The CT scan showed a moderate to high grade bowel obstruction with a visible transition point. The "visible transition point" just means they can pinpoint the exact spot of the blockage, which is very helpful if they have to go in to fix the blockage with surgery. Surgery would normally be considered at this point but due to all the abdominal surgeries Karen's had in the past, scar tissue is holding everything together and it'd be hard to get/cut through to the blockage. So, we're back to the old waiting game. Karen's been admitted and they found her a room. I imagine this will take a few days to work through.
They finally put an NG tube in her nose around 3pm. Based on past experiences I felt this should have been done much sooner. They were giving her very strong pain medication - hydromorphone (Dilaudid) - but it was barely helping at all. I even felt the nurse was suspicious of Karen's claims of pain, at least until the CT results came back. When she'd be hit with a wave of pain, it'd spike up into the 8 to 10 range, and would hover around a 5 in between. The amount of time in between those waves of pain has also increased significantly, from once every two to five minutes to once or twice an hour. And the although she's still hovering around a pain level of 4, the waves of pain are less severe. They were also giving her a lot of medication to help with nausea. It's been a couple hours now since she's had the NG tube in and her nausea has vanished completely.
I had mentioned an NG tube shortly after we were admitted, but Karen really hates having them shoved down her nose and asked me not to bring it up again. However, when it finally happened, the nurse did an excellent job inserting the tube. The process was pretty much pain free. By far the easiest NG tube Karen's ever had inserted. Hopefully this experience along with how much it seems to have helped will make her more comfortable with the idea of NG tubes in the future.
Tuesday, January 10, 2017
Another Obstruction?
Karen's back in ER again. This seems to be another intestinal obstruction, but it seems to be a lot more painful this time - either that or the nurse is just making a big deal about the pain meds. To my recollection it does seem like it's being given more frequently. This makes me a little concerned that this might be a much worse blockage than we've had in the past.
Karen had a bit of pain around 1 in the morning, but just enough to take naproxen (Aleve). She began to have some serious pain about 4 am, and an hour or two after that she became nauseous. We figured at this point there was probably some sort of blockage, but Karen wanted to wait and see if it would improve on it's own if she just went onto a liquid diet. We didn't get a chance to try it out because the pain became too much and we decided to go into ER. We arrived at Mayo Clinic Hospital a little after 9.
The way they usually check for a blockage is with a CT scan of the abdomen. While we got into a room very quickly, there was a very long delay in getting the CT scan - several hours. The contrast they make you drink before the CT scan has gotten things moving again for Karen at least once in the past, but due to her nausea they decided to skip it this time. We're still waiting on the results of the CT. It seems strange to me that they haven't put an NG tube in yet, this might be due to the long delay on the CT scan and the resulting CT scan review, but I believe it was something they have always done shortly after we've come in with a blockage. I guess they just aren't sure it's a blockage? Or maybe they aren't sure of what kind of blockage it is.
Karen had a bit of pain around 1 in the morning, but just enough to take naproxen (Aleve). She began to have some serious pain about 4 am, and an hour or two after that she became nauseous. We figured at this point there was probably some sort of blockage, but Karen wanted to wait and see if it would improve on it's own if she just went onto a liquid diet. We didn't get a chance to try it out because the pain became too much and we decided to go into ER. We arrived at Mayo Clinic Hospital a little after 9.
The way they usually check for a blockage is with a CT scan of the abdomen. While we got into a room very quickly, there was a very long delay in getting the CT scan - several hours. The contrast they make you drink before the CT scan has gotten things moving again for Karen at least once in the past, but due to her nausea they decided to skip it this time. We're still waiting on the results of the CT. It seems strange to me that they haven't put an NG tube in yet, this might be due to the long delay on the CT scan and the resulting CT scan review, but I believe it was something they have always done shortly after we've come in with a blockage. I guess they just aren't sure it's a blockage? Or maybe they aren't sure of what kind of blockage it is.
Monday, November 28, 2016
Radiation Cancled
The nurse called both Friday and this morning to check on Karen. By the weekend things had finally settled back down to the point where Karen felt she should be taking laxatives again, but it turned out to be a little too soon. Nonetheless, by Monday she did feel things were where they should be. This turned out not to be good enough for our radiation oncologist, who canceled the remaining treatments. He must have been expecting a faster recovery. We were both disappointed this was the end of the radiation treatment.
It feels like we almost never get to finish anything we start. At Mayo, we've seen - actually heard - a lot of patients having a little party/song put on by the staff when they finish a long series of treatments. It's not a food and presents kind of thing, but it is a celebration. I doubt it would have meant much to Karen or me, but not having such a celebration weighs on me. Every time I hear it happening off in the distance it makes me think of all the things we've had canceled early. This includes Karen's first series of chemo treatments, the short run with Xeloda, the clinical trials, and now the radiation. Of course it's good there's always someone watching out for Karen and stopping things when the costs outweigh the benefits, but it still feels disappointing when it happens unexpectedly.
It feels like we almost never get to finish anything we start. At Mayo, we've seen - actually heard - a lot of patients having a little party/song put on by the staff when they finish a long series of treatments. It's not a food and presents kind of thing, but it is a celebration. I doubt it would have meant much to Karen or me, but not having such a celebration weighs on me. Every time I hear it happening off in the distance it makes me think of all the things we've had canceled early. This includes Karen's first series of chemo treatments, the short run with Xeloda, the clinical trials, and now the radiation. Of course it's good there's always someone watching out for Karen and stopping things when the costs outweigh the benefits, but it still feels disappointing when it happens unexpectedly.
Wednesday, November 23, 2016
Third Week of Radiation
Over the weekend the frequency with which Karen had to go to the bathroom continued to increase, and by Tuesday she was going roughly once an hour. The radiation oncologist said radiation can cause this, but it shouldn't be happening at this dosage. He also said 30 units (Gy) of radiation was planned over the 15 treatments, and we are only at 22, whereas intestinal distress is pretty much unheard of with less than 45. He thinks this may be the body warning us the radiation is affecting the intestines in an unexpected way. His biggest concern seems to be that of long term side effects.
So he put the radiation treatments on hold. Mayo is closed for Thanksgiving anyway, so we weren't going to get radiation Thursday, but we will be skipping Wednesday and Friday. This leaves us at 11 of 15 treatments. If everything calms down then we'll finish the remaining 4 treatments starting on Monday next week. If not, then the doctor feels it's likely we've done enough treatments to mitigate at least some of the pain. We talked about other options, such as treating just the most painful spot, but since we don't know which area is causing the problem we can't be sure we wouldn't end up doing more harm than good. Ideally things will just settle down so we can finish.
So he put the radiation treatments on hold. Mayo is closed for Thanksgiving anyway, so we weren't going to get radiation Thursday, but we will be skipping Wednesday and Friday. This leaves us at 11 of 15 treatments. If everything calms down then we'll finish the remaining 4 treatments starting on Monday next week. If not, then the doctor feels it's likely we've done enough treatments to mitigate at least some of the pain. We talked about other options, such as treating just the most painful spot, but since we don't know which area is causing the problem we can't be sure we wouldn't end up doing more harm than good. Ideally things will just settle down so we can finish.
Saturday, November 19, 2016
Second Week of Radiation
This last week of radiation turned out to be a lot harder than the first. The issue seems to be that the tumor sites are getting inflamed from the radiation and causing more pain. We had been warned about this but we didn't realize it would be significantly more painful. Tuesday night Karen started to feel more of an aching on her left side. When she got up in the morning there was a sharp pain upon moving. She said it felt like something inside her was tearing. At certain times standing up was painful enough to make her double over and gasp for air. They upped her pain medication by a significant amount when we went in that day. 50% to be exact. Karen felt like that might be a bit much and wanted to try out just a 25% increase. By the end of the week she was on the full 50% increase and wondering if it was enough. The increase in dosage has helped with the dull aches which also accompanied the new pains, but they don't seem to help a lot with the sharp pains that hit her at random times when getting out of bed or standing up. The left side is still worse than the right, but it does seem to be affecting both sides.
The only bright side to this pain is for once it actually is the cancer dying that's causing the pain. Something we've hoped was the case in the past, but turned out not to be. Since these tumors are near the surface we've decided to try a menthol rub like Icy Hot. If that doesn't work we want to try the lidoderm patches that worked so well with her localized pain the past. Her fatigue isn't getting any worse; unfortunately, she still has energy but can't do much without the fear of hurting. She's even finding herself awake at night when she wants to be sleeping. We've heard the radiation can also cause diarrhea, but it only seems to be balancing out the constipating effects of all this new pain medication. She has been taking fewer laxatives to stay regular, but it's yet to cause a problem.
The only bright side to this pain is for once it actually is the cancer dying that's causing the pain. Something we've hoped was the case in the past, but turned out not to be. Since these tumors are near the surface we've decided to try a menthol rub like Icy Hot. If that doesn't work we want to try the lidoderm patches that worked so well with her localized pain the past. Her fatigue isn't getting any worse; unfortunately, she still has energy but can't do much without the fear of hurting. She's even finding herself awake at night when she wants to be sleeping. We've heard the radiation can also cause diarrhea, but it only seems to be balancing out the constipating effects of all this new pain medication. She has been taking fewer laxatives to stay regular, but it's yet to cause a problem.
Saturday, November 12, 2016
First Week of Radiation
Karen's first week of radiation was so mild I'd considered not posting about it at all. We started Tuesday because Karen had been hoping to attend a particular charitable event on Monday. But she just felt too bad to go. However, as the week went on and we were further away from her last day of chemotherapy, she continued to improve. My biggest concern over starting radiation was fatigue, but by the end of this first week she has more energy than I've seen in awhile. The new pain meds seem to be helping a lot and aren't having the same lethargic effect on Karen that she had when on this dose before. Perhaps she has built up some tolerance.
I suggested she treat the areas where we're expected to see the sunburn‑like skin irritation as if it were already there, and to keep lotion and ointment on the areas. Even though we can't see any damage after these first treatments there's no question that damage is being done. So we'll see if that pays off in the long run. They did tell us we won't begin to see these kinds of side effects until we're 5 to 10 treatments in. The treatment themselves are between 5 and 10 minutes long. That's it. Scheduling still has to put us down for a 45 minute block due to what sounds like machine prep that has to be done, but Karen pretty much goes straight in after we arrive. We've never had to wait more than a few minutes.
I suggested she treat the areas where we're expected to see the sunburn‑like skin irritation as if it were already there, and to keep lotion and ointment on the areas. Even though we can't see any damage after these first treatments there's no question that damage is being done. So we'll see if that pays off in the long run. They did tell us we won't begin to see these kinds of side effects until we're 5 to 10 treatments in. The treatment themselves are between 5 and 10 minutes long. That's it. Scheduling still has to put us down for a 45 minute block due to what sounds like machine prep that has to be done, but Karen pretty much goes straight in after we arrive. We've never had to wait more than a few minutes.
Tuesday, November 8, 2016
First Radiation Treatment
The doctors built a 3D model of Karen's abdomen using the CT scans taken during the simulation. They measured out three beams to target the three sites. One beam treats the tumor on her left, while the other two both line up with the tumor sites on her right. It sounds like they would have wanted two beams for one area anyway, the one that's close to her small intestine. So rather than treat one of the spots separately all in one go, they are able to treat both areas with overlapping beams. This is possible because both sites are aligned with the large scar from her previous surgery. There will be some scar tissue between the two spots that may fall along the lines of the beams but there's no harm there.
This session, while shorter than simulation, was still much longer than future treatments will be. This is because they wanted to make sure everything lined up with the 3D model they made and that nothing had shifted or moved since the scans. This consists of Karen laying in the custom fit mold they had previously made and having areas measured out on her skin with a marker. They were able to feel the tumors under the skin and see that everything matched as it should. They also covered the three small marks they gave her last time with somewhat larger stickers to help line up the machines in the future. (These stickers are water resistant and should stay on just fine while bathing.) Several pieces of metal were machined to fit perfectly over her abdomin to prevent the beams from going where they shouldn't. These were also fitted to make sure they laid flat against her skin and were smooth and comfortable. There's also a blue, thicker, almost skin like material of a calculated width that they place over other areas to dampen the beams there. Everything was as planned and nothing had to be recalculated or redesigned.
There will be 15 treatments, which means three weeks of radiation. Karen's different had doctors discussed this and rather than get that third week of treatment while on chemotherapy, we'll be waiting three weeks before starting chemo again, instead of the usual two. This way, all radiation treatment will happen while she's off chemo. The first treatment itself was very quick and entirely painless. Everyone involved is very nice and overly cheerful. Karen's pretty happy with the way things are turning out.
This session, while shorter than simulation, was still much longer than future treatments will be. This is because they wanted to make sure everything lined up with the 3D model they made and that nothing had shifted or moved since the scans. This consists of Karen laying in the custom fit mold they had previously made and having areas measured out on her skin with a marker. They were able to feel the tumors under the skin and see that everything matched as it should. They also covered the three small marks they gave her last time with somewhat larger stickers to help line up the machines in the future. (These stickers are water resistant and should stay on just fine while bathing.) Several pieces of metal were machined to fit perfectly over her abdomin to prevent the beams from going where they shouldn't. These were also fitted to make sure they laid flat against her skin and were smooth and comfortable. There's also a blue, thicker, almost skin like material of a calculated width that they place over other areas to dampen the beams there. Everything was as planned and nothing had to be recalculated or redesigned.
There will be 15 treatments, which means three weeks of radiation. Karen's different had doctors discussed this and rather than get that third week of treatment while on chemotherapy, we'll be waiting three weeks before starting chemo again, instead of the usual two. This way, all radiation treatment will happen while she's off chemo. The first treatment itself was very quick and entirely painless. Everyone involved is very nice and overly cheerful. Karen's pretty happy with the way things are turning out.
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