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.