[I met today’s guest blogger at her SCAR photo shoot in DC this past spring when the cherry blossoms were all abloom and decking out DC for its annual festival. How. Very. Apropos. Methought as I watched this beautiful, courageous, WAY TOO FREAKING YOUNG woman bare her S.C.A.R.s for the camera. At first glance, Eliza’s bright blue-eyes distracted me from the fresh red “angry scars”—as she calls them. Her absolute reality of surviving cancer is as different from mine as my scars are from hers. Mine have faded a bit, as I’m a wee bit (ok, OK… she’s exactly HALF my age but TWICE me in wisdom and stature) older than my younger survivor sister. Mine look more like Japanese symbols for WTF? and are therefore not nearly as angry—though I definitely see red when I see hers. I’ve read before that “the fragility of the cherry blossom is the fragility of human existence.” This was just poetry before I met Eliza. She is currently the youngest of the SCAR girls. Eliza just finished grad school in May and turned 23 in June. Oh, and is planning a wedding. While fighting cancer in her spare time, after being diagnosed earlier this year at twenty-freaking-two. She calls herself an anomaly. I just call her awesome. As I’ve gotten to know Eliza I’ve come to see that beneath that beautiful pale skin is fierce hope unfading, which the sunlight dancing upon it only highlights.]
Guest Post by Eliza Hewitt
First of all, I should probably state that I’m only 23, a fact that I hope will shock anyone who feels that they are too young for breast cancer. Before my diagnosis, I was your average grad student working four or five jobs to avoid going further into student loan debt and working out the plans for the wedding of my dreams.
The discovery of my cancer has a tragically humorous story behind it. July of 2011, I decided I was fed up with my breasts. They hadn’t grown since middle school so I resolved I would subject them to a breast augmentation surgery. With a coupon for a free consultation in hand, I dragged my fiancé to the plastic surgeon’s office. I remember seeing a placard addressing the office’s policy on insurance covering the surgery if it was for reconstruction. So, as I’m sitting there waiting to meet with the doctor about a boob job, I remark to my fiancé, “Man, wouldn’t it would be great if I got breast cancer because then I wouldn’t have to raise the money for this boob job?” BOOM. There. There’s the awful punchline. I was a baby then and had no idea that the idea I said in jest was really a terribly callous joke that would come back full swing five months later.
Sitting on the exam table, the doctor found a pin prick of a lump on my right breast. He raised his eyebrows and asked if I knew about this. A part of me was embarrassed that my body could have something that could prevent surgery, especially since my regular doctor had not found anything during my annual visit two months prior. So I lied. “Of course, I know what that lump is,” I said. He told me to get it checked before the surgery plans could progress. I said that I would but already my mind was thinking that I would have to get back to work. Besides, I was 22. The world was at my feet and it was probably some dinky little cyst that would fade back into my body eventually.
So I sat on my knowledge of the lump for five months.
I filled my schedule with work and classes to avoid having to think about what the lump could be. In December of 2011, I had an unrelated surgery on my tailbone and a few days later, I started finding blood in my bra. Then, my skin felt hot and I noticed that the lump felt bigger. Oh no. Now, I’m going to have to call my doctor and admit the truth and growing evidence in my boob case.
Five months. It didn’t seem like a big deal.
In the end I couldn’t face telling my doctor’s office that I had avoided getting my lump checked out and now my boob was being weird, so I turned into a five year old and asked my mother to call. As she was describing my symptoms, it began to sink in how idiotic it was to think if I avoided something that it would go away. I call it the Ostrich Solution to life’s problems.
Five months. Is. A big. Deal.
The urgency in planning an ultrasound and then an ultrasound guided biopsy on the same day told a story that sent chills up my spine. When the technician slid her magic wand over my right breast, I thought someone had dropped a river pebble in my screen. There was a big black blob smack dab in the middle of my screen and I knew then that it was cancer. It had to be because nothing else can look as sinister. A week later, we got the official news. At 22 years old with classes to pass and weddings to plan, I had breast cancer. It was triple positive, meaning that it loved estrogen and progesterone and for dessert, it was partial to HER 2.
A week after my diagnosis, I had a bilateral mastectomy. I was my breast surgeon’s youngest patient. The night before my surgery, I wanted to see mastectomy scars. If I was going to have to wear the scars for the rest of my life, I wanted to know what I would see in the mirror. What I found was The SCAR Project. With each picture, I found stoic, resolved women who dared me to think them weak or pitiful because of their scars. These women were above their diagnosis and I took heart seeing their strength, even as my soul cried for all the beauty affected by breast cancer. It helped me through the night, the surgery, and the breast surgeon’s finding: because of lymph node involvement, I was upgraded to Stage 2B.
A few months later, I fell into a deep recess of my former life and couldn’t bear looking at myself without the mirror being entirely fogged up. I emailed David Jay, never daring to hope that he would respond back. I had just gotten involved with the movement to bring the SCAR Project to DC and felt that my contribution would be in the background. I was satisfied knowing that I would help in this way. But David did email me back and the world opened to me again. He asked if I wanted to be photographed. I cried when I thought that anyone would want to take a picture of my scars that I despised even if they meant I was surviving. Here, my poor body was doing all it could to surmount the effects of chemotherapy and I could only see them for what wasn’t there.
When I met David in DC, I could barely breathe from the expectation that he would change his mind because as a 22 year old, I felt I should have had a youthful, unabashed spirit that wasn’t facing a life threatening disease. Had I never been diagnosed, I might have felt like a model off to a photo shoot.
David told me my scars were beautiful. At first, I rejected this thought thinking maybe he couldn’t see how harsh they looked in the light. But as he took picture after picture, I started to realize that my scars were nothing to be ashamed of. Yes, they made me different from other women my age, but they also made me more resolute and strong like all the women who had photographed before me and given me strength the night before my surgery. It is still hard to look at myself sometimes. I would be lying if I said the opposite. But through my picture and my involvement with the DC exhibit, I have made peace with myself and my scars. Because our scars are there to remind us of the times in our lives that are important to remember and they paint a story of not just survival, but living.
Follow Eliza’s Adventures With Cancer aka her blog HERE.
Check out the story the NV Daily did on Eliza HERE.
[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.]