Tuesday, August 31, 2010

Rocking the Crap and The Wabi Sabi

Thank you Shell for the guest appearance text while I was writing tonight, and telling me I am "rocking the crap" as a reply to my self doubt.

You know about Wabi sabi?  No it's not that spicy green paste you put on your California Roll.  Wabi sabi is a Japanese worldview that beauty is found in imperfection and simplicity, guided by three realities, "nothing lasts, nothing is finished, and nothing is perfect."

Nothing lasts.

I feel myself racing towards all this change, trying to hold on to my familiar and savor it as long as I can.  How ironic, only now, I am keenly aware of the change that shadows all of us!  I went a little early to pick up Robin from Band today, to watch him learning to march.  I stood in the shade next to the Band Room building, and watched as son number two and a large contingent of middle schooler's followed commands, sir and yes sir.  Was it that long ago Robin scooted around this house in a walker, his two fingers in his mouth, chasing the cat and bumping into furniture and cupboards like a pinball wizard?  He looks down on me now, wears a full set of braces, a size 14 slim pant, and seems so much older since entering 8th grade just a couple of weeks ago.  Where is my baby?  Slurping cup o noodles he packed in his own lunch, no longer throwing pasta from his high chair.

I thought about buying some new bra's, cause I really need them, and then realized, why?  To wear them a couple of months?  It will be a whole new gig for me after surgery.  Yesterday when we took Robin to get some shoes for school, I wandered into the lingerie department adjacent to shoes.  I looked for "C" cup bras, whoa, look at those, as Robin tramped up and down shoe aisles in his Tony Hawk skater shoes.  C cup.  Pretty soon mine will fit in these.  Weird baby.  Freakin weird.

Nothing is finished.

I thought I would be grown up by now.

I did not think there would still be so much confusion and struggle and growth.  Awkward growth, damned awkward growth.

and there is always something to clean.  Dang.  Clean and organize.  How did all this stuff get in this house?  Will it ever be finished?  Will it ever look like that dream I dreamed?  Where the hell did all this stuff come from?  Will I ever be finished paring down, simplifying, and organizing?  Let me learn to live with less, except cash, cold hard cash.

Nothing is perfect.

Welcome to my imperfect life, imperfect soul, imperfect heart, imperfect body.  What a mess I have made of some days.  What a mess.

Beauty in the imperfection. All around me. A candle burns, this day winds down, I did not make much of it, just lingered through it.  I was tired and quiet, but when I was changing the water for my birds, the crazy hummingbird buzzed me, then floated in the air inches from my face, sucking the Russian Sage that is a purple riot now.  So close, so close, inches away from me, feathers shimmering and sparkling.  I'll bet he doesn't cry when his favorite flowers are not blooming.

I boiled red potatoes and when they were soft, mashed them with butter and salt and pepper and milk, to go with the dinner.  Chunky warm buttery soft potatoes.  Good.  Simple good.  I created slammin mashed potatoes today.  That was my contribution to the universe.

White fuzzy head, growing more and more each day.  Eyelashes coming back, what a surprise to find more when I put mascara on.  One day hardly there, the next, wow, I got lashes.  Brows still barely there.  Remember when I used to wash and roll and fluff and spray my big blond mop?  Now, I rub and marvel at fuzz.  Lots of white white fuzz.  More feathery then hairy.  Big Bird.

I don't know what the hell I'm doing, or if I'm doing this right.  I just keep doing it, winging it, flying by the seat of my pants, to keep from blowing away or falling into a manhole.

Am I doing this right?

Wabi sabi.  This life.  Beauty in imperfection.  Embracing and resisting that nothing lasts, nothing is finished, nothing is perfect.

Wabi sabi my brain and heart.

Peace as you find your way too.  KISS.  Keep It Simple Stupid.

Rock the crap.







 

Monday, August 30, 2010

Off To Meet The Wizard

Today was my consultation with the first of two general surgeons that True North, my plastic surgeon, referred me to.  This fellow would be responsible for the mastectomy portion of my surgery, and then True North will come in and work her magic on me.

Husband and I sat in the waiting room, flipping through magazines.  There was an article about artisanal cheeses from California in Wine Spectator magazine.  I could have written that article.  That has to be my next project, among several writing projects, getting my butt out there writing freelance articles for magazines.  I know I could do it.

It wasn't long before we were escorted into his office, he sat behind a large desk, and we were seated in front of him in two large leather chairs.  We started talking, I had typed up a profile of myself, with all the relevant info taken from my mammo, MRI, biopsy and PET/CT scan.  He had looked over that, as well as examined the MRI CD I brought with me.

He started asking questions about my health history, and so on.

Let me just say right up front,

I LOVED THIS GUY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

He really does remind me of The Wizard.  He is a smaller stature man, balding with white hair, has a great smile, and a very fatherly way about him.  He is very direct and a straight shooter, but he has such a great bedside manner, voice and smile.

I felt like he cared about me.  That may sound goofy, but it makes a huge huge difference.  I felt like he was going to do the job he had to do regarding my cancer, but was also concerned about helping my plastic surgeon achieve the best cosmetic result for me.  [Exactly the opposite of a remark first surgeon made - "It will just be something to fill a cup."] We talked for some time and then he took husband and I into the exam room.  I also liked his way with Husband, very hospitable and inclusive.

In the exam room, Flopsy and Mopsy got a working over like no other.  It was the most thorough breast exam I've ever had in my life.  At one point, when he was muscularly kneading my right breast within an inch of its life, I said "Are you making focaccia"?

He laughed and slightly blushed.  I appreciated his thoroughness.  He examined both breasts thoroughly, molding them and shaping them and throwing them around like Playdough.  He also did an exam into both armpits and up into my inner arm, under my breasts, feeling all along my rib cage and along the sides.

This man was on it, and I could see his brain doing the math, like an old calculator where the paper advances forward as the accountant punches in numbers without looking at the keys.

We talked more in the exam room, and I told him about weighing the decision over keeping or removing the right breast, Mopsy.

His answer was the most concise yet.  Of course I can't give you verbatim what he said, but will give you his take on the talking points.  As I listened to him, I swear, I felt like Dorothy sitting down at the campfire with Professor Marvel, the scene where Toto steals his hot dog and Marvel convinces her not to run away.  There was something so fatherly and compassionate about this guy, I wanted to jump up and run home to Auntie Em.

These are the main points.  Even if I do a reduction on Mopsy to make her match the new Flopsy, a good portion of her will be reduced and reconstructed anyway.  I could do a mastectomy on Mopsy where he will keep the breast skin and the nipple, and just scoop the breast tissue out like a melon.

The DIEP procedure, where they do the tummy tuck to make new "breast" tissue is a one time shot.  If I just have Mopsy reduced, and at some later point, cancer occurs over there and I need a mastectomy, I'd have to put an implant in.  At that point, I'd have natural feeling tummy tissue in Flopsy, and an implant in Mopsy.

He also said the psychological factor every year when I'd be having Mopsy Mammo'd and MRI'd can be very very stressful for most women.  Also, there is a 6% chance each year of an increased risk for cancer in the right breast.  That's a 60% chance by the tenth year, and I'm young.

I told him I never want to go through this again.  He said "Well, there's your answer.  You have answered this yourself.  Why not just do the whole thing and be done with it?  I'm sure, you will also have a much better cosmetic result as well."

You mean I won't have to have mammo's and MRI's?

Nope, he said, there won't be breast tissue in there.  It will be tummy tissue.

He felt that given what he saw on the MRI, he agreed with the mastectomy for Flopsy because of the tumor size and spread to the lymph node.  He agreed the cancer was too close to the nipple to keep it, but felt he could keep the outer breast skin.  He also said he'd take a few more lymph nodes on the left side just to make sure there is a clear margin with no cancer.

I told him about the possible insurance problem with the micro surgeon, and this was his advice.  First of all, its obvious he has the utmost respect and admiration for True North and her work.  This is a very specialized procedure and you have to have someone who has done a lot of these.  True North has.  He said the micro surgeon's portion of it should not be a significant portion of the bill.  He figured the portion I'd have to pay will probably by less than what I am dreading, maybe more than I am hoping, and in the end, will probably all work out!  He said in these cases, he has often seen where the insurance company does finally rollover since the patient is not purposefully trying to go out of network.  He made me feel very hopeful.

He also said if it does turn out I can't use True North, he wants her to refer me to a new plastic surgeon, but he would be happy to give me any input I might need from him.

I left that meeting feeling so good, in his hands.  I don't even know if I'm going to keep the other appointment with the other recommended surgeon.  I just had that solid gut feeling this is the guy.  I mean, come on, I already have The Good Witch, I need a Wizard.

I left there feeling whatever happens, he would make his sound advice and help available to me however I needed it.  He was very genuine and personable and I can't say enough how much I liked him.  He shook my hand firmly and enthusiastically, and looked me straight in the eye.  This is my guy.

I meet with the micro surgeon on Wednesday, and that will start the process with my insurance company when he puts in an authorization and they see he is not in network.

At this point, I feel like True North and The Wizard are my surgery dream team.  I really do.

Pray for me, send me good thoughts and joo joo that all of the stars will line up for me, and I will be able to have these people create the new me.

I forgot to tell you, or maybe I did, chemo brain, I am tentatively scheduled for surgery on October 26, and Duncle Dody reminded me, it's my grandmother's birthday.  His and my mama's Mama, the maker of pastina.  I think that is a very good omen.

I am spending this evening visualizing myself in the operating room, with True North and The Wizard working their holy magic on me, cutting and scooping, creating, molding and stitching an even better version of moi.

Send your good thoughts and creative visualization into the Universe for me, and if you are the praying kind, or have an in with God, talk to him about me.

I am throwing the dice into the air, hoping they land on the operating table with the brains and hearts and hands of True North and The Wizard helping me find my way home.

There's no place like home, there's no place like home, there's no place like home.

Come on baby, come to Mama, Mama needs a miracle!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Sunday, August 29, 2010

Wash, Rinse, Repeat and A Wounded Pink Elephant

After two restless, turbulent nights of scant sleep and decadron (crack for cancer patients), I find the deprivation and drugged state leads to mounting anxiety and obsessive thinking.  I refer to this as the "Wash, Rinse, and Repeat" cycle of over thinking and tail chasing.  I lived this whole day here, and like the little hamster on the wheel, got no where, fast.

My thoughts were encumbered by some ancient personal issues in me, as well as my version of Custer's Last Stand - resistance towards the path, towards which way the horse is facing, towards what is coming, the inevitable that cannot be fairy tale'd away.

Let me spell it out very simply to you.

You ever been to the La Brea Tar Pits?  Seen those lakes of tar, all bubbling and stinking and inescapable for the prehistoric creatures that wandered in a little too close?  And then the tar baby effect, first a hand is caught and then a foot, then trying to free those, now both hands and feet are in the enveloping goo.  Before you know it, you are sinking like quick sand into the black creature while it morphs around you, seemingly devouring you.

Raise your hand if your own thoughts have created this holodeck of tar for yourself, and you spent the better part of a late night and a day and into this night trying to extricate yourself.

Oh.  Just me.  I raise my hand.

I am stuck in review material.  I am hitting the replay button expecting a different result.  I am trying to crash through another wall of denial regarding this diagnosis, my upcoming surgery, loss of the familiar me, fear of the new me.   It's just the familiar malaise revisited when you are kicking and screaming to hold on to what is leaving,

and blocking the door to keep out what is coming.

Damn.

Breathe.  Breathe.  Breathe.

Wherever you go, there you are, it's just that now, in addition to all your usual stuff, you've got cancer, are dealing with the effects and side effects of treatment, and crashing into menopause like a pink elephant into a fragile tower of one thousand stacked crystal glasses.

That "you" referred to up there is me, and my pink tutu is reeking in champagne and shards of crystal are embedded in my bleeding elephant feet.

Oh these highs and lows, sensing good is on the way, and the next day, walking through the valley of the shadow of death.

So much of this is out of my control, and so much of my suffering is in my complete control.

How much longer before suffering loses its allure to me?

I keep thinking I'm there, and then, I'm there again.

Breathe.  Breathe.  Breathe.

This is how it feels sometimes doing your soul's work.

Most of which, has nothing to do, with cancer.

Psalm 23

The LORD is my shepherd, I shall not be in want.

He makes me lie down in green pastures,
he leads me beside quiet waters,
he restores my soul.


He guides me in paths of righteousness
for his name's sake.
Even though I walk
through the valley of the shadow of death, 
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.


You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.

Surely goodness and love will follow me
all the days of my life,
and I will dwell in the house of the LORD
forever.

Saturday, August 28, 2010

Not Bad for a Bald Lady

This is what it looked like, days after losing all my beloved goldilocks.  It took me awhile to get to a place inside myself that I could post these photos joyfully.

Now, I wear this bald head like a Badge of Honor, like a Purple Heart, purple for survivor!!!!!!!!!!!!!!!  Go girl!!!!!!!!!!!












Rosy Buddha




Soon I will post the update photo, with my fuzzy Easter chick head.

Love your life. Work with what you've got. Be grateful. It's all good and even when it's bad, good is on the way.

Good is on the way.

Can you feel it?

Friday, August 27, 2010

Chemo Twister and God's Cake

Thank goodness our weather has cooled down.  It has really helped my arm not feel so swollen and achy.  I arrived at the Cancer Center a minute or two after nine this morning, Vonda came to get me.  She and Kitty were alone to take care of all The Good Witch's patients today, so a bit understaffed.  Of course they handled it with finesse and a fair amount of running.  I sure do love those gals.  It's weird, now that I am on this countdown of only 4 rounds left, I'm feeling a bit of melancholy about not showing up here every Friday morning.

What the hell you say?

There are the things I won't miss anymore, having Vonda shove a thermometer into my kisser to get me to shut up (not really, I like that).  I won't miss getting on the damned scale every morning, although finally the scale is budging in a good direction, down.

I won't miss Kitty's little cart of pain.  This morning she had to peel away the Tegaderm covering and redress the area.  You know about Tegaderm?  It's like a cellophane clear bandage that sticks on super tight, way better than cling wrap.  It covers the whole area where my PICC is.


my PICC 
It is specifically designed for IV sites and surgical wounds to keep out water, viruses and bacteria.  It's pretty cool but when you have to wear it weeks on end, and have super sensitive skin like I do, it starts to rub and get raw underneath.

They change the dressing weekly, but my skin is reacting.  Kitty says that is normal but uncomfortable.  A part of the PICC line that is slack buried itself into my tender skin and Kitty had to clean it all out today.  She rearranged the line and reapplied Tegaderm to give the irritated and raw parts of my skin a break.  Then she had to sterilize the whole thing with alcohol and the purple stuff that turns orange.  Ouch.  Ouch.  Alcohol burns like a mo fo, especially going into that little hole where the line goes in.

To make sense of the above photo, at the bottom where the smallest curve of the line is, is where the PICC goes into my bicep and into my vein that threads all the way up to my shoulder, crosses at the collar bone, and goes into the vena cava.  The slack comes out of the hole and is attached to a snap holder.  The line continues up to the valve where the IV is plugged in.  That's how it works.  The ache comes because every time you flex your bicep, it contracts the vein with the line in it.  Also, because the whole set up is on the underside of my arm, it is always resting against my body.  I have to say though, the discomfort is dramatically reduced.

When Kitty plugged in the IV to start my chemo, I knew right away somethin was up.  As soon as it started, I feel the coolness run down the line on my arm and into the hole, then a metallic, medicinal, putrid taste in my mouth was immediate and the strongest its ever been.  I got very groggy right away, and goofy.  I wasn't sure if I'd be able to drive home.

I will miss the little conversations Kitty and I have, she is such a comfort to me.  So is Vonda, bounding up and down the hall like a retriever in a dog run.  Such a comfort to me during all this hard hard shit.

I was able to drive home, like a little old lady with my Handicap placard hanging off the rear view mirror.  I got home, and went upstairs to lay in my bed.

I spent the next several hours very sick, like when I was on AC.  Oh no, what the hell, I thought I was through with this?  Where are the usual Taxol symptoms, the redness and flashing, the itchiness, the feeling as if I am having a big allergic reaction?  Only the redness and the flashing came, along with nausea, dizziness, and diarrhea.  I hope you aren't eating your breakfast when you read this.  Sorry.

This was week 7 of the Taxol, and I have been on chemo for 4 solid months now.  I don't know, maybe my body is getting saturated with the stuff.  It was a very very long day, just laying in my bed.  I did take some Lorazepam (Ativan) and that helped a little as far as settling me down, but didn't do much for the dizziness and nausea.  Just as the nausea eased up later this evening, my Decadron high kicked in.  Crack for cancer patients, that's what they call it on the cancer message boards.

So here I am now as I write, a little queasy, very red, super hot and flashing, and wired like a yuppie after too many Starbucks.

As labgirl said to me last week, when I told her about the latest that happened with my PICC, she said "Well for as bad as you have it, you have it pretty good.  You look great.  Way better than most of the chemo patients I see who have been on it a lot less.  You are doing good."

Um, speaking of labs, I was naughty.  I didn't go get my labs done yesterday.  I swear, for the two days I worked, my brain was completely erased of my cancer routine and I completely forgot about it.  I woke at 3 am this morning, shot up in bed and thought "Shit, I didn't get my labs done."

Kitty scolded me with a look, still gave me chemo and told me to get them later.  I was so sick today I didn't go.  I will go on Monday.  It'll be fine.

(I just noticed there is a whole section of my blog missing here! What the hell.  I think I was talking about meeting the first recommended surgeon on Monday, meeting the micro surgeon on Wednesday, working Wednesday and Thursday night, heading into chemo on Friday.)

I meet with the second recommended surgeon the week after, and hopefully will be able to start making some decisions here.  Husband called the insurance company today to begin the discussion regarding the out of network micro surgeon, and how we are choosing everyone else who is in network, and have no choice regarding him.  The insurer told Husband the micro surgeon's office needs to file an authorization, which will happen when I meet with him, and that will start this process.  Insurer will review the situation and make a finding about how they will pay.  If we are not happy with the decision, we can appeal it.  I sure hope it happens, and all of it gets done before the end of October.

When I was at the Center, I spoke a bit to my friend who works at the radiation desk.  "Sally" who reminds me of the cute flying nun, suggested I could get in to see the radiation oncologist for a consultation now instead of waiting.  She thought it would be good to do this early, prior to making my decision about reconstruction at the time of surgery.  The radiation oncologist will give me the best insight on the pros and cons of radiating newly constructed breasts.  I will also be talking to The Good Witch about this.

So you got all that?  I have to write this stuff down and keep a binder of my care.  Sheesh.  I need a cancer secretary.

You know what amazes me?  While in the waiting room at the Cancer Center, I always chit chat with other patients, and many of them don't know the medicines they are on, and very little about their treatment.  I've been thinking again about being some kind of breast cancer advocate or spirit guide.  I think I'd be a good one.  I will talk to The Good Witch about this.  I think having a survivor as a resource right in the office would be really helpful.  I don't know exactly how it would work, but I know there are other Cancer Center's that have them.
I'm going to look into it and volunteer as the Hostess with the Mostest.

Kitty always reminds me God has a plan.  Yulie sent me a cool little email, one of those forwarded thoughts.  This one was about God's cake.  The moral of the story?  You may not like the taste of any of the individual ingredients as they go in to your cake, but the finished product would not be the same without all of these specific ingredients.

"Yes, all those things seem bad all by themselves. But when they are put together in the right way, they make a wonderfully delicious cake! "

God works the same way. Many times we wonder why He would let us go through such bad and difficult times. But God knows that when He puts these things all in His order, they always work for good! We just have to trust Him and, eventually, they will all make something wonderful!



That's some cake God is making for me, from scratch.  I hope there are lots and lots and lots of candles on it...



Thursday, August 26, 2010

Coffee, Tea or Me

Well, I finished my work week!  2 nights.  Woo hoo.  I'm pooped.  Hey, don't laugh, that's pretty damned good for a girl with 4 months of chemo under her belt, and 5 rounds to go.  I think I miscounted before, yes, I am down to 5 rounds.  Tomorrow is 5, then next Friday is 4, then the Friday after that is 3, then the Friday after that is 2, then Friday, September 24 is the last one,

and then Saturday, September 25 I will be drinking a martini, or maybe a Cosmo, no wait, a top shelf margarita with salt, wait wait, no rush, I have plenty of time to figure it out.  I'm really not a drinker at all, except when I can't drink at all, then I want one.

Saw one of my regulars tonight at work, so happy to see me.  "Hi, so great to see you, I love what you've done to your hair" she says.

Gulp.  Uh wait till you see what I'm going to do to my boobies...

That's a hard thing, who do you tell or who not to tell.  Don't get me wrong, I don't mind telling people, I just hate springing it on em when they are out to enjoy a nice dinner and then here comes cancer girl -

HEY GUESS WHAT, I HAVE BREAST CANCER, THIS IS A WIG, AND WHAT WAS YOUR NAME AGAIN, CAUSE I HAVE CHEMO BRAIN...

Sure is good to have my apron back on, but things are changing.  People coming and going at my job, where usually there is no turnover.  For the longest longest time, I was the new girl.  That was two years ago.  Lots of changes.

Good luck Yulie on your new job, I sure will miss you honey.  Let me say again, that video you and your man put together for me of all the work crew will always rank as one of the most thoughtful, kind, funny, poignant, loving things that anyone has ever done for me.  Thank you so much Yulie for all the little messages and photos, for calling me chicklet, and just for all the love and cheerleading for me.  Thank you Yulie.  I know we'll still see each other, but I will miss buffing glasses next to you at the end of the night and complaining about the boys not doing shit.  Big big hug girl.  Here's to your success and prosperity at the new job!  and don't be shy about wearing your hair up honey, you have a beautiful face.

You ever have basil garlic mashed potatoes?  M-m-m-m, especially when a piece of pan seared Alaskan halibut is nestled into it.

One of my guests tonight said that when I explain the specials, it sounds like pornography.

See what I'm saying?

Another said "You know, the way you describe food is fabulous, like you were a writer or something."

Uh huh.

I've been mulling over my next blog, the one after this, THE FUN ONE.  I plan on writing as cancer girl until Mother's Day of next year.  That will be one year in the life of a cancer diagnosis, chemo, surgery, reconstruction, radiation, and easing in to my new normal and living with my new body.  I hope to God and Jesus that is the end of my cancer blog.  FOREVER.

Despite the material, I do like this rhythm, writing everyday, and I'm going to come up with some kind of sexy girl blog, all about living the high life, while still being a Mom and a wife.  Kind of a favorite things/favorite places/favorite cocktails/talk from behind the apron kind of deal.  You'll see.  It's going to be fabby.

Sure is good to be back at work, and sure is good to finish my 2 day week. HA!  

Back to the Cancer Center in the morning, to all my angels, and my heavenly poison.

See you on the flip side.

Wednesday, August 25, 2010

Nine to Five, More like Five to Nine

I can see I need a new plan here on the nights I work.  Should write the blog during the day, not when I get home!

I am one pooped happy puppy.  I can't tell you how great it is to be back on the job.  It's a little dicey here and there, really pushing my physical strength right now, and have to be careful with the arm.

It is all worth it.  For the five or so hours I am on the dining room floor, all I am focused on is doing my job and doing it well thank you.  Its great.

You should have seen some of those plates tonight, OMG, the ribeye special, damn, listen to this.

25 day dry aged ribeye, grilled, roasted fingerling potatoes, sauteed broccoli rabe, Cabernet reduction on the plate, finished with crumbled blue cheese, and big ass onion rings.  Uh, big ass was not in the description, that's just for you.

Oh baby.  Come to Mommy.

One of my tables tonight, a two-top, as in two guests, ordered the ribeye and drank a bottle of Opus One cab they brought in, then a bottle of effing Paradigm cab ordered off our menu.

What a way to go.

Visions of ribeyes danced in her head...

night.

Tuesday, August 24, 2010

On a Horse With No Name

Today was another quiet day for me with very low energy.  We are having a record breaking hot spell, and although we have air conditioning and I stayed inside, the heat really gets to my chemo self and has caused my arm to swell and ache again.  I am flashing all over the place, all red cheeked and fanning myself like a Southern Belle in a petticoat.  I sure hope it cools down tomorrow when I go to work.  When you're bald and flashing everywhere, wearing a wig is like wearing a wool beanie to Death Valley.

I made phone calls today, scheduling initial consultations with both of the general surgeons that True North recommended.  I meet with one of them next Monday, and the other on September 7.  True North had also asked that I meet with her surgical partner, a microsurgeon she does all of her surgeries with.

Here is the dilemma.  Both of the recommended general surgeons are on my plan and "in-network."  So is True North.  The problem?  Her microsurgeon partner is not.  I do have a PPO, but that doesn't help me much.  The out of pocket deductible for an out of network provider is $500, and the maximum out of pocket for out of network services is $4,000.

Let's put it this way.  With all this out of pocket out of network stuff, I may be shit out of luck using the plastic surgeon that would probably be my first choice.

That sucks.

Microsurgeon's office is going to contact my insurer, and I will talk to True North's Patient Coordinator, but I don't think there is any way to get around this.  I've already met my deductible and out of pocket for in network.  I just can't afford to take on another $4,000 in debt.  Very frustrating.  Will keep you posted how this goes.  When I meet with the surgeons, I will ask for plastic surgeon recommendations if it does not work out with True North.

This is something I keep re-learning with this cancer thing, just when you think things are headed in a certain direction, it all changes again.  It does you no good to sit in the saddle of this thing, facing the horse's ass, doing everything you can to get the horse to change direction.

You have to face the direction the horse is going.

This is not easy to do when you get these ideas in your head, or your heart set on what you should do and how and when and who.

You have to roll with it.  Face the direction the horse is going, and just hold on to his mane.

My horse has taken me on all kinds of circuitous routes, damn, some of them so frustrating and challenging. No matter how I felt about the path, that didn't change it one damned bit.

You just have to settle down, weave that mane through your fingers and say "Ok horsey, nice horsey, take me where you're taking me."

I'll give you the parade wave as I ride by.

Happy Trails.

Monday, August 23, 2010

Fairy Princesses and The Powers of Darkness

Victory in struggle with the powers of darkness is the true baptism into the glorious company of heroes, the true initiation into the overmastering beauty of human existence.  From that awful encounter of the soul with the outer world, emancipation, wisdom, and charity are born, and with their birth a new life begins.  Bertrand Russell, A Free Man's Worship

So how was your day?  Do anything exciting?  Struggle with the powers of darkness?

Monday seems to be my tired day, I guess all those hours awake over the weekend on my decadron high finally settle on me like a blanket and a cup of hot chocolate.  Mellow Mondays.  Pooped puppy.

I saw the twin princesses yesterday, like little creatures from some other world.  So fragile and delicate and beautiful, and I don't think I've ever seen the Cowgirl glow like that.  I held one and stared at her sweet face in slumber, so mesmerized and then I'd look up and see her Mama holding the other and feel the shock all over again.  There are two.  Two of these.  Two.

It was wonderful.  Like a dream but it was real and so are they.  I rocked a wish and a prayer in my arms, but it was real now, and wore a striped beanie and jammies that covered the tiniest of hands like oven mitts.

Makes you think.  Makes you think about a lot of things when you see a miracle up close like that.  Seems like forever ago Batman and Robin were tiny like that, but I haven't forgotten.  I used to miss their baby selves terribly, missed having a baby in the house.  For a long time, I regretted I didn't have more children.  Holding those little girls yesterday, I left thankful that I am where I am in my life, that my boys are the age they are, and now, I get to work on me.  Evidently, right on time, cause I apparently need lots of work.

I only have a couple of months left in this cocoon of my old life and my old body.  Pretty soon here the new me will emerge, wings all wet, ready to unfurl and make my entrance.  I take that back, there won't be any unfurling for several weeks.  This year, I won't need a Halloween costume cause I'll still be wrapped up like a Mummy and walking hunched and stiff like one too.   The unfurling will take place later.

Won't need Christmas lights this year either, just put my glowing radiated self out on the front porch, drape some garland on me, and place a big red poinsettia on top of my fuzzy head.

Summer is ending, and with it, winding down a passage in my life in this body.

I am not so good with change either Vonda, but what's a girl to do?  You have to go with the flow, let go of what is going, close your eyes and

Believe in what is on its way.

No peeking.

We can hold hands though.

     





    

Sunday, August 22, 2010

Crusty Crow's Feet

I have started going back into my old posts and putting photos in.  Still learning how to customize my blog; I am better with the word than the technology.  I'd like to put a photo in every post,  but since there are over one hundred of them, it will be like a scrapbooking project.  If you are interested, go back into the archives for the month of May, and you will find photos in the following posts:

The Two Bravest People on the Planet
One Tequila in the Right Direction
Finding Chemo
Curve Ball and a Can of Whoop Ass

I think it's amazing what the photos do for the words, I wish I had started a long time ago.  I'll get there.  Scrapbooking my blog.  I have lots of media to get in to this blog.  Wish me, the technically challenged, luck.

A couple of updates for you, my arm has been much better, as far as the swelling and numbness since getting the PICC.  Most of my discomfort now is central to where the line goes in to my bicep.  It is much much better though.  I notice the more I flex and use my right bicep, the more the entry point gets upset and irritated.  On the other hand, the more I flex and use the arm, the overall arm feels better.  Go figure.  My bullet hole is much shallower although still draining quite a bit.  It's a little nasty packing it, but I've gotten used to doing it.  True North also mentioned that packing the wound is the best thing to do for one that is slow healing.

As you know, I finished 4 tough tough rounds of AC over 8 weeks, and I am now half way through my 12 weekly doses of Taxol.  Six weeks to go baby.  That is going to be one graduation like none other, when I finish chemo.  September 24.  That's my last one, God and the Universe willing.
 
The early side effects I was having with the Taxol are so much better.  No more of the sunless sunburn, just occasional hours or two over the first couple of days where I get all red faced and hot.  Maybe I'm flashing.  I don't know.  Haven't had a period in weeks now.  The sores on my lips and gums are long gone.

I've been having some new side effects, all fairly subtle, but damned annoying.  I've had some burning and blistering on the bottom of my feet.  Hands that are numb and stiff and claw like in the morning, but loosen up fairly quickly.  A whole lot of eye twitching and some blurred vision.  I continue to have extreme watering in the outside corners of my eyes, and get crusty crow's feet.  M-m-m don't that sound good, like if you were a damned coyote ordering fast food.  "Yeah, I'll have an order of crusty crow's feet with tumbleweed fries and a cactus shake."

You have to take those stool softeners the first few days after chemo, or there'll be trouble.

Generally though, my stamina, my energy level, my spirits and my body strength are improving.  Although I could outlast the vampires on the first two nights after chemo with insomnia, I am sleeping better throughout the rest of the week, and not needing to nap as long or at all during the day.

Have I mentioned the fresh crop of white peach fuzz on my head?  It's somethin.  Fuzzy wuzzy was a bear.

I continue to have terrible dry mouth, and always need gum.  Thank goodness for the Biotin toothpaste and mouthwash, it really helps.  Honey, you have no idea the parch in this parched.

Also, very very dry skin, mostly on the hands, arms and feet.  I moisturize my face and near my eyes way more than usual.

So there you have it, 14 weeks into chemo, this is what it looks like.  Overall, I think I look pretty damned good.  It's all the love.  It's all your love.

Now listen close on this next stuff, all you cancerous and non-cancerous readers out there in la la land.

One of the things on my mind quite a bit lately is knowing when to let go, knowing when to hold on.  This seems to be a constant metaphorical theme for me.

In retrospect, I can see in my life all the open doors I did not walk through because I was camped out clawing at the closed doors.  Wah Wah Wah, let me in, let me in, crying at the closed doors, the ones I was never meant to go in.

Damn, you have no idea what an epiphany this is for me.  You better read the paragraph above one more time.  It's a doozy from a fuzzy wuzzy.

Lord, help me, help me, let go of the handle of the closed doors, and look for the next open door, and simply, step in.

Help me Lord cause I am stubborn this way.

and Lord, one more thing, when I am in the hallway, and can't yet see the open door, let me close my eyes and keep walking and crawling in Faith, knowing the door is there, it was always there, waiting for me, to cross its threshold.

Help me Lord, find my path, one stumble at a time.

Hear my prayer.

love, your stubborn girl

Saturday, August 21, 2010

Easy as One, Two, Three

The Grand essentials of happiness are: something to do; something to love; and something to hope for.
Allan K. Chapman, writer

Sounds pretty easy doesn't it, when you simplify it this way.  Easy as one, two, three.  Easy peasy.  Winner winner chicken dinner.

Something to do.  I realized how much I like doing my job.  Being a server on any given night, is the best job in the world, or the worst job in the world.  Most nights, it is the best.  I like the beginning of it, getting the dining room ready, lighting candles, folding and stocking napkins, and mostly pre-shift.  We review the menu additions, and I get to hear some of my favorite words like clafouti and gorgonzola and zabaione.  Soon guests will arrive, and I will recite the specials in the most sexy, enticing, delicious way I can.  My favorite is when selection of words and the sound of my voice is rocking them in a cradle and cooing to them, and sometimes they say "Could you just say all of that over again, just like that..."

and I like the middle of the evening too, when the dining room is humming with laughter and conversation, flatware hitting plates and corks being tugged out of bottles, high heels on a maple floor, and crystal glasses chiming like church bells when carried to the table between the fingers of a server's hand.

I like the ending of the night, guests are leaving and we take back our space, cleaning and polishing and stocking to restore it to the beginning again.  Counting my money, saying goodnight to my co-workers, walking out in the cool night air and loosening my tie.

Having something to do, what a relief I am doing mine again.  Scheduled for two shift this coming Wednesday and Thursday, and thrilled to have this become the focus of my week instead of labs on Thursday and chemo on Friday.  Shall I wear one wig Wednesday, and a different color on Thursday?  Yes, I think I will.

Having something to love.  I love my family, I love when we are all in the house together, don't even have to be in the same rooms, but we are all here.  Usually there is a tv going, a kid on a computer, a candle burning, dogs at our feet, music playing, and cookies baking.

I love my friends, my close friends, my work friends, my new friends that take such good care of me.  Is there anything better than greeting and hugging a friend, or sitting across a table, drinking, talking, eating good food?  I love the phone calls and the text messages, and the cards and the letters.

I love writing and playing the piano.  I plug out of my body and into my soul when my hands are on a keyboard typing, or on a piano composing.  When I write, or play melodies, I wade into a flowing river and float in cool crisp clean water, closer and closer to my truest, highest self and Creator.  I often play the piano very late at night, somehow it is truer and richer and sweeter when the moon is my muse.

I love nature, in my garden, watching the mockingbird defend this yard he thinks is his, or the squirrels that have turned the top of our fence into their freeway, the hummingbirds that come to suck my fuchsias, and the doves who come to bathe and coo in my fountain.  I love the wild places, walking near the strait close to home, the sound of water lapping the shore as a tugboat chugs by.  Walking on paths lined with eucalyptus, leaves shaking like soft percussion while birds sing the melody.

I love lighting a candle, opening a book, rubbing on good smelling lotion, taking a bubble bath, or sometimes, just laying in my bed late at night, the rest of the house quiet and asleep, listening to the wind blow the chimes that hang on the house just outside my bedroom window.

There is so much more to this list of things I love, and people I love, and animals I love, and love love love.

Something to hope for.  I hope for the return of good health and a long long life.  I hope for the health and happiness and safety of my family and all the people I love.  I hope for peace in our community and country and world.  I hope for a return to prosperity for our country, health care for everyone, opportunity for all who seek it, and food for so many who go hungry among us.  I hope for tolerance, and kindness, and patience with one another.  I hope my favorite shows, like Men of a Certain Age and Glee, are on for many more seasons.

Three simple things.  Something to do.  Something to love.  Something to hope for.

When I think of my life in this way, when I measure my life like this, I forgot how happy I am.

I need to remember to come back to this, as often as is necessary, and write down these things I love to do, and live to love, and hope for.

Will you write your list too?  Take a moment to jot down these things, make your list, and see how happy you forgot you really are.

Will you tell me some of what you wrote?  You have been awfully quiet lately.  You still there?

Talk to me.

I miss you.

Friday, August 20, 2010

Oh Canada and Keep Going, True North

Big day today, feeling sore and achy after working last night, but so happy I did.  Sure felt good.  My arm was in some pain, but got better over the course of the day.

Met with much exalted and recommended plastic surgeon today.  In honor of her home country and it's national anthem, I will call her True North.  There is something deeply true and genuine about her from the moment she shakes your hand.  She has a great presence, Diva in the highest noble order.  Our first hello happened when she came out to the waiting room and got Husband and I herself.  That was a brilliant touch.

True North has an engaging, charming presence, and fabulous physical presence, reminding me of Christie Brinkley for her blond model good looks, and Gabrielle Reece, the former professional volleyball player, for her healthy athletic body.  I liked True North very much and felt very comfortable with her.  It was also great to see her little baby bump, twins coming at the end of the year!

We initially discussed my diagnosis and pathology reports, and discussed whether or not I could be a candidate for a DIEP, the tummy tuck into breasts option.  I asked her a few questions about it, and then she recommended we go ahead and do an exam of me, and we'd chat after that.

For the exam, she asked me to put on a kimono and get naked, except for my flip flops, and left the room while I changed.  When she returned, she had me stand in front of her, open the kimono and let her take a look at all my 51 year old glory.  After we went in to another room and she took naked photos of me, my before pictures.

There was something absolutely terrifying and exhilarating about having the photos taken.  She has an incredible coffee table photo book displayed in her waiting room entitled Reconstructing Aphrodite by photographer Terry Lorant.  The book is filled with incredibly beautiful photos of breast cancer survivors displaying their new breasts and/or bodies and telling their story.

Wow.  Is it possible I could have that in exchange for all this misery, trauma and loss of my former body self?

It is easy to see that True North has a caring, affectionate way about her, and it seems as though she is truly motivated and excited about transforming patients bodies and their lives.

After the exam and photo session, we went back to her office to discuss.  She said I would be a very good candidate for a DIEP, and felt that depending on the surgeon's recommendation, agreed with a left mastectomy for Flopsy, and a prophylactic mastectomy for Mopsy.  She explained we can only do one tummy tuck, and not disregarding my cancer, her focus is the cosmetic appearance of my new body after surgery.  She highly recommended we do the whole thing for the most symmetry and satisfactory result.  It would also eliminate the need for an implant if in some future date a recurrence of cancer were to occur in Mopsy.

She explained during the procedure, I would need three surgeons.  The breast surgeon, the plastic surgeon (her) and the micro-surgeon.  She gave me the names of two highly recommended breast surgeons, and the fellow she always uses for the micro-surgery portion.  She recommended I meet with all of them, and then come back and meet with her to discuss lots more information regarding the DIEP.

After the appointment with her, I met with her planning coordinator and they tentatively scheduled me for surgery on October 26.  I was both impressed and a little taken aback by their expediency to close the deal with me, so to speak.

Overall, I left the office feeling as if I had found the right person for the job.  Very impressed with her, her staff, and her positive attitude and belief that she could achieve a result I would be very happy with.  This is obviously her calling, and was inspired by her father, a surgical oncologist.

This evening, out of curiosity I decided to check out any reviews of her on Yelp.   There were several glowing reviews and three unsatisfactory ones.  The nature of the unsatisfactory reviews were very unsettling to me.  I do plan on discussing them with her.

I can see how plastic surgery results are very subjective, the same as dining in a restaurant.  I work at a fabulous restaurant, as you know, and sometimes our reviews on Yelp are absolutely brutal.  I know this.

I will be making appointments with the surgeons and hope they concur with the reconstruction at the time of my primary surgery, and will give me their assessment of True North's competence and abilities.

My chemo for today, which is usually first thing in the morning, was scheduled for this afternoon.  It was awful cute, Vonda texted me when I was running late from meeting with the plastic surgeon, asking where are you girl?  I told her coming from the City and Kitty, my chemo nurse knew I may run late.

As much as I hate the torture, I always look forward to going in to the Center.  First up is Lady Brown Sugar Grace at the front desk.  How she makes me laugh and want to high jump the counter to give her a big hug.  She is pure love.

Then Vonda always comes bounding round the corner like a Golden Retriever, with a welcome just short of a lick on the face. Love u too girl.

Then of course Kitty, wheeling her little tray over to me, and hooking me up.  We have great little snippets of conversation here and there during my chemo, about God and life and lessons and trust and faith and trying to get by.

Oh and Mariah and Krissy, always a loving hello and checking on me.  More angels.

I keep saying this, but I won't stop saying this.  How could I ever do this without them, my angels at the Cancer Center?

I was so tired when I got home, it's weird how at first after the chemo I feel so groggy and tired.  After a few hours, that subsides and the wired arrives.

Hello baby. Make yourself comfy, we will be up a couple of days together.

For five more weeks, I will sleep only a few hours over the course of two days, Friday and Saturday.  These are the nights I open the door to who knocks, my creative muse who always brings along my shadow.  On these nights of sleeplessness and restlessness, I make company with the two.

Inspiration and Vexation.

I hope you sleep tight when I wander the streets tonight, letting myself in to your house, eating out of your fridge like Nigella, cuddling in your bed next to you, whispering things in your ear like

Love your life.
Seize the day.
If you are going through Hell, keep going. (thanks Winston Churchill)
If not now, when?
Just do it. (shout out to Nike)

I will give the doggies and kitties in your houses treats, I will let myself out quietly, and when you wake in the morning, I hope you wake refreshed and happy, bright eyed and bushy tailed, and make something really good for dinner tomorrow night too.

Cause I'll be back.

Let me tell you one more thing.  Last night at work, my handsome busser, my favorite, was so happy and surprised to see me, in my red wig no less.  He is usually a man of few words and teases and plays with me a lot.  He really touched me last night.

He got tears in his eyes telling me about some of the things he has been going through in his life since I've been gone.  He said when he gets really down, he thinks about me and all that I am going through and how brave I am, and he says to himself "I don't have problems" and gave me a big hug.

At the end of the night, he was done before I was, he gave me a bear hug and whispered in my ear.  "Keep going."

Ok baby.  Ok.

Thursday, August 19, 2010

Glory

Two little twin girls were delivered early early this morning, waiting until Thursday to arrive.  I told the Cowgirl, maybe it was the nursery rhyme.  Wednesday's child, full of woe.  They wouldn't have that.  Not these girls.  Thursday's child?  Far to go.  That's more like it.

I think President and Vice-President sounds good.  How bout you?

Cowgirl sent me a photo in a text message, the two of them snuggled on her lap, in their hospital beanie's and wrapped in blankets like little papoose's.  Would that be papusi?  What a miracle.

Two.  Two girls.

In other news of miracles tonight, I put on an ironed apron.  With pens and wine key and crumber in my pocket, I cinched up my tie, shored up my resolve, and put on a red wig.  I walked in to my job, with a brain that felt it had been erased by chemo.  You ever not ice skate in a really really long time?  When you lace up those skates and step out onto the ice, you ever have that moment where you think you won't remember how to do it?

That was me tonight.  Whew.  So anxious.  As soon as I walked in the door, there I was, all of it waiting for me, and I was like a ballerina out on the rink.

It was a rather uneventful night as restaurant night's go, but so great to be back among my peeps, and opening wine, and watching fabulous plates go out, and do it all, in a red wig.

There was a moment, on the dining room floor, that I left my body and saw myself.  There I was, like a magician, the ultimate illusion.  My guests had no idea they were waited on tonight by a lady in the middle of chemo, bald head hidden underneath a layered red wig, a bullet hole in my chest, and an IV hidden under my crisp white shirt.

As I drove home tonight, I cried, just overwhelmed by taking back a piece of my life, and feeling as if I had accomplished something really big.

I am proud of myself.  It takes guts to do what I did tonight, smack dab in the middle of five months of chemo.  Hairless but fearless.

I took something back tonight.  Ripped it right out of cancer's grip.

I can't really articulate what it was, cause of chemo brain I guess, but can describe to you how it feels.

Strong like a mountain.  Weak in the knees like a teenager in love.  Joyful like Christmas morning.  Fragile like a newborn.

I might as well have run the Boston Marathon and crossed the finish line.

Out of breath, running so fast, towards my life.

Wednesday, August 18, 2010

The Case for Mopsy

As you know, I am thinking about what to do about Mopsy when Flopsy is retired.  The following article, from WebMD, was very interesting reading for me.

 

New Debate on Breast Removal to Prevent Cancer

Study Suggests Counseling May Change Patients' Opinions About Prophylactic Mastectomy
By Denise Mann
WebMD Health News
Reviewed by Laura J. Martin, MD

March 26, 2010 -- Counseling on actual recurrence risk can lead to a reduction in the number of women who choose to have both breasts removed when only one breast is affected by cancer, new research shows.
Many breast cancer survivors believe that their risk of developing breast cancer in their other breast is about five to 10 times higher than it actually is. As a result, more and more women are opting for a prophylactic mastectomy (surgical removal) of the unaffected breast, even though there is no evidence that this will affect overall chances of survival among women at low or moderate risk for breast cancer recurrence.
Ajay Sahu, MD, a breast surgeon at the Frenchay Hospital in Bristol, England, noticed this trend in his practice and sought to determine why 27 women aged 31 to 65 who underwent a mastectomy on the breast with cancer were also requesting the surgical removal of the other breast, and whether or not a "cooling off period" and counseling would help them understand their actual risk of recurrence and lead them to change their minds.
It did.
After one year, 23 of these women chose not to have a prophylactic mastectomy, Sahu reported Thursday at The European Breast Cancer Conference in Barcelona, Spain. Women all received chemotherapy and/or radiation after their mastectomy to kill any errant breast cancer cells, and they were counseled and followed for one year. After one year, women who still wanted to have their other breast removed were offered the surgery.
The women, all of whom were considered at low or moderate risk for breast cancer recurrence, were asked why they wanted to have both breasts removed at the time of their initial diagnosis.
  • Twelve women in the study said they wanted the other breast removed because of family history of breast cancer.
  • Four women said that a family member or friend had a bad outcome with a single-breast mastectomy.
  • One woman wanted to avoid radiation.
  • Three women wanted a prophylactic mastectomy due to their young age, even though they were considered low-risk for recurrence. 
Seven women had lobular breast cancer, a cancer that begins in the milk-making glands (lobules) of the breast, and can be difficult to diagnose by mammogram.
After counseling and the cooling-off period, "[women] had an understanding of actual risk of bilateral breast cancer, an understanding that the risk can be reduced by treatment and surveillance by annual mammography, and that no survival benefit is conferred by the operation," Sahu says.
"I felt that the time of diagnosis was a moment of increased stress and not the right time to make such a decision," he says in a news release. "The 'cooling off period' actually helped to reduce anxiety (although we did not explore this specifically) and helped the women to be comfortable with the decision they made in the end," he says.
He plans to continue this study on more women to see if the results hold.

I keep going around and around about this.  I don't know how much fear is influencing my decision making process, as well as being a current chemo patient.  Hello???  It's got to be a huge factor psychologically.  When you are in the thick of it, the thought of ever having to go through it again is unimaginable and downright repulsive.
I plan on discussing this with the plastic surgeon Friday morning, not that she will help me make a decision regarding my cancer.  Rather, if I do have the DIEP done, which is the tummy tuck procedure, doesn't it make more sense to do both at the same time to achieve the best uniform result?
I realize that everything I may think about this right now will probably be thrown out like a baby with the bath water after meeting with her.  I do think it is telling that after a "cooling-off period" many of the women decided against the bilateral mastectomy.
I plan on posting about this topic on my favorite breast cancer message board (Network of Strength) and see what the response is.  I can't tell you what a resource this has been for me, talking to my cancer peeps and cancer sorority sisters.
To update you on my arm, I've been taking ibuprofen every six hours and that has helped.  I will continue with that over the next couple of days, until chemo on Friday, when I'll have my favorite nurses take a look.  The numbness and swelling is about the same, but it's not worse!
While I was sitting here writing my blog tonight, Batman came through the door with a goodie bag for me!!!!!!!!!!!  Thank you Mama Dez, you are the best!!!!!!  I loved it.  What a fabulous surprise!!!!!  How thoughtful, I absolutely loved it!!!!!!!!
Presents are good.  Very good.  Me likey.
I will be putting on my apron tomorrow afternoon, putting my wine key and crumber in my pocket, brushing on eyebrows cause mine are almost gone, and giving the red wig a little extra tease.
I absolutely cannot wait to go back to work tomorrow night.  Wish me luck, and wish my co-workers luck too, cause I'll be slobbering and hanging all over them!!!!!!
I'm a little worried about getting really hot with my wig on, but will jump in the walk-in if I need to cool down.
Here I go, will report tomorrow night!!!
Woo hoo!!!!!!!!!!!!!!!!!!!









Tuesday, August 17, 2010

Friends in High Places

I got the call this morning from the surgeon's office; arrangements made at the hospital, go over there as soon as I can.  They don't officially have me on the schedule, but will fit me in between all their scheduled patients.

That is code for be prepared to wait, it's going to be a long day.

Hello Hospital Admissions, this place is getting a little too familiar.  The same lady who always checks me in was there.

"Hey, hi, Aw, why are you back so soon?"

Aw.  Aw.  Aw.  Uh huh.  Back so soon.

She checked me in and put the required wrist band on me.  I've cut off more than my fair share of those these last months.

I headed down to Imaging.  The check-in nurse was the same as last Thursday when I got my PICC put in.

"Hi, Aw, why are you back so soon?"

I took my seat in the waiting room.  Waiting...  Actually not waiting that long when one of the technician's came out and said "Mrs. Clay?"

Here I am, I waived.

"Wayne sent me out to tell you he's finishing something up and will get you in there in about ten minutes.  Sorry for the wait.  What's going on with your arm, having problems with the PICC?"

I couldn't believe they were already getting me in.  It pays to have a hook-up in Radiology.  Never thought I would.  I do now.

Wayne passed by a few minutes later and called out "Hey Deb, I'll just be a few minutes."

A room full of people waiting, Mr. This, and Mrs. That, but I am Deb.  I got a kick out of that.

I mean, if you're going to have cancer, if you're going to have to go to the hospital a lot, and have all kinds of tests done, and get poked and tortured, it might as well be by people you really like.  Right?

It wasn't long before Wayne took me back.

"Ok so here's the deal.  We weren't sure why a venogram was ordered for you, it's not what we usually do to check this out.  First, tell me what's been going on, and we'll go from there."

We are in a small room, and in it was one of the cute floral upholstered chairs I think are normally in the room where you get a mammogram.  I sat in the chair, quite comfortable, and felt like Little Miss Muffet.  With cancer.

I told Wayne about the swelling in the arm and down to the hand, and the numbness too.  As I talked he removed the little net sleeve over my PICC.

"Where's all your dressing?  Where's all your bandages? and why does the line have so much slack, like it was pulled on??"

"Um, I took them off, last night, my arm was really bothering me and they were coming off.  I don't know about the line."

He gave me a look, like bad bad Little Miss Muffet.

He had gloves on and started to clean me up with alcohol.  He wiped the entire area.

I asked him something, which I can't remember now, I think asking is he sure about the extra slack, and I touched and pointed to the PICC line.

He gave me another look.

"Uh, do you see how I have gloves on and I am sterilizing this whole area?"

Oops.

"You have to be careful with this."

As he said that I felt some of the alcohol go in to the hole where the line comes out of my arm.  Ouch.

"You have to keep this covered at all times.  Bacteria could travel down the line and go straight into your heart, and we don't want that."

Gulp.

Wayne examined the area and examined my arm.

"Ok, so here's what we are going to do.  From what I see of your arm, I think everything looks ok, yes, there is some swelling, but I am not overly concerned about it.  I am going to tell the radiologist (Dr. Zen, who performed my biopsy, was on today).  He may want to do an ultrasound just to check your upper arm and in to your neck area.  If he oks that, I will talk to the ultrasound people to get you in there."

"You mean, I'm not going to get poked today and shot up with dye and..."  I could have cried.

"Nope.  Not today.  You've had an ultrasound, they don't hurt, right?"

I could have done the ice cream and cakey cake dance right there.  I got up from my comfy chair, figuring I'd need to go back to the waiting room.

"That's ok, if you would like to wait here, that's fine."

I sat back down.

I like you Wayne.  Thank you.

Wasn't long before Dr. Zen came in to see me.  Pretty much said everything that Wayne said and that he would look at the ultrasound and call over to The Good Witch's office with the results.

They both left.  Wayne came back a couple minutes later.  "Ok, you're all set, they will come get you in a few minutes from ultrasound, they know where you are, and will come get you in here, so make yourself comfy."

Do you know today I was whisked through, without an appointment in two different departments, faster I think than when I've had an appointment?

Wayne.  Thank you Wayne.

Couple minutes later, they came for me and escorted me down the short hall and around the corner to the ultrasound room.  Last time I was here it was not long after my abnormal mammogram, and I remembered the look of a black hole on the screen of a starry sky.  You remember?  My beautiful breast of a starry sky, with a black hole that could be measured.  Something there that could be measured.

The technician asked me to undress from the waist up, put a gown on half way to keep my right arm and neck area exposed, and she'd be back in a minute after I changed.  I did and hopped up on the table to lay down.

I looked up at the ceiling.  I know the ceiling of a few places here now.  I know the ceiling in Ultrasound.  I know the ceiling in Nuclear Medicine, and I know the ceiling in the Imaging rooms.

The technician came back in and prepared to goop me up.  "Can you move your hair all the way off your neck and behind your head?  That's a great haircut by the way, where do you get it done?"

The Jennifer Aniston wig gets em every time.

"It's a wig.  I don't have hair.  I'm a chemo patient..." and I proceed to tell her about being a blond and my three new alter egos.

"Wow, you look great.  Do you mind me asking, what kind of cancer?"

"Breast cancer."

"Did you find it yourself, or on a mammogram."

I told her about Flopsy, and the slight hardness in her, and pucker near my nipple.

She continued the ultrasound, squeezing more and more goop on my arm, and into my arm pit, and up towards my neck.  She waved her wand around and around, and occasionally I heard a click, she was taking a picture.  Oh geez, what's she taking a picture of?  I was in there for awhile, it was hard for her to get what she needed since my PICC and bandage were in the way.

"Did they ask you to wait, or go home after this?"

Uh oh.

She took a few more pictures and then I was done.  I walked out of the hospital, trying to remember how many times had I walked through these automatic doors with a little wrist band identifying me.

I headed over to the Cancer Center, right around the corner, to remind Vonda about copying my chart, and check with Kitty about what time will I do chemo on Friday, since my plastic surgeon appointment is in the morning.  I saw Kitty first, told her about the whole ultrasound thing, and she said as soon as they called her, she'd give me a call.  She had me down for 1:30 p.m. on Friday instead of my usual 9 a.m.  "I remembered to change the calendar" she smiled.

Vonda was in the medicine room, and she was surprised to see me.  "Just wanted to remind you about copying my chart and all..."

"Oh yeah" she remembered.  We talked a bit, and agreed I'd come at the end of the day tomorrow.  Vonda?  Hope everything went ok with the rest of your day.  Hug.

I came home, dogged tired.  You'd a thunk I hadn't slept in days, I was exhausted.  I made a tuna sandwich with sprouts and then took a nap.  I notice I don't seem to be as resilient these days to the glitches or possible glitches.  They really get to me.  I get all in my head and anxious and then I get really really sleepy.

Almost at the end of her day, Kitty called and said they had the report back.  Now don't quote me here, cause I didn't understand all of it but she tried to dumb it down for me.  Bottom line?  No blockage on my PICC, but some thrombosis in another vein close to where my PICC line is.  Not a clot or blockage, but like some debris floating in my veins which was probably causing the swelling, maybe in my lymphatic system too.  We would just keep an eye on it.

"How do we do that?"

She explained if the pain or swelling increased.  She recommend I go really easy on the arm, keep it elevated and it should get better.  Both she and Wayne remarked there's been a lot of upset and trauma on the right side with the two ports and then the PICC being put in.  Hopefully this is all just part of the healing process for me.  Everybody's different, but some people are really sensitive to having things put in their body.  If something happens, we will deal with it, try not to worry.

So there you have it.  My arm still really hurts.  It is still slightly swollen.  My shoulder hurts too.  I sure hope this gets better cause I don't know if I could stand this for another 7 weeks.  I really don't think I could.

Robin had to go to bed early tonight.  Tomorrow is the first day of school.  My baby is now an 8th grader, with a full set of braces, and man size bravery.  "Mom, will you list all the stuff again you said I'd need, and I'll get my backpack and do the check?"

I rattled things off, while he said "check.  check.  check."

He patted my head and hugged me goodnight, and I took a big sniff of freshly showered 8th grader.

Not long after, Batman called.  He was leaving work after his first night back after being on tour.  Just like he always does, he calls me on my cell to ask "What's for dinner?"  Not long after, he was walking through the front door, received a happy dog greeting, and reheated ravioli with pesto.

Life goes on.  Thank God for my sacred ordinary.

and for friends in high places.

Monday, August 16, 2010

My Cup Runneth Over, and Can You Say Venogram?


Shout out to Husband for coming up with this title when I mentioned the subject matter of this post.

Did you know that on October 21, 1998, the Women's Health and Cancer Rights Act was passed making it a Federal law requiring most group insurance plans that cover mastectomy to also cover breast reconstruction?

I've started to think about what cup size I'd like to be when Flopsy is retired.  Mopsy will get a matching outfit, or will possibly be retired herself.  It's surreal to think about, but I know I need to start entertaining the idea.  Entertaining with much smaller boobies.   In the cancer world, they call em "foobs" for fake boobs.

Most of my adult life I've been a DD.  Way too big.

You think it's been easy carrying these fat bunnies around?

I got my first training bra in 4th grade, when I became self conscious about two emerging bumps from underneath my sweater.  I was probably a C cup by 6th grade.  By my twenties, I was a DD, and when I was pregnant with the boys, spilled out of that.

Now I have a chance for a do over.  That's how I'm trying to re-frame it.  I'd like something not too big, not too small, just right, Goldilocks says.  A nice handful, but perky enough to wear a halter or a racerback shirt.

I've been looking at "after" photos of breast reconstruction.  I've learned that plastic surgeons don't think in terms of cup size.  They use "cc's" or cubic centimeters, and think in terms of volume.  Implant sizes range from 120 cc's to 850 cc's.  I will be interested to find out how they measure size when the breasts are constructed using tissue from the patient's body.

I am really looking forward to my appointment with the plastic surgeon on Friday.  I know there will be a lot to tell you about after that meeting.

I had a bit of the Monday blues today after my appointment with surgeon this morning to check my port hole :)

He said it is healing just fine, the bottom of the hole is much shallower, and the sides will begin to close as the bottom rises.  I told him the skin near the area has been very itchy and tight, and he said this is a sign of healing.  He is not having me put anything on the wound at all, just packing it with fresh gauze every day and a large bandaid on top of that.  He said this week will probably bring more itching and pulling, but the week after I should really notice a difference in how the wound looks and feels.

Over the weekend, my right arm was still very tender and yesterday I was concerned about some numbing in that arm.  I also thought the right arm and hand look slightly swollen.  I mentioned this to him, and although he did not put in my PICC line, he wanted to make sure everything is ok.

He said it's possible this is just part of the normal healing after having the port removed and t the PICC inserted, but I could have a collapsed vein or clot that is causing the numbing and swelling.  He was leaving on vacation this afternoon, but wanted to order me a venogram at the hospital, and then have the results sent to my oncologist.

I just about crumbled on the exam table, not another damn poke.  Ok Doc, what's a venogram?

He said it is a procedure done at hospital radiology (Hello Wayne) where they will inject dye into my arm and then X-ray it to make sure the blood flow is good through the veins and there are no blockages or clots.

I was crushed.  He said his office would refer me and I would hear back from the hospital today or tomorrow when the procedure would be scheduled.

I sure am getting tired of biting my lip and choking back tears on the way home from surgeon's office.

I did not hear from the hospital today, but at the end of the day, his staff called to say they were still trying to make arrangements.  The hospital did not have available spots till the end of the week, but they were trying to get me in sooner.  She would talk to them again in the morning and let me know.

Oh baby.  I sure could spit with all this poking and invasion of my poor veins.  Chemo can't end soon enough for me.  Seven weeks to go baby.  Seven weeks.

What happened to my smooth sail?

Deep breath.

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