You are your best advocate
I was diagnosed with stage 3 ovarian cancer in 2016 at the age of 49. I really didn't have any specific symptoms other than a little lack of energy and intermittent digestive issues. I went to several doctors with these complaints and received little help for my vague symptoms. One doctor even prescribed me a hefty dose of antidepressants and told me to come back in a month. I knew my body. I was an avid runner and cyclist. I took care of myself, ate well and was in tune with what my body was trying to tell me but I couldn't find anyone who would listen. It was only by chance at my annual pap smear that there were some suspicious cells and my doctor recommended a hysterectomy. When she got inside during surgery she discovered I had a much bigger problem than was anticipated. She patched me back up and sent me to our local medical university hospital for hysterectomy attempt number two. The surgery went well and I was released from the hospital Christmas Eve 2016. My daughter put her life and first year of law school on hold to come home and help care for me. My son tried to keep focused on his senior year of high school. My husband who I have been with since I was 17 was home as often as he could be. Unfortunately his job requires extensive travel for long periods so I really did have to rely heavily on the help of my children. My daughter even had to learn how to give me daily shots. Let's just say she should avoid a career in medicine although she tried awfully hard to only stick once.
I recovered from the surgery with the help of my family. I then went on to have six rounds of chemotherapy. I responded well and at the end there was no sign of disease. I spent the next 8 months trying to regain my strength and grow back my hair. I grew curls for the first time in my life. Beautiful bouncy flirty curls. I loved them. I joined a clinical trial with Niraprib and continued with endless hospital scans and blood tests. Unfortunately the cancer returned and I was given six more rounds of chemotherapy. This time the chemotherapy wasn’t as effective.
Both of my children had tried to move on with their lives and moved to another city. My daughter found a wonderful job and put her law school dreams on hold for the time being. Instead she started a MBA program that she could complete while working full time. My son enrolled in college and began his journey into adulthood. I was faced with a dilemma. Because of the travel requirements of my husband's job I was living alone most of the time. I was lonely and needed support so as a family we decided it would be best if I moved closer to the children. We found a small house and I moved in with my adult son and daughter. Not the ideal situation for them but we make it work. I started another six rounds of chemotherapy and fortunately had a good response. I was put on a maintenance drug called Avastin with the goal of making it one year without a recurrence.
I started back at the gym, lost a little of the chemo weight, grew a glorious head of hair and began to enjoy feeling like my old self. I made it one year and one month then my CA-125 levels started to spike again. I am currently on round four of six in my latest chemotherapy journey. The hope is that the chemotherapy will once again knock back the cancer and I can go on a new maintenance drug for a while. I am still living with my children and my husband is still traveling. Covid has made this situation very difficult. He can’t just pop home between jobs anymore. I am at risk and he is having to do risky things so our relationship has had to adjust to nightly phone calls of love and support. Not exactly the walking on the beach holding hands scenario we envisioned for this stage of our lives but we make it work.
I am thankful to have a family who are supportive. I am thankful that we have decent insurance. Although the burden of $10,000+ out of pocket every year I live with this disease Is criminal in my opinion. I am thankful that my husband is able to support us with a good and stable job. I am thankful to have the support of friends and family. I am thankful I have some more time to spend with them. I am sad that covid makes this nearly impossible. September is ovarian cancer awareness month. I am sharing a little bit of my ovarian cancer story with you to try to bring awareness about ovarian cancer.