Expectations can be misleading. We always thought that we’ll be sent home when Rachana feels good. So the excitement of going home quickly worn off when she continued to feel very tired and just plain uncomfortable. The first night home and the second day were probably worse than when she was in the hospital. She eat well but hardly spoke a few sentences, was in pain and didn’t react to any of the excitement. The next 1-2 days were better, comparatively.
The first clinic visit on Monday May 2nd was tiring. It was a 35 min ride with no traffic. They drew blood from the other hand with no ports. It was disheartening to watch her not even flinch but rather just move her hand a bit to the needle poking. When she was healthy that would have been a shriek to express pain and a few hours of complaining. After the blood work they changed the dressing and cleaned the ports. On the way back home she threw up a few times and to make matters worse, we were stuck in rush hour going back from the hospital in Dallas to Fort Worth, which took close to an hour. The next day was probably the best day of the week. She was bright, happy, spoke with a few friends and also got into arguments with her mom; it was the most normal day we’ve had in weeks. The two days after that were bad again with a fever scare when she touched 100. It’s completely unpredictable when her body decides to slow down or speed up.
The second phase of chemo is scheduled to start on Monday May 9th, and it’s going to be an all-day event, we have appointments at 7:45, 8:30, 11:00, 1:15 and 2:00. The first one is to draw blood, the second to discuss blood results, the third is for a chemo injection in the spine, the fourth for dressing change and cleaning the IV ports in her arm and the fifth for IV chemo. This phase is all an outpatient process, so it’s very similar to a Dr. visit with sitting in waiting rooms and getting the process done in chairs rather than a bed. This will definitely become an issue on days when she feels worse.
This second phase, which is 8 weeks long, primarily has chemo on Mondays, and tests on Thursdays. We might have to go on other days too for additional tests or procedures depending on test results. There are also injections in the muscle that have to be given at home and they’ll show me how to do it. It’s going to be a few hectic weeks.
Our neighbors need a special mention here. They’ve been awesome in continuing to help us with taking kids to school and back, and also showing great restraint in making sure Rachana stays protected especially while she is susceptible to infections. On days when she was feeling good, she had calls with all her buddies and saw some visitors too. Kids have been good too with the frequent hand washes and sanitizer. Over all a good week. We are all praying for this phase to have milder side effect than the previous phase, especially when it comes to mouth ulcers!