Tag Archive | double mastectomy

How Many Likes?

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[Maybe you saw the above SCAR Project image when it went viral on FB in October of 2012. The post accompanying the picture asked: “How Many Likes? For this courageous breast cancer survivor?” Maybe you even liked it? Maybe you didn’t know it was one of David Jay’s SCAR Project Portraits? (The post didn’t mention him, The SCAR Project, or the woman’s name.) Maybe you wondered if the girl in that picture knew she got millions of Likes? (She did know, btw.) But maybe mostly, you wondered about the young woman in the photo—the 1000 words behind her picture. Today’s special guest post is by the courageous breast cancer survivor in that picture, which has been Liked and Shared and Commented on, around the world and back. If you happen to be catch one of the upcoming SCAR Project Exhibitions in Toronto or Los Angeles, maybe you’ll catch the girl in the picture, standing next to hers.]

Guest Post by SCAR girl Candice M.

Dog food, dog food… which should I get? Too many choices… Ring tone called Island Breeze sounds off in my pocket. I can’t even hear it, but because it’s called Island Breeze, I should have been transported to an Island. This is just my opinion; though my opinions never seems to take hold in ways I want them to. Technology. Hearing people always ask me if I set my phone on vibrate. I’m surprised they don’t know the answer to that so I say, “Yes of course then I put it right… down… “. At least I make them laugh. I see it’s a local number so I know it’s not a telemarketing call. Shoot, I hope it’s not the doctor. It’s too soon, he’s supposed to call, like… never. I fiddle with my hearing aid, am I gonna hear him? Oh I hear him alright. Well not the first time but I didn’t have to. He wasn’t going to call if there was nothing wrong. Silly me I thought he was going to make an appointment and meet me in the office like on T.V. Instead, he tells me over the phone, point-blank. Was that a 9 millimeter? Nope, AK-47. And there’s no dramatic fade in or fade out or music, not the whole town running in to see what was the matter, nothing just a big fat row of dog food at the pet store. Oh, Kirstie Alley if we could just go to a place where Nobody Knows My Name…

I scream. I can’t even remember what day that was. It was my daughter’s birthday, I think, or the day before. Oh fun. I also got pulled over, screaming all the way home, illegally calling my mother at the same time. Big black cop doesn’t know what to do with a screaming white girl in the middle of the ghetto but he does manage to let me know I ran a stop sign. I’m sure he loved my response, “I have CANCER what am I going to do??!?” Dumb look on his face…

“well… m’am you still can’t run a stop sign.”

He fiddles, he’s nervous, he doesn’t know what to do. Awkwardly, he slowly backs away from my crazy screaming and crying, and decided a ticket wasn’t what I needed at that time. Good for him, two people survived that day, not just one. I got what I call two chemo tickets in the following two months anyways. My head wasn’t on the road. How could I? My head was… am I going to be alive, will my child have a mother? Its amazing that I survived not just cancer but also my own driving. Yes, unfortunately for you, I still have my license. Yes it’s safe to get in the car with me, just not on days I’m diagnosed with cancer or in a chemo fog, ha!

I have angels watching over the car so don’t worry, come join me for a ride because this is one helluva rollercoaster ride. Stage III. Really?! Ok, I acted surprised, I tried not to be surprised, but I really was surprised anyways. Damned thing was supposed to be a CYST, not cancer!

The part of me that wasn’t suprised that it was so late-staged was because I had been trying to find out what was wrong with Ms. Leftyboobie since I was a kid.

Yes, I said that right, a kid… I told a doctor when I was 17 my breast didn’t feel right. Age 21, I told a different doctor that I was “leaking” fluids. Age 26, I went for a fibrocystic breast study, and no one saw a problem with Ms. Leftyboobie, really?! Then Ms. Lefty B decided to let herself loose at age 29, which led to a 6cm cancer retrieval at age 30 because I guess I was “old enough”. I don’t think I finished blowing out the candles.

Young ladies, you can and you are old enough for breast cancer, no matter what anyone tells you. I found a doctor who saved my life. He said, “I know you aren’t due for a check-up but I’m gonna check ya anyways.” I roll my eyes, oh puhleeeeze. He gets to second base, faster than anyone I have ever met… well, mostly everyone. *wink* I let him find it, I think, go, have at it, thinking he won’t do anything anways, I don’t say a word… instead, he freaks out and says, “You gotta get that checked!” I just glance at him, and with an air of boredom, I drawl almost a whine and ask for the millionth time, “Please, I want a biopsyyyyy.” He says, “Ok.” I say, “Did you just say ok?!” Doth mine hearing aid and lip reading fail me?” (I didn’t actually say that last part). He hands me the slip, I run off to a whirlwind of appointments. It’s just in the nick of time…

Because, here I am five years later celebrating my life and watching my daughter blossom into this gorgeous young lady (and no I’m not one of those parents that just says my kid is the cutest because my kid actually IS the cutest. I have evidence to back that up AND testimonials*.) I have to say going through all that and losing my breasts was devastating. But it taught me how to love myself better, to see that I’m still beautiful. I can prove it via The Scar Project. The photo you see is the very first time I showed ANYONE my scars. I had a little birdie, my breastie bestie, Jolene, who whispered to me that I could do it, and she stood by my side.

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I miss her, and losing her still hurts me something good, but I would never trade meeting, loving, and knowing my Pink sisters, for anything.

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I prefer to think that Jolene was reborn into this really amazing place with tons of loving people, cheese and crackers galore. I’ve met some really incredible people on this journey. It made my little deaf-brokenboobie life fuller, and worth surviving for. It opened up my eyes to a whole world that many people don’t understand or choose to see. I actually had people say to me, “I wish I had cancer then everyone would pay attention to me” and equally as shocking comments/statments. Also, I didn’t really get attention, instead, I was told by people, to get over it. Regardless, I would never want to feel so sick or so scared again, for any kind of attention.

Breast cancer isn’t a pink ribbon. It’s losing yourself, becoming so sick that your family gets shattered to pieces with you, rediscovering yourself, finding your words, discovering that hair does grow back even if curly and unruly, it does grow back. I ask myself every day could I do that again? I watch my friends doing it. I don’t know. It’s really that hard, so while you are waving a pink ribbon, instead go and really get involved. I had little to no support. Real pink ribbon support should mean help with cleaning, making meals, taking the dogs out, or helping me get out of bed on the days I was too weak to pull myself up, not just a piece of fabric or a specific color or logo. Donating money is nice, make sure you know where it’s going and what they are doing with it. But know what’s really fantastic? Food for my kid, and clean clothes too. Even more wonderful?? Someone to sit next to me for a little while so I’m not so scared.

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I look over at my daughter who is sitting and reading quietly, yeah I definitely could do it again. She’s my reason for everything. I shove soy and vegatables at her. Thankfully, she welcomes the healthy food jumble that I foist upon her. She’s a beautiful soul, and a fighter too, but this is one fight I do not want her to face, and through The Scar Project, I am hoping to make that difference for her, not just to be my own voice, but to be hers too. I’m not who I was before, but I am still me (just waaaay better and sexier), and this is my new normal. I am not breast cancer and breast cancer doesn’t define me. Oh and one more thing, reconstruction is a choice. This whole “I love boobies” campaign isn’t the right path. Can’t we all say, “I love women”? That’s what we are trying to save here, right? I will end this with one of my favorite quotes from one of my scar project sisters, Keiko:

“I used to be sad about the scars that run across my chest; now I feel they are a roadmap on my journey of survival.”

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*For the record, Candice is in no way exaggerating the ridiculous cuteness of her daughter. I met Sky at a SCAR LA fundraiser and fell immediately head over heels over this enchanting child. Holy crap, we all did. It couldn’t. be helped. She’s that stinking cute.

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Cutest photo bomber EVER!

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Gravity

[When I stood before my guest blogger ‘s SCAR portrait at the first SCAR Project Exhibition in NYC in 2010, it was the first time I really faced another  woman whose [Surviving Cancer.] [Absolute Reality.]  looked like mine. I knew so little about breast cancer when I was diagnosed in 2008, that I didn’t  know that no  reconstruction was even an option any woman ever opted for. The one woman I knew who’d had a double mastectomy, did it prophylactically with immediate reconstruction. In my case there weren’t really options. The best course of action was to wait until after surgery and chemo, to evaluate the reconstruction question: 2B or not 2B?   When I  met Toni at the Cincinnati Exhibition I produced in 2011,  she was still the only other woman I knew who had been there, done that, had to buy a flat new t-shirt like me. I was eager to learn her story and to share it here.  Now, especially in light of the recent Facebook controversy over SCAR images, and of upcoming exhibition news, I’ve asked my flat and fabulous SCAR sister Toni G. to share her SCAR story. Here is the first of two parts.]

Toni G

Guest Post by SCAR girl Toni G.

I was sitting in a tent at Zion National Park when I got the news. The voice of the surgeon who had biopsied a mass in my breast the week before came through my cell phone: “We need to talk”. My heart sank.

I had breast cancer. I was 28 years old.

I’d already planned out my vacation to Utah for the spring of 2007 to celebrate passing the doctoral candidacy exam—a feat that would allow me to continue pursuing my Ph.D. in Molecular Biology and Biochemistry. But  experiments didn’t cooperate, and I’d had to postpone the exam and take my “celebratory” vacation before I even answered one question.

And now this woman was on the phone saying words horribly foreign to me. ER+/PR-/Her2-. Grade 2. BRCA1/2-. Two IDC tumors measuring 3 and 5 cm.

More unfamiliar terms followed as she proceeded to tell me the course of treatment. I sat in silence while she described, in what seemed like one breath, oncologists, mastectomy, chemotherapy. When she spoke the word radiation I finally lost it.

My space-time continuum had just been warped by the gravity of cancer.

She wanted me to see an oncologist that day, but I was 1500 miles from home and a week away from my return flight. I told her I couldn’t that day. Or the next few. I had rented canyoneering equipment for the day and had miles of hiking to look forward to. I would be home in a week. I didn’t call my family. I couldn’t bear to tell them the heaviest news of my life over the phone.

The one phone call I did make was to the chair of my committee. My candidacy exam would have to be further postponed. It turns out, indefinitely—but that’s another blog.

The months following diagnosis were surreal. I’d become so used to people telling me that 20-somethings don’t get breast cancer that I found it hard to believe I actually did.

When I was 20, I found a lump in my breast. My surgeon insisted it was a cyst. No tests? No biopsies? Nope. When the pathology came back benign, I sensed an “I told you so.” He told me that even if I discovered more cysts in the future, I wouldn’t have to have them removed. “They’re normal,” he said.

“They’re normal,” I thought eight years later as I stood naked in front of the mirror slowly tilting my head and squinting. My left nipple looked odd and had gone flat. My gynecologist thought the scar tissue from my cyst removal was causing it. She never mentioned the words breast cancer.

Over the next few months I began to feel a mass in the same breast. I called my gynecologist’s office again and was told to call back in six months to follow up. I convinced myself it was just another one of those normal cysts. So I didn’t worry—for seven long months.
By then, the two masses in my breast were causing sharp shooting pains across my chest. The (finally) worried gynecologist ordered a biopsy.

And then I was in Utah, sitting in a tent…

When I did finally go home and called a family meeting, Dad was giddy. “You’re getting married!?” No, Dad. “You’re having a baby!?” No, that’s not it either. It made the truth more crushing.

My oncologist started me on chemotherapy immediately because the tumors were so large. He ordered a CT scan that came back with abnormal spots in my femur and four places in my spine. After a follow up PET-CT scan, I received a second blow. The spots were metastasized breast cancer.

I was now stage four.

I wasn’t concerned at first. My ignorance of metastatic breast cancer shielded me. But after a week of reading through scientific literature, I found myself shutting my laptop every night in tears, unable to handle any more statistics. Based on my research, I knew I only had a 25 percent chance of being alive in five years.

My oncologist said nothing had changed—not our treatment strategy or my life expectancy. I knew then I had to change oncologists. My life depended on it.

I found my second oncologist at MD Anderson. She cited current literature and was willing to be as aggressive as I wanted with my treatments. She understood my drive to do absolutely everything I could to get rid of the beast that was trying to pull me down.

“Absolutely everything” turned out to be the hardest experiment of my life. Seven months of chemotherapy, a bilateral mastectomy, a clinical trial with high dose chemotherapy and stem cell transplant, and six weeks of skin-scorching radiation to top it off.

It worked. I was declared to have “no evidence of disease”!

Just one week after I finished my treatment, I hiked to the top of the Continental Divide in Colorado. After hours of plodding through the snow and a chance encounter with a majestic mountain goat, I found myself sitting at the top of the mountain. Bald and burned and brave. I had defied gravity. I had defied cancer!

Toni Hiking

[All this defying of cancer and, most likely, more gravity as well, will be continued in Part 2 of Toni’s SCAR story, in which she considers the geography of cancer.]