18.

18 years cancer free. I type those words and I feel so many emotions. I do not take lightly the magnitude of surviving 6,574 days beyond cancer.

Wow.

My eyes well with tears as I now say that aloud. I am grateful. I’m blessed. I’m lucky. I am honored. I am happy. I’m sad. Sad? I’m Angry. Angry? Yes, because there is a part of my heart that also aches for those that don’t get the opportunity to reach a milestone, such as this. It’s what’s commonly known as, “survivor guilt.” The guilt of “having made it.” But with cancer you’re always looking over your shoulder and are always just a cancer cell or more away from “what ifs.” I remember the enormous cloud of anxiety (and fear) that came with reaching one-year cancer free, and then five. Last year I had a scare. I didn’t know if I would still be cancer free for year number 18 but I am, and I am grateful. I’m also honored as I know that every single day, month and year matters. It’s an honor and a privilege to be 18 years cancer free.

I learned some time ago that I had to honor this time — not just this year, but every single day.  And I do that in various ways. First and foremost, I do that by the way that I live my life. I live my life as if tomorrow is not promised. I live my life by enjoying my imperfectly perfect life. I live my life by giving thanks for what I do have and try hard to not worry about what I do not. I wrote an entire book about it. If cancer taught me anything it is to be grateful for life and I seriously find joy in living my best life beyond cancer. Cancer does not hold me hostage anymore. 

I give back to the cancer community in many ways, but the biggest way is the nonprofit that I founded and lead, Cervivor. That work continues to inspire, empower and remind me that I am alive. It can be bittersweet, because while I honor this life beyond cancer, working in this space triggers past traumas of an emotionally and physically difficult time in my life. I’m also surrounded by women who are sick and who sometimes don’t survive this disease. That is probably the most painful part of this work. But, it has also become that catalyst of why I can’t abandon this work. Women still die of cervical cancer despite all the advancements that have been made. While we can prevent cancer in future generations we need more help for women who endure recurrent and metastatic cervical cancer today. I believe that we will make that happen. 

When I first became a patient advocate, I didn’t know that it would look like it currently does today. I didn’t set out to become a patient advocate. It was exactly the opposite. I wanted to forget cancer and pick up right where cancer had come in and halted my life. But the harder that I tried to do just that; the more difficult it was to bury it while trying to navigate my “new normal”. I just couldn’t do it. I couldn’t reconcile how this thing had happened to me. How would I move forward with life. How do you live with the constant cloud of cancer hanging over you? I did decide to do something with “it” and “it” was to start sharing my story. I remember feeling that my story wasn’t as dire as some, and that compared to others it seemed that I had it “easier.” Why would anyone want to hear my story?  AND who would want to hear about cervical cancer and me talking about my “coochie” 🙂  But there was this feeling deep from within that I just had to do it. I had no idea what I was doing, but I learned just by doing something day by day and looking to others who could mentor me. Being a patient advocate isn’t a cookie cutter thing. There isn’t a one way fits all type of advocacy. Being a patient advocate is about being committed to a cause. It’s being vocal. My cause is to end cervical cancer. And with each year of survivorship that has become  even more personal than I could have ever imagined. I never thought that I would see myself here. But I am and I promise to make my survivorship count

My goal has always been to connect and mobilize as many cervical cancer patients and survivors; as possible. Over the last decade it has also been to get those women (and their networks) engaged in active advocacy. The past 18 years, I’ve met some incredibly dedicated women and more recently we’ve lost a few that not only hurts personally, but also comes at a great loss to the cervical cancer movement. 

That is what makes this cancerversary bittersweet. I want to yell from the rooftops that I AM 18 YEARS CANCER FREE (and I will), but I’m also sad to not be able to do the same with women like Jillian Scalfani, Lisa Moore, Brittaini Qadri, Lizzi Haas, Erica Frazier Stum and Laura Brennan. These losses hurt not only because of the loss of life, but because of the loss of champions for our cause. These women were giants. I miss them terribly. These women got it — in a big way. They were loud, vocal, passionate hadvocates. They understood the enormity of what we’re up against and the power of our collective voices to overcome it. I miss their willingness to be “all in.” I’ll continue to share their stories. Their voices will be heard.

This day will be about celebrating and a reminder that I am still here, but it is also a reminder at who is not. It’s bittersweet. But I’m focusing on the words of my friend, Dr. Sabrina Mikan, “Life is incredible! I appreciate each day I receive.” 

Amen.  

Tamika Felder is an 18-year cervical cancer survivor and award-winning women’s health advocate. She is the Chief Visionary at Cervivor – a nonprofit dedicated to cervical cancer advocacy and support. Named a “Cancer Rebel” by Newsweek in a 2017 cover story, Tamika is a highly sought-after speaker on cervical cancer advocacy, cancer prevention, HPV education, and living life with purpose after cancer. She is the author of “Seriously, What Are You Waiting For? 13 Actions To Ignite Your Life & Achieve The Ultimate Comeback.” Tamika currently serves on the steering committee of the National HPV Vaccination Roundtable. She’s also shared her story and experiences on Presidential Cancer Panels convened by the White House. An award-winning television producer, Tamika is currently filming a documentary about cervical cancer, the women living with it, and the vaccine to prevent it.  Her story of patient-to-advocate / survivor-to-Cervivor inspires and mentors not only patients and medical communities, but anyone who has struggled with obstacles in their life.

Year Twenty

March 17th, 2019… St. Patrick’s Day for most, a totally different day for me. This year, more significant than ever before, because on this day I hit a significant milestone. Today marks 20 years since the day I heard the words that changed my life forever: “You have cancer.”

I know I write about it every year, but writing this, today, on year #20, is surreal. 20 years is a lot of time for any cancer survivor.

I was 27 years old when my world came crashing down. I had been struggling with some vague symptoms and suddenly the profuse bleeding began. Imagine yourself in my shoes. Imagine yourself rushing to the ER for the second time in a week because you are bleeding so much that blood is literally seeping through your pants. Imagine being seen by a doctor that within minutes of checking you decides to transfer you to another hospital because he realizes that what you have is serious and much more than he and that particular ER can handle. Imagine yourself being rushed to another hospital in an ambulance, knowing you are on the way to THE HOSPITAL, the one where all serious cases are routed. You now know for sure that something is terribly wrong. The attending sees you and knows exactly what he is looking at, he performs a biopsy, packs you to stop the bleeding (all the while you are screaming in pain) and admitted to the hospital. Imagine yourself, a generally healthy person, in a hospital bed after losing so much blood that you now need a blood transfusion. You are scared to death. You see the look in your family and friends’ eyes and know they are terrified for you. You are just 27 years old and have your whole life ahead of you but based on what’s going on, you don’t know how much life that will be. Imagine yourself returning home after a couple of days, albeit not able to work yet, you are too weak for that. Imagine yourself a week later, showing up to the outpatient clinic early in the morning for your follow up visit. Almost everyone around you is seen and you are still there, waiting. You hear someone say “they leave the bad news for last.” Suddenly you realize that you are the last patient.

You enter the exam room and are met by the attending and a couple students. The attending holds your hand and tells you: “I am so sorry, you have cancer.” You ask for a minute, you don’t want to hear this news while you are in stirrups. You sit up and hear the words again, you are fighting tears. He asks you if you have children and you answer “no.” He follows up with “I’m sorry, you will not be able to have children of your own.” You can’t hold your tears anymore, this is pretty much the end of your life. You are overwhelmed and scared and ask the only question that seems to make sense: “how much time do I have,” the doctor doesn’t know… you don’t know if that is good or bad. Amidst all this you are given tons of information, referrals and instructions; nothing makes sense, all you can think of is cancer. This is definitely the worst day ever.

Imagine telling your mother that you have cancer; you watch her breakdown in front of you and you are unable to comfort her because you are just as terrified. Imagine calling your close relatives and your best friend to tell them the news; you hear them cry even though they are doing their best to keep it together for you… they too think this cancer will kill you but they want to be supportive for your sake.

Imagine living the next year of your life attending 3-4 appts. per week, not being able to work. Imagine experiencing a pulmonary embolism that lands you in the hospital for a whole month and nearly kills you, cancer is suddenly not the only thing you have to fight, there is so much more that comes with it. Imagine throwing up for a week straight after your monthly chemo treatment, or being isolated in a room for 3 days while receiving internal radiation, or being unable to leave the house because side effects from the external radiotherapy has you going to the bathroom too many times to count. Imagine not being able to eat your favorite foods because chemo has changed your taste buds. Imagine your “social life” is now one medical appt. after the other. Imagine living a whole year of your life feeling weak, being hospitalized again due to side effects of your treatment, suffering through painful and debilitating treatments with no guarantees that they will work. Imagine going to your oncologist appts. and noticing that the people that are usually there the same days you are, are looking worse and worse each time you see them until all of the sudden one by one you don’t see them anymore. You know exactly what happened and wonder if you are next.

Imagine waiting for results once the treatment is completed… you are not told you are “cured”, you are told that you are good for now but will have to continue coming in for regular testing. You now see a gynecologist-oncologist and a hematologist-oncologist, a radiation specialist, an internal medicine specialist, a pulmonologist, and a gastroenterologist every single month for the foreseeable future. This is your life now and you don’t know if you will survive the next year, or the next, or the next. Nothing is guaranteed.

So here we are on March 17th, 2019: 20 years later. For cancer patients, the 5-year survival milestone is significant; we know a lot of people don’t make it…that 5 year mark is cause for celebration and some relief. I’ve been blessed to see the 5 year mark, the 10-year mark and now this incredibly important milestone: 20 years. By the grace of God, I survived a cancer that kills more than 4,000 women in the US every single year. This is huge!

As I learned more about the causes of cervical cancer, I became an avid advocate; talking about it is important, it may save someone’s life. Connecting with Cervivor solidified my commitment to advocate and educate others and it also connected me with hundreds of other women facing the same, often misunderstood, cancer. The vast majority of cervical cancer cases are caused by a persistent human papillomavirus infection (HPV). HPV is transmitted through skin to skin sexual contact (no penetration needed) and it is so common that 8 out of 10 people are infected even though they may not be any symptoms. Cervical cancer can be prevented or detected early through regular Pap and HPV tests; but most importantly, HPV infections can be prevented with a simple vaccine. The HPV vaccine, when administered prior to exposure (recommended for ages 11-12), can prevent infections with the high risk strands of HPV which are linked to cervical cancer and other cancers as well (vaginal, vulvar, anal, penile, oropharyngeal). Yes, the HPV vaccine can help the next generation prevent HPV infections and related cancers. It can’t be any easier: vaccinate and protect against cancer.

Maria sharing her story in Colombia, spring 2018.

After 20 years I have learned to live with the long-lasting side effects of my treatments, my body is not perfect but is in better condition than expected; I am back to annual checkups and that’s a great place to be. I’ve had the opportunity to start over. I am as healthy as I can be, married to an incredible man, a stepmom to 2 pretty awesome kids, have the sweetest dog and have experienced so much love and joy in my life… 20 years sure calls for a celebration. I am blessed.

In writing this, I hope my story motivates you to schedule your Pap & HPV tests and to vaccinate your children to protect them against HPV and if you are a cervical cancer patient, I hope my story gives you hope for life after cancer. This is how we celebrate year #20.

Watch Maria share her story on CervivorTV here.