I have been silent. You have been yelling

My apologies, but do not equate absence with inactivity. I have been very busy, actually, feeling like garbage.

OK, that is not totally true. My mom was back in town and went with me to Chemo Thursday, and I took the second Atavan of my now full-blown addiction (I think I've had four) in order to get through the last LIVE! DIRECT FROM HELL! THIS IS SPINAL TAP!

No more Taps for a month; pause while my yawp of triumph stumbles into a little sob...OK I'm back

The tap went alright, not as good as the last one but pretty good nonetheless. And considering that they had to drain 6cc of fluid to check for Central Nervous System infiltration, and that I have not had the headaches, I am happy.

The Yippee pill and the relatively quick rest of chemo that day--just a bag of Vinchristine after the final tap--made for an OK afternoon. I sensed that I would pay eventually (prescient, you are, young old Jedi) so went for an early dinner at Outback, and I did more damage to a steak and potatoes that I had been able to for weeks. A pal even managed to swing by for a brief visit with her spawn, who was decidedly less drooly and inert this time.

We got home to N, who had taken a much deserved and much needed rest while we were out, and the evening ended soon thereafter.

Friday...well, Friday, as George Carlin says about sex: "I don't wanna get into that now, heh heh heh, because I think it takes too long, har har har."

Friday was the beginning of a very long weekend of increasing nausea, decreasing energy, and the newly arrived bonus pack of restless-leg syndrome and upper-GI dry heaves.

But to those in a minute.

First, the good stuff. As you can see from the above photo unless you are a moron, we have set up the bike trainer, and I have actually ridden it. I managed 20 minutes the first day, then 10, then 30, then 15 again intermittently in the days since. I am finally voiding the hours and hours of DVR'd cycling races--mostly the Tour de Suisse--from our home unit so we can tape really valuable stuff again, like Lie to Me and Formula One Qualifying.

And second of all, you people have been shouting at me.

Since my post about my Atavan issues I have gotten a large number of volubly supportive emails from friends and family and acquaintances across the board. Most could be summed up as "N is right, you need this for now, so take the damn pills and then leave it behind you."

It isn't even the message, it is the method. People saying that they would call but they know they'd cry. People saying that I had done such work over the years convincing them that I was straightedge that they would be crushed if I came out the other side a pill-popper, so I better get it figured out. And people battling their own medical issues. People whom I know have pharmacological needs and masters in a way I cannot understand. People whose kindness flings their own woes and worries aside when they see someone else in need and who plant their feet and say "shut up, N's right, take the damn pills and get it behind you."

This kind of generosity of spirit is something to which I can only aspire. And I do, and I will.

All the talk of getting past it makes me think I should have some sort of pill-burning party when this is all over. I wont flush them down the drain: AND YOU SHOULDN'T EITHER: there are Carp with boobs and Bluegill with eating disorders because of all the meds we flush down the toilet.

And, sadly, no, I won't just give the fun stuff to my friends who really like that kind of evening. You know, a canapé, some Dilauded, some Atavan, and a Jan Michael Vincent film.

No, I'll sit there by you as you make that choice, but I'm not fucking helping.

I Know! We'll burn the pill bottles, then sell the good pills to local schoolkids...and give the money to The Red Devils.
Ah. I feel much better now.

I'm not on anything right now, by the way. Unless Valtrex, Fluoconazole, Diflucan, Protonix, and Bactrim count.

So thank you one and all for the support. Simple, but true. Thanks. I needed it.

As I said, the rest of the weekend was bad. Well, Friday was bad, then Saturday got her panties in a bunch that Friday was getting all the attention and so poured a whole barrel of un-good into me all day. That's when I discovered that I have the odd ability to eat, say, an apple, and then ten minutes later retch like crazy over the can and having nothing come out. Same thing goes for Turkish Lentil soup, so it isn't an apple thing (for those two fools who were thinking that it might have been Transylvanian Apple-Specific Phantom Vomit). I guess it is somewhat reassuring that when I feel nauseous to that extent these days it is as likely to be a huge and extremely unpleasant burp and not 3-D Food Network programming, but still, it feels pretty bad.

And my legs. Unless I am on the trainer, already asleep, or walking around a bit, my legs have the agitation of Woddy Allen's early films, like you are rushing to get the half-dozen bagels you left on the counter at H&H--five pumpernickel and one 'everything' for your goy nephew-by-marriage--but you have to get home before your mother arrives with an oily paper sack of Hamantashen and a walleyed girl from Larchmont she insist is 'holding up lovely considering everything she went through with that schmendrick.'

I will jump out of bed just to walk to the other end of the apartment, where I find, oddly enough, the other end of the apartment, so I walk back...and that's 40 seconds killed right there.

It has gotten a bit better of late, and I may be doing some stretching that helps, but it is still weird.

So this week I hope to feel good enough for long enough to finish the audiobook my extremely understanding employers have given me, and then go from there. Thursday morning we go and I get labs, and if my numbers are high enough it means that I have started doing a good job of raising my White Blood and Hemoglobin counts on my own...which wins me the prize of getting donkey-punched with the next month of phase II, month One through which I just emerged.

But hey, that's what's on the menu, right? Tuck in.

I'm on drugs II

This one's gonna be hard. Bear with me; I may have to circle around a bit before I can land.

OK, Father's Day came and went--at least that's how I remember it--and the Drs had said they wanted to see us again Monday morning to take blood and see where I stood.

I was having trouble standing.

More of the same discomfort of the GI tract and headaches, but added weakness from the weekend of abuse, and a fun new party trick: the full-body piss-shiver.

This one's for the guys: you know when you are peeing and your whole body shivers without any notice, for no reason, and you can't control it? To quote Carlin: "What is that, man?"

My personal theory is that it is an evolutionary leftover from when we didn't have the opposable thumbs that allow us to shake ourselves dry, and involving the whole body was the best we could do; but my theorizing and $2.25 will get you a subway ride in NY.

For everyone still in the dark about what I am talking about: you know when a baby yawns, and, right at the end, his limbs and trunk shiver in a tight-muscled way?

Like that, only on an adult, with leukemia, and, by the time we got to the hospital, it was happening pretty much whenever I moved. And I was getting pretty freaked out.

My numbers all looked good, the Drs agreed that it was weird but didn't have a reason for it, so they gave me a litre of saline to give me back some of the fluid a weekend on the can can take away, and they gave me IV versions of the best fix-your-guts stuff insurance can buy.

Then they suggested we stay the night. The shivering hadn't gone away, I still felt like crap, and they weren't sure what it was.

They decide that it may be that I, like many chemo patients, have become lactose-intolerant. So what I have had was a general case of gastroenteritis just like the average Jane would get, but my numbers are shot...and I'm feeding a Lactose-intolerant, abused stomach bowls of Lucky Charms with milk, so I'm not helping.

This leads to flurries of shopping and the appearance in the fridge of Almond Milk. How the fuck do you milk an almond? Those people must have tiny hands.

In discussion with N's father and a few of the Drs, the slightly-accepted theory was thought through that I am extremely sensitive to steroids. That the two 100mg doses of hydrocortisone I got on Thursday and Friday for the platelets and Peg-A were enough to either throw my body into a mini-roid fit, or to create a withdrawal in my body as soon as they were gone. The mood fragility and jitteriness of the Pred days were making little appearances, and my voice was squeaking up a bit as well--which was a looming issue, as I am halfway through an audiobook and had a big HBO booking on the horizon.

They don't have a bed yet, so we get parked in the Apherisis room for four or five hours, across the curtain from a woman on a six-hour dialysis that had me counting my blessings.

By around 6 pm, we get admitted to the hospital--finally getting on the other end of the stick and being the good roommate for a guy about my age who had been plagued by a horrible roommate until we got there. The guy was a Bears fan, but you can't win'em all.

I have to cancel the day on the audiobook and call to have the HBO booking moved, if possible. This is one of my marquee jobs, and I have already missed one month's recording dates. They have been wonderful and have made it clear they want me back, but I have enough of a Calvinist work ethic from the cheap Scottish bastards on my dad's side to feel very very bad whenever I move or cancel work, regardless of the reason...obviously.

The evening and night progress, I feel slightly better all the time, and manage to sleep most of the night. Still feel bad, but less bad, in the morning. One of the attendings reiterates, really looking me in the eye as she senses I may not have a good enough grasp of this, that for someone like me, having a White Blood count below 1 is a very crappy experience, and one that may very well make itself known in a host of unpleasant ways I am not prepared for. But it is all just that. For the first time, I am having my immune system crushed by the chemo and I do not have the steroids to mask the effects. So even though my numbers were as low or lower during Induction last month, I was jacked on the pred and--for all the horrors of that nightmare--the pred protected me from the general sense of patheticness I was wallowing in now.

We get discharged from the hospital and head home by early afternoon, and I survive the cab ride without hurling or getting out early. We settle in for the night, and N makes me a nice clean pasta dish that goes down easy and well, so I have a little strength back. I have lost 7 pounds in 2 and a half days.

The next day I get up early, as always, and prepare for the HBO booking. I am terrified, running the HBO catchphrase over and over in my mind and out loud to see if the bass is back. Maybe I am too attuned to it because it is my job, but I can hear the slightest loss of my general vocal strength, and I have gotten used to the weaknesses that the Pred brought out.

And it just isn't there. It is not horrible, and every third or fourth try (living in New York you can walk the streets with your head held high and just say things like "And Now, the HBO Original Series, True Blood!" at full volume and nobody even looks at you) sounds passable, but it is by no means up to my standards.

I get there, I see old friends in the studio, and I do the job. They seem happy with it: it isn't what I would have wanted, but it is better than in the morning, and between background music and technological trickery, it will work fine for them.

More important to me, I have returned and done the job. The audiobook has been great--and the people at the audiobook fantastic--but the backbone-of-my-VO-career-ness of the HBO gig just made it the one I got the most worked up about nailing. And, while I did not nail it, I did it, and as we left they said 'see you soon.' And I smiled.

So, high on that success, I walk over to my agency for an audition. It is June 23, and it is about 10 in the morning, and it is approaching 90 degrees. Humidity through the roof. I stop twice to sit on sprinkler coupling--what you people outside NY would call a 'chair'--to rest, but get to the agency and record the audition. By this time I am weak enough that, if I get that job, I may not be able to reproduce how bad I sounded reading their copy.

N had arranged to meet me after and we would walk home together. On 7th Avenue, she asks how my day went:

"I'll tell you when we get home."
"OK."
"I just can't talk and walk right now."
"..OK."

We get home, climb the friggin's stairs, and I go straight to bed.

Where I lie down to rest the two hours before the re-scheduled audiobook session.

Can't sleep. Can't get...comfortable.

Can't...breathe.

I did not want to alarm N, but I learned from my broken A-fib heart that YOU TELL SOMEONE WHEN SOMETHING IS WRONG, so after testing my theory for a bit, I reached over and tapped her where she sat beside me doing her work on the computer and said:

"I'm not sure what shortness of breath is, but I think I am short of breath."

She freezes like a back-road deer only for a second--really just thinking so many possibilities through in her head at once that if a deer tried that it would shit itself and then explode--and then we call her father, who has her listen to my lungs with the stethoscope--nothing--and describes what he would term shortness of breath. None of it nails how I feel, but bits and pieces fit.

I can breathe, I can draw a deep breath into my lungs, but it doesn't feel any better, like the air isn't doing the job. When I was trying to rest, at that moment when you drop off to sleep, I kept waking myself up because of some fear that falling off might be a lot longer fall than I was prepared for.

We call the Dr and get an answering machine. We call the Dr's service and get an answering machine. We call the cell-phone number the Nurse Practitioner was nice (stupid) enough to give us and leave a message.

We hail a cab. We head back to the hospital.

A brief wait--long enough for the receptionist to re-prove to us that she has the award for worst employee locked up for the year already--and we get taken in to get more blood work.

We feel a little better, I have eaten some Triscuits because I am at the edge of deeply hungry still, but don't have the stomach to get caught up--and the the NP sees us.

She has my bloods from the previous day. N and I figure I probably just need a bag of blood--shortness of breath is a hemoglobin thing, right? But yesterday's numbers are good, so if the hemoglobin dropped enough to steal my breath in a day, that would be worrisome, yes?

This is what I choose to fixate on. Worry, worry, wonder, invent.

Waiting, I can't sit, I can't stand, there's no comfortable position, I can't read my book--another good Scandinavian mystery--I can't stay connected to anything. I have the hood of my sweatshirt up and my hands jammed in the pockets. I am slowly curling, legs crossed tightly at the knee, head getting closer and closer to my lap. It is either an inspired prawn impression, or I am closing in on myself.

Which is just what I'm doing. In my mind, in my chair. There's a screaming in my skull only I can ear--hornets riding race-bikes in tiny tiny circles.

My bloods from ten minutes earlier come back. The NP plugs me into her portable pulse/oxygen monitor to prove her point. My pulse/ox is 100%, likely better than N's and the NP's as well.

I am as healthy as a horse...with leukemia.

The NP tentatively but with certainty says "I think it's stress."

Elephant, meet room.

N flashes her eyes to me. She knows it's stress--not necessarily this, but knows that the now-daily occurrence of our little chat:

"You freakin' out?"
"Yeah, but I'll be OK."

is likely the culprit in at least some way.

I sit on the examining table while the two women slowly reel themselves towards what is in the air already: drugs to calm me down.

I assume everyone reading this knows me, or has at least gotten an idea by now. I hate drugs. I am a straight-edge of the old order. Beer five times to test my hypothesis, champagne twice because of some pushy asshole's birthday--one glass each time. Weed twice to test my hypothesis, twice to be a good pal to my friends, and once to prove to myself that I was, indeed, utterly horrible high. I learned that lesson very fast, as wandering naked really really fast in a circle around the furniture of a cabin in Montana hyper-evaluating everything I have already said and critiquing my performance as myself on pot gets old a lot faster that the drug wears off. Oh, and eating fistfuls of trail mix out of a huge Tupperware bowl the whole time.

Everyopne else can do what they want. I'll judge you, but I know that's subjective. I'm right, of course, but I'm willing to pretend there's room for interprettion if it will stop you from feelng bad about yourself until you are away from me.

I have every reason. I have addiction histories in my family. I have friends who were smarter when I met them than they are now. I have friends who are not my friends any more.

And I have control issues. A dear, drug-addled friend of mine once said:

"You see, it's perfect: Holter's a control freak, and I have no control!"

And then he laughed really hard so he wouldn't start crying.

My four years of High School were the only fours years for about a decade in either direction to not have a DUI death among our peer group. I in no no way take full credit for that, but I drove fully 70% of my peers' cars at some point from 9th grade to 12th. Or drove drunks home in the back of my pickup, stacked like a slave ship, and had the most-awake guy in the back roll them over the gunwales near their lawns.

To get in my truck and drive away clear-headed always seemed like the better option. Not because of some moral high ground, but because it made me powerful. And it seemed to be a power I could create, simply by not doing something. It was, and I openly admit this, all about me.

If some cooler guy at school mocked my stupid hair or the fact that I was an actor or the fact that I weighed 135 my senior year, well, he was just a stoner.

If some punk at a party called me faggot for my earrings and took a swing, well, he was just drunk. And since I wasn't I could duck and not hurt my pretty face...then maybe steal his girlfriend.

Throughout my life, when things have not been good, I have had at least the illusion of control within the confines of my own body.

I am an actor. That is my profession and vocation and passion. If I asked you to 'step into my office' you would have to climb up my ass, because I am all I have.

The one thing, the ONE thing I can return to is that I know myself, I can take the blame for everything I do and I can take the credit for everything I do because I, I am doing it. Nothing clouding, nothing between one and the experience, nothing that might make memory of an act or an emotion or a moment blur into a half-truth of partial awareness.

Tim Leary was a bright guy who got high and lost all value, The Grateful Dead play some of the most boring repetitive music ever created, and if you are still impressed by "Howl" after about sophomore year, you're not trying hard enough.

Drugs are a crutch. And I only have me and my body, so crutches...they're just...


Defeat.


That's what it was. What it came down to for me. To think that this disease, this fucking disease, had gotten me to the point where I couldn't even assume my own body would not ruin me from the inside. To have gotten to a point where I was so turned around, my head so far up my ass, my inner wheels spinning so fast in the mire and the terror that I could psychologically shorten my breath, ruin my appetite, weaken my knees, and push tears through the ducts?

When everything you are is just 'You,' what do you do when you can't trust yourself?

I learn that I am allowed to break a sweat, that it actually helps hemoglobin and that exertion--except right after a Tap, is good. So I can set up the bike on the trainer and not feel bad spinning my feet each day, burning some of it off. Burning.

By now I am very tense on the examining table, and N and the NP are talking options. I know how it will all play out from here, but the symbolic two moments of defeat are still coming, and I am not going to handle it well. the NP says:

"I think Atavan is the better option, because of the shorter time-frame."
"OK..."

N looks up to me, willing me to get out of my head and get into this discussion. For my own good. The NP notices, and asks why I don't want Atavan.

"If I tell you I will probably start to cry."

The NP backs off, but N pushes, thinking, no, knowing, that starting to cry is the least of my concerns, and that I have to push past this, justified or stupid though it may be. Big breath:

"About two weeks before my dad died, when it was getting really bad, they gave him these Atavan swabs we could put under his tongue. Had been totally dry 20 years or so, and the second that stuff hit his system, the gleam in his eye of his old 'lubricated self' came back. Instant (I snap my fingers). He was like 'OK, yes, that's better...when do I get the next one?'

This man who until his dying weeks had a better physique than I ever will, this man who found a Meeting when he came to visit me in Spain and the Meeting figured out it was his ten-year-dry anniversary, and when he went the next day a bunch of Spanish strangers had baked him a cake. This man who got up before the sun most days and had the paper read before I was out of bed. Who wore his shame as a means of self-improvement, who sought to be better all the time, who had Fully. Beaten. His Addictions.

One swab..."When do I get the next one?"

I am not taking a shot at my dad: he was ashes within two weeks of that day. No foul. But the image will never leave me. That's why you don't do it.

You don't want to be owned. By anything.

I cry it out. I know they are right. We get the script. We go home.

Weeping in a taxi and trying to not let the driver see AND trying not to get carsick is an intricate gymnastic that I don't think I pulled off very well.

At home, on the couch, I cried some more. No, I bawled. The privacy, the sanctity of the home and just N and me, I bawled and bawled.

I tried to explain to N just what felt so ruinous about it to me. She knows me, knows my issues and beliefs, and knows the general placement in my head of all this. I told her that, to me, if you peeled back all the layers, or if a disease stripped away all the layers, stealing them from me one at a time until there was just this little kernel left, that kernel would be me, tinily intact, and it wouldn't do drugs to escape some problem, and it wouldn't need drugs to need help getting out of its own way, and it wouldn't be on drugs just because every cell in its marrow had betrayed it.

It would be a defeat. Getting the script was a defeat, and now, taking the pill...a defeat.

She understood, and the she talked me down. She told me 1: people who have had worse things happen to them have felt this way--bottomed out, stolen-from, violated. And that they found out that there was still more of them inside, if they were strong. And I was. That's what she told me; she held my face and told me I was strong. She told me that people close to me would feel much better if I could climb out of the attic of my skull right now and relax and concentrate on healing.

And 2: if you take an Advil for a sore muscle--and I do--then this is just a mood-altering Advil for a systemic sore muscle. It is what you have to do right now to get better.

Left foot Right foot. repeat.

She said it better, and she's right.

I took the pill. It did help the nausea--as nausea centers are located in the brain and not the gut--and I only felt a little slippery when I stood up the first time.

But it is there. The siren: "Maybe you should have another, hmmm? Your stomach's not so hot this morning...that's what the Atavan fixes, doesn't it? Doesn't it? Just take one. N's not awake. Don't tell her. Or tell, but after. It's fine. Its cool."

So, OK, Leukemia. You can have this. You can have this as well. This macho, man-pride control-issue alpha dog bullshit that has been part of the tape and stucco holding me together since before I can remember.

Take it. You can fucking have it.

I'm still here. That wasn't it either. The essence. Whatever-the-hell it is; that wasn't it, either.

You can't have me. I'm still here. So kiss my ass.

Those are pearls that were his eyes.

Though I know the quote is from "The Tempest," I am taking it from Eliot, because I take everything from Eliot. The Waste Land, Part I: The Burial of the Dead.

But the line was born as a goodbye to a father, full five fathoms deep. Which is where I wanted to start.

Fathers Day.

But first, let me get my medical crap out of the way. It has been an annoyance to me, and so mayhap I can get through it for your sake quickly.

I apologize for being out of touch through and beyond a Thursday, but I was shuffling through a bit of a nightmare in nothing but underwear and soccer sandals: whaddaya gonna do?

Thursday morning found us at a different hospital--Mount Sinai--which was even further up on the east side, if that is at all possible. We were there for our 9/11 interviews.

During the first phases of the diagnosis, when we were still unaffected by everyone telling us that the 'how' didn't matter as long as we fixed it, it came to our attention that some people found it of interest that N and I both worked on the pile that had been the World Trade Center. We were there form 9/12 to 9/14 actually working, hauling stuff, handing out water, eye-wash, respirator masks, etc. And N also worked for FEMA at the Missing Person's desk.

And we live just a couple miles upwind, less than two blocks from where the cut-off zone of danger stopped.

When we mentioned this to Drs they said 'yeah, sure, that could have a connection to his leukemia. Inhaling heavy metals, poison dust. Sure'

We delegated research into this angle to a pair of caring west-coast ex-UC librarians who happen to also be family. So five or six seconds later we had the appointments at Mt. Sinai, which is the hospital coordinating the care ad research of 9/11-connected (or not) illness.

Frankly I am glad we went because they paid as much if not more attention to N's sinus issues and GERD since than they did my disease. All their questionnaires are geared toward bad breathing, bad stomachs, or shell-shock (George Carlin and I refuse to call it Post-Traumatic-Stress-Disorder, because "maybe if they'd still called it shell-shock our servicemen and women might get the help they deserve).

So, anyway, poked and prodded by new and different Drs and now we're on their list as well.

Then rush down to our regularly scheduled hospital for the second part of the second Phase of the protocol: the glorious return of Vinchristine and Peg-A. Plus more methatrexate to the spine.

Except my Numbers were too low. My platelets were 172 last week, and 12 Thursday morning: wheeeee!

So I got my Peg and Vin, and then time was up so it was home for the night.

Thursday night I got a nosebleed. Before I got my platelets. Not, in medical terms, good. Not a gusher, but still a melding of 'nose' and 'bleed' that we could have done without. One annoying call to our NP's home phone, and two or three annoying calls to N's dad (more on him anon), and we at least got to sleep. A note: using an entire athletic ice-pack to chill one nostril doesn't work really at all well. N didn't sleep much, watching me all night to make sure not too much blood gushed out.

Friday morning: two bags of platelets then safely into the LIVE! DIRECT FORM HELL! THIS IS SPINAL TAP!

This was the best Tap so far (of course now that I have said that, they are going to try and do next week's with a turkey baster). The Dr--a new one for me-hurt me more with the numbing needle, but I didn't feel the spinal puncture at all. Though I was worried enough abut it for the nurse to ask after the fact "Was there a minute or two in there when you got the better of yourself?" Apparently, the heart monitor went for a bit of a sprint right when he started lining up the needle.

Then back upstairs for two bags of blood, as my hemoglobin was cascading as well.
All to be expected: it is the Drs intent to keep lowering my numbers whenever they have the temerity to go up on their own. But it also gets in the way of the work they are doing poisoning me, so we get to play teeter-totter with my system, but only for seven more months or so.

So that was two straight twelve-hour days.

Saturday and today have been taken up mainly with Vinchristine and Peg-A showing us that they were really hurt that the Devil got all the press last month. Vinchristine wanted us to know for certain that they, too, are seriously bad-ass. Suffice to say I haven't gone far, haven't eaten much, have slept fitfully but for a day and a half straight, and would rather have my teeth removed with a cordless reciprocating saw than go through the last 36 hours again any time soon. Were it not for N, well...I don't wanna think about that. Imagine a sequoia shopping, doing laundry, cooking, cleaning, folding, and caring for the driveling mess on the couch all at the same time: that's at least a sense of it.

OK, so that was my weekend, but it is Father's day. On to greater things.

My father is dead. Cancer.

There's a simplicity in saying it that way. Just say it, because it is that simply true. The vacuum left by his passing and the pain of his loss are not less real by stating it simply. When I miss him the pain is like the shock wave from one of the Howitzers he commanded in the Corps between Korea and Vietnam: this shocking whump of truth--a permanence shattering the silence--that you cannot avoid and cannot ever be truly ready for.

You want paradox? Or the swirls of reality that make up a childhood? On the day my father taught me how to kill a man by driving the bones of his nose into his brain with the heel of your hand, we had spent the afternoon tiering off our backyard in a Baltimore spring and tilling the soft black soil for a garden. My father did not believe in starting fights. He believed in ending them. A history professor from the South with a liberal streak a mile wide. If I had to distill it to one lesson, one thing that, through these tears, I will carry with me above all else, it would be this: my father would look at a situation and he would try and understand what a Truly Good Man would do. Then he would do that. I don't know if I can, but I will try.

But there it is. Get used to it; he'll be dead for a long time. Hugh Davis Graham. Dad. Christ I miss you.

And life, while never replacing or usurping a father, has other fathers in it.

My father-in-law, a man who has traveled further to have a life here in NY than I can even imagine, really. A man who has been on call as a Dr for us from the opening seconds of this battle, who has driven scrounged stethoscopes and quickly-bought thermometers into the city on ten minutes notice. A man who has known when his 'I'm a Dr, you're fine' will save me from the shrieking of my own psyche. And the man who equally knows the value of not making contact until cried for.

Hell of a man. For whom I am thankful.

And my step-father. Lawrence, Long Island's James Arthur Gordon, whose mother is captured on video recalling with a sunburst of love that her boy had 'problems with deportment.' You have to imagine that quote in a fluid, New York, Jewish accent; it makes her devotion and caring even more vivid.

Jim has known me for most of my life. I fought his entrance into our world, because I had a dad, and because that's what spoiled brats do. I will carry the shame for my behavior toward him for the rest of my life, and equally will I use that shame to make sure that I am a better man for it; to him, to others. We have found our place, and it is a good place, and it is mostly because of his capacity for endurance of my asinine antics that we are still good. For irony: the day he taught me how to throw a lacrosse ball I beaned him dead-on in the face. He didn't blame me, or get mad, or take it out on me. Just walked home with one hand cupping his battered nose, and the other carrying his lacrosse stick, and mine.

I always feel a little bad saying 'step' before 'father.' To not add it would be to deny my father and refuse my name. But to add it always creates this space. I cannot reconcile myself to it. But I hope, and suspect, that he knows that I say it with pride.

And Jim has been through some of this lovely chemo crap. Different specifics, but achingly similar moments throughout the treatment. When he first saw on the schedule that I would be getting Cytoxan, he carefully and lovingly kept his mouth shut so as not to scare me. When I emerged from that shit-storm of a weekend getting acquainted with Cytoxan, we looked at each other the way veterans do, and it made me feel better.

It has been his admonishments that have kept me as close to 'in the moment' as I can be. His internet searches that have replaced the electric-razor cord I left in Stefan's room (And I'll be fucked by a sow-shovel before I go back there). His equally fervent love of Scandinavian mysteries that has given me someone to race. His support of my mother upon seeing her boy wasting away that allows me to know she has someone to hold her, as do I.

And N. She's fathering me, mothering me. Hell, she's dog-sitting me some of the time. So she gets credit in here when men tend to dominate. If this weekend is anything to go by--and it is--then I can safely say that I do not have the imaginative ability to see where I might be right now without all these fathers, and without her. I don't want to think about it.

But I just did, and it brings me back to the thought of people less lucky than I. people fighting cancer alone: no advocate, no driver, no hero, no lover.

If you have the time and the dime, please give to

The Red Devils

so those people can have as much to be thankful for on a stupid-ass, corporate, bullshit, Hallmark Holiday as I do.

Thanks.

'Time Moves Slow, Like a Curve of the Earth'-Adrian Belew

This rest of this week has been, as you may have noticed, pleasantly slow for us. The horrid reverse-eating spectacular of Saturday was not repeated, and I have learned my lesson--and how--in terms of the anti-nausea drugs.

There is another silver lining: I have a much better understanding of what nausea is and what its levels feel like. Since the beginning of the process, during the month in the hospital, almost every medical professional entering our room would ask "are you feeling nauseous?" And I never had a very good answer.

I get carsick, rough enough seas will make me seasick, and certain food events--like some slimy broccoli I recall with great, pained clarity from a vegetable quesedilla in the late '90s--certainly bring on the desire to hurl, followed by the event itself. But those feelings are not so much nausea as the imminent clearing of the digestive system.

Nausea, that sedentary negative feeling of a horribly sad stomach, was not something I could pinpoint. Am I nauseous? I don't know. I just feel bad.

And, similarly, I now know whether or not the anti-nausea drugs are working: THEY ARE.

I now have a very clear sense of the differential. Nausea is not the 'here-it-comes' sense of seasickness. It is the permanent debilitating weakness and unrest of the stomache. I had always connected the about-to-hurl thing as the true test of nausea. And maybe without the drugs that is what happens. But when you are on the drugs you just have that endless negative sense in your gut. It is a located discomfort, and it doesn't move, because the drugs are softening it as much as possible. I have come to live with that at least a few days a week. but I can do that: live with that. No problem.

So now when a Dr asks if I am nauseous, I can tell them. And if they ask if the drugs are working, I can tell them. And every bit of good info you can give a Dr, and yourself, is a step in the right direction.

So hopefully we can avoid any repeat of last Saturday night's gut party, with it's intestine-slamming bass beats and its bile-spitting treble tones peeling back the drywall and warping the floorboards. Or, at least, that's how it felt for a while there.

The calendar looms, and with it change change change. This Phase is not as settled--there are shifts in the drugs and the schedules, to good effect and bad.

Good: Today marks the end of the pill-chemo Mercaptopurine for at least two weeks--no more daily two-pill pops that, while not as bad as any IV chemo, still cloaked me in a weighted feeling and added to the stomache unrest a little. Gone.

Good: no more self-stabbing for two weeks, and no more four-day-in-a-row chemo for two weeks. It will all come back in some form or another, but I have some time off.

Bad: 'Oh hello, Vincristine. Where you been? What's that? You would like nothing more than to slide into my veins, ruin my sense of taste, take a shot at balding me some more, and sap my strength? Sure, knock yourself out. Here, let me get in this chair and lay back so you can invade me with greater ease. Ready, dear?'

N noticed while editing blogs--my capacity for the speed-induced typo is legend and embarassing--that I spelled Vincristine with a 'ch,' like a girl's name, and now we both have an image of some hateful bitch who just wants to hurt me. I think N's protective spirit and her writer's ability to imagine have piled on, and now she really hates this fictional vamp with her slick demonic desire for damage. I am protected; well protected.

Good: Each and every day this week I have worked, doing some promo VO jobs Monday and spending time yesterday and today on an audiobook, working with employers who have been kind and generous with their time and patience.

Good: Each day brought greater strength, the capacity to visit other humans a bit, movies (A-team was stupid but a hoot, which is about my speed right now out in the world, and 'The Damned United' on DVD was a really amazing film, even if you don't like soccer...I mean, Futbol).

Bad: LIVE! DIRECT FROM HELL! THIS IS SPINAL TAP! Two more times. Thursday, Thursday, how I loathe ye.

Good: Then no more Taps for a while.

Good: Peg Apsaagenes, our old friend from early in the Protocol, which is the drug designed most specifically in this system to attack what I have. Though all the chemos do a job of killing fast-growing cells, I always felt best about the Peg, because it seemed like the closest thing to a custom job for me, so it is nice to have another shot of it.

Bad: Peg Apsaregenes, our old friend from early in the Protocol, is a very shit chemo, that not only stays in the system slowly un-Peg-ing for a long long time, but has a pretty solid kick that you feel for a while.

So Good and Bad: shocker. Life, broken into little boxes on a calendar and divvied up between the lovely, the horrid, the neutral, and the forgotten. That's not really any different than anyone else--perhaps a bit more extreme in shifts, but not really--so I will keep my yap shut and keep getting through it.

I have changed the workout I do in the mornings, having learned that I am still not ready for certain vigorous leg-raiser-y things, and I will set the bike up on the trainer in the next day or two--I have so many bike races DVR'd that I have to either get on the damn thing or fill up the hard-drive and stop taping anything else. I hit 150 pounds for the first time two days straight yesterday and today--in time for the next chemo: I think the up-and-down sine wave of weight will last throughout the protocol, but if I can keep 150 in sight then I am dong OK.

Thursday looms, but not until Wednesday unfolds, and this Wednesday I will spend some time out in the weather and the air! the air! pretending to be just like everyone else (haircut notwithstanding). And that is lovely, so I'll concentrate on that.

Bonhomie and bus trips

Sometimes no good deed goes unpunished. Sometimes a rough time is alleviated by a good time.

And sometimes you just mess up, make a mistake, and pay for it: nice and simple.

The day started with a reminder of the Rock-Star hour. The past few days have had their chemo hangovers, but every morning there's an hour like back on the ward where, lying in the bed, I feel like pretty much everything is as it should be, or as it used to be.

On the ward I often got up and walked my mile with that verve. Here I just feel nice and stay in bed.

Today I tried to gather it up, because I had a journey ahead of me.

I am the Local President of AFTRA: The American Federation of Television and Radio Artists (it's a union). I'm a National VP. My National President and my local staff and board members have rallied around us in this time of sickness like champions of the highest order, and I have been able to stay in touch and stay involved through a great deal of kindness, generosity, and time spent by people at AFTRA. It is a family in many ways, and I owe them one. Or many.

AFTRA's National plenary is this weekend here in NY. Normally I would have been at a half dozen committee and leadership meetings as well as the plenary itself. They have been wonderful in getting me into many of the meetings on the phone--I may be the only member to have ever made comments on a strategic discussions while simultaneously getting chemo dripped into his arm and then swapping tubes for a bag of blood. But maybe I'm not.

But today, as my medical needs left a hole in the schedule, and the plenary was winding down, I had the opportunity to swing by the end of the meetings and see people from all over the country I have worked with for years. Some of whom are very dear to me, and some of whom are complete frigging dipshits. But the fools are outnumbered; it is one of the strengths of this union.

Everything went well: subway trip was uneventful, met at the door to the hotel by staff members willing to take care of me. Sequestered outside the meeting so as to not be a distraction, and the allowed in to say thanks and hello to a good portion of the gang. I did not get to address or broadcast/journalist members because their last meeting was somewhere else, and that pained me because the broadcasters and the freelance actor-y types need to stick together through everything, but I know they understood.

I got to see good people I had not seen in a while, and I got to get totally wound into a strategic huddle with some of the leadership that made me forget the illness for a second or two here and there. Precious, like rhymes to poets and acid to batteries.

Then I was smart enough to say goodbye to my comrades and come home before I used myself up.

Mom and Jim were here,and N and Jim watched over me as I did my first-ever self-administered chemo.

The Drs and N and I have been trying to figure out how to avoid getting admitted over four weekends during this Phase...just for two little chemo drips.

Turns out that this particular chemo--Ara-C or Cytarabine-can be administered subcutaneously, which is a mildly fancy way of saying you can give yourself a shot of it.

During IV chemo yesterday I was 'trained' in self-inflicted 1 inch needles. Pretty straightforward, and any diabetic will roll their eyes that I am making such a fuss.

But, as I never went through that wacky 'heroin's a hoot, yeah?!' phase, I have never jabbed myself with a needle, so it is kind of a big deal to me.

Mom would rouse herself if needed, but with two others willing to oversee--one of whom injected her grandfather when she was younger, and the other who injected himself last year with a different chemo--mom felt it OK to not watch her kid stab himself. I get that.

So with the US tie against England in the World Cup as a backdrop, I popped a tiny little hole in myself. A The US team and I did not embarrass ourselves this day.

Long story short, I didn't take the anti-nausea pills before my jab. The jab went fine--a little shaky on the stab, but no big deal, and I was stupidly proud of the whole event. N tried to get me to take the Zofran, but I had decided on the ward that Zofran didn't work on me. I am a macho fool and rejected Zofran as not for me.

I was, how shall we say, wrong.


While I still felt actively not-good some of the time, I had never thrown up. Somewhere in the neighborhood of 48 days since initial admission to the hospital and I had not hurled.

Well, check that bugger off.

I will not go into the details--why stop now? you may ask, but, frankly it is still a little fresh in my mind--but 6pm to 9p weren't much of a party.

While Mom and Jim were riding the Bolt bus to Baltimore, I was driving the porcelain bus through the parishes of Misery, Tissue, and Drool.




But between N's calm use of her experience as someone with a less-than-iron stomach, her dad's advice and two calls to the great NP who didn't mind being bothered on a Saturday night, we got some Zofran (my favorite drug ever; did I mention that?) into me and now it is 11 and I am slurping soup and dreaming of dreaming.

So, some good and some bad in a day. And a lesson learned. The hard way, but those are always the ones you remember the best.

Learned something new today.

Brief back-story--since last week's LIVE! DIRECT FROM HELL! THIS IS SPINAL TAP! I have had the lower-level Tap headache. It went away sometimes, especially when I was lying down, but not totally, and always came back.

I woke up this morning, admittedly dreading going in for more chemo and yet another Tap--the 4th in six weeks, I think. During the second-to-last wake-up-to-use-the-can event (my nights are divided by three-hour or so awakenings to maintain fluid equilibrium, as it were) I noticed that the headache had come back, even though I had spent the previous six hours on my back. Not a bad headache, but a headache.

So I was of a mind to cancel the Tap for the day if possible, maybe postpone till tomorrow like last week, or something.

I was also very in my own head and in my own way, getting so worked up about the impending trip to the hospital that I couldn't finish my oatmeal. For those of you who know me--especially if you have known me since I was a kid--you know that anything bad enough to keep me off my Quakers is bad indeed. Pouring the Maple Brown Sugar goodness into the toilet--because all true oatmeal-ists know the sink is no place to dump it when you have more than a little left over--I started feeling sick, and it was dread, not nausea.

A note to people going through bad things: GET THE HELL OUT OF YOUR OWN WAY. If this illness has taught me anything it is that there aren't many things more damaging and dangerous to my health than chemo, but that I am one of them. My capacity to get and stay in my head can exacerbate situations way out of any normal range.

The scariest moment I have had--shorter-lived but painfully more unnerving than A-fib--was my just-home freakout of a week ago or so. Totally internal. NO physical truths on which to have based it. NO real crisis. And yet I was soaring on an adrenal tsunami of my own making and spiraling like a barnstormer with shattered ailerons. FOR NO REASON.

If you have the time to learn a new skill you hope to use in times of trouble, it should be How To Talk Yourself Down.

OK, lesson over. Sorry.

So I leave the apartment this morning on the wings of a lesser but not insignificant head trip. But Mom and Jim are driving me, giving N a day of rest she greatly deserves for shepherding me through so much for so long. Part of what keeps me even a little chill is the thought that she's asleep, getting rest, recharging her batteries.

We get to the hospital and I check in, get bled, and go to see the Nurse Practitioner under the lead Dr. She writes up a piece of prescription to the Tap people upstairs mandating that hey don't take ANY FRIGGING fluid from me: only put chemo in. The headaches are possibly caused by too much coming out over the weeks.

Also, the bloods show I am a little anemic, which may also explain the headaches and negative feelings. So I will get a unit of blood with my IV chemo after the Tap.

Then I got to the IR Tap people, send Mom and Jim off for the two hours it always takes, get dressed in the goddamn gown.

31 days in-patient and I never wore the gown, never had to wear anything other than my own heavy metal t-shirts and gym shorts; but NO! In IR for your Tap you have to wear the ass-is-out gown, and the engineers'-cap-striped robe, and the show-everyone-your-willy scrubs, and the don't-fall-you-frail-sick-dipshit socks with little rubberized treads on them. Good times. Good times.

OK, in to meet the guy who will Tap me. He and the nurse are dismissive of the theory that ANYTHING their department did could cause the headaches, and dismissive of the possibility that something as regular as taking extra fluid for cytology and tests could be bad. Dismissive, in fact, of anything not deriving from...how to say...them.

But they respect the prescription from the NP, and they respect the fear on my face. So they will not take any fluid, and the Tapper will check to see where they Tapped me last week and will actively avoid that area--I had told him of my fear (GET OUT OF YOUR OWN WAY!) that there was a section of my spinal column that now looked like a wiffle-ball from all the taps.

Careful what you wish for.

I go in, get laid out on the tech-geek moving table. I get swabbed, numbed, prepped, and x-rayed for needle location. All is going well.

Careful what you wish for.

He starts the needle. I feel very little--he's good, has numbed me well and has a light touch.

Careful what you wish for.

I have learned how their hands move, so I know that these small light touch-and-remove motions are him slowly placing the needle deeper and closer to the column before the slightly stronger push needed to pop through. You know, the horrible moment.

Careful what you--

HOLY SHIT WHAT WAS THAT?!?!?! ZZZZZZZZZZZZZZZZZZING!


The only way I can describe what happened next is that in the time it takes a good day to turn bad or an idea to turn out to be bad, some evil sprite has attached jumper cables to my left hamstring and clicked them onto the terminals of a fresh 12 volt source. From the base of my spine to the bottom of my left foot lights up and crackles. I actually thought I heard crackles (I did not).

I, amazing to myself, do not leap up and run away with a needle sticking out of my back. I tense, I inhale rather abruptly, and I begin nattering on with
What was that?!" and "What just happened?!" in what I can only assume is a barely-controlled yell.

The Dr, who didn't hear crackling and didn't feel like his ass and his heel sent each other messages via white-hot wires, stops and asks me what I felt. I babbble, but seem to get the message across.

He says it is transient, and he's right. It ended before my terror even finished blooming. He tells me it happens some of the time.

"Oh, I must've hit a nerve root."
"A what. What's that?"
"Its a...how 'bout we finish and then I'll explain?"
"...OK."

The spinal cord ends about 5 Lumbar from the base of your spine. Dangling in what I can only imagine is a gloriously beautiful way from the bottom of your spinal column is the Cauda Equina. This is Latin for Horse's Tail, and it is a swishing and swaying cascade of nearly invisible nerve roots that extend down along the rest of the column and allow nerve info to travel to the lower half of the body.

In needling me higher to avoid my wiffle-ball fears, he went into an area more likely than below to poke a nerve root.

And he did.

Be careful what you wish for. GET OUT OF YOUR OWN WAY.

Most of the time the needle slides past a nerve root, but sometimes, when genius patients make suggestions, you get to where a needle just jabs a beautiful raw nerve minding it's own tendrilous business and floating in the fluid of your sensation.

And then, pow; sonofabitch, you are awake. Awake like you have never been.

As they lowered me back to flat, it popped one more time--a slightly shorter blast that only went through my thigh but was equally alive and devilishly magical--and then it was all over and I had chemo in and no fluid out and it was off to lie on my back for an hour.

And then I went back to the land of the living and got a bag of blood and my IV chemo and was home for to see N for dinner--beef teriyaki and my numbers are good enough for Medium, though still, sad sad sad, not Medium-rare.

One more down, another lesson learned. And after all that, I feel OK, and the headache is lurking, but farther back, deeper down. Success, progress, more giddy medical hi-jinx to check off the list.

Holter Gets a Holter

Born in 1914, my great uncle Norman 'Jeff' Holter
was a really, really smart man, who went to more universities than most families, was involved in the nuclear tests as Bikini Atoll, and was awarded the Associations for the Advancement of Medical Instrumentation's coveted Laufman-Greatback Prize for his contributions to medical instrumentation.

This is because he invented the Holter monitor, a portable electrocardiograph device that revolutionized medicine by allowing people to get long-term heart monitoring without having to stay in a hospital. He also donated the device's rights to the medical establishment.

Yesterday I got a Holter monitor installed. It has been a long long road, and I had to get leukemia and then snap my rhythms and go A-fib, all to get strapped into the four-pad ticker-tracker that bears my family name. All so that I could make double-Holter jokes.

...not sure it was worth it. But Holter was wearing a Holter for 24 hours. Holter in a Holter! Isn't that hilarious?! Seriously, that's funny, right?

OK, imagine you're as narcissistic as I am, and just hearing your name said aloud kind of thrills you...now it's better, right?

Yesterday we met with a cardiologist. We had not had the best experience of cardiologists: a couple literally ran away before we were done asking them questions. A couple others didn't show up when my heart was cracking in the first place.

So our hopes weren't all that high, and then this guy, in an office a few blocks down the way from the hospital, is like a walk-off longball knocked out of the park by the cleanup hitter. He took a while to see us, but I think they make you promise that when you are bowing naked to Hippocrates at the 'I'm a Dr now! Screw You!' awards dinner or whatever they do to make Drs.

But once we got to him, he was thorough, and thoughtful, and listened, and formed opinions that seemed backed by his questions and our experiences. N asked him 'one last question' six or seven times, and he was ready for more. And his walls were adorned with the oddly genius paintings of his young daughter, whose capacity for early perspective and color matching to nature were, frankly, a little friggin weird.

And the long and short of it is that he thinks that the A-fib is more than likely behind me. It was most likely caused by the mixture of chemo, leukemia, and my exquisite capacity to get myself stressed out. Oh, and chemo. Did I mention chemo?

He took me off the no caffeine/no chocolate/no drinking-but-who-cares-I-don't-drink ban. He took me off the heart-slowing medication. He put a Holter on Holter (get it?! A Holt--oh screw it).

He sent us home, and we managed to cross one of the worries off our list, at least to the extent leukemia allows--the A-fib could come back, but if it does...well then, it does, and we'll deal with it. A Dr who made us feel at ease told us not to worry about it. So we won't.

And today I went to work, re-established some of the shuttered masculine silliness that drives me, brought home a little bacon, felled a mastodon with just a spear, a hyena loincloth, and my wiles (OK, I'm not sure what that last part even means).

I did three hours on an audiobook, union-covered and vocally acceptable. I could hear some quaver, I could feel that I had 95% of the acting but only 85% of the voice. But it was acceptable as a start, as a building block, and I can take that for a first day.

There will be more.

Tomorrow, in fact, and I will probably spend more time at the mic. So we're going to bed, me with a less-regulated heartbeat and a less heavy heart. Thanks, doc.

Fight song.

So this new chemo is something of an ass-kicker. And now that we are home, the sense of myself as a medical dumping-ground has grown. The pills at the altar above are, save one, just secondary drugs--prophylactics (tee hee), side-effect counters, heart regulators-- and not the real chemo. One chemo is in pill form, the rest are IV to the vein or spine and done in hospital.

And there are new challenges.

Either the number of LIVE! DIRECT FROM HELL! THIS IS SPINAL TAP1s has caught up with me, or because the fancy pants super-official boys-and-their-toys Radiology Geeks did a crappier job than the harried, do-it-by-hand female PA's upstairs of tapping my spine; I am not sure which, but now I have Tap Headache #2.

There are two Tap Headache options:

1--Skull-splitting agony immediately after Tap. Patient is likely to request a bullet to the brain as aspirin. Feared universally: why they make you lie down for an hour after a Tap.

2--Low-level, never-far-away, light-sensitive headache that slides from temple to temple like the eye-lights on Cylon Warriors and the Knight Industries Two Thousand. This headache is not permanent: it only hits when you are Not Lying On Your Back. And it has only lasted Three Days.

Granted, I think I prefer the #2 I have to a #1, but it has still made the concept of a few days recovery less likely.

It has also made keeping up with email and blogging a pain, as I tend to be both staring at a bright light and Not Lying On My Back when I am on the computer. Right now my head is as far down the arm of the couch as my head can be without losing sight of the laptop, and I am still dancing in a twilight of head pain and temple-tension.

On the upside, this round has kept me closer to myself. There is no pred or steroid of any kind. While that means that I do not have the jazzed and junked hormones that were a buffer to the brutality of the last chemo, I am rarely if ever in doubt of who is at the wheel in my head, and that is worth a great deal to me, and to N. There are still hours when something like a pred stalactite ('stalactites hang tight to the ceiling, stalagmites might get there!') breaks off and swirls into my system and I jittery and hungry and easily riled, but for the most part I am me again, for better or worse.

And the side-effects (I have yet to find a reason for them to be on the side: they seemed like everywhere-effects to me) this time around are more purely physical: head pain, nausea, straight-up fatigue. I pretty much slept through Sunday: how was it?

I have not seen the grey come roiling at me like the oil plumes that BP's greed-whore planet-raping scumbag corporate murderers unleashed on us because one more fail-safe cost too much. I have not felt the grey creep up on me.

I have been me. Hurt, beat, tired, sick. But me. And that's good. I'd rather be me, home, in a tough spot, than some queasy greasy reflection of something mildly resembling me railing against another sleepless night on the ward. Any day.

And the chemo and protocol seem more beatable when they are just attacking your body, and not your sense of self. I remember how hard the battle was with the Red Devil.

The Red Devil, literally, broke my heart. That's a lot to take.

But you know what, you little Red sack of shit? My heart is strong. My heart is so much more than the 100,000 or so (yes I did the math) cracked beats it gave you over those wretched 28 hours. My heart has history, and N, and a future we are fighting for. Fighting through the grey last time and the pain this time. And if you think a little A-fib, a seething skull, and the desire to hurl for a week straight are enough to stop me wanting to get past this, get past you, get goddamn better, then, to quote my leather-clad Metal God talisman, "You got another thing comin'"

Phase one was a nightmare, and Phase two is looking to be a pretty tall glass of crap, too. But the body endures, the mind erases, the night comes, and the dawn has just enough birdsong, even in this city, to make you happy you woke up. Every friggin' day, to start feeling like shit again. Because every day is one day less in the trenches. Every day is one more day when you allow the poisons to get in there as deep and as burrowed as they can and smoke that cancer out if its hole, to use the words of our dumbest president to better purpose.

Every day is a day you ain't dead, a day you are getting better by feeling worse, a day farther along on the blue line on the Google-map between Here and Cured.

So Phase two has its charms, as it were. And N is learning them, and I am learning them, and we will get them figured out. And then they'll be behind us.

Left foot Right foot. Repeat.

Oh, right, I remember: chemo sucks.

This always struck me as one of the ballsiest titles of anything, ever.

And now, I get it.

Thursday we hied our happy, both-normally blooded selves back to the hospital for the beginning of The Next Chapter. And a lot of it was different. Almost all different drugs, in a different dose, at different times. And I guess the most different part is that, over the course of 56 days the chemo sets change. For instance, I have 4 consecutive LIVE! DIRECT FROM HELL! THIS IS SPINAL TAP!s of Methatrexate on four consecutive weeks, and then no more for the next four weeks. Whereas I swap Cytoxan and Vichristine--the repeater from last time, wahoo!--during the 8 week course.

We are still getting used to the different shape of The Next Chapter, as well as learning what the new drugs are going to do to me.

So far the grey is gone, and it has been replaced with the much more old fashioned 'feeling like shit.'

Which is not necessarily a complaint, really. I recall very clearly--which is in and of itself odd, because so much of the low moments of the first phase almost immediately sort of settled into a soup of negative imagery that refused to stand out in specific detail--that when I was feeling the most grey and had the thickest layers of copper-tinged-blurgh flavor spilling off my tongue onto everything on earth, that I thought to myself and said to N that I wold have rather just been hurt. Pain I can look in the eye, I can clutch the edge of the bed, I can be macho. Or, quite possibly, not; but at least it is concrete. Whereas grey and tasteless are sort of amorphous ailments, and extreme fatigue is just so overwhelming.

But the first day was intravenous Cytoxan with a litre of saline for fluid, IV Cytobarine, plus 6-AMP Mercaptopurine in pill form, and a little IV anti-nauseal.

In short, a nice tidy cinder-block to the face.

But it didn't hit while it was happening. And even pretty late into Thursday night I felt OK. I had gotten a strange flush and a weird sensation that I had instantaneously gotten a sinus infection during the chemo--this is apparently something Cytoxan does, which is kind of impressively odd.

Baltimore pals were hanging out Thursday night, and we were all having a good visit, and then I got less valuable to the conversation, and then it started. Mainly headache and difficulty focusing. I just became a tree stump.

And I didn't really sleep. Cytoxan has the lovely side-effect of possibly making you bleed into your bladder--gee whiz, Cap'n, really?!--so you are not only jammed with extra fluid while they dose you, but you are supposed to pee as much and as frequently as you can.

Which, of course, doesn't work out. The bladder gets angry at the weird crap you are pouring into it, and to re-purpose a George Carlin line about how the body works:

"And your throat closes up, because your throat knows your mouth is crazy, and will eat anything.."

So the first hours after the chemo your bladder grumpily manages to give you just enough dribblage to keep you wandering to the can and leaving frustrated, trying to figure out where the hell the enormous bag of saline they dripped into you has gone and hidden.

But there was no blood, so happy happy happy.

And there was also no sleep, or not much. Between getting up ever couple of hours to try and make sure a river runs through it, as it were, and just having all these new poisons in my system, I didn't sleep and N didn't sleep because I didn't sleep.

Which made getting up at 6:30 to go back to the hospital for the Tap and the second day's dose of Cytobarine something of a buzzkill.

I'll stop complaining soon, I swear.

So back we go Friday, and I get a whole new LIVE! DIRECT FROM HELL! THIS IS SPINAL TAP!

When you are not a resident patient, they send you to a different floor to IR, which is a radiology department that does lots of fun stuff, including popping holes in spinal columns with needles.

But, where, on the cancer ward a capable-if-harried Physician's Assistant just drops by, moves your lunch tray, and slides some steel into you nervous system, down in IR they are Mondo Super Official, and they have a Whole Different System.

You have to go to a prep area, get asked lots of deeply relevant questions like "do you learn best by seeing, hearing, doing, or all of the above?" (I swear that was one of the questions: I thought maybe I would have to watch one and then Tap myself next time.) Then you waltz down the hall--OK I didn't actually waltz--and lay face down on a table that moves you if they want you to move. They take x-rays of your spine while they set the targeting of the needle, and then they angle the whole table head-up to drip your fluid out, and then head-down to drip chemo in.

Very high tech, and I will admit that there seemed to be less discomfort. Though, as I said before, the thing about getting Tapped is not so much the pain as it is the sense of invasion. It never hurts much per se, but the knowledge of the metal and where it is and what some random sneeze could do just freaks me the hell out the whole time.

And because of scheduling and lost chemo and hectic rooms full of sick people--me included-the whole thing took a lot longer than we thought and, having left the apartment at 8am, we didn't get back till 4 or so. So the return visit from the Baltimore contingent got cut even shorter and it was 'bed-ways is rightways for me' (stealing from Burgess again) by 9:00 or so.

But it worked, for the most part, ad Saturday has bloomed with less nausea, and a need to eat to get back the pounds I dropped in the last two days.

Which is a nice indicator that The Next Chapter, as we thought, will be more up and down. Either one or four days of chemo and weakness and nausea, and then three or six days of recovery and eating and trying to get work done.

We are are up for it, and I think I can hack the yo-yo for as long as I need to, but it will be a different learning curve.

We go back to the hospital today to check in for the overnight stay--chemo today, chemo tomorrow, then off home till next Thursday, which I hope will feel like a nice long stretch of normalcy. We'll see.

This multi-day chemo thing is odd for me, but not for most. The greater percentage of people on the cancer ward were getting many days straight chemo and then either staying for observation and/or low numbers, or going home. I seem to be in a minority with my once-a-week hits. I just have to get used to it.

Spirits are up even though I feel a little stepped-on, because it is a clear marker that we have stepped into The Next Chapter, and that is what I hold dear: progress. If we got through last time and performed well--it is all, after all, about performance--then we can hope to do so again, and the only way to get to the curtain call is to stride the hell out on the stage and start doing your part.

So off we go.

Normal. Well, not 'normal,' but normal.

Returning to the hospital, even to go to a different wing and floor to meet with my Dr about progress and moving forward, is very odd. I got quieter and quieter (and more quiet, I guess) as N and I winged our way up the 1 line to Lincoln Center and then across town on the M66--a route she mastered in spades during our month inside where she was the one who had to go home and get the mail and keep our real lives going and stuff before coming back up to her cot. It turns out my car-sickness trumps the speed of a cab unless really needed, so this route may become somewhat familiar. But I'm getting ahead of myself.

So I am making less and less noise, just sort of clutching my water bottle and trudging to the far East Side, until N asks what's up in the elevator bay, and I tell her it is just bad coming back.

I realize that, to some extent, everything in this building was either painful, boring, or nauseating.

Not really, to be honest. We made odd prison-pals and met phenomenal Drs and Nurses and Nurse's Assistants and Physician's Assistants and the Pharmacologist on the cancer ward is somewhere between savant and savior in terms of her knowledge, willingness to share it with us, and empathy.

But all that positive is very very easy to drop out the back of your mind as the huge city-state that is the hospital looms out the bus windows and swallows you in its multiple elevator bays. Seriously: if they took the elevators out of the hospital it would be three row-houses full of sick people, and maybe a dumpster. Granted, a dumpster named after a generous Jewish benefactor and his wife, but a dumpster nonetheless.

OK, Jesus, I am even whining here, and the news is good.

So...the news is good. They bleed me the old fashioned way before we meet the Dr--no need to pop in a new rattlesnake when I won't get any chemo today--and we get the numbers while in with the Physician's Assistant, who is our main contact, a runner for the Leukemia Lymphoma Society, and a great broad.

My numbers are...normal. I am, blood-wise, just a regular schmuck. Just some plain John Doe who maybe could use a little iron in his blood and maybe had a cold recently. Otherwise, regular regular regular.

Which was followed by this between N and the PA:

"So, is he in remission?"
"Oh yeah."
"..."

A long pause as we took this in. I think we knew it--officially I have been in remission since the marrow report. But still, to be in the Drs office and have her just toss the 'yeah' at us like that: a blithe indicator of Phase I's success. Neither one of us knew quite how to react. I think N had the brains to say something like "good" eventually. I just sat there, feeling very positive but stunned.

Now don't get us wrong, we have our priorities in order: we needed to know certain extremely important things right away: when can we make out and when can I have salad?

Turns out now is fine. Neither the mouth of a loved one nor the microbes in (washed, clean) lettuce are concerns with my current numbers. So N took me out to steak and salad--SALAD!--right after our appointment, and the making out...well, you know...shucks...c'mon.

But we got down to business soon thereafter, because the machines of the Medical establishment have their schedules and their thresholds, and it is important to the cancer-killers to get me into Phase II as temporally close to the normalization of my numbers as possible.

So I start Chemo tomorrow. Which is fine by me:

A--getting started means getting closer to finished.
B--No rest for the mutated; I have no desire to let any cancer cell get a foothold because I wanted three more days to nap and eat.

I would like to take time during this pause to thank all the friends and family who have, in whatever way specific to each one, supported me and us in the battle so far. The hardest times were easier, and the longest stretches were shorter, simply because of the knowledge of everyone out there pulling for me, supporting us. For me, even trying to get better so people I care about will stop worrying is a positive push towards improving.

All BS aside: thank you. Thank you.

And now back to our regularly scheduled programming:

Phase II is structured differently but still ends up looking like chemo once a week. But it will be predominantly outpatient, meaning from home. There will be small stretches in the hospital because of scheduling more than anything--the clinic at the Drs office where most of it will happen this time around is closed weekends, so if I want weekend chemo I have to be admitted to get it.

It looks like, chemo-wise, Wednesday will be Thursday for this phase, which is about 2 months. That allows me a couple days to feel bad into and over the weekend, but then the beginning and middle of each week to hopefully feel good enough to go back to work, which would make me feel about as good as anything on earth psychologically right now. There are no steroids in this next Phase, which means my voice should stay my own.

But let's stop for a second on that little tidbit: NO PRED NO PRED NO PRED NO PRED NO PRED.

In short: yay.

There's still either residual pred running through me every once in a while or home-made roid rage being created by a confused adrenal system waking up now that the pred is gone, but I have been assured by N's dad and the Drs at the hospital that I am near the end of that, and I take them at their word.

Chemo was horrible. May be horrible again. But honestly, putting the pred behind me,at least for now, may be the best thing to happen so far. I would cry with joy, but I am getting back to my soulless emotionally flat-lined self, so instead I will just be very very pleased.

So the long and short right now is that a new frame for the fight starts tomorrow. I will go through specifics later, but for now I am resting up and getting ready for tomorrow; happy to be there, happy to take the next poison, happy to have the opportunity to have 'responded very well,' as the Dr said today.

I have tried this whole post to not use the beaten-to-death 'Once more into the breach...' quote because, frankly, it's too easy.

But for today, I'll take easy. Easy's good.