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!
2 comments:
Mark... I went to Facebook to wish you a Happy, Happy and learn you are in Texas. I read your latest post and am so grateful for you as my friend . I am one of thoz people that think you look handsome with long locks OR a shaved head... OF COURSE!! Well Happy birthday, my friend! You continue to be strong and stare thoz spots, clots, and clogs down - how DARE this happen RIGHT Now! Love you so so much... Do you want me to go ahead and have your birthday party with Einstein and Trouble on Saturday?? Did Sheila leave notes where I can find the paints and her recipes??? :-) ilu g
Hey Mark, I woke up this morning to your blog. For some silly reason I thought you were in TX for your birthday. I will be thinking of you, and logging on daily for updates. Grandee is right by asking "how dare this happen to you?" (again) Well it;s Dec and along with you, I also have a birthday this month.. Woo Hoo I'll cath up to you later today. Xoxoxoxo
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