Friday, August 19, 2011
Monday, July 25, 2011
Crazy infection will not stop
But we are gettiing more info with a CT scan and they will tweak the plan based on what they find and all the other tests. If they poke a hole where one shouldn't be, well, I'm just happy to have made it this far. Love you Sheila! And love to anyone out there reading this. No fear.
Tuesday, July 19, 2011
Perforated Bowel
So, I have a LOT to catch up on (sorry folks), but I have to relate the latest that took place over the 4th of July weekend. So that Friday, I get a PET scan. We had been doing chemo and it was about time to take a look. So we did the normal procedure with little fanfare and I go home.
As is NOT her typical behavior, Sheila decided to NOT monitor the results. She just wants to have a normal 4th of July weekend like any other wife. If there was a problem, the docs would contact us. We expected nothing too dramatic and thought we'd review the scan Monday morning.
So, on Sunday morning, we are getting ready to go to brunch with the family. We're all dressed and about to hop into the car, but we have a couple minutes down time before actually hopping. So, I decide to check my voice mail on my cell. "Mr. Scarbrough, we have some serious results about your PET scan. Please call us immediately at this number". Shit! What's going on. I call the number and of course, because it's the weekend I get the answering service whom are next to useless. Sheila jumps into action and logs on. She checks the result. It appears that I have a potential bowel perforation. Damn. This is horrible news, but it is somewhat dulled by the fact that I feel just fine. Have been eating & drinking for the last 2 days without an issue. Hmmmm. So we have a number of problems here.
#1). How the hell did we end up with a "5 alarm" problem and a "1 alarm" response (message on voice mail.) Both Sheila and I were pretty livid about that. But the more important issue was:
#2). Do I have a bowel perforation or not?
I was afraid. We've talked in the past about how people eventually die with bowel cancer and the sentence usually goes like "Well he got a bowel perforation and then..." without the dead part being said. I was really scared.
Sheila jumps into action and makes some phone calls. Apparently some of the guys there had heard about my result and were open to the idea of my coming in to verify it. Hell yes, let's verify it. So we scuttle the brunch plans and head to the hospital. Again.
I'm telling folks now that I'm a professional patient, I've been in there so much. But back the the hospital. I arrive and everyone is amazed that a "bowel perf" patient looks so good. Thank you very much. They wheel me down to X-Ray and do a series of scans (both standing and prone) and then wheel me back up. Right now I'm NPO since IF there is a bowel perf, something will need to be done about it. Not to long after that, the doc comes back with the results. It appears that there is NOT an obvious bowel perf that needs immediate treatment. Yay, yay, yay. Now that we know it's not a full-blown bowel perf (pun intended), what the heck is it??? Theories get bounced back & forth (medicine is not an exact science) and we decide that perhaps this was a small bowel perf that spewed a very small amount of materiel before healing itself. Yeah, it sounds whack but it was the best we could think of. This might explain the recurrent infection I had been having and perhaps, based on the location, it might also explain the sciatic nerve pain I had been experiencing the last month. Well, well. Maybe it does make sense. Or not. Anyway, that's what we're going with now. Treat infection with antibiotics until gone, treat pain as needed and hope that the "bowel perf" never comes back.
Wednesday, December 22, 2010
Stent Internalized
The Monday after we got back to Charleston, we had an appointment with our IR (Interventional Radiology) doc for another stent swap. We chatted about removing the nephrostomy tube and he agreed that it was a reasonable plan.
For those of you just now tuning in, I have what seems to be a somewhat "mushy" tumor in my ureter (where it connects with my ileal conduit). Doctors have placed a "double J" stent that goes between my kidney and ileal conduit so the tumor doesn't block any urine flow. The "J" is where the stent makes a little curlie-q (with holes) for the fluid to enter/exit. To "get" to the stent and to provide a "backup path" in case it should get clogged, there's an extra tube that goes from the kidney out my back to a connector (which is normally plugged shut unless we need it). This is the nephrostomy tube. If the ureter became completely blocked, we'd use this for drainage.
The stents have been working fine for several months, and the nephrostomy tube adds some additional chances for infection (and it's a hassle! Cleaning every other day and poking you in the ribs when you roll over sleeping) so our docs said it's time for it to go. We agree!
So Monday, our IR doc does the swap but this time without the nephrostomy tube (the stent is still in but all "internalized" now). For the next swap they will have to go in through "the front" (through my urostomy/stoma). This is one instance where my new plumbing is making things easier. Going through the weenie would NOT be fun. Everything went according to plan, my good friend nurse Joy provided a lovely level of sedation and I no longer have a tube hanging out of my back. Yay!
A few days later (Sat. Dec 18th) I woke up with a temp of 101.6. Looks like an infection. This has happend before and we had a pretty good idea that it was a UTI. With the ileal conduit, UTIs are pretty common and they had just been in there last week. We called the doc on call at the hospital and he prescribed some antibiotics (good ol' Cipro). They kicked in pretty quickly and the next day I was already feeling better. It will just have to be one of those things that we keep an eye on.
Feeling pretty good on the plan for keeping my plumbing in order. Things could change, but the internal stents are working pretty good for now.
For the cancer, we're still waiting to hear the exact plan from our Texas docs. We'll ping them in a few days to see what's up. Hopefully it won't be too yucky, but chances are it will be :) Until then, however, I'm planing on having a fun chemo-free holiday. You too!!
For those of you just now tuning in, I have what seems to be a somewhat "mushy" tumor in my ureter (where it connects with my ileal conduit). Doctors have placed a "double J" stent that goes between my kidney and ileal conduit so the tumor doesn't block any urine flow. The "J" is where the stent makes a little curlie-q (with holes) for the fluid to enter/exit. To "get" to the stent and to provide a "backup path" in case it should get clogged, there's an extra tube that goes from the kidney out my back to a connector (which is normally plugged shut unless we need it). This is the nephrostomy tube. If the ureter became completely blocked, we'd use this for drainage.
The stents have been working fine for several months, and the nephrostomy tube adds some additional chances for infection (and it's a hassle! Cleaning every other day and poking you in the ribs when you roll over sleeping) so our docs said it's time for it to go. We agree!
So Monday, our IR doc does the swap but this time without the nephrostomy tube (the stent is still in but all "internalized" now). For the next swap they will have to go in through "the front" (through my urostomy/stoma). This is one instance where my new plumbing is making things easier. Going through the weenie would NOT be fun. Everything went according to plan, my good friend nurse Joy provided a lovely level of sedation and I no longer have a tube hanging out of my back. Yay!
A few days later (Sat. Dec 18th) I woke up with a temp of 101.6. Looks like an infection. This has happend before and we had a pretty good idea that it was a UTI. With the ileal conduit, UTIs are pretty common and they had just been in there last week. We called the doc on call at the hospital and he prescribed some antibiotics (good ol' Cipro). They kicked in pretty quickly and the next day I was already feeling better. It will just have to be one of those things that we keep an eye on.
Feeling pretty good on the plan for keeping my plumbing in order. Things could change, but the internal stents are working pretty good for now.
For the cancer, we're still waiting to hear the exact plan from our Texas docs. We'll ping them in a few days to see what's up. Hopefully it won't be too yucky, but chances are it will be :) Until then, however, I'm planing on having a fun chemo-free holiday. You too!!
Wednesday, December 8, 2010
The Plan (version 42.b)
Had a CT scan yesterday. Along with scanning the lungs they did a special version that took a close look at my urologcal system. Special barium drink, extra IV fluids & special timing on the scans. Had a fair amount of contrast but drank LOTS of fluids afterwards to flush everything out.
Today we met with our two main docs, my primary oncologist and main urologist (that was involved in my surgery last year). The CT scan basically confirmed what we already knew. Cancer has spread to a few small spots on my lungs and is trying to block my ureters. Our main oncologist basically suggested that the best way to move forward is with a "systematic" approach (which means that since the cancer is in multiple places, chemo is the best course of action). Sounds reasonable. He's going to take one of my existing cancer samples (from last year) and do some genetic testing on it to see if there is a particular chemo that might be more effective than the "standard" chemo used. Finally, we're starting to see "customized" care for cancer treatment. Not sure what he'll come up with, but this IS the future of cancer care.
Our urologist was very hesitantant to recommend surgery and agreed that the best thing for my ureter was to continue to keep it open with a stent and see if the chemo helped. The stent is sort of a "band aid" solution, but it will work and will be MUCH less invasive than a surgical (or "stainless steel" approach as our other doctor calls it) procedure. We can use a different kind of stent that will be all internal, so the hassle-factor will be reduced too. Sounds good to me.
So the bottom line is nothing super-radical, but we can "kick the can down the road" for another 6-12 months and then see what happens. Depending on the chemo that we go with, it might produce some significant results (stay tuned). Eventually we're hoping for some SMC (Super Magic Chemo) that will kill this stuff once and for all, but until then, this should keep us going.
All in all, we have our Texas docs back in the loop and have a pretty reasonable plan. It involves some chemo (which may not be all that much fun), but should give us some "mileage" on down the road.
Looking foward to heading home tomorrow...
Today we met with our two main docs, my primary oncologist and main urologist (that was involved in my surgery last year). The CT scan basically confirmed what we already knew. Cancer has spread to a few small spots on my lungs and is trying to block my ureters. Our main oncologist basically suggested that the best way to move forward is with a "systematic" approach (which means that since the cancer is in multiple places, chemo is the best course of action). Sounds reasonable. He's going to take one of my existing cancer samples (from last year) and do some genetic testing on it to see if there is a particular chemo that might be more effective than the "standard" chemo used. Finally, we're starting to see "customized" care for cancer treatment. Not sure what he'll come up with, but this IS the future of cancer care.
Our urologist was very hesitantant to recommend surgery and agreed that the best thing for my ureter was to continue to keep it open with a stent and see if the chemo helped. The stent is sort of a "band aid" solution, but it will work and will be MUCH less invasive than a surgical (or "stainless steel" approach as our other doctor calls it) procedure. We can use a different kind of stent that will be all internal, so the hassle-factor will be reduced too. Sounds good to me.
So the bottom line is nothing super-radical, but we can "kick the can down the road" for another 6-12 months and then see what happens. Depending on the chemo that we go with, it might produce some significant results (stay tuned). Eventually we're hoping for some SMC (Super Magic Chemo) that will kill this stuff once and for all, but until then, this should keep us going.
All in all, we have our Texas docs back in the loop and have a pretty reasonable plan. It involves some chemo (which may not be all that much fun), but should give us some "mileage" on down the road.
Looking foward to heading home tomorrow...
Monday, December 6, 2010
Back in Texas
We're baaaaaaaaack!
(Jack Bauer "24" voice): Previously on Mark's body
So we did our big surgery last year (Aug. 2009) and it was a big deal. Recovery was significant with new plumbing and a chopped up leg... Hopes were cautiously high that, perhaps, this could give us some pretty good mileage towards a recovery.
So we were pretty heartbroken that in March 2010 (14th to be exact) my CEA started its upwards climb once more. "You have cancer" again. It was still too low to really do anything about it, but we knew that we'd be doing "something" in the coming months.
So in June or so, we were doing a CT scan to see if we could find out where the cancer was "hiding" and the docs noticed that my right kidney wasn't draining properly. No cancer was obvious (yet) but the right ureter was getting clogged up. Lovely. Just what we need on top of all the cancer stuff...
So it's time for some new tests! First we did a "loopogram" where they try to see what the "flow" is from the outside in. So they get you on the table (no sedation needed for this one) and squirt some contrast into my urostomy stoma while I'm under a low-level x-ray. The liquid went up the left side, but the right side, not so much. This confirmed what we saw on the CT.
A couple days later, we did a nephrostogram where they inject you with radioactive stuff and follow the "flow" from the inside out. No sedation necessary for this one either. You get injected and basically lay on a table for an hour or two while sensors see what's going on. If it's not moving as quickly as they want, you get some Lasix to move things along. The results again confirmed that there was a pretty significant blockage (not 100% but getting close).
So the fix for a blockage in your ureter is to put a plastic stent in. This procedure does require "moderate sedation" and they poke a small hole in your back, and thread the tube through that into the kidney and then continue through the ureter. You feel a little sore for a couple days and there's a significant risk of infection. Also the stent needs to be replaced every 4-6 weeks, so for me, they left in the back-tube to provide easier access for the next time. So now, along with my existing "extras" from the surgery last year, I have a small tube taped to my back. It's a hassle, but at least it's saving the kidney!
Meanwhile, back on the cancer front, it was time to start another round of chemo! Yay! In July we started Irinotecan & Xeloda. Irinotecan makes my hair fall out. After the second go round (4 or so weeks after starting) my hair starting coming off in the shower pretty significantly. I didn't want to have that classic stringy/thin/patchy chemo-hair look, so I shaved it all off. Bald again (just like in early 2009). It was really just getting to the point where it was starting to get kind've long. Oh well. People tell me they think it looks good and whether it's the truth or just trying to make me feel better, it does (make me feel better).
So the Irinotecan/Xeloda treatment isn't that much fun. Hair loss isn't a big deal for me, but the nausea and the hit on your immune system is significant even with all the anti-nausea drugs (that DO help, but not 100%). After one of my stent swaps, I developed a UTI. Since I was now "immue-compromised" (with a pretty low white blood cell count) it was important that we "nip it in the bud" so it didn't get out of control. Infections while on chemo can be very serious (and even kill you!) We went to the emergency room and they hooked us up with some antibiotics that started working pretty quickly. I didn't have to spend the night in the hospital, but it was a close call. Since then, I've gotten another UTI and some quick response with antibiotics worked again.
So we we're in the groove with our monthly stent swaps, but we still didn't know exactly why the ureter was getting blocked in the first place. The top two candidates were cancer (of course) or possibly some scar tissue forming there from the surgery (which is a relatively common side effect). We were hoping for the later. We did a PET scan and that didn't show any significant cancer anywhere. That was sorta good news. Good because if there was cancer, it was too small to be detected. Not so good, because we knew there was cancer there (CEA had been rising) and we couldn't find it!
On the last stent swap in October, our Interventional Radiology doctor did a "brush biopsy" in the ureter to see if he could detect any cancer there which may have been causing the blockage. The test came back positive for cancer. Not the best news, but at least now we knew what we were dealing with. At about the same time we did another CT scan, and this one showed a spot in the liver that (after a biopsy) turned out to be cancer. The scan also showed some "spots" on my lungs that are also most likely cancer. So at this point, it looks like the cancer has spread to my kidney ureter, my liver and my lungs.
Around this time, my CEA was coming down from the chemo (yay) but it was also hurting me significantly (UTI and continuing weakness), so we decided to give my body a rest and stop the chemo for now. Even though we knew there was more cancer out there, the current chemo wasn't containing it all. Time for another plan.
The easiest to deal with was the liver. It was just one, small little spot. Rather than do surgery (and risk all the normal surgery complications) we decided to do RFA or "Radio Frequency Ablation". They stick in a needle in your side, poke it into the liver, run you through a quickie CT scan to check placement and when the probe is exactly where the tumor is, they activate a transmitter on the tip and literally fry your liver from the inside out. Ouch! Fortunately we did do full on anethesia for this one. They cook the tumor and "margins" and they remove the probe. Side effects are relatively minor. I was pretty sore for a day or two and you get "flu-ish" symptoms for a couple days as your body attempts to deal with the dead meatball in your liver. Compared to surgery, it seemed like 95% of the good effects with about 5% of the hassle. Pretty good "bang for the buck". We did the RFA procedure in November. At least we took care of 1/3 of my cancer!
Now we still have the clogged ureter (with cancer) and the spots on my lungs. This is why we are now in Texas. We're doing another loopogram and CT scan tomorrow and then talking with the doctors Wednesday. Hopefully they will come up with a plan!
(Jack Bauer "24" voice): Previously on Mark's body
So we did our big surgery last year (Aug. 2009) and it was a big deal. Recovery was significant with new plumbing and a chopped up leg... Hopes were cautiously high that, perhaps, this could give us some pretty good mileage towards a recovery.
So we were pretty heartbroken that in March 2010 (14th to be exact) my CEA started its upwards climb once more. "You have cancer" again. It was still too low to really do anything about it, but we knew that we'd be doing "something" in the coming months.
So in June or so, we were doing a CT scan to see if we could find out where the cancer was "hiding" and the docs noticed that my right kidney wasn't draining properly. No cancer was obvious (yet) but the right ureter was getting clogged up. Lovely. Just what we need on top of all the cancer stuff...
So it's time for some new tests! First we did a "loopogram" where they try to see what the "flow" is from the outside in. So they get you on the table (no sedation needed for this one) and squirt some contrast into my urostomy stoma while I'm under a low-level x-ray. The liquid went up the left side, but the right side, not so much. This confirmed what we saw on the CT.
A couple days later, we did a nephrostogram where they inject you with radioactive stuff and follow the "flow" from the inside out. No sedation necessary for this one either. You get injected and basically lay on a table for an hour or two while sensors see what's going on. If it's not moving as quickly as they want, you get some Lasix to move things along. The results again confirmed that there was a pretty significant blockage (not 100% but getting close).
So the fix for a blockage in your ureter is to put a plastic stent in. This procedure does require "moderate sedation" and they poke a small hole in your back, and thread the tube through that into the kidney and then continue through the ureter. You feel a little sore for a couple days and there's a significant risk of infection. Also the stent needs to be replaced every 4-6 weeks, so for me, they left in the back-tube to provide easier access for the next time. So now, along with my existing "extras" from the surgery last year, I have a small tube taped to my back. It's a hassle, but at least it's saving the kidney!
Meanwhile, back on the cancer front, it was time to start another round of chemo! Yay! In July we started Irinotecan & Xeloda. Irinotecan makes my hair fall out. After the second go round (4 or so weeks after starting) my hair starting coming off in the shower pretty significantly. I didn't want to have that classic stringy/thin/patchy chemo-hair look, so I shaved it all off. Bald again (just like in early 2009). It was really just getting to the point where it was starting to get kind've long. Oh well. People tell me they think it looks good and whether it's the truth or just trying to make me feel better, it does (make me feel better).
So the Irinotecan/Xeloda treatment isn't that much fun. Hair loss isn't a big deal for me, but the nausea and the hit on your immune system is significant even with all the anti-nausea drugs (that DO help, but not 100%). After one of my stent swaps, I developed a UTI. Since I was now "immue-compromised" (with a pretty low white blood cell count) it was important that we "nip it in the bud" so it didn't get out of control. Infections while on chemo can be very serious (and even kill you!) We went to the emergency room and they hooked us up with some antibiotics that started working pretty quickly. I didn't have to spend the night in the hospital, but it was a close call. Since then, I've gotten another UTI and some quick response with antibiotics worked again.
So we we're in the groove with our monthly stent swaps, but we still didn't know exactly why the ureter was getting blocked in the first place. The top two candidates were cancer (of course) or possibly some scar tissue forming there from the surgery (which is a relatively common side effect). We were hoping for the later. We did a PET scan and that didn't show any significant cancer anywhere. That was sorta good news. Good because if there was cancer, it was too small to be detected. Not so good, because we knew there was cancer there (CEA had been rising) and we couldn't find it!
On the last stent swap in October, our Interventional Radiology doctor did a "brush biopsy" in the ureter to see if he could detect any cancer there which may have been causing the blockage. The test came back positive for cancer. Not the best news, but at least now we knew what we were dealing with. At about the same time we did another CT scan, and this one showed a spot in the liver that (after a biopsy) turned out to be cancer. The scan also showed some "spots" on my lungs that are also most likely cancer. So at this point, it looks like the cancer has spread to my kidney ureter, my liver and my lungs.
Around this time, my CEA was coming down from the chemo (yay) but it was also hurting me significantly (UTI and continuing weakness), so we decided to give my body a rest and stop the chemo for now. Even though we knew there was more cancer out there, the current chemo wasn't containing it all. Time for another plan.
The easiest to deal with was the liver. It was just one, small little spot. Rather than do surgery (and risk all the normal surgery complications) we decided to do RFA or "Radio Frequency Ablation". They stick in a needle in your side, poke it into the liver, run you through a quickie CT scan to check placement and when the probe is exactly where the tumor is, they activate a transmitter on the tip and literally fry your liver from the inside out. Ouch! Fortunately we did do full on anethesia for this one. They cook the tumor and "margins" and they remove the probe. Side effects are relatively minor. I was pretty sore for a day or two and you get "flu-ish" symptoms for a couple days as your body attempts to deal with the dead meatball in your liver. Compared to surgery, it seemed like 95% of the good effects with about 5% of the hassle. Pretty good "bang for the buck". We did the RFA procedure in November. At least we took care of 1/3 of my cancer!
Now we still have the clogged ureter (with cancer) and the spots on my lungs. This is why we are now in Texas. We're doing another loopogram and CT scan tomorrow and then talking with the doctors Wednesday. Hopefully they will come up with a plan!
Friday, December 11, 2009
Recovery
It's been about 3 and a half months since the surgery. So far things
are going pretty good. I'm doing physical therapy for my leg 3 times a
week (highly recommended) and I even signed up for a 5 week "adventure
challange". This week we did rock climbing (I got to the top of the
tower twice! - even with my weak leg) and (today) swimming. I did about
20 minutes of laps and my knee felt pretty good afterwards.
are going pretty good. I'm doing physical therapy for my leg 3 times a
week (highly recommended) and I even signed up for a 5 week "adventure
challange". This week we did rock climbing (I got to the top of the
tower twice! - even with my weak leg) and (today) swimming. I did about
20 minutes of laps and my knee felt pretty good afterwards.
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