(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. . .
Thursday, September 17, 2009
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. . .
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