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.
Thursday, July 17, 2014
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.
Wednesday, April 16, 2014
Hospital Again
So this weekend we went down to Tucson to visit family and everything went really well. However come Monday afternoon, Karen was feeling quite nauseous and stoma output was very liquidy and very fast. This is equivalent to diarrhea for people with a stoma. She was losing a lot of fluid, and on top of that, had taken different anti‑nausea medications to try to control the nausea. Usually it only takes one to calm the nausea and you can alternate them, but nothing was working and she ended up vomiting around 2 pm. And despite all the chemotherapy she's been getting, she hasn't actually puked once. We called Mayo and were told to go to ER. They take any kind of illness very serious when you're on chemotherapy.
The first doctor we talked to said it was probably a stomach bug. They continued to give Karen anti‑nausea medications but she just kept vomiting. By the time they had admitted her, she had puked 3 more times. Although technically, she hadn't been admitted, just given a room and put on "watch", which allows them to keep her for 23 hours without admitting her. They said most stomach bugs pass in 12 hours.
After being admitted her vomiting stopped, but she continued to lose fluid quickly. There was some concern this could be food poisoning. "Salsa - it's always the salsa," said one doctor. Over the next 24 hours she lost over 6 liters of fluid. They were waiting for her output to slow down before letting her go, but it never slowed down. Since we get home hydration they entertained the idea of releasing Karen with a home hydration order. They said if she were convincing, they'd let her go, but she said she didn't feel like being convincing, and would wait till everyone was happy to release her. She was officially admitted to the hospital.
By the next day Karen was looking a lot better, the nausea had passed, and all the cultures and tests had come back negative for food poisoning. Seeing as how food poisoning had been ruled out, and any other possible toxins would be flushed out by now, they started her on Imodium to slow down her output. However, her electrolytes have dropped from all the diarrhea and release was now off the table - even though Karen herself was feeling better and now felt good enough to leave. Her blood cell counts have also been falling. They're already low from the chemotherapy, so any drop makes people concerned. If the numbers continue to drop tomorrow, there's a good chance she'll be getting a blood transfusion.
We're still not sure when she'll be able to leave. Some doctors say tomorrow, but the oncology department seems to want her to stay through the weekend. Either way, she missed chemotherapy this week and there will be some additional time off from chemotherapy. Karen was actually quite excited about finishing up her last two sessions of chemo, but now it looks like there will be at least a small delay in that.
The first doctor we talked to said it was probably a stomach bug. They continued to give Karen anti‑nausea medications but she just kept vomiting. By the time they had admitted her, she had puked 3 more times. Although technically, she hadn't been admitted, just given a room and put on "watch", which allows them to keep her for 23 hours without admitting her. They said most stomach bugs pass in 12 hours.
After being admitted her vomiting stopped, but she continued to lose fluid quickly. There was some concern this could be food poisoning. "Salsa - it's always the salsa," said one doctor. Over the next 24 hours she lost over 6 liters of fluid. They were waiting for her output to slow down before letting her go, but it never slowed down. Since we get home hydration they entertained the idea of releasing Karen with a home hydration order. They said if she were convincing, they'd let her go, but she said she didn't feel like being convincing, and would wait till everyone was happy to release her. She was officially admitted to the hospital.
By the next day Karen was looking a lot better, the nausea had passed, and all the cultures and tests had come back negative for food poisoning. Seeing as how food poisoning had been ruled out, and any other possible toxins would be flushed out by now, they started her on Imodium to slow down her output. However, her electrolytes have dropped from all the diarrhea and release was now off the table - even though Karen herself was feeling better and now felt good enough to leave. Her blood cell counts have also been falling. They're already low from the chemotherapy, so any drop makes people concerned. If the numbers continue to drop tomorrow, there's a good chance she'll be getting a blood transfusion.
We're still not sure when she'll be able to leave. Some doctors say tomorrow, but the oncology department seems to want her to stay through the weekend. Either way, she missed chemotherapy this week and there will be some additional time off from chemotherapy. Karen was actually quite excited about finishing up her last two sessions of chemo, but now it looks like there will be at least a small delay in that.
Tuesday, March 18, 2014
Back To Mayo
The previous two chemotherapy treatments had continued to be rougher and rougher on Karen, but nothing significant happened. Karen did get a small staff infection in an ingrown hair. Arizona Oncology wrote a prescription for some antibiotics, but just to be safe we went down to Mayo clinic to see a doctor there about it. They took a culture and found out it was resistant to quite a few antibiotics, including the one Karen was currently on. It cleared up quickly after changing antibiotics. While, technically, it wasn't MRSA, it was resistant to a sufficient number of antibiotics to flag Karen for MRSA.
Karen doesn't have the energy to go out anywhere most of the time as of late, but even when she does have the energy, the cold sensitivities or other chemo side effects tend to make her want to stay in. If she can get past all that, she is really good about wearing a mask, and we're both really good about washing our hands when we come back from an outing. So we started to wonder where she could have gotten a "hospital bug" from. At her next chemotherapy appointment, Karen pointed out one of the nurses at Arizona Oncology that didn't consistently use gloves. They don't use masks for accessing ports like they do at Mayo, but they deal with so many ports and we hadn't see anyone drop dead from the lack of a mask, so we had gotten use to the idea. But not using gloves was a bit much. They already have everyone crammed into one square room, and since the pumps need to be plugged into the wall, everyone is elbow to elbow against the wall.
Karen also needed another blood transfusion due to low hemoglobin. Arizona Oncology wanted to do a bone marrow biopsy for further investigation. The nurse who brought the news to us followed up with, "Don't worry. It's not as bad as people say it is." Which is the worst thing you can say. First, she's probably never had it done herself, so how would she know? Why should we take her word over others? And second, we had no preconceptions about the procedure, but now we had the most horrible images in our mind. The idea of a bone marrow biopsy was just flat out scarey after that. Karen now had something new to worry about, and worrying about a procedure can be just as tough on you as the pain and discomfort of the procedure itself.
However, with the MRSA scare fresh in our minds, we decided to contact Mayo and have it done there instead. Without encouragement from us, the oncologist we're working with at Mayo said it was unnecessary at this time. So with everything that had been going on, and with our new concerns about Arizona Oncology, we decided to do the remaining 4 treatments at Mayo, despite the hour long drive. The drive is about twice as far as the Mayo location we normally visit, since they don't do Chemotherapy at that location.
We set up an appointment for last Tuesday to get some blood work, meet with the oncologist there, and have chemotherapy. They found, along with the usual low blood cell counts, that Karen's platelets had now dropped as well. In addition to that, she was still having nausea and taking anti-nausea medication, and it had always gone away by the start of her next treatment. The oncologist said her body was telling us it needs a week off.
Karen was glad to have the break, but was unsure if it was a good thing or not. She said she felt like she was suspended from school for doing something wrong, but now gets to stay home and watch TV. Unfortunately, I don't think the week went as well had she had hoped. Mostly because the chemo has been building up in her system, and hitting her so hard; it took almost the whole week to recover to where she would normally be before chemo. She was in a lot more pain than usual, and ended up sleeping most of the time. Still, I think the break was good for her.
We went in back into Mayo today for another attempt at her ninth treatment. Her platelet count was the biggest concern last time, and it had recovered nicely. Her hemoglobin had still dropped a little, but she was healthy enough for chemo.
The oncologist said it's not uncommon for people to only receive 8 treatments of the chemotherapy medication Oxaliplatin when they have stage IV colon cancer. This is to avoid any permanent nerve damage that can occur, especially with future treatments, as such advanced cancer has a way of popping back up again. Since Karen had received HIPEC during surgery, there's a better chance there won't be recurrences, and 12 treatments with Oxaliplatin fit in with that aggressive line of treatment. However, seeing how much it had been effecting Karen, the doctor decided to drop the Oxaliplatin for the remainder of her chemotherapy, leaving her at 8 treatments.
Along with the neuropathy, this drug is also responsible for her cold sensitivity. Karen's issues with cold sensitivity should start to drop off right away, but he said the neuropathy will continue to get worse for a "quite a while." He wouldn't say exactly how long until it starts to get better, but it's going to be one of those things that varies from person to person anyway. At least from now on the remainder of her treatments should be easier on her body, which will be nice after the consistently stronger side effects. He thinks we may even be able to back off some of the nausea medication for the remainder of her treatments. We'll see about that.
Chemotherapy at Mayo is a quite a bit different. And it's not just with the use of masks and gloves. Patients are in a room I can only describe as U shaped. You not only have a good 10 feet between patients, but there are separating walls between units, and yes, your own TV. Much like Arizona Oncology, they have several different flavors of juice, protein drinks, coffee, etc. The only possible down side - if you can even really call it that - is they have no complimentary junk food for the patients here. There are bowls of individually wrapped crackers scattered around, and they have unsweetened apple sauce, fruit bars, granola bars, etc. But the tasty junk food is missing; no more Cheez-Its, M&Ms, and candy bars during chemo. Of course at Arizona Oncology they had a big sign on the snacks saying "FOR PATIENTS ONLY" and here it seems like everyone is trying to give me something.
The delays seem to be about the same as at Arizona Oncology, which is disappointing, but I guess there is an order to things. They don't want to mix the chemotherapy until you get the OK from your doctor - your actual doctor, not an assistant like at Arizona Oncology - and the doctor won't OK you unless you and your blood work look well. So there's delays each step of the way: bloodwork, delay, doctor visit, delay, chemotherapy.
Everything went quite well though, except the nausea was still there and they ended up giving her the anti-nausea medications she usually got despite the hope we'd be able to start cutting back. Hopefully this side effect will fade over the next few treatments as the doctor predicted. We go back in Thursday to have the pump removed. I think we're going to keep getting the home hydration, at least this time around, if for no other reason than to help her clear everything out of her system faster.
Karen doesn't have the energy to go out anywhere most of the time as of late, but even when she does have the energy, the cold sensitivities or other chemo side effects tend to make her want to stay in. If she can get past all that, she is really good about wearing a mask, and we're both really good about washing our hands when we come back from an outing. So we started to wonder where she could have gotten a "hospital bug" from. At her next chemotherapy appointment, Karen pointed out one of the nurses at Arizona Oncology that didn't consistently use gloves. They don't use masks for accessing ports like they do at Mayo, but they deal with so many ports and we hadn't see anyone drop dead from the lack of a mask, so we had gotten use to the idea. But not using gloves was a bit much. They already have everyone crammed into one square room, and since the pumps need to be plugged into the wall, everyone is elbow to elbow against the wall.
Karen also needed another blood transfusion due to low hemoglobin. Arizona Oncology wanted to do a bone marrow biopsy for further investigation. The nurse who brought the news to us followed up with, "Don't worry. It's not as bad as people say it is." Which is the worst thing you can say. First, she's probably never had it done herself, so how would she know? Why should we take her word over others? And second, we had no preconceptions about the procedure, but now we had the most horrible images in our mind. The idea of a bone marrow biopsy was just flat out scarey after that. Karen now had something new to worry about, and worrying about a procedure can be just as tough on you as the pain and discomfort of the procedure itself.
However, with the MRSA scare fresh in our minds, we decided to contact Mayo and have it done there instead. Without encouragement from us, the oncologist we're working with at Mayo said it was unnecessary at this time. So with everything that had been going on, and with our new concerns about Arizona Oncology, we decided to do the remaining 4 treatments at Mayo, despite the hour long drive. The drive is about twice as far as the Mayo location we normally visit, since they don't do Chemotherapy at that location.
We set up an appointment for last Tuesday to get some blood work, meet with the oncologist there, and have chemotherapy. They found, along with the usual low blood cell counts, that Karen's platelets had now dropped as well. In addition to that, she was still having nausea and taking anti-nausea medication, and it had always gone away by the start of her next treatment. The oncologist said her body was telling us it needs a week off.
Karen was glad to have the break, but was unsure if it was a good thing or not. She said she felt like she was suspended from school for doing something wrong, but now gets to stay home and watch TV. Unfortunately, I don't think the week went as well had she had hoped. Mostly because the chemo has been building up in her system, and hitting her so hard; it took almost the whole week to recover to where she would normally be before chemo. She was in a lot more pain than usual, and ended up sleeping most of the time. Still, I think the break was good for her.
We went in back into Mayo today for another attempt at her ninth treatment. Her platelet count was the biggest concern last time, and it had recovered nicely. Her hemoglobin had still dropped a little, but she was healthy enough for chemo.
The oncologist said it's not uncommon for people to only receive 8 treatments of the chemotherapy medication Oxaliplatin when they have stage IV colon cancer. This is to avoid any permanent nerve damage that can occur, especially with future treatments, as such advanced cancer has a way of popping back up again. Since Karen had received HIPEC during surgery, there's a better chance there won't be recurrences, and 12 treatments with Oxaliplatin fit in with that aggressive line of treatment. However, seeing how much it had been effecting Karen, the doctor decided to drop the Oxaliplatin for the remainder of her chemotherapy, leaving her at 8 treatments.
Along with the neuropathy, this drug is also responsible for her cold sensitivity. Karen's issues with cold sensitivity should start to drop off right away, but he said the neuropathy will continue to get worse for a "quite a while." He wouldn't say exactly how long until it starts to get better, but it's going to be one of those things that varies from person to person anyway. At least from now on the remainder of her treatments should be easier on her body, which will be nice after the consistently stronger side effects. He thinks we may even be able to back off some of the nausea medication for the remainder of her treatments. We'll see about that.
Chemotherapy at Mayo is a quite a bit different. And it's not just with the use of masks and gloves. Patients are in a room I can only describe as U shaped. You not only have a good 10 feet between patients, but there are separating walls between units, and yes, your own TV. Much like Arizona Oncology, they have several different flavors of juice, protein drinks, coffee, etc. The only possible down side - if you can even really call it that - is they have no complimentary junk food for the patients here. There are bowls of individually wrapped crackers scattered around, and they have unsweetened apple sauce, fruit bars, granola bars, etc. But the tasty junk food is missing; no more Cheez-Its, M&Ms, and candy bars during chemo. Of course at Arizona Oncology they had a big sign on the snacks saying "FOR PATIENTS ONLY" and here it seems like everyone is trying to give me something.
The delays seem to be about the same as at Arizona Oncology, which is disappointing, but I guess there is an order to things. They don't want to mix the chemotherapy until you get the OK from your doctor - your actual doctor, not an assistant like at Arizona Oncology - and the doctor won't OK you unless you and your blood work look well. So there's delays each step of the way: bloodwork, delay, doctor visit, delay, chemotherapy.
Everything went quite well though, except the nausea was still there and they ended up giving her the anti-nausea medications she usually got despite the hope we'd be able to start cutting back. Hopefully this side effect will fade over the next few treatments as the doctor predicted. We go back in Thursday to have the pump removed. I think we're going to keep getting the home hydration, at least this time around, if for no other reason than to help her clear everything out of her system faster.
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