Healing Light

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 years old) led us back to the way back corner, where the, you know, more affordable bikes were kept, i.e., those in the low, not mid, four figures.  He pointed one out to me and, yes,  there it was.  The bolt of lightning.  The Moment.

It's a Specialized Dolce Elite Compact EQ.  Black and red.  I rode a model that they had in stock that was my size around the block.  It was like flying.  It was like flying a stealth bomber as opposed to Kitty Hawk.  It was like sailing a racing boat rather than paddling a dingy with my hands.  It was magnificent.

I shopped around.  I took my time, a little bit.  But I knew this one was The One.

Picked it up yesterday, fully equipped with front and back lights, new center pull brakes, and a new lock.  Red wrapped dropped bars.  Totally bad-ass in a classic and classy way.  I put on my new helmet, my new gloves (thank you, Roger), rolled up my right pants leg, and took off to the office. 

Glorious.

Riding home yesterday evening, I took the back roads I used to ride on when I was growing up here in high school.  Past the big stately grounds of the San Marino mansions, past the lovely enclave of Lacy Park, up Old Mill Road (appreciating the gearing ratios immensely), down Mission, and up to my house.  Pedaling into the setting sun, bathed in healing light, feeling so incredibly good in my body and my soul.

Pure joy.

I can't wait to get this other stuff behind me.

Ebbs and Flows

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 rest, at least not at the right intervals.  I am forcing myself to spend the time to do the yoga, take the walks, eat the right foods, do the right thing. There simply isn't enough time to do all of it; and the imperative is to do what has always come so unnaturally to me.  Despite years of doing the opposite, I need to take care of myself first.


So that's how it is these days.  A kind of soul-constricting anxiety and fatigue alternating with these incredible bursts of energy and gratitude, fueled by the good will and support of all my friends and family.  Mostly it's the latter.  And I don't at all feel crushed by despair or anger or guilt or anything like that.  Just this kind of nightmarish urgency to slog forward despite the continue slippage behind, to clean up the disorder, to make right the things that I can make right.  To control the 1% of stuff I can control.  And to accept the 99% percent that, these days, I cannot.

The "I'm Special" Falacy

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 heartbreakingly unique.  But none of us are special enough to escape that.


I'd love to end this on a happy upbeat note that implies that if we're all better people this won't happen to us and the people we love.  But, unfortunately, that's how it will all work out.  It just is.  I guess the takeaway is to keep that perspective in mind, do the best we can in the meantime, and try to enjoy the ride.

For now, however, I'm going to go back to work.  And then I'll call my mom and check up on her.  And I've written a story today, so that's taken care of...

My surgeon's notebook

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 row the boat like good little oarsmen, that there is no time to stop, to rest, to just BE.

In our bodies we have millions of things going right.  But we have this ego/self/consciousness sitting in the control booth feeding us stories that it absolutely needs us to believe.  And we have a few rogue cells inside of us that, maybe, are taking those instructions seriously, ignoring their common sense and the obvious logic that killing the host is no good for the community as a whole.

Thank god for outside forces, like doctors, whose destinies and expertise are all bound up in taking care that the multitude of good cells prevail.  Thank god for outside forces, like meditation and yoga and nature, that teach us to step outside of the ego/self/consciousness' stories long enough to question its motives.  Thank god for all the multitudes of internal forces that continue to work for the good of the organism.  And thank god that the homunculus can sometimes be humble, and learn his lessons, and accept that maybe, just maybe, the former approaches might be self-destructive and that tomorrow we're going to get up fresh, try it again, only a little differently this time.

This life.  This sweet and precious and incredible life.  It is so totally painful and messy and convoluted and stressful.  And, at the very same time, it is so exquisitely beautiful and sweet and poignant and challenging and exciting and full of love.  It is both.  It is the rogue cells and the good cells.  It is the misguided egotistic homunculous and the inner workings of harmony and health.  It all goes better when we work together -- when the little green notebook works in concert with the big pink notebook.  It all goes better when can ride the wave of the inner rhythms, ignore the dire prognostications, and energetically work in concert with all the things that are going right with the world.

My notebook

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 treatment
• Type
• Pros
• Cons
• Will chemo be needed?
• Type
• Pros
• Cons
• (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 sugar
• No dairy, except a little butter for cooking
• As much dietary fiber as possible (30 g/day is goal)
• No caffeine
• No alcohol
• How 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

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 think, hmmm, I'll make really bad choices today knowing full well that they could impact me negatively down the line and I'll wake up one day really regretting all the times I chose not to exercise, or to have that extra Fatburger, or to put off that mammogram an extra few months.  I think we wake up and kind of think we have an infinite amount of time.  I really do understand that I should take better care of myself -- emotionally, creatively, physically -- but I'll do that later.  I will give now and replenish tomorrow.  And there will be plenty of time for both.

It's the downside of our incredible skill at being able to ignore our limited time on the planet.  Since we have convinced ourselves we have an infinite amount of time, we tend to do the easy things instead of the difficult things, or the things for others instead of ourselves, or the quick things instead of the things that will take some thought and time, or the wrong things which we will atone for later, or the fun things which we will take aspirin for in the morning.  We make our choices not always based on right action for this moment, but based on what we feel is right, or get-awayable-with, for right now.  Which would be OK, if we truly had an infinite number of days to get the other choices made as well.  But we don't. And we have an incredible ability to not remember that fact... ever.

Well, hardly ever.

In my current state of upheaval and uncertainty, I have been (mostly) acutely aware of the limited amount of time we all have.  And this fact has been amazingly potent.  It strips away so much bullshit from so many things that usually plague me.  It is so much clearer to me these days what truly matters, and what truly doesn't.  My constant striving for perfection is replaced by an acceptance of good enough.  My annoyance at petty irritations at the hands of other people, is replaced (most of the time) by a sense of compassion and a renewed visitation of the current moment. 

To me, this is right action because it enables me to hear what's going on in the present moment and make my choices according to the unconscious ebbs and flows of unseen forces.  I had an incredible moment this weekend when, after doing some work for my mom at her condo, and then spending a little time with my girlfriend Jane, I decided to go to Descanso for a walk instead of going to work immediately.  At Descanso, I took a meandering series of paths, trying to get into the more remote corners of the acreage and away from the hordes of Cherry Blossom festival attendees.  I didn't have a sense of time or of urgency and I really enjoyed my ramblings, ending up at the duck pond to check out who was in town this weekend.

And there I ran right into my doctor.  My beloved, wonderful, woman doctor, who is funny and down to earth and harder to reach than the Pope.  To actually see her, in the flesh, and have a conversation with her was the thing I absolutely needed more than anything else in the world at that moment... and because I had been attuned to those mysterious ebbs and flows, we converged in the same place at the same time.

She told me that, without a doubt, I'd be fine and emerge from this (relatively) unscathed.  She said it would be a magnificent hassle but that I would look back on this in ten years and barely remember it happened.  She had seen the MRIs, the results of which I won't know officially until tomorrow, and told me that the left side was perfectly clear.  That was a huge relief.  She said that maybe kind of sort of  there may be something in a lymph node, but it was impossible to tell.  I don't know how much time she spent looking at this, but we'll be seeing my surgeon tomorrow and will know all of this in detail then.

She also told me how to arm myself.  Get a second opinion, she said.  That's just good diligence.  Also, get a "nerd notebook" to put everything in.  Get CDs of all my records and have them at hand.  Keep lists and questions and answers and contact numbers.  Ask the surgeon if you should see an oncologist before we "drop the knife."  (I love my doctor.)  Ask everything and write it all down so you can feel like you have as much control as you can over an uncontrollable situation. 

It was great.  She said Poor baby, and hugged me and assured me a dozen times that it'd be fine.  And, talking to her, I knew it would be.

Right action.  I followed the stones over the chasm the right way that day, and was rewarded.

Today... I pretty much didn't.  I worked too hard, I got too tired, this sustained energy over this issue is starting to drain me.  One week post-diagnosis, I woke up thinking "OK, I'm done with having cancer.  Can we move on now?"  And of course we haven't really started. 

Tomorrow I will go see the surgeon.  A woman surgeon, which makes me happy.  She comes well recommended.  I will book a second opinion at City of Hope.  I will continue to eat right and walk and stay in that path of right action as best as I can.  It's 10:40 pm and I haven't smelled the outside world since my early morning walk with Sam.  I think I'll go and revisit it again now before I try to sleep.

Waiting

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 it all just STOP?  I mean, you know, not permanently.  But there's so much more going on now on top of the usual -- telling people this news takes time, seeing doctors and making schedules takes time, figuring out what to do takes time.  AND eating better takes time, and exercising more takes time, and taking care of myself takes time.  Somehow I'm being forced to learn the next level of time management skills: how to say no to things I really want to do, with people I really want to see, and make some time to NOT do anything, and to just turn it off.  I'm not good at this at ALL.

These, ultimately, are good problems to have.  I am greeting even things like taxes with a new affection because it means that I'm still alive and still planning on being alive.  Taking care of myself feels really good.  I am also able, sort of, to look at the tsunami of work that is bearing down on me and consider the possibility that it won't get done, it can't get done, and that somehow something will work out that will make it OK for my business to get a release out the door.  I guess maybe I'm being forced to let some of it go.  Maybe.

So today I'm going to take care of my mom's condo in the morning and then make time to go take a walk around Descanso.  I am then going into work and trying to shut down all electronic inroads (and outroads) so I can make some order out of my massive to do list and start actually doing some of it.  It will be quiet.  I will have my music on.  I will try to do just that, and not talk, and not deal with emotional stuff, and just be present with the concrete and technical aspects of my job.  And let the rest go.  And continue to learn some of these hard new lessons this thing is teaching me.

My story

I have a profound disconnect in my life these days:  This is not my story.  This is my story.

I was never supposed to get cancer, let alone breast cancer.  No one in my family has it: that's been my mantra for over 50 years.  This is not going to happen to me.  My story is going to be a heart story.  All my people die of broken hearts.  We are too ornery and emotive and crazy to stagnate into cancerous implosion.

This was not my story.

This is my story.

I can't say I knew it was happening, because I didn't.  I have always been lumpy.  I'm more so now after finally hitting menopause.  Since this was not my story, I didn't worry about it.  I was casual about making my mammogram appointments.  Not too casual.  Just like six months overdue casual. And when I got called back this time, that was OK.  I was called back once years ago, and it ended up being fine. And the letter said almost all call backs are nothing to worry about.  So I didn't worry.

I went into the call back and went through the second round of mammography. Then the ultrasound.  I got a little nervous when she stayed in one quadrant for quite a while.  Now that I'm a seasoned expert, I know I should have gotten even more nervous when she started checking out my arm pit. Who knew from lymph nodes?  This was not my story.

Then, finally, I got the information. There was something suspicious.  Five somethings suspicious, as it turns out. They said I needed to check them out.  They were able to do the biopsy immediately.  So we went ahead and did it.

At this point, I started listening very carefully to the words I was hearing.

They did not say they needed  to do the biopsy immediately.

They said they could do the biopsy immediately.

So we did the biopsy immediately.

It was not especially fun. And since it was a Friday, I had an entire three days to contemplate a whole variety of stories, none of which were light or easy.

Most of the stories I spun came out of a newly vivid contemplation of the Abyss.  The Abyss we all know about, and laugh about, and watch on TV, and read about in the news. I'm not sure if I'm the only one, but the Abyss is something I've only really contemplated in terms of other people. They die. I don't.  I'm the survivor, the rock, the machine, the invincible, the indomitable.  God would never let me die if only to continue fucking with me for as long as possible.

I am embued with superhuman qualities, I tell myself as I slog through my days. I'm a fucking STAGE MANAGER.  Stage managers never die; they just call another show. And they spend their days putting out fires, fixing problems, organizing the actors on the stage of life.  And I'm many other things.  I'm a writer, I'm an editor, I'm a wife, I'm a mother. I am a Hopi Kachina doll with dozens of little children perched all over me, waiting to hear my stories.  I am Artimis with a dozen breasts feeding the world.

And one of those breasts is sick of it.

So sick of it that I could be facing a place where I don't get to feed those mouths anymore.  I don't get to fix those problems any more.  I don't get to complain any more.  I don't get to work late any more.  So sick of it that I could be facing a place where I don't get to take any rare time off to stop anymore, either. No more walks through Descanso Gardens.  No more pursuing truth in the company of friends. No more opening nights at the Ahmanson. No more lunches at Rotisserie Chicken.

Not one more moment of being with my boys.

Not one more meal at that little Parisian cafe with Roger.

The Abyss just gets wider and wider.  More and more awful. Intolerably and inescapably awful. Suddenly this was my story.  Or my potential story.  It could be the Abyss.  Or it could be just fine.


I ran through the entire range over the course of the weekend. I ended up fixating on the just fine scenario.  We live in a world of for-profit healthcare.  I'm part of the machine now and they are going to play on my horror of the Abyss and over process me for awhile.  Take more biopsies because these were inconclusive.  Do more tests just to continue wringing more cash from my insurance company. That's what was going on, I convinced myself. Absolutely. I am part of The System and it will play itself out and it will be nothing.

But it wasn't.

It isn't.

What it was, was the biopsies testing positive for cancer.

What it is not, apparently, is immediately life threatening.  It looks like it hasn't spread to the lymph nodes.  This is a very good thing.  It looks like it is highly treatable with surgery.  Great: get out the knife.  It does not look like an emergency, or so they tell me.  I am getting the MRI done today and we will learn more.  One step at a time.  Bird by bird.

There's a ton to write.

There's a ton to do.

But this is what I'm suffused with right now: an overwhelming, palpable, almost euphoric sense of gratitude. The love that's been pouring out of the world towards me has been unbelievable. The support I feel from the small subset of friends and loved ones I have told is palpable. I am lucky and grateful for every day I get to slog.  I am lucky and grateful for the ability to have small talk and figure out who will walk the dog this time, where to put the spring color in the flower beds. I am lucky and grateful for an acupuncturist and friend who was moved to tears when she heard, and then set to putting her formidable skills to work to keep me alive. I am blessed with an incredibly wise and sensible and caring therapist who has been through more of these types of scenarios in a lifetime than anyone should be asked to think about.  I am lucky and grateful to Roger, my rock and lover and best friend and ally, who is taking over the role of being the level head in the family. I am lucky and grateful to my son who is going to take me to Whole Foods this weekend to help us stock up on healthy things to eat.  I am lucky and grateful to have another son who took me bike shopping yesterday, figuring (correctly) that riding good bike is as close to heaven as it gets on this earth (and as close as I need to get right now).

I am grateful most of all because I now am, finally, putting myself first in a lot of things. I am eating better.  I am exercising more.  I am going to yoga again.  Even after a few days, I feel absolutely fantastic in my body.

I am grateful, intensely grateful, that I am learning these lessons.  A tad later than preferable, but I'm learning them.  And I'm determined that these lessons will see me through for the next forty years or more.

So that is my story these days: Gratitude.

Intense.

Profound.

Gratitude.