It's Not About the Tits

My PRC friend Renee posted a blog about how cancer isn't pretty not too long ago. Like many of us, she is squeamish about all the pink stuff...the way in our culture breast cancer awareness had become something of a disease tied into a pretty little package with a pretty little bow. Well meaning friends and family send us pink ribbons and pink mittens and pink pink pink galore. Some of us embrace it. Some of us loathe it. Some of us (like myself) could give two shits about all the pink stuff, but while not much caring for it, love the idea behind the gesture when receiving the color pink. Pink has never been one of my favorite colors anyhow. I prefer orange, green, and blue. In that order actually. But I digress...her blog made me reflect because it struck a cord in me at how we as survivors contribute to the notion that this is a pretty disease the general public believes it to be a survivable disease, something if we are diagnosed with, there is enough research and science to get us through unscathed. We get the prize of the "perfect new rack" if we so choose. The general public isn't so aware that breast cancer comes in gobs of shapes and sizes and severity. It affects us for life. It changes our bodies' chemistry, our hormones, our ability to heal, our daily dose of medicine, medical maintenance, our appearances and our relationships to the people and the world around us. And yes, it can actually kill us. I can't tell you how many times I could be quoted as saying "Well, at least those breast cancer survivors got a new pair...I mean, there has to be a silver lining, right?" That was pre diagnosis. I can say something similar to that now, to make people feel comfortable, to look on the bright side of things, but behind that reality is the physical cringe I get that the former me actually mouthed anything like that out loud. Because I know that I was clueless. I was uninformed. And I couldn't possibly have known what those women before me had gone through to get that perfect pair of plastic tits, and I had no fucking clue what I would have to endure to get mine. I don't fault anyone for thinking this way. I don't fault myself for having thought this way. I just reflect on what part we survivors play in making it all look so pretty. As for me, I went into treatment with a handful of things that I knew would happen, surrounded by a million zillion scenarios that might alter those few known realities, and a million zillion things that I had no clue about that might happen to my body, my mind, my place in this world, my life. The things I knew were that I would loose my breasts, opt for reconstruction via implants, hoping for no radiation as to keep the likelihood of reconstruction simple, that I would most definitely be on hormone blocking drugs for the rest of my childbearing years, most likely preventing me from ever conceiving or carrying a child of my own, and that I would probably go through chemo. I grabbed on to two things that I had control over, and that I could turn into "sunshine shit pie" (a term I coined a few years ago. I really don't use it enough). I decided that I would use the loss of my hair as opportunity to play dress up with turbans and long earrings. I adopted a new style, altered my make up regimen, and set out to take photos of myself almost every day (that I got dressed) to share and connect with people in my virtual world that I wasn't seeing on a regular basis. I knew that they wanted to see a brave face. Instinct tells us that the people who care for us, the ones who pray and hope and want us to continue to live and to be present in their lives, really want us to look good, to feel good, or to at least look like we're feeling good. It gives them peace of mind. But it made me feel good too. It made me feel good to be able to embrace this change in me. It made me feel brave to look brave. It was almost like putting on a costume. But then the costume becomes you. And I think that's what happens...

I wrote that blog entry intro several weeks ago, before I went in for the second stage of my reconstruction surgery. Originally, as I was wrote, I wanted to convey to that, this being an entry not only about how we as survivors play our roles in society's perception of our disease, but also of body image issues and the havoc this disease wreaks on a breast cancers survivors image and acceptance of herself. I wanted to shed light on the fact that, although it may seem like a silver lining that we get new boobs...I can't tell you how many people have said, "well at least you will have perfect tits for the rest of your life." Well meaning, of course...that we often go through so much to get here that its not actually all that "worth it" and it isn't actually all that important either. I wanted to point out that while there are several different options for reconstructing a breast these days,one of the most common for smaller ladies like myself is one called the expander to implant method. What happens is that we go into surgery for a mastectomy, where every ounce of breast tissue is scooped from inside our breasts like a pumpkin, that tissue is sliced up like a loaf of bread and biopsied for cancer cells, and a plastic expander (balloon with a valve) is put in as a replacement. It is placed under the pectoral muscle. The nipples are most often removed. Some are opting for nipple sparing mastectomies these days. I did not. During that initial surgery the expander is filled as much as can be with saline so that, if we are lucky, we wake up with mounds that resemble breasts. Over time, we go in to our plastic surgeons offices to have a needle stuck into the valve in our expanders and we are injected with saline to grow our boobs before our very eyes, to achieve the desired size, usually a bit larger than the size we want to end up with. The expansion process hurts and causes some tightness in the chest...it is stretching your skin and your pectoral muscle out to help create a pocket for your new "breast". When the time comes, depending on your treatment regimen, you will go in for phase two of your reconstruction surgery and get your expanders swapped out for implants. There is usually a third surgery where nipples are made, using tissue from another part of your body, or the twist and sew method, like I was planning to have done. During this third procedure, oftentimes fat grafting is done or other methods of perfecting the placement of the implant. Then months later, you can get the aureola tattooed on. The 3D portion of your nipple often doesn't stay that way and flattens over time. The tattoos have to be touched up. The implants often have to be replaced every 10 years or so. This is another maintenance issue. Yes, they look great in clothes. Yes, they are perky. Yes, they look pretty close to the real thing. But look close enough and you know they aren't the real thing. Look close enough and you know those nipples aren't real. And most of all, you lose every ounce of feeling you had in your breasts before this happened to you. No sensation. Nothing. And then there is the risk of infection or other complications due to reconstruction or placing a foreign body in your body. As cancer patients who have gone rigorous immune altering treatments, we are at larger risk for these complications already. Throw in radiation and most of the survivors I know just cross their fingers and hope for the best. Hope they don't lose their skin, or that their end result will be symmetrical enough in clothing, or that they will learn to live with the discomfort the implants cause in the tightened, usually burned and radiated skin.

I am revisiting and revising this blog entry today from a perspective I didn't expect to be coming from at this point in my journey. I have gone through stage 2 of my reconstruction. I got my expanders swapped out for implants. I have since lost both of my implants, undergoing three surgeries in a 5 week period, due to infection. I am seeing my unreconstructed and mangled breasts for the first time since my diagnosis, 8 months ago. It is one thing to make the decision to lose your breasts all together, and then wake up with something in their place that looks similar to a breast. It is one thing to go through treatment with expanders. They are not comfortable. I liken the feeling to wearing footballs and an underwire bra under your skin at all times. But you get used to them. And they look good in clothes. You still have a womanly shape. You cant lie in your stomach. They don't bounce. They don't give at all. They aren't fun to fondle. I didn't feel super sexy naked, but I liked the way I felt in clothing, and I embraced it as part of my journey, most of all embracing the fact that with expanders, I did not have to wear a bra! But then this happened. I have no choice but to go flat until further notice. And it's not like I'm just a flat chested woman, or a woman who from the get go opted out of reconstruction so she has a nice smooth flat surface of a chest. I wore expanders for 6 months and had my pectoral muscles stretched and my skin stretched to hold a 400cc implant on each side. And now they are not only flat, but indented. And wrinkled. Mangled. I can't wear a shirt that doesn't show the mess that lies underneath. I have to wear a bra. Thank god I found a pullover bralette with a little foam padding that makes me look like a normal flat chested woman under clothes. But God, does this put a damper on some things. My self image. My ability to feel sexy. More than anything I was ready to get my "groove" back and this whole 3 surgeries in 5 weeks thing has really put a damper on the romance. My friend told me the other day, "I know this kicked your spirit down...you don't use words like mangled. You have always been so positive about all of this" He was reminding me that the important thing really was that I was alive and that I was/am in theory, beating cancer. But we talked about how ironic it was that one of the most life threatening experiences that I have had since diagnosis was that first infection, one week after implant surgery, when my body was this close to going into septic shock and I had to have emergency surgery to remove it, and it had nothing to do with my having cancer. It was technically a cosmetic procedure... I was one breasted for three weeks before the other one came out, because cultures showed that there was still yeast in the implant.


I guess what I'm trying to touch on is that not only is cancer not pretty, even pink ribboned breast cancer in all it's popularity, but it can be downright ugly. It can kick the shit out of us. And it's not just the diagnosis. It's not just the treatment. It's the toll it can take on our bodies as women, when we already live in a society that values very highly two things.. Hair and breasts. It's not easy. It is fucking hard. And I'm doing my best to put my best out into the world. And you know what? I am learning again and again and again that its not about the boobs or the hair. It's not about making yourself look pretty for the people around you. That can be fun, it can be embraced.. It can even be a silver lining in this shit storm of a disease. But that isn't what this is all about. One, it is about surviving to tell the tale, or telling the tale for as long as you survive. These two wrinkled masses of flesh on my chest bring this disease to a whole new reality for me, as I was caught up on finishing it up and getting back to the old me. Guess what? That person no longer exists. I am realizing that this journey is not about me. It's not about my boobs. My hair. My looks. It's about the ability I have to touch someone's heart, to receive kindness, to express gratitude, and to find the Divine working in my life and the lives around me. At this stage I know this. I have no breasts. I have a voice. I have learned that my instinct is connected to a higher power and that I can listen to it if I make the time to connect. And that I need to continue to write. To share. Because this isn't about me. It's about something bigger.

And with cancer comes...

One thing that this diagnosis has taught me is how limited our control is over life's momentum. Spontaneity has never been much of a thing for me. I like to plan things. I thrive on routine and I bask in an orderly and well arranged nest. I am always on time. I am not a fan of clutter. But, I am learning to operate under a new system of control. I am learning as I go what works for my body during treatment, how much I need to rest, how much I need to meditate, how much social interaction I need, how much I can handle and how far I can walk or ride my stationary excercise bike before I am winded and need to take a break. I am learning my body's new boundaries, and in learning them I am learning to accept and love it as it is. I have a body in transition. I literally live in a physical body of reconstruction. We all do. My transition is just more tactile than some. And it wasn't all voluntary. A large part of my personal spiritual practice is maintaining a strong mind/body connection. When I have felt the least alive is when I have suffered a drift of connection to my body. I can't tell you how many times I have gone to see my therapist in utter mental disarray, convinced I should be immediately medicated, to be gently reminded to sit and breathe, ask myself where in my body the pain or confusion is felt, and go there, breathe into it...sit in it...and possibly move with it. As a child I learned to dance and losing myself to the rhythm and the counts and the music and the repetition of rehearsal was therapy for me. Closing my eyes and chanting in a room of yogis is therapy for me too. So a common theme in my reckoning with breast cancer is working to overcome the challenges of a rapidly changing, unpredictable body, a body that I felt had somehow misled me, or turned against me. I thought I was on such intimate terms...but... I have to make a daily practice of trying to connect spiritually to a higher healing power, trying to connect with the depth of healing powers in the well of my deepest self, when at times, especially in the beginning of diagnosis, I couldn't look at myself in the mirror. I couldn't look myself in the eye. I couldn't take my shirt off in front of my wife. I couldn't fix my hair. I struggled for a grasp of how connection to this body could be possible at the same time that I was learning at a rapid rate what was about to transpire for me physically. I wrestled with avoidance but avoiding conflict of any kind is not conducive to my well being. So I started with confrontation. I needed to have a log of what was happening to me. If I log the pain, the suffering, breathe and move through it, like grinding a sore tooth until I can taste the blood, I will eventually find sense in the path that I chose. Eventually. Kayla is helping me log the physical transformation through photography. The images allow me to process what is happening in a new level. There have been moments of paralysis, moments of searing heartbreak. Then there are those sweet moments of peaceful surrender, when the stillness of the present pillows me with the realization that I am ALIVE, and I am finding an ease of grace through each phase of my physical appearance, navigating my way through this trial that tolls me from the inside out. There were many things that I have feared, many things that I desperately wanted to change, or feared I could never confront, that I am beginning to move through now. The change is inevitable. The ability to dig into and connect to the inevitability of it became more profound and more powerful under the knife of cancer.