Wednesday, December 18, 2013

Chemo and Ranch

We went in bright and early for our scheduled chemotherapy treatment at 8:15 am this morning. The place was empty. There was only 2 or 3 other patients there. I don't know if it's because it was earlier than normal, or if it was due to it being a Wednesday instead of a Monday. Her temperature was normal and her blood work came back fine - well, better than last time - and she was OK'd for chemo.

They started the hydration - saline solution - with something for nausea, Aloxi plus Emend. This is the first time I caught the Emend part of the mixture, but upon looking into, it seems pretty normal to give with Aloxi. And when I asked about it, they said they had always given it to Karen. The reason I asked however, was due to the nausea she was having. It seemed to be so well contained last time, it was strange that she was so nauseous this time. She was quite disappointed, and said she thought they had worked this out last time. When I mentioned it, they said the only thing they could give her would be Ativan (lorazepam). This confirms my guess from the last treatment; it was certainly what they gave her last time. The nurse asked her if she wanted it, and Karen was eager to get anything that would help with the nausea. She went from alert to sleepy, and nodded off for a bit.

When she woke up, the nausea had not only passed, but she had an appetite. And she wanted food. They allow you to bring food in with you while you're getting chemo, and there's a Carl's Jr in the same strip mall as Arizona Oncology. So we looked up their menu online and I went over and picked her up some fries and fried zucchini. Her hands were already cold sensitive to the point where her fingers burned when she moved her IV drip stand, so the warm food felt good on her fingers. Karen and I agree, Carl Jr's house dressing is pretty gross - at least their buttermilk ranch is acceptable.

The hydration they're doing adds roughly an hour or so to her treatment, but this was the first time she was actually able to sleep during chemo, so it didn't really seem much longer. It also didn't seem to hit her as hard as last time, and she's been up most of the day since. She laid down about half an hour ago to read and fell asleep, but that can be hard to do even when you're not on chemo. All in all, I'd she's off to a good start this round. Let's hope things continue well on through Christmas.

Tuesday, December 17, 2013

Small Reprieve

The effects of chemo were about the same this time around. While Karen still had some nausea, it has been much better managed this time around. Certain strong smells still make her nauseous, but she was able to eat much better. She had a migraine again but she's no stranger to migraines and once every two weeks doesn't seem unbearable. Her cold sensitivity was much worse. She wasn't able to drink anything that wasn't warmed for about a week after her pump was removed, even room temperature liquids were too cold. She's also been getting canker sores in her mouth since she started chemo. However, since that can happen from time to time, she didn't give it a second thought until it persisted into her second treatment.

So on Monday we saw the physician working with Karen at Arizona Oncology. After mentioning the canker sores, the doctor confirmed that it's probably a side effect of the chemotherapy, and she wrote a prescription for a mouthwash. It's a big mix of things, but is mostly just Benadryl. The directions say to rinse with it and then swallow. Karen's also been fighting an upper respiratory infection of some sort for over a week. They had given her antibiotics to make sure it didn't turn into anything worse, but her nightly fevers had gone up to 100.1° F and that concerned the doctor enough to postpone chemo a few days. We rescheduled for Wednesday, with pump removal on Friday.

Wednesday, December 4, 2013

And It's Off

I'm glad to say I couldn't have been more wrong about yesterday. Karen was awake and alert most of the day. I'm not sure if it's because she slept through Monday, if it's the new medication they gave her via IV, or if she's just getting use to the chemo - can you do that? She seems to be handling it much better this time around.

We were seeing her general care physician yesterday. He's been getting updates from Mayo Clinic via fax and is keeping up with everything going on. You can tell he really cares about Karen, and it's always nice to hear an outside medical opinion about her situation. It also makes it easy to get any paperwork filled out, such as return to work, or disability forms. During her visits, we have literally sit down with the doctor and his assistant - who happens to be his wife - and gone over whatever paperwork we have. When she asked about going back to work he was quick to say, "No, don't do that!" But said he'd be willing to sign a work release if that's what she really wants.

Karen has been having doubts about going back to work during her chemotherapy, especially since it's been so tough on her. I know she really likes everyone she works with and misses them, but it really seems less and less likely that she'll actually be able to work. She's been asking everyone what to do. I want her to be happy, but don't know what to suggest. She has a lot of side effects from chemo. Even if she can get around the usual nausea that bothered her almost the whole time the first two weeks, strong smells often make her nauseous. She's still on prescription pain medication. She never got over the cold sensitivity with her hands, it makes them tingle and hurt. Her white blood cell count is way down, which means she's susceptible to disease. And sometimes she just has to sleep. Staying out of work makes sense, but then what about all of her work friends? What about the satisfaction a good days work brings her? What about her job?

Karen's father came down to visit today. She figured her pump was about finished when he got here, so we went to Arizona Oncology to have it removed. We only waited 5 to 10 minutes before they took us back. There was 0.5 ml out of 100 ml left in the pump, but they disconnected it anyway. It was 99.5% finished; I guess that's good enough. We asked for some IV fluids like we had talked about with the PA, and another 5 to 10 minutes later they had it going. It's just a sterile solution of 0.9% sodium chloride, aka saline. This is suppose to help with the dehydration Karen's been experiencing, which is likely making her sleepiness and nausea worse, as those are symptoms of dehydration. It took about an hour, but Karen did feel better.

There had also been talk of receiving more of the anti nausea medication Aloxi, to be given during her return visit. But, like the saline, it didn't seem to get written down. We didn't have to twist any arms to get it, but when I asked they had to run off for a few minutes to get it approved. If I didn't think to mention it, we'd have gone without. The Aloxi is normally only given on the first day of your chemotherapy, and it stays in your system for two days. This explains why her nausea didn't really get bad last time until the pump came off, because the pump comes off after two days. Hopefully this will let us stay ahead of the nausea this time.

So far so good.

Tuesday, December 3, 2013

Round Two

So today was the start of Karen's second chemotherapy treatment. She had pretty much recovered from the first one, but it was quite hard on her. So hard in fact, they almost didn't do chemo this time. You could tell she was really fretting another treatment.

Our day started with an appointment with the physician's assistant (PA). The title might make it sound like she's just someone who runs around doing little things for the physician, but it's a formal title and PAs are licensed to practice medicine. She asked us about how it went last time to see what they could do to make things better this time around.

The cramping in her hand was the worst that first day, and calmed down a lot when they took the pump off on the third day. The PA wasn't fazed by this. We didn't feel the cramps were bad enough to medication, and Karen's all for taking less medication if she doesn't need it.

The cold sensitivity pretty much stuck with Karen both weeks. After that first week she could eventually drink cold liquids, but even during the second week her hands were sensitive to cold. As I had mentioned before, grabbing something out of the fridge felt like she was taking something out of a -70° freezer at work. I don't know if there's anything that can be done about this, but the PA did note it.

Karen only experienced the one migraine early on, and she wasn't even sure it hadn't been brought on by the weather system that blew into town and made it storm like crazy. The PA was content that the medication Karen had for migraines worked.

The diarrhea I mentioned last time subsisted through Friday. Due to the stoma, it's not as difficult or frustrating a problem as it would otherwise be. But she did have trouble staying hydrated even after that had stopped. They told us hydration is a common problem and that she'd probably feel better if she got some fluids via IV when she came in to get the pump disconnected.

The cheap thermometer we had broke, so when things turned bad again that second week, we got another one. It's a much nicer one this time, a temporal artery thermometer. They're very quick and easy to use; you just run it across your forehead. That whole last week she had low grade fevers at night. Mostly around 99.5°. The highest we saw it at was 99.7°. We were instructed to call if it ever got up to 100.5°. So we never had to call in, but we mentioned it to the PA during our visit. She said fevers are not uncommon for people on chemo, and if it does break 100, to try taking some Tylenol to bring it back down.

We also explained that Karen was nauseous most of the two weeks. While she started to feel better Sunday - four days after she finished with the pump - and was pretty good Monday, she was nauseous and weak again by Tuesday night. It wasn't until this Friday that she started to feel good once more. The PA wasn't happy to hear this or how little Karen had been eating. So Karen is going to get something in addition to the other anti-nausea medication during chemo to help with the nausea, and something extra when she comes in to have the pump removed on Wednesdays. She also increased her dosage of ondansetron (Zofran).

We didn't notice until later that the Zofran had been "increased" to from 4 mg every 4 hours, to 8 mg every 8 hours. It works by blocking the receptors in the brain that receive the signal telling your body to be nauseous, so they recommended, rather then waiting till she's starting to feel nauseous, or before a meal as we had been doing, to just take it 3 times a day, the same time, every day, so it would constantly be in her system.

From there we found some seats in the chemotherapy room. The first thing they do when you sit down, aside from access your port, is blood work. They run a complete blood count to check your blood cell levels since chemotherapy can mess with them. While both her white and red blood cell counts were low, it was the white blood cell count that really seemed to concern them. They said if it were any lower they'd have to delay things a week. They ran some more blood tests and finally decided she would be OK for chemo.

The steroid they gave her last time didn't give her that boost of energy this time. They said the extra anti-nausea medication would knock her out, which leads me to believe it's actually lorazepam (Ativan). It's normally for anxiety, but off label it's used as an anti-nausea medication. A couple times when Karen was having trouble with nausea at Mayo Clinic they told her if she were anxious she could get Ativan which would also help with nausea. And then they'd ask if she were anxious. But she almost always said no. I wonder now if it was just some sort of technicality. When she did get it at Mayo Clinic, it made her drowsy like this.

Her cold sensitivity started much sooner this time, and she says she's more sensitive this time, and the effects last longer. Even just touching a cold door knob can set it off, but to be fair, I think it's much colder now. And also like last time, her hands are cramping and it hurts in her jaw and neck when she chews things. Water has that same bad taste as well. She hasn't had any trouble with nausea but if I recall correctly, it didn't get bad until after the pump was removed. She also didn't get the hiccups last time until then as well. I'm not sure if these things will start happening sooner though, or if it will follow the same pattern every time.

When we got home she ate a little bit of food but was having trouble staying awake and went to bed. She slept most of the day but got up a bit in the evening long enough to eat and get another migraine. Once again she had to take the maximum dosage of her anti-migraine medication to get rid of it, which also tends to make her sleepy. So that was it for her Monday. I assume she'll sleep through most of Tuesday and Wednesday as well, since she did last time. She has an appointment tomorrow with her general care physician, but I'm not sure she's going to be up for it. I don't think we had the chemo schedule fully planned out yet when the appointment was scheduled. I guess we'll see.