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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.

Soldier Interrupted

[It humbles me and is my deeply felt honor to defer this post to my friend/survivor sister/wounded soldier/and one of the newest SCAR girls, Barbie. I was at Barbie’s quite recent SCAR photo shoot. She is one of the three newest young women to be photographed by David Jay for The SCAR Project.  By that, I mean UNFORTUNATELY… there are new SCAR photos… which is why we are doing this. The youngest of the 3 was 22. She was diagnosed when she was 21. Barbie was diagnosed WHILE IN AFGHANISTAN. I’m sorry for the all caps but again… this is why we are doing what we are doing. We must end this bitch of a disease. I think SCAR Project LA producer Diana Haye said it best: “Try fighting in Afghanistan, getting diagnosed with breast cancer, having a mastectomy, and then having the guts and fortitude to help raise awareness for other women baring it all and showing their scars…Barbie did.” And here’s what Barbie said, in this special guest post.]

The dog tags and camouflage are real. I am still active duty. I have been in for over 17 years and 2 combat deployments. In February 2011, I was diagnosed with Stage IIIB Breast Cancer, four months after being deployed to Afghanistan.

At my own risk, I wanted to participate in the SCAR Project because it is important to me that people understand and know anyone can get breast cancer. In my experience, it’s not something that’s often paid particular attention to due to the overwhelming male population. At some units, I was one of a few and, at times, the only female. We tend to think we are protected and immune to things because we are given a weapon, a FLAK jacket and a Kevlar helmet.

I spent most of my time taking care of the troops that were under my charge, a duty that most service members don’t take lightly. I would lay down my life for them. That’s what happened in this case. It’s just that the topography of the battlefield got personal, encroaching way beyond the borders of Afghanistan.

I wasn’t willing to accept the lump in my left breast that became obviously larger to me over the weeks that quickly turned into months. I sacrificed my own health and life as long as I could in order to stay and deploy with my unit. We had prepared and trained tirelessly for months and worked ridiculously long hours.

Leaving my troops and my unit behind was and still is harder to deal with than my breast cancer diagnosis. The feelings that I abandoned and deserted them and wasn’t able to ensure that they were safely returned home to their families will haunt me for years to come. This may be hard for many people to understand but that is the reality within my world.

Breast Cancer has torn me away from not just a career but a way of life that I loved and dedicated and sacrificed for. I am not going to ever get over Breast Cancer or move past it. I will live with it for the rest of my life.

I don’t believe most people actually “see” Breast Cancer. They hear about it but they don’t listen. It is just a terrible thing that happens to everyone else but could never happen to them. I hope that when they look at my photograph, they open their eyes and allow themselves to absorb and take it all in and really think about why this is happening to so many young women.

Everyone needs to understand the absolute reality of this disease. We have the power to speak up and make a difference. The importance of this goes deeper than just me. My whole family has inherited the Breast Cancer Gene (BRCA2). The fact that there is a great possibility that I have passed this gene on to my son and that my nieces are also at risk makes this whole fight worth it. Even if it is 5, 10, or 20 years from now, it could save their lives. It is my responsibility to preserve their future and ensure their longevity.

Every woman David Jay has photographed has their story. That is what makes this project so important. As different as we all are, we share a common bond. It connects us, and it reaches out to others, and connects them to us as well.

David Jay has given me the gift of allowing myself to be seen by others as I am now after being chewed up and spit out by cancer.

As awkward and uncomfortable as it may be for others to view, I am not embarrassed or ashamed. My young life has been rudely interrupted — and yet, I continue to forge on and accomplish things that others only talk and dream about. Perseverance, endurance, determination….these are the things that have been taught to me and instilled in me. I live in a world where giving up or giving in is not an option. Overcoming is the only way.