[Angelina Jolie took tomb-raiding to a whole new level in her op-ed piece in yesterday’s NY Times. In the article, the actress/humanitarian/wife/mother/and not-just-in-the-movies-an-ass-kicking-superhero-of-a-woman, shared her own absolute reality of confronting the shit out of breast cancer—before cancer could even think of drawing its pistol out of its holster. She revealed she has the breast cancer gene and has taken decisive action against the BRCA1 mutation she inherited, by way of a recent prophylactic bilateral mastectomy. Reducing her risk of getting breast cancer from 87% to under 5% seems like a no-brainer. It also seems a little barbaric that in this day and age the best we have to offer in the way of a cure/prevention is amputation. Bravo, Namaste, Cheers to Jolie’s health, and props to her, not only for the extreme courage in making such a difficult choice, but also in sharing her story with the world. Her willingness to use her superstar status to increase awareness will save lives. Literally, raid tombs. Collaterally, Jolie’s article, which has gone viral, is bringing much-needed attention to some of the struggles carriers of the BRCA1 and BRCA2 gene face. In today’s guest post, SCAR Girl Sara “Bartowski” Hamilton, who has written HERE about her own struggles as a Pre-vivor, weighs in on the discussion.]
Guest Post by SCAR Girl Sara “Bartowski” Hamilton
I am incredibly thankful to Angelina Jolie. It has been six years since my own prophylactic mastectomy and every time I am sure we have finally made it over the hurdle, I become aware we still have so far to go. And every time someone famous uses their platform to raise awareness and educate the masses, they help us make progress. Because Angelina chose to share her story, more families will hear about the possibility of a genetic component behind family members dying of cancer. They may choose to seek out genetic counseling. They may start communicating about a topic that is very painful. Angelina Jolie talks about her beloved mother and the pain she has that some of her children will never know their grandmother. My mom carries the same pain – my sisters and I only know our Nona through photos and stories. Talking about what is tearing families apart can be difficult but maybe Angelina’s story will help people find courage to talk about the possibility of a genetic component. And having the knowledge of a genetic mutation will help people be able to make choices fully armed with the current research and knowledge we have available.
True to her humanitarian nature, Angelina openly discussed the costs of genetic testing. Let’s be real, for Angelina, this is a drop in her bucket but she understands those costs are going to be prohibitive to others. Immediately my mind went to the case before the Supreme Court and their upcoming ruling on whether or not Myriad will be able to hold a patent on our genes. The reason our testing is so expensive and, therefore, often not possible for those who don’t have thousands sitting in their bank account is because Myriad currently holds a patent. This patent has allowed them to keep the price high when, in fact, the testing should at most cost a couple hundred dollars.
Not surprisingly, I also immediately saw comments from those who show up to judge the choices Angelina has made. Having dealt with harsh judgment throughout my own journey from prophylactic bilateral mastectomy with construction to my recent “deconstruction”, the critics struck a sensitive chord that I feel I’m particularly qualified to address. I wish the critics recognize these choices are not entered into lightly and without heavy consideration. Understandably, this upsets some of my BRCA sisters. It is difficult to make such a life altering decision and then have a mob of cruel critics tell you that you were being drastic or rash. I encourage my BRCA sisters to take these judgments as evidence of the work we still have to do; we obviously have many people who still need to be educated. But don’t take it personally. Stand strong in the reasons you made the choices you made and let your story continue to be told to help those who come behind. Let it also continue driving us to actively embrace that we all have choices and we must reach out our hands to support each other in these choices. The choice to be tested, the choice of surveillance, the choice of prophylactic surgeries, the choice of reconstruction, the choice of being flat*. And every choice is valid. None of our choices are easy but we all make the choices that we feel are best for us in that moment. And I am a perfect example that sometimes our choices will change…and that is okay too.
Later this morning, Brad Pitt showed up for some mad love. He publicly commented on Angelina’s choices and said:
Having witnessed this decision firsthand, I find Angie’s choice, as well as so many others like her, absolutely heroic…All I want for is for her to have a long and healthy life, with myself and our children. This is a happy day for our family.
Maybe for some people it would seem strange that we applaud Brad for making this statement. However, I have talked to the women who decide not to go forward with a prophylactic mastectomy because their partner is not supportive. I have talked to women who are single who and terrified their decision will impact their ability to find a partner. In my own journey, I remember the very real fear and wondering if my husband would find me less than…and again when I was facing extraction I thought surely my hubby would never be able to look at me, touch me again. I love that Brad has spoken because he has given a voice to the men I know – my hubby, the husbands of some of my SCAR sisters – he has shown there are men who find the worth and beauty of a woman in more than her breast tissue. He embraces and admires Angelina’s choices and that is what should be and yet is often overlooked in our stories. I am incredibly proud of the men I know who embrace the choices of their partner and support them any way they can and I am thankful their story has a small piece of the spotlight today as well.
The fact remains, there is NO cure for breast cancer. It kills thousands every year. Genetic cancer, we are told, comes earlier and more aggressively. We also are told that we are at higher risk for recurrence. I pray every day a cure will be found…for my children, for my friends. We can all help get a little closer by not buying into the pink washing of our society – spend time reading about The SCAR Project, Bright Pink, FORCE. Do some hard research about where your donations are going and make educated choices on where you want your money spent. And start raising your voice with us as we scream for a cure.
Much love to you, Angelina Jolie. I wish you did not have to join our sisterhood but I applaud you, one of our newest sisters, for raising your voice and telling the world your story.
*Sara and fellow SCAR girl Barbie Ritzco have founded a Flat AND Fabulous awareness group on Facebook, and a Flat AND Fabulous support group page as well, for those living the Flat AND Fabulous lifestyle.
[Today’s guest blogger is no stranger to The SCAR Blog. When Facebook removed some of the SCAR images this time last year, Sara wrote an open letter to Mark Zuckerberg on her BLOG which I cross-posted here, with her permission. When quite a few of the SCAR girls were making preparations to head south for The SCAR BAMA exhibition, Sara wrote about it on her blog and once again I snagged it for reprint HERE (again, with her permission) because the SCAR sisterhood, which her article provides a lovely glimpse into, is one of the many beautiful things that has evolved from David Jay’s The SCAR Project Exhibit that many might be unaware of. When Sara got back from The SCAR BAMA exhibition, she wrote a beautiful recap on her blog, which of course also landed HERE, because she’s a generous soul like that, not to mention a dear friend. At which point I played both those cards in the latter part of the previous sentence and told her I thought with 3 SCAR blogs under her belt it was probs time for her to share her story. Of course, she did. And here it is. Thank you, Sara, love!]
by Sara Bartosiewicz-Hamilton
12/12/12…I call it my lucky day…the day my life started over. I had no idea how true this would be. Leading up to the 12th day of the 12th month of the 12th year, I was filled with anxiety, ready to have it over…at the same time, I wondered if I was sure. I kept telling myself, if ever I think I’m not ready, I’ll pull the plug…I still showed up. I started tearing up as the nurse prepped me for the surgery. She asked if I was okay.Yeah. She asked if I was sure I wanted to do this. Yeah. She said, it doesn’t make it any easier, does it? And that’s exactly what it was…I knew in my heart and my head it needed to be done…but knowing it, believing it, didn’t make it easier. Much like the beginning of this journey.
I was tested for a gene mutation in the fall of 2006. I knew I had a 50/50 chance of having the mutation…my spirit was prepared to hear I was positive. And I was. I was told I had the BRCA2 mutation and, through tears, I responded by asking the genetic counselor to set me up with what came next. She was confused. I was only 29, surely I could wait, surely I didn’t need to do anything until I was 40. Genetic testing was not new but it was not common yet either…I was the youngest person she had tested. I knew what I needed to do. I wanted to have a mastectomy. Take out the tissue that had an 85% chance of turning on me. Get it out, let me live my life. Let me give up this fear.
Fear. Our family tree of cancer explains my fear. In my mind, it was a matter of when, never a matter of if. I was surprised by some of the backlash I received from my choice to have a prophylactic mastectomy. I was naive. I was young. I didn’t realize there was a lot of fear behind that anger…sometimes, guilt. I couldn’t handle it so I shut myself away. I tried to find someone, anyone on the internet. My oncological surgeon told me she knew there were other young women choosing to have PBMs…I just couldn’t find any. I was isolated. Friends closest to me told me I shouldn’t do it if I couldn’t be happy. Happy? Was that what I was supposed to feel? I wasn’t sure what I was supposed to be happy about. This wasn’t a boob job. This was the removal of my body parts…my tissue ripped out of my body. And replaced…a plastic mound shoved under my muscle. A plastic mound that would grow over time as I was injected with more fluid, that would continue shoving my muscle around. And all of this to evade cancer…that may eventually come for me anyways.
A girl found me on MySpace. She was the one who told me about the SCAR Project and she asked if I wanted to meet her and a couple other girls in NYC to be photographed. I looked up the website and was speechless. I was looking at young women…I was looking at me. I immediately reached out to David Jay:
David~ I would like to be involved…I have never had breast cancer but have the BRCA2 gene (mutation). I had a prophylactic mastectomy at 29 because the gene (mutation) gave me an 85% chance of getting breast cancer. I understand your project is for women who have fought breast cancer but I thought I would volunteer in case you could use me as well. Regardless, I look forward to seeing the finished project. When I was getting ready for my surgery, I was desperately searching for what I would look like afterwords. I couldn’t find pictures of young women…this is powerful. Thank you.”
I was so excited (and terrified at the same time) when David wrote back and asked me to come. I wanted to participate because I wanted there to be a photo. I wanted the next 29 year old to be able to find my photo and be able to find the courage to have a PBM…to know she was going to be okay. I was terrified because I was going to be photographed. Because there would be a photo of me…there was going to be a photograph of my scars. There was going to be a photograph documenting myimperfection…
It didn’t help when I received an email that it may be best to wait. When I asked why, I was told he was receiving emails and he wasn’t sure what to think. I was devastated. And then I was enraged. I received a copy of the email because my sister went to bat for me and was sent a copy of the email:
Please re consider the shooting of Sara… She is Not appropriate for this project. she NEVER Had cancer. She only took off her breasts as prevention!!! Everyone in her friend circle and family knows that she is not stable to do this!!!! She does things like this for attention. Who??? Has a DOUBLE MASTECTOMY at age 30 when NO cancer is present??? Someone who is not STABLE. Her mother has NEVER had cancer. Her GRANDMOTHER has NEVER had cancer. This is not the same as your other candidates. PLEASE DO NOT encourage her behavior… Now. I say this with love but as you can understand MANY of us are tired of her charades. And having her half naked in a magazine for us all to explain to people who are AWARE that she NEVER had cancer in the first place. It makes a mockery of those women who have actually almost lost their lives.”
It was obvious to me this was not someone closest to me – my grandma did, in fact, have cancer, she had died of cancer. On the flip side, to be honest, I think it hurt so much because I wondered myself. Am I the only one who goes through a double mastectomy at 29 (ahem, NOT 30) without there being cancer present? As I tried to explain the untruth throughout the email, I expressed that I had been wrestling with guilt. Guilt that my choice was done out of fear…guilt that I was a sissy because I was too afraid to get cancer.
When I finally made it out to NYC, I had a lot on my mind. I had also received emails from this same person spewing ugly things. At that time in my life, I was unable to recognize that sometimes people are ugly because of what is inside of them…and it has nothing to do with me. I was unable to detach from their words, unable not to internalize them. While it didn’t stop me from going, it made me pause. Was I doing the right thing? I was the last girl to be shot that day. I arrived after everyone was done being photographed (read: dressed). I sat down and had my make-up and hair done and then it was time. The point at which I was taking off my shirt, it seemed like a really crazy idea. Other than my doctors, my hubby was the only one who had seen the scars and he saw them with the security of a dark room and, even then, I did what I could to hide them. I was asked beforehand to bring something that had meaning or relevance to my shoot. I brought a charm with a picture of my littles on it and I also brought a photo of my mom and two of her sisters. I had something which explained without words the reason for my prophylactic bilateral mastectomy and I had something to explain why I would choose this. David went with the photo of my mom and two of her sisters. I’m so thankful he did – for all of time, my photo explains the family ties and the multiple generations our mutation has affected.
Something happened at my photo shoot. Something I was not even aware of yet. I found a place where I belonged. A place of acceptance. A place of understanding. A place of love. I am forever thankful for my first SCAR sisters. They helped me embrace that my story was valid…they helped me see I was accepted into their “club” without having cancer. They helped pull me back on my feet when I didn’t even realize I was floundering. And they helped me grow taller that day. They were impressed by my courage and strength. I didn’t believe them quite yet but I held onto them, hoping they were right.
Fast forward a few years. It seemed surreal as I sat across from someone I called my best friend and heard similar words of ugliness being flung at me. Ironically, it was my five year “boobiversary” – five years after my mastectomy and I was being assaulted with words. Self-mutilator. In need of a therapist, not a surgeon. I had just disclosed I was planning on removing my implants. It was something I had been quietly considering for a while. I had not talked about it with many people: hubby, my plastic surgeon and with one of my SCAR sisters at the Cincinnati exhibit. I was having daily discomfort and pain and was hopeful that having my implants extracted would help relieve this. I was at the point of being ready to schedule the surgery and wanted the moral support of my friend…my “best” friend. I was caught off guard. The me who showed up for my PBM would have allowed this assault to continue until completion…the me who spent the past couple years embracing my new reality was strong enough to say stop…strong enough to walk away. Unfortunately, not before internalizing some of the accusations. I delayed my extraction for another year. I lived with the discomfort and pain as I searched my soul. I couldn’t deny what I was feeling but was I sure having my implants removed was the right choice?
I was back in Cincinnati when I had the courage to say it was time. I came home and the first conversation hubby and I had was that I wanted to schedule the extraction. It seemed like more than coincidence, perhaps a sign from the universe, when I was opening the mail immediately after our conversation and I opened lab results from my doctor confirming an autoimmune disease. When I had my pre-surgery appointment with my plastic surgeon, it was both amusing and sad to hear my plastic surgeon ask me what had taken so long. He told me he could tell this was the right choice for me…over a year before.
Fast forward to 12/12/12. My life truly did start over. When I woke up from surgery, the discomfort was gone. As my body healed, so did my spirit. I noticed I started looking at myself in the mirror without the little black box to censor what I was seeing. I realized I was the most comfortable I had been in my own body since my mastectomy. I found myself forgetting about the extraction and am no longer reminded daily of my surgeries, my BRCA mutation, or my lingering fear cancer will find me. Life started over, no longer hindered by the past.
I have been incredibly blessed – I always had someone in my corner. And, as my journey progressed, that corner became fuller and fuller. I choose to include the pain and judgment of the past because it is, unfortunately, what many women in my shoes continue to hear. However, while those hurtful words have no power over me, they give me the ability to reach out to someone else and say, I understand. I heard that too. I am hopeful that sharing will also help those who would place judgment to step back and recognize, it’s okay if you would never make the choices I made but it doesn’t give you the right to try to say you could live my life better than me. When I look back, I remember vividly the isolation I felt before my prophylactic mastectomy and again, feeling in the extreme minority as I was considering my extraction. I don’t ever want any woman to be completely alone. I recently started a Facebook group with my fellow SCAR sister Barbie – it’s called Flat & Fabulous. We are actively on the hunt for our fellow sisters who have had a mastectomy and, for one reason or another, do not have reconstruction. It has been both validating and heart breaking as I get emails from a stranger telling me she never knew there was someone else like her. Our page offers support, encouragement, and LOTS of laugh as we all go forward with living our new reality.
I recently wrote about The SCAR Project Exhibition in Birmingham and Joules texted me to ask if I would share my article here on The SCAR Project blog. About five minutes after she told me it was up and asked me to proof it, I received another text that said now that I’d written for the blog THREE times, but had yet to share my own SCAR story… “it’s time.”
So, this is my story. It spans over my lifetime. It starts at my mastectomy. And again at my extraction. I am incredibly thankful for the lessons I’ve learned along the way about love, friendships, life, and what is truly important. Trying my best to Live Sincerely.every.single.day.
[Follow-up guest post and recap of The SCAR BAMA Exhibition. This article is posted with permission from SCAR girl Sara’s blog and that link can be found HERE.]
by Sara Bartosiewicz-Hamilton
It has been over a week since I got back…it has taken me this long to try to digest it. I think I have been avoiding it because I am left with so many questions and so many hopes…and yet I know the reality of the situation as well. I apologize in advance for the bouncing around that is about to occur. You’ll get two gold stars if you follow me to the end…
I honestly did not plan to go to the exhibit in Birmingham, Alabama. It was three weeks after my extraction. Before my surgery, I assumed I wouldn’t be ready to be in front of people…after surgery, I thought I wouldn’t be feeling well enough to go. But then, Billy posted in the SCAR girls page that he had just booked tickets for himself and Vanessa. I should have known in that moment.
I first met Billy and Vanessa in Cincinnati. Billy is the ultimate host and Vanessa is the epitome of glamour. Hubby and I talked on the way home how we wished we lived closer because we enjoyed their company so much. Who doesn’t love a couple who hike all over the city trying to find you food, only to have to pack up and hit a White Castle and have lots of laughs while doing it! It was shortly after the exhibit that Vanessa started to decline in health, her cancer had returned and had spread to the lining in her brain…and then her brain.
|Live Sincerely party on the Purple People Bridge|
Vanessa has a motto – live sincerely. She started posting more and more about this motto, what this means. She and her sisters developed a website. And then she invited everyone to a Live Sincerely party on the Purple People Bridge. To be honest, I wasn’t sure what to expect that day. Vanessa was going through treatments…major treatments. I am quite certain I was one of those lame people who talked louder so she could understand me because that was so helpful…and I was uncomfortable with both Vanessa and Billy, unsure of what to say, and kind of hung out in the background. In reality, I was struggling with a few things that day. But that day was a turning point for me. I was truly trying to take one day at a time and was still having a hard time doing so. Watching the interactions and the love…watching the intent. It moved me deeply.
|Live Sincerely – spelled out in luminaries|
In the fall, the same gallery that hosted the SCAR project hosted Angelo Merendino and his exhibit, The Battle We Didn’t Choose. Vanessa had traveled to Cleveland and loved the exhibit and Angelo. It was brought to the gallery for her birthday. It was so special to watch Vanessa. It was hard not to notice the obvious connection between Vanessa and the exhibit. It seemed as though Vanessa was showing the rest of us what daily life might be looking like for her and Billy. I talked with Vanessa about what her favorite photo was…her all pink accessorized outfit…Live Sincerely (of course)…and watched her delight as she looked down to see the luminaries spelling out her motto.
|The beautiful birthday girl|
What do you get a birthday girl who is Stage IV and trying to show the rest of us how to embrace life and live sincerely? I couldn’t come up with a great idea so I came up with a dumb one instead…a life size Hello Kitty balloon. I was kind of worried it would scare her…thankfully, it didn’t and thankfully it didn’t terrify their dog and I found out in Birmingham Hello Kitty is still going…not too strong but her head is still inflated…um, that’s three or four months later?!? That’s the best dumb birthday gift I’ve ever come up with.
I will be honest…every trip I have gone on, I prepare myself that this will probably be the last time I get to see Vanessa. I go into it thinking this and I think this is why I become so awkward around her. I don’t want her to know I am thinking this…so I act like a kid trying to hide something naughty they have done.
This trip, it was different. Maybe, I am different. Since that day on the Purple People Bridge, I have challenged myself to think differently. To truly see the blessings, no matter how big or small, around me. To truly live in the moment, not in the past, not in the future…live in the present. So, for me, although at that moment I didn’t realize there was a shift in my brain, I saw Billy’s post and saw an opportunity to spend precious time with someone who has tremendously impacted my view on the world. It also seemed fairly miraculous in itself – I cried when the DC exhibit had been postponed because, in all sincerity, I thought it would be the last exhibit Vanessa would have been able to attend. So, here was the Birmingham exhibit and Vanessa and Billy were going. I woke up the Friday before with a sense of needing to be in Birmingham. I am incredibly thankful I listen to my spirit…I am incredibly thankful for a husband who supports me listening to my spirit.
|Vanessa & me with Flat Jolene|
My mission in Birmingham: Project Vanessa. I took the opportunity to be with Billy and Vanessa seriously…as serious as one can be when Billy is in the room. I felt incredibly blessed to be in the same state as them for multiple days, let alone the same hotel. And, lest anyone become concerned I was stalking them…well, I kind of was? But it seemed like they were both fairly okay with it.
When I first saw Vanessa in Birmingham, she looked so healthy. Yes, I see she looks different than when I first met her but she also seemed less tired or worn down than when I have seen her this past year. It took me by surprise, actually. And it made me pause…I had already been struggling with my thoughts. Over the past year, as I mentioned, I kept seeing Vanessa and thinking it was the last time I would see her. I began to consider that I was counting her out and she is still here. It frustrated me…I don’t want to do that…and I know Vanessa wouldn’t want me to do that.
It reminds me of a time in high school. I was brought to a hospital about an hour from where I lived…I was brought there to say goodbye to an aunt who had ovarian cancer. I was too young to remember how long she was in that hospital or how long it took but my aunt is alive and well today. And I began to wonder…why have I stopped believing in miracles? Why have I automatically assumed it won’t happen? I know I believed it couldn’t…I am unsure what I believe today.
|He was supposed to be taking the photo of Vanessa and me…BILLY!|
Vanessa was anxious to get to the gallery…we all were. Unfortunately, my group got a bit…well….lost. So, by the time we made it, Vanessa and Billy were on the hunt for food…Project Vanessa was not going well! (I just wondered, perhaps Billy had his own covert mission: operation avoid me!!) It was probably a good thing my group was so late…it made it much easier to find a spot to hide as I cried. It is a regular thing for me…surrounded by the beauty and strength of my SCAR sisters photos resorts me to tears. This time, it was a bit different because I feel different…as if those sisters are the only ones who truly can understand where I stand today…and a bit of gratitude mixed in…sensing I was exactly where I was meant to be in that moment.
Thankfully for me (and Project Vanessa) some of us met for dinner. I made myself a nuisance and sat directly across from Vanessa and Billy. It was the first of many conversations Vanessa and I (and Billy) had over the weekend. Yes, there were times where she repeated a story…like telling me about the leg warmers she was excited to have for the exhibit and thought she had misplaced. But it didn’t bother her when she asked me if she had told me about it yet and I answered honestly, yes. We just moved on. I watched as she took pictures…I don’t know how to describe it. It would seem almost like an OCD behavior but, at the same time, she was okay if she was encouraged to just stay in her seat and relax. I got to hear about her trip to Ten Thousand Villages to purchase ornaments for her nephews. She was so excited as she told me the process of picking them out (and getting to go in the back room to see the ones not on the floor yet) and how special it would be as they open them up even when she is no longer here. Yes, she openly says this…and, in a way, it was a relief – acknowledging this humongous elephant in the room. And, yet, we just moved on. I explained how I do the same thing with my kids – a special ornament every year and how they love it…every year, they are most excited to unwrap the ornaments that are their’s and hang them on the tree. Vanessa said she hopes it will be the same for her nephews.
Selfishly, I was relieved when she called me by name. Over the past year, I have assumed Vanessa didn’t know who I was. Yes, I met her before her health deteriorated but it isn’t as if we spent a lot of time together then. I have interacted with her over the internet but it isn’t the same. She has had a lot going on, she has been through a lot, it would have seemed totally normal to me if one day she looked at me and asked me who I was and why do I insist on following her around. So, to hear her say, Sara….it meant a lot…priceless, actually.
|Bacon lollipops – Vanessa gave them two thumbs up!|
The rest of the time, I just followed Billy and Vanessa’s lead. We ate breakfast together at the hotel. I got to see how Vanessa’s tastebuds might be a bit…off. It reminded me of the movie Elf (and yes, I told Vanessa and Billy this). Where Buddy (the Elf) puts syrup on spaghetti and is addicted to sugar. Vanessa made hot chocolate and then put sugar and cream in it. She ate waffles and needed cinnamon and sugar and syrup in each of the squares (actually, I have been known to try to have the same ratio with waffles and syrup). While Vanessa was eating her waffles, she talked about all kinds of things. I got to hear about the first time she met Billy…she talked about her wedding day and how Billy may come by being a smart alec quite naturally. It was so special to hear about all these memories Vanessa has…and interesting to watch her remember them but not quite remember if she had told me about those leg warmers yet.
At one of the breakfast dates, I asked Vanessa if I could look through her camera. After watching her at dinner, I knew her card must be overflowing. I wanted to get a glimpse at what she is thinking about, what is catching her eye. She graciously allowed me to look. It was fairly remarkable. I got to see the last several weeks of her life…some pictures that reminded me of the tag project but there were so many others that, well, they kind of took my breath away. What I saw must be what day to day life looks like when you actually pay attention. The details of a room…the artwork, the flower arrangements, the colors. The things we do to “finish” a look but then never pay attention to them again. Vanessa and Billy had gone to a restaurant called the Mellow Mushroom. Vanessa took all these photos of all these things in the restaurant. I went to the restaurant later in the weekend and it took me a bit to realize, I am sitting among Vanessa’s photos. She also had photos of an iron, standing up, laying down. Pictures like that. But I enjoyed the opportunity to see where her brain is at right now and watching it unfold in her pictures.
I tried not to pry. I asked how she slept, I would ask Billy how he was doing. When I got the canned answers, I let it be. I offered to take Vanessa with me to the store, I understood when the answer was she probably wasn’t up for it. I wanted to help and understood that helping might be just being present when asked. And I enjoyed every moment I could, listening to Vanessa, talking with her, helping her. It was beautiful.
|Vanessa reading her speech – that’s me holding the poster she made|
I watched with pride as Vanessa read her speech to the guests at the gala. Vanessa and I talked multiple times about how she didn’t want anyone to be upset she was reading her speech. She had written it beforehand because she wanted to be sure she remembered everything she wanted to say. I reassured her multiple times, people want to hear from you, they aren’t going to care that you are reading it. I was so happy when she gifted our new SCAR sister Leah with the Live Sincerely poster she had made. Vanessa was so excited about it. When I was arriving in Birmingham, Billy had texted me they were at a UPS making this poster. Vanessa had told me multiple times she would not be able to get it home and she wanted to leave it in Alabama with one of the local SCAR sisters. In fact, Vanessa was a bit concerned after her speech and after she explained she was giving Leah her poster that no one was coming up to take their pictures with it. Was Vanessa unaware of the people around her crying? the impact her speech had? I was too focused on holding that poster and listening to her speech and willing myself to think only about what was happening in the moment but I knew everyone was incredibly moved and just needed a minute to recover. Don’t worry, they will…they just need a minute. (And if you did, please make Vanessa’s day and go post your photos at her website!)
Even as I have been writing and rewriting this post…I have had a mix of laughter and tears. Much like the bitter-sweetness of the weekend, though, thankfully, I contained my tears to the one time at the gallery. Being thankful Vanessa was there, being slapped back to reality to hear Billy say it may just be him at the next exhibit.
I don’t have a grand finale for this post. In my mind, I still have many questions that may never be answered. Yes, I think about the miracle that occurred in my aunt’s life and I am now praying for the same miracle in Vanessa’s life. At the same time, I comprehend, as much as I am able to, how grim the situation is. Vanessa has cancer in her brain that is growing. The miracle of restored health, it might not happen. I am beginning to realize giving up on the belief of miracles may be a way in which to protect myself when it doesn’t come to fruition. Much like I have approached the times I have seen Vanessa over the past year as the “last time”. Because, if I prepare myself, it won’t hurt as much? In essence, it created a barrier between us and I am immensely thankful that barrier was not in Birmingham.
Perhaps, the weekend in Birmingham was the ultimate lesson in Vanessa’s guide to Live Sincerely. I got to spend an incredible time with her (and Billy) but I had to live sincerely doing it. There were no tears over Vanessa, there was no guarantee of a next time. It was living sincerely in the moment and being thankful for that moment.
|Clowning with my sisters|
Vanessa~ Thank you…from the bottom of my heart and soul, thank you. I love you~Sara
Updated to include a link to The Live Sincerely Project post in which Vanessa’s sister, Jessica, mentions part of my post. It is a great post that touches some of the same feelings I have…but be sure to check out the family photos at the end – hilarious!
[I first met today’s guest blogger at the SCAR Cincinnati Exhibition in 2011. Amber Crouse was one of the about 20 SCAR girls who made that first exhibition outside of the Big Apple so freaking amazing. For me, it was life-changing. One of the things that struck the most beautiful chord, which I can still hear to this day, was the delightful pleasure and deeply felt honor of getting to see the sisterhood of the SCAR girls. They. LOVE. each other. David Jay has said The SCAR Project is really not about breast cancer but about humanity and the scars that unite us all. I find that to be… so beautiful and true… and The SCAR Project Exhibition… such a profound visual aid… because the SCAR girls (portraits) don’t just hang on the wall next to each other… the SCAR girls hang out together. Many of them hadn’t met in person before the Cincinnati exhibition but you would never know that they haven’t been friends forever. Their SCARs have united them and bound them together, much like the stars and stripes wrapped around the girls in the portrait below. A picture is worth a thousand words, but I know many are curious about the story behind the photo of the four women draped in an American flag. I know, for one thing, because I sure as hell was. For another thing, people are always asking me about it. Since I was lucky enough to catch up with Amber at the Birmingham Exhibition I asked her to share the F*ck C*ncer Posse story here. Their story, is to the SCAR girls story, is to the sisterhood of this bitch that is breast cancer. It’s the club you don’t ever want to sign up for, but once you’re in it, you don’t want to leave. It’s a lot like Hotel California I guess;) Beyond all that, the story of the F*ck C*ncer Posse, is to The SCAR Project, is to the humanity that unites us all. Thank you Amber for baring your SCARs and your story.]
When I was diagnosed with Breast cancer in June of 2006 I didn’t have anyone to talk to about it. I went to The Cancer Support Community to a support group made up of much older women. I was 34 at the time, and they were all well over 50. They were really great and I appreciated their encouragement, but I needed to talk to someone in my shoes. Someone my age.
Lucky for me, later that year I met Kate. It was a day I will never forget. I walked into the chemo room and was surprised to see someone my age. She was 35. Without any introduction she looked up at me and said something like, “Dang girl, how big ya going?”
I liked her immediately. I explained that my expanders were horrible. One was lower than the other one and you could set a beer on the shelf that was my left expander. I had to wear a very padded bra so you couldn’t see that mess which made me look like I was going for a size D on my size 0-2 frame. We ended up leaving the chemo bar (as my good friend and F*ck C*ncer Posse member Karson calls it) with my husband Steve and her boyfriend and went to have lunch. We started speaking on the phone regularly.
We had no idea that we had just started what would become a much larger group of young women with breast cancer in Knoxville, Tennessee.
In March of 2007 Kate and I met Melissa at a retreat for Breast Cancer survivors at one of our local hospitals. She had a hippie, music loving vibe to her and I knew we would be fast friends. Her nickname is Giggles. How can you not love a giggler? We started going to shows together and I took her to Bonnaroo while we were both still in treatment. Quite an adventure and endurance challenge. She is a dancing machine and so much fun to be around. We chat almost daily online and see each other regularly. We act a lot like sisters.
Not long after we met Melissa we met yet another Melissa, or Em, as we call her now. Both the Melissas are geologists. They both had friends volunteering in Africa who kept talking about a Melissa in Knoxville with breast cancer. They thought it was the same person but turns out it was two people with parallel lives. They arranged to have beers and catch a concert at a local bar. I met up with them and we talked, laughed, and danced our butts off. These days Em’s off teaching and finishing up her PhD in Oregon. We miss her a lot, but she came to visit recently, and we all got to ring in the new year with her. Of course it was a blast having the whole FC Posse together again.
Karson was next to be added to our Posse and our name derived from something her husband said. He was telling someone that he couldn’t or shouldn’t do something because his wife’s cancer posse would kick his ass. I’m sure it was something funny. Jason is a great guy and I wish I could remember what it was. We always said Fuck Cancer and so The Fuck Cancer Posse was born. Karson is now in the IV club, which means that she has stage IV metastatic breast cancer. Karson is an awesomely sweet, kind, and gentle soul. She’s our girl and we all love her!
Melissa had read the call for SCAR models on the Young Survivor Coalition page that David had posted. She contacted him and asked if we could do a group shot and he said yes. There were supposed to be 6 of us: Kate, Em, Melissa, Me, plus a couple more FC Posse girls: Karson and Brynn, who couldn’t make the trip to NYC for the photo shoot.
Two days before the 2008 election, we were in his studio taking our shirts off. David had the idea to drape us in the American flag. Three of us were not very keen on the idea for different reasons. But then he explained that we were on the eve of a very big election and he was hoping there could be a chance for universal health care. “Framing” our picture in that context, he said he wanted to show that here are these 4 women under 35 (2 under 30) in the greatest country in the world but there is no guaranteed health coverage for them. So we did it. And it is beautiful. (Thank you, David.) I’m so proud to be a part of it and to have these great women for friends.
Steve and I traveled to Birmingham, Alabama last week for the opening of The SCAR Project and The Alabama Project: The Civil Rights of Health Care at UAB’s Visual Arts Gallery. I was happy to meet new SCAR/BAMA sisters, and to see Vanessa, our SCAR sister that is in hospice care. Please check out The Live Sincerely Project and read Vanessa’s story, then take the pledge with The FC Posse to Live Sincerely.
I wish David’s wish had already come true and that we already had universal health care in place now. Strides are being made to try to get more coverage to more people in this country, but it is still not enough. To see these VERY young women struggling to get adequate care is infuriating. They deserve better. We all deserve better!
We met Brigid almost 3 years ago when she joined The FC Posse. We became really good friends and she was my date for the SCAR Cincinnati opening. She has since become our SCAR sister as well. Brigid is sweet, lovely, a good listener, and a kick ass clothing designer.
No one really wants to join our Posse because you have to have cancer to be in it. But if you’ve got cancer, the F*ck C*ncer Posse is the group to be in. We’re all willing to chat with newly diagnosed ladies or gents, cook a meal or more for someone having surgery, give a ride to chemo or a shoulder to cry on. We raise funds and we throw parties. We do have “honorary memberships” for loved ones and caregivers. There are so many more great ladies in Knoxville (and beyond) that are part of our FC Posse like Sarah, Julie, Kristi, Brynn, our dearly departed friend Melissa who was our 6th Posse member, and there are many more… you know who you are. The FC Posse is always here for each other. The FC Posse has got each other’s backs. Click HERE to join the F*ck C*ncer Posse on Facebook.
[With The SCAR Project premiering in Birmingham this week, quite a few of the SCAR girls are heading south with the birds and tide…and the blazers for the cocktail party artist reception this Friday night at UAB’s Visual Arts Gallery. SCAR girl Sara is one of the many flocking together for the event. She worked out her pre-flight details in today’s guest post, which is also published on her blog: That Girl…tales from the edge.]
by Sara Bartosiewicz-Hamilton
This is my life…I had my implants removed mid-December…based on how I felt, I didn’t think I would be ready. At first, I thought I wouldn’t be ready because I would be self-conscious. After the fact, I thought I wouldn’t be ready because I wasn’t recovering as quickly. Either way, I thought I would not be going to the latest SCAR Project exhibit…and then…I woke up Friday with this urge. I wanted to be with my SCAR family…I wanted to see the photos…I wanted to be there. So, I texted my hubby who was getting off his 12 hour shift and headed to sleep in the parking lot of his barber until the shop opened…
I need an honest opinion of trying to go to Birmingham for a few days next week for the SCAR exhibit – I can’t explain it. I just feel the need to go.
And I just waited…I know I am spontaneous. I can change in a moment. Ahhh, such is life with me. The heart-warming part is the part where my hubby tries to understand, doesn’t always get there but has learned it is usually best to just let me go in whatever direction I’m trying…it may not work but NOT trying is usually worse. I was prepared for his opinion that this may not be best, I’m still not fully recovered…and, I had told myself, if this was his opinion, I needed to listen to him. Thankfully, he got home and told me to buy the ticket…do you know how quickly this can be done??? Within fifteen minutes, actually…flight booked, hotel called. And I’m headed to BAMA!!
This exhibit is a bit different – it started yesterday, the gala event isn’t until Friday. What this means? I’m not arriving until Thursday but am seeing photo after photo of the pictures being hung. I’m going NUTS!!! I just want to be there…I want to take them all in…each time is a little different, who is hanging, who they are hanging by. This time we have new photos and new sisters to welcome. I.can.NOT.wait.
So, I guess I’m doing a bit of my prep work here…online. And, I thought I would share with everyone else what this is like…in all sincerity, I truly believe EVERY single person in the world should be able to experience a SCAR Project exhibit because it is like no other. The photos grab you…meeting people…the love in the room…we love each other like family…the kind of family you actually want to be around. The SCAR models talk about the photos, we talk about our journeys but we really want to talk to you. What made you come see the exhibit? How did you hear about it? What do you think? Do you have cancer? Did you? Have you been touched by cancer? Maybe a friend…a cousin…your mom…tell me about your experience. Tell me what the photos mean to you from the perspective of your journey. It becomes one major love-fest and every single time I walk away blown away by the people I had the honor to meet and the stories I was able to hear.
The first exhibit, I was too nervous…I was welling up…and I am an ugly-crier. So, when the exhibit came to Cincinnati (still had to spell that twice to get it right!), I went to the gallery the moment I arrived. I thought if I was around the photos, I could get those emotions moving so I could be composed at the event. It worked. You know the feeling of coming home to your own bed after a trip? That’s the feeling I get when I walk into a gallery with the SCAR photos. I know the stories and the person behind most of the photos…I want you to love them as much as I do. But it also makes me reflect on my BRCA journey and the impact cancer has had on my life and in the lives of those I cherish…so it is a lot flying through my mind.
Those emotions are flying as I watch the pictures go up on facebook of the photos being hung in the gallery. The space is beautiful, as always. The photos grab me. I am “awww”ing at who is being hung by whom. I am wanting to reach out and touch the photo of my friend Gabrielle who was with me the day my photograph was taken…I am wanting to hug a SCAR sister as we look at Jolene’s photo.
I have never met or heard of anyone who was not changed by attending the exhibit.
I am incredibly excited. Can you tell?
People are never sure what to expect. I understand completely. Before the first exhibit, I was seriously stressed. What do I wear? What will it be like? Will I know anyone? I was grateful to have my youngest sister go with me and met up with two of my SCAR sisters who had their photographs taken on the same day so we knew each other. I didn’t even worry about my attire this time – I’m more concerned with every OTHER day since I haven’t figured out my summer attire with no implants…it is winter in Michigan so I can pull off a scarf every day.
Wear what you are comfortable in. You want to be in full on cocktail attire? You will fit in. You are more comfortable in jeans? You will fit in. Somewhere in between? You.will.fit.in. The reality is the photos take center stage and I don’t remember what anyone wears. Often times, I don’t remember what I am wearing until I start being tagged in photos. I actually changed into soccer slides last year because I had ridiculous heels on that I was not making it in. So, perhaps that is my one caution, wear shoes you want to be standing in for four or more hours. We’ll see if I’ve made the right choice this time.
|I’m not on the wall but I will sign
my photo in the book!!
I am so excited because a different sister will be joining me. Sharing this with those I love is like sharing one of the most sacred places of my heart. There is a bond with everyone in that room – I hope you are able to come. It is definitely not something you want to miss.
I will see you in Birmingham, Alabama!! (I am thankful I can spell this location without issue!!)
[If you are in the area, please be our guest at the artist reception Friday night. The event is free but please R.S.V.P. Click HERE for more info and to R.S.V.P. to the event.]
[Today’s guest post about The Alabama Project is by Cynthia Ryan. Cynthia is one of the co-producers of the upcoming dual exhibition in Birmingham, Alabama. The Alabama Project Exhibition will accompany The SCAR Project Exhibition at University of Alabama’s Visual Arts Gallery during its commemoration of the Civil Rights 50th Anniversary. Cynthia Ryan, Ph.D., is associate professor of English at the University of Alabama at Birmingham and a freelance writer. Check out her blog HERE. Besides all that, she also has been quite busy personally kicking breast cancer’s ass for the past 20 years. Namaste Cynthia. *Bows to your awesomeness* as I humbly hand you the microphone, the quill, the keyboard if you will. P.S. thank you.]
Guest Post by Cynthia Ryan
At 49, I’m twenty years into survivorship following my first bout with breast cancer. It’s been quite a ride, made all the more interesting since I joined The Alabama Project.
In September, David contacted me to ask if I’d be interested in writing about the experiences of five young breast cancer survivors from my adopted state of Alabama. He’d traveled to Birmingham and surrounding communities to photograph Leah, Brittney, Melanie, Whitni and Raquel, all diagnosed in their teens or twenties. These photos were different than the portraits associated with The Scar Project. They documented Alabama survivors going about their everyday lives, and all had stories to share regarding their unique journeys through the disease.
Taking on the challenges of survivorship day by day was an approach I knew something about. At 29, breast cancer became the backdrop to everything in my life. While existential questions about the meaning of life and death lingered, I had no choice but to preoccupy myself with the matters of surviving.
As many survivors will tell you, time and energy are swallowed up by the breast cancer experience. Visits to oncologists, surgeons, radiologists, social workers. Arrangements with family and friends for transport to said appointments and assistance with daily responsibilities as exhaustion and frustration settle in. Treasured downtime to heal body and soul.
By the time I reached 40 and a second diagnosis of breast cancer, my plate runneth over. Married with two daughters, 5-year-old Celia and 2-year-old Helena. A full-time job and pressure to keep on publishing. A new city and no extended family in sight.
It’s the getting through the everyday that challenges many breast cancer survivors and their loved ones and that, too often, gets relegated to the trivial. After all, we survivors are reminded to keep our minds on the big picture—completing recommended therapies, accepting a new normal, moving forward with our lives after breast cancer. Learning how to navigate the initial diagnosis and treatment plan and how to reach what lies beyond with our senses in-tact is far from peripheral, though. It’s as much a part of living as the promised restitution that may or may not become a reality for many of us.
Through the eyes of the Alabama women, I’ve discovered the kind of strength that every breast cancer survivor demonstrates both because she recognizes the importance of the life lessons the experience presents and because she must. Painful procedures must be endured. Bills must, somehow, be paid, with or without the grace of health insurance. Hope must be offered to our children. A new image must be confronted in the mirror.
[The Birmingham Exhibition will premiere January 7 and run till January 31. For more info, check out the press release HERE.]
[If you’ve seen the EMMY award winning SCAR Project documentary Baring It All by EMMY award winning filmmaker Patricia Zagarella, then you’ve already met the fabulous Sylvia Soo. She’s one of the fab four SCAR girls featured in the film. If you haven’t seen it… well… let’s just end that madness with the word “YET” —Ahem, if you haven’t seen it YET then it’s not to late! Just head over to your local Amazon by clicking HERE, then add it to your cart, press Proceed to Checkout, and voilà! Baring it All follows David Jay on an excursion from his life as fashion photographer into a world of young women scarred by breast cancer. Sylvia’s story, her absolute reality of surviving cancer as a young, beautiful, not to mention, fabulous, single woman, is not one most people would even think of when they think of breast cancer. For instance, Sylvia looks straight into the camera and says quite candidly, “How are you supposed to bring that up? Somebody asks you out on a date. Oh, by the way, I don’t have any hair and I have one breast.” Unfortunately, these days more and more young women are facing what they, we, even many doctor’s, all “thought” was “our grandmother’s disease”. That’s why The SCAR Project exists, that’s why David Jay takes their SCAR portraits, and that’s why these young women bare their scars. Sylvia and her sister SCAR girls face the camera the same way they faced breast cancer: with beauty, courage, style, grace, and fabulousness. Yes, it’s shocking to see breast cancer exposed like this, but… deeper than the shock… it’s inspiring to see what lies beneath the pink ribbons: S.C.A.R.s—not scarlet letters but badges of honor—these young women wear proudly and bravely bare in their SCAR Project Portraits. If that’s not cancer fabulous I don’t know what is. With that, I’d like to hand the microphone over to my fab friend Sylvia. Besides being fabulous herself, she manages the Cancer Fabulous web site where she encourages others to be cancer fabulous themselves, she’s working on a book called Cancer Fabulous Diaries, AND she has a short film called Dear Sister which is up for a prize for Rethink Breast Cancer’s Breast Fest coming up this November. All in a fab days work, yeah?! Anyway, please check out Dear Sister and vote for her fab flick HERE for the win! Voting ends September 14. So there’s still a few days left to stuff the ballot box for our Cancer Fabulous SCAR Sister Sylvia!]
Guest Post by the cancer FAB Sylvia Soo
I’d invited spoken word artist, Titilope Sonuga to perform at a charity event that I organized in 2010. She didn’t know me at that time, but by reading through my website’s (www.cancerfabulous.com) online diaries she was able to capture the essence of my motto “cancer fabulous.”
(written for Sylvia Soo)
By Titilope Sonuga
Be cancer fabulous
Be bruised battered
but never broken
carve a space
in this world
to love yourself in
even as they carve
through your chest
pump through your veins
wrap you in gauze
hold it up
like a shield
against your heart
nothing to you
when the odds were
one in ten
one in a hundred
one in a thousand
you were that
that one who
clung to life
when it was easier
off bathroom floors
wiped the tears from
last nights food
from your mouth
and did the impossible
refused to lay down
and give up
surrender or retreat
this is what beautiful
it is raw and uncovered
it is bald and stunning
it is twisted and tangled
It is a crocked line of scars
towards a heart
big enough to
love a nation
this is what beautiful
it is what exists
when we are broken
down past ego
when we are faced
with a body that sends
in the form of
a painless lump
when we are forced then
to cling to a soul
that refuses to
this is what beautiful
So you bare your scars
for us to look upon
so that we can trace them
towards our own understanding
remind us that
there are no
for your smile
there is no
there is no cure
you remind us
really looks like
After reading the poem, one blogger wrote: “I honestly see nothing beautiful about cancer nor having to deal with it.” That blogger didn’t get it.
Yes, there is nothing fabulous about cancer. There is nothing fabulous about having your body scarred, having to take chemotherapy or puking in toilets. There is nothing fabulous about watching a loved one die. However, there is something amazingly beautiful and amazingly fabulous when someone goes through such hardship and turmoil with grace and strength. This is what cancer fabulous is about.
Perhaps it is media that has us thinking that cancer patients are weak, frail baldheaded aliens who are just waiting to die. These past three years I have met many inspiring people with such incredible spirit. These women are not ready to throw in the towel, but they fight for their lives. They have something to say. They are not willing to remain silent. Many of these women are subjects of the SCAR Project.
I chanced upon The SCAR Project during a 2009 Google search. I was 25 years old, and had just returned to Canada upon completion of an overseas contract. One week after I returned home, I was diagnosed with breast cancer. My surgeon gave me an option to choose a lumpectomy or mastectomy. Nights before my scheduled surgery I found the startling SCAR images, and I decided to have the mastectomy.
With one breast, I forged ahead with my summer. I stepped out into the chemo ward with my stilettos and I held my baldhead high. Time continued and the drugs began to take their toll on my body. I stubbornly mascara-ed the very few eyelashes that were left, and painfully slipped into my dignity. Those were challenging times.
While I was on-set of an independent movie, David Jay and I finalized my plans to fly to New York City and participate in The SCAR Project. Upon leaving set, I flew out to NYC. The photo that was chosen was a candid one (at the top of the page). I remember we were laughing at what someone said. I’m overjoyed that my picture does not depict sadness. My journey was much more than sadness.
These days you’ll find me working on my book, Cancer Fabulous Diaries, a collaboration with Rethink Breast Cancer; planning to become an entrepreneur in 2013, and always planning my next travel destination. Looking back on my life, I am amazed at all that I have been through, and excited for all that is to come.
[In my continuing series of guest blogs by SCAR Project participants, I’d like to introduce recently wedded Mrs. Bud Adams aka Melissa, the pink cowboy boot wearing Cancer Fighting Princess. I met Melissa at the SCAR Project’s world premiere in NYC in October 2010. This is a re-post of her guest blog for the SCAR Project Cincinnati Exhibition last October, but it seemed apropos to republish after Lauren’s “Breast Cancer is Not a Scarlet Letter” post. I think you’ll see why in her post and her beautiful SCAR portrait. Breast cancer leaves more scars than the ones on the chest, more than a pink ribbon can cover. This is the absolute reality of being a young woman surviving breast cancer. It’s my deeply felt honor and pleasure to know many of these young women, who have boldly gone where women hadn’t really gone before, in baring their S.C.A.R.s with such courage, dignity, and grace. In doing so, they share that courage with others confronting the same absolute reality of surviving cancer. And, they expose breast cancer for the wolf in pink clothing that it really is. The damsels are in distress, and it’s not just our mothers and grandmothers. Unfortunately, more and more these days, breast cancer is also picking on our girlfriends, sisters, even daughters. Damn cancer. Seriously. Let’s get serious and put an end to this damn disease.]
Guest Blog by Melissa Adams
I was diagnosed with genetic Stage IIA cancer on March 15, 2007 at the age of 31. I had invasive ductal carcinoma and ductal carcinoma in situ.
I found my lump on February 20th. Called my doc and was told to wait a week. Called back because it was still there and went in for an exam. The doc seemed to think that it was nothing and assured me it was not cancer (even after I shared that my great grandmother and uncle both had cancer—he said they were too distant!) But sent me for a diagnostic mammogram and ultrasound just to be safe. Those procedures were followed by an ultrasound guided needle biopsy, which by the way was the worst pain I have ever experienced in my entire life, still to this day. It took about 2.5 hours and I felt all 7 times they went in, despite being given a local anesthetic, twice. I bled for 6 hours after that procedure.
I got “the phone call” at work at about 8:30 on March 15th. The doctor who called me was one I didn’t know and hadn’t ever worked with—I work in a place where doctors frequently call my office so it never occurred to me who she might have been. She identified herself and the only thing I heard was “I don’t know how to tell you this over the phone.” I never heard her say breast cancer or you have or those two phrases together. I started screaming and crying even though I had spent the last 3 weeks researching, preparing myself, and convincing myself I would not be devastated. I was devastated anyway. My world turned completely upside down.
I don’t remember much of the day or the weeks ahead to be honest. I had an all day run at the hospital on March 21st where I met with surgeon, geneticist, and had a bunch of tests done. I was tested for the BRCA1/2 mutation—found out that there is a lot of cancer on the biological paternal side of my family. In fact, I am BRCA2 positive and as if having cancer alone wasn’t devastating enough, I got that punch in the face because it came from a biological “father” who has never had anything to do with me my entire life. I was able to joke about it though and told everyone that it confirmed that I’m a Teenage Mutant Ninja Turtle.
My surgeon recommended complete removal of the right breast because it could not be preserved with all of the cancer in there. She recommended removal of the left given the mutation. I had my bilateral mastectomy with immediate reconstruction on May 3rd (my step dad’s birthday). I opted for implants though I had been so against it from the beginning. During the surgery, the doc discovered that my margins were not clean and had to remove additional tissue down toward my upper abs and pectoral muscle but the margins were still not clean.
Though I was initially told I would not have to do radiation, it turned out that when they discovered the unclean margins, the radiation oncologist recommended I do it (by the way, it is not common practice to do reconstruction prior to radiation). So I was “pumped up” on the fast track plan…from about June until July and then on July 16th (day before my birthday) I had my expanders swapped out for the implants. I underwent 30 rounds of radiation therapy, which caused significant damage to my right implant. I suffered from capsular contracture, which is hardening of the implant, and I was lopsided! I had to wait to be out of radiation for 6 months before I could have my next surgery to fix the damage.
On May 8th, a year and 5 days from the one-year anniversary of my first surgery, I had surgery to remove the latissmus muscle from the right side of my back to bring it around and recreate my right breast. I had to have expanders put in again and went through the “pumping up” process all over again. In August 2008, I got my new and improved foreigners (that is what I call them).
Since I’m a BRCA2 carrier, I go every 6 months for ovarian cancer screenings.
This year of all years has been the most challenging for me. In January, they found something that appeared semi-solid on one of my ovaries. My CA125 levels had been in the normal range previous to this but had nearly doubled.
It was and always has been recommended that I have my ovaries removed but I’m not mentally or physically ready for that.
I went for a 2nd opinion where they scanned my entire body. They discovered an area of uptake on the CT Scan on the right side of my implant. In additional scans to continue to monitor, they also discovered on the CT Scan that I have a dilated aorta and come to find out that I have a significant history of heart disease on my mom’s side of the family. Now I see a cardiologist for that. So that is my story and where I am with my health.
I found out about the scar project through the online Susan G. Komen forum. I had emailed David Jay a few times about the project. I decided to participate because for me, from the get go, I knew this would never be about just getting through it. I whole-heartedly believe that I was meant to do something with this experience. My goals in life have always been to change a life, make a difference, and touch a heart. I never imagined I would have to get cancer in order to do that but that is just what happened. So I wanted to put myself out there as another young face of breast cancer.
I emailed David Jay so many times because I looked at his site and saw that all of the women had taken pictures with their shirts off and exposed their breasts. There were multiple reasons that I wasn’t willing to do that. One is that I work in public education and though this project is considered educational, I wasn’t willing to take the chance on losing my job over it. Even if I didn’t work in public education, I still wouldn’t have exposed my scarred breasts to the entire world. Up until very recently, no one other than my doctors had seen me without a shirt on. For the first 3 years or so after the reconstruction I could never look at myself. I would purposefully step away from the mirror when I was getting undressed. I think it was a lack of acceptance that this was my reality.
I can recall the day that I undid my dressings after my first reconstruction surgery. I was at home by myself recovering from the surgery. I decided to take a shower but before I did, I wanted to look. I undid the dressing and was completely devastated at what was before me in the mirror. I screamed and cried. I sobbed the entire time I was in the shower. I didn’t even know what to do with myself. I cried for hours and hours after that. One of my best friends had tried calling me that day and couldn’t get in touch with me. Finally, he decided to just come over and found me sitting on the back patio sobbing. It was probably the lowest point I had during my journey. All along all I ever wanted was to have “me” back. I have come a long way from that point but I still struggle with it, as many other women do.
This is what I wrote on my caringbridge site last year after going to the exhibit:
Before we even walked into the exhibit, I was overflowing with emotions. It is hard to explain what it felt like to look through the window and see my picture hanging on the back wall. There were a thousand emotions running through me…it was bitter sweet in so many ways. As we were doing the gallery walk, I was in tears. At one point, David Jay asked if anyone wanted to lead the gallery walk and Flora so kindly selected me. I, of course, went over to my photo. David Jay asked me to share a little bit about my story and so I did. I was crying the whole time. It was hard to look at my photo but at the same time, I couldn’t stop. It was hard looking back into the crowd and seeing my friends with tear-filled eyes too. There were several other girls that took part in the project that shared their story as well. At some level, it brought a sense of closure for me to that part of my life. I wasn’t sure I would have ever been able to look back at that photo and not see it as something that had complete control over my life but I was and I was filled with a sense of relief that finally I can move forward from that dark place.
I am hoping that this project is an eye opener for everyone…particularly anyone that seems to think that mammograms should be conducted once a woman turns 50 and for anyone that thinks self-breast exams and mammograms don’t save lives. We are all faces of proof against both of those ideas.
It is overwhelming to see my photo as a part of this exhibit. It almost seems surreal at times. Last year my photo was used for an article on AOL health and people were calling, texting, and emailing that they had seen my photo.
I was single when I was diagnosed with cancer. Had never been married and wasn’t dating anyone. I was convinced that no man in this world, especially my age, would ever be interested in me because of the breast cancer and because statistically I’m at risk for recurrence or ovarian cancer. I remember standing in my office at work talking to 2 of the secretaries about my upcoming mastectomy and was crying as I asked them, “Who is going to love me now?”
At some point along my journey, I had accepted this and seemed to be somewhat okay with it. On May 6th (the one-year anniversary of my lat surgery) I met Bud.
Bud and I hung out several times and eventually started dating. He bought my engagement ring on February 20, 2010 (the three-year anniversary of the day I found my lump).
We got engaged on May 17, 2010 and married on July 16, 2011. For me, it was a bittersweet day because it was the anniversary of one of my surgeries…but…it was also the day I married my best friend.
I never saw this day coming because had lost all hope that anyone would ever love me after all that I had been through. I had chalked it up as one more loss to the cancer. But then I met Bud. He loves me unconditionally. Never once did he look at me as the girl with cancer, he always saw me as just Melissa. He taught me that I am worthy of being loved but more important than that, he helped me in the process of learning to love myself again. Even when I told him early on (before we were officially dating I believe) that I would never have children because of the 50/50 chance of passing it on to my child, he still pursued me. There have been times when I feel as though he deserves so much better because he is such a great guy…he should be with a woman that has her real breasts, someone that doesn’t have to eventually have to have her ovaries taken out because of the risk of additional cancer, someone that doesn’t have such a high risk of recurrence or other cancers, and someone that can/will have children because he would be a great dad. But he loves me for me and wouldn’t give me up for anything.
Bud and I founded Cancer Fighting Princess in October 2009. It started out as a conversation, about me and about having a web page about my experience. He asked what I would call it and I said “Cancer Fighting Princess, duh!” From there evolved the idea to start a charity. We have decided to focus on supporting young women currently undergoing treatment for breast and/or any gynecological cancer.
[I met today’s guest blogger at the first planning committee meeting for The SCAR Project DC exhibition. I was instantly drawn to Lauren, not just because of her striking though gentle beauty (as you can see in her SCAR portrait below) but also (as you will see when you read her story) because she is a kindred writing spirit. Since getting to know her something else that really puts the L in Lauren, methinks, is best summed up in some lyrics she posted recently on Facebook: “Until the referee rings the bell/Until both your eyes start to swell/Until the crowd goes home/What we gonna do y’all?/Give em hell, turn their heads/Gonna live life ’til we’re dead./Give me scars, give me pain/Then they’ll say to me, say to me, say to me/There goes the fighter, there goes the fighter/Here comes the fighter/That’s what they’ll say to me, say to me, say to me/This one’s a fighter.”* Which is summed up perfectly, methinks in the slideshow I’ve added at the end of her guest post.]
Guest Post by SCAR Girl Lauren
As a healthy and active young woman, I was under the impression or, in hindsight the delusion, that I was impervious to life-threatening illnesses or events. I simply believed that if I worked hard and was a good person that life would reciprocate in kind. So when I was diagnosed with breast cancer in September 2009 at age twenty-eight, while my husband was on his second tour in Iraq, you could imagine that my naive “vie en rose” attitude quickly shattered. I was left asking the question “why?” Why had this happened to me given that breast cancer is considered an affliction of the post-menopausal woman? Had I done something wrong during my early years (an occasional drink too-many in college) or did I have some genetic component lurking in the family pool that I didn’t know about? But like so many women slapped in the face by cancer, I didn’t have much time to dwell on these feelings. A bilateral mastectomy on October 16th quickly made me realize that shitty things can happen to good people and that there was simply no rationale for it.
Looking into the mirror for the first time after my surgery was a truly humbling experience and visually captured, for me, what “surviving” cancer really meant. That whoever I once was, I would never physically be again, that my new corporeality was an altered one that I would have to get used to. Removing the gauze pads revealed swollen water-filled pseudo breasts and bruises around my incisions. I no longer had nipples, but in their place I had angry looking scars. The one on the right ran the length of my breast and curved up toward my armpit in a smirk, a fitting visage for the “diseased” betrayer of my body. The left breast had a small straight line, like a mute partner guilty by proxy. I also had drains protruding from under my arms, the bulbous grenade portion of which was cradled in a little fabric belt that was slung around my waist. I felt alien, ugly and more like some macabre B-movie octopus than a woman. As I inspected myself in the mirror, my husband drew warm water in the pink plastic basin they sent me home with from the hospital. He gingerly took the washcloth, soaped it up and helped to bathe me and wash my hair. I didn’t have the energy to do it myself.
I couldn’t believe the spectacle I saw reflected back at me and I began to cry. I never had to depend on anyone for this kind of daily activity and yet here we were. I get that in our marriage vows we agreed to be there for one another in sickness and in health, but I never imagined that we would test the theory when we were so young. Extremely self-conscious, I wondered how Mark felt to see my body reduced to something unfamiliar and bizarrely reconstructed. How could he find me attractive anymore when I was so changed, having lost those attributes which society deems so intrinsically feminine and esthetic? While such thoughts may seem superficial, addressing the feelings surrounding the physical alterations of my treatment really forced me to reexamine who I was aside from societal standards of beauty and worth. And though it has been a long and particularly emotional struggle to come to terms with my post-cancer body, what I’ve learned on my expedition through illness has been liberating and transformative – especially when it comes to David Jay’s The Scar Project.
I randomly navigated to the website one afternoon, curious as to what breast reconstruction looked like for other women my age. The first portrait I came to was this stunning image of a pregnant woman with a deep scar in place of her right breast, her fair skin radiantly contrasted against a dark backdrop. I remember how strong and unapologetic she looked. “This is who I am” she seemed to say to me from the screen of my laptop. At that moment, hope blossomed. I, who have yet to have children or to learn if that’s even feasible at this point, could now imagine the possibility that cancer had not usurped the opportunity of motherhood from me because there was Emily, as bold and brave as an Amazon, defying cancer and not only living life but creating it too! Her strength and courage, along with the photos and stories of other SCAR models (a shout out to Vanessa, the two Saras, Eliza, and Barbie) have inspired me to participate in the Project so that I too can do my part to increase awareness of young women’s vulnerability to breast cancer.
I consider it an honor to be a SCAR model; that photo shoot with David meant so much to me. For the first time in a long time, I felt beautiful and actually portrayed as who I truly am. I’ve since realized that my scars are not damaging scarlet letters of disease and imperfection so much as they are physical testimonials of my journey upon this earth. My experience with The SCAR Project has not only facilitated the acceptance of my wounds (physical and emotional) to find the beauty, grace and peace from within, it has also allowed me to transform my breast cancer into something powerful that will impact others. Whether that means showing young women with breast cancer that they are not alone in their experience or illustrating what reconstruction can look like – it definitely affirms that the reality of breast cancer has nothing to do with pink ribbons, commercialism, or walking until doomsday. All you have to do is look into a SCAR model’s eyes to grasp what reality is for the women photographed and to sense the collective frustration that we need to find a damn cure already. While I love my fellow SCAR sisters, there are already too many of us (including women in their teens, early twenties and thirties we’ve lost to this disease) for society to maintain the status quo of what they call breast cancer “awareness.”
[I met today’s guest blogger at her SCAR photo shoot in DC this past spring when the cherry blossoms were all abloom and decking out DC for its annual festival. How. Very. Apropos. Methought as I watched this beautiful, courageous, WAY TOO FREAKING YOUNG woman bare her S.C.A.R.s for the camera. At first glance, Eliza’s bright blue-eyes distracted me from the fresh red “angry scars”—as she calls them. Her absolute reality of surviving cancer is as different from mine as my scars are from hers. Mine have faded a bit, as I’m a wee bit (ok, OK… she’s exactly HALF my age but TWICE me in wisdom and stature) older than my younger survivor sister. Mine look more like Japanese symbols for WTF? and are therefore not nearly as angry—though I definitely see red when I see hers. I’ve read before that “the fragility of the cherry blossom is the fragility of human existence.” This was just poetry before I met Eliza. She is currently the youngest of the SCAR girls. Eliza just finished grad school in May and turned 23 in June. Oh, and is planning a wedding. While fighting cancer in her spare time, after being diagnosed earlier this year at twenty-freaking-two. She calls herself an anomaly. I just call her awesome. As I’ve gotten to know Eliza I’ve come to see that beneath that beautiful pale skin is fierce hope unfading, which the sunlight dancing upon it only highlights.]
Guest Post by Eliza Hewitt
First of all, I should probably state that I’m only 23, a fact that I hope will shock anyone who feels that they are too young for breast cancer. Before my diagnosis, I was your average grad student working four or five jobs to avoid going further into student loan debt and working out the plans for the wedding of my dreams.
The discovery of my cancer has a tragically humorous story behind it. July of 2011, I decided I was fed up with my breasts. They hadn’t grown since middle school so I resolved I would subject them to a breast augmentation surgery. With a coupon for a free consultation in hand, I dragged my fiancé to the plastic surgeon’s office. I remember seeing a placard addressing the office’s policy on insurance covering the surgery if it was for reconstruction. So, as I’m sitting there waiting to meet with the doctor about a boob job, I remark to my fiancé, “Man, wouldn’t it would be great if I got breast cancer because then I wouldn’t have to raise the money for this boob job?” BOOM. There. There’s the awful punchline. I was a baby then and had no idea that the idea I said in jest was really a terribly callous joke that would come back full swing five months later.
Sitting on the exam table, the doctor found a pin prick of a lump on my right breast. He raised his eyebrows and asked if I knew about this. A part of me was embarrassed that my body could have something that could prevent surgery, especially since my regular doctor had not found anything during my annual visit two months prior. So I lied. “Of course, I know what that lump is,” I said. He told me to get it checked before the surgery plans could progress. I said that I would but already my mind was thinking that I would have to get back to work. Besides, I was 22. The world was at my feet and it was probably some dinky little cyst that would fade back into my body eventually.
So I sat on my knowledge of the lump for five months.
I filled my schedule with work and classes to avoid having to think about what the lump could be. In December of 2011, I had an unrelated surgery on my tailbone and a few days later, I started finding blood in my bra. Then, my skin felt hot and I noticed that the lump felt bigger. Oh no. Now, I’m going to have to call my doctor and admit the truth and growing evidence in my boob case.
Five months. It didn’t seem like a big deal.
In the end I couldn’t face telling my doctor’s office that I had avoided getting my lump checked out and now my boob was being weird, so I turned into a five year old and asked my mother to call. As she was describing my symptoms, it began to sink in how idiotic it was to think if I avoided something that it would go away. I call it the Ostrich Solution to life’s problems.
Five months. Is. A big. Deal.
The urgency in planning an ultrasound and then an ultrasound guided biopsy on the same day told a story that sent chills up my spine. When the technician slid her magic wand over my right breast, I thought someone had dropped a river pebble in my screen. There was a big black blob smack dab in the middle of my screen and I knew then that it was cancer. It had to be because nothing else can look as sinister. A week later, we got the official news. At 22 years old with classes to pass and weddings to plan, I had breast cancer. It was triple positive, meaning that it loved estrogen and progesterone and for dessert, it was partial to HER 2.
A week after my diagnosis, I had a bilateral mastectomy. I was my breast surgeon’s youngest patient. The night before my surgery, I wanted to see mastectomy scars. If I was going to have to wear the scars for the rest of my life, I wanted to know what I would see in the mirror. What I found was The SCAR Project. With each picture, I found stoic, resolved women who dared me to think them weak or pitiful because of their scars. These women were above their diagnosis and I took heart seeing their strength, even as my soul cried for all the beauty affected by breast cancer. It helped me through the night, the surgery, and the breast surgeon’s finding: because of lymph node involvement, I was upgraded to Stage 2B.
A few months later, I fell into a deep recess of my former life and couldn’t bear looking at myself without the mirror being entirely fogged up. I emailed David Jay, never daring to hope that he would respond back. I had just gotten involved with the movement to bring the SCAR Project to DC and felt that my contribution would be in the background. I was satisfied knowing that I would help in this way. But David did email me back and the world opened to me again. He asked if I wanted to be photographed. I cried when I thought that anyone would want to take a picture of my scars that I despised even if they meant I was surviving. Here, my poor body was doing all it could to surmount the effects of chemotherapy and I could only see them for what wasn’t there.
When I met David in DC, I could barely breathe from the expectation that he would change his mind because as a 22 year old, I felt I should have had a youthful, unabashed spirit that wasn’t facing a life threatening disease. Had I never been diagnosed, I might have felt like a model off to a photo shoot.
David told me my scars were beautiful. At first, I rejected this thought thinking maybe he couldn’t see how harsh they looked in the light. But as he took picture after picture, I started to realize that my scars were nothing to be ashamed of. Yes, they made me different from other women my age, but they also made me more resolute and strong like all the women who had photographed before me and given me strength the night before my surgery. It is still hard to look at myself sometimes. I would be lying if I said the opposite. But through my picture and my involvement with the DC exhibit, I have made peace with myself and my scars. Because our scars are there to remind us of the times in our lives that are important to remember and they paint a story of not just survival, but living.
Follow Eliza’s Adventures With Cancer aka her blog HERE.
Check out the story the NV Daily did on Eliza HERE.