Saturday, December 28, 2013

The Art of Romance

Falling in Love again
1949 Colliers Magazine Illustration by Fred Irvin

As a child I was captivated by the heartwarming tale of Disney's, Lady and the Tramp. As a young girl I was perplexed by the turbulent passion between a manipulative southern bell and a scandalous adventurer in, Gone with the Wind. As an adolescent I studied the complexities of Audrey Hepburn's sexually sophisticated yet sweetly vulnerable character Holly, in, Breakfast at Tiffany's. I cried for months after witnessing the tragic, untimely death of Jenny and the devotion of grief-stricken Oliver in, Love Story.

In my late teens, convinced romance existed beyond the big screen, I left my small town in search of my very own leading man after watching and singing my way through Barbra Streisand and Kris Kristofferson's, A Star is Born. As an adult I fed my incurable need for romance by devouring such romantic classics as Bridges of Madison County, Far and Away, Hope Floats, The Notebook, Jerry Maguire, and On Golden Pound, to name a few.

But by far, The Pink Tutu is my favorite of all love stories. This real life love story highlights one mans simple quest to make his wife smile during her chemotherapy treatments. His artistic endeavors have ballooned into The Tutu Project, the fund raising efforts of The Carey Foundation for women with breast cancer. Bob Carey's self-portraits, adorned in a fluffy pink tutu and frolicking in settings that stretch across the United States and Europe, ignite laughter and hope.

Bravo to leading men everywhere who love, comfort, support, embrace, and celebrate their heroines as they battle this relentless, senseless disease.

It is a love story I know I deserve, and I pray I will be given the time to find.

xo, MonkeyME

Wednesday, December 18, 2013

Character Development

It is day four of 90 Days To Your Novel, a day-by-day plan for outlining and writing a book (or in my case a memoir). It was a gift from my soul sister, Mairead. If nothing else, it's a welcome distraction from the relentless churn of the chemo train.

I tend to do better with goals if I tell people about them. So here I am, confessing my intentions. I've signed a contract with myself and my completion date is  PI  (3.14), March 14th. This is also my husbands birthday. So instead of mourning the birth anniversary of a lost love, I'll celebrate the volatile chapters of my glorious life.

Todays lesson focuses on character development. Several questions were asked so that the reader could gain a sense of who the main character is. Since this is ME, it shouldn't be too tricky.

What do you want most in life?  LOVE

What was the most important thing to have ever happened to you?  The loss of LOVE, or what I initially perceived as the loss of love - the death of my son.

What is your middle name?  Elizabeth

Where do you work?  At a company that my father built and has rewarded me with a great sense of pride and independence.

What is the favorite thing about yourself?  Knowing that on any given day, chances are good that I will make you laugh.

How do you drink your coffee?  Starbucks breakfast blend, french pressed with six pinches of cinnamon. In a hearty, two fisted mug, goes a teaspoon of raw sugar and 3/4's of a cup of warmed and frothed, 1% organic milk. It's more complicated than it needs to be and I enjoy the process.

What is your favorite holiday?  I am the costume queen, so it's Halloween.

What kind of music might you listen too?  Tonight, I am paralyzed by Caleb's vocals in Wait for Me.

I saw the surprise
The look in your eyes
I gave it up
Gonna be who I am
Be who I am
And give it up...

What is the color of your bedroom?  French Blue

What age was your first kiss and what was his name?  I was seven. I gave two boys, Michael Pope and Jimmy Griffith, the key to my bicycle lock and watched them race each other down the hallway, up the stairs, and out the door to the bike rack in the back corner of the school yard. The first one to reach my bike got to unlock it and walk me, and my bike, back home. This went on for several months. Midway through spring, I declared them both winners and rewarded them each with a kiss.

What are your favorite childhood memories?  Getting lost in my imagination...hiding in the barn behind my house, riding in the backseat of my father's car, fairy hunting, skiing solo.

What scares you the most?  I'm in the thick of it - pain and suffering. The lingering sting of a pain that drugs can't numb.


The barn behind my house is the perfect place to hide. Confined in cobwebs and creepy crawlers, no one dare go inside. Tucked low against a musty wooden post beam, I sit with my knees pinned tightly against my chest. A cracked, weather-beaten window covered in faded yellow newspaper and caked with dust, keeps most the sun out. The barn door is two-tiered just like the one in Mr. Ed, my favorite television show.

No one remembers animals ever living in the barn but I can smell them.  I’ve scrubbed the cool concrete floor with Mom’s minty green Palmolive soap - sprayed it with water from the garden hose and watched streams the dingy grey suds flow around the troths and disappear into the muddy base drains. I bet it's old horse poop I smell, maybe some from cows and chickens too.

Dad says he’ll buy me a pony, any pony I want. Mom says NO but Dad doesn’t know that yet. I want a black pony with a white diamond on his forehead. His fur will be shiny and his eyes will be sweet. I'll feed him carrots, hay, and alfalfa, and let him wash it down with gallons of sweet tea. He won’t scare me because we’ll both start out small. He’ll grow up strong and so will I.  

xo, MonkeyME

Sunday, December 8, 2013


I am stuck in the CRASH of chemo - when your body comes off the steroid high. The steroids they give you to counteract the side effects of a drug that is intended to save your life but could also kill you.

I don't know how people do chemo for life. That is what stage 4 cancer patients face. I am in round 3 out of 8, and I am miserable.

If this doesn't work, and the cancer comes back, I will let it be. I'd rather the cancer kill me than the chemo. I'm okay with surgery, cut it away if you can. Radiate it, if you can. It's not pretty but it's doable. But this, the chemo juggle, seems futile.

Tuesday, after much resistance, they placed the port in me - a catheter that shoots the chemo into a large vein directly above my heart. I followed that up with my third oxaliplatin infusion.

I cried for four hours straight the day they put the port in. I cried for the loneliness and ridiculousness of my illness. I cried for the suffering I endured as a result of 7 breast cancer surgeries - 1 to remove my breasts and 6 to reconstruct them.

But mainly, I cried for my deceived, betrayed, abandoned, badly wounded heart.

A dear friend recently wrote, "You miss him because you are remembering the good. Remember the bad."


But for today, I am stuck in a Dave Matthews song - haunted by a cryptic sax, deafening drum and hypnotic strum, and crashing in waves of promises that no longer include me.

xo, MonkeyME

Tuesday, November 26, 2013

Fine Print

Fine printsmall print, or "mouseprint" is less noticeable print. Smaller than the more obvious larger print, it accompanies, advertises or otherwise describes a commercial product, service, or state of mind.

My fine print is rather bold. It reads:

Chemo, solo, sucks.
Chemo sucks.
Solo sucks.

That's my truth. That's why I haven't posted in weeks.

If I don't spin sunshine and honey out of this debauchery, my reality is difficult to digest. I am your worst nightmare.

Right now, most of what flows from my heart and my head is counterproductive.

Right now, I'm squatting in a vat of self-pity, self-loathing and self-punishment.


I hate the holidays. Always have.

Under the best of circumstances, the pressure to be merry and grateful is exhausting.

I don't like to be told what to do, or how to act, so I resist shopping and forced expressions of gratitude.


They say you lose friends along the way. That your cancer beats them down. I certainly hope that's not true. I need everyone. Every single one of you.


Because, in the past, men have been my drug of choice - I've elected to give them up for a period of one year.  It's harder than I thought. I'm counting down the days (307 remaining).

I need to learn how to love myself. And my love of self has nothing to do with how desirable and irresistible you, with penis, think I am.

Clearly, after 54 years and three failed marriages, I am a slow learner.

What angers me the most are the choices I made that brought me here. And the reality that most of my pain is self-inflicted.


I adored my father.

"Don't look back," my father would say after each of my failed relationships.

And yet here I am, fixated on the rearview mirror.

LOOK ... that's ME ... back when I was healthy. Back when I thought my marriage was strong. Back when my smile said it all.

I don't know for certain who ME is anymore but I know that ME is not my cancer.


xo, MonkeyME
whoever that may be

For a complete list of my ridiculous cancer journey click HERE

Wednesday, November 6, 2013

Fairy Infusion

I have done many bold, adventurous things in my life. Some required courage, others resilience, and several were an exercise in reckless stupidity.

I climbed the Mayan Ruins, swam with sharks, ran five marathons, skydived, parasailed, hung upside-down on a flying trapeze, rode in an ultralight 12,000 feet above Burning Man, rode a flying pig at Burning Man, spun fire topless in a wind storm at Burning Man... 


The other weekend I chased what looked like a sniper in the back of a pick-up truck, down interstate 95 so that I could get a picture of him with the hopes of blogging about it.


Imagine if my cause of death ended up being ballistic head trauma due to a high velocity bullet from a masked madman's semi-automatic weapon and NOT cancer.

But hands down the most frightening, the most daring thing I've ever done is chemotherapy. I feared chemo more than cancer, more than surgery, more than death itself.

Two weeks ago, with my soul-savvy daughter by my side, I faced my deepest fear.

Initially, I was adamant about not doing the drug oxaliplatin because of its potential long term side effects but eventually long term side effects seemed a small price to pay for a 27% chance at a longer life.

Besides, if Luciano Pavarotti (pancreatic), Walt Disney (lung), Steve Jobs (pancreatic), and Bob Marley (malignant melanoma) couldn't beat cancer with their wealth, talent and tenacity, then I knew I had to be courageous and committed to finding my cure.

The side effects from the infusion were immediate, intense and intimidating. I developed chest pain and pressure thirty minutes in that required additional monitoring. I developed an extreme sensitivity to cool temperatures the minute I walked out of the hospital. I couldn't breath the brisk fall air without the sensation of slivered glass pureeing my throat. I couldn't touch anything cold, even with gloves on. I couldn't walk outdoors, even with winter boots on without pain, similar to an electric shock, shooting through my body.  My eyes hurt, especially when I cried and my jaw hurt when I chewed. I couldn't swallow anything unless it was heated. Even room temperature was agonizing. I developed extreme pain at the site of the infusion and my doctor worried the surrounding tissue might had been damaged.

Despite all this, I am okay. I am wiggling my way around the unpleasant side effects and I am learning how to ask for help.

When I worried I would not be able to care for my dogs, my neighbors came together and offered to walk them. When I broke down crying at the grocery store because I couldn't hold a quart of milk or a package of cheese, my neighbors, family and friends, pitched in and brought me food.

Because I recognize that my mind is powerful, daily affirmations and visualizations are some of my wellness tools. I have mentally replaced the "poison alert" label on my chemo drugs with a "fairy alert."

My infusions enlist the aid of hundreds of flittering fairies whimsically gliding through my bloodstream. Intoxicating, fierce fairies darting around platelets, capillaries and lymph nodes - detecting and destroying the genome instability of minuscule cells before they have a chance to feed and form tumors.

Slowly, I'm doing it. I'm learning how to cope with my diagnosis and my treatment. Fear still bubbles up but mostly it's about tomorrow so I'm focused on today.

Today I studied the dance of golden gingko leafs against a milky blue sky, and the call of a catbirds song at dawn. Today I cared less about what I looked like and more about discovering my life's true purpose. Today, while savoring my coffee, I got down on the floor and thanked Sasha, Lucy and Phoebe for their love and loyalty. One by one I stroked their fur, scratched their sweet spot and watched them eat their treats.

Today was a very good day.

For some it's diabetes, or auto immune disorders, or chronic pain, or heart disease. For me, it's cancer. But that's not an excuse to stop living. It's a reason to live larger.

xo, MonkeyME

Photo by Sarah Hickox taken at Burning Man 2006

For a complete list of my ridiculous cancer journey click HERE

Sunday, October 20, 2013

Do Us Part

I am someone who is looking for love. 
Real love. Ridiculous, inconvenient, all consuming, cant-live-without-each-other love. 

Carrie,  Sex and the City

Zip, Zip, Zip...

Three zips is all it took. Everything deemed necessary neatly placed into two, oversized suitcases and one carry-on bag. Steadily he loaded them into his MINI-cooper, topped it off with a six-pack of beer and a bottle of wine and off he went. He didn't look back. He didn't wave.

To punish myself, I stood at the kitchen window and watched his every move⎯adjust rearview mirror, remove baseball cap and straighten hair, two hands on the wheel, rev engine and release.

His complacent expression signaled relief but then again, it's hard to read that poker face.

It is arguably more difficult for the one who stands guard than the one who is struck down. I have often said, I am glad it is me. I don't want to live a day without him in it. And yet I asked him to leave.

Those in my inner circle, including my doctors, know the details of our debacle and all agree that, though terrible timing, I have no choice. I can't heal him and he can't help me.

He is a good man. He has a good heart. I pray he finds his way.

It's been almost four weeks since he left. I don't know how to be sick without him. I don't know how to stop loving him. But I have to learn.

They say if you have your health you have everything. They say all you need is love. I am desperate for both.

What I fear most, next to dying, is pain, rejection and loneliness. For the first time in my life I am alone. I am alone in my home. And chemo is knocking at my door.

"The most frequent question people ask me is why I think I got cancer. I can sum up the answer in one word... FEAR. What was I afraid of? Just about everything, including failing, being disliked, letting people down and not being good enough. I also feared illness, cancer in particular, as well as the treatment of cancer. I was afraid of living, and I was terrified of dying." 

                                                            DYING TO BE ME, Anita Moorjani

xo, MonkeyME

Tuesday, October 1, 2013

Harold and the Pouch

Things have taken a turn for the better. I feel stronger. I am focused on what I have, not what I have lost. And what I have is HOPE.

The shift emerged in a rather unusual way. In a desperate attempt to eat, with no appetite and bouts of nausea, I tried medical marijuana hoping it would help. It didn't, but it was fun. Then, in the middle of my high, I had a "leak." A leak is when your "output" oozes out of your ostomy bag.

Luckily my daughter Ling was with me but she had yet to meet my ostomy bag or my stoma.

A stoma is part of your small intestine. When you have an ileostomy (which I have), the surgeon makes a hole in your stomach, pulls part of your small intestine out of it, and loops it into a little red, active volcano of sorts.

not my stoma
photo courtesy of Stephanie Shaner

From day one, I had a difficult time adjusting to my stoma and the ordeal it created. Everything about it was challenging - the appearance, the functionality, and the labor intensive care.

Changing the bag is still awkward for me. There is measuring and math and cutting and cleaning involved. There are powders and adhesives and the whole time you're working on it your stoma is actively at work - gurgling and erupting.

With daughter at my side, we both failed miserably at cutting, and after lots of spills and giggles and illogical errors and moments of mindlessness, we were down to one bag (at $5.00 per bag).

Before we attempted to cut the last bag, I talked to the stoma - told it to calm down and it listened. Then we laughed some more before getting down to business. Somehow we got the bag in place, with a solid adhesion to my skin.

I woke the next morning panicked, realizing I had no remaining bags and didn't know where to get them. The solution was simple, I googled ileostomy care and found dozens of medical supply companies. I called the first ad I found and when I rambled to the operator about how much I hated my bag she listened, asked me why, and then suggested samples of other products.

Two days later it was here - my new ostomy bag. It's adorable. I now feel like a kangaroo with a cuddly pouch instead of man with a long, limp dick dangling down my thighs.

Note the comparison...

My appetite improved on day one. The pouch is flesh toned, you can't see your stoma or what it's producing. The original, elongated bag has a clear front. You can't escape the visual remnants of your last meal.

Some people give their bag a name but I think that's silly. It is, after all, just a bag - or in my case a pouch. But I have named my stoma. My stoma's name is Harold. I named it after my father (his name was Roger but I called him Harold - makes no sense, I know). My father was notorious for making loud, inappropriate noises at awkward moments and so is my stoma. However, my new pouch has calmed Harold down. So far, if he's acting up, I don't hear him.

I honestly thought, with the "old bag" I'd never leave the house but now that I have my pouch, I feel liberated. It's easy to change, clean and hide.

And here is the best kept secret about having an stoma - food doesn't stay in you long enough to absorb all the calories (or the nutrients, sadly) so you eat 100% guilt free. I've lost 20 lbs in 3 weeks. I'm starting to wonder if the painfully thin, fashionista women in my town are all secretly sporting stomas. I'm starting to wonder if I won't want a reversal after I'm done with chemo.

From the How to Care for Your Ileostomy booklet supplied by my doctors office, I've been given this important information:

Do NOT have sex with your stoma. 

That statement had me mystified. What sick fuck would want to fuck a stoma? It was the first question out of my mouth when I saw my doctor, post surgery.

"Why did they have to put that in print?" I asked.
"Because people have tried," my doctor replied.

Apparently, it's a fetish. Please tell me none of you are into stoma fucking. And if you are, rest assured, this is my final stoma post. Harold and I will live the rest of our lives, privately and (thanks to the pouch) discreetly.

This is yet another challenge I have conquered. My will and heart prevails.

xo, MOnkeyME

For a complete list of my ridiculous journey through cancer see CATSTIR

Sunday, September 22, 2013

What's Left of Me

MonkeyGurl and MonkeyME 
walking the hallways at Johns Hopkins Hospital

I understand why they say you lose friends along the way because you're not the same person you once were.

I am not alone. You are here and I am grateful. But I want you to see all of me - what's left of me.

I am sad. I am withdrawn. I can't stand up straight. I can't breathe deeply. I can't drive, or take my dogs for a walk, or go to the grocery store, or do errands unassisted like normal, healthy people do. I can't work. I can't lead. I don't feel sexual, or comical, or witty, or engaging. I am weak. I am fragile. And I hate this me - what's left of me. 

Somewhere between my rectum, and my sigmoid, and the lower anterior of my colon, must have been my creative edge, my will, my drive, and my sunny side, because they are gone. I can't focus my eyes. I can't calm my mind. I can't sooth myself.

I know that this is temporary but it's important to honor where I am and what I am feeling if I'm going to grow from it. It's important to be honest with myself and I don't want to bullshit you. You don't deserve that. I don't deserve that.

I have good news. Marvelous news! My pathology report showed no evidence of cancer. Twenty-six lymph nodes were taken and tested and all were clean. Which means, the radiation ate my cancer. It also means I didn't need the surgery but we wouldn't have known this for certain had I not had the surgery.

This time there were no mistakes, I followed my gut and it brought me to a place of healing. Having the internal, high dose, radiation (available only at Johns Hopkins) was the right decision. Having Dr. Susan Gearhart perform my surgery was the right decision. And having the surgery was the right decision because of the knowledge that it gave me.

I now have a 12 inch scar that stretches from just above my belly button to my pelvic bone. I have a stoma - part of my small intestine peaking out from the middle of the right side of my abdomen. I am now missing more body parts than Miss Pegged. This is a game we have played since we first met. And now, finally, (thanks to the lymph nodes) I am winning.

I go back to Baltimore on the 17th of October for a followup and more tests. It's hard to feel cancer free when the need for tests continues. They'll test my lungs and my pelvic area to see if they're still clean. And the worry and the wait will begin again.

I watched the Valerie Harper documentary the other night showcasing her fight against brain cancer. Her will is undeniable. She sees the goodness in everything, even her cancer. I am not there yet and I'm not certain I ever will be. What I heard in that documentary were the facts - you thought you beat your lung cancer but you didn't. You had three years off for good behavior before it moved on up to your brain. Your fucking brain!

It always seems to move up, like it's been promoted. In time, mine will likely move on up to my liver, or my lungs, and I guess, if I survive that, it will move on up to my brain. There is no beating cancer. It's too fucking powerful. All I can do is endure the surgery and the treatment and be thankful for more time.

Cancer will not fool me. My doctors aren't fooled. That's why I will begin chemotherapy in a few weeks - my best bet at stopping the microscopic cancer cells from marching onward, upward.

The bag sucks. It's worse than I thought. I won't get used to it. I won't adjust to it. I'll tolerate it and celebrate the end of it. The next six months will be a lesson in patience, in resilience, in resistance.

I didn't know how I was going to end this because you know how I love to end a post with something uplifting. And then I remembered a story a friend (Sandy - sweet Sasha's first Momma), shared on facebook.

It is a poignant reminder that love beats cancer, not because it cures it, but because it outlives it.

xo, Monkey ME

Monday, September 9, 2013

My Swan Song

This is my Swan Song - a celebration of my final days with a wrecked-tail on Gay Head Beach in Martha's Vineyard.

Most important to me in this moment is embracing and giving thanks to my body regardless of the lumps, bumps, bulges and scars.

If in the end I am cancer free, then it will all be worth it.  

Surgery is scheduled for 7:30 tomorrow morning. I will ask Monkey Gurl to update you with a comment here and I'll be back as soon I can.

I so appreciate your love, guidance, and gentleness.

xo, MonkeyME

Thursday, September 5, 2013

My Happy Place

With less than a week before my scheduled, September 10th surgery, we are in Menemsha - a small fishing village on the island of Martha's Vineyard. It is so remote here that our GPS only picks up water. Relaxed...with minimal amounts of clothing, no makeup, and no jewelry unless you count lobster claw, rubber band rings, and turkey feather hair adornment - I am in search of guidance, surgery vs the "wait and watch" approach.

Settled into a private, one bedroom, rustic cottage with a full kitchen, fireplace, and a porch overlooking the ocean, we are happy here and our dogs, Sasha and Lucy, are over the moon!

There is a family of wild turkeys living around us. These are the dumbest birds I've ever seen. When chased, they run in different directions, change directions, bump into each other, and fall down. At first I thought they were reenacting "serpentine" perfected by Peter Falk and Alan Arkin in the classic comedy, "The In-Laws." Then I realized they were just, plane, dumb.

Lucy made friends with two, elitist llamas and a gang of colorful chickens that live just beyond a field of wild flowers that boarder a crystal blue ocean and shell crusted sands. Sasha now prefers sleeping under the porch, covered in spider webs, instead of on our king sized bed, and when awake, roams freely in search of bunnies and squirrels. I don't know how to tell them that we will soon be back in Baltimore (should I choose surgery), amerced in the faux quaintness of an unkept city or (should I choose "wait and watch"), trapped in a tangled, suburban web of leash laws, leaf blowers, and chemically treated lawns that we, reluctantly, call home.

There is no cell phone coverage here and limited internet service, and I like that. This and the wind and wine forces me to slow down.

I don't know why we can't just stay here - if only money didn't matter and there was no such thing as cancer.

What we wake to each morning is the clang of buoy bells, timed perfectly with deep throated moo's from the neighboring farms cows and an echo of caw's from a menagerie of island birds.

We have not been on the island of Martha's Vineyard since our honeymoon - 11 years ago. This is also where Mark SHOCKED me with his wedding proposal, a year earlier, over lobsters and champagne on a deck overlooking Edgartown Harbor. To say I didn't see it coming would be an understatement. At the seasoned age of 42, he was the classic, eternal bachelor - with not a care or kid to his name. His presentation of a tightly bowed tiffany box, left me speechless for almost three days.

This vacation, planned meticulously by my husband, is his way of showing me that he will always be by my side.

Early this morning, we took a precarious walk down a pathway littered with boulders and weathered tree roots, through thickets of sloppy marsh, into the center of town where we were first in line to order lobsters.

While here, I took advantage of the limited menu and also bought lobster bisque, lobster mac and cheese, lobster dip, stuffed clams and clam chowder. If I proceed with surgery it will be a long time before I can dine on such delicacies, so I am savoring every bite.

On our first night, with flash lights in hand, we wandered fifty yards down a dark, gravel pathway to The Beach Plumb Restaurant. Pleased to know in advance that this was a dry town and therefore BYOB, but stunned to learn it was recently revamped into a "farm to table" concept, which meant that, earlier that same day, I met and photographed pending entree's.

The menu was sparse and ridiculously overpriced. As a main course, they ran out of beef and subsidized it with a choice of fish and beans ($38.00) or chicken hearts with pickled beets ($28.00). I asked if I could have the whole chicken, minus the heart, and was abruptly told they ran out. As for the "fresh catch of the day," charging $38.00 for fish in a fishing village is like charging $20.00 for a potato in Idaho.

I elected to have an appetizer of stilton cheese ($17.00) served with vine ripened tomatoes ($12.00) and a baguette the size of my husbands middle finger ($4.00) - I know this because I measured it.

Later that night, I got a bug bite on my right noob and couldn't stop talking about it. I have not felt anything on my chest since my double mastectomy. I now fantasize about crisp night air causing unfathomable, nipple erections.

I love that writing is so endearing to me that I make it a vacation priority. I love knowing that when pain and uncertainty eclipses my sanity, I will medicate with memories of this happy place.

Thank you for reading. Time for more lobster.

xo, MonkeyME

Thursday, August 29, 2013

Mass Confusion

Mass: a collection of incoherent particles, parts, or objects regarded as forming one body

Confusion: lack of clearness or distinctness; bewilderment

Despite my angst, I slept last night. Melantonin, an herbal supplement that helps regulate sleep, washed down with a chaser of tears, did the trick. As I drifted off, I asked my son for guidance. "You can talk to him anytime you want," the psychic John Edward once told me, "You don't need me to do that."

He didn't come. Instead, my first boyfriend, Peter Wolff appeared. Peter is a cop in real life. We have been friends since summer camp when, as young teens, we kissed, cuddled and chased each other across a 31 acre island inhabited with thick marsh, mixed forests, and sandy beaches. Here, Peter taught me how to sail and I taught him how to dance. Together we experimented with love - mixing tears and fears with bouts of unfiltered joy.

Throughout the years and I have always respected his honesty and sensibility so his vivid, ephemeral, visionary guidance was met with open arms.

In all his wisdom and grandeur, he stood in front of me, in complete uniform, and said, "You know what to do."

Honestly, I don't. I don't want my decision to be fueled by fear. The easy way would be to have the surgery, and to know the pathology, but if I have a complete cure response from the radiation why would I do that? Especially if I believe, which I do, that surgery spreads the cancer.

The problem is that my tests do not show definitively that I have had a complete cure response - meaning the cancer is gone. The tests are leaning in that direction but it is too early to tell. The radiation needs more time to take affect. "A few" lymph nodes were detected on the MRI which could indicate the disease is spreading or it could simply be the result of inflammation from the radiation.

My PET shows no cancer but a PET won't detect positive lymph nodes because they are too small. My CEA blood count is within normal range - this is another tumor indicator for patients with colorectal cancer. My CT and MRI show some rectal wall thickening that again, could be the result of the radiation.

If I listened to Memorial Sloan Kettering, based on a chest CT that showed a few sub-cenimeter masses, too small to biopsy or light up on a PET scan, they would have treated my lungs first with 4 months of chemo before treating my wrecked-tail. So, starting chemo ASAP and giving my tail more time to respond doesn't sound illogical. But I'm flying solo. I have no clinical data to support this.

As I mentioned in my past post, there are studies that show a similar reoccurrence rate (after two years) in patients that did not have surgery vs and those that did, but this was after they received EXTERNAL radiation with chemo. The primary roll of chemo, given before surgery, is to weaken the tumor and make it more susceptible to radiation. I can't find any data on people who had INTERNAL radiation, without chemo, and opted out of surgery. It makes sense that the external radiation kills more good and bad cells than the internal radiation does, so if my lymph nodes are involved they would remain out there, on a path of search and destroy.

When I was diagnosed with stage 0 breast cancer, against my doctors advice, I listened to my gut and opted to have a double mastectomy instead of a lumpectomy, radiation and 5 years of tamoxifen (a preventative drug). My final pathology report showed more cancer in the breast tissue than was originally detected so I know I made the right decision.

This is a completely different game. This time what I hear in my mind, are passages from The Scalpel and the Soul written by Dr. Allan J. Hamilton, a Harvard-trained brain surgeon.

RULE No. 20: There's no surgery like no surgery 

Surgery remains the "court of last resort" when less invasive and less dangerous medical therapies will not work or just fail. So when should a person consent to having surgery? One of two circumstances has to be met before proceeding with an operation. First, is your life in direct and imminent danger? The second is trickier. Ask yourself: Is my lifestyle seriously threatened without surgery?

Only I can know how I want to live. And only I can know how much I'm willing to risk to live the life I want.

Your love gives me strength. 

xo, MonkeyME

for a complete list of my ridiculous cancer journey click HERE

Saturday, August 17, 2013

The Races

I'm running out of wellness time. It's hard to wrap my head around cancer when I don't feel sick. The side effects from radiation are gone. I feel good, really good.

I have been living out of a suitcase all summer - jamming as much fun time in as I can. Right now we are back in Saratoga Springs, New York for the Alabama Stakes Race. I'm feeling lucky and there is a pack of 3-year-old fillies waiting to show me what they've got. My technique is simple, I watch them exit the paddock and one by one they check in with me. Some are frightened. Some are confused. Some love winning.

Yesterday, we strolled into town and after several cocktails, found the perfect Halloween costumes for the dogs.

Next week we are going back to Johns Hopkins Hospital in Baltimore, Maryland for preoperative appointments and more tests. This is when I find out how responsive my tumor was to radiation.

I have been visualizing a "complete clinical response" (cCR) to the high dose, internal radiation I received in July. If this is the case, I am considering nonoperative management - meaning saying NO to surgery.

Obviously, this would be very controversial and I won't be able to get any of my medical team on board, but that doesn't deter me from arguing my case.

Earlier this month, at the annual meeting of the Society of Surgical Oncology, two surgeons discussed nonoperative management vs surgery in patients with stage I to III rectal cancers after a cCr from the standard chemo/radiation therapy was achieved. Their findings suggest that the disease free survival rate is similar in both groups, which leads me to question if surgery is necessary.

Of course, right off the bat, I don't fit into either catagory because (by choice) I did not receive the "standard" external radiation and chemo. The internal radiation treatment I did receive is highly effective for treating the tumor itself but it does not reach lymph nodes outside the rectal wall.

And, although there are strong indicators, the only way to be 100% certain the tumor is cancer free is through pathology.

Whether or not I have positive nodes is unclear. The best way to detect them, pre-surgery, is through a pelvic MRI which has a 75 to 80% accuracy rate. The MRI I received at Johns Hopkins in June showed no positive nodes. The MRI I received at Memorial Sloan Kettering, two weeks earlier, showed 2 to 3 positive nodes.

I had no problem choosing surgery when I was faced with my breast cancer, because it was a matter of body image NOT body function. But this is a horse of a different color, a completely different race.

I am convinced that my horse whispering technique is better at predicting a winner than medical science is at finding my cure. Today, I'm tossing all the odds out the window and listening to my gut.

xo, MonkeyME

Twenty Rules to Live By
(as it relates to illness and treatment)

from The Scalpel and the Soul by Allan J. Hamilton, M.D., FACS 

Rule No. 1: Never underestimate luck - good or bad.
Rule No. 2: Find a doctor who cares about you. 
Rule No. 3: Never trade quality for quantity of life. 
Rule No. 4: Live your life with death in it. 
Rule No. 5: You cannot dodge a bullet with your name on it.
Rule No. 6: Ask your doctor to pray with you. 
Rule No. 7: Never believe anyone who says, "Nothing will go wrong." 
Rule No. 8: Don't be turned into just another patient. 
Rule No. 9: Listen to your favorite music.
Rule No. 10: Never let hospital rules interfere with patient visiting hours.
Rule No. 11: The will to live is yours. 
Rule No. 12: Develop your own healing rituals.
Rule No. 13: To heal quickly avoid negative influences. 
Rule No. 14: Don't let growing old make you crazy. 
Rule No. 15: Never be dissuaded from alternative medicine. 
Rule No. 16: Never let a doctor determine your dignity. (broke it)
Rule No. 17: Never let a doctor constrain your outcome. 
Rule No. 18: Always ask a doctor what he or she would do. (but will they be honest with you?) 
Rule No. 19: Assign someone to be your guardian angel. 
Rule No. 20: There's no surgery like NO surgery. 

For a complete list of my ridiculous cancer journey CLICK HERE.

Sunday, August 11, 2013

Heart Open

Sasha, my beloved "Berner," has two distinctive markings - a peace sign on her forehead and a cross on her chest. She is the most soulful creature I have ever met. "It's like living with a dolphin," I often say. There is something about her eyes and her steady, methodical grace, that instills a profound sense of peace and wellness. Not just for me, but for all those who walk with their heart open.

When I worry about how long I have left (this often happens in the dead of night), I remember that Sasha, who is 5 years old, has an average life span of only 7. Will she outlive me? I hope not. I don't want her to look for me. I don't want her to think I've abandoned her. And selfishly, I want her to greet me on the other side just as joyously as she does whenever I walk in the door.

When asked...

Are you dying?

To that I say...

Not today.

And if that's not enough I remind them that...

We are all dying.

When trapped in a state of fight or flight, Jesse, a root connection friend, responded by saying...

It's a lot to face, and I know you're strong enough, even if it feels like that isn't the case, when you're face-into it. 

Your life won't be the same but how often has your life changed dramatically? You are one of the few who really makes something good of all the challenges, and so many people grow along the way. 

Remember when we talked about the broken water pot that the Chinese man carried? You, me, The OE's (our burning man family)... we are all cracked pots, and we water the little flowers along the way without knowing it. Life is so colorful where you pass by!  So... Green

I'm going to wear that. I'm going to own that. I'm going to carry that with me into surgery and into my healing. 

I love my friend Jesse. 

I love Sasha.

I love. 

xo, MonkeyME

The complete, ridiculous journey can be found HERE

Friday, August 9, 2013

CRAZY kind of Love

There is a new kind of crazy going on and it has reached epidemic proportions. It's called Dog Crazy. Somehow we went from casual dog owners to vigilant, self righteous, pet owners extraordinaire.

Collectively we have redefined loyalty. Some of us are more devoted to our pets than our pets are to us.

Take for example "George," a 2-year-old Labradoodle (half labrador, half poodle). I said hello to George's owner in the park the other day as he (the owner) regally sat in freshly mowed grass with a plushy chew toy in hand.

"Fetch," bellowed George's owner as he tossed the toy towards the late day sun. George wanted no part of fetch and was clearly happy just to rest in the shade.

I stopped long enough to pet George and comment on his ultra soft, cinnamon colored fur.

George's owner quickly corrected me, "George's HAIR is mocha, NOT cinnamon." I then got an unsolicited seminar on George's 6th generation pedigree line.

This is not the first time I insulted an owner on the color of their dog. A few years back I spotted famed children's author, Rosemary Wells, walking her West Highland Terrier, Sofie. Over the years, Rosemary has featured many of her westies in her books. During my daughters preschool days, Rosemary's "Bunny Planet" books were some of her favorites.

"It must be hard to keep her clean," I remarked as I admired Sophie's silky white coat.

"Well..." huffed Rosemary Wells, "at least I KNOW when she's dirty."

Pointing in disgust at Miss Lucy, my black, tuxedo Shih Tzu, she continued, "If you took the time to bathe your dog you'd see she's filthy."

Somehow I had unwillingly embarked on a racial war of words.

Today, at our neighborhood park, we met Chowder. Chowder was romping freely through the field with his owners, a dad and his young son, closely in tow. When Chowder spotted Sasha, our 95 lb Bernese Mountain dog, he quickly galloped up to greet her.

Based on Chowders size and color, my dog sense thought he looked part Golden Retriever, part Great Pyrenees.

Weary of inciting yet another racial war, I said, "what a handsome" (not wanting to assume that Chower was a boy).

"He's a Golden Retriever," said Chowder's dad, "but my sister insists he's part Great Pyrenees."

"I can see that," I hastily agreed.

"Well," he added, "my sister's an idiot. I paid a LOT of money for this dog and he comes from a great line."

Really? This time, clearly, I was set up.

Until our recent addition of Sasha, Miss Lucy was hand fed. We started this because we worried that at just over 5 pounds, her tiny size was due to lack of nutrition. That and she hates getting her chin and ear hair stained with kibble. When people remark on how small she is, I joke that, like the fables involving young asian females, we bound her little puppy paws with bandages to keep her from growing. And then I watch the horror come over their face.

Yet Beauregard's owner, who we also met this afternoon, easily out trumped me when, from his super-sized cell phone, he showed me video of Beau Beau, his 11 year old Lhapsa Apso, being fed his breakfast - at the kitchen table, with a bib on, from a silver plater, with the aid of a spoon.

"Sometimes Beau wants me to feed him and other times he wants my wife," boasted Beau's dad - a commanding, tattooed titan with a thick, portuguese accent.

"How do you know?" I ask.

"If he doesn't want you to feed him, he won't eat," insisted the proud papa.

I then watched video of Beau barking excessively.

"We taught him swear word from our country," bragged Beau's dad, "He learns so quick."

What I heard was "WOOFAH, WOOFAH, WOOFAH," but Beau's Dad hears "FODA, FODA, FODA," the portuguese word for FUCK.

What I did witness was Beau taking care of their 6-month-old daughter. While the baby lay on a colorful, cotton quilt, Beau obediently sat by her side. When the baby's squirms caused the blanket to fold, Beau quickly used his paws to flatten it out.

I watched in amazement as Beau did this time and time again.

"That is his job," insisted Beau's Dad, "He loves taking care of the baby."

But what was most remarkable about Beau and his owners is that, despite a history of being aggressive, they adopted him at the age of 9. Shortly there after he bit his owners, numerous times, and their vet insisted they put him down.

"We refused," said Beau's dad. "We just kept showing him love and look at him now."

Clearly they had not only saved Beau's life but they transformed him into a peaceful, proud, happy, little fellow.

I feel that, in many ways, my dogs have transformed me.

Some taught me loyalty. Beginning with Bosco, a pitbull with a heart of gold that we rescued back when I was pregnant with my daughter and then Bogie, a stoic pug with a blind eye.

Bogie's son Brutus, who was nothing but trouble (beware of what you name your dogs), taught me patience.

As did Mylo, an unruley rat terrier discovered roaming wild on a Georgia highway.

Miss Lucy and Sasha feed my ongoing need to nurture. They have steered me away from a self centered world and taught me how to focus on goodness. These devoted, constant companions cause me to rise each morning with a smile. Together we step outside with a sense of wonderment - walk into our day with joy in our hearts.

xo, MonkeyME

Monday, July 29, 2013

Let it Ride

I walk a fine line, balancing what to tell and what to hide.

At first, I didn't want to tell you about my lungs. I am ready to now.

One June 19th (my father's birthday), I had a chest CT scan at Memorial Sloan Kettering. A week later I was told that I had several small, bilateral lung nodules that were too small to biopsy.

A few days later I met with Dr. Karyn Goodman, the top rectal radiation oncologist at Memorial Sloan Kettering, who mapped out their plan for me - four months of chemo, aimed at treating my lungs, followed by six weeks of chemo and external radiation to treat my wrecked-tail.

I told her no thank you - that I wasn't interested in treating something that might be. I also didn't want to walk into surgery with a compromised immune system from months of chemotherapy.

Johns Hopkins reviewed the same CT scan and said that ultimately, the decision was mine. That the findings could be metastasized cancer, or not - at this point there was no way of knowing for sure.

My gut was confused. My heart was begging for mercy. My spirit was broken.

Dr. Munster, my dreamy radiology oncologist at Johns Hopkins, needed to confirm my decision to treat my wrecked-tail first, before I submitted to the pre-radiation, MRI torture chamber, where I had the mental breakdown I wrote about a few posts back.

As he prodded for clarification, I could see the truth painted plainly on his face - layers of uncertainty and concern.

The black and white of my prognosis isn't pretty. If, after surgery, the surrounding lymph nodes come back clean (free of cancer), then I am awarded 10+ years to live. If it's in my lymph nodes, I'm given 5 years. And if it's metastasized, then I only have 12 to 14 months to live and I imagine it won't be a pleasant year.

Lying there, alone in the tube, with a vessel up my ass, all I could think was, I'm fucked - royally fucked.

I tried my best to focus on the positive, knowing my son would be waiting for me. But I'm not ready to leave yet. I need to laugh, learn, and love more.

Besides, I am certain I can't finish my book in a year. At this point, I'm having a difficult time just sitting in a chair.

Even so, the side effects of the internal radiation are tolerable mainly because this is MY treatment of choice. Instead of a bevy of undesirable secondary effects of standardized treatment that range from incontinence to vaginal stenosis (a "common problem experienced by women undergoing pelvic external radiation"), where my vagina permanently closes itself off, every morning I suffer through hours of what I describe as intense labor in an attempt to deliver yesterdays meal.

But my energy level is good, and my attitude is good. My agonizing morning birth is helping me to accept and welcome my imminent colostomy bag.

I've been out and about. I went to a concert in Central Park last week with my husband, daughter and friends. It rained hard and I lifted my head to greet it - drank it right in.

Later in the week I visited my mother in Vermont. I'm convinced that if we had more time together, she alone could heal me. There is nothing more comforting than a mother's love.

Afterwards friends joined my husband and me in Saratoga Springs, New York and we played the ponies at the racetrack.

In the third race I bet on Mass Destruction to win and he came in dead last. For my final bet, I let it all ride on Palace Malice and he won.

My strategy has always been to watch the horses head out of the paddock and wait for the impending winner to reveal himself to me with a nod, a wink, a flick of the ears, or a buck. But this time, their only gesture was to gaze knowingly at me. One calmly weeped. I didn't bet on him because his tears confirmed he wasn't betting on me. 

Last Wednesday, a month after my initial chest CT scan, I had another at my local hospital and the results are promising. This time, only one small (5mm), smooth, nodule was noted in the right lower lobe, representing nonspecific findings. Based on my history, follow up is recommended but if a cancer free person received these results, their medical professional would expect it to be of no concern.

This invites calmness and a great sense of hope. Today, I'm betting it all on me.

xo, MonkeyME

For a complete list of my ridiculous journey through cancer see CATSTIR

Thank You For Encouraging My Joy of Writing

Thank You For Encouraging My Joy of Writing

Shannon E. Kennedy


Photo by Joan Harrison