#CCAM

There are only 27 days left until Cervical Cancer Awareness Month. Unfortunately, it isn't like October - we won't see pink everywhere; there will be no sports teams wearing teal shoes & gloves. Yes, breast cancer is important. ALL cancers are important. But gynecologic cancers are still somewhat taboo. There is the stigma of sex. As a friend once said, her mother didn't want her to tell anyone that she had cervical cancer because it was "the bad girl's cancer."

It is past time to dispel those thoughts. We have a potentially fatal disease, and there is absolutely NO REASON that we should be made to feel less than because of it. None of us asked for it. None of us deserve it. January is our chance to talk, to educate people who are misinformed about cervical cancer.

In my opinion, talking about it is the best thing we can do. It breaks down walls, and shows other women that they are not immune to this disease. Encourage every woman you know to attend her well woman visits on time, every time. Too many of us put that off, for whatever reason, and when we finally went, it was too late.

Think about things you can do to impact women in your community. Contact the media. If you are dealing with cervical cancer, ask if they would be willing to do a story on your experience. Keep reaching out, and don't give up.

Husbands and partners play a role here too. They can encourage the women in their lives to have regular checkups. No woman enjoys having her feet up in the stirrups, butt scooted to the end of the table, a bright light shining on her vagina. But it makes it easier to have someone there holding her hand.

In January 2016, I'd like to hear a roar about cervical cancer. If each one of us makes the effort, our voices will be heard.

What can you do to make a difference?

Coming Up for Air

It's been radio silence for a while, and I apologize. A lot has happened over the past two months, and it has not been easy. I am floating on a sea of sadness. I have lost someone who means the world to me.

Not long ago, I blogged about my dear friend Melissa Fisher. I am sorry to say that Melissa passed away November 17 after a two year battle with cancer. Honestly, I felt like my heart was ripped out of my chest. Her passing was not sudden; two months prior to her death, her medical team told her there was nothing more that they could do. Hospice was set up, and she was fortunate enough to be able to go home, to be with her amazing husband Ed, her best friend Colleen, and her fur babies, Stewie and Lilly. This was what she wanted. It didn't make it any easier for the people that loved her, but it was HER choice. And through these last months, Melissa showed the grace and beautiful spirit that was her trademark.

My friendship with Melissa did not span decades. But cancer, that nasty, insidious disease, bonded us together. As I've said before, it's hard to deal with friendships when the other person is battling a life threatening disease. There is always that chance of losing them. And as a cancer survivor, it butts right up against my own mortality. It could have been me.

Melissa touched so many lives. Her story has impacted us all, made us wanted to be better because she was so good. Despite all the pain and struggle, she is now at peace. She is there in the stars above us, smiling that incredible smile, guiding us as we navigate this new stage of our lives. Her teal wings are beautiful.

Melissa, I will carry your love with me always.

The Agony of the Cancer Community

When I was diagnosed with cervical cancer, I joined several Facebook groups because I needed support. I needed to connect with other women who were going through what I was going through. I wasn't always vocal on these boards, but I got the support I needed. And I formed friendships with women beyond these groups that I will have a life long connection to.

These friendships are bittersweet. I have seen women go through recurrences. I have watched my dear friends die. I have waited for phone calls bringing the worst possible news. And it fucking sucks.

There is such a feeling of powerlessness. I want to make it better, but I can't. All I can do is pray, and that is not nearly enough. I can't save these women. I can't take their pain away. I am completely impotent.

Death is on my mind a lot lately. How to stop it. How I can't stop it. How there are no good answers, no rhyme or reason. And that really sucks.

I need these ladies in my life. I need to know that they are feeling the same things I feel, that their fears are as great as mine. I know that death is a natural part of life, but I would do anything to take away the suffering.

To my friends who are struggling right now, facing brick wall after brick wall, please know that I am here. I will never leave your side. I will love you forever and always. You have held me up when I couldn't stand on my own two feet, and all I want is to do the same for you.

Melissa Fisher, My Hero

Last summer, I met a woman named Melissa who would change my life. We connected through a Facebook group for women with cervical cancer, and we just kept growing on each other like mold. Before too long, we were #cancerbesties.

Mel was diagnosed in June 2014 with stage 1b2 cervical cancer. That's still considered an early stage, but it was agressive, and she did have to go through a lot of treatment - surgery, chemo and radiation. It was rough on her, but she was most positive cancer patient I have ever seen - "I'm gonna beat this." "I'm gonna kick cancer's ass." Because that's who she is as a person. She radiates love and positivity. She puts others before herself. For example, if I took a hiatus from Facebook, she will text me and threaten to send out the National Guard.

In October, Melissa finished chemo and radiation. That's a long damn time to go through all of that. She had side effects: chemo brain, nausea, food not tasting good, exhaustion. She still stayed positive. She and her fiance Ed had had to postpone their vacation to their happy place when she was diagnosed. So once she was done with treatment, with the help of Ed and Mel's parents, she got to spend her time in her happy place from November through January. She needed the break, to recoup mentally, physically and spiritually. And yes, because she is the photo queen, we got to see plenty of pics. Ed, family, and friends visited. She did come home for bits at a time.

And then the bomb dropped. She started having extreme pain, so her oncology team moved her PET scan up early. And what they found was devastating. Not only had the treatment failed to remove the cancer from her body, it had actually metastasized. Melissa went from being stage 1b2 with the hope of being NED (no evidence of disease) to being restaged to stage 4.

She said she couldn't be upbeat and positive like she was before. She needed time to  process. I have never felt so impotent in my life. This woman I love like she was my sister, my #cancerbestie, was living a nightmare, and I had no words or actions to make it better. But true to Melissa's indomitable spirit, she asked what was next. I won't go into all the consultations, options, clinical trials, etc. because I don't really understand them. Because I was lucky. But I will tell you all the amazing things that have happened for Melissa since she received that horrible news.

In April, Melissa's sister-in-law, Danielle, hosted a Beef & Beer to raise money for Mel's medical costs. There was food galore, drinks were flowing, a silent auction (I actually won a prize!!!!).

And then it happened. Ed took the stage with a minister and his best man, and one of Melissa's two best friends from forever, Colleen, was there too. And suddenly, Melissa was walking down the aisle with her father. To the great surprise of everyone in the banquet hall, Melissa and Ed got married. I still get chills when I think about it.

It was the most perfect, most beautiful wedding I have ever been to, and I am so grateful that I was there to witness it.









So let's fast forward to the last few weeks. Mel was in a clinical trial, but her tumors grew, so she was removed. She and her oncologist decided to put her on a dual chemo regimen. However, one of the drugs, Taxol, at full strengt, would cause her to lose her hair. So in true Melissa fashion, she went out with a bang. Melissa has long, smooth, shiny, beautiful hair that hangs halfway down her back. And facing losing that, like the true rock star she is, she dyed her hair...

TEAL!!!!!!

Yes, that is my #cancerbestie, looking like a sex machine, with her beautiful teal hair. Talk about going all in and truly representing your cause. She knew she wouldn't have it for very long, but as she said, "How often do I get an opportunity to go crazy with hair color!!"

There are so many things about cancer in women that are hard. Mastectomies, radiation damage, loss of fertility, and yes, hair loss. We feel these are the things that make us women. The truth is, they are not. And given the choice between no treatment and death, and treatment that can cause horrible side effects, but make you live, it's kind of a no brainer.

So Melissa started losing her hair. She was faced with a decision that no woman, especially with hair as magnificent and TEAL as hers, wants to face: to shave it off or to not shave it off? She worried she'd look like a boy. I'm sure she worried that she wouldn't be beautiful any more. But she made her choice.

"Looks like I left something at home today...oops!!!"

Melissa shaved her head. And guess what? She is as beautiful as ever, even more so because she was brave enough to make that decision. Do you see this woman with those huge blue eyes? Shaving her head only accentuates them. She is still the beautiful, funny, positive woman that we all know and love. Hair or no hair, Melissa you are beautiful inside and out. And did I mention funny? Check out the caption.

I had the honor of spending a few days in Delaware with Melissa and Ed over the summer. She was not feeling great, and was bummed that she couldn't take me out for at least one night on the town. But all I cared about was being with her. We slept on the couch together every night that I was there. We talked, we laughed, we were our usual #cancerbesties. Melissa's chemo regimen is intense right now, so I'm not sure when I will get to go visit her again. But I've got photos (selfie queens) and memories, and of course, Facebook. And I am sure, deep in my heart, that I will be with my dear friend again.

 I think I've done a good job of selling it out for you all the reasons I admire this woman. Ultimately, she is my hero because she NEVER GIVES UP. She has her bad days, but she bounces back, and is the same positive, uplifting, hilarious, loving woman. We all break down sometimes. Melissa gets back up and keeps fighting. Mel, if I never met you, there would be a void in my heart and I wouldn't know why. And I wouldn't have anyone to build the most insane farm ever with.

I love you, with all my heart, to the moon and back. Thank you for sharing your life with me. Thank you for the hugs and kisses. Thank you for being my #cancerbestieforever.

For the full story of Melissa's big fight, check out her blog, that OTHER "C" word.

xoxo
jennie

2015 National Race to End Women's Cancer

 
In April of 2014, I was diagnosed with stage 1b1 cervical cancer. I was devastated. I was 34 years old, how could I possibly have cancer?!?! It was definitely a life changing moment for me. I felt ashamed at first, and it took me a while to share my diagnosis. But I needed support! In June 2014, I had a radical hysterectomy that fortunately removed all traces of cancer from my body, and I have been in remission ever since. I have also been lucky to find the support I so desperately needed through The Foundation for Women's Cancer and Cervivor. I truly believe that I was able to beat this horrible disease so that I can be an advocate for cervical cancer screening, the HPV vaccine, and a source of information and support to other women going through this. By joining my team or making a donation, you are helping to do all those things as well.

The race is put on by the Foundation for Women's Cancer. Their goals are to:

• Raise public awareness of ways to prevent, detect and optimally treat gynecologic cancers;
• Provide education about gynecologic cancers and the importance of seeking care first from a gynecologic oncologist if a gynecologic cancer is suspected or diagnosed;
• Support promising, innovative gynecologic cancer research and train a cadre of clinicians/scientists to participate in clinically relevant research.

I need your help. Donations are of course welcome. If you are in the DC area, or are willing to travel to the DC area for the race on November 8, 2015, I would LOVE to have you on my team!

As an added incentive, Tamika Felder Campbell, founder of Cervivor, has generously offered to donate prizes to anyone who donates to my team in the next 24 hours (ending 10/8/2015). How cool is that???

You can make a donation or join my team by going to my team page, The Donation Page of Jennie Elms. Please pass this on to anyone in your life you think would be willing to donate. 

Thank you!

xoxo Jennie 

In April of 2014, I was diagnosed with stage 1b1 cervical cancer. I was devastated. I was 34 years old, how could I possibly have cancer?!?! It was definitely a life changing moment for me. I felt ashamed at first, and it took me a while to share my diagnosis. But I needed support! In June 2014, I had a radical hysterectomy that fortunately removed all traces of cancer from my body, and I have been in remission ever since. I have also been lucky to find the support I so desperately needed through The Foundation for Women's Cancer and Cervivor. I truly believe that I was able to beat this horrible disease so that I can be an advocate for cervical cancer screening, the HPV vaccine, and a source of information and support to other women going through this. By joining my team or making a donation, you are helping to do all those things as well. Please join me in my fight against cervical cancer! - See more at: http://www.endwomenscancer.org/faf/donorReg/donorPledge.asp?ievent=1131900&lis=0&kntae1131900=B680509917014DCABF238147FDD13848&supid=413310050#sthash.ky66vnmX.dpuf

Four Life Changing Days (Part 2)

Before I get in to the second two days of Cervivor School West, I want to mention someone who I somehow forgot to mention in my first post (so embarrassing!). We had the fortunate opportunity to have Dr. Ramani Durvasula, a licensed clinical psychologist in private practice in Santa Monica, CA and a Professor of Psychology at California State University, Los Angeles. Dr. Durvasula was 100% real, honest, and open. She talked to us about anything and everything, and I am now officially obsessed with her!

So day two of Cervivor School West! This day focused a lot on medical facts. We started off with Less Stress and More Life with cervical cancer survivor (20 years, WOOT!), author and wellness expert Mary Marcdante. She went through some body exercises to help improve our overall sense of well-being, and before we knew it, we were having a dance party to Shake It Off by Taylor Swift! I had definite white girl syndrome, which Chellese was unfortunate enough to witness. But the all time superstar was Lily - I've said it before, and I'll say it again, girl, you KILLED it!

Next, we focused on HPV, cervical cancer, health disparities and public health, let by Jesse Nodora, DrPH, and Ana Lilia Maldonavo, both of Project Vela (Spanish for sail). One of the best takeaways from this was how part of their program worked as patient advocates for women in particular for whom English is not their first language. A case manager such as Ana literally walks the patients through the entire process, helping them to understand their diagnosis and treatment in their own language, so they really understand.

Our next speaker was Rebecca Perkins, MD, MSc Boston University School of Medicine. She covered screenings and vaccinations, as well as misinformation and how we can combat it. There is a TON of misinformation out there regarding the Gardisil vaccine, so I was greatly appreciative to have so many facts to combat that misinformation!

At this point, we veered off schedule, and watched a film called Someone You Love: The HPV Epidemic. I had heard about this movie, and how wonderful it was, but I was not prepared to actually watch it. Don't get me wrong, it is real and raw, and completely authentic. The movie covers five women with cervical cancer and their journeys through the disease. I'm not going to provide any spoilers, but I highly recommend that you watch it. It is very emotionally overwhelming. As a cervical cancer survivor, as well as having many friends at different stages in the disease, I found a way to relate to each story. And I cried, hysterical flat out ugly crying. God bless Chellese - she scooted in close and held me until I could pull it together.

Fortunately, we moved on to a lighter topic - how to "Keep Things Sizzling" in your relationship beyond cancer. That's right, we talked about sex! Physical intimacy is very difficult for women who have gone through treatment for cervical cancer. There is fear. There is pain. For some women, radiation damage takes sex completely off the table for them. But there are things that can help. I won't get down and dirty, because I have family members who read this, but if you have specific questions, get in touch with me!

And then to close out the day, we were treated to an absolutely beautiful, sexy routine by burlesque dancer Hot Tin Ruth! This woman is my hero!!!! She even gave us lessons on some burlesque moves, and we wound up having yet another dance party!

Sunday morning was graduation day. Tamika handed out diplomas to all the newbies, along with incredibly kind words to each of us. I felt so proud - I am now a Cervivor Ambassador!

I have so many opportunities through Cervivior to advocate for cervical cancer awareness, screening, and vaccinations. I am incredibly blessed.

The biggest takeaway from this weekend is a sense of sisterhood. I truly fell in love with every single woman there. I am so appreciative of how they boldly shared their stories, how they laughed and cried, how we were all there for each and every one of the other women in the room.

Four Life Changing Days (Part 1)

It's been a while, so this is going to be a long read! I'm going to split it into two posts, because otherwise it would wind up being the blog equivalent of War and Peace.
So much has happened, the biggest of which is that Jeff and I got married! On August 7, at 6:00 pm, we stood in front of family and a few friends, and vowed to love, honor, and cherish each other for the rest of our lives. That needs to be a whole post in and of itself, so I'll give you a sneak peek of my absolute favorite picture of us of all time, and the abridged version, but I promise a post in the very near future dedicated to all things wedding!

We had everyone down for a week leading up to the wedding. There was plenty of potential for awkwardness with everyone staying on two of our boats, but everything went really smoothly. The day after the wedding, everyone took off, and it was just us (and our crew) for a week for our honeymoon.
People kept asking when we got back if things were different now that we're married. The answer to that is no, except for my last name! We had been together long enough, and worked on our relationship hard enough, that we have a really solid foundation.
Reilly started 7th grade. I can't believe I have a son in middle school! And in December, he will officially be a teenager, even though he's had the attitude of a teenager for a while now (read, surly). His school starts 2 hours earlier than elementary school did, so we are waking up in the wee hours - 5:15 am!!!! Neither of us are morning people. Every day I set out with the best intentions of being patient and calm. But by the third or fourth time I have to tell him to get up, I am raising my voice. Ok, I'm yelling. I'm trying to channel my inner zen. I'm a work in progress. And I'm human. I'm trying to cut us both some slack.

And now on to the other big news! In my last post, I talked about how I was going to Cervivor School West in San Diego. I had a basic idea of what the school would be about, basing off Facebook posts and Cervivor's website. I was so excited to learn more about this disease, and to meet a whole group of women who had been through what I had been through. Well, it was all of that, and so much more. I am absolutely not exaggerating by titling this post "Four Life Changing Days," because this experience changed me in the best possible ways.
I flew out to San Diego on Wednesday, the day before Cervivor School started. I was VERY anxious. I don't particularly care for flying, and flying by myself is even worse. But I wanted to go, so I left my guys at home, and flew across the country. I checked into the hotel, The Horton Grand, in the historic Gas Lamp district of San Diego. The Horton Grand is old fashioned and very quaint. And two rooms are supposedly haunted, rooms 209 and 309. Several of us experienced some odd things during our stay, so I'm a believer!
Things kicked off Thursday evening with a welcome reception. Tamika Felder, the founder of Cervivor, spoke to welcome us, as did Heather Banks, a Cervivor advocate and ambassador. We were treated to music by Unexpected Cure, a duo consisting of Rob and Stanzi, who are both cancer survivors, and use their experience to put a musical spin on healing. They modified the words to Imagine by John Lennon - "Imagine there's no cancer..." There were women like me who were attending Cervivor School for the first time, and there were also women who had attended Cervivor School before and were graduates. I talked to a few ladies, and wound up really bonding with one woman in particular (hi Melissa!) who I have a lot in common with aside from cervical cancer. As we talked and got to know each other, I found myself crying a lot. I was a little surprised by this. I'm over a year out from being declared NED (no evidence of disease), and I thought I had my emotions in check. But sharing my story with Melissa and listening to her story brought it right back up to the surface. I was told this was normal, that there is a lot of crying at Cervivor School, in a good, cathartic way. That was definitely true for me!
School was in session Friday morning! We had been seated around the tables in the conference room in the order of graduate, first timer, graduate, etc. This was great because I had a woman on either side of me who knew how emotional it was going to be. I started crying pretty early on, and the beautiful, kind woman on my right (hi Lori!) immediately reached out, put her arm around me, and rubbed my back. My first instinct was to feel completely ridiculous, but she just smiled at me and told me it was absolutely normal. Her reassurance let me give myself permission to let go and embrace my feelings, and I am so grateful for that!
Friday's focus was on telling our stories, and how to go about telling our stories in different situations (my first entry of this blog was my story). We covered both social media, and traditional media, how to be persistent, even the best times of the day to call media representatives, a kind of Media 101. I've definitely been using Facebook for my own grassroots advocacy, but Friday's speakers taught me how to be more effective.
It was so interesting to hear all these different stories from different women, and to realize how relatable they all were. Even if we were staged the same, our treatments differed. And our feelings about things were the same about a lot of things. We split up into groups to answer and discuss questions Heather posed to us, and we moved tables and teams for each new question, but the discussions were all very similar.
When I was first diagnosed with cervical cancer, I felt very alone. I found support through a group on Facebook, and have wound up making friendships with women from that group in real life. I have been lucky to have spent time with some of these women face to face. But I had never before been in a room with so many women who had been through what I'd been through, and really and truly GOT IT. It was wonderfully overwhelming, and I felt so blessed. I even found out that some of us at Cervivor School had mutual friends through the Facebook group (hi Erica & Marie!). We are all from different places, different socioeconomic statuses, different races, different religions. But we bonded so easily because we had all been touched by a horrific disease that has a stigma of shame attached to it. Cervivor School also helps to teach us how to advocate and knock down that stigma, so women will know that they are not alone.
So that's it for part one! I didn't cover every single second of what went on, so if you have further questions, please don't hesitate to comment here or on the blog's Facebook page. Stay tuned for Part 2!

xoxo jennie