Danbury, Connecticut ,5 AM

            I woke  at 5 AM at  the  Danbury, Connecticut  Hilton,  son Dan sleeping in the other bed.  Another typical day.  Dan  is home from school for the weekend but his ride only went as far as Danbury, arriving  there at  2 AM.  We work today so we couldn’t pick him up 60 miles from home in the middle of the night .The logical  solution : See a movie (  Pride, not bad)  dine with friends,  then drive to Danbury,  check in at 11, PM, wake in the morning  with Dan and drive home in time for work. Easy.  Easy but exhausting.

            Shit. My first patient has a rash.  Rashes terrify me these days. Patient tells me about a new, painful rash blooming beneath the shirt. “Let me see,” I say with dread.

            Zoster.  Herpes Zoster,. Shingles. Shit

            “Is it contagious?”    

            I sigh “ You are  slightly contagious,” I start my well rehearsed  soliloquy. "You can infect others who lack an intact immune system.  You need to avoid babies and people who have never had chicken pox.   "And, “ I add, trying to drain the terror from my voice,  “you can infect anyone who has had a bone marrow transplant  within the last 5 years. You could  kill them  from disseminated Zoster. Now please  lower your shirt.”

            I bite my tongue, avoiding the following forbidden phrase … “ You know, I had a bone marrow transplant and this could  kill me.”

Disseminated Zoster

            I told a patient that a year ago, and I suspect he is still traumatized  by my confession. It’s not the patient’s fault I am damaged.  A normal person wouldn’t agree to see zoster patients, but I suspect a normal person would not   drive from Danbury to  Hartford at 6 AM to accommodate a college -aged child.               Anyway, why should I worry?  I gulp 1200 mg of  Acyclovir a day  and undergo  monthly infusions  of intravenous  immunoglobulin  to arm myself against  disseminated Zoster, a  disease as horrific as it is fatal.

             Later that day, I bump into the receptionist.

            “We were worried. We though it might be shingles, we didn’t want you to see the patient.”

            “It’s fine,” I say, trying to gather enthusiasm.  “Send me all your rashes.”

            I live in two worlds these days.   I want to  live an intact, healthy life, I want to  do crazy things at odd hours, I  don’t want others to pity me or make allowances for my medical condition.   And yet, I am not completely well. At a bar last night, waiting for the food to arrive, I suddenly felt weak, overtired. 

            “ Is there a chair for my husband? ” Cyn asked  a waiter.  “ My husband is sick.”

             I don’t want to be that guy.

I carefully plan each day, taking care not to exacerbate  the situation. I  wake early. I eat a high protein breakfast.   I  don’t eat at work,  carbs provoke  an insulin and cortisol storm  that  makes it difficult to concentrate.  I work 26 hours a week, 8 hours a day because becoming over tired leads to  GVHD storms.

            I don’t want to be that guy,  the  guy with excuses.  I  want to work extra shifts, because we are short staffed and I want to help out, after the other providers  were  kind to me when I was  hospitalized.   I want to set an example. What would I tell a patient who asked for life- long jury duty deferment because of  a cancer diagnosis? I would tell them to  buck up, cancer is not a death sentence, I’d tell him or her  that   I’d  give a year  deferment but after  that,  we’d have to reassess. And then I received my jury duty notice. I had the opportunity to avoid jury duty for life.  What to do?

This is what I did.

            I am  at a crucial point in my life. I have two choices:  Surrender to the discomfort and fatigue and request life-long disability.  Or, I can fight the fatigue, the weakness, the mouth sores. What do they say? Fake it till you make it?  Kurt Vonnegut wrote that turning fifty was like crossing the peak of a roof-top,  after that, one descends the other side.  I could descend slowly, carefully, or I could surrender and  slide off the roof.   Some days, I feel like letting go.

 Alli calls.  She is  looking for volunteers to work an understaffed office this week. But it’s at night, when I am tired, and that would mean working 6 out of seven days. I tell her no. Let someone else do it, someone who isnt having an immunologic war waged in his or her mouth.

            I  woke this morning in our temper pedic bed, contemplating  Steve Hawking radiation.  If an anti particle is destroyed while its particle twin  is released, doesn’t this imply a loss of data?  Doesn’t that  contradict the  quantum law of  information retention? Doesn’t this imply none of us exists? We are a hologram cast  against the heavens?   I try to roll out of bed.   Panic. The steroids and the GVHD have weakened my muscles and it's hard to move. I spend the rest of the day in a fog. I drop my chop sticks at dinner, the steroids and my recent bike riding have provoked a neuropathy.  I eat my rice like a westerner.  With a fork.

            I don’t want to be sick.  I am not looking for secondary gain. I want to work longer hours,  pick up extra shifts.

            This year, I am mentoring a first year medical  student. We see patients together one day a week.  I have been given the privilege of training future doctors.  I don’t want to teach her about cranial nerves and  the best technique to hear a   mitral murmur.  She ‘ll learn these skills elsewhere. 

            I  do want to show her why  my 90 year old patients   need  colonoscopies ( dying from colon  cancer isn’t a matter of just falling asleep, it  involves pain,  emergency  surgery,  intravenous medications and multiple hospitalizations)  I need to explain why people with terminal  cancer insist on  taking their anti cholesterol medications (even the terminally ill can hope for a prolonged survival)

            I want her to read Dylan Thomas, I want her know about   patients who rage against the dying of the light  and why.

            I wasn’t able to mentor in the past, afraid  I would be dead  or disabled before their 3 year long  education with me ended.  I wanted to mentor to demonstrate that cancer is not a death sentence, we can  receive  a  fatal diagnosis and still show up for work.

            I want to tell her  I’m working  because the alternative is to give up, to lie in  bed and  die.  I want to demonstrate that one s petty problems  can be   gracefully and gratefully ignored.

I haunt two worlds.  I have no idea how long this will last.  And  by “this” I refer to symptoms, but also to life itself.

            I think of  Emilio Zapada, the Mexican revolutionary.

            "It’s better to die on your feet than live on your knees.”

            But really, what choice to I have?