The Writing on the Wall

Post-transplant, day #428.  The Writing on the Wall.


I have met my maker and returned!
What advice I'm giving
To all those living
Is just to learn what I have learned:
Life is dear! There can be no vict'ry in defeat.
If out-numbered, beat a fast retreat
To the nearest shelter and dig in!
When you live, then you win!

This last week has witnessed my triumphant, albeit low-key, return to the musical theatre lighting desk, with tonight being final dress of Blair Academy's The Mystery of Edwin Drood.  Those who know me know my affinity for good theatre, especially musicals, and that lighting those and dance performances pretty much constitutes my lighting career.

It is the rare straight play that doesn't get boring for me.  But musicals have a way of getting better night after night, production after production, becoming more familiar and worn and treasured each time I see one or hear the cast album.

They also have a way of getting under my skin and causing me to become an emotional wreck.

Case in point:  in the fall of 1997, while my girlfriend was living in Silver Springs and I was in New York, both of us for master's degrees, I visited her for my birthday and she surprised me with tickets to see Rent.  Given ticket prices and lines that stretched around blocks, I never got a chance to see it in NY.  This would be my first viewing of a show I knew almost by heart just from the cast album.

I enjoyed the show immensely, singing along with the cast mostly in my head, sometimes outloud to Kimberly's annoyance.  But then we reached my most favorite song of the show: Seasons of Love.

Now here I must back up to just a few months previous, to before leaving Springfield, to a moment in time when my main sport was climbing.  Towards the end of my last semester, my best friend Dave asked me to his room and then told me with tears running down his cheeks that our mutual friend and world-class climber, Chris, had fallen while free-climbing.  He was dead, his head cracked open like a watermelon on the rocks below.

You may think I was horrified.  You would be right.  But aside from shock and numbness, I couldn't process the loss of my friend at the time.

Yet in the middle of watching Rent in Washington, D.C., Jonathan Larson's lyrics washed over me and allowed a release of my grief like I'd never felt before.  By the middle of the song, I was bawling -- and I couldn't make it stop.  It took several minutes after the cast had moved on with the rest of the show for me to compose myself.  I don't think Kimberly ever understood the impact that a mere song can have on me, especially when it opens the floodgates of grief.

But now, having finished Drood, I have another tune that makes my emotions boil to the top; an anthem that ends the show.  In a deus ex machina ending, Edwin Drood escapes from the crypt his body was deposited in after his "murder" and describes what he learned as terror washed through him and he fought for his very life to get out. in "The Writing On The Wall".

You have no idea the sudden strength
That you feel within you,
The steel and sinew,
When fate stands smiling at arms-length.
The lyrics echo and reinforce how I felt prior to transplant; how the overwhelming majority of us feel I think.  We will do anything to survive.  And how those of us feel who are trying to encourage others to keep their head up and keep marching on in their recovery, no matter how hard and exhausted they are getting.

Scratch and claw for every day you're worth!
Make them drag you screaming 
from life, keep dreaming
You'll live forever here on earth.

I have read the writing on the wall,
And it's clearly spelled out
For those who've held out
That holding on to life is all.

Sometimes, though, someone can't escape from the crypt, can't cheat fate.  But of my fellow CF Warriors, not a single one has simply given up, simply laid down and died.  They fight strenuously with everything they have to the miserable end.  And in the last six months, we've lost a LOT of Warriors. From Kenna Taylor, who was denied transplant, to Jordan Wood, who had survived two double-lung transplants and spread the word about organ donation through his work in the church and elsewhere.  A few days ago, we lost the strongest fighter I've ever known, Eryne Shan.  Even with her dying breaths, she was asserting that she wanted to live.  And, of course, I am still deeply impressed with what one small girl, Ellie Levy, was able to do with her time here on earth and how hard she worked to survive.

Today, I am reminded that life is *always* worth fighting for.  Screw Death.  And I urge everybody approaching transplant who I'm in touch with, from Jen Eisenmann to Janine Ulyette, to gird yourself for the fight of your life; to ready yourself to tackle the worst things imaginable if necessary.  Because I want to see you come through this and you deserve the extra months and years coming.

If you hear my voice, then you're alive.
What a bloody marvel we survive,
When you think of every risk we face

In our mad human race!

I have read the writing on the wall!
Try to live forever
And give up never

The fight - you'll need the wherewithal!
Can't you heed the lightning
As I plead. Inciting you to read 

You make the difference.

Post-transplant day #393. You make the difference.

One life ends, another begins again.

A CF woman named Amy Mars Young passed away today at the age of 50 - a full 20 years beyond her own first end-of-life experience, thanks to organ donation. The lungs she received were able to give her, her friends, and her family 20 more years of love and living. Keep in mind lung transplantation was still in its infancy then - and she lived TWENTY MORE YEARS. That's a generation! What an excellent run!

Another organ donor recently passed away and in so doing saved the life of another Columbia-to-Duke CFer. My transplant friend Joe, whom I met the last time I was at Duke and whose mother Theresa I've been texting with, got his lungs yesterday morning. He's already off the vent and walking. I hope things go as well for him as they did for me.

In the meantime, I continue to pray for Heather James. She's experiencing a protracted recovery, slowed mostly, it seems, by an inability to ween off the vent. It's been two months and she's still in ICU. I just want to yank her out of there and take her on a brisk walk with me.

All these lives - my friends, friends of friends, myself, my love - have all been given new life...by strangers. Without exception, all of my transplant friends have been pulled out of the path of death by the simple gift a stranger made years ago - or yesterday. If you're going to die, you're going to die, as we all eventually must - but it doesn't mean your organs and tissues have to. You can be the autumn leaves that fall, rot, and are permanently gone, but which help push up next spring's blossoms.

Do you know that as I've driven around NY city in my little car for the last eight months, that I haven't seen a single other Donate Life license plate? New York State has one of the lowest rates of donor signups; one of the reasons behind the long transplant waiting lists here. It doesn't have to be that way.

I'm sure all of YOU have signed on the New York state donor registry and let your families know your wishes. But as I enter my second year, I entreat you to pass the stories I have told along to your friends and coworkers; people who may have no intersection with the world of transplant at all, but who, if they just understood the impact becoming a donor has, could make the difference between life and death.

Today I am reminded that as thankful as I am for the lives saved so far, we still have a lot of work to do.

A Short Odyssey

Post-tx day #375. A short Odyssey.

I had planned a 2 week trip.

It all started right, driving down to Raleigh overnight after seeing Sideshow on Broadway, arriving on the 26th at April's, where I caught a few hours sleep, and then together we traveled on to my brother Marc's place for Thanksgiving, which was quite nice. (Marc and Sophia cook up the best turkey I've ever had.) It was a nice couple of nights there, then back to Raleigh. There I took a hard-earned vacation, playing the role of house-husband to April as she finished classes and started finals. I also visited Heather James regularly, as she is still in ICU following her transplant in early November.

But trouble was in the waters. I'd been coughing a lot lately, feeling junky, bringing up the green stuff we CFers know all too well. I was ordered to get labs drawn early, on December 5th. Many values were out of range; some newly so. Also, the people who love me had been gathering their arguments to help me insist to my doctor that I get the P.A. knocked back with orals or IVs...*something*! My cough did NOT sound like what a transplanted person should sound like.

And so, with the help of Calypso -- uh, I mean April, I was deposited at Duke early on the morning of the 10th for my one-year checkup. Labs, PFTs, chest Xray, then consults with Dr Reynolds and Dr Wolfe. A sharp turn of treatments was discussed and scripts sent out, among them a change from tacrolimus to cyclosporin, in an attempt to control my tremors. Of course, neither doctor had yet the benefit of having results from my bronch, which was scheduled later. So some things were guesswork, such as assuming I'm not in rejection (and it turns I'm not anyway). We talked to both doctors about a plan for going on IVs. Reynolds didn't see the need, mostly because he couldn't see my lung infection on xrays nor hear it. Wolfe was more direct and weighed the benefits and risks of more hickmans vs a port at about 50/50. Take note of that. It is about to become very important in this story.

That evening, April's family, Mom and I, my good friends Greg Williams and Alice Neff, Jim Keefer, and Lauren and Mark James came to a celebration dinner for April and myself, it being a year for both of us. Along about desert time, another guest arrived for a moment: Brian Levy, master of the winds.

Earlier, I had heard that he was in town, packing up the last of Ellie's belongings. As that must be a miserable task, I thought maybe he'd like a nice dinner and invited him to join us that night. He said he could drop by only briefly. And so he did. Introductions were made, etc. Before he left, he hugged me and I him...and then we hugged each other a bit tighter.

For me, everything stopped. I don't know how Brian feels about it, but for a moment I wasn't just hugging the grieving father of one of the best transplant friends I'll ever have, but I was hugging Stacey too. And hugging Ellie herself. And hugging Manda Thom and Kenna Taylor and hugging Jenna Rose and Brian K. Johnson and all the other CF friends I've lost all the way back to the first one whose funeral I attended, Richard Shannon. I was hugging their grieving spouses, their children, their parents. I was hugging all those people who mean so much to me, but am otherwise so powerless to comfort. Brian was the outer shell of a matrushka doll of memories and patients and caregivers, containing all within.

Shortly after that, the evening turned on a dime. I began to get sick. And by the time April and I were leaving, I just turned to her and asked "Do we get Anticlea to vote on this, or do we just go directly to the ER?"

I had been explicitly told by Dr Todd, who did my bronch, that if the symptoms of my previous post-bronch illnesses showed up, especially the shaking and chills, I was to go the ER without question. And that began a not-wholly-unexpected hospital admission. At least I didn't have to go to ICU this time. Before I left the ER, my temperature had begun to climb even as I still shook with chills. I'd also lost my ability to void. My blood pressure started to rise and fall unpredictably. All part of the pattern. It's a form of minor sepsis from the biopsies combined with lethargic recovery from anaesthesia.

My first night, on 9300, was miserable. I was introduced to two types of urinary catheters I hadn't seen/felt before. Sleep was almost non-existent. This is how a hospital works. By the time I was moved to 7800 after less than 36 hours on 9300, I'd enjoyed four blown peripherals and the musical stylings of a guitarist named Steve. He actually was quite good and the music was relaxing. All part of the Arts In Health program at Duke.

7800 was better. I spent six days there walking laps, looking at walls, listening to the charming music from the hammer dulcimer player who came to visit, putting me under her spell. Lots of tests, Xrays, and meds. A few visits from endocrinology. But, mostly, thinking about Ellie. Replaying memories so they won't fade. Taking a peek at her memorial picture, which will soon hang on the walls, and starting to come to some peace with her death.

Dr Snyder, whom I like very much, was attending for the weekend and she takes the "what is making my patient sick" mystery very seriously. SHE heard my cough! Plus, a nasal swab turned up MRSA in my sinuses. My IVs were changed to sterner stuff and time in IR was requested. Dr Todd was my attending the rest of the week. Under her watch, I got a port placed on Monday, which was a TRIP. A whole story in itself. She didn't let me go the next day because I was running a mild fever and she was taking no chances, given my previous history. I finally got out Wednesday evening. Thankfully, Mark James, Heather James' father, was able to pick me up and take me back to Raleigh. He was patient and helpful as we had to pick up meds at the specialty pharmacy, and then went on the hunt for a nebulizer. Mark is another one of those people in the CF world whom I think I'll forever be friends with. The whole James family has become next-to-kin.

There is more to the story, details and sub-plots, you know, but I won't dwell on them now. I spent a whole day resting at April's. I was exhausted. Yesterday I packed up, wondering where all this STUFF came from and headed north, where I overnighted -- at April's! This time outside Philadelphia. First time visiting the fam on home ground.

It was an unexpectedly long journey, with the Fates perniciously plucking at the tangled skein of my life... but here are my cats and my awesome tenant, and so many friends...

Tonight I am reminded that home is where the heart is; as long as your heart is not lost in the whirlpool of memory or eaten up by grief. Crawl up the slope of the shore, slay your enemies, claim what's yours, live your dream. Peace.