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.