I Found My Voice in My Cancer Care and Refused Decisions I Was Uncomfortable With

After I was diagnosed with anal cancer, doctors wanted me to get an colostomy bag, but I refused. Later on, I had to voice my concern about a drug that could improve my chances for survival.

I entered the hospital on a Saturday night because I was bleeding bright-red blood from my rectum.

Despite seeking medical attention for months prior, describing the symptoms which I know now are anal cancer symptoms, I knew something was seriously wrong. For months physicians kept telling me, “It’s your age,” but my gut instinct said otherwise.

By 3 a.m. it was confirmed that I had an enormous mass in my rectum, and by 5 a.m., I was admitted into the hospital officially as a “cancer patient.”

I called my family, my friends and my daughter flew in. I spent the next few days going through a series of tests including a liver biopsy to confirm my stage 4 status. The cancer wasn’t clearly seen in scans, so the biopsy was the only option left, and the pathologist confirmed cancer cells were in my liver — meaning that they metastasized, or traveled, from the primary mass.

The doctors went back and forth on my official diagnosis. They suggested colon cancer, ovarian cancer and landed on anal cancer based on the location of the mass and the fact that it consisted of squamous cell carcinoma. The tumor was impacting my pelvic area and my anal canal was almost closed, which labeled me “impacted.” If the tumor had ruptured, it would have been life-threatening.

I refused to commit to a colostomy bag to relieve the impaction, although they said it would be temporary. I felt my doctors were more committed to the liability of not doing the colostomy bag than they were about my personal quality of life. This is where I found my voice. It was the first of many medical decisions that went against “doctor’s orders.”

The oncologist and an additional parade of surgeons came into my room one by one to scare me into the colostomy bag, and each confirmed that I had one to three years to live. The last surgeon was feisty, firm and intelligent and after she and I went toe to toe with the facts she smiled back at me and said, “you are the one that survives.”

That’s when I decided not to be branded with cancer ribbons or colors. My boyfriend bought me a Wonder Woman mug that read “strongest woman alive,” and Wonder Woman became my mantra. I made the decision that I was either going to die sooner trying to live by making progressive medical decisions, or those same decisions would allow me to live 20 years or longer. I wasn’t going to settle on living one to three years.

I left the hospital on a mission. I read that my cancer is rare although currently on the rise annually. I also read that it only had a survival rate of 36% and many of the side effects to treatment can impact your quality of life after cancer.

I immediately began a chemotherapy regimen consisting of a combination of carboplatin and Taxol (paclitaxel). Other anal cancer patients had a combination of chemotherapy and radiation at the same time. I figured out later on when you have stage 4 cancer, you must “prove yourself” to receive the radiation and my proof needed was improving the secondary cancer in my liver.

I had an anaphylactic reaction to the Taxol, which scared the nurses and the doctors around me. Apparently, this was life-threatening, but I was willing to keep trying because my life was already threatened by cancer.

I knew the Taxol was the one chemotherapy that would give me a chance to live, but I did not have the support of my doctor to continue. As she said, “it’s a hard no.” It was then suggested that we replace the Taxol with Abraxane (nab-paclitaxel), a different version of paclitaxel with fewer side effects.

Eighteen long days later and outside of my treatment, I finally got the health insurance company and my physicians to approve my new treatment.

Six cycles later, I maintained my weight overall and had minimal side effects from my chemotherapy. The 16 original tumors identified in my liver were reduced to three, and then two. There is also limited metabolic activity in them.

Surprise! I graduated from the first phase of my cancer journey and now I will be receiving six weeks of radiation with a chemo pill to sensitize my radiation. They will focus on destroying what is left of my primary tumor. I also found out that my “anal cancer” is now “anal rectal cancer” because it’s located in the mid to upper portion of my rectum. This sounds trivial, but it just increased my life expectancy and decreased the potential of harm from the side effects of treatment.

Every person’s cancer journey is personal. There is not one size fits all. My best advice is this: be your own advocate and don’t be afraid to use your voice.

This article was written and submitted by Michelle Damone.

This article reflects the views of Michelle Damone Horan and not of CURE®. This is also not supposed to be intended as medical advice.

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