By Tina S
My journey with ovarian cancer began in January 2010. I had been experiencing mild stomach problems: some bloating and constipation off and on for several weeks. Over the Christmas holidays in 2009 the pain had become unbearable. Still thinking gastric problems were the source, I made an appointment for a colonoscopy. The doctor who performed the procedure said I was “just fine.” He told me to go home and eat more fiber.
I knew something was not right, and my symptoms worsened as the date for my gynecological check-up approached. I could hardly walk into the office as I arrived for my appointment. My abdomen was so bloated I couldn’t wear my clothes. This was only a week after the colonoscopy. My gynecologist knew immediately something was wrong; as she began the exam she suddenly stopped talking and asked if I minded if one of the other doctors on staff came into the room. After several ultrasounds, blood tests, and a CT scan, I was told I needed a hysterectomy as soon as possible.
After a few days the test results arrived. The nurse called me to say I had a high CA 125 count and they were referring me to a gynecological oncologist to discuss surgery. Those 48 hours waiting for the appointment were the longest because I had no idea of what to expect. I searched the web for information, but really had no idea of everything involved. I did not return home after this appointment; I was admitted to the hospital for surgery the next day. I had Stage 3 ovarian cancer and uterine cancer. Chemo began just a few weeks after. By that time I had plenty of information from my gynecological oncologist and understood the plan for treatment; several rounds of intravenous chemotherapy through an IP port.
Chemo was a daily struggle. After recovering from one round, the knowledge that I would have to go through it all again was very difficult. I think the best thing I did was to keep the date of the last round in my mind, posting it visually, and focusing on that. After chemo, I had to learn how to deal with the side effects. I still have neuropathy, fatigue, and “chemo brain,” and now I have been diagnosed with rheumatoid arthritis, which suspiciously set in after chemo.
I have learned to adapt my daily routine to keep an “I can do that” attitude. I am naturally very independent, which has been a struggle. I have had to learn how to let others do things for me that I cannot do myself – big mental adjustment there. In addition, I have had to learn how to accept the lack of physical activity. I have always been very active. My career, my passion, was teaching in the Early Childhood field. I no longer have the mental or physical ability to continue. That is still very difficult to accept. I have a beautiful beach cruiser bicycle that I purchased just months before diagnosis; the girls and I loved riding at the city park. It sits on the porch next to my gazelle, another thing I enjoyed. I have to rinse the dust off of them from our sand road. I do not have the strength to use either. Walking is also difficult due to the neuropathy and rheumatoid arthritis.
I stay busy to keep my mind off cancer. I belong to the quilting club at my church. We make quilts for our soldiers and veterans, create welcome bags for the women’s shelter, and participate in many other projects. Rheumatoid arthritis keeps me from doing much of the quilting, but I can still use my sewing machine and have developed a process that works for me making rag quilts. They are very soft and comforting; babies love them. Sometimes there is nothing better than curling up in a soft quilt.
We have six beautiful daughters. My daughter Robbie was a wonderful help during my treatments. After surgery and during chemo Robbie would get up early to take care of our pets, make her breakfast, pack lunch, and be ready to catch the school bus before 6:00 AM. She always asked if I had taken my meds, and whether I needed juice or milk or maybe some soft scrambled eggs, which was the only thing I could eat at the time. She would text me from school to be sure I was okay. Then in the afternoon she would get laundry done, fix supper, care for the pets again, and somehow find time to get her school work done and make the honor roll. I am not sure if I would have been able to get through all of this without her. The other members of my family were wonderful and a great support, but Robbie is the one who got me to the end of the day.
The most important thing that helps me to get through all of this is the fact that I never give up. I always keep trying and have learned how to “make lemons into lemonade,” or rather my preference, to “make scraps into quilts.” Stay busy in whatever you enjoy to the extent you can is the advice I give to anyone in this position.
Although I am grateful for the treatment I received and appreciate everyone involved, thanks to The Clearity Foundation I now know I received the standard, non-personalized treatment for women with my type of cancer. I still wonder if I had known about Clearity and had molecular profiling prior to the chemo, whether the treatment plan would have been different. Would it have been set up just for me and my type of tumor, rather than something that worked before on someone else?
I have comfort in knowing that I have my blueprint from The Clearity Foundation. If the cancer returns my doctor will have a medical arsenal designed just for me and my type of cancer. I want to fight this cancer with all of my might. I never give up and I am not about to start now! I want to share my story, even if it can help just one woman.