19,200

Nineteen thousand, two hundred. Jesus Christ.  Now what?

         We recently decided to reduce testing. We were to forgo scans and blood work unless necessary. We felt liberated in our decision. We would stop sweating the small stuff and just enjoy our limited days.

         It’s not that simple. We decided I would continue receiving IvIG,  a $5,000-dollar, monthly infusion, that lessens infection risk.   Unfortunately, I need  blood work  before receiving IvIG. Rules are rules.

         Of the 33 blood tests the Farber ran, 32 were fine. The 33^rd was my white count. It should be around 5. Mine came back 19.2 yesterday.

Shit. We could ignore the result. Ted my oncologist suggested as much, hold work- up and repeat the test in a week.

         Now, 19.2 is high.  Life threatening infection high.  But if so, where was the infection?  I am taking high dose steroids, they raise the white count. I was just hospitalized with pneumonia so, we decided a chest X ray would be non-invasive and helpful. The X ray blandly reported “resolving pneumonia.”  

         As a hematologist, I see 19.2 and think Leukemia. Specially, Chronic myelogenous leukemia.  A pill now exists to treat  CML.  I don’t think I have CML.  Any hematologist would tell you an increased neutrophil count without anemia, a left shift, early forms, or nucleated red cells is probably a stress reaction, from infection ,most likely.  Flow cytometry would make the diagnosis.  Flow is another   $5,000 test.

         So, what to do?  I am upset when Ted says he is, “open to suggestions” about next step.  He would not be saying this if I weren’t a physician. Doctor, heal thyself. Cyn, who didn’t even come to Boston, calls Sam, my pulmonologist.  He recommended I start two new antibiotics.

         And then I realize I am not treating myself to get better, I’m treating myself for a more comfortable death.  My last  near demise, from elevated carbon dioxide, would have been a good passing.  If I do have a lung infection now, holding treatment may result in the same lovely drifting away. On the other hand, holding treatment might not be the good death but could sentence me to a dark, chronic care ward, where I would have to beg a loved one to kill me.

         What if this is leukemia?  If I don’t treat it, I will develop an infection, or enter a “blast crisis” in which large sticky leukemia cells   form multiple blood clots and stokes. That’s no way to die, either.  I bitterly remember the med school joke/saying:

         "Pneumonia is an old man’s best friend”

         I was a hematologist, I have seen the results of “life prolonging therapy”  

         There is an old Jewish saying “He was so sick he would have to rally to die”. This appears to be my situation.  I am an airplane pilot and we are out of fuel. We will undoubtedly crash. I should attempt a smooth landing (death by CO2 narcosis). Not treating my pneumonia may result in a painful, lonely, angst ridden ride.

         I try to discuss all this with Cyn, but it is brain numbingly sad and complex.  On some days, I feel better off dead. This once healthy body now struggles to walk half a block.  On the other hand, we had a lovely dinner with Abby and Sam last night, that was worth hanging around for. And I can picture Cyn telling me “Your weight is up! Your endurance is improving!”   “Don’t die,” she says, after telling me it would be OK to leave.

         As cousin Larry and therapist Mitch always say, “you never know what the future brings."  In the end, it will be decided for me.  For now, all I want is a life with minimal pain, occasional moments of joy, and to die with peace. 

         Or so I say.  I decided to start multiple antibiotics to treat what is most likely a recurrent pneumonia. I forced myself to attend outpatient physical therapy today, using a cane to walk the 1,000 feet from car to care. If my white blood count doesn’t drop, I may need to consider searching for the cause, not necessarily to get better but to  better aim the crashing plane for the runway that suddenly appears below.

Modern Romance

Another brush with death or, as we call it, Monday.

First, a confession. We are at a medical - ski conference in Utah. “Jesus," I hear you cry, “He’s whining about being unable to cross a room and now he’s at some swank resort in Utah?" In my defense, shut up. Look, we booked this “conference” six months ago, when I was still alive. Cyn deserves this trip.  She was anticipating a break from the daily drudge. I had two choices. I could stay in West Hartford, alone but for TV and trips for donuts with L. My other option was to travel to Utah, attend conferences with Cyn and play with my doctor friends.

Mounting a trip in my condition resembles planning the D Day invasion, but with more complaining. We mailed my enteral feedings to the hotel, had American Airlines wheelchair me across various airports, and arranged for portable oxygen. Park city is at 7000 feet. I saw my pulmonary doctor, Sam, who said I could go if I brought my own oxygen in case of an emergency.

We arrived at Salt Lake City, despite my vow to shun red states until the national nightmare ends. Unhappily, Colorado’s Telluride is at 10,000 feet. My personal dead zone.

         I thought I might occasionally need extra oxygen. Unhappily, I have had to use the oxygen constantly. Yesterday, I was reading in bed and the oxygen generator died. Shit. Now I die again.

Cyn is happily skiing somewhere. I am alone in our hotel room. Do I bother her? I figure I have 60 minutes before passing out. I don’t want to annoy her,

I wait. I wait and wait. I finally call Cyn when I decide she has enough time to return before I pass out. I could have called 911 but that would result in a hospital stay. “I am on my way,” she says, clearly disappointed. Suddenly the oxygen machine restarts. I am safe. I call and urge her to remain on the mountain to ski little longer. She happily complies.

I have avoided discussing Cynthia in my blogs, I want to preserve her privacy in a difficult time.  The disease has altered our relationship. I’ve mentioned my wild, so-far undying gratitude. But we have changed.  First, we can’t have any sort of angry, door slamming argument. We haven’t had a history of domestic turbulence in the past, but I no longer have the option of slamming the door and driving off into the night. I would survive about 12 hours without medical intervention. Most of my supplies are at home.  I’d die in about three days away from Cyn, who has developed a sixth sense when my sugar is 23 and I am about to lapse into hypoglycemic coma.

So, we cannot fight.  I have become “super beta.”

          In the past, if Cyn provoked me, I’d have the option to escalate the argument. Now, provocation is futile, one must never bite the hand that feeds my G tube. 

         As is usually the case, most marital arguments begin over simple silly issues, a forgotten appointment or a broken glass without sufficient clean up. I’ve lapsed into a vaguely supercilious demeanor, in which my apologies are followed by backing down.  I have become Canada.

         We keep hoping I will improve. Anything is possible but I’m starting to worry Cyn may be stranded with a cripple.  I want to be a pleasant life partner. I owe her my life, many times over but that gratitude is robbing us of one important aspect of our marriage, conflict.  Conflict is that frisson of tension that keeps us on our toes and adds energy to conversation, which is 99.5% of any good marriage. 

         When we married, I loved Cyn’s strong will. She is her litigator father’s daughter   I also know she doesn’t care for my new passive behavior.  I should grow a pair, I guess, but first I’d need to grow a new pair of lungs, and a suit of healthy skin. Until that time, I’ll stand down.

L

The past is prologue

         I was an oncologist in the mid 1990s.  My days were filled with drama, but the occasional 48 hour work day were taking their toll. Cyn worked part time. 

         We were raising three children, delightful toddlers who shared blue eyes and  weak lower esophageal sphincters . For this reason, the house smelled faintly of baby formula, the carpets were sticky and crusty, and we realized our decoration schemes had to camouflage the  beige color variation of oatmeal  and Similac vomit.

         Because of our long work days, we hired a series of Au Pairs. These young women appeared  in July and lived with us for a year. They were given room and board and a stipend. In addition, they were treated  as members of the family, with access to our car, and a spot  on our vacation travels.  The program ended after a series of  horrors, committed both by the Au Pair and the families .

         We loved the  program. The kids learned about  other cultures and the Au Pairs learned not all Americans were  fascist-crypto-neo-nazi-tubs O butter. Ah, the Clinton years. 

         Cyn and I  established vaguely parental relationship with our Au Pairs. We worried when they  were out late, or dated local West Hartford boys. I was suddenly the father of a series  of young, usually, Norwegian, women.     

         Flash forward to 2019  The  baby formula has been replaced by Two Cal HN, Dense  Protein nutrition to rebuild my  decaying  body. I spend much of  my day forcing this viscous off -white liquid down my G tube and into my stomach. I spill a little, so the house once again has that   faintly sweet sticky  vanilla scent and  the carpeting  beneath my “ feeding chair” has developed  a nostalgic crust.

         I am well into my second childhood.  I am unable to lift more than five pounds, I can’t stay awake past 7:30 or so and, although I am starting to drive again, my reflexes are a little slow. The GVHD has stiffened my joints and muscles, getting dressed is a 20-minute production. Socks? Forgetaboutit.

         Enter L.  L. is. Twenty something college student. She has become my au Pair.  She treats me with the same amused condescension   I once reserved for my Au Pairs   Karma, is, in fact, a bitch.   She texts Cyn about my mood. ( I’m worried about Steven. He is particularly dark today)

         I am grateful for her presence.  I find our relationship disconcerting, I am certainly not her father (although her real dad is one year younger than I). I am her charge. I’m certainly not her peer, I’m a creepy, creaky  old man.  I try to connect though music, but she doesn’t know about the Beatles, whose music, I realize in horror, is 55 years old.  Music written 55 years before birth included “Give my Regards to Broadway” I am horribly old.

She has no knowledge of Steely Dan, so when I quote them:

         Hey 19, that's ‘retha Franklin’

She doesn’t remember the queen of soul

         Hard times have fallen us soul survivors

She thinks I’m crazy but I’m just growing old

she gives me a blank stare

         Thank god for  bicycle spin  classes  where contemporary music is played  so I have some idea of the current music scene. Taylor swift is still a thing. I have that peculiarity  old men share, an incredulous  anger that young people have no idea of what good music is. How  can anyone exist  not knowing of Paul Simon’s existential "Graceland?" I finally understand the true meaning of the word “ whippersnapper.”

I am grateful for her help. I am taken aback by her bemused attitude. We both know who is in charge.  When I do particularly well at a doctor visit,   she takes me for donuts.  When we get home, she feeds me  250 ml of  enteral  feeding through my  G tube.

She plans to go to medical school.  She needs a place to stay  after she graduates  college. Cyn and I will offer her the old Au Pair  room.  I hope she doesn’t date our  next door neighbor's son. He’s three.