Saturday, October 30, 2010

How much does a big sky weigh?



Today is like holding up a big grey sky.

The chemo has been going OK, for all intents and purposes, but it is a lot of Cytoxan over a long period of time--3 hour hits with 9 hours in between over 60 hours. It just slowly gets into all the spaces where I hide and drags them down.

I have been walking my mile, N with me yesterday which was good for her tweaked leg, and I am not really worried about anything. These are all drugs I have had before, just in larger doses and/or over longer stretches.

And the timings have been, at least for me, unfortunate. The drug I feared the most, The Devil, has been put at the back of the list, so I have to go through this extremely long Cytoxan rally before they give me the heartbreaker.

Which means that, by the time they get the red syringe into the room, I will be run down, I will have eaten less, I will have lost weight--6 pounds so far--and I will psychologically be less prepared for carrying myself with the kind of strength and momentum with which I would rather meet the Devil.

And then they'll pop off a little Vincristine at the end. You know, just for fun.

My neighbor speaks French-Creole. Which was interesting at first; a nice New York-y taste of everywhere like you hear when you are the only English speaker in a subway car.

But now it is getting old, and now it is getting on my nerves. Not his fault, it is just that I cannot stop myself from hearing: I know enough Spanish and the tiniest bit of French that my ears reach out to his phone calls:

"Allo...oui. Si, tujours le mem cu sah marsh mais ploo je demine Beel Cleenton. Way way (Once the French know to whom they are speaking, 'Oui' becomes 'way.' Just happens) Way, waywayway. Et bon poor tout le monde parsk mais remulade crouton joie de vie..."

Three hours pass. He farts, rolls over, inches away. Watches, inexplicably, news he doesn't understand: why would you choose those visuals?

"Allo!?...oui. Non, di le Pepsi no doctour paypair. Chambre deux cinque cunque bey! Way; Bey. Eh? Bey! Bey!"

And now he has developed a morning ritual that veers so wildly from the horrid to the sweetly heartbreaking that I sort of can't stand it.

He wakes up hocking. Sneeze-coughing and rolling over in his bed quickly so that he can slide the trash can into range and spit into it. He does this for a while.

Then when that subsides he starts to sing very softly to himself. Little French songs. Not even singing, really just humming, breaking off to sigh, breaking off to spit, breaking off.

When he shuffles past with his urine bag--he is on a Foley and "there but for the grace of..."--and his morning toilette clutched in his hand, he nods once in our direction. And I know that my talking to N and the doctors must inhabit the same misty space his verbiage does for me. Teet for tat, as it were. No 'arme, no foul.

He has had visitors loud and soft, and the staff here have learned to come in when they see him get a visitor so that maybe they will not need to call for translation every time they need to talk to him.

He had an infection of sorts and was running a fever when we got here. I learned that 'frisson' meant chills a lot faster than our nurse did. Lying on the other side of a curtain from someone will do that. There are no atheists in foxholes. Except me. Well, secular humanist, anyway.

Anyway, there is little to report beyond that. When the death-threat of Peg A was removed and we were swapped to Hyper CVAD, I was led to believe that we would spend 4 days in the hospital approximately once a month, plus two one-day pops for Vincristine (because who can get enough of that little trollope, no?).

Turns out they sort of just made that up. If all had gone according to the original plan this time, we would be here until Monday morning. There are all these specific times after each chemo that they want to wait before the next chemo. So, six hours after the last Cytoxan before the Devil, and then however many hours after the Devil before the Vincristine, etc etc etc. Add all that to the 12-hour stretches for each Cytoxan to begin with and you are getting closer to a week than you are four days.

And I guess I just wasn't ready for that. The last bout with Hyper CVAD seemed to make so much sense: get it in you, get home, lie down, get through it. Two trips to the hospital per week to see where the numbers are, fixes if you need them, then back to bed, at home, with food that doesn't suck and blankets you've been under before. Just felt like a better healing environment.

I am getting less and less capable of eating here. I think that the time spent away has made me appreciate how absolutely awful the food here really is. One of the bright sides of this whole cancer ordeal may be that N will finally get me off the kick of wanting to take a cruise ship some day: I am fascinated by the 'floating city' aspect of it all, and have been pushing against her to 'sail' somewhere for years now. But, honestly, if this is what industrial feeding is like...fuck that. I'll watch discovery channel and make her pan-seared salmon over basmati rice with asparagus. And steak for me.

So we have chatted with the pharmacologist everyone here defers to, the smallest doctor with the widest swath, and she trimmed the wait times a bit and we should be out tomorrow. Still a day later than I had built in my head, but a day less than if we hadn't said anything. And I have such full trust in the tiny encyclopedia that I am not worried about pushing the wait times. She hasn't been wrong yet...except for that one decision to go with the Peg...but everyone gets a mulligan, right?

I am tired. Deep, internal tired; a tired that not only makes talking to people and focusing on tasks difficult, but makes thinking about talking to people and focusing on tasks difficult. I haven't stopped writing yet because stopping seems like something I will have to plan for, prepare for, then do. That's so much work.

There is a gnat or fruit fly hovering ever closer to the pineapple I have next to me that is about all I will eat from lunch (if you want a visual representation of unwanted loneliness, put about thirty cut string beans on a plate, without anything else, and put the plate under one of those warmer tops. When the eater lifts the top to see what awaits...sigh.)

The prospect of waving at that bug to keep it off the food seems exhausting.

So I'll eat the last piece of pineapple, and the little bastard can have the grapes.

Then I'll walk my mile. Goddammit, I'll walk my mile.

Goddammit, I'll walk my mile.

Thursday, October 28, 2010

Ennui as a direct result of trepidation

This was going to be called Running With the Devil, because of this photo,


Which I took of myself--texting while running still seems to be legal in New York--about 1 mile into the 1.8 or so I ran to start yesterday's chem-athlon. The intent was to run and pant and sweat for the days leading u to a battle with the Red Devil, a main ingredient in the 4-day stint we are now starting.

I ran from parking the vehicle at our garage back to the apartment--the aforementioned almost-2 miles. I briefly checked in on N, who was deservedly getting extra sleep after the incredible success of her Second annual Storylines Award, sponsored by the NCV Foundation--which is really just N's heart and drive and her Dad and I following in her wake doing our best to help make things happen.

From the apartment I went to the gym and did 5.7 miles on the bike in half an hour and then 20 laps in the pool in just shy of eleven minutes.

The day before I ran the full 2 but skipped the bike and just swam as I was needed back at the apartment to help Mom and Jim pack the Sam's Club food from the vehicle into our fridge--a task I arrived perfectly too late for, so that I could bemoan how much I had wanted to help without having to lift any trays of veggies or ginormous bottles of apples Juice.

The Award speaks for itself, or will when N gets this year's photos and info up on the site soon. Suffice to say it was phenomenal, and this year's author/judge, Naomi Shihab Nye, was a beam of pure light throughout the evening.

Alas, the Devil, while still quite the terror personally, has been put off to later in the weekend, and the battle waged against the chemo as been oddly, disconcertingly, um, mild.

This week has been a strange one. The past few weeks, to be honest. I have been battling on a couple fronts, internal and external.

From the inside comes the fact that the last round, the last 4-day blast, was not so bad, and so the last two weeks found me spiraling about without much to fight against, gaining weight--which is the correct thing to do but bruises my ego--and in general flailing a bit. The therapist brought it into nice focus by pointing out that as this progresses, unless I have a string of bad luck for the record books, my battles will get more and more 'quiet.'

A loud and violent battle makes sense to me. Pound my plowshares back into swords, as it were. Get nerved up for the spray of blood, the scissoring hooves of warhorse's feet, the stench of death on the battlefield.

That gets the blood going, creates a stage (theatrical analogy intended) for the coming difficulties and efforts to alleviate them.

So if things are going to be...fine, then I find I am quickly backsliding into who I was before.

Everybody says cancer changes you. And they mean 'after.' Obviously, making you dead changes you, but that isn't really what I am going for. I mean the 'after' of maintenance. The 'after' of cure, the 'after' of 'hey, remember when I had Leukemia? When that year was stolen from us?'

And, blood-doping-or-not, cancer-defeating champion or not, arrogant-or-not, I have always been and will always be drawn to Lance Armstrong's gift of cancer: the allowance to fully rebuild himself from the skeleton outwards. In his case make himself the best cyclist ever. In my case to put muscle where I want it and extra weight where I don't, with a specific eye on marathons and triathlons. And, lets' be honest, looking good for years and years.

But the psychological battle is, as I was told this Tuesday morning, quieter. And, I think for me, more difficult.

The White Zen pragmatism that has helped get me through a lot of the hardest times--the 'this is happening, so what do we do? OK, let's do that thing?'--serves better the wildly terrifying and the deeply urgent.

In talking it through with the therapist--and I think I am giving her more ink because she had greater success with me in therapist-ing: in talking or questioning enough to lead me to the conclusions so that they were already planted in my bones before we even discussed them--was an analogy of the 'battles vs. the quiet evolutions' as being like the strengths and weaknesses of Method acting.

So: brief history: Method acting was created by Stanislavsky, memorialized in his book 'The Actor Prepares,' and carried to a new world and audience by Michael Chekhov, nephew to the great Russian playwright. The Method is, at its most basic, a way to break down the components in a scene or character so that an actor can find personal truths to connect them to. A sad scene will be aided by the actor finding his or her own sadness and channeling it into the play's words in rehearsal. An actor who is supposed to have not slept for days before a scene might want to not sleep for days to truly understand that situation.

The part of the Method that most western actors forget is that A: it was designed for theatre, an B: it is supposed to disappear near the end of the rehearsal process. You go through this deconstruction, and you build your character and your scenes, and then you forget all of that process because it is in your body and you go out on stage and you knock'em dead.

Western actors and the teachers making oodles of money off them very quickly bastardized the Method all to hell and created numerous generations of actors who could cry on cue, badly chew scenery with the best of them, and create deeply moving intensity.

They often could not, however, listen to anyone else on stage, collaborate in a fluid performance, or play the less weighty scenes: "Hey, Charlie, what time is it?" "I don't know, maybe 5?" with any less intensity, leaving audiences exhausted by plays that seemed to take themselves WAY too seriously, and after-show meetings with actors who certainly did.

And they tried to transfer this to the screens, both large and small. Soap Opera acting, where every situation is dire and every bad line is delivered like it means the whole world, is a good place to watch the Method butchered by gringos and their half-baked instructors.

There are some very famous Method actors--Dustin Hoffman being one who frequently comes to mind because, in a moment of great fatigue and inability to go on, The God Olivier suggested to him maybe he should just 'act.'

It makes for a great story, and helps my cause of ignoring the Method, but it does not paint the whole picture.

As an actor--professional since age 13 in 1985--I can tell you that we are almost all very very insecure, that our arrogance is a rapidly built and agonizingly defended wall around the voice in our heads asking 'am I worth anything, will someone please love me, when will the next applause come?' We're a little pathetic that way, and the sooner we come to terms with that character flaw and either accept it or carve it out of us like a hangnail, the better off we'll be.

But many of us are not clear of that insecurity, that fragility of ego, and the Method allows us to think that we have some structure to hide behind, some set of moves and preparations that will lower the possibility that we will fail on stage or screen--because when we fail on stage or screen we are really just allowing the cosmos to tell us "yes, in answer to your earlier query: you are worthless and nobody loves you. And you could lose a few pounds, too."

So there are many, many great actors who are Method. But I firmly believe that they are great actors, without it. They have just built the habit of the Method and see no reason to let it go. It is like athletes who won't shave during the playoffs: I think we can safely say that doesn't make them hit or skate or catch any better, but it makes them think they can, and that is all that counts.

So, back to me. I hate the Method, have studied and discarded it, and find that the moments when my natural skill--that intersection of genes and environment that have made me the dissembler I am and will always be--can tune into the quietest moments on stage or screen or recording; those moments where I or my character are of the least value to the story, but where my continued involvement--deferential, glad to be of use--will help create the overall sense of a Full and Total Reality...that's fucking acting.

And that's fucking living. I can swash my buckle against the vomiting, the exploding pancreas, the agony like rainstorms having seizures in your skull. I can stand tall against the endless lapping waves of nausea. I can cry to N when it just gets so long, the loss of regularity, the erasure of a sense of the person I was 'before.' The disease.

But the the cure; the recovery; That's a different journey. It is a slow and patient climb back up towards normal, where I hope and intend to pass my old self, and walk a little further along the path. A better man, a fitter man, a man who knows how precious it is to not be here, on the 10th floor, plugged and tubed, measuring my urine output in coffee spoons.

'There will be time, there will be time,
to prepare a face to meet the faces that you meet.'

These days are introspective, as the Eliot will attest. These days are hours to fill with careful living, and the slow, spare making of plans. Of looking forward, and making sure I can see myself in the picture.

In the hospital just over 24 hours, we have had the schedule for this visit changed--lengthened--twice already. We'll be here till Late Sunday Night at the earliest.

But that's what needs to happen, so that happens.

I am not violently ill. I am just getting more and more tired, less and less comfortable. I don't feel poisoned as much as just adrift, too far from a finish line. Like walking back from falling through the ice--knowing you'll get home, but cold, and weighted, so weighted, soaked jeans anchors scraping red and raw shins, thighs, hips.

But home awaits. Warmth, familiarity, and perhaps a quiet moment to listen to the lessons you've learned, and be improved by them. Forever.

Friday, October 15, 2010

Accomplishment: A 4-part Report

Apologies for the time since last checking in. Between coming down off the high of success, sleeping a lot to catch up, and waiting so I could use the photos Jill Steinberg took of the event, it's been a while. But now I can report on four different happenings that, across the board, went well and made me feel really good.

1:You Have Given Me a Country, performed by VIA at 92Y TiBeCa:


VIA (VisionIntoArt) is a transmedia group dedicated to collaboration. In late summer I emailed composers/friends Paola Prestini and Milica Paranosic to see if they would read N's book--a creative memoir about her Long Island Irish-Cathloic mother, Indian Father, the child they create, and the truth found in the blurred spaces between borders, genres, and categories--compose music based on their reactions, and then help me throw together a launch event to display the product. I also asked video artist Carmen Kordas, who works with VIA, if she would create film pieces based on her reading of the book, but also timed and built to go with each of the musical compositions. N and I would perform the book's intro, and she would read sections from the body of the book, and finish with the last chapter.

They all agreed, easily and instantly, and this event was a powerful expression of how different forms and arts can come together and enhance each other. Paola and Milica have such strong reputations as composers and collaborators that people of ridiculous skill levels just kinda say 'hey, lemme know if you guys have anything I can be in on.' It never ceases to amaze me. The 'regulars' who played clarinet and violin are virtuosic (I probably made that word up) in the extreme. Rarely do I enjoy feeling like a lout, a hamfisted dipshit, a lummox. But what these musicians can do just cracks me open. With little rehearsal time, they plop down and play, and the sounds they make are impeccable, both as their own expressions of skill and talent, and also when mixed in with the whole.

And that's a strange mix. VIA pieces as often as not include electronic tracks mixed with live, voice work blended in with music, film, and elements from vastly different styles lying atop one another. And Richard Mannoia (clarinet) and Hiroko Tagucki (Violin) just tucked into their instruments and tore it up. Genius.

Carmen--while in Germany, no less--made video pieces that somehow spoke to the deepest themes of the book while at the same time flying next to and within the music.

And as if that wouldn't have been enough, we got ringers who signed on because they had either heard about VIA and wanted to be involved, or they were drawn to the specific piece and it's multicultural theme, or both.

Glen Velez has four Grammys. Four, like in almost all the digits on my hand. He is a percussionist the way Cal Ripken was a ballplayer: simply at another level. And here he is, hanging out with us, perfectly willing to step into the theatrical aspect of the piece and use one of his larger drums as a white-space in which to capture the looping images from N's book before releasing them onto a larger screen along the stage apron. Glen sometimes plays a Bodhran--an Irish drum--in an Indian style: bingo. And Lori Cotler is a vocalist--singer doesn't do it justice--of a range and skill that kind of just makes you giggle. She's a white chick with a mastery of an Indian singing style (bingo) that is glottal, staccato, and fast like bullets from a Gatling. She goes from this rapid-fire glory to western-style arcing melodies and folded-in harmonies as if the transition weren't of a degree of difficulty similar to shifting seamlessly from off-road racing to glass-blowing.

And Andre de Quadros shows up, a conductor of great renown currently helping chart the artistic course at Tanglewood, and sits down, lays out Paola and Milica's scores, and brings it all together. Did I mention he's Indian, with two half-Indian, half-Australian kids (saying Bingo at this point is getting old, but...seriously? Its Kizmet).

Don't get me wrong: I firmly believe that, putting bias aside, N's book is a great achievement and a work of art as heart-tearing and true as any I have read.

But that doesn't mean that I expect an idea I had a few months ago to try and do it justice would turn into this...this...triumph.

OK, I'm blathering on. In short, from rehearsal:








To the opening reading I was proud to be in:











Through the curtain call--where I realize I looked a bit like an extra from "Fosse:"




the whole night was amazing.

N has been nigh on killing herself taking care of me, bearing the burdens of worry, vigilance, and really heavy crap I used to carry. I sent Paola, Milica, and Carmen an email in the summer, thinking maybe I could throw together a book launch that would in some way do the work and the writer justice. But I never thought it would go this well. I have my friends in VIA, those of you who attended and spread the word, 192Books (who sold out all the books they brought) and the outrageous fortune of artistic openness--which tucked a few absurd extras into the night--to thank.


2: Light The Night:
Last night it rained. A lot. And the hundreds, or thousands, of blood-cancer warriors huddling under the FDR didn't care. I have no idea how many were there: my separate-and-count-umbrellas-stretching-across-the-Brooklyn-Bridge skills seem to be rusty. But we filled up the outbound lane of the walking path over the Bridge, all the way to the middle, where some turned back and others went all the way across to their homes in the borough.

People with gold balloons were walking for lost loved ones. People with white balloons were walking as survivors or patients. People with red balloons were walking in support and remembrance of the other two groups.

The only place I put word of my walk was here, on this blog. My white balloon and I raised almost two grand. Thank you.

N intended to accompany me. She would have, but I persuaded her that, between my increasing strength, the absurd number of oncology specialists wandering through the night around me, and her need for down-time to catch up on non-cancer work, she should stay dry and rested. She relented.

Each balloon had a light inside it connected by a little wire to a battery and switch you could hold in your pocket. Between the weight of the wire and the rain pulling the balloons down, the evening would have been better represented were it called "Light the Area Around Your Waist, and Sometimes the Ground."

But it was a moving few hours in the weather. There were more red balloons than anything else. The team from our City-State hospital with whom I walked had two white balloons and more than a dozen red. It says something that the largest population was that of healthy people fighting the disease, fighting for those of us with white balloons, and in memory of those of us with gold. In the quiet shuffling of feet through puddles, the oddly specific ploink of raindrops on balloons,and the watery murmur of walkers talking, I felt surrounded by people who didn't know me, but were busting their asses in one way or another to make me better. That's an odd, even eerie, sensation. But a good one. A damn good one.

3: The Dr:
N and I hied ourselves as usual to the Dr for Thursday blood-work--yes, this happened a few hours before the walk, but I am taking artistic license because it fits my flow better here. Back off.

As has become the practice, we kind of guess and take bets on my medical state each trip: need a bag of blood, bag of platelets, white count 1.8, no-soup-for-you for a few more days: that kind of stuff.

And we were pleasantly surprised to learn that my white count is above 5, which is actually somewhat like normal people. My platelets are 24. 24 is not high, but when seen in connection with the fact that they were 4--barely enough platelets to rest Glen Velez's Grammys on--a few days prior, that is good news indeed. And it has been long enough since I got a bag of platelets that these new growths are self-created, not borrowed from the bag. It means that my numbers are coming back up, not simply supported by the medical establishment. Very good news.

And I didn't need anything. They talked to us for a while, we cracked some jokes about Keith Richards and Ozzy Osbourne (loving jokes, but jokes), they pulled the single snakebite out of my chest, and we went home.

If this keeps up the twice-a-week visits may get cut to once-a-week, and then my numbers will be high enough to go back into the hospital at the end of the month for that heady mix of Cytoxan, Vincristine, and the Devil. Wheeeee!

4: The Chemo-thlon:
I went to the gym today. I've ridden the bike a few times since getting out of the hospital, but now that my numbers are getting better I'm allowed to exercise in earnest.

A Trathlon is: Swim 1.5km, ride 40km, run 10km.

A Chemo-thlon is, currently: Run 2 miles on the treadmill, ride 7 miles on the recumbent bike, swim 20 laps.

Chemo-thlons, it turns out, are really hard. Seems like there's a lot more panting. And I plan on extending the distances, or shrinking the times, incrementally as I go on. I have a 5K to fight Multiple Myeloma in a month, and if the chemo lets me feel good enough to do it, I want all the cancer cells watching on their goddamn little cancer-satellite-TVs to see me pushing; not giving in. Surrender is not an option.

But it felt great. I got my heart-rate to 180 or so running, and averaged just around 9 minute miles. I rode the 7 miles in half an hour without feeling like maybe an Eastern European limb cartel had drugged me and stolen one of my legs when it was over, and I swam the 20 laps in about 10 minutes, keeping a four-lap average time just above 2 minutes.

Oh, and I didn't drown, which I will take as a plus. It's the little victories that build, link by link, a chain you wrap around cancer's neck, and squeeze till it's friggin head pops off.

Wednesday, October 6, 2010

And another thing...

N and I are planning on doing the Light the Night walk on October 14, a big fundraiser for help defeating blood cancers--the not-terribly-inventive term for what I have as well as lots of other cooties killing and hurting people the world over.

If you want to donate, knock yourself out by clicking below this very bad picture of me with a balloon; honestly, I don't even remember posing. I don't even think I own a shirt like that. Weird:



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A month later I hope to actually run a 5K with and for Jim, raising money and awareness on the Multiple Myeloma front. That's right, you heard me; run. So this walk will be a distance test. And, of course, both are for good causes.

Thanks

Where's the other shoe?




I am running in my dreams. Not running athletically, as I did and will do again, but pure running. Using a top gear to get from point A to point B as fast as possible. Often faster than probable, as these are dreams.

Last night I was a college student, a member of a racially diverse chess team whose final match against a hated rival took place on the main athletic field. I had missed the cut but was supporting my teammate in the final. And I had, apparently, hidden a very important ten-gallon can of school-color confetti somewhere in the event that we won.

We were winning. As I walked up the hill to the field, all my teammates were standing, silently gesturing wildly to me--which isn't easy--so that I would go get the confetti in time for our victory.

And I ran. I ran a dream-run that is the kind of elated moment that makes dreams such powerful icons and waypoints in our slim human existences.

The campus was a hilly mix of UC Santa Barbara and University of Maryland Baltimore County--home of the Retrievers, whose women's lacrosse team will kick your ass. These two sites were my father influencing the dream, as he taught for years at UMBC and lived for less but no-less-loved years as an emeritus faculty member just up the mountainside from UCSB--the Gauchos, I believe, which I am sure strikes the self-preservationist New Right trying to whiten California as a little uncomfortable, tee hee.

Anyway, I fairly flew down a hill strewn with eucalyptus and maple leaves--ah, dreamscape--and into the main athletic building, sprinting on tireless legs past a women's gymnastics practice, along the slick edge of the pool where muscled young men butterflied and sleek-legged young women dove. Up the bleachers around the indoor track and down the long just-waxed hallway of administrative offices--nary a slip in my surefootedness, nary a rasp to my breath.

Until I got to the corner storage closet, ripped open the door, climbed the shelving to the top, and dug through old parachute material from the faculty day-care center and stacks of construction paper spiders and pumpkins silently reviewing some Halloween past, to the ten-gallon paint-can bucket I so swiftly sought.

By this time the bucket had become a tin of Utz potato chips, familiar to anyone from Baltimore and without pancreatitis--about ten gallons of space in a recyclable tin can, filled to the lip with oily, salty spud perfection. Betcha can't eat just one. And when you are done, you go back to the Utz shop--yes, Virginia, there is an Utz shop, catty-corner to the second best cheesesteak counter on earth, in Cross Street Market--and swap your empty for a new full can: they will (hopefully) clean and then re-use your discard, and the cycle of greasy happiness will continue.

In a lovely and pithy bit of the political worming into my dream, I discover under my confetti can a student ID for Barack Obama, I think from the University of Hawaii, except it looks like he is a gawky teen, so maybe he went there for a summer program. Though I have never been microsephalic enough to consider the Birther movement anything more than a heady mix of cowardice, racism, and stupid-as-shit-itude, this ID seems to me to be a nice proof of citizenship if one is ever needed.

I clutch the can to me and--and I love this art about dreams, because I think it speaks to our human understanding that we spend too much time making mountains out of molehills--step out a side door right next to the storage closet and smack dab onto the edge of the field where my teammate is about to win the chess match, I think with the simple move of a pawn that closes off the last option of his opponent's king--another almost-socialist touch: this dream is clearly influenced by the fact that I am reading 'Stories of Happy People,' by Lars Gustafsson, the closest thing I have found to a Swedish Milan Kundera.

Then it stops. All of it. I have never been blessed with the coup de grace in dreams. They rarely end for me, bad or good. The nightmares are endless attempts to flee a fear or run to aid a loved one in sand too thick to move, or choking tears from behind iron bands strapping me to some table so that I cannot help a friend.

The good ones roar towards some fantastic crescendo that I am never there to see. I like to think that the cast and crew of these dreams, ignoring that I have been ripped away, complete their scenes, cheering, hugging, laughing, even as my twisting visage drifts up into their sky and fades like contrail sketches.

Back to earth and the now, and all this running and victory in my sleep are signals that I have started what can no longer be denied is the latter, end phases of the main treatment. One down, three to go--barring catastrophe.

I love that phrase--barring catastrophe. It is so human: find me a guy who can bar a catastrophe you will have uncovered a god living among us. The entire point of catastrophe is that it cannot be barred. Wealth, brains, three generations running the bank before you; nobody can bar a catastrophe.

Avert, maybe. Avoid, likely. But barring one implies that the damn strophe has already catted, as it were, and well, once that has happens, put your head between your legs and kiss your ass goodbye.

N and I are perplexed by the fact that I feel OK. We're bothered that I am less damaged: there is a sadness so deep in having come to that place that I don't even want to address it, but there it is.

After the Naulasta flu or whatever it unpleasantly was went off on its own to die in the bushes and left my body back to me, things have been...fine.

My counts are low enough to have to take the antibiotic pills, each the size of a Buick, that were such a tummy-rumbler last time. We took a suggestion to take them at night instead of the morning, to both use the stronger antinauseal drug that puts me down and to maybe sleep through any discomfort, and it has been...fine.

My hemoglobin, continuing a months-long trend of being the rebel in the family--the long-haired, black-fingernailed pouting teen who shrugs instead of talking and does whatever is opposite of the rest of us--has gone up, close to a whopping 10, which means I have fewer issues of fatigue. So that's...fine.

I go back to the DRs tomorrow for more bloodwork and may need platelets and maybe some other stuff, but we had a visit from a dear friend from Spain, a shorter visit with her mom, I rode the bike for half an hour, I did a bunch of work at home, I walked the city a bit getting food or running errands, and I feel...fine.

As Carlin says:'How are you?' 'Fine.'"...Hair is fine! What kind of an answer is 'fine'?"

Next month will be the "A" phase of this Hyper CVAD, and there promises to be very large doses of Vincristine, Cytoxan, and the Devil, all in a happy four day dance, I believe. So maybe it will be less...fine then. But so far this has gone so well that we are paranoid, worried, assuming that somewhere, waaaayy high up, hiding behind the contrails of my dream tears, lies...The Other Shoe.

Drop, you bastard, just drop and hit me and let's get on with it. Because honestly, if the last week and a half--horrid though it was--was all I, we have to go through for all of frigging October?! Well, shit, I'm not sure what I will do with myself. Do they still teach macrame? Maybe a nice fern-holder, with a tail threaded through a cedar bead that will sway in the breeze of the, well, I guess, the air-conditioner, or a fan, or something.

Of course, as the deeply religious Murphy-worshipper I am, I know that writing this will bring it all on. Writing it out is like not taking an umbrella; yer just asking fer it.

But, unexpectedly, oddly, and a little scarily, I think I'll be prepared for the other shoe. And if not, I'll go to sleep, and twitch my feet in dog-dream running, fleet and healthy, tireless, and fast. So fast.

Friday, October 1, 2010

OK, when's this gonna end?



There was a ride at King's Dominion.

OK, I should back up.

My mother and stepfather bought a quarter- or half-acre plot of land a few hundred yards off the man-made-for-nuclear-plant-cooling Lake Anna decades ago. They got a cute little trailer and emblazoned a 'Virginia is for Lovers' sticker on the door. We used to go down there a lot. They would go alone as well, and at those points I imagine the sticker was more apt than when my pals and I were there jumping through the campfire, breaking our wrists seeing how far a bike would go off a ramp made of a milk crate and three feet of plywood (17 feet, one bounce, one ER trip).

Most of the trips were just for camping. Swim in the lake--I would drop a nuclear power joke here but it is, in fact, one of the safest and cleanest ways to create energy and we as a nation and a planet should be building new plants with the ever-safer tech we have at the rate of one a day, as the Chinese are currently doing with coal plants--ride bikes, canoe, build and stare into fires.

When a fire is going well on a summer night, and you loll your head back in your canvas chair, you see the magic of flame-lit oak and maple leaves dancing in the updraft. That is more than enough to keep me busy, most times.

But every once in a while we would go to King's Dominion, which has since been purchased by Paramount in some sort of 'nobody will notice we're forty years late buying theme parks and now we're just like Disney' idiocy.

I don't even know if it is still there. Once the DC beltway got as bloated, angry, and useless as both Bush administrations, we kind of stopped going.

At King's Dominion there was the King Kobra, which was a single shot down a track, a loop, and steep incline to slow your progress, and then the same trip in reverse. For the time, spectacular.

There was the Rebel Yell--it doesn't take much distance from a city for Northern Virginia to grab its redneck idolatry like a pitcher grabbing his crotch--which was a classic wooden coaster that sped and creaked and had the kind of initial drop that lovingly placed your testes just to the left of your pancreas--which I can locate with ease these days.

And there was this other ride. I forget what it was called. Maybe Millennium something--a good twenty years before that word would get horribly abused.

This ride was indoors, down a faux-rock cavern that hid the hour-long-wait twists and turns until you were inside and it was too late.

You walked onto the ride's floor and leaned against a spot on the wall, a slight dent, with a bit of a lip between you and the next dumbass.

The ride would start to spin, faster and faster, like the diamond-mesh-cage rides on carnival midways at state fairs everywhere.

But, to top the carny, something else would eventually happen.

The floor would slowly drift away, lowered down as centripetal force held you to the wall. You didn't notice at first. Then you looked at the burbling dipshit permanently across from you and you said to yourself 'son of a bitch, the floor's pulling away from that idiot. He's screwed.'

Oh, wait...

Eventually the floor would come back up to the right spot, the ride would slow, you would slide back to a standing position with not much more damage than your shirt having ridden way up your back and the unpleasant sensation that you probably just had your sweaty back crushed against the same spot as the guy you saw leaving with the acned beer gut poking out from under his 'Wrap your ass in Fiberglass!' Corvette t-shirt at three g's.

Except for me. I won the rpize.

That ride made me cross-eyed.

Didn't last long, but it was scary as hell: every single "if you make that face it'll stick that way" warning sounding at once in my ears like the very klaxons of hell's fire alarm. I was terrified, and terror and cross-eyed-ness kind of sustain each other in a feedback loop that had me pawing at the faux-rocks while still a good three feet away from them to try and find something I could trust.

Something that wasn't terrifying. Something that hadn't broken me. Something I had thought would be wonderful but was, instead, deeply disconcerting. Numbing. Horrible.

How far will the floor fall away, and when will I no longer be able to hold onto safety? When will this end?

Neulasta's kinda like that.

Long story short, we are home from the 4-day stint that is the first spate of Hyper CVAD. The hospital part was, actually, not all that horrid. Our roommate was 25 and scared but too macho to know that allowing the fear to be in your vocabulary is the fastest way to get rid of it, or at least de-fang it somewhat.

He would hide behind a loud display of ESPN on his TV, usually from about ten in the morning to whenever he fell asleep, and usually throughout his sleep as well. So we didn't get much rest.

The intricacies of each drug and when it was infused, and the 6 hour windows and the 12 hour windows and the pre-treatment for nausea or fatigue of whatever: it was kind of a slow, bed-ridden whirlwind, if you can imagine one of those. Like watching the Tony's with the sound way way up.

They dumped a huge dose of Methotrexate into me first over 24 hours. Then they gave me one last tidbit of it through my spine. Whee!

Then they gave me four fat doses of Ara-C, one every twelve hours.

And, surprise of all surprises, I was handed the agnostic's nightmare of yet another spinal tap: there is no higher power except the steel in my spine.

This time it was Ara-C. In the spine. Gently delivered by the PA on duty, but still: two Taps in 48 hours, two different drugs, and one that can burn your mind.

And--this is really fun--because ARA-C has the ability to cross the blood-brain barrier (which sort of sounds like what we should call those idiot settlements and walls Israel keeps raising in the way of peace talks), I had to prove that I was not being mind-burned.

This was accomplished by me signing my name before they gave me a bag. Then signing my name again when the bag was done. If the signatures were similar, then Katie Bar The Door, you're gonna be fine.

My signature is one of the lamest, least consistent, scrawling, sprawling messes I have ever seen.

I told N immediately that I was fighting with all my might the urge to flail wildly with the pen in the opposite direction of the piece of paper, mumbling quasi-coherently about Kim Jong Il's succession plans and how sometimes oysters and loogies are exactly the same thing. Roll my eyes wildly, quote Mickey Rooney's disabled character from "Bill For Short," and fall out of the bed.

I didn't.

There was little or no nausea, not too much pain, except the three-inch Carpentry nail they drove into my arm for the contrast dye for my second CT scan.

That CT Scan showed that I still have a bit of fluid in the 'tail of the pancreas' (which seems to me to be a likely candidate for the name of a children's book about slugs. I still have some pancreatitis right at the top of the bugger, so I still have to eat bland food for a while. Yay! More chicken, more spinach! MORE EGGWHITES!!!).

Because the Ara-C may leech into my mind, I have to take steroid eye-drops every six hours until tomorrow night, and therefore cannot see all that well at distance. Glad I got all the driving in last week. And sniper practice, come to think of it.

But you know what? We made it through OK, and came home last night.

And then today I went back to the Hospital for a shot of Neulasta.

Neulasta is this wonder-drug stuff that they shoot you with that energizes the white blood cells to reproduce, and gets your counts and numbers back up faster so that you are not slammed into the depths of low-counts for too long.

Remember, Hyper CVAD is subjective to your numbers: You go in for 4 days, get slammed with stuff, your counts crash, you feel like the ooze at the bottom of restaurant garbage bags in alleys, and then you slowly start to get better. When your numbers hit a certain level, you go in and they do it again.

So Neulasta speeds that second part.

Except it sucks. I have to admit that I am getting somewhat tired of the whole 'Killed by the Cure" thing.

The shot was quick and hurt less than the red-cell boosting Aranesp, but within three to four hours I was aching all over. Like a flu,or--a term I prefer quite a bit--the Ague. Makes me think if Poe and scummed-over ponds full of tannic acid and mosquitoes swimming death-circles upside down.

It hurts to pee. It hurts to lie down. It hurts to not lie down.

You want warmth. I told N this afternoon that I thought I would probably feel best if there could be found a hole deep enough in the ground that the earth's molten core kept it warm, and if there was a nice fluffy sleeping bag at the bottom of the hole that would be even better.

I almost went to the gym just to sit in the sauna or steam-room. I may do that tomorrow.

N gave me a hot water bottle, and it helps. But only helps, and there's just a sense of being broken.

N powered up her research skills and had blog and LLS website info lickety-split, and apparently this is gonna last a few days. Tylenol makes it better, a little, except when it doesn't, and taking Claritin helps a lot, except that is likely because it is an anti-inflammatory, which you are not supposed to take because it actually works against what the friggin Neulasta is doing.

I am hurting because my white cells are being told to get off their lazy asses and reproduce, like some saliva-flecked Mormon drill sergeant is hurling epithets at each individual white cell, terrifying it into marrying and reproducing with as many of it's kith and kin as is humanely possible.

How low is the floor gonna fall, and when can I get off?

At the same time I feel like quite the pansy. This time three weeks ago I was puking concentrated bile into a pink plastic bin over the riotous declamations of agony ripping out of my midsection with each heave.

Now I'm 'achy.'

Three months ago I was kneeling at the can in this apartment, drooling and weeping, unsure if I could stand.

Now I have the Ague.

But the downside to the upside of having a month off chemo is that the body, doing its best to keep you moving in the right direction in life and not just giving the hell up, erases huge bits of truth from your memory. In a pain-centric twist on the Janet Jackson lyric, 'what have you hurt on me lately?'

Then again, that's one down, three to go. The next 4-day chemical party will be Vinchristine and the Devil--boos and hisses from the cheap seats; thank you, thank you.

Then back to Meth and Ara-C. Then Vin and Satan once again.

Then we're done the heavy lifting. Maintenance...which I refuse to talk about yet because Jim is still right and getting out ahead of myself only means that I will have the uncanny ability to be the truck that runs myself over.

Left foot, right foot. Repeat.