Tag Archive | Jolene

Under-the-Radar-Girl

[As The SCAR Project Exhibition is en route to Rio de Janeiro, Brazil, where it will premiere this Thursday, today’s special guest post by Aussie SCAR girl Heidi Walker, seems an apropos send-off from Sydney, where The SCAR Project just wrapped up its recent exhibit.  Heidi attended the Australian premiere. It was a beautiful moment in SCAR history for the exhibit to come back to where it all began, when SCAR Photographer David Jay’s dear friend Paulina was diagnosed with breast cancer. As good friends, he had taken her picture hundreds of times, but the picture he took of her after she had her mastectomy and then showed up in yoga class in her leotard and her new reality of having only one breast, changed things. For David, for Paulina, for all the women who would than contact David to have their portraits taken…for Heidi.]

dreamer

Guest Post by SCAR Girl Heidi Walker

I am a dreamer. I love to sit with my thoughts, and plan and play, and let my mind wander into nothingness. The future, I just love dreaming about the future. Don’t get me wrong I think I can live in the now and I understand the importance of that “power of now” mind control, but daydreaming is what I do best. I’m happy there. Tuesday 7th November 2006 dreaming ceased. My world stood still and everything kept spinning around me. Reality was my only mind wander. Dark, cruel, harsh, messy, day-by-day, chemo-to-chemo, reality.

I’d noticed a lump, like a pea under my right arm on my honeymoon in the April. I really didn’t think anything of it. A couple of months past until I made my 1st Doctors appointment. I mean I was only just 24, no family history, and healthy.

Cancer just doesn’t happen to this under-the-radar girl.

The doctor agreed, “Just a swollen lymph node,” she said. “Cancer feels grisly; yours doesn’t,” she said. “You’re too young,” she said. Hmmph. By October I started noticing my right arm felt strange, tingly, and the lump had increased. I also felt another lump within my breast. Lump at ten o’clock, lump at eleven o’clock; the clock was ticking on this killer boob.

Those words “your results have been remarkable” make me giggle now. I don’t know what I thought the doctor was going to announce *Cue trumpet “amazing, remarkable golden nugget found within”. Those words confused me. Huh? ”Cancer cells have been detected.” Hold on, a little clearer for the blonde in the room, so, what you are saying is I. Have. Cancer?? *Cue river of tears.

So began this rollercoaster of life with far more twists and turns than I had imagined it would. The previous month, I’d trekked 42kms with my husband and in-laws. I’d just received my wedding album. And I’d resigned one job, to start a new one that would allow me to begin my dream make-up artistry course: *dream-life. But the month in front of me, I’d be having my right breast cut from my body. I’d begin In Vitro Fertilization, in case I became infertile from the six courses of chemo I’d begin.

And I’d throw out all my low cut t-shirts *Booo, add wig shopping to the to-do list, and wonder if I will live, or die.

I was so scared for the girl who would wake up from the anaesthetic, my first anesthetic. Would she be mad at me for taking her breast? Would she forget and not know what I had done to her until she looked down and saw . . . well, nothing but a scar? It was like another person would be waking up. Would I loose myself, along with my breast? I wasn’t sure.

For a while I think I disappeared, became a shadow of myself. I had to control my mind. No future dreams or plans. It felt like a tease to dream of what I felt I wouldn’t reach. Day by day, I just got by, holding on to a glimmer of hope that that dark shadow lurking over my shoulder would dissipate and the sun would shine again.

I stumbled across The SCAR Project accidentally. I hadn’t seen the images, only a small piece from David Jay about his project online. Four years post cancer, I wanted to do something meaningful. Something that might give other young women some hope that cancer isn’t always the end. Sometimes it is.

But I knew that all I wanted when I was first diagnosed was to see other young women growing older . . . having families . . . living . . . thriving . . .

Even though that isn’t always the reality. I never imagined that as I left David’s Bondi studio, a huge wave of empowerment, freedom, and acceptance would come over me. I felt as though I was truly honest for the first time.

Heidi

This is me. I’m imperfect, but I am alive. Immortalized in print, naked from the waist up.

These images I now know well, my friends, my SCAR sisters. They often stare back at me from my laptop; they give me strength and inspire me when I need it. They are raw and deep; transparent. They are take-your-breath-away-beautiful & shocking. Young women like me. Like you.

These portraits recently graced the walls of the David Jones Elizabeth Street store, Sydney, my home soil. The space was beautiful Circa 1920’s, high ceilings and a soft golden glow pours through the tall arched windows. My breath was literally taken away. I stood staring into the eyes of Darling Jolene, with a lump in my throat and my eyes tingling. So beautiful, painful and honest. I saw Paulina the first of David’s portraits, starring down the camera fiercely; I saw her standing in front of her image, her past. She looks beautiful, fit, and healthy.

Paulina

Paulina standing by her SCAR Portrait at David Jones Gallery in Sydney, Australia. 2014

My husband and I attended the opening night, and I have been back a second time with my mum and sister. To share such a meaningful part of my life, my healing process with them was a feeling I can’t describe. As they walked around with me I shared these women’s stories, past and present, they were in awe of their courage. Some woman are smiling, even laughing, others are starring into your soul, another crying. Some are living on this earth, some have moved to the next world. I have seen these images before and been touched.

Heidi standing by Barbie's SCAR portrait.

Heidi standing by Barbie’s SCAR portrait

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“I am one of these women; yet, standing face to face with them, I ached joy and sadness with every cell of my being.”

I look back on 2006 with mixed emotions. I was married, *smiley face. Breast Cancer happened, *sad-angry-confused face. But I feel lucky that I’m starring down the 8 year barrel looking back to what was, having faced the struggles that come with illness, disfigurement, life hurdles, and being a young woman. I never want to meet that C witch again, but l try to take away anything positive I can from this experience—or any tough experience—to learn what I can about myself, and about others. Breast cancer, well, it just was. I feel lucky that I can say that today. I hope I can continue to say that. It just was. It changed much in my life, altered a cruisey path. I am scarred, mostly scars that run flesh deep. But I am here now, living and dreaming.

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Heidi and her husband Ryan. Trekking down dreams.

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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.

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.