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


48 comments:

  1. I'm betting it all on you too! F... Cancer!!!!!

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    1. yes, indeed........ it's one of those things I can say that instantly makes me feel just a little bit better. FUCK CANCER!!! (THAT was a loud one)

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  2. I hope that last little lung nodule disappears too. I like how you pick horses -- it's as good a system as any!

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    1. if nothing else, I love watching them and for those who are scared (and some really are), I try to mentally calm them and give them a boost of confidence. Thankfully, no one hears whats going on inside my mind or they'd lock me up for sure.

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  3. I am betting on you, no question about it. Regardless of how they look, I've no doubt the ponies are all betting on you too.

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    1. :))))))))))))))) thank you Denise!!! that brought on a big smile.

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  4. Dearest Shannon--

    U are on my mind everyday. There is a Green Monkey moment everyday for me.

    Lately, I have been pondering life. And this is what I have done for myself, just live for the day literally. Be joyful that I have a roof over my head, electricities are paid, food in the frig, pain is tolerable. I have learned to live with my recent pain of five to six weeks now. And, I take the time to enjoy time with my pup. He knows the true meaning of living life. In the now.

    We don't know when any of our lives will end. I think that is fortunate.

    But I encourage u if u can and aren't uncomfortable or in pain, continue writing ur book/story. If u can, take one moment at a time. I know u are trying. And life seems unfair. Very unfair that u have to suffer with cancer scares and also with the loss of Kerry.

    I think of u everyday. And everyday I hope that today is a good day for u.

    I look forward to ur blogging. I hope that you won't keep anything from us. We care about u and want to know what is happening if u feel like sharing.

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    1. Stormy, what I don't want is for people to feel sorry for me so, that means I can't write about something if I'm feeling sorry for myself (if that makes sens). It's like I have to process it first. It's amazing what I've learned to accept - the cancer, the side effects, the colostomy bag, etc. But it takes time... baby steps.

      yes, live in the moment, hug a pup. So much comfort comes from Sasha and Lucy. When I wrote the post this morning, they were all with me, (even the cat) laying around my desk. To ease the tail pain, I'm sitting on a silly childs inter tube and it makes a funny, squeaky sound when I move around. This used to startle them but now they just look up at me to make certain I'm okay.

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    2. I understand about not wanting people to feel sorry for you. But I just don't want u to feel like we don't want to know what is happening to u. I am keeping a very close eye on your blog for whatever word u feel comfortable sharing. Baby steps those steps add up. So u keep on ur journey and we'll stay right beside u all the way.

      Those pups/cats do make life more pleasant and tolerable especially when we are hurting. I love looking into the pup's eyes and seeing such a very deep soul/spiritual side inside him. He teaches me what is IMPORTANT in life.

      U are in my thoughts and prayers daily.

      And in the end what a story u will have to tell.

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  5. Oh my goodness,

    I admire you hugely for having said no to that initial chemotherapy on your lungs. That's huge. And I'm so, so happy the nodules are shrinking away. You are navigating this garbage on your own terms, and that is HUGE. Keep going.

    ~Catherine

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    1. Hi Catherine, yes... the no chemo on the lungs was hard - part of me was thinking, who the hell am I to tell Memorial Sloan Kettering that they are wrong. But the truth is I have no faith in them after what they put me through during my breast cancer. The other day I was going through my reports from the breast cancer, and I have my breast surgeon's notes, where (in her own handwriting) she says, "based on her DCIS and melanoma, patient wants an oncologist and I tried to explain to her why she doesn't need one" ... I also asked for a PET scan and was denied. It's as though I was being punished for catching my cancers early. But my gut KNEW something was wrong. There I was treating my breast cancer while my main cancer went undetected. And if I didn't have so many additional surgeries as a result of the plastic surgeons errors well...... I need to learn to stop looking back but still, its hard not to play, "what if"

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  6. I want you to know (in case you haven't already seen her) That I carried Shannon, MY green monkey, with me my ENTIRE 60 mile walk this weekend. THE ENTIRE WALK Miss Shannon, for YOU. Everyone who asked and commented knows your story. They sent love. THOUSANDS of people's mojo was sent to you over the last three days, through rain, drizzle, sunshine, and lawn sprinklers.

    If I walk again, preferably San Diego 2015 (gotta give my toe nails a chance to grow back) she will walk again.

    Love is a powerful force Miss S. And that's all I have for you.

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    1. I had to step away... I am deeply moved.
      Went to the park with the dogs to get out of head for a bit. the whole time I couldn't stop thinking about what you did. this is powerful.... still cant express words. I'll try again in a bit.

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  7. Quite a bit of stress dear! Ugh. You have great big shoulders to carry all that concern with the grace in which you do it. Wishing for your continued healing :)

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    1. ohhh what a good idea.. wine and words.

      so great to hear from you! thank you for your well wishes. it really means the world to me.

      thanks to all of you, I am never alone.

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  8. Sending warm thoughts and love, Monkey.

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    1. thank you Ben. again, you are so good to me!

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  9. Sweet Shannon,

    I would bet it all on you, too!

    You ARE the person who WILL squeeze every positive second out of life - and I find that amazing about you :)

    If I had one, you'd win my "Ain't-Stopping-for-Nufink" award:)

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    1. ahhhh so glad you don't see me on my off moments - like when I finally realized I won't be able to make it to Burning Man this year. Pouting like a baby I was!

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  10. Hi Shannon. While we don't know each other very well, what I do know is that I am a fan - both of your innate spirit and of the writing that touches me at so many levels. At the end of your blog are the following words: "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." As you know, I am also a writer/editor. Your words struck a chord within me - the JOY you speak of is all MINE. The book you speak of is necessary. You, my friend are a natural. YOUR writing feeds OUR souls and strokes OUR hearts. Write, Shannon. We will wait patiently for you to finish, but our collective souls and hearts will wait with bated breath for that glorious day. Blessings, my friend.

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    1. soooo glad you disclosed who "madamsuper" is. Thank you for the writing comments. I am so insecure about my words. I've stopped submitting - the rejection was getting to me. But I will keep writing!

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  11. Keep Monkeying, Dear!!!


    ALOHA from Honolulu
    Comfort Spiral
    ~ > < } } ( ° > <3

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    1. monkeying is what I do best! thank you Cloudia!

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  12. Hey YOU!

    I'm betting on you as well!!!! I am confident... VERY confident!!!

    ~shoes~

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    1. good! I've been visualizing me strong... your confidence feeds that. (((((((thank you Shoes))))))))

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  13. No tears in my eyes, cause I'm betting on you too. So wonderful that you're incorporating fun in your treatment.

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    1. so much so that sometimes I forget I'm sick. this is good and bad. good to turn it off but its a heavy thump when it forges back to the front.

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  14. You have had to battle not just cancer but also the medical establishment. Butt you are bringing tons of spirit, moxie, wisdom, courage, and wit to this battle. And processing your thoughts and emotions in order to write is probably a very valuable experience...you reach a new place sooner than someone who is not looking to write for publication.

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    1. thats an interesting comment Blissed - that I'm reaching a new place sooner. thank you for that!

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  15. I'm so glad you came by for a visit, because it prompted me to return the favor. I admit sometimes it's hard for me to read about your journey with that f*#&er cancer. BUT, it's a credit to your writing that you can do it and do it so well. I don't feel depressed, or afraid, but uplifted by your ability to face this ordeal with such candor. You are a terrific writer and an amazing person. yeah, I'm betting on you too.

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    1. thank you for saying that - i know its true - that its hard for people to read (at times). I keep that in mind when I write but my emotions are true and it feels so good to let them free.

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  16. I'm so glad you share what you share. Sometimes it is difficult to determine that line isn't it? Good for you for making decisions that feel right to you. I admire you for that. Here's to lots more calmness and hope. And good luck with the book!

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    1. thank you Nancy! the gut never lies does it. xoxo

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  17. Lovely Honey, sorry you're not going to BurningMan, next year will be better timing.

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    1. thank you honey. still sad about missing Burning Man.

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  18. my dear Shannon,

    the thing to remember her is - YOU BET ON MASS DESTRUCTION, AND HE CAME IN DEAD LAST!

    I made a decision that totally went against the "gold standard" of radiation to my breast. the rad onc listened carefully, and I asked if she would consult with my breast onc as well as my breast surgeon. she did. then they took my case to a tumor board. only one doc had a comment that was totally off the mark. afterwards, my breast surgeon, chatting with the physicians who participated, heard the rad onc say, "in this case, the patient was the voice of reason." radiation as planned would have destroyed lymph nodes that were found clear of cancer to the left of the affected breast, and to the right from my esophagus down to the pre-cardio region would have caused damage to my sternum, heart, and one lung, probably over the better part of the next twenty years. I jump up and down and cheer for you in my head, Shannon, for stepping up to the plate and advocating loud and clear for YOUR best interests. I know you have more to face, but I am so happy that you are shored up with the confidence that you had a perfect right to make the best decisions for what made sense and were right for you. I sometimes get the feeling, as I did when my case was reviewed pre-radiation, that many physicians are well aware that what is referred to as the "gold standard" know the terrible repercussions of that treatment, and feel relieved when their informed patients say, "NOPE, IT'S NOT GONNA HAPPEN...".

    what you spoke of about processing before telling is another instance of how well you know yourself, the courage and determination to sort things through, then come up with a position YOU are confident with. your ability to write about complex and interwoven issues is stunningly inspirational. though I know this ain't your first time at the rodeo, I still greatly and vigorously applaud you; and I know legions of others who wrestle with like situations and read you blog will benefit from your honestly, raw candor.

    I wish you comfort, continued peacefulness, and send you my love and the bright shiny light of hope to find your way, Shannon. you are an earth angel who walks among us, and even takes time to give compassion and comfort to HORSES. that makes me cry, it's so damned beautiful.

    XOXOXOXO,

    Karen, TC

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    1. Thank you Karen!!!!!!

      okay.... now I see the positive in MASS DESTRUCTION coming in last! that really does make me feel better. I was betting on the MASS to be DESTRUCTED

      your wish for comfort, peacefulness and hope have found its way to me.

      xoxoxo (((((LOVE))))))) to you

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  19. You're an easy bet, Shannon, because you have already won. A million people would gamble everything they have for a chance to have what you have; your charm, charisma, loveability.. I used to have a company that catered to the wealthy who found themselves empty. There are a LOT of them. You may feel like the race is run, and sometimes, it may feel like you're not placing well, but there are SO many horses that can't even get to the track.
    You win. You won.
    We are have been cheering you on.
    All of my Karmic money is on Green Monkey, and has been since we connected.
    :-) Jesse

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    1. ahhh my two favorite people. so honored to have you both in my corner.

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  20. Been down that lung nodule panic road as well, GM. A year later and mine are still "stable". So screw them; focus on fixing the tail.

    ~D.

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    1. soooo glad to hear that Dee! monkey hug to you my friend!

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  21. I am betting on you! Doctors are doctors, not psychics. Do you see an expiration date anywhere on your body? Your docs are only going by stats...they don't know you. I agree...focus on your tail... And I was given a 10% of survival and I'm still here! xo Inge

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    1. :)))))))) you make me smile Inge! thank you...

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  22. Dear Shannon, just to let you know I am thinking of you and sending all my best wishes during this stressful time. It will get better, you will get better and you will survive.

    Love Lilly from downunder.

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    1. Thank you Lilly!!! I will survive! I'm going to hold onto that :))))

      damn, that downunder love feels good!

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  23. Shannon!! The gut most certainly never lies. It is very hard to listen to your gut and fly in the face of medical professionals, but as someone above me said, the pros operate on statistics (most of them, anyway).

    It takes a slow-hand doc to stop the hamster wheel of diagnosing, to listen to the patient and to his/her own gut too. Modern medicine doesn't afford these guys that necessary time. And that's why, as patients, the onus unfortunately falls to us to sort through and make sometimes very big decisions that fly in the face of "typically" done. Your "Just Say No!" to lung nodule treatment is but one exquisite example of your super-smart handling of the latest #@$%-storm that is being slung your way.

    Whack! Whack! Whack! That's the sound of the Green Monkey using her very large, proverbial paddle to return life's harsh and unwanted serves. (Kinda reminds me of whack-a-mole. Each time a new problem pops up, whack it back down!)

    Unending {{{hugs}}} to dear Monkey from your friend Renn.
    xoxo

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  24. I love the "Whack! Whack! Whack!" I'm going to visualize that to aid in my healing. You're so wonderful Renn. Johns Hopkins wants to do another CT scan when I go for my preop and again I'm sayin' "NO, NO, NO!" (thank you Amy Whinehouse) because I don't want to know if its progressed two weeks before my surgery. I want to focus on my wrecked-tail. Besides, I don't need the extra radiation. I've had more than my share...

    ((((LOVEHUGS))))) and soooooo much appreciation and gratitude! xoMonkeyME

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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