Following are caregiver notes from Kathy and Jan’s stay, July 26 to 30:
Jan and I drove from Salt Lake to St. George on Saturday to visit Jan’s brother and stay the night. We arrived in Phoenix Sunday night at about 9 p.m. Melissa was arriving at the CTCA directly from her trip to Laguna Beach. I talked to her on the phone and said we would see her in the morning. She had her girl friends take her directly to CTCA because she was feeling very nauseous and had a lot of pain. Wes got home late from a short weekend trip to Mexico with his guy friends. Jan and I set to cleaning up the condo and went to bed early.
Monday morning, Jan and I spent a good amount of time cleaning the condo and doing tons of laundry. I washed all the bedding, put on clean sheets and took care of the kitties. I made sure the kitties got fed, brushed, nails trimmed and litter cleaned.
Jan and I went over to CTCA at noon on Monday. Melissa was at an appointment to get X-rays so we went to a Thai restaurant nearby for lunch. The Thai place near Fry’s is pretty good.
When we saw Melissa she told us about her trip to Laguna with her girl friends. She was really excited to watch the surfing competitions. But she got nauseous and left some yum yums right there in the sand. No big deal, just kick some sand on top and pretend like nothing happened. But it happened twice and Melissa asked her friends to take her to CTCA when they drove back. I think it is incredible that Melissa was able to take this trip. It is great for her to be able to feel normal and spend time on vacation.
Melissa looks much skinnier than the last couple times I saw her. Here leg is much less swollen and her face is skinnier. This may be because she is taking a lot less steroids. Mel took us for a tour of CTCA. She rode in the wheel chair. This place is very nice. Immediately I noticed how nice everyone is. Her digs are sweet. The room is large and has a “crabouch” in the corner for a guest to sleep on plus a reclining chair. Nice flat screen TV with lots of channels.
The place is very quiet – no beeping machines or loud kids. The cafeteria serves healthy food and is very inexpensive (minus that they close at 7 p.m.). Jan and I enjoyed our anniversary dinner with Mel for only $8. Cheap date, awesome. There’s a salon in the building, a PT room and Jan’s fav, Starbucks happy hour. Don’t miss the $1 lattes between 2 and 4 p.m.
People talk about how hospitals are the worse place to be when you need to get rest. CTCA is so quiet and peaceful it is totally easy to sleep, especially if you are on the third floor. I like the library where they have a game room with tons of games and puzzles to borrow.
Melissa was very cold on Monday and Tuesday. I don’t blame her. They keep the building at a frigid 68 F. Bring a sweater. Melissa likes to go outside to get warm. 115 F should do the trick.
On Monday Melissa got X-rays of her abdomen. They gave her a dye to look at her intestines. The doctors want to know why she is nauseous. I got to see the X-rays. Nothing abnormal. It was cool that I could see all the work they have done on her spine. The vertebroplasty lights up on the X-rays. She totally looks bionic. At 3:30 p.m., Melissa got an acupuncture treatment to try and help her nausea. They leave the needles in for about 20 minutes. She was resting and I had to keep reminding her to lie still so the needles wouldn’t fall out or poke her.
She listens to relaxing music during the treatment. There are relaxation videos to watch on the TV like “Playful Puppies” and “Curious Kitties.” The acupuncture guy (Dorian) said the effects may take about a week with daily treatments. It tends to take a week for each month the symptoms have been occurring.
As you know, Melissa changed her chemo drug about a month ago. The Tarceva is supposed to have mild side effects that may include a rash similar to acne on her face. I see no sign of any rash, but this may be not-so-good since side effects tend to be proportional to effectiveness.
I totally love the new bracelets that Melissa got to sell on her site. She is selling them for only $25 and they look like they are worth much more. I plan to buy one and so did many of the people Melissa met in the hospital.
Dr. He is Melissa’s primary oncologist with CTCA. I already like him. I met Dr He at 4:30 p.m. on Monday when he came by to talk with Melissa about the effectiveness of the Tarceva. The side effects do not seem to be there and that may not be good but it is still too early to tell how well it is working. Dr. He says it is not time to be discharged until he sees Melissa eating and drinking well on her own.
Tuesday morning/afternoon was very uneventful. Melissa slept almost the entire day. Dr. Rodriquez came by multiple times at the urging to answer Melissa’s questions about the steroids she is currently on. The doctors are concerned about her adrenal gland. She is not producing the needed levels of steroids on her own. Dr, Rodriquez suggested this is because her body got used to the high levels of steroids she was on previously.
This may all be related to her nausea and fatigue. It is possible that her body had become addicted to the steroids. She is taking cortef now to help her adrenal gland and hopefully help to ween her off the steroids. This new steroid is supposed to be almost 10 times less strong than the past steroids she was taking. The purpose of the new steroid is for a couple of reasons:
1. She could get very ill if she doesn’t take something to produce the hormones that she is not able to produce due to the previous steroids. Her adrenal gland essentially stopped producing the hormone because she was getting such high doses of it with the old steroid.
2. It should help her to start having more energy and feeling better in general.
3. The amount that she is now taking should be a small enough amount to sort of jump start her adrenal gland and have it start producing the hormone on its own.
Understsandably, Melissa is concerned that the steroids would make her stomach distended and her body bloated similar to the old steroids. Dr. Rodriquez was very confident that because of the lower dose and the different type of steroid that this would not happen.
Tuesday evening, Melissa went to visit another patient at CTCA. Kim is a 29-year-old mother of a 5-year-old girl. Kim has stage 4 colon cancer. The cancer has spread into her lungs and she has a lot of fluid on her lungs. Kim looked so weak and skinny. She had similar problems with a blood clot and swollen legs. Unfortunately, Kim is not able to take any blood thinners due to risk of rectal bleeding.
Kim is the sweetest girl and has a great support system around her. She constantly has multiple family members in the room with her. The two of them traded stories and it brought many to tears. The family did a prayer for both of them and it was so heart warming. Melissa gave Kim a bracelet and she loved it. Later at night, Melissa and I took a long walk around the outside of the building. She is so strong sometimes.
When I arrived Wednesday morning, Melissa told me she was being discharged. CTCA is supposed to e-mail her a schedule of her appointments for the next two days. Those appointments should include acupuncture, PT, check on her wounds on her bottom, pain management and nausea management. She has some sores on her bottom that CTCA gave us an ointment for. Already it looks much better. I think it was simply crappy tree bark toilet paper.
As part of her discharge, a few new meds have been added. She is taking Requip to help with restless legs. Cortef is the new steroid. Reglan should help with digestion and nausea. Lasix (furosemide) is a diuretic. And Silvadene is a cream for skin sores.
We are canceling the Zantac because it affects stomach acid. Melissa needs to be careful of taking food or meds that affect stomach acid because it affects the absorption of the Tarceva.
Wednesday night and the boys are watching a movie as Melissa relaxes at home with her kitties and I type up my notes. I look forward to coming to Phoenix again but fear it might not be soon with school starting. Please look over the caregiver schedule and see when you can help out. Megan and I have to start school soon and won’t be able to help as much. We may tend to think that Melissa does not always need the help, but she wants the help and deserves our support. I love ya Miss.
Link to blog: http://themelissawaller.wordpress.com/2009/07/30/kathys-caregiver-notes/