February 4th is World Cancer Day. This year, February 4th is also my seven year “cancerversary.” On this day in 2010 I was told I had Stage 4 Anal Cancer and an uncertain, and perhaps short, future.
I asked my OB-Gyn doctor to check what I thought was a hemorrhoid flare up at my routine pap smear visit, and discovered it was actually two tumors. Not only was I diagnosed with anal intraepitheal neoplasia with a high grade dysplasia, a rare form of cancer, I was told I had an even rarer form of metastasis located in my bone. As you can imagine this was completely devastating for both me and my family. After surgery to remove the sacral tumor, I received simultaneous chemotherapy and radiation; two rounds of chemo lasting 96 hours each and seven weeks of radiation that resulted in my hospitalization for the last two weeks of treatment for pain control.
The thing about anal cancer is that it’s a “below the belt” cancer. As overwhelming as the diagnosis was, it was complicated by limited treatment infrastructure and clinical research, side-effect management, and lack of awareness and support organizations. Anal cancer encompasses so much more than receiving prescribed treatment and focusing on recovery. It requires patients to become experts on their disease, its treatment, and side effects. Even more challenging is finding support and advocacy. My experience has been difficult, complex and arduous.
Not only is anal cancer rare, there is definitely an unwarranted stigma attached to it.
I overcame the shame and humiliation and decided to fight the stigma. I did not have one risk factor when I was diagnosed. I thought I had a hemorrhoid and sciatic pain. I was wrong. My “well woman” doctor appointment saved my life!
These days, I try not to take any medications unless absolutely necessary. I eat to try to keep weight on and am limited by the damage radiation has inflicted on my digestive system. I exercise and try to increase my strength. I baffled them all when I went into remission. I have since experienced a recurrence in my right lung which I had surgically removed. When it recurred again in the same lung I underwent chemo and radiation. I have been cancer free for the last 3 years!
I would've liked to have a support group… a real one for folks like me. I had an overwhelming desire for any information about my cancer and its available treatments. I was baffled and frustrated when my internet searches turned up little information. It took hours to find anything useable and the few support sites available were not easily found. I was stunned that in the information age that we all live in that this was the best they could do for my cancer.
My current goal is to raise awareness for not only anal cancer but all cancers that exist “below the belt.” All cancer patients deserve easy access to reliable information and much needed support. People need to be educated. Doctors need to be screening patients. I am talking and I can’t shut up… I won’t shut up! My hope is that no one ever suffers from anal cancer and if they do they get early diagnosis and treatment.
I started a website to support others throughout their cancer journey.
It was three years after diagnosis when I realized that all was not lost and I was living on beyond predictions. That’s when I started a deeper self-examination. The longer I survived, I knew my cancer needed a voice. I knew I had a voice and what I had to say wasn’t about me. I came to understand that it’s really never about me, but about fulfilling my purpose. My hope is to shatter the stigma and loneliness that accompanies this anal cancer and to provide a voice for those silenced by shame.
52 Shades of Blue is a step in that direction and my dream is that this will become a catalyst for change. Why name it 52 Shades of Blue you ask? Some reports say the human eye can detect 52 individual shades of blue. We identify all those various shades as “blue” but recognize that they are all distinctive. The blue ribbon color has been designated for many of the cancers represented on this web site. They too are all unique and are entitled to recognition as such.
My objective is to help others, and in doing so raise overall awareness so when others see a blue ribbon of any shade they know exactly what it represents. It symbolizes strength, courage and hope! It embodies one voice that declares, “We count!”