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

Wednesday, July 17, 2013

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.

Wednesday, July 10, 2013

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:

Thursday, July 4, 2013

Fuck Cancer (this time I mean it)


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

For my complete cancer journey visit CATSTIR.

Thank You For Encouraging My Joy of Writing

Thank You For Encouraging My Joy of Writing

Shannon E. Kennedy


Photo by Joan Harrison