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.


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!