Author: mycrazywordfilledworld

To My Daughter on Her 9th Birthday

Nine years ago I was in labor after waking in the middle of the night with contractions. Nine years ago I was told you were stuck and taken into surgery to have a C-section. Nine years ago I cried when they lifted you up so I could see you and your daddy held you first because I wasn’t able to yet. Nine years ago you came into our world and made it brighter and more promising.

Today, you headed off to school, a special treat to share with your third grade classroom in tow, and an excited smile painted on your face. Today, at exactly 12:36 p.m. you are turning nine. With another year behind us, and so many more ahead, these are my thoughts and dreams for you as you keep growing…

  • You are never going to make everyone happy, so don’t try to. Don’t attempt to be the person they want you to be just to be a part of their group or clique. Be the person your heart is telling you to be. We are all different, and different is good and so much more exciting then being like everyone else.
  • Learn who your true friends are, and fight for them as they would for you. You will come across many people in your life, but it’s the ones who will cry with you when you are sad or stand up for you when someone else is treating you badly that are truly the most valuable in your life. Don’t let those valuable people go, you will regret it later.
  • Concentrate and take the time to learn. The older you get the harder school gets and the more you will want to rush through classwork and homework to do “fun” things. But what you’re learning matters. Through learning our brains grow and thrive. You are already so incredibly smart and the more you learn the more opportunities will unfold for you when you are older.
  • Play and laugh. Hard work is important, but so is fun. Spend time with your friends and be silly. Play a game with your father or me, even if you’re better at it than us (or vice versa). Those moments will create a lifetime of memories.
  • Keep moving forward. Mommy didn’t get that tattooed on her shoulder for no reason. No matter how difficult something may seem, do not let it stop you from pushing through it. It doesn’t matter what it is, you can overcome any challenge. But if it feels relentless, we will help you.
  • Never let ANYONE think you are unworthy. You are exceptional. Know that in your heart. Know that no one has the right to touch you or hurt you. No one has the right to make you feel like you deserve to be harmed. As a young lady, and someday soon enough a young woman, know your worth is great.

You are already so loving and compassionate, far more than others may see right away. I could not be more blessed than to have you as my daughter. You are why I keep moving forward. You are why I keep playing and laughing. You are why I refuse to be anything but myself. You are why I know the true strength of love.

Happy Birthday.



Be an Advocate on Your Terms

About a year or so after my treatment for cervical cancer I came upon a non-profit advocacy group named Cervivor. I started following them on social media and willingly shared my cervical cancer story to their website for them to publish. Since my diagnosis I had been looking for a way to use my story to help other women in some way. Cervivor looked like a great place to move forward in doing that.

And then I learned about Cervivor School, a weekend long event that helps cervical cancer survivors learn how to be better advocates as well as an opportunity to become part of an understanding and supportive community.

In the last two years I attended two Cervivor Schools. The first was in Louisville, Kentucky in 2016. It was exciting to have the chance to go after being selected to receive a scholarship from the organization. While learning valuable information about cervical cancer and HPV (human papillomavirus), I also met women who understood what I had gone through both physically and mentally from cancer. I headed home with a new found confidence in myself and my ability to have my story matter.

When the 2017 Cervivor School came around, I didn’t think I’d be able to attend due to the expense and knew I couldn’t apply for another scholarship after having received one the year before. But in the time since the last school, I’d been assisting the organization by proofreading and editing blog posts and other stories they’d been sent from other cervical cancer survivors. So I was offered the chance to attend Cervivor School in exchange for assisting with social media during the event. I accepted with even more excitement in my heart than the previous year.

So to Florida I went. I was given the passwords to their Facebook, Twitter and Instagram accounts as they trusted me to post on their behalf for the weekend. During that long weekend I didn’t just work. I was invited to sit on a panel and talk about how I coped during my cancer diagnosis and treatment, which was normally way out of my comfort zone. But I was honored to be asked, so I sucked it up and sat up there with other survivors I’d come to know and respect. I made even more friends that weekend and left Florida feeling a heightened sense of community and friendship.

About two months later a post was made in a private group for Cervivor advocates about some dishonesty that was potentially happening with one of the young ladies who’d been part of the group. It was someone I’d spoken to personally a few times since meeting her, and instead of believing everything that was said, I confronted her directly and was given an explanation I was comfortable with. Maybe I was wrong and lies were told, or maybe I was right, but she remained on my social media friends lists even when we hadn’t spoken since October of last year (I don’t feel the need to go through my friends list often).

Fast forward to last week when I thought things were status quo. New allegations were made that shocked and surprised me. But I guess I didn’t move fast enough after they were suggested late one night. I didn’t unfriend or unfollow someone I hadn’t talked with in months and the next morning I was banished. The word banished may sound extreme, but it’s exactly how it felt. Removed from the private group for Cervivor advocates. Blocked from the organization founder’s personal page, the woman who only five months earlier entrusted me with her organization’s social media accounts and website text. And unfriended by women I had once respected and considered friends from what appeared to be a loving community I’d been part of for two years.

No discussion.

No questions asked.

Just thrown away as though my time with Cervivor was meaningless.

I guess someone assumed I was offering information to someone who was a problem. Or maybe I wasn’t fundraising enough or posting about Cervivor enough on social media during the busy holiday months or during my husband’s recent surgery. Either way, to assume anything without talking directly to me feels like a disgraceful misuse of power in what is meant to not only be an advocacy group, but also a loving community for CANCER SURVIVORS. I later found I wasn’t the only one who was pushed out.

But, live and learn, as my mother says. The explanation I’ve written above is for anyone who tossed me aside already without question and for those who are wondering what happened (something I’m still unsure of). Isn’t it good to always know more than one side?

But this post isn’t to tear people away from Cervivor or to tell other cervical cancer survivors not to get involved with the organization. You can find that elsewhere. Though I’m currently sad and feeling mistreated and underappreciated, I’m still happy I was part of Cervivor. Through Cervivor I met some wonderful people who I’m proud to call my friends. And I learned valuable information about cervical cancer, HPV, advocacy and health. And now, no longer part of the organization for reasons still unbeknownst to me, my experience taught me you can’t trust everyone and that friends aren’t friends if they consider you so easily disposable. And lastly, I learned I don’t need a big organization to follow in order to be an advocate and help others. I only need to be me.

So when it comes down to it, the lesson learned is that you can be an amazing advocate as part of a large group or just as yourself. But if you’re part of a group, remember to be true to yourself no matter where the majority may lie. Remember to always be you and to respect other cancer survivors with the understanding of what they’ve already endured, or still are.

Best of luck to all advocates. Make your story matter, if even to one person. You matter.

Keep Moving Forward…

This past week has been difficult emotionally. Sometimes something happens that hurts, but helps you to see the truth in so much. So today I started writing in a journal titled “Carpe Diem”. The writing prompt was “Today I will…” and I wanted to share where it took me:

“Today I will not let others make me feel defeated. I will not let the actions of others who are easily swayed allow me to think that I have done anything wrong by not following the crowd instead of my instincts or my heart.

I will use my cancer story to help others, whether it’s one or one thousand women. I will put pen to paper and bring my words to life. 

I will let the love of my husband, daughter, parents, family and friends give me the extra strength I need to keep pushing forward. I will use that love to follow my dreams to their fullest extent and to stop myself from feeling dismayed or beaten down by those who have no faith in me, because it’s those people who will someday regret pushing me away when they finally see the truth that’s been right there all along.”

Never let anyone or any group make you feel like you are nothing. Always keep moving forward.

Cervical Cancer Awareness Month

CervicalRibbon_TealWhiteRightDid you know that January is Cervical Cancer Awareness Month? In 2014, when I was diagnosed with cervical cancer I thought my world was going to end. I had dealt with abnormal cervical cells in previous years due to HPV (human papilloma virus), but the abnormalities had always cleared on their own and I was otherwise a healthy young woman. But cancer doesn’t always care if you’ve got good cholesterol and are of good weight. It doesn’t care if you live a fairly stress-free life or eat well. Cancer does not discriminate.

It didn’t matter that I never thought my HPV would cause cervical cancer. It happened anyway. I went through treatment with a foggy mind. I was anxious and depressed. All I wanted was my normal life back, a life I so obviously had been taking for granted. I had a radical hysterectomy at the end of August which was followed by 5 rounds of chemotherapy and 28 rounds of external radiation because pathology of my lymph nodes found traces of cancer.

When treatment was complete and I got my NED (no evidence of disease), I was tired but ecstatic. I couldn’t wait to go back to my every day routine of family and work. In the months that followed I learned how many people didn’t understand HPV or cervical cancer. How many people didn’t want to talk about it. And I learned about advocacy and how sharing my story and pertinent information about this disease could maybe help one other woman, or five, or 500, or more.

So I chose to share, which isn’t always easy when your talking about female reproductive organs or a virus that is often transmitted sexually. The stigma behind HPV so often keeps women from chatting about it. But advocating to get the word out has helped me understand the disease and want to keep other women from enduring what I, and so many other women, have had to. Though I had cancer, I know I am lucky. I am NED today and I feel good. But not every woman’s story is the same. Thousands of women deal with daily complications that arose from cancer treatment. Thousands of women die.

What is most important is that women understand the disease and keep up with well woman visits each year. To listen to our bodies, ask questions, and make sure they are getting the care they deserve. Early detection saves lives.

Health Monitor - coverThis month I have the honor of some of my story being shared in the Health Monitor’s Living with Cancer magazine. This magazine is placed in doctor’s offices and hospitals around the world. If just one woman reads the¬†article and makes her well woman visit or takes notice of a current symptom because of my story, that’s enough for me.

You can check out the article here.

Ladies, call your doctor today and make your appointment.

Three Years Ago…

Three years ago I had my first day of chemotherapy and external radiation. The first day of a five and a half week schedule that consisted of five rounds of Cisplatin, a platinum based chemotherapy, and twenty-eight rounds of external radiation to my pelvic area. It wasn’t expected that I’d have to have additional treatment after my radical hysterectomy to treat cervical cancer. But unfortunately, after pathology showed microscopic traces of cancer in two out of nineteen of the lymph nodes they removed from my pelvis, it was important to undergo further treatment to destroy any remaining cells that could be lurking in my body.

I remember people telling me to “be strong” and that I’d “be fine”. But at the time, I didn’t know if I’d be fine. But it’s hard to figure out what to say to someone whose going through cancer treatment. It’s hard to find the words or figure out the actions that will truly help them be strong or be fine. In my case, mentally I wasn’t strong and I wasn’t fine and I knew it.

The first day of treatment I remember crying. I cried because it hadn’t been the original plan. I cried because going through surgery was hard, but going through chemo and radiation somehow gave me a stronger understanding of the fact that I had cancer. The weeks that followed seemed to move slowly. Each day was different and each day I grew weaker, not just due to the treatment, but because I was depressed more than I’d ever been. I wasn’t strong or fine, I was scared and anxious, angry and tired.

I cried almost every single day, especially the days I had chemo. And when I completed treatment five and a half weeks later, I looked like a shell of my former self. From the day I was told I had cancer to the final day of treatment I had lost about twenty pounds from an already thin body. Treatment made me nauseous and gave me daily bouts of diarrhea. There were days I could stomach eating, but there were very few things I actually wanted to eat. On the days I had radiation (Monday through Friday), I’d go for my treatment in the morning, which only took fifteen minutes or so, and then I’d be back at home on the couch or in bed, tired and not wanting to move, constantly feeling anxious about my health and worried I would not get through it.

But I did. In a few weeks, the anniversary of my completion of treatment, I will consider myself three years NED (no evidence of disease). I am not the person I once was, though most people think I’m that same woman. I am not stronger or wiser than I was before being diagnosed with cervical cancer, but I am more grateful and more understanding of my own mortality. I’m grateful I’ve been given more time to watch my daughter grow up, more time to spend with my loved ones, and more time to experience this Earth.

When I completed treatment I promised I’d get stronger and do the things I had kept putting off. But I didn’t do all I promised myself. I didn’t complete the rewrite of my first novel. I didn’t get my body in better shape. I didn’t read 50 books in a year.

First Day of Chemo, October 13, 2014

Today, when the notification came up on Facebook that I had memories to look back on, a photo of my first day of chemo came up. I had a smile on my face, strength in my eyes. I looked at the woman I was and got angry with myself for not doing the things I promised I’d do. I reiterated that list to myself multiple times and remembered that feeling of knowing I’m not promised forever and that we only have now. So today I started working my novel again, and tonight I will continue reading the book I started on my Kindle, and tomorrow I’ll do some crunches and some push-ups. And every morning I’ll try to remind myself of that moment I had this morning when I remembered that life can be short and that I need to stop putting things off just because it’s easier that way. Today is today, and tomorrow is not promised.

A Week of Sadness

It’s been two months since I’ve posted. I’ve been busy between work and home and all the in-betweens. Today I felt the need to take a quick break at work to write my thoughts because I needed to write them and I wanted to share them.

This week the Cervivor community has lost two strong, beautiful women to cervical cancer. Jillian and Lisa were too young to leave this world, both younger than myself. They both struggled through cervical cancer, you know, the one so many commonly refer to as the “easy” cancer. The one that we’re so afraid to talk about because it’s on a cervix, not a breast or a testicle or a lung. And let’s not forget that it’s often caused by HPV, a sexually transmitted virus that makes women think others will consider them promiscuous because of the ridiculous stigma attached to it.

Please do not think I don’t support the discussion and research of the cancers I mentioned above, that is not my intention. All cancers deserve all the support they can get. Instead, my intention is to tell you that discussing cervical cancer is important and it is taking the lives of women young and old. Cervical cancer and HPV don’t give a shit if you’re 23 and single, 30 and married, or 58 and retired with grandchildren on the way. Cervical cancer and HPV don’t discriminate based on your skin color or religion or cultural background. They effect thousands of women every single day and no one wants to talk about it.

In our country we so easily discuss sex. We watch it on television and in movies, we see it on the covers of magazines and books. But we’re afraid to talk about HPV. If our gynecologist tells us we have a strain of high risk HPV, we maybe tell a loved one, a boyfriend or spouse, a confidant, but then we tuck it into our brains, afraid to tell anyone else because, you know, it came from having sex…or oral sex…or anal sex…or some kind of sexual touch. Here’s a little secret I want to let you in on… sex is a natural thing! Most of us have sex at some time in our lives, whether it’s with one person or five people or fifteen people (or more). And since HPV often has no symptoms at all, you don’t know who has it and who does not. Which is why 8 out of 10 women have a high risk strain of HPV at some time in their lives. 8 OUT OF 10!

I urge you, if you’re a woman whose tested positive for HPV, have had pre-cancerous cervical cells, or have had cervical cancer, do not be embarrassed or silent. Do not let society force you into believing that everyone will think you sleep around. Do not let society make you think that there’s something wrong with you. Talk to people, tell someone. I’m not saying announce it to the world; talk to people on your own terms. Tell your family, your girlfriends, and others you are close with. Tell them how common it is, especially the women in your life, and remind them how important it is to keep up with well-woman visits and to get Pap tests and HPV screenings. Our stories can potentially help someone else. By telling just one person who didn’t know anything about HPV or who’d been putting off well-woman visits with a gynecologist, you could guide them to getting a check up that may be life saving.

I’m writing this post quickly this morning, so my apologies if what I’ve written seems scatterbrained. Currently my mind is indeed scattered with sadness and grief for the women I’ve known and seen leave this world because of cervical cancer… the “easy” cancer.

To those who may actually read this post, if you’re a woman, make your well-woman appointment and ask for an HPV test and a Pap test if you haven’t recently had them. If you’re a man, urge your girlfriend or wife or adult daughters to keep up with their exams. But most of all, don’t be afraid to talk about HPV. There’s only a stigma attached to it if we allow one to be.

My heart goes out to the families of Jillian and Lisa, and all those we’ve lost to cervical cancer and other HPV-related cancers. As I write this post tears have come more than once for the loss of these two amazing women I was fortunate enough to know in just a small way, as well as others I have known since being diagnosed with cervical cancer myself in 2014.

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.