Saturday, August 28, 2010

Quick "Hello, howayah?"



Just a short note because yesterday's chemo still has me pretty flattened, but...

The marrow biopsy came back and the news is good. Or, more to the point, still as good as it was before.

I haven't the slightest idea what all the specific medical blah-d-blah on the paperwork means, but all four levels of biopsy searches for baddies in my system found that I am still just like everyone other poor bastard on the planet...who is cancer free.

Tough to really enjoy it from inside the chemo, but I am delirious in a nauseated sort of way. There will be another three months until I get a piece of my soul stolen again, and the Drs don't have any reason to think it'll be any different then. In short, it's all good.

Sun is shining, they're planting trees at Ground Zero, and I'm fit as a fiddle dipped in Mathotrexate.

Like I said, I'm a little beat up today, but that's temporary. Today only lasts until tomorrow.

Thursday, August 26, 2010

"...Like a fastball needs control."



The above line is from the track "Isolation" from Iggy Pop's "Blah Blah Blah" album. 'Isolation' is a song about a junkie who needs the one he loves, just for a second, to even him out. The whole line is "I need your lovin', like a fastball needs control, my empty hands in isolation."

Iggy Pop has some great lyrics, all over his long long career.

But I was actually trying to write about Bowie. "Blah Blah Blah" was produced by Bowie, who produced Iggy's best early album, "The Idiot," which is the title of the Dostoevsky book Bowie holds in his hands as he flies through the air, reading, in a poster he did for American Libraries that hung in the hallway of my house...because in it, Bowie could maybe have been mistaken for me.



Which brings me, in the kind of arcing dive pigeons can make when coming in to land on the girders of an overpass or subway trellis, back to Bowie.

But not Bowie actually. Tin Machine, his band.




And actually, I made my own wended way to Tin Machine--or more specifically, some Tin Machine lyrics--because of a Karin Fossum book. Karin Fossum is from Norway, and she writes mysteries.

I love Scandinavian mysteries. Because I am part Scottish.

OK, wait, back up.

I miss my dad. He's dead. Cancer.

Have you ever heard of Daedalus books? They're great. It is a catalog of remaindered books. I imagine that, if you are the author, they aren't so great, because you can get a never-opened hardcover for 3 dollars. Mailed to your door. Daedalus Books is based in Columbia, Maryland, where I lived with my dad and stepmother--and, on and off, any one or two of my three stepbrothers, an aloof cat (I know: redundant) and a fantastic aging standard poodle named Bart who, dead these many years, still gets blamed for most of the farts in my life.

OK, where was I (I know: good question)?

Right. Ian Rankin. Sometime after 1997, when it was published, I came across a book called "Black and Blue: An Inspector Rebus Mystery" in the Daedalus catalog. Two, maybe three bucks.



My father was first diagnosed with cancer in 1997, and by then he and my stepmother were living in Nashville, where he was from.

My father and I always had a good relationship, but as I got a little older I was trying to find more intellectual pursuits I could share with him. He was the test case: I have since attempted the same thing with the other three parental units of my American family, and have been, for the most part, successful.

But I knew he had cancer, my dad, and so I bet that in late '97 or early '98, whenever I saw this $2.97 book about an Inspector Rebus, I bet I was trying harder than usual to make my father feel how close to him I wanted to be, even if I was miles away in Maryland or Saratoga or New York City.

So the name caught me: Rebus.

My dad had a knack for cartooning and caricature. It was something he sort of put aside as he aged and became a professor and father and all that--there was always something of the 'youngun' to it for him, I think. And something of the 'drunk.'

My dad was an alcoholic. Dry some 20-odd years when he died, and proud of every hard-earned day of those decades.

But before that, he'd known where the bottom of a beer was, and he could sneak up on a glass when it thought it had the afternoon all to itself.

And his cartoon characters more often than not came from that world. Long-faced gents puking long trails of cheap beer out of huge American cars. College boys clutching school pennants almost as hard as their drinks.

Even his most debauched cartoons--that I have seen, anyway--always had a bit of good old Southern shame to them. You knew the drunkards would feel it the next day, you knew they knew, inside, that they looked liked fools. You knew they were trying hard as anything to not think of what their mother would think if she saw them.

I inherited that shame, and am extremely proud of it. It has helped me time and again to know how to try and be. Make a mistake: feel ashamed: don't do it again.

Nice and clean.

So, the 'star' of a lot of these cartoons was a character named 'Reber.' I never figured out if that was Dad drawing himself, or an amalgam of everyone, or one of his equally drunk brothers, or what. But Reber was often, if not always, around.

And Reber is pretty close to 'Rebus,' the Inspector's name. And Ian Rankin, the writer of the Rebus mysteries--and Rebus himself--are Scottish, like my dad's half of my bloodline.

Long story short (it is at this point that you laugh your drink through your nose, then curse me) I ordered the Rebus book in duplicate, and sent one to my dad.

We would read it together, talk about it, have something nice and material and discussable to talk about if there ever opened in one of our phone calls that huge hole where I would never cry "I don't want you to die" and where he would never say "I'm terrified and I will miss you."

Turns out he didn't like it that much: a little too dark for him. And Rebus, it also turns out, was a basically non-apologetic alcoholic--not one of dad's favorite detective archetypes.

But we had a good few chats about it, and he appreciated the gesture and the shared experience from so many miles and so much fear away.

I, on the other hand, was completely hooked. Turns out Black and Blue was eighth in a series, so I had to go backwards, catch up, then keep going. Have since read all 25 Rankin novels, Rebus or not, as well as all the Val McDermid's and a host of other Scottish mystery writers.

I then moved slightly south to England and Dick Francis, a genius recommendation from my stepfather. Have read all 43-plus of his--except the one co-written with his son Felix that comes out this year, after his death, which I just found out about Wiki-ing him.

But after that, and a quick jaunt to Ireland, for the Ken Bruen mysteries and a lovely discovery of "A Star Named Henry" by Roddy Doyle, I moved to were it was colder and the people were, if possible, even less emotional than Scotland: Scandinavia.

I am not sure how I got the first Henning Mankell mystery, 'Faceless Killers,' which introduced the long-serving detective Kurt Wallander. Might have been recommended by an actor friend with a similar reading addiction. But I am glad I did.

These Vikings--my mother's half of my bloodline, with a little Irish mixed from both sides to allow me to have a sense of humour, thank christ--wrote mysteries the way they made movies. Elegant, dark, not all that interested in things getting better, but pretty sure the weather would stay cold and not all that surprised when things turned to shit.

God, it was great.

Since then I have read most of the Scandinavian mysteries I could find in translation. Even books about countries near Scandinavia written by gringos. I have fully hooked my wife and stepfather and we can hear my mom drifting down the fjord towards us as we speak. I prefer the Norwegians if I am reading from the mainland, which could be because that's my background, or because they seem most capable of embracing the bleak with a joyful solemnity (once you figure that out, you'll know what to love about their work).

But the best of the best so far has been Arnaldur Indriatson, from Iceland, a country whose literary prowess, from the Sagas to Laxness, boggles the mind when held against the size of the population. Indriatson's "Voices" could be the best dark detective story. Period.



We are lucky enough to have the matriarch of a family in Baltimore we've known most of my life who, at whatever age closer to a hundred than she is to fifty, whips mystery titles back and forth at light-speed whenever we get to visit her.

I'm telling you: detectives in shit weather trying to figure out who bashed someone's brains in: no better way to keep a family engaged and interwoven.

I know Stiegg Larsson has the whole planet semi-erect and Hollywood is racing to make lesser versions of the very good Swedish films of his Millennium books, but, honestly, they're OK. Just OK. A little chatty, a little fond of themselves: I think that's why they've done so well through the West. He'll have come and gone--which is impolite because he's already gone, but you know what I mean--and long after there will still be boys and girls, men and women, ruining their next day at work or school because they absofuckinglutely cannot go to bed until they have finished an Indriatson, a Fossum, a K.O. Dahl.

Asa Larsson, a Swedish woman, is also damn good, and does the refreshing favor of having a female protagonist who doesn't solve crimes despite having to get the kids fed and the carpets from the cleaners.

But Karin Fossum. Ooh, Karin Fossum, Norwegian, manipulative, tricky, and not nearly as respectful of the reader as we gringos are used to. Great stuff. Great.

Her Inspector Sejer Mysteries are currently being devoured in rounds by me, N, my mother--when she's finished an Indriatson--and soon my stepfather. N outreads us all and is pretty much done, but we're getting there.

So there are Fossum books just laying about the place. And the one I had to read before the one I am reading now is called "Don't Look Back." Sort of a purple cover.

And "Don't look back!" is the first line to the Tin Machine song "Prisoner of Love."

You thought I'd forgotten, didn't you? Thought I'd completely lost the thread. Well, HA!



As I have mentioned before--probably with the Bad Religion lyric about the scent of unseasoned wood--I have a tendency to spiral out of control within a lyric if it gets stuck in my head. And seeing "Don't Look Back" every few hours as I wandered the apartment for days on end has damn near buried "Prisoner of Love" hilt-deep into my mind.

Bowie was in Tin Machine, a band he formed and staunchly defended as a democracy (there are some great pics from that era where he wears a shirt that says "Fuck you, I'm IN Tin Machine!) for about four years, '88-92. Lyrically there is a lot of Bowie's social conscience, Soupy Sales' sons Hunt and Tony were bass and drums, and guitarist Reeves Gabrels played certain solos with a silver vibrator. 'Bus Stop' off their first album is a pop gem, and "Goodbye Mr. Ed" off their second album has the kind of sadness only Bowie can really make you love.

Here are the lyrics:

Prisoner of Love: Bowie/Gabrels/Sales/Sales

Don't look back, whatever it takes to save your life
I believe I've belonged to you for a long time
And my heart says
no, no one but you

Like a rescue on a darkened street
Love walked into town
I was a victim of my own self-persecution
I'm a prisoner of love, but I'm coming up for air

Now don't be fooled by fools who promise you
The world and all that glitters; more fool, you.
I'm such hungry man that I beg you over and over and over and over
And I might take any highway to be there with you
Even the best men shiver in their beds
I'm loving you above every thing I have
I'm a prisoner of love--just stay square

Like a sermon on blues guitar
Love walked into town
I was drowning so slowly
One step in front of your shadow
I'm a prisoner of love, but I'm coming up for air


I smell the sickness sown in this city
That drives me to hide you, yeah, even deceive you
I'm so afraid for you that
I'll break any thug who maps out your passage to ruin
Even the best men shiver in their beds
I'm loving you above every thing I have
I'm a prisoner of love--just stay square



May or may not be poetry that you will never forget, but it has an emotional arc, and if I replace "love" with "chemo" I get an even better idea of why this song hasn't left my head for more than five minutes since last Saturday.

But the other reason I have had this song in my head, and the reason I can wander so far down the Joycean garden path of word-associative blather, is that...I feel OK.

The first couple days after the last chemo were extremely unpleasant, as advertised.

But this eleven-day cycle really is longer. I only get ten this time to work around a weekend, but still...

...I have had three days in a row where I basically felt...OK.

Still a little poisoned, still short of breath, still unsure of I am hungry or if some drug is just telling me to eat.

But all at a level that is light-years of improvement over past stints.

My step-father had been away for a bit, so when he saw me a few days ago it was the first sighting in a month or so. He emailed when they got back to Baltimore that I looked better, that it was good to see.

I'm too close to it, find it too hard to believe. But yeah. Maybe. N has talked me through it, even gone back through our Super Fun Cancer Book! to show me how many more ailments and complaints an average day had a month ago versus now.

Dare I say it: I'm making progress?

The eleven day cycle exists because what I am getting and how much of it I am getting is still very rough, and those days immediately thereafter will stay all kinds of un-good.

But there are stretches of OK now. And some of them are kinda long.

I'm not counting chickens, and I will spend more time thinking about the marrow results when they come in, but, looking at it with a clean eye and a bellyfull of beef-fried rice...

yeah...

I'm doing OK.

Wednesday, August 18, 2010

A day of great length.

Before my issues, and my day, and anything, a moment of silence...



...Thank you. The brother of a good woman died over the weekend. He and I have the same birthday. He found out he was sick two weeks ago: cancer. Now he is gone.
I cannot but be true to myself, so have to quote Spinal Tap: "Too much. Too much fucking perspective." And then lead singer David St. Hubbins apologizes to Elvis' grave.
If we can't laugh when it hurts the most, we are not actually understanding why we evolved the capacity to laugh. I am sorry for your loss: you, who are left here. You, who remain: I am sorry.



Onward.


In the immortal words of the achingly beautiful Spinal Tap ballad featuring Cher: "Just Begin Again." It is off their album "Break Like the Wind."

To steal from a friend's email: Ding! goes the bell for the start of round three, and here we go again.

Today was stew. Goulash. Gumbo. Chowdah! A mix of a lot of feelings, sensations, deeply interesting musings, thoughts, fears, all punctuated with large and small violations of my body. I hope that doesn't explain it all that well, because I am not sure what the hell it was, really, so at least we're all in the same boat.

N and I arrived at the city-state that is the Hospital bright and early at 8:30. The regular rattlesnake installer in the Leukemia wing was off for the day, so we hied ourselves to the older cancer/chemo wing and met our nurse for the day, a gent with a goatee and a watch I believe would be described as 'chunky.'

My veins did not cooperate, as they tend not to, and we could not get 'good return,' which is medical slang for blood flow out of the rattlesnake and into the tubes. It's like a bad stock investment: stuff goes in no problem, but you get nothing back.

The nurse was a man. With pride. Men with pride do not ask for directions, and, apparently, nor do they ask colleagues to try and get good return from a patient. Pride is a sin, I am pretty sure, at least with the mackerel-snatchers--I have no idea if the WASPs held onto the deadly sin thing, or if it got in the way of earning money and defining taste and deportment according to your own puritanical and likely fluid set of beliefs. I should check with N, as she has a almost witch-like capacity to identify Papists from well over seventy paces. She's like a mackerel-snatcher divining rod, which is a metaphor I enjoyed the hell out of mixing.

So, eight syringes of saline or so later, and with no more out-flow than when we started, we hied ourselves the hell away again towards floor 5, where I was to renew my vows with the convivial interaction of man and needle that is a LIVE! DIRECT FROM HELL! THIS IS SPINAL TAP!

Hello-to-you-says-my-butt gown in place, I waited a while--they don't want you to get a tap until they lower your core temp a bit by leaving you in the freezing cold waiting room. Then I waddled down the hall, safely stuck to the floor through my rubber-nibs-because-we-don't-really-believe-you-can-walk hospital socks, and laid myself out on the slab.

A female Dr had me sign some forms likely absolving her of any screeching tears in my spinal column, then poked the hell out of me with the anesthetic, which I have learned is a good sign. The harder they jab you with the numbing needle, the less of an issue the spinal needle seems to be.

And today was no different. She dribbled the 6cc they needed to check and make sure I didn't have any baddies in my spinal fluid. She then responsibly replaced my losses with 6cc of Methotrexate. Let the games begin.

Then it is back to the world's coldest waiting room, where you are mandated to lie flat for an hour. But they do bring the monitor that shows your blood pressure and pulse every fifteen minutes into view. Except you have to crane your neck to see it, and it is above and behind you, so you see it upside down. 116/55 and a 96 pulse-ox are a little blurry upside down while shivering, but I managed.

N had gone to get me food while I was laid out, and I ate it greedily while waiting to see the Drs for the Marrow Biopsy, which would precede the IV Vincristine and IV Methotrexate.

Wait? What's that you say? Didn't you just get 6 merry cc of Methotrexate pushed into your spinal column only moments ago?

Right you are, and aren't you a bright and attentive reader of self-absorbed cancer blogs!

Phase three--the ding you heard earlier--starts with a double-shot of Methotrexate, and the IV Meth amounts get raised every time you get chemo if your numbers are staying high enough to support it. So each time we arrive and get bled, the numbers will be checked, and if the platelets and White Blood numbers are amenable, it is up the Meth ladder we go. Wheeeee!

I did not need to wolf my food, as we were left in the hall for a while, because drilling a hole in some poor schmuck's pelvis and twirling out a nice juicy earthworm of marrow for four different tests of the canceritudedness of my carnal form is a somewhat involved event, so they wanted to take care of the quick and easy patients first. Which, frankly, I understand. I mean, even theatrically, that makes sense, right? Act I: Blood pressure and maybe some bad news. Act II the drawing of blood and a wailing, inconsolable spouse. Then, Act III...BOOM! Drill a hole in a guy's ass! Barnum, Marlowe, and Loeb all woulda loved it.

But eventually we were taken back, I was placed stomache-down for the second time that day, and the lead Dr Himself began core-sampling my tuchus (I could be misspelling that--I am only one quarter Jewish through step-family, and I don't know much about the god-ghost-stories in my bloodlines, so having high hopes for my Yiddish is probably a bridge too far. But, I try.)

The Lead Dr is deliberate, and he does everything the same way each time. He likens it to a Japanese Tea Ceremony, an act of devotion honored for its near-religious repetition and adherence to form. I would have imagined him in a kimono with chopsticks glued to his bald spot where a bun should be, but I was pretty keyed-up by this point.

He pulls your pants down just far enough for you to close your eyes and run through your visual memory of who was in the room when this all started. He cleans the area around where he'll do his digging. He speaks calmly, describing each act before and during.

He numbs the area: "There will be a pinch and a burn, OK? Here's the pinch [Ed note: damn right there's a pinch!] and here's...the burn [Ed note: ow!]"

Then there is the relatively benign thumping and twisting as the core sample of your bones gets started. You are numbed in the places the Dr is cut-poking through. This is the part that feels like a root canal in your butt. There's really nothing that gets as close to that description.

Then the hole has been made and the pull has to happen.

This hurts like shit, for the most part. But in a very, umm...a very--

OK, this is where, as an artist, I get sort of clotted up. I think that it would be even worse for N, because she is a writer, and a writer, even more than an actor, spends a great deal of time and energy and passion and life-force trying to describe events or feelings in a manner that will do them justice and, hopefully, be understood by a broader group of people.

And the 'pain' of the pull is, frankly, indescribable, which is in many ways unbearable to me.

I mean, you could use the word 'hurt.' You could get by on the word 'hurt.' I am certainly gripping the living snot out of the table edge. I think I am making a noise somewhere between a groan, a keen, and a whimper. But I am not sure. It is extremely unpleasant.

But it is interesting. It is fascinating. The Colombian Dr on a learning-residency said that in his country they describe it as 'taking a part of the soul.' And he's not wrong. When I tried to describe it to N I said "OK, pretend I have a huge pair of invisible tweezers that can pass through bone. Now think about something really pleasant, really nice. As soon as you get that thought solid I reach into your brain with the invisible tweezers, and I pull it out, and take eighteen long seconds to pull it fully from your mind."

But that's not really it either.

OK, lemme try again. I can't see what the hell's going on because, you know, it's happening on my ass. But if I go purely by sensation then what is happening is that something very internal, something that has, since the day I was born, considered itself 'me' is being pulled out of my body. Not 'part of me' or 'a section of me.' But just 'me.'

Like when you look at your dog and you see in his eyes that he can't do math but he loves you: that thought is complete, unbroken, and unquestioned.

My marrow has never before been considered an optional body part. My marrow has never before been a component of me, to be separated and viewed in and of itself.

It is that kind of deeply ingrained, indivisible part of you that is being pulled out of you.

You do not know what the word 'inexorable' means, feels like, until a professional sawbones takes seventeen to twenty seconds to extract marrow from your butt.

You feel the slippage, you feel that this particular meat is clinging, doesn't want to go. But the Dr is stronger than the mute wants of my meat.

Slip, catch, drag, pull, slide, catch, twinge.

And it is painful, in a pure sense. But painted with this sense of loss, this tugging uncertainty.

You know what? I'm gonna stop. Because I think it is somehow beautiful to just accept that I cannot describe the exact kind of inner and outer, felt and sensed pain that is eighteen seconds of marrow pull. It is nicer, I am now realizing, to just leave it at that.

The Dr got a great pull, according to N. We will get bits of info over the next few days, but the whole shebang of what we hope to be good info isn't expected until the end of next week at the soonest.

Then we talk for a while while I lay flat, we cover the new rules: I need to drink five liters or so a day because the Methotrexate and the Peg Aspargase will stress the liver and pancreas and other fun stuff.

Phase Three will supposedly not damage my numbers as much as they will strain some internal organs--mainly the ones that strain and clean what passes through you, which makes sense.

Then everyone leaves us alone, we wander over to the chemo area, I get my IV Vincristine in short order and follow it quickly with IV Methotexate, which I notice for the first time--because it isn't going in behind me--is yellow like Gatorade (the original). Hmmm.

Then off to home, walking very slowly through the humidity and the anger of a New York August Wednesday. The subway is crowded, the traffic is limitless and has its collective panties in a bunch, and we get home and order steak for me and shrimp for N because my protein levels have been low--which is a horrid embarrassment when you come from ranch stock.

And tomorrow I get to go back and get the Peg Aspargase and two bags of blood.
Phase three. Left foot right foot, repeat.

Ding!

Thursday, August 12, 2010

Where we're headed



This is a mountain. It is in Montana. It is bigger than I am. It was taken by my step-father. It is bigger than he is. It is bigger than cancer. Multiple Myeloma. Precursor B Cell Acute Lymphoblastic Leukemia. Hemorrhoids. Whatever.

It is big. And old. And not going anywhere. At least not in a time frame that I need to give a shit about.

So here's where we are:

Phase 2 of the French Protocol for 14 year-olds that I am on is over. I don't know if I have graduated, or matriculated, or simply survived. But It's done.

Which allows for the joyous event of...wait for it...

Phase 3 (fanfare, trumpets, confetti, and free gherkins for every child in the land!)

There has been a little bit of a break to allow me to get 'healthy' enough for the Drs to start poisoning me again. It was humorously ironic in May; now it just sucks.

The break ends this coming Wednesday.

N and I will go to the hospital a little later than normal because Wednesdays are on a different schedule. I will get my blood taken as usual.

Then I get the back-to-the-future joy of going to the joy-filled and alarmingly small waiting room up on 5 in IR, where I get to once again don the here's-my-butt gown and get a LIVE! DIRECT FROM HELL! THIS IS SPINAL TAP! full of my old-school dose of methatrexate.

Then I go back downstairs to the 3rd floor and they will hopefully have my bloodwork back and I will know if I am indeed in fine enough fettle to get a bone marrow biopsy and my first intravenous dose of methatrexate. This dose will be higher than its spinal cousin because, obviously I guess, the bloodstream has more space worth poisoning than the spinal column.

I will also get a good old intravenous dose of Vincristine...yawn. I've been on Vincristine so long it's like a morning vitamin these days (OK that's a total macho lie: Vincristine is horrible and makes your skin wax-paper and lingers like the last kid at the party who can't hold his liquor and is scared to go home because his dad beats him. Vincristine is bad. Bad.)

Then they'll send me home--possibly in a doggie bag, but home I will go. Because the next day we get to go back for a nice little needle-drip of Pegolated Aspargase--which is also something of a mean-spirited harlot who likes to spend languorous days and weeks wandering your system like an angry teen looking for just the right bottle to pick up and throw through just the right window.

Long, badly metaphored story short: Phase 3 is a bit of a kick in the pants. And it starts next week.

Phase 3 runs on eleven-day cycles, which means that the schedule we have gotten at least a little used to will have to evolve. Phase 3 is shorter--four sessions, or whatever they call them--so it will draw to a close somewhere near the beginning of October, depending on a few sliding days of chemo scheduled around weekends to avoid staying in the hospital overnight (which, we have scientifically proven, sucks).

The bone marrow biopsy is supposed to come--according to the French Docteurs who put together the protocol, at the end pf Phase 3. But our Drs think that there's no reason not to have an idea of how well or not well I am doing earlier. If there is a certain percentage of identifiable residual disease in the marrow Biopsy at this point, then we will probably have to change tacks entirely and go the marrow-transplant route. And if that's the case, why spend an extra three months on a chemo regimen that isn't working, right?

And I gotta be honest, if we have to go the transplant route, that's gonna be really, really hard.

But I'll do it. I'll do whatever I have to do. I have help. I'm not backing away from anything. And it'll get done.

But the Drs seem to think that I have been going along about as well as can be expected under the circumstances, and they don't think that they will find the percentage of residual disease that would be required to tear down the teetering world N is helping me prop up every day.

Being half-Scottish and half-Norwegian, I'll believe it when I see it, so I will spend this coming week on a pragmatic/nihilistic binge-mix of rest, eating, exercise, and unmitigated fear.

But somewhere inside I do have a sense of trust of the Drs, and I think that the marrow will come back OK. I probably won't believe it if it happens, but I think it probably will. And a few days later I'll get past my issues and be really, really happy about that.

So that's the landscape from here.

Except for one glorious addition: I SWAM!!!!!!!

A fact is a tiny thing, and it can fall through the smallest of cracks. So it should come as no surprise that the fact that I COULD HAVE BEEN FUCKING SWIMMING JUST ABOUT THIS WHOLE FUCKING TIME dropped, lithe and slippery, between two slats in the boardwalk of my surroundings, and it was only last week that I learned that I am allowed in the water.

But, as they used to say on Ally McBeal: bygones. Focus on the positive.

Swimming is amazing. It turns out gravity is my enemy. Pumping blood at the right speed to the right places, getting oxygen to blood as it passes through the lungs, not passing out when you stoop to tie your shoe then stand again: these are actions defined and lorded over by gravity.

But when I am a manatee, when I am kelp, when I am caught between the devil and the deep blue sea, gravity can kiss my lily-white barely-extant ass.

I use a kickboard. I put a swim cap over my bald head--the kind of rule-bound redundancy that makes me giggle (Like 'TCBY Yogurt,' which, if you spell out the acronym, actually stands for 'The Country's Best Yogurt Yogurt'). I wear goggles.

The first day I did 7 laps. Five months ago I could have done 7 laps in 3 minutes, maybe less. Now its more like 6. Today I did ten laps: still around 6.

It isn't speed, or musculature I haven't felt used in months. It isn't really anything concrete or specific. It is just this ache of joy.

I just started crying, and I'm OK with that.

Here is what it is: I feel like I felt before...all of this.

In the pool, breast-stroking slowly from one end to the other, breathing easy, I can forget. For little seconds. For whole strokes. For the time it takes to push off the wall, dolphin once, and kick the feet once more, together like a seal, before I come up and breathe.

For those glorious, sparkling, silvery nickels and dimes of time, I can pretend I don't have the disease. Because I feel like I used to feel.

I didn't realize how tenaciously the sense of what I used to feel like has lingered, waited, slunk beneath the weakness and the panting and the flaking crinkly skin.

I wanna be that way again. I wanna grab the me I was. I wanna be better, stronger, faster. We can do it. We can rebuild him. We have the technology: Vincristine, Methatrexate, Lumbar Puncture. Marrow Biopsy.

Time.

I've had a good cry. And so, yeah, it's bittersweet. But mostly it's sweet.

If you need me, I'll be at the hospital, getting better.

Or in the pool, weighing nothing.

Big mountains. Don't even notice us. Doesn't make them any less beautiful.

Wednesday, August 11, 2010

"What is that? Is that Granted? Can I take some?"



To take for granted. To go back to what was likely the original wording 'to take as granted.' More so: to assume something is a gift.

But 'granted.' That word implies that there is still some power above ones own doing the granting. It is not 'to take for birthright' or 'to tale as found money' or anything. But 'granted.'

Probably, etymologically, it comes from old English (like 'Ye Olde Sandwiche Shoppe' which is usually near a check-cashing place) and the granter was a lord of a manor or king or some other such putz--putz being used as a term of art here.

So I will not address it as such, because the things I am--and have been--taking for granted are not the domain of any one person, place, or thing (or animal, vegetable, or mineral, for that fact). They are just aspects of life.

Sunset. We live in Manhattan. West side. I have it on good authority that the sun sets pretty much every day. So every day we get a sunset. And from this proximity to the river, this divot of water before the slow rise of Jersey, we get some good ones.

There was a tire fire in Jersey, almost straight across from us, a couple years ago. Horrid for the environment, but thankfully nobody hurt, and the sky. My god, the sky. Come eight o'clock that summer night, the sun was a bloodshot egg yolk falling slowly through black snakes and orange haze, back-lit contrails above Newark Airport like the silver spikes in a Geisha's hair, and the show just kept shifting, changing, slowly dying as the orb dipped and burned into the backscape of hills farther off and the plainness of the darkness that followed was so much more thrilling for the light show that had receded it.

Like Krakatoa, or that more recent volcano in the Philippines a few years back--they told us they were disasters, but the sunsets would be great, for months, years even, until the dust the earth barfed settled on the outside of her skin.

And here I am, 'assuming something is s gift' or 'taking it for granted.'

However you slice it, I'm not doing my stillpoint in this turning world much justice by letting the good things roll off me when the bad things seem so eager to stick these days.

Like remission: Officially--unless the Drs are lying like cheap rugs--I don't actually have leukemia anymore, and haven't since the end of May or early June. All this abuse is medicine--spoonful of sugar my ass. Very soon--even later today, maybe--I will get another hole drilled in my butt and we'll see where we stand in terms of residua disease. But until the core sample of my ass comes back saying something different, the assumption is that I don't have it, and this abusive year of nauseated, hairless weakness, is really just an extremely out-of-proportion capful of Robitussin.

It is hard to take that one for granted: there's so much evidence of the disease--even if most of it is residual damage--that I rarely, if ever, stare in the mirror and think "They got it. We're fighting, but they got it" It would be like te people you see standing in front of the matchsticks that were their homes, clutching snot-nosed, terrified babies and wearing whatever they slept in and saying 'at least we're all still alive." I mean, I believe them, but they don't look all that pumped, you know? It isn't like saying that makes them happy, it just maybe sops up some of the sad like white toast does to a runny egg.

Like my family. For a while, and based almost certainly on old anglo-saxon American pre-set sensibility, I had a hard time calling it that because it was just me and her and, when he was alive, our dog Lugnut. But each person goes out and makes a family. I am a man with a family: her name is N. I have filial generations arrayed around me, some living and some dead, and I in no way mean to devalue any of them. But when you say 'well I sure hope my family gets through this crisis' or something you usually mean the nuclear unit in the same house you're in.

So that's me and N. I was raised by a good couple of families, and then N and I made the choice to become one. And that means more than sharing the rent and snuggling. I will raise my hand first and highest when the teacher asks 'and who has made mistakes building this family,' but hopefully each whoops was followed by an 'oh, I get it.' And onward and upward as she teaches me and I teach her and we spend more and more time on a couch, legs touching, moved by the same poignant line from Poirot on PBS or snarfing pasta out our nose at the same dogs-trip-fat-women montage on America's Funniest Home Videos.

But we're forging a life, slip up and triumphs, cancer and sinus infections, clean sheets and small dances in the hallway.

And I'll take that shit for granted the second it gets a little scary. And I should be frigging ashamed of myself. And I am. And so I do it a bit less. And so things progress. And maybe, when they hole-punch my pelvis, they will have gotten better still.

I guess what I am saying, mainly to myself but you're more than welcome to listen in, is that this huge wet blanket of a disease and its treatment are not only NOT excuses to let everything else slide, they are times that DEMAND a higher level of attention to everything.

Because of the payoff.

Think about it.

If I--or you, but I'm really only thinking about myself here--can work on being a better man. Can see the world as it is and appreciate it thusly and without prejudice or disappointment that it isn't otherwise. Can tread water in the applesauce. While the Medical establishment strips the cells from within me with a flesh-eating Drano they've spent years developing leaving me weak and nauseated and drugged and weeping and lost and wobbly on my pins and headrushed when I stand and wistful about acrobatic feats of strength like trotting up a flight of fucking stairs...

If I can, in the middle of that omelet, NOT take things for granted.

Well then, hell, how far ahead of the game am I when I get better?

Huh? How far?

There may be thunderstorms tonight, but I'm checking for a sunset. Just in case.

Sunday, August 1, 2010

Psychotherapy! Psychotherapy! Psychotherapy!--The Ramones



Sorry it has been a while. I had some stuff to do. Very little of it was throwing up, but still, it's been busy.

My therapist says...BAM! What you just heard was the sound of me, dropping yet another plank from my platform.

I have always had some level of, if not distrust, then leeriness, of therapy and therapists. A large portion of this comes from the empirical data collected over the years that the children of therapists are exceedingly often the most fucked-up people you will ever come across, hands down.

Some of this comes from a therapist I was sent to as a youth because of difficulties in school, who took a lot of my parents' money and wasted a good number of afternoons to come to the conclusion that "You, young man, think your shit shouldn't stink."

I assume she wasn't speaking literally.

I could have saved everyone involved time and money by copping to that from the get-go. That was never in question. My control-issues, and desire to be there for people, and be someone others cold look up to, and to be attractive, or charming, or in any number of ways worthwhile: that was all an open faced sandwich for anyone who was curious. She coulda just asked me, and we would have been at Baskin Robbins on Charles Street within ten minutes, two scoops to the wind and no parent the poorer.

So that's where my lack of awe with the profession probably started.

Granted, I think I was 12, but some lessons just stick.

Now, for a set of significantly weightier reasons than not getting the best grades my intellect implied I could have, I am once again on a couch.

It actually is a couch, this time. I sit upright, but still. The last hack just sat me down in the sunroom at her house near Towson. Cheapskate.

Where was I? Oh, right, the present.

I have documented pretty clearly here my weak moments. The welcome-home freakout. The 'shortness of breath; episode, the 'if I tell you why I don't want Ativan I'll cry' monologue. I've tried to be honest and faithful to my failings and my victories against both the disease and the cure so far.

So now, here N and I are, a very convenient three blocks from our home, getting to know a therapist. I apologize in advance for using what may be incorrect terms; she could be a licensed social worker, she could be a psychologist, she could be a sheep-shearer with a very good cover story. I do not mean any disrespect, I only mean to show my ignorance of the details.

N started it...and, as is more often than not the case, she was right. She knows some head-shrinky types and asked around for cancer-specific mind-benders, and a couple names came up and this one was, as mentioned, right around the corner. And, I sigh and add, extremely well recommended by people in the Cancer Community--which would be a horrid name for a new housing development outside of Cleveland.

I have had two, christ, do I have to call them sessions? Sheesh. OK, I have had two sessions. The first with N to make sure we got the time-line of sickness and recovery and freakout and everything correct--left to my own devices I am as likely to confuse four weeks on prednisone with eight hours in the ER two months later: time has to stay elastic for me or the drudgery and the sloth and sickness and the pain would overwhelm. N was pleased with our hour, and had questions answered, as did I. An introductory session, but a good one.

Then I went back on my own, bravely climbing her outlandishly steep stairs and at least feeling justified at being short of breath.

And you know what? It has been a good thing. I will say that, and I will acknowledge that I am taking myself down a peg in my own system of things by saying that.

My position on big D Depression, and mood-altering drugs and dependence thereon, and Therapy, and all off it, come from within a fortified, blessed tunnel.

I made it from mid-February, 1972, to April 15 2010--tax and diagnosis day--through my share of unpleasantness, but nothing more or less than millions of others. But, for some reason, I was the type of person with the type of psyche that could find a coping mechanism to slot my little devastations into--little cubbyholes--and then spend time over time making sense of them, growing immune to them, accepting them, and/or in many ways making them the central column of who I am.

And one thing that hadn't occurred to me, until very recently--thank you very much, cancer--is that the longer you stay not-dead, the more you take in, the more you learn, the more grey areas you understand to be the basic template for life, the less equipped you are to self-protect.

When you are a kid, bad is bad and good makes it better. There's a Zen, a certainty, to the more elegant workings of the young mind.

When you get older and begin to tread in the complexities of it all, it becomes harder and harder to just react as a child might, shrink back to the hiding places: you realize you don't fit in them any more. Hide behind a tree, then look down and see that your chest is visible from the front, and your ass is hanging out the back.

I have yet to break down in a session. I am not sure that's the point. I seriously doubt this woman will roll me up in a mattress and have me reenact my birth, or ask a sock puppet I have named Holter 2 why I gave myself cancer. If she asks me to finger-paint, I will ask for a discount.

But I am accepting that, well, to take all the fun out of creating ones own catchphrases and blazing new paths of prose...shit happens.

Shit happens, and even when you are strong and have an amazing support group and even when you were so strong even weeks before that you could have run a marathon, and even though you know yourself pretty goddamn well, some shit you just need to spread out a bit. You might have to take a pill so you can stop throwing up. You might have to take a pill so you stop eating only tears for breakfast. You might have to talk to a trained stranger about...well...we haven't gotten to too much of that yet.

And taking those steps may very well be defeats to the person you were before you got sick.

When I was writing the therapist a check--paying for two sessions in advance, probably as some form of control, I paused at the 'memo' line.

Coulda written her name.
Coulda written 'medical appt.'
Coulda written anything.

I wrote "Therapist."

And I felt defeated.

And I also felt...

Brave.


The hideous cliche about courage is that you are just as shit-scared as the next person, but you do it anyway.

I am shit-scared. I have gotten closer to accepting the happy pills as nausea pills, but the terror that they are eating me surges through sometimes.

I am shit-scared. I see that my numbers are reacting just as the Drs think they should, but every once in a while "Die In Your Sleep!!" flies on bat-wings through my darkened skull.

I am shit-scared. I let my wife and my mother and my friends help me when I need it, and searing flashes of me unable to help others, unable to say 'here, lemme get that' ever again, concuss behind my eyes; migraines of fear.

But you do it anyway.

Since my last post I have gotten a lot of emails with headings like "the voice in your head is a dick" and "just stop it" and "you are still you."

But one extremely observant young woman wrote:

"So if you'll take some advice from a teenage climbing instructor: keep three anchors on the wall (only move one limb at a time), climb with your legs because they are the strongest, don't look down--eyes on the prize--and if you need help, your belay team can take up the slack and lift you up one more inch, so you can get a good hold."

I'm getting a good hold. I am doing it anyway. It is changing me, dammit. And I'll handle that, too.