Have you recently been diagnosed with cervical cancer? Or are you a 3 year survivor, a 5 year survivor, a 20 year survivor?
Have you always wondered how to talk about your experience in a way that will help prevent others from having to go through what you went through?
Would you like to get more involved in educating your local community about prevention?
Whatever your story is, if you want to advocate to get rid of this disease once and for all...
CERVIVOR is for you!
Help end cervical cancer!
What I did to support her, and what I do now are not enough. I could build her a million bridges or take her around the world one thousand times and not be able to cure her disease. In an attempt to support her, I simply care for house and home, I ask her how her day was, allow her to vent and let her know that I love her with all my heart.
Sometimes life takes you in directions you never expected. I have never thought of myself as a writer. I never set out to be an inspiration for people or even to be an advocate for a cause. I also never planned to hear the words, “You have cancer.”
Life is what happens while you are busy making other plans. I started out blogging for very selfish reasons: I wanted to be able to update my family and friends without having to call each person individually. I wanted a way to document what was happening to me, and it was honestly therapeutic to get all my feelings out in writing.
I didn’t set out to make a difference, be an inspiration to others, or even to create cervical cancer awareness. As my cancer journey evolved, I was contacted by a variety of individuals and there was one common connection: they had all seen and were touched by my blog. It was after these individuals started contacting me that I realized my blogging wasn’t just for me, or even just for people who knew me. It was a platform to inspire others and spread awareness about cervical cancer and HPV.
Today, advocacy is an important part of my life. I have been fortunate enough to work with Roche to develop a video chronicling my story which has been used to reach out to doctors across the state of Indiana to express the importance of screening for HPV. Through Cervivor, I have had the opportunity to join a group of women who share my passion for advocacy. I had the fabulous experience of attending Cervivor School San Diego to learn more about how to effectively advocate for awareness and how to share my story in the most impactful way.
Cervivor School ignited a flame for advocacy. Working along with these passionate women, there are several great things in the works. We are working to do outreach at a variety of colleges to help educate students and professionals about HPV and cervical cancer, organizing more opportunities for Cervivor schools, and developing a fabulous campaign for January, which is Cervical Cancer Awareness month. So, why is advocacy important? Well, for starters, did you know that it is possible to completely eradicate cervical cancer? Let that sink in for a minute.
According to the American Cancer Society, it is estimated that there will be 12,900 new cases of cervical cancer diagnosed in 2015 and about 4,100 women will die from cervical cancer in 2015 alone! That is more than 11 women per day dying from a cancer that is preventable! I cannot imagine a better reason to advocate.
We could end this cancer! We could end these deaths! Advocacy is important, no matter how big or small. I have embraced my passion for advocacy. Afterall, if everyone just waited for someone else to do it, it would never get done.
We didn’t get this post from Ambassador Danielle until very late October, and, because the National Race to End Women’s Cancer last week, we needed to write about that. It doesn’t make this post any less important. We are so proud and honored to have people like Danielle writing about and fighting for Cervivor. – Tamika
Part of me hates to be writing this. Mostly because of the nonsensical war on women’s healthcare that the conservative right is waging once again via their attacks on Planned Parenthood. The last thing I want to do is make it sound like I’m trying to divide camps within the side for which I fight. But it’s important that I say this.
October sucks. It really does.
Within all its leaf changing, pumpkin-spiced glory, it is also 31 days of making people I care about feel discouraged.
Why? Because September is Gynecological Cancer Awareness Month and I would bet that 75 percent of the people reading this sentence had no idea that even existed. But everyone knows about October. Like my dad who puts his Christmas tree out the 1st of November, October pink starts to seep in sometime around the end of August.
You unfortunately can’t wrap the “below the belt” cancers in a neat pink ribbon. There’s uterine, ovarian and cervical, among others, and some 90,000 women are diagnosed every year. And to really fight for them? To raise even one tenth of the money that breast cancer awareness does? It means we have to talk about it. Really talk about it. And that is the last thing people want to do. Because it’s uncomfortable. Because it conjures up very specific imagery. Breast cancer survivors and battlers are to be revered by the media and society. Women with cancer in and around their reproductive system? Let’s sweep that quietly under the rug.
Why can’t my friend, a 13-year cervical cancer survivor who had a full hysterectomy at the age of 25 be commended for her struggle? Or my friend’s mother who beat unlikely odds for ovarian cancer not look embarrassed every time the subject comes up? For their fight to be heard in a sea of news outlets that don’t want to publish their stories in favor of another breast cancer advocate? These are the same outlets that refused to highlight the HPV connection to Farah Fawcett’s anal cancer because we can’t possibly discuss how people in the world might be having (gasp!) unprotected anal sex.
One particular media outlet has repeatedly reinforced this negative stigma with articles like “The Silent Shame of HPV,” containing anonymous stories about coping with it. Even worse, this more recent and incredibly tone deaf sexist piece “Iron Maiden Singer Vanquishes Sex Cancer.”
Recently xoJane published a fantastic article with The STD Project interviewing people who decided not to remain anonymous and instead confidently and intelligently spoke out about living with herpes — one of the most traditionally stigmatized health conditions of all. So you’re telling me that THE DAILY BEAST couldn’t find ONE person to speak to about HPV without condition of anonymity? I call bullshit. That and pure old fashioned laziness on the part of the writers. Because if you do even the lightest of Google searches you will find the Foundation for Women’s Cancer, ASHA, and Cervivor, all organizations with women willing to put a name and a face to a disease that the media would prefer to overlook. I emailed THE DAILY BEAST back when that first article published, calling them out on their negligence and their response was to say that people don’t want to talk about it because they are embarrassed. Dear editors, a title like “The Silent Shame of HPV” doesn’t help matter. You’re also incorrect because I’m not a journalist or a reporter and I can name 10 people off the top of my head who will talk about it because I’ve read their personal blogs online.
But I didn’t write this in the hopes of starting a “boo to breast cancer” campaign. (Someone else must have thought of that name for a 5K by now right?) I just find all the hoopla over one disease so limiting and overall not the best course of action. A brave talented woman who best sums up some of the trivialization that Pinktober and pinkwashing has brought to the breast cancer movement is writer and breast cancer survivor Diane Mapes. She has from diagnosis to recovery mapped out a very honest and decidedly un-pink description of what she has endured but it hasn’t prevented her from covering and reporting on all kinds of health issues in her informative and forthright manner. Her attitude is one from which many other journalists could learn.
My point is that the benefit that breast cancer receives from all the October attention is confirmation that people are listening. They have a massive rapt audience thrilled to root for them and raise them up and make them feel good about their battle. Any other organization trying to raise funds for medical research and educational awareness would kill for even a small percentage of the breast cancer reach.
Ovarian cancer accounts for more death than any other cancer of the female reproductive system and cervical cancer is, for the most part, preventable, so why all the secrecy? It’s 2015. Aren’t there enough media outlets for more people to share their stories for the greater good?
I’m glad October is over because I’ve learned to dread October every year. It’s a reminder of the world we live in, and that it abides by a news cycle that would rather regurgitate the same story over and over rather than truly educate and move forward. That we won’t collectively strive for a better discussion about our overall health because certain things are difficult to discuss. It’s better to leave them unsaid and stick to talking about boobs or nothing at all. Or, we choose to not give a significant platform to women who have gathered up the courage to shout their stories and we stand there, smile with false sympathy and ask, “But do you have a celebrity spokesperson like Angelina? No? Oh then your story? Your pain? It’s not clickable.”
I’m giving you a whole year to think about this. Next October? And all year round? I’m asking you to think outside the bra. Don’t pat yourself on the back for praising a woman for her strength in her health struggles if you’re not taking into account the whole woman.
After all the primary fight for feminism has always been getting the world to see women as more than just a pair of tits.
Advocacy. It’s thankless. It’s tiring. At times, it’s brutal. And I wouldn’t want it any other way.
Our work is necessary and it makes a difference. Without it, we wouldn’t be the first to go down in history as the first cure for cancer. Do you understand how important that is? Cancer cure. Every single thing we do individually takes us to a much bigger win collectively.
This weekend, I will speak at the National Race to End Women’s Cancer here in D.C., along with other women’s cancer champions, like Camille Grammer, on why our advocacy is so important. The Foundation for Women’s Cancer has been such a wonderful partner to Cervivor over the years and our work together can only continue to gain momentum as we fight to end all women’s cancers.
Here’s why we do it:
The Foundation for Women’s Cancer urges all women to:
You still have time to join the race or donate to the cause. Go to endwomenscancer.org for more information.
Whether you know it or not, every single thing we do matters. I can’t tell you how many times I have encouraged one of our Cervivor sisters to share her story. I’ve been working with women for years and I am so proud when I see them share their story and the impact that single story makes. I was recently invited to share my story at an event for the NHMA DC-Metro Region Medical Forum: Screening and Prevention of Cervical Cancer in Hispanic Women. While, I never have a problem sharing my story, I knew that this speaking opportunity would be better suited for their target audience – a Latina. I knew the perfect person and I knew she would be terrified but she said yes and she showed up! Watch as Vanessa shares her story publicly for the first time, and while doing so, she realized the importance of her voice in the cervical cancer space. -Tamika
When Patti asked me to write my story years ago I hesitated at first. But then, I figure, it would be ok because I could hide behind my computer. When Tamika asked me to tell my story in person surrounded by a group of professionals, I have to admit, I wanted to call out sick.
Around one year ago we did a video for Cervivor. Tamika was able to see first-hand how nervous I get when I’m in the spotlight. She didn’t give me much time to prepare last week for the NHMA DC-Metro Region Medical Forum: Screening and Prevention of Cervical Cancer in Hispanic Women. Knowing I would get nervous, I think she withheld that little detail that I would be a guest speaker. Well played, Tamika. Well played.
Before arriving at the event, I felt I was a cheater. Why I should I share my story? I never had cancer or went through chemotherapy. I didn’t loose my hair or the ability to have children. Why should I be there telling my story? And that’s when it dawned on me: I’m what they are fighting for.
For HPV to be caught on time and treated BEFORE becoming a cancer diagnosis. For my women to have a chance to live their lives after having HPV, and being able to have children. I was there to show those doctors they are fighting for us. They fought for ME. I was there to show them that their work is not in vain. I was one of those they saved.
While I sat there in the front row, I had the pleasure of listening to Dr. Ruchi Garg M.D. and Dr. Larry Maxwell, M.D. before my speech. Sitting there listening to them and the statistics of Cervical Cancer, I couldn’t help to think, “I’m what they are fighting for.”
Even tough I went through a four-year fight with HPV, I was able to have a child. My husband has a wife, my parents didn’t have to lose their child, and my child didn’t have to grow up without a mother because my HPV was caught on time and treated.
Afterward my speech I felt empowered, proud and extremely honored to be able to share my story. I learned that one story, my story, can truly make a difference.
We’re sharing Cervivor Jennie’s Cervivor School story this week. Since Cervivor School a month ago, Jennie has run with her new advocate roll. She, like me, will be at the National Race to End Women’s Cancer in DC on Nov. 8. I couldn’t be prouder of this Cervivor Sister.
I had a basic idea of what the school would be about, basing off Facebook posts and Cervivor’s website. I was so excited to learn more about this disease, and to meet a whole group of women who had been through what I had been through.
I flew out to San Diego on Wednesday, the day before Cervivor School started. I was VERY anxious. I checked into the hotel, The Horton Grand, in the historic Gas Lamp district of San Diego. The Horton Grand is old fashioned and very quaint. And two rooms are supposedly haunted, rooms 209 and 309. Several of us experienced some odd things during our stay, so I’m a believer!
Things kicked off Thursday evening with a welcome reception. I talked to a few ladies. As we talked and got to know each other, I found myself crying a lot. I was a little surprised by this. I’m over a year out from being declared NED (no evidence of disease), and I thought I had my emotions in check. But sharing my story with Melissa and listening to her story brought it right back up to the surface. I was told this was normal, that there is a lot of crying at Cervivor School, in a good, cathartic way. That was definitely true for me!
Friday’s focus was on telling our stories, and how to go about telling our stories in different situations. I’ve definitely been using Facebook for my own grassroots advocacy, but Friday’s speakers taught me how to be more effective.
It was so interesting to hear all these different stories. Even if we were staged the same, our treatments differed. And our feelings about things were the same about a lot of things. We split up into groups to answer and discuss questions posed to us, and we moved tables and teams for each new question, but the discussions were all very similar.
When I was first diagnosed with cervical cancer, I felt very alone. I found support through a group on Facebook, and have wound up making friendships with women from that group in real life. I have been lucky to have spent time with some of these women face to face. But I had never before been in a room with so many women who had been through what I’d been through, and really and truly GOT IT. It was wonderfully overwhelming, and I felt so blessed. I even found out that some of us at Cervivor School had mutual friends through the Facebook group.
We are all from different places, different socioeconomic statuses, different races, different religions. But we bonded so easily because we had all been touched by a horrific disease that has a stigma of shame attached to it. Cervivor School also helps to teach us how to advocate and knock down that stigma, so women will know that they are not alone.
I meet many strong women through this organization, and Erica Frazier Stum is no exception. While at Cervivor School two weeks ago in San Diego, Erica was fighting off fevers and was not feeling well overall and she never missed a beat.
She recently wrote about facing her own mortality, which is something many of you have faced or are facing right now. I hope you are as inspired by Erica’s words as I was.
I should precaution you, this isn’t like any post I’ve had before. This isn’t my normal “positive cancer post”. This is a raw, unfiltered, real post. This is the type of post most cancer patients keep neatly stored in his/her head and might not even bring out in a safe cancer support group. Yet, here it is. This will be hard to read if you know me personally. This might be hard to read if you don’t know me personally but continue to follow my story.
This post is hard to hear because it deals with mortality. It might bring up fears you have had for me that I have never really acknowledged. I don’t write this lightly. I know many of my readers, I am your wife, mother (once Wylee is old enough to read this story, if he chooses), daughter, sister, granddaughter, niece, cousin, co-worker, friend. I know this is scary. I know it is something no one wants to talk about. Yet, I need to talk about it.
Anyone who attended Cervivor School West last weekend will probably tell you that it changed their life. Words really cannot express the bonding that occurred. Most that attended likely left with new best friends for life.
We’ve all had different experiences, but loss is universal. If you weren’t able to attend Cervivor School in San Diego, we hope to see you around the country or around the globe in the near future.
We know we’ve been posting the Cervivor School West recap video like crazy, but it truly captures the feeling of the weekend. You can also find a photo gallery on Facebook and more videos of our speakers on Instagram.
We love you Cervivor Sisters!
The Graduates …
During Gynecologic Cancer Awareness Month we feel like it’s so important to talk about all GYN cancers. I couldn’t let this month end without talking about ovarian cancer. I’ve been trying to come up with the right words all week to describe my beautiful friend Carey who passed away this summer. I feel like I should honor her with the perfect words and they just aren’t coming to me, perhaps I’m just too sad that she’s not here.
I miss her. Carey was a wonderful Mom to her two boys. She loved her sorority. She was one of the fiercest ovarian cancer advocates I knew and now she’s gone. I hate that. I hate cancer. What I love is that Carey was a team player, always supportive and always sharing our Cervivor message. She was witty, smart and a girl’s girl.
I’m honoring Carey the best way I know how. By sharing her story and painting my toes teal. Please take a moment to learn more about my amazing friend Carey and her organization, Teal Toes. It’s not too late to paint your toes teal!
The following was taken, in part, from Teal Toes.
Carey Elizabeth Fitzmaurice, beloved wife, mother, daughter, sister, and friend, died on June 15, 2015, at her home in Bethesda, Maryland, with her family by her side. She had ovarian cancer. Carey was the founder, president and animating spirit of Teal Toes, a nonprofit organization dedicated to raising awareness of ovarian cancer and its symptoms.
Carey was diagnosed with Stage 3 ovarian cancer in 2006. In the years that followed, she pursued her vision of using fun—painting toenails teal — for the serious purpose of educating women and men to the subtle signs of ovarian cancer. (Teal is the color for ovarian cancer awareness.) Carey founded Teal Toes, a nonprofit organization dedicated to raising awareness of ovarian cancer. Teal Toes creates a way for survivors and friends alike to show solidarity and support for ovarian cancer survivors, and to use an unusual color to spark conversations about symptom awareness.
Teal Toes has reached tens of thousands of people nationally and internationally, distributing more than 400,000 symptom awareness cards since its inception. The Ovarian Cancer National Alliance awarded Carey the Cindy Melancon Spirit Award for 2015 in honor of her courage, passion, and tireless work on behalf of the ovarian cancer community. Teal Toes has become embedded in the national conversation about ovarian cancer.
Carey lived life to the fullest, before and after her diagnosis. She loved her red Mustang convertible, the Beatles, the Carolina Tar Heels, mint chocolate chip ice cream, poodles and much more. She was an avid traveler, introducing her sons, Elijah and Sam, to diverse cultures through frequent trips around the world. Most of all, Carey was an extraordinary mother to her sons, and wife to the love of her life, her husband Andrew.
Near the end of her life, she wrote: “All you need is love. It has been true for me. I didn’t have beauty, fame, success or other things like that, but I did have the love of family and friends that made me what I was and sustained me when things were rough. Please continue to apply that love to each other. And, in the end, the love you take is equal to the love you make.”