Life like a pew

We're back.

Early.

The short version is that everything's fine, with a dash of not-fine to spice things up.

OK, back up.

Far too much happened for my long-winded ass to re-tell it all without everyone reading to have stabbed themselves in the eyes before I get to day three, so here follows forthwith a seriously encapsulated version, with a focus on leukemia-related happenings:

We flew into LA, got a cab to our friend John's place. He's doing a play so was not there, but arrived eventually. I'd tell you where we found the key, but then someone might steal his Cleveland Browns memorabilia--not sure why, but they might.

The next day we exercised. N and John went for a hike in the hills above his neighborhood, and I was dropped off on a corner to run down to and through Griffith Park.

John's a lovely man, but he currently holds the world record in not-getting-out-of-the-house. It once took him three days to get out to his car for a trip to the Dry Cleaners. OK, that's an exaggeration. It took him six hours.

Somewhere in the back of my head I knew they would probably not pick me up at approximately 7 miles, as we had discussed. But I'm a macho dipshit and so just figured I would keep on running.

Gorgeous LA day. Hottest day in a while. 88 or so. Dry. Brilliant sun.

The Griffith Park Equestrian Trail is a good metaphor for LA in a lot of ways. Shaded, soft earth, beautiful winding trail along the bottom perimeter of the Park...

...and seven feet from one of the most clogged and exhaust-hurling highways in the United States of America.

So I ran that, and then got onto the regular road on the Valley-side of the Park. Which runs by two graveyards.

Except it's LA, so they aren't graveyards. Each is a "Memorial Park and Mortuary." I bet the tenants aren't dead. They're just on hiatus.

I ran past them. Then ran to Barham Blvd. Took a left, ran up a stupid steep hill. Ran across the 101 (on an overpass: I'm not that foolish) and up a little and then down through the Cahuenga pass. Then over the 101 again (again: overpass) and down to Franklin, where I took a left and ran past Gower and had made it just past the Scientology Celebrity Center (so many cult and idiot and only-in-LA jokes here I'm just gonna leave it) when N and John caught me.

11.34 miles.

Felt great, and to their credit N and John had texted me repeatedly with sage quips like "Stop running!" and "Wait there. On our way." It was all me: I could have stopped in the shade, dug the just-in-case bills out of the zip pocket in my shorts, bought a water, and waited. But I didn't.

Shocker.

The next day N gave a reading at a bookstore in Echo Park, which rivals New York's Williamsburg for being filled with morons parading around, throwing their hipness and chicness out like solar flares from a dying sun. Mopeds, pork-pie hats, chain-wallets on men who couldn't beat up a sparrow with emphysema. It was all there.

But a great crew of out-of-neighborhooders filled the back patio of the store for her reading: family, friends, colleagues, and strangers. A great afternoon.

The next morning I went to get bled at Quest Diagnostics, the 7-11 of blood labs: national, abundant, and a little skeezy.

The right arm poke was a failure, but not for lack of trying. The no-sissies-here full size needle was dug and twisted under my skin, searching for the vein. Then the other arm was optioned, and--likely scared by the excavation of it's partner--up filled the vial.

The Drs had put STAT on the form so that it could be returned and faxed quickly to NY, where it was three hours later.

Or not. It took until the next morning to get results. But I was in good shape, numbers up and going according to plan.

The next day I had a bit of a scratchy throat, and we drove to Santa Cruz in a rented Ford Focus. The car had a renter's governor and therefore only went 80. And whenever you got above 75 it went "Ping!" And when you hit 80 it went "Ping!" And when you slowed down and got near 75 again it went "Ping!"

Luckily, with the iPod high enough, you only heard some of them.

In Santa Cruz we enjoyed a very diverse, pleasantly odd, and lovely Seder with step-family and their friends. And N spoke to a class at the University the next day, after we visited with our step-grandmother-in-law, who we hadn't seen in a while.

Then up the state a bit more to Mill Valley, where N charged into the embrace of her recently-moved friend--a friend who has been wonderful even from afar at helping N through the weight-lifting and war-mentality my illness has thrust upon her.

And I got sick. Totally my fault; some bug I probably would not have even noticed crawled into the gaping hole created by 11.34 miles in a climate twice as hot and dry as the one I've been living in, followed by three or four hundred miles of driving and crossing into a cooler and wetter climate again, and I got me a nice sinus infection.

A call back East got me a Z-Pack, which is a powered-up five-day antibiotic. By the time we picked it up from a Mill Valley CVS I was shivering and weak. Freezing my ass of in the sunny 60-degree day.

N got to enjoy her friend, as did I. We went to college with her and her husband, and getting to know their kids and see their west-coast life was fantastic. But I spent a good bit of the days there in bed, recovering and letting the Z-Pack beat the sick out of me before it took hold.

And we changed our plans. Within a couple days it was clear I'd be OK--that it was an infection but that it treated me like a normal carcass and didn't bring on anything worse. But still, better safe than sorry.

The return flight we got was for a few days earlier than our original flight, and just after we would complete most of the things we wanted to: see friends, family, book stuff, and fun. So we cut the end of the trip short. I would do the audio-book from New York, and we'd be back close to the hospital sooner.

A compromise? No, a defeat. But that's OK. It was a battle we lost, and not the war. Being sick has improved my capacity for the long view.

When you're not sure how long, it changes the value, you know.?

I missed a union meeting and catching up with a friend and colleague in San Francisco. I missed seeing one of my step-brother's shows. N missed catching up with a few old friends. And that sucks.

Things suck sometimes. You deal with it. You take your Z-Pack, and you keep going.

We drove south to LA a couple days later. But only long enough to return the Ping! and borrow John's Prius and drive back north a bit to Santa Barbara to spend Easter with my step-mother and step-brother and his family. A great, easy visit with family, some extraordinarily therapeutic scratching behind the ears of their poodle, and a filling up of certain tanks that had been emptied by the isolation of the past year. We have had family and friends nearby, and they were and are all wonderful, but the sense that you are tied by fear and necessity to a place can drain you. Drains you. Feeling a little more free is a refill.

The following morning I got my next blood draw at a Quest in Santa Barbara. They stabbed at both arms again, and failed on the right again, and the lab tech told me to just give up on it. Too much scar tissue, too many stabs, too many needles. Just offer up the left now, don't waste your time. Don't suffer for no reason.

The right will heal up, hopefully, become pliable again, someday. But not for now. I am thankful that it held up this long, gave of itself to help me get better. This is my blood. Take it.

Then we went to visit my father's grave, overlooking the sea just south of Santa Barbara. Half of his ashes are next to my brother in Baltimore, and half are here, where his wife will rest with him in the hopefully many years from now when she rings the bell and steps out. We walked from his grave and watched dolphins rising and falling as they swam up the coast. The sea will eat the bluffs on which he rests one day. But not yet.

N had caught my sinus infection, so it was her turn to stay in bed. I managed to swap my ticket forward and see John's play, and when N felt a bit better we caught up with another set of cousins and kids back in LA. Full days, roaring through leisure, trying to get as much in as possible.

Which brings us to the above photo. I'm in the foreground--riding unsafely by taking a picture at speed (but just for a second). And in the background...that's N.

Years ago John and I went to the desert to take a day of off-road training, and it was brutal and phenomenal. And ever since we put this trip on the books, I've been looking at a day in the desert as a symbol, a middle finger shoved ardently in the face of leukemia. Dust, bouncing, sand, heat, sun, and the happy possibility of shattering your collarbone: none of that reeks of leukemia to me. How 'bout you?

Our last day in LA was the day we had scheduled in the desert. We managed to squeeze it in. We rode all day, and this time N and John's girlfriend were out there with us, scratching their tread marks in the dry lake bed along with us.

OK, neither one became an immediate hard-core moto-head. But they had a good day. We all had a good day.

Which was important, because we barely had time for a quick pizza and then hauled our bags and our tired asses--N still battling the sinus infection that had latched onto her about a day after it did me--and flew back to New York on the red-eye. Nothing like riding through desert scrub and on the cracked and baked floor of a prehistoric lake, and then sleeping in a seated position for three to four hours as the air pressure plays havoc with your sinuses.

That doesn't sound much like leukemia, either, huh?

I went to a Quaker school, and I was raised as secular as a minister's son can raise a boy. The times I've sat on the wooden benches of a house of worship, it has been in a Quaker meeting. Where truth rests in silence, and where there's no pulpit, no didact, no hierarchy.

God is a ghost story, but a quiet room and a moment to reflect; those are precious, no matter what you believe.

Life is like a pew. Even with a bit of a cushion, it's hard. Rigid. Unforgiving. Designed to make you pay attention, to punish you for losing focus.

But that's the seat we're offered. So sit the hell down. Find your center. Think your thoughts. Then rise, and keep going.

I'm Leaving on a Jet Plane -John Denver

Oh babe I'm psyched to go.

It has been a while, and no gnus is still good gnus. I've been running, biking, swimming, TRX-ing, eating, sleeping, crapping (c'mon; it's a valuable indicator), and working, among many other things I fervently wish to some day once again take for granted.

But this is still each morning:

Wake up.
Am I alive? Check.
Breathing? Check
Feel basically normal? Check.
OK, let's trying sitting up, shall we?
Head rush? Nope.
Dizziness? Strange aches? Neuropathy? Nope.
OK, let's head to the living room. Are there Froot Loops?

The am-I-dead? checklist slowly fades over the next couple hours, usually, but pops in like an unannounced grandparent every once in a while during the day: at the top of a flight of stairs (heart gonna explode? Nope), after a gorgeous and weighty styrofoam box of street-meat (will that four pounds of lamb-gyro-platter-yellow-rice-white-sauce calcify or inflate my pancreas?...Nope), etc etc.

My numbers did not plummet after starting the chemo again. Nor did they elevate. So I am still on the 6MP every other day, and have added the half-dose Methotrexate (7 pills one week, eight the next) back into the schedule.

Wednesday I felt a little crappy; and the world stopped spinning.

The Methotrexate roils the guts, and hits in a kind of small swoon of unpleasantness over the course of a day or day and a half. Then it passes. Usually. And it is all bearable. Usually.

Tuesday I was running and felt a little cramp-y twinge-y discomfort. Nowhere near far enough from any of this to not immediately think in at least one quadrant of my head that my liver was about to shear from its moorings and rifle out of my body like a rotting plum shot from a cannon, I tried to remain calm. Slowed down. Ran through it.

And it passed. And I felt fine and did 7 miles total that day. Good stuff.

Wednesday I felt a little less good, so took the day off exercise. And stayed feeling just the slightest bit not good for the day. Reining in terror, muffling hurled self-diagnoses, breathing deep: in through the nose and out through the mouth. Trying not to have everything else in our lives blanked out by worry, by the sink-stomached sense of preparation for a hospital trip, or bad news, or anything.

And around 4 I started to feel better. Got my appetite back, at a late lunch bigger than my wife, and by 8 felt 'normal' again, and had trouble getting to sleep because whatever energy had partially abandoned me during the day roared back and I would have stayed up all night on the computer if N had not admonished me not to.

So it was nothing. Well, not nothing because everything is something, and of course there's the off chance that four days from now my neck will fall off or my capillaries will self-shred or something, and as I fade from existence some placid-faced medico will lean over me and say "you didn't happen to have stitch in your side four or five days ago, did you? Hmmmmm. I see...Oh1 Look, he's an organ donor. Daniel, get in here! I've found the vas deferans we've been looking for!"

But I have to wrench myself, and N has to wrench herself, away from the worry end of that. It was nothing. I'm 'normal' now enough to maybe have caught a little bug, fought it off, and moved on. Or I had some bad shrimp. or Whatever.

Sigh.

We were in Baltimore last week. N was a visiting scholar at my high school, and she was miraculous. Teachers who were on panels that agreed to suspend me when I was a student, teachers who opened their intros of her with "...she's here because she's married to a Friends School alum, though my first question to her was 'what were you thinking marrying that guy?'" now watched, rapt, as she connected with kids from grades eight to twelve, told her story, teased their stories out of them, had other teachers and administrators taking her writing exercises, scribbling furiously to find a sliver of truth in their lives and work that might resemble the slivers she assembled into her book. And they did it; great beautiful pieces of lives landed on paper, were read to each other, created moments when young men stopped snarling and twitching and just looked up and out, eyes clear, unabashed by their feelings, and young women pushed past hair-flips and peer-fear to lay out a line, a truth, a sadness, a ferocious courage, on a page. 'Proud' does not have enough letters to be a word big enough for what I felt.

And we were in town to collaborate in a surprise 40th for my oldest friend. I actually had to fake taking a dump at one point to keep him in his house long enough for the group to assemble and prep at the bar around the corner. Not that he was in the john with me--which would have made faking a dump a much more acting-intensive event--but he wanted to leave early so I had to stall. But it got pulled off, and I think he was really touched. He slowed down when he entered the bar and this varied and thrown-together mob of what a human's life looks like in the faces of those we draw to us starting yelling Happy Birthday to him. He slowed for a second, almost stopped, then picked up the pace and went into the collegiality. I was behind him so couldn't see his face, but he's got 'stoic' pretty nailed anyway, so that wouldn't have been much help. But I think that slowing down was a moment of being surprised, and maybe a little overwhelmed, in a good way. Awash in the good cheer of one's circle. Good stuff.

And in an hour a Town Car will trundle N and I to Newark International Airport, where we will board a plane and go to California for two weeks. N has book tour events, visiting-scholar gigs, and some deeply missed friends to hug once again. I have some union people to check in with, at least one audiobook to narrate, and friends and family up and down the shuddering fault lines of the Golden State to visit, show I am not dead, hug, barrage with endless talking and jokes.

You know: a trip.

It will be the first time since diagnosis that I have been more than 207 miles (Baltimore) from New York Presbyterian Hospital.

The City-State recedes.

I have to get bled by some random lab tech on Monday, and the Monday after that.
Fax the results to NY, talk to my Drs. Hopefully continue on because everything's fine.
Maybe get back east as fast as we can because everything's not.

On a jet plane. The first time since diagnosis.

Which was one year ago. Exactly. Today.

Three hundred sixty-five days ago I became a patient. My, our, focus shifted irrevocably onto a single glowing hate-seed of disease and shattering uncertainty.

Nothing will ever be the same.

Three hundred sixty-five days ago, Tax Day 2010, in an act of betrayal for which I know myself well enough to be sure I will never be fully able to forgive it, my own body, my own fucking cells, the ninth and eleventh stalk-ends of my own fucking genes, turned against me, slapped my focus, owned my ears like a dog-whistle.

Stole me.

Instead of returning to a musty apartment in May, we're returning to a corkscrew to the pelvis, a syringe of Vincristine, and a handful of steroids.

Wah wah wah. Life's a bitch. Quit pissing and moaning, you friggin' sissy.

Shit happens. And then more shit happens. Now finish packing; the car's coming.

It's gonna be a great trip. I was scowling writing that last bit above. Then I stopped. Just started to think about traveling, seeing family, friends, somewhere else.

And I started to smile a little.

OK, Gotta go.

Victim to the breeze

This photo isn't all that interesting. And neither am I.

God, that's nice.

If you are a knock-on-wood type, get going, because I am about to bullhorn the jinx-spirits with extreme prejudice:

I think things are going well. I think it's gonna be OK.

Now we'll pause for a second to see if a tractor-trailer swerves off the West Side Highway and somehow flies three blocks over and three stories up to smash through the walls of our building and kill me...

Or we'll wait and see if all the radioactive bits in the air that poured from the Daichi nuclear power plant in Japan will re-form into one super-glowing fist-orb of gamma death and spear through the atmosphere, city, streets, walls, and air directly into the base of my neck, instantly melting me onto my chair as either a globule or a stain (depending on whose Spinal Tap drummer-death version you prefer)...

...

OK. I guess I'm OK for a minute or two.

In a few good films--and a lot more crappy ones--there is a "Spilled Sheaf of Papers" moment. In general, this is a moment when a character in a film, overburdened by a large stack of paperwork--often extremely valuable to the character's continuing states of happiness and/or employment--either stumbles or is caught by the wind, sending immediately and irretrievably mixed pieces of paper flying into the air, across the plaza of an office complex, or (in films where the filmmaker really doesn't care about the American audience's need for tidiness in storytelling) into a rain-soaked gutter.

There are basically three reasons for a Spilled Sheaf of Papers moment:
1-Show a protagonist at the end of his or her rope, shattered by life, thrown to the wind.
2-Give an excuse for an attractive person to come to the protagonist's aid, usually leading within minutes to an 'abstract' shot of hands clutching their fingers together on rumpled sheets because American movies rarely show actor's pretending to orgasm--or if they do, it is embarrassingly bad. [Note: Steve Railsback and Barbara Hershey share a really good, elegant actor-gasm in "The Stunt Man," a film everybody should see].
3-Show how fragile everything is: puff! and it's all gone.

The most recent one I can think of is from "Ghost Writer," the Polanski film where Ewan MacGregor tails Pierce Brosnan while trying to figure out a lot of stuff. The last image is a sheaf of papers blowing down a street. I think it was meant to show Reason 3, but there was a touch of Reason 1 in there, too.

I'm not the protagonist in this barely-held-together parallel I'm drawing. I'm the papers.

And it is kind of nice.

Health update:
Swallowed the fourth 6MP of this attempt at Maintenance today. Every other day, 50mgs. I feel it a little: fatigue, some stiffness in my joints, etc. But just barely. And I rode a bike 23 miles or so yesterday, so there could be other reasons for those symptoms.

As you can see above, my hair has come back. I shaved my face yesterday, and the hair on my skull is oddly baby-soft, which goo-goos my macho a little, but what are you gonna do?

My most recent blood work was good; numbers higher, nothing seemingly out of place, thrush gone from my mouth.

I didn't seem to have the prednisone crash, which N and I feared quite a bit. I came off the Vincristine, then came off the Pred, and I felt tired from having been up and buzzing on 'roids for five days, but nothing psychological, nothing deeper than expected. Nothing even remotely like the horrors and weeping and lost-soul-in-a-blender of last time. Just a groggy morning or two and then back to whatever normal is this month.

N was in Houston for the past few days, teaching and reading and speaking and visiting a dear friend. And I did not die or crash or melt or unknowingly fart my duodenum into my undies while she was gone. Another brick in the wall of thinking we're doing OK, making progress.

Tomorrow we go back for blood work again, and I will take a half-dose (only 7 of the friggin little pills) of Methotrexate.

The Drs are still being conservative, and I am thankful, and I am curious. I think they still feel that the Maintenance dosages in their books/experience/habit will be the right ones, but I was not healthy enough and/or other factors screwed it up. So they will slowly and conservatively edge the doses back up until I get to a sustained maintenance level: 3.5 white blood count and 150 platelet count, or thereabouts.

I think my 6mp sensitivity is very real and will mean that I reach those numbers at lower doses. But I'm not certain, any more than they are. And I have grown stronger in many other ways during this no-or-less chemo time, so maybe I can take their doses now.

It'll be interesting. We'll see.

It is nice to think that, without any attendant terror. Because they'll stop when my levels are 'right.' Not when their doses are 'right.' We're confident of that. Which is very good.

This week I only managed 8 total miles of running. But I swam, and I rode, and I did some TRX, and I had a week of auditions and unionism and work that felt very like what my body remembers as a 'normal week' from before diagnosis. I was a little beat today, but beat from effort. From living; not from not-dying: those distinctions are tiny, but very powerful. Like fleas, or May Lou Retton.

Biking yesterday, I passed over a section of new path that was installed along the Hudson after my diagnosis. It is too far north for any of my runs outside so far to have gotten me there. Friends and teammates who run had mentioned it, reported on it. I saw it from a car window a couple times. I yearned, I pined. I probably whined.

Yesterday, I rode up it, rode under the GW bridge, rode up the hill and went to the Cloisters, and turned around and rode back, passing over the new section again.

Smiling ear to ear, even as I cursed the headwind and tried to stay in an aerodynamic riding position. Ear to ear to be back out there.

For the first time in a while, I am the sheaf of papers, and not the protagonist. I'm just part of the scenery, blown around, maybe rained on, maybe picked up by attractive people who will sort me back into my correct order, and then leave me on the credenza while they lock lips and disrobe on their way down the hall and around the corner toward the bedroom--careful to lay out flagstones of clothing for the camera to follow later during the 'nudge nudge wink wink look where they ended up!' tracking shot.

As a performer, of course, being part of the scenery is completely anathema, horrid, humiliating, and shitty. I have already caught myself bemoaning the loss of drama that used to follow me into a room; when nobody was sure if I was gonna make it, gonna make it back or not, gonna pass out in their office because they didn't usually converse with people that particular shade of see-through.

I'm human, flawed, and sometimes pathetic.

Almost, at times, the Fool.

I still have my foibles jauntily hung around my neck like Mardis Gras beads on a topless drunk chick. And so, for moments at a time, I miss the excitement of everyone turning when I shuffle into a room because, fer fuck's sake, that guy's got CANCER!! Or the sound of spines snapping as people bend over backwards to accommodate the fourteen minutes I can spend in the real world before partially decomposing and going back to my flopped existence.

And I am not pretending for a hot second that we're anywhere near done with this. Maintenance has not been figured out, I've got two full-blown Hyper CVAD poison-chugging parties coming at me in August and February. I could relapse. I could step on a nail while my counts are down. I could take Methotrexate tomorrow and have it disrupt my innards like logic disrupts the Palin household.

But, this past week or so, in terms of my health, things have been...regular. Normal, even. Hell, I think some of it has been forgettable, but I can't remember for sure.

And while the performing bear weeps at the silence where applause should be, the rest of me has been smiling.

Ear to friggin ear.