My story started innocently enough in September 2006, with a “Honey, do you think I should get this checked?”. I had just turned 40 and was in the middle of re-roofing my house, so I had no time for medical concerns! “Yes, I think you should get it checked…like now!” was my partner’s reply. I had found two odd but painless lumps while trying to massage out some menstrual cramps, and the lumps weren’t going away. So, down the ladder and off to the doctor I went for an urgent care visit. That led to a CT scan the same day, and being told I had what was probably a large ovarian cyst. I left radiology with an appointment to see a GYN two days later.
The GYN visit resulted in a surgery date in late October for a hysterectomy/removal of my right ovary. I was fine with that – finally no more cramps! By mid-September, things were getting pretty uncomfortable as the cyst continued to grow. By the time I reached my surgery date, it was about the size of a softball. (Note – the roof was finished the day before the surgery!). Surgery went smoothly, other than the part where the cyst was on my left ovary, not my right! Apparently it was big enough that they couldn’t tell where it originated. The lumps I was feeling were actually fibroids that were being pushed to the side by the cyst. There was no mention of cancer, and none was suspected. But, as the radio commercials say, the story doesn’t end there.
Mid-November, I still hadn’t gotten the all-clear from my GYN, which I assumed was a formality. November 14th, I finally got the call. The reason it had taken so long was that my pathology was being reviewed and re-reviewed. In one conversation, I went from a routine GYN case to being a cancer patient. I was diagnosed with a “well-differentiated mucinous adenocarcinoma of the left ovary”, which isn’t that bad as cancers go. My CA-125 was elevated, but only mildly. The cancer appeared to be contained within the cyst, but meant that the other ovary, my appendix and my omentum were coming out sooner rather than later. So, five weeks after my first major surgery, I had a second one. The good news was that I was diagnosed as Stage 1. The bad news was that they also found a carcinoid tumor on my appendix. I learned that mucinous ovarian cancers are a low percentage (less than 5%) of the ovarian cancer diagnoses – most are serous ovarian cancers. This becomes significant for me because mucinous cancer cells are similar to GI/intestinal cells. I am now at higher risk for both breast cancer and the GI tract cancers (appendix, colon, etc.). The other bad news was that the “abdominal washings” showed abnormal cells, meaning there was likely some spillage during the first surgery, and things were now not as clear-cut as they had been.
I was scheduled for an “insurance policy” chemo regimen of Taxol and Carboplatin, four rounds instead of six. I did not tolerate the Taxol well, and was switched to Taxotere after two treaments. This unfortunately went even less well, but I did manage to complete the treatment. I lost all my hair, which I was lucky to find more amusing than traumatic. I had been threatening to shave my head for years, but had been afraid to, so this way I had no choice! Even more interesting was that my hair started to fall out the day that Britney Spears shaved her head, so of course I told everyone she was just trying to look like me…
I’ve been going back for my follow-ups every 4 months, and so far the tests and scans are coming back clear. Because of the appendix and some family history, I am also on the every-year colonoscopy plan. Not a barrel of laughs, but I try to look at it as a guaranteed day off and a really good nap! They really should have a frequent flyer program – maybe for every five colonoscopies, you get a free upper endoscopy! As you can see, my sense of humor has been a crucial survival tool through this.
I sure have a lot more medical history now than I had two years ago. I’m going to PT every week for residual leg pain, too. Still, in many ways I was very lucky. Through all of it, I was also sole caregiver for a mother with dementia. She passed away in August 2007, but she got to see me getting my hair back and looking healthier before she died. For that, I feel truly blessed. Since my diagnosis, two co-workers have been directly affected by breast cancer and one friend by ovarian cancer. I’m doing my best to show them the same friendship and support that I received during my ordeal. It’s a tough thing to be sick, but friends and family do make it a lot easier.
In many ways I am the same person, in other ways I am not. I take things a little more slowly. I’ve taken the initiative and done some of the “someday” things I always dreamed about. I traveled to LA to get into The Price is Right before Bob Barker retired. I’ve visited elderly friends I hadn’t seen in years. I got another tattoo. I have hot flashes.
I rented The Bucket List, even if it was hard to watch emotionally. I always used to see the bumper sticker “Don’t Postpone Joy”, but it didn’t sink in. I think now I get it!
If you are an ovarian cancer survivor and would like to share your story with others please email us at sistersagainstoc [at] gmail [dot] com.