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!
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,
If You Only Keep One Resolution This Year, Make it Your Well Woman Exam!
We all have excuses.
“I’m too busy.”
“It’s so uncomfortable.”
“I have to find a new doctor.”
You know what you’re too busy for? Surgery.
You know what’s uncomfortable? A chest port.
You know what doctor you don’t want to need? An oncologist.
Cervical cancer kills 4,000 women a year, and as many as 93% of cervical cancer cases could be prevented by screening and HPV (human papillomavirus) vaccination. Plain and simple, getting your annual pap smear (and an HPV test) could save your life! Your well-woman exam takes less than 15 minutes, and it is the single most effective way to detect early-stage abnormalities. You spend more time in the checkout line at the grocery store, so what are you waiting for?!
Even if you’ve only had one partner your entire life, even if you’ve never had an STD, HPV doesn’t discriminate, and the strains that cause cancer have no symptoms. The only way to know you’re at risk is an annual visit to the stirrups, so get it on your calendar now. Whatever your excuse is… just do it!
We all have #storiesfromthestirrups – fun stories, scary stories (maybe even some wild stories!)… no one likes to go out and get it done, but we have to leave our discomfort at the door. Make this year the year you put your health first.
Encourage other women to keep their well-woman exam resolution by sharing your#storiesfromthestirrups in the comments section below!
It was November, 2012 when I was diagnosed with cervical cancer. At 32 years old, I had been married for 13 years and had 2 beautiful sons. I held a successful position with the company I work for, and was just living life….or at least I thought I was. I quickly realized that life can change in an instant.
I was young when I first became sexually active. Doing the right thing, I went to my mother and asked for birth control. I began seeing my gynecologist at 15, and receiving my yearly Paps.
Between 1995 and 2012, I had received 16 Pap smears. Out of those 16, not one ever gave a positive result for cervical cancer. So when I got the devastating diagnosis after a colposcopy, then cone biopsy, I was completely confused.
How is it that I now had cancer and an appointment with an oncologist? How had this not been caught sooner? My biopsy revealed that my entire cervix was a tumor; a cancer that had begun growing on the back of my cervix, closer to my uterus. A Pap test only scrapes the surface close to your vagina.
In September of 2012, 2 months before my diagnosis, I went in for my yearly Pap. The month prior, I started having some bleeding issues with intercourse. At first it was very light and hardly noticeable. The birth control I took stopped my monthly cycles, so I thought maybe it was just some breakthrough bleeding.
Over time, the bleeding became heavier. My husband and I became concerned, and agreed I needed to see the doctor. This was only 1 month before my yearly appointment.
Since my gynecologist has a very busy practice, I scheduled my appointments a year in advance. I told my husband of my upcoming appointment and that I would address the issue then.
In the weeks leading up to the appointment, the bleeding became heavier but only happened with intercourse. It would stop very quickly, and I did not have any issues during normal life.
When I went in for my yearly exam, I talked to my doctor and explained everything I was experiencing, and she did my Pap. Looking back through my medical records, she saw that there had been no signs of cancer but I had tested positive for HPV on two separate occasions, years ago. It was like I tested positive one year, then negative for a few, and then had another positive. This never concerned her, as I had not had consecutive positive tests.
This Pap came back normal. No signs of cancer cells, no HPV. She called me with the results, and I was shocked. How was nothing wrong? I had already been combing the internet about my symptoms, and was sure it was cancer. The bleeding was getting worse, and I asked what could be happening. What else could we do?
The next step was colposcopy. This test revealed cancer cells. The Doctor took 5 samples from my cervix, and one was positive. This led to a cone biopsy.
It was November 2012 when I went in for the procedure, just one week after my grandfather passed away, 5 weeks after his wife. I was an emotional wreck to say the least.
The biopsy surgery was the first surgery I had ever had and I was scared to death. Scared I wouldn’t wake up from anesthesia, scared to leave my boys and family, scared of what the overall outcome would be.
My gynecologist, Dr. Johnson, was the most compassionate woman I had ever met in that operating room, even though I had known her for years. She knew how concerned I was and understood the fear I was carrying in my heart.
I remember being wheeled down the hallway to the operating studio, the doors opening, and what seemed like the coldest air I had ever felt. I was shaking – from the cold and from fear. On the verge of tears, but staying strong, I lay down on the table. So many people, such bright lights, small chatter everywhere. It was more than overwhelming.
Dr. Johnson had greeted me when I came in. She helped me onto the table, taking my hand in hers and standing beside me until I slipped into sleep, reassuring me with her kind words the entire way. She promised to take good care of me, and I believed she would. I felt more at ease, and loved. The last thing I remember before the anesthesia took hold was her kind face and my hand in hers.
I remember the moment when, a few days later, she phoned me with the results. How could one forget the call that would change their life forever?
My boys had just gotten off the school bus, and we were sitting together talking about their day when my phone rang. Recognizing the number, I jumped up and ran out into the garage for some privacy. I told my boys, then 10 and 6, that this call was important and that I would be right back in, but they followed me into the garage.
This was on a Friday. Dr. Johnson apologized for calling, saying that she wanted to tell me in person, but knew that if she told me then that I needed to come into the office on Monday, I would worry myself all weekend.
She told me the three words I was knew were coming, but was praying I wouldn’t hear…… You have cancer. She told me she was concerned for me, that it was invasive and aggressive, and that my entire cervix was a tumor.
Cervical cancer is one of the slowest growing types of cancer, and for my entire cervix to have been overtaken meant that I had been living with this cancer for many, many years.
My immediate fear was that it had spread throughout my entire body. Dr. Johnson had already contacted my oncologist before she even called me.
We ended our conversation, both of us in tears. When I turned around, my sons were behind me, tears in their eyes too. They were aware of what was going on. They knew I had the biopsy, and was awaiting test results. It’s hard to keep something like that from anyone.
They asked what was wrong, and I could not lie. I told them I had not gotten good results. My oldest asked if it was cancer, and I told them yes. Emotional chaos broke out between all three of us.
My husband was at work, but I called him immediately. I don’t even know how he understood anything I tried to say on the phone. I’m sure all he could understand was the word cancer. He left immediately and came home to us.
I have never cried so hard in my life. There aren’t enough words in the English language to describe everything I was thinking. A feeling of complete numbness overcame me and thoughts were difficult. My mind was going in a million different directions, and it was hard to see or think clearly.
My boys…my precious boys, I didn’t want them to lose me. It was difficult for me to believe my own words of reassurance, unsure I believed myself when I said it would be fine.
Two weeks after that call, I saw my oncologist. He became my first of many “thankfuls”. I shall call him Dr. Hunk (LOL). His name is Michael, and he is a tall, dark, and handsome man with a soul made of gold. He set me on the path of being reborn in a sense, and for that I will be forever thankful. I owe him my life.
My husband and I went into the appointment still numb. Dr. Hunk explained where my tumor was, and all of the medical garb that they say, but I don’t think I heard much. I already knew my anatomy. I had already spent countless hours on the internet researching cervical cancer. All I wanted to know was what the plan was. I wanted that cancer out of my body, immediately.
The first step was a CT scan to see exactly what we were dealing with. My second “thankful” came from that scan. The tumor was contained. It was my entire cervix, but had not grown anywhere else. It had been there for years, but had stayed put. A surgery was scheduled for January 9th.
We went home, told the family, and celebrated Christmas the best we could. I took a leave of absence from work, and received a radical hysterectomy. My hospital stay was supposed to be 4 days but due to some complications, that turned into 8 days.
During surgery, I was given two pints of blood, and another two pints a few days later while in the hospital. I had a bowel obstruction that caused my stomach to swell tremendously, and the pain and discomfort was unbearable. They ended up putting a tube up my nose, down my throat, and into my stomach to try to relieve the pressure that was building.
My pulse raced the night they put that in, and at one point I was suspected to be in cardiac arrest. They thought I might have had a blood clot in my lungs, causing the elevated heart rate, so another scan and X-ray were done.
My third “thankful” was that there were no blood clots, and I was given a second blood transfusion. A day later, they removed the tube, my heart rate went back to normal, and I eventually got to go home. Before I did, Dr. Hunk came to me with the pathology results from my hysterectomy.
17 lymph nodes were removed from around my uterus and cervix, and 2 of them had tested positive for cancer. The cancer was starting to move and I was a stage 3B. There were no tumors in the lymph nodes, just cancer cells.
I was devastated. But, this became my forth “thankful”; we had caught it just in time. Even though I was terrified by the thought of cancer cells moving throughout my body, I am so thankful there were not any more tumors.
It was decided that I would need chemotherapy and radiation treatments. I had more scans, more appointments, and another doctor.
In one of the radiation placement scans they discovered I had a blood clot in the lower main vein of my abdomen. This meant daily blood thinner shots into my abdomen for 8 weeks.
Another scan revealed a massive pelvic abscess, requiring daily IV antibiotic treatments and a PICC line placed in my arm. I gave myself the treatments at home for 10 weeks. All of these complications caused my chemo and radiation therapy to be delayed, but I finally started my treatments in March of 2013.
In May 2013 I went back to work, finishing my treatments in August, 2013. 2 rounds of chemo, 10 treatments total, and 33 radiation treatments later, I was completely cancer free. My second round of chemo caused me to lose my hair, and I was forced to see myself in a different light.
The fifth “thankful” came in July of 2013. My friends and family held a benefit for me at a state park with a small lake. The day went by so fast, but it was one of the most memorable experiences of my life.
Seeing everyone’s love and support for my family and I was amazing, and it reminded me that no one fights alone. Many of my friends even shaved their heads to support me.
My sixth “thankful” came in September 2013 when a PET scan came back completely clear. I was finished with all of my treatments, and on my road to recovery.
In January 2014, I was featured on a local news channel for a spot on cervical cancer awareness. I was thrilled to share my story. It aired several times and helped spread the word of just how important regular screenings and Pap tests are.
Along the way, I have met many other people battling cancer, and I spread my words of encouragement to everyone. Being given the opportunity to share became my seventh “thankful”.
Having cancer opened my eyes to life. I feel that I truly live now. I laugh often, cherish the memories, and make it a priority to connect with the loved ones around me.
In the past few years I have also lost loved ones to cancer. Each life lost makes me question why I am still here and they are not. Even though I am happier than I have ever been in my life, I live with guilt. Survivor’s guilt is real, and it can be a dark experience.
Attitude is everything. I have to keep telling myself that, reminding myself daily that it’s ok. I am obviously still here for a reason, and I plan to make the most of it.
I have been told by many that I am an inspiration, and I plan on living up to that every day. I now walk with my purpose, my head held high.
One thing Dr. Hunk asked my husband and I in our initial visit was if we were done creating our family. We have two wonderful boys, but we both always wanted a little girl. We always felt we couldn’t afford another child, our house was too small, and that we just shouldn’t.
Now, the decision was being made for us: no more children. Up to this point, I had not read any other stories from others affected. I was oblivious to how so many women never get the chance to have even one child due to cervical cancer.
I am beyond blessed that I have my boys. They are my main purpose in this life. My husband and I divorced earlier this year. We had many struggles, and I think my illness pushed us over the edge. We lived many years angry and upset in the marriage.
The divorce became my eight “thankful”. We are no longer in a relationship surrounded by anger. I have never stopped loving my husband, and I never will, but now I can be happy. Many trials have been presented to me over past couple of years. Each one has opened my eyes, taught me a lesson, and centered me. Each one has made me a better person.
My fight was difficult, but it taught me that I wasn’t living my life the way I should have been.
Now, every day is a “thankful” to me. I am beyond blessed to still be walking this earth. I can hold my babies every single day, even though they are bigger than me now. I find beauty in everything, maintain a positive attitude, and I look forward to a future.
At one point I was very unsure of having a future at all. I mourn those who have lost their fight, and pray for all that are still fighting. I may not have cancer in my body at the moment, but I still fight.
As much as I hate cancer, it was a blessing in disguise for me. I am a much better, stronger loving person because of it.
by Melissa Beeson
Sometimes I wonder why people are so quick to let the world know their bra color to support breast cancer, change their profile picture to a cartoon character to raise awareness about child abuse, or even take an ice bucket challenge in support of ALS without knowing what ALS is, yet few talk about the issues itself.
So you posted your bra color on social media; did you talk to someone about breast cancer prevention or monthly self-exams? Probably not.
Your profile photo is a cartoon character; did you talk to your friends about child abuse, or volunteer your time to a charity that helps children? I dare say most of us didn’t.
The famous ice bucket challenge… How much money did you donate? Since taking the ice bucket was the alternative to donating money I’m going say that very few people donated any money for research.
Despite that, it seems so much easier for people to do these things than talk about Cervical Cancer. It makes me realize that despite how progressive and evolved we think we are (a society that fights for a woman’s right to choose, marriage equality, and other things we wouldn’t have dared to think about in past years), there is still stigma surrounding HPV and Cervical Cancer.
Well, I want to talk. I want to talk about HPV and Cervical Cancer. I want to do more than just raise awareness. After all, you already know Cervical Cancer exists; I want to bring the topic to the open. I want to share what I know, what I lived, so you and your family and friends don’t have to go through it.
Most people don’t think they will be affected by HPV and/or Cervical Cancer
until they hear the dreaded words “You have cancer”, or see a friend fighting for her life.
In the last few weeks I’ve heard people tell me “My daughter won’t get HPV because she is a good girl, she’s not going to have pre-marital sex” or “This is the first I’ve heard of HPV” or “I haven’t had a pap smear since I had my last baby who is 7 years old now.” To me, that is scary as hell, and that’s why I feel the need to talk about it.
HPV and Cervical Cancer can affect anyone, and I mean anyone. I’ve known women who’ve had only one sexual partner get HPV, and prostitutes that tested negative for it. If you think this is a disease of the promiscuous, just as AIDS was thought of in the 1980s, think again.
If you have a vagina, you can be affected. Guys, HPV touches men too. Ever heard of penile, anal, or oropharyngeal cancers?
At least 79 million people are estimated to be infected with HPV; most of them don’t even know it. It is a scary number, and yes, it is a scary virus that can have devastating consequences. However, there are things that you can do to protect yourself and your children from the risks of HPV and Cervical Cancer.
Come see the movie. Invite your significant others, friends, daughters, sisters, brothers; make it a group outing! Imagine if 100 people came to the screening… that would be 100 more informed people in the area; 100 individuals sharing with their families and friends what they saw and heard. It would translate into more people taking control of their health.
Maria Franklin is a 15-year cervical cancer survivor who is excited to be attending Cervivor School.
“Someone You Love: The HPV Epidemic” will be showing in Milwaukee, Wisconsin on January, 21.