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!