When the road ahead is unclear due to cancer, the best thing you can do is look for a new road to offer hope, a cancer survivor explains.
In my last piece written for CURE®, I had a postscript that my numbers jumped six points, so now the fight against my ovarian cancer continues. But, where to now? What are we going to do now? What is the unknown?
I have had three major surgeries, four rounds of chemotherapy, two bouts of radiation and CT and PET scans beyond what I and remember. My last scan showed a cyst on my kidney. Oh yes, now I need to add ultrasounds! While we were not able to distinctively determine what the cyst was, we must assume that there is a great possibility of it being cancer, so a new round of chemotherapy was ordered.
While I am not a medical doctor, I am a patient that has learned so much about my condition. Yet, there is so much more to learn. I have learned that I need to ask questions. I need to be an advocate for myself. I have family and friends who have come to doctor visits with me as second pair of ears to hear something that I may miss. They have even asked questions for me.
When I was diagnosed with something in my body that was not right, I was immediately sent to the surgeon. He operated on me and then, because it was a cancer diagnosis, I was assigned an oncologist. You hope as a patient that you get the best of the best as you need a physician to fight like hell for you to get well. You do not want to be a number on a piece of paper. You want to be able to feel comfortable to be your own advocate and ask questions to your oncologist.
I was blessed to have that immediately with my oncologist. She is brilliant and treats me like a person who she cares deeply about. I have never felt like a number with her. She was open to all possibilities, including another hospital with physicians who were willing to work together with her. I am not a number to her!
I have learned in my cancer journey there are certain protocols that are followed with ovarian cancer. Surgery and chemotherapy were my first treatments. However, after the chemo was done, my CA125 numbers started to rise only a year and a half after my surgery, and I was back at the doctor’s office. There was still a hidden tumor that was missed. Hindsight is 2020 and if I knew what I know now, I would have asked to have a scan before the surgery to check for other hot spots that might be hidden. I had hyperthermic intraperitoneal chemotherapy (HIPEC) during the second surgery, which is heated chemotherapy – and again back on chemo.
I had a period of excellent numbers and no recurrence for about three years and then the cancer started to show up in my lymph nodes. I had surgery (nine plus hours), and HIPEC was done during surgery, and another round of chemo was ordered. I also went on a maintenance drug and that kept the cancer at bay for about 2 years. Then the numbers went up again. More lymph nodes were hot, so radiation was the call. Those nodes were eradicated, but new ones popped up. I had more radiation followed by my fourth round of chemo. Let us add COVID-19 to the equation during that scary time, and it was very challenging. I finished the chemo and had a month of reprieve.
This is where I am today. I am on an unknown path as I have had so many kinds of treatments, so where do I go now? At my last appointment with my oncologist, she spent so much time with me as I had a million questions. I was seeking any alternatives to my treatment. So, she suggested that we try The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James) as they have a “robust program” (her words) for trials or immunotherapy. I am so excited to have yet a new set of eyes looking at ovarian cancer. My appointment is in November, and I am so thrilled to have this chance in Columbus.
When you look at me I do not look sick. In fact, I am actually healthy. Other than my back which hurts when I work hard in the yard or lift something too heavy, I feel good. My last scan showed that my back is a 68-year-old back with some typical aging ailments. I was thrilled to hear this as with every new ache and pain, you always gravitate to the worst-case scenario.
As we look forward to the hustle and bustle of the next couple of months with Thanksgiving and Christmas, I remind myself that every day is a gift. I have been focusing on projects at home to keep busy. I am making some handmade Christmas gifts. I am sorting and pitching things that needed to be pitched years ago. I feel this new path will continue to give me hope to get back in remission. Whatever the outcomes, I will celebrate what I have now and continue to make plans for the future.
I have this plaque in my house in two places. “Work like you don’t need the money. Love like you’ve never been hurt. Dance as though no one is watching.” I am doing just that.
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