Saturday, March 23, 2019

Irish Eyes

Tomorrow is the annual Greenwich Saint Patrick's parade. I will not be attending. I'm not boycotting anything. I'm not against drinking, parading, good luck, leprechauns, pots of gold, or lewd behavior. This year, even though the weather forecast looks FABULOUS, I will be hiding at home as I recover from yet another round of anesthesia. A sedation vacation as they say.

I thought about dusting off my leprechaun costume (yes, of course I own one) and sporting a ginger beard to hide my face in progress but I don't own a red beard, (a black one, yes) and even if I did, it might aggravate my inflamed face.

Unlike some people, who deny or deflect any admission of cosmetic enhancement, I am flaunting it.

In June, I will be celebrating my 60th year on earth. It's been an interesting time here. I've overcome and grown a lot..... BUT, my face shows it. Besides, I often find myself attracted to (much) younger men and I'm tired of saying I'm 8 years older than I actually am just to hear, "Damn, you look good."

This is also the year I discovered I have a double gene mutation called CHEK2 that makes me susceptible to a multitude of cancers. I won't mention any of them specifically because I don't want to give them power. Besides, they already know what a proactive, bad-ass I am.

It took me a few weeks to process the information. I joined a group of us weirdo's on facebook. I notified my family (as directed), even the ones that won't speak to me. I met with my oncologist and forwarded my genetic reports to all sorts of cancer databases.

When I finished all that I decided to stay calm, carry on, and LIVE BIG. It's pretty much been my plan all along but there is still some tweaking to do and I'm on it!

When it comes to the issue of WHY ME, a question cancer patience often obsess over, genetics make up only 5 to 10%. The CHEK2 mutation is rare. A double strand is even rarer. So far, I haven't found anyone who has the same double strand as me. If you know me, you should not be shocked. I'm odd.

I imagine that when I do find that person with the same CHEK2 double mutation strand, he will be a handsome, successful, hilarious, seriously scarred man (internally and externally), and together we will live a somewhat shortened, yet deliberate life together.

WARNING: I do not give you permission to turn this post that is MY LIFE into a harlequin romance novel, or a major motion picture, or anything in between.

The good news is, the root of my 6 cancer diagnosis's has nothing to do with Jesus punishing me (as my sister informed me with the utmost certainty). It's not about my lifestyle choices, prolong exposure to playa dust, standing mindlessly in front of the microwave, or hours basking in blue rays that bounce off my computer screen. And to my surprise, it has nothing to do with the fact that I once "dated" two men on Good Friday (not a good day that fell on a Friday, the actual holy holiday).

I've made a deliberate decision to stay focused on living and part of that, for me, means putting my best face forward.

This gene mutation thing came shortly after my third melanoma diagnosis. When they told me they had to go back for a third operation because I wasn't healing and they weren't sure why, coupled with 6 new pre-cancer spots on my face, I elected to do a CO2 laser at the same time as the surgery. I had the option of having some sort of boring laser which would have eradicated the pre-cancer and was covered by insurance OR, the CO2 which removes the pre-cancer and has cosmetic benefits.

I thought about this for about 15 seconds and went with the CO2.

Because I'm odd (see how I'm repeating myself), I fell into the small group of people who developed a reaction to the CO2 laser that is similar to shingles. Besides the pain and blistering, I have a red rash around my mouth that makes me look like a bad clown.

I am now on medication that makes me weepy and tired. Here is the worst part... wine aggravates it and Vicodin gives no relief.  So while you are out there, living it up, think of me... clown down in the confines of my condo waiting, patiently for my new face to arrive.

Because I go big, I included a few other cosmetic procedures in this new, about-to-be-60 face, and I'm happy to tell you what they are, but I'm going to make you guess first. So, when you see me out and about, please play along. Winners get the name and number of BOTH my cosmetic surgeons.

One cancer perk is that you meet a lot of doctors and quickly learn how to weed out the good from the bad. These two, highly skilled, humble surgeons agreed to share me. One took the left side, the other the right.

Even today, in my vulnerable state of recovery, when I stand naked in the mirror, I see a fierce, brave, bold, Irish lass. I know my father is proud. And I know, in the end, I'll have no regrets.


xo, MonkeyMe

Tuesday, February 6, 2018

To Bull, with Love

Bull Bunny in the Jelly chair - Tutu Tuesday, Burning Man 

"Why So Serious?"

Those were the last words Bull wrote to me.

I had sent him this ridiculously long message explaining why I left Burning Man without saying goodbye.  

I went on and on apologizing for not contributing more to our camp.
I apologized for not making camps meals and for not cleaning up after meals.
I apologized for not building our camp and for not breaking down our camp.
I apologized for my minimal mooping efforts.

(For those of you who are not Burners, moop stands for “MATTER OUT OF PLACE” and that’s a bad thing at Burning Man. And we, as a responsible society, need to LEAVE NO TRACE at Burning Man. That means raking, scooping and plucking every tiny speck of glitter, sequins and feather from the playa. It’s a tedious task and I suck at it.)

Bull once said to me, “You know Monkey… bending over, at just the right angle to grab the attention of the LA boys, is NOT mooping.”

(For those of you who are not Burners… LA boys are these young, super hot, wafe-like, lowriders,  that frolicked around our camp. Adorable, creatures… all of them.)

Bull caffeinating two LA Boys

Bull organized our camp, filed the necessary paperwork for our camp, hauled and built the structural components of our camp, broke down the camp, attracted our campmates, nurtured our campmates, entertained our campmates, fed and caffeinated our campmates.

And he did it all from a place of LOVE.
With NO ego.
And he did it asking NOTHING in return.

He utilized our strengths, engaged our eccentricities, and overlooked our weaknesses.
He celebrated the freak in us.
The uniqueness of us.

Bull delivers the bride

Part of my ridiculously long last message to Bull, on why I didn’t do what I should have done at Burning Man, included my unease around a sign that was posted in front of our camp.  It read BEFORE I DIE.

People passing by were encouraged to write their “to do list” after that statement.

In a general sense, “Before I Die” is thought-provoking and motivating. It’s a fun, interactive way to engage other Burners.

BUT…if you are unlucky enough to be facing a life-threatening illness...
If you’re coping with the reality that your life might be cut short…
That despite all your efforts you may never make it back to the playa, or ski the swiss alps, or smoke a cigar in Cuba, or party in Paris, then “Before I die” is a cruel, imminent reality.

Bull disagreed with me when I mentioned this to him which now, in hindsight, tells me he didn’t know he was dying, or if he did, he had come to terms with dying. And that’s a beautiful thing.

Bull was a complex, eccentric, multi-talented man.
A flaming mass of contradiction.
Brawny and graceful.  Blunt and eloquent. Scrappy and refined.

Brilliant… Bull was brilliant.

I love Bulls facebook answer to the question “STUDIED AT.”
He answered, "Studied at the base of an enormous pile of books in the basement."

I just love that.

Bull hovering just outside the Shit Shack

We knew Bull in various ways. Whether it be from his work behind the lens in the motion picture industry, from over 50 Southern California stage productions he appeared in, from his distinctive black, red and white art sold on Venice Beach, or from his creative, combustive, efforts as our camp lead at Burning Man. 

Bull's gift to me

We knew him because he gave so much of himself - in everything he did.

But what I didn't know is Bull without Jeanie. 

Bull and Jeanie aka Dust Bunny

I have never known Bull without Jeanie.

When I first saw, sniffed, stewed, and simmered with this man, Jeanie was at his side.


I know he was stubborn. And I know he was unapologetic. But I also know that most, if not all of his motivation was YOU.

He loved you in the way that every man should love a woman.
He had great taste in women.

He respected you. He celebrated you. He uplifted you. He protected you. And sadly, way too soon, he set you free.


This unselfish love, this BIG BULL BUNNY love never dies.

This I know for sure.

Believe me when I tell you….

Just because he isn’t here, doesn’t mean he’s gone.

I will never forget what his big, Bull Bunny love taught me. Where it brought me. 

I will celebrate this man in every creative, loving, kind, endeavor I do.

This is how I will honor YOU.


Michael Ross Oddo 

Tis a fearful thing
to love what death can touch. 
A fearful thing
to love, to hope, to dream, to be-
to be, 
And oh, to lose. 
A thing for fools, this,
And a holy thing, 
a holy thing
to love. 
For your life has lived in me,
your laugh once lifted me,
your word a gift to me.
To remember this brings painful joy. 
'Tis a human thing, love, 
a holy thing, to love
what death has touched. 

Yehuda HaLevi (1075 – 1141)

Friday, July 14, 2017

My Friend Glenn

I haven't felt compelled to write in a little over a year. Mostly because nothing has pulled on my heart as much as the loss of my friend, Glenn. 

I was at his side when he took his final breath. Like a birth it was intense, painful and beautiful. I am less afraid of dying thanks to Glenn and even more determined to live.

Glenn and I met through work. He was sent to assist me with my property management duties and me, being a hard ass, control freak, incapable of taking directions, was convinced he was a spy.

Before knowing Glenn, I decided I loathed him. How dare he give me his opinion or try to curb, correct, or govern me.

My venom was fierce but being a true alpha feline, before inflicting pain on my prey I paused to study him. And when I did I noticed that Glenn was smart and witty, sweet and quirky, kind and compassionate. And on top of all that, he was a HUGE animal lover. It is impossible for me to strike down an animal lover.

I didn’t know Glenn as long as most of his friends, but I was there at the end and endings are very telling.

Glenn was relentless, courageous and unapologetic. Glenn never lost hope. No one, not even his doctors, could convince him that he was nearing the end of his life.

Glenn was a very private person and because of this, most of his friends did not know how gravely ill he was but he shared the reality of his merciless illness with me. I think to Glenn, I represented hope. "This is my friend, Shannon. She's had 5 cancers," he would say when introducing me to the hospital staff.

Glenn never wanted people to feel sorry for him, so he never complained. After a round of chemo I'd ask him how he was feeling and all he'd say was,"Oh well, you know how it is."

Glenn loved his friends. I know this because I heard the stories. There were so many unbelievable stories that I didn’t think most of them were real. They seemed larger than life - a famous Antique Road Show art appraiser, a master chef, a brilliant mathematician, gospel singers, actors, heads of corporations, even a group of nuns. Glenn spoke in great detail about his talented friends. People, he would tell me, that were almost as smart as him.

Glenn held many jobs over his lifetime, but what brought him the most joy was coaching tennis. Glenn spoke often about his students. To Glenn, each of them was special. He had the unique ability to recognize, nurture, uplift and promote the best in them.

During his last hospital stay, he told me about his friends Paul and Tom, and some guy who was the best kayaker on the east coast. He told me how they hiked mountains that straddled the Hudson River in NY. He showed me pictures of some of those hikes including Breakneck Ridge, Anthony's Nose and Storm King. This inspired me to go on a hike of my own. When I told him this he urged me not to go on challenging hikes because of the intense vertical ascent and steep rock escarpment. "I know you think you're in good shape," he told me, "but you're not." This was the kick in the ass that I needed. I sent Glenn pictures of myself and my fearless friend Yvonne on top of Breakneck Ridge - elevation 1,620 feet. With arthritis in my left knee, a grade three meniscus tear on my right, zero core strength due to major abdominal surgery 8 weeks earlier, no upper body strength and minimal aerobic conditioning, clearly I had no business being on a mountain of this magnitude. I never told Glenn he was right.

In the hours before he lost consciousness, I asked if I could stroke his hair and he said yes. Initially, this was an uncomfortable gesture because, despite our closeness, we never touched not even a warm embrace.

Later, I told him I loved him. Initially, these were uncomfortable words because, despite all we shared, we never spoke about our emotions. Despite our holidays together, our simple moments together our sushi dinners, our walks with my dogs, cooking, laughing we never expressed our appreciation for each other. But when I told him I loved him, I fully expected his reply to be… “Yes, Shannon, I love you too. I have loved you since the first moment I set eyes on you…”  Instead, he said, “that’s nice to hear.” 

Glenn never wanted to be a burden to anyone, so he never asked for help. But when he assigned me as his next of kin, he empowered me. In illness, we feel powerless. But when he held out his hand, he allowed me to pull him closer. This is the gift that comes from loving someone worth loving.

While in the ICU, Glenn asked me to steady his hand during his last paracentesis a painful gut draining procedure he endured multiple times during his battle with liver disease and cancer.  I think he asked this of me because he wanted me to witness his bravery. Glenn was very brave.

Glenn’s work ethic never faltered. Despite being in pain, weak and severely jaundice, he attended a board meeting with me on June 27th. Three days later he was admitted to Yale New Haven Hospital.  I was with him when he strutted out a few days later. He had two glorious days at home, one of which he spent at a Fourth of July party where he savored good food and friends. Later that day, liver failure and elevated ammonia levels in his brain caused confusion and he was taken to Bridgeport Hospital where, a week later, he passed away.

As most of his friends know, Glenn was a devoted son. The care and compassion he showed his mother throughout her life and especially during her decline, speaks to the soul of this man. And for a guy with no living family, no one who was obligated to care for him, he managed to surround himself with love. He was never alone. Whether it was his neighbors, his co-workers, or his amazing friends, no one turned their back on Glenn.

Glenn, you were truly one of a kind. I love you…

Glenn Baron 
8/8/63 to 7/12/17 

A Happy Birthday message to Glenn - Ireland 2016. Even the cows chime in.

Thank You For Encouraging My Joy of Writing

Thank You For Encouraging My Joy of Writing

Shannon E. Kennedy


Photo by Joan Harrison