We Told Cancer to Go Fly a Kite!

On Saturday, the cancer community came together to share a unified message: Cancer Can Go Fly a Kite! And it was nothing short of amazing! There were so many beautiful photos, videos, and virtual kites shared. It reminded us of one very important message, we are always stronger together. 

Read the Kickoff Message from Our Founder, Tamika Felder.

Cancer Can Go Fly a Kite!

Cancer Screenings: We want others to understand, the global pandemic put a dramatic halt on cancer screening rates and cancer diagnoses. Though rates are climbing back up, they are still not at pre-pandemic levels and it’s a problem. We know that prevention and early detection saves lives.

Have you scheduled your cancer screenings yet? Stay up-to-date on age and risk appropriate guidelines by speaking with your doctor and utilizing the American Cancer Society’s Quick Reference Guide.

Caregivers: Support those who support you. Caregivers deal with so much when a loved one is diagnosed with cancer that they often forget they need support too. We are so grateful for the caregivers in our community.

Community: Cancer can feel isolating and it can make you feel lonely but when you find your community, it can make things feel less scary. The Fort Independence Warriors in New York know all about the word community. They showed up loud and proud for #CCGFAK.

Cancer Disparities: Despite all of the improvements in technology and treatment, cancer disparities are still happening. We will continue to raise awareness on cancer disparities and share our stories to make a difference.

Global Outreach: Cancer impacts us all across the globe. We have patient advocates speaking up in Kenya, Honduras, and Saint Lucia (and many more countries) because…

Cancer remains to be the third leading cause of death after infectious and cardiovascular diseases in Kenya. Milicent and Sally use their voices to make a difference.

“So that everyone knows the importance of HPV vaccination. And to our Kenyan government to know the importance of cancer survivors – when survivors share their journey they give hope to newly diagnosed patients.” – Milicent, Kenya

“Cancer made me lose some parts of my body. Let it go fly a kite. #MakingCancerPay” – Sally, Kenya

And to change the statistics for the 56,000 women in Latin America and the Caribbean that are diagnosed with cervical cancer every year like Kadiana and Karla.

“Cancer has changed my life physically, emotionally and mentally. Although I’ve learnt to accept that I am fat and forgetful with stiff joints and many scars, cancer can go fly a kite because I am also more courageous, resilient and have a profound respect for life.” – Kadiana, Saint Lucia

“I want everyone to be able to enjoy each day, people, pets, and life. Cancer can go fly a kite and let us all live freely and healthy.” – Karla, Honduras

Survivorship: The good news is cancer deaths have declined dramatically but survivorship and quality of life matters. The number of cancer survivors is expected to increase by 31%, to 20.3 million, by 2026 and it is expected that 2 out of 3 Americans diagnosed with cancer will live at least 5 years after diagnosis.

Clinical Trials: Educating others about clinical trials because only 5% of adults with cancer will participate in them. Clinical trials are a great way to help others and gain access to the latest treatment options before they are available to everyone else.

Prevention Tips: We know prevention and early detection saves lives but what can we do to help prevent cancer? We gathered a list of helpful tips to share!

To Honor: We took the time to remember and honor those in our community who are no longer able to tell their stories. We carry their memories with us every day and find new ways to honor them.

Bernie Brennan flew a kite a kite in Ireland for her daughter, Laura Brennan. Laura was a Cervivor Ambassador and sadly, died from cervical cancer in 2019. While she was alive, she served as a Cervivor Ambassador and advocated for HPV vaccination and cancer prevention. During her short time with us, Laura made a massive impact to increase HPV vaccinations. We thank the Brennan family for sharing this day to honor Laura.

Thank You

A huge thank you to Rubius Therapeutics for sponsoring our Cancer Can Go Fly a Kite event and for continuing to find new and improved treatments for HPV-related cancers. To find out more, visit their website: https://rubiustrials.com/hpv-cancers/.

Juggling Gratitude and Luck

I was diagnosed with Stage II cerivcal adenocarcinoma just before Christmas in 2015, caused by HPV 16. Lots of people remember the date they heard those words. I don’t. I remember the fear, the disbelief, the questions, the pounding feeling in my head, and the instinct to run, far, far away. Just keep running away so this would never catch me.

October 5 will mark my five year anniversary of NED (no evidence of disease) diagnosis. I have been waiting for this day, this special marker in the cancer world, since I heard those three words, “You have cancer.” I imagined this day multiple times throughout the years. In my imagination it would be a day of huge celebrations, with a big party with my friends and family to commenorate this huge milestone. It would be a day where I would finally feel relief from the constant worry of recurrence. It would be the day my life went back to “normal” and I could magically turn back into the “pre-cancer-me .”

I was wrong.  

This day comes with many mixed emotions for me. When I was diagnosed, I thought I would go through treatment, recover, move on and never look back. Nothing could be farther from the truth.

I went through the treatments, the chemo, the external radiation, the internal radiation. Treatments that made me so sick I couldn’t work, couldn’t take care of my children, couldn’t do simple tasks like walk up the stairs or eat a small meal. Treatments that took away my fertility and put me into menopause at age 36. I went through countless side effects, including an allergic reaction to chemo, stents being placed in both ureters, a radical hysterectomy, reconstructive bladder surgery, not to mention the daily side effects I still currently deal with. These treatments almost broke me. There were many times I wanted to give up, throw in the towel and declare cancer as the winner.  It is only because of my children that I didn’t do that.

Once I had finally gotten through the treatments for cervical cancer, and hit the one year mark, I was excited. I was on the right track, moving forward. I began to get more involved with Cervivor and advocacy. I began embracing my story and sharing it with anyone who would listen. Then I got the news that I never, ever expected to hear.

I was diagnosed with pre-cancerous lesions on my vaginal wall. A new and different type of cancer, still caused by HPV.  Never, not once, did I imagine I would be dealing with a second, even more rare type of pre-cancerous lesions.  It hit me like a ton of bricks. And yet, with my new found support system through Cervivor, I felt I could handle it. I would do chemo again. I would change my diet and eat zero carbs and zero sugar to help curb the growth of these lesions. I was a woman on a mission and no one could stop me.

Two months later, after treatments, the lesions were gone but the relief still didn’t come. I went to each six month appointment expecting the worst. I became a basket case every six months, for the week leading up to my appointments and for the following week waiting for the results. I was basically incapacitated.  

I was lucky. For the next four years I had clear exams. At my four year appointment, my oncologist told me she didn’t need to see me in six months and that I could wait a full year until my next exam. I felt like this was a huge milestone.  She wasn’t worried, so I could let my guard, just a little bit.

I was wrong, again.

My five year exam revealed that once again I have lesions on my vaginal wall. This time it has wrecked me. The chemo has been very difficult, painful and exhausting. I feel like I have the flu all the time. My anxiety is through the roof, and my physical and emotional stability are precarious, at best. 

And I am still coming up on five years free from cervical cancer. I have so much to be grateful for and to celebrate.  I have not had a recurrence of cervical cancer, which means I most likely won’t. I have two beautiful children and a supportive, adoring husband. My family is amazing and continues to lift me up when I fall. My mom, in particular, is there whenever I need her, day or night, near or far, she is always there for me.  

I am grateful for the way that cancer changed me. It gave me a new purpose in my life, I have been able to lobby with ACSCAN in both California and Washington D.C. I have met the bravest, kindest, most caring women in the world, through Cervivor. Women I never would have met, had it not been for the “exclusive club,” that we were all forced to join. I have learned that I am stronger than I ever thought possible and that my voice and my story matter.  These are all things to celebrate.  

And yet here I sit. Tears streaming down my face.  

I am crying for what I have had to go through. For what my family, my husband and my children have had to go through. And for what we all continue to go through with this round of lesions and chemo. I am crying for the fear that I still have, and will always have, about my future. I am crying for the women I know who weren’t as lucky as I am, and didn’t get to see their five year mark. Because that’s what it boils down to. Luck. Women with the same diagnosis and treatment, and some of us survive and others do not. No one isn’t fighting as hard as they can. None of us leave anything on the table when it comes to this fight against cancer and HPV. Some of us are just lucky, and luck is a very hard thing to celebrate.  

Ana & Jeff

My five year cervical cancer NED anniversary is a conundrum of mixed emotions. I am both optimistic and fearful about my future. I am sad and in a constant state of sorrow for what I have had to endure, and for what others have had to endure, and for the luck of the draw. And yet, I am grateful. So, so, grateful. The amazing thing about being human is that we can hold all of these things at one time. 

So, here’s to five years. In honor of my journey I ask that today you live your best life. Do something that brings you joy, hug those you are close to, and reach out to those who are far away. I ask that you please make your appointments for your Pap and HPV tests, and most of all that you vaccinate your sons and daughters against HPV.

Ana is mother of two, wife, educator and Cervivor Ambassador. She was diagnosed with cervical adenocarcinoma at age 35 and has been diagnosed twice with vaginal lesions, caused by HPV. Ana is currently finishing chemotherapy treatment for these lesions. Her goal is that no woman feels alone when they receive a cervical cancer diagnosis and that her generation be the last to to deal with HPV related cancers.