Monday, May 19, 2008

A New Normal

A few weeks ago whilst visiting, my uncle used the term "a new normal" to describe life when you have a serious disease. Life changes drastically, almost overnight, but then that change becomes the routine of your existence. You have to adjust, sometimes continuously, as this new normal takes over the day-to-day. So not only am I having to relearn parts of my old routine here at home with Little A, but also integrate my new practices like daily saline flushes of my Hickman line and psychotic hand washing . I'm also learning to become more flexible with my schedule and my notions about my own health.

Since being home, I've felt pretty good. I tire a lot quicker, and my allergies went into hyper-drive for a few days, but other than that I've been feeling moderately healthy. My blood work, on the other hand, tells a different story. I had a blood draw today, and my white counts have stayed the same since last week, hemoglobin is down a little, and platelets are down. The doc (known now as my Parole Officer) is concerned yet again at my slow rate of recovery. So he's moved up the bone marrow biopsy (Number five!) that was scheduled for Friday to Wednesday; the White Coat Folks need it to determine what the heck is going down in my marrow. Are the Oompa-Loompa's just on an extended smoke break and need to get back to work making my cells? Or have the Stupid Zombie Leukemia Cells reinfested? Only the biopsy will tell.

Either way, my furlough is going to be cut short for another stint in The Big House. I'll be getting more chemo, but what kind depends on the results of the biopsy. So I'm looking at another couple of weeks behind bars. And sooner than I anticipated. Apparently I misheard my doctor and thought his "three weeks" meant three weeks from this week. Nope. He meant three weeks from my initial release from the hospital. Dammit.

All this schedule shifting means child care plans have all been thrown higgedly-piggedly. I now have to find someone to watch Little A and someone to give me a ride to and from the hospital (Since they give me the goofy juice for a biopsy, driving is not recommended.). Plus, someone needs to watch Little A while I make my triumphant return to Dancing With Chemo as my mother has to finish out the school year.

Watch as Manda beats her head against the wall.

On top of all this schedule shifting nonsense, I get the additional word that my genetics don't look promising. Apparently on one of my cell lines, I am missing a chromosome at chromosome 7. From what my Parole Officer tells me, this indicates a fairly aggressive form of leukemia (Sweet! Awesome!) which is generally treated with a bone marrow transplant (Rad!). And at that point, all I've got going for me is my youth and the grace of God to get me through to the other side.

Looks like when I wandered off the highway and my RV broke down in LeukemiaTown, I ended up in the slums with a pissed off Denis Leary hunting me down. I ain't got no map, and it's a long way to the border. And Cuba Gooding Jr.'s having a hysterionic fit.

Oh and today is my anniversary. Here's to eight great years! Best husband ever!


Anonymous said...

Hey Amanda,

Sorry to hear your stay at home is short-lived. If you need any help with Alastair, I'd be happy to help out. I'm sure Connor would enjoy having a boy to play with for a change!

You're in our prayers. We passed Massey last week and Paige said, "Is that the tower Miss Amanda is in?" Apparently zombie warrior imagery doesn't work for a 3 year-old, but princessy things never go out of style!


Manny said...

Missing a chromosome? We all know that they can just replace that with frog DNA and you'd be right as rain again. Although you might get the urge to rampage through town and devour tourists. Win-win?

prisco said...

Bah, nothing to worry about. You're being chased by the dude from House of Pain. And they haven't been doing much jumping around for a couple of years now.

JamieSmitten said...

I'd be happy to help with car rides to and from the hospital -- I've got that loop down pat!! Hang in there -- you can do this.

TK said...

Stupid missing chromosome. If I could give you mine, I would. Take care kiddo, and Happy Anniversary!

Ranylt said...

Hang in, Albie.

Oh, and if you're shopping for replacement chromosones for visualization techniques, I'd go with something hide-tough like rhino. Screw the tourists--arm yourself!

amy =) said...

i'm so sorry about the verdict, and the probable repeal of your parole. you have been and will continue to be in my prayers. the oompa-loompas just need a swift kick to the rear to get them back in line.

tinksgirl said...

I'm kicking the oompa-loompa's for you right now. Sorry about the bad news, try to hang in there and have faith, there are a lot of people praying for you.

Marissa said...

Hey girl, I want to know what your NYC special requests are. I'll be in town next week, and will be happy to bring you ANYTHING you want. I also don't have anything on my schedule after Monday, so let mw know if I can help with Alastair.

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