?TMI? Again, You Can't Say You Weren't Warned...

THIS is a crazy side-rant in the middle of what, I am quickly becoming convinced, is a minor nervous breakdown. But it is a really positive crazy side-rant, and I *really* need the positive right now, so don't say you weren't warned about the upcoming crazy-laced TMI rant.

Women under the age of menopause (and any many in or hoping to be in a long-term relation with a woman) might secretly fear "the Change" more than any other biophysical event outside of dying. Let me demonstrate my point. Set a timer for 45 seconds, then close your eyes and think about the ways menopause has or is impacting your life. What might the future hold for you when you finally stare the Change in the eyes for the first time.

How could it not send icy cold shivers down the spine?  Considering Hollywood's portrayal of older women, (women of any age, really) pharmaceutical advertising's constant reminders about the heat, moods, and moisture (or lack thereof) associated with the Change, and the ever-present stoic, matronly mother/aunt/grandmother/friend's mother/church pew neighbor/sweet little lady next door archetype, what else are we supposed to think?  I've always imagined a grim Transformation (I'll stop speaking for the majority of women now) resulting in a shell of a woman, a ghostly shadow of her former self. Every joke, ad, and movie reinforces the idea that menopause is PMS-on-steroids.

I see things a bit differently now.

I would like to point out a few things 1) in no conceivable way did my 3-month, chemically-induced, stress-drenched menopause experience resemble what I understand to be the "average," "natural" menopause reality, information admittedly gleaned mainly through furtive, short conversations and late night Google obsessions.  2) In no universe do I think it's possible that my "Change" is complete.  3) In no realm of the imagination would I EVER be so vain ~ or disrespectful ~ as to superimpose my experience onto others.  What I write next is my experience, thus far, and I must assume that it is mine, alone.

But I dearly, truly hope not.  :-)

I look back now at the barely-contained angst that consumed me during the months after my diagnosis, but before...  well, today, and my first instinct is to stoically smile, just like I've seen a million other white-haired matron smile.  For months that seemed like *centuries,* I could not, in my relative innocence, imagine me without my "Drive."  And that's the big deal about menopause, right? You lose your "Drive," and then you go crazy. "Drive" has played a heavy hand in my Universe for almost 40 years.  The thought of it simply disappearing (because that's what happens, right?) was so inconceivable, so... unspeakable that I spent many nights/early mornings alone on the couch, trying desperately to not-disturb my 16 year old son or my boyfriend ~ of *7 very short months* ~ as I immersed myself in imagining who that woman would be.  There is *nothing* to prescribe, no exercise to overdo, no proven remedy for the loss of...  desire. How... boring that must be, I thought. So empty. Dead. And anyone who knows me intimately understands that boredom is my kryptonite. I was scared to death. How in the HELL was my already-stressed-to-the-max-7-month-old relationship going to handle THAT?!?!?!?  It was already juggling work, children, grandchildren, family, bills, daily life, blah, blah, blah.  Oh, yeah.  And breast cancer.  Put menopause in the mix?  You could say I was scared. To death.

Fast-forward several months later to now...  I am emerging into the next phase of this.  I am coming to understand that Drive and Desire are two often-very separate things. The absence of "Drive" is not a vacuum.  To be left empty, the core quality of the human spirit would have to be "Drive." Somehow, in my pre-menopausal way of assuming the worst (something I have NEVER done before), I had decided that "desire" equated the "Drive," that they were one and the same. It is a Need, a Necessity, ultimately, a biological imperative. It is Sex Drive that has allowed the human race to procreate and survive. Drive is produced largely by estrogen and in the hormone's absence, Drive all but disappears. This would be a terrible tragedy if Drive and Desire were the same thing. I am coming to see they definitely are not.

Desire involves interest. It involves enticement. Desire equates *want,* instead of need. Yes. The stripping of estrogen from my body would leave me bereft of Need. But Desire, I can now see, has nothing to do with estrogen. In fact, it's had an almost inverse affect on me. The death of Drive has left all kinds of room to filled in with Desire. (That is about the cheesiest-ass thing I have *ever* written.) Being able to let go of "have to" and embrace "want to" has been amazing. Enlightening, really. I look back at my menopausophobia, and I can't help but laugh at my irrational fears. Interestingly, I think I'm glad I was given a healthy fear the Change. In some ways, the looming threat of <<<menopause>>> kept me on my toes. It never let me forget for too long that nothing is permanent. The zombie-esque future I face as an aging woman often inspired(s) me to acts of great fun and foolishness. Desire, unfettered by "Drive," is trans-formative. When sex sheds the weight of "must have," "want to have" all but takes over.

Remember that 45 seconds of imagining menopause? Close your eyes, again, but this time imagine what wanting feels like without the pressure of "must." Wanting the one you love, not because a gland in your brain is flipping internal switches your body can't ignore, but simply because... you want them. You don't have to have them. <close your eyes!>

You *WANT* them.

;~*

And that, my friends, is *hot.*

So when half-joking, side-stepping inquiries about the HELL of menopause come my way, I think a calm, reserved smile is probably the way to go, don't you?  

Look Right Through Me

Menopause - /ˈmenəˌpôz/ - noun

the ceasing of menstruation; the period in a woman's life (typically between 45 and 50 years of age) when this occurs.

Okay.  Well, that definition is pathetically simplistic.  Let's try a medical dictionary.

Definition: Menopause represents the end of menstruation.  While technically it refers to the final period, it is not an abrupt event, but a gradual process.  Menopause is not a disease that needs to be cured; it is a natural life-stage transition during which women often make decisions about "treatment" options, such as hormone replacement therapies.

Now we're getting somewhere.  That one reads more like the opening of a conversation.  Unfortunately, it's a conversation, it seems, no one is having, not with any kind of full-disclosure honesty or in-depth exploration.  Or maybe it's too complex and unique for a true conversation; I just don't know.

What I do know is that 3 months ago, one of my favorite nurses at CCNW looked at me and said, "Well, you are fully post-menopausal, so we don't need to do anything there."  Uuuuhhhhhh, WHAT?  Before chemo started, I wasn't even PRE-menopausal, and now, less than 4 months later, I'm fully POST!  What the F@CK!?!  Couldn't SOMEONE have thought to mention to me that my hormone levels were changing so drastically that I would be through menopause in record time?  Maybe there's a meditation practice I could have done to ease the symptoms.  Maybe some gentle yoga.  A pill with no harmful interactions?  SOMETHING?  I thought I was *losing* my mind.  I really, seriously thought I was going crazy and that I wasn't going to come back from it.  At least if I had known it was menopause, I could have focused on the....  temporary nature of the mood-swings and physical changes.  I figured my care team would KNOW to say something about it, but no one thought to say anything.  No one thought to mention it.  I felt so invisible that day.  So trivial.  Glossed over and unseen.

And now I'm going through it again.  Not menopause (I don't think), but the great, invisible Phantom Nipple strikes, this time.  The weight of misunderstood assumption is *so heavy.*  I completely understand why anyone in their right mind would look at breast reconstruction following malignant breast cancer as a positive, celebratory thing.  Maybe I'm not in my right mind (ha. ha. ha.) but it doesn't feel that way.  I just hurt.  Badly.  Not as bad as I did after the mastectomy, but almost.  And definitely more widespread.  This pain is temporary, though, I know that.  Who, (there's that phrase again) in their *right mind* WOULDN'T celebrate their return to looking "normal?"  Apparently, not me.  I am on my way to the full breast augmentation I have wanted for *years,* and I am not happy about it.  And I don't know why.  I'm sure I will be, eventually, but right now, in this moment, no.

There's a sense I get that many might think I am now on the road to "over;" that I am officially  on the road to "recovery" with this first surgery.  Maybe that's what's pissing me off, because I don't feel the "over" - the "recovery" - that so many seem to see.  I still have Herceptin infusions through September.  I still have many minor and at least one more major surgery between now and February of next year.  I have Tamoxifen pills (the ones that will KEEP me post-menopausal) for a minimum of 5 years, or 10 years, if the current studies say 10 years is better.  Maybe I'm pissed off because I can't seem to see this step like others do - for me, this is one of twelve thousand steps I simply never wanted to *have* to take, one of many pills I never wanted prescribed, one of many chemicals I never wanted injected, one of many surgeries I never wanted to have.  I can't seem to find the "at least" in this, yet.

And underneath it all, every time a migraine sets in, or my damaged heart starts pounding too quickly and too hard, or my vulnerable lungs show the slightest sign of ache, I will have to fight the urge to beg for more tests - just to *make sure* IT hasn't come back somewhere else.  Just to make sure I don't have to start this *hell* all over again.  I now know, intimately, how much this experience sucks.  And I can never *not know* that again.

Ignorance is bliss.  And in this, I am not blissful.

(In honor of my dearly departed cousin, Ashley Carol, age 52, who passed away on Good Friday.  Your pain is relieved, your fears are allayed, and your suffering is at an end.  God speed and take care of you, "Sis."  You've earned it.)

Let's Face It...

I'm lazy.  Every time I get in this thing, it is glaringly obvious that the time between blogs keeps getting longer and longer.  And it's always some version of the same ol' bullshit.  "It's been awhile.  I feel bad about that.  I should look at that.  Some other time ~ I have more important things to write."

But, do I?  I have ideas.  Goals.  Wants.  Needs.  Desires.  Lazy doesn't do any of those things any good; it doesn't bring them any closer.  There are times to be lazy and there are times *not* to be lazy.  Lazy is easier.  It is quieter.  It is less exhausting.  Lazy is all kinds of things, but one of those things is *not* healthy.  I cut off my left breast so I could be healthy again.  I went to chemo every Friday for 12 weeks so I could be healthy again.  I "willingly" instigated full-blown menopause at the tender age of 45 while in a *brand new* relationship so I could be healthy again.  I am offended.  I am insulted.  I am disappointed by my laziness.  I deserve more respect than that.

A wise man once said, “Reality denied comes back to haunt.”  That is the truetrue.  But a different wise man also said, "A person who has never made a mistake has never made anything."  I am quite accomplished at mistake-making.  I am so excited to see what is made of more recent mis-steps.  But if the accomplishment of "making" something necessitates mistakes, (def. a act or judgement that is misguided or wrong) can you really call it wrong?

TMI - You Can't Say You Weren't Warned

I have never been so scared.  Ever.  Ever, ever.  All I can think is "please, please don't take it all."  Both nipples will be gone, eventually.  But my strength, my stamina, my.... interest.  I won't even call it what it is.  I am talking about my "libido" and the physical experience of intimacy.  My "interest" is higher than it's ever been in my life.  Intimacy has never *felt* better in my life.  I'm not ready to...  lose this, yet.  The treatment I start today, though, could take that away.  All of it.  And I don't know how to do this.  I don't know how to wait and see if my so very young relationship is going to have to try and weather *another* so very unnatural adjustment.  Not yet.  Just please, not yet.  I don't know what bargain I'm willing to make to keep this piece of me just a little bit longer, but I'm willing to talk terms.  Please?  Hair.  I'd be completely willing to lose my hair and both nipples and never complain about any of it if I can just keep this piece.  That's got to be worth something in a sentimental, "rings of Akhaten" kind of way ~ my dreads are past my waist.  Please, consider it?  It's all I feel like I have left to bargain with.

This isn't a very Buddhist reaction.  This is what they would define as attachment, I suppose.  Except I never had this piece, really, to begin with ~ intimacy I could enjoy that wasn't tainted with one of the myriad of events in my past.  Intimacy I enjoyed that didn't make me feel like I was imposing.  It feels so *good* to be with him, and I am not ready to lose that, yet.  Please?  I *like* feeling good.  I don't think I took it for granted.  But just because you treat a thing exactly right ~ never take it for granted, always appreciate it ~ doesn't mean you won't lose it.  It just means that you did it right while you had it.  It's easier to lose something, though, when you have someone to blame - even if that someone is yourself.  Then something can be done differently "next time" so maybe when the loss present itself again, you know better what to do so as not to lose it.  That's the goal behind learning from past mistakes, so the outcome next time around is better.   This is the first time I am facing the possibility of losing something that I did everything within my power to keep alive.  Everyone involved did.  This should be an interesting piece.  Talk about new territory...

So much to learn... So little time?

Well, I didn't expect that.  Yesterday, we went to our 2nd opinion consultation.  I've never gotten a 2nd opinion for anything.  Now I'm wondering if there is more I should've gotten a 2nd opinion on.  The difference between two doctors can be stark.

But that's not what I didn't expect.  (Great syntax, eh?)  I think I had convinced myself that we had gone through the worst of this.  That we had done enough and that Tamoxifen would be it.  Ooooo.  That was a bit o' good news.  Tamoxifen only *mimics* menopausal symptoms.  It's not actual menopause, even though it limits your estrogen production and blocks those estrogen receptors.  That is good news.  It didn't outweigh the rest of the day.  The rest...  Yeah.  Not so good news.  This doctor said some of the same things.  Grey area cancer.  Recommendations for treatment are harder because my cancer doesn't squarely fall...  anywhere.  I shouldn't be surprised.  That describes my whole life, pretty much.  I've always said I didn't believe in black and white.  That there are no absolutes.  It's nice being right sometimes, I suppose.

But to hear from a second person that chemo is the traditional, accepted, really unavoidable recommendation...  That sent me into a tailspin.  That's what I've been wanting, though, a definitive answer, right?  There is a "chemo~lite" option ~ a less intensive, less toxic chemo route that would still give me the benefit of Herceptin ~ the HER2 protein blocking infusion therapy ~ while experiencing less of the usual chemo side-effects.  But everything had looked so...  promising.  So f#cking promising.  So much...  easier, finally.

All I could feel was "haven't we done enough?"  This has been so hard.  Couldn't it have been...  hard enough, already?  I couldn't even vocalize that for half the day.  I was freaking out inside, but in the middle of it, I couldn't have told you why.  Well, the chemo part, that's kind of a given.  Who wouldn't freak out about toxic poison intentionally injected into your veins, yeah?  Once a week for 12 weeks?  Yeah.  That's definitely "freak out"~able.  But it felt bigger.  Deeper.  More encompassing.

So we let ourselves break down for a little bit.  I just folded into the embrace and sobbed for a bit.  I really wanted this to be over.  All I could think was, "I don't wanna do this."  That's pretty much been my mantra since this whole thing started.  Not really a great mantra for my inner breast cancer badass, eh?  Maybe that's part of the superhero origin story that we rarely hear~or that we don't *want* to hear.  When it's hard~when it's scary~when it's exhausting.  We don't wanna do it.  And I can only assume that everyone who has gone through something hard~something scary~something exhausting, feels that same thing, if only for a little bit.  It just so happens that all the options under the heading "not doing it" are...  not options.  Not for me.  They are just whimsical thinking~whimsical, and apparently delusional, thinking.  So yeah.  "I don't wanna do this."  One step closer to looking that BC badass in the eye...

Discipline

Why has it been so hard, I wonder, to get back in here and do this blogging thing.  I *wanted* to share this experience.  I *needed* to share it.  It's been days and days and days since I blogged.  I publicly wondered why on FB yesterday and received a variety of honest and creative answers.  None of them were right, I've decided.  It's because I don't have the discipline.  Anymore, it feels like I used all of my "let's get this sh!t done" ability in graduate school.  I would like to say I know that isn't true, but if the last 4 or 5 years or so is any indication...  Well...  3 or 4, I guess.  I used to say it was time, or lack thereof.  I never have the "time" for whatever it is that I'm not doing, in that moment.  Lie, lie, lie.  Discipline would have made the time - or at least provided a more honest answer.  The universe gave me all the time I need weeks ago.  Well, three weeks ago, to be exact.  Full right radical mastectomy at 45 in a *very young* (at the time-blog for another day) relationship.  All the time in the world, it gave me.  So THIS is the lesson in this, eh?  Discipline and dedication?  Ugh.  It was so much more entertaining having so many things going on that I could flit from one thing to the next, never staying in one place too long - especially never long enough to *finish* the thing.  Ok...  ok....  I get it.  I'll slow down.

Really, it forced both of us to slow down (ok, short reference to that not-so-new-anymore-relationship).  Maybe it saved us.  Not that we needed saving, but on the flip side of that statement, doesn't everyone?  One of many continually evolving results of this slow down?  I've never felt this strong...  this confident...  this capable...  or this attractive, actually.  I've always known that, for me, confidence - appropriately placed and well-balanced - is sexy.  I've also always considered myself a rather confident person, but I've never really felt "sexy."  And I'm not going all base and carnal and instinct here.  If I say someone is "sexy," I'm really saying they are...  intriguing.  Interesting.  Engaging.  Attractive, but DEFINITELY not just physically.  Magnetic.  Mysterious.  If I call someone sexy, I'm admitting that they have a factor of "irresistible" for me that includes both inner and outer qualities.  Basically, I guess I have to know someone before I can determine if I consider them "sexy" or not.  I've never thought of myself that way.  I've never felt that any of those words described *me.*  Until recently.  Maybe I'm finally getting to know myself a little bit.  Or maybe I've engaged the ultimate self-esteem protective mechanisms~denial and delusion, and someday, maybe tomorrow, maybe next week, maybe next year, it will all come crashing down around my head, and I will look in the mirror, finally seeing the 'mutilated freak' that many have seen in their own post-mastectomy mirrors.  It's a possibility.  In some dimension, I suppose.  But I've looked in the mirror *a lot* over the last three weeks.  I've taken pictures and looked at them.  I've even zoomed in to see the changes up close.  And unless I've *always* been a mutilated freak and just never known it, that's just not what I see.  I see me.  And I like what I see.

I know many women who have had to go through a mastectomy would not agree.  And that's perfectly fine.  I do hope not to be judged by any of my new BC family, but it could happen.  I grabbed the "mutilated freak" phrase from a breast cancer discussion board.  A post-surgery woman wrote something to the effect of, "of course I am wearing a prosthetic until I can have the reconstruction - I would *never* leave the house looking like a mutilated freak..."  I have chosen not to wear a prosthetic.  I will have a reconstruction, when it is medically feasible, but...  I'm almost going to miss this step - this stage.  I like me more now than I ever have in my life.  But if my breast wasn't part of my self-esteem calculation before surgery, it shouldn't be now, either.  Basically, it shouldn't matter what my chest looks like or if I have the reconstruction.  Hmmmm.  I like looking at it that way.

But that still leave thousands - maybe hundreds of thousands - of women out there that are *not* comfortable with how they look post-boob-removal.  I'm not even going to speculate on that.  There are *so* many reasons for that, and none of the reasons are really my concern.  I did read an article recently, though, that got me thinking about this issue of body, health, and self-esteem.  At Salon.com, I ran across an article called "You Don't Have to Dance at Your Mastectomy."  It's about an OB/Gyn who asked her OR - and the entire nation - to dance with her for 5 minutes before laying down on the operating table to have a double mastectomy.  As the author points out, it's the kind of feel-good, oh-I-could-never-be-that-strong-but-thank-god-someone-is kind of story that eventually makes it way onto Lifetime or the Sundance Channel, inspiring reporters covering to quippingly ask "What do you do before a double mastectomy?  Dance, of course!"  The author's response to that answer?  "Blow me."

I can definitely see how most people would not dance into *any* surgery involving the word cancer.  But I can also see how some would.  I might even venture to say "have to."  But just as a dancing mastectomy shouldn't worry about how others in similar situations behave, shaking, scared, crying mastectomies shouldn't compare themselves to the dancers.  I'm willing to bet~largely based on personal experience~that the dancers have their own hidden demons, they are just different than the ones that make you shake and cry and freak out in the face of cancer.  They are the demons that make some people dance, instead.  But don't let them fool you.  They are still demons.

http://www.salon.com/2013/11/08/you_dont_have_to_dance_at_your_mastectomy/