Trevor Update August 13, 2023

 I was having a full-on panic attack through the entire funeral, including while i was up front speaking. I sat through everyone's speeches, stone cold, feeling almost nothing, unable to cry, trying to perform appropriate facial expressions. I didn't recognize the physiological signs of the attack until after the ceremony was over, locked in the single-occupant bathroom, hyperventilating and taking a status report of my body, organ by organ.

The last couple days, i've realized the panic attack never ended. I've been in a hyperactive, manic state the last few weeks, overcorrecting for whatever was happening inside of me and performing someone else on the outside. Let's just say Manic Panic and get the Hot Topic jokes out of the way right now. In the beginning, grief felt like a performance. I wasn't sad, i was numb. A variation of that meme, "I am going to get a good grade in [grieving], a thing that is possible to achieve and normal to want" flashed through my mind constantly. So i just. Stopped doing that. I told people that i was okay, that i had gotten out in front of the grief through all the pain and suffering of the last few years, so now that it's over i can just feel relief. I told people that because i wanted to believe it myself. I don't want to do this anymore. I desperately want the pain to be over. But it's not. I haven't been honest with anyone, least of all myself. I was trying to speed run grief and get it over with so i could move on. And finally i ran so fast i tripped and face planted into the pavement.

I wasn't left alone for weeks after Amanda passed. And i love and appreciate and value all of you, everyone who took the time to stay with me and make sure i was safe and eating and hydrated. But i've just wanted to party with you. I'm defining partying extremely loosely here, sometimes that meant sitting on the couch and chatting, sometimes that meant GenCon, but it frequently involved drugs and alcohol.

As soon as i had an afternoon to myself, this past Friday, the overwhelming emptiness of the house started crushing me. It's so big and i'm so alone. I didn't get ahead of the grief, i just time shifted it and cut out the commercial breaks. Like a DVR.

I canceled plans yesterday, and today, and spoiler alert, i'm probably gonna do it again tomorrow. I hate this. I hate that she's gone. I hate that i'm keeping a running list of all the things i keep seeing that she would want to know about (I'm Board is opening a third location! There's a Naf Naf Grill on State Street now! There was a new version of Hex Hex at GenCon! I got interviewed for a podcast and told the story of how i proposed to you!) which i will never be able to share with her. I hate being alone. I'm not whole. There's a giant crater in my chest.

But i'm gonna have to deal with feelings sooner or later, it's inevitable, it can't just be partying forever. I said to a few of you at the wake that there would come a time when i got peopled out and i would need to push everyone away for a bit and be alone. I think i hit that point a long time ago, but i didn't acknowledge it, and i just kept pressing on. Partying. Performing a version of an okay person to make people believe i was. I just didn't want people to worry about me. I still don't. How fucking midwestern. California already taught me not to be that way anymore but then i lapsed straight back into it.

I'm not okay. I'm sorry for presenting myself like i was. I don't know what i'm doing. I'm sure a lot of you already knew this but i guess i'm just figuring out for myself what it looks like. I haven't been eating as well as i've told you and i haven't been getting out of bed when i don't have to. I am drinking water though, that's the one streak i haven't broken through all of this. I've been cherry-picking episodes of Star Trek that i know make me sad and playing Portal and rereading Jon Bois's work, which is already more emotional than it has any right to be, but now that Amanda can never read the third part of the trilogy, punches that much harder. She loved those football satellites.

I love and appreciate every one of you. But i think i need some alone time.

Amanda Sue "Wolfie" Haerterich Obituary

 Amanda "Wolfie" Haerterich
April 20, 1986 — July 19, 2023
Madison

Amanda Sue “Wolfie” Haerterich, 37, of Madison, Wisconsin and Los Angeles, California passed after a long battle with cancer on Wednesday, July 19, 2023, at 4:45pm central time, with her husband, Trevor, and dozens of family and friends by her side.  It was a breathtaking moment; a room filled with love.

Amanda is survived by her husband and life partner of 20 years, Trevor Triggs; parents Phil and Tammi Haerterich; brother David, his wife Emily and their son Jack; and sister Sarah and her daughter Eylah; brother-in-law Correy, his wife Jolene and their daughter Jadzia Triggs; her fur babies, Zuul and Seras Victoria; and soul sister since middle school, Alyssa Pomerenke (fur babies Ghost, Vinz Clortho, Poofy McFlufferbutt, and Surreal saDiablo).

Amanda was born on April 20, 1986 at St. Mary’s Hospital in Madison, WI.

Already nicknamed Wolfie, Amanda graduated from Marshall High School in 2004 where she excelled with passion in her science and animal vet classes; she also played basketball and competed in cross country and track & field.  From there, Amanda pursued her Veterinary Technician Associates Degree from Madison Area Technical College, graduating in 2006.  She worked at several Madison clinics, including VES VSC in Middleton.  In Los Angeles, she found a home as a Surgical Technician with ACCESS Specialty Animal Hospital, specializing in anesthesia.

During her years in Madison, Amanda ("Green Shorts") was recruited by the Reservoir Dolls roller derby team for her go get 'em, no flys given attitude and radiant spirit.  She skated under the number W01F, and from this the team named her Calla DeWilde.  From 2013 to 2019, Wolfie played as a blocker and made her name as a top notch jammer.  Res Dolls for life.

Amanda and her husband Trevor met in elementary school, but didn't start dating until her Senior year, on September 13, 2003.  They married on September 13, 2013, the tenth anniversary of their first date, on an island in Burke Town Hall Park, Burke, WI.  Together, they road tripped around New Zealand, took trains across 14 European countries, and explored at least 35 of the United States.  They were avid tabletop gamers, attending GenCon in Indianapolis every year; Amanda was a talented Dungeon Master for multiple gaming groups.  In the last few years, Amanda and Trevor rekindled their love for running, dragging Alyssa into it, and ran three half and three full marathons together.

A visitation service was hosted in their home in Madison on Friday, July 21, 2023.  Dressed in her Roller Derby Boutfit, wearing her Draft Night tie, with the Reservoir Dolls flag and all her racing medals hung above her, surrounded by those who loved her the most, over a hundred people whose lives she'd touched were given the chance to say goodbye.

A Celebration of Life will be hosted at Cress Funeral Home, 3325 E. Washington Avenue, Madison, on Sunday July 23, 2023 from 1pm until 4pm.  A formal time of sharing will start at 1:00 PM, with the floor open for all to share our favorite stories, smiles and laughs; and in Wolfie's spirit, to share our love.

 Amanda passed away peacefully at 4:45 pm central yesterday afternoon. She was surrounded by so much love.

Home

 Amanda and i are home.

Agrace will be here within the hour.

Last Looks at Los Angeles

 Last looks at Los Angeles.

I am having a lot of feelings.

I think i'm more attached to this city than i thought.

 

Update July 17, 2023

 The situation is changing rapidly. We're flying out of LA tonight.

I can't thank Anjee and Tim enough for making this happen.

Update July 15, 2023

 Some things have been left out, so if you know more than i've written here, please keep it to yourself for the time being.

The last update, from July 6, ended with her first gemcitabine treatment. I put in there that her bilirubin was 12.4 before treatment, which necessitated a long wait while her doctors conferred to decide whether to move forward. We were also attempting to schedule abdominocentesis for the following day.

She did get the abdominocentesis done on July 7. They drained 1.2 liters, almost 3 pounds of fluid, off of her abdomen. It was less than expected, but that's still a pretty hefty amount. She did feel a bit better afterward, but not as much as she'd hoped. They told us to come back any time that she felt like she needed it, as ascites fluid can build up very quickly, even as much as a liter a day. They did schedule another one for 8am on the 13th, to be done right before her next treatment. She was already feeling the pains in her abdomen by Monday, though, and we had considered going in for an additional draining, but she decided to wait until the scheduled time on Thursday.

Thursday the 13th rolled around, and we went in for the next gemcitabine treatment. The abdominocentesis begins with an ultrasound to locate and quantify the liquids they need to drain, but as they searched around, they couldn't find any. All the additional discomfort in her abdomen had to be coming from somewhere else, it did not appear to be ascites. They didn't drain anything.

They drew blood, as they always do before treatment. We waited. They started her on a bag of IV fluids to help alleviate her chronic dehydration.

When the bloodwork finally came back, it was not good. Her bilirubin was up to 12.5, only a slight increase from last week, but an increase nonetheless. They determined they would not be able to give her treatment.

It was explained to us at this time that the gemcitabine is not supposed to be given if the bilirubin is over 12. The discussion last week had resulted in them giving it to her at 12.4 anyway, with the expectation that it gemcitabine would make the bilirubin value come down, and with the understanding that if it did not, the treatment has failed and could not be continued.

This is where we're at. Gemcitabine, the Hail Mary, the last available treatment, has failed and cannot be continued.

There are no other treatments available to her.

I'm not going to lie. We've been given the potential timeline and it is very short.

I know. I know everyone wants to keep fighting, most of all her. People have sent us dozens of holistic cancer treatments, and we've tried most of them. People have asked us about other medical procedures and drugs that they want to know if we've tried. Yes, we've talked about ursodial to bring the bilirubin down. No, she's not eligible for a liver transplant. Turkey tail mushrooms were our first resort. Manuka honey. Castor oil. We spoke to a cutting-edge specialist about Y90. Thank you all for your suggestions, but nothing is working. You can't just google "how to cure cancer" and expect it to work. And yes, of course, we live in California and we've been dealing with this for three years, yes, we have absolutely tried cannabis. I'm sorry if i'm coming off as rude here, but we're fielding these messages every single day and we're just so tired. I know you want to help. I wish it was possible. I would pull the cancer from her body with my bare hands and eat it if i thought it would do anything, anything at all. I know.

Her bloodwork also revealed that her ammonia level is significantly elevated now, so that's become a concern. It makes sense. If you search for hyperammonemia, you can find a list of symptoms, and she has all of them to some degree. Confusion. Ataxia. Abdominal pain. We've been given some medication to help get her ammonia down, but the main side effect is severe diarrhea, and since we're already struggling with dehydration...well, that's a fine line to walk.

Dr. RT showed us some of her recent imaging. Her liver is enormous and is pushing all of her other organs out of the way. Something like 25% of her body mass is cancer now. There's just too much going on in there.

She was also anemic, so they sent her to the hospital for a blood transfusion. I asked if they could send us to the Cedars in Tarzana, but they insisted on Beverly Hills, in case she was admitted, so Drs. L, RT, and R would be able to check in on her. They said to head straight there from the clinic, and Dr. R would expedite her straight through so we wouldn't have to wait. I told them that they'd said the same thing last time, and we ended up in the waiting room for 6 1/2 hours. They assured me they'd do everything they could to avoid that happening again.

It still ended up being a 3 1/2 hour wait for a room. After that it was still several hours before they got the transfusion started.

She did not end up getting hospitalized this time. They sent us home around 1:30 am.

And unfortunately, Amanda's phone got left tangled in the sheets of the hospital bed.

As if we don't have enough problems right now.

I'm still working on tracking it down. I may write a whole update about just that debacle later. Still hoping for a good resolution. But aside from the absolute nightmare of losing a phone at all, the cloud wasn't configured, and nothing has been backed up from the phone since the beginning of May.

We're incredibly grateful to Nat for having been here through this. I know it's not what any of us expected her visit to LA to look like, but i can't overstate how good it was for us to have her present as times have gotten harder and harder.

So that's it. We've got a few more appointments and some loose ends to tie up here in LA, a little packing, and we'll be heading back to Wisconsin to spend as much time with friends & family as possible. Our departure date is still up in the air, but it will be this week.

When we get back, we'll be enrolling her in hospice care. We've already discussed this at length with Dr. RT, and she'll be helping to coordinate efforts with the Wisconsin team to ensure Amanda gets the palliative care she needs.

One of the last things Dr. RT said to us at the appointment was how devastated Dr. L was about the way things have turned out. He had gotten personally invested in her case. He liked us. He really thought he could get her through this. He has been very affected by everything that's happened. Dr. RT said oncologists just do not get that way about their patients, this was a rare thing.

I know a lot of you want to help out. There are things that need to be done. The easiest and most important is, of course, money. I've always said i hate plugging the GoFundMe but at this point it's such a necessity to get us home and to get her care, as the MediCal will not transfer to Wisconsin and Medicare leaves us with huge copays that i don't know how we're going to handle. We're looking into BadgerCare and other options, but it's certainly not going to be as financially helpful as MediCal has been. We're also looking for some furniture, namely a few couches and beds, so if anyone has an old one they were planning to get rid of that's still in useable condition, please let me know and i can have someone pick it up.

There will be more things. I've always tried to ask as little as possible of all of you, but i think the time has come where i just can't do things on my own anymore. I'm about to ask a lot of you. Some of you i've already asked a lot of, and i'm humbled by how quickly everyone's sprang into action. We have an incredible support network, and we're really looking forward to being able to see you all in person again.

Love you all. I'll keep in touch.

Update July 6, 2023

Hey friends. We have, as usual, bad news to report. We've been keeping this one pretty close to the chest for a week and a half now and have only told a small handful of people. We needed some time to think and make decisions.

Last week Tuesday, June 27, we went in for a routine meeting with her oncologist, Dr. L (these posts are public on Blogger now so some names are redacted). As usual, they drew blood ahead of the appointment, to see how things are progressing. Since the calcium level is what sent her to the hospital at the previous appointment, we assumed that would be the main thing they'd be looking at. Calcium was 10.1, which was above their target number from the hospital, but still below the 10.3 reference range, so they didn't seem concerned yet, just keeping an eye on it.

I don't remember if i mentioned the bilirubin in any of the previous updates. At the time that they sent her to the hospital for calcium, the 13th, i had noticed on the screen that bilirubin was elevated, but no one said anything about it, so it didn't seem like it was a concern. They were very focused on that "critical" calcium level, so all else got pushed to the side. I want to say the number i saw on the screen was something like 3.9, but i didn't get a good look and i didn't know what it meant anyway. Just "elevated."

The bilirubin was 7.9 on the 27th. Her eyes and skin were starting to become noticeably yellow-tinted. Dr. L was very concerned about it, and went back to find the CT scan they did in the hospital which nobody ever talked to us about. Between the blood report and the scan, what was determined is that she has multiple blockages of the biliary tree, at the tiniest little branches. Put simply, bile leaves the liver through a series of veins that look very much like a tree. Usually, when there's a liver blockage, it occurs at the "trunk" of the tree, and they can go in surgically and install a stint, which gets fluids moving properly again. Where Amanda's blockages are, it is physically too small for them to do that. There is nothing modern medicine can do to clear these blockages.

We found out a few days later that normal reference range for bilirubin is 0.1 - 1.2.

As far as continuing cancer treatment goes, this severely limits our options. Almost all modern cancer treatments are processed through the liver, and hers is now functioning well below the limits of what a liver can handle from any given cancer treatment. No current study at Cedars-Sinai or UCLA will accept a patient with a liver in this condition. Dr. L name-dropped two potential treatments he was researching that might still work, but he still needed some time to see if they were compatible with her case. He said he'd call back by Friday. In the meantime, continue the capecitabine (the new drug she started the week before the hospital); it's not being as effective as it should, due to the liver issues, but it is doing something, which is better than nothing.

It's disheartening. Frankly, every meeting we've had with Dr. L since he became her oncologist about a year ago, he's come in with such energy and confidence, explaining everything that the latest scans and lab reports contained, showing us the images and pointing out problem spots and explaining exactly what we were looking at, and telling us, we can still beat this. Here's our plan. Here's our backup plan. Here's our backup to the backup plan.

So when he came in the room that day, and all he said at first was, "I'm worried," well. It was jarring. To say the least.

We saw another specialist that day but honestly i've forgotten who they were or what they were telling us.

After that specialist, we saw Dr. RT, a new member of the care team. We were supposed to see her on the 27th, but we went to the hospital, so that part of the visit got skipped. Dr. RT will be managing Amanda's prescriptions, helping her find resources for continuing the fight, and will be more of the "bedside manner" doctor, since Dr. L is more of an engineer and focuses on the technical, nuts-and-bolts side of cancer care. She also, among other things, told us to watch out for ascites, fluid filling the abdomen, which was becoming a possibility due to all the liver stuff. We were with her for over an hour. She gave us a lot to think about and look into.

Dr. L called us the very next day. He offered one option for further treatment, gemcitabine. It's more chemo. It's another infusion that she'll need to have done in the office.

He described it as "the Hail Mary." This is it. This is the last possible treatment they can offer her. If it doesn't work, there are no more alternatives. The odds are not good. He gave it about a 10-20% chance of success, and a strong possibility that if it doesn't work, it could make things worse. He didn't elaborate. We didn't ask him to. I don't know what "make it worse" could possibly even look like, and i'd rather not know. He offered her the choice, to take a chance on this drug, or to not do that, and maybe it's time to go back to Wisconsin to be with family.

She chose the treatment.

Tammi was still in town, so they spent a lot of time together at her hotel these last few weeks. Meanwhile, i've been very busy cleaning up the RV, doing repairs, and handling other tasks that we've been putting off for a year or more at this point. I want her to have a clean, accessible environment to heal in, and our RV has not been that in quite a while. Plus, the ulterior motive: getting the thing potentially ready to move. I haven't so much as started the engine in four years. I don't know if it even can move. I'll probably need someone to come inspect it.

If you kept up with all of the hospital updates, you may remember that the main contingency of her getting discharged was to get the vomiting under control. That night, Wednesday the 28th, she threw up again, just as she was about to head over to the hotel with her mom. She did okay for the next few days. But over the weekend, she started vomiting again. She was starting to feel like she did before going to the hospital. We were worried her calcium might be getting high again. Sunday, she got a hold of Dr. L, and he prescribed her a bunch of new antinauseals, with instructions to try one at a time to see if any help.

Meanwhile, on Liz's recommendation, i reached out to Dr. Nutting in Denver, Colorado, a pioneer of a new liver cancer therapy called Y90 radioembolization, which Liz said had been very helpful to her in her own cancer journey, which started in a similar way to Amanda's. We figured, if the liver damage is the reason we can't get any cancer treatments, maybe this will repair it enough that we can? Maybe Dr. L just didn't know about this one, it's pretty new. I gave Dr. Nutting a brief overview of her case, and asked if he could help. He emailed me back early Monday morning, saying he'd like to help if he could, and asking for any reports and imaging on her liver that he could get. He would like to have a phone conversation with us Wednesday.

Monday morning, Amanda was not any better. She called Dr. L's office to see if she could, at a minimum, come in and get labs drawn, to check that calcium level. The lab was booked solid all day. They recommended she go to the ER. She wouldn't have to go to the Beverly Hills, though; the Tarzana Cedars-Sinai would be fine. It's a smaller hospital, but it's much closer to us in the valley. We were hoping that the wait time wouldn't be as bad in Tarzana as Beverly Hills, because remember that nightmare?

Her mom took her in. It was July 3rd, and Tammi was adamant that if she was going to go to the hospital anyway, we'd better get her there before the holiday. I would have gone with, but there was a miscommunication between me and Alyssa and i missed the boat. If they admitted her to the hospital, though, Alyssa would have come back for me and we'd have all gone in.

She was in an ED room within an hour. Half hour after that, they'd already drawn blood, done an X-ray, she'd seen the doctor, and nausea meds were ordered.

Blood work was good. Calcium was actually only a 9. They determined the main problem was dehydration. They gave her a bag of fluids, and let her go home, with orders to drink more water. The bag of fluids revived her, and she was feeling better the next few days.

The calcium was good, everything else looked fine enough to send her home, but the bilirubin was 11.6, a jump of 3.7, or almost 50%, in six days.

Wednesday morning, we were able to get Dr. L's office to send over 100 pages of reports to Dr. Nutting. We spoke with him that afternoon. He had only skimmed over a bit of it by the time we talked. He went through a number of things with us regarding the state of her liver and potential treatment, but in the end, the bottom line was, he could not help. We got our hopes up for nothing. The damage to her liver is already too extensive. Any version of the Y90 radioembolism would likely make things worse. He recommended we look into Ursodiol, a drug which thins the bile and may allow it to pass through the blockages. He urged us to keep his number though; if, through other means, we can get those bilirubin levels down to an acceptable level, he'd be willing to do the treatment.

The cutoff for Y90 is 2.

We have a long, long way to go.

As we got off the phone with him, Amanda mused that we should've called him sooner. But like. When? It was already too late by the time we knew this was a problem. The earliest bilirubin level we're positive of having known was already 7.9, the first one i think i remember was 3.9. That's still either double or quadruple the acceptable limit. This was never going to work unless we could have predicted the future.

Tammi flew home this morning.

Amanda had her first dose of gemcitabine this afternoon.

As always, they ran bloodwork first thing when we arrived. They also weighed her; she's lost another 4 pounds since last week, which puts her down almost 40 in the last two months. Then they kept us waiting for over 2 hours. At first no one could tell us what was happening. Dr. T came to visit us and we had a lengthy conversation with her about painkillers. They may need to take her off of hydrocodone-acetaminophen (vicodin), the only painkiller that's worked for her and not had adverse affects this last year or so. With her liver function continuing to spiral, Dr. T is concerned we will begin seeing more and more adverse side effects from the hydro. She wants to move Amanda to oxycodone...which has, historically, made Amanda vomit. Dr. T also said she doesn't think Ursodiol will work for Amanda's case, but she's going to discuss it with Dr. L.

The nurse finally came in to let us know what was going on. The bloodwork values were all higher than expected. Bilirubin was up to 12.4 today. They had to get a hold of Dr. L, who was not in the clinic, to approve moving forward with treatment. Fortunately, he gave the green light. I don't even know what we would do at this point if her blood was so far out of spec that she couldn't get gemcitobine.

We got home around 4:30, in time for her 5:00 appointment with the in-home nurse; after the delays at treatment, we'd been getting concerned about making that. As soon as we were home, Amanda started complaining about pain in her abdomen. We were becoming more concerned that ascites fluid might be filling her abdomen, as Dr. T had warned. She called Dr. L's office to try and schedule an abdominocentesis tomorrow morning, which would involve them sticking a needle in her belly and draining the fluid. It was already after hours, so they asked her to text Dr. L directly. We haven't heard back yet.

So that's the update. It's very bad. When we were in the hospital, we'd been given the impression that the calcium was the reason she was feeling the way she was, and if we just got that cleared up, she'd go back to normal. Or at least, as normal as she's been in the last few months. That has not happened. Things have only gotten worse.

So this is it. The "Hail Mary." The last option. We haven't talked about it in depth yet, we haven't looked at logistics or timetables or anything like that, but. If this fails. If gemcitabine doesn't work. We are probably going to move back to Wisconsin. At least temporarily. If we go back, have time to be close to our friends and family, maybe the love and support of those we miss the most will be enough to heal her. We'll still pursue palliative and maintenance care, and maybe something will even work.

And WHEN it does, when she's feeling stronger, maybe we'll move back to LA. It doesn't have to be goodbye forever. She just needs to be somewhere right now where she can be surrounded by love.

It's still up in the air. But that is where we're at.

Love you all.

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.

Update May 27, 2023

I’m just gonna come right out and say it. Chemo has been 100% ineffective and has, once again, done absolutely nothing to help her. This week’s scan showed that not only has the spread not been stopped, it is still growing.

Meanwhile, the chemo has absolutely wrecked her. When she restarted chemo on April 10th, she still had hopes that she’d be able to run the OC Marathon a month later. Her physical condition started deteriorating immediately. Training, even short distances, was getting difficult. It was becoming doubtful she’d complete the race. On April 29th, one week before the race, we attempted to run the full distance near home, so that if she wasn’t feeling up to the actual marathon, she would be able to submit this GPS-tracked workout as a virtual race and still get her medal. That day, she made it 9 miles, and most of that was walking. By the end her hands and feet were somehow both numb and hot. She stopped training after that.

As i’m sure you’ve all seen by now, i was able to push her in a wheelchair through the entire marathon, and she still got her medal. It was a good experience for both of us and i’m so happy we did it.

She hasn’t had good days since then. The last few weeks, she’s barely left the bed. We’re to the point now where she will get up to go to the bathroom, which is literally three steps from the bed, and by the time she gets back to the bed she’s breathing heavily and completely exhausted. She can barely eat, managing maybe a 4oz cup of Jello or apple sauce most of the time, maybe small bowl of macaroni at best.

She’s also developed a lot of food aversions. She’ll ask me to bring her a specific food, and when i get it to her she’ll take one bite or even no bites and tell me she can’t eat it, it looks revolting. She was having a lot of oatmeal, but now she says oatmeal is too dry. She’s also been vomiting a lot. She can’t take some of her meds, including her pain meds, without food in her system, so this has been a struggle. We’re gonna try instant mashed potatoes today, she had a sudden craving for them so i picked some up. Hopefully this goes well.

Her skin is dry. Her mouth is dry. No matter how much water she drinks, she always seems to be dehydrated.

Additionally, she’s been in constant pain. Some days i sit in bed with her for hours, just rubbing her back, in an effort to keep it manageable. She has woken up at odd hours almost every night in the last two weeks either vomiting or in so much pain that she can’t find any position that doesn’t hurt. She has to keep pushing Zuul and Seras away, because most contact she has with them hurts her, and i think it’s very upsetting to them. Zuul and Seras have both been exceptionally clingy lately, i think both because they’re very concerned about their mom, and because in the last three months they’ve each lost their respective companions, Copper and D, so they are now an only dog and an only cat for the first time in their respective lives. They’ve also been clashing with each other a lot lately, which doesn’t help us at all.

I’m so afraid to leave her alone. I know there’s not a lot i can do for her, i can’t take the pain away and i can’t heal her broken body, but i can provide small comforts and temporary relief. I haven’t even wanted to leave her long enough to do my own morning workout. I’ve gotten her down to the gym a couple times, where she’s sat on the recumbent bike for half an hour while i run on the treadmill, but she goes so slow on the bike and it still wipes her out entirely for the next 36 hours. We haven’t even tried that at all in the last 10 days. Her legs have gotten so skinny, the muscle is being eaten away so quickly. She’s lost years of conditioning in the last six weeks. She’s also lost over 20 pounds since restarting chemo.

Meanwhile, her liver, which is now home to over 50 lesions, has enlarged to the point where you can see it poking out of her belly like it was hiding under a blanket. If you touch it, it feels hard. It’s just as uncomfortable as you’d imagine.

Since it’s useless, she’s been taken off of chemo effective immediately. Unfortunately, the scan was based on just the first two doses. She had the scan on Monday…and then was given a third dose on Tuesday, which we now know was unnecessary and is only going to contribute to her having a couple more shitty weeks. At least they didn’t give her the Zarxio this time, the white blood cell stimulator, since that fucks her up more than chemo in the short term. Her oncologist had told us the last time we saw him in person, April 27th, that the chemo drug he had her on this time, Carbotaxol, is like “hitting it with the hydrogen bomb,” and “if this doesn’t work, then we’ll start to get worried.” Those words have been ringing in our ears all month.

Fortunately, when he called yesterday, he wasn’t just bringing the bad news. He already had a backup plan ready to go, as well as a backup plan to that backup plan. We already knew that after chemo, the plan was to apply for more clinical trials; it was just a question of finding the right one for her case. He came up with one that’s for a new drug which is essentially a more powerful version of Kisquali, which is what she was on before that successfully kept her cancer in check for over a year, until suddenly it didn’t. She was taken off of Kisquali because the cancer was exhibiting heterogeneity, but further scans haven’t really expanded on that. We’ve long suspected that part or all of the reason the spread happened in the first place was because they asked her to skip a week of Kisquali because some of her bloodwork values were out of spec; maybe if she hadn’t skipped that week, this wouldn’t have happened. But we will never know. All this is to say, we feel that putting her on super-Kisquali might be a very good move for her right now. This drug has just come available in the last two weeks. And if she doesn’t get into the study or if this drug doesn’t work for her, the doctor already has another option ready.

If she gets into the trial, we’re expecting the new medication to be shipped directly to our door within a week. So that’s at least some shred of hope. Also, her Medicare starts next month, so she’ll be able to see a wider network of specialists. Her oncologist already has an appointment set up for her at Cedars Sinai just a few days after Medicare kicks in, and he’s wanted to send her to an expensive specialist at UCLA for a while, which will now be possible.

You know i hate to say it, but i always have to. If you want to help out, our GoFundMe is still active. Meanwhile, i’ve been working on a documentary about running a marathon with cancer, i’m hoping to have that finished soon. The video i made about her second first day of chemo last month got over 1600 views, which isn’t a lot for a YouTuber but is a lot for me, so i’d like to do more of those. I had a few edits about the subsequent week, but Amanda didn’t like them and i haven’t figured out how to fix it yet. What i’m getting at is, i’m going to be starting either a Patreon or a Ko-Fi, so that i can focus on those kind of projects and work from home, thus being here to take care of her while also bringing in some money. Besides the documentary, i’d like to start working on a series chronicling her entire cancer experience, from moving to LA and finding the lump, through the pandemic, to where we’re at today and through to the end of the journey, until a point in the future when i can release an episode titled “Remission.”

That’s it for now. Love you all.

Update April 28, 2023

 As i pointed out at the top of the last post, i only seem to write updates when the news is bad. We had a bright spot this week, so i really wanted to break the trend and share something positive for a change, even if it is just a small victory.

One thing i left out of the last post is that Amanda's been having some pretty bad headaches lately. The other day she said she thinks she's going on two weeks with this low-grade headache that just will not go away. Sometimes it's better, sometimes it's worse, and due to all the other medications she's on, pretty much her only options for headache are tylenol (which doesn't do much) or hydrocodone (which does way too much). Or marijuana, but that's not really an all-the-time solution.

The longevity of the headaches had us and her oncologist concerned, so he ordered an MRI of the brain, just to check if there was any metastasis to the brain. I took her in to have that done on Wednesday the 12th.

Last Wednesday, the 26th, two weeks after the MRI, the office called her to ask if she had received the authorization to get the MRI. We were confused, wasn't that the one that she just had done? She was scheduled to see the oncologist the next day, and we thought we'd be getting those results at that appointment. It had been two weeks and we hadn't heard anything. They said they'd put in a request for the report.

Yesterday, we went into that appointment feeling apprehensive. The headaches had not subsided and we hadn't had good news on this case in quite some time.

The MRI results were all clear. No metastasis to the brain.

The relief we felt hearing that news prompted me to want to share immediately. Holy shit. This is great news. We did have other errands to run after the appointment yesterday though, so i didn't get around to it.

There's more, though. Another thing that's been stressing us out lately is the health insurance situation. I believe i've mentioned this in previous updates. The oncologist really wants her to get better insurance, since we're on MediCal HMO. It's great for us financially, but getting appointments through it is often a long process as there are a limited number of facilities that accept MediCal and they're all overworked and understaffed. Many of the specialists he wants to send her to are not covered by the plan. He's been pushing for her to get on a PPO plan, but that's been a struggle because if you decline MediCal (California's Medicaid program), you become ineligible for health insurance subsidies and discounts through the ACA marketplace. Money's been extremely tight as it is, we cannot afford to pay full price for any of these plans, especially without an employer contribution (a hazard of freelancing). Then, we received notice that as of June, she's being put on Medicare. This opened a whole other can of worms. Medicare plans, financially, look much worse than MediCal plans (20% coinsurance with no MOOP??? Cancer care will wipe us out). And if she refuses Medicare now, but needs it later in life, they will penalize her. Not with a one-time fee or fine, but with increased premiums, for life, based on how many months she refused Medicare. So from now until age 65 is, uh, 336 months. It's a confusing situation that we need to look into more and have been...well, avoiding.

When she mentioned that she was being put on Medicare, the oncologist congratulated her and gave her a high five.

Turns out Medicare will give her access to the specialists he wants to send her to, if we set it up correctly. Also, Medicare can be set up to work in tandem with MediCal. But we have to do it carefully; if we set things up wrong, it might not work right and we could be on the hook for ridiculous medical bills and possibly monthly premiums.

US healthcare is stupid. I saw a band last week, the singer is from Sweden, and between songs he shared anecdotes about how much better their healthcare system is. He had his torn ACL reconstructed for $20. Physical therapy cost him $20 per session, until he had paid $100, then they said, "that's enough." This guy is in his mid 50s and he's dancing around on stage like he's 19. I think the knee surgery worked.

Anyway.

The oncologist gave us a business card for a consultant who specializes in maximizing Medicare signups and has specific knowledge of collating it with MediCal. I'm gonna go ahead and tag Sassbot here because i know she specifically will be very happy to hear this. We'll give them a call next week and hopefully get all of this settled.

Things are of course still not perfect, there's still the headaches, chemo is taking a lot out of her, and more, but there was a bright spot this week and i just really wanted to share.

Update April 11, 2023

 

I don't even know what has happened in the last four months. Time is a smear of incoherently blurred paint across a calendar written in the dead language of the moa. I have no idea what's happening anymore. Ever since we got the diagnosis that the cancer had spread to her liver in December, we've been kind of adrift.

 

So, in that last update, we had discovered four grape-sized lesions in her liver and five new infected lymph nodes. Before that, it had been constrained to the bones, the "best worst case" for Stage IV metastatic cancer, because it grows very slowly in the bones and we should have had time to combat it. Now that it was in the soft tissues and organs, the possibility of it rapidly spreading from there was wildly increased. We also learned that the cancer had become heterogeneous; it had mutated into a different kind of cancer than she started with. 

 

There was a lot of concern over the timeline of testing from there; we were looking at 6 weeks for biopsy results and determining a course of action sometime after that.

 

The good news is that she got in for that biopsy within days of the new diagnosis, and results came in much sooner than 6 weeks. She was taken off of Kisquali, the treatment she'd been on for the last year which was now no longer effective, and after a brief wash-out period to get all the Kisquali out of her system, was able to enroll in a clinical trial for a new drug. The alternative, the current standard-of-care, would have been to send her through chemo again, and she absolutely, positively, did not want to do that. Chemo was hard enough on her the first time.

 

The clinical trial, which we actually do not know the name of, was very promising. It's specifically designed to target Amanda's exact type of cancer, in her precise HER-2 range, and Stage 1 (the first round of human trials after successful animal testing) of testing had shown an incredible response rate. It was now in testing Stage 2 (testing dose ranges to find out what dose gets the best results), and Amanda was an ideal candidate (Stage 3 would have been testing it against standard-of-care [chemo], to see if it's an improvement over current methods; drugs in Stage 3 are very close to FDA approval). She went through a number of tests, was approved for the study, and had her first infusion on February 22. This was followed by a lot of follow-up testing; to me it felt like i was taking her in to get a scan or a blood draw almost every day. This is one thing she really appreciates about the study; lots and lots of monitoring. If there had been more monitoring during her first year with cancer, things probably would not have gotten so out of hand. Things seemed like they were going well, and she had her second infusion on March 15.

 

I have to be really honest here. I hadn't worked a paying job since October. I've been doing some work at home on my own projects, but that's all potential future income, nothing at the moment. Since the liver diagnosis, i've frankly been too scared to leave her. Working in the film industry is 12-16 hour days, usually 5 days a week, plus often up to an hour on either side for commute. She's had a lot of days where she feels weak and shitty, and she needs a lot more help with basic every day tasks than she ever used to. It was bad enough in 2020 when she was going through chemo when i'd go off to work all day and come home to find that she'd been stuck in bed all day, too sick to move, and only ate cold bread. I can't do that again. I can't stand to see her like that. I don't want her to feel like that and be left there alone. And especially after she got the liver diagnosis in December when i was 2000 miles away in Wisconsin, i just cannot bear for us to be apart when she gets that kind of news. She was so isolated, alone, in that room with the doctor when she got the liver diagnosis. I can't have that happen to her again.

 

So money's been getting very tight. We're fortunate that, since she's now legally disabled, she's been drawing a check from social security every month, but that doesn't stretch much beyond our rent. I've been better about documenting her cancer journey lately, i wish so bad that i had been doing that right from the start, with the intent of creating a series of YouTube videos about everything that's happened to her, to us, in the last three years. Going through cancer during a pandemic, while the whole world (particularly the healthcare system) falls apart around us. The hope is that we could start a Patreon to go with it, and then i could essentially work from home, and work with her, on creating this thing, and hopefully it would sustain us. I have most of an assembly cut together of the first video, which, um, frankly, is going to be a feature-length documentary (90-100 minutes), but then we, uh. Kind of. Ran out of money. I should have been working on this YouTube stuff months ago, if not years.

 

So i took a job this week. Pretty big-name music video; i can't talk about it, you have definitely heard of at least 2 of the 3 artists involved, but i am very excited. Will definitely share when it's released. I was on that all week. It was, as i said above, 12-16 hour days, so i wasn't home much this week.

 

Amanda went in for her third infusion on Wednesday, April 5. Since i was working and unable to drive her there, and since the clinic is in vaguely the same direction and her appointment at roughly the same time, she was able to get Alyssa to drop her off on her way to work.

 

Since the second infusion, she'd had an FDG PET scan and a chest-to-abdomen CT scan which we had not seen results from yet. Her oncologist would be going over those with her on that Wednesday.

 

We had expected the results of the scans to be less than stellar. After the wash-out period, there would probably be some growth, and also the beginning of new treatment usually sees some growth (kind of out of spite at being hit by new medications) before things start to get better. The study allowed for up to a 30% growth rate to be within their acceptable parameters.

 

Amanda's existing liver lesions have grown by 40 to 50%, and new ones have appeared. On top of that, there are now nodules in the lungs, more bones than they are even bothering to report, and many, many more lymph nodes. The odds are high that it's present in even more organs, just too small to pick up on a scan at this time.

 

Amanda has been released from the study, because the drug has not been effective at treating her cancer.

 

The next course of action is another round of chemo. Her oncologist is hoping that chemo will give her sort of a "reset," hopefully drive back the growth that's occurred since ending Kisquali, and give us some time to figure out what the next course of action is. Chemo is not a long-term solution; he's hoping she'll only need 2 rounds of chemo, 3 weeks apart, but if she needs more, the maximum they will give her is 6 months of chemo. So in that timeframe, the oncologist will need to figure out what the long-term solution is. It's probably going to be another clinical trial. Another study drug. Or possibly some combination of available treatments. We do not know yet.

 

She received all of this information isolated and alone in a sterile clinic room, without her support people at her side. This is my nightmare. This is exactly what i was worried about.

 

Fortunately, Alyssa had started to feel ill by the time she actually got to work. She went in, told her coworkers she wasn't feeling well, then walked over to the receptionists who take the calls and told them to their faces that she was calling out. She then headed back to the clinic to sit with Amanda, presuming that she would be hanging out during the infusion. When she texted to give her the good news, Amanda simply replied, "I did not receive treatment today," which concerned Alyssa greatly. She was waiting outside the clinic when Alyssa arrived. They headed straight to Costco to buy soup and chocolate and pie.

 

I had told Amanda ahead of time that, no matter what the news was, i wouldn't be able to talk to her while i was on set. I know she panics, i know she needs someone to talk to when she gets bad news, and as much as i want to be that person, i very much want that, i'm not able to do that while i'm at work. We had talked about her getting someone on deck as emotional support for the day if needed, and i don't know if she ever reached out to anyone, so it's very good that Alyssa was able to be there for her.

 

She was at Alyssa's when i got done working. I drove straight there. When i walked in, they were sitting on the couch, being very nonchalant about everything. She asked me about my day before saying anything about hers. This led me to assume the news had been good, or at least neutral; i was lulled into a false sense of comfort for a second. Then i asked about the appointment. She asked how much i wanted to know. I think she thought when i said "don't tell me when i'm at work," she thought i meant "don't tell me until the job is done," and i didn't. I asked her to tell me everything.

 

It hit me like enough bricks to build a church. I was more or less in shock as she gave me all the details.

The next day at work, i spent most of my time driving around buying props, which afforded me a good deal of alone time to cry in the car as i bumbled around Valencia, a city i know very little about. Basically, before this job, my only reference to Valencia is that's where Amanda's reconstructive surgeon is based, we go to his office about once every six months and that's it. I drove past it many times that day. Crying.

 

They wanted to make her wait two weeks to schedule chemo, but, as the theme of her entire cancer journey has been "arguing with doctors until they do their jobs," she was able to fight them into giving her an appointment the following Monday, April 10.

 

So she had her second first day of chemo yesterday, one week shy of 3 years after she began it the first time. It went well. She was still feeling good the rest of the day. We ran errands. We went to Alyssa's and she finished the puzzle she started a couple days ago while i drank mimosas and wrote this update.

 

I don't know what's going to happen from here. I've been hitting the Monster of Mud Lake planning a lot harder the last few weeks and hopefully can obtain some funding for that soon, but until then, i probably need to pick up more work, which means more time away from her. I'm going to gently float the GoFundMe out here again, if anyone's so inclined, but as usual i feel really awkward about it. If everyone could kind of let me know how they feel about a Patreon, though, if it seems like it was sustainable, i'd get focused on update videos going forward and documentary videos about what's already happened. At least with Patreon, i'd feel like we were giving yall something back for your support.

 

These new developments do have us more scared than ever. But she's still not ready to give up. She's still planning to run the Orange County Marathon next month, she does not want to let cancer take that away from her. She's still fighting. There are still options out there and we're not going to give up.

Thanks everybody for all of your support over the last few years. It's been rough, but just knowing you're all there for us has kept us going. Things are going to get worse and we're going to need you more than ever. We love you all.