Incurable and Incredible are both i-Words. "You Are Not a Statistic." Guest Post by Cincinnati Author/Blogger Tami Boehmer

[Today's guest blogger is my friend and sister-Survivor/Author/Blogger/Pink Ribbon Girl, Tami Boehmer. Tami is the author of From Incurable to Incredible: Cancer Survivors who Beat the Odds. Besides beating the odds herself, Tami has spent the past couple of years traveling around the country talking to others who are living with stage 4 cancer, gathering stories of hope to share in her book, on her blog, and when she speaks. Because it's such an inspiring book, and in the spirit of battling cancer and beating the odds, The SCAR Project Cincy would like to offer a free copy of Tami's book to one lucky reader. Follow The SCAR Project Cincy blog on Facebook, or leave a comment here, and when we hit 100 followers on Facebook, we'll write everybody's name on ping pong balls and throw them in a keg, I mean, a barrel... then I'll get my hairdryer, and we'll have a fabulous drawing! Ok, not exactly. I don't have a hairdryer. But I can promise you this: it will be completely random. And somebody will win a copy of Tami's book.]

Guest Post by Tami Boehmer

It is interesting how roads intersect in the breast cancer community. I met Joules Evans, who is heading up The Scar Project Cincinnati exhibit, through my cousin’s ex-wife. After much chatting on Facebook, we met in person and, with Joules’ boundless enthusiasm, she told me about this outstanding piece of work.

Later, I had the pleasure of meeting three amazing local women featured in the exhibit. Well, surprisingly I already knew Heather Salazar -- she is a fellow board member of Pink Ribbon Girls, which is the beneficiary of the exhibit! Pink Ribbon Girls (PRG), like The Scar Project, is dedicated to helping and spreading awareness of young breast cancer survivors.

I was 38 in 2002 when I was first diagnosed with stage II breast cancer … too old to be featured in The Scar Project, but young nonetheless. If it weren’t for PRG, I would have felt all alone as I sat in the chemo suite full of people in their 60s, 70s and 80s. While there were many nice people I’ve met while getting treatment, I had a different experience from them. I was working and had a three-year-old child. When I went to my first meeting, I knew I had found a home with these upbeat, brave women, many of whom are still friends today. I later joined its board, paying it back for all the support I’ve received.

In Feb. 2008, I insisted on seeing my breast surgeon a month earlier than my regular check-up because of a large lump I discovered in my right armpit. I had worried from time to time about some swelling and hardness. Since the swelling would go down, my surgeon thought it was probably hormonal. I was so relieved; I didn’t question it.

She sat me down with the results of the ultrasound, and sadly looked at me. My worst nightmare came true – after five years of being cancer-free, it had come back with a vengeance. The tumor was a very large nine centimeters in diameter. My PET scan report showed spots in lymph nodes in my chest and, most worrisome, my liver. It was stage IV breast cancer.

My first thought was my daughter, then nine years old. I knew I had to do everything I could to be there for her.

I made the decision to not return to a very stressful job and start the new job of getting Tami well. I researched clinical trials and other research online and sought several doctor opinions. I made exercise, prayer, visualization, and affirmations a daily routine and switched to organic, whole foods and products.

But still, I fought off depression and was haunted by the sinking feeling I was going to die. With all the focus on myself and getting well, I felt useless and empty. Yet I gained strength from hearing success stories of other survivors.

After more than 20 years as a healthcare public relations specialist, I decided to put my interviewing and writing skills to good use. I began interviewing cancer survivors from around the country for my book, From Incurable to Incredible: Cancer Survivors Who Beat the Odd (released June 2010). My book features 27 stories of individuals who beat the odds of a terminal diagnosis.

I also started a blog, www.MiracleSurvivors.com, where I share stories, cancer resources and my own experiences as a cancer survivor. One visitor recently told me that at her one-year check-up, her doctor was surprised by her new, upbeat attitude. She told him it was from reading my book and blog. That’s what makes it worth it to me.

My goal is to give people hope and a different way to see themselves as a survivor and patient. I encourage my followers to be active participants in their healthcare by researching their options, getting additional medical opinions and taking care of themselves in body, mind and spirit. I feel it’s detrimental to give patients death sentences. My mantra is: “Statistics are just numbers that lump together a large, diverse group of individuals. You are not a statistic.”

This seems true to my situation as my scans have been stable with only two spots in my armpit. My goal is “no evidence of disease,” and I believe I’ll achieve it.  When I struggle, I think of how the people who shared their stories in my book and on my blog never gave up despite setbacks. It gives me hope and purpose, knowing I’m helping others get through their struggles, too.

I support The Scar Project because of the way it empowers women who participated in it and those who view it. These women are taking back their lives by baring it all. There is no shame; just beauty and strength emanating from them.

And I’m so grateful the exhibit is supporting PRG, an organization near and dear to my heart. PRG is celebrating its 10^th anniversary this year, and is reaching even more women with its Mommy Has Breast Cancer (MHBC) program. MHBC  is expanding what we’ve been doing for years: assisting young mothers with services and support to make their lives a little easier while going through treatment. By attending the exhibit, you’ll be inspired and empowered, knowing you are helping young survivors. Hope to see you there!

From Incurable to Incredible is available at Joseph Beth Booksellers, Whatever Works, New Thought Unity Center, and Good Samaritan Hospital’s gift shop in Cincinnati. You can also find it online on Amazon, BarnesandNoble.com, and Tami’s site, www.MiracleSurvivors.com.

 

The Absolute Reality of Stage Zero

Posted by Joules Evans

[In our continuing series of interview with/blogs by SCAR Project participants, I’d like to introduce you to the girl on the other side of the proverbial microphone and the Q’s, not to mention, standing beside herself in the photo below: Jessica Dietze.]

Q: Can you tell us a little about the cancer part of your story?

Jessica: I was 23 when I was unexpectedly diagnosed with the earliest stage of breast cancer: DCIS (Ductile Carcinoma In Situ) after I had a simple bilateral mastectomy for fibrocystic breast disease. I have no family history of breast cancer so it was more than unexpected.

I was 19 when I had my first lump removed because of fibrocystic breast disease, then officially diagnosed when I was 20 and started to try anything that would offer relief. I had a couple more surgeries to remove horribly painful lumps since that was the only thing that offered relief. Right before my 23rd birthday I was seeing my surgeon for yet another lump, and asked him if he could just take both of my breasts.

My mom suffers to this day from fibrocystic breast disease and it does impact her life. I didn't want to keep suffering.

So that was in August . . . and it took until November . . . after lots of fighting with the insurance company before surgery was approved. My doctors said it probably saved my life.

With how dense my tissue was they would have never found it until it was a higher stage. One oncologist said it would have been like finding a grain of salt in a straw.

Q: What drives a girl from Nebraska to fly across the country to NYC to have fashion photographer David Jay take pictures of what [Surviving Cancer. Absolute Reality.] means for you?

Jessica: I did The Scar Project to let people know, stage zero or not, no matter your age, if you lose your breasts you are affected. It changes you even when you say you’re not going to let it. Going through the surgery and losing a part of you that is a big part of femininity will shake you to your core.

I loved how raw the project was and I felt this connection to the project, like it was something I had to do.

Q: What did having your portrait taken for The SCAR Project do for you? How does it feel to stand beside yourself in a [Pulitzer nominated] exhibit? Or when you see yourself in The SCAR Project book, on DVD in The SCAR Project documentary “Baring It All”, on Style Network, in Life Magazine Online...?

Jessica: When I look at the pictures in the book or at the exhibit it’s almost an out of body experience. It’s hard to grasp the fact that I will forever be different because of breast cancer. The fears, the struggles, the future of my life will always have the black cloud of cancer hanging over it. When I look at the pictures in the project it makes me feel less alone . . . helps me deal with those emotions, but yet brings out more in me than I never thought I could feel towards, essentially total strangers. My struggles over the past few years are minor in the grand scheme of life. I look up to all of the women involved and the fights they have had to face. I can’t believe that I’m a part of something so amazing. It’s surreal and breath taking to stand amongst some truly beautiful women.

I think it’s surreal to have my photo part of such an amazing awareness campaign. I think the pictures really affect people more than any other project or awareness campaign does. It was surreal to see my picture with the LIFE logo in the bottom corner but I couldn’t be any more proud to be amongst the group of women that I am. David is amazing and I hope this project continues to do all that he hoped for and more.

Q: Where you are now in your life?

Jessica: 2011 has been a whirlwind; one revision surgery for scar tissue turned into me losing both my implants due to infection. I’ve never had to face my body with no breasts. When I had my mastectomy I had immediate reconstruction.  It’s easy to be bitter about all of my complications but then I just feel guilty. I’m healthy and in July I got my implants back so I blend in with the rest of society again. I’m ready to start a family with my husband, move past all the surgeries, medical bills, and constant rut of life I feel like I have been.

Q: What surprised you most about your experience being photographed for The SCAR Project?

I was surprised at how affected I felt after we took a break and looked at the photos. I used to try and hide my emotions a lot more then I do now and I remember fighting back the tears. After I got the email from David with some of the shots from the shoot I was just in awe at how gorgeous the pictures were and for the first time since my surgery I wasn’t ashamed of how I looked.

Q: What has surprised you most about yourself through your experience with The SCAR Project...through your experience with cancer?

Jessica: How emotional and continually affected I am by it. Having stage zero breast cancer is hard, it’s almost like people don’t believe me. I didn’t show any outward signs of the typical cancer patient so everyone just assumed I was, am fine. Toss in some guilt as to why I was lucky enough to have mine caught so soon and feeling overwhelmingly blessed that it was—it’s tough. It’s confusing when doctors don’t know what your future risk factors are and you feel like you are just in this guessing game with cancer. Some days I feel like I’m consumed with all the “what ifs?” . . . other days I’m ready to tell the world it could happen to anyone!

Q: What's the best thing that has come out of the scar project for you personally?

Jessica: I think it has made me stronger and sensitive to others and the challenges they face in life. It has also given me a confidence I’ve lacked my whole life, I feel powerful and beautiful. I also feel fulfilled to be part of the awareness campaign.

Q: What do you hope happens because of The SCAR Project?

Jessica: I hope the project brings light to early detection. That it gives hope and courage to anyone facing breast cancer. I also hope that it opens people’s eyes that may not be directly affected, that cancer can happen at all different stages and be more accepting of the effects it has on those dealing with it.

Q: Will you be able to come to Cincinnati for the exhibit this fall?

Jessica: We will be road tripping from Nebraska!

Joules: Yay! Cincinnati, The SCAR Project Cincy Team, and I look forward to hosting you and the other SCAR Project subjects who will be gracing our city and helping spread awareness about early onset breast cancer. 

Q: They say a picture is worth a 1000 words. What’s the message of your picture?

Jessica: Sadness, imperfection, pain, strength and confidence.

Joules: I don’t mean to have the last word here, but I’d like to add one more word: Beauty.

*******

For more articles online about Jessica’s story, please check out:

www.omaha.com/article/20100306/LIVING/703069864

http://secondbasedispatch.com/2010/10/15/beauty-bravery-breast-cancer-revisiting-the-scar-project/

Cocktail Party Notes on Napkins and a Red Carpet

Posted by Joules Evans

Diana, David, Heather, Vanessa

If you were watching pictures from the SCAR Project documentary screening/cocktail party wallpapering Facebook last weekend, you probably noticed we had a very special guest with us.

Yes, it's true that Pulitzer nominated SCAR Project photographer David Jay did make a surprise visit to Cincinnati for the screening. (It was his first trip ever to Ohio, btw—imagine his surprise when we took him for a walk across the Purple People Bridge and he also got to see the blue grass on the other side;)  It's also true that Cincinnati SCAR Project subject Vanessa Tiemeier and Dayton SCAR Project subjects Heather Salazar and Diana Featherstone made a special appearance, and each shared their SCAR (an acronym for Surviving Cancer. Absolute Reality.) Project stories.

Diana, David, Flat Jolene, Heather, Joules, Flat Jolene,
Vanessa, Flat Jolene, Pam, Litsa

But there was also another guest of honor: Flat Jolene. Flat Jolene travels the world in search of epic adventures for the original Jolene, the SCAR Project subject we recently posted about here. Flat Jolene's mission includes "raising awareness about young adults (men and women ages 18-49) who are living with metastatic disease." The SCAR Project Cincinnati Exhibit is in sync with that mission. We'd like to thank Flat Jolene for coming to our cocktail party!

Flat Jolene is in the building!

We'd also like to thank the original Jolene for being my very special guest and co-blogger on this post.

So without further ado, here's Jolene's story, in her own words:

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!!

Update: Jolene's chondrosarcoma in her jaw recurred before the end of 2010. She was recently advised that the genetic testing for Li Fraumeni is positive and she underwent another grueling 18 hour surgery almost identical to the surgery she had last June. More of Jolene's jaw was taken and rebuilt. A couple of months after her most recent 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 is busy enjoying time with her family and friends

Video message from Jolene:

To our dear Original Jolene: Flat Jolene was with us (in the cardboard!), but you were with us too, in all of our hearts. We have mad love for you here in Cincinnati, keeping you always in our thoughts and prayers. Thank you for your video message. It meant the world to us. You mean the world to us. Jolene, Cincinnati loves you!

Heather & Diana: Beneath the Pink - Lifting the Curtain on the Effects of Breast Cancer

[In our continuing series of articles about/interviews with The SCAR Project subjects, we'd like to introduce guest bloggers Heather Printz Salazar and Diana Featherstone. Both of them work with the Pink Ribbon Girls of Dayton and both of them will be at the cocktail party/documentary showing Thursday evening from 6-9.]

Heather Printz Salazar

Heather and her daughters, Lexi and Cara

It was 2007 and I was in New York taking some teens on a mission trip around the city before I participated in the Scar project.  My mom and dad flew in with my daughters Cara and Lexi, our son Caleb was with me on the mission trip.  My oldest son and husband were back home for his basketball game.  The whole experience was very surreal.  I had been going to New York since 8th grade and I am in love with NYC, however, it was my parents' and kids' first visit.  We woke up the next morning to go meet David and do the shoot.  My head was spinning.  “Should I be doing this?”  “Should I allow my girls to participate?”  “What were my parents really thinking?”  I got out of the shower and total peace just came over me.  I sat all 3 kids down on the bed and explained to them why we were doing this.  I told them breast cancer was not pretty, it was very ugly and difficult.  They were each sharing their thoughts about when mommy was sick, lost her hair, couldn’t drive, and getting medicine in her veins for a year.  I told them our story is a little different because Lexi’s mom had died from breast cancer, despite the fact that I got breast cancer too.  I told them God made us a family, but both girls have be aware about breast cancer.  I told them we were participating in a project that shows the world the truth about breast cancer, and that we were working to end breast cancer so they don’t have to worry about it anymore.

Breast Cancer had first come into our lives boldly in 2002 when I met a young woman, Alexis, who was nearing the end of her battle with stage four breast cancer and needed a home for her baby girl.  I prayed about this and told my husband Steve I thought we should adopt her.  His first response was: What?  We already had three small children.  Five weeks later, we had a new baby. Lexi.  

Throughout the next year, we took Alexis to chemo, doctors’ appointments, and then hospice. It was so incredibly painful to watch someone so young go through so much.  Alexis was raised in the foster care system and had very little support.  Before we had met, she went to her mastectomy by herself. Then she took a cab home from her mastectomy. Alexis had experienced so much adversity throughout her life and she wanted to ensure that her baby grew up secured and loved. Alexis died at the young age of 24. 

Two years later, with no family history, I was diagnosed with breast cancer at age 31. All I could think about was seeing Lexi’s mom die from this terrible disease.  Would my children grow up without a mother?  Would Lexi lose two mothers to breast cancer? 

I truly believe that Lexi’s mother is my guardian angel; she probably saved my life. She had been unaware that young women could get breast cancer, and her initial diagnosis was late stage. Afterwards she would tell everyone she knew to check their breasts.  If I had never met her, I highly doubt I would have ever performed a self exam, and I would have been dead before my first mammogram. 

That was our background as we all piled in a NYC taxi cab to the studio for my SCAR Project photo shoot.  As soon as we met David and Joanie, I knew we were doing the right thing.  David was sweet, professional, loving, and passionate about the project.  He captured exactly who we are and what we stand for as a family.  My husband cried the first time he saw the photo.  I left empowered to do what I was called to do. 

Through my life experience, I feel passionate about supporting women through breast cancer.  I cannot express how excited I am to start Pink Ribbon Girls of Dayton.  There are no specific groups in the Dayton area for young women dealing with breast cancer.  Through this non-profit organization, young women are offered education and awareness for early detection, support, and an outlet to express fears.  As I know firsthand, breast cancer is NOT prejudiced, it doesn’t care if you’re black, white, rich, poor, young or old.  It can interrupt your life when you least expect it.  We need to leave a legacy with our children’s children by curing breast cancer.  Until then, we need to support the women fighting the disease so they can be around for the cure.

[And that's when Heather heard about Diana, who had just moved to Dayton a month prior to being diagnosed with breast cancer. "Heather showed up at the doorstep with flowers," said Diana, who was 32 when she saw a lump in the mirror. Thankfully, her doctor ordered a mammogram.]

Diana Featherstone

Diana

I, like many others, connected with David Jay through a post on the Young Survival Coalitionʼs message board. Before cancer and even during treatment, I made every effort possible to avoid having my picture taken. So, you can imagine what it took for me to decide to fly to New York and bare my scars for a total stranger.

Before I arrived, I was very nervous about not being model material. David was used to photographing beautiful women for fashion magazines. I was a mother of two from the Midwest who survived chemo by eating macaroni and cheese. Lots of it.

It turns out, my worries were completely unfounded. David and his team made my husband and I feel completely comfortable from the minute we stepped in the door. His dog even helped herself to a snack from my purse. After trying on a few looks, the resulting photo was one of empowerment and strength...something I really needed at that time.

My husband, McKay, saw me and my scars in broad daylight for the first time that day. This is what the SCAR Project gave back to me. This is why I am so passionate about the story he is trying to tell.

As survivors, we spend a lot of energy making the people we love around us feel ok. Partly because we want to move on as much as we can, because we donʼt want to scare people away, because many people donʼt want to see beyond the pink.

These photographs, and the people committed to sharing the stories behind them through film, exhibitions, online media and more, lift the curtain on the effects breast cancer. I thank them for their efforts on behalf of myself, and everyone else who has been told that they were too young for breast cancer.