My life as a spoiled toddler

The amazing Barbara McClintock's "Fairy Bread"
from A Child's Garden of Verses

It's been a while, hasn't it? 

I'm happy to say it's not because I'm doing terribly. I'd like to say it's because of I've just been too busy being fabulous to take the time to post, but that's not really it either.  Mostly, I've haven't been blogging because I've been mentally acting like a spoiled toddler going all, "I can't hear you, I can't hear you, I can't hear you!" to my cancer.  For a long while there, I just didn't want to deal with dealing with it.

Real mature of me, right?

It started in May.  I had my usual appointment and got my tumor marker numbers.  I'd been really, really hoping they would be continue their downward path right on down into "normal" range, finally.

They weren't.

They weren't bad, less than 1 point up, from 47.5 to 48.3, so stable, and I know I was damn lucky to have that, but, like a spoiled toddler, it really ticked me off not to get my way.

In June, they were a little lower, 45.1, so again essentially stable with a twist of "lower" but my white blood cells were just on the edge of "trouble" and I still wasn't into the normal range, so my funk continued.

It's kind of weird, I know, especially looking at where the number were.  I should be dancing in the streets to remain decently stable.  I think, really, it's just that I've been fighting this stupid thing non-stop for years, now, and I just wanted a break.  I really wanted Xeloda to shove me right smack dab into "no evidence of disease" territory and let me stop worrying for a little while.

And, yes, I know "stop worrying" wouldn't really happen because cancer is never going away even if it's not detectable and every single day is an opportunity for the cancer to outsmart the current drug and come storming back, etc, etc.  But the dream was so strong.  And so beautifully tempting.

It's hard, sometimes, to know I'll never get that.

And so, here we are today.  Another oncology visit last Thursday, waiting for more tumor markers to see how things are.  They may even be lower, they hopefully will be stable, and no matter what they are, it's been a good month and I feel good, so there's always that.  But still, the uncertainty.

Added to the uncertainty, my neutrophils (you'll remember those suckers are the white blood cells that fight infection and my inability to keep enough of them while on Ibrance last year is what tanked that drug for me), which had been trending down slowly but surely over the past many months, are now officially below 1.00 so I'm ordered off of Xeloda for an extra week to give them a chance to regroup.  No one really knows if the week off will make any difference in the cancer fighting.  I guess it doesn't even matter since the risk of infection is such that there isn't really any choice but to take a break, but still.

Yet, in the meantime, life has been pretty normal.  I get tired, I get painful feet and hands, I have trouble sleeping sometimes, but I also go to work, spend time with my family, grow my summer garden, and I just got back from a dream vacation with my daughter in Spain (so that was awesome!).

It's hard to live with the uncertainty, never knowing what's going to happen from one month to the next.  I would like nothing better than to "get through this" or "lick this thing," and some days it's all I can do to stay in the moment and not let fear creep into my enjoyment of the day (although, I'll admit, Spain was pretty distracting and so many great moments to enjoy).

I tell myself to trust God, I tell myself to be not afraid.  But sometimes it gets the better of me anyway.  And sometimes I'm just tired plain tired of dealing with it.

But I think, for now, I'm mostly over being a spoiled toddler. And I'm definitely going to try and be a better blogger.

Thank you for having some patience with me while I go through the ups and downs.  More news on tumor markers hopefully coming soon.