Archive | August 2012

Cancer Fighting Princess

[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.

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Breast Cancer is NOT a Scarlet Letter

[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

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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.”

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