Saturday, May 24, 2014

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



38 comments:

  1. Best. Post. EVER!!!!!

    ReplyDelete
  2. Love heals all <3 Much to you, Monkey!

    ReplyDelete
    Replies
    1. Ahhhh... thank you Ben. LOVE back at you! xoxo

      Delete
  3. Love it is what we want. To be loved and to love with all our heart and soul.
    And now u must write. For u have gone thru hell and survived.

    Suicide, breast cancer rectal cancer, marriage issues, betrayal, loss of love BUT u r loved and cared for by friends. And sometimes I think friends r better to have than family and sometimes even mates. It is a blessing to me that our paths crossed in the blogging world. U r an inspiration and more than that a great story teller whom I love to read. Have a blessed day!!!!

    ReplyDelete
    Replies
    1. Thank you Stormy! I appreciate your support. Love and hugs to you my friend!

      Delete
  4. Outrageously GREAT!!!!

    You ARE loved!!!!

    ~shoes~

    ReplyDelete
    Replies
    1. remember, you're in charge of my ashes Shoes! xoxMuch LOVE headed your way. NOLA awaits!

      Delete
  5. Hi Shannon,

    Love is the answer. I am so glad to read that you are on a new path forward, and that the old news is now written into the record of time and can be replaced by new adventures. Your travails were such a hard road.

    I wish you only the best going forward. I smiled broadly at your jab at the "spinster" muscle. That is a wonderful image.

    Namaste, Ed

    ReplyDelete
    Replies
    1. HA!!! of course I didn't see that and wouldn't have unless you or someone pointed it out. "spinster" muscle...LOL. Thank you Ed for knowing what to say and for encouraging me to stay strong. The hard part is focusing on living and not fearing a reoccurrence - but you know that as well. I want to wait 6 months for my next battery of tests. Its always so stressful.

      Delete
    2. So, of course, you corrected it and now my comment is nonsensical. That is an additional crack-up (no pun intended, but it is kinda funny), but I will own this one. I cannot tell you how glad I am to "see" you back here. Honest. I am so happy! Anytime you want to chat less publicly about any stresses as a survivor, you have my email... Stress must seek relief...

      Your friend, Ed

      Delete
    3. I am waiting on thyroid biopsy results which I hope to get by monday. if that goes well, I am done with tests for 6 months. I need a major cancer time out. I will email you Ed, I have a question or two, or ten... :)))))))

      Delete
  6. I agree Monkey Gurl...BEST POST EVER!! You are loved dear Shanny! So glad the worst is behind you and you can get back to "living intentionally!" Hugs!

    ReplyDelete
    Replies
    1. We have to find time to get together... NYC? CT? PA? Jersey???? xoxo

      Delete
    2. Jersey!!!!

      Delete
  7. you are a survivor for sure. I am amazed how you can stay on top like you do. You are my hero. Hope to see you at the Temple Burn this year so rest up my friend....J

    ReplyDelete
    Replies
    1. yes, I am really looking forward to the Temple burn this year. We are going to rock the playa!!!

      Delete
  8. What a lovely, lovely surprise to see this post and read such blissfully happy news! Congrats, dear Shannon. I have been thinking of you and wondering how you were and then I see this… A wonderful read by simply wonderful you. So relieved! xoxo

    ReplyDelete
    Replies
    1. Thank you Renn and thank you for the post on your page. You're a wonderful person. respect and love, Shannon

      Delete
    2. xoxo!!! PS I immediately thought of you when I saw this call for writing submissions: http://dimestories.org/call-for-submissions/ Deadline is June 15!

      Delete
    3. And this too: http://lunalunamag.com/be-featured-on-luna-luna/

      Delete
  9. You are a great person!!!!!!!!! LOVE YOU!



    ALOHA from Honolulu
    ComfortSpiral
    =^..^=

    ReplyDelete
    Replies
    1. thank YOU Cloudia! you spread LOVE everywhere you go.... xoxo sending more love your way!

      Delete
  10. I am so happy to read this, Shannon. You have survived incredibly awful situations again and again. You were strong before, and you just got stronger and stronger, even when you didn't want to have to. The woman smiling out of all those photos really looks like she is embracing life, love, and joy, and I wish you an abundance of all those things.

    ReplyDelete
    Replies
    1. Thank you Nancy! You've seen me go through many lows... so happy to celebrate the highs.

      Delete
  11. I know I' have missed a few posts on recent months, but this certainly appears to bring everything up to date.

    I almost always have a lot to say about ANYTHING I read, but with your posts, I'm generally left speechless. There's rarely anything I can say that doesn't sound ridiculous.

    I'll just say i was thrilled to read this and look forward to what comes next from you...

    ReplyDelete
    Replies
    1. Thank you Katy! It's a lot easier writing the happy parts. Thank you for taking it all.

      Delete
  12. Wonderful news! Happy Anniversary!

    ReplyDelete
  13. My heart leaped when I saw my name on that list. I feel like I've done nothing. I wish I could have done more.
    You being Cancer free is the greatest thing in my life right now!
    See you in our fair city!
    Jesse

    ReplyDelete
    Replies
    1. You never left my side Jesse.... xoxo

      Delete
  14. I am so happy to see you back here again, writing and feeling happy. Yay for you!!! And now get out there to enjoy the summer. Can't wait to read about what's next :-)

    ReplyDelete
    Replies
    1. Yes, summer will be extra sweet this year.

      Delete
  15. What a great post. It is a good sign that you are back to writing again. Still sending live your way.

    ReplyDelete
    Replies
    1. I get so excited thinking about you sailing about! Can't wait to visit you. Love my friend Bev!

      Delete
  16. dear Shannon,

    I am so very happy to read this post; you did such a great job with the re-cap, and I can decipher some cautionary tales, as well as your incredible tenacity to make what you so believed in actually happen to get to where you have now arrived. I am sorry some of whom you thought would be in your corner, supporting you and cheering you on. and not having your dear Dad to be at your side must have been so painful; perhaps he was busy working in your favor on the other side?! but your always present circle of love, even many you might not have even known about, were with you every step of the way.

    I am beside myself with outright joy, celebrating with a happy dance in my head, thrilled to know you are well and anxious to see the always amazing, WHAT"S NEXT?, of your life!

    much love,

    Karen XOXOXO


    ReplyDelete
    Replies
    1. yes, I agree, Dad and Kerry were by my side. thanks for sharing in my joy! it is a wonderful thing .now to live in the moment and appreciate the day. you are so good to me Karen! xoxoxo lots of love your way! xoxoxo

      Delete
  17. Hi Shannon,
    I am thrilled to read this. I really appreciate this recap of some of what you've been through. You have truly been to Hell and back. I am proud of you for advocating so hard and making tough decisions that were right for you. And yes, how wonderful to have access to such fine doctors. I'm sorry about all the family issues... Love the photos of your dear daughter, Lindsay. Great name by the way, right? Thanks for sharing your story. You are inspiring many I'm sure. You're inspiring me! xxxx

    ReplyDelete

Thank you for encouraging my JOY of writing. By reading and commenting you are feeding my soul, stroking my heart, and in the end...making me a better writer.

Thank You For Encouraging My Joy of Writing

Thank You For Encouraging My Joy of Writing
greenmonkeytales@live.com

Shannon E. Kennedy

***

Photo by Joan Harrison