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.
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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?
Special thanks to Deborah, aka Whippetmom, at breastcancer.org, for your knowledge and guidance.
For more rants about my Catstir: