Tag: women’s health

The HPV Vaccine: Thoughts from a Cervivor

Recently I’ve heard and received questions concerning the HPV vaccine (Gardasil 9 is what’s most used in the U.S. currently). As my own daughter gets older, I’m sure I’ll hear the questions more and more because her and her friends will be getting closer to the recommended age. So, after offering an answer to a friend of a friend the other day, I thought I’d write my thoughts to offer more understanding.

I always start by telling people that I was always nervous about vaccines since my daughter was born over eight years ago. The large quantity of vaccines given all at once for babies terrified me. After lots of reading and discussions, our pediatrician worked with us on a delayed vaccine schedule, offering only two vaccines at a time instead of the recommended schedule (often give 4-6 at a time). She’s received all her vaccines up to this point, and as she’s gotten older I’ve become less nervous because I feel her body can handle more.

I start off by telling people that bit of background because I want them to realize that I’ve been in that mindset, worried about what’s being injected into my child. Worried about potential side effects. When the first HPV vaccines came out more than 10 years ago, I was skeptical about it being released so quickly. But, at that time, I just missed the age cut off for getting it. Go figure that not long after the vaccine and HPV became so public, I found out I had HPV. That was June 2007.

My HPV was discovered after a Pap test came back abnormal. Those same collected cells were tested for HPV, and there it was. At that time they didn’t really tell you what strand you had, just if it was high risk or low risk. Mine was high risk. For quite a few years I went back and forth for extra Pap tests, colposcopies, and biopsies in order to keep an eye on my cervical cell changes. At times I had perfectly normal results, then abnormal, and then normal again.

Then, in July 2014, I was diagnosed with cervical cancer caused by HPV. I’ve heard cervical cancer called the “easy cancer”. Please, don’t be fooled. Cervical cancer, like all cancer, SUCKS. No matter what your treatment, your body goes through a lot, as does your mind. For me, it was a radical hysterectomy the day before my 35th birthday followed by five rounds of chemotherapy and 28 rounds of external radiation. I’ve come to make many friends through cervical cancer groups, some of which have left this world because of their cancer, others who are living with cancer, and more that are struggling with the after effects of cancer. I’m now almost three years NED (no evidence of disease), but cancer changes your life in many ways that are endless.

The HPV vaccine was created to help keep future generations from getting some of the most problem causing strains of HPV. Some of these strains cause genital warts, but others have been known to cause 90% of HPV-related cancers, which include cancer of the cervix, vagina, anus, mouth and throat.

I’ve heard fears that the vaccine is “too new” or “hasn’t been studied enough”. Let me tell you that the HPV vaccine has been around for more than TEN years. I’ve heard others worried about stories of side effects they’ve seen on social media and the internet. To those people, I beg you to look at the sources of those stories and then to look for articles and case studies that have reputable medical sources. You’ll find that thousands upon thousands of doses of the HPV vaccine have been given with the only adverse effects being swelling and discomfort at the sight of injection. This is an “adverse” effect of just about all vaccines.

Another thing I’ve heard is that as a parent you’ll instead just teach your child about safe sex. Well, I certainly hope you will, because that’s an extremely important part of our job as parents. HOWEVER, safe sex does not fully protect against HPV. HPV is transferred via skin to skin contact. This means you can get it from intercourse, anal sex, oral sex, and sexual play. And condoms, as wonderful as they are, do not cover the entire genitalia, which means there’s often still skin touching skin, which means a chance of infecting a partner with HPV. And since often HPV doesn’t show symptoms, especially in men, you can’t be sure your partner has it.

I’m not looking to tell parents what to do, but what I hope they’ll do is educate themselves and talk about the vaccine with their pediatricians. If the HPV vaccine had been around for ten years when I was a preteen, maybe I wouldn’t have gotten cancer three years ago. Maybe I could have had more children like I’d hoped for. Maybe I wouldn’t be in menopause in my thirties. Maybe I wouldn’t have to worry about my cancer returning or my husband someday getting some kind of HPV-related cancer.

But maybe because of this vaccine, so many girls won’t have to go through what I did. Maybe we won’t have to lose more lives to HPV-related cancers.

There’s much more I could tell you, facts I could offer, but instead I leave you with this. August is National Immunization Awareness Month. When you go to the pediatrician to get your child their check-ups as school is starting, ask about the vaccine and if it’s right for your child (I know pre-existing conditions or allergies can be a factor). And even if it’s not time for your child, the more we learn and understand as parents, the better we can make decisions that can protect our children. If you could prevent your child’s chances of getting cancer someday, if even just a little bit, wouldn’t you?

For more information about the HPV vaccine:

If you have further questions concerning the HPV vaccine, please feel free to reach out to myself or the Cervivor organization. Please also follow the NJ Cervical Cancer & HPV Network and Cervivor on Facebook.

The Emotional Side of Cervivor School

In last week’s post I discussed all that happened during Cervivor School 2017 in Delray Beach, Florida. But I wanted to also touch on the emotions I felt during this year’s Cervivor School experience.

During Cervivor School, we not only receive a vast amount of knowledge concerning cervical cancer, HPV, HPV-related cancers, and the HPV vaccine. But we also learn a lot about ourselves as cervical cancer survivors (Cervivors). When I was diagnosed with cervical cancer in the summer of 2014, I didn’t know anyone personally who had gone through cervical cancer. I had never experienced seeing someone go through any type of cancer. I had met women through online support groups, but being in a room surrounded by women from around the country who’d gone through similar scenarios stirs up a ton of feelings.

When I first arrived I got the chance to see women I’d met during Cervivor School Louisville which was absolutely amazing. Many of us had shared such a deep connection at that school, that getting the chance to be together again was joyful. And then as the long weekend moved forward I made even more bonds with women I’m now proud to call my friends. With a Cervivor School as big as this one, I didn’t get to talk to everyone as much as I would have liked to, but hope to grow more friendships as we connect through social media moving forward.

But let’s get into the nitty gritty of it. Cervivor School, for me, means plenty of laughs and smiles and equally as many tears. During this event you discover so much about what other women have gone through, but also about yourself. In attendance were women who had been NED (no evidence of disease) for many years, some who had just recently completed treatment, and some who were living with cancer. All of our stories were different in one way or another, but in the end we were all “Cervivors”.

For me, it’s been almost three years since I got the phone call and heard the words “you have cancer”. In all honesty, it certainly doesn’t feel like it’s been that long some days, and then other days it feels like it’s been even longer. I think about cancer in some way or another at least once a day, though most days it’s more than that. So when going to Cervivor School I’m prepared in knowing that my emotions will stir because my cancer will be fully on my mind again, and that’s okay.

I cried when I heard other women’s stories of their cancer diagnosis and what they’ve been through since. I cried hearing those who spoke of living with cancer, mostly because it’s hard to understand why I’m okay but they still have to deal with cancer. I cried coming to new understandings about myself and being reminded that “it’s not my fault” (thank you again Dr. Castle). I cried thinking of the women in other countries who do not have the care necessary to get yearly well-woman exams that help prevent cancer, or who have cancer and treatment options aren’t easily available. I cried remembering that I’m not alone in all that I feel.

But I smiled and laughed so much more. I smiled spending time outside the “classroom” as I made new friends, some who I consider best friends today. We spent time by the pool, had meals together, and hung out on the dinner cruise (while I prayed I wouldn’t get motion sick). We talked about our lives outside of cancer and where we came from.

And then we cried when it was time to leave each other. I looked forward to returning home, I missed my family, but I was leaving my sisters.

Since my cancer journey, I question many things. I haven’t felt like I have many close friends to confide in or to just hang out with and get a drink or a cup of coffee. My social media friends are in the hundreds, but those I see face to face are in the single digits. Maybe that’s my fault, who knows. But when I was at Cervivor School, for five days I didn’t feel quite so alone. I had sisters; women who held my hand or hugged me when I was sharing something sad or difficult. Women who’d just met me, but welcomed me with open arms. I miss them since leaving Florida just over a week ago, and I wish some of them lived closer. Yet I know in my heart they’ll always have my back as we move forward in our Cervivor journey. I hope they know they mean the world to me.

What Could Have Been…

So this is a longer blog post, but it was almost therapeutic to write for me. In two years since my cervical cancer diagnosis, I’ve wanted to write my original gynecologist a letter. I don’t know if I’ll ever send this to her (I’m keeping her name out), but I felt it might remind others to ask questions and to never assume your doctor is doing what you thought was right. This is your body, your life. Ask questions and be persistent, no matter how well you know your physician.

Dear Doc,

Since I haven’t heard from you in over two years, I thought I’d write and let you know I am well. I am cancer free since the end of 2014 after undergoing a cone biopsy in July 2014, a radical hysterectomy the day before my 34th birthday in August 2014, and then five rounds of chemotherapy and 28 rounds of external radiation that ended in November 2014.

In September 2014, my daughter started Kindergarten, my daughter who you helped bring into this world via c-section on January 2009. She started less than a week after my hysterectomy. I still had a lot of discomfort and a catheter from the surgery. I tried to hide the tears as my family pushed me in a wheelchair so I could “walk” with my daughter on her first day of school. During treatment I missed attending some of her first school activities because it would have been dangerous to get sick.

Back then my daughter didn’t understand much of what was happening. She still doesn’t really. She asks why she can’t have brothers or sisters like many of her friends. She can’t yet comprehend that what made mommy better, what got rid of the cancer that could have killed me, also took away my fertility.

I’m telling you all of this because you need to know it. I need you to know what I went through, and I need you to know that I’m angry about it. I’m angry that when I came to you in November 2013 and complained that I was having some bleeding after sex, you told me I had a sensitive cervix, probably due to changing hormones. The only tests you did were swabs for infection. I’m angry you didn’t do a Pap test based on the knowledge that over the previous few years my tests had been clear. I’m angry that with my history of HPV (since 2007), abnormal Pap tests and multiple colposcopies/biopsies, you didn’t consider that a Pap test was warranted even though bleeding after intercourse is a symptom of cervical cancer, in which more than 90% of cases are caused by high-risk strands of HPV, one of which I have. I’m angry that I went on for almost a year thinking that the bleeding I was having was due to my “sensitive cervix”. I’m angry that when I returned in July 2014, less than a year later, it was so obvious that something was wrong the moment you did an internal exam and had to do a biopsy. I’m angry that less than a week later I had to get a phone call that I had cervical cancer. I’m angry that there’s a great possibility that my cancer could have been caught almost a year sooner if a Pap test would have been administered when I first complained of the bleeding.

When I was first diagnosed you offered your cell phone number, told me to text or call if I ever had questions or needed to talk. You made me feel like you were there for me through this horrible ordeal and that made me feel good. For a while you seemed genuine. You would answer my messages or voicemails fairly quickly based on your schedule. But as things progressed in my cancer journey, you stopped answering. It was hurtful and it was wrong. I often wonder if it was because you knew you’d messed up.

I went through a lot during my cancer journey, I still do. I was out of work during the months after my surgery and during treatment to allow my body to heal. My husband was also out of work during part of this time, so we had very little money coming in and a family to feed and a roof to keep over our heads. But at least he could keep me company during some of my chemo and radiation. We made it through with help from our loving and supportive family. I developed quite a bit of anxiety that I still take Xanax for; it doesn’t stop me from being fearful that my cancer will return, but it does soften the horrible panic attacks I’d been having. I’ll always be scared that cancer will come back, that I won’t get to see my little girl (who just celebrated her eighth birthday by the way) grow up, get married, and have children of her own.

I am currently NED for two years and my amazing gynecologic oncologist feels I’ll remain that way. I can only pray he’s right and that I get to live to be an old woman. But even though I am healthy, which I thank God for every single day, I am still angry with you. People have suggested I file a law suit, that your not performing a Pap test based on my history and symptoms was malpractice. I’ve considered it multiple times, but what would it fix? Yes, we could certainly use the money, but would it truly help anyone?

I’m writing you this letter because you need to know that I’m alive and I’m thriving, but that it could have been worse. I need you to know that I always wonder how things would have been if you had performed a Pap test on me when I first came in and discussed with you that I was bleeding after intercourse. No one can know what would have happened, but considering it was almost a year before my cancer diagnosis, I often think my treatment would have been far less invasive. Maybe a LEEP or cone would have been enough to rid my body of cervical cancer. Maybe I could have avoided a full hysterectomy, chemo and radiation, and could have had more children. Maybe I wouldn’t be in full blown menopause in my mid-30s. Maybe I wouldn’t have severe panic attacks.

But you can’t go back and change what has already happened. I can only be happy that I’m alive and healthy and able to see my beautiful, intelligent, compassionate daughter grow. That I can enjoy everyday to its fullest. But you need to know that there are other women out there like me who will trust you and take your words without questioning them. You need to know that a Pap test is warranted whenever a woman with a past of HPV comes in with even the slightest possible symptom that could signal cervical cancer or precancer.

I am an advocate with Cervivor now, a non-profit organization that educates women about HPV and HPV-related cancers. I’m using my story to help women understand these diseases and their bodies, so maybe they won’t have to go through what I did. I’m using the worst and most difficult thing that has ever happened to me, to help others.

I hope you understand that when I hit my five year NED mark that I will not return to your office. I hope you know that when someone tells me they’re a patient of yours, I ask them to be cautious and consider seeing someone else. Because I’m angry and because I worry for them. I know in my heart that you are a good person, but I also know that there’s a pretty good chance that my cancer journey could have been at least a little easier had you done the right testing in the first place. I hope you’ve already learned from my story when you surely heard from my oncologist, who you recommended, that I would need invasive surgery and then further treatment. I hope it made you stop and think and regret enough that you’ve been more diligent in the care of other patients.

Cervical Cancer Awareness Month

If you didn’t know, January is Cervical Cancer Awareness Month (CCAM). It is a time for us to remind women how important it is to get their annual well woman check-ups and a time for us to remember the women who have gone through cervical cancer or who we have lost due to cervical cancer. I could go into all the details of cervical cancer, HPV, and prevention, but instead I’ll suggest you read up on it yourself at www.cervivor.org.

This post is going to remain short. Tomorrow, January 31, is the final day of CCAM. Many women I know from Cervivor have been busting their butts on social media, through local community events, and on blogs to advocate so more women are better educated about cervical cancer and HPV. We “Cervivors” are saddened when yet another woman is diagnosed and has to go through what we’ve gone through (and may still be going through). We strive to inform and communicate with our friends, family and total strangers in hopes that we can prevent even just one more case of cervical cancer.

What I ask is that, no matter who you are or if cervical cancer has affected you on a personal level or not, on January 31 you go to work or school or the grocery store (or wherever your day takes you) wearing something teal and white, even something small.

Some may wonder what wearing particular colors for just one day can do… It offers support to women diagnosed with cervical cancer. It offers understanding to women who are Cervivors. And it can offer a reminder to women who may be at risk to make an important appointment and to listen to their bodies.

Wear it proud. Show it off. And remind the women in your life to keep up on their well woman exams so we can reduce the number of women being diagnosed each day. And remember, cervical cancer doesn’t care about how old you are.

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To My Daughter on Her 8th Birthday

Eight years ago I waited anxiously for your arrival, nervous and scared of becoming a new mother. The moment I saw you I was enamored by the amount of love one person can have for another. Everything about you was perfect, and still is. Watching you slowly grow into an intelligent, brave, compassionate young lady has been the most amazing part of my life.

Just over two years ago I feared I wouldn’t get to see more of your birthdays. When I was told I had cancer I immediately thought the worst, and you were the first thing that popped into my mind. How could I leave my beautiful little girl? But as I moved through surgeries and treatments to kill the cancer that had invaded my body, you became my strength. And you didn’t even know it. You didn’t know what cancer was, only that I was in pain or didn’t feel well. You didn’t know I was scared, but you knew to snuggle me or give me kisses.

You were my reason for living and fighting to kick cancer to the curb. I thought daily about the possibility of not getting to see you celebrate another birthday. I cried at the notion of not seeing the woman you are bound to become. Every fear I had was rooted in my love for you.

You still don’t know just how sick mommy was two years ago and I pray you never have to see me that way again. I know you can’t quite understand it yet, but someday I will explain it to you. I’ll explain how a virus caused cancer to invade my body. I’ll explain how it was the reason I couldn’t give you the brother or sister you wanted. And most of all, I’ll tell you how you helped make me better without even knowing you did. My reason for fighting was you, and it always will be.

In a few years I’ll read this to you, when I know you can understand it. I’ll tell you how every birthday I help you celebrate is more special to me than I ever considered before. Thank you for being the light at the end of a tunnel I feared would engulf me. Thank you for showing me how much love can push us forward.