As cervical cancer survivors, our bodies undergo very traumatic changes. Chemotherapies. Radiation therapies. Hysterectomies. Biopsies. We also live with lasting side effects that continue to wreak havoc on our bodies and emotional well-being.
Ten months after my cervical cancer diagnosis and radical hysterectomy, I faced an unfamiliar surgery — a pelvic exenteration. At this point, I didn’t feel like I had a choice. My cancer had metastasized and this was my only option. The choice was made for me.
A pelvic exenteration is the removal of the vagina (I opted for no vaginal reconstruction), bladder, urethra, rectum and part of the colon. I was left with a colostomy (I call Ethel) and a urostomy (I call Fred).
What is an ostomy?
Colostomy = An opening in the abdominal wall in which the end of the colon is brought through the opening to form a stoma. The stoma looks like the lining of your cheek. Unlike the anus, the stoma does not have a shut-off muscle so I cannot control when I go (or the sounds that emit from my stoma – and yes, it farts).
Urostomy (Ileal conduit) = Uses a section of the bowel, surgically removed from the digestive tract and repositioned to serve as a conduit for urine from the ureters to a stoma. One end of the conduit attaches to the ureters and the other end, in my case, to the second stoma.
I have bags that attach to appliances (adhesive patches with plastic ring openings) that collect my waste. In the ostomy world, I am a ‘double bagger’.
Getting used to foreign objects attached to your body where waste pours out of is challenging to say the least. It was downright overwhelming at first. I cried every time I had to change my appliances and bags, which was every other day in the beginning. I felt helpless and angry. But as I physically healed things started getting easier and my frustration level decreased. I learned the best time for changing my bags, I learned what foods did and didn’t work with my ostomies and I learned there’s a whole online community for ostomy support and care.
I also decided that since I was still here I wasn’t going to let my ostomies or my cancer dictate how I was going to live my life. I slowly went back to doing the things I always loved: hiking, swimming, traveling and Jazzercising. Taking back parts of my life was empowering and I felt strong again. Being able to still be me, to do the things that made me feel “normal”, helped me accept my changed body.
Most days my ostomies are unremarkable, just another body part. But I am keenly aware that my cervical cancer took away parts that gave me my womanhood and that I now redefine what it means to be a woman, a true Cervivor and someone who lives for more sunny days.
There are other women in our Cervivor community who are living and thriving with ostomies. If you are facing an ostomy surgery please know that you are not alone and that you have resources. We are here for you.
Carol is our Lead Cervivor Ambassador and manages our Cervivor Meet Up program. She lives in Northern California where she raised two amazing kids and hikes with her husband and their fur baby Ace. Carol & Cervivor have put together a helpful guide for those undergoing ostomy surgery. Click here to view.
Cervical cancer survivor Maria Franklin, recipient of the 2019 Cervivor Champion Award, is BUSY – during Cervical Cancer Awareness Month, and all year long!
She embodies everything Cervivor and the “Cervivor Spark” stands for. Informed. Empowered. Alive.
She mentors other cervical cancer survivors. She hosts MeetUps. She fundraises – via social media, in her community, wherever and whenever she can. She runs the Cervivor EspañolFacebook group. She helped organize and co-facilitate a Spanish-language Cervivor School in Puerto Rico. She leads initiatives to help ensure that cervical cancer screening, vaccination and prevention messages reach the Latina community in the U.S., and in Central and South America.
She even used her birthday as an opportunity for education and fundraising by creating a campaign and rallying her friends to “Help celebrate my 48th birthday by joining me in walking, running or cycling a total of 48 miles during the month of October!” #48MilesToEndCervicalCancer
She embodies support and advocacy. She brings her passion to everything she does. She is making her survivorship count, day in and day out. Mobilizing. Advocating. Educating.
Initially diagnosed with cervical cancer in 1999, Maria is a 20+ year survivor who started advocating for cervical cancer prevention and helping to forge a cervical cancer community of women “before there was social media” and before there was Cervivor. She has never slowed down.
A “proclamation” from the Governor’s office to officially recognize the importance of January as Cervical Cancer Awareness Month in Wisconsin.
Interviews with Telemundo Wisconsin and radio stations in Puerto Rico to talk about cervical cancer awareness and prevention
“Teal & White Days” at work
A patient reception for Cervical Cancer Awareness Month, in partnership with a local gynecologic oncology clinic
A Cervivor MeetUp to connect in-person with women in her community who are battling cervical cancer or dealing with the after-effects
“Every single one of us has to do our part. We have to do our part so we can make this a reality for the next generation. Nobody else should have to go through what we went through,” says Maria.
What is your part? What are you doing over CCAM in your local community?
Let us know in the comments below. We’d love to feature you and your work on our blog, if you are interested!
Watch Maria’s powerful Cervivor Champion Award acceptance speech at the 2019 Cervivor School awards ceremony, or read her remarks below.
Maria’s Award Acceptance Speech:
I truly believe in Cervivor. I truly believe in what we do here. I know we can end cervical cancer. This is why we are here. Every single one of us has to do our part. We have to do our part so we can make this a reality for the next generation. Nobody else should have to go through what we went through.
story is different for every single one of us. It wasn’t easy for any of us. No
one else should have to go through what we went through. So we are here today
to take this responsibility seriously. Because ending cervical cancer is our
job. We have to do it because we have to honor what we went through, and also
because of the people we have lost.
when you leave here [Cervivor School], you start your work and you start your
mission. And if and when you’re feeling you may be a little burnt out, you
reach out to one of us and we will help you. We will support you. Because we
need to do this for the next generation!
Thanks, Maria, for all that you do for Cervivor, for women today and for the next generation who – with your help – may live in a world free from cervical cancer.
Maria Franklin is a 20-year cervical cancer survivor who
heads Cervivor’s Latina advocacy efforts.
The badass, fired-up Cervivor in our video, “Raising Hell To Make Cancer Pay,” is Mary Baker, who is “pissed off” at what cancer has done to her body, her family, and her friends.
“I’m pissed off that four of the women
that I saw last year [at Cervivor School] are now dead” from cervical cancer.
Mary’s solution to being pissed off?
Watch her video here.
We had a chance to chat with Mary about her experiences, and what it means to “raise hell” as a Cervivor Ambassador in her hometown of Richmond, Va. and advocate for cervical cancer prevention.
Q:From the video, you really are fired up by a “Cervivor Spark” to share your story and drive change. Can you tell us what led to this fiery passion and fighting spirit we see in the video?
I had started experiencing odd symptoms that I knew weren’t normal. I kept listening to my body and going to doctors, but it took me going to four doctors over two years until one finally took me seriously and did more advanced evaluations. By that time, I had stage 3B cancer. One of my healthcare providers had told me again and again that it was “just hormones.” Another made some sort of offhanded comment that I should just focus on having babies – although I already had two children and I wasn’t there to ask about fertility! I kept getting misdiagnosed because, even though I knew there was something “off” with my body, I wasn’t being heard and my concerns were not being addressed.
Women need to listen to their bodies, but that is not enough if the medical community does not take us seriously and listen to our concerns. The worst part is, from my connection to other Cervivors, I now know that I am not the only one to have had months or years of misdiagnosis. This is an experience that has frustratingly been shared by many of us! I’m pissed off about that!
Q: Being “pissed off” is an emotion that many of us share. How do you deal with feeling “pissed off” about these issues?
In all honestly, it is only now – a few years after my June 2016 diagnosis – that I am delving into the anger and frustration and using it as a force for fighting back, as a force for advocacy and change.
When I was going through treatment and recovery and settling into my new post-cancer life, I had to protect my peace and choose gratitude over anger. At the time, that was better for me and for my recovery. That was better for me and my family.
For a long time after I went through my treatment, I was in a bit of a fog. I was trying to to re-figure out who I was at that point, post-cancer. I couldn’t think about my anger at that point. The anger didn’t serve me for where I was.
Now 3+ years after cancer, I’ve decided that I can choose both. I can feel gratitude for being on the other side of the disease and being here today, yet still feel angry. What happened to me wasn’t okay and it shouldn’t happen to anyone else. I’m mad that misdiagnosis and having symptoms ignored has happened to so many other women. Worse is that I keep losing friend after friend to cervical cancer. THIS PISSES ME OFF. Now it serves me best to do something about it!
Q: How do you plan to “raise hell”?
Thanks to Cervivor and the training I’ve benefitted from at Cervivor School, I have a lot of options on how to raise hell. First and foremost, I’ll raise hell by telling my story to anyone and everyone. I’ve shared my story with members of the U.S. Congress in Washington, D.C. as part of Capital Hill lobbying days.
I sit on the Virginia Immunization Taskforce. I am a district lead in Virginia for the American Cancer Society’s Cancer Action Network. I recently wrote an article about my experiences for HealthyWomen.org so that I could reach many more thousands, maybe even millions, of women.
I’m unstoppable now in telling my story, as I know my voice matters. That all of our voices matter. We cannot be silent. Our voice must be heard. That is how change is made!
Q: How do you want other individuals and Cervivor as a group to “raise hell”?
To all women I say, listen to your body. Speak up and speak out. If a doctor’s diagnosis doesn’t feel right, keep asking and keep pressing. I wish I had done that when I was told my symptoms were “just hormones.” If your doctor doesn’t take your concerns seriously, find one who will.
For fellow Cervivors, tell your story. Share it as many times as possible. Don’t keep it to yourself. You may think your voice doesn’t matter, but it does! Realize that you matter, that your story matters. Speak your truth.
If you want more training on advocacy, take advantage of Cervivor School. Plug into the learning and mentorship of other Cervivors. We are here to support each other in dealing with cervical cancer, and we are also here to support each other in our advocacy…and in our anger. If you want to join me in raising hell, reach out to me and plug into Cervivor!
Cervical Cancer Awareness Month (CCAM) is very much about advocacy, education and outreach. It’s about making our voices heard and about not allowing cervical cancer – and the toll that it takes – to be invisible or stigmatized. This is very much is the mission of Cervivor. Yet, there is also a quieter yet equally as important mission: to be here for each other, to be a support, a shoulder to cry on, an experience-sharer, and a place to go for connection with someone who has been in the same place, fighting the same disease.
Cervivor’s video “Hey Girl” highlights the lifeline that the Cervivor community has been for so many.
“To the girl who’s just been diagnosed with cervical cancer, I want to say, ‘Hey girl – I’ve been there too.’ I understand what you’re going through. Your mind is spinning, you’re confused. I just want you to know that you are not alone,” says pink-haired Iowa-based Cervivor Ambassador Emily Hoffman to the camera, kicking off the video.
Emily shares some of her experiences with Cervivor support and connection below:
Q: How did you plug into the support network of Cervivor? What does it mean to you?
It’s funny that I’m in a video that will be shared across social media, as I am not active on social media at all. I don’t use Facebook or Instagram or Twitter. I also wasn’t active on it back when I was diagnosed with cervical cancer in 2013 at age 30. I’d gone through diagnosis and treatment alone, without a supportive community to connect with, share with or learn from. I didn’t know that I needed it. I didn’t realize how alone the disease had made me, and how alone I had made myself.
I first found the Cervivor website in early 2014 a few months after my treatment ended, and I spent the next 24 hours on it! At the time, I was experiencing so many side effects from my radiation. On Cervivor.org, I finally found ‘my ladies, my community.'” I read every story, every page of the site. I clicked on the link to CervivorTV on YouTube and I watched every episode. I literally stayed up all night. That was the first time I’d found other young adults with cervical cancer. The website became my lifeline! The website became my connection to other young women who had been where I’d been and had gone through – and were going through – the same thing I was. I no longer felt alone.
Through Cervivor events and events like CancerCon, I met others in the Cervivor community. The people whose stories I’d benefited from online became real to me. They put me in touch with other cervical cancer survivors. Suddenly, I had women just like me to talk to, to call, email, and text.
Today, six years later, I am a Cervivor School graduate and a Cervivor Ambassador. I’m still not on social media, but I’m connected in so many other ways. If I have a worry or frustration or scare – I have people – via email, text, phone and in person – to reach out to who ‘get it.’
Q: How did you come to be the face of the “Hey Girl” video?
One of the activities I participated in at the 2019 Cervivor School was to write a letter to a woman who was newly diagnosed with cervical cancer. I guess my letter moved people, because the next thing I knew, I was asked to record and film it!
Because we were writing to an anonymous woman, I struggled with how to start the letter…so I sort of naturally landed on “Hey girl” as a greeting, because it felt informal, friendly and inviting. Little did I know that “Hey girl” is actually a popular internet meme – which people told me later – that features Hollywood heartthrob Ryan Gosling saying all sorts of romantic stuff. Maybe that’s why my letter got such a good response, without me even trying.
While people have shown me the Ryan Gosling memes (they really are quite funny!), my own “Hey girl” message is no joke. It’s true, personal and heartfelt. Women need to know that they are not alone. Women undergoing diagnosis and treatment – and the after effects of treatment – need to know that there is a whole community of women – a whole organization of Cervivors – here to support them.
Q: Six years after your cancer diagnosis, how do you plug into the Cervivor network of support today?
I take great comfort in knowing my Cervivor community is here for me. I have the phone numbers of many of the women I’ve connected with, that I carry with me wherever I go, for whenever I may need them. For example, when I come out of an oncology follow-up appointment, I know who to text. In fact, recently my doctor said something not bad, but not particularly comforting – something I wasn’t exactly sure how to interpret despite my questions. It sent me spiraling. So I sent a text out and I got responses back in two minutes. That’s all I needed. They heard me, they got it. They put me at ease in a way no one else could at that moment. In this community, we can always be unfiltered and never need to worry about judgement.
Now, being active in the Cervivor community gives me a sense of purpose as a cancer survivor. It enables me to use my experience to make a difference to other survivors. This video will make a difference!
Emily is a 6+ year cervical cancer survivor and Cervivor Ambassador who is also involved with the Iowa Cancer Consortium and Iowa Department of Public Health on cervical cancer prevention initiatives. Read her Cervivor story.
Throughout Cervical Cancer Awareness Month, we focus on outreach and educating others. But in this time of new year’s resolutions and new beginnings, let’s not forget about ourselves. A few resolutions for life beyond cancer include:
No longer sweat the small stuff. We know just how short life can be. Therefore, let’s not waste time on things (or people!) that really don’t matter, or build us up.
Cherish the people who really matter to you. Our time is precious. Choose to spend it with people who matter.
Love the skin you’re in. We may all yearn for our lives before cancer. But the truth, following our experiences, we are no longer that person. Embrace the new you. It just might surprise you!
Try to leave fear behind: Those of us who are still here are blessed to be alive, no matter the physical or emotional limitations. We may be plagued by fear of re-occurrence, occasionally or continually. But it’s important to keep that in check and live… like never before.
Enjoy life. Give yourself permission to enjoy, relax, and to rest and reset.
Be adventurous.Do things that scare the crap out of you. Why? Because they remind you that you’re still here.
Spend time outdoors for physical and mental health. Whether you want to exercise, find a quiet space to sit, or even just picnic outside with friends, the outdoors is a great space to be in the moment, find beauty in the world and forget about responsibilities that may induce stress.
Make “healthy” fun: Find ways to make your health goals also fun goals. For example, schedule walks with friends instead of lunches or dinners. At Cervivor, we offer the “Survivor Slimdown” – a Facebook community focused on health and weight loss that is both supportive, motivating and fun.
Plug in to your community: Don’t be afraid to lean on friends, family and ask for the specific help you may need. The clearer we can be articulating the type of support we may need, the better our support will be. And of course, plug into Cervivor wherever and whenever you need us. We are here for you!
May we all have a happy, productive, fulfilling and healthy 2020!
I knew those two words were coming. I’d known for weeks. But when the text message arrived from Erica’s husband, JR, I wasn’t prepared at all.
All the special bonding moments we’d shared came flooding through me, as well as grief for all the moments we now wouldn’t get to share. As much as Erica had prepared us for “this” — we weren’t really prepared at all.
I first met Erica in September 2015 when she attended her first Cervivor School. She wasn’t on the other side of her cancer; she was in the middle of it. Fighting it. In the days leading up to Cervivor School, she hadn’t been feeling well and probably shouldn’t have flown from Indianapolis to San Diego. But she powered through. She showed up every single day of Cervivor School.
By 2016, she’d attended four Cervivor Schools – to not only keep honing her own advocacy and story-sharing skills, but to serve as a mentor to other Cervivors. She became our Lead Cervivor Ambassador. She became one of the faces of our organization. She became one of our most dedicated patient advocates. And, she became a friend who made a powerful mark on me in the brief time I knew her. She showed me what energy and passion was, even in the face of the worst kind of adversity that cancer can throw you.
She understood what it meant to be a Cervivor ambassador – to share, to post, to blog, to record, and to make sure that realities and ravages of cervical cancer could not be ignored. She shared on social media from her hospital bed. She came to our Cervivor Schools between hospitalizations to teach us the importance of never giving up the fight. She shared her story in as many places as possible, lobbying in her home state of Indiana and in Washington, D.C. and advocating for screening, prevention, and more treatment options for metastatic cervical cancer. Amid these activities, she authored a moving children’s book, “Living Life with Mommy’s Cancer,” with her son Wylee to help other families confronting cancer.
She made her survivorship count.
Erica received the Indiana Cancer Consortium Survivorship Award and the Indiana Immunization Coalition HPV Champion Award. She was also an advocacy volunteer with the American Cancer Society Cancer Action Network. This was a woman who lived her life fully, even while dying. Even while she knew she was going to die.
Erica wasn’t just a fellow Cervivor. She was my friend.
Erica let me glimpse into her life in the most personal of ways. She let me film her as she was getting treatment, and then as she was dying, for a documentary about cervical cancer that I am making. She let me film her in some of her worst, scariest moments. She knew how important it was to share and show and tell.
Cervical cancer is not an easy cancer.
I’m still in the process of making the documentary, and every time I watch and edit footage of my time with Erica, I’m moved to tears. I’m struck with pain. I’m flush with anger. We keep working to prevent cervical cancer, but my friends keep dying! Even as I’m filming my call-to-action documentary, I sometimes drift to a dark place of wondering, should I just give up?
Erica is one of the reasons why I can’t and won’t abandon this work. Even when I’m tired. Even when I have my own health issues, or another cancer scare (it wasn’t). Even when yet another Cervivor friend dies from cervical cancer. Even when I crawl into bed sobbing, pull the covers over my head, and wonder, what is the point?
Erica is the point. And the 4,000+ other women in America who die each year from cervical cancer. And the 270,000+ women around the world who die each year from this disease. THEY ARE THE POINT.
Women are still dying of cervical cancer despite all the advancements that have been made. Through our work, we can prevent cancer in future generations. Even from her hospital bed and hospice bed and literal death bed, Erica tackled that work. She recognized the importance of looking ahead, fighting the fight so that we can stop cervical cancer in its tracks.
In her book, Erica gave a personal acknowledgement to me for empowering her to share her story. But it is she that I owe a debt of gratitude to, for inspiring me to keep up the fight.
She is my call-to-action. She, and everyone who has lost their lives to this disease, is our catalyst for ongoing advocacy. Her commitment to the mission to end cervical cancer was the inspiration behind my creation of the Cervivor Legacy Award, in her honor.
She lives on in my work.
She lives on in our work.
With Cervivor, she lives on.
Let’s honor her – and all women who have lost their lives to cervical cancer – by stepping up our education and outreach this January for CCAM. Let’s turn this day, December 27th – the anniversary of her death, into a day of action, preparation and commitment to our shared mission. Erica wouldn’t want it any other way.
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.
My cervical cancer story started in my 40s. I’d been a single mother to three amazing children. They’d all grown up and I had started taking better care of myself and my health. For many years, I admit, I didn’t do my annual check-ups and Pap smear. I didn’t have insurance, but I also did not make time. I didn’t understand the importance of annual exams. I didn’t know what I was up against.
When I turned 45, I started noticing that my periods were different. I was having pain during intercourse. My lower back and the backs of my legs hurt constantly. I still didn’t have health insurance, so I didn’t go to the doctor. I thought my back hurt because I was trying to get healthier and doing more exercise. I lived with the pain for a while until I finally decided to go to the ER when the pain became worse.
At the hospital, I was told my pain was a “sciatic nerve” to be treated with ice and heat. They didn’t do a pelvic exam or ask about my reproductive health history or anything about that part of my body. They just assumed they knew what was wrong, and they sent me home.
(I guess they didn’t know what I know now: that low back pain and pelvic pain can be linked to problems with reproductive organs such as the cervix. That a sign of cervical cancer is pelvic pain – especially continuous pain, like the type I had.)
The pain went on for months. Then a day before my 46th birthday, I was going to the bathroom and something came out that was not normal – it was what looked to be a piece of flesh, from inside me. I knew right then something was wrong. The day after my 46th birthday, I went back to the ER. This time, they took me in for a CAT scan. After the scan, the ER doctor came in the room and handed me a card. He told me they saw a mass and that I needed to contact the doctor on the card ASAP.
I left the hospital crying, confused and scared. I was able to get an appointment for the following day. That doctor found an 8 cm tumor on my cervix. She told me right then, “I am sorry to tell you but you have cervical cancer.”
I did not know what to say or think. I burst out into tears. I knew my life had changed forever. I didn’t know what HPV or cervical cancer was. I was scared I was going to die.
My next six months were all treatment, a lot of it: 28 rounds of radiation, 6 rounds of chemo and 4 rounds of internal radiation also known as brachytherapy – a procedure that involves placing radioactive material inside your body.
The good news: in August 2017, I was told I was cancer free!
Today I want to teach everyone about HPV, cervical cancer and the other cancers that HPV can cause. I want to encourage all parents of boys and girls to make sure their kids get the HPV vaccine. I want to educate women of all ages to keep up with their annual gyn exams.
I also want to make sure that women and doctors know about the connection between lower back pain and pelvic pain to cervical cancer. While of course back pain and pelvic pain can be caused by many different reasons, it is important to at least be aware of the connection and ask questions. I wish the doctors in the ER had asked me before diagnosing me with sciatic nerve pain. I wish I knew to ask questions myself and to mention my irregular bleeding and pain during sex, even though I was at the ER for “back pain.” Cervical cancer is not something I want anyone else to go through. I am going to work hard for the rest of my life to spread the word and end the stigma.
Tracy Jimenez is a 2-year cervical cancer survivor from Colorado who recently attended the 2019 Cervivor School, where she learned “that cancer will not stop me and that I will be a voice to educate others. I am a fighter and Cervivor School showed me no one is alone in this fight.”
Thanksgiving is a big meal, and the main course of the holiday is gratitude.
Cervivor is a place to get real. So let’s put this on our holiday table: is gratitude easy or tough for you? As cancer survivors, can we confess that we sometimes have a tricky on-again off-again relationship with gratitude? If you’ve just received a diagnosis, gratitude is the last thing on your mind. It wasn’t on my mind in the chemotherapy chair.
As a survivor, I am epically, hugely, ginormously (seriously!) grateful for every day that I have. But that is mixed, still – 18 years later – with the feelings about my lost fertility and, on a bad day, frustration about my ongoing health battles with the after-effects of cancer.
The reassuring part is, I know I’m not alone. I
just need to turn to Cervivor
Stories and the Cervivor blog
to know that others are riding with me on the emotional rollercoaster of the
holiday season. I’m feeling grateful to the Cervivors who wrote so honestly
about their own gratitude struggles. Thank you for keeping it real. And honest.
“I wasn’t in a spirit for any holiday after receiving my diagnosis. Everything had gone dark. That year there was no giving thanks on Thanksgiving, no tree for Christmas. What was the sense of doing all that if I felt uncertain about my life? It took a while for me to feel ready to fight back. It was a difficult journey, but I got a second shot at life. Now, I give thanks every day as if it were Thanksgiving Day. I celebrate each day and see it as a gift given to me like a Christmas present. There’s so much I want to do, and I don’t take anything for granted. I see life differently now. Problems that seemed huge are not so big anymore. I really don’t sweat the small stuff.” – Patti
“It’s perfectly normal after cancer to have feelings of depression and anxiety. However, once we acknowledge them, we get to CHOOSE what to do with them… Since cancer, I choose to live in a different state of mind. Cancer brings you face to face with mortality, death, and time. Once I began to digest my mortality, it changed my mindset toward every single thing.
I no longer look at the holiday season with the same weight and importance as when I was a child. I still love them, and Christmas is STILL my favorite. But I live with much more intention and purpose now. Every day is Christmasbecause for me it’s a state of mind that I choose. New Years’ Eve brings hope and excitement, but I am just as excited about the next 365 days of opportunity and growth. This shift isn’t something that just happens. For me, it takes a bit of work.” – Holly
“It’s hard to feel grateful when you are nauseous, exhausted, depleted, and in pain. That’s ok! I would go into a cycle of feeling depressed, and then get mad at myself for not being more thankful that I would make it out of this alive. My boyfriend would constantly tell me, “You’re ‘should-ing’ on yourself again.”
Going through cancer is hard enough, and the side effects both during and after treatment are draining (to put it mildly). We should at least be able to give ourselves a break… People write inspirational and positive blogs to give others strength and hope, and to advocate for change, and all of that is useful and wonderful. But sometimes it is nice to hear that people are struggling with the same crappy emotions that you are. We all have those moments of sheer frustration and anger and complete debilitating sadness over the hand we have been dealt, and that is ok too.” – Ana
“This past year has been a process. A process of grief, depression, anxiety, anger and many tears, as well as gratitude, blessings and opportunity.” – Megan
“I had so much unresolved grief and unanswered questions. Cervivor help me settle some things within myself and fulfill the need I have for service to honor my mom. I am so thankful that Cervivor has once made me believe that I can go on. I can go on and help fight cervical cancer.” – Lillian
Do these reflections resonate with you?
What are you grateful for, and what are your gratitude struggles?
Please share in the comments below. We are here to listen and we are here to support you.
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.
As November comes to a close and families come together over the holidays, let’s remember the importance of the caregivers in our lives. November is National Family Caregivers Month and a great opportunity to give out appreciations to the family and friends who helped support us during our diagnosis, treatment, recovery, and today.
We are pleased that there are many caregivers who are active
in our Cervivor community. Several have shared their experience on our blog.
“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 developed a lot of inner strength during that time. I relied on the love I had for my mother to carry me through those 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.”
Lillian lost her mother to cervical cancer. In her blog, she reflects about the impact that caring for her mother had on her life. “Many times in my life there have been things that are rough. Many times I want to give up. Sometimes I am having a bad day. But I think about that day, when I held my mother’s hand and sang, and I feel like going on.”
“I just kept going and tried to do things that could keep us all moving forward getting through one day at a time. Ultimately my role as caregiver was to show up every day and do the very best I could. That’s really all anyone can ask of you, and it’s literally all you can do…Through this experience, I learned a lot about what it means to really be with someone. I learned that I can show up for someone in ways I’m not sure I knew I could before this. I learned that I’m stronger than I thought I was and that my Heather is truly the strongest person I know. I learned a lot about letting people in and being vulnerable. For me, being a caregiver meant calling upon all I had to get through one day and onto the next. It meant bringing the best parts of myself to the tasks we were presented with each day.”
Like Claude, who learned about truly “being a man” when he became a caregiver to his partner Holly.
“In my opinion, being a man is standing with the woman you love and help her walk down a linoleum hallway in the middle of the night and holding her hand as she struggles to stay upright. It’s holding the catheter bag filled with despair and fragile hope. Being a man is running to every CVS, Walgreens and 7-Eleven trying to find a back scratcher for Holly to use on her legs as she cannot bend down to reach them while she lies between fits of incredible pain. Being a man is staying awake all night to rub her back as gently as possible, so that she may rest for even just a moment.”
Caregivers are a core part of our lives and our Cervivor community. Please leave a comment below if you have an awesome caregiver you want to give a shout-out to. If you have a caregiver who is willing to write about his/her experiences and perspective, we’d love feature them in an upcoming blog! We are stronger when we share our stories, and the whole community can benefit. Email us at firstname.lastname@example.org
Is someone in your community currently helping support and care for a loved one undergoing cancer treatment? Make sure they have resources that can help, such as plugging in with the Caregiver Action Network.
Every year, as my birthday approaches, I go into reflection mode and start thinking about life. Life as it was. Life as it is. Life that almost wasn’t.
My life was forever altered by a diagnosis of cervical cancer at the age of 27. The days following the diagnosis were rough. Within a month of my diagnosis I landed in the hospital with shortness of breath and blood counts so low I needed my first blood transfusion. I spent exactly 30 days in the hospital, not sure if I was coming out alive. If you were around me at that time, you know how terrifying this period was, you know that my coming out of that hospital alive was nothing but a miracle (those were my pneumologist’s actual words). So here I am, celebrating #48 (or the 21st birthday I get to celebrate post diagnosis).
Survival… Life after cancer… This is something that doesn’t happen to many of the women diagnosed with cervical cancer. Within the last year my Cervivor community lost 4 beautiful women in the prime of their lives as a consequence of cervical cancer. In the USA, where approximately 13,000 women are diagnosed with cancer in the last year, 4,200 women will die due to this cancer. Some people may look at these numbers and think they are small (I’ve been told that before); well let me tell you this: These numbers matter. These numbers matter to the women diagnosed with cancer, hoping they are on the right side of this statistics. These numbers matter to the families of the women who die each year, to the young children that will grow up without their mom… These numbers matter to those of us who survive this disease, because we know how close we cut it, how nerve wracking every follow up is, because the cancer may be gone, but the damage it did to our bodies is permanent (think of infertility, ostomies, lymphedema, neuropathy, bladder problems, just to mention a few). Most importantly, these numbers matter because we can change them. We can change the statistics because we have the means to prevent cervical cancer: The HPV vaccination is the #1 way to prevent cervical cancer. Plain and simple. A vaccine can prevent cervical cancer. I don’t think it can be any easier than that.
We can literally protect our next generations from cancer-causing HPV strains by simply vaccinating our children (as early as 9yrs. old). It is an important vaccine because it would protect them from the high risk strains that are linked to cervical cancer (and cancer of the vulva, vagina, anus, penis, oropharyngeal (back of the throat). Cervical cancer will be like polio; gone, a thing of the past. I would love to see cervical cancer disappear and I believe that is possible with this vaccine.
So each year, around this time, that sense of duty to those who did not make it demands that I tell you to vaccinate your children. That 27 yr. old Maria, terrified at hearing the news that would change her life forever demands that I tell you to vaccinate your children. It is imperative that you do because this is the one cancer we can basically eradicate. Every now and then I see these prayer chains pop up in social media asking you to share a prayer to find a cure for cancer; well, we now have a vaccination that can prevent a cancer and that is an answered prayer.
Celebrate my 48th birthday with me by scheduling your well-woman exam and vaccinating your children against HPV. Maria Franklin is a 20-year cervical cancer survivor who is also a part of Cervivor Leadership, and heads our Latina advocacy efforts. She was awarded our 2019 Cervivor Champion Award. Watch her story here.
Did you know that Hispanic/Latina women have the highest incidence rate of cervical cancer in the U.S.? They undergo significantly fewer Pap tests than non-Hispanic white and black women and are less likely than women of other races/ethnicities to return for recommended follow-up after an abnormal Pap test.
National Hispanic Heritage Month (celebrated Sept. 15 – Oct. 15 to correspond with the independence of many countries in Central America) honors Hispanic history, culture and contributions. Communities across the country mark the month with festivals and educational activities.
Educational activities? That sounds right up our alley as Cervivors!
Festivals? Preventing cervical cancer and saving lives feels like something to celebrate to me!
We want to halt cervical cancer in its tracks, in America and around the world. To do that most effectively, we need to be aware of the disparities in cervical cancer incidence and mortality among populations of women.
For example, in the U.S., black women (followed by Hispanic women) have the highest death rate from cervical cancer. Mortality (death) rates of cervical cancer among Hispanic women are 50 percent higher than those of non-Hispanic women, and incidence rates among Hispanics are twice the rates of non-Hispanic women. Different populations bear different burdens of this disease, for different reasons. “I was diagnosed with Cervical Cancer stage IIB in 2008. I had not visited my GYN or had a Pap test for over 3 years. My mission now is to share my story to every woman especially Latinas, who are the most affected by this disease, and convey the message that my journey does not have to be theirs”. Patti Murillo-Casa
Data from the American Cancer Society show that Hispanic women are less likely to get regular Pap tests. Hispanic and Latino Americans amount to an estimated 17.8% of the total U.S. population, making up the largest ethnic minority. This makes it a focus for our educational messages about cervical cancer prevention with Pap testing, HPV testing and HPV vaccination. This makes it a focus for our advocacy, education and personal Cervivor stories.
What can we do as Cervivors?
Familiarize yourself with Spanish-language educational resources and share them as part of your education and advocacy work. There is a downloadable Spanish-language “foto-novela” from the American Sexual Health Association, for example, fact sheets from the National Cancer Institute and cervical cancer screening patient information sheets from the American College of Obstetricians & Gynecologists. (These and many more Spanish language resources are available here.)
Support local and national cancer control and prevention programs and policies aimed at decreasing disparities in cervical cancer mortality. For example: health reform efforts to reduce discriminatory practices against cancer patients and survivors (amen to that!); policies to include no-cost cervical cancer screenings and HPV vaccination as a mandated part of insurance coverage (hallelujah!), initiatives to expand HVP vaccination (yes!).
Support the National Breast and Cervical Cancer Early Detection Program (NBCCEDP): The CDC’s NBCCEDP provides uninsured and underinsured women access to no-cost screening and diagnostic services, as well as a pathway to cancer treatment. Support federal and state funding for this program. Advocate for more funding to expand the reach of this lifesaving program.
Share your story. We’d love to have more representation from Latina Cervivors on our site. Submit your story here and come to one of our Cervivor Schools to learn more about bringing education and advocacy to your community.
Cervical cancer is preventable. Cervical cancer is colorblind. So are we at Cervivor. We are all bonded by this disease. We are all motivated to ensure that no one else has to go through what we’ve gone through. Let’s be aware of the racial disparities in cervical cancer, address them head on, and put our support, stories and voices behind programs that can change cervical cancer statistics and save lives.
Let’s celebrate National Hispanic Heritage Month by recognizing the power and strength of the Latino community and to doing what we can to expand education about cervical cancer screening and prevention.