The Questionnaire

Sure, I would not mind saving 500 dollars. Dan wants to join the Cornell Ski team.   Abby will need help this winter as she teaches 4 year olds to ski and Jeff… It’s surprising how many incidentals one generates on one’s meteoric ride to Master of the universe/ second year medical student. Life goes on, I am still parent of three single students who need funding, despite my daily, sundry struggles.

            It’s easy, too. The money saving, not the master of the universe thing.   I need to complete the oxymoronically named “Wellness form.” My GVHD tide is slowly receding, yet again, fading slowing under the renewed effects of Rapimmune and prednisone. I have stopped eyeing the room for potential devices of self-extinction.  I feel I am safe around sharp objects, shards of glass, beakers of Hemlock, and my sister- in- law.(1)

            To save money, I need to answer health questions and undergo a physical. In the past few years, I  have viewed maintenance health care as a   waste of time. I want to scrawl, “I have cancer!  Every day is an unexpected surprise” across every  form requesting a preventative health care check up.   I derive perverse pride from my disease.  I think of Men in Black:

“You're no longer part of the system. You are above the System. Over it. Beyond it. We're them. We're they. We are….” People fighting Cancer. 

To paraphrase Gold hat, from the treasure of the Sierra Madres, 

“Health exam? We don’t need any stinking health exams, asshole”

Preventive care?   That ship sailed 7 years ago, now I am  well into besiegement mode. My medical situation resembles the Israeli zealots barricaded on Masada, awaiting   their doom at the hands of the Romans who had surrounded their desert redoubt. Telling me to take cholesterol medication would be like telling the zealots  to wear sunblock, because nothing is worse than being tortured by the Romans except being tortured by the Romans while suffering from a bad sunburn.

            I  am slowly being  reintroduced  to  preventative medicine. Much to my chagrin,  Ted  asks about my cholesterol and blood pressure, whereas all I want to do  is shout ,  “LDL? Fuck that, tell me how to  overcome  this crippling steroid neuropathy, my mouth pain,  my blah blah blah blah.”

             I go to the wellness website. They ask a series of questions about my health,   habits and lifestyle.  I develop a headache   from  excessive eye rolling.

Exercise? They want to know  about exercise? How many calories does one burn  searching for gauze to staunch the  flow of blood from a newly opened vein  that lies under my  steroid and Coumadin weakened skin?

            I can’t see any benefit from these asinine questions. My insurance is through my work, I can’t be dropped.  Aetna must possess a voodoo doll with my face on it into which they  stick pins.  I am aware Aetna’s’ stockholders lose 5 cents in dividend income every time I receive  $10,000 worth of IVIG.

            I should not be alive. I recall a Bill Maldin   WWII cartoon.:

 I feel like a fugitive from the  law of averages.

 That’s me. Don’t ask about my bloody  blood pressure, ask about my risk of secondary malignancy  from all -out land assault that was launched against my marrow and  flesh.

            Still a cool $500 saving  just by  answering some questions .           I’m   answering questions about  stress and  alcohol when I get to the question I’ve been dreading since I signed on 31 minutes ago.   Question: Do you have Cancer?  There are 4 possible responses

 1) I am living with cancer.

  This annoys me, it’s a euphemistic way of saying  “ I am dying with cancer”

 2) I had cancer but am now cancer free

3) I never had cancer

 4) I refuse to answer.

I Can’t  answer #4… I am not proud of my disease but still,  refusing to answer  is admitting to having cancer

Monty Python, Life of Brian

“Are you a Virgin”

“I refuse to answer!”

“She’s a virgin”

Answer three  is out, because it’s a lie.  So, do  I answer  #1 or 2?  Yikes.  I probably have a few leukemia cells  kicking around inside.  They will lurk within me until I die, kept in check by my overly neurotic and aggressive donor cells.   But, it’s not an accurate assessment.  I don’t expect to die of cancer unless I  have a heart attack while participating   in the   Jimmy Farber walkathon one year, or if I get hit by the LMA bus ( Longwood area shuttle bus)  as it drops employees at the  Farber.

Yikes. A cancer survivor could become an exsurvivor  at this event.

            So, that leave us with

2) I am cancer free

This presents the most metaphysical of all the answers.  Quick Quiz:

 Cancer:   

1) A  clone of immortal cells that are resistant to treatment and often result in death

 2) Cancer:  a  state of violent  change and disruption of  one’s life.

3) A disease that will soak into your every dream, your every waking moment even if you are unaware of its presence.

4) A  disease that will  change you, your family and your future for ever  and ever .

5) Cancer: The ultimate stigma,  every time you hear about any one dying of cancer, you will mumble “There but for the grace of god go I.”

 Choice  number  two isn’t accurate either .  No one is ever free from a cancer diagnosis. No one is ever cancer free once one receives that diagnosis.

 So,  which box do I check? I check?

   5) “Yikes, don’t ask” is accurate but resembles #4.

In the end, the best answer  would be a modified  #1, which violates  the questions euphemistic  intent:

1)   I am living with, existing with, worrying about,  whining  over, obsessing about, terrified by, suffering from the side effects of,  and annoying family members over, my cancer diagnosis.   There.  Where do I check?


(  1) Yikes ! I mean no offense. In any event I have several  sisters in law.  It just seems that whenever I visit SIL  "M" the converstaion turns a bit dark, in my effort to spare Cyn endless nihilistic conversations.  To my SILs : I love you all. 
2  (2) Yikes! It's  SsIL   sorry, grammar police.

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?