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.  

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.