I managed to make it to work today with Jackson. The bone pain is on the downswing, and though I had problems sitting in the office chair for too long, it was a good day. I was able to put on the calendar a good estimate of when I can and can't work for the next month or so. And I expect the pattern to be somewhat consistent till the end of the year; one full week out of every three with another couple of Mondays and Fridays thrown in on chemo/bone pain weeks. It is a three week cycle.
I can't believe how wonderful the Palace gang is about my not being there. It can't be easy for them to be down a person. Especially since part of my job was to man the fort in the afternoons so that Sonja and Mary Ellen don't have to be there all day every day. And I was the afternoon expert. I was in the loop and able to make decisions and answer questions independently. Now when I do work, I am not able to be johnny-on-the-spot as well as BC (before cancer). I just hope that if I am able to predict when I can be there, it will make it easier on them. There are a couple of guys that taught this summer in the workshops that Mary Ellen and Elizabeth have been orienting to take some of the shifts that we know I can't work. Of course I hope they do just well enough to make things easier on the staff and volunteers, but bad enough that when I am better in a few months, Sonja kicks them out and welcomes me back with a 'thank heavens you're back...' Ok. I don't mean that. Not really.
I haven't written that much about Jackson lately and I must remedy that. He is really getting to be a little boy. It is interesting to talk to him now and try to draw him into the two-year-old version of a conversation. On the way to work today I told him we were going to pick up some chicken strips for lunch. I used to tell him our plans when he was a baby too, but there is just something cool when the baby answers back with 'chicken good'. I suppose that will lose its shine when he starts saying 'but I don't wannntt chickennn, I wannt McDonald's'. But for now I like it. He often declares food 'good'. When he tries something new, tonight it was pineapple in my stirfry, he either spits it out or eats it and declares 'pineapple good, more pineapple peeezze.'
Each morning, Jackson has to chose his outfit for the day. You are not allowed to chose, he has to do it. I hold him up to the closet while he sifts through the shirts hanging there till he decides on one. He favors bright colors and decals of cars, trucks or building equipment. And fish. I generally get to choose the pants from the drawer. Or at least I pick a couple of things and say 'this one?' 'Nooooo' headshake headshake. 'How bout this one?' 'Ok'.
And shoes. Shoes must be chosen too, several times a day if while wearing one pair he spots another pair he'd like to wear instead. He loves shoes. Too big, or too small it doesn't matter. My mother-in-law, the bringer of all clothing items for Jackson, buys shoes whenever she sees a good deal. Often she gets pairs in bigger sizes for later. And this child has a lot of shoes, boots and sandals. Lots. The problem is that he doesn't care if the particular pair of navy blue sneakers was purchased for an older Jackson. He wants to wear them now. I tell him 'these shoes are too big for you' and he takes it to mean they are special somehow. He always reaches for this particular pair of at least two-sizes-too-large shoes with reverence and in a voice full of awe, he says 'shooze are biiiggg.' I have had to start putting the new, too-big shoes Susanne brings up in the top of his closet because he will insist on wearing them and clomp around the house tripping all over himself in his special 'biiggg shooooze' with no regard for his safety. He loves shoes.
Except for the ones that light up. You know how a lot of kids sneakers have lights on them that blink when they walk? Well Jackson will have nothing to do with shoes that light up. He doesn't even want them near him. They freak him out somehow, as if there were something unnatural and frightening about lights coming from your shoes on impact. I dunno. He has firm ideas on such things. Stuffed animals, toys that talk, and light up shoes are anathema to the boy. Gotta respect a kid who says 'I think that's weird and I'll have nothing to do with it.'
Jackson has also decided he doesn't much want to sit in his high chair anymore. We got out of the habit of using it when I got sick. Staying at my Mom's house or having help with him here at our house things were just different. Whoever fed him would feed him on the run or in the living room or whatnot. Things were chaotic. And though I can get him to sit there for lunch sometimes now, he has decided that he wants to sit at the table in a chair like the rest of us. Mom got out a few phone books for him to sit on and he seems pretty happy to sit at the table for dinner. David's folk use a high chair at their place that just rolls up to the table so I guess he got to like it there. Whatever the reason, we may need to invest in one of those little booster seats so I don't have to worry about him sliding off the phone books at the table. But I am ok with that. He is so cute sitting at the table like a little boy.
Um, what else? How about a baldness update? I am very nearly totally bald now. All the tiny hairs that remained from my buzz cut are falling out rapidly. I have had two showers today to get all the the spiky little hairs off my neck and shoulders. I will be glad when they are all gone and I don't look so patchy.
Of course there are the scalp sores. Yup, definitely another unfair indignity and blow to the memory of my former glorious head of hair. Hair all gone. Have head acne. Great. I googled around this morning trying to find out if other chemo patients have had this happen. I did find some articles that lead me to believe that Rituxan may have something to do with it. Called it a follicular rash. And the few pictures I saw of severe cases made me grateful to own my few sores instead. Severe cases involve the scalp and face and it was not pretty. So ugly that perhaps I don't really have this from a drug reaction, just a few irritated hair follicles. Either way, I now know how bad it could be and am happy it isn't. But still. Head sores? Come on.
But a head wrap or wig covers it up and I can ignore it for the most part. Heh, today at the drive through at Golden Chick, the young lady at the window gave me my order and said, "I really like your hair, ma'am." And with a slight movie star head shake I replied, "Why thank you." I had nice hair before - soft and shiny - but I have never had body. And boy does my wig have body. It is the envy of drive-thru-window gals everywhere.
Guess that is all for tonight. Oh, if you knew or knew of Jim Prior who left us this week, skip on over to his wife's blog and read the tribute Brandon Harris wrote to his teacher. Made me cry. Thanks to Jim for Brandon and the many other theatre students he mentored over the years. RIP.