Date of Diagnosis: July 25, 2016
I am: A lot of things. I am a wife and a mom of four boys aged 8, 6, 4, and 2. I am an attorney and I’ve been doing health policy research for over a decade, and ironically, I’ve written a book on medical malpractice.
The cancer was found when: I was finally able to convince a doctor something was seriously wrong with me. I had been going to doctors for over a year (my ob/gyn and my primary care) complaining of pelvic pain, a lump in my groin, severe constipation, bloating, and at the end, severe and profuse rectal bleeding. I was blown off time and time again by my physicians telling me it was just period pain, or a harmless cyst, or that it was from my pregnancy, and after I had my baby, it was post-partum hormones, or I was just constipated and needed to eat more fiber, and finally, just hemorrhoids from my pregnancy. I even straight out asked a doctor whether she could look me in my eyes and tell me to my face it wasn’t cancer, and she said, “yes, it’s definitely not cancer.” I was diagnosed a few weeks after that. I self-referred to a gastrointestinal doctor who immediately knew something wasn’t right and ordered a colonoscopy. He found a tumor completely blocking my colon. He made the initial diagnosis, but we later found out it wasn’t colon cancer, but ovarian that had metastasized. At that time, I had a newborn at home and I was stage IIIC when diagnosed. I couldn’t even nurse my baby after surgery because I went straight into chemo. If my doctor had listened when I first started complaining, I might have been diagnosed earlier, been able to keep most of my colon, and have a better prognosis. Been able to enjoy being a mom to my last baby. I now have a permanent colostomy and only an estimated few more years to live.
How your donations would impact me: I’m in the midst of my first recurrence. My long term prognosis is poor. I have no genetic mutations, and I will have to rely on innovative new research to help me survive this and be a mom for my four children. Current treatments may be able to keep me stable long enough for another experimental treatment, but it is not clear. Low grade matters, and we need research on this rare subtype as many diagnosed with low grade are young women.
What I’d say to someone else going through this: Seek out an oncologist who specializes in low grade ovarian cancer. Find a good therapist. People will tell you “you’re brave” and “keep up the good fight.” Sometimes it is hard listening to that nonsense. A therapist can help you work through all the complex emotions you’re going through. Support groups are also a great place to crowd source treatments and find support. Have courage, even when you don’t want to.
“keep your face always toward the sunshine and shadows will fall behind you” –Walt Whitman
– Lindsey Kozecke