Chemo number four was the first time I didn’t end up in the emergency room a week later. I knew I’d been spending too much time there when one day the ER doc walked into my cubicle and we both went “Do you remember me?”. I’ve had low potassium, a pulmonary embolism, severe dehydration and a urinary tract infection. I’ve looked mortality in the eye too many times. A friend calls me Rasputin.
I knew I was going to get cancer. I’ve lived with a ticking time bomb inside me since I was diagnosed with complex hyperplasia without atypia – pre-cancerous cellular changes in the lining of the uterus – in 2008. I’ve been telling people for a long time I had cancer. Expecting you have it and hearing you have it are two different things. No one wants to hear they have cancer. I got two for the price of one.
I started bleeding about a year ago. I knew something was wrong. I’d gone through menopause in 2006. At first it was occasional spotting, but it progressed to the point where I was bleeding six to seven times a month. I had to start buying sanitary napkins again. I felt like a teenager going through her first menses. But without insurance, I couldn’t go to a doctor.
I’m a freelance writer who specializes in health and wellness issues. I was interviewing Dr. David G. Mutch, director of the Division of Gynecologic Oncology at Washington University School of Medicine in St. Louis, for a story I was doing on endometrial cancer when I mentioned the symptoms I was having. I remember he got real quiet and then he told me to schedule an appointment with him immediately.
My endometrial biopsy was the same day as my mother’s 80th birthday – March 4. The pathology report confirmed I had a clearly differentiated Stage 1 endometrioid adenocarcinoma. My doctor scheduled a da Vinci hysterectomy for April 18.
I remember waking up in the recovery room and I knew something was wrong. I was in a lot of pain. My doctor found a large mass on each of my ovaries. I was prepared for endometrial cancer. I’d done my research. I knew everything there was to know. No one expected to find ovarian cancer. It was a complete surprise.
The American Cancer Society reports that about 21,980 new cases of ovarian cancer will be diagnosed in 2014 and about 14,270 women will die. I am one of those statistics. It’s a sobering realization.
I was terrified. I knew nothing about ovarian cancer. All I knew was that it was usually an automatic death sentence. No woman wants to hear she has ovarian cancer. I was lucky mine was caught early. I have Stage 1C ovarian cancer. The histologic type of the tumor is mixed, seromucinous and classified as high grade.
What if I hadn’t been bleeding? What if I hadn’t interviewed Dr. Mutch? What if I hadn’t told him my symptoms? What if he hadn’t told me to make an appointment? I would probably have never gone to a doctor.
Not many women are as lucky. Ovarian cancer is called the “silent killer” and by the time it’s diagnosed, it’s Stage 3 or 4. I’d been experiencing some of the early symptoms. I’d been having a lot of bloating and was waking up two or three times a night to go pee.
My doctor recommended six rounds of chemotherapy with Taxol and Carboplatin. These are the gold standard for treating ovarian cancer. To say chemo has been tough is putting it mildly. I wouldn’t wish this on my worst enemy. These drugs are designed to take you to the edge of death without pushing you over it. I celebrated my 51st birthday getting poison pumped in my veins.
My nurse coordinator told me I would lose my hair between my first and second chemo rounds. I called my hair stylist to schedule a pre-chemo haircut. She was wonderful. She fit me in at the end of the day and it was just the two of us in the shop. I didn’t realize how important my hair was to me until she started cutting it and pieces started falling on the floor. She kept commenting I had a nice head shape as she gave me a buzz cut. There were a lot of tears and hugs that night.
Psychologically, I thought I was prepared but losing the stubble was one of the hardest things I’ve ever done. I was losing another piece of myself. I had lost my reproductive organs and now I was losing my hair. What else did I have to lose? Walking out of her shop that night was tough. I felt like a freak. I felt like everyone was staring at me.
I still have peach fuzz. One day I was in a hurry to catch a bus. I rushed out of the house without putting on one of my baseball caps. I’d completely forgotten I was bald. Bald is beautiful. It’s a symbol of the fight I’m going through. I plan on keeping my collection of baseball caps as a reminder of what I’ve been through.
I often catch women giving me what I call “the pity look.” The way I see it, it’s their problem, not mine. I’ll often take off my hat just to see what their reaction is. I’m the one with cancer, not them.
I don’t know what I was expecting when I was diagnosed but it wasn’t this. I didn’t expect it to be this hard. I thought I would just breeze through it, but boy, was I wrong. There are days I wonder if it’s worth it. I get so tired of being sick and tired and of not being able to do anything. I want my real life back.
Nothing about this has been easy. Everything that could go wrong has gone wrong. I’ve experienced every side effect there is, including those only a small percentage of women have. Right now I’m having a skin reaction to the Taxotere, one of my chemo drugs. My face, hands and feet are lobster-red, scaly, itchy and flaky. Pretty soon I won’t be able to go out in public without causing mass hysteria.
My friend, Marsha Coplon, tries to come to every chemo session. She told me she was glad she was there for my first one when I had a severe allergic reaction to one of the chemo drugs and nearly died. It’s terrifying when you can’t breathe. It felt like there was this huge weight on my chest and my throat swelled shut. Thank God for the wonderful oncology nurses in the infusion center. They were able to bring me back.
My doctor has never seen anyone experience as many problems as I’ve had. Before my fourth round, he asked me if I wanted to take a break to let my body recover after I walked in his office with three pages of symptoms that I was having. I told him no. I’m so close to the end I just want to finish and get this over with.
The chemo is working. My baseline CA125 post-surgery was 45.6. It dropped to 29 after my first round of chemo and 13 after round two. It is currently nine. Normal is between 0-30. My doctor likes to see a reading around 10 or 11.
I wouldn’t have made it without my friends. They have talked me down off the ledge more times than I can count. The enormity hit home one night when I was sitting in my bathroom and realized I could never have children. I literally broke down and bawled. I had never wanted kids before, but I started crying over all the children I had never had and now could never have. It hit me—I had cancer, damn it. I could die.
One friend, L. Dale Walter, did me the honor and wore my colors – peach and teal – into battle when he jousted in the Abbey Medieval Festival in Brisbane, Australia. He said they announced my name over the loudspeakers several times and said “he was fighting cancer one lance at a time.” The Australian media even picked up the story. What girl can say that?
I see cancer as a gift. I know that’s an odd thing to say but it’s true. It’s given me the opportunity to reach out and educate other women about ovarian cancer and it’s given me the chance to share my story. No woman should ever have to hear she has ovarian cancer. No woman should ever have to go through this alone.
I was sitting on a bench when a woman came up to me and asked me how it felt to lose my hair. She told me I was glowing and I seemed at peace. She was terrified. She had recently been diagnosed and her doctors weren’t telling her anything. We had a long conversation and I gave her my phone number and told her to call me anytime. I want to be there for other women who are going through this.
My journey is only beginning. It’s hard to believe it has only been six months. My last round of chemo is September 3, and three weeks later I’ll go for a CT scan. I’ll continue to need follow-up exams and blood work for the rest of my life. My doctor places me in the greater than 50 percent group of women who survive.
Everyone tells me to think positive. I’m a realist. No one knows what is going to happen. The chances of recurrence are highest in the first two to three years. I know this could come back. This is my new normal.
I asked my doctor before my second round of chemo what would happen if I discontinued treatment. He looked at me and told me I’d die. I’m not ready to die yet.