Wednesday, January 6, 2016

Stay Strong, Brother




“Stay strong, brother.”

I smiled weakly.  Certainly, he deserved acknowledgment.  He was reaching out, trying to be encouraging, supportive, and friendly, but I was late.

I was late because I had driven to the wrong site for my Reclast infusion.  I drove to Hartford Hospital through treacherous morning traffic, pissed I was late due my own ineptitude. I wasn’t going to cope with employee parking, either.  Every orthopedist thinks he or she is Dale Earnhardt.

So, I drive up to the Valet parking.
A young kid (these days, anyone under 32) runs to my car.

I’m here for my treatment at the cancer center, ” I say. “May I park here?”
He gives me a sad look.   "Sorry, its no longer free…” he trails off, not finishing the rest of the sentence, "... For you cancer warriors." I did actually think parking was free.
“Fine,” I say, “Thanks.”

 I jump out, and head for the Helen Gray Cancer Center
Stay strong, brother” He calls after me.

“Stay strong brother” the statement carries dread and peculiar emotional weight.
I’m pretty sure,   “stay strong brother” Is not the response when a patient pulls up and says:
“ I’m here for the AA meeting, where can I park?”
“Where is Diabetic training?”
Or even (and this is weird)
“Where do I park, I have an appointment   at the Chronic Heart Failure Infusion suite?”

Why do I get a free ride?
More to the point, why don’t I stop and say,  “Oh no, you misunderstand, I had cancer, Now I’m in remission, and prednisone has caused osteoporosis, so I need a Reclast infusion.”

That’s why I am here.    In my mind, Cancer is a tragic but non-lethal disease that leaves its victims sadder but much wiser.   Fighting cancer apparently was the only way I could have gotten a New York Times Op Ed piece.   I would not have been published if my piece began,
         “ I have ambivalent feelings about my job.”
I would not have been published without help from friend Judith, but that’s another blog.
Cancer is less lethal than end stage chronic heart failure,
         “ I spend one hour a week receiving infusions that permit me to live a few years more, because circumstance beyond my control has denied me the chance at a heart transplant and survival.”
         Oh wait… Judith, you reading this?
         In my 30 years in medicine, the death rate among those receiving infusions for CHF is   still 100%, while the survival rate for chemo insensitive  CLL has gone from 0% to… well, much more.
Cancer may be  a serious  disease, but curable ( ptoo ptoo) in 100% of the bodies in which I have inhabited.
         Prednisone, on the other hand, is a tablet of pure misery, Satan’s own Pharmaceutical.    Prednisone has ravaged my body , turning my skin to paper and my  lenses to opaque,   cataract -clouded stones. Prednisone has dissolved my bones giving me a T score of -2.7 ( look it up, on a roll)
         Since my hip bones will transform into chalk within 5 years, I receive Reclast, a bi phosphanate.  It binds to the bones, and makes difficult for our osteoclasts (cells that remodel our skeletons ) to destroy our lovely bones.

There is a wonderful aside here about how plumbers discovered that   bi phosphanates unclog soap- clogged  (read calcium- containing compounds) pipes. That’s for another time.

         Cancer has become a lovely, benign tool for me.  This reminds me of Curb your Enthusiasm when   Larry David discovers that saying,  “ I can’t come because my father just died” is such an effective dodge that he uses it well after Shiva is over.
         When must someone stop play the cancer card? When Chemo is over?   That’s true at the Farber, where suddenly parking is no longer free.
         Must one return to the banal world of the cancer-deficient  after one has a statistically good chance of long-term survival? For me, that was ( ptoo ptoo) over 2 years ago.
         Or, is cancer like the military, 20 years after the battle is over, one can still get a Free sundae at Friendly’s on veterans and I presume, cancer survivor day?

I’m cranky these days from a withering combination of my medications, the effects of prednisone and the overall irreversible bodily mayhem that   occurs even years after treatment. 
         I have the lungs of an 80 year old, and, believe me, after a day of seeing a mandated 2.2 patients an hour, those 80 year old lungs are fighting for survival.
         Is it fair for me to say, “I just can’t see another patient, Olga, it’s...”
         “I know, Doctor Weinreb. Stay strong.”

Thursday, December 24, 2015

Merry Christmas, Mr Shkreli



I’m having a real problem hating Martin Shkreli.

You probably know about Mr. Shkreli. He is the 32-year-old Wunderkind and hedge fund manager who cornered the market on Daraprim, a medication that  among other uses, is a treatment for AIDS patients  with  toxoplasmosis. His pharmaceutical company became  the world supplier for Daraprim, and raised the medication to  $750 a pill, triggering worldwide outrage and a series of sarcastic op Ed pieces. These pieces all ran along the lines of ” Now that he needs a lawyer, let's charge him $ 10,000 an hour for legal help.”
         Ah Gail Collins, you cut up, you.
 Why the anger?  Could it have stemmed from the Uber self-indulgent you tube videos of him in his Manhattan apartment, blathering on about life as seen through the eyes of a drunk 32 year old Plutocrat?
Is our scorn  based on the concept of cornering the market in a precious commodity?
         American history is filled with those who have done so with  varying degrees of   success and/or fame.  Jay Gould cornered the gold market a century ago.  The Hunt brothers did the same in the 1970s in the silver market.
In any event, we glorify those  scoundrels who have the knowledge and intestinal fortitude to corner commodity markets.

From Ohio Mister Thorne
Calls me up from night 'til morn,
Mister Thorne once cornered corn and that ain't hay.
Aha!
But I'm always true to you, darlin', in my fashion,
Yes, I'm always true to you, darlin', in my way.
--Kiss me  Kate ( as if you didn’t know)
 I’m terrified when scarce drugs suddenly become unavailable for  obvious reasons. I occasionally lose my bottle of  Rapamune, a  GVHD suppression drug,  and I have a buy a few to tide me over. They’re $50 a pill because only one company makes then… well,  they’ve gone generic, so  Sirolimus is somewhat cheaper.  I understand the terror of develping toxoplasmosis, an insidious  parasite that  grows in the brains of the immunocompromised.  Daraprim is the accepted treatment and  now unavailable Fortunately, as is almost always the case,  substitutes exist, so when I develop toxoplasmosis from cleaning the cat litter, I can  probably get by with Bactrim.

Mr. S isn’t alone charging outrageous fees for medications. Amoxicillin costs 2.5 cents a pill  to make.  CVS sells 20  Amoxicillin for $ 48.50,  or  about 2.40 a pill, a mark up of 1000%. Daraprim sold for  17 dollars before Mr. S bought the company he charged $750 a pill, about  1/ 2 of the CVS mark up. I don’t see any of us protesting CVS, although we should for so,so many reasons.

But this case deeply troubles me because I feel we ( that is me, and  you, dear reader, who I hope has a soul, a sense of justice and right versus wrong)  are partially responsible for this sad  situation.

First off,   Amorality doesn’t  evolve in a vacuum. No one sat Martin down as a child and said,
“Martin dear, just because something is LEGAL doesn’t mean it is MORAL and you  should do this. “
Did the guy ever go to church or Synagogue? (I’m afraid to look up which)  Didn’t his parents  ever read  little Martin he teachings of Robert Fulgrum whose  cliché ridden  “What I leaned in kindergarten” should  be taught  at Business schools across the country  because his  preaching, although treacley, is sound.

I believe  Baruch College ,where  Mr. Shkreli   leaned his moral compass, should have  told him:

1. Share everything.
2. Play fair.
3. Don't hit people.
4. Put things back where you found them.
5. CLEAN UP YOUR OWN MESS.
6. Don't take things that aren't yours.
7. Say you're SORRY when you HURT somebody.

         And then  Mr. Trump hits the national stage. He is a creation of the times in which we live.  He is a hero to  multitudes  even though he is the sort of  person the devil assigns to you  in the next world to pay for a life of  greed,  selfishness and close-mindedness.

Trump is an idol, even though his  high rise on central park south (Legally) blocks out the light for several buildings that   once fronted the  park. This wasn’t so bad, I guess until Mr. T  hung a sign that said “ Go Fuck yourself , don’t you wish you lived here?” ( I paraphrase, but that’s really what it said) and made sure it faced the blotted -out building behind his. The man has  infringed on more air rights than a Sicilian  at a  cocktail party ( is this racist? They tend to be close talkers, as a people.)
 The second reason we have to give  Mr. Shkreli a pass is that he was doing what he was trained to do : Find a vulnerable market and exploit it.  I suspect all first year Harvard Business school students are taught a course  titled  “ Exploring  and capitalizing  under -utilized markets” but should probably be called ,“screwing  the poor and ill for fun and profit 

 The metaphorical  blood is on our hypothetical hands because we have allowed  big business to control our health care system
Properly done, heath care is a money-losing proposition. Hartford Hospital (  losing  30 million this year)  has a full trauma operating room running 24 hours a day. If your car is  T boned on  Interstate 91 at 3 AM,  rest assured  a capable  vascular surgeon will be available to  sew you up. An OR costs about 2,000  dollars an hour to run even if no surgery actually done,  and someone have to pay that bill.
         We are at fault because we haven’t demanded a single payer  system  for health care for everyone . The thought of veterans dying in the snow because they didn’t have health care is so repugnant to us that we have built an entire VA system that insures this won’t happen.  If  you served your country we won’t let you die in some  hospital parking lot after being  T Boned on the Highway. We wont let a veteran die of Toxoplasmosis  either, for that matter, if we can help it.
         This whole sorry  Shkreli affair could not  happen outside the US, where  the government tightly controls health care.
If  Britain needs more Daraprim, they’ll pay  someone to make more. The Republican Party, home of Mr. T,  insists  people take responsibility for their own healthcare. Everyone has a duty to make sure he or she is covered ,or suffer the consequences It’s  all fun and games until a non veteran  lacking health insurance gets T Boned on Interstate 91 at 3 AM and is brought to Hartford hospital.
         “You don’t have insurance?  You’re not a Veteran? Hm,.. you better go bleed to death in the parking lot.”
That’s not going to happen.

So much of what’s wrong in this country is a result of our own  inability  to protest evil when we see it. I think of the late great Phil Ochs’  “A small circle of friends”

Oh, look outside the window
There's a woman being grabbed
They've dragged her to the bushes
And now she's being stabbed
Maybe we should call the cops
And try to stop the pain
But Monopoly is so much fun
I'd hate to blow the game
And I'm sure
It wouldn't interest anybody
Outside of a small circle of friends
Ridin' down the highway


I don’t have to add that  Phil killed himself a few years back.
What about those poor German civilians   who watched in horror as the  Russian army invaded  Berlin?  What about the atrocities visited upon the women ( as another aside read “All the light we cannot see” for a horrific depiction  of that  small holocaust)
         The German civilians must have cried out as the  Russians tortured them  at the end of World War II, “Its not us! Hitler wasn’t our idea! We are innocent.”
What’s our excuse for watching so much brutality and  cruelty  evolve in our country?  Why don’t we protest the gun lobby and the  private health care industry? Why don’t we really, really care when AIDS patients  can’t afford their medication? We don’t care until  tragedy befalls us.    Jim Brady didn’t give a whit about gun control, until John Hinckley tried to blow his head off. Too little too late, Jim?

I fear my life is spent
No one is innocent
         --urinetown  ( it’s on i tunes, , I guess)

Martin  Shkreli sprang from our loins. He capitalized on a weakness in the system,   exploited the poor and ill in a way that  should make his  business professors  proud and the rest of us a little  unnerved

You taught me to talk
And the benefit is
I know how to curse


---Calliban from the Tempest

Friday, December 18, 2015

The Whitney


The Whitney was crowded but I felt fine.   The Whitney Museum of American art recently re opened in downtown Manhattan after a long run on the Upper East Side. I missed the Whitney. My old friends, the Hoppers, the Picassos and the absurdly obscene instillations were back on display. I roamed room-to-room seeking out my old pals.  I ran into my old friend George Bellows and we both watched the Dempsey – Firpo fight.*
         This was a new experience Not the art, but the disorientation of being well.  Chronic disease is a constant logistical battle.   The mind spins with desperate, absurd, surreal questions. Where is the nearest bathroom?  Sip of water? Where can I lie down if/when I feel sick? If I had to leave,  where is the nearest bed? The nearest hotel room, the next train back home?  Each medication carries its own cacophony   of  side affects  and  Graft versus host disease is like  firing a machine gun into the night. You don’t know where the next bullet will hit  but when it does, there will be pain. Will my  4 ½ year old  white cells  declare  Fatwa against my liver again? My mouth?  My skin?
         The battlefield was clear today.  The analogy of cancer to war is  excellent:  You win the war but the  insurgents hole up and occasionally  descend into town, taking no  prisoners and raising havoc, when you were certain  peace had been declared .
But oddly, this  piece isn’t about me. It’s about Cynthia.

Dear Cynthia , who  stood by me for  the past 8 years of this non ending psycho and melodrama.
         Now its her turn to  search for the closest place to find cool water, a  life saving snack, a clean  and near-by bed.
         Her destroying  angel came in the form of Spondolithiasis.          For  years  her  back had slowly dteriorated. If the spine is a stack of quarters, her spine was more like a game of Jengah where the   wooden sticks are pushed askew. Eventually the stack collapses, the game is over, and it’s time for  serious surgery.  Six weeks ago she had   back surgery where   surgeons trimmed the  overhanging  vertebrate that  were  pressing on her nerves. The surgeons then  made a paste from her bones and spackled the transformed spine to  rebuild the  whittled column that had been her backbone.

          Back at the Whitney, I rush over to greet  my old fried Frank  Stella, who is  hanging out against  a wall . Cyn follows behind, walking slowly, pain etched on her face.
“What’s wrong?"  I ask from reflex. I know that face , the one that  means “I’ve hit the wall, I’ve overdone it and I need to retreat.”  I have a similar face.

And I want to say “I know how you feel. I know exactly how you feel. I know what it’s like to be  77 miles from your bottle of pain medication  and realize you must spend the next 4  hours  seeking out and returning with the  life saving elixir.

                  I don’t want to say “I know how you feel” because she’ll say, “You can’t possibly   know.”
         The conversation will degrade into  a sad  rumination on who suffers more. Please,  Cyn not in front of Frank
         I an amazed and terrified by the similarities of our experiences,  the feeling one can’t go another step, the  nihilistic feeling life will be a series of painful moments, unending  until the  grave’s perfect peace.
         She makes the same ridiculous statements I used to say.  “I’ll never be better.” “ I’m  sure the  treatment didn’t work, They’re lying to me.”
          I find myself having   doppelganger conversations:


“I’ll never  feel better again”
Of course you will
No, no, I will never feel whole again
Of course you will

It is as if we are auditioning for the same role in a play and we pass the  script back and forth to see who sounds more sincere in each role.
Cyn has taken on a dreadful habit I once enjoyed: She wakes and rates the day ‘ Today will be a B-. Today will be an F. I once did the same. No need now, I’m settling into that B+/A- state  that's good for most but will keep you out of medical school.
What amazes me is that Cyn and I are so different. I am  everything she is not. I am  maudlin , vindictive ,  sentimental and  self pitying.  Cyn   exudes confidence and calm, her father’s eys looking out at world  from which he has departed. Cyn and her dad hate self pity, I  turned it into an Olympic event.
         Cyn was recently named  VP of  primary care at our hospital. She has done an amazing job  reigning in  and soothing the  4th grade  fragile yet preposterously self important egos of most docs. Had I been given the position, I would spend my time  evening up the score, firing anyone who had offended me over the past 18 years.  I'd soon be alone.
         My  self pity led me to believe there is nothing, save the suffering  of one's child , than one’s own suffering. I have always felt  the Deity  singled me out for some karmic retribution,  that is, until I tell someone of my fate and  he or she replies with a tale so grotesque and horrible  I am driven to ashamed  silence.  I am merely miserable; I am not among the horrible.

         I feel that life is divided into the horrible and the miserable. That's the two categories. The horrible are like, I don't know, terminal cases, you know, and blind people, crippled. I don't know how they get through life. It's amazing to me. And the miserable is everyone else. So you should be thankful that you're miserable, because that's very lucky, to be miserable.”
 ---Woody Allen

         But there is something worse than one’s own suffering. The suffering of one’s mate is far worse.

In suffering one has pity,  one has carte blanche to be  sad and bitter, to lash put against loved ones,  to transgress in a million innocent and not so inniocent ways . There is  perfect peace in  being terminally ill, as I learned when my disease roared back and I was beyond chemotherapies’ ambivalent  but sometimes helpful grasp.  .  I have known all of Kubler Ross’s  stages of grief, even the last stange, acceptance ,which is not acceptance in the  positive, life affirming  style   but  the feeing  the mouse feel’s as she is borne from earth in an eagle’s mouth.
         Once upon a time I ached over my neoplastic fate, the pain of  cancer therapy, of  relapse, of  endless side effects.  Cyn was there every step of the way.  Now I know the utter helplessness of watching one's loved ones suffer, knowing there is nothing, really, that can be done to assuage her pain. 
Now its my turn to ache again, over the sufferings of my dearest.  

Update: Just got back from the  orthopedist. Mike  is a jolly,  reassuring guy, who reviewed Cyn's X rays and said " You' re doing great"

ptoo ptoo ptoo


Maybe life is retiuring to the daily  disater of mere misery. I hope.



* A tad obscure. Sorry. George Bellows (1889-1925 American painer. Paineted Dempsy Vs Filpo ( 1924) Love the pic because  Bellows is the bald guy to the left.  I live my life for  inside art jokes. 
George Bellows/ He's the  bald guy on the left



 Frank Stella
Jenga. That's What Cyn's spine looked like

Sunday, May 31, 2015

take two

 He was fighting a losing battle against cancer and was receiving experimental chemotherapy.   His spouse demanded everything be done to keep him alive.  “He’s too young to die, we have small children,” she sobbed. I suggested making him DNAR, do not attempt to resuscitate, and she became angry. 
“Boston  tells us the chemotherapy might work, and if you make him a no-code, you have extinguished any hope we might have.”
The Hospital called.  He was failing. He was on pressors, intravenous medicines used to maintain blood pressure at times of crisis.
“I’ll come right down, “ I said. I would speak to the spouse, discuss the perils of being a patient with advanced cancer who underwent cardiopulmonary resuscitation.
By the time I arrived at the intensive care unit, he was gone. He lay on a gurney, eyelids open,  eyes bulging from their sockets from the 30 minute-long  attempt to retrieve him.  His expression was one of abject terror.
His arms were swollen and bleeding, stigmata from multiple attempts to insert 18 gauge needles as he lay dying. I beheld a scene of un imaginable violence.  

  My patients with advanced disease who undergo in-house  CPR share  a common fate. They all die alone, without family in attendance.  When CPR begins, the family is hustled out, useless civilians driven from a battlefield, an alien arena in which they are useless.Worse, their weeping and attempts to comfort their loved ones makes resuscitation hazardous for patient and family members alike.  One cannot  embrace a loved one receiving  a 360 joule electro conversion shock. 
                     I am wary of buildings bearing messages, Work Makes One Free, Ignorance is Strength, but the portal to every Medical school and hospital should bear the warning:
  Death is not the enemy, Suffering is.

Modern medicine has forgotten this simple truth, at our own peril.
             I have taken to making house calls.  Some patients are bed bound, so I throw my stethoscope in the Honda, don a white lab coat and drive Connecticut streets, seeking my wayward patients.
            The results have been startling.
            I enter a house. The patient lies in the living room, in a hospital bed, dying.
In our storied past, loved ones died of old age.  Once upon a time, we died at home.   We died upstairs in the master bedroom, covered in a hand -made quilt as family members said goodbye, reminisced, shared the vigil against encroaching night.
Nowadays, no one dies of old age.  The term itself has become vaguely grotesque, politically incorrect, and pessimistic. Patients die of atypical tuberculosis, protein wasting syndrome and immunodeficiencies, By giving name to these conditions, we imply that treatment, and hence salvation, exists.
 I blame Dylan Thomas.  We have taken his admonition to rage against the dying of the light to heart
Family members approach me. “ What did Boston tell you?”   Boston, medical Mecca, has become shorthand for,   "the place where my loved one will receive a lifesaving diagnosis and treatment.”
           
I blame ourselves as medical providers. We sometimes encourage futile therapy, claiming to restore hope but forgetting that  the new proposed therapy has the  slimmest chance of success, at the  expense of additional suffering for patient and family.
Insurance companies’ policy rates are skyrocketing.  I am not excusing their behavior but rates increase when we decide as a culture that a brain MRI or 30 minutes of a cardiopulmonary code would be more therapeutic than soft classic music in an upstairs bedroom where the lights are low and the air smells of lavender lotion. 
To be fair, we are staring to recognize that a patients’ death is not necessarily an indication of our failure.. We now use the phrase: Do not Attempt to resuscitate, rather than Do Not Resuscitate.   This subtle shift suggests there is no magical procedure to return our loved one from the banks of the River Styx.    We need to teach our medical students that every patient will eventually die, will eventually fail to respond to  any number of  expensive treatments and uncomfortable testing.
This raises the point: Is Cardiopulmonary Resuscitation ever useful, especially for  patients with cancer?
The answer lies in a patients’ health prior to  CPR.  If an otherwise healthy patient with cancer ( or without cancer, for that matter)  suffers  a cardiac arrest,  CPR offers a reasonable chance the patient will leave the hospital alive. For debilitated cancer patients (defined as those who spend at least 50% of the day in bed) a 2002  study pronounced   Hospital based CPR “ Futile.”
       I have been fighting  Chronic  Lymphocytic leukemia since 2007, and underwent  a stem cell transplant in 2011.   I wrote of my disease and the need for universal vaccinations in a 2011  New York Times op ed piece. I wrote that cancer taught me the value of community.  Cancer has now taught me that death is not the enemy, suffering is. I am in remission ( excuse me, Ptoo ptoo) but suffer  daily from Graft verses Host disease, an insidious  syndrome in which my donor cells attack my own innocent tissue.  I have experienced days so  pain filled that I  wished I could end my suffering in any way possible.  I don’t mind dying, I dread suffering, especially without a reasonable expectation my misery will end.  I view CPR for the terminally ill as a form of needless misery.
       My patients are becoming more involved in their healthcare. They demand that I review their CT scans and blood work with them.  I see real irony here, but I also see a chance for improving health care delivery. My patients panic when their MCHC  (mean corpuscular hemoglobin concentration) is elevated. They want to know what that means, The honest answer is  “if you are not anemic,  an isolated abnormal MCHC doesn’t mean much.”   I wish they showed as much interest in their DNAR status. We ask our patients to sign DNAR papers which describes CPR in the mildest terms .  Our form reads, in part
        if you stop breathing would you allow a tube to be       inserted into your throat?
       These forms should be more honest and more accurate. They should read:
       The chance of survival  in any patient with any terminal disease who undergoes an insertion of a breathing tube and  the application of electrical shock to the chest is essentially zero. During this attempt at resuscitation, you may experience pain, anxiety and fear. If you require the insertion of a breathing tube, your family will be forced to leave the room and there is a possibly you will die in pain and without loved ones around.
       I contemplated requiring  all patients requesting “ full code status, no matter what” to watch a video  of a patient undergoing  CPR, but that would be too gruesome  to watch.  Viewing such a video could produce its own suffering.

        If I were hospitalized because my cancer had returned, I am certain I would request DNAR status .
       A Johns Hopkins study found 90% of all graduates from the Johns Hopkins school of Medicine would decline CPR unless they had an acute, treatable condition. We  physicians have  run or watched  too many attempts at cardiovascular  resuscitation  to want this procedure performed on us.

        When my time comes, I want to die in my bed,  the sound track of  Kiss me Kate  playing in the background, a generous dose of morphine and Ativan  soothing my central nervous system and the  healing scent of chicken soup wafting up from the kitchen. Wouldn't you?