A Decade of Advocacy

It is surreal for me to think that I have been an advocate and sharing my story of cervical cancer for ten years.  I say this because after treatment, I just wanted to stay quiet.  Not talk about the whole ordeal and just move forward.

I am sure many survivors feel this way after treatment, but I have also met many that are very vocal about every single step of their journey.  I was not one of them.  I do not have any documentation about my journey.  The only thing I have are 35 hospital bracelets for each time I had a radiation treatment.  

It wasn’t until four months after treatment that my brother insisted on doing a cervical cancer walk. A coincidence? Perhaps. I will never know.  At first, I did not want to do it, but he insisted so much that I gave in. 

Walk to Beat the Clock – NYC

On September 19, 2009, at the Walk to Beat the Clock, I met Tamika Felder, a cervical cancer survivor and the founder of Tamika and Friends, which later rebranded to Cervivor.  That day I met other survivors as well.  They were sharing their cervical cancer stories.  These stories were similar to mine and told with such heart, passion and confidence.

First time meeting Tamika

I was in awe.  I was inspired and motivated but most importantly I did not feel alone anymore.  At that moment, I made a decision that I wanted to join the cause and the movement. I wanted to share my own story and let other women know that my journey did not have to be theirs and that they were not alone. 

My mission became even clearer when Tamika invited me to a Latino Summit in Washington D.C. It was there that I learned the statistics between cervical cancer and Latinas

To be able to share my own story I needed to be authentic, open and be able to deliver it with an open heart.  Tamika said to me at the very beginning “always tell your story from your heart, because when it comes from the heart people listen.” I have applied this statement to the hundreds of times I have told my story and I still do.  

First radio interview

I still remember the first time I told my story. It was March 28, 2010 and it was a radio interview in Spanish for 95.9 FM El Poder Latino (The Latino Power).  I was so nervous, my heart was pounding, but I remembered what Tamika had told me to do and I spoke from the heart.

On January 25, 2014, I attended the first Cervivor School, which took place in New York City.  Cervivor School is a life-changing event. It is empowering, informational, educational and inspirational.  We also get to share our views, our stories, our concerns, our goals, our obstacles and our strengths.  It is so important that survivors who become advocates are educated and informed with the latest facts to be able to bring the proper message forward. 

It has been a journey of highs and lows.  The reality of things is that not everyone is going to be interested in listening to your story or anything you have to say and this had to be OK with me. I did not let this discourage me.  As advocates, we set to save the world. Unfortunately, I came to the realization that I cannot save the world, I cannot even save New York City, where I reside, but if my message gets to one person in the crowd, I have completed my mission. 

Through the years, there have been many ways I have advocated: free cervical cancer screening events, health fairs and interviews with different media outlets. Not every presentation or interview has been perfect, but I can honestly say that I never did it for the accolades.  I do it to educate women that need to know that this cancer is preventable and treatable if found early.  We lose over 4000 women every year in the United States alone. These women were someone’s wife, aunt, daughter, mother, grandmother and their lives matter.

I am very proud of the work I do as an advocate and I am humbled to say that my advocacy work has been recognized.  

New York City Proclamation

All the work has been important to me, but I hold two events dear to my heart. The first is the proclamation for my advocacy, given to me by the New York City Council on January 10, 2015. This was one of the proudest moments of my advocacy world. 

Lasker Awards with Dr. Lowy

The other was being invited to the Lasker Awards  in 2017 where I met Dr. Douglas R. Lowy and Dr. John T. Schiller, the two scientists that were the recipients of that year’s  award for their technological advances enabling the development of the human papillomavirus (HPV) vaccine which prevents cervical cancer and other tumors.  So proud that my story was featured in their submitted video

My advocacy journey has brought me full circle.  Today I lead a survivor fitness group as the Cervivor Wellness Instructor.  Survivor Slimdown is a Facebook group open to ALL CANCER SURVIVORS.  It is a space for inspiration, motivation and accountability as we learn to navigate our way to health after a cancer diagnosis.

I must say that the best part of my advocacy has been meeting my wonderful and inspirational Cervivor sisters.  Every single one of them has a story that matters.  Stories that show resilience, courage and strength.  Unfortunately, many of them are no longer here, but we keep them in our hearts.  We honor them by continuing to share their stories and legacies because they did make a difference. 

We all bond with the same mission to end cervical cancer and to make our generation the last one to fight this disease.

Advocacy in action!

My heartfelt thanks to Tamika Felder and the Cervivor organization for giving me a voice and a platform to share my story. This organization has supported me on my way back.  They have also supported so many other women fighting and surviving this disease. I will never feel alone again.

Patti is a Cervivor Ambassador and Cervivor’s Wellness Instructor who manages our Survivor Slimdown Facebook group. She is a retired NYPD police officer and an 11 year cervical cancer survivor. She resides in NYC with her husband of 21 years where she’s a Group Fitness Instructor and a Health Advocate.

Surviving Cervical Cancer: Tips from Our Community

We develop tools to navigate through life’s rough waters but when you’re on the receiving end of a cervical cancer diagnosis, it’s like your toolbox is suddenly empty.

Something that almost everyone in our Cervivor community has said is that no one ever wants to be in a ‘cancer club’ but when you do find your community, things feel less scary. Now you can share coping and wellness tools, help others and find support from those who ‘get it’.

To provide that support, our community is sharing their tips for coping through a cancer diagnosis.

Keep a box of cards/letters/hospital bracelets/etc. This can be a vital way of processing through your emotions every now and again. You can reflect on the support you received and everything you survived. ~ Morgan N.

During treatment, sleep when you’re tired and eat when you’re hungry. Keeping your body well rested and nourished is a priority. ~Emily H.

I had to learn to say, “NO!” and to take time for myself to rest. Morning and evening meditation really helped me and art is my escape from it all. ~ Tasha B.

Yoga and meditation and eating clean! Meditation helped me focus on one thing. Eating clean gives me advantage on fighting back with nutrient vitamins to restore and help my body and digestive system. ~ Re’gina P.

I schedule time to rest. Be it meditation, reading, sitting in the sun, even aimlessly scrolling – just to be still for 30 mins or 1 hour during the day. I say I’m busy. Busy resting. ~ Samantha R.

Not only are our bodies going through so much with side effects, treatments and surgeries but cancer takes a toll on our spirit and mental health. Taking time to rest and reset, however that looks to you, is so important. Maybe this means reaching out and asking for help. Maybe it’s calling that friend who always knows how to make you laugh, or maybe it’s lying in bed and just crying. Creating space for ourselves is healing. Self-care comes in many forms and none of it is selfish.

Getting outside, even if it was just to walk to the mail box or sitting in my backyard. A little vitamin D always makes me feel better. ~ Carol L.

For me, it’s always been; yoga, meditation, walking/hiking, a religious sleep schedule, cooking/baking, time with friends, music, and quiet time reading. ~ Tracy C.

Listen to your body and resting whenever needed. This was very hard for me because I was so used to go, go, go but it’s so important to let your body rest and repair. ~ Gracie C.

There was overwhelming gratitude from survivors for their medical providers. From amazing Gynocological Oncology teams, Infusion and Radiation teams, to PA’s, RN’s and everyone who works hard to keep us alive to live. When you have a good oncology team, it’s a game changer.

Eating healthy food and sessions with my Oncology Physical Therapist to help with hip pain, regular varied movement, and journaling. ~ Christina B.

Finding my ‘safe spot’ to mentally escape for a bit. Learning to let others take care of me. Coloring and enjoying nature. I’m very tactical and the ears on my dog help soothe me.  ~ Karen N.

I learned to create boundaries from negative things/people. Using no, for my own wellbeing is essential. ~ Lorie W.

Another common thread we heard from you was the support you received from family and friends. Being surrounded and supported by people who put care into action means so much. Whether this comes in the form of prayer circles, meals being delivered or being that person holding our hand, all are great acts of loving kindness. And who doesn’t need more of that?

As cervical cancer patients, survivors and thrivers we have a special community. One that feels tight-knit because we know that through our voices we have the power to ignite a conversation and to help others. We know that our stories can have an impact on someone else’s life. That, through those stories, ending cervical cancer can be reached.

What are some tips you used to get through your diagnosis or life-changing event? How does wellness play a part in survival today?