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!
“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.
Ever since I can remember, Thanksgiving, Christmas, and New Year’s has been a special time in my family. It’s filled with traditions, love, being grateful, and always feeling blessed and thankful for everything. We celebrate by being together, giving each other gifts, serving delicious food, and of course always having a beautiful Christmas tree.
In the year 2008, these holidays were very different – I was shocked beyond belief when my doctor gave me a cancer diagnosis. That particular moment is vivid in my mind, but the moments after the words “You have stage IIB cervical cancer” are a blur. It was mid-November, right before Thanksgiving, Christmas, and New Year’s.
Needless to say, I wasn’t in the spirit for any of the holidays after receiving such a diagnosis. Everything had gone dark. I thought, “Thanksgiving??? What do I have to give thanks for? For having cancer?” Focused only on the words of my doctors, I was forgetting about the rest of the many blessings around me. I was giving up before I even started to fight back. For me, it was the beginning of the end.
I went into a cocoon, asking myself over and over, “What did I do wrong to deserve this?” I didn’t want to see anyone, not even family or friends. That year, there was no giving thanks on Thanksgiving, no beautiful tree or gifts for Christmas, no party or champagne cheers for the New Year. What was the sense of doing all that if I felt uncertain about my life? I was facing my own mortality.
It took a while for me to feel ready to fight back. I was fighting for my life, and I was really scared. I even questioned my own faith, but God gave me the support and strength to endure. It was a difficult journey, but I won the battle – I got a second shot at life.
Now, I don’t question anything. 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. I live and celebrate every day as if it was New Year’s day. There is 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, and I really don’t sweat the small stuff. Life is good!!
After going through this experience, I want to share my story with other women and let them know that my journey does not have to be theirs. I want to pay it forward.
In 2014, I was fortunate to have been chosen as one of the survivors to attend Cervivor School. This is a life-changing event that trains women in impactful storytelling, teaching the most essential facts about HPV, cervical cancer, and prevention. Cervivor School supports women in becoming cervical cancer advocates and changing the future of female health.
I had an awesome experience at Cervivor School 2014, becoming empowered with knowledge in so many different areas. The support of my survivor sisters is beyond anything I could imagine, and I’m now a SURVIVOR turned ADVOCATE, committed to helping eradicate cervical cancer for good!
I want you to know that you can get through this, and we are here for you. Together, we’ll make a difference.
~ You gain strength, courage and confidence by every experience in which you really
stop to look fear in the face. You are able to say to yourself, “I have lived through this horror. I can take the next thing that comes along.” You must do the thing you
think you cannot do. ~ Eleanor Roosevelt
Wishing Everyone a Very Healthy New Year 2015!!
Cervivor Patti Murillo-Casa
When I was diagnosed with cervical cancer, I never planned on becoming a patient advocate. In fact, it was the furthest thing from my mind.
I was 25, single, childless and scared. This was 2001 and no one was really talking about HPV. I had never even heard of it and I pride myself with being “in the know”. Hell, I was even working on a national award winning health show and it wasn’t a topic that we discussed.
As I healed from my surgery and prepared for radiation and chemo I still never thought about sharing my story. It’s ironic, because as a television producer that’s what I am – a glorified story teller. But this wasn’t a story that I wanted to share.
I was ashamed and just wanted to put it all behind me.
So I did. Or at least I thought I did. Slowly, I began pouring myself back into my work and started the grind of networking. I went back to being that social butterfly that my friends and family had always loved.
But something was different. I was different. My life had forever been changed. As much as I tried to put the pieces of my cancer riddled life back together, it just didn’t happen. The pieces no longer matched up perfectly. I didn’t fit into my own world. My energy level wasn’t the same and I thought about my experience constantly. I wondered why no one was talking about cervical cancer.
It took me three years to accept that I had cancer and it had rocked my perfectly planned world. I was one of those people who had everything planned out and cancer was not in the plans – when is it ever? But it happened and thankfully I survived — so I had to live — really live.
And so I did. Part of living my best life after cancer was doing something for those that would come after me. Like helping them to avoid the isolation that I felt as a woman with cervical cancer.
The more involved I became in the cancer community, the more the pieces of my life began to fit back together – but some of them took a new form.
When I look at the cervical cancer community, I see only a handful of women sharing their stories. I always wonder why more women aren’t speaking up. Is it because of the stigma of HPV? A lack of time? Or do they think that their voice doesn’t matter?
Whatever the reason; we need your voices.
Tell me: What’s holding you back from sharing your story? We need patient advocates to help combat this disease. We can’t leave it to the clinicians and researchers and Congress. We must have a seat at the table. We complete the puzzle to eradicating this disease. We are the messengers. Will you join me?
There are two ways you can help:
1) Take this survey and let us know what you need and expect from our community.
2) Join us at Cervivor School this coming January in Austin, TX.
I won’t stop until we put an end to this cancer – because together, I know that we can.
In this month of November, we celebrate Thanksgiving and all of the things we are thankful for. I am so thankful for the time I had with my mother and that I could take care of her while she suffered from cervical cancer.
My mother was a Catholic school teacher at our local church. She was also very involved in our church community. She volunteered for so many things, and she made my brothers and I volunteer too. Because we were children, at first we did not want to volunteer, but after a while it became natural to us to become involved in our community. My mother showed us that to give our time, and labor to others was an expression of gratitude for our blessings.
I learned some of life’s hardest lessons when my mother was diagnosed with cervical cancer. She was first diagnosed when I was in high school. Although she had treatment, the cancer came back aggressively two years later. 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 had to do things that none of my friends could relate to. It was hard for me to understand. Although she let my aunt sleep, when she needed something she woke me up. 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 sleep interrupted 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. Unfortunately, my mother succumbed to cervical cancer and died on March 31, 1996.
My life without my mother has been a tribute to her and what she taught me about helping others. Many times in my life there have been things that are rough, and I push through them. Many times I want to give up. Sometimes I am having a bad day, and someone will need my help and I want to say no. But I think about that day, when I held my mother’s hand and sang I feel like going on.
When I learned about Cervivor, and how I could make sure that people knew about cervical cancer, I felt my mother pushing me to be involved again. Before Cervivor, I had so much unresolved grief and unanswered questions about what really happened to my mother. Cervivor help me settle some things within myself, and fulfill the need I have for service to honor my mom.
The men and women who are part of Cervivor are phenomenal. I am so thankful for them and the love they have given me. Cervivor has once again, made me believe that I can go on. I can go on and fight cervical cancer.
By Lillian Walker Shelton
November is Native American Heritage Month. Cervical cancer affects American Indian women 2 to 5 times more often than women from other racial groups.
What follows is a personal story of cervical cancer survival from Beverly Bushyhead, MA, MPA, of the Eastern Band of Cherokee Indians.
How I Learned to Live for Myself
By Beverly Bushyhead, MA, MPA
When I learned at age 40 that I had stage III B cervical cancer, it sounded like a death sentence. I remember thinking, My children are too young to be left alone! Because the 10 cm tumor on my cervix was inoperable, I would receive lots of chemotherapy and radiation. The only survivor with similar staging and treatment to mine wouldn’t talk about it—the experience had been too horrible.
The survivor was right. It was horrible. At first, weekly chemotherapy and daily radiation were easily managed. But weakness and radiation burns caught up to me—showers became unbearably painful. Even baths hurt terribly, and black burned skin would float to the surface. I would sit in the water and cry. I apologized to my body. I thanked it for all it had done: carrying my children through pregnancy, feeding them and always serving me well. One day, I realized that my body was me—it wasn’t something separate going through this. All of me was experiencing this.
Immediately, I went into a series of traditional ceremonies with my community. During sweats, I pictured the tumor melting. My children sang healing songs. But I didn’t pray for instant healing—I prayed for strength and clarity. At the sun dance, where prayers were said for me, I received items like eagle plumes and prayer ties. The water ceremony was also very powerful—and the hospital showed respect for it. I can never forget the amazing change the ceremony brought to the lymph node surgery I had less than an hour later. My traditions are everything to me, and they were what I held onto during this time.
Some people avoided me. One relative had three checkups because she feared she could catch cancer from me! There was judgment and whispering. Folks didn’t know what to do. Others helped, though, donating food and time. Still, I drove myself to every radiation treatment and most chemotherapy treatments. It was exhausting and lonely.
Some people in the community felt I should refuse chemotherapy and radiation treatments and use only traditional, spiritual practices. Others thought I should ask for a miracle. Some said traditions wouldn’t work if I chose medical treatments. I was terrified to die. I had to do what I thought was best.
My final treatments involved the surgical implantation of radioactive material and the insertion of seven needles filled with iridium into my sensitive, burned skin. Radiation to the max. Lead panels were placed around my hospital bed, and radiation was measured every 30 minutes. I awoke with a button in my hand to deliver morphine, a governor preventing overdosing. It was comforting to push that button—the pain was excruciating. I was devastated to learn that the first of the two operations had perforated my uterus and would have to be repeated the next morning.
It hurt to stretch. It hurt to move. It hurt to breathe deeply. So I tried to lie very still. The sun shone through the window. I could feel the warmth on my arm. I was grateful for the distraction from the pain. I was completely enveloped in the growing warmth of the sunlight. I let my mind linger on how it felt. I closed my eyes. In that moment I was completely happy. It was a startling revelation: If I could be happy in the middle of a horrific experience, then happiness was a choice I could focus on.
Initially, I had been going through cancer treatment for my children—my son, age 13, and twin daughters, who were 9. One of my daughters said in the beginning that she’d kill herself if I died, so I’d started a support group for kids with a parent experiencing cancer to provide coping skills and information. But after many personal, humbling and painful parts of going through treatment, there came a time when I was doing it for me. I wanted to live! And no matter how it turned out, I was here now.
My sweet children ate meals by my bedside. Even after I returned to bed and was sleeping, it was the most wonderful joy to hear them talking and laughing near me. I always wanted to be with them if I could. As I recovered, I finished my bachelor’s degree because I couldn’t die without finishing it! Then, over the next 5 years, I went on to earn two master’s degrees. Now, whatever’s on my list, will not be ignored.
My children, now 24 and 20, are grown up. I am grateful to see them as amazing and wonderful adults. It is an honor and privilege to be their mother.
I continue to deal with effects of all that radiation. Perhaps it’s the price for survival. But I’ve learned to love myself. And I learned how strong I am.
American Indians say a people are not defeated until the women’s hearts are on the ground. Well, I am determined to sing my song until my last breath.