'Welcome to Paradise'. -Green Day

The second day In the hsopital is passing and so far things are going along OK. Of course, typing that will jinx me and a large section of wall is, I am sure, preparing to cave in on me at any moment.

This is our first return to a room we've been in before. In fact, this room was probably our longest stay. It was the quiet corner to which we escaped from Stefan after the marathon sixteen days In his addled presence. We met the lovely older couple here with whom we still trade notes in the clinic waiting room. Deeply Italian, they were the ones who were so tickled that the wife actually ate some of the macaroni on offer at the hospital. "I ate the macaroni!" she would cry out, and then giggle. She called her whole family and a few neighbors..."I ate the macaroni ( tee hee!) A very sweet woman. She'd ask how we were doing, and if we said 'ok' she would answer 'tangkgod' and she would mean it. Really mean it, but in an internal way; not pushing something on us, not dropping into some impromptu prayer session. She was just a kind woman and a believer, and her belief could not separate itself out from her kindness. I am usually hair-trigger to any of that ghost story religion mumbo jumbo, but she never offended me, never made me feel like her good wishes were an impositional demand that I follow her one and true god. It is rare when the kindness trumps the belief, and it made interaction with them--something we did for the final two weeks in the hospital during the brutal and crazed days of induction--very nice.

Our current neighbor is a sweet older gentleman who has lung Cancer along with whatever blood/bone issues brought him to this floor. He is extremely polite, listens to his tv as quietly as his aging ears allow, and snores in a prolonged and very bass mumble of English and Spanish. Because it is not staccato and high pitched and ever-present like my last creole curtain-sharer, I have found it easier to let his rumblings and crunchy inhales and bursts of somnambulant info-sharing go by the wayside, and so the needles of distraction, that were by this time in the last stint sliding hot and slow into the center of my cortex, are not really a problem.

He recounted a nightmare to his nurse this morning: in the dead of night, unable to sleep, he saw his mother, dead twenty years, walk across the room and wash her hands. She calmly asked him how he was, and then she walked away.

...that was me. I was just washing out a water bottle at the communal sink in the middle of the night. I think I may have said something to him. Maybe not. Actor's life aside, playing that role unbeknownst to myself turned out to give me a lively set of the heebies when I heard about it through the curtain. Though he seemed at least mildly comforted to have her there, so If I helped his rough night in any way, I am glad to have been of service.

I came into this round physically strong and mentally a little worse for wear. As I have said, the fear that this stint would be as soul-scratchy as the last, a long a drive down a badly-paved spiral road with crappy brakes and only republican talk radio to listen to, was growing day by day as the entry day drew near.

But my body was pretty solid. Fat, but solid. I weigh more right now than I ever have. Some of that is the change from muscle, which weighs more, to fat, which weighs less. So I was stronger and lighter, which meant I was in great shape. So not only am I heavier than ever, but less of that weight is something of which I can be proud.

Partially it is the steroid eating habits that I hold onto after the steroids have stopped making everything I eat disappear so quickly. When I am on the pred or the decadron, I manically eat and it manically disappears, but that only lasts a few days after each stint, and I just get unto the ultimate-meal groove and keep packing it on when don't need to.

I have shirts that ride my belly now, shirts with buttons that have peeper holes where they never used to between buttons.

It disgusts me. I was a wrestler and now I am an actor--some level of eating disorder, mild though it may be, is never far from the fore. I eat to feel good, my moods visibly lifted by movie popcorn and steak. I run as far and as hard as I do partially because it makes sense to my body and creates accomplishments that arrange and align the work for me in ways that strike me as deeply worth knowing and inhabiting. But I also run far and hard so that when I get back I can dive face-first into gravy fires, Baskin-Robbins sundaes, and bags of Utz potato chips bigger than my midriff.

It is a balancing act, and I can go months and months balancing correctly. But there are always pitfalls: two good movies in a row, three boring days alleviated by chips and salsa instead of books and running.

Oh yeah, and cancer. Weeks of hurling or wanting to hurl, finding single foodstuffs palatable for days on end and then discarding that love for something else on the spin of a twirling penny's shadow. Hospital food growing deeper and deeper into my psyche as a representative of all the pain and uncertainty until I find myself here this time barely able to eat anything, which of course puts more pressure on N to go outside and find something I might be able to force down.

And so you eat more than you probably should the last week before a stint because the assumption is there that you will not eat near enough inside while they poison you.

But that is as easy to abuse as anything else when you are someone who is made happy by food, and so you arrive at the hospital with the prerequisite extra bulge through the treatment, but with a lovely non-requisite layer of insulation over the first layer, and not a toned muscle to be found anywhere.

The chemathlons helped, and I will try and returnm to them more quickly than I did last time. The effort put out also makes you trend toward healthier snacks after,and creates a sense of accomplishment against the disease, the cure, and the softening of your whole body that tends to keep you away from the worst offenses of bingeing when you have the time to do so.

But there are also moments when physically fit people around you help bring you back to earth.

I run for BPTC--it stands for something but the name is pretty embarrassing so I tend to stick with the acronym. I stay less annoyed that way.

Since starting running in earnest in 2007, I have run the Knickerbocker 60k three times. It tends to fall right after the NY Marathon, and it's dumb American distance is 37.2 miles. So you have the somewhat rare opportunity to run a marathon, look down at your watch, and say 'ok, I've run a marathon, now I only have ten or eleven miles to go' or run 18 miles and think 'here comes halfway.'

It is a wonderful race, and it takes the kind of planning that most other races do not: you plan for food intake, liquid intake, shoe comfort, and a mindset about pacing that encompasses multiple, multiple shifts in thinking, speed, dedication, idiocy, and drive to cross the line in any kind of acceptable time.

The rather obvious chemo parallels here are not lost on me, believe me: many a session buried under a blanket of fear in my head have been salvaged by thinking about the endurance runs I have suffered through and come out of on top.

Or, looked at another way, running the Knick about a week after running the NYMarathon is just friggin stupid. I won't really argue that point much either, as it has a lot of merit.

Long story mildly shorter, I could not run the NY Marathon or the Knick this year. Three brave souls took it upon themselves to run the Knick alone, to finish the whole race for the first time--each and every year pals and teammates come out to run a loop or two loops of the park with competitors, but the whole thing is another enchilada.

And a group of BPTC runners signed up and ran the race as a relay in my honor because I could not this year. Humbling, moving, and an acceptably annoying reminder that I am as yet not ready.

But the schedule worked out and I was back up from Baltimore and had the joy of standing on a slight hill at one of the turns--it is an easy race to spectate because after an out-and-back to the corner on which we stood, the runners then complete nine (yes nine, like a guy missing a thumb) circuits of the inner, hilly loop of the central park road. So everybody comes by a bunch of times. It gets a little squirelly keeping track of who is on what lap, but you see them all, and they see you.

Members of our team who were walking over to join the cheering section got shouted thank-yous from runners because we were all in our gear and we were cheeing for everyone. It makes a difference in an endurance event to have a corner you know will be loud, a reason to pick it up, something to look forward to.

And I was there all day. A few of us did the whole race, from Chad's solo finsih as first for our team, through Rina's strong second accompanied closely by the last set of relayers, to Vanessa's stealth personal triumph--she kept her intention totally secret, really planning and running just for herself; a race like this is a great kind of mission for that type of self-discovery. With prep and group meeting we spent around eight hours on course, handing out water and Gatorade and gu and pretzels to our runners and a few others who looked like they needed it. We have ample time to nickname the runners begging to be tagged: 'man-boobs' and 'natural sweater' were always within a mile of each other, 'perma-smile' never wavered with her pearly whites all the way to the the end. 'Whoo-hoo hand slap' got a lot more quiet and a lot less violent with his high fives as the miles ticked over. 'Tractor trailer' never figured out how to take our turn without swinging way way wide, and still almost crossed the white line when he got onto the straight. We made a cast of characters, and the clapped and hooted and willed them across the line.

Unbeknownst to me BPTC raised 1400 bucks in their efforts, donating 600 immediately to New York Road Runners Youth Running initiatives, which is the group behind the TFK team from which BPTC was born. Then they want me to decide where to put the other 800, and, in speaking with the other Charity Whores (an official team board position shared by three of us) I will happily make a choice.

The few left at day's end hit a nearby diner and didn't mind the carbs. We talked for a while, and then hobbled off in different directions, some of us sharing subways until we peeled off at our respective stops and went home, chilled but warmed by the event, the accomplishment, the camaraderie, and having done something on a cold Saturday morning much better than sitting in a couch alone eating Bon bons, or having chemo tingles run up and down your body.

And now I am back in the joint, rattlesnakes humming away with Cytarabine and Bicarb and Methatrexate. My hemoglobin count is hovering at the 'do we give him a bag of blood?' level, but so far nobody else has needed to give me a pint of their finest. This is the Hyper CVAD stint where I have to sign my name before and after each chemo that might creep into my brain and, aside from a consistent desire to sign different names and flail and drool when they give me the pen and paper, all seems to be going well.

Returning home to the false high of the Neulasta and the cliff-drop of my numbers will, as always, be an extremely unpleasant experience. But N being home and the level of care and preparation on the part of the day nurse has put us much more at ease than the last time, and so I think that I will exit the city-state this time with my head higher, and my shoulders only bowed because I will have enough strength left to carry N's cot as well as at least one of the backpacks. And that initial feeling of being useful, being more than just the invalid, will hopefully get me through the next week with that much more oomph, that much more pop. That much more me.

For what are you thankful?

Oh gosh. That's a loaded question. All the time loaded, but especially on Thanksgiving, and even more so from my current position. So let's get the big answers out of the way, shall we?

On this Thanksgiving day of November 25, 2010:

-I am thankful that I am not dead.

-I am thankful that I am not a turkey.

Though, come to think of it, the second one kind of fits into the first. Ah, well.

The above photo was taken earlier today. N and I discovered that we would not be going into the hospital over Thanksgiving, as we had thought, but were being pushed to the day after--nothing worth noting, just scheduling, really.

So we decided, as it was last minute and we would be heading in soon thereafter--very soon, it turns out, as the hospital called tonight and said we could get there by 8:30am tomorrow--we would just lay low and prep for the chemo stint that was rushing towards us.

We therefore followed up on a bit of 21st century chatting we had been doing. Which is to say, a series of emails we sent each other from separate rooms in the same small New York city apartment a few weeks ago. Every time we do that--and it happens a lot, as I assume it does to many people--I feel a little weird. I could raise my voice--I do it for a living--and point out something I found online to her. She could mention as she walks near me on her way to the bathroom or fridge that she saw an interesting article.

But no. We email links and observations and pleasant greetings and thinkings to each other...from thirty feet apart. Silent, engrossed in nothing but dolled-up zeroes and ones, hypnotized by the screens that stand between us and the real world. And perfectly happy, I guess, because we also take walks and talk to each other or other people; leave the apartment alone or together to interact with nonfiction, non-digital truths lurking everywhere outside the ether. So we're OK, I guess.

Anyway, I saw an article on the AOL homepage about the fact that the 6 train on the east side of Manhattan uses an old station-stop downtown as a turnaround before it begins its trip uptown. If you take the train to the end of the line--a romantic notion in just about any situation...or morbid, I guess, but there's often not much difference between the two--and simply exercise your right to not get off, the train will screech around a tight bend and head back north.

And off to the right at the tightest part of that screeching left turn sits a silent, darkened, short subway platform, with the words "City Hall" sliding slowly out of the gloom on the left, hovering in a dusty kind of visual quiet for a moment, and then creeping off to your right.

I know this because my email to her "hey, do you want to do this sometime?" was accepted and responded to "yes. that sounds great." and remembered "Hey, do you want do the secret train ride you sent me that article about a couple weeks ago?"

Why yes. Yes, I certainly do.

We walked from our place, got some lunch, went to Union Square, and took the 6 train...to Union Square. OK, actually we cheated: after the slow and lovely empty-train ride past the ghost station, which was no less wonderful for its fleeting snip in time, we became impatient NY residents again and hopped on the 5 back up to Union Square, skipping Canal, Spring, Bleeker, and Astor place as if they were nothing at all. Then we transferred to the L and went home, as it had started to rain and so walking back west held less pleasure.

Then we had dinner at a French place that was packed with other versions of calm, if displaced, Thanksgiving participants, went home to watch a DVR'd Masterpiece Mystery, and are getting ready for bed and an early rise to go into the hospital.

Which has been lurking just behind me like Death in Catsañeda's "Journey to Ixtlan." Just lingering there, out of reach, edge of vision, wavering, flickering, ever-present.

I started getting scared days, maybe weeks, ago.

After the fantastic 5K and weekend, I had a relaxing and wonderful week in Baltimore. I ran a 2.2 mile out-and-back from the front door of the house I grew up in to the back door, through the park I walked through to go to school. I did that three or four times that week. Slowly, huffing and puffing, hairless head steaming.

I went to the clinic Jim uses; met his Dr and his chemo nurses, and was cared for in substitution by his team while I was in Baltimore.

It was fascinating how everything they did accomplished the same goals but was completely different. Different rattlesnake, different saline-draw from a different bottle into a different syringe, different barca-lounger, different tone. All adept, all done with great care for procedure and patient, but with a sense and rhythm and look unrelated to that which I have grown accustomed. I had not realized until then the extent to which hauling ourselves to the city-state of a hospital, getting jabbed by the same woman (as her with-child belly grows to prove and insist upon the passage of time), sitting in one of the same little rooms, standing on the same scale, and waiting for the same Drs to tell me my fate for the next little while had become part of the fabric of the days, something I cling to without knowing.

I'm a creature of habit, likely to a fault. My mother and wife are almost incapable of eating popcorn near me because of the insanely specific way I scoop out a handful, jostle it into place with the same number of shakes in my hand, and then toss a pre-set number of popped kernels into my mouth, with the same rhythm and the same timing, until the huge bowl is empty. When it is time to wake up, I rise to get the tea started, get the pills down, and get seated over whatever breakfast I have chosen in time to watch NY1 do their 'In the Papers' bit, which happens at 43 minutes after the hour, right after the Stock Market report and Weather on the Ones. If I miss 'In the Papers' it's a good chance I'll feel cruddy most of the day, chemo or not.

Repetitive motions, repetitive actions. Left, right, repeat. There's comfort in knowing what comes next.

Especially these days.

So the Baltimore break from routine was both refreshing and unnerving. N had a very good residency in KY, which was good for her and good for me to know; I could hear from the first phone calls that things were going to be low-key and pretty smooth, and that made me feel better.

But by the end of that week I was already thinking about the chemo. Coming off the psychological obstacle course that was the last stint, I knew that I would get nerved up about returning to the mechanical bull bed long before it was time to do so.

And I was right.

It will be a relief to get there tomorrow even as I dread it typing these words out, just because at least I won't be able to feel it looming any longer.

I'm tired. N's tired. It has been a long haul, a rough slog, up and down and up and down, and sometimes down and down.

And it is not over, by any means. Even a picture-perfect roll-out of the last stints, which would have me off the first-round chemo brutality as the New Year announces itself, is still only the curtain falling on one piece and rising on the next. Two and a half years of maintenance--much less of an attack on the system, much less of a wrestling match with mortality and fear and the bottom of murky internal seas. But still: two and a half years is nigh on three times longer than we've been fighting so far.

So it isn't about being 'done.' I have taken Jim's advice as much to heart as possible, terms of not getting ahead of myself. Usually it works. But as the 'end' of the first bit of this war gets closer, it becomes harder to stop shading my eyes from the sun, squinting down the road, and trying to see what may rise out of the heat-wiggles and shimmer into frame, roaring toward me, no brakes, full throttle.

In Baltimore and since returning I have worked some, rested, ridden the bike a bit, gotten caught up with N and enjoyed quiet time in her company. And sensed the shadow of the next stint. First as a peripheral nagging, an edge-of-vision blur. Then creeping into the frame of everything I see. Then closing out the regular angles of what happens day to day. And finally dropping across my eyes like a fighter-pilot's visor or Luke Skywalker's blast shield, so that everything I can see has the taint of the stint. At that point you just want to get in and get it over with, because you can't get out from under it any more.

The upside to being so owned by the chemo schedule is that you have certain way-points you know you can't fight, and in a certain way those replace the earlier repetitions and certainties that calmed and guided me when I was just me, and not me-with-cancer.

So in we go, for the second part B, to be followed by the second part A, and then we're done...sort of.

At months 6-ish and 13-ish of the maintenance they want to hit me with an A and a B once more. But that's a ways off, so I won't think about that.

Think about what?
I don't know...get it?

So in we go, for hour after hour of Methatrexate and Bi-carb, Ara-C, and signature checks, and the ever-present Vincristine, hanging around like a new bride, hardly to be shook off (another Bard moment for the theatre nerds).

So for what am I thankful?

Everything. All of it.

Friends and family, wife and Drs, pain and sorrow and fear and entanglement in tubes and poisons and schedules. Agony, terror, the tears that stream from my eyes all day now because I don't have the lashes to stop them anymore.

Because, unlike a shitload of turkeys today, I am not dead.

I. Am not. Dead.

Happy Give-The-Natives-Smallpox Day, to you and all of yours.

Running, not stoppping...then, you know, stopping eventually, or whatever.

OK, the race was a great time. I have checked, and nothing important fell off me. So success all around.

We roused ourselves from or throne (little Shakespeare joke there for the theatre nerds) and wended a caravan down to Alexandria, Virginia on the fine Saturday morning.

About 85% of the way there we were stopped on the highway as police cars and an ambulance crowded around a tiny black two-seater sports car that had clearly barrel-rolled through the tree-thick median scant minutes before we arrived. Whoever had been in it was either already in the ambulance, still bouncing through the foliage, or not extant in sufficient quantities to collect onto a gurney anymore. One tree as big around as my leg had been shattered right through the middle and was just a shredded stump about three feet high. The car looked like a black pencil that has been chewed in frustration.

Speed kills. Or a great omen that a bunch of people using their feet to get from A to B was the way to go. Or, as is often the case in life, both.

Though the tally may creep up a bit, Jim's team raised right around twelve grand. He was given an award at the pre-race for raising the most private money; meaning he didn't have a company sponsor: just good people, friends, and family. Many of you donated through this blog to that, and I am very grateful, for myself, for Jim, and for anybody suffering from Multiple Myeloma who will be helped by the research, development, and awareness funded by your gifts. Thank you very much.

Of course, Jim said he would match all the gifts, so your 12K will be 24K, which is really wonderful. Jim is currently outside, wearing a beer barrel attached to suspenders, selling apples and match-sticks on the corner. If anybody has chores they need doing, his back is pretty strong and he's a hard worker, so let us know.

Some genius putz donated through me using the name "IP Daley," a level of humour so childish that I am still laughing. Who says you can't be in Third Grade forever, right? Whoever you are, I hope you enjoyed your signed, first-edition copy of "Bloody Balls" by Rusty Zipper as you went to sleep that night. It would only be fitting.

The Kiss Myeloma team had about twenty members, and Jim's fund-raising earned us our own tent with the team name across the top. So it was with calm pleasure that we gathered together at our tables under our tent and allowed the sun to very quickly turn the 45 degree morning into a 60 degree morning.

I know this will sound snotty, but it is true: in New York, we race a little harder for stuff. There are simply too many people in New York races for them not to be planned and executed with a high level of precision. As often as not that is annoying, with some random race volunteer becoming a safety-vest nazi and the repetitive cries of "stay to your left! Runners to your LEFT!!" shattering the beautiful Central Park morning.

But I am used to it, I guess. So when the DJ--yes, the DJ, cranking pop tunes off his Macbook under the tent next to ours--announced that the race would start in five minutes and would everyone who was running get to the front and everyone who was walking get to the back, I was not really prepared. This was not the NY-style fifteen minutes in your assigned corral, doing asinine calisthenics to try and psych out the dipshits next to you, blowing on your hands manically as a way to try and forget how badly you need to pee.

This was a bunch of people awake on a Saturday for a cause, collecting on a side-street near a movie theatre parking lot in Alexandria, Virginia. Which, once I got over my smug Manhattan attitude, was really kind of nice.

I made my way to the front of the line. OK, 'line' isn't really the word. The front of the...three women in matching MMRF windbreakers standing in the middle of the street holding their hands out.

I went to the front out of habit. Blew on my hands out of habit. Looked around me for someone I would compete with out of habit.

Then seven 9-year old boys bounded past and toed the line, right in front of me. Giggling, talking a mile a minute, nudging each other, wiping grubby hands across dangling bangs as they barely, barely held the power and sproing of youth within bodies draped to the knees with MMRF Race For Research t-shirts, odd tunics with sweatshirt hoods popping out the top and barely-laced basketball sneakers peeping out the bottom.

Hmmm. If only I had a scythe. One good swing, about hip height, and I would have open road when the race started.

That's what the pale, bald, going-soft nut-job behind these boys was thinking. The hairless weirdo with the big kissy lips on his shirt. If I had been their moms, I probably would have whispered "Thomas, Gideon, stay away from that man behind you. Just move over here towards Sarah and Alicia, OK? Give that man some room, OK? Please?"

And then the gun sounded. Seriously, a gun. Some random dude off to the right held up a starter's pistol, and there was a crack in the morning air, a puff of smoke, and at least forty people all went "Oh!" at the same time, caught blissfully unawares. We were off. It was great. It was a race put together for non-racing reasons, and everything about it was beautiful.

The insane children flew away from me like, well, like they had finally turned around and seen me looming and depilated behind them like some Boo Radley in short shorts and sneakers. They moved near the speed of light, pushing against each other, themselves and their ridiculously long shirts, and were out of my frame of vision in an instant.

And then they were back. I had forgotten that kids are like dogs: mostly sprint. Literally a hundred and fifty feet from the start line I passed every one of them; they were panting, one was crying, having locked his legs together under his tunic-shirt and taken a dive right there in the middle of the street, face-planting to the glee of his brethren and, I am sure, the terrified chagrin of his mom.

Their forward lightning had scattered and was now equally lateral. They had gone from a streaming V of kid-geese streaking towards the horizon to a group of agitated pigeon-boys waddling in the middle of the street.

So I passed them, and that was nice.

The course was a straight out-and-back on one wide road. About a hundred yards along, the road reared up in a horrific overpass to clear the I-95 on-ramp from which most of us had been disgorged an hour and half earlier. An elevation of probably 50 feet in less than 100 yards of pavement. It separated the men from the boys and the women from the girls in a hilariously efficient minute and a half of racing. I passed my first defeated person walking before I had even started to sweat.

Which was only because I had actually grown a brain, and was not running any faster that I was able. The first twenty yards I gave in to race-borne habit of past years, and I lurched off the line probably running a minute and a half per mile faster than I should have, and certainly faster than this current body could sustain for more than about a football field. But I settled in very quickly to the hopefully-ten-minute-mile-or-slightly-better I have been aiming for. Feet doing just enough to not shuffle, knees lifting but not any more than I could sustain, breathing a bit like a billows but a billows I could push and pull for the next half hour.

It was, in a slow, plodding, decrepit kind of way, glorious.

Running, once you have done it enough to get rid of your bad habits, is not about how fast you can go. That's sprinting. Running is about how fast you can go for the distance required. And to really do that at all well, you have to spend a lot of time on diagnostics: how do I feel? What hurts? What is strong? What might pop? What can hold me up today? Do I have it in me to speed up? To hurt myself but return again next week? To push as hard as I can without pushing past health?

For me, what has been such a revelation, such an addiction, about running, is that it boils down to this: I have to push myself beyond the limits and into a place where I am always just a sliver of fate shy of breaking: but no further. I have to find the edge of ability and pain and obstinacy and flesh; and I have to stay there, for as long as I can.

A year and a half ago in Boston that was running a marathon into a daylong headwind, up and over Heartbreak Hill, and across the finish line in three hours and eight minutes and forty-two seconds. That's a seven minute twelve second per mile pace for over twenty six miles.

Saturday that was not falling over, not getting in front of my breathing, and not stopping or walking at all, to finish in twenty-eight minutes and twenty-eight seconds over a 3.1 mile course. That's nine minutes ten seconds per mile.

So two minutes per mile slower over a course approximately one eighth as long as me at my best.

That is how far I have fallen.

And it was glorious.

Because I made it. Upright, running, even picking it up for a 'sprint' of sorts the last fifty yards. Not bleeding from the eyes, not limping along on hamstrings snapped like kindling in winter, not seated and weeping along the median strip at the two mile point, barfing on my bright yellow shoes.

When the going gets tough, the tough lower their expectations.

Because you have to. It is a higher hurdle to admit you are weak and work from there than to just push a healthy body further. I've done both, now. I know what I'm talking about.

Everyone on our team finished, the walkers and the runners. I was fourth, I think, of our group, behind a helluva good guy who is new to running and got a PR (Personal Record for you civilians) and in whose eyes I saw the hunger to go even faster that I miss and will feel again one day. Behind a father and daughter loping along chatting pleasantly to each other the whole way.

And behind a hundred or so other people in this small race for a good cause on a good day.

Jim ran the whole race as well, and was not bothered by the calf and Achilles issues he worried would hamper his run. He had a great day, too. My mother walked, with friends on either side, snapping pictures of people as they passed in the other direction.

And afterward there were brownies and bagels and Bloodies for the drinkers and Virgins for me and the kids. And laughter and catching up with friends, and a few more brownies, and we were the last people in the parking lot, still enjoying the sun and the humanity under our tent as the crew of laborers came sheepishly over to tell us they had to take it down now.

Sometimes, things just go well.

Fuck cancer.

OK, who wants to go running?

Just for the record; this shoe stinks.


DONATE HERE

It has been a slow but steady climb from the jangled nerves and weakened GI tract of the last stint, but I think we're getting back in line with the time-space continuum. For starters, since I am feeling better, N has taken on a nice sinus infection and is laid out on antibiotics: the seesaw, like the East River, just kind if flows where it will. We hope she'll get to feeling better before having to board a plane to Kentucky for her professorship. Planes and sinuses kind of hate each other--I have some image in my head of Sam Shephard getting a nosebleed somewhere during "The Right Stuff" that would seem apropos--and I hope she can get a little down time and rest this week where the weather looks to be a bit warmer and the hotel makes the beds.

Which leads to my imminent trip to Baltimore to be babysat by my mother and stepfather, but really, let's be honest...I'm a ringer.

Jim formed a team called "Kiss Myeloma" and things have churned up from there. The team has swelled to 16 members, I think. The team has raised some good money for the cause.

The shirt I am wearing in the above pic is from my Light the Night walk. It says 'Survivor' on the back. I have to admit I had a little trepidation donning (OK, cutting the sleeves off with the Leatherman and then donning) it before the Walk, because I don't think of myself as a Survivor yet. Not of my cancer. See, my slap-happy medical establishment has thrown this 'five years from remission' thing out there where they actually call you 'cured.' Now, being cured probably doesn't have a lick of anything to do with hearing every creak, feeling every twinge, doubting every breath, for however many long nights and stretched years to come. But they call it Cured and so that's the mark I will point at for my 'Survivor.'

Somebody call me on May 18, 2015, and we'll see how's tricks.

But Multiple Myeloma's kind of a different bitch. They don't have that 'cure' flag way down the road. They treat what ails you, and then back off and let you steam a little, and then treat what ails you again.

To likely bore you all to tears with a car-racing metaphor: a leukemia like mine is more of a "shit! we blew a tire and tore up the right side. Let's get some new rubber on there, tape up the gash in the fender, then get her back on track and see what we've got. Maybe we'll be OK, maybe a meteorite will hit us in twenty minutes." And Multiple Myeloma is more like "This car feels a little funny, like we're down on power. But it's a long race, so we'll keep an eye on everything and take swings at it when we have pit stops, and hope for a good strong finish."

So, as far as I am concerned, Jim could slip the 'Survivor' shirt on right now and just wear it through until he dies of something pleasant and singsony like 'a ripe old age.' That would be swell.

Anyway, that's just my view of the T-shirt thing. Back to me being a ringer.

I am planning on running the whole damn 5K of the Myeloma Run, to be held this Sunday the 14th in Virginia. I got back on my feet Monday with a mile and a half, whipped off a chemathlon today--besting my game but ballasted pal in so doing--and will probably do about the same for the second half of the week, before heading to Charm City.

Right now my goal is to break half an hour, which is just shy of 10 minute miles.

That hurt a little to write, but it healed a little, too. A few months ago I would have scoffed at the patheticism of hoping, fucking hoping for ten minute miles over a 3.1 mile course. I would have thought myself cheap, weak, not worth talking up.

But hey, guess what? Chemo has bigger fists than I do. I have a bigger heart, but fists...no contest. I have tasted a lot of my own weakness this past couple weeks, and am clawing back the bits and pieces as they come. And that in and of itself is a good game to be in. Duck, weave, take a breathe, lash out, duck, sidestep, run a mile, get some back for yourself. Swing when you can, swing for the fences, because your next shot may not come around for a while.

So I am going down there to run this friggin' thing. I will have clearance from my Drs--and here I pause to take in the true refreshment of having one of my Drs run Chicago in 3:41 and NY in 3:39 a few weeks later; Ha!--as to my health, and whether or not I can push a little or should just hang light. I will not be stupid.

Finish lines are not goal lines.

But if I can, I will leave a piece of myself out there. Because it is a race. Because I care about the man I am running it for, raising money for. Because there's no reason to try something and not give it a full shot. Because I somehow see it as holding up some end of some bargain--I do not know with who or how or why. But I do. I found this thing--this running thing--and it has made me feel better, and it made me better prepared to take the punishment of my own treatment, and it gave me something immediately to pin my eyes against the far blistering horizon weaving over the terror at the end of my chemo.

So I run with a purpose, if at all possible. So I run to leave a bit out there.

If you would like me to leave a little out there for you, and for a good cause, go here:

http://support.themmrf.org/site/TR/RaceforResearch/General?px=1481829&pg=personal&fr_id=1133


Jim--whose generosity I wish to emulate, but whose quiet I, by my nature, can do nothing but eschew--has quietly indicated that he is matching all donations. So go for it: break his bank; every buck you give is double.

That's all for now. I will leave this as the most recent blog for a couple days so people swinging by to check my less-frequent dribs and drabs will see the link and donate. that's more important than what I have to say.

Any day.

Rising, like a Phoenix, from the...uh...umm...couch, I guess

Chemo: "it provokes the desire, but it takes away the performance."
-Porter, Macbeth II, iii [though he was talking about wine. Same thing.]


It is quarter of 7 on Saturday the 6th of November. Zenyatta is about to be walked into her starting gate in Louisville before the Breeder's Classic, hopefully to beat the field and retire with the astounding race record of 20-0.

The least I could do is a post, after so long away, right?

Anybody tells you cancer is boring, go ahead and stab them in the neck with a fork. I don't want to reminisce yet because I somehow feel it is as bad as looking too far forward. But the only certainty so far has been change...and I guess pain. And terror. And loss. OK, lots of stuff, but you get the idea.

Zenyatta, a full 15 horse lengths back on the back stretch, put together the kind of final run that would have been remembered forever. If it had worked. But she lost by a nose. 19-1 is somehow a shitload worse than 20-0. Out to pasture either way, to be mounted again and again so silly men can live through horses, instead of going out and doing something themselves. I'll stick to chemathlons, I think.

This last stint was, to search for silver linings, the last time I will get a new experience--unless, of course, something happens. This was part A of the Hyper CVAD, and they swapped me around so that Part B was first. But now I have had all of the different drug and time-interval combinations they intend to hit me with, so moving forward should be better than the last couple months. 4 straight days of Cytoxan, then a happy gush of Devil, some Vincristine to send you off and some more at the end of the week just for shits and giggles.

And it sucked. I mentioned before about all the tweaking factors in the hospital, from new nurses to the multilingual chatter from across the curtain. But I don't think I knew how far it was digging into me until we got home. The first night home was horrible, just kind of an hours-long anxiety attack. I think I slept some, but it was the kind of sleep that is really just philo-dough layers of tension, never really a loss of consciousness. Certainly not rest. I had these dreams about different images in my head that felt--during the dreams and waking recollections of the dreams--like they were age-old. It seemed like a host of images that had been bothersome and scary to me over years and years were squeezing together into a ball, a roiling dream scene that repeated every time I was asleep enough to give in. And they were weird image sets:

1-Arnold Schwarzenegger, young and hale, in khakis and a backpack, scaling and leaping a twisted relic of a railroad bridge that has collapsed and was somehow hanging off Half-Dome in Yosemite, thousands of feet above the scarred rubble of mountain below: like the ends of the rail bridge after the great explosion in Chaplin's "The General" and the last splintered wood over the River Kwai, but teetering along the sheer grey granite.

2--As the tattered wood gets more and more normalized--like it is growing backwards through time--it becomes a huge and sturdy staircase made entirely out of railroad ties. And the railroad tie staircase leads down onto the Boardwalk at Ocean City, Maryland. My viewpoint has gone from the terror of hanging off the edge of the mountain to crushed in the throng on the boardwalk, and the tram is coming by--the false trams of boardwalks, with their rubber tires and fake trolley horns. The tram comes closer and closer like a python or a cow in a packed pen, and I am crushed up against a shop window, my pelvis shoved against the cinder block wall beneath the show window to the point of cracking, my stomach sucked in to try and be as small as I can.

3--As I turn and look in the shop window, thinking maybe I am about to be shoved through the plate glass, I am overcome with the image of the store in front of me. It is a shop that only sells second-hand items from my stepfather's home-town of Lawrence, Long Island. And everything is 37 cents. There is a lighthouse style light that sweeps across the huge window of the '37 cent emporium,' illuminating knick knacks in a blinding array every second, every two seconds.

3A--All the knick knacks turn into that very specific kind of white glass housewares, as often as not a lamp. The translucent milky white glass, often with with nibs all over it, that make the bulging bodies of lamps and oddly un-useful looking tea sets.

It doesn't seem scary now, typing it. But every second of it carried the weight of the inescapable. Every image was exactly as it had been the last time. I knew what was coming, I knew I could not get away.

Then I would open my eyes, and our room would be too big, and my heart would feel like a pill, far too small to be of any use.

When I had anxiety attacks as a child, they were most often accompanied by this sense of broken perception: my hand would seem huge and terribly far away at the ends of my arms, so that the children's aspirin my mother would put in my hand seemed so small, so distant, and it was just a symbol of how useless they were, how far gone I was.

I used to think that I was half-awake. That was the problem. I would cry to my mother that I wanted to wake up. I would tell her that I needed to just bury my face in my pillow and scream; maybe that would wake me up.

Then I would. Just smash my face into the pillow and scream. And I was young enough that it was that most awful of screams, the scream of a child. High, cracking, wavering, hopeless.

I look back at that; I see my mother sitting on the edge of my bed, hand on my back for comfort unless I yelled that it was too big, too heavy, like a rock, something in my broken perception. And I feel so bad that I made her endure the screaming as well. Brought it outside my crinkling mind, into the room.

I don't remember if it ever woke me up. If it ever worked.

And all that was back. All those senses of helplessness, or being trapped. I would open my eyes and the depth would be gone. I would open my eyes again into another layer of chattering, splintered sleep, and maybe the light through the windows would make me feel a bit better, a bit like maybe I was actually awake this time, or at least closer.

And then I would realize that I hadn't moved. That I was rock-still, straining every muscle to not strain a muscle, holding as still as a mushroom, because movement couldn't be good, couldn't help, could only make it worse, could plunge me back into the images or tear me up through the layers too fast, and leave me lost somewhere.

N would move, and that humanity--the normalness of an arm next to mine in the half light--would be some comfort. Would maybe allow me to move, stretch a hand off the bed, take a sip of water.

Because I am supposed to be drinking. There is a fat batch of bladder-bleed-inducing Cytoxan very fresh in my fluids, and the more I pee the better I am in terms of not risking shredding the lining of my system. I should be guzzling every time I am awake, peeing as many as five times in the night.

But Schwarzenegger, and the railroad ties, the tram, and the flashing lights on bulbous white glass, '37 cent emporium! 37 cent emporium! have kept me in bed, not asleep, not awake, not really anything.

When I do get up, very near full morning, and pee, it is a trickle the color of a split-lip boxer's drool.

So that is night one. Not so restful. Not the best way to leap off towards a week of recovery.

And it kind of goes like that all week. They think maybe I had a mild infection in my bowel so that I was making bent-double trips to the can about every hour and fifteen minutes. I was for some reason stubborn about taking Immodium, tending not to get to it until late in the day, so I stayed undernourished and dehydrated for most of the week. My own damn fault, but no less a setback.

N had a teaching trip to a Catholic University in Allentown, where she would read about her mom calling the Pope an asshole and how her parents told her to go read all the holy books and decide for herself--she ended up pledging allegiance to story, which trumps everything by including it all.

She was a little worried she'd get lynched, so we sent her on her way with a predominantly lunatic Iranian/Irish classmate of ours from Skidmore, who could always draw attention from the mob by yelling 'Allah Ou Akbar!' or offering to buy the women in exchange for three pounds of exquisite figs.

Her trip went very well, she was well received and the students--if confused as to how she spent her Sundays out from under the aegis of the Anointed One--were respectful, interested, and, as most youth can be if you let them, open.

That meant that Mom came up mid-week to babysit. We had as nice a time as a flat-out son and worried but capable mom can have, and in some unknowable way I feel like we, in the quiet, grew even a little closer, just suffering and watching and getting through. Never far apart, something about the quiet of the day and a half allowed for a tightening of an orbit. Maybe I just wanted it to be so because I still felt bad about making her hear me scream. But that's what parenting must be, isn't it: being willing to live a life where you will hear them scream, and, as she has done whenever asked, just try and make it better.

But the week was kind of a wash. Because of the bowel infection I wasn't gaining any strength or weight. Because of the high dose--40mgs a day for five days--of a new and even more potent steroid--dexamethesaone--I wasn't getting much from all I was eating except tickets to the can. Nothing got worse, but nothing got better. In sailing, it's called the doldrums--glassy water, flaccid sailcloth, vigor seeping into the sun-baked teak.

Thursday night I pulled it together to chair the New York membership meeting of AFTRA, and that 'performance' and the inevitably strong feelings one gets from interacting with the membership helped kind of pop me out of the worst of the flats. There are always a few utter crackpots who seem like maybe they only get out of the house to come to this meeting, and that's as much of the fun as anything. There is usually at least one confrontational event--often near the end when everyone is getting a little wall-eyed anyway. And then there are the moments that propel you to do more work for free, back-breaking slogs through the ins and outs of human and union politics, policy, the shifting sands of technology, the ever-vigilant employer groups who may love what you do and appreciate your input to their profit-margins, but who are still dyed in the wool to keep every cent and droplet of pride away from you and the plying of your craft unless forced to relinquish under duress. Who am I kidding: I love it and it is a blast. An exhausting, cyclical, nerve-tearing, human, blast.

And being 'on' to give my speech at the front and chair the meeting seemed to work. Guzzling Gatorade to fend off the recently discovered potassium shortage, and standing and sitting and standing and sitting between each report or award. I made it through fine. The highlight had to be when 'Maria' from Sesame Street shook my hand and told me I was doing a great job as president: she hasn't aged a day since I first heard her oddly deep tones and crisp Bronx accent teaching me how to say words and numbers as a mindless wad of skin and nerves on a shag carpet in front of a Trinitron in Baltimore in the early seventies.

I was amped when I got home from all of it, but when the crash came it came hard, and getting up early to hit the Drs again for the Friday bloodwork was tough. N and I got out about half an hour later than usual. The regular blood-yanker--getting good and pregnant now as one of the few markers of the great time that has passed since this all started--was out, so we had to shuttle back and forth from the chemo Barca-lounger to get blood drawn and then see the Drs. Things seemed to be slowly getting better, the bowel infection possibility was identified--my gut obligingly rumbling some high-decibel Bourbourigni as soon as the Drs got into the exam room--and the next week planned. Then it was back to the lounger for a bag of platelets, two bags of blood, a lovely final dash of Vincristine, the start of yet another mutli-day run of 40mgs of dex, and we were home by a comfortable 6pm.

So today was all down and easy. Got errands out of the way, ate and ate and ate, and have watched lots of TV: GlobeTrekker ate her way through Scandinavia, Formula One qualification for the 2nd to last race of the season in Brazil, some native loggers struggling to get 100,000 cords off some acreage in the cold north, and NASCAR Nationwide racing at Texas motor Speedway. Soon N will join me for BBC's updated Sherlock Holmes, starring the Office's Martin Freeman as Dr. Watson before he heads to New Zealand for two years to play Bilbo Baggins.

Tomorrow is the NY Marathon. I ran it in '07 and '08, and ran half to pace teammates last year. It will be hard this year. Missing Baltimore a few weeks ago hurt less because it was so far away. But I will be able to feel the thrum of the race most of the first half of the day. The news has covered all the support races, my email is alive with teammates planning where they will stand and support those from our group--a solid and talented crew--running this year.

But I am probably not up for the travel, the hassle, the breath of all those people: my white count yesterday was .7 so I am back on the antibiotics until further notice.

I am feeling better but feeling worse, if that makes sense. I have a busy week coming, which is good, and I think I will throw down another chemathalon Tuesday to get back up to treading water, in a way.

At the end of the week N goes to Louisville, where an hour ago Zenyatta didn't live up to her hype. I do not have that concern for N. She will teach there for ten days or so, and I will go to Baltimore to be watched over for the week. The increase in planning and activity should finish the job that feeling better today has done to drag me out of the dumps.

This coming Sunday I have the 5K to support Jim and try to eradicate Multiple Myeloma. I still want to run it, if slowly, from start to finish. We'll see. Realism is king, but goals are goals.

I feel like I am pissing and moaning, and so I will end with a sadness that should shut me the fuck up.

Shannon Tavarez, 11 years old, starred in the Lion King on Broadway. She'd wanted to be on stage as far back as she could remember, and she'd made it to one of the most successful shows on Broadway.

Then she got Leukemia. She needed marrow, and people of color are horribly under-represented in the marrow registries.

Shannon died Friday. Dead. Cancer.

Ad I'm watching NASCAR and thawing out chicken and rice. Explain to me what I have to complain about again? Who exactly the fuck do I think I am? Oh boo-hoo, I got the runs and need some stranger's red blood cells to get up the stairs without getting winded.

Really? Really!?

Deep breath in, look up and out at the world. Quit yer goddamn whining.

Shut up. Left foot. Right foot. Repeat.