No Progress

There's been no progress with the blockage. Although her abdomen pain has completely dissipated. She didn't need any extra pain medication through the night and she's remained pain free throughout the day. Well, except for the irritation in her throat from the NG tube, but that's extremely minor compared to the abdominal pain she was in yesterday. She seems to be in good spirits.

She didn't sleep all that much last night. They gave her the steroid Dexamethasone in the evening to try and reduce the inflammation in her intestines. It can also make you feel energized, and kept her up until past midnight despite not sleeping the night before. (Today it was given in the morning.) When she did go to sleep, all the medications and vitals checks weren't lined up so she kept getting woken up every couple hours. Certain medications are prescribed with a time they must be given, and there are a bunch of different teams working with you, so the medication times don't always line up. But once we've been there a day or two they get everything adjusted pretty well. And since she's off the strong IV pain meds they don't have to take vitals every two hours anymore. So hopefully tonight will be better.

The doctors have been throwing around the term frozen abdomen. This is when your intestines gel into a solid mass, as opposed to how they normally are, free flowing like a bowl of spaghetti. This is usually caused by scar tissue or cancer. And while Karen has a lot of scar tissue from past surgeries, they say the major cause is most likely all of those little nodules in her abdomen growing and sticking to everything. This makes surgery a very complicated option. It'd be like trying to cut into a block of fruitcake without hitting any fruit. The risks can easily outweigh the benefits. To the point where it's not uncommon to simply insert a "venting tube" through the neck and into the stomach and send you home. This lets you suction your stomach anywhere, even at home. You can typically live another 25 to 30 days in the comfort of your home, rather than spending your last days in the hospital. They tell us this isn't necessarily what will happen this time, but it's the path Karen's on, and something that will likely be done in the future if it doesn't happen now.

They told us they like to wait three days to see if there is any improvement before "changing approaches." I asked for more specifics, like would they be inserting the tube at that time, but they just said they'd prefer to wait until those three days are up and then reevaluate the situation and decide what to do then. I can't tell if they are just trying to keep us positive and our minds off the alternative, or if they really aren't sure how close we are to this cold reality. We still have all of tomorrow for things to start moving on their own again, and my guess is if there's still no progress we won't hear any options until sometime Friday. The lack of progress has me worried, but we're both trying very hard to remain positive.

Back to the Waiting Game

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.

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.

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.

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.

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.

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.