A year and a half ago, I went in for a routine colonoscopy. I had absolutely no symptoms and had delayed the test by two years because of COVID. My nightmare started in the recovery room when my surgeon told me she was pretty sure I had rectal cancer, but we would wait to see what the biopsy showed. That began a series of being shuffled between doctors and specialists, and various diagnoses after the biopsy came back benign. I felt like a time bomb, ticking away as I was shuffled between doctors and waiting for appointments for diagnostics and appointment scheduling. I finally called the Cleveland Clinic Cancer Center and that phone call changed my life and recovery. They determined I had a peritoneal tumor that was pressing into the rectal wall but luckily didn’t penetrate it. My wonderful oncologist and her team had a plan. After a debulking surgery that removed the tumor, resected the rectum, and removed my ovaries (which were clear), I started my course of six rounds of chemotherapy.
This wasn’t my first experience with cancer. When I was 41 (I am 68 now), I had cervical cancer and always felt the odds were in my favor of not having cancer again. This cancer is unrelated to cervical cancer, and sometimes I am overwhelmed thinking I have had two separate cancers. the Cleveland Clinic did genetic testing on me and my family, and my results showed a mutation that makes me have a higher likelihood of breast cancer. Talk about overwhelming information. But they sent me to a breast specialist and because I have no family history of the disease, the plan will be yearly screening.
Currently, I am taking the PARP inhibitor, niraparib. It was a big decision to take the drug because of the side effects, and I have been cut back from the original dose. I feel lucky because the side effects for me are minimal aside from tiring easily and my platelets are staying in the normal range now. My oncologist is very optimistic about my future, but I wanted to do whatever possible to keep this horrible disease away. I am hoping that science will continue to find better methods to diagnose and treat this horrible disease.
My journey has been one of anxiety, fear, and anger, and finally being able to return to the life I love and enjoy. I try not to be too introspective, but it is so hard. I am making up for my lost summer, and my husband and I have traveled and biked and hiked. But sometimes a careless remark can send me crashing to despair. When people share that they “know someone who died of ovarian cancer,” it just mentally sets me back. But on the other hand, friends of friends have reached out and told me they had ovarian cancer, 30 years ago, or their sister was diagnosed over 20 years ago, and I am filled with hope.
Looking back, I am so disillusioned with my local healthcare system. I am retired from healthcare and was able to effectively be my own advocate, but what about women who accept whatever their doctor says? We shouldn’t have to wait three weeks for appointments when facing a life-threatening diagnosis. I had so much anxiety from the minute I was diagnosed and was begging for anxiety medication, but I had to wait two weeks for my PCP to come back from vacation. But I am so grateful and blessed to live an hour from the Cleveland Clinic, and the minute I entered the doors of the Taussig Cancer Center, they cared for every aspect of my mental and physical well-being. I like to tell people they owe it to themselves to seek the best care they can find. There are wonderful cancer centers all over the country and these centers are cutting edge on treatments.
Going forward, I am in a good place mentally and physically. I love doing what I’ve always done and am so appreciative of the loving care and support my husband, grown sons, and daughter-in-law provided after my diagnosis, and during and after chemo. It’s hard to be the “mom” of the family and then suddenly be the person who needs the care and looking after. I still am terrified at every blood test (my CA-125 is staying very low) and every oncologist appointment. I try not to dwell on what has happened and recently something happened that has made a world of difference! I adopted a dog that had recently been removed from a puppy mill. She was a puppy mill mama and was slated to be killed because her pup-bearing days were over. We understand each other—we’ve both been through a trauma, and we both are tentatively learning to live again.
When I was diagnosed, I felt so alone—even though my family was so supportive–I just wish I had someone who had been through this to talk to. I was too distraught to find a group and wish I had known about SHARE Cancer Support. There is so much more to this disease than the surgeries and chemo. It’s the horror of losing your hair. Not so much losing it, but trying to live with no hair and still be able to comfortably go out in society without looking like the cancer patient that you are. It's the fear of knowing chemo will end and then knowing you are not doing anything to fight this disease. It's the fear of wondering if you passed a genetic mutation on to your children and praying, they never experience a cancer diagnosis. And it is the frustration of not having better diagnostic tools. I thought I had a CA-125 test two years ago, but looking at my record, my doctor never followed through and ordered it. I just assumed it was normal. As women, we have to be our own healthcare advocates.
Going forward, I try not to let this horrible disease define who I am. My hair is long enough now that I just look a little trendy, and not like a cancer victim. My family and I can get together without the word cancer entering into the conversation. But deep inside the fear, and the trauma, will always reside next to my determination and love of life.
Michele Gross
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