I was diagnosed with vulvar cancer in May 2013. Vulvar cancer is so rare that there is no color to represent it. You know, pink is for breast, white for lung, purple for pancreatic, etc. The closest thing is cervical, which is teal and white. So I wore and handed out teal and white bracelets to friends and family. It was as close as I could get.
Don't get me wrong: there is a bond between all cancer patients. After all, we are all in the "C" club. A club we did not ask to join and don't really want to be in.
But there is nothing like first-hand experience to relate to others who have the same type of cancer. So much of the healing and dealing with cancer process is talking to others that have walked that road.
Meeting another vulvar cancer patient
Most people don't know much about vulvar cancer, except it's a below-the-belt-female-parts cancer. When people would ask what kind I had I could see their eyes glaze over as I said vulvar. The conversation stopped there. Some blushed and laughed nervously. I would laugh, too. So I began to just say, "It's like cervical cancer."
Then, this past April, while I was waiting for my three-month checkup in the gynecologic radiation area of Mays Clinic, a lady in a wheelchair caught my eye. Her husband was wearing a Texas A&M University Aggies ball cap. I am an Aggie, too, so I started a conversation.
His wife asked what kind of cancer I had. I said, "It's like cervical. How about you?" She replied, "I have vulvar cancer." I couldn't believe it! A kindred spirit and someone who had dealt with the same treatment and side effects was right in front of me. Like me, she was waiting for an appointment with Patricia Eifel, M.D.
I nearly jumped off the chair and told her I, too, had vulvar cancer. We began to talk like two old friends who hadn't seen each other in years. I was the first vulvar cancer patient she had met. We hugged and didn't want to let go. We took several pictures together. I carry her picture on my phone to this day.
My vulvar cancer comrade
We exchanged contact information, and we have emailed and texted each other for support. We talk about radiation scars, urinary tracts, colon side effects, ointments and other things that no one wants to talk about. It is helpful to know she and I are comrades in this battle against vulvar cancer.
Her name is Betty. That's a beautiful name to me. Here's hoping you find a Betty or two on your journey. It makes all the difference in the world.
How I'm helping other vulvar cancer patients
I wanted to pay it forward and be there for other women with the same diagnosis, so I joined the Anderson Network. I filled out the forms, had the phone interviews and was accepted.
Now, if someone is newly diagnosed with vulvar cancer and calls the Anderson Network, I can share my experience with her. I can let her ask me a million questions while giving her hope and an empathetic ear to listen. That's something I didn't have during my vulvar cancer surgery and treatment, all 30 radiation treatments with some chemo of Cisplatin thrown in for good measure. That comfort is priceless.
I encourage you to reach out to others in your circumstances and be a light in their world. What you have endured can give others hope.