As an avid sailor and lover of all things nautical, Kathy Heck alongside her husband Eric has learned that living with a diagnosis of ovarian cancer is much like being a sailor, calm seas are sometimes met with rough seas, and adjusting one’s sails is needed to stay afloat.
“I’m pleased to say I just celebrating my 6th plus year cancer-versary of living with ovarian cancer. And I celebrated my 58th birthday in March 2020. My husband and I are avid sailors and refer to our cancer journey as making “sail adjustments”. There have been many sail adjustments over the years, but we always look forward to the smoother seas that are often just past the horizon.
In December 2013, my husband and I were getting ready to live our dream. Throw the dock lines and point our sailboat south and live on our boat. We were in the process of getting our major medical tests completed to make sure we were healthy before we set sail. The last on my list was my annual gynecological visit. Unbeknownst to us, our lives would forever be changed. The tests revealed cancer cells, which sent me to a gynecological oncologist. After many more tests, blood work, and a radical hysterectomy, I was diagnosed with advanced-stage ovarian cancer at age 52. This new world was scary and unknown, but one thing I mentioned right away to my oncologist was that my mom passed away from Breast Cancer. We agreed that BRCA testing was the next step to my prognosis; which resulted in being BRCA negative. This important information has helped on several occasions with my treatment plan. Over the past 6 years, we have learned to adjust our sails and live with this disease. We enjoyed hearing the wonderful word NED after my frontline treatment and we did get to throw those dock lines off and point the bow to the Bahamas, and for 6 months Eric and I lived aboard sailing. But, we have all learned that ovarian cancer is similar to chronic disease and recurrence is often part of our journey. So we returned from the Bahamas and once again back to the chemo lounge. One of my recurrences required an echocardiogram prior to starting new chemotherapy. The echocardiogram test showed that I was born with a heart valve that was stenotic. I was now thrown into two medical worlds. I needed to be on new chemo for the recurrence, but I also needed immediate open-heart surgery to replace the valve. Boy, what a sail adjustment we were facing; but we weathered that storm; open-heart surgery was a success and 5 weeks later I returned to the chemo lounge!
I have learned to actively live with and adjust to the reality that I am living with cancer. Yes, I’ve had many forms of treatment, chemo’s, clinical trials, and PARP inhibitors. But I’ve also learned a lot about myself. I’m much stronger and more determined to enjoy life, I’ve found empowerment and inspiration in volunteering, mentoring fellow teal sisters, and being able to share my voice – it has given more purpose to my already great life. Some of us are scared, some of us struggle to see beyond the treatments, side-effects, and things we might be losing in our lives. When I boarded this ‘boat’ I decided to keep my life afloat by living life to the fullest and fight to remain positive while doing so. We lose control over many things, but we can control our attitude and outlook knowing that each impacts our quality of life and can serve to counterbalance the fears and the doubts of the medical storms. I decided to live with joy, with adventure, and with the hope that the course I charted might help fellow survivors sailing in similar storms, adjust their sails, and head towards Hope. Eric and I have continued to travel and enjoy our time on the water. In addition to bringing our friends and family together annually at the Philadelphia Together in Teal run/walk, I have spoken for the NOCC to medical students annually, took part in focus groups at research companies, hosted fundraisers at the teahouse I own, and secured respite retreats for fellow Survivors. September is important for Teal awareness, and October is especially meaningful to me, as I have honored my mother by taking part in the 3 Day Breast Cancer walk for the past 12 years. My “pink” friends now wear teal for me.
In 2014, when I was diagnosed with ovarian cancer, I never thought the day would come when we had to make the decision to stop all treatments. This past September 2020, after many months of sickness and hospital visits, I knew my body was telling me, adjust your sails once again. ‘Quality of Life’ in our final days has been our best decision. So, I made the decision to enter hospice in September. Our decision was not made by the medical team but our personal team of my family and closest of friends. I hope by showing folks that you can “live on hospice”, it takes the scariness out of hospice. Eric and I recently took a drive to the lake where he had proposed marriage many years ago. And the day after making this difficult decision, over 30 people came to our house as we did our own ‘virtual’ walk for Together in Teal in my neighborhood – using my father’s scooter decked out in teal of course! We are still living with cancer and enjoying our time together. Like my dad, Bob said during his final months, “I’ve lived a great life and when my time comes, I’ll be ready”. No matter when my time comes to say goodbye, I will adjust my sails once again.
Kathy Heck is a member of the Delaware Valley NOCC committee board and recipient of the Zena Cohen Volunteer award. She is the only recipient to receive the award twice.