Carmen’s Story
Age at diagnosis: 52 years old
Stage at diagnosis: Stage IIIc
Story updated: July 2010
I celebrated my 10th year as an ovarian cancer survivor in October 2009 at the age of 62.
At the time I was diagnosed, I had been an avid runner for a long time and had gotten used to running through pain. It was easy for me to play the “mind over matter” game. Was that the beginning of my demise with cancer?
I had been having intermittent abdominal pain for at least a year – one of the classic symptoms of ovarian cancer. The Mylanta that my primary physician suggested for the abdominal pain didn’t bring relief.
I had other ovca symptoms during that troublesome year as well. Most frustrating was my ever-increasing girth. I just kept getting bigger and bigger until all I could wear comfortably were elastic waist-banded pants. I was experiencing fatigue, bowel issues, and eventually discomfort during intercourse.
I think that over time, both my doctor and I thought my issues were hormonal and age related. My annual physical exam took place in the fall of 1999. I didn’t want to be perceived as a hypochondriac, but the intermittent abdominal pain was addressed again. My doctor ordered an ultrasound for the following week.
The test was postponed for two weeks because I was called for jury duty. However, after several days that first week, the pain was relentless. Fortunately I was able to see the doctor without delay. After another pelvic (having had one just the week before), she suggested that I have a CT scan immediately.
After the CT, a medical staff told me that I had “a large mass and ovarian cancer was suspected.” Cancer? I had no family history of cancer. My life was quickly spinning out of control. I was alone when given the shocking news and I sat there in numbness and disbelief – trying to decide how I’d break the news to my husband and adult children.
I have a strong faith, and it was important to me that other like-minded people would be active in prayer for me and my family. We were embarking on an unwanted, unknown and frightening journey. A quick phone call to a friend began the support that I knew we’d need.
I was immediately transitioned from my primary physician to a gynecologic oncologist, vital to anyone diagnosed with this disease. My medical team was a gift from God. There was no time to research doctors. There would be no “picking and choosing.” And still without that, I believe I got one of the best. I’ve never discounted what my gyn-onc has done for me, nor will I be disappointed in what I know he cannot do. His professional care translated through to the rest of his medical staff. I’ve been so grateful for all of them.
Epithelial, stage IIIc ovarian cancer was confirmed. After a hysterectomy and debulking, I had eight rounds of taxol and carboplatin.
The typical side effects of the drugs were mostly minimal (nausea, neuropathy, fatigue). However, I wasn’t prepared for the itchy and painful rash that spread over my scalp when my hair was gone. I mourned the loss of my hair, and baldness became the visible sign of the disease. The severe constipation (a result of the drugs that were taken to combat the side effects of the treatment) was difficult to deal with as well.
At diagnosis in 1999, my CA-125 was over 3,000. It dropped to 450 after surgery and continued to drop during treatment, settling at 3-5 for almost three years. Things were going well – but then I glimpsed another storm brewing on the horizon, as my CA-125 started to creep up slightly in January of 2002. I was to have my port removed at that time but I decided against it, keeping a close watch for any other “changes.”
The CA-125, a controversial tool, is not always accurate, but for me it’s been a good marker. By summer of 2002, the tumor marker was in the 40s. I got a second opinion and a PET scan; “No significant findings.” Then ovca recurred in October 2002 – this time in my liver. There was no surgery, and we repeated chemo with six rounds of taxol only. I had the same scalp problem and eventually learned how to manage the constipation. My CA-125 has been 5-7 since my last treatment in 2003.
My only remaining “reminder” of the disease is the lymphedema I developed in my right leg, something I didn’t expect at all. I wish I’d been cautioned, as breast cancer survivors are warned that this could happen to their arms post surgery.
With most challenges in life, we’re given the opportunity to make choices. I made the choice to create a “new normal.” I could no longer run, so I began extensive walking. And in recent years I’ve added lap swimming to my fitness routine.
Life is a gift and I’m grateful for the added years to my life since 1999. I try to maximize each day. Part of the maximizing is culling as much negative from my life as possible – making decisions with thoughtful intention, and “giving back” through volunteer efforts with MOCA. Through the partnership MOCA has with the University of Minnesota, I’m able to present my story and give ovarian cancer a “face” to students in its medical program.
I’m so thankful for the doctors and researchers who spend their lives looking for an ovca cure. Yet I want to encourage other survivors to dig deep and find inner tools that can be the catalyst for creating new possibilities for themselves despite the disease. Being a resource for other ovca survivors by offering help and hope has added joy to my life.