It was July 2005, and I was doing my frequent at home exercise workout, when I felt like I was sitting on a marble or a stone. "This is odd," I thought, and so discovering a small hard lump on my tailbone, I began my diagnosis journey. After a month of visiting three different surgeons and having a few tests, my situation was still unclear, so I was sent to the Mayo Clinic in Rochester, Minnesota. There, I met two exceptional orthopedic surgeons who identified my sacral chordoma. I was the twenty-sixth chordoma patient seen there to date. It was frightening to be told that I had a rare, one-in-a-million type of cancer.
The Chordoma Foundation did not exist then.
November 10, 2005, three months after I received my diagnosis, I had my surgery. It was difficult going back into the classroom and teaching during those three months. The waiting was very difficult. It was an emotionally challenging and lonely time. After an eleven day hospital stay and three month recovery period at home. I returned to my teaching job, a bit too soon, but I wanted to be in charge, not the cancer. My husband, Bill, took over the cooking, laundry and cleaning along with giving me much tender loving care and I completed that school year.
My husband and I attended the second Chordoma Community Conference held in Bethesda, Maryland in 2008. There we met uncommon people like me! We learned and understood so much more about chordoma cancer and its treatment. I became a Peer Guide for several years. I raised funds for the Chordoma Foundation by raffling off quilts I made at an annual community festival and shared information about chordoma cancer for a few years. We also attended the Chordoma Community Conference at Mayo Clinic in October 2016. Again, we learned a lot from the speakers and appreciated connecting with other chordoma patients and families. I know that the Chordoma Foundation is a godsend for newly diagnosed chordoma patients and their families helping them to navigate through their new uncommon journey.
At the time of my diagnosis, I had no idea what my future held. Today, I feel incredibly blessed to be an 18 year survivor. I am thankful for every day and try to make the most of each one. I have had no recurrence of that cancer. There have been challenges and ups and downs related to the effects of my surgery, but I took control of my body and my “attitude.” I have focused on what I can do and not what I cannot do. The hoped for traveling to national parks around the US after retirement didn’t happen, the bike riding stopped, but I walk, hike, kayak (with my trusty cushion), swim (with the grandchildren) and snowshoe. We try to make adaptations to make things happen. With my husband’s nudging, I push myself as far as I can to embrace the gift of life I have.
Since my surgery (at age 56), I have witnessed my youngest child’s college and medical school graduations, two weddings, and the birth of four of my six grandchildren now ranging in age from 2-25 years of age. I have been incredibly blessed and I am hopeful to have more time with my wonderful family. I take time every day to “be present” in the natural world around me, which brings me much peace.
