[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.
[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.