Happy Anniversary to ME

"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

Recap and Release

May 20th, 2014 marked the one year anniversary of my "wrecked-tail" cancer diagnosis.

I put off having a routine colonoscopy at 50 because I hated the idea of someone shoving a rod up my ass while I slept.

At 51, with no family history and no obvious precursors other than the fact that I was a women over the age of 50, I was diagnosed with breast cancer, in both breasts, and underwent a double mastectomy. The head plastic surgeon at Memorial Sloan Kettering allowed two attractive female residents to do the first stage of my reconstruction and their gross errors resulted in six additional surgeries.

Twenty days after my final reconstruction surgery (and yes, they are finally FABULOUS) I went for a routine colonoscopy even though I had no symptoms, and again, no family history that would suggest any concerns.  

When I woke from the procedure I was immediately told that I had advanced rectal (wrecked-tail) cancer and that if the tumor was not so large and so low in the rectum, I would be in the operating room that same day.

My initial tests were done at a local hospital which is affiliated with Yale New Haven. I also went to Cornell Weill, Memorial Sloan Kettering and Johns Hopkins.  Each hospital did their own battery of tests and had their own opinions. The only thing they were in agreement with was that I had a low rectal, T3 tumor and that I would need surgery, chemotherapy and radiation. 

Memorial Sloan Kettering told me that my cancer had spread to my lungs and two or three pelvic lymph nodes, and that they would have to treat my lungs first with chemo for six months before addressing the rectal cancer. This would mean I was stage 4, incurable, with a very grim prognosis.

Cornell Weill suggested surgery first, followed by chemotherapy and radiation. The surgeon told me he was 90% certain I would not need a permanent colostomy bag if I did NOT have radiation prior to surgery but my oncologist warned me that I had a better chance of survival if I had radiation and chemotherapy prior to surgery.

The radiation treatment plan for both Sloan and Yale New Haven was six weeks of external beam radiation combined with chemotherapy in the hopes of shrinking the tumor prior to surgery.

External radiation never made sense to me because without visual confirmation, they were guessing at the exact location of the tumor. The rectum hides behind the bladder, the vagina, and the uterus, and all this could easily be damaged during radiation. Vaginal stenosis and bladder incontinence are two of the many possible (probable) side effects.

Johns Hopkins was the only hospital in the country that offered internal, high dose radiation without chemotherapy prior to surgery, and it was the only option that made sense to me.

It wasn't fun having a rod shoved up my ass, this time awake, but it was doable if it meant the side effects were less and the odds of shrinking the tumor were greater.

Trying to get all the doctors - surgeons, oncologists and radiologists - from four different well respected institutions, to agree on my treatment plan was futile. In the end the decision would be mine and I chose well.

In July of 2013, I became the 16th person in the United States to undergo Endorectal Brachytherapy (internal high dose radiation) and on September 10th, of that same year, I had 21 inches of my large intestines removed which included my rectum, my sigmoid colon and part of my colon. In addition to this, my surgeon used part of my colon to create a "Jpouch" which would later serve as my rectum. Fortunately my sphincter muscle was not effected by the cancer. If it was I would have needed a permanent colostomy bag.

I received a COMPLETE PATHOLOGICAL RESPONSE (the best possible outcome) from four rounds of internal radiation at Johns Hopkins which meant that the post surgery pathology report showed no evidence of cancer. And out of the 26 lymph nodes that were removed, none of them tested positive for cancer.

Even with this report, I would still need a port placed and six months of chemotherapy. For me, the chemo was pure hell - worse than surgery, worse than radiation, worse than living with a stoma and an ileostomy bag.

Sixteen days after surgery, my marriage fell apart. I was intrenched in physical and emotional turmoil. Not since the death of my son had I felt so frightened and fragile.

As much as I needed the support of my husband, I could not allow him to be part of my life. The wound was too deep. In addition to his loss, I lost the support of his family and most of my family. I have two sisters and a brother but they didn't care for me before my cancer so I didn't expect that to change. What did surprise me is that I received absolutely no contact from my mother during my chemotherapy and recovery. My fathers death in January of 2012, left me missing him more than ever. I felt abandoned.

In fairness, I could have reached out to my mother and one of my sisters did offer to pray for me.

As I have mentioned before, I received amazing support from my close circle of friends and from my immediate family - my daughter Lindsay (aka Ling), Mary, and grandson Jackson. 

On May 6th 2014, two weeks short of the one year anniversary of my diagnosis, I had my reversal. During this surgery my stoma, which is an exposed portion of my small intestine, was closed and repositioned below my stomach muscles. I also had my chemo port removed and an incisional hernia (aka "The Baby Head") repaired.

The adjustment is difficult but it is temporary and most important, this dance with cancer is now behind me. It is time for me to focus on living and stop worrying about what I cannot see.

I give tremendous credit to the skilled doctors, physicians assistants, and nurses that treated me, but I also give credit to the ((((((LOVE)))))) that was sent my way. I felt it everyday.

LOVE heals ALL wounds.

With Love and tremendous Gratitude to my Circle of LOVE and all who smile my way.

The Circle...

 Lindsay, Mary, Jackson,

Jay, Miss Pegged, Miss Claudia, Camille, Mairead, Monkey Gurl, Annika, Sarabarakat, Bev,

Eddie, Jesse, Chris, Chad, Tracy, Shoes, Turtle, Fox, Dust Bunny

Jay and MOnkeyME

my beautiful daughter Lindsay - what a gift she is

Monkey Gurl, Trombone Shorty, MonkeyME

Steve, Miss Pegged, MonkeyME, Ling, Monkey Gurl

Spitfire Steph

A Tale of Two Shannon's

Annika, MonkeyGurl, KiKi, Miss Pegged, Ling, Torrey, Steph, Drew, Nukki

MonkeyGurl, Miss Pegged, Sarararabarakat

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