27. I'm Not Ready

Friends, Family: I’ve been meaning to write to you for a month now, trying to give you an overview of what’s been going on with us since you last heard from us at the end of July.

This has been harder task than normal of late, in part because I’ve been a bit of a moving target, and that target has been one that seems to bleed bad news of late--or at least news of the oddly ambivalent kind. And while most of the time I don’t look gimpy, the truth is that 100mg of straight morphine two times a day can fool nearly anyone--everyone, that is, but the well-trained doctor who can lift his nose and sniff out a wounded social activist/writer/margin-dweller from at least 200 paces.

Alack alas, such is my life these days--or rather, such is our life. (It’s ironic don'tcha think that the woman the boys at my bachelor party called “the old ball ‘n chain” is the one now carrying me... or at least dragging me around?

(OK, enough with oddly drug-induced free-association chatter for a while....)

Where to start since our last real note to you all?

As you know from my late-July update, after nine months participating in a drug study for a new drug called Revlimid, and seeing my UPEP protein counts plummet from 20-something last October to a new record low 0.16 in April, I was removed from the study in early July after my UPEP counts increased two months in a row.

This was disappointing, (obviously) but more painful still was the fact that the increases weren't done. We were certain that June’s three-point-something count would be the end of this reversal, which was probably why, in early August, I didn't send out a real "Update" to tell everyone my counts were up again. Instead, I sent that slightly less than optimistic tirade to only my "extended family" & "inner-circle" lists. (BTW, that "inner-circle" update is online--it's the update before this one.)

Despite this, and all my other denials, my counts didn't turn around. No witches with ruby slippers, no sweaty evangelists, no slightly manic, stinking from not seeing enough daylight cancer researchers appeared, then, or now.

As you might gather, we've been a bit out-of-our-mind since Dr. Luger gave us that just buying time stuff, even when our counts were only three-point-whatever. For what it's worth, however, she did suceed in ramping up the urgency of our situation--just in case the whole "this is an incurable disease" stuff and the whole "if we don't stop the increases in your counts we can't guarantee that your kidneys won't fail" didn't do it--when she said it to us again, only this time against the backdrop of our late July/early August results, telling us that our UPEP Protein counts were around 11-something.

And, no, in case you were interested, telling us about possible therapies like a Bone Marrow Transplant wasn't reassuring in the least--even when she eased the blow by telling us that those old fashioned BMTs, with their nasty 50% mortality rates, had been replaced for Myeloma patients with a new "mini-Bone Marrow Transplant" that kill only one in four who tried it.

Woo hoo!

One in four?!?!?

Sorry. Put me in the not reassured in the slightest column. Call me a traditionalist, an old fogey, a curmudgeon, whatever, but if I'm going to contract a fatal disease, I want the dignity of dying from it, not the procedure you say will fix it.... How do you say it? Ah yes, I remember:

Ppplllllfffffttttttt.

Still, what choice do we have, really? If that's the deal, if our doctors need to "buy time," so be it. We'll pull on our black knit caps and steal it.

And so we returned from our trip to New York, squared our shoulders against the universe and began to do what anyone who watches as much TV as we do does: we started superficially, and decided that at the very least we would try to not let the inside of my body tell the outside how to feel.

Screw the counts, known and yet to be known, we'll set out to enjoy every moment--beit our weekend o' weddings in Ontario in mid-August, a night out to see some live music, a rainy weekend afternoon at the movies or a few friends over for Sunday Brunch.

No one we didn't know would have to know I was sick unless there was a reason. Myeloma would be our little secret.

And so I re-read what Jesus said about fasting and "anointing your head with oil" in order to never make a scene, and then took a lot of of “breakthrough” medication (maybe a bit of Heavy Duty Extra Power Tylenol with Codeine and Caffeine) on our way out and maybe a sleeping pill or two the night before, then I put on my funky new shirt and trendy new jeans (had I mentioned that whole losing 15 pounds in 10 days thing?) and go out looking my best, hugging the friends I don’t see nearly enough anyway like I might never see them again, and breathing in deep all best stuff around because, stuff is, after all, really, really good.

Because, remember, I didn't say so, God did.

Or, maybe I'm not that brave, because exactly one a week after three days of nearly non-stop loitering in Gotham with essentially no pain or stress, my body makes it clear that it's going to be making some changes around here, and even tho' I woke up a really, honestly, it's-not-that-bad, I-only-hurt-once-in-a-while, I-actually-feel-mostly-normal, I-will-take-that-speaking-job-in-November kinda guy I went to bed being a crap-I-can-feel-this-thing-rearranging-my-bodily-resources-and-energy, dammit, I-really-do-have-cancer kinda guy.

Truly, it's the weirdest thing. Basically that Sunday afternoon was my bone marrow called a staff meeting to tell all organs, limbs, muscle groups and nervous system--pretty much everything but the Super-Ego and the Id--that it had decided to rearrange its priorities and concentrate all its resources on fighting the traitors within. Oh, and my Id will temporarily be on "work to rule" until sometime in September.

In response, I lose a couple of more pounds over the next ten days, and start feeling like I need to lie down for a few hours, just because across the street to the grocers and back and it hurts a tad more and I'm just plain weary.

So, a couple days later I drop a fax to my Dr. Hoessly's office and suggest to him we increase my Morphine dose, and when I see him the next day to get the new 'script (that's what we "professional" patients call a prescription) he sits down with me and agrees that it's a good idea. "Good call," he says.

(Great, like you enjoy being a step ahead of a guy with six years of post-doc fellowships in oncology.)

Have I mentioned how much I hate this thing?

And so we suck it up and grit your teeth and do your damnedest to make our way to the next weekend where we're committed to be in Ontario so we can celebrate two very important weddings, followed by a family celebration of my sister Sue and her husband Jim’s 25th anniversary (they being home in Canada for their youngest son CJ’s nuptials).

Then we spend a bit of time online, trying to arrange a trip to the Myeloma Institute for Research and Therapy in Little Rock, the “Mecca” for all things Myeloma, even as I spend a day under "house arrest" filling your elegantly titled "24 hour specimen" bucket so we can find our how effective my first month on Doxil has been, certain that it will show signs of arresting the growth of the disease, thus giving us time to carefully examine alternative therapies, second opinions and otherwise avoid, at all costs, that stupid one-in-four nonsense.

Except of course for one thing.

Eventually, after weddings and meetings and concerts and phone calls and Procrit and 24 hours worth of pee we get the results back, and they're not what we wanted--not even close.

And so, here's how it goes.

On Wednesday (9/1), I make my way to lovely Paoli, PA into Dr. Hoessly's office, greeted as always by his incessantly charming and miraculously upbeat staff as I weigh myself (over the past 3&1/2 years I've been there so many times that I no longer wait to be asked to do all the basic 'just in the door' stuff you do for every visit), note to the registrar that I'm down another couple pounds, give them a bag of magazines (we give Dr. H all my old "Wine Spectator's") and then eventually make my way back to sit down on the green leather recliners in the "chemo room," where Betty Ann, all smiles and joviality, "accesses" and flushes with Saline my "medi-port" just below my right collar bone for my monthly Aredia infusion--a bone building therapy that I’ve been getting since April, 2001--and, hopefully, in about 90 minutes, round two of Doxil.

That's when Dr. Hoessly walks into the room, sits down next to me grimly, and proceeds to tell me that my late August 24-hour urine collection are back and that there will be no Doxil since my latest UPEP counts have him (and Dr. Luger too, whom he had called just now with the counts), in apoplectic fits.

"What are they?" I ask.

A long pause, and then he pointed at the number on the first page on my charts.

27.

Well, to be honest and accurate, they were 27.79--the highest measured counts we’ve had since we started measuring the week I was diagnosed in April 2001, when I weighed in for this fight at 36-point-something

27.

This hurts.

A body blow in Ali-Frazier III.

Remember that long paragraph about the “right words” in my last update. Go back, read it, and then throw it away.

All the fearful, angst-driven, existentially-tortured profanity in the world can’t get at what I felt everytime I said or thought or saw those numbers.

Even St. Paul’s glorious helplessness in the 8th chapter of his letter to the Romans couldn't help. His promise, long before or way after anything resembling "glossalalia", sandwiched between his assurance of “no condemnation to them who are in Christ Jesus” that begins the chapter and the fear-mocking, devil-beating “nothing can separate us from the love of God” stuff that ends it--even there, in Paul's exquisite, lyrical promise that GOD himself gives voice and meaning to the entire vocabulary of our inarticulate mutterings, sobs, croaks and moans--that He himself resides in those “groanings too deep for words”.... Even that was not enough to give voice, comfort, or even just release to the fear, anger, and absolute terror those numbers found in me.

twenty-freakin'-seven-point-seven-nine.

About a year ago when my counts unexpectedly and substantially increased after just a few months on the new Myeloma “wonder drug” Velcade, for the first time in 2 & ½ years of fighting this disease, I felt a sense of “injustice” that I was sick. For about a week, I languished off and on in momentary, pathetic lapses with the sense that it just wasn’t fair that I had this stupid disease. Why not someone genuinely evil--like Karl Rove, or Kenny G, or whoever is quarterback for Dallas this year?

In all honestly, most days I’m too worldly to let myself feel too sorry for myself for too long. Usually all I need are a few seconds to reflect on the fact that nearly 2 billion or so of my "neighbors" are suffering far more than me (not that it's some perverse, masochistic contest) simply because they were born in the wrong places, at the wrong time.

But now, just a little more than a year later, these past few weeks, things are different. I’m not feeling sorry for myself or wrestling with questions of justice. I don’t think anything is unfair. I'm pretty much resigned to life as an earthling being just what it seems--not quite random, but certainly not fair.

Nope, this time around I’m just plain pissed off. I've got all kinds of reasons, like that I have to go through all of this crap again and then again, again. But none of those reasons satisfy my mind. I'm angry, because I don't wanna. But mostly I'm angry just because.

That and I'm terrified.

Not afraid like the evangelist wants you to be when he paces the platform of his campmeeting or church, all sweat and matted hair, asking: "If you were to leave this room tonight and be hit by a bus..." (what do preachers have against buses, by the way?)... "are you sure you'd be ready to meet your maker? Do you know where you'd spend eternity?"

That's easy. I believe in grace, in mercy, in a God anxious to smother his children with loving-kindness.

I believe in what Paul calls "the hope of glory"--and it has almost nothing to do with Jesus' ability to take a good whooping. (Now out in DVD--2&1/2 hours of 2 & 1/2 days before what matters most.) Nope, I'm ready to go because I believe in the resurrection.

My answer to the preacher?

I believe I'll spend eternity here.

Only better.

I'll slap my old friend John Walmsley, on the back, ask him to throw me my 5 Iron and then I'll hit that puppy 190 yards. John, who died of MD just before turning 50 in 1989 and who hadn't walked since he was about 10, will look over and laugh at me because I'm wasting the Kingdom of God on a golf course, run over to his car--he always wanted to drive--hop in, and just before turning on the stereo but after putting the top down, he'll look back at me and ask: "you bringing Sheri to the big Supper tonight? I hear there's a dance afterwards."

I believe this, honestly and truly, and I've never winked once while saying so during the Creeds.

Yep, I’m ready to go.

Death be not proud tho' some have called thee...

It's just that while I'm ready to go, I’m just not ready to say good bye. Not even close.

I’m not ready to go because there are more three hour meals to linger over and glasses of expensive wine to raise in toast and celebration.

I'm not ready to go because I want to spend many more Autumns celebrating the intoxicating depth of flavor in a ripe, firm tomato and the simple beauty of that tomato eaten with a bit of extra virgin Olive oil and a bit of fresh Basil pulled from a plant that I actually grew.

I'm not ready to go because there are institutions of the Irish and British and Flemish and Belgian and just plain dingy varieties--whether in Nashville, Philly, London, ON, Toronto, Santa Monica, West Hollywood, Americus, Windsor, Detroit and even Europe--where I have yet to sit with my best friends and laugh and sing and weep and read aloud, finding something off the godly in all that involves the pasta-like limberness found only in a hug at closing time.

I’m not ready to go because there remains great joy in breathing deep the aromas of feasting on the fated calf, drinking beers made with wild, natural yeast that blows from the rolling meadows of the Alsace autumn into the open windows of a Trapist monastery.

I'm not ready to go because I've never been to Europe.

I’m not ready to go because I’ve got carpets to yank from under your feet, and I’m not ready to go because I’ve got a notion that I might be able to tell you of a better place to land.

I’m not ready to go because I’ve got slightly off-color jokes to whisper to my father and never tell my mother.

I’m not ready to go because I want to write their eulogies, and I don’t want them to have anything to do with mine.

I’m not ready to go because I need to kiss my wife more often, to spend more time in bed with coffee, the Times, Coldplay in our CD player, and the morning sun filtering through the windows, even as we decide to get rid of the coffee and paper because there’s better stuff to do.

I’m not ready to go because I want more time to yell and scream and holler about the obscenity of throw away toilet brushes, McDonalds more than once a month, pre-made, crust cut, pressure-sealed, Wonder Bread Peanut Butter & Jelly sandwiches, and a diet that makes you eat only the food that made you fat in the first place.

I’m not done because I’ve yet to muster the courage to walk through Norman, OK or Wheaton, IL or even Wayne, PA, weeping & laughing and praying and mocking, all in hopes of finding a way to to call ourselves out from our preoccupations and perversions and warfare and to find begin to prepare a way to be something even close to faithful.

I’m not ready to go because there are still too many Christians that feed our anger with vengeance and not kindness, who claim our faith should make us wealthy, but not generous, who feeds and nurture a sense of entitlement that justifies walking past those who have none when you’re on your way to buy your eighth or ninth.

I’m not ready to go because I haven’t done enough to help us understand that simple living is not ugly living, that the balance to the decadence of North American entitlement is not a shapeless hemp dress, Nicaraguan art, sandals made of recycled truck tires or used, medium brown sedans.

I’m not ready to go because I want to find a way to live as a servant to the gaggle of ditsy, indistinguishably blonde Eastern University undergrads who have become our new, noisy, neighbors, who seem to begin to make noise only when Sheri or I decide to go to bed.

I’m not ready to go because I’ve other stories to tell, yearnings to map, visions to chronicle, books to write--better stories than the stupid ones with Cancer in them.

I’m not ready to go because I have not fully expressed the depth of hatred I hold for Ryan O’Neal and Ali McGraw, Barbara Hershey, Bette Midler, everybody in Steel Magnolias, Brian Piccolo, and every other fictional or real-life literary figure who has cancer or is dying from it, just to make me cry.

Screw “Love Story.”

Dammit all, I’m not ready to go because I had so wanted this note to be a happy follow-up to my last narrative, over-flowing praise and amens because we'd turned a corner good, and we could sigh with relief that Jon-Paul’s amazing gift of a trip to New York City was not a "just in case" favor, and then bore yor with stories about sightseeing and loitering and grazing over the better Midtown “Happy Hour” menu’s (the best way, by the way, to get cheap food at very expensive restaurants), views from our parkside room and feet and hips not hurting even after several hours in Barneys and Saks and anywhere else the Spirit moved us, looking for something that Sheri could wear to my nephew’s wedding a few weeks later.

We wanted to tell you the incredible story behind the surprising call we received from Mario Batalli’s delightful secretary Pamela. (And yes, if you’re wondering it was that Mario Batalli, of the chef’s clogs, knee socks and iconoclastic, decidedly un-bam!-like-TV persona on Food Network)

I wanted to tell you about our time with friends from Georgia at the wedding of our Habitat friend Kim and her partner Maria, all in Niagara on the Lake.

I wanted to recount brunch the next morning with my three best friends from my EPBC/ Huron/ London days--Bob, Mark and Chris--along with their amazing spouses/partners Julie, Bill and Sue--and tell you in the best, breathless way I could conjure how good and deep and never-ending a gift such a godly, ribald, heart-crushing friendship can be.

I wanted to take you to Hamilton for my nephew CJ’s wedding (to the luminescent Alison) later that same day, and let you join with us in the joyful laughter, tears, prayers and (gasp!) dancing--as even on a bum hip/leg I took my mom out on the floor for a minute, just to say it had been done.

I even planned to construct a long tirade for you about how these twenty-something kids wouldn’t know a good dance compilation if it snuck up on them with a white three-piece suit in one hand, a mirror ball in the other and James Brown’s cape over it’s shoulders and bit them in the ass. I mean, C’mon, CJ! Everyone knows that Macy Gray, The Supremes, Foreigner and, yes, the Village People will get ‘em out on the floor.

I even wanted to tell you about how I’d been invited to a few days of teaching in October to the Coalition of Christian Colleges and Universities’ “Music Industry Semester Intensive” in Martha’s Vineyard with my dear friend, mentor and world’s greatest curmudgeon Tom Willett.

But now, faced with the news of my rocketing counts, these narratives and a few others have to wait (tho' I PROMISE you'll get a fun little journey about NYC soon!), and instead, we've had to re-arrange our priorities for a while, in order to accomplish a few things of a bit more import.

****

The afternoon we learned about the big jump in my counts, we called the big Myeloma Institute in Little Rock, Arkansas and began to plan to get me there right away--as early as this coming week, in fact. It was pretty encouraging at first, too, and things seemed to be well in hand (I was going to have the guy--Dr. Bart Barlogie--who runs the thing be my consulting doctor) until we had a long talk with the assistant director of the program, who told us a couple of things.

First he looked over my charts and recent tests and told me, with raised voice and not a little bit of exasperation, that their consultation would certainly demand I avoid the mini-transplant ("it is barbaric!"), but rather get me on a chemo regimen to even out, then reduce my counts, eventually proceeding toward another stem cell transplant--a course of action that Dr. Luger had suggested last July would be unlikely here at UPenn.

The other bit of news, however, was that the cost of this consultation in Little Rock (without any treatments or our travel and lodging expenses) would be about $25K, and since our insurance company would be "out of Network" at this hospital, our "out-of-pocket" costs for those four days would be about $10-$12K--this at a time, due to an administrative snafu with one of my clients and the pit of literary quicksand my ghost-writing project has become, when I haven’t been paid for any work in several months.)

The decision was easy.

We would work hard to figure out what to do next, to get second opinions, to beat this stupid thing, but for now at least, it would go on without Arkansas.

Two days after my phone conultation with Arkansas, we met with Dr. Luger (9/3), and talked to each other with great candor about our desire for a second opinion, the narrowing options before me, if we should go to into debt and go to Little Rock, how long I had before we needed to begin some kind of agressive therapy without harming our ability to later launch a thorough, aggressive attack on the disease.

Dr. Luger was, as always, amazing. Here's what we ended up with:

1. First, they too no longer considered me a good candidate for any kind of a Bone Marrow Transplant, largely because my counts are too unstable and a BMT takes at least three months to work. (In a BMT, the bone marrow takes all that time to decide if it likes the place, get a few window treatments, buy a sofa and a love seat, that sort of thing. For someone like me, during this time two things can happen. First, if the marrow decides it doesn't like living in your body, it flies off the handle and tries to kill everything around it, much like it used to do at its old home to say a common cold or a slight case of food poisoning. This is called "graft-host" disease. Second, because it's preoccupied with deciding whether it likes the neighborhood, it neglects its duty to kill Myeloma cells, which then gather in the kidneys, eventually making it impossible for them to work properly--failure. If this happens, the options for combating the MM become very, very limited.)

2. Regardless, Dr. Luger feels that I should get on another strategic therapy--a smallish chemotherapy based on Arsenic, perhaps--within three to four weeks, and the moment we get one to work, we’ll begin prepping for another stem cell transplant. (And, yes, btw, they do have lots of extra stem cells from the first one in the fall of 2001.) That process will be pretty much like the last one, except that I know how miserable I'll likely be, and the doctors should know to listen to me sooner when I tell them to get me off of the antibiotics ASAP.

3. Finally, She encouraged me to take a week or so to relax a bit and maybe look around here for a second opinion--since, to be frank, this was pretty much it until I was done with the stem cell thing.

It was a good meeting.

Over the the last three years there have been many times when I’ve despaired for my life--but in most situations, that passed like my self-pity. But the past few weeks since July, and certainly in the 48 hours between learning of my rocket-propelled counts on September 1 and seeing Dr. Luger on the 3rd, the fearfulness has been near constant.

I'd never experienced anything like it.

But about half way through our meeting with Dr. Luger on September 3, however, something changed for me.

There, in the most mundane and non-spiritual and un-glamourous context imaginable, I knew it--that for the first time in two days--in nearly 6 weeks, really--I felt like I might not die.

It was a good feeling.

Released for now from the grasp of imminent death, we could move on...

And so we did.

I began making plans for a week off, and instead of heading south, I’m flying north and home to Canada.

Tomorrow (9/11) I'll leave for a week-long writing retreat in Ontario, with nights reserved to go with my best friend Bob and my nephew CJ to the Toronto International Film Festival, along with, next Friday, a quick trip to London (ON), my home town, for a big old gathering to see as many people as I possibly can--probably at the wonderful English pub called "Chaucers" where we found ourselves frequently in the undergraduate years.

This little trip will, along with being a chance for me to get out and get away and get some things done and catch up with those I love, serves the even greater good--by giving Sheri a break from me.

We were made to be together, I believe that now far more than I did before we were sick--but only provided she can have a few days, once in a while, without me. When I was working and traveling all the time--no problem. But now that I'm home all the time... it's a bit harder on her.

And so, off I go, with her blessing, and perhaps her hand slapping my backside as I leave.

As for you--if you've gotten this far, holy cow you deserve a medal. Thanks.

Please keep praying. We need it.

And please keep praying for those who are without a voice, without power, without an advocate to stand on their behalf.

Be that advocate.

One day soon I'll tell you just one of the many, many stories I've heard over the past three years of those of you who have taken this challenge to use the thought of me to remember those who are marginalized. It's amazing stuff, and it, more than anything else in my life, before or since all this sickness crap, gives me a reason to believe.

I love you.

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