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Cervivor in New Albany & Louisville!

7/31/2016

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I am super excited to announce that there is going to be an amazing event in New Albany open to the public!  Cervivor is hosting a Pap Rally and 5k at the New Albany River Amphitheater on August 20th at 6:00.  It is going to be an amazing time and I really hope to see a good turn out.

The event will take place over the course of a few hours with music, empowerment, and of course the 5k.

Cervivor has been such an amazing organization for me.  I first experience with Cervivor was in September 2015 when I was able to attend a Cervivor School in San Diego.  I have been super vested ever since.  Cervivor helped me to organize myself and continues to give me the support to be an impactful active advocate.

I am so thrilled to be able to share this amazing organization and event with my family, friends, and hometown.  

Do you want to help out?  
  • It would be great if you would sign up for the Pap Rally & 5k.  You can sign up here to participate in the 5k.  Don't be scared off my the fact that it is a 5k. You can run, walk, or jog.  You could even just hang out at the Pap Rally.  Signing up includes some goodies while supplies last so be sure to get signed up!
  • Start a team and recruit participants.
  • Post the flyer at your work, gym, school, library, anywhere you can think of!
  • Share this post on social media so the word gets out.
  • Come out and support Cervivor!

I am really looking forward to seeing you all at the event!

There is also a Cervivor School which will be held in Louisville August 19-21.  This event is open to cervical cancer survivors or patients as well as women living with HPV.  It is free for women in the Kentucky area and it will be an amazing, empowering, experience.  Here is more information about Cervivor School.  You can find the link to sign up here for Cervivor School Louisville.

I'm available to answer any questions you might have about either of these amazing opportunities!

Here is the information about the event, straight from the Cervivor website:
Cervivor School is for cervical cancer patients and survivors 25 years or older who are motivated to advocate for HPV and cervical cancer awareness as well as create meaningful relationships with other survivors and experts in the field; all to ultimately change the future of women’s health.
The event will be led by global cervical cancer advocate Tamika Felder, founder of Cervivor.  As a 15-year Cervivor (cervical cancer survivor + passionate advocate) she is dedicated to empowering women around the world, giving them the tools needed to share the authenticity of their cervical cancer stories.
At Cervivor School you’ll get:
– essential knowledge about HPV, cervical cancer, and cancer prevention;
– training in impactful storytelling so you can share your experiences with confidence and authenticity;
– support from and bonding with other women who have been right where you are; and
– access to experts in areas such as media, advocacy, scientific research, healthcare, communications, psychology, and therapy.
As a graduate of Cervivor School, you’ll  be on your way to becoming a Cervivor Ambassador; committed to using your voice to advocate for the cervical cancer movement and fostering positive relationships with other Cervivor Sisters.
Cervivor School Louisville will start with dinner and reception at 6:00 on Friday, August 19th at Birracibo Restaurant in downtown Louisville.  Saturday and Sunday will be spent at The Muhammad Ali Center.  Cervivor has a block of rooms right next door at The Galt House – in the heart of Louisville!  To reserve your room at the group rate ($124), please call 1-800-The-Galt (1-800-843-4258) and identify yourself as a part of Cervivor School group by July 20!
If you’d like help with funding your way to Cervivor School, please consider using this site to do so! https://www.crowdrise.com/cervivor-school-kentucky/fundraiser/tamikaandfriendsinc. If further assistance is needed, please contact info@cervivor.org.
Don’t hesitate to register!  We’ll get back to you with specifics such as addresses, attire, agenda and more!
Please go to www.cervivor.org for more information about our wonderful organization!

WHEN
Friday, August 19, 2016 at 6:00 PM – Sunday, August 21, 2016 at 6:00 PM (EDT) 
WHERE
The Muhammad Ali Center – 144 N 6th St, Louisville, KY 40202

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Intimacy & Cancer...

7/26/2016

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I am honored to be able to write for multiple outlets, including the I Had Cancer website. A few months ago I had a request to write about intimacy and cancer.  It was then that I decided it was time to talk about how cancer can have a direct impact on your sexual interactions in the future.  I wanted to address concerns that individuals impacted by cancer might be thinking, but not ready to say.  I wanted to speak for those who don't want to talk about this.  I wanted to speak up for those who didn't even realize it was something that could be related.  I wrote a post entitled  The Stages of Sex After a Cancer Diagnosis.  I was very pleased with the article and I hope that you will be willing to take time to check it out.  
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Cancer and sex: do they go together? Can they go together? I have cervical cancer and it isn’t going away. Does that mean I can never have sex or experience intimacy again? Absolutely not. However, it sometimes feels that way.

My vagina has been trying to kill me for years. That is how I feel, anyway. My cancer started out growing on my cervix, so mentally it is hard to stay outside of my own head during sex. It is hard to not think about this thing inside me which continues to attempt to kill me, and the fact that it all started out right there! It makes it hard to stay in the moment. 

When I get asked the question “Can cancer and sex go together?” my answer starts out in a way you might not imagine. We actually caught my cancer because I was having sex. One of the symptoms of cervical cancer is abnormal bleeding with intercourse. My husband, then my boyfriend, asked about the bleeding as it became increasingly worse. 

I remember the last time we had sex before my diagnosis. It wasn’t because it was the most amazing night of my life or anything dreamy like that; I remember it because we were away at a conference and staying in a hotel. We had sex and afterward it looked like a graphic murder scene. I can only imagine what the hotel staff must have thought about when they came in to clean the room the next day. 

My spouse said, “That’s it, no more sex until you get checked out and see what is going on.” The threat of no sex actually pushed me towards seeing my doctor and directly led to getting my diagnosis of cervical cancer in October 2012. It felt like the world was crashing in around me. I never even considered how it might impact my sex life, I just wanted to get the cancer out!

Has your doctor ever talked to you about sex and cancer? I would guess not. It’s time to take a look at sex and cancer in a few ways. Let’s break it down by stages of the cancer story:

Diagnosis 

Your sex life could change, even before diagnosis. Sometimes sex can trigger symptoms of your cancer, such as bleeding with intercourse. Sometimes cancer causes your hormones to get crazy. You might not feel like having sex or you may go the opposite way and want sex all the time. It is hard to say and it varies person to person. One might also find that your sexual abilities are not impacted at all, while another person might find that those body parts just doesn’t want to work. Once you have a diagnosis you will have the mental aspect to cope with as well, and this too can have an impact on your sex life. Bottom line: your sex life might begin to change before you even enter treatment.

Treatment 

Sex and treatment? This is an entirely different ballgame. The wide variety of treatments available in cancer can have an even wider range of impacts sexually. You could find yourself with extreme nausea and fatigue, with sex being the furthest thing from your mind. You could find yourself in a treatment or have a surgical procedure that will put you on restrictions as to how long you have to wait to have sex. 

Personally, I had multiple surgeries and each one seemed to extend the amount of time before sex was even an option. After surgery often comes more treatment, sometimes chemo and/or radiation. I know during radiation I was able to have sex. I remember a particularly entertaining time at my radiation oncologist when my husband thought he should ask the doctor if it was okay to have sex. My doctor replied, “I’m all for sex, no problem there.” My husband joked that he was worried he would come out like a glow worm. As uncomfortable as it might be, take the time and ask your doctor if you are unsure if you are fit for sexual activity based on your treatment plan. 

And let’s not forget about menopause. That’s right-- menopause can be a side effect of cancer treatment. This is a beast all in its own. Vaginal dryness, hormones gone wild, loss of desire. All of these are pieces that you have to overcome if you want to have a fulfilling sex life again. 

Remission 

I have to be honest here, I haven’t made it into the remission stage for any long period of time and I am living my life with cancer, so I am going on what I hear from my cancer friends. It. Gets. Better. It might not be today, it might not be next year, but sex after cancer gets better. Things might be different. They might not ever be the same. You might need lubricant. You might not be able to be as spontaneous as you once were. You might not be able to have sex in all the same ways and you know what, you might not even be able to have a sex life that even resembles a “typical sex life.” That is okay. Find your groove. 

I asked a friend about sex and cancer and she said she is all for it, but immediately realized that maybe she should be talking to her doctor about it. She had recently been notified that her blood work indicated her counts were low (neutropenia), and she realized she could be putting herself at further risk--risk she didn’t even think of. 

Cancer means you have to worry about things you never thought you’d have to worry about. Sex shouldn’t have to be one of them, but it is. I hope that throughout your cancer story you find your groove and keep it! I hope that sex doesn’t become difficult. However, be prepared because you need to make some adjustments along the way. Sex can change due to cancer, and that is okay. Physically your body will be different after treatments. You might look different, you might have scars, you might have numbness, and you will definitely feel different. 

Don’t try to be someone else’s version of sexy. You’re your own version; embrace your cancer body. Celebrate the things you enjoy sexually and understand you might have limitations. Those limitations are okay. Find your new normal, embrace it, and enjoy life!
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Time In (and out) of the Eddy

7/18/2016

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PictureFD WV Family - Photo by Jam
I just experienced an amazing life changing week.  The funny thing is, it isn’t even a change I realized I needed in my life.  I spent a week with a group of amazing individuals on a First Descents FD1 experience.  FD1 is the original First Descents (FD) experience.  I was able to attend a multi-day adventure centered around white-water kayaking on the New River Gorge in West Virginia with an amazing group full of fellow young adult cancer survivors and thrivers.  

I am deeply vested in multiple cancer organizations, each meets a different need I have. I advocate with an amazing organization, Cervivor.  My family meets locally with support groups at a great facility, The Cancer Support Community. Both of these organizations that I participate with are intimately important to me.  I don’t know where I would be today without Cervivor and the CSC.  I didn’t know if there was enough space in my heart to let in another group.  I didn’t know I needed to open up to another group.  I thought I was totally fine.  I was wrong.  FD filled a void I didn’t even realize I had. 

I was desperately missing out on authentic interactions with other young adults who have had experience with cancer. I didn't even know that it was something I wanted, I thought I was completely fine. I found out about FD by reading someone's blog while researching cervical cancer.  One of the amazing experiences she had before she passed away was attending a FD1 experience.  I immediately researched FD and applied.  I honestly just wanted to go out and do something cool, I never imagined that I would develop such a bond with the people. I was thrilled when it came time to find out if I would get to attend an event and embrace their motto of #outlivingit.  I thought it would be a lot of fun to learn to do something new and as a bonus I would get to meet some other people.  I never imagined what I would take away from the week.  If you know me personally, I am not a crier.  I cried more after the final evening event at FD than I have my entire cancer experience combined.  I wasn't ready to go back "to the real world."  I'm still not ready. I'm here though.  Moving forward and working to embrace my life, working to be out living it!  

PictureTeam Regulators
Adventure!  The week was filled with amazing adventures.  We started our first day getting outfitted by our fabulous river guides:  Utah, Shark Attack, and Snak Pak. When we made it on the water, we started out by learning the basic moves in a kayak.  We learned to go straight and then jumped into learning how to do a wet exit, or wet release, from the kayak.  That basically means we had to flip ourselves over and be able to escape quickly.  Once we proved we could do that it was time to speed up the learning progress.  We had to see how far we could ferry into the current without having to turn into it.  I tried, I flipped, I escaped.  I did it again (without flipping), and again, and again.  The following days on the river were nothing short of amazing.  The entire FD Family did AMAZING!  We broke into groups so that a river guide would be close by at all times, I was a part of Team Regulators:  Snak Pak (our guide), Trips, Hurricane, and myself (Left Eye, we all get nicknames at FD) were able to so many amazing things together.  We pushed each other past what I imagined I was capable.  We kayaked miles through the New River Gorge on rapids up to class 3+.  We would get to play around and go backwards down the rapids, have contests to see who could go the furthest without putting a paddle down in the rapids, and pick our own route (always the craziest route that we were warned about).

PictureNew River Gorge - Photo by Jam
I was the first one in the water on our second day.  I was also the first person to flip into the water that day.  Those rocks just jump out at you!  That is okay though, we ran the same stretch of river again and I was able to redeem myself by missing the rock the second time around, even if that rock is now named "Left Eye's Rock"!  There are so many amazing experiences on the water I could talk all night about them.  One time I thought I was for sure going over but I somehow managed to correct myself by catching my hand on an invisible rock under the water and shifting my hips.  Snak Pak looked at me and said "I was more scared for you then you were, you didn't look worried at all!"  That pretty much encompassed my spirit on the water.  I knew I could get out if something bad happened so I wasn't going to let fear slow me down!  Our third day on the water was amazing.  We visited a hidden waterfall.  We bonded and became family even more.  On our final day on the water it was by far the most amazing. We got to jump into the water off of some awesome rocks. Thanks to Utah's encouragement, I learned how to flip over inside my kayak and do a T-rescue, this is nothing short of a miracle for me. I normally hold my nose to even swim so to flip calmly upside down in the middle of the river and wait for another kayak to come up close enough for me to grab on and shift my hips to flip upright was one of the most amazing feelings! I wanted to do it again and again once I figured it out.  I am pretty sure Trips and I scared some guides when we decided to do a T-rescue in the middle of the river without anyone near us.  We weren't worried. I got my head up and was ready to shift my hips!  The final day was also graduation day, we each got to do a rapid individually for graduation while the guides and staffers cheered us on from the sidelines.  I cannot even describe the feeling.  I went down the stretch of rapids thinking about how on the first day I couldn't even get into the current at first without flipping and here I was going down this amazing stretch of rapids independently.  After graduation rapid we hit Surprise Rapids. They told us about them and how crazy they were, we had the option to opt out.  No way was I doing that.  Team Regulators was the first team with hands up to go through the meat of Surprise Rapids. Utah told me he saw me flip over twice before finally making it out of my kayak when I was in the midst of Surprise Rapids.  There is apparently video footage coming so I promise to share that as soon as it is available!  Needless to say, it was a crazy rapid.  You first made it through a large wave then dropped into a hole to hit the monster wave.  Looking back at the pictures I realized Trips and I hit Surprise together.  When I did my flips and escaped I was disappointed at first, then I came out of the rapid and saw Trips floating too and I immediately started laughing and smiling.  Then everyone else came floating after too. That wave was intense, amazing, and if I could have done it again immediately I absolutely would have. None of us made it through, our entire group was laughing and smiling even though we had just all had to emergency exit our kayaks!

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Surprise Rapid - New River Gorge - Photos by Jam
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PictureHawk's Nest - Photo by Jam
Magic. Our time spent off the water was nothing short of magical.  Even our time spent traveling to and from locations was great. I traveled with Pedro, one of our Camp Leads.  We rocked out the best music around with many throwbacks to the 90s.  We did daily "van selfies" and made lifelong friends during the travel time.

We spent a day "off the water" and our entire group headed out for a visit at Hawk's Nest and Mills Creek where we took an airtram ride down the mountain, hiked up, and spent the afternoon playing in the waterfall.  

After the waterfall fun, our group split up and some of us went to visit the Mystery Hole, if you don't know what it is sorry.  First rule of Mystery Hole is you don't talk about the Mystery Hole.  We ended our afternoon off by visiting Fayetteville.

Each night we were greeted by our amazing chef and sous chef with the best tasting healthy food I have ever had.  The amazing BissyLou and SouShee Not Fired were rockstars!  FD even has a cookbook with amazing recipes available.  They would come out to the porch and just make you feel at home.  We would have time together as a group to be spent as we wished.  There were many impromptu games such as volleyball, tetherball, corn hole, and I even convinced many of them to play Scattegories one night.  We would finish our nights together with a campfire and each one was nothing short of amazing.

Although the time on the water in the rapids was amazing (I'm looking for a kayak now) what I took away from my FD1 experience is a family.  I took away the FD Family Love.  I will never forget the amazing things I was able to experience and I can't wait to experience more FD and get involved.  I am in it for life now!

My heart absolutely grew while I was in West Virginia.  It grew enough to hold all the participants, volunteers, camp leads, and guides. However, it also feels like it broke off into pieces too. As I was reading through the posts by my amazing FD Family I read one that really spoke to me, a quote found and shared by the amazing BissyLou:  You will never be completely at home again, because part of your heart will always be elsewhere. That is the price you pay for the richness of loving and knowing people in more than one place. It is well worth the price, I think. I really couldn't have explained my feelings better than this.  There was most definitely enough room in my heart for my FD Family, it just means my heart is spread across many miles.  FD Love to my FD Family.  Until next time. XOXO.

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The Hidden Waterfall
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Eddy Flower - Photo by Jam
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Cancer Moonshot Summit

7/7/2016

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Last week, on Wednesday June 28th, I had the opportunity to gather with an amazing group of individuals at the Cancer Support Community Central Indiana with one common purpose: to double the rate of progress in our understanding, prevention, diagnosis, treatment, and care of cancer.  

More than 270 events in communities across the United States took place on June 28th as a part of the Cancer Moonshot Summit.  Vice President Joe Biden joined over 350 researchers, oncologists and other care providers, data and technology experts, patients, families, and patient advocates, among others at Howard University and addressed the nation.  Joined by more than 6,000 individuals at events in all 50 states, Washington, D.C., Puerto Rico, and Guam a great initiative was put into motion.  This was the first time a group this expansive and diverse met under a government charge.  It was very powerful to take part in such an amazing initiative.

The Summit I attended was a group of 35 individuals who all have some sort of "stake in the cancer game."  These individuals ranged from the President and CEO of the Cancer Support Center of Central Indiana, President of the Indiana Cancer Consortium, Little Red Door, various hospital representatives, nurses, and advocates.  It was a passionate room!  I was honored to attend as a Cervivor Ambassador and cervical cancer advocate.

We met first as a whole group and discussed what we are doing now to help with the progress in understanding, prevention, diagnosis, treatment, and care of cancer.  We also were able to hear about some of the lead up to the event, such as each of the centers being on a conference call with Vice President Joe Biden.  This was quite an amazingly orchestrated event.  We watched Vice President Biden's address and then we broke off into our focus groups.

I went with the group charged with discussing early prevention and screening.  Our discussions really focused on how to get education about cancer screenings out to the public.  We had great discussions primarily about cervical, breast, and colorectal screenings.  We also talked about the benefits of the HPV vaccination and how Indiana could really increase its efforts in wide spread HPV vaccination and education.
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We ended by coming back together as a whole group and discussing what each group came up with.  There was a reoccurring theme:  You don't know what you don't know.  Education of the general public is one of the main things that needs to occur.  In addition to education of the public it is important for individuals with cancer to have better access to information about clinical trials.  It is also important for organizations and researchers to share information across platforms.  It is time to speed up the progress!

Cervical cancer is poised to be at the forefront of the Moonshot Summit.  We know there is a preventative measure and that we could eradicate cervical cancer!  It is time for individuals to take vaccination as a key step to prevention of cervical cancer.  Co-testing, Pap and HPV tests, are also an important screening measure which should be taken for cervical cancer.  It is our responsibility to speak up and make a difference.

#CanServe: What type of goal can you create to support the #CancerMoonshot initiative?

​it is time for a change!

I personally made three goals:
  1. Commit to join the Indiana Cancer Consortium
  2. Commit to visiting local clinics and Planned Parenthoods to explore what type of HPV education is currently being provided
  3. Commit to being an active advocate for cervical cancer prevention and screening

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    Author

    Erica is a 32 year old cervical cancer advocate who is out living cancer for the third time. When she isn’t advocating for cervical cancer and HPV awareness as a Cervivor Ambassador, she previously oversaw the STEM program at the school where she was an educator; she now helps coordinate the robotics program. Erica enjoys spending time with her husband and son in their Indianapolis neighborhood, as well as pursuing new and adventurous hobbies. She can most recently be found fawning over kayaks and daydreaming of returning to whitewater kayaking with First Descents, an organization for young adults impacted by cancer. 

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