Archive | June 2012
June 29, 2012  

Born to Laugh

[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.

Photo courtesy of Colleen Roche

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.

“I was born to laugh. I learned to laugh through my tears.”
-lyrics from “Born” by Over the Rhine.
Check out a link to the song HERE.

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.

Sara with SCAR photographer David Jay at the recent SCAR Project DC kickoff cocktail party (photo courtesy of Koryn Hutchison)

“Breast cancer can kiss my…gorgeous, full laugh! So there.”
-Words to live by, by our very own Sara B. aka the silliest coconut EVER

June 19, 2012  

“Baring It All”, The SCAR Project Documentary by Patty Zagarella Wins an Emmy Award!

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!

Bravo to Style Network’s Taylor Hennessy, “Baring It All” Co-producers Nicola Bates and Patty Zagarella (also director and filmmaker), and SCAR Project Photographer David Jay for the win!

“Baring It All” follows fashion photographer David Jay, into the worlds of four young breast cancer survivors, exploring their journeys and being photographed for the SCAR Project. “Baring It All” portrays what: [Surviving Cancer. Absolute Reality.] Is really all about, for them (and for the more than 10,000 young women like them, who are diagnosed each year).
“Baring It All” uncovers what’s beneath the pink ribbons. To view trailers for Baring It All click here and here.

In the rolling out of the red carpet for Saturday night’s Emmy’s, I interviewed “Baring It All” filmmaker Patricia Zagarella. So without further ado, how about some lights, camera…and action (cue up the first question, enter Patricia Zagarella for the answer parts):
Q: First of all, congrats and namaste on the Emmy, Patty! How cool is it to win an Emmy for a passion project like The SCAR Project?! 
A: This is the most incredible honor BUT the award really belongs to all the courageous young women who participated and to David Jay.
Q: How did you find out about The SCAR Project?
A: David Jay and I have a mutual friend, who was visiting NY from Australia. She randomly bumped into David while on her visit and he told her about the Scar Project. She then sent me a link and my co-producer, Nicola and I, were blown away by the photographs – the beauty and the pain, every image and every woman’s eyes screamed a different story we wanted to learn more.
Q: What inspired you to start filming the documentary?
A: When I first saw the SCAR Project I was captivated by the raw reality conveyed by his photos. Striking and beautiful, yet confronting and almost brutal, they pushed me to a place I normally contentedly avoided. I was both shocked and saddened, but drawn to the images like a magnet. Despite that the photos spoke volumes, I had a barrage of questions screaming in my head, not only about the young women in the photographs but also about the photographer: Who was he? Why was a successful fashion and beauty photographer photographing young breast cancer survivors? Why did he embark on this journey and what motivates him to continue?
Fascinated, I reached out to David Jay – who reached back with enthusiasm and warmth. I then met a genuinely kind and caring man, whose world had been turned upside down when confronted by a close friend’s body after a mastectomy. He told me that he dealt with it the only way he knew how, by taking her picture. And the rest is history.
Q: Can you describe the process, and the emotions of filming such painful images? (ones that most breast cancer patients haven’t seen before they have a mastectomy–hopefully The SCAR Project will change that.)
A: We were an all female team during the photo shoot sessions, our goal was to be unobtrusive and document the event, what we experienced was a palpable transformation taking place before us. Women would come to the door broken and nervous and by the time they left, they had a renewed sense of pride, hope and strength. Every single woman exuded beauty that came from her resolve and attitude, which David captured perfectly.
It was a very special experience, albeit a tough one, being able to capture this transformation, to be able to share in the anguish, the pain, the tears and the laughter.
Q: What were some of the hi-los of filming this project? What surprised you most about filming “Baring It All”?
A: Meeting and spending time with these amazing, strong young women has been an incredible high. I have been touched in a profound way by all the women we met, and I’ve learned so much from them – celebrate life and live in the moment. I remind myself of that daily.
The lows have obviously come when confronted with beautiful young girls struggling to beat this horrible disease.
What surprised me most was the enlightened attitude of such young women and their strength in the face of their mortality.
Q: How did you get into filming?
A: I started working in TV & film in Australia after graduating from University. My first job was working at a TV station and it just went from there.
Q: What do you consider your particular calling in the film industry to be?
A: I enjoy producing, finding compelling stories and character, and then finding the right team to execute that story. I really love meeting people and learning about them, and under the pretense of filmmaking I get to ask lots of questions most people are afraid to.
Q: What other film work have you done?
A: I started working in narrative features, but then about 7 years ago I was presented with the opportunity to co-produce a documentary, and from that point on I was hooked. I loved telling real stories by real people. Who needs a script, real life is far more compelling, heart-warming, and heartbreaking.
Q: The doc was originally titled “Don’t look away”? How did it go from there to “Baring It All?”
A: The doc was originally titled “Don’t Look Away”, a title Nicola my co-producer came up with. We decided on that title early on because people’s initial reaction at hearing about the subject and photos was to look away. The entire message and point of the project was to remove the stigma and normalize something that so many women undergo but no one ever sees or talks about. We wanted people to look at the photos, look at the women, at the scars, and at their eyes. The name was changed when the Style Network came on board as they felt that “Don’t Look Away” didn’t adequately describe what the film was about. After much back and forth, we settled on “Baring It All” as the new title.
Q: How did the Style Network come on board with the documentary?
A: Two great women, Beth and Andrea from Remarkable Content took my trailer to the Style Network about a year before they actually came on board. The VPs at Style thought it was an important story to tell and one that their viewers could connect with, however one-off documentaries were completely out of the realm of their usual programming that it just didn’t work. They came back to me about a year after our initial conversation and the VPs had come up with an over-brand series called Style Exposed, which would include one-off documentaries. “Baring It All” is the first in the Style Exposed series. Hopefully  tonight’s success for Style compels and propels them to continue to produce one-off documentaries with heart.
Q: Is the documentary available on DVD?
A: The DVDs are available through Amazon. The SCAR Project, Volume 1 book is also available on Amazon.
Q: How would you articulate the message you hope people get when they view your doc and the SCAR Project?
A: I want people to see that there is true beauty in strength and hope in the face of despair. There’s power in optimism and it’s ok to have scars and to look at them and let people see them.
In line with the SCAR Project message, the goal is to raise awareness and let people know that young women can and do get breast cancer. Early detection is the best prevention, therefore the more people who see the film or the SCAR Project photos the bigger the impact.
Q: How can people follow you, support the amazing things you are doing like this documentary?
A: People can keep up to date with my work via my website atwww.lostinvision.com or via Facebook.
Q: What are you doing next?
A: I’m developing a project that deals with alternatives to incarceration, with a focus on young women who are at risk, and we hope to help transform their lives before it’s too late.
Q: I have to ask… did you sleep with the Emmy? I mean… who wouldn’t?
A: LOL those wings are spiky! It was a night to remember! I’m on cloud 9 and SO PROUD of everyone involved with The SCAR Project & Baring It All, especially the amazing, powerful and beautiful young women living the reality of breast cancer, thank you for sharing your stories.
Q: Not really a question, but I’d just like to thank Patricia for a brilliant interview and also say “go break a leg!” in re: the “Baring It All” award at the Emmys this Saturday night. And I’ll just go ahead and say BRAVO! because I know it’s going to, as The SCAR Project intends: Raise public consciousness of early-onset breast cancer, raise funds for breast cancer research/outreach programs and help young survivors see their scars, faces, figures and experiences through a new, honest and ultimately empowering lens. So kudos Patricia. Cheers and kudos.
I’d also like to give a little shout out to Cincy SCAR girl Vanessa Tiemeier’s sister, Christina Blust, whose music plays the soundtrack to her sister’s SCAR story in Baring It All. Click here for more of Christina’s music.

June 17, 2012  

Jolene’s SCAR Story – Part II

To be so young and yet to have made such a splash and so many ripples of love.

[I didn’t want to leave Jolene’s story at the addendum from the previous post… because, although we know the end of her cancer story and that she is resting in paradise—as her brother puts it, or causing chaos among all the angels—as one of her friends posted on her Facebook wall . . .  Jolene’s story is far from over. Her SCAR portraits, her memory, her mama, all those of us who love her, and Flat Jolene, continue kicking cancer’s ass and taking names, fighting like our girl Jolene. In other words, she made some ripples down here while she was with us. I like to think it makes her twirl with delight to watch all those ripples of love she created making the universe feel like it’s a small world after all. While we can only sit here star-gazing—and surely Jolene is on the tip of the archer’s bow as he aims for that damn crab—Jolene is. still. making waves. But you, savvy reader, I know you already knew that, because you have caught a glimpse of our lovely Jolene. Plus, I figure you caught the “Part I” in the title of the previous post, and therefore caught on that there was going to be a sequel. So without further ado, here is Part II, written by Jolene’s (and my) dear friend Mary Carpenter. Thank you, Mary. You make pretty ripples too.]
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Mary star-gazing.

The Gifts We Leave Behind
Guest post by Mary Carpenter
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If we are wise, we live a life that fills not only us, but those with whom we share it a trunk full of memories. Sometimes we are not wise, though. Sometimes we are frightened and we hide from the pain, uncertainty, fear, and loss. We crouch in the darkened corner believing that we cannot bear one more trauma in our lives. And then, light peeks through the curtains and tiptoes over to that corner and taps us on the shoulder. It beckons us to draw the curtains open and embrace the sun that warms us . . . the clouds that make us dream . . . the rain that nourishes us . . . the wind that bends us . . . and live the life that awaits us.
Jolene did just that. She flung back the curtains and opened wide the window that brought her into my life and the lives of many others. She left not just a trunk filled with memories, but a garden filled with gifts for those she left behind.

Jolene (on the right) next to her lifelong friend Star

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Jolene began planting the seeds in her garden as a child. Perhaps then she wasn’t mindful of the seeds she was planting. She was just being herself… genuine, kind, considerate, loving, and funny. All of those attributes continued nourishing her garden as she and it grew and blossomed. Then the storms began to blow through Jolene’s life and she learned to bend with them gracefully instead of break. Those storms scattered more seeds throughout Jolene’s garden as the dew dripped from her petals and she was courageous enough to share them with us.
When the blades of the gardening sheers cut her stem, she found solace in a garden of flowers who had met the same storm called Phyllodes. Together, they nourished one another and strengthened each other’s roots. They, along with many other flowers who had been caught up in the cancer storm cultivated the soil of friendship in the garden.

Jolene surrounded friends and family

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.

Jolene’s first SCAR portrait

“The SCAR Project was something very emotional for me. It helped me
embrace my scars and realize that they are something beautiful and they
are forever a part of me. I also see it as something to leave this world after
I’m gone. Something for my family to look at and never forget the fight that
I fought for my life.” 
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In the middle of her hurricane, Jolene still dreamed and talked about the things she wanted to do and the places she wanted to go. Some were as simple as wanting to gather in a garden in Florida with some of her favorite flowers and whip off her fake petals once more while singing Red Neck Woman at a karaoke bar, but Jolene’s stem and leaves were too battered by the storm to make the trek, so a paper flower named Flat Jolene was born to travel the world to the places Jolene dreamed of going, but couldn’t.
She started her journey in Florida and now has gone to places all over the world on adventures that continue to be shared with Jolene’s family, friends, and many fans. She stood in for Jolene on a cold October weekend in 2011 for the opening of The Scar Project Exhibition in New York City.
It was the weekend Jolene died, but Flat Jolene continued living for her. She skated at Rockefeller Center, rode up the elevator in Tiffany’s, went to a Broadway show, and stood somberly at the 9/11 Memorial with the other flowers. Throughout it all, weeping dew knowing that the original blossom, Jolene, had been plucked from the garden and laid to rest.

Although Jolene’s life was short, her garden was enormous and will continue to grow. Her roots remain in the soil surrounding the flowers she has touched and nourished with her love of life. The gifts she left behind are not just the material ones like the beautiful ceramics she painted with joy and love for dear friends in the Petroglyph Ceramic garden. They are the flowers she gathered together who can support one another through more storms or dance together in celebration . . . the ability to appreciate the little things . . . “Oh the joys of Hospice living . . . today is sponge bath day! WOOHOO! count your blessings! yes, even taking a shower is a blessing so be sure to wash behind ur ears people!” . . . the understanding that just because a flower sometimes wilts doesn’t mean it is giving up . . . it is taking a moment of quiet reflection . . . the knowledge that another flower has faced a similar storm . . . the ability to choose how one dies and to gracefully, yet honestly live while dying.
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The greatest gift Jolene may have left behind, though, is a community of flowers who are a loving family for her Mama Bear Denise. From the flowers of childhood and high school that routinely check in on Denise and nourish her soil to the Phyllodes and cancer bouquet that blossom love for her, Denise is always surrounded by a devoted garden. This was reflected most profoundly at the recent Scar Project Kick-Off event for Los Angeles. It was a weeklong adventure that began and ended with a road trip taken by Joules Evans, Flat Jolene, and Mama Bear Denise. The Scar Project sisters and community embraced Denise and shared much dew to water the garden. They gave her an opportunity to be Jolene’s voice and see the impact her beautiful blossom had made when she opened her petals and leaves to the world. They allowed her to become a part of not only the garden Jolene left behind, but the blossom Jolene considered her legacy. She left behind a part of her she knew still needed her Mama Bear Denise to bloom.
If we are wise, we throw back the curtains and open the window when the light beckons us from that darkened corner like Jolene did. We weclome ourselves into the garden first and begin nourishing our lives with the knowledge that the gifts we leave behind are created in the gardens of our living and even in our dying as it is a part of living in the garden of life.
June 13, 2012  

Jolene’s S.C.A.R. Story – Part I

[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.]

As a fitting tribute to Jolene, hers was the last portrait taken down after the NYC exhibition. The flowers are from her friends who had travelled there to be with her, and from her SCAR sisters. Rest in peace, sweet Jolene.

This very special guest post was written by Jolene Von Millanich. It is her story, in her own words. Although we know the end of her cancer story and that she is resting in paradise, as her brother puts it, or causing chaos among all the angels, as one of her friends posted on her Facebook wall… Jolene’s story is far from over. Her SCAR portraits, her memory, her mama, all those of us who love her, and Flat Jolene, continue kicking cancer’s ass and taking names, fighting like our girl Jolene.
 
My Neverending Cancer Story

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.

Jolene’s gift for her friend Trish. The picture speaks for itself.

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!!

Jolene and her friend Mary after her jaw surgery.

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.]

And here are a few of those friends remembering Jolene at The SCAR Project Exhibition.