Breast cancer, life lessons, Women

DECONSTRUCTION OF RECONSTRUCTION

I look in the mirror and I am unsure of the image staring back at me. It has happened; my body is shifting in a way that despite the workouts there is a reorganization of sorts happening. I did not see this coming when I was in the decision phase of replacement parts for the breast tissue that would be removed. I say breast tissue because I have learned that this is really what a mastectomy is. It is a scooping out of all of the stuff that makes your breasts stare back at you and in need of a bra. If it were anything other than this, the skin would not be there and the breast surgeon keeps this so the plastic surgeon has the shell to work their magic on. This is why saying, take them off is incorrect. Scoop them out is more like it. But that sounds disgusting compared to take them off, so take them off seems to be the go to phrase.

This is what they did with me. Worked their magic so that when I woke up from my surgery two years ago, I would get the joy of having something similar to what was there before. It seemed like a great idea at the time. So much so that I never considered the alternatives as I wrote endlessly during that time how much I liked my breasts. And I did. And I do.

Sort of.

The reason, (that seemed obvious at the time), I chose reconstruction was that I didn’t want nothing. I never even imagined this as a possibility because I just couldn’t see myself with no boobs. I had a definite identity with them; they defined my shape, my femininity, my sexuality, my sensuality. When the doctor was reviewing all of the bells and whistles that make up a successful reconstruction surgery, listening to the details of this was not my priority. This is shocking to me in retrospect, since I am the annoying woman at the grocery store analyzing every label, driving endlessly to all of the specialty stores to buy bio dynamic wine, but I can understand why. At the time there was so much going on in learning how to remove the cancer, that the removal and replacement distinct details of post surgery were almost insignificant.

Getting diagnosed with early stage breast cancer twice in a two year span ensured my mental focus on removal of all things cancer. I didn’t ask the detailed questions about the silicone that would soon be replacing the real live breast tissue or the long term effects of having fat liposuctioned from the lower part of my abdomen so the breasts would have a more natural shape. I didn’t ask why this would even be important down the road and what it would ultimately do to my very flat stomach. Because honestly, life vs keeping my flat stomach was really not in my radar as a priority. Seems silly to even write it, frankly.

Let me preface the remainder of this piece today with the full realization that I am talking cosmetic surgery. I am aware that I am alive, that a simple mammogram saved my life twice and two years later I am a happy chick. I am humbled and am deeply grateful for the experience and the survival. I am not supposed to complain about these weird post observations. I am supposed to be happy I am alive and it feels selfish that I speak out about this. But this is typical of women’s issues. There is this unwritten law to not complain, to not speak up and out, to instead smile and be grateful. This is why this is a struggle to write about the reconstruction experience two years later. I don’t want to complain and sound like I am anything other than thankful for being alive. At the same time, I am starting to see the post surgery for what it really is and the impact that it has on my body.

I hesitate in even writing this because of all of the friends of people who were just diagnosed reading this and thinking immediately, “I have to forward this to my (insert female name here) right now since she is just getting ready to go into her surgery tomorrow and she needs to read this.”

Please don’t forward. This won’t be helpful. It will just create stress and confusion for an already stressed and confused time. Elective cosmetic surgery is already loaded with guilt ridden thoughts. It is saying aloud that I care a lot about how I look to the world and to myself and whether you choose to do reconstruction like I did, or you didn’t (like sometimes I wish I had) the choice is one you get to literally live with. My plastic surgeon doctor said on more than one occasion, “Alayne, remember, this is elective surgery.” This always cracked me up because it wasn’t him sitting opposite of me deciding whether or not he wanted his penis cut off and not replaced or replaced. Easy for him to say.

right after reconstruction hard to believe this was two years ago. holy time travel.

The getting used to part of reconstruction is that weird paragraph left out of the conversations in the intensity of planning a mastectomy. In reflection this part would likely not be helpful at the time, but now seems, in hind site seems like it would have. That is the learning curve of hind site, isn’t it? This is all a fantasy world that I live in though, because no matter how much anyone tried to explain the part about living with silicone implants as a new tenant in my body, nothing anyone could have said would have prepared me for the feeling of them. No conversations, no analogies, no sharing of stories from other women who have them. Implants from reconstruction have to be experienced to really appreciate what I am talking about.

They are not bad, they are not good, they are just there. Living in my body reminding me that I am here and this is good. They are also reminding me that there is always a chance I won’t be and I suppose this is good too. The possibilities of not being here create a sense of urgency in my soul though that can often debilitate me into freezing on decisions instead of moving at the speed necessary to get the plans of action done in a time before the next thing comes at me.

The post time of reconstruction surgery is when the conversations need to be happening. This is when the dust has settled and there are no more frequency of doctor’s appointments to feel like someone cares about the trauma your body just went through. We are numbers in the world of reconstruction unless there is a problem or another diagnosis, we are on our own to figure out what all of this emotional roller coaster of feelings is about.

I am lucky. I have many resources. I know how to talk, to write, to take care of myself and my needs and I have the means to do this. There are thousands of women who don’t. Who are struggling with these rocky and uneven paths they have found themselves on and don’t realize they are not alone. GloriaGemma.org, in Rhode Island is a worthwhile and deeply authentic source. My new friend, Kristen Carbone, has just started a website for this very dialogue, brilliantly.co, because she chose to have preventative surgery and, she, too, realizes the need for conversation.


What I do know is that we need to talk about this. Often. Problems or no problems. Choosing reconstruction or not choosing it. Boobs are getting scooped out left and right, silicone is getting placed inside our bodies with a vengeance and as more and more women say yes or no to this, we need to stick together and TALK. Just to be sure that what we are all experiencing is moving up and out and not going down and under. Down and under creates stress. Stress creates cancer and we all know we don’t want any more of that.

AGING, Breast cancer, Women

THE AGING PROCESS

“Never get old,” the lovely woman with the kindest eyes and smile announced to me as we both found ourselves in the bra section of Target this past week. I was not really in the bra section, but the pajama bottoms I was looking for happened to be neighbors with the bras and underwear. A double mastectomy and reconstruction removes the need for the bra section.
The woman was one of those older women who was sprite and active, but as I watched her stand in front of the rows and rows of bras looking overwhelmed, she gave me pause.

“I’m ninety-five.” She said this as so many aging people do, stating their age to get the desired reply of, Wow, you look amazing. This woman did look incredible; in fact any woman out shopping alone at the age of ninety-five, as spry and together as she was, deserved the compliment. 
“Too bad you don’t live in Florida,” I said jokingly, “I could fix you up with my 102 year old grandfather.” She didn’t hear me and had already moved on to the sales girl who was trying to help her with the utmost patience and kindness. Go target sales girl, go.

I was reminded of the old time place my grandmother used to go to called Jean Belson in Boston back in the day when women actually got fitted for bras as a normal part of their lives. Before pushups and wireless took hold of our breasts and rib cages. This lovely lady looked like the type of woman who would have used stores like that, but now realized that this was a thing of the past for the most part and found herself in Target. Why she would even be buying a bra from my hippie chick perspective as I watched her astonished me. Ninety-five should be a free pass to go bra-less always, but this woman wasn’t that type of woman who would even consider this, I imagined. I was guessing she had outlived her husband as so many women her age have and was just trying to keep herself active and busy. Buying bras on a random day was another thing to do to occupy her time and have a purpose for her day. She looked like she was there solo, so I am also guessing that she is still driving.

The aging process comes out of nowhere. One minute you can’t imagine ever talking about aches and pains and the next minute you find yourself talking about your next doctor’s visit for some test they want you to have because of indigestion. These kind of discussions used to drive both of my grandmothers crazy. I can still hear my grandmother Isabelle telling her brother Eddie, “When someone asks you, Eddie, ‘How are you,’ you just say, ‘Fine;’ people don’t want to hear your belly aching.” Isabelle could not tolerate going out with her peers if they only spoke of their next doctor’s visit. She used to say that there were so many world events to discuss, why would people want to complain about their health issues all the time?

Aging sneaks up on you. One health scare, one surgery, and you are catapulted into the world of mortality. Life becomes shorter, more urgent, and you find yourself thinking Life is short with a vengeance. It starts with your eyesight. You need reading glasses all of a sudden. Next thing you are at the doctor’s office for a routine exam and your blood pressure is a little higher than normal or your blood tests came back with your cholesterol or sugar a little peaked. “We’ll keep an eye on this,” you hear your doctor say in the follow up phone call. This, of course, is code word for if you don’t get your shit together, it’s pharmaceutical time. There seems to be a pill for everything these days and many of the people I know are taking them with barely a question about the long term effects.

To each their own, though. Diet and exercise are barely talked about as a remedy for anything these days and even if one finds themselves in a doctor’s office where the doctor is recommending this, the patient would have to listen and take action where a pill seems so much more convenient. I get the temptation and another great part of aging is I have removed myself from the high horse I used to ride in lecturing people about the alternatives. Who the hell am I anyway? I was diagnosed with breast cancer twice in four years, so I surely have no credibility when it comes to preaching health and wellness equaling health and wellness.

The aging that is happening to me, as this fifty-four year old chick, is more subtle. I can hear my sixty-nine year old friends saying, “54? You are just a babe in the woods, just wait.” But the subtleties are making their way, inviting themselves to my body without being asked and the process is an interesting one. Frankly, this all started with my surgeries. Surgical menopause at fifty to remove my ovaries and fallopian tubes as preventative measures created symptoms of rapid fire hot flashes. I got through those, but now four years later they have turned into accelerated hair growth, not on my head, and bloating that is no joke. Everyone said it would happen, but I never thought it would. Besides the physical (and, I realize, completely cosmetic and superficial), there is the psychological whirlwind that has made me reconsider my life going forward.

What do I want? What do I need? What do I care about? What is important? And toggling between blowing all cares to the wind thinking that maybe my life is shorter than most and the what if I do live as long as my grandfather? When I meditate which has become almost a daily occurrence these days, the still small voice is getting louder with all kinds of messages about my future plans. Louder and louder giving me ideas about minimizing all my accumulations, like do I really need two shelves filled with Wonder Woman paraphernalia? Marie Kondo would have a field day with me as recently she seems to be the go to gal for all things declutter. I know what I need to do and it is extreme. This is how I roll though, all or nothing. I fantasize about not only removing half of my crap, but more so lately all social and technology. I was going to make a list of all of the technological distractions both mentally and financially, but part of me simply doesn’t want to know how much money and time I am wasting my life away on.

My precious life. My iPhone recently has gotten in the habit of letting me know at weeks end how much time I spent on all things phone and it is pretty frightening especially if I add it up over a life time. Time wasting used to be television time, but these days the world has their heads down and there doesn’t seem to be any going back to the ‘good old days.’

Aging is part uphill, part downhill and for the most part it is thrilling. The days, recently, that it hasn’t been is when I look down and see a bloating stomach and can’t attribute it to anything, or the rush to the bathroom because holding it isn’t what it used to be. Damn I wish I had listened to the Kegel advice from the old Cosmopolitan magazines when I was in my twenties before babies. The hairs sprouting, the wrinkles appearing, the interesting things happening to my neck all make for the best part. Looking at the young girls and knowing that that lovely ass and smooth wrinkle free skin is a fleeting moment in time for everyone. No one gets out alive, no one doesn’t age unless they don’t get out alive. I enjoy watching youth as much as I enjoy watching aging. Both give great gifts of reminders of the past and the time travel to the future.

For the most part, I am great. These new boobs have been mostly smooth sailing as I haven’t had the challenges so many women who decided to reconstruct have had. The horror stories are abundant, but in my case I had a perfect experience. The downside is that they are here with me and I know they are not part of my organic makeup. This makes them constant reminders of the past keeping that inner voice talking to me about plans of action for what and who I want to be when I grow up. This time though, growing up isn’t as far away as it used to be.

Breast cancer, Health, Women

MY BOOBS IN HINDSIGHT

“You know this is elective surgery,” Dr. Hottie said to me over two years ago. I love Dr. M almost as much as I love Dr. W. Almost. But let’s face it, Dr. M. is a male doctor and no matter how progressive, how much of a male feminist he may (or may not) be, he is not sitting in the chair across from me with having to make the painful choice of no breasts or reconstructed ones. He is a man. He is also a plastic surgeon and that alone should create a bias in the arena of female body parts.

Though I appreciated his candor at the time, I had four doors to choose from, two of which did not seem like options at all.

DOOR # 1 Do Nothing and Die at some point.

DOOR #2. Have a single breast mastectomy and wear a prosthetic like my grandmother.

DOOR #3. Have double mastectomy with no reconstruction.

DOOR #4. Have a double mastectomy and have reconstruction, (the “elective” surgery Dr. M. referred to back at paragraph one.)

I am guessing if he were about to face having his penis cut off and having no penis or one put on so that when he looked down at himself in the shower he wouldn’t look so different, maybe he would choose to omit the word “elective.” The word elective should not be a choice word anyway, though I appreciate the intent reminding me that if I really consider this as elective perhaps I may choose to be totally flat chested and remove all traces of the very female part of who I am. Call me vain, I don’t care, as I have said on more than one occassion, I like my breasts, I like the shape, the form, the wonder woman activation that a proud set of pointed boobs give me. 

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maybe this shirt will read, yeah their fake the real ones tried to kill me and the fake ones are too. I hope not.

I fully understand what he meant now that I am facing the two year mark and though I am not facing the horror show of what I may find if I typed in bad breast reconstruction in the Google search bar, my experience is much more subtle. Subtle in the way I would imagine that my comments would invoke maybe an eye roll or maybe the thought that wouldn’t be said aloud, It’s all in your head.

In the recommendations of drinking celery juice on a daily basis  (SEE IS CELERY JUICE THE NEW KALE?  for clarity if you are scratching your head here) I found the medical intuitive, Anthony William. Now before you start to want to punch me for even taking the word of someone who calls himself a Medical Intuitive, hear me out. He was recommended by a really credible and incredible Doctor I know and his advice, though not conventional in the least, has some legs because of his vast success. Believe what you want, but last I checked, the medical community as it relates to credible scientific research doesn’t always get it right. Think DDT, smoking, low fat, eggs, dairy, food pyramid, opiates just to name a few pesky mistakes. I like to think I am open to all possibilities when it comes to health, but more often than not, it is the knowledge of my body as my own personal science experiment that informs me.

And I have not been feeling right. Tightness in my upper body, bloating that has changed my lovely flat stomach into something I no longer recognize, weight gain, intense headaches out of the blue, gas, indigestion, joint ache and a racing heart, a little dizziness, a little nausea, sharp pain like cramps that come out of nowhere on the left side of my fake boob and lastly if this is all not enough, washing machine head on the spin cycle, not symptoms I regularly identify with, well maybe the last one.  If I had to draw a figure of myself on paper, I would draw a scarlet red rectangle from my upper chest to my belly button. When I am meditating, the image that continues to appear is the middle of my chest opening up and red cardinals flying out of it. Is this all in my head? And more importantly what are my options, medically? I suppose I could beg for MRIs and body scans and go digging for problems. Who wants to live like that? Not me for sure.

I decided to look up to see if Anthony William had any podcasts and no surprise here, of course he did. Lots of them. And as “luck” would have it, I landed on one called “Breast Implant Illness.” I did hesitate albeit briefly before I hit play, yet being a glutton for punishment, I proceeded. Probably not the best idea because Anthony, who by the way readily admits that the information he is sharing is not even discovered by science yet, and claims he is being informed by Spirit, a guide who speaks to him regularly. Roll your eyes here, I know, but you can also see my predicament of having to bring my new information to any doctor. He said something that struck me though so be patient with me and hopefully keep reading.

When there is a foreign object made out of synthetic material such as silicone, your liver sends out an army of enzymes to see what the hell is going on. The enzymes make their way to the implants and latch on looking to protect and get to the bottom of the enemy invader. Because the silicone is encased in some type of material, (I find it amusing that I don’t know the answer to this off the top of my head), the enzymes stay on the shell and this energy coupled with my body heat over time creates a slow porosity in the impants slowly seeping gasses from the silicone into my unsuspecting body. Now for you scientists out there- I have not a clue if there is any medical evidence out there that supports or denies this, but what I do know is that ever since these new additions have been placed in my upper half, I have had under the radar symptoms hard to put my finger on. Coincidence?

When it comes to history as it relates to science and the female body, I am not overly confident in our past. Though birth control has revolutionized a woman’s control of family planning, why is it that it is one of the top three questions I was asked after we discovered the breast cancer the first time? Women have been short changed in the health research department compared to our male counterparts for sure, yet we are so accepting of the words, They are totally safe, when it comes to the due diligence we think we are giving ourselves by timidly asking the question. When Anthony William said this on his podcast, it struck a chord with me and frankly it kind of makes sense.

Boobs are one of those body parts that seem to get a lot of press. When I did a quick google search the CDC only had leading causes of death since 2014, but the number 1 was heart disease and the number 2 was cancer, not breast cancer, but cancer. That is a lot of cancer. Heart disease isn’t sexy, it doesn’t sell lingerie, it is not as innocent and traditionally female as the color pink. Breast cancer gives permission to let the talk about tits and breasts and tatas and boobs out of the bag. When my son was at La Salle, a Catholic school in Providence RI, the kids were all wearing pink rubber bracelets that said I LOVE BOOBIES. This is the same school that took down the picture of our current Governor Gina Raimondo for allowing Planned Parenthood to support her. Mixed messages? I’d say.

Call me crazy, call me hysterical, call me an alarmist, but there can’t be a coincidence that I am having these subtle symptoms. And that when I bring them up, I feel guilty because frankly I am one of the lucky ones, I chose to have implants and I am alive. I didn’t have chemo, didn’t lose my hair, didn’t really worry about dying unless I had chosen Door #1 at the beginning of this party. 

I am not a scientist, I have never done research in my life, the last biology class I took was in high school. I fully realize the frustration that real scientists must have when they read these assumptions by lay people like me, unfounded in their own profession. I also know that by looking up regulatory history of breast implants in the U.S. on go to Google, some worrisome history came up relating to long term studies of silicone implants. More interesting is that the silicone implant doesn’t seem to have been studied for any length of time. When I say length of time, I am speaking what I would consider reasonable, more than ten years surely. This timeline in particular and the panels and votes raise my eyebrows. 2005 wasn’t that long ago. Though the implants were introduced well over 20 years ago, is that really enough time to develop a what if this happens, what could happen in the future? What is in silicone anyway? Who are on these panels anyway? Men, women, doctors, pharmaceutical executives? What informs them? All worriesome. 

What shocks me here is I never thought to ask. Perhaps knowing all of this would have made me make a different decision, I will never know. But even when I did ask, these subtle symptoms wouldn’t have been given much credence anyway because first of all, I don’t think many women are as in touch with the way their bodies tick and even if they were, there are so many factors that could explain this away. Menopause, empty nesting, emotional changes due to life events, death, divorce, previous thyroid issues, family history, not enough exercise, too much exercise etc. I could also add here the radiation dose I had from my first surgery, goodness knows what that did to my upper insides. After signing away my life in some hospital document that said that radiation could cause heart lung problems later on in life due to its close proximity, I am sure we can add this to the list as well. 

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a chick has to laugh, right?

Breast cancer is big business. For profit hospitals, for profit pharma, for profit doctor’s offices, what a woman is willing to do to keep the wo in woman is pretty shocking now that I have made that choice. What defines woman anyway. Breasts are certainly only one part of the recipe, but clearly they have been significant enough to warrant all of this writing. I am not sure where this will all take me and frankly I had never considered the possibility of their voluntary removal until I listened to this podcast. For now, I will continue to write and talk and see who writes and talks back. First step is awareness. And for sure these tatas have done nothing except made me aware.

 

2005 – April The FDA held an Advisory Panel meeting to review Allergan’s updated PMA and Mentor’s PMA. In a 5 to 4 vote, the panel did not recommend approval of Allergan’s PMA (due to a concern with one style in the application). In a 7 to 2 vote, the panel recommended approvable with conditions for Mentor’s PMA. The panel recommended that FDA require conditions including a minimum age requirement for augmentation and Post-Approval Studies. 
2006 – November The FDA approved Allergan and Mentor’s PMAs for silicone gel-filled breast implants.  This was the first time silicone gel-filled breast implants were available for augmentation, in addition to reconstruction and revision, since the moratorium was established in 1992.  As conditions of approval, each manufacturer was required to conduct 6 post-approval studies to further characterize the safety and effectiveness of their silicone gel-filled breast implants and to answer scientific questions that the premarket clinical trials were not designed to answer.
2011 – January The FDA issued a Safety Communication on anaplastic large cell lymphoma (ALCL) in women with breast implants.  Based on a review of the scientific literature, the FDA believes that women with breast implants may have a very small but increased risk of developing this disease in the scar capsule adjacent to the implant.
2011 – June The FDA issued an Update on the Safety of Silicone Gel-Filled Breast Implants. It included preliminary results of the post approval studies Allergan and Mentor were required to perform as conditions of their silicone gel-filled breast implant 2006 approval.
2011 – August The FDA held an Advisory Panel meeting to discuss and receive recommendations on postmarketing issues related to silicone gel-filled breast implants. Also discussed at this meeting were innovative methodological approaches to postmarket studies regarding silicone gel breast implants, as well as key long-term safety issues associated with silicone gel breast implants in the real-world setting.