Friday, January 27, 2012

The Fifty Year Itch



It is the first taste of summer, the first Friday of June, when the sun and wind are in perfect tune. It is the eve of my 50th birthday and the start of our 50th year in business. We are together again, just as we often are. My father sits on the front porch of our office in his classic white, high-backed rocking chair, too afraid to rock, and I stand beside him, too uncomfortable to sit. The depth of our conversations is narrowing.
He wants to talk shop and I want him to realize just how fortunate he is. How, at the age of 84, his ailments are minuscule compared to his quick sinking circle of friends.  He clings to his independence - his stubborn, thick Irish temperament - while I patiently wait for him to need me just as I have always needed him.  I wait for his Parkinson’s disease to slow him down enough for us to get to know each other.  I want to understand what fuels him, what haunts him, and what his regrets are.
“I started this business the year you were born,” he boasts.
“Yes, I know Dad.” I put my hand on his shoulder and he bristles, then shoots me a disapproving glare. My father does not like being touched.  I have no memory of him reaching out to me, holding my hand or wrapping his arms around me.  Lifting me up into a limitless sky the way Daddy’s often do.  Twirling me around and around.  Smiling, just for me.  Believing in me.
To avoid his sign of disapproval, I turn and look away.  I look across the street, past the towering juniper tree that guards the unpretentious two-family house that my father bought back in the early 80’s. He lives here now, in the first floor apartment, because he can no longer climb stairs. This is the same house I raised my son, Kerry, in and where he would return, years later, to raise his son. 
I look across the street, to the same two-family house where, 7 years ago, I found my son.  Lifeless. 
I look past the roofline, the green-shingled roofline.  I look past the chimney top and tips of neighboring homes.  I look past the limitless sky - upward, onward, closer to my son. I look for clarity, conviction, and guidance.
“Fifty years, fifty YEARS” my father groans, “Where did the time go.”
He founded Kennedy Security Services long before there was such a thing as no-fault divorce. With a cocked camera, pencil and pad at his side, he spent years shadowing adulterers – trailing unsuspecting husbands and less-than-perfect wives.  Primed in high school  as  a track and football star, he carried his competitive nature with him. He drank and ate more than his share - balancing it all with a plethora of women.
He ran with the best of them: affluent lawyers, doctors, politicians and businessmen. He was free spirited, gregarious and fun -- a welcome relief from the stiff shirts his white-collar friends encountered on a regular basis.
When they offered him a referral he took it. When they opened a door he walked swiftly through it. When they spoke of impending change, he listened. Hard.
“Dad, what made you want to start a security company?” I ask.
He laughs.
“Dad, why security? Why not be a cop?”
He laughs harder.
I push harder.
“Dad, tell me what to tell your grandchildren and your great grandchildren.  Tell me what motivated you, what made you who you are.  Tell me why you never stopped. Tell me why you were always such a hard ass!”
I pushed too hard.  His eyes point downward, his head slumps forward, his mouth opens and he sighs.  Two deep breaths later, he is fast asleep.

By the mid 60’s Greenwich, Connecticut, catapulted from a quaint, coastal New England community, into a city overflowing with opulence and opportunity. To match the demographics, he restructured the company into a full-scale, private security agency specializing in uniformed guard services for high-profile corporations, grand scaled events, and lavish homes.
But Greenwich is not where I grew up.  My parents divorced when I was two years old; I have no memory of them being together.
When I asked my mother why, she’d tell me that my father had an explosive temper, that he was loud, impatient, and uncouth, and that us kids made him nervous.
She told us about the time he came home early, and angry, and how my sister Colleen climbed into the attic to escape his fury -- screaming that ants were crawling all over her, when there were no ants in sight.
We left Greenwich in the dead of night. Mom packed everything she wanted, including a parakeet and us two kids, into a 1960’s Studebaker she nicknamed Betsy, and we headed to a small town in northeastern Pennsylvania.
Surrounded in rural simplicity, we settled into an old country farmhouse on a dead end street that butted up to a wooded hill we kids called Snake Mountain.  Our yard included overgrown apple trees and a badly weathered barn with an attached, two-car garage.
A few blocks away lived Mom’s aunt and uncle, both of her brothers, their happily married wives, and a brood of cousins.  Their cohesive welcoming added calmness to our disjointed lives. But despite their efforts, it was obvious that our family was not intact. And I, the only one with dark hair, stood out as a constant reminder of my father. 
“If you wrap a towel around their head you can’t tell them apart,” my mother would say when asked which one of us kids was Colleen and which was Shannon. “They’re only 15 months apart - practically Irish twins.”
The only other one with hair my shade was Aunt Pauline and Uncle Zibe’s forever roaming mutt, a rat terrier mix that folks called by his full name, Blacky Martin. Blacky Martin was known for breaking into people’s houses and impregnating their purebreds. Every dog in the neighborhood looked a little bit like him and, like me, he was fiercely independent, stubborn, and unruly. 
I remember passing Blacky Martin as I wandered down the hill to an old feed store in the center of town. In the back was a large barn where they stored bundles of hay. They would stack them one on top of the other, creating mounds of soft cushion, perfect for jumping. I would leap from one bail to the next. Sometimes I’d jump so high, I was convinced I could fly. Everything about this place made me happy.
Occasionally I would steel salt licks and handfuls of hay -- things I would need to feed the pony I was determined to get. I even had a name for him: Chester.
After receiving a satisfactory report card, I dialed my father, stretched the cord of our harvest-gold wall-mounted kitchen phone to the far end corner of our pantry, cupped the receiver with both hands so no one could hear me, and begged for my faithful foal.
I didn’t know much, but I knew I was my father’s favorite. I was his “Black Irish,” and my pleading was impossible to resist. My father’s YES was no sooner celebrated than it was squished. 
“Absolutely NOT,” yelled Mother.  If it were not for her, I believed, I’d have had everything I wanted – a pony and a father. 
Mother may have been the boss of me, but she could not control me.  I was, and still am, a dreamer.  My dreams would take me anywhere I wanted to go. In the world of my imagination, I spent my days riding Chester across golden wheat fields that blanketed the crest of Snake Mountain.  Then, I would sneak him down densely wooded, serpentine trails, and into our barn in the dead of night. I’d feed him apples; watch his long, scratchy tongue lap the salt licks. I brushed his sleek, dark, mane. Chester was my favorite thing in the world, next to my father.
All was well until I started telling the kids at school about Chester.
Camille was new to the neighborhood.  She moved to Shavertown, Pennsylvania from Connecticut - the same state my father lived in. Her clothes were cooler than mine. Her house was newer and neater than mine. I wanted her to like me, so I invited her over for a ride on Chester.
Standing inside our dilapidated barn, I explained, “Chester’s not here right now, but this is his stall, he sleeps here.  And this is his hay, and these are his salt lick. He really likes his salt lick.”
“Where did he go?” she asked.
“He’s off gallivanting,” I told her.
Gallivanting is a term my mother used often when she spoke of my father, and it sounded like so much fun to me.
Sometimes, when I missed my father the most, I’d sneak out of my bedroom, down our slippery, uncarpeted staircase, out the back door and into the barn. There, snuggled in ever-growing mounds of hay, I’d drift off to sleep.
“Wake up Dad,” I shout.  I put my hand back on his shoulder and a shake him, gently at first.  When he does not stir I shake him harder. “Wake up old man,” I demand.
He hates being thought of as an “old man” and I am pleased to know that I can still get under his skin. 
He blinks twice and then bounces right back into his favorite topic – the good old days.
 “Our office used to be on Greenwich Avenue. Right where the Ralph Lauren store is going,” he reminds me. “They picked it up and moved it here back in the 50’s.”  
In the late 70s, my father moved his understated office above a string of trendy shops on West Putnam Avenue into a house owned by the family of a close friend - a local lawyer who went on to become the first selectman of Greenwich. The even side of the street is business zoned, allowing him to transform this colonial revival into a comfortable work and living space.
“Will you look at that,” he says as he points to the ornate black iron railing wrapped around the second tier balcony of our newly constructed neighbor. – a 5300 square foot, federalist-styled brick town house stuffed into a ¼ acre lot. It’s perimeter brick wall butts exactly 8 feet from our foundation.  “THAT is gaudy!” he adds.
It’s “urban sophistication,” I tell him.
“Well, I think its shit,” he contends.
Because we are located in the heart of downtown Greenwich, 40 minutes outside of New York City and within walking distance to the train and Long Island Sound, our address is in high demand.
 “No need for a car,” my father will tell you. School, library, church, grocery store, drug store, restaurants and boutiques - everything is in close range.
You’ll hear the locals complain a lot about how much the town has changed yet its upscale essence remains. A community infused with wealth, culture, and charm. A population of 60,000 thrive here along with one hundred of Connecticut’s largest corporations. Museums, a symphony, polo grounds, and marinas interlace with 8,000 acres of protected land - including 32 miles of coast, 20 parks, four beaches and a municipal golf course.
“They should have NEVER made the Avenue one way,” growls my father, “and you can’t get a decent hot dog, let alone a burger now that Finch’s is out of business.”
My father wore many hats before he struck it big. One of his favorites was “soda jerk” at the food counter in Finch’s Drug Store. It’s been 20 years since Mom and Pop stores ran the Avenue, trampled by trendy trademarks such as, Kate Spade, Baccarat, Tumi, and Tiffany. If it’s a $5,000 vase you’re looking for I can easily point you in the right directions these days, but nowhere can you find a needle and thread.
The average net worth per person is 430 thousand, the typical home costs an estimated 2.4 million, and the combined real estate value exceeds 50 billion. Dubbed the “Hedge-fund Capital of the World,” it is easy to see why the affluent flock here.
“You can work three jobs if you want,” he’ll tell you, “You’ll never go hungry here.” This is his way of keeping us grounded.
“Dad, what made you come to the office the day Kerry died?” I ask.
It was Memorial Day, my father was celebrating the beginning of summer over dinner with friends when he sensed an urgency to go to the office. He walked in not knowing what he would find just as I did not know what I would find when I walked into my son’s house, 30 minutes earlier.  But unlike my father, I had no hint of the devastation that hid behind the door.
“I don’t know Shannon. I couldn’t eat, my stomach hurt. I knew something was wrong.”
My father has always been instinctually aware of looming work related problems but I had never witnessed this on a personal level.
After discovering my son’s cold gray, lifeless body in the two-family home where he lived, his eyes locked open and upward, I fled in horror and in disbelieve.  I ran down the stairs and out the front door. I ran past the towering juniper tree, across the street, and back to our office.  I ran without looking.  I ran hoping oncoming traffic would hit me, and kill me, so that I could follow my son. 
I reached the office in a panic, grabbed the phone off my fathers desk and collapsed on the floor, in a fetal position, where I rocked and screamed for a very long time. I wanted my father, I needed my father, but I could not dial the phone. I could not focus through my tears.  I could not form words. I could not comprehend a world without my son.
My screaming triggered an involuntary reflex of urination. My skirt was wet, the carpet beside my fathers desk was wet.  My screaming also caused a bulge, a hernia, to form in the pit of my stomach, just below my ribcage. I would moan and massage this mass for days, months and years following Kerry’s death.  I reach for it still. 
A neighbor heard my cry and called the police.  Two squad cars arrived at the same time as my father.  “I killed my son” were the only words I could speak. 
“He was mad at me when he died, Dad” I remind him.
The last thing I said to my son was “get your act together” and this outraged him.  Less than an hour later, he was dead.
“It’s not your fault,” my father reminds me. 
“Today, I know that’s true Dad.  But back then I blamed myself just as I blamed you. I pushed him hard, just as you pushed me.”
Guilt, blame and shame is what I wore when I began my journey through grief.  I search hard and long for answers. I search in places I never thought I’d go. Today, 7 years into my journey and 50 years into my life, I realize that Kerry’s death has taught me many things, mainly how to live. 

Thursday, January 26, 2012

Table Manners

When I'm not crying, I'm writing - emails, texts, facebook, posts on the Breast Cancer discussion groups. But my writing is not flowing. It is choppy. It is all over the place.  Even so, I'm going to post it.  I can tweak it later when life becomes simple again. It will get simple again.  It will.





I am awake. The room is dark. My laptop is downstairs. My cell phone is downstairs. I am upstairs in the cats room.

I have made a deal with myself - do NOT, under any circumstances, look at the clock.  Do NOT go downstairs.  Do NOT check your email.  Do NOT engage your mind.

I lie on my back and straighten my body - I am like a corpse in a coffin.

I relax my body. I breath deeply. I talk to Kerry. Please help me Kerry.  Please help me to sleep.

I close my eyes and the nightmares rush in...

I am in the operating room.  A nurse hands me a soft, malleable, mass and tells me to swallow it.  I put it in my mouth, but its too big to swallow.  I try to chew it but it is rubbery and tart.  "What is it" I ask. "It's your heart" she says.  I spit it out.  I hold it in my hand.  It is beating. Strong.  

I wake up screaming.

My hearing has become doglike.  It's more than just being sensitive to noise, I am hearing sounds from the condo below me - three stories below.  We have cement walls and floors and ceilings.  The people below are old and gentle toned.

I hear their phone ring.  I hear their laughter.  I hear their microwave beep, beep, beeping.  I want to yell, "you're food is ready!" but I know they can not hear me.  They are three stories below.

At first, I thought I was losing my mind.  A friend (and lucky for me, a therapist) tells me this is not uncommon for people who are in a depressed state, such as me.  I was worried I would need to be institutionalized. Okay, for a moment there, I was looking forward to being institutionalized. What a nice break that would be.

It is almost 2:00 am.

My father is dying.

We are all dying.

My husband is in our bed and I am in the cats room. It is quieter here.

My eyes are tired but my mind is awake.

I saw the squabbit today - a black, half squirrel, half rabbit.  You say squirrel without a tail, but Jackson and I say squabbit.

He was scurrying across the road, a bit too carelessly. Carefree and bouncy be.

I am happy he is alive. I thought for sure he was dead. I thought the hawk got him.  The same hawk that mistook Miss Lucy - my five pound pup - as prey.  In the middle of the day.  Right outside my office window. While I was only a few feet away.

That hawk swooped and I screamed.  I screamed the hawk away.

That squabbit made me smile!  I saw him right before I picked up Jackson. Jackson and I have resumed our Wednesday morning ritual of breakfast, at the diner, before school.

That squabbit gave me the "what's new" answer that Jackson asks for when he greets me. "What's new Nanny?" is always the second thing he says.  He begins with a bright, beaming, "HI!!!"

"I saw the squabbit!" is so much better than catstir, or yet another biopsy, or any of the other new things that swirl around me.

In the booth in front of me are two business men dressed in freshly pressed suits, crisp white shirts, bright ties and polished shoes.  They talk about their jobs - about profits and loss, about sales tactics and trends.  They both order egg white omelets and whole wheat toast - no butter. One adds spinach, the other adds onions and tomatoes.  "Got to look after my health," says the one. "My wife is the healthiest person I know," says the other.  I hate these business men.

Chocolate chip pancakes are Jackson's favorite.  He had three today.  Along with bacon and a tall glass of "white" milk.

"What have I taught you?" I asked Jackson.

"Most of my table manners." he said.

"Anything else?"

"Umm.. nothing I can think of."

I need to teach Jackson more things.

I need to prepare my fathers eulogy.

I need to find his safety deposit key.

I need to take care of me.





Monday, January 23, 2012

The "Good Breast"



This is a quick update. I must rest. But I wanted you all to know that a lot of things happened today that made me laugh. But I will save those silly things for another day.

Today, the good doctor at Sloan Kettering Hospital in NYC (the catstir experts), told me that she disagrees with the Greenwich Hospital radiologists findings on my mammogram.

Yes, I have catstir in my right breast, but my left breast, the "good breast," the one labeled "no suspicious findings" by a doctor associated with Greenwich Hospital, is, in fact, suspicious.

DID NOT SEE THAT COMING RIGHT?  Neither did I!

So I had yet another mammogram done on my "good breast" and because her suspicions were confirmed, I am scheduled for a biopsy at 9:00 am tomorrow morning.

There is no messing around at Sloan Kettering. I like that.

My good doctor at Sloan Kettering also informed me that when the doctor at Greenwich Hospital did the biopsy on my right breast (hereby labeled the catstir breast), she put the metal clip - the clip that marks the catstir site - in the wrong spot.

SHE PUT THE MARKER THAT MARKS THE CATSTIR IN THE WRONG SPOT.

This is why you go for second opinions.

Now, I have fight in me. This is exactly what I needed. YOU made a mistake Greenwich Hospital Dr!  It's no longer about me wearing an underwire bra's, or me being an asshole, or me doing this when I should have been doing that... For today, this was about YOU misreading a mammogram and miss placing a clip that would mark my catstir spot.

The palatial ambiance of Greenwich Hospital - the marble floors, the giant fish tank, the baby grand piano - all that is nice, but I want to know I'm receiving the best possible care.  I listened to my gut and I was right.

Thats one giant leap for MOnkey!!!

xoMonkeyME

P.S.  As far as dumb-ass comments go... cross off, "At least you only have catstir in one breast!"




Sunday, January 22, 2012

Crazy CATstir Lady




Dear Blogging Community, Monkey Lovers, Freaks, Followers, Fellow Catstir Comrades,

Because you can't keep a good monkey down, I am launching a new business venture. I am selling Crazy Cat Lady Starter Kits at a remarkable price of only $24.95 (plus shipping and handling).

Now YOU can be a crazy cat lady too!

Don't make me do the math, you all know how much I despise math, but that is less than $4.15 per kitten.  What a deal!

These kittens are guaranteed to have blue eyes for the first 8 weeks of their lives AND... they all have tails.  Well, the little one in the back, the one crouched down, his tail is shorter than the rest but please don't hold that against him.  He's got a great personality.

Did I make you smile?  I hope so.  You have each given me so much this past week - Joy, Hope, Love, Compassion and remarkably, not one of you gave me pity - the one thing I don't need (besides catstir).

I could not have gotten out of bed today if it were not for YOU.

YES, it took me a long time to get out of bed (4:20 pm) but I did it.  AND, I took a shower and changed out of my PJ's.

True, the clothes I put on look a lot like PJ's but they are NOT.  Sweat pants and baggy shirt is one small step above floppy, flannel jammies.

And... I'm sitting by the fire, in the living room, sipping wine, and laughing at myself.

Tomorrow is a big day. Tomorrow is my first trip to Sloan Kettering hospital.  Tomorrow I get to hear someone talk about my catstir other than me.

I want to keep you all informed but I don't want to freak you out. Promise me you won't freak out. Stay calm, I'll be fine. I've got all of you by my side.

xoxoMonkeyME



Saturday, January 21, 2012

WARNING - THIS CAT MIGHT CAUSE CATSTIR




CATSTIR[kat-stur]noun: Code word for the other "C" word that rhymes with Dancer


I wake at 4:00 am and watch the first flecks of snow touch ground. Everything is peaceful and calm until the sun begins to rise and the nightmares return. I close my eyes and they roll right in...

A buxom blond nurse in stiletto heels, with ruby red lips and bouffant hair is feeding me, intravenously - a concoction of florescent green toxins. In the bed beside me is the frail old man that shared my fathers room during his brief stay at the nursing home last year.  "THIS is the waiting place," he tells me. "This is where we wait to die."


What do you think THAT means?  No sushi and porn before bed?

And what do you think caused my catstir? I now question everything I ever did.

I smoked cigarettes during my 20's. I had plenty of bad perms during the 80's.

Other then that, I lived a well balanced life. I have always exercised. I taught aerobics in my 20's. I was a distance runner during my 30's and 40's. I stopped running the day my son died. I meditate, I visualize, I balance my chakra's - regularly.

SO, what caused my catstir?  I now question everything that surrounds me...

My laptop, especially when it heats up.
My cell phone. I no longer want to hold it. Even placing it on my night-stand is too close.
Every plastic bottle of water I drink from feels like a steady stream of catstir infiltrating my body.
I won't go near the microwave. I'm convinced it's shooting catstir waves at me.
Should I wear a face mask when I pump gas?
What about the mercury in fish?

For now, I trust the rich, smooth blend of coffee, but I suspect those little packets of blue, the artificial sweetener that I used for so many years, might be deadly. Or maybe I ate too much red liquorish, tainted with red dye #2.

I don't trust the water rushing from my faucet - never have.  Now, I don't even want to brush my teeth with it.

If it's not organic, I'm not eating it. And I'm avoiding genetically altered foods as if it is the plague.

I don't care if the "wheat scoop" cat litter is not as effective as the super absorbing catstir causing kind.

What about my office? Is there asbestos hiding here? I am the third "office worker" to get breast catstir.

The first was Bertha, she was our bookkeeper for over 20 years. She died of breast catstir a few years back. I spoke at her funeral.

The second was my fathers secretary Lisa, who worked for our company for 20+ years. My father hired her straight out of high school and she ran the office like a well oiled machine. She was diagnosed last year. She is a year older then I am.

I can't get over how quickly the gray came.  It spread across the top of my head like a peacocks plume.  To counteract this, I made an appointment with a colorist and then cancelled.  Thinking - why am I wasting money getting my hair dyed if it's going to fall out.


I have to get a new profile picture. That cowboy hat of mine is nauseating.  I now HATE the color pink. Even my dear friend "Pinky" has agreed to change her name to "Inky" - isn't that sweet!

What are the odds that this catstir I caught will teach me how to spell?

Wisdom - I'm beginning to hear it.

Katie Gates said, "Peoples advice is more about them then you."  So true, so true.

Miss Claudia tried to warn me, "I love you Miss Shannon but please wait 24 hours before you post something in anger." I know, I know... I'll try, but I'm so damn compulsive.

A fellow catstir friend said, "You will feel calmer once your treatment plan is in place - you'll feel more in control."

Is it obvious that I'm a control freak?  Yes, of course it is.

I forgot to tell you that I am the only one allowed to spew venom at my husband. Please do not bash him. He really is a good guy and besides, I love him.  He is coping the best he can. That is all I ask for.  If he must go, I will respect that. 

I will close by stating the obvious ...

Thank you. Thank you all so much for being there. For doing what you can to ease my pain.  I am way behind in email replies, but know that I appreciate every kind word, every prayer and every piece of advice - even if it's annoying and I choose not to listen.


xoMonkeyME



Today, 2pac guides me, "...its going to take the (wo)man in me, to conquer all this insanity"
Thank you Sweet Lindsay, for your never ending wisdom and sensibility.

Thursday, January 19, 2012

HOW TO TREAT YOUR DCIS


Ductal Carcinoma In Situ 


A list of considerations from Breastcancer.org author Beesie: 

  • Do you want to avoid radiation? If your DCIS isn't near the chest wall, then it may be possible to avoid radiation if you have a mastectomy. This is a big selling point for many women who choose to have mastectomies. However you should be aware that there is no guarantee that radiation may not be necessary even if you have a mastectomy, if some DCIS is found near the chest wall. Radiation might also be recommended if it turns out that you have a large area of invasive cancer in addition to the DCIS and/or if it turns out that you are node positive (which is only possible if you have invasive cancer).
  • Do you want to avoid Tamoxifen? For those who are ER positive who have DCIS, this may be possible if you have a mastectomy and particularly if you have a bilateral mastectomy. Tamoxifen provides 3 benefits: 1) It reduces the risk of local recurrence; 2) it reduces the risk of the development of a new breast cancer in either breast; and 3) it reduces the risk of a distant recurrence. For most women, a mastectomy will reduce the first risk to a low enough level that the benefit from Tamox will be minimal. For most women, a bilateral mastectomy will reduce the second risk to a low enough level that the benefit from Tamox will be minimal. The third benefit, protection against a distant recurrence (i.e. mets), isn’t a factor for women who have DCIS, since by definition DCIS cannot move beyond the breast.  However for those who have invasive cancer, this is a crucial benefit and is not affected at all by the type of surgery. So if you have an invasive tumor that is ER+, usually Tamoxifen (or an AI) will be recommended whether you have a lumpectomy, mastectomy or a BMX. However if you have DCIS (and therefore face virtually no risk of mets) or a very small non-aggressive invasive tumor (and therefore face only a very small risk of mets), it may be possible to pass on Tamox with little change in your long-term prognosis.
  • Does the length of the surgery and the length of the recovery period matter to you? For most women, a lumpectomy is a relatively easy surgery and recovery. After a lumpectomy, radiation usually is given for 6 weeks. A mastectomy is a longer, more complex surgery and the recovery period is longer. How do you feel about going through a longer surgery and a longer, more restricted recovery period?
  • If you have a lumpectomy, how will you deal with the side effects from Rads?  For most patients the side effects of rads are not as difficult as they expected, but most women do experience some side effects. You should be prepared for some temporary discomfort, fatigue and skin irritation, particularly towards the end of your rads cycle. Most side effects go away a few weeks after treatment ends but if you have other health problems, particularly heart or lung problems, you may be at risk for more serious side effects. This can be an important consideration and should be discussed with your doctor. 
  • If you have a mastectomy, do you plan to have reconstruction? If so, be aware that reconstruction, even "immediate" reconstruction, is usually a long process - many months - and most often requires more than one surgery. Some women have little discomfort during the reconstruction process but other women find the process to be very difficult - there is no way to know until you are going through it. Are you prepared for this?
  • If you have a MX or BMX, how will you deal with possible complications with reconstruction? Some lucky women breeze through reconstruction but unfortunately, many have complications. These may be short-term and/or fixable or they may be long-term and difficult to fix. Common problems include ripples and indentations and unevenness. You may have lingering side effects (muscle pain, spasms, itching, etc.) on one side or both. If you don't end up with symmetry (symmetry is not a sure thing by any means, even if you have a bilateral mastectomy with reconstruction done on both sides at the same time), will you regret the decision to remove your breasts or your healthy breast? Are you prepared for the possibility of revision surgery?
  • If you have MX or BMX, how you do feel about your body image and how will this be affected by a mastectomy? A reconstructed breast is not the same as a real breast. Some women love their reconstructed breasts while some women hate them.  Most probably fall in-between. Reconstructed breasts usually looks fine in clothing but may not appear natural when naked. They may not feel natural or move naturally, particularly if you have implant reconstruction.  If you do choose to have a mastectomy, one option that will help you get a more natural appearance is a nipple sparing mastectomy (NSM). Not all breast surgeons are trained to do NSMs so your surgeon might not present this option to you. Ask your surgeon about it if you are interested and if he/she doesn’t do nipple sparing mastectomies, it may be worth the effort to find a surgeon who does do NSMs in order to see if this option is available for you (your DCIS can’t be right up near the nipple).
  • If you have a MX or BMX, how do you feel about losing the natural feeling in your breast(s) and nipple(s)? Are your nipples important to you sexually? A mastectomy will change your body for the rest of your life and you have to be prepared for that. Keep in mind as well that even if you have a nipple sparing mastectomy, except in rare cases (and except with a new untested reconstruction procedure) the most feeling that can be retained in your nipples is about 20% - the nerves that affect 80% of nipple sensation are by necessity cut during the surgery and cannot be reconnected. Any breast/nipple feeling you regain will be surface feeling only (or phantom sensations, which are actually quite common and feel very real); there will be no feeling inside your breast, instead your breast will feel numb. For some, loss of breast/nipple sensation is a small price to pay; for others, it has a huge impact on their lives.
  • If you have a MX or BMX, how will you deal emotionally with the loss of your breast(s)?Some women are glad that their breast(s) is gone because it was the source of the cancer, but others become angry that cancer forced them to lose their breast(s). How do you think you will feel? Don't just consider how you feel now, as you are facing the breast cancer diagnosis, but try to think about how you will feel in a year and in a few years, once this diagnosis, and the fear, is well behind you.  Keep in mind as well that most women are pleased with their decision to have a mastectomy or bilateral when it's first done - they are relieved that the cancer is gone and the surgery is over and in most cases it wasn't nearly as bad as they feared. For women who are affected by the loss, the real impact usually doesn't hit until many months or even years later. That’s why trying to think ahead to a time when this diagnosis is long behind you is important.
  • If you have a MX or BMX, will removal of your breast(s) help you move on from having had cancer or will it hamper your ability to move on? Will you feel that the cancer is gone because your breast(s) is gone? Or will the loss of your breast(s) be a constant reminder that you had breast cancer?
  • If you have a lumpectomy, how will you deal emotionally with your 6 month or annual mammos and/or MRIs?  For the first year or two after diagnosis, most women get very stressed when they have to go for their screenings. The good news is that usually this fear fades over time. However some women choose to have a BMX in order to avoid the anxiety of these checks.
  • Do you know what your doctors estimate your recurrence risk will be if you have a lumpectomy and radiation? Is this risk level one that you can live with or one that scares you? Will you live in constant fear or will you be satisfied that you've reduced your risk sufficiently and not worry about it except when you have your 6 month or annual screenings? If you will always worry, then having a mastectomy might be a better option for you; many women get peace of mind by having a mastectomy.  Be aware however that while a mastectomy will likely significantly reduce your local (in the breast area) recurrence risk, a recurrence or the development of a new BC is still possible after a mastectomy.  Lots to consider.
  • Do you know your risk to get BC in your other (the non-cancer) breast? Is this a risk level that scares you? Or is this a risk level that you can live with? Keep in mind that DCIS cannot recur in the contralateral breast so your current diagnosis doesn't impact your other breast. However, anyone who's been diagnosed with BC one time is at higher risk to be diagnosed again and this may be compounded if you have other risk factors. Find out your risk level from your oncologist. When you talk to him or her, determine if BRCA genetic testing might be appropriate for you based on your family history of cancer and/or your age and/or your ethnicity (those of Ashkenazi Jewish descent are at higher risk). Those who are BRCA positive are very high risk to get BC and for many women, a positive BRCA test result is a compelling reason to have a bilateral mastectomy. On the other hand, for many women a negative BRCA test result helps with the decision to have a lumpectomy or single mastectomy rather than a bilateral. Talk to your oncologist. Don't assume that you know what your risk is; you may be surprised to find that it's much higher than you think, or much lower than you think (my risk was much less than I would ever have thought).
  • How will you feel if you have a lumpectomy or single MX and at some point in the future (maybe in 2 years or maybe in 30 years) you get BC again, either a recurrence in the same breast or a new BC in either breast? Will you regret your decision and wish that you'd had a bilateral mastectomy? Or will you be grateful for the extra time that you had with your breasts, knowing that you made the best decision at the time with the information that you had?
  • How will you feel if you have a bilateral mastectomy and no cancer or high risk conditions are found in the other breast? Will you question (either immediately or years in the future) why you made the decision to have the bilateral? Or will you be satisfied that you made the best decision with the information you had?
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Thank You For Encouraging My Joy of Writing

Thank You For Encouraging My Joy of Writing
greenmonkeytales@live.com

Shannon E. Kennedy

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Photo by Joan Harrison