My story is much like any ovarian cancer survivor, with opaque symptoms that I attributed to other things. Sure, I was bloated and my abdomen was getting larger, but I had just gone through menopause and isn’t that what happens? Sure, I had lower back pain, but I’m gaining weight and wasn’t it to be expected? Sure, I was hot all the time, but maybe I just need hormone replacement.
Believe it or not, it was the least obvious symptom that drove me to call my doctor – being hot all the time. Going into my general practitioner I thought I would walk out with some form of hormone replacement, but instead, I had an appointment for a vaginal ultrasound.
We talked about my symptoms and she did an exam. While she was feeling my abdomen I will never forget her turning her head to me and saying, “I feel something, it could be ovarian cancer.” Of course, I was scared, but thought it couldn’t be possible; there wasn’t any history of any cancer in my family. The reality was, however, in the back of my mind I knew something was wrong; I felt it.
So a week later I was having the pelvic sonogram. I had had sonograms with both of my children and for a previous cyst, but this time it seemed to take a long time. The technician was taking a lot of pictures and doing a lot of measuring. I knew this was not good. The very same afternoon my doctor called to tell me she thought I had ovarian cancer, but more tests were needed.
I immediately called my husband, too shocked to even cry, and went into my doctor’s office to have a full blood panel and CA-125 test done. The next day I was in for a CT scan which further confirmed the diagnosis and three days later had a PET scan done. One week after my ultrasound I was in the gynecologic oncologist’s office.
The PET scan confirmed that it was most likely cancer, but my gynecologic oncologist said we wouldn’t know for sure until after surgery. The doctor started to ask if I wanted to just remove the ovaries, if possible, or have a full hysterectomy, but before he could finish I said, “Take it all!” I didn’t want any possibility to have cancer anywhere after the surgery. I told him that if I don’t need it to live, take it. He is known for being an aggressive surgeon which was a perfect fit for me since I wanted to attack this disease with everything possible. A mere three weeks after my initial diagnosis I was having surgery.
Surgery was scheduled for May 2012, and I was eager to have it done. I wanted this unwelcome enemy out of my body so I could do what was next to attack this cancer head-on. Heading into surgery I was nervous, but the doctor was very reassuring and having my husband there with me, holding my hand, made me much calmer than I would have been otherwise.
The surgery was successful, and when I woke up my husband said they were able to get it all out. There were tumors on both ovaries, the omentum, in the pelvis and a resection of my colon was necessary as one of the tumors on the ovary was lying on the colon. I was staged at 3B. Relief washed over me as I found out that the lymph nodes were not involved and were clean.
The next five days in the hospital were tough and recovery was not easy. Nurses encouraged me to walk every day and I did, with their help, even though it was the last thing I felt like doing. I will never forget going for my first walk with the nurse after surgery and seeing the sign “Oncology Unit” on the wall. I thought they had placed me on the wrong floor and it hit me hard when I realized that I was right where I belonged. It was at that moment that I first came to grips that I have cancer.
The next month is a bit of a blur recovering from surgery (the hardest part being the colon resection), post-op appointment, chemo class, PET scan, and surgery to have a port put in to receive chemo. Then, the last Friday in June was my first chemotherapy of Taxol and Carboplatin. I was so nervous but ready to begin attacking any possible lurking cancer cells. The first week after chemo was always the toughest with side effects of horrible aches and extreme fatigue. My bowels didn’t work properly for a few months and it was truly the hardest part of the recovery. With each chemo it was harder and harder to bounce back, but the worst of it never lasted more than a week.
After six treatments of chemo my PET scan showed no evidence of disease. I was thrilled but also anxious about what came next. My safety blanket – chemo – was gone and now I felt like cancer was free to just come roaring back. After meeting my gynecologic oncologist’s physician’s assistant, I decided I would try maintenance chemo and Avastin in hopes that if there were any lingering microscopic cells that we would get them all. Beginning in January 2013, I started getting Taxol and Avastin once a month and received a total of 12 treatments of Taxol and Avastin with an additional 12 treatments of Avastin only.
I enjoyed over two years of being NED (no evidence of disease) before my CA-125 began to rise in the fall of 2016. Since my CA-125 was a good indicator for me, I knew it was back – and a CT scan later showed it. Since my son who lived in Japan at the time was making a trip back to the United States, I chose to wait until February 2017 to begin treatment so I could enjoy time with him. Then in February 2017, I started another series of six Taxol/Carboplatin. I became allergic to Carboplatin on my third treatment so from then on, I had to have my treatments through a desensitization protocol at the hospital, which meant spending the night. After the six treatments, I was NED again and off to live my life, being monitored every three months.
Again, after about two years of being NED, my CA-125 began to rise again, and sure enough, a CT scan showed it was back. So in March 2019, I started a regimen of Doxil/Carboplatin – once again in the hospital for the Carboplatin desensitization. I made it through 5 treatments before the treatment itself became too toxic for me. I still had two small tumors showing on my CT scan. We stopped the treatment and I went on the PARP inhibitor, Lynparza, in hopes that it would keep the cancer stable and I could go on enjoying my life. This treatment worked for a year and a half before the cancer started to grow – still just the two tumors showing. In February 2021, my oncologist did surgery to remove the tumors in hopes that I could then go on with just the PARP inhibitor.
But in July 2021, my CA125 doubled and a CT scan showed new growth, albeit only 6 small tumors sized 3mm-11mm. Back to chemo I go. That leads me to today, August 2021 where I have just finished my first round of single agent Carboplatin in the hospital. We are doing a single agent in hopes that it kills the cancer once again, but also gives me a better quality of life while being in treatment. And quality of life is so important.
Without a doubt, one of the best things I did is attend a MOCA support meeting. I met other women and found a sisterhood of women who are the only ones who can truly understand what I am going through. After one of the MOCA support group meetings, a few of us survivors decided we wanted to get together again soon and we met for coffee a couple of weeks later. We enjoyed our time spent together so much that we decided we would do get-togethers every month; and in January 2013, Chemo Chicks (aka the Chicks) was born. We have since grown into a group of over 30 women from all walks of life, in all stages of the cancer journey, but we have one thing in common (okay, two if you count ovarian cancer) – we love to laugh and have fun.
And one of our biggest missions is to support MOCA any way we can – through raising money at the HOM Teal Strides for Ovarian Cancer Walk/Run, having an annual rummage sale with proceeds going to support MOCA, raising awareness and mentoring other cancer survivors. We owe a lot to MOCA!
Things I have learned through my ovarian cancer journey:
- I am stronger than I ever thought
- It’s okay to have a pity party – but only 5 minutes a day
- Finding other survivors has made the world of difference to my emotional health and attitude
- My husband never ceases to amaze me and has been by my side every step of the way, through the good, the bad and the very ugly
The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions.