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

The Semi-Scandalous Truth About Losing Her V Card

Not so long ago, I met Danielle Sepulveres for the first time. It was at a Cervivor event, which we both were a part of, but had never met before. I was so nervous – here was this beautiful, talented woman who had written a book on her own experience with HPV, said vagina a million times, and just seemed way too cool for little old me.

When she walked in on the second day, I probably gave her bitch face, because that’s what I do when I’m nervous. I promise, I’m trying to work on this character flaw.

Saturday night of the event, we both left before the screening of the very powerful documentary, Someone You Love: The HPV Epidemic. Both of us had seen it before, and weren’t too keen on a night of sobbing over the sadness and unfairness of women dying from a disease that is almost 100% preventable.

So we walked out together, kind of talking about what we were doing. I mentioned that my roommate, Erica, had suggested getting a drink after the movie, and Danielle said, “That sounds cool.” So we exchanged digits to get in touch when everyone else came back.

We actually went down early and drank like rock stars: tea for Dani, Diet Pepsi for me. And we talked. I learned more about her book, and knew I wanted to read it. We had a great night. I really enjoyed her company. Yes, she is the ultimate cool girl. But she is warm, and friendly, and inviting.

I just finished reading her book, Losing it: The Semi-Scandalous Story of an Ex-Virgin. The main theme of the book is her experience with HPV she contracted from the first guy she ever slept with. How she went through a colposcopy (a biopsy of the cervix done in a doctors office without anesthesia), cryotherapy (freezing of the abnormal cells on the cervix), and finally a LEEP procedure (a thin, low-voltage electrified wire loop is used to cut out abnormal tissue in the cervix). The information is real and factual and raw. After the LEEP, she made the mistake of turning her head to face the tray that had the excised tissue on it. Uncovered. Needless to say, there was vomit involved.

But these are the things we as women need to know. It’s gotten a lot better, but even today most people hear HPV and have no idea how prevalent it is (it’s estimated that about 80% of the population has it), that there are over 150 strains, 4 strains are the high risk strains, which can cause genital warts or cervical cancer. Those of us who advocate for better knowledge regarding women’s health, for HPV, for Gardasil, for cervical cancer, we don’t want to scare you, but we do want to wake you up. If Danielle hadn’t been as diligent as she was, her story might have ended very differently.

The LEEP finally cleared Danielle of the HPV. It was the emotional backlash that didn’t go away so quickly.

“Matt,” the giver of HPV, failed to show up for Danielle emotionally time and time again. And like a lot of women, she couldn’t stay away – “Maybe this time would be different.” And of course it never was. When she finally cut him off, I literally wanted to cheer.

Losing It also deals with the prospect of dating after such a harrowing ordeal. None of the guys seemed right, and if they did, she flashed back to Matt, and how perfect he’d seemed.

And Losing It is not just about sex and vaginas. It’s about family too. It’s about Danielle’s experience of losing a life long family friend right before Thanksgiving, and the death of her beloved grandmother. It’s about her fabulously wacky mom, who when learning that HPV was an STI, asked Danielle if she was a lesbian now.

When the first HPV vaccine came out, Danielle got it. She stresses a lot in her book that she stays on top of her health, which just goes to show you that you can be as vigilant as possible, and things can still slip through the cracks. Danielle waited 23 years to lose her virginity, and had no idea that in doing so, she was contracting an STI that could have potentially led to a fatal illness. Thanks to receiving the vaccine, Danielle is now protected against the 3 other forms of HPV the vaccine covers (since she’d already been diagnosed with one, the vaccine will not protect her from that).

There is a portion of the book, after Danielle has been given the all clear that the HPV infection is gone, which is like a series of “aha” moments. She describes various conversations with women she knows or meets, and things they say make her think, “Surely these women have been through the same thing I went through.” One woman is pregnant, and assures Danielle that the only difference for her than any other pregnant woman is more doctor’s visits and sonograms. Procedures like the LEEP or multiple biopsies do shorten the cervix, and can cause pregnancies to be deemed high risk in women who have had those treatments mutiple times. Danielle is relieved, because in the back of her mind, she worried that she would not be able to have children. Since her treatment course was very much like this woman’s was, chances are good that she will be fine.

Seriously, buy this book. Buy it for yourself; buy it for your daughter. It is full of medical facts and real life struggles when faced with an STI. It made me laugh, it made me cry, it made me pump my fist and shout “YES!” (My husband probably thinks I’m nuts now.) As a matter of fact, read anything you can get your hands on that Danielle has written. I promise you will not regret it.

Losing It: The Semi-Scandalous Story of an Ex-Virgin by Danielle Sepulveres is available in print as well as an e-reader. She is currently a freelance writer for everything from the Washington Post to xojane.com and a ton in between; working both behind the screen and on camera in TV and film; and speaks as an advocate for improved sex education on college campuses. She has collaborated on a second book, a collection of essays called “Too Old to Have a Major, Too Young to Have a Minor,” and is writing her third book, which will be her first novel. You can find her on Facebook at https://www.facebook.com/danielle.sepulveres, Twitter at https://twitter.com/ellesep?lang=en, Tumblr at http://ellesep.tumblr.com/, and her webpage, http://daniellesepulveres.com/.

Joey Feek Has Gained Her Wings

Joey Feek, of the country music duet Joey+Rory, has passed away today at the age of 40, bringing an end to her battle with cervical cancer.

Joey was first diagnosed in 2014, after the birth of her daughter, Indiana. She went through treatment, and was in remission, only to have the cancer return in her colon. She has spent the last few months in hospice care at home, surrounded by her loving family.

Joey's husband, Rory, has chronicled the couple's journey on his blog, http://thislifeilive.com/, speaking candidly about the love and sorrow that have coexisted in their lives as they have faced Joey's impending passing.

True to form, Rory announced Joey's death on his blog in the utmost loving way, honoring her as he always did:

"My wife's greatest dream came true today.  She is in Heaven... The cancer is gone, the pain has ceased and all her tears are dry.  Joey is in the arms of her beloved brother Justin and using her pretty voice to sing for her savior. At 2:30 this afternoon, as we were gathered around her, holding hands and praying.. my precious bride breathed her last.  And a moment later took her first breath on the other side. As I held her hand and kissed her goodbye one last time… I was reminded of another dream of hers that came true. "

Joey has become a face of cervical cancer to many. Regardless of one's musical tastes, this beautiful family has touched the hearts of millions, who followed their journey on Rory's blog and in the media. As much as we all prayed for a miracle, it was not meant to be.

I urge you all to do what I imagine Joey would want: make your health a priority. Have a Pap smear. Have a well woman exam. Get the Gardasil vaccine. Do it all #InJoeysHonor.

Joey, Rory, and their daughters

xoxo Jennie

Life After Cancer

Life after cancer is a weird thing. Since there is currently no cure for cancer, I'm only in remission. If I manage to stay in remission for 5 years, no recurrences, I'll be considered cancer free. Since I'm not there yet, I'm not actually living life after cancer completely, but I am living life without the disease being active or evident in my body.

I still live with worry: worry that it will come back; worry that my friends will have recurrences; worry that more of my friends will die. But I don't actively live in fear of those things, or I would drive myself crazy.

Despite what you may think, there are some positive things that have come from me having cancer.

I live more fully in the moment
I try to avoid anger
I'm doing advocacy work for cervical cancer, HPV, and Gardasil, the HPV vaccine
Since I was given a reprieve from this horrible disease, I feel an overwhelming urge to help other women navigate through this disease.

Not long ago, I participated in a Vision Board party. A vision board, who those that don't know, is when you take a large piece paper (poster beard works best), find key phrases from magazines, and get to work! The goal of having a vision board is the it helps you focus you goals for the coming year. And of course, mine was all about advocacy!

My goals for this year are to reach out to as many women as possible about HPV and cervical cancer. I want to help women who are also going through the sames things I went through, as well as to prevent as many as possible from having cervical cancer. Cervical cancer is almost 100% preventable. That's huge, not just as a number, but in the fact that that isn't something that can be said about any other cancer.

A few weeks ago, a women got in touch with me via Facebook because her daughter had recently diagnosed with HPV, and she couldn't get a hold of Tamika, the founder of Cervivor, and which I am an Ambassador of. I was able to answer to answer the mother's questions, allay her fears. I also told her that her daughter should have a complete Pap smear done, in addition to the pelvic exam that had initially been done.

Just today, I got a voicemail from a friend. She had reached out to me months ago because she was overdue for a mammogram, and  was afraid to go, as breast cancer runs in her family. Breast cancer is not my area of expertise, but some things, like fear, are universal. I talked (and talked and talked and talked) her through it, and when she went, she called me so proud of herself for having gone. The call from her today was to say that she see women reaching out to me for advice on HPV, cancer, and women's health, and how proud she was of me. That made me feel great, not because she was praising me, but because I'm doing what I feel like I was meant to do. I feel like I have a purpose.

It makes me so happy to have conversations like that, or to hear from my friends posting on my Facebook wall that they've had their Pap smears. Kudos ladies, kudos.

Thank you for reading along on this blog. When I started it, it was part of my therapy. I needed an outlet for what I was feeling, because in a lot of ways I still felt all alone. I hope that you've enjoy what you read, learn a thing or two, and not feel like you are the only one going through HPV or cervical cancer. I hope you'll keep coming back. If you have questions, you can always private message me on the My Life After Cervical Cancer Facebook page, or on my personal Facebook page, Jennie Elms. I'm also on Instagram (@jenelms) and Twitter (@jennie_elms). I will always do my best to answer your questions, and if I can't answer them, I have a lot of resources that I can go to to find the answers you need. I'm constantly amazed that my little side project has reached so many, and I hope to continue to reach as many as possible.

xoxo Jennie

What Cervical Cancer Has Given to Me

When you think of cancer, what usually comes to mind is being bedridden, wasting away, tremendous pain, and death. I suffered through my cancer diagnosis and treatment. I was bedridden, and in extreme pain. I was terrified, depressed, and anxious.

Surprisingly enough, cancer has given me gifts as well.

• ·      My long-term boyfriend asked me to marry him, partly because of his fear of losing me, and we had a beautiful wedding on a secluded beach in St. Thomas August 7, 2015.
• ·      I have a wonderful family whom I love dearly.
• ·      My son and I are able to talk about sex and STIs without the embarrassment that was there before.
• ·      I have an even closer bond with my mother because we went through cancer together.
• ·      I reconciled with my father after three and a half years of no contact.
• ·      I try not to sweat the small stuff (full disclosure, I am still working on this).
• ·      I look at every day as a gift.
• ·      I have met wonderful friends who have gone through cervical cancer, and really get it.
• ·      I have discovered that I have a passion for advocating for HPV and cervical cancer.
• ·      I love more and deeper than I ever did before.

Would I rather not have had cancer to receive these gifts? Absolutely. But I did have cancer, and I was given these gifts, and I am so grateful for them. So cancer, you still really suck, but I do appreciate the good that you brought into my life.

xoxo Jennie

Having Cancer Makes Me Different

I had cancer. That makes me different from you (unless, obviously, you’ve had cancer too). Having cancer makes me different from me too, the me I used to be before a phone call in April of 2014. Three little words – “You have cancer.” – and everything totally changed.

Having cancer alters you, regardless of your age or what form the disease takes. Aside from the “typical” changes one might expect, there are changes specifically linked to cervical cancer.

Let’s talk about the somewhat universal changes cancer brings.  You are sick, and you feel sick. The treatments are often more painful than the disease itself. When I had my cone biopsy to find out how far into my cervix the cancer was, I spent the entire night after awake and in excruciating pain. I waited until 6 am (it was a Saturday) to page my oncologist, who told me to come in to the ER. There was nothing apparently wrong; “It just seems,” he told me, “that you have a sensitive cervix.”

Cancer is oftentimes an unseen illness. When most people think cancer, they picture emaciated people with sallow skin and no hair. That is one face of cancer, but it’s not the only one. I never looked sick. I just felt it every day of my illness. And I felt it much more painfully when people would say things like “Oh my god, you have cancer? You look so good!” To say that is to discredit my illness and the illnesses of all the others who don’t fit into your preconceived mold of what a cancer patient should look like.

Cancer brings a huge degree of uncertainty. No matter what stage you are at, how “good” of a type of cancer you have, none of that really matters. Cancer is still a potentially fatal disease. So I spent a lot of time thinking about my own mortality. I was very early stage, at 1b1, there was no lymph node involvement, and I had a 95%+ rate of beating this beast. But I was still scared, because 95 isn’t 100. Because I have cancer, and my friend does not.

As uncertain I was of the future, my priorities seemed to shift overnight. I suffer from a form of mental illness, and had attempted suicide in January, just three months shy of my diagnosis. That diagnosis made me want to live, for a very long time. I didn’t know what the future held for me in terms of my living beyond cancer, but I would be damned if I was going to keep acting like a brat and taking my life for granted. This is in no way intended to shame or disparage people with mental illness or who are suicidal; this was just my way of looking at my situation.

I so often feel misunderstood, different, like an outsider. I am about to turn 36; I am too young for this shit. But I know that there are women fifteen years younger than I am who are dying from cervical cancer, and I know I’m not so alone.

With cervical cancer, the biggest (and least talked about, unless you know Tamika Felder-Campbell) change is sex. My oncologist told me I could have sex after six weeks. I think my jaw hit the floor. I had already spent the last four months having my vagina actively poked and prodded, and I was looking at that continuing on for at least another few years. Sex was on par with bamboo shoots under my fingernails at that point. You couldn’t have paid me enough money to voluntarily put anything anywhere near there. 

However, this was really unfair to my husband (boyfriend at the time). So in August, two months after my surgery, we attempted to do the deed. He put his finger in my vagina, and kind of went, “Huh.” That’s never a noise you want to hear during sex, ESPECIALLY two months after you’ve had a radical hysterectomy to remove cervical cancer. I pretty much lost my shit, demanding to know what brought that lovely little “Huh” on. He told me he felt a bump. Well, describe it, I demanded. Why don’t you just feel it yourself, he asked. Because there was no way in hell I was putting my finger in my vagina, not that night, and possibly ever again.

When my oncologist finally examined me, he said it was just a hematoma, which a CT scan backed up; just a simple surgical artifact. No big deal, my oncologist said. Have some sex, he told me. HAHAHAHAHAHAHAHAHA I said.

I wasn’t ready for sex then. I thought I would never enjoy it ever again. It was one more thing I had lost, like my fertility, unwanted thought it was. But of course this changed too.

My sexual hang up was a mental block. I was terrified that my husband would not enjoy sex with me the way he used to. My vagina was different; they removed a section of it during surgery. The most helpful thing to do was to talk it out. And to listen to and believe him. If he says he finds me beautiful and sexy, why should I doubt that?

It’s not always easy, but he respects my pace. And I can’t think of anything sexier than a husband wanting to make his wife have an orgasm (or more!). When I can just focus on him, and what he is doing for me, our sex life is explosive.

So yes, I’m different now. I worry about the future, and how much of it I’ll have. I’m not like the other moms in my son’s class (but my tattoos made me an outcast in that department long before I had the “STD cancer). I talk about cervical cancer, HPV, how you can prevent those, what you should do about vaccinating your child.

Cancer changed me. It took out some of the worst parts of me, and allowed the best parts to shine.

xoxoxo Jennie