On the Bubble

Friends: After posting my last (& only a just barely apologetically long and typo-riddled) update for your consumption earlier this month (9.10.04), I did, as promised, take off for a quick eight day, chemo-free get-a-way in lovely late summer/early fall Ontari-ari-ari-o. It was a wise choice.

Basically, I shed the cloak of my cluttered office set-up (along with the rarified, late summer, hurricane-enabled Northeastern humidity) & give Sheri a full seven days without my bad self constantly yabbering around her, letting her chill out and actually get to use the remote all night, and providing me a week retreat to do some good work and perhaps see a few friends.

And so I hopped in a little USAir puddle jumper on Saturday afternoon, picked up my rental car just in time to do the quick 40 minute drive for an exhausted evening catching up with my folks and watching the Canadian National Team squeak out a World Cup semi-final victory over the Czech’s (this is hockey, friends). And then, after attempting to get eight hours sleep, I went out for a few odds and ends with my dad on Sunday morning.

(“What?!?” you ask, “no church for the Reverend and his good lady wife?” I’m afraid it’s true. I am a bad example to all. First Sheri’s vegetarianism goes by the wayside, now my parents’ lifelong habit of Sunday School and morning worship is broken. Sigh.) Around noon I waved them a fond fair well as they left to visit the North Country, and then began to make their place into a comfortable work space for my idiosyncratic work habits--eventually buying a lamp for their slighly dark family room).

Later that afternoon, my good friend Bob Holmes arrived and off we went to Toronto (passing our boy Mike Weir as he coughed up the Canadian Open--hack, sputter, choke--on our way to what has become an annual trek to the Toronto International Film Festival and a night of two world premiere Gala's at Roy Thompson Hall--Kinsey and Ray!. (I’ll put a posting up about both of these films on my site in the next few days.)

But the week away was not about films. I was away to make some healthy space (emotionally, spiritually and physically) to do some good work on a project I’ve been wrestling with for too many months, as well as do a bit of other writing (for me) and do some work for World Vision Canada. I wanted, after this week away, to more or less in good conscience hand it back to the “powers that be” who commissioned it, then proceed with my life--such as it is--no longer burdened by it.

And so on Monday morning I began working on that project and kept coming across the notion of/spiritual gifting of discernment. Discernment is, as typically understood, a grace, a means by which we discover and learn, with the guidance and direction of the Spirit, to make the tough calls in our life. Sometimes--but only rarely--these choices, these gift of discernment kind of quandaries are between good and bad.

But in most cases, however, the really tough choices in life call for a special kind of clarity and wisdom that will enable us to see and choose not between good and evil, or good guys and bad guys (or, sorry Mr. President, even evil doers) but between two or three or more good ideas or people opportunities.

In my consulting work, that usually means helping ministries look at the world around them and decide what good they will not do. The opportunities to do good around us are nearly infinite, but our resources are not. We do-gooders have decidedly finite bank accounts.

And so most non-profit ministries, programs, businesses, churches and even politicians must choose what one or two things they will do excellently, rather than choosing to do a mediocre job on five or six things.

(Sadly, in some actual cases, I have worked with ministries that actually believed that "every" open door they encountered must have therefore "been" opened by God. Sigh. Unfortunately, those who believe such nonsense are usually the guys--and, yes, they usually are guys--who set policy but don't implement it, and so their poor staffs are stuck trying to play catch up, and they can't complain or confront because they've already been told that it's God's will....)

Given that this was the focus of my writing that morning, and that I was running a slight fever, I looked at my schedule and concluded that it was insane to believe even for a moment that I might be able keep my 7:30 am to 5 or 6 pm writing schedule and still get to the lovely Roy Thompson Hall for the Film Festival "world premiere gala’s" that I had tickets for, or even make it to some area establishments to meet some old friends for the first time in ages. Coming to this conclusion, I sucked it up, called upon my better angels and for one of the few times in my life let responsibility trump socializing and cleared my little Sony Clie’s schedule (with my nephew CJ, just graduated from Film school and recently married to the still luminescent Alison, being the one exception, as he had to come over and pick up the extra tickets to the fest) and gave myself 4 & ½ days of (relatively) uninterrupted work.

And I did just that. I got a fair amount of verbiage out of my system (tho’ this project has seen more sentences endlessly re-written than contained in the entirety of any given Russian novel) and by weeks end, when I drove up to lovely Mississauga, ON and the HQ of World Vision Canada for a meeting I felt like I’d done a good thing.

Of course, the afternoon after those meetings I drove to London, ON and, after stopping to see my remarkably saucy and kind Aunt Phyllis Ozard (the delightful wife of my dad’s late brother) at her new extended care facility, I drove over to the three-story Victorian that my very good friend Mark MacLeod purchased a few years back, and that he has now, with his partner Bill, turned into a place that is about as close to perfect as you might imagine. (Indeed, it really is among my favorite homes in all the world, and I’ve already pledged that in that hypothetical future where I sell my memoir about beating this stupid disease Sheri and I will pop over to Ontario with check in hand and just tell Mark to name the price and send he and Bill off to get that country home they’ve wanted … well, it’s a good fantasy.)

Anyway, that night instead of gathering at the little English establishment called Chaucers, we had sent out an email inviting all sorts of folk to come over to Mark and Bill’s and have a bit of a party. It was a great night, and humbling, too, as about 50 or so of my friends from every aspect of my Canadian life—from two or three who I’ve known literally my entire life to folks I worked with 15 years ago at Metropolitan United and who went to Peru with us in 1990—all converged.

It was amazing, friends, and just the bolstering I needed to ride home on as Sheri and I prepared for my Monday (a week ago today) appointment with Dr. Luger.

As we told you in the last update, we thoroughly expected that Dr. Luger would arrange for a new session on a new drug--probably a low-to-middling chemo that would slow me down a bit for a week or two a month, and maybe make us resurrect the old green Rubbermaid © puke bucket--and then in three months or so proceed with a second Stem Cell Transplant (using the same cells we harvested in ’01.

What the doctor actually told us, however, was staggering and utterly unexpected.

Remember all that “buying time” stuff she said about trying other treatments--just getting my counts to stabilize and maybe even come down until I was ready for a either a “mini” bone marrow transplant or the afore mentioned Stem Cell Transplant?

Well, she’s not willing to buy anymore time.

Here’s what’s up.

1. Dr. Luger doesn’t believe that my system can take any more “experiments” with various chemotherapies, and thinks that they--the experiments--would damage some of my internal organs (like my heart, lungs, liver, etc.)

2. She believes that my counts are currently hovering around levels so high that if they don’t come down soon I will almost certainly see damage to my kidneys.

3. Because even at their most successful it takes about three months for a Bone Marrow Transplant to be effective (remember all that stuff about "Graft-Host" disease, when the new bone marrow spends 90 days or so looking around and trying to decide if it likes the window treatments or the open concept kitchen, and if it doesn't it just kills you?). Well, because of that it makes no sense to even look at a mini-BMT right now, since I need to see my counts go down now.

4. But, given the urgency to get the counts down, she feels like she has only one chose--to immediately begin to plan for another Stem Cell Transplant.

And short of any other good opportunities, that’s what we’re doing. No chemo to pave the way, no special drug cocktails to make me more “receptive,” nothing. Now. Quick. Just “four to six weeks” to wait, and then—boom!—we’ll do it.

Whatever happened to buying a girl a dinner?

Here’s the plan.
On October 30 or 31 I’ll be admitted to HUP (the Hospital at the University of Pennsylvania--where I had my first transplant in October 2001), and sometime during that the first day I’ll get a middling dosage of some high-grade Melphalon (a fairly toxic bit of chemo--which I remember quite vividly).

The following three days, November 1-3, I’ll get to do something I didn’t have to/get to do in 2001 (nor at anytime, actually, since then): instead of heading just around the corner to the new WXPN Performance Hall to see Bruce Cockburn play live, I’ll get to leave my lovely room at HUP twice a day those first three days in the hospital in order to receive what they call TBI--total body irradiation.

And yes, it’s exactly what it sounds like: big old blasts of Chernobyl-esque radiation covering the entirety of all of me, its intentional imprecision designed to knock the life out of as much of my bone marrow and blood as possible without killing me. (In this case, the radiation serves as a substitute for those few months of chemo that they would normally do on a "first timer.")

I’m told it’s a real highlight.

(In a relatively pathetic attempt to make lemonade from these lemons, I’ve conjured an entire alternative reality/world where this radiation is what gives James Bond his ongoing--how would we say it?--appeal.

Mojo.

Remember that scene in the first of the Bond franchise, Dr. No, where Bond and Honey Rider are captured by Dr. No’s henchman and decontaminated in some kind of weird, conveyor belt shower with frosted glass positioned to just barely conceal Honey Rider and Bond, James Bond's carefully guarded national security secrets? Well, I’ve decided that that’s what the TBI will be like.

Delusional? Most certainly.
But it’s my story and I’m stickin’ with it.

After those three days of radiation the doctors and I will then do exactly what we did three years ago in 2001: more Malphalan, followed by another transplant using the stem cells that they harvested in 2001. (If you look on the left-hand side of the page on my site, you'll see "Cancer Journals, Selected Entries." Follow that link and then scroll down the list of various until you'll find a full description of my first Stem Cell Transplant in 2001.)

Now, at this point in a regular, old fashioned Stem Cell Transplant, the docs would send me home. Sure, I'd be loaded up with pain killers and antibiotics to spare, but I'd be home--with Sheri and friends and family all baby sitting me, waiting and watching (even "tarrying") for me to get infections and then eventually become sick enough that they'd have to take me back to the hospital for readmission.

(In 2001, for example I was home an entire week before they took me back into the Hospital for 11 days--most of which I don’t remember, despite the fact that I was cogent and busy while throwing up. And pushing the morphine button on a regular basis.)

This time, however, because the radiation will have already weakened me substantially, they’re not releasing me. Instead, I’ll be in the hospital for at least three weeks—hopefully in one of their good “transplant” rooms with TVs and VCRs, (I’ll have my laptop with its DVD player anyway)—where I will relive that John Travolta TV movie from the 70s called “The Boy in the Plastic Bubble.”

The theory of the Stem Cell Transplant (and our hope) is that this transplant will knock the counts way down again, and either allow me to get on with something like normalcy for a while, or, prepare the way for a mini-BMT, which will allow me to get on with something like normalcy for a longer while.

But either way, it’s pretty much all we’ve got--short, of course, of some kind of miracle herb, or miraculous mexican coffee enema or, in all seriousness, the prayers of the saints.

Seriously, I’ll gladly take Teresa of Avilla’s Son of Man glowing spear, Kathryn Kuhlman’s slightly creepy I… believe in miracles as she waves her chiffon gowns and turns her “I” into something multi-syllabic, or, even the slightly too infatuated with spectacle small time preacher who is as honest and sincere as the day is long in the way he makes saying/shouting/singing the name Jesus into a three syllable word.

Or I'll take you.

Yep. You heard me. I'll take you and your prayers, In all your glorious misery, foolishness, faithlessness, fear and self-doubt. I'll take your prayers for comfort, for wisdom, discernment, gratitude, and mostly, I'll take your prayers for healing.

In fact, they're all I really want from you. I want you--this immense, rag-tag gaggle of contradictions that gets these letters--to kneel before our creator (and I know how some of you have a hard time even believing) and ask God to make me better.

When I was in Canada two weeks ago, my friend Bob and I stayed up far too late after the movies we saw, talking about "that thing" that is at the core of what we believe.

Both Bob and I have struggled with our faith--not in the sense that we’ve struggled to believe, per se, but in that we’ve struggled with what we believe, and probably more importantly, we've struggled with what of what we believe is worth holding onto, and what isn’t. What things are truely iconic and draw us near, and what is a distraction from "that thing"?

It’s a conversation we’ve been having non-stop for 20 years now, and while some days I feel even further from a resolution than I did that first night as room mates playing chess together and watching those new-fangled rock videos, if nothing else I’ve learned that God can take the tearing down and building up, that He doesn't mind us wrestling with the peripheral in order to find something of the center. If the last three years have taught us anything, it's that that core at the center of what I believe can survive my questions and doubts and anger and frustration just fine.

Here’s the point. Some days I hate--really, I hate--all the crap that goes on in the name of Jesus. I hate old Moody science films or a $25M gory Gibson epic, paid choirs singing "spirituals" like they're meant to be sung by white people who EE-NUN-SEE-ATE or incomprehensible alterna-worship music. I hate greeting cards and gospel tracts, devotionals that are resolute only in their conviction that good things will happen to you because you are good, books bought to be displayed not read, Precious Moments, whatever. It’s all crap. Dung. Shite, fit only for the 5th level of hell or wherever Dante demands. And some days this stuff can leave me nearly spiritually paralyzed.

And that's not good.

However offensive, however stupid, however far from anything like the Jesus of Scripture some of this stuff might seem, I know that that Jesus--the one who offers us "that thing"--so easily transcends all that clutter and finds his way to the core at the center of the core at the center of the core, if only we're desperate enough.

I'm sure he hates most of the clutter too, but unlike me he doesn’t hold a grudge against the stupid “faith claim it” woman who harassed us in church and tried to get me to say “in Jesus’ name I am cancer-free.”

He doesn’t remember even the worst offenses of Robert Bateman or the guy who draws BC or even those old Archie comics.

And even Jack Trick can’t make Jesus stay pissed at what they do to and in his name.

As terrible as they all are at being anything like a faithful representation of a "true" follower of Jesus, Jesus still loves them tenderly, and invited their prayers.

And me too.

Surrounded by all this clutter of my own ego, my own self-reliance, my penchant for living and wriitng parenthetically and my own "look at me I have wisdom drawn from Cancer" narcissism, up to my neck in my own self-absorbed (call it what it is) sin...

He still loves me, and loves it when I pray.

And because of that I have no problem in asking any and all of you to pray. Or asking any or all of anyone you know to do it too. Just do it.

Whether you’re a liberal or fundy, moderate or intemperate. Pray.

A tongue-talker or hash-smoker or both, I don’t care. Pray.

A smells and bells high Church Catholic or church with carpet, soft-rock bland band with power point hymnody or a fat-fingered woman chording out “there is power in the blood” in an old-fashioned clapboard chapel? Whatever. Pray with me.

An elegant, middle-aged, “I don’t need to be ‘practicing’ because I’m already good at it” Lesbian minister or a fire-brand, polyester-wearing, fat-tie-twisting, “God hates queers” Louisiana Preacher or a perfectly tailored, hipper-than-me (sigh), smarter than a whip, the Matrix isn't a metaphor for much but Lost in Translation is kinda Youth Minister? Seriously, shut up, all of you. Just please, pray.

A Christian, Jew, Muslim, Black Muslim, atheist, agnostic?

An adolescent? An octogenarian? Midway through a midlife crisis? Midway through your third husband with a midlife crisis?

All of you: Pray, pray, pray, pray, pray, pray, pray, pray, pray, pray.

Why?

Because I’m desperate enough to believe that God doesn’t have a litmus test for calling out to him.

You don’t need one speck of theological training.

You don’t even know how to read.

Or see for that matter.

You just need to know enough that when we’re out of options, a desperate, passionate “Help!” is the closest thing to perfect prayer, and God doesn’t want or need even one syllable more. (And he sure as Hell doesn't need a pole to rally around.)

And so, please, I’m confident that he’ll listen to you when you pray for us (and especially for those around the world who so much more desperately need His nearness than I ever will).

So please, please do.

We need you.

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