Kathleen Maxian defines moxie on many levels. The 52-year-old has lived with ovarian cancer for more than five years. She is president of Western New York Ovarian Cancer Project, a group she helped found in 2012. And she played a pivotal role in the 2013 U.S. Supreme Court decision against a biotech firm that illegally held a patent on a human gene.
The case involved Myriad Genetics, the firm that codeveloped a test used to detect DNA mutations known to influence the risk of breast, ovarian and other cancers. Maxian – who was genetically predisposed – did not have that test, and she was subsequently diagnosed with advanced stage ovarian cancer. By sharing her story, by showing how gene patents affect people, Maxian played a pivotal role in the high court’s final decision.
As one of 22,000 women in the United States who are diagnosed each year with ovarian cancer, Maxian is committed to increasing the level of services, support and education available to women living with the disease.
Maxian was born and raised in Lewiston. She and her husband Thomas Maxian will be married 11 years in February. They live in Pendleton.
People Talk: Did you know you had this stockpile of inner fortitude?
Kathleen Maxian: No, but I feel very comfortable doing this work. Healthwise, I had been very lucky. I worked out, played sports. I was a very active woman.
PT: What were your symptoms?
KM: I didn’t know they were symptoms. They were vague and they mimic other things. I was constipated, but women get constipated. I was bloated. I had a terrible pain in my side at one point and then it went away. I thought I had twisted a muscle. I was fatigued, but I thought I just needed more exercise. I never thought that I could be at risk for ovarian cancer. I was diagnosed in August 2009. I didn’t meet another woman surviving ovarian cancer for one year. It was traumatic and disturbing to me because it made me think no one lives.
PT: Were you predisposed?
KM: Yes. My genetic mutation is the BRCA1, which is also the breast cancer gene. It’s from my dad’s side of the family. Having that genetic mutation doesn’t mean you’ll get cancer. My dad’s 84, and he still goes to work. I was told that I had a 20 percent chance of living for five years. I’ve had two recurrences. I’ve had treatment at Roswell and Memorial Sloan Kettering in New York. I am now in my longest remission ever – 17 months is a big thing.
PT: Why did you see the need for Western New York Ovarian Cancer Project?
KM: So there I was newly diagnosed. I’m on the laptop looking for support groups and what I’m finding is old websites, women who had started something and then died. We want to make sure women know what the symptoms are. Doctors may think it’s irritable bowel syndrome. I know several women who had their gall bladder out six months before they were diagnosed with ovarian cancer. Or they’re told they’re just going through menopause. Ovarian cancer needs to be ruled out sooner so women are diagnosed earlier.
PT: What effect does a serious illness like cancer have on a marriage?
KM: Some husbands leave, but I will tell you that my marriage prior to having ovarian cancer was a good marriage. My marriage after cancer is a great marriage. There are things my husband and I have been through that a lot of relationships don’t withstand. My care is a huge undertaking.
PT: How do you pamper yourself?
KM: Here’s my thing after a good test: I call my husband. I call my mom and dad. Then I go buy something at Lord & Taylor. The watch is something I bought for myself after a good PET scan. One of the first things I bought was a red designer purse after a clear scan. I get a facial every single month. I get a massage. This year I started taking a watercolor class. I’m carving out time for myself.
PT: How do you see the future?
KM: Three months at a time – from test to test. My checkups are every three months. I have blood work that shows if the cancer is back. I just had a full body PET scan last week. Having cancer is scary. I don’t make travel plans more than three months in advance.
PT: When is the last time you had chemo?
KM: June 2013. Chemo is brutal. We’ve got to do something different than this systemic chemo. Our treatment for ovarian cancer has not changed in 40 years. The surgery worked for me. It got out all the big cancer, and then my cancer came back 14 months later in a lymph node. And I did six months more of big-gun systemic.