Hospital Update #12, June 23, 2023

 Early yesterday morning, Amanda suddenly bolted upright, startling me awake, and declared that she was hungry. We’d gotten a refrigerator after the first few days so that we could ferret away bits of her meals that she hadn’t finished, in case she (or i) needed snacks later. It was getting pretty full.

After everything we’d gone through over the last week and a half, this was refreshing. She demolished a fruit cup. When the nurse came to check on us, Amanda told her that, as long as her breakfast stayed down, she’d like to go home today.

Breakfast came. She ate more than half of it, and the waiting began. By 9 am, it looked like she was in the clear. She said she was ready. The nurse contacted the doctor about discharge papers.

Within a couple hours, she was hungry again. The nurse brought her a sandwich. She ate the entire thing. Her lunch arrived not long after, and she ate most of that too. Someone came to take her dinner order while she was working on lunch, as usual, and she told him she was not expecting to be there for dinner. He said to call him if anything changed.

Around 1:00, the nurse came in to tell us that everything was ready for us to leave, we were just waiting on the doctor to sign the discharge papers, and we’d be clear to go.

So we waited. And waited. Her food stayed down. She even had another snack.

The hospital social worker came in to let us know that, actually, Medicare was not going to cover the wheelchair. A physical therapist had visited Amanda at some point in the last few days while i was out of the room, and she had been able to walk from one end of her room to the other (they’re calling it 20 feet, but i do not believe it’s that far), and even though she needed to be held the entire way, Medicare declared she is able to walk, and doesn’t need a wheelchair.

Um, i’m sorry, what?

They provided a walker and a shower chair instead. The walker is entirely useless to her, she doesn’t have strength in her arms any more than her legs, so this isn’t really going to help her get anywhere. The shower chair is helpful, though.

The social worker did tell us that she had gone ahead and submitted for a $600 grant through The Change Reaction Fund on our behalf, which we were almost sure to get approved for. All that would be required would be to send a thank-you card. She suggested we use that money to get a wheelchair. We ordered one from Amazon, as well as a rollator, the kind of walker with wheels on all 4 legs and a seat in the middle so she can sit down when she gets too tired (after about 25 feet). Those should both be here tomorrow.

The hospital wouldn’t take the walker back. So. Um. I guess we have this thing now? We’re gonna see if we can donate it to someone in our RV park that can use it.

We waited and waited. We were starting to wonder if she should call in that dinner order.

She was finally discharged from the hospital at 5:15 pm. Only seven hours after asking.

We spent the night at the hotel with Tammi. We swung by home on the way to pick up Zuul. Amanda had wanted to take a shower, but she passed out almost immediately after we got into the room. Having been sitting at the hospital all day, i took Zuul for a 3 mile walk.

This morning, the social worker texted me to let me know that we’ve been approved for the grant, and it would be in the mail today. That’s incredibly helpful, that covers the wheelchair and rollator, as well as the massive parking charges i’ve racked up at the hospital and some of the overpriced and undersatisfying cafeteria food i’ve been eating all week.

We left the hotel and headed home, where i had a bunch of cleaning to do to prepare for her first meeting with the Home Health team. Today it was just one guy who came in to do essentially onboarding paperwork, going over the broad strokes of her medical history, taking her vitals, and assessing her needs. He set up appointments for additional members of the Home Health Care Team to make future home visits. A nurse will be checking in on her weekly, and a couple others will drop by from time to time.

Since they left, she’s been taking a nap. Our new bed was delivered while she was hospitalized. I slept on it one night while Tammi stayed at the hospital with her, but this is her first test run. I hope she likes it. I think it’s nice. I should also mention that we were able to afford to replace our mattress thanks to a monetary gift from the Marshall Lions Club, which paid for that as well as some other things to improve her quality of life as she continues her journey through cancer treatment.

Very happy to be out of the hospital. Tammi is with us for another two weeks, so it will be nice for Amanda to spend time with her mom on the outside for a little bit. After that we have more friends coming to visit in July and August, so we’re looking forward to that! Hoping to not be in the hospital for those visits!

Thanks everybody for all the kind messages and comments while we were in the hospital for nine days. I know i haven’t responded to all of you personally yet. There really have been a ton of them and my own energy levels have been almost zero through this. Like, i brought my laptop and notebooks to the hospital, thinking i’d work on some of my writing projects, but all i was able to do in there was scroll through memes on Tumblr and watch Bake Off. It’s been a nightmare. At least that part is over. Love you all.

We are leaving the hospital

 We are leaving the hospital

Hospital Update #11, June 21, 2023

11:50 am
vomiting again

11:35 pm
Yesterday was a rough day, and today wasn't much better. Several dry heaving episodes, but no actual vomiting, which is a huge improvement. She had solid food for all 3 meals and kept all of it down, although she didn't eat very much of it. 20-30% of her meals, a decrease from a few days ago.

This morning we were talking with the nurses about possibly going home today. It really seemed like a good possibility. Basically, they were saying that they aren't really doing much for her medically anymore, other than the constant IV fluids. For the other stuff (the constant fatigue, the vomiting, the lack of appetite), she may as well deal with that at home. They keep telling us that she knows her own body, she can decide when she's ready to leave...but then they says, well, we should probably get that vomiting under control first. So it's not really up to her when she leaves, is it? They made some more adjustments to her anti-nausea medications.

After lunch, it became apparent that leaving today wasn't going to happen. We're still hoping for tomorrow, but they've also said maybe Friday.

She met with an in-home palliative care team. They're going to be checking in with her periodically after we leave, hopefully they can help find solutions to whatever problems come up at home, including making additional tweaks to her nausea medications and preventing the vomiting.

I think today she's looked the most tired that she has since we've been here. Mostly sleeping. Hard to have a conversation with her.

Last night, Tammi stayed with her, and i went home to set up our brand new bed so it's ready for her, and do some work on the house, so she can come home to a nice, clean home. Tonight, Tammi took our car back to her hotel and i'm staying with Amanda again. Since i parked in a lot that's a bit of a hike and you have to weave a convoluted maze through the hospital to get to, i went get the car, and then Tammi came down to take it from me. In the 5-10 minute window after Tammi left Amanda's room and i got back up there, the other oncologist who we've been waiting to see for a couple weeks, since before the hospitalization, came by to see her. Amanda was not in any sort of condition to have a conversation, and couldn't remember anything they talked about, other than the fact that she was there. Great. Very useful. We've been here for eight days and she showed up at the absolute most inconvenient moment possible.

On the plus side, the hospital helped get her prescription for a wheelchair through, which Medicare is providing at no charge to us. It will be ready for us to take at discharge. That will be nice; at least i can get her outside and walk her around, so she can get a little fresh air a few times a day.

Really hoping to be home soon. But i just want her to feel better.

Hospital Update #10, June 19, 2023

1:34 pm
Tammi made it to LA to visit Amanda in the hospital! Zuul also got to come visit today!

11:56 pm
so many visitors today! after Tammi, Alyssa, and Zuul left, Chelsea stopped in for a while. She got moved from liquid diet to "soft" diet, ate a sandwich, some chicken, and some peas across several sessions. Still very low energy, but things seem to be looking up.

Sushi Koo

 i keep walking past this place when i go out for lunch and dinner this week, and i haven't eaten there, but please tell me i'm not the only person who's hearing this in Rick Derringer's voice.

Hospital Update #9, June 18, 2023

9:06 am
She's already vomited/dry heaved four times this morning. She's asked several times if there's anything else they can give her for the vomiting. They're looking into one more option, but it's an intramuscular injection, so it's pretty heavy duty. Waiting to hear back on that.

10:04 am
They're putting her on a liquid diet.

7:49 pm
liquid diet has gone down well today. she ate her entire lunch and dinner and hasn't vomited since. this morning's lab work was all normal: hemoglobin 9.2, potassium 3.6, calcium 8.9. she's slept most of the day, but when she's awake, she's been feeling better.

Hospital Update #8, June 17, 2023

 Things have been all downhill today. I'm not sure i can recount everything in order, but i'll try to at least list the events.

Of her dinner, she ate only about 3/4 of her applesauce cup. That's it. She had another dry heaving episode, but no more vomiting. Not really anything in there to throw up. She's been having heartburn all day. Slept a lot of the afternoon and evening, but we finished the episode of Bake Off that we left unfinished yesterday and made it halfway through another one.

They've decided to put her on a potassium supplement as well. They offer it with 2 options: orally, or intravenously. IV is preferable to her in this situation, since she has port access, and anything she takes orally is in danger of being expelled. However, we were cautioned that many people shy away from the IV version because it's rough on the veins and can cause a burning sensation, and the infusion takes 4 hours. She chose oral, and the nurse began preparing it; it has to dissolve in liquid before it can be taken. It was dissolving in apple juice when the dry heaving started. Amanda asked if the burning would still be an issue with her, since her port is a central line, and goes directly into the vena cava, rather than going the long way through the veins of her arm. It was discussed with the doctor, and they thought she shouldn't have any issue.

Her abdominal pain has been pretty constant today. When asked at around 10 pm, she rated at a 4-5, continuously, since she vomited at lunch. She was given her hydro, the potassium, and Zofran for the heartburn at about 10:45 pm, and went to sleep immediately.

The last 12 hours, she's been in the same kind of rough zombie state that she was in the weeks before we came to the hospital, mostly sleeping, always in pain, barely able to eat more than applesauce. She really wanted to get out of the hospital today; when that became obviously impossible, she set her heart on tomorrow. Now, even that is looking unlikely.

She said to me today that on one hand, she wished we had just left the hospital yesterday, when she was feeling good. I said if we had, and she took this kind of a nosedive today anyway, i would have hauled her ass straight back here. We later mentioned this conversation to her nurse, who made the excellent point that, while yes, the right thing to do would have been to return to the hospital, we would have then had to go through the entire ER process again. So, good thing we stayed.

Hospital Update #7, June 17, 2023

 She sipped half a spoonful of tomato soup at lunch and started dry heaving. She pushed the soup away, but was able to eat about half of her remaining lunch.

An hour later, she threw it all up.

Her calcium level is 8.9 today. It's no longer considered high, so that's great. However, her potassium level is a little low now. Not concerningly low, but they're going to keep an eye on it. Her hemoglobin has also dropped today, from 9.4 yesterday to 8.7 today. This is still in a normal range, but that seems like a quick drop. They're going to actively monitor that as well. Hopefully the next blood draw should establish if there's a trend.

They asked if she was having bloody stool, and she said no. Great that she's not, but a little concerning that they asked.

Hospital Update #6, June 17, 2023

 Yesterday was a really good day for Amanda. She woke up at 5am and she was AWAKE awake. She was awake enough and feeling so full of energy that she was...bored. Just so powerfully bored. She's still not able to go anywhere though, so we spent most of the day watching Junior Bake Off.

The hospital's chaplain came to see her later in the morning, offering religious services in multiple denominations...or reiki, which she's done with Raquel before. So i took a walk while they had a reiki session, which was good for her.

She somehow got put on a low sodium diet, which none of the nurses, the nutritionist, or the cafeteria staff could explain. The nurses were checking through her charts and couldn't see any reason why she needed it, but it was really limiting her food options, and she couldn't find anything she wanted to eat. As i've said before, she's been having a lot of food aversions in the last few weeks, so we really need to find options that she finds palatable or else they're not likely to go down, and if they do, they're definitely coming back up. The nutritionist and two nurses separately contacted her doctor to figure out if she needed that, and it took several hours to get a response, but it turned out that she had been flagged for low sodium by mistake. That opened up a lot more options, so she was able to get the vegetable lasagna for lunch. She liked it so much that she got it again for dinner! The desserts have been pretty great as well.

We had a long video call with Nat, Cal, and Marc that went well; she stayed awake and talkative and fully participated the entire time.

Alyssa, who works at this hospital, came in on her day off yesterday to spend time with Amanda. She brought her new home manicure kit and did Amanda's nails. Alyssa's doing the whole, "well i'm new at this so it's not as good as if you went to a professional" bit but it's like. Dude. They look great. She's very happy with them.

David sent her a package to the house, which Alyssa brought in for her. It's a LEGO flower arrangement! The three of us worked together to assemble it, and now it sits next to the flowers Tammi sent.

Alyssa stayed until about 10pm, and Amanda went to sleep after she left. She was awake the entire day, no naps. She was feeling really good the whole time. It was a good day.

---

This morning, she woke up early again, and was still feeling pretty good. Pretty awake. Pretty bored.

Then things started to go back downhill.

Fair warning, there's gonna be a lot of poop talk coming up.

I was still asleep when the nurse helped her to the bathroom this morning. She was feeling constipated, so she asked if she could get a stool softener. She had to wait for the doctor to approve it, which he finally did right about the time they were going to give her ondansetron. Ondansetron is an anti-nausea drug that she's been taking as needed for the last few years. The last couple days, they've been giving it to her about a half hour before meals, to help her keep food down. So she got both at once.

The timing was off though, the food took longer than expected to get here after that, and she started having pretty serious stomach cramps. Right as the food finally arrived, she suddenly needed to rush to the bathroom. She had what she considered a pretty normal bowel movement, and then was comfortable enough to eat her breakfast. She thought the episode may have been caused by having those drugs in there too long on an empty stomach.

Not long after she ate, she rushed back to the bathroom for a bout of bad diarrhea. Afterward, the nurse asked her to rate her pain from 1-10, and she said 5 or 6. For reference, when we first got to the ER on Tuesday, she rated her pain at 4-5.

They gave her hydrocodone, and i tucked her in for a nap. She dozed off for just a few minutes, then sat up, awake, asking if i want to play a tabletop game. I had brought a couple small ones just in case. She said she wasn't sleepy and she didn't want to take a nap. Within minutes, she was asleep again. Which is where we are now.

She's hoping all of this was caused by the Miralax, it's not the stool softener she's used to, and we've already seen during this stay how her body sometimes reacts to different versions of medications than her usual. Her body is a very fickle thing these days. We'll have to wait and see if she's better in the afternoon.

We were really hopeful she'd be going home today. Doesn't seem likely now. Hopefully tomorrow.

Hospital Update #5, June 16, 2023

9:30 am
 She's looking better this morning than she has in weeks. She's fully conversational, fully awake, she ate almost all of her breakfast. It's been nearly an hour and she hasn't thrown up yet, so it's looking really good that she'll be able to keep this one.

The doctor came in this morning. This is the first time i've seen him. He was only in the room for a couple minutes, but he says everything is looking good, and he trusts his patients to know their own bodies, so she should let him know when she feels ready to leave the hospital. She wants to be able to eat food and not throw it up. That's her main criteria. Once we're confident about that, hopefully we'll be ready to go home.

They did come in and take her orders for lunch and dinner. She thinks we'll be here at least one more day.

Things are definitely looking up though. Honestly, this is, for sure, the best she's looked in three weeks. Maybe five. I'm feeling optimistic for a change.

 

12:58 pm
this veggie lasagna looks incredible

Hospital Update #4, June 15, 2023

 Sorry, this update may be less coherent than usual. Today's kind of a blur. Not because a lot happened; quite the opposite, i just haven't documented much and i'm forgetting everything. Stress.

This morning was even better than yesterday on the scale of awake, alert, and cognizant. Whole conversations, feeling well, sitting up and keeping her eyes open. Blood was drawn around 6am, and her calcium value was 9.9, juuuuust in side that 9-10 range that we were shooting for. They did draw more blood around noon, but it's 9pm now and we still haven't heard all the results from that. Her hemoglobin was 8.9 though, which is great; she was a 6 before the transfusion, and it needs to be above 8.

We watched Bake Off until she fell asleep.

The MRI she was supposed to have at midnight had gotten pushed forward to 1am, and then to some nebulous "in the morning" time, then by the time they brought lunch up, it was supposed to be 3pm. She's not allowed to eat up to 6 hours before the MRI, so she wasn't able to eat her lunch. The nurse suggested that she eat and the MRI could be pushed to 6, but Amanda did not want that; she just wanted the damn scan done at this point, so she refused to eat. I bravely took one for the team.

After i'd finished her lunch, they moved the MRI up to 4pm.

This is where things started to go downhill. Shortly after that, the nurse helped her to the bathroom, and as she was sitting back down in bed after, she vomited, despite having basically nothing in her stomach.

At 1:30, unannounced, the imaging people showed up to take her for the MRI. All these delays and suddenly they're early.

She vomited again as they were putting her in the machine.

When she came back, the nurse ordered her another lunch, which surprisingly arrived within minutes. She ate a surprisingly good portion of it, probably 1/3 of what was offered. And then she vomited it all back up.

The nurses consulted with the doctors to get her meds adjusted, to try and get the vomiting under control. I overheard that they were still giving her oxycodone for pain management. I told them the same thing i mentioned in yesterday's update: in her experience, oxy has not been as good for managing her pain as hydrocodone is, and oxy has historically made her nauseous, where hydro does not. One of the nurses told me they could make that suggestion to the doctor, but he couldn't guarantee that the doctor would switch the meds. Later, he told us that he'd been looking it up and oxy is more powerful and fast acting, so it should be the better drug, but Amanda suggested that that's probably the problem. It's too powerful for her system, especially right now. Within an hour the doctor approved the switch, so she'll be getting hydrocodone acetaminophen (Vicodin) now. Hopefully this helps her keep her food down.

 ---

 it took me over 6 hours to write this. it's 11:45 pm now and my brain has stopped working for the day. i know there was more i meant to write in this update, but i'm blanking on all of it at this point. if i remember the rest of today, tomorrow morning, i'll add more.

Flowers from Tammi

Hospital Update #3, June 14, 2023

 They got her into an ED room around 12:30am last night. Alyssa stayed with her until almost 2 before heading home to get some sleep. Amanda was finally able to get some sleep herself once she was in the bed.

The ER doctor we had been sent here to see finally talked to her sometime before 7am.  He said she would probably be admitted to the hospital around noon, and that he was concerned her abdominal pains might be coming from an obstruction of the liver ducts. He also confirmed she will be here for a few days.

I had a few things to take care of this morning, so i didn't get to the hospital until 1:30. When i came in, she was sitting up, awake and cognizant, and we were able to hold a conversation for a while until a nurse came for her. She told me her hemoglobin is very low today, she thought they had said it was a 5. Normal is 8, they give blood transfusions if it slips below 7, so she would be getting one. It's funny, when i said "infusion" yesterday, my brother misinterpreted it as "transfusion" and asked about her getting a blood transfusion, only for me to be like, no, she doesn't need that. And now here we are. She also told me they would be taking her for an MRI to check for obstructions of the liver and gallbladder.

Calcium level is improving. As i said above, it was 14 at the clinic yesterday. They gave her those injections to bring it down, and by the time the ER drew labs later last night, it was down to 12.8. This morning it's 12.1. No one has said if this decrease is in line with expectations but it's definitely a positive trend. Shortly after i arrived, the nurse was asking about her pain levels, and she reported it was at about a 2. That's a significant improvement from yesterday.

They started the blood transfusion at 2:15. Despite being under 8 blankets, she was still complaining of being cold, but she soon fell asleep and was able to rest for a little while. About 3:00, she suddenly woke up and said her pain had crept up to like a 4-5. She said she hadn't been given any pain medications since 5am, 10 hours ago. For reference, at home, the last few weeks, she's been having at least tylenol about every 6 hours. On really bad days, hydrocodone at the same rate. Most days she only takes the hydro once, but this is the hospital. This is not "most days." She pushed the button to contact a nurse, and they were able to bring her oxycodone right away. They said they could get her hydrocodone, but they would need to put in an order to the pharmacy and it would take a while; she accepted the oxy instead, even though she told them oxy doesn't work as well for her and often upsets her stomach. She just needed something right away.

She finally got admitted to the hospital and moved into a private room at 3:30, after 26 hours in the ER. It took the nurses well over an hour to get through logging her into the system and getting everything set up around her in the room, but they brought her snacks and got her dinner ordered. This is significant, because she'd been complaining of hunger for a few hours, which is great actually, i'm glad she's hungry! It's so hard to get her to eat at all lately. But unfortunately, they didn't want to feed her, because of the impending MRI. Once she was in the room, though, the nurses informed us that the MRI has been pushed back to about midnight, so eating now is fine.

We're finally settled into the room, and the nurses have left us alone. She's sleeping again, though, so i'm not going to bother her for a while. She ate a fruit cup and half a sandwich, which is a decent amount lately. That's just from the snacks, her dinner is still coming.

First bag of blood is in, working on the second.

 

6:43 pm
Ate her dinner. Vomited it all.

Hospital Update #2, June 14, 2023

 [continued from this post]

 They finally got her in a bed at 7:40, after nearly 6 hours of waiting. Still not in a room, though; just a bed on wheels, parked in the ER outside rooms 8 and 9. Once she was tucked in comfortably, she told me to go and take care of the animals. I headed straight out, picked up Chelsea, and headed back up to the valley. Zuul's been bad lately, destroying things while we're out, so we've been tying her up to the drivers' seat of the RV while we're gone, with a dog bed, water, and (when applicable) her food in reach, and nothing else. Before i even put the key in the keyhole, i heard her scratching on the other side of the door. She had busted loose. Surprisingly, she destroyed very little, although i'm a little confused how she got the things that she did.

She had been left alone for 12.5 hours, meaning it had been 14 since she last went potty. I'd already made my peace with the idea that she had probably gone inside the house; miraculously, it doesn't look or smell like she did. She was very insistent on getting outside though.

Alyssa texted that Amanda had been taken for an ultrasound, but still not assigned a room. Before they took her, they'd had her on IV fluids, and she seemed more alert and perky with the fluids going into her.

We got Zuul to the dog run, i went to Alyssa's to get Ghost and Vinz. Everyone was good! Hooray for small miracles and all that.

I threw together a bag for Amanda quick, most importantly including all her meds. I checked in with Alyssa if Amanda would need anything else, and she said Amanda wasn't back from the ultrasound yet. That seems like it took a long time. We didn't want to wait around, so we booked it back to Beverly Hills. I was hoping they would have Amanda in a room by the time we got there, i wasn't sure they'd let both of us in to visit her on the floor of the ER.

As it turned out, no, they would not let Chelsea in at all, regardless of if she was in a room, because visiting hours end at 8, and it was 10. Only one visitor to the ER, and only immediate family.

Alyssa was sitting with her when i got in. Her shift was over, but she said she wanted to stay with Amanda until they got her into a room, if possible. Amanda was finally sleeping; she'd been complaining through the entire 6-hour wait that she was so, so tired, but there was physically no way to position her body in there to allow her to sleep, plus they kept calling her over to see nurses or phlebotomists or whoever else every 30 minutes-ish, so it's not like she'd be able to anyway. Given how much sleeping she's been doing the last few weeks, staying awake for the last 14 hours must have taken a huge toll on her. I didn't want to wake her up. As i was explaining the contents of the bag to Alyssa, though, Amanda did open her eyes; they were sluggish, including the lids, opening and closing independent of each other, and her head and mouth movements were in exaggerated slow motion. At least i was able to say good night to her. I couldn't stay, though; i had left Chelsea sitting outside the hospital and i should really get her home, plus the dogs would need more care tonight and tomorrow morning. So i left.

I felt bad that, after all that, Chelsea wasn't able to go in and see Amanda, but i'm glad she came with. It was nice to have someone to talk to. It was helpful.

When i got home, i took Zuul for a 2 mile walk, so she could burn off some energy and i could work out some of this anxiety. I checked in with Alyssa around midnight, and the situation had not changed. They're both still sitting there, in a hallway, waiting for a room.

I'll be heading back to the hospital tomorrow morning as soon as visiting hours begin. I really, really hope they have a room for her by then; i hope she doesn't get left in a hallway all night.

This feels like it's rambly and has a lot of unnecessary detail; sorry. It's more or less stream of consciousness, i'm just trying to get this written out while it's still fresh.

Hospital Update #1, June 13, 2023

 Amanda is in the hospital. Update below.

In the last update, I mentioned that she was doing a little better, sleeping a little less, eating a little more. That didn't last. Saturday night, she started having difficulty again, and the last two days she's mostly been asleep. Still eating a little solid food, but even less. She vomited a few more times. She hasn't been able to get comfortable.

This morning, she had her first appointment at the Cedars-Sinai research clinic, the new place where she's able to see her oncologist now that she has Medicare. They drew some blood for labs, and then she was to see three doctors, including Dr. L, and I think have an injection.

The first doctor was a nutritionist, who gave us some helpful, specific guidance on getting food into her. That went well.

After that, we waited in the room for quite a long time. She asked if I could go check how much longer it would be, and see if she could get a snack, so I went to do that. The doctor's assistant said she would go check on him, and directed me to a commissary to get snacks. I went over there, grabbed a Nutter Butter (the nutritionist said she should have crackers and peanut butter, this was the closest thing they had) and a sandwich for myself, or to share if she was up to it.

When I got back, Dr. L was in the room, fervently going over the results from the labs. Her calcium level is 14, which is considered critically high, hypercalcemic. He listed off the symptoms of hypercalcemia: fatigue, confusion, dehydration, loss of appetite, nausea, vomiting, more. Everything she's been experiencing in the last few weeks. He started a group text with her and a doctor at the Cedars-Sinai hospital, who asked her to text him as soon as we got there.

They took her over to the infusion area, gave her a bag of IV fluids plus another IV treatment, and gave her a huge shot in each butt cheek of something to bring the calcium levels down.

After an hour of IV fluids, they sent us straight to the ER. She's expected to be admitted to the hospital and will likely be here for at least 2 days.

We got to the ER just before 2. They put her in a wheelchair, checked her vitals, did an EKG, and sent us into a crowded room to wait.

We have been in the waiting room at the ER for four hours. We've been waiting so long they rechecked her vitals. They are swamped. Someone came out a little bit ago and addressed the room, explaining how ERs work and how, like, if someone gets shot, for example, they go ahead of you, so they can't offer time estimates, thanks for understanding. Then a cop came through shouting that each patient is only allowed 1 visitor and any more than that must wait outside.

On the plus side, we're at Cedars-Sinai. This is where Alyssa works. She came down on her lunch break to see us and brought me a sandwich. Unfortunately Amanda isn't allowed to eat anything right now. I'm sure we'll see her again at the end of her shift.

We left home at 8am. Zuul has been alone that whole time. I'm sure she has to go potty and is hungry. Same for Ghost and Vinz. Since Alyssa moved into the park, I usually take them out at least once a day. As soon as Amanda gets settled into a room, I'm gonna take off to go do that, and also pack her a bag for the next few days in the hospital. I'm gonna pick up Chelsea on the way, so Amanda will have another friendly face to visit tonight as well.

Dr. L and the Cedars doctor have both confirmed via text that the hospital is aware of her and that she's been here for over 4 hours, they're just waiting for a bed to put her in.

I'll post updates as I have them. Love you all.

6:51pm

My understanding of the situation is that this is common in cases where cancer, especially breast cancer, has spread to the bones. The cancer is literally pushing the calcium out of the bones so it's accumulating in the organs.

Update June 8, 2023

 It’s only been two weeks since the last update, but i am trying to do these more often, and there are a few things i wanted to get out there right away. Although i’ll still start this one with an apology, a lot of you sent me direct messages after the last update and i have not gotten to all of those yet. When i’m under this much stress, my communication skills are often the first to go.

The day after i posted the last update, Amanda started having a lot of bleeding from the nose and mouth, which was difficult to manage. The first time her mouth started bleeding, it lasted for over 3 hours before she could get it under control. She also had been sleeping 20 hours a day, and vomited once or twice a day for the next week or more. We contacted her oncologist twice to ask if what she’s going through is normal, or if i should take her to the hospital. He told us that, unfortunately, everything she’s going through is known side effects of the carbotaxol, and she’ll just have to ride it out. He suggested a few things for me to pick up over the counter, to help with the bleeding and dehydration, so i did.

She started having trouble even eating macaroni and oatmeal, so we were down to just applesauce, jello, and popsicles for a while there. Difficult to do anything with so little fuel in the body.

The vomiting finally tapered off earlier this week, and we thought she was done with that, although it did happen again today. It’s curious, even though the vomiting usually happens almost immediately after eating and taking her meds, it’s been predominantly liquid, with very little trace of the food she just ate, and her pills have not come up in any of it. So i guess that’s a plus.

We had a phone appointment with the oncologist on Tuesday. Unfortunately, she was rejected from the study which i mentioned in the last post, the super-Kisqali-type medication that we hoped she would react to well, since regular Kisqali was so good to her for so long. Apparently, at this stage of the clinical trials, they’re looking for patients who have never received chemo, so she was ineligible.

I did mention that there was a backup to the backup, though, and fortunately, they wasted no time getting that to us. It was hand-delivered to our front door the next morning, and she’s already started the new medication.

We asked him again about all the sleeping, bleeding, vomiting, and eating aversions, and he again assured us that yes, it’s normal for these side effects to persist, even this far out from treatment. We can expect this to continue for another two weeks yet.

I do have positive news though. Yesterday, she was feeling a bit stronger. She was able to eat a bowl of cereal for breakfast and a fistful of spaghetti for lunch and again for dinner, keeping it all down. She only slept 16 hours yesterday. She’s feeling more alert and cognizant.

Today, she woke up early, and she wanted to go to the gym. So we did that.

The gym is about 500 feet away from our place. We had to stop and take a break about a quarter of the way there, but she was able to walk all the way down. She planned to sit on the recumbent bike and pedal very slowly for as long as she could, but by the time we got there, her legs were exhausted. So she sat on one of the weight machines and very slowly lifted 10 pounds, five reps, fifteen sets, over the course of an hour.

Afterward, we went to Costco. She ate half a hot dog and a couple bites of pizza, and drove the motorized shopping cart around while i filled it with groceries.

We stopped at CVS and picked up some prescriptions, including yet another new medication.

That wiped her out for the day, she’s been sleeping since we got home at 1:00. But that’s an incredible improvement over just a couple days ago. So i’m gonna call this update a net positive.

Pharmacy Rant June 7, 2023

Okay i know i'm overreacting but i had a strong response to a robocall today and i'd like an objective outside opinion.

Don't feel obligated to validate my feelings or anything if you think i'm wrong about this. I'm also curious if this might be a generation gap thing if older folks will have a different viewpoint from middle aged people like me or younger people.

Amanda got a new medication delivered today from a specialty pharmacy - i'll be writing an update about that yet today or tomorrow, right now i just still have adrenaline about this so i'm using it. This is something that couldn't be filled by our regular pharmacy, but it was nice that they hand-delivered it to our door.

First of all they keep calling me instead of her, even though every time they've called we've clarified that my number should be secondary, if they need to talk to her they should be calling her number. Three times we have told them this.

The meds were delivered two hours ago. Just now i got a call from the pharmacy. I panicked. I thought everything was taken care of and we wouldn't need to hear from the pharmacy again until her supply ran out next month. My brain immediately jumped to, there's a problem with the medication. They sent the wrong thing or there was a recall over manufacturing defects or something. Or the insurance fucked up and we owe a thousand dollars. My body dumped all its adrenaline and all these thoughts sailed through my mind at high speed in just a few seconds.

I answered the phone, and it was a recording saying thank you for using our pharmacy, here is our phone number, please call again. Then it hung up before i could say anything.

Um. Several questions. Mostly, why does this exist??

AT BEST it's a mild annoyance. At worst, you're making an unnecessary call to someone who has or is caring for someone with a serious illness, who has anxiety, either preexisting or because every time a medical institution calls it's delivering bad and/or life-altering news, so that you can present them with your phone number which they already have and ask them to make another purchase from your business, which they have no control over anyway.

We live in an age where the vast majority of phone calls are made by robots to either sell us things we don't want or scam us. Read the fucking room.

So i called them back. I said, "Hi, do you take feedback?" and they were like, umm, i guess. So i told them what happened, i told them i don't find that useful and it made me panic because i thought something was wrong with the medication, please don't have it call me again. They transferred me to another person. I told that person the same thing, and he told me he can't choose which robo calls i receive, he can turn it off but it will also turn off notifications that medications are ready.

What. The Capital-F Fuck. Is wrong with your system.

I just wanted to give you feedback. Please don't disable useful notifications about the state of my medications. Just stop the unnecessary robot calls.

I get that older generations are into the idea of personal thank-you notes, whereas my generation typically finds that inane. But i would think that, no matter where your opinion falls on the spectrum of thank-you note necessity, we could all agree that a cold, sterile, unprompted robocall does not qualify as a heartfelt thought.

Fix your system.

He said he would pass my feedback on to the owner. I expect nothing will come of this.