unfinishedthinking

My aunts were very prolific.  Aunt June had 13 kids.  Aunt Celie had 12.  Aunt May had 10.  Aunt Kitty had 8.  Aunts Tine and Louise had 3 each.  My mom had 2;  ahe always regretted not having more.  (My dad, sister and I were happy with the foursome.) Aunts Frances and Madeline had more peaceful lives—their husbands were the only children they had to deal with.

 Around the same time that I was beginning my hospice program, my mom was being moved into a more advanced dementia unit at her retirement home.  I couldn’t have many visitors, so in lieu of coming to see me, we asked my many cousins to drop in on mom.  They have been amazing.  It’s a rare day that Mom doesn’t have any visitors.  She may not remember the visits, but I’m sure that’s why her mood has been so good lately.  I’ve never been one for family gatherings or alumni reunions or parties of any kind, but Mom is a funny, sociable party animal.  She likes people and people like her.

 Back in January we thought I had only two weeks to live.  The bonus time I’m getting now allows me to catch up with some of my relatives.  My sister Patti invited our Richmond area cousins to her place on Sunday.

 I wasn’t feeling good that day.  Usually I plan to have no more than one or two guests a day so I can cancel when I’m not feeling great.  But I definitely didn’t want to cancel on 25 or 30 people.

 I’m glad I didn’t.  I was a little iffy for the first half hour, but after that–and after a hit of morphine–everything was fine. It was good seeing everyone.   There were laughs and there were tears.  (I’m not the only one with cancer.)

A number of my cousins follow this blog, but they were all nice enough not to bring up my comments on religion.  My guess is, I would have heard some dissenting opinions in our longtime Catholic clan.  In fact, Patti tells me that after Ginny and I left one of my cousins asked if she thought it would be OK to send me a book proving that there’s a heaven.  I’m actually building a nice little bookshelf of religious-themed works given to me by concerned friends and family members.  There’s even one book from a total stranger.   A couple of these books have been kind of interesting.  They’re not converting me, but they do make obvious how easy it is to prove something to someone who already believes—and how hard it is to change opinions.

 I always appreciate the thoughtfulness of the givers.  And I wonder.  Do religious people get copies of Christopher Hitchens books from concerned atheists?

       A wise and precious friend is going through a cancer marathon of his own right now.  Although he points out that his odds of recovery are significantly better than mine, he has a couple of challenges I don’t have.  To begin with, one of his side effects is pain.  It’s not crippling, but it is constant and nagging enough that it makes it difficult for him to be distracted from his condition.  He also has a complicated family history that makes it harder for him to shrug off the gloomiest thoughts and possibilities.  These serve as more reminders of how lucky I am to be ADHD:  I can’t concentrate on anything for very long.

       When cancer patients talk candidly about their emotions, you hear about fear, frustration, confusion, anxiety, anger–the things you expect.  There are surprisingly good feelings too.  Friendships feel better.  The clichés about life feeling more valuable and awesome when your days are numbered are true.    I know I’ve felt all those things, good and bad.

      You also hear a lot about isolation and worry that “nobody understands what I’m going through.”  I don’t have that problem.  I think this blog has helped me tremendously with that.  For a long time I had trouble putting my finger on why this public display of me feels OK when it could or should feel uncomfortably narcissistic or masochistic.

       As I wrote in an earlier posting, cancer isn’t interesting to me.  I can’t even remember day to day what kind of lung cancer I have.  But dying is interesting–it’s a surprisingly good topic of conversation.  You quickly get to core beliefs.  Science doesn’t offer many hard and fast answers to the questions raised.  You can see why people turn to religious notions of heaven.  Is there something else?  Or is there nothing else?

      I spend most of my days now in bed or on my computer or watching tv or playing Bananagrams with Ginny.  (She’s really, really good.)  I have Ginny to talk to all the time.  But I also have another outlet, my blog.  Sending this message out means hundreds of other people are sharing this stage of my life with me.  I’m not isolated.  In fact, I’ve never been so surrounded by good people.  I haven’t got cancer or death figured out yet (this is, after all, unfinished thinking), but I’m enjoying the exploration.

       I know some people keep things like this bottled up.  They don’t want to talk about their disease or about dying.  Maybe that’s right for them.  I just hope they know that if they do decide to reach out, some wonderful people will be there to hold their hands.   At death we’re all alone.  But we don’t have to be alone in the time leading up to it.

Ginny’s tumors have shrunk another 20%.  Bam!

Yesterday I couldn’t spell Wednesday.

I knew the spelling of Wednesday was out of sync with the pronunciation of Wednesday, but for the life of me, I couldn’t remember how to spell it.  Usually when I’m at the keyboard, I don’t even think about something like that; my fingers know how to type it out.  This time I had to use a dictionary.  My whole life I’ve had a mental block about some words.  For example I’m never sure I’ve got the word embarrass right.  But until yesterday, I’ve never had a problem with the word Wednesday. 

When you know you have tumors in your brain, something like that is a little freaky and more than a little frustrating.  Is it a momentary brain fart or is it the beginning of a new stage of my illness?   I’ve never been able to remember names or faces: is it like that or is it something new?  I’ve gone blank on simple things before, why does it bother me this time?

My nurse visited yesterday.  To her ongoing surprise, I’m not showing any physical signs of deterioration.  In fact, my numbers have been steady since we started this hospice thing back in January.  So I’m determined not to let the Wednesday problem get to me.

Although I will say, the word deterioration looks funny to me.  Better look it up.

The doctor told her this morning she’s in complete remission.  The tumors are still there, they’ve shrunk in size–and there’s absolutely no activity. 

She’ll continue on the chemo program, of course, but I’m one happy camper.

I’m doing things I thought I’d never do again.  Important things, in the scheme of things.  I’ve seen and spent the night in Ginny’s new part-time home in Beacon, New York.  The property itself—Jason and Carley’s property—is a huge undertaking.  The two-acre compound includes a huge warehouse and a 10-room schoolhouse that’s bigger than I’d imagined.  The major house includes four two-bedroom living units.  That means four kitchens, four good-sized living and dining rooms, etc.  Taking care of all this is a job that’ll never be finished.  Like his father, Jason’s disorderly.  There are always piles of things that haven’t been put away. In some ways he’s worse than me, in some ways better: he’s much better at finding something in the chaos he creates.  I have no idea how he does it, but in the middle of massive disorganization he can sometimes be somehow organized.  Now he’s got plenty of room to spread stuff out.  We’ll see what happens. 

            Ginny’s big, third-story loft space, on the other hand, is cool and well-lit and manageable.    She’ll have fun fixing that up.

            Carley’s bakery is, as promised, charming and delicious.  It was good to see the steady Saturday morning traffic at the shop.  Lots of happy customers.  Carley let me steal a whole pile of New Yorkers I’d missed while I’ve been confined.  I’m a happy man.

            I’m also feeling like a surprisingly healthy man.  The stairs knocked it out of me, but I made it up to the third floor and down to the basement.  Ginny’s pointing out to people that most weeks now are better than the weeks a month ago.  They’re practically…heaven-sent.  (Don’t get me started.)

            When we were leaving, Ella gave me three goodbye hugs; usually she teases that she doesn’t want to give me any. She bosses Patti and Ginny around a lot.  Let’s dance! Let’s put on a show! Let’s make Rice Krispy Treats!   Thankfully, she expects less of me.  She knows I take a lot of naps and she’s used to me having the damn O₂ setup, so she’ll usually gives me a pass on the more lively activities. But sometimes a girl’s gotta talk, you know?  And it’s not really talking if the people across the street can’t hear you.  So I’ve got to listen and respond (even when she doesn’t wait for the response) and I’ve got to at least watch the dance and yoga shows.  I think I’m getting off easy, but just listening to that girl is exhausting.

            Everyone should have a family like mine.

Yesterday was the best day I’ve had in a long, long time.

I woke early, walked to the market around the corner, stopped at Starbucks and brought breakfast back for Ginny, Patti and me.  A short rest–and then I was up until 2 a.m. We went up to Lincoln Square for two movies, had a quick lunch between films, came back, watched tv, Patti got us dinner, we played board games, I read and I worked on my obituary.  (More about that coming.)

Very few breathing problems.  No need for cough or nausea medicine.  Just one or two hits of morphine.  It was invigorating.  And it all came after three active days. 

Today is starting off a little slower, but it’s not bad.  I feel alive.

We talk about cancer as if we’re in a war.  We salute those who are “bravely battling the disease.”  Maybe that’s true for some people, but I’m nowhere near as macho as that.  I’m not even sure how I would fight back.  When the symptoms get bad, I retreat.  I lie on my side on my bed or couch.  If I seem brave, it’s only because I have no choice. I do try to push myself to do things sometimes when I’m  not feeling great.  The results are inconsistent, but good enough that I’ll keep doing it.

I don’t usually feel sorry for myself.  I think that’s because I have an active imagination that doesn’t often focus on the cancer.  To me the cancer is boring.  The pills, the treatments, the routines, the scans, the numbers–I can’t concentrate on them any more than I can concentrate on the details of a legal contract or an insurance form.  To me this is uninteresting stuff that’s best left to the technicians.  (Thank God for Ginny: on my own I’d screw up the regimen at every juncture. )

Dying, on the other hand, is endlessly interesting.  Partly because it’s scary and mysterious, of course, but it’s more than that.  if nothing else, we are the heroes of our own lives, and we want our lives to have meaning.  We want to know how the story turns out.  De Gaulle is credited with saying that the cemeteries are full of irreplaceable men.  There’s supposed to be irony in that thought, but I don’t think there should be.  Men and women–you and i–are literally irreplaceable.   Future generations may succeed us, but  they won’t leave the same footprints.  If Shakespeare had died young, would someone else have written Hamlet or Lear?  Would the world be different today if there had been no Washington, Jefferson, Adams and Franklin?  Would advertising have been revolutionized without a handful of Doyle Dane Bernbach leaders in the ’60s?  Would technology be different today without the singular contributions of Gates, Jobs, Paige and Zuckerberg?  Most of our personal contributions to the world are played out on much smaller stages, but if we can imagine that the flap of a butterfly’s wing in Brazil can give birth to a tornado in Texas, who knows what differences we make when we raise our voices, wave our arms and make our impact.  For most of us, a tally of our arm-waving will be taken at our death.  What will be said?  What boxes will be checked? Was I a good father?  A hard worker?  A trustworthy friend? A joyful comic?  A selfless caregiver?  An encouraging mentor?  A smart student?  An inspiring teacher? A contributing citizen.

What will I leave behind?  A happy family?  A prosperous business? A work of art?  An idea?  A plan?  Laughter?  Tears? 

I’ve often quoted a sentimental old Anthony Newley song: 

... I long to live in someone’s memory…
    And I long to live upon a hill…
     And it doesn’t matter that I know I never will.
     But I raise my glass to the good things in life.
     We are not here for long but there’s time for a song and some wine.
     And as time runs away…I will look back and say
     That the good things in life were all mine.”

Back in ’98 when I first drove back from Johns Hopkins with my diagnosis, this was the song I thought of as I approached our driveway on the top of Hill Drive.  I dreaded telling Ginny, whose mother was dying, whose son had AIDS, that her husband had an 86% chance of dying of lung cancer within five years.  I reminded myself then how lucky I was that I lived on a hill–and that I’d had an abundance of the good things in life.

The big gift I’ve been given the past 15 years is the confirmation that I will definitely live in the memory of some wonderful people.  (I’ve been tempted to compare the world after I die to the world before I was born:  I’m clearly not needed either time.  The world spins fine with or without me.  But death isn’t the end of me. I’ll live in people’s hearts the very same way Preston and my dad live in my heart.  It’s not all that different from living on the hill.

Maybe that’s why I’m actually enjoying writing my obituary.  It’s the obituary Susan Lueke will post on this blog when I’ve died.  Since the readers will have a little familiarity with me, I don’t feel a need to create a timeline or resume.  I’ll just use the occasion of “the final posting” to clear up a few little things and to let you all know you won’t need to be checking back in here.

I’m hoping you won’t see that obituary for a long, long time.