12 Days of Antibiotics

Karen was released Saturday evening, and did we sleep in today! She's feeling better since starting the new antibiotic. In fact, she's feeling better than she's felt in months. This again makes me wonder if this infection had been around for a while. Perhaps some other issues we've been dealing with were related to this infection? Despite receiving ertapenem, the antibiotic, once a day for 3 days in the hospital, we've been prescribed another 12 doses over 12 days. They aren't taking any chances with this one. The only way to administer this antibiotic is via IV, so our options were either home health care, or coming into Mayo Clinic every day. It's a half hour drive, but we've opted to come in. Karen did well when we had radiation every day for 3 weeks, and we like the quality of the care we receive at Mayo. We actually had our first infusion today and it went smoothly. We received the same great care and accommodations we've come to expect from Mayo and are happy with the decision.

As far as home health care is concerned, over the years we've probably had six or seven different home care nurses, but there was only ever one we really liked. Perhaps Mayo has spoiled us, but a lot of home health nurses don't measure up. And the one we did like ended up getting a job somewhere else, but the company wouldn't say where. We've primarily used Arizona Home Care. It's recommended by Mayo and is covered by our insurance. They claim to be the largest home health care provider in Arizona, but we've never had much luck with them. Each nurse seems to have their own ideas of how things should be done, and what is and isn't sanitary. This lack of consistency causes concern. While they try to give you the same nurse each time for the same procedure, when a substitute comes by they often do things in an entirely different way. This either leaves you worried about how the current nurse did something, or how the previous nurse had done it. They also have to call from your home phone to prove they were here, but we don't have a home phone line. So one of us has to unlock our mobile phone and hand it to them to use, which can be a bit uncomfortable with a stranger. Surely they could lend the nurses a company phone and use that to track their GPS coordinates - or at the very least ask them to install something on their personal phone that will track their coordinates while they're working. Sure, there are other home health care companies, but we don't have any recommendations from anyone we trust, and this feels too important to leave up to chance.

Another Hospital Stay

Because Karen has cancer and a weakened immune system, Oncology has told us to call in whenever she gets a fever. They like to monitor any kind of infection very closely, even if it's just a viral infection. On Tuesday Karen was alternating between hot flushes and sweats, and chills. It sounded like a flu so we took her temperature and it came up as 99.9°F. In the past 30 days Karen had been treated for a UTI twice, but with entirely different symptoms. However, because of this history, they wanted us to come in. It was almost 5pm at this point, and the regular hospital entrance would be closed, so they told us the ER would admit us. Since the ER never closes, we opted to wait until rush hour had passed, and it doesn't really calm down until after 7pm. We assumed we'd end up staying a few days and spent some extra time packing.

We didn't arrive until after 9pm. And it only took a few minutes for us to get our own room to wait in while the admission was being processed. It was a busy night so we had to wait a couple hours. But we had our own TV, and they had water, sodas, and juices available. We both had water, and after a while I had some orange juice and Karen had some cranberry juice. We weren't officially admitted until around midnight, but we're night people and found the overall experience quite positive all things considered.

While we originally thought it was probably just a flu, Karen UTI symptoms returned the evening before we left for the hospital. With an unclear diagnosis they ran a bunch of different tests and took a bunch of different cultures. They got a urine sample, blood samples, and an xray to check for pneumonia. They even took blood from two different sites on her body to have a better chance of catching any infection. These cultures typically come back in 24 to 48 hours, so they put her on a broad spectrum antibiotic while we waited, just in case it wasn't the flu.

The results came back early this morning, and it turned out to be another UTI. I'm not sure why this one caused flu like symptoms. Perhaps it was a more aggressive UTI than we've had previously, or perhaps the prior infections hadn't quite gone away and had spread to other parts of the body? This particular bacteria was found to be resistant to all oral antibiotics. This means there wasn't a pill Karen could take to beat this UTI. It was also resistant to the IV antibiotic she had been receiving. They switched over to ertapenem this morning. Writing this out, it actually sounds pretty scary. But it's pretty common to swap out antibiotics after your UTI is cultured, and Karen was already on the new antibiotic and starting to feel better before we had the full story. So finding out the details later in the day wasn't traumatic for us in any way.

As long as things continue to improve we should be home soon. I'm hoping we can get out of here tomorrow, but Saturday seems a bit more realistic. Either way I'm really looking forward to it. It's so hard to sleep in a hospital.

It's Time For Something New

We've had some mild success with Lansurf. It's been able to slow the cancer's growth. Karen's cancer often appears stable during treatment, but the term "stable" allows for a small measure of growth. This is due, in part, to the inaccuracies that can occur when measuring not just cancerous growths, but any organ in your body. When you turn an apple or orange to the side it can appear wider or narrower. Similarly, small shifts in how you are laying or how things inside your body are resting can affect measurements. So while Karen's CT scans have shown the cancer to be stable while on many different treatments, there always seems to be small amounts of growth. An earlier scan during Karen's Lansurf treatment however, showed zero growth, which if it's not a first for us, hasn't happened in quite a while.

Unfortunately, as you treat cancer, the cells slowly evolve resistance to the treatment. So, as has happened with all our treatments in the past, Lansurf has become less effective. For the most part Karen's CT scans appeared stable. But her pain level has been increasing lately, and doing so at an increasingly quicker pace. This is a sign that even if the scans aren't showing significant growth yet, it's happening, and in places or ways that are causing pain. A vast, vast majority of this pain is all in one spot on the right side of her abdomen. This is the spot that has been bothering her on and off as long as I can remember. It's the spot that last year's big abdominal surgery was suppose to fix. It was also the most painful spot targeted in Karen's previous radiation therapy. It's reached the point that when it bothers her, her pain spikes to a 10 out of 10. She doubles over in pain when it flares up.

It's gotten to the point where Karen has to sit or lay a very specific way to avoid hurting. Walking for more than a few minutes has also been painful. Luckily, Karen discovered if she wears ones of the wraps she got after her big abdominal surgery last year, she can tolerate walking and moving around a lot longer. It varies, but it gives her an extra 5 to 15 minutes of activity. Initially I referred to these as constricting bands, but we've heard them called "support wraps" more often since then. (They look like this.) She's also been learning which subtle changes in position put less pressure on this sensitive area.

It's hard to remember exactly what dose of Fentanyl patches Karen had been using at the start of the year, but I'm thinking either 75mcg or 100mcg. Either way, the dosage has been pretty consistent for a long time now. In the past month or so, the dosage has been bumped up 50% to 150mcg. I have no doubt this is the highest dosage of Fentanyl Karen's ever been on, but she says the increase hasn't helped at all. She's already told me she plans on going back to the 100mcg she's used for so long. Certain kinds of medication just don't help with certain kinds of pain, and we just haven't been able to find anything that helps much with this. It seems perhaps ibuprofen has been the most effective. She even feels turmeric helps to a degree. So we think the pain must be related to inflammation.

Earlier in the month the oncologist said he'd check if radiation therapy could retreat this spot. Things were quiet for a week or two, and then suddenly everything happened rather quickly. Insurance approved everything pretty much instantly, even though special (more expensive) precautions must be taken when you're receiving radiation a second time. Karen had her radiation simulation on Monday. This is where they make a mold for you to lay in during your treatments, and then CT scans are done of you in that position to map out how they are going to target the tumor without damaging anything else. They also mark you so they can line everything up again later, but her previous markings did the trick. The planning was complete less than 48 hours later. Yesterday and today she received a total of four radiation treatments: one each morning and one each afternoon. And that's it; two days and we're done. It's a higher dose over a much shorter time compared to last year's treatment. It's also been administered twice a day instead of once a day. We've been told "mixing things up" helps the effectiveness of repeat treatments, as cancer also adapts to radiation therapy.

Just like last time, things are getting a worse before they get better. The tumor site has gotten more inflamed and is making it hard for Karen to find comfortable positions that don't put pressure on the spot. Last time it took a couple weeks before she noticed any improvement, but that treatment was over 3 weeks, so hopefully we'll see results sooner than that. Things slowly improved for a long time after last year's treatment, for 6 to 8 weeks, or maybe even longer. In the meantime we won't be going back onto Lansurf. There's a very promising clinical trial that Karen's was approved for several months back. It required a cancer sample to test against, but they still had a sample from a previous clinical trial we didn't get into. This time however, there was a match. Since the radiation targeted just one spot, and there are other spots they can monitor, we don't have to wait for an extended "cool down" period to start the trial. We are scheduled to begin near the end of the month.

Recovering Just Fine

Karen was released late last night and we made it home just fine. As expected, no one could say for sure what caused all the trouble. The doctor that released us said that it could have still been a partial blockage. As such, he suggested not returning directly to solid foods. He said it would be best to start out with a liquid diet and advance to solid foods one step at a time like we would after a blockage, but to do so on a much quicker scale.

Karen has worked up to soft foods already, but not sure if we'll try solid foods tonight or wait until tomorrow. We'll see how Karen's feeling later. She wasn't feeling good enough to start chemotherapy today so she decided to hold off until tomorrow. There's no point in risking a relapse or dealing with the added side effects when she still feeling a bit off.

Another ER Visit

Last night around midnight Karen suddenly got nauseous. She's still on the same chemo schedule where she takes Lansurf for two weeks and then has a two week break, and she was due to start today. It's not uncommon for chemo patients to get nauseous when they travel past a building where they had received chemotherapy, or to get nauseous the morning - or even day - before chemo. And while Karen doesn't get drive-by nausea, she has gotten nauseous before chemo. So we chalked it up to that.

She has to take her chemo pills with food, but when she got around to eating this morning she puked instantly. She hadn't even taken the pills yet. At this point we figured it probably wasn't a mental thing, and tried to guess what it could be. She had pooped just fine last night before bed, again, around midnight; so we figured it probably wasn't a blockage. That left us with a stomach bug or food poisoning. We couldn't think of any questionable food we had eaten recently, but either way there's nothing they can do for a stomach bug or food poisoning, so Karen wanted to try and wait it out.

Unfortunately the antiemetic (antinausea) medication wasn't working, and Karen kept puking every hour or two. After the fourth time vomiting Karen was getting worried; maybe it was a blockage. So we decided to head into the ER. They did an X-ray instead of the usual CT scan to check for any signs of a blockage instead of starting with the CT, but didn't find anything. She also hasn't vomited since we got to the hospital. They did give her something for nausea, but it's the same stuff that wasn't working at home. And she hasn't needed anything in awhile. It looks like she almost outlasted it, whatever it was.

We don't expect to be admitted.

We're Free

Karen and I both had allergies in the hospital. One of the nurses complained about it too. I'm not sure if it's from the smelly bouquet of flowers they always had out there, or if there's just a lot of outside air getting in. This caused a new issue with Karen's NG tube. Her nose was runny, and mucus would drip down the front of the tube. She had to constantly wipe her nose. My guess is while sleeping the snot was running the other direction, down the back of her throat. She started to get a little bit of a cough these last few days, and last night while trying to sleep she kept choking on the tube. She finally had to ask them to take it out. She likes to be cautious about removing the tube since she hates having it reinserted, but she just kept waking up choking.

The day got off to a slow start. Karen followed the same liquid diet for breakfast; on a liquid diet all meals are pretty much the same. The doctor who we had expected to argue talk with about moving up to solid foods didn't show up in the morning. We asked the nurse about it and she said that particular doctor usually visits in the afternoon instead of the morning. We were worried we wouldn't get a chance to order solid food for lunch, so we had the nurse contact the doctor to see if we could move up. We didn't really know if they'd OK it, but they did. And Karen got solid food for lunch: some kind of gluten free noodles, and some intentionally over cooked veggies.

The doctor stopped in to see us around 2pm. She asked Karen if she had any more bowel movements, and she had - earlier in the morning. Then she asked how the solid food went down and how Karen was feeling. And then told us she had already put the discharge through before stopping in to see us. We were both pretty surprised about this as everything had been moving so slowly this time. We were signing release papers by 2:30 and packed and on our way home by 3. When we got home we both fell asleep. What an exhausting visit to the hospital.

Clear Liquid Diet

This is just a quick post to say that we did pass the clamping test. They take a large plastic syringe and try to pull anything they can up through the tube just to see how much comes up. They've always gotten something back in the past, even when we've passed the test, so I'm not sure what the threshold is. But this time they got absolutely nothing.

They had previously told Karen even though she couldn't have any food or water by mouth, lozenges were ok. So I brought in some Ricola - the original and the honey herb - but I also snuck a Lemonhead into the bag since Karen really likes those. She worked on that during the second half of the clamping trial. If something is going to get your digestion going it's one of those. I credit the Lemonhead with the overwhelmingness of our success.

Karen's now allowed to have clear liquids. So she's had water, tea, broth, some strange but delicious off brand jello, cranberry juice, and Italian ice. She hasn't even had a hint of nausea, which she's typically gotten in the past just as a hint that we need to slow down. Hopefully we start soft foods tomorrow morning. No one has given us a time frame, but in our past experience they will keep us until she has another bowel movement. Assuming she's empty now that means the new food is working it's way through just fine. We hope to be heading home by at least Sunday.

Clamping Trial

Karen started to get real hungry last night around 1am. To her this meant her body was ready to eat again, and she wanted to be proactive about it. They have to unhook you temporarily from the suction if you want to go for a walk, sit in a chair outside of your hospital bed, or go to the bathroom. So after they clamped Karen for a bathroom break we went walking around for a while and came back to the room to rest in a chair, and then started the cycle over. Karen managed to stay unclamped for about two and half hours before she felt exhausted enough to get back into bed. A clamping trial is usually 3 hours, so she was ready with this news when the doctors came in to see us. They were happy, but told us we should still consider having a PEG tube inserted through Karen's neck for future occurances. Karen said, "not this time" and they agreed to a formal clamping trial.

They ordered an extended clamping trial, which is 6 hours long. We have only done this once before after a false start earlier in the year after her ostomy reversal, which was very traumatic on her intestines. Since the nurse had only reconnected Karen for a couple minutes before the doctors came around she decided to quickly disconnect Karen from the suction and count the earlier time towards the trial. So if everything goes well we'll be on clear liquids in a few hours. We're pretty confident it'll happen.

You Little Piece of...

Karen passed a very small amount of stool earlier. In the past this has been enough to get us on a clamping trial. That's where they clamp your NG tube and see if you get nauseous. If you do, then it's due to the pressure of your own digestive fluids building up again and this tells them things still aren't moving like they should be. This time it's not enough. It was suggested a clamping trial could still be a day or two off.

Our favorite doctor, the one who did the original surgery and watched over us in the hospital in the past, wasn't able to take us on this time for one reason or another. He did stop by "just socially" to say hi and offer some words of encouragement, which means a lot coming from him because he's one of the few doctors that's always given it to us straight and has never been one to dance around bad news. We have a different doctor who has taken the lead in Karen's care this time. So perhaps this doctor is just more conservative in her treatment of bowel obstructions compared to him.

The only other thing that comes to mind is the output from the NG tube. The output they are getting seems to be more than I remember in the past. There's no shortage of doctors around and I've asked what output volume would be a healthy amount, but no one seems to have a set amount. They just seem to be expecting "less." And the output doesn't seem to have changed much since the previous day. I'm not sure if the depth of tube placement matters in the amount of output, or if certain locations are more likely to catch more of her digestive/gastric fluids even when things are moving. But that is a possible issue.

Since this was a mid to high grade blockage maybe there's just more progress that needs to be made before the clamping trial. I'm just not sure how they are gauging progress. I'm a little surprised they haven't used more imaging to check on the obstruction. I guess we'll just have to wait and see what tomorrow brings.

Small Amount of Progress

In the past it's been difficult to tell exactly what caused the blockage, and with the ostomy even a bagel could do it. The doctors seem pretty certain that this time it's a kink, twist, or cancer growth obstructing the flow of the intestines. When we came in, nothing was getting through, so Karen had no gas either. However, Karen started passing gas again. This tells us something is now getting through, which means there's a good chance there's enough range of movement for things to open back up entirely if they haven't already. We're not in the clear yet, but it's certainly a good sign.

Karen did manage to get a lot more sleep last night. Today looks to be another repeat of yesterday; more waiting. But we've been getting a lot of walking in. Oh, and Karen got a quick shower this morning. So she's fairly comfortable. Still no abdominal pain or nausea. The only thing really bothering her right now is the NG tube. The problem there is it hurts more and more as time goes on. The pain begins to radiate outwards and is now starting to give her an ear ache. In the past it's even worked itself into a dull headache. She tried some of the pain medication they had prescribed earlier, but it didn't work for the kind of pain caused by the NG tube.

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.