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.



37 comments:

  1. You are an inspiration to me. The ability to follow your gut and say NO is so impressive, and something I'm trying to decide upon. I just totally admire how you call the shots. Good luck with the scan, I hope you get the exact results you're looking for! ~Catherine

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    1. thank you Catherine - I'm already losing sleep over it. trying to walk into it expecting good news. but it's not easy.

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  2. dear Shannon,

    thanks for the 20 rules to live by list. we need to be our own best advocates and not just part of a herd; doing the homework then going with our gut to create our own personalized care is not bucking the system - it's making whatever we can utilize (or not) of the system work for US. I made a major decision against the so called "standard of care" with radiation - it saved me from damage that would have unnecessarily affected my QOL. rather than the fight with my medical care team I thought I would have on my hands, I sensed that they actually felt relieved at the decision I made. I still had radiation, just not their "scorched earth" version.

    I will be thinking of you, sending powerful vibes for good news from your scan.

    love and light, XOXO

    karen

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    1. love and light to YOU karen! xoxo thank you for reading and for sending the good vibes!

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  3. Clearly you are taking responsibility for managing your own health and making your own decisions. Good for you!

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    1. trying Debra, trying... I hate the odds.

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  4. You are amazing! To search and search and search for all the information you want and need to know, You Rock! I admire you more than you know. I'll be thinking wonderful, blissful, truly scrumptious thoughts for you! And thanks for The List. It's something that needs to be printed and taped to the bathroom mirror! Hugs...xoxo

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    1. whatever did we do before google. my searching is, at times, obsessive. but it typically calms me. i want a happy ending

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  5. First, let me just say that I am always sending positive energy to you. And of course, I want the very best outcome for you.

    Second, I must say that those are adorable costumes. I can only imagine what my Zoey would do if I attempted to put her in a costume. It would be an almost immediate waste of money.

    Quality of life is a huge deal. However, I am quite amazed at people who overcome very big obstacles in their lives and still make the most of each day. The human spirit is awesome....and so are you. xoxo

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    1. as far as quality - I'm trying to to base it on body image - for example, I won't avoid surgery out of fear of the bag. i've been introduced to too many people who live full lives with it. but what does concern me is how the cancer spreads once you cut into it.

      yes, the human spirit is amazing... and so are YOU! As always, thank you for reading and commenting Denise.

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  6. I like the 20 rules and would like to share them on my blog. Everything looks good for you. You are on the right track.

    Are you open to drinking fresh green juice that you make at home in your own juicer? I did and still do that and I believe it keeps me cancer free. My doctors are agreeing with me...finally. They see the positive results. Here is a link from someone who beat colon cancer and juices http://www.youtube.com/watch?v=tqmUySUdEmo

    xo Inge

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    1. This comment has been removed by the author.

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    2. I'm open to a LOT of things Inge - hemp being one of them. checking out the link now! xo

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  7. PS I forgot to say that I LOVE the doggie costumes! :)

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    1. it made perfect sense at the time, but now, I've got this bag full of lobster costumes and two dogs that want no part of it. Maybe, when we take them to Martha's Vineyard...

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  8. When in doubt I have always gone with my gut... course yours in all messed up right now, so I'd say go with any part of you that tells you what to do. Your heart, your mind, your doting husband. :) OR race horses. Race horses are good too.

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    1. :) sometimes fear messes with my head but never my heart. Thanks for following me on this ridiculous journey Juli! xoxo

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  9. I always bet on the Monkey....


    xoxoxoox


    MG

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  10. You are an inspiration. And the 20 rules rock. I'm going to keep them handy for the day I need them, either for myself or to remember to support the decision someone else makes.

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  11. I, like MG, never underestimate the power of the Monkey.
    xoooxoxoxoxoxoxoxooxo
    <3<3<3

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  12. I'm so glad that you're feeling well now. And I trust the gut as a good indicator, as good as the brain and as good as technology. So make your choices, your gut doesn't lie.

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  13. Great post - but I must admit that I howled out loud at the costumes - LOVE THEM!!

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  14. Your very first sentence could be tattooed on my head I think. I get it. I love that you're an advocate for yourself, your body, your health. I get so tired of doctors telling me "WE know better." and then they give a glance to their diplomas on the wall, like "SEE? I have the education. The little gold seal proves it. You know nothing minion."

    I usually fire those doctors because they aren't listening.

    I will add a 21st rule if you don't mind, because I learned this a long time ago. NEVER, if you can help, go to a doctor's appointment, blood draw or treatment alone. There have been so many times I have been overwhelmed [or whacked out on meds] that I would forget to ask the questions [or read them from the list I brought] and my husband has rescued me from leaving the doctors without the info or the help I needed. My daughters have done it a time or two also. They love us and they do actually listen to us. They remember even when we don't.

    I think it is why I have such a strong aversion to being admitted to the hospital. Visiting hours. No one can stay and have my back 24/7. Ah well.

    I think I am going to start reading the racing sheets. How cool would it be to find a horse named "Green Monkey"? That would be a $100 bet on my part. No kidding. Like your friend above said in comments "I'll always bet on the Green Monkey." Me too!

    And, as if all my comments are semi novels, may I just add - the doggie costumes are da' awesomez. You might discover that we love putting things on our dog too. But usually it involves household items like wrapping paper, glitter and bubble wrap. I want the crab. ::grin::

    Take care GM. I don't know why, but I just have this feeling that you are going to win this.

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  15. Aloha!

    Thanks for stopping by and you know what I never mentioned this before, (basically because I just thought of it) but if you and the better half make it to Hawaii before Sept. 2015 - when we leave - let me know, Dude-ette.

    I can sooo hook mah sistah from anuddah muddah UP!

    Until then, and as always,

    ((SHANNON))

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  16. Those Halloween costumes are "darling". I say that with a very southern drawl. I was in a few stores this weekend and noticed that the Halloween stuff was out (pet costumes included) Most would be upset with them being up in August. I LOVE IT. As these coming months are my most favorite. October, November and December.

    Time just keep on ticking by and now we are at the next stage of your journey. As always my thoughts and prayers are with u. I am joyful that u have been able to have some summer fun during these breaks in between ur fight.

    My heart always skips a beat when I see via my email that Green Monkey has put up another blog.

    Take care my friend. As always, I am watching for ur next word.

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  17. Great post, Monkey. What did you mean by live your life with death in it?

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    1. great question Ben!

      One of the beliefs of Buddhism is ... "attachment is the root of suffering" ...it teaches us that when we rid ourselves of attachments we will experience pure joy and freedom. This is deaths gift. We know that death is inevitable. If we focus on the significance of our own death then we can learn to relish our physical life. "death becomes the key that unlocks the door where the beauty and meaning of every living moment can be found..."

      as always Ben, thanks for reading (and for pushing the berner love forward!)

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  18. The dog costumes are THE BEST!

    I agree with SkippyMom. I rarely go to my specialist alone if I'm not feeling well. I'll bring my daughter if I have too and I always bring my pen and paper to write notes. I'm notorious forgetting something. It's so much information at one time!

    I admire your courage and strength. I think if I were walking on your path, I'd go with my gut too. My thoughts and prayers are with you on your journey. Many hugs.

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  19. Great post, great list, great to have you back! (And have your back too!)

    Two things: 1) Saw a post and though you would relate: (http://therumpus.net/2013/08/the-sunday-rumpus-essay-grief-magic/) and 2) Spilt Infinitive is looking for submissions again (http://www.spiltinfinitive.com/submissions/#.UgktDxZrbRg). I know you are busy, but wanted to share...

    I think of you often, dear Shannon!
    xoxo

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    1. thank you Renn. I did several submissions back in January to March and then spent the next few months swallowing rejection. tough to swallow but still glad I did it. time to start all over again! xoxo

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  20. My heart leaps too when I see a post from you. I heard the "chime" on my phone while I was having a lymphedema treatment. When I saw it was your email, I sat in my car and read it before driving back to work. I love the list, especially finding a doctor that cares about you! The costumes. . .? Hmmm, my dogs would give a low growl if I approached with those in hand. I am learning from you that life can be lived on "my terms." Thank you for showing us all the inside journey, well that's Freudian! I meant your heart, hopes, and how you are wrestling with this. Yes, you are my she-ro! Sending you light, intuition, and love!!

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  21. Hey there, Sunshine. great post, you...

    I love your rules 'To Live By'...

    Makes Great sense to me...

    I found another 'Mummies' song that I think you would appreciate! ;o)

    http://www.youtube.com/watch?v=eB5EE42So7I

    *huggles*

    ~shoes~

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    1. PS: I LOVE the dog outfits!!!!!!!

      ~shoes~

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    2. Thanks Shoes! those Mummies make me smile :))))


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greenmonkeytales@live.com

Shannon E. Kennedy

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Photo by Joan Harrison