vaginal cancer

Kilimanjaro Cancer Crusher

It’s funny the way life has a way of twisting and turning in unpredictable ways. I never imagined that I would have cancer, let alone cancer in my vagina. I also never imagined that my diagnosis would lead me around the world to climb Mt. Kilimanjaro. But that’s exactly where I am heading in just two short months.

My adventure really begins with an abnormal Pap Test at the age of 34 after a routine gyn checkup. The moment the doctor told me I had HPV was something I will never forget. You could have knocked me over with a feather. I was surprised and mortified that I had an STI. Me? No way! But, yes, I am one of the 4 out of 5 Americans with HPV. Despite the several procedures my doctor tried to rid my cervix of the dysplasia nothing was working and I eventually had a total hysterectomy. HPV wasn’t done with me, however, and three years later symptoms returned and I was diagnosed with stage 2 vaginal cancer. This time surgery was not an option and I had two months of chemotherapy, external radiation and internal radiation. The treatment was successful and I have, very thankfully and gratefully, been cancer free for almost three years.

My cancer experience immediately brought life into focus and forced me to really examine what I was doing with mine. I rapidly decided upon 2 driving ideas….1) Although I was weaker and sicker than I had imagined possible, I was alive and recovering. I was determined to outlive my diagnosis and have as much adventure and travel as possible. And 2) I would dedicate my survivorship to prevent other women from living my experience and make my heartbreak count for others.

Since my treatment ended I have been working diligently on these two missions. I’ve learned how to whitewater kayak and paddled some of the most beautiful rivers and lakes in the South, and hiked the Rockies in Colorado and the Sierras in California. I met and was inspired by the adventure of an ovarian cancer survivor, advocate, and friend of mine to climb Mt. Kilimanjaro in Tanzania. Me? Sure, why not?! During this time I also became a passionate advocate for Cervivor and share HPV and cervical/vaginal cancer awareness and information at events and through social media.

Very quickly my two missions began to converge. My preparation and research of Kilimanjaro and Tanzania naturally brought me to global cervical cancer advocacy. I quickly uncovered the heartbreaking cervical cancer burden in Tanzania. Globally, more than 500k women will be diagnosed with cervical cancer and 270k of those women will die, 90% of them in underdeveloped regions. Women in Tanzania with the same diagnosis as me suffer from an astounding 80% mortality rate. A tragic combination of lack of reproductive health knowledge, access to medical treatment, trained professionals, and basic supplies usually means that women are diagnosed at more advanced stages than the typical American and often do not receive treatment.

The fact that so many women die at the hands of an almost completely preventable disease every year is a tragedy of epic proportion. There was no way I could travel to Kilimanjaro without trying to do whatever I could to help these women and communities. I pulled together a committed team of people, including my own gyn oncologist, to climb Kilimanjaro with me. We are dedicating our climb and have successfully met our goal to fund a cervical cancer screening clinic in Tanzania with the organization Cure Cervical Cancer. Our team leaves for Tanzania later this summer for the trip of a lifetime including a tour of a remote mobile cervical cancer screening clinic in Moshi, a 7-day hike up 19k feet on Mt. Kilimanjaro and a safari. We are training regularly, hiking a lot, and currently trying to coordinate our ridiculously long packing lists.

I came across a Steve Jobs’ quote the other day that struck me, “The people who are crazy enough to think they can change the world are the ones who do.” This whole adventure began with a “crazy” idea and a passion to DO something. With the help of my family, friends and supporters, my dreams are coming true and I could not be more humbled and grateful. My cancer does not define me, nor has it held me back. It fuels my fire to live my life with purpose and adventure. I hope my experiences inspire YOU – what’s your next adventure?

Read Sarah’s Cervivor story here.

Follow along with the Kili Cancer Crushers’ team on Facebook or Crowdrise.

Why October is the Worst

We didn’t get this post from Ambassador Danielle until very late October, and, because the National Race to End Women’s Cancer last week, we needed to write about that. It doesn’t make this post any less important. We are so proud and honored to have people like Danielle writing about and fighting for Cervivor. – Tamika

Photo by Greg McGoonPart of me hates to be writing this. Mostly because of the nonsensical war on women’s healthcare that the conservative right is waging once again via their attacks on Planned Parenthood. The last thing I want to do is make it sound like I’m trying to divide camps within the side for which I fight. But it’s important that I say this.

October sucks. It really does.

Within all its leaf changing, pumpkin-spiced glory, it is also 31 days of making people I care about feel discouraged.

Why? Because September is Gynecological Cancer Awareness Month and I would bet that 75 percent of the people reading this sentence had no idea that even existed. But everyone knows about October. Like my dad who puts his Christmas tree out the 1st of November, October pink starts to seep in sometime around the end of August.

You unfortunately can’t wrap the “below the belt” cancers in a neat pink ribbon. There’s uterine, ovarian and cervical, among others, and some 90,000 women are diagnosed every year. And to really fight for them? To raise even one tenth of the money that breast cancer awareness does? It means we have to talk about it. Really talk about it. And that is the last thing people want to do. Because it’s uncomfortable. Because it conjures up very specific imagery. Breast cancer survivors and battlers are to be revered by the media and society. Women with cancer in and around their reproductive system? Let’s sweep that quietly under the rug.

Why can’t my friend, a 13-year cervical cancer survivor who had a full hysterectomy at the age of 25 be commended for her struggle? Or my friend’s mother who beat unlikely odds for ovarian cancer not look embarrassed every time the subject comes up? For their fight to be heard in a sea of news outlets that don’t want to publish their stories in favor of another breast cancer advocate? These are the same outlets that refused to highlight the HPV connection to Farah Fawcett’s anal cancer because we can’t possibly discuss how people in the world might be having (gasp!) unprotected anal sex like many see featured on sites such as www.nu-bay.com so often.

Anal sex can also be facilitated through the use of sex toys such as butt plugs. Therefore, if you are using sex toys for anal sex purposes it is vital that you care for your toys properly. For more information take a look at this butt plug care guide: loveplugs.co/blogs/news/butt-plug-care.

But what can be done about this stigma? One particular media outlet has repeatedly reinforced this negative stigma with articles like “The Silent Shame of HPV,” containing anonymous stories about coping with it. Even worse, this more recent and incredibly tone deaf sexist piece “Iron Maiden Singer Vanquishes Sex Cancer.”

Recently xoJane published a fantastic article with The STD Project interviewing people who decided not to remain anonymous and instead confidently and intelligently spoke out about living with herpes — one of the most traditionally stigmatized health conditions of all. So you’re telling me that THE DAILY BEAST couldn’t find ONE person to speak to about HPV without condition of anonymity? I call bullshit. That and pure old fashioned laziness on the part of the writers. Because if you do even the lightest of Google searches you will find the Foundation for Women’s Cancer, ASHA, and Cervivor, all organizations with women willing to put a name and a face to a disease that the media would prefer to overlook. I emailed THE DAILY BEAST back when that first article published, calling them out on their negligence and their response was to say that people don’t want to talk about it because they are embarrassed. Dear editors, a title like “The Silent Shame of HPV” doesn’t help matter. You’re also incorrect because I’m not a journalist or a reporter and I can name 10 people off the top of my head who will talk about it because I’ve read their personal blogs online. Many people who have often enjoyed videos from TubeV Sex while also having sex and contracting the HPV making them brave enough to speak out about it but they won’t highlight those who are talking about the struggle.

pinktober1-44814_640x320But I didn’t write this in the hopes of starting a “boo to breast cancer” campaign. (Someone else must have thought of that name for a 5K by now right?) I just find all the hoopla over one disease so limiting and overall not the best course of action. A brave talented woman who best sums up some of the trivialization that Pinktober and pinkwashing has brought to the breast cancer movement is writer and breast cancer survivor Diane Mapes. She has from diagnosis to recovery mapped out a very honest and decidedly un-pink description of what she has endured but it hasn’t prevented her from covering and reporting on all kinds of health issues in her informative and forthright manner. Her attitude is one from which many other journalists could learn.

My point is that the benefit that breast cancer receives from all the October attention is confirmation that people are listening. They have a massive rapt audience thrilled to root for them and raise them up and make them feel good about their battle. Any other organization trying to raise funds for medical research and educational awareness would kill for even a small percentage of the breast cancer reach.

Ovarian cancer accounts for more death than any other cancer of the female reproductive system and cervical cancer is, for the most part, preventable, so why all the secrecy? It’s 2015. Aren’t there enough media outlets for more people to share their stories for the greater good?

I’m glad October is over because I’ve learned to dread October every year. It’s a reminder of the world we live in, and that it abides by a news cycle that would rather regurgitate the same story over and over rather than truly educate and move forward. That we won’t collectively strive for a better discussion about our overall health because certain things are difficult to discuss. It’s better to leave them unsaid and stick to talking about boobs or nothing at all. Or, we choose to not give a significant platform to women who have gathered up the courage to shout their stories and we stand there, smile with false sympathy and ask, “But do you have a celebrity spokesperson like Angelina? No? Oh then your story? Your pain? It’s not clickable.”

I’m giving you a whole year to think about this. Next October? And all year round? I’m asking you to think outside the bra. Don’t pat yourself on the back for praising a woman for her strength in her health struggles if you’re not taking into account the whole woman.

After all the primary fight for feminism has always been getting the world to see women as more than just a pair of tits.

– Ambassador Danielle