Bringing Back Me

It’s a strange thing when life hands you curve balls you think you can handle and then come to find out that no matter the fortress of positivity you have built around yourself; no matter how much you have stacked the deck in favor of hope verses despair, that sometimes, you just have to give in to the fact that you are human and your life story isn’t one hundred percent yours to control.

I’ve been coming to terms with this new narrative since this past April, when after another reconstructive surgery to remove and replace (AGAIN), a contracted breast implant and then a subsequent lymphedema diagnosis, I was still in a whole lot of pain in my chest region and frankly, most of the time I felt like a truck had run over me. In addition, I was emotionally drained and felt the rock of my faith crumbling.

My happy go-lucky self had become a sort of hollow shell. You know, the kind of shell that covers a piece of candy…the chocolate rich and decadent, but the inside is a concoction of everything you hate.

For a positivity blogger, that’s a death nail and something I needed to get my mind around and around pretty quickly, because as I’ve said all along, I do not like to wallow in negative space, not ever!   At first, I focused on working on a children’s book my friend and I are putting together.  But I couldn’t focus on that either.  I felt absolutely zero joy…and that was not acceptable to me, if only for the reason that the book is too damn good and deserves a joyful launch. I also deleted my Instagram where I was posting daily positivity photos.  I felt like a phony pumping positive photos into the internet stratosphere, when I was feeling so negative about life and myself.  My camera lens no longer automatically pointed to magical images of positivity.  Words of wisdom no longer popped automatically in my head. 

I felt, well, I felt kind of dead inside.

So, I decided to take a break from blogging and writing and spent my time instead on a quest to find out what the hell was wrong with me. 

Now a whole lot of people, and I mean a whole lot of experienced medical professionals, had told me over and over again that my body had been through a lot and it was going to take time to recover.   Cancer, the bi-lateral mastectomy, colon resection, gall bladder removal, blocked bile duct repair, hernia repair and hysterectomy, in addition to radiation and reconstruction, not once, twice, but three times, all, were equally capable of taking a major toll on me.   It was normal to feel tired, anxious, impatient, wanting for life to go back to as it once was.   I had things to do, places to go, this was all so inconvenient.

“You need time to heal Anne,” they would say. “Each surgery is like setting the clock back in your recovery process and you aren’t being fair to yourself expecting things to move so quickly.”

But they had moved quickly for me and that was the puzzle.   The physical things that needed fixing I could get my mind around and seriously, those things, while not all easy to recover from, seemed for the most part, at least manageable.    You prep for surgery, you have surgery, you are given a list of things to do and not to do in recovery, you obey the list and poof, in a matter of months, sometimes sooner, you are on your way, to a less dysfunctional body.  I bounced back from each surgery like a rubber ball…over and over I’d take a pounding and I just kept bouncing.

But I had had a lot of surgeries by anyone’s standard, sixteen in 36 months, the process of prep, surgery, recovery was exponentially adding up to a whole lot of body dysfunction for me, so it was very reasonable that I was hitting a wall of sorts in my recovery process.

Depression came to mind and well, I had days when I did personally acknowledge that is how I felt, “Depressed!” But what I was feeling seemed to encompass so many different things…it wasn’t one specific thing…it was a whole jumble of things that had just felt off since June 2016. I’d have good days, truly good days, followed by bad days and none of it, given how quickly I’d recover from each surgery made sense. When I felt sad, I talked about it. I embraced it, acknowledged it and then turned it over to God. I wasn’t walking around feeling sorry for myself. I truly felt like there was something obvious I needed to change and if I could just figure out what it was, it would set me back on the right path.

Maybe I just wasn’t giving myself enough time to heal properly on an emotional and spiritual level?  Maybe I had too quickly jumped into focusing on the blessings, instead of dealing with the real realities of what it takes for a middle-aged woman to recover from so many major surgical procedures?  I mean cancer is a big enough battle alone, and I had tossed stones at Goliath’s forehead time and time again in the surgery room. I mean it was possible that my humble version of David had merely run out of stones to throw at Goliath, right?

Maybe.   Maybe so.   But as I carefully dissected each and every medical procedure I had had over the past 36 months, it seemed that the source of all of my setbacks to complete recovery seemed to have something to do with those two fake orbs resting on my chest. 

I should have recognized how I thought of them from the beginning…they were fake. They were not me.

I thought back to June 16, 2016.  I remember that day so well.  For fifty-three years, I had gone without having a major health mishap.  I had a few diverticulitis attacks that were not fun and once had a bad case of bronchitis, but for the most part, my health was pretty much normal and my hospital stays limited to having babies. In my world,  you get sick, you see the doctor, get an antibiotic and back to life you go.

But a bi-lateral mastectomy was different.  I was going to be losing a physical part of me.  An important part of me that had been with me for over half a century. A part of me that cancer had stolen.

The idea of not having any chest at all was really hard to get my mind around given how overwhelming just coming to terms with having breast cancer is.   I initially scoured the internet looking for articles on what it was like for women who had a bi-lateral mastectomy and no reconstruction.  I had no basis to understand what that meant in real life.    But, out there in internet land, there was pretty much nothing about anyone who chose not to have reconstruction.   I mean, “why would you do that”, when in fact, even the language used on respected sites like breast cancer.org pushed reconstruction as a way for a woman to “get her body back”.    

So, almost as if in a trance, I began to click on reconstruction articles and suddenly ads, tons and tons of ads for Plastic Surgeons scrolled across my screen…fake boobs were everywhere. Whatever I wanted for my chest was at my disposal.  Size, shape, type…you name it…for a fee, I could look like whomever I wanted to.

Cancer, schmancer!  Girl, you are going to be better than before.  No one will know.  No one.    

My eyes were dazzled by the ads.    I remember wondering what my chest, the chest that nursed my three babies, would look like if I didn’t have reconstruction, what would it feel like?  Would I be able to face myself in the mirror without breasts?  Would my husband still find me attractive or repulsed by my flat disfigurement?  Would my kids be embarrassed looking at me?  My friends find me freakish?

Dreams, night terrors really, would plague me with strange faces all laughing and pointing at my missing chest.   I descended rapidly into a world where, for the first time in my life, what strangers thought of my chest, actually mattered to me. 

And it was in this state of mind that I was asked to choose whether or not I wanted reconstruction to be a part of the bi-lateral mastectomy process.   

To back it up a bit, after a couple days of internet scrolling, I chose reconstruction pretty much without hesitation.  Specifically, because I felt it was somehow what was expected of me.   Oh certainly, not by my husband, not by my kids or extended family or by anyone I really knew and to be fair, not by my general surgeon either or the multiple plastic surgeons I interviewed.  Even the plastic surgeon I ultimately selected said over and over again that the choice to reconstruct was up to me.   But as I said, I had no female role models with which to compare to reconstruct or not to reconstruct.  The only thing I had in my wheelhouse was the internet images from various plastic surgeons of successful reconstruction procedures and multiple conversations with my chosen plastic surgeon. And all of this at the same time I was processing actually having breast cancer, leaving a job I loved and figuring out how to keep life as normal for my family as possible.

Wow, who wouldn’t want a chest that looked like the images I saw on the screen. It was a no-brainer, or so I thought.

In fairness to the process, my general surgeon did have me watch a 45-minute video where a cast of mastectomy survivors paraded across the screen, their stories meant to sound comforting and similar to mine, and designed to connect with me, “woman to woman.”  Sitting there watching that video I remember feeling terrified and strangely connected to this cast of characters on the screen for whom were my only source of comparison. 

All of them had chosen reconstruction, but one.   The one who hadn’t reconstructed seemed dowdy, dated, and older than the other, more stylish women, all of whom were proudly wearing clothing that displayed their new chests to their fullest advantage.  They looked tasteful, refined, just like beautiful happy women should look.

I wanted to be them.   Take that Breast Cancer!

Watching the video, I do remember a fleeting thought, “Why is this video so one sided, with women being filmed in full make-up, professional dress and the camera lens filtered to show each woman in all of their gossamer beauty?”  

“Why does it sound like a walk in the park to get a new chest?” 

But overpowering those thoughts, was this imaginary cast of characters I had created in my dreams who would call me a fool for passing up such a wonderful opportunity to have life return to normal for me. 

My new chest might be fake, but hey, it was a chest after all and from that standpoint, everything seemed logical, rational and straightforward as to how to proceed.   I had experienced professionals lined up who had done these reconstruction procedures hundreds, if not a thousand times, and they knew what they were doing.

But here’s the thing.   In my vulnerable state, I DIDN’T HAVE A CLUE WHAT I WAS DOING!  

Yes, I had selected a terrific, outstanding plastic surgeon. He is the best! But I was not basing my decision on my candid conversations with him.

Ladies, note to self: If you don’t ask the questions of your surgeon, you can’t expect them to read your mind.

Instead, I was basing important decisions about my body on a half hour video, sliced and diced to promote reconstruction in a positive light.  I was basing important decisions about my body on page after page of Plastic Surgeon ads, all targeting vulnerable women like “me”.   

I had zero conversations with real bi-lateral mastectomy survivors who chose not to have reconstruction, although I met many after I had already gone through with it.   I’m sure if I had asked my plastic surgeon to connect me, he would have, but I didn’t. So I didn’t really know or understand what questions to ask. I was dazzled by the images I had seen on the screen.

Better than Before…BYE BYE BREAST CANCER! VA VA VOOM ANNE!

I didn’t know enough to ask myself why it suddenly mattered what the stranger on the street thought about my chest? I didn’t know enough to ask what it would be like to have a reconstructed chest that while normal to the outside world, on the inside, felt null and void and strangely foreign? 

I didn’t know enough to understand that after reconstruction my chest region would no longer feel warm and natural, but cold, sterile, as if my breasts spent all day encased in a freezer.    I didn’t know enough to understand that my muscles would no longer work the same way with the implant under the chest muscle and that my range of motion would forever feel like I was a marionette on a string.   I didn’t know enough to understand that I would no longer be able to sleep on my stomach and that sleeping on my side would cause pain and discomfort as the implants became increasingly hard and inflexible.   I didn’t know enough to understand that implants move and shift when you are active as I am, and that I would not be able to do a lot of the things I love, without having to pause mid-motion to acknowledge the limitations the implants created.   I didn’t know enough to understand that I would be in pain every single day and every single night, in my hips, my upper chest, under my arm because my body didn’t like silicone.    I didn’t know enough to understand I would feel foggy, almost dysfunctional, day in and day out because I was not ever getting a good night sleep.  I didn’t know enough to explant sooner, after the first implant shifted into my left arm pit and was replaced, and again, after the right painfully contracted due to radiation, and then contracted again almost immediately after it was replaced for the second time.   

I didn’t know enough to understand that despite outward appearances, I would be a physical and emotional wreck for going on three years, as day in and day out, what was going on with my chest dominated my daily landscape. 

I didn’t know enough to understand that my faith was being tested, as while God was busy answering blessing after blessing and I certainly was blogging about all of them, the one thing that didn’t seem to change was that privately I was forever dealing with my chest. 

“God, you have been with me every step of the way…I know it, but what is going on here?” 

“Is it so wrong to want to wake up in the morning and just be me and not have to deal with my stupid chest day in and day out?”   I felt a deep loss, as if God didn’t understand and guilt because I knew I had been blessed time and time again and I should just shut up and deal with my lot in life.

There are so many people who are worse off than me and my stupid fake boobs, right?

I began to withdraw from my family, friends, life in general, and sort of hermited myself away in the house all day.  I tried my best to engage at church and with my book club and some close friends and of course, my husband and kids, but more often than not, I felt as if my writing was my only friend.   And then at some point, as I said, even that stopped being important to me.    I was in pain.  Literally yes, but more figuratively, because I had done everything right and yet, my life wasn’t right.  I felt empty.

You see, I did what most women of means do when confronted with breast cancer.  I found one of the best plastic surgeons in the business, a breast cancer reconstruction specialist who would work in tandem with my general surgeon and out would come the cancer tissue and in would go tissue expanders that would prepare my chest for new breasts.   I would wake up from the anesthetic still with some form of a chest and yes, it would be painful for a moment, maybe a long moment, but it would be worth the pain in a few months, when my new chest was healed and new implants in place,   and life would go right back to where it was June 2016. 

Only, it didn’t go back.  Not at all and I was really feeling pretty lost.  Like I had made this terrible decision to do this reconstruction thing and it hadn’t worked out so great, but so many people looked up to me as a role model and I had set myself up for that with my positivity blog.  I wanted to be a great example not only them, but my mom was now battling breast cancer for a second time.  Although she would never ask it of me, I wanted to be strong for her as well.  A pillar of strength.  A beacon of hope.   But I was miserable.  

Although, I couldn’t quite articulate what was happening to me, I felt everything: the physical pain, the emotional scars, the loss of interest in my faith, all seemed somehow tied to the problems with my chest. I had some friends who had had reconstruction and everything was fine with them. What was it about me that made me different from them?

Now, I believe God works his blessings in our lives in ways we never expect.

Mine came in the form of getting lymphedema after my April implant replacement surgery and a recall notice from Allergen about my implants possible link to lymphoma.      

Huh?   Lymphedema and recalled implants a blessing…WHAT?

Yep, because when I got lymphedema, God put in my path three amazing women, lymphedema occupational and physical therapists, who turned out to be my angels.     I was to meet with them twice a week.

My very first session, the first therapist took a look at my chest and said, “Hmmm…yeah I can see the fluid build-up, but seriously I think you have contracture again and that’s probably why your chest hurts and implants sometimes don’t work for certain women despite their surgeons best efforts.”

Another therapist said, “Anne, I have had clients who have had all sorts of pain, tissue dysfunction and emotional issues from breast implants and removing them did the trick.”

My third therapist said, “Radiated tissue causes contracture. It’s a given. It’s really difficult to get implants to react normally once you’ve had radiation.”

I do recall my plastic surgeon telling me how much he hates a radiated chest…what a battle it will be and oh, yeah, I do recall him telling me this would take a long time to get right.   

“If only you hadn’t had radiation, things might not be so difficult for you…chest radiation always, always affects implant success.”

As I said, I have tremendous respect for my plastic surgeon.  He has given it his best shot to help me every single time. But I had no control over the fact that no one raised a red flag and I mean a huge red flag when I chose to have reconstruction as a part of the cancer tumor removal process before it was known whether or not I would need radiation. Not my general surgeon, not my plastic surgeon, not my radiation oncologist, my general oncologist, my primary care physician, the video I had watched about reconstruction, or anywhere obvious on-line.  

No one said, “Anne, you seriously need to think about this and I mean THINK ABOUT IT because the risk of implant failure with radiation is almost certain!”

I mean, I’m reasonably intelligent and I think a simple, “You know Anne, if the surgeon doesn’t get all the cancer (as was my case with an unclear margin), you will need radiation and that will definitely impact the success of an implant.”  I’d like to think I would have said, “Well o.k. then, lets get this cancer out first and see what happens.” In fact, I know damn well that’s what I would have said.

So why wasn’t it said and said over and over and over again?

I came to understand some of the reasons why in conversations during the twelve sessions, 360 minutes in total, I had with my lymphedema therapists as they massaged and prodded and poked at my rock hard chest to get the fluid to move. Let me be clear, they were extremely professional at all times. They never crossed the line with information out of their realm or scope, however, during my time with them I felt like for the first time someone understood what I was going through. They understood that I didn’t like how I was feeling, that it wasn’t o.k. for this feeling not myself to be my new normal and in turn I came to understand a lot about my body and that other women they treated had similar issues, that I was not alone in my suffering.

I came to understand that the push to attach foreign bodies to a woman’s chest has virtually zero to do with her making a quick recovery from breast cancer and everything to do with the fact that breasts sell. Breasts sell magazines, television shows, movies, clothing, and that means advertising dollars up the wazoo. There is a reason why there is not a lot of information out there on choosing to remain flat. Who’s going to push the media algorithm to not reconstruct if the money is in the reconstruction?

It’s like going flat is a secret society and we’ve been conditioned to say it under our breath or apologize if that’s our choice, as if it’s a bad thing.

I came to understand that my body, for whatever reason, just didn’t like being invaded by blobs of silicone and that it was a lot more common than the medical community wants us to know.  In fact, 25 percent of women who get breast implants have them removed and 46 percent undergo a revision operation within the first 3 years , another 6 percent have them removed due a variety of issues ranging from contracture to chronic pain and all sorts of other physical and emotional issues.   Ding, ding, ding!!!

I came to understand that the choices women are pushed towards when facing a mastectomy, are not focused on quickly enabling her to live her life cancer free, but about making sure that a woman is restored to her previous “expected” appearance aka, with boobs.    The video I watched prior to making my reconstruction decision was proof of that.   The literally thousands of plastic surgeons and images of reconstruction on the internet is also proof.  But trust me, there are loads of women, more than you know, who quietly live their lives without a chest and you know what, life goes on. They are beautiful, they are worthy and they are just as sexy.

I came to understand that literally thousands, if not tens of thousands, of women who have undergone reconstruction after a mastectomy are suffering in silence with a whole host of symptoms like constant nerve pain, fatigue, depression and an overall lack of well being.    That there is an actual name for it called, “ Breast Implant Illness” and while it is now considered a real thing as there has been an FDA identified link between implants and a rare form of lymphoma, leading to an implant recall, the actually spectrum of Breast Implant Illness covered every symptom I had been experiencing since June 2016.   Every symptom!   My gut instinct was correct!

I came to understand that the lymphedema that I had experienced was most likely, in their expert opinion, caused by the implant contracture blocking the fluid from moving freely in my body and I had a terrific chance, if the implant was removed, of putting lymphedema, at least for the most part, in the rear view mirror.

I seriously can’t thank my lymphedema team enough for opening my eyes to the realities of what I was putting my body through with implants. They helped me in so many ways and I will always regard them as my angels. But, they never said my immune system was rejecting the implants outright, they were all too professional for that, my blood work was fine, I was the bouncing ball remember? I was the role model, the poster child for surgical recovery.

Still, I needed more substantial proof that the implants were the source of my problems. I prayed and God answered my prayer almost immediately and it came in the form of a letter.

My implants were recalled. EVERY SINGLE ONE. The recall letter from Allergen, the manufacturer of the textured implants I had,  listed over 40 recalled implants, plus a bonus surprise, the tissue expanders I had had initially were also on the recall  list, along with 13 others tissue expanders.   France and Canada had pulled these products off the market in 2015-16, prior to my first surgery and yet, here I was a United States guinea pig for a product that had already been deemed a known cancer-causing harborer by two world superpowers, not once, not twice, but three times, not including the expanders which were in my body a whole three months.

“Anne, you shouldn’t worry, you only have a 1 in 30,000 chance of getting this rare form of lymphoma from the implants!”

Um, sorry, rare or not, I’d prefer not to get cancer again thank you very much!   

So, I had the information I needed. Some was speculative, some proof positive and I had explant surgery last week.  

Prior to this decision, I met with my plastic surgeon.  He obviously was a bit disappointed.  I get that, he’s earned his medical stripes diligently trying to salvage my chest and like I said, he’s the consumate professional.    He offered me some options like implant exchange or on the radiated side, having a muscle removed from my back.  The latimus dorsi muscle, the one that I use to swim, to paddle board, to push and pull and lift…but hey, who needs a latimus dorsi muscle when it can be a foundation for yet another implant, all be it smaller, but still another implant.  But it would be soft.  No more contracture.

I didn’t have to think twice.  I said, “I know you have tried to help me, and I value that more than you will ever know, but I want them out!”

So here I am 6 days into explant recovery.  It hurts like hell and it doesn’t look pretty at the moment.  I have drain lines in, so sleeping is a bit of a challenge, but I saw the plastic surgeon today and he’s very pleased with the healing and said the drains can come out in about 10 days. All in all good news and I know it wasn’t my imagination that he seemed to be as relieved as I am to be moving on from this reconstruction nightmare.

I didn’t share with him that I’ve already been blessed by so many miracles in just six days.

I have feeling, instead of numbness, in my chest region for the first time in three years. 

My skin on my chest feels warm to the touch, instead of cold and icy.

I had to adjust the temperature on the shower to cooler as I could actually feel the hotness of the water on my chest region.

My arm range of motion, while a bit limited due to the stiches and soreness, is greater than it was pre-surgery.  I don’t feel like a marionette. 

The lymphedema in my chest is limited and doesn’t appear to be much of an issue now.

The crippling pain in my hip, legs, back is gone.   Completely gone!

I am able to move from the floor, to the bed, using my legs and arms, on the first try, without assistance.

While I am tired, the brain fog, the depression, the lack of motivation, the complete lack of energy is gone.   

I am back to believing in blessings and miracles and God’s amazing power to comfort and heal.

I am happy.

I am joyful.

I am me again. 

This is my story and my story alone. 

Lots of women have different, more positive reconstruction experiences, and I am truly grateful that they are not experiencing the issues that I have faced. I know some of these women and so my candor here is in no way designed to diminish their happiness. They have survived breast cancer and their reconstruction has been successful for them. Praise God!

However, my journey has been different and I felt it important to share with all of you who have been on this positivity journey with me, my struggles and my solutions, especially women in breast cancer recovery, those who have chosen reconstruction and those who haven’t and all who care for those with breast cancer.

Do not be afraid to make a bold choice and put “you” first when it comes to your health on all fronts.   Ask the questions, demand the answers and if it doesn’t feel right, then go with your gut.

Instinct sometimes is all we have to go on when it comes to our health issues, especially when it comes to our breasts, cancer and reconstruction and it is important that a women trusts hers.

You have survived cancer, you are survivor and you will, as I have, survive this too.

I am here to support you.  To pray for you and lift you up. 

PositivelyAnne