Karen received her sixth chemotherapy treatment from January 28th to 30th. Each time before chemo, they do some blood work. I've mentioned the blood cell counts before. Early on there was a problem with white blood cell count, but the shot of Pegfilgrastim (aka Neulasta) they give her has managed to bring those numbers above critical. However, red blood cell count and hemoglobin have continued to fall. Another thing they monitor are tumor markers. These are substances that often become elevated in the body when there's a tumor. Two of these, CEA and CA19-9, have slowly been climbing. They are only hints, as other things can elevate these numbers. For example, smoking can raise your CEA levels to those found in cancer patients.
The plan was always to have some bloodwork and another CAT scan done at Mayo Clinic after the sixth treatment. This was done yesterday, and we saw the oncologist at Mayo today. The good news is that the CAT scan is clean. There were no new growths. Surprisingly, the bloodwork showed that her CEA had dropped drastically in just the week since her last bloodwork. It's actually the lowest it's been since starting chemotherapy.
Her CA19-9 however, continues to climb. While this can be a sign of something bad, the doctor says it's still possible these numbers are just a reaction to her extensive surgery. And we'll just continue to watch the levels for now. Her hemoglobin has also now fallen into critical range; this explains some of the weakness she's been feeling. They suggested she get two units of blood, and being eager to feel better, she agreed. She received both units of blood over roughly 4 hours. Hopefully this helps with her energy levels.
The doctor says, assuming CA19-9 starts to drop, and CEA stays low, the plan will be to continue chemotherapy as is for another 6 treatments. Everyone we've talked to - even the Oncologist at Mayo who warned us heavily about neuropathy becoming permanent - seems reluctant to reduce the Oxaliplatin. Karen isn't too happy about this, but seems willing to hang on to the full dose as long as she can. On the bright side of things, this means she's officially half way done with this round of treatment. A month or so after she finishes treatment, they'll do another cat scan to check for any growth or changes. And then just watch it very carefully.
Thursday, February 6, 2014
Monday, January 13, 2014
Another One Down
Karen started chemotherapy December 31st, and the pump came off January 2nd. And we're ready to start again tomorrow. There's been no major problems or emergency visits to the hospital, but there only seems to be a couple of good days before starting chemo again. Each session seems to play out roughly the same.
When we go in for chemo there's a small wait, we usually see the physicians assistant first. She's very nice - we like her more than the doctor - and she asks Karen how's she's doing and makes suggestions to help her through the chemo. Last time, seeing that that extra hydration Karen received had helped, she signed her up for "home hydration." That's where we receive saline over IV at home. We were lined up with half a liter a day for 3 days. For comparison, when they give Karen hydration at the clinic, it's a full liter at a time.
We got a big package from Walgreen's, of all places, and a home health nurse came by to show me up how to hook everything up to Karen's port - which Arizona Oncology left accessed - and then came back 3 days later to de-access the port. This helped, and Karen felt better, but it wasn't enough and we ended up going back in on Wednesday (the 8th) for more fluids. So they told us they will set us up with 6 days worth of home hydration next time.
The chemo symptoms start with cold sensitivity; being the worst the first three days. I assume this is from the Oxaliplatin they give the first day. This lessens over time, but it no longer passes between treatments. They said symptoms will get worse over time, and this one certainly is. It's to the point where she constantly wears gloves and heavy socks, and wears a mask to cover her nose when she goes out. When it's at it's worst she can only drink warm fluids, and even at her best, metal silverware is too cold to hold even through gloves.
There are occasionally cramps in her hands these first several days. There's some foot cramping too, but it seems much less common. She says it's nothing unbearable. There's also the hiccups during this time but she can control them quite effectively through relaxation; this symptom might actually be lessening. By the second day she's feel pretty tired and starts sleeping a lot. This is also when her finger pains start. These are unrelated, but compounded by, her cold sensitivity. This is called neuropathy, and with the extreme cold sensitivity she gets, it's hard for her to tell one apart from the other. It may actually be reaching from one session to the next at this point.
On the third day of her treatment, when the pump comes off, she gets another dose of Aloxi, which makes a huge difference over what had previously been her two most nauseous days, bringing it completely under control now. Along with everything else they are doing, we only have to stay on top of the ondansetron (aka Zofran) to keep the nausea away. It's only the smell of certain foods that set it off, my beloved garlic being one of them. A lot of fried and grilled foods with strong smells do it as well, grilled peppers being another example.
In addition to the chemotherapy induced nausea, some of the nausea is also brought on by dehydration. As I mentioned earlier, they have been giving her a liter of hydration during each visit. The major cause of the dehydration is the diarrhea that starts on the third day as well. It slows down, but lasts for nearly a week. If she drinks too much fluid too quickly, even when she's not on chemo, everything comes flushing out. Coffee is particularly good at this, but anything can do it. So once the diarrhea starts, it's very hard to catch up.
To make staying hydrated even more difficult, anything she drinks has to be warm due to her cold sensitivity. And warm water by itself isn't pleasant. Lately we've been squeezing lemon into the water, which helps, and there are occasions where she'll feel like tea. But we have to be careful with sugar, as it makes the diarrhea worse. This is a constant battle, and why they've started hydration at home.
On her pump-off day, she receives an injection into her abdomen which stimulates white cell production. This causes bone pain, and weakness and fatigue similar to what you can get with a flu. Oh, and another side effect is diarrhea! They have her take naproxin before coming in so that it's already in effect when they give her the shot. Perhaps due to the careful management of the naproxin, she's never really noticed the bone pain. Or maybe she just doesn't notice it with all the other chemo side effects in the mix. She has mentioned feeling like she has the flu for several days after.
The weakness and fatigue are pretty much every day. While the injection to raise the white blood cell count has this effect, she had weakness and fatigue before they started it, just from the chemo drugs. The worst of it does seem to be for those first three days after the pump comes off, but her energy level is slow to recover.
All in all, she feels pretty bad for the first 8 or 9 days. There's 2 to 3 days where she can drink room temperature water and I start to see larger gains in her energy level, but in the end, that only leaves 2 or 3 truly "good" days before starting chemotherapy again.
When we go in for chemo there's a small wait, we usually see the physicians assistant first. She's very nice - we like her more than the doctor - and she asks Karen how's she's doing and makes suggestions to help her through the chemo. Last time, seeing that that extra hydration Karen received had helped, she signed her up for "home hydration." That's where we receive saline over IV at home. We were lined up with half a liter a day for 3 days. For comparison, when they give Karen hydration at the clinic, it's a full liter at a time.
We got a big package from Walgreen's, of all places, and a home health nurse came by to show me up how to hook everything up to Karen's port - which Arizona Oncology left accessed - and then came back 3 days later to de-access the port. This helped, and Karen felt better, but it wasn't enough and we ended up going back in on Wednesday (the 8th) for more fluids. So they told us they will set us up with 6 days worth of home hydration next time.
The chemo symptoms start with cold sensitivity; being the worst the first three days. I assume this is from the Oxaliplatin they give the first day. This lessens over time, but it no longer passes between treatments. They said symptoms will get worse over time, and this one certainly is. It's to the point where she constantly wears gloves and heavy socks, and wears a mask to cover her nose when she goes out. When it's at it's worst she can only drink warm fluids, and even at her best, metal silverware is too cold to hold even through gloves.
There are occasionally cramps in her hands these first several days. There's some foot cramping too, but it seems much less common. She says it's nothing unbearable. There's also the hiccups during this time but she can control them quite effectively through relaxation; this symptom might actually be lessening. By the second day she's feel pretty tired and starts sleeping a lot. This is also when her finger pains start. These are unrelated, but compounded by, her cold sensitivity. This is called neuropathy, and with the extreme cold sensitivity she gets, it's hard for her to tell one apart from the other. It may actually be reaching from one session to the next at this point.
On the third day of her treatment, when the pump comes off, she gets another dose of Aloxi, which makes a huge difference over what had previously been her two most nauseous days, bringing it completely under control now. Along with everything else they are doing, we only have to stay on top of the ondansetron (aka Zofran) to keep the nausea away. It's only the smell of certain foods that set it off, my beloved garlic being one of them. A lot of fried and grilled foods with strong smells do it as well, grilled peppers being another example.
To make staying hydrated even more difficult, anything she drinks has to be warm due to her cold sensitivity. And warm water by itself isn't pleasant. Lately we've been squeezing lemon into the water, which helps, and there are occasions where she'll feel like tea. But we have to be careful with sugar, as it makes the diarrhea worse. This is a constant battle, and why they've started hydration at home.
On her pump-off day, she receives an injection into her abdomen which stimulates white cell production. This causes bone pain, and weakness and fatigue similar to what you can get with a flu. Oh, and another side effect is diarrhea! They have her take naproxin before coming in so that it's already in effect when they give her the shot. Perhaps due to the careful management of the naproxin, she's never really noticed the bone pain. Or maybe she just doesn't notice it with all the other chemo side effects in the mix. She has mentioned feeling like she has the flu for several days after.
The weakness and fatigue are pretty much every day. While the injection to raise the white blood cell count has this effect, she had weakness and fatigue before they started it, just from the chemo drugs. The worst of it does seem to be for those first three days after the pump comes off, but her energy level is slow to recover.
All in all, she feels pretty bad for the first 8 or 9 days. There's 2 to 3 days where she can drink room temperature water and I start to see larger gains in her energy level, but in the end, that only leaves 2 or 3 truly "good" days before starting chemotherapy again.
Wednesday, December 18, 2013
Chemo and Ranch
We went in bright and early for our scheduled chemotherapy treatment at 8:15 am this morning. The place was empty. There was only 2 or 3 other patients there. I don't know if it's because it was earlier than normal, or if it was due to it being a Wednesday instead of a Monday. Her temperature was normal and her blood work came back fine - well, better than last time - and she was OK'd for chemo.
They started the hydration - saline solution - with something for nausea, Aloxi plus Emend. This is the first time I caught the Emend part of the mixture, but upon looking into, it seems pretty normal to give with Aloxi. And when I asked about it, they said they had always given it to Karen. The reason I asked however, was due to the nausea she was having. It seemed to be so well contained last time, it was strange that she was so nauseous this time. She was quite disappointed, and said she thought they had worked this out last time. When I mentioned it, they said the only thing they could give her would be Ativan (lorazepam). This confirms my guess from the last treatment; it was certainly what they gave her last time. The nurse asked her if she wanted it, and Karen was eager to get anything that would help with the nausea. She went from alert to sleepy, and nodded off for a bit.
When she woke up, the nausea had not only passed, but she had an appetite. And she wanted food. They allow you to bring food in with you while you're getting chemo, and there's a Carl's Jr in the same strip mall as Arizona Oncology. So we looked up their menu online and I went over and picked her up some fries and fried zucchini. Her hands were already cold sensitive to the point where her fingers burned when she moved her IV drip stand, so the warm food felt good on her fingers. Karen and I agree, Carl Jr's house dressing is pretty gross - at least their buttermilk ranch is acceptable.
The hydration they're doing adds roughly an hour or so to her treatment, but this was the first time she was actually able to sleep during chemo, so it didn't really seem much longer. It also didn't seem to hit her as hard as last time, and she's been up most of the day since. She laid down about half an hour ago to read and fell asleep, but that can be hard to do even when you're not on chemo. All in all, I'd she's off to a good start this round. Let's hope things continue well on through Christmas.
The hydration they're doing adds roughly an hour or so to her treatment, but this was the first time she was actually able to sleep during chemo, so it didn't really seem much longer. It also didn't seem to hit her as hard as last time, and she's been up most of the day since. She laid down about half an hour ago to read and fell asleep, but that can be hard to do even when you're not on chemo. All in all, I'd she's off to a good start this round. Let's hope things continue well on through Christmas.
Tuesday, December 17, 2013
Small Reprieve
The effects of chemo were about the same this time around. While Karen still had some nausea, it has been much better managed this time around. Certain strong smells still make her nauseous, but she was able to eat much better. She had a migraine again but she's no stranger to migraines and once every two weeks doesn't seem unbearable. Her cold sensitivity was much worse. She wasn't able to drink anything that wasn't warmed for about a week after her pump was removed, even room temperature liquids were too cold. She's also been getting canker sores in her mouth since she started chemo. However, since that can happen from time to time, she didn't give it a second thought until it persisted into her second treatment.
So on Monday we saw the physician working with Karen at Arizona Oncology. After mentioning the canker sores, the doctor confirmed that it's probably a side effect of the chemotherapy, and she wrote a prescription for a mouthwash. It's a big mix of things, but is mostly just Benadryl. The directions say to rinse with it and then swallow. Karen's also been fighting an upper respiratory infection of some sort for over a week. They had given her antibiotics to make sure it didn't turn into anything worse, but her nightly fevers had gone up to 100.1° F and that concerned the doctor enough to postpone chemo a few days. We rescheduled for Wednesday, with pump removal on Friday.
So on Monday we saw the physician working with Karen at Arizona Oncology. After mentioning the canker sores, the doctor confirmed that it's probably a side effect of the chemotherapy, and she wrote a prescription for a mouthwash. It's a big mix of things, but is mostly just Benadryl. The directions say to rinse with it and then swallow. Karen's also been fighting an upper respiratory infection of some sort for over a week. They had given her antibiotics to make sure it didn't turn into anything worse, but her nightly fevers had gone up to 100.1° F and that concerned the doctor enough to postpone chemo a few days. We rescheduled for Wednesday, with pump removal on Friday.
Wednesday, December 4, 2013
And It's Off
I'm glad to say I couldn't have been more wrong about yesterday. Karen was awake and alert most of the day. I'm not sure if it's because she slept through Monday, if it's the new medication they gave her via IV, or if she's just getting use to the chemo - can you do that? She seems to be handling it much better this time around.
We were seeing her general care physician yesterday. He's been getting updates from Mayo Clinic via fax and is keeping up with everything going on. You can tell he really cares about Karen, and it's always nice to hear an outside medical opinion about her situation. It also makes it easy to get any paperwork filled out, such as return to work, or disability forms. During her visits, we have literally sit down with the doctor and his assistant - who happens to be his wife - and gone over whatever paperwork we have. When she asked about going back to work he was quick to say, "No, don't do that!" But said he'd be willing to sign a work release if that's what she really wants.
Karen has been having doubts about going back to work during her chemotherapy, especially since it's been so tough on her. I know she really likes everyone she works with and misses them, but it really seems less and less likely that she'll actually be able to work. She's been asking everyone what to do. I want her to be happy, but don't know what to suggest. She has a lot of side effects from chemo. Even if she can get around the usual nausea that bothered her almost the whole time the first two weeks, strong smells often make her nauseous. She's still on prescription pain medication. She never got over the cold sensitivity with her hands, it makes them tingle and hurt. Her white blood cell count is way down, which means she's susceptible to disease. And sometimes she just has to sleep. Staying out of work makes sense, but then what about all of her work friends? What about the satisfaction a good days work brings her? What about her job?
Karen's father came down to visit today. She figured her pump was about finished when he got here, so we went to Arizona Oncology to have it removed. We only waited 5 to 10 minutes before they took us back. There was 0.5 ml out of 100 ml left in the pump, but they disconnected it anyway. It was 99.5% finished; I guess that's good enough. We asked for some IV fluids like we had talked about with the PA, and another 5 to 10 minutes later they had it going. It's just a sterile solution of 0.9% sodium chloride, aka saline. This is suppose to help with the dehydration Karen's been experiencing, which is likely making her sleepiness and nausea worse, as those are symptoms of dehydration. It took about an hour, but Karen did feel better.
There had also been talk of receiving more of the anti nausea medication Aloxi, to be given during her return visit. But, like the saline, it didn't seem to get written down. We didn't have to twist any arms to get it, but when I asked they had to run off for a few minutes to get it approved. If I didn't think to mention it, we'd have gone without. The Aloxi is normally only given on the first day of your chemotherapy, and it stays in your system for two days. This explains why her nausea didn't really get bad last time until the pump came off, because the pump comes off after two days. Hopefully this will let us stay ahead of the nausea this time.
So far so good.
We were seeing her general care physician yesterday. He's been getting updates from Mayo Clinic via fax and is keeping up with everything going on. You can tell he really cares about Karen, and it's always nice to hear an outside medical opinion about her situation. It also makes it easy to get any paperwork filled out, such as return to work, or disability forms. During her visits, we have literally sit down with the doctor and his assistant - who happens to be his wife - and gone over whatever paperwork we have. When she asked about going back to work he was quick to say, "No, don't do that!" But said he'd be willing to sign a work release if that's what she really wants.
Karen has been having doubts about going back to work during her chemotherapy, especially since it's been so tough on her. I know she really likes everyone she works with and misses them, but it really seems less and less likely that she'll actually be able to work. She's been asking everyone what to do. I want her to be happy, but don't know what to suggest. She has a lot of side effects from chemo. Even if she can get around the usual nausea that bothered her almost the whole time the first two weeks, strong smells often make her nauseous. She's still on prescription pain medication. She never got over the cold sensitivity with her hands, it makes them tingle and hurt. Her white blood cell count is way down, which means she's susceptible to disease. And sometimes she just has to sleep. Staying out of work makes sense, but then what about all of her work friends? What about the satisfaction a good days work brings her? What about her job?
Karen's father came down to visit today. She figured her pump was about finished when he got here, so we went to Arizona Oncology to have it removed. We only waited 5 to 10 minutes before they took us back. There was 0.5 ml out of 100 ml left in the pump, but they disconnected it anyway. It was 99.5% finished; I guess that's good enough. We asked for some IV fluids like we had talked about with the PA, and another 5 to 10 minutes later they had it going. It's just a sterile solution of 0.9% sodium chloride, aka saline. This is suppose to help with the dehydration Karen's been experiencing, which is likely making her sleepiness and nausea worse, as those are symptoms of dehydration. It took about an hour, but Karen did feel better.
There had also been talk of receiving more of the anti nausea medication Aloxi, to be given during her return visit. But, like the saline, it didn't seem to get written down. We didn't have to twist any arms to get it, but when I asked they had to run off for a few minutes to get it approved. If I didn't think to mention it, we'd have gone without. The Aloxi is normally only given on the first day of your chemotherapy, and it stays in your system for two days. This explains why her nausea didn't really get bad last time until the pump came off, because the pump comes off after two days. Hopefully this will let us stay ahead of the nausea this time.
So far so good.
Tuesday, December 3, 2013
Round Two
So today was the start of Karen's second chemotherapy treatment. She had pretty much recovered from the first one, but it was quite hard on her. So hard in fact, they almost didn't do chemo this time. You could tell she was really fretting another treatment.
Our day started with an appointment with the physician's assistant (PA). The title might make it sound like she's just someone who runs around doing little things for the physician, but it's a formal title and PAs are licensed to practice medicine. She asked us about how it went last time to see what they could do to make things better this time around.
The cramping in her hand was the worst that first day, and calmed down a lot when they took the pump off on the third day. The PA wasn't fazed by this. We didn't feel the cramps were bad enough to medication, and Karen's all for taking less medication if she doesn't need it.
The cold sensitivity pretty much stuck with Karen both weeks. After that first week she could eventually drink cold liquids, but even during the second week her hands were sensitive to cold. As I had mentioned before, grabbing something out of the fridge felt like she was taking something out of a -70° freezer at work. I don't know if there's anything that can be done about this, but the PA did note it.
Karen only experienced the one migraine early on, and she wasn't even sure it hadn't been brought on by the weather system that blew into town and made it storm like crazy. The PA was content that the medication Karen had for migraines worked.
The diarrhea I mentioned last time subsisted through Friday. Due to the stoma, it's not as difficult or frustrating a problem as it would otherwise be. But she did have trouble staying hydrated even after that had stopped. They told us hydration is a common problem and that she'd probably feel better if she got some fluids via IV when she came in to get the pump disconnected.
The cheap thermometer we had broke, so when things turned bad again that second week, we got another one. It's a much nicer one this time, a temporal artery thermometer. They're very quick and easy to use; you just run it across your forehead. That whole last week she had low grade fevers at night. Mostly around 99.5°. The highest we saw it at was 99.7°. We were instructed to call if it ever got up to 100.5°. So we never had to call in, but we mentioned it to the PA during our visit. She said fevers are not uncommon for people on chemo, and if it does break 100, to try taking some Tylenol to bring it back down.
We also explained that Karen was nauseous most of the two weeks. While she started to feel better Sunday - four days after she finished with the pump - and was pretty good Monday, she was nauseous and weak again by Tuesday night. It wasn't until this Friday that she started to feel good once more. The PA wasn't happy to hear this or how little Karen had been eating. So Karen is going to get something in addition to the other anti-nausea medication during chemo to help with the nausea, and something extra when she comes in to have the pump removed on Wednesdays. She also increased her dosage of ondansetron (Zofran).
We didn't notice until later that the Zofran had been "increased" to from 4 mg every 4 hours, to 8 mg every 8 hours. It works by blocking the receptors in the brain that receive the signal telling your body to be nauseous, so they recommended, rather then waiting till she's starting to feel nauseous, or before a meal as we had been doing, to just take it 3 times a day, the same time, every day, so it would constantly be in her system.
From there we found some seats in the chemotherapy room. The first thing they do when you sit down, aside from access your port, is blood work. They run a complete blood count to check your blood cell levels since chemotherapy can mess with them. While both her white and red blood cell counts were low, it was the white blood cell count that really seemed to concern them. They said if it were any lower they'd have to delay things a week. They ran some more blood tests and finally decided she would be OK for chemo.
The steroid they gave her last time didn't give her that boost of energy this time. They said the extra anti-nausea medication would knock her out, which leads me to believe it's actually lorazepam (Ativan). It's normally for anxiety, but off label it's used as an anti-nausea medication. A couple times when Karen was having trouble with nausea at Mayo Clinic they told her if she were anxious she could get Ativan which would also help with nausea. And then they'd ask if she were anxious. But she almost always said no. I wonder now if it was just some sort of technicality. When she did get it at Mayo Clinic, it made her drowsy like this.
Her cold sensitivity started much sooner this time, and she says she's more sensitive this time, and the effects last longer. Even just touching a cold door knob can set it off, but to be fair, I think it's much colder now. And also like last time, her hands are cramping and it hurts in her jaw and neck when she chews things. Water has that same bad taste as well. She hasn't had any trouble with nausea but if I recall correctly, it didn't get bad until after the pump was removed. She also didn't get the hiccups last time until then as well. I'm not sure if these things will start happening sooner though, or if it will follow the same pattern every time.
When we got home she ate a little bit of food but was having trouble staying awake and went to bed. She slept most of the day but got up a bit in the evening long enough to eat and get another migraine. Once again she had to take the maximum dosage of her anti-migraine medication to get rid of it, which also tends to make her sleepy. So that was it for her Monday. I assume she'll sleep through most of Tuesday and Wednesday as well, since she did last time. She has an appointment tomorrow with her general care physician, but I'm not sure she's going to be up for it. I don't think we had the chemo schedule fully planned out yet when the appointment was scheduled. I guess we'll see.
Our day started with an appointment with the physician's assistant (PA). The title might make it sound like she's just someone who runs around doing little things for the physician, but it's a formal title and PAs are licensed to practice medicine. She asked us about how it went last time to see what they could do to make things better this time around.
The cramping in her hand was the worst that first day, and calmed down a lot when they took the pump off on the third day. The PA wasn't fazed by this. We didn't feel the cramps were bad enough to medication, and Karen's all for taking less medication if she doesn't need it.
The cold sensitivity pretty much stuck with Karen both weeks. After that first week she could eventually drink cold liquids, but even during the second week her hands were sensitive to cold. As I had mentioned before, grabbing something out of the fridge felt like she was taking something out of a -70° freezer at work. I don't know if there's anything that can be done about this, but the PA did note it.
Karen only experienced the one migraine early on, and she wasn't even sure it hadn't been brought on by the weather system that blew into town and made it storm like crazy. The PA was content that the medication Karen had for migraines worked.
The diarrhea I mentioned last time subsisted through Friday. Due to the stoma, it's not as difficult or frustrating a problem as it would otherwise be. But she did have trouble staying hydrated even after that had stopped. They told us hydration is a common problem and that she'd probably feel better if she got some fluids via IV when she came in to get the pump disconnected.
The cheap thermometer we had broke, so when things turned bad again that second week, we got another one. It's a much nicer one this time, a temporal artery thermometer. They're very quick and easy to use; you just run it across your forehead. That whole last week she had low grade fevers at night. Mostly around 99.5°. The highest we saw it at was 99.7°. We were instructed to call if it ever got up to 100.5°. So we never had to call in, but we mentioned it to the PA during our visit. She said fevers are not uncommon for people on chemo, and if it does break 100, to try taking some Tylenol to bring it back down.
We also explained that Karen was nauseous most of the two weeks. While she started to feel better Sunday - four days after she finished with the pump - and was pretty good Monday, she was nauseous and weak again by Tuesday night. It wasn't until this Friday that she started to feel good once more. The PA wasn't happy to hear this or how little Karen had been eating. So Karen is going to get something in addition to the other anti-nausea medication during chemo to help with the nausea, and something extra when she comes in to have the pump removed on Wednesdays. She also increased her dosage of ondansetron (Zofran).
We didn't notice until later that the Zofran had been "increased" to from 4 mg every 4 hours, to 8 mg every 8 hours. It works by blocking the receptors in the brain that receive the signal telling your body to be nauseous, so they recommended, rather then waiting till she's starting to feel nauseous, or before a meal as we had been doing, to just take it 3 times a day, the same time, every day, so it would constantly be in her system.
From there we found some seats in the chemotherapy room. The first thing they do when you sit down, aside from access your port, is blood work. They run a complete blood count to check your blood cell levels since chemotherapy can mess with them. While both her white and red blood cell counts were low, it was the white blood cell count that really seemed to concern them. They said if it were any lower they'd have to delay things a week. They ran some more blood tests and finally decided she would be OK for chemo.
The steroid they gave her last time didn't give her that boost of energy this time. They said the extra anti-nausea medication would knock her out, which leads me to believe it's actually lorazepam (Ativan). It's normally for anxiety, but off label it's used as an anti-nausea medication. A couple times when Karen was having trouble with nausea at Mayo Clinic they told her if she were anxious she could get Ativan which would also help with nausea. And then they'd ask if she were anxious. But she almost always said no. I wonder now if it was just some sort of technicality. When she did get it at Mayo Clinic, it made her drowsy like this.
Her cold sensitivity started much sooner this time, and she says she's more sensitive this time, and the effects last longer. Even just touching a cold door knob can set it off, but to be fair, I think it's much colder now. And also like last time, her hands are cramping and it hurts in her jaw and neck when she chews things. Water has that same bad taste as well. She hasn't had any trouble with nausea but if I recall correctly, it didn't get bad until after the pump was removed. She also didn't get the hiccups last time until then as well. I'm not sure if these things will start happening sooner though, or if it will follow the same pattern every time.
When we got home she ate a little bit of food but was having trouble staying awake and went to bed. She slept most of the day but got up a bit in the evening long enough to eat and get another migraine. Once again she had to take the maximum dosage of her anti-migraine medication to get rid of it, which also tends to make her sleepy. So that was it for her Monday. I assume she'll sleep through most of Tuesday and Wednesday as well, since she did last time. She has an appointment tomorrow with her general care physician, but I'm not sure she's going to be up for it. I don't think we had the chemo schedule fully planned out yet when the appointment was scheduled. I guess we'll see.
Thursday, November 21, 2013
One Down
So yesterday, about 12:30 pm, the pump beeped to let us know it had finished. Karen was napping, but got up and clamped the tube from her port and turned the pump off. They told us to just come in whenever it's done. It took us about 30 minutes to get ready and another 30 minutes to get to Arizona Oncology. We only waited several minutes before they took us back and removed the pump.
To follow up from the last post, food hasn't been bland, so dinner that first night was probably just boring. The taste of water has pretty much returned to normal since this morning. The cold sensitivity is starting to fade already, but the whole time she was on the pump, if she touched something too cold it burns and tingles, and if she drank something cold it felt painfully cold down the back of her throat. If she wants a drink of filtered water from the tap in the middle of the night when the pipes are coldest, she has to warm it to room temperature in the microwave.
It was Pie Rush Wednesday at Village Inn, so after the pump was removed, we stopped for fries and a slice of French Silk Pie. She enjoyed the fries but got full before getting to the pie and decided to just take it home; this might have been better with her cold sensitivity anyway. The Village Inn is adjacent to a Tutor Time who was busy towing someone who parked in one of their designated parking spots, even though it was a handicap spot. The manager put a sign up on the door to let other customers knows that Tutor Time was towing anyone parking in any of their designated parking spots and that they had no control over the situation. I still can't get over them towing a car with handicap plates parked in one of their handicap spots.
The fries, which are normally quite safe, came out of her stoma quite quickly, nearly as whole as they were when they went in. Her stomach acid seemed to eat away at the wax ring much quicker than it normally would and was a bit painful. So this is diarrhea with a stoma, slightly better than diarrhea without one. While there would be no need to rush to the toilet or anything, she did get dehydrated and felt quite sluggish. Although, to be fair, she felt quite sluggish most of the time she was on the pump.
While she did have some energy Monday, she slept a lot both yesterday and the day before. She also had a pretty bad migraine yesterday. She had to take two doses of her migraine medication to get rid of it, and as I mentioned before, she doesn't like how she feels when she has to do that. Headaches are a possible side effect, but it's going to be rough if it brings on migraines every time.
One side effect they didn't tell us about is hiccups! They didn't start until after the pump was removed, but she seems to be getting them more frequently as time goes on. The hiccups seem to annoy her, but she says it's not that bad, and she can control them well enough.
Before the big surgery, when we had asked if they were going to do chemotherapy afterwards, they said it depends how "well" things go with the surgery. So when they told us the surgery went well, we thought maybe there'd be little to no chemo. But it turns out we interpreted the message backwards, if the surgery went well then she's strong enough for chemo - perhaps if they couldn't remove all the cancer they'd opt out of chemo and just let her die as peacefully as possible? I don't know. When we asked how long they would want her to be on chemotherapy, they told us 6 to 12 months, again depending on how "well" it's going. Initially we thought that meant if things go well, they'll do the shorter treatment, but, like before, it sounds like we got it backwards. Doing "well" means the chemo is preventing new tumors from growing and she's healthy enough for more chemo. So, if everything goes "well," we're looking at 12 months of chemotherapy.
She's had but one treatment, and is already saying she doesn't want to do chemotherapy anymore. I asked if it was worse than she expected, and she said no, but she had expected it to be pretty bad. The doctors - and everyone else we talk to - warn us that it gets worse over time. So I'm not sure if this first session was bad enough on it's own, or if she's just trying to imagine it getting worse. We seem to have come to an agreement, and she will continue, but I hope it's worth it for her in the end.
To follow up from the last post, food hasn't been bland, so dinner that first night was probably just boring. The taste of water has pretty much returned to normal since this morning. The cold sensitivity is starting to fade already, but the whole time she was on the pump, if she touched something too cold it burns and tingles, and if she drank something cold it felt painfully cold down the back of her throat. If she wants a drink of filtered water from the tap in the middle of the night when the pipes are coldest, she has to warm it to room temperature in the microwave.
The fries, which are normally quite safe, came out of her stoma quite quickly, nearly as whole as they were when they went in. Her stomach acid seemed to eat away at the wax ring much quicker than it normally would and was a bit painful. So this is diarrhea with a stoma, slightly better than diarrhea without one. While there would be no need to rush to the toilet or anything, she did get dehydrated and felt quite sluggish. Although, to be fair, she felt quite sluggish most of the time she was on the pump.
While she did have some energy Monday, she slept a lot both yesterday and the day before. She also had a pretty bad migraine yesterday. She had to take two doses of her migraine medication to get rid of it, and as I mentioned before, she doesn't like how she feels when she has to do that. Headaches are a possible side effect, but it's going to be rough if it brings on migraines every time.
One side effect they didn't tell us about is hiccups! They didn't start until after the pump was removed, but she seems to be getting them more frequently as time goes on. The hiccups seem to annoy her, but she says it's not that bad, and she can control them well enough.
Before the big surgery, when we had asked if they were going to do chemotherapy afterwards, they said it depends how "well" things go with the surgery. So when they told us the surgery went well, we thought maybe there'd be little to no chemo. But it turns out we interpreted the message backwards, if the surgery went well then she's strong enough for chemo - perhaps if they couldn't remove all the cancer they'd opt out of chemo and just let her die as peacefully as possible? I don't know. When we asked how long they would want her to be on chemotherapy, they told us 6 to 12 months, again depending on how "well" it's going. Initially we thought that meant if things go well, they'll do the shorter treatment, but, like before, it sounds like we got it backwards. Doing "well" means the chemo is preventing new tumors from growing and she's healthy enough for more chemo. So, if everything goes "well," we're looking at 12 months of chemotherapy.
She's had but one treatment, and is already saying she doesn't want to do chemotherapy anymore. I asked if it was worse than she expected, and she said no, but she had expected it to be pretty bad. The doctors - and everyone else we talk to - warn us that it gets worse over time. So I'm not sure if this first session was bad enough on it's own, or if she's just trying to imagine it getting worse. We seem to have come to an agreement, and she will continue, but I hope it's worth it for her in the end.
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