Yesterday's lunch stayed down fine, and her nausea is now under control. She started taking olanzapine when on chemotherapy to help control the nausea, and it seems to be working great in this situation as well. They've OKed a solid food diet for Karen today, but she had already eaten breakfast by this time. So far the solid food seems to be staying down and not causing any problems.
Everything else has been progressing nicely as well. She was able to get a decent amount of sleep at night again so I'm sure that helps. Her pain level is still at a 3 out of 10 but she's using a lot less hydromorphone. She has been taking some of her medications orally, which they like to do before they send you home. She still has the PCA pump because they expect the pain level to increase as she begins to move around. Her "bed rest" order has been removed and they are now encouraging her to walk around bit. Everything related to her digestion seems to be working again, but this also means they expect her to be using the bathroom "8 to 10 times a day." So she'll get some moving around from that.
Those first 24 hours of nausea and vomiting weren't conducive to healing and was part of the reason she was confined to bed for that time. We're still happy with the progression, but it looks like it might end up being closer to 5 days than the 2 or 3 the doctors had hoped would be possible. Everyone always says how healthy she looks, even when she's often not feeling well at the time. While at first we were surprised, it's happened so often that we now find it funny when we meet a doctor for the first time and they say, "you look so much better than you sound on paper." And it's not just doctors, it's the nurses, friends, and family. So it's easy to overestimate her recovery speed. We aren't disappointed with the recovery speed.
Saturday, February 13, 2016
Friday, February 12, 2016
Day After / PCA Pump Rant
Karen has been pretty nauseous since the surgery. She hasn't been able to keep anything down, and the heaving from vomiting really hurts her stomach. That said, her pain level has come down. She woke up from her surgery with a pain level of 8 out of 10, but after a couple hours was around a 4 or 5. They were able to get it down to around a 3 today, but heaving always bumps the pain level back up to a 5 or 6. She has recently had a little bit of broth and that's stayed down. So hopefully things are starting to turn around. Her resting heart rate is still in the 90s - I'm not sure what that's about.
As they have done previously, they have Karen on a PCA pump - a Patient Controlled Anesthesia pump. It is set to administer a small amount of painkiller - hydromorphone in this case - once every 8 minutes, but only if you hit the button. The issue we had with this before was once she would finally get her pain level low enough to sleep, she'd soon be woken up by the pain. Last night her pain level was settling around a 5 or 6 when she didn't push the button, and once they stopped taking vitals the pain alone wasn't enough to wake her, so she was able to get some sleep. Today it's settling around a 4 or 5 when she's not hitting the button. We're now at the point where she can get her pain under control fairly quickly after waking, with just one or two doses from the PCA pump.
But I did want to rant about this for a minute because this was one of the most frustrating things for us in the past, and I don't think I ever succeeded in fully explaining it. After falling asleep, Karen would be woken up by her pain, which was around an 8 out of 10. Then she'd have to play catch up, 8 minutes at a time. And with pain medication it's always easier to stay ahead of the pain than try to bringing existing pain under control, especially when you can only take it slowly in small increments. And when she'd get really tired and fall into a half awake state, she could get to a point where her pain level was still pretty high but low enough to sleep. So she would only miss hitting the button once or twice before the pain would wake her up again. She would go all night and into the day with completely broken sleep, awake for a button press or two, and then asleep for 10 to 20 minutes. And they'd come in during the day and tell her she should be sleeping at night, not during the day! We had complained about it but it was suggested she couldn't sleep at night because she was half asleep during the day and got her day-night cycles reversed. We were also told if they used a constant drip with anesthesia this strong, she could easily overdose and stop breathing. The PCA pump prevents that because you'll knock yourself out before it gets to that point. (But aren't all these machines monitoring that? Surely they wouldn't have to wait until you stopped breathing before adjusting it?) I'm not sure the problem was at all related to her day-night cycle, and I see the advantage to the PCA pump when your pain level is settling in a range that won't wake you from your sleep, but when your pain is anything more, it just functions like a sleep deprivation torture device.
As they have done previously, they have Karen on a PCA pump - a Patient Controlled Anesthesia pump. It is set to administer a small amount of painkiller - hydromorphone in this case - once every 8 minutes, but only if you hit the button. The issue we had with this before was once she would finally get her pain level low enough to sleep, she'd soon be woken up by the pain. Last night her pain level was settling around a 5 or 6 when she didn't push the button, and once they stopped taking vitals the pain alone wasn't enough to wake her, so she was able to get some sleep. Today it's settling around a 4 or 5 when she's not hitting the button. We're now at the point where she can get her pain under control fairly quickly after waking, with just one or two doses from the PCA pump.
But I did want to rant about this for a minute because this was one of the most frustrating things for us in the past, and I don't think I ever succeeded in fully explaining it. After falling asleep, Karen would be woken up by her pain, which was around an 8 out of 10. Then she'd have to play catch up, 8 minutes at a time. And with pain medication it's always easier to stay ahead of the pain than try to bringing existing pain under control, especially when you can only take it slowly in small increments. And when she'd get really tired and fall into a half awake state, she could get to a point where her pain level was still pretty high but low enough to sleep. So she would only miss hitting the button once or twice before the pain would wake her up again. She would go all night and into the day with completely broken sleep, awake for a button press or two, and then asleep for 10 to 20 minutes. And they'd come in during the day and tell her she should be sleeping at night, not during the day! We had complained about it but it was suggested she couldn't sleep at night because she was half asleep during the day and got her day-night cycles reversed. We were also told if they used a constant drip with anesthesia this strong, she could easily overdose and stop breathing. The PCA pump prevents that because you'll knock yourself out before it gets to that point. (But aren't all these machines monitoring that? Surely they wouldn't have to wait until you stopped breathing before adjusting it?) I'm not sure the problem was at all related to her day-night cycle, and I see the advantage to the PCA pump when your pain level is settling in a range that won't wake you from your sleep, but when your pain is anything more, it just functions like a sleep deprivation torture device.
Thursday, February 11, 2016
Quick Surgery Follow Up
The surgery lasted roughly 3 hours and turned out well. The doctor said the mass was larger than he had hoped, but everything went as expected and was happy with the results. They removed the mass from her stomach and a good amount of muscle it was attached to, put a mesh inside her to cover the hole left by the tumor and the muscle it was intertwined with, and reversed her ileostomy. They plan on keeping her for 2 to 3 days, but it may be upwards of 5. Things may return to normal quickly over a week or two, or it may take several months. Karen's says either way she's happy about it. Her ileostomy limited so much of what she could eat, and prevented her body from absorbing some of the nutrients from what she could eat. She's hoping that in addition to being pain free, she will now have better energy levels and less fatigue.
Wednesday, February 10, 2016
Another Surgery
Last month, on the 10th, we met with the surgeon. He didn't have any real surprises for us. He wasn't happy Karen had to use so much pain medication due to the cancer in her abdomen, in and around her stoma, and said he could take out that growth. It's still right near the surface, and the other spots seem to be fairly stable, so he wouldn't go digging for them. This would be a fairly minor surgery compared to what she had been through in the past, but for any surgery she'd have to be off chemo for at least 4 weeks.
He told us the longer we wait to have it removed, the more it would grow, and the more surrounding tissue would have to be removed with it. Suggesting that if it does become unmanageable with pain meds in the future, it's possible to have grown so much that surgery might not be an option. As it is now, some stomach muscle might have to be removed with the tumor, and the intestines forming the stoma itself will have to be resected (recut). But he never said we "needed" the surgery, or even that we "should" have the surgery. He was very careful to just present it as an option, and to leave the decision entirely up to us. It's nice to have full control over important decisions when your life often feels so out of control.
I asked about what the oncologist mentioned, HIPEC, and he said it could be done again after a debulking surgery where they try to remove spots from all around, but this wouldn't be anything so drastic. I also asked if removing stomach muscle would make someone more likely to get a hernia. The answer is yes, but if much of the muscle had to be removed, he'd just put in a mesh right then and there to prevent any possible future hernias.
We were both leaning towards a having the surgery, so we opted to take a break from chemo for 4 weeks and meet with the surgeon again in a month. And that day was yesterday. We have decided to go ahead with the operation and had already contacted scheduling, telling them it was ok to schedule us for surgery after our appointment with the doctor. He agrees with our decision, and thinks it's best to do it now. The expected stay is five days, but depending on what they end up doing with her intestines, it could take up to a month or two to feel herself again.
They have us scheduled for tomorrow, but we don't know when yet. We have to call after business hours today to get a check-in time. This part reminds me of jury duty, where you have to call the night before to see if you've been excused. I guess if someone with an urgent need walked in today, they could be scheduled for tomorrow and push our surgery off to another day. Or maybe cancellations could move us earlier into the day.
So far when we've mentioned another operation to people, they seem to feel sorry for Karen. "Aww, I'm so sorry." But this growth is something we've noticed for a while now, even before we went on our long trip. In fact, Karen first noticed pain in that area over a year ago when she started chemo again. I remember her mentioning it and saying, "I hope it's just the cancer crying out in pain as it's dying." But we both suspected otherwise. This surgery will be a conclusion to that long and building concern, and we're both glad it's happening.
He told us the longer we wait to have it removed, the more it would grow, and the more surrounding tissue would have to be removed with it. Suggesting that if it does become unmanageable with pain meds in the future, it's possible to have grown so much that surgery might not be an option. As it is now, some stomach muscle might have to be removed with the tumor, and the intestines forming the stoma itself will have to be resected (recut). But he never said we "needed" the surgery, or even that we "should" have the surgery. He was very careful to just present it as an option, and to leave the decision entirely up to us. It's nice to have full control over important decisions when your life often feels so out of control.
I asked about what the oncologist mentioned, HIPEC, and he said it could be done again after a debulking surgery where they try to remove spots from all around, but this wouldn't be anything so drastic. I also asked if removing stomach muscle would make someone more likely to get a hernia. The answer is yes, but if much of the muscle had to be removed, he'd just put in a mesh right then and there to prevent any possible future hernias.
We were both leaning towards a having the surgery, so we opted to take a break from chemo for 4 weeks and meet with the surgeon again in a month. And that day was yesterday. We have decided to go ahead with the operation and had already contacted scheduling, telling them it was ok to schedule us for surgery after our appointment with the doctor. He agrees with our decision, and thinks it's best to do it now. The expected stay is five days, but depending on what they end up doing with her intestines, it could take up to a month or two to feel herself again.
They have us scheduled for tomorrow, but we don't know when yet. We have to call after business hours today to get a check-in time. This part reminds me of jury duty, where you have to call the night before to see if you've been excused. I guess if someone with an urgent need walked in today, they could be scheduled for tomorrow and push our surgery off to another day. Or maybe cancellations could move us earlier into the day.
So far when we've mentioned another operation to people, they seem to feel sorry for Karen. "Aww, I'm so sorry." But this growth is something we've noticed for a while now, even before we went on our long trip. In fact, Karen first noticed pain in that area over a year ago when she started chemo again. I remember her mentioning it and saying, "I hope it's just the cancer crying out in pain as it's dying." But we both suspected otherwise. This surgery will be a conclusion to that long and building concern, and we're both glad it's happening.
Thursday, December 10, 2015
Growth
Karen had a CT scan yesterday evening, and today we saw the oncologist. He confirmed what we had already suspected, the cancer around Karen's abdomen has grown since the last scan, since we took off for our trip. The area has become increasingly tender for her, and she has to be careful when bending over to pick something up or stretching to reach something, as bending and stretching hurts the area. The oncologist said there weren't any notable changes anywhere else, but we've also noticed her energy levels and fatigue seem to be getting worse, and she sometimes has random bouts of nausea. We had expected this to change while off chemotherapy, but it seems to be about the same.
The doctor suggested maybe having another surgery to remove the mass that is growing in her abdomen, and if she's going in for surgery, maybe another HIPEC. The surgeon who performed it last time seemed to think HIPEC was a one shot thing, and wouldn't be something we could do again, but perhaps something about the situation has changed, or perhaps new technology or studies have changed this. The oncologist said he would contact our surgeon and get his opinion. In the past we've found the surgeon to be very straightforward and honest. He manages to be both polite and blunt at the same time. So we've decided to make an appointment with him either way, just to hear his opinion on things.
As you can imagine Karen isn't excited about the idea of another surgery. The surgeon had said he only foresaw one more operation in her future, and worries the scar tissue from that surgery will make another surgery impractical. He says scar tissue is "sticky" and will adhere to her organs and intestines. Karen worries if it's put off too long, she might not be healthy enough for it. She's also worried, if it's put off, that the cancer will stick to more of her intestines and take more of them with it when it's finally removed. It's a lot to think about, and unfortunately, thinking about it doesn't do much good. Hopefully she can keep her mind on other things.
The doctor suggested maybe having another surgery to remove the mass that is growing in her abdomen, and if she's going in for surgery, maybe another HIPEC. The surgeon who performed it last time seemed to think HIPEC was a one shot thing, and wouldn't be something we could do again, but perhaps something about the situation has changed, or perhaps new technology or studies have changed this. The oncologist said he would contact our surgeon and get his opinion. In the past we've found the surgeon to be very straightforward and honest. He manages to be both polite and blunt at the same time. So we've decided to make an appointment with him either way, just to hear his opinion on things.
As you can imagine Karen isn't excited about the idea of another surgery. The surgeon had said he only foresaw one more operation in her future, and worries the scar tissue from that surgery will make another surgery impractical. He says scar tissue is "sticky" and will adhere to her organs and intestines. Karen worries if it's put off too long, she might not be healthy enough for it. She's also worried, if it's put off, that the cancer will stick to more of her intestines and take more of them with it when it's finally removed. It's a lot to think about, and unfortunately, thinking about it doesn't do much good. Hopefully she can keep her mind on other things.
Wednesday, March 18, 2015
Marriage
Marriage is what brings us together today. Karen and I are getting married this Friday. We had been waiting for a good time to get married, but grew wary of waiting. So we decided to just go get married at the courthouse. Then, when Karen were feeling up to it, we could have a proper wedding and reception.
We told our immediate families about the decision and they all wanted to be there. The courthouse doesn't allow us to have that many guests, and we could have just refused them, but there is a chance Karen will never quite feel up to doing more. So we are going to have a small outdoor wedding at a local prayer garden and we'll go to a restaurant for food after. Hopefully there will be a chance to have a bigger reception at a later date, but if not, then at least we had this with our family.
We told our immediate families about the decision and they all wanted to be there. The courthouse doesn't allow us to have that many guests, and we could have just refused them, but there is a chance Karen will never quite feel up to doing more. So we are going to have a small outdoor wedding at a local prayer garden and we'll go to a restaurant for food after. Hopefully there will be a chance to have a bigger reception at a later date, but if not, then at least we had this with our family.
Thursday, January 22, 2015
Discharged
A lot of different doctors make rounds through the hospital. We get visited by the the oncology team, the palliative care team, and general surgery. To keep things from being total mayhem, each patient has one doctor who has final say in which medical treatments they recommend. For Karen, this has always been the doctor who performed her first surgery at Mayo. However, this time he was out of the country, so she had someone different this time. The end result of all of this is our doctor was paged and ran off to surgery before she could discharge Karen. While everyone else seemed to agree she was good to go, she wasn't discharged until 3pm.
It might sound bad, but I think the extra time made us feel a bit more comfortable about going home since Karen had more experience with solid food. She got to eat both breakfast and lunch at the hospital, and they both went smoothly. There's still bloating afterwards, which honestly makes me a little nervous. But we've never dealt with a mechanical blockage before, and the doctors don't seem overly concerned about it, so maybe it's par for the course. There's also still some pain near her diaphragm on the left side. No one is really sure if it's related to the blockage, the chemo, or even the cancer itself. When we left her vision was still a bit blurry, but better than the day before. And now at the end of the day, it has cleared up entirely. We're not sure which medication caused it, but we have our suspicions. Shortly before her vision went blurry she was given chlorpromazine (Thorazine) for nausea, and that's one of the new medications we were trying out.
The doctors had said she would have to "change her diet." And that just sounds ominous. Karen in particular got the impression there would have to be permanent changes, but it was never brought up again. They did put her on a low fiber diet, but that's not really the type of diet you stay on long term. We asked the nurse if the discharge instructions said anything about how long Karen was suppose to stay on a low fiber diet, and she said no, but that when she sees it after something like this, it's typically two weeks. A little research on Mayo Clinic's website suggests you slowly start added fiber back into your diet as your digestive system returns to normal. We'll have to call to find out more, but this last bit sounds the most reasonable.
When you look into the diet itself, the low fiber diet sounds quite unhealthy. The more cooked or processed the food is, the lower the fiber. So raw carrots, that's a no no. Canned carrots? That's ok. Whole wheat bread? Nope. Donuts? You bet. Beans? No. Potato chips? Yes. Actually, it almost sounds like a diet you could enjoy. Almost.
It might sound bad, but I think the extra time made us feel a bit more comfortable about going home since Karen had more experience with solid food. She got to eat both breakfast and lunch at the hospital, and they both went smoothly. There's still bloating afterwards, which honestly makes me a little nervous. But we've never dealt with a mechanical blockage before, and the doctors don't seem overly concerned about it, so maybe it's par for the course. There's also still some pain near her diaphragm on the left side. No one is really sure if it's related to the blockage, the chemo, or even the cancer itself. When we left her vision was still a bit blurry, but better than the day before. And now at the end of the day, it has cleared up entirely. We're not sure which medication caused it, but we have our suspicions. Shortly before her vision went blurry she was given chlorpromazine (Thorazine) for nausea, and that's one of the new medications we were trying out.
The doctors had said she would have to "change her diet." And that just sounds ominous. Karen in particular got the impression there would have to be permanent changes, but it was never brought up again. They did put her on a low fiber diet, but that's not really the type of diet you stay on long term. We asked the nurse if the discharge instructions said anything about how long Karen was suppose to stay on a low fiber diet, and she said no, but that when she sees it after something like this, it's typically two weeks. A little research on Mayo Clinic's website suggests you slowly start added fiber back into your diet as your digestive system returns to normal. We'll have to call to find out more, but this last bit sounds the most reasonable.
When you look into the diet itself, the low fiber diet sounds quite unhealthy. The more cooked or processed the food is, the lower the fiber. So raw carrots, that's a no no. Canned carrots? That's ok. Whole wheat bread? Nope. Donuts? You bet. Beans? No. Potato chips? Yes. Actually, it almost sounds like a diet you could enjoy. Almost.
Subscribe to:
Posts (Atom)