Survivor Stories — Dorinda (Dee) Sparacio
After working as an engineer, college program coordinator, and computer teacher, I never thought that I would start another new “career,” but that is exactly the direction I have taken. I have cancer to thank for my new career as an ovarian cancer advocate.
In 2005, one month after my 50th birthday, I was diagnosed with ovarian cancer.
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One week before my annual gynecology visit, I began to experience pain near my left hip. I mentioned this to my gynecologist, so she sent me for a transvaginal ultrasound and a pelvic ultrasound. One day after having those tests, I went to the emergency room in severe pain. Unsure of exactly what was happening, the ER doctor contacted my radiologist and my gynecologist and scheduled an MRI for the next day.
By the time I went to my gynecologist for a follow-up appointment to find out what the MRI had shown, she had made me an appointment to see a gynecologist-oncologist at The Cancer Institute of New Jersey (CINJ). She told me at the follow up that the MRI showed I had enlarged ovaries.
Dr. Rodriguez at CINJ scheduled me for a hysterectomy. After the surgery I remember looking up at the clock and then looking at Dr. Rodriguez as she stood over me in the recovery room. I knew the surgery had taken much longer than first expected. I found out that, in addition to a hysterectomy, I had had an oopherectomy (removal of the ovaries), and debulking surgery. I also knew that I wasn’t going to hear that “everything was okay.” Instead, Dr. Rodriguez said, “You have stage three ovarian cancer.”
One week after surgery I had a port-a-cath implanted and began chemotherapy a week later.
In addition to traditional chemotherapy treatment, I was offered a phase I clinical trial, which added Selenium to Carboplatin and Taxol. I was, at first, unsure of the alternate treatment, but with help from the CINJ librarian, I researched the use of Selenium in the treatment of cancers and, in particular, ovarian cancer. I found that there was no harm in trying treatment that included this mineral along with chemotherapy. I learned that there might even be benefits down the line, like making my tumors less chemotherapy-resistant.
I decided to take part in the clinical trial even though that meant enduring another full day of treatment every three weeks. My treatment schedule included a Selenium infusion and blood tests on Monday, and Carboplatin and Taxol on Wednesday.
During treatment, I lost my hair and my energy and found all the food I ate tasted the same. I spent many days feeling so fatigued that I never left my bed. Eventually, I learned to deal with the fatigue knowing three days after my chemotherapy treatment my energy would begin to return. I turned to an online support group, the Association of Cancer Online Resources because I didn’t have the energy to travel any great distance for group meetings. Before I got sick, I routinely walked two miles for exercise. During treatment, however, I celebrated if I could walk from my house to the corner of my street!
When I finished treatment in 2006, I began attending the Gynecological Cancer Networking group at The Wellness Community of Central New Jersey. After attending the LIVESTRONG Survivors Summit in Austin, Texas in late 2006, I contacted my gynecological oncologist, Dr. Gibbon, and the Social Work department at CINJ about starting a gynecological cancer support group. In May 2007 we had our first meeting and the group remains one of the most well attended groups at the Institute.
In December 2007 I started a blog called Women of Teal because I had a hard time finding valuable information on ovarian cancer when I was first diagnosed. Through Women of Teal I share resources with other women in New Jersey and share my journey with the disease. Women of Teal also allows me to keep my family updated on my progress.
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When I finished my treatment in 2006 I started a follow-up plan that included seeing my gynecologist-oncologist and having a CT scan on a regular basis. In October of 2008, a few days after I had a CT scan, I received a call from my doctor and she said they saw tumors on my liver and spleen. The cancer had returned!
What to do now? I had a few options: Since it had been two-and-a-half years since my chemotherapy treatment, I knew I could use a platinum drug again. I was offered surgery, then chemo; chemo, then surgery, or a clinical trial in which I would be randomly selected to have surgery or not, and then undergo chemotherapy with Carboplatin, Taxol, and Avastin. After meeting with the surgical oncologist at CINJ, I decided to undergo surgery first. In November 2008, I had a liver resection and a spleenectomy. All of the visible cancer was removed.
In January 2009, I once again started chemotherapy with Carboplatin and Taxol. During my second cycle I had a very severe allergic reaction to the Carboplatin. I then finished the remaining four cycles with Taxol only. In April 2009, I finished chemotherapy and once again had no evidence of disease (NED).
Cancer has taught me a great deal in the past several years. It has taught me about clinical trials, how to read medical journals, how to ask questions of my nurses and doctors, how to understand insurance bills, and how to ask for help. It also has made me passionate about my new career as an advocate for cancer survivors.