Phoenix Living

One of the questions I was asked after putting up the recent “questions” post was:  “Since breasts are essentially secondary sex organs, do you find that your sexuality has changed since the surgery?”

I had an immediate response to this one, and another response after giving it some thought, I’ll share both here.

The immediate response was no, I don’t think my sexuality changed much due to the surgery and loss of breast.  I think current stress in the family causing at least my husband to have a temporary libido decrease has affected my daily sexuality more than the surgery has.  (Though we’re certainly doing what we can as energy levels permit, enjoyably!) I’ve certainly found that the cliché of an increased libido from the “new lease on life” effect of narrowly missing death has been reasonably true in my case; I’m interested in sex most days, though sometimes the physical energy doesn’t cooperate with the desire.  I also find it easy to take care of those needs myself when a partner isn’t available, but that’s not much different from pre-cancer attitudes.

One thing that I think has drastically helped my new body-shape perception internally has been the across-the-board acceptance of how I look from family and friends.  I’m told I look great, the scar is “neat” or “pretty”, and all of this matches how I feel.  Certainly early on after surgery there were some body image issues coming up periodically for me, but they were much easier not to internalize as truth due to the awesome support I received.

Another thing that sounds opposite to the above but has still contributed to a very comfortable body image is my assumption that for MOST random strangers I will meet or encounter, I will be Other and not a sexually attractive being.  Not only do we monkeys have a biological tendency to prefer symmetry of form, but our culture in America has an unhealthy obsession with mammary tissue.  So I do tend to assume that most people will not be checking me out in a crowd.  This perversely has freed me up to think about it even less than I did before — which wasn’t much — and dress how I please, look how I please, and walk as if I’m a gorgeous goddess even more easily than pre-cancer.  I also tend to assume that anyone worth paying attention to will be able to see the attractiveness in front of them and not get fixated on blemish-free symmetry.

After some thought, I think a couple of things have changed.  In general, I don’t really perceive breasts as sexual organs, though I’ll still notice with aesthetic appreciation someone with a particularly well-sculpted set.  On the other hand, my husband is helping me explore sexualizing the ur-boob, touching it during shared intimacy as well as more casually in cuddling.  I find this has done much good in assisting my subconscious to accept my new form.

These days I have a much more ambiguous relationship with the remaining breast than the mostly-missing one.  How do you continue to love and accept a body part that you’re planning to remove before it tries to kill you?  You can’t reject it outright while it’s still a part of you, or you’ll get alignment weirdnesses and messed up patterns of muscle tension and possible other health issues.  However, you also can’t fully trust it, especially with the genetic component of cancer mutation present.  Conditional acceptance of a body part is a strange thing to attempt healthily, for someone used to more comfort with my own body than that.  It varies from day to day how well I do on that front.

I feel healthier than I have in years, which I’m told is fairly normal after a life-threatening health crisis — not the least of which is now I have more visceral motivation than most to get and stay healthier.  That has certainly contributed to more emotional equilibrium as well as easier bounce-back from heightened emotional states.  It also makes it practically much easier to make myself exercise and stay active even when I’m-tired-and-don’-wanna.

I have to assume all of these factors are contributing to my current healthy and vibrant libido as well as my available physical energy for daily activities which is still improving weekly.  I’m well aware my experiences in this area are nothing like most people with breast cancer.  It’s obvious from the available e-literature on the subject that most people are expected to be sexless and hate themselves post-mastectomy, or only feel better if they get reconstructive surgery.  I don’t expect everyone to follow my lead, but I am here to tell you that those expectations aren’t inevitable.

More questions or thoughts? That was fun to think about!

Still writing these and thinking on these posts, but so much happens daily that knowing which part to talk about can be overwhelming at times.  Thoughts on body awareness, othering through life crisis, prioritizing spent time, cancer anger, social outrage, balance of awkward and sublime, patience, energy management, learning to genuinely care for the physical self, chronicling what happened/is happening, future treatment choices, childbirth, human neuter, infinite shades of pain, friends’ processing in life crisis times, healthy pushing of self-boundaries, mind over matter vs body-says-fuck-you, family stuff…it all gets a bit jumbled together at times.

Anything in particular you’ve been wanting to know or learn more about, in this situation?

(continued from this entry)

It’s totally cheating to wait this long to write about it.  I’m sure it won’t have the visceral impact of the original experience; there’s a large enough veil of time between to make it easier for me to look at, sideways at least.  All the cliched statements I can think up to describe it involve mythological or religious metaphors and fall short of the actual experience.

I found it an abomination.  As mentioned in the previous chronological entry linked above, I think it is appalling in the 21st century that we have any situation, much less one we voluntarily enter into, where humans are subject to that level of pain-that-could-be-ameliorated, especially “for our own good”.  Dehumanizing levels of pain: anyone who wants a clue how someone can be hurt enough to be broken need only to experience enough modern medical surgery to get a very clear taste upon awakening.  In my opinion even the excuse I was given — “we need to know you’ll wake up from the anesthesia before we can medicate the pain” — denotes our attitudes about the pain-state, as I’m sure if anyone cared enough to, the research could be done to find a way around that.

Here is how it went:

The world is not, and then the world is pain.

Unmeasurable pain even on the scale of someone just finished having an extremely painful cancerous tumor rapidly sucking my life away.  Pain at a level to make even someone with my massive levels of self-control flail and struggle against those restraining me, with a whimpering animal need to escape from the fire that burns every nerve so strongly I can’t tell where it originates from — the primal scream of a body violated enough to be missing some of the original parts it was born with.  They keep telling me “you need to breathe, honey” and my 250,000+-word vocabulary is reduced to three, said over and over between the gasps of the most powerful asthma attack since I was a small child: “Can’t breathe. Hurts.” My problem seems pretty obvious to my broken thought process, but they don’t seem to get it.  They put an oxygen mask on me but then have to take it back off as I communicate that I need to vomit, I don’t quite remember how (this is one of the few hazier memories, most of the rest are still all too clear).

They apparently injected morphine into my IV when I awoke, but it’s not working and I still can’t breathe and they have to go away to find a doctor to approve another dose of painkiller even though I’m still writhing and oh, not really breathing much.  They leave one person to manage two beds(!) while they wander off to find out if they can give me more and my world is reduced to struggling to breathe but this at least I have many illnesses’ practice with, and so I breathe and hurt.  Even in the midst of it my writer brain is awake and active, noting just how far into the realm of pain I’ve gone beyond what I previously knew, knowing that if I were Pulitzer-prize-winning material I couldn’t describe what this is like in any way meaningful to someone who hasn’t felt it.  And knowing I’d try anyway.

They finally come back and give me another dose, five years or minutes later, and soon after the world snaps back into focus, with a brief diversion into the only hallucinations I will experience on morphine. (I see the air vent moving, and can’t tell whether I’m imagining it or not, so I ask the nurse, who confirms it is not moving; a minute later I see the fluorescent ballast over me start to melt into tendrils reaching down toward the bed; I don’t ask about this since I’m pretty sure it’s not real, but interestedly watch to see how long it will last.  The tendrils extend until they’re about 1 meter above the bed, then creep back up and it returns to appearing a normal light.)

A minute after that and I turn to the doctor and say my first complete sentence since awakening: “Did you have to take any of the pectoralis muscle?”

The weird looks from the doctors start up around this point.  I continue to ask questions about the procedure while they finish up with the Recovery Room protocol, some of which they even answer, and then wheel me to the hospital room where I will spend the night, and where several of my relieved and numerous family are waiting to welcome me back into the world.

(to be continued)

Perhaps it’s just my recent experiences being so far off the normal pain scale, but I wasn’t in nearly as much agony during the mammogram as I’d been led to believe from hearing tales from others who have had them.

Share your mammogram experiences here!

Had a conversation with a friend yesterday that was interesting (as all of my friends are).  She mentioned that she thought she had been in a lot of denial in the few weeks leading up to my surgery when I was, essentially, dying.   That she just refused to think about how sick I actually was and what that meant.

I agreed with her, remarking that even though I knew what was going on, I wasn’t articulating it, to others or myself.  Facing likely death, having chosen life over and over since my birth, I relied upon the strength of the genetic impulse, the need of “life” to persist.  I did not deny what was happening to me; I calmly went about the “last rites” of preparing my will and medical power of attorney documents, contacting family and friends and spending time together where possible, paring down to what absolutely mattered for survival.

That last week, what mattered most was the other people, the wonderful loved ones that kept coming over, vigil-like, to share their time and witness my living, witness my life burning up every resource in my body to remain here.  That last week, I’d run out of energy.  The will to persist was there but the flesh was finally faltering.  When that strength left, there was always someone else’s to take up the slack, someone else’s presence to remind me of why it was so important to continue breathing, to deny Death’s right to take me.

It was only after surgery, when my body was free to finally start healing and bringing life fully back into me, that I was able to directly face the cold fact that I had almost died, that I now had an insider’s perspective on what dying felt like.  Death walks at our shoulders from the moment we draw breath, and part of the vibrancy of life comes from how easy it is to forget that fact, to live as if we’ll live forever.  I read a lot of denigration of that illusion/delusion, and I can certainly see where it gets our species in trouble to follow it.  But I can tell you that it’s part of why we are still here.  Because we are sometimes able to face death’s certainty and not just laugh in its face, but deny its power over us when it matters.

Of course, the other side of the spent coin for those of us who have refused Death’s surcease directly is that we never again get to share the illusion of Death’s absence with our fellow humans.  But that’s complicated enough that it should probably have its own post, another day.  Fearless Reader thoughts or shared experiences?  Please comment here!

I am recovering from all the recent travel though still more tired than I’d like.  We got the packet for The Kid’s school in the mail today, I’m excited and looking forward to all the supplies shopping!  It looks like a good balance of school and off time throughout the year.

I’ve finished two flash fiction pieces in the last two weeks, and this week I am working on another Byer Family story.  Today I wrote 4 1/2 pages on it and once again find Squirrel Byer to be one of the easiest narrative voices I’ve yet had the pleasure to write.  Plus this one is a nearly all-children cast of characters, which should excite my few but loyal fans who know my work.

So yeah, writing is slowly coming back online regularly rather than sporadically after the madness of the last couple of months of health recovery and travel and court stuff.  It’d be cool if I could get back on a daily writing schedule even before school starts.  If not, I suspect I’ll have much more time most days then.  Full-time child-care is demanding and exhausting!  But he’s a great kid, bright and inquisitive and thirsty to learn all about the world and the interesting things and people in it.  He also has interesting enough ideas that I can tell he’ll be good for my work overall, even if there’s been a few hiccups in my wordflow as we adjust to the new household member.

Interesting dialogue on several writer blogs lately about the difficulty of giving mid-career writing advice.  While I haven’t quite reached mid-career, I’ve certainly moved far beyond what a “new writer’s” group or website can provide me. The consensus so far seems to be that while new writers have to all tackle the same lessons — though the order can vary — mid-career writers have specialized along their path enough that any useful advice has to be tailored to each individual situation.

One of the biggest writing hurdles I’ve been tackling lately isn’t something I’ve seen talked about much on new writer sites, but I do think is a bit more widely-spread than just my experiences:  that is, a “block” on writing that isn’t a lack or stifling of ideas or words, but simply a lack of available energy.

Most health-normative people don’t push themselves enough to their limits that they have to learn how to carefully ration daily energy, especially in American culture.  Most, in fact, don’t use all the available energy they have in potential each day.  Over time, poor health, dietary, and exercise practices will cause that available energy to drop much closer to the low daily expended amount, but that’s a training of your body just as exercise and wellness training is.

Quite a lot of the artists I’ve met regularly push themselves to (or over) their known limits, either physically, mentally, or a combination of those and more.  Whether they have chronic health issues or are engaged in more voluntary boundary-testing, I know very few artists who have managed both an internally self-challenging and whole-health-positive worldview.

I’m trying.

I was even before cancer, but much more so after. I am blessed in that my ideas never lack; I am a fount of ever-burbling ideas, many of them good ones.  I have hardly ever encountered a “writer’s block” as I traditionally understand the term, where I couldn’t find where my words had gone or was worried about where my next good idea was coming from.

But oh my, do I know chapter, verse, and line notes about how a lack of available physical energy affects one’s ability to generate creative work.

In fact, I’ve thought so much and so long on various aspects of it that I’m not quite sure where to start writing about that topic.  So I thought I’d try asking you Fearless Readers: what interests you about this topic?  Is there something you’d like to know more specifically about my encounters with creative energy drain?  Perhap a question or three will get my thoughts moving more linearly on the subject — or at least more coherently.

Now back to the word mines (in this case literally a coal mine)!

If you missed this comment, take a moment to go read it now.  It gives me happy shivers every time I read it or tell someone about it.  This is part of why I’m writing about the cancer experience, and one of the reasons I’ll keep writing about it.

It is awesome and humbling to think I might have helped already save a life by scribing words.  And motivating!

PS - Ladies, do your breast exams monthly, no, really!  Train your lovers or spouses to do it for you if you just can’t make yourself remember.  Make it a ritual.  Make it a routine.  Whatever makes you DO IT.  However weird, scary, uncomfortable, or forgetful you feel, trust me — actual cancer is WAY WORSE.

We had a couple of unexpected outage days due to a blip in the server migration, that has been fixed by my Fabulous Husband.  (for those not on Facebook, Fabulous Husband has also shown his awesomeness once again by buying me for my birthday tickets to a Lady GaGa show in July; he’s also excited about attending with me, even better!)

Everything should be back up and functional on the blog and website, leave a comment if you notice any weirdness that looks like it shouldn’t be there!  Actual blog content returning soon, I finally hit my “crash day” so today has been full of nap, therapy appointment, and more nap.  I’m looking forward to sleeping soon to recover from all the napping, hehe.

Slowly creeping upward again in number of stories out circulating, woohoo!  I’m awaiting edits in the mail on one of the new ones before I send it out and about, and just got back edits on an oldie but goodie that has needed fixing for a while, so looking forward to that.  Other than a couple of other smaller projects, it’s all about more work on the novel in the next few weeks.

With my writerly powers, we will now leap forward in story-time for this post, and talk about an interesting recent household solution.

Post-cancer, the coins of the realm are energy and time spent.  How much time and energy a particular activity takes, and where it intersects with how much you care about said activity, is what determines what you decide to do.  You never, ever again get to have as a remote abstraction the awareness that death awaits around a nearby corner.  Every activity choice carries with it the underlying question, “If the cancer returned tomorrow, how much would I care about having done this activity?”  It forever changes your barometer of “what matters”.

So as my husband takes on a new, out-of-the-home job, we know we have to prioritize adding back in the he-and-I time, once we know a bit more about our new daily activity flow.  Because that’s exactly the sort of thing in a normal life that you wake up months later and realize you’ve totally slacked on, and whether you scramble to fix it depends on how invested each partner is in the status quo, etc.  But married to a cancer survivor, you don’t know if those months slipping away like hourglass sands are .005%, 5%, or 50% of the time you have left with your life-mate.  So we have to take extra steps to make sure the lazy easy habits don’t set in, in the first place: our time together is too fucking precious for that, forever.

Every choice of new activity brings with it similar questions, like returning to school: is putting up with the stress and bullshit of academia worth that much of my time to get the end product?  Or do I re-prioritize those plans to something that I know for sure will bring fulfillment and enjoyment without the accompanying stress?  What are the hobbies or recreational activities that I’d always planned to “get around to someday”, and why are they not just being done?  When the heck is “someday”?  Not to mention the emotional shifts: how invested am I in being angry/upset/resentful or whatever about an interaction, when that takes both time and energy away from the option of doing other things and feeling content or happy?

The most interesting recent manifestation of this process, happened this week as we hired a part-time house assistant.  We’ve also recently hired a part-time personal assistant/financial manager for the DreamCafé, as we’d all rather be working extra hours than balancing the books. Money management stress?  So not worth that time/energy coin.  Less stress will also probably lead to more functionality on the finance front for everyone, bonus!  But back to the house assistant.

In our 21st century enlightened household, though none of us preferred to do so we have nevertheless been operating under a functional gendered double standard for house upkeep and maintenance.  This is not because my housemates are sexist; they are in fact some of the least sexist men I’ve ever met.  However, whether due to geek nature or subtle male privilege, they are much less invested in the upkeep of, and able to more easily block out disruptions in, their immediate environment.  I, whether due to my hyper-awareness of my local environment or my own gendered societal programming on who’s responsible for mess, get driven quite batty if the house reaches a moderate level of mess and clutter and if it gets past that, the chaos will start actively affecting my own ability to get useful work done.  However, being a 21st century feminist sort, my efforts at superwoman status don’t eagerly encompass the traditional women’s duties.  I’d much rather be busting my ass at 18-hour workdays along with the menfolk, and doing any cooking or other chores because it’s my turn or I feel like it, rather than the shit rolling downhill and sticking to me because I notice it fastest or because the other monkeys in the group think it’s my job.

Pre-cancer, we tried various combinations of chore sharing and internal grumpy grumbles on my part for continuing to end up with more of the housework because I cared more about whether or not and how it was done.  (Note: my menfolk are very willing to help out when asked, and over time have voluntarily taken on several chores as regular habits without being asked.  I’m not at all trying to paint them with a “typical male” brush, just attempting to describe actual events and make best guesses as to the whys.)  Post-cancer, I don’t have the time or inclination for either the chores or the grumbles (see life-too-precious comment above).  I’m finding that at my current recovery phase, I have energy for either work or house maintenance but not both. The other two aren’t interested in taking on or keeping the extra chore duties either.  Yet still, the chores need doing.

Enter: a good friend needing a part-time job to fund her own creative pursuits while paying her bills.  Ah ha, my clever brain thinks!  Discussions ensue over several weeks, giving everyone time to find any hiccups in the friends-working-for-friends scenario (not usually the best idea), discussions of job and payment expectations, and extreme openness on my part as to the ultimate purpose: we’re paying for the privilege of removing the household functional double standard — which none of us actually wanted — so that all of us can do more of what we want to do on a daily basis, which is share time together and work our little butts off.  When work equals writing and high level computer geekery, every work day is also play day: one of those secrets to success you can probably find in a self-help book somewhere.

A friend mentioned that having the class privilege to pay for the financial and house assistants might be controversial for some folks, and I suppose I can see that.  Post-cancer, though, I can’t make myself care that much.  We have the opportunity to take a huge load of stress and drudgery off all our plates, to free up more time for us to enjoy just being around each other, which is what we like best to do anyway, and to add to someone else’s self-support.  All I have to be responsible for is overseeing that it all goes the way I prefer the house to function, and I like that kind of overseeing and organizing.  It would seem really dumb not to take that opportunity simply because there are folks in the world who don’t get that choice.  We worked our asses off to get to the place where we can afford to make that choice, and life really is too precious to squander the chance to have quality slack along with our persistent daily work.

Thank you, Nathan and Steve, for freeing me from the chains of the three-shift-woman social standard.  Work and child-rearing are enough shifts for anyone.  In the couple of days since we started this endeavor, I’m already getting much more writing done — I wrote a 3150-story draft from start to finish in 25 hours (with breaks) this week.  And it feels like there’ll be enough time for play and shared time with some of my favorite people daily, along with all the work parts. Post-cancer, that suits me just fine.

Comments and discussion welcome as long as everyone remembers their manners.

I was off camping this weekend, and survived it with only some exhaustion.  The exercise was good for me overall I think, though next time I need to stay a little more consistently cool.  Never actually overheated thanks to a couple of helpful camps out there.

This week is crazy busy with prep for The Kid, several official emails, writing  two short stories, more novel work, finishing a long-overdue paper, and I’ve already sent out another story for publication consideration as well as awaiting return of edits on another story to get that one circulating as well.  Not to mention getting to more regular blog posting again.  It’s a busy life, much better than the alternative.

But first, along the self-care front, lunch before my head-maintenance appointment.  Then most likely either cleaning or a nap, followed by the other.   Yay, life!