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 I am withdrawn.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

Thank You For Encouraging My Joy of Writing

Thank You For Encouraging My Joy of Writing

Shannon E. Kennedy


Photo by Joan Harrison