Educating the Next Generation About Sexual Health

Left: Maritza Lugo Right: Danielle Sepulveveres

Danielle Sepulveres and Maritza Lugo are incredibly talented women. Danielle is a writer, and Maritza is an illustrator. Together they teamed up on a project that would illustrate how important the HPV vaccine is, and how it is perfectly harmless. Now here's a little background on how first Disney Princesses, and then superheroes are protecting themselves against HPV and other STIs, as well as expressing the importance of well woman visits.

My Life After Cervical Cancer: The Disney Princesses go to the Gynecologist piece was your first. Where did the idea come from?

Daniele Sepulveres: I had seen re imagined Disney Princesses shared on my Facebook page pretty much on a daily basis. Jokingly I asked Twitter one day if there were any princesses getting the HPV vaccine and it occurred to me what a great idea it was to actually do that.

Mulan Goes to a Well Woman Exam

MLACC: How did you divide the workload?

DS: I came up with the concept but I have no artistic skills whatsoever. As a big fan of Maritza's artwork I asked her if she'd be interested in drawing the princesses. From the moment she agreed I literally trusted her with everything. We discussed which princesses to use and Maritza made magic happen.

ML: Danielle had written me because her original illustrator's schedule was really busy. I read her email and said YES right away. I couldn't possibly imagine not doing the illustrators. Once she gave me the descriptions, I immediately got to work on the drawings.

MLACC: Why Disney princesses?

DS: Because they are familiar but had not ever been used in this kind of a message. It was a way to combine something that's recognizable with important information that is often left out of the mainstream media news cycle. Women's health is important. All aspects of it. We wanted to bring all of it to the forefront, but mostly the parts no one discusses-"below the belt" issues. 

ML: There's basically every rendition of Disney Princesses out there doing whatever, wearing whatever. Why not utilize their popularity for something bigger and greater? Every one loves them. Everyone has a favorite. It was a no brainer, really.

MLACC: What kind of feedback did you get, both positive and negative?

DS: Mostly positive! People loved our creativity and our message and it spawned a lot of media coverage about HPV, cervical cancer prevention and the non-profit Cervivor which works tirelessly under Tamika Felder's leadership to get this info to the public. Some negative reactions involved parents not wanting this to prompt discussions with their kids about health education and I expected that but it wasn't going to stop me.

ML: The response was definitely positive. Once it started going viral and many news outlets/magazines were writing about us, the trolls started to emerge but thankfully nothing too bad. Even with the worst ones, Danielle and I laughed it off. One angry Twitter user suggested that I was a part of the Illuminati so no real complaints there.

MLACC: How did you feel when it went viral

DS: I still get excited when I think about it. It was overwhelmingly joyful.

ML: it's the most insane and overwhelming feeling in the world. It's like if the entire world knew it was your birthday.

 MLACC: What media outlets have these pieces been seen in?

Superman Gets the HPV Vaccin

HuffPo, Seventeen, iD, Fox, CBS LA news, Dr. Oz, Glamour (internationally!), and so many others but it was really Forbes and their excellent reporter Tara Haelle - who has a new book out this week - who kicked it all off for us.

 MLACC: Why did you choose superheroes as the next installment?

DS: Because we don't want to leave out the boys! And we feel superheroes is the way to reach them more than princesses. Although each campaign is interchangeable to whom it's targeting regardless of gender or sex. I asked Maritza if she thought Disney princesses or superheroes were the way to go and she immediately said superheroes. I know she was absolutely right.

ML: Any real criticism was "what about the guys?" So to follow up with a series predominately geared towards men was just simply the next step.

MLACC: What's next for you two?

DS: We have some ideas that we're keeping quiet for now, but expect to see more projects from us in the upcoming months.

Stirrup Stories: A Very Exciting Upcoming Event!

As many of you know, I am affiliated with a group called Cervivor. Cervivor is a nonprofit that provides support for women dealing with cervical cancer all across the spectrum, from women with HPV all the way to women dealing with Stage 4. Cervivor also runs schools across the country to teach women how to advocate for change, from education to promoting vaccination. I have posted before about how Cervivor changed my life, as well as my outlook on my own diagnosis by inspiring me to be the change I want to see.

On May 12, 2016, Cervivor is doing something that they've never done before. They are putting on an event call Stirrup Stories: Narratives Beyond the Speculum. This event will allow real women who have dealt with all aspects of cervical cancer to get up and tell their stories - raw, real, honest, and uncut. This is truly a fantastic event, as it will make our voices heard. It will give people the chance to see that there are real women behind this disease - mothers, grandmothers, and women who were unable to bear children because of this horrible illness.

Stirrup Stories will be held on May 12 from 6:00 pm to 10:00 pm at the Howard Theater in Washington DC, and include a performance by Keke Wyatt in addition to the stories told. All proceeds will provide HPV and cervical cancer education and support for cervical cancer survivors around the world. This is an amazing event that will bring together women who may have been suffering in silence, as well as to further the cause to eradicate cervical cancer for future generations. With the information that is available, and the HPV vaccine, we can see cervical cancer eradicated in our lifetime.

If you are in the DC metro area, or close enough to attend, I strongly suggest that you go. This is going to be an epic event that you don't want to miss.

Tickets will go on soon, but keep an eye out on cervivor.org/events for more information.

Cervivor School Charleston Recap - Arrival Day

Back in September, I went to San Diego to Cervivor School. It was an incredible experience, but afterwards I realized that I did not get as much out of it as I could have. Yes, I attended the mixer (and even made a new friend, hi Melissa!), and all the sessions, the group dinner, and the graduation ceremony where the attendees become Cervivor Ambassadors. But I kept pretty much to myself. I didn’t embrace the social aspect, the sisterhood, which comes with the experience.

The reason for this was exactly what my last post was about: anxiety.

As I talked about, I suffered from anxiety before I was diagnosed with cancer. My anxiety falls mainly into two categories, general anxiety and social anxiety. The social anxiety held me back in San Diego.

Even though I missed out on forming bonds in person with the other women there, we all connected on social media, mostly through a private Facebook group for women who have attended Cervivor School, and then shifting to becoming Facebook friends outside of that group. That was where I really started to get a taste of the Cervivor sisterhood.

The main thing that Cervivor School did for me was give me some direction of what my life post-cancer was going to be like. Cervivor School taught me about advocacy, and how I could be an advocate. I was already doing some advocacy. I had started this blog, and I got involved with the Foundation for Women’s Cancer by participating in The National Race to End Women’s Cancer (see here and here). I left San Diego wanting to do MORE. I wanted to help educate women. I wanted to talk about prevention, so that no more women would have to be diagnosed with cervical cancer. I wanted to take action.

Since I now had the inside track as a Cervivor Ambassador, I found out early about when and where the next Cervivor School would be: Charleston, SC from January 28 to the 31^st, 2016. I signed up immediately. Two of my Cervivor sisters and dear friends, Erica and Marie, would be there as well. I was so excited to spend time with these two women, to meet some other Cervivor sisters that I knew online but had never met in person, and to meet the women who would be attending for the first time.

One of the areas where my anxiety manifests itself the most is if I have to travel by plane alone. So I was up early the Thursday morning I left for Charleston, pounding coffee like crazy. When I got to the first TSA checkpoint and had to hold up my driver’s license, my hand was shaking so bad from the brilliant combination of nerves and caffeine that I was sure the TSA agent was going to escort me into a small room for a friendly interrogation. Fortunately I made it through, to the gate, and on to the plane without incident.

I checked into the hotel with about three hours to spare before the getting acquainted mixer. I went to my room to unpack and decompress. Erica was going to be rooming with me, but she wasn’t arriving until the following morning, so I spent some time laying down and reading. Before I knew it, six o’clock had arrived, and it was time to head downstairs to meet everyone for the first time.

I walked into the room, and saw two people I knew – Iman, who works for Cervivor, and Brianna, who does almost all the video and still photography. I said hi to them, and headed to the bar. And I sat down by a woman I had never met (hi Vanessa!) and introduced myself.

The whole night was like that. I was able to overcome my social anxiety enough to talk to women one on one, and to speak when we sat down in a group for a while so Tamika could do the official welcome and overview of the weekend. I kind of felt like I couldn’t shut up… And it was great!

I went to bed that night knowing that my experience this time at Cervivor School would be different because I was going to make it different. I wanted to experience the sisterhood right away, not in the weeks and months that followed as I finally worked up the courage to get to know my Cervivor sisters on a deeper level.

Stay tuned for more…

 xoxo Jennie

I Beat Cancer, Only to Feel Like I'm Drowning in Anxiety

It’s dark and cold down here. I can hear screeching in the distance. My heart is pounding, my hands are clammy, and sweat is pouring down my back and from my armpits. I’m crying and shaking, and I feel like my motor skills are dull. I can't catch my breath; it's like there's a vice around my chest.

I’m in the parking garage of my oncologist’s office for my regular checkup, having been cancer free for close to two years, and I'm having a panic attack.

I’ve blogged in the past about depression after treatment is over, and that post touched on anxiety, as depression and anxiety tend to be soul mates. I’ve been open about my own struggles with anxiety, both before and after cancer, and a friend offered up my services the other day to a woman dealing with post-treatment anxiety.

So what is anxiety? WebMD.com breaks anxiety down into four classifications:

Panic Disorder – This is a panic attack. Feelings like alarm bells clang and clang with no prior notice. These are described as similar to heart attacks – chest pains, shortness of breath, sweating, and a high heart rate.

Social Anxiety Disorder – Like the name implies, this form of anxiety centers on fear of social situations, usually with worries of being judged, or acting in a way that would embarrass you.

Specific Phobias – Think things like fear of flying, but taken to an extreme level. This can lead to avoidance of many everyday things.

Generalized Anxiety Disorder – WebMD defines this as “excessive, unrealistic worry and tension, even if there's little or nothing to provoke the anxiety.”

These classifications are great in determining what makes you anxious, but they can and do occur concurrently. I, for example, fall into all four of those categories.

If I had to pick a topic for a cancer survivor, I’d say they have a specific phobia: obviously that the cancer will come back. And since this is always an actual possibility (just higher or lower depending on your personal situation), I’m not really a fan of WebMD’s definition.

Anxiety is common for people with cancer. While most patients are able to overcome these initial feelings, some are not. The National Comprehensive Cancer Network (NCCN) defines ongoing emotional anxiety symptoms as the following:

• excessive fear or worry
• feelings of dread
• having trouble concentrating
• feeling tense and jumpy
• anticipating the worst
• feeling irritable
• feeling restless
• watching out for signs of danger
• feeling like your mind's gone blank

The NCCN also defines physical symptoms of anxiety:

• pounding heart
• sweating
• dizziness
• shortness of breath
• muscle tension
• headaches
• fatigue
• insomnia

So what do you do if you have anxiety that will not go away? Start off by speaking to  your oncologist – they are familiar with all physical and mental aspects of cancer, and it’s aftermath. They can refer you to a psychologist and/or psychiatrist. You can do talk therapy, medication, or a combination of the two. I personally found it to be most helpful to me to see a therapist to deal with my feelings, and a psychiatrist to help manage my mood with medication.

Finally, please know that there is nothing to be ashamed of. The National Alliance on Mental Health (NAMI) says that 1 in 4 adults experience mental illness each year. Couple that with the fact that the American Society of Clinical Oncology (ASCO) says that 1 in 3 cancer patients suffer from anxiety or other mental illnesses, and know that you are truly not alone.

If you are suffering, please get help, the same way you got treatment for cancer, or would go to the doctor for the flu. The US Department of Health and Human Services can provide direction on how to handle mental health issues.

And always remember, you are not alone.

xoxoxo Jennie

The Cervical Cancer Sorority: But I Didn't Even Rush!

Yesterday I heard a story from a fellow cervical cancer warrior about a conversation she had been in about HPV and cervical cancer. The conversation was centered on women who were saying that their cervical cancer was not HPV related.

I’ve been in these conversations myself, and I hate them. I find them to be horrible, because we should be supporting each other, no matter where our cancer came from. I also think it’s slut-shaming – since HPV is considered an STI, to “brag” about getting cervical cancer another way is, to me, the same as saying “I’m better than you.”

Well guess what ladies? We’re all better than our cancer.

The CDC estimates that HPV causes 90% of cervical cancers. I’ve heard that number be estimated as high as 99%. So even if the number is 90%, I’ve heard a lot more than 10% of the women I know with cervical cancer claiming to not have had HPV EVER. And considering friends and groups I belong to, the number of women I know with cervical cancer is in the thousands. The numbers just don’t add up. According to the CDC, around 79 million people in this country have HPV, and about 14 million people become infected each year. Livescience.com suggests “more than two-thirds of healthy Americans have a human papillomavirus (HPV) infection on some part of their body.”

Now there are two forms of cervical cancer that currently show no link to HPV: small and large cell cervical cancer (SCCC and LCCC respectively). These generally show no warning signs, but sometimes show the same symptoms as HPV-related cervical cancer: vaginal bleeding, vaginal discharge, and bleeding after intercourse.

Out of approximately 11,000 new cases of cervical cancer diagnosed each year, around 100 cases will be either SCCC and/or LCCC. At less than 0.01%, there is just not information known about these two forms of cervical cancer to determine the cause.

So I’ve given you a lot of facts about what causes cervical cancer, percentages involving HPV and SCCC and LCCC, and that’s great. But that is not the point of this post.

I’ll say it again. THAT IS NOT THE POINT OF THIS POST.

I want to circle back to what I said before: We’re all better than our cancer.

My case of cervical cancer was caused by HPV, an STI. I’m not ashamed of that. Chances are more than likely yours was caused by HPV too, and you shouldn’t be ashamed either. But I understand if you are, I really do. I was too, in the beginning. It took a lot for me to put myself out there and say, “I have an STI and it led to cervical cancer.” The reason I was able to let go of my shame and put myself out there was because I had a ton of women supporting me, telling me it’s not my fault, and that there is no shame. And I want to tell that to you. I want you to believe me. I know it’s hard, but it’s the truth. You have nothing to be ashamed of.

As women, we have so many things that we apologize for. I’m sorry for not being a better mom, wife, employee. I’m sorry I’m not thinner, or sexier, or fashionable. I’m sorry I’ve slept with X number of men, because we all know that when a woman has a number higher than 3, she’s a slut. But if a man has a number higher than10, he’s a stud.

I read a great article by Danielle Sepulveres recently about how we as women should lift each other up,The Thirst Is Real. We shouldn’t resist complimenting each other, or empowering each other, and we should definitely not criticize each other for having HPV-caused cervical cancer or not. When you have cancer, you need all the help you can get. As a friend likes to say, we each have two shoulders; that’s a lot of shoulders to lean on.

We are women with a disease that carries a stigma: only sluts get this type of cancer. That is simply not true. We are daughters, mothers, grandmothers, friends. We are gay and we are straight. We are virgins and we’ve not been (and it’s not your business how many partners I’ve had). We are rich and poor; we come from all races, religions, and backgrounds. We are a sisterhood we never wanted to join. Our colors are teal and white.

Please ladies, let’s not lose sight of the fact that we are all battling the same dragon: cervical cancer. It does not matter how we got it; we did not choose it. Let’s support each other in our fight to end it rather than grouping ourselves into HPV versus non-HPV. The end result didn’t matter – we are all sick, and we all need support. And the best support we can get is from one another, as no one knows the agony of cervical cancer in all its awful glory better than we do.

xoxo Jennie

Happy Birthday to Me

All Dressed Up

Today I am 36 years old. I am on the backside of 30, definitely no longer young and hip. I have a husband, 3 sons, 2 dogs, and a real grown up house. Sometimes I can’t begin to imagine how I got here. I feel like Alice, as if I fell down the rabbit hole, and woke up in a land of dirty dishes, and smelly teenagers, and watching HGTV every night.

But I’m happy.

Last year I didn’t want to celebrate my birthday. 35 was soooooo old. I was mourning my 20’s, or even my early 30’s, but 35? Well, just buy me some support hose and orthopedic shoes as presents, because I obviously need them.

Last year, Jeff twisted my arm into going out to dinner. I barely got dressed. I think I wore Uggs. I wore no makeup (even though I wear no makeup in my daily life, I do when I’m going out). Honestly, I don’t remember if we had cake.

This year is different. My priorities have changed. You’d think that having beaten cancer, my priorities would have been a little bit more on track last year, but what can I say, I can be really superficial.

Princess Complex

This year I am grateful to be turning 36, because I know women who won’t make it to their next birthday. When I lost my cancer bestie in November, it felt like the world had stopped. But I know that she’s looking down on me, full drill sergeant voice, telling me if I don’t celebrate like a damn princess she will haunt my ass for eternity. And we all know it’s better to not piss her off.

All My Boys

So I’m celebrating for my friends. I’m celebrating for my family, who I’m sure sometimes still worry about losing me. I’m celebrating for my husband, who I know still worries, even though he puts on a brave face every day and tells me that I am just fine and am going to stay that way. I’m celebrating for my boys – I have so many years left to embarrass them! But most of all I am celebrating for myself, because I made it through what could have been a death sentence, and I feel like I have a second chance at life.

I have a ton of grey hair. I have crow’s feet. My body is lumpy and middle-aged. But I am here. I am the birthday girl. And I am still standing.

xoxoxoxo jennie

Q & A With Danielle Sepulveres

Danielle Sepulveres

Today My Life After Cervical Cancer (MLACC) is chatting with Danielle Sepulveres (DS), advocate, author, and all around bad-ass chick.

MLACC:        What made you want to write Losing It: The Semi-Scandalous Story of An Ex-Virgin?

DS:                It wasn’t even so much that I wanted to write it, I felt I had to. I was so lost at that time in my life. I didn’t understand or know how to adequately cope with all the emotions I was feeling or feel comfortable really turning to someone to talk to about it. I think I believed that if I could put everything that was hurting me down on these pages then maybe someone would read it and say “hey you’re not the only one.” Writing the book was my therapy.

MLACC:        Have you received a lot of feedback from young women with similar stories?

DS:               I have! So much encouraging feedback from women who have questions, who have similar stories, who are just looking to connect with someone who they feel understands what they experienced.

MLCC::         In Losing It, you work at a job you hate. What made you jump into writing full time?

DS:               Well, I was laid off from a job at a company that didn’t value its employees or care about protecting women from harassment, so the loss of money and insurance aside, it was a huge blessing. I was basically forced to sink or swim and freelance life was what I turned to out of necessity but writing has been an inherent part of my life since I was old enough to pick up a pencil.

MLACC:        As an awesome writer, you have a great advocacy for women’s health. How much of your writing is devoted to that?

DS:                I would say at least half. I have long struggled with trying to break into mainstream media with some meaningful coverage for the health issues I experienced and this year is truly the first time that has happened and it’s due to women (and men) everywhere not giving up on trying to be heard on all aspects of women’s healthcare.

MLACC:        Tell us about the Disney Princesses Go To The Gynecologist and how it went viral.

DS:                Oh my God, this was probably one of the most exciting things that’s ever happened from an idea I had. For months I had entertained the idea but without any artistic talent was worried about how I bring it to fruition. Enter Maritza Lugo, talented illustrator who cares about women’s healthcare as much as I do and we really made the perfect team. She’s brilliant and thought of details that hadn’t occurred to me and it was one of the best collaborations I’ve ever been a part of. We posted it hoping it would get some notice on Tumblr and some shares, we were not expecting nearly every news outlet to jump on it. Or for it to go international. We are still buzzing.

MLACC:        Are you currently in a relationship? If so, how concerned are you about HPV or other STIs?

DS:                I actually tend to keep my private life private even though most people think I’m constantly writing about my love life. I write about things that have happened in the past. But I have never dated anyone since “Matt Ryan” who I haven’t had a discussion about STIs with and it’s been really great educating guys who really had no idea exactly what it is or how this affects people. I’m not concerned and part of that is because I make a point to always go for my well woman visit.

MLACC:         Did you receive any sort of backlash or reaction from “Matt” after Losing It came out?

DS:                I've never heard any response from him at all, we shared no mutual friends and social media wasn't at this level when we dated. Too bad because I might have found out much quicker about all his infidelities! 

MLACC:        What is your number one message to women AND men regarding HPV and cervical cancer prevention?

DS:               Make your annual appointments and don’t be embarrassed! Find a doctor you like and trust, ask questions. Be educated and informed. Don’t overlook your health.  For the men who don’t understand what this is all about, ask questions and LISTEN. Be supportive. You’re part of this aim to eradicate a cancer.

Thank you to Danielle for answering our questions here today! If you have further questions, leave them in the comments section of the blog. And don’t forget to purchase a copy of Losing It: The Semi-Scandalous Story of An Ex-Virgin!

 xoxoxo Jennie