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.

A Colostomate in Honduras during COVID-19

Honduras is a beautiful, tropical country located in the center of Central America. Honduras boasts of beautiful beaches, forests, mountains and people.  I love living in Honduras, just going anywhere and being able to see the mountain ranges and the skies are worth it.

Nevertheless, statistics show that 991 women are diagnosed with cervical cancer each year in Honduras. Cervical cancer is the first cause of death in women next to breast cancer. Fortunately, in 2016, the Honduran government approved the HPV vaccine for girls. Private medical facilities provide the vaccine for the rest of the population.

When I was diagnosed with cervical cancer, I did not know anything about it. I was the first person that I knew that had this type of cancer. After cervical treatment I developed a rectovaginal fistula. One more thing I did not know existed. To help me heal or have a better quality of life, my following treatment was getting a temporary colostomy. Another first in my life. I knew little about ostomies; I met a person who had an ostomy but he never spoke of it.

A colostomy is an opening in the large intestine bringing the end of the colon through an incision to the abdominal wall. That was the first thing I learned about a colostomy. My doctor was extremely helpful in giving me materials and support, but I felt so lost. I went online to look for information or anyone in Honduras with a colostomy. I did not find a person to talk to about it. Google and other websites were my go-to for information and tips. 

When surgery came and I had to order my ostomy bags, I had no idea what I was doing. I called hospitals in my country and they said we have this type and that is it.  So, I ordered from Amazon, and bought what I thought might be helpful and easier for me to accept (I was in denial of my ostomy up to the day after my surgery when I felt the relief).

Buying supplies in Honduras is not easy, in fact you call medical suppliers and they do not know what you are asking them for. I’ve only found one supplier that understands ostomies but does not provide the specific brand I use. The brand I use in not available in Honduras. I am very adamant about my ostomy supplies; I want to be comfortable and feel safe. It took me a year to find the perfect match with my stoma and my colostomy bag. I buy online in the U.S. and have it sent to me via a courier service. On a regular basis it takes three weeks for me to get supplies to my house. I always plan ahead and have enough supplies for two months at any given time. 

When COVID-19 made its way to us, Honduras was not ready for anything that came after March. Everything just seemed to be chaos as our country started closing up. With that being said, when quarantine came, I had just received a shipment of my supplies and in mid-April I ordered more, the usual amount, I wasn’t worried, I had stocked up. Then June came and I only had supplies for the first week and no news of my order. Countless emails and calls, and I still had not received anything. I ordered more, just in case, hoping this new order would get here sooner. I called and asked countless times for my orders. First, they got to my courier late, then customs took months in letting them through. I hated listening to this response repeatedly: “Your package is here in Honduras, it’s in Customs, and it has not been released yet.” I was lucky that a medical supplier here had supplies, but since they are not what worked best I went through them quickly. It took my ostomy bags four months to get here, and the order came incomplete. I am still waiting for the next shipment and completion of the first. 

Anxiety hit me hard in June and July. I was so mad that this was happening. I woke up one day crying, because the bags I was using were causing an allergic reaction to my skin. That same day, as I was moping all over the place and making everyone miserable, I remembered that I was still here. Even though this was awful and infuriating, I was still here. I allowed myself to grovel for one day, let it out, release. The next day I took a long bagless shower, and placed a new bag on, and even though the rash was still there, I was going to go through it and wait for my supplies to get here, I had to be positive. When they finally did get here, I cried again (blame it on the menopause). It was like opening a birthday present!

Being an ostomate in a country where it is considered a taboo and there is little information and supplies, is awfully hard. I am incredibly lucky that I have a good relationship with my doctors, and when I have issues, I can text them and they’ll get back to me quickly. Having this support is extremely helpful. But sometimes you need support from someone who understands physically and emotionally what you are going through. It took me a little over a year to meet Hondurans with ostomies. Just knowing that there are people out there with an ostomy and that you are not alone is helpful. I have not personally met them but being open to share your story helps others open to share theirs.  Using social media helps a whole bunch.

My ostomy came to me due to cervical cancer treatment. I’ve named my stoma Jeepers, because he creeped up on me. I am a proud ostomate, I’ve learned to accept my ostomy and to talk about it openly. It should not be a taboo or something someone cannot discuss.

Karla Chavez is from Honduras and she is a civil engineer and amigurumi enthusiast. Karla is a 3-year cervical and thyroid cancer survivor and a proud ostomate. She is a Cervivor Ambassador, a 2019 Cervivor School graduate and is a key support to our growing Cervivor Espanol community.