or hug deliveries, I'm all up for it, if you can put up with my incessant hiccuping. . .
Wednesday, September 02, 2009
Can't fight the fever
(9/2/09)
Home at last!!
Well, only about two weeks later than I was expecting, I'm finally back home. I'm still having some low-grade fevers, most likely due to the post-embolization syndrome (that's a great catch-all, isn't it? "Oh doctor I'm having major headaches and bloody noses after my ankle sprain." "Oh that? That's just post-ankle-sprain syndrome. It's very common, nothing to worry about."). It turned out that I was having some slightly worrisome symptoms, as my fevers were mostly low grade until two nights ago, when I had one that spiked past 102F. Given everything that was happening, the doctors wanted to be conservative, so they kept me on antibiotics and watched me for another day. I had another CT scan yesterday to see if there were any other possible reasons for the fevers. The scan showed a couple things: my gall bladder is inflamed, and there were a couple of little bubbles inside of the liver mass. The theory is that the gel foam got into the arteries supplying the gall bladder, so it's not able to compress as much as it normally does. The liver bubbles are probably also from cells dying and releasing gas or from the gel foam itself, which has gas inside it. There's a minor possibility of infection, but it's not likely since my white counts weren't elevated.
Oh, the gall
Yesterday the docs laid out the options for dealing with the gall bladder issue:
Until then, I'm trying to heal and enjoy being at home. It's hard not to feel freaked out about this liver thing, but as usual, speculation only seems to lead to unanswerable and worrisome questions. Right now there's really no new information beyond what the scans showed: there was a mass that was bleeding near the edge of the liver capsule. The mass is pretty large, 4-6 cm, but it's unclear how much of that is blood and how much is something else. It seems unlikely that something that large would have grown in the span of a month and a half, but I suppose it's possible (or it's possible that it was much smaller but located precisely to cause a bleed). There's an outside chance this was all caused by a random blood clot, but the radiologists seem to think the mass doesn't look like it has a homogeneous make-up.
Home at last!!
Well, only about two weeks later than I was expecting, I'm finally back home. I'm still having some low-grade fevers, most likely due to the post-embolization syndrome (that's a great catch-all, isn't it? "Oh doctor I'm having major headaches and bloody noses after my ankle sprain." "Oh that? That's just post-ankle-sprain syndrome. It's very common, nothing to worry about."). It turned out that I was having some slightly worrisome symptoms, as my fevers were mostly low grade until two nights ago, when I had one that spiked past 102F. Given everything that was happening, the doctors wanted to be conservative, so they kept me on antibiotics and watched me for another day. I had another CT scan yesterday to see if there were any other possible reasons for the fevers. The scan showed a couple things: my gall bladder is inflamed, and there were a couple of little bubbles inside of the liver mass. The theory is that the gel foam got into the arteries supplying the gall bladder, so it's not able to compress as much as it normally does. The liver bubbles are probably also from cells dying and releasing gas or from the gel foam itself, which has gas inside it. There's a minor possibility of infection, but it's not likely since my white counts weren't elevated.
Oh, the gall
Yesterday the docs laid out the options for dealing with the gall bladder issue:
- Watch and wait - it's very likely the inflammation will go away on its own; apparently it's very rare for people to get CT scans this soon after an embolization, so it's entirely possible that this happens in most people and they just don't detect it;
- Insert a catheter into the gall bladder to drain the fluid and allow it to be less "stressed" for a while (this would require carrying around a little pouch that I would occasionally drain for 4-6 weeks); and
- Have surgery to remove the gall bladder.
Until then, I'm trying to heal and enjoy being at home. It's hard not to feel freaked out about this liver thing, but as usual, speculation only seems to lead to unanswerable and worrisome questions. Right now there's really no new information beyond what the scans showed: there was a mass that was bleeding near the edge of the liver capsule. The mass is pretty large, 4-6 cm, but it's unclear how much of that is blood and how much is something else. It seems unlikely that something that large would have grown in the span of a month and a half, but I suppose it's possible (or it's possible that it was much smaller but located precisely to cause a bleed). There's an outside chance this was all caused by a random blood clot, but the radiologists seem to think the mass doesn't look like it has a homogeneous make-up.
Sunday, August 30, 2009
A funny thing happened on the way to recovery
(8/30/09)
Out of the frying pan. . .
So I finally got out of the hospital on Tuesday night. My lung did its job in sealing itself up, though there was some residual air left in my pleural space that occasionally makes a fun gurgly feeling when I get up out of bed. I went to see my oncologist on Wednesday, and the good news is the pathology found no signs of cancer. No signs of anything else, either, though. No infection: viral, bacterial, or fungal. The prevailing theory is that it's a form of pneumonitis caused by radiation therapy and possibly enhanced by chemo, which of course is very rare and unexpected for the low dose of lung radiation I was getting. That should heal itself over time. The only treatment we could do now is for me to go on oral steroids, but I would have to do that for six months to prevent backlash with tapering, so I probably won't be doing that.
Okay, so here's the bad news: I'm in the hospital again. I was at home recovering from the surgery when Thursday I started having pain in my right side (surgery was on the left). At first I thought it was just a cramp or something, but I had a bit of a fever that night and by morning the pain hadn't gone away. My mom and sister took me into the ER on Friday, where luckily I was one of the first patients in their second floor "holding area" (this was around 12:30pm). They were surprisingly efficient, though my history probably helped expedite things along. I spent the afternoon being wheeled from the second floor down to the different radiology labs (chest X-ray, then ultrasound, then CT). While I was getting the ultrasound, the radiologist came in to tell me there was an abnormal mass in my liver, right where I was having pain. I was baffled. How could this be? Frankly, I'm still baffled. My latest PET-CT on July 16th was clear, and the chest CT I got on August 11th didn't show anything in the section of liver that was captured. I'm not sure anyone knows exactly what this is.
After the CT scan with contrast, the docs told me the mass was hemorrhaging and bleeding. Someone from interventional radiology came to talk to us in the ER, and he recommended that they do an embolization procedure to stop the bleeding. Although my bloodwork didn't indicate that the mass was bleeding quickly, its location made them worry that if it were to grow and protrude outside of the liver pocket, it could become pretty dangerous. They would do the embolization as a catheter-based procedure, entering an artery in the groin and navigating into the liver to deliver the embolizing agent that would stop the bleeding. It's funny - the application of my research focuses on these kinds of procedures (except I was focused on the heart) - so a nerdy part of me was excited to experience the procedure myself.
Embolization Nation
Things went pretty quickly after that; they wheeled me from the ER to one of the interventional radiology suites with the big C-arm for fluoroscopy (real-time X-ray). There was a bit of a discussion as to whether I was going to get any "sleepy" medication, since I had had a banana a few hours before and they usually want people to have nothing to eat or drink six hours beforehand. Luckily they decided it was okay to give me something. I was awake for the whole thing but definitely felt better being a little woozy rather than wide awake. After the burn of the numbing medication the procedure was relatively painless. . . that is until they actually embolized the thing. Right after they finished the procedure I started feeling this awful burning sensation in my abdomen and had a huge wave of nausea.
ICU, Do UC Me?
Afterwards they took me to the Intensive Care Unit (never stayed there before), where you'd think things would be calmer than other places. No such luck. First, I was in intense pain. They gave me a PCA (Patient-Controlled Analgesia) button which allows you to inject yourself with pain medication up to every 15 minutes. My PCA had hydromorphone, which is supposed to be 10x stronger than morphine. In addition, I was allowed to get Fentinol, but really it was only the Fentinol that seemed to help, and that would wear off after 10 minutes or so. Plus they could only give me 100-mg an hour, and it took about that much to really impact the pain at all. So basically I was getting about 10 minutes of real relief every hour.
I guess one of the benefits of the ICU is that you get one nurse per two people, so you have a lot of attention. The problem is that there are four beds to a room, and although I was somewhat of an anomaly there (I think they only put me there because of my medical history and because they wanted to keep close track to make sure the bleeding was stopped), the rest of the patients were not. One of the the four of us was totally quiet, so no issues there. Or at least, I didn't hear anything from him. One of the patients was pretty quiet, but not responsive, so the nurses had to literally yell out instructions to him over and over again throughout the night. Finally, my neighbor had become delirious with pain medication and had started refusing to take medication, wouldn't stay motionless for his bed-side X-ray, and was generally becoming a huge challenge for the nursing team. In any case, that night was a total disaster from a pain and quiet standpoint. I have to say I'm impressed that these nurses put up with this stuff on a daily basis.
Back on F-ground again
Luckily, they moved me the next day to good old F-ground (oncology ward), where apparently all the cancer patients have gotten better or something, because there's nobody here. I'm told it's been a slow week - there are tons of empty beds and they've even been sending nurses home because they're not needed. I have a pretty nice room with bed by the window and no roommate. The room faces a courtyard and the roof of the opposing building appears to be where the helicopter pad for the hospital is. The helicopters do a lot of business on Saturdays, it seems.
Yesterday I was still in a good amount of pain and pretty drugged up. I had a bad fever through the night and was feeling pretty crappy this morning. The oncology team decided to put me on antibiotics just in case, but the IR doc came by and helped explain what was going on. He said it was very common after these embolization procedures to develop post-embolization syndrome, which apparently consisted of fevers and nausea. He said it was probably not due to an infection, but that it was a good idea to take something to reduce the fever. He suggested taking ibuprofen rather than tylenol, since tylenol can have some liver toxicity (which is usually a problem for people getting these procedures). Apparently this was the best idea ever, since after I took an ibuprofen this afternoon my fever broke and my pain started subsiding. Could be coincidence, but what the hey, we'll take it. In any case I'm feeling a lot more awake now than I was before, too.
I was scheduled to have an appointment with my medical oncologist tomorrow, but I guess that may not happen exactly as planned. She's leaving for sabbatical on Tuesday, though, so she said she'd definitely come to see me if I were still in the hospital. I'm a little apprehensive to see her leave, but hopefully the new doctor I'll be seeing lives up to her good reputation.
Hopefully my next post will be out of the hospital and will have more answers about this liver business.
Out of the frying pan. . .
So I finally got out of the hospital on Tuesday night. My lung did its job in sealing itself up, though there was some residual air left in my pleural space that occasionally makes a fun gurgly feeling when I get up out of bed. I went to see my oncologist on Wednesday, and the good news is the pathology found no signs of cancer. No signs of anything else, either, though. No infection: viral, bacterial, or fungal. The prevailing theory is that it's a form of pneumonitis caused by radiation therapy and possibly enhanced by chemo, which of course is very rare and unexpected for the low dose of lung radiation I was getting. That should heal itself over time. The only treatment we could do now is for me to go on oral steroids, but I would have to do that for six months to prevent backlash with tapering, so I probably won't be doing that.
Okay, so here's the bad news: I'm in the hospital again. I was at home recovering from the surgery when Thursday I started having pain in my right side (surgery was on the left). At first I thought it was just a cramp or something, but I had a bit of a fever that night and by morning the pain hadn't gone away. My mom and sister took me into the ER on Friday, where luckily I was one of the first patients in their second floor "holding area" (this was around 12:30pm). They were surprisingly efficient, though my history probably helped expedite things along. I spent the afternoon being wheeled from the second floor down to the different radiology labs (chest X-ray, then ultrasound, then CT). While I was getting the ultrasound, the radiologist came in to tell me there was an abnormal mass in my liver, right where I was having pain. I was baffled. How could this be? Frankly, I'm still baffled. My latest PET-CT on July 16th was clear, and the chest CT I got on August 11th didn't show anything in the section of liver that was captured. I'm not sure anyone knows exactly what this is.
After the CT scan with contrast, the docs told me the mass was hemorrhaging and bleeding. Someone from interventional radiology came to talk to us in the ER, and he recommended that they do an embolization procedure to stop the bleeding. Although my bloodwork didn't indicate that the mass was bleeding quickly, its location made them worry that if it were to grow and protrude outside of the liver pocket, it could become pretty dangerous. They would do the embolization as a catheter-based procedure, entering an artery in the groin and navigating into the liver to deliver the embolizing agent that would stop the bleeding. It's funny - the application of my research focuses on these kinds of procedures (except I was focused on the heart) - so a nerdy part of me was excited to experience the procedure myself.
Embolization Nation
Things went pretty quickly after that; they wheeled me from the ER to one of the interventional radiology suites with the big C-arm for fluoroscopy (real-time X-ray). There was a bit of a discussion as to whether I was going to get any "sleepy" medication, since I had had a banana a few hours before and they usually want people to have nothing to eat or drink six hours beforehand. Luckily they decided it was okay to give me something. I was awake for the whole thing but definitely felt better being a little woozy rather than wide awake. After the burn of the numbing medication the procedure was relatively painless. . . that is until they actually embolized the thing. Right after they finished the procedure I started feeling this awful burning sensation in my abdomen and had a huge wave of nausea.
ICU, Do UC Me?
Afterwards they took me to the Intensive Care Unit (never stayed there before), where you'd think things would be calmer than other places. No such luck. First, I was in intense pain. They gave me a PCA (Patient-Controlled Analgesia) button which allows you to inject yourself with pain medication up to every 15 minutes. My PCA had hydromorphone, which is supposed to be 10x stronger than morphine. In addition, I was allowed to get Fentinol, but really it was only the Fentinol that seemed to help, and that would wear off after 10 minutes or so. Plus they could only give me 100-mg an hour, and it took about that much to really impact the pain at all. So basically I was getting about 10 minutes of real relief every hour.
I guess one of the benefits of the ICU is that you get one nurse per two people, so you have a lot of attention. The problem is that there are four beds to a room, and although I was somewhat of an anomaly there (I think they only put me there because of my medical history and because they wanted to keep close track to make sure the bleeding was stopped), the rest of the patients were not. One of the the four of us was totally quiet, so no issues there. Or at least, I didn't hear anything from him. One of the patients was pretty quiet, but not responsive, so the nurses had to literally yell out instructions to him over and over again throughout the night. Finally, my neighbor had become delirious with pain medication and had started refusing to take medication, wouldn't stay motionless for his bed-side X-ray, and was generally becoming a huge challenge for the nursing team. In any case, that night was a total disaster from a pain and quiet standpoint. I have to say I'm impressed that these nurses put up with this stuff on a daily basis.
Back on F-ground again
Luckily, they moved me the next day to good old F-ground (oncology ward), where apparently all the cancer patients have gotten better or something, because there's nobody here. I'm told it's been a slow week - there are tons of empty beds and they've even been sending nurses home because they're not needed. I have a pretty nice room with bed by the window and no roommate. The room faces a courtyard and the roof of the opposing building appears to be where the helicopter pad for the hospital is. The helicopters do a lot of business on Saturdays, it seems.
Yesterday I was still in a good amount of pain and pretty drugged up. I had a bad fever through the night and was feeling pretty crappy this morning. The oncology team decided to put me on antibiotics just in case, but the IR doc came by and helped explain what was going on. He said it was very common after these embolization procedures to develop post-embolization syndrome, which apparently consisted of fevers and nausea. He said it was probably not due to an infection, but that it was a good idea to take something to reduce the fever. He suggested taking ibuprofen rather than tylenol, since tylenol can have some liver toxicity (which is usually a problem for people getting these procedures). Apparently this was the best idea ever, since after I took an ibuprofen this afternoon my fever broke and my pain started subsiding. Could be coincidence, but what the hey, we'll take it. In any case I'm feeling a lot more awake now than I was before, too.
I was scheduled to have an appointment with my medical oncologist tomorrow, but I guess that may not happen exactly as planned. She's leaving for sabbatical on Tuesday, though, so she said she'd definitely come to see me if I were still in the hospital. I'm a little apprehensive to see her leave, but hopefully the new doctor I'll be seeing lives up to her good reputation.
Hopefully my next post will be out of the hospital and will have more answers about this liver business.
Monday, August 24, 2009
Breathe in, breathe out
(8/23/09)
"I went to the hospital and all I got was this lousy chest tube"
Hi everyone. I'm Alex's left lung. Alex didn't feel like writing a post, so he asked me to fill in for him. Strange request, since I'm the one who's all cut up, not him, but whatever. I guess he has reruns of Firefly to watch on Hulu or something. It's been an eventful few days, to say the least. The surgery on Wednesday went fine but recovery has been much slower than last time. This time they took out more chunks, though, and since I've been damaged a little by radiation and chemotherapy, I guess I'm not my usual springy self these days. Well, here's a quick rundown of what's been happening (times are approximate - I don't have a watch):
Wednesday (8/19/09) 11:40am - Showed up and checked in for surgery, which was nominally scheduled for 1:40pm
3:15pm - Finally called in from the pre-op waiting area. Strangely enough an old friend was assigned as the anesthesiology resident on the case, so that's nice though a little bizarre. He traveled with us through Africa in 2003 and was already a PhD in Materials Science at that point with a year of med school under his belt. He asks Alex if he wants someone else to be assigned to the case, but we both think he'll be fine for the job.
5pm - Wake up with pains all over me where they took chunks out and stapled me up. Alex says his throat was numb from the bronchoscope and he was having trouble swallowing for a few minutes. A chest tube is causing the bulk of the pain - it's this pretty thick tube that sucks out the extra fluid, blood, and air from the surgery. The end of the tube is placed between me and the chest wall, and the other end is hooked up to suction.
7pm - Transported to our room. We are delayed because they can't find a PCA device, which delivers morphine directly through your IV when you push the magic glowing green button, or so I'm told by The Fingers and Eyes. Quite a bit of nausea but that will wear off after a day or two. Besides, that's mostly Stomach's problem. . .
Thursday (8/20/09) 8am - In the morning they come and take an X-ray. Apparently there's a little bit of air between me and the chest wall (the pleural space), but they think they can take the chest tube out and the body will reabsorb the air. The chest tube is connected to this container that has some water in it, and another tube connects the container to the vacuum pump in the wall. They shut off the suction and put me on "water seal", which just means the chest tube is connected to the container, which has a bit of water in it.
9am - Another chest X-ray. Luckily they come in and do it in your room so you don't have to go anywhere.
10am - The surgery team comes in to take out the chest tube. They put on a bandage that's supposed to be airtight. I say "supposed to" because of course, it isn't. But more on that later.
10:30am - For some reason we have to be transported down to the radiology wing for another X-ray: what should be the final you-can-go-home verification.
11:00am - Doctors return. The air space is getting bigger - i.e. I'm collapsing. The docs take a look at the dressing, which (surprise!) looks like it may have leaked due to some fluid getting pushed out. So, instead of going home, we get another chest tube inserted through another hole - luckily this one is a little smaller than the last one, so it's supposedly less painful. The procedure is not pleasant. The Eyes said it was because it was all happening in a place they couldn't see, but Chest said it just plain hurt. Tomorrow we'll see how things look.
Friday (8/21/09)
Morning X-ray. I look expanded again and there seem to be no air leaks, so they take me off suction. Later Alex coughs a few times and his heart rate jumps up to the 140s (it had been in the low 100s). Another X-ray reveals I've almost fully collapsed again. Guess what? Back on suction to reinflate me. I guess I still have a hole somewhere.
Meanwhile Alex is supposed to be walking around and getting some activity in, but the suction tube is connected to the wall, so he can't really go very far. The "portable" suction device they bring is not battery powered, so that's not terribly useful. The interim solution is to extend the tubing a bit, which allows us to walk about 10 feet out of the room. It's like being on a leash, or so I'm told. Well the leash is actually a series of tubes in this case, which I'm told is like the internet.
Saturday (8/22/09)
Morning X-ray again. Looks good but there's still a small air leak. They can tell by looking at the water container and seeing if there are bubbles when Alex coughs. There are.
In the afternoon, Alex gets up to pee in the portable urinal (plastic container) and the heart monitor goes crazy and starts beeping again. Nurses rush in and everyone wants to know if he's okay (As I understand it this is a slightly embarrassing situation to be in) . It's not until Alex looks over and sees the end of the tube on the bed that they realize the suction has been disconnected. Of course I could have told them that from the gush of air I felt, but no one consulted me. I'm collapsed again but they quickly reattach the tube and suction. Apparently one of the pieces that screws the tube on came loose and detached.
Sunday (8/23/09)
Same story as yesterday. X-ray looks good but there's still an air leak. They'll look again tomorrow. Bowel starts finally doing some work and pushing stuff through, though we all have to spend a good amount of time in the bathroom waiting for him to get something done. I guess he's fighting the side effects of the pain meds, but man, it's kind of like he just went to sleep for four days. Anyhow as Bowel finishes and we're getting up, the heart monitor goes crazy again. Nurse comes in and checks the dressing and such, but everything looks okay. I guess some bodily functions are just too exciting for all of us right now. Heart seems especially agitated. He's been beating in the 100s even when we're all just sitting around. He seems to be calming down though.
We'll see what tomorrow holds. I'm trying to heal as quickly as I can, but I guess the chemo and radiation hurt me more than I thought.
Hope you're all doing well. This is Alex's left lung, signing out.
"I went to the hospital and all I got was this lousy chest tube"
Hi everyone. I'm Alex's left lung. Alex didn't feel like writing a post, so he asked me to fill in for him. Strange request, since I'm the one who's all cut up, not him, but whatever. I guess he has reruns of Firefly to watch on Hulu or something. It's been an eventful few days, to say the least. The surgery on Wednesday went fine but recovery has been much slower than last time. This time they took out more chunks, though, and since I've been damaged a little by radiation and chemotherapy, I guess I'm not my usual springy self these days. Well, here's a quick rundown of what's been happening (times are approximate - I don't have a watch):
Wednesday (8/19/09) 11:40am - Showed up and checked in for surgery, which was nominally scheduled for 1:40pm
3:15pm - Finally called in from the pre-op waiting area. Strangely enough an old friend was assigned as the anesthesiology resident on the case, so that's nice though a little bizarre. He traveled with us through Africa in 2003 and was already a PhD in Materials Science at that point with a year of med school under his belt. He asks Alex if he wants someone else to be assigned to the case, but we both think he'll be fine for the job.
5pm - Wake up with pains all over me where they took chunks out and stapled me up. Alex says his throat was numb from the bronchoscope and he was having trouble swallowing for a few minutes. A chest tube is causing the bulk of the pain - it's this pretty thick tube that sucks out the extra fluid, blood, and air from the surgery. The end of the tube is placed between me and the chest wall, and the other end is hooked up to suction.
7pm - Transported to our room. We are delayed because they can't find a PCA device, which delivers morphine directly through your IV when you push the magic glowing green button, or so I'm told by The Fingers and Eyes. Quite a bit of nausea but that will wear off after a day or two. Besides, that's mostly Stomach's problem. . .
Thursday (8/20/09) 8am - In the morning they come and take an X-ray. Apparently there's a little bit of air between me and the chest wall (the pleural space), but they think they can take the chest tube out and the body will reabsorb the air. The chest tube is connected to this container that has some water in it, and another tube connects the container to the vacuum pump in the wall. They shut off the suction and put me on "water seal", which just means the chest tube is connected to the container, which has a bit of water in it.
9am - Another chest X-ray. Luckily they come in and do it in your room so you don't have to go anywhere.
10am - The surgery team comes in to take out the chest tube. They put on a bandage that's supposed to be airtight. I say "supposed to" because of course, it isn't. But more on that later.
10:30am - For some reason we have to be transported down to the radiology wing for another X-ray: what should be the final you-can-go-home verification.
11:00am - Doctors return. The air space is getting bigger - i.e. I'm collapsing. The docs take a look at the dressing, which (surprise!) looks like it may have leaked due to some fluid getting pushed out. So, instead of going home, we get another chest tube inserted through another hole - luckily this one is a little smaller than the last one, so it's supposedly less painful. The procedure is not pleasant. The Eyes said it was because it was all happening in a place they couldn't see, but Chest said it just plain hurt. Tomorrow we'll see how things look.
Friday (8/21/09)
Morning X-ray. I look expanded again and there seem to be no air leaks, so they take me off suction. Later Alex coughs a few times and his heart rate jumps up to the 140s (it had been in the low 100s). Another X-ray reveals I've almost fully collapsed again. Guess what? Back on suction to reinflate me. I guess I still have a hole somewhere.
Meanwhile Alex is supposed to be walking around and getting some activity in, but the suction tube is connected to the wall, so he can't really go very far. The "portable" suction device they bring is not battery powered, so that's not terribly useful. The interim solution is to extend the tubing a bit, which allows us to walk about 10 feet out of the room. It's like being on a leash, or so I'm told. Well the leash is actually a series of tubes in this case, which I'm told is like the internet.
Saturday (8/22/09)
Morning X-ray again. Looks good but there's still a small air leak. They can tell by looking at the water container and seeing if there are bubbles when Alex coughs. There are.
In the afternoon, Alex gets up to pee in the portable urinal (plastic container) and the heart monitor goes crazy and starts beeping again. Nurses rush in and everyone wants to know if he's okay (As I understand it this is a slightly embarrassing situation to be in) . It's not until Alex looks over and sees the end of the tube on the bed that they realize the suction has been disconnected. Of course I could have told them that from the gush of air I felt, but no one consulted me. I'm collapsed again but they quickly reattach the tube and suction. Apparently one of the pieces that screws the tube on came loose and detached.
Sunday (8/23/09)
Same story as yesterday. X-ray looks good but there's still an air leak. They'll look again tomorrow. Bowel starts finally doing some work and pushing stuff through, though we all have to spend a good amount of time in the bathroom waiting for him to get something done. I guess he's fighting the side effects of the pain meds, but man, it's kind of like he just went to sleep for four days. Anyhow as Bowel finishes and we're getting up, the heart monitor goes crazy again. Nurse comes in and checks the dressing and such, but everything looks okay. I guess some bodily functions are just too exciting for all of us right now. Heart seems especially agitated. He's been beating in the 100s even when we're all just sitting around. He seems to be calming down though.
We'll see what tomorrow holds. I'm trying to heal as quickly as I can, but I guess the chemo and radiation hurt me more than I thought.
Hope you're all doing well. This is Alex's left lung, signing out.
Tuesday, August 18, 2009
Keep riding that roller coaster
(8/17/09)
Well, I'm hoping I don't get stuck on a stopped ride like these people, but I'd also like to get off of this thing at some point. My roller coaster appears to have more downs than ups of late, which makes for a strange ride.
The short story is, I'll be getting more surgery on Wednesday (August 19th) to see what's been wrong with my lungs. Although my most recent PET-CT was clear except for the two nodules that were there before and seemed to be going away, I've been having respiratory symptoms that have gotten progressively worse over the past month or so. It started with a slight chest tightness when I would inhale deeply. I mentioned this to my doctor in mid-July but no one thought much of it, including me. After Lake Shasta (see last post) I felt more tightness and pretty serious fatigue and went to the on-call doctor. She said my lungs sounded fine and didn't have any of the characteristic wheezing or other issues that come with respiratory infections. Also, my red cell counts were fine, so I wasn't dangerously anemic (which can make you feel fatigued, but so can chemo). The following week I was starting to cough a bit with deep inhalations, and I went to see the radiation oncologist resident (my rad onc was out of town) to see if there was any connection to the lung radiation I've had. She said it probably wasn't due to the radiation, and a chest X-ray didn't show anything unusual.
Meanwhile the tightness and coughing were getting worse and I went to see my cardiologist, to see if there were any heart issues that could be causing it. I had a cardiac ultrasound that was normal, and the bloodwork didn't show anything substantial. I would wake up in the morning with my chest feeling pretty tight, and I started having to have 10-15 minute hacking fits every day (dry cough) just to feel like I could breathe somewhat normally. I went back to my cardiologist, who said it'd be good to treat this as if it were an infection but also that I should get a chest CT to make sure it wasn't something more serious (he seemed to think it could be a blood clot in my lungs). In any case, he gave me a steroid inhaler and some antibiotics.
I had the CT scan last Tuesday and that's when they saw abnormal gunk in my left lung, though no blood clots. I say gunk because it's hard to know what it is. There's a diffuse something there that has what they call a "ground-glass" appearance. Apparently it's not a radiation side effect like radiation pneumonitis (something that can happen after lung radiation), and it doesn't look like normal tumor either. It has the appearance of an infection of some sort, but my oncologist won't say anything definitively about it until we take a chunk out and find out what it is. Hence, more surgery. A needle biopsy might be possible, but there's no guarantee they can get enough tissue to get a good diagnosis.
So, I'm getting another VATS (Video-Assisted Thoracic Surgery). It'll be pretty much the same procedure as the previous lung surgery I had in February, where they inserted tools through a couple of small incisions in my side and cut out the tumor spot that was there (I think they'll even use the same incision points). This time, the surgeon will take out a couple pieces of the "ground-glass" stuff, as well as the two nodules that were there before (the ones we zapped with radiation), and a couple of spots that might be new nodules. Oh, that was the other bit of fun news the CT showed - the possibility of new nodules. Guh. Hopefully they're just part of "the process", which is what my oncologist calls this ground-glass stuff, and hopefully "the process" is not something too serious.
Chemo-coaster
Meanwhile, I'm supposed to start this new regimen of chemo any day now. Originally it was three drugs - Irinotecan, Temodar, and Vincristine - but my doctor decided to drop the Vincristine, because I've been having some neurological issues (i.e. dizziness) with the last regimen (Navelbine and Cytoxan). She didn't want to aggravate them with more neuro-toxic Vincristine. Actually it's the Irinotecan that's supposed to be the nasty stuff, though it's shown to be a good drug against rhabdo. When I finally get to doing this, I'll be taking it once a day for two weeks (1-2 hour infusion), with one week off to end the cycle. If I tolerate it well, we'll do at least two cycles and maybe alternate with the Navelbine/Cytoxan I was on before. The main side effect of Irinotecan is diarrhea, so I'll be taking a bunch of stuff to try and fight that off, including a daily antibiotic and a 3-times-a-day dose of activated charcoal (Janet was quick to point out, "I put that in my fish tank."). The charcoal should help keep my GI tract nice and filtered so the Irinotecan doesn't upset things too much. That's the theory, anyway.
I've been off of any kind of chemo for a couple weeks now, and I'm starting to feel a little antsy about it. Hopefully we'll clear up this lung thing and get back on track with chemo soon. It looks like the way things are going, I'll still be getting treatment at least through December. On top of all this, my medical oncologist is going on sabbatical at the end of the month. Supposedly the doctor covering her patients is really good, but it's pretty crappy timing.
Anyhow, wish me luck on the surgery!
Well, I'm hoping I don't get stuck on a stopped ride like these people, but I'd also like to get off of this thing at some point. My roller coaster appears to have more downs than ups of late, which makes for a strange ride.
The short story is, I'll be getting more surgery on Wednesday (August 19th) to see what's been wrong with my lungs. Although my most recent PET-CT was clear except for the two nodules that were there before and seemed to be going away, I've been having respiratory symptoms that have gotten progressively worse over the past month or so. It started with a slight chest tightness when I would inhale deeply. I mentioned this to my doctor in mid-July but no one thought much of it, including me. After Lake Shasta (see last post) I felt more tightness and pretty serious fatigue and went to the on-call doctor. She said my lungs sounded fine and didn't have any of the characteristic wheezing or other issues that come with respiratory infections. Also, my red cell counts were fine, so I wasn't dangerously anemic (which can make you feel fatigued, but so can chemo). The following week I was starting to cough a bit with deep inhalations, and I went to see the radiation oncologist resident (my rad onc was out of town) to see if there was any connection to the lung radiation I've had. She said it probably wasn't due to the radiation, and a chest X-ray didn't show anything unusual.
Meanwhile the tightness and coughing were getting worse and I went to see my cardiologist, to see if there were any heart issues that could be causing it. I had a cardiac ultrasound that was normal, and the bloodwork didn't show anything substantial. I would wake up in the morning with my chest feeling pretty tight, and I started having to have 10-15 minute hacking fits every day (dry cough) just to feel like I could breathe somewhat normally. I went back to my cardiologist, who said it'd be good to treat this as if it were an infection but also that I should get a chest CT to make sure it wasn't something more serious (he seemed to think it could be a blood clot in my lungs). In any case, he gave me a steroid inhaler and some antibiotics.
I had the CT scan last Tuesday and that's when they saw abnormal gunk in my left lung, though no blood clots. I say gunk because it's hard to know what it is. There's a diffuse something there that has what they call a "ground-glass" appearance. Apparently it's not a radiation side effect like radiation pneumonitis (something that can happen after lung radiation), and it doesn't look like normal tumor either. It has the appearance of an infection of some sort, but my oncologist won't say anything definitively about it until we take a chunk out and find out what it is. Hence, more surgery. A needle biopsy might be possible, but there's no guarantee they can get enough tissue to get a good diagnosis.
So, I'm getting another VATS (Video-Assisted Thoracic Surgery). It'll be pretty much the same procedure as the previous lung surgery I had in February, where they inserted tools through a couple of small incisions in my side and cut out the tumor spot that was there (I think they'll even use the same incision points). This time, the surgeon will take out a couple pieces of the "ground-glass" stuff, as well as the two nodules that were there before (the ones we zapped with radiation), and a couple of spots that might be new nodules. Oh, that was the other bit of fun news the CT showed - the possibility of new nodules. Guh. Hopefully they're just part of "the process", which is what my oncologist calls this ground-glass stuff, and hopefully "the process" is not something too serious.
Chemo-coaster
Meanwhile, I'm supposed to start this new regimen of chemo any day now. Originally it was three drugs - Irinotecan, Temodar, and Vincristine - but my doctor decided to drop the Vincristine, because I've been having some neurological issues (i.e. dizziness) with the last regimen (Navelbine and Cytoxan). She didn't want to aggravate them with more neuro-toxic Vincristine. Actually it's the Irinotecan that's supposed to be the nasty stuff, though it's shown to be a good drug against rhabdo. When I finally get to doing this, I'll be taking it once a day for two weeks (1-2 hour infusion), with one week off to end the cycle. If I tolerate it well, we'll do at least two cycles and maybe alternate with the Navelbine/Cytoxan I was on before. The main side effect of Irinotecan is diarrhea, so I'll be taking a bunch of stuff to try and fight that off, including a daily antibiotic and a 3-times-a-day dose of activated charcoal (Janet was quick to point out, "I put that in my fish tank."). The charcoal should help keep my GI tract nice and filtered so the Irinotecan doesn't upset things too much. That's the theory, anyway.
I've been off of any kind of chemo for a couple weeks now, and I'm starting to feel a little antsy about it. Hopefully we'll clear up this lung thing and get back on track with chemo soon. It looks like the way things are going, I'll still be getting treatment at least through December. On top of all this, my medical oncologist is going on sabbatical at the end of the month. Supposedly the doctor covering her patients is really good, but it's pretty crappy timing.
Anyhow, wish me luck on the surgery!
Sunday, July 26, 2009
July July July
(7/26/09)
Every so often I remember that The Onion is available to entertain me, and it's like opening a comedy Christmas present any time I'm in the mood for something funny. The writers have just my kind of humor, but in the most irreverent and (often) offensive way. For instance, did you all know I'm good for your health? The print version is quite good these days, as they have a lot of China articles (since the paper has reportedly been sold to a Chinese conglomerate). You should go ahead and take a look (after you read my post, of course. But after all, if you're reading this, you must have some time on your hands, eh?).
Anyhow, so let's see what's happened this month. . .
Cycle delay
Last time I posted my counts were too low for me to get treated. I saw my doctor again the following week (Wed, 7/8/09), and we decided that even though my counts were up a bit and treatable, we would delay a little longer and instead of finishing cycle 2, move onto cycle 3 the following Monday. I'm not quite sure why we did this, but it did make some sense at the time. I think we decided to let my body recover a bit more before taking on another full cycle. So I ended up having two weeks off from chemo, during which I was still having weird dizziness and lightheadedness issues. The brain MRI I had in June was clear, so I started thinking maybe it was due to something else. . . luckily nothing else serious has cropped up. I saw a neuro-oncologist (7/17/09), who helped to rule out any weird neurological issues - he thinks the likely cause of the dizziness is just a rare side effect from the navelbine. Yay. It's like everytime I roll the dice I get better at coming up with statistical improbabilities. I hope that'll keep happening for me for the good outcomes, too.
Next Steps
On the 8th we also discussed next steps. Hopefully if I can get through the rest of this cycle without my counts tanking too much, we're going to switch to another set of drugs: Irinotecan, Temodar, and Vincristine. The idea is to catch the cancer off-guard and not allow it to build up resistance to the drugs I'm taking now.
Big News
I had a PET-CT (7/16/09) scan to give us a baseline for the upcoming treatment plan. A PET-CT uses a radioactive tracer that runs through the entire body. Any places that have higher sugar uptake than normal tissue (like tumors) tend to light up brightly on the scan. They overlay the PET with CT so they can see the anatomical features. My latest scan was mostly clear, aside from the two lung nodules. On the scan they had shrunk, and the radiologist couldn't tell if they were actually still active (as tumors) or if they were just inflamed from the radiation (inflammation can also light up on PET, which is why they typically won't do it directly after you've had surgery). So I'm calling this one clear, with those little nodules dying a slow, painful death.
Lake Shasta
The magnanamous Mike Ying organized a great trip to Lake Shasta last weekend, and though I'm feeling pretty exhausted this week, I'm really glad I went. We had 16 people on a rented houseboat and speed boat, and we spent the weekend lounging, swimming, wakeboarding/waterskiing/tubing, and having an all-around relaxing time. There was a ton of beer (I stuck to the EANABS*) and lots of tasty food. I tried waterskiing for the first time and through Kelly's skillful instruction was able to stand up the first time, but not for very long. It was kind of down-hill after that first try, but I'm eager to try again. I guess we always did the snow version when I was growing up, so I never really got into the water sports. There are a couple of photos below, but you can check out the rest of the pics here (Saturday) and here (Sunday).
I think some combination of the weekend fun and cumulative chemo has tired me out, though, because I was super super fatigued this week. It really sucks feeling that tired - one day I slept in pretty late, took two naps, and was still tired. Maybe I'm just bored ("I once thought I had mono for an entire year, but it turned out I was just really bored." - Name that movie, anyone?) Hopefully this weekend of sitting around doing nothing has helped me charge up for the week :P
* EANABS = Equally Attractive Non-Alcoholic Beverages
Morning glass on the lake.
Steph and I try our hand at staying on some inner tubes.
Thursday, July 02, 2009
Counts down, hair OOC
(7/2/09)
Aside: By the way, I've added a handy feature over to the right --->
It lets you get email versions of my posts, so you'll be sure to get the latest and greatest updates. Don't worry, I'll only sell your email address if I can get at least $2 for it.
Brief update today. My counts were too low on Monday to get treated. Boo. I'll see my doc again next week to see if they've come up again, but I've had a sore throat for the past couple days, which will probably not help matters much. Otherwise I'm still a little lightheaded now and then, but it seems to be getting progressively better. I've been having some paranoid thoughts about little aches and pains I keep feeling, but on the whole I'm trying to ignore those - after all, my body is doing its normal aging thing, too, so random aches and pains are normal, right?
Anyhow, my hair was starting to get out of control, so I finally got it cut. Below are some of shots of the "before" situation. These shots don't quite do it justice, but trust me, it was getting out of hand. You'll just have to wait in giddy anticipation (or come see me in person) to see the "after" look. . .
June 7, 2009 - I've never had curly hair before. It's kind of cool, but also very unwieldy, as you'll see in the shots below.
June 22, 2009 - By this time, the hair was really getting out of control, especially the stuff growing out of my sideburns - on one side it would grow straight down, but on the other side it would curl out. And back. And all over the place. Cuh-razy.
Turns out its kind of hard to take pictures of the back and top of your head by yourself. But the thing I really noticed was the swirl of hair around what appears to be a bald spot. . . Well, just another sign that I'm still alive though getting older. . .
Friday, June 26, 2009
Ma' Brain
(6/26/09)
Well, according to the MRI I had yesterday, my brain is completely normal, aside from a couple of loose screws near the amygdala. Heh, what a funny word. Amygdala.
Today I'm listening to Michael Jackson. I saw a guy wearing a single white glove when I came into my building today, and I was wondering if that was a tribute or if the guy just had bad eczema or something.
On a completely different note, here's your pic of the post (I decided I will try to have at least one picture per post - I don' t have that many pics on this computer, so I dug up this one):
This is a picture of a picture from high school, when a bunch of us went up to Niagara Falls on our way to our friend's family cabin in Canada. I told my friends to put their hands on the railing so I could take a picture. Later, when I was taking a black and white photography class, I took the picture and put it on the railing in my dorm, with my hand added on. A little cheesy, but I thought the image came out nicely.
Well, according to the MRI I had yesterday, my brain is completely normal, aside from a couple of loose screws near the amygdala. Heh, what a funny word. Amygdala.
Today I'm listening to Michael Jackson. I saw a guy wearing a single white glove when I came into my building today, and I was wondering if that was a tribute or if the guy just had bad eczema or something.
On a completely different note, here's your pic of the post (I decided I will try to have at least one picture per post - I don' t have that many pics on this computer, so I dug up this one):
This is a picture of a picture from high school, when a bunch of us went up to Niagara Falls on our way to our friend's family cabin in Canada. I told my friends to put their hands on the railing so I could take a picture. Later, when I was taking a black and white photography class, I took the picture and put it on the railing in my dorm, with my hand added on. A little cheesy, but I thought the image came out nicely.Thursday, June 25, 2009
Woozy Woo
(6/25/09)
Well, it seems hydration is not the total solution after all. I've been feeling pretty woozy and light-headed the past couple of days - it got worse after my treatment on Monday. This is actually a good thing, as I believe it's a side effect of the Navelbine, though not a common one it seems. Just to be sure, I'm going to have a brain MRI tomorrow (actually later today, as it's quite late). Sometimes the light-headedness comes from standing too quickly, but sometimes it just seems to be there when I'm sitting and walking around. It definitely makes it hard to concentrate and get stuff done, or even just do not-so-productive things. Urgh.
Usually, I am not so acutely aware of how my body has revolted against me - I can just go about my daily business for the most part - but this has been driving me a little nuts. If it is a side effect, I'm not sure what the solution is, other than to grin and bear it - and hope that it goes away or I get used to it. It's possible that it's due to vasodilation caused by the chemo, where the blood vessels (esp. in the legs) don't constrict when they're supposed to (e.g. when you stand up), in which case wearing compression socks is supposed to help. I tried this out yesterday, but to little avail. My doc wants me to give it more of a chance. I guess I'll try again tomorrow. Nothing like stylin' in over-the-calf black socks.
And now. . . some pics for the day:
My friend Alexis, her daughter Maya, and husband Najib go to the local organic farm to pick up fresh produce every Saturday outside of Boston. Two Saturdays ago (6/13/09), I got to go with them.
You get to pick a certain number of vegetables from the stand per membership.
After picking up stuff from the stand, we went to the field to pick some sugar snap peas, of which Maya became immediate keeper and distributor once we got in the car.
Just don't get the number wrong when you request how many peas you want. "You can have 5, 10, or 12 peas. How many do you want?" "I guess I'll have 5." Looks at you with a slight frown. "Are you sure you want 5. . . ?" She doesn't flat out say your choice was wrong, but it's definitely in the subtext.
Thursday, June 18, 2009
Hydration Nation
(6/17/09)
A Starry Aside
You know, some days I feel like I should be an actor. I mean, the landscape of Asian-American male actors is pretty grim. It's either kung fu action stars (Jackie Chan, Jet Li), good actors who have been forced to become kung fu action stars (Chow Yun Fat), or, well, Harold. Is Harold (John Cho) really all we've got? He's the only guy they could get to play Sulu? Dude's not even Japanese (I know, we all look alike anyway).
On to more important things
Things have been going fairly well lately, though there are always new fun challenges to face. I started my new treatment about a month ago, and so far it's mostly been easier. I'm taking Cytoxan by mouth every day and then getting Vinorelbine (Navelbine) once a week. My time in the hospital is nominally much shorter, and the side effects haven't been too bad. The main issue seems to be staying well hydrated.
When I got my first treatment (May 13), I felt fine afterwards, and I decided I could handle going to Yosemite with some friends (hmm. . . i should post pictures of that). On the trip we did a short hike, during which I came close to passing out after feeling really light-headed on the way up. Later on I started feeling weird heart palpitations, so I went in to see a cardiologist. He thought the most likely explanation was dehydration. After ruling out anything more serious with a cardiac ultrasound, some bloodwork, and a Holter monitor (it's an EKG logging device that you wear for 24 hours to see if you have any weird arrythmias), it seemed that hydration was the key thing. It took a few days of drinking a lot of fluids to get back to feeling normal again. The palpitations also went away, so that seemed to work.
The other weird thing was that I kept feeling this burning sensation in my throat/esophagus. I suspected radiation but my radiation oncologist seemed baffled that I would be affected by the radiation in this way. My cardiologist suspected acid reflux, so he gave me something for that, which actually seems to have helped. So these issues mostly resolved after a bit. . .
Then last week I went to Boston to see some friends and attend an appropriate technology workshop run by Amy Smith (from MIT) at her family's home in Maine (hmm. . . I should post pictures of that). I started feeling light-headed again toward the end of the trip, despite drinking tons while I was there. Since I've been back it seems to be just as bad, despite my drinking lots. I got a blood pressure monitor to use at home, and my BP is running pretty low, even for me (mine is usually fairly low).
Prior to going to Boston I was working pretty hard on our final project (the India project), which ended up pretty nicely (hmm. . . I should post pictures of that, too). Point being, some combination of lack of sleep and dehydration might be at play here. In any case, I'm in the ITA right now getting some fluids. They drew some blood, too, so maybe that'll show something enlightening about my condition. Apparently this is a common thing, so hopefully it's nothing serious.
More info soon. . .
Wednesday, May 13, 2009
First Dose (again)
(5/13/09)
Well, it turns out that Dr. J and I were thinking along similar lines. The tradeoffs were these:
- Do chemo first and risk the tumors growing and becoming too unwieldy for radiation to handle
- Do radiation to the lungs first and risk having disease pop up somewhere else in the body
Solution: do both at the same time!
But of course, so simple! So that's the plan right now, to wipe out the disease in the lungs and clear it out everywhere else, too, at the same time. We'll probably switch up the chemo drugs after radiation is done, too, so we can keep the cancer from becoming resistant.
It sucks of course, but so far this treatment is looking a lot easier to handle. I have daily cytoxan by mouth for 28 days, and on days 1, 8, and 15, I get a 10-minute push (injection) of navelbine (vinorelbine). Hopefully aside from losing my hair, I won't have too many side effects. Starting Friday I'll go in for radiation therapy every day for 15-20 minutes for 10 days. The radiation will target both of my whole lungs with a larger dose going to the two nodules.
Getting on a path to solving the problem always makes one feel better, although at this point I'm starting to get good at dealing with uncertainty. . .
As a parting note for this post, I have to give a shout out to one of my personal heroes, Steve, who is battling Ewing's Sarcoma and just came out of a really rough couple of weeks. He and his wife Ann are such a strong, upbeat couple, and their positive strength is incredibly infectious. Steve, you're a freakin' champion!! Ann, you're incredible, too!
Thursday, May 07, 2009
Frak!!!
NYC, consultations, and more lumps
(5/7/09)I was in New York last week to consult with a pediatric oncologist at Memorial Sloan-Kettering about my situation. I arrived on Saturday night and spent a couple days hanging out with friends and catching up. That part was fantastic. Sarah came down from New Haven, and Amina came up from DC. Anthony and Lisa (NYers) were there, too, and we hung out chatting at Amina's brother Asheq's apartment, then went out for some late night Korean fried chicken (very tasty). The next day Anthony, Sarah, Manasi, and I had a nice brunch downtown and spent the afternoon lounging and tossing the frisbee (ahem - "disc", that is) in Central Park. Anthony's friend Dave joined us later and we had an impromptu progressive dinner consisting of pearl milk tea from St. Alps Teahouse, tasty pork buns and cornmeal/chocolate-marshmallow cookies from a place called Milk, pommes frites with tasty sauces from another place (I think it's aptly called "Pommes Frites"), and gelato at the Whole Foods gelato stand. On Monday I had a nice lunch with my friend Stephanie, who's about to get married and move to Atlanta (Hotlanta!), and went climbing with Anthony and Randy. Wednesday I got to meet up with Holly and Anthony again, and stopped by Jessica's office to say hi. So that was all good stuff.
Not so good stuff - The doctor in NY was very blunt about my situation. He painted a grim picture for my chances but did suggest a combination of whole-lung radiation therapy along with low-dose maintenance chemotherapy as a possible way to stave off further recurrence. Still the numbers weren't good. It was a bit of a shock. My mom and I were unprepared for him to be so negative about the fact that I had had a recurrence. There's always the chance of pulling through and being in that minority statistic. In any case, his recommendation was that I have a CT scan of my chest, and if that was clear, to proceed with this preventative therapy measure.
So when I came back to CA, I had a CT scan of my chest. The scan was last Friday (May 1st). Then on Wednesday, this happened. . .
(5/6/09) Short Story - Doctor's Appointment back in CA
Waiting again. My mom, my sister, and I were in the small examination room when a knock came at the door. "Hello?" I said. A doctor I hadn't seen before backed himself through the curtain while carrying a small open laptop computer and some papers. He was about my height, dark-skinned, probably of South Asian descent. He introduced himself as an oncology fellow working with my doctor. We had taken up the chairs in the room, so he perched himself on the edge of examination table and balanced the laptop on his knees. "How are you doing?" he asked. "Any new pains?" Going through the motions again. "Any new lumps or bumps? Any problems urinating?" He was typing in my responses as I gave them. There was something unnerving about the laptop, the back of a screen like a little barrier between us. "Why don't you come sit on the table so I can examine you, and then I'll tell you about the CT scan results from Friday." He was stalling. I sat up on the table and he went through his exam. Shining light into my eyes, thumping on my back, feeling for lymph nodes under my arms. Was he being more thorough for a reason? Stethescope on my back. "Deep breath." Inhale, exhale. Move stethescope. Inhale, exhale. . . He finished and sat down on the stool where I was sitting before. "So, the scan results came back and there's a new nodule in your left lung." Shit.
Actually, there are two. . .
One nodule is 2 cm (WTF? 2 cm in 2 months???), and the other is 7mm. We're still sorting out the treatment steps, but it looks like it will be some combination of radiation (to the lungs) and chemotherapy. The NY doc suggested chemo first, but if that doesn't work, the tumors may have grown too big for radiation to handle them effectively. If we do radiation first, there maybe metastatic disease elsewhere in my body that will have a chance to grow and do some badness. My vote is to try and do both at the same time - radiation and some low-dose chemotherapy, maybe followed by some harder chemotherapy.
Actually, scratch that. My vote is for this f@#king cancer to get the f@#k out of my body!!!
Tuesday, April 21, 2009
Hawaii, India Pics
Happy Earth Day Eve!
(4/21/09)Short post today - just wanted to put in a link to Hawaii Pictures, which my friend Anthony graciously put together. Given that Anthony did not come with me to India, however, I've had to spend a bunch of time putting those pictures up myself. Hope the result is enjoyable. . .
I'm off to NY on Saturday for a few days, but will be back on Wed.
Random thoughts: I was thinking the other day that I've lost a bit of creativity in my life, and I don't know exactly how to get it back. One thing I miss is creative writing. I was thinking that I might start doing a "one paragraph short story", inspired by my friend Jeff's daily minute of music, though I don't think I could do one per day. It might have to be one per week. Honestly I'm not sure I've ever done creative writing outside of classes, but why not start now? We'll see.
Anyone want to work on this with me or make a contribution? Got other ideas for injecting creativity into life?
Friday, March 20, 2009
Ceviche, kalua pig, and garam masala
Travels, travels, travels!
(04/02/09)
Hi all! It's been a while since I posted anything here, so I thought I'd drop a line to catch everyone up on what's been going on. It's been a couple months of travel here and there, interspersed with some health scares. I was in Mexico for a bit, then back home, then in Hawaii, back home for a few days, and I just got back from India today. Whew!
A week after my defense (Feb. 20) I went to Mexico for a few days with some buddies from high school (Lisa, Anthony, Charles, Sarah, and Janet). We rented a house in Playa del Carmen and had a relaxing time: did a little sight-seeing, a little beach-laying, and a little snorkeling/scuba diving. Prior to going on the trip, I had an appointment with my thoracic surgeon, who gave me the okay to "do anything I wanted." In my tame mind, that amounted to being able to go swimming, which I thought was a pretty big coup. Anthony and Charles cooked up a storm and kept us very well fed, thanks to Sarah's forethought in bringing a plethora of baggies filled with various spices.
My contribution for the weekend was Bananagrams, a game that amounts to speed-Scrabble without the Scrabble board. You basically start with a bunch of Scrabble tiles, and you form words in Scrabble-style as quickly as you can. When you use up your letters, you say "take two" and everyone takes two more tiles. This goes on until all the tiles are used up and someone has formed words out of all of his or her tiles. Its only link to bananas is that it comes in a banana-shaped pouch (actually, the rules above were ones we made up - the actual rules are a little more complex and involve using banana-related words like "peel" and "split"). In any case, it turned out to be quite the addictive activity and consumed much of our down-time. Anthony posted pics on his Picasa page here.
Can you tell we're in Mexico?
Now can you tell?
Paranoia
So, I came back from Mexico feeling pretty relaxed, though my surgery site was still healing and was still a bit sore. Nevertheless, I decided to see if I could go climbing again. I took it easy the first time and just did very low-effort stuff. The next time I felt better, so I stepped things up a bit, but I noticed that my left groin area was feeling a little sore. I couldn't tell if there was any weird swelling there or not, but I wasn't sure if it was from climbing or something else. It was starting to freak me out a bit, to the point where I kept trying to feel for lumps there. I was scheduled for a CT scan that Monday (Mar. 2) of my chest, abdomen, and pelvis, but I wasn't going to see the doctor until the following Monday. I decided that I wanted to get this thing checked out, so I scheduled an appointment for Wednesday. Luckily, it turned out to be nothing that anyone could feel. My guess is I just strained the muscle a little.
More Paranoia
The follow-up scan turned out to be clear - the pelvis area is clear, the other nodule in the left side is no longer there (actually just barely visible, but it hasn't changed, which is the good part). The right nodules are holding steady at miniscule and minisculer. The pathology from the nodule they removed was no good - same malignancy as before - but they were able to remove the whole thing with good margins. Right now we're in a bit of a holding pattern as we wait to see what happens (or better yet, what doesn't happen). I'm trying to set up an appointment with a doctor in NY to see what other treatment options I might have, but right now treating it without knowing what's there doesn't make a whole lot of sense.
I was feeling great about the clear scans, but then I guess someone somewhere decided a break was not entirely in order. The following Sunday I noticed another lump, this time in the right groin area. The weird thing is that it seemed like it would go away when I lay down to sleep at night. It didn't quite feel like the previous lumps I've had, but I was nevertheless freaked out. I went back to my doctor that week and we determined that it was probably a hernia - normally, this would be a huge drag and annoyance, but at this point, anything that's not cancer is a huge relief. We scheduled an ultrasound for later that day, just to get it checked out and make sure. The radiologist confirmed that it was probably just a mild hernia and I should "just ignore it." Right. Anyway, it's not too bothersome, and I was able to go on my next trip to Hawaii (Mar. 12-17) with no problems. Lots of swimming, snorkeling, hiking, and an attempt at surfing. More on this in the next post. . .
(04/02/09)
Hi all! It's been a while since I posted anything here, so I thought I'd drop a line to catch everyone up on what's been going on. It's been a couple months of travel here and there, interspersed with some health scares. I was in Mexico for a bit, then back home, then in Hawaii, back home for a few days, and I just got back from India today. Whew!
A week after my defense (Feb. 20) I went to Mexico for a few days with some buddies from high school (Lisa, Anthony, Charles, Sarah, and Janet). We rented a house in Playa del Carmen and had a relaxing time: did a little sight-seeing, a little beach-laying, and a little snorkeling/scuba diving. Prior to going on the trip, I had an appointment with my thoracic surgeon, who gave me the okay to "do anything I wanted." In my tame mind, that amounted to being able to go swimming, which I thought was a pretty big coup. Anthony and Charles cooked up a storm and kept us very well fed, thanks to Sarah's forethought in bringing a plethora of baggies filled with various spices.
My contribution for the weekend was Bananagrams, a game that amounts to speed-Scrabble without the Scrabble board. You basically start with a bunch of Scrabble tiles, and you form words in Scrabble-style as quickly as you can. When you use up your letters, you say "take two" and everyone takes two more tiles. This goes on until all the tiles are used up and someone has formed words out of all of his or her tiles. Its only link to bananas is that it comes in a banana-shaped pouch (actually, the rules above were ones we made up - the actual rules are a little more complex and involve using banana-related words like "peel" and "split"). In any case, it turned out to be quite the addictive activity and consumed much of our down-time. Anthony posted pics on his Picasa page here.
Can you tell we're in Mexico?
Now can you tell?Paranoia
So, I came back from Mexico feeling pretty relaxed, though my surgery site was still healing and was still a bit sore. Nevertheless, I decided to see if I could go climbing again. I took it easy the first time and just did very low-effort stuff. The next time I felt better, so I stepped things up a bit, but I noticed that my left groin area was feeling a little sore. I couldn't tell if there was any weird swelling there or not, but I wasn't sure if it was from climbing or something else. It was starting to freak me out a bit, to the point where I kept trying to feel for lumps there. I was scheduled for a CT scan that Monday (Mar. 2) of my chest, abdomen, and pelvis, but I wasn't going to see the doctor until the following Monday. I decided that I wanted to get this thing checked out, so I scheduled an appointment for Wednesday. Luckily, it turned out to be nothing that anyone could feel. My guess is I just strained the muscle a little.
More Paranoia
The follow-up scan turned out to be clear - the pelvis area is clear, the other nodule in the left side is no longer there (actually just barely visible, but it hasn't changed, which is the good part). The right nodules are holding steady at miniscule and minisculer. The pathology from the nodule they removed was no good - same malignancy as before - but they were able to remove the whole thing with good margins. Right now we're in a bit of a holding pattern as we wait to see what happens (or better yet, what doesn't happen). I'm trying to set up an appointment with a doctor in NY to see what other treatment options I might have, but right now treating it without knowing what's there doesn't make a whole lot of sense.
I was feeling great about the clear scans, but then I guess someone somewhere decided a break was not entirely in order. The following Sunday I noticed another lump, this time in the right groin area. The weird thing is that it seemed like it would go away when I lay down to sleep at night. It didn't quite feel like the previous lumps I've had, but I was nevertheless freaked out. I went back to my doctor that week and we determined that it was probably a hernia - normally, this would be a huge drag and annoyance, but at this point, anything that's not cancer is a huge relief. We scheduled an ultrasound for later that day, just to get it checked out and make sure. The radiologist confirmed that it was probably just a mild hernia and I should "just ignore it." Right. Anyway, it's not too bothersome, and I was able to go on my next trip to Hawaii (Mar. 12-17) with no problems. Lots of swimming, snorkeling, hiking, and an attempt at surfing. More on this in the next post. . .
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