Monday, June 14

Chemo Round 2, Day 7

I felt pretty down all day today. I envy everyone who is enjoying their summer, doing fun things with their families, taking vacations, etc. I miss waking up in my own bed, or being at home where no one is just walking in on me every fifteen minutes no matter what I'm doing (well OK, maybe since I have kids that's a pipe dream anyway, but at least it's just family walking in on me at home and I'm not in a fishbowl for everyone to see). I miss being able to get a simple cup of coffee for myself whenever I want it, without asking someone else to get it for me. I miss having some time to myself, to be able to read, answer email, do something relaxing, instead of just collapsing from ehxaustion at the end of the day. I miss watching Collin be able to walk around freely and play, instead of being tethered by the tubes that feed him and give him medicine. I miss getting him to sleep and not having someone come in and wake him eight minutes later so that I can just do it all over again when they leave, or not be able to get him back to sleep at all even though he really needs it. I'm angry that his (and Neya's) normal childhoods have been interrupted by this time we will never get back. I miss walking through my house instead of living in this room where the available floor space is not much bigger than my bathroom at home. And I feel guilty complaining, because being here is what has kept Collin alive. The nurses and doctors are wonderful and caring people. And as eager as I am to get home, in a bizzarre way I'm afraid to leave the hospital, away from all the extra help and care and eyes to make sure nothing is wrong. I just wanted to have a good cry today to let out my frustration, and I couldn't even do that in private. I don't want to be analyzed, or told to take a break, leave for a few hours, etc. It wouldn't do me any good anyway, because there's no way I wouldn't be worried and stressed the whole time. I just wanted to have a few minutes to feel what I was feeling, and let it out so I could move on.

I was also nervous about the IVIG infusion today. In the first round of chemo, Collin had a pretty scary reaction to the IVIG when it was given. Many precautions were taken today to prevent the same reaction (pre-medicating him with Tylenol and Benadryl, running it at a much slower rate), but the memory of the last experience had me feeling a bit scared. He didn't have any breathing problems this time, but his blood pressure went up enough that he was given a medication to bring it down. Luckily the infusion is finished, and he seems to be doing OK now. He fell asleep a little after 7:00 pm, and woke up a little after 8:00 pm and was very uncomfortable. I requested a dose of Morphine, and he's back asleep now. I hope he has a restful night, but his blood pressure will be checked hourly, so I'm not holding out too much hope that either one of us will get a lot of quality sleep.