(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.
Sunday, August 30, 2009
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!
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