It's been a year now since Karen had her big surgery, so it was time for another follow up visit with the doctor that performed the operation. It was actually a very short visit. He thought everything was going well and was happy to see Karen had put some weight on since he last saw her.
During the exam, he felt the scar tissue that was left behind from the laparoscopic surgery Karen had before we knew it was cancer - pre Mayo. The surgery that started it all was a cyst removal surgery at Banner Good Samaritan. The doctor doing the surgery didn't realize it was actually cancer and cut up the tumor and pulled it out through the small incisions made for the laparoscopic surgery. After the pathology report showed cancer, one concern was if any cancerous implants had been left at the location of the incisions where the tumor was pulled through the body piecemeal.
The big surgery Karen had at Mayo healed rather cleanly. You can still see a scar, but it's mostly superficial. And while the scars from the laparoscopic surgery are hard to see, the surgery had left large nodules of scar tissue under the skin. Karen had remarked that she'd rather have the scar on the outside then all that scar tissue inside. The lumps had begun to bother her more lately, to the point where it was hurting, and was now something we planned on asking the doctor about. He brought it up on his own.
He believes this scar tissue may be something more. It seems to have grown a small amount since our last visit with him, and he says when you're in a situation like Karen's, it's better to error on the side of caution. To make sure it's only scar tissue he wants to do a quick outpatient surgery. Make a couple incision, remove the nodules, and send them off to pathology. One side effect of this surgery will likely be the lessening of the pain she's been feeling in those areas.
Although it's not particularly urgent, he sees no reason to delay, and has scheduled the surgery for tomorrow at noon. Karen can even eat breakfast in the morning, provided it's something soft like eggs and not something harder to digest like oatmeal. This is all a bit fast, but the possibility of cancer is already weighing on Karen and this gives her less time to worry about it. I think we're both happy to have such a quick turn around.
I'll post again tomorrow after the surgery, but since it's midday and other surgeries may run over, Karen's surgery might get pushed back later into the day, but it should be a quick surgery nonetheless.
Wednesday, October 1, 2014
Friday, August 29, 2014
Another CT Scan
It's that time again. It's been roughly 3 months since Karen's last CT scan. Eventually we'll move to once every 6 months, but for now it's still every 3. When talking to other cancer survivors one thing we hear a lot of is how stressful it can be waiting for the results of the CT scan. Recently someone was saying that those 2 to 3 days between the scan and followup visit with the oncologist "were the worst." I guess it's lucky for us that it all happens in one day at Mayo Clinic. Especially since Karen has been feeling "off" and fatigued this past week or so, and had admitted to me she was worried that it could be cancer related.
We start our day by visiting the infusion ward. This is where Karen received her chemotherapy - they access patients' ports every day, and are the best at it. I found a short video on YouTube of someone having their port accessed. There's a lot involved before you get to this point - masking, gloving up, and cleaning the area - but this is the short of it. After Karen has her port accessed, blood is drawn for labs. Then we're off to the radiology department, which is two floors down and just a short walk away. They give her flavored barium sulfate to drink; this time the flavor was "orange cream." (She didn't seem impressed.) This makes your intestines show up much more clearly in the CT scan. She drinks this slowly over a 60 minute period and when time's up they put contrast into her port, and then do the CT scan.
It's about 10:30am at this point and we're off to a physical therapy appointment scheduled for 11. PT lasts roughly an hour, so it's a little past noon when Karen's done. We grab some food before heading over to the oncology department. There was enough time between everything that we didn't feel rushed, but there wasn't enough time to think or worry about the results. We can look at the results of the blood lab work on the website or through their mobile app, which we've done before while waiting, but we just took our time and enjoyed lunch. The appointment with the oncologist was at 2pm. We got there 10 minutes early and were ushered off into a waiting room.
The CT results were stable. This is what we want to hear. There are "nodules" that can be seen in the CT scan, and while some of them most certainly scar tissue, we are checking to make sure none of them are growing and that nothing new is growing. If we see any growth, then that's most likely cancer. The results of the blood work still put Karen in the "low" range in many areas - white blood cell count, platelets, hemoglobin, etc - but we are finally seeing improvements across the board. So that's great news as well. Karen expressed her concern over her sudden increase in fatigue. The doctor seems to suspect it's just a bug she's fighting, and thinks it will likely pass on it's own, but said to let him know if it persists or gets worse. Karen asked if a bone density scan would be a good idea, and the doctor agreed. If nothing else it would be good to have a reference point for checking bone loss in the future. He filled out some disability maintenance paperwork we brought, and we were done.
For the first time in a long time there have been no changes to Karen's medication. The new drug he gave her for the pain in her hands on our last visit, amitriptyline, seems to be working. The neuropathy is still there, but the pins and needles pain is gone, and with it, the last of her hot and cold sensitivity. With the exception of this latest bout of fatigue, everything seems to be moving in the right direction.
We start our day by visiting the infusion ward. This is where Karen received her chemotherapy - they access patients' ports every day, and are the best at it. I found a short video on YouTube of someone having their port accessed. There's a lot involved before you get to this point - masking, gloving up, and cleaning the area - but this is the short of it. After Karen has her port accessed, blood is drawn for labs. Then we're off to the radiology department, which is two floors down and just a short walk away. They give her flavored barium sulfate to drink; this time the flavor was "orange cream." (She didn't seem impressed.) This makes your intestines show up much more clearly in the CT scan. She drinks this slowly over a 60 minute period and when time's up they put contrast into her port, and then do the CT scan.
It's about 10:30am at this point and we're off to a physical therapy appointment scheduled for 11. PT lasts roughly an hour, so it's a little past noon when Karen's done. We grab some food before heading over to the oncology department. There was enough time between everything that we didn't feel rushed, but there wasn't enough time to think or worry about the results. We can look at the results of the blood lab work on the website or through their mobile app, which we've done before while waiting, but we just took our time and enjoyed lunch. The appointment with the oncologist was at 2pm. We got there 10 minutes early and were ushered off into a waiting room.
The CT results were stable. This is what we want to hear. There are "nodules" that can be seen in the CT scan, and while some of them most certainly scar tissue, we are checking to make sure none of them are growing and that nothing new is growing. If we see any growth, then that's most likely cancer. The results of the blood work still put Karen in the "low" range in many areas - white blood cell count, platelets, hemoglobin, etc - but we are finally seeing improvements across the board. So that's great news as well. Karen expressed her concern over her sudden increase in fatigue. The doctor seems to suspect it's just a bug she's fighting, and thinks it will likely pass on it's own, but said to let him know if it persists or gets worse. Karen asked if a bone density scan would be a good idea, and the doctor agreed. If nothing else it would be good to have a reference point for checking bone loss in the future. He filled out some disability maintenance paperwork we brought, and we were done.
For the first time in a long time there have been no changes to Karen's medication. The new drug he gave her for the pain in her hands on our last visit, amitriptyline, seems to be working. The neuropathy is still there, but the pins and needles pain is gone, and with it, the last of her hot and cold sensitivity. With the exception of this latest bout of fatigue, everything seems to be moving in the right direction.
Thursday, July 17, 2014
Thyroid Nodule Biopsy
On the 11th Karen had both her ultrasound and a follow up with the oncologist. While I like talking with the techs to try and understand what it is they are seeing, and to get an impression of what they think, I'd appreciate it if they were more careful with what they say. This one was very vocal about the size of the nodule. It was roughly 2 inches across and she seemed surprised about the size. She asked scary sounding things like, have you ever had a PET scan to check for cancer? Do you ever have trouble swallowing? Afterwards, when we talked to the oncologist, he was as calm about it then as when it was first brought up. He said they're actually quite common, up to half the population has thyroid nodules. He also reiterated that these are almost always benign, and that her thyroid hormone levels were normal. However, after seeing the results of the ultrasound he wanted to make sure it wasn't something more. He suggested a thyroid biopsy, and a follow up visit with an endocrinologist - a doctor who deals with thyroids among other things - to review the results and decide if anything needed to be done. He also started Karen on a new medication, amitriptyline, to help with the burning pins and needles pain caused by her neuropathy, and signed off on her getting physical therapy to help deal with the numbness in day to day activities, such as walking.
Karen and I came away with very different impressions of the thyroid situation. To me it just seemed the doctor was being thorough. Karen, however, got the impression that he wanted the nodule out, and became worried about another surgery. She said it's not uncommon for pills to get stuck in her throat. I told her that even happens to me. She also mentioned that she chokes on food sometimes as well. I can only recall that happening a couple times in the past couple years, and it didn't seem frequent enough to be significant, but maybe it happened more than I realized. Afterwards, it seemed every pill she took got stuck in her throat. Could it be I just wasn't paying close enough attention before? Could it be some sort of self‑fulfilling prophecy where she is expecting to have trouble swallowing so she does something different and that causes trouble swallowing? In the past she's said pills can get stuck in her throat when her allergies were bad; maybe that's all it is? Perhaps a combination of things? It's hard to say.
She asked that I not tell anyone or update the blog until she knew one way or the other if it were cancer. She explained that she didn't want to worry anyone unnecessarily. The schedule we received even said "consult thyroid tumor" on the endocrinologist visit. Everyone had just been calling it a nodule. I'm not sure at what point a nodule becomes a tumor, but that small word change adds a sense of seriousness to everything going on. Karen had the biopsy on Wednesday and the follow up with the endocrinologist today. Talk about a long 24 hours.
The biopsy is done while you're awake and consists of fine needles being guided with ultrasound into the thyroid nodule to take samples. If you have the stomach for it, you can see how it's done here. The video says they use the needle 2 to 3 times, but Mayo Clinic's policy is to do it 5 times with 5 different needles. The video also says it takes 2 to 4 days for the results, but we got them in just 24 hours, when we saw the Endocrinologist. He said the pathology report showed the nodule to be benign, and once again, that this is actually quite common. He said he certainly wouldn't recommend surgery to remove the nodule unless it was interfering with day to day life, and even then he'd be hesitant at this point in her recovery. He didn't see it pressing on the windpipe but wondered if it was causing any problems swallowing. That would be the only reason to remove the nodule, and warned that you have the risk of hypothyroidism whenever you operate on the thyroid. He suggested talking with a thyroid surgeon to give us a better idea of what was involved and what to expect if the nodule has to be removed. Karen seems quite strongly against another operation, but is open to other opinions and points of view, and is willing to talk to the surgeon about the matter. The doctor suggested having regular ultrasounds to keep an eye on the thyroid since it is quite possibly bothering her. I didn't think about it at the time, but perhaps the CT scans she's already getting regularly would be sufficient.
Karen and I came away with very different impressions of the thyroid situation. To me it just seemed the doctor was being thorough. Karen, however, got the impression that he wanted the nodule out, and became worried about another surgery. She said it's not uncommon for pills to get stuck in her throat. I told her that even happens to me. She also mentioned that she chokes on food sometimes as well. I can only recall that happening a couple times in the past couple years, and it didn't seem frequent enough to be significant, but maybe it happened more than I realized. Afterwards, it seemed every pill she took got stuck in her throat. Could it be I just wasn't paying close enough attention before? Could it be some sort of self‑fulfilling prophecy where she is expecting to have trouble swallowing so she does something different and that causes trouble swallowing? In the past she's said pills can get stuck in her throat when her allergies were bad; maybe that's all it is? Perhaps a combination of things? It's hard to say.
She asked that I not tell anyone or update the blog until she knew one way or the other if it were cancer. She explained that she didn't want to worry anyone unnecessarily. The schedule we received even said "consult thyroid tumor" on the endocrinologist visit. Everyone had just been calling it a nodule. I'm not sure at what point a nodule becomes a tumor, but that small word change adds a sense of seriousness to everything going on. Karen had the biopsy on Wednesday and the follow up with the endocrinologist today. Talk about a long 24 hours.
The biopsy is done while you're awake and consists of fine needles being guided with ultrasound into the thyroid nodule to take samples. If you have the stomach for it, you can see how it's done here. The video says they use the needle 2 to 3 times, but Mayo Clinic's policy is to do it 5 times with 5 different needles. The video also says it takes 2 to 4 days for the results, but we got them in just 24 hours, when we saw the Endocrinologist. He said the pathology report showed the nodule to be benign, and once again, that this is actually quite common. He said he certainly wouldn't recommend surgery to remove the nodule unless it was interfering with day to day life, and even then he'd be hesitant at this point in her recovery. He didn't see it pressing on the windpipe but wondered if it was causing any problems swallowing. That would be the only reason to remove the nodule, and warned that you have the risk of hypothyroidism whenever you operate on the thyroid. He suggested talking with a thyroid surgeon to give us a better idea of what was involved and what to expect if the nodule has to be removed. Karen seems quite strongly against another operation, but is open to other opinions and points of view, and is willing to talk to the surgeon about the matter. The doctor suggested having regular ultrasounds to keep an eye on the thyroid since it is quite possibly bothering her. I didn't think about it at the time, but perhaps the CT scans she's already getting regularly would be sufficient.
Tuesday, June 3, 2014
Looking Good, But...
Yesterday Karen had a CAT scan along with the usual blood lab work. The big news is the CAT scan looks good. It showed no new growth, except something on the left side of her thyroid. The doctor says nodules in the thyroid are almost always benign, however, it's still something that we need to look into. He wants to do an ultrasound on her neck in six weeks to take another look at it. I'm not sure if it's for a more detailed look, to watch for blood flow using doppler, or if it's just to watch for growth since it is another 3 months till the next CAT scan. He didn't go into much detail, but said not to worry about it, so I didn't push for too many details. It does seem to be bothering Karen, but she's pretty resilient and I'm sure she'll stop worrying about it once she's given it some more thought.
Overall, her blood work looks better than last time, but despite that, the doctor wasn't too happy with the results. He was quite happy with her hemoglobin count. It's still lower than where it should be, but it has risen quite sharply. Her platelet count has dropped a little, but he's still happy with where we are in regards to that. Where he's not so happy is with her red and white blood cell counts. They have both gone up, but they're not improving as quickly as they should be. Her white blood cell count is still lower than it was in March and April when she was on chemotherapy. Her protein levels are within the normal healthy range, so it's not due to low protein. At this point it's just another thing to keep an eye on.
Her neuropathy has finally stopped spreading. The weird electric-like shockwaves she had been feeling up her arms have gone away. What's new is a strange itching sensation in her fingers and toes that she doesn't seem to be able to scratch. She's also been dropping things. This change was gradual, and we didn't notice the increased frequency of drops until lately. Looking back, it seems it should have been apparent to us earlier, but everyone drops things and we weren't really watching for it. The doctors says this is just a side effect of the neuropathy. Everything else is about the same. Mostly just tingling with a little on and off numbness and mild "pins and needles" pain. I've mentioned temperature sensitivity before, but it's seems to be sticking around. Her hands hurt when touching something hot or cold. It's not as bad as the cold sensitivity she had when on oxaliplatin, but it's still notable.
The gabapentin she's taking for the neuropathy pains in her limbs doesn't seem to be working... until she misses a dose. Then her hands and feet really hurt. Even when she's on the gabapentin she has pain, so either the improvement was so gradual that she didn't notice it, or what seems more likely to me, is the pain from her neuropathy was getting worse around the same time she started the medication. The doctor upped the dosage by another 50%. Like last time, we have to ease into it. Hopefully this will get help with more of her neuropathic pain.
The last few chemo sessions she was really having a hard time walking long distances, so we'd often get a wheelchair when going into Mayo just because the parking lot was so big and it was such a walk to where we were going. She started using a cane off and on around that time and has grown more comfortable with it. I'm don't believe I've ever mentioned her cane use on the blog. Again, it was another gradual change; she would use it now and then, but gradually became a common thing. I should mention that she is still getting better at balancing and walking on numb feet, but she feels safer with the cane. That said, she is feeling comfortable going further distances without her cane. The doctor says you learn to compensate in other ways, vision being a big one, and warned her to be careful standing or walking in the dark.
Some people think that once the chemo is done, everything quickly returns to normal. If you asked us 6 months ago we would have had no reason to think otherwise, but now it seems obvious that the path to recovery is a long one. The doctors say it's not uncommon for the neuropathy to last more than a year after treatment ends. A recent study found the average recovery time to be 9 months, with some symptoms becoming "long term" problems. They haven't found medication that will reverse the neuropathy. Hopefully they can control the symptoms and the body works it out on it's own.
Overall, her blood work looks better than last time, but despite that, the doctor wasn't too happy with the results. He was quite happy with her hemoglobin count. It's still lower than where it should be, but it has risen quite sharply. Her platelet count has dropped a little, but he's still happy with where we are in regards to that. Where he's not so happy is with her red and white blood cell counts. They have both gone up, but they're not improving as quickly as they should be. Her white blood cell count is still lower than it was in March and April when she was on chemotherapy. Her protein levels are within the normal healthy range, so it's not due to low protein. At this point it's just another thing to keep an eye on.
Her neuropathy has finally stopped spreading. The weird electric-like shockwaves she had been feeling up her arms have gone away. What's new is a strange itching sensation in her fingers and toes that she doesn't seem to be able to scratch. She's also been dropping things. This change was gradual, and we didn't notice the increased frequency of drops until lately. Looking back, it seems it should have been apparent to us earlier, but everyone drops things and we weren't really watching for it. The doctors says this is just a side effect of the neuropathy. Everything else is about the same. Mostly just tingling with a little on and off numbness and mild "pins and needles" pain. I've mentioned temperature sensitivity before, but it's seems to be sticking around. Her hands hurt when touching something hot or cold. It's not as bad as the cold sensitivity she had when on oxaliplatin, but it's still notable.
The gabapentin she's taking for the neuropathy pains in her limbs doesn't seem to be working... until she misses a dose. Then her hands and feet really hurt. Even when she's on the gabapentin she has pain, so either the improvement was so gradual that she didn't notice it, or what seems more likely to me, is the pain from her neuropathy was getting worse around the same time she started the medication. The doctor upped the dosage by another 50%. Like last time, we have to ease into it. Hopefully this will get help with more of her neuropathic pain.
The last few chemo sessions she was really having a hard time walking long distances, so we'd often get a wheelchair when going into Mayo just because the parking lot was so big and it was such a walk to where we were going. She started using a cane off and on around that time and has grown more comfortable with it. I'm don't believe I've ever mentioned her cane use on the blog. Again, it was another gradual change; she would use it now and then, but gradually became a common thing. I should mention that she is still getting better at balancing and walking on numb feet, but she feels safer with the cane. That said, she is feeling comfortable going further distances without her cane. The doctor says you learn to compensate in other ways, vision being a big one, and warned her to be careful standing or walking in the dark.
Some people think that once the chemo is done, everything quickly returns to normal. If you asked us 6 months ago we would have had no reason to think otherwise, but now it seems obvious that the path to recovery is a long one. The doctors say it's not uncommon for the neuropathy to last more than a year after treatment ends. A recent study found the average recovery time to be 9 months, with some symptoms becoming "long term" problems. They haven't found medication that will reverse the neuropathy. Hopefully they can control the symptoms and the body works it out on it's own.
Wednesday, May 14, 2014
Bladder and Miscellaneous Updates
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.
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 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.
Thursday, April 17, 2014
Back Home
So yesterday morning the blood work came back showing improvement. Karen is no longer in danger of needing blood. In fact, all of the things they were watching in her lab work had shown improvement. She's feeling much better; she even managed to eat three breakfasts. And then a snack after lunch, a gluten free chocolate chip chocolate muffin, which she says was very good.
Her white blood cell count is still really low, but with things on the up swing and nothing much they can do for you when you have gastroenteritis, they agreed to release her. Her output has reduced greatly, but was still a concern. Part of her release includes getting the home hydration we've become comfortable with after chemotherapy. They won't send people home with an IV in their arm, but Karen's PowerPort lets us go home with IV access - they just send us the supplies and we call a home health nurse to de‑access her port when we're done.
Gastroenteritis, aka the stomach flu, can be fatal in people with weak immune systems, but it's actually very easily managed in a hospital. Some people seemed very concerned when finding out Karen was back in the hospital, but there's no better place for her to ride out a stomach bug. She was in very good hands with Mayo and we weren't worried once we'd arrived. We knew it was just a matter of time. Our biggest concerns weren't health related, but things like getting taxes done, and keeping the animals at home safe and fed.
Her white blood cell count is still really low, but with things on the up swing and nothing much they can do for you when you have gastroenteritis, they agreed to release her. Her output has reduced greatly, but was still a concern. Part of her release includes getting the home hydration we've become comfortable with after chemotherapy. They won't send people home with an IV in their arm, but Karen's PowerPort lets us go home with IV access - they just send us the supplies and we call a home health nurse to de‑access her port when we're done.
Gastroenteritis, aka the stomach flu, can be fatal in people with weak immune systems, but it's actually very easily managed in a hospital. Some people seemed very concerned when finding out Karen was back in the hospital, but there's no better place for her to ride out a stomach bug. She was in very good hands with Mayo and we weren't worried once we'd arrived. We knew it was just a matter of time. Our biggest concerns weren't health related, but things like getting taxes done, and keeping the animals at home safe and fed.
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