Sunday, July 22, 2012

MonkeY Me




I haven't posted in a very long time, mainly because I've been miserable and I don't want to paint myself as pathetic. After all, I am one of the lucky ones. I am cancer free. I am now trying to reclaim my life, but we all know you can't go backwards, only forwards. That being said, I'd like to rewind a bit to document where I've been. 

I am not embarrassed or ashamed of these pictures. Some of them are quite graphic and might be interpreted as disturbing, so YOU and YOU alone must choose to look or look away. And to the  lonely, pathetic, fat, ass-crack-showing, duck hater, who considers this pornography...well, feel free to blow them up, and tape them to your coffin sized, office wall.

This post is dedicated to all of us who walk this long, laboring, twisted road called Breast Cancer. My hope is that, with every step, you gather courage.


* * * * * * * * * *

The first piece of advice that stuck with me was, "this should be about cancer not cosmetics." This made sense to me. Ironically, it came from the same man who disfigured me - Memorial Sloan Ketterings Head Plastic surgeon, Dr. Peter Cordeiro.

When I say disfigured, what I mean is, during the reconstructive stage of my double mastectomy, after the breast surgeon removed my breast tissue, he opened up the pocket under the natural fold of the breast and went too deep. He then positioned my tissue expander too low.


From the beginning, I was convinced Dr. Cordeiro didn't do the surgery. This was based on the fact that I didn't see him before or after my surgery, and because both sides were positioned differently and the sutures were different. Instead, since this is a teaching hospital, I suspected that two interns did the surgery but after questioning Dr. Cordeiro he INSISTS he and he alone did the surgery.  So, lets give him credit for his workmanship!


The curved sharpie outline shows where the implant should end.
That bulge, below the sharpie curve is the bottom of the expander.


When you're going to your consultations please remember that breast surgeons and plastic surgeons are the same as used car salesman. At this point in the game, their main objective is getting your business. Make certain to ask your plastic surgeon AND your breast surgeon if they will be doing the surgery. Do NOT assume they are doing the surgery, especially if you are going to a large hospital, like Memorial Sloan Kettering.

Gather as much information as you can, go to as many consultations as you can stomach, and then TRUST YOUR GUT. Your gut will guide you. I promise you.

After my first fill (saline injected into the tissue expander to stretch the skin and pectoral muscle) I knew there was a problem. When I addressed my concerns with Dr. Cordeiro, I was told that the unevenness was because my breast surgeon was overly aggressive during the mastectomy and that any unevenness could be corrected during the exchange from tissue expanders to implants. 


THIS is a common phrase and its CRAP! I have pictures from scores of women who were told the exact same thing and their post exchange results are disappointing at best.

After a consultation with Dr. Pusic, another plastic surgeon at Memorial Sloan Kettering, I was told, very matter of fact, that I would not be symmetrical after the exchange but that I should not expect to be so and that she herself is not symmetrical. That snide remark made me want to slap her. Instead I smiled and walked out of her office.

True, most natural breasts are not symmetrical, but reconstructed breasts have the right to be symmetrical. The federal government agrees and mandates that all insurance companies cover any and all revisions so that cancer patients have symmetrical breasts. Even in the case of a unilateral mastectomy (one breast removed) your insurance MUST allow the non-cancer breast to be tweaked to match the reconstructed breast. This is our right and if that is what you want then DO NOT BACK DOWN. 


The two small bandaids mark the port to the tissue expander. Clearly, they are NOT even.

Incidentally, that bulge, on my left side (right lower corner in this picture) is an extended rib. Yet another unexplained side effect of my mastectomy.

Two additional consultations outside Memorial Sloan Kettering confirmed that my tissue expanders were not placed correctly, that the pocket under the natural fold was too deep, and that revisions were needed prior to the exchange.

As it turns out, just as Dorothy in the Wizard of OZ, I should have never left my backyard. After an extensive search of Tri-State doctors that would accept my insurance, I found Dr. Sandra Margoles, in Greenwich Connecticut - a 7 minute drive from my home. 

My initial reaction was that she was calm, compassionate, competent and clear-cut. Even so, I had my doubts. I'd been scorned and there is nothing more fierce and fragil than a victimized breast cancer patient.

Her revisions gave me hope...


but they hurt...


Dr. Margoles did her best to close the pocket under the natural fold that was created by Dr. Cordeiro. 

And then a weird thing happened... 
my left tissue expander collapsed. 

No one knows why it happened (don't lift heavy things). All I know is that when I told my husband, "my left mound looks smaller" and he said, "no, it doesn't," he was wrong. Or better, I was right. Yes, I realize this sounds petty but its nice to be proven right every once and awhile.

So... back into the operating room I go! 


Let's talk about this picture for a moment because it's an important part of our recovery.

When you have a mastectomy you will most probably have a sentinel lymph node biopsy if not an axillary node biopsy. The doctors and nurses will tell you that if you have a sentinel node biopsy you are NOT at risk for developing lymphedema but they are WRONG!!! The latest data shows you have a 3 to 7 percent chance of developing this non-curable illness but there is data that suggests that these statistics are grossly under reported.

Because I have joined the discussion boards at breastcancer.org, I know of numerous women who have developed lymphedema after a sentinel node biopsy. Because of this knowledge, I do everything I can to avoid it. Once you have it, there is no cure. This means, no blood pressure cups on arms, no IV in hand, no blood drawn from arm, no restriction of any kind on arms (no pocketbooks, etc).

Just wait till you show up for a blood drawing and tell them they can't do it from your arm. FIRST, you will need your doctor to state this on the script and even then, you will need to insist. Because of the repeat resistance I have experienced, I now tell them I had axillary nodes removed just to speed the process up a bit. You MUST be your own advocate. You have the right to do all you can to protect yourself against the side effects of cancer treatments.

Despite Dr. Margoles's best efforts to even me out, this is me, prior to my exchange surgery... 



400 cc tissue expanders filled to 370 cc's right, 430 cc's  left. 
(yes, I know, the right looks much larger than the left)

If I could do it all over again I would never allow a surgeon to open the pocket below the natural fold of the breast.  As you can see, once they do, it is difficult to fix. They'll tell you that they do this to create a natural (sagging) breast. Do you really want a saggy breast after all this? Call me crazy but I want mine perky and evenly proportioned. 

Two days post surgery, I am swollen, I am sore, I am medicated, but I am hopeful. From this point on, we tweak me. As the swelling subsides there may be areas of cosmetic concern, but it is a far cry from where I was back in March of 2012. 

I must admit, I have a major girl crush on my plastic surgeon. Why? Because she cares, she listens, she's smart, she's honest, she laughs at my jokes, she doesn't glam herself up or pimp cosmetic treatments out, she's my age, she wants me to be happy, she respects me, she makes time for me, and... she brings her mother to work. 

We all deserve this. Never settle for less.


Look how well my scars have healed! Next step will be nipples and then tattoo's to mimic areola, or perhaps tattoo's that express the real me. 


What do you think?

As Always,
xoxo, MonkeyME


Special thanks to Deborah, aka Whippetmom, at breastcancer.org, for your knowledge and guidance.


For more rants about my Catstir:

http://greenmonkeytales.blogspot.com/p/catstir.html



76 comments:

  1. Wow! What a great job. I am also a breast cancer survivor and am in the TE process now. I hope my results look as good as your do-over.

    Sorry you had to go thru that horrible experience at Sloane Ketterings. What a doofus doctor!

    ReplyDelete
    Replies
    1. Make sure you talk/message Whippets Mom on breastcancer.org. She's amazing and helped me through the process. I just went outside for the first time because a giant turtle was on our bridge. My neighbor saw me and asked how I was doing. When I told her I had my exchange she asked if I was going to get any bigger. :)

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  2. I think your new breasts look quite wonderful. And I am proud of you for sharing good information and advice to others. We simply don't know how important it is to be our own advocates until something happens to us...or until someone like you shares hard-won wisdom. I hope you will feel better soon.

    ReplyDelete
    Replies
    1. thanks for reading/looking and your positive comments! I've been absent from the blogging community as well. Time for me to catch up!

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  3. Holy Cow! You have been through so much, especially with the post-surgery consultations and corrections. It would be nice if my 50+ year-old breasts were symmetrical and not sagging. I would fight like hell for that if I'd been through your surgeries. Finding a surgeon that you trust is huge, so hooray for you and for your new perky monkey boobs:-))

    ReplyDelete
    Replies
    1. Perky Monkey Boobs, Perky Monkey Boobs!!!! Monkey jumping up and down, up and down, up and down!!!

      Delete
  4. Oh, my. I think your shape and size look PERFECT. You new plastic surgeon has done as good a job as I have seen anywhere by anyone. Amazing. You have wonderful symmetry which is what I desire.

    Thanks for sharing this. It is encouraging to see what can be done.

    MondaysChild (on BCO)

    ReplyDelete
    Replies
    1. without sounding pessimistic, I hope they stay! If they do, I'll be thrilled! I'm not BIG, probably a full B but thats good enough for me if it means I'm symmetrical! I wish you all the best too Mondays~

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  5. I think you are looking good. That you have courage that astounds me. That it is a GIFT to be alive!
    Glad you are. Don't 'should' yourself. You won! Do what YOU feel like, and I bet it'll be compassionate and wonderfully monkeyish!

    Warm Aloha
    to you from Honolulu
    Comfort Spiral
    <(-'.'-)>

    ReplyDelete
    Replies
    1. Cloudia!!!! thank you xoxo yes, it is a gift to be alive ~

      Delete
  6. You have been through a hell of a lot to get to where you are. But you now look great!
    How brave you are to share your photos with us.... We ladies learn so much from one another, and I salute you for sharing your experience with us. Xox

    ReplyDelete
    Replies
    1. okay, I'll show my "noobs" but my ass.... well, thats a whole other story!

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  7. Shannon, I will be back in a bit to read this I just wanted to say thank you for posting, I look for you and am happy to see when you show up!

    Wander

    ReplyDelete
  8. I recommend that you don't censor your writing. I highly doubt that you would be judged. There is a lot of love here, and even if someone did judge you, it would be very minor in comparison. Let Asscrack say what he wants, along with those with normal mental capacity.
    Jesse

    ReplyDelete
    Replies
    1. you know I always follow your advice jesse! xoxo but the real question is... why do I have, or allow asscracks into my life?

      Delete
  9. .thanks for sharing

    ReplyDelete
  10. Comments eaten shannon, a long fricking comment eaten!
    First...to the troll that boycotts your page...probably has a mind more twisted then the Berlin sex trade in the 20's and 30's (now that is some twisted stuff) get a life dirt bag!

    Shannon, so glad to see your post...please check in...I have grown fond of you and so I worry...strange I know but real.

    I had an er dr tell me on monday that sodium hydroxide was just an irritant ...as I was coughing and barfing blood ...dr's don't always know what they think they know...I get to go to bat for myself this week :-)

    Live for the sake of that one smile you see on a complete strangers face when you smile first

    Share with those that care for you, because when you do you heal a bit more and your soul gets nourishment

    And for fuck's sakes Shannon laugh, laugh as if your life depends on it...it might

    Wander

    ReplyDelete
    Replies
    1. I forgot to tell you I have a comment eater widget secretly embedded into the HTML coding. (I have no idea what I just said)

      Delete
    2. oh, and the troll doesn't boycott it, he prints out the pictures and passes them out to people in my neighborhood!

      Delete
    3. Free advertising...you are famous! ;-)

      Delete
  11. I think you look gorgeous and I think you are so strong.

    Some of my favorite tattoos I've ever seen are post-recon, and I think that no matter what you go with- whether something that looks like a natural nipple or something huge that blossoms from your breast and blooms wildly over your shoulders and arms, it will be just perfect.

    ReplyDelete
    Replies
    1. I'm going to take my time deciding. Start off with some rub on nipples, make some pasties, have fun experimenting. :)

      Delete
  12. You went through a rough and painful ride and came out looking beautiful! Hooray for you Shannon, this has all been very inspiring!

    ReplyDelete
    Replies
    1. Marty! we have to celebrate with cheeseburgers and bottles of this and that!!!

      Delete
  13. It took a lot of courage and caring to tell your tale and post your pics. Your new surgeon did a fabulous job, and I hope you're feeling as terrific as you look. Long journey, lady, but you traveled it with class.

    ReplyDelete
    Replies
    1. Susan, the sharing is the easy part for me. It's also a necessity. If I don't let it out, it haunts me... sticks deep in the cracks, wallows, aches, pains, punishes me... All that aside, yes... my new surgeon did a fabulous job!!! I'm so happy!

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  14. Love. So honest and brave.

    ReplyDelete
    Replies
    1. whoever you are....... LOVE, big and bold right back at you!

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  15. Green Monkey, you look fabulous darling. I know the road was rocky because I am going thru a lot of the same stuff right now.

    Thank you for sharing your journey and for giving others courage to fight like the strong girls we are. You are a true inspiration.

    Hugs, Digital Cowgirl

    ReplyDelete
    Replies
    1. Thanks! Reverse...ooops, I mean Digital Cowgirl!!! :)

      Delete
  16. Thank you for visiting my blogspot and ur comments. I responded on my blogspot.

    I have been concerned as to why there had been such a long time in between ur last blog.

    I have to say ur breasts look great!!!! U have been through a lot. Thank u for sharing ur pics. I had a different breast surgery myself 25-years ago. It is scary the unknown.

    To the insensitive brut who says ur pics r porn what an unintelligent and insensitive asshole. U will help many many many women. Obviously, even in ur pain and disappointment u pressed on to find out things. Some of us r made stronger than others. U fall in this category of a strong leader even though u r experiencing ur own pain and suffering u share. And it will help someone.

    Please know that I am cheering u on and watching for good things to come out of this traumatic event.

    Joyful that u updated with a post. I checked daily to see if u had.

    Once again thank u for the visit and the comments. I wait to hear a response from u.

    StormyDawn

    ReplyDelete
  17. Thank you Sharon for this honest sharing. I'm so glad things are finally looking better for you. Nice to know there are caring doctors out there. Blessings.

    ReplyDelete
    Replies
    1. Thank you Myrna :) the whole process is so much easier now that I have a compassionate doctor.

      Delete
  18. You are a fighter, Shannon! You've had to survive so much and refuse to let it take your spirit. Thanks for being such an inspiration.

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    Replies
    1. Thank you for reading Jamie. I remember hearing my dad tell someone, "she's tough, she'll be fine" ...I don't remember what it was about, and I'm almost certain he was referring to me :) I never did tell him about the cancer. He died suddenly, a month after my diagnosis. My best guess is that he knew and wanted to be in a place where he could help me.

      Delete
  19. Thank you for sharing your stories and pictures. Your surgeon did a fabulous job. Sorry you had to go through it a few times.your story and pics will help a lot of women. Thanks for sharing.

    Cindy

    ReplyDelete
    Replies
    1. Thank you for reading Cindy! I do hope they help. I've learned a lot from the women at breastcancer.org. It's so healing and helpful to connect with people that are in your shoes.

      Delete
  20. Sent u response to comment. Can't get thru to ur email. It is my computer not ur computer's issue. Technology love it hate it.

    ReplyDelete
  21. Shannon you are so brave and fierce. Your writing is raw and powerful. I applaud you for your tenacity and relentless pursuit of getting proper treatment. I'm sorry you had to do that in the first place but hopefully your words will help another woman in the future to be unafraid to ask questions before submitting her faith in a doctor. Your photos are difficult to view, I had tears in my eyes when seeing the beginning of your process. It's astounding to me that a doctor, a head surgeon no less, can allow that to happen. It's as if he expected you to accept whatever your body looked like because at least he removed the cancer and !wow! shouldn't you be so happy about that???? I'm happy that you found a true surgeon and you now look pretty darn good considering what she had to work with!

    And to the asswipe who prints out your pictures to "share" - GO BACK UNDER THE ROCK YOU CRAWLED OUT FROM YOU PERVERT!

    ReplyDelete
    Replies
    1. It's such a big difference! and mainly, I feel whole. I feel normal (or as normal as a green monkey can be). Thank you so much for reading and commenting.

      Delete
  22. Wow, the plastic surgeon who did the revision did a wonderful job! Your breasts look terrific, not sure if I am seeing correctly, but it looks like the one side evened up as it healed, after she fixed the below the fold? they look symmetrical to me!!! and your scars are barely visible. Thanks for sharing your journey and images, they are very helpful to women, like me, who are trying to understand their post-mastectomy options.

    ReplyDelete
    Replies
    1. So glad to read that! We have many options. Tissue Expander to implant is no picnic but it was the only option that made sense to me. Best of luck to you and if you ever have any questions please feel free to contact me. Best, Shannon

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  23. I hope u have being feeling well my friend. U have been in my thoughts these last few days.

    I will be reading all ur October blogs Sunday. October is my favorite month.

    ReplyDelete
    Replies
    1. I'm THRILLED that you're reading me! I'm good :) trying some rub-on nipples this morning. Will post it later today if all goes as planned.

      Delete
  24. Joyful to hear u r well. I am fixing to head to a historical cemetery here in Memphis. If I can get my blogspot or Facebook to allow me to post pics I will. I like to post a photo to go along. However, we have been having issues with computers

    So--

    Something I would like u to think about and u will have plenty of time.

    I would love to visit New Orleans at least once a year. Unfortunately, I cannot do it this year as I am already committed to a conference in Mississippi for October.

    But I would like to attend the Voo Doo Festival in 2013. October is my favorite month. I am going to work towards this financially.

    I ,as well, plan to travel to Savannah GA.

    Those r two destinations that r in driving distance for me. The pups always have to be with me. Not 24 hours a day but close enough so I can watch over them. I trust very few with their care.

    Anywho give the New Orleans some thought. Maybe that can become our meeting spot and time to spend together. New Orleans in October.

    I look forward to ur pics. I think for me I would do puppy paws. I am all about puppies. I have impressions of real puppy paws on me all the time because Buttons thinks his job is to attach himself to the upper half of my body which means his paws r always somewhere on my body.

    Gotta run before everything closes up by five.

    I have really enjoyed our connection lately.

    Truly u r very spiritual and loving.

    Kindred spirits.

    PS: I put Pepper's story up on my blogspot.

    I have a few more to share regarding me and Micky's friendship. Some I may not be able to blog about cuz she wants to keep one a secret from her family. I have honored her request for 20 years. She will tell u herself because the act directed her to where she is in life today. 20 years ago the secret sealed our friendship.

    StormyDawn

    ReplyDelete
  25. You look gorgeous. Thank you for posting the photos and all of the information about your experience. Your dad was right about you.

    ReplyDelete
  26. I can't wait to try on some of those rub ons! I had them put on me a few weeks just to get an idea of how my new nips would look, and in a instant my brain felt better. I looked normal. My breast looked hot! For all the shit we've gone through, it was awesome to feel "normal" again visually speaking, thanks for sharing!

    ReplyDelete
  27. I love you Monkey! You are beautiful no matter your frontal bumpers... At least I will have your green color to comfort me this year on the playa.. I will miss you though. So glad you are writting, and adventures to Omega institute.. AWESOME!!! Keep taking excellent care of you. =)

    ReplyDelete
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  49. wow Monkey..!! I was just reading posts on breastcancer.org. I had done a few posts on there just recently..I had my mastectomy also at MSKCC in June 2011.Had tissue expander put in at the same time as mastectomy.BUT..BY DR. JOSEPH DISA..Whom I adore. I have known him for many yrs..he did a few minor plastic surgeries on me for my skin cancer.I'm soo sorry that U didn't choose him for your pl.reconst surgery.he is a very compassionate Dr. & understands..totally. He did a wonderful job on me with my 1 implant. I didn't get my good boob done..cause..I wasn't a good candidate for thatsurgery..since I have other health issues.. It bothered me a lot at first..but to be honest.IT DOESN'T MATTER ANYMORE. I DON'T EVEN CARE ABOUT IT.. also..I decided against a nipple as well. Your new surgeon sure knew what she was doing..after the mess dr. coderio made for U. Imagine he is the HEAD OF PLASTIC RECONSTUCTIVE SURGERY..OMG..!!!..I am shocked ! Well I will now be happy to follow your blog..in fact..I just saw Dr. Disa for a check up on my implant..& he said it was just PERFECT! I WAS LUCKY..PLEASE TAKE GOOD CARE..& THANKS FOR THIS WONDERFUL BLOG..~HOPEDREAMS [ON BC.ORG] ok..i'm not symmetrical..but I learned to joke about it.. calling it a new oriental dish..called wonhunglo LOL

    ReplyDelete
  50. Hi Shannon, I was sorry to hear about your story. I had the same PS at MSKCC and had a similar experience. Wondering if you would be available to have a chat about him?
    thanks,
    Susan

    ReplyDelete
  51. HI Shannon,
    I had the same surgeon at MSKCC. Unfortunately had a similar experience. Would you be up for a chat? thanks,
    Susan

    ReplyDelete
    Replies
    1. Hi Susan. Yes I am very happy to connect with you. Please email me at greenmoneytales@live.com.

      Delete
  52. Hi Shannon, I was sorry to hear about your story. I had the same PS at MSKCC and had a similar experience. Wondering if you would be available to have a chat about him?
    thanks,
    Susan

    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