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.

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.