GROWTH

"Yes, they're fake. The real ones tried to kill me!"

I saw that quote under a survivors bio, at breastcancer.org.  It made me laugh and laughter is good.

This morning, during coffee, I asked my husband if I had the dates right...

"I had my annual mammogram on December 29th and was told I needed a biopsy, you were laid off from your job on January 19th, I was diagnosed with cancer on January 20th, and my Dad died on January 29th - is that right?" I asked.

"Yes, and we had surgery on March 5th," he added.  When he speaks of my cancer, he says "we" and this has a calming effect on me. It tells me I am not alone.

I, we, have yet to properly mourn my fathers death or the loss of my breasts.  We are, however, grateful for the extended amount time spent together. My husband has attended all of my doctor appointments and has been a key component in my decision making process. His calm, logical side, balances my, fierce, emotional side.  

The whole breast cancer concept is mind boggling.  You wake up one morning and discover you have a life threatening illness.  It's hard to come to terms with because you don't feel sick, and in my case, I didn't have any tangible proof - no lump, no blood count gone ascu, no family history to justify it. All I had were these itty-bitty-teeny-tiny microcalcifications that appeared under high resolution film, on my annual mammogram. Three specks that looked quiet adorable at first glance.  

Once I discovered I had cancer, after my initial stunned stupid response wore off, I diligently set out to learn everything I could about the disease and the best way to go about fighting it. This included educating myself on genetics, drug therapy, chemotherapy, and radiation.  Once I felt I had the knowledge I needed to form an educated opinion, I focused on treating it, and learned there are many choices involved in treating cancer.

Once I decided how I wanted to treat my cancer, I set out to find a compassionate breast surgeon who respected my decisions. This is a critical step because your breast surgeon is the one who will remove your cancer. A mistake could cost you your life. I interviewed 4 breast surgeons before I found one that I had total confidence in. I chose, Dr. Alexander Heerdt and she was magnificent. She consistently treated me with dignity and respect. She listened and addressed all of my concerns. Thanks to her meticulous, and highly skilled efforts, I am able to say I am cancer free. 

After I picked my breast surgeon I needed to find a reconstructive surgeon who works with the breast surgeon. Their schedules have to mesh because the reconstructive surgeon steps in immediately following the removal of my breasts.

And then finally, I had to consider the hospital. What is their infection rate?  What primary surgery's take place there?

These three components have to fit together and all must be considered "in-network" on your insurance plan.

It's a daunting process to say the least.  And I must admit, my main focus was the cancer.  When it came to who would do my reconstruction, I lost steam.  I thought I was safe riding on the white coat tails of  the head reconstruction breast surgeon at Memorial Sloan Kettering. 

I would love to tell you that the opening "UNDER CONSTRUCTION" photo is me. But, sadly, it is not. This is me, 18 days after my bilateral (double) mastectomy...

Hidden beneath the row of stitches are "TE's" (tissue expanders) or what I like to refer to as deflated non-regulation sized basketballs. Notice the two small, round, bandaids above each incision? This is the port where they stuck the needle for my first "fill" of saline last Tuesday. They need to slowly fill these up but as you might notice, there is a problem.  They are not symmetrical and the upper chest section of my "lower side" has collapsed. My breast reconstructive surgeon told me not to worry, that they will "fix it" when they do the "exchange" (see how you're learning all the cancer jargon). But that didn't make sense to me so I went for a second, post-op, opinion. Besides being uneven, the lower expander is sitting on the lower lip of my ribcage.  I can't breath without pain.  It's not a horrible pain but its uncomfortable.  It feels like I bruised a rib (and maybe I did).

My second opinion confirmed my suspicion - my right TE is not set correctly and needs to come out.  Worse, my second opinion stated that the surgeon should have NEVER filled the expander because it was misplaced.

To make absolutely certain, I'm going for a third opinion on Monday. This will be interesting because it is a surgeon who is part of Memorial Sloan Kettering hospital and works with (under) the surgeon who placed my TE's. 

Somewhere between all the poking, prodding, smooching, scalping, and stitching, my breasts lost their dignity.  Which is why, I suppose, I have no problem showing you the various stages of my recovery. On top of all that, it is important for people to understand that "breast reconstruction" is NOT the same as a boob job. This is a comment I hear often, "lucky you, you're getting a boob job!"

Regarding my last post, titled BLAME, to me it was not a "woe is me" post - it was a mind opening, heart fueled, self evolving post.  And damn, it felt good to write it. 

As I often say, I don't sugar coat anything. Nothing on my blog is off limits. I have dissected everything and anyone who has had an effect (positive or negative) on my life. I have pissed off a lot of people.  So far, I still have the support of my husband, some family, and a growing group of friends.  All of you are attracted to one key component... PERSONAL GROWTH.  For me, that is what this journey here is all about.

So if you catch me bitching or blaming, it's okay.  It's just me working on the stuff I need to learn. And if a second surgery is warranted, it's okay. They'll get it right and I'll have more to write. 

One thing I will never be, is a victim. 

xoxo,MonkeyME 

"Have patience with all things, but chiefly have patience with yourself. Do not lose courage in considering your own imperfections but instantly set about remedying them -- every day begin the task anew." Saint Francis de Sales

If you, are someone you know, has been diagnosed with breast cancer, 

breastcancer.org is a wonderful resource.

BLAME

...part of the cure is to wish to be cured. SENECA

Today, I am stuck on blame. And, I realize this is a reoccurring theme in my life.

There are days when I blame entitlement, or impoverishment, or complacency.

There are days when I blame heredity or bureaucracy, or society.

There are days when I blame the weather.

There are dark days when I blame my husband, or a friend, or a family member.

But mostly, I blame myself.

Everything gets heavy when I bring blame home with me.  Roll in it.  Sleep with it.  Awake to it.

Today, I blame my neighbor.

My superficial, elitist neighbor, has taken it upon himself to install thick black netting along the top lip of our shared carport to prevent the birds from building their nests.

I love watching the birds. It is one of the simple joys in life. I listen to their song. I watch their flight. I watch them tend to their young.

I don't care if they crap on my car. I don't care if they swoop at my cat. They are protective, nurturing, territorial, creatures. They will strategically gather at high ground and then one by one, dive-bomb the cat until she runs for cover. They also do this to the dog, who is half the size of the cat, but she is too aloof to let them distract her from her walk, or a friendly face, or a sniff of this or that.

This morning, I watched blackbirds try to fight their way in. Watched them peck and push at the menacing mesh. With a tight flutter and beaks bound with nesting, they jabbed at the obstruction over and over again.

There is a ladder close by. I want to climb it. Take my hedge cutters and snip apart his pompous barricade. I am angry but am still healing and I am physically limited. And if I toss logic into it, I'm not certain my efforts would be effective. I am certain that my actions would cause friction. A close to home friction that would play out for days, and months and years to come.

Today and yesterday, I blame my reconstructive breast surgeon. A small man with a huge ego.  A dismissive, condescending, belittling man cloaked in clout and a vast accumulation of accolades.

I blame him for not reassuring me before or after my surgery. And when I questioned why he didn't inform me that it is not his practice to see his patient before or after surgery, he replied, rather sheepishly..."you didn't ask."  Oh how I loath that excuse.

I blame my smug, superhero, rockstardoc, for not placing my tissue expanders evenly, or correctly.  These deflated non-regulation size basketballs are cumbersome and annoying, especially now that I have begun the skin and muscle stretching "fill" process. Doesn't he realize how meticulous I am? How everything MUST be balanced, and straight, and even. And how difficult it is for me to view my lopsided self.

Healing is hard work. Healing is letting go the way we want to be and holding on to the beginnings of good intensions. Healing is not about competing with ourselves. It isn't something we gain or lose. It is a process.

Today, I am focused on the birds, because they are struggling.
Today, I am focused on myself, because I am struggling.

Today, above all else, I know, I must honor the struggle.

We habitually erect a barrier called blame that keeps us from communicating genuinely with others, and we fortify it with our concepts of who's right and who's wrong. We do that with the people who are closest to us and we do it with political systems, with all kinds of things that we don't like about our associates or our society.  It is a very common, ancient, well-perfected device for trying to feel better.  Blame others.  Blaming is a way to protect your heart, trying to protect what is soft and open and tender in yourself. Rather than own that pain, we scramble to find some comfortable ground.   Pema Chodron

CANCER FREE

Simply put... 

I am cancer free

Everyone...

yes YOU 

and YOU 

and YOU

YOU carried

YOU comforted

YOU caressed

YOU cradled

YOU empowered

YOU healed

You gave me the courage to do what I recognized in my gut, heart and head, needed to be done.

Thank you. 

I love you

I love you

I love you

Always, 

xoMonkeyME

“When love awakens in your life, in the night of your heart, it is like the dawn breaking within you. Where before there was anonymity, now there is intimacy; where before there was fear, now there is courage; where before in your life there was awkwardness, now there is a rhythm of grace and gracefulness; where before you used to be jagged, now you are elegant and in rhythm with your self. When love awakens in your life, it is like a rebirth, a new beginning. ” 

― John O'Donohue, Anam Cara: A Book of Celtic Wisdom

Pi and I

Today, the sun is strong and there is not a cloud to be found. I am on the deck, dressed in a wide brimmed hat and a loose fitting nightgown. It is more than just an unseasonably warm day, it is PI, a date that reflects an irrational number and corresponds with Albert Einstein and my husband's birthday.

This time last year we were numbed by images of Japans devastating Tsunami. The year before we were beaten by the wrath of a fierce nor-eastern storm. Hurricane strength winds toppled trees while a steady surge of rain caused town wide flooding. It was the worst recorded storm in Connecticut's history. 

But today, on this happy Pi day, I am focused on my healing.

Today... I feel as sleek as a salamander. I have always admired salamanders.

I remember how, as a young girl, I would spend endless hours in search of salamanders. They would hide in moist dirt shadowed by overgrown vegetation. I would focus on the bend and twist of tethered leaves - evidence of their scurry. I would dig for them with my bare hands. Dig deep below the surface. Dig past slugs and worms and disjointed roots.

I loved the look and feel of packed dirt beneath my nail beds. I still do.

I am thrilled with my new, sleek, salamander physic. Bra's, no longer a necessity, are an optional accessory.

I am that happy little girl again - frolicking in the simplicities of my youth.

Miss Pegged surprised me today with two flats of pansies that I bare-handedly and methodically intermingled with cascading shafts of ivy. Together they will flourish in the sun drenched copper planters that line our 5th floor balcony.

I ignore twinges of burning and tearing and throbbing, and instead, focus on the simple pleasures of digging into rich organic soil. Smiling as it, once again, nestles in my unpolished nail beds.

This greenery shields me from our neighbors across the river. It shields me like a salamander.  Here I can hide topless, or bottomless, or, I can simply rest.  Fully dressed.   

I am a far cry from the misery of last Saturday. Saturday was painful and pathetic.  Saturday was the day I read my post surgery instructions that included the 1-800-suicide hotline number.

I medicated myself all day Saturday and most of Sunday. Got high on valium and vicodin, hoping I'd wake just in time for Tuesday.  Tuesday (yesterday) was my first post-op doctors appointment.  Tuesday was the day they yanked the four drains that sank into the center and surrounding walls of my chest. Tuesday was the day I removed my surgical camisole and released the detachable mini jugs filled with sludge from the oozing wounds of my missing breasts.

Tuesday I was set free.

Today I enjoyed a super sleek me.

Tomorrow, I receive my full pathology report - a microscopic view of the dissection of three of my lymph nodes, both of my breasts, my nipples and my areola.  Even a section of "suspicious looking skin" from the under-fold of my right breast.  Tomorrow, I get a glimpse of what my future holds.

xo, MOnkeyME

I have no special talent. I am only passionately curious.  Albert Einstein

Cat in a Cage

I've got nothing clever or profound to say but I want you to know that my internet is very slow. Either that or I am very slow.

The song, What's new Pussycat is stuck in my head. It's better then We at the Pizza Hut, which, thanks to Jay was stuck in my head for over two weeks, but still, that Pussycat is stuck there.  In my head.

I want to go OUT just as the cat and the dog want to go OUT, but I don't know what I'd do if I went OUT and besides, I've got these four obnoxious drains that resemble mini milk jugs, dangling from the bottom of a surgical camisole.  If I walk on all fours and moo I look like a cow with sagging teats. (I need to stop eating cow). They fill up with gunk that oozes from my chest.  I used to pretend the gunk looked like a french martini but now its more pineapplie and it's disgusting.  Maybe if I bedazzle the drains - make little socks to slip over them so you can't see whats in them, but I don't have the energy for that so I guess I'll just stay here in my bed.

I don't need the painkillers. What I'm feeling is more annoying then painful (except for the shots of pain that sneak up out of nowhere or the burning sensation that spreads across my chest and makes me think I caught myself on fire because I know what that feels like).  The only reason I take a painkiller is if I want to sleep and most of the time that is all I want to do.  The painkiller does give you a nice buzz, but still... nothing beats a glass of wine.  So most often, I opt for a sip of wine and a splash of pain over numb to the point where I don't know if I have toes.

Besides, there's nothing wrong with feeling things.

The cat is meowing.  She wants to go OUT. Please stop meowing cat! YES, I want to go OUT too but you don't hear me meowing.  Or maybe you do.

I'm alone for the first time since my surgery.  Mark went OUT.  Part of me wants to do something bad, like eat a bag of potato chips and wash them down with a stick of butter and a bottle of rootbeer.  But I don't have an appetite. I want to watch whatever it is that I want to watch, only noise of any kind annoys me.

I'd call someone but I don't have the energy to talk and everyone's voice annoys me, except for Mark's voice because he's very quiet and he barely talks.  Remind me not to complain about that when I get better.

It's daylight savings this weekend and I am super excited about it! To me, this means one less hour with my drains.  One less hour before I get my pathology report.

The phone is ringing, I hate the sound of the phone ringing and NO I'm not going to answer YOU. Please don't leave a message.  I hate the beep beep beep sound of the answering machine, warning me that I have a message.


I might be suffering from TMA (too much attention). This doesn't mean you should stop reading me, or telling me how wonderful I am, but I am starting to feel undeserving of all the cards, flowers, gifts, food, etc.  I need to thank you all personally. Each gift lifts my spirits but I'll need to do that on my own one day and today, I have no idea how I'm going to do that.

Oh my god, my phone is ringing AGAIN, and now my cell phone is ringing!!! no, no, NO, I'm not going to answer you.  You are just a phone, you can't tell me what to do!!!


How is possible that there is a new Dr. Seuss movie?

I twirled yesterday and today. To me, it seems like a good way to exercise my shoulders so I don't get that "shoulder lock up" they talk about it.  That doesn't sound like fun.  I asked Mark to videotape it and its OUT there somewhere in youtube land - me in my surgical cami with my drains dangling. (if you REALLY want to see it search for greenmonkey27 twirl drains on youtube - but I must warn you, it isn't pretty)

I'm going to take a nap now.... but first I'm going to eat a special shortbread cookies that somebody very special sent me!  YUMMMAYYYY!!!

LOVE to you from Healing MonkeyME........ zzzzzzzzzzzzzzzzz

Mother Daughter Pre-surgical Moments courtesy of Ling Fong's laptop

PRIDE

The first time I felt pride in myself  was when I stood on the Junior High School auditorium stage and delivered a passionate speech about why you should vote for me for Student Council treasurer.  I wore a blue gown and curled my hair.

I won.

The second time I felt pride in myself was when i stood on the High School auditorium stage and gave a rebellious speech about why you should vote for me for Student Council Vice President. I wore ripped blue jeans and carried a large green stick (long story).

I won.

My next two moments of pride came at the birth of my children.  A few more flashes of pride came as I crossed the finish line at the New York City Marathon.

In between all that were days when I would coast.  Days when I would arrive half empty, or exit prematurely. Days when I, for whatever reason, lurked in the shadows.

But not March 5th, 2012.  On this day, I faced the darkest of all demons.  I wore nothing. I closed my eyes, and put all my faith in the power of love.

And I won.

My body is challenging me to learn, grow and blossom.  To keep my heart open when facing my fears.

My body is healing.

I have never felt more loved.

I have never felt more beautiful.

xo,MonkeyME

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen." ~ Elisabeth Kubler-Ross

Acceptance

My research is complete. My decisions are made. My bag(s) are packed.

It is time for me to turn inward.

I wanted to write to you all week. Instead I stored everything in my head.

On Friday I had pre-op testing and was told I have a heart murmur. When I asked for more details I was told my heart should go "flub dub" but instead it goes "dub flub." The doctor, a petite asian woman, sounded so adorable saying,"flub dub, dub flub" that I had her to repeat it several more times.

I explained that this could be a side effect of listening to too much dubstep. She didn't get it. I tried to explain dubstep. Still, she didn't get it.

Bassnectar photo courtesy of moviespad

It happened again. This is the second time it happened. The first time it was the radiologist that asked. This time, it was the nurse.

"Are you related to THE Kennedy's?"

"Your resemblance to Eunice is uncanny!" said the radiologist.
"The look is so distinctive" said the nurse.

photo courtesy of google image

The first time I said nothing but gave a coy, don't tell a soul look. The second time I answered, "Yes, on my fathers side."

I'm afraid of what I'll say the next time I'm asked. ("Please don't let another Kennedy die!")

I have been given an arrival time of 9:30 am. I am to report (on time) to the nuclear medicine department where they will inject my breasts with dye and scan me. After the dye reaches its destination - estimated time of arrival one and a half hours -  I will proceed to surgery.  Once I'm under, they will inject another dye that will aid in determining what sentinel lymph nodes will be biopsied.

This is important, I need CLEAN NODES!!! CLEAN NODES!!! Multifaceted, crystal clear, shimmering, clean, lymph nodes.

The breast surgeon will remove the tissue from both of my breasts along with my nipples and areola. Then the reconstructive surgeon will insert tissue expanders that resemble a deflated, non-regulation sized, basketball. About 8 weeks after surgery, and every week or so thereafter, they will slowly inflate them with saline. Four months after that I will be ready for my second surgery where they will remove the tissue expanders and give me my implants. I'm sticking with a full B cup size. If I opt for double D's it will take a year and a half.

At my request, my husband photographed my breasts from every angle. For one shot, I balanced a mimosa in the center of the chest.

I strung your cards on silk ribbon and draped them from a wood beam that stretches across my bedroom ceiling. They are a constant reminder that I am loved.

Yesterday, I shaved. To avoid infection, this is the last time I will use a razor until I'm healed. I also started using a disinfectant cleanser the hospital recommended - guaranteed to keep me germ free for up to 6 hours.

I took my fingernail polish off.  I took my jewelry off.

I burned all my bras. One house guest burnt her panties. I can't tell you who. (see hint in next line)

Miss Pegged bought a ice blue silk pajama's.  They are beautiful. They make me feel pretty and they will make siding in and out of bed easier.

I spent the last week visualizing and affirming positive, radiant, health.  I found a wonderful reiki practitioner who worked with me during the week and will continue when I am home.  I have been reading a book called Prepare for Surgery, Heal Faster by Peggy Huddleston which speaks to me on many levels.

By chance, I discovered my breast surgeon and my reiki practitioner are friends. They both go to the same church. They both have great respect for each other.  Knowing my breast surgeon is a spiritual being is very comforting.

I feel lighter.

I am ready.

All I need now is your prayers. I am asking that you visualize me wrapped in a radiant blanket of love. You decide what that blanket looks like.

By doing this you will prepare me for surgery. You will open me to healing. You will bring me peace and clarity. You will allow my soul to shine.

I love you.

xoMonkeyME

 





  

FEARLESS

catstir [kat - stur] noun: 

Code word for the other "C" word that rhymes with "dancer"

Sometimes, I am in a hole. It is dark here. It is dark (and safe) in this hole.

It is more like a womb then a hole.

Knowing I am abandoning my breasts is beating on me. I am frazzled. I am trembling. It is time I let go (I don't want to let go) and begin my healing.

My surgery date is March 5th. I surrender my catstir to the specialists at Memorial Sloan Kettering hospital.

I fear the pain. The emotion and physical pain.

I fear the unknown. A life without my breasts.

I do not fear death.

Today, I climb out of my hole and stare directly into the light. It is bright. I do not scurry. Today, I realize that THIS is NOT about cosmetics or convenience.  THIS is about catstir.

I match my aggressive, invasive, catstir with equal vigor. I am a fighter. I have tools and secret weapons that catstir has yet to face.

I will be donating "left over" tissue and blood for a catstir research study at Sloan Kettering. This makes me proud. This empowers me. I am certain MY blood and tissue will give them the answers they need.

I promise NOT to tell you what to do, but I hope my story will remind you how important it is to get yearly mammograms. YES, they are humiliating but they are necessary. GOOD NEWS...there is a new 3D mammogram just around the corner. It will give better images with less compression. Look for it in a hospital near you!

Clearly, I am broken. And the pieces will not fit the way they once did.

I miss you all. I miss me. I miss writing. I miss reading my favorite blogs.

I miss my father.  I miss him being fierce and strong.

I need my father.

Here, in the hole, my father did not die. He is fierce and strong. He is with me.

Here, outside the hole, my husband is with me. He is supportive. He is patient. He is loyal. He is brave.

In the hours leading up to my fathers death, between gurgles and gasps of air, he whispered, "Pennsylvania, Pennsylvania..." I knew what he meant. My husband was in Pennsylvania.

My father waited for my husband to return before he parted.

My marriage is strained in a way its never been, but this is not the time for me to let go of things I have control of.

I want this day, this week, this pain, to end. I want to get back to the (monkey) business of living.

I want to sleep. I want to rest my weary head... drift on the down of clouds. be mindful. be mindless. be fancy free. be me... monkey me.

xo, MonkeyME 

For a complete set of Catstir steps CLICK here.

My Odds

DISCLAIMER: 

I sugar coat nothing here. No one, and nothing gets hidden, or colorized, or disguised. (other than the word itself, catstir)

I do this because, I need to be honest. I do not practice honesty to hurt, or judge, or dismantle. But yes, sometimes that happens, and I'm trying really hard NOT to apologize for it.

catstir [kat - stur] noun: 

Code word for the other "C" word that rhymes with "dancer"

In My Dreams

I am driving in a car. I am accompanied by a snake and a honey badger.  At first, I think it is a skunk and worry it will spray me.  I am thrilled to learn this "crazy fuck" is at my side.  He eats the snake as it attempts to coil itself around my neck.  We approach a bridge. The bridge has no railing.  I turn to look at the honey badger and discover that he has eaten half of my car.  All that is left is the steering wheel, a gas peddle and the seat.  There are no brakes. "Get out of my car you crazy fuck!" I scream.  I wake up.    

How am I?

   

I am suffering from situational sadness. My catstir has disrupted my sense of normalcy. I am too sad for facebook, twitter, or any social media. I am too sad for social meddling of any kind unless I am not expected to be happy or entertaining. But because I am an entertainer by nature, I am disappointed in myself when I don't deliver.

Antidepressants will NOT help me.

Anticancer pills WILL help me. But so far, they don't exist outside of my mind.

Where did I go?

I don't recognize ME anymore. When I speak, think, or write, I am negative, bitter, defeated, and weak. I do not know this me. 

I have no clever stories to tell you. The only thing that churns inside my head are percentages and the odds of THIS and odds of THAT.

80% of biopsies are benign. 

Radiation therapy can reduce the reoccurrence of cancer by 70%. 

Radiation on the left breast increases the chance of coronary artery disease by 59%. 

Women ages 50 to 59 have a 2.38% chance of being diagnosed with breast cancer.

The risk of developing breast cancer in both breasts is about 10% over a lifetime.

How did a healthy, (arguably) well-balanced, 52 year old woman with no hereditary factors, and zero medical conditions, suddenly become uninsurable? What are the odds of that?  

If you REALLY want to be morbid, DeathRiskRanking.org can calculate YOUR risk of dying, taking into consideration, age, sex, place of residence, medical issues, etc.  

Why so Morbid?

I had an MRI on the anniversary of my son's birth and the following day I received more disconcerting news. My not-so-eloquent wording of this is, "my catstir has catstir." The medically correct wording is a "highly suspicious mass located behind the ductal carcinoma." There is a chance that this "mass" aka "tumor" is benign, but the catstir specialist says that is "highly unlikely."

This changes the game.  Just as the diagnosis of catstir in both breast changes the game.

My choice ...my personal, well informed, proactive, peace of mind, get on with my life, refusal to define myself by catstir choice, is to undergo a bilateral (double) mastectomy.  If my "mass" is not benign, I will undergo chemotherapy.  I may have to consider other medical options as well.

Please understand that this is a personal choice and yes, of course, after MUCH research and four opinions, I will incorporate western medicine, homeopathic remedies, and a bevy of mind empowering approaches to healing.  But PLEASE do not doubt or judge me. Or if you do, PLEASE keep it to yourself.

There was a time when my big decision of the day was whether or not to order a grande or a venti coffee at Starbucks. Now there are life and death decisions at every turn. And regardless of how prepared I am, I am constantly surprised by new developments.

The Need for BALANCE

This past weekend, the Secret Tea Party Society (STPS), an eclectic, generous in heart, group of anything but teatotallers, gathered to celebrate the simplicities of friendship.  Here, in this NO PINK zone, I felt safe enough to be vulnerable. I did not entertain and I was not expected to entertain. Here, I was able to turn off the volume and redirect my attention to the everyday joys of life.

I returned home with a magical, crystal GREEN monkey, a powerful, antioxidant elixir, a snowman I've named Sam, and a smile.

This coming weekend will be my last weekend before my surgery. My last weekend with my natural breasts. What will I do?  Where will I go?  How will I celebrate this dramatic change in my life?

I will be creating a CATSTIR cape. It will be green and silver, and silky and shiny.  I will wear it to my chemo treatments (if needed) or anytime I feel scared, or vulnerable, or overrun with pain, or the fear of pain, or the fear of the unknown, or just plain fear.  I will wear it when I feel alone. I will wear it when I need to be alone. I will wear it in celebration of a life well lived.  Deliberately lived.

Special thanks to those of you who wanted to HELP... 

Your cards brings me joy. Pure joy.
I plan to string them along the ceiling of my bedroom, so I can see them as I rest and heal.

xo, MonkeyME

  

Kerry

"self portrait" by Kerry Magann

The passage below is one of the last stories entered into Kerry’s black notebook.

It was Tuesday night and I was home alone.  It was too cold outside and too warm inside.  Charlie Parker was playing the saxophone and I was playing with the various forms of hair I could find on my body. 


I had dreadlocked the hair on my toes, a few patches on my legs, and my big pubic mop, and had begun focusing on my nipple hairs.  They stood coiled black, and obscenely proud, strewn across the death pale backdrop of my Irish potato skin.  It was an embarrassing scene.  I felt like reaching for a shirt though nobody was inside my apartment, and I thought about my days of cigarettes, and watching clocks, and T.V., and masturbating to early morning workout shows, and how I ever even managed to hold conversations with people, and how sad it all really was.  


And then I lit my nipple hair on fire.  I started on the right side lighting individually at the ends, watching them flam and fizzle out in an orderly fashion.  I was brushing the ash into my belly button, and everything was going fine until about midway through the left nipple when one hair got rebellious and decided to spread across the remaining forest.  That mother-fucker took a good chunk of my nipple (long pause) which made me fall backwards, hitting my head on the table behind me, which knocked me out and caused a loud sound which made my landlady call the police, who called the paramedics who, upon finding me on the floor, brought me here to this hospital, with doctors and nurses that proceeded to laugh uncontrollably, while calling every psychiatrist in the city down to see me.      

 

Happy 33rd Birthday Kerry

Lots of heartache here.  I trust you are in a better place.  

Love, Ma

My Dad cheering Kerry on.  Kerry with both feet off the ground

Kerry's Junior Prom.  Lindsay was so proud of her big brother

Kerry and Jackson

...And in the End

photo courtesy of visboo - beautiful examples of animal love 

On days when my sorrow feels too heavy, I go to bed early. But my dreams do not grant me the escape that I need...

I am on the operating table. My surgery is complete. My chest is bandaged tightly. My breathing tube is out. The doctors have left the room. One nurse remains. She is busy putting instruments away.  Her back is to me.  Her phone rings.  She takes the call.

She is laughing.

Loudly.

She does not see that I am choking on my own vomit.

I travel upward.  It's a fast flight forward through space and time.  I look back and see the paddles pressed against my chest. My body jumps from the jolt. I look forward and see my son. Beside him is my father. 

"Go back!" they yell. 

They won't let me touch them. I move forward and they step back. 

"Go back!" they yell louder. 

Without speaking I tell them I don't want to go back. 

"Lindsay (my daughter) needs you!" shouts my son.

She barely tolerates me, I tell him (without speaking).

"Mark loves you," says my father. 

He will find another, I tell him (without speaking).

"JACKSON!!!" screams my son.  

Jackson (my grandson)... I think about Jackson.  He is young, only 10.  My daughter is 21.  My husband is a man.  Jackson... can I leave Jackson? 

He'll be fine, I tell him (without speaking).  You said so yourself in the letter you wrote to him ...  

Dear Son, 

     

I am writing this to you on the tenth day of your life, the tenth day since you entered this world of ours, the tenth day since you brought the sun and so many smiles.  It's also my first full day and night away from you, but I'd rather not think about that right now.  I was forced to leave Wilkes-Barre and come back to work in Greenwich again, just as I have throughout your Mother's pregnancy.  Unfortunately, this is not an uncommon occurrence.

Because of work, because I somehow transformed into a somewhat "responsible" human without my noticing, I was not by your Mother nearly enough throughout her pregnancy because I believed establishing a financial foundation was the responsible thing to do for your future.  The "truth" remains to be seen, though I doubt the phrase should even be used in a matter so conflicting in its nature as to combat love against logistics.  It's an argument I will never win for either side of my brain, and I really have no idea how things will end up, or where we will all end up. The fact is that your Mother acted so truly brave the last nine months, never complaining, always smiling like the beautiful angel she is.  She has become my hero, and if things go as I hope she will be my wife very soon.  I love your Mother with all of my heart.  We are both lucky to have her.

Your future is infinite, so purely and clearly infinite.  I had always hoped and believed that when I finally had my first child I would have some important piece of wisdom to be able to give you, some magical answer I would stumble upon at some point that would be passed on to you eventually.  But I have nothing like that to give you.  Life is not like that.  There is no simple answer or magical secret.  The only conclusion I have come to in my life is to live.  It's something we often forget.  But live, Jackson.  I once told your Mother to live and burn, and that is also what I hope for you.  May stars fall gently upon the sea you choose to sail, my son.  

Be good, 
                   

Dad

P.S.  Read!!! Read everything you can get your hands on.  And remember what Mark Twain said..."Man is a fool, but woman, for putting up with him, is a damned fool." That means always treat your Mom like the queen she is, and remember that we are inferior to women because no man has ever been able to even slightly comprehend any woman that has ever lived. 

"You haven't learned your lessons!" shouts my father.

I hate it when my father shouts.

"You'll have to come back and do them all over again." 

What lessons? I ask.

No one is speaking. 

What lessons!!! I shout.

Dammit... I so don't want to repeat the self loathing, the self doubt, the clueless, selfish, fear driven suffering.  

I go back. 

I go back. 

I am on the operating table. My eyes are open. The light above me is bright. The room is full of people - doctors, nurses, rushing.  Everyone is rushing.  My husband is in the corner, crying.  

I am not breathing. 

My heart is not beating. 

My skin grows cold.  Cold and gray. 

It is too late.

Happy Valentines Day

xo, MonkeyME

HELP!!!

catstir [kat - stur] noun: 

Code word for the other "C" word that rhymes with "dancer"

"If there is anything I can do to help, please let me know." 

I have heard various renditions of this phrase numerous times over the past month.

What else do you say to someone in my predicament?

So far, only ONE person has been able to say, "I know what you're going through" because her father died from Parkinson's disease while she was battling breast catstir.

On top of all this, I've got husband issues, and insurance issues, compounded with my usual insecurities and idiosyncrasies.

I'm a bit of a mess, don't you think?  Are you afraid to stand too close, or share your drink?

(Why am I getting so Dr. Seussy?  Does catstir make you Seussy?)

There is this BIZARRE rumor out there that I am not capable of allowing people IN. That I am incapable of allowing others to help me. This is so not true and I can prove it.

I'd like to introduce you to my core, support group.  These people have the inside scoop. These people surround me with unconditional love and compassion...

Jay
Miss Pegged
Bull and Dust Bunny
Jesse and Julie
Robin
BUTTA!!!
Inky
Tracy
Lisa
Kathy
All the OE's
All the ladies on the Breast Cancer Org site.
Fellow Bloggers who won't allow me to hide
Sandy Girl and Sweet Sue
Miss Claudia
Anni
Camille
Colleen
Elizabeth
Fox, Turtle, Lion
Marilyn
"My friend Bev"
The waiters at Pasta Vera
Rodney the meter man (he's got double insurance!)
Kevin the masseuse (who doesn't understand a word of english AND has great hands)
Arjune, the bartender at McDuffs, who refuses to let me feel sorry for myself (hell, he won't even buy me a drink!).

Toss in Mark, Mary, and my mother, and it's a lovely bunch of coconuts!

All of you are healing and helping me in profound ways. And even more outstanding, none of you are second guessing me, or preaching to me. 

But today, I'm focused on the people who have never met me, yet have gone out of their way to help me.

Phyllis, in the pathology department, who on the "QT," broke hospital policy and handed over my biopsy slides so that I could deliver them quickly to my third opinion.

Wander, who comforts me with his stories. He reaches out, regularly, expecting nothing in return.

And finally, the sweetest help of all came from an unknown child in Miss Mary's religious education class.  She explained to all of them that Jackson's grandmother was sick, and instructed them to make me a card.  This is my favorite:

My Pray to you! 

Do not try to run up the hill. 

you are ill

I'm writing you this letter 

I hope you get better

LOVE

So... for those of you who want to know what you can do to help, I have your answer. You can make me a card!  I always insisted my children make their cards.  I continue this tradition with my grandson, Jackson.  Why should you be any different.

Hand made cards can be sent to:

Shannon Kennedy
58 East Elm Street
Greenwich, CT  06830

xoxo, MonkeyME  

SMILE

In the brisk shadow of a melancholy morning, a thick layer of frost encapsulates my windshield. I reach  into the trunk of my car in search of an ice-scrapper, and instead find a double tied, bulging bag of chocolates that I had forgotten to give to my father. It is my first and only regret.

On Sunday, January 29th, 2012, at 9:50 pm - I along with my sister Colleen, my husband Mark, and my fathers caregiver Roshan - witnessed my fathers final breath.

He fought hard and long and in the end, he went out on his own terms. It was dramatic. It was beautiful. It was a privilege to be by his side, just as I have been for most of my adult life.

I was instructed by the Monsignor to keep my father's eulogy to 5 minutes or less.  I wanted to tell the Monsignor how callous his comment was, instead I bit my tongue and delivered a eulogy that lasted 5 minutes and 20 seconds.

The first time I read anything I had written out loud, was here, at my son’s funeral, with my dear friend Sandy by my side. When I finished I caught a glimpse of my father.  He was smiling. It was the first time I knew he was proud of me.

I stressed about what I would say today, during my 5 allotted minutes, and then realized most of it has already been written. It is the beginning, and a continuing thread in my memoir.

Chapter One begins…

It is the first taste of summer, the first Friday of June, when the sun and wind are in perfect tune. 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.

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 … 

My father and I did more together after his diagnosis then we did in all the years prior.

 

Instead of being a man who was forever on the go, he became calm, soft spoken and complacent.  No matter what I suggested, his answer was always the same... “OHHHH kay.”

Together, on the suggestion of his fellow college football allie, Ed Yeterian, we went to the University of Notre Dame and witnessed an Army vs Notre Dame football game.  It was the first time we had been on a plane together. 

We went to Giants football games.  We went to several Uconn Husky Womens basketball games.  

We took a road trip to Vermont, to visit my sister Colleen and reminisced about our days skiing on Killington Mountain.

We took endless trips to the cemetery, to the ice cream parlor, and to job sites.

We did things for him but we also did things just for me.

On warm, sunny, Tuesday afternoons we took tia chi classes in Havemeyer park. We took zumba classes at the Senior center.  We went to polo matches at Conyars Farm. We took the ferry to Island Beach where my father would eat 4 or 5 hotdogs smothered in onions and mustard, then put his feet in the sand, and stare silently at the sound.

In the wake of my son’s death, timed with the onset of his Parkinson’s disease, our family grew closer.  We did simple, deliberate thing together.  Easter egg hunts.  Halloween trick or treating, and random excuses for celebrations.

In June of 2009, we went to see the epic, science fiction film, Avatar.  It was our first and only time together at a movie theater.

Parking was difficult.  I struggled to get as close to the theater as possible.  When I outmaneuvered a young woman to get a parking space, she challenged me in a verbal fit of words. 

With one hand steadying my father, I did my best to defuse her but she was cruel, crude and cunning.

“Shut up you old cow!” she screamed.

 

Had my father not been there, I would have given her something to talk about.  Instead I wished her a good day and into the theater we went.

For the next two hours and 42 minutes, I stewed about the altercation. The only thing I remember about the film was how adorable my father looked in his 3D glasses. 

As we exited the theater I asked my father if he liked the movie.

“It was okay” he answered.

“Well then,” I asked, “what was your favorite part?”

With a twinkle in his eye he answered, “when that girl called you an old cow.”

I know my father would not want me to talk about his accomplishments.  But he would want me to thank those of you who increased the joy quotient in his daily routine. 

Number one on that list is Roshan.

For almost two solid years, Roshan cared for my father but it was never a job to him.  Everything he did came from a place of love.  He cooked, cleaned and comforted my father in a way that he had not experienced since he was a young boy.   Because of Roshan I never worried about my father.  Through example he taught me about dignity, compassion and grace .

This may come as a shock to some of you but Butch Daly, is not my brother, father, uncle or husband… More importantly, in addition to being a coworker, a comrade, and a confidant - he is by far, the most loyal man I have ever known.  He has been devoted to my father, to my family, to the dogs, and to the company for over 45 years. 

My father stopped worrying about me the day Peggy Curcio came on board.  In addition to running the office, she reads my mind, finds my car keys, reminds me to turn my car off and accompanies me on tasks that range from complex to comical.

In respect to the honorable William B. Lewis and the entire Lewis family, you made a major impact in my fathers life, and in turn, in my life.  You made him an extended part of your family.  You opened your hearts and your home to him.  You taught him how to be a father.

In addition to his family, my father was surrounded by a quirky collection of friends. Those here and in the hereafter who taught me something unique about my father. This includes but is not limited too:

Walter Mckeever, Dick Degnant, John O’leary, Dave Peabody, Charlie Feldman, Robert Krause, Steve Sherry, Teddy Morano, Father Joe Shay, Jack Newel, Ed Silva, Hugie Quinn, and the entire Halligan clan, you are the best of the best.

In closing I’d like to thank all of you who wear the Kennedy name on your back, on your sleeve, on your hat, and especially in your heart.  Know that, every day, you made my father proud.

My father lost his ability to smile towards the end of his life.  A reminder to me that I will smile, often. I will smile especially when I feel I have no reason.

xo,Monkey ME

This is the last video I have of my father in a healthy state.  It ends with...

Monkey ME:    ..."Don't say goodbye, say goodnight.  Love you." 

Dad (oh, so softly):  "Love you."