Who's to blame?

It struck me after writing the last blog, that I am looking hard for all the ways I can possibly change my life, which assigns blame to me and the way I have previously lived my life.  And of course, a common answer is that no one is to blame... that this is just a bad luck of the draw.

Which is worse, though?  I would far rather take responsibility, improve every little last bit of my life that I can, with an eye to improving my odds... than to accept that it's a bad luck of the draw.

A bad luck of the draw today, means that I can have a bad luck of the draw tomorrow. 

If, however, it's something I've been doing, or thinking, or eating, or not eating... then I can stop doing it, stop thinking it, stop eating it, or start eating it... and I will have effectively stacked the deck in my favor, and the game tomorrow will go my way.

I like taking responsibility.

I like digging deep and thinking about the ways I can improve the odds.

I am willing to eat a pound of broccoli sprouts daily to reduce the risk of having this happen again.  I've happily forsworn dairy and sweets since my diagnosis and don't feel the slightest bit deprived.  I'll drink wheatgrass and make space for exercise, and I'll even try to limit my commitments:  anything to buy myself more time on this precious, frustrating, beautiful and endlessly complex planet.

I am willing to confront my most ingrained habits, my core approaches to life, my most deeply held belief systems... and change whatever needs to be changed, if something in there is keeping me from being as physically and emotionally healthy as possible.

I am far more willing to do this kind of work than I am to accept that the carcinogens are so omnipresent that we don't have a chance to combat them, or that the risk factors are so numerous that we can't do anything to duck the bullets constantly heading our way, from so many directions.

Of course it comes down to the serenity prayer (as so many things do).  There are things I can't change.  And there are things I can.  I don't have to feel cursed or bad because there are things that I can do to improve my lifestyle and skew the deck in my favor.  I just need to do them. 

All I can do going forward is to understand that this is happening because of causes and conditions both in and out of my control.  Once I accept that, I simply need to keep moving forward with wisdom, courage, and a whole lot of self-compassion.

Pain Management: Part 7 (The air conditioner sidebar)

Meanwhile.

Our A/C went out in our house.  The guy comes out and I'm laying in bed recuperating and I start hearing him and his assistant and Roger talking outside my window.  Blah blah blah leak blah blah blah difficult access blah blah blah be taking a gamble blah blah blah if it had been installed right...

At this point I get up and wobble outside.

This is sounding expensive, I say.

Ha ha ha, they say.

And, as it turns out...I'm right.  I'm SO fucking right.  The A/C is kaput.  There is no refrigerant left.  This means a leak.  Since it went kaput so fast, that means it kind of gave out spectacularly... rather than in a pinhole kind of way.  We can throw in the equivalent of "fix a flat" and hope it stops it up, along with about 500 bucks worth of refrigerant, but there's no guarantees.  We can pay the guy to fix it, but the way it was installed -- under the house, against some ductwork, the controls on the far side of the crawlspace -- makes it super expensive to even start trying.

One alternative is to get some portable units to push around inside the house.  Inside our massive 945 square foot house.  Moving around in the morning, in and out of the one bathroom, is like a Chinese puzzle, people ducking in and out of doorways to let the person who is in the biggest hurry blow by so that the next most harried person can duck into the bathroom.  If we added two rolling A/C units we probably would get stuck in the house and only our arms and legs would wiggle out of the windows, desperately trying to alert the passersby that we have a problem here.

Not a good alternative.

Or, we can rebuild the entire attic and put it up there.  Do some rat abatement, some carpentry, add an attic fan, throw in some insulation, put in a whole new unit.  Boy, that sounds great, doesn't it?  And has a price tag that's pretty staggering attached to it.

We haven't figured out what we're doing yet.  We're getting more second opinions about this than we did with my surgery.  That seems relatively straightforward suddenly.  Cut, tuck, nuke, poison, augment, done.  This... gets soooo complex.

And when I say expensive, I'm meaning expensive.  Like up there in the $15-20K range expensive.  Not sure about you, but I don't have that kind of change hanging out under the sofa cushions.  And yet, on the other hand: it's air conditioning.  People kill for less when it's really hot out there.  Tempers rage.  Divorces happen.  And, like, I'll need that going on while I'm dealing with chemo?  Can we cut ourselves a little bit of a break here?  Can I start a kickstarter campaign for my LIFE?

So, I'm thinking, OK then.  Let's all calm down.  Maybe we can refi something, squeeze some more money out of this poor little house. And while we're at it, we should add in some other desperately needed improvements, low ticket items, like the kitchen and bathroom.  And while we're at that, we should actually investigate whether we actually could ever expand.  Maybe build a new little house in back.  And while we're at that... it's mind boggling. Down the rabbit hole.

But first things first.  We need the A/C.  As my son (a huge GoT fan) intones: Summer is coming.

It's all surgery these days.  Gutting things, straightening things, removing things, expanding things.  What is going on?  Where will we all be when this time of upheaval and rebuilding is done?  Cooler air, fewer rats in the attic...figuratively and literally.  We can only hold on tight and wait for this to settle down.

Messages from within

I am getting messages from deep within.  And they are disturbing me.

When I look deep into the core of myself, into my body, into this vastly mysterious system of gut flora and blood circulation and qi meridians and heart and soul, this incredibly complex world that is the thing called "me," and when I ask it how it's doing.... I am getting a really sad and unnerving answer.

It's scared.  It's angry.  The part of me, the self that's not a self, the whole complex arrangement of cells and energy that makes up this thing called "Kathy" -- is scared, and angry.  And it's scared and angry at... me.

I can only try to explain this sense.  My body, my essence, is scared and angry at the way I run things.  It's scared because it worries that when I get back to "normal" I'll run it too hard, push it too hard, sell it out too readily.

It worries that I will sacrifice its well being for others'.  That I will mortgage off its health and forget these hard fought lessons I'm learning.  It's angry at me for years of treating it like a fork lift.  It worries that all these things may have caused it this current amount of suffering and fear.  It worries that we'll go back and have to learn these lessons again if we don't learn them right the first time.  It worries about what's going to happen next as we enter into this vortex of new and brutal treatments.  It worries that it doesn't have a voice.

And to this I have to answer that I'm sorry.  And that I am extremely grateful.  My  body is strong.  My spirit is strong.  And I don't think I've abused it so horribly much -- but of course something went haywire, and I have to listen to that. 

So we are engaging in a dialog, a deep subterranean dialog.  Trying to figure out, first, where this dichotomy between the two flavors of self is coming from.  Trying to honor and respect and coax out that voice that is trying to be heard, now that there is a little bit of time and silence to do some deep thinking.

I don't want to add to the "let's bust Kathy for working too hard" fest.  As popular and as easy as that stance is to take, I really don't think it's that.  The people who wave this flag are people who really, I'm sorry, don't get me.  And I don't think I could change myself radically enough if it was that. I am a person of intense interests, who loses herself joyfully in productivity and creativity and loves working hard to achieve a worthy goal.  I resist this "working too hard" paradigm as a basis for blaming me for what's going on.  It's something else that's a problem.  It really is.

I think it is more along the very deeply rooted need I have to take care of everything first and then try to make due with the scraps left over on the banquet table.  I've mentioned that before and I'm sure I'll keep circling back. I have a hunch this is part of the whole breast cancer metaphor -- feeding the world before feeding the self.  The oxygen mask thing.  The part that is too polite to speak up when a need needs to be met.

It's not like I'm a dishrag.  Faaaaar from it.  I am certainly not a mousy, timid, self effacing, subservient woman as anyone who knows me will confirm.  So part of me resists this "putting everyone first" explanation, as well as the "works too hard" theory.

It's something else.  It's something... else. 

It breaks my heart when I get this feeling that there's a part of me that is scared of me.  I really want to make amends.  And I also really want to understand what's going on.  As I start thinking about getting back to doing some work that need getting done, I worry deeply: Will I know when to stop?  Can I preserve the quiet needed to hear my own inner voices?  Will I still be able to allow this lovely flow of words to continue coming out of my fingertips?  Can I learn to be one of those rare individuals who can remain lovely and gracious and kind, while still being very clear about what their needs are, and are able to conscientiously take care of themselves without drama or fuss, but appropriately, and well?

I think this can be done.  I need to maybe switch the roles a little bit between the ego/stage manager me and the body/mind/spirit me.  Maybe the stage manager has been a little too bossy and needs to acknowledge that... in the bigger scheme of things... the body/mind/spirit team is actually in control.  Again, as much as we'd like to believe the little guy upstairs in the control room, the one who talks incessantly about how in control he is ... it really isn't the case.  It's the softer parts of us, the less verbal, the fuzzier pieces that really make up the majority of the whole. And if those pieces go, especially the body part, the game really is over... at least on the playing field we are currently engaged upon.

So I hope I can learn to hear those other voices more clearly.  I need to keep writing.  I also have several wonderful people in my life whom I can use as role models... women who move through the world with an open heart and a helping hand, but who still stay healthy in body, mind, and spirit, tending their personal resources with a good and loving guardianship. That's who I want to be.

Pain Management: Part 1 (Post op)

Pain.  There's a bunch of different kinds of it, and over the last week I have become a connoisseur.

There is muscle pain, such as when someone slices into your pectoral and then expects you to move your arm.

There is incision pain, such as when someone slices into your skin to remove a body part.

There is nerve pain, such as when nerves are severed and then flip all over the place like live wires snaking all over the ground, sparking and flipping out like in a horror movie about tornados or earthquakes.

There is deep pain, so deep you don't even know it until you realize your teeth are clenched and your face is frozen into the permanent rictus of a brave half smile.

There is surface pain, so evanescent that even a breath of breeze, or a wrinkle in the sheets, or a sleeve brushing up against the skin makes you inhale sharply and say (to yourself) (usually) what the FUCK?

And there is everything in between.

This week we've been exploring these things.  And let me make something clear: it's not been horrible, it's not been excruciating, I've never cried from it (well, more on that later).  On the scale they tell you to rate these things it's been a continual 3 (at the best) to 6 (at the worst).  Usually like a four.  Which, all things considered, is really standable.  The thing that finally made me cry is that it's just been incessant.  Grinding me down at a low, psychic level, until I caved in and started really being unable to deal with it.

That's the end point of this week, the second full week after surgery.  Let me walk you through the whole timeline.

After the surgery: fabulous!  Dancing the fandango.  I had this orb thing hanging around my neck, plugged right into my body to keep a steady infusion of numbing agent dripping into the area.  Fantastic.  No pain.  Loved it.  This was supplemented by a steady regimen of two Percocets every 4 - 6 hours, whether I wanted it or not.  Loved that even more.  Nighty night.  Slept like an angel.

Coming home.  Still pretty good.  Infusion thing still dripping into me steadily, everyone saying keep ahead of the pain.  Lovely blissful long moments of just lying in bed and breathing deeply, feeling lovely, wandering through the gardens of my thoughts for hours, enjoying the relief of being post op, the sense of being taken care of, the flowers and love permeating the house.

Three/four days post op.  Well, the annoying little infusion thing ran out, as it was meant to.  That caused a little bit of a problem.   Now I was living completely on the Percocets.  Starting to get a bit nauseated with food, when I ate, which was seldom.  Starting to need to deal more aggressively with constipation.  A little tenuous on the pain spectrum, but hanging in.

Then, the weekend.  On Sunday I realize I'm going to run out of Percocet before my doctor's appt on Monday.  That's when the fun begins.

Pain Management: Part 2 (My life as a junkie)

I call the pharmacy (not our regular one, the one across from the hospital).  A snippy woman with a thick accent and an attitude that implies I just got between her and her favorite reality show answers.  I tell her I need a refill and start to give her the number: "201--" 

She stops me before I get to the fourth digit.  Oh NO, she says, we can't refill a prescription that starts with a 2.  That's a controlled substance. 

I say, well, I know it's a controlled substance... I was just calling to find out --

We can't refill it, she says. 

I say, I am getting that, but what I need to know is what I need to do to --

We can't refill it, she says. 

What if I get the doctor to call you--

We can't refill it, she says. 

Excuse me.  What I was saying is what if I get the doctor to call you and fax a prescription to you?

We can't refill it, you can only refill this with a physical handwritten prescription, and by this point her voice and tone are super harsh and judgmental, like I'm some fucking tweaker from Modesto trying to game the system and get some fun stuff for me and my greasy haired biker boyfriend. 

I get pissed off (as all good drug addicts do when someone is standing in the way of their fix) and say Hey, you don't have to get mad at me, I'm just asking a question here and trying to figure out how to get this to work. 

We can't refill it, she says.

I hang up.

I call the prescribing doctor's office.  The clinic is closed; I can't get a physical Rx until Monday.

I call my own pharmacy, where we've been going for years.  Here's my problem, I say.  The guy listens to me.  Just the fact that he's listening is helping my pain level go down.  He suggests I switch to something called Norco (not the town in Central California, I'm assuming, although I'd probably be having better luck up there on any given street corner).  He gives me the dosage that will best match the Percocet and says it's about 20% less powerful but close enough and will get me through the day until I can see my other doc on Monday.

I call the prescribing doctor's office back.  They have their doctor on call call me back.   I talk to her and she says the Norco is fine.  She calls it in.  Roger picks it up.  Done.  Now I can get through to Monday.

Monday I see my oncological surgeon.  Everything looking good.  I tell her the Percoset/Norco saga.  She says, OK... but at this point we want to wean you off everything, so I'm going to prescribe 600 mg of ibuprofen every 6 hours and you can take the Norco as needed for breakthrough pain.

That's where the problems start.  Because I'm both a weenie who can catalog five differentiations of pain (as evidenced earlier) and because I'm a tough little soldier.  If they don't want me on the narcotics, fine.  I won't be.

Pain Management: Part 3 (The weaning / the keening)

Monday: OK.  Norco every six hours; ibuprofen every six hours.

Tuesday:  I wake up semi frozen in pain; it's been all night and I am EMPTY.  I stagger to the bathroom and take the ibuprofen, stagger to the kitchen to eat a banana, and stagger back to bed.

I have a busy day.  It's actually OK.  I still take the Norco every six hours.  It's OK.

Wednesday:  Wake up even more frozen in pain.  Stagger, stagger, stagger.  I can do this.  I try to sleep a lot.  I notice I'm not moving as much.

Thursday:  Wake up super frozen.  I think I ask someone to bring me the ibuprofen.  I stagger through the day.  A better day, a little more movement.  And it's good to have the narcs out of my system.  It's just that I have this ongoing nerve pain.  It never goes away.  I go to acupuncture and she works on it.  I'm starting to crack.

Thursday night I get weepy.  I realize that I'm just so so so so fucking sick of all this.  That there are more horrors and depredations coming up. That I'm still not well from the surgery.  That I'm sick of the drain and the pain and just the overall LENGTH of this thing.  I'm barely 15 minutes into this and I'm just so... damn... tired of it all.

It's not going away.  It's not going away until I get through all of it.  It's the crossing of the desert, the march across Mordor, the trial by fire, Ulysses' struggle to get home, the slaying of the dragon.  I can't quit, I can't shirk, I can't refuse.  I can only do it.  And I'm so so so sick of this ongoing pain in my arm.

It's not unendurable.  It's not excruciating.  It's just there, and always has been there, and I'm so sick of it being there.  I get weepy.  I lose heart.  I crumble inside before this silly, stupid, really little thing.

And then today.  Today is just one long series of cluster fucks after another.  It starts with my Bright Idea.  The Norco that they don't want me to take is part acetaminophen.  Like 325mg.  Why couldn't I take an actually real grownup size dose of Tylenol instead of the Norco...and not have the narcotic issue but actually enhance the pain killing efficacy?  Good idea!  I call my oncological surgeon's office this morning to check out this new plan.  Her assistant gets the problem and suggests I try out my Bright Idea for the rest of the day and check in with her later.  Great. Got it.  I take the double Tylenol and wait for blessed relief.

Pain Management: Part 4 (The antibiotics sidebar)

Meanwhile.

There's the sad sad tale of the antibiotics.

The day after the surgery, Roger went to a place we now call "the pharmacy we've never used before and will never use again."  These are the same people who yelled at me for the Percoset questions, but I'm getting ahead of this part of the story.  He ran across to this pharmacy (which you'll note that I'm trying to politely refrain from naming, except to mention that it's in the Von's across from Huntington Hospital) while I'm being discharged to fill the two prescriptions -- the Percoset and an antibiotic.

He gets two little prescription bottles.  One with the Percoset, and one filled with 26 capsules of the antibiotics with instructions to take three, eight hours apart daily for fourteen days.  Now, please... just stop for a second and visualize this with me.  Three capsules, eight hours apart, for fourteen days.  Even in my blissful stupor, I can multiply that and come up with... uh... a boat load of pills.  Not 26.  Not a small bottles' worth.

We all look at these instructions and the bottle of capsules and back at the instructions again, and the only thing we can conclude is that what they REALLY mean is to take ONE capsule every eight hours for a total of three a day, because otherwise they've only give us enough for, like, almost three days?.... with one dose being short?.... it makes no sense.

So I take one capsule every eight hours, three times a day, starting a week ago Tuesday.  On Monday I take the little bottle and show it to my oncological surgeon to see what she thinks; she's confused; her assistant is confused.  We're all confused.  (Just to kinda sorta clarify: the plastic surgeon prescribed this stuff but I was visiting the oncological surgeon; they work as a team and are fully interchangeable, so either can make a call about medications etc.)

At about this point I realize that on top of all this weird confusion, I'm going to run out on Thursday rather than making it all the way to next Monday for the full course.  I actually believe at this point someone called in the good pharmacy to put a prescription in, but it's probably still sitting there because on Weds of this week I get an automated call from the pharmacy we'll never use again saying the prescription is ready to be picked up.

OK, fine.  Well, I think, at least they're kind of on top of things, right?  And maybe their sophisticated auto dialer system knows that I'm about to run out on Thursday?  That's cool.  I guess they may be good guys after all... blah de blah de blah.

I'm actually chilling out about this pharmacy (this is after the tweaker insinuation call I detailed earlier), until Roger picks up the new prescription yesterday, and gets a whole honking CANISTER of pills, 100 of them to be precise.  WTF?

Well, it turns out that that's the remainder of the pills they owe us.  Roger questions the quantity when he picks up the boatload of pills; they tell him this is the rest of the Rx and the original wasn't completely filled.  Well, we kind of knew that (as obviously we had to come back), but... did we understand the instructions wrong and take completely the wrong amount this whole time?  Like, why would they give me an amount for only two days without telling us?  I look at the hundred capsules, add them to the 26 I got originally, decide to finally do some math and multiplied nine (three capsules three times a day) times 14, and get 126.  Which means, yes.  They gave me 26 first, without telling us, and then -- a week after those 26 ran out -- informed us that the remaining 100 were now available.

At this point I email the prescribing doctor (I know, about a week too late.)  I tell her the whole sad story and she does confirm, yes, 3x3 a day.  So I feel like a doofus because, really, I'm a technical writer!  I know how to write and to follow instruction!  And we did really not follow the original instructions to a tee... but, on the other hand... tiny vial?  26?  No notification? No instructions to come back?   It made no sense.

I heft up this humongous vial full of capsules and I call the pharmacy we'll never go to again myself, asking them nicely if they have an email that I can write a formal complaint to. I do kind of become my dad when I'm laying around the house all the time; a perpetual crank, he was always getting into verbal fisticuffs with the people he did random daily business with.  But really... seriously...26?  No notification?  I could have died here, people, from some horrible infection....

Hold please, they say.

Several people pick up and several times I say the same thing and get put back on hold.

Eventually of course I get someone who is actually now interested in what I have to say. I tell her the story.

Oh, so sorry, she says.  Yes, this was only a PARTIAL fulfillment of the prescription.  Only a couple of DAY's worth or so.

I'm, like, I GET that now.. but... you know, shouldn't you have told us about this?

She's, like, absolutely.  I am so sorry.  They should have told your husband.

I'm, like, you do understand that if I got an infection it would be totally your fault, right?

She's like, oh yeah, we are so sorry.

And I'm, like, OK.  So you give us this weird small amount and you don't tell us, and ... they're going to run out in like two days... so why did we get the message to pick up the rest of the pills, like, you know, a WHOLE FUCKING WEEK LATER?

And they're like, oh yeah, we're so sorry about that too.  Maybe your husband signed for the other pills and since he signed for something the automatic call back thingy didn't trigger to call you back when the other Rx was actually FILLED, but actually a week later.

And I'm, like, did you get the part where if I got an infection I could sue your fucking ASSES and end up owning your stupid Von's?  And by the way I was going to CC my attorney on the email that you still won't give me the ADDRESS FOR?


Depending on how cranky I feel, I'll probably call the manager back on Sunday, when she's there, and do the same thing again with her. And hope nothing infects in the meantime.

Pain Management: Part 5 (The Home Depot sidebar)

Meanwhile.

My mom's condo decided to get vacated in April.  The lovely tenants, no sarcasm, who moved out happened to cause enough damage to part of the kitchen that we have been needing to rebuild the cooktop and counter, in our spare time, during all of this.

So we went to Home Depot the weekend before my surgery and opened up a Home Depot credit card and put the cooktop and a buncha stuff on it and they then hooked us up with a service called Red Beacon that shoots out a description of the work that needs to be done and contractors bid on it and then you pay Red Beacon online and then Red Beacon pays the contractors and it's all cool.

The plan was to put all this stuff on the new HD credit card and have my mom pay it off and we avoid cash flow issues for everyone and get the job done now.  Easy peasy. So we buy the stuff and we meet the contractor dude and between clients and driving people around and fetching things for me and taking care of the dog and feeding us all, Roger has been going back and forth to the condo.

The work got done Wednesday and finished up yesterday and, thanks to the miracle of modern technology, I get an email from Red Beacon that says your invoice is ready, just click HERE and pay for it.  Voila.  We are SO on top of things that we can remodel a part of a kitchen AND deal with breast cancer and maintain our schedules (well, some of us) and juggle kids and the dog and the cat because of TECHNOLOGY and our amazing facility with it.

I click the button, I whip out my Home Depot credit card, I enter the numbers, I enter the funny three digit goodie on the back, and then I start... looking... for the... expiration.  Date.

Of which there is none.

Whaaa...?

No expiration date?

I turn the card around and around about twenty times.  No expiration date.

That's... weird.

I plug in something thinking the field just needs something filled in.  I work in the software biz. I know how easily these things can be tricked.  I'm smart like that.

I click Submit.

Nada.

Won't take it.

I figure out how to call Red Beacon.  A guy answers who, I'm sorry, sounds like he just woke up from about a two year nap out behind the hay barn after a six year moonshine bender. I tell him the problem and ask if he can plug the numbers in manually.  The answer, after he puts me on hold and checks with someone: They don't take Home Depot credit cards.

WTF?

Nope.  Don't take them.

But...but... that's why I... we... but I'm going to get nowhere with him.

I call the woman we worked with at HD.  She has no idea what I'm talking about.  Of course it should work.  She calls her manager.  Her manager confirms: no HD credit cards can work with Red Beacon.  I call customer service to see if they know about this.  As a matter of fact, they do not.  The first guy I talk to in customer service sends me to his manager (who knows nothing about this), and then I talk to that manager's manager.  THAT manager had no idea this doesn't work so he puts me aside while he calls the district manager.  THAT manager has no idea this doesn't work so he has to talk to HIS manager.  I'm so not kidding.  And then meanwhile the manager I've been talking to says he may also call the bank manager because it really should work because, after all, Home Depot OWNS Red Beacon.

At the end of the call, the district manager's manager is going to have to call someone back, so I leave my number, hang up, and put the charge on my own personal card and we'll figure it out later.

Pain Management: Part 6 (Return to the new normal)

Remember my arm? It still hurts.

While dealing with all of the above -- the antibiotics, the Home Depot, the crankiness, the pain -- yes indeed, I start feeling dampness below the place where the tube inserts into my chest wall.  Like, my tube is leaking.  I have felt this on and off for the last few days and now it's happening when I'm not moving or stretching too much.

Not good.  No bueno.  For the second time now I call my doctor's office.  Hiya remember me?  Yes, the pain is still there, AND I'm now leaking. Hmmmm.  This is kind of a problem.  I need to come in before the end of the day.  So I round up Spencer, he drives me up there, I go on in, my doctor's assistant fixes the tube, puts some new gauze on me and says oh, yeah, regarding the iboprofen/acetaminophen idea? the doctor says that sometimes the pain just doesn't respond.  And then she writes me a prescription, a physical handwritten non-fax, non-voice mail, prescription for Percoset.  (Remember Percoset?)  Just take some of this, she says.  No need to really be that uncomfortable.

Alrighty then.


I tell the whole sad story to the pharmacist at our regular wonderful caring Ralph's Pharmacy down on Garfield.  He says, wow, that's quite a step down from Percoset to Ibuprofen.  I'm like, all, tell me about it.  He hands me the vial, says there are 30 in there, and really, truly, I should just go home and take it easy.  It was the most compassionate phrase, and the most logical and straightforward interaction, I'd had all day.

So.  Here we are at the end of the day.  I'd say the whole day could be categorized as one big huge  "Unavoidable Other."  (Or, was all the back and forth avoidable?  I don't know.  I really don't.)  Body points?  Well, I'm no longer leaking, so there's that.  Soul points?  Salvaged by a terrific dinner procured by Roger from Carmine's followed by a whole family viewing of Fantastic Mr. Fox.  And some great moments wedged in between.  Driving around with Spencer, picking up Taylor at the train station, running through good names for the new blog.  So, oddly enough, there was a lot of soul going on today.  Just in the most unlikely moments.

Mind points?  I think I lost all of them for the entire week.

And... I did come home.  I did take Percoset.  I did manage to enjoy the movie.  But my arm?  Still hurts, baby.

Body/Mind/Soul exchanges (part II)

I've been playing with this mind/body/soul thing for a couple of days now and it has yielded some interesting insights and results.

Two days ago, Wednesday, I kept track of just about everything I did that took more than 15 minutes or so.  I gave everything a point value.  This included taking a shower (2 body points, higher than I probably normally would  because it was the first shower since surgery), taking my dog Sam on a walk (2 body points plus 2 soul points), and paying bills (4 unavoidable other points).

At the end of the day, I added everything up.  I had about 32 body/mind/soul points and 8 other points.  This worked down to a ratio of 20% body, 35% mind, 25% soul, and 20% other.  There were no unavoidable other points.

Tracking these things led to some interesting choices as I went through the day.  For starters, I did not check my email obsessively every 20 minutes.  Checking once every four hours or so could be considered an "unavoidable other" activity or even lead to something nutritious.  Checking every 20 minutes would have to be counted as an "avoidable other" activity -- so I didn't.

Then, later that evening, my son was in his room on his computer (as usual) and I was in my room reading or looking at my phone (as usual).  I looked at my values and realized I'd done plenty of brain work, enough body work, but I was low on the soul points.  I could sit and continue reading (which would have been fine), but actually making some popcorn and watching a good movie would be even more soul enhancing.  Because I don't do it very much, cooking is very soulful for me, especially now when the act is a little bit of a challenge and therefore a little more satisfying.  So I decided to do that.  I made the popcorn, invited Taylor out to join me, we flipped on the telly randomly, found a delightful little coming of age movie, and ended up watching the whole thing together while munching on popcorn.  Bingo!  Huge soul points, and a perfect ending to the day.

It was a good day.  I felt good at the end of it, there was a rough balance between the various parts.  I did not prod myself into doing more editing work, as I could very well have. I made sure to give the dog at least one walk, as I could have easily avoided.  The act of tracking these things worked pretty well.

Yesterday was not so good a day.  As the day went on, it just didn't feel like I had that much to track.  I did an errand with Roger, I ate lunch out in the real world, I got my hair washed, I even treated myself and my friend Jane to a manicure at the local salon (where I got a cute little pedi.)  It was a day of pretty high activity (for me these days), and a lot of conversation, and I got stuff done.  But when I came back and wrote everything down I realized that my total points were about 14 points, breaking down to be 48% body, 40% soul, about 1% mind, and 1% unavoidable other.

And I felt crappy.  My pain is wearing me down, I felt listless, my brain was going down paths I really didn't want it to go down.  I hadn't written anything, I hadn't done any billable (or even non-billable work).  I just felt blah.  Once I wrote everything down I realized that even though I had been enjoyably busy all day it ended up being kind of an iceberg day, rather than a spinach day.  Both days tasted like salad, but the overall point value was higher the day before.  Additionally, there was a distinct drop in the mind points, which I found interesting.  Usually the brain work is the stuff that overwhelms everything else.  But yesterday there was none, and I felt the disparity.

Interesting.

Vibrant, ecstatic health

I wrote this the night before going into surgery.  Must have forgotten to post it.  Here it is... a good "before" snapshot for me to remember,  as well as an "after" snapshot for me to strive for.

I had a moment driving back out to the west end of the valley where my body remembered some long ago summer morning, driving to the beach.  I think it was Big Sur, while I was living in Santa Cruz.

The trigger was this profound sense of vibrancy and health I felt in my body.  It must have been the endorphins I'd generated on my bike ride.  It was a high so rich and so deeply felt... my body just feeling so in tune with the music and rhythms of the world.  Better than sex, is how Spencer classifies a good bike ride.  And, while that was more information than I strictly needed, and while I would hesitate to go that far, boy... it comes close.

I had a lovely day.  I had to drop Taylor off at his martial arts studio in the valley and kill about four hours before picking him up.  I packed the new bike in the truck, dropped him off, and then headed back to Griffith Park, to ride my old loop and see if I still had it in me.

I did.

After 30 years.. which sounds like such a long time ... I still remembered certain aspects of the trail very clearly.  This is where I start gathering up momentum because there's a hill right around the corner.  This is where I really can pick up speed, hunkering down and crouching into the bottom of the dropped bars.  I have to attribute it to the new fangled bike, but the time to make the 8 mile round trip was the same as when I did it in the 80's, and the fatigue factor was not significantly worse.

I ended up covered in sweat, having screamed and sung and talked to myself for the 40 minutes of the ride.  I pumped it out, bobbing to the music from my iPhone, and got a whole lot of yayas out.  It carried me the whole day and into the evening.

Afterwards, I had lunch with a girlfriend, and we talked and laughed and had a great time.  She gave me a beautiful plant for the back patio, and a little statuary of a meditating frog, and we talked about all the stuff we talk about.

A good day.

Tomorrow will be a good day too.  I am no longer seeing it as losing a part of me, but more that I am gaining something new.  It will be a new part of me.  It will also be mine.  Not the original parts, true... but hopefully close enough.   And, it will be disease free.  Tomorrow at this time, I'm trusting that the cancer will be out of me, at least as much as we can possibly know about.  That will be good.  The cancer has done its job, its soul-awakening, life-affirming job... and now it's time for it to go.

I will be making a descent into the depersonified world of hospitals and procedures for a short while.  But I always find places like that somewhat fascinating.  Hives within hives.  I'm sure they'll take good care of me.

And while I'm being prepped, I'm going to remember all the support I'm getting from friends and family, all the emails and texts I received today.  The love I'm feeling is palpable, immense, and deeply affecting.  I'm going to remember that, and the image of the pavement zipping by underneath my pedaling feet.  I'm going to remember the feel of sun on my face and the breeze on the water as we sail the bay, the Golden Gate bridge high overhead.  I'm going to remember that feeling of youth and vibrancy of that long forgotten day, going to the beach in Big Sur, my body humming from the simple joy of existence.

Weight Watchers for the Soul

As I'm feeling better, I now am needing to start thinking about how to prioritize my time.  Since I really intend for this to be a time of deep contemplation about how I live my life, I think the prioritization of time and energy expense is a vital thing to grapple with.

So, here's what I'm noodling on today.

First, I need to rearrange the queue.  It's the oxygen mask dilemma: do I put the mask on myself first so I can better save the others around me, or do I save the others around me and die in the process? 

Obviously the former.  Which is already a challenge to me.  But, let's assume I can change my default impulse and keep myself in front of the queue rather than always being polite and letting others' needs cut in front of me.  I get to have a say and a priority here. 

Assuming that, how do I manage that prioritization myself?

My working model for today is that there are three categories of things in life that need to be balanced and nourished: body, mind, and soul.  If these three areas are well taken care of, I think that makes for a pretty healthy life.

Let me define some terms.

Health, to me, means balance and harmony, in whatever area. Eastern medicine strives to bring balance and harmony to the body, by balancing the qi.  Once balanced, the energy should flow evenly, bringing harmony to the being as a whole.  I think that overall health means making sure that body, mind, and soul all need to be nourished, thriving, and in balance with each other.

A nourishing activity is an activity that produces greater net well being.  The act of consuming a food, or performing an action, that results in more energy, greater balance and harmony, than there was before, is a healthy activity.

A negative nourishing activity, is an activity that results in less net well being.  Either the act of the activity is so draining that it ends up depleting rather than enhancing the resources, or the activity itself is simply not aimed or devoted to increasing health -- either way, it's a negative nourishing activity.

How to judge if something is a nourishing activity or not?  I think you can tell in two ways:  1) before the activity, do I have a sense of excitement or dread looking forward to doing it?  2) After the activity, do I have a sense of being enhanced or depleted?  I can be tired at the end of something but still enhanced (that sense of "good tired").  Or I can be drained and depleted, which is no bueno.

So, how does this work out?

For now, I'm dividing my life into the three categories of body, mind, and soul, and then putting activities into each category.  Like this:

Mind:

• Work that includes:
• Creative problem solving
• Use of my skill set
• Writing
• Editing

Body:

• Sleep
• Good eating
• Exercise
• Yoga
• Bicycling
• Walking

Soul

• Meditation
• Bird watching
• Socializing with good friends
• Cooking
• Gardening
• Reading
• Watching good content

Other:

• Meaningless stuff that just wastes my time
• Unavoidable - DMV, calls to insurance company, life admin stuff that just needs to be done, by me.
• Avoidable - Activities that sap my spirit and soul that don't necessarily need to be done but I do because it's easier than drawing a boundary; activities/people that used to nurture but now deplete; stuff that I could delegate but don't.

I would say my pre-diagnosis lifestyle was allocated something like this:

• Mind - 50%
• Body - 10%
• Soul - 10%
• Unavoidable Other - 10%
• Avoidable Other - 20%

I would say the optimum allocation would look something like this:

• Mind - 30%
• Body - 30%
• Soul - 30%
• Unavoidable Other - 10%
• Avoidable Other - 0%

What if I looked at each activity in a day and assigned it a plus or minus point value.  For example, right now I'm writing and thinking about all this stuff.  Is this a soul activity or a mind activity?  Well, it's a mind activity but it's high in nutritional value.  So maybe I could allocate this a Mind point value of, say, 5.

In a bit, when I'm done with this, I'm going to do some editing work on a book about Armenian musical history.  It pays me a bit of money, it uses my writing skills, but it's a slog.  It's not necessarily a negative nutritional slog, but it's not as highly nutritional as writing this has been.  So maybe I'll allocate it a Mind point value of, say, 2.

I just had a conversation with my mother.  Talking to her gives me some soul nutrition, but it's also an Unavoidable Other.  So maybe I would give that a Soul point value of 1, and an Unavoidable Other point value of 1.  If it had gone on very long, or become counterproductive, maybe those numbers would be in the negatives, or move into an Avoidable Other category.

Negative values can also be attributed -- if something is depleting or of negative nutritional value.  I could also argue that there could be occasions where there are mixed values, say, indulging in a beer after a long sweaty bike ride.  The beer would be low or negative on the body point scale, but high on the soul scale.
 
And, of course, I'm in a false modality right now, as I'm not working.  Working, for the most part, will  change my balance around.  I won't have the option to stop work after two hours to get some soul time in.  But it will fulfill most of my daily Mind requirements, and also inform me what I need to do off hours (work more?  NO!  Read more, walk more, visit the nursery, watch a good movie with the kids?  YES!)  Also, it may help to prioritize within work hours -- to maximize the high nutritional value of writing well, analyzing thoughtfully, using the brain that they're hiring me to use, rather than to engage in meaningless chit chat or waste time in the myriad other ways one can waste time in a corporate office environment.

It's like Weight Watchers for the soul!  Striving to get balance in the various categories.  The point is not to become a complete anal retentive jerk about this, but to actually make me conscious how my prioritization of tasks lead towards or detract from balance and harmony.

Maybe this is me with too much time on my hands.  But it seems to have some interesting possibilities for someone who is looking to overhaul a lifestyle at a molecular level.

More later.

10 things I've learned so far

1) Daylight is a nice time of the day. 

2) My house is a very peaceful place in the middle of the day.  Peaceful to the point of looking somewhat post-apocalyptic.  The dog looks like road kill, asleep.  The cat is stretched out on the bed, extravagantly relaxed, and asleep.  Occasionally my son comes home from work, watches an episode of something on his computer, and stretches out on the sofa, asleep.  Sometimes even my hard working husband slips home and takes a quick nap between clients.  Who knew???  It's siesta time, and no one sent me the memo... until this week.

3)  Narcotics are good for pain.  They are good for sleeping.  (See #2 above).  They are excellent for feeling very very peaceful. 

4)  Narcotics are not so good for the digestive system.  Narcotics suppress the appetite, and the bowels, and everything in between.

5)  Narcotics are not a good way to come up with creative ideas.  (My brilliant tagline for a constipation remedy came to me in a blinding vision around Day 3:  "Choosing to defeat social candy")  (I know.  WTF.)

6)  There are some good books out there.  Currently in the middle of The Goldfinch, by Donna Tartt.  A long mother, but super good and an excellent way to fade in and out of reality. 

7)  Walking: good.

8)  Eating: good.

9) If you lose a body part to cancer, it's much more healthy to say "I've gained a cancer free body" than "I've lost a body part."

10)  There can actually be a point, or I think I'm seeing that possibility, where one can be awake and not be tired and longing for the next nap.  I think that's called being... relaxed?  rested enough?  Haven't felt this way for a long long time.  I'm exploring the idea and will get back to you on this.

More later.

Easter Morning

Easter.  The ascent from the underworld.  The cycle of the seasons.  The celebration of movement from death and dying, to life and rebirth.

It's a good holiday to have today. It's good to take a moment to appreciate the true nature of things in this world.  Because our planet turns, we have the seasons.  We move from periods of life to death and back again.

Spring is the season of starting fresh, creating new life. The birds are nesting and soon will be hatching.  The hummingbirds are mating with crazy erratic air shows.  Feathers are brilliant and joyous and enticing.  Spring is the inhale, bringing it all inside, gathering the widest spectrum of life and embracing it fully.

The summer will soon be on us, throbbing with heat and the pulse of youth.  Summer is surfs up, long evenings of barbeques and laughter, tanned skin that smells of salt and sun.  Summer is life being well lived, with long days of sunshine and plants that gulp in the vitamins and grow to their fullest expressions.  Summer is the pause at the top of the inhale, where we assimilate life, holding it within ourselves and basking in its nourishment.

 Fall is the decline, the slow inevitable exhale.  Fall is the moment when death is introduced. The colors explode in one last burst of glory, and then the world prepares for its descent.  The chill in the air whispers of the chill in the tomb.  Fall is an exuberant last hurrah.  A moment where mortality knocks on the door and we must let it in.

Winter is the three days in the tomb.  The moment after the exhale when it feels like it all may be lost.  Winter is Persephone's sojourn in the underworld, the closing of the shop, the sleeping of the soul, the pause between the final exhalation and the first new gasp of life.

Today we are celebrating rebirth and life.  I am still in the underworld, but am taking my thought process today to images of a full return to life.  Boogie boarding, bicycling, walking, breathing the air in the freshness of the morning when we go out to bird.  Feeling whole in body, without pain, without disease.

The ascent will happen, as it always does.  And it will be followed by other descents, as it always will.  The circle is the beautiful thing.  The circle is the paradox and the heartbreaker, the thing that causes us to lift up our hands in supplication and joy.

Thank you to my friends, family, and colleagues for all the beautiful flowers, which are making my home a glorious celebration of life, beauty, and rebirth during these difficult days.

The second cake

Through a lovely set of serendipitous events, a book has come into my life which has really been an amazing read. It's called Close to the Bone, by Jean Shinoda Bolen.  It's about the soul-deepening experience that a life-threatening illness can open us up to.

As a Jungian specialist, she uses a lot of mythological metaphor as a springboard for her exploration of this subject.  The first one she gets into is the story of Persephone.  Picking flowers in a field one day, the earth suddenly opens in front of her and she is abducted by Hades and taken into the underworld.  Her whole world is stripped and turned upside down.  Bolen makes the point that this is what being told you have a life-threatening illness is like; you are suddenly in a world where none of the old rules apply, none of your strategies for coping are relevant, and other people are in control of your fate.

Another story that really resonates with me is the story of Psyche.  Psyche is given a task to go into the underworld.  She is given two cakes -- one to distract Cerberus, the watchdog at the gates, when she enters the underworld, and one to distract him when she is ready to leave.  She is also told that she will be tempted to provide help to others, but she is instructed to say no each time.  As she was forewarned, she encountered an old man carrying a large bundle who asks her to pick up some twigs for him.  She encountered three old women who asked them to help her with their weaving.  She saw an old man floundering in the Styx who held out his hand for her to grasp.  Each time she had to say no, because to say yes would require putting down the second cake.  And if she did that, she would never escape back to the light again.

As I prepare for tomorrow, and the journey ahead, these two stories really resonate with me.  The first thing that I will have to give up as I descend, is electronic communication.  First, it will be my choice as I try to spend today getting physically and mentally ready.  Thereafter, my radio silence will be enforced by whatever physical state I'm in.

I am also saying no a lot.  I have already canceled an opera board meeting tonight, which felt good on some levels.  On other levels, I hate putting things off until later... but in this case it was necessary.  I am going to have to say no to good friends when they want to visit, if I don't feel up to visiting.  Instead of doing everything I can do, I'll do everything I should do.  For myself. 

I'm going to try to learn how to answer the question of what do I want more readily.  It's always been a stumper. What are my needs right now?  What would nourish me best? 

It's the difference between not eating badly, and eating actually well.  I used to say I ate pretty well because I did not always order onion rings, nor did I have a beer with every meal.  There's a big difference between that and eating really nutritious foods on purpose to really nourish all your cells and body.  It's going to be an interesting challenge to do that with other aspects of nourishment as well.  Instead of merely avoiding toxic situations, I need to actively engage primarily in activities that will feed my soul, strengthen my spirit.

So that's where I'm going.  I may be unable to communicate for awhile.  I may need to be quiet. I may be making choices that are different than they might once have been.  Most of all, I will be making sure to hang onto that second cake, so I can come out of this first part of my journey quickly... and with enough strength to get me through the next part.

TMI

If you ever find yourself at the very beginning of a long, slow, year-long train wreck, my advice to you is to not spend your hours researching train wrecks on the web.  There is so much information out there about how badly trains can wreck, and what the precise trajectory of most derailments are, and how many survivors can be expected (depending on how fast the train was going and what the weather conditions are), and whether people sitting in the front of the train are more likely to have their heads severed as opposed to suffering spinal compression and be paralyzed for life.

You can read all the stories about people who survived train wrecks, and also people who blame the train industry in general for their lack of safety and protocols. You can read about people who never go on trains for this very reason, and then you can change to reading about car wrecks and roller blade accidents and how many former train riders are implicated in those.

In short:  too much information.  Knowledge is power.  And yet, really, do I want to know how prevalent depression is after a train wreck?  Or how radically life expectancy is liable to change?  Do we really really want to know these things?

The other day I wrote that we freak out because of our need to have an illusion of control. We also believe that researching everything will also give us control.  These days it becomes utterly addictive to learn, and research, and browse.

It's totally depressing. And yet, even as I'm writing this I found myself branching off and researching online web sites that help you determine which adjuvant therapies are best suited for you.  I completely advise against it, even as I do it.


Insidious. Maybe knowledge is not power after all.  Maybe knowledge is just the illusion of control.

Getting Serious

I have a life threatening illness.

That statement still seems absurd to me.  There is a huge disconnect between that statement and how I consider my life, and how I feel in my body.  It simply does not compute.

But apparently it is true.

I was laying in my acupuncturist's treatment room the other day, stuck like a porcupine, feeling extraordinarily relaxed, and I started thinking about the ordeal before me.  How radically upset the apple cart is, and how it will continue being upset for the foreseeable future.  How long (and short) each day has become as I savor its sweetness and race against the clock to get things done.  How my prioritization of time has become so very important.  How many things have changed for the better and how many things have, let's be honest, changed radically for the worse.

I was thinking about who I would be when this is over.  Whether I will learn my lessons or whether I will just say, whew, ducked that bullet, and go back to my old wearying ways.  I was wondering if I would remember the good things that have changed in my life in the last 23 days.  The way I'm eating now is making me feel vibrant, light, energized, nourished.  My increased exercise keeps my anxiety at bay, my mood buoyant, my brain clear.   (Well, most of the time.  It is an extreme moment, after all.)  I hope I remember these lessons.
 
I was thinking a lot about my tendency to take my responsibilities too seriously, always striving for completion, always pushing towards excellence and the fulfillment of my commitments.  I was wondering if that was truly a fatal flaw or if it's actually my greatest strength.  (Like all super powers, it's both.)  I was wondering if that was going to change with this illness, or whether I would just keep striving and working and pushing through the second I am able to again.

I was also wondering if I would ever get the hang of being able to stop a project in trouble before it's finished, in order to take time off, in order to stop for a moment, in order to regroup and replenish my body and soul.

I was wondering, as always, what to do about my outside commitments, and how to extricate myself from them without letting my colleagues down.  I was wondering about the people I love, and whether it would ever be possible to tell them no, for now, because I came first.

I love doing for others.  It does give me pleasure. I am a fiercely interested person, interested both in people and in their ventures, and that has always translated into too many projects and too many commitments.  I love them all, I do. And I tend to find my pleasure in fixing problems for highly challenging projects, finding the creativity in that, finding my job in other people's solutions.  I rent my fulfillment rather than owning it.

I suddenly realized this is a call to adventure.  It has all the makings of a quest, one fraught with actual mortal peril, and one in which the stakes are high.  It was not my choice to initiate this call, but I have answered it.  I will take the journey.  And at the end of this journey, I will be different.  I don't know how, but I can set some intentions.  I can determine the nature of this quest and follow its unknown path with that in mind, a guiding star to follow.

Like all heroes' journeys, this one will be transformative.  I am being plunged into the unknown, down into the abyss, and -- with the aid of helpers and guardians along the way -- I will eventually return to the land of the known.  But things will be different.  I will be different.  It's up to me to determine which treasures I will be seeking.  I need to understand what the true nature of this quest actually is.

For better or worse, deservedly or not, I'm going to have many months in which these questions are going to be put to the test.  I am going to have to learn, with agonizing repetition, how to read the needs of my body and put them against the needs of my outside commitments and people. I am going to have to look at my deepest, most entrenched habits and desires, and weigh them against time, and health, and rightness for my soul. I am going to have to learn where to put my creative energies and when to spend that energy on myself or others.  I am going to have to get good at this.

It's time to get serious.

It's time to get serious about laughing more, and playing more, and stopping more.  It's time to get serious about this thing called relaxing.  It's time to get serious about understanding what the balance should be between my doing for others and my doing for myself.  It's time to get serious, so I can continue on with a whole new set of weapons in my arsenal.

It's time to get serious about writing.  It's time to note that the incessant flow of words from my fingertips needs to find their path again, be channeled into something that only I can bring into the world.

It's high time, and past time, to tend to my own creative projects, whether that is running my own company or writing my own words.  To own my own challenging projects, rather than to commit my talents to other people, getting my satisfaction by helping others succeed.

It's time to get serious about who I am, why I'm here on the planet, and to spend my days actually being not so serious.  It's time to both loosen up, and get down to the work at hand.  It's time to find the lightness and the space, rather than just keeping my head down and doing.

I have always had a life threatening illness.  I just haven't been so acutely aware of its nature right now.

It's called life.  And we are all afflicted.

It Ain't Necessarily So

What is kind of incredible about this whole adventure is the quality of the conversations, both in real time and electronically, that I am having with people.  I am connecting with far off friends, getting warm and supportive messages from high school acquaintances (whom I always imagined would never deign to speak to me back then), and waking up to the most amazing emails and messages on my phone.  It's quite mind blowing.


Today I called my friend Bridget and we chatted for awhile about the road I am about to travel.  This is what she emailed me:

So . . . something struck me about your description of your reconstructive phase, the aching soreness that will accompany the muscle stretching action. While there is no pain involved with having active, malignant cancer, it is the healing that will hurt in the way I imagine the cancer should. It is the journey back that is going to have the somatic markers of injury and illness, completely topsy turvy. There is just so much about living that we assume is absolute and it ain't necessarily so.

I love that.  It's so true.  There is so much about living that we assume is absolute and it ain't necessarily so.  Who would have thought there would be so much joy in being diagnosed with cancer?  Do not get me wrong here.  I's certainly not been joyful all the time... far from it... but there has been huge dollops of the good stuff interspersed between the periods of aching poignancy, active fear, pervasive high octane anxiety, and feelings of total overload.  Sweeping tsumamis of gratitude for my friends and family.  Intense noticings of the details of life: the hummingbird flitting about today, tasting the nasturtia on the hillside; the visceral pleasure of putting on biking gloves; the feel of a hot shower; the pure and simple joy of a good long stretch.  I am usually too busy to stop and really relish these things.  I'm even relishing the busyness itself, and grateful for its way of taking over my mind with things that don't matter in the long run.  I LOVE things that don't matter in the long run these days.

Couple that with this feeling of absolute vibrancy and aliveness I've been having in my apparently very sick body.  Knowing that very soon it will be cut, and changed, and will have to heal back, I'm acutely aware of how good I feel in the present moment.  I grieve for what is going to happen and fear the healing process.  And... at the same time... I look back on my last surgery for a sudden and severe bowel obstruction, and count it one of the most life affirming and important watershed times of my life.  They kept me seriously doped upon dilaudid, my friends came around, and it was all so very very different than I would have thought it would be.

So what am I afraid of here?  We all know, on some level at least, that things ain't necessarily as we think they will be.  Some things will be better than our expectations, some things worse.  What we do know for sure is that, nearly always, our expectations are completely inaccurate.

The pain can be managed or gotten through.  There will be good moments and bad.  Even if the very worst happens on April 14th, what happens next is guaranteed to be nothing like I'd expect.

The unknown will be known in its own time.  

We set up our expectations, I guess, to feel like we're in control.  Our fear is that our expectations will not equal reality.  Which is funny, when you think about it, because our expectations are almost always dire, grim, and fraught with foreboding.

Which ends us up with this equation:

1)  The thing we may most be afraid of is that we are not in control, so we create expectations as a way to convince ourselves we're smart enough to know the future, and thus be in control.
2)  However, things as they play out in reality are almost always different than we expect, both in good ways and bad.
3)  This freaks us out.
4)  If we can accept the fact that we are not in control of everything (which we certainly understand intellectually, but mightily resist viscerally), maybe we can reduce our fear, limit our expectations, live into the mystery of each moment, and hopefully enjoy the ride a bit more.

We can maybe get through the bad parts, we can enjoy the good parts, and we can stop a lot of the madness and agitation along the way.


Thank you, Bridget.  Good stuff. 

Freaked out howling

I got my surgery date on Monday. April 14th.  And even just knowing the date sent me into a little internal tailspin (as evidenced by yesterday's blog).

I feel like I'm living on many levels these days.  The top 85% of me is doing really well, authentically well, loving the bike and grateful for my people and being very present in the moment.  I am functioning productively at work and managing to meet an impossible deadline.  I am being nice to my loved ones and enjoying my time with them with gratitude.

Then there's a guilty 5% layer that is actually sort of reveling guiltily in all the intensity.  I have always kind of thrived on crises, which needs looking at I'm sure, but being in the midst of a good story always kind of exhilarates me. 

And under that, there's a state that I call "freaked out howling." 

This state started small but is growing every day. It's possible it's a good thing, to be feeling weepy at times, and unbearably anxious at other times.  My acupuncturist says that cancer is a qi stagnation problem, and that I need to let things flow, emotionally.  Yell more, cry more, emote more.  So things are flowing.  Tears flow from my eyes at unexplained times, when I'm taken over with sadness over my changing body.  My walking and riding are flowing me through space while I'm exercising.  Words are flowing from my fingers for the first time in a long while.  (Words that aren't trapped by the necessities of documenting technology for my job, that is.) 

I'm emoting all over the place, or trying to.  Usually I'm pretty much the calm voice of Virgo reason.  But  obviously yesterday I was feeling angry.  Today was weepy and sad.  I haven't taken it out on anyone yet, but I've told my kids that if I start yelling (which is something of an unusual occurrence) that they should not be freaked out but tell me (later) that that was some darn good emoting, and be proud of me for letting it flow. Luckily we haven't needed to test that plan out yet.

I don't usually have surgeries.  The only one I've ever had that didn't result in a bouncing baby boy was an emergency surgery several years ago.  I didn't have time to really think about that one.  I came home after a stressful day at work with intestinal pains, spent a few hours curled up writhing on the bathroom floor, spent the rest of the night in the ER waiting room, and finally got some relief around 5:30 the next morning.  I was in surgery the next day to take care of a piece of scar tissue that had wrapped itself around my intestines.  It was my 51st birthday.  I didn't have a chance to do anything but move the planned birthday party into my hospital room and enjoy the dilaudid.

This is different.  This is giving me a month to contemplate a whole bunch of issues, none of them easy.  Some of them involve wondering what depredations my currently perfectly fine (ish) body is going to have to go through to get on the other side of this.  I look at pieces of myself and wonder what everything's going to be like in 6 months, a year.  Other thoughts involve what kinds of things I'm going to be putting into my fine (ish) body, what poisons, what devices, what pieces of me will end up in other places.  I feel like I'm about to become a Picasso painting.

And it's all so abstract.  I FEEL GREAT.  There's nothing in me that says, well, at least I'll feel better when it's over.  No!  I'm going to feel worse, for a long period of time, and then maybe, someday, I'll feel just as good as I do now.  It seems so illogical.  These machines and doctors are telling me these things and I simply do not understand them on a visceral level.

I also know that none of the things I'm fixating on are happening now.  This is all my mind torturing me with imaginings of an unknowable future.  I don't know what it will be like.  I just don't.  It's fully possible that this month prior to surgery could be the absolute worst it will get, emotionally, because of these weird disconnects and fears and projections.  Once I'm in the soup... hey!  I'm in the soup.  Every moment that ticks by will be one more moment I've gotten through and one less that I'll need to ever do again.  And there will be lots of good moments, I know that.  There will be some that won't be so good, and hopefully I will be armed with something that I can conk myself out with.  Or they will pass.  Or someone will come sit with me and make me laugh.  Or I'll write something that really lets out a lot of steam and feel better afterwards.

The moment we anticipate with dread is NEVER the way we dread it will be.  Never.

I've always said -- regarding Sisyphus and his rock -- that the curse is the walking downhill part.  Pushing the rock uphill?  That's just work.  You put your body into it, you focus on the roughness of the rock on your hands, you make little games with yourself about your velocity vs effort.  The truly insidious part of his fate is walking downhill, knowing what was to come, understanding that things would change, and not for the better, and not quite yet.

In the meantime, I'm learning the deep dharma of parsing out each second and trying to make it into my sole reality.  Very challenging, when "now" is so fraught, so intense, so busy, so crowded.  I'm usually pretty good at it, but this situation is really pushing me to the brink of freaking out, howling.  Not that you could tell it on the outside.  But inside... it's there.

What is helping: the many kindnesses of my friends and coworkers - from soup on the porch, to fruit on my desk, walking the dog, breathing in the spring air, as much walking as I can get in, sleep when I can get it, talking about little mundane things, immersing myself in the binary technicalities of my job, having spontaneous and surprisingly heartfelt soulful conversations with people I'd never really thought I'd go there with, the smoothies that Roger makes me in the mornings, the times I take care of myself consciously, writing.

What is not helping: reading too obsessively the various threads on the internet; worrying about things that haven't happened yet; basically anything and everything that goes through my mind that isn't really simple, and really happening right now.

 This is now. Nothing bad is happening at this moment.  And a lot of good is possible.  For now, though, it's time to go to sleep.  And hope tomorrow is a slightly gentler day.

Fuck You, Buddha

In Buddhist philosophy, there's a concept of pain vs. suffering.  Pain is mandatory as we travel through life, suffering is optional.  Suffering, the Buddhists say, is caused by our clinging and aversion to certain events.  We are hit by the first arrow of bad news, or disease, or loss, and that causes pain.  But the second arrow is what we do to ourselves as a result of our minds being so utterly attached to whatever it is that's been affected.  If we can detach ourselves from those things, then we will be without suffering.

Fuck that.

Today I am feeling very attached.  Even though all evidence is telling me that I have ducked the mortality bullet, this time, I am still very profoundly rattled by how close it's come.  And I'm very profoundly aware that this bullet can come out of nowhere, at any time, for no reason at all, whatsoever.  I could be riding my new life-affirming bike, my breast still full of cancer, and get walloped by a car.  I could be in the hospital after the car walloping and an earthquake could rumble through.  I could survive the earthquake, stagger out onto the street, slip on a banana peel, and crack my head open.  I could crawl, bleeding, back into the hospital, holding the pieces of my head together, and be given penicillin and have an allergic reaction.

You get my point.

It can come at any time.  And my gift, and curse, these days is being acutely and painfully aware of that fact.

And so I suffer.  Because I AM attached.  I fucking AM attached to my children.  I fucking AM attached to my husband.  I'm attached to the spring air, and the clouds in the sky, and my weekends at Descanso.  I'm attached to the very loud music I blast in my car these days, screaming and singing at the top of my lungs.  Aqualung, Garbage, loud, angry, bass line fuck you music.  I'm attached to my crazy dysfunctional job with its impossible workload and totally great cool smart earnest supportive co-workers.  I'm attached to my mother, trying to hold it together at 91, trying to wrap her head around what's happening to me, as she's trying to wrap her head around her own mortality.  I'm attached to food and how good it tastes.  I'm attached to Wes Anderson films and want to see all of them, all the time, forever.  I'm attached to martial arts and the feeling of whacking a bamboo stick against another bamboo stick with hard staccato blows.  I'm attached to the smell of a backstage, so attached that the thought of never again touching a hemp rope or pushing in the shutter of a leko almost makes me lose my mind.  I'm attached to every one of my friends, my glorious idiosyncratic funny smart literate sassy laughing cooking friends.  I'm attached to my goofball dog and my bitch of a cat.  I'm fucking attached to all of it, including my actual very own BODY PARTS, Buddha.  And THAT is why I'm suffering, and THAT is why I say fuck you.

I hate this.  It's all well and good to say oh yes, death is just another plane and we'll just vibrate on a different frequency.  Absolutely.  That could all be true.  But what about those KIDS of mine?  To never see them again with these eyes?  To never be told that my bike has been stolen, or they found the Maylasian plane, hijacked by the Somali actor as a reality show stunt after his taste of Hollywood -- hahahahahah April Fools! -- or to watch another Buffy episode with either of them, or talk about movies or art or bikes or martial arts or theatre or great plans for the future or how to deal with college?  Like, REALLY?  To never do that again?

Or to never take a yoga class taught by Roger again, or watch for red whiskered bulbuls in the trees on our street, or sit in back eating salmon from our absolutely rocking BBQ, while the water feature competes with the freeway for decibel levels, and my chaotic but beautiful hillside tries to keep making sense of the way I planted it, talking deep into the evening about life and people and philosphy and how to get the kitchen remodeled.

To never do that again?

FUCK YEAH, I'm attached. 

So yeah, absolutely, Buddha.  I say fuck you, because you're right.  All this attachment is causing me to suffer.  It's causing me great joy as well, as I sip every moment of life gratefully.  But, it's causing me to suffer.

Which is why I am writing this blog.  Because it sucks to love it all so much.