Mastering the art of “resting”

Heading into my third week of recovery after my bi-lateral explant surgery, I have discovered the truth about myself:

I am an absolute utter and complete failure at the art of forced “resting”.

Now it’s silly because after sixteen prior surgeries, I understand the importance of physical rest in surgical recovery.

Rest equals healing. Healing equals getting back to life sooner than later.

But rest, true rest, is so much more than just closing my eyes.   It’s about shutting off that internal motor that powers my brain around the clock, creating to-do list after to-do list, until it runs out of gas.

In my recovery, I have support and plenty of it.  But I find myself day after day, night after night, pushing my mind at a fever pace to problem solve, to plan, to create, to design, to negotiate. As the lists in my head grow longer and longer, my stress level mounts.

Does this sound familiar to any of you?

Now you might be thinking I’m talking about not wanting to let go of control of my routine.  I’m am not. 

I truly have no problem letting others take control while I recover from my latest surgery and I am grateful that I have people I can count on to do just that. It is a luxury I know not everyone is blessed with and I do not take it for granted.

But, somewhere in my wiring, I’m not good at shutting off the planning department in my mind: the forward thinking minions racing around in my brain looking ahead.

In other words, I never fully allow myself to live in the moment when I’m just plain ol’ me, with no agenda, nothing to do but rest, physically and mentally.

It’s ridiculous isn’t it?  I mean I know people understand I’m out of commission for a bit and they are doing their very best to help me, expertly in fact.

So why don’t I just let them do their thing and leave the planning department shuttered in my mind while I heal?

Why does my mind race all the time, forever spinning through a growing agenda of imaginary problems and issues and things I should tackle? Why is it so hard for me to accept that shutting down and powering off for a bit isn’t a negative for me?

The other day my husband came home from work and asked if I had rested.  I said, “Yes!  I had a wonderful two hour nap with the cats.” 

I then proceeded to tell him that before that nap with my fur babies, I had scheduled window cleaners, household painters, tree trimmers, sorted through some paperwork my occupational therapist needed, had a friend over, texted with my parents and my brother and one of my kids and worked on my blog. 

He looked at me like I was …Well, let’s just leave it that he looked at me funny, shook his head and began to make dinner for us and a martini for himself! I honestly don’t blame him. What’s wrong with me?

Just as an aside, my husband is rock solid when it comes to housework and cooking and any honey-do projects.  We are a team and when one of the team is down, the other team member steps up to the plate without asking. It’s worked for thirty-one years and so why I felt the need to push through an agenda of projects that would make the Property Brothers on HGTV sweat and my husband need a martini, I have no idea.

Later that evening, as my husband and I finished the absolutely amazing meal he had prepared, suddenly the weight of all I had done during the day began to feel like an anvil on my shoulders. 

Yes, I had physically rested, had napped. But mentally, I hadn’t rested at all.

Uncertainty about whether or not I was going to be able to follow through on all I had scheduled, all I had planned, all of my forward thinking, was like an anchor around my neck, slowly pulling me into the abyss. 

I began to cry. I cried as if a dam were breaking and it hit me that to fully recover from this surgery,  I had to let go of this idea in my head that just because a part of me is on mandated rest, I needed to activate, full throttle, all of my other abilities, specifically my mind,  to compensate.  

No one is asking this of me, so why am I asking this of myself?

My wonderful husband pulled me close and told me not to worry. 

“Everything is going to be o.k.!”

He also reminded me that I’ve been through a lot in the past three years and that it was perfectly fine for me to check out of the “agenda in my mind” while I recover.

Life would go on whether we painted the interior of the house, had dirty windows or an overgrown tree.  He’s right.

I need to figure out a better way to push the pause button in my mind completely.  I need to give myself the gift of healing not only physically, but mentally, emotionally and in all ways that matter. 

Well, I’d like to say that I cancelled all of the honey-do projects, but I didn’t.  The window cleaners have come and gone. The tree trimmer is scheduled to show up on Friday and as I write this, I’ve been sealed in my office by plastic and painter’s tape. The painters assured me they would let me out in five to seven minutes after they get the ceiling outside of my office painted.

It’s now been 45 minutes! 

Damn, I really do need to pull the plug in my mind, power off and embrace my faulty wiring, let life go on for a bit without my input.   Then maybe, I’ll be able to say truthfully that I’ve finally mastered the art of “resting!”

“Hey Painters, it’s getting hot in here!” 

“Guys…c’mon guys…anyone there???…Hello???”

PositivelyAnne

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No More Doubts!

Heading into my second week, post bi-lateral breast implant “explant” surgery, I’ve discovered that recovery, whatever we are recovering from, in my case recovering from yet another major surgery associated with my breast cancer journey, takes an enormous amount of faith in an outcome that is at the mercy of a lot of things beyond our individual control.

For someone like me, who likes their life rather tidy and orderly, it is a difficult thing to have to ride a roller coaster of pain, emotions, and uncertainty in yet another surgical recovery, and it becomes even more complicated when “doubt” creeps in to cast a shadow on what has, in essence, been a text book recovery for me so far.  

I want to talk about my “doubt” because it has little do with recovering from an actual surgical procedure.   It’s more complex than that. 

My “doubt” has never stemmed from a decision to have a particular surgery, no matter the complications.  Nor has my “doubt” ever been due to a lack of trust in my surgical team’s competence.  I have been blessed with the best and brightest the medical community has to offer in every single instance.  Lastly, and most importantly, my “doubt” has never been about a lack of faith that God will help me or that He will put others in my life to help me.  My eyes have been opened to the miracle of God’s grace time and time again in each of my surgical journeys and in all aspects of my life, so I don’t for a moment doubt God’s existence in my life.

But I’ve noticed a pattern of “doubt” that manifests within me during each surgical recovery, that instead of just embracing these things as my truth, I spend an awful lot of time questioning God as to whether or not I am worthy of continuing to being blessed with yet another chance at this crazy life of mine.

Despite my faith in God, I’ve discovered that my “doubt” and “worthiness” over receipt of God’s amazing grace, time and time again, weighs on me because I am very aware that there are so many people out there suffering all sorts of ailments who have not been equally blessed.   

And the fact remains, that regardless of being a good person, many people do not have the opportunities that I have had, with access to the best in healthcare, a loving and supportive caregiver in my husband, the best support team in my kids, friends, church and extended family, and all sorts of strangers, who, along the way, have blessed me over and over again and helped me quickly get back on my feet.  

So, my “doubt” centers a lot around, “Why me?”   What is so special about me that I should be able to test the surgical hands of fate time and time again and recover in a way that affords me the opportunity to get back to life rather quickly and share that story with others, when so many others are not able to do so?

In the quiet of the night, I lie awake and ponder this question and maybe because this was surgery number seventeen, I’m pondering it now a bit more.   I mean it’s quite reasonable when you are coming close to running out of fingers and toes to count your surgeries on, that questioning God about how much longer this gravy train is going to last is a rather human thing to do, right?

Then again, I wonder if in questioning God, I seem ungrateful?

I am very grateful.  Grateful for each new day and I don’t take for granted anything about being able to wake up and go to sleep and wake up again.   There is a satisfaction and peace that comes with knowing that’s possible for me and yet, the “doubt” comes.  

Although I am grateful, I feel “unworthy” of all that has been afforded me and my mind races trying to pinpoint the exact moment when God said,

“Here is Anne, someone worthy of saving, over and over and over again.”  

I have been blessed to live a privileged life and I know it.  But I am also keenly aware that I’ve worked hard for it and continue to work hard for it.  It hasn’t always been easy and trust me, after seventeen surgeries, I don’t think anyone will have a problem with me saying that I’ve grown weary of hospital gowns and handsome anesthesiologists and even medical miracles. 

I’m kind of over the excitement of the operating room, grateful as I am for it.

As I was pondering what I would say in my blog, a thought came to me last night that maybe I’m looking at this whole thing the wrong way.   I mean a lot of times when life seems complex, God points us to the fact that things really aren’t as complicated as we humans tend to make it, so, maybe that’s the case in this instance as well?

Maybe, my health journey and my role in sharing my journey, including discovering my possible, is not rooted in the details of my own personal success stories? 

Maybe it has nothing to do with my start or my finish.  My beginning, my middle, my end.   

Could it be that it is as simple as one human planting positive seeds of faith by openly sharing their story of being a broken, vulnerable human with other broken, vulnerable human beings?

Is it plausible that God is using my journey, including my “doubts”, my wrong turns, my fears of “unworthiness” and lack of value and the sharing of the crosses that I bear, to somehow allow others to see more clearly through their own doubts, and fears, giving them the courage to share their own stories of hope in the face of despair?

“Here is Anne, someone I am using on earth to tell her story so that others may find happiness and joy in their own journey of discovery.”

I had a text from a friend this past week that, and the more I think about it, confirmed this theory.   She had shared my blog from last week with a family member who was struggling with her own breast implant reconstruction and my friend shared the response text from the family member with me.  I will leave the contents of it private except to say that the text was not about the further sharing of details of this person’s health issues, or exchanging medical advice, or about wanting any sort of resolution for this individual.  Instead, the text simply shared that my words brought this person comfort.   That my words would be shared by this person with other individuals they knew when the time was right and the circle of comfort would continue because I had chosen to share my journey in a public way.

That’s powerful and humbling and huge. 

 No wonder I feel a bit unworthy of it all!

But there it is.   This must be how God is using me.   Using my situation, every surgery, every stumble in my recovery, every scary monster that I have faced in the past few years to encourage me to help others to put one foot in front of the other and fight. 

I really do need to accept this challenge from God and move on from my “doubts.”

An image of human hands holding human hands comes to mind.  Each individual hand cold, full of doubts, and fears and feelings of unworthiness.  But join these hands together and suddenly where once flesh was cold, there is now warmth.   The warmth of human kindness.  God’s gift to us.

A circle of comfort!

I am excited to share this warmth with my readers, with anyone in need.  I am excited that though I could have done without seventeen surgeries, if this is what it takes to help me find my path, my possible, my voice in the world, and in doing so, I help others,  then God has served me well. 

I can only hope I remain a worthy, humble servant.  No more doubts! 

Won’t you join me and share your story too?!!!

PositivelyAnne

Bringing Back Me

Once I was lost…but now I’m found…was blind, but now I see….
-Amazing Grace

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

Moving your life story from “I Can’t” to “I Can Do It!”

I sat in the car for a few moments before starting the engine, gathering my thoughts. I could literally feel my mind racing, like it actually had a heart beat and I started to laugh. I laughed and laughed. I must have looked like a loon to anyone driving by.

You see I was laughing at the fact that despite my intentional focus on positivity, it remains my truth that there are going to be things in my life that are beyond my control to change. Things I’m not necessarily meant to understand fully because, well, it’s pretty simple, I’m not meant to.

Lymphedema is one of those things.

Lymphedema has been on my radar since I underwent a bilateral mastectomy for breast cancer and was informed that there was a risk, a life-long risk, of my lymphatic system becoming painfully blocked in my arm, breast and/or hand due to the removal of lymph nodes from my under arm to test for rogue cancer cells.  When and if, that happened, I would face the possibility of an unknown level of swelling, pain and risk of infection for the rest of my life. Whoopee! 😦

Last week my hubby and I were looking forward to packing our bags for a much needed New England getaway when I began to notice that my right breast hurt, was red and was very swollen. I knew exactly what it was. Lymphedema had arrived in my life.

I’d like to say I took immediate action, but I didn’t. I waited.

You see this trip to New England was a celebration of the completion of three years of surgeries, a delayed 30th anniversary trip and birthday celebrations for my hubby and I all rolled into one. Nothing, nothing was going to get in the way of our special time together, least of all lymphedema.

The God I love could not be that cruel.

But, as I said there are things that are beyond my control. Things I am not meant to fully understand and I knew deep down that God was in no way responsible for this latest health issue, so I set aside my pride, my need to control things and made the phone call to my surgeon.

He took one look at me and I just knew. No words needed to be exchanged.

After a moment of awkward silence I said, “Um, so my husband and I have a plane to catch and a romantic adventure awaiting, so I’ll deal with this little lymphedema issue when I get back, o.k.?”

“Sorry, no flying…not until you get fitted for a compression sleeve and see a physical therapist who specializes in lymphatic drainage. Oh, and by the way, it looks like you have an infection in the lymphatic fluid surrounding your new implant, thus the reason you are not feeling well, so we need to put you on strong antibiotics, remind me what you are allergic to again?”

“Allergic, me? How well do you know the good folks at the Center for Disease Control, cause they pretty much have me on speed dial!”

So, instead of cycling around Long Island with my favorite guy; or cheering on the Red Sox at Fenway while drinking one too many beers; or learning how to make cheese in Vermont, I sat there in the parking lot of my doctors office laughing like a loon and thinking how in the hell was I going to make this wonderful new game plan sound as fun and exciting to my husband as the vacation we had planned.

But I needn’t have worried.

Oh, I’m not going to lie to you.  A few tears were shed, a few choice curse words, some I’m ashamed to say aimed directly at God and my husband was sad. I was sad. Everyone in my family was sad.

Yet in this moment of sadness, I’m choosing to see this whole lymphedema thing through a positive lens. This set back is no different than every other hiccup I have been through health wise and I know it to be true that blessings are often not what we have planned, but what is revealed to us in our journey.

I have discovered that God has provided me with an amazing opportunity to define my life not by all the things I can’t do, all the things, for example, that lymphedema will temporarily impact, like travel plans. Instead my life can be powered into infinity by the “I Can Do It!” moments.

And there is so much comfort and joy in that revelation.

Four simple words…

“I Can Do It!” 

Words that are considered high frequency use words and are a part of the first 100 words we learn as young children.  Words that young children are quick to embrace and use often, without prompting and adults quickly forget.   

“I can do it myself mommy!”  “Let me try that daddy, I can do it!”  

You see the older we get, we lose sight of the value and power those words “I Can Do It!” can have in propelling us forward through all the negative trials we face in our adult lives because we are constantly taken aback that adult hood doesn’t include morphing into a super-hero capable of keeping the “I Can’t” in our lives at bay.

Thus the reason I sat in my car, after my doctors appointment, laughing at the irony of being a positivity blogger and yet, this one stupid thing, this lymphedema thing, I couldn’t fix even with all of my positivity efforts.

I know it’s wrong to beat myself up, but I guess the older we get, the more seasoned we become at choosing the “I Can’t!” in our lives first, until it is on autopilot.   I’m a grown-up damn it, this all should be so simple!

Maybe it’s not all our fault tho.

You only have to turn on the television, radio, your computer and promoting “I Can’t!” is nothing short of a global phenomenon, with billions and billions of dollars changing hands each day at the expense of our vulnerabilites.

Tell us whats wrong with us enough and we begin to believe it and we will pay to hear it over and over and over again.

Seriously, have you ever stopped to think just flipping through the cable channels how much messaging is geared to the “I Can’t” in us, then the “I Can?” Multiply that exponentially over the course of a life time and well, that’s a lot of “I Can’t!” At some point, we stop trying to think positively and focus on all the bad because it’s what we are conditioned to believe is of value. We promote it in our selves, we promote it in each other.

The irony is we are all banging the same drum.  “I can’t!” “You can’t” “We can’t” and the song is so stale and old and tired we’ve become numb to it.

I get it.  I’m ashamed to say that I’ve embraced the negative more times in my fifty six years than I can count. Honestly, the past three years it has been so tempting to just bathe in all of that negative vibe.   I’m tired, I’m broken and done with all of the chaos my health issues have caused me and damn it, I wanted to go to New England with my husband, is that too much to ask?

There seems to be an unspoken kinship in us grown-ups, wrapping ourselves in that blanket of pain and sorrow and all that is lost?   We take one for the team of “I Can’t!” time and time again because frankly it’s pretty easy to explain all that we can’t do and so damn hard to explain our possible, especially, if we haven’t a freakin clue what it all means.

But I’m discovering that if I/we wallow in our own pool of what is wrong with us, we totally miss out on the joys of what we are truly capable of.

We all have within us the ability to move the needle from “I Can’t!” to “I Can Do It!” and all we need to do is stop complicating it and remember the child in us.

When my children were small and the years I spent as an early childhood educator, I discovered that, “I Can Do It!” flowed freely from the lips of young children, but not so much from adults.  

You see the difference between young children and adults when it comes to the eight simple letters of “I-C-A-N-D-O-I-T” is that young children don’t automatically reach for the “I Can’t” when things get tough.  They haven’t been tainted by advertisers and media and the collective security blanket of negative images and thinking.

When they face a physical or mental challenge, you will hear words like, “I want to try again”, “I would like another turn to try”, “I want another chance.”  All implying their possible.  

When they don’t feel well, once recovered, they have little recollection that they were ever sick and instead quickly get back to all they can do.

Thinking back to when I was a kid, I remember I got a bad case of chicken pox and learned to tie my shoes and ride a bike in the backyard while I was recovering. What the heck happened to that drive and motivation of that little girl? What happened to that kid, who despite being covered in itchy chicken pox, saw only her possible?

When did what I am incapable of become of greater value in my life than what I am capable of?

It’s interesting that failure is an every day thing in the life of a young child and yet, it just isn’t innate in them to automatically go to the dark side.

In fact, it is often during those really difficult moments when their “I Can’t!” seems to be the only possible outcome, that young children rally around each other, lifting each other up.  

“I can do it” becomes “We can do it” and it’s a marvel to witness.

You see, what we adults interpret as loss: of our health, our person, our God given right to control our destiny in every aspect; young children see as a forever opportunity to GET IT RIGHT! Whether that is by themselves or in a group, there is no negative drum beat, only:

“I can do it!”   “You can do!”  “We can do it!”   

Sounds like a pretty wonderful way to live, right?

Imagine a world where adults are no longer fearful of the inevitable obstacles, forks in the road, and jaw dropping cliff dives of life for which we have no control.

“I CAN DO IT!”

Imagine a world where adults are no longer vulnerable to the advertisers and media and the “I Can’t” of their reality and instead dream, imagine, cultivate all of their possible in themselves and in each other.

“I CAN DO IT!”

Imagine a world where we no longer table our child like wonder and the blanket we wrap around ourselves is warm with love, hope and all of the possibilities of our together.

“I CAN DO IT!”

We don’t have to wait. We have the tools in each of us to make it so and we only have to look to our childhood for a reminder.

I am going to work hard in the coming months to make that my reality. I know with the help of God, my family and friends, medical team and yes, even you, my fellow positivity seekers, that I do not have to give lymphedema any more of an audience in my life story then it needs to be. 

I truly am looking forward to discovering all of the “I Can Do It’s!” that have yet to be revealed in my life and share those wonderful stories with you.

I am excited.  I am hopeful.  I am blessed.

And I’m going to New England with my favorite guy as soon as I’m cleared to do so. My bags are still packed!

PositivelyAnne

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Faith is not a label, it lives and breathes

For here was “faith”, not as a label, not even as a building as magnificent as Notre Dame…

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It was Palm Sunday 2004, and my husband and I and our three children were on a tour of Paris, France. Our tour guide asked us if we would like to see the Dimanche des Rameaux” (Sunday of the Branches”) at the Cathedral de Notre Dame, a Holy week celebration of Jesus arrival in Jerusalem.  Our kids, being huge Quasimodo fans, thanks to the 1996 Disney version of “The Hunchback of Notre Dame”, were thrilled.  My husband and I, while extremely excited, were still a bit unsure about putting our family in the middle of such a large gathering, only because the pain of 9/11 was still very fresh and we had already experienced a massive French military presence near our hotel and along the  Champs-Elysees due to the state visit between Queen Elizabeth and French President Jacques Chirac.   But children have a way of putting things in perspective and my little boys request, “I want to see QUAAAASIIMOOOO” sealed the deal.

Safety concerns aside, I silently hoped and prayed that some elfin creature would materialize from the bell tower of Notre Dame singing “Out There” or we were going to have some very disappointed children.   I wondered if Jesus would help me out here.

Palm Sunday itself had started off in typical April in Paris fashion: gray and drizzly!  But as our driver approached Notre Dame, the clouds broke to reveal a powder blue sky. The sun’s rays bouncing off the rose windows in the Cathedral tower reflected a kaleidoscope of colors onto the white robes of the clergy gathered on the steps below. 

Our driver, could not find a place to park, dashing any hopes of us joining in palm procession, but he quickly zipped into a red curbed driveway and rolled down the windows.

“Prenez vite vos photos!”  (Quick, take your pictures!). 

I didn’t think twice and just started snapping pictures.  Through my camera lens, I could see thousands of people, old and young, and somewhere in-between, locked arm in arm, standing in the shadow of this towering testament to gothic architecture and human survival.  Palm branches were waving everywhere.  I mean everywhere.  With my ears, I could hear a cacophony of voices: some angelic sopranos, some altos, tenors and bass, some off-key, literally hundreds of languages singing what I later learned was a hymn called, “The Palm.”   There were people who were not singing on the periphery of the crowds, but they were no less engaged.  Most of them were smiling, their teeth white against a myriad of skin tones, their eyes raised to the heavens in joy, to admire the bell towers or possibly the spire atop, or maybe in hope that the wafting clouds might part further to reveal the Christ they had come to praise.   Some were taking pictures like me. Others were silently holding hands with a loved one, or cuddling a small child.

I looked at my children, at my husband and gone were any thoughts of spying a Disney cartoon character.   For, here was “faith”, not as a label, not even as a building as magnificent as Notre Dame, not as a theological doctrine or a set of rules that I struggled to follow, but rather “faith” in its’ purest form:

Raw, human interaction.  Diversity in all its’ splendor.  A celebration of the human spirit, of all we can be together.   No barriers, no boundaries.

My three-year old son who was hanging out the window, turned to look at me, his tiny hands clapping, “Happy mommy, it’s happy.”    

Quasimodo was forgotten.   “Faith” had taken root instead!

I wanted so badly to get out of the car and walk with my family, arm in arm, towards those crowds outside Notre Dame and all of that “faith, but alas, our driver said we needed to move on and off we went in search of Montmartre and Sacre-Couer and all the other wonders of Paris.

But after we returned to the states, I thought about that moment at Notre Dame.  The cynic in me argued that I was romanticizing things.   Being a Christian and a regular church attendee, it’s natural that I would be excited to see such a diverse group of religious faithful joyously celebrating one of the most sacred aspects of Holy Week, at one of the most famous churches in the world.  

But deep in my heart I knew I had been blessed by what I had seen in a different way.  

And I began to wonder why I had couldn’t live out my life with a “faith” that simple and pure.  No labels, no barriers, no ridiculous expectations or judgements, just pure happiness.

I knew how to do it.  In fact, I think we all know how to do it.   

Terrorist attacks, natural disasters, the death of a child…almost any tragedy, we move together without thinking as one “faith”.   Oh, not the “faith” of a specific religion, but a “faith” that lives and breathes in each other, in humanity and in our very human desire to be the light in the face of darkness.  

Yesterday, as the world watched Notre Dame burn, I once again saw the people gather, this time in the shadow of the flames engulfing their beloved treasure  Their tear stained faces,  reflecting the sorrow of what was lost, but in their eyes was a determination and hope that immediately took me back to that Palm Sunday fifteen years ago.   

It mattered not where they came from.  It mattered not their theology or lack thereof.  It mattered not their income, their gender, their skin color, or any other label we humans assign other humans.   

What mattered were the images of strangers, standing arm in arm, voices raised in song, defiant of the flames, reminding us that even in the face of darkness, happiness is just around the corner.      

I need to make it a priority to not lose “faith” in my fellow human beings.  There is much good there…SO MUCH GOOD!    

Hope is alive. Positivity is stronger than Negativity.  Let it in.  Let it flow.   

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That’s what Jesus would want us to do.   That’s what we should do! 

Happy Easter,

PositivelyAnne

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