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.

Three Years Ago…

Three years ago today I announced to my Facebook world, filled with family and friends, that I had been told I had cervical cancer. I had gone through a difficult appointment with my gynecologist just a few days before and was in the process of scheduling an appointment with an oncologist. I made a quick decision (too quick and I apologize to family who read it on Facebook first) to post the information to Facebook because I am a writer, and words are easier when they’re written instead of spoken face to face.

Three years ago today I started a life altering journey I never expected to go on. It started with a biopsy, moved on to a radical hysterectomy, and concluded with chemotherapy and external radiation. But the conclusion of cancer treatment does not end ones cancer journey, it simply begins it.

Here are a few of the life changes my experience with cancer caused…

  • Anxiety/Fear – Cancer easily can cause a form of post-traumatic stress disorder. When you learn you have cancer, your world is often turned upside down. I was faced with my own mortality. I knew I wouldn’t live forever, but learning I had cancer reminded me that no one knows how long they have on this Earth. Though I am currently healthy and cancer-free, thoughts of recurrence weave into my subconscious and cause anxiety to come out of nowhere. No matter where I am or what I’m doing, I can too easily have an anxiety attack that stops me in my tracks. And to those who think that anxiety is something you can just “get over”, feel free to sit down and talk to me about how anxiety works.
  • New Normal – After going through a hysterectomy at the age of 33, followed by chemo and radiation, my body went through many changes within a four month span. I consider myself lucky that I’ve avoided some of the more severe side effects that treatment can cause, but that doesn’t mean I haven’t had to deal with changes. My “new normal” has included:
    • Having to carry Immodium everywhere I go because I never know when something might irritate my digestive tract (external radiation can cause some damage the intestines).
    • Wearing a hormone patch because, even though my ovaries were left during my hysterectomy, the external radiation fried them and they no longer work. I am 36 years old and in menopause.
    • Rediscovering my sexuality. During a hysterectomy for cervical cancer, not only are your cervix, uterus, and fallopian tubes removed (and sometimes your ovaries), but approximately one inch, or more, of the top of your vagina are removed. That, and some of the effects of radiation as well as early menopause, create changes to you sexually. To put it plainly, this means relearning what works and doesn’t work (and sometimes hurts). It’s not an easy thing to deal with physically or mentally.
    • Losing my ability to have a child. I am so very lucky to have my daughter. I had always considered the thought of having more children, before I learned of my diagnosis. Having the option completely removed surgically from my body leaves a lot of grief to deal with. I’m no longer not having children because the time isn’t right or because money is too tight. I’m not having children because I physically cannot. And for many women, like myself, that can be very difficult to come to terms with. But, at the same time, it reminds me to hug my daughter even tighter every day.
    • Learning to like my new body. This is something I still struggle with. I’ve always been fairly thin, but during treatment I lost quite a bit of weight that I’ve struggled to gain back (without any luck). There are times when I actually hate when people say to me, “You’re so lucky, you’re so skinny.” My response is often, “You don’t want to lose weight the way I did.” It’s not to be mean, but instead to be honest. We live in a society that centers itself too much on size. You may be unhappy with an extra few pounds, but I’ve realized through this that some may be struggling with being underweight too. And then there are the scars. I was lucky to have robotic assisted laparoscopic surgery, but there are still five small scars on my abdomen. Five scars that act as another reminder of my cancer. Five scars that stare at me from my reflection in the mirror as I dress in the morning and get undressed before bed. And though these five scars helped save my life, that does not make them any easier to see.

It’s weird to look back and remember that my cancer journey started three years ago. It doesn’t seem like that long ago. In some ways I’ve become a better, stronger person. I don’t take anyone’s shit anymore. I don’t let little things bother me as much. And I don’t take time with my daughter for granted, even if it’s a half hour of snuggling while watching TV or an hour of talking smack to one another while playing Minecraft. But there are days when I’m also a more fearful me, afraid of a sudden ache or discomfort, anxious at the drop of a hat, terrified of my own mortality. But I’m alive and I’m smiling (most of the time) as the redefined me.

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.

Cervivor School 2017

For five days I had the honor and privilege of attending Cervivor School 2017 in Delray Beach, Florida. This being my second Cervivor School experience, I had an idea of what to expect and was excited to see the women I’d met and befriended in during the Louisville school in August 2016.

Unforgettable Friendship

I didn’t allow my fear of flying keep me away from this amazing opportunity. Upon arriving at Fort Lauderdale Airport, after a few hours delay due to weather, I hooked up with a Cervivor sister I’d only spoken to briefly through Facebook. Shawna and I took a taxi together to the hotel and clicked immediately. So well that I encouraged her to stay for the entire event (she was supposed to leave halfway through), and she listened. And I’m thrilled she did because we’re seriously the best of friends after only a few days.

We spent classroom time learning from an intelligent array of presenters. On Thursday, Dr. Matthew Schlumbrecht and Dr. Sarah Temkin offered their knowledge of HPV and its roll in various types of cancer as well as the HPV vaccine and why it’s so very important for today’s youths. John Heyburn, Executive Director of Clinical Operations at Advaxis, Inc., imparted on us the amazing trials in development and underway with their company in immunotherapy. These therapies boost the immune system to fight cancer cells. Day one ended in an open discussion with Dr. Phil Castle who answered a multitude of questions concerning HPV (human papillomavirus), cervical cancer and their effects across the globe. He also reminded us that, “It’s Not Our Fault!”, something most of us truly needed to hear. In the afternoon we had a chance to learn about Tamika

Cervivor Founder Tamika speaking with Lynn who came all the way from Cape Town, South Africa.

Felder’s trip to Africa, which included meeting with Cervivor Lynn, from Cape Town, South Africa, who, with her family, joined us for this year’s Cervivor School. Hearing her story and about what it is like going for screening and having cancer in Africa was incredibly moving and motivational. The night ended with a pajama party, the talks of which I cannot divulge, but I will say I think I speak for most of the ladies in that it was nice to know that we’re not alone in many struggles after cervical cancer.

Friday was filled with talks on how, as cancer patients and Cervivors, we could better ourselves or deal with struggles we’re facing. Goodbye Brain Fog, presented by Dr. Heather Palmer, better explained the brain fog and memory issues some often deal with after cancer. For me, this was awesome to hear about since, as a writer, I’ve struggled with word recognition since my cancer. I had the pleasure of sitting with her at lunchtime, where she offered a few tips that I definitely plan to use moving forward (even while writing this post). From there, some of our amazing Cervivor Ambassadors offered exercises in healing through writing and art. The writing exercise touched me deeply since although I had written my story down in multiple ways over the last three years, I hadn’t written the emotional end of it. All I can say is that there were a lot of tears when I decided to read it aloud (and not just from me). The art exercise had me nervous at first because I’m far from artistic, but drawing and getting in touch with art was inspiring as well as soothing in many ways. The day ended with an amazing talk from Dr. Ramani Durvasula about maintaining your authentic self through cancer. Her talk included discovering the toxic people in your life and how to handle those situations. During the second day I also had an awesome opportunity to sit on a panel of Cervivor graduates and discuss coping. It was nice to be able to share some of the ways I’ve coped since cancer with our newbies. That night I got to spend some extra time with a few Cervivor sisters at the hot tub and then for dinner.

Saturday started with Cervivor Founder Tamika Felder talking to us about why sharing our story is so important. As Cervivors it’s important to tell our stories because cervical cancer isn’t talked about enough, especially considering it’s estimated that in 2015 about 12,900 new cases of cervical cancer would be diagnosed each year in the United States alone. And so many of these cases are in women who haven’t kept up with their well woman exams. We learned that we could decide on how much of our story we want to tell, and that we can make an impact. Sierra Thetford was up next discussing how she’s used social media to talk about her Cervivor story so that she can help other women hopefully prevent going through what she’d gone through. Cervivor Ambassador Lori spoke with us next, providing us with tips about how we can develop our voices to best make an impact with our own stories. Dr. Debbie Saslow discussed HPV and the importance of preventing cervical cancer and the HPV vaccine, followed by Joan Brady who offered information on how we as Cervivor Advocates can get in touch with our state legislature to make things happen. On Saturday night we hit the water with a dinner cruise on the intercoastal waterway which offered some time to connect more with our Cervivor sisters.

Final day smiles covering up the sadness of leaving our new sisters.

Sunday was our final day, which was so sad for most of us. Our newbies became graduates and we discussed our handbook and what being an advocate is all about. I was sad to have to leave before the graduation so I could make my plane, but I know all of our new graduates will make a terrific impact in their local areas and in the world.

Returning home from Cervivor School, there’s so much to evaluate, mentally and emotionally. In just a few days we’ve learned so much, met so many wonderful people, and shared a lot. I came home with a ton of ideas for how I want to make my story count. I’m proud to be part of Cervivor and what the organization stands for, and I only hope I can make them proud after offering me such an amazing step in my journey.

If you’d like to learn more about Cervivor, visit www.cervivor.org. Learn more about my own journey through cervical cancer here.

Cervivor School 2017 was an amazing experience I will cherish as I become a stronger advocate.

More than Just a Song

Just over a year ago I joined a Sweet Adelines group called Heart of New Jersey Chorus. For those who do not know what Sweet Adelines are, they are “women singers committed to advancing the musical art form of barbershop harmony through education, competition and performance.” This was an opportunity to do something I’d always wanted to, but was afraid to: sing and perform. But after undergoing cancer treatment, I was ready to start pushing my fears aside. Since the moment I auditioned and became a member, the women have been supportive and loving. They didn’t just let me sing with them, they accepted me into their family.

A few weeks ago I had the opportunity to join them on a retreat – an extremely full weekend of choreography, singing and coaching to fine tune our performing abilities. This is especially helpful as we prepare to compete in the Sweet Adelines NY/NJ Region 15 convention in March.

But the weekend ended up being about so much more than music for me. What some of these women probably don’t realize is that about a year ago they saved me in a way. After dealing with cancer and everything that came with it, and after it, I felt like I was letting certain parts of life pass me by. I had a daily routine, a routine which I had come to enjoy, but I was allowing myself to get too comfortable in the safety of it. There were things I’d always wanted to do in life, but was far to shy or scared to actually pursue. When I found the women of Heart of New Jersey Chorus, I found a piece of me I hadn’t realized was lost to begin with.

The weekend retreat became about connecting with one another, to open up and learn about each other as well as ourselves. I came home with a better understanding of not only why I loved to sing, but also of why I needed these women. Together, we cheer for one another on during the good times, comfort one another during the difficult times, and offer strength during the times that we need an extra push. We are women of different age groups from various walks of life who have taken the love of singing and compiled a group that is so much more than that. These women have become my friends and an extension of my family. I can’t thank them enough for allowing me to join with them in harmony.

The Aftereffects…

Being a cancer survivor is a glorious thing. It reminds you how precious life is. It gives you a new understanding on what’s important. There’s nothing easy about having cancer, no matter what your original diagnosis or treatment was. Cancer sticks with you, even when all the treatments have ended. It’s a lingering thought in  your mind, no matter how far back you push it.

The last few days have brought thoughts of cancer too swiftly into my brain. The first was a nightmare I had on Thursday night. It was so vivid, being in my own kitchen on the phone, the doctor telling me my cancer had returned. It’s not the first time I’ve had a nightmare with similar circumstances, every time being suddenly woken in a panic, my heart pounding. Then this morning, while cleaning the house, I stumbled upon some items that we had needed after my hysterectomy. Items I had shoved to the back of a cabinet because I just didn’t want to look at them. In my mind I was brought back to that time (almost two and a half years ago) which was filled with anger, fear and despair.

You see, no matter what I do, cancer will always be with me in some way. I’m thankful daily that my body is rid of the cancer that invaded. But cancer leaves an unwanted gift that I’m not sure will ever go away. It’s fear and anxiety that come up at unexpectedly.

For me, some of these times are when…

  • I see old photos of myself, about 20 pounds heavier. People are constantly saying how lucky I am to be so skinny, that I don’t have to worry about my weight. But let’s face it, we all have self-confidence issues, no matter what our body type. For me, I hate that I’m so skinny, because the reason I’m underweight is due to how much I lost during cancer.
  • I see photos of someone expecting a baby or commercials of newborns. Don’t get me wrong, I’m thrilled when I see friends and family bringing the joy of a child into their lives, but there are certainly times when it hurts. I’d always wanted two or three children. Sure, there’s a definite chance my daughter would be an only child, even if I hadn’t gotten cancer. But having the choice stripped away at the age of 34 sucks.
  • My daughter tells me she wishes she had a brother or sister. She doesn’t understand everything that happened back then; she was only a Kindergartner. But this goes along with the children I had always considered having that will no longer be.

I wish I could say that when you finish cancer treatment and move forward in life that your fears dissipate. But from experience, that simply isn’t true. The memories of treatment stick with you, no matter how happy you are to move forward into a new sense of normalcy. What you used to worry about may no longer concern you as much; but your mind now has a new set of fears and anxieties to deal with instead. But, what we can do as survivors, is surround ourselves with things or people that make us happy to help cushion those difficult fears when they occur.