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.
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.
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
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.
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
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."
