First #CCAM Contest!

Since Friday is #NationalWearTeal&WhiteDay, and also the first day of #CCAM, let's kick the month off with a contest!

The first two people to leave a comment of a selfie of them wearing something teal and white will when a prize! It's a win-win situation - support cervical cancer awareness, and get a goodie bag in return!

Even if you are the first two to post, I still want to see your teal and white!

xoxo Jennie

National Wear Teal & White Day 2016

To kick of #CCAM, Friday 1/1 is National Wear Teal & White Day. Make sure you wear your teal & white, and encourage your friends and family to do so as well. Let's start the month strong!

I challenge each of you to take a selfie showing you in your teal & white gear and post it in the comments below, or in the comments on the My Life After Cervical Cancer Facebook page. The first three people who post pictures will win prizes! And who doesn't like prizes???

I'm really looking forward to #CCAM2016, and I hope you all will join in the conversations and comments. Let's spread the word that cervical cancer is important, and deserves the same recognition as other cancers. Let's knock down the stigma, and show the world that we are your neighbors, friends and family members, and we deserve support.

I'm looking forward to seeing your pictures, and sending out your prizes!

xoxo Jennie

January Is Almost Here!

And that means it's time for Cervical Cancer Awareness Month, or CCAM! Thirty one days of sharing experiences, learning how to fight this disease, and honoring those fighting and those whose battles are over.

As you've heard me say time and time again, not all cancer is pink. Breast cancer is absolutely serious, and no form of cancer is "better" or "worse" than any other. Cervical cancer is not something that is talked about enough, in my opinion, nor is it's precursor, HPV. So in January, we will wear teal, and talk about HPV, and Cervical Cancer, and what we all can do to pretty much eradicate this horrible illness (yes, that is true!).

So in four days, I'll kick off some great stuff here at My Life After Cervical Cancer. You can expect a new post every day, some awesome guest bloggers who will provide some different perspectives on the cancer experience, lots of great information, and maybe even a contest with prizes!

In the meantime, if there is anything you would like to read about, anything you'd like to know about HPV or cervical cancer, please leave it in the comments, and I will do my best to address it this month!

xoxo Jennie

18 Months NED

Today, I am 18 months NED! That's 547 days with no sign of cancer in my body. I didn't really know how to handle this day. Things have not been all unicorns and rainbows in my cancer community lately. I have friends whose cancer has returned. Friends whose cancer has metastasized. A friend entering hospice care. Friends living with daily treatments, and no end in side. And of course, I'm still dealing with the death of my dear friend Melissa. So to go nuts about 18 months of remission seems a little like rubbing some peoples noses in my good fortune. Because I do believe that luck plays a definite role in how our bodies respond to treatment. For some of us, it works; for others, it just does not.

I raised this question in an online group: am I being a jerk to call attention to this? And the answer I got was a resounding NO. That I should celebrate anything I want, and as often as I can. The women most vocally encouraging me to embrace this day are women still fighting for their lives. That floored and humbled me.

When I was diagnosed, I couldn't imagine making it to my first post-treatment check up. People told me that I would, and then I would hit 6 months, then nine, then a year. And they were right; all of those dates passed with a letter in the mail saying "Pap smear results normal." My mom and I had a wonderful party over the summer to celebrate our first cancerversary. Even though she was diagnosed with breast cancer two months before my diagnosis, radiation treatment caused her NED date to be closer to mine.

When you have cancer, there is nothing you want to hear more than the words "No Evidence of Disease." We all live with at least a low level fear of cancer returning, but when you are classified as NED, there is some breathing room until the next exam.

I chose to include this quote by Oprah because I think it applies to all of us, those still battling this disease, and those who have been declared NED. There is always something to celebrate in life, even if it just getting out of bed in the morning. Full disclosure: some days, washing my hair is my big cause to celebrate. But the point is, the more we look for the good things, the victories large and small, we can praise and celebrate our lives. And that in turn gives us a life of appreciation, of gratitude, of celebration.

My hope is that each of you finds something in your life to celebrate today. Whether it is a victory over a medical issue, or that you just look really good in your outfit today, own it, and celebrate the HECK out of it. I promise that that feeling of celebration will make today special, and that's pretty cool.

xoxoxo

jennie

Upcoming Cervivor Schools

In September, I attended Cervivor School West in San Diego (I blogged about it here and here). To be completely honest, in the days leading up to my departure, I totally wanted to back out. I have general and social anxiety, so this experience was going to throw me completely out of my comfort zone (My comfort zone consists of my bedroom. And occasionally my living room). I was going to have to fly by myself! Meet new people! Talk to those new people! But in the end, I went, because I really did want to go, and also my husband would probably have fed me into a wood chipper if I lost the cost of the flight. I'm not going to rehash the event, because I already wrote two blog posts about it, but I do want to say two things about Cervivor School West specifically:

1. I wish I had been more open and outgoing while I was there. These women made me feel safe from the very start (hi Lori!), but I still kept some of myself back.
2. Thanks to Facebook, I have been able to become closer to my Cervivor Sisters that I met in CA. It's bittersweet - yes, it is great to have their love and support on a daily basis, but it sucks that we're spread all over the country.

The good news is that Cervivor School happens all over the world, and there is no limitation on the number of times you can attend! There are two Cervivor Schools happening in January, and I'm attending one of them! The first is Hoosier Cervivor School, being held January 16 in Indianapolis, IN (for details, click here). Next is Cervivor School South, happening in Charleston, SC January 28 - 31 (for details, click here). I'm headed to Charleston! I would be thrilled to be attending either Cervivor School, because there are fabulous women that I met at Cervivor School West at both. Cervivor's founder, Tamika Felder, will of course be at both sessions (this woman is on the go advocating for cervical cancer detection, awareness, and prevention 24/7, everywhere. Forget Carmen Sandiego, it should legitimately be Where In The World Is Tamika Felder?). Indianapolis is being hosted by Erica, Heather, and Melissa. You can read each of their stories here on Cervivor's website, including Erica's husband JR's story about being a caregiver. Charleston is being hosted by Marie, whose story you can read here. I cannot say enough good things about these women.

So who should attend Cervivor School? Anyone whose life has been affected by HPV or cervical cancer. This means women who are HPV positive, women with pre-cancer, women who are in remission, and women who are still fighting this horrible disease. Caregivers are also welcome to attend, although there may be certain sections that will be for patients only. Cancer is not a solitary disease. When a woman has cervical cancer, so does her husband, her children, her parents, her siblings, her friends. Cervivor School helps to show that we are all in this together, that there is support available.

If you are interested, visit Cervivor's website (cervivor.org) to learn more about Cervivor, Cervivor School, becoming a Cervivor Ambassador, and even do some shopping.

Sexual Assault & Gynecologic Exams

No woman enjoys going to the gynecologist  to get a Pap smear. You are naked from the waist down, feet in the stirrups, butt scooted all the way to the end of the table, with a thin sheet draped over your knees to give the illusion of modesty. Meanwhile, your doctor has a lamp trained directly onto your vagina. Then comes the speculum to open up your vaginal vault so that your doctor can get a better look, and swap around with what are basically giant Q-Tips to take samples of your cervix and vaginal walls. Many women don't go for their well-woman visits when they should, just because the whole experience is so uncomfortable.

But what if you were a rape survivor?

Around 300,000 women in the US are sexually assaulted every year. This is only an approximation, because many women do not report assaults due to shame, feeling to blame, and denial. Many women are too ashamed to tell anyone at all, and therefore don't get the help that they need to deal with what has happened to them.

I am one of those women. I was raped by a stranger. I did not report it. I was drunk at the time, and felt like it was my fault for putting myself in a vulnerable situation.

Nearly a third of rape victims develop Post Traumatic Stress Disorder (PTSD). People with PTSD have flashbacks to the trauma - these can be triggered by sight, sound, smell. Dissociation, or the separating oneself from thoughts and feelings, happens to protect the victim psychologically. PTSD sufferers are also hyper-vigilant, always on the lookout for potential danger.

A Pap smear definitely acts as a trigger for a survivor of sexual assault. Regardless of whether you were raped brutally by a stranger or a person known to you, rape is an incredibly painful physical and emotional violation. When we are afraid, our vaginal muscles contract to try to block whatever is being inserted against our will. In the case of rape, unwanted penile penetration feels awful enough. But a metal speculum is even more painful, especially due to all the muscle clenching. It's a vicious cycle - the more your doctor encourages you to relax, the tenser your tend to become, making the exam even more painful and embarrassing, almost to the point of the original trauma itself.

Going to the gynecologist terrifies me, and it triggers memories of being raped. I sweat. I cannot relax. It hurts like hell. So for many years, I just didn't go. And I'm not the only one: many assault victims do not go for well-woman exams. This is dangerous for several reasons. Pap smears are performed to check for STIs (you may have to specifically request
 tests from your doctor), and to check for changes in the cervix that could either be pre-cancerous, or active cervical cancer.

So as a rape survivor, how do you handle going for regular Pap smears? In my experience, it's incredibly important to have a good "team." Ideally, this team should consist of someone you are close to, who you can trust to talk about your rape with; a therapist who deals specifically with trauma survivors; and a gynecologist who is understanding, and willing to go at your pace during the exam. There is a fantastic article on Jezebel on preparing for a pelvic exam after a sexual assault, written by a woman who was raped.

 Please remember that if you find yourself in this position, there is nothing to be ashamed of. You did not ask to be raped. But it is important to be current with your well-woman exams. They can and do save lives.

The Verdict on the Form Letter

I FINALLY talked to my oncologist yesterday, and got some answers about that scary form letter saying that I am HPV positive. He confirmed that it is a high risk strain, but couldn't tell me which strain exactly. He said that when they run the test, they run the sample against a panel of 13 high risk strains, and if any of them come up positive, you have high risk HPV. Since almost 100% of cervical cancer is caused by high risk HPV, I in all likelihood have had HPV for years, and it just lay dormant. Sneaky little virus, that one.

Of course, my main concerns were A. Does this increase my chances of a recurrence? and B. What does this mean for my husband's health? Yes, HPV can and does cause cancer in men - penile, anal, and throat and mouth cancers.


First of all, my oncologist assured me that my Pap results were normal, meaning no changes in the cells. As a quick aside, your body sheds old cells constantly, to make room for new, healthy ones. When the old cells don't shed, they clump together and form tumors, which is where cancer comes from. So the good news is that I am still in remission.

Since I had a radical hysterectomy when I was diagnosed, I no longer have a cervix, which means that cervical cancer isn't really an issue for me anymore. My doctor did say that high risk HPV could cause vaginal, vulva, and anal cancer, but the percentage of those occurring drop pretty dramatically the farther you get from the cervix (distance-wise). The best thing I can do is to take care of my body as much as possible, and of course keep up with my regular exams with my oncologist.

As far as my husband, he plans to talk to his own doctor about warning signs for penile or oral cancer. Since there is no test approved by the CDC to test for HPV in men, we will never really know for sure if he has it. Since HPV is so easily spread (it doesn't even require intercourse, just skin to skin contact), chances are high that he does have it.

I'm not crippled by anxiety now that I've had my questions answered. I have a low level of fear, but the only part of the fear that is new is with regard to my husband's health. I will always have some fear about my cancer recurring; the goal is just to not let it run my life.

I want to say thank you to all who prayed, sent love, and good vibes. Thank you to all who took the time to help talk me down off the ledge while I waited to hear from my doctor. I honestly don't know what I would do without this amazing community of women, all fighting this monster we call Cancer, who still find the time to reach out and say "I'm here for you."

Next Wednesday, December 16, I will celebrate 18 months in remission. When I received that letter, I honestly didn't know if that day would be worth acknowledging. But it is. Cancer came into my life completely unbidden, and I fought hard as hell. And I am still standing. So next Wednesday, we'll do a little something special to mark another milestone that I never thought I'd reach when I was first diagnosed.

xoxo jennie

The Form Letter... And The Cancer Saga Continues

In October, I had my most recent exam with my oncologist. He said everything looked good, so I headed out, glad to be done with the joys of a vault smear for four more months. On Wednesday, 12/2, I received a letter in the mail from Sibley Hospital, where my oncologist is located. It was just a standard form letter with the results. No big deal, I thought. My Paps had all been perfectly normal ever since I had my hysterectomy. It's not going to say anything meaningful right?

Well, we make plans, and God laughs.

The letter said that Pap was normal, but my HPV test came back positive. I have no shame admitting that. About 80% of Americans have some strain of HPV. I just had no idea what it meant for me in terms of my cancer. When testing for HPV, it is possible to determine the strain as well. This form did not show that.

There are actually more than 10 strains of HPV that are considered high risk. The most notable of these are strain 16 and strain 18, accounting for about 70% of cervical cancer diagnoses. But all of the high risk strains have the potential to cause cancer.

So what does this mean for me? Honestly, I have no idea. I am terrified that my cancer will come back; or that my husband has gotten HPV from me, and could develop cancer in the future. I have been calling and emailing my oncologist's office since I read the letter Wednesday night, and still have not spoken to anyone who can answer my questions. I've had some very knowledgeable friends tell me not to worry, but I just can't stop. I won't feel better until I talk to my oncologist, and he tells me that it's a low risk strain, and that it doesn't increase my chances of a recurrence.

This is what it is like to live with cancer. On December 16, I will be 18 months in remission. That doesn't mean I'm cured, because of course there is no cure for cancer. Doctors can remove tumors, but the cancerous cells can still remain dormant. If you are lucky, you remain in remission for the rest of your long, happy life. And if not, well, there are many different ways that things could go.

So for now I'm in a holding pattern. I can't move forward until I speak with my oncologist. And it's terrifying to not know what is going on, and what it really means. But I kicked cancer's ass once before, so if the absolute worst thing happens, I know I'll be able to do it again.

#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.