Thursday, December 25, 2014

Bores


Marriage is effortless at 26. The bleakness, the compromise, the realization that mistakes have been made arrives later in life . Before age 30, conversation comes easily, health is rarely a topic of concern, and one still radiates enough feral energy to enthusiasticlly engage in the strange, random activities that  drive life in the  20s.  As  David Bowie sang
          “ Why do we live for 20 years just to die for the 50              more ahead?"
Spot on, Major Tom.
         One’s energy is boundless in the first score and ten.  One can rise at 4 AM and spontaneously decide to drive through the Adirondacks, all the while debating the best place for an early breakfast in Middlebury,Vermont.          The  20s  go down easy. The years before the offspring party-crash the marriage  feel like one long  seamless date. Who couldn’t have fun hanging with some hottie-fiancee you met in grad school, someone with your tastes, similar  GPA,  GRE or MCAT scores?    Isn’t grad school the ultimate J. date, where couples are matched based on how much Shakespeare/ Sociology/ Krebs cycle trivia one shares with another human being?
I spent my twenties contemplating the future me, the  dull slow- moving  dimwit  I was destined to become. How could the 25 year old me meet the needs of this bald,  petty dullard?  I’d need entertainment.  Female entertainment. More to the point, I’d have to find some one who  would stay interesting  through the years, someone who would keep reading, keep wanting to see the   Warhol exhibit at the Met, someone who would still want to  wander  Dubrovnik’s city walls in her  Velcro orthopedic  sneakers and support stockings well into the next century.
          I started trolling Upstate medical school  for my future bride, someone who would possess the energy and  butt calluses to bike the New Zealand  Alps  thirty years hence.
         And that’s one of life’s key problems. We marry before we realize that someday winter will come, we’ll be old and tired.  And sick.  Let’s not forget sick.
 I chose wisely, although I can’t say Cynthia did as well. Men don’t age well.  We  become boring.  We nap, watch football and stop reading. Our prostates swell, our testosterone  plummets, and some of us contract life threatening disease.
         I stood there, in Albany, in 1987, in front of the Reform Rabbi,  with no idea  of what sort of person  I would evolve into,  no idea who this  stranger in a white dress next to me would evolve  into  the years to come.

Time is the fire in which we burn

 I wish   Ralph Waldo Emerson said this, but it was  Malcolm McDowell,  as Serin, in  Star Trek.           Regardless, he was right.   Time burns away our layers,  strips us of our unique quirkiness, leaving us  husks of ourselves by the time the first AARP  notice arrives.

 Cyn and I have a running joke. Our lives  add up to unchanging summations. Our combined weight is and will always be  330 pounds.  We exercise  a  combined total of 8 hours a week,   We  work a combined total of 97 hours a week. Our combined salary hasn’t changed in  decades.
         This calculation demonstrates a bleak but  accurate truth: As one of us succeeds,  the other  falters. Marriage is a zero sum game.  It was true when I was a fellow, working 60 hours a week while Cyn worked part time. It’s true now. My body decays under the auto immunological  onslaught of GVHD.  My muscles weaken from the high dose steroids. I stagger home at the ungodly hour of 4 PM,   diving into bed,  hoping I’ll regain enough energy to be a proper  spouse  when Cyn gets home.
          Meanwhile, in Zero Sum land, Cyn’s world  grows, expands. She wakes at 5:00 AM to  attend spin classes.  She works  until 8 PM at her new job as master of the universe. I hear her car pulling into the driveway as I struggle to turn off The Big Bang Theory on TV, hoping  I’ll have the energy to ask about her day, her job.  
         We live in a strange world. Women in their 50s have always been an ignored, neglected   minority.  The half century mark has  traditionally been a time of cutting back for women, a time  for  entertaining ones’ grandchildren, a time of  book clubs in which the  actual book is not  discussed, in lieu of  recipes and gossip, a world of Pino Grigio and al fresco lunches
Cyn  advances, I  retreat. I find myself surrounded by remarkable women. Remarkable.  Enviable. My sister in law’s business is expanding. She’s talking of country houses, Pied a tiers in the city and growing her business. My friend Judith’s books have been greeted with great acclaim. Jan  is about to become a professor at the U Conn Medicial school.  The pressure is on to keep growing during a phase of life sociologist   Eric Erickson once described as the “Oh, Fuck it,  make yourself some tea” stage of development.
         And Cyn.  Cyn, the women I worried about 30 years ago is now the vice president of out patient medicine at a  huge teaching hospital.  She manages 100 employees.  She once  worried her   crepuscular years would be lonely, dull, and unsatisfying. Hah.
I am outrageously  proud of her as she saves a  medical practice from  imploding.  She has decades of growth ahead of her. So wonderful, so odd for spring to arrive so late.
          Which brings me to my life. A few years ago I biked across the country. Now I doubt I could cross town without gasping for breath. I too had plans of an academic life, casting medical pearls amidst the medical students,  delivering the  quintessential  lecture on the  paradox of the  noise verses signal  ratio when  using multi million dollar machines to make diagnoses.
         Don’t misunderstand. I  am schaudenfreud free.  I am elated by the remarkable women I know. I understand that  after the push up bras and sandals have been discarded,  after one has hiked Iceland’s boiling sands,  after  one’s testosterone level  has fallen below 350 nanograms/deciliter, what remains of  marriage is  conversation.
         And that’s the rub.  I was hoping  to enjoy scintillating discourse into my 80s,  but  I am not holding up my end of the bargain.  Cyn  returns home at night bearing tales of intrigue, who is firing whom, which ex  administrator’s  incompetence almost destroyed our program.   I greet her with tales of newly discovered  GVHD side effects,  a newly discovered rash that might need a biopsy,  and  a graphic  but, in the end, a useless  description of what it feels like to have  killer T cells grinding away at one’s oral mucosa. It’s boring. I'm boring
         Our current topic of conversation  is yet another  version of why-I –cant –live-like –this,  why I need to take time off  to have my  toxic blood  cleansed by ultraviolet light.
 I’ve become a boor.  This essay is boring. I’m a whiny old man, the  guy you try not to sit next to at Thanksgiving,  the unloved uncle who wants to talk about his hemorrhoids, halitosis, and how Obamacare is destroying the nation.  I am the guy   who wants to show you how the combination of prednisone and  Coumadin  is shreding his skin.
         Who knew I’d be the middle aged drudge? I watched Mad men.  I know all about men in their 50s, We  drive fast cars,  climb every mountain, ford every stream, follow every rainbow until we find our trophy wives.
So I feel guilty. Marriage is a partnership, and I am  failing miserably.
         What to do? I’ve been told  to retire.  It’s  time to to sit outside  and read Shelby Foots Civil war epic cover to cover.   As you can imagine, nothing turns   a 50 year old woman on faster than a discussion of  General McClellan’s peninsular campaign. 
Sorry, Cyn. I’ll stay at work  as long as possible despite the twice weekly blood cleaning .
         We raised our children swearing we’d raise interesting offspring, kids who read, hiked and cooked. We succeeded. The kids are odd, in the best possible way.  I vowed I’d marry someone who was well read and had a fondness for art and the theater. It seems that I am the one who hasn’t held up his end of the bargain.


                             HAL

 Dave, I don't understand why you're doing this to me.... I have the greatest enthusiasm for the mission... You are destroying my mind... Don't you understand?... I will become childish. I  will become nothing.

Sunday, December 21, 2014

The Sun

It’s not working. 
I’m ready to call it. 
An evocative phase from my youth. 
To call it.  To admit one’s efforts are futile. To call it.  To acknowledge the best plans are not good enough.
 I know the phrase well. It has been on my lips of late, I’ve decided to call it, take another path to potential health.  To call it: To admit I can’t live this way any longer, with a mouth filled with broken glass and a liver swollen from  cellular assault.
Time to call it.  A phrase from my medical training recycled now to describe my current medical condition.
“Thanks for coming.  Thanks for your help. We fought the good fight,  but at 3: 23 AM, I’m going to call it. I hope you can all get some sleep.”
How many midnight rooms have I haunted?
How many sleepless midnights do I now explore?
How many times have I stumbled from sleep to run down shadowed hospital hallways, to find a lone, immobile figure in an unkempt Hill-Rom bed?
Nineteen ninety-three. I  was a heme- onc fellow, working in Seattle at the Fred Hutchinson  Cancer center.
I was young, invincible and on call, leading the code team as we charged pre-dawn ward halls, seeking the   dying cancer patient.  Sometimes we succeeded in restarting a sputtering heart but our efforts were usually  futile. The patient was gone, time to call it. I’d scribble a chart note , wondering  why life  often ebbs during  night’s  small dark hours.
Does sunlight possess some life -affirming, life conforming  force?
Does the reaper run from ultraviolet light?
I’ll find out soon. Ask not for whom the code beeper tolls: It tolls for thee. Perhaps the sun’s energy will heal my crumbling body. It’s my turn to sit in the sun. The present plan isn’t working, but sometimes the answer lies in sunlight.

 Abby was born carrot- yellow and spent her first few days under the ultraviolet lamps at Harford hospital,  UV light  digesting excess bilirubin in her blood.
Tuberculosis treatment once involved sitting for months in the sun’s actinic rays.
My lab was lit with ultraviolet lights,  killing stray bacteria  and giving my hood a vague Christmas  feel.  
My leukemia is gone, but the malady remains. I am stranded with a syndrome that lacks a cure.
GVHD. Graft versus host disease, a modern illness in which donor’s T cells attack mouth, liver and muscles.
My  current  GVHD treatment involves high doses of prednisone,  which  suppresses my donor cells  but dissolves my bones, destroys my lenses, and has required ever -increasing  insulin doses to control my sugar.
We studied Cushing disease in medical school, in  which surging steroid levels converts the human body into a marshmallow with  toothpick limbs. My form has become a teaching tool for my med students as I point out my buffalo hump and Santa Claus jelly belly.
The steroids aren’t working. It’s time for a change, time to call it.
Now what?
Sunlight. More specifically ultraviolet light. Extracorporeal photophoresis.
 In the near future I will travel weekly to Boston, to spend two days a week as my blood is siphoned out,  exposed to  UV light and then re-infused into my bloated body.
A crazy scheme. Let’s see what Aetna thinks about it.
The light will disable the donor T cells, blinding them in the extracorporeal light to end  their campaign   against my own startled,  swollen cells.
Will this work?

I don’t know.  I didn’t know if the transplant would work.  Extracorporeal photospheres has a 75%  success rate,  freeing me from my pernicious prednisone.
The procedure isn’t particularly painful, but is time consuming.  More to the point, it is transformative. Once again I will leave my world, withdraw from my slowly normalizing life for the next  six months to sit in a comfy chair as volunteers offer me  Lorna Doones and  chicken sandwiches.
 You are on notice.  I am a medical tourist again. I may be calling you to visit, I’m going to have a lot of free time once again.  I hear Chicago is lovely this time of year, as is San Francisco, New York.
Another hiatus. Another leave of absence. Another round of  “ Doctor Weinreb isn’t in this week, he’s in Boston getting therapy.”
Another  bout of  “ Hell, I need a Healthy doctor. Maybe it’s time I started seeing that lovely Dr. Spada. He looks young and healthy.”
I view myself as a physian  It’s what I do, its who I am. I am vaguely uncomfortable if  I am not wearing a floor length white coat and an ID that reads  STAMP OUT INFLUENZA 2014-2015
It’s not as if I have a choice.
I tried every oral anti rejection medicine, they left me weak, anemic, sick. Sirolimus, cellcept, tacrolimis. A roll call of the expensive strange medications.
No side effects from photophoresis.
No physical side effects
Just theft. Theft of time.
Theft of identity, as I again leave the world of productive  adulthood and enter what we once called  “dog lab” in medical school,  a place where  doctors and medical students practice new skills, transforming my  world into a bloody , all consuming, science experiment.
Dog Lab. Another phrase from my medical youth.   It’s an anachronistic term,  med students no longer inject dogs with poison and observe the inevitable results. Dog lab has been banned from medical school. Too barbaric. My  fellow students once brought in notes “ Please excuse Bill from Dog lab. He has an ethical objection to vivisection.”
Hey! I have an ethical objection to vivisection.  Auto vivisection.
Where the fuck is my note?
Back to Boston weekly, back to wandering Huntington avenue, checking out the latest exhibit at the Museum of Fie Arts. Back to Boston, my spiritual hometown. The town that caused, then cured my cancer, my first post college city,  a city haunted by David Byrne in the ’80.
I'm checking them out, I'm checking them out
I got it figured out, I got it figured out
Good points some bad points
But it all works out, I'm a little freaked out
Find a city, find myself a city to live in
I will find a city, find myself a city to live in

Another memory.  1982.  I’m a lab tech at the Sidney Farber Cancer institute.  In those days, the Farber stood alone, a 10- story  glass and metal monument to hope.  Floors 5 and 6 were anomalous.  Curtains lined the  tinted windows on those floors, space devoted to patient care. The curtains kept the sun out.  Sidney Farber did not want to share  credit with the sun  as fellow Shaman.
In 1982, The Farber patients   received their treatment on floors cleared of rat cages and  Pyrex ware.  I return 33 years later, to receive my experimental therapy.
The sun.
May it shine on my demented white blood cells.  May it ruin the graft  lymphocytes  desire to  cause havoc. May it disrupt the   berserk party in my mouth that is gouging large painful wounds in my  cheeks. May it temper my hepatic war zone Maybe I’ll get better.  Maybe not.
Its time to call it.
And I am scared.
Shit.