In the midst of this long cold winter, are you dreaming of summer? Can’t wait for sun, sand and swimming? Summer has always been one of my favorite times of the year, but sadly, not so much anymore. As a six-year survivor of vulvar cancer, summer has a whole different meaning to me now. Summertime now means sweating, itching and one miserable outbreak after another.
This March will mark another year for me as a survivor. But what does being a survivor mean? I think of a survivor as a person who has overcome something. I haven’t overcome this yet, and I don’t know if that’s in the future for me.
As my enemy continues to attack, I rather think of myself as a warrior still fighting the battle, not giving up, and always looking for more warriors to help me and educate me on strategies to maintain peace below the enemy line. As you sit there reading this, you’re probably asking yourself, “What is she talking about?”
Let me explain, and shed some light on a rather dark, rarely discussed subject:
My name is Dena; my friends call me De. I had my first surgery for vulvar cancer in March 2009. My surgeon told me I was one of the youngest patients he had treated, and that he would be surprised if I lived another four to five years. I looked at him as if he was crazy. I was thirty-eight at the time, still considered myself to be young and for the most part healthy. I could not imagine I wouldn’t be living in a few years.
For the next few days I cried and reflected. Why me? Then I decided to prove this doctor wrong, to educate myself and fight for my life. Since then my first surgeon retired, and I have had two more surgeries.
After I was diagnosed I did what most other women do when they are diagnosed with Vulvar Cancer, I put on a mask, smiled and hid behind that for a long time. Last year I finally proved my first surgeon wrong. I removed my mask in June and decided it was time for me to share my story with other women.
It was difficult at first, but once I removed my mask I was given one of the best challenges I’ve ever faced. I was asked to be a speaker and share my story at a local library. I had never spoken publicly before. But thanks to a very supportive co-worker who encouraged me and stood beside me, it was that day I realized I’m a warrior. People asked questions and wanted to know more about the enemy. It came so easily to tell my story and to help them have a better understanding of what Vulvar Cancer is.
Shortly after that speech, I felt I might have the answer to the question, why me? I was meant to share my story with others. As I was preparing for my first National Race to End Women’s Cancer, the Foundation for Women’s Cancer’s major annual awareness and fundraising event, I held a bake sale where I provided literature about all women’s below the belt cancers – what I call the enemy line.
Women then felt comfortable coming to me with questions, and I discovered I am not alone, that there are others. I realized maybe I was my physician’s youngest patient, but there are more women out there my age or even younger who just haven’t removed their masks yet. Maybe they are still looking for other warriors, because when you stand alone it’s hard to face your enemy. When you stand with other warriors it’s a little easier.
So now that you know a little about me, let me give you a better understanding of the enemy. My vulvar cancer was a result of HPV that was misdiagnosed for a few years. This ex-sun worshiper has a very hard time enjoying the sun now, due to periodic outbreaks of the HPV. Sweating and moisture create misery for me, including uncontrollable itching. Scratching causes a rash of small bumps, swelling and sores.
Undergarments and pants become very uncomfortable, panty hose are worse. Ointments can help but must be used sparingly as they contain steroids that can cause the skin to thin out and tear.
At times my enemy goes away but it’s never gone forever. The most common time for outbreaks is during my period; a week later it clears up. The key to maintenance is keeping dry. Ice packs are great to help sooth itching, also sleeping without undergarments at night can be more comfortable. No body washes or soaps containing perfumes, as these aggravate the condition.
I hope I have shed some light on my enemy. If you have any questions, please remove your mask and ask. I’m always willing to help. You are not alone.
I also invite you to join my team, Vulva Vixens, for this year’s National Race to End Women’s Cancer, Sunday, Nov. 8 in Washington, DC. Register at endwomenscancer.org – the website will be live in March. Join the movement!
I wish you the best in your battle.