[When I first saw my friend Sara’s SCAR portrait it immediately rendered me at a loss for words, which is not an easy thing to do. I mean, I may be crazy shy, but I typically have at least 23,587 words on the tip of my tongue at any given moment, all raising their hands like Horshack, screaming out: “Ooh ooh choose me!” However… they all stood still like they were playing the quiet game or something when I saw Sara’s SCAR portrait. I. Love. the Beauty. And the Bold. Which bursts forth from her picture like it’s rolling on the floor laughing out loud, and maybe even peeing a little, IN THE FACE OF CANCER—and—Cerebral Palsy, to boot. That’s how badass Sara B. is. And that’s why I couldn’t wait to finally meet her in person at the recent SCAR Project DC kickoff cocktail party. And that’s why I can’t wait till you get to meet her here as well. And that’s why I’ll just sit down, maybe grab a cup of espresso with a shot of Baileys, and let her hijack the blog today and tell you her SCAR story in her own words. With Sara’s permission, this is a repost from her blog, “Ready, Pink, and Able” which you can check out and follow HERE.]
Guest post by SCAR girl Sara B.
Exhausted. Actually, I’m in the spacebeyond exhausted.
That’s what I feel. I have been worried about this shoot and its implications for 3 weeks. I want to share the experience, and at the same time, keep special moments for my heart alone. I don’t really want to talk about the experience, and have been telling my friends that they have to wait until I’m ready to talk. The only reason that I’m blogging so soon is that I’m afraid that if put off, it’ll never be done.
What can I say about this day? I had a nightmare the night before about breast cancer and mastectomy scars, and then I shook for the longest time, I didn’t think that I would see the end of this day. I kept hoping that David Jaywould call me and cancel. I’m not that strong. Didn’t feel brave –just annoyed, fearful, and worried. I also knew that I wouldn’t back out of it; I see things through to the end. When I make a commitment, I believe in keeping it. It’s just the way I was made…When I’m in, I’m all in.
When David got here I announced, “It’s ME!!” He replied, “I know!!” as he kissed me on my cheek. OK. All ice melted at that point. David did his thing as he looked around, and I just tried not to faint or vomit.
Congratulate me. No fainting or vomiting!! AND you’ll be amazed. Taking off my top was pretty easy. I am NOT kidding. When it was time to take that part of this journey, I was ready. Who knew? Well, David did! He told me repeatedly over the last weeks that it would be fine. He was right. However, it was much more than fine. I was brave and David was patient. He knew how to wait for honesty. He waited for me and fearlessly took the shots. It was a privilege to be part of those moments. That shawl slipped down so many times; I didn’t worry about it. I was completely at ease. I accepted myself.
Breast Cancer is a serious subject. It’s a beast. It stole my breast. I didn’t convey any of those things during the journey that David and I took together. I laughed. Yes, I know. I’m just different. I laughed…and laughed…and laughed some more. I thought about it, and started to panic every so often during the shoot. I thought, “I shouldn’t be laughing. Breast cancer is a monster. Sara, don’t laugh.” Then, I would try to swallow the laughing and look to the camera. It was so unnatural! You can’t be yourself while you’re trying to swallow who you really are. The truth is that while breast cancer is horrible, and I have grieved the loss of my right breast, I don’t live in that place in my heart. The truth, if I’m really honest with myself, is that Sara laughs…she enjoys the freedom of laughter. I really do embrace my faith which tells me that I have been made in the image and likeness of God (Gen 1:26). David, in his wisdom, just said, “It’s OK to laugh, go ahead.” Those moments, when David gave me permission to be happy…honestly joyful, those were my favorite.
If you’ve read my blog before, you remember that I’ve said that I never thought I would reveal myself in an intimate way to any man outside my spouse (if I ever marry). I just know instinctively that I can only be vulnerable like that if I’m in the presence of love. That is still true. The shoot didn’t change that at all. You see, when I looked at David’s face, I saw love reflected back to me. Now, make no mistake here. There are many different shades of love. I’m not in love with David nor he with me. (Although, I can certainly understand why women would fall for him.) The love that I saw in his face was his humanity truly connecting with mine. I know I didn’t imagine it. It’s probably one of the most wonderful times of my life. It brought tears to my eyes later. I had been loved, and not in any way that I expected. I never thought that I would meet a fashion photographer, let alone that I would find love in his face. Yet, it really happened. In fact, the love in that room helped me survive the moments in between the shots, when I needed to wait for my muscles to relax. I couldn’t stay in the same position for very long, and I just begged to be allowed to move. Cerebral Palsy is betrayal of the highest order. My body’s movements and spasms are often not voluntary, and pain is a frequent albeit unwanted guest.
The only troubling part of the afternoon happened when we finished. I sighed and exclaimed,”We’re done, and I’m never doing that again!” I was wholly unprepared for David’s response. He explained that if he didn’t get what he wanted in the shots we had, then we would shoot again. Umm…David…I never said that I would agree to do this again. My heart sank through the spokes of my wheels. I was convinced that he must not have gotten what he needed. I had let him down. I had let all people with disabilities down–never mind myself and the two friends who were present. Talk about pressure. Let’s be real. We had an incredibly talented photographer and we had me. If one of us had ruined the shoot, who would you bet did it?
OK. so it’s all moot now. Just look at his photo. Look at the abandon with which I threw back my head. Breast cancer took my breast, and it very well may take my life someday. It will never own me. I am free. Thank you, David, for being my witness.
Tune in to (or TIVO) the Emmy’s this Saturday to see Patricia Zagarella’s Baring It All take home and Emmy for her groundbreaking documentary about The SCAR Project!
In the last few years of Jolene’s life, she was awed by the gratitude of these flowers not realizing it was they whose soil was most enriched by all she taught them with her honesty and appreciation for even the minutiae of life.
Her wit and charm endeared even the weeds to her, but she would not succumb to their negative forces. She continued reaching for the sky and striving to make something beautiful out of the storm that became a hurricane; sometimes subsiding, but never completely diminishing. She opened wide her leaves and petals to share the remnants of the storms’ damages with the world as part of The Scar Project. She wanted the spotlight of the world to shine down on this garden and see that not one ribbon grew in the garden. It was a garden where only flowers grew who had been changed by the blades of the gardening sheers and sometimes even pesticides that would cause petals to shed from the stamen. In this section of the garden, every flower was merely a seedling and Jolene was one of the youngest to sprout here. In her own words, she felt it was the place where her voice would still be heard after she was gone.
[After Jolene’s Mom, Denise VonMillanich, and Flat Jolene’s special guest appearances at the SCAR Project LA cocktail party kick-off fundraiser last month, quite a few people asked about Jolene’s S.C.A.R. story. Her recent passing in October reminded us all that the absolute reality of cancer is that not everyone survives. It is a horrid, hateful disease that does not care if you are only 17 years old, like Jolene was, when she was first diagnosed with breast cancer. It does not care if you are only twenty-freaking-five when you lay down your pink boxing gloves and go to your rest in peace after kicking cancer’s ass for 9 years, like Jolene did. Cancer does not give a rip if it’s 2 weeks before your 26th birthday and you have plane tickets to NYC to The SCAR Project exhibition, where your portrait is hanging, and your SCAR sisters are all waiting to hang with you, as was the case with Jolene’s passing. Cancer does not care. But we do. And we remember Jolene. We will always remember and love you, beautiful Jolene.]
by Jolene Von Millanvich
So, a lot of people have asked me to share my story about my fight with cancer. I decided to write it here so anyone and everyone can read it. Just to warn you, it is long, but here it goes.
When I was 17, I felt my first lump in my right breast. I ignored it for months until I finally went in for my annual exam and the nurse practitioner felt it. She immediately freaked out and referred me to a surgeon who ordered an ultrasound. I was like . . . “What is this bitch getting me into? I’m TOO young for this to be cancer!”
I went and got the ultrasound and we found out that it was solid and not a cyst like everyone thought. After that, I went to the surgeon and he gave me the option to either have a biopsy or get it removed. I decided to get it removed. So in July of 2003, I had my first lumpectomy. A few weeks went by and I didn’t hear anything about my results so we figured that no news was good news. I started college to become a medical assistant and after my first day of school, I came home to find my surgeon sitting on my couch with my family! OMG, talk about house calls! He explained to me that my results took so long to come back because they had to send the pathology to Stanford since no one at the local hospital knew what it was. He then told me my diagnosis was a Phyllodes tumor. He said that before me, he had never even heard of it. It was borderline malignant and he didn’t get clean margins. His understanding from what he read about it was that it would be best to do a single mastectomy followed by radiation, then reconstruction.
Being a 17 year old girl, my boobs were my best friends! I couldn’t imagine walking around with only one boob. What an idiot! If only I knew back then what I know now!! The surgeon decided to send me to a specialist at the UC Davis Cancer Center who had seen Phyllodes before. The specialist advised that a mastectomy wasn’t needed and we’d take the wait and see approach.
In October of 2003, I had my second lumpectomy to get clear margins and remove the second borderline malignant Phyllodes tumor from the right breast. After that, we did follow up visits every 3 months for a while. Eventually, it went to every 6 months and I was clear for about a year and a half. In February of 2005, when I was 19, I had my third lumpectomy for another borderline Phyllodes tumor. My doctor still didn’t pursue the mastectomy because he felt that it wasn’t going to turn malignant and wanted to preserve my breasts due to my young age.
June of 2008 rolled around and my doctor retired and my insurance changed, so I had to find a different Surgical Oncologist. Of course, I slacked on that until I felt a lump in my left breast in October of 2008. I found a really great surgeon and he did a lumpectomy that December. Immediately after that lumpectomy, I started to feel a lump in my right breast. It was pretty big by the time I got into to see my surgeon and at that time we decided that I was done getting lumpectomies every few years and it was time to do the double mastectomy. My new surgeon couldn’t get me scheduled until February of 2009 for the double mastectomy. By that time, my tumor was 11CM; the size of a softball. I had grown out of my B-Cup bra and even out of a C-Cup bra. I thought my boob was going to explode! It was so painful!! The pathology report from my mastectomy showed that the tumor in my right breast was, in fact, now a malignant Phyllodes tumor. My left breast had more Phyllodes tumors and DCIS.
This is where the fun began! A PET scan was ordered and revealed hot spots in my right lung, right shoulder, a lymph node in my right armpit, and a lymph node in my right groin. My oncologist ordered a bone biopsy in my right shoulder because that was the easiest one to biopsy. That came back as a rare benign lesion. Then we decided to biopsy the lymph node in my right groin. Unfortunately, they didn’t get a good enough sample. The biopsy was inconclusive. My oncologist decided that since the bone biopsy was negative for cancer, the other spots weren’t cancer, either. What a mistake. I went back to work and went on with my normal life. About 4 months later, I had a repeat PET scan. It showed the spots were getting bigger. The lymph node biopsy was repeated, and what do you know, it came back positive for Phyllodes. My oncologist diagnosed me as Stage IV and referred me to a Sarcoma specialist at UCSF because he had never seen this kind of cancer.
I started chemo in October of 2009. I did Doxorubucin (aka Adriamycin, the Red Devil) and Ifosamide and had to be admitted to the hospital at UCSF for 6 days for each treatment. I completed 3 rounds of this protocol and had another PET scan. It showed that the cancer was unresponsive. So, in Febuary of 2010, I started Taxotere combined with another chemo that I can’t remember the name of right now. LOL! After 3 rounds of that protocol, I had a PET scan and it revealed it was working!! Yay!! My oncologist and I decided to do 3 more rounds. After completing the first round of this three, I noticed the right side of my lips were really, really numb. My local oncologist ordered a CT of my brain which came back normal.
About 3 weeks later, I noticed what I thought was an abscess in my mouth where I had 2 molars removed the year before. I went to the dentist and got x-rays done and they said it wasn’t an abscess but a cyst or a tumor and it was sitting on my nerve in my jaw which was causing the numbness in my lips. It started getting bigger and bigger and was really starting to get painful. I was, FINALLY, referred to an ENT oncologist at UCSF and he did a biopsy. The biopsy revealed a sarcoma. I, of course, assumed it was another Phyllodes. I would find out at a later date that I was wrong. On June 24, 2010, I had the right side of my jaw removed and reconstructed with my Fibula and a steel rod. I was in surgery for 15 hours and the ICU for 9 days, but I only remember 3 of them. LOL! All together, I was in the hospital for 2 weeks. The tumor measured 7 cm and grew that big in only 7 weeks!!
In August, I learned that the tumor was a whole different kind of sarcoma. So I’ve had 3 different kinds of cancer and they’re planning on testing me for Li-Fraumeni Syndrome next month. It’s a genetic disorder that increases your chances of getting different kinds of cancers and, usually, affects kids and young adults. I started a clinical trial at UCSF the beginning of this month. It’s a mixture of Avastin, Taxol, and a brand new drug that doesn’t even have a name yet. I have to go to San Francisco every week for eight weeks. Then we’ll do another PET scan. I’m praying that this works!! Third time’s a charm, right?!? I can’t wait to just be done with this and get on with my life cancer free!!
[Addendum: Jolene’s chondrosarcoma in her jaw recurred before the end of 2010. About a month later, she was advised the genetic testing for Li Fraumeni (genetic syndrome) was positive and she underwent another grueling 18 hour surgery in April 2011 almost identical to the surgery she had in June of 2010. More of Jolene’s jaw was taken and rebuilt. A couple of months after that jaw surgery, it was determined that Jolene had two chondrosarcoma tumors growing in her sinus cavity/brain. Jolene underwent surgery to debulk those tumors and relieve some of her pain. After that surgery, Jolene (with the support of her family) decided to enter hospice care and live a life of quality over quantity. Jolene spent the last three months of her life making memories with her family and friends.]