Every One An Athlete

Post-transpalnt day 48, pulmonary rehab #22.  Every one an athlete.

"The difference between a jogger and a runner is an entry blank."  I first heard this phrase on Phedippidations several years ago.  It is true enough in its strictest sense; but when applied to include all athletic endeavor, the sentiment becomes clearer, crisper and sharper; the truth of it forming like an old Polaroid slowly developing in your hands.

Last Friday was not the best rehab day for me.  I had knee pain, I was rushed, I had blood sugar issues.  And I questioned myself: Am I an athlete?  I certainly didn't feel like one.  I asked myself what makes an athlete?  I certainly have the training and knowledge of an experienced athlete - I know a bit about good nutrition, training cycles, race strategy, and recovery.  I know from hard experience what over-training is, how long a sports injury can sideline you, what it is like to pour hundreds of hours into getting ready for a single event, the thrill of crossing that finish line.  But am I yet an athlete?  I mean, I haven't truly RUN a race in years.  Even when I was running, it was....poor.  My best finishes were mid-pack.

And yet - I must remind myself - I finished. Always. Better yet: I started.  Because no matter how many races entered, no matter how many training miles, I never felt like an *athlete* until I crossed the starting line.  And me being me, I usually finish what I start.  I have plenty of races I entered but didn't attend due to injury, bad scheduling, or inadequate training; but I have yet to fail to finish any event I started.

But does finishing a race make one an athlete?  Does starting it? 

Today, in rehab, I looked around at my fellow patients with pride.  Most of them are not fast; most are not wholly capable.  The pre-transplant patients work their butts off despite being crippled by an inability to oxygenate or blow off CO2; the post-transplant patients can breathe, but are crippled by the massive bodily trauma of the transplant itself, not to mention the secondary surgeries and procedures that leave us festooned with implanted tubes of various kinds long after we've left the hospital.  Every single one of them is fighting for survival and every single one is doing so by getting off their asses, brushing off the Cheetos dust, and making *motion* happen.  They do so to the best of *their* abilities.  They don't just talk about training; they show up and they do it. 

Does that make every gym rat in every Gold's Gym an athlete?  I'm not so sure.  I surmise that a lot of what makes an athlete has to do with willpower.  If it takes little willpower and even less effort for you to do 20 minutes on an elliptical, then I have to doubt your commit to personal fitness.  But if the task ahead of you requires great amounts of willpower, 100% effort and you still are doing it every day - then you've stepped into the arena with everybody else properly termed "athlete".  For I have seen the strongest of men laid low enough that 1 pound hand weights were too much by the end of 12 reps - yet. he. still. lifts.

I have a lot of athlete friends who perform at a very high level - Boston Marathon qualifier types; triathlon regulars; Ironmen and Ironwomen.  But their drive for achievement physically is no greater than many of the patients at rehab - it is just applied to different activity and at a different level.  I cannot properly call them athletes without also deeming my fellow patients as such, too.

But am *I* an athlete?  Today I did not feel energetic, after an early morning start at clinic.  But buoyed by good news (getting cleared officially by my pulmonologist and assistant tx surgeon each for light jogging, light cycling, rock climbing, and - eventually - even SCUBA), I tackled today's rehab the best I could.  And - to my surprise - did a little better than I thought I would.  The bike, for instance, was supposed to be 17 minutes on Level 3, 3 minutes on level two.... but the athlete in me just shrugged and burned through a full 20 on level 3. 

That effort brought back to me a conversation I had with Piper Beatty when I mentioned getting my bicycle back out of the closet and going on that test ride yesterday.  "You're a badass, as usual," she texted.  My reply was that I am merely a reflection of the company I keep, meaning that my own efforts are nothing more than an emulation of the best of what I see in my friends. It's a question not of present physical fitness, nor inate ability, but of willpower.  I see it often in rehab - patients suggesting to their RTs, "you know, I think I could try the heavier ankle weights today" or "this theraband has gotten too easy; can I try the next color?"

My rehab friend Kyle had his first day back today after being released from the hospital last week.  He did not have an easy transplant course - his was one of the most convoluted cases I know of.  Kyle required an additional kidney transplant and had many complications.  He spent six weeks in the hospital, most of it ICU.  And yet today there he was happily chipping away at the physical tasks before him.  And when we saw each other and I approached, his first words were, with a smile: "Cris!  How's your recovery going?"  Well, Kyle, that's what I was about to ask you, buddy...

Today, I was reminded that being an athlete is not about the level at which you perform, but about how you perform at the level you're at.

O, Death

 Post-transplant day 43.

"O Death," someone would pray,
"Can you wait to call me another day?"

 Let's not fool ourselves.  This isn't about illness or transplant or recuperation.  It isn't about a "viable treatment strategy for end-stage lung disease."  This is about cheating death, plain and simple.

We tend to avoid using that term, "death".  As if we're afraid, as humans, that by invoking its name, it will come all the faster.  We swerve away from listing it in our minds as among the possible consequences of getting a transplant, or not getting one in time.  The docs are not so averse.  They are blunt and up front about that possibility.  They have to be; because it happens.  From time to time.

Let me be blunt.  Whenever I used the phrase in writing or conversation, "I don't have much time left," I wasn't kidding.  As my PFTs plummeted and my CO2 levels climbed, I could feel death closing in. I had a bad scare one day in rehab about seven weeks ago when in the midst of CO2 induced tunnel-vision, I mistook Piper Beatty's figure as the Grim Reaper himself.  I am not one to believe in the supernatural - but my heart skipped a beat.

Death also haunts us even once lungs come.  Death is waiting in the operating room, in PACU, in ICU. It is to the surgeons credit that only 1% die on the operating table these days and fewer than 5% before leaving the hospital. Death waits for us even then, coming in the form of bacteria, viruses, fungii, parasites, rejection, or cancer.  These target the immunosuppressed.

But the possibility of death is never far away.  I have one grandmotherly friend in ICU sixty days now and has been shocked back to life a number of times.  And another New York-to-Durham CFer, pre-tx, had a heart attack during routine PFTs....he never came back.  And even though well into recovery, my friends in the hospital experience setbacks that still carry the risk of death, however slight.  They are discouraged and they are scared.  Typically, whatever problem it was eases and nobody thinks of death anymore, only recovery and life.

If you ever, at any point, thought, "Oh, of course Cris will get lungs!" then be reminded that there was never a guarantee and that the situation was not good.  My lung volume was dwindling weekly. My CO2 retention was rising geometrically.  I was one more clinic appointment away from being put on bipap.  I was not taking it for granted that I'd live to see New Year's, though I like to believe I could have hung on for several months longer.  I was worried.  But always, always I had faith in Duke.

 O Death please consider my age
Please don't take me at this stage!

Why do I write about this now, six weeks post-transplant?  Should I not be celebrating every small gain, every longer stride, each and every sequential breath?  Oh, I do!

But the fact remains that in the last four days, I've come across four notices of the passing of CFers.  None of them I knew personally, all younger than me.  Cystic Fibrosis still kills and it kills kids.  I don't think any of these four even had obtained their 30th year!  And I watch the behaviours of other young cystics - somewhat self-destructive behaviours - and I'm terrified for them.  They've fought against this disease for so long, they've forgotten that death is a real possibility.  All it'll take is the right massive chest infection or bowel blockage.

As due diligence toward a future project, I'm delving into the mass of CF-focused narrative literature.  There's a certain foundational reading series that is "required" of the knowledgeable CFer and I've been lax on reading anything but the Cliff's Notes versions.  Alex, The Life of a Child; Sick Girl Speaks; The Power of Two; Sixtyfive Roses...among others.  I have noticed that for each book that talks of triumphing over CF, there is a book written by the survivors - and in these books death wins.

Of course, Death comes for us all.  It's a given.  But being 42 years old, and highly privileged to know even older CFers such as Jerry Cahill, Lynda Jensen, and Janine Ullyette, I want to strike out against Death with the battle cry that we should ALL live to enjoy achy joints and greying hair!

All of this makes me angry.  And all I can do, right now, is channel that anger back into my efforts in rehab.  I walk laps faster and faster, push through the pain.  And when in my headphones "O Death" from O Brother, Where Art Thou? comes on, I intersperse my own lyric, whispering: "I beat death. I am beating death. I beat death. I am beating death..."

It is five o'clock in the morning on the 43rd day after my surgeons and I beat back death.   As the snow falls, I am reminded that every coming dawn is another victory over death; that though for the rest of my life, I will be in a pitched battle against death, for each day I grow stronger, I push death just a little farther away.

O Death O Death
Won't you spare me over 'til another year?
Won't you spare me over 'til another year?
Won't you spare me over 'til another year?

Letting the Animal Out of the Ark - or - 40 Days, Part II

 Post-transplant day 40.  Letting the animal out of the ark.

People forget that once it stopped raining and the Ark ran aground, Noah didn't just pop the hatch and release the hounds.  He waited 40 MORE days and nights to open the arc sending out doves each day to test the waters.  Only when he had a sign of terra firma did he open the Ark.

In a way, I am an Ark, too, that had to contain just one animal - the essential me, the athletic and powerful me.  Now, it took a long time to get to transplant.  71 days after moving, 33 days from being listed at Duke, 365 days from being listed in NY.  This ark had to weather quite a storm - and did!

But now recovery has proven to be a waiting game.  I am not allowed to lift above a certain weight until a certain amount of time has passed.  Not allowed to drive until certain time has passed.  Not allowed to jog or bicycle until certain time has passed.  But those timelines haven't been explicitly spelled out to me.  I did return to driving four weeks post, but only because I pushed.  Purportedly, I should be able to return to light jogging at six weeks, though that's in dispute by some of the respiratory therapists.  They seem to think 3 months.

Honestly, I couldn't wait that long.  So today, 40 days from being stitched up and sent to ICU, I went outside and interspersed stretches of walking with jogging for about a mile.

This was horrible.  My legs felt like wooden pegs with raw nerves shot throughout.  I haven't felt this awkward while jogging since...ever.  Even when I was a newcomer to the sport, it didn't feel like this.  But the first short section was the worst, the second better, the third not as good, the fourth segment better than the previous ones still, the fifth hurt a lot more... so a rollercoaster of experiences in one short mile.  But it felt good.  Even the pain in the legs felt GOOD.


But I was well-pleased with my lungs, which expanded and expanded to the limits of my chest cavity.  I didn't have coughing fits.  I didn't have to hunch over and catch my breath or blow off CO2.  I just breathed heavily and deeply.  (I will need to learn to breathe more quickly, I think, and that will come in time.)  It felt GOOD. 

It was generally 30 seconds jogging, a couple minutes walking.  And so on, for a 17:54 mile, my best pace in over a year.

So what should I say at rehab tomorrow?  Put me on the treadmill and let me at it, because I handled it on the sidewalks today?  Yes?

I didn't get around to putting my bicycle together this weekend, but could probably accomplish that mid-week.  I'm itching to put in a few sidewalk miles.

Today, I was reminded that though it will be an uphill physical battle, I still have the willpower to engage in that struggle.

Life After Breath, Part II

Concrete plans for the future start with picking an event.  In the running community, there's an old saying:  "What's the difference between a jogger and a runner? A bib."  The implication is that the difference between wandering along aimlessly and having a goals is PURPOSE.

So the next question after "what now?" becomes: "What is my purpose?"  I recently said to fellow blogger and lung recipient Piper Beatty that I can't go forward from this point living a life half-devoid of meaning, or engaging in activities that don't fulfill at least some good and beneficial purpose.  I can use this as a razor to divide the jobs I should take from those I shouldn't, for instance.  "Xmas windows, ok," I wrote. "Football halftime layouts, maybe not."  The difference being in that the purpose of the latter is mindless filler*, the former makes millions of people smile each season with memories that last a lifetime.

(*Obviously, the NFL attempts to embue meaning to these half-time shows, as they mostly center around saluting the various heros of our society: the military, victims of various diseases, attack survivors, etc.)

So with Purpose in mind, I have already begun to find a strategy for charting my new life, now that I have breath.  I've decided I can avoid the existential angst that comes with a blank calendar by...filling it in.

To that end, there are some very concrete events I can at least plan for and start to train for:

1)  I signed up for the TD Bank 5 Boro bike tour, May 4th. PURPOSE: reconquer a long bike ride as soon as possible.
2)  Talked over a possible timeline for moving back to New York with mom.  Tentatively March 8th-9th.  PURPOSE: to be able to plan out other events around this, events that take place in both Durham and New York.
3)  Verbally committed to riding the 11th annual Long Reach Long Riders ride, July 12th-18th. PURPOSE: to get back to motorcycling in a quick, supported way.  I can borrow one of two bikes, put my gear in the chase vehicle if needed, and have two dozen friends along to enjoy my return to biker status with.
4)  At the same time as congratulating Piper Beatty on setting a new 7East floor lap record, vowed to beat it should I be placed there for recovery after my stomach surgery.  Can I get a LINX, then get up and walk more than 5 miles?  Oh, Piper sets the bar high! PURPOSE: well,....just to see if I can, actually....
5) And...designed a tattoo.  See the pic.  PURPOSE:  to test if I have the kind of balls to actually go through with getting one.  I've never had one and have some pretty strict rules about getting one, not to mention that tattoos are now verboten according to all transplant centers.  And yet people do get them....

And there are other events I will call my coordinator about on Tuesday and push to get scheduled.  I just loathe an unsecured, in-flux calendar.  I want at least a tentative date scheduled for my consult with Dr Lin, for instance, and date(s) for my stomach surgery.

Tonight, I am reminded that we don't live our life successfully from moment to moment and in the dark - we need light to see by, and we bring the light by anticipating, planning, challenging ourselves, and committing.

Life After Breath

Post-transplant day 37. Pulmonary rehab #16.  Life After Breath.

I can breathe again.

So now....what?
So NOW what??
So!  Now what?

Actors rehearse their lines with emphasis on different words to see how things play out; how they sound and feel, and which option works best for telling the tale.  Similarly, up to now, I could mentally rehearse the possible paths in front of me, knowing I'd be heading down this fork or that fork and the more mental rehearsal of the possibilities, the better.

But I'm unprepared for the this advent: the end of the trail.

Let me explain.  For over three years, this transplant journey has been about planning; about learning all the things that could happen, in addition to the things that WILL happen.  But now almost all of those things have come to pass or have gone past me without becoming part of my tale.  The waiting happened, the preparation, the pre-tx rehab, getting all my test numbers just right.  Getting listed, and waiting and waiting and waiting.  THE TRANSPLANT.  The immediate followup care in the hospital and the few weeks after.  The first month out bronch w/ biopsies.  The rehab post-transplant.

But now those rehearsal options and known branches of the future have been lived or not lived and I am running out of path.  My foresight is failing me.  Now the path gets more diffuse, as my particular trail has been trodden by fewer people.  From this point, the stories of those who have gone before me differentiate more and more, though admittedly retaining common themes.  And I am perhaps even losing the trace of my own path.  Now I'm just going on momentum.

Let's make this concrete.  Today I've received several pieces of information that both clarify and obscure the future. 

First, I thought I was doing well, but I found out that my bronch cultures are showing colonization with PA and Mycobacterium Chelonae.  My first post-transplant bumps in the road.  I'm super not thrilled about this.  I don't know how virulent these are, whether I am a danger to my transplanted friends or not, whether these are a danger to me or not.  The doctors don't seem to be in a panic - they haven't assigned any new meds.  Reynolds says I'll likely remain colonized by PA the rest of my life and we will handle flareups when they happen.  So...the days of my CF IVs aren't truly over, I guess.  And the MC will be better defined by a chest CT not being done until the 21st.  I'm told the MC is everywhere in the environment, even tap water, so it's no surprise to see it in my cultures.  But I am dismayed.

Second, I had a chat with my case coordinator at my insurance. There are some good indicators toward me getting a LINX approved.  When I mentioned that I've heard (from my surgeon) that Medicare has begun approving LINX and saw online from other patients that United HealthCare has begun approving LINX, she said that would be very helpful in getting my request approved.  Even more reassuring is that Duke University Medical Center became in-network to my insurance (rather than PPO) on December 1st!  That doesn't affect what I pay, but it does speak to the level of relationship between the two entities - the level of trust.  I hope this works in my favor.  But as of now, I have no knowledge of where in the filing/denial/appeals process we are or when my stomach surgery will be.  There's no timeline here.  I feel like I'm chasing a mirage that I'm required to catch.

Third, how well I am doing in regards to lung function and ability (if not in regards to lung cultures) was reinforced by a discussion with the respiratory therapist in charge of my chart at rehab.  She won't or can't give me a timeline for when I can try jogging again.  Some people say 6 weeks; she thinks 3 months.  I've asked my coordintaor to ask my doctor and surgeon.  I will follow their guidelines.  But for right now, I have no charted future there.

She also wants to graduate me next Friday, on what will be my 21st session, as I'm clearly restored to a highly functional status.  I'll spend my remaining days in Durham working out at the Center For Living, which has a larger gym, but which is not where friends Piper and Denise will be going.  I am going to try to bargain for some extra time at Croisdaile Pulmonary Rehab, so as to have some overlap with the girls.  I feel its important to support them in their first days back; but I also kind of need this for some kind of closure for myself.  Purely selfish.  A timeline is in place - but not one I'm real happy with - it will leave me without completion.

Of course, the girls themselves are another aspect of this existential crisis of unmapped, disappearing trail: Piper is waiting only for a couple of chest tubes to dry up, but there's no timetable in the world can predict when that will happen.  Best case scenario, she'll get out of the hospital Monday and perhaps she'll be back to Rehab Wednesday.  And Denise?  I'm not sure what's keeping her in ICU, to be honest.  She's walking laps there.  Can't speak yet, but that's not a requirement to go to stepdown.  Hell, patients have left stepdown and gone home (and back to rehab) with intact trachs!  I suspect her stay in stepdown will be short, as the majority of issues that have kept her in ICU and would keep her in stepdown have cleared up.  In fact, she's winning the chest-tube race against Piper, I believe.  I must check on her personally tomorrow and get some answers from the nurse.  I'd love to run into her attending or her surgeon and just press for a reasonable-case scenario type timeline. 

Ah, but there's the rub.  You can't put a timeline on ANY OF THIS.  That's not how medicine works.  Our bodies don't punch a timeclock, no matter how much the psyche DOES.  Of late, I have been asked repeatedly when I'm coming back to New York, when I can return to work for these or those people.... I just don't know!  I can't know!  The best I can predict is 8-12 more weeks.  Believe me, I would like nothing better than for LINX to be approved tomorrow, placed next week, me healed up fully and hitting FEV1 100% in a month, and Dr Reynolds saying I can move back at the end of February.  But that's an illusory and distracting piece of wishful thinking - inventing a map in my head of the terrain I'd like to travel, rather than the terrain I will travel.

Tonight, I am reminded that I am not, in fact, clairvoyant and I'm subject to forces beyond my control; that "now what?" may have only the paltriest details, none of them concrete; that "now what?" may be more impenetrable haze than crystal ball.  Tonight,  I can only wait...and walk....and wish.