So...how'd that liver surgery go?

Post-transplant day 1098. Cancer doesn't have me yet.

Six cancers found, six dealt with. 25 staples. 10 days in hospital (I should be leaving tomorrow.) More drugs than I can count. 4 instances of getting walked in on while using the patient's bathroom.

The surgery was good and the cut exactly as described - sternum to belly-button.  I hurt like hell - pretty close to Nissen, a step or two down from transplant.

I'm not over this: not yet. Chemo to follow. April is angry about this. She's angry about all of this. I think she feels that we've paid our dues and shouldn't have to deal with this. Unfortunately, life works differently.

She possesses an emotional range I don't. Someone had to be angry about the flaws inherent in the system, locally and globally, and I don't have the energy for it.

Tonight, I am reminded I am still human and subject to the the multitude of injuries and illnesses like anybody else. Despite wishing it were otherwise.

The fault in MY stars.

Post-transplant day #1073.  The fault in MY stars.

"The fault, dear Brutus, is not in our stars, but in ourselves, that we are underlings" Cassius says in Julius Ceasar.  He is explaining that if there are any obstacles to realigning Rome's leadership to something more equal, the impetus must come from within.  Food for thought. Especially in relation to cancer, where a person may wonder if at some point they had enough control to avert this.

These last six months.  It isn't that I have nothing to say, it's that I'm not sure how to say it.  How to fashion the murder of crows that passes for thoughts in my brain these days into something rather more beautiful and coordinated.  As John Greene put it, "my thoughts are stars I can't fathom into constellations"; a saying I find very apropos these days.

I have not written much about my cancer as these last seven months have passed.  I start to write, then stop, and it suddenly feels very, very meaningless. I'm a newcomer to this corner of medicine and anything I may have to say has been said a thousand times by a thousand other voices more thoughtful than mine.  And what could I say, but over and over "I'm tired, I'm tired, I'm really very tired."  Even the most patient of caregivers would get tired of that refrain.

And yet, if you want a concrete detail, that is how my cancer stands in my mind: constant weariness, regular exhaustion, severe anemia.  There are also bowel irregularities as my body takes its sweet fucking time adjusting to the new plumbing.  It can ruin my day - I'll leave it at that.

Cancer forces profound realizations upon its victims and their families, in ways similar to transplant. That the cure is sometimes worse than the disease, for instance.  Individual rounds of chemo could be planned for and dealt with and seem somewhat easy, but the long course of it ground me down, exhaustion settling into my bones in a way that felt irreversible (though right now, a month out from my last dose, I'm feeling much better!)

The immediate fatigue 5FU caused me ranged from mild to severe, but it always meant the next week would be a bad week.  April and I began to plan around these weeks and April didn't push me to get much more done than work, eat, take meds, and sleep.  The surgery hurt, the chemo wore me down, but the worst effect, I think, is what this has done to April.

April is the one who has most directly borne the reality of my cancer, outside myself.  She watched me sleep through leaden weekends, took me to the hospital, sat with me throughout.  She double-checked everything the doctors and nurses said against her medical experience and did her own research on colorectal cancer.  And if she was short with me now and then, it just shows she's human.  Her frustrations boil over and I think one of those frustrations is my refusal to panic over the cancer or its treatment.

Now that...THAT is a subject for a whole post of its own: Stoicism as a primary coping strategy.  Not doctor approved, I'm sure.

I got through it.  That's all.  I did not shine, I did nothing exceptional.  I kept my nose to the grindstone at work and limited my extracurricular activities.  I tried not to bitch and complain, even as chemo brain set in and I found myself with a spotty memory.  Very spotty.  On top of the exhaustion and bowel troubles. The memory loss bothered me more than anything, because it means that my cancer has managed (via its own treatment) to get to my brain.  When you find yourself forgetting, you wonder WHAT you forgot, and when.  You wonder how much of yourself might be slipping away, without knowing it.  Blissful...and terrifying.

Now let's face the future:  Last week I had PET and MRI scans.  And Tuesday, my oncologist sat me down and let me know that the spot the PET scan had found had been confirmed by MRI. I have liver cancer.

Once again, I head into unknown territory.  My immediate future involves getting cut open from sternum to belly button, to be able to get at that spot and cut it out.  There will be significantly longer initial recovery than with my sigmoidectomy, the doctors tell me.  (Of course, I hope to prove them wrong.)  And after that, more chemo.  This time oxalyplaten will be added to the treatment, alongside 5FU.  April is understandably upset and has expressed that she's afraid chemo will tip my kidneys into outright failure.  I talked to the liver surgical oncologist today about that issue and he noted that they've had plenty of patients in kidney failure and they will carefully set doses and timing so as to be as easy on my kidneys as possible.

And that...is that.  It's all I know right now.  Tonight I'm reminded that the fault is NOT in our stars, but in ourselves. If I wish to conquer, then I must BE a conquerer. I must work hard at this next phase, particularly recovery, and not allow chemo to control my life so much.  Though...really.... I don't give much chance of that.

Okay?

Okay.

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.

Right seeing.

August 28th, 2016.  Post-transplant day #992. Right seeing.

I sat and watched these birds wheeling in this crazy pattern against an azure sky for almost an hour, until they finally settled to the rooftops. Every time they came around and hit just the right angle, the sun lit them up like fireworks, full of silver, black and gold. I had no idea pigeons could be so colorful.

I've often appreciated the natural beauty nature affords in smaller scales than the well-known glories of Jackson Hole, the Tetons, the Grand Canyon, Niagara Falls; but following transplant, I'm very attuned to even the smallest details. Moments like this are very American Beauty, I grant; and perhaps seeing that film, with all of Ricky Fitts' poetic captures of singular moments on tape, is what started me on the path of looking at the beauty even in the simplest, most accidental things. And I came to realize there's beauty in so many forms, far beyond the conventional definitions.

What I mostly learned is that there is beauty even in death and decay. Some of my favorite photos are of macros of chipped and peeling paint, rust patterns, abandoned theatres and gyms and subway stations; and not just marveling at beauty in ruins, but the beauty OF the ruin. The patterns of water damage and dry rot, the way linoleum eventually succumbs to time. How metal rusts from the outside in, but its the rusty insides that crumble first, leaving a fragile shell of faintly adhered iron oxides.

Death isn't always the ugly business we think of it. It can be a peaceful, right, beautiful process when the soul is ready, the timing right, and the care-taking compassionate. Several of my design school colleagues have passed away from cancer already. The first one...she was able to be taken home, where she died in peace surrounded by family and friends - and a bright light to the end. That is rightness of action and grace of circumstance. That's beauty.

John Burroughs wrote, "How beautifully leaves grow old. How full of light and color are their last days." This truth of this sustained me in the final movement of my life, before transplant provided the coda that lets me waltz on. It allowed me to remind myself that I was still a man with a vibrant nature, with passions for light and darkness, for design and photography, for creation and destruction.

As I watched these birds, all of these thoughts passed through my mind because these birds defied a basic principle of life: that there is only growth and stagnation, blossoming and decay. There is no such thing as stasis! And yet...this beautiful flock of little dinosaurs was in a HOLDING PATTERN. For an hour, as they flew, time didn't move; or it circled around and around. And I sat watching, on a quiet Sunday, with my stressors and reliefs in perfect balance, allowing me to see again not just with my eyes, but with my heart.

It doesn't take a near-death experience to learn to see this way, to stand transfixed by the unique color of the setting sun on the Brooklyn Bridge, or by the modern art the sun makes out of the (normally ugly) Manhattan buildings, as it reduces all the nuances of the buildings to singular colors - a bright, and a shadow. All lines and contrast. Or by the lichen that grows bright green and delightfully fuzzy in neat rectangles between the slats of a subway grate. Or by a flock of birds wheeling in a sky such a shade of blue that it could drive a man insane if he drank too much of it.

But it may take this tenuous span of time after that close brush with death to more fully and more fully and more fully be able to satisfy my need to experience these moments of pure beauty, tuning my senses to acknowledge the macro, but appreciate the micro.

I don't want to lose this. Whatever happens from this point forth, there are, as always, no guarantees. But I want to guarantee to myself that I won't stop seeing these things, stopping and taking the moment to let it soak in.

Today, I was reminded by a simple flock of pigeons of the hidden pleasures around me; that I should stop and look with my heart even more often than I already do. The concerns of work, politics, finances, and relationships are all, ultimately, temporary. But these fleeting moments - the wheeling flock, the autumn leaves, the setting sun - are enduring in their own right; always there to be seen, if only I look.  

Destination Unknown

Post-transplant day 865.  --Destination unknown.--

For the first time in my life, I have no idea where I’m going.

Duke Admissions February-March 2016.  February 18th thru 23rd for 1) high creatinine detected by both UNC [4.7] and Duke [4.9] on the 16th and 17th, respectively; 2) high blood pressure, noted on admission; 3) blood in stool.  Late night admission; immediately given IV fluids.  Creatinine drops over a few days until 2.5 at discharge.  Consults, medicine changes throughout stay.  Attempts to control blood pressure w/ medication changes complicated by changes to meds prompted by advanced kidney damage.  Finally settle on DCing metoprolol, re-starting amlodipine at half strength, and added carvedilol and hydralazine 3x day.  Fosamax DC.  Calcium cut to half. 

  -- from my notes

Throughout my life, I’ve been able to hazily foresee my future, or possible futures.  I could tell where I was going to go to college, where to grad school, what occupations I’d make a life of.  I could predict the course of my disease to a great degree up to and including transplant.  A life of a transplant has its own divergences, beyond the infections, sinusitis, lung collapses, hemoptysis, liver disease, kidney disease, pancreatic insufficiency, malabsorption, and diabetes I’m already familiar with.  New maps have had to be called up - new skills learned, new possibilities considered.  Many are mentioned, but the big one we all mentally prep for is rejection.  As yet, I have no experience with that.  I have, however, experienced multiple lung infections, a marked increase in my kidney disease, and the onset of hypertension and anemia.  Still - I can handle these.  They were on my map as possible parts of the journey.

What has taken me by surprise, though, is a diagnosis of cancer.

Felt pretty wiped out upon discharge.  Still having bloody stool and headache.  But blood pressure and creatinine under control.  Spent February 24 at April’s.  We talked and decided that the bloody stool hadn’t been addressed with seriousness - plus it was getting worse.  Back to ER in the morning of 25th.  Spent all day there; started Miralax prep 8pm finished by midnight.  Moved to 9327.  Colonoscopy the afternoon of the 26th.  Preliminary results back by 6pm.  

A 5 cm mass has been found in my rectum.  Biopsies were taken and will be studied…soon.  April spent the night with me - tearful, angry, frustrated with me (partly) and the system (mostly).  She’s smart as a whip but she doesn’t know how to redirect her emotions well.  Probably best night I’ve ever slept with her, though, even on that twin-sized hospital mattress.

I just have very few reference points to help me navigate this.  I am depending more on the doctors now than at any time before, as my close friends and family also have little experience with cancer or modern treatments for it.  To keep up with the journey metaphor, the atmosphere has become rather hazy, yet I have no choice but to keep moving forward - blindly.  Even the doctors have been very careful as they move forward.

Spoke to Dr. Thacker, surgical oncologist.  She said biopsy and CT results in full are still pending, but the first look at the CT gives enough information that they need MORE information before proceeding with treatment.  She says the mass is “rectosigmoid”, meaning it appears to be right at the junction of the sigmoid colon and the rectum.  Her diagram on the whiteboard was very simple and very dismaying.  This means more testing - probing really - is necessary to determine exact location, etc.  Because if the tumor is located beyond 15 cm in, we go directly to surgery.  If it is located before 15cm, and encroaches on rectal tissue, then oral chemo and radiation.  The oral chemo is designed to make the tumor susceptible to radiation, which is to shrink the tumor.  And THEN surgery.

The surgery went well.  I have a few new scars for it and some lingering problems with bowel movements that I won’t go into here.  Trust me, you don’t want anybody cutting parts of your colon out.  

Fortunately, I’m not alone.  I have April and my family.  I have excellent doctors.  I have my belief I can overcome anything.  And cancer is a very different beast than lung disease or transplant status. Different enough that everybody knows what cancer is, the seriousness of it, and entire hospitals are built to fight it. 

If there’s one observation I can make so far, it’s that while “I need a transplant” or “I’m immunosuppressed” draws a blank with some people or elicits a confused reaction, “I have cancer” immediately meets with sympathy and understanding.  EVERYBODY has dealt with cancer, if not in themselves then in a close relative.  So I’m not surprised I’m getting good support from FB.  

But what does surprise me is the change in how I’m treated by medical professionals.  Until last Friday, I had the impression my “little” problems - hypertension and kidney disease - were boring, run-of-the-mill, and slightly annoying for the medical professionals taking care of me.  But a diagnosis of cancer? That changes things.  Tanya the PA on 7800, for instance, did a 180 from stony-faced, hella-competent professional, to compassionate, hella-competent, personable medical ally.  She told me a bit about her sister’s permanent colostomy and her own fight against breast cancer and mothers who are more of a complication than a help (in these situations).  We had a couple long, good conversations before my last discharge.  I hope I can count on her this weekend to help keep all teams coordinated.  I’m not going to have the humour or patience to deal with people who won’t listen to me or to each other.

Cancer has already changed me permanently - physically, chemically, mentally, socially. Cancer is a veneer that changes how people see you.  And, I suspect, changes it just as permanently.  I know I view my acquaintances who have survived cancer with more awe than I did before, like Susan Hilferty.  So now I’ll be “that” guy - all over again.  If it's pity, my friends can save it.  I only need their understanding that I have a new normal, even farther from center than before. 

This post has been extremely difficult to write.  I’ve been mulling over what I wanted to say for over two months.  But tomorrow begins a new phase of treatment - chemotherapy - and I felt I needed to get down on paper what has been stewing in my brain so far.  I realize that I have dodged bullets at every turn.  The tumor was located just far enough in to treat primarily with surgery, immediately.  Chemo is up to bat as cleanup; primarily because the tumor was Stage III, I had a small amount of metastasis, and I am, after all, immunosuppressed.  Things could have been a whole lot worse and for that I am thankful. 

 Things may still go sideways, but for now, I’m OK. What I keep coming back to is my ability to cope.  These last two months, I have repeatedly reminded MYSELF that I’ll handle this thing like I always have: calmly, with deliberation, and with dignity.  

Survivors and Heroes

Post-transplant day #685. Survivors and heroes.

There are just some days where I am absolutely humbled. Times when the face of true grace is revealed to me, when something divine is on display and if I pay attention, I'll learn something about what it means to be human. It happens in the people around me, when some occasion strips away the patinaed armour of life that usually hides people's true selves and I can see underneath -- and meet and come to know -- those individuals for whom "every man for himself" is an antithetical notion. This was one of those days.

LiveOnNY threw a luncheon to honor donor families; and they made sure there was a recipient at each table to represent our ranks, say thank you, and honor their nobility.  (And nobility IS the word - for they did the right thing at the hardest of times.  When your world is crumbling around you, saying “yes” can be monumentally difficult.)  And so I attended that luncheon, meeting many donor families, and in particular the five families that sat at my table.  

This was not a black tie affair, but a suit was appropriate; and it was held in one of the ballrooms of the New York Marriott Marquis Hotel in Times Square.  Many of these families traveled quite a distance to be here.  All of them were somewhat subdued and, I think, a little shocked at seeing so many other donor families, as well as getting to talk with so many representative recipients.  I can’t blame them - they had lived through a difficult, extremely stressful time of their lives during which each made the decision essentially in isolation to donate their loved ones’ organs.  Being approached in the hospital, during the final hours of a family members’ existence (once they’ve already been declared brain dead, that is) is a horrible time to have to make a decision that could potentially affect several other people’s lives - and yet that’s exactly what must happen, especially if that decision hasn’t been made and discussed long before any need for it.

One of the more interesting series of speeches of the afternoon was from two donor parents, Frank and Kelliie Cutinella.  You may remember their son Tom died after a fatal hit in football one year ago.  They were gracious and intelligent people.  And while we mourn the loss of a bright young life like Thomas’, we can all celebrate the lives saved by his organs - because this lives were standing on stage with them!  Three of the recipients were there, including a heart transplant, kidney transplant, and kidney/pancrease transplant (which is fairly rare).  I can not imagine a more graphic way of describing the direct benefit of the slogan “live life, then give life.”

The heart recipient, a vibrant young woman named Karen A. Hill, received Tom’s heart on October 23rd last year.  She made a great point about the relationship between the clouds and the silver linings of this existence.  "A world without disease and hardships would be a world without survivors and heroes.”  I hadn’t thought of it quite like that before.  

Also speaking this afternoon was an acquaintance I’d met shortly before I left Durham - Rosemary Hargaden.  It was as if she was my a mimic of my own inner thoughts, taking the prayers and dreams and gratefulness I feel from the world of the ethereal and making them concrete with words of thanks and illustrating what it means to be living again.  Personally pleasing to me was this sudden reunion with another NY-to-Duke CF double-lung recipient. There’s a small but steadily growing club of us.  A third one was there, too, though her name is slipping my mind right now.  But when I think of them, myself, Denise, Piper, Michael, and Jason, and the one orthodox guy who didn’t survive - I am so incredibly amazed with the graciousness of the New York doctors who may have lost our business, but did the right thing by referring us to Duke.

The afternoon ended with a medal presentation - each donor family received a gift box with medallions of appreciation.  My various families collectively lost two sons, two husbands, and a sister.  With a single exception, they all died of brain aneurisms, which makes me wonder if that’s the most common cause of death leading to organ transplant.  The one exception was one father’s son, one of twins, who at 17 was shot in the head.  This father seemed like he didn’t want to be there very much, but his sister (the boy’s aunt) very much did.  So I guess what helps one person grieve just makes it worse for another person.

I’d have liked to have a transplant doctor or surgeon speak - they’ve seen the vast amount of good transplant can do and rarely get to speak to or thank the donor families themselves!  They could also help deliver a message that needs to be stressed:  that though the hardest part is over, the journey as a donor family never ends.  You will always be an example of what it means to Do The Right Thing, true altruism in an age of true selfishness, and one of the best ways to honor your loved one is to push others to become registered donors, too.  For beating back the darkness is the task of all of us involved, flipping the story to the point where organs outnumber the need is the Olympus we must climb, yet can’t climb it individually.  It must be a team effort - donor families, recipients, doctors, and volunteers, all roped together.    

But perhaps this soapbox is best saved for another day.  I really just wanted to write to say thank you to the donor families - those who attended today and those who didn’t.  The families here in New York and the families in The Triangle, and the families all over the world.  

Today I was reminded that life goes on even after our passing, a life where our loved ones bravely soldier on, advocate for the next ones down the line, and almost without meaning to become survivors and heroes.

Dis-Belief

Post-transplant day #666.  Dis-Belief.

"I don't believe in organ donation."

I heard that from the rotund, grey-haired, well-dressed man in front me.  As a volunteer yesterday for LiveOnNY's state-wide Registration Day, I was helping man a table in the lobby of NYU Lutheran.  This man had come down with a companion who was at the moment engaged by another volunteer.  And while the woman was warming up to signing a donor registry card, the man was hanging back.  I caught his eye and asked him if he was a registered donor, or would like to register today perhaps?  And then that sentence dropped out of his mouth:  "I don't believe in organ donation."

Mentally, my jaw hit the floor.  I wanted to respond "Well, organ donation believes in you! It might save your life some day, asshole!"  But that kind of comeback doesn't help anything.  I pursued the issue a little bit, introducing myself as a recipient, noting the fact we wouldn't even be talking if it weren't for an unknown soul generously saying YES to this very request.  Well...I just couldn't get through to him.  Even his companion began to razz him a bit, but he stubbornly kept his distance and his silence.

Now, this man was not a patient.  He was not a janitor or security guard or an administrator or technician.  He was a doctor.  And he "doesn't believe in organ donation".

The only higher amount of disbelief I encountered yesterday was my own, when I heard him drop that little bomb.  All of us at the volunteer table were having a hard time not showing our reactions; incredulous to the last volunteer.  We've all done events before.  We've all been told "no" before, and in no uncertain terms.  Often quite bluntly.  But we can mentally write it off as a consequence of misinformation, fear, superstition, religious constraints, or cultural influence.

When confronted with a person who flat-out says "no", we're trained to follow up by asking what "concerns them" about organ donation, just to satisfy our curiosity, and maybe we could answer some questions they might have.  It is all very polite and positive.  But it is amazing how many people, even highly educated people, even medical professionals -- YES, EVEN DOCTORS -- hold misconceptions or irrational fears.  Often we can at least get our information leaflet into their hands and get them to expose their minds to the idea of it... but not this time.... not this time.

I quite disbelieved I'd heard him correctly at first.  Later, I couldn't quite believe our team had had that interaction at all. Was it a test? Was the man an actor and we volunteers were being throw a curve ball as some kind of in-the-field training?  I'd been through RA training in college and the simulations of serious college student problems we were trained with then felt much like what was happening at that moment!  Flabbergasted is a good word here.  And I felt betrayed.  The physicians are supposed to be on OUR side!  Not on the side of whatever phantasms and ignorance makes a person refuse to become an organ donor.

Earlier, we'd had a Reverend come through and he didn't seem to want to sign up, either.  His reservations may have been based in religion, I'm not quite sure.  Was his belief stopping him?  Had he simply not searched that part of his heart?  I could see a struggle between emotion and logic in his face as he took the info and promised to come back.  (We got a lot of that, actually, and really don't expect people will come back later.  After all, we all know the tactics for disengaging from an uncomfortable conversation, yes?)

But... just before we packed up to move to a different venue, the Reverend came back.  And he had filled out and signed the form!  I got the sense this was a breakthrough moment for him.  Yesterday, we actually changed someone's mind about organ donation; dissuaded him from whatever belief held him back.  We walked away from the day with 39 new registrants, contributing to over 1000 new registrants gathered that day by LiveOnNY, but that was maybe the most meaningful one.  Thus, the day was redeemed by one of our last sign-ups.

Yesterday was important in another way, too.  On October 6th, 2014, I used a bus analogy to talk about who does or doesn't get a transplant and the maddeningly arbitrary nature of it all.  As it happens, I showed the post to a fellow volunteer, Samantha, whose sister had unfortunately become a donor a year ago.  Her sister saved four people's lives because she was registered as an organ donor.  (But not even Samantha's story could sway some people, dammit.)

Anyway, I noted in that post that Kenna Taylor was denied transplant and was that day in ICU.  One year ago yesterday.  And then, one year ago today, I recorded in a Facebook post that Kenna had passed away.  (You've been gone a year, Kenna, and I think of you often.  You had a hell of a spirit.)  I also noted that Eryne Shan had received her transplant, so the day was mixed and bittersweet.  I was so thankful Eryne was finally on her way to health.  I didn't know yet - and nobody could have predicted - the complications that would beset her and eventually kill her.  I miss both of these ladies' presence in the CF internet world.  And I just can't believe it's been a year already.

Why do I volunteer for LiveOnNY, especially when it means a lost day's worth of income? Because I must. For all those who have been turned down for transplant because the one common thread in all the Gordian Knots of transplant is that there simply aren't enough donors! I must get out there, man the tables, speak to strangers, shake hands sometimes (and then sanitize), and repeat our stories over and over because... well because my animal mind tells me if there had been just one more donor registered and one more set of lungs used instead of thrown away, maybe Kenna would have been accepted into transplant and lived.

It would actually take a tripling or quadrupling of available organs for transplant centers to cease picking and choosing, but you can't tell your Id that.  The Ego knows the science, the Id doesn't believe in numbers and statistics.  It goes by the heart.  Unfortunately, it is my Id versus Mr Doesn't-Believe's id.  It is my Ego versus my Id. It is my Belief versus my Dis-Belief.

Today, I am reminded that I can't bring back Kenna Taylor or Kyle O'Neil.  As I told a reporter yesterday, 39 new registrants may seem like a drop in the bucket -- but a drop is measurable and each one increases the volume in the bucket.  And I believe if I get enough people signed up over the course of my remaining life, maybe I'll be directly instrumental in saving one more person's life who would otherwise die waiting.  Even just one more!

Forward

Post-transplant day 611.  Forward.

I made a new friend last week at my local gas-station.  Now I know most stories that begin like that don’t usually end well — usually with waking up in a bathtub filled with ice in a dingy hotel and a freshly MIA kidney — but this one is only in its first chapter.  I kinda hope the story ends up being dull, routine, and anticlimactic, for my friend’s sake. 

So before I elaborate further…let me back up a bit to where my thoughts have been since getting back to 100%.

My rank and status in the field of combat may have changed, but the battle rages on.  Today, at 20 months out, I am in some ways healthier than I’ve been in my entire life, but in others have a lot of catching up to do to 33-year-old me, the one that ran the Flying Pig.  I can keep weight on and good lung function (“lungction”?) up, but I struggle to get my legs under me.  Such is the nature of getting older I guess.

But in this suspect maturity, and in moving on from the biggest crisis of my life, I find myself wanting to make my life count for something more than average.  And volunteerism is the way to do it; at least for now, for when I don’t have time to go on multi-week epic adventures. I’ve gone through volunteer training with Live On NY, lower-NY-state’s organ procurement organization.  These entities, the OPO’s, are the official state-by-state registries and organ clearinghouses brought into being along with the federal oversight board, OPTN (Organ Procurement and Transplant Network) via the National Organ Transplant Act in 1984.  I am officially part of the enormous machine of people, laws, history, cause, and effect that saved my life a mere 611 days ago. 

April and I have already been out manning a table at an event.  We didn’t get many people to sign up, but we were working with an historically difficult demographic to get signed up and I think there were a few we reached who now will more readily sign up when approached again.  My next gig will probably be a four-hour shift at the DMV.  Better find my #1400 t-shirt!

But this kind of volunteerism is somewhat impersonal.  Though April and I can readily help strangers put a face and a name to organ donation by telling our stories, we nevertheless remain strangers.  But there are people out there who are not such strangers — and we must stick together.  I would like to tell you about two people I know whom I’ve been talking with; people who need new lungs and whom I might be able to help.  Owing to general traditions of medical privacy, I won’t use their real names until and unless they give me permission.  They’ll know who they are when they read this. :)

The first is a friend of mine since we met years ago at a fundraiser she used to throw annually for the Cystic Fibrosis Foundation.  She was a powerhouse then.  Today, she is looking a bit deflated and is very sick.  She is in the process of getting listed at NY Presbyterian for a double-lung transplant (of course).  Earlier this year, when we began talking on Facebook and then over the phone about her status, it dawned on me that she doesn’t have the kind of support I had, and knowing what I do about NYP’s requirements, if she has any hope of getting listed, she needs Support.  At least two, maybe three people who will commit to staying in New York once she’s listed and waiting and to providing care before, during, and after transplant.  I’ve seen for myself how draining this role can be, having watched dozens of mothers, fathers, wives, husbands, and children shepherd their loved ones through transplant. 

When we came to that point in our conversation…parents? sister?  boyfriend? all unsuitable support for various reasons…. well, it took me less than a heartbeat to offer my full and unconditional support.  I’ll do everything.  I don’t want to see her turned down just because she doesn’t have stabile enough Support - how absurd would that be?  And yet…I’ve seen it happen.  And so, it’s my turn to cook, clean, chauffer, change dressings and IVs - whatever’s clever, man.

And to be completely honest, I do this knowing that I put myself at some risk.  She does have CF, after all.  But we both wear masks and use hand sanitizer liberally, etc.  She has another support person, but that lovely woman lives near the hospital, not out here in Brooklyn.  So she works on getting accepted, and we all will work on laying plans and contingency plans.  In the meantime, she knows she can call on me anytime, 24/7, for anything.  I’ve walked far more than a mile in her shoes; I don’t want her to experience any more hardship than necessary.


We've already been to her first meet-and-greet with her assigned transplant pulmonologist.  It was a long and informative day, to say the least.

The other woman is my new gas-station friend.  I know, I know…just…bear with me.  So I turned around from getting my change after purchasing some Gatorade and I see a woman waiting for the ATM with her kid.  She’s on oxygen.  I can’t resist striking up a conversation in the most awkward way possible.  I sidle towards her and she asks if I’m waiting for the ATM and “No, I’m waiting to talk to you, actually” just dropped out of my yapper.  So as I’m mentally patting myself on the back for my suave and subtle introduction, something clicked for her faster than for me and she asked if that was my car parked outside.  She said she’d noticed the Donate Life plates before, since she lives in the area (quite close as it turns out) and was I the person with the lung transplant?  At the same time, I was asking her, “is that LIQUID oxygen you’ve got there??” (Unbelievably, because the companies won’t take new liquid O2 orders - only for existing customers.) Yeah, we had a few things to talk about.  She’s been on O2 for five years - and may have another five years before she finally, really needs her transplant.  Despite that, she is in the program at NYP, attends the meetings, etc.  She talked about the difficulty of always having someone attend with her - and of course I gave her my card and said she could call on my anytime.  I’d be happy to help her fulfill her requirements.  As with friend #1, I am more than happy to lay out time and energy for friend #2.  People did for me, after all.

We chatted a LONG time.  I think the bodega owner was getting sick of us.  But eventually I had to get on with my day.  I hope we have a chance to chat again soon.

So is this a “Pay it forward” thing?  Or just paying it back?  I don’t know.  I hope that my efforts bring honor to my donor’s spirit and maybe a little peace to his family; that the coffers of human kindness that have sustained me and the cocoons of love that have protected me are refilled, repaired, and ready to restore another soul. 

Today, at 20 months, I am reminded that while I can never fulfill my debt to my donor, I CAN fulfill my obligations to my fellow humans - *explicitly because* my donor made it so. 

100%

Post-transplant day #500.  100%

I had a great checkup yesterday, 499 days after my transplant.  Several tests and several doctor consults.  The upshot is that I haven't been this healthy in many years.  My PFTs, the OFFICIAL ones, not the ones off my SpiroPD, have significantly improved: I'm at 96% FEV1 and 96% FVC.  I am so close to 100% on the numbers that it doesn't even matter.  Functionally, I'm there.  100% operational. Green lights across the board. Sure, it could all come crashing down around my ears in a week, a month, a year; it's a constant, but managed, risk. That's transplant life.

On the day-to-day level, 100% means I can work efficiently throughout the day, moving from one task to another, without the huge amounts of rest I used to require between every task, even mental ones.  It means I have energy enough at the end of the day to go to the climbing gym for an hour or go jogging for 30 minutes.  It means I have enough energy and strength to break in my new motorcycle with a 1500 mile trip.  It means that while I'm in the Triangle dealing with medical stuff, I still have the time and energy to give my girlfriend her due attention, go out and catch up with friends, take my Mom to an appointment, work on a refinance, and start a light plot for the next play I'm lighting.  All while living out of a T-bag.

What 100% means is that I can once again juggle all that I need to.  It's delicious.  I hope it lasts.

#500 has turned out to be memorable and special without forcing it, beginning with a long ride up to Winston-Salem last night (with April​ and Karen​ leading in April's car) to meet my friends Greg Williams​ and Alice Neff​.  We ate at Bib's BBQ - an adventure in itself - and talked over old transplant topics and where to go from here.  As a founding member of the LRLR, this year's ride is the next Big Thing on my list.

This morning started with phone calls and texts at 8 in the morning and hasn't let up.  But I got to start things off right with a nice breakfast at one of my favorite breakfast places, Another Broken Egg, with sweetie and my friends Pete​ and Jen Eisenmann​.  They have just finished moving to this area in advance of Jen's inevitable final decline and lung transplant.  It gives her time to focus on her health (she's already back to using oxygen part time instead of full time), get to know the various CF and transplant programs in the area, and make a new home in a very hospital part of the country.  I've broken bread with Jen before, but this was my first time meeting Pete, who has been an avid supporter of my athletic efforts over the years.  Lots of coffee and lots of laughter.  Quite the morning!

A couple hours later and I was opening the door to a mortgage closer, a notary public who makes sure everything gets signed.  I think I wrote the long form of my name a couple hundred times.  But it is done.  I am refinanced at a lower rate and saving hundreds on each month's payment.  It takes being at 100% to even start a refinance, much less hang on through one.

To cap off my day, sweetie and I rode over to Lowe's to have a copy of a key made.  That's right: April got on the back of my bike, suitably attired in my leather jacket, full-face helmet, and gloves. Coming back, she tried my half-helmet and liked it more. This outing was her first time ever on a motorcycle.  She's already looking at changes I could make to increase her comfort! I think the bug has gotten suitably under her skin.

So it is that on day #500, I felt the arms of my love wrapped around my waist as we rumbled through the pleasant outskirts of Raleigh. It's all I ever wanted, really. 

Is the long nightmare over?  While struggling along and enduring transplant, I often had to remind myself that "this too shall pass."  Today, with spring's bright dawns and a bright future ahead of me, I am reminded that ... well, it has.  And while this pleasant state may also change, will change....must inevitably change, it's worth breathing in the air and turning my face to the sun while I have the chance.

Breathe Easy

Post transplant day #491.  Breathing easy.

Today, April 15th, is a momentous day, and will always be so.  In the national brain, not only is it the ever-grim Tax Day, but it is also the much more grim anniversary of the Boston bombings.  In one week, Dzhokar Tsarnaev will be sentenced, most likely to death.  In the national mind, this is justice.  (As a side note, I find it exquisitely ironic that his brother, Tamerlan, seemingly the mastermind behind the bombings, was killed not by police bullets, but because his own brother RAN OVER HIM in an attempt to escape.  Not once, but TWICE.  Thanks, bro.)

But in my brain, April 15th will forever be the anniversary of one of my dear friends and cysters, Ellie Alexandra Levy​, getting her second double-lung transplant.  It was the beginning of a period of time in which, after extensive recovery, Ellie finally breathed easily, without assistance, without oxygen, without coughing.  And I can tell you from experience, it's those first weeks free of all that, able to take deep breaths and laugh with abandon, that feel like the greatest mitzvah our donor could do us.  Extended life is wonderful, but just finally being able to draw breath without effort is in some qualitative way the more precious gift.

In the CF community, when asked what it's like, we sometimes challenge the questioner to breathe through a straw for several minutes, until they can't take it anymore.  That's like the restriction we experience daily and forever -- until a day like today.  Until a hospital says yes, a donor's family says yes, a recipient says yes please.  All the struggle to breathe and stay alive gathers up into a single moment in a pre-op bay, like a firework waiting to explode, until the word comes back that the lungs are good.  Then a beautiful chrysanthemum of fire blooms, sending nurses and doctors scuttling every which way, and the chrysanthemum expands and expands over time through surgery, ICU, stepdown, recovery, and finally -- as the chrysanthemum fades from the night sky leaving it as clean as it was before -- a life regained with effortless respiration.

Today, as I sit here sipping coffee and taking deep and regular breaths, my chrysanthemum long since seen and applauded, confident that my exercise will be harder on my legs than lungs, and once again able to fully enjoy my life, I am reminded that Breathe Easy is not just a send-off salutation for the dead.  It is a wish for the best possible outcomes, as simply and sincerely said as Happy New Year to the living, whether respirationally challenged or not.  For Ellie, and Heather​ and Jerry​ and Katie​ and Piper​ and April​ and Michael​ and Eryne and Jen​ and Denise​ and all of us pre and post, living or no, on April 15th my day-long prayer is: Breathe Easy.

Waking the dead

Post-transplant day #480.  Waking The Dead

Coming back to life has been a long haul.  It is more than rehabbing the body; it also involves rehabbing one's life. 

As I slowly deteriorated in the years before transplant, I had to cease activities that I loved, and felt like I was dying piece by piece; my corporeal death would merely be the last death of many.  First I couldn't climb anymore.  Then I couldn't motorcycle.  I stopped writing for Thunder Press. I quit teaching at FIT. Then running became impossible, and finally cycling.  It could have been worse: I could have gotten so weak that I couldn't walk anywhere or climb any stairs. 

The transplant itself, while not uncomplicated, is a fairly straightforward event.  A sort of K/T Boundary separating the Before from the After with a traumatic and (systemically) calamitous event. 

Once the damage is done, the body slowly comes back to life and the mind follows.  I have remarked in this journal before on some of the major milestones: My first night of good sleep, my first run, my first miles of cycling.  Then, back in NY, my return to work, both design and tutoring; I picked up climbing again a couple of months ago, reveling in an unexpected strength and endurance, even if it's obvious I'm out of practice.

Last summer, I borrowed a buddy's Sportster 883 to participate in the Long Reach Long Riders ride.  It was a brief return to motorcycling.  Sort of a litmus test as to whether this was still for me.  Was I still interested?  Could I still handle the rigors of biking?  It was obvious I was far weaker than I used to be and I think that contributed to my parking lot drop that caused my ankle injury.

But now, after another nine months of steadily growing stronger, I have brought home a new motorcycle, a Harley Davidson XL1200T.   I feel I'm once again a biker.

Some of the neighbors don't like Harleys.  They think they're unnecessarily loud.  Strictly speaking, that's not true - from the factory they are fairly well muffled and have a comforting rumble.  But most people change pipes or at least the mufflers in a bid for more power.  They change the air cleaner and the EFI mapping, too; altogether a change known as the Stage I conversion.  These pipes tend to be ...  more open-throated. A wise biker chooses a pair of mufflers with a balance of power and silencing.  I hope I chose well.  I'm not trying to be a bad neighbor, honestly.

Now, my first bike had a name, which she earned after my first and only accident on that bike.  "Roxie."  (After the murderess Roxie Hart, of course.)  Many people name their vehicles.  Heck even my bicycles have names, which they whispered to me after a period of time.

I wasn't going to name this bike yet.  Wanted to break her in and see what bubbled up.  But something happened two days ago, when I signed the final paperwork at the dealership.  I got to talking to my dealer about why I'd been gone from biking for so long and another dealer overheard me talking about my transplant.  He asked what organs I'd gotten and said double lungs.  He then asked a question most people don't usually get around to asking at Question #2:  what was the underlying condition?  I told him about my CF.  Shortly after he brought a young saleswoman over from the merchandise side of the store, who introduced herself as Katie.  She is young, owns her own Sportster...and has CF!  We stood a respectable distance apart.  She sees my old CF doc.  And she is far, far from transplant.  She could be my age or older before she'll need one.

But just meeting this young woman made me aware of the nerve-like connections throughout our two communities, CF and bikers. It is bucket-list material for a lot of transplanted CFers to get a Harley or get back on their old ones.  And Katie and I had both been friends of Brian Jonson, who founded the CF Riders.  Perhaps it is our burden to take up - we who are living on after him.  We have a lot more to talk about in the coming months, but something about her reminded me of so many of the other fresh-faced CF youths.  Those who you just want to reach out and hug and say "I'm so thankful you're alive!"

On the way home, I thought about that encounter and about the CFers I'd never be able to reach out and hug again.  I looked in my little bag of goodies the dealership had given me and there was an angel's bell, given to me by my dealer. (You can't buy these for yourself.)  "I'll certainly need an angel watching over me as I enter this next phase of life," I thought.  And it became clear I had to name her after a CFer.  The name of my new bike had suggested itself to me.

But dare I name a bike after a dead woman?  I mean it as token of respect; a pledge to never forget.  Some people get vinyl lettering put on their cars, trucks, or bikes for deceased family members, or get friends portraits airbrushed on their tanks or tattooed onto their skin.  Isn't naming your bike for that person as basic a way of ensuring their immortality as any of those other rituals?  After all, we name our KIDS after dead relatives; this could hardly be more creepy.  Could it?  Fuck it; I stopped worrying about it.

And so it is that yesterday afternoon I received delivery of my new baby, Ellie.  This afternoon, Ellie and I will go for a long spin together, given decent weather.  We will start to get to know each other.  And if there are angels, I hope the real Ellie will be riding along, with her arms wrapped around my waist for safety.

Tonight I am reminded of the religion of the road; the hundred little practices and superstitions that bikers follow, hoping to ward off bad luck and bad weather.  The blessing of the bikes. The prayer circle many groups engage in each morning before hitting the road.  And I promise, to my donor, my friends, and my family, that my most reverential prayer for blessings and my most sincere promise to drive my safest will be encompassed each time I breathe my bike's name:  "Ellie..."

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

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.

Muddling through

Post-transplant, day 374. Our troubles will be out of sight.

A year ago tonight, I walked out of Duke hospital, stitched and stapled, hacked and hurting, but transplanted, alive, and walking. Oh, my donor, thank you.

Two evenings ago, I was again discharged from Duke, after a week in the hospital. I won't go into the whys and wherefores, but it boils down to this: if there is sedation and biopsies, then there will continue to be spells in the hospital immediately after my bronchs. It appears to be a fact of life.
While in the area and in hospital, I had time to see friends, both in and out. I was glad to catch up with Jason, who has become so strong in rehab that they’ve taken him off the transplant list indefinitely. He’s even off oxygen most of the time. But most of the friends I caught up with were in the hospital; not outside, not healthy.

I am beginning to get a little too familiar with 7800. Down the hall, in one of the six ventilator-support rooms of the ward, I found my oldest online CF friend, Lori Moriss, who was already talking about leaving, as she's on the tail-end of an exacerbation. She’s on ventilator support permanently and is not eligible for transplant. But she has spurred me onward and it was wonderful to talk with her through her doorway. There was also Christy Hubbard Hamilton, much to my surprise. She, too, was wrapping up a hospital stay for infection and left before I was discharged. Good catching up with her.
What most surprised me was finding Miranda Fae still in 7800. She is a re-transplant and has been recovering for five months so far. I had figured she’d be long gone by now. She had such energy and worked so hard in rehab before transplant. But this transplant, she says, has been as hard as her first one was easy. Night and day.

Of course, I visited Heather James several times over the last couple of weeks, trying to buoy her spirits. Her recovery continues, though slowly. She is basically tied to her hospital bed with tubes and wires, except when walking laps. I hope she’ll be moved to stepdown soon. One day I stepped out of my room to walk laps and was completely surprised to find Heather had come to visit me! In a wheelchair, surrounded by equipment, nurses, and her family -- I can appreciate the effort it took just to get off her ward, much less come over to Main to see me. It was the best visit of my admissison.

The rooms of 7800 haunt me somewhat, knowing who stayed where and for what reason. Just two rooms down was the room where I last saw Ellie alive. As I walked laps, I kept passing her room, expecting to see her in there. But no…just some other random lung patient whom I never saw out of his room. I was most pleased, though, to find out that the front desk has received a matted and framed picture of Ellie that her father sent and will soon put it up on the wall. In a way, I'll always know where Ellie is.

I think I needed this return to Duke to assure myself that there is a foundation that does not move, though the people we love float in and out of our lives. In the last few days, there have been a lot of deaths in the nation-wide CF community, including some acquaintances of mine. A couple were post-transplant, getting hit by rejection or cancer. It is a sobering reminder that we’re all in a continuing fight, that CF has no mercy, and does not take a break for the holidays. Being a CF patient, especially a transplanted one, means that our very best friends are spread far and wide and we see them seldom; yet when we do, we make the most of our brief time together and we never forget to say "I love you", for the next day one of us could be gone, our lives as easily blown out as a candle.
Tonight, I am reminded that someday we all will be together -- friends here and gone -- if the fates allow. But until then, we'll have to muddle through. Somehow...

Frozen

Post-transplant day 364. Frozen.

I've been off the air for almost two months. I've been busy with work, with life, with the end of life. And, I must acknowledge, there are some personal problems that are unresolvable right now and which keep me offline. Thankfully, I have April to keep me steady.

To my dismay, I must start this blog entry with expounding on egregious news. After months of me begging all of you to pray for Ellie, she did not recover. In the afternoon of November 5th, she breathed her last. Her death did not come as a surprise, but it's incredibly painful anyway. A week later, I attended her funeral in Miami. Her last boyfriend, Andrew, and I were the only representatives of the CF or transplant patient communities, as far as we could tell. I wish we could have given Ellie a Viking's funeral; it would have been more fitting for a Warrior.

Now, I've had friends die before, but Ellie's death has impacted me like no other. My world is absolutely shattered. Imagine yourself living in a world as big as ours, but fitting inside a blue glass sphere. Then imagine looking up at the sky and seeing cracks appear, then gaps, then jagged holes as large chunks of the world fall away into nothingness. This is how it has been for me since November 5th. It may not help that her death was hot on the heals of Friend Brittany Wood.

The unholy thing about making friends, especially in the CF world, is that you may have to watch them die. And yet to withdraw from the CF world (such as it is; connected mostly by Internet) is to throw in the towel, give up on part of the fight. I won't do that. How can I abandon my friends?

Speaking of friends, I was reconnecting recently with grad-school colleague David Martin. He and I had been talking about transplant via Messenger. We had tentatively set a day to get lunch, but medical problems got in the way. Not mine; HIS. David had a rare blood cancer, and he was going to get a bone marrow transplant. But for some reason nobody can figure out, he took a sudden dive November 11 and he, too, "stepped behind the veil" as one of his friends put it.

So with Ellie's and David's deaths still weighing me down, I came down to Durham and walked into Duke hospital, where it all happens. My last rehab friend, Heather James, is in the ICU there. (A recap: she finally, after 280 days of waiting, got new lungs and liver. She also had a bunch of other stuff done at the same time, so she won't be undergoing anything more than a sinus cleanout after she recovers.) Recovery is taking a while, but she walks a little bit farther each day and she inspires me with how much strength she displays. Heather got her call a week after Ellie's passing and I can't help but feel Ellie had some kind of hand in this.

And yet...I am lost. When the Duke nutritionist asked how I was feeling, I could only tell her that I'm parked in neutral. I'm not feeling *anything*. Like something inside is frozen. The only exception to that is my feelings toward people I love, but even those are a bit blunted.

Tonight, the eve of my transplant anniversary (I was actually being prepped for surgery right now, a year ago), I am reminded how fleeting our connections are. Love each other while you can. It's a wintery night out there, and I'm thankful that I get to cuddle up to my girlfriend and love her with all of what's let of my heart; keeping the emptiness, the frozen emotional wasteland, at arm's length for another night.

I will not remain silent.

Post-transplant day #310.  I will not be silent.

This last month has been unusually hard on the cystic fibrosis community, with a high number of deaths of both pre- and post-transplant cystics, and the death of the wife of the Cystic Fibrosis Foundation's COO. In response, there is currently a 65-hour silence going on in the CF community, with many of us abstaining from social media for that time, I think in an effort to get the world to see what it's like when so many voices fall silent.  But as Stalin said, "When one person dies, it's a tragedy; when a million die, it's a statistic."  So it would be if we all fell to the scythe at once. So I am not participating. 

I will not be silent.  I will not let my voice be suppressed, I will not let my voice be drowned out, I will not let my words be overrun by the blatherings of people whose most worrisome concerns are whether the potholes get filled or the trains come on time.  I will not stop talking about my cystic fibrosis, nor about other people's CF, as they choose to share it.  I will not keep my thoughts unvoiced when doing so means giving an easy rest to those who otherwise will not care.  In this society, with so many bits of minutia crowding each person's attention all day long, it is not just that my voice that can raise an important matter to the light, but can educate the unknowing, bring passion to the vapid, elucidate my fellow cystics' struggles, and, yes, even glorify our small achievements.

Most importantly, my voice gives some life to the dead.

Four days ago, another CF friend of mine, one I've known longer than average, passed away.  Brittany Wood was the same kind of CF Warrior we all inevitably become, fighting this disease tooth and nail until, sadly, it finally claimed her, casting her husband adrift.  Just days before her, Kenna Taylor, just a kid.  Why would I be silent about their deaths, when I mourn them as I mourn my own family??

And not only do I speak, but I don't just speak in the direction of those who are primed and eager to listen, my fellow CF Warriors.  Rather, I write and post so that YOU, my NON-CF friends and followers can live with me ... for a heartbeat. 

I speak so that you will feel what I feel...
I speak so that you will experience my distress.
I speak so that you will feel the rush of my endorphins.
I speak so that you will taste the same salty sweat from exertion.
I speak so that you will hear the same music I do.
I speak so that you will tear your hair with grief as I do.
I speak so that you will love the same way and the same people I have loved.
...I speak so that you will understand the world as a cystic does.

Today, Manda Thom passed away after a long, difficult battle.  I am devastated. She was 17 and had just gotten her new lungs less than two weeks ago.  I don't know what went wrong, but I do know this should not happen!  So how am I, one of the voices she leaves behind, expected to remain quiet in this sixty-five hours of silence??  The dead will fill that silence quite well, with no help from us.

Tonight, I am reminded of the need to speak and the need to do so regularly, forcefully, and both detail and volume if necessary.  I am reminded that while a movement of inaction, such as a boycott or sit-in, can have impact, it can only have impact if that movement has a voice to explain it.  Maybe I have missed the point of the Sixty-Five Hours of Silence; perhaps someone can explain it to me....in...another 35 hours.  Meanwhile....

I will not remain silent.