One Down

So yesterday, about 12:30 pm, the pump beeped to let us know it had finished. Karen was napping, but got up and clamped the tube from her port and turned the pump off. They told us to just come in whenever it's done. It took us about 30 minutes to get ready and another 30 minutes to get to Arizona Oncology. We only waited several minutes before they took us back and removed the pump.

To follow up from the last post, food hasn't been bland, so dinner that first night was probably just boring. The taste of water has pretty much returned to normal since this morning. The cold sensitivity is starting to fade already, but the whole time she was on the pump, if she touched something too cold it burns and tingles, and if she drank something cold it felt painfully cold down the back of her throat. If she wants a drink of filtered water from the tap in the middle of the night when the pipes are coldest, she has to warm it to room temperature in the microwave.

It was Pie Rush Wednesday at Village Inn, so after the pump was removed, we stopped for fries and a slice of French Silk Pie. She enjoyed the fries but got full before getting to the pie and decided to just take it home; this might have been better with her cold sensitivity anyway. The Village Inn is adjacent to a Tutor Time who was busy towing someone who parked in one of their designated parking spots, even though it was a handicap spot. The manager put a sign up on the door to let other customers knows that Tutor Time was towing anyone parking in any of their designated parking spots and that they had no control over the situation. I still can't get over them towing a car with handicap plates parked in one of their handicap spots.

The fries, which are normally quite safe, came out of her stoma quite quickly, nearly as whole as they were when they went in. Her stomach acid seemed to eat away at the wax ring much quicker than it normally would and was a bit painful. So this is diarrhea with a stoma, slightly better than diarrhea without one. While there would be no need to rush to the toilet or anything, she did get dehydrated and felt quite sluggish. Although, to be fair, she felt quite sluggish most of the time she was on the pump.

While she did have some energy Monday, she slept a lot both yesterday and the day before. She also had a pretty bad migraine yesterday. She had to take two doses of her migraine medication to get rid of it, and as I mentioned before, she doesn't like how she feels when she has to do that. Headaches are a possible side effect, but it's going to be rough if it brings on migraines every time.

One side effect they didn't tell us about is hiccups! They didn't start until after the pump was removed, but she seems to be getting them more frequently as time goes on. The hiccups seem to annoy her, but she says it's not that bad, and she can control them well enough.

Before the big surgery, when we had asked if they were going to do chemotherapy afterwards, they said it depends how "well" things go with the surgery. So when they told us the surgery went well, we thought maybe there'd be little to no chemo. But it turns out we interpreted the message backwards, if the surgery went well then she's strong enough for chemo - perhaps if they couldn't remove all the cancer they'd opt out of chemo and just let her die as peacefully as possible? I don't know. When we asked how long they would want her to be on chemotherapy, they told us 6 to 12 months, again depending on how "well" it's going. Initially we thought that meant if things go well, they'll do the shorter treatment, but, like before, it sounds like we got it backwards. Doing "well" means the chemo is preventing new tumors from growing and she's healthy enough for more chemo. So, if everything goes "well," we're looking at 12 months of chemotherapy.

She's had but one treatment, and is already saying she doesn't want to do chemotherapy anymore. I asked if it was worse than she expected, and she said no, but she had expected it to be pretty bad. The doctors - and everyone else we talk to - warn us that it gets worse over time. So I'm not sure if this first session was bad enough on it's own, or if she's just trying to imagine it getting worse. We seem to have come to an agreement, and she will continue, but I hope it's worth it for her in the end.