Yesterday was a nice day, but I learned the dangers of overdoing it. I feel like I should be able to do somewhat normal activity, but I guess I need to accept reality a little more for a while. First, I forgot to take my pain meds in the morning. Then, I wore a normal shirt so I was getting a lot of input from the port site all day long, and it got very irritated. We took the kids to the playground in the morning and just walking around helping Evelyn on and off the equipment really took the discomfort up a notch. Then we cleaned the house in the afternoon and by the time we were done I needed to just sit and be still. Not that I could really do that. My folks had watched the kids in the afternoon so we could focus on cleaning so we went to pick them up and had dinner with some friends, saw lots of neighbors and had some nice walks. Evelyn had a reaction to some sunscreen (not our normal one) so I had to call the on call physician to see what I could give her (Benadryl) and Fletch had a complete meltdown and had to go home with daddy early. By the time we got home and got everyone in bed I just collapsed on the sofa. My port was so hurty and itchy I just took off my shirt and laid there for a while. Clearly I need to wear shirts that don’t cover it for a while.
So here’s the problem in my head – I know that when I start chemo I’m going to be tired, I know I’m going to have to stay out of the sun, away from germs, etc. It makes me sad to realize that even though I haven’t started chemo I still have to think of these things. I already can’t do the same things I could do a couple weeks ago. I think about the things that I’m not going to be able to do with the kids. The things I’m going to miss. It’s hard. Of course it is worth it. I just have to keep reminding myself what I am buying by going through this.
I’m also having a hard time processing things – I know I’ve been in denial but I’ve also been under a lot of stress – not eating, sleeping, etc. But that seems to have passed. I don’t know if this is deeper denial or something else all together. Now it seems like it’s not happening and I’m not feeling that stress. I’m eating pretty normally, sleeping pretty well, and not thinking about the cancer much at all. I’m not sure what that is. Maybe it’s because I have other areas to think about that are actively causing discomfort. Maybe not. I don’t know. The chemo is starting in 2 days, but it doesn’t seem real at all. I’m getting ready, but it feels like I’m going through the motions rater than preparing for something real. That’s why getting sore and tired catches me off guard. Why I forget to take my pain pills. Like if I don’t make it real, it won’t be. I’m starting to understand how people can just bury their head in the sand and pretend it’s not happening.
Part of the motions I’m going through is cleaning out the house. I know that chemo is going to drastically effect my white blood cell count and I need to be in a super clean environment. Especially going into cold and flu season. So we’re trying to clean all the clutter out and get everything super clean. I know it will be harder and harder to clean as it makes me weaker, and I know I need to do it so we’ve been working on that. It just doesn’t seem real. But it will be nice to have a clean house.
I’ve talked to Fletch about what is going to happen. He does not do well with surprises. He knows that I am sick even though I don’t act sick or look sick right now. He knows that I will be having operations and that I’m going to get some medicine to kill the cancer which will make me sick and make my hair fall out. He knows I have a robot port that the medicine will go in. He knows he has to be gentle with me, and help take care of me. We’ve talked about these things but I wonder what his reaction will be when they start happening. Since we’ve discovered how high our insurance deductibles and out of pockets are, we have had to take a break from his therapies even with the diagnosis. This is not the best time for that and he’s reverted to some of the more crazy behaviors (such as the melt down last night). I have to find the time to fill out some grant paperwork in the hopes that we can get therapies started back up. We don’t see any way to make our annual trip to Atlanta and Disney World in November/December since my chemo will go through January. Then surgery will start most likely start in February. Fletch has been so excited about our trip, I know he’s going to be disappointed. But we’ve told him we are going to have a big party once the cancer is all gone and go on vacation then so hopefully he will roll with everything. We aren’t making a deal about canceling our trip, just focusing on being healthy and what we will do then. He asked if we could have cake at the party. So sweet.
I’ve tried on my wig and head covering which Evelyn didn’t like one bit. I guess we’ll see how she responds when things happen for real, I assume she will take a little while to get used to it and be fine. She most likely won’t remember anything.
We are getting the details for the food train set up and will probably get that sent out this week. Huge thanks to everyone who has thought of us this week – to everyone who has sent us something, donated to the fundraiser, mailed a card, said a prayer, made a comment and kept us in your thoughts. We appreciate it more than we can say. It goes without saying that this is an incredibly hard time. We appreciate your support more than we can say.
Today is the annual neighborhood picnic at my parent’s neighborhood. They are getting a bounce house for the kiddos this year so they will be in heaven. It should be a fun day.