Wednesday, July 10, 2013

The Voyage

A recount of the simulation preparation to begin my radiation treatment.

In short, the voyage was catastrophic. I knew it wouldn't be pleasant, but nothing could have prepared me for the surge of physical and emotional agony that crashed into me.

I still can't talk or type about it without crying. So much so that my laptop now makes a Snap Crackle Pop sound that I suspect is the result of tears spilling into the keyboard.

I am ashamed to tell you that I behaved like a child, or more precisely, like a spoiled, toddler of two. My tantrum included kicking, screaming, crying, and pouting. At times I closed my eyes tightly and refused to answer questions or acknowledge anyones presence. I was angry. I was in pain. I was frightened. But mostly, I was beaten.

It was NOT a day to live in the NOW. It was a day to focus on medication and imagination. And so I set forth a plan. I built an UP MY ASS Playlist - songs suggested by family and friends - and mixed it with a double dose of valium. I also shaved my legs and had my first brazilian waxing. If nothing else, I would arrive well-groomed.

I was convinced that, with the aid of these three things, I could work my way through it. I would visualize myself on a tranquil, Caribbean beach interacting with friends and family that sent me their love via songs. And I had a secret weapon. I was bringing my son Kerry with me. I talked to him about it during numerous sleepless nights leading up to the procedure, and he agreed to meet me on the beach.

And then everything went horribly wrong.

To my surprise and chagrin, this is what awaited me inside exam room 2A ... 

An old school, tightly enclosed, MRI machine with some sort of no-joystick fixated in the center of the table.

I immediately popped my second dose of valium (no water required) and focused on the pillow.

I was then informed that internal MRI coils would be part of the simulation. For those of you who have ever had an MRI, imagine claustrophobic panic combined with banging, buzzing and clanging, erupting INSIDE of you.

There was a team of eager eyes standing by - Dr. Munster (code name), two technicians, one nurse, and 5 fucking residents.

I hate residents. I don't care how irrational that sounds. Residents are the reason my breast cancer reconstruction went horribly wrong. Residents are nerds. Most residents aren't even in the department they want to specialize in. They are just going through the motions.

These residents looked younger than my daughter (age 22). These resident looked more nervous than I did. These residents wore thick black glasses, uncomfortable smiles, and wrinkled clothing. They didn't even advance to a level where they'd earned a white lab coat.

"Get them OUT!" I ordered.

And this is when I made mistake number one.

"Please," begged Dr. Munster, "this is, after all, a teaching hospital."

I really like Dr. Munster and not since my teenage daughter's Christmas wish of, "I don't want a boyfriend, all I want is a puppy," have I heard a more compelling plea.

So I let them stay.

"Thank you," responded nerd number one - the shortest and geekiest of the group.

"Go fuck yourself," I responded.

I forgot to mention that things got ugly inside that MRI room. In truth, I was worse than a terrible two year old. I was an obnoxious, belligerent, beast.

Both white coat technicians were Asians. One was a nondescript male and the other a tiny, frail looking female. Like a hawk in search of prey, she is the one I focused in on.

"Here is my iphone," I instructed, "it's keyed up to play my UP THE ASS PLAYLIST," dock it into your system and get it ready to go.

"I can no do that," she answered. "pray Pandora ladio."

"I don't want Pandora radio, I want my playlist!" I insisted.

There was no way of winning this argument and when I came to the realization that I couldn't listen to my playlist, my key coping mechanism, I LOST MY MIND.

It was at that exact moment that they rolled THE VESSEL into the room and I got my first glimpse of it.

In fairness, it's girth was smaller than I expected, but it's length was monstrous.

I'm afraid to show you. I'm afraid I'll lose you. But I can't help myself, so if you're already sweating, look away...

(notice the size of the sharpie in relationship to the vessel)

What made it even worse is that I was positioned on my back with nothing but a few towels under my legs. Call me crazy but the correct position should have been knees strapped behind my ears.

Lidocaine laced lubricant, combined with 10 mg of valium and 5 mg of ativan, was not enough medication for my body to submit to being sodomizing.

"Relax," ordered Dr. Munster.

"I pray music for you," said the lightweight, Asian technician. And then she put on smooth jazz.

"NO MUSIC!!!" I shouted.

"Pandora great, you pick song you rike, they pray it," she explained.

"I KNOW HOW PANDORA WORKS YOU...." I can't finish my vulgar statement. You'll never forgive me if you knew what I called this innocent creature.

At that point, in sheer horror, the residents scurried out of the room and a frustrated Dr. Munster leaned within inches of my face and stated with calm, commanding conviction,"Pick an artist NOW or I'll queue up elevator music."

"Old school rap," I answered.

And that was that. Next thing I knew I was alone in a room, encapsulated in a radioactive machine with a vessel up my ass, headphones on my ears, listening to Biggie, Tupac, Snoop, and Dr. Dre, serenade me on my very own private Carribean beach.

About 10 minutes into the procedure, "Dear Mama," by Tupac, came on. Dear Mama, is my Kerry to Mama song. I imagine him singing it to me when I'm feeling extra low. In that moment, I have never needed it more.

I have not cried that hard since the day my son died. Only this time, I cried because I knew he was with me. It was exactly as I had dreamt on the eve of Mother's day - the two of us on a beach with the water sparkling and the sun strong. Kerry looking uncharacteristically pirate-like. Kerry comforting me, assuring me that I was loved and appreciated.

No matter which way this cancer battle goes, I win.

xo, MonkeyME and Kerry

Thank you to everyone who suggested music.
I still have 3 days of treatment and I'm updating music as I go. 

For a complete list of this ridiculous wrecked-tail journey see:


  1. Having a bunch of people around when you're faced with THAT, no wonder you had a tantrum. You must be completely exhausted in every way possible. But you are fighting and your sweet boy is with you. I hope each of the remaining days passes quickly and then you can rest with whatever music you choose. I am so angry at the horrible disease that has settled in your body.

    Big hugs for you, dear lady.

    1. I still feel like I have to do more than apologize to the asian technician. I am exhausted and I am at the beginning of this battle. it's like a marathon and I'm at mile 5.

  2. That sounded absolutely horrible. Of course you were angry. I am so glad Kerry was with you on that beautiful beach, though. I am sending positive thoughts to you every day. As far as music goes, I, too, am a big Eva Cassidy fan. She is on my "Cry" CD. Do you remember that? Very healing. With much love,

    1. I do remember that Bev!!!! I didn't know she died from melanoma and at such a young age. And her care was here, at Johns Hopkins. I soooo look forward to a normal Tuesday night, when we can enjoy wine and lobster clobb.

    2. Are you going to the playa this year? B Rad from Phx.

  3. The tech will be ok, if she is taking anything personally she will have to learn to not do that. I had a pt throw her cane at me, and look at me, perfectly normal!!!



    1. Ha!!!!!!! MG :))))))))

      I confessed my guilt to Dr. Munster's PA, Amy and she said, "don't worry, she barely understands english"

    2. Ah, so your timing was perfect!! Now she knows a new word or two!!!



  4. I have screamed and sworn at medical professionals more than once. Once when a doctor (trying to save my life) rammed his fist and forearm into my vagina up to his elbow, while I was on Demerol. The Demerol was not enough, it took four people to hold be down, while I wailed profanity at the top of my lungs. I'm sure two valium could not touch your pain and discomfort. Maybe they should try some Demerol.

    Sometimes a huge fit throwing is the best course of action. You gave the residents some valuable education about the nature of being a "healer." To be a good healer requires compassion, patience, and thick skin. "It is a teaching hospital after all."

    Keep going. Keep writing, everything you can. Many of us are around you with loving understanding, if not there in person, (I wish I could be there to scream some profanity too) in spirit and love, including your beloved Kerry.

    Do not second guess your behavior, those people are there to serve your needs. The fact that they failed to make it more like a spa treatment, tells be they aren't trying hard enough. I will pray for them to be better equipped to anticipate your needs.

    I love you, Inky

    1. Inky... I love you too.... it's funny you brought up the "spa treatment".... Dr. Munster actually apologized for the disorganized set up of the room and the "lack of ambiance" .... maybe you called him?

      part of the problem is that this is so new, they're learning as they go along. yesterday - my second radiation was NOT good. I'll save the gory details for another post.

      thank god for slice and for all of you. I really do plan on meeting you on the playa but I'll need to have one of those high tec monkey masks. LOVE YOU!!!!

  5. Replies
    1. I show up everyday with my backpack - the same bag I've charted to burning man for the past 10 years. It has a poem Jesse wrote on the inside flap. It has your New Zealand sticker glued to the front. I have monkeys tucked inside. I feel like I'm taking all of you with me and it truly calms me.

      love, love, love ....... xoxo

  6. My word, Shannon. That was awful. Simply awful. If there is a silver lining, it's that you were surrounded by the people who love you most. And while you are presently documenting a horrific portion of your journey, your writing continues to "radiate" love, life... and love of life (despite the monkey kicking and screaming). I am in awe of your strength, to not only endure, but to share your story with the rest of us and everyone else fortunate enough to stumble upon it. Much love and light to you today, tomorrow, Friday and throughout the journey ahead.

    1. what I was thinking about when I was writing the horrible parts is that I'm giving ammunition to the monkey haters - and they are out there in full force. Regardless, I am, if nothing else, honest.

      if I don't share, the ugliness will get stuck inside of me. I guess its my own personal confession. thanks for being out there. by the way... my PA is adorable. she wears the cutest little shoes. I have yet to tell her about you. Maybe today. Yesterday I was a mess. Couldn't even get myself to shower before treatment. I'm afraid I'll need to go to Betty Ford by the time I'm all done with this. I keep reminding myself that this is the treatment I chose. I don't feel strong Jay. I feel beaten. promise to put my best smile on for polo!

    2. You don't need to feel strong--absolutely no one in your position would or could. You simply need to be strong enough to get your wrecked tail out of bed each morning and take on the day... as you have for the past 18 months. You're a friggin' Adonis as far as I'm concerned.

  7. Dear Shannon,

    ERGH!!!!!!!!!!!!!!! You should have been flying high as a kite for that procedure. I don't get why those docs/residents/etc. don't get that. I can *totally* understand why you became unhinged when they told you they can "no play" your playlist. It was your last semblance of control over a very uncontrollable situation.

    Geez Louise, I'm so sorry you are going through this and sorrier still that they don't make this procedure (as someone above me so eloquently stated) more spa-like for you. It should be like Canyon Ranch of the East when you walk through those doors.

    I am infuriated for you.

    Sending you {{{{{{HUGS}}}}}}, a thousand of them!!!

    1. Renn, thanks for checking in on me. most of the breast cancer ladies have looked the other way. My reality is to frightening, and I get that.

      I remember how bad that breast MRI was. I also had a technician say, "nothing is as bad as the breast MRI" well.... its all bad but this was super bad.

      two more days of radiation. yesterday was just terrible. Mark's going to have to wheel me in today. that's how high I'll be.


  8. OH My Shannon, Much love to u, I wish you the best. I am so sorry you have to go through all of this mess...

    1. when I read "oh my Shannon" ... I know its Marilyn :) it will all make sense one day. much love to you my friend. xoxoxo

  9. Yeah, I hate friggin' residents too. But no matter how you acted, you were educating them and they will benefit from it. And I'm sure Dr. Munster has seen it all in his career, so I wouldn't worry about him either. I'm sorry the procedure was such an ordeal but I'm glad your son was with you. For him, time, distance and life/death are no obstacles to being by your side.

    1. ....death is not an obstacle for him being on my side. I LOVE THAT!!!!!!! xoxo

  10. hang in there.. thinking of you often. Glad you told off the residents.


    1. Hi Sharon, love hearing from you. I hate losing control like that...or more important, I hate feeling out of control.

  11. thinking of you and sending hugs to you and Dr. Cook! through it all you have not lost your
    "edge" to your writing! You still managed to make me gasp and laugh out loud, while still making me feel the helplessness of your situation!
    Love you my teatimefriend!!

    1. shhhhhhhh.....what teatimefriend? :))))))))

      Dr. Cook should have leant them his lab coat. thanks for staying close Maureen. it means the world to me.

  12. Shannon....My heart hurts for eyes are crying right along with you......and my filthy mouth is cursing...without even uttering a word. Having not spoken to you the past few days...saddens me...not to worry...I more than understand.......I am so very much like you...when the going gets tough...I cocoon myself in my special little corner of the sky. That is how I made it through my chemo / radiation...and came out on the other side. I can't wait for you to join me there.......xoxoxo.....Ricki

    1. we are so connected. we are so alike! yes, unable to talk about it, in the cocoon. will pop out soon. loved hearing your mom's voice. thank you for sharing her with me. yesterday was so bad that I don't think I can walk in there today - I want to be so high that I need a wheelchair.

  13. dear Shannon,

    you did not deserve to go through such hellaciousness. I hope the education you provided to the residents was driven home and never leaves their minds - GIVE PATIENTS THE DRUGS THEY NEED!!! you have nothing to be ashamed of. I can't even imagine the horror and degree of pain and anxiety you endured. it makes me want to scream every expletive, I am so pissed on your behalf.

    but at the end, your beautiful Kerry was there with you, just as you dreamed it would be. how wondrous. and now you have that glorious dream that came true to hold close to your heart.

    reading your writing is like riding every emotion you experienced - the whole gamut from beginning with the oh, no! horror, then more horror, then at the end with divine sighs, picturing you and Kerry holding on tight to each other. keep writing! I wish you being much more at ease and and a total absence of pain and horror for the next rounds of treatment.

    love, love and more love,

    Karen, TC

    1. yesterday was sooooo bad I asked for more drugs. All they had was ativan. this stuff does not work on me. a monkey friend of mine in the medical field said it works better in an IV so I asked for an IV but they couldn't get it going fast enough so I asked if I could snort it. they said I couldn't but they also agreed not to watch.

      thank you for your love Karen! xoxo

    2. Oh my, we need some Contac capsules STAT!!!! Oh my honey, those mothers, why the FUCK couldn't they sedate you???? They knock you out for a fucking colonscopy!!!! Bastards!!!!!!!



  14. OH MONKEY!!!! everyone else has written such beautiful words to you. I thank them all for expressing what I can't seem to right now- I am too moved by your stupendously huge brass BALLS and, simultaneously PISSED by the fact that they should have got you REALLLLLLY relaxed and in a very happy place, and didn't. Thank God Kerry was with you at the exact perfect moment. <3 Thank you Kerry!!
    Your courage and tenacity continues to blow me away.
    P. S. maybe they will let you wear Dr Cook's lab coat next time. <3
    I love you!!!!!!!!!

    1. I need to get Dr. Cook in there! He has a wonderful bedside manner.... love to you my dusty bunny!

  15. When I had my rectal ultrasound they had to send me absolutely to sleep; I just kept holding on to the technicians hand and stopping her from moving it, it just hurt so much. Thank goodness for the Propofol! I think she must have been a tractor driver before. It is one of the worst tests I ever had, so I am right there, I really get you.

    1. rectal ultrasound.....ugh! "tractor driver" ha!!! It is so nice to have someone out there that has been through it.

  16. WTF? I mean you didn't want the residents and they stayed. You didn't want Pandora but you were overruled. F*ck them all. Call your doctor, department head, someone and tell them you are the patient so you are in charge. It goes your way. Big hugs.

    1. somehow I missed a big stack of comments and I love comments. I think my downfall is that I want them to like me. I think I want this because if they like me they'll take better care of me (?)

      regardless, thank you for reading Caroline! hugging you back!

  17. Oh my--

    U have me crying at work as I read this--

    I am typing this through tears. And I don't give a "fuck" who sees me up at work right now.

    I just want to reach through time and distance and hold u. Hold u like I would my daughter if I had one. And let u just cry cry cry cry and I will cry with u.

    I have been marking on my calendar the days off. I thought it started on Friday. I know I was thinking well with cancer treatment maybe they go through Saturday and Sunday. And on Tuesday I said to myself she is done with it for now. I would look at the calendar on my refrig every day and see those days marked off. I put significant events on this calendar on u were right up there on my calendar.

    I don't have any words that will help ease ur pain and anguish.

    Residents--I don't like them either and order them out of the room too during procedures.

    Oh Shannon my hearts aches for you.

  18. God... and now I have to go to class and try to teach while I have all of this heaviness in my heart for you...

    I have no words for you, dear...

    I'm glad that Kerry was there with you... for you.

    Again... I have nothing...



  19. I am amazed that with all you are feeling, you can write so well. It is perfect. You impress me all the time, and I am proud to know you.
    It is important work, and at least a few people will read your blog, and be better able to handle similar situations.
    Even in this darkness, you shine!

  20. I might have tried to kick some intern ass but, even I wouldn't have given them as much shit as you did. Every time they bring out a tray of instruments I try to divulge the secret rebel base but, it never works.

  21. That sounds like some fucked up shit girl. I probably would have done the same exact things you did. Maybe your anger and lashing out was not so much about the residents and not being able to listen to your music list, but from feeling you have little control over your life right now... The upside is you did it! Your feistiness is what will help you kick cancer's ass (pun intended) are already winning by doing what is required...not everyone has the emotional will power as you. Use your anger to your advantage and focus on killing off the cancer cells... then when you are home...I suggest you meditate, journal or blog like you are now...release your anger and focus on peace and wellness...visualize yourself doing things you enjoy doing...YOU are a WARRIOR first and foremost and you will beat this! even if it means kicking and screaming... I am always send you positive thoughts and prayers... Inge

  22. I'm glad you got my age correct, but only if you could tell me when my birthday is!
    I know Kerry is there with you. I know that.
    I've been here in greenwich crying a lot... because just, feels good. I think about you constantly and when I think about what you are going through I can't help but cry. I can't help but be furious, because I do not want this to be happening to YOU. But it is, and we can't do anything about it.
    you are strong
    you are.. you.
    its going to fucking suck for a while. but there will be brighter days ahead.
    oh and the point of me telling you that I have been crying (bc you know i don't like to) I cry to this song often. I don't even know why. I just feel like it has so much emotion, and all that i've built up releases when I listen to this. I scream I cry....I just let it all go. I'm not saying I want this on your playlist but listen to the whole song. 3 Libras- A perfect circle

    and breathe me by know that one

    oh and I hope you have some of your favorite BEASTIE BOYS on that playlist of yours

    1. I love you sweet Lindsay girl of mine.... thank you for reading yo mama. thank you for crying with me. together, we'll get through this. i promise.

  23. I have no idea what to say to you. I don't know you. You don't know me. But I've been following your blog for quite some time and I don't want to comment because I have nothing poignant, original, or heartwarming to say. Yet. I feel I must let you know that I stopped by. And you made me cry. I think about you. And I even pray for you. Even though I don't know you. This makes no sense. You don't need sympathy, you need healing.
    And yet. I offer:

  24. I don't know if you read my other comment, but the radium seeds worked well for prostrate cancer.

  25. Dear mama was especially meant to go to you. Munster seems perfect to be your doctor! It is so much to go through, but you will do it--you marathoner, business owner, mother, grandmother, wife, friend, jazz fester, Santa conner, burner, and so many more! The medical team, and your monkey team know that this is not easy or fun....but there will be fun....I promise! Love, rainbows, smiles, sunshine, flowers, birds chirping, blue skies, ocean, and decks:). Keep on rocking! Superstar! Earth daughter miss mary xo

  26. Hi Shannon,
    This post is so powerful, it's actually left me at a loss about what to say or add. I completely agree with Caroline's comment up there. WTF? Why couldn't they be a bit more accommodating to what would make YOU more comfortable, or at least try to be? I'm really sorry for all the misery and for all the tears. I also want to say, I'm sorry about the loss of your son. And your reply comment about the bc ladies made me a little sad. I promise not look the other way. Please keep writing.

  27. They knock us out with fentanyl for a colonoscopy....I was told they use it because it's fast-acting and also quick to wear off. Seems as though they could do the same for these traumatic procedures, or at least something more powerful than what they gave you. I finally thought of a song that might suit your journey: Adele's Set Fire to the Rain. Most of all, I wish you blue skies and bird songs and healing energy.

  28. Shannon, I agree with practically everything that's already been said. I can't believe how insensitive the doctor and other personnel were! Besides the fact they should have made it a much more pleasant "spa-like" about hiding that ghastly Vessel??!! YOU didn't need to see that! I don't think you acted poorly, at all. I think you demonstrated your you weren't going to take any sh*t from anybody...and that YOU were the important person in that room. Your writing is so beautiful and powerful and strong....just like you! I hope you know I think of you daily, and I send big hugs and love.

  29. All done here Honey, one step at a time, next stop Saratoga and the Ponies, can't wait to be home, till we need to meet again Fells Point, done with this town!!!

  30. Hey,

    Hoping things are well - today - and *wishing* only good things for you tomorrow.

    (Repeat as needed - and add red wine to stay fluid.)


  31. I didn't want to read this! I didn't want to know... And yet your writing didn't let me go.
    (rapped to the tune of Dear Mama)
    Your writing is relentless. No doctor can take that but they can clearly inspire it!
    I'm so glad for the win at the end.

  32. Shannon, to make an omelet requires the breaking of eggs. I can empathize your discomfort after a lifetime of Dr's (some better that others) giving me care. Find me on the playa by going to Playa info and looking on the big message board outside the tent in the lower left corner. Look for The Tribe"


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

Shannon E. Kennedy


Photo by Joan Harrison