Update December 13, 2022 - Updates and Comments

Dec 13
UPDATE 3:50 pm pdt

Things have gotten worse since i posted the update this morning.

 

I just got off the phone with Amanda and she is freaking out. I'm furious.

 

They weren't getting her biopsy scheduled, so she called the airline and had her flight moved to Friday. But then, they finally got back to her, and told her that, after all the waiting we've already done, once their scheduling person actually gets a hold of her case, it's going to take another 2-3 DAYS for them to review it to determine IF she's EVEN ELIGIBLE FOR THE BIOPSY. And after that, the earliest appointment they can book for her is THE MIDDLE OF JANUARY.

 

I'm going to refer again to what was said in the update above. These liver lesions appeared within the last two months. What can happen in another six weeks? And when i said that the first time, it was because we would have to wait six weeks after the biopsy for results. Now, that's six weeks of waiting to even get the damned thing, plus six weeks of waiting for results, so that's March. That's fucking March. That's fucking March before we can get answers to what we're even up against and what treatment plan can even be recommended. Fucking March.

 

She talked to Dr. L and he is again insisting that we need to change our insurance. He says this is because of our HMO, and that all HMOs will be the same. I don't know enough about insurance (anymore) to know if that's true, but he wants us to get on a PPO plan. He insists that a PPO plan would have had this done already. He wants us to look into Blue Cross Blue Shield. He's stressing again that the treatments he's going to recommend are going to be hundreds of thousands of dollars. We need to get on a high premium, low out of pocket plan.

 

This stupid fucking country and its stupid fucking healthcare system.

 

She got on a waiting list for earlier appointments in case there's a cancelation. She can't, or at least shouldn't, come back to Wisconsin while she's on that list. If the opportunity comes up she needs to be there to take it.

 

I'm gonna spend the rest of the night looking into PPO plans. It's possible we can get on one that will start at the beginning of the year, and then we would be able to schedule this thing with the new insurance within a couple days. But that's still looking at 2-3 weeks to wait, which isn't much better.

I might abandon the house and drive back to California until we get this taken care of. She needs me and i don't think i can handle being here right now.

 

4:35 pm pdt

um. okay. so update to the update. they just called her again. she's been approved, and there was a cancelation tomorrow morning that she can take.

 

the last hour has been the most absurd rollercoaster.

 

i cannot overstate the sense of relief i'm feeling right now. i feel like my lungs are gonna pop.

 

5:35 pm pdt

Dan i wasn't replying because a friend picked me up and we went to get some food & drinks. But yeah, that was a good guess too.

 

New update though, looks like the biopsy will be done tomorrow and she can still make that Friday flight. So i guess i'm staying put for the time being.

 

 

Dec 14 

7:58 am pdt

she's at the office getting prepped. biopsy in1 hour (9 pdt/11 cst). she will be sedated. Alyssa is with her.

 

11:05 am pdt 

biopsy is finished. she's sleeping off the sedatives now. they're gonna keep her for observation for 90 minutes and then release her to Alyssa.

 

1:08 pm pdt

Amanda is awake and cognizant and has been released to Alyssa's capable care. She said, "they made me get out of my comfortable cocoon of warmth and drugs." i told her, "you can make another comfortable cocoon of warmth and drugs at Alyssa's house," so we'll see how she does with that. She's gonna video call me when she gets settled.

 

 

Update December 13, 2022 - Part II

 

Since the house was taking so long, Amanda needed to fly back to LA for her next regular (FDG) PET scan on December 5, leaving me alone in the house with D and the dogs. The hope was that i would be able to finish the house on my own and then drive back to LA mid-December. However, since airline pricing is so unpredictable and weird, it actually was cheaper for us to book her a round trip flight than a one-way. She had appointments with Dr. L on Thursday Dec 8, and Dr. C on Tuesday Dec 13, so she picked a return flight the night of the 13th to be back in Madison on the 14th. If i did finish the house and drive back before then, she would simply not get on that plane, and we would still have saved money. Otherwise, she could come back to help me and we could make the drive together.

 

The day after the scan, she got a call from Dr. C's office that they had to reschedule her appointment all the way to mid-January, because Dr. C is taking a vacation. Amanda's natural response was to see if she could reschedule her flight to the day of or after her other appointment, but unfortunately it would have been very expensive, so we decided to leave her in LA until the original flight.

 

Thursday came. Amanda does not like going to appointments by herself, but unfortunately, Alyssa was not able to go with her, due to being asleep ahead of her 2nd shift at work. Amanda elected to put me on speakerphone, so i could at least listen in and try to take some notes.

 

The purpose of the scan was to see how well the cancer had reacted to the radiation, so the expectation here is that we’re going to hear "the lesion in that vertebrae is gone!" or "is inactive!" or "shrank by this much!"

 

That is not what happened.

 

While the targeted spinal lesion is not, in fact, noted on the report, suggesting that it's no longer a primary concern and suggesting that the radiation worked, the report does show additional new bone lesions. It is now showing four or five cancerous lymph nodes on the left side. And worst of all, three or four grape-sized lesions in her liver.

 

This whole time, we've been grateful that, if it had to be Stage IV, at least the spread was in the bones. Cancer grows most slowly in the bones. Treatments are much easier in the bones. Now that it's in her liver, in the tissues, it can grow and spread at an accelerated rate.

 

On top of that, it's now confirmed to be heterogeneous; it's mutating. This means it's not the same cancer we started with. It's obvious now that her current treatment plan is no longer effective, and we're going to have to switch to something more aggressive, but Dr. L can't prescribe anything until we find out what kind of cancer we're dealing with. If there’s a silver lining to this at all, it’s that we can biopsy a liver; bone biopsies are apparently very difficult and usually the sample gets crushed if they are attempted. All things considered, we’d still rather it had stayed in the bones.

 

I’m not sure where the best place in the story is to put this detail, but i’m gonna drop it here. One weird thing that keeps coming up is the results of her FDG PET scan from June. At the time, the scan report hadn’t shown anything concerning. Each time she gets one of these scans, though, the imaging department compares it to all previous scans, to track the progress of the disease. The report from the FES PET, the Cerianna scan, refers back to the June scan to mention some things found then, which weren’t on the report, including an allusion toward the heterogeneity. This scan, the December FDG PET, also refers back to the June scan, in some ways showing that the June scan could have predicted the developments we’re seeing now. Why, pray tell *the fuck,* wasn’t any of that on the June report??

 

Dr. L ordered a liver biopsy, STAT, to be collected within a week of her appointment, but even after collection it will take up to 6 weeks to get results. He laid out the testing timeline for us; how long it takes for this test to run, that culture to grow, etc. so it's not like they're just sitting on the sample for up to 6 weeks, it's literally just that running the tests actually takes that long. This is still incredibly maddening, though. The liver lesions did not appear at all on the September scan. Now here they are at the beginning of December. These new developments have all happened sometime within the last two months. What is another six weeks going to bring?

 

L's office, which i can't stress enough is the same office as Doctors S and G, did not submit his STAT order until the next day, Friday. Amanda called to check on the status and they told her that a STAT order will still take 24-72 hours to process. What! What is that?! The STAT order from Dr. C's office was fulfilled in less than 24 hours! Why does this office take so long to do anything???

 

Her flight is still scheduled for tonight. Monday morning, she was able to confirm that it has been approved, but the office that does the scheduling has not been returning her calls. The one lady she talked to at the office was even gruff and combative about it, only offering to email the person in charge of scheduling and being surly about that. A little later, they called her, but it was an automated message that asked her to leave a voice mail. Motherfucker you called us, why are WE leaving the voicemail???

Dr. L straight out recommended that she get better health insurance. During the appointment, he went on about how he's a good oncologist, he knows what he's doing and he knows he can treat this. He knows every cancer specialist in LA county and all the way to San Diego. He name dropped a particular specialist he wants to send her to at UCLA, but she charges $2000 for a 45 minute consult and he knows our insurance isn't going to cover that. He said her case is going to get complicated in the next six months to a year.

 

We're devastated by this news. It's not what we expected to hear right now. This was just supposed to be a follow up on the radiation, not...this. It's been very difficult to be 2000 miles apart right now. Amanda is fortunate to be staying with Alyssa at least, and i've been glad to have our dogs and D to snuggle with, and Nat, Anna, and Ashley have been available to talk me through some of the darkness. But it's been rough. I was kicking ass on the house the first four days after she left, and now i've just ground to a halt. Nat helped me with some packing on Sunday, and when she left, i thought i was inspired and energized to get back at it myself Monday, and then yesterday...i could not get started. It took me all day to write this update. I didn't even get started until almost 7pm, just stared at my screen and despaired. I don't know what to do.

 

Amanda's insight on the situation is that the cancer is a part of her, it grew from her, so of course it wouldn't be a normal cancer. Of course it would fight for itself every step of the way. That's what she would do and that's what she is doing, so why wouldn't the cancer do the same?

 

There was the initial shock, the sadness, the anger, but i'm gonna end this update the same way i ended the last one. She's still a freaking warrior. She's still on the offensive here. Her doctors keep telling her, “you do not act like a person who has Stage IV cancer” and “cancer patients don’t run marathons” so that still gives us a somewhat positive outlook on the situation.

 

She's not going down without a fight.

Update December 13, 2022 - Part I

 Hi friends. It's been a long time since i've given an update on Amanda's cancer journey. I think the last big post was in March of 2021, when we first got her Stage IV diagnosis and found the 4 lesions in her spine and 1 in her scapula. For that i am, as always, very sorry. A lot has happened. I'll try to summarize briefly before i get to this week's news. First comment below this is the summary, next comment after is the new update; skip to that if you're already up to date before last Thursday. The whole update is over 2500 words, i'm sorry, but there's a lot.

She started on her systemic treatments, which her type of cancer should be very receptive to. Additionally, on the recommendation of a roller derby friend, Bryan, and with the approval of her doctors, she started taking a turkey tail mushroom supplement daily. This was recommended by the research of world-renowned mycologist Dr. Paul Stamets, whom the Star Trek character is named after. I'll link his TED talk as well, for anyone who wants to watch it. We were told that things would look worse before they looked better. She had another PET scan scheduled for September.

 

Amanda had consistently searched out the results of her scans before seeing her doctors, which has led to her finding the bad news herself without context. After the previously-referenced Stage IV-revealing PET scan and the breakdown we had before we could see her oncologist, we thought she should try not to do that again. So after the September 2021 PET scan, we took off for the Grand Canyon with Alyssa, to get away from everything for a while, including the internet, ensuring that she wouldn't be able to find that report early. So when we did go into that meeting with her medical oncologist, blind to what the report would say, and came out of it with the news that everything had shrunk and the outlook was good, we were blindsided. Shocked. Completely unprepared. We told people, it was literally the first time we'd ever come out of that office with good news. At this point i wanted to send Bryan a message, "i think you saved her life," but i just...never did that. Though at the time i honestly did believe it.

 

Over the next year, the systemic treatments seemed to be working. Everything continued to look controlled. There were some shakeups on her care team, though. Her original medical oncologist, Dr. S, who we had always been lukewarm on anyway, left the practice. Amanda was moved to another medical oncologist, Dr. G, who was...awful. He was awful. The first time we met him, he walked into the room like it was a party and he was meeting old friends, and casually opened with, "So, how's the rib?" Rib? What rib? What are you talking about? And that's how we found out the latest scan had found something on her rib. She had two more appointments with him. The third one, he didn't even show up to. He sent his assistant in to handle the entire appointment. To be fair, his assistant, Dr. P, is great, and before she got assigned to Dr. L, if she could have taken on P, she would have; but Dr. P is not actually a doctor, she's a nurse practitioner. We think she should be the doctor. After that, Amanda requested a transfer to a different oncologist.

 

That brings us to Dr. L. L is very good. He's the most professional of the three, he sits down with us and shows us the scans, scrolling through the image slices of her body and explaining what we're looking at, and most importantly, takes decisive action. Dr. S's most grating downside was that she always went for the "wait and see" approach, which...idk have you MET Amanda? G also had that plus never seemed like he knew a single fact about her case and his bedside manner was nonexistent. 

 

On our first meeting with L, he recommended she get a Cerianna scan, a new type of PET scan that is so cutting edge, only 5 places in all of LA county provide it. It's much more sensitive, and should tell us whether her cancer is still receptive to her current treatments.

 

Despite her doctor ordering it, and her insurance approving it immediately, bureaucracy intervened; the institution performing the scan sent it to their corporate offices for review and approval before they would schedule the scan. They jerked us around for a month before she finally got the Cerianna FES PET scan in September.

 

The Cerianna scan revealed the rib "lesion" to be...maybe an old injury, perhaps? It's unclear what was actually going on there, but it probably wasn't cancer. However, it did show that there was an increase in activity in one of the spinal lesions, which was of concern. Also, it seemed to indicate that a lymph node on her left side was showing signs of cancer. This is extremely unusual; the primary tumor and all the infected lymph nodes they had removed were all on the right side, and cancer typically does not cross from one side of the body to the other. The doctors thought it was a "red herring," not a concern, probably not real. Her radiation oncologist, Dr. C, who she loves and has consistently been our favorite member of her care team, recommended another round of radiation to target that spinal lesion and blast it into oblivion. Dr. C also ordered an MRI to confirm what we were looking at before starting. She put the order in STAT; it was approved the next morning, and Amanda had the scan that afternoon, barely over 24 hours after seeing the doctor.

 

Meanwhile, our renters moved out of our house, and we've decided that, given what the Madison market is like nowadays, and that we never wanted to be landlords anyway, it's time to sell. We made loose plans to return to Madison and deal with that in October, after Amanda's first full marathon, but we were delayed by these new revelations both with Amanda's cancer, and with finding a huge cancerous lump in my dear sweet cat D's mouth. After a few vet appointments, including seeing a veterinary cancer specialist, we've determined there isn't anything effective that we can do for her, so we're just keeping her comfortable for as long as she's able to stay with us.

 

I took the dogs and D and headed for Wisconsin immediately after D's oncologist visit. Amanda stayed in LA for another week to finish out her new round of radiation. It was the beginning of November. She flew into Madison the same day she finished radiation.

 

The plan was to have everything done - get our shit packed and into storage, do a light remodel on the house, and have it on the market - by the end of November, and drive back to LA together starting on December 2nd. As it is now December 13 and I am still in Madison, it's pretty clear that we're a little off plan here. We haven't even finished packing. We're not pleased with it but we're probably gonna be here into January.

 

That brings us to the new update.