Deja Vu again: Ozard Transplant postponed indefinitly

Ozard Update, October 17, 2005

Deja-Vu All Over Again

It seems like forever since the last full-fledged medical update, and as I was, until this past Friday, scheduled to begin the long process of my long anticipated, as well as dreaded, Bone Marrow Transplant, it seemed like a good time to put together all the details about that procedure down for you so you’d know what was going to be done to me (and, in this case as well, for me).

It was a good plan, but like many of our best ones, this one was ripped from our hands with not a little violence. Yep, just like last year, the Ozards are once again on the Multiple Myeloma Roller Coaster. And as you know from last year, this roller coaster can’t keep a date.

As you know, I was scheduled to start treatments toward the BMT on October 18th.

Well cross it off. It’s “on hold” indefinitely.

The Best Laid Plans, part one Wouldn’t you know that they’d go and do this to us (never mind the unnamed, unknown 34 year-old would-be donor)? It was going to be such a cool story of joyful celebration. 50 days of nastiness in exchange for, well, at least a few extra years.

In prep for the day I went into the Hospital (Day -9, btw) Sheri and I had loosely planned many little events along the way to remind us that, amid all the scurrying and prepping and planning for the transplant, and behind all the increasing symptoms and wear and tear of the disease and especially the cannibalistic fear, we were loved and held and cared for and that (this one, this year, for some reason, seemed to matter to me most) what I did, however small, mattered. It started with a dinner out with some of my nurses (see “A Toast to My Caregivers”) and then, the first weekend of October, a cooperative “kidnapping” of me and Sheri (technically she was one of the kidnappers) to Nashville (aka: NashVegas) where Steve Taylor, Nick Giaconia and Dave Palmer executed a fairly major party-slash-mini-concert, all of which both completely blew us away, to the extent to which I still have a hard time talking about without getting all puddly. (You can read more about it on the home page under the very apt title: Short Teaser: Marrow is the Way!) I even promise to write about meeting Steve and Debbie Taylor’s new daughter, Sara, and what a glorious, life-changing moment that was for me.

And of course I’ll write bit about our own, “Bubble Boy” party last weekend, and how Holly Benyousky, President of Street Level Artists Agency in Indiana and the ultimate “energy giver” I know, came early to plan and then cook a bit on Friday, then take us to our favorite restaurant in the area, Nectar, then had to leave early Saturday (before the masses arrived) to care for her husband Frank, a remarkable professor at Grace College who had an outbreak of kidney stones.

I’ll write about having around 50 of my best friends stay well-passed the planned curfew but not caring.

I’ll write about a menu that somehow strayed from the initial notice of “Tapas and other small plates” to instead a buffet of pulled pork BBQ (it was my first crack at it and by all accounts, including the former vegetarian Sheri who has only recently warmed to pork, it was very good), crostini with filet mignon, blue cheese and julienned roasted red pepper, my now growing famous (if not consistent) BBQ’d baby back ribs, some assorted gourmet Italian and Greek sausages (yet another reason to visit South Philly on a regular basis), huge amounts of roasted, raw and marinaded veggies…. And of course, people brought lots of glorious things to drink, from fine vineyards of Niagara to the foggy, wonderful hills of Napa, not forgetting the malt and hops at the heart of a fine beverage like a Newcastle Brown or the several Canadian beers that I so enjoy (I did not indulge much, those of you who worry, as I know that (a) I needed to stay hydrated, and (b) morphine is a far better mistress). All of these things made the whole thing a bit easier to penetrate, (especially since people from so many different places--both geographically and socially and spiritually—together). And so, to our delight, we ended up with a honest-to-gosh clique-free party, where people came, enjoyed each other and stayed much longer than I would have imagined anyone would want to--.and it was a good, good thing. (The guests even left the Finster sculpture and the new Ingram fish print in place. Snicker.) It really was a fantastic party, one that I really wanted, no, needed that day.

So, yes, at some point I’ll write in the dignified, yet somehow common, even pulpy style of Jane Austin of the many who came through our little door that night to wish me well, offer their support to Sheri and then join in the feasting and by using such high-brow, timeless prose I’ll show people that it was, truly and really, a very, very cool night, one that along with the Nashville thingy, makes me at once makes me full of pride and the deepest humility. We may not have much money, but we’re rich in friends…. It’s a cliché of the worst kinds, but I’ve never realized the extent to how true it was.

And we are grateful.

A Chronicler of Good Works and Great Songs At some point I’ll write about the next day too, perhaps in the style of William S. Burroughs abut the next day (Sunday, Oct 9), when Sheri & I did a late breakfast at Meredith’s with my best friend from Jr. High and High School, Arthur Wuerch (pictured here)

and my buddy from NYC (but you know him from TV’s VH-1 & Canada’s MuchMusic), Bradford How (pictured here).

I can’t begin to say how good it was to catch up with these guys. Brad has become a very dear friend in the last two years, and Art, who was truly the best friend a guy could want through high school (even tho' we’ve only managed to see each other about five times since our graduation.) I can't say how much I love that guy, and that he drove, alone, from Ontario to be at a party full of complete strangers, well....

I’ll write about the weekend that saw my nephews Curtis and CJ reunited for the first time since their father’s funeral last February (something that made the weekend that much more special) and the fact that I hadn’t been alone with Curtis since August ’04--long before his father died. And while I just had a night out with CJ at the Toronto Film Festival, to be able to spend time as just the three (or six) of us was an awesome thing.

I’ll maybe switch styles and write like Mario Puzo to talk about after breakfast when we dedicated the entire rest of the day to time with Curt and CJ and their wives Cristy Rose and Alison, respectfully. It was an extraordinary time of some very typical Philly Tourism--South Philly, Pat’s King of Steaks and Genos (they said they couldn’t tell them apart in the official Ozard taste-off), the Museum Steps, The Melrose Diner etc.--and one too intimate, in all honesty, to share with anyone. What I can share is that it made this Uncle’s heart about as full and proud as it can be, and that pride carried us through dinner at the grand old Italian dame Ristorante Primavera (compliments of their mother, Susan) and lasted well into the evening, allowing us to sip our coffee at home and talk until Ali and Cristy Rose arguing for more poker (for shame!). We declined, too exhausted to go one step further, even on a bus named “Fare Thee Well!!” and so we called our night a night and sent our two couples, full of hope and energy and grace, back to their hotel

Pride As I said “fare thee well” to these two young men I prayed for all those years ago when they were first born, and now, 25 and 23 years later I saw men far better and stronger in the face of adversity than the faith my prayers could ever summon.

And so, after a couple of weeks of friends offering their feeble prayers for me I was energized and full of faith myself, and took to the last task of the day--despite eating out that night and for lunch we still faced a sink full of dishes and the basic carnage of a weekend’s worth of good clean fun--with great optimism for the coming week (10/10 fwd). And so, I went to bed (assisted by my good friends Mr. Ativan and Mr. Percoset), and fell into log-like sleep.

The Best Laid Plans
When I awoke, my first thoughts were not of the few forms that I needed to fill out before the 18th or the errands I needed to run or the bloodwork that needed to be drawn, or anything else mildly responsible. No, when awoke all I could think of was that I felt like I'd been hit by a truck—in short, exactly how I expected to feel after all the planning, preparation and rip-snorting fun that went into our little “Bubble Boy” affair. That next morning I woke up feeling, well, like I’d been run over by a truck. I decided, having been run over by said truck, to not do any of my planned errands and lay low, but when later in the morning I started showing a fever, I called the doc's for advice. They said go to ER if it gets higher than 100. That took about 20 minutes, when I went 100.8; only another hour later I was running 102.6, and an hour after that, 103.2.

And so, we went to the ER at the lovely and delightful Paoli Memorial Hospital (and I’m not being ironic here at all), where, after admitting me (wait—wasn’t this supposed to be Sheri and my week of zen, where we would finish a bit of pre-transplant paperwork and then shut the door and turn off the phones so that we could hang out a bit or maybe go for dinner?) they poked and prodded me and asked me to take pills and IV and asked me to give them copious amounts of fluids of various kinds for them to introduce cultures into and see if they’d grow....

Now, with a 103.2 fever your first day in the hospital can be a tad disorienting. With a fever and the last 12 days of cumulative exhaustion, I was a wreck. For most of the first full day (Tuesday the 11th) I was in what can only be described as a comic, cosmic buzz.

“Dwight? We have another form, can you fill it out?... “…Uh, wha?”… “OK Dwight, I’ll fill it in, you just answer the questions. OK?” “ …Uh, yeah, but is Sheri here to help?” “No, Dwight, you’re on your own.” “… OK.” “Can we talk about your Grandmother’s history?” “Uh, yeah. She died of cancer at 89. There was this time when she and I were playing dominoes and she talked about how her brother gambled too much.” “Dwight, perhaps we stick to one word answers for now.” “But stories are the best part”…

And so it went. Despite my pathetic slovenliness, the doctors and techs and nurses did their jobs and the tests and pills and cultures did theirs too, and so on Thursday morning Dr. Hoessly, along with the doctor from “Infectious Diseases” could come into the room and give me the basics, and here they are.

At first they were looking for the cause of the fever - for something simple like a viral infection or a simple bacterial infection that they could fight with antibiotics.

No, we have to remember that this is my case, and so far nothing else has been simple, so why should this be? Right?

Nope, sometime on Wednesday at Paoli Memorial they found some weird, disturbing spots on my lungs, spots suggesting one of three things.

Deja Vu?
First, we were told what we were told last year. Last year I got a CT Scan that showed similar patterns, and given this, we wanted to rule out beyond a shadow of a doubt that what they were seeing this year wasn’t the same thing, especially since getting that final answer last year was the culmination of a long and exhausting week-long wild-goose chase that ended with Sheri and I having been beaten up emotionally and treated like children. The final diagnosis/reading then (Oct. ‘04) was that those “white spots” on my lung were scar tissue from stuff when I was a kid, and none of it would bother us or the procedure.

So, with last year’s little fiasco stuck in the backs of our minds like the 99th wing in 100 wing-eating contest sticks in your throat, we went about our way to make them look at both sets of film over and over to make sure that their white spots on lungs were indeed different from ours. And wouldn’t you know it, dang, they’re not.

No easy out for me this time.

"...the natural course of an agressive disease..."
The second option was that they could be the “natural” evolution of my Multiple Myeloma, but there were no other markers at all to suggest that. And oddly, had the markers been there it would have been only more impetus to move forward with the BMT. It would have sucked to have more cancer, but clarity has its price.

Uh… Right?

That "Chest" Thing
The third option, and the last one too, was that these “little white spots” were evidence of a very specific fungal infection that MM patients are susceptible to.

Normally at this point a doctor would call a surgeon and arrange to have my lungs biopsied. That biopsy would be taken in one of two ways: either by what Sheri calls “that ichy thing that they put down your throat on ER and try to kill your singing career with,” or by a fairly simple surgery where they only barely but actually “crack your ribs” and then go into the lungs and take a sample. In most cases, either option isn’t that bad—except that this is Ozard, so it can’t be easy.

And here’s that rub: since I’m effectively free of platelets (I was 7 on Monday to the recommended 150), I can’t get cut because I can’t stop the bleeding when the bleeding starts. Nosebleeds (you remember nosebleeds, boys and girls, don’t you?) can kill me. Small things, like nicking myself shaving, can seriously ruin a day. So, you can understand some caution with the whole biopsy route.

Faced with this quandary, the docs conferred and decided that more tests and blood and fluids and collections at HUP were in order, so on Thursday afternoon I was shipped off (via an ambulance whose driver actually asked me for directions to the hospital—yikes!) to University City where I was safely soon cocooned in Rhodes 7018, being asked more questions again and getting xrays and CTScans and given more antibiotics and being introduced to the world of anti-fungals.

Early the next morning my wonderful testing all complete, I was awakened by one of the underlings of the Attending, Dr. Porter, who told me that they was fairly sure that the team (Hematology, BMT Transplant Team, Infectious Diseases, Pulmonary something-or-other) had determined that the preponderance of evidence being so great, they could go forward treating the fungal thing in the lungs on presumption with a very specific, very expensive medicine. The only other bit of information was that they were also reasonably certain that I have a small rumbling pneumonia in the bottom of both lungs--something that I’d been insisting I had since late May.

And so, with that said, I spent a manic, happy day in the hospital and then went home at 6ish with my lovely wife. A day later I’m happy to be home still, and still trying to let this last bit of news work itself through…..

The BMT is on hold.

It could happen in 2 or 3 weeks, or it could be a couple of months.
We don’t know.
It all depends on taking the pills, the pills not killing me--just one more thing that fills me with fear, as I don’t normally do all that well on antibiotics (cf: November 2001 or even last December after my 2nd Stem Cell Transplant.)

And in the meantime, we're home, enjoying each other, & I’m eating lots of raw vegetables, and lots of sushi too--stuff I won't be able to have for at least 5 months after the BMT.

And I’m praying, and glad you are too. Please keep it up. We need it, bad

dwight & sheri

PS: Now and as always, please, every time you say my name, ask God to remember another as well--one whose name was never spoken because by the time they were born their parents had either died or abandoned them. Be their voice, their advocate and not just to God alone.

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