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

Radiation Complete!

"Your day has come to strike the bell, 

Your silent heart has much to tell.

And much to toll this proud new day,

Treatment done, you're on your way."

By, Mary Kathleen Adcock, 

who battled stage IV tonsil cancer and is now in remission

Pappy and Monkey Me ringing the Bell - signaling the end of radiation treatment

I am home now, having completed four consecutive days of high dose, internal, radiation treatment at Johns Hopkins Hospital in Baltimore, Maryland.

I have learned that, despite what your grandparents told you, laughter is NOT the best medicine - propofol is. But laughter does ease the humiliation.

It's amazing how quickly I became accustom to popping valium at the crack of dawn, repeating my full name and date of birth after every third breath, freely admitting to my weight (my real weight), being entertained watching my veins stuck and flushed and tracking the pain medication as it dripped, ever so slowly, into my IV, and having vessels, fingers, and rods shoved up my ass.

That's not to say that I was enjoying the ass experience. In defiance, I started eating crackers in bed. And drinking before noon, because I quickly realized that one valium and one glass of wine was better than two valium. And then my dear friend Ricki insisted they start giving me drugs intravenously. And when I told them what Ricki said, they listened. And Ricki was right. It made a world of difference. I still wasn't able to willingly submit to being sodomized, but I was now able to balance bouts of off-color humor between winces of pain.

And everyone, and I mean everyone, laughed at my jokes. Even when they made absolutely no sense because they understood that humor was how I coped.

Towards the end of my treatment, I apologized to the tiny, female, Asian technician that I verbally abused during the MRI situation. She smiled politely, as though she had no memory of my inappropriate behavior.

Even though the radiation treatment did not go as smoothly as I had hoped, not once did I question my decision to receive treatment at Johns Hopkins.

It is important to treat the entire person, not just the cancer. Each cancer is unique, just as each patient is unique and both need to be addressed.

Unfortunately, my vast experience with doctors and hospitals has, in my mind, qualified me to write a medical version of Zagats. Because cold, emotionless, sometimes slimy, FISH FACE is often the norm, especially in large institutions such as Memorial Sloan Kettering, I will use "fish" symbols instead of stars or diamonds for my rating system.

In my medical version of Zagats, you don't want to see a fish by your name. For example, if you were to look up DICDOC (head plastic surgeon at MSK), you would find enough fish to fill an olympic sized swimming pool. You wouldn't have to read the review, you could smell it.

Out of the dozens upon dozens of staff members that I encountered at Johns Hopkins, only one person, a receptionist in a scheduling department, received a two-fish rating and when I complained, she apologized and assured me that I caught her on a bad day.

My radiology oncologist, Dr. Munster, and his attractive (but not annoyingly so) physician's assistant, Marsha Marsha Marsha, were my immediate go to people. Even when they were not physically in the room with me, I knew they were, and remain today, easily accessible. Their devotion, time, talent and willingness to treat my total being brought me comfort, clarity, and most important... HOPE.

I feel it's important to stress this because my last post may have suggested that I was unhappy with my care. Sure, it would have been great to be knocked out cold the minute I entered the hospital lobby, but I suspect this is impractical on many levels.

After my MRI meltdown, I discussed what would have made my situation more tolerable, and what set me over the edge, and both Dr. Munster and Marsha Marsha Marsha, listened attentively.

1. The no iphone docking capability, which destroyed my UP THE ASS playlist coping mechanism, was simply a misunderstanding.

2. The unknowingness of the precise technique and uncomfortableness of the MRI, was primarily the result of my reality break-down. I can only digest so much medical information before I reach a point where I am overwhelmed and mentally shut down.

3. Dr. Munster agreed not to incorporate "dreamy eyes and voice" when trying to get me to agree to something - in this case granting the baby faced residents a front row seat at my probing. But I get it. I get why he wanted them there. This is important work and he is their pioneer. It's also difficult to understand the depth of my vulnerability considering my assertive, often twisted, extraverted, personality.

Some of the things that happened inside the treatment room were traumatic and others were comical, but I will not go into great detail now out of respect for the study and it's importance in treating advanced rectal cancer. My hope is that one day, in the very near future, high dose internal radiation will become standard care.

I will say that, with my situation, a one hour scheduled radiation treatment turned into a three hour ordeal when, despite everyone's best efforts, it became difficult to align the radiation antennas to the "golden seeds" because my tumor, shaped somewhat like a slab of sicilian pizza, reacted to the radiation by folding into itself - creating a thicker mass which made the vessel insertion laborious and, to complicate matters more, the relentless probing (oh the joy) moved the tumor up the rectal wall.

I think it (the tumor) was scared. I think the fucker knew it didn't stand a chance against high dose radiation.

This meant Dr. Munster and/or Marsha, Marsha, Marsh, needed to insert, retract, and reinsert the vessel over a dozen times. And my male Asian technician, who I initially mistook for being meek and mild mannered, was unwilling to proceed until the alignment was "PERFECT."

In between vessel insertions, Dr. Munster attempted to maneuver the tumor back into place with his finger. In an effort to judge the distance from the anal verge to the tumor, Dr. Munster measured his index finger. I now know the exact length of Dr. Munster's fingers (8 inches). I assured Dr. Munster that that's nothing to be ashamed of and that some say the nose is a true penis size predictor (he has a tiny nose).

At one point, Dr. Munster had his finger so far up my ass that his thumb hovered directly above my clitoris. After I informed him of this, in his very best professionally voice he answered, "I am aware of that Ms. Kennedy." I was thrilled to finally see him blush.

With all of this now behind me (pun intended), I am pleased to report that I have stopped eating crackers in bed and drinking before noon. The side effects are tolerable, my energy level is almost normal, and I still don't look sick. A bit tired perhaps, and chubby, but not sick.

My next big step, after a few more tests, is surgery. It is scheduled for September 10th. Until then, I will focus on glorious, fun filled, summer days surrounded by those I love.

xo, MOnkeyME

Me and Dr. Munster 

(Notice that the picture is blurry.  Why???  Because a resident took it!)

As part of my cancer treatment Johns Hopkins gave to me....

FIVE... golden seeds, 

four days of radiations, 

three forms of medication, 

too asian technicians, 

and a GIANT vessel up my ass....

(I have got to get the Christmas tune out of my head.)


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

The Voyage

A recount of the simulation preparation to begin my radiation treatment.

In short, the voyage was catastrophic. I knew it wouldn't be pleasant, but nothing could have prepared me for the surge of physical and emotional agony that crashed into me.

I still can't talk or type about it without crying. So much so that my laptop now makes a Snap Crackle Pop sound that I suspect is the result of tears spilling into the keyboard.

I am ashamed to tell you that I behaved like a child, or more precisely, like a spoiled, toddler of two. My tantrum included kicking, screaming, crying, and pouting. At times I closed my eyes tightly and refused to answer questions or acknowledge anyones presence. I was angry. I was in pain. I was frightened. But mostly, I was beaten.

It was NOT a day to live in the NOW. It was a day to focus on medication and imagination. And so I set forth a plan. I built an UP MY ASS Playlist - songs suggested by family and friends - and mixed it with a double dose of valium. I also shaved my legs and had my first brazilian waxing. If nothing else, I would arrive well-groomed.

I was convinced that, with the aid of these three things, I could work my way through it. I would visualize myself on a tranquil, Caribbean beach interacting with friends and family that sent me their love via songs. And I had a secret weapon. I was bringing my son Kerry with me. I talked to him about it during numerous sleepless nights leading up to the procedure, and he agreed to meet me on the beach.

And then everything went horribly wrong.

To my surprise and chagrin, this is what awaited me inside exam room 2A ... 

 

An old school, tightly enclosed, MRI machine with some sort of no-joystick fixated in the center of the table.

I immediately popped my second dose of valium (no water required) and focused on the pillow.

I was then informed that internal MRI coils would be part of the simulation. For those of you who have ever had an MRI, imagine claustrophobic panic combined with banging, buzzing and clanging, erupting INSIDE of you.

There was a team of eager eyes standing by - Dr. Munster (code name), two technicians, one nurse, and 5 fucking residents.

I hate residents. I don't care how irrational that sounds. Residents are the reason my breast cancer reconstruction went horribly wrong. Residents are nerds. Most residents aren't even in the department they want to specialize in. They are just going through the motions.

These residents looked younger than my daughter (age 22). These resident looked more nervous than I did. These residents wore thick black glasses, uncomfortable smiles, and wrinkled clothing. They didn't even advance to a level where they'd earned a white lab coat.

"Get them OUT!" I ordered.

And this is when I made mistake number one.

"Please," begged Dr. Munster, "this is, after all, a teaching hospital."

I really like Dr. Munster and not since my teenage daughter's Christmas wish of, "I don't want a boyfriend, all I want is a puppy," have I heard a more compelling plea.

So I let them stay.

"Thank you," responded nerd number one - the shortest and geekiest of the group.

"Go fuck yourself," I responded.

I forgot to mention that things got ugly inside that MRI room. In truth, I was worse than a terrible two year old. I was an obnoxious, belligerent, beast.

Both white coat technicians were Asians. One was a nondescript male and the other a tiny, frail looking female. Like a hawk in search of prey, she is the one I focused in on.

"Here is my iphone," I instructed, "it's keyed up to play my UP THE ASS PLAYLIST," dock it into your system and get it ready to go.

"I can no do that," she answered. "pray Pandora ladio."

"I don't want Pandora radio, I want my playlist!" I insisted.

There was no way of winning this argument and when I came to the realization that I couldn't listen to my playlist, my key coping mechanism, I LOST MY MIND.

It was at that exact moment that they rolled THE VESSEL into the room and I got my first glimpse of it.

In fairness, it's girth was smaller than I expected, but it's length was monstrous.

I'm afraid to show you. I'm afraid I'll lose you. But I can't help myself, so if you're already sweating, look away...

(notice the size of the sharpie in relationship to the vessel)

What made it even worse is that I was positioned on my back with nothing but a few towels under my legs. Call me crazy but the correct position should have been knees strapped behind my ears.

Lidocaine laced lubricant, combined with 10 mg of valium and 5 mg of ativan, was not enough medication for my body to submit to being sodomizing.

"Relax," ordered Dr. Munster.

"I pray music for you," said the lightweight, Asian technician. And then she put on smooth jazz.

"NO MUSIC!!!" I shouted.

"Pandora great, you pick song you rike, they pray it," she explained.

"I KNOW HOW PANDORA WORKS YOU...." I can't finish my vulgar statement. You'll never forgive me if you knew what I called this innocent creature.

At that point, in sheer horror, the residents scurried out of the room and a frustrated Dr. Munster leaned within inches of my face and stated with calm, commanding conviction,"Pick an artist NOW or I'll queue up elevator music."

"Old school rap," I answered.

And that was that. Next thing I knew I was alone in a room, encapsulated in a radioactive machine with a vessel up my ass, headphones on my ears, listening to Biggie, Tupac, Snoop, and Dr. Dre, serenade me on my very own private Carribean beach.

About 10 minutes into the procedure, "Dear Mama," by Tupac, came on. Dear Mama, is my Kerry to Mama song. I imagine him singing it to me when I'm feeling extra low. In that moment, I have never needed it more.

I have not cried that hard since the day my son died. Only this time, I cried because I knew he was with me. It was exactly as I had dreamt on the eve of Mother's day - the two of us on a beach with the water sparkling and the sun strong. Kerry looking uncharacteristically pirate-like. Kerry comforting me, assuring me that I was loved and appreciated.

No matter which way this cancer battle goes, I win.

xo, MonkeyME and Kerry

Thank you to everyone who suggested music.
I still have 3 days of treatment and I'm updating music as I go. 

For a complete list of this ridiculous wrecked-tail journey see:

CATSTIR

Fuck Cancer (this time I mean it)

SARATOGA JAZZ FESTIVAL 2013

Jazz fest seasoned veterans Jim Quinn aka JQJQ, and Allan

with Pappy and MonkeyME

For the past 14 years, during the last weekend in June, we have been attending the Saratoga Jazz Festival in Saratoga Springs, New York. This year was bitter sweet. It was my last hurrah before beginning my cancer treatment.

Jim Quinn, Allan and his crew - friends since grade school - have been attending the fest for over 30 years. We met them about 6 years ago when I spotted Allan's necklace - green Mardi Gras beads with a single wooden parrot earring hanging from the center. He wears that damn necklace every year.

The only present my father every picked out for me, was the exact same wooden parrot earrings that he bought at a sidewalk sale. What made his gift even more unique was that he deliberately avoided that sizzling summer, sidewalk sale and the crowds of impatient, impulsive shoppers that clogged otherwise unruffled streets.

I remember the smile on my fathers face as he handing me the earrings - tucked between layers of delicate, cloud-like, cotton fluff and encased in a small white box. "Open it," he ordered.

Every year, during spring cleaning, I search for those cherished, misplaced earrings. And at every fest, I try to talk Allan into giving me his. This year, I didn't try. Let's face it, I'm tired. This cancer crusade is exhausting and I was just happy to see them both, smiling.

And now, after one Jazz Fest, one colonoscopy, one endoscopic ultrasound, one sigmoid ultrascope, two CT scans, one PET scan, two biopsies, three MRI's and nine exams from four different hospitals, I am submitting myself, willingly, to the uncertainties of science. 

"You'll feel better once you have your plan in place," is advice seasoned cancer recipients will tell you (searching for a better word than "survivors" or "sufferers"). And it's true. For me, I didn't like any of the treatment options that were available until I discovered a study being conducted at Johns Hopkins Hospital in Baltimore, Maryland.

I held off telling you about it until I knew I was accepted. Turns out, due to my past melanoma's, I wasn't. However, my timing turned out to be perfect. The FDA approved the study less than two weeks before I walked in the door, so it is now considered acceptable treatment for advanced rectal cancer. But there was still one more snag - would my insurance accept this treatment as standard care? Turns out they will.

Now, instead of the "standard pre-surgery treatment" which consists of 6 weeks of external radiation, 5 days a week, combined with chemotherapy, 24/7 for 6 weeks, I will be undergoing something called HDRBT - High Dose Rate Endorectal Brachytherapy.

After weeks of preliminary probing and prodding, I am back in Baltimore to begin my treatment. Yesterday was step one - the insertion of (sing it with me) FIVE GOLDEN SEEDS (followed by four calling birds, three french hens, two turtle doves and a ....). These seeds are placed around my tumor and will guide the radiation. I want to know if I get to keep the seeds. Maybe mold them into something resembling a parrot earring.

I slept for almost 24 hours after yesterday's procedure. Today is my day off. Tomorrow I undergo more scoping and an invasive simulation to prepare me for four consecutive days of intensive, internal radiation.

I do not use the term "invasive" lightly. This procedure will involve the insertion of a vessel the size of an EXTREMELY well endowed male appendage, up my ass, for three hours. (Yes, you read that correctly).

Because my circle of friends are rather eclectic, I understand that half of you are cringing in horror at the thought of it, while the other half are wide-eyed and salivating.

I will be awake during this procedure but I will be packing a double script of valium. Even so, I cannot, for the life of me, figure out what I'm going to do during those three hours.

I'm told that while I'm lying there alone, with a non-vibrating vessel the size of a big mouth bass up my ass, I can listen to music.

So...what I need now is an UP MY ASS playlist. If you can each give me a tune, I won't feel so alone.

I'll be like, oh, Knocking on Heaven's Door, Froggy, suggested that. And then I'll think of Froggy's smiling face. Maybe I'll pretend to do a slow dance with Froggy. Maybe I'll imagine us laughing at how ridiculous this all is.

Thank you for loving me...

xo, MonkeyME

To get your very own FUCK CANCER shirt visit letsfcancer.org.

For my complete cancer journey visit CATSTIR.

PEACE

Today I am at peace with a lot of things. Today I decided I want to teach my cat to talk.

Today, three birds sang for me. I watched, in wonderment, as they fluttered around the flowers on my balcony. Happy, happy little birds - happy splashing in the bird bath and dining on morsels of rain soaked seeds.

I am overjoyed by the love that I have deliberately attracted into my life. I am extremely grateful for all your kind thoughts, your generous spirits, your higher beliefs, and most of all, your unconditional love.

I am not alone. I not alone in life, or in my struggles. I am grateful for Ezra.

xo, MOnkeyMe

More Ezra @ Teaching Cancer To Cry

"It’s being here now that’s important. There’s no past and there’s no future. Time is a very misleading thing. All there is ever, is the now. We can gain experience from the past, but we can’t relive it; and we can hope for the future, but we don’t know if there is one.”

George Harrison

Pirate Girl

On a sun drenched April afternoon at the French Quarter Festival in New Orleans, we watched a thirty-something women, packed into a pirate costume, parade a jubilant crowd during a performance at an outdoor stage alongside the Mississippi River's edge. She was playful, she was sultry, she was tipsy. As much as we tried to focus on the music, Pirate Girl stole the show. She zigged, she zagged, she twirled, she dipped. Eventually her intoxication level exceeded her limberness, and she fell down. And so my new favorite drinking toast was born, "Pirate Girl Down."

It's fun to say and the visual is slapstick at its best - buxom, peroxide blond crashes to the ground while her crinoline and skirt swirl up, her breasts pop out of her tightly corseted top, and her faux leather, thigh-high, stiletto healed boots point toward the sun.

I've been toasting to Pirate Girl a lot lately. Even with a wrecked tail, the memory still makes me smile.

In between cheers to Pirate Girl, I've been googling obsessively - looking for the slightest bit of hope. As I mentioned in my previous post, 4 out of the 5 blogs I found from women with wrecked tails, are now dead.

And then I found Lesley, aka Pirate Girl.

Lesley is feisty, fun, and adventurous. In 2008 she and her partner sailed around the world on their yacht (she's a real life Pirate Girl). She is my age (okay, she's a bit younger). She was born in England and has lived in Israel for the past 30 years.

In 2012 she was diagnosed with stage 3b wrecked-tail cancer. She's now on the other side of pre-adjuvant therapy (chemo and radiation) and also the surgery and she's doing just fine!  She's got a great attitude (attitude is everything). She's optimistic and grateful and I can't help but think.... if a Pirate Girl can do it, then a monkey can too!

Right now, I need to focus on what can and will go right, not what can go wrong. Right now, Pirate Girl is EXACTLY what I need. Pirate Girl won't let me feel sorry for myself. Pirate Girl won't let me stay down.

Lesley's blog is titled THE BOTTOM LINE - how clever is that! She also has a blog appropriately called, Pirate Girl, but her adventures are minimal and I must encourage her to tell me more tales of her riots and ruckuses on the open sea's.

So lets all lift our glass, or cup, or flask, or stein, to Pirate Girl... Pirate Girl NOT being down. Pirate Girl UP. Pirate Girl healing, thriving, living, loving.

xo, The Pirate in MOnkeyME

Monkey Me and Pappy

Early this morning, before the birds and the sun sailed, I added the word "blog" to my "rectal cancer" google search. I found five sites from women who were diagnosed with rectal cancer. The first four I clicked on are now dead. The fifth is living with Stage 4 rectal cancer. There is no cure for Stage 4 rectal cancer and yet she looks happy and at peace.

The question on the table now is whether or not I have a condition known as Lynch Syndrome. It would explain a lot. It's not good news, but it would explain a lot. I would love to know WHY?

Many of you want to know what I did wrong. You want to believe it is karma, or my bowls of wine, or ill-placed gerbils, or any number of my lifestyle choices. If you don't rationalize it, the fear of it happening to you is overwhelming. It's normal to do this. I understand. It's okay. But you should know that the odds of you winning the lottery are better than the odds of this happening to you. But then again, the odds of me winning the lottery were better than the odds of this happening to me. So, just to be on the safe side, you might want to schedule that colonoscopy.

I'm not afraid of death. I am afraid of dying - the process of dying. I am afraid of pain and suffering.

My fathers death was very dramatic. I hovered over him, stroked his hair and whispered to him - thanked him for all he did for me. He released a shallow, gargled breath and then slowly closed his eyes, and we all thought, there he goes, until he shot up, with his eyes wide open and sucked in more air.

He fought his death.

I will fight the cancer but I do not want to fight death.

I know I will not be alone. I know I am loved. I don't want to be a burden to anyone.

Which leads me to the topic of GUILT...

A few months back, when I told someone about my cancer (then my second diagnoses of melanoma), he responded by saying, "I feel sorry for the people that have to watch you suffer." I managed to walk away from that conversation without slapping him, mainly because he's an employee of mine, but it wasn't easy. He went on to tell me how much HE suffered watching his mother die of uterine cancer.

The following week, he apologized, saying it was a stupid thing to say. I told him I agreed, it was a stupid thing to say. I also suggested that maybe he has yet to work through the grief of his mothers death. He looked at me clueless, and I let it go at that. It's not my job to heal the emotionally crippled.

What his comment triggered in me is GUILT.

Guilt was the hardest thing for me to let go of after the death of my son. Guilt is suffocating. Guilt is debilitation. I will not let guilt separate me from my greatest source of strength, my husband.

For those of you who do not know our history, Mark and I met in kindergarden. We went to school together and graduated together but didn't have an actual conversation until our 20th High School reunion. My favorite line is, "Mark was still single, and I married just about every man I met."

When we first started dating my fierce, irish temperament mixed with his cool, Perry Como demeanor, was a recipe for disaster. If I would argue with him, he would fall asleep. Ten days after my son's death, he left for vacation and I could not bring myself to ask him to stay. When I was diagnosed with breast cancer, his actions and my reactions challenged our marriage to its breaking point.

And now, as we face yet another one of my physical challenges - he is my gallant knight, poised and ready to fight. He is patient, persistent, calm and astute. We share this illness. We welcome this challenge. 

QUESTION...

Cancer doesn't make you more likable so why is it that people who have publicly or privately berated, betrayed or abandoned me, are now reaching out to me? Is that about their guilt? If you don't like me, please don't pretend you do. My half-sister and half-brother, both not a fan of monkey me, have kept their distance and I respect them for that.

For the rest of you...

Please do not pity me. Do not restrict your living. Do not linger longer than you can emotionally tolerate. If you need to step away from the blog, from me, I will understand.

Today, I don't have a well scripted story or uplifting wisdom to share, but it's important for me to chronicle the hills and valleys of my journey because, like the other four women I found this morning, it is likely that my blog will out survive me.

With Love, 

MOnkeyME 

and my handsome husband, Pappy

August 17th, 2002

my Dad

If none of this makes sense it means you missed the first two posts:

Wrecked Tail 

Off to see the Wizard

Off to See the Wizard

Well, that didn't work out as planned. I'm not sure which one of you dropped the Love and Light ball (I'm almost certain it was a cousin on my mother's side), but please know that I forgive you (everyone but my cousin on my mother's side).

Yesterday, after an endoscopic ultrasound (aka more ass probing, this time with colored pictures), I was diagnosed with a T3 tumor. This is not the news I was hoping for. As soon I heard the words come out of the doctors mouth I knew my 5 year survival rate went down 37%.

FUCK CANCER!!!  Fuck, Fuck, Fuck FUCK CANCER!!! 

Speaking of FUCK CANCER, did you know that 90% of all cancers are curable if caught in Stage One. I was poised to do some major fundraising for Lets Fuck Cancer, thinking I could be the poster child for early detection, until I discovered my wrecked-tail cancer. Even so, this is a great organization - 100% MONKEY endorsed - so please take a moment to check them out. 

fuck cancer, fuck cancer, fuck cancer

(deep breath)

In a personal essay I wrote titled, Kerry's Wallet - a futile attempt at understanding the circumstances surrounding my son's death - I relay the contents of his wallet.

Late last night, between tears and screams and lip lined bowls of wine, I felt compelled to clear out mine.

In the center pocket of my wallet, pressed between old sales receipts and wilted business cards, was a half-folded, yellow sticky note. Written on it was the name, "Dr. Felice Zwas."

It was November of 2011 when my gynecologist, Dr. Donna Hagberg handed me that sticky note and said, "don't put it off." I remember thinking, "Zwas sounds like Oz, how bad can it be?" so I made the appointment for my first colonoscopy (syrupy Seuss rhyme alert).

Unfortunately, I was hyper-vigilant that day and also made an appointment for my yearly mammogram and we all know how that turned out.

14 months, and 7 surgeries later, I finally visit the great and powerful Zwas and the trip is not so sweet.

This time it's not self contained. This time it is not two, dried up udders being chopping off. This time I'll be losing something functional and necessary. (notice how angry I am)

What lesson did I miss from my breast cancer? I understand that I am here to learn and grow. I understand that adversity is my greatest opportunity for growth. I understand that I signed up for all this before touching down. So what piece of the puzzle am I missing??? (That is a trick question... don't answer it. You know I hate being told what to do and you know I have to figure it out for myself.)

I know, I know, I know I am strong, I can take it. But even so, I must confess, I spent the past week trying to figure a way out of this mess. (why is everything rhyming?)

What's next...

Two more opinions. One in the city at Memorial Sloan Kettering. God, how I hate the thought of going there but if you're unlucky enough to have cancer, and you want to live, it's hard to avoid.

The other opinion is a local doctor who is well respected.

I'm getting hugs, and tears, and even a few appropriately placed kisses from doctors and nurses who are compassionate and sincerely concerned. I find this extremely comforting. I like to make them laugh and I have a slew of one line ass jokes that I practice on them. Making them laugh helps me feel less vulnerable, less humiliated. Besides, I'm hoping my twisted sense of humor reminds them that I am human.

I love you all. 

Please keep your love light flowing.

If you don't give up on me, I won't give up on me.

xo, MonkeyME

Wrecked Tail

"The Jump is so frightening between where I am and where I want to be... 

because of all I may become I will close my eyes and leap" Maryanne Hershey

After 3 years and 367 posts, THIS is the moment where you start to doubt me - where you question if all the pain I've professed has been nothing but pure fiction. 

On Monday, May 20th - 8 days after Mother's Day, 7 days before the anniversary of my son's death, and 18 days before my 54th birthday - I went for a routine colonoscopy and was told I have cancer.

I am in shock.

I asked the gastroenterologist if we should wait until the biopsy results came back. She told me the tumor is large and it's "advanced" and that if it was in a better spot (as if there is a good place to have cancer) I'd already be in the operating room.

I was going to hold off telling you but I need your help. Please send me light and love and positive energy. 

I am having a test on Wednesday that will determine the stage of the cancer. We need it to be STAGE I.  The lymph nodes, liver, lungs, kidneys and ovaries should not get involvement in this wild ruckus. We need these confused, out of control cancer cells to CALM THE FUCK DOWN! 

I have rectal cancer but we monkeys call it "wrecked-tail" cancer. I have no idea how my tail got wrecked. So far, no one does. 

I put off having my colonoscopy at 50 because I hated the idea of drinking that ill-tasting concoction and hovering over a toilet for 24 hours. I hated the idea of someone shoving something up my ass while I slept. But let me tell you, that was a walk in the park compared to what I've experience these past 4 days and what my immediate future holds. 

I'm trying to get all the doctors to agree on my treatment but ultimately the decision will be mine.

My choices are radiation and chemo prior to surgery or surgery first and then chemo and radiation. If we can keep it at STAGE I, I will only need surgery. We need to keep it at STAGE I. 

The surgeon will need to remove my entire wrecked-tail and part of my colon. I will have a colostomy bag for 2 or 3 months and then there will be another big surgery to reattach and build new body parts. My surgeon is 90% certain I will walk away not needing a permanent colostomy bag IF I do not have radiation first. My oncologist believes I have a better chance of living if they do the radiation and chemo first.

Tough choices, right?

My main focus right now is (((LOVE))). Please surround me in love - rich, rapturous, radiant love. A LOVE that transcends. A LOVE that heals. A LOVE that is eternal.

Love and Light, MOnkeyME

There are four questions of value in life...

What is sacred? 

What is the spirit made of?

What is worth living for, and what is worth dying for? 

The answer to each is the same.

Only love.

Johnny Depp

Monkey Me sketch by Lars

Happy Me Day

Mother's Day 1999

Early Sunday morning, at about 5:47 AM, my son Kerry gave me a hug. It was a powerful hug. It was his Mother's Day gift to me.

It was bigger than a dream. I was outside, near a pool of bubbly blue water, when my dear friend Donna yelled, "Look Shannon, it's Kerry!" I turned quickly and saw him in the distance. He was very tan, his hair was dark brown, almost black, and he had a mustache. I thought he looked like a pirate.

He walked towards me with his arms stretched out wide. It was so vivid - his steps, the look in his eyes, his prudent smile, the slope of his shoulders, the force of his hands. I have only received one other hug from him since he passed away. This time there were no tears, only joy.


Selfish but true, Mother's Day is about me. I spend this day comforting myself. I recoil and revel in my sorrow - as much as I want to, as long as I need to, in whatever way I see fit.

Next on the calendar is my son's death anniversary - May 27th.
And then my birthday - June 8th.

It is a mercurial journey I take, from Mother's Day, to his death day, to my birthday. Sometimes, I'm pointed downward - huddled in gloom. Other times I'm craving stars and willing clouds behind me. And when it rains, like a fair-weathered fairy, I hide.

On this Mother's Day, I felt the warmth of the sun. I watched and listened to the birds. I marveled at the flowers. I dug with my hands into rich, dark soil. I remembered what I had, what I lost, and what will be.

I love you Kerry.

xoMonkeyME



Someday I'll wish upon a star
And wake up where the clouds are far behind me
Where trouble melts like lemon drops
Away above the chimney tops
That's where you'll find me... 

                                                        E.Y. Harburg    

Lucky Number 7

I am standing at the doorway waiting for the cat to come in. It is almost midnight. I am dressed in a long flowing gown. It is not a formal gown, it is a night gown. It is spring but it is early spring and the temperature tips towards frigid.

I am standing at the doorway, in my flowing night gown, with bare feet, make-up smudged and hair askew. I am gripping a half empty glass of wine as I call for the cat...

Phoebe Fong (cat has a last name), you know it's dark. Nothing good happens in the dark. Come inside NOW or I'll..."

The cat is bold and defiant. I have no sure-fire way of luring her in and she knows this. If I cut out her treats she'll punish me by meowing relentlessly. She'll never be more than two feet from my side and she'll wake me before dawn by sitting on my chest and terrorizing me with her eyes.

I am 53. I have no idea how or when I became a slave to the cat.

I am standing at the doorway, in my flowing night gown, waiting for the cat and aching for New Orleans. It has been one week since I danced their dilapidated streets. New Orleans haunts me. I imagine myself poised at the entrance of a funky town house in the Warehouse District accompanied by  tall, exposed brick walls, towering windows and wood rafter ceilings - all buttered in beams of sunlight.

Two weeks before I left for my road trip to New Orleans, my oncologist sat me down and told me that I needed to learn to live my life without fearing or focusing on cancer. Two days later a routine skin exam warranted five biopsies. All five biopsies showed cancer.

I hate the C word.

Depending on how you look at it, you might say I'm lucky. They caught the cancer early just as they caught my breast cancer early.

Even so, the C word is stuck in my head. It swirls around my New Orleans pipe dream and ambushes my reality.

Two of the cancers are melanoma's. Melanoma is the most dangerous type of skin cancer. If it is limited to the epidermis, the outer most layer of the skin, and if it doesn't come back and spread, I have a high chance of survival. Survival rate is one of the things cancer survivors store in their mental file box, along with biopsy results and treatment options.

Today, I am on the other side of surgery. I am standing at my doorway, rocking my surgical gown. The sun is shining. The trees are bursting with blooms and the sky is a crisp, stone-washed denim blue. The barn swallows are back and I laugh as I watch them swoop the cat.

I am high on vicodin. I am in minimal pain. After surgery number 7, I am once again, cancer free. I am reminded that all we have is now.

xxxxxxx Monkey Me xxxxxxx

For more information on skin cancer visit: American Cancer Society/skin cancer

Road Trip

Remember when I told you I was headed to New Orleans in April and I was worried about who would watch Sasha, our newly adopted Bernese Mountain dog, while we were away?

Maybe you don't remember this, but I told you. I told you I worried she'd develop bloat from the stress of us being gone. I worried she'd think we abandoned her. I worried she'd think we didn't love her enough to take her with us.

I went as far as making her a video so that she could hear our voices and see us every day. I also found an excellent companion that would live in our house and spend all day with her.

And then I cancelled our plane reservations.  I swallowed the $300.00 penalty fee and cancelled the tickets.

So where am I? 

Yesterday, we were in Lexington, Virgina. It's beautiful there. The Holiday Inn gave us a little Rubber Ducky and asked us to take it with us on our journey. Isn't that sweet.

Sadly, only one Ducky per room. And one shower cap. And one bathtub. And two dogs. One dog goes in, the other stays out.

Sasha goes in! 

Yesterday, we stopped at a Cracker Barrel. We saw a table full of Amish people. I gasped. I've never seen Amish people before. There was no horse and buggy outside. I don't know how they got there. Maybe they walked.

Today, we are in Fort Payne, Alabama. Promise me if you are ever in Alabama that you will NOT STOP HERE. You will continue driving until you reach Birmingham, or Tuscaloosa, or Mobile.

We are at the Days Inn. Our AAA Pet Guide book gave it two diamonds. I give it one bucket of coal. One, combustible, metamorphic bucket of black-ass coal.

The WiFi connection code at the Days Inn in Fort Payne, Alabama is "daysinnfpal"- all lower case. Now you have it should you ever break down on the side of the road in Fort Payne, Alabama. 

Next to our hotel is a Burger King. It is the only "restaurant" in town. Next to that is the Cancer Center. The Burger King is larger than the Cancer Center.

More than half of our hotel is completely gutted. There is a pile of toilets in the parking lot. They're used but they don't look as bad as the one that is in our room.

Our room has a view of the pool, which is closed for the season.

Our room has a popcorn ceiling. No surprise there, but what does surprise me is the walls. They are a micro-mini popcorn texture - what I imagine fossilized asbestos looks like.

Our room has no carpeting. It is a smoke free room and yet the bedspread and acrylic blanket is sprinkled with burn holes. And there is something about the lighting that makes my hair look green. Every fifteen minutes or so I have to ask my husband if he thinks my hair looks green.

He says, "NO." Normally, I wouldn't mind if my hair looked green. Green is, after all, my favorite color. But this is not a good green. This is a, I stayed too long in the chlorine pool, green. But the pool's not open and even my skin looks green.

There is an empty vending machine and a broken ice machine and a line of free, giant TV's just outside our door. All of them are broken. Nothing in Fort Payne, Alabama works.

I didn't sleep well last night. I was worried about our car. The dogs wanted to sleep in the car but we didn't think they'd be safe. We parked the car under a light and later discovered that none of the lights in the parking lot work. Why did I think they would work, I've already proven that nothing in Fort Payne, Alabama works. Except for the women at the front desk at the Days Inn. And the people at the Burger King. And the construction men that are banging and drilling and hammering and gutting 100 of the 125 room at the Days Inn in Fort Payne, Alabama. 

the view from our room

what TV's used to look like

before I pushed the furniture against the door

xo, MNKY. ME