It Ain't Necessarily So

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


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

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

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

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

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

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

The unknown will be known in its own time.  

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

Which ends us up with this equation:

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

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


Thank you, Bridget.  Good stuff. 

Freaked out howling

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Fuck You, Buddha

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

Fuck that.

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

You get my point.

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

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

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

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

To never do that again?

FUCK YEAH, I'm attached. 

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

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