Jul 13, 2011

Jolene's Story

Posted by Vanessa Tiemeier

Right now as I write this, I have goosebumps and feel nauseous. My good friend and fellow SCAR Project photo subject, Jolene, is fighting the fight of her life right now. I consider her a friend, although we have never met. However, her personality shines through her Facebook posts and she is witty, blunt, forward, and honest.

Most people dealing with cancer have to adopt some sort of message-relaying stystem. Mine has mainly been through my Carepage. I tend to be somewhat vague, usually upbeat, and not too focused on my situation. I am vague because I don't like to have to go into details that most people won't understand anyway, am upbeat because I don't want people to worry and it is usually easier for me to grin and bear it that it is to spill the beans, and don't like to focus on my situation because I hate the fact that cancer is a part of my life and just want to be excited about other aspects of it. I don't like to be in the spotlight. People call me brave, or "so optimistic", but in reality, sometimes I wish I had the guts to just tell like it really is...

Which is why I seriously admire Jolene's no-holds-barred attitude. I can only hope to be as genuine and self-aware as she is everyday.

Jolene was 17 years old when she found out she had a Phyllodes tumor. Three things to point out here: 1. SHE WAS 17! 2. Phyllodes tumors account for less than 1% of all breast cancers. 3. Her surgeon came to her house to explain her pathology report because he himself hadn't even heard of such a thing before her. And if this seems incomprehensible to you, believe me, you are not the only one who cannot wrap their head around it.

But that is just the beginning of Jolene's ordeal. Since her Phyllodes tumor detection, she had a different 11 cm sarcoma tumor (the size of a softball), had a double mastectomy, more Phyllodes in her lymph nodes, got a Stage 4 (Metastatic cancer) diagnosis, countless rounds of chemo, a 7 cm sarcoma in her jaw (which grew that big in 7 weeks), followed by the right side of her jaw removed and reconstructed with her Fibula from her right leg, only to find out a year later that the cancer returned to her jaw so she had to then remove her entire jaw using her left tibia this time, many rounds of radiation to her face, a solid mass behind her eye that was destroying the bone of her sinus and cranial cavities, cancer spots that showed up on her jaw again (even after both major surgeries) as well as spots on her lung, surgery to relieve the pressure/pain from behind her eye, and had a mini stroke from the tumor on her brain....which brings us to today.

I cannot even begin to express my thoughts on all this. I think it hit me most when her Flat Jolene page (friends & supporters who travel with cut-outs of Jolene's head so she can "be" at places all over the world) posted this notice: Donations for Jolene's Celebration of Life Services - Helping her family to celebrate her life now and in the future. Jolene is in Hospice at home. She sums it up best herself:
"good morning world!!! another day, another thing to be greatful for!! Hospice social worker and nurses coming today, then its Tinkerbell time, and more time spent with my great friends and family!! they know who they are!! thanks guys for being here for me everyday and making sure im being well taken care of and not alone!! this past week that i've been home has been full of very special moments, laughter and tears!"

Jolene, I feel in some small way deeply connected to you, since we have 2 things in common: We allow the world to see us as we are through our SCAR Project photos, and we have Stage 4 mets. Although we share those 2 things, I will never measure up to your true beauty. You are so wise, raw, real, graceful, compassionate and sincere. I am humbled by your poise and inspired by your passion. To say that you have touched the lives of many would be an understatement. Because of you, I realize that every moment is precious and should be lived to the fullest.

I dedicate my involvement in the the SCAR Project to you. I will share your story to everyone I meet. I try to live by the motto "Live Sincerely." You truly do. Thank you.


  1. Very nice post - thank you for sharing her story and yours. Looking forward to the Cincinnati exhibit.

  2. My sincere sympathy goes out to the family and also to her friends....those who knew her were blessed and those who did not get a chance to know her....their loss. Her story is truly an inspiration to us all.