It’s time to shine a light on a dark secret I have kept from everyone including my family. I have kept my secret for many reasons: 1. I am not a fan of pity; I do not want anyone to pity me at all. 2. Fear. 3. I did not want the secret to be the highlight of every conversation, and didn’t want to be asked a lot of questions, partly due to not having all the information and answers I needed.
So as I approach the five year mark of carrying this secret, it feels like it’s time, it’s past time actually. You may ask why now? Why do I want to bring light in now? Because I believe it’s important not only to me but to many others out there living and dealing with the same darkness. So as hard as this is for me to come out and share, it’s important that I do.. Here’s my story.
In 2009 I was finally diagnosed with Vulvar Cancer. I say finally because it was six physicians and many misdiagnoses later. Honestly I had given up, I was tired. I had what appeared to be a discoloration of my skin, found by my significant other. He asked me if I’d noticed the dark spot on my labia (I’m substituting the proper term here; that word was not in his vocabulary at the time). I had not noticed.
As time went by the dark spot took on a life of its own, changing from bluish to purplish, to black. The skin texture even changed over time and appeared to have a bunch of little small bumps, almost like a rash. It itched terribly. My doctor told me it was a “birthmark.” My response to that was, “I’m 38 years old and I am just now getting a birthmark?
One diagnosis followed another: I had an allergy to my under garments, soap, tampons; it was a yeast infection; and the one that stood out most, that it was some kind of STD. I started to think my significant other of 8 years had gone outside our relationship. We decided to go anonymously to Planned Parenthood to find out what STD it was. After an agonizing wait, I was informed I did not have an STD and neither did my significant other.
So here we were back at square one. It was now time for my annual appointment, and I had already decided to find a new GYN, so with a recommendation from a well respected physician I went to a local practice. It was there I met my angel in disguise.
Here’s where my life takes a whirlwind spin. As the appointment began, my new doctor asked all the usual questions regarding my medical history, and I shared all the important information. My new “birthmark” immediately became the topic of discussion. First she asked if I’d ever noticed it, and next if I’d done anything about it. I shared my folder with my entire medical history. “You do know this isn’t a birthmark? She asked. “Has anyone done a biopsy?”
The doctor said she knew what the dark spot was but wanted a biopsy to confirm. She believed it was squamous cell carcinoma, a form of skin cancer, which of course I had never heard of. The biopsy results confirmed that it was cancer and I was referred to a GYN Oncologist, as my condition was the scope of what my doctor could do. I will be forever grateful for this decision on her part.
After many hours on the Internet reading about what I have and what to expect, I didn’t sleep very well. I made an appointment with a gynecologic oncology group for two weeks later. I faxed over the referral as requested with the biopsy report; fifteen minutes later the surgeon called. He wanted to see me right away, that afternoon at his office an hour away. I was at work and couldn’t do that, so we agreed I’d come first thing the next morning. At this point I knew this was really serious, I was scared and nervous, with so many thoughts and emotions racing through my head. Why me? If this was diagnosed correctly back at physician one, would I be going through this?
Meeting with the surgeon confirmed exactly how serious this “birthmark” had become: Stage 4 Vulvar Cancer. He wanted me in surgery immediately. I wept in fear:; all I could think about was my hoo-hah being cut, are you serious?! My GYN oncologist spent a lot of time with me, comforting me and educating me. Surgery was scheduled for two weeks later; I don’t believe I slept during the entire wait. I had an emotional birthday — I wasn’t even 40 and felt I’d been given a death sentence. I choose not to share what I was going through with anyone except my boyfriend and my daughter. As I said I am not one for pity, and also couldn’t handle questions about this shocking turn of events.
Fortunately, the surgery was not as bad as I’d feared, but the surgeon informed me I was the youngest case the office ever had, and I would be lucky to see my daughter graduate from college, which was two years away. This was not the life I expected, but here I was. I had two options: I could go out back and start digging my hole, or I could pick myself up and prove the oncologist wrong. Well guess what: I went to my daughter’s graduation, and then I watched her graduate with a Master’s Degree this year. Keep me down NEVER!!
Once you have been through an ordeal like this you start to become your own advocate. Doing regular self exams, if you develop an itch or see a spot you go to hyper mode. Earlier this year, I knew instantly that the cancer was back, there wasn’t a doubt in my mind. I called my gynecologist’s office (the angel, not the surgeon) and told the secretary it was back. I was out enjoying my day off with a close friend; we had just finished lunch when the call came to come right in so she could take a look. At that point I decided to share my story with my friend.
Two days later a biopsy confirmed what I already knew. Here we go again, at least this time I knew what to expect. Of course, life is full of the unexpected and since my last surgery my GYN oncologist had retired. I wish I knew who authorized the retirement of one of the best doctors I ever encountered, besides my angel. This surgeon was top notch in my book, best bed ide manner, very patient, understanding, compassionate, and all without time restrictions — I never felt rushed.
After hours of additional research I was very happy to find his clone! My first question was, “Are you planning on retiring anytime soon? Or moving, anything that will force me to have to find yet another oncologist? Happy with the response the appointment moved forward.
I have this thing I do that tests a physician’s sense of humor and breaks the ice. It also lets me know if the doctor has a human side. As usual I was escorted to the exam room and instructed to undress from the waist down, remove all undergarments and lay a sheet across my lap. But I didn’t get undressed and here is my logic: I don’t know this person at all, have never met them, hell, I can’t even spell their last name. Have we gone out on a date, did we have dinner and drinks first? So why would I sit in a room with no clothes on from waist down for a total stranger? The new doctor came in, introduced himself and shook my hand, and started to go over my history (passing my test so far). He then asked if I had any questions and of course I had many, all of which he answered (passed with flying colors). He then asked if he could look at the area of concern, excused himself and told me he would wait outside the door, and for me to give a yell when I was ready. Extra credit!
After the exam he told me this time I could have the growth removed with laser surgery, and thoroughly explained the details. Having found a clone, I felt I was in good hands and could trust this surgeon with my hoo-hah. I then asked what he thought when he came in to examine me and I wasn’t undressed. He told me that he just redirected the way he does things, and asked me why. I shared my date theory and he laughed and said, “I still haven’t bought you dinner or a drink and you still undressed for me. Are you that way for all the men?” It was official: the clone has passed the test and earned extra bonus points too!
Here we are more than halfway thru 2013 and I still have this deep, dark secret that very few people know, including my own family. Surgery completed, and working on recovery, I’ve had time to reflect, still learning more as time goes by. I do not know one other person who has what I have, and have felt like I am fighting a war alone without any weapons at all. But while researching on the Internet I came across The Foundation for Women’s Cancer — you would have thought I hit the lottery! I have finally found someone, I have actually found lots of people that are dealing with what I am dealing with. I felt so alone and it was so good to find that there are other women soldiers out here fighting the war with me. As I read every word on the site and all the stories these brave women shared, it was at that moment I decided it was time, I need to be strong, I need to be brave, so here I am shining my light on my story, exposing myself not only to the surgeon I just met, but to all my family, friends, and soon to be friends. I want to make them aware I am here with you, you’re not alone, and we are fighting this war together.
The Foundation for Women’s Cancer made me feel I am part of something, I am part of a movement; I am part of something big that is going to shine light on the darkness and implement change. And that I am not alone. Other women need to know this organization is out there. The gynecologic oncology offices need to share this information about websites, support groups, anything that can provide patients with support. Information should be included in the appointment. I so wish it didn’t take me almost 5 years to stumble across the Foundation!
My next move was to sign up to go to Washington, DC in November as a runner in The National Race to End Women’s Cancer, and to create a team. I did my part — I signed up and registered a team, “Vulvar Vixens.” My goal is to raise $2500.00; another goal is to run the race, which is big for me as I am not a runner, and training has officially started. I am running as a SURVIVOR. My dream is for awareness, education and a cure. I want to be proactive instead of reactive.
By shedding light on the darkness and removing my camouflage, I encourage you to share my story, support me, and all the other women facing this struggle with me, as I run my first race ever as a Vulvar Cancer Survivor. Five years strong, I am me. I am still Dena, I have not changed. The secret is out. Support The Foundation for Women’s Cancer and please join me at the National Race on November 3.
Thank you in advance for your support,
Vulvar Vixens Team Captain