Saturday, November 5, 2016

National Race to End Women's Cancer Host Committee Reception

Hey y'al!

Tomorrow is a big day - the 2016 National Race to End Women's Cancer! This year, instead of Team Jennie, my team is Team Mel, in honor of my #cancerbestie Melissa McGroerty Fisher, who sadly last her battle with metastatic cervical cancer last November.

Cancer Besties

 This is my second year on the host committee, and it's such an honor. Team Mel had a goal of $5,000, and as of this moment, we have received $5,075!!!!

The reception tonight was awesome and emotional. Some of my favorite people were there:

My awesome, supportive husband Jeff

Me & Z, LOVE her!!

Tamika Felder, Cervivor founder, speaking as she does so well

Me, Tamika, and Kristy Waltermeyer, my Cervivor sister


Me and the fabulous Camille Grammer, committee host, cancer survivor, and the sweetest lady ever
The big race is tomorrow, so expect a post recapping the fabulous event! Remember to get your regular Pap smears & well woman exams, HPV tests, if you (or your children - girls AND boys) are ages 9 - 26, get the Gardasil vaccine. Early detection saves lives!

LOVE YOUR LADY PARTS!!!!

xoxo Jennie





Monday, September 5, 2016

Adventures in Louisville: My Cervivor School Weekend Recap Part 2

Hey y'all!



When we left off, we were heading for bed after the welcome dinner and some time spent getting to know each other in the bar of our hotel, the Galt House. We were looking at a busy Saturday, with Cervivor School in session beginning at 8:00 am, with speakers talking about various medical aspects of HPV and cervical cancer; a break and time for dinner starting at 3:00 pm; and the Pap Rally and Run from 6:00 pm to 9:00 pm.


We woke up Saturday to rain. Not just a little sprinkle either, and it was expected to go all day and into the night. Unfortunately, the Pap Rally and Run was cancelled. But we still had two full days of Cervivor School to go, so of course we soldiered on.

Ladies I knew before
Ladies I knew before

We met up outside the conference room we would be using for the next two day in the lower level of the Muhammad Ali Center. Some of the ladies I was meeting for the very first time, but I already knew quite a few (through Facebook, if nothing else), a first for me out of the three Cervivor Schools I have attended. Out of the twenty-one women either attending as students or helping out "behind the scenes," I knew 12 in some capacity prior to Cervivor School Louisville.



Saturday was dedicated to medical speakers. First up was Dr. Robert Hilgers, who spoke about the global impact of HPV and cervical cancer, due to the lack of testing and care in developing countries. Next was Dr. Elisia Cohen, who talked about how testing and care for HPV and cervical cancer can happen here in the United States as well as underdeveloped countries abroad. Dr. Cohen focuses on advocating locally in Kentucky, so that there can be some relief for these women's suffering. Next was Dr. Hee Yun Lee, who is developing an app, currently called mScreening, that will facilitate early screening, as there are many women who are not being screened proactively. This is due to barriers such as inadequate knowledge about HPV and cervical cancer, and their symptoms; cultural-based stigma and sense of shame; and language barriers. Dr. Lee and her team are currently looking towards a larger, more diverse testing pool in order to move forward with the app's development. Next to speak was Dr. Karen Kayserd, who spoke about how many lives a cancer diagnosis, in so many ways. Then we had a panel of speakers: Joanna Couch (of Norton Cancer Research Center); Leah Vanderwerp (of Gilda's Club House); and Nicole Wiseman (of Friends for Life). These ladies spoke about the support, services and resources that their various organizations provide. Next was Dr. Laura Bishop Melton, who talked about palliative care. Palliative care is often misunderstood as end of life care, but it really treats the whole patient, with things like symptom control and improving quality of life.

After lunch, Dr. Stan Bloch talked about vaccination 101. The HPV vaccine has been proven to prevent cervical and anal cancers in females, and there is research being done to detrmine its efficacy in vulvar, anal, vaginal, and oral cancers. The HPV vaccine is proven to prevent HPV in anal cancer in males, and they are working to determine if it will prevent oral and penile cancers as well. It is recommended that girls and boys have all 3 shot of Gardasil by age 13; mainly because most children are not sexually active by that age.

There is a lot of controversy around the HPV vaccine. Some common myths are:
  • It causes blood clots
  • It cause auto immune issues
  • It does not cause congenital defects
  • It does not cause fertility issues
  • HPV can cause cancer
 The most common side effects from the HPV vaccine are the same as any other: soreness at injection site; fainting, caused by the vasovagal response.   


About midway through the day, with the rain going on and off, sometimes accompanied by thunder and lightening, Tamika made the decision to call off the Pap Rally and Run. It was definitely a disappointment, but it made the most sense. The silver lining, was I got to spend some time with Wylee, Erica's son. He is th sweetest, cutest kid! Probably because he's got such awesome parents.

After we had wrapped up for the day, Tamika, Erica and Helaine headed across the bridge to New Albany, IN (where the Pap Rally was to have been held) just in case anyone didn't get the message about the cancellation, and showed up. The other ladies made plans and headed out for dinner and adventures, but I stayed behind to wait for Tamika, Erica, Helaine, and Z, Tamika's stepdaughter (and one of the coolest teens I know!), to get back from New Albany. I hadn't been sleeping very well, so I took advantage of the down time to rest, and freshen up - I was a bit wilted from the rain. 

I finally met those crazy ladies between 8:30 and 9:00 pm, and we headed out to track down a good restaurant. Since none of us knew what Louisville had to offer (and it was a monsoon), we decided to go back over the bridge to New Albany, because Erica knew the area. But right before we hit the bridge, we changed our minds AGAIN, and decided to go to the restaurant on the top floor of our hotel, RIVUE, which has sections that spin (à la the Space Needle in Seattle), and view of downtown Louisville to die for. We were very giddy, but at least managed to keep from getting kicked out!

Dinner and drinks were amazing. I had a Kentucky Lemon Drop (Woodford Reserve, lemon juice, demerara simple syrup, ginger syrup, lemon bitters).

Friday, August 26, 2016

Adventures in Louisville: My Cervivor School Weekend Recap Part 1

Good morning, y'all!

As anticipated, Cervivor School Louisville was amazing. We learned lots of medical information, as well as discussions about advocacy, what advocacy means to each of us and how we can advocate effectively. It was a truly incredible weekend that ended way too quickly. So much happened (we carried on an unofficial Cervivor School tradition, and I met a blog reader!) that I have decided to break my recap up into multiple posts. This is part one.


On Friday, August 19, 2016, I boarded a plane in DC headed straight for Louisville. Those who know me, know that I do not travel well. I get panic attacks as soon as I wait for the car service to arrive. But I managed to make it through security, to the gate, and on to the plane without anything more than a little sweat and some shaking. For me, that's a win!

When the plane landed in Louisville, and I turned my phone back on, I had texts from sweet Erica offering to pick me up. We had appointments to get tattoos (a sort of unofficial Cervivor School tradition), so she swung by and got me, and we headed across the river into New Albany, Indiana. We picked up some last minute supplies, stopped for some really good pizza, and made our way to Bananafish Tattoo Parlour.

We were both tattooed by an awesome chick named Alexis. Erica went first, because she had to leave early to go do a walk through of the conference room that Cervivor School would be held in. She got a moon and three stars. I got an elephant in memory of my #cancerbestie Melissa.Here's Erica describing the meaning behind her tattoo:



After my tattoo was done, I hopped in an Uber and managed to make it back to the hotel we were staying at, the Galt House just in time to change and head out to the restaurant for the welcome dinner. The other ladies had been on a scavenger hunt, a team bonding experience, looking for Louisville landmarks, something teal, a cancer survivor, and a medical professional. Dinner was at a restaurant called BirraCibo, and it was so delicious! We also listened to a speaker from Advaxis, Kimberly Dorney, about immunotherapy treatment that Advaxis is designing so that your body's own immune system can fight off cancer. 

After dinner, we headed back to the hotel, and some of us got together in the bar on the third floor, that connects the two towers. We didn't stay too late, as we had an early and long day on Saturday: Cervivor School speakers from 8:00 am until 3:00 pm, and then the Pap Rally and Run from 6:00 pm to 9:00 pm. It was going to be a long day, or so we thought...

xoxo Jennie

Stay tuned for Part 2...

Monday, August 15, 2016

Cervivor School Is Almost Here!

Hey y'all!

I know I keep talking about this, but I am just so excited! This will be my 3rd time going, and every time it's different. I learn more, I meet new and wonderful women, and I get more energized about advocacy. We have the ability to be the last generation of women who suffer from this horrible disease, thanks to the HPV vaccine. It is so important to get your daughters AND you sons vaccinated so we can stop HPV and HPV related cancers; cancers like penile, anal, and head and neck cancers - those affect men! It's not just about the cervix anymore.

Friday I will board a plane for Louisville, KY. We'll have two and a half days of fun and education, laughter and tears. It's emotional for sure. But you come away with a deeper understanding of your disease, and what you can do to help prevent it in others. It could be as simple as talking to people about your experience and the HPV vaccine (hi Merk!), or as involved as lobbying your state government. Everything we do makes a difference in some way.

Saturday, Cervivor is bringing back the Pap Rally and Run! We are raising money to help keep Cervivor doing what it does best, helping women with HPV, cervical cancer, and survivors. You can donate to my team by clicking here. I'm walking not only for Cervivor, but to honor my cancer bestie, Melissa, who lost her life way too soon. There is not a day that goes by that I don't think of her, and I try to honor her life (which she lived to the fullest) in anyway I can. The Pap Rally and Run won't just be about running (or if you're like me, walking) - there will be a DJ, and lots of fun stuff. If you are in the New Albany, IN area, come out! You don't have to register, just come and enjoy the fun. And see me in a tutu :)

Kentucky women with HPV, cervical cancer, and survivors, you can attend this Cervivor School for FREE! If you are interested, you need to register ASAP, and use the code FReE when registering.

The thing I'm most excited about is seeing my Cervivor sisters. Some I have known for years online but never met, and some I see only infrequently. I am excited to meet the women I've never met before! We always have a blast - we are NOT a reserved group by any means!

My awesome friend Erica and I are doing a little something special when I get in on Friday - kind of a Cervivor School tradition. But more on that later.

I'll be spending the week trying to get ready while managing my household, and going to my 50,000,000 doctors appointments. I've been in remission for two years, but cancer leaves you with certain "gifts." But I can't complain too much - I'M A CERVIVOR!

xoxoxo Jennie

Thursday, August 4, 2016

Exciting Upcoming Cervivor Events!

Hey y'all!

So Cervivor is having two super exciting events coming up in the next two weeks! You know that I love, love, LOVE Cervivor! It has changed the way I view myself as a woman with HPV and as a cervical cancer survivor. Instead of being ashamed about having an STI, or being too embarrassed to talk about my lady parts, I now talk about them all the time! And I can't thank Tamika for giving me the courage and knowledge to speak out about my experience and to advocate for the HPV vaccine. One of Cervivor's goals is for this to be the last generation of women to suffer from HPV related cervical cancer. And how do we do this?

Cervivor School!

Cervivor School is open to all women living with HPV, who have cervical cancer, or are cervical cancer survivors. It consists of A LOT of information about HPV, the HPV vaccine, and cervical cancer in order to empower the attendees to go out and advocate and raise awareness about HPV, the vaccine, and the connection to cervical cancer.

I know I mentioned this before, but I am so pleased to tell you that the Cervivor School in Louisville, KY August 19 - 21 is free to women in Kentucky! I really hope this will encourage more of you to attend. It is a life changing event, and we need you!

The other event is Cervivor's Pap Rally and Run on Saturday, August 20. It will be held at the Riverfront Amphitheater 201 E. Water St. New Albany, IN 47150. It's a 5k run/walk, or you can just come and hang out! There will be a DJ to provide music, and you will most likely see me in a tutu :) You can register to run/walk on your own, form a team, or even join my team! No matter what, it's going to be a blast. The Pap Rally and Run is open entirely to the public, so come on out!

For more information, please visit Cervivor's events page for more information.

I hope to see you in Louisville and New Albany soon!

xoxo Jennie

Friday, July 22, 2016

Yes, I'm Still Here``

But life has kind of gotten in the way of blogging. Here are the highlights:

  • I celebrated my 2 year cancerversary on June 16
  • My son completed 7th grade, which means 8th grade, which is almost high school, which means driers licenses, going to college, meting a girl and getting married (because that's where my neurotic brain goes!)
  • Kyle and Reilly at the St. John Carnival
  • We spent 9 days on one of our boats in the British and US Virgin Islands. The boys and Jeff went to a carnival in town, and that night we saw the fireworks there on the 4th of July at Caneel Bay, St. John, USVI
  • I've had several doctor's appointments. Yes, we are still trying to find out what is causing my pelvic pain
  • Reilly spent the last week at zoo camp, and this week he's staying locally at my mom's

The rest of the summer is just as hectic. But two amazingly awesome things are happening in August! First is our first wedding anniversary, and we are taking an fabulous trip. I promise to provide details and pictures once we're back home.

Next, and I'm so excited for this I am literally doing a daily countdown, is Cervivor School Louisville August 19 - 21. For those of you who are unfamiliar with Cervivor and Cervivor School, you can read about it here, here, here, and here. There is still time to register.

In addition to the usual events of Cervivor School, there will also be a Pap Rally and Run.
This is a 5k run/walk to help raise awareness about cervical cancer and HPV. To find out more about this event, click here.

You don't have to attend Cervivor School to take part in the Pap Rally and Run. To register, click here.

My other big event for the summer celebrating my first anniversary with my husband, Jeff. We had no plans to get married. We felt that we didn't need a piece of paper to say we were committed to each other. But my having cancer changed that, and suddenly that public commitment became very important. I've written before about what cancer gave to me, and my marriage to my best friend is the best of all.

I'm pledging to start posting regularly again - and I will definitely have a lot of material to draw from! Thank you to those who keep coming back, even when I'm a bad blogger. I need a place to work through my feelings, and you give that to me.

xoxo Jennie


Thursday, June 2, 2016

A Very Special Event


As some of you may remember, a very dear friend, my #cancerbestie, Melissa McGroerty Fisher, passed away after a long battle with cervical cancer that metastasized from stage 1b2 to stage 4. You can read more about Mel's story here and her passing here.

Anyway, tomorrow, June 3, is the American Cancer Society's Relay for Life in Middletown, DE, where Mel lived. Her family has formed a team, Team Mel, which was her slogan in her fight against cancer. Her sweet husband (he'd murder me if he knew I was ruining his tough guy image) called me last weekend to invite me to come and be a part of the team. OF COURSE I said yes! This was in honor of my cancer bestie! And I love her family, so getting to visit with them was just the icing on the cake.

Since the relay is tomorrow, I need help with donations. I am $105 away from my fundraising goal. Your donations go towards patient services, like one on one peer counseling for newly diagnosed breast cancer patients, or travel to and from treatment centers for patients. And of course there is money going towards research so we can FINALLY find a cure!

So, if you are able to, pleas donate whatever you can. NO amount is too small; EVERY dollar counts! We would also like for Team Mel to be in the to 25 teams, and we are currently ranked 27. Please click here and make a donation!



Caregiver Luminaria 
Loved One Luminaria
If you wish to honor a caregiver, or a loved one who is either battling cancer, or has passed away, you can purchase a luminaria for a dedication ceremony. From the Relay for Life website, "Luminaria bags are transformed and illuminated after dark at every local Relay For Life event. Each luminaria is personalized with a name, photo, message or drawing in memory or honor of a friend or loved one who has been affected by cancer. Luminaria can also be dedicated in support of a Relay participant. Each luminaria candle represents a person. They are our mothers, fathers, sisters, brothers, aunts, uncles, nieces, nephews, friends, coworkers, and so many others." They are $10 each, or you can purchase a silver commemorative keepsake luminaria.

To purchase a luminaria, click here. When you go to the page to choose who your lumianaria supports, select Particpant, and type in my name (Jennifer Elms). This will treat your purchase as a donation to Team Mel.

Thank you so much for helping out with this great cause!

xoxo Jennie 

 

Let's Talk About Sex


Parents, if you’re reading this, you may want to stop now. Not all parents, just my parents. Other parents should definitely read this. It’s hard enough having a healthy sex life once you have kids of any age (I have three teenagers; at this point it’s the fear and embarrassment of them hearing us that puts a damper on things). Throw a gynecologic cancer into the mix, and it’s very easy to watch your sex life pack it’s bags and flee in the middle of the night while you sleep.
Is this making you uncomfortable? Possibly, but after you’ve gone through treatment for GYN cancer, you find yourself opening up to various strangers, maybe asking questions in groups on Facebook for other women who have gone through GYN cancer, just to see if you’re normal. I got news for you – none of us are normal. But there are some things I’ve found to be pretty similar across the board. Please don’t take this in any way as gospel, because I am one woman and cannot really speak for all women.
To paraphrase my friend Tamika, you’ve had coochie cancer, now let’s talk about getting your groove back.
Sex after cervical cancer is not the same as sex before. Between surgery, chemo, and radiation, your body pretty much screams “ENOUGH!” Since I didn’t need chemo or radiation, I’m going to stick with what I know – how surgery impacted my life post hysterectomy.
My oncologist said I would be healed in four to six weeks. In reality, it took three months before I stopped feeling like I had been ripped apart, and put back together by Dr. Frankenstein. I couldn’t easily maneuver from lying down to sitting; I couldn’t go up and down stairs; I couldn’t sleep comfortably. Sex was the last thing on my mind. But my oncologist encouraged me to do it. He said that the more I had sex, the easier it would get. He promised me that I would still be able to have an orgasm. I thought “yeah, right.”
I had some minor complications from surgery: a hematoma and some blocked lymph nodes. In addition to the pain of healing from my hysterectomy, I was also in pain from those surgical artifacts. I knew I had to bite the bullet and just do it, but I was afraid. What if it hurt? What if I didn’t enjoy it? And my biggest fear of all, what if my husband didn’t enjoy it?
In August, three months after my hysterectomy, we went on vacation. We started to fool around when all of a sudden he said “Huh.” That’s not the kind of thing you want to hear in any sexual situation, especially your first time post-op for a cancer that was lurking in your cervix, waiting to kill you.
As an aside, you may think your vaginal vault is really long. It’s not. If you still have one, you can touch your cervix. Put your finger inside your vagina, and you will feel something that feels a little like the tip of your nose. That’s your cervix! When you have your cervix removed during a hysterectomy for cervical cancer, they build what is called a cuff. This is the fake cervix, but basically serves the purpose of not having a hole leading to the insides of your body. I can’t tell you if it feels like the tip of your nose, because even two years later, I am still too afraid to feel inside my own vagina. But that is my hang up, and I honestly hope it won’t be yours. Knowing our bodies by checking them manually is part of how we keep ourselves healthy (don’t forget your monthly breast self exam!).
Ok, back to the point I was trying to make. We’re on a boat in Grenada, trying to have sex for the first time since my hysterectomy, and my husband has just said “Huh.” I pull back and half shriek something along the lines of  “What the hell does ‘Huh’ mean?!?!” And he tells me he feels a bump on the top of my vagina. I immediately begin grilling him for details and make him feel it again so he can better describe it to me. He, naturally, says, “Why don’t you just feel for yourself?” to which I say “No, thank you very much.” Even though it is late, I start an email campaign to my oncologist, certain that with morning will come a directive from him to get on a plane immediately because something must be SERIOUSLY WRONG.
Needless to say, we did not have sex that night.
My oncologist did call me the next day. I wasn’t bleeding, so he wasn’t worried. He saw me when I got home. It turns out that what my husband was feeling was that pesky hematoma I mentioned earlier
We did have sex not long after that. And for the past almost two years, we’ve had it sporadically. The reason for this is because I was too inside my head. This is a very common phenomenon. I touched on it earlier, the fear of pain, of one or both partners not enjoying it, that things would be different.
I was getting ready to head to Cervivor School in Charleston, SC, at the end of January, and I was texting with my friend Erica the night before I was leaving. She mentioned something about distracting her husband with sex, and I commented that that wouldn’t work for me, as I wasn’t having regular sex with my husband. Honestly, sometimes it felt like a chore (if you’re reading this honey, I’m sorry for how that sounds). And then she said something that completely opened my eyes to what had been going on: She said she just had to get outside her own head, and once she relaxed, it was great. I’ve mentioned several times that I was too inside my own head, but it took hearing Erica say she was too for me to really get how much of an issue this was.
Because I had this mental block, of course sex seemed like a chore. It should be something passionate, intimate, and incredibly loving. And I had closed off the part of my mind that would allow me to feel those feelings. If I were to discuss this with my psychiatrist (and next time I just might, to see if he agrees with me; also, if you’re going through or have been through cancer, I highly recommend seeking mental health help, but that’s a post for another day), I bet my subconscious was having a conversation with itself that went something like this:
“You had sex, and at some point contracted a persistent strain of HPV. You had been avoiding going to see the gynecologist, so that HPV turned into cervical cancer. If you hadn’t seen a gynecologist when you did, the cancer could have been further along, and you could have died. Ergo, if you have sex, you are putting your life at risk.”
Ok, maybe my subconscious is a bit of a drama queen.
So I went on to Charleston for a weekend with women who got me, where there were no questions or stories too personal to share. One night, we had a Pajama Jam, and talked about sex. Tamika laid it all out. Lube is your

friend. Foreplay has to last longer than 15 seconds – 15 minutes would be great. Sometimes it just isn’t your night. And there are other things you can do, aside from intercourse, to please each other that are just as intimate.
I thought about it a lot. And the second night I was home, I went for it. We set the mood with candles in soothing, comforting scents. We went slowly. The foreplay lasted FOREVER (in the best way imaginable). And when we actually had intercourse, I easily had an orgasm. The next night we did it again, and I had multiple orgasms, one of which might very well have been the best of my life to date. I was out of my head, and it was wonderful.
I would love to end this by telling you that my husband and I have fantastic sex every single night, but that’s not the case. In addition to my sexual hang-ups from having cervical cancer, I am also a rape survivor, and that comes with it’s own set of baggage in the bedroom. So we’ll go in fits and starts. For a long time, I felt like I couldn’t say no, and I don’t feel that way anymore. Sometimes I’m tired and fall asleep long before the kiddos are in bed and it’s safe to risk making a little noise. The most important thing is that we communicate; otherwise it can lead to the more interested partner feeling unattractive and unwanted.
No matter what stage you are at in your cancer journey, I have several pieces of advice that have been given to me. I talked about them in detail earlier, but just to sum up:
·      Don’t rush yourself. Just because your doctor says you’re healed does not mean you have to have sex right that minute.
·      COMMUNICATE with your partner. Let them know what’s going on in your mind – why you don’t want to have sex, physically can’t have sex, or want to try, but can’t promise that you’ll be able to seal the deal.
·      Go slowly. Foreplay is key. Many women go into early menopause due to hysterectomies, and can experience vaginal dryness. Lube is your friend.
·      Get out of your head. Don’t over think it. Try to get things going, and see what happens.
Sex is a beautiful expression of love between two people. In a perfect world, having a healthy, frequent life with our partners should be as natural as breathing. But nothing is perfect, and cervical cancer means making some changes to your sex life, especially in the beginning. But it does get better. Give it time, don’t give up, and try your hardest to not be afraid.
  xoxo Jennie