Junk Time vs Whole Time

One of the things I realized when I was diagnosed is that there is a huge difference between eating well and not eating badly. I have always figured that, since I don't eat french fries with every meal, that I was a pretty good eater. I always was a few pounds overweight, nothing terribly noticeable (or at least so I told myself), and I never had any digestive or other issues. Ergo: I'm eating OK.  Basically, I only watched it when I was really unable to fit into my jeans comfortably, and other than that I tried not to overeat, over drink, or over stress about any of it.

Then this cancer thing happens. My risk factors were few: no cancer in my family, maybe a little bit overweight, and maybe not enough exercise. Maybe my nutritional needs could be met a little better. But even though these were all small issues individually, these were the things I could control... as opposed to the air I was breathing and the plastic bottles and the food additives, etc., that I could not.

So I started looking at nutrients, and the nutritional value of what was being put in my body. And what started to become really clear was that -- to really get the most nourishment out of food -- you have to eat a lot of it, and a lot of different kinds of it. And in order to do all that eating to get all those nutrients, you can't be full of stuff that gives you nothing at all.

Bye bye chocolate croissants.  Bye bye plain croissants.  Bye bye sugar and bye bye white carbs.  Bye bye dairy and bye bye, basically, to everything that did not nourish me directly.  And hello to everything that did.  So hello to protein, and hello to lots of vegetables, and hello to water, and hello to fruits and seaweed and nuts and even more vegetables.  Hello organic when possible.

Make sense?  The more you use up your appetite with stuff that doesn't do you a lot of harm (but doesn't do you much good either), the less able you are to fill yourself up with things that actually do you good, with minerals and vitamins and all that stuff that your body actually needs.

Now, think about this. Time is like our stomach. And how we fill it up can either be positive, negative, or neutral.

Interesting idea, right?

Like, up until very recently, I figured that as long as I wasn't doing actual harm to myself during my waking hours, I was living a pretty fulfilled life. But then there's the concept of doing good for yourself, taking care of yourself.  And how do you have time to do that if you're busy doing things that are, at best, not bad for you?

Don't get me wrong.  I am a big fan of binge watching cable series and scrolling through Facebook. I think there is soul value in those things, as long as they are ingested when the soul is needing that specific type of content.  I'm not being judgmental at all when it comes to, well, anything.

But for me, it's the neutral stuff in my life that I'm looking at these days.  Say, for example, work.  Absolutely, work is very important. For one thing, it enables me to buy the good nutritious organic fruits and vegetables at overly priced fancy markets so that I can take care of my body better.  I get that.  And I also get that this is a very privileged conversation to be starting, because it does presuppose that one has a choice in the matter of work, and that's a very good thing and not something that everyone has.

But... what about work that has neutral nutritional soul value?  Yes, it pays for the organic fruits and vegetables, it pays for the roof over the head, it pays for the gas to get to/from the job, it helps do a lot of things that require money.  But what if you are not doing something that really nourishes you?  What if who you are and what you do are no longer in line?  Again, I know, very few people get to have these questions, and even fewer wake up in the morning feeling fully integrated with their lives.  But hang with me here.

Isn't there kind of a concept of junk time?  Time spent that doesn't nourish?  Time spent that just kind of gets us through to the next thing, but neither intrinsically adds or subtracts much?

What if I could substitute some of that time for time that has more nutrients?  That fed soul and mind a bit more robustly?  What if I spent my time with whole activities... things that weren't fractured by multiple screens and noises and constant switching of mental and emotional channels? What if I  consumed my time in bites that were savored a little more deeply, chewed a little more thoroughly, and spiced with flavors that really were pleasing, rather than discordant and chaotic?

Wouldn't that be nice?  Wouldn't that make my soul a bit more satisfied at the end of the day? 

I want my soul to be sated.  I want it to lean back and belch after a good meal of time, picking at its teeth and savoring the little last remnants. I want it to grow fat and sassy, engorged on laughter with friends and moments of true creation and hours of feeling the sun and experiencing the world fully.  I want my soul to never have to diet, or starve for more things it needs.  I want my soul to be able to feast fully on time, as I spend my days on activities that grow and enhance and inspire it. 

I want my life to be an endless smorgasbord of soul smacking ways to spend my time.  If done correctly and mindfully, I think even the laundry can be given enough room to become a little soul tidbit, a bit of way to connect to family and home. I know it's a dream... but it's an intentional one, like eating only foods that are delicious and satisfying and good for my body to build itself back up with. 

Post Script

I am going to have to admit, I got a little bit wrong yesterday.  There is no denying that a good night's sleep helps.

I got one last night.

It did.

I'm humbled.

So I'm changing my metaphor:  If sleep knits up the ravell'd sleeve of care, then fatigue is the whole damn suit on the floor.  It will take more than mending just a sleeve to put it back together... but it's a start.

Tell Me About It

There are a set of comments and responses that I have found to be especially galling these days. "I hate my life," is one of them.  "I want to die," is another. "Really?" I want to say back.  "Really?  You're saying you want to die because you had a hard day and that guy at the gas station really pissed you off?"  I just want to slap the other person silly when I hear crap like that.  I want to say fine, great, let's switch places, and you go through chemo and surgery and descend into the underworld for days and weeks on end in an effort to stay alive... and then let's talk about how much you want to die. 

Phrases like that are profoundly insulting to someone going through cancer or cancer treatment.  I advise against using them.

Here's today's pet peeve.  "Tell me about it."  One of the most annoying responses ever.  It dismisses whatever the other person is saying and trumps it with a bigger fish story.   So I say, boy, I'm tired, and the other person says "Tell me about it."  And I think... really?  You really want me to tell you about it?  OK, then, I will.

Having cancer and going through cancer treatment is like going through an advanced degree program in fatigue. There are so many layers and types and colors and harmonies and syncopations of fatigue, it's hard to know how to classify all of them.

For starters... fatigue is not the same as being tired.  Being tired is to having fatigue as being a bit peckish is to dying of starvation.  They really shouldn't be grouped in the same category.  Being tired can almost always be cured by taking a nap or getting a better night's sleep.  And, don't get me wrong, I know fully how hard those two things can be. Getting a good night's sleep is as elusive to me these days as getting a good boyfriend was in my 20s, and entering into the mainstream of the day without a good six or seven hours under my belt is hellacious.  I feel like bugs are crawling under my skin as I approach the day like a recon patrol... point to point to point... make it to breakfast, then  maybe to lunch, and if I can make it to lunch maybe I can make it to the end of work... and finally I see the end in sight. It is oh so true. Tired SUCKS.

Fatigue is really different.  And it's not just like being super tired.  It's more like being super tired and knowing that no nap or good night's sleep in the world will ever... ever... help.  Its like being so tired that I don't even try any more to get some sleep, if that makes sense.  I've just turned into this night owl quasi insomniac because the fatigue is so uncomfortable that I don't even really try to sleep through it any more.

There are several layers of this feeling. If the fatigue is in your body, then it's like your muscles have been replaced with quivering bands of aching glue.  Remember those horrible fitness tests in elementary school?  (Well, if you're lucky you did not grow up in the age of torture to children... or maybe they still have them.)  There was one where you had to run 660 yards, or feet, or inches, or miles... I forget.. but it was a number that sounds very close to the mark of the devil and it was H.I.D.E.O.U.S.  Awful.  The worst days of my life were those testing days (Yeah? Tell me about it.).  But, seriously, they were awful.  And at the end of the three or four hours, or days, or years it took me to run those laps around the track, long after all the other little children were at home snug in their beds, long after the person who was supposed to be marking down my time in the little book that made the State of California happy enough to provide funding or whatever to the school system so it could make us do it all over again next year had given up in disgust and left the field and was now on his or her fifth Mai Tai at the tiki bar down the road... that was fatigue.  That feeling in my bones and in my muscles and in my... spirit... that was fatigue.

And then there's soul fatigue.  That's what has been weighing me down yesterday and today.  Soul fatigue has long fingers that go in deep, seeking out the light inside my molecules that gives me a sense of optimism or hope and crushing it like a bug.  It laughs at my resilience and shames it into skulking away into the corner. Soul fatigue comes from month after month of body fatigue, and knows that there is month after month to go.  Soul fatigue has a whole mental component.  Soul fatigue is body fatigue on steroids.  The embers of willingness to go on flicker and dim, flicker and dim.  In those rare instances that something penetrates the gloom... there is a brief lightening... but then it flickers out.  I look at the hideous goblins and wraiths hanging from the trees in my neighborhood, bedecked with spiderwebs and blood, and I think there... there... there is the face that belongs to this feeling.  It's a fatigue so close to death that waking up to the here and now is occasionally surprising, disconcerting.

I haven't been writing much because both these types of fatigue are weighing heavily on me these days.  My body is still recuperating from the surgery, resisting getting fully well by holding on to lingering muscle aches and treating me to random shooting pains and itches and (yes, I'll say it out load) even this weird sense of phantom lactation... as my nerves decide to wake up and spark like downed electrical wires after a hurricane.  The soul fatigue is the worst: I look at my life going forward and see no rest in sight, no possibility for change, no moment where I can hope to lay my head down and find as much true recuperation as I need.  It feels as though I will always be trying to catch up, and failing, and the rest of my years on the planet will be forever in search of a feeling of health, and relaxation, and deep peace.

I do know of some antidotes that work, at least temporarily.  Nature is one of them.  The smell of sage in the sun, the blue of the mountains rising above Altadena, the coolness of fall in the evening air... all good, all things that infuse body and soul with a little extra energy.  Exercise is another.  Walking the dog always helps.  I count the days when I can get back to yoga.  I seem to want to drink in solitude like a desperado crawling across the desert.  When I feel like this, most people drain my battery faster than I can recharge it.  Good content helps -- I'm scarfing down books at night when I can't sleep, and occasionally latching on to a good cable series which I indulge in in big time-consuming chunks.  Writing helps.  And even doing some of the bathroom remodeling project (oh dear god don't get me started with that story... the fact that I am now sealing my own grout at the end of a long day and in the spare moments of the weekends should tell you enough).  Even that helps.

It's not all futility.  There are moments of lightness.  I know I'll get through.  But this is the middle days reality I seem to be in these days.  Fatigue so many layers deep that it has become my constant companion.  The day would not seem complete without that feeling of leaden doom following me around everywhere.  And even though we sometimes share a laugh or two, that ghoul drags around after me, hanging on my flesh and dulling my senses.

So that's what this time is all about. You need a cup of coffee?  Tell me about it.

Sisyphus vs. Squirrel Alley

My life feels like some kind of Greek myth these days.  The heroine has to undergo four trials, each with its own set of obstacles and dangers, and if she endures these trials then... something good happens.  Or, more precisely in my case, something bad (hopefully) does not happen.

I realized tonight, as I was walking the dog back up the hill to the house, that the myth of Sisyphus is also applicable. Sisyphus: the guy who was condemned to pushing a huge rock up a hill, only to have it roll back down so he can push it up all over again.  We all know him; he's the ultimate metaphor for making the bed every morning, washing the dishes, the 40 hour work week. We love him because he embodies futility itself.

I think that the Camus version of the myth is where I got the following theory, but I may have made it up.  I've always maintained that the curse does not come on the uphill push, with the muscles straining and the rock threatening to crush. I've always maintained that the curse finds its true sweet spot when he's walking back downhill, in the consciousness that he is doomed to push the rock back up all over again.  In other words, the doing is not the problem; the thinking about doing is.

In between my four trials I have regained my health, or something that feels really close to it. In between, I walk more and more, I start to bike, I feel better and better.  Arguably, the third trial (chemotherapy) had five separate sub-trials, each one of which had the same cycle: down into the underworld with the infusion, five to seven days of feeling super crappy, and then two weeks of feeling better and better, until the weekend before the next infusion I felt like I was bursting with life and abundance of health.

Like Sisyphus, I also measure my well being in terms of hills.  I live on a cul-de-sac at the top of a moderately steep hill. I can't really walk around the block, so I walk varying lengths of distance down the hill and then back up the hill.  There's a cul-de-sac that branches off from my street that's only a few houses long, and I always dip into there because that's where there are the most squirrels and Sam really loves the squirrels.

On the bad days, I can make it down to Squirrel Alley and back.  Barely.  In the heat of the summer, I would have to sometimes pause and sit on a wall for a few moments to rest my laboring heart and catch my breath.  On the bad days my legs felt leaden, filled with aches and heaviness, and I would trudge through the walk, head down, looking at my feet as I forced them to go one after the other until we were done.

I could always tell when I was feeling better because I would start going one driveway down past Squirrel Alley, cross the street, do the lap around the Squirrel Alley cul-de-sac, and then come back up the hill to the house. The next day I would go one more driveway down and then back up.  Eventually I would make it all the way to the bottom of the hill, twice a day, and then back up... all without stopping except to let Sam sniff and do his biz.

Kind of like old Sis, huh?  Down the hill, up the hill.  Down the hill a little bit more... up the hill a little bit more.  And I have to say that... in real terms... it really is worse coming back up the hill.  Existential angst and consciousness notwithstanding, when the going is tough, it's the tough going that is the problem, and easing up is gratefully accepted.

But in the metaphorical sense, I have to say... I think there is more mental and emotional pain involved in the spaces between trials. As I get healthier I drink in the sensations of feeling good in huge greedy gulps, altogether aware that the feeling of vitality and strength I am currently enjoying is going to, once again, be taken away from me. 

It's extraordinarily bittersweet, and as this marathon drags on into its seventh/eighth/ninth months, I am finding myself cracking a little bit beneath its ongoingness.  Like, really?  Give me a fucking break here.  I just want to take my ability to walk down the hill and up the hill for granted again. I want to keep the feeling of my legs having muscles, and my heart having the strength to pump.  I want to get stronger and stronger and stronger, and not have ceaseless pain in one part of me or another.  I want to be able to move my arms without them hurting. I want my hair back.  I want to have a morning where I don't have to decide how much like a cancer victim I want to look today.

Sisyphus.  Up and down.  I do think the moments of health are the most chaotic for me.  When you're slogging up that hill, pushing that rock, well, there's not a lot else on your mind.  It sucks, you know it sucks, and you just can't wait for it not to suck.  It's very binary. 

But the way down hill is infinitely more complex.  It's mixed with relief and knowledge of the future and the sense of futility and gratitude, all at once. Do you curse your life because of what you've just been through and what you're about to go through again, or do you revel in the fact that the present moment is so very sweet?  It's both and neither.  And the emotions whipsaw between the two poles with chaotic randomness.  One minute glorying in the aching beauty of the now, and the next minute cursing the gods. Weepy from the profound exhaustion of the whole ordeal.

And yet... and yet... I am still so grateful for the opportunity to feel it, and learn from it, and dig in oh so deep. Without fear or ambition, I am grateful for this moment. I don't know if something good will come from my undergoing these trials, or whether I will (hopefully) be graced by avoiding something bad. But I'm in this myth for a reason, and the only way I can understand it is by embracing it fully.

The Land of Normalcy

The insidious part of feeling better is that everyone, especially myself, wants everything to go back to being Normal.  And Normal is a country in which I no longer fully belong.

Normal people make plans and can assume they will usually be able to follow through with them. These plans can include recreational things, like having dinner with friends, or going to a concert. These plans can include extended learning experiences, like enrolling in fun classes or gardening. These plans can include going to the Apple store to get a new phone because, oh, just for example, you were carrying too much fucking shit in your hands yesterday and dropped the fucking phone on fucking Fair Oaks Boulevard and cracked the hell out of the screen.

Normal people could deal with that.

Normal people have civilized, light, friendly conversations at dinner.  Their nerve endings are not exposed, waiting for the first opportunity to get aggravated. Their heart isn't just barely healed, the thinnest of membranes holding it together, just waiting to be broken again into a multitude of pieces.

On the other hand, Normal people aren't being bludgeoned over the head with the knowledge of their own mortality. In the land of Normalcy, life is full of an infinite number of petty grievances, unspoken frustrations, and simmering resentments. Normal people are generally pretty miserable, in a low grade way, because having no big picture perspective allows for the smaller picture stuff to grow magnificently in proportion.

Being Normal is like sitting bare-assed on a black ant hill, covered with creepy little bugs which won't exactly kill you but will make you wish you were dead.  Being outside of Normal is like looking down the barrel of a gun, so sure it will go off that you would do anything to stay alive.

I am a citizen of neither country and a visitor to both today.  I am OK enough to be bugged to shit by just about every human being I encounter (including, but not limited to, everyone who shops at an Apple store and everyone who works at an Apple store). I am OK enough to be ground down by the constant and still-prevalent soreness in my body.  But I am not OK enough to forget how really facing a good life-or-death crisis can make all the other shit disappear.  I am not OK enough to take the petty stuff lightly.

It is a dicey day here in the borderlands. A day without crisis enough to feel that delicious detachment from the mundane. A day without health enough to go out and bike, or swim, or engage in the world in a happy lighthearted way. I walk, I stand in line in the Apple store (and don't even get me started on the genius bar or their organizational structure that is so overly designed that you can't really find someone to help you, you have to kind of stumble upon them, in a, you know, intuitive way, because hierarchical systems are sooooo old school, so linear, so non creative), I manage my paperwork, I do my Sunday things.

But I'm not in the land of Normalcy yet. Nor am I feeling the glories of the anarchistic frontier.

Construction and Reconstruction

Is it just me, or do these look like little connected tumors?

They are tearing up our bathroom floor. Again.

While I recline, letting my latest incisions mend together, our contractor is hunched over our newly-tiled floor, chiseling off the tiles like scraping bubble gum off the undersides of church pews.

This whole thing started when I was recuperating from the mastectomy. I do not recuperate gracefully. I am either flat out, or I am getting better.  And getting better is usually indicated by my starting to clean. Depending on the illness, the cleaning can be as simple as sweeping the floors or as ambitious as rearranging a closet. However, I am in the big time now and I started seeing huge things that needed changing, and fixing, and improving. The most annoying (and allegedly the most easy) of which was the kitchen faucet. The faucet had been broken and leaking for years, and we periodically had to bail our cleaning products underneath the sink out from their swamp of overflow water.

We had used a contractor named Dave to do some repairs to my mom's condo, and we liked our working relationship with him. I think it was sometime about a week after my first surgery that I woke up one day with a "this aggression will not stand, man" attitude, and said we needed to call him and fix the sink once and for all.

So Dave comes out with his plumber guy, Memo, and they look around.  We start a bunch of blue sky talk about the ultimate remodel -- the bathroom, the kitchen, the exterior. But first, we just need to fix the sink. Which they do, and it's all reasonable... except that it comes with the inevitable good news/bad news: the sink is now fixed but our pipes (original to our 1951 vintage house) are crummy and corroded and need re-doing as well.

So we make a plan: do a copper repiping while we're on our soon-to-be-aborted trip to Seattle, and start on a little bit of the bathroom remodel. Remember this part from that whole story?  We come back and the house is in upheaval and we are down to the studs and it's all a mess.

Fast forward. The work on the bathroom continues, but more things come up. Our drains (not to be confused with the piping) are clogged and corroded and not to code. One of them does a neat little jog from the washing machine inside the garage, through a pipe outside the house (that people like to sit on during parties, no bueno), back under the kitchen sink (where the laundry water rises like a murky apparition every time we do laundry, which is bad if we're doing something like defrosting food or, you know, just standing there with guests we are trying to impress). So... drains.  We do those too.  Just a few thou more and, hey, in for a dime etc.

Fast forward some more. We pick out some cool flooring tile -- hexagonal white tile with a cute black pattern woven into it.  That informs the tiling -- how about white subway tile with a black pencil line. Cool.  I had originally thought we'd keep our tiling, but no, we nuke it. While we're at it, do we want to keep our tub?  First I think no, then I think yes. We could reglaze, or we could get a new tub.  Fun.  New tub.  Let's do that.  The first tub Dave picks out is cast iron and the right size, but too shallow.  Can't do that.  Need more water, not less. Then Dave picks out a good cast iron tub, deep. But, it's super expensive. And not that narrow. But that's OK and I'm about to pull the trigger when Dave says, hey, for the price of the cast iron tub, we can put in an acrylic whirlpool  Deep, narrow, with jets. Say... that sounds good. So we do that.

All is good, but it's wearing on the nerves. Our toiletries are in the office. Our dirty laundry is in the office. Everything is in the office, except for the dog. The dog does not stay in the office, nor in the house. In fact, the dog keeps getting out altogether. He gets out during the drain project. He gets out during the tiling project. He gets out through the gate that people forget to check.  He gets out when no one is looking. 

Sam planning his next escape

This is bad. Our dog... well, everyone knows Sam.  Like the rug (again, with the Lebowski reference), he ties the whole family together. So, Sam can't get out.  But he gets out.

The final straw comes last weekend. I am exhausted, stressed, and my mom generously gives us a night at the Langham hotel as a belated birthday present so I can R&R before my reconstructive surgery on Tuesday. I go over there first and have a lovely time by the pool while Roger checks in on the house to make sure everything is buttoned up before the workmen go home for the weekend. These are new workmen, just finishing up the floor, as Dave has to be out of town on family business. Dave swears they are good tile guys, fast, and will get the job done. We absolutely have to have a working bathroom by my surgery.

I sit poolside, happy as can be. I come back to the room and call a girlfriend and while we are yakking and laughing about home improvement projects, Roger comes in. "You don't know the half of it," he mutters. And, after I hang up, he proceeds to tell me what just transpired.

The workmen have put the floor tile on wrong. Like, completely wrong. The tile looks like it'd be a  really pretty simple a pattern to follow.  But you kind of have to pay attention. And if you don't... it is really easy to screw it up.  And when you screw it up, it looks really really bad. He shows me a picture of what it looked like and yes, it is, it's really bad.  The lines of tile go straight... until they don't.  There is nice spacing between the rows, until there isn't. He was trying to tell them what the problem was (with them not understanding what he was saying and indicating that it was all fine) when his phone rings.  It's the neighbor, up the street.  Is our dog named Sam?

This is when the shit hits the fan. The workmen have let the dog out through the front door this time, the floor is a disaster, they are pushing back, tempers flare. Roger kicks them out of the house, calls Memo, who comes over, and confirms that yes, indeed, it's all wrong.  And then Roger proceeds to come over to the Langham where we have a complete reality shift, relaxing and luxuriating, until we have to go back to real life altogether too soon.

Construction and reconstruction. Upheaval and calm. While on our one day vacation, I was able to get a bike ride in... a good ride, an exhilarating ride.  And I got some yoga in. And some Tai Chi.  And a lot of swimming.  And it was great. I felt bursting with health, the chemo finally letting go of its death grip on me, and I feel great.

48 hours later, I'm cut open, muscles slashed, new body parts added, and other body parts rearranged. Fat is extracted from my belly and deposited under my arm where they took the lymph nodes out. My body is filled with anesthesia. I start a regimen of pain killers which mess up brain, bowels, and basic equilibrium.

One day I'm fine, pedaling down Lake Avenue with the wind in my (well, admittedly still very short) hair.  The next day I'm a patient again, in the gown, the needle trying to find the vein, being rearranged from the inside out.

The floor is being torn up. Again. My body is being torn up. Again. We are getting rid of clogged drains, and tumors, and installing clean new infrastructures that will provide healthy sustenance for years to come. This is an expensive and time consuming process. Changing things from the inside out. Plumbing (and replumbing) the depths.

And it's not over. Not by a long shot.  But when it's done, my internal and external worlds will have been completely overhauled. Quality of life will be better. We will be set up for the next several decades, if all goes well.  Sometimes change comes in subtle shifts, sometimes all at once.  Apparently this is the year for everything to shift radically.