Buying Time (get to the crappy point, already)

OK gang, let's just do this simply. Three weeks ago all my June tests (both sets) came back and the news wasn't so good. (See previous post.) Two weeks ago tomorrow (7/16--the day before my wife's birthday and the day our "weekend o' parties" began), I met with Joanne Hinkle, who had been monitoring my Revlimid drug trial), Dr. Selina Luger (the doc who supervised my stem cell transplant in '01 and who was supervising me on this trial) and Tammy Ball, Dr. Luger's physician's assistant and all-round amazing go-to resource, and a kind of calming, leavening agent to Selina's more direct (but still quite kind) bedside manner.

Here's the deal, plain and simple: They feel I've exhausted most of the treatment options and protocols available to me, and want to proceed with a bone marrow transplant. The problem with a BMT, of course, is that with Myeloma patients, the mortality rate for the procedure alone is near 50%, and so there's another kind of BMT that's been developed called a "mini-BMT" or Mini-Allogenic BMTs, in which a few steps on either side of the actual transplant are left out or modified, which reduces the mortality rate to around 10%. However, it also increases the possibility (and the endurance of that potential) for Graft v Host disease out to about two years. Yippie.

So, we peppered them with all sorts of questions about other protocols and studies and did they take me off Thalidomide too soon last summer and what about the possible correlation between the rise in my counts and the lowering of the Decadron dosage and can't we just find another study or give me lots and lots of anything other than a expletive deleted BMT, mini maxi or midi?

Here's the kicker, the punch in the mouth, kick in the groin, trip on the crack in the sidewalk, booger on your first date, slap in the face, no creamy nougat center in your Three Mouseketeers bar:

We can do a few more of these things, but it's all just buying time.

Shit.

No, really, that's the word. That and a string of the most fowl and frustrated bits of questioning, angry and just plain old frightened combinations of offensive ranting imagined.

I don't care if the FCC or John Ashcroft or the credentials committee back at the PAOC are listening. I walked around the Colenutt's and the Oates' farms enough when I was a kid to know that when you walk behind a three thousand pound bull steer and step in what's he's left behind, it's not poo, it's not crap, it's not dung or feces and certainly not doo doo or "droppings" and in no way is it bovine giftings or even cattle grass or Elisha brand cooking fuel. And when every time you look over at your wife during her birthday party and you think to yourself will I know her when she's 36? you're not thinking darn, drat, dang or damn, shucks, shoot, stink, frick or frack, flippin' or freakin' or friggin.' It's not rats, nuts, golly, gee, gee-willikers, Jumpin' Jehosophat, cheese-its & crackers, Lordamighty, anything the Beav' might say about Eddie Haskell or anything that Eddie Haskell might have said about the Beav or his possibly closeted big brother.

I'm sorry, but when the doctor says the words just buying time against whatever context, it's a big ol' piece of shit that comes to mind, and nothing else.

(I can see my poor mom's face right now, all furrowed at me, and so very, very disappointed. "O, Dwight, do you realy need to use that kind of language?"

Uh huh. Yep. Right then, in that moment in the back of my brain, yes, when I was driving home and scared out of my mind, yes, during the concert that night and dinner and billiards the next day and at least once a day since then, too. Yes, Yes, and Yes, again.)

(Oh, and whenever I hear the tortured explanations from the Whitehouse Press Secretary justifying how making negotiating cheaper drug prices illegal is good public policy--then too as well.)

And so, we listened, carefully and diligently, to Dr. Luger explain the procedure, some of the process and especially the parts about wanting to do it--the BMT--sooner rather than later.

I'd gone into this meeting with shoulders square, absolutely positive I would hold my ground and tell her no BMTs were in my future--there had to be a better way. But by 10 minutes into the conversation, dammit, I wasn't saying no, I was saying stuff like "OK, what about--insert alternate protocol/therapy/drug here--? Can't we do this before the BMT? I rolled out the litany, every thing short of coffee enema's and rolling around, covered in prayer cloths from ancient shrines to mystic saints and dung from holy cows on Katherine Kuhlman's grave, and promised a few more.

And Selina agreed--yes, we can try a few things to buy you some time.

That phrase again.

Sh.... No. Once was enough.

And so, we listened and did a bit of bargaining, and all the time I'm getting madder and madder, because you what? You know what's most criminal about all of this "buying time" crap and "we have to do this soon" stuff?

I feel good.

No, that's not true. In relative terms, I feel great.
Fan-frickin'-tastic.

How is there any justice in that?

(Like this was ever, ever about justice.)

And so I find myself saying over and over again to myself that "I can't be that sick. I just can't do a BMT right now. I've got too many other things to do. Weddings and birthdays and anniversaries.

At this point even I'm laughing at me, half expecting with all this bargaining going on for Dr. Kubler-Ross to walk in the room.

"Now, young man, which step is this? Are you still angry? In denial? Bargaining is it? Ahhhh. I see...."

And so it was settled, I'd meet on the following Monday with Dr. Hoessly (the "other" oncologist) and we'd look at some other treatment options, ideas, protocols. And then sometime, much much later than right now, but certainly much sooner than we want it, we'll do that BMT.

Shit. (Sorry. Last time.)

And so we left, I drove Sheri to work, and then I went back to the apartment and did a bit of work, but mostly just sat and wondered and dreamed and yearned and prayed and hoped and prayed and cursed and worked and called a friend and left messages an then wrote a bit and eventually got back in the car and headed back to the city where we went on with our plans for the weekend o' birthday parties, starting with an after-work stop at a favorite center-city establishment of the Irish variety with about 8 of Sheri's colleagues from work (I remember colleagues....), and then down the two blocks to the waterfront for a night of taut, smart pop music (Fountains of Wayne) at the annual WXPN Singer-Songwriter weekend at Penn's Landing with one special colleague and friend who just recently went through a successful year treating non-Hodgkins lymphoma.

The next day, we continued our celebrations, first with Sheri's brother Jeff and his wife Sandy, eating lunch and loitering in my favorite part of Old City Philly. I love it down there amidst the cobblestone history and Betsy Ross' little flag factory and George Washington's slave home, ("land of the free," tee hee), and of course two of my favorite commercial, consumer delights: a great used CD store (old T-Bone Burnett imports and one of my last Bruce Cockburn LP to CD replacements) and (almost nearly as good as DiBruno's, the sublime cheese shop in South Philly where just walking in the door and taking a deep breath is close to climactic), a huge wholesale restaurant supply store the where I can wander aimlessly for hours, dreaming about my imaginary fancy kitchen with all the professional bits and pieces and odds and ends, from squeeze bottles for the emulsions I just made and plates to squeeze them onto to the Salamander to finish off a grilled whole Snapper or the gourmet steak and crab meat nachos or a six burner industrial grade gas range or a built-in deep fryer. (Insert Homer Simpson noises here.)

(Dwight, Dwight! Wake up, Dwight!)

Later, when we were done loitering--well, the rest of the four were done loitering--we met up with about 18 friends at Cuba Libre, a favorite Cuban restaurant (who woulda guessed it with a name like that?), and we together offered loud and lovely toasts to my bride, wife, lover and caregiver, followed by a few hours at a great pool hall around the corner. It was a grand and great night.

Part of the goodness of the evening was the collective gift from many of Sheri's friends that I encouraged, a bit of coin put away to send her for some spa treatments. Ah, I wondered, but where ought she be spa'd? There are some fine spas around where we live--a couple in walking distance--but it didn't seem quite, I dunno, enough, you know?

Wanting to do a bit better than "around the corner" and emboldened by all this "just buying time" crap I called a friend in New York with contacts in the hotel industry (I met him back in the Habitat days when we worked together to get the massive traveling publishing empire for whom he works to publish something about Habitat, and in the process he and I became good friends. He was just one of those people you might only see every three or four years but for some reason there's always a connection, a pure, unphased moment of recognition that says we will be friends for ever, whatever the moment. Plus, he always knows the best places to eat breakfast and take a leak or be seen having lunch in NYC. I won't embarrass him more, but I love the guy....).

Anyway, I called my friend and despite all my better judgments asked a favor. Was it possible, in any way at all, that he might have a line on a cool cheap boutique hotel with some discounts to make it cheaper, so I could take Sheri somewhere to use her spa stuff in style? A kind note, an idea, and then a day later, this: voila two free nights at le Parker Meridien in mid-town, facing the park.

Holy sh.... (Oops. Sorry. I said I wouldn't do that anymore. I'll stop. Honest. $0.25 in the swear jar each time. Promise.)

"I love New York" isn't just a bumper sticker.

It's a tenet of some kind of faith, or better yet, it's something like a geographic & cultural grown up man-crush.

It's also the one place in this world that helps me know understand Lot's wife, with all that destruction and explosions and wrath andcan't you even find one just man? stuff.... Only in New York could you possibly understand the impulse to look back. I don't think, honestly, it was because everything about what was back there was bad. It wasn't. It was great. It's just that that greatness had been reduced to the service of the most base and selfish and inhospitable of acts (it's all explained in Ezekiel 16--and it's not what you think!)

I love New York City, I did from the the first time I emerged from the bowels of Penn Station and looked out and up and around and behind and realized that I was actually standing directly in front of Madison Square Garden, the mythic temple of childhood hockey wars, Ali and Frazier, rock and roll movies and political conventions.

I have this amazingly vivid memory of the day that my father took sick in February of 1970. We were in Toronto at the time, and my sister had walked downstairs on a Sunday morning and found my dad slumped over his Bible on the kitchen table, his face the color of rancid butter. She yelled for my mom, and I just followed and then there was a flurry of activity and (this is NOT the vivid part) either a friend or an ambulance and this vague notion that something was very, very wrong and then, (here it gets vivid) someone took us to their house. Two things stood out that day to my eight year old self. First, they had colored TV. (You have to understand--my dad bought his first color television when he was in his 50s!) Second, they let me watch a hockey game on Sunday afternoon, and that game, that day, was a Ranger game.

That's all. New York is mythic, from the Garden at the bottom of "mid-town" and up a few blocks and a bit east, and way up... The Empire State Building and the Chysler Building and Rockefella Center and Times Square. That love even survived the first time I ever stepped into Central Park and watched two pin-striped "Master of the Universe" types buying crack from a pusher who was clearly not a "Master of the Universe." Ah but you can live with a few things if you've got The Mesa Grill and the Carnegie Deli and Les Halles (X2--once off Wall Street and one waaay downtown around the corner from the old Twin Towers) and Mario Batali's Esca and Babbo and dozens of other great restaurants just on the upper west side on 8th Ave alone.

And Sheri loves the place even more than I do.

We leave tomorrow (Friday) at noon, and expect to spend some serious time loitering in the greatest city in the world.

And oh yeah. My friend, God bless 'im, he called yesterday and told me he'd called another friend and arranged a "comp'd" spa treatment at the Four Seasons Hotel.

The Four Seasons!

And then, late on Sunday afternoon, we'll return to the real world, or at least our real world, and Sheri will go back to work and I'll turn off the phone and try and write without distraction, except of course that we're looking hard to see if we can find a new place to live. Yep, we're thinking of leaving the safety of the 'burbs and taking an apartment in the city--our Philadelphia--where we'll be closer to the hospitals where I'll eventually submit and have my BMT, moving largely so that Sheri won't have an hour-plus commute late at night while visiting me during my month or more of glassed-in, John-Travolta-movie-of-the-week-boy-in-the-bubble isolation, and moving, too, because we've wanted to do it for a long, long time. (Remember what I said about DiBruno's?)

Our Philly.... The city where, this next Wednesday, I'm starting a new protocol, a drug called Doxil that has, since my diagnosis, become a kind of standard initial Myeloma treatment, in a lot of cases replacing the pre-stem cell transplant 96 hour VAD cocktail (Vincristine, Arethromicin, Decadron) with a cocktail called "DVD" (Doxil, Vincristine, Decadron). It's replaced VAD in a lot of cases because it doesn't demand hospitalization, and it doesn't have nearly as many side effects.

There will be side effects, like super sensitive skin, but no hair loss, no puking, no IV drips. Please remember us and pray.

Funny, 25 years ago this Wednesday on a hot afternoon in Essex, ON I was a groomsman in my Sister's wedding, all dressed up in our very, very 1979 tan and brown tuxedos, a 17 year-old, sitting next to my sister's college friend, flirting, laughing, thinking about my life, all that was to come, who I might marry, what I would do when I was reallly old and like, 40 or something.

Little did I know that on this "silver anniversary" it would be like this.

And you know, yeah, it sucks. Yeah, I want to cuss and scream and weep and wail and rend my clothes and wave my fist in the air and curse at the sky and wonder where is God now that my blood is all wrong?

And yet, despite it all, if that same college friend of Susan's was to sit next to me and ask, I'd tell her two things I know are true in the midst of all the doubt and fear and crude, endless scatology from my potty mouth. I'd tell her my wife was worth waiting 16 years for, and that I still believe God has his hand on me.

And so for now, here in the suburbs of Philly on a hot July night, with C-Span on the TV around the corner playing the convention speeches over and over again and Bruce Springsteen is singing "no retreat baby no surrender" I'm feeling good, trying to clear my mind and desk and phone of distractions and do good work for World Vision and my ghoulishly patient publishers, God bless 'em, and anxiously waiting for tomorrow to come so that I can close this thing and get to the best part: chauferring Sheri to Gotham for a few hours of indulgence.

This weekend, for me the voiceless will wait. Instead, I'm focusing my energies, prayers and (as Chef might say) "good lovin'" on the long-suffering and too oft under-appreciated Sheri Blick Ozard.

And that, my friends, is time worth every penny, no matter how much it costs to buy it.

E-mail Dwight | Back to Cancer Journal Index Page