Let there be songs to fill the air

We were just graced with an enchanted four days.  In every mythic tale that involves an arduous journey, there is always a moment of respite... a Lothlorian, a feast at the Round Table, an eye of the hurricane that is serene and calm.  This was that.

Roger's 60th birthday was Thursday night and we surprised him with a party intended to trump all parties, past or future.  Over the past few months I've been inviting people from all over the country to come join us, and people accepted with joy, making arrangements to fly, and drive, and carpool in for the occasion.

We met up at our friend Carol and Bill's incredibly gracious home, a house of deep cherry wood and leather divans, terraced gardens, a serene blue pool, and candles glittering softly amongst the draping bougainvillea.  The group was small but achingly and beautifully deep with history.  Many friendships in that room went back 30, 40, or more years.  Some were more recent but were of the quality that felt instantly ancient and familiar.  There was no us and them, east or west, north or south.  It was an instant eclectic tribe and the chemistry was rich with shared geographies and stories of road trips and laughter at in-jokes and rapid fire jibes at each others' expense.

Roger's college friends sat around a table and discussed various landmarks in Lawrence, Kansas, and reminisced about favorite old watering holes and discussed what landmarks have been torn down and replaced with what.  My college friends sat around another table comparing the vagaries of bus travel in South America.  Newer friends sat in and listened, while someone would give a closed caption narration of how everyone was connected ("she knew him for awhile, then they both married someone else, but then they remet at a reunion, and then they married each other...") and bits of back story to tie things up ("... so even before we dated, all our kids went to the same high school, in the same department, all three years apart... that's why everyone is talking about the teacher that got fired.")

 My months of deception were a constant source of conversation, made so much more sweet because I'm widely known as being almost pathologically honest.  ("Lies within lies, Roger," I kept intoning, with a big grin on my face,  "lies within lies.")  Roger was glowing the entire time.  I'm thinking I may have a new career track as a con artist.

There was music.  Great music.  Roger's music partner from college, the Greg Kesler of Nolan and Kesler fame, flew out from Connecticut via Wyoming.  He plays harp and guitar, and Nolan and Kesler were well known in Kansas through most of their college years. My friend from college, Brian Marshall, a bassist, came down from northern California and added his spice to the mix.  (Since upright basses are difficult to sneak into a plane, I rented him an instrument for the occasion).  When we visit Brian and his wife, Nancy, Brian plays bass and Roger plays guitar and the music is great but could really use a harmonica.  And when Nolan and Kesler play, they always bemoan the lack of an acoustic bassline.  My dream (and indeed my not so secret agenda behind the whole party), was to get the three of them in the same room just to see what happened.

In a weird wonderful alchemical way, it was a musical weddding... symbolizing the conflation of Roger's and my two worlds.  One person each from our college years, and Roger in the middle, linking the two.  And surrounding him were all his friends, old and new, all east, west, north, and south of us linked together by a common sensibility, shared across thousands of miles... the fallout of Vietnam, whispers of the summer of love, denim granny skirts, VW vans, concerts, and illusions of limitless freedom... now joined together in one moment, to celebrate Roger and how downright wonderful life can be sometimes, forty years down the line.

Nolan and Kesler played N & K favorites, from Mama Tried to Peggy Sue.  Then Brian said he'd like to pick a tune -- Van Morrison?  Bob Marley?  Bob Marley won hands down, especially amongst the kids (now the same age at which the rest of us all met each other.)  Brian started the great bass line for Stir it Up and suddenly we were all singing the stoner lyrics that anyone can remember no matter how wasted, and clapping and passing around a phantom joint -- not only in homage to Bob Marley, but in solidarity of spirit between generations... a toast to universal youth, a momentary dropping of all boundaries between young and old, now and then.

The night was magic.  It was an "Our Town" night that I would gladly relive for eternity.  The music, the laughter, the absolutely palpable love for Roger and for each other.  The grouping was perfect; everyone seemed to fit together seamlessly.  I can only hope that people had half as good a time as I did, because it was an evening I'll be reliving for years to come (unless and until we can figure out how to do it again, and soon.)

Layers of love and friendship.  So vital.  That feeling of visceral, unconditional love.  I've been getting that with my illness -- a sub-optimal way to receive and understand the power of love, but potent nonetheless.  And Roger got it at the party.  A huge chunk of visceral knowledge of our universal connectedness, and love, and roots, and support.  This is where I know my riches are stored.  I glanced across the laughing joyful room and counted my friends and my connections like a miser counts his stacks of gold.  My life is so enhanced, so magnified, so enriched, made so deeply meaningful... because of the people I am connected with.  And Roger felt it too.  Not just in that room on Thursday night, but with all the many people who couldn't be there as well.

The green links, heart to heart, sustaining and supporting and enlivening and healing.  My hope and prayer is to know this, and remember this, and honor this connection.  I need many long weekends with friends, or even long dinners, or even a long phone conversation.  I also need solitude and time by myself.  But even in those hours where I need to be alone, those friendships are there, supporting me like invisible strings, holding me up, enabling me to sag from time to time and still keep going on.

We are all growing older.  The people in that room may never all be in the same place again.  I hope to god that that isn't true, but inevitably, we will start moving to a different plane.  But... I do believe... there were people in that room that had already moved on, that graced us with their presence, and who made a brief journey from the other side to wish Roger a happy birthday as well. Roger's parents were mentioned many times.  There were friends who were missing, who were absolutely there in spirit.  The spheres expanded beyond the room, beyond geography, and very possibly beyond time.

To all of you who made it, and to all the other dear friends who were there in spirit: thank you for giving me, personally, so much joy in the planning and in the experiencing of that evening.  I fully plan to keep one memory sector saved for that night, revisiting it from time to time, remembering as we passed the torch of friendship and love and music and connection between each other and onward to the next generation.

The To-Don't List

I had a great day.  I got a ton of stuff done, stuff I'd been putting off for many months.  And I realize that not only A) did I get all of it done without a list, but B) if I'd had a list, I probably would not have gotten it done, and I would've stressed out about it all weekend.

Remember how I tricked myself into relaxing? Here's how I tricked myself into relaxing and being incredibly productive.

First, I have been paying attention to my own advice.  Despite many temptations to go out of town, or go an excursion to the beach, or make plans to do stuff, Roger and I really tried to keep the obligations down for the weekend.  We did  have a plan to go down to Orange County to see my mother today, but we did not commit to it fully until this morning, after we saw how I was feeling.  Even though it would have been good to see her, the fact that it wasn't engraved in stone kept us feeling relaxed about it until this morning, and -- lucky or not -- when I broached the subject, she said she didn't feel up to going out herself, much she'd like to see us.  By keeping it flexible until the last minute, all of us were able to make our decisions based on how we felt in real time, and no one felt compelled to go through with something that didn't feel right.

Let me digress here a moment.  The Abiline Paradox.  Anyone hear of it?  This concept comes from a video I saw as part of a work training many years ago.  It's worth a watch on You Tube.  Basically it dramatizes a situation in which a Texas family -- on a hot summer's night, with all the interpersonal dynamics that a family has -- ends up driving to Abilene, although no one (as it turns out) wanted to go at all.  They had been playing cards and the son-in-law was winning.  The father mentions something about Abilene.  The mother thinks he wants to go to Abilene and starts vigorously supporting the idea.  The daughter, wanting to keep peace in the family, goes along with it, even though she doesn't want to go.  The son-in-law, feeling guilty, says sure.  The dad thinks the mom wants to go, and they all go on to Abilene even though not one of them actually wanted to go in the first place

Plans are like that.  A plan gets made, for whatever reason.  Maybe it's a good plan.  Maybe it's a plan that you don't want to do but you think someone else wants to do, so you want to make them happy, and you go ahead with the plan.  Maybe it's a plan that everyone wanted to do at one point, but -- in the real moment -- no one wants to go forward.  Because of the politics of the situation, no one wants to undermine the plan itself, so everyone goes along with it, and usually has a terrible time in the process.

The Abilene Paradox happens a lot.  This morning, we avoided it by not make a plan way ahead of time and forcing ourselves to get into the emotional politics of backing out of going on a trip that was not going to be enjoyed by the person we were visiting.

This gave us the morning.  And, since we hadn't planned anything for after the trip to OC, it gave us the day.

We started off with a lovely lox and bagel by Peet's.  Brought the paper, had no time constraints.  We wandered up to Macys and ended up buying several much needed household goods.  Great!  One less thing to either put off (more) or squeeze into the evenings after a workday.

Came home.  Still didn't have anything planned, but knew I should continue chipping away at the taxes.  Yeah... but... I'm a creative procrastinator.  I realized that what I really actually felt like doing was getting rid of the pile of stuff that needed to be donated to Goodwill.  That is a job I've been putting off for probably over a year.  And finally, I had the precious combination of time, energy, and (most importantly) desire, to do it.  So I went into the garage and tackled the project (side note: I list everything we donate and use a cool online program called It's Deductible to calculate the value of the donation... it takes a hair more time but no auditor would ever quibble with a reasonable list and reasonable set of values... so it is well worth the few extra minutes it takes to log everything in).  In addition to getting the donations all logged, I also cleaned the garage, straightened out the bicycles, reorged some boxes... had a bite to eat... took the donations to Goodwill, and was done in less than two hours.  DONE.  After putting it off for probably close to a year.

Then I took a break.  Read a bit of the paper.  Went in and did some bookkeeping (yes, that was on my actual weekend's to-do list).  Got everything ship shape, and then had dinner with Roger out on our back patio.  Which was lovely and relaxed. And.... when I was done with dinner... I realized I still had some energy to put up some lights that I had found while cleaning the garage.  Cooool.  While eating I assessed the situation and came up with a plan, and within 40 minutes or so... we had new lighting to eat by.  Then ... when putting the ladder back, I found some other lights that I'd been meaning to put up for over a year and thought, what the fuck, I'll put those up too.  Took another 20 minutes.  Done and DONE.

So... I'm sorry this is boring.  And I'm embarrassed to tell you how much doing this stuff is fun and relaxing to me.  But it is.  The point I'm trying to make, though, is that if I had scoped all this out ahead of time... and written it all out on a legal pad (as is my habit)... it would not have gotten done.  Or, if it had, I wouldn't have had half as much fun doing it.  As it was, it was propelled by a real-time assessment of my energy levels, and creatively emerged from the day and how I felt like spending my time.  At no point did I think, god, I hate my life and would so much rather be sleeping or watching a movie.  I had given myself full permission to do anything I wanted, and I was doing exactly what I wanted to be doing, when I wanted to be doing it.  I am now ending the day feeling incredibly satisfied and pleased with how the day went.  And, I would hope, I would feel the same way about the day if I had indeed spent it reading and sleeping and watching movies on TV.  The goal is to follow the whisperings that come from within, not follow the list whether it makes sense or not in real time.

Which brings me to the concept of the To-Don't List.

Obviously, I'm a big list person.  We all know that about me by now.  But sometimes, as I'm finding, the To-Do list becomes an oppressor in itself.  An Abilene Paradox that we fall into with our own psyches.  I write down a list because I think I'll feel happy when I'm done with it.  But, in real time, sometimes I don't want to do that list any more.  But I feel guilty and chastise myself for slacking off, whipping myself into an anxious morass, thinking if I don't get all this done today then I'll have to do it, and more, tomorrow, and maybe it will never get done and I'll lose my house and the love of my children.. it goes on and one.

There are certainly things that have to be done.  But getting stuff done is not, for me, the problem.  My problem is heaping way too many things onto myself and trying to get all  of it done, even the nice-to-haves, all at once, with the goal of getting everything accomplished some day.  And on that happy day, I get to take a breather.  Because the To Do list is done, finito, complete.  And I can then breathe.

So I'm working on the opposite.  Things not to do.  Like scheduling too many things in.  Like doing things I don't have to do and don't want to do, but am doing anyway because I said I would.

So here's a shot at a workable To-Don't list, based on my day today.

1. Schedule the day so that there are no time margins.
2. Keep social engagements even when I can't or don't want to do them. People will live if I can't make it to something; maybe they secretly don't want to do it either.  Clear boundaries makes everyone happier.
3. Work until I am feeling very fatigued.
4. Schedule my travel time to the minute.
5. Eat very quickly.
6. Make sure to take care of everyone else's needs before my own.

What I learned today was that, without the list, I got more done.  I was more relaxed, and I thoroughly enjoyed each project as it presented itself.  Now, of course, I can't trick yourself into not having a list but secretly wanting to get a lot of productive stuff done.  You actually have to give yourself permission to do anything.  And then see what you feel like doing.

The key thing here is actually having clear uncluttered un-accounted-for time in your day.  It's like extra money.  You've paid your bills and done what you have to do.  But this is free time, dispensible time.  You have to give yourself permission, first, to have it.

Maybe today was going to be a day where I slept and read all day (that was more like my yesterday looked like.)  That is OK!  I was honestly OK with relaxing today.  It's all about whatever comes up out of the subterrenean depths of my motivation.  The point is to make the motivation lead the activity, whatever it is, and not the list.

I guess the ultimate To-Don't list item is "Make a To-Do List."  I doubt I'll ever get completely away from that.  But I think there may be an art on what goes on a To Do list, or at least how one goes about planning on accomplishing it.  For now, I am going to keep an eye on how much I can change the ratio of time and expectations, and see if I can learn to listen to what I want to do more in real time, and try to edge away from the tyranny of the list.


The to-do list can obfuscate my inner voice, and sometimes really prevents me from knowing exactly where I'm at and what I actually want to be doing.  Not paying attention is a big one for the To-Don't list.  I need to know what I actually want, and to do that I have to be able to hear my inner voice.  When a chaos of Abilene Paradoxes are cluttering my brain waves, it gets very hard to know what I want to do, for myself, for real.  My goal is to figure that out and try to act more in accordance with that inner voiice.

Fantasies

I find myself fantasizing about the weirdest things.

Today, it was about going to the gym.  I was driving by my gym -- wait.  Let's get something clear.  I have been paying monthly for the YMCA for decades.  And if you prorated every time I went by how much I spent, each dip in the pool has cost me about the same as my fabulous two nights at the Langham awhile back.  So... before I get into my fantasy about going to the gym, just please understand that it'd be like someone fantasizing about getting a root canal.  It's about that rare and about that appealing idea to me under normal circumstances.

But we are redefining normal these days.  And as I drove by my gym (at least I remembered where it was located), I started thinking about one period of time when I actually went consistently enough to work up to running 40 minutes on the treadmill.  And I started thinking about how cool that was, that feeling of getting into a groove with the running until it didn't feel awful any more... it felt pretty good actually.

And I thought, man, someday I'll be able to do that again.  And I have these running shoes (good as new!) and maybe I could actually start running outdoors sometime, but no, then I'd wreck my knees and what I really don't want is for anything to interrupt my exercising regimen.  Because -- and now I started getting really into this fantasy-- I wouldn't stop at just running on the treadmill at the gym.  I would also ride my bike!

And I'd ride my bike on days that I didn't go to the gym, and I could alternate various kinds of cardio.  I would train until I could ride a century, but first I'd just take longer and longer rides in town and up and down the coast.  I'd do that and I'd boogie board, too.  I'd do that on the days I wasn't running or biking or swimming (swimming!  what a great feeling that is, right?!), and I'd drive home feeling sweaty good afterwards, all the car windows open, cooling down but inside pulsing with energy, all the blood flowing...

Seriously.  This was me, fantasizing about working out.

Last weekend it was all about food.  That was the weekend after chemo when I was supposed to be nauseated and feeling about as far away from wanting to eat as you could imagine.  And... when it came right down to it... I really couldn't eat all that much, but I started fantasizing about wanting to eat until I really worked up quite an appetite (at least in my head).  I thought about what I would eat if I could eat anything and everything.

I pulled out cookbooks and looked up fancy recipes.  I spent a long time looking at all the ways to barbeque ribs.  (This is also not typical behavior, as anyone who's known me for five minutes will attest.)  I did actually find a recipe for roasted vegetables that I put together for dinner (that I may post here someday, it was so good) and it was fabulous. But a rare instance of my fantasies finding tangible expression.

But then I started fantasizing about the oddest things.  Rice Krispies.  Rice Krispies are sooo... perfect sometimes.  But I'm trying to stay away from dairy, so I spent a good long while wondering if Rice Krispies would be remotely as good with some weird version of milk, like soy, or almond.

Of course, I indulge in some typical fantasies, such as pepperoni and mushroom pizza, dripping with fat -- and even ordered one the other night, but -- like fantasies of the other nature -- it was not nearly as satisfying as I'd imagined it would be. It tasted weird and I felt profoundly unfulfilled afterwards.  I think about hot fudge sundaes and half caf lattes, and basically the concept of any kind of food that I might eat without worrying about some part of it causing something bad to happen to me (sugar feeding cancer, caffeine feeding headaches, dairy feeding stagnation).  I want me to feed on my food, and my food to just sit there and not feed something else that is going to kill me.

Fantasies.

I've been dreaming, of course, about travel.  It started normally enough, as with all gateway fantasies, with Hawaii.  Someday, I'd muse in the beginning, when this is over, I'll go to Hawaii and bask by the pool for a week, with nothing on my mind except ... nothing.  But my rational brain would start noodling with the concept, poking holes in the thin gossamer fabric of my imagination:  how long is the flight to Hawaii?  Will it trigger lymphedema?  Will I have to wear my compression sleeve?  How unsightly would that be?  And what about sunburn?  Won't that bug my arm?  How much sunblock do I think I'll need?  Etc etc etc.  I've always been kind of lousy at fantasizing, to tell you the truth.

So I scaled back.  How about Singapore?  Singapore sounds good.  It has all the same niggling stupid thoughts associated with it -- plus being on the equator produces the worst sunburns ever -- but, hey, Singapore!  I could do Singapore!

But, then, whatever.  I don't need to do Singapore to be happy.  How about the San Diego Zoo?  For one long hot afternoon (probably while the A/C was on the fritz), I thought about sitting in the aviary at the San Diego Zoo.  I dreamed about the cool misty humidity of the aviary and wondered about what rare and beautiful birds we'd be able to see.  Was it cheating to count new species of birds if you were at a zoo?  How lovely it would be to just sit on a bench inside the aviary for hours on end, and just be....

Crowded by possibilities, I immediately started fantasizing about the great cities -- the glittering jewel of San Francisco by the bay, the rich warm smells of Boston's North End, visiting my friend Gail in London, listening to jazz with a cold beer in a smoky upstairs club in Paris.  The other day was Walden Pond day... .could not get my head away from the lush tranquility of Walden Pond, and a cool summer swim to the other show.  Then there was Scotland day-- old friends, castles, theatre, whisky, walks in the countryside.  On that day, I spoke my fantasies aloud and Roger and we spent a dinner planning a trip to Scotland, Ireland, and Amsterdam next year.

Then a few days ago it was train travel.  What if we just took a train to... anywhere?!  We could go eat jambalaya and beignets in New Orleans, visit Roger's haunts in Kansas City, stop to hear some blues on Halstead Street in Chicago, then pull into Penn Station in NYC, coming up from the escalators into the humid human hustle bustle, sucked into the flow immediately.  (Roger and I locked that fantasy down into a train trip we are planning to Seattle, with a sleeper and everything, in a few months.)

I once even fantasized about shopping (see root canal, above.)  I hate shopping. But one of these days my body is going to be somewhat the right size and shape again.  I could go shopping!!!  How much fun would that be?!

And then sometimes it just gets really wierd.  I fantasize about getting a haircut.  Maybe I'll even start coloring my hair.  Maybe I'll become one of those women who spend actual time and effort on their hair.  I... could blow dry it, maybe.  I could make it look like ... you know...something.  I have this fabulous strawberry blond wig that a dear friend gave me... and it's all kinds of fun.  Maybe, with my own hair, someday I could actually look... good,maybe?  As in put together with forethought? With themes to my clothing, and attention to detail, and a hair stylist I see more than once every nine months.  I mean, I'll always be me, with a style sense that obviously originated in the '70's and hasn't really felt like budging since... but, maybe I could wear colors!  I sit around and think of colors that are outside my usual spectrum of denim, black, gray and white.  What about tourquoise?  Do I like tourquoise? Yes, I think I do.  But what about teal... yeah...mmmm... teal is great too.  Reds.  I like reds.  Could I actually ever purchase something with one of these colors?  What would that be like?  What would I purchase if I had the energy?  Maybe I could take some time with all of this stuff.

I ache for health.  Instead of fantasizing about sex (I do fantasize about fantasizing about it, which is a start), I fantasize about health.  What it would it feel like to eat, to breathe, to walk, to travel through the world without feeling toxic and broken?  What would it be like to have all my vitality back, at my fingertips, and not worry about what it's going to do, whether I'll overreach my precious stores of energy, whether it'll be OK for me to do or eat certain things.

I used to ache for time.  I still find time utterly precious and in all too limited supply.  But now I long for the health and energy to pour into that time.  My attitude towards work is vastly changed; means to an end, etc.  My attitude towards everything else is to gauge how much body/mind/soul value it contains -- and if it's not a high caloric value, then I move on to something else.

I woke up the other morning with the remnants of a dream all too vividly present.  In the dream, I was suddenly and inexplicably up to my neck in raw sewage.  And I woke up with the feeling that that's how I feel these days, inside and out.  I just want to feel clean, and non-polluted, and healthy. 

I am doing really well, all in all.  I am working, I am taking two walks a day, I am feeling pretty buoyant most of the time.  But obviously my mind is longing to break free, to escape the bounds of this physical body and fly away... somewhere, anywhere... to find that homeland called Being Healthy once again.  It may be found in a bowl of Rice Krispies, or it may be found on a beach somewhere around the world.  But someday I'll find my way back there.  And I'll make sure to send a postcard when I do.

How to Trick Yourself into Relaxing

I feel so clever.  I've tricked myself into being very throroughly relaxed.  And You Can TOO!

Here's how you do it:

1. Get diagnosed with a life threatening disease with a very long and arduous treatment regimen.
2. Undergo enough of the long and arduous treatment regimen to have a good sense of when you are going to feel like a green rotting corpse.
3. Understand that on the days that you will feel like a green rotting corpse, you probably should not plan to work, socialize, clean the house, do errands, or otherwise be in any way productive.
4. Clear your schedule accordingly.

Here's where the beauty part comes in.  IF, by extraordinary luck (or an accidental combination of a perfect cocktail of medication that miraculously enables you NOT to feel like a green rotting corpse on the days that you've anticipated feeling like a green rotting corpse) you feel pretty good on those days... voila!  You have an ENTIRE DAY FREE.

It's the best plan ever and I feel so wickedly clever for stumbling upon it.  Here I am... after a night in which, indeed, I really did feel one foot in the grave, cursing my life and watching each second hand crawl across the clock face, tormenting me with the painful length of the passage of time... and I'm supposed to feel crappy.  And I MIGHT feel crappy in a bit.  But right now... I don't!  And I haven't all day.  (Relatively speaking of course.)

Here's how good I felt this morning (aside from the fatigue and body aches and flushes of heat and cold, etc.):  I felt so good that I started cleaning the house.  And I felt so good cleaning the house that I even indulged in a Fantasy of Health... what I would do if I actually were feeling truly great in my body.  I would clean the house, and get my stuff in order, and then I'd go to Jersey Mike's around noon and get myself a mini Italian sub (Mike's style), and a Diet Coke (very cold), and then I'd take that picnic lunch and my old beach bag and my old orange boogie board and my (in my fantasy) new bathing suit that actually fits on my (in more of my new fantasy) intact body and my (probably actually realistic) wet suit that  may actually fit me again and not make me look like a big black rubber sausage... and I'd drive to the beach (with no traffic, because this is a fantasy beyond all possible reality at this point), and then I'd find a parking space (why the fuck not) and then I'd boogie board in the fresh clean sparkling effervescent wondrousness of the Pacific ocean, feeling 1000% alive and free and whole and healthy and just exploding with vibrancy and vitality.  And I'd do that for a couple of hours, taking a break to eat my picnic, and then I'd come back home feeling like I'd just spent six weeks in Bali being cared for by native servants and massaged with fragrant oils and relaxed and whole and happy in every molecule of my body.

That was how good I felt; good enough to envision all that.  And while I envisioned all that, I did a little work around the house.  And while I did that, I realized how long it'd been since I'd had my weekly Saturday ritual.  When I was growing up, my mom would always leave me a list of all the things I had to do before I could do anything else on the weekend.  And, of course, that list became the source of endless hours of therapy sessions because it totally fed into my OCD and became this tyrannical THING that always had to be serviced before anything else could be done -- and yes, we know all about this yadda yadda -- but... really... in a weird way I kind of liked the list.  Because when it was done... it was DONE.  Finito.  List crossed off  = guilt-free freedom.  Yes, you could say I would probably have been better off without the indoctrination to always finish the list, but... really... I'll give you the name of my therapist and you guys can chat about it.  It is what it is.

Anyway.  I did my own little walk around my perimeters this morning.  I watered the plants in back.  I swept the floors.  I cleaned the kitchen a little bit.  (And I even left the floors for Roger who absolutely INSISTED on doing it himself.. because I'm turning him into a freak of nature like me... but give me brownie points for letting him do it.).  And then I balanced my checkbooks and paid the bills and squared away my bookkeeping.  And.. then... it was time for lunch!  Miracle.  It wasn't Monday afternoon.  It wasn't midnight.  It was lunch time.  And I still felt good, and I'd gotten what I wanted to get done.  And my house is clean and my money in order.  What else was there to do?

NOTHING.

Nothing.  There was nothing left to do but make myself something to eat.  Finish off the last episode of House of Cards.  And... then what?

Dare I say it?  I'm relaxed.  I do have to do my taxes but (see "planning for feeling like a green rotting corpse," above) I already have carved out tomorrow to be utterly free as well.  I can do my taxes tomorrow.  And in between then I can plan out maybe a dinner to make, and write this little blog.

OK.  I know I'm a dip shit.  This is so obvious.  But I'm going to write it down anyway.  Because, really?  I don't think we do this all that much.  Give ourselves MORE time to do something than it will actually take?  Give ourselves a day without external commitments?  I don't at any rate.  I pack my shit in (as I've said) like I pack the back of a truck.  Every spare moment artfully and completely utilized.  No wiggle room for unwanted slop and waste.  Efficient, compact, wall-to-wall time absorption.  It's a beautiful thing... and many of us are very adept at it... but... it... actually kind of makes for a sucky kind of life.

I'm finding this out with work as well.  For long reasons that you don't really want to hear from me, because I have a basically whiny and ungrateful attitude about it, I am now working part time and being paid by the hour.  I hate this, but I'm learning something about myself in the process (hmmm... now there's a theme).

And what I've learned is this:  When you are compelled to actually stop working... and actually DO stop working.. well, then... you don't have to work.

I know you're all laughing at me.  But this is kind of a new idea.  I'm a salaried employee, and I work long volunteer hours for my beloved/beleaguered opera company, and I give of myself relentlessly, and (really) my usual inner monologue goes something like this:  "Let's just work until we drop, shall we?"  And that's about the extent of my limits and boundaries with regards to working hours.

But now that I'm working hourly, and have a bad attitude about it, I am fully able to turn things off mid-sentence at the end of my allotted hours and start doing a "Quittin' time!"  happy dance inside, and then go off and do other things.

And you know what?  I can do this.  It works.  I'm done.  I don't give it another thought.

So, for those of you who are plagued by The List and don't know how to do this any better than I do (and for my own specificity as well)... here's a start at how to trick yourself into relaxing once in awhile:

1. Make sure you book your activities to actually take less time than you have available.
2. If you can't do that, don't book yourself into more activities than you actually have time for.  (You will have already failed at tricking yourself into relaxing, but at least you may be able to avoid tricking yourself into a neurotic stressed out breakdown.)
3. Leave significant margins.  If Mapquest says it will take you 18 minutes to get across town in current traffic, go wild with yourself and give yourself 30 minutes.  I know that's crazy talk, but if you do happen to get there 12 whole minutes early, you can check your email or catch up on messages, or even just look around and breathe for awhile.  C'mon...12 minutes... it won't kill you and what else could you get done in that amount of time?  (And besides, Mapquest is invariably wrong and then you'll be right on time anyway.)
4. Be your own boss: literally.  Here's a fantasy: what if you really liked your boss?  What if you really wanted your boss to be happy, and to succeed, so you could get a raise and be happy and successful yourself?  What if your job was to go around making sure that your boss was really well taken care of at all times, so that she (or he) could really be effective in the world?  Now: what if YOU were doing that for yourself?  Would you book your boss into meetings that she couldn't possible get to without popping an aneurysm?  Would you book your boss's schedule so that she was so stressed out she'd take it all out on YOU?  Like, think about this.  You don't want to take it all out on yourself.  You need to be your own best advocate.  You are not industrial machinery.  It is not "let's work till we drop and then see what happens" time.  

Consider finding relief in your own life.  Consider constructing a life that you like to live in, so you don't always have to escape it in order to get a breather.  What if a day at home actually could feel like a vacation... with room to contemplate some new menus to cook, or a new blog to write?  Or the option to take a nap or watch TV, guilt free?  I don't think we need to come up with life threatening diseases in order to grasp the concept of an actually empty calendar day, without time pressures and commitments. 

Maybe I'm just kind of delirious because I don't feel like crap (and I've got handsful of medications, both toxic and anti-toxic) coursing through my blood stream.  But... it's a thought that I'm going to pursue.  Infrastructure Saturdays.  Days in which the whole day can be spent at home doing things to make order and catch up and look around and in which to catch my breath.  Not with lists that can't be accomplished in sixteen hours, but with simple things, grounding things, things that will make me feel better in my home and in my body and in my soul.

It's a trick, granted.  But worth a shot.

Gumballs

In the middle of Chemo 3 and realized that my writing has dropped off.

This is disturbing.  When I'm traveling, in a new country or town, the imperative to write is so strong that sometimes I just have to stop and capture it as quickly as possible.  Everything is new, and interesting, and triggers so many thoughts and connections that I just can't wait to put it in words.  But, after awhile, I acclimate and the popcorn popping frenzy of ideas starts to slow down.  Oh yeah, another gothic cathedral.  Oh yeah, another train through the rubber plantations of Malaysia.

So I fear that I am now getting acclimated to being in treatment.  To feeling sick.  To being This Person. 

I don't want to be This Person, this person who is sick and bald and half formed and in the middle of the chrysalis. I want to be caterpillar, or moth.  And, if I have to be neither, I want to be interested enough in the process of this weird unknowable change to want to write about it more.  (And, in some self defense, my neck has been terribly out of whack from too much keyboard time for the past two weeks, so the physical act of writing has had to be very constrained, just to try to heal up.)

Still, I realized this morning that the gumballs haven't been coming down the shoot as frequently.  It's always felt to me that I get the ideas for these little musings like gumballs, arriving down a fun winding shoot like at those big Chuck E Cheese machines (that cost, like a buck, because of the sheer funness of watching them cascade down the shoot).  My gumballs also arrive down a fun shoot, and they appear randomly.  They consist, usually, of a thought or two that collide and do something interesting. 

I'm not really sure what they will produce, but they brush up against each other, these gumball encapsulated thoughts, and they usually produce a kind of frisson that sparks up my interest.  When they are really crackling, words start forming in my head and then those words acquire a frenetic urgency, filling my brain up until I just can't help but start writing them down.

The amazing can't-wait-to-get-them-down words usually, mostly, evaporate when I'm at the keyboard, which is too bad.  But new words invariably take their place.  And they generally start writing themselves. The me inside my head sort of sits back and watches, like a kid at a big magic game board, where the characters and movements have taken on lives of their own.  Sometimes I interject and move something around, and sometimes I can pause the action and try to figure out where it's going, but mostly I sit back and watch, taking my cues from the action in front of me and trying, as best I can, to keep my ego/brain/editor/self out of it.

It's intensely enjoyable, of course.  And I know that I can go back and turn the editor on again.  But here's the trick: I get one gumball at a time.  And the faster I pull it out of the shoot and chew on it, the faster the next one comes.  Sometimes, when things are really hopping, I'll get two.  But mostly it's just one at a time, and the time it takes me to pop it in my mouth and suck the juices out of it generally informs how long it will be before I get the next one.  In short: use it or lose it.  It's interesting.

I chew on these things and stuff comes out.  I'm usually surprised when someone quotes something I've written.  It seems dimly familiar, like I've read it somewhere, and (I have to admit) I'm usually pleasantly surprised.  But... it came more out of the gumball than out of me.  It just, kind of, appeared.

Is this revealing too baldly how fun this is?  I'm sorry.  I know, writing is supposed to be arduous and hard.  And I have been working at the craft itself for, yup, a really long time.  But blogs are not really the real deal yet.  If I ever go back and clean all this up and put it in some kind of formal form, trust me, it will take many revisions and painstaking cleaning up.  So this is not that.  This is gumball snatching, grabbing the goodies from the shoot, chewing them up, and sharing the flavors that emerge.

Independence days

What a bizarre week.  Roger came down with a very bad cold or flu on Monday, and my job ever since has been to try to maintain my immunity from it.  This has involved staying completely away and checking into a hotel for the first two nights, and then camping out in the living room once I dared come back into the house.  He was experiencing a continual low grade fever that was still high enough to be of concern to both of us, coughing and sneezing and generally feeling extraordinarily crummy.  Something I wanted and needed no part of.

It's been weird and ungrounding.  While walking the dog on first night of this, Monday, I came up with the idea of escaping all of it.  I called the Langham (a fabulous, dripping-with-luxury hotel about five minutes from where I live) and told them my whole sad story: chemo, sick husband, if I get sick I'll die etc...... and let them come up with the magic words ("Manager's rate") on their own.  The magic words were forthcoming and the reduced rate brought the nightly figure down to a number I could almost wrap my head around. 

I noodled on the idea some more after I came home. I realized I'd have to sleep on the sofa, or pull it out into the sleeper (which would inevitably involve remaking it, cleaning underneath it, etc).  How much did I not want to do that?  Well, as it turned out, I did not want to do that a whole lot more than I wanted to retain my savings account.  So, at 11 pm, I threw a canvas bag's worth of vitamins and medications and a pajama top and ratty tee shirt and shorts into a bag, bid my very sick husband (and children, and dog, and cat) a hasty adieu, and boogied on out of there.  Ferris Beuller screeching the 1961 Ferrari GT California out of the high school parking lot had nothing on me.

Walking into the Langham, I am greeted by a marble table covered with silver vases filled with delicate pink peonies, roses, and tulips.  Their soft perfume permeates the room.  The lighting is cheerful but soft.  A sultan or an emirate from a middle eastern family, along with his family, are checking in before me. Women in elegant dresses waft past.  And I stand there with my Country Trading Post bag, my hastily wrapped scarf, my jeans and black tee shirt, hoping I look as extraordinarily pathetic as I feel (pathos equaling justification for the Manager's Rate), and thinking I probably don't need to work very hard with any of this.  The scarf pretty much tells the whole sad tale; no one is going to mistake me for a debutante tonight.

The great thing about great hotels is that they are invariably staffed by the nicest and most civilized people.  And I can do civility.  I find myself altogether able to live in that world.  I have vast inner reserves of entitlement (based mainly on vast reserves of untapped credit) that I happily tap into.  The sum total of all of this is probably less than the bored 10 year old daughter of the sultan or emirate's forgotten piggy bank, but hey... in this country, it will still work.  I find it easy to quench the panic at the numbers on the room service menu, and the valet parking overnight charge, and the tourism tax -- I really do -- and I proceed to totally indulge myself for not just that night, but the following night as well.

Luxury is quiet.  Luxury is cleanliness.  Luxury is looking out at a well-groomed landscape that seems to whisper words of profound peace and well being.  Luxury is standing on a bathroom floor that is tiled with marble that does not look like you could choose it from the shelves of a Home Depot, but rather was quarried and cut by swarthy Italians, and polished by hand by skilled multigenerational craftsmen.  Luxury is the murmur of soft voices by the pool, the tinkle of ice in crystal glasses, the occasional laughter at a clever turn of phrase.  Luxury is lighting that you can dim down to a soft amber glow, so if you wake up in the middle of the night unaccustomed to the high ceiling and large room, you can remember where you are quickly and sink back into the white sheets and pillowcases and return to a deep dark revitalizing sleep.

Luxury is reading about spa treatments like a menu of recipes, each more mouthwatering than the last.  Luxury is opening up the top desk drawer and contemplating a life where you would use the lovely pink pen to scribe a written letter on the pink bordered stationery to your beloved uncle summering on the Continent, and having a doorman post it for you.

I do luxury very very well.

At least internally. 

I stayed a second night so that I could have a full day to enjoy even more of all of it.  I did a little work in the middle of the day, and went to a couple of appointments, but at around 4:30 my son Spencer came over to go swimming.  I pulled out my swimsuit and realized when I put it on that we really did have a problem here.  It's a few years old (which means it's still new in my book), but it's stretched, and I've lost a lot of weight, and my boobs are still a construction site, and... basically, it was about as workable as wrapping myself in paper towels.  Add the very bald head and, well, it was clear I was not going to be doing anything but turning heads in a very bad way.  So be it.

I covered myself up with the old teeshirt and shorts and we went down to the pool.  It was a hot day and the cool blue water was infinitely inviting.  Young men in Langham shorts and shirts were walking between the chaises, taking orders and offering services, and I felt my shoulders and neck and back relaxing just being in the same picture frame as all of it.  We camped out in a shady spot (don't want to trigger that lymphedema!  Remember, Kathy, you're still only a visitor in this world of health and ease...) and I contemplated the long walk to the shallow end where I would enter the water and be able to hide all but the head.  While Spencer just went to the deep end and dove right in, I kept the tee shirt on, took off the scarf, and decided to just forget all about it.  I did the walk, I took the shirt off at the last possible moment, and the moment I got in the water I forgot about everything except how good it felt.

Heaven. 

The salt water was the perfect temperature and I slid into it with intense, almost heartbreaking gratitude.  For the next twenty minutes or so, my body felt great.  Not just OK, not just a cessation of pain, but fucking happy.  Going underwater with a bald head felt giddily terrific.  I moved it around underwater, just to feel the lack of the hair moving back and forth.  Coming back up, the air moved through the stubble and tickled it dry off my scalp.  Fantastic!  I attempted to do a little breast stroke and realized immediately how badly I need to start swimming again.  My surgically affected muscles are still sore and tight, and desperately in need of strengthening and stretching.  My whole body craves more toning and moving.  As soon as all this is over, I promised myself... we've got to start getting back in shape again. 

I swam with Spencer in this lovely pool, almost forgetting the grimness of the journey I am on.  And I slept for two nights without disruption, or concerns, or the nocturnal vigilance that comes with residing with people and animals and a household that you are connected with.  I was deeply grateful that, with two swipes of a credit card, this respite was mine for about 35 hours, and provided me with a deep rest and sense of tranquility, in addition to the germ avoidance, that was delicious to body, mind and spirit.  And yet, as much as I wanted to stay in that lovely moment forever, by the morning of the second day, I was ready to get grounded again, and come home and see what that was like.

Cut to:

Yesterday.

The fourth of july.  Independence day. My favorite holiday because it contains one of my favorite words (not "day").  Roger is still sick, but better.  I have spent the last two nights on the fold out couch, vowing to get a new mattress on it as soon as possible, moving my stuff back and forth from bedroom the living room and back again daily.  I am still a ronin, a wandering samurai, even in my own house as I strive to still avoid germs while making myself comfortable. 

My neck has been killing me for ten days by now.  Sparked by too much staring at a screen (I fear), it has settled into an intermittent problem that flares up (at best) several times a day, or just digs in like an ice pick in a Tarantino movie.  The doctor has said it could be a part of the treatment.  The injection they give me to stimulate the white blood cell counts (a nasty mother fucker of a drug) does seem to like to find your systemic skeletal weak spot and take up residence there.  So, the migraine during last round and the neck this round: this is my new curse to endure.  The chemo seems almost benign in comparison.

Remember the air conditioner?  I'm sorry, the new air conditioner that we put in at the beginning of this whole cancer adventure?  The entire four days of redoing our central air and heat, paying the big bucks to do it right, and fast, and as well as possible because I was going to be going through chemo this summer and the last thing I wanted was to be going through the heat while going through chemo at the same time?  Remember that? I believe I chronicled that saga at the beginning of this blog.  Well, the air conditioner -- I'm sorry, the new air conditioner -- stopped working on Thursday.  Why Thursday?  Well, of course it's because it's the Thursday before a three day weekend.  And why this  Thursday?  Well, because it's hot as fuck outside.

We wake up yesterday morning, on the fourth of July, on Independence Day, on my favorite holiday of the year, and look at the day.  Are we going to have our annual party with all our wonderful friends and hot dogs and beer and watermelon out in the back yard?  Hell no.  Are we going to see our favorite fireworks down at the high school at night?  Doubtful.  Can we make it to the parade that is, like, 100 yards from our house and that I love with a deep and undying passion for all of its small town quirkiness and silliness, from the chassis of the Rose Parade float that they drive through annually (not the float, just the chassis, because, well, it's our  Rose Parade chassis) and the bag pipes and the drumline with drummers who play at the beginning of the parade and at the end because, well, with a six block parade route, why would you not want to march in the same parade twice?  Are we going to this parade that delights us so every year?  Wellll... maybe.

We drag our sorry old sick cranky tired asses down there.  Actually, we make Taylor drive us down there (all three blocks or so away) and we drag our sorry old sick cranky tired asses, and lawn chairs, about twelve feet from the car to a shady spot.  We immediately feel a bit better.  I send Taylor down to Starbucks to fetch me some refreshments.  We recuperate from our long hike from the car.  We feel a bit better still.  And... it's good.  The parade is what it is, as usual.  With long gaps between old cars and the drummers.  One set of horses.  The great and thrilling Game of Thrones sound of the bagpipes.  It's hot.  We see some friends.  It's good.

Then we drag our sorry old sick cranky tired asses back home.

To our hot home. 

And by three in the afternoon, I am sitting on the sofa with a wet washcloth over my bald head, in my lightest flamingo jammie tops and shorts, stupified with pain and heat. Spencer and his best friend are flitting in and out of the house putting together a party for their friends from school and work.  They have just taken a 40 mile bike ride.  They are happy and energized and laughing.  I am about as far away from them, and about as far from that happy moment in the Langham pool as it is possible to be. 

I pop some pain pills and wonder if they will work.  I move from living room to bedroom and back again.  Roger is still coughing and taking it easy.  I binge watch a few episodes of Game of Cards and even Frank Underwood isn't capable of pulling me out of my misery.  Finally, after getting some reports from the back yard about who and what is going on out there, I give up and go back to hang out with Spencer's friends and co workers.  I cannot get it together to put a scarf on, or change from my flamingo jammies, or to do anything but (in a fit of elegance) leave the wet washcloth behind.

They were great about it.  There was a breeze and even though it was warm, it was more pleasant.  I spent an hour or so with the kids, and one of their kids (a charming first grader with long curly hair I kept wanting to offer to take off her hands), and they were great.  The pain pills kicked in eventually, I kept people laughing (or thought I did), and it ended up OK.  The sun finally went down, the temperature went down, and we got through it.

So, what's the point in all this?  Independence.  Sometimes independence from external constraints is required -- from the tyranny of the red coats, to the confines of school and work, to the regimentation of the daily schedule.  For a couple of days I had a break in my life, and was able to enjoy a taste of luxury and refinement and graciousness.  Sometimes that's what is needed. 

And sometimes we need independence from pain, a relief and a separation from what's going on in our own bodies and heads.  Sometimes we need a break from ourselves, and what's tyrannizing us from the inside.  That's harder to rebel against, to break free from.  But it can be done.  Sometimes just knowing that it is all temporary, that the sun will go down, that the temperatures will fall, is enough to get us through. 

In the end, this week was a series of dependence and independence days.  Even though I felt derailed and like a wandering samurai for most of it, eventually I was able to find respite and relief, enough to go on at least. 

It is out there.  And, when all else fails, I still have my credit card in my wallet.  And the name of the night manager at the Langham.