Gaining a Community and a Cause

I had never heard of ovarian cancer. Breast cancer, yes; lung cancer, yes; pancreatic cancer, yes. Prostate cancer is well documented on my dad’s side of the family, but OVARIAN cancer? I never heard of it, never knew anyone who had it.

A common question is, “What were your symptoms?” I usually giggle and tell them that the first concerning symptom was an unusual vaginal discharge. An uncomfortable expression will usually appear; however, I’ve shared my story often enough that I’m not embarrassed and consider it a public service announcement.

In hindsight, the discharge was not the first symptom. I had been feeling extraordinarily tired and taking two-hour naps daily. Suffering from irritable bowel syndrome with diarrhea (IBS-D) starting in my 20’s, stomachaches or other gastrointestinal distress was normal for me. I had backaches, but because I had slipped a disk in high school, that was normal as well. I had noticed that my seatbelt seemed tighter, and I figured the bloating was due to perimenopause, which had been confirmed the year prior at age 44.

During a road trip to California, I talked to my husband about the bundle of ailments I was experiencing. We both agreed that I should contact someone as soon as we returned to Phoenix. Easier said than done: my gynecologist had retired a couple of years earlier, and I wasn’t excited about finding a new one (we know how much fun that can be, right ladies?). I looked through our in-network providers after our return and picked one based solely on my intuition.

When I called the office, the receptionist said it would be eight weeks before I could be seen. I told her I didn’t think I could wait that long, and she found me an earlier appointment on May 6, 2014. The doctor sent me for a transvaginal ultrasound, and two hours later, her name was announced by caller ID. There were vascular masses on my ovaries, she said, and scheduled me for a CT scan. The detailed scan showed the tumors were likely cancerous, so exactly two weeks after my first appointment, I went into surgery to remove my ovaries and fallopian tubes. I started chemotherapy with carboplatin and Taxol three weeks later, six infusions, three weeks apart.

In October 2016, I was painting a room when I felt pain in my lower left side. It persisted, and I promised my husband that I’d move my regular CT scan up if the pain continued for a week. The scan on November 17 showed a mass near my left descending colon. The cancer had returned.

The second debulking, or tumor removal, resulted in removing half of my left descending colon, followed by six sessions with the “Red Devil” (Doxorubicin) and carbo. Afterward, I started a PARP inhibitor for maintenance and have been NED (No Evidence of Disease) for 3.5 years. I must add that there was a silver lining to the dark cloud of recurrence: the bowel resection cured my irritable bowel syndrome! The theory is that the cancer attacked my body’s weakest point, which turned out to be the constantly inflamed part of my bowel.

Being freed from IBS-D along with reaching NED status sparked something within me: anger. My chronic anxiety and its chorus of “What Ifs” combined with IBS had created a vicious, paralyzing cycle, holding me back from things I wanted to do. Now I was determined to break the cycle. I faced the anxiety by banishing the “What Ifs” and began embracing “Why Nots.” Four months after finishing chemo, my husband, sister, and I traveled to Crater of Diamonds State Park in Arkansas. We didn’t find any diamonds, but we had fun looking! I also applied to be a guest speaker for a new patient education initiative for a pharmaceutical company and was accepted. This has allowed me to travel, meet sister survivors and raise ovarian cancer awareness from coast to coast.

The Phoenix Chapter of the NOCC has been beside me as I walk this teal-colored path. I attended my first Run/Walk in 2014 and was welcomed -literally- with open arms. The dedication displayed at the monthly meetings solidified my decision to become involved as a regular volunteer. I’ve met amazing women who have become friends and mentors. I’ve sadly had to say goodbye to amazing women, too; I carry them in my heart and advocate in their names.

While I try to find the silver lining in every dark cloud, I’m also a realist: I know I’ll be checking my rearview mirror for ovarian cancer for the rest of my life. Therefore, I continue to promote awareness and advocate for new therapies, which hopefully will one day lead to a cure. I took my fear and transformed it into a brave, confident, empowering force to be reckoned with. I am committed to educating all about the early signs of this cancer and sharing my experiences, hoping it helps another woman who, like me, knew nothing about ovarian cancer.