Chemo and Ranch

We went in bright and early for our scheduled chemotherapy treatment at 8:15 am this morning. The place was empty. There was only 2 or 3 other patients there. I don't know if it's because it was earlier than normal, or if it was due to it being a Wednesday instead of a Monday. Her temperature was normal and her blood work came back fine - well, better than last time - and she was OK'd for chemo.

They started the hydration - saline solution - with something for nausea, Aloxi plus Emend. This is the first time I caught the Emend part of the mixture, but upon looking into, it seems pretty normal to give with Aloxi. And when I asked about it, they said they had always given it to Karen. The reason I asked however, was due to the nausea she was having. It seemed to be so well contained last time, it was strange that she was so nauseous this time. She was quite disappointed, and said she thought they had worked this out last time. When I mentioned it, they said the only thing they could give her would be Ativan (lorazepam). This confirms my guess from the last treatment; it was certainly what they gave her last time. The nurse asked her if she wanted it, and Karen was eager to get anything that would help with the nausea. She went from alert to sleepy, and nodded off for a bit.

When she woke up, the nausea had not only passed, but she had an appetite. And she wanted food. They allow you to bring food in with you while you're getting chemo, and there's a Carl's Jr in the same strip mall as Arizona Oncology. So we looked up their menu online and I went over and picked her up some fries and fried zucchini. Her hands were already cold sensitive to the point where her fingers burned when she moved her IV drip stand, so the warm food felt good on her fingers. Karen and I agree, Carl Jr's house dressing is pretty gross - at least their buttermilk ranch is acceptable.

The hydration they're doing adds roughly an hour or so to her treatment, but this was the first time she was actually able to sleep during chemo, so it didn't really seem much longer. It also didn't seem to hit her as hard as last time, and she's been up most of the day since. She laid down about half an hour ago to read and fell asleep, but that can be hard to do even when you're not on chemo. All in all, I'd she's off to a good start this round. Let's hope things continue well on through Christmas.

Small Reprieve

The effects of chemo were about the same this time around. While Karen still had some nausea, it has been much better managed this time around. Certain strong smells still make her nauseous, but she was able to eat much better. She had a migraine again but she's no stranger to migraines and once every two weeks doesn't seem unbearable. Her cold sensitivity was much worse. She wasn't able to drink anything that wasn't warmed for about a week after her pump was removed, even room temperature liquids were too cold. She's also been getting canker sores in her mouth since she started chemo. However, since that can happen from time to time, she didn't give it a second thought until it persisted into her second treatment.

So on Monday we saw the physician working with Karen at Arizona Oncology. After mentioning the canker sores, the doctor confirmed that it's probably a side effect of the chemotherapy, and she wrote a prescription for a mouthwash. It's a big mix of things, but is mostly just Benadryl. The directions say to rinse with it and then swallow. Karen's also been fighting an upper respiratory infection of some sort for over a week. They had given her antibiotics to make sure it didn't turn into anything worse, but her nightly fevers had gone up to 100.1° F and that concerned the doctor enough to postpone chemo a few days. We rescheduled for Wednesday, with pump removal on Friday.

And It's Off

I'm glad to say I couldn't have been more wrong about yesterday. Karen was awake and alert most of the day. I'm not sure if it's because she slept through Monday, if it's the new medication they gave her via IV, or if she's just getting use to the chemo - can you do that? She seems to be handling it much better this time around.

We were seeing her general care physician yesterday. He's been getting updates from Mayo Clinic via fax and is keeping up with everything going on. You can tell he really cares about Karen, and it's always nice to hear an outside medical opinion about her situation. It also makes it easy to get any paperwork filled out, such as return to work, or disability forms. During her visits, we have literally sit down with the doctor and his assistant - who happens to be his wife - and gone over whatever paperwork we have. When she asked about going back to work he was quick to say, "No, don't do that!" But said he'd be willing to sign a work release if that's what she really wants.

Karen has been having doubts about going back to work during her chemotherapy, especially since it's been so tough on her. I know she really likes everyone she works with and misses them, but it really seems less and less likely that she'll actually be able to work. She's been asking everyone what to do. I want her to be happy, but don't know what to suggest. She has a lot of side effects from chemo. Even if she can get around the usual nausea that bothered her almost the whole time the first two weeks, strong smells often make her nauseous. She's still on prescription pain medication. She never got over the cold sensitivity with her hands, it makes them tingle and hurt. Her white blood cell count is way down, which means she's susceptible to disease. And sometimes she just has to sleep. Staying out of work makes sense, but then what about all of her work friends? What about the satisfaction a good days work brings her? What about her job?

Karen's father came down to visit today. She figured her pump was about finished when he got here, so we went to Arizona Oncology to have it removed. We only waited 5 to 10 minutes before they took us back. There was 0.5 ml out of 100 ml left in the pump, but they disconnected it anyway. It was 99.5% finished; I guess that's good enough. We asked for some IV fluids like we had talked about with the PA, and another 5 to 10 minutes later they had it going. It's just a sterile solution of 0.9% sodium chloride, aka saline. This is suppose to help with the dehydration Karen's been experiencing, which is likely making her sleepiness and nausea worse, as those are symptoms of dehydration. It took about an hour, but Karen did feel better.

There had also been talk of receiving more of the anti nausea medication Aloxi, to be given during her return visit. But, like the saline, it didn't seem to get written down. We didn't have to twist any arms to get it, but when I asked they had to run off for a few minutes to get it approved. If I didn't think to mention it, we'd have gone without. The Aloxi is normally only given on the first day of your chemotherapy, and it stays in your system for two days. This explains why her nausea didn't really get bad last time until the pump came off, because the pump comes off after two days. Hopefully this will let us stay ahead of the nausea this time.

So far so good.

Round Two

So today was the start of Karen's second chemotherapy treatment. She had pretty much recovered from the first one, but it was quite hard on her. So hard in fact, they almost didn't do chemo this time. You could tell she was really fretting another treatment.

Our day started with an appointment with the physician's assistant (PA). The title might make it sound like she's just someone who runs around doing little things for the physician, but it's a formal title and PAs are licensed to practice medicine. She asked us about how it went last time to see what they could do to make things better this time around.

The cramping in her hand was the worst that first day, and calmed down a lot when they took the pump off on the third day. The PA wasn't fazed by this. We didn't feel the cramps were bad enough to medication, and Karen's all for taking less medication if she doesn't need it.

The cold sensitivity pretty much stuck with Karen both weeks. After that first week she could eventually drink cold liquids, but even during the second week her hands were sensitive to cold. As I had mentioned before, grabbing something out of the fridge felt like she was taking something out of a -70° freezer at work. I don't know if there's anything that can be done about this, but the PA did note it.

Karen only experienced the one migraine early on, and she wasn't even sure it hadn't been brought on by the weather system that blew into town and made it storm like crazy. The PA was content that the medication Karen had for migraines worked.

The diarrhea I mentioned last time subsisted through Friday. Due to the stoma, it's not as difficult or frustrating a problem as it would otherwise be. But she did have trouble staying hydrated even after that had stopped. They told us hydration is a common problem and that she'd probably feel better if she got some fluids via IV when she came in to get the pump disconnected.

The cheap thermometer we had broke, so when things turned bad again that second week, we got another one. It's a much nicer one this time, a temporal artery thermometer. They're very quick and easy to use; you just run it across your forehead. That whole last week she had low grade fevers at night. Mostly around 99.5°. The highest we saw it at was 99.7°. We were instructed to call if it ever got up to 100.5°. So we never had to call in, but we mentioned it to the PA during our visit. She said fevers are not uncommon for people on chemo, and if it does break 100, to try taking some Tylenol to bring it back down.

We also explained that Karen was nauseous most of the two weeks. While she started to feel better Sunday - four days after she finished with the pump - and was pretty good Monday, she was nauseous and weak again by Tuesday night. It wasn't until this Friday that she started to feel good once more. The PA wasn't happy to hear this or how little Karen had been eating. So Karen is going to get something in addition to the other anti-nausea medication during chemo to help with the nausea, and something extra when she comes in to have the pump removed on Wednesdays. She also increased her dosage of ondansetron (Zofran).

We didn't notice until later that the Zofran had been "increased" to from 4 mg every 4 hours, to 8 mg every 8 hours. It works by blocking the receptors in the brain that receive the signal telling your body to be nauseous, so they recommended, rather then waiting till she's starting to feel nauseous, or before a meal as we had been doing, to just take it 3 times a day, the same time, every day, so it would constantly be in her system.

From there we found some seats in the chemotherapy room. The first thing they do when you sit down, aside from access your port, is blood work. They run a complete blood count to check your blood cell levels since chemotherapy can mess with them. While both her white and red blood cell counts were low, it was the white blood cell count that really seemed to concern them. They said if it were any lower they'd have to delay things a week. They ran some more blood tests and finally decided she would be OK for chemo.

The steroid they gave her last time didn't give her that boost of energy this time. They said the extra anti-nausea medication would knock her out, which leads me to believe it's actually lorazepam (Ativan). It's normally for anxiety, but off label it's used as an anti-nausea medication. A couple times when Karen was having trouble with nausea at Mayo Clinic they told her if she were anxious she could get Ativan which would also help with nausea. And then they'd ask if she were anxious. But she almost always said no. I wonder now if it was just some sort of technicality. When she did get it at Mayo Clinic, it made her drowsy like this.

Her cold sensitivity started much sooner this time, and she says she's more sensitive this time, and the effects last longer. Even just touching a cold door knob can set it off, but to be fair, I think it's much colder now. And also like last time, her hands are cramping and it hurts in her jaw and neck when she chews things. Water has that same bad taste as well. She hasn't had any trouble with nausea but if I recall correctly, it didn't get bad until after the pump was removed. She also didn't get the hiccups last time until then as well. I'm not sure if these things will start happening sooner though, or if it will follow the same pattern every time.

When we got home she ate a little bit of food but was having trouble staying awake and went to bed. She slept most of the day but got up a bit in the evening long enough to eat and get another migraine. Once again she had to take the maximum dosage of her anti-migraine medication to get rid of it, which also tends to make her sleepy. So that was it for her Monday. I assume she'll sleep through most of Tuesday and Wednesday as well, since she did last time. She has an appointment tomorrow with her general care physician, but I'm not sure she's going to be up for it. I don't think we had the chemo schedule fully planned out yet when the appointment was scheduled. I guess we'll see.

One Down

So yesterday, about 12:30 pm, the pump beeped to let us know it had finished. Karen was napping, but got up and clamped the tube from her port and turned the pump off. They told us to just come in whenever it's done. It took us about 30 minutes to get ready and another 30 minutes to get to Arizona Oncology. We only waited several minutes before they took us back and removed the pump.

To follow up from the last post, food hasn't been bland, so dinner that first night was probably just boring. The taste of water has pretty much returned to normal since this morning. The cold sensitivity is starting to fade already, but the whole time she was on the pump, if she touched something too cold it burns and tingles, and if she drank something cold it felt painfully cold down the back of her throat. If she wants a drink of filtered water from the tap in the middle of the night when the pipes are coldest, she has to warm it to room temperature in the microwave.

It was Pie Rush Wednesday at Village Inn, so after the pump was removed, we stopped for fries and a slice of French Silk Pie. She enjoyed the fries but got full before getting to the pie and decided to just take it home; this might have been better with her cold sensitivity anyway. The Village Inn is adjacent to a Tutor Time who was busy towing someone who parked in one of their designated parking spots, even though it was a handicap spot. The manager put a sign up on the door to let other customers knows that Tutor Time was towing anyone parking in any of their designated parking spots and that they had no control over the situation. I still can't get over them towing a car with handicap plates parked in one of their handicap spots.

The fries, which are normally quite safe, came out of her stoma quite quickly, nearly as whole as they were when they went in. Her stomach acid seemed to eat away at the wax ring much quicker than it normally would and was a bit painful. So this is diarrhea with a stoma, slightly better than diarrhea without one. While there would be no need to rush to the toilet or anything, she did get dehydrated and felt quite sluggish. Although, to be fair, she felt quite sluggish most of the time she was on the pump.

While she did have some energy Monday, she slept a lot both yesterday and the day before. She also had a pretty bad migraine yesterday. She had to take two doses of her migraine medication to get rid of it, and as I mentioned before, she doesn't like how she feels when she has to do that. Headaches are a possible side effect, but it's going to be rough if it brings on migraines every time.

One side effect they didn't tell us about is hiccups! They didn't start until after the pump was removed, but she seems to be getting them more frequently as time goes on. The hiccups seem to annoy her, but she says it's not that bad, and she can control them well enough.

Before the big surgery, when we had asked if they were going to do chemotherapy afterwards, they said it depends how "well" things go with the surgery. So when they told us the surgery went well, we thought maybe there'd be little to no chemo. But it turns out we interpreted the message backwards, if the surgery went well then she's strong enough for chemo - perhaps if they couldn't remove all the cancer they'd opt out of chemo and just let her die as peacefully as possible? I don't know. When we asked how long they would want her to be on chemotherapy, they told us 6 to 12 months, again depending on how "well" it's going. Initially we thought that meant if things go well, they'll do the shorter treatment, but, like before, it sounds like we got it backwards. Doing "well" means the chemo is preventing new tumors from growing and she's healthy enough for more chemo. So, if everything goes "well," we're looking at 12 months of chemotherapy.

She's had but one treatment, and is already saying she doesn't want to do chemotherapy anymore. I asked if it was worse than she expected, and she said no, but she had expected it to be pretty bad. The doctors - and everyone else we talk to - warn us that it gets worse over time. So I'm not sure if this first session was bad enough on it's own, or if she's just trying to imagine it getting worse. We seem to have come to an agreement, and she will continue, but I hope it's worth it for her in the end.

First Day of Chemo

Today was Karen's first day of chemotherapy. Somehow Cera got into some food while we were out. I would say that after being home so often we forgot about checking for things she might get into while we were away, but we didn't. Before we left we explicitly checked for any anything near the floor that she could get into. But through some sort of guile, Cera got into a bag on the table that we had assumed would be too high and too far out of reach for her to get. Perhaps she stood on something nearby? I've seen videos of dogs pushing things around to stand on, but she's such an old dog. I guess it will forever be a mystery. She's so stuffed she waddles when she walks. I heard Karen asking Cera if her bowl was full of jelly.

We arrived at 9:15 am for an appointment with the Arizona Oncology doctor. She double checked the pills Karen's been taking and warned us that Coenzyme Q₁₀ is a powerful antioxidant, and as such, may protect cancer cells from the effects of chemotherapy. So Karen agreed to stop taking that. The doctor did one last inspection to check Karen's incision for infection - it's still draining - and gave the final OK to start chemotherapy.

Somehow we ended up waiting till 10:40 am before they took us back to the treatment room, and then after being seated, they didn't actually start the chemo for over half an hour, somewhere closer to 11:20 am. The place is actually a bit small, and it was so packed that some people couldn't start their chemo until others had finished. The nurse helping us said the wait was much longer than usual due to everyone trying to get their chemo in this week - so they will have a full week to recover before thanksgiving - and that the wait will get better after the holidays are over.

We were both kind of surprised that they didn't seem very cautious when accessing Karen's PowerPort. For those who don't know, the PowerPort is a device that allows for easy venous access for things such as: blood withdraw, IV therapy, and chemotherapy. Karen had it installed about a week before her big surgery. At Mayo Clinic they treat it like a like a serious vector for infection. Before accessing it - a fancy way of saying, putting in a needle - they wash up, put masks on everyone within 3 to 5 feet, including Karen herself, and then open a sealed, sterilized kit full of everything else they will need. They put on the sterile gloves included in the kit, and start by cleaning the skin over the port with alcohol wipes also included in the kit. The needle and cover are included as well. At Arizona Oncology, the nurse put on gloves from a box on a nearby cart, she asked Karen to hold her shirt away from the port, reached over and cleaned the skin with alcohol swabs she brought, and walked off to find a needle while it dried. No masks, no specially sterilized gloves or kit. It seemed sterile enough, and almost makes the whole rigmarole they go through at Mayo Clinic feel silly. Almost.

The needle is also different than the one she's use to at Mayo and this one hurt more. I think maybe it's a bigger gauge. The nurse explained things so quickly and simply that some of the meaning was lost, and she was in such a hurry we didn't stop to question her. All I could gather was that this needle was "bigger" and inserted "at a different angle" so it would be "more comfortable." Nonetheless, it seemed to bother her from time to time throughout the day. We saw someone there getting chemo through an IV in their vein and it looked like so much trouble placing the IV, and then after that it wasn't working right and they had to find another vein. We both felt bad for the woman. A port is such a better solution. It hurt at first with Mayo Clinic as well, but they explained to us that over time it lessens, and it did so until it was completely painless. So we assume it'll get more comfortable over time like before.

The infusion took roughly two hours and they changed the drugs several times. She started with a quick dose of the steroid Dexamethasone. They told us that Karen is going to want to mow the lawn when she gets home. She didn't have that much energy, but she did seem a least a bit energized. It also makes her anti‑nausea medication work better. The whole of the treatment was pretty painless for Karen, except she had a hard time getting comfortable in the chair. It doesn't go back far enough to feel like you're laying down and she doesn't like to be sitting upright for long periods of time without moving around. We got up to walk down the halls of the building and that helped. The wireless was working fine today, which is good, but we mostly just talked anyway.

They had told there would be snacks for patients they could eat during treatment, but I warned her there probably wouldn't be anything there she could eat. So she brought along some apple sauce and a smoothie I had made and bottled the night before. Sure enough, everything there was limited either by her ostomy dietary restrictions, or her gluten intolerance. Although they did have Gatorade and bottled water she could have. They also have a coffee machine, so she had some coffee. Anyone, even visitors, were allowed to use the coffee machine, and it also made hot chocolate. I had three. They're small cups! She did get hungry while there and ate the applesauce, which is generally a very safe bet, but became nauseous immediately after.

When they had finished with everything else, they attached the pump that would deliver the final 46 hours of chemotherapy; we'll be back Wednesday to have it removed. It's a little bit bulky, but has a fanny pack attachment that looks cute on Karen. When it dispenses the chemo every couple seconds it makes a soft mechanical noise that sounds a little bit like a squeaky door opening somewhere off in the distance. It's the same noise the system at Mayo Clinic made as it dispensed medication into her IV, so she's completely use to it, and said she has to focus on it to hear it. We were told if there's ever a problem with the pump to simply call them there at Arizona Oncology. Since the pump is proprietary, if we go into emergency for a pump problem, not only are they probably never going to see their pump again, but the nurses at emergency will just end up on the phone with Arizona Oncology doing the same things we could have done over the phone.

All said and done, Karen says Mayo Clinic has spoiled her. The port access was so proper and clean, the nurse to patient ratio was higher, and the chairs that we saw "just looked so comfortable." But she says she's not upset with the treatment she received, and thinks it all seems reasonable. She says it's likely the norm outside of Mayo Clinic. For her, the additional half hour to and from the Mayo Clinic wouldn't be worth the more comfortable setting, additional personal space, and increased nurse attention, but seems to be second guessing herself, and I don't want her to feel bad about the decision. If we can be in and out in two hours then it seems worthwhile spending only one hour driving instead of two. We'll see if things improve over the next several sessions. If we end up changing, it's not a big deal. Everyone's professional, I don't think anyone will have hurt feelings.

I can only imagine the slower rate of chemo delivery that the pump provides is easier on her. She felt better shortly after, and her appetite returned. She was quite hungry so we grabbed some fast food while we were out. Everything still tasted fine to her at this point. Although she did get an ice cube stuck in her throat. It wasn't an I-can't-breath sort of panicked feeling, but more of that feeling you get when you swallow pills and you can feel them lodged in your throat. She drank some warm water from a bottle in her backpack and it went away. Turns out, there was no ice cube; her first experience with the increased cold sensitivity had just snuck up on her. She's been fine just drinking room temperature liquids since then.

Her thumb cramped up maybe an hour after that, but only that once. She's had some minor aches and pains throughout the day, mostly centering around her neck, but nothing too bad. Later in the evening she realized that when she touches something cold, like something from the fridge or even cold water from the facet, it feels like she put her hands in a -70 degree freezer. Her fingers tingle a little and she has a burning sensation. She has experience with these ultra cold freezers at work, so that's what it made her think her of. It passed after roughly 5 minutes. Once again, this is the cold sensitivity they had warned us about. She said dinner was a little bland, and wasn't sure if it was due to the chemo, but sometimes when you're on a restricted diet, food is just a little bland. Before bed water began to taste bad, even bottled water. She says it's not a big deal, as long as she knows there's nothing wrong with the water she can drink it.

It's tricky figuring out how to sleep with the pump. Karen has no headboard or bedpost to hang the pump's fanny pack on as other people on the internet seem to have gotten comfortable doing. She's sleeping with the pump next to her pillow, but the IV tubing isn't long enough for her to turn over in the middle of the night without first moving the pump. At least that should make it hard to get out of bed without feeling the tubing pulling on her and yanking the pump out or knocking it to the ground in a half awake state while trying to get to the bathroom.

Possible Side Effects

Karen decided she wanted to have her chemotherapy with Arizona Oncology. She says the staff is very nice, which is important to her, and it came highly recommended. So earlier in the week we had a visit with the physician's assistant to schedule the chemo treatment - FOLFOX 6 - and to go over things like side effects and precautions.

Starting on November 18th, she will be receiving chemo every other Monday, leaving with a pump which delivers more chemo for 46 hours, and returning Wednesday to have it removed. She asked about having chemo Friday and the pump removed by a home health nurse or nurse at another location, but was told they couldn't do that. She seems quite eager to return to work, so hopefully the chemo won't prevent that. However, if it does, she says she'll certainly reconsider taking chemotherapy at Mayo Clinic.

There's the possibility of all the usual stuff you hear about: nausea, vomiting, diarrhea (or faster output for people with a stoma), constipation, and fatigue. We're told they are able to manage these side effects quite well. When you see someone with cancer who is bald, it's usually not from this kind of chemotherapy, but other kinds of chemotherapy or radiation therapy. It's possible there will be some hair thinning, but even then, it's not usually that bad, and might not even be noticeable.

And, of course, she will be immunocompromised once again. Just in time for the holidays! They say if she catches anything, if anything happens, no matter how small she might think it is, to give them a call right away. For example, even if it's just a cold, they wouldn't want it turning into an infection, and would preemptively prescribe antibiotics. Seems reasonable to me.

It's also likely she will have numbness and tingling in her fingers. This is suppose to go away shortly after each chemo session, but it sounds like everyone is different as to how long after. It's even possible that the loss of sensation could start to become permanent, lasting from one session to the next. This would indicate that she's heading towards permanent nerve damage. However, if that starts to happen, they'd just switch the chemo drugs around a bit.

One of the more unexpected side effects will be cold sensitivity. It will last from the start of chemo, to 72 hours after the pump has been removed, possibly longer. The cold sensitivity not only be to things like food and drink, but to things she touches, such as cold car keys or objects in the refrigerator or freezer. She has freezers at work, but she says there's special gloves you use for that anyway. So this shouldn't be a big deal.

Another one that surprised us was the taste of metal in your mouth, and a sensitivity to the taste of metal in foods. The physician's assistant suggested we get plasticware and glass or stone cookware to help avoid that metal taste, and suggested chewing gum to get the taste of metal out of your mouth. She's also expected to have a change in taste buds. She might dislike things she normally likes to eat, and may start to like things she didn't like before. Tastes usually goes back to normal after treatment ends.

I think the scariest sounding possible side effect was short term memory loss. It doesn't sound incredibly common, but I never like to hear about things messing with your mind. We were told even if it happened, it's generally not debilitating, and you can learn little tricks to work around it. So far all of these side effects are temporary, but I wish I had thought to ask if this one was potentially permanent.

Afterward Karen told me she's actually excited to start chemotherapy. Not because it sounds like fun or anything crazy like that, but because it's one more step towards being through with cancer.

Hot Hot Hot

Last week there was an appointment with the gynecological oncologist we saw on our first visit to Mayo. He also performed the hysterectomy part of the surgery done on September 9th. The biggest issue affecting Karen's quality of life are hot flashes. She gets anywhere from 10 to 15 a day, which is roughly one an hour. It's not only uncomfortable, but it's starting to keep her up at night.

Before they knew the source of the cancer, the only thing they were sure of was that there was cancer on the ovaries, which raised some concerns over hormone replacement therapy. Those sorts of cancers often have hormone receptors which, when activated, can encourage their growth, making it an all around bad idea to give such a patient estrogen. However, since the cancer turned out to be colorectal in origin, that doesn't necessarily rule it out.

So the doctor wrote Karen a prescription for 1 mg of Estrace, which is a naturally occurring estrogen. It's the smallest dose possible, but we were told if it doesn't take care of the hot flashes, he can up the dosage. The caveat being, before starting the Estrace, it has to be approved by the oncologist we're working with in charge of the chemotherapy and subsequent follow up care. I left a message with his office, but we're still waiting on a call back from him.

Silly Urologists

Karen had a couple of appointment with urology on Halloween, but she woke up feeling bad and ended up with a migraine. Overall, the bad days are fewer in between, which is good, but still they tend to run together. Her migraine medication allows for a second dose if the first one doesn't do the trick, and she ended up taking both, but she doesn't like how it makes her feel when has to take the second dose. She passes in and out of consciousness, and feels "loopy."

The appointments were actually scheduled while she was still in the hospital. When she peed she couldn't void completely, and even a catheter couldn't get the last 200 to 250 ml out. No one seemed to believe the catheter wouldn't drain the bladder completely, so everyone kept coming around to try their hand at. We had two different doctors and more nurses than I could count attempt it. Some flushing it, other's just trying to put it in further or less far, holding it at a certain angle, trying a thinner catheter, a straight catheter, you name it. But nothing worked. The bladder scan never showed less than 200 ml. Ever. Looking back, it was arguably the worst part of the care Karen received at Mayo Clinic Hospital. I'm sure some things felt worse than all the back and forth with the catheter, but you could tell it was not only painful but stressful as well, and they never got it to drain. There were way too many attempts made. All that pain and stress, for naught. The day they released her they scheduled a flow test and a follow up directly afterwards, but they scheduled it over a month off, on October 31st of all days.

We assumed the long delay was just to let the swelling from the operation go down, for things to heal up, and to make sure any medication that could be giving her side effects were out of her system. After all, everything seems to be working now. Karen says she doesn't feel like she's retaining anything when she pees, but that's how it was near the end of her stay in the hospital as well; it felt like she was voiding completely, but they'd want a bladder scan just to make sure, and then that would show otherwise (and here comes someone with a catheter). So I suppose it's possible she's still retaining.

I called to reschedule and was told the earliest they could get her in was December 25th. Oddly, it didn't strike me as Christmas until later, what hit me first was the huge delay until she could get in again. Two months! Maybe we assumed more from that initial delay than we should have. The scheduler could tell I was surprised by the delay and said if I talked to the office directly, they can sometimes open up an earlier slot, and offered to transfer me. Sure enough, they made an opening. November 26th. So we went from Halloween to Christmas, and then to the Friday after Thanksgiving. Karen joked that they must only work on holidays.

General Visit

Late last week we had become concerned about some larger purple bumps forming in a couple places along Karen's incision and scheduled an appointment to see the general physician. That visit was yesterday. Karen had a CT scan directly preceding the visit with the chemotherapy specialist last Friday. They didn't expect to find anything; it was to be used as a baseline for comparison against future CT scans, to see if cancer is developing. However, the general physician was able to tell from that CT scan that there was some fluid build up along the incision. He lanced the areas and drained them. It was clear fluid and not infected, but said it's best to let them drain.

Since he was looking at the CT scan he said it was clear of cancer, as should be expected at this point. He also said that while he didn't see a fistula, he couldn't rule it out. However, the treatment for a fistula is an ostomy, which Karen already has. So while there is reason to be concerned about it, it's just something to keep an eye on for now. Lastly, he seemed pleased that Karen's weight loss has all but stopped - less than a pound a week - but he would like to see her gaining weight again before starting chemo, as that is likely to cause weight loss as well..

Seasoning

We met again with the chemotherapy specialist last Friday. He came to the same conclusion other doctors had, that Karen wasn't quite healthy enough for chemo yet. She was still losing some weight - although less - and there was a new concern about a possible fistula. He had put some thought into the treatment and said it might be beneficial to add Avastin (bevacizumab) to the FOLFOX treatment he had originally recommended, after Karen had healed more, possibly several months into chemotherapy. It slows the body's growth of new blood vessels, which in turn, slows tumor growth. However, it also slows the body's natural healing process. Hence the delay in adding it.

When we originally met with the chemo specialist, he suggested that we might be interested in looking for some place closer to get the actual chemotherapy. The only Mayo location that currently does chemo is an hour away, and although it's only once every two weeks, it's still an hour of being in a moving vehicle directly following chemo. So yesterday we went to Arizona Oncology to meet with an oncologist there.

Karen seemed to like the place a lot. We saw the facilities there was someone sleeping while getting chemo, and they seemed comfortable, which made her happy. They have free coffee, tea, and hot chocolate, which is nice. The doctor we saw won an award in 2001 for being one of the top doctors for breast cancer in America; an award in 2002 for being one of the best doctors for women; and an award in 2005 for being a top doctor in Phoenix. While I liked the doctor, and she said she was more than happy to work with our oncologist at the Mayo Clinic, I'm not sure it's really the best choice.

I want to say the walls were really thin, but I think they were reinforced partition walls, and they met with the window in such a way that they left a big enough gap for you to hear from one room to another. While we were waiting we heard the complete conversation between a 70 year old woman, someone who sounded like her daughter, and our doctor, several rooms over. I tried not to listen, but the conversation was very easily overheard. The doctor had said they'd be using chemo that's more suited for older patients, and the daughter piped up and said, "You mean, more suited for seasoned patients." And the doctor politely corrected herself, and the daughter laughed. I hope when I'm 70, people let me call myself old. What's there to be ashamed of? I mean there's something to be said about living that long. Anyway.

The building itself can only be described as a big metal thing. While waiting to see the doctor I was sitting next to a window with shades and really dark tint, sweating. While Karen, sitting just the other side of me, was cold from the air conditioner attempting to keep the room a reasonable temperature. I'd thought of offering to switch places with her when she mentioned being cold, but the nurse who brought us in was very specific about who sat where. Karen's been having hot flashes, so the air conditioner was probably the better of the two places to be sitting anyway. The place also had really bad wifi, which isn't a big deal, but if you wanted to watch Netflix or the such, you probably aren't going to have much luck. The chemo facilities only had one TV for everyone, so you probably weren't likely to be the one watching what you wanted to see. And the place is only open Monday through Friday, so that rules out the option of getting chemo on Friday and having the pump removed on Sunday. Karen had wanted to work Monday through Thursday and just be out Friday, but that doesn't seem very likely with this location. Everyone is saying chemotherapy starts out easy, but gets more difficult over time. So perhaps she can make it work for now, but this will be a source of conflict if we go with Arizona Oncology.

Staples Gone

Karen had an appointment yesterday with the general surgeon who performed the original 9+ hour long surgery and the follow up ileostomy. Finally, the last of her staples came out. The doctor thought it was best to put chemotherapy off for another week or two until Karen had recovered some more, and had more energy. The doctor also expressed concern over her continued weight loss and once again suggested she get a scale. Karen's always just used a tape measure to watch her body weight, which actually makes a lot of sense to me, with muscle weighing more than fat, you can put on weight working out but still be healthier than before. But that's not good enough for the doctor. I told Karen we're going to have to get a scale but we can Office Space it when she's done with cancer.

Earl came home today. He threw himself at the sliding glass window when he saw Socks out there. While Earl's first attempt to penetrate the glass startled Socks, he didn't run off until Earl's next attempt several seconds later. We're keeping the doggy doors closed and putting Earl in his muzzle when we let him out. Earl's scared Socks off the wall a couple times now, and away from the glass door again just minutes ago. I'm worried after we're comfortable enough to open the doggy doors, Socks won't see Earl around and try to come in again. Every time Socks got in and we'd pick him up to toss him out, he'd purr and purr the whole way, just being held. I hope his fear of Earl is greater than his desire for attention.

Socks

Karen holding Socks up in the air. He's very docile.

One of the stray cats we call Socks has moved into the backyard. He also likes to come in through the doggy doors. He's a pretty nice cat and even enjoys hanging out with Cera, Karen's oldest dog. But Earl will be coming home soon and he thinks knows cats are delicious. So we'd really like to find a home for him. He's neutered and has his rabies shot. If anyone is interested in an adult male cat, you can get in contact with us as you usually would, or email us here.

Socks and Cera striking a pose!

When we first saw Socks he was a pretty decent sized cat, but he lost a lot of weight before he broke down and starting eating the food put out front. I don't know if his original owners moved and left him behind, or just plain ol' kicked him out. Either way, he seems to want nothing more than to hang out with people again. The only time he isn't trying his hardest to get in, is when we're outside.

Trip to the ER

Karen has been having increasingly more intense gas pains. We were trying to be extra careful with what she ate. We tried probiotics along with beano or lactase pills whenever either applied in the slightest. But it seemed to get worse and worse, no matter how careful we were. After reading about other peoples' experience online we figured there was a good chance it was a partial blockage in her intestines due to the new stoma. Karen knew we had a couple appointments today, so she decided to just wait it out and talk to the doctors about it.

At roughly 2 am Karen woke up in a lot of pain. She had suffered through these pains before and it always seemed to pass. So thought she'd try to ride it out one more time. However, for 3 hours there was barely any output from her stoma; nothing but a little, almost clear liquid. A few minutes past 5 am, the pain became too much. It would spike to a 9 out of 10 or so, before going back down a little. She was getting more and more nauseous, and ended up vomiting. It took some of the pressure off of her stomach, which had felt so bloated and painful, but it was only temporary relief.

We contacted the 24 hour line to reach the doctor on call, but after a few minutes of waiting for a return call, we realized that no matter what he said we were going to have to go in to emergency. He did return our call on the way in, but there wasn't much to say other than we thought there was a blockage and we were heading in. We went to the Mayo Clinic Hospital and were pleased with the short wait. There was probably no more than 5 minutes waiting, and then 5 minutes of a nurse asking questions and gathering her history. Then, a couple minutes later someone came in to take us back to a room. They apologized for the wait and said they had a lot of people come in right before us. We were surprised they apologized. It was probably the shortest wait time I've ever seen - or hear of - from the waiting room to the emergency room. So the extra time spent heading out to Mayo was certainly worth it.

While it sounded like a blockage, they wanted to make sure they knew what they were dealing with and they lined Karen up for a CT scan. They gave her Dilaudid - the one that's a derivative of the morphine family - to get the pain under control, and anti nausea medication to help with the nausea. And then to prepare for the CT scan, they gave her a fairly decent sized bottle of contrast to drink. Omnipaque to be more specific. I guess the thing has a reputation for making you go. Sure enough, out of no where, the stoma started emptying. They schedule the CT scan an hour after you drink the contrast, but she was so backed up they were still able to see that there had been a blockage. Karen said she worried for a moment they might have thought her crazy. But they said they see this happen all the time with the contrast. We asked for some contrast to go, but I guess it's a better joke than request.

We think we've narrowed the culprit down to a bagel she ate on Thursday. It's actually a pretty big no for someone with a new stoma like her's, but she really loves bagels and thought just eating half shouldn't be too bad, especially since they had encouraged her to eat more fiber at one point. Lesson learned. The reason it wasn't obvious from the start was because Thursday was also the day her Percocet prescription was officially halved and we had started to cut back on it. It was also around the time we realized Alieve was working better than Advil for her pain. So it was masked fairly well, and we didn't know what was to blame for what.

I also mentioned that Karen had two appointments this morning. But of course, we were in the ER and weren't able to make it to the building next door. The first appointment was with the doctor who did the original surgery. He - and his "entourage" - came to us for the appointment. And on top of that, they stopped in just after the CT scan had finished, so he was able to provide us the results I mentioned earlier, and then do the rest of the exam. They ended up removing most of the staples, but left several in at a couple areas where her incision had been healing the slowest.

The second appointment was to be with an ostomy and wound care nurse. She, too, came to see us. Karen asked if there had been another option for dealing with the blockage, as she had read something online about flushing stomas, but the nurse said they didn't do that for her kind of stoma. So even if she had been able to hold off for that appointment with the ostomy nurse, it doesn't sound like it would have done any good. In the end, it turns out all we could have done is reverted to a liquids diet until the partial blockage had cleared on it's own. This is certainly a learning process.

While it had slowed down a bit, with things moving, they made sure she could tolerate a liquid diet and then released her around 12:30 in the afternoon. She is feeling a lot better now as far as the pain goes. There's still some nausea cropping up from time to time, but she's still backed up a little as well. All said and done, I think we will see much fewer bad days in the mix as we figure all of this out.

Chemo

Today we met with an oncologist to discuss chemotherapy. He said, with the kind of cancer Karen had, and with it as developed as it was (stage 4), the risk of recurrence or progression is "extremely high." Even with chemo, the odds are still pretty good it will happen again. But, it's less likely. He says there aren't any clinical trials that might apply to her treatment, but the most common treatment has been pretty much standardized on for many years now. That's chemotherapy with fluorouracil in conjunction with the vitamin leucovorin, which makes the chemo more effective. And since it's advanced cancer, they use oxaliplatin as well. Collectively known as FLOFOX. She would come in, get 4 hours of chemotherapy, and then leave with a pump which would continue to deliver chemo for another 46 hours. This would happen every 2 weeks for 6 months. They can be less aggressive, but at her age, they don't feel it's worth the gamble of not being as aggressive as possible. She's young so it shouldn't be all that rough on her. He also said, with this kind of treatment, it wasn't even likely she would lose her hair. It sounds like she's up for it, and we've scheduled another appointment in about 3 weeks to make sure she's healthy enough and to go over things one more time before starting treatment.

The home health nurse only just showed up again yesterday. There seemed to have been some sort of snafu and the home health company "lost" Karen. It wasn't until Karen mentioned it to someone following up from the Mayo Clinic that they made contact again. The ostomy supply company also "lost" Karen, and we had to resubmit an order for supplies. The nurse that came out yesterday said they're the ones who should have submitted the order. We did get a starter kit, but have yet to receive the rest of the supplies. Not sure what we'll do it stuff doesn't arrive soon.

When Karen was (almost not) released last Friday, the doctor said there were going to be good days and bad days. And for her not to compare today to yesterday, but to think back to how she was a week ago. That said, it turns out there's been more bad days than good days. Karen's found that naproxen works better at relieving her abdominal pain than ibuprofen, so that's good. She is using slightly less Percocet, but a lot of the pain is from the gas in her intestines now. Those pains are much sharper than the abdominal pain she's use to, and the Percocet just doesn't do much for that kind of pain.

She seems down about how slow things are healing, and now it seems once she's just about recovered from the surgery, she's going to have chemo to deal with. Her heart rate still sits in the high 80s. I'm not sure when that will return to normal. I've seen her at 63 before. I've also noticed when the nurse takes her blood pressure at home it's in the 90s, and at the Mayo Clinic, it's in the 110s. That says something about all of this.

Brand New Day

Karen had a bit of trouble with pain last night, but managed to get some decent sleep anyway. She says it wasn't great sleep, but certainly better than she was able to get in the hospital. The doctors said recovery will be really slow, and it may feel like you're not moving forward, but to try not to compare one day to the next, and instead to think back to how you were a week ago.

What she found helped with the pain a lot at the hospital was to use a heating pad. So she put her heating pad on her stomach and fell asleep, only to wake up to burning hot staples. The hospital had an amazing heating pad that was temperature controlled with a water system which maintained a solid 42° C. It's comfortable enough to put directly on your skin or the clothes/gown directly above it. The one she owns is just a standard electric heating pad, so it gets to a much hotter 76° to 82° C, and can get too hot, even through layers of clothes.

A home health nurse came by today to set up future home health visits. It looks like there will be 3 visits per week for 2 weeks, and then 1 per week for another 2 weeks. They took her blood pressure and it's back to it's usual borderline hypotension. It was actually 86 over 52, which is lower than it's been the entire time she was in the hospital, but not unusual otherwise; so it would seem returning home has dropped her stress level greatly.

Some ostomy supplies were suppose to be delivered, but no order seems to have been put in - which is strange because they had called us about dropping off supplies a week ago. It seems like the social worker is to blame. We only saw her one other time before we left, and she didn't seem to keep up on what was happening.

Home Sweet Home

Well, we're finally out of there. They gave Karen some simethicone - you probably know it as gas x - and we just waited it out. They gave her the option of staying another night, but she was ready to go home.

SMILE and Grimace

While we were waiting on the release, 1:30 rolled around. Every Friday, from 1:30 pm to 2:30 pm, they play a BINGO-like game called SMILE. Instead of straight lines you have to make shapes; for example, a smile. Last time Karen won $12 in gift cards, this time she won $8 and I won $4.

Unfortunately, during this time Karen began having really bad abdominal pain. The two possibilities they are floating is either too much fiber, or gas issues. Either way, they seem to think it's related to eating food. It sounds like they want to hold onto her till 5 now to make sure it passes. Some of the nurses have been speculating that she won't get released till tomorrow now, but we haven't heard anything like that from the doctors. We're still planning on leaving.

Going Home

Karen is being released today at noon, but you know how the paperwork goes. She's on the maximum allowable Percocet dose, ibuprofen, Pyridium (for the bladder and urinary pain), and prilosec (to keep her stomach acid in check). They're going to prescribe her a nebulizer for home since they don't feel she would be able to use the rescue inhaler effectively with her diminished lung capacity.

She still gets up to a 5 out 10 on the pain scale from time to time, and she's having more pain around her stoma. The bladder still never drops below 200-250 ml or so, which seems to be an issue since the surgery. We saw increased urine output after switching switching pain meds, and Karen felt as if she were voiding more. But she still had quite a bit of pain, and shortly after posting yesterday, they did a bladder scan (using ultrasound) and found 243 ml in there. This caused quite a bit of emotional distress for her. It can get very painful and she was worried they weren't taking it serious enough. They've said since she's peeing frequently, and doesn't feel the urgency to pee afterwards, there's no need to be concerned. They've even gone as far as reversing their earlier recommendation to learn how to self catheterize, and are suggesting she just keeps doing what she's doing for a couple weeks and see if things improve on their own.

With all the excitement of leaving I almost forgot an important step in her recovery, solid foods. That was the last real hurdle before being dismissed. Karen had been building up to it for a while, but was a bit apprehensive after what happened last time. She started solid food yesterday with a late breakfast: a small bowl of cereal and an egg. They brought her food for lunch but she wasn't hungry yet and didn't want to push it. She ordered peanut butter and jelly with a side of peaches for dinner. They say her appetite will eventually return to normal. Breakfast today was the same, but with two eggs instead of one.

Soon

Yesterday Karen's diet went from clear liquids, to liquids, which is a bigger change than it sounds like. They also dropped the Fentanyl and tried out some different oral meds before ending up on percocet. Her pain level was tolerable enough to sleep, either that or the does was just high enough to knock her out. Either way, she got some sleep last night.

They say Karen should certainly be good to go home soon. We're hoping Friday. She's off the TPN now, and is cord, tube, and IV free. She's getting around a lot better and her voice is getting stronger after having had the NG tube out for a couple days. (If you're going to catch her in the hospital, now is probably the best time to do it.) That said, they need to do more bladder scans today; if she's still retaining 200 ml of urine or more, they want her to learn to self catheterize before being released. They say retaining that much urine can result in an infection. And, of course, she needs to try out solid foods at some point.

Moving Forward

Karen was doing well enough with her clear liquids that they removed the NG by yesterday evening. It's easier for her to talk with the NG tube out. It looks like she may be out as soon as Friday, but barring anymore setbacks, she should certainly be out by Monday.

After switching away from hydromorphone (Dilaudid) to Fentanyl, she seemed to have better luck emptying her bladder on her own. Apparently this is a potential problem with most of the stronger pain killers. She's still retaining 250 ml or so, and they say you feel like you need to go when you get above 300 to 350, but rather than doing the straight catheter every 3 to 4 hours, she opted to simply go to the bathroom every couple hours. So she didn't get much sleep, but this is progress.

More Catheter Trouble

It seems like Karen never gets two good days in a row. The catheter had to come out and go back in again, but not without several painful attempts to get working again. There's been issues with urine retention, even with the catheter in, since the original surgery on the 9th. Even the doctors say they haven't seen this before, as the catheter bypasses the sphincter entirely and drains directly from the bladder. We finally got to see a urologist who saw nothing wrong with any of the scans and just thinks it still needs more time. Which leaves us unsure if we should be frustrated that nothing is being done about it, or comforted they don't think they need to go in and fix the bladder. This is her 5th catheter and once it stops working again, they will teach her to use straight catheters, which are usually disposable or single-use products. Hopefully this is temporary, but it makes Karen worried things might not change.

The night nurse decided it was a good idea to hook the NG tube back to the vacuum after the hydromorphone made Karen nauseous. The vent on vacuum whistled all night which combine with all the pain from the catheter problems kept Karen up all night. Her heart rate didn't drop below 90 again, but has hanging around 100 this morning. Still, with the heart rate going down, and in an effort to make her more comfortable, the EKG has been removed.

In the morning, the doctors re-clamped the NG tube and want to have it out tonight or tomorrow morning. She still complains about it, but I think she's getting more comfortable with it. She says it's so painful going in, she doesn't want it out unless they're sure she won't need it again. She's on clear fluids again, and is happily sipping away at a Ginger Ale.

Sleep!

Finally another night with good sleep. It's been almost a week, but like the last time she slept well, her heart rate slowed down to a more normal speed. It slowed to below 90 this time. It seems the sleep helps the most with that, but maybe it's the other way around and her heart rate dropping lets her sleep better.

I think she's finally getting use to the NG tube, she isn't constantly spraying her throat with chloraseptic and I don't see her wincing when we walk and the hose wiggles. Speaking of which, her desire to walk is coming back and we're walking more again.

They still seem concerned about her increasing tolerance to the hydromorphone. They raised the possibility of oral ibuprofen again, but that requires stopping the NG vacuum for 30 to 60 minutes, which isn't much longer than the walks we've been doing. So they feel at this point, maybe she doesn't need it at all anymore. At some point they're going to clamp it for 4 hours and see how things go.

I'm Hopeful

Karen still has the NG tube in. It was very difficult for her to sleep with it in. During the night her stomach started hurting pretty bad and by morning she was nauseous again. She asked them to flush the the line really well and it started going again. Her pain level fell drastically and she felt better enough to sleep afterwards.

She seems to be building up a tolerance to the morphine. Well, technically it's a derivative of morphine, hydromorphone. It doesn't seem to last very long anymore. One of the doctors mentioned stopping the NG vacuum for an hour or so to give her oral ibuprofen, aka Advil. They said they can't give it intravenously, but I don't understand that.

While they still encourage walking, we don't go nearly as much as before they put in the NG tube. We have to have someone unhook the tube from the wall, close the end that comes out of her, and then secure the tube to the gown. And then reverse that to reconnect. Not to mention, despite being secured to her gown, the hose wiggles when walking and it irritates her nose and throat. Throw the sleep and pain issues into the mix, and it's hard to get motivated.

Last night, after two weeks of no solid food, and an on and off again - but mostly off - liquid diet, they decided to give her total parenteral nutrition, i.e. nutrients via IV. I'm not sure why they were resistant to the idea before, but I'm sure they had their reasons. Hopefully it's not much longer till she can eat again.

NG and SMILE

Karen has been nauseous on and off since the last update. She did vomit once more at night and again this morning. The doctors decided the best thing to do at this point was to put the NG tube back in and drain the contents of her stomach. She really hates the NG tube, but she was tired of the nausea and was ready to try anything.

Despite being fairly miserable overall, Karen's had a couple good hours here and there yesterday. She won $12 in gift cards for the gift shop playing BINGO SMILE. (And, of course, I won nothing.) We did do a lot of walking together, which is always nice. Sometimes we even went for 30 minutes at a time. Her incision is looking better and she was quite pleased to be allowed to shower for the first time since Tuesday's surgery.

Tough Going

Karen's been vomiting about once an hour and pretty much everything that went in has come back out. The doctors feel this is an ileus, and the bowels haven't completely woken up from her last surgery. They were overly optimistic in allowing her solid foods so soon. So for now she's been taken off liquids and solids, with the exception of a few small sips of water.

She was taken off the IV pain meds this afternoon as scheduled yesterday when they saw her pain level dropping. But with her puking up all her oral pain meds, she's in more pain than usual. They did eventually realize the problem and they gave her something intravenous. They're also pretty sure she's puked up everything she ate, and so that's over with. Once her stomach has calmed down a bit more, she will start back with a liquid diet again.

Bump in the Road

Karen finally got to eat some solid food yesterday; so that was 12 days without solid food. Unfortunately it made her nauseous and one of the anti nausea drugs made her loopy and dizzy, which left her stomach feeling unsettled. Needless to say, she didn't get much sleep last night. When they brought her breakfast, she lost her dinner. Skipped breakfast, and it happened again a couple hours later.

Yesterday I was happy to see her heart rate so much lower than it had been, but it slowly went back up throughout the day. Starting just below 100 when sleeping, hanging around the low 100s in the early morning, and climbing back to the 120s by evening. It didn't drop as much last night with the lack of sleep and stomach issues. Someone said another HIPEC patient had such a fast heart rate for so long they finally sent him home on beta blockers.

Progress

Karen's pain level has slowly been coming down, and she's had one of her best nights yet. Her resting heart rate has been in and around the 120s since the initial surgery on the 9th, and was as high as 145 yesterday, but is finally dropping below 100. And she's eating broth now - the breakfast of champions - and if things continue as they are, she might get to eat some semi-solid foods by the end of the day. Karen hasn't had solid food since the 7th, a few days before surgery due to a preoperative diet. Other than a bit of a fever at night still, things are looking great.

Another One of Those

Karen is back to her nights of broken sleep. The pain is, as you'd expect, worse than before the surgery. But she has a PCA again, so she can push a button to get morphine when the pain picks up. The downside is waking up after a short time in a lot of pain because you haven't been getting the morphine. Her heart rate is also more elevated than usual, but they say it's from the surgery.

Also, because she got the blood transfusions, she is even more immunodeficient than before, so even when she's out of intermediate care, they're asking for no visitors who are coughing or sneezing.

Out of Recovery

Karen's now out of recovery and in the intermediate care unit. She seems to be doing alright on pain. Her vitals are certainly better this time around. She also says she's able to breath better now; so maybe the air leaking into her abdomen was pushing up against her diaphragm before this?

Surgery Complete

The doctor says Karen's surgery went well. They found the source of the leak. It turned out to be her colon after all. It was in a section where they had removed a large tumor, and with the chemo from the HIPEC, it was unable to heal completely and had reopened. Her body was doing an amazing job keeping it in check, but the doctor said leaving it to see if it healed on it's own was added risk - and pain - Karen didn't need. They performed a colostomy an ileostomy, and she will need to have the stoma for 3 months. After which, they can reattach all the plumbing and things should work as they originally did.

Once More Into Surgery

She finished her second unit of blood less than an hour before wheeling her out of pre-op and into surgery. The operation is an exploratory laparotomy, and due to the nature of the surgery - exploration - they've not given us a time estimate.

Rescheduled

Karen's surgery has been rescheduled to 3:30 "or" 4:00. Seems someone else out there always has it worse. The first unit of blood is done and they've started on the second. So far that looks good, no reactions. An ostomy nurse has been in to mark a location for a possible (but unlikely) colostomy. Her pain level is still somewhat reasonable and she's been sleeping a lot.

Sleep and Surgery

Karen got a good night's sleep for the first time since the surgery. Her pain level is down to a 3 out of 10, also near to the best it's been. They did an x-ray of her abdomen and noticed more air than last time. More air tends to mean the hole is getting bigger instead of smaller. Since the fluid was sterile the leak is probably higher up in the intestine, or may even be a perforation in the stomach. This could potentially be very bad; so the doctor who did the majority of the surgery last time, wants to do an exploratory surgery to look for the leak. Karen said while she is feeling better, something still feels wrong, and agreed to the procedure. This means she will need the blood transfusions after all, since she will lose more during the operation. The surgery is scheduled to start at noon, and she will be getting the transfusion as soon as possible.

No Blood Given

The doctor who performed the larger part of the surgery on the 9th came back in from a conference. He was the one everyone else was waiting on. He says since the fluid they removed is sterile, there's nothing urgent happening there. The bigger concern is the air. He said the pain seems to be in the same areas as the air. To have that much air a week after surgery, there is most likely a small leak in the intestines, but too small they can't see it on the CT scan. He says the only way to know for sure is to open her up to see, which is overkill at this point; the body will close small holes just fine on it's own.

He also canceled the blood transfusions. He said the risks and negative effects on the immune system outweigh the benefits, especially for cancer patients.

Lab Results

It doesn't appear the fluid is from a leak in the colon or intestine because it was steril. This means a surgery is unlikely after all, although more doctors are reviewing the results. We should know by tonight what they will do. Until then she's still NPO, so, no liquids.

They've decided to upgrade the blood transfusion to two units.

Back From Ultrasound

They took Karen to a steryl ultrasound room where they extracted roughly 60 cc's from one of two pockets of fluid they found. Lab results will take roughly 1 to 2 hours. It's looking more like a surgery will be necessary. During the ultrasound they also found she's retaining urine, so she's getting a catheter yet again. Third time's a charm?

Blood work they ordered this morning just came back. Her hemoglobin is low and they've decided to give her one unit of blood (450 ml).

Peritonitis

The CT results are in and it looks like she has fluid in her abdominem. They called it peritonitis, and is most likely the cause of the fevers. They will remove some of the fluid with a needle, guided by ultrasound. It will be analyzed to find the content and source. No ETA on when they will do this or when they'll get the results, but it should be fast. Best case scenario is it's just leftover water from the surgery, but that's pretty much unheard of after 7 days. It could also be an abscess or a leak in the colon or intestines. If it's the later, she will need surgery again.

Trouble

What started out as a good night for Karen took a turn for the worse. It seemed like she was finally able to sleep well, but it didn't last. First there was some stiffness and (more) soreness. That was followed by chills and sweats, and then a fever of 103 °F. She seems to have some kind of infection. They're worried it's related to the operation, but they took out the catheter just in case it's a bladder or urinary tract infection. She's able to void without it, so that's good. They took her off fluids again, but she does get to drink a bottle of disgusting contrast for a CT scan.

Scary Night

Karen had an asthma attack last night. She didn't have a rescue inhaler so she had to wait for the nurse to call the doctor and get someone over to do a breathing treatment, which was torturous for her. She was having trouble breathing, but just had to wait. They put oxygen on her immediately and her oxygen levels were ok, but not being able to take anything but a shallow breath really left her rattled. To compound the fear of not being able to breath, they aren't going to give her a rescue inhaler, just regular breathing treatments. They're suppose to negate the need for the inhaler, but the idea of it happening again without her having a rescue inhaler really made her anxious. They gave her something (lorazepam) to help her calm down.

They're not sure what triggered the attack, but it could be pain induced. Overall, the pain meds still aren't cutting it. The only good thing about this is the lorazepam knocked her out, so she managed to get some sleep when all was said and done. She has some visitors coming today but is thinking of telling everyone to wait a couple more days.

Pain Again

It's been a couple days since they halved Karen's morphine dosage, so yesterday evening they took it away entirely. They're trying to get her off the IVs and on oral pain killers. They put her on Norco - which is pretty much the same thing as Vicodin - but it just wasn't cutting it. Her pain level slowly climbed all night long and they eventually had to give her morphine again, but only every couple hours, not as a constant drip. So, once again, it was another rough night.

On the positive side, she was doing well enough that they didn't think she needed the morphine. She's completely off the oxygen. She's eating broths and Italian ice now. Oh, and she's even walking without a walker now. The PT guy "signed off" on her, which means she's free to get up and move or walk around without supervision.

Looking Good

Karen's doing a lot better. She has started getting up a couple times a day to walk around, and only needs oxygen intermittently at this point. She's allowed - and able - to drink clear liquids now; which also, somehow, includes black coffee. She's still not sleeping very well, although ironically, had a good long nap after finally having coffee again.

They are back and forth with the catheter, removing it then putting it back in. But other than that, things are looking good.

Vitals Have Improved

Karen's been moved out of the intermediate care unit, into a - more or less - regular unit. The area she's in is still extra cautious about her catching something, same rules about no flowers, and oddly enough, you're not even allowed to touch the doors leading into her ward. You have to wave your hands in front of a sensor to open them.

Her pain level had been going down, so they cut her morphine dosage in half. So she's in more pain again, and still not sleeping well at night. They tell us that it's likely an issue with her sleep cycle, although I'm sure the pain is still part of it. On the positive side, with less morphine, she is more alert and coherent.

Another Night

Another night with ups and downs. During the day she manages her pain by pressing a button every 8 minutes when she's in pain to administer morphine - more specifically Dilaudid. But at night, when she falls asleep, she'll wake up in less than an hour in a lot of pain because the pain medication has worn off. So she'll fall asleep at a 4 out of 10, and wake up at a 7 or 8 and not be able to get it under control again for quite a while.

The good news is, despite being sleep deprived, she does seem to be in less pain overall. They've also just taken out the tube that vacuums the acid from her stomach. So that should make her more comfortable as well.

Long Day

It's been a long day. There's been some painful moments, but it's been back and forth. As of now they've got the pain down to a reasonable level and she's resting calmly. They haven't let her sleep much during the day to try and get her back on a proper day night schedule. While they wouldn't turn anyone away, they'd prefer if you waited till she was out of the intermediate care unit before visiting. She's expected to be out by Friday. I also found out they don't allow flowers for the patients on this floor.

Rough Night

There's been some trouble managing Karen's pain level. When she woke from surgery she says, on a scale from 1 to 10, her pain level was a 12. While they did bring it down, she's back up to a 7 out of 10 and hasn't been able to get much sleep.

Out of surgery!

Everything went well! The second doctor was very happy with how things went. She's in recovery now, but it will probably be another hour or two until she's off the breathing tube and out of recovery.

So Far, So Good

The second doctor has completed the cytoreductive surgery and has begun the final stage of the surgery, the HIPEC. There's roughly 2 hours in surgery remaining.

First Doctor Finished

The first part of the surgery is complete. The doctor said everything went as expected for his part of the surgery. The second doctor has begun his part of the operation.

Surgery Has Begun

Karen has just been wheeled into the surgery room. Initial delays were caused by the surgery before her's running over.