Michele’s Hat

I toss awake in the depths of the night, alone in an unfamiliar bed. I stumble to the window and contemplate the landscape from 25 stories.

            The streets are deserted.  A snowstorm swirls outside. The buildings, awash in artificial light, glow softly.

            Ir Bageshem. A Naomi Shemer song lyric comes to mind.

            City in the rain. Jerusalem buildings are constructed of limestone, and emit a soft, pink glow when the rainy reason begins. The stone emits the same glow that now wraps Bean town.

            I have been trying to heal.  I am in Boston to undergo another round of photophoresis, the voodoo process that fools my T cells into believing they are at home,  not in an alien host that needs to be destroyed.  I am the host here.  No guest should ever treat their host this way.

            Cancer. The death of a thousand duck bites.  “What’s wrong?” friends ask.

            “You’re getting better.  You have more energy. Cheer up,” they say, “Life is worth living.”

            Perhaps.  But refresh my memory. Why?

            I think of  Ethan Hawke from  Reality bites

“There's no point to any of this. It's all just a  random lottery of meaningless tragedy and a series of near escapes. So I take pleasure in the details. A Quarter-Pounder with cheese, those are good, the sky about ten minutes before it starts to rain, the moment where your laughter become a cackle... and I, I sit back and I smoke my Camel Straights and I ride my own melt.”

And then there’s Woody Allen:

Why is life worth living? It's a very good question….. Those incredible Apples and Pears by Cezanne...the crabs at Sam Wo's... Tracy's face...

I wince at the thought.  The reason to live : food and pedophilia.

I live because others want me to live.  My death would bring unhappiness to many…well, to several, anyway. More to the point, I’ve come to view suicide as the ultimately selfish act. Taking one’s life leaves a hole in the lives of so many others. 

             I haven’t thought of self-destruction in a while.  I take this to be a good sign.  Still, I have a long way to go. Let’s go back  to Woody Allen.  I don’t care about his icky past.  The man gave us Annie Hall.

            “Why is life worth living? It's a very good question. There are certain things I guess that make it worthwhile. For me, I would say... the 2nd movement of the Jupiter Symphony... and Louis Armstrong’s recording of Potato Head Blues. Swedish movies, naturally. Sentimental Education by Flaubert Marlon Brando, Frank Sinatra.”

            Frank Sinatra? Wasn’t he married to Mia Farrow, Woody’s girlfriend who adopted Soon-Yi, Woody’s current wife?

            Woody’s monologue credits art as a reason to live.  This brings me to the point of this piece: The healing power of art.

            I  have a membership to the Boston Museum of Fine Arts, about a quarter mile from the Farber.  After a long day of therapy, I stroll to the MFA and wander  the galleries.

             A famous Childe Hassam painting hangs there.  Children feed  pigeons  off the Commons. It’s winter in the late 19^th century  and the   Boston sky holds the same pink light  that shines  softly at three AM  three miles from the site of that famous paining.

            The painting is soothing, familiar.  The same snow, the same light. The same Commons, the children walk down Boylston street, then clogged with trolleys before the green line was built to carry commuters  beneath the Commons.

             Art can be comforting. I find  familiar details in art that echo in  our own lives.  I  cringe, thinking of  the late Robin Williams  from  Dead Poet’s society.

            “We read and write poetry because we are members of the human race. And the human race is filled with passion poetry, beauty, romance, love, these are what we stay alive for. You are here , the powerful play goes on and you may contribute a verse. What will your verse be?”

This is my verse.  Michele’s verse is her medical skill, of course, but also, her art.

We were residents at  Chicago’s Michael Reese Hospital.  Another time, another city.  She is a physician and a quilter.  She and her family  have given me untold  comfort and support  during these queasy,  neoplastic times. A few years ago, she  made me a felt ski cap, a  piebald Jesters’ hat to wear  when the chemo  further attenuated my already   thinning hair.

            It  always brought me joy.   It was a symbol:  Even  in the bleakest moments,  life  holds  color, comfort and love.  It served as a  handy link to the un cancered world.  When I felt like talking about the Big C and Me, I could tell  curious strangers that this was my chemo cap, and that would  lead to long conversations about the precarious nature of life.  Last month, we were attending a Broadway play, and a theater worker announced, over a bullhorn “ All of you may enter,   except for that guy with the red ,yellow and blue hat. I want to talk to him.” This sort of stuff happened daily when I wore the hat. I must say, I didn’t mind the attention.

            The hat  is art in its most basic form: Beautiful.  Comforting. familiar.

            And now, it’s gone,  taken from  a  restaurant coat rack.

            I was heartbroken.

            I have tried to buy a similar hat. They don’t exist.  I shopped for one in Boson where  all  hats must bear   GO BOSOX or HARVARD.

               Michele is working  on a new cap. I will wear it  daily, I will sleep with  it, my  Linus blanket.  We have second chances in life, whether through haberdashery or Chemotherapy.

            I stare out the window.  CNN is on. The snowstorm drives the  Boston News cycle. The governor has declared a snowpocalypse.  What if they close the blood bank, where I undergo my treatments?  I’ll stay  here another day for therapy. There will be chaos , confusion and concern, but, for  now, all that exists is a city of  snow.

Retuning to Woody Allen:

  “I like the rain. It washes memories off the sidewalk of life.”

I like the snow,  it’s a window to the past, to art, to other cities.   Best of all,  it will give me opportunities to wear my new hat.  

I think of the  Naomi Shemer song:

ir bageshem sachah lanu kachah -
hachaim yafim kedai lachem lichyot!

--A city in the rain speaks to us. Life is beautiful, it’s worthwhile to live.

         Shit. I haven’t had an optimistic thought in months. The treatment  must be working.  Maybe it’s the hat. Thanks, Michele.

Let there Be light

Let there be light.

            Week three of photophoresis starts tomorrow.  I drive to Boston, sit in the comfy chair, take a deep breath and suspend my power of disbelieve for three hours.  No one knows how this procedure works, but the data are encouraging : 80% of those thus treated  markedly  reduce their  prednisone dose.   It must work: Aetna is willing to pay $4000 a treatment.  I am eager to reduce my steroid dose as I battle  skyrocketing blood sugars and dissolving bones. The process doesn’t kill or directly affect all my T cells causing havoc. This suggests the   treated T cells secrete cytokines that instruct the other rogue white cells to lay off the GVHD.

            My willingness to undergo this uncomfortable procedure requires a leap of faith, the acceptance that I will improve, undergoing a procedure that requires  two days a week and leaves my  swollen, sore arms with  livid marks where the IV is placed.

            Light therapy has me thinking of faith, and faith and light reminds of  religion.

             And let there be light. And God saw the light and saw it was good. And then Aetna contested the charges because, after all, there exists three constants in the universe:  Death, Taxes and insurance refusal notices.

            Atheists amuse me.  They are certain of one fact: There is no God. They are people of pure science and can’t believe anything that can’t be explained through logic and observation.   I suspect it’s not God they reject, they reject the notion of    a benign, bearded Santa Claus on high, lurking amidst the clouds.  They don’t believe in the kindergartener’s version of  the Deity,  an all knowing being  who records every detail of our lives,  knows who has been naughty and who nice, who makes sure the  loss of a sparrow feather doesn’t go  unnoticed , unplanned of unmourned.

            They believe in science.  As do I . Up to a point.

            What they don’t realize is that the ANSWER TO EVERYTHING as Steve Hawkins would phrase it,  is so bizarre and incomprehensible that   belief in a benign, throned  deity  would be easier to accept. Or understand.

            We scientists believe the Big Bang, the sudden appearance  of a  universe from an inconceivably dense  source of proto matter, through fluctuations  in the quantum foam.  According to the Big Bang Theory,  something ness  evolves from nothingness  and the suddenly -formed  universe then  flings itself into space -time.  Fourteen billion years later, some guy battling leukemia writes a blog.  And so it goes.

            Here’s the problem.  It couldn’t have occurred like that because of something Einstein called the cosmological   constant.  Einstein realized he had calculated the  existence of the Hand of God but was too much of  scientist to call it the God constant.    He threw in a constant he couldn’t explain but  was needed to make his equations balance.  He had faith that someday someone would understand  the spooky constant.

            Here’s the paradox.  If the   universe flies apart too quickly,  its components disperse too fast, not allowing  the galaxies to coalesce,  not permitting the  formations of  suns and subsequently of  molecules and the heavier elements. 

            If the  universe flies apart too slowly, the  hydrogen atoms will  close back in on themselves, and the universe will collapse long before   the galaxies can form. The Cosmologic constant ensures the universe will evolve as it has, resulting in our world.  

            Who calculated the cosmological constant?  Perhaps universes form every billion years or so, and finally, on the billionth  try,  blind  luck  generated the “correct” constant .

            More likely, Dark matter formed  first.  Dark matter has never been seen  directly.   Its existence is suggested by the  movement of the  galaxies as they pass each other

http://www.damninteresting.com/the-dark-tale-of-colliding-superclusters/

 and by the way  the  galaxies keep spinning .

             Most likely , dark mater formed first, exploded,  and pulled the light matter behind it. When we look into the night sky, we can see only 4% of the universe. We see only the light matter , in the way  we only see the snow  covering a  snow-draped  mountain.  We only see surfaces, not the supporting dark matter scaffold.  Without Dark matter , the universe would collapse, as  the snow layer  would  after the mountain  disappeared.

             This explanation is far more bizarre than any Bible  story. Most of the universe is hidden from us.  But there’s more. Einstein    described entanglement, the conservation of data,   that  seems to ignore the laws of physics.  When two  particles are created, they are entangled, so that if one  changes its rotation, the other particle instantly   changes its rotation as well,   regardless  of its location  in the universe.  The change is instantaneous,  outpacing the speed of light

              Data is always preserved, a force exists that  “knows” that as one particle falls into a black hole, its twin remains to record the event.   This is the basis of Hawking radiation, the universal and instantaneous conservation of data.

            In the beginning was darkness, and god said let there be light. And the light  became divided from the darkness.

Add  “Matter” to Light and Dark and we have just derived   the  “scientific” proposed creation of the universe.  The conservation of data suggests a system in which nothing is forgotten.   Sounds like a cosmic consciousness. This force is not some bearded guy but a force, nonetheless  beyond our understanding,

            The Bible’s  first letter is Bet,  in the word Bresheet, in the beginning.

            Why is Bet the first letter? Because it implies the existence of  Aleph,  the first  letter in the Hebrew Alphabet. The aleph represents the dark universe, the  space time that  existed before  light matter.    Within the Aleph universe, the cosmologic constant was devised.  By whom or how is anyone’s guess.

             Entanglement sounds bizarre, impossible, otherworldly. It can be both predicted and has been observed.  Its implications are staggering.  In another scenario, the two entangled particles are bound close together in space time , suggesting that three dimensional space is an illusion.   The actually universe is somewhere else, where all particles directly and immediately  interact,  making our perceived   universe a  mere  hologram, a projection from a  place else where  all particles are linked.  I   can more readily believe that throne Guy story  than  the possibly that our entire world is an illusion, a matrix.

            What’s the point?  The point is that accepting water into wine,  Mohammed’s moving mountains,  Moses’  red sea antics, or Entanglement, all require some article of faith in events that can’t be explained.            

            Undergoing photopohoresis requires faith. Without it, I would  accept the fact  I will never be better, my mouth will throb  until, the day I die,  and that I will take  prednisone  until  I am asked to play the body double in the re-remake of  “The Blob”   

            Even  the atheist needs faith.  And the good oncologist said, “let there be light, 1.5 joules/cell .”

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.

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.

The Questionnaire

Sure, I would not mind saving 500 dollars. Dan wants to join the Cornell Ski team.   Abby will need help this winter as she teaches 4 year olds to ski and Jeff… It’s surprising how many incidentals one generates on one’s meteoric ride to Master of the universe/ second year medical student. Life goes on, I am still parent of three single students who need funding, despite my daily, sundry struggles.

            It’s easy, too. The money saving, not the master of the universe thing.   I need to complete the oxymoronically named “Wellness form.” My GVHD tide is slowly receding, yet again, fading slowing under the renewed effects of Rapimmune and prednisone. I have stopped eyeing the room for potential devices of self-extinction.  I feel I am safe around sharp objects, shards of glass, beakers of Hemlock, and my sister- in- law.(1)

            To save money, I need to answer health questions and undergo a physical. In the past few years, I  have viewed maintenance health care as a   waste of time. I want to scrawl, “I have cancer!  Every day is an unexpected surprise” across every  form requesting a preventative health care check up.   I derive perverse pride from my disease.  I think of Men in Black:

“You're no longer part of the system. You are above the System. Over it. Beyond it. We're them. We're they. We are….” People fighting Cancer. 

To paraphrase Gold hat, from the treasure of the Sierra Madres, 

“Health exam? We don’t need any stinking health exams, asshole”

Preventive care?   That ship sailed 7 years ago, now I am  well into besiegement mode. My medical situation resembles the Israeli zealots barricaded on Masada, awaiting   their doom at the hands of the Romans who had surrounded their desert redoubt. Telling me to take cholesterol medication would be like telling the zealots  to wear sunblock, because nothing is worse than being tortured by the Romans except being tortured by the Romans while suffering from a bad sunburn.

            I  am slowly being  reintroduced  to  preventative medicine. Much to my chagrin,  Ted  asks about my cholesterol and blood pressure, whereas all I want to do  is shout ,  “LDL? Fuck that, tell me how to  overcome  this crippling steroid neuropathy, my mouth pain,  my blah blah blah blah.”

             I go to the wellness website. They ask a series of questions about my health,   habits and lifestyle.  I develop a headache   from  excessive eye rolling.

Exercise? They want to know  about exercise? How many calories does one burn  searching for gauze to staunch the  flow of blood from a newly opened vein  that lies under my  steroid and Coumadin weakened skin?

            I can’t see any benefit from these asinine questions. My insurance is through my work, I can’t be dropped.  Aetna must possess a voodoo doll with my face on it into which they  stick pins.  I am aware Aetna’s’ stockholders lose 5 cents in dividend income every time I receive  $10,000 worth of IVIG.

            I should not be alive. I recall a Bill Maldin   WWII cartoon.:

 I feel like a fugitive from the  law of averages.

 That’s me. Don’t ask about my bloody  blood pressure, ask about my risk of secondary malignancy  from all -out land assault that was launched against my marrow and  flesh.

            Still a cool $500 saving  just by  answering some questions .           I’m   answering questions about  stress and  alcohol when I get to the question I’ve been dreading since I signed on 31 minutes ago.   Question: Do you have Cancer?  There are 4 possible responses

 1) I am living with cancer.

  This annoys me, it’s a euphemistic way of saying  “ I am dying with cancer”

 2) I had cancer but am now cancer free

3) I never had cancer

 4) I refuse to answer.

I Can’t  answer #4… I am not proud of my disease but still,  refusing to answer  is admitting to having cancer

Monty Python, Life of Brian

“Are you a Virgin”

“I refuse to answer!”

“She’s a virgin”

Answer three  is out, because it’s a lie.  So, do  I answer  #1 or 2?  Yikes.  I probably have a few leukemia cells  kicking around inside.  They will lurk within me until I die, kept in check by my overly neurotic and aggressive donor cells.   But, it’s not an accurate assessment.  I don’t expect to die of cancer unless I  have a heart attack while participating   in the   Jimmy Farber walkathon one year, or if I get hit by the LMA bus ( Longwood area shuttle bus)  as it drops employees at the  Farber.

Yikes. A cancer survivor could become an exsurvivor  at this event.

            So, that leave us with

2) I am cancer free

This presents the most metaphysical of all the answers.  Quick Quiz:

 Cancer:   

1) A  clone of immortal cells that are resistant to treatment and often result in death

 2) Cancer:  a  state of violent  change and disruption of  one’s life.

3) A disease that will soak into your every dream, your every waking moment even if you are unaware of its presence.

4) A  disease that will  change you, your family and your future for ever  and ever .

5) Cancer: The ultimate stigma,  every time you hear about any one dying of cancer, you will mumble “There but for the grace of god go I.”

 Choice  number  two isn’t accurate either .  No one is ever free from a cancer diagnosis. No one is ever cancer free once one receives that diagnosis.

 So,  which box do I check? I check?

   5) “Yikes, don’t ask” is accurate but resembles #4.

In the end, the best answer  would be a modified  #1, which violates  the questions euphemistic  intent:

1)   I am living with, existing with, worrying about,  whining  over, obsessing about, terrified by, suffering from the side effects of,  and annoying family members over, my cancer diagnosis.   There.  Where do I check?


(  1) Yikes ! I mean no offense. In any event I have several  sisters in law.  It just seems that whenever I visit SIL  "M" the converstaion turns a bit dark, in my effort to spare Cyn endless nihilistic conversations.  To my SILs : I love you all. 
2  (2) Yikes! It's  SsIL   sorry, grammar police.