19,200

Nineteen thousand, two hundred. Jesus Christ.  Now what?

         We recently decided to reduce testing. We were to forgo scans and blood work unless necessary. We felt liberated in our decision. We would stop sweating the small stuff and just enjoy our limited days.

         It’s not that simple. We decided I would continue receiving IvIG,  a $5,000-dollar, monthly infusion, that lessens infection risk.   Unfortunately, I need  blood work  before receiving IvIG. Rules are rules.

         Of the 33 blood tests the Farber ran, 32 were fine. The 33^rd was my white count. It should be around 5. Mine came back 19.2 yesterday.

Shit. We could ignore the result. Ted my oncologist suggested as much, hold work- up and repeat the test in a week.

         Now, 19.2 is high.  Life threatening infection high.  But if so, where was the infection?  I am taking high dose steroids, they raise the white count. I was just hospitalized with pneumonia so, we decided a chest X ray would be non-invasive and helpful. The X ray blandly reported “resolving pneumonia.”  

         As a hematologist, I see 19.2 and think Leukemia. Specially, Chronic myelogenous leukemia.  A pill now exists to treat  CML.  I don’t think I have CML.  Any hematologist would tell you an increased neutrophil count without anemia, a left shift, early forms, or nucleated red cells is probably a stress reaction, from infection ,most likely.  Flow cytometry would make the diagnosis.  Flow is another   $5,000 test.

         So, what to do?  I am upset when Ted says he is, “open to suggestions” about next step.  He would not be saying this if I weren’t a physician. Doctor, heal thyself. Cyn, who didn’t even come to Boston, calls Sam, my pulmonologist.  He recommended I start two new antibiotics.

         And then I realize I am not treating myself to get better, I’m treating myself for a more comfortable death.  My last  near demise, from elevated carbon dioxide, would have been a good passing.  If I do have a lung infection now, holding treatment may result in the same lovely drifting away. On the other hand, holding treatment might not be the good death but could sentence me to a dark, chronic care ward, where I would have to beg a loved one to kill me.

         What if this is leukemia?  If I don’t treat it, I will develop an infection, or enter a “blast crisis” in which large sticky leukemia cells   form multiple blood clots and stokes. That’s no way to die, either.  I bitterly remember the med school joke/saying:

         "Pneumonia is an old man’s best friend”

         I was a hematologist, I have seen the results of “life prolonging therapy”  

         There is an old Jewish saying “He was so sick he would have to rally to die”. This appears to be my situation.  I am an airplane pilot and we are out of fuel. We will undoubtedly crash. I should attempt a smooth landing (death by CO2 narcosis). Not treating my pneumonia may result in a painful, lonely, angst ridden ride.

         I try to discuss all this with Cyn, but it is brain numbingly sad and complex.  On some days, I feel better off dead. This once healthy body now struggles to walk half a block.  On the other hand, we had a lovely dinner with Abby and Sam last night, that was worth hanging around for. And I can picture Cyn telling me “Your weight is up! Your endurance is improving!”   “Don’t die,” she says, after telling me it would be OK to leave.

         As cousin Larry and therapist Mitch always say, “you never know what the future brings."  In the end, it will be decided for me.  For now, all I want is a life with minimal pain, occasional moments of joy, and to die with peace. 

         Or so I say.  I decided to start multiple antibiotics to treat what is most likely a recurrent pneumonia. I forced myself to attend outpatient physical therapy today, using a cane to walk the 1,000 feet from car to care. If my white blood count doesn’t drop, I may need to consider searching for the cause, not necessarily to get better but to  better aim the crashing plane for the runway that suddenly appears below.

Modern Romance

Another brush with death or, as we call it, Monday.

First, a confession. We are at a medical - ski conference in Utah. “Jesus," I hear you cry, “He’s whining about being unable to cross a room and now he’s at some swank resort in Utah?" In my defense, shut up. Look, we booked this “conference” six months ago, when I was still alive. Cyn deserves this trip.  She was anticipating a break from the daily drudge. I had two choices. I could stay in West Hartford, alone but for TV and trips for donuts with L. My other option was to travel to Utah, attend conferences with Cyn and play with my doctor friends.

Mounting a trip in my condition resembles planning the D Day invasion, but with more complaining. We mailed my enteral feedings to the hotel, had American Airlines wheelchair me across various airports, and arranged for portable oxygen. Park city is at 7000 feet. I saw my pulmonary doctor, Sam, who said I could go if I brought my own oxygen in case of an emergency.

We arrived at Salt Lake City, despite my vow to shun red states until the national nightmare ends. Unhappily, Colorado’s Telluride is at 10,000 feet. My personal dead zone.

         I thought I might occasionally need extra oxygen. Unhappily, I have had to use the oxygen constantly. Yesterday, I was reading in bed and the oxygen generator died. Shit. Now I die again.

Cyn is happily skiing somewhere. I am alone in our hotel room. Do I bother her? I figure I have 60 minutes before passing out. I don’t want to annoy her,

I wait. I wait and wait. I finally call Cyn when I decide she has enough time to return before I pass out. I could have called 911 but that would result in a hospital stay. “I am on my way,” she says, clearly disappointed. Suddenly the oxygen machine restarts. I am safe. I call and urge her to remain on the mountain to ski little longer. She happily complies.

I have avoided discussing Cynthia in my blogs, I want to preserve her privacy in a difficult time.  The disease has altered our relationship. I’ve mentioned my wild, so-far undying gratitude. But we have changed.  First, we can’t have any sort of angry, door slamming argument. We haven’t had a history of domestic turbulence in the past, but I no longer have the option of slamming the door and driving off into the night. I would survive about 12 hours without medical intervention. Most of my supplies are at home.  I’d die in about three days away from Cyn, who has developed a sixth sense when my sugar is 23 and I am about to lapse into hypoglycemic coma.

So, we cannot fight.  I have become “super beta.”

          In the past, if Cyn provoked me, I’d have the option to escalate the argument. Now, provocation is futile, one must never bite the hand that feeds my G tube. 

         As is usually the case, most marital arguments begin over simple silly issues, a forgotten appointment or a broken glass without sufficient clean up. I’ve lapsed into a vaguely supercilious demeanor, in which my apologies are followed by backing down.  I have become Canada.

         We keep hoping I will improve. Anything is possible but I’m starting to worry Cyn may be stranded with a cripple.  I want to be a pleasant life partner. I owe her my life, many times over but that gratitude is robbing us of one important aspect of our marriage, conflict.  Conflict is that frisson of tension that keeps us on our toes and adds energy to conversation, which is 99.5% of any good marriage. 

         When we married, I loved Cyn’s strong will. She is her litigator father’s daughter   I also know she doesn’t care for my new passive behavior.  I should grow a pair, I guess, but first I’d need to grow a new pair of lungs, and a suit of healthy skin. Until that time, I’ll stand down.

L

The past is prologue

         I was an oncologist in the mid 1990s.  My days were filled with drama, but the occasional 48 hour work day were taking their toll. Cyn worked part time. 

         We were raising three children, delightful toddlers who shared blue eyes and  weak lower esophageal sphincters . For this reason, the house smelled faintly of baby formula, the carpets were sticky and crusty, and we realized our decoration schemes had to camouflage the  beige color variation of oatmeal  and Similac vomit.

         Because of our long work days, we hired a series of Au Pairs. These young women appeared  in July and lived with us for a year. They were given room and board and a stipend. In addition, they were treated  as members of the family, with access to our car, and a spot  on our vacation travels.  The program ended after a series of  horrors, committed both by the Au Pair and the families .

         We loved the  program. The kids learned about  other cultures and the Au Pairs learned not all Americans were  fascist-crypto-neo-nazi-tubs O butter. Ah, the Clinton years. 

         Cyn and I  established vaguely parental relationship with our Au Pairs. We worried when they  were out late, or dated local West Hartford boys. I was suddenly the father of a series  of young, usually, Norwegian, women.     

         Flash forward to 2019  The  baby formula has been replaced by Two Cal HN, Dense  Protein nutrition to rebuild my  decaying  body. I spend much of  my day forcing this viscous off -white liquid down my G tube and into my stomach. I spill a little, so the house once again has that   faintly sweet sticky  vanilla scent and  the carpeting  beneath my “ feeding chair” has developed  a nostalgic crust.

         I am well into my second childhood.  I am unable to lift more than five pounds, I can’t stay awake past 7:30 or so and, although I am starting to drive again, my reflexes are a little slow. The GVHD has stiffened my joints and muscles, getting dressed is a 20-minute production. Socks? Forgetaboutit.

         Enter L.  L. is. Twenty something college student. She has become my au Pair.  She treats me with the same amused condescension   I once reserved for my Au Pairs   Karma, is, in fact, a bitch.   She texts Cyn about my mood. ( I’m worried about Steven. He is particularly dark today)

         I am grateful for her presence.  I find our relationship disconcerting, I am certainly not her father (although her real dad is one year younger than I). I am her charge. I’m certainly not her peer, I’m a creepy, creaky  old man.  I try to connect though music, but she doesn’t know about the Beatles, whose music, I realize in horror, is 55 years old.  Music written 55 years before birth included “Give my Regards to Broadway” I am horribly old.

She has no knowledge of Steely Dan, so when I quote them:

         Hey 19, that's ‘retha Franklin’

She doesn’t remember the queen of soul

         Hard times have fallen us soul survivors

She thinks I’m crazy but I’m just growing old

she gives me a blank stare

         Thank god for  bicycle spin  classes  where contemporary music is played  so I have some idea of the current music scene. Taylor swift is still a thing. I have that peculiarity  old men share, an incredulous  anger that young people have no idea of what good music is. How  can anyone exist  not knowing of Paul Simon’s existential "Graceland?" I finally understand the true meaning of the word “ whippersnapper.”

I am grateful for her help. I am taken aback by her bemused attitude. We both know who is in charge.  When I do particularly well at a doctor visit,   she takes me for donuts.  When we get home, she feeds me  250 ml of  enteral  feeding through my  G tube.

She plans to go to medical school.  She needs a place to stay  after she graduates  college. Cyn and I will offer her the old Au Pair  room.  I hope she doesn’t date our  next door neighbor's son. He’s three.

End Game

  By dying, I have made peace with death.

  I spent my childhood terrified of dying. My  chest tightened as I panicked of a world in which I would be no more.  I’d lie in bed and think “These eye will see death”. In my seven year old egocentric  universe, my death would be the ultimate tragedy.

Now, I am not so sure

I have entered the End game, hanging between Erik Erikson’s  stage  7, Creativity  versus  stagnation ( the blog…) and  stage  8, Ego Integrity versus despair. I  remain optimistic  I will  improve , but that’s really my method of managing the uncontrollable.  I almost died a 2 and a half years ago. This was a blessing , really, because it occurred  during the 2016 elections. I was spared the agony that all of you went through, watching a madman  gain control of this country

         The last time I died, though,  felt like the real thing.  A slow graying out of the edges, a indifference  to the outside world, an acceptance of the inevitable.  I have  already been dead  for 14.8 billion years, and I weathered  that period pretty well. I suppose the next 14.8 billion years will pass as pleasantly.

         I am a Jew, we don’t believe in an afterlife.   The very idea sounds so narcissistic, that our lives are so precious as to be preserved forever. Nabokov  pointed out that  heaven would become hell for anyone who  lost a spouse and then remarried.  Then all three would spend eternity with at least one  person miserable.

But that isn’t the point. The point is  that  I have been given a gift,  I have been able to  pass through death and return to  this world. Death wasn’t all that bad.

         My revered father in law  felt it important to tell us  in his final weeks  he was not afraid to die, that his beloved was also gone  and his time was at hand. At the time, I thought this was his bravado, his courage at  facing mortality. Now, I understand he was  gently telling us youngsters that a time would come when Death would not be a  transcendental tragedy.

         It’s  amazing what one can get used to. I have the same story that all  medical  students have, of meeting their horrified  mummified corpse  in general anatomy and finally growing comfortable to be alone in the dissection lab at 2 AM in a room full of bodies.

I think of Michael Herr in Dispatches  who wrote “The only corpse I could not  bear to see would be the only corpse I would never have to."

I want to travel back to find that scared stupid child. I want to tell him that it’s OK, the person  who will die 60 years from now had a wonderful life.   I want to hug him and tell him that he will see wonderful things, he will love college, make love with women, travel the world, and  marry his true love . He will find in medicine a calling that will benefit  others and give him comfort and support

         I want to re assure his unbelieving eyes that death  will become a comforting friend some day,  and that, after years of distress,  death will float in, a  soothing Zephyr of tranquility.

 I want to tell him that  every one dies,  the good and the bad,  and that even in the future, there will be death, no matter how long  science can preserve our  consciousness.

 I remember a saying, but I’m not sure if it’s a joke or a Koan “ Live every day as if it’s your last, and one day you will be right.”

It's complicated

Thanks, Aunt Nancy for the mot juste.

I love Nancy.  She is my wife's Aunt.  Nancy has been a devoted blog reader since I began writing these in 2010.

She lives in Vermont with husband Miles.  We were visiting the other day. Since my last hospitalization, we have felt the need to see family.

Over  simple lentil soup and turkey sandwiches, Nancy turned to Cyn and said “You have complicated lives.”

          This opened a floodgate. We’ve used endless, sad adjectives to describe our fate  We cannot shake the suspicion that at some point in history, I, or one of my past incarnations , stole a golden monkey from a mummy’s tomb or mocked a blind gypsy woman. Karma’s a bitch.

         “Why us?”  Cyn asks. “Why have we been saddled with an unending succession of treatments, side effects, and infections?”

The real question is: “Why not us?”  Nancy has a complicated life. Her mom lived well into her 90s and was severely debilitated for much of her final decade. Nancy couldn’t travel far from Burlington, she spent much time caring for her mom.  Nancy had a rocky childhood.

It’s a vicious cycle.  Our friends express  pity, and this feeds back and amplifies itself into prolonged attacks of anger and despair. Why bother when the Universe gives you the middle finger?

I am now on disability leave, vowing to return to work.  At work, my patients express a similar sentiment. “We feel so bad for you, Dr. Weinreb. We are praying for you.”

They ask how I am doing.

‘” Well,” I complain.  “The medication to control the GVHD isn’t working, and I am short of breath.”  I then realize I am talking to someone who just lost her husband of 40 years.

         “I’m  so sorry for your loss,” I say, when I suddenly remember, pulling myself back from the abyss of self-pity.

         If only a non-judgmental, non-angst-laden word existed to describe our current situation.

The word is “complicated.”  Our lives are complicated.   I spend my days taking pills, giving myself insulin shots and pouring 40 ounces of formula through my G tube to gain back the 30 pounds I lost. Cyn is burdened with making sure I don’t accidentally kill myself, a situation that arises far more often than you would think.

         My life is complicated but I am not disabled. We just saw daughter Abby and boyfriend Sam and his parents. We visited dear  Aunt Nancy and Uncle Miles. There were moments of joy interlaced with the complexities.

But, the point is, everyone  has a complicated life.

Cousin Carol cares for my elderly Aunt.

We all have complicated lives.  Our pain is not unique or special. It is time consuming, but my children are healthy. I know several  people who spend their days caring for sick children   We all have something.

Cynthia and I derive comfort from Nancy’s definition.

Our lives are complicated. Everyone’s life is.

Someone Saved my Life Today

Is it possible to have an egalitarian, mutually supportive relationship in which one’s spouse has relentlessly, literally saved the others’ life?

It has become cliché, the song in which the singer praises the love of his life who appears at the bar to spirit the singer from the Jezebel about to doom him to a life of fruit wine, pork rinds and satellite Television.

         Those of us of a certain age (old) remember Elton John’s “Someone saved my life tonight” in which Elton was probably saved by a gay lover from the charade  of a heterosexual sham marriage (although he had one of those too)

Cynthia has literally saved my life, on a monthly basis yet. The most recent  episode occurred a few weeks ago when I woke feverish and confused, in Boston. Had I been alone, I would have fallen back to sleep and death.

         The problem is, I have become overly solicitous .I will never be able to repay her.  I can never show my gratitude, perhaps she should start walking into the road so I can pull her from speeding trucks.

This obsequiousness  annoys her. I keep asking “Are you OK?” hoping she’ll have some complaint that will help even the score. My adoration quickly turns annoying. We cannot live this way .

I think of the Madonna /whore dichotomy. Men apparently want to marry a Madonna for every room in the house but the bedroom but a whore in the boudoir. I  have a trichotomy, a Madonna/whore/superhero  one.

         She has saved my life on numerous occasions.  She has pulled me from the jaws of hypoglycemia on countless occasions. She has contradicted one of my physicians when he was clearly wrong and started a life-saving therapy.

It has become somewhat of a joke; the number of people who have saved my life.  I remember  the lovely Dutch couple in Iceland who gagve me chocolate and a blanket when I became hypothermic. Betty and Alan have saved my life often just by showing up. It’s. difficult to owe so much to so many people, wishing I will never, hopefully, have to repay them.

The point is, I don’t live with Alan or Betty (yet) I must make our marriage work on a daily basis. I am depleted, I can’t run or climb or bike yet, and may never be able to. I feel  guilt that  the love of my life has  struggled so hard to  save  damaged goods. She ran into a burning house to salvage a beloved  photo, only to find the  photo suffered water and smoke damage .And a limp.

  I’m home bound now, and I frantically try to find interesting topics to discuss when Cyn comes home.  It is the least I can do for a superhero.P: blogging?

Marriage is lived moment to moment. In the dwindling time we have left, neither of us benefits from my hero worship. I find it hard to believe Lois Lane could ever find comfort in Superman’s embrace (or did he have to give up his powers?  I dunno.)

Ted's Text

Ted’s text haunts me.

The scenario: I am drifting away, calmly, peacefully. My last two years have been difficult, times of pain and immobility but yes, also moments of intense joy.

         But I am ready. The carbon dioxide in my blood  has made a dreamscape of the Brigham’s  Boston campus.

         This would be a good death.  No  stroke, no searing chest pain.  Kids are grown, wife  intelligent, funny and attractive enough to find companionship when I’m gone. I had the rare luck of finding my calling as a physician . Unpublished novels aside, no bitterness.

         My bags are packed,  I’m ready to go

         I’m standing here  outside  your door

Cyn has made it clear to the house staff that I am not to be intubated if I stop breathing

Then Ted sends Cyn a text.  I’ve known him eight  years.  He is smart, humble, and knows my peculiar situation.

He has watched me decline. He knows I love to ski, hike  and take 100 mile  bike rides. He knows I now walk slowly, stiffly. He knows Cynthia, and how she has suffered.

He is no stranger.

So why  the text?  WE NEED TO INTUBATE STEVEN THIS IS A TREATBLE PROBLEM AND HE WILL RECOVER

Does he understand that  my quality of life is poor?  Does he really believe that a 59 year old in poor health will ever recover after  being on a ventilator?  I have lived a remarkable full life . Does he understand that  I have already seen London, I’ve seen France and, in my prime, saw women’s underpants?

A deeply unsettling aspect of our relationship is that  I have sent him patients.  Some have not done well.  We shared a patient in clear decline. I kept asking  Ted  if  hospice was appropriate . “No no, this is a treatable cancer, we’ll push on”

The patient  died, horribly, a “full code”  of gore and broken bone .

 Am I on the same  glide path?  Am I being spared a shot at a good death because a possibly worse one awaits?

         So why the instance that I be “Full code?”   Is it that  we have become friends and he  feels  bad for ne, and this was a misguided but touching display of concern? Perhaps an ego thing,  prolonging my life to add good data to a planned paper?

         I mention this because  I have found  my patients who get the best care are those who annoy me… slightly. My patients who have become family over the years have a problem. I love them, and don’t want then to die,  Perhaps I’m more  likely to shrug off a slightly elevated  liver function because I want then to be healthy.  The patients  that irritate me   get the best medical care.

Pt X has been my patient  for 20 years. X   is always in pain, always  mentions symptoms  I suspect may be due to depression, although X refuses to seek counseling or medication.

X presents  with  lower left  back pain .The story sounds off for skeletal or osseous  pain.    If  X were a beloved patient, I would probably reassure.  Why expose a loved one to excess radiation?   

I also suspect she would be furious if I  missed anything. In any event, I somewhat passively aggressively ordered a Real CT, showing an early  renal cancer. She is doing well.   

Moral of the story is to make sure you annoy your physician on a regular basis.  The best way to do is to insist on a 15 minute visit and bring in a typed list of  at least 10 symptoms

Oncologists  have to remain optimistic . If they weren’t, their job would consume them. I always feel better when Ted  reassures me that I will get better. I am willing to suspend  disbelief.  

I am glad to be alive. I am glad I am DNAR.  The term “Do not resuscitate” was changed  to “Do not attempt to resuscitate ” because  the original phase implied. Resuscitation was a likely outcome.

When asked, most physicians would want to be DNR, because we have seen the horrors of  resuscitation.   So why  did Ted want me to be  Intubated?

Make your wishes  known now,  document  your advanced directives .Patients think its ghoulish  to discuss, but the opposite is true.   You don’t want your loved one to make a decision about your  terminal  hospital care without your guidance.

          I have had the good fortune to experience my own DNAR death. It was great. Had I been intubated, as the house staff requested, I’d probably  be in a nursing home right now,  too depleted for rehabilitation .

So, why the Text from Ted?

           

after the end

I’m back.  I’m back in so many ways.   I started blogging ten years ago as a method of coping with a new situation, my diagnosis of chronic leukemia.  Been a long crazy road, picked up a few readers, made a few jokes, shared when I though doing so would go beyond narcissism  and platitudes.  And then life returned. And then it didn’t.  My life has entered a new bizarre phase,  I hope I can write about it without relapsing in maudlin cliche.   I learned along the way we all suffer, that my misery, while odd, is part of the human existence .
       Things changed. I was working part time, but feeling weaker. I started losing weight. My leukemia is gone, but its ghost , GVHD lingers, stiffening my  skin, choking my breathing.
And then, crisis.
Marriage, as I know it,  has had clear stages.  You meet, you fall in love, you may have kids. You may divorce.  If you hang around  long enough,  on one inevitable day, if you’re lucky, you say goodbye.  I said goodbye to Cyn a few weeks back. Despite all  we’ve been through there was always the expectations that there would be an afterwards, time to reflect and heal.
I said goodbye to Cyn the other day.
Hospital. Pneumonia. Unbeknownst to me, I was retaining CO2. I was suffocating but in no distress.
I remember little. I remember driving to the hospital, telling Cyn I was ready to die, life has become low level discomfort punctuated  by hospital visits every few months. I was ready to go
I remember Cyn’s crying face “they want to intubate you. I told them no, what do you think?” Odd bitter irony! The one moment you need to make the ultimate existential decision is when you are confused, tired.  “I want more time” I said, stalling to see what came next. My next thought was how much I’d miss her , but of course, I wouldn’t miss her at all. Cyn turned to the intern "he is DNR. DNI." “Well  you’ll need to put it in writing” the intern said. On reflection  how odd. You’d think the house staff would welcome avoiding the complications of putting someone on a ventilator . “ Fine” Cyn said. Ted ,my oncologist ,called  annoyed . “ This is not fatal, this is reversible” he told her. Once again, amusement on my part.  He has no way of knowing my current quality of life.  Who is this pisher making life decisions for me?
Cyn holds firm. She says goodbye.  to me. She is exhausted. I flash back on the death bed scene from Love Story  when Ollie gets into Jenny’s hospital bed and she dies in his  arms .  I was a tangle of tubes and wires, it would have been impossible.  I remember putting our cat to sleep. The Vet had a “bye room”, furnished  like a hotel room where one holds ones pet  as the pentathol flows. Clearly American hospitals need bye rooms.
Cyn leaves.  I lose consciousness peacefully. I am warm, I am loved, I will be missed, but Cyn will be OK.
And then. And then. I’m in a hospital room and the house staff is poking me.” Dr Weinreb, Dr Weinreb.   Where are you?  “Hospital”. Why is this a special day? “Because the patriots just won the superbowl ”. ( no kidding). I must admit, I was a little annoyed at being woken from eternal tranquillity to be quizzed on sports trivia.

It’s two weeks later.  Life feels differently. I feel as if I died and the afterlife bears amazing similarity to the one I just left. Cyn is so tired and has full blown PTSD.
What have I learned? DOCUMENT YOUR DNR orders.  I have learned to be wildly excited by simple stuff. I walked 3/4 mile yesterday without oxygen and felt as if I had just run and won a marathon.
The hardest part of the afterlife is letting hope back in. I need to hope that perhaps I could..,..return to work.....maybe take a trip. Otherwise life. Is just cans of ensure and constant frantic motion.
I have much to say. Will say more tomorrow.