Home, but Not Home Free

Whenever there's a blockage the doctors like to wait until you start passing gas or having bowel movements before doing a clamping test and letting you eat again. On Monday, after four days of no progress, Karen asked for a suppository - hoping to start things from the other end. We were told it doesn't work that way, and any stool passed like this wouldn't count as it would have been trapped on the other side of the blockage. We insisted and they let us try. The suppository gave her diarrhea - this was Monday night. But the next morning she had more diarrhea. At this point no one could say if it was more of the same, or if things had begun to make their way through past the blockage.

We came in on Friday, so by Tuesday Karen hadn't had anything of sustenance for five days. Combine this with the liquid diet she was on for two days before we came in, and she hadn't eaten much in over a week. She decided she was going to try and talk the doctor into a clamping trial despite the doctor's insistence that her bowel movement didn't count. And almost as if the doctor knew what Karen was going to ask, she didn't stop by the entire day Tuesday. When evening came and Karen realized the doctor wouldn't be by, she was upset. I hadn't known she was waiting for the doctor to ask for a clamping trial, and told her all she had to do was ask the nurse to ask the doctor for her. The night time doctor must have been hesitant however. Karen was given an 8 hour clamping trial - our longest yet. She passed, and was allowed to start on clear fluids Wednesday morning.

By thursday they had advanced her to full fluids. But she seemed to keep getting uncomfortably bloated after a liquid based meal, so they stopped advancing her diet. Normally by Friday we would have been on soft foods, but even now she's on a liquid diet. For some reason I thought the only possible results were releasing Karen on solid foods with her bowel obstruction cleared, or releasing her with a venting tube so she can spend her last days comfortably at home. But today, Karen was sent home on liquids. I'm not sure why this possibility hadn't crossed our minds. I guess the doctors only ever really discuss best case and worst case scenarios.

Her intestines seem to have opened up enough to let liquid through, but not much more. The doctors are unsure if she will be able to eat solid foods again. We've been cautioned to go slowly. Karen decided she wanted to try some soft solid food for dinner, and had soup. Her stomach grew painful and she threw it back up. So we certainly aren't there yet. Actually, I feel this isn't much of an improvement over when we went in. I'm worried that with the NG tube trouble preventing her stomach from decompressing for the first few days of our stay, and the suppository causing a bowel movement, that we've moved too quickly this time around. That said, I'm not sure how much longer we should have waited - her arms are so thin now. I hopeful things will still resolve completely, but I fear this might be our new normal.

Tube Troubles

The NG tube has continued to complicate things this visit. It's gotten increasingly difficult to get it to drain. At one point on Saturday, our nurse spent over an hour trying to get it going again before Karen asked for a break so she could do a couple laps around the hall. The nurse was able to get it going again after Karen's walk, which made us wonder if it was somehow positional. Once it was going it was good for the rest of the day, but that evening, it starting having trouble again. Everytime it gets blocked Karen feels the pressure starting to build up and eventually pain. The night time nurse wasn't as successful as the previous at getting it going again, and ending up going in and out of her room throughout the night, but without success.

Finally, in the early hours of the morning the nurses got together and decided the tube might not be in far enough and pushed it in another 5 cm. They also contacted the doctor to get an order for an X-ray to check the placement. Pushing the NG tube further was rough on Karen, but it seemed to get it going. The official X-ray review came back a half an hour later and stated there was "a bend in the nasogastric tube towards the fundus of the stomach" and suggested it "be retracted approximately 5 cm to relieve this bend." To Karen's great frustration, they pulled it back to where it was before. It continued to work for roughly another hour before stopping again. They decided they wanted to put in yet a bigger NG tube. It was Sunday morning by now and the nurse from the day before was back; they had given her the task of putting in the larger tube. Karen tearfully declared that that was it, and she was going home. The nurse quickly said, "You shouldn't make a decision after not sleeping." She turned off the lights and both her and her helper left ran out of the room. They were gone so quickly it was like something from a cartoon or bad movie. Finally, Karen slept.

Karen's been having trouble sleeping since she came in. We only recently realized the side effect of stopping of one of her meds, gabapentin, was difficulty sleeping - along with irritability and anxiety. They don't let you take any pills when you have the NG tube in, but they have a liquid form of gabapentin they can put down the NG tube. We just have to wait half an hour for it to absorb. We had only recently started back on it, so I think this finally let Karen sleep restfully. You'd think they would have identified the meds you can't stop abruptly and make sure you get them. If I hadn't thought about it, she would just gone without. They go over all your meds when you're admitted into the hospital, so I'm not sure why there isn't some automated process to flag meds such as these.

Before we had gone into the hospital we had run across an article that stated Coca-Cola helped resolve a particular kind of bowel obstruction caused by food. (Here's the article I ran across, and here's the actual paper.) Sometimes just thinking about something you can't have makes you want it. Karen asked me to bring a Coca-Cola Life in to put in her personal refrigerator, so she could have it once they put her on a liquid diet. She really wanted that coke and told me if I were to open it for myself, she might take a sip. But with the nurses going in and out messing with the tube all the time, I figured we'd only get in trouble when they saw the soda coming out of her stomach, through the NG tube, and into the collection canister.

Karen managed to sleep for roughly 4 hours, and was in a much better mood when she woke. Karen's frustrations had mostly been with the night nurses. She got along well with the day nurse. Occasionally her and Karen would just sit and talk. After Karen mentioned how badly she was looking forward to the Coca-Cola, the nurse let her have it. Even though anything you drink when the NG tube is on suction will come right back out, she could have gotten in a lot of trouble for this small act of kindness. It bubbled up through the NG tube and sat in the canister bubbling. The nurse replaced the collection canister with a new one, but coke colored fluid kept coming up. It had mixed with the other fluids in her stomach and seemed to just keep coming up through the NG tube. In fact, the tube started working perfectly. It worked for a good 24 hours. There was only one more blockage. This time the nurse had found the manual for the NG tube and made notes. She flushed the larger part of the tube with water and the blue pigtail tube with a specific amount of air. (This is what they look like.) And that was the last of the trouble with the NG tube.

Obstruction Anniversary Visit to the Hospital

We're back in the hospital for another bowel obstruction. Our last visit for a bowel obstruction was almost exactly one year ago, January 10th of 2017. After reading last year's post, I can only assume they no longer have you drink the contrast before a CT scan. I can understand the potential issues in drinking something like that when you're already backed up, but it's disappointing to us because the contrast itself seems to have resolved blockages in the past. We've even joked about getting some to go - and between you and me, that was really more of a question everyone laughed at, than a joke.

Before all this started, Karen caught some kind of stomach bug. We don't think it was the flu because she never had much of a fever. We checked often but I don't believe we ever saw her temp go above 98.9°F. She did however have diarrhea. Taking imodium to control diarrhea has preceded blockages multiple times in the past; so this time we decided to just skip her usual bowel maintenance regimen. This has slowly grown over the years to accommodate the increasing amounts of opiate based pain medication. It includes senna, colace, bisacodyl, and if things start to slow down, lactulose. Even skipping all these laxatives, it took a week for things to calm down. To the best of our knowledge there was no time between the diarrhea and the constipation. Just one day things were moving too quickly, and the next she had no bowel movements.

She developed abdominal pain and bloating and we decided this may be the start of a bowel obstruction. So along with jumping full speed back into our regular laxatives, we switched to a liquid diet. That was the 9th. By the 10th the pain and bloating had gone away and we were pleased we had caught it in time. There had still been no bowel movements and by the 11th the symptoms started to return. Karen's pain level spiked later in the day on the 12th and we went into the ER. The hospital waiting room was packed, but I guess Karen gets VIP treatment now, as we quickly got a room. Shortly after, a CT scan confirmed it was a bowel obstruction.

Although we haven't forgotten in the least, one of the doctors wanted to remind us that Karen has a frozen abdomen and no surgery would be possible. (I explained it here last time.) Which means we basically just have to wait and see if it resolves on its own - and if not, they can place a permanent venting tube and send Karen home one last time. Our obstructions have always resolved on their own in the past, but it's a stressful situation. And any deviation from our past blockages makes me nervous.

Normally obstructions are accompanied by intense nausea, and while Karen did puke on the way in, it wasn't preceded or followed by any nausea. The pain was bad, but seemed to go away extremely fast after the NG tube went in. Perhaps her ever increasing fentanyl dosage helped mask some of that pain, but I can't explain the lack of nausea. This is also the first time we're constantly having trouble getting stomach fluid out of the NG tube. While in the ER, the initial NG tube was removed and replaced with a larger tube, but we're still having issues. It seems they have to flush the tube every hour or two. I worry the tube went in too far and it's just pressed up against the bottom of her stomach and that's why it can't suck anything out. Both the nurse and doctor felt the position was good; so what are the odds both of them got this wrong? I guess the other possibility is just her stomach is already empty due to our two day jump start of a liquid diet at home, but everyone thinks they'd see less distension if this were the case. This is important to get right, as part of what allows blockages to reverse is the lack of pressure upstream.

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.