It’s Friday afternoon and Kayla is at home resting comfortably in her own bed after spending the week in the hospital for inpatient chemotherapy infusions. It’s been a long week and it’s good to have her home.
Here’s a rundown of how things went:
Monday – Since we already got her pre-chemo things done last week, like blood labs, CT, and pulmonary function test, we just had to wait for a phone call from the hospital on Monday morning telling us that a room was ready for Kayla. We got the call around 8:00 and off we went. After getting settled in her room, she was given some pre-chemo meds to help with nausea, some IV fluids to get her hydrated, and then her first chemo medicine, which took 10 minutes! Then she was given another bag of fluids, then the next chemo medicine, which took 2 hours. Another bag of fluid. Then the final medicine, which took an hour. Then one more bag of fluid and Kayla was done for the day! Since it was just the first day, there weren’t really any side effects. The doctor came and talked to us and told us that Kayla’s CT last week showed two more additional tumors growing and that she most likely will need 4 cycles of chemotherapy instead of 3. Boo. We spent the rest of the day hanging out and taking Kayla for short walks to keep her moving. I stayed overnight with Kayla and we both had a good night’s sleep.
Tuesday – Kayla woke up with nausea. Luckily, the anti-nausea medicine given to her seemed to help pretty well and so it was another day of chemotherapy, this time with only two medicines. Same routine: pre-meds for nausea, IV fluids, chemo medicine, IV fluids, chemo medicine, IV fluids and then done for the day. She slept a lot, but still had a pretty good appetite. Again, we both got a good night’s sleep.
Wednesday – Kayla again woke up with nausea, only now the anti-nausea medicines didn’t seem to be helping. She was nauseous and vomiting all day long and didn’t eat or drink anything. Prior to Kayla starting chemotherapy, I researched tips to help with nausea; I talked with friends who have been through chemotherapy and I was armed with things to help Kayla: ginger candy, essential oils to rub on her feet, snacks for her to eat throughout the day, like applesauce and crackers. Kayla didn’t want anything to do with this stuff. She hates the ginger candy. She can’t eat anything when she feels nauseous. I have essential oil that’s supposed to help with nausea, but Kayla doesn’t like the smell, so instead I used lavender because I heard that can work, too. I can’t tell if rubbing lavender oil on her feet helps or not (at the very least, the room has a very pleasant, calming scent!) Thank goodness the IV fluids keep her hydrated. It’s heart-wrenching to watch her be sick and not be able to fix it. The medical team gave her something new to try before she went to bed and whatever it was knocked her out and she slept all night and didn’t have any nausea.
Thursday – Kayla woke up feeling pretty good. The doctors ordered a new anti-nausea medicine for her prior to starting chemo that day and it’s a slow-release medicine that lasts for about 3 days. It helped a lot and Kayla didn’t feel any nausea for most of the day. She slept most of the day, but was able to eat breakfast, lunch, and dinner. She felt a bit nauseous when she went to bed, but she was able to sleep through the night.
Friday – Chemotherapy started really early. Pre-meds were given at 4:00 a.m. and her first bag of chemo medication was running through an IV by 4:50 a.m. She had some nausea off and on, but nothing too terrible. The nice thing about starting chemotherapy that early in the morning was that she was discharged before lunch. Prior to discharge, the nurse talked to us about what to expect over the next several weeks. She said that this first cycle will be pretty indicative of what the rest of the treatment will be like as far as how Kayla handles the medication. Now that they’ve figured out what medicines help her nausea, the next inpatient stay in a couple of weeks should go smoother. She said that the slow-release medicine should still be in her system for most of the weekend and so her nausea should be minimum. However, she will be really tired and will want to lay around and sleep most of the time.
Her next chemotherapy infusion will be on Monday, but it’s an outpatient infusion that will just be for the medication that takes 10 minutes in the IV. Then she is done for a week.
Besides the nausea and fatigue, one of the big side effects has been the change in Kayla’s taste buds and appetite. She has a metallic taste in her mouth and some things that usually taste good to her make her want to throw up, and so we just don’t know at this point what she’ll want to eat. I hope to feed her lots of nutrient-dense food to help her immune system, but I honestly don’t know how much of it she’ll want to eat. We’ll just have to see how things go, but she wants to try to keep her diet as clean and healthy as much as possible. We are trying to avoid junk food and sugar as much as possible. I’m hoping that she’ll be able to tolerate smoothies, as that will be a great way to get in several servings of fruits and veggies and also boost her calorie intake.
This first cycle will be a learning curve, I know. We will make mistakes, but we’ll also learn what does and doesn’t work to make Kayla as comfortable as possible.
The medical team taking care of Kayla is awesome. The nurses fight over who gets to take care of Kayla. We’ve gotten to know many of the nurses and they are all wonderful. Kayla’s doctors are not only compassionate and kind – they are experts in this field and know their stuff! The ARNP that sees Kayla every day is wonderful. We just can’t say enough about the care that Kayla is getting. I can’t imagine how much harder all of this would be if we didn’t trust the people taking care of Kayla.
It’s been an emotional rollercoaster for me this week, but I’m just happy to be sitting here at my own dining room table, blogging and drinking a cup of coffee made in my own kitchen with my dogs laying close by. Kayla is napping in her own bed. I’m going to be able to make dinner tonight instead of eating hospital cafeteria food. I’ll be able to sleep in my own bed tonight. Little things that I need to enjoy because most of our focus over the next few days will be helping Kayla with nausea, rest, and nutrition.
Any suggestions to help with nausea for those out there who have gone through chemo or know someone who has gone through chemo? Suggestions for healthy foods or snacks that a 19-year-old with sensitive taste buds will eat? Any words of wisdom would be appreciated!