Happy thanksgiving

Boston,  we have a problem.

 These have been strange, awful, wonderful times.  I think of the Hebrew word “Norah” which means both  terrible and terrific, although I’d translate it as “awesome.”  The closest english translation would be from the Rhode Island " awful  awful" which is a milkshake that's  "Awful good." Been an awful awful year. 

I just can’t believe it’s so

Though it seems strange to say

I’ve never been laid so low

In such a mysterious way

And the course of a lifetime runs

Over  and over again

         I was in Boston this week  and met with  a doctor for the first time in 5 years. Oncologists aren’t physicians.  Shaman, one who heals through magic,  more accurately describes the healers I’ve met over the past few years.  A Physician assesses one’s health status, reviews accepted forms of care, and acts accordingly.  Physicians have road maps; Oncologists are like Felix the Cat:

         Whenever he gets in a fix

         He reaches into his bag of tricks

Less facetiously, an oncologist is a soldier, a warrior assigned to one specific battle with one goal: victory at any cost before the enemy invades.

         I remember my days as an oncologist. Patients would ask about their rashes, diet or the best form of exercise.  “Oh,” I’d say.  “You’d better ask a real doctor about that.”  My duty was clear, win the war against the Hodgkins or the   Ewings, and let others have the luxury of fighting non-lethal opponents.

         I always relished my role as oncologist, because every rare victory was a real cause for celebration. I was a hero if I cured 20% of my patients. I have to do better  when I treat pneumonia. I’ve attended parties held in my honor to celebrate a 20-year olders’  victory over lymphoma, I am rarely invited to parties to celebrate  a newly normal cholesterol.

         If cancer is a war, then I was Colonel  Robert Gould Shaw, the white Bostonian whose  African American troops were massacred at the battle of Fort Wagner.  Despite that fact  the union troops died horribly at the hands of the confederates, Gould is a celebrated hero. Because he tried.

         I mention this because  I thought of my past life as an oncologist when I visited the Farber this week. Ted’s  demeanor had changed, he was a different person than the oncologist I have known  three years. He was a physician, not an oncologist.

         I cannot describe the dread one feels when meeting one’s cancer doctor.  Any given appointment can end with a frown, a sad shrug, and the phrase “ I wish I had better news for you,”  which was what Bob told me  when my disease progressed. To visit an oncologist is  a  leap of faith, an exercise in breath holding and  Xanax popping,  the knowledge that,  in an hour or so, your entire future might have changed.

         This is how I have felt  when I have visited Ted in the past.  I sit in the exam room, holding my breath, waiting to be told, “ the disease is back, there is nothing left to do”  I remember visiting  Boston a few years ago, when Dr Freeman said “ You  have no choice,  your disease is progressing and you need a transplant.” I remember wandering the  MFA grounds in a daze, examining the  Bronze sculptures  and  wondering if  I’d ever visit the Museum of Fine arts again.

         The past is prologue.  I met with Ted this week, and he had transformed  into a physician He asked about my blood pressure,  my  cholesterol,   and whether I should be taking aspirin.   The Shaman  who could have said, at any time,  “The battle is over, sorry,”  was now chatting about getting my diastolic under 90 and my LDL under 100.  I remember my experience giving general medical advice to my  cancer patients. I was usually wrong.  I smiled and told him I’d run his ideas past my cardiologist,  Jim, my doctor. 

         I wandered from the Farber, euphoric. I even walked  to the MFA to take a victory lap among the  sculptures. 

         The news was waiting for me at home.

         I always wondered  about last years’  blood clots. Hematologists love  blood clots,  they are usually caused by some  disruption in the  coagulation/ anti coagulation cascade.  The  cascade is a finely honed balancing act,  bleed too freely and you’ll bleed to death. Clot too freely  and  you’ll end up with  thromboses in the legs, Pulmonary Emboli, and  strokes

So, why did I throw clots from leg to lung?  None of my physicians had done a work up, so I took it upon myself to  run an anticoagulation panel, see where the trouble lay, wondering why none of the  20 or so physicians I worked with had sent out these tests.

         Leiden, with its  canals, museums and open- air markets is a lovely city. Leiden is also home to the University of Leiden,  where, in 1993, scientists discovered a new syndrome,  Leiden V ( Leiden 5).  Briefly, patients so afflicted suffer blood clots because  Protein C, an anti clotting factor, does not bind with Factor V,  a pro clotting factor.

         I have Leiden V. I will always have Leiden V. Add it to my J date profile when Cyn leaves me:

bald fat leukemic, diabetic Tay sachs carrier  who also has Leiden V,  seeks woman  with fewer  genetic defects.

         Clashing, confusing, dizzying emotions.  Sorrow. I thought I was freed from the endless cycle of  confronting chronic disease.  I was tapering my meds, awaiting the day when I’d pop a Flintstone’s chewable  and call it a day.  I will end every day popping Coumadin, until the day I die, and checking my Coumadin level.

 Amazing Grace

how sweet the sound

to save a wretch like me

I once was cured

but now I’m bound

To take Coumadin through eternity

And  then, welling up,  Anger.  The folks in Boston could have tested me for  Leiden BEFORE I developed my clots.   Even without the  disease, I was a set-up for thromboses.  I have a blood cancer. I have chronic Graft versus host disease.  I spent weeks in hospital beds.  Several of my medications provoke  clot.

Shouldn’t  someone have checked Leiden V  BEFORE the clot hit the fan?   It’s not a rare disease,  5% of American Caucasians have the gene, most never know.

         The Farber tests me  regularly for HIV, my likelihood  of developing that viral illness is  about one in  a million.

         What to do?  The  Boston folk  have become  family. Ted answers his phone  24/7, and has been reassuring in times of stress.  I cannot forget  the time Cyn called him in tears. “Tell me,” she sobbed, “Is Steven dying?”

 Ted told her something I’ve never heard an oncologist say.  “I  guarantee 100% he will be  alright. “ Oncologists never  never NEVER issue blanket  guarantees.  And yet, his soothing words, true or not, were the perfect anodyne.

 So why  the fuck didn’t he order a Leiden V when I first contracted  GVHD, knowing I was at risk for  potentially lethal blood clots?

         How can I turn against my Boston family? Melissa and Melissa, my two nurses,  have become sisters, we chat about Melissa’s   young child,  I talk to the other Melissa  about  her  orthopedic issues.  What about Franz? I love the guy, an angel, a vast teddy bear of a man, he who arranges CT scans and Bone marrow biopsies, who magically  finds time for my CT scan on an otherwise  packed day. I walked with him triumphantly through the streets of Boston,  people cheering my fight against what was, 10 years ago, a uniformly fatal disease.
But, But, But.

         I should have been started on couamdin before my clots. I should have known I was Leiden (+) before I collapsed on the Killington ski slope,  a tight metal band wrapped around my chest, a pain I dismissed at Bronchitis but actually was a blood clot breaking off from my  leg and travelling to my lung. Let me say this: No one survives that. Why do I live?

         I  have that odd, horrible feeling one experiences at five or ten or 20  when  one suddenly realizes  ones parents aren’t omnipotent. I placed my life in the hands of the Farber assuming they were also all knowing and all wise. That was clearly a mistake.  They’re no smarter than I.

         I sit in our living room awaiting  24 visitors for Thanksgiving. Our 90 pound turkey  bakes in the  oven. We have had a tough year ,  there has been squabbling among family members.  I try to remember they’re  family, for better or worse.  We have disagreements, moments of unpleasantness, but I vow to move on, get past our petty issues. Thus it is with my Boston family,  people I will know until I die, Hopefully decades from now.

         Happy Thanksgiving! 

Marge, Round two

Marge with cat.

I saw Marge again after 37 years.

I saw her first in 1977.  I was an 18- year- old virgin,  attending a poetry reading alone at Ithaca College.  Her poems were mostly about sex: exotic, spontaneous sex.

How could you make love to him in an elevator

you say. But it was a freight elevator

I say, it went up very slowly, you could lock

it between floors. Besides that was a decade

ago, I was more adventurist then. Oh, you say,

so you wouldn't fuck me in an elevator, I see.

I like my comfort better now, I say, but you

are my only comfort. Have you an elevator in mind?

The poem that lingered  from that era  was Vol Du Nuit, Night Flight.

Dreams of a twenty-year-old are salty water

and the residual stickiness of berry jam

but they have the power to paralyze

a swimmer out beyond her depth and strength.

Memory’s a minefield.

“One must change a great deal between 18 and 20,” I thought.  I had no disabling memories yet, no entanglements, no  obsessive, half filled diaries… yet.  To be 20 must be to be fully evolved, to have a history of elevator-related memories.

Marge Piercy stood there, in the Ben Light gym, describing a future, our future, in which obsessive memory could disable even the most stable mind.  She stood defiantly behind the podium,  dressed in black, long straight hair flowing  to mid back.  She was exotic as a human could be, and yet she possessed an odd  familiarity.  She was my eccentric Jewish aunt, the one who grows her own vegetables, has a  rambling compost heap,  and sleeps with oddly named cats who become the  subject of her poetry.

You were still a kid in high school

Water under the bridge

Long time ago

You’ve been around the world since

You did alright

You filled your dance card, saw the show

Interesting times

Water under the bridge

Water under the bridge and dynamite it behind you

Memory is a mine field, after all.

That last line does not appear in Didion’s Democracy, but it should,  both women are obsessed with memory’s   disorienting  and destructive power.

I grew into Marge Piercy throughout college.   I could never read her novels, they explode with anger and resentment,  they pulse with misogyny and men put on earth to destroy the world of women.  Yet I always found odd tranquility in her poetry.

To fall in love so late is dangerous.

 Below,


lights are winking out. Cars crawl into driveways 
and fade into the snow. Planes make me think 
of dying suddenly, and loving of dying 
slowly, the heat loss of failure and betrayed
 trust. Yet I cast myself on you, closing
 my eyes as I leap and then opening them wide
 as I land. Love is plunging into darkness toward 
a place that may exist.

These words proved prophetic. Falling in love proved to be the penultimate  leap of faith ( Religion being the ultimate leap of faith)

We saw Marge last night, at a  poetry reading. She no longer strolls, she limps on  arthritic legs  She  still dresses  in black, still peppers her  responses with “fuck”

Cue Jackson Browne, I guess

 Nothing survives

But the way we live our lives.

She doesn’t write as much of sex these days, the spontaneous dangerous affections of our, of her youth. The topic evidently doesn’t interest either  of us any more.  Now she writes of Judaism but, more importantly, she sketches a road map,  a plan to survive one’s remaining years  with dignity and joy.

Live as if you liked yourself, and it may happen: reach out, keep reaching out, keep bringing in. This is how we are going to live for a long time: not always, for every gardener knows that after the digging, after the planting, after the long season of tending and growth, the harvest comes.

At evening’s end, she recited a new poem.  The blessing of the Day

But the discipline of blessings is to taste

each moment, the bitter, the sour, the sweet

and the salty, and be glad for what does not

hurt. The art is in compressing attention

to each little and big blossom of the tree

of life, to let the tongue sing each fruit,

its savor, its aroma and its use.

 I am glad to be freed of constant pain. I want to live my remaining years  reciting  that line   Marge Shared the other night

Be glad for what does not hurt.

 I am leaving two years of pain,  pain so intense that  I wished I were dead. The pain is slowly clearing, and I am honestly grateful for my  ever increasing pain free moments. What is aging but the acceptance of pain?  My medical practice has been aided by my experiencing a 90 year old body blind and weak, and riddled with pain.  I understand know why they beg me to kill them.

You knew me in 1977, you still know me in 2013. Thanks, Marge.

As I lay dying

Why do we live for 20 years, just to die for the 50 more ahead?                  -

--David Bowie

Why do we live for 50 years, Just to die for the 20 more ahead?

--Steven Weinreb

The Scream

looks similar, no?

            As I lay dying, last June, on our bedroom  sulk couch, ( every married couple’s bedroom needs a sulk couch. That or twin beds. ) watching  The Big Bang Theory reruns,  I realized I should  reread  Falkner’s opus. Turns out, I should have been reading the New Testament. Luke 23, to be exact.

            Reading As I lay dying seemed appropriate.   As a Cornell Freshman , I read Pnin, Nabokov’s  pale parody of academic life at a University  neither Ivy league nor Cow College. . I read A Movable Feast, Hemmingway’s Parisian memoirs, in the city of lights.  I tried again to read Ulysses while biking across Ireland, until  threatened by bludgeoning  from my bike mates.  

            Which brings us to  Falkner’s Gothic Southern novel. As I Lay Dying is the literary equivalent of  Munch’s The Scream, making a similar point : We live isolated in a surreal, garish world of misery  only to die alone, under the indifference of Heaven. I don’t think I’m revealing much by describing the novels’ final scene:  The recently widowed father takes money intended for his daughter’s abortion  to buy a set of false teeth  so  he can date again. Really

            The title is enigmatic. Who is dying? I assumed Faulkner was giving voice to Addie Burden, the woman who dies early on and whose rotting corpse  is conveyed across the  south,  fulfilling her wish to be buried in Jefferson.  Really. After all, she narrates one of the chapters, death hasn’t slowed her  ability to kibitz.

            On re-reading, I realized the “I” refers to us all, we all lie dying, sometimes on a red muslin couch.  Ask not for whom they televise The Big Bang Theory in the middle of the day when we should be working.  They televise it for thee. 

            I find odd comfort in this thought. I’ve been feeling singled out lately.  True, I am healing.  I am working again, but my recent life story sounds as improbable and gothic as, well, as a Faulkner novel. Have I ever met a patient who received a lethal cancer diagnosis,  failed conventional chemotherapy, experienced liver failure , went blind,  lost the use of his right leg,  and then spent 3 weeks in a hospital as  doctors struggled to treat and re-inflate an abscessed  lung?  Really.

           My self-pity is woefully misplaced, as self- pity usually is.  I have patients with stories worse than mine.  But  what binds all us pre- geezers  together  is the reality  that we all die a little when we turn 50.  We die in myriad,  sad ways. Our parents die, taking a little bit of us with them. By the start of our sixth decade,    we’ve all sat in hospice rooms with their soothing quilts. We’ve held vigils in aseptic  ICUs,  whose  cold,  electronic  lights twinkle like a sky filled with dying stars  silently going nova.

            We turn fifty and our marriages die, shattering  our illusion that we were blessed with the perfect partner,  that we were unique, we had connected with another human being on a profound level unreached since  Willie S  wrote of the  Capulets  and Montagues.  Our children leave home, taking small hunks of us with them.  And then, we start getting sick.  We all don’t  contract cancer, but rest assured,  we each have a destroying angel picked out for us, and he is coming up the driveway as we speak. He makes his appearance at the same time you get your first AARP letter.

            We were designed to die at fifty . Half  a century  gave our ancestors time to  raise kids, and  then have a little  time  left to reminisce in front of the cave over a simpler time before the invention of the wheel and how fire hasn’t really made anyone  happier, only busier.

            Dying is universal. Resignation in the face of death is not.  I know many 55 year olders, mostly men, who lie on their sulk couches, watching  football and waiting for  the Reaper to make their demise official.  Some  refuse to accept the  dying of the light and party on, with varying degrees of success.  Look at Madonna or Mick Jagger. Look at Jerry brown, California’s bald  solemn Governor  who smoked grass with girlfriend  Linda Ronstadt  40 years ago. To paraphrase Edmund Kean,  Dying is easy, reincarnation is hard.

         My own rebirth was a messy, exhausting process. I  had been a negligent  father, husband, and  friend when I was sick. Once I regained some of my strength, I embarked on a frantic  mission to prove I was whole again. We biked across the finger lakes, we spent a week at the  Mohunk resort in NY. We biked 50 miles to Northampton, to dine with Harley  and Serita, who had been so supportive when I was sick.  I worried that if every day  had become a  sacred gift,  spending an afternoon watching  The Big Bang Theory reruns bordered on the blasphemous.  Any day I didn’t witness a sunset or read a poem was a day wasted.

         My zeal was misguided. To quote Socrates: Beware the  bareness of a busy life.

.  I sought advice from someone who  actually had been resurrected. What did Jesus do when he  returned from his burial cave? Did he throw an extravagant  party?  Did He  catch  the first mule to Jerusalem to appear  at some  Mid Eastern  nightspot?  I’m sure they would have comped his drinks.          What did He do  when he returned to Earth?  First, he contacts Mary Magdaline, and then he has  brunch with friends. Really. Luke, back me up:

 he asked them, “Do you have anything here to eat?” They gave him a piece of broiled fish, and he took it and ate it in their presence.

I feel this is proof  Jesus was a NJB.  Upon regaining consciousness, He  immediately contacts  his girlfriend to reassure her that he  wasn’t hanging out with some  Shiksa, and then  finds friends to share brunch.    

     . The message  in Luke is clear: When you come back to life, keep things simple,  have a nice piece of fish, don’t  celebrate by  taking your son to a lovely  but exhausting  feast at an Williamsburg  Asian fusion restaurant to prove you’re an involved, loving and generous dad.  Resurrection is about making reconnections, not about  feats of  endurance and dramatic partying.

         I miss Nora Ephron. She died twice, once recently of Leukemia, making us  blood cancer buddies, She chronicled her first death in Heartburn. She  first  died  at 38 when her husband left her for another woman. She marked her rebirth not  through  a series of  extravagant affairs but by longing for her routine life:

         I love the every everydayness of  marriage, I love finding out what’s for dinner and  do we owe the Richardsons.

Just like Jesus, she longs for  a little nosh and quiet get- togethers with friends.

         We live, we die, some of us are lucky to be reborn, more or less as we were,
 but with a  quiet gratitude that will  transform the next  phase of our lives. After my brush with death, I  first resolved to  suck the life blood out of every day.  Now, I think I’ll call my brothers and sisters- in- law to see what they’re up to on this lovely, cool New England day.

Journal of the post plague year

I toss awake.  This is not a night for sleeping, it’s a night to rise early, pace the house, glad and eager to escape the   dream cycle that grows more real, oppressive, and disturbing through each sleeping hour.

             I’m at home. I am furious.  My I phone has been corrupted by spam. The   spammers have devised a way to present their unwanted messages as new app icons, which appear on my I phone screen.   A new app appears, offering me a chance to stay at a tropical paradise.  A sad reflection in my life: I know how to remove unwanted apps in my sleep: I hold the    I phone button down until the apps start to dance, then I click the little black X that appears next to the double phantom application Icon.

            Cyn calls from the next room. She has news   “ You have a new cancer” she tells me

            “What?”  I’ve passed the two year mark, I m free…. Right?

             She shakes her head. “The Farber called. I knew you’d be too upset to talk with them. You have a new cancer, an incurable low grade lymphoma this time.”

            I wake in a sweat. Cyn sleeps quietly besides me.  It’s 4:30. AM.  I’ve been trying to sleep but can’t.  I always have insomnia when I reduce my prednisone dose.  I now take four mg of prednisone daily, My body responds apparently, by issuing a torment of pre- dawn cortisol, firing a pre dawn flight or flight response that soaks into my REM. 

A Gordon light foot lyric springs to mind

Searching through the fragments of my dream shattered sleep

1975 never speaks so loud   as it does through half forgotten song lyrics.

            I know the dream’s meaning.  I recently ran into X, a young woman fighting cancer. Her prognosis isn’t as hopeful as mine.  We spoke and the sad, unsaid conversation was, “ You lucky bastard .You beat the big C” I felt guilty then, feel guilty now.  Survivor’s guilt, to be sure, based on the fact I may live to see my grandchildren, but   X may not see her young children reach adulthood.

            It isn’t fair. It’s not fair.  In a world of a just deity, the old farts with grown kids die, the young parents live. We all have the same destiny, we all meet the hooded guy schlepping the scythe.  We live so  the young people in our lives can lie snug and safe and secure in their beds, knowing somebody loves them, they’ll be there to play catch, make dinner and speak soothingly when the car comes home with a mangled fender.

            I atone for my ruddy good health through my dreams. That’s why I sit here at 4:56 AM, unable to sleep.  I’m back at work these days, putting in eight hour shifts   I’ve devised a work plan:  Don’t work more than 8 hires a day, don’t see more than two patients an hour, take an extra day off a week, and avoid carbs during the day. Eating bread triggers my adrenals to produce cortisol, which provokes my pancreas to produce insulin, which causes my sugar to drop. That’s when the weak crankiness hits.

            Alas, I haven’t devised a work- around for the four AM dreams.   Yet.