No News is Good News or This Thing Called ‘Beauty’

I realize that I haven’t blogged in weeks.  But there really hasn’t been much happening in The Cancer Games arena as of late.  Everything has fallen into a relatively predictable routine.

Treatment continues.  I always dread a new round of chemo. But every time I get one, it’s never as bad as I think it will be.

The fatigue and the headaches have become pretty manageable with strategically placed naps and medication.

My eyebrows and fingernails are hanging on for dear life, but I’m hoping I will make it through to the end without losing them.

Round 4 brought on a new side effect… The Hot Flash.  Oof… It only happens once in a while and it usually only lasts for about 30 seconds, so it isn’t horrible… but it has been 95 degrees outside lately, so it isn’t easy to ignore, either.

But the good news is that I will live through an entire summer without having to shave my legs or wax my bikini line.  Ah… just like the golden days of middle school.

Two rounds left.  Looking forward to the end.  And very excited about getting this effing port removed from my chest.  I don’t know how Iron Man puts up with the irritability.

The funniest thing to happen in the arena lately came about a couple weeks ago…

I was out to dinner with my family.  I had my little hat on, but I guess it doesn’t really fool anyone that there’s no hair underneath it, as proven by the bald man sitting in the booth next to us who jovially commented to me while rubbing his head, “Looks like we’ve been to see the same barber.”

Ballsy move, Mr. Clean.  You are fortunate that I have a sense of humor about all of this.  That comment might have sent a different girl running to the bathroom.  Sobbing.

While I did find his comment quite hilarious, I am constantly amazed by the things people will say to me.  It’s as if the realization that I have cancer suddenly makes them forget how to be human beings.  I’m keeping a list.  And hope to one day see the dream of publication for my coffee table book “Things NOT to Say to Cancer Patients” come to fruition.

But there is one thing that someone said to me recently that has been ruminating with my spirit ever since it was spoken. It was not about cancer at all.  It was after first preview for a show I’m currently in and the director was giving us notes.  And he gave me the following note:

“Be beautiful.”

What does that even mean?  I could write an entire separate blogpost on how you can’t accomplish ‘being’ anything.  A character can only be defined by her actions.  What she does.  You can’t just play beautiful.

I digress…

What this note did for me was send me into a thought process of how I might define beauty.  And what I might do onstage that could later be described as beautiful.  And somewhere in the array of thoughts, I got caught up in how world standards define physical beauty.

And as I examined myself, I could scarcely find a trace of it.

The complete baldness.  These odd, transitional, snowglobe-esque breasts.  The dry skin.  The dark circles under my eyes.  The rash that accompanies every round of treatment. The swelling in my face and appendages.  As Laura says in The Glass Menagerie, “In what respect am I pretty?”

Don’t misinterpret.  There is zero self-pity here.  I’m not fishing for compliments or validations.  In fact, quite the opposite.  I can honestly say that complete self-acceptance has never been more present in my life as it is now.

But I began to ponder… to what extent do I myself allow a person’s physical appearance to effect the value I might place upon them?  Or even the value I might place upon myself?

I have never thought of myself as being superficial.  But in truly examining my life, I have to admit that I am disappointed in just how much I tend to revere external beauty.  It is something that has definitely gotten the better of me before.  I’ll quote TN Williams one more time, “I don’t know how he did it, but that face fooled everybody. All he had to do was grin and the world was bewitched.”

I’m not saying there is anything wrong with appreciating someone’s physical beauty.  But I’m astonished at the extent to which we cherish something that we have so little control over. What we look like is a result of a random spinning of the genetic wheel.  Why does it matter so much?

And not that it matters so much to everyone.  My niece, I think, has shown the best example of how little it can matter.  She has not batted an eye over the change in my appearance.  She kisses all my boo-boos… even the ones that gross me out.  She takes extra care with my port site, telling me frequently that I need to put a band-aid on it. (Sometimes she says ‘boo-boo-daid’ and it is the best.)  The little mole on the back of my head (which I’m super self-conscious about) that is now exposed?  “I like your mole,” she says when she rides piggy-back and can see it.  And no matter how awful I look, as long as I still wear dresses, she sees me as a princess.

And she’s not the only one.  But I am in awe of the people who can honestly look past everything physical and see true beauty.

And who is to say that the breasts I have now are any less beautiful than my real ones were?  The scars I have are amazing representations of the strength I didn’t know I had. The baldness, a reminder of a day when some of the people who love me the most gathered around me with complete care.  And maybe I’m not turning heads at the bar anymore, but this spirit inside of me feels mighty fine.

And despite the hang-ups I seem to have about outward appearance, I treasure what lies in people’s hearts the most. And I am beginning to work on shifting my paradigm around what physical beauty amounts to, the importance I’ve let it play in choosing partners and the standards I have held for myself.

And on that note… I will leave you with a link my friend Blue shared with me last week:  The TuTu Project  I hope it brings you as much joy as it did me.

End cancer chapter 10.

Recovery Report

Day of Surgery:

After a fairly sleepless night, AA, SKA and I headed to the Breast Imaging Center at 7:45am.  I sang my heart out to some Avetts on the way there.  (They always seem to help. With everything.)  HB, KL and FG met us there.  After checking in, we all sat in the waiting room, cracking jokes and making way too much noise.  We received some dirty looks from an older gentleman who was reading the morning paper.  (I still can’t figure out why he was there so early in the morning, as he didn’t seem to be waiting for anyone.)

The woman called me back for my injections.

Surprise, surprise… the 1 injection per breast I had been informed about was in reality 4 injections per breast, strategically placed at the North/South/East/West poles of each nipple.  (Reminder: I hate needles.)  But I had my boobie-stress-ball with me (thanks JT).  Squeezed the shit out of that thing and chanted my meditative ‘ow-ow-ow-ow-ow.’  But, really… the injections just felt like little bee stings.  Not nearly as bad as I thought they were going to be.

On over to the hospital surrounded by my fleet.

Check-in.

Of course I encounter problems with my insurance company on the scariest day of my life.  SKA and FG were ready to bolt into action, catapulted forward by wonderfully over-protective levels of testosterone.  (I love you guys so much.) But the lady behind the counter worked hard to figure things out, finished the paperwork and put a hospital band around my arm while dryly mumbling, “Here’s the designer bracelet you just paid thousands of dollars for.”

Lots of waiting.

They call my name.

I go back.  Put all of my belongings in a plastic bag provided by the hospital.  Change into a beautiful purple paper gown. The nurse comes in to take blood samples, start IVs, get me ready for the anesthesiologist.  Panic is quickly rising in my chest.  I tell her about my great fear of needles and that I don’t think I can breathe through it today cause I am effing terrified of what is about to happen to my body.  She calls me honey, sweetie, baby.  And she promises me that she will do everything she needs to do with one needle.

One prick.  That is the only pain I will feel at all before I fall asleep for 6 hours.

And she keeps good on her promise.  One prick is the only pain I feel.  And it lasted for 3 seconds.

She answers the rest of my ridicously fearful questions after the needle is in my arm.  And then she brings my entourage back to stay with me until I go to the operating room.  AA, SKA, FG, HB and KL are all there with me.  We hang out for about an hour and a half before the surgeons come to talk to me and they feed the sleepy drugs into my arm.

And we laugh.  And laugh.  And laugh.

I don’t even remember all of the hilarious things we talked about.  But there were so many jokes being made. Ridiculous stories being told.  And I laughed so hard and loud that there was no longer room for fear.  And I was so grateful to be surrounded by some of the people who love me the most. And we kept laughing until the sleepy meds were given.  I have no recollection of  being wheeled away, but HB told me later that I was waving and smiling big as I sent well wishes to everyone.

And then I wake up about 5 hours later.

I expected waking up to be some horrible experience filled with pain and remorse.  But it’s not at all.

I open my eyes.  I’m cold, but way too groggy to feel anything.  They wrap me in blankets and call for AA to come back and see me.  Apparently, even more people have gathered at the hospital while I was out.  All of the nurses keep talking about how they have never seen so many people waiting for one person to wake up.  Awesome.

The people in my life are awesome.

AA appears and tells me that JH has been telling all of the hospital staff that he is my husband so that they will allow him to come back and see me.  AA told them the truth.  And I’m glad she did, because the nurse starts to rip the pretty purple paper gown off in order to put my real clothes on and my newly cut upon chest is completely exposed.  I am greatly unaware of anything that is happening and the next thing I know…

I am at home.  AJ is giving me a scalp massage.  People are holding my hand.  I feel warm.  And the only pain I felt in the entire day were little bee stings in the morning and 3 seconds worth of a needle prick.

The fear of the unknown leading up to the day of surgery was so much worse than anything that happened the day of. Thanks be to the sweet baby Jesus.

Stuff is happening around me.  People are eating.  The TV is on.  My dog is there.  People are loving me.

And I sleep and sleep and sleep.

Day 1 Post Surgery:

I wake up with a lot of tightness in my chest.  So much tightness that it is hard to breathe.

There are drain tubes coming out of my chest.  And a pouch full of pain medicine hooked into my stomach by some more tubes.  No one thought we needed to feed me pain medication throughout the night, because the pain pouch/pump/ball is feeding Lidocaine into my system continuously.  But we were wrong.

SKA filled the prescription for me the night before and is quick to rush a couple of Percocets over to the recliner for me.

After a couple of hours, the tightness goes away.  I am sore all over and really sleepy.  But, overall… I am not in pain. Which I did not expect.

In my mind… life was going to be excruciating for weeks. And I was going to be miserably unhappy because I didn’t recognize my own body.  But I really feel okay.  And I look like me.

The plastic surgeon put expandable implants in my chest yesterday after the mastectomy and partially filled them with fluid to start the reconstruction.  That, coupled with the bandaging, even gives the impression that I still have boobs.  And my skin still looks the same all the way down to my ‘cleavage’-line.

There is no regret over my decision to remove both.  And the tightness I felt when I first woke up continues to be the only real pain that I have felt.

Take that, Cancer.

Already… I have won.

Day 2 Post Surgery:

Really feeling good.  Pain is utterly minimal.

I need help sitting and standing, just because I can’t use my arms at all to steady myself.  And I can’t lift anything more than my water glass.

The pain meds seem to have no affect on my coherence. They just make me a little sleepy.  Of course, I can’t sleep in the bed at all… lying flat pulls at the muscles in my chest, making me uncomfortable.  And I can’t lay on my side cause of the drains, nor on my stomach… for obvious reasons.  So I spend a lot of time dosing in the recliner.  Which is nice.

Dad came into town today.  I think he was relieved to see that I’m coherent and virtually pain free.  My spirits are up and everyone is taking great care of me.  I’m eating.  I’m walking.  And I’m laughing.  A lot.  Life is still good.  Even without tits.

Day 3 Post Surgery:

Today I got to remove the bandages around my chest and take a shower.  Hallelujah.  AA took pictures of my torso with the bandages on and again once the bandages came off.  I have not been brave enough to look at them yet, or even to look down at myself naked.  I kind of let my eyes blur out of focus when I got in the shower so I wouldn’t see anything. (Which… really… a shower never felt so good.  Thank you, God, for the modern miracles of indoor plumbing and hot water heaters.)  AA says everything looks great.  And I’ve even got little bitty boobies from where the surgeon has begun to fill up the expanders.  I’m just not ready to look.

Photo after first post-op shower with chest drains and pain pump.

Day 4 Post Surgery:

MG arrived today to join in The Cancer Games.

Amazingly awesome.

Also, they removed the pain pump from my tummy today. All the Lidocaine has been fed into my system, so the pump was just hanging empty from my body.  Actually, they said we could remove it ourselves.  “Yeah.  Just pull it out and throw it away.”  Neither AA nor I felt good about this scenario.  So we went to Dr. A’s office to let him handle the situation.

I’m laying on the table and his nurse starts to remove the first tube.

“Oh, my god, oh, my god, oh, my god,”  AA is saying.  “It looks like a reeeeeally long piece of angel hair pasta.”  And it’s starting to make me feel queasy.

“Here.  Squeeze my finger,” Dr. A says in his bright Bolivian accent.  “It will help.”

Yes.  I squeeze his finger.  And it does help.  A little.

The nurse starts to pull out the second one… and this one hurts a little.

“Look, look!”  Dr. A heckles.  “You pull the string and it makes her eyebrows go up.”

Afterwards, they put silver sparkly band-aids on my tummy to cover the pump’s exit wounds and Dr. A gives me a piece of chocolate.

Done and done.

I was ready to go back to rehearsal today.  Badass.

But most importantly:

After much focused effort and many failed attempts… today… Praise be to the Heavens above… I pooped.

I have never before been acquainted with constipation.  My body functions like a well-oiled machine.  But these pain meds have kept me out of business for the past 4… count ’em 4… uncomfortable days.  It has been hellacious.  But today, I had a moment of premonition.  I closed the bathroom door, announcing to the household, “I think this is it!”  And it was.  Sweet relief.  And after, when I opened the bathroom door… AA and SKA met me with congratulatory applause.  I have not experienced praise like this for making a poo since I was two years old.  But I soaked it up.  And everything about it felt good.

Day 5 Post Surgery:

Today was the first day that I cried.

So… I have these drains coming out of my chest… one tube from each side where a breast used to be running down to these little clear grenade looking guys where fluid collects. (See picture above.)  This is supposed to help prevent infection in my chest.  The tubes are being held to my body by a couple of stitches on each side and the grenade looking guys get tacked onto my clothes (or when I take a shower onto this elastic thing I hang around my neck) with safety pins so they don’t flop around, supposedly preventing any pulling on my skin.

Now… somewhere along the line, the thousands of dollars I am forking over to pay for medical procedures doesn’t cover the cost of safety pins, cause these effers are flimsy.  So today, as I’m getting out of the shower, one of the pins pops open.

And the drain drain drain came down down down.

Falling from up by my neck all the way to the floor.  And the pulling on my skin I mentioned earlier?  Totally happened.

Excruciating pain exploded through my left side.  ‘Ow-ow-ow-ow-ow-ow-ow.’  Only this time, the meditation was screamed at the top of my lungs.  I hear AA reply with, “I’m on my way!”  She bursts into the bathroom.  I am gripping onto a towel rack for dear life, writhing in pain, convinced that the whole tube has been ripped from my flesh and that blood must be spurting everywhere.

It isn’t.  Everything’s fine.  But the tears start to fall.  And they keep coming.  Until they turn into laughter, cause AA is shooshing me and patting me like she would a 4 year old after a small fumble on the playground.  “Well, something had to go wrong,” I say.  And by now the pain is gone.

And… I got to poop again today.  So, really… You win some, you lose some.

End cancer chapter 4.

These final hours

Yesterday was my last day with my tits.

I spent the day at home.  Hung out with friends.  Ate fish tacos.  Had some tasteful pictures taken of them.  Walked my dog by the foot of the snowy mountains.  Watched the sunset.  Cried whenever I needed to.  And went to bed in my silkiest bra.

Sleep never really came.  I spent most of the night feeling panicked that I was making the wrong decision about having both breasts removed.  And even as I type… knowing I have two hours before they inject my breasts to numb them… I am drowning in fear about making an irreversible mistake.

Irreversible.  I’ve thought about just that one word a lot in the past 24 hours.  Yes.  I am about to undergo an irreversible procedure.  But how many things in our life are irreversible?  Our first heartbreak.  And any heartbreak thereafter which leaves a wound that tends to ache when we least expect it to.  Losing virginity.  Having a child.  There are plenty of irreversible things in this world that are worth doing despite pain and fear.  Does this qualify as one of them?

I don’t know.  I have no idea of all the things I will feel when I wake up this evening and have no breasts.  I pray that regret is not one of the emotions that makes it onto the list.  But right now… sitting in bed in my silky bra… that prayer is all I have that provides comfort.

I do know that there are things in life that I would give my left tit for.  Hell… even both of them.

I would give my tits:

To write an award winning play.

To see what my niece becomes when she grows up.

To sing my heart out from the stage of The Grand ‘Ol Opry. (Far-fetched but true.)

To adopt and care for children who need homes.

To grow old with the love of my life.

And as I face this surgery today with a heart full of fear and sadness, I keep reminding myself that this is exactly what I am doing today.  I am giving my tits to be able to accomplish all the things that live on the list of what is most important to me.

Keep breathing, G.  Keep breathing.

End cancer chapter 3.

Haiku to my Boobs

Tonight, the lovely AA is throwing me a ‘Boob Voyage’ party.  Some of my favorite people will gather to bid a fond farewell to my killer tits.

In honor of this occasion, I have written a haiku to appreciate the life of my two dear friends:

The soft supple curves

rise and fall over my heart.

Comfort resides here.

Take one last good look at them.                                         They will be greatly missed.

Symmetry vs. Sensitivity

It’s been exactly two weeks since my diagnosis.  My surgery for breast removal has been set for January 12.  And between now and then I have to decide between one tit or two.

Every medical professional I have spoken to since the diagnosis has said that the other breast, my right one, will have to be removed eventually.  Waiting to remove it later leaves me with a 70% chance of the cancer coming back. Removing it now leaves me with only a 10% chance of the cancer coming back.  Seems like a no brainer, huh?

Yeah.. but it’s not.  I like my boobs.  Given… the left one doesn’t really look like it belongs to me anymore.  The tumor behind the nipple has gotten very large, so it’s super swollen, still pulling my nipple inward.  And I can still kind of see the remnants from all the bullet holes left after the biopsy.

But my right one still looks great.

And it’s soft.

And it’s me.

It leaves me feeling very torn about having it removed now as opposed to later.  It means zero nipple sensitivity for the rest of my life.  And, come on… we all know how AMAZING the nipple sensitivity thing can be.  And it’s not just about sensitivity during sexy times.  They’ll never get hard again when I’m cold.  Weird.  I’ll never know what it feels like to breast feed my child.  Sad.  Does this make one of them worth keeping?  “Yes,” says a large part of me.

But here’s a thing… if I keep the right tit… they will not look the same.  Or feel the same.  My surgeon has said she could augment the right one slightly to help it match the reconstructed one as closely as possible… but they will not be a matching set.  And, from a guy’s perspective… I can only imagine:  Going to frenchy-town with some girl.  Having a good time.  Moving in for the feel-up.  Discovering… duh duh duh… Gasp! …two completely different breasts on one body!  Oh, the horror.

So… the question remains… Sensitivity for me?  (and possibly looking a little like Frankenstein)  Or symmetry for whomever will be there to enjoy them?

Well… there is also the option of having both breasts removed but keeping the right/healthy nipple.  My surgeon says that I’m not an ideal candidate for this given the size of my areola.  (She measured it… humiliating… and it’s a hair past ideal width.)  But, I think if I pushed for it, she would be understanding.  I would lose some sensitivity, as they can’t save all the nerves in a breast removal, but I would still have most of it.  In my ideal cancer world… that is what I would do.  Remove both tits, but keep the healthy nipple.  However… I have invasive ductal carcinoma, meaning my cancer started in my milk ducts.  And my genetic counselor says (as she points to a model of a breast, running her finger along the milk duct down to the nipple), “All roads lead to Rome.”  If I keep the nipple… it is likely cancer will re-form in the right tit on the tissue around the implant.  And as my current tumor is directly behind the nipple… it seems likely any new lumps would form behind the kept nipple.

Not to mention… having everything removed now means that I don’t have to go through all of this again a few years down the road.

Of course I am leaning towards having both removed now.  But I am terrified of the loss that this means.  And this decision is for the rest of my life.  So, like a good Libra, I remain indecisive.

Losing both breasts…  Am I ready for that?  Can I make that decision in 5 days?

End cancer chapter 2.

Diagnosis

I thought I had an infection in my left tit.  That’s the beginning of this part of my story.

So… I schedule a checkup.  I’ve just moved to a new town, so it’s a new OB/GYN… not one I’ve seen before.  The doc is making the routine circular motions all the way around my boob.  And then she stops right over my nipple.  ”You have a mass,”  she says.  ”Didn’t you feel this?”  Well, no.  I didn’t feel it.  Nor did my OB/GYN back home when I had my yearly two months ago.  What I had noticed was that my nipple had just started to invert a little, which is why I thought I had an infection.  ”You have to see a breast surgeon.  Today.”  Says the OB/GYN.

Awesome.  Way to incite panic.

So, I see the breast surgeon late on the same afternoon.  She does an ultrasound on both my breasts.  ”It’s an infection,” she says.  Whew.  Okay.  That’s what I thought to begin with.  ”We’ll start you on some antibiotics and you’ll come back in a few days.  If it’s not cleared up by then, we’ll drain it and get you back to normal.”  Sweet.

Four days later… full of antibiotics… I go back to the surgeon.  Another ultrasound.  She says the nipple looks better, but my breast has gotten larger.  Another ultrasound.  Whatever is behind my nipple has in fact gotten larger.  She says she will have to do surgery to get all of the infection out.  An outpatient procedure.  Just one incision, really.  But before the surgery, I should have a mammogram, so she can have a clearer image of the infection.

Mammogram the next morning.  The radiologist discovers that the mass behind my nipple is taking up almost all of my breast tissue and there are 3 smaller lumps around it leading up into my armpit.  ”This is more than an infection,” says the radiologist.  ”We need to do a biopsy on the mass and each of the lumps and an MRI to see how active these cells are.”

Biopsy the next morning.  I am the world’s biggest baby when it comes to needles.  They have to take three to four samples (aka chunks of flesh) from each lump.   (“Ow-ow-ow-ow-ow-ow-ow-ow-ow” is how I respond to each needle.  And I broke the stressball they gave me.)  So at the end of it… I have about 16 tiny bullet-looking-holes running from my nipple up into my armpit.  Awesome. Then the MRI, with an IV in my arm. (“Ow-ow-ow-ow-ow-ow-ow-ow-ow” )  And back to the breast surgeon, who pulls up my images.  ”Now, we won’t know for sure until the results from the biopsy come in,”  she says.  ”But you see this?”  She points to the MRI image of my left breast, which is lit up with white and red pigments, as opposed to the image of my right breast which has zero lit-up cells.  Apparently, the lit-up pigments are all the cells in my breast that are growing super fast.  ”We normally only see this type of activity in cancerous cells.”  The C word.  The screen of her computer starts to fuzz over.  My eyes blur and feel stingy.  I cannot speak.  The surgeon pushes the box of kleenex across her desk towards me.  She continues to say that we won’t know for certain until the next morning, but I know this is her way of giving me the bad news before she has to really give me the bad news in the morning.

And sure enough.  The next morning, December 23, 2011, 8:30am.  It is official.  I have breast cancer.  They will be unable to save my left tit.

End cancer chapter 1.