The gift of the 1000th day

Post-transplant day #1000. The true gift.

We went out for steak. And then gelato. We dressed nicely and made a date night out of it. We chanced upon another couple in the park and asked them to take our picture, and then we told them our story.

Tonight we celebrated our 1000th day into our second life, our 1000thnew borrowed dawn, our 1000th safe night's sleep.

When I asked my fiancée over the appetizer what she has learned, she thought a minute and then a surprising gush of goals marked and dreams achieved came forth. We talked over what she had wanted before transplant, and what has actually come true. For the most part, everything her heart desired has happened or is about to.

As our discussion got more detailed about what we had dared to hope pre-transplant for our post-transplant life, it seems our goals were more aligned than we previously realized. Both of us dared to hope that we might find somebody to settle down with, perhaps even someone who'd been through what we'd been through. We dared to hope that that person wouldn't see us primarily as a medical case, but first as a person. We dared to hope that we would understand each other's careers, interests, and passions. We dared to hope these things, and so maybe our meeting wasn't as much chance as destiny.

Through succulent steaks and savory sides, we remembered and celebrated. We didn't dwell on the stresses of transplant life or the present stresses of job-hunting or cancer. We toasted our donors and moved on, which somehow seems to be the very point. Move on! We have healed, our donors' families have had time to heal, April and I (and Mac and Mable and Sadie) have come together to form a new family, and we look to our futures with a lot of...well....hope. Eternal hope.

We're not forgetting our friends, of course, those who are struggling to make their 1000 days, or who have already required re-transplant. We certainly don't forget those who didn't make it. They're never far from our minds, as they live in our hearts; and with the very recent deaths of Korinna Conron and Talana Fairfax, we are more determined than ever to keep up the good fight and to carry their memories with us.

April is the match I long awaited and I love her in ways I never imagined. Our love is inextricably bound up in our transplant story. And tonight, over drips of gelato, we reminded ourselves that our story is no longer one just of surviving, but of Living, Laughing, and Loving.

THIS is the true gift -- the Gift of the 1000th Day.

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 

the writing on the wall!

source: http://www.lyricsondemand.com/soundtracks/m/mysteryofedwindroodlyrics/finalethewritingonthewalllyrics.html

Die with your boots on

Post-transplant day #59. What have I lost?

"Um...well, it's kind of funny. When I got my diagnosis – cancer – I said to myself, y'know, 'Why me?' And then the other day when I got the good news, I said the same thing." - Walter White, Breaking Bad S2E10

No, Walt isn't talking about survivor's guilt; he was talking about what gets stripped from you when you are no longer dying.

There's something I've lost in this whole process, a part that's been peeled away from me and left me exposed and raw.  Part of my psychic skin has been removed.  With the replacement of my lungs, I am no longer the man I was, that much is self-evident, but it goes much deeper than a mere change of address for a pair of lungs, deeper than the psychological challenges of recovering.

People often exclaim about my mental strength; normal people who have never had to handle a chronic illness profess that "[we] don't know how you do it!"  Well, the easiest answer is that you don't have a choice.  You do, of course, but the implication is that rolling over and dying is not a choice - so we fight.  And when your fight is daily and lifelong, it becomes not just something you DO, but something you ARE.  You GROW armor, not just put it on.

I've lived my life so long battling the CF monster that my warrior self is a fundamental part of who I am.  Now, through deus ex machina, the hardest part of that fight is alleviated, banished.  The nastiest head cut off the hydra.  Oh, sure, a new head or two is growing back and will represent a new battle - but it is a different one, requiring learning new skills and tactics.  But I used my long experience in handling my pulmonary problem as my armor to handle the ills of the world.  My cough was my weapon.  And now it has been stripped from me.  My hyper-vigilance was my armor. And now it may be overbearing.   To be put into remission, to get new lungs, to have a death sentence put on hold is to be unsure if its appropriate to continue wearing the same armor that got us this far.

This afternoon, with fellow 59-day survivor April Hansen, I saw Dallas Buyers Club, a movie which hits close to home due to its examination of terminal illness and of fighting bureaucracy ....many sentiments expressed in words I've only kept in my heart 'til now.  I was constantly hit by moments that were too similar to my own experience.  The moment when Ron climbs out of his car, forgetting he's connected to an IV, and yanks his PICC line -- I felt that physically.  The desperation for drugs that are either banned by the FDA, or not approved yet, especially rang true, as the combination therapy from Vertex Pharmaceuticals for cystics with Double delta-F508 heads into Phase II trials. 

But what I most liked was watching Ron Woodruff develop a better, more hardened personality.  He becomes an honorable warrior in the face of being forced to fight a monstrous disease (and the system). The things he DOES in order to find alternative treatments and survive become the thing he IS.  He becomes nothing short of a modern samurai.  As Ron would say, I liked his style.

[This is not an attitude all people with a terminal illness cultivate.  If I didn't have proof of that before, I do now in front of me at rehab.  Those of us who have grown up with our disease (CFers) tend to have a far better grasp of the medicine ahead of us and handle medical difficulties easier than those who have had their disease sprung on them (COPD, IPF, etc).]

Now, Ron died with his boots on seven years after his diagnosis.  In the 80's and early 90's, it was inevitable.  But what Ron didn't lose was the integral parts of himself - the shield and the sword.

Today, I was reminded of the best parts of us that chronic and terminal illness builds into us.  The strength to survive is made of simple everyday tasks, nothing special really, but tasks which must be *acted* upon.  Every.  Day. And when the need for those particular refined actions is removed...what's left?  Sure the fight is still there, in a different form; but the armor I am growing now is unfamiliar and doesn't fit the same as before.  I miss my old armor.  But I'll move forward with what I've got now and hope, when the time comes, to die with my boots on.