Karen had an appointment with the urologist the day after Thanksgiving. They did a urodynamic test, which is where you urinate into a special toilet and it measures things like flow rate and volume. Then they follow up with a bladder scan to check if there's any residual urine in your bladder. During the test her flow was weak, and there was a very small amount of retention. Retention had been a consistent issue during her initial stay at Mayo. The general consensus was that as the body healed and the swelling from the surgery went down, things would continue to improve. But bladder issues have been slowly returning.
So today the urologists did a cystoscopy to look for other problems. However, everything seems to be good. It's possible there's still nerve damage from when they removed cancer in the area. Neuropathy can also affect the bladder, so it could be a combination of the two. It's likely this is still something that will work itself out. Either way, they've given Karen some medication that works on the smooth muscle tissue of the bladder, which should help alleviate the problem.
Karen had some more blood work before the procedure, which, unfortunately, showed a slight all around decline from her previous results. Nothing significant or worrisome enough to hold her back from today's procedure or warrant a blood transfer, but we're interested in what the oncologist would say about it. The neuropathy seems to still be getting worse, so maybe it's connected to that. That said, she's getting better at walking on numb feet. Which might sound like a positive development, but being on her feet longer makes them hurt that much more. The gabepentin they gave her to control the neuropathy induced pain can make you sleepy and dizzy; so she's taken about two weeks to work up to the full dosage. It's not really working yet, but if it's still not working in a week or two, there's a higher dosage we can try before trying something different.
Wednesday, May 14, 2014
Wednesday, May 7, 2014
Finished with Chemo
So last week Karen had more blood work done to see if she was ready for more chemo. The blood work done her last day at the hospital showed improvement over previous days, but the numbers were still lower than the day she had come in. The latest numbers continued to show improvement, but once again, they are still lower than that first day at the hospital.
The oncologist said that it's good we're still seeing improvement, but at this point it had been 4 weeks since her last chemotherapy session, so there should have been a much larger improvement than we were seeing. He said her body is still trying to tell us it's had enough, and that stopping chemotherapy now, after 10 sessions, is probably best. Karen, being in a hurry to finish up chemotherapy and put it behind her, came ready to argue for finishing her last two treatments now opposed to a month from now, as had been hinted at in the hospital. But this was a total surprise to us. Neither of us could say anything.
During our previous chemotherapy session, a woman at the station down from us had just completed her last chemotherapy session. The staff walked over in a long line and gathered around. As they were approaching I kept waiting for them to break into a clapping rhythm and start singing happy birthday, but instead someone just said congratulations and they all starting clapping. What a good feeling that must be.
After a bit of silence he realized he caught us by surprise. We were simultaneously happy to be done with the tortures of chemotherapy, and yet concerned about what it meant in the long run. Before either of us could put this into words he jumped back in. If we felt strongly about continuing he could reduce the chemo down from half the dosage to a quarter, but thought it wouldn't be much of benefit. Karen got out a weak "I'm fine stopping now," followed by a nervous giggle. More silence.
He responded to what the silence told him, rather than words Karen spoke. He reiterated that she's done 10 out of the 12 chemotherapy sessions, 8 with the oxaliplatin. And stated most of the benefit comes from the initial treatments. He said there are even trials happening right now testing the effectiveness of giving just 6 rounds of chemotherapy for colon cancer patients. He said that for it to be brought to trials, enough people must feel there's at least some reason to believe that even just 6 treatments are enough. Karen spoke more confidently this time, "Ok. Well I'm fine being done."
When we asked about the specific cause of Karen's low blood cell counts he said that in the CAT scans he can see her spleen has enlarged quite a bit, which is a common side effect of oxaliplatin. He says that's where all the platelets are going and that along with the bone marrow suppression of the oxaliplatin is likely the key cause of the low numbers we're seeing. All the more reason to give the body time to recover.
As predicted, Karen's neuropathy is still getting worse. Her fingers are still tingly, and the tingling has spread throughout the rest of her hands. As it is, they've been hurting when she uses them for more than 2 to 5 minutes, making things like puzzles and typing painful after only a short time. The neuropathy has started to spread out from her hands. She describes it as feeling like an electric shock traveling up her arm. And the neuropathy covers enough of her feet that it's become difficult to walk for more than a few minutes without worrying about stumbling. Rather than hurt, her feet seem to simply go numb when using them. Her cold sensitivity had all but vanished before returning in a new form. This time it's a sensitivity to temperatures in general, both hot and cold hurt badly, but just on her hands and feet - pretty much anywhere the neuropathy is, so we assume this is caused directly by the neuropathy itself, rather than the oxaliplatin. The doctor gave Karen a prescription for gabapentin to help with the pain from the neuropathy.
All in all, we left feeling pretty happy with where things were. There's still that nagging feeling in the back of our mind from time to time, but we've managed to stay pretty positive about the whole thing. Rather than saying she had to quit the chemotherapy early, we've been saying she finished it early. I'm fairly confident this will turn out to have been the right decision.
The oncologist said that it's good we're still seeing improvement, but at this point it had been 4 weeks since her last chemotherapy session, so there should have been a much larger improvement than we were seeing. He said her body is still trying to tell us it's had enough, and that stopping chemotherapy now, after 10 sessions, is probably best. Karen, being in a hurry to finish up chemotherapy and put it behind her, came ready to argue for finishing her last two treatments now opposed to a month from now, as had been hinted at in the hospital. But this was a total surprise to us. Neither of us could say anything.
During our previous chemotherapy session, a woman at the station down from us had just completed her last chemotherapy session. The staff walked over in a long line and gathered around. As they were approaching I kept waiting for them to break into a clapping rhythm and start singing happy birthday, but instead someone just said congratulations and they all starting clapping. What a good feeling that must be.
After a bit of silence he realized he caught us by surprise. We were simultaneously happy to be done with the tortures of chemotherapy, and yet concerned about what it meant in the long run. Before either of us could put this into words he jumped back in. If we felt strongly about continuing he could reduce the chemo down from half the dosage to a quarter, but thought it wouldn't be much of benefit. Karen got out a weak "I'm fine stopping now," followed by a nervous giggle. More silence.
He responded to what the silence told him, rather than words Karen spoke. He reiterated that she's done 10 out of the 12 chemotherapy sessions, 8 with the oxaliplatin. And stated most of the benefit comes from the initial treatments. He said there are even trials happening right now testing the effectiveness of giving just 6 rounds of chemotherapy for colon cancer patients. He said that for it to be brought to trials, enough people must feel there's at least some reason to believe that even just 6 treatments are enough. Karen spoke more confidently this time, "Ok. Well I'm fine being done."
When we asked about the specific cause of Karen's low blood cell counts he said that in the CAT scans he can see her spleen has enlarged quite a bit, which is a common side effect of oxaliplatin. He says that's where all the platelets are going and that along with the bone marrow suppression of the oxaliplatin is likely the key cause of the low numbers we're seeing. All the more reason to give the body time to recover.
As predicted, Karen's neuropathy is still getting worse. Her fingers are still tingly, and the tingling has spread throughout the rest of her hands. As it is, they've been hurting when she uses them for more than 2 to 5 minutes, making things like puzzles and typing painful after only a short time. The neuropathy has started to spread out from her hands. She describes it as feeling like an electric shock traveling up her arm. And the neuropathy covers enough of her feet that it's become difficult to walk for more than a few minutes without worrying about stumbling. Rather than hurt, her feet seem to simply go numb when using them. Her cold sensitivity had all but vanished before returning in a new form. This time it's a sensitivity to temperatures in general, both hot and cold hurt badly, but just on her hands and feet - pretty much anywhere the neuropathy is, so we assume this is caused directly by the neuropathy itself, rather than the oxaliplatin. The doctor gave Karen a prescription for gabapentin to help with the pain from the neuropathy.
All in all, we left feeling pretty happy with where things were. There's still that nagging feeling in the back of our mind from time to time, but we've managed to stay pretty positive about the whole thing. Rather than saying she had to quit the chemotherapy early, we've been saying she finished it early. I'm fairly confident this will turn out to have been the right decision.
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