Great Numbers and Some Musings

Treatment day.  Day 35 overall and Day 1 of Consolidation.

Payson’s numbers are terrific.  Docs are very happy with how he’s responded so far.  And we are totally experts at this now.  Like, these numbers are starting to mean something.  To someone.  Somewhere.  And a little bit to us.

He’s been knocked out two weeks in a row for some needle work in his spine.  The next two weeks he’ll be knocked out again for more needle work.  He’s also starting on a daily chemo pill.  He’s become an expert pill taker.  He only gags like four times per day.  Progress.

Consolidation will be a month long phase.  Doctors expect some of the swelling to go away and his energy to keep increasing throughout this phase.  Also, some of the shine may come off his scalp.  Right now it shines so bright that Miss Hanigan would even be satisfied.  And he’s got another member of the Bald Club!

But Why Is This So Freaking Hard?

Wendy and I have been talking about this, when we can find time in between our couples massages, guest lecturers, and passionate dates.  Like, why is this so hard? He could have been diagnosed with 100 things more immediately threatening. His own diagnosis could require so much more aggressive treatments.  We are so optimistic about the outcomes.  So why is this hard?

I think a couple things. First, up yours Leukemia.  Even on days like today, when treatments are working and energy is returning and doctors are happy, when Pace wakes up with a glimmer in his eye, when the weather is wonderful and summer is here – even on these days, you can’t celebrate.  Not too much.  You just can’t.  Because in three hours Pace could spike a fever and be in the hospital with something serious for a while. Or his next visit could go bad.  Or a medication in the next phase could give him the business pretty good.  Or Delayed Intensification in the fall could wipe him out. Or the crayons the server brings at Texas Roadhouse could make him sick. Or he could get a freaking kidney stone and his car could hit a perfectly innocent deer.

Cancer doesn’t let you celebrate, not right now, and not for a while.  You can be encouraged, you can feel relief, you can be at peace, but you can’t declare victory. It just sits there, Leukemia, with this arrogant grin and the only thing you can do, really, is beg for mercy.  So even though we talk about kicking this pig and up yours and all that, we know.  We know.

Side note: I’ve wondered why I feel like capitalizing Leukemia when I write.  Like it demands this respect or something.  Like I don’t want to piss it off again, so I capitalize it.

So, first hard thing – no celebrations.  Just relief and counting days.  But, wow, we have a long road ahead, and every single day brings something unexpected.

Anyway, the second hard thing, I think, is just the way he looks.  I mean, he’s got the twinkle, the sparkle still.  He’s everybody’s favorite kid other than their own kids.  He’s charming and full of so much love and humor. But it’s hard to see him look so sick. It’s just such a change. Little kids don’t look like this.  40 year old dads who can order fluently from McDonald’s without a menu and who eat their weight in Beto’s bean burritos on a monthly basis, they look like this.  They deserve it.  He doesn’t.

Somehow, the change in how he looks makes us love him even more. But, it’s hard. It’s a constant, unavoidable reminder of the situation.

The third hard thing is how defined this treatment is.  They know so much, they’ve learned so much, and we are so amazed and humbled by it.  But for every defined, down-to-the-day tiny piece of this treatment, for every pill and injection and port and numbing cream, it’s a reminder of the kids who have dealt with this before, who’ve struggled and fought and won and lost, and the kids around the world right this minute who aren’t as fortunate as Pace.  All of this progress has such a cost.  We always remember that cost.

So What Have We Learned, You Whiny Navel Gazer?

Three quotes by Viktor Frankl:

1. “When we are no longer able to change a situation – we are challenged to change ourselves.”

All of my life, I’ve seen adversity as something outside of me – circumstances thrust upon me, other people’s choices affecting me, bad luck. But really, adversity, most adversity, comes from within. Yes, there are things we define as “hard,” and things we define as “easy.”  There’s no way around that.  I’d rather spend the next eight months on Hanalei Bay then helping Payson and Wendy and Brigham and Walter and Maclayne and Isabelle in this journey.  But, absolutely and without question, I get to choose what this does for me. I can’t change this situation, so who will I become through it? I don’t like the short tempered, lazy, difficult guy this has sometimes revealed. That guy needs to go away, replaced by something better because he’s been refined because he’s chosen.

2. “Each man is questioned by life; and he can only answer to life by answering for his own life; to life he can only respond by being responsible.”

Cancer survivors have this thing, this zest, this focus that I’ve always admired. They live with purpose and with meaning, because they’ve had to consider what it’s like to not be able to live at all. They answer for their lives, because they’ve been given their lives. To answer for your own life, to me, means to be present.  Right now, this moment, this day, how can I be responsible? How can I answer best for my own life? I spend too much time in the past or in the future.  I spend too much time and energy and stress on a whole load of nonsense that matters not one tiny fragment of one bit. So, what about today? How is today going to be different for me than it would have been up until May 3, 2017? Will I ever say no when Payson wants to play again? Even if I’m really tired or I don’t feel well or the game is on? Jesus said it this way – “What will a man give in exchange for his soul?”

3. “The more one forgets himself – by giving himself to a cause to serve or another person to love – the more human he is.”

To all of you who have helped, who continue to help, thank you for being you, for forgetting yourselves, for being human. We’ve felt love and concern from people numbering into the thousands, literally.  Our families and our best friends and our good friends and our sort of friends and our acquaintances and total strangers and probably even some of our countless bitter enemies – all of these have shown up for us.  A person can’t serve unless there are people to be served. We are so humbled to be in the position of being served, but your sincerity and thoughtfulness is some of the only stuff keeping us from being drowned by this thing.

When this wheel turns and things are light and the weight and darkness of this thing is gone, we are soooooo gonna pay it forward. I hope, through all of this, that that’s who we are becoming.

OK, that got a little heavy. Probably time to go use the remote control fart machine I got for my 40th birthday.  Peace out.