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.

Amanda's Second First Day of Chemo (Video)