Making the most of it

(Written Monday, July 28)

I wanted a perfect ending.  Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end.  Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. 

~Gilda Radner

It’s 4:30; we’re sitting in Craig’s room waiting for Dr. Flaig.  Dad flew in yesterday after hearing of Craig’s pneumonia.  He had booked a flight for this coming Friday, but I called over the weekend asking him to come sooner.  We’ve been passing the time reading, discussing Christian Bale’s recent troubles (his mom used to be a circus dancer…when, if ever, is there dancing at the circus???) and talking with C, though he’s been pretty groggy.  He just got off the phone with Steve where he was the most emphatic I’ve heard him in a while.

The doctors broke the news earlier this morning that Sutent won’t be possible.  And with a gentle swoop, we’re left with neither a floor nor ceiling.  Despite reducing his TPN and cutting back on meds (includind chemo) Craig’s liver enzymes have worsened.   Though we had suspected this, it’s still heartbreaking to know we’ve come to the end -- our backs are finally against the wall.  One would expect an astonishing loss of form given the emotional trauma we’ve all endured this year.  Hearing the words “we’ve done all we could” so soon after mom is, needless to say, difficult.  But, we’re handling it as best we can.

This latest news hasn’t registered with C emotionally (as he says) because of all the drugs.  Still, he’s aware of what this means and is determined that we now focus on doing the things he wants to do, and on comfort care, namely managing his pain.  He's been complaining of new pain to the right of his sternum, and earlier, the doctor could hear something (maybe a tumor?) rubbing against his stomach wall.  Craig now wears a licoderm patch over the area, to help with the pain.   He’s been groaning a lot more in his sleep, and his breathing has grown shallower, forcing him to wear an oxygen mask. 

We’ve assumed our positions at his bedside (for the time being).  Sometimes, I’ll catch myself watching his chest just to make sure he’s breathing.  Just like with mom, we’re now ‘watching’ for signs of the near end.  Though Craig still has time ahead of him, it’s easy to fall back into old habits.  After all, it was only a month ago we had to do the same with mom.  I can remember so vividly the Saturday just before she passed.  She was still conscious and able to communicate, but starting to decline.  I remember watching her chest expand with each breath from my perch on the couch.  On a few occasions, she’d stir and open her eyes.  I’d quickly stand up to get in her line of view, and grab her hand to let her know I was there.  I’d whisper ‘hey mom’ as I did so many times before.  That night, she whispered back.  I remember falling asleep to her breathing, which was growing raspier by the hour. 

It’s hard not to draw parallels with C, or feel the same pressure on the chest when the time between breaths seems to drag on for ages.  But, Craig’s not mom.  He’s still with us and, for the most part, himself.  He’s been visiting with friends – two of his blues friends stopped by to visit – and we’ve been taking long strolls down the hall whenever he’s felt inspired.  His newfound energy has been applauded with “looking goods,” “hey motorboat,” and “look who’s out of bed” from his nurses and doctors.  He even made a few wisecracks reminiscent of his old sarcastic self.  Craig rarely smiles or laughs; to get a chuckle from him is like winning the lottery.  For the lucky person who cracks the code, it's instant respect, at least for the day.  

Jason Ricci said during the jam that Craig hasn’t let this get him down.  He hasn’t.  He’s getting on with the rest of his life, however long it may be.  Like I told C this morning, we’re in it for the long-haul.  We’re now moving forward with some of the plans we’ve had to put on hold for various reasons.  Depending on whether he's discharged, we hope to take him to the mountains this weekend, followed by some live music.  We’re going to do all we can to make sure his needs are met -- that’s the least we can do.  -- J