RAIDHO
I’m of Scandinavian heritage and I’ve always been fascinated by old Norse mythology and the old alphabet called runes. When I was diagnosed with cancer I adopted the Norse rune “Raidho” as my personal symbol and the phrase “we can’t always choose our journey . . . . but we can choose how we travel it” as my life philosophy.
My life journey has involved lots of opportunities to put that viewpoint to the test. I come from a family with a long history of cancer – prostate cancer, lung cancer, brain cancer and most especially breast cancer. My mother died in 1990 of breast cancer at the age of 46. Her mother had breast cancer, her mother’s mother and her first cousin.
When my mom died her oncologist told us that they believed that there was a hereditary aspect to the disease. Mayo Clinic (where I live in Minnesota) was conducting research to see if having a preventative surgery would reduce the risk of breast cancer for women like me with strong family history. So, I chose to have a preventative mastectomy in 1993 at the age of 30. Although it was a difficult surgery, I felt good about my decision . . . I was grateful that scientific advances had made it possible for me to potentially avoid the breast cancer legacy in my family.
Fast forward to the fall of 2010 . . . when at the age of 47 my world was turned upside down by the shocking diagnosis of advanced ovarian cancer.
I knew absolutely nothing about ovarian cancer and my initial consultations with “Dr. Google” were not real encouraging. So, I decided that a clinical trial which compared IV to IP treatments and added Avastin as a maintenance treatment offered me an opportunity to benefit from the most recent science/research. At the end of my chemo I celebrated hearing the words “No evidence of disease” and I had 3.5 years of getting back to living my life.
Of course, this sneaky disease decided it wasn’t done with me yet and it made its presence known again in the fall of 2014. This time I didn’t go into a complete remission after chemo which was definitely NOT the outcome I would have chosen! Even so I remained hopeful because through my involvement with ovarian cancer advocacy groups I knew of the research progress that had been made in this new class of targeted agents called PARP inhibitors.
They weren’t available for me as standard treatment, but I was able to get access to one of them through a clinical trial. I had to fly every 4 weeks from Minneapolis to San Francisco, but it was worth it as it kept my disease from progressing for another 3 years! Three years of an incredible gift of living life well ~ traveling to places in the world I have always wanted to see ~ the opportunity to be involved in patient advocacy efforts on behalf of our teal community ~ and most importantly time to just be a part of the everyday lives of my family and friends.
Now I would love to be able to stop the story of my journey right there but as the old Rolling Stones song goes “You can’t always get what you want.” Just a couple of months ago I found out that my cancer was not responding any more to the PARP inhibitor and I started back on a chemotherapy regime. Yet I’m still choosing to be hopeful. I’ve already benefited so much from our research efforts . . . and I’m confident there is still more progress to come. I’m looking to what’s next on the “research horizon” for me.
Don’t get me wrong ~ having ovarian cancer stinks ~ and the multiple surgeries and chemotherapy treatments over the last 8 years have left lasting side effects that are sometimes hard to deal with. But life is still good and there are many adventures yet to be had!
I did not get to choose whether I wanted to be on this teal journey, but I can choose HOW I travel it. I refuse to live in fear of the “what-if’s” and the anxiety of asking “what’s next” and instead continue choose to live each day with joy and appreciation and hope. ~ Raidho~
Globe-athon is proud to partner with Smart Patients, an online community where patients learn from each other about their cancer journeys. On Smart Patients, you can discuss issues raised in this blog post and beyond. Join here: https://www.
