I marvel at whether what my family experiences in my behavior is actually chemo affect or just me. I don’t know if there is a way to tell. It’s so easy to blame the chemo for the crap. (as IF I didn’t have crap before all of this)

As far as the general body stuff, you all know that the dryness is still the biggest thing for me.  My family benefits on occasion because I MAY just offer to moisten their dessicated epidermis before they shed like a snake.  One has to catch me at a very generous moment as I quickly get bored with the task of massaging others.  But when I do, you never know,  you might get a good long one out of me.  Rare, but possible.

My behavior is under the microscope at times. Perhaps those who love me are so sensitive to the changing tides, concerned for my well being, or whatever.  I don’t know how much of this behavior is genuinely me (I suspect 95%).  It is so great when I feel normal because life is normal and the “demons” as A puts it, are not in everyone’s face. It gives my kids and B no reason to consider me sick. On one hand, it’s great when I hound my kids about helping out or say no to something they’d prefer a yes to. It means I have enough energy to engage, so it feels great/normal for me, but not necessarily great for them of course.  That’s happening more and more of late, I’m feeling more active in the parenting role.  But I wonder some times if my clearly “affected” days eclipse the days when I am highly functional and normal.  You know the looks everyone gives each other when the pink elephant walks into the room?  I don’t want that to happen.  YUK.  But if they look at each other with “oh brother!” when I crack one of my jokes, or make a face or giggle when I probably shouldn’t…now that’s me. 

There are days when people say “I can’t believe you’re doing this” (like shoveling the 16 ” of snow we received last Saturday night with B who turns everything into a workout, or hiking the mountain in the snow on New Year’s Day, or going to work, or preparing food with energy and love, or staying up past 7:30pm). Observing me on these days may be confusing or concerning for some.  I don’t know.  Similarly, observing me cracking the whip with my kids (can you even IMAGINE that??) or getting irritated when I’m tired and should be in bed, could produce the whiplash I and others referred to in previous entries.  Perhaps when I’m doing or looking like something that is not pure G.O. it reminds them that I’m human like everyone else.  Darn it anyway.  As far as I can recall, I have always gone to bed early and gotten cranky when I was tired.

I vacillate between laughing about chemo brain space cadetism and defensiveness about the assumption that whatever I am doing/experiencing must be chemo affect.  I suspect that it will all come out in the wash and sometime next summer when I’m spazing out somewhere, dancing in the middle of a crowded sidewalk, singing a goofy song, we’ll all have a better view of me sans chemo.  I will have NO alibi and for that matter, neither will anyone who is seen with me.

Today is Sunday.  I  stayed home yesterday like a good girl, but I was busy as usual.   Today I also stayed home.  As B was leaving to pick E up from a friend’s house to take him to jujitsu, I mentioned a book that A told me I had to read before the end of January when it was due back at the library.  B said “Why don’t you just read the book?  You were all busy yesterday and crashed last night.  Why don’t you really just sit and read this morning?”  He walked out into the cold morning and A was soundly sleeping.  I started by doing my favorite thing, I made tea and got the fires rolling.   I sat in the chair and I provided a lap for our girlie cat who is JUST learning after 3 years that we are more than just can openers, and read the book.   The whole book.   Actually B and E arrived back home literally as I was on the last page.  A came downstairs just a short while after this.  It was lunch time and I hadn’t raised a hand doing chores or finishing the paint job on the window in our bedroom.

This is pertinent here for several reasons.  The first is clearly on the subject of is it me or is it chemo?  This could not have happened on the AC chemo combination.  I could’t read two pages at one sitting.  In fact before chemo it was a rare thing to read 200 pages in a day.  The next reason has to do with living with teenagers.  The book is among one of the best coming of age books I’ve read.  It’s called the perks of being a wallflower by stephen chbosky (1999).  As we are dealing with my medical business, our children are dealing with adolescence.  What a bum rap for them.  They have managed really well in my opinion, but it’s got to suck at times.

 Both are maintaining their position on the high honor roll, both are involved in some activities, both are kind to others and seem to be making choices that would make a parent happy.  I have asked them both to consider writing about their experience here, and hope at some point that you will have the fortune of learning from them.  Those of you who have read through the whole blog have seen some entries from E already.   For now, I’ll just say that parenting during treatments is a complicated thing.  I never want to be a burden on anyone, especially my children.  It’s hard to see a parent vulnerable, and they have been through about 5 months of it so far.  I’m so happy to say that at this point the most vulnerable they see me now is tired and bald (well, fuzzy)…so far anyway.  Earlier was tougher on all of us.

I’m grateful to A for recommending the book.  It reminded me of my own coming of age, and I got a vision of A’s possible journey through several of the characters.  I feel that when I told her that I took the time to read the whole book this morning,  for the first time in a while she may have felt like she was my priority and this diversion we’ve been on was not completely monopolizing me and my time. 

“It” was me today.  As I prepare for tomorrow’s “invasion” number whatever, as I am noticing what may possibly be cumulative fatigue, some subtle gut stuff and really tight shoulder/neck muscles, as I hang out with the best katz in the world and invite B for a dance by the fire, as I look at E’s latest math paper and talk with A about her favorite characters in the book, I am feeling mostly like me.  I am staying as in the moment as I can get.  The crackle of the fire, the purrrrrrrs from the katz, the I love yous from my family, the continued support from people who really care about me.  All of this is what will help me shine through as the chemo does its job and ultimately leaves my body.