This Thief, This Deceiver

After I posted that passage from Exodus 17 the other day Chandler tagged the actual Hebrew text - it definitely carries more authority in that ancient Hebrew script. As Molly Ivins once said referring to Pat Buchanan's culture-war speech at the 1992 Republican Convention, "It sounded better in the original German." Well Exodus 17 looks better in the original Hebrew.

C started getting the irinotecan yesterday. They give you an info sheet as the drug drifts down out of the IV, if you're wondering how it works:



It's not exactly the vivid, Old Testament version I'd been thinking of, but injuring the cancer cells and causing their death will do.

I tagged the chemo bag that they sent up from the pharmacy. Some of the drugs must be light-sensitive because they keep them safe in these smoky bags.



Irino day one was in this room - we got shuffled over to 3A, the pediatric side, since there was no space over in 3C. We were in one of the rooms with the curtained-off sections and the "plasma TV", so we caught some of the World Cup.

In the background is the machine that doles out the drugs - the medication drips out of the bag into a small recepticle, then it comes down the tube to the machine, inside the machine the tube is constricted and some mechanical device delivers the prescribed amount and speed down through another tube that enters the port and then on into a tube inside C's chest that wends it's way down near the heart. That machine ticks away, you can watch tiny bubbles working their way through the tube, step, step step right into his chest (which the nurses keep telling us is fine).

Part of the infusion process is C first gets a dose of ativan, popped under his tongue. It relaxes him and also helps with nausea. Hard to tell how much the anti-nausea drugs help when you barf anyway. I guess it could be worse? But each time within a few minutes of taking the ativan C drifts off.

The woman on the other side of the curtain sounded like she was in a rough place. Some family came in at some point, all of them older and none of them in great health. All I heard her say was, "I'm just so tired." They left and she ended up in the bathroom. After a while the nurse knocked gently on the door to make sure she was OK, she said she was, and the nurse moved on.

I took a call from the director I'm working with since there was little for me to do. I told him I wouldn't talk much since I was in the clinic, but I'd listen. As I sat there going over Tron notes I heard a child in the next room screaming. Coming in painful waves, dropping down to a sob and then peaking in full-throated wails of horror and rage. His anguish eventually subsided, and in a few minutes I saw his mother wheel him by, her head down, one foot in front of the other, he with his bald head up looking straight ahead, wearing the ubiquitous mask of the immunity deprived. Just a child. Sometimes these halls seem like life is poured through a strainer and the suffering and misfortune is trapped here.

The next day we're back for day two of five. C is steady but it clearly takes a toll. And there are three more days of this, the fatigue stretching for a week or so afterward. I wish we lived closer to each other so I could drop by and see he was getting enough to eat, bring him a snack, make sure he's comfortable. I know how it feels to be wiped out - you let things slide. That uncertainty worries me - all of these uncertainties worry me.

Today's room is smaller, a small examination room, enough space for a chair for me, a gurney for him and the drug-doling machine. I'll have to find out what those are called - they are the constant in this odd world.

I work on a crossword while the ativan takes him away. The machine in the background clicks along, sending troops into battle.  This will take an hour or so.  I finish the crossword, nothing to do, so I tag the machine.  100mg of irino slide in drip by drip.

I know we are at the beginning.  You walk these halls and you're faced with various possibilities of the future.  I know C's road here is a long one - a year.  It will get worse, and it will be tough.  He will suffer, even in the best possible outcome, the one we set our course toward.  I see it beginning, and through the haze of logistics which occupy my mind, like an anesthetic, the knowledge resurfaces sometimes that this is bad.  That way people not living with cancer think about cancer?  That's not where I spend my day.  I think about appointments, schedules, practical stuff, not the drama and anger and sadness.  Not now.  There is still the full joy of friendship and brotherhood.  There is still victory.  There are still all the things not taken away.

I remember this passage from a poem our friend Gus wrote when he learned that David has Parkinson's - another dose of misfortune we're facing - that news that alters everything:

"What was to become of us?
Something lost - something taken
This thief, this deceiver now between us
I cannot bear it - is everything from now on to be labeled with it?
Every gift, every call, all friendship, every fine thing,
Was it all suddenly to be only because of this - all love now sympathy?"

Not now. Not yet. Not ever, if there's anything we can do about it.