Trength

Here’s a text conversation with my son last Sunday.  Yes – I was joking about Dungeons & Dragons.  He’s never played that.  “Little fella” is a joke too.  He’s 2″ taller than I am.  But he’s my little boy.  Forever.  Just like I was my dad’s boy.

I missed him too on Sunday.  It’s the quiet times that we miss him most, and Sundays have quiet times.  Mom has quiet times every day.  She misses him every day.  I know it’s so hard for her that she’s sometimes paralyzed.

I want her to “get busy” and “snap out of it.”  But I know that’s unfair.

Wikipeida: A eulogy (from εὐλογία, eulogia, Classical Greek for “praise”) is a speech or writing in praise of a person(s) or thing(s), especially one who recently died or retired or as a term of endearment.

As the eldest of three, the task/honor/responsibility/privilege has fallen to me.

How to say?  What to say?  To whom?

I think back to the funerals I’ve attended.  Not unlike commencement speeches, I remember nothing of the content.

What, then, should be my goal?  Inform and exalt?  Inspire and introspect?

“I loved my dad” isn’t the message.  But what is?

I am him.

Or at least he represents the “me” I seek to be.

The adjectives used to describe him – which may become redundant – are variants of “generous” and “kind” and “curious” and “quiet.”

And there is a guidance in these adjectives provoked by this quirky man.  The message is a paradox of influence, and it’s taken me decades to decipher.

This will be my message:  the guidance of my dad’s life – and how he had such great impact on so many people, because he didn’t seek to have great impact.

We were not ready.  How could we be.

Ready for seven hours at his side – wondering every moment if this would be his last breath.  Does he have a pulse?  Yes.  No.  Yes.   “Is that normal?”  Mom asks, as he takes a long groan.  “Is it pain? Are you sure he’s comfortable?”

It was an hour after that last breath.  About 11 PM.  We were ready to do what’s next.  There is no checklist – no owner’s manual.   I called the hospice, and the answering service lady took my contact information, dad’s time of death and our address and told me that the on-call nurse would call me back soon.  “Have a great day” she said as we hung up.  We laughed at that for a few minutes.  The things people say.  Dad would have enjoyed the humor in her comment too.

He had been getting increasingly confused in the hours before he died.  I shared this observation with him, and he disagreed.   He was indeed “all there” he insisted:  “Ask me who is in Grant’s tomb … ” he challenged me.  I complied.  “Grant!” he responded, with that silly grin of his.  He had that grin.  It said: “we share something.”

I landed at 11:50 AM and made it to their condo by 12:30.  Dad was lying down on the window seat.  Mom reading to him.  S (sister) was working on her computer in the dining room.

M (brother) arrived about 2:00 and by 3:00, dad was having trouble finishing sentences.

At 3:24, sitting in the big blue pleather chair looking East toward downtown San Francisco, he said “are we all …”

And we waited.  “Are we all what?” I asked.  He opened his eyes and smiled … Closed them again and said “Are we all sure this is a good place for me to sit for this?”

2 minutes later he sighed: “this is good.  Peaceful.  I feel good.”

His last words.

His last breath was seven hours later.  His wife and three kids with him.

He was ready.

Are we?

When we left each other at the top of the jetway, my plan was to follow in a day or two.  I reserved a flight for Monday, and another for Tuesday.  (Southwest – my favorite airline – allows cancellation without penalty.  So I often buy more than one ticket and as the date approaches, I cancel one. )

He was tired on Sunday from the trip, but sounded upbeat on Monday and was turning away visitors.  He’d been away from California for about a month.  Friends and relatives a were lining up to see him (“one last time” was the implicit modifier).  And he really didn’t like that.   He also told mom that I “really shouldn’t come rushing out to watch [him] die.”

Some of our friends and family are offended by this.  Some are not.   He doesn’t care what they think.  He finds the “last” visits to be so painful and vacuous.   One relative was going away on Wednesday for a week and wanted to come over and say goodbye.  She didn’t.

When my daughter came over last week, there were no heavy questions or long pauses reminiscing about poignant moments in years past.  She knew what he wanted – and perhaps that’s because it’s what she wanted too.  Just to be together.  Enjoy each other. No pressure to make it anything other than what it is.  She loves games  – so she brought one called trains that is easy to learn, yet requires a good strategy to win.   Dad won.  Then it was bedtime.

———-

From 3000 miles away, it sounded like this week wasn’t so much fun.  “Going for a walk” now meant only a few hundred feet.  “Nap time” was getting longer and longer.

I struggled with what to do.  Stay home?  Go?  When?  I didn’t want to be like “one of them” – who would threaten to descend on dad – leaning forward – savoring the last visit.  Yet I also felt compelled to ignore his request to stay away.  Yesterday,  I decided that I would go today.  I told him that I was coming out for work – not just to see him.   “That’s great.  I look forward to seeing you.”  He seemed relieved.  Should I have decided sooner?

And then he called me at 1 AM.  I saw his number on caller ID and worried that it was mom – calling me about some urgent event.  I was still awake – finishing desk work and packing. He seemed not to know what time it was.  He described his day – which sucked.  “One of my worst.”   His speech was slurred, and he was confused.  he had awakened at about 4 AM the previous night shaking uncontrollably.  Mom had reported that he was shivering, but dad’s description didn’t include a cold sensation.  “My muscles are contracting uncontrollably and I have back pain like I did in March.  It’s definitely the neurotoxicity from the chemotherapy I got last Summer.”  He explained in the detail the mechanism of the neurotoxicity, which medications caused it, how his physicians downplayed the likelihood that it would happen – and the severity of the symptoms.  “And that Dr K .. wow .. he didn’t have time to listen to me.  He was always talking.  Never listening.  I’m glad we fired him and moved to Dr. S.”   Yes.  Dad is angry at doctors.  Most of them don’t listen.

I listened to him for about 20 minutes – verbally nodding on occasion – until he declared that he was “talked out.”  He was slurring his speech, but speaking rapidly – and with a sense of urgency I hadn’t heard from him in – well – months – since the last time his calcium level was high.  That time, we rushed him to the hospital and he was back to normal within 12 hours.

He knew who he was.  He knew who I was.  He knew when he was.  But he wasn’t really himself.   His anger at the oncologists was palpable – and bubbling to the top. I had a sense that this is the monologue always running in that mind of this – and it’s so rarely allowed to escape.

Peace has eluded him for so long.    I had a flash of a memory from 40 years ago when my grandfather – his dad – reflected to me that the only time he found true peace was at night – as he got into bed – reading the newspaper before he went to sleep.  I have an image of this – his big feet protruding beyond the covers – and the San Francisco examiner – which was published in the afternoon – spread open in front of his massive bald head – with big Dick Tracy glasses perched on his nose.  It’s possible that I never really witnessed such an event; this image was concocted from his narrative.  Yet it remains an image of peace to me.  Dad seems to find peace in writing, and teaching, and learning.  He read the New Yorker last weekend cover to cover, and then re-told the details of the nonfiction articles to me.

—

So now I’m in flight – half way to California.  I called my sister and asked her to stay with them last night after he called me. She’d glad she did.  He fell once trying to get back into bed after going pee.  He thought she was mom helping him back into bed.  She didn’t correct him.  I’ll take over when I land.

Here goes …

The plan was to return to the West Coast on Saturday.  I wasn’t sure he would make it.  Every day – he seemed a bit weaker.  The nurse from hospice came Thursday.  Most of the conversation with her was about diarrhea.  There were a few “accidents” in the previous few days and that was humiliating.  This is the “end-of-life” crap (pun intended) that he didn’t want to be a part of.  He did the laundry himself.  Didn’t want anyone else to participate.  The nurse did her best to add some value:  she advised keeping a food diary to track what “worked” and what didn’t work. Mom fetched a little notebook from Walgreens and on Friday she opened it to see how much he had written.  Nothing.

The social worker was supposed to arrive @ some point on Friday but that never happened.  As we were driving back from the sports club event, dad started talking about getting Fish-and-Chips for lunch.  We looked for it at a few places in Waltham and Newton and found nothing.  The local deli was closed (early shabbat?) and so we went home and had something else.   I didn’t think the Fish-and-Chips was very important so I let it go.

Saturday.  The flight to SFO left BOS at 2:48 so we planned on leaving home about Noon.  Dad got up about 11:00.  He hadn’t slept well.  Nor had I.  Mom looked pretty crappy too.  We all knew he was leaving our home – the place we had lived since 1975 – forever.  We didn’t say it.  We didn’t say many things.  But it hung over our every moment that day.   He seemed so groggy.  I asked how he felt.  “Not good.  I woke up at 6 AM and took a lorazepam so I could get some more rest before the flight.  I don’t think it’s gone yet.”  I was relieved.   I had been worried that the calcium was rising.  Do I pull the “emergency brake” and stop the trip to SF?   Some tea and an hour later – he was much less groggy, but he still had a look on his face that is so hard to describe.  Mouth open, eyes squinting a bit:  it looked like a grimace – or a smile – or perhaps a grimace trying to be a smile.  It’s how I feel when I’m at mile 22 of a marathon.  I’ve made it so far – but the finish line isn’t in sight.  And it hurts now.

Driving to the airport – he asked for my advice.  His brother had written him a long e-mail with loquacious details about his own medical problems (which – seemed quite trivial to us) and then at the end of the e-mail asked dad if he was “hanging in there …”  Dad thought it was especially insensitive of his brother to send such an egocentric message – capped off with such a cavalier comment.  “What does he mean by that?  I’ll die any day now! – No – I’m not hanging in there!”  “What an asshole.”

An asshole whose brother is dying and he doesn’t know what to say.  Or maybe he’s not an asshole?

I suggested he be generous – express some empathy for his medical problem.  “Ask if he’s hanging in there.” I smiled and looked over at him in the passenger seat.  Snarky grin – a real grin – and that spark in his eye I hadn’t seen in days.  “Too funny.  I will do just that.”  And so he did.

The flight was delayed, and I was able to get a gate pass and join them in the boarding area for a few hours.  I went to get some food and brought back some things I thought he would like.  He nibbled at the crackers .. and had a bite of turkey sandwich.  “What I’d really like is some Fish-and-Chips.”

And so I had a mission:  find in Logan Airport what I could not find in suburbia. Twelve gates and $22 later: mission accomplished.  I suspect he’d been thinking about it for days.  “Fish-and-chips one last time.”  I didn’t ask about the significance.  Maybe when he had come to Boston for college in 1954, it was his first meal.  That’s a good story.  I’ll stick with it … and so … it would be his last meal in Boston.

He ate almost half of the fish – and only a few fries – before folding the cover closed with a satisfied grin.  “I think I’ll take a break.”  We both knew what that meant.  I wanted to congratulate him as would the parent of a finicky four year old. “Good job! You ate so well!”

Two hours later, after we tearlessly hugged at the entry ramp, he handed me the remainder.  “I won’t eat this on the plane.  You take it.”  And down the ramp he went – refusing the wheelchair.  “I’ll see you in a few days .. ” I said.  And I will.

Driving back to their house – so quiet and empty – the Fish-and-Chips sat in the passenger seat.  I picked at it as I cried.  I let the sadness come.  Finally.

It was important for dad to go to the gym today.  He was the navigator as I drove through unfamiliar streets – despite their proximity to the town where I grew up.  I asked why he chose this gym (it’s about 25 minutes from the house – on the other side of the tracks) over something closer.  He described the trees.  “I can swim and look out the big windows and watch the trees.  It’s like I’m outside.”

So we got there and dad asked if he could please cancel his membership. The giant twentysomething (muscles far too big for his size “M” shirt) had to get the manager, and the manager asked why.  “I’m moving to California and I’ve enjoyed my time here very much.  I’ve been a member for years and I thank you so much for the great experiences I’ve had here.  It’s been great.”  Butch (not-his-real-name) nodded kindly.  He must have wondered how this tiny man – barely 100 lbs – with a shuffling gait – could exercise at all. “After the 30 day required cancellation period, your membership will end on September 6th.  We’ll still need to charge you for August and the first six days of September.”   I could see dad think about responding with displeasure about the 30 day window that’s probably in some fine print in the membership agreement.  “Thank you very much,” He said .. with a kind smile.  As we walked into the parking lot, he remarked that there’s no reason to waste any energy on complaining about little things.  I agreed.

We took the long way home through Waltham. Stopped at a light, three young women walked in front of the car in the crosswalk.  One was walking in front of the other two.  She was a bit taller, in shorts and flip-flops and dad asked me if I remembered the John Updike story A&P.  I nodded.  “Queenie?” He asked and nodded toward the leader.  I smiled.  Green light.  Go.

So long as he’s stable, mom and dad are going to San Francisco tomorrow.  I called the hospice there and the hospice here and the palliative care doc there .. to get things lined up for a hospice-to-hospice handoff.  I think it’ll work well.  Hospice people “get it.”  They’re nice.  But not salesperson nice.  They’re “real” nice.

Dr S, the oncologist in San Francisco is salesperson nice.

My daughter M joined us for dinner at the Chinese restaurant that they used to go to all of the time. He had a bowl of egg drop soup.  The couple behind him were on their first date.  Dad enjoyed listening to their conversation and then re-telling it after they left. “No second date” he predicted.

Dinner was surreal.  As dad went to the rest room – mom had a look on her face.  “It’s so hard to sit here – and be normal – have a normal meal – and know that we’ll never have this again.  This is our last dinner at this place.  We must have eaten here a hundred times in the last forty years.  Our last night here in Boston together.  The last .. ”

We’re “last-ing” now.

Of course we are.  I agreed with mom.  And yet I’m still trying to let the moments be what they are, without trying too hard to record them.  Or regret them, or lament them.  I’m not feeling much sadness.  Happiness to be here.  Serenity.  Understanding.  Maybe that’s a way to push back the sadness for me.  I don’t want to waste the good time on it.

Back at the house, M had brought a game in from her car and dad won. It was fun and engaging and happy.  And then it was over.

And it’s ok for things to end. Even good things.

Dad said goodnight.   My sister will catch them at the airport tomorrow in San Francisco.   Not sure when I’ll follow. Soon.

He’s made the decision public.  Well .. not PUBLIC but M called me last night on speakerphone with mom and dad.  He wants it to be clear.  He asked me if I wanted it in writing and I said “no.”

“If I get a headache or something, of course I’ll take an aspirin or tylenol … but if I get an infection or high calcium or anything else that might take me to the end, I don’t want it treated.”   His advance directives essentially say this, but there are nuances in the advance directives that leave some options open.   He’s using MyDirectives.com to maintain and manage his advance directives (me too – and so should you – it’s free and easy).

We set up the advance directives about six months ago.  That was about nine months from his diagnosis.  I was surprised that his physicians didn’t encourage him to do this – but none of them even mentioned it.  So I did.  And again.  And again.  Finally, I sat down with both mom and dad and helped them do it.  Took about 10 minutes with MyDirectives and dad was so happy to have it done.

When he went to get the stent placed @ UCSF in early July, he waved his iPhone at the admissions clerk and offered her his directives to be put in the chart.  She looked at him like he had three heads.  He offered to e-mail it to her and she refused – citing HIPAA.  (Yes – this is silly  – HIPAA certainly doesn’t prevent her from accepting an e-mail, but this is what she’s been told by her manager and we weren’t going to re-educate her.)   It’s 2015 and there is no way to get the PDF from his phone into the Epic EHR!  Dad got frustrated.  He really wanted to be sure that the directives were in the chart.  He didn’t want to end up in the ICU if something went amiss. Fortunately, I had my laptop, which had a .pdf version of dad’s directives on it, and UCSF does have free wifi for patients and families.  Using an e-fax account, I faxed the document to the admissions clerk, who then scanned it into his record.  Sigh.  Interoperability?  Not yet.  10 minutes later, from digital to analog to paper and back to digital, the directives were in the EHR.

The next day, I e-mailed a colleague at MyDirectives and suggested they add a “fax” feature.  Unfortunately, this is probably a necessary feature for another few years.

I didn’t get up so early as I would have liked yesterday.   It was already 80 degrees by the time I left for my run.  I took a short-cut and made it an even 13.2 miles – up and down the “heartbreak hill” marathon route.  There isn’t enough water along the route.  Hundreds of runners up and down Commonwealth Avenue.  No water fountains – even in public spaces like Newton City Hall.  I found one near a baseball field by the reservoir, but there really should be more.  I thought that a “Running Water” crowdsourced mobile app would be fun to make.  People would identify public water locations on a map, so we could plan running routes around them.  My Simple water bottle is wonderful, but it only holds 13 ounces – enough for 5-6 miles of hot city running.

When I got back, dad was playing cards with A (my wife) and M (my brother).  M landed at 5 AM from San Francisco but looked pretty chipper.  Dad looked weak and pale but was enjoying the card game.  He wanted to go swimming at the sports club, so M brought him over, while I brought mom to the supermarket.  I needed to get her out of the house – to do something “normal.”  The fridge was full of rotting food that (my sister) S had bought the previous week.

I was trying to move through the market efficiently as the dog was in the car and he didn’t want to be cooked.  Mom paused at the avocados to choose one.  I got mushrooms, asparagus, tomatoes,  peppers and lettuce and then looked around for mom.  She was still trying to choose an avocado.

I didn’t realize how global her paralysis had become.  I fought the urge to just choose one for her, felt my impatience grow and then subside as I let my empathy bubble back up to the top.  She chose an avocado.

We rewarded the dog for his brief stint in the car with a diversion to the dog park, where he romped gleefully with new friends large and small.  I asked mom what she understood about dad’s “hypercalcemia” plan, and whether they had discussed it yet with the hospice folks.  His idea is that, untreated, the calcium will rise rapidly at some point soon, and he’ll smoothly and quietly slip into a coma and then away ..

But of course there is no certainty.  No certainty that the calcium will rise quickly.  No certainty that it won’t rise to 14 or 15 (at which point he’ll be confused but not comatose) and sit there for days or weeks.  No certainty that it will happen this week .. or next .. or next month.

I asked him what his plan was and he told me that he hadn’t yet discussed it with mom.  He smiled at me with the wry smile that says so much.  “I know your plan, ” I said.  “No more zoledronate.”  The wry smile again.  “I think Tom Brady did it.  He’s lying about deflategate.”   I told him to talk to mom.

I’m worried that in an hour, a day, a week .. his calcium will start to rise and we won’t have a plan.  So we’ll have confused dad and no plan.  Last time his calcium went up, I knew that he wanted us to treat it so it was easy.  We got him to the hospital and he was better in 12 hrs.

As Atul Gawande wrote in his book, making these decisions isn’t hard for family, physicians, and others.  Really.  These decisions are easy.  But we need to know where an individual’s priorities lie.  Dad doesn’t want to be remembered as a weak, dying man.  That’s VERY important to him.  Mom knows this, but they’re still not talking about it.  The hospice social worker was there last Friday.  It really opened things up.  I called her today and asked her to “check in” with them.  Maybe she can provoke some more communication so they’re not still waiting for the “perfect time” to talk to each other.

Last night after dinner, mom and A took a walk. We’re in Boston now. Dad went upstairs to rest his belly. I helped an old friend move his website to a new server.  A normal evening.

Dad ate a BIG dinner: we had corn and squash from the farmer’s market on the turnpike and there was left over fish that their friends Larry and Phyllis brought over the night before.

My sister had just left for SF in the morning. Brother on his way tonight. We don’t want to leave them alone.  A needs to be at work in Albany on Monday. I’ll bring her home.  Then I think I’ll come back.

Red Sox game tomorrow?   Maybe!

Hospice came twice. Lot of medicine in the fridge. “Just in case,” says mom as she shakes the giant baggie. A new one just arrived. I open it. Pancreatic enzyme.

Dad is in good spirits. He is a bit constipated. We all talk about the squatty potty.  A bought me one for my birthday.  I have become a fan.   (“Something you didn’t have.”)  I order one for dad on Amazon.  He is skeptical.  It will be here in two days. We marvel.  The dog lies at his feet.  “He knows,” I tell myself.  Dad rubs his tummy.   Dogs love tummy rubs.

His plan is to let the calcium take him.

Its been nearly 3 weeks since his last zoledronate dose. The last one lasted about 3 weeks.

I don’t think he’s planning on another.

His speech isn’t slurring yet.  He will get confused and then very tired.  Tomorrow? Another week?  Two? Impossible to know.  And he may change his mind and have another dose. That would get them back to SF.

The CBD stents will occlude again soon too. When?  Days?  Weeks?  Plastic stents will occlude again in 2 – 4 months.  Dad says that he’ll not get it replaced.  I think to myself that cholangitis won’t be a fun way for him to go.   The CBD stents were placed because tumors were occluding the common bile duct.  Here’s the drawing that the GI doc did.  Without the stents, the common bile duct would occlude, which would eventually lead to cholangitis.

Maybe Red Sox tomorrow. That would be fun.

It’s silly to think about “the last” dinner, red Sox game, book to read.  I thought we would do that but we don’t.  We are present.  Now. The same.  My jokes remain barely appreciated.  His aren’t funny either.  Mom laughs at her own stories.  Too much.  She is so scared.

Carol came tonight.  Her husband died a month ago. She hugged dad too hard when she left.  She wonders if it’s the last.

We went to bed.  But now I’m awake.  Long run for me in the AM.  15 miles?  We’ll see.  9 weeks until the Albany marathon.  And then another 3 weeks to NYC marathon.  Its on his birthday.  He would be 79.  I sent an email earlier this week asking him to be there.  He didn’t reply. Maybe he didn’t see it. He doesn’t read all of his e-mail these days.  Maybe he did. I’ll ask.