Day -4

Okay, here are all the words that we never really hear or think about.  Jon is doing/having lymphodepletion (that's the chemo) and then, in a few days, a therapeutic cell infusion. The therapy is called CARVYKTI (ciltacabtagene auteoleucel) and the pharmaceutical company that makes this all happen is part of Johnson and Johnson -- Janssen Oncology. They gave him a piece of paper to carry with him at all times because CARVYKTI therapy can cause cytokine release syndrome or neorological toxicities, which may be fatal or life threatening, and may involve multiple organ systems. If he ends up in an emergency room at some point, he is supposed to give them this information. 

The chemo comes in two bags: one is Fludarabine and the other is Cytoxan. And before they give him that, he gets a big bag of saline through the IV. There is a lot of peeing going on.

We get to the IPOP at 8:15, they draw some blood from the PICC line, weigh him, take his blood pressure and then he is assigned a bed or a chair for a few hours. Everyone is very nice, explains everything carefully, and asks all the same questions every single time. So far Jon has nothing to report. A myeloma doctor breezed through to introduce himself, listened to his chest, and asked if Jon knew we could be expecting some "fireworks."  He said backyard fireworks are fine but 4th of July fireworks were not what we want.  He said boring is good.

A man in the cubicle across the narrow hallway this morning is apparently four days past the CAR-T infusion and he is still waiting for symptoms. He said, as Jon has said before, he is worried that it isn't working since he doesn't have symptoms. The doctor said a shoe could drop. It won't drop fast and hard, you will hear someone shuffling along and it will gradually become clear that something is different.

Tomorrow there is one more day of the same (today is called -4 because we are aiming for Day Zero for the therapeutic cell infusion). 

While Jon slept in the bed, getting chemo, I walked around outside on a crisp day and then came home for a little bit.  After he was set free, we went to a different Kaiser to try to pick up some meds but for weekend reasons, they didn't have the prescription yet, so that will have to wait until tomorrow. We tried.

While we were close to the Hawaiian restaurant in a gritty strip mall, we stopped there for lunch. The food is not amazing but the menu is authentic and we like ordering food that we only eat in Hawaii. The saimin tastes real. The Hawaiian Sun juice in cans is exactly, precisely what we drank in my childhood and beyond. Of course it all costs about 10 times what it cost when we were kids. We have now been to this restaurant four times in the last few years, I think, and we are honing our ordering choices. Last time I got Loco Moco and that was not so great -- too much of everything, but especially brown gravy.

Naps and football and some random London Parade on TV. If the room were warmer, Jon would be much happier. He likes to be toasty. We may need to ask for a few more blankets because I think this thermostat is just a toy to make us feel like we have agency.