Obiturary

On Sunday, July 29th, 2018, after a 5 year battle with cancer, Karen Page passed away at her home in Phoenix, Arizona, in the arms of her loving husband. She was only 43 years old. Karen will be remembered lovingly by those she left behind, including her husband, Daniel Valenzuela, her father, C.G. Page, two brothers, John, and Lindsay, four nephews, Alex, Jameson, Roland, and Nathan, and niece, Cassandra. She was preceded by her mother, Sandra.

Born in Tucson, Arizona on August 10th, 1974, Karen received her bachelor's degree in Chemistry from the University of Arizona in December of 2000. She worked at Ventana Medical Systems from 2001 to 2003, and then Protein Technologies Inc until 2008. After relocating to Phoenix, she then worked at the Arizona Department of Agriculture and Department of Health until she could no longer work in 2013. Karen was an incredibly talented chemist, unafraid of accepting the many challenges presented to her in the laboratory.

Karen lived life to the fullest. She learned to play violin and piano as a young girl, but also had a continuous desire to learn new things throughout her life. This included learning to ride a motorcycle, taking sharpshooting classes, creating costumes for the Phoenix ComiCon, and even learning how to completely redo the plumbing and electrical in her house and remodel her bathroom. Karen was also as kind as she was curious; everyone who knew her appreciated how she shared her love wholly with animals and people alike. Her presence and sharp wit will be missed by all those fortunate enough to have known her.

A celebration of life will be held in Phoenix, Arizona on August 25th. The venue has not yet been decided, but if you'd like to attend please email me at Valenz@gmail.com for more information and to help me get a better idea of the head count. This obituary and it's guestbook can also be found online here at legacy.com.

In lieu of flowers, please donate to the Arizona Animal Welfare League (aawl.org), or your own local no-kill shelter.

Jaundice

On Friday evening Karen started feeling bad. She puked once that evening and through the rest of the weekend had flu like symptoms: Sweats, achy joints, and a low grade fever. Then, on Sunday, Karen suddenly turned yellow. Her eyes were especially yellow, and her face was a shade of yellow-orange. We both knew this was jaundice and immediately thought "liver failure." We quickly decided to head into Mayo Clinic's ER. While Karen packed her stuff - toiletries, change of clothes, lactase enzyme pills, laptop - I called the 24 hour "emergency" number Mayo gave us and spoke with an oncologist who said it wasn't as urgent as we thought and to simply call Monday morning. They could arrange some bloodwork and an appointment then. We called first thing Monday and left a message, but Mondays are always the busiest and we didn't receive a call back until after noon. But they must not have had any openings in their schedule because they told us to just come in to the hospital instead. In the past nurses have told us Mondays' always have the longest waits in the ER, and the shortest waits were during the hours of 3am to 9am. So that was frustrating. It was probably the longest we ever had to wait with Mayo. But to be fair they did get the blood work and urinary analysis started while we were waiting.

That evening, a CT scan showed that lymph nodes near her liver had become enlarged and were pressing on her bile ducts, preventing them from draining. When these get blocked, bile builds up in the liver itself, and bilirubin builds up in your blood. Bilirubin is an orange-yellow pigment that occurs normally when red blood cells break down. There is a procedure where they can put a stint in your bile ducts to keep them open, so Karen was kept NPO until morning when the gastrointestinal (GI) team would be around. They seem to put your on an NPO diet whenever you check in for an emergency as surgery might be required and they like you to have not eaten or drinken anything before any surgery.

We did get to see the GI team Tuesday morning. They said the procedure has a 1 to 2 percent chance of causing pancreatitis due to the proximity of the bile ducts to the pancreas. We were told it's very painful and for someone in Karen's situation the risks outweigh the benefit of removing the bilirubin from her blood. They strongly recommended skipping the procedure. If the bile ducts become infected, or she begins to have other symptoms, such as itchy skin, then they would recommend the procedure at that time. So Karen is not only staying yellow, but missed a day's worth of meals for nothing.

The urinalysis they started while we were waiting in the waiting room not only showed the bilirubin, but a UTI. They now believe her discomfort and low grade fever were from this and unrelated to the bile ducts being blocked. That seems like quite a coincidence to me, but they insist spontaneous infection of the bile ducts, even during a blockage, is quite rare. Karen was started on a broad spectrum IV antibiotic that first day to treat both the UTI and a possible infection involving her liver. They have since begun culturing the bacteria found in the urine to look for a good oral antibiotic she can take at home after leaving the hospital. Like Karen's previous UTI, there seems to be some difficulty finding an antibiotic she can take via mouth that will work on her UTI. That's the last thing holding back our discharge and return home.

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.