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

Thank You For Encouraging My Joy of Writing

Thank You For Encouraging My Joy of Writing

Shannon E. Kennedy


Photo by Joan Harrison