October 09, 2018 12 Comments

The only thing I see when I look at these pictures, are scars. My husband and the Malicious Women tell me I am crazy. They tell me I am not seeing what other people see. I see scars. I scheduled this photo shoot in a Wonder Woman outfit to honor the battles my body has fought, and continues to fight. To try and learn to love the scars, the stretch marks, and the skin that keeps trying to kill me.

Before the shoot, I randomly selected this quote from the box. It was perfect.

 This shoot was terrifying and empowering for me. Sharing the pictures online is petrifying. I’ve never done anything like this. I’ve spent so many years hiding my scars, to see them up close, in a photograph…almost too much. I cried. I don’t often cry. It’s an odd feeling to feel brave and vulnerable at the same time. I am embracing my inner warrior as I share my story with you. The story of why I walk for breast health.

 Jezebel Vonzephyr - Getting Ready

In 2002, I was diagnosed with Stage 3 Malignant Melanoma.  I was 7 months pregnant. My medical team decided it was safer to deliver James premature, with underdeveloped lungs and get me into surgery immediately, rather than wait. The cancer was spreading fast. The surgeons cut into me, removing half my labia and a massive amount of surrounding tissue and many, MANY lymph nodes. Who gets cancer on their lady bits? Me. I fought hard, right alongside my baby, who was in intensive care because of cancer. My cancer. He had to fight because I had to fight. It was the definition of unfair. How could he start his life this way? Watching him try and breathe, with both of us attached to hoses and drains. So much fear and guilt. We made it through, my husband and family4right by both our sides. James is now 16, and 6’3”. He is a ball player and strong as steel. I am photographed and mapped annually, standing in front of a white wall, with someone mapping and photographing every inch of my skin, inside and out. It is humiliating every year. The cancer has returned twice since 2002. Each time, more scars. Each time, a victory.

I can't tell you how much I hated people referring to my cancer as a journey....ugh...

In 2014, my breasts had become hard and lumpy and painful to the touch. Imaging showed numerous large, grape-like cluster cysts, in both breasts. My surgeon said it was very rare to see such a severe case of cystic breast disease. We tried draining the cysts multiple times for over a year. And by draining, I mean sticking a long needle into each breast multiple times to drain the fluid out of each cyst. I cannot describe how painful it was and every time we drained one, the cyst became denser and more difficult to puncture the next time. I was diagnosed with an aggressive form of Poly Fibro Cystic Breast Disease. There was no cure and the cysts were spreading to my armpits and lower chest area. The only option was a double mastectomy. More Scars.

Embracing the scars...

October is a very difficult month for me. There is Pink everywhere. Pink for breast cancer. During my year and a half recovery and breast reconstruction I was constantly reminded how lucky I was that I didn’t have cancer or having someone refer to my double mastectomy as “Preventive.”

“Preventive for what?” I would ask. There was nothing preventive about the hell I endured. The cysts were spreading and I had no other option. The 12 surgeries, the rejected reconstructions, the pain. I went for a year without breasts to try and strengthen the surrounding tissues. I had expanders and drain tubes and all the while, people telling me my pain was ‘less-than’ because it wasn’t cancer. "I was lucky" they would say. I didn’t feel lucky. Every morning, I saw the torn up flesh and the wide scars and I remember wishing they would find a tiny bit of cancer just so my pain would be taken seriously. I endured the same emotional trauma of having my breasts cut off, but didn’t feel worthy of my breast-grief because I was supposed to be feeling gratitude I didn’t have breast cancer. I wanted to wear pink. I wanted to find a place I belonged. I tried support groups but trying to explain Poly Fibro Cystic Breast Disease became exhausting. And in one particular group- I was told, “This is a group for people who have had cancer- you can’t relate to what they have gone through.”

Stretch Marks & Scar Warrior

I am a cancer survivor. I have already survived and continue to kick the ass of a really aggressive cancer, and even that is minimized. “Oh, was it a mole? I had a mole removed, too,” people would say. 

No, MotherF’r, it was STAGE 3 malignant melanoma that was rapidly spreading. The doctors took my baby out of my stomach at 7 ½ months, put him in the neo-natal unit and wheeled me off to surgery. Treatment began the next day.

The point of my rant is that I feel it is important to be clear about the fact that I did not have Breast Cancer. I have had cancer and I kicked its ass. My ribbon color is black. BLACK! Who’s brilliant idea was it to make a cancer ribbon black? The color of death. I want to wear pink! I want to talk about my story without having to explain that my double mastectomy was not preventative. To be honest, sometimes I just say “yeah” when people ask if I had cancer. I know they are assuming breast cancer, but I am tired of justifying my cancer experience.  

I want to bring a voice to breast disease as we continue to focus on breast health. I walk for a cure for all diseases of the breast, for hope for the future, and to honor my body with all its scars. I honor my body, my stretch marks, my misshaped & scarred breasts. I am a Wonder Woman. We all are…in our own way.

Disclaimer: I know that Breast Cancer and EVERY cancer is serious, and please believe me that I know I was depressed when I was wishing the doctors would find cancer again, just so I could belong somewhere. That is not rational or logical thinking.  Please also know that ANYONE battling any type of cancer is a warrior and I in no way would ever want to trivialize their experience. To those that are no longer with us; my love goes out to the families that were shattered by cancer. My sincerest wish is that we find a cure for all cancer and continue to talk about breast health.

Photo Credit: My Sincerest appreciation to Sarah James Williams, owner and photographer of Jezabel Von Zepher Photography in Bothell, WA. Thank you for helping me see the beauty of my scars, the strength I didn’t know I had and the well-timed shot of whiskey I didn’t know I needed.  

https://www.jezebelvonzephyr.com/

 

 

 

 


12 Responses

jeanette
jeanette

October 17, 2018

Hi Lacie, stumbled on your page today and just want to say.. I AM a BC survivor,(Twice, two time loser here!) but that doesn’t make me special, or anything else, we are ALL survivors of something, You is Strong, You is Beautiful, and our scars are roadmaps of the life we’ve lived. And as for the Pink ribbon? PULEESE nothing pink and pretty about all these surgeries and scars of our “lady parts” I’ll take your black ribbon, its more badass anyway. Bless you and keep on going, it all gets better, some days maybe not, but hey, its life, no one gets out alive anyway, we just have cooler stories!

Cindy Lampinen
Cindy Lampinen

October 13, 2018

Lacie,
I know this might sound cheesy or wrong. But I have to tell you, I am so proud of you! I love reading all the things you’ve posted. I am so happy for you that you have found the support you deserve. I can tell that having people understand what you’ve been through and for you to be able to share it has brought you so much joy. You deserve everything that is happening for you. You are so amazing, beautiful, strong, inspiring, and a warrior. Your picture is beautiful! I pray that someday you can see what we all see. An amazing beautiful woman! I love you so much!

Jules Moyna
Jules Moyna

October 12, 2018

I don’t have cancer (my step mom does…again) but, I am a sepsis survivor. Had pneumonia in January and ended up in ICU in cardiac arrest, incubated me and induced a coma that I got to sleep for 28 days…don’t remember anything but couldn’t figure out why I was always floating around our hospital. The aftermath of being intubated left three scabs/now scars on and around my lips and mouth. I had a biopsy done today right in the middle of my bottom lip and now to add to what looks like herpes or a port wine stain is a hole covered by three stitches. I lost so much weight that I look about 79 years old. I hate pictures of me and there is no filter I can find to take away any of the wrinkles, looking at your pics and reading your story is def inspiring and I I am going to book a shoot of my face, the way it is…bruised and scarred as a part of my “journey”. Wtf is it called a journey. It’s not fun. Learning to walk and learning my name at 54 still messes with my head but the worst part of this is that my kids were in my face every time i woke up. No child should have to see their mom pretty much dead and not knowing if she will wake up! I never saw a light so I know God doesn’t want me and we, the devil couldn’t handle me. We all have different paths that lead to different destinations, some will continue as some will reach the end. However they end, I wish you peace, love, comfort and support I had no idea that this company existed but, I believe my search wasn’t random…fate brings women together and after reading your story, I am inspired and will wear my scar proudly to say Fuck sepsis, I am winning! PS, I can’t wait to get the candles, I ordered on amazon because it was so hilarious and the last one, now I have found the source and will be back. Love on ya…jules

Katie Olney
Katie Olney

October 10, 2018

You continue to be an inspiration to so many! Thank you & bless you for all you do!

Tina Richardson
Tina Richardson

October 10, 2018

I love you even more now!

Leslie
Leslie

October 10, 2018

Lacie,
Wouldn’t it be great if one of our super powers could be to see ourselves as the people that care about us do?
You are an amazing person. Strong, beautiful inside and out and you appear to me at least, unafraid. The bravery you showed in sharing this is post proves that. Keep on with your bad ass self girlie.

Dana
Dana

October 10, 2018

Wow, just WOW! I had no idea you have gone through all of this. More of the story of YOU that just adds to the tribute to the warrior in you! I’m so in awe of you and how you spread the word(s) of your story to help others through your business. Keep up the great work. I hope it is cathartic for you. And, I hope you know how much your tribe loves you and supports you.

Elaine
Elaine

October 10, 2018

I am sorry you had to go thru all that. You a strong, brave woman and you are amazing. Keep fighting! I got cancer on lady bits too. Caught it really early, thank god, but I had to biopsy it every year for years to make sure it doesn’t come back. It is frightening. Mad respect and love!

Sara M
Sara M

October 10, 2018

I admire you, and this is so sad that you had to feel this way. You are a Wonder woman and it hurts me to see that people are such bullies questioning a disease. You have come so far and the strength in your son shows what is in you. Keep up the good work showing others the way. ♥️♥️ #cancersucks #diseasesucks

Melissa Devereaux Beasley
Melissa Devereaux Beasley

October 10, 2018

You are an extraordinary woman! Just WOW!

Lori Gray
Lori Gray

October 09, 2018

Lacie!
I don’t know where to begin! I just want to wrap my arms around you! Your such a beautiful soul! Your so beautiful inside and out! You give so many people men and women hope! Your such a role model!! The things you have done with your life make me push through mine! Your story keeps giving me hope and inspires me to keep pushing. To be a powerful independent woman like my mother raised me! You built this sassy yet unique tribe. There is nothing like this Malicious Tribe! Your story that I just read makes me get goosebumps because I couldn’t imagine the pain, the heartache the struggle. Your baby James! I’m so freaking proud of who you are! You have fought so many battles that people only see on tv! You are a warrior, a survivor and such a beautiful Wonder Woman!! You do so much good every single day of your life. Thank you for letting a person like me hear some of your story! You have inspired me since I read the story of making the candle company! You have changed so many peoples lives. Don’t Stop Believin ever!
Lori Christine Gray

charles carroll
charles carroll

October 09, 2018

I am so proud of you. YOU are a Wonder Woman!

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