Chemo

Today we met with an oncologist to discuss chemotherapy. He said, with the kind of cancer Karen had, and with it as developed as it was (stage 4), the risk of recurrence or progression is "extremely high." Even with chemo, the odds are still pretty good it will happen again. But, it's less likely. He says there aren't any clinical trials that might apply to her treatment, but the most common treatment has been pretty much standardized on for many years now. That's chemotherapy with fluorouracil in conjunction with the vitamin leucovorin, which makes the chemo more effective. And since it's advanced cancer, they use oxaliplatin as well. Collectively known as FLOFOX. She would come in, get 4 hours of chemotherapy, and then leave with a pump which would continue to deliver chemo for another 46 hours. This would happen every 2 weeks for 6 months. They can be less aggressive, but at her age, they don't feel it's worth the gamble of not being as aggressive as possible. She's young so it shouldn't be all that rough on her. He also said, with this kind of treatment, it wasn't even likely she would lose her hair. It sounds like she's up for it, and we've scheduled another appointment in about 3 weeks to make sure she's healthy enough and to go over things one more time before starting treatment.

The home health nurse only just showed up again yesterday. There seemed to have been some sort of snafu and the home health company "lost" Karen. It wasn't until Karen mentioned it to someone following up from the Mayo Clinic that they made contact again. The ostomy supply company also "lost" Karen, and we had to resubmit an order for supplies. The nurse that came out yesterday said they're the ones who should have submitted the order. We did get a starter kit, but have yet to receive the rest of the supplies. Not sure what we'll do it stuff doesn't arrive soon.

When Karen was (almost not) released last Friday, the doctor said there were going to be good days and bad days. And for her not to compare today to yesterday, but to think back to how she was a week ago. That said, it turns out there's been more bad days than good days. Karen's found that naproxen works better at relieving her abdominal pain than ibuprofen, so that's good. She is using slightly less Percocet, but a lot of the pain is from the gas in her intestines now. Those pains are much sharper than the abdominal pain she's use to, and the Percocet just doesn't do much for that kind of pain.

She seems down about how slow things are healing, and now it seems once she's just about recovered from the surgery, she's going to have chemo to deal with. Her heart rate still sits in the high 80s. I'm not sure when that will return to normal. I've seen her at 63 before. I've also noticed when the nurse takes her blood pressure at home it's in the 90s, and at the Mayo Clinic, it's in the 110s. That says something about all of this.

Brand New Day

Karen had a bit of trouble with pain last night, but managed to get some decent sleep anyway. She says it wasn't great sleep, but certainly better than she was able to get in the hospital. The doctors said recovery will be really slow, and it may feel like you're not moving forward, but to try not to compare one day to the next, and instead to think back to how you were a week ago.

What she found helped with the pain a lot at the hospital was to use a heating pad. So she put her heating pad on her stomach and fell asleep, only to wake up to burning hot staples. The hospital had an amazing heating pad that was temperature controlled with a water system which maintained a solid 42° C. It's comfortable enough to put directly on your skin or the clothes/gown directly above it. The one she owns is just a standard electric heating pad, so it gets to a much hotter 76° to 82° C, and can get too hot, even through layers of clothes.

A home health nurse came by today to set up future home health visits. It looks like there will be 3 visits per week for 2 weeks, and then 1 per week for another 2 weeks. They took her blood pressure and it's back to it's usual borderline hypotension. It was actually 86 over 52, which is lower than it's been the entire time she was in the hospital, but not unusual otherwise; so it would seem returning home has dropped her stress level greatly.

Some ostomy supplies were suppose to be delivered, but no order seems to have been put in - which is strange because they had called us about dropping off supplies a week ago. It seems like the social worker is to blame. We only saw her one other time before we left, and she didn't seem to keep up on what was happening.

Home Sweet Home

Well, we're finally out of there. They gave Karen some simethicone - you probably know it as gas x - and we just waited it out. They gave her the option of staying another night, but she was ready to go home.

SMILE and Grimace

While we were waiting on the release, 1:30 rolled around. Every Friday, from 1:30 pm to 2:30 pm, they play a BINGO-like game called SMILE. Instead of straight lines you have to make shapes; for example, a smile. Last time Karen won $12 in gift cards, this time she won $8 and I won $4.

Unfortunately, during this time Karen began having really bad abdominal pain. The two possibilities they are floating is either too much fiber, or gas issues. Either way, they seem to think it's related to eating food. It sounds like they want to hold onto her till 5 now to make sure it passes. Some of the nurses have been speculating that she won't get released till tomorrow now, but we haven't heard anything like that from the doctors. We're still planning on leaving.

Going Home

Karen is being released today at noon, but you know how the paperwork goes. She's on the maximum allowable Percocet dose, ibuprofen, Pyridium (for the bladder and urinary pain), and prilosec (to keep her stomach acid in check). They're going to prescribe her a nebulizer for home since they don't feel she would be able to use the rescue inhaler effectively with her diminished lung capacity.

She still gets up to a 5 out 10 on the pain scale from time to time, and she's having more pain around her stoma. The bladder still never drops below 200-250 ml or so, which seems to be an issue since the surgery. We saw increased urine output after switching switching pain meds, and Karen felt as if she were voiding more. But she still had quite a bit of pain, and shortly after posting yesterday, they did a bladder scan (using ultrasound) and found 243 ml in there. This caused quite a bit of emotional distress for her. It can get very painful and she was worried they weren't taking it serious enough. They've said since she's peeing frequently, and doesn't feel the urgency to pee afterwards, there's no need to be concerned. They've even gone as far as reversing their earlier recommendation to learn how to self catheterize, and are suggesting she just keeps doing what she's doing for a couple weeks and see if things improve on their own.

With all the excitement of leaving I almost forgot an important step in her recovery, solid foods. That was the last real hurdle before being dismissed. Karen had been building up to it for a while, but was a bit apprehensive after what happened last time. She started solid food yesterday with a late breakfast: a small bowl of cereal and an egg. They brought her food for lunch but she wasn't hungry yet and didn't want to push it. She ordered peanut butter and jelly with a side of peaches for dinner. They say her appetite will eventually return to normal. Breakfast today was the same, but with two eggs instead of one.

Soon

Yesterday Karen's diet went from clear liquids, to liquids, which is a bigger change than it sounds like. They also dropped the Fentanyl and tried out some different oral meds before ending up on percocet. Her pain level was tolerable enough to sleep, either that or the does was just high enough to knock her out. Either way, she got some sleep last night.

They say Karen should certainly be good to go home soon. We're hoping Friday. She's off the TPN now, and is cord, tube, and IV free. She's getting around a lot better and her voice is getting stronger after having had the NG tube out for a couple days. (If you're going to catch her in the hospital, now is probably the best time to do it.) That said, they need to do more bladder scans today; if she's still retaining 200 ml of urine or more, they want her to learn to self catheterize before being released. They say retaining that much urine can result in an infection. And, of course, she needs to try out solid foods at some point.

Moving Forward

Karen was doing well enough with her clear liquids that they removed the NG by yesterday evening. It's easier for her to talk with the NG tube out. It looks like she may be out as soon as Friday, but barring anymore setbacks, she should certainly be out by Monday.

After switching away from hydromorphone (Dilaudid) to Fentanyl, she seemed to have better luck emptying her bladder on her own. Apparently this is a potential problem with most of the stronger pain killers. She's still retaining 250 ml or so, and they say you feel like you need to go when you get above 300 to 350, but rather than doing the straight catheter every 3 to 4 hours, she opted to simply go to the bathroom every couple hours. So she didn't get much sleep, but this is progress.