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Kathy's Blog



Weblog of Katherine Shirek Doughtie, author. "Aphrodite in Jeans" is a collection of adventure tale essays about men, midlife and motherhood, written by someone who knows a little bit about all three. Funny, poignant, true.



Updated: 2016-07-27T05:48:32.969-07:00

 



Announcing new blog!

2014-04-26T17:57:35.555-07:00

Happy to announce that we've set up a new blog to honor the shift in content.  It's called "Living into the Answer: My journey with breast cancer and beyond."

All new writing will be posted there, for the foreseeable future.  AIJ will still remain active and available.

Thank you for your interest! 



Pain Management: Part 1 (Post op)

2014-04-26T13:33:40.312-07:00

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)

2014-04-26T13:33:08.966-07:00

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)

2014-04-26T13:26:52.444-07:00

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)

2014-04-26T13:25:24.249-07:00

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 sophisticate 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 i[...]



Pain Management: Part 5 (The Home Depot sidebar)

2014-04-26T13:36:21.915-07:00

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)

2014-04-26T13:19:19.773-07:00

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)

2014-04-25T11:13:15.533-07:00

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

2014-04-25T10:15:40.087-07:00

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

2014-04-23T11:39:57.075-07:00

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 solvingUse of my skill setWriting EditingBody:SleepGood eatingExerciseYogaBicyclingWalking SoulMeditationBird watchingSocializing with good friendsCookingGardeningReadingWatching good content Other:Meaningless stuff that just wastes my timeUnavoidable - 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 hig[...]



10 things I've learned so far

2014-04-22T10:26:01.542-07:00

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

2014-04-20T09:00:45.649-07:00

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

2014-04-13T08:19:20.418-07:00

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

2014-04-13T07:36:32.241-07:00

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

2014-04-09T12:56:41.641-07:00

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 deter[...]



It Ain't Necessarily So

2014-04-06T22:37:26.778-07:00

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)&nb[...]



Freaked out howling

2014-04-02T23:02:05.098-07:00

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 [...]



Fuck You, Buddha

2014-04-12T15:10:11.679-07:00

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 futu[...]



Healing Light

2014-03-31T08:06:09.835-07:00

There is nothing in the world, except maybe sailing, that surpasses the feeling of a good bike and a good bike ride.In the 1980's, I bought a Centurion 10-speed which I rode all over the place. It was black and red and yellow and was bad-ass in a totally classic and classy way.  It had dropped handle bars that I retaped yellow, and I had a little mechanical odometer on it that I loved to watch accumulate the miles.I named it Healing Light because it got me through a period of time after a car accident.  I loved that bike and the healthiest I ever felt in my life was when I would ride it from my apartment in Silverlake, up over Griffith Park Boulevard, down Los Feliz, enter Griffith Park from the south, and then pedal from the train and pony rides on Los Feliz, over to Travel Town, and back again.Glorious.I'd ride with my Walkman tucked in my backpack and ear plugs in my ears, marveling at the technology, listening to a cassette tape either of Quicksilver Messenger Service (Happy Trails) or the latest Grateful Dead (Touch of Grey).  Heading towards Burbank I'd be riding into the setting sun during the summer, the yellow gold blinding me so I'd ride head down, getting the angst out, pumping as hard as I could past the zoo, the picnic tables, the train shop.  After turning around at Travel Town, (and flipping the cassette over!),I picked up speed on the downhill grade, all warmed up, angst out, sun to my back.  I'd take the series of hills at full tilt, shooting up them with accumulated momentum, and then picking up more on the down.By the time I got home, I was sweaty, exercised, exhilarated.  My cells thrummed with absolute health and harmony.  The endorphin high was magnificent, and my body took to it with great gulps of appreciation.Those were good years on the bike.  I did a 50 mile fun ride at one point, which it almost was (fun).  Actually it was, and I've always been glad I did it.  Then there were kids and soon I was the one teaching them to ride, and not doing so much myself.The first Healing Light was stolen from my garage about 8 years ago.  I went and purchased, without much enthusiasm, a bike that was better suited to my advanced years.  It had straight handle bars and hybrid wheels.  It was a sedate gray.  I could sit upright and be more, you know, middle aged and female. The handlebars were never quite screwed on tightly enough.  It performed with all the grace and alacrity of a tractor.I may have ridden it five times since I bought it.  In today's vernacular, it was a solid "meh" bike.  Just...meh.  I spent good money for it, I appreciated it as a transportational modality.  And I just never rode it that much.When I was diagnosed, Spencer (full on hipster with a green and black fixie) said that what I need in my life is a new bike.  I'd never, seriously never, considered that before.  I had never, actually, noticed that I didn't ride the old bike that much.  I thought my issue was with bikes and age and deterioration in general, not that I possibly just didn't like my bike enough to ride it.  The day I told him, after my MRI, we went up to a bike store on Fair Oaks.  Filled with bikes and gear and accessories made of the most highly engineered materials, in all shapes and colors, and all with price tags that represented (literally) the price of a college education in the late 1970s.I was captivated.  After I stopped hyperventilating about the first price tag I turned around, our sales guy (about 12 yea[...]



Ebbs and Flows

2014-03-30T03:30:47.041-07:00

Super tough day on Friday, precipitated by a consultation with the plastic surgeon.  She is great; I like her a lot.  But the process... yeesh.  A bit hard to fully ingest in one sitting.I won't go into the details here and now.  There was something about looking at pages and pages of pictures of scarred breasts, however, that really hit home.  The scar is just a sliver, a line.  Clean and precise.  But coldly impersonal.  Clinical.  Surgical.  It was like looking at mug shots, where the strip of black covers the person's eyes. Eradicating individuality.The psychological aspects of this are pretty profound.  In a very good way, getting cancer in a breast must be one of the best places.  It's pretty much a non-functional organ (for those of us over 45) (hopefully), so the cancer doesn't impede its daily business.  I don't feel sick.  It's not affecting my digestion or my breathing or my swallowing or anything like that. However, people rarely mourn the loss of their gall bladder, at least cosmetically. You don't look at yourself in the mirror and say, wow, in two weeks I won't have that gall bladder any more.  Whereas with this thing... you do.It's tough.  It's tough in deep subterranean ways.  It's tough even though it's Stage I.  It's tough even though I'm not a woman who spends more than 30 seconds every day picking out what to wear. It's tough because I alleviate anxiety by working.  I cannot sleep anymore, at least not with some help from outside sources.  If I wake, I stay awake, running through the endless list of things I need to be doing.   Or I'm up until 1 am fueled with a seemingly bottomless supply of buoyant energy, an energy that is borrowed at an extremely high interest rate from the next day.My worklife is ludicrously fubar, a perfect storm of stress and futility.  I am being battered against a hard deadline for a big release after the loss of the second writer on the project, using a new development process, and inundated by a daily tsunami of emails containing unclear communication, insufficient information, requirements for even more work, and follow up that always requires more follow up.  Instead of covering one team, as the system is designed to be set up, I'm covering five.  Instead of writing one product, I'm writing three products.  As I've been joking: the only thing that could be worse in this scenario is if the sole writer for all of this got diagnosed with a life-threatening illness.Nighttime is the worst.  I can slip into these utterly blissful black holes of sleep, only to wake up and feel consciousness knocking insistently at the edges.  I try to force it out, but there's too much of it these days.  Too many things to categorize and list.  Too many unanswered questions and things I know I cannot do anything about, without the ability (at 3 am) to rise above, remember to breathe deeply, and get past it all.It's tax time.  There are words to write.  Projects around the house that have been put off for years that just rankle as I scan my eyes across my domestic landscape.  Ongoing bills and checkbook balancing.  Looking at these things, making the lists, calculating how much time all this dumb brute labor will take... it deflates me.  Deflates me in a way that only doing it can relieve.  And yet I cannot, and should not, be spending all my time working right now. I need to rest, and I can't[...]



The "I'm Special" Falacy

2014-03-28T10:14:21.104-07:00

Of course we're all special.  We are unique.  We are fabulous.  All that.But there are moments in life where we are graced, with a big fat slap in the face, with the profound realization that we are also NOT special.  In Law of the Desert Born, I wrote a line that said "You can die out here just like anyone else."  And that line came from a time when I was much younger and went through a very scary situation and realized, absolutely and realistically, that I could die out here just like anyone else.  I was not special.  As much as I wanted to be, I simply wasn't.I'm going through a second such time right now.  And I'm watching how my brain wraps itself around this news, and how my brain (under normal circumstances) has created a lovely cocoon of denial to prevent exactly this understanding.Here are my "I'm Special" mantras: I work hard on all fronts.  I am paying it forward ... and nothing can happen to me.I am a good mom, and wife, and daughter, and friend.  My love for the people in my life, and theirs for me, will win the universe's heart ... and nothing can happen to me. I'm pathologically honest.  Good brownie points ... so nothing can happen to me.I come from good Polish stock.  We are invincible slavs ... and nothing can happen to me.I am a source of very good stories. This is one of my favorites, the Scheherazade mantra, in which the universe is going to keep me around long enough to keep it amused... so nothing can happen to me in the big picture because it's just so fun to fuck with me on the daily stuff.I rarely drink and never to excess, I don't smoke, I've never even colored my still-mostly-brownish hair.  My body is young and therefore invincible.Here's where else my mantras go, as I use the "I'm Special" falacy to avoid actually taking super good care of myself.I'm married to a yoga teacher... therefore I don't need to take yoga.I'm married to a meditation teacher (same guy)... therefore I don't need to meditate.I have no cancer in my family ... therefore I don't need to eat well.All those statistics are for other people.... Therefore I don't need to wash insecticides off the apples, and worry about environmental and dietary stuff, and maybe I'll even have to stop sniffing glue. You get my point.I'm a good person, a hard worker, a story spinner, an opera company upholder.  I'm not obese, I try to exercise once in awhile.  I try to take care of myself pretty well.  I mostly feel pretty good.  And.And the rules still apply to me. Even though I'm basically a healthy and industrious and moral person.  Eating well is still mandatory.  Exercising my body, is no longer a self-indulgent luxury.  I've gotta do it.  Or just accept that I'm opening myself up to doing this again and losing every possible moment that I may be graced with on the planet.And there's also the luck of the draw, which could take all that hard work and just choose to ignore it. I'm not saying I got cancer because of all the Cheetos I have eaten on road trips (although the thought crossed my mind this morning and I seriously would have to weigh whether I could give those up forever and ever and ever.)  It's just that sometimes things happen.  And that's the final reality of the situation.  We can do all these things right but, ultimately, we are all going to die.  That's the ultimate "I'm Special" Falacy.  We are of course all special, and so wonderful, and so heartbreaking[...]



My surgeon's notebook

2014-03-27T19:32:15.581-07:00

I knew I'd be OK when my surgeon brought out this HUGE, beautiful, pink (of course) notebook for me to use.  In it is a ton of actually useful information, including maps, procedures, diagrams, an insert in which to keep all the relevant business cards, a pamphlet from the state of California, descriptions of all parts of the process, and information for all sorts of outside resources.I sheepishly put my green spiral binder to the side and held the big beautiful pink one on my lap.  Someone, somewhere, is thinking about the patient experience.It's good that they are.  Because the patient experience is profoundly unnerving.  There's something that happens when you put on that gown that eliminates your identity, your spunk, your nerve.  You become a large piece of organism that people are now scientifically interested in.  The ultimate Buddhist lesson of no-self.  This is not me.  I am not it.My body is now a collection of cells.  Most of which are functioning at a very high level that benefits the organism as a whole.  Others are also functioning at a very high level, but in a way that does not benefit the organism as a whole.  (Hmm.  What does this remind us of?  The work place?  The family?  Non-profit arts organizations?  Our own psychic landscape?)I have four doctors now who are interested in getting the non-helpful cells out of my body.  I do find it interesting that the non-helpful cells are really just doing what they need to be doing.  THEY think they are doing a good job.  THEY think they are going to be able to do this forever.  THEY are following their destiny.  But what they don't get is that, if they follow their destiny to its ultimate fulfillment, they will kill their superstructure and their whole world will be totally hosed.Why do the little rebel cells not get it?  Why doesn't everyone understand that working together is far more beneficial, as a whole, than following one's inner compass when it's pointing in the wrong direction?Going deeper... those little expanding invasive cells, they are just kind of going a little awry.  Isn't the bigger problem that conscious brain that drives us to guilt, and anxiety, and overwork, and self-aggrandizing anger, and destructive behavior, and wrong action -- all the things that damage us on a cellular level?The homunculus -- the little man of consciousness that sits up in the brain and thinks he's running the show -- that guy who pulls the levers and pushes the buttons and makes it his job description to tell our brain that he's totally in charge -- why does he not always get that it's in his best interest to work towards the benefit of the organism of the whole?  We go/he goes.  Our brain shuts off, and his job of providing consciousness and direction to our lives is over and he's back on LinkedIn sending out his resume.  It's in no one's best interest to actually undermine the health of the organism as a whole.That guy, that consciousness, desperately wants us to believe it's in control.  Isn't he a bigger enemy than those little cells?  And maybe those little cells are following in his footsteps, believing that the end is near all the time, twelve minutes till doomsday, or that that motherfucker in the Toyota in front of us should've used his motherfucking blinker, or -- worse -- that we are unworthy of taking care of ourselves, that our job is to shut up and [...]



My notebook

2014-03-26T19:49:42.283-07:00

This is kind of a how-to post, for people who know people who may be in this awkward situation.  Just wanted to note what I've been doing to alleviate my anxiety and prepare for my appointment this morning with my surgeon.I bought a breast cancer notebook, on the advice of my doctor.I got a 100-page college ruled spiral bound green notebook (not pink because, really, enough), with a two sided folder page in the front so I can tuck in CDs and other bits of paper I might need to keep track of.  I wanted to go light enough that I wouldn't curse my life carrying it around.  I wanted a folder for the stray bits.  I wanted college ruled because I love college ruled.  I did not go crazy with three rings and dividers and decals and collage visualizations and stuff like that.  I could have but I'm just too busy on other fronts.On the first page, I have all the contact info for every doctor (surgeon, OB/GYN, general practitioner, and eventually oncologist) (and by the way have I mentioned that I'm getting tired of this story, and these words and this whole new project that's been dumped into my lap?).  Also on that first page are the pharmacy, the breast center, the imaging center, and mine, Roger's, and a few other friends' numbers, just in case someone has to call someone and I'm, you know, unavailable.On the second page I've started my list of questions to ask the surgeon today.  I headed the page with the name/time/date of the appointment so I can refer back to it, and then, over the next few pages, I just wrote a bunch of questions, spaced out so I have room to answer them inline:Are the lymph nodes involved?If so, how many?How much involvement?Either way, what does this mean?Can we tell what type of tumors we are looking at?How many are there?Are the lobular or ductal?Are the in situ or invasive?How long have they been there?Are they fast moving?Do we know what caused this?What is the recommended treatment plan?(Lots of space open for the answer for this, plus the back of the page)(Because I don't want to go down a bunch of scenario rabbit holds, I've left this one open ended.  The superstitious part of me feels that even dwelling on all the worst case scenarios will some how make them happen.)If reconstruction is going to happen:Will it happen at the time of the first surgery?How many surgeries am I looking at?If we can conserve the breast tissue:Does she recommend taking tissue from somewhere else?If so, from where?Implants?Will radiation be needed?What to expect?Duration of suggested treatmentTypeProsConsWill chemo be needed?TypeProsCons(You will also note that, even though I didn't want to go down a rabbit hole on page three, by pages four and five, I was down there with the mad hatter and the red queen.)How best can I take care of myself pre-op?What will surgery be like?How much discomfort will there be afterwards?For how long?What happens after surgery?What should my diet be like?Currently it is going like this:No sugarNo dairy, except a little butter for cookingAs much dietary fiber as possible (30 g/day is goal)No caffeineNo alcoholHow does she weigh in on the soy controversy?What weight should I be aiming for?How much exercise should I shoot for?Currently shooting for 30 minutes/day, 5 days/week.How soon will life be normal again?Should I get an oncologist in place pre op?I am planning on getting a second opinion.  How does that work?What are the risks of recurrence?[...]



Only in the leap from the lion's head will he prove his worth

2014-03-25T00:07:18.576-07:00

In Buddhist philosophy there is the concept of "right action." Strictly speaking, it is referring to following the other precepts along the Eightfold Path and refraining from killing, stealing, misuse of sex or intoxicants.  I've always thought of it in more personal terms.To me, right action is like that moment in one of the Indiana Jones movies where he has to cross this huge chasm. I may be remembering this incorrectly, but I think this is how it goes: he can't see a way across the chasm until he puts his foot forward in a total act of faith, and then, magically, a narrow bridge appears.  Balancing on that, he has to put his other foot forward in a total act of faith, and then, magically, the bridge extends and he tenuously crosses the chasm.In my life, this is more what right action feels like.Whenever I've made a really big decision that stemmed from all the right values for me, or even when I'm making smaller daily decisions that are also stemming from the right values, I feel like I'm in that zone of right action.  Things work better for me.  I am the Ferris Beuller of the world, with doors opening and closing at the right time, and the mechanisms of the world conspiring to make my life easier.Conversely, when I'm not in that zone and I'm doing things for the wrong reasons, or am totally ungrounded and unconscious, then things all tend to go wrong.  Doors slam in my face, my toes get stubbed, the computer starts acting up, all the traffic lights are red.We all know what that is like.  And we all know what brings on the red traffic lights.  Living too fast, working too hard, getting too angry at others and ourselves... we start spinning out of control and the annoyances keep mounting up. For me, it usually takes getting sick and having to reboot for a day or so in bed to discharge all that accumulation of bad juju and get back to a baseline.Apparently, I am really needing it this time around, because apparently I am really sick.I'm in this place of rebooting down to the very core basics.  And I am feeling really good because I'm doing the right things for myself.  I am eating really well -- real food, with a minimum of meat and dairy products and no sugar.  I am exercising daily, with at least 30 minutes of walking and usually more.  I am taking myself to Descanso to breathe in the unspeakably sweet air of spring, sparkling with lilac and wisteria and freshly watered lawns.  I am taking time to watch more birds and write more words.  I did yoga twice last week.  I am brushing and flossing and taking my herbs and supplements.  In short: I am taking care of myself diligently.  And I feel just so much better than when I wasn't.  And I'm no less productive, and probably even more so.  So it's not a matter of time and leisure.  It's just obvious that everything goes better when I'm taking better care of myself.Since I know what I need to do to make myself feel this good -- why don't I do it?  Why does it take a huge crises and more than a whiff of mortality to shake me up enough to actually do the things that make me feel better?  To put it another way, why do I continue to do things that don't make me feel better?  What is the benefit in that?I'm not sure we really think of it in terms of a binary choice, actually.  It's not like we wake up and t[...]



Waiting

2014-03-22T08:13:25.042-07:00

From Letters to a Young Poet:... and I want to beg you, as much as I can, to be patient toward all that is unsolved in your heart and to try to love the questions themselves like locked rooms and like books that are written in a very foreign tongue.  Do not now seek the answers, which cannot be given you because you would not be able to live them.  And the point is, to live everything.  Live the questions now.  Perhaps you will then gradually, without noticing it, live along some distant day into the answer.Rainer Maria Rilka(courtesy of Jane Murphy)So we are waiting. On Tuesday, Roger and I will be going to my new surgeon to talk about options.  We will get the results of the MRI.  We will learn about what surgery she recommends.  We will make a plan.In the meantime, we don't know.  I am greeting the not-knowingness with a little bit of relief.  Last weekend, I was between the biopsy on Friday and the results on Monday.  The spectrum of possibilities was very wide at that point.  80% of biopsies result in a negative test for cancer, so most of the time I fixed on that statistic and told myself everything would be OK.  But the range of options in that remaining 20% was pretty extreme.  The far end of the extreme was unthinkable.  So when my brain went to that side of the chart, I was pretty freaked out.So this weekend we have another set of options to not know about.  I am convinced that we are a much safer distance away from the Abyss at this point.  That, as uncomfortable and weird and life changing as this whole this is going to be, it will ultimately result in my living a long time into the future. So the waiting is now about wondering how long this will take, when it will start, how much pain will be involved, how much the pain killers will work, what I will look and feel like when it's all over, whether I will be permanently appalled by or resigned to or even happy with my new body, and (at the edge) whether there's something we don't know about that will become a new indelible game-changing fact on Tuesday.All in all, it's a better weekend.  Even though we know what's going on, these are a better set of options to worry about.In the meantime... man, there's a lot going on.  This is all not happening in a void.  Remember my life?  The life I had eight days ago?  The life in which I was two weeks behind on a project due in three weeks, doing two people's work because the writer I used to split the work with quit a few weeks ago?  Remember the stuff about the opera company, and all its trials and tribulations and petty squabbles and financial troubles?  And the part where I have a family I never am able to spend enough time with?  And the part where there's always a good story brewing about some new drama or another that keeps me OH so busy?  Well, that life did not apparently get the memo that this cancer thing is going on.  The release schedule has not changed, the writing has not written itself, our new writer has not magically gotten immediately up to speed (although she's assimilated more in the first week than many have in the first two months), the opera company did not suddenly get functional, the bills are not paying themselves, and (yeah, by the way) the tax figures are not automatically populating the worksheet for our accountant.Can't[...]