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.