Thursday, April 28, 2005

What A Long Strange TRiP It's Been...


Nancy and I are looking to start a New Jersey-based support group for transplant recipients and folks awaiting transplant. Our partners in the endeavor are fellow NYU liver transplant patient Michael Goldenberger and his wife Nan. We are thinking of a location between our respective homes in Morris and Mercer counties and are open to all suggestions. Along with personal support, our aim is to promote organ donation.

We've tentatively set a name of TRiP - Transplant Recipients in Partnership - for the group. (The name derives from the long trips we make to see our wonderful doctors and friendly staff at the NYU Transplant Center.)

Anyone interested can contact us at

Saturday, April 23, 2005

Happy Earth Day...Driving My ''Mercedes''

Folks - I've been out driving my 'Mercedes' everyday, pushing my new, reborn body to get in shape, and wearing my liver transplant logo scar proudly. I've been wearing a pedometer that my employer, Dow Jones, gave out last year to those who signed up for a fitness program called ''Walk This Way.'' I kept up with it for several weeks, logging the 6,000 steps goal each day. But when I got hit with my mystery hepatitis in late July, I was grounded. A while later, I got a T-shirt from the program and a certificate commending me for ''making it half way.'' I laughed at the image of me being stranded halfway through my walk and not able to make it back. Now, I'm making it back and turning around and heading out again.

The T-shirt, as it happens was size Large and wouldn't fit at the time even as bologna skin on my XL body. Now, post-transplant, I've shed some 25-30 lbs - better for it and determined to keep it off - and the shirt fits nicely. I noticed, too, for the first time the inspiration saying on the back from the inspirational author, Scott Reed: ''This one step -- choosing a goal and sticking to it -- changes everything.''

I've been out just about every day, logging as much as 7.25 miles (9,000 plus steps) on my walks and seeing my lovely town - an explosion of cherry blossoms and magnolias -- at a pleasant stride.

Many folks have noticed me and cheered me on my walks and that's inspired me to send away for some DONATE LIFE T-shirts to wear to be a living billboard in promoting the cause that gave me my life.

Every day I'm walking this earth is Earth Day to me, whether I get outside or not. These glorious outdoor days have been a thrill - along with usual groundhogs and deer - I've encountered snakes by the riverside and spotting something in a pen that looked like either a fat goat or an oddly colored sheep - I'm betting on the latter.)
I've encountered conclaves of cardinals (more inclusive than the Roman variety, with ladies in their midst) and shared with them my views of the new pope. I sent good wishes to orioles and blue jays in my path for an enjoyable - but not too successful - baseball season. I've found markers along the road to forgotten local heroes who donated park lands, signs that are all but invisible to anyone moving beyond footspeed.

So, what are you doing reading this? Shut off the computer and get outdoors.
Take a walk. Take a hike.
Happy Earth Day to you!

Friday, April 15, 2005

Living Stronger Every Day

Folks - Not much new on the news front, just reporting that I'm feeling stronger - living stronger - every day. Since we're blessed here with a glorious spring I've been out for long walks (about 5 miles) each day - sometimes pushing Tasha in the jog stroller for an extra workout. If Tasha has ballet/tumbling (often one and the same at this age!) or swim lessons at the Y - I tag along with Nancy and do some modest bicep curls and training on an exercise bike.

My transplant docs at NYU have cleared me to do what I like exercise-wise, but I don't want to push things before the hernia man has his say. (Close readers of the blog will recall that days after my liver biopsy - which showed need for transplant - I developed a hernia, first detected by me on my way into an MRI. My concern (''What fresh hell is this?'' as Dorothy Parker would say to a ringing phone) made the 'relax and lie still' command of the MRI operator that much harder, but this thing is nothing more than a nuisance that can now be attended to surgically, since I'm less immuno-suppresed.

I'm anxious to get back on the bike. An old friend - read my blog and my mind the other day - e-mailed a query of whether I - like Lance Armstrong - was cycling again.

Let's get real. The similarity between Lance Armstrong and myself goes no further than the fact that both own bicycles and speak lousy French.
In some ways, though, I can relate to Lance. (And my always gorgeous wife, Nancy Bird, is looking a bit like Sheryl Crow these days.)

Of course, Lance's well-known for having made an incredible comeback from his treatments for testicular cancer and winning the world's greatest cycling event - the Tour de France - six years in a row.
He put his fame to good use and created a foundation for cancer research that has raised tons and tons of money in large part through the sale of $1 yellow rubber bracelets imprinted with the motto: LIVESTRONG.

Even though Lance and I didn't share the same illness, I was inspired by his story, courage and cause. I bought several of the bracelets and gave them out to my family on Thanksgiving - I told them at the time that I was certain I would beat ''this liver thing'' and life would be better than ever.

I thank God, my donor and my donor's family and my doctors each day that this has been the case.
I'm living stronger each day and I am stronger each day.
I proudly wear my LIVESTRONG bracelet all the time. I was surprised when a young African-American couple waiting at the NYU transplant clinic asked me what the meaning of it was. I thought everyone knew by now - but I guess if you're at the transplant clinic you can be excused for being a bit out of touch with some parts of the outside world.

I'm proud to wear a green bracelet next to it (not just because the two together remind me of the colors of the flag of wonderful Brazil). This one bears the words DONATE LIFE and the Spanish translation DONE VIDA. My ''vide'' is far from ''done,'' if you'll excuse the pun, thanks to my donor family. As I've said, I have a strong feeling (but no confirmation) that my donor was of Hispanic heritage, and in her honor, I wear the band with the Spanish words showing.
This wonderful bracelet was one of many gifts from a thoughtful neighbor, Nancy.

(You can get one, too, for just $1 at )

Someone thought the green one represented a sports team and told me there are ones being sold now bearing the names and numbers of Yankees players. That to me is an abomination (not just because I'm a Red Sox fan), but because of the worthy, life and death causes that these bands have come to symbolize.

I chance upon an old 60 Minutes interview with Lance that was being shown on ESPN Classic the other day. In it, he said that not all the changes the cancer brought to his body were bad. Since he lost 15-20 pounds and kept them off while working out to get stronger, he became a more formidable rider and able to tackle the Tour's punishing hills.

I feel the same. I'm holding my weight near 180 pounds now - roughly my weight of 20 years ago. That's down from near 240 lbs three years ago and 20-30 lbs below were I was before I got sick last July. Thankfully, it's also more than 20 pounds greater than my sickly weight just before and after the transplant.

I'm determined to take my new (scarred but slimmer) body and keep it in the best shape I can. I'm determined to keep up the exercise after I'm back to work later this summer- and LIVESTRONGer every day. Who's with me?

Today's thoughts for the day, from our calendar, are worth sharing:

''It is a great thing to do little things well.''
''God comforts us to make us comforters, not comfortable.''
''To ease another's heartache is to forget one's own.''

Thursday, April 07, 2005

Happy Birthday, Nancy

I never thought I would be at a loss for words.
But I feel mute when it comes to expressing just how much you mean to me.
Words can't describe.
Today is just another day to say ''I Love You.'' Everything about you.
There have been times in our life together when I think I can't possibly be happier. And then you happen.
There have been times when I didn't think I could ever feel happy again.
And then you happen.
Everything I try to say just sounds like some overplayed lyrics. I guess that's why cliches become cliches - because they're true.
I love you more today than yesterday. But not as much as tomorrow.
You're in my heart, you're in my soul. You're in my liver, the new and the old - let's not go there.
You're my rock; you're my soul, my angel.
I love how very much you love and I love how very much I love you.
What more can I say?
I love that you were born and I love that we found each other in this life.
I love our life together. And I love you so.
That's for ever and for always.
Happy Birthday, Nancy.

Tuesday, April 05, 2005

Two Great Gifts

Folks -

I felt blessed by two great gifts received Monday in a long visit to the NYU transplant center.

The first gift was wonderful news from a friend; the second, a perfectc checkup of my own.

In the overcrowded waiting room, Nancy and I spotted the daughter of a wonderful man who had shared a space in the Transplant ICU with me for several days. He had just finished his checkup and looked great - perhaps 20 pounds heavier than I'd last seen him before the start of the New Year in the hospital. He always had the bright smile, but it beamed essentially brilliant as we shook each other by the hand and healthy the other looked.

The last time we were together was Dec. 29 - 10 days after my liver transplant and the day before the day I was released from NYU - we took turns riding a semi-recumbent bicycle in a small physical therapy room overlooking the sparkling East River. In our hospital gowns and slippers, gaunt and grateful, we were anxious to get down to the business of recovery - in short - we were Re-Born To Be Wild on our cycles.

Monday, we both burst with enthusiasm about the arrival of spring and the opportunity to get out in the fresh air for our much needed exercise. My friend had a ''double'' - a liver and kidney transplant. In the hospital, his family came every day, always smiling in my direction as they ducked behind the curtain separating our beds.

I'll never forget the first night, as the soft, soothing sounds of his daughter singing to him in their native Creole-French moved me to tears. From that day, we always called out encouragement to the other as therapists ushered us out bed for a stroll around the floor. When a nurse was needed, but unfound in the depth of night, we bucked each other up, as Dylan would say, like ''crickets talking back and forth in rhyme'' the stronger of the two calling out a deep echo of the other's feeble cry for help until someone arrived.

Our unexpected Monday encounter had all the joy I had anticipated from the celebration of transplant recipients, donor families and medical staff which had been planned for last Saturday at St. Patrick's Cathedral, but was cancelled when the Pope turned gravely ill.

My friend's daughter flung her arms around Nancy and I kissed her on the cheek, saying she was obviously doing a great job of keeping an eye on her papa.

Dr. Devon John, whose sometimes blunt, gallows humor helps lighten the mood in the deadly serious business of transplant medicine, was effusive, too, when I remarked to him how happy I was to see my friend looking so well.

Turning to a junior doctor who had just finished a full, basic examination of me, he filled in our background. ''The two of them would sit across the room from each other watching each other die,'' Dr. John remarked, with an air of satisfaction over the fact that we are both alive and thriving.

The first gift - seeing my friend healthy - combined with my own strong report. Reviewing, the report of blood work taken on Saturday, he said, ''your numbers look great! Better than great, they look fabulous!''

My meds, which have been greatly reduced since the surgery, were kept steady, but I was deemed well enough to now be able to face a small operation for an unrelated hernia which appeared in early November during my week-long stay at Beth Israel Hospital. My twice monthly blood work is now required just once a month and I am completely bandage free.

Monday's only black spot came at lunch before we headed to the city. I bit into a cheese sandwich - and thought I found a pearl - odd, indeed - it turned out to be a small part of an upper back tooth (probably worth about 25 cents on the current Tooth Fairy scale). Thankfully, there's no pain.

Now, I've got detailed instructions from my liver folks for my trip to the dentist - advising what type of medications I need to have and can't have - during oral treatment.

So, bottom line, good news is that I'm feeling stronger every day and apparently on target for a July return to work - and with a temporary reprieve from the transplant doctors, free to go see two other doctors - make that three, I need new glasses, too.

And that passes for mighty good, welcome news around here!

Monday, April 04, 2005

Amid Tears From Heaven, Remembering The Pope

Saturday was supposed to be quite a different day than it turned out to be.
April is living up to its reputation, showering us since before dawn and again washing out Alex's baseball practice.

After baseball, we were all planning to head into New York's St. Patrick's Cathedral for a religious celebration bringing together organ donor families, recipients like myself, friends and medical workers. But with the Pope near death late Friday, we learned that the event will be rescheduled.

Instead, we gathered the kids and headed off to a showing of the movie ''Robots,'' which I rate as just OK, as its redeeming message of pursuing dreams and goals manages to fight its way free from an unnecessarily barrage of scatological ''comedy.''

Arriving home, as the tears from Heaven continued to fall, we learned that the Pope had passed just moments earlier. He came up just a month short of seeing his 85th birthday, just as my Mom (who would have been 86 last Thursday) did in passing in February 2004.

Nancy and I felt a special bond with the Pope, having received his blessing in a general audience on a blistering hot September day on our Italian honeymoon (''luna del miele'') in 1991.

We visited Vatican City on a Tuesday and learned that the Pope's weekly appearance before the crowd gathered in St. Peter's Square was set for the following day. We started asking Vatican staff how we could get invited, hoping the fact that we were on our luna del miele would get us in.

My Italian is minimal, (mostly a corruption of my thin Spanish) as witnessed by confusion inflicted on a Roman waiter when my after-dinner coffee never arrived. In ordered in Italian what I thought was a double espresso, but the waiter never brought it, despite his return to our table about four times in the span of 10 minutes. When he inquired ''caffe?'' I dispatched him with what I thought was an order for a double espresso. Turns out I was saying ''dopo,'' meaning ''after'' or ''later,'' instead of ''doppio,'' meaning a double espresso. Guess who felt like a dope-o when we figured that one out.

In Venice, my language skills led to confusion over just what it was that a romantic waiter was offering us to commemorate our honeymoon. Along with two Italy-boot-shaped shot glasses, the waiter set down a bottle marked vodka and something I interpretted to mean ''smells like fish,'' (pesci) but, thankfully, turned out to be peach (pesca) flavored.

The luna del miele connection opened doors beyond our expectations at the Vatican. ''Sposi novelli?'' a priest inquired of us, as we asked about attending the Pope's blessing. I knew enough Italian to know this meant newlyweds and we replied ''si'' with the enthusiasm of lovebirds who could still count the time we'd been married in days.

With a swoop of the hand, we were invited to climb an old broad marble staircase. There wasn't another soul in sight as we wandered up, seemingly heading to the Pope's inner sanctum.

Ahead of us lay a long corridor and we walked softly passed several closed wooden doors, imaging that the Pope would wander out in lounging robes at any moment. As we passed an open door, a priest sitting behind a spartan, paper-free desk, motioned for us to enter, posing the words ''sposi novelli'' as a question. I recall wondering if some hidden network of cameras and communications equipment was secretly tracking our every step despite the outward contrary appearance given by the ancient setting.

From a drawer, the priest produced two printed invitations and two small gifts, both pre-blessed by the Pope. Nancy received a rosary and, in a small vinyl pouch emblazoned with the Vatican crest, was a gold key chain with a disk on the end featuring the raised image of "Pontiflex Max. Joannes Pavlvs II'' in a stage-left profile on one side and Mary holding the Christ child on the reverse.

My Pope-on-a-rope is a treasured annual adornment on our always-ecclectic Christmas trees.

We arrived, according to instruction, by 9 AM - two hours before the start of the ceremony - to take our seats in a designed section perhaps 50 yards from the stage. We were surrounded by busloads of pilgrims from eastern Europe, many waving flags from the Pope's native Poland. Yes, no matter where we sat, we were behind a Pole, but we could still crane to see the stage.

To block the scorching Mediterranean sun, scores of our neighbors crafted paper (pronounce it ''papal'') hats out of newspapers and maps of Rome, or knotted handkerchiefs on their heads, creating an odd, holiday camp atmosphere. Hymns in many languages drifted up from the crowd. Despite the wilting heat, several brides and grooms in full wedding attire promenaded through the square.

Soon the Popemobile swung into action, moving slowly and silently through the pathway of barriers behind which the faithful clambered, praying for a view of the Pontiff or a touch, as his gestures moved from handshakes to waves and broad blessings. We were less than 20 yards away and we moved quickly to take our ''me and the Pope'' photos which show the immaculate, white-clad Pontiff looking like a mininature parrot nearly perched on our shoulders, while our close-up faces were a contortion on satisfied smiles and involuntary, into-the-sun squints.

On stage, the Pope read list after list of welcomes to different groups in many languages, getting a big whoop from our section when he cast his attention and blessings to the sposi novelli.

But it's far from the fact they we ''met'' the Pope that leads to our admiration for the man. I was always impressed by the real world aspects of his biography, running an underground theatre group, working as a laborer in a quarry and as a union organizer, his athleticism and his insistence on continuing to swim and ski as often as his aging body would allow him.

Our former NY chiropractor, a good friend who happens to be Jewish, had the pleasure to treat the Pope for his aches and pains on several occasions. He told us how he and his patient joked about using the now ever-present cane ''as a weapon, not a crutch.''

While respecting the Pope, I didn't agree with him all the time. I believe in the fundamental aspects of the church (Jesus Christ, I've always believed, was the first organ donor), but their practical applications sometimes leave me disappointed. At times, I've been more of a ''Roaming Catholic'' than a Roman Catholic. Having said that, I doubt there are many 85 year olds out there that I would be in full agreement with on all issues. When I heard that someone named Karol was named Pope back in 1978, I hoped that the church was finally giving women the status they deserve.

For me, the most inspiring aspect of the Pope's life, beyond his key role in erosion of the Soviet Union - and the episode I tried to explain to Alex, who turns 7 next month - was his forgiveness of Mehmet Ali Agca, the man who shot him in an assassination attempt in 1981.

In theory, all Catholic men are eligible to be Pope, but about the only thing I have in common with the late Pontiff (apart from being in the same place on Sept 25, 1991) is that we've both had our gall bladders removed.

It's my hope, and bet, that next Pope will come from Africa or Asia - a selection that would show the church's global reach and end Euro-centricism. The world is ready for a non-white Pope and someone to advance the steps of his predecessor - let's hope for a John Paul III - with all the similarities and the differences that implies.

While we've dwelled on the Pope and the way he could truly seem like an old friend to so many, it's been a time for surprise visits from old friends - who are more like brothers.

George, who inspired me to propose on the spot to Nancy nearly 15 years ago, stopped by on Friday with wife Nora and their children, Sam and Sophie. They moved from Maryland to Michigan while I was awaiting my liver transplant, and we thought it would be at least a year before we saw them again. But we had a blessing, not a joke on April Fool's Day as they popped in for a quick visit while driving to see family in NJ.

On Saturday, instead of going to St. Patrick's, we had the pleasure of the company of Patrick - a good friend of nearly 30 years - who invited Alex and I to a basketball game with his son, Kevin. The bonus was that Martin, another brother/friend was a special surprise guest, along with his daughter, Leah.
A winning night, despite a last-second one-point loss by the Nets, who lead through most of the game.

Still, as ever, joys are tinged with sorrow and we mourn the passing of the mother of our neighbor, Matt, who with his wife, Amy, and children Emily and David, have been a great source of support and strength to our family throughout my illness.

We hold them dearly in our prayers, as they have us for these many months.

Today, I'm off to a regular appointment with my NYU transplant doctor, feeling great, but somewhat odd because for the first time in many months I don't have a single bandage on my body. I'm working on getting back my strength, muscle tone and conditioning, which are weakened from the operation, weight loss and medications.

I won't be attempting that last-second jump shot for the Nets anytime soon, or jetting off to the Vatican, but I'm further down the road to full recovery.

Friday, April 01, 2005

Worms Turn April Fool's Joke On Birds

Spring, which popped out blooms in as unlikely a place as Death Valley, has finally arrived here.

Walks with Tasha and Alex have turned up a few crocuses and robins galore.
And where there are birds - there are worms.
We know about the early bird and the worm. This time, the worms turned on the Birds, who were too early.

In his first-grade class, Alex is having his turn as ''Star of the Week.'' On one day he took in his Star Wars light sabre and Robosapien, another day he showed pictures and souvenirs from our trip to London last May on his and Tasha's birthday. On Thursday, I read a book to the class during a brief visit.

Today, we planned to bring in pizza for the class of about 20 - and being April Fool's Day - we had tricks up our sleeves. Alex and his teacher were in on our surprise for days and did a good job of keeping the secret.

With Spring and April Fool's Day on our minds, we thought what would A. Bird like on a pizza? Of course. Worms!

We bought three bags of Gummy Worms and loaded up two of five plain pizzas with the tricky treats. The pizza guy loved the joke. We also got an empty pizza box and opened it first, pretending that we had been the victims of a big April Fool's joke - no pizza!

But the joke was on us - we put the worms on the piping hot pizza too soon and in the 10-minute drive to Alex's school. They melted. Big time.

We were left with a two big sticky red puddles in the middle of two pies. Alex's quick thinking teacher proposed ''Worm Juice Pizza,'' over the obvious suggestion of ''Worm Blood Pizza'' that was staring us in the face.

Always (sort of) prepared, we still had some worms in the bait box, er, bag - enough to decorate one pie and give a worm-covered slice to each kid who wanted one.
After that first slice, though, we couldn't hand out the ''plain'' slices fast enough - only a couple of brave (?) souls tried the ''Worm Juice'' variety - leaving much of it for your's truly. ''Interesting'' taste - think of pizza sprinkled with Kool Aid drink powder.

So the worms turned the trick on us, but the Birds were soon back in charge.

We spurred Alex's teacher to tell the story of the rare Lirpa Loof bird that only appears on April 1. Tasha, in ballet costume from her class at the Y, helped out by showing off her best Lirpa Loof dance and call. The kids asked several questions about wing size, beak size, color, etc. and we told of many varieties.

They each drew colorful pictures and we encouraged them to get their entire family out into the front year and recreate Tasha's ritual in order to attract the rare birds.

It should be right about now when the skeptical parents realize that something about the words ''Lirpa Loof'' on those bird portraits looks strangely familiar.

Enjoy the day!