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Friday, June 29, 2012

My L.A. Odyssey Part 7: Diagnosis and Time Warp

Friday, my parents and I get up before dawn and drive to Oklahoma City.  For the first time ever, I hope I’m having a rejection episode.  If that’s the case, I’ll be put in the hospital and given strong anti-rejection drugs that virtually take my immunity to zero.  But, my pancreas may start working again.  If it’s not rejection, it means the pancreas is just worn out.

We're at OU Med Center, where it all began in 1998 with a new kidney and pancreas.  I want to go back in time to when I was full of optimism, full of excitement and wonder about what my body was about to experience.

My battered veins don’t want to cooperate and it takes several tries before they can draw blood.  The result: it’s not rejection.  Aside from high blood sugar, all the other numbers are normal.  I'm diabetic again. 

Then I get more bad news.  I have t be cancer-free 2-5 years before I can list for another one.  That means I’m looking at another year or more before I can be put on the waiting list.  I will have to wait before I can wait.

Now I have my answer.  It’s a long, quiet drive back to my parents’ house.  Everyone is very tired.

That evening I was feeling restless and sat on the covered patio behind my parents’ house.  In the distance I heard cheering every few seconds and remembered Greenwood High School was holding graduation at the football field not far away.  I walked to the front and stood on the driveway, caught up in the swirling memories of the past couple of weeks and a graduation ceremony on that same football gield thirty years ago.  How can it be thirty years already?  But the past week made me feel every minute my age and then some.  The images of my high school graduation flicker by me, but none take form.

I’m a middle-aged man standing on a driveway listening to a man’s voice on a loudspeaker.  I can’t make out what he says but I can tell he’s reading names.  Applause and cheers follow each one.  A few lots behind me, little kids play in a yard.  They’re really little—much too young to imagine high school, much less have trouble remembering it. 

The hot breeze whips around my face and I am in a time warp.  In only a few days I’ve been drawn backwards from racing toward my future at an amazing conference in fast-paced L.A. to high school graduation in 1982.  I’ve just been diagnosed with diabetes again, like when I was twelve.  Except I’m not back there.  These are just pale watercolor shades of the past being brushed onto the modern version of me.

The task ahead of me is to blend the new ambitions, plans for the future, and a newfound self-confidence and identity with a disease I had through my teens, twenties, and early thirties—a disease that damaged me, a disease that I hated and felt I had conquered 14 years ago when I got the new pancreas.  It will be a struggle to keep from being sucked into the diabetc time machine pulling me back there.

Monday, June 18, 2012

My L.A. Odyssey Part 6: Generosity Is Never A Mistake

It’s Thursday and I’m scheduled to fly home.  I spend part of the morning standing in the small front yard, enjoying a final moment of flawless humidity-free California weather and watching life in this bustling little L.A. neighborhood take place.

Helen pulls up in her car and passes me with a quck, “Hello” like you say to a stranger.  She doesn’t recognize me because I’m wearing a ball cap and sunglasses to cut down on the glare.  And I shaved my beard off the night before.  I didn’t bring the clippers I use to trim it, thinking I would only be in L.A. six days.  It was looking a bit too Grizzly Adams and I might be put in the hospital in Oklahoma City.  I wouldn’t want to tend to it then, so I used the last of the stored power in my shaver to cut it off.

I realize that not only will I be different when I go home, I’ll look different too.  I look like I’m twelve when clean shaven, which is ironic because that’s how old I was the first time I became diabetic.

“Helen, it’s me,” I say.  We laugh, pack my things in the car and head toward LAX.

“Thanks for taking me to the airport.  That’s so nice of you,” I tell her. 

She talks about how doing kind things is part of being human.  It really is no big deal for her to do this for me, even though it takes an hour to get to the airport.  She talks about the importance of giving and tells me she’ll tip the airport employee who assists me from the check-in counter to the gate. 

“Oh, you don’t have to do that.”

“Generosity is never a mistake,” she says and backs it up with a story of a time when she gave a gernerous tip and it ended up making a big difference down the line because someone remembered it.  I turn her words over in my head.  “Generosity is never a mistake.”  Five simple words that mean so much when they stand together.  I hope I can carry that with me after I’m home, after I’ve dealt with gall stones and being diabetic again, after some semblance of order is back in my life.

We stop at a Taco Bell near the airport. 

“Now I can say I took a beautiful actress to lunch,” I joke.

Helen waits with me until a guy appears to assist me.  She presses some bills in his hand and I hug her good-bye.  L.A. certainly has been surreal but in a mostly positive way.  I’ve had guardian angels in the City of Angels.  Maybe those Spanish missionaries hundreds of years ago were on to something when they named the place.

Chatting with the guy assisting me, I find his wife has a survival story of her own.  It seems all I have to do is tell my story and I attract people of a like mind.  I give him my card and tell him to have her e-mail her story to me.  It feels good to be back in this mode, going from medical case back to Man With A Mission.

I get to sit on the first row of the plane next to a guy with an injured leg and on the other side of him is a woman holding a small dog that can sense the onset of a seizure.  They are amazed at my story.

“You’re a miracle,” she tells me.  I’ve heard this before but my recent health setback makes it harder to keep that in mind.  But, like in LAX, it feels good to be back in that mode I was in at the conference, even if only for a couple of hours.

I’ve been so busy talking, I’m caught off guard when the wheels make contact with the runway.  I’m back in the Ozarks.  Part of me is relieved to be home.  Part of me wants to stay in suspened animation because early in the morning my parents and I will head to Oklahoma City to find out what, if anything, can be done.  I’m back from L.A. but the odyssey isn’t over yet.

Tuesday, June 12, 2012

My L.A. Odyssey Part 5: The Right Way to Start A Day

Tuesday morning I wake up very early after only a few hours of sleep, but with a smile on my face.  I can feel it.  My first thought: 

I refuse to let this get me down.

What a powerful moment it is to realize I have a choice in how I feel about this.  I never expected to reach this stage so fast.  From the intense high of the conference to the extreme sadness of accepting the failure of a transplanted organ, I’ve been hit by an emotional tsunami.  Now I find myself greeting the new day with a smile, amazed at how fast I righted the ship ater that.

With my mind at peace again, more ideas come to me like they did at the conference.  I pull the notebook from my backpack and write them down.  I’m not going to let this diagnosis stop me from moving forward.  It just means now I’ll have to do it as a diabetic. 

I spend the day resting, watching TV, and feeling thankful for a place to stay.  I could have been cooped up in a motel, feeling very depressed and alone until my flight home.

Later I’m invited to join Karry in a celebration dinner for Xerxes, who graduated from college today.  With us is Helen, another Texas native Karry met in L.A.  She has acting experience, including small roles in TV and movies.  She’s funny and lively, which keeps my mood from taking a dive.

We eat at Farfalla, an Italian bistro not far from Karry’s house.  I’m overwhelmed by all the choices and it’s hard to decide.  Being diabetic again, I know I can’t eat all I want, but my appetite still hasn’t returned full force anyway.  This outing is exactly what I needed—laughter, chatter, good food.  Now and then I look around the dining room at the d├ęcor and the other patrons and feel at peace.  I never expected to get a taste of how Angelinos actually live. 

When the check arrives, I try to pay for everyone’s dinner but Karry won’t let me.

“just let this good thing happen,” Xerxes says.  After 20 years in the U.S. there’s barely a trace of a Dutch accent.  I was raised to show gratitude for kindness, so it’s not easy to go without repaying these people.  These extra days tacked on to the end of my trip to L.A. are proving to be interesting.  The lad-back Southern California attitude appeals to me.  I see why so many people are drawn to the place.  I didn’t expect to like this city so much.  But, there are plenty of things about this trip I didn’t expect.

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Tuesday, June 5, 2012

My L.A. Odyssey Part 4: Life Lessons of the LaBrea Tar Pits

When I am discharged Monday evening Karry picks me up at the hospital and we take my prescription to a CVS Pharmacy.  While it’s being filled we kill time by driving around L.A. and I get to see the downtown skyline lit up at night.  It’s easier for me to see the builidngs that way, without the glare of the sun.

I’m feeling pretty drained and disconnected to reality.  Here I am, just out of the hospital over a thousand miles from home, in a big city where I’ve never been before.  I’ve lost weight from the nausea and little to eat after that.  I feel like a refugee.

Karry, who started out as a friend of a friend, turns out to be one in a million.  His dry sense of humor and Texas accent put me at ease.

My arms have four or five pieces of gauze taped to them where IVs were removed and blood draws (or failed attempts) took place.  After chemo last year, my veins are shriveled.  It often takes several tries to start an IV or draw blood.  There are a few purple spots not covered by bandages. 

“I must have scared some of those people in CVS,” I say.

Without missing a beat, Karry says, “I just mouthed the word ‘cutter’ when anyone stared at you.”  It’s the first good laugh I have in days.

“This is the Museum District,” he tells me.  “Over there are the LaBrea Tar Pits.”

“What exactly is that?” I ask.  I first heard of the tar pits when I was a little kid and pictured a big hole full of tar.  I always wondered why people would want to look at that.

He explains the tar pits have been there a very long time.  It's loaded with fossils and people still dig dinosaur bones out of the ground.  “They got mired in the tar and died.”

That must have been a horrible way to die, getting stuck in tar and not being able to move, gradually starving to death.

When we pick up the insulin at CVS they’ve given me vials and syringes.  “It’s supposed to be in the pen,” I tell the pharmacist.  It doesn’t take him long to correct the error.  If I’m going to be diabetic again, I’m going to do it the modern way.  This time it will be different—as different as I can possibly make it be.

That night, on a folded-out day bed in the spare bedroom/office, I don’t sleep well.  It’s a residential area, but definitely more urban than the funky maze of narrow one-way streets of my secluded little oasis in Fayetteville.  There’s more traffic and I hear people talking on the sidewalk until very late.  My mind is too cluttered for sleep, anyway.

“They got mired down in it and died.”

I realize that’s the lesson I needed at that moment.  Maybe it was worth missing my flight home the day before so I could hear that phrase and take something from it.  If I let myself get mired down by this latest development, I won’t survive.  That’s true of anything.  To survive, we have to be able to keep going, to move beyond the things in life that would mire us down.

Saturday, June 2, 2012

My L.A. Odyssey Part 3: Seismic Jolt in California

Make sure your hands and feet are secure as well as any personal items.  This rollercoaster ride is intense.  After being inspired by Steadman Graham to play up my own quirky individuality in one of the most powerful speeches I’ve ever heard, I can no longer contain the bubbling, straining sickness in my gut.  Something I ate for lunch is unhappy being cooped up in there.

While everyone else stands to clap, I hurry for the door, but James says they will interview Mr. Graham.  Damn! I hate to miss that.

I only make it as far as a trash can where I throw up.  Classy.  At least almost everyone else is still inside.  Back at my room, I get sick a few more times.  Knowing how fast and serious it is for a kidney transplant recipient to become dehydrated in this situation, I have the hotel call paramedics.  This will take IVs to fix, no matter what it is.

Minutes later, I’m seeing the bright lights of L.A. on a Friday night from the back of an ambulance on my way to Marina Del Rey Hospital, the nearest one.  The next few hours are a blur of throwing up, listening to other patients on the other side of the curtains, pricked fingers, high blood sugar(!) and insulin injections.  It doesn’t take me long to realize something’s wrong with my pancreas.

They admit me to the hospital, perform several tests: CAT can, X-rays, an untrasound on the pancreas.  Between all that are more finger sticks followed by insulin shots.  I’m told I have several gall stones.  There’s a slim chance this is causing the elevated blood sugar.

I’m missing the last half of the conference.  That feeling of being on top of my game, of it all coming together like magic has been replaced by dread.  I’m in a daze at how fast it happened.  To go from such a pinnacle to a failed transplanted organ is a huge drop even by my standards.  Mostly I just sit in the hospital bed without the TV on.  I’m trying to listen to my body.  I’m trying to listen to God.  All I can ask is, “Why now?”  Not even “Why?” but “Why NOW?  When I’m on the verge of telling my story to millions of people and helping millions of people.  If it’s what God wants me to do, then wny one more obstacle?  Why one more delay?”

My consolation in all this is the excellent care I get at the hospital.  The absolute nicest doctor to ever treat me is there.  They call him Dr. H because his name is hard to pronounce.  The caring attitude of the nurses and everyone I encounter puts me at ease.  Yes, it sucks being in a hospital a thousand miles from home, but they are making it much easier.

On Sunday, I miss my scheduled fight home.  I was looking forward to sitting with my friend, Kim, on the plane and talking about the conference.  All those ideas I had, knocking down the door, will have to wait until my latest health crisis is behind me.  It’s frustrating.

On Monday, a woman with a thick “Fargo” accent tries to explain the talking glucometer.  I can understand her accent, but she has a strange way of phrasing her words and it sounds like gibberish.  Finally, I think I get it. 

I’m back in the world of the diabetic.  For fourteen years I was a fugitive, though I thought I was a legal parolee.  This time, I’ll be a diabetic with worse vision than before and with a transplanted kidney to take care of as well.  This realization weighs on me.  It starts to draw me under.

I came to L.A. thinking I would be different when I returned home.  I was right, but this part was totally unexpected.

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