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.
Thursday, January 22, 2015
Wednesday, January 21, 2015
Solid Food
Karen started the day with another liquid meal. When the doctors came to check on her they were pleased with how things were going and decided to advance her to a low fiber diet. They said if she were itching to get out of here she could go home as soon as today, but said they would feel better if she stayed an extra day and left Thursday instead. Karen agreed and said she'd be more comfortable taking things slow. She certainly doesn't want to trigger the blockage again and go through everything all over again.
Her liquid breakfast didn't make her feel bloated, so we were quite happy. Lunch time rolled around and they brought her another liquid only meal. The doctors had said she could have solid foods, but Karen was happy taking things slow. Then after she finished eating, they came in with a low fiber lunch. I guess the order didn't make it in time for them to cancel the first lunch, but with enough time for them to start on a second order. Oh well. She had some cooked carrots between meals and a low fiber dinner. She's handling all the food quite well, but did feel bloated after lunch and dinner. We're still hoping it's just a combination of the chemo and her stomach getting use to food again, and it doesn't sound like it will stop the doctors from releasing her tomorrow.
Since we've got such a wide range of doctors visiting her here at the hospital, they've been trying out different medications on her nausea, which has been a problem with chemo. We think one of them has given her blurry vision. Hopefully this clears up by tomorrow, but I don't think it's the kind of thing they'll hold her for. Her throat is still sore and her voice is still scratchy, but overall she's feeling a lot better. Her color looks much better too; I assume that is due to her coming off some of the stronger pain medications she's been on.
All signs point to tomorrow. They've said she can go home in the morning, but with all the paperwork they have to do for discharge, we don't really expect to leave until noon.
Her liquid breakfast didn't make her feel bloated, so we were quite happy. Lunch time rolled around and they brought her another liquid only meal. The doctors had said she could have solid foods, but Karen was happy taking things slow. Then after she finished eating, they came in with a low fiber lunch. I guess the order didn't make it in time for them to cancel the first lunch, but with enough time for them to start on a second order. Oh well. She had some cooked carrots between meals and a low fiber dinner. She's handling all the food quite well, but did feel bloated after lunch and dinner. We're still hoping it's just a combination of the chemo and her stomach getting use to food again, and it doesn't sound like it will stop the doctors from releasing her tomorrow.
Since we've got such a wide range of doctors visiting her here at the hospital, they've been trying out different medications on her nausea, which has been a problem with chemo. We think one of them has given her blurry vision. Hopefully this clears up by tomorrow, but I don't think it's the kind of thing they'll hold her for. Her throat is still sore and her voice is still scratchy, but overall she's feeling a lot better. Her color looks much better too; I assume that is due to her coming off some of the stronger pain medications she's been on.
All signs point to tomorrow. They've said she can go home in the morning, but with all the paperwork they have to do for discharge, we don't really expect to leave until noon.
Tuesday, January 20, 2015
Progress
This morning they scheduled an x-ray to look at Karen's intestines. It looked good enough for the doctors to suggest clamping her NG tube. They clamp the tube for 3 hours and then reconnect it and turn the suction back on to see how much gastric acid - stomach acid - has built up. If things are moving through very little comes out. However, if there is more, then that means things aren't moving through well. When stomach acid isn't moving through, it can quickly build up to the point where it makes you nauseous, so they will stop early if she gets nauseous.
Two and half hours into the clamping test she became very nauseous. They gave her something for the nausea and reconnected the NG tube to the suction. Almost no stomach acid came out, which means at least that much was going through. The nausea in this case was simply from the chemo. She normally gets bouts of nausea from the chemo, so that's all it was.
Less than an hour later the doctor's order came through allowing her water and ice chips. This was a little after 3pm. After a couple hours more, they ordered her a liquid dinner. It was vegetable broth, a liquid protein supplement, something jello like, and tea. She felt pretty bloated afterwards and they gave her an antacid. We were a little worried at this point because blockages often start with a bloated feeling, but everything seemed to go through. Karen thinks it was just her stomach adjusting to being used again.
She's still sore from all the cramping and bloating earlier, but it's improving. Her throat still hurts from the NG tube and her voice sounds very scratch. But all in all, she's in very good spirits. They told us that it's looking like she'll be out of here by Thursday.
Two and half hours into the clamping test she became very nauseous. They gave her something for the nausea and reconnected the NG tube to the suction. Almost no stomach acid came out, which means at least that much was going through. The nausea in this case was simply from the chemo. She normally gets bouts of nausea from the chemo, so that's all it was.
Less than an hour later the doctor's order came through allowing her water and ice chips. This was a little after 3pm. After a couple hours more, they ordered her a liquid dinner. It was vegetable broth, a liquid protein supplement, something jello like, and tea. She felt pretty bloated afterwards and they gave her an antacid. We were a little worried at this point because blockages often start with a bloated feeling, but everything seemed to go through. Karen thinks it was just her stomach adjusting to being used again.
She's still sore from all the cramping and bloating earlier, but it's improving. Her throat still hurts from the NG tube and her voice sounds very scratch. But all in all, she's in very good spirits. They told us that it's looking like she'll be out of here by Thursday.
Monday, January 19, 2015
Mechanical Blockage
We were right in thinking it was a blockage, but it appears to be a mechanical blockage - a blockage caused by a mechanical obstruction. This is what happens when your intestines get twisted or kinked. Food will still build up at a point in the intestines, but it's not due to the food. They compared the intestines to a bunch of spaghetti noodles. When you run your hand through the noodles, they are free to twist and turn and move all around. And that's normally how intestines are, free to move around inside you. However, after surgery, scar tissue can form around incisions and your intestines can adhere to that scar tissue, gluing them in place. Now when they shift around, they can become kinked like a garden hose.
With any blockage, along with the pain there is nausea and vomiting, as was the case with Karen. This is because food has no where to go but back out the way it came in. To prevent this they've inserted an NG tube into her nose and down into her stomach. This sucks out any food that may be in there along with any stomach acid, and it allows the intestines to rest. But it makes talking uncomfortable, and it's given her jaw pain and a head ache as well. Of course they can give her pain meds for that, but it's still no fun.
We've been told that about 75% of mechanical blockages resolve on their own, but the other 25% require surgery. In rare cases the blockage can actually cause parts of the intestine to die. They have a blood test they run every 6 hours to check for changes in the blood that you see when tissue death is occurring. This test has repeatedly come up negative for Karen, and they are discontinuing the test today as everything seems to be working itself out. When she first came in her belly was as hard as a rock and she was in a lot of pain. It's softened up a lot since then and it's pain level has gone way down.
That said, we aren't entirely in the clear yet, and they've let us know they want to keep Karen for another night. With the way they are talking, it sounds like it may actually end up being two or three more days, but they'll only say one more for sure. They want to be certain things resolve completely before sending her home, but that's hard to do when she's already having diarrhea and nausea from the chemo. So they are being extra cautious and not rushing anything along.
With any blockage, along with the pain there is nausea and vomiting, as was the case with Karen. This is because food has no where to go but back out the way it came in. To prevent this they've inserted an NG tube into her nose and down into her stomach. This sucks out any food that may be in there along with any stomach acid, and it allows the intestines to rest. But it makes talking uncomfortable, and it's given her jaw pain and a head ache as well. Of course they can give her pain meds for that, but it's still no fun.
We've been told that about 75% of mechanical blockages resolve on their own, but the other 25% require surgery. In rare cases the blockage can actually cause parts of the intestine to die. They have a blood test they run every 6 hours to check for changes in the blood that you see when tissue death is occurring. This test has repeatedly come up negative for Karen, and they are discontinuing the test today as everything seems to be working itself out. When she first came in her belly was as hard as a rock and she was in a lot of pain. It's softened up a lot since then and it's pain level has gone way down.
That said, we aren't entirely in the clear yet, and they've let us know they want to keep Karen for another night. With the way they are talking, it sounds like it may actually end up being two or three more days, but they'll only say one more for sure. They want to be certain things resolve completely before sending her home, but that's hard to do when she's already having diarrhea and nausea from the chemo. So they are being extra cautious and not rushing anything along.
Sunday, January 18, 2015
ER Visit
We've made a quick trip down to the ER for what we think is a blockage caused by an over correction to the diarrhea the chemo has been causing. If it's anything like the blockage we went in for in 2013, they'll give her contrast for a CT scan and that will get things moving again.
Update: Karen has been admitted to the hospital.
Update: Karen has been admitted to the hospital.
Thursday, November 20, 2014
More Chemo
We saw the oncologist again. He thinks that it would be best for Karen to do another 4 months of chemotherapy before starting on maintenance chemo. While this was on our minds, we hadn't mentioned it to the doctor. Perhaps this is normal when the initial round of chemotherapy is cut short? He warned us, however, that cancer is "very smart." It gets better at surviving the chemo after each round. And even though it doesn't seem to be shrinking the cancer, it can still slow it's growth, which will give Karen more time.
The particular regimen she will be on this time is called FOLFIRI (as opposed to the last regimen, FOLFOX). The difference being that they will be giving her irinotecan instead of oxaliplatin. This change is important because last time most of the harshest side effects - the neuropathy, intense cold sensitivity, and the extremely low blood counts - came about due to the oxaliplatin. The biggest side effect with irinotecan will be diarrhea, which isn't a comfort issue when you have an ostomy. We just have to watch Karen's hydration. A low white blood cell count is also expected. The oncologist will also be adding in bevacizumab this time. It was considered last time, but for one reason or another, was never thrown into the mix. It works by slowing the growth of new blood vessels, something that's important for tumor growth.
They will also be starting Karen off on very low dosages of everything, and slowly upping things as they see how her body responds to it all. Like last time, Karen will go home with a pump, which will administer chemo for another 46 hours. Overall, this should be an easier round of chemo than last time. Although that doesn't make Karen less nervous about it; she's really dreading starting chemo again.
The date kept changing, but we've finally settled on Friday the 21st. Mayo has a hospital that is open 7 days a week, so we can come in on Sunday to have the pump removed. Since chemotherapy is only given every other week, this puts thanksgiving, new years, and christmas on off weeks. Still, after last time, Karen isn't expecting to have much energy on her off weeks. She is also worried about having a low white blood cell count again, which she expects to limit her visiting during this time. I'm a bit more hopeful, but I've been wrong before.
The particular regimen she will be on this time is called FOLFIRI (as opposed to the last regimen, FOLFOX). The difference being that they will be giving her irinotecan instead of oxaliplatin. This change is important because last time most of the harshest side effects - the neuropathy, intense cold sensitivity, and the extremely low blood counts - came about due to the oxaliplatin. The biggest side effect with irinotecan will be diarrhea, which isn't a comfort issue when you have an ostomy. We just have to watch Karen's hydration. A low white blood cell count is also expected. The oncologist will also be adding in bevacizumab this time. It was considered last time, but for one reason or another, was never thrown into the mix. It works by slowing the growth of new blood vessels, something that's important for tumor growth.
They will also be starting Karen off on very low dosages of everything, and slowly upping things as they see how her body responds to it all. Like last time, Karen will go home with a pump, which will administer chemo for another 46 hours. Overall, this should be an easier round of chemo than last time. Although that doesn't make Karen less nervous about it; she's really dreading starting chemo again.
The date kept changing, but we've finally settled on Friday the 21st. Mayo has a hospital that is open 7 days a week, so we can come in on Sunday to have the pump removed. Since chemotherapy is only given every other week, this puts thanksgiving, new years, and christmas on off weeks. Still, after last time, Karen isn't expecting to have much energy on her off weeks. She is also worried about having a low white blood cell count again, which she expects to limit her visiting during this time. I'm a bit more hopeful, but I've been wrong before.
Thursday, October 23, 2014
Mystery Solved
Karen never quite recovered after this last surgery. She wanted to go see family and we kept planning visits but she was very lethargic and when it came down to it she just never had the energy. To make matters worse, Wednesday evening - the 15th - she got what looked like a bad spider bite on her back. The next day there were a lot more, following from her back towards her stomach along her abdomen. The looked more like flea bites now, with the first one she had gotten still looking worse than the others. Some friends visited from out of town and when she showed them, one of them was quite certain they were bed bug bites.
We compared pictures of flea bites to bed bug bites and couldn't tell the difference. I had been urging her to see a doctor since the bites had popped up and they had become so insanely itchy over the weekend that she agreed to call first thing Monday morning. Dermatology at Mayo was able to see us the same day. The doctor took one look at the bumps which had just started to blister and declared them to be shingles. Apparently it's very common for them to appear on just one side of the body and go from back to front about abdomen level. This is because the virus affects only the skin that the affected nerve supplies. Since we had been comparing pictures, it's worth mentioning the images that come up in google image search aren't nearly as bad as the outbreak Karen had.
The doctor told us that they don't typically start worrying about shingles until people get into their 60s. She said shingles are often triggered by a surgery, low immune system, stress, or an upper respiratory infection. Karen had all of these. The surgery and it's results had been a source of stress, and she got an upper respiratory infection afterwards - we assume from the tube they had put down her throat scratching it. Oh, and she's had a low immune system since the chemo. The doctor warned us that even after you get shingles, there's roughly a 10% chance of getting it again, and suggested Karen get a shingles vaccine once she's recovered from everything.
The drugs they give you to deal with the itching and nerve pain were all drugs Karen was already on due to her neuropathy. Perhaps if this weren't the case we'd have been in sooner. We were given a prescription for an antiviral, famciclovir, but were told it really works best those first 24 to 48 hours, and may not help much now. Antivirals help reduce the severity and duration of outbreaks, but famciclovir is also used in cases where someone has a weakened immune system. This is to keep the virus from spreading to other locations - it's not uncommon for shingles to spread to other nerves nearby. All things considered, this is not a bad outcome.
We compared pictures of flea bites to bed bug bites and couldn't tell the difference. I had been urging her to see a doctor since the bites had popped up and they had become so insanely itchy over the weekend that she agreed to call first thing Monday morning. Dermatology at Mayo was able to see us the same day. The doctor took one look at the bumps which had just started to blister and declared them to be shingles. Apparently it's very common for them to appear on just one side of the body and go from back to front about abdomen level. This is because the virus affects only the skin that the affected nerve supplies. Since we had been comparing pictures, it's worth mentioning the images that come up in google image search aren't nearly as bad as the outbreak Karen had.
The doctor told us that they don't typically start worrying about shingles until people get into their 60s. She said shingles are often triggered by a surgery, low immune system, stress, or an upper respiratory infection. Karen had all of these. The surgery and it's results had been a source of stress, and she got an upper respiratory infection afterwards - we assume from the tube they had put down her throat scratching it. Oh, and she's had a low immune system since the chemo. The doctor warned us that even after you get shingles, there's roughly a 10% chance of getting it again, and suggested Karen get a shingles vaccine once she's recovered from everything.
The drugs they give you to deal with the itching and nerve pain were all drugs Karen was already on due to her neuropathy. Perhaps if this weren't the case we'd have been in sooner. We were given a prescription for an antiviral, famciclovir, but were told it really works best those first 24 to 48 hours, and may not help much now. Antivirals help reduce the severity and duration of outbreaks, but famciclovir is also used in cases where someone has a weakened immune system. This is to keep the virus from spreading to other locations - it's not uncommon for shingles to spread to other nerves nearby. All things considered, this is not a bad outcome.
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