Beginning .. and ending ..

I can’t blog more publicly.  Most of what I expect to put here is about observing my dad’s final traverse.  We never know how long such a journey is.  It started over a year ago.  In a strange oedipal way – it was my son’s college graduation – his ascent into adulthood – that heralded my dad’s decent from patriarch to dependent.

This is normal.

Every family goes through this.

At least that’s what I keep telling myself.

Mom disagrees:  “why can’t he just get hit by a truck?” She asked me last night.  She was only half-joking.  He has gone back-and forth.  Three days ago – he could barely walk 50 feet.  He was seriously planning on taking the lethal dose of morphine he’s carried with him in recent weeks.  He needs an anti-emetic so he doesn’t vomit some of it.  But yesterday he walked around the lake.  He was overjoyed to read the recent article by Oliver Sacks.  So cool how these dying minds have fresh enthusiasm for learning.  Dad has been reading The Canon for the past few days and loves it.  He wrote a poem yesterday about a trilobite.  Extinct?  Yes.  Forgotten?  No.  They left their marks forever.  Fascinated too by the story of the Sea Squirt:

… the tunicate, or sea squirt, is a mobile hunter in its larval stage and thus has a little brain to help it find prey. But on reaching maturity and attaching itself permanently to a safe niche from which it can filter-feed on whatever passes by, the sea squirt jettisons the brain it no longer requires. “Brains are great consumers of energy,” writes Peter Atkins, a professor of chemistry at Oxford University, “and it is a good idea to get rid of your brain when you discover you have no further need of it.” — Natalie Angier; The Canon: A Whirligig Tour of the Beautiful Basics of Science

He stopped talking about the morphine.

But he doesn’t want to return to San Francisco.  He prefers Vermont.  Or Boston.  He doesn’t want to die in San Francisco.

She wants to go back.  ASAP.

This is a problem.

How to choose?

It looks like Spring outside.  Grass is greening.  It’s sunny.  Only one or two more days of Spring training and the Red Sox will be back in town.

Mom is already at the kitchen table when I come downstairs.  She’s on her iPad.  She’s found clinical trials for recurrent DLBCL.  There is one in St Louis.  There is another at Stanford.  She has a yellow pad full of notes.

She’s forgotten most of what Dr. H told us yesterday.  I shift back into doctor mode and take a piece of paper.  I draw four big boxes to capture the four big options:  a) Aggressive chemotherapy and then bone marrow transplant, b) a clinical trial, c) palliative care, d) nothing.  Each box has a rough likelihood of success or failure. Each box has a rough estimate of lifespan given success and lifespan given failure.  There is no right answer.

We go over the four boxes again with dad – and he pulls out his notes from the visit.  Names of clinical trials, names of therapeutic options.  Numbers.

Dad reminds us how much he hated the time in the hospital.  He doesn’t want that again.  At all.  Option (a) is out.  No aggressive chemotherapy.  No bone marrow transplant.  Mom pulls out her list of clinical trials.

Dad spends the rest of the day calling friends and family.  He wants to tell them himself.  By dinner time, he’s exhausted.  They all got so upset.  He’s worked hard to help them.  To work through their sadness.  As a retired psychiatrist, I suppose it comes naturally to him.  But it frustrates me that he’s so focused on their needs and not his own.  I remind him that we can call some of these folks for him.

The doc is going to call dad’s cell at 10:00 Sunday morning to talk things through.  We’ve got two more days to let it all percolate.  This shouldn’t be a rushed decision.

The News ..

The view of Boston – from the peak of MGH – was  beautiful.   2015-03-26 14.15.58The snow of Boston’s worst winter in decades had nearly melted away.   40 degrees still felt balmy, and rain was forecast for later in the afternoon.   Mom and dad were staying with friends on Beacon Hill and walked to MGH.   I had a meeting in Cambridge earlier in the afternoon, so it was a short drive across the river.  There is an ethos to MGH that I’ve never liked.  The joke, of course, is that this is “Man’s Greatest Hospital” and perhaps this is my aversion.   Self-important people who consider themselves to be better than everyone else.  What’s “better?”  If “got better grades and MCAT scores” is better – then sure – they are better.  But if “provides more coordinated, collaborative, patient-centered care” is better, these folks get a dismal score.  I’ve never felt that dad’s care here was very good.  His primary care doc for many years was here – and he always impressed me as a pompous dork.  I didn’t understand why dad kept seeing him.   Then dad spent nearly three weeks as an inpatient last December and his care was terrible: the physicians handed him off from one to another almost daily.  Nobody really took ownership of his “case.” (Isn’t it tragic that we depersonalize people by calling them “cases?”) Finally – I had to engage so we could get him discharged.  The family member who is a physician is always tough to manage, so I generally try not to tell dad’s providers that I’m a physician.  But in December – I had to piss on their fire hydrant so that they would know that I understood how crappy a job they were doing.  One doc apologized – explaining that they were shorthanded due to holiday vacations and a pregnant colleague.  “No more hospitalizations,” said dad.  He meant it.

Dad’s PET scan was two days ago.  The last course of chemotherapy was in October.  This would be when we get the news.  No cancer?  More cancer?  Some cancer?2015-03-26 12.39.21

The waiting room of an oncology office is an odd combination of hope and despair resignation.   One can feel the hope, and can see it on the faces:  “we’ll be ok.”   Yet one can also see the resignation.    The lady in the chair next to dad is helped to her feet by the effervescent medical assistant.  They know each other very well.  This isn’t the sort of place you want to be known very well.  She looks so tired.  Is that a smile or a wince?

Dad reads the newspaper.  The NCAA track and field championships are happening this week.   He knows all the names and their best times.

His appointment was for 1:30 and it’s 2:15 now.  Mom asks .. “does this mean something is wrong?  Is this bad news?  It seems so long.”   Dad rolls his eyes.  “We always wait.”   “Everything is fine.”   I almost agree.  But Have a sense that everything is not fine.  Here she comes: the medical assistant directs us to follow her back behind the door.  She seats dad in the hallway and takes his blood pressure, weight and temperature.  Mom and I clog the hallway for a moment.  Dad makes a silly joke about something.  Nobody laughs.  He’s nervous. We’re so nervous.

We wait another 20 minutes in the room.  There are only two chairs, so I sit on the exam table.  The doc arrives.  We’d never met in person but I had talked with him on the phone. He’s younger than I am but not by much.  He shakes my hand.  “Good to see you again” he says.  “We’ve never met.  I think you’ve met my brother.  I’m the good looking one.”  Nobody laughs.  I’m so nervous.

He steps back into the hallway and retrieves a chair.  We’re all sitting.  He looks at dad.  He looks at the floor.  He looks at mom.  “It’s not good.” The cancer is back.    The next 45 minutes are a blur. We see the PET scan.  It’s everywhere.  Percentages, options, alternatives, clinical trials. Dad is taking notes feverishly.  Mom is holding back the tears.  I’m listening.  I’m in “doctor” mode. Following along.  Dad is a “case.”

The doc leaves.  We are quiet.  We hug.  We are not a family that hugs.  Then we stop hugging.

When we get outside, it’s raining.  Mom didn’t remember much of what the doc had said.  I start repeating things.  Percentages, options, clinical trials.

I knew this might happen.  When dad was diagnosed, I knew that he had a 1/5 chance of cure.  We didn’t talk about that.  I never discussed the number with them.  Nor did the doc.   Until now.