Thursday, August 29, 2013

Mass Confusion



Mass: a collection of incoherent particles, parts, or objects regarded as forming one body

Confusion: lack of clearness or distinctness; bewilderment



Despite my angst, I slept last night. Melantonin, an herbal supplement that helps regulate sleep, washed down with a chaser of tears, did the trick. As I drifted off, I asked my son for guidance. "You can talk to him anytime you want," the psychic John Edward once told me, "You don't need me to do that."

He didn't come. Instead, my first boyfriend, Peter Wolff appeared. Peter is a cop in real life. We have been friends since summer camp when, as young teens, we kissed, cuddled and chased each other across a 31 acre island inhabited with thick marsh, mixed forests, and sandy beaches. Here, Peter taught me how to sail and I taught him how to dance. Together we experimented with love - mixing tears and fears with bouts of unfiltered joy.

Throughout the years and I have always respected his honesty and sensibility so his vivid, ephemeral, visionary guidance was met with open arms.

In all his wisdom and grandeur, he stood in front of me, in complete uniform, and said, "You know what to do."

Honestly, I don't. I don't want my decision to be fueled by fear. The easy way would be to have the surgery, and to know the pathology, but if I have a complete cure response from the radiation why would I do that? Especially if I believe, which I do, that surgery spreads the cancer.

The problem is that my tests do not show definitively that I have had a complete cure response - meaning the cancer is gone. The tests are leaning in that direction but it is too early to tell. The radiation needs more time to take affect. "A few" lymph nodes were detected on the MRI which could indicate the disease is spreading or it could simply be the result of inflammation from the radiation.

My PET shows no cancer but a PET won't detect positive lymph nodes because they are too small. My CEA blood count is within normal range - this is another tumor indicator for patients with colorectal cancer. My CT and MRI show some rectal wall thickening that again, could be the result of the radiation.

If I listened to Memorial Sloan Kettering, based on a chest CT that showed a few sub-cenimeter masses, too small to biopsy or light up on a PET scan, they would have treated my lungs first with 4 months of chemo before treating my wrecked-tail. So, starting chemo ASAP and giving my tail more time to respond doesn't sound illogical. But I'm flying solo. I have no clinical data to support this.

As I mentioned in my past post, there are studies that show a similar reoccurrence rate (after two years) in patients that did not have surgery vs and those that did, but this was after they received EXTERNAL radiation with chemo. The primary roll of chemo, given before surgery, is to weaken the tumor and make it more susceptible to radiation. I can't find any data on people who had INTERNAL radiation, without chemo, and opted out of surgery. It makes sense that the external radiation kills more good and bad cells than the internal radiation does, so if my lymph nodes are involved they would remain out there, on a path of search and destroy.

When I was diagnosed with stage 0 breast cancer, against my doctors advice, I listened to my gut and opted to have a double mastectomy instead of a lumpectomy, radiation and 5 years of tamoxifen (a preventative drug). My final pathology report showed more cancer in the breast tissue than was originally detected so I know I made the right decision.

This is a completely different game. This time what I hear in my mind, are passages from The Scalpel and the Soul written by Dr. Allan J. Hamilton, a Harvard-trained brain surgeon.


RULE No. 20: There's no surgery like no surgery 

Surgery remains the "court of last resort" when less invasive and less dangerous medical therapies will not work or just fail. So when should a person consent to having surgery? One of two circumstances has to be met before proceeding with an operation. First, is your life in direct and imminent danger? The second is trickier. Ask yourself: Is my lifestyle seriously threatened without surgery?


Only I can know how I want to live. And only I can know how much I'm willing to risk to live the life I want.

Your love gives me strength. 


xo, MonkeyME

for a complete list of my ridiculous cancer journey click HERE

28 comments:

  1. This decision must be exhausting...I want to help you...but.. what the cop says makes sense you do know what to do....take a deep breathe and jump with both feet!! I love you Shannon!

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    1. NO sleep last night, completely different thinking today. I love the two feed jump visual. Thank you for loving me Sue, and I love YOU!!! xoxo

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  2. There is much good news here and yet still much unknown. How wonderful it would be to wake up and know exactly what to do, and not to waiver from that. I'm sure that's what you hope for. I wish that for you. Maybe you will know tomorrow or the next day. You are alone in your decision but we are all here to send you love and support. Find something that grounds you and sit with it. I know you love trees, as I do. Lean against an awesome tree and take strength from it. Perhaps your son will come and sit with you there. <3 <3

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    1. yes.... the TREES!!! I'm headed to vermont today Denise. I will do exactly that... find a tree and gain strength. Thank you for your love and support!

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    1. you are wonderful Cloudia! love to you!

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  4. Monkey Monkey Monkey. Not to rush the decision is the only advice I would give, were you to ask for it. Think it through. Your advocacy of your own health is powerful, and I trust it. I trust you. And I still always bet on the Monkey. Remember to consider what you want the most when your options are before you...what do YOU want? And if you need support, you know I'm here. In Jersey. When the traffic just don't flow...

    xoxoxoxoxoxoxo

    MG

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    1. flip flop, flip flop.... maybe the ponies will tell me what to do! xoxo

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    2. Perhaps there will be a pony named "Flip Flop"...for you to put a chunk of change on....or better yet "Tushy Girl".........Either way my money is on you...and I only bet on sure things.....xoxo....R.G.

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  5. May the Voice within you give you the guidance you need. Hugs and best wishes, as always.

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  6. Sending you peace and prayers, and if you'll email me an address I'll send the CD that didn't transfer via the web. Love you!

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    1. music is part of my healing so I welcome the CD! thank you Yolanda. love to you xoxo

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  7. I agree with your six wonderful friends who left comments before me, especially Susan! I envision myself writing those same words.

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  8. I'm literally running out the door to my next job. But I just saw where u posted this post. I so want to read it in it's depth but I have to wait till later. Promise I will come back as possible and read and respond. As always u are in my thoughts and prayers.

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  9. I suggest quiet time...as in meditating...the answer will come to you. I understand your fear... I have been there. How long has it been since your radiation again? You are correct...scans done too early after radiation can show false positives. Were you told where you are on the scale? Tumors light up on PET scans. I think the range goes up to 48...my first scan was 14 and I was told that is good. I had exterior 30 radiation treatments and chemo (5FU cocktail)... no surgery to remove colon...my doctor said he can remove it in future if it comes back. I do have colostomy bag though...cancer ate my sphincter muscles... I am 26 months cancer free. I have no intention of allowing that bitch in my body again! Take a few breaths and find some quiet space... xo Inge

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    1. sorry Julie, my comment was for Monkey...dang chemo brain!

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  10. So much to take and and decide upon. I'm wishing you guidance and support and love whenever you need it - including in this comment! ~Catherine

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  11. dear Shannon,

    you have so much going for you, and I, too, believe that you need more time to clearly evaluate your position. it's just so hard to attain a sanctum of quiet when one's mind is swirling and conflicted with so many of the unknowns. but gather up all the love being lavished upon you, all the hope, all the confidence and belief in you and your extraordinary ability to filter each aspect of the outcome YOU desire into your beautiful mind. envision you, sitting in the midst of what is being sent to you to help you, all of it forming into a beautiful shield, surrounding you to protect you from all the noise, and allowing you all the time you need to ponder and explore, give you blessed peacefulness, and quiet to listen to your inner self. it may not come right away - you may have to step out in the swirling for a while - but each time you return to your own little place of total love and the energy it produces, I bet you will find your answers. I will be there, right there, sending my love, and BELIEVING that you will find your way, Shannon.

    much love and light, XOXO,

    Karen, TC

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  12. {{{Hugs}}} to you dear Shannon as you sink into your gut and ask it the questions only you (and it) can answer. It is hard to decipher what is intuitive wisdom and what is just the fear talking. So ask yourself at a variety of times, in a variety of moods, in a variety of places. Keep a log. Long list wins. ;-)

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  13. U my dear friend are teaching and showing us "how to live our lives to the fullest".

    These are very difficult questions to be asked of u. U seem to make the right choices though for yourself. U think things through and don't jump in without knowledge and spiritual guidance.

    We walk with u. Take care my friend. Thoughts and prayers for u every day.

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  14. This is such a difficult decision. Of course i send you my love and I pray whatever you decide is for your best.

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  15. Whatever you decide, good luck! (That is really all we need!)

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  16. We love you, sweetie...

    *huggles*

    ~shoes~

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  18. Wishing you peace and a good bottle of wine.

    ~D.

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  19. Well, you must be Damn strong, because you have a lot of love!!
    I just got back home, and it was not the same without you there.
    <3
    Jesse

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Shannon E. Kennedy

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Photo by Joan Harrison