Recycling a holiday classic
HOLIDAY TRADITIONS come and go, and one that has certainly come and gone is the annual airing of “May You Always,” a two minute, forty-two second spoken holiday greeting performed by legendary DJ Harry “The Morning Mayor” Harrison and broadcast regularly on New York’s WCBS-FM 101.1 oldies station.
Although it hasn’t graced the airwaves in a good twenty years or so, in its day “May You Always” garnered a cult following among those who snickered at its shameless sentimentality, as well as those who waited eagerly for its first airing each year to bask in the glow of Harry’s genuinely warm and heartfelt delivery. A user by the name of “Sock Hop Saturday Night” even went so far as to post a recording of “the original Amy 45 (the non-politically correct version)” to YouTube in 2009.
AS YOU MAY HAVE surmised from last week’s songfest, we here at AltiM@c are powerless to leave a perfectly good holiday message unsullied by the spirit of parodies present. In fact, I went so far as to pen and even record my own Apple-flavored version of “May You Always” way back in 2005. But since precious few of you have known me for that long, I feel justified in recycling it for 2014–with a few updated tech references to make it seem all shiny and new. So here’s take #2 on this long-lost holiday classic. Enjoy!
May You Always (MYA_2014.mp3, 3.92MB 192kbps MP3 file)
As holiday bells ring out the old year, and sweethearts kiss,
And Mac users struggle through the Yosemite and iOS 8 updates
May I wish you not the biggest and best technology has to offer
But the small victories that make owning all these gizmos worthwhile.
Sometime during the New Year, just to prove you can do it,
May you manage to update Adobe Flash Player without calling anyone for help.
May you find a little island of time to actually read that “Read Me” file,
Or to delete all those duplicate pictures from your iPhoto Library.
May you be able to explain the difference between POP and IMAP without Googling it
May you go through an entire day without once looking up a password
May you know the correct answers to all three of your online banking security questions
May all those people who told you to back up refrain from saying, “I told you to back up.”
May your iPhone enjoy an entire year without being dropped into a public toilet
May that expensive AppleCare support contract rescue your MacBook Pro from an untimely death.
In a time of rampant viruses and spyware, may your Mac be rampant-virus-and-spyware free.
May you be able to pass your old Macbook on to your kids, so they quit screwing up your new iMac.
For a change, on a day when your Mac seems to be working as advertised
May a friend or colleague call on you for help with their computer!
When you zap your PRAM, may it stay zapped!
And, if you happen to mistakenly delete an important file
May you be able to restore it from a Time Machine backup–without calling me to walk you through the process.
May that long and lonely night be brightened by a visit from a FiOS repair technician.
When buying that new iPhone, may you discover that your old one is worth hundreds on eBay–or $10 on Gazelle.com.
When you crash in a 28-page Word document without saving, may there be no one watching to laugh at you–or feel sorry for you.
And sometime soon, may you
Post a video to YouTube successfully
Hold less than five minutes for Comcast tech support
Be told by your grandson that your Internet is “wicked fast”
And be mentioned by Tim Cook in a keynote address.
More than this, no one can wish you.
Happy New Year from the employees and staff of AltiM@c Consulting!
In the aftermath of Hurricane Sandy, the Long Branch Arts Council announced in February that they were seeking submissions from New Jersey poets of all ages to write about their personal experiences or impressions focusing on the events of this “superstorm” and its aftermath. Those submissions will become part of an anthology entitled “Poetic Voices In Response To Hurricane Sandy.”
Since I’ve had what I consider to be a somewhat unique “Sandy” experience, I figured I’d submit my story to them, and also share it here with you. Plus, all that writing won’t go to waste should the powers that be at the Arts Council decide that my submission is not up to their standards…
THE KENNEDY ASSASSINATION (1963) is a prime example, although you’d probably have to be pushing 60 to have a specific recollection of that one. For those like me, who’ve been around for only a half-century or so, the Challenger space shuttle disaster (1986) certainly qualifies, as does the death of John Lennon (1980) and most recently, the terrorist attacks of September 11, 2001.
Over the course of anyone’s lifetime there are events such as these, events of such significance that it becomes possible to recall precisely where you were and what you were doing at that very instant.
Psychologists call these vivid recollections “flashbulb memories” because, like a camera’s flashbulb going off, they briefly illuminate and capture a moment that is typically both surprising and consequential. These unique recollections can be extremely detailed, highly accurate, and also very difficult to forget.
For me—and doubtless for all residents of the Jersey Shore—it’s hard to imagine anything more difficult to forget than Superstorm Sandy. Due to circumstances unique and somewhat beyond my control, I’ve managed to amass an entire album of these flashbulb memories from the events of that time—in spite of the fact that those recollections have little to do with the storm itself, or with its aftermath.
Then again, you might say they have everything to do with it.
ON OCTOBER 29, 2012, as Sandy made landfall along the southern N.J. coast, I was not doing what every other Bradley Beach resident—including my wife Donna and our two cats—had been advised to do, which was to grab some valuables and a change of clothes and head for higher ground.
I’d like to say that this was due simply to a can-do spirit and a steely determination on my part to damn the torpedoes and ride out the storm—sans heat, electricity and high-speed Internet. But that’s as far from the truth as I was from our condo at the time, so the decision to stay or to go was out of my hands.
What is true is that pretty much everything else was out of my hands as well, and on that morning I was an hour or so away from the Jersey shore, having spent the last few months riding out a storm of an entirely different nature, and preparing anxiously for the worst it had to offer.
Specifically, I was staring out the window of the bone marrow transplant unit of New Brunswick, N.J.’s Robert Wood Johnson University Hospital, awaiting the arrival of a shipment of HLA-matched stem cells provided by a most gracious, generous and compatible donor from the state of California. I had been diagnosed with an acute myeloblastic leukemia earlier that year, a type of cancer that can be temporarily controlled but not cured via the multiple rounds of chemotherapy I had undergone over the summer.
So for me, a transplant of stem cells from a compatible donor was the only option for long-term survival. My doctors, having determined this even prior to my first admission and chemotherapy treatments that July, had already begun a donor search. My two sisters were unfortunately ruled out early on, much to our collective disappointment.
EVENTUALLY TWO POTENTIAL DONORS were identified; the first disqualified due to an incompatibility in blood makeup but the second found to be fully compatible. Once this donor had been cleared, I immediately underwent further chemotherapy in order to obliterate every trace of my own bone marrow, along with the majority of my immune system.
This process, known as myeloablation, would allow the donor’s stem cells to be transplanted into my body without being rejected as they otherwise would have been. If the transplant “took” successfully, the donor’s stem cells would create new hematopoeic (blood-producing) and cancer-free bone marrow, as well as an entirely new immune system to replace what was left of my own.
As with so many things in life, timing is everything. The myeloablative chemotherapy I underwent in preparation for the transplant left me not only without a functioning immune system, but also without the ability to generate blood on my own. I’ll leave it to your imagination to ponder the long-term prospects for an individual allowed to remain in such a state, but suffice to say there is a fairly narrow window within which to initiate the transplant; i.e. the donor’s stem cells, which have a relatively brief “shelf life,” need to arrive on schedule before they—or the recipient—expire.
Yet for transplants like these, the timing is typically not an area of great concern, given that a cross-country flight can be accomplished in the space of an afternoon and that stem cells intended specifically for transplant remain viable for a period of at least a few days. But let us consult our flashbulb memories of that time and recollect that at that very moment the entire East Coast was being hammered by a “superstorm” and that power was out for millions, airports were closed to arriving and departing flights, and gas stations were either shut down or open but without any gas to pump.
Given that, it doesn’t take a Ph.D. (with all due respect to the brilliant and capable Roger Strair, M.D. and Ph.D.—and my oncologist at RWJ) to realize that it was going to require nothing less than a Herculean effort to deliver anything—much less a package of living human cells with a relatively brief expiration date—from southern California to New Brunswick, N.J. under those conditions.
WHICH BRINGS US back to the morning of October 29, 2012. From my perspective, there were actually two storms wreaking havoc—one outside the window of my hospital room, and one inside of, well, me. As the hospital was fully equipped to weather an external storm of even Sandy’s magnitude, their generators had kicked in within minutes of the first power outage, and I found myself lacking little in creature comforts compared to the millions around me without heat, hot water, electricity, gasoline—or in some cases, even a place to live. For me, experiencing the effects of Sandy was akin to watching a documentary on the event—the chaos wrought by the storm all passed quietly outside my window as if on a movie screen, with little effect on my daily routine.
At the same time, however, I—and I assumed the hospital personnel as well—were at least somewhat concerned about the prospects for a timely delivery of my prospective stem cells to the bone marrow transplant unit. As was my wife, who, being the more pragmatic member of our family, had already concluded in my absence that a friend’s offer of temporary housing in their conveniently-untenanted apartment in Middlesex County was without question the most sensible option for her and for our cats, a decision with which I agreed wholeheartedly.
Although the apartment complex was subject to the same power outage affecting the area around the hospital, it was quiet, safe, and at least somewhat warmer and drier than most of the homes on the Bradley Beach oceanfront. One crisis averted, but as Sandy’s impact on the local infrastructure continued to worsen over the next few days, I grew more apprehensive about the timely arrival of the stem cells. If the nurses and specialists with whom I had daily contact were equally as concerned, however, they did little to betray those feelings and were quick to reassure me that they would indeed arrive, if not precisely on schedule, at least within the window of opportunity for a successful transplant.
Which they eventually did, via a re-routing of the aircraft carrying the shipment to Buffalo, N.Y.—the nearest airport open for business—followed by the odyssey of an extremely dedicated and resourceful courier who managed to deliver the cells from upstate New York to the hospital a mere one day behind schedule, in spite of closed roads, downed trees, non-functioning traffic lights and a limited selection of gas stations along the way. The transplant, delayed by exactly one and one half days, took place on Halloween—perhaps a fitting coincidence given the amount of bloodletting involved on both my and my donor’s parts in preparation for my eventual resurrection.
WHILE SANDY REMAINS the common thread uniting our collective recollections of late 2012, I feel reasonably confident in stating that my own “flashbulb memories” of that time—when contrasted with the majority of Jersey shore residents—are as different as they could possibly be.
And precisely the same.
With apologies to William Sydney Porter
NINE THOUSAND, three hundred and ninety-nine dollars. That was all. And five thousand of it was in hundreds. Hundreds saved three and four at a time by skimping on holiday tips to the doorman, postman et al and by strategicallly deferring a select few visits to the spa at Madison and 55th, until one’s cheeks burned with the silent imputation of parsimony that such close dealing implied. Three times Della counted it. Nine thousand, three hundred and ninety-nine dollars. And the next day would be Christmas Eve.
There was clearly nothing to do but flop down on the Alessi leather loveseat and howl. So Della did it. Which instigates the moral reflection that life is made up of sobs, sniffles, and smiles, with sniffles predominating.
While the mistress of the home is gradually subsiding from the first stage to the second, take a look at the home. A fully-furnished apartment on Central Park West, at $4800 per month. It did not exactly beggar description, but it certainly had that word on the lookout for the mendicancy squad.
In the vestibule below was a letter-box into which no letter would go, and an electric button from which no mortal finger could coax a ring. Also appertaining thereunto was a card bearing the name “Mr. James Dillingham Young.”
The “Dillingham” had been flung to the breeze during a former period of prosperity when its possessor was realizing in the area of $5000 per week. Now, when the income was shrunk to $3500, though, they were thinking seriously of contracting to a modest and unassuming D. But whenever Mr. James Dillingham Young came home and reached his apartment above he was called “Jim” and greatly hugged by Mrs. James Dillingham Young, already introduced to you as Della. Which is all very good.
DELLA FINISHED her cry and attended to her cheeks with the powder rag. She stood by the window and looked out dully at a gray Weimeraner being walked on a gray leash by a gray-haried matron wearing a gray Mark Kaufman fur. Tomorrow would be Christmas Day, and she had only $9,399 with which to buy Jim a present. She had been saving every dollar she could for months, with this result. $2000 a week doesn’t go far. Expenses had been greater than she had calculated. They always are.
Only $9,399 to buy a present for Jim. Her Jim. Many a happy hour she had spent planning for something nice for him. Something fine and rare and sterling–something just a little bit near to being worthy of the honor of being owned by Jim.
There was a tall and narrow door mirror of questionable accuracy, with a dusky brown frame, mounted on the inside surface of the walk-in closet door. Perhaps you have seen such a mirror in a $4800 apartment. A very thin and very agile person may, by observing her reflection in a rapid sequence of gesticulations, obtain a fairly accurate conception of her looks. Della, being slender, had mastered the art. Suddenly she whirled from the window and stood before the mirror. Her eyes were shining brilliantly, but her face had lost its color within twenty seconds. Rapidly she pulled down her hair and let it fall to its full length.
Now, there were two possessions of the James Dillingham Youngs in which they both took a mighty pride. One was Jim’s graphic design business–a business he had built from the ground up over the years, and which numbered just south of ten steady clients, two of whom supplied the lion’s share of the Young’s income, with the remaining seven providing a still-considerable contribution to the Young’s bottom line.
The other was Della’s hair. Had the queen of Sheba lived in the flat across the airshaft, Della would have let her hair hang out the window some day to dry just to depreciate Her Majesty’s jewels and gifts. Had King Solomon been the janitor, with all his treasures piled up in the basement, Jim would have walked by wirelessly accessing his .Mac email account while simultaneously crunching budget figures in Microsoft Excel 2004 each time he passed, just to see him pluck at his beard from envy.
So now Della’s beautiful hair fell about her rippling and shining like a cascade of brown waters. It reached below her knee and made itself almost a garment for her. And then she did it up again nervously and quickly. Once she faltered for a minute and stood still while a tear or two splashed on the New Zealand-wool Karastan.
On went her old Versace couture signature overcoat and hat. With a whirl of skirts and with the brilliant sparkle still in her eyes, she fluttered out the door and down the stairs to the street
WHERE SHE STOPPED the sign read: “Mme. Sofronie. Hair Goods of All Kinds.” One flight up Della ran, and collected herself, panting. Madame, large, too white, chilly, hardly looked the “Sofronie.”
“Will you buy my hair?” asked Della.
“I buy hair,” said Madame. “Take yer hat off and let’s have a sight at the looks of it.”
Down rippled the brown cascade.
“Two hundred bucks,” said Madame, lifting the mass with a practised hand.
“Give it to me quick,” said Della.
Oh, and the next two hours tripped by on rosy wings. Forget the hashed metaphor. She was ransacking the Web for Jim’s present. As RoadRunner cable modem service was not yet available in their building, Della was forced to struggle along with a 640K/128K DSL connection from Verizon which, contrary to the circuit’s advertised bandwidth, was capable of no more than 300-400K downstream even on a good day.
IN SPITE OF her DSL modem’s oft-sluggish response, Della found it at last. It surely had been made for Jim and no one else, and had just become available at the online Apple Store a few days prior. There was no other like it from any other computer manufacturer, and she had turned all of them inside out. It was, of course, the new Mac Pro: simple and chaste in design, properly proclaiming its value by substance alone and not by meretricious ornamentation–as all good things should do.
It was a workstation worthy even of his most valued of clients. As soon as she saw it she knew that it must be Jim’s. It was like him. Quietness and value–the description applied to both.
Nine thousand, five hundred and ninety-nine dollars they took from her for it, and she opted for the overnight express shipping. With the 15″ 2.3GHz Quad-core Intel i7 MacBook Pro he currently owned, Jim might be properly anxious about hauling an eighteen-month old laptop such as his to a client’s place of business. Grand as this MacBook Pro was when first purchased, he was often reluctant to concede in mixed company that it was a non-Retina display model, for fear that his tech quotient would be suspect.
When Della finally logged off her own 27″ 3.2GHz quad-core Intel i5 iMac, her intoxication gave way a little to prudence and reason. She got out her curling iron and went to work repairing the ravages made by generosity added to love. Which is always a tremendous task, dear friends–a mammoth task.
Within forty minutes her head was covered with tiny, close-lying curls that made her look wonderfully like a truant schoolboy. She looked at her reflection in the mirror long, carefully, and critically.
“If Jim doesn’t kill me,” she said to herself, “before he takes a second look at me, he’ll say I look like a Coney Island chorus girl. But what could I do–oh! what could I get with only nine thousand, three hundred and ninety-nine dollars?”
AT SIX O’CLOCK the following evening, the Bonneau du Martray chardonnay was chilling nicely in the beverage cooler, and the frying pan was on the back of the range hot and ready to cook the pecan-encrusted salmon filets from Wegmans.
Jim was never late. Della held the Mac Pro behind her back and sat on the corner of the table near the door that he always entered. Then she heard his step on the stair away down on the first flight, and she turned white for just a moment. She had a habit of saying a little silent prayer about the simplest everyday things, and now she whispered: “Please God, make him think I am still pretty.”
The door opened and Jim stepped in and closed it. He looked thin and very serious. Poor fellow, he was only twenty-two–and to be burdened with a family! He still wore the Gianfranco Ferre studio charcoal grey cashmere overcoat she had purchased for him nearly two years ago, and his LaCrasia Italian leather driving gloves were unlined.
Jim stopped inside the door, as immovable as a setter at the scent of quail. His eyes were fixed upon Della, and there was an expression in them that she could not read, and it terrified her. It was not anger, nor surprise, nor disapproval, nor horror, nor any of the sentiments that she had been prepared for. He simply stared at her fixedly with that peculiar expression on his face.
DELLA WRIGGLED off the table and went for him.
“Jim, darling,” she cried, “don’t look at me that way. I had my hair cut off and sold because I couldn’t have lived through Christmas without giving you a present. It’ll grow out again–you won’t mind, will you? I just had to do it. My hair grows awfully fast. Say ‘Merry Christmas!’ Jim, and let’s be happy. You don’t know what a nice–what a beautiful, nice gift I’ve got for you.”
“You’ve cut off your hair?” asked Jim, laboriously, as if he had not arrived at that patent fact yet even after the hardest mental labor.
“Cut it off and sold it,” said Della. “Don’t you like me just as well, anyhow? I’m me without my hair, aren’t I?”
Jim looked about the room curiously.
“You say your hair is gone?” he said, with an air almost of idiocy.
“You needn’t look for it,” said Della. “It’s sold, I tell you–sold and gone, too. It’s Christmas Eve, sweetheart. Be good to me, for it went for you. Maybe the hairs of my head were numbered,” she went on with sudden serious sweetness, “but nobody could ever count my love for you. Shall I put the salmon on, Jim?”
OUT OF HIS trance Jim seemed quickly to wake. He enfolded his Della. For ten seconds let us regard with discreet scrutiny some inconsequential object in the other direction. Five thousand dollars a month or twenty million a year–what is the difference? A mathematician or a wit would give you the wrong answer. The Magi brought valuable gifts, but that was not among them. This dark assertion will be illuminated later on.
Jim drew a package from his overcoat pocket and threw it upon the table.
“Don’t make any mistake, Dell,” he said, “about me. I don’t think there’s anything in the way of a haircut or a shave or a shampoo that could make me like my girl any less. But if you’ll unwrap that package you may see why you had me going a while at first.”
White fingers and nimble tore at the ribbon and paper. And then an ecstatic scream of joy; and then, alas! a quick feminine change to hysterical tears and wails, necessitating the immediate employment of all the comforting powers of the lord of the apartment.
For there lay The Combs–the set of combs, side and back, that Della had worshipped long since she had first seen them at Sotheby’s. Antique French hallmarked tortoise shell hair combs, mounted with 12 silver-set rose-cut diamonds from the mid-19th century–just the type to wear in the beautiful vanished hair. They were extraordinarily expensive combs, she knew, and her heart had simply craved and yearned over them without the least hope of possession. And now, they were hers, but the tresses that should have adorned the coveted adornments were gone.
But she hugged them to her bosom, and at length she was able to look up with dim eyes and a smile and say: “My hair grows so fast, Jim!”
AND THEN Della leaped up like a little singed cat and cried, “Oh, oh!”
Jim had not yet seen his beautiful present. She held the incredibly compact and yet immensely powerful workstation out to him eagerly upon her open palms. A 3.5GHz 6-core Mac Pro, with the obligatory 2.7GHz 12-core processor upgrade, plus the 64GB DDR3 ECC memory and dual AMD FirePro D700 (sporting 6GB of GDDR5 VRAM) additions. Sensing that Jim’s data storage requirements demanded as much capacity as could be made available, Della had also elected to add an additional 1TB of PCIe-based flash-storage.
As Jim powered up the device, the four USB 3.0, six Thunderbolt 2, two Gigabit Ethernet, one HDMI and two audio output ports seemed to flash with a reflection of her bright and ardent spirit. Or perhaps the Mac Pro’s design team had chosen to auto-illuminate each of the rear-facing ports whenever the unit was rotated.
“Isn’t it a dandy, Jim? They told me orders were already backlogged ihto February, but I managed to get one shipped here overnight. You’ll have to write a blog post for all your clients about how much faster you’ll be able to ge their projects completed now.”
Instead of obeying, Jim tumbled down on the couch and put his hands under the back of his head and smiled.
“Dell,” said he, “let’s put our Christmas presents away and keep ’em a while. They’re too nice to use just at present. Our mutual funds are in the toilet, and we’re leveraged to the hilt since I leased that other Saab. So I sold the rights to my two biggest clients to a design firm in Soho in order to get the money to buy your combs. And now, suppose you put dinner on.”
The Magi, as you know, were wise men–wonderfully wise men–who brought gifts to the Babe in the manger. They invented the art of giving Christmas presents. Being wise, their gifts were no doubt wise ones, possibly bearing the privilege of exchange in case of duplication. And here I have lamely related to you the uneventful chronicle of two foolish children in an apartment who most unwisely sacrificed for each other the greatest treasures of their house. But in a last word to the wise of these days, let it be said that of all who give gifts these two were the wisest. Of all who give and receive gifts, such as they are wisest. Everywhere they are wisest. They are the Magi.
Note: I first perverted this classic short story in an ancient blog posting from late 2003, but since only a handful of you were on my list at that point, I figured I’d recycle it for 2013 and update it to reflect the absurd pricing of the new Mac Pro. Before I run out of keystrokes here (this is a zero day, after all), let me wish you and yours the happiest and healthiest of holidays, and I hope to see all of you at some point in 2014.
We’re talking small
Before I get into all the gory details of everything that transpired at the NIH clinical trial last week, I wanted to share my unique lodging experience at the Bolger Hotel & Conference Center, which was originally constructed in the early 1980s as a training facility for U.S. Postal Service employees, and recently taken over by the Dolce Hotels and Resorts group. Given that hotel rooms in the vicinity of the NIH are at a premium in terms of both availability and price, and that the lodging stipend extended to trial participants is a modest $50/night, I felt very fortunate to happen upon this hotel, given that it’s a mere five miles from the NIH yet runs barely a few bucks more than the stipend amount. Plus, it’s located on 83 acres of private forested grounds with a 1.5 mile walking/jogging trail, two fitness centers and a pool, and–most importantly–complimentary wired and wireless Internet access.
So what’s not to like? Well… because it’s more of a conference center than it is a hotel, it was lacking in a lot of the typical amenities common to most hotels. Like employees, and room service, and vending machines, and a place to purchase goods and sundries, and a mini-fridge or microwave in the room; those sorts of things. Perhaps that’s because there was literally no room in the room to accommodate even the smallest of appliances–or anything else for that matter.
I’m certainly not the “road warrior” type who’s stayed in hundreds of hotels as a function of my job, but I have done quite a bit of traveling over the years, and I have to say, I’ve never seen a hotel room as small as this one. It was essentially the size of the bed (a double), with just enough space added on either side to be able to get in and out of it. There was a padded desk chair and a very shallow desk at which to work, but it was virtually impossible to move the chair back far enough to get up without being blocked by the foot of the bed, so I had to crab-walk the chair sideways towards the bathroom in order to escape.
As the extremely polite and professional front desk clerk informed me, since the rooms were originally designed to house hundreds of postal employees for training purposes, the emphasis was on efficiency, not on spaciousness or comfort. Given that I wasn’t there for a vacation, and that everything else about the place was more than satisfactory, I’lll just have to remember to request the room dimensions next time I’m ready to book my hotel for an upcoming clinical trial 😉 Come to think of it, maybe now we have a more definitive explanation for the phenomenon known as “going postal.”
Officially known as the Chronic Graft vs. Host Disease (cGVHD) Natural History Protocol, the trial in which I participated began way back in 2004 and will continue until the investigators have seen approximately 600 cGVHD patients. Only one participant per week takes part in the festivities, so I was feeling very special as all the physicians, investigators and techs were totally focused on me for the entire four-day period. The schedule of tests and consults was extremely tight and allowed very little room for error, much less for eating lunch or returning emails, but everything needs to be completed in that period of time as they don’t want to be dragging participants back there for any do-overs. Besides, in the immortal words of Gordon Gekko: “Lunch? You gotta be kidding. Lunch is for wimps.”
Things started off less than auspiciously before I ever got inside the hospital; the NIH is a Federal facility and as such they are required to (very thoroughly) inspect every vehicle that enters, and of course mine is always filled with boxes and boxes of computer parts and audio cables and hard drives and all manner of tech paraphernalia that would have had to be taken out of the van and individually X-rayed by the security staff ;-( A very helpful member of their team suggested I simply back out, find a space on the street and walk in, which turned out to be my modus operandi for the entire week. Otherwise, my schedule would probably have blown before the trial even got started.
Speaking of the schedule, I was typically looking at, on average, three specialist consults and 2-3 diagnostic tests in the course of a given day. Fortunately everything took place inside the NIH Clinical Center building, which is unabashedly massive, but very well signed in terms of locating specific clinics and testing areas, and although there are 13 floors in the building (or perhaps because of it) the elevators were as fast as my hotel room was small. The Center is the largest hospital in the U.S. devoted entirely to clinical research, and nearly half a million trial participants have come through since it opened in 1953.
One thing that particularly struck me at the outset–and all the way through the gauntlet of tests and consults–was how polite, caring and helpful the specialists, techs and support staff were. Given that the NIH is a government facility, I have to confess that I expected to be confronted, at least in some instances, with the less than optimal attitude and effort all too often exhibited by your typical bureaucrat/government employee. Like, say, a U.S. Postal Service employee trained at a facility in a room the size of, er, a postage stamp… So you can all rest assured that, at least in this, your tax dollars are well served.
Another pleasant surprise was the degree to which the study was constructed to aid each participant with their current cGVHD issues and symptoms. I had assumed that for the most part the techs would be taking blood (26 vials on day #1 and 13 more on day #4) and administering diagnostic tests, and the specialists would be examining and quizzing me, in order to derive as much data from me as they possibly could for purposes of the study. Anything I could glean from the experience for my own benefit would be up to me in terms of taking careful notes and quizzing my tormentors at length whenever time permitted.
Yet in the course of virtually every test and consult, I was provided with all manner of unsolicited and highly personalized advice on the spot. Further, on Friday, Dec. 6th, the specialists with whom I met will assemble as one to “rigorously” review my test results, along with their own individual observations, and will then make specific recommendations to Dr. Strair, my lead physician at the Cancer Institute. I will also be provided with all my records and test results following their meeting, and they will recommend any applicable current clinical trials, as well as whichever studies may come along over the next 5-10 years that could potentially be of value, given my specific set of cGVHD issues.
Dr. Pavletic, the lead investigator, examined me on the first day and indicated that, based on his preliminary look at my history and symptoms, everything looks positive for me to eventually overcome this. His experience is that the average time to complete remission of cGVHD symptoms, to the point where no more steroids are required, is between two and three years from the transplant date. So now I have another target date to beat; since I was sprung from both my hospital stays much sooner than the docs or I expected, I’ll just have to get past this faster too 😉
Overall, I feel incredibly fortunate that I virtually stumbled on this trial while poking around online, and was able to schedule it almost precisely at the one-year mark, which dovetails very nicely in terms of getting a raft of “free” tests that I would have needed to undergo at the Cancer Institute this week. I do still need to receive all my childhood immunizations again starting next week, since the transplant basically wiped clean any immunities conferred on me by virtue of being immunized as a child, or by actually contracting a particular virus like the measles, which in and of itself confers immunity to that specific virus going forward. In short, I am now a tabula rasa–a blank slate–in terms of my disease and immunization history. One could even say I’m now more like a one-year old child than a 51-year old man, at least from an immune system standpoint. Given my experiences over the past couple of years, I can think of a lot worse things to be…
Following are all the tests and consults that were shoehorned into the four days, for those of you who enjoy minutiae or just like reading lists. If you’re not of that ilk, maybe you’ll simply want to belt out a few verses of that classic bloodletting round, “39 Vials Of Blood.” C’mon, you know the words…
39 vials of blood, is that all?
39 vials of blood?
It’s just for the trial
We need six more vials…
39 vials of blood, is that all?
The Diagnostic Tests
- Bone Density Scan (wrist/spine/hip)
- Chest CT
- Pulmonary Function Test
- MRI (upper thighs, bilateral)
- Abdominal Ultrasound
The Specialist Consults
- Pain, Palliative Care And Symptom Management
- Rehabilitation Medicine
- Quality Of Life Assessment
- Social Worker
- Occupational Therapy
- Venous Assessment
- Skin-Punch Biopsies (6mm left arm, 2 stitches; 4mm inside left cheek)
- Full-Body Photography
Yes, it’s that special time of year again, when our thoughts naturally turn to things like vampires, dripping blood, terrified screams in the darkness, the donning of masks and the reanimation of dead tissue. I’m speaking, of course, about the one-year anniversary of my stem cell transplant, which in the most bizarre of coincidences happens to fall precisely on All Hallows’ Eve. Since it’s been a whole year now, I would like to report to you that all’s well that ends well, as they say, and we move on.
The truth is… a bit more complicated than that.
Approximately half of those who receive human stem call transplants (HSCTs)–and that half includes me–are affected to some degree by what the docs call chronic graft vs. host disease, or cGVHD. Put simply, in any transplant situation, even stem cell/bone marrow transplants, the organ that is transplanted is the “graft” and the recipient of said graft is the “host.”
Ideally, the graft (let’s say a donated kidney) and the host get on more or less famously (given that the recipient is maintained on the proper regimen of anti-rejection drugs, of course), and the new kidney lives happily ever after in the abdominal cavity of the host. Occasionally the graft is rejected, which would be a “host vs. graft” situation, and in that event the kidney may need to be removed and it’s back to square one–or kidney #2.
In the case of HSCTs, the host is not just receiving new and hopefully cancer-free stem cells/bone marrow, but because a good chunk of the immune system (every white blood cell in the body, for starters) is created by the new bone marrow, any incompatibility between the transplanted stem cells and the recipient constitutes a “graft vs. host” as opposed to “host vs. graft” situation.
In other words, using someone near and dear to me as an example–namely, me–I’m not rejecting the transplant so much as the transplant is rejecting me. But since the transplant is me now, we can break it down to the point where we can simply say: I’m rejecting me. Now there’s a Hallmark Halloween special for you…
Most HSCT recipients actually experience acute GVHD in the form of a nasty skin rash within a few weeks to a few months after the transplant, and that is not only expected but represents a positive signal that the transpalnt is “working” because it’s attacking what it perceives to be foreign invaders, even though they are just normal ‘host” cells. Typically this acute reaction subsides fairly quickly and the recipient is free to graduate to more pressing matters, such as fighting with their health insurance company and growing back their hair after the chemo regimens.
In the case of chronic GVHD sufferers, the effects linger and can cause all sorts of damage to everything from eyes to liver if left unchecked. A whopping dose of corticosteroids (typically Prednisone) is the weapon of choice against cGVHD, although steroids carry their own side effects (“moonface,” osteoporosis, nasty mood swings, significant weight gain, etc.) so they are not a viable long-term solution.
Then again, they sure beat suffering the cGHVD issues like severely dry eyes, blurred vision, inflamed mouth and throat, major gastrointestinal problems (the specifics of which I’ll graciously spare you), skin rash/tightening/thickening, muscle weakness, chronic pain and a sudden inability to compose brief, succinct email messages.
All of which finally brings us to the reason for this uplifting Halloween greeting. The National Institutes of Health in Bethesda, MD is home to an ongoing cGVHD clinical trial conducted by my new personal hero, Dr. Steven Pavletic, who is on a mission to help chronic GVHD sufferers by first quantifying the issues we face and then assembling that data so that whatever other treatments may be out there, or have yet to be developed, can be assembled and brought to bear against what he insightfully describes as a “man-made” disease.
Now, how exactly will he gather all this data? Folks like me will travel down to the NIH and for four straight days, we’ll submit to being prodded, poked, stuck, scanned, imaged, and questioned relentlessly until we cry “uncle.” Or until Friday at 3:00, whichever comes first.
In return, I get access to all the test results so I can see precisely how much damage has or has not been done to date, my docs at RWJ get a full report on my condition and therefore don’t need to run the standard one year post-transplant tests they would normally conduct on me because they will all be done for “free” at the trial. To say nothing of the fact that I will be afforded the opportunity to quiz some of the leading physicians in their fields as to which GVHD treatments are out there now, which are on the horizon, and which might be most helpful to me in particular. And I’m helping future transplant patients, who will certainly benefit from the information gleaned from all of us.
To give you an idea of the scope of the trial, I’ll be evaluated by an ophthalmologist, a dentist, an immunologist, a physical therapist, a neurologist, a dermatologist, an oncologist, an osteopath, an occupational therapist, and a cardiologist, all leading physicians in their fields and all extremely conversant with GVHD. And that’s just on Wednesday 😉
OK, those consults are actually spread out over four days, but given that I’ve also got quality of life assessments, meetings with Dr. Pavletic and the other investigators, a consult with a pain management specialist, a pulmonary function test and a 2-hour leukapheresis session (blood goes out, blood goes back in), the schedule is pretty grueling…
The excitement starts Tuesday, Nov. 5th at 7 AM at the NIH’s Clinical Center, which–in spite of the best efforts of our esteemed House of Representatives–is once again open for business, with the poking and prodding finally winding down late Friday afternoon. For those of you who may require personalized technical assistance during this time, rest assured that I will be accompanied by a full complement of computers and iDevices and will respond to your inquiries post haste, given that there will be moments throughout the week when I expect to be, shall we say, indisposed.
So, bring it on, as they say, and let the chips fall where they may. If psychotic slasher Michael Myers of “Halloween” movie fame can survive falling from a balcony, being shot and/or stabbed innumerable times, caught in a gas explosion, buried in a mine shaft, beaten with a lead pipe and electrocuted by Busta Rhymes over the course of the original film and no fewer than eight sequels, I figure I can handle a few biopsies and an MRI or two and still escape in the final reel…
The man of the hour, a.k.a. Steven Z. Pavletic, M.D., M.S.:
The trial of the century, a.k.a. “Factors Determining Outcomes in Patients With Graft-Versus-Host Disease”: