Friday, January 19, 2018

Cervivor No More

A lot has happened in the last 6 or so months. I am no longer associated with Cervivor. This was my choice, but the repercussions have been devastating. I quit because I did not like the direction the group was moving in - demotions if you didn't raise money constantly for the organization, focusing on cancer "celebrities" whose cervical cancer was not caused by HPV, as has been the focus, I believe, since the group's origin as Tamika and friends. I spent the entirety of Cervivor School Del Ray Beach in my room with a thrown out back. I was called a drug addict, and completely ostracized. None of this mattered to me at the time, because I was done with the group.

Very recently, Cervivor founder, Tamika Felder, banned some long term members of the group - because they were friends on social media with a woman that Tamika has issues with.

I'll pause so that can sink in.

Yes, women were removed from a cancer advocacy group because of who their friends were.
Does that sound like a dictatorship? Yeah, it does to me too.

Cervivor is NOT a support group, but so many women involved with it find the support they need to get through cancer treatments, and to emotionally heal after a cancer diagnosis. And that was ripped away from them, all because of a woman on their friends list.

There was no warning given. No chance to explain that maybe they hadn't had contact with this woman in a while, but hadn't given it enough thought to remove her from their friends list. It happened that fast - all of a sudden, they found themselves outside of a group that had meant so much to them.

Please stop and think about that - these women were ostracized from a CANCER GROUP because of a name on their friends list. These women are devastated. They are angry. They feel betrayed. Can you blame them?

Please do not associate with Cervivor. Do not join their dictatorship. Do not donate money to them. The childishness and hypocrisy has got to stop. Groups like this should be about allowing members to turn their sense of helplessness over their diagnosis into action, not some Mean Girls clique about blindly following the leader and being told who you are allowed to be friends with.

Monday, April 10, 2017

Cervivor School 2017!!!!

Cervivor is holding a Cervivor School in Delray Beach this June! If you've been reading my blog, you've probably read about my experiences at the three Cervivor Schools I've attended. If not, you can read about them herehere, and here.

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.
At Cervivor School you’ll get:
– essential knowledge about HPV, cervical cancer, and cancer prevention from top experts in the field;
– 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.
There is also an event page set up for Cervivor School.
Please consider attending...The times that I have attended (3!) have impacted my life is so many positive ways... If you are not able to attend please consider donating to Cervivor. They offer travel scholarships so that women may attend this life changing event. Your donation could make all the difference to someone just like you!

XOXO Jennie

Saturday, March 11, 2017

Another Trip Around the Sun

March 7 was my 37th birthday. I have a much different perspective on getting older than I did a few years ago.

My 34th birthday was not my favorite. I felt old (I know, it's all relative). A month earlier, my mom had been diagnosed with breast cancer, and I was dealing with the huge fear that I would lose her. So I wasn't really excited about celebrating.

Then a month later, I was diagnosed with cervical cancer.

Talk about putting things into perspective. When I received my diagnosis, I had no idea what it really meant. Would I have to go through chemo and lose my hair? Would I die? I was at a total loss, completely unmoored. I began the cancer journey: finding a GYN oncologist, having a biopsy, determining a treatment plan.

All things considered, I was incredibly lucky. My oncologist originally staged me at 1a1. After my cone biopsy, he changed my staging to 1b1 - the cancer was more advanced than he had thought. He recommended a radical hysterectomy, and on June 16, 2014, I had surgery. He removed everything except for my ovaries - he didn't want to put me into early menopause because I was so young. In addition to removing my uterus and cervix, he took samples from my vaginal wall, and 26 lymph nodes. Testing on all the tissue removed showed no cancer aside from what was in my cervix. No further treatment was needed.

When I think back now to how distressed I was about turning 34, I feel ridiculous. If it weren't for luck, that could have been my last birthday ever.

I cherish my birthday now, because it means I'm still here. I make a big, goofy deal about it. I spend the day doing what I want. This year, I wore a "Birthday Girl" shirt, and a crown.

My darling husband, Jeff, and I went and got pedicures. My sweet nail technician, Lana, got me a beautiful bouquet of pink roses!
After pedicures, I went to Sephora to have my makeup done. Nothing like being pampered on your birthday!

We went to dinner at the Palm, and it was wonderful.

And because I have two sets of amazing parents, I get to celebrate twice more!

I am incredibly blessed. Three years ago was the scariest time in my life. Thank god I was able to beat cancer, and I have many, many more birthdays to look forward to. No matter how old I get, I will always be grateful for those trips around the sun.

xoxo Jennie

Saturday, January 14, 2017

Amanda's Story - Guest Blog Post by Amanda Tanay

Amanda and I became friends several years ago, when we were diagnosed with cervical cancer right around the same time. She is such an amazing person, and has gotten me through some really rough times. I love her more than words could say, and I am so grateful for her ongoing love and support.


The moment you’re told there’s even a possibility you have cancer, the entire world seems to break apart and fall at your feet. At least that’s how I felt while sitting in my gynecologist’s office in July 2014. I’d been there less than a year prior (October 2013) after a few occurrences of bleeding after intercourse. At that appointment my doctor told me she felt I had a sensitive cervix due to hormonal changes, but she “ran some tests” to be on the safe side.

But by July 2014 I was questioning my body more and more. The bleeding after intercourse had become more frequent and I was suddenly dealing with watery discharge as well. It was more than I was willing to deal with and had hoped to discuss with my doctor changing my birth control pills in order to fix whatever “hormonal changes” were causing these problems. But when she did an internal exam the look of worry on her face and the mention of how easily I bled during the exam caused a million alarms to sound in my brain.
She wanted me to have a colposcopy (an exam where they more closely examine the cervix) and biopsy to see what we were dealing with, but the word cancer was mentioned as a possibility. She wanted me to come back later in the afternoon or the following day, but I begged her to do it immediately. Twenty minutes later I was holding a nurses hand as a lie with my feet in stirrups, tears flowing from my eyes, and my doctor poking and prodding at my cervix. When the exam and biopsy were complete, she told me she’d call me in a few days with the results.

That appointment was probably about an hour, but the memory of it flutters quickly through my mind because it was merely the first of many that followed with more doctors. But I remember during that hour asking how I could possibly have cancer when I’d had a clear pap exam last October. That’s when she told me I hadn’t had a pap exam in October when I’d visited with my first concerns of bleeding after intercourse. My last pap test had been two years prior and was clear, which was why she had only swabbed for the possibility of infection at my previous exam.

I was dumbfounded, and still am today, by the fact that I didn’t receive a pap test after discussing my bleeding, one of the few symptoms of cervical cancer. It upsets me to know that the bleeding I experienced in 2013 was more than likely an early symptom that progressed farther and farther until my July 2014 appointment which led to a phone call approximately five days later telling me I had cervical cancer and should make an appointment with a gynecologic oncologist immediately.

Of course I am most angry with my gynecologist who’d known my history of having HPV and abnormal pap tests off and on since 2007. A woman whose job it was to examine women daily and make choices to help them stay healthy. This was the woman who delivered my beautiful daughter in 2009. The woman who also treated other female family members. When I went to her in 2013 with a symptom of cervical cancer and the knowledge of HPV and past abnormal pap tests sat in black and white in my file, she made a professional choice not to do a pap test. A choice that allowed my cancer to progress. A choice that caused me to undergo a radical hysterectomy at the age of 34 as well as the five rounds of chemotherapy and 28 rounds of external radiation that followed.

And as angry as I am with my gynecologist, I’m also upset with myself for not asking the right questions during that first exam. I assumed that during my internal exam that when she swabbed me it was for a pap test. I never asked her what tests she was running. I never asked her if the bleeding could be associated with any previous issues I’d had. There was not a thought in my mind at all that I could suddenly have cervical cancer caused by the HPV that I’d pushed to the back of my mind after quite a few previous clear pap tests.
Two years later I am healthy with no evidence of disease (NED as we cancer survivors call it). I’ve been told I should consider filing a law suit against my gynecologist for not doing the appropriate test when I’d first complained of a symptom. But then I think to myself, what would that do? Sure, I could use the money, but what’s done is done and nothing can change the fact that I had cancer. I can no longer have children, but I am blessed to have my daughter. I have anxiety issues and the thought of cancer returning terrifies me, but I am alive.

It’s because of my doctor’s mistake that one of the most important things I tell women when it comes to my cancer journey is to be your own best advocate. No one else knows your body as well as you. If something doesn’t feel right, make an appointment and talk to your doctor about it. Make sure the appropriate tests are done for every possibility based on your symptoms. And if they’re not, find another doctor. Don’t wait until things get worse. When it comes to cancer, the earlier it’s caught the better the chance of survival. Refuse to become a statistic.

Friday, January 13, 2017


My sex life is dysfunctional. I know the reasons behind this, but I have not yet been able to conquer the problem.

First, when I was 19, I was raped by a bouncer in the parking lot behind a night club. I didn't tell anyone for years what had happened. I was in the club, very drunk (and very under age), and I had  gotten separated from my friends. As I walked past, this bouncer grabbed my arm, and led me out a side door. I figured that I was getting kicked out of the club for underage drinking. Instead, we wound up in the employee parking lot. He took me to his truck, pushed me inside, and raped me. When it was over, he led me back inside, and walked away. He never said a word to me the entire time.

Then, when I was around 33, I started having pelvic pain, which eventually led to my diagnosis of cervical cancer. The pain was actually not related to the cancer at all - I think it was just my body's way of alerting me that something was wrong, and I fortunately kept pursuing the matter with several different types of doctors, until I was finally diagnosed.

So I have PTSD, both from the rape and from the cancer. And I still have pelvic pain. My vagina is like a no fly zone. Sex is painful for me, and causes bleeding. As a result, my husband and I don't have sex frequently at all. I feel horrible for him. We are still newlyweds, and we should be doing what newlyweds do. But instead I make excuses, and we don't have sex, and we miss out on the intimacy of making love with the love of our lives.

Another issue I have faced is basically a distrust of my vagina. In my mind, it goes something like this: I had sex, and got HPV, an STI. The HPV gave me cervical cancer. Therefore, I got cancer from having sex, and that makes sex dangerous.

During my oncology check up yesterday, I had a long conversation about this with my doctor. He did a very thorough pelvic exam in addition to my Pap smear, to make sure that my vagina was fine from a physiological standpoint. He said that everything looked good. The pain is kind of a self-fulfilling prophesy: I expect sex to be painful, so I tense up, which does in fact cause it to hurt. The bleeding is more of a chafing issue than anything else. We discussed several options to improve my situation:

  • Using a dilator. Dilators are mostly used by women who have had brachytherapy, or internal radiation, which shrinks and stiffens the vaginal vault. His opinion is that a dilator is not necessary at this point, as my vagina is in good shape.
  • Lube and foreplay. My oncologist thinks that engaging in extended foreplay would quell my anxiety enough that my vaginal muscles will relax, and penetration will not only be possible, but enjoyable. Lubricants will help facilitate the relaxation, as well as stop the chafing that causes the bleeding. Lube is especially helpful for women who have had their ovaries removed during their hysterectomy, which causes menopause, and makes dryness a major issue. Fortunately, I still have my ovaries, and am not in menopause. My vaginal dryness is, like everything else, centered around my anxiety.

My husband and I have decided to go with the second option, using lube, and aiming for 15 to 20 minutes of foreplay before attempting penetration. We also agree that if standard intercourse is not possible, there are other things we can do sexually, like digital penetration or oral sex.

The most important part is the intimacy that comes from making love. If one partner avoids sex, it has a tendency to make the other partner feel like they are unattractive to their mate. This is totally not the case at all - my husband is the handsomest, most sexy man on the planet, and I love him more than anything. I would do anything to make him happy.

I know that other women deal with these types of issues after treatment for cervical cancer, many to a much greater degree than I do, especially those who have had internal radiation. I know it's hard, but my advice to you would be to use lots of lube, set the mood, spend a good amount of time leading up to the main event, and remember that sex can be a whole lot more than just penis-vagina penetration.

xoxo Jennie

Thursday, January 12, 2017

The Oncology Check Up

Today I go see my oncologist for my 4 month check up. Even though I'm a little over 2 1/2 years NED (no evidence of disease), I still see him every 4 months for a vault smear, and the occasional HPV test. As a general rule, I'm totally fine with seeing him every 4 months. It just means I know with more frequency that the cancer has not come back.

But then there is the anxiety surrounding the visit. I haven't been sleeping very much for the past week, most likely because my brain is screaming "Cancer! Danger, Will Robinson, CANCER!!!!!" This is completely illogical, because I have been NED since my hysterectomy on 6/16/2014, with no questions at all during any of my follow up appointments. But I've learned that my brain is not always rational when faced with the prospect of cancer.

Even though my chances of a recurrence are ridiculously low (something like 5 - 10%), each visit to my oncologist provokes a deep fear that he will find SOMETHING. Since I no longer have a cervix, a recurrence would most likely be vaginal or vulvar. I should probably spend some time checking myself for anything out of the ordinary, but I don't.

Confession time - ever since my diagnosis (April 2014), I have steadfastly refused to put my fingers in or around my vagina. The main reason is because my anatomy has changed. Instead of a cervix, I have a cuff, or a doctor-built pseudo-cervix. Because tissue from my vagina was removed during my hysterectomy for testing, my vaginal canal is shorter than it used to be. Gone is the vagina I spent 34 years knowing well, and I am honestly terrified to introduce myself to my new vagina.

So today I will head off to my oncologist, he'll do the smear, and the whole thing will be over in about 5 minutes. Seriously. 5 days of stressing for 5 minutes of examination.

And then comes the waiting game. If all is well, I'll get a letter in the mail, possibly as long as a month after today's visit (my onc's office is slightly technologically challenged). If, god forbid, there were to be bad news, I'll get a phone call. So I'll keep stressing for about a week or so, then figure the path reports have come back normal, and just wait for my letter.

I deal with my anxiety with medication, and I feel no shame or guilt about that. Valium is my friend. I also exercise and meditate (don't laugh, but I do Chakra meditation focusing on my pelvic area and sex organs to bring as much good juju as I can).

How do you deal with the anxiety of oncology check ups? How frequently do you see your oncologist? And how far out are you in your journey?

xoxo Jennie

Wednesday, January 11, 2017

Honoring Melissa McGroerty Fisher

For those of you who have not read all the previous blog posts, Melissa McGroerty Fisher was a wonderful woman I met through an online community for women with Gyn cancers. We hit it off immediately, and became cancer besties. Sadly, Melissa lost her life to metastatic cervical cancer. You can read previous entries about Melissa herehere, and here.

Melissa McGroerty Fisher

On November 17, 2015, my dear friend Melissa McGroerty Fisher passed away from metastatic cervical cancer. Exactly one year later, I drove down to Hilton Head, SC, with her husband Ed, her parents Elaine and Tom, and two of her best friends, Colleen and Amy.

We arrived to beautiful weather. In the early evening, while it was still light out, we went to Tower Beach, Melissa’s happy place. Ed read a beautiful statement, opened the small urn of ashes, and let them float into the breeze.

It was amazing– Melissa’s ashes dancing on the wind, with the sun shining through. It was a truly fitting send off for a woman who was not of this earth. She was so beautiful, both physically and spiritually, that she could not be bound to this place.

We spent the rest of the weekend reminiscing about Melissa, telling stories, and visiting her favorite places on Hilton Head.

And if you are at Tower Beach, on the right day, with the right light, you can see Melissa’s spirit dancing across the waves.

I will always love and miss Melissa. Every morning when I wake up, I speak to her, and I say, “I live this day for you.”