Sorry I haven’t blogged in a while. The lack of posting has to do with a combination of not really feeling like it and also having Mom here with us. I’ll try to catch you up on what’s been going on, which really hasn’t been much.
The most important thing that’s happened is that I didn’t end up getting the lumbar puncture I was supposed to get last Thursday. I’ve had a terrible cough and head congestion going on for at least a week, headaches and generally feeling most lethargic. Dr. Ellis decided we should hold off on it, that he didn’t feel it would hurt anything to “make it up later”. I didn’t hesitate to agree, that was the best news I’ve heard in a while. I still had to get two other kinds of chemo on Thursday and start a couple new prescriptions. So far I can’t tell that the antibiotic and decongestant are working but my headache has gone away in the past couple days so at least that has improved.
I’ve spent a lot of time laying on the couch; my body is just so tired. I sometimes feel like my body and head are disconnected. My head tells me I can do things, normal things, but then I over-do it. I am ready to have energy, for it not to be a struggle to even leave the house, to make it through the day without having to take a nap. It will get better, but I need to mentally prepare myself that it is still going to get worse before that happens. There are 49 days in this round and on the 19th I’m supposed to have another bone marrow biopsy to make sure that I’m still in remission. We talked about starting the 5th round (late intensification) on the 22nd. I asked Dr. Ellis if we could maybe start on the 26th, since Ryan’s birthday is the 25th and I’d like to have a birthday party for him, but he doesn’t want to take that time off. The 5th round is another 49 day round that is basically a repeat of the first round and will require a couple nights in the hospital at the beginning. It’s a lot of chemo and a couple more lumbar punctures. I will get another dose of the chemo that makes me lose my hair, just when it was starting to grow out a decent amount. However, once that is over we can start “maintenance”, which lasts for 2 years and is IV chemo once a month and chemo pills everyday. That’s what I’m looking forward to and sometime in September I should be starting that. But enough about treatments.
Dad came down on Saturday and after dark that evening we did a few little fireworks for Ryan in the driveway. John’s parents and Shannon & Kevin came over to partake in the festivities. John had to work yesterday so Mom & Dad stayed the day but once John got home they headed down to Branson. Thanks to Mom for staying with us the past couple weeks, I’m sure I wasn’t a delight to be around and I know Ryan loved having you here. She is a tremendous help and I couldn’t do all of this without her.
Last night Ryan spent the night with John’s parents since John has to work again today. We headed over to Chris & Cindy’s house, their neighbors had a ton of food and fireworks. We played this game that involved a frisbee, a pole and a beer bottle. I played for all of 5 minutes before I was tired and bruised, but it was fun. The weather was perfect for sitting outside and it was a really enjoyable evening. I think the 4th is one of my favorite holidays.