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!
When I was diagnosed with cervical cancer, I never planned on becoming a patient advocate. In fact, it was the furthest thing from my mind.
I was 25, single, childless and scared. This was 2001 and no one was really talking about HPV. I had never even heard of it and I pride myself with being “in the know”. Hell, I was even working on a national award winning health show and it wasn’t a topic that we discussed.
As I healed from my surgery and prepared for radiation and chemo I still never thought about sharing my story. It’s ironic, because as a television producer that’s what I am – a glorified story teller. But this wasn’t a story that I wanted to share.
I was ashamed and just wanted to put it all behind me.
So I did. Or at least I thought I did. Slowly, I began pouring myself back into my work and started the grind of networking. I went back to being that social butterfly that my friends and family had always loved.
But something was different. I was different. My life had forever been changed. As much as I tried to put the pieces of my cancer riddled life back together, it just didn’t happen. The pieces no longer matched up perfectly. I didn’t fit into my own world. My energy level wasn’t the same and I thought about my experience constantly. I wondered why no one was talking about cervical cancer.
It took me three years to accept that I had cancer and it had rocked my perfectly planned world. I was one of those people who had everything planned out and cancer was not in the plans – when is it ever? But it happened and thankfully I survived — so I had to live — really live.
And so I did. Part of living my best life after cancer was doing something for those that would come after me. Like helping them to avoid the isolation that I felt as a woman with cervical cancer.
The more involved I became in the cancer community, the more the pieces of my life began to fit back together – but some of them took a new form.
When I look at the cervical cancer community, I see only a handful of women sharing their stories. I always wonder why more women aren’t speaking up. Is it because of the stigma of HPV? A lack of time? Or do they think that their voice doesn’t matter?
Whatever the reason; we need your voices.
Tell me: What’s holding you back from sharing your story? We need patient advocates to help combat this disease. We can’t leave it to the clinicians and researchers and Congress. We must have a seat at the table. We complete the puzzle to eradicating this disease. We are the messengers. Will you join me?
There are two ways you can help:
1) Take this survey and let us know what you need and expect from our community.
2) Join us at Cervivor School this coming January in Austin, TX.
I won’t stop until we put an end to this cancer – because together, I know that we can.
In this month of November, we celebrate Thanksgiving and all of the things we are thankful for. I am so thankful for the time I had with my mother and that I could take care of her while she suffered from cervical cancer.
My mother was a Catholic school teacher at our local church. She was also very involved in our church community. She volunteered for so many things, and she made my brothers and I volunteer too. Because we were children, at first we did not want to volunteer, but after a while it became natural to us to become involved in our community. My mother showed us that to give our time, and labor to others was an expression of gratitude for our blessings.
I learned some of life’s hardest lessons when my mother was diagnosed with cervical cancer. She was first diagnosed when I was in high school. Although she had treatment, the cancer came back aggressively two years later. My great aunt took care of my mother. But when my aunt fell asleep, my mother would call for me to help her. I was young, and it was incredibly painful to take care of my mother and see her suffer. I had to do things that none of my friends could relate to. It was hard for me to understand. Although she let my aunt sleep, when she needed something she woke me up. I developed a lot of inner strength during that time. I relied on the love I had for my mother to carry me through those sleep interrupted nights. I remember one evening when she was in pain we held hands and listened to the song “I feel like going on.” We listened to that song so many times that eventually we were both singing it. We both felt encouraged. I felt like I had the strength to take care of her, and she felt like she had the strength to live for her family. Unfortunately, my mother succumbed to cervical cancer and died on March 31, 1996.
My life without my mother has been a tribute to her and what she taught me about helping others. Many times in my life there have been things that are rough, and I push through them. Many times I want to give up. Sometimes I am having a bad day, and someone will need my help and I want to say no. But I think about that day, when I held my mother’s hand and sang I feel like going on.
When I learned about Cervivor, and how I could make sure that people knew about cervical cancer, I felt my mother pushing me to be involved again. Before Cervivor, I had so much unresolved grief and unanswered questions about what really happened to my mother. Cervivor help me settle some things within myself, and fulfill the need I have for service to honor my mom.
The men and women who are part of Cervivor are phenomenal. I am so thankful for them and the love they have given me. Cervivor has once again, made me believe that I can go on. I can go on and fight cervical cancer.
By Lillian Walker Shelton
November is Native American Heritage Month. Cervical cancer affects American Indian women 2 to 5 times more often than women from other racial groups.
What follows is a personal story of cervical cancer survival from Beverly Bushyhead, MA, MPA, of the Eastern Band of Cherokee Indians.
How I Learned to Live for Myself
By Beverly Bushyhead, MA, MPA
When I learned at age 40 that I had stage III B cervical cancer, it sounded like a death sentence. I remember thinking, My children are too young to be left alone! Because the 10 cm tumor on my cervix was inoperable, I would receive lots of chemotherapy and radiation. The only survivor with similar staging and treatment to mine wouldn’t talk about it—the experience had been too horrible.
The survivor was right. It was horrible. At first, weekly chemotherapy and daily radiation were easily managed. But weakness and radiation burns caught up to me—showers became unbearably painful. Even baths hurt terribly, and black burned skin would float to the surface. I would sit in the water and cry. I apologized to my body. I thanked it for all it had done: carrying my children through pregnancy, feeding them and always serving me well. One day, I realized that my body was me—it wasn’t something separate going through this. All of me was experiencing this.
Immediately, I went into a series of traditional ceremonies with my community. During sweats, I pictured the tumor melting. My children sang healing songs. But I didn’t pray for instant healing—I prayed for strength and clarity. At the sun dance, where prayers were said for me, I received items like eagle plumes and prayer ties. The water ceremony was also very powerful—and the hospital showed respect for it. I can never forget the amazing change the ceremony brought to the lymph node surgery I had less than an hour later. My traditions are everything to me, and they were what I held onto during this time.
Some people avoided me. One relative had three checkups because she feared she could catch cancer from me! There was judgment and whispering. Folks didn’t know what to do. Others helped, though, donating food and time. Still, I drove myself to every radiation treatment and most chemotherapy treatments. It was exhausting and lonely.
Some people in the community felt I should refuse chemotherapy and radiation treatments and use only traditional, spiritual practices. Others thought I should ask for a miracle. Some said traditions wouldn’t work if I chose medical treatments. I was terrified to die. I had to do what I thought was best.
My final treatments involved the surgical implantation of radioactive material and the insertion of seven needles filled with iridium into my sensitive, burned skin. Radiation to the max. Lead panels were placed around my hospital bed, and radiation was measured every 30 minutes. I awoke with a button in my hand to deliver morphine, a governor preventing overdosing. It was comforting to push that button—the pain was excruciating. I was devastated to learn that the first of the two operations had perforated my uterus and would have to be repeated the next morning.
It hurt to stretch. It hurt to move. It hurt to breathe deeply. So I tried to lie very still. The sun shone through the window. I could feel the warmth on my arm. I was grateful for the distraction from the pain. I was completely enveloped in the growing warmth of the sunlight. I let my mind linger on how it felt. I closed my eyes. In that moment I was completely happy. It was a startling revelation: If I could be happy in the middle of a horrific experience, then happiness was a choice I could focus on.
Initially, I had been going through cancer treatment for my children—my son, age 13, and twin daughters, who were 9. One of my daughters said in the beginning that she’d kill herself if I died, so I’d started a support group for kids with a parent experiencing cancer to provide coping skills and information. But after many personal, humbling and painful parts of going through treatment, there came a time when I was doing it for me. I wanted to live! And no matter how it turned out, I was here now.
My sweet children ate meals by my bedside. Even after I returned to bed and was sleeping, it was the most wonderful joy to hear them talking and laughing near me. I always wanted to be with them if I could. As I recovered, I finished my bachelor’s degree because I couldn’t die without finishing it! Then, over the next 5 years, I went on to earn two master’s degrees. Now, whatever’s on my list, will not be ignored.
My children, now 24 and 20, are grown up. I am grateful to see them as amazing and wonderful adults. It is an honor and privilege to be their mother.
I continue to deal with effects of all that radiation. Perhaps it’s the price for survival. But I’ve learned to love myself. And I learned how strong I am.
American Indians say a people are not defeated until the women’s hearts are on the ground. Well, I am determined to sing my song until my last breath.
Her name was Kelly and she was 33 years old and she died of cervical cancer. The truth is, I would be sad any day that she died, but there is something about her leaving this world on a day where we are supposed to reduce stigma and dispel myths about cancer that truly makes this even more difficult – especially when talking about cervical cancer and its link to the human papillomavirus.
I was first introduced to Kelly in December of 2011 via email through another cervical cancer advocate named Michelle. Kelly had just been diagnosed with cervical cancer and was meeting with her oncologist the next day to work out her treatment plan. Naturally, she reached out to fellow cervical cancer survivors for support. We all rallied around Kelly and supported her; the best we could, from our various parts of the country. Kelly and I mostly kept in touch via social media and I kept up with her journey through her blog, “One Big Exhale.” I enjoyed her posts. She was so witty and full of hope, but what I most appreciated was her openness about the days where she felt more “blah” than “rah.” She was honest. She was raw. She was real. Kelly was a girl, just living her life and cancer came in. It’s true – cancer doesn’t discriminate. It just doesn’t. You would think after all of the years of making warriors out of cancer patients that being diagnosed would not be so scary – that with so much support, it would be easier. But it isn’t. There is no training or preparation for those words “You have cancer.” The first thing you think is that you are going to die and then once you pick up the broken pieces you fight like hell to live. You fight even when there are no positive outcomes guaranteed. As Kelly would say, “What else are you going to do?”
August 2012 in Boston I was able to finally meet Kelly in person at the ten-year anniversary concert for Pop Smear. She was everything I expected her to be and more. The first thing I noticed was her mega- watt smile. The kind of smile that could light up a dark room. The kind of smile that was so infectious that it would make you smile on your saddest day. That was Kelly Pozzoli.
That night after the concert I got to spend quality time with Kelly back at the hotel. We were both being interviewed for Someone You Love: The HPV Epidemic, the award-winning documentary about the link between cervical cancer and the HPV virus. I needed to do a quick update interview and Kelly sat on the bed watching and interjecting – she was all passion. It was in those very late hours in that Boston hotel that I really got a chance to see Kelly. Not Kelly the girl with cancer but just Kelly and she made me love her. She was the type of girl you always wanted in your corner as a friend. She truly was the girl in her blog.
The last time I saw Kelly was a few hours later when we were both dropped off at the airport. I gave her a huge hug. I am sure it was too much for her frail body but I wanted and needed it. I never thought that would be the last time that I would see her. Never. Perhaps I am too much of an optimist. I thought Kelly would pull through. That she would make it. She would be the reason that people got “it” – our message. But in a tragic totally unexpected way, she will – just not in the way that I think we all had envisioned.
Over the next few months, Kelly was in and out of the hospital but her resilience and humor never waned.
Kelly’s FB Status Update (September 25, 2013): Who’s leaving the ICU and going back up to a “normal” hospital room?? This girl!!! (Cue marching band, confetti, and balloon drop)
Kelly was still fighting but also doing her best to put her life back in order and make a difference. She was the first guest on the Jeff Probst show and America fell in love with her. Viewers got a chance to see her living her life in the wake of numerous surgeries and a clinical trial. Kelly was a regular feature on the show and they loved her.
Most of my interactions with Kelly were via email or Facebook. I followed her cancer journey, prayed for her and knew that Kelly would join our merry band of Cervivors to advocate against a disease that we can now prevent. But she would not be joining us.
Kelly died on World Cancer Day, February 4th 2014. She wasn’t supposed to die. She was supposed to live. She was supposed to make it. She was supposed to show her battle scars, tell her story, be an advocate, have babies, and go back to teaching trapeze. But she won’t. On November 19th, 2013 Kelly’s Facebook update wasn’t filled with her humor and positivity that we all had come to expect. Instead, it was direct, to the point and final.
Kelly’s FB Status Update (November 19, 2013): I had scans on Nov 8. They weren’t clear. At this point there’s nothing (treatment wise) that can be done.
Everyone rallied around Kelly and offered up support and prayers. Holistic treatments. Inspiring quotes, songs and videos. But true to her words, there was nothing that could be done and she died three months later.
Kelly is gone. She is no longer suffering and her memory lives on through her family, friends and the film, “Someone You Love: The HPV Epidemic”. The film follows Kelly’s cancer journey from diagnosis to her final moments. This film is an emotional rollercoaster with exceptional highs and lows. The film will be screening for free in Kelly’s hometown at the St. Louis International Film Festival on Friday, November 21st at 5pm at the Tivoli Theater. This film is Kelly’s living legacy. Honor her by seeing it and sharing her message.
We are pleased to announce that registration for Cervivor School 2015 in Austin, TX is now open. We have 50 spots and would love to see you there. We have put a lot of heart and soul into this event and are excited to share this experience with you. Please let us know if you have any questions.
Throughout September, we worked hard to increase awareness around HPV and cervical cancer. From social media campaigns to radio and television appearances to Cervivor School and the NYC Pap Rally and Run, our efforts have been getting more women and men involved in the cause.
Our first Booster campaign, where Cervivor t-shirts were available for sale for $20, helped raise over $500 to support Cervivor. We also ran a social media campaign across Facebook, Twitter and Instagram where a series of infographics highlighted important facts about HPV, cervical cancer and women’s health. You can help share these facts with your friends and followers – use the hashtags #GCAM, #gyncsm, and #preventcc to find and share these facts.
The month culminated with a weekend in New York City. On Saturday, September 27th, over 100 women, men and children participated in the PAP Rally and Run, Cervivor’s signature 5k walk and run. Jacque Reid, host of New York Live on NBC emceed the event, and over $10,000 was raised to help end cervical cancer.
After the PAP Rally and Run, graduates of the January 2014 Cervivor School were invited to a screening of the documentary “Someone You Love: The HPV Epidemic.” This film follows the stories of five women whose lives were changed forever by cervical cancer. Cervivor’s founder, Tamika Felder, is one of the women featured in the film. The stories of these women reflected those of the women watching. The film stirred up strong emotions: the heartbreak and loss that can accompany a battle with cancer, as well as the strength, love and joy that survival can bring. The team at Cervivor will continue to provide updates about the film and how you can arrange a screening in your city.
Be on the lookout for ongoing projects, as well as some exciting new initiatives in January 2015, Cervical Cancer Awareness Month! For more information on how you can be a part of Cervivor, please visit www.Cervivor.org.
Every year from September 15th through October 15th, Americans celebrate National Hispanic Heritage month. During this time, America honors the cultures and contributions of Hispanic Americans. At Cervivor, we celebrate the lives of the amazing Latinas who are part of our Cervivor family, whether they are survivors, volunteers, friends or caregivers. It’s so important to take time during this celebration to educate women about HPV and cervical cancer because Latinas have the highest rates of cervical cancer out of all groups of women, and they have the second highest mortality rate after African American women.
The National Latina Institute for Reproductive Health cites lack of screening along with screening accessibility barriers as the main causes of higher incidence rates. Jessica Gonzalez-Rojas, executive director for the National Latina Institute for Reproductive health, says, “It’s not that the sexual behavior is any different. They’re just not getting the care they need in a timely manner.”
HPV, the virus that causes virtually all cervical cancers, affects around 70% of Americans. But with regular screening and medical care, cervical cancer can be prevented! Six out of 10 cervical cancer diagnoses occur in women who have never had a Pap smear, or who have not had a Pap smear in the last 5 years.
Patti Murillo-Casa was diagnosed with cervical cancer in November 2008, after she had gone 3 years without having a Pap smear. After her diagnosis, she was scared, ashamed and worried about what her husband might think. “That’s the myth and stigma the disease has,” Murillo-Casa says. “This disease isn’t because you’re promiscuous. If you’re sexually active, you’re going to get the virus. You have to go to the doctor. I tell women they don’t have to go through what I went through.” Patti now works hard as part of Cervivor to help educate and raise awareness in Latina communities.
Cervivor, along with partners such as the National Latina Institute for Reproductive Health, is continuing to fight against the stigma of HPV and encourage women to get screened regularly. The more information Latina communities have about HPV and cervical cancer, the faster we can erase the stigma around HPV, increase the rate of screening and decrease the incidence rate of cervical cancer. Working together, we can fight to increase accessibility to health care for all women, and break down the barriers that prevent women from getting the care they need.
Help raise awareness about how HPV and cervical cancer affect Latina women.
Today is the last day of Gynecologic Cancer Awareness month and it was so great to end it by sharing my story this morning on the Tom Joyner Morning Show. Jacque Reid of TJMS and Single and Living Fab has a phenomenal segment called, “Inside Her Story” and boy, did we go INSIDE MY STORY…my coochie story to be exact. I’ve been through so many things on my journey with cancer, but the one thing that I’ve learned is it is imperative to share so that we can prevent cervical cancer. If you missed the segment, check it out here.
We got in a lot of information in a short period of time and I just wanted to share some additional information, because so many of your have reached out to me via social media.
Here are the top things you should know:
I want women of color to know that we develop cervical cancer more often than white women and we are more likely to die. We have to change this health disparity by getting screened. No one likes to get a pelvic exam, but we have to do it.
Uninsured? We’ve got you covered. Check out this link.
Don’t hesitate, call today!
In recognition of her tireless advocacy for women’s health, our founder Tamika Felder has been nominated for The Root 100 People’s Choice Award.
This is a tremendous honor and an amazing opportunity to bring awareness to our cause!
Please support Tamika’s nomination by visiting the The Root 100 site and clicking “vote for Tamika” under her photo.
You can vote every day until October 10 and we encourage you to! Thank you for your support!
“I heard ‘cancer’ and heard nothing else…on that day I lost everything I thought that made me a woman.”
We’ve heard it many times, but it never gets old. Tamika’s personal story will stop you in your tracks.
Thank you DC Breakdown for bringing awareness to this issue.
© 2013 Tamika & Friends, Inc.
Thanks to Roche Diagnostics Corporation for support of Cervivor