Da

Da

I am sick. Again.

Shout it from the rafters,  cry it  ‘cross the divide of time and space. I’m sick, sick as a dog.

Dogs….

I flash on Auden:

Stop all the clocks, cut off the telephone,

Prevent the dog from barking with a juicy bone,

Silence the pianos and with muffled drum

Bring out the coffin, let the mourners come.

Let aeroplanes circle in  fog white and thick;

Scribbling on the sky the message He Is sick, he is sick, he is sick

Terribly sick, crazily sick, deliriously sick.

Symptoms?  Of course I have symptoms!  What are you implying?

 I’ m coughing up all this mucous, I’m a little short of breath. My muscles ache.

I’ve become Richard Feder.

I’ve gained weight, my face broke out, I’m nauseous, I’m constipated, my feet swelled, my gums are bleeding, my sinuses are clogged, I got heartburn, I’m cranky and I have gas. What should I do?”

Did I mention the clamminess?

No fever, not short of breath, but with every breath, I emit a short musical note, that Sam, my pulmonary doctor, would  describe as a  little pitchy B sharp. 

I have a cold?   And for this pedestrian diagnosis  I gain no sympathy, just a  brief roll of the  eye, a sad shake of the head?

         You tell me I suffer from  a terminal case of lack of perspective.  I struggled through the valley of the shadow of death. Now that I dabble my toes in the warm waters of the stream of sullen misery, my symptoms seem…. Petty?

         And that’s the paradox.  Sick is sick,  regardless of whether a harbinger of lethal Strep Viuridans or a pesky rhinovirus.

 I’ve always been a cranky,whiny  patient.  A little  leukemia didn’t  change my basic nature. It just gave me a past, a context, a prisim through which I must judge all further illness.

          I woke last Tuesday achy and nauseous from  swallowed phlegm, I staggered to the bathroom, seeking succor. What sovereign medicines to sooth a fractured sinus system?

Abandoned Big Boy medicines spill from my medicine cabinet. How about a little zofran for the nausea? Nausea is nausea, after all, whether from  phlegm or chemotherapy.

         What about antibiotics? I spent the last month  explaining  to my patients they don’t need antibiotics for their cold symptoms. Yet, here I am in the bathroom, examining bottles of Gorillimycin as if they were rare vintages that could cleanse my body of its viral load .

I feel a little better, and visit Jeff for my yearly physical,  embarrassed I haven’t seen him in  three years . Three years have elapsed since I deigned visit a mere GP for  the  signs and symptoms of  middle age.  We talk of my  weight, up 16 pounds in three months. He listens to my lungs and orders an inhaler and a PSA that I refused when the reaper dwelled at my door.  Visiting Jeff always bothers me: Even if it leaves me terrified, I  don’t resent  visiting the cancer doctors, I  probably didn’t give myself cancer. I resent visiting a GP,  because I made myself overweight,   and therefore diabetic,hypertensive and  hyper lipidemic.

         We speak of my cold symptoms, and I’d rather talk of my leukemia, my badge of honor,  proof  I am bold, strong and proud. I don’t want to linger on my sinus symptoms, any pathetic wretch can catch cold. Any pathetic fool can cure him or herself of a viral illness, just  drink tea, complain to loved ones and  wait it out.

         I leave Jeff’s office thinking of Da, a  1970s Leonard Hughs play. Da revolves around a grown son whose father embarrasses him. The son returns to his ancestral home and finds his fathers’ ghost, who departs gaily  with the son who, in the end, realizes he can’t escape his past and must learn to live with bittersweet memories.

         I realize the Leukemia is my ghost.  It will always be a part of me, even after I move on to  silly, simple illness, its damp ache  will haunt my deepest fears and nightmares forever.

         I  turn the idea over in my head.  We are a  product of our pasts, and now I  am the proud possessor of a cocktail- party- stopping tale of valor and fear. And draining sinuses.        

         I wake in the night,  troubled. The leukemia reminds me of Da, but it dawns on me in the pre-dawn hour that  Da reminds me more of Da.

         This isn’t a blog about my childhood. I expect my proud papa is out there, reading this, honored to be a part of his  adult child’s life. I am grateful for the way I was raised, in an intellectual, affectionate household. I also know my parents’ words were sometimes unkind, and I carry their jibes with me, and forever  will.

         How often have I hurt my children with an ill-considered word?  I hope they’ve forgiven me, or, at very least, forgotten when I was too tired or ill to carefully consider my words.  

         Can’t change the past. Without the past, I’d be some whiny guy with a cold.  With all I’ve been through, I’m a whiny guy. With a cold. Who was really, really sick once.

         In the past.

Role Models

Off to make a house call! Jeff, pay attention!

A first–year medical student has entered our lives, again  transforming us into new parents.

          After 4 years at Brown and one year living just off Manhattan’s mean streets,  son Jeff has returned home.  U Conn Medical School is five miles distant and he has reclaimed his ancestral room.

.   Once again we hear the patter of little panicked feet upon the stairs in the night . He’s scared and needs comfort, as he did when he first crawled our dark hallways in 1991. Nowadays, we reassure him  the trigeminal nerve has both motor and sensory function, and he returns to bed, soothed, ready to face tomorrow’s  anatomy  test. 

         Jeff’s return home echoes his last sojourn here  during Pere Bush’s tenure.  Cyn and I were determined to provide a soothing, stable environment  in which young children would thrive. We fiercely struggled to demonstrate that, in our upper middle class cocoon,  traditional  role models were irrelevant  and  that we could live a non-judgmental, compassionate lifestyle.  Easier said than done.

         We wanted to show  Jeff, Dan and Abby  that  we had moved beyond traditional heteronormative  roles and that  our life style was not  a deadly, crushing  distraction as we waited our first ominous blood tests.

             “Gee Cyn, I had a great day at work! Earning a paycheck  is both rewarding and  imbues one with a sense of self worth.”

            “ Steven, dinner is delicious.! I guess the  stereotype  that men can’t cook isn’t true.”

            We’d  measure  our words  carefully. We  understood the possibility our hostility, boredom or anger might transfer to our children who ignore every plea to clean their rooms, but pick up on the fact that we think X’s parenting skills  left much to be desired. We learned early on: criticize neighbors at your own peril.

            “Hey mom,  X wanted to tell you that  she is an excellent mother, and at least she doesn’t entrust her children’s safety  to a series of  immature, moody  Norwegian Au Pairs.”  

And then there was the whole potty mouth issue:

            “ Jeff was at our house yesterday, and said “ who gives a fuckety fuck. Who talks like that?”

            We tried our best.  We apparently didn’t protect Dan from the corrosive but hysterical affects  of sarcasm:

https://docs.google.com/file/d/0B0a3zabJzWdYcEtvbHkzU0dWLU0/edit

         We were flattered when Jeff asked to live with us this year, forgoing  the  U Conn  college town that sits across the road from the hospital.  We were touched  he’d rather live with two aging, cranky, middle aged Jews than 120 tightly wound, high strung classmates who would  commit unspeakable acts to win the residency of their choice.

         Jeff has always been competitive.  We recall a time, six years ago, when Jeff traveled to Providence  Rhode Island to sit in with the Brown University Jazz Band teacher.  As Cyn and I know too well, med school is a toxic combination of  overwork,  sleep deprivation, and  rote memory.  Jeff’s experience is different because  students are now expected to volunteer for left wing  projects,  teaching sex education  to inner city schools and  participating in Harford’s gun buy back program.  U Conn  Med exists in a culture that now expects medical students to give back to the society that allowed them to  attend med school in the first place.

         But I didn’t want to discuss the miracle that is Jeff. I wanted to write about behavior modeling.

           I don’t want Jeff to regard doctors as a bunch of bitter, burned out, cynical  paper jockeys  who spend most of the day writing notes  liberating patients from jury duty.  I catch myself when returning home late at night before I  deliver a tirade about the hospital’s mindless and random bureaucracy   that  crushes our goodness and compassion into a fine, bitter paste.  I can’t say a bad thing about any of our patients ( not that I would) 

            At least, once again,  I can  say “ pass the fuckety fuck fuck mustard.” And this from an ex English major.

         I want Jeff to know that even in this era of  pay for service and overpriced meds,  we enjoy our jobs. As Colleague J. sometimes says “ All I have to do to feel better is see the next patient.” We honestly feel we were put on earth to be  physicians, and I think we’d all feel vague dissatisfaction if we played any other roles.

         We don’t want to be mere pill pushers, and I don’t want Jeff to become one either. The world is filled with awful, uncaring  arrogant doctors.

  To quote  Say Anything

D.C.: Lloyd, why do you have to be like this?

Lloyd Dobler: 'Cause I'm a guy. I have pride.

Corey Flood: You're not a guy.

Lloyd Dobler: I am.

Corey Flood: No. The world is full of guys. Be a man. Don't be a guy.

That’s exactly right. I have to  role model that humility, that sensitivity. 

 I want him to know that  being a physician is an honor, a gift,  and to do it well is something  almost no one does. You just cant say that. It sounds … well,. It makes one sound like a doctor.

         This might be why I  need to  tell Jeff about my house calls.             I enjoy making home visits. Patients are  more comfortable in their own homes. We sit and sip coffee in the  kitchen. I do what all  good docs do, ask seemingly innocuous questions that  help me make diagnoses ( So, is this the first year you didn’t  shovel snow?”   I want Jeff to know  that our pateints’ time is precious too, and sometimes you have to  grab the black bag and go visit.

Before you get all misty about  doctors no longer making home visits, remember that  home visits were once used to bluff patients into translating a physician’s presumed compassion with his competence.  I remember  Lewis Thomas’s The  Youngest Science

            I am quite sure my father wanted me to be a doctor, and that must have been one of the reasons for taking me along on his visits. He was not always being  honest. he said. One of his first patients was a male complaining of grossly bloody urine. My father found himself  without a diagnosis. To buy time, he gave the patient a bottle of Blaud’s pills, a popular iron remedy for anemia, and told him to come back to the office in four days. The patient returned triumphantly  holding a bottle of clear urine.

I once rounded with the kids at the hospital, the patients ooing and awing at my young charges.  I doubt  Dan and  Abby will pursue medicine, but I am glad Jeff is planning to be a physician, a surgeon. I’m not sure who role modeled the surgical persona for Jeff.  But there he is, a little cocky, a little arrogant, convinced of his own skills and  knowledge.  That’s not me.  Perhaps it’s Cyn. It’s certainly her dad, grandpa mark, who was  a litigator but would have been an excellent surgeon It doesn’t matter, really, Jeff’s on his way. If only we had role modeled the need to do one’s laundry….

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.