November 16, 2016

The fault in MY stars.

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

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.

So, once again, I have cancer, this time of the liver.  And 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 careful 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.  

Okay?

Okay.

September 5, 2016

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.


August 28, 2016

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.  


April 27, 2016

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.  


October 25, 2015

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.