Have you recently been diagnosed with cervical cancer? Or are you a 3 year survivor, a 5 year survivor, a 20 year survivor?
Have you always wondered how to talk about your experience in a way that will help prevent others from having to go through what you went through?
Would you like to get more involved in educating your local community about prevention?
Whatever your story is, if you want to advocate to get rid of this disease once and for all...
CERVIVOR is for you!
Help end cervical cancer!
“I am Erica Frazier Stum, a mother, wife, and teacher who is in a continued battle with cervical cancer.
In October 2012, I was walking through the booths at a local festival when my life was changed forever. That is where I received a call from my OB-GYN giving me the results of a biopsy: I had cervical cancer.
I was told that I needed to see a gynecological oncologist as soon as possible. When I asked my OB-GYN what the typical treatment plan was for cervical cancer I was told a hysterectomy – even at the age of 27!
I found a gynecological oncologist who subsequently identified my cancer as stage 1B2. This specialist said I was a candidate for a special procedure which could preserve fertility. It was decided to do a trachelectomy, a 16 hour procedure to remove the cervix and surrounding lymph nodes. This approach was selected over a hysterectomy in an effort to preserve fertility; the panel of oncologists reviewed my labs after surgery and decided no further treatment was needed. During this diagnosis and treatment I had to take medical leave from my teaching position. At the end of treatment, I received a phone call that I was cancer free. However, this story doesn’t end here.
I went on living life; I was engaged to be married in June 2014, and was loving life. However, in April 2014, I was diagnosed with a recurrence; my cancer had progressed significantly. This time, I had lymph nodes involved as well as multiple tumors, including one which completely blocked off my right kidney. With this recurrence surgery wasn’t an option; the cancer had progressed too far.
First I had a port placed for treatment and a nephrostomy tube to help with the blocked kidney. I went through six rounds of carbo/taxol/avastin chemotherapy and then six weeks of external pelvic radiation and with an additional chemotherapy, cistplatin.
During this time, myself and JR went ahead with our wedding. Cancer doesn’t wait for anyone. We were married on June 28th and I had my second round of chemo just two days after the wedding. This treatment took a toll on my body as I had to take a six month medical leave yet again. This treatment also took something else away, the opportunity to expand my family. At the age of 28, these treatments led to the start of menopause and loss of fertility.
Relief came in March 2015 when I had a clear PET scan that left me feeling like I could move forward and leave the daily thoughts of cancer behind once and for all.
Unfortunately, 3 months later, during a routine PET scan in May 2015, a new cancerous lymph node was found. I am now facing another recurrence of cervical cancer, which is scary and frustrating.
I am getting ready to begin treatment for my third occurrence of cervical cancer. On my 30th birthday, the treatment will be an extensive surgical process. What is frustrating is that this surgery might not cure the cancer. I might face more radiation and/or chemo after this surgery. There is a fear that the cancer could go away and come back again. It seems like a never ending cycle.
My son is now 6 years old and has had to cope with his mother having cancer for half of his life. He has lots of questions. Some days he wouldn’t want to share my drink because he didn’t want to catch cancer.
Now, he honestly knows more about cancer than anyone should, and certainly more than any of us did when I started this process. We all learned a lot going through this experience, and I want to share what I know in order to help other women with a similar diagnosis. That is why I started a blog to chronicle my journey.
When someone asked me what one message I would give to women, I said: Women need to listen to their bodies and always be strong. Don’t miss your OB-GYN wellness check-ups! If cancer taught me anything, it’s that you never know what you can endure until you don’t have any other choice; be strong, persistent, and don’t give up.
Today, I am still working towards the goal of being “cancer-free.” With strength and persistence, I won’t give up.”
Did you know that Black women have a higher incidence of cervical cancer and HPV? The road to recovery can be rocky, as Alegra found out. Read her story here to find out how she came to embrace survivorhood. – Tamika
“At age 36 I was diagnosed with stage 1 cervical cancer. For treatment I underwent surgery and embarked on a slow and lengthy road to recovery.
The life-saving surgery eradicated the cancer but the radical procedure also launched me into full menopause at the age of 36. The relationships with my husband and daughter were altered immediately; I was no longer the same.
Learning about the diagnosis crushed me. The idea that I may not have a chance to see my teenage daughter graduate from high school and losing the essence of a woman was shocking. A dark cloud covered my family and took over our existence; for many years I felt paralyzed and unable to understand what was going on. Unaware of what to do and convinced that I could push through on my own, I chose silence and renunciation.
What I want other women to know is that recuperating from the physical aspects of the surgery wasn’t as dramatic as the emotional, psychological, and spiritual uphill battle. Outwardly all seemed the same but the inward devastation turned my world upside down. Nothing prepared our family for the immediate and long lasting effects of a radical hysterectomy.
Today I have a sense of empowerment to tell my story, recognize that I’ve been in denial for many years and I can acknowledge that I am a cervical cancer survivor! I am armed with the determination and the desire to assist other women, family members, and caregivers battle the personal issues related to cervical cancer.”
Cervical cancer can affect women of all ages, cultures, and lifestyles. Contrary to stigma, there is no one type of woman who is susceptible to this disease. Here is Carolann’s story of diagnosis and survival; read on for a reminder that it can happen to anyone. - Tamika, cervivor.org
“The Circus came to my town on Tuesday, July 15th 2014. It arrived quietly and, at first, without fanfare. It camped right in my yard, looking like it planned to stay for a while. It wasn’t your typical circus; not the kind you’d ever want to run away to join. It was the Cervical Cancer Circus, and as I found out at 8:15 a.m. on that Tuesday, I was the main attraction.
Anyone who has been diagnosed with cancer will understand the crazy, surreal circus feeling I experienced in those first days after hearing the “C” word: the feeling of being in a ring with spotlights shining on you – with medical professionals, family and friends paying inordinate attention to every movement you make and every word you say.
Then there is the emotional roller-coaster ride or more accurately, the feeling of being on a Tilt-a-Whirl that never seems to stop. Morning and night, all day long, you are up or down, swinging violently from mood to mood. I went from feeling like I had to live for the moment and had to create thousands of special moments to feeling that I needed to slow down and savor every second. My life was no longer an infinite string of days like I believed it would be; it was now finite and confined to the circus ring.
The circus wasn’t much fun for my husband and two college-aged boys. They, along with my dad, siblings, and friends gathered around to support me. This crowd of supporters were the spectators watching in fear as terrifying feats were performed in the ring; they were the people gathered around the perimeter fence, feeling dizzy as they watched me being tossed around but helpless to shut the ride down or pull me off.
Unfortunately, cervical cancer is not rare and this is an experience that too many women and their families will endure.
There are tens of thousands of women in the U.S. undergoing treatment today and more being diagnosed daily. According to the National Cancer Institute over 12,000 women were diagnosed with cervical cancer in 2013. More than 4000 women died from the disease in the same year. I, like most of them, received the diagnosis in a state of surprise, thinking that cervical cancer was a condition that happened to a different kind of woman.
The vast majority of cervical cancers, over 90% according to the CDC, are caused by HPV (Human Papillomavirus). As a woman nearing 50 who has been married for 25 years to the man I started dating in high school, I wrongly assumed this STD was something I didn’t have to be concerned with. Promiscuous is not a word that anyone would use to describe me!
I have only had two intimate relationships in my life, and I am active in my church and community: I am involved in church leadership, art education advocacy, and I hold multiple master’s degrees. STD’s and cervical cancer, in my mind, happened to women with numerous partners and many pregnancies; women who smoked, were obese, and weren’t educated enough to take care of their health. Of course, I was very wrong.
What I did not understand was that HPV is like the common cold of STD’s – over 75% of the sexually active adult population will contract HPV at some point in their lives. And it sticks around. HPV can remain dormant for decades and flare like the shingles virus that you carry if you ever had chicken pox. Yet the stakes are higher than the virus that causes shingles – several of the over 40 forms of sexually-transmitted HPV, two in particular (type 16 and 18) can cause cancer.
All of these facts – details I had been blissfully unaware of before July 15th – became headlines on my personal circus poster .
Yet this should not have been a surprise diagnosis. There were indications, years ago, that the circus was coming to town. Four years prior to my diagnosis, when I was approximately 44, I started experiencing minor spotting after intercourse. There was no pain. No sense of bleeding out – just a little pink.
Of course I panicked when I ran a Google search and cervical cancer came up as a possibility. I scheduled an appointment with my gynecological nurse practitioner who assured me that all my paps, taken routinely according to the guidelines, were negative. However, to be safe, a uterine biopsy was performed. It was negative.
Over the next couple years, I mentioned the continued post-intercourse spotting at each routine visit along with the profuse clear discharge that I had started experiencing (I was not too worried about the discharge as cultures that were taken indicated it was a normal mucous discharge and not the sign of any infection. Again, there was no pain or blood. No worries.). My next routine pap and HPV test both came back negative; an internal ultra-sound and another uterine biopsy showed no abnormalities. I had also started having the occasional hot flash. I was, it appeared, entering a normal peri-menopause.
As this peri-menopausal time progressed, I began having outrageously heavy periods. As a school teacher, this seriously impacted my work in the classroom. It was during a procedure called an ablation that inactivates the uterine lining, that my Gynecologist discovered the tumor high in my cervical canal – an area that is a less common location for cervical cancers and unfortunately for me, an area that Pap tests are notoriously ineffective in testing for cell abnormalities.
The opening act of this circus was the moment my doctor told me she had discovered something “that didn’t feel quite right” during the ablation and that she had performed a biopsy. The results of the biopsy came back positive for cervical adenocarcinoma – a cancer that accounts for 10 to 15% of cervical cancers – the kind that is harder to diagnosis with routine testing and is often found in later stages.
The more common cervical cancer, squamous cell carncinoma is the variety that presented on the exterior surface of the cervix and is the type that an abnormal pap smear is effective in predicting. With routine Pap testing, potential squamous cell carcinomas can be identified and treated when cells are identified in the pre-cancerous stage. That form of cancer is therefore in decline. Adenocarcinomas are, as a percentage of the total cervical cancers diagnosed each year, on the rise because the pre-cancerous changes are not as easily identified. I was now part of that statistic. Both my doctor and I took a deep breath and climbed on the ride.
The first spin on the Tilt-a-Whirl was her statement that I had tested HPV-positive. My head started spinning with this news. HPV is an STD! My husband and I had just celebrated our 25th wedding anniversary and we had been together over 30 years. I had only been in two intimate relationships in my life. My gynecologist explained that while I didn’t fit the mold, or what we assumed was the mold, for this diagnosis, in reality, HPV is the common cold of sexually transmitted diseases.
I tested positive for HPV 18 – one of the top 2 high risk varieties (and the one considered the most insidious as it tends to hide deep in the tissue avoiding early detection). I knew that there were other risk factors that played a role in causing the changes that lead to cervical cancer; among those factors are extended use of oral birth control, early pregnancies, obesity, and smoking, none of which applied to me.
I considered myself a poster-child of low-risk living. I’m a high school teacher; I go to the gym and maintain a healthy BMI; I volunteer for my church; I have never smoked and was only on birth control for a limited time. My gynecologist shook her head wishing there was an explanation other than bad luck. I began feeling like a freak in the circus side show.
The next few weeks were a crazy and half-remembered rush of tests and consultations. The endless conversations and phone calls with family, friends and co-workers were the worst part. I had my husband answer the phone when I was too exhausted to say another word.
My summer ended when the PET scan showed that the cancer had not yet metastasized, and I was a candidate for surgical removal of the tumor. On August 14th, I underwent a robotically-assisted radical hysterectomy. My oncologist removed the entire uterus and cervix along with my ovaries, tubes, the upper reaches of my vagina, and as many of my pelvic lymph nodes as she could locate. The aggressive surgery was successful with the pathology report showing that the lymph nodes and the margins surrounding the tumor were clean and cancer-free.
An 8+ week recovery period prevented me from starting the school year in September – a small cost compared to the threat of leaving a cancer in my body. Yet the circus, in a scaled down form, remains parked in my yard. The recovery is ongoing – too much activity too soon caused surgical complications that I am still dealing with nearly 6 months after the surgery. In addition to that, I will visit with my oncologist every three months watching for any signs of metastasis – cancer cells that might take up residence and grow in other areas of my body. This will continue for years. And I am truly one of the lucky ones – I needed no radiation or chemotherapy. Thousands of women will not have such a quick resolution and many will eventually die as a result of their cervical cancer.
I have experienced significant post-surgical complications and sexual dysfunction. My husband, a patient and loving partner, often reminds me that he would gladly give up sex if it means I will stay healthy. Of course, there is no easy guarantee of that! He also deals with the guilt of assuming he gave me the infection that lead to the cancer. And I still have the occasional fit of anger that it may have been his lifestyle prior to our meeting that caused me to get cancer decades after our marriage. Counseling has helped me deal with the anger and the fear of recurrence that I harbor. I wonder what me future and that of my family will be if the cancer reappears.
Yet, the future is promising for women younger than me: it promises that fewer women will unwittingly join the circus that I experienced. A highly effective vaccine, available to young women and men up to ages 26, will eventually make cervical cancer a rarity. The vaccine, now effective against 9 high risk forms of HPV, can be administered as early as age 9 when the immune system is most receptive. Ideally, the vaccine is given before sexual activity starts. For women above that age group and who did not get the vaccine (or got the vaccine early on when it only covered 2 to 4 forms of HPV), new guidelines are being introduced with a recently FDA-approved test that more accurately screens for the high-risk forms of HPV. While no test is 100% sure of catching every case of disease or cellular change, early warning through routine Pap and HPV testing can give medical professionals the information they need to make treatment decisions much earlier.
In the future, the only thing standing in the way of virtually closing down the cervical cancer circus in the US will be a woman’s disregard of her body’s subtle changes and a refusal to get routine, annual exams and testing according to updated guidelines. Trust me, this is not a circus you want join or even one you want visit with a mom, sister, or female friend!” – Carolann
In May of 2015, I told my HPV and cervical cancer story to a group of strangers for the very first time. This happened in St. George, Utah, where I was invited by the amazing Intermountain West HPV Vaccination Coalition to speak with a group of medical practitioners and community members who are fighting to improve HPV vaccination rates in a 5-state area.
The moment I agreed to go, I started stressing out about giving the speech. Although I’m not much of a public speaker, I generally do just fine. But the thought of this had me frozen.
And it wasn’t really a fear of public speaking, or being judged for admitting that I have had HPV (which is a common issue for anyone who publicly admits they’ve had it!).
It was because I was going to open up and tell these total strangers things that I hadn’t even told my family or closest friends… and I knew I’d cry while doing it.
I wrote out my 15 minute speech, practicing it over and over for my patient audience, which usually consisted of my 11 year old Pug, Dasha. I got pretty good at making it through the whole thing without any tears.
But a few days before my trip to Utah, I practiced my speech in front of two coworkers, who also happen to be dear friends. I cried! One of my friends said it was like that commercial from the 70’s, about pollution, where the Native American shed one single tear. But, I don’t believe her!
Apparently practicing in front of my dog, who is far more interested in her toys than in what I’m saying, is VERY different from sharing those deeply personal things in front of people who are actually paying attention, and who are responding to what they’re hearing. I had my two friends record this practice run so that I could send it to a few other people for their feedback too. I still haven’t watched the video myself and probably never will.
When I got to Utah, I was overwhelmed with how beautiful St. George is! I practiced my speech with Susie, another Cervivor also there to speak, and then went out to dinner with some of the people in town for the meeting. It was wonderful to meet so many people who are dedicated to protecting our youth from having HPV related cancers!
That night when I got back to my hotel room, I practiced my speech another 3 or 4 times, and then once again in the morning. The meeting started and lots of great information was shared. I was so excited about what the Intermountain West HPV Vaccination Coalition is doing and the impact they will have that I almost forgot I was nervous.
Then, it was my turn to speak. Although I knew that my voice was shaking, much like my doctor’s was the day she told me they’d found malignant cells in my cervix, I held it together pretty well. I told the audience about things that doctors said to me, some of which were very positive, and those which I hope other patients never have to hear for themselves.
I spoke about the emotional effects of what I’ve been through and how this has impacted not just me, but my family, friends, and significant others. As far as cervical cancer goes, I’ve been very lucky! But the last 10 years have not been easy.
I had it together and things were going smoothly until I looked around the room and saw that multiple people were crying because of my story. That was it! I began to cry too, but I kept talking because there was so much more to tell them.
I was very surprised that my story was impacting people this way. I really thought that my story only impacted my family and close friends, but it doesn’t.
Maybe, by telling my story and encouraging others to talk about this uncomfortable subject, we’ll be able to remove some of the stigma of HPV and cervical cancer. Maybe, telling our stories will encourage people to be more open to protecting their children through vaccination and education.
My experience in Utah was wonderful and has encouraged me to keep telling my story, even if doing it means taking giant steps outside of my comfort zone.
- Cindy Craddock
Today on Cervivor, we’re sharing Corine’s story. We hope her experiences can help other women traveling a similar path.
- Tamika Felder, Cervivor.org
“My personal experience with HPV and cervical cancer is a long and continuous road. It all brought me to where and who I am today, and most importantly, where I am headed.
Back in 1999, one of my best friends was experiencing abnormal PAPs for about two years. At that time there was no such thing as standard HPV testing and the connection between high risk HPV and cervical cancer existed, but was not common knowledge.
My friend’s doctor was perplexed by her issues; colposcopies and biopsies were not leading to any answers. It wasn’t until the end of 2000 that he was able to access an HPV test kit to see if that gave some insight into the problem. Luckily, it did.
The test clearly showed that my friend had concerning high risk HPV. After extensive research, her doctor concluded that this was what had been causing the changes to her cervix for so long, and another colposcopy was scheduled.
During that exam, the Doctor saw what he believed to be a cancerous lesion. The biopsy results confirmed it and she was immediately sent for a consult with an OB/GYN. Within one week she was told she had aggressive cervical cancer and would need full hysterectomy at age 40.
This was such a sad, chaotic and frightening time for her, her family, and her friends. How did this happen? She had been going to the doctor regularly and getting every test done as requested. How could they not have caught this and addressed it before it got so advanced?
I will tell you how: Because she was at the forefront of a huge medical breakthrough! Doctors were just beginning to realize that if they tested for HPV and caught high risk patients earlier and treated them more aggressively, they COULD stop the cancer BEFORE it advanced! Bittersweet. Huge advancements for gynecological patients around the country, but a hard lesson learned through her journey.
No, the story doesn’t end here. Not even close.
My friend underwent a hysterectomy and was told that no radiation or chemotherapy was needed at that time. She developed complications from a fluid-filled stomach which was thought to be more cancer, but ended up being an infection related to the internal organs shifting around after surgery.
There were a few heart stopping reality checks; what they thought was metastasis in her liver, and a false/positive PET scan that suggested even more extensive metastasis, but turned out to be wrong!
About 1 ½ years after her initial hysterectomy, a lump appeared under my friend’s arm. Her Doctor first gave antibiotics to address a possible infection, but the lump didn’t change, so she had surgery to biopsy it. Turns out, it’s cervical cancer.
Because of the removal of the lymph nodes in her pelvic region during the hysterectomy, the cancer had spread to the lymph nodes under her arm. This was a far spread from original site and also considered Stage IV.
Things were getting real. No one had heard of cervical cancer spreading to that area, and at this time, there were no known or documented treatment plans. It was anyone’s guess what would happen next.
When I accompanied my friend to one of her oncology appointments, the doctor started by handing her a brochure about where to get a wig when her hair falls out. A bad start to say the least.
After listening to the Doctor’s spiel with suggestions of extremely toxic and high dose chemotherapy, I asked what she was basing this on, and she didn’t have an answer. When I inquired as to how many times she had treated cervical cancer that had spread to this region, the Doctor responded that she never had. She told us it was not something documented as ever happening and there was no text book to refer to; so she was just “guessing” at the best treatment plan.
Guessing?? If it were your mother, sister, daughter or best friend would you be guessing this same way? No response. Out the door we went!
This marked the point when myself and another friend (who happens to be a nurse and legal consultant) jumped into survival more. We researched everything, including information on a study from Switzerland that showed women with metastatic cervical cancer did best by combining Cisplatin chemotherapy and radiation at the same time for approximately 6 – 8 weeks.
We were able to get more information by communicating via email with many helpful medical researchers. With all this information in tow, we helped direct my friend to the right physician at Memorial Sloan Kettering Cancer Center.
The Doctor was intrigued by her case, listening to all the suggestions and history up until this appointment. He had also heard of the study being conducted in Switzerland and agreed with that approach, suggesting it to my friend. He also said that if she had agreed to the other doctor’s suggestion, the chemotherapy would have definitely killed her before the cancer ever would!
The treatment plan was coordinated with local doctors closer to her home in New Jersey, and my friend fought through it like a champion. She has just celebrated 12 years cancer free!
Right around the time that she was finishing treatment, I received a call from my OB/GYN about an abnormal PAP and was told to come back in for a colonoscopy. Now my fun begins!
I had high risk HPV and abnormal biopsy as well. My Doctor wanted to put me right in the hospital and do a cone biopsy, but thankfully I knew more about PAPs, HPV, and the connection to cervical cancer than ever before, so I understood how important second, third, and fourth opinions were.
I was NOT going to go blindly or quietly through this experience.
I got myself into a clinical trial that was being conducted at Memorial Sloan Kettering for women with abnormal PAPs and high risk HPV. Dr. Carol Browne was phenomenal! She treated me initially with a colposcopy, then monitoring, then when things changed, a LEEP.
As we were approaching the 2 year and no recurrence mark, I went in for an exam and began to bleed. She went into emergency mode and we did a colposcopy right then and there. Changes were occurring again in my cervix so she then suggested a D&C and additional biopsies. Thankfully, after that I went a year with no further issues and was able to follow up with a local doctor.
All was good until about 3 years ago when I had another flare up of high risk HPV. Cue the immediate colposcopy! All was negative and has been fine since then. I am thankful every day that I was able to learn what I did through my friend’s journey which assisted me in helping myself the best way possible.
That’s when I decided that if my friend’s experience could be so helpful to me and spare me encounters with bad doctors and bad decisions, I could help others too. Myself and my nurse friend sat down and co-wrote a book to help educate people about their rights as patients. It explains the importance of getting second opinions, obtaining copies of your test results and medical records, and working to understand it yourself. We dedicated a chapter just to PAP smears and what the classifications mean, as well as HPV and its correlation to cervical cancer. We explained as much as we could so women could get copies of their PAP and HPV tests and understand for themselves what it all meant.
The book was a success. Through book signings and interviews for newspapers, magazines, and radio shows, we spoke to people who were grateful for the information. We met people whose eyes were opened to what they didn’t recognize before. We realized there was a need for this information and continued our mission. We began speaking engagements throughout the state and accepted an offer to host our own TV show on a local cable network. We’ve had the show for about 3 years now and discuss important health topics, also hosting guests who share tips and information to help people become more knowledgeable in medical situations.
I began volunteering for numerous charities including cancer groups, hospice facilities, and advocacy groups. I continue my work as a patient advocate on many platforms and I believe it is what I need to do.
I went through my experiences for a reason. I have this knowledge because of my profession and I am able to speak up and do something. I will continue to share my story until my last breath, or until cancer is cured and/or medical care no longer requires intervention, whichever comes first! If I help save one life with all this (and I pray it’s millions) then it was all worth it!!”
- Corine Mogenis, Medical Paralegal, Patient Advocate, Co-Author and Co-Host, HPV Cervivor
We are much stronger together than we are apart.
That’s why our main goal here at Cervivor.org is to bring together cervical cancer survivors and advocates from all over the country.
Through research, story-telling, and community advocacy, we can help eradicate cervical cancer and change the future of women’s health. The best way we do this? Our live events, which happen only a few times per year.
In September 2015, we gather in San Diego, California for Cervivor School, a live 4-day event with expert speakers on the topics of scientific research, media, health-care, therapy, and more.
The feedback from our last round of Cervivor School has been so wonderful, we decided to poll the attendants to find out what made Cervivor School so awesome. It was a tough call with so many amazing moments, but here they are: the Top Five Wins from Cervivor School:
1. Learning about the different types of HPV and how it becomes cervical cancer.
Understanding the basics around HPV and cervical cancer is essential to healing, treatment, and recovery. This is the perfect space to ask questions, share your experiences, and hear from others in a safe, supportive environment.
2. Dispelling the myths around HPV and the HPV vaccine
Learn the truth about HPV and the HPV vaccine. Find out what you need to know to protect your family and your health. Become an advocate for the community by combatting false perceptions.
3. Understanding the long-term effects and letting go of the stigma
Cancer doesn’t just go away, and learning to live with the after-effects of cancer can be challenging. Not to mention the stigma of cervical cancer. Discover how you can thrive within this new normal.
4. How to own your survivorship and do something more with your story
Surviving cancer is a pretty big deal. Find out how to share your story in an authentic, empowering way so other people can benefit from what you’ve been through. Don’t let these lessons end with you!
5. Sisterhood! A completely different kind of support network, with people who really understand what you’ve been through
Community and relationship-building is a natural side effect of Cervivor School. Once you begin sharing your story in a powerful and compelling way, you’ll realize just how many people connect with what you’ve been through. You won’t find sisterhood like this anywhere else.
Craving this transformational experience for yourself? Join us for Cervivor School West, September 24 to September 27, 2015 in San Diego, California.
No matter what you’ve been through or where you’re heading, Cervivor School will help you navigate next steps with ease, confidence, and clarity.
This is your opportunity to learn, grow, heal, and connect with other people in the cervical cancer community. We are here for you, stronger together than we are apart.
Today I am sharing something extra special with you: A 3-part series on Cervivor TV featuring Christine Baze, pioneering Cervical Cancer Survivor and advocate, musician, and founder of The Yellow Umbrella Foundation.
Christine and I have been friends for a long time. She was the first person who got exactly what I was going through. I was honored to sit down and have such a open, honest and raw conversation with this cervivor.
- Tamika Felder, Cervivor.org
“To sit down with my original CERVIVOR sister and chat about life was amazing. I have known and loved T for over a decade. She and I are SO different and SOOOOOO the same. Tamika Felder changed my life, changed the way I see myself, and continues to motivate me to hang in there – to not give up – to BELIEVE that I can, WE can, use our pain to help others avoid feeling the same.
“As I watch us chat, I find myself smiling, giggling, tearing up and laughing out loud because I am watching two friends hanging out, sharing stories about life. Isn’t that what it’s all about? Connecting with others, feeling understood, knowing you are loved for ALL of who you are – beautiful and broken – is magical.
“For me, it’s everything.
“When I was diagnosed with invasive cervical cancer with extensive lymphatic invasion at the age of 31 after 13 normal pap smears, I didn’t know what hit me. I was overwhelmed, scared and confused. I did what everyone told me to do – hysterectomy, radiation, chemo, internal radiation… and continued to feel overwhelmed, scared and confused.
“To meet Tamika a couple years later and actually be able to talk about what REALLY happened, how it REALLY felt, what the scars REALLY look like, etc… was probably the most healing experience that could have happened for me. When you are in a medical crisis, or any kind of crisis, it can feel all encompassing and disempowering. Choosing to sing out to save the cervix was my way regaining the control I lost. Meeting T and feeling that I had a comrade, someone that REALLY understood, helped me embrace ALL the pieces of me (that were left – lol).
“Neither of us wants other people to hear this. It is as simple and pure as that.
“I am SO grateful to not be alone in this fight. I never wanted to be an executive director of a non-profit or a “pioneer” – I just wanted to live. And then I just wanted make a difference. T did the same. We both have stood center stage to talk about our scars, and how we have chosen to turn them into stars. Why? Because WE KNOW WE CAN make a difference.
“By sharing our stories, others will be motivated to use ALL of the tools in the fight against this VERY preventable cancer:
THE HPV TEST
THE LIQUID PAP TEST
THE HPV VACCINE
“These tools are SUPER COOL and help PREVENT CANCER. Period.
“HELLO!?!?!? Bueller?!? Bueller?!?
“Oh, and BTW, HPV causes other cancers in both men and women, which makes the HPV vaccine all that more amazing… 3 shots that help STOP CANCER! Think about it people.
“I’m jus’ sayin’.
“Thank you Tamika for being a genuine friend, and for creating Cervivor. You have created a place where we can be who we are and share the most intimate, painful, and inspiring moments of our lives. THAT IS AMAZING.
“Turns out, T, you and I ARE the pioneers in the world of cervical cancer survivor advocacy. Who would have EVER predicted that? Way to go grrrrrlfriend!!! YOU rock my world! And Cervivor TV reminds us that we are NOT alone in this fight. We have an army. It’s time we kick cervical cancer’s ass.
“That’s what I have to say about that.
“Rock on and on and on… and go forth and save the HOOCH!”
- Christine Baze, The Yellow Umbrella Foundation
Watch Part One of our video interview here:
“You are one of the lucky ones.”
Those words are hard to hear and probably even harder to accept. If you’re anything like me (and I bet you are), you’re ready to give me a piece of your mind, click off this blog, or even throw something at this screen.
You certainly don’t feel like the ‘lucky one’. Sometimes you can’t even remember the girl or woman you were before those dreaded words “You have cancer”. You struggle with pain, fear, doubt, insecurity, maybe even infertility and a whole host of other things. I bet you’re thinking, “LUCKY? HA, if this is luck, you can keep it!”
The truth is all those feeling are normal, natural, and hard to move beyond. They can paralyze us, stealing the joy from our lives and our relationships. Think about it for a minute.
How do I know what you might be thinking? Because I am one of you: A ‘lucky’ one! I too am a survivor.
I was first diagnosed with cervical cancer a month before my 27th birthday. I wasn’t married, I had no children, and I’d only been dating my boyfriend for 6 months. I had never missed an annual Pap since the age of 16; despite this, I was told I had cancer and a radical hysterectomy was needed to save my life.
The crazy part was my pap was normal; it never indicated cancer. It was the HPV test that led to the discovery of my tumor inside the cervical canal. I elected to have a radical trachelectomy instead. It has good results but unfortunately not for me.
Two short years later, just days after my boyfriend had proposed, my cancer returned. I was stunned. I immediately started treatment to preserve my eggs and create embryos. A week later, I got married barefoot on the beach in Jamaica, and ten days later, I checked into the hospital for a radical hysterectomy followed by both chemo and radiation.
Cancer stole my fertility and what should have been a happy newlywed year. It left me with a new, skewed reality, and a host of new challenges: menopause, radiation colitis, sexual dysfunction, and infertility. I didn’t have any idea how to pick up the pieces.
Today, it’s been 14 years since that first diagnosis and 11 years since my dreaded recurrence. So much of my life has been changed and altered because of the cancer.
However, I can finally see I am here breathing and so are you; that makes us the ‘lucky’ ones. We survived; many of our sisters didn’t. They lost their lives to this awful disease.
If someone had told me this early, I might have laughed in their face; I was caught up in my own experience. It was hard to see how my cancer affected anyone other than me. In the years since then, I have had the pleasure to know many woman just like me. Women with bright futures – some with my exact diagnosis – who battled fiercely but in the end, lost the war.
I have met families in agony, desperately trying to make sense of the death of their daughter, wife, sister, mother, and friend. I often find myself thinking “Why me? Why did I survive when they didn’t?” Neither you nor I will ever know the answer to that question.
In the early days after my diagnosis and treatment, I gave power to the pain, fear, doubt, and questions. I allowed them to consume me and the more they did, the stronger they grew.
However, the loss of these beautiful women forced me to see the reality of my situation: I still had a choice to live again. I could honor myself and my fallen sisters by living well in spite of all that cancer took. I could search for the silver lining and carve out a new life.
I want this same choice for you. I want you to live not only for yourself and your family, but for every woman who didn’t make it. Because I am sure they would trade places with any of us today.
Now we each have a difficult choice to make: Will you thrive? Will you piece together what looks like rubble and build a new, better version of you? I know if I can do it, you can do it too!
Living doesn’t mean denying your pain, fears, or doubts. Those feelings are real and need to be acknowledged, but not allowed to take over our lives. You might be thinking “Right, easier said than done” or “But you don’t understand, I have XYZ.” It’s a frame of mind. It is work. It is tough. And it is doable.
Here are a few tips:
Whether you feel like it today or not, you and I are the ‘lucky’ ones. We both have a second or third chance at life. My life hasn’t played out the way I thought it would but it’s much better.
Cancer changed the course of my life, and because of it I have:
I challenge you to figure out how to LIVE in spite of cancer, THRIVE because you can, and PAY IT FORWARD to someone else in need. Together our voices are louder, more powerful, and capable of reaching the mountain tops. We are the lucky ones.
Are you feeling stuck in your current life? Isolated and alone?
While it’s certainly not pleasant, it is common to feel this way when experiencing cancer and cancer treatment.
If you can identify with these feelings, check out this episode of Cervivor TV with April Capil where we talk about getting unstuck – and how to turn lemons into lemonade.
In the comments below, tell us: How do you get unstuck? What can you do to turn your experience into a gift of service?
Valentine’s Day, like many holidays, is not always sweet for cancer survivors.
It can serve as a reminder of what we’ve been through, and sometimes that’s painful to look at. Add to this the feeling of love being far-off or nonexistent in our life, and we may just want to skip Valentine’s Day altogether.
This year, let February 14 be a day of love to yourself and others, a day that begins a new way of life where love is celebrated every day.
Whether you are single or in a relationship, it’s a day to spread love and enjoy life’s pleasures. Recognize and celebrate all that you’ve been through, all that you’ve survived, and all that is coming to you. It is a day for gratitude for the love that is already in your life.
When Patti was going through her cancer diagnosis and treatment, her husband Freddie stayed by her side, offering love, guidance, and support. Without him, her experience would have been much more difficult.
While cancer can be as hard on our partners as it is on us, we may sometimes forget how grateful we are for their presence and how much their love meant to us during those trying times. This is a great day to tell them how very much they mean to us.
Those of us without partners may be feeling unloveable, as if no one will ever accept us or love us for who we really are. We may feel broken, ashamed, or hopeless, but we must not give up on love.
After going through my own experience with cancer, I didn’t think anyone could accept and love me, especially knowing that I couldn’t have children. Although I was extremely thankful for the support of my friends and family during my diagnosis and treatment, I am also grateful for my husband Rocky, who came into my life after cancer.
Whether you are in a relationship or single, you deserve all the love that you crave. Treat yourself. Love yourself. Celebrate with those who have always been in your corner. And know that no matter what you’re going through, or where you’ve been, you are always lovable. That will never change.
Cyber hugs and love,